Fifth Anniversary

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

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

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

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

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

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

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