I arrived at the hospital this morning around 8:30 after a dreadful drive through traffic. At least the sun is shining though. But it didn't matter that we were late since my room wasn't ready anyway. No sooner do I get settled into my room than the nurse comes in wanting a blood sample so they can do a PT test. (That test for seeing how quickly your blood clots) I proudly open my shirt to expose my handy dandy new Hickman catheter and she says...."oh no, we can't use that. We have to do it the old fashioned way for a PT test", sooooo in goes another needle to the arm.
"Sigh", says Greg. Here I thought my days of being poked with a needle were done once and for all. Later another nurse wants more blood (and lots of it) but lucky for me she can use my Hickman. She also cleaned it all up for me and changed the dressing. 11:30am the doctor finally comes in to do the bone marrow biopsy. This one hurt more than usual, but he was really good about it. Every time it started hurting he would stop and put more freezing in. Eventually we got it all done.
I just found out that for Round #1 they are going to give me 16 litres of fluids (16 bags) in the next 34 hours!!!. Oh my, I am going to be spending a lot of time in the bathroom. Maybe I should just plug my laptop in there :-) In addition, I have to measure everything going in or out, so every time I drink I have to write down how much, every time I pee I have to do it into a measuring cup and write down how much I peed. When you pump this much liquid into a person they can easily become bloated, and it throws off the bodies chemistry, things like sodium and potassium. It also causes the blood pressure to rise dramatically, so they have to monitor those fluids carefully. If I don't pee enough, then they start me on lasix which is a diuretic which REALLY makes you pee a lot.
I have always found Sunnybrook food to be very good, but today was definitely an exception. Since I was late (their fault not mine) I got cold soup, and a cold plate of fish and chips that had been sitting around for an hour. YUCK! At least the banana was fresh. (Later) Dinner was much better. Delicious roast beef and gravy, green beans, and mashed potatoes. Yummy! Right in the middle of it though the cardio technician came in to do a cardiogram. Don't ask me why they picked the middle of dinner to do it. Had a nice chat with the doctor, and the pharmacist today. They both say that I really shouldn't expect to get sick at all. Few people do, and even if I do it won't be for at least another 4-5 days. At worst I will be weak, and mouth sores are the side effect that are most troublesome for those who do get them. They make it hard and sometimes painful to eat. But they give you all kinds of goodies to control that, such as mouthwashes with anaesthetic in them, special mouth cleansers, and a morphine pump if things get really bad and eating becomes too painful.
At any rate I feel just fine so far other than that slightly hyper feeling caused by the dexamethasone (a very strong steroid). It is strange that it is making me hyper this time since during my initial DHAP chemo I was on 40mg (one day only) yet today I have only had 2 doses of 4mg each. I will be getting 2 more doses though. It just may be a sleepless night, but then I am in a hospital and I am sure they have pills to take care of that too :-) I have always found so far just "ask and yea shall receive".
4mg Dexamethasone (decadron):
4 times a day
Ondansetron (Zofran): 8mg- 3 times a day Both the above are to prevent nausea, although the Dexamethasone is also normally used as a chemotherapy drug itself, but at 40mg once per day.
4.8 grams of Etoposide (VP-16) over 34 hours However it is given in 12 doses each dose is 0.4mg mixed with 1 litre saline, so in the next 34 hours I get 12 litres of hydration
4 litres hydration: This is given in addition to the 12 litres above so I get a total of 16 litres of water pumped into me over the next 34 hours.
I guess that is all for today. If there is any more excitement to report it will have to show up in tomorrows journal. ( I think I will have to change my signature line a bit now too.)
I am learning how run my own IV pump. Those dreadful pumps start beeping when they have finished pumping the required amount, but the bag always has another 75-200 ml in it. When it starts that dreadful beeping you are supposed to buzz for the nurse, and she comes in and simply tells it to pump another 50-100ml. Sometimes it takes 2 or 3 "resets" to empty the bag and it is a pain in the butt having to buzz the nurse and wait every time. So I just watched how they do it and now when it starts its infernal racket I just reset it myself until it really is empty THEN I buzz for the nurse. I got one of the nurses who is not from my floor to show me so I could do it right. But she made me promise not to get caught doing it myself....lol. So much for my promise though. When I finally did buzz and my regular nurse came in she looked perplexed, and says "that bag shouldn't be empty yet, did another nurse reset the pump?".. There I am looking sheepish, so I told her I did it. She said that was OK just so long as I buzz her before it is totally empty the next time. Whew! (This was all last night after I posted)
No sleep at all last night. That Dexamethasone just makes me too edgy even with 1mg of Lorazepam (Ativan). Tonight the doctor is giving me something else but I can't pronounce it so I will have to wait until I see the written order before I can tell you what it is.
I had a medical student in to "learn" from me today. I should mention for those who don't know, that Sunnybrook Hospital is a teaching hospital for University of Toronto. He was just a second year student and his job was to question me about why I am here. I think he may have regretted that.....lol He learned more about NHL from me in that 60 minutes than he will ever learn in medical school :-) He was quite surprised at how detailed my answers were. He was also quite nervous and I almost got the impression he thought I was his teacher testing him :-). When it came to the physical touchy feely examination his hands were icy cold.
All my regular doctors come to visit every day as well. I
have several regular doctors. There is Dr. Imrie who is the
head of this transplant program. Then there is Dr. Buckstein
who is the Doctor who is in charge of my particular
transplant. Then there is Dr. Mangel who is a Fellow
Got the results of my MUGA scan. My "ejection fraction" is at 58%. That means that every time my heart beats the left ventricle ejects 58% of the blood in it. A score of 50% or higher is normal. Not bad for this old couch potato.
Dinner was, well a let down. What ever I ordered for
dinner it was not what they gave me. In this whole world
there is only one food I despise utterly and completely.
Creamed corn. Puke in a bowl I call it. You can be sure I
would never have ordered any dinner with that in it, but
guess what I got tonight. BLECHHH! It almost overwhelmed my
Ondansetron to the point of failure...lol And I got my cup
of hot water but no tea bag :-( Only getting half a dinner
is not good for a person who is on steroids. I will be
prowling the ward looking for food tonight...lol I just
might start chewing on the nurses arm the next time she
I am still feeling just fine today. My stomach is a bit grumpy feeling but nothing to complain about really.
Continuing with the Etoposide. It is 6:00pm and I am just on bag #9 so I have three more after this. We are running a bit behind as I was supposed to finish this by about 8:00pm but it will be midnight before I am done.
Also continuing with the Dexamethasone 4mg four times a
Then there is my hero drug Ondansetron. It is the one that is a miracle anti emetic (anti -nausea). If it weren't for Ondansetron I would have barfed my guts out for the past 24 hours and be weaker than a newborn puppy dog.
Started laxatives today to, because all these drugs cause bad constipation. I'll let you know tomorrow if it worked
7:10pm. The nurse just came in and gave me a shot of
Lasix. They were not supposed to give it until after
tonight's Cyclophosphamide around 2:00am, but my balance
sheet shows that I have 4.4 litres of fluid in me that
hasn't come out yet so they have to get it out. Anything
higher than a 1.5 litre retention requires lasix.
Well that is about it for tonight - I have to pee :-)
Things are running a bit behind here. I was supposed to finish my Etoposide by 10:00pm last night, but it didn't finish until 7:30am this morning so now I am 10 hours behind. Doesn't sound like much but that could throw off my transplant by a whole day. I think the IV pumps they use here need re-calibrating (or replacing) I spoke to my nurse coordinator about it and we fixed it all up, more on that later.
She also tells me that the Carmustine which I get on Monday has the most noticeable side effects. It uses alcohol as a preservative so it makes most patients very loopy and well....sort of drunk, and makes their face flush red. And you guys thought I couldn't get a beer while I was in here...lol. Visitors are not recommended on Monday :-)Luckily for me last nights dose of lasix wore off by the time I went to bed. I still had to pee every 2 hours but with Lasix it is closer to every 30 minutes. The new sleeping pill they gave me Zopiclone (Imovane) worked like charm. Even though I get up every 2 hours, I fall asleep real fast when I go back to bed. Had more Lasix this morning and this afternoon so now I am at it again every 30 minutes or less after each dose.This morning we finally started on the Cyclophosphamide, albeit 10 hours late as I mentioned earlier. I had this drug before with my CHOP, but this time it is massive doses in comparison. With CHOP I got 1500mg each time for 7 doses, but they were 3 weeks apart. This time I am getting 14400mg in 4 days. It is given as a two hour drip, once per day for the next four days. Because of the massive dose used they also give you "hyper" hydration...oh damn more peeing. Hyper hydration means just that, LOTS of hydration along with some minerals added (potassium and magnesium) to keep the blood chemistry on target.
The cyclo is supposed to be given 24 hours apart, but after speaking with my nurse coordinator we are bumping up the next two doses of Cyclophosphamide by 8 hours each so they will be 16 hours apart instead of 24, to get me back on track. She says they often have to do that and it doesn't make a bit of difference as far as side effects are concerned. So far the hardest part of this thing is the boredom, and lack of exercise. I never thought this couch potato would complain about lack of exercise, but the only thing I can do here is wander the halls. The ward is a large square shape with the nurses station in the middle so I can walk around it a couple of times. However feel pretty silly dragging that IV pole around with me making all that noise as I pass everyone's rooms and the nurses station twice with each complete circuit. I am allowed to go out of the ward if I want to. That is actually a good idea since the hallway outside is at least 200-300 metres long. A couple lengths of that would be good, but I don't relish all the germs I would come into contact passing so many different rooms. Better bored than infected is my thought. I want outta here on time. I have suggested they install a treadmill or something but I don't expect to see that happen any time soon.
I have had no more food mix ups, and the food continues to be quite good. Then again you are talking to the guy who thinks that Prednisone pills have no flavour at all so what do I know. The nutritionist comes in every day to ask if I need anything, so I had her mark on her chart NO CREAMED CORN IN ROOM 369.
Tonight's dinner was especially nice since my brother came and visited and had dinner with me. We both did well food wise. He had Swiss Chalet for dinner, but I had a very nice Salmon dinner with mini red potatoes and carrots julienne. Yummy!
Finished the Etoposide at 7:00ish Started Cyclophosphamide 7:30am. 3600mg The usual 4mg of Dexamethasone four times a day Two doses of Lasix The usual assortment of laxatives (which finally worked) and blood pressure meds.
I'm still feeling real good. I still have that slightly
grumpy tummy feeling but that is about it. The nurse
coordinator says it should not really get too much worse. I
am looking forward to another good nights sleep. However I
have been having hiccups on and off all day. I sure hope I
don't get a case of Scott Pallack's terminal hiccups during
his SCT several years ago. (Not to worry, our list owner is
alive and well still, they weren't entirely "terminal")
P.S. Thank goodness Boston Rob got the boot on Survivor last night. What an ass! Bye Bye Sean next!
I have discovered there is something worse than the boredom. It is trying to remember all the nurses names.... Good old chemo brain is working over time here, and after a nurse tells me her name, I can forget it before she leaves the room. Boy do I feel stupid. I sure hope they are used to it. What a great bunch they are though. Most of them even remember me from my DHAP treatments in January and March.
Getting up in the morning is rough. This zoplicone (sleeping pill) really knocks me for a loop. I take it at 10:30 at night and yet even after I get up it takes a couple hours before I feel human again. I feel like I am in slow motion, and so doped up. Tonight I asked the doctor to switch me back to Lorazepam (Ativan), but 3mg instead of 1mg. I hope that will do the trick.
My blood counts are slowly dropping which is of course
good. The whole point of the SCT is to kill them all, well
nearly all of them. Remarkably though my whites are still at
3.9 today. (Normal is 4-11) They tell me they should hit
zero around day 0 or day +1 and start going up as the stem
I decided to take the chance and walk the main hallway this morning. I just had to get out for a bit. Things are pretty slow around here on a Saturday so I had the hall practically to myself, which was amazing considering how long it is. With a white count of 3.9 I guess there isn't much risk of infection in an empty hallway.
We cut back on the blood pressure medications because I am hovering around 110/65. While that is a great pressure it is low for me, and it will doing nothing but go lower as my blood counts drop. I already had that one fainting spell from low pressure after my first DHAP in January and I don't want to go through that again.
My appetite is starting to dwindle a bit, but considering
I have put on 1kg since I arrived that is no problem. I
still hope to lose 10kg by the end of all this. I know what
you are all going to say, an SCT is no time to be thinking
of losing weight, but hey I have plenty to spare. I am still
not feeling particularly sick, but I can feel myself getting
a bit more tired, and Mr. Grumpy tummy is still there.
Just Cyclophosphamide at 4:00pm. (3600mg) That one is
just a two hour drip so it is almost like having a day off.
Oops not quite all, she just came in (6:00pm) and gave me more lasix. Here I go again.
What a fine morning it is today. I slept like a baby and woke up refreshed and feeling grand. Well at least as grand as possible after all this chemo. I am glad to be off that zopiclone and back on Ativan.
One big change I have noticed is the time it takes to complete the morning routine. I bet I could give any woman a run for her money now. What used to take 15-20 minutes is now nearly an hour. I do everything in slow motion. Partly because the brain is in a half fog so you have to think about what you are doing. Second because the balance is not so good so you have to hang on to all the railings and things when getting in and out of the shower, or even using the toilet. Then of course you are constantly having to look where your IV lines are and making damn sure you don't tangle them and suddenly yank one by taking a wrong turn. I am more paranoid about accidentally yanking out that hickman catheter than anything else.
I just got my blood counts back. The drop has begun. Whites dropped from 3.9 yesterday to 2.7 today. Instead of the usual flag "L" for low beside it, it now says "critical"..lol no kidding. It is a very strange feeling, knowing that the whole goal of this is to knock them down to zero, but I still get a slight panicky feeling watching them go down, knowing my immune system is going down with them. It is hard not to want to see them go up instead. I am definitely starting to feel the weakness set in. I slept half the morning away. Tried reading a book but my eyes can't focus well enough and my attention span is about 2 paragraphs at a time.
However I took another trip in the hall today. Double trip in fact. This place is really empty on a Sunday. Most of this floor outside my ward is a cardiac research floor so there are not a lot of patients. That would explain why no one is here on weekends. However that is likely to be my last walk for a while. I am really starting to feel tired now, and I have been napping away quite a bit of the day.
I lost 2 kg today to so I am happy about that. Of course none of this means anything because between the hyperhydration and the lasix any weight gain or loss is likely to be all water an nothing else. For anyone who is wondering it is hard to explain how I feel exactly. It isn't sick, but it definitely isn't well either. I would have to say it comes closest to having a bad hangover but without the headache. The achy feeling all over, weakness, inability to focus the mind or concentrate etc. Not being able to concentrate is the hardest part now because it means I can't read much. I stare at the news paper or a book and nothing happens. I look at the menu they give me in the morning and it takes me forever to choose what I want.
It is the small things that are likely to be the most memorable though. For me I have this feeling I will never be able to tolerate the smell of popcorn again. The nurses here seem to have a craving for popcorn and when they make it you can smell it over the whole floor. The problem is it is making me gag. PUKE! that is what I want to do every time I smell it, and they have been popping it all day today. It doesn't even smell normal. It smells more like burnt caramel or something. But she tells me it is just normal popcorn and butter. I think after this my days of attending a movie theatre may be numbered :-)
I had a wonderful visit from Dorothy and David Connor from England this evening. We had a most enjoyable conversation and it is nice to to have someone fly so far just to see me :-) Ok well maybe they didn't come JUST to see me but it was a pleasure to meet them. We even got a picture so you just might see bald old Greg in the hospital in his PJ's, on the web site in a couple weeks. (I have no shame....lol)
The last of the Cyclophosphamide (3600mg) along with the usual dose of lasix and megahydration. Of course there has also been the usual daily stuff like the Dexamethasone, laxatives, blood pressure meds, and Ondansetron.
The downhill slide has begun. While I slept well last night, I do not feel well at all today. Run down, sick to my stomach and just plain weak. I did manage to eat my breakfast but only just barely. Food just has no appeal now.
If the weather reports are right it is going to be a balmy sunny week. I see the weather report calls for 25 today and 29 tomorrow. WOW what a heat wave that will be. I sure hope they don't forget to turn on the air conditioning here if that happens. I can't imagine 29 in April.
I can't seem to get this creamed corn theme out of my life right now. Barbara one of my nurses (and my favourite) loves the stuff. She says she looks forward to my transplant so she can smell it. She even makes a cocktail drink out of creamed corn, Guinness, peanut juice, milk and some other ingredient.
Today is my Carmustine day. That is the stuff they preserve with alcohol so I get my beer buzz today. However I can't say I can notice it much. It has been dripping for a few hours now and I don't feel any different, but a bit sweaty.
White counts dropped some more. Down to 2.2 today from 2.7 yesterday. Platelets are down a bit too, but not much. Luckily my haemoglobin is holding steady at 96 (normal 130-180) and the nurse says that should only drop to the mid 80's. That is good because the haemoglobin is the stuff that gets oxygen to your body and gives you energy. I don't relish loosing much more of that.
I do believe the kitchen staff around here have a perverse desire to ensure that if they have to be up and awake at 8:00am then so does everyone else. When they wheel in those big trolley's with the food trays, they couldn't make any more noise if they were the with the group STOMP. (You know those guys who put on a concert by banging things like drums, garbage cans, doors etc) BOOM BOOM BOOM is all you hear. I'd like to BOOM BOOM BOOM their heads :-)
6:30pm update Well the chemo is all done, it finished around 5:00pm. That is it, no more. Tomorrow is a day of rest before the transplant on Wednesday. I am going to need that. I am wiped out. Not sure if it is the cumulative effects of all the chemo or if the Carmustine is particularly nasty, but I feel like a bag of crap right now. Mostly I've just been snoozing away since about 4:00pm.
Well tomorrow is another day and it is likely to be worse, but this is what I came here to do, so I'll manage it. When I think of what the pioneer patients of this procedure must have gone through 15-20 years ago it amazes me. They didn't have the range of drugs we have now, and certainly not the antiemetics, and other symptom management drugs. I surely don't know how they did it.
Carmustine (BCNU) 900mg The usual dexamethasone and Ondansetron
Today is my day of rest. No chemo no nothing. They even
tell me I can leave the hospital for the day if I want. I
guess a lot of patients who live near by like to take a few
hours and go home for a little bit. However I am not taking
any chances with infections. I want out of here on time so I
am staying put. However I still get a great bonus. I am
unhooked from my IV pole for the day. YIPPEE. I can actually
go to the bathroom without dragging that thing around with
me, and trying to untangle myself. Of course now that I am
free of it I have gotten so used to it I still find myself
looking for it if I take more than 1 step away from my bed.
You just can't win.
It is early right now, but I feel better than yesterday. We'll see how the day goes. Nothing like a fresh shower and shave to perk you up in the morning.
I find myself eagerly anticipating tomorrow's transplant. Knowing that all this chemo will kill me, it is hard not to want those precious stem cells back in me as quick as possible prevent that happening. My life is in a little bag in a freezer somewhere and I want it back.
You can also tell I am getting closer to my white count nadir now. They have given me my own blood pressure gauge which stays in my room only. They are also using disposable thermometer strips now instead of those ones they stick in your ear. Everything possible to keep infections out. However I just got my counts and my white is still hanging in there at 2.0, and my haemoglobin at 96. Of all the counts it is that haemoglobin that I want to stay high as possible. White to zero is fine.
It is a stinking hot day today. Temp is around 30
degrees. Who ever heard of that in April. My room has a
Window so I get a nice breeze, but even a 30 degree breeze
is HOT. Hopefully it will cool down by night time. I have my
favourite little fan with me though. It is a little clip on
model that I had from my original hospital admission in 1998
for my diagnosis. I was so hot all the time when I was in
that I had to get this fan to cool me down. Looks like it is
coming in handy again.
I'd like to think that yesterday was my worst day. I feel so much better today, but my doctor says not to get my hopes up too much. A day or two after the transplant is likely to be pretty bad since that is about when the counts have hit rock bottom and the chemo has really had a chance to do it's nasty business.
Dinner was nothing to write home about, but then again
for dessert I had CHOCOLATE BROWNIES yummmmm.... Even chemo
can't make those away the taste for chocolate. (Believe it
or not the hospital actually makes good brownies )
For all you who are new to this and hearing the words SCT in your future, I just want you to know that this is DOABLE!
It's here, THE BIG DAY! I had a pitiful sleep last night. I keep dreaming I missed my reinfusion, or instead of stem cells they were hooking me up to an oil pipeline, and all sorts of weird dreams like that.
But I got up, showered and by 10:00m was in the pheresis room and they were premedicating me. Lots of pre meds, Benadryl, Ativan, Tylenol, and some other steroid I can't remember. Made me pretty dopey, but I watched in fascination as those two little precious bags of jewels slowly dripped back into me. It only takes about 40 minutes for the infusion but they keep you there for another 45-60 minutes to make sure you are OK. They used to do it at the bedside with a syringe, but not anymore. They prefer the comfort and safety of the pheresis room instead. It is amazing just how small those bags are, looks like about 50-75ml each. It is cool to watch them pull them out of their frozen container with all this fog floating around them as she puts it in the water bath to warm it up from -150F. The bag is stiff like cardboard until she thaws it. It is also interesting watching them compare labels to make sure I am getting MY stem cells. The label on each bag is compared to the written order, which is then compared to my wrist band, with each nurse calling off the names and numbers. It almost felt like a military exercise with people comparing launch codes.
Just as predicted I could not smell anything but everyone
else around me could smell creamed corn. Thank goodness I
couldn't smell it. I am told it will last a day or two.
My white count bottomed out today to. Down to 0.4 which is still not zero but it certainly will be zero by tomorrow. Happily my haemoglobin continues to hang in there at 97 though I feel very weak. And much to my pleasure I have lost another 2kg though the doctors and nurses tend to frown at that :-) However I am eating well enough and I even had two lunches today since they fed me in the pheresis room too. Unlike DHAP I have not lost my taste buds with this chemo, just my appetite a little. Food just doesn't hold much appeal even though I can still taste it.
Another day or two and it will be time for the upswing. It has been six days of chemo to do the nasty part of the job. Now comes the fingers crossed waiting part. Fingers crossed that I get no infections or fever (doctor says it is near 100% I will), but I don't plan to take any chances. They are all telling me that tonight or tomorrow I will hit 38 and automatically be started on antibiotics. I guess if that is just part of the routine I can handle it so long as it is not another one of those nasty staph infections I had during DHAP. If all goes according to "average" I get out in 2 weeks, but I plan to be out in 10 days. We shall see.
They also tell me to expect the mouth sores and fatigue
to really set in over the next few days, but then it begins
to get better. I am brushing and gargling with baking soda
regularly and they are also starting me on Nystatin
Well it is just after dinner now and I am tired so I am going to bed (temp 37.9 keep your fingers crossed)
Many thanks to John and Elizabeth for visiting today and filling me in on the scoop of Survivor. I don't think I would have slept tonight without knowing all the grisly details, since I slept right through it.
All in all it was an OK day.
This whole fever/infection thing is the most worrisome. While I know it is quite normal, it also represents the single biggest cause of complications and delays going home...to say nothing of transplant deaths. I know it is being handled expertly and I know there really is little chance of a problem. Yet knowing these things does not stop it from nagging at the back of your mind and making you worry anyway. Hopefully it will be another peaceful nights sleep.
Anyway that is all I have today.
The doctors all say they are pleased with my progress as I am totally "normal" compared to all their other patients. Nice to know this is "normal" feeling. My main goal today has just been to avoid sleeping too much because it just wrecks my night.
ONE POINT ZERO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yes you read that right it is 1.0 today. Engraftment is official! I showed THEM who's boss...lol Just to add icing to the cake, my temperature this afternoon-with no Tylenol intervention was a cool 37.3 ahhhhhhhhhh.....Along with the increase in white count came a corresponding increase in platelets. They went from 9 to 28. While I had a bag of them yesterday that would only account for an increase of 5.
It gets better still. I actually ate today for the first time in about 5 days. For breakfast a whole banana and a bowl of cereal. For lunch I managed their high protein pudding, and for dinner I managed to eat my vegetables and juice. (but meat still tastes disgusting) That is the first food in about 5 days. I lost another kilo in weight since yesterday, but considering I haven't been eating and I have only lost 5 kilos so far that is still not a problem. Quite frankly it's a bonus as far as I am concerned. I expect I will continue to lose some even after I get home since my appetite will be smaller and my activity level lower for a while.
I was unhooked from my IV all day today. What a feeling of freedom. I finally got out of my room since my counts are high enough, and managed to do a total of 6 laps around the ward (3 separate trips). As tiring as that was it sure felt good to MOVE for a change. I plan to do many more laps tomorrow. I get hooked up again at bedtime for my antibiotics, and they keep me hooked up all night to keep those kidneys flushed. The antibiotics are quite nasty to the kidneys.
I continue to do laps around the ward as often as I can
to build some strength and stamina. It definitely makes a
difference and it feels good too. It is so nice to get some
exercise. Other than when I am getting antibiotics or blood
I am unhooked from the IV pole all day and night so that is
a great freedom. It is so nice to be able to get up in the
middle of the night to pee and not have to fumble around to
unplug the IV pump, then worse still try to plug it in again
in the dark.
Just one more day and then I am homeward bound.
We may have to call NASA and see if they will loan me some rocket fuelled braking jets. My white blood count today is 15.5!! Although I had no Neupogen yesterday I suspect the shots I did have are still working, thus the very high count. One thing is for sure, any bacteria or virus that tries to enter my body is going be kicked flat on its ass before it even knows what hit it. My platelets are also increasing very nicely. They are up to 74, from 41 yesterday. My haemoglobin is up to 98 but that is mostly due to the two units of red blood yesterday.
Each day I have been feeling a bit stronger and stronger. Today I did several laps of the ward, then went out and walked the the main hallway too, and I wasn't too tired. About the only thing that stops me from feeling like I am getting a full recovery is the appetite thing. Still no improvement there. Maybe being back home will stimulate it better, after all a hospital is not the sort of place that makes you think about food. Most of the time it stinks around here. Either I can smell the meals being prepared, or one of the staff microwaving a snack, or some other unpleasant smell. Sometimes I can even smell visitors who are wearing too much perfume. People should know better than to wear ANY fragrance when visiting a hospital.
Good morning everyone. This is my last post from the hospital. In a few minutes I will be heading home.
I just wanted to take the time to thank everyone for their encouragement throughout this whole process. It made a big difference in getting me through every day. Thanks for the cards, both virtual and paper, and the many e-mails. I couldn't respond to everyone individually, but I do want you to know how much I appreciated your great support.
Once again I want to thank each and every one of you for being there throughout this ordeal. I could not have done this without you.
Well, here it is over 14 years later and I am still in remission (cured actually). To be honest, in the post from Sept 2002 above I wasn't really expecting this. Clearly there are some people like myself who may just be cured by stem cell transplants using novel immunotherapy protocols. Count me among them.
Here are the long term results from the trial I was in.