Wednesday, April 10, 2002 Day -7
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".
4.8 grams of Etoposide (VP-16) over 34 hours However it is given in 12 doses each dose is 0.4g 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.)
Thursday, April 11, 2002 Day -6
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 Ondanzetron 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 comes in.
I am still feeling just fine today. My stomach is a bit grumpy feeling but nothing to complain about really.
Also continuing with the Dexamethasone 4mg four times a day.
Then there is my hero drug Ondanzetron. It is the one that is a miracle anti emetic (anti -nausea). If it weren't for Ondanzetron 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 :-)
Friday, April 12, 2002 Day -5
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!
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!
Saturday, April 13, 2002 Day -4
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 cells engraft.
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.
Oops not quite all, she just came in (6:00pm) and gave me more lasix. Here I go again.
Sunday, April 14, 2002 Day -3
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)
Of course there has also been the usual daily stuff like the Dexamethasone, laxatives, blood pressure meds, and Ondanzetron.
Monday, April 15, 2002 Day -2
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.
Tuesday, April 16, 2002 Day -1
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!
Wednesday, April 17, 2002 Day 0
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
Thursday, April 18, 2002 Day +1
Sleep sleep sleep. That is all I did today. I don't mind admitting I feel awful. At least it is an uneventful day with nothing to do but sleep. I know the upswing is coming, but I am anxious for it. It is very hard to feel so weak that you can hardly get out of bed to go to the bathroom. It really is like having a massive case of the flu.
They continue to take my vitals every 4 hours and as soon as I hit 38 they start the barrage of antibiotics, chest x-ray, blood culture etc. The doctor said they usually wait until 38.3, but she is going to move if I hit 38 instead. Better safe than sorry. (Holding steady so far at 37 - 37.3)
I have totally lost my appetite now. Likely have to start drinking boost shakes or something. I look at food and it just makes me gag to see it, although I do sip on a bit of soup.
Well it is just after dinner now and I am tired so I am going to bed (temp 37.9 keep your fingers crossed)
Friday, April 19, 2002 Day +2
Well it was an eventful night. No sooner did I send yesterdays journal than I spiked a fever of 39. They immediately started me on antibiotics, did blood cultures (had to be poked in the arm again for that) urine culture, and chest x-ray. Needless to say I had people coming and going all night long. The chest x-ray was cool, instead of going down to radiology, they wheel a portable machine up to my bed. Of course that was near midnight, but hey, I wasn't sleeping anyway. Then they did a cardiogram around 1:00am because I have been having some chest pains. All normal so we think it is acid reflux and heartburn, so I am on Zantac and Gaviscon now. They did another cardiogram this morning just to be sure, and it was also normal.
My temperature was back to normal today for a while, so I am hoping it is just a neutropenic fever and not an infection. However by 2:00pm I was back up to 38.2 so it is not over just yet. They did tell me to expect that, and my doctor didn't quite say "I told you so". :-)
I still have no appetite. I have given up even trying to eat, it just isn't worth the effort. However not to worry, I meet daily with the nutritionist and we are working things out. I can eat a bit of fruit, and she is giving high calorie puddings and shake supplements called "Resource Plus" (more or less the same as Ensure or Boost). So my calorie and vitamin needs are being met.
All in all today is a much better day than yesterday. Who knows if it will continue, but at least I felt human again and not so completely wiped out. The fatigue is still there but that is different from the dreadful way I felt yesterday. The fatigue is only noticeable if I DO something...lol.
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.
Saturday, April 20, 2002 Day +3
I really should post these things a couple hours later in the evening. The most fun seems to happen after 7:00pm. Last night it was hives. Big time hives. I went to the bathroom and when I looked at myself in the mirror I said to myself "Greg you have bumps on your head". Not a pretty sight on a bald head either. Then I open my shirt and nearly fainted, I was just covered from neck to chest in red bumps. It looks like I am allergic to the antibiotic they are giving me; Cefazolin (Ancef) so they switched to Vancomycin. Strangely enough Cefazolin is the same antibiotic I was on during my Staph infection in Feb. However the doctor said it is not unusual for allergic reactions to show up on the second use and not the first. They gave me Benadryl around 11:00pm but it didn't seem to do anything to make the hives go away. Neither did it make me sleep better, it just made me woozy and drugged up. I hope they don't give me more tonight. I will admit I was slightly relieved to find out it was just hives. The first thought through my mind when I saw red bumps was "shingles". No thank you I don't need that!!!!
My temperature is still erratic, but mostly running a bit high, 38.3. Tylenol does a good job of bringing it down, but they don't want to use it unless it gets too high because until they get the blood cultures back they don't know if it is an infection or just a typical transplant related fever.
I saw a Pizza commercial on TV and suddenly I had a craving for Pizza. It actually looked quite yummy. Of course if you had put a slice in front of me I still wouldn't have been able to eat it, but the fact that I THOUGHT it looked yummy might mean my appetite is on the mend. :-) (The small things we grasp at in hospital)
I had a platelet transfusion today because mine were down to 14, and tomorrow it is likely red blood and platelets since my haemoglobin is down to 81. Both are totally normal and expected, and it is quite possible I will need more the next day as well. However I am hoping to see some movement on my counts on Monday even though the doctor says it won't happen until Thursday or Friday. Always the optimist here.
All in all it was an OK day.
Sunday, April 21, 2002 Day +4
Last night was a great night. No Benadryl, just 2 Ativan and I slept peacefully throughout the night without waking up. It was blissful. Even after waking for my bloodwork at 6:00am I went right back to sleep until sunrise.
Once I did wake up I found I was very weak and couldn't really get out of bed. Bloodwork came back and my haemoglobin was down to 70 so I received two bags of blood today. White counts are still at zero today. Platelets were up to 19 but that is mostly because I received a bag of them yesterday.
My blood cultures did come back and it turns out I do have an infection. Another Staph infection but I can't recall the name. (Viridian or something like that-I'll have to find out) It is another nasty one, but the Vancomycin and Tobrymycin are the correct cocktail for it is I am on track to get rid of it. The only complication now is that my Hickman entry point is quite red and it is not clear if this is one of my many hives, or a site of infection also. There is a small chance they might have to pull it out. :-(
More lasix today as I am retaining a bit of water. I actually gained a kilo over yesterday and that is quite a trick when you are not eating anything.
My temperature was behaving until about 6:00pm when it roared up to 39.3. I took 2 Tylenol and am putting cold compresses on my forehead. After an hour that brought it down to 38.5 so hopefully it will still go a bit lower.
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.
Monday, April 22, 2002 Day +5
This is going to be a short one. Today has been a very bad day. The fatigue and weakness have kept me in bed all day and it is all I can do to get up go to the bathroom. This too they tell me is normal but that is hard to accept when you feel so awful.
They pulled my hickman line just in case that was the source of my fevers. So now I am back an IV in my arm and I will have to be poked every morning for my blood work. The doctor says maybe they can put a new one in in two days. I hope so because I don't like getting all these needle pokes. That Hickman was becoming my best friend.
I also have a yeast infection in my groin. Not a pretty sight. It has been there since the hives appeared so I though it was just more hives. However they have given me something for it, which should clear it up quick.
I am still not eating anything other than some of those Supplemental shakes. The doctor says that is OK because I have plenty of reserve....gee thanks doc. :-) It should turn around in a few days once engraftment starts to happen. Day 8 is the usual time for that so just three more days and hopefully things start to improve a lot.
Well if you thought last weeks summer heat wave was strange for April today's snow really made me wonder if I was hallucinating. What is this weather coming to?
Anyway that is all I have today.
Tuesday, April 23, 2002 Day +6
Another short journal, another weak day.
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.
I had another bag of platelets yesterday, and tomorrow it may be more red. My haemoglobin is up to 86 but that is not likely to last. Whites of course are still at zero, as is my food intake.
Well as I said this really is going to be short.
Wednesday, April 24, 2002 Day +7
I am happy to report that I slept well last night. Staying awake during the day really is the secret to getting a good nights sleep. No matter how hard I have to force myself to stay awake, it makes all the difference in the world. Today I even managed to take a shower which was quite nice since I haven't had one for the past two days.
No changes in my fever. It goes up and down. They are adding Cipro to my antibiotic mix just as a precaution. I did find today that I was shivering and freezing cold. I had to have 3 blankets on me. I only lasted about 4 hours but that was new. I have not had the shivers before.
There is some good news today. My white blood count went up to 0.1 YIPPEE!!!! HOORAY!!!! and all that stuff. The doctor says that does not qualify as engraftment...but doctors do tend to be party poopers. You just watch me get up to 0.5 tomorrow :-) On the other hand my platelets were down to 9 so I am getting another bag of them as I type this. One little bit of trivia I found out the other day about why they give you platelets. The don't give them to you to prevent bleeding from ordinary cuts and things, but to prevent brain haemorrhages.
I had another echo cardiogram today to make sure that my infection is not in my heart valves. It wasn't a very pleasant experience because they took me down in a wheelchair instead of a stretcher. I waited a good 20 minutes to get in, and by that time I was exhausted from sitting up.
My rashes from the Cefazolin allergy are slowing clearing up. They are adding an oral antibiotic for the yeast infection. I don't recall what it is called though.
I guess that is all I have to report for today.
Thursday, April 25, 2002 Day +8
If you recall yesterday, my white count finally came up to 0.1. I told the doctor, "you just watch me jump up to 0.5 today". No no no he says perhaps 0.2 or 0.3 but no more.
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.
Now despite all this good news I still feel crappy. Still too weak to shower today, but I hope tomorrow will bring more strength. As the day wears on I find I am not getting quite as tired as usual so that should be a good sign. Last night I slept well again so I know that staying awake all day is very beneficial. My blood pressure is actually quite low most of the time, but I am hoping it will come up once I start moving about more. Most of the time it is 100/60 but sometimes that diastolic even drops to 50. However just to keep them scratching their heads every once in a while it registers at 135/70.
By dinner my temperature was back up to 38.9, but hey you can't expect my thermostat to be working like a fine tuned Swiss watch just yet. I am sure by the weekend it will be more stable.
All in all it has been a very good day. My projected going home date has now been moved up from Wednesday to Monday :-) I am very happy about that. Tomorrow my plan is to try to get some exercise by walking around the ward. Assuming my counts continue to increase the doctor says that will be perfectly safe.
P.S. If you are wondering why I add this "today's cocktail" each day it is more for my sake than anyone else's. Years from now I want to be able to ACCURATELY say what I had during all this procedure.
Friday, April 26, 2002 Day +9
I told the doctors when I first started this procedure I was going to be a record breaking engrafter. Today's white blood count 8.3!!!!!!!! My doc admits he has never seen anyone go from 0.1 to 1.0 to 8.3 in two days, so I get my trophy for being a record breaking engrafter :-)
Platelets are up to 43 today (normal 150-400), and haemoglobin is up to 91 (normal 130-180). The haemoglobin unfortunately takes longer to increase because red blood cells have a life span of up to 120 days. White blood cells on the other hand only live for 6-8 hours so they are produced much faster Obviously stem cells have to devote more time to those rapidly dying white cells. (another lesson in biology from my doc)
One new problem did crop up that has them befuddled. I have a blind spot in my left eye. It is in the peripheral vision so it is not terribly noticeable, but nonetheless it is there and annoying. When I told the doctor about it they immediately took me down to opthamology for a full exam. Apparently oxygen deprivation to an area of the retina damaged it and left me with this blind spot. The eye doctor says it is likely to improve somewhat, but a full recovery is not likely. I have to come back in another week for a follow up appointment. What caused this oxygen deprivation? No one knows, they are all mystified. This is not a side effect any of the transplant team has ever seen before. See how far out of my way I go to be special...lol Oh did I mention they had given me lasix about an hour before taking me down to opthamology. Geesh as if I didn't have enough problems. Luckily it had done most of its work before I went down, but I still had to rush to the can a couple times. Luckily not in the middle of the exam.
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.
My temperature has also been stable all day around 37.5. While that is a bit high for me, it is well within the definition of "normal" at this time. I certainly feel better with a more normal temperature. My energy feels better and I feel less drowsy, and more alert.
I can't deny that when I look in the mirror I can see the effects of all this. I am looking a bit pale and weak but not too bad. The effects are more noticeable from the neck down where I have lost weight and body hair. Oh did I mention body hair before...strangest thing. About 2-3 days after transplant it started falling it in chunks. Just touch any of it and it would fall out. Then it suddenly stopped. I lost about half of it, but no more. Who knows maybe next week the rest to just drop off but that was so odd that it stopped so suddenly.
Saturday, April 27, 2002 Day +10
In a strange twist I feel much more energetic today, yet my haemoglobin took a bit of a dive today so I am getting 2 units of red blood. It was up to 91 yesterday but dropped to 77 today. My white continues to increase to 11.2. I expect this will now start to come down as the effects of the Neupogen wear off.
Last nights sleep was not very good. I kept waking up in drenching sweats. This is sort of good as it means the fever is breaking, but I am sure you can all appreciate how disgusting it is to wake up in the middle of the night in wet pyjamas and wet sheets.
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.
All my rashes are clearing up nicely. The original hives/rash caused by the Cefazolin is completely gone with just one or two stubborn spots still to go. The yeast infection is showing signs of clearing up too. Instead of being the hideous dark purple/red blotches it is now just red blotches. Trust me that is an improvement. Every day the Infectious Disease specialist is in to see me to examine the rashes, and discuss my antibiotics and the plan for my release.
These dinner fevers are one of my main problems right now. I hold steady all day long at a nice normal temperature then at 6:00pm it keeps going up to 38.5. The plan so far is that I go on oral antibiotics when I am released for about 5 days to finish the full course. However if I keep having these dinner fevers the infectious disease doc says that may change and I may have to stay on some type of IV antibiotic, which means another IV in my arm and a portable pump like the last time. (Dinner time up it is 6:00pm now and no fever so things are looking good)
I lost 2 kilos today, but that is after having lasix yesterday to reduce my fluid balance so it is more like 0.5 kilo's. The old appetite isn't doing much improving. Each morning I do manage my cereal and banana, and sometimes a bit of the high protein pudding. Lunch is usually pudding and "Resource Plus" shake, and a salad. Dinner is the hardest meal since there is no main course that I can stomach. So it usually ends up being juice and maybe some more pudding if I can handle it. I have high hopes for tomorrows dinner though. It is cream of broccoli soup and I love broccoli. I think I will be able to get it down. The main dish is a fish dish with potatoes which I don't know about, but ....the side dish included is........drum roll please.............creamed corn......AAAACCCKKK! You just watch how fast that goes flying out my window ....lol
Just one more day and then I am homeward bound.
Sunday, April 28, 2002 Day +11
Well this should be my final journal. Tomorrow morning I go home.
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.
Last night I spiked another fever but it was a little later at night (8:00pm) so it never made it into yesterdays journal. I was very disappointed about it. I am keeping my fingers crossed for today. I discussed it at length with the infectious disease doctor, and he thinks they will still send me home on oral antibiotics. I will then have to monitor my temperature and if I continue to spike dinner fevers then I may have to go back for consultation and a switch back to IV antibiotics. For now he has discontinued the Tobramycin.
I ate my dinner tonight for the first time. YEAH! I won't say I "enjoyed" it but I ate it. I'll take what ever small victories I can get.
I seem to be unusual in another respect. I never developed any mouth sores. They tell me the vast majority of patients do, and many of them require a morphine pump to ease the pain. For anyone else looking at an SCT all I can say is make sure you brush, and swish with the baking soda and water mouthwash 3 times a day. That will make all the difference. As awful as baking soda mouthwash is, IT WORKS.
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.
Well that is all of today's events. It has been an eventful 3 weeks that is for sure. I suspect I will have trouble sleeping tonight as I anticipate going home tomorrow.
Monday, April 29, 2002 Thanks to all
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.
I hope that my daily journals will prove useful for some of you who are going to face a stem cell transplant in the future. My whole purpose in writing them was to give you an insight into what to expect as it actually happened. Somehow hearing about it from someone who had it done in the past isn't quite the same as watching happen "live".
Did my transplant match my expectations? That is a very hard question to answer. As you probably recall I made many claims about how easy it would be and how fast I would recover and go home. I won't deny that was a lot of false bravado on my part, but I needed to do it for my own confidence. I guess the truthful answer is it was harder than I thought. The hardest part is watching your self get worse and worse each day for what seems forever. During those worst of days the thought running through my mind was often that I wished I hadn't done it. I wished I was just back at home doing something less toxic and hard on me. I just felt so down that I couldn't imagine why anyone would do this and I was a fool for doing it.
But that is the nature of being sick. At the lowest point is when our minds forget all the reasons we chose a particular treatment. Now that I am "sane" again, and I can look back at how sick I was I can honestly say it really was not too bad, and YES I would do it all over again. I am looking at a potentially very long remission from this protocol and that was the goal all along. It hasn't changed. I certainly did not expect to be given a free ticket to remission without paying some price. In this case I have paid a fair price.
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.
Monday May 13, 2002 Back to work
Yes indeed, it is just two weeks post transplant, but I am back to work again full time. Go figure. They told me to expect to be away from work for 6 to 12 months after transplant. Yet somehow I have recovered so fast, and so well that I am ready to go back now.
September 2002 Update
Well it has been an adventurous few months. The Interferon has been really difficult, and causing major depression even though I am on a very minimal dose of just 1.8 million units; Mon-Wed-Fri. Hopefully antidepressants will take care of it, but if not then the docs say I can stop the interferon. Other than that I continue to be in perfect health (well as long as you ignore the cancer...lol). Check back in 10 years and I will let you know if the SCT was successful or not :-)