Day 28

Same song, different verse.

It's Friday, but half the time I can't keep up with what day it is. They just all run together. If I can figure out the date, though, I know what day, post transplant, it is. I had the transplant on September 1, so I just take the date minus one and get the post transplant day. Isn't math wonderful? In October I'll just add the date plus 30 (the number of days in September) and then take 1 away.

I'm here now in ATC getting my phoscarnet, magnesium sulfate, and immunoglobulin. The immunoglobulin is infused weekly on Friday's. The other stuff is daily.

I did get the day "off" yesterday. That only means that I didn't have to do bloodwork and I got the phoscarnet and magnesium via a pump that they hooked up in my room instead of having to sit/lay in a hospital bed for 4+ hours. I might get the weekend off, too.

They begin to give you a few days off after about 2 weeks of seeing you daily in the ATC. Once they see a stable pattern, they give you a few days off each week. But, again, "off" just means you get the infusions via pump on your own.

The counts are about the same. The white count continues to be a yo-yo, going up and down based upon the Neupogen shots. I just got another Neupogen shot just a minute ago, between paragraphs 2 and 3.

The red counts bounce a little bit within a fairly narrow range. They were actually down a little bit this morning as was the platelet count. But they should go back up over the next few days.

I found out this morning that the white counts may take a little longer to stabilize because I got Campath as one of the pre-transplant drugs. Campath is actually a monoclonal antibody, like Rituxan. Rituxan targets cells with the CD20 protein on the surface of the cells. Campath targets cells which have the CD52 protein. It's a little broader in effect because more cells have CD52 on them than CD20. Some healthy cells, in addition to diseased cells, have CD52 on them, so Campath kills some healthy as well as diseased cells.

Campath has worked well killing CLL cells in studies and has worked somewhat effectively on me in the past as well. Apparently Campath also inhibits GvHD, graft versus host disease. So the benefits are there. It will just take a little longer for the white count to stabilize and grow on it's own.

Michael, the PharmD, was telling me about these additional effects of Campath this morning. PharmD is short for pharmacy department. It's pronounced "farm D." Medicine has it's own lingo like this. Michael appears to stay in ATC all day. Amber was the PharmD on G11, the transplant floor in the hospital. She was quite a bit cuter than Michael. Amber is a Virginia Tech grad and Michael is a North Carolina grad. Small world. I'm trusting that they will take care of their ACC kin.

In addition to the PharmD, there is the APN, the advanced practice nurse. Then there is the floor nurse, which can vary day to day. And there is the doctor. Dr. Khouri is the doctor here. He is my main doctor in the BMT department. Together, they comprise "the team." Each patient has a "team" that keeps track of him. On G11, the team there had different members, of course. The doctor varied also, depending on who had "rounds" that week. They also had a few more folks on the team, like an extra doctor or two (maybe trainees) and an extra nurse or two. On G11 they would knock briefly and come into the room virtually unanounced. They caught me in my skivvies a time or two. There is no modesty in a hospital.

In the hospital the team was all female for a couple of weeks. Dr. Sphall wanted to hear the Tech fight song, to which I obliged. I unwittingly volunteered that there some "off color" versions of the fight song, too. After that, they were more interested in the off color versions than the real thing and insisted for several days that I sing the other versions. Being a gentleman, not to mention older and a little wiser than in years past, I steadfastly refused to sing the off color versions to all these women. This despite the fact that they threatened to drug me with additional Benadryl to make me comply.

Well the IV bags are getting closer to empty and so is my mind, so I'm off to read the sports page.

Day 24

Not much new here. White counts are coming down as the effect of the Neupogen wears off, but they're still high enough for now. Reds are up a little today.

I'm sitting here in the hospital bed in the ATC getting my bags of magnesium sulfate and phoscarnet. I have about 2 more hours to go. Room service just came by and took my order for lunch.

Towards the end of the week they will give me a day "off." That just means that they send me out with a pump and a loose bag of magnesium to hook up myself rather than having to come in here and lay around for 4 hours. It will still be a break, though.

Dr. Khouri came by this morning. He was out Friday when he normally makes his rounds. He asked me all the usual questions about how I feel. I told him everything was fine.

Next Monday morning I get a full CT scan and bone marrow aspiration (affectionately known around here as a BMA) . From these they will get the first really good look at how the new cells are affecting the CLL.

To do the CT scan, they fill you full of barium, which tastes like chalk. You have to drink 3 BIG styrofoam cups of this stuff on an empty stomach. Umm, umm, umm, barium for breakfast. They flavor it to make it taste even worse. They save a fourth cupful for insertion in other ways. They then run you through a big machine shaped like a giant doughnut to take pictures of your internal regions. The scan will show enlarged, or not, lymph nodes in the chest and abdomen.

The bone marrow aspiration (BMA) is where they insert a long needle into your hip bone and draw out some bone marrow. Fortunately, they do deaden the area with a little Zylocain. Bone marrow looks just about like blood, by the way. The BMA will show the concentration of lymphocytes in the marrow. A normal level is about 8 to 20%. They will also see how many of those lymphocytes in the marrow are still affected by the CLL. There is likely to be some disease still showing since it will have been only 30 days since the transplant. I'll repeat the CT scan and BMA along with a PET scan before I leave in a couple of months.

I've visited the fitness center at the hotel each of the last several days. They have a fair amount of equipment and a few weights. You have to work at keeping your energy level up. You lay around here so much getting infustions that it's real easy to lose energy if you don't work at it.

Well, that's about it from sunny southeast Texas. 76 more days to go.

Day 22

It looks like we have settled into a routine after getting out of the hospital. Every day I go to the 2nd floor blood lab early in the morning for them to draw blood for testing. They draw 3 to 5 vials of blood every day. I then go to the ATC (ambulatory treatment center) on the 10th floor. They also have 3 ATC centers on the 2nd floor, but the 10th floor center is primarily just for BMT patients.

At the ATC they hook me up to an IV and give me magnesium sulfate and phoscarnet, which is an anti viral medicine. Every Friday I also get immunoglobulin. This process takes about 4 or 5 hours, so I get out between 1 and 2 every afternoon depending on when they get me in there to start. This is a 7 day a week event for the first 2 weeks or so.

After the first 2 weeks they begin to transition you to oral medications, especially the magnesium. The anti rejection medication strips the magnesium out of you so they have to put it back in. After next week I should be on a 3 day a week schedule. The only problem with the magnesium sulfate pills is that they mess up your stomach a little.

The red blood counts continue to be pretty stable and trending up. The white counts are like a yo-yo. They were way down this morning to 1.1, so I got another Neupogen shot this morning to boost them back up. This is pretty normal, though.

So, medically, things are a little boring right now. But that's exactly the way I want them. If you are not boring to the medical staff then you have problems. And I don't want problems, so boring is good. My goal is to be the most boring patient they have.

Day 19

It's 10:45 and I've been in the ATC for about an hour. I'm getting magnesium and phoscarnet. Magnesium is necessary for the bone marrow to function. It's low because the Tacrolimus, the anti rejection drug strips magnesium out. So you take it out and put it back in. Phoscarnet is an anti viral drug. This process will take about 3 hours today.

The T cells, which fight viruses, apparently need a little help at this point, so they keep up the anti viral drugs.

The B cells, which fight infections, are doing okay. So I'm not on any antibiotics. The white count zoomed up today courtesy of the Neupogen shot yesterday. White count was 17.4 today and neutrophils were 16.3. Yesterday the overall white count was 2.4 and the neutrophils were at 1.49. I think it's encouraging that just a single shot had that much effect. The overall white count looked like it might have bottomed out yesterday having come up to 2.4 from 2.3 the previous day. But they gave me Neupogen because the neutrophils dropped below 1.5 (just barely) and I was getting out of the protected environment.

I will come to the ATC (ambulatory treatment center) every day for two weeks after getting my blood drawn. Depending on what the blood work reveals, they will give me various drugs. After 2 weeks they will probably cut me back to 3 times per week.

Ken and I went out to eat yesterday evening at our favorite restaurant in the Rice (University) Village area. We went early to avoid crowds, though. It felt quite odd to go from a clean room protected environment in the morning to being out in public in the afternoon. The docs said it was okay as long I wear a mask, wash my hands a lot, and avoid crowds.

Pete, thanks for the help with the blog. Good luck getting Gary up to speed. LOL

Tech (in retro uniforms) plays UVA on ESPN Thursday night.

I Got Out !!

Yep, they finally let me go about noon. I was packed and ready and standing at the door when the doctor came in. I made four laps around the floor before breakfast to tell everyone bye. The vast majority of the nurses and assistants were very caring, supportive, and informative. What a great staff. They made the stay as pleasant as possible. And I'll actually miss them.

Ken and I got checked in at the Rotary House Hotel about 2:30 since the room wasn't ready at noon. That gave us time to get lunch and fill prescriptions. M. D. has two full pharmacies just for M. D. patients.

I have to be babysat 24 hours a day until I get to come home. Ken is taking the first tour of duty. They want 24 hour babysitting due to the possiblility of severe GvHD (Graft vs. Host Disease). If I get an attack during the night someone has to get me to the emergency center across the street. At this point they are most worried about an attack on the GI track which could dehydrate me and make me pass out. I don't expect any problems since I have had few up to this point. But the BMT staff are very cautious. I'm hoping after a month or so of no problems they will relax the 24 hour babysitting requirement. I haven't tried to negotiate with them -- yet.

It felt quite strange going from an isolated environment to being able to get out. We ate at the restaurant in the hotel for lunch. I felt almost paranoid.

I do have to wear a mask when I'm out in public. That's a pain but a necessary evil. My immune system is the equivalent of that of an 18 day old baby. So I have to take the same precautions for myself as one would for a new born.

The overall white count was up nominally this morning, which is a very good sign because it didn't continue to drop. The neutrophil count was down, though, so I got a Neupogen shot in the belly. The red counts were down a fair amount, but the platelets were up. So all in all this was a pretty good day.

Day 17

It still looks like I will be paroled tomorrow. I should be moving out to the Rotary House hotel across the street about noon tomorrow.

Not surprisingly, the white counts slipped a little more, but the rate of descent is slowing. They may give me another Neupogen shot tomorrow before I get out. But that depends on what the counts look like early in the morning.

The reds continue to inch up slowly, so that's good. And the platelets look pretty good at 154 today, which actually is in the normal range, although barely.

Cathy asked in the comments how I keep up with all this data. They give me a printout every morning showing all the gory details. The printout is a full sheet with single spaced data from top to bottom of the page. I always get one from the local oncologist at home, too. Here they graph the various parameters for me, too, which saves me the effort of having to do it on the computer. With the graphs, I can easily see the trend in the white count, hemoglobin, platelets, etc.

I was first diagnosed with CLL in February, 2004 and I've been undergoing chemotherapy since November of that year. So with all the trips to M. D. Anderson, the local oncologist, labs, etc. I have acquired some understanding of what some of this stuff means. They still throw me a curve every so often. But I'm not bashful, so I ask plenty of questions. You would be surprised at the different answers you get from various medical people when they are asked the same question. So you quiz everybody until you get the same definition or story. Lynda has been very active with online research since those early days in 2004, too. With her medical background, the research, and the OJT, we have pieced together a fair understanding of CLL, the various treatments, and likely outcomes.

We have found that doctors and nurses are only human and can and will make mistakes. The one thing that amazes me most about medical care is how much the patient has to "steer the boat." If you are not knowledgable about your disease and interested in your treatment, the results may not be to your liking. You simply cannot blindly leave everything up to the doctors and nurses. You have to ask questions and demand logical answers. If your doctor is offended by this then get a new doctor. It's time that doctors consider their patients as customers. Don't settle for second rate medical care. You have to be in charge of your future.

Day 16

The white count slipped a little bit more, but the rate of descent is slowing. The count this morning was 3.1, down from 4.3 yesterday. Neutrophil count was 1.86.

Reds continue to move up. Platelets were up nicely to 142. Hemoglobin was 10.9. Not bad.

I'm still on track to get out on Tuesday. I'll get out about noon. Then on Wednesday morning I'll go to one of the blood labs at 7:00 to get blood drawn and then on to the ATC (BMT ambulatory treatment center) on the 10th floor for infusions of whatever the blood work dictates that I need.

We're having scattered thundershowers here today, so I guess I will stay in most of the day. LOL

Wrapping Up Day 15

After two days without Neupogen the white counts have slipped, as expected. They were down to 8.3 yesterday and 4.3 today. The normal range is 4.0 to 11.0. The neutrophils were down to 7.06 yesterday and 3.35 today. Neutrophils are the part of the white count that directly fight infections. For the neutrophils, anything above 2.0 is good and anything above 0.5 you can get by with. They will be watching for the point where the white count levels out before heading back up. Regardless if it has stopped falling or not, it should not keep me from being discharged on Tuesday. If the counts fall below acceptable levels they will start the Neupogen shots back up for a day or two.

I was in Benadryl la-la land again much of the day. Once a week they give me IVIG, IV immunoglobulin, to boost the immune system. Today was the day. They pre medicated me with hydrocortison and Benadryl. Benadryl usually makes me loopy for 4 to 6 hours. It pretty much lasted the whole 6 hours today. I walked a mile early this morning and 2 miles this evening before the ball games. My brother came by to visit about mid afternoon. Nothing medically special is scheduled for tomorrow.

They changed out the triple lumen line in my chest to a double line yesterday in preparation for being discharged from the hospital on Tuesday. Apparently they won't need but two lines after I get out, plus I won't have to maintain the extra line. The triple line is actually just one line with three continuous holes or tubes in it. The double line is one line with two continuous holes in it. To change the line out, they run a wire down one of the tubes into the vein to hold the place in the chest cavity and the vein. They then pull the triple line out over the wire, leaving the wire in place. They then thread a double line over the wire into the vein just above the heart. Then they pull the wire out. The line is held in place by a little plastic piece with two "wings" on it. The wings of the plastic piece are sutured to my chest. They have to change the plastic piece when they change the line out as well. They gave me a local anesthetic to make this process a little easier. I had the whole thing put in with just a local anathestic a few weeks ago. About half the patients choose to be knocked out and half do it with a local.

Well, that's about it for today. We are just waiting out the next two days to let the new system have a little more time while I'm in a clean environment.

Oh, speaking of the new system, I will have a new blood type when all this is over. I wondered about that since the whole system is being replaced. But it's true, I will end up with the donor's blood type. Right now I have two blood types since some remnants of the old system are still in place. As the new system finishes off the old system, I will have just one blood type. Also, all the childhood vaccinations will have to be repeated in about 6 months since all the old system will be destroyed. It's all logical, but a little curious still.

Day +13

The white count was up big again today. White count was 8.8, up from 2.7 yesterday. Hemoglobin was 10.2, down from 11.0 yesterday. Hematocrit was down a little to 29.3. Platelets were up to 102 from 99 yesterday. All pretty good numbers. Certainly the white count looks great.

They are going to let me out of the hospital on Tuesday, maybe even Monday. I'll move into the hotel across the street called the Rotary House. It is owned by MDA, sponsored by Rotary International, and run by Marriott. We have stayed there many times. It is very nice and connected via skybridge with the MDA main building. It's very convenient.

I go to discharge class this afternoon to learn what to do as an outpatient. I do know that I'll have to come to the ATC (Ambulatory Treatment Center) on the 10th floor for treatment as an outpatient after I get out of the hospital. My days of being hooked up to the IV are far from over, but at least I won't be hooked up 24 hours a day. At the ATC they administer whatever my body needs to keep the transplant going smoothly. Typical stuff would be magnesium, electrolytes, antibiotics, saline fluid, etc. They keep very close watch over you even as an outpatient. I'll probably spend several hours there every day for the first two or three weeks. Then they typically cut back to just three days a week.

I'm getting my last bag of Rituxan right now. It's a 2 liter bag and will take several hours to complete. I had Benadryl in the IV to start which induced a little nap, but it doesn't seem to be knocking me completely out like it usually does.

Houston, We Have Engraftment

Wow! Great counts this morning. White count was a whopping 2.7, up from 0.6 yesterday. Reds were up 10% and platelets up 50%. Can't ask for much more than that. I believe the stem cells have indeed engrafted.

Engraftment is where the stem cells find their way to the bone marrow and "make a home." Stem cells don't normally float around in the blood stream in any significant concentration. They belong in the marrow. In fact, the donor had to have a few days of Neupogen himself to stimulate the stem cells to leave the marrow and flow into his blood stream in order to be harvested. I got about 6 to 10 million of his stem cells I figure. The minimum needed is about 4 million. It's a little amazing that they come in one little freezer size plastic bag, heavy duty medical grade, or course. I have seen a few bags being delivered around here. They are literally in a little Igloo type cooler all taped up and tagged.

Dr. Shpall came in this morning and asked "How's my favorite engineer?" I told her great, especially with those counts. They took a quick look at me and said I was back to being their text book, boring patient. The young Virginia Tech pharmacist lady confided later that the fever was very "text book" and seems to be a precursor to cell engraftment, although they still have to treat it, to be safe, as though it's an infection.

They wanted me to have one more shot of Neupogen. I got it about an hour ago and haven't had any side affects yet. Go figure.

All in all this was a very good day. I got a good CBC (complete blood count), got a visit from Terry Irvin, my BMT bud from Pennsylvania, and made a few laps around the floor. I think Kenny, my brother, is going to visit this evening as he has almost every day. Leno is on tonight. Ahhh, the life.

Now that the cells have engrafted, they will be looking for GvHD, Graft versus Host Disease. With any transplant there are rejection issues. It this case, though, it's not a case of the body rejecting the new cells. It's that the new cells are growing someone else's immune system inside me, so I'm the foreign body, literally. Without the anti rejection drugs, the new immune system will try to kill various essential parts of me. The usual early symptoms include mouth lesions and/or rashes on the chest and back. It can be far worse, but that's what the Tacrolimus is for. Tacrolimus is the anti rejection drug they have been pumping in me since Day Minus 2.

The doctors actually want a little GvHD because it's evidence that the new system is indeed looking for foreign bodies to kill. Through the use of various drugs, the doctors limit those targeted foreign bodies to the leukemia and other disease. It seems my old immune system got a little chummy with the CLL, thought it was suppose to be there, and refused to kill it off. Hence, the need for a new immune system.

Terry Irvin said this morning that they had lowered his "Tac" level to induce a little GvHD and sure enough he had a rash on his chest, belly, and head. I'm not sure how long they will let those side affects run. GvHD is possible to get years after a transplant, so we will be on the lookout for rashes in the foreseeable future.

On the other end of the floor there is a "rogues gallery" of quite a number of BMT survivors. Their pictures are posted along with their year of transplant, occupations, hobbies, and best advice. One lady advised "Take life day by day. And if you can't do that, then take it moment by moment." Good advice for many of us, I suspect.

Ciao.

Day +11 Is Just About History

I am enjoying the comments! Thanks for all of them.

Well the white count came up today to 0.6. That's enough of a move to notice. I expect them to be about 1.2 tomorrow. They apparently really take off when they start to move.

The platelets were up for the third day in a row to a whopping 66. I'll take it.

The red counts are still trending lower. Hemoglobin was down to 10.0. Hematocrit was down to 28.3. One of the nurses told me that the hemoglobin is about the last to bottom out, while platelets are usually the first.

Today was the 5th day of Neupogen. Yesterday I had an awful lower back ache. I thought that three days of laying around in bed with a fever did it. But it occured to me that it might be white cell growth. Bone pain is a common side effect of Neupogen, although I've never had any pain before. The doctor confirmed this morning that the Neupogen was pushing out the white cells and causing the pain. The two main reservoirs of bone marrow in our bodies are the hip and the sternum. So that is why the pain was in the hip and lower back area. Now today it hurt all over, especially in the knees, hips, and chest (sternum). In fact it hurt a lot. I reluctantly agreed to take a Darvon (sp?) last night. Well, this afternoon I asked for and got two. And I just asked for two more for 11:00. No time to be proud. (Please, sir, may I have another.) I could hardly walk around the room about 30 minutes after the Neupogen shot.

Tomorrow is another day. Go white cells!

Day +10

Time flies when you're having fun. Uh ........ yeah.

The fever was better today. In fact it was gone much of the morning. It's back up a little this evening. I felt well enough this morning to do 5 laps, but I haven't done much since then. I've been a real couch potato. It should be better tomorrow, the third day of antibiotics.

The doctor said this was pretty normal. When your white counts are this low for this long you can't help but get something. I told her I wanted to get back to being her text book boring patient.

This doctor, Dr. Shpall, is a she. She has kids and one wants to be an engineer. So she heard me going on about the Tech/ND game and asked about Tech and Atlanta. She asked if I knew the fight song and I told her I could sing it in my sleep. The next day she made me sing it. Keep in mind it wasn't just her there, but her entourage of 5 other women were there, too. I was a little embarassed but I didn't miss a word. Too bad there was a Virginia Tech grad and a Maryland grad in the entourage.

Trivia question. What school has all of its engineering programs ranked in the top 10 in the country? You guessed it -- Tech. Thanks to oldest daughter Laura, a UGA grad, for finding that fact. Laura could sing the Tech fight song at age 4 and went to most of the home games with me between age 4 and 18.

It's time for a couple of laps before bedtime. Not that "bedtime" counts for anything in the hospital. They wake you up constantly for something, or you have to go to the bathroom because they are pumping bag after bag of fluids in you.

The white count this morning, by the way, was 0.2, still pretty much nothing. The good news is that the platelet count was up for the 2nd day in a row, and the hemoglobin is trying to stabilize around 10.4. So we'll see what the whites look like tomorrow.

Rough Couple of Days

I started running a fever yesterday morning. I've had some congestion since last week. Maybe it turned into something. They ran a "nasal wash" test last week and found out I have infuenza A. They weren't concerned about the influenza, saying that it would go away when my white counts come up.

But with a fever, things changed. So I've been on antibiotics since yesterday afternoon. I am feeling a lot better tonight. To give you antibiotics they just hang a bag of antibiotics on the IV tree and connect the line into one of the existing "y" fittings. No fuss, no muss, no bother.

They started me on Neupogen on Friday. Neupogen is a growth stimulating factor used to boost the white count in people on chemotherapy. It's administered by needle. Actually I give it to myself in the belly. I've used Neupogen quite a few times over the last couple of years. The first time I gave myself a shot a couple of years ago I was shaking like a leaf. Lynda was laughing it was so comical. But it's like sticking a short needle in a ripe peach. Not much to it.

The Neupogen is on the protocol starting Day 7 which was Friday. I'll get it everyday until the white counts come up to 3.0. The count was 0.1 this morning. After the whites come up and they stop the Neupogen, the white count will fall again. The idea is for the counts to fall somewhat then recover and grow on their own. That process will take about another week or so.

I did get a wheelchair ride down to the 3d floor last night for a chest xray. That was fun. I'll do about anything to get off of this floor. Ha

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Day 7

The white count is still down close to zero, so no bounce today.

I started to write about the Texas Medical Center last night and got tired. But M. D. Anderson is in an area of Houston a few miles south of downtown called the Texas Medical Center. This area is probably 15 maybe 20 city blocks in size. In addition to the numerous M. D. Anderson buildings there are many other hospitals, labs, clinics, doctors' buildings, and medical schools. All buildings are multi-story mid to high rise buildings. Atlanta has nothing to compare. "Pill Hill" in Atlanta, the area made up by Northside, St. Joseph's, & Scottish Rite Hospitals plus numerous low rise doctors' buildings, looks like a high school campus in comparison to the Texas Medical Center. As often said, "Everything is bigger in Texas." It certainly applies to medicine here.

This area seems to be a magnet for the top medical talent in the world. For instance, my leukemia doctor here, Michael Keating, is easily in the top three CLL experts in the world. He would probably be insulted by my not calling him the top, but I'm trying to be realistic. He is not arrogant, though. He is from Australia and has a little accent to prove it. He has said he would like to live in Australia, but his work is here. We call him the "Jolly Old Elf" because he is outwardly friendly and hugs everybody and makes his nurses hug everybody, too. The nurses don't seem to enjoy it as much as he does, though. I've seen him go out into the waiting room, which is large too, and greet and hug everyone like he's running for governor. He also travels around the world comparing notes with other experts, especially in Germany and Spain. Other countries are not constrained by FDA regulations so they get to try new techniques more readily than we might in the U.S. So he trots the globe to keep with what's going on everywhere.

The bone marrow transplant doctors are just as competent. My doctor, Dr. Khouri, specializes in stem cell transplants in CLL patients. That's pretty specific. M. D. does about 700 bone marrow transplants a year, probably more than any other facility in the country. I've said that you might get just one good bite at this apple so you better go to the best place possible to maximize your chances. So my confidence level here is high.

Speaking of big buildings, this hospital makes a sizable footprint also. And it's just a 12 story wing of the main M.D. Anderson building. The distance around this floor is just a little shorter than a track around a football field. It takes 4 trips around the football field track to equal a mile and it takes 5 trips around this building to equal a mile. I checked that out the second day I was here. Being the engineer and golfer I am, I can pace off a yard easily and accurately. So I counted the paces around the floor. It took 398 paces to get around the floor. So if my stride was 3 feet then it was about 1200 feet around. There are 5,280 feet in a mile, so do the math and you get about 4 and a half laps to the mile. I probably took a few short strides to dodge people and stuff in the hallways, so I would round the 1200 feet down and say 5 laps is a mile. That is what the nurses told me on the first day. I had to keep them honest, though.

On this floor, which is dedicated to bone marrow transplants, there are 2 wings, east and west. In each wing there are 2 big nurses stations. So you have SE, NE, SW, and NW pods. Each pod has a nurses station with about a dozen nurses and assistants to attend to the 13 patient rooms. So there are 52 patient rooms in total. In addition to the patient rooms there are family lounges, visitor bathrooms, staff bathrooms, staff locker rooms, staff breakrooms, janitor closets, storage closets, admin offices, food service breakout rooms, a pharmacy satellite, holding rooms, conference rooms, etc. There are two elevator lobbies, one with 6 elevators for staff and services, and one with 8 elevators for patients and visitors. I'm sure I missed a few rooms, but my point is there is a lot on this floor. It takes me 5 minutes to make one lap going at a pretty quick pace.

Speaking of laps, I did 20 of them on Wednesday. I only did 10 yesterday because I was in Benadryl la-la land much of the day. I bet I'll do at least 3 miles today. Not much else to do really and the four walls close in on you if you stay in the room.

Saturday night will make 2 weeks that I've been here in the hospital. I hope I only have about a week left. Let's go white count!

Day 6 Is Over

The Rituxan infusion went fine today. It sure was a big bag, though. We started it at 9:00 this morning and didn't get done until almost 4:00 this afternoon. The Benadryl in the IV did the trick, so I slept through much of the day. I still got in some walking, though.

The white counts are still in the tank. But the red counts are hanging in there. The platelet count is trending downward and was at 47 this morning. 20 is the magic number for a transfusion. The hemoglobin is still pretty good at 11.1.

Apparently with a MUD (matched unrelated donor) it takes a little longer for the counts to come up. Related donor transplants are quicker. They draw blood every morning at 5:30, so by 8:00 the results are back. I keep hoping we'll see them bounce a little here any day.

Not much going on here. I do have a nice view out of my window. I can look out towards the southwest and see Reliant Stadium where the Texans (NFL) play. It has a retractable roof which is pretty cool. It has been open the last several days getting some sunshine on the grass. Just to the left of the new stadium is the old Astrodome. I'm not sure what they use it for but they didn't tear it down.

So much for Day 6.

Day 4 and All Is Well

Here it is the 4th day after the stem cell infusion and I feel great. Actually I have felt fine since the stem cell transplant infusion. I'm doing 3+ miles a day around the hospital floor. The nurses are beginning to laugh at me. I keep getting behind these slow pokes and have to pass them. One guy wanted to know what they are putting in my IV. LOL

I am attached 24 hours a day to an IV. They are constantly pumping in Tacrolimus, the anti-rejection drug, along with saline, potassium, magnesium, and various drugs as they see fit. There are 3 connections in my chest so they can pump in lots of stuff. Currently I have only 4 bags of stuff hanging on the IV tree and being infused. After 9 days of being tethered to this IV tree I'm getting tired of it. I call it my dance partner. And it will be there until I get out of the hospital. You have to eat, sleep, shower, brush your teeth, etc. with the thing. Showers are a real challenge because you have to keep the dressing over the CVC in the chest dry. Fortunately, the shower is a roll in with a hand held shower head.

My white blood count is almost zero courtesy of the chemotherapy. But the red counts are holding up still. The platelet count is trending down and was 69k this morning. Normal healthy levels are about 200k to 400k. Mine run 150 on a good day. They will give me a transfusion of platelets when they get around 20 probably. Platelets are the glue that keeps you from bleeding profusely. So you don't want to do without them. A bag of platelets looks sort of like a bag of wood glue only a little darker, so I guess the analogy works.

My hemoglobin is holding steady just above 11. Normal is 14 to 17. Hemoglobin is the part of the blood that carries oxygen to your muslces and tissues. As long as my hemoglobin is above 11 I have a pretty good level of energy. Below 10 and I start to drag, though. They will give me a transfusion of red blood when the level drops below 8. Hematocrit has been staying steady, too. That's the stuff that carries iron and nutrients to your body.

It's still early, but there is no sign of engraftment of the new stem cells yet. The first sign of that will be when the white count begins to rise. A buddy of mine who is about 3 weeks ahead of me in the stem cell transplant process here came by to see me this morning. He's been out of the hospital for 2 weeks now. His white count is 5,000. During chemotherapy over the last couple of years I struggled to keep mine above 1,000.

When the white count gets too high you have a problem. Normal is about 8,000 to 15,000. Mine was about 30,000 when I was first diagnosed and doubled in less than six months. That was just the diseased B cells not dying off as they would if they were healthy.

Well, it's about time for my next mile, so I'll close with that.

Thanks for visiting.

Post Transplant Days Now

Today is Day One.

The stem cells were delivered to the room around 10:30 last night and were being infused by 10:45. It took until just after 2 in the morning until they were all in.

The stem cells are infused through one of the IV lines hanging out of my chest. Last week they put in the central venous catheter in my right chest near my arm. The CVC has 3 lumens, or separate connections, so that 3 different things can be infused at the same time. The CVC is covered by a bandage which has to be kept dry, a trick in in its own right while trying to bathe.

During the stem cell infusion my blood pressure went way up and I had the "heavy chest" symptom as well. It felt like someone put a concrete block on my chest. So they had to slow the rate of infusion to keep the heart problems under control.

Then they gave me a diuretic to flush the extra fluid out so that it didn't try to collect in the lungs. So that made me go to the bathroom very frequently until about 4. Finally I got a couple of hours of sleep.

This morning I felt great and got up and did a couple of laps around the floor and then had breakfast of bacon and eggs. The rest of the day I've spent napping, walking around the floor , and watching football on tv. Can't wait for the Tech game tonight.

Today's The Day

Day Zero that is. I get the stem cells tonight at 10:00 central time.

I'm not sure why the time will be so late. I got word yesterday about 2:00 pm that the cells were successfully harvested from the donor, so that leaves about 32 hours for transportation and processing. I think the donor may be overseas. I had to sign a consent last week acknowledging that the donor is overseas or has lived overseas, so that was a pretty strong hint. That coupled with the time lag makes me think it will be a long trip for the stem cells. But that just makes this whole process that much more amazing.

Yesterday was a little rough. It started with nausea in the morning followed by a big dose of benadryl which made me very loopy all morning long. I also had a 7 hour infusion of Rituxan. I wasn't back to almost normal until mid afternoon.

This morning has started off much better. Just a little nausea. Breakfast tasted particularly good. I have the day "off" until tonight.

The infusion of the stem cells should go by quickly. They will start with a small dose of a steroid for a pre-med and follow up with a small dose of benadryl. The stem cell infusion itself will only take about 30 minutes I understand. There will be a doctor, a nurse practitioner, and the floor nurse there to watch over the process.