Day +11

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.