Justin's Health Updates

Fifth Anniversary

2009-08-20T09:08:00.000-04:00

It's been more than 2 1/2 years since I've posted here. I'm posting now because today is my 5 year anniversary! The bone marrow transplant folks consider patients cured when they hit 5 years without evidence of the disease, but I (and I am sure they) have considered me cured for a while now. I am doing great. I'm on no meds and haven't been for a year or more, I've become very active again with tennis, volleyball, basketball, bicycle riding, disc golf, etc. It's not that I'm great at any of them, but I am doing them and probably about as well as I would have if I had not had leukemia and a bone marrow transplant. Of course, having a couple of truncated fingers (see Month 28 post) has some effect, but apparently the body can compensate pretty well even for things like that. I know quite a few bone marrow transplant survivors and most of them are still on some meds and/or have lingering effects of Graft Vs Host Disease (GVHD). I consider myself quite fortunate and have no good explanation as to why I'm doing as well as I am. I doubt it’s karmic.

As far as catching up, the main thing that happened after my last post in November of 2006 is that on Christmas Eve of that year, I got a pain in my jaw (lower right) that got worse quickly enough that I called my dentist that day. When I described the problem to him, he said it sounded a lot like an abscess and he put me on antibiotics. On the day after Christmas, he called to see how I was doing and wanted to see me so I went in. After examining me, he said it wasn't an abscess and he had no good explanation. I therefore called the Bone Marrow Transplant clinic and went in to see a doctor there. My regular doctor wasn't there so I saw someone who was not very familiar with my case, although he was the head of the transplant program. He looked in my mouth and saw some small white lesions on the right side of my mouth and asked me if I had any traumas recently like an illness or emotional trauma. I thought for a few seconds and couldn't think of any illness and so I said as much. The PA who was there and did know my case mentioned that there was the finger amputation that had happened just a month prior. Oh yes, well there was that. I laughed from incredulity that I hadn't remembered something that was actually huge.

It turns out that I had shingles or herpes zoster on my trigeminal nerve. Shingles is actually from the herpes virus that causes chicken pox and in fact, only happens to those who have had chicken pox and is usually triggered by some trauma or stress and is more likely to happen to people with compromised immune systems. I had all the elements - chicken pox, a compromised immune system, and a trauma. The BMT doc put me on another antibiotic for that and said that it was serious and that if it got into my eye as it sometimes can, he would put me in the hospital with an antibiotic drip. Well, it didn't get into my eye, although it did get very painful. I even had a bout one night of something called Trigeminal Neuralgia which some consider the most painful thing that one can experience. It came on very suddenly and really scared me because the pain was extreme and I had no idea what was happening. It felt like the right side of my face was literally on fire and was going to melt right of my skull. I woke up my wife and told her about it and that I didn't know what to do. The good news is that it lasted maybe 2 minutes (I'm sure it was not as long as it seemed) and then subsided gradually. Thankfully, it only happened to me once, but there are those who get it repeatedly, and among those, some actually take their own lives because of the severity of the pain and the unpredictability of its occurrence.

The shingles took a long time to get better and it really is an extremely unpleasant condition that I wouldn't wish on my worst enemy. I suffered with what is called post herpetic neuralgia for years and in fact, my lower right jaw and cheek are still somewhat numb, although it's not enough to bother me most of the time.

Aside from that, my health has been really good. When I get colds now, they tend to last a lot longer than they used to and I've had some sinus infections that have gone on for weeks and weeks, but overall, I can't complain. I had bone marrow biopsies at years 3 and 4 and they, like all the others, showed no evidence of the old bone marrow. Like I said earlier, I feel blessed and quite fortunate that not only am I still alive, which I almost certainly would not be with the transplant, but also doing extremely well. I also continue to be and always will be grateful to those who have supported me through the ordeal. In a way, they are the real blessing

Month 28

2006-11-29T15:47:00.000-05:00

I was going to write to this blog on Thanksgiving weekend just to say that things were going well. My cold started petering out after 3 weeks or so. The coughing lessened a little each day and is now gone. The runny nose persisted a bit longer and still continues slightly, although I guess that could be allergies and not a cold. Also, I got more inoculations, including polio, tetanus, diphtheria, hepatitis B, and influenza.

Anyway, things were going fine until Wednesday afternoon (Thanksgiving Eve) when I had a very unfortunate accident with a hydraulic log splitter that resulted in the loss of the ends of 2 fingers of my right hand. We had been splitting for a while and were within a couple of minutes of being done when I broke the cardinal rule of using such a machine which is to not put your fingers on the end of the log. I won’t go into details partly because I don’t like to relive it. Although we had the severed tips, reattachment was not an option mostly because it was only the ends of the fingers. They were severed at the first (most distal) knuckle of my index finger and a little above that on my middle finger. I went to see an orthopedic specialist yesterday and found out that I had not lost as much as much as I had thought for 6 days (I had thought it was about ½ inch more than is the case). He also said that the skin graft which had been done in the ER that night may be good enough so that another graft would not be required. That night in the ER, they sewed some skin from the severed tips onto the ends of the fingers and my memory of what I was told was that what they had done was just to protect the ends and keep them clean, and that another graft would be done with skin from the palm of my hand. It was good news to find out that might not be necessary.

The bottom line is that I will be fine. When I heal and recover, I will have to make a few adjustments (e.g. typing on a keyboard), but will not be greatly hampered for most things. In the meantime, it has been and will continue to some extent to be painful and very inconvenient.

Lesson for all – when using powerful tools of any kind (including non-physical), do not get careless enough to forget how much harm as well as good can be done with the tool.

Love,
Justin

Month 27

2006-11-02T14:45:00.000-05:00

It’s been more than 6 weeks since I last posted here. The good news is that that is due, in large part, to the fact that I have had little to report, and that is a good thing. It’s been so long since I had been into the clinic for an appointment, that I forgot to go get my blood labs done in time for the 10/23 appointment (my health insurer, in it’s wisdom, requires me to make a separate trip to an approved lab to get my blood work done, instead of allowing them to draw the labs right before my appointment at the clinic), so I had to put the appointment off another week to 10/30.

I had my first colonoscopy last week which was certainly not fun, but also not unbearable. The doctor removed 2 small polyps which he was going to biopsy, but I haven’t heard anything yet. I’m sure no news is good news. He said that about 20 – 25 percent of people who go in for routine colonoscopies have polyps, so it’s not really uncommon.

It’s actually kind of good that my clinic appointment was delayed a week, because in the meantime (on Thursday, 10/26), I suddenly got quite sick from a cold. I felt bad after work on Thursday, but when I took my temperature, it was below 98 degrees. A couple of hours later, it was 101.4 degrees and I felt really bad. The good news is that while I was home sick the next day, as the day progressed, I felt better and better, and by the end of the day, my fever was pretty much gone. A week later, my temperature had mostly been below normal, with a couple of instances where it got up around 100 degrees. So the fever didn’t hang on like last time, but the cold has really knocked me for a loop. I’ve been coughing quite a bit and worse, my cramping has returned with a vengeance, and has been debilitating at times. It usually takes me at least 2 or 3 hours to get to sleep after I lie down due to the cramping, and during the day, it can and does attack me frequently – back, abdomen, hands, arms, feet, legs, and neck (especially when I cough). The doctors don't know what causes the cramping, but when I went in for my clinic appointment on Monday, I got prescriptions for quinine (which I have not filled) and Atavan (which I have filled). The Atavan is an anti-anxiety med that the doctor said is effective as a muscle relaxant. The dose is small, but I feel like it has definitely help with me getting to sleep a little quicker.

My blood counts were:

..... previous current normal
..... -------- ------- ---------
WBC.. 7.8 .... 5.2 ..... 4 – 11
Hgb.. 14.7 ... 13.6 ... 14 – 18
Plt.. 337 .... 284 ... 150 – 400

All the counts are down from last time, but since they are all still in the normal range, it is no cause for concern.

I’m still thankful every day that I am off my meds. I don’t like being sick and feeling as bad as I do now, but knowing that it is temporary and that I will get back to feeling normal again keeps me hopeful and grateful.

Love,
Justin

Month 25

2006-09-13T22:56:00.000-04:00

Well, since last reporting here, it’s been a bit of a roller coaster ride. Actually, it’s more like my health situation seemed to get better and worse simultaneously. Things seemed to be going fine; I stopped the Prednisone on about August 7 (so that Acyclovir, the anti-viral drug was the only med I was left taking) and was feeling good until August 21. That day, I woke up with a fever that made me feel pretty lousy. I didn’t have a lot of other symptoms, but that fever continued for 13 days straight, ranging from about 99.4 to about 100.8. Now, that’s not a high fever, but 13 days seems way too long for it to persist. I guess the good news is that my immune system kept the infection (most likely viral) from getting out of hand. The bad news is that my immune system doesn’t seem that good at actually eliminating the intruder. I’ve been a week and a half now without a fever and feel OK and glad that I don’t still have that achiness, but I am still sort of run down and tired a lot.

The other good news is that my overall recovery seems to be continuing quite well. I had my 2 year bone marrow biopsy/aspiration on August 30 and got the results on Monday. As I expected, the chimerism studies of both my bone marrow and peripheral blood still show 100% donated marrow. Not only that, but my blood counts continue to improve as follows:

..... previous current normal
..... -------- ------- ---------
WBC.. 6.0 .... 7.8 ..... 4 – 11
Hgb.. 13.6 ... 14.7 ... 14 – 18
Plt.. 274 .... 337 ... 150 – 400

My hemoglobin made it into the normal range for the first time since the transplant. They had warned me that it might never recover completely, but it looks like it has. So I may still feel tired from being sick for so long, but I now have more hope that my stamina can return full strength. I got a taste of that before I was sick and it felt really good.

More good news is that I’m now (since Monday) off all meds! I was just taking the anti-viral drug Acyclovir for the last several weeks, but since I seemed to get sick from a virus anyway, I’m not sure how much good it was doing. Now I have to get a Dexascan to make sure my bones have survived intact, plus I have to get a whole series of vaccinations - just like a kid would, I imagine:

polio – (inactivated, non-oral) – 3 doses
tetanus and diphtheria (but not pertussis) – 3 doses
hepatitis B – 3 doses
influenza
pneumococcal – 2 doses
hemophilus influenzae – 3 doses
mumps, measles, rubella

I’m doing well enough that they are stretching out my time between clinic visits to 6 weeks instead of 4; plus I’m going back to the dentist and my PCP which I haven’t done for 2 years (with one exception for the dentist to fix a filling). Now I’m scheduled for fun things like a colonoscopy, for which I am overdue at 54 years of age.

Overall, I’m very happy that my recover continues and I seem to be doing as well as I am. There are always things to complain about like my taste still far from recovered and I still have muscle cramping in various parts, but these are relatively minor things compared to what could go wrong. I still see other BMT survivors who are still suffering every day at 4+ years post transplant.

I imagine the gaps in my blog will grow larger as I have fewer incidents and fewer doctor visits to report, but I do intend to keep making entries when appropriate.

Love,
Justin

Month 24, part B

2006-07-27T15:59:00.000-04:00

I saw my pulmonologist yesterday and he had a few interesting things to say. First of all, as soon as he saw me in the waiting room he said, “Well, you’re pink at least.” Every other time I saw him, he said I was cyanotic. I took their mini PFT (Pulmonary Function Test) and it was good. After examining me, he said there was no reason for me to have to come back, but that I could certainly call with any questions or concerns.

After I thanked him (again) for discovering that Dapsone was poisoning me (causing methemoglobinemia), he indicated he felt he should have figured it out sooner. He said when he did figure it out, he considered it somewhat of an emergency and that I needed to stop the drug immediately. Although he’s never seen this reaction to Dapsone, he has seen it as a reaction to other things like topical anesthetics and says he has seen it cause heart attacks. With the heart already struggling because of a shortage of oxygen in the blood from the methemoglobinemia, extra demands (like tennis for example) can be too much. He said that my exercising like that without having chest pains means that my heart is pretty healthy.

I’m guessing that he figured out the problem by thinking about the mechanics of normal presentations and my presentations of hypoxemia with relatively normal hemoglobin levels. I think normally the levels of cyanosis and hypoxemia that I was exhibiting would be associated with severe anemia (low hemoglobin counts), and since my Hgb was not extremely low, one might figure out that the hemoglobin was not able to transport oxygen sufficiently. This relatively simple connection might be why this doctor felt like he should have figured it out sooner.

Still feeling good,
Justin

Month 24

2006-07-25T11:36:00.000-04:00

Yesterday was another regular clinic appointment. Again, my regular doctor was seeing inpatients in the hospital, so I saw yet another staff doctor whom I have seen before and liked.

My counts were as follows:

..... previous current normal
..... -------- ------- ---------
WBC.. 4.8 .... 6.0 ..... 4 – 11
Hgb.. 12.1 ... 13.6 ... 14 – 18
Plt.. 262 .... 273 ... 150 – 400

I’m very happy with these counts (as was the doctor). I can’t remember when my hemoglobin was that high – almost in the normal range. Plus my blood pressure was very good and my pulse ox was 95, which is a little low but not bad, and way better than it was reading a couple of months ago.

Prior to the appointment, my meds were down to 5 mg of Prednisone a day and Acyclovir (anti-viral) twice a day. I had been taking Protonix, but when I needed a new prescription for it, I called and asked if I needed to continue it and since I haven’t been having stomach problems, I was told I could discontinue it. Since I have been doing so well on the minimal amount of meds I have been taking, the doctor said I should cut back the Prednisone to 5 mg every other day for two weeks and then I can stop! While 5 mg is about how much corticosteroid the adrenal gland produces naturally, but since I’ve been ingesting it, the adrenal gland cuts back its production, so the theory is that every other day dosing will kind of “wake up” the adrenal gland gradually to start producing again. The doctor warned me that while weaning, I may have some days of feeling a bit punk. I forgot to check about whether I can stop the Acyclovir when I stop the Prednisone, but I’ll call and ask in 2 weeks when I do discontinue Prednisone. Apparently, the reason they are continuing with the anti-viral drug is that there is still a risk of a nasty virus causing something like shingles. It would be good to not get shingles, so I’m willing to continue that med until they say I’m relatively safe.

Now that I have gotten past the effects of the Dapsone poisoning, I realize that at the time, I didn’t know how bad it had been when I was suffering from methemoglobinemia, which was depriving me of oxygen. It was really bad, and now I’m a strong proponent of not only breathing, but of making sure one gets enough oxygen. I’ve been feeling great with the only real negatives being some cramping (stomach, back, and feet) which is a little worse than it was a short while ago, but not nearly as bad as it was a while before that, and taste still not back to normal. Now it looks like I could be two weeks away from being off meds altogether. Things couldn’t be much better and I want to figure out how to celebrate the discontinuation of meds, a milestone that I think relatively few bone marrow transplant survivors ever reach.

I have an appointment with the pulmonary specialist tomorrow, and while I don’t feel that I need his expertise anymore, I think it’s standard to follow up. Plus, it will give me another chance to express my appreciation to him for figuring that Dapsone was killing me. My next clinic appointment is for my 2 year bone marrow biopsy which I have scheduled for 8/30, with a follow up appointment on 9/11. Assuming everything looks good, I would guess that my clinic visits will become a lot less frequent, and that’s fine with me.

Feeling great and very optimistic about the future,
Justin

Month 23

2006-06-28T15:28:00.000-04:00

On Monday, I had my regular clinic appointment. My regular doctor was seeing inpatients in the hospital, so I saw another doctor whom I have seen before and liked. Also, I found out my PA, whom I liked very much has left and won’t be back. Apparently, her brother was killed in a pedestrian vs. SUV accident in Manhattan and she left to take over his business there. I’m trying to find a way to contact her to express my condolences and say goodbye. Aside from these things (and having to change a flat tire in the rain), the appointment went well.

My counts were as follows:

..... previous current normal

..... -------- ------- ---------

WBC.. 5.6 .... 4.8 ..... 4 – 11

Hgb.. 10.0 ... 12.1 ... 14 – 18

Plt.. 284 .... 262 ... 150 – 400

These are good counts – my WBC is down a little (probably because I’m not sick), and my hemoglobin is up a bit which is good. Also, my pulse ox reading was 97 again which is really good for me (although in the low normal range). I talked to this doctor about methemoglinemia (see last post about problems with Dapsone), and while he had heard of it, he said it is very rare and is the kind of thing they have to study for board recertification tests, but hardly ever see.

Everything else he looked at he was happy with, so he said I could stop taking Cellcept (an immune suppressant)! That leaves 5mg of Prednisone as my only immune suppressant left (and it is a very low dose)! I asked him when we could think about reducing my other meds, which are really just prescribed because of the immune suppression, and he said I could stop taking the penicillin. That leaves me with just the Prednisone, Acyclovir (anti-viral), and Protonix (for stomach, etc.).

There are many milestones in this process. For example, in August, I will hit my two year anniversary (which will require another bone marrow biopsy/aspiration). But of all the milestones, getting completely off of my meds will be one of the biggest, probably second only to surviving the transplant and coming home, and it may happen next month when I go in again. I’m not sure how I will celebrate, but I will.

A couple of other interesting things the doctor said, which I am writing here partly for my own sake:

He warned me that people that are sensitive to Dapsone are sometimes sensitive to Bactrum (a fairly common antibiotic) as well.
I mentioned to him that my taste was still not fully returned and wondered if getting off meds might help with that. He said that while one can never rule out meds for something like that, the more likely cause of the taste problems is still the chemotherapy, which he says often causes taste problems and that some people recover the taste quickly and some take a very long time. He says two years is not unheard of. (Did I just end a sentence with a preposition or not?) I still believe that my taste is improving, albeit VERY slowly.

Finally (for now), I woke up early this morning (3 AM) needing to blow my nose like crazy. When I got out of bed a few hours later, my sinuses were still kind of full and I felt a little crummy, and it continues into the afternoon without getting much better or worse. I sure hope I’m not heading for another cold virus wipeout like I have a couple of times already this year.

Until next time, love,
Justin

Month 22, Part B

2006-06-10T11:09:00.000-04:00

Thursday, 5/18 – I fell asleep mid morning and woke up at about 12:30 with a growing feeling of nausea. The nausea got worse through the afternoon, and when my wife got home for school at about 3:15 (and was planning to leave in a very short while for a three day conference she had been helping plan for), I really felt like vomiting, but I resisted because I didn’t want her to feel like she should stay home with me and not go to her conference. When she left, I felt so bad that I tried to vomit, but I failed. However, I did start in with some diarrhea. I soon fell asleep again and slept for about an hour, after which, the nausea had subsided quite a bit, although I had no appetite at all. The diarrhea continued for the next 2 days.

Sunday, 5/21 – No diarrhea with a small amount of solid stools. My appetite started to return, although all food continues to be repulsive to some degree because everything tastes terrible to me. My taste has been off since my transplant, but this is much worse than it’s ever been before.

My pulmonary doctor called in the evening (from a pulmonary conference in San Diego as it turns out) and said he had been thinking about my case and decided that Dapsone might be the cause of my low pulse ox readings because it can turn the skin blue. He said I should stop taking the Dapsone, and since I really dislike taking any meds, I readily complied.
I had been taking Dapsone since the transplant, and was never sure what it was for. The pharmaceutical sheet that comes with the prescription says “Dapsone is used to treat leprosy and other skin diseases.” When I later asked my other doctors what it was for, they said it is to prevent a type of pneumonia they refer to as PCP (pnuemocystis carinii pneumonia), which is an opportunistic disease that is one of the more common causes of death for HIV/AIDS patients. They are quite wary of it in all immune suppressed patients. I did some research on my own and found out that Dapsone can very rarely cause methemoglobinemia.

WARNING – this paragraph contains a simplified, but somewhat techinal explanation of methemoglinemia which I got at http://www.emedicine.com/EMERG/topic313.htm. You may or may not be interested. Normally, hemoglobin (red blood cells) contain iron molecules in a state that they can combine with oxygen by sharing an electron, becoming oxyhemoglobin. When oxyhemoglobin releases the oxygen to tissues, it can again comgine with oxygen. Sometimes the hemoglobin becomes oxidized, the iron becomes incapable of transporting oxygen, and it is then called methemoglobin.

History:

Normal methemoglobin concentrations are 1% (range, 0-3%).
At concentrations of 3-15%, a slight discoloration (eg, pale, gray, blue) of the skin may be present.
At fractions of 15-20%, the patient may be relatively asymptomatic, but cyanosis is likely to be present.
Signs and symptoms at fractions of 25-50% are as follows:
Headache
Dyspnea
Lightheadedness
Weakness
Confusion
Palpitations, chest pain
Signs and symptoms at fractions of 50-70% are as follows:
Altered mental status
Delirium

Physical:

Discoloration of the skin and blood is the most striking physical finding.
Cyanosis occurs with the formation of 1.5 g/dL of methemoglobin, as compared to 5 g/dL of deoxygenated hemoglobin.
Seizures
Coma
Dysrhythmias (eg, bradyarrhythmia, ventricular dysrhythmia)
Acidosis
Cardiac or neurologic ischemia

END WARNING.

So Dapsone can cause methemoglobinemia, which can cause some of the symptoms I had been manifesting, such as cyanosis (blue lips and skin), weakness, anemia, etc. It apparently can also have more serious conseqences, such as coma and death. I didn’t get my methemoglobin levels tested until after I had been off Dapsone for more than a week and was feeling much better, at which time it was normal.

Monday, 5/22 through Saturday, 5/27 – I had diarrhea throughout this period and still got winded very easily. I finally went back to work on Thursday and Friday.

Saturday, 5/27 – no diarrhea since about noon and energy started to return. My taste also started to return to pre-intestinal virus levels.

Sunday, 5/28 – rode my bike to church and back, and hit tennis balls for a little less than an hour.

Tuesday, 5/30 – regularly scheduled BMT clinic visit. My counts were good:

...... current normal

..... ------- ---------
WBC.. 5.6 ..... 4 – 11
Hgb.. 10.0 ... 14 – 18
Plt.. 284 ... 150 – 400

Most surprisingly, my pulse ox readings (via finger sensor) were 97 – 98! I would have been happy if it had returned to 91, where it was in the winter before it started plummeting. I don’t ever remember levels that high. The doctor and PA were both very happy with counts, and were smiling because they said I looked so much better. I had some color other than white or blue I guess. Even when I was cyanotic, I couldn’t see the difference, but my doctor said that I’ve been on Dapsone since long before she started seeing me, so she never knew what my normal coloring was before.

They cut one of my immune suppressants (Cellcept) in half – from 2 to 1 (and down from 4 a while ago), and my Prednisone from 7.5 to 5. The doctor also explained that anemia can be caused by a virus (there were other corroborating indicators), and that diarrhea can be caused by an antibiotic and sometimes there is even a delay.

As we were talking about my history, the doctor mentioned that because they have lowered the generally accepted criterion for AML (acute myelogenous leukemia), which is what I was headed for, if I came in now with the same level of blasts in my bloodstream as I had a year and a half ago, I would probably be given chemotherapy treatments to get them down to a lower level before doing a transplant. She says I was lucky that the graft versus leukemia effect was strong enough in my case to kill off the diseased bone marrow.

To catch up to today (6/10), I’m still feeling quite good, with my appetite returned and a good level of energy.

Love,
Justin

Month 22, Part A

2006-06-10T11:04:00.000-04:00

I’m way late with posting to this blog for the last several weeks, I had two major illnesses in that time, so I’m going to post 2 different entries roughly corresponding to the two illnesses. I’m also going to post them without much proof reading or editing, because if I don’t, it will be a while longer before they get posted.

A few months ago, I could go 6 weeks with very little happening. Since my last post was at the beginning of the month, one might think there won’t be much to report, but one thought that, one would be mistaken. A whole lot has happened and didn’t post because a) much of the time I didn’t have the energy and b) the amount to write built up so quickly, I became a bit disinclined to tackle such a large task. After about a week of being sick, I took some notes because I knew I’d have trouble remember the sequence. Much of this post is from those notes which were from memory at the time, so I won’t vouch for the precision, but precision may not be as essential as the general idea of how things went. When I last wrote here, I mentioned a cold and how it was reminiscent of one that had turned into infections that wiped me out. This cold did not follow that route, but seemed to manage to wipe me out anyway.

I last posted to this blog on Wednesday, 5/3, and the next night, I had cramping so severe that if I slept at all, it wasn’t until maybe 5 or 6 AM. On Friday, I felt pretty lousy in the morning, sleeping on and off. I can’t remember if I had a fever or if I even took my temperature. I managed to work 2 or 3 hours in the afternoon and then felt well enough to play bridge for about 6 hours in the evening.

Saturday, 5/6 – I woke up febrile and had a fever of about 102.3 most of the day, breaking to below 98 in the evening.

Sunday, 5/7 – I woke up afebrile and starting in the late morning, I started cramping way worse than I ever had before. The cramping was in my hands, my forearms, my back, my stomach, and my neck all at the same time and very intense. It seemed to come in waves a bit and the pain got so bad at times, I felt faint and/or nauseated by it. I took some narcotics (oxycodone) for relief and indeed it seemed to help. It didn’t stop the cramping, but the intensity was not as bad. I called the weekend number for the clinic and they paged the doctor on call who said that the oxycodone was a reasonable way to treat the pain. I asked him about muscle relaxants and he said they really weren’t indicated for cramping. He also said that cramping can be triggered by a virus and that Cellcept (one of the immune suppressants that I am on) can exacerbate it. My fever spiked at 104.2 later in the afternoon. However, out of a fear of being admitted to the hospital, I didn’t tell anyone about it at the time. I since decided that this was pretty stupid and I wouldn’t do that again. I took a couple of acetaminophen and at about 12:30 AM, the fever broke.

Monday, 5/8 – I had a low grade fever (about 101.6) all day along with pretty severe cramping. The BMT clinic called and wanted me to come in so they could check me out, so I went in. They took blood labs, including a culture to check for infections and had me get a chest X-ray. My blood counts were pretty good and my chest X-ray was clear, although the doctor heard a bit of wheezing in my lungs. Because of the wheezing and the fact that I still coughed up sputum occasionally, they prescribed an antibiotic (Levaquin), even though they didn’t think there was an infection. They just wanted to play it safe because an infection could quickly get out of hand. A few of the interesting comments they had were that they were skeptical of the theory of the on-call doctor the day before regarding the cramping being triggered by a virus and exacerbated by Cellcept; that indeed muscle relaxants are more for treatment of muscle injury for example, and that they impair things like driving more than narcotics; and that fevers breaking are indicative of a functioning immune system.

Tuesday, 5/9 – afebrile until late in the day, with a 101.0 temperature at about 11:00 PM. I had pretty severe cramping all day, especially in the afternoon. Although it wasn’t as bad as Sunday, it was bad enough that I took Oxycodone in the morning and afternoon. Ever since this recent illness first struck, I had been very tired and got winded at doing almost nothing. Not wanting to give up because I got tired, and thinking I needed to do more to stay active and not get more out of shape, I decided to bike over to my son’s house which is about a mile away. I figured that no matter how winded I get, a mile is nothing on an efficient machine like a bicycle. I was wrong. By the time I got to his house, I decided it was a mistake. I had to rest for about 15 or 20 minutes before heading back. I made it, but it felt like too much.

Wednesday, 5/10 – my temperature was 99.6 in the morning and about 95.6 in the afternoon. The cramping was pretty bad all day and late in the day, I noticed some mottling in my arms and legs. It went away by the next day and I never did figure out what it was from.

I also had a follow up visit with the pulmonary specialist I had seen in March. He did a spirometry test when I first got there to evaluate how well my lungs are moving air. It involves taking a deep breath and blowing out as hard and long as possible. They normally do it 3 times, but they let me stop after 2 because I was coughing through both of them and felt quite faint after both. I figured the results would be awful, but between the March and May tests, my percent of expected air movement went from 92 to 104!

The doctor also had the results of the CT scan and PFT (pulmonary function test) which he had prescribed, plus the chest x-ray which was done on Monday. The CT scan showed nothing in my lungs that couldn’t be seen in my pre-transplant films (there was some scarring pre-transplant that he said was probably from pneumonia which I’m not aware of having had). He looked up online the chest x-ray that I had on Monday and said it looked great. He even said sort of under his breath that he wished his chest film looked that good.

He was very pleased with the results of the PFT, including an oxygen saturation measure from the ABG (arterial blood gas test) of 92% before an inhaler and 94% after. These are not great levels, but they are acceptable, and are way above the 85% readings I was getting from the finger pulse ox measure, which he says he would have me on oxygen for all the time. He also mentioned that for now, the pulse ox readings via the finger sensor are useless because they are not coming close to measuring the true oxygen saturation.

As far as meds, this doctor said I could stop taking the Qvar (which he had prescribed) after I was past my fever, but he wanted to wait another month or so before starting to wean me off the Advair. He mentioned that he thought Dapsone could be the cause of the cramping (more about Dapsone shortly), and that he would tell my regular BMT doctor that he sees no reason not to continue weaning me off of my immune suppressants.

Thursday, 5/11 – when I first got up in the morning and was urinating, I felt quite faint and very nearly passed out. When I lay down, I was able to recover enough to shower, but then had to rest again. Every time I moved around at all, I got winded, and felt a bit light headed even when I was sitting and doing nothing. I didn’t cramp much in the morning, but it started up around noon. I called the clinic and told them about what was happening and right away they said they wanted to see me (for my second unscheduled appointment that week). I called my wife to take me in because I didn’t quite trust myself driving while feeling so light headed. At the clinic, they did a bunch of tests, but could find nothing wrong, so they sent me home.

Friday, 5/12 through Thursday, 5/18 – I was very tired much of the time. Sleep was unpredictable and erratic. At night, I sometimes slept some, and sometimes I slept almost not at all. During the day, I would periodically need a nap or rest. I continued to get winded very easily. I believe I went to work for a while on Friday, but worked from home the rest of this time.

Love,
Justin

Month 21

2006-05-03T13:21:00.000-04:00

I had a regular clinic visit on Monday (my first since March), and it was pretty uneventful. My blood counts were all good, although I forgot to get the specific numbers this time. My meds are all staying at their current levels. The immune suppressant levels are relatively low and the clinic doctor doesn’t want to fool with the levels before I see the pulmonary specialist again because he was the one who said (back in mid March) that it might not be the right time to reduce the immune suppression. I go back to see him next Wednesday.

The good news is that my oxygen saturation was measured at 91 this time, somewhat confirming the 94 that was measured when I had my PFT (pulmonary function test) last month and much better than the 85 or so at which I had been running. And despite another cold I seem to have acquired. Although the clinic didn’t have the results of the CT scan I also had done last month (because it was ordered by the pulmonary doc), they could get the results of the ABG (arterial blood gas) done along with the PFT, and they said they looked pretty good.

The cold I got recently makes me a bit nervous because it is reminiscent of the last one that made me so sick. It’s just a cough and stuffy sinuses, but when I blow my nose, my ears squeak, and if I blow too hard, it can block up my ears so I can’t hear well for a while. So far, that effect has been temporary, but it reminds me of last time when it turned into a nasty infection.

I’ve been playing a bit of tennis now that the weather is a bit more accommodating, and while I still get more winded than I would like, it’s a lot better than a little while ago.

I’ll try to write again after my pulmonary appointment next week. My next clinic visit is scheduled for 5/30.

Love,
Justin

Month 20 update

2006-04-06T12:12:00.000-04:00

I had the CT scan done a week and a half ago and have not heard anything. I consider this good news, assuming that if any of my doctors who got the report were concerned with what they saw, they would call me.

I also had a pulmonary function test and arterial blood gas on Tuesday. The ABG wasn’t as bad for me as it apparently is for some people. They have to do a blind stick and the technician doing it said it would be a BIG pinch, but for me, it wasn’t much worse than a regular stick into my veins which I get frequently. She said some people describe it as the most painful procedure they’ve had.

The ABG showed an oxygen saturation of 94, which is good – not great, but good (and quite a bit better than the 85 which I had been getting via the usual finger pulse-ox reading). The pulmonary function tests are a series of tests that are quite strenuous and not al all fun. This time I had to have a pre and post which means that they run the whole series, give me albuterol (familiar to those who have an asthmatic around) to open up the airways, and then run the series again. At the end, the technician said the results were good. While she can’t actually interpret the results for me, she said that she thought my pulmonary specialist would be pleased. I’m hoping that if he is pleased, he will call and tell me I can stop taking my puffers every day.

Anyway, it looks more promising that my breathing problems were at least primarily due to the cold/infection I had. Here’s hoping.

Justin

Month 20

2006-03-28T10:29:00.000-05:00

Yesterday (3/27), I had a clinic visit and went and had another CT scan done. The good news is that my pulse-ox reading at the clinic was back up to 91 or 92. It may be at least in part due to the puffers I’m on (Advair and Qvar), but it’s good news regardless of the reason. My doctor said she had talked to the pulmonary specialist a couple of times. She said she can’t see the hypoxia (manifested as the cyanotic look with blue lips, etc.), but because the pulmonary guy is concerned about GvHD, she isn’t going to adjust my meds, even though after cutting my Cellcept in half, my usual GvHD symptoms of sore muscles and fluid retention haven’t flared up much. I didn’t get my blood counts, but apparently everything looks good from the point of view of my BMT doc. Since they’re not changing anything, she says she doesn’t need to see me until May.

One thing I didn’t mention in my last blog entry is that one upside to my recent health problems is that I lost more weight. I really can’t take any credit because it was mostly due to a complete loss of appetite for most of a week. Anyway, although I put a few pounds back on in the last week, I’m now almost 60 pounds less than I was just before the transplant, about 20 pounds under the weight at which I stabilized shortly after the transplant, and 45 pounds less than I was when the edema was the worst around last November.

I feel quite good right now. I haven’t tested lately whether I still get winded so easily, but I feel like it’s not as bad. Mostly, I feel good because my cold is essentially gone and compared to how discouraged I felt when I was sick, I now am able to feel encouraged about the prospect of continued recovery. I scheduled my PFT (Pulmonary Function Test) and ABG (Arterial Blood Gas) for next Tuesday, and then I’m scheduled for a clinic visit on 5/1 and the pulmonary specialist on 5/10. Of course, when the pulmonary guy gets the results of my CT scan and PFT/ABG test, he will contact me if he sees any major concerns.

Month 18

2006-03-21T13:41:00.000-05:00

I feel a bit contrite. Tomorrow will be 2 months since I last updated my blog. That’s too long. And it not like nothing’s been happening. I don’t know how many people still read this, but I know there are some; and I want to keep it updated even if no one is reading it. I will try to reconstruct what has happened between 1/20 and now, although my sense of when things happened may not be accurate.

At my 1/30/06 appointment, my counts were as follows:

...... last time current normal
..... ---------- ------- ---------
WBC.. 6.6 ...... 7.2 ..... 4 – 11
Hgb.. 11.6 ..... 12.2 ... 14 – 18
Plt.. 247 ...... 269 ... 150 – 400

I know that my pulse-ox readings continued to drop. They had trouble getting readings above 85 starting about my January 30 appointment. There were questions about whether the machines were giving bad readings because some would read about 84, but they would try another that would show about 88. About this time, I also developed a cold with lots of coughing and sinus congestion, and this may have complicated the pulse-ox readings. There was also conjecture that possibly there was some GvHD involving the skin that may make it more difficult to get good readings. As many of you know, the pulse-ox readings involve a small clip that goes on a finger and shines a red light into the finger to measure the oxygen concentration. While it is usually a good indicator, it is a crude measure. Sometime around here, it was decided to send me to a pulmonary specialist to try to determine if there was something wrong with my lungs that hadn’t shown up in the CT scans from December. However, it was hard to get those appointments, so it was set up for March 15. I believe it was also around this time that we reduced my Prednisone to 15 mg/day.

My next clinic appointment was on February 20. My recollection is that there wasn’t much different from the previous appointment. I was still coughing, still had a runny nose, still had low pulse-ox readings, but still felt relatively good aside from the coughing. Since my GvHD still seemed relatively tame (little muscle soreness and my weight actually dropped some), I think we reduced the Prednisone again, down to 12 ½ mg/day.

On March 3, I felt I was still doing pretty well with the GvHD, so I called the clinic and the PA agreed that I could reduce the Prednisone to 10 mg/day. However, my cold was getting worse and I had been feeling increasingly bad the previous day or two. In fact, the night before, I had played volleyball even though I wasn’t feeling great. That was a big mistake. I left early because I felt so bad, and couldn’t even successfully back my car into the garage. First, I hit the curb backing into the driveway, and had to make a second attempt. Then, I broke a mirror backing into the garage. Usually, I feel like a master at driving in reverse, but not that night. It turns out I had a fever of about 101, and I think I stayed home from work on Friday because I felt so bad.

On March 4 (Saturday of course), I woke up with my right ear completely plugged up so I was deaf on that side and I could actually feel some pressure and even slight pain. The combination of the fever and ear problems concerned me, but
I didn’t want to call the BMT unit at Jeanes Hospital (which is the procedure when the clinic isn’t open) because I was afraid they might want to admit me – or at least ask me to come to the emergency room. So I called my primary care physician and went there that morning. The doctor confirmed that I had an ear infection and heard some wheezing in my lungs (which had never been present at my clinic appointments), so she put me on another strong antibiotic (azythromycin) for 6 days. I take penicillin every day, so obviously, the infection I contracted was penicillin resistant.

I was really wiped out the whole next week. I had the energy to do essentially nothing, got winded trying to do anything, remained deaf in my right ear for more than a week, coughed more than ever, had no appetite, etc. I was so wiped out and it seemed to last so long that I really got quite discouraged. I remember expressing frustration at being such a basket case and it was so extreme that it nearly brought me to tears several times. I kept reminding myself that it was just a bad cold and that my GvHD seemed to be heading in a good direction.

March 13 was my next clinic appointment and my blood counts were as follows:

...... last time current normal
..... ---------- ------- ---------
WBC.. 7.2 ...... 4.3 ..... 4 – 11
Hgb.. 12.2 ..... 11.8 ... 14 – 18
Plt.. 269 ...... 230 ... 150 – 400

They were down a little, but not enough to raise concerns. We dropped the Prednisone to 7 ½ mg/day and cut the other immune suppressant (Cellcept) in half. They said after a week, if I was feeling OK, we could drop the Prednisone to 5 mg/day. In response to my concerns that I was still deaf in my right ear a week and a half after it started, they said that it can take a long time for that to clear up.

On March 15, I went to see the pulmonary specialist and he added a new twist to everything. I liked him. He instilled confidence that he would figure out the problem, while having the humility to say he didn’t know currently what was going on. I was sent to this particular specialist because he has been working with the BMT unit for years, and so has familiarity with problems that follow bone marrow transplants. He explained what he did see and know and spelled out how he planned to proceed. The gist of what he said is that he believes the low pulse-ox readings, in part because I looked cyanotic (my lips looked blue to him). Basically, the three things they measure when they do pulmonary tests are lung capacity, the ability to move air, and transfer of gases to the blood. He said between November when I had my last PFT (Pulmonary Function Test) which had me in the normal ranges and now, there has been a significant reduction in my airways and thus my ability to move air and oxygenate the blood. This reduction could be a result of the cold I’ve been experiencing lately, but he is concerned that it may involve some GvHD. He put me on a couple of puffers (Advair and another whose name I can’t remember), and plans to have me get another CT scan, another PFT followed by an ABG (Arterial Blood Gas). The ABG involves a blind stick because the arteries aren't easily accessible like veins are. He also said that patients with oxygen saturation levels below 89 (mine have been around 85) are often or usually put on oxygen. He said he may put me on oxygen at night or while I’m at home, but since I seem to do OK with low levels of activity, he won’t do it yet.

I started this posting on 3/19, and today is 3/21. Yesterday morning, I stopped at the office of the pulmonary specialist to deliver the CT film I had picked up from the hospital that had done it. The doctor was there on his day off, so he had no appointments scheduled, and when he saw me he asked me if I wanted to go look at the CT film with him, so I did. He said the images were pretty good (he was afraid they wouldn’t be) and showed no significant problems. He also said I still look cyanotic. He is going to arrange for me to get another set done so he can see any changes between December and now. I think he is doing the arranging because he anticipates that my insurance might resist me having another so soon after the last one.

I’m going to wrap this up and post it without a lot of editing because I don’t want to delay any longer, so please excuse errors, omissions, and lack of clarity. Maybe I’ll edit it some a couple of days after posting. I’m currently feeling a significant level of concern because GvHD can cause permanent damage to the lungs via scarring, while at the same time hoping that my problems are mostly cold related. In any case, I’m still determined to get back to a more normal life physically. This latest problem leads me to feel that while I’m not near the beginning of recovery, I may not be near the end either. I’m somewhere in the middle of a long process. Meanwhile, I keep thinking that at least I’m still here, and I plan to stick around for quite a while.

I’m scheduled for another clinic visit on 3/27 and another visit with the pulmonary specialist on 5/10, which seems a long way off, but I assume my tests and CT scans will be soon and he would contact me if he found anything significant. My aim is to keep this blog current, so I hope to post again next week.

Love to all,
Justin

Month 17, Part C

2006-01-20T12:13:00.000-05:00

Today marks 17 months since the transplant. I went in for my clinic visit on Monday and there still isn’t a lot to report. In fact, it seems the doctor who saw me last time failed to put a CBC (complete blood count) on my prescription for blood labs, so I don’t even have the blood counts. However, they have been pretty stable for a while, so we’re not too concerned about not having them. My pulse ox (or O2 sat as they say on ER) seems to have dropped even lower (down to about 89), although the machine didn’t seem to be working well. But since I’m not unusually short of breath (usually), the doctor and PA don’t seem too concerned

After my previous clinic visit, the plan was to reduce my Prednisone dosage from 15 mg/day to 10. However, about a week and a half later, my muscles started aching a bit again and I suddenly put on a few pounds. I figured that the GvHD was kicking in again, so I called my PA and she suggested going back up to 20 mg/day. As best as I could tell, it didn’t make the GvHD go away, but it did stop it from getting worse. On Monday, my doctor suggested cutting back to 17.5 mg/day for a week and then to 15 if I wasn’t feeling any worse. I’ll see how I feel on Monday, but right now, I think the GvHD may be a little worse – but maybe not, it’s hard to tell.

I’m really making this up, but I feel like if my new immune system is going to recognize its new host as not foreign some day, it needs to be stressed a bit that way. In other words, if we over suppress the immune system, it will continue to fight its new host when it gets the chance. Even though this idea may only be fantasy, I’m willing to put up with some GvHD in case there is some basis to the theory. I don’t know what a good level is, but I’ll just play it by ear. My goal continues to be getting off meds, especially the steroid. I go back again on 1/30.

Love,
Justin

Month 17, part B

2006-01-01T21:16:00.000-05:00

Happy New Year. As you can see below, my blood counts are staying in a fairly narrow range (and a pretty good range).

...... last week current normal
..... ---------- ------- ---------
WBC.. 6.6 ...... 6.6 ..... 4 – 11
Hgb.. 11.7 ..... 11.6 ... 14 – 18
Plt.. 223 ...... 247 ... 150 – 400

My pulse ox was back down to 91%, but they still don’t seem concerned. My physicians assistant says my liver enzymes indicate that I am handling the reduction in Prednisone very well. She thought I could probably reduce the level again, but my regular doctor was not available and the doctor I saw seemed to know nothing about my condition until he read my charts when he came in the exam room. I felt like he didn’t have a good picture and recommended that we keep the Prednisone at 15 mg/day until my next appointment which he said could be two weeks. My PA questioned him a little, but he said I was just reduced to 15 last week and he didn’t want to reduce it too rapidly. When he left, I told my PA that I didn’t know what the protocol was, but if she spoke to my regular doctor and she thought I could reduce the Prednisone, she could just give me a call. She did call a day later and said it was fine to reduce it to 10 mg/day and we agreed that I would do so after a week.

Starting in January, my doctor is going to start seeing patients on Monday instead of Thursday, so my next appointment is not until 1/16/06.

Cramping is still pretty bad at times, but it’s not constant.

Overall, I’m still feeling pretty good and hope we can continue to reduce the immune suppressants. My weight has been holding steady, which to me indicates that I’m not starting to retain fluids again, although when they examine me, the doctors believe I am still retaining some fluid – just not nearly as much as I had been a month or so ago.

Love,
Justin

Month 17, part A

2005-12-26T11:36:00.000-05:00

Merry Christmas. Again this week, there’s not much to report. My blood counts are still bouncing around the range that have been.

...... last week current normal
..... ---------- ------- ---------
WBC.. 7.6 ...... 6.6 ..... 4 – 11
Hgb.. 11.6 ..... 11.7 ... 14 – 18
Plt.. 207 ...... 223 ... 150 – 400

The only change in my meds was that the Prednisone was reduced from 20 to 15 mg. per day. My pulse ox was back down to 91% from 93 last week, but the doctor actually seemed fairly unconcerned, thinking it would go back up on its own eventually.

My hands sometimes still cramp quite a bit when I do fine motor work with them. I got a chance to play tennis on Friday because it was relatively warm, and while I certainly didn’t play great tennis, it was a lot better than I feared it might be in terms of getting winded, etc. I am encouraged by how I was able to exert myself for an extended period.

I’m going back to the clinic again this Thursday, but the doctor hopes to be able to start stretching out the frequency of my visits soon because it seems that not much is changing and the modifications to my meds will be gradual.

Love,
Justin

Month 16, part D

2005-12-21T11:13:00.000-05:00

I’m quite late with my report on last week’s clinic visit. I probably failed to get this out sooner in part because very little changed from the week before, so this will be short. Here are my blood counts:

...... last week current normal
..... ---------- ------- ---------
WBC.. 11.9 ..... 7.6 ..... 4 – 11
Hgb.. 11.8 ..... 11.6 ... 14 – 18
Plt.. 265 ...... 207 ... 150 – 400

All my meds stayed the same and there was nothing remarkable about my vitals, etc. My pulse ox was up to 93% from about 91 or 92 the last few weeks. This is still quite low, but the improvement is a bit encouraging. I didn’t realized how low a reading of 91% is until I did some reading. While there is concern about a reading of 91%, if it got below 90%, it could be a real problem.

My main complaints right now are that I have periods of fairly extreme cramping in my hands. It seems to happen most when I am holding something in my hands like a newspaper or playing cards (I’ve been playing a fair amount of bridge lately). There is also some cramping in my feet and legs. My potassium levels are fine, so I don’t know why there is the cramping. I am drinking tonic water because the quinine in it is supposed to help. I don’t know how much it does so.

Yesterday marked 16 months since the transplant, so I’ve started the 17th month. I am titling this month 16, however, because it is a late entry for last week. I’ll try to do better this week.

Love,
Justin

Month 16, part C

2005-12-09T23:59:00.000-05:00

Believe it or not, I lost another 12 pound of fluid in the past week. That’s 24 pounds in 2 weeks and about 27 in 3 weeks. My counts were much like before with the WBC high due to Prednisone, and who knows why the hemoglobin is up as high as it’s been for a while. My blood pressure is also a bit elevated due to the Prednisone, and the doctor considered prescribing meds for that, but decided to wait and see how it does with reduced steroid levels.

...... last week current normal
..... ---------- ------- ---------
WBC.. 10.8 ..... 11.9 .... 4 – 11
Hgb.. 10.0 ..... 11.8 ... 14 – 18
Plt.. 343 ...... 265 ... 150 – 400

The CT scan from last week showed nothing remarkable, so there is still nothing to explain my low pulse oximetry. After shoveling snow today, I can tell that I don’t get winded nearly as easily as a week or two ago, although I’m not back to normal yet.
After thinking about things, I developed a theory that if I am suffering from some chronic GvHD that is attacking connective tissue and caused the fluid retention, that it started back well before the immune suppressants were reduced. I remember wondering why I started gaining weight again when I was really not eating much and actually getting some exercise. I now suspect that I was starting to retain fluids then and that it just accelerated when the immune suppressants were scaled back and it had a chance to really ramp up. My weight now is about what it was when I left the hospital and before I started to gain weight. Of course, back then, I had no reason to suspect what was going on.

The other thing I started thinking about was that since my particular form of GvHD seems to be pretty rare, which I infer from the fact that the doctors were at a loss for such a long time, and there seems to be no positive test for connective tissue being attacked, weaning me off of the immune suppressants is going to be tricky. How will we know how quickly to wean and how will we know if the GvHD is gearing up again. I asked my medical staff about this and they said it really is kind of trial and error. We reduce the meds, and if the edema symptoms return, we bump them back up. It could really be 2 steps forward and 1 step back for quite a while. On the other hand, it is possible that the symptoms won’t return and we can take more of a straight line reduction of meds. I told the doctor that I would vote for the latter course. The doctor said her plan is to reduce the Prednisone to a low maintenance level of something like 5 mg/day (I’m down to 20 mg/day now from 40 last week), and then start to reduce the Cellcept again.

It’s amazing how much better I feel with the 27 excess pounds gone. I’m still left with considerable cramping, especially of the hands, some shortness of breath, and taste buds that are still really letting me down. However, they’re bearable and I’m still hoping they’re temporary.

Thanks for listening. Tune in again next week.Love, Justin

Month 16, part B

2005-12-02T14:54:00.000-05:00

The Prednisone has continued to have a profound effect on my edema (fluid retention) problems. I have not only become less of a balloon, my muscles also don’t hurt all the time anymore. At the clinic yesterday, my medical team seemed amazed that I had lost 12 pounds (of fluids, of course) since my visit last week (I’ve probably lost more than 20 pounds in the last 2 or 3 weeks). They could also see that my limbs were much less swollen. My blood counts are still good (the WBC is elevated due to the Prednisone).

...... last week current normal
..... ---------- ------- ---------
WBC.. 8.2 ...... 10.8 .... 4 – 11
Hgb.. 10.5 ..... 10.0 ... 14 – 18
Plt.. 321 ...... 343 ... 150 – 400

As a corticosteroid, Prednisone is a very effective anti-inflammatory, and I believe this is the primary reason that I have seen such a rapid and profound effect on my swelling. However, Prednisone is also an effective (read powerful) immune suppressant that we hope is also fighting back the GvHD that is presumably attacking my skin and connective tissue, causing the edema in the first place. My doctor says it is proven to attack T-cells that are a central part of the immune system response to foreign entities (in this case, me). We’ll see how things go from here. The dosage of Prednisone has been scaled back from 60 to 40 mg/day. Relatively high dosages like this have to be reduced because of the ancillary damages it can cause the body, but apparently, it must be reduced gradually or other bad things happen.

I also had a CT scan of my chest yesterday to see if there is something there to cause my ongoing low pulse oximetry and shortness of breath. I probably won’t get the results of that until next week.

The bottom line is that I feel MUCH better than I have in probably 2 months due to the edema relief. Feeling better physically makes it much easier to have a more positive outlook as well. I do realize that since I have some chronic GvHD going on, I will likely be immune suppressed for some time, but I’m still hopeful about getting past all of this sometime (including getting my taste back).

Love,
Justin

Month 16, part A

2005-11-25T19:52:00.000-05:00

I went in to the clinic on Wednesday this week because Thursday (yesterday) was Thanksgiving. Again, my blood counts were close to what they have been for some time. The additional test was for my adrenal gland and it also showed good function.

...... last week current normal
..... ---------- ------- ---------
WBC.. 8.4 ...... 8.2 ..... 4 – 11
Hgb.. 10.9 ..... 10.5 ... 14 – 18
Plt.. 301 ...... 321 ... 150 – 400

After consulting with other doctors, my doctor said she believes that my problems are mostly due to GvHD attacking my skin (deeper layers) and/or connective tissue under the skin. This could cause the body to rush fluids to that area to combat the trauma. Working on this theory, she increased my Cellcept dosage to 4 pills a day and added a high dose of another powerful immune suppressant drug, Prednisone, which is a steroid (corticosteroid not anabolic steroid). Most BMT patients take it at some point, but until now, I had managed to avoid taking it. It was prescribed for me last fall, but after filling the prescription (but not yet starting it), my symptoms eased and the doctor said not to take it. It’s a drug that scares me a bit because it can have a lot of unintended effects (nausea, dizziness, depression, anxiety, sleeping difficulty, increased appetite, increased hair growth, etc.), and should not be taken over long periods of time. She is hoping that after a week of a fairly high dose, she can start tapering it off.

I started taking the Prednisone yesterday morning, and by evening I thought I noticed less muscle soreness and a decrease in the swelling. However, I didn’t want to get too excited because it might be because of activity level or something. However, this morning when I woke up, I definitely had less muscle soreness than I’ve had in close to 2 months, plus the swelling in my limbs definitely seems to be somewhat reduced. Additionally, I haven’t noticed much at all yet in the way of side effects. I am therefore allowing myself to be encouraged that the problem is GvHD and that we can overcome it soon. I think the theory is that if we can get the Prednisone to knock it down, that the Cellcept will then keep it under control. Of course my hope is that before long they will start to wean me off the Cellcept again, but I also suspect that when they do so, it will be more gradual than before (which was reducing by 1 pill per day per month) which would mean I’ll probably be immune suppressed into the spring or summer at least. Although that is disappointing compared to hoping I’d be off it all by now, I would look at it as a temporary delay which is not that long in the context of how long it’s been and how long it could be. I also know however, that a chronic GvHD like this can go on for a long time.

The doctor did feel it necessary to add a warning that increasing the immune suppression not only suppresses the graft versus host (GvHD), it also suppresses the graft versus leukemia effect. She said that really believe my disease is in full remission since all the chimerism studies have shown 100% donated bone marrow, but that if there were any leukemia lurking, it would have a better chance at making a comeback. I also feel pretty sure that the disease is gone, so I’m not giving much energy at all to worrying about that.

The doctor says the GvHD may not account for my low pulse oximetry (blood oxygen saturation), so she is scheduling me for a CAT scan of my chest to make sure there isn’t something else affecting my pulmonary function.

Stay tuned, and thanks again for your thoughts and prayers.

Love,
Justin

Month 15, part C

2005-11-20T23:39:00.000-05:00

It’s been another week of test results that seem to reveal nothing about the cause of my current physical problems. While there are things in the blood that indicate whether the kidneys are functioning properly (and these things seemed normal recently), the 24 hour urine test is kind of the gold standard because it shows what the kidneys really do for a day. The results of this test still showed normal functioning, as did the extra blood tests which I had but don’t know what they were. This is good news, but means the medical team remains stumped by condition which, while it doesn’t seem to be getting worse right now, also doesn’t seem to be improving.

..... 2 wks ago current normal
.....---------- ------- ---------
WBC.. 7.4 ...... 8.0 ..... 4 – 11
Hgb.. 11.2 ..... 10.9 ... 14 – 18
Plt.. 281 ...... 301 ... 150 – 400

The only change this week was to bump my immune suppressant (Cellcept) again, this time up to 3 pills (1500 mg) per day. So I’ve gone from 2000 mg in July, to 1500 in August, to 1000 in September, to 500 in October, back to 1000 last week, and 1500 this week. This is quite disappointing to me because it felt like I was really close to getting off my meds, and now I’m guessing it will continue for at least several more months. The doctor tried to be reassuring by telling me that Cellcept is a relatively mild immune suppressant and that people who have had organ transplants have to stay on immune suppressants for the rest of their lives. It didn’t feel terribly reassuring. The doctor doesn’t even know that GvHD is the problem, but looks at the decrease from 2000 mg to 500 mg in 3 months as a rapid taper after a year at 2000 mg. The physician’s assistant said she felt like my previous doctor (who left just as I started the taper) had been quite cautious about reducing the Cellcept because my stem cell donor was female and he feared a more severe GvH reaction. My current doctor just looks at the taper itself and considers it aggressive, even though my body didn’t seem to react badly for 3 months.

My doctor is clearly frustrated, although in a very different way than I am, and says she thinks about my case every day. When I go in on Wednesday of this week, I’m going to ask whether they have consulted with any other specialists. It seems like someone should be able to figure out what’s going on. My blood tests this week include a couple of extras that I think are for checking out other glands like the adrenal and pituitary (or maybe pineal), but it sounds like they are getting kind of far down their list of things they think could be the problem.

Meanwhile, I’m trying really hard to stay positive and not get discouraged; although the truth is that I’m finding it harder and harder. I keep reminding myself how fortunate I am in so many ways, and I know that things could be much worse. I’m just ready to get better. I’m also getting tired of complaining, even though this posting undoubtedly seems full of it.

Any and all prayers and positive thoughts are still very much appreciated.

Love,
Justin

BTW – today marks 15 months from the transplant.

Month 15, part B

2005-11-11T17:13:00.000-05:00

I went for an echocardiogram and PFT (pulmonary function test) on Wednesday, and then to the clinic on Thursday. The echo was interesting – it’s pretty much a sonogram of the heart, and the PFT was not as bad as I feared.

At the clinic on Thursday, I feel like I got good news and not so good news together in that they haven't found anything wrong, and they seem completely stymied by what’s going on. The good news is that my heart, lungs, thyroid, liver, and kidneys all seem to be working fine, and my muscles apparently are not actually being destroyed or breaking down. It was a relief to find these things out because there was a part of me that worried that one of these actually was suffering damage. I know some other BMT survivors who do have damaged lungs for instance that will never fully recover.

I had one other test after my clinic appointment, and that was some kind of Doppler in my upper and lower extremities to make sure I didn’t have clots that were the source of the problem. The doctor considered it very unlikely that I would suddenly have clots in all my extremities at the same time (she would have been much more suspicious if the fluid retention was not so symmetrical), but since they have no idea what’s going on, they wanted to rule out one more thing. The tests confirmed that my vascular system is clot free. BTW, I asked the vascular technician what was Doppler about the test, explaining that I know what the Doppler effect is and wondered how it played a part. She told me that the tests showed blood flow in the veins especially after she squeezed in a way to see the blood reverse direction momentarily. In other words, I didn’t really get my question answered although I imagine that the Doppler effect is used to gauge blood flow somehow. Once again, to me it looked just like a sonogram.

Next is a 24-hour urine test from which it again sounded like they don’t expect to see much because the blood labs already tell them much of what they need to know about kidney function, etc. She also prescribed a low level of a diuretic to try to ease my discomfort and see what effect it has, as well as bumping my anti-rejection drug back up to 2 pills a day from one. The reasoning behind this is that the onset of the problems seemed to coincide with cutting back from 2 pills to one in October.

I'm sure we'll figure it out and I can continue a positive recovery, and in the meantime, I'm working at not being discouraged by a dip in the road.

Love,
Justin

Month 15

2005-11-06T23:59:00.000-05:00

After months of what seemed like a relatively straight (although not steep) line up in my recovery from the transplant, it seems there has been a dip in the road. The dip is not back toward my disease at all – my blood counts are still good as seen below.

..... last month current normal
..... ---------- ------- ---------
WBC.. 5.9 ...... 7.4 ..... 4 – 11
Hgb.. 11.5 ..... 11.2 ... 14 – 18
Plt.. 231 ...... 281 ... 150 – 400

Starting sometime around my last clinic visit a month ago, my muscles started being sore every day. At first, I thought it was because of tennis playing or something, but then we had a week of rain when I didn’t do much exercising, and my muscles were still sore or achy every day. It seems worse when I just get up in the morning or after other periods of inactivity like when I get up after sitting for a while. It seems better for a while when I use the muscles for some kind of exercise, but then they sore up again. It’s seems like it’s all my large muscles (and some of them are massive guns J) like my arms, legs, back, etc., and not my joints. Over the last few weeks, I also have definitely been getting winded easier. I can now do little without getting exhausted.

When I went in for my clinic visit on Thursday, I had gained 10 pounds since the month before (which really surprised me), and they noticed that my pulse ox was definitely low. The pulse ox is really some kind of saturation level of oxygen in the blood and it should be up near 100%. Mine is usually in the 96 – 98% range, but on Thursday, it was at 90%, which is too low. They had me walk up and down some steps and up and down the hall for a few minutes (which got me breathing pretty hard), and the pulse ox remained at 90%. I thought it would go up at least a little and commented to that effect, to which they responded that at least it didn’t go down. They also noticed that I was retaining a lot of fluids. When they pointed out how swollen my arms and legs were, I was blown away because it was so obvious and I hadn’t noticed it before they pointed it out. Looking at my swollen ankles might lead you to wonder if I was pregnant! I think that would also at least partially explain my weight gain.

After asking me questions, the doctor (who was a new doctor that I had not yet met), started thinking out loud and said that while it might be GvHD, because it can attack anything, it also might be something like a thyroid that has been thrown out of whack in a delayed reaction to chemotherapy. Apparently, the thyroid is the primary regulator of all sorts of bodily functions. After my appointment, they sent me over to the hospital for a chest x-ray. I am also now scheduled for an echocardiogram and a PFT (Pulmonary Function Test) on Wednesday. The PFT I took before my transplant was by far the most strenuous and uncomfortable test I had to endure. Testing my breathing sounds like it should be easy, right? Well, it’s very intense and long. The doctor on Thursday said, “You remember, the test where they yell at you.” The chest x-ray was clear as expected, and I’m sure there will probably be other tests after the ones on Wednesday. I’m scheduled for another clinic visit on Thursday.

So I’m not in a terrible state, but it is a bit discouraging to feel like I’m backsliding a bit after feeling like I was so close to getting off my meds altogether. It’s not fun to be achy all the time, out of breath whenever I exert myself at all, retaining so much fluid that I feel like an over inflated balloon, and still not enjoying the taste of food (getting of the anti-fungal drug didn’t seem to help at all with that), but I’m not suffering a great deal. I’m still certain that the current problem will be diagnosed and treated and I will feel like I’m back on the road to recovery.

To follow up on last month, I did participate in the bone marrow transplant orientation meeting last month and I found it quite rewarding to be there with people (along with families) who are about to go through the process to offer my experience about what it was like, and so they could see that one can come out on the other side with some level of normalcy (I can fake normalcy pretty well J).

I will write here again when I have news, which I hope will be pretty soon.

Love,
Justin

Month 14

2005-10-07T13:29:00.000-04:00

I’ve decided to stop trying to count days post transplant and start counting months instead. It’s too much trouble to try to figure out the number of days, and I’m guessing a large percentage of those reading this and paying attention to the number of days do some kind of translation of days to weeks/months/years anyway. At my clinic appointment yesterday, I got the following blood counts:

..... last month current normal
..... ---------- ------- ---------
WBC.. 6.0 ...... 5.9 ..... 4 – 11
Hgb.. 11.0 ..... 11.5 ... 14 – 18
Plt.. 234 ...... 231 ... 150 – 400

These counts are all pretty good even though my hemoglobin count shows me to be slightly anemic and this may be a permanent condition. After factoring in that my liver still seems to be doing well while my kidneys seems slightly stressed, the doctor cut back not only my Cellcept from 2 pills a day to 1, but also my anti-fungal drug altogether. The hopeful aspect to that is that it might be the one causing my taste problems which actually seem to have gotten worse lately.

I asked both the PA and the doctor about how quickly I could be weaned from my other meds once I am off the immune suppressant and got two somewhat different answers. The PA said that because it will likely be in the Nov/Dec timeframe which is cold/flu season, they may stick with some of the meds a bit longer than if it were some other season. The doctor didn’t express that reluctance and, like I said, took me off one of the other drugs already. In the end, the doctor makes the determination, so I am glad he sounds a bit more aggressive in terms of weaning because I am anxious to be off meds.

I’ve been exercising even more, and while I can tell I’m still not back to where I was and want to be again in terms of fitness, I certainly feel like I’m continuing to improve. And after some confusion among the BMT clinic, my company’s HR staff, and its long term disability insurer, it looks like I’m about to get back on the payroll as a regular full time employee.

I told my social worker at the clinic that I would be interested in participating in orientation sessions for people who are facing a bone marrow transplant (along with their families) as someone who has been through the ordeal. She gave me a list of upcoming dates when there would be such sessions if needed (they don’t always have enough prospective transplantees to necessitate an orientation) and I am going to let her know which of them work for me. I would like the chance to help in this way if I can.

Hanging in, and still getting better.

Love,
Justin

Day 384

2005-09-08T21:31:00.000-04:00

As you might be able to discern from the blood counts below, my system seems to have adapted to the decrease in the anti-rejection drug (Cellcept) without a problem. This doesn’t surprise me because although I had a cough most of the month, I really didn’t seem to have any of the GvHD symptoms (like intestinal cramping) and continue slowly but surely to feel better.

..... last month today . normal
..... ---------- ----- ---------
WBC.. 6.9 ...... 6.0 ... 4 – 11
Hgb.. 10.8 ..... 11.0 . 14 – 18
Plt.. 217 ...... 234 . 150 – 400
AST.. 31 ....... 34 ... 10 – 42
ALT.. 23 ....... 17 ... 10 – 40

After having the Cellcept reduced from 4 pills a day to 3 last month, another pill per day was subtracted from my daily regimen so that I am now down to 2 pills a day. This keeps me on track to possibly be off all my meds in another 2 or 3 months. Woo Hoo!

I’m working pretty much 40 hours a week now and will soon be officially full time again.

I still run out of breath and energy way too quickly while doing something like playing tennis, but I still am hopeful that I will be able to train my way back to some semblance of fitness. My PA (physician’s assistant) says I may remain slightly anemic for the rest of my life. At least one of the doctors seems to believe that some of the meds may be suppressing the hemoglobin. Either way, I think I can improve my endurance.

The other thing that continues to be a real drag for me is that I still don’t enjoy eating because much of what I eat doesn’t taste good to me. This seems to apply especially to some of the things I used to like the most like meat, nuts, potato chips, etc. It’s hard to describe how hard this is, and I think it’s hard to imagine if you haven’t experienced it. You can take my word for it, it’s not fun. However, I’m hopeful that when I’m off my meds, this will also improve.

I’m starting to circulate more, doing things like going to church, weddings, meetings, etc. In doing so, I realize that there are a lot of acquaintances I haven’t seen in over a year. The reaction of these people (who say something like how good it is to see me), fills me with warmth, gratitude, and humility. I’m a lucky guy.

Continued improvement with a more normal life a distinct possibility in the near future is as much as I could ask for. Well, I could ask for more of course, but I won’t; I’m grateful for what I’ve got.

It will probably be another month before I write. My next clinic appointment is October 6.

Until then, all my love,
Justin

Day 356

2005-08-11T23:50:00.000-04:00

I guess I have a bit of catching up to do. Today I had my regular clinic visit since my last entry, but last week, I also went in for my one year bone marrow biopsy and aspiration. That’s right, I getting darn close to my one year anniversary – notice what day this is.

Although I’ve had a cold for at least 2 weeks (mostly coughing) that makes me feel kind of lousy, I’m really doing pretty well overall. I feel like I doing well and the doctors confirm that they are happy with where I am.

.....last month last week today normal
.....---------- --------- ----- ---------
WBC..... 5.0....... 5.5.... 6.9.. 4 – 11
Hgb.... 11.1...... 11.3... 10.8. 14 – 18
Plt... 199....... 235.... 217.. 150 – 400
AST.... 43................ 31... 10 – 42
ALT.... 46................ 23... 10 – 40

So my counts are all good, including my liver enzymes being well within the normal range for the first time in a while. I asked if my WBC might be up a bit because of my cold and the doctor said maybe, but it’s a minor spike. I’m still trying to get in shape and I’m finding I have to be more patient with it. I’ll think I’m doing better, and then I get discouraged because the next time on the tennis courts, I tire quickly. I have excuses like the heat and my cold, but I want to be able to do more without getting so winded.

The bottom line is that the doctor has started cutting back on my anti-rejection drug. I’m going from 4 pills a day to 3, and he expects to be able to cut back one pill a month going forward, which means I could be off altogether by November! I sure hope so. I saw a doctor today that I hadn’t seen in the clinic before (except that he finished my biopsy last week – more on that below). He says my slight anemia and my taste problems (which are persisting) could easily both be due to meds. He says several of my meds could affect my hemoglobin and another could affect my taste. This is in contrast to the last doctor who thought they might both be due to GvHD. Neither could state their case with certainty, but it sure seems like an indication that there is still a lot they don’t know. The doctor today also said my cold may be hanging on because of my immune-compromised state.

I probed the staff about the possibility of me going to see my son in the Peace Corps in Guinea in December, and they said that while I might not be immune compromised any more, the inoculations that are required might not be effective so soon after coming off the meds, so I could possibly not be protected from malaria and yellow fever, etc. I’m sure it’s not worth the risk, so maybe next year.

My bone marrow biopsy and aspiration I think may have been my ninth. At the BMT clinic, it’s usually the Physician’s Assistants (PAs) who do them, and this time I got one that hasn’t done mine before because my regular PA was not in. The one who did it is very nice and not very big – probably something like 5’4”, 119 lbs. I warned her that everyone who does the procedure on me comments that my bones a very hard, and she did fine on the aspiration (which is done first). When she went in again for the biopsy, she tried once, got a stool to be able to put more weight on the needle and tried a couple more times, then summoned the doctor, who happens to be about 6’8” tall and didn’t need a stool. He got in pretty quickly but said the bones were indeed hard. I told the PA that I appreciated that she called in reinforcements so quickly when she had a problem, because I imagine some would stubbornly insist that they could do it. She said she is clear about not having patients suffer for a little bit her own self-pride.

I got the results of the chimerism studies of both the bone marrow and the blood today, and once again, they show 100% donated bone marrow, as they have all along. They clearly do not expect the leukemia to make a comeback at this point, and it will probably be at least a year before I would get another biopsy. Who knows – maybe I’ll never need another again.

That’s enough for now. I go back in September for my next appointment, so that’s when I will probably report again unless something happens in the meantime.

Love,
Justin

Day 329

2005-07-15T23:59:00.000-04:00

Yesterday, I had the first clinic appointment with my new oncologist, whom I like a lot. He’s seems very intelligent as well as kind and gentle. I told him that while I’m sad that my former doctor left, I’m glad to have him as my doctor now.

Overall, my counts were good:
WBC – 5.0, up from 4.1, normal and the highest it’s been in a while
Hgb – 11.1, down from 12, below normal of 13
Plt – 199, down from 238 and still at a good level
AST-SGOT – 43, down from 68 (below 42 is normal)
ALT-SGPT – 46, down from 92 (below 40 is normal)

My liver enzymes are so close to normal and all my other counts are good. My new doctor agrees with my former doctor had suggested about just leaving me at current levels of anti-rejection drugs, and that in a month or so, we’ll probably be able to start the weaning process again. In a month, I’ll be close to a year from the transplant, so they’re also going to do another bone marrow biopsy/aspiration (woohoo!) to do chimerism studies.

Slowly but surely I really feel better and better over time. I’ve started exercising more (mostly tennis and biking) because it became clear I was just out of shape from almost total inactivity for over 6 months. I’ve already noticed an improvement in my endurance and rate of recovery from getting winded, and it feels good.

My only complaints are mild stomach cramps occasionally and my taste problems that have led me to not enjoying eating much at all anymore. It may be some kind of payback from my enjoying eating too much before the transplant, but it still sucks to not even enjoy foods I like (or once did). I do get hungry and I do eat because I know I should, although I think I could easily skip many meals if I didn’t think it would be harmful. My new doctor says that theoretically, GvHD could attack any part of the body, including taste buds; and he’s seen it occasionally before. I believe the condition will improve over time, but even if it doesn’t, if that’s the worst I suffer from GvHD from here on, I’ll consider myself quite lucky.

I’ll probably report again sometime in the middle of August. Thanks again for all of you concern, support, and love. I couldn’t have made it this far without those things.

Love,
Justin

Day 308 - goodbye to Dr. T

2005-06-24T21:48:00.000-04:00

I had another clinic appointment yesterday, my last with Dr. T, the oncologist who took me all the way through my transplant experience to this point. I will miss him.

WBC – 4.1, up from 4.0, normal
Hgb – 12, up from 11.4, higher than it’s been in a while and still below normal of 13
Plt – 238, down from 248 and still at a good level
AST-SGOT – 68, up from 54 (below 42 is normal)
ALT-SGPT – 92, up from 69 (below 40 is normal)

My blood counts were OK, except that my liver enzymes went up some more (wrong direction). They were up enough that the doctor bumped up my Cellcept (immune suppressant) back to where it was last month. He’s not too concerned, however, because his experience leads him to believe that the liver gets stressed to a certain level and stays there for a while, whether the immune suppressant is adjusted or not. It would then stay there until the grafted immune systems just gets “worn down” is the phrase I think he used, at which time it would just give up attacking the liver. He’s recommending just leaving the Cellcept level where it is for another month or two and then try cutting it back again. I asked him if the level of immune suppressant affects how quickly the immune system gets worn down and he said it didn’t.

He seems to think my getting winded is due more to being out of shape from getting no exercise for 8 months or so than to being anemic. I guess I’ll have to make more of an effort to get some aerobic exercise.

The doctor and the PA both think my taste problems (no food tastes good) are not due to meds. It’s just one of the unpredictable things about going through this process – some people have negative taste experiences and some have enhanced taste experiences. I just hope it gets better sometime so I can enjoy eating again.

Lastly, I feel like moaning a bit about my HMO. Basically, they have been good and have paid for everything except my copays for meds and visits to a specialist (which add up pretty quickly themselves). What I am quite unhappy about is that starting earlier this month, they are requiring me to get my blood labs drawn at an independent lab instead of at the BMT clinic. This means another trip on another day to a lab that is not easy to get to, requiring more time, another car trip, remembering to get it done, remembering to get a prescription for it at my clinic visit prior, remembering to get them to include the diagnosis code on the scrip, remembering to take the scrip, waiting for the results when I go in for my clinic visit because they have to call and have them faxed, which adds up to an hour to my clinic visit, plus the fact that at the clinic, they like to have blood smears so they can look at the blood cells, and there are no smears. And if, for some reason, the results aren’t available when I go for my clinic appointment, it becomes a wasted trip and I would have to reschedule. I guess it is all about saving the HMO money (isn’t that what HMOs are all about?), but I’ll wager the amount they save withers in comparison to what it costs me in time, money, and inconvenience. Oh well. I plan to appeal to someone at the HMO, but have very low expectations about the odds of any satisfaction. I guess I’m lucky to be around and healthy enough to be irritated.

Love,
Justin

Day 304 (10 months)

2005-06-20T22:56:00.000-04:00

OK, I admit to being really late with this report on my clinic visit from 11 days ago. I’m tempted to blame the delay on being away on vacation (which I was), but the truth is that I had plenty of time to write it; I just didn’t get around to it. It’s also true that there is some disinclination to hurry up and report when the report seems boring.

My blood counts are slightly worse than they were 2 weeks prior, but still generally pretty good. My liver enzymes rose slightly (not good) to where the doctor decided not to cut back at all on my anti-rejection meds at all, although they didn’t rise enough to cause him any serious concern.

WBC – 4.0, down from 4.3, but still in the normal range
Hgb – 11.4, down from 11.6 and still below normal of 13
Plt – 248, down from 279 and still at a good level
AST-SGOT – 54, up from 38 (below 42 is normal)
ALT-SGPT – 69, up from 44 (below 40 is normal)

Today marks 10 months since my transplant. Being at the Jersey shore on vacation and attending an annual picnic that occurs on June 19 each year are reminders that one year ago when we were at the beach and at that picnic, I had just been diagnosed with MDS and told I need a bone marrow transplant. I don’t remember thinking then about how I might feel one year out, and probably was thinking much more about closer time frames and what I would be going through. However, looking back a year from here, I think if I had given it much thought and compared that to how I feel today, I would have been happy first of all that I was still around, and additionally pleased to be feeling as well as I do. (OK, if you carefully analyze that last sentence, it may be confusing and a bit nonsensical, but maybe you know what I’m trying to say).

After 10 months of deprivation, I’ve eaten several salads and had raw onions (I’m a big fan of onions) recently with no apparent ill effects. While I’m glad to be able to eat more things, I’m still bummed by the fact that almost nothing really tastes good to me these days. Still, the greater variety is good.

I still get winded easily to such an extent that I’m pretty sure that it is more than being out of shape. It is probably due at least in part to being still somewhat anemic. At any rate, I hope it’s not a permanent change and that eventually either I won’t be anemic or that somehow I will be able to overcome whatever it is that is making me feel winded. I was talking to a friend who had a bone marrow transplant over 11 years ago who said that she remembers she had to get used to a new “normal”. I think that’s a good way to put it, and I told her that it’s probably easier for a 53 year old to get used to the idea of new normals because most of us have already noticed that we have to get used to them, whereas for a 33 year old (which is how old she was when she had here BMT), it could be a major adjustment.

I have another clinic visit this Thursday and it will be my last one with my oncologist before he moves on to bigger and (hopefully) better things in Augusta, Georgia. I’m happy for him, but a bit sad for myself. I am also grateful that he helped me through what I hope is the worst of this whole ordeal.

Thanks for staying tuned in for all these months. I’ll try to be more diligent about reporting in a timely manner.

Love,
Justin

Day 279

2005-05-26T23:59:00.000-04:00

The regular biweekly clinic visit went well today. My blood counts were good with my WBC being as high as it’s been in months.

WBC – 4.3, up from 3.7
Hgb – 11.6, down from 11.7 and still below normal of 13
Plt – 279, down from 280 and at a good level
AST-SGOT – 38, up from 36 (below 42 is normal)
ALT-SGPT – 44, up from 37 (below 40 is normal)

The doctor said one of the liver enzymes being slightly elevated is not something he is terribly concerned about right now. Also, my magnesium level was good after having been a week without taking any supplemental magnesium. They were happy enough with my levels, that they’ve cut back my Cellcept (which is my remaining anti-rejection med) from 4 a day to 3.

As for my questions I wanted to ask (some I mentioned in my blog entry from Day 270), I got the following:

The doctor is satisfied with the amount of GvHD I’ve had. However, he believes it is likely I will have more down the road, and while he really can’t predict what or when, he said he’d rather it would be a bit more liver problems than skin problems because the skin problems tend to be tougher to treat.
I can start to modify my dietary restrictions in that I can start eating fresh fruits and vegetables, but he is still wary of restaurant offerings, because one can’t tell how long the stuff has been sitting out and who’s been breathing on it, etc. I get the sense he’s just generally uncomfortable about it, even for himself. But I can have fruits and vegetables at home if they are cleaned properly. The human contact restrictions I need to keep observing until I am off of the immune suppressants. This is hard partly because it’s just hard for me, but also, since I haven’t been getting sick at all, it’s tempting to relax too much about avoiding crowds and hugging people.
I do have to be careful about the sun because of both meds and GvHD. I think I can do that.
As for my odds of cure, he didn’t really get specific about numbers even though he indicated that my odds now are better than they were. When I asked about the likelihood of the leukemia making a comeback, seeing how there has been no evidence of it since August, he is again cautious and says he likes to see 2 years of chimerism studies showing no residual disease in the marrow and blood before he has a lot of confidence about the leukemia being completely gone.
Finally, I asked him about the new drug called Revlimid that has been in the news lately as being so effective in treating Myelodysplastic Syndromes (the disease I had) that the doctors studying it are somewhat stunned. He said that with the form of the disease that I had (Refractory Anemia with Excess Blasts or RAEB), it is not likely that it would have been effective for me because it seems to be much more effective against the milder forms of MDS than the more severe ones like RAEB.

So while I hear the doctor when he says he expects me to have more GvHD and believe him, I really am just enjoying that I currently feel pretty good and that I feel like I’m improving, even if slowly. If I get more GvHD, I deal with that then.

Love,
Justin

Day 273 - the catheter comes out

2005-05-21T12:59:00.000-04:00

I'm actually writing this on Day 274. Yesterday (nine months to the day after my transplant), I had the Hickman catheter removed from my chest. It may not sound like much, but it’s even surprising me how liberating it feels to be without it. It was placed in September after the original Hickman catheter was removed because of a blood infection I got shortly after my transplant, followed by a PICC (peripherally inserted central catheter) which goes into a large vein in the arm but is only used for a couple of weeks. The catheter is used to draw blood, but the primary reason to have one is so that IV drugs can continue to be infused for a long period of time. The original catheter was used for meds in the hospital, for the chemotherapy, and for the stem cell transplant itself. Shortly after I was released from the hospital (for the second time – after my blood infection was under control), I used the catheter to infuse magnesium because my magnesium levels had been depleted by one of the immune suppressant drugs I was taking, and then to infuse saline solution because I couldn’t seem to hydrate sufficiently through drinking alone. The last infusions I got through my catheter were in early February. Since then, the clinic would get blood labs through the catheter and that was about it. The doctor left the catheter in because it was not causing problems and he thought there was a decent chance I would need it again for meds.

A central catheter requires care an attention. It is an excellent means of access to the blood stream for both meds and drawing blood, and is also an excellent means of access for germs, etc. The entry site needs to be kept clean and dry, meaning that I had to protect it whenever I showered and change the dressing three times a week, a process that took a bit of time and required 2 pairs of surgical gloves (one for removing the old dressing and one for everything after that), 3 alcohol swabs and 3 providone-iodine swabs applied in a specific way, and then a new dressing – all while diligently keeping the whole site completely sterile. I also had to flush each of the lines with heparin every day to keep blood from clotting in them and change the caps once a week. In the last couple of weeks, not only have I been feeling better and had my meds reduced, the weather has gotten warmer and I have started becoming more active with things like tennis and volleyball. More heat and more activity means more sweat and I found several times that the sweat would cause the dressing for my catheter to become unstuck which made me nervous. I therefore asked the doctor if I could get the catheter removed and he agreed.

ALERT – I’m going to get a bit graphic in this paragraph about how the Hickman catheter is inserted and was removed, so if you’re squeamish and don’t want the graphic details, you can skip the rest of this paragraph. The Hickman® catheter is made of very flexible rubber tubing that is inserted through the skin a couple of inches below the collar bone and then tunneled up to the neck, where another small incision is made so the doctor can extend the catheter into the jugular vein and thread it down toward the heart. My particular model of catheter also includes 2 cuffs just under the skin where it enters. The cuff closest to the surface was filled with antibiotics to prevent infection. The other cuff is standard on the Hickman catheter, is made of Dacron and is called by some the “fuzzy” cuff because it is like the fuzzy side of Velcro. The skin actually heals in and around this cuff so that it almost becomes part of the body. The tubing coming out of the body often is split into 2 or 3 lines (my first was a triple lumen and my second was a double lumen) and then there are caps on the end that are essentially valves to keep things from entering and exiting the body when they aren’t supposed to, and clamps that closed off the tubing except for when one wants to get something through. I thought the removal of the catheter would be fairly simple, a small incision where it entered the skin and then pull. However, because of the double cuff (and probably the length of time it was in), the doctor had to dig and cut for about a half hour to get it out. He said it was more difficult than most. It wasn’t fun, but it also wasn’t terrible painful even though only a local anesthesia was used. He said he doesn’t stitch the small hole where the catheter went in because it usually heals better without stitches, but the other hole he had to make to disconnect the cuff required a couple of stitches to close. He put the stitches under the skin and used ones that will dissolve and get absorbed, so I don’t have to go back to have them removed. When I showered today, I found that the second incision was about 2 inches above where the catheter entry was which surprised me a little. With all the digging he did, I was also pleasantly surprised to see that the second incision was still quite small. However, I also noticed that I had a large bruise around the incisions that is about 4 square inches. It didn’t surprise me much because I was actually fairly uncomfortable during the procedure from his pushing and pulling. I also realized that my worrying for 8 months that if the catheter got pulled a little too hard it might rip out a little was somewhat needless worry because I now think that it would have been very difficult to get it to separate at all from where the skin had attached.

Anyway, although I still have to keep the site dry and clean for a few days until it heals completely, I look forward to being able to shower without worrying about the catheter. I also noticed smaller benefits that I hadn’t thought much about like when I went to bed. For 8 months, I have worn a T-shirt to bed every night (I don’t normally) with a strip that I cut from the top of a sock pulled up as high as possible on my shoulder into which I tucked the catheter lumens so I wouldn’t be lying on the clamps or accidentally pull the tubing too much. Last night, I didn’t have to do that. Add all of this together with some other small benefits of not having tubes hang out of my chest, and you have a formula for a pretty good feeling of relief and liberation. It’s adding to my sense of actually getting better and my hope of getting back to a more normal life.

Day 270

2005-05-17T16:19:00.000-04:00

I don’t know how my last entry wound up as Day 244, but I believe it should have been 251. This one is a delayed report of my last clinic visit which was last Thursday which would have been day 265. The news this time is that we’ve made what I consider to be a positive move on decreasing meds. My blood counts have generally improved even without adjusting meds (which may be affecting some of them), including my liver enzymes dropping into the normal zone.

WBC – 3.7, up from 3.5
Hgb – 11.7, up from 11.6 and still below normal of 13
Plt – 280, down from 281 and at a good level
AST-SGOT – 36, down from 37 (below 42 is normal)
ALT-SGPT – 37, down from 45 ( below 40 is normal)

As a result of my blood counts (especially the liver enzymes) being good and other symptoms like stomach cramping improving, the doctor cut me back on my immune suppressants. I was taking one pill a day of Prograf (tacrolimus), a drug I’ve been on since I started chemotherapy just prior to my transplant. He said to stop taking that drug, which leaves me on 4 pills a day of Cellcept, the other immune suppressant which I have been on since liver problems first arose in early February. He said that if I do OK over the next 2 weeks, he will then start weaning me off Cellcept as well. Being off Prograf means that this Thursday, I can also stop taking the magnesium supplement (4 pills a day).

This reduction of immune suppressant drugs is what I’ve been waiting for, and I consider it a very positive step. However, I have learned not to get my expectations too high, because there can be setbacks and new kinds of GvHD even years down the road.

The doctor said I am doing very well and commented that my sister (who donated the stem cells for the transplant) and I must be very close genetically because of how well things seem to be going 9 months after the transplant.

The questions I hope I can remember to ask him at my next appointment include things like the following:

Is he happy with the amount of GvHD I’ve had (remember that he has said all along that while he doesn’t want to see a lot of GvHD, he wants to see some because it increases the likelihood of a good amount of graft vs. leukemia)?
When can I start to modify my dietary and human contact restrictions?
How much do I have to worry about exposure to the sun (we’re planning a beach vacation in early June)?
Is he ready yet to adjust the odds of a successful cure up from 50 – 60 percent?

Since I’ve wanted to become more physically active, I’ve started doing more things like tennis, bicycling, walking, volleyball, and yard work, and with the weather getting warmer, I am also starting to sweat a lot more when doing these more strenuous activities. This is causing a problem with the dressing covering my Hickman catheter (central line) entry point into my chest in that the dressing starts to come off when I sweat. Since I haven’t used the catheter for putting anything into my blood since I stopped the saline infusions in early February, I asked my PA to ask the doctor if we can have the catheter removed. She just called back a few minutes ago and said that she got the green light for that and would try to set me up to have it removed on Friday. It will be so nice to get it out because not only do the tubes bounce around and get pulled when I sleep or play tennis and volleyball, I have to be careful to keep it dry when I shower, change the dressing 3 times a week, flush the lines with heparin every day, etc. Maybe not having tubes dangle out of a hole in my chest will also be one more thing to help me feel a bit more normal.

Love,
Justin

Day 251 (formerly posted as day 244)

2005-04-28T23:59:00.000-04:00

Not much in the way of new or unexpected news at today’s clinic appointment. My blood counts improved a bit and the doctor said I look good and am doing well. I told him I still have some GI stuff going on, so as I figured, he didn’t adjust my meds at all. He said that prednisone would probably take care of all my symptoms, so if I was terribly uncomfortable, he would start me on that. However, the cramping is not bad enough for me to want to start in on steroids. He also said it is tempting to want to eliminate the one pill of Prograf (an anti-rejection drug) that I’ve been on for some time, but experience tells him it’s best just to wait it out.

WBC – 3.5, up from 3.3 and seemingly good enough even if below normal
Hgb – 11.6, up from 10.9 and still below normal of 13
Plt – 281, up from 272 and at a good level
AST-SGOT – 37, down from 47 (below 42 is normal)
ALT-SGPT – 45, down from 52 ( below 40 is normal)

So all the counts improved a little. If both my liver enzymes (the last 2 listed) were below 40, and my intestinal cramps subsided, I think they would start weaning me off the immune suppressants.

When I was in the waiting room, I struck up a conversation with another BMT patient who said he is about 20 months post transplant and is still on a lot of meds including Cellcept, which is the other (besides Prograf) anti-rejection drug that I am on. His brother was his donor, and he said he had pretty severe intestinal GvHD starting at about 3 months post transplant. I was sorry to hear (for him and me) that he is still on immune suppressants after 20 months. That doesn’t mean I will be, but it reminds me I could be.

After he left, another BMT survivor whom I know a lot better (he is in our BMT couples group) showed up. He is almost 4 years post transplant and has just gotten some new GvHD attacking his lungs. He says he can’t even walk up a flight of stairs. I didn’t get to talk to him long, but he seemed pretty discouraged.

Both of these conversations were reminders how different everyone’s post transplant experience is, and that GvHD really can persist and flare up for a long time.

My hair is longer than it’s been in at least 30 years, and it’s still quite curly. In fact, that’s why it’s long – I’ve never had curly hair before, and I’m just having some fun seeing what happens if I let it grow out.

Love,
Justin

Day 238

2005-04-15T23:59:00.000-04:00

I went to my regular clinic appointment yesterday. My GI and emotional concerns that got me into the clinic last week have subsided and are much like they had been before, although I still feel a bit low and low on energy. My blood counts are very close to what they have been for quite a few weeks, so the doctor is keeping my meds at the same levels also.

WBC – 3.3, up from 3.0
Hgb – 10.9, down from 11.0 and still below normal of 13
Plt – 272, down from 281 and still at a very good level
AST-SGOT – 47, up from 41 with 10 – 42 being normal
ALT-SGPT – 52, up from 47 with 10 – 40 being normal

The last 2, which are the liver enzymes, seem to be hanging around just above normal. This and my GI cramping are both indications of GvHD that seem to keep the doctor from wanting to decrease any of my meds. He says that his experience leads him to believe that it doesn’t pay to rush things.

Despite having slightly lower energy levels, I am trying to get more exercise. The warmer weather has gotten me back to doing some bicycling and tennis, plus I played some volleyball for the first time in a long time. I like getting the exercise and I still get winded and tired quite quickly (due to some anemia as well as being quite out of shape).

I forgot to mention that at the clinic last week, my doctor told me that he is leaving to take a position heading up the cancer center at a hospital in Georgia (maybe the Medical College of Georgia). I have mixed feelings about this because he is one of the best doctors of any kind that I have ever come in contact with. I’m sorry to see him go for my sake and the sake of the BMT program here, but I’m sure he deserves the position and can maybe do more good for more people from a position with much greater influence. He will be around until the end of June and said he will be treating me right up to the end, but doesn’t know yet who will take over from there. My plan is to be on the home stretch then anyway, so it won’t affect me as much as his patients who have just had or are about to have their transplant. I am grateful that I will have had him treating me for about a year, including seeing me through the most difficult phases (I assume) of my disease and treatment.

Love,
Your getting-better friend, Justin

Day 231

2005-04-08T23:59:00.000-04:00

This is kind of an interim report and a bit more graphic in terms of some bodily functions, so if you don’t care to read such things, I’d suggest just skipping at least the third paragraph.

At the clinic, they always tell me to call if anything changes. Well, in the last week, three things have noticeably changed as follows:
My GI tract has been acting up a bit
I have a lower energy level
I felt like I had some emotional things going unlike anything I can remember

So I called them yesterday (Thursday) and they asked me to come in today. (Here comes the graphic part). It seems they are most concerned about my GI problems and have asked me to measure my stool output for the weekend because part of my report was that my bowel movements had become looser and more frequent in the last few days. Apparently, it can be considered diarrhea when the bowels are moved several times a day, regardless of the consistency. Measuring my output sure sounds like a lot of fun L.

Every time I go in to the clinic, I fill out a check box type questionnaire about whether I’ve had fevers or pains or itchy skin, etc., and one of the items at the bottom asks about emotional changes. I routinely just skip by that without thinking about it much, but remembered it after having a few days of emotional turmoil that included a day or two of significant sadness of unknown origin, and then reacting to something my wife said with a level of anger that was out of all proportion to what she said. I also remembered reading somewhere that emotional swings like that are not uncommon for transplant patients. When I talked about this with my caretakers at the clinic, the first thing they asked me was whether I was taking any steroids, which I am not. Apparently, steroids are known to often cause emotional roller coaster rides, but the other meds I am on do not generally do so. I have to admit to some ambivalent feelings about the meds not being implicated in my mood swings. On the one hand, I am glad my meds are not affecting me that way, but on the other hand, I sort of lost my excuse for blowing up at my wife.

After thinking about it for quite a while, factoring in that those emotional extremes are not something I remember ever feeling before, I’m starting to think of other things that are going on that are likely to play into such a state. To begin with, there is the difficulty of going through an extreme medical procedure like I have, including the chemotherapy, the transplant, and the recovery which is now in its eighth month and whose end is still some undetermined distance in the future. Along with that is realizing and dealing with the reality that the disease or the attempts to treat the disease could result in my death. But in the last few days, I have realized that there are also pictures I have of myself that have needed modification. I believe that we all have pictures about ourselves and the way we think life is supposed to be, and I also believe that those pictures while probably necessary, are usually, if not always, impediments to our spiritual growth because they can keep us in denial about the way things really are. Having to give up those pictures necessarily involves some level of pain because they are crutches that seem to help us deal with life. But they also occasionally need to be discarded or at least modified so that we can break patterns that no longer serve us. For example, I have long had a picture of myself as a healthy person. Now, for nearly a year, and actually for years before my diagnosis, I have been the sick guy. Sick enough that my health is the first thing people almost always ask me about. Or the first thing many people ask my wife about. I really do appreciate the concern and the love behind it, but it is also a constant reminder that I am now the sick guy. I am ready to not be the sick guy anymore. I’m ready to be the guy who recovered from leukemia and a bone marrow transplant. Sure, I’ll probably get tired of that as well, but for now, it appeals because it would be a move in a positive direction as well allowing a different perception of me.

Being the healthy guy or the sick guy must certainly be related to another picture of myself that I have struggled with consciously and subconsciously for a long time. That picture is the one that has me being a rock – the steady, reliable, unflappable guy. It’s a picture that I both like and find to be a burden. I like being seen as steady and reliable, but I also am painfully aware of what that sage, Paul Simon says about how a rock feels no pain and can be an island that never cries. That part fits not so well.

Well, I am rambling and probably boring you. Too bad; you could have stopped at any time ;-). I don’t need anybody to read this and it feels like it was kind of therapeutic to write about. It makes sense to me that everything together could easily add up to an emotional roller coaster, and that blowing up could even be cathartic. And yes, I recognize that I also seem to need reasons or excuses for my emotional extremes. Let’s call them explanations – that’s reasonable.

So much for a brief interim update. Overall, I’m still doing and feeling pretty well, and I still feel quite positive about getting cured and being a healthy guy again. If you’re reading this, I assume it’s because you care and your love and caring means the world to me.

Love,
Justin

Day 225

2005-04-02T11:59:00.000-05:00

This is going to sound a lot like my last post because not much has changed. All my blood levels are close to the same and once again, my meds have not changed.

WBC – 3.0 down from 3.1
Hgb – 11.0 up from 10.8
Plt – 281 up from 252 (and I believe the highest I’ve seen it in over 4 years)
AST-SGOT – 41, up from 33 with 10 – 42 being normal
ALT-SGPT – 47, up from 43 with 10 – 40 being normal

The doctor seems pleased with the way things are going and still wants my liver enzymes (AST/ALT) in the normal range before starting to cut back my meds. Plus, while my intestinal cramping is better than it was, there is still some, and he believes it is GvHD. He says that while it is tempting to rush the weaning from meds a bit, his experience tells him it’s better to not. So while I am getting more anxious to start weaning, I am trusting the doctor who has done hundreds or thousands bone marrow transplants, more than my own experience of not yet having made it through one.

Love,
Justin

Day 211

2005-03-19T14:15:00.000-05:00

I’m over 211 days post transplant (tomorrow is 7 months), I’m doing well, and I still have a ways to go before I can feel like things are returning to normal. At my clinic appointment on Thursday, not much had changed and the doctor decided to keep my meds the same.

WBC – 3.1, up from 2.9 (with a shot of Neupogen last week) and still below normal of 4 - 11
Hgb – 10.8, down from 11.0 and still below normal of 14 – 18
Plt – 252, up from 202 and in the normal range
AST-SGOT – 33, down from 41 with 10 - 42 being normal
ALT-SGPT – 43, down from 52 with 10 - 40 being normal

My WBC and Hgb may still be depressed because of meds. One of the liver enzymes is in the normal range, and if the other drops a few more points, it will also be in the normal range and I may be able to start cutting back on my anti-rejection drugs.

I feel basically pretty good, although there are definitely some signs of GvHD and some other effects from either meds or just the trauma that my body has had to try to cope with. My intestinal cramping has gotten a bit worse, although it comes and goes. That could be due either to GvHD or meds and after describing it to the doctor, he decided it is probably GvHD. And while my energy is way better than it was shortly after the transplant, I still get winded easily and don’t have nearly the stamina I did before (and would like to have again).

The doctor seems pleased with my current condition. I think he is glad that I have some GvHD, and that it is not severe – at least not yet. I remember that I learned that GvHD is divided into acute and chronic categories with that showing up in the first 100 days being acute, and that showing up after 100 days being chronic. That means I had very little acute GvHD, but do have some chronic. I wonder how arbitrary that 100 days is, and wonder if 100 days was chosen when fully ablative transplants were the norm. I get the sense that with the mini-transplants like I had, the GvHD tends to show up quite a bit later than it did when the transplants were fully ablative. I’m also reminded that the chronic GvHD can show up almost any time, even years after the transplant; meaning that even when I start to feel normal again and get off my meds, I still may have to deal with it down the road. I’ve talked to other people that have noticed effects years later, but of course they wonder if the problems are transplant related or just symptoms of getting older. It is often impossible to know.

Still, I’m grateful to still be around and feel relatively healthy. I’m planning to continue to improve and get more active. As I’ve said many times before, I am also grateful to family and friends (especially my wife) who have been so supportive and understanding throughout. Of course, I also continue to be grateful to my sister, who shared her stem cells with me. They seem to be doing their job quite nicely.

Love,
Justin

Day 195

2005-03-03T21:57:00.000-05:00

Another regular biweekly clinic appointment happened today and all seems to be going very well. Although I didn’t expect the results of the bone marrow biopsy/aspiration until next week, they had the results and for the third time (out of three) since the transplant, the chimerism studies (including DNA) show 100% donated bone marrow. The doctor seemed more pleased with the results this time than he was the other 2 times. I figure it’s either because he often sees the results after 6 months show other than 100% donated marrow even after earlier results showing 100%, or else he was just in a better mood today than earlier. My blood counts were OK.

WBC – 2.9, down from 3.3 last week and definitely sub-normal
Hgb – 11.0, down from 11.1 and a little below normal of 14 – 18
Plt – 202, down from 220 and in the normal range still
AST-SGOT – 41, down from 49 with 42 being normal
ALT-SGPT – 52, down from 76 with 40 being normal

The last 2 are liver enzymes and lower is better. They are both way down from 4 weeks ago when they were 65 and 115 respectively. Because they are down so far, I asked the doctor if he was considering cutting back on the Cellcept which he added because of the liver distress. He said he was going to leave it at the current level (4 pills a day) until the enzymes are down to normal levels, and then he would try cutting by one pill every 2 weeks. All the other meds are also staying at their current levels.

Dr. T said I was doing very well, as enthusiastically as I can remember him saying so. I said to him that I was guessing we were just waiting for my new immune system to become accustomed to its new host and he agreed. He said he hoped to start getting me off my meds in 2 or 3 months. In one sense, it seems like a bit of a long time because it comes after 6+ months of post-transplant recovery already. But mostly, I feel like if it happens that soon, I’ll be ecstatic. Two or three months can pass rather quickly these days.

Interestingly, I got a really runny nose on Sunday, but by Tuesday, it was pretty much gone and hadn’t turned into a sore throat or coughing or sinus congestion or anything. I’m not sure whether to credit the part of my immune system that is functioning or the myriad medications I’m on or both, but I’m grateful that I’m still not getting sick. I’m also still trying to be cautious about crowds and germs, and feel like I need to guard against getting lackadaisical due to feeling so good and not getting sick.

Your friend, getting better,
Justin

Day 190

2005-02-26T23:59:00.000-05:00

I had a bone marrow biopsy and aspiration yesterday and it was probably the least painful that I’ve had yet (it is either the eighth or ninth). The most painful part was the local anesthetic shot.
They also did a CBC, which they do every time I go in. My blood counts were very close to last week’s, down slightly.

WBC – 3.3, down from 3.6, normal range is 4 – 11
Hgb – 11.1, down from 11.2, normal range is 14 – 18
Plt – 220, down from 240, normal range is 150 – 400

Although I didn’t get to see the doctor this time, I got a nurse to give me a copy of my lab results and I was very glad to see my liver enzymes were down significantly. My AST-SGOT was down to 49 from about 65 with 42 being normal, and my ALT-SGPT was down to 76 from about 115 with 40 being normal. I’m not letting myself get too excited this time around and I’m sort of making this up, but maybe if those enzymes stay down, they will cut back on my Cellcept (anti-rejection) this week (if they wean enough, do I become a weanie?). Maybe it means my new immune system is backing off on its attack of its host. I can hope without getting overly excited.

Meanwhile, I continue to feel quite good. I seem to have a runny nose today and hope it doesn’t get much worse.

Love,
Justin

Day 182

2005-02-18T17:02:00.000-05:00

I went to my clinic appointment yesterday (now normally biweekly) and things went well. I noticed that I feel good now when my blood labs show nothing is worse. Compared to 2 weeks ago, all my blood counts were up slightly, my liver enzymes were very close to the same (a bit high), and my creatinine level was fine (meaning my kidneys are doing OK). While the hemoglobin is up a bit, which is good, it is still below normal of 14 and I still get winded easily. Then again, maybe I’m just horribly out of shape.

WBC – 3.6, up from 3.2
Hgb – 11.2, up from 10.2 (and the PA says it’s the highest it’s been since November)
Plt – 242, up from 221

So my meds are all staying the same, and since I’m very close to six months post transplant, I need to have another bone marrow biopsy and aspiration done (woo hoo). It is scheduled for next Friday.

I asked Dr. T if he considered my GvHD to be at Level 1 and he said he did. I asked him if I would know if the GvHD in my liver got worse and he said that normally I would not know unless it got much worse. This is part of the reason I was glad to see my liver enzyme levels were no worse than 2 weeks ago. I asked him if the reason he wanted to see some GvHD was because if meant there was a much smaller chance of relapse of the disease (essentially leukemia) and he said that was the reason. He said the odds of cure are much better if there is some GvHD because it means my new immune system was indeed doing what it is designed to do and that is to attack anything which is not it. In addition to fighting its new host, it is probably also killing off any remaining diseased bone marrow, which he says can definitely hang around in quantities too small to detect in the blood or in the marrow. So once again, it will be good to get those chimerism studies back a couple of weeks after the biopsy/aspiration and still see 100% donated bone marrow.

So I’m feeling pretty good about my current status. I’m feeling OK, I’ve got some GvHD, and it doesn’t seem to be getting worse. Now if I could just hurry things along some.

Love,
Justin

Day 168

2005-02-04T23:59:00.000-05:00

After two weeks of being down to one Prograf (anti-rejection) pill per day, I was feeling pretty good because I still had almost no increase in any GvHD symptoms. Then I went to the clinic yesterday and found out that I have probably been overoptimistic (more below). My blood counts were not bad:

WBC – 3.2 (without Neupogen), down again from 3.7 two weeks ago and 3.9 three weeks ago, but not terrible
Hgb – 10.2, up from 10.0 two weeks ago and still below normal (14)
Plt – 221, up from 195 two weeks ago and satisfactory even if a bit below normal

The PA (physician’s assistant) said I looked good and things seemed great. The doctor (Dr. T) said that things were good and there were indications in my blood that my liver is being stressed. He also said that he is glad to see the liver indicating a higher level of GvHD because he would still like to see more. Liver stress or damageis detected primarily by looking at the levels of 2 liver enzymes in the blood called aspartate aminotransferase (AST or SGOT) and alanine aminotransferase (ALT or SGPT) More information on liver blood tests . Dr. T said that normal levels are in the 40 – 50 (units per liter of serum), and today, mine were at about 65 and 115 (my memory is not precise about the numbers he quoted). He quickly added that the levels can get up into the thousands, so there’s no cause for great concern right now. However, potential liver damage is serious enough that I am being put back on Cellcept (I was taking it through sometime in November) which is another anti-rejection drug, but one that is more effective with liver reactions than my Prograf is. I am also staying at my current level of 1 pill a day of Prograf and adding Protonix back in for preventing heartburn because the Cellcept can be hard on the digestive tract.

I asked Dr. T about what my odds were now compared to the 50 to 60 percent chance of cure that he quoted to me pre-transplant. He said he wouldn’t change those odds yet because he still wants to see more GvHD, and that if I got some level 2 reactions in the next 6 to 12 months, he would increase the odds to 80 or 90 percent because of a higher level of confidence that my original disease would not make a comeback. After a year or two of being disease-free, the odds would increase even more. I tried to call the doctor on the phone today (without success) to ask him about whether and how level 2 GvHD involving the liver would be manifested for me. Right now, I can’t tell my liver is having trouble; it’s distress is only detectable by the blood tests. I’ll try to remember to call him again next week.

Adding Cellcept back into my drug regimen means that I am also going to become a bit more immune compromised again after becoming less so for a while. This is the reason for my feeling of disappointment. I allowed myself to think and hope I might be very close to a more normal life because if I just had my Prograf reduced once more to 0 pills a day, I would soon be no longer immune compromised. Now it seems clear that I’ve probably got months to go. When this all started, the doctor said to expect to be out of circulation and unable to work for a year. I knew it could be more and could be less and I thought it was starting to look like it might be more like 6 months for me (which would be in about 2 weeks), but now I can see that a year is likely and more than a year is possible.

I’m thinking I was also probably overoptimistic before when I said earlier that it was hard for me to imagine that my disease could relapse now. Although I’m not going to imagine that it will, seeing that it seems to be Dr. T’s greatest concern has modified my view. I will also hasten to point out that the disappointment, while real, is relatively minor. It is easy for me to realize and be grateful that I’m feeling as well as I am and that if it takes another 6 months or 12 months of being immune suppressed and I am eventually cured, it’s a great deal. Right now, I’m feeling well enough that I’ve been working in the range of 30 hours per week. I can do another 6 or 12 months of this – I could do more if necessary.

Some other good developments are that with the decrease in Prograf, my kidneys may be functioning better, possibly leading to an improvement in my hemoglobin levels, as well as reducing my creatinine levels. Lower creatinine levels mean I don’t need as much hydration which led the doctor to take me off the twice weekly saline infusions. This is nice because each infusion required me to carry around the saline (with magnesium) and pump for 4 hours. This also means that I will no longer be having a nurse visit me at home once a week, at least for now. Further, if my creatinine levels stay down, they will probably have my catheter removed, which means I would at least be able to shower normally without having to worry about getting the catheter site wet. Catheter removal will be evaluated at my next clinic appointment in two weeks.

Well, this is getting a bit lengthy, so I will bring it to a close. The summary is that I am still doing well, but suddenly had to make a shift in my expectations from thinking I might be very nearly out of the woods to realizing that I’m only half way through the woods at best. Having to make this shift came with some disappointment for my wife as well as for me, but not enough to lead to total discouragement. Thank you for hanging in there with us. It’s good to know we still have a team of people cheering and praying for us.

GO EAGLES!

Love,
Justin

Day 155

2005-01-22T22:00:00.000-05:00

This last week was really pretty good for me. I had no further evidence of any GvHD and have not gotten at all sick. I saw my regular doctor (Dr. T) on Thursday after not having seen him for 3 weeks. He said I’m doing extremely well and my blood counts were good. My WBC held up at 3.7 which is down a little from last week’s 3.9 and still a little below normal, but I had also been without Neupogen for 2 weeks. Also, my hemoglobin was up a bit.

WBC – 3.7, down from 3.9 last week and still a bit below normal of about 4
Hgb – 10.0, up from 9.4 last week and still below the normal of about 14
Plt – 195, down from 216 last week and while below normal, still it is at a good level

Dr. T did have an explanation for my anemia (low hemoglobin), which the doctor I saw last week did not have. The explanation was that the kidneys produce something like the drug Procrit which encourages the production of hemoglobin. My kidneys have been struggling a bit all along, and when the kidneys are stressed like that, they don’t do as well at producing the Procrit-like chemical. I was glad to get an explanation that made sense. When I am off the drugs that cause my kidneys distress, my hemoglobin should be fine.

Dr. T also decided to cut back my anti-rejection drug (Prograf) again from 2 pills a day to 1. So after being cut by 1/3 a few weeks ago, it has now been cut again by 1/2. It seems like a significant cutback, but the earlier cutback having few negative consequences can give one cause for hope that this cutback will not be bad either. And maybe the next cutback to no Prograf will also be OK and I will be that much closer to a more normal life. In the last 2 days since the last cutback, I have again only noticed slight symptoms (like tingling hands) which may not even be related.

My next clinic appointment is scheduled for 2 weeks (Feb. 3). I intend to ask the doctor whether cutting back on the Prograf makes me less immune compromised and whether cutting it out altogether will mean I will no longer be immune compromised. I may also ask him about his guess on the percentage chance of cure now. He said before the transplant that he figured I had a 50 – 60 percent chance of being cured. It must be higher than that now, but I wonder how much higher.

Today, we’ve gotten ten inches of snow (so far) and I did some shoveling but I don’t last very long before I get winded and cold. It is still good exercise and I’m not in a huge rush to get it moved. We’re supposed to get high winds tonight and tomorrow, so it may not pay to shovel until the snow has stopped blowing around anyway.

Love,
Justin

Day 147

2005-01-14T15:10:00.000-05:00

Things have been pretty uneventful (health wise) over the last 2 weeks. This was a period where some reaction to the anti-rejection drug (Prograf) being cut back would not have been at all surprising, and in fact, maybe could be expected. I did notice some small things that might have been due to the weaning, such as a tingling sensation in my hands on a couple of days and some intestinal cramping, although I’ve been getting the cramping periodically for quite some time now. Interestingly, the tingling hands seemed to be followed by periods of being able to accurately gauge the temperature of water with my hands. Ever since my transplant, I’ve been unable to tell with my hands whether water was just warm or really hot until the last couple of weeks. Maybe the tingling was the return of some functionality to the nerves in my hands.

At my clinic appointment yesterday, they said my blood counts were good except that my hemoglobin went down again to 9.5.

WBC – 3.9 (same as last week and close enough to the normal of 4.0 to be good)
Plt – 216 (down from 230 last week but at a good level)
Hgb – 9.5 (down from 10.0 last week and 10.5 the week before)

The hemoglobin should be up around 14 or 15 and below 10 is considered anemic and I would get a transfusion if it gets below about 8. While I thought the anemia was from medications, the doctor and physician’s assistance said they really have no good explanation for it. They said if the donor is not a full match or is not an ABO match, they often see some anemia, but not usually with a full antigen match and ABO match like I had with my sister. They said they would give me some Procrit to boost the production of red blood cells, but I said that if I am given a choice, I would decline medication. I am definitely getting winded more easily these days, but it is not really disrupting my life.

They told me to try skipping the Neupogen (which boosts white blood cell production) this week to see if my WBC holds up. I asked them when they would normally cut back on the Prograf again and the doctor (not my regular doctor who is in India for a couple of weeks) said they could try cutting it back this week. When I said that I wasn’t actually requesting that, but just wondered what a normal routine would be, he decided that we should keep it where it is and let my regular doctor decide next week because he has more experience anyway. Because of that and because they want to keep an eye on my hemoglobin, I’m going back for another clinic visit next week instead of skipping a week as they were hoping I could.

I’m working a bit more these days with 2 or 3 days a week in the office and working from home on other days. I still have to avoid crowds, refrain from hugging people and shaking hands, avoid raw fruits and vegetables, etc. I wash my hands frequently with antiseptic soaps and so far have been successful in not getting seriously ill. The restrictions can feel hard sometimes, but it’s a lot better than contracting some serious infection. And although I still don’t know how long this will go on, I’m hanging in and expecting to beat this disease.

Love,
Justin

Day 132

2004-12-30T21:37:00.000-05:00

At my clinic appointment today, the blood counts were not significantly changed. My hemoglobin was down a bit, but since I am not excessively fatigued, they are still willing to forgo meds that would bump it up.

WBC – 3.9 (down from 4.8 but still at a good level)
Plt – 230 (up from 200 and at a good level)
Hgb – 10.0 (down from 10.5 and not at a good level, but not alarmingly low)

Most significantly, my doctor did decide to reduce the anti-rejection drug (Prograf or tacrolimus) from 3 a day to 2 a day. Yes, he is going to be gone until 1/17/05 (back home to southern India, but not the coast, so his family was safe from the tsunami) and he told me to come back in two weeks instead of the usual one. I asked him if that meant he didn’t expect a reaction to the decrease in the medication right away and he said no, it didn’t mean that, and if I started to notice increasing signs of GvHD, I should call in and get seen sooner than two weeks. I’m glad to get started on the weaning process and feel good that the doctor is willing to start it when he won’t even be around for a couple of weeks.

I am going in to the office where I work a few days a week now and it seems to be working well. My hair is growing slowly and seems to be curlier than before. It may also be grayer, but it may also be that the gray hair is growing faster than the darker hair.

Since I don’t have another clinic visit scheduled until 1/13/05, if I continue to cruise along without significant change, I may not write here until after that appointment. However, if I have something to report before then, I will.

I find myself thinking about the people affected by the earthquake/tsunami in southern Asia and feeling very sad for the destruction of people’s lives and property there. Once again, it can be a reminder that while I know I am not any more blessed by God than any other person, I do have much to be grateful for. There is much that we all take for granted and it is good to remember that we do so and try to be mindful of some of the those good things we take for granted most of the time.

Have a good new year.

Love,
Justin

Day 126

2004-12-24T16:47:00.000-05:00

At my clinic appointment yesterday, my blood counts were pretty much the same as last week, which is to say pretty good. My white blood count and platelet count are both good. My hemoglobin remains on the low side (the doctor would like to see it up around 12 or 13), but since I am not experiencing excessive fatigue, he is deciding not to give me Procrit or some equivalent. The doctor is disinclined to give another shot unless it’s really needed, and that’s fine with me.

WBC – 4.8
Plt – 200
Hgb – 10.5

I’ve still got remnants of a cold. It started out with a sore throat and now is just some head congestion. It’s not terrible, but I think it is making me feel kind of lousy all over. Most mornings I wake up with a slight headache that usually recedes during the day.

The doctor says I look really good and am doing very well, with few signs of GvHD. He therefore said that he might start weaning me off of my anti-rejection drug next week, even though he won’t be around for the next 2 weeks. That may mean that he wouldn’t expect to see an increase in GvHD right away, but I didn’t query him about that because I didn’t wonder about it until later. Although a part of me is a little nervous about how the GvHD will manifest and how severe it will be, the bigger part of me is anxious to move on and get off the drugs so my life can get back closer to normal.

Some of you might be interested that I got a bill from the hospital a few days ago. Take a guess how much was billed for just the hospital stay of about 3 weeks before you read on ……………………………………………………………………………………………………………………………………………………… Well, it may be considered by some to be tacky to talk plainly about money and finances, so I will just say that 3 such hospital stays in the BMT unit would approach $1 million. It’s a good thing we have health insurance that covered half of it. I’m just kidding – actually our health insurance covers virtually all of it. It also seems a little strange to me that staying in a hospital essentially costs me nothing, but when I come home, dramatically reducing the cost to the insurance company, it starts getting more expensive to me. I have copays for all the prescription medications I get and for all the visits to the doctor. That gives me a financial incentive to stay in the hospital as long as possible. For all the non-financial reasons, however, there’s no way I’d want to extend the hospital stay at all.

It’s Christmas Eve, and in visiting with friends and family over the holiday season, I find I have a special appreciation for the opportunities to be with people I love. As hard as my health situation has seemed over the last six months, I have friends who have terminal cancer, and one who was recently diagnosed with ALS. I realize that among the many things I have to be thankful for, one of them is that my situation holds the possibility and hope that I can be cured. I am also acutely aware that I’m not in charge – none of us is. Our lives and situations don’t go strictly according to our plans except for the brief instances when our plans happen to match the Lord’s plans.

Have a great Christmas and know that your love and support have made a huge difference in my life.

Love,
Justin

P.S. If Eric or Gail Masson reads this, please know that you’ve been in my thoughts and prayers, and I find myself wondering how he is doing. I know others that read this blog wonder also. We’d love an update.

Day 119

2004-12-17T22:20:00.000-05:00

At my weekly clinic appointment yesterday, my blood counts were good.

WBC – 4.7 (up from 3.7 and in the normal range)
Plt – 190 (down from 198, but still in the normal range)
Hgb – 10.8 (up from 10.7, and still a little below the normal range of 11 – 18)
ANC – 3.6 (up from 2.7 3 weeks ago and well into the normal range)

I had some minor health issues this past week, including some intestinal cramps, a mild sore throat, and a couple of restless nights, but nothing serious. I’m still taking Neupogen once a week to keep the WBC up and although the doctor had said last week that he hoped we could skip the appointment next week, he decided that I should come in, mainly to keep an eye on my creatinine levels, which are a bit high but not dangerously so. I think I previously referred to this as creatine levels, but I now think that creatine is a supplement one takes to enhance anaerobic performance. Creatinine is a byproduct of creatine, but is also what they measure in the blood to see how the kidneys are doing.

Not much else that’s new.

Love,
Justin

Day 111

2004-12-09T21:51:00.000-05:00

I had another clinic visit today and there wasn’t much change. My blood counts were as follows:

WBC – 3.7
Hgb – 10.7
Plt – 198

They were pretty happy with my WBC and it looks like I’ll be taking Neupogen once a week to keep it boosted. The platelet count is fine and the hemoglobin is a little low, but since my energy level seems to be pretty good, the doctor said he wasn’t going to try Procrit to boost yet as he was considering. When I got home, the clinic called and said I needed to come back in tomorrow to get a shot of some other hemoglobin booster, but when they remembered that I had the Neupogen at home already, they decided I didn’t need to come in after all.

I got some topical ointment for the GvHD on my face and I discovered it contains tacrolimus, which is the same drug as my immune suppressant that I take every day. Of course, when I picked up the prescription, my co-pay turned out to be $35! Ouch. Apparently tacrolimus is very expensive and for health insurers, falls into that third tier (above the name-brand tier).

I asked the doctor about the timing of weaning me off the immune suppressant or anti-rejection drug (called tacrolimus or the brand name of Prograf), partly because part of me feels like getting on with things so I can get back to a more normal life. I asked if he was waiting until he saw something in my blood labs or something. He said no, he was just waiting because he and others around the country who do bone marrow transplants have found that if you rush things, the GvHD can be really nasty. They’re still learning how different mini-transplants are from the older full transplants where the GvHD seemed to kick in much quicker. If it means less severe GvHD, I’m willing to wait. As a result, I’m not expecting much to change between now and mid January, which is when he says he is thinking about starting the weaning process.

On the positive side, I did eat some pizza from a restaurant last weekend! I know it doesn’t sound exciting, but it was a real treat for me (Shrimp Bella Venezia).

I’m also working from home (software development) more these days, and it feels good.

On the more negative side, I’m really noticing what they call “chemo brain” wherein my brain really doesn’t seem to work as well (don’t tell the people at work). The number of things (like names) that I forget these days is astounding. There are other symptoms which can be quite discouraging at times, but they tell me it’s not a permanent condition. I sure hope that’s true.

Love,
Justin

Day 105

2004-12-03T23:59:00.000-05:00

Well, I’ve passed day 100 and I’m still here. I’m not sure about the significance of 100 days, except that it seems to be where the transplant team separates acute GvHD from chronic GvHD. I think it’s a bit more than that, but I’m not clear on what the “more” is. I went in for my weekly clinic visit yesterday and it was not too eventful. My blood counts were pretty good. My WBC was 2.7 after almost 2 weeks with no Neupogen, so it was good that it was well above the 1.3 it had gone down to a few weeks ago. However, it is still a bit below normal, so the doctor had me give myself another shot of Neupogen when I got home yesterday. He will see where my WBC is then and may have me take a weekly shot for a while.

WBC – 2.7
Hgb – 10.5
Plt – 220

My platelet count is good and my hemoglobin is a little low but good enough. The doctor thinks the slightly low counts could be a form of GvHD. While my intestinal problems still seem to be better and the skin rash on my torso is definitely less than it was, there is clear evidence of GvHD on my face, which while not bad, is manifested by a darkness and dryness on my forehead, cheeks, and ears, accompanied by a slight itching. I was prescribed a topical ointment for it and still have not started in with the Prednisone. They also said I could stop the IV magnesium and saline, which is nice because it takes about 4 hours each time.

The doctor has also not started decreasing my immune suppressant drug yet, because he thinks that at this point, it might allow some more severe GvHD than he would like to see. With the newer mini-transplants like I got, he thinks the weaning has to be delayed more than with the older fully ablative transplants from which GvHD seems to get more of a head start.

The doctor also said I could try some food not cooked at home, but I should be careful that it is heated well enough to kill any germs or other infections. He said that I could have a pizza, for instance, if it didn’t have vegetables that weren’t well cooked. It’s kind of exciting although I haven’t done it yet. Maybe this weekend.

My wife and I have also started attending a bi-weekly support group for BMT couples. We’ve been to 2 meeting so far and it has been very nice. I’m the most junior BMT patient by quite a bit – the others are more like 2 - 4 years post transplant.

I’m still feeling pretty good, doing some yard work and some work work (from home). I hope it lasts.

Love,
Justin

Day 97

2004-11-25T11:52:00.000-05:00

My clinic appointment is normally on Thursday (today), but since that is Thanksgiving this week, I went in yesterday. My blood counts were good, with the WBC going down to 3.7, but still in a good range. I took Neupogen just once last week (down from 2 and 3 times per week), and the doctor said to try cutting it out altogether this week. Also, my absolute neutrophil count was at 2.8, which is very good.

WBC – 3.7
Plt – 204
Hgb – 11.3
ANC – 2.8

In my previous blog entry, I noted that since some of my GvHD symptoms had subsided, I decided (with the doctor) to not start taking the Prednisone he had prescribed. Well, I continued to feel better all week, so I never started the Prednisone, and yesterday, the doctor said that it was probably a good decision. I believe that steroids like Prednisone, if taken over long periods, have significant unintended negative effects, so not starting it until really needed is good. I do still have a mild skin rash accompanied by mild itching, but it is quite bearable for now.

The PA asked me how I was doing psychically/emotionally. I told her that I was doing OK, but that I was feeling more how long a haul it is. This home confinement has been going on for 3 months now and I have some unknown number of months left. It’s not terrible, but I feel a little like the convict who is sentenced to home confinement, except that I don’t have the ankle bracelet. I told the PA that I am increasingly missing some of the foods that are restricted for me. She asked for an example, so I said I would love to have a hoagie for instance. She said that maybe in another week or two, I could treat myself to one, but it still can’t become a regular thing in my diet. I also miss salads and fresh fruits.

This being Thanksgiving Day, there are two things that are prominent in my mind for which I am especially thankful. I thank the Lord for life itself and for so many family and friends whom I love and who love and support me in return.

Love,
Justin

Day 91

2004-11-19T16:53:00.000-05:00

Today, it has been 13 weeks since my transplant, and tomorrow will be the 3 month milestone. At my clinic appointment yesterday, my blood counts were pretty good. Most importantly, my WBC is still up; and while my Plt and Hgb were down slightly, they are in a good range and often a medication to boost one cell line (like Neupogen) will depress the others slightly. We are cutting back the Neupogen to once this week and if the WBC is still acceptable, we will stop it next week. The doctor thinks that maybe the marrow just needed a little kick start to get the white blood cell production back on track.

WBC – 6.1
Plt – 160
Hgb – 11.2

The doctor said that around three months is when they typically start to see GvHD in patients who have had the mini-transplant as I did. I have slightly increasing signs of it in a more pronounced skin rash with a bit of itching, plus intestinal cramps which I’ve had off and on for over a week. He referred to the GvHD level as being “trivial” so far, which I take to mean not up to level 1 yet. He did prescribe Prednisone (a steroid) for both of those conditions, but since they both seemed a bit subsided today, he said I could put off starting the medication. While I basically do what the professionals tell me, I have a prejudice of not taking medication unless needed, and I have the sense that steroids are not only effective, but also can have significant unintended effects.

The doctor also said that for someone my age, the odds of developing GvHD that could be considered Level 1 or higher is in the 80-90% range. Again, they have no idea what it would present like or how severe it would be. I also asked him if getting acute GvHD (in the first 100 days) makes the odds of getting chronic GvHD (after 100 days) more or less likely, and he said no.

Meanwhile, my energy level is pretty good, I’m sleeping OK, and my hair is still growing in. I also still appreciate your thoughts and prayers and look forward to getting back into circulation, although that is still months away.

Love,
Justin

Day 83

2004-11-11T23:47:00.000-05:00

Today was another weekly clinic visit and the good news is that my counts were up, especially my white blood count (which is now in the normal range again).

WBC – 6.5
Hgb – 12.7
Plt – 197

The doctor still doesn’t know why my WBC plummeted like it did and we can’t be sure whether the Neupogen I’ve been taking is the only reason it went back up like it did or whether it would have gone up some anyway. I took the Neupogen 3 times last week and this week, he is cutting it back to twice. If the WBC stays high enough, he will cut back even more next week and hope soon to get me off it completely.

I’ve had some bone and joint pain plus a bit more tiredness, both of which are probably due to the Neupogen. I’ve also had a bit of an upset stomach, which could be some GvHD, or could be due to the Neupogen as well.

Now that I’m getting close to 3 months post transplant (which will be next Friday), the doctor is expecting more GvHD. He explained that with the old fully ablative transplants that they used to do, they saw a lot more GvHD within the first 3 months because the more intensive chemotherapy did more damage to many organs which left pieces of those organs all through the body and blood. This meant the antibodies from the new immune system could find and attack those pieces more easily, and when they were done with the pieces, the antibodies were all worked up and they then attacked the organs themselves. This, of course, is my translation of what the doctor said, but it gives the general idea. With the mini transplant like I got, the chemotherapy is less intense and does less damage to the organs, so the antibodies take longer to mobilize and attack the more healthy organs. This means that more often with the mini transplant, the GvHD comes after 3 months post transplant.

The doctor also said that I am a high risk patient in part because the stem cells used came from a female donor (which doesn’t at all imply that I am anything but totally grateful to my wonderful sister for donating the stem cells). Because of the relatively high risk, he may taper off my anti-rejection drug a bit more slowly over the next several months. He has to try to balance the need to get me off the drugs with the danger that doing so too quickly could cause severe, even fatal GvHD reactions.

In the meantime, I’m hanging in and doing OK.

Love,
Justin

Day 76

2004-11-04T19:15:00.000-05:00

I went in to the clinic on Monday just to get blood drawn, some of which was being sent out to be tested for antibodies. My counts then were:

WBC – 1.3
Hgb – 12.2
Plt – 203
ANC – 0.2

Since my white blood count was so low, I got another shot of Neupogen to stimulate production of white blood cells. I went in again today for my weekly visit and the counts were:

WBC – 1.3
Hgb – 11.6
Plt – 187
ANC – 0.3

I got another shot of Neupogen plus two syringes for me to administer myself on Sunday and Tuesday. The white blood count and absolute neutrophil count are still a bit of a concern, but the results of the antibody test are not in yet. The doctor said that even if the antibody test came back positive, he’s not sure what he would do, if anything. His inclination still seems to be to wait it out and hope my systems work themselves out and the white blood count goes back up. He also said boosting one blood cell line (like with Neupogen for white blood cells) can somewhat depress the other lines and that may be why my platelets and hemoglobin are down a bit.

I got a little better explanation of how the WBC problem could be a form of GvHD. I was confused because the graft is producing the white blood cells, so I didn’t think it would also attack them. The doctor explained that there are T-cells that tell B-cells (T-cells and B-cells are a big part of the immune system and are a kind of white blood cell called lymphocytes) what to do and sometimes the T-cells are suppressed for various reasons (including medication) and it allows the B-cells to go a bit wild and sometimes they attack things they shouldn’t. I’ve done enough studying of lymphocytes which are one of five types of white blood cells to start to get an appreciation of how terribly interesting they are. It also increases my appreciation for what a complex system the human body is.

So, I guess I’m technically neutropenic again, although I still feel quite good. I still have a good appetite and decent amount of energy. I guess being neutropenic also means I should be extra careful to avoid crowds and sick people, wash my hands frequently, and try to avoid potential food problems.

My hair is definitely starting to grow back. I have a real mustache and am most of the way to having a full beard which seems to be coming in quite well, although it seems to be more “salt” than “pepper” these days. The hair on the top of my head is behind my facial hair in making a comeback, but it has definitely started growing again.

The current problems also remind me once again that while I feel pretty good, I still have a long way to go, and we don’t know what that path holds in store.

Love,
Justin

Day 69

2004-10-28T13:05:00.000-04:00

I just got back from my weekly clinic appointment and the news was basically good. The chimerism studies of both my blood and bone marrow still show 100% donated marrow with no other evidence of MDS or AML such as excess blasts or misshapen cells. The only abnormality is that in the bones, they would like to see 50% marrow, which I believe is normal, and mine is 30 – 40%. The doctor said this is not terribly unusual and is probably not the cause of my low WBC.

My blood counts for today were:
WBC – 1.4 (down again from 1.8 last Friday)
Hgb – 11.2 (holding steady)
Plt – 198 (also holding steady)

Also, I asked about my ANC (absolute neutrophil count) and was told that last week it was .8 which means I am not neutropenic (which is below .5).

There is still concern about what is happening to my white blood cells. The doctor says that they have a list of possible causes that they go through to try to determine what the problem is.
First they look at the possibility of MDS or leukemia relapse and in my case they are ruling that out for now because of the bone marrow biopsy and aspiration results
Next, they look at drugs that could cause the problem, and the only adjustment they made in my medications was to take me off my broad spectrum antibiotic and put me on penicillin plus another old antibiotic that they apparently used to use for leprosy
The third possibility is that my body (probably the lymph system) is producing antibodies that are targeting the white blood cells specifically. The body can produce antibodies against any organ or body part (an autoimmune disease) such as with arthritis where antibodies attack joints. The doctor thinks this is strongest possibility for the cause of my low WBC and I’m going back to the clinic on Monday to have blood drawn and sent out to test for antibodies (they only test on Mondays). This test would only be conclusive if positive; a negative result would not mean that antibodies are not the problem.

I’m starting to get more appreciation for how different every patient and every bone marrow transplant is for these doctors. This is why they can’t begin to predict how things will go. My marrow or blood seems to be having some problems, but I could never tell by how I feel because I haven’t felt better since the transplant than I do now. My appetite is good, I’m sleeping OK, my energy level is as good as it’s been (although I can’t sustain most activities for long), I have no nausea or diarrhea, no pain anywhere, no fever for weeks, etc. My cold even seems to have gone away.

So here are a few of the things for which I am currently grateful (not in a particular order):
I’m feeling relatively well
My current problems don’t seem to be really serious
Competent medical care.
My wife who takes such good care of me and suffers through the ups and downs of the process with me
Friends and strangers who support me and pray for me and my family

I’ll write again when I know anything more.

Love,
Justin

P.S. I believe today is the day that Eric in South Africa (who commented here a few times) was scheduled for his bone marrow biopsy. Please join me in praying for him and his family.

Day 63

2004-10-22T23:28:00.000-04:00

I went back to the clinic today and my blood tests showed my white blood count is down again.

WBC – 1.8
Hgb – 11.3
Plt – 196

So the WBC went from 5.2 last Thursday to 1.8 today. While they said the platelet count going up a bit was a good sign, the WBC drop concerned them enough to want to do another bone marrow biopsy which they did today. I won’t get the results until next week. In the meantime, they cut the dosage of my immuno-suppressant from 3 a day to 2. When the PA told me to reduce the dosage, she also warned me to call in immediately if I got diarrhea or my skin rash became worse. It seems they want to give my new immune system more of a chance to do the kind of fighting it is supposed to do, and I think this may be because of a fear of relapse of my MDS. When I asked about this directly, the response was that they thought it very unlikely at this point because of the last chimerism study a few weeks ago showing 100% new bone marrow and because I’m showing signs of GvHD.

My creatine levels were down from Wednesday, meaning my kidneys are doing better, even though the only difference since then is that I was given IV fluids.

My blood counts may be doing strange things, but I wouldn’t know it without the blood tests because I still feel pretty good overall. I take this as a good sign, even if it’s from naiveté. I’m still not stressing much about the changes and still feel like whatever comes up, we’ll deal with it and get past it. The medical professionals I see seem to take the same attitude and I find that quite helpful.

Once again, I will write when I know something more.

Love,
Justin

Day 62

2004-10-21T21:58:00.000-04:00

I had my clinic visit on Wednesday this week because my doctor is out of town later in the week. There were several interesting findings on this visit. First, my kidneys (not my liver like I indicated before) continue to show signs of distress I believe through elevated levels of creatine in my blood. This is enough of a concern to the doctor that while I was there, they infused 2 liters of fluid (4 hours worth).

We noticed a slight rash on my torso and they seem to think it is indicative of graft vs. host disease (GvHD). In addition, my blood counts were down a bit:

WBC – 2.8 (down from 5.2)
Hgb – 11.2 (down from 11.4)
Plt – 187 (down from 233)

The WBC could drop because of GvHD and the hemoglobin is down only slightly (and they gave me another shot of Procrit), but I don’t remember an explanation of why the platelet count might be down. All of this together led them to set up another appointment for tomorrow (Friday) for more blood tests, including a chimerism study of the circulating blood (which would show percentage of blood from new bone marrow versus old bone marrow). Depending on the results of some of these tests, they may decide to do another bone marrow biopsy tomorrow also.

I guess these changes might not be unusual or unexpected, but the more I think about it (and as I write about it), the more I wonder if they might be indicative of a problem. I guess we’ll know more soon, and in the meantime, I’m going to try not to worry about it, because the worrying doesn’t actually do any good. The other thing is that I still feel pretty good overall, and for that I am grateful.

I walked a little over a mile today because my feet feel a bit better and I feel like I need the exercise. So far, my feet are still not complaining about it.

I will write again as soon as I know anything more. Again, prayers and other good thoughts are appreciated and do help.

Love,
Justin

Day 57

2004-10-16T19:53:00.000-04:00

Today is Day 57 which means it’s been 9 days since I last posted. Sorry about the delay. My cold is mostly gone, I just cough occasionally.

I had my weekly clinic appointment on Thursday and there were only a few changes. My hemoglobin was up to 11.4 which may be due partly to the reduction in my immuno-suppressant drug and partly to the shot of Procrit I got the week before. This time, they said to stop taking the blood pressure medicine I was on and reduced my immuno-suppressant again from 4 to 3 (contrary to what I said last week, my dosage was decreased from 5 to 4 at that time not 6 to 5). I believe this is partly due to the fact that my liver (correction - I should have said kidneys) is still indicating some distress and partly that the plan is to reduce that drug over time anyway.

WBC – 5.2
Hgb – 11.4
Plt – 233

My appetite has improved to where I get hungry sometimes, and my sleep has definitely improved, although I still don’t come close to sleeping through the night. I now usually wake up only 2 or 3 times per night and then go right back to sleep.

Exercise has become a bit difficult because of my two current areas of pain. Hemorrhoids aggravated by intense coughing fits have become quite uncomfortable and make bike riding problematic. And I have a strange problem with the soles of my feet that makes extended walks almost unthinkable. The soles of both of my feet often have a burning sensation that makes them quite sensitive and makes it hard to walk even short distances. This has been going on for 3 or 4 days straight, although it seems a bit better today than before. The doctor’s best guess is that one of the drugs I am taking is affecting nerve endings in my extremities. The problem may have been triggered by walking for a half hour two days in a row, possible overstimulating the nerves in my feet. This may also be why my hands are so poor at gauging temperature (like my skin often feels very hot when it is not and I can’t tell when water is hot or just warm).

So many things in my body are so different from what they were pre-transplant that it seems like nothing really surprises me any more. I can’t figure them all out, but I am generally able to accept them fairly easily. I hope this continues to be true even if the changes become more severe with GvHD.

As always, thank you all for your continued support.

Love,
Justin

Day 48

2004-10-07T21:39:00.000-04:00

Today is Day 48. The cough I developed late last week developed into a full blown cold with coughing, stuffy nose and head, sore throat, and some loss of appetite. Saturday, Sunday, and Monday were pretty miserable for me and I felt really wiped out. I still have the cough, but have felt quite a bit better the last few days.

I was at the clinic today, and they said things haven’t changed much except that my hemoglobin is down a bit again (10.8) and they’re pretty sure it is because my liver is struggling a bit and not producing enough of a hormone that stimulates the marrow to produce hemoglobin. My liver is probably struggling a bit because my body is not absorbing enough fluids. My body is probably not absorbing enough fluids because of my immuno-suppressant drug. As a result, they did 2 things. One is to reduce that drug from 6 pills a day to 5, and the other is they gave me a shot that is supposed to encourage the production of hemoglobin.

WBC – 4.0
Hgb – 10.8
Plt – 225

They also said not to be surprised if my cold hangs on longer than usual (it could be weeks) because of my condition. My reaction (not verbalized) was that I’m actually not even used to having colds, let alone how long they last.

My wife and son with whom I live are supposed to get flu shots because I am high risk. That may be a little tricky with the recent news that about half the normal supply for the U.S. will not be available this year.

Like I said, besides the coughing fits, the last few days I have felt pretty good. I continue to walk and I’m steadily increasing the distance and speed. I’m pretty sure there are no marathons in my future, but I do look forward to getting back to tennis, basketball, and bicycling. I also feel like my appetite is improving – I actually start to get hungry sometimes. Of course my weight loss has also slowed and probably even stopped for a while.

Love,
Justin

Day 42

2004-10-01T15:28:00.000-04:00

Today is day 42 (6 weeks!). I went for my weekly clinic visit yesterday and learned a few interesting things. First of all, I asked what it was that was keeping me from being able to drive and when might I expect to be able to drive. The response was that I could drive now because my platelet count is up. Well, that’s been true for several weeks and they didn’t volunteer that I could drive. I guess sometimes you just have to ask.

The doctor said that while he sees some signs that I might be developing some GvHD, he expects more. He said that they have 4 levels of GvHD and that levels 3 and 4 are pretty severe and they don’t want to see that, but that some level 1 or 2 would actually be good, partly because patients who get some GvHD seem to be less likely to relapse. I asked him if there is still a chance of relapse for me since there was no evidence of host marrow or blasts therefrom and he said there is because there could be some cells hiding and undetected by the bone marrow sample taken. My sister, who took me to the clinic asked if the GvHD evidence he has seen in me was level 1, and he said he would not even consider it level 1. So I guess I really do have some rougher spots to look forward to although no one knows when or what form or how severe it will be. But it’s OK, I know I have the support I need to get through.

They said my liver was having some problems because I’m not hydrated enough. I’ve been trying hard to drink a lot, but they said that because of the immune suppressant drug I’m taking, sometimes the body just can’t absorb enough fluid, so they gave me a liter of IV fluids.

Yesterday, I also developed a cough that continues today. There’s no fever and no sore throat or anything, so when I called and told them about it, they said to try to ride it out and let them know if I got sicker. Why do these things always seem to crop up on Friday when they won’t be around for the weekend? If I get worse on the weekend, I may have to go back into the hospital instead of the clinic. I sure hope that doesn’t happen.

Love,
Justin

Day 38

2004-09-27T23:59:00.000-04:00

Today is Monday, Day 38 and I’ve had 3 relatively good days in a row. Not only that, but I’ve been able to get in walks outside for about 15 minutes on each of those days.

If things continue to go as they have where there isn’t much to report for each day, I may spread out these updates even more. In other words, you can assume that no news is good news. However, please don’t forget about me because I feel like I really need your prayers and positive thoughts. I don’t take them for granted and I express gratitude to my God every day.

Hoping the good days continue while knowing that some won’t feel so good,
Justin

Day 35

2004-09-24T16:17:00.000-04:00

Wednesday, Day 33 was one my best days in quite a while; I had a bit more energy all day.

Thursday, Day 34 started out well, I was in at the clinic for a couple of hours in the afternoon which kind of wore me out, and was pretty tired by evening. My blood counts were down a little, but they say the counts never just go steadily in one direction, and the counts are still looking good. It appears my weight loss is slowing as I only lost 2 pounds during the week instead of 5 or more. The doctor is OK with it, but the PA is concerned and wants me to keep track of what I eat. The doctor also said that the loss of appetite could be a mild form of graft vs. host disease (GVHD).
WBC – 5.3
Hgb – 11.3
Plt – 227

Today, Day 35 is back to a lower energy than Wednesday or Thursday, but still not too bad. I’m starting to wonder if I’m seeing improvement week to week instead of day to day (which I really can’t see).

Well, today is 5 weeks post transplant and I’m still home and doing well.

Love,
Justin

Day 32

2004-09-21T18:39:00.000-04:00

Yesterday, Day 31 (one month anniversary of the actual transplant!), I spent much of the day getting a new Hickman catheter placed. It was supposed to happen at 1:00 PM, and I was supposed to go into the clinic at about 12:30, so I got a ride and left home at shortly after noon. After getting my tests done at the clinic, they said they were running behind at the hospital where the central lines are done so it would be closer to 2:00. (BTW, the hospital and clinic are on the same campus, just a few hundred yards apart.) Well I didn’t actually see the surgeon until about 4:00 PM and didn’t get home until almost 5:30PM. It seemed like a long time to be sitting around waiting for a fairly simple procedure, but I guess it wasn’t much worse than sitting around at home.

I got a glimpse at my blood counts:
WBC – 5.5
Hgb – 12.1
Plt – 272

So they are continuing to look good. Only my hemoglobin is below normal (14), but it continues to rise.

Today, Day 32, I felt extra tired all day and wound up sleeping a good deal into the afternoon. When I sleep (night or day), it’s never for long stretches. At night I’m glad if I get one or two stretches of 2 hours. The rest of the time, I generally only sleep for a half hour or hour at a stretch.

Your tired but feeling good friend,
Justin

Day 30

2004-09-19T21:01:00.000-04:00

I don’t have much to report. Friday was OK, but not great, Saturday was better, and today, Sunday, was even better (most of the day). I’m starting to feel a little worse and more fatigued here in the evening. Maybe I tried to do too much today, even though it wouldn’t seem like a lot if I described it.

Tomorrow, I’m scheduled to get my PICC removed and a new Hickman catheter implanted.

I’ll let you know here if anything big comes up.

Feeling pretty good,
Justin

Day 27

2004-09-16T15:29:00.000-04:00

Tuesday, Day 25, was an extreme fatigue day in which by the end of the day, I felt totally exhausted and therefore kind crummy all over.

Wednesday, Day 26, was a much better day. The thing is, I’m fatigued all the time, but if it’s not extreme and doesn’t get worse during the day, I feel like it’s a good day. The good days are good relative to the not so good days.

Today, Day 27, it’s somewhere between a good day and bad day. This morning, I went for my weekly clinic visit and got some exciting news. As a result of last week’s bone marrow biopsy, we found that 100% of the bone marrow is from donor cells and there is no evidence at all of any host cells or excessive blasts from the host cells. Most people see this around Day 30, and mine showed at Day 21. This doesn’t mean I’m cured, but it does mean that the transplant totally took and wiped out the diseased marrow, and that’s big. We’re all still wondering if and how the GVHD will be manifested.

My blood counts today were also quite good today with my Hgb and Plt both up.
WBC – 4.1
Hgb – 11.8
Plt – 223

I was talking to one of the nurses this morning about my constant fatigue and she said it’s normal. I said that I had to give up on the idea of getting a little stronger every day and she said that was true and that I would feel better rather suddenly. When I asked when that might happen, she said after about 6 months! K

There is a little concern about my rapid weight loss ( 30 – 35 pounds in the last 4 or so weeks), but my doctor is not too concerned because he says he often has to slow patients down on the eating later.

Finally, I’m scheduled to get my PICC replaced by a double lumen Hickman catheter on Monday. The doctor said he doesn’t like to leave a PICC in for more than about 3 weeks because they can get clogged and infected more easily than a Hickman. The double lumen Hickman is just like the one I had in before except that it has two lines instead of three. He says I will need some kind of central catheter for at least another 8 to 10 weeks.

A day at a time.

Love,
Justin

Day 24

2004-09-13T23:23:00.000-04:00

Sunday and Monday, Days 23 and 24 were pretty similar to Day 22 in that I have not been feeling bad at all and have been able to eat, but also have had a pretty high level of fatigue most of the time. I am grateful to be feeling pretty good and for not getting fevers, but I think there has been a part of me that was hoping I would feel a little stronger every day, and I’m not noticing that. So once again, I’m realizing this is a long process and I need to be patient. I really am grateful that I’m doing as well as I am and that I’m at home and not in the hospital.

Sunday, I finished my Vancomycin, which is the antibiotic I’ve been taking twice a day intravenously for several weeks to clear up the MRSE infection I got in the hospital. I’ll be interested to see if I feel any better after stopping it, because the doctor said it can cause fevers and lack of appetite.

Hanging in there with your help,
Justin

Day 22 - catching up

2004-09-11T18:23:00.000-04:00

First of all, let me apologize again for being so negligent in keeping this blog updated. I know some of you may worry when I don’t write for a while. The bottom line is I have good days and not so good days, but overall, I’m doing fine.

I did come home on Tuesday (Day 18) after they put a PICC in my arm. It was a bit difficult for the surgeon (and consequently for me) because I have an unusual vein structure in my arm so where most people have a single vein, mine splits into two, and the surgeon started down the wrong split. When she discovered the problem, it went in fine.

Wednesday (Day 19), I was extremely fatigued even though I don’t think I had much of a fever.

Thursday (Day 20), I went in for my second weekly clinic visit. They were very pleased with my blood counts.
WBC 4.3
Hgb 10.5
Plt 176

Friday (Day 21), I went back to the clinic for a bone marrow biopsy/aspiration. It was probably the least painful of the 7 bone marrow biopsies I’ve had. The PA who did it did an excellent job. They’re sending samples of my circulating blood as well as the bone marrow samples off for cytogenetic testing. The PA predicted that the percentage of stem cells from the new bone marrow in the circulating blood would be 100%, and the percentage in the marrow at 95%. We won’t know all the results for at least 2 weeks however. Later in the day, I ran a pretty high fever which made me feel a bit lousy but mostly stole my appetite and sapped my energy levels again.

Today (Day 22), I’ve had a pretty good day so far.

Again, I won’t be making entries every day, but will try hard to do it every 2 or 3 days instead of 5. Thank you for caring and for supporting me through all of this.

Love,
Justin

Day +17

2004-09-06T23:47:00.000-04:00

Today was the first day in a while where my temperature stayed below 100°. In addition, my blood cultures have all continued to come up negative. As a result, there is a good chance I will be able to come home again tomorrow. The main thing that would prevent it is if something like another fever or GVHD shows up between now and tomorrow morning. It feels much better to have no fever and be able to eat something. The other thing they are likely to do before I leave tomorrow is install some kind of new line – either another Hickman catheter or what they refer to as a PICC (peripherally inserted central catheter) line which is put in the upper arm and threaded through a vein to the jugular. It is a central line and is much easier to install, but only has one lumen (line), whereas the Hickman has three lumens.

I may also have to continue my antibiotic (called Vancomycin) for another week or two because they’re not convinced that my fevers were not caused by some kind of infection. One interesting tidbit I learned about this antibiotic is that while I thought it was a powerful antibiotic because it was the third one they gave me, the doctor says it is not considered powerful, but is good at fighting the kind of blood infection I had (called MRSE), whereas penicillin is not. It actually doesn’t kill bacteria as much as just keep it from spreading, allowing the immune system to knock out the existing infection. I like that idea.

They doctors are very pleased with my blood counts, especially the platelets, and feel I probably won’t need transfusions any more.

WBC – 4.1
Hgb – 10.5
Plt – 122

It would be nice to go home tomorrow.

Love,
Justin

Eric Masson,
I’ve marked October 28 on my calendar and I along with many others who read this blog will keep you in our thoughts and prayers prior to, during, and after your transplant. I’m convinced it helps. If you’d like to email me directly, feel free to do so at jkhyatt[at]bluehen.udel.edu (replacing the [at] with @).

Day +16

2004-09-05T20:45:00.000-04:00

Well it’s Sunday evening at the hospital (more or less real time now). It’s been a good day with no high fever yet (8:30 PM), plus I was able to eat something.

The doctor this morning said they won’t know much about the cause of my fevers and loss of appetite until the cultures have cooked a while longer. He said the problem could still be an infection, but it also could be the start of GVHD. If it is GVHD, we should soon see another symptom like skin rash, diarrhea, or a liver problem (jaundice?), and if any of those show up, they will biopsy the appropriate organ. So far, I have no other symptoms. The third possibility is that the drugs could be causing the problems, although I’m not sure which would be the potential culprits. He sort of indicated that if the cultures are negative, I may go home Tuesday, but also said that if I was still here Friday, they would probably do the bone marrow biopsy here. I’m voting for going home on Tuesday.

This evening, the nurse said the cultures are still negative, so it may have been unnecessary to remove the Hickman catheter.

WBC – 5.9
Hgb – 10.1
Plt – 113

Love,
Justin

Day +15

2004-09-04T23:59:00.000-04:00

Saturday morning, I woke up feeling pretty good. After giving myself my morning dose of antibiotic, I took my temperature not because I felt bad, but out of curiosity because I used the same line as they had used for magnesium and I was worried that something like an infection in that line might be causing the fevers. My temperature had gone from about 99.5° before to 101.0° after. It came down pretty quickly, but I was concerned, so I called the BMT unit at the hospital. They told me to come in and they would take out the catheter right away which they did after drawing blood cultures. It seemed like they had already decided that that was what they would do if I spiked another fever. They then admitted me again and I developed a pretty high fever that afternoon leaving me feeling wiped with no appetite again. They temperature went up to 101° again, but came back down early Sunday morning.

Part of me wonders whether they took the catheter out partly because it was the start of Labor Day weekend, and they didn’t want to have to call in a surgeon later in the weekend if necessary.

I’m not glad to be back in the hospital, but it’s nice not to have to worry about the fevers at home. Additionally, the cultures they took should give us a clue about what the fevers are about. The problem is that they have to wait up to 48 hours to see if the cultures develop anything, which means Monday is the earliest they would make a decision, but since it is Labor Day, they may not be able to get another catheter or line inserted until Tuesday, so that is probably the earliest I could come home again.

I’m sure it’s helpful that we live so close to the hospital (15 – 20 minutes), because they are more likely to let me ride out a fever at home or send me home sooner than they would if I lived 3 or 4 hours away.

Love,
Justin

Day +14

2004-09-03T23:59:00.000-04:00

I’m sorry I haven’t written for a while. I’m actually writing this on Sunday, but I think I’m going to make this just for Friday and then write again. I’m not planning to write every day now. For instance, Thursday was pretty uneventful, so I didn’t plan to write then. On Friday, Day 14, I went in to the bone marrow clinic for my first of some number of weekly outpatient visits. My counts were really good and the doctor seemed almost ecstatic. They had ordered red blood cells to transfuse me, but it turned out they weren’t needed because my hemoglobin went up. My WBC and ANC are both well into the normal range, the platelets are near normal, and the hemoglobin should get there before long. They did give me two hours worth of intravenous magnesium because my levels were so low. My next visit is scheduled for next Thursday, and they also scheduled me for a bone marrow biopsy on Friday.

WBC 5.0
Hgb 10.4
Plt 99
ANC 3.5

Subsequent to the clinic visit, I developed quite a fever in the afternoon, and it lasted well into early Saturday morning. I called the clinic at about 5:00 PM, when I noticed a fever of 100.7° (I’m supposed to call if it exceeds 100.5°) and they told me to come in if I started feeling a lot worse or got shaking chills. My temperature went up to about 101.4°, but I never felt a lot worse, so I just rode it out. My fever broke at about 4:00 AM Saturday morning. I felt really weak from the fever and essentially ate nothing all day Friday, but I was still glad to be at home.

BTW, the hair loss has started in earnest. So far it is mostly coming off the top of my head and is making a mess everywhere I rest my head.

Love,
Justin

Day +12 - I'M HOME!

2004-09-01T23:42:00.000-04:00

I’M HOME!!! It’s amazing how good it feels to be at home and not at the hospital. It’s actually been very emotional for me. I’ve wept several times today just from the relief of being at home. Part of that might be that some part of me remembered that one of the possibilities was that I would never make it home from the hospital. I didn’t think about that at a conscious level much at all because I always felt like I would get home, but I’m sure there was a part of me that knew it didn’t have to be that way. Being outside, moving around, eating foods that were actually appealing, sitting on the porch, etc. all felt soooo good. And I’m so much more comfortable here, that I’m sure it will speed my recovery to feeling more normal.

Driving home from the hospital at around noon today, including stopping to get a truckload of drugs at the pharmacy (which took a while), I realized that I was in no hurry. It was a nice day and I had nothing I had to get to. I also realized that for the next 3 or 6 or 12 months, I’m not really going anywhere. Besides doctor’s appointments, there’s nowhere I have to be and it is an amazingly different perspective on my “busy” life. IOW, in my “normal” life, I’m “busy” and often have “somewhere I have to be”. But because I’m sick and can’t do all those things without risking my life, I can take maybe a year off from all that.

Last night at 10:00, my temperature was 100.1°. The nurse said, “Uh oh. If you spike a fever, you won’t be going home tomorrow.” I was a little worried, of course, but was also pretty sure it would go down without spiking, because I didn’t feel very bad and it was sort of a pattern I had seen before. At 11:00, it was at about 99.8°, and when she checked again at about midnight, it was about 99.6°. Then in the morning it was down even more, so my suspicion was borne out.

I have about 10 prescriptions that I take 2 or 3 times a day each. I also take an antibiotic intravenously (through my catheter) which I was shown how to do myself here at home by a nurse who came this evening. It’s interesting, the medicine comes in a ball that contains its own pump in that there’s a spring that keeps the liquid under pressure. It also doesn’t require any help from gravity so I can carry the ball around in my pocket.

My platelet count was up satisfyingly today. It’s definitely being created by my new marrow. My hemoglobin is up primarily because of the transfusion I got yesterday. There will not be daily counts now for a while because I’ll only be having them taken once a week or so unless I wind up back in the hospital for some reason. Also to follow up on yesterday’s normal blood count ranges, I have a sheet here that indicates that for me, normal WBC is 4 – 11, normal Hgb is 14 – 18, and normal Plt is 150 – 400.

WBC 3.3
Hgb 9.8
Plt 38
ANC

BTW, I’ve just corrected yesterday’s blog to add a “not” that I left out about feeling worse by 6:30 PM.

Loving being at home …

Day +11

2004-08-31T18:46:00.000-04:00

They’re still saying I’m coming home tomorrow! Please understand that this does not mean we’re completely out of the woods. We still don’t know what graft vs. host disease is going to look like or involve, and I’ll be on immune-suppressant drugs that will leave me vulnerable to all kinds of bacteria, viruses, and fungi. Still, I’m really glad to be coming home.

For those of you watching my blood counts, notice the WBC and ANC counts. I haven’t seen these levels at all in the 3 ½ years I’ve been going to the hematologist. I got 2 units of packed red blood cells today “for the road”, and the doctor says that the platelets only dropping from 29 to 27 with no transfusion may indicate that the new marrow is starting to produce platelets pretty well. I asked the doctor about what it is the immune-suppressant drugs suppress. He said they don’t suppress the neutrophils, they suppress primarily the T-cells which are what attack foreign bodies. They are what cause the GVHD and are also what attack the leukemic bone marrow, so it is a tricky balance to get enough attacking to see the graft vs. leukemia, but not so much that the GVHD is bad. I believe the T-cells also are involved in attacking infections, so that’s why we must be so careful about not exposing me to infections of any kind.

I had a good day. My appetite improved a little during the day so that I ate almost all of my dinner. Also, it is 6:30 PM and I have not started to feel any worse.

WBC 3.5
Hgb 8.3
Plt 27
ANC 2.6

Someone asked what “normal” counts are – it’s a good question. If my memory serves me correctly (and don’t forget that I’m 52 years old), my WBC is actually approaching a normal range whose minimum is around 3.5 or 4.0. The lower end of the normal range for Hgb I believe is around 15, although it might be a bit lower than that. Platelets should be around 250 or 300 I believe to be considered normal, although I don’t think anyone worries much about any counts that are at least 100. I’m actually not sure what a normal ANC is.

It’s hard to believe I might be home tomorrow, and again, I thank all of you for your love and support which helped me get through this so well and so quickly so far.

Love,
Justin

Day +10

2004-08-30T19:03:00.000-04:00

I felt pretty good most of the day today. It seems I have fallen into this pattern of starting to feel a bit worse at about 5:00 PM, my temperature goes up some, and I lose my appetite. Last night I felt pretty good again by the time I went to sleep and so I slept well; I hope that happens again tonight. I wasn’t as sleepy today as the last several days. The good news is that my counts are going up as they predicted and this is due to my new bone marrow. For those of you who have been following my counts, you’ll see that the WBC and ANC are both up substantially and I am no longer considered neutropenic. It is normal for the hemoglobin and platelets to take longer to bounce back for a couple of reasons. One, they are longer lasting cells, and two, I’ve been getting Neupogen to encourage the production of white blood cells. The doctor says that if things continue to go well, I could be home on Wednesday – no promises.

The infection in my blood that I got over the weekend appears to be a bit problematic. It turns out that it is a gram-negative bacteria (I don’t know the name of it) which means that it is quite resistant to antibiotics. The infectious disease doctor who came to see me today said that it is also not a particularly nasty bacteria in that it doesn’t generally cause severe illness. I think it is also a fairly common bacteria found on the skin and the problem it is creating here besides making me a little sick is that it is a big danger to other patients in this bone marrow transplant ward. The result is that they put me in “isolation” meaning people that come in have to be gowned and gloved so they don’t carry the infection elsewhere. So while people don’t have to wear masks anymore (because I’m not neutropenic), they have to wear gowns and gloves. I think the fact that I felt so well for much of the day is indicative that the antibiotics (and maybe my new neutrophils) are winning the battle against the bacteria.

WBC 2.0
Hgb 8.3
Plt 29
ANC 1.2

Not counting chickens, but Wednesday is the day after tomorrow …

Day +9

2004-08-29T22:51:00.000-04:00

Today was a bit better than yesterday. I didn’t have the persistent headache and I had a little appetite. I did sleep a lot again. One of my theories about the sleepiness is that my body is diverting energy to doing other things like engrafting new bone marrow and creating blood again. My counts did show evidence of new bone marrow working, especially in the absolute neutrophil count which had been at 0 for 5 days and this morning was at .7. Technically, this means I am no longer neutropenic, but the doctor wanted to keep the neutropenic precautions for another day. The doctor also said that there was nothing out of the ordinary and things seemed right on track. This evening, I did get a flush feeling in my head along with a little bit of a headache. It’s like the feeling I usually get when the platelet transfusions first start, so I wonder if it could be from the engrafted bone marrow creating platelets or something.

I got another platelet transfusion today, and it sounds like it was mostly because they had platelets that were going to expire soon and they didn’t want to waste them. So it wasn’t so much that I needed them, it was more like giving them to someone was better than throwing them out. Interesting.

WBC 0.7
Hgb 8.5
Plt 26 (48 after transfusion)
ANC 0.7

Still hoping to come home later this week …

Day +8

2004-08-28T20:17:00.000-04:00

Today was another difficult day. I had no appetite, a persistent headache, and weakness. I’ve also developed some difficulty in swallowing pills. The doctor says none of this is at all out of the ordinary. I may start to feel better when my counts start coming up, which may be tomorrow.

I got another platelet transfusion today.

WBC 0.2
Hgb 8.9
Plt 13 (42 after transfusion)
ANC 0.0

I think I can hear the train approaching …

Day +7

2004-08-27T22:22:00.000-04:00

It turned out last night that my fever spiked at 101.2°. They drew blood and gave me a stronger antibiotic. When the tests showed bacteria in my blood, they gave me a still stronger antibiotic. By morning, my temperature was in the 99°+ range. Today turned out to be my hardest physically so far. I had a headache all day that Tylenol didn’t seem to touch and really low energy. I wound up sleeping much of the day and didn’t eat anything. The fact that I lay in bed all day and didn’t manage to get today’s paper read is a pretty good indicator of how wiped I felt. While it was a hard day, it wasn’t terrible and I still consider that I’ve had it pretty easy, so I’m not complaining. When I told the doctors this morning about the theory that some nurses had that spiking a fever in the hospital makes it less likely that it will happen at home, they both laughed and said that old wives tales die hard.

I got another platelet transfusion today, and with a little luck, it will be my last. However, fevers seem to consume platelets, so it’s possible I’ll need another transfusion tomorrow.

WBC 0.1
Hgb 8.9
Plt 16 (31 after transfusion)
ANC 0.0

I think I can hear the train approaching …

Day +6

2004-08-26T21:17:00.000-04:00

I’ve definitely swung back to the low energy, less appetite state that I was in last weekend. I actually wound up sleeping most of the day. The doctor this morning said that he’s pretty sure that the elevated temperature last night was due to the platelet transfusion. At any rate, it backed off and has been in the same range it’s been for quite a while. The doctor gave me an A+ this morning.

As the night wears on, my temperature is climbing again. It was last measured at 100.0° and at 100.5°, they go through the whole fever spike routine. As my day nurse was going off, she said she thinks it would be good if I spiked a fever before I left the hospital because almost everyone does it at some time and if not at the hospital, then usually at home which requires another stay in the hospital. She also believes that having it before I leave makes it less likely that it will happen at home. I believe her, but have no control over that.

WBC .2
Hgb 9.0
Plt 22
ANC 0.0

Another day closer to coming home …

Day +5

2004-08-25T22:29:00.000-04:00

I’m still feeling good today. The doctor is happy with the way things are going. He says the train is coming and will arrive Sunday morning – that’s when the blood counts should go up from the new bone marrow. One of the nurses says that some patients go home on Day +10 which is Monday. I’m not counting on it, but it’s nice to think about going home that soon. As I go to bed, my temperature is up to 100.2. If it gets to 100.5, they do a bunch of things to make sure I’m not infected somehow. I think my temperature has tended to go up in the evening, so maybe it will go down by morning. Then again, maybe not.

WBC .1
Hgb 7.8
Plt 11
ANC 0.0

I got transfused with platelets and 2 units of red blood cells and the counts above were prior to the transfusions. They actually draw the blood for labs at about 5:00 AM every day. I may need one or two more transfusions before Sunday.

Still feeling good and grateful …

Day +4

2004-08-24T22:06:00.000-04:00

I feel like I have news today, and it’s good news. It may not seem like much, but it’s a pretty big deal to me. The news is that I feel significantly better than I have in quite a few days. To be prepared to feel worse and even expect it to a certain extent, and then feel better is a big gift or a small miracle to me. Early on, the doctors had said that most people start feeling worse starting on about Day +3 through about Day +9. So to start to feel better on Day +3 and continue to improve on Day +4 is no small thing. My appetite has pretty much returned and I don’t feel weak. The doctor says maybe I’ll be one of the lucky few who doesn’t get a neutropenic fever. Even if I do get one, I figure it will be shorter because I’m closer to the day when my counts start back up.

I asked the doctor about how we know when the new immune system has successfully eradicated the diseased bone marrow. He said they look at the circulating blood on a genetic level and can see the different markers for the different marrow. They then do a bone marrow biopsy/aspiration on about Day +21 to look at the actual marrow on a cellular and genetic level and can tell what the balance is. He said it’s usually about Day +30 when they see the old marrow eradicated.

WBC .2
Hgb 8.7
Plt 20
ANC 0.0

It looks like I might need another platelet transfusion tomorrow or sometime soon.

Feeling good (and feeling good about that) …

Day +3

2004-08-23T19:06:00.000-04:00

Once again, it was a day much like the last several with no appetite and periods of weakness. I was told early on that Day +3 is when the patient often starts to feel worse because of chemotherapy effects and neutropenia. Either I started feeling worse over the weekend with the loss of appetite, or I haven’t started feeling worse yet. Either way, I consider it a victory. My primary oncologist, whom I haven’t seen much because he is not on rotation this month, stopped in today and when I said I had no appetite but didn’t really feel nauseated, he said that actually is a form of nausea. I’m trying to change my usage from “feeling nauseous” to “feeling nauseated” because strictly speaking, nauseous means causing nausea and I hope I’m not doing that.

I’ve been here 12 days now, and if all goes well, I could be out in 11 days, which would put me past the halfway point. Even if I’m not out in 11 days, it feels good to think about being possibly past the half way point for the hospitalization.

WBC .3
Hgb 8.7
Plt 29
ANC .1

For those of you paying attention to my counts (if any), you’ll notice my WBC and ANC have both dropped off noticeably. This is expected.

Your friend with the new bone marrow growing …

Day +2

2004-08-22T23:46:00.000-04:00

Not much news today. I still have a lot of weakness, little or no appetite, but also no real pain or nausea. It looked like my temperature was creeping up from the 97.5° range to 98.8° range, but it didn’t go much higher. Apparently, a neutropenic fever (100.5° or above) is quite common in this point in the process, and if that happens, they do a portable chest X-ray, culture all the ports on the Hickman catheter, and give a different antibiotic which usually takes care of it.

I also go through periods of just being uncomfortable, again without any pain, but just a restless discomfort. It then subsides after a while or after a nap if I can manage to fall asleep.

WBC .8
Hgb 8.8
Plt 14 (31 after transfusion)
ANC .?

Another day closer to recovery …

Day +1

2004-08-21T19:14:00.000-04:00

I feel a bit better than yesterday, although I am being pumped so full of all kinds of drugs, that I fluctuate between feeling weak or flushed or tired to feeling pretty good. I know it could have been worse thus far, so I’m working on being grateful. I am going to be shut in this room for a while, so I’m doing one day at a time. It also can get a bit discouraging thinking about all the drugs going into my body. I realize they are doing a good job of making me feel OK, so I’m thankful for that, but for someone who would only rarely take an analgesic… Well, I look forward to getting off the drugs.

WBC .5
Hgb 9.1
Plt 22
ANC .4

Hanging in there …

Day 0 - Transplant Day

2004-08-20T18:35:00.000-04:00

Well, I’m transplanted! It seemed to go well. It took a bit over a half hour and was not as anti-climactic as they led me to believe. I mean something was definitely happening. Jody was here for the whole thing and that was nice. I’m kind of low on energy, so I won’t be going into much detail now, but know that it happened and I’m doing well. It’s waiting now. My blood counts will drop, I will get transfused when needed, and then about Day +9, we’ll see the counts going up from the new marrow. I may feel kind of sick during the week leading up to the new marrow starting to kick in. I’m considered neutropenic again and will be until my counts come up naturally. I’m not allowed out of my room until then.

WBC .6
Hgb 9.1
Plt 20
ANC .6

Thank you all for your support – I’m sure it helped with the actual transplant, and if you can keep it up, it will help with recovery as well. I need you guys.

Love ...

Day -1

2004-08-19T22:39:00.000-04:00

It’s my “day of rest” before the transplant tomorrow. My counts are now down and this will be my last day of not being neutropenic until the new marrow starts producing cells starting at about Day +9 or so.

WBC .9
Hgb 9.3
Plt 27
ANC .7

I still feel OK, but am definitely not feeling as well as I was. I’m losing my appetite and the doctor encouraged me to not make myself eat. They will give me all the nutrition I need intravenously, and if I develop some of the gastrointestinal problems that are fairly common, I may be glad I don’t have food in me.

Not feeling quite as well sort of changes how I feel about everything, but I am still positive and confident. I never expected to feel well all the way through and all I have to do is get through the hard parts, which I can do. It still helps to know you are all out there pulling for me.

Love ...

Day -2

2004-08-18T23:42:00.000-04:00

I was not only not neutropenic today, I was surprised to see my hemoglobin and platelet counts actually go up a little. To be honest, there was a part of me that was a little worried that after 6 days of chemotherapy, my bone marrow that is supposed to be getting killed off was looking too strong. However, the doctor had no such concern and said that he was very pleased with the way things are going and is confident that the transplant will engraft and take over making blood parts. Apparently, the drugs I am taking (like steroids) can do things that encourage the production of blood parts.

WBC 1.6
Hgb 10.0
Plt 40
ANC 1.5

I’m actually done my chemotherapy now, and I have trouble believing I feel as well as I do. Tomorrow is a “day of rest” between the chemotherapy and the transplant on Friday. Tonight, they started me on immunosuppressant drugs which are pumped in around the clock for a while, so now I have to take the pump with me everywhere. I believe this will continue at least through the rest of my stay in the hospital.

Love always...

Day -3

2004-08-17T22:42:00.000-04:00

OK, this must be getting boring for you because so little has changed. Today’s counts indicate I am in my third day of not being neutropenic.

WBC 1.8
Hgb 9.4
Plt 36
ANC 1.5

This means visitors don’t have to wear masks. Also, today it meant that I could take my first shower because I had to wait 5 days following the insertion of my Hickman catheter in my chest/neck so it could heal enough to not get infected, but I also can’t shower when I’m neutropenic and I will be neutropenic again soon.

Today, I got my first of 2 days of the second chemotherapy drug, but my body hasn’t noticed anything different. The doctor said it would probably take a few days before I felt the effects.

No more cute pictures to offer. Please know that your love, prayers, support ARE helping. I’m convinced that it is partly why I’m still feeling so good spiritually and mentally. I still feel good physically also, but I don’t expect that to last and I know that I will still be getting strength from you.

Love from the hospital…

Day -4

2004-08-16T22:08:00.000-04:00

Once again, there’s not much to report. I’m still feeling good after 4 days of chemo. I was not neutropenic for the second day in a row and that will change soon.

WBC – 2.2
Hgb – 9.6
Plt – 41
ANC – 1.7

Tomorrow, I start my last 2 days of chemo with a different drug which could be a bit rougher, but I probably won’t feel the effects for a day or two. I don’t know if I’ve mentioned this before, but they are planning on transplanting all 5.1 million stem cells that Lisa donated. Today, the doctor said he was quite confident that the engraftment would take successfully, partly because it usually does (maybe a 2% failure rate), and partly because I had only 8% blasts in my bone marrow which is relatively low. He still is quite optimistic about the possibilities of a cure.

I thought you might enjoy this picture of my sister, Lisa and myself:

Justin and Lisa a few years ago - we think I was 4 1/2 and Lisa was 2 1/2

Day -5

2004-08-15T23:28:00.001-04:00

I had my third dose of chemotherapy and still feel no effects and while it was predicted, it still seems strange to me. It turns out I was not neutropenic today, but I didn’t find out until 5:30 PM when several visitors had come and gone already and didn’t realize they didn’t have to wear masks. WBC – 2.4, Hgb – 10.4, Plt – 51, ANC – 1.6. The last count (absolute neutrophil count) has to be .5 for me to be considered not neutropenic, and it could be back below that tomorrow. I actually could have hugged more of my visitors if I had known.

I changed rooms today to one that is bigger and feels better, but since there isn’t much more news to report, I’ll just sign off now and not bore you with ramblings.

Love,

Day -6

2004-08-14T11:59:00.000-04:00

Not much new again. This morning, my WBC was at 1.4, my hemoglobin (Hgb) was 10.3 (up because of the transfusion of 2 units of packed red blood cells), and my platelets (Plt) were 57. The only explanation I could get for why the WBC was up was that it was probably the steroids they gave me. My absolute neutrophil count (ANC) was up from 0 to .2 and if it were to get to .5, I would not be considered neutropenic anymore, but that’s not likely to happen. The ANC is probably the best indicator of my ability to fight bacterial, fungal, and viral infections.

One of my kids was here today and asked me in the presence of a nurse whether I was getting a lot of drugs. I answered with an emphatic YES, and the nurse quickly said NO. In my world, where I hardly ever even take analgesics, I am taking a huge amount of drugs every day. In her world, there are BMT patients who are taking a lot more. Somewhere I read that some people can be taking up to 25 different drugs simultaneously.

I am still feeling really no effects from the chemotherapy, and the medical staff all say that they would expect the first 4 days to be that way. The second chemo drug they give me on the last 2 days of chemotherapy is a bit rougher.

Maybe the best news is that I just got connected to the internet (it’s actually 2:30 Sunday morning). I know that there are a number of people who rely on this to keep up, so I wanted to get it done. I should be able to keep up pretty well now.

Love actually…

Day -7 Again

2004-08-13T23:59:00.000-04:00

Not a lot to report today. Unless you call my first dose of chemotherapy a lot. It doesn’t feel like much – I feel fine, and I don’t dwell too much on thinking about its job of killing my bone marrow. I also had two units of packed red blood cells because I was getting more anemic. This morning, my WBC was at .8, my hemoglobin (Hgb) was 8.2, and my platelets (Plt) were 66 (up because of yesterday’s transfusion of platelets for my operation to install the Hickman catheter).

I really have noticed no effects of my chemo, although it is true that they give me prophylactic meds to ameliorate the expected unintended effects (like nausea, live damage, etc.). The chemo I get for the first 4 days is not expected to make me feel too bad. The one I get the last 2 days is rougher, but I still may not react for several more days until the blood counts have plummeted.

Although I haven’t really been bored much yet because of the nice stream of visitors I’ve had, I can understand how boredom can be a problem. I pretty much just stay in my one little room all day and night. I’m allowed to wander through the BMT unit, but all the other patients just stay in their rooms, too. The only other patient I’ve met and talked to briefly a few times is the one whose parents and girlfriend were at the orientation on Tuesday. I do sometimes wander around just to move around because I feel the need to do so.

I still haven’t successfully accessed the Internet to post to my blog, so these updates are piling up a little. I hope to remedy that soon.

With love,

I'm In

2004-08-12T23:59:00.000-04:00

I got up this morning and shaved all the hair on my head to 1/8 inch, including mustache and eyebrows. I didn’t eat or drink (since midnight) because of the operation to insert a Hickman catheter into my chest which I was scheduled to get at around 11:00 AM. I showered, loaded my stuff in the car, and then Jody and I headed off to the hospital. I was surprised how anxious I wasn’t – no sense of dread or anything like I was afraid I might. The One In Charge has see fit to fill me with a sense of peace and equanimity.

We got to the hospital at 8:15 and went right up to the fifth floor to check in. I got a room called an LAF room which is for people who are having a full myeloablative transplant. I forget what the “L” in LAF is for but the AF is Air Filtration. It has a big plastic screen which the patient is behind, while everyone else is in front of, including the nurses and doctors most of the time. It is essentially the “bubble”. I don’t need the LAF room (and the plastic divider can be moved aside), so I will be move into another room in a few days when one becomes available. After labs were drawn, Jody and I sat around in the room until about noon when we were told that the platelets that I needed to have transfused had not been ordered and would not arrive from the Red Cross until about 1:00 PM, so everything would be delayed. My blood counts showed me to be neutropenic (may absolute neutrophil count was 0), so everyone who came in the room, including nurses and doctors, had to wear a mask and wash their hands.

At about 2:00 PM, the nurse informed us that the operating room for the catheter insertion was being used and we would have to wait until it was available, but we were assured we would still have the operation and start the chemotherapy. I still hadn’t had anything to eat since supper yesterday. Finally, at about 3:30 PM, they were able to transfuse the platelets and then get me down to the operating room at around 4:00. The operation went fine and was not all that uncomfortable. This catheter will stay in my chest probably for at least 100 days and is used to draw blood and insert all kinds of drugs and blood products as well as nutrition if necessary. I got back to my room at about 5:30 PM and ate my supper and most of my lunch. At about 6:00, I was told that I would not get chemotherapy that day because the doctors wanted to be around for my first dose and there were gone by then. As a result, everything has now been pushed back a day and my transplant is scheduled for August 20.

The doctor who is charge of the bond marrow transplant team here came in and talked to me for a while this afternoon. He also patiently answered all our questions. Some of the things he said that I found interesting were things like the time I’m taking the chemotherapy will probably not be bad and that all the way through the transplant, I will probably feel fine. He said I should start to feel worse on about Day +3 (3 days after the transplant) and will probably feel worse still through about Day +9 when the new marrow will start putting out new cells. After that it gets really unpredictable because each patient reacts differently. If all goes well, I may go home by about Day +14, but complications could extend the stay. The things that could go wrong are too numerous to list, but basically it could be some kind of infection because of the neutropenia and immunosuppressant drugs or a manifestation of Graft Versus Host Disease (GVHD) which could be mild or severe or anywhere in between. He said that occasionally but not frequently, he gets a patient who doesn’t have problems with infections or GVHD and successfully wipes out the leukemic cells. They might ask him when they’re going to start feeling bad and are told they’re going home the next day. I told him that I was voting for that outcome. Actually, while I would like that path, I’m certainly not counting on it. He has been doing bone marrow transplants since 1982 and has seen huge advances since then, especially in the drugs they have available to treat the problems that arise. He says I have I lot going for me including not actually having leukemia yet and being healthy. He said several times that he is quite positive about my chances to be cured which he says is a good 50 – 60 percent and is a good cure rate. I still wonder if that is a conservative answer that they feel is good for not getting expectations too high. It would make sense if they did that. Anyway, those numbers don’t seem to frighten me much because I still have confidence that I will get through it all.

Some of you will find it somewhat amusing to hear that when I asked several times if there was Internet access in the hospital, I was told that there was, only to find out that what is available is a telephone line for dialup access! To me, the correct answer to my question would have been no, we don’t have Internet access but you can dial up if you have dialup access. As I’m writing this, I don’t have a dialup provider so will have to figure something out. Also, a dialup connection is much less conducive to getting work done for my employer. Oh well.

I’m feeling good and am glad we’re underway.

Last Day Before Admission

2004-08-11T13:52:00.000-04:00

Lisa finished with her harvest yesterday!! We went in to Jeanes Hospital for an orientation at 2:00, and Lisa was just finishing her apheresis at that time. She started at about 8:30 and went until about 2:00 in the afternoon, making it about 5 ½ hours, but they got the 5 million stem cells they wanted. Although she had a little bit of a headache and upset stomach, I’m glad she didn’t have to stay for a third day of harvesting. She got her appetite back yesterday evening and is feeling much better this morning.

The orientation was very nice for many reasons. Besides Jody, all of our children, and Lisa, there were three other families there. One group comprised the parents and girlfriend of someone who is facing an autologous transplant to treat ALL (Acute Lymphoblastic Leukemia). The patient was not at the orientation because he was undergoing chemotherapy for his leukemia. There was a couple from the Scranton area who are facing a allogeneic transplant for the husband, with his sister being the donor. He has AML (Acute Myelogenous Leukemia) and has been undergoing chemotherapy since about March to treat it and will be going in for his transplant on August 26th, I believe. They have 3 small boys (5, 3, and < 4 months?) and seemed like a really nice couple. We’ll probably see them again when he comes in for his transplant. The other couple was one who has been through the ordeal. The husband had an allogeneic transplant with a matched unrelated donor in April of 2003 to treat ALL and is still fighting GVHD, although he was not wearing a mask or anything. It was nice to hear the experiences of a patient and caregiver who have been through this. People who have or are going through this seem amazed that I have had no chemotherapy or transfusions thus far and I’m about to undergo the transplant.

We learned many other useful things including very practical things like what to bring to the hospital, hospital visitation limitations, home care, etc. It seems like a really nice set up which they said to think of like going to live in a hotel room for a month. Patients can pretty much wear what they like, set up their rooms the way they like, bring whatever they want (with some restrictions). Apparently the days of chemotherapy are not as bad as I had pictured. It is true that the chemotherapy is devastating in the way it kills all kinds of good and bad cells in the body, including the bone marrow. However, they said that many patients still feel pretty good after a week and have been prepared for the transplant. It is after that when things get worse with blood counts (especially the white blood count) plummeting. Hair loss occurs about 2 weeks after start of chemotherapy.

Visitation rules are not terribly restrictive. There are only 2 or 3 visitors allowed in the room at a time, partly because more would tax the air filtration systems. People who are sick and small children should not visit. All visitors must wash their hands and don a mask before entering the patient’s room. The visiting hours are listed as 11:30 AM (doctors are doing rounds earlier than that) to 11:30 PM, but I don’t think that they throw people out even then. Visits will be coordinated and scheduled by either Jody or Seth.

Our meals are prepared specially and served before those for other patients in the main hospital because of wanting to minimize risk of bacterial, fungal, or viral contamination. This means we eat all our meals early. Flowers and plants are NOT allowed and balloons are discouraged. The snail mail address is:
(Patient Name)
5th Floor / BMT Unit
Jeanes Hospital
7600 Central Avenue
Philadelpha, PA 19111

One of the main reasons I like the orientation was because of the way it added to my feelings of confidence and determination that I will get through this and will get better. It was reassuring to hear them say that engraftment will occur about Day +6 (I can’t remember the number but the Day numbers are relative to the transplant day, so tomorrow when I go in, it will be Day -7), white blood cells will be produced first, you will go home when the following conditions are met, etc. It helps me think that these things will happen.

I heard from my dermatologist who said my tests for systemic Lupus all came out negative. It was what he expected, but it still good to know, although even if there was SLE, one of the treatments for it is a bone marrow transplant.

From this point on, I’m guessing updates to this blog will be more frequent because I’ll have more to report. So stay tuned if you want to know what’s going on. Thanks again to all of you for your support thus far.

With love …

Extraction Underway

2004-08-10T09:15:00.000-04:00

As I write this, Lisa is doing her second apheresis which extracts stem cells from her blood. She went in yesterday and they extracted 2.3 million stem cells. While I am really impressed by her ability to pump out 2.3 million stem cells in just a few hours, they need to get at least 5 million and would like even more. Apparently, they can often get that many in one try, but sometimes it requires 2 or even 3 tries. Apparently, they time the harvest for when most people peak in their output of stem cells following the 4 day Neupogen regimen. However, different people peak at different times, and it may be that Lisa will peak today (she got another shot of Neupogen yesterday and will get another this morning), but they will do a third day of extraction if needed.

Because she has a catheter in her neck for doing the extraction, she stayed in a room at the hospital last night. I went to visit her and am amazed at how cheerful and extremely positive she continues to be. I am blessed indeed to be partnered with her through this process. She is a real inspiration and I love her dearly.

I am still on schedule to go into the hospital on Thursday to start my conditioning with the actual insertion of Lisa’s stem cells on the following Thursday, August 19.

I am also blessed to be partnered with my loving wife and loving children who also continue to be so totally supportive. We are all planning to go to the orientation at Jeans Hospital this afternoon to get a better idea of what to expect from the hospitalization and home care time. I will try to report back here tonight or tomorrow about some of those details.

I also continue to be amazed and humbled by the love and support of people in all aspects of my life, including people I don’t even know. People in the community where I live, where I work, and from my past whom I haven’t seen much over the last several years have truly been angels in my life. I have also become aware of some people I have never met and never will meet who have prayed and offered blessings. Whether they know it or not, all these people are allowing themselves to be instruments and messengers of God which literally makes them angels, and I thank the Lord for them.

Stem Cell Harvest Process Begins

2004-08-05T11:34:00.000-04:00

Well, the latest news is that the rash on my ears was diagnosed as discoid lupus erythematosus (DLE). This is not the serious form of lupus which is systemic lupus erythematosus (SLE), and it is treated with an ointment. The dermatologist doesn't believe that it is related to the MDS and feels it should have no impact on the transplant. He did, however, send me for labs to test for SLE, even though he is pretty sure I don't have that.

I saw my hematologist yesterday for the last time for a while. My white blood count was down slightly (from .8 to .7), my platelets remained at 33, and my hemoglobin dropped a bit again (from 9.0 to 8.6), so I'm getting quite anemic (I do get winded very easily). However, I think I'm lucky that my red blood cells (including hemoglobin) were the last blood part affected by the MDS, because for many, it is the first part affected and necessitates blood transfusions which are hard on the body.Yesterday, my sister/donor, Lisa started her four day series of Neupogen injections. My wife went with her and she learned how to give herself injections (intramuscular injection), because she needs to have them for the next three days. Last night, she said she felt great and that giving herself shots is not as difficult as she thought it might be. Lisa is being great about this whole thing, even though it may involve a few days of some level of discomfort. I will be forever grateful for her contribution to my chance at being healed. I am still on schedule to start my "conditioning" a week from today. In the meantime, there is an orientation on Tuesday, August 10 that we are going to, along with as many of our 4 adult children as can make it, and Lisa. We will learn a lot of practical things like what to take to the hospital, what the hospitalization portion is like, what the homebound part may look like, etc. We will have a chance to meet with someone who has been through it, along with the caregiver. We will also get a tour of the hospital rooms.

When I do go in on Thursday, I will be getting a platelet transfusion to boost my platelet count to at least 50 so they can install a catheter in my chest (called a Hickman catheter) for access to my bloodstream. Because I will need so much put into my blood as well as having blood drawn, and this will necessary for months, this Hickman catheter will enable that and be left in as long as necessary. After the catheter is installed, I will start my six day chemotherapy regimen, followed by a day of rest and then the stem cell transplant will be on August 19. If all goes well, I will be sent home after 2 or 3 more weeks in the hospital.

I have been having some wonderful, even heavenly, interactions with family and friends lately. One of the things that is hard is that I’ve been told that I have to be more careful around people because of the risk of getting sick due to my neutropenia (low white blood count). What this means is that I’m not supposed to be hugging or shaking hands or having any physical contact with others. I find this to be a difficult and totally unreasonable requirement, especially if it’s going to be true for up to a year. However, since getting sick could be fatal, we will have to figure out how to work things out so that I can get physical contact safely.

We Have a Schedule

2004-07-28T15:21:00.000-04:00

I just talked to my contact at Temple - Fox Chase and she said the insurance company approval for my transplant went through, so Lisa starts prep work tomorrow, is scheduled to start her harvest on 8/5, and I'm scheduled to start my "conditioning" on 8/12. There are things that could delay this, but this is now a likely scenario. I also am going in tomorrow to talk to my oncologist for the results of my test and to get a calendar, etc.

While I must admit to some degree of nervousness as the actual transplant approaches, I know that in virtually every regard, sooner is better.

A Donor is Found

2004-07-22T14:48:00.000-04:00

OK, here’s the latest. Monday, I went the dermatologist to have my flaky ears looked at because my oncologist was concerned that it might be a fungal infection. Both the young doctor I saw at first (Dr. Y) and the senior doctor he consulted with (Dr. S) were interested and bit confounded by what they saw. They said it doesn’t look like a fungal infection, but they didn’t like any of the other theories they came up with either. Dr. S said to Dr. Y that it was an “interesting presentation”. They took a couple of slices off one ear to send in for biopsy. They also said it was very unlikely to be skin cancer because it is symmetrical, as in on both ears. They also talked about cold damage, a discoid lupus (DLE) (as opposed to a systemic lupus (SLE)), and other things, but like I said, there were counter-indications for all of them. We’re waiting a week or two to get results from the biopsy.

The big news, however, is that I’ve got a sibling match for my bone marrow transplant and it’s my favorite sister, Lisa!!! I stopped by this morning and told her in person and she seemed delighted. I know I am quite relieved and happy. I discovered that I have been counting on a sibling match, realizing that I shouldn’t because there was a real chance of not having one. When FCCC called this morning, she said they found a match and it was some name like Joan. I said, “Who?”, and she looked again and said, “No, I mean Lisa” (she was looking at two different patients at the same time). For a second there, I thought I had a sibling that I was not aware of. She then said the oncologist, Dr. T wants to move along quickly so they wanted to schedule me for a battery (battery may be a particularly appropriate term) of tests some time next week. By the time I got to work, they had called and left a message that I was scheduled for tomorrow (Friday) from about 8:00 AM to 3:30 PM and the tests include a pulmonary function test (PFS), a MUGA scan (heart mechanics), a chest x-ray, and EKG, blood work, and a bone marrow biopsy, as well as a visit with a social worker and Dr. T. If the MUGA scan is to determine if I’m a Muggles, I can save them the trouble because I’m certain that I am (if that confuses you, don’t worry – it’s just a bad joke that readers of Harry Potter would get).

By the way, my weekly CBC showed my counts basically back to where they were before I got sick, with my platelets down a bit to 26K from 28K.

Thank you to everybody who has volunteered to get test as a donor for me. Finding a sibling match is really the best for my transplant, and the willingness of so many friends to be a donor makes me weep with gratefulness. One thing you could do is consider registering with the National Marrow Donor Program (NMDP) if you would consider donating to save the life of someone you don’t even know.

Another Feverish Weekend

2004-07-18T23:33:00.000-04:00

Right now, we are waiting for the results of the HLA typing to see if there is a donor among my siblings. The last time we checked with Fox Chase Cancer Center, they said the results usually take 12 working days from when they got the blood samples, which would take us to this Thursday, July 22, and I think that is probably the earliest we would hear. After the donor is located, there is further testing of the transplant recipient (for those of you who are getting confused, that’s me in this case), getting approval for the transplant from the health insurance company, and then further testing of the donor before the harvest is started. It seems each of these things will take a week or so, so they said it looks like late August is the most likely time for the transplant to happen.

In the meantime, here is what happened last week:

·         Wednesday, I went to see the doctor who originally drained my pilonidal cyst, and he said as far as he was concerned, I was done with it and he would not recommend doing anything further. I’ve healed well and he doesn’t even know if there’s much of a cyst left.
·         On Thursday, I woke up with a slight sore throat and some achiness, but I went to work anyway, hoping they would just fade. They didn’t fade much, and I was already scheduled at 3:30 for my weekly hematology appointment to have a CBC. I told them about my achiness and sore throat, but my temperature was 98.9 and my hematologist, Dr. H saw nothing in my throat. My blood counts were very close to what they had been the 2 prior weeks. Dr. H also discussed the possibility of me being treated with Neulasta which is a G-CSF (granulocyte colony stimulating factor) drug to boost my white blood count (WBC). The advantages of taking Neulasta are that it should boost my WBC to decrease the likelihood of more infections, plus if it worked, it would tell us that if I were to get a serious fever, a G-CSF would be an effective treatment. He left the decision up to me, so after thinking about it for a few minutes, I decided not to go ahead with that right now. That night, I developed a fever of about 100.4.
·         Friday morning, the fever was still at 100.4 and my throat was even sorer, so I called Dr. H and when I went in, they recorded a fever of 100.4 also, and Dr. H said he saw redness in my throat he hadn’t seen before so he put me on an antibiotic even though he thought I probably had some virus and not an infection. My blood counts all seemed to change quite a bit in one day, with my WBC going up from 1.0 to 1.4 (the highest it’s been measured since 02/03), the platelets going down from 35 to 28 (the lowest it’s ever been measured), and my hemoglobin going up from 9.4 to 10.0. I’m glad to know my body still knows how to increase the WBC when needed. The last reading surprised me the most because the red blood cells I would think would be a little more stable, and there’s not an obvious reason why they would go up as there is for why the WBC would go up (to fight the virus/infection). Dr. H also had no explanation why the hemoglobin would jump. I wonder if the different testing machine could be why. He brought up the Neulasta possibility again, but I said I didn’t know how to evaluate the wisdom of going one way or the other. I think he sort of took this as another declination to do it now, so we’re not. He then sent me for a throat culture and blood culture to check for a systemic infection. I felt pretty bad Friday evening, but the fever broke a little before I went to bed.
·         Saturday (yesterday), I felt a lot better, although still not great. I still and a sore throat and my right lymph gland had swollen so big, it was easy to see just by looking at me.
·         Today, I feel even better and while the lymph gland is still quite swollen, my throat is not as sore.

I find that getting sick is a bit worrisome because I realize that my weakened immune system could probably be overwhelmed pretty easily. While it seems like things are kind of dragging here lately, my hematologist said that things don’t usually move this quickly for a bone marrow transplant, so I guess more patience is called for.

Some Good Things That Have Happened Already

2004-07-09T15:26:00.000-04:00

On June 10, the day I got the definitive diagnosis that I had MDS, I got home from the doctor’s office at about 4:00 PM. I sat on our porch looking at our beautiful back yard on a beautiful day, waiting for my wife to get home so I could tell her. I was also feeling quite sad and teary and wondered how I was going to reach our four children (aged 27, 25, 22, and 20), of which the older two didn’t even live at home. Our 22 year old got home first, but I still waited for my wife to get home which she did within a few minutes. Within about twenty minutes after telling her the news, all four of our kids showed up and as we all sat on the porch, I broke the news to all of them and we had a good cry. We then all went out to dinner because no one felt like cooking and we felt like being together. The amazing thing was that I can’t remember the last time the six of us were together spontaneously on our porch or anywhere else. It was completely unplanned (by any of us). While I know a case could be made that something like that could be a mere coincidence that could be explained by probability, I also believe that a higher power really has everything under control and saw to it that we wound up together like that.

I have four brothers and a sister that have been so supportive and so willing to do whatever it takes to contribute to my wellness. I think they might even fight each other for the opportunity to be a donor and go through whatever that entails. They all say they feel lucky because at least they can do something. So many other people want to do something and to them I say if you just keep me in your prayers and keep positive thoughts in your head, you are doing more than you can imagine. I know it is frustrating for all my friends and relatives who want to do more, including my own parents and all my wife’s family, but I hope they all know that their love means more to me than words can express.

A few days ago, my sister wanted to have a prayer circle for me. At first, I was not really comfortable with the idea of being the focus of prayer circle and when I expressed this to my sister, she said we could make it about her. Anyway, she invited our parents, all our siblings and their spouses, and a few good friends of mine over to our house. Even though none of us had vast experience with prayer circles, we knew that we could all handle such an organic event and that however it turned out to be would be just what it was supposed to be. Indeed, it was a very special evening and I was deeply touched by the love and concern that was expressed.

I sent out a brief email to my friends and associates at work just so they would know what was going on and not be totally surprised when I wound up in a hospital going through chemotherapy and having a bone marrow transplant that kept me away from work for quite a few months. The responses I got were so sweet and thoughtful that I feel like weeping every time I think about it.

One of my brothers, who is involved in AA, mentioned to me one evening at a wedding that a whole lot of people in AA of whom I was unaware and whom I didn’t know were praying for me and keeping me in their thoughts. When I hear something like that, I once again feel almost overwhelmed by the amount of love and concern that has come my way – even from strangers.

Whenever we see a medical professional that asks about our kids, my wife has taken to always saying that we have four kids and they’re great kids. We both smile because it’s become kind of an inside joke. WE DO HAVE GREAT KIDS! They have been so loving, supportive, and mature through all of this and I can’t imagine trying to get through it without them.

Most of all, I am grateful to my wife, who is also being very loving, supportive, and mature throughout all we are going through. While I know that the treatment will be hard on me, it’s not hard to imagine that in many ways, it will be harder on her. She will be the caregiver with everything that implies. She will have to watch me go through whatever it is I have to go through. I am glad to know that she will also have friends and family she will be able to turn to for love and support herself.

But most of all, I am grateful to my God, without whom I know I could not come close to getting through this. Lord, I know that you did not want or cause this to happen to me, and I know that you have brought, are bringing, and will continue to bring countless good things out of this situation. This is truly the miracle. I also know that to the extent that I can put my hand in yours and trust and follow you as a child does his parent, I will be able to get through anything with equanimity. If I appear strong, I know it is you that are the source of that strength. If others have figured out how to love me despite the obstacles I put in the way, I know that it is because they have figured out how to be vessels for your love. For all of these things and more, I thank you.

Bone Marrow Transplant Info

2004-07-09T14:15:00.000-04:00

If you haven’t been there already (this is the same link as in the Introduction post) and are interested in a good primer on bone marrow transplants (BMTs), there is a book called Bone Marrow Transplants: A Book of Basics For Patients which is written by a lay person and the first chapter called "The Nuts and Bolts of Bone Marrow Transplants" is accessible online.

If you don’t want to wade through that much information, I will briefly explain BMTs as best I can. First a donor must be found. If one cannot donate their own marrow (autologous transplant), and I cannot because my marrow is diseased, then a matched sibling (allogeneic transplant) is the top choice. Finding a match involves doing a matching called HLA typing, which is done by drawing blood from the recipient and potential donors and then trying to match on all 10 antigens that they look for. There is a 25 to 35 percent chance that each sibling can match on all 10 antigens, meaning that since I have 5 siblings, the chances of finding at least one perfect match is around 75 to 90 percent.

There are some 200+ antigens that they don’t match and often don’t even know what they do and this is a big reason why they like sibling donors more than a MUD (matched unrelated donor), i.e. the other antigens are also more likely to match. However, if there isn’t a perfect match among siblings, they sometimes do a transplant with a one antigen mismatch, but may also go to the national bone marrow transplant registry which contains about 5 million potential donors. The donor then goes through more extensive testing.

Harvest from a donor is done in essentially one of the two following ways:

1. In a bone marrow harvest, a large needle is used to extract bone marrow from the top rear of the pelvis in several places and usually under a general anesthesia. There may be a little soreness for a day or two and the total marrow taken is about 2% of the total which the body replaces in four weeks.

2. A peripheral blood stem cell harvest which involves daily injections of a drug called neupogen for 4 days starting on a Thursday, followed by a harvest from the blood on Monday using a procedure not unlike the one I did for platelet donation where blood is drawn from one arm, processed by a machine that extracts the stem cells, and then replacing the blood in the other arm. The neupogen causes the donor’s bone marrow to produce so many white blood cells (20 times as much as normal?), that they and stem cells are forced into the blood stream. The marrow returns to its normal production rate when the drug is gone and the side effects can include achiness and maybe even a slight fever, but only for a day or two. The drug has been around for 15+ years and there seems to be no short or long term risk.

After a donor is found, the transplant recipient is “conditioned” for 6 days with chemotherapy and/or radiation to kill off essentially all of the bone marrow in the case of a full transplant, or much of the marrow in the case of a “mini” transplant. Since there is no marrow to produce all the blood parts, transfusions are required, and the donated marrow or stem cells are also implanted intravenously. The cells circulate and when they get to where the bone marrow belongs, they recognize that that is where they are to implant and do so. It then takes 2 or 3 weeks to see if the transplanted cells start producing blood parts.

Getting someone’s marrow (or stem cells, actually) means I wind up with someone else’s entire immune system. This is why the Graft Vs Host Disease (GVHD) is so common and serious, because the job of the immune system is to reject anything that doesn’t belong to it and in this case, nothing in the host will look like it belongs. To prevent the grafted marrow from rejecting the host, drugs are used to suppress immune system. This results in the patient being very susceptible to infections and diseases of all kinds, and for this reason, the 4 to 6 weeks in the hospital are in isolation in a special “clean” room where all visitors are required to wear masks and maybe gloves and other protective coating. Since the GVHD can be a problem for years, even when the patient goes home, precautions must be taken to try to prevent infection, including a mask and gloves when out in public. They say to expect to miss a year of work, although that can be longer or shorter. Working from home will be a possibility.

Other things we found out along the way:

• Dr. P at HUP would probably use stem cells from bone marrow instead of from circulating blood and so would require a bone marrow harvest instead of a stem cell harvest from the blood. Dr. T at T/FCCC would probably use stem cells from the peripheral blood. While there are some indications that the latter can include a higher incidence of chronic GVHD, Dr. T feels there are advantages that outweigh that risk, and Dr. P says it’s a minor detail and that higher risk of chronic GVHD may not be all bad.

• Dr. T would do a “mini” bone marrow transplant (bone marrow transplant or BMT is a term that seems universally to include stem cell transplants). He says that recent studies have shown it to be just as effective with fewer and less severe side effects because of the reduced level of chemotherapy. A mini BMT means they don’t kill all of the bone marrow, but leave some bad cells to be cleaned up by the transplanted immune system.

• More GVHD may not be all bad because it means the immune system is doing its job in fighting foreign entities. If it weren’t doing that well, it also wouldn’t be as effective in getting rid of the diseased marrow. In fact, I saw some statistics that show that if the donor is an identical twin (syngeneic transplant) where the marrow and stem cells are essentially identical, the incidence of recurrence of the disease can be 3 times higher than with a matched allogeneic transplant.

• There are not a lot of restrictions for visitations in the hospital. They don’t want overnight stays or sick people, but that’s about it.

• Dr. T is concerned about my pilonidal cyst and thinks it should be excised before a BMT, but I don’t think he realized how extensive the surgery is and that the recovery could be 6 weeks or more. I’m not sure I can afford that kind of delay. He will consult with my hematologist and pilonidal surgeon about that.

• Dr. T also thinks that the scaling on my ears is a fungal infection and he wants me to see a dermatologist about getting it treated before the BMT.

• Males receiving female stem cells seem to have more problems than others, but I don’t know if that will affect my sister’s candidacy

• The transplant recipient ends up with the unsuspecting donor’s DNA, at least in the blood and maybe other bodily fluids. This means I could wreak criminal havoc with impunity because the DNA is not mine.

The Transplant Becomes a Bit More Urgent

2004-07-08T14:39:00.000-04:00

So, on June 10, everything had changed. It looked like a bone marrow transplant was going to be needed in the following 6 months or so. My hemoglobin count fell below 10 for the first time (it went from 11.1 on 6/1 to 9.8 on 6/10), my WBC was at .9, and my platelet count had actually risen to 60 from 38. Two weeks later, on June 24, I had another CBC and the counts had all dropped to their lowest ever – WBC at .8, platelets at 30, and hemoglobin at 9.5.

My hematologist, Dr. H was clearly a bit alarmed at the apparent acceleration in the decline of the blood counts, and said he would like to push or prepone (it’s an actual word meaning to schedule for an earlier time as opposed to postpone) my transplant to happen by the end of July. This was hard to hear at first. While I knew a bone marrow transplant was in the near future, facing it in only weeks made it a lot more real. After chewing on it for a while, I realized that sooner was better than later for a lot of reasons. First, there’s less waiting. Also, for my wife who teaches fourth grade and my son who’s planning to go into the Peace Corps in January, an earlier transplant means that by the time school starts and certainly by January, I should be home from the hospital and we’ll have some idea of how well the transplant took.

Dr. H said there are two places in the Philadelphia area where bone marrow transplants are done – at the Hospital of the University of Pennsylvania (HUP) in downtown Philadelphia and at the Temple – Fox Chase Cancer Center (FCCC) in Northeast Philadelphia. He says he has worked with both places and they are both good. I decided that I wanted to visit and have initial consultations with both places so I could make a choice based on something, so I set up appointments for the following Monday and Tuesday (6/28 and 29).

Myelodysplastic Syndrome (MDS) is a disease of older people. Most people are over 70 years old when they contract the disease and approximately 90% of those who get the disease are 60 or older. This is significant because the only treatment known that can cure it is a bone marrow transplant and these are rarely done in people over 55 years old. I am 52 years old, so I’m still a candidate.

I wondered whether my disease is considered cancer since I have a malignant growth of cells, and if it is not cancer, why is it not. Dr. H explained that cancer involves tumors of some sort. Leukemia is not a cancer. It has something to do with body parts that constantly renew themselves (like blood) and those that don’t (like lungs, bones, breasts, prostates, etc.). By definition, I don’t have leukemia because the blasts in the marrow have to be 15% to be leukemia, and mine are at 5%. However, it’s just a definition – my blasts would increase over time to be 15% and then I would have developed an Acute Myeloid Leukemia (AML) that is very difficult to treat.

While concerned about my blood counts, Dr. H is positive about the BMT. He says I’m young and otherwise healthy (some people with MDS have had chronic infections, illnesses, and transfusions that have already wracked their bodies by the time they submit to a BMT), and that with a matched allogeneic (from a sibling) transplant, which we expect to get, the odds are good. Understand that by good he means greater than 50%, which is certainly not great, but it’s good enough for me. I feel like with a positive approach, good medical team, and the love and prayers of family and friends, it’s in the bag.

A Brief History

2004-07-06T17:09:00.000-04:00

For years, I had been doing platelet pheresis donations. This started when we lived in Delaware and for more 3 years, I did about 5 donations a year at the Blood Bank of Delaware. After moving to the Philadelphia area, it took me a while to get set up to do donations at the Red Cross here. In November of 2000, I did my second or third platelet donation at the Red Cross, after which they told me I couldn't do any more donations until I had gotten my counts checked which I did right away.

For the next 6 months or so, I tried to get information from the Red Cross about what my problem was until they finally said I should go see my doctor. I went to my primary care physician and he said I did have a low platelet count and I should see a hematologist. I finally got to my hematologist (I’ll call him Dr. H) in July of 2001 at which time my hemoglobin (part of the red cell count) was 12.8 which was low normal, my white blood count (WBC) was 1.7 thousand (should be in the range of 4.5 to 10.5), and my platelet count was 103 thousand (should be in the range of 200 to 450).

After that, I saw Dr. H every 4 to 6 weeks for a complete blood count (CBC). My hemoglobin was pretty steady, declining slightly until December of 2003, when it was at 11.9. In that same period, my WBC and platelet count declined steadily, reaching 1.0 and 52 respectively. Between December of 2003 and May of 2004, the counts were at 10.5 (hemoglobin), 1.0 (WBC), and 37 (platelet). During this entire time, I felt fine and was completely symptom free. Dr. H was clearly most concerned about my white blood count because the white blood cells are the ones that fight disease and infection. He told me if I ever had a fever of 100.5 or higher, I should call and maybe get admitted to a hospital because the white blood cells could easily get overwhelmed. For 3 years, I never had to call and had only 2 brief treatments to see if they had any effect (folic acid and vitamin B-12).

He also did a bone marrow biopsy and aspiration in July of 2001 and every summer after that. From the first 3, Dr. H could make no definitive diagnosis, and said his best guess was that I was developing a Myelodysplastic Syndrome (MDS). He also indicated that it was possible that I would spontaneously remit.

In May of 2004, things changed. On May 27, I had my fourth bone marrow biopsy and since the results take 2 or 3 weeks to come in, I set up an appointment with my hematologist to follow up on June 24 (my wife and I were vacationing at the Jersey shore during the week of June 12 – 19). On Memorial Day, May 31, I felt pretty bad and at 11:30 PM, I found I had a fever of 101.5, so I called the hematologist’s office. When the doctor on call discovered that I had no other symptoms than a fever (like coughing, etc.), she said I didn’t need to come in, which was a relief to me.

The next day (Tuesday), I called Dr. H and told him about the fever (it had subsided a bit by morning) and that I was quite sore in my coccyx area. I didn’t think it was from the bone marrow biopsy (which was also in that area) because I could see the puncture and it looked fine. My best guess was that I was bruised following a fall while cleaning up after a wedding. He saw me that day and said he thought I might have an infected pilonidal cyst, so he put me on an antibiotic, sent me to a surgeon, and set me up for another appointment on June 10. On Wednesday, I saw the surgeon who confirmed that I had an infected pilonidal cyst and he drained it, leaving the cyst there. If you want to know a bit more about pilonidal cysts (and be warned, you may not), click on this link for pilonidal cyst .

On Thursday, June 10, I went back to Dr. H, thinking I was getting another CBC (complete blood count) and a check on my infection. What I didn’t expect and got was the results of my bone marrow biopsy which showed that I definitely had MDS and that my blood counts were falling fairly quickly. He told me that I needed a bone marrow transplant in the near future. While I knew somewhere inside that I might get this news, it still hit me pretty hard because I knew that while the bone marrow transplant was my best option, it is a very risky procedure.

Here ends the brief history. I will follow with more details and more recent history in subsequent posts.