Today is Wednesday, August 27
I'm doing fine. I'm gradually increasing the intensity of my workouts. I'm in training for the "Muscular Dystrophy 150" bicycle ride on November 1st and 2nd. I did it in '95 when I was packed with Hodgkins disease (although I didn't know it at the time!). I figure that I can do it when I'm healthy. I'm up to riding about 12 miles a day. I know that I'll be ready when I can do 50 miles without resting. The ride goes from Phoenix AZ to Bullhead City AZ on the Colorado river. It's a blast, and its for a good cause.

Next Tuesday is my next checkup with the docs. I expect it to be pretty uneventful. There are no CT Scans involved, just a CBC. I'm sure my blood is in good shape since I've got good wind now.

Today is Wednesday, July 9, Day +30
Today is Day +30. I'm doing fine and getting stronger every day. My biggest problem is that by the end of everyday I'm exhausted. But even that's getting better. I saw the docs last week and all my blood counts where in the normal range (reds are still a little low at 11.5). They don't want to see me again until the end of August.

Today is Wednesday, June 25, Day +16
Days +3 to +6 where pretty tough. For me, the worst part was the mouth sores. I felt like somebody ran a lawnmower through my mouth. It was so painful that I was taking morphine to kill the pain. Eating was impossible, even drinking water was a challenge. Not a fun time

June 16, Day +7 was the MAGIC day. The nurses had to come wake me at 5:00am to inform me that my WBC went from 0 to 0.2. This was BIG news since it is big time risk of infection etc. without any WBCs. I had a hard time getting too excited since a number of 0.2 meant that there were probably only about 13 white cells in my entire body, and that wouldn't do much good against infection. The nurses assured me that the number is not what's impressive, but that fact that it has started moving up. This meant bone marrow engraftment was taking place - this is a GOOD thing.

June 17, Day +8 was even better. WBC 0.8. Big Time! By now I was starting to feel pretty good. Since I was getting my healing cells back all the mouth sores, stomach problems etc. started to disappear. By Day +8 I was in good shape. I asked the doc when was the soonest it would be before I go home. He laid out the "go home" criteria as follows: WBC of >4.0, off all antibiotics with no fever for 24 hours, and a healthy appetite. He said most people go home between Day+15 and Day+25. I told him I was shooting for Day +11. He gave me a funny look and said go for it. It's amazing how my appetite improved after that little discussion.

June 18, Day +9 WOW! WBC 3.2! My new Bone Marrow was going BERZERK! I was also eating like a horse. The hospital nurse dietician said that I was her Star Student. I was eating over 3,000 calories per day. I told her I needed to leave the hospital to go on a diet. Also, since I hadn't had any fevers for a few days, they disconected me from all anti-biotics. Could it be possible that I would leave the hospital at Day +10???

June 19, Day +10 WBC 6.5, no fevers for 24 hours, eating like a horse. Doc came in early in the morning and informed me he would be discharging me that morning. Day +10 would be the new world record for shorted BMT hostpital stay (at least for the Mayo Clinic in Scottsdale). I was ecstatic! I could finally get a good night sleep in my own bed.

As the nurses were preparing my discharge paperwork, she noticed that this day was the 1 year aniversary of being diagnosed with Hodgkin's. I was diagnosed in June 19, 1996 after a biopsy of some lymph nodes in my chest. The fact that I was leaving the hospital to begin a new healthy life exactly one year after I was diagnosed made me think that there was some meaning to this coincidence. I don't know what it is yet, but I'll figure it out.

As I was driving away from the hospital I noticed a small rash developing on the inside of my left arm. Didn't think much of it. When I got home, the first thing that I did was make a bealine for my bed where I plopped myself down and proceed to sleep for about 3 hours. By evening time my body was covered by that mysterious rash and my temperature climbed to 102.5.

The next morning we went directly to the Mayo Clinic (fortunately we live less than a mile away). The docs told me that I was experiencing a mild case of Host vs. Graft Disease! Wait a minute!, I though this could only happen with doner Bone Marrow Transplants. Not True! The docs explained to me that if your Bone Marrow becomes overactive (which appearantly mine was) your body creates an allergic reaction to suppress it's own immune system. The rash and fevers are basically an allergic reaction where the immune system turns on itself to stay in check. They said it would take a few days to clear up and not to worry. They gave me Prednisone to slow the allergic response and anti-itch medicine for the rash.

June 25, Day +16, Well I got through the rash and allergic reaction. It took 4 days to completely go away. It was not a pleasant experience (the itching drove me crazy). I'm feeling pretty good today and am looking forward to a more productive recovery over the next few weeks.

Today is Monday, June 16, Day +7
Today is Day +7. I've been feeling pretty crummy. Details later.

Today is Wednesday, June 11, Day +2
Today is Day +2. My WBC has bottomed out at 0.1 (actually they tell me it's really 0 and that the equipment will only go down to 0.1) They say that the WBC should be there for 5 to 10 days before they start comming back up. As far as I'm concerned, the sooner the better. I'm ready to get out of here. The only discomfort that I'm having right now is a very tender digestive tract (all the way from my mouth to the other end). This is caused by the high dose chemo that basically destroys the mucos membranes in your digestive system.

I'm killing the time by working on the computer, watching movies with my wife, reading and working out on the Stairmaster machine that the staff put in my room.

Today is Monday, June 9, Day +0
Today was Day 0. Here's how it went. Up at 5:00am for vitals and to begin pre-BMT fluids (ie. antibiotics, Benadryl, stuff like that). Shower at 7:00am, breakfast at 8:00 and begin procedure at 9:00am. They connected me to about every medical measuring device known to man. There was a crew of 7 people that handled the whole job. The folks from United Blood Service (the folks that stored my Stem Cells) showed up at about 8:30am to prepare the room and get the thawing tank set up.

At 9:00am the first of 8 plastic bags of my stem cells were thawed and placed in a large syringe. They handed off the syringe to Sue J. (the assistant director of the Mayo BMT program) for connection to my catheter. It took Sue about 4 minutes to push each stem cell load through my catheter. The whole procudure took about 1 1/2 hours to perform. The only side affect that I experienced was a slight allergic feeling in my throat and elevated blood pressure. The team assured me that this was totally normal and was caused by the presertive they add to the stem cells during storage. Other than that it was pretty anti-climatic, (considering I was having visions of the team dropping my stem cell storage bags like condiment bags and stepping on them and splattering it all over the floor!!! Didn't happen)

By 12:00 noon I was sitting quietly with my wife having a nice lunch in preparation for the long wait ahead of me for the stem cells to engraft onto my bone marrow. Sue J. says to expect between 10 and 20 days for my counts to start showing signs of improvement. By the way, my WBC was down to .8 at 5:00am this morning. Wouldn't be a good idea for me to take any leisurely strolls down the hospital halls at this point!!

That's it for now. I'll keep you posted on my progress over the next couple of weeks.

Sunday, June 8, Day -1
Here's a quick run down of my general Stem Cell Bone Marrow Transplant agenda.

Day -8 - Hospital check in
Days -7 to -3 - Hard Core Chemo (to kill everything but me!)
Days -2 to -1 (Sunday, June 8) - Rest

Tomorrow, Monday, June 9, 1997
Day 0 - Stem Cell Replacement
Day 1 to Day (10 to 30) - Wait for my counts to come back to where I can leave the hospital
Month 2 - Rest at home
Month 3 - Back to work but taking it easy
Month 4 to forever PARTY TIME! - (On guard at all times for relapse)

I basically don't remember Day -7 to Day -4, I was so doped up that I was out of it. Day -2 and Day -1 have been pretty good, except for the lasting effects of the chemo (i.e. mouth sores, fatigue, low blood counts, etc.) Tomorrow is the big day for the Stem Cell Replacement! 9am they will thaw my stem cells and suck them up into a syringe for infusion into my catheter. They say the whole process only takes about a half hour and is pretty anti-climatic. I'll let you know.

©1997 Diana L.E.G. Hinnrichs