Greetings, faithful reader(s),

One milestone down. I passed the 100 days post-transplant mark on Monday. We didn’t have a cake because we were still working on the one we had for Mother’s Day. I did a little jig and made a note in my journal. My doctor didn’t even notice (the nurse did, though, bless her). As I said in my previous posting, the big milestone is the two-year mark. I have a ways to go so I might as well sit back, relax and enjoy the show.

Yesterday, I had my bi-weekly check-up and numbers check. I have been concerned about my declining platelet count so it was first and foremost on my mind when the doctor came in to discuss my case. He said my platelets had gone up to 108 from 91 and my hemoglobin up one from 113, so it was all good. He was not at all concerned about my numbers. He reduced my prednisone from 40 to 30 mgs. Best of all, he replaced my prosonol with another drug, flucinazole, which is a much cheaper anti-fungal.

My wife and I went to the pharmacy to get the drug and, of course, it was packed. There was a younger man in a nice suit sitting there, waiting his turn for bloodwork. I found an empty chair and took it after Alison said I should and that she would stand and wait. The young man stood up and offered her his chair. He said, ”You might as well take it, my number is almost up anyhow.” My wife and I broke into laughter and I said, “You might want to rephrase that,” and then he realized what he had said and laughed too. You need as much humour as you can get in that place.

So, everything is going well. Steady as she goes. My counts are all good. I feel pretty good on most days.  On Monday, I know I overdid it a little and was really tired on Tuesday. So I have resolved to ease up on the physical activities, build my nap into my daily schedule (coming right up after I finish this) and listen to my body. It will be interesting to see how it does this long May weekend—I have four outstanding lunch invitations from friends that I haven’t seen since last summer and who will all want to hear about my transplant.

And, oh, did I mention that I hit the 174 pound weight plateau today? That means I have put on 24 lbs since April 4th. Alsion had to put a padlock on the fridge this weekend when we bought her a cake for Mothers Day, knowing that the cake we bought is also my favourite flavour.

Another two weeks until my next appointment. Let’s hope those counts keep going up. I can hardly wait until they say I can come once a month. One step closer to returning to work….

Thanks for listening.

Greetings, faithful reader(s),

We’ve arrived at day plus 90, so we are almost as the 100-day milestone, and still things are going very well. I had my bi-weekly check-up last Tuesday and the counts are still good except for my platelets and hemoglobin which each dropped one. My doctor looked at the counts and said he was not concerned yet so we are going to let them go and see in which direction they want to go. When I asked him, how low will you let them fall before you are concerned, and he replied nonchalantly, if they go too low, we’ll just do another transplant. What??? Come again???  I roughly calculated that, at the rate they are dropping, it will be four years before they reach a critical stage.  Hmmm.

My prednisone dosage was reduced from 60 to 50 mgs daily and my doctor wants to drop the dose by 10 mgs a week. We have enough posonol for two more weeks, with one refill, and then,  thank god, we can go on a cheaper drug as this stuff is killing us financially. My magnesium level is good so there is no need to change the dosage and I haven’t had an infusion for quite a while so that has stabilized. So now we are going once every two weeks, which is easier on my wife. She returned to work full-time this past week so now I am flying solo. My biggest challenge is to keep busy and not watch too much TV and snack all day.

I make a list of all the chores that need to be done—the problem is that I make the list in the morning when I have more energy and then tend to plough them for the whole day, even when I start feeling fatigued. When I feel fatigued, I tell myself it is a mental thing and then push through the fatigue until I am lying on the floor. I don’t think I am ready to do laundry and vacuuming and grocery shopping on the same day yet. I have to start listening to my body and stop when it tells me to. I don’t get any extra points from anyone for pushing myself too hard.

While my wife and I were at the hospital on Tuesday—I waiting to have bloodwork done and she in the pharmacy, we each had conversations with patients about what was going to happen further down the line. I was chatting to a fellow who said he’d had his transplant a year ago last February. Unfortunately, he was one of those people who,  once you start talking to them, wish you never had. He was very negative about everything to do with the transplant process. When he asked me when I had mine, and I told him, he said, well, you’ll be back in here by Christmas. Why is that, I asked. He replied that, after they take you off your anti-rejection drugs, you’ll get every infection under the sun and need to be hospitalized again. The other patients in the waiting room said nothing. We were all rather glad when they called his name and he went to have his bloodwork done.

When the technician was preparing to do my bloodwork, she mentioned that one of the lumens on my port had been left in the “open” position for the past ten days. That was bad. When I asked why, she said air might have gone up the tube and I might have developed a blood clot. I need to pay more attention to that, it seems.

Meanwhile, my wife was talking to some patients in the pharmacy—you have a long wait down there so you get to talk to people—and she told me later that one of them said that the big day was day 730—two years post-transplant because that was when they knew whether you would be one of those who were considered “cured” or not one of those.

So, with someone saying that day 730 was the milestone date, and the guy in the waiting room saying that I’d be back in the hospital by Christmas and the doctor saying they just do “another transplant”, my head was spinning by the time we left for home. It still is. But it is a beautiful day today, and I think I will take a book out to the back yard and have a wee snooze out there this afternoon, the head-spinning can wait until tomorrow….

Thanks for listening.

Good morning, faithful reader(s),

A bit of a milestone, reaching day plus 75. I am getting closer to the all-important day plus 100. Things are still going very smoothly, knock wood. We received some good news at our appointment yesterday so I am feeling somewhat on top of the world right now.

After going through the blood-work process—it was brutally slow, about half an hour behind schedule and then we saw all the staff standing around in a clutch, laughing and joking about something while we were all waiting to have our blood-work done so we could get down to clinic, grrrr. Finally, mine was finished and we headed down to the second floor and clinic. Clinic was very full. We are starting to see some familiar faces so there was waving and nodding and saying “hi”.

Finally, we were ushered into an examining room where we waited some more. Our nurse, Lee, came in and took my vitals. My blood pressure is still a tad high (144/95) which Lee said is due to the cyclosporin, so no need to worry. Everything else was fine. Then a new doctor came in and had to start going through all the questions again, from the beginning. To which I replied, “No, no, no, no and no.” My platelets went from 53 to 52 so there was virtually no change and she was not concerned. She said my new marrow is producing platelets but, for some reason, they are not maturing or being destroyed—again, it could be the drugs. 

She said the bone-marrow biopsy showed the percentage of leukemia cells in my marrow is now 3%! That was a very good result, she said. I’ll say! From 15-20% pre-transplant to 3% is awesome. Hopefully, when they take the next BMB in July, that number will be zero. After the consult, we were given our next appointment date, three weeks from now, and we were glad to get out of there without having a transfusion.

We were but steps away from the hospital, when my wife stopped dead in her tracks and said, “#!*&$%, we forgot to renew our posonol, *$%!” It was true. That darned expensive anti-fungal medicine. Down to our last bottle, it certainly would not last three weeks. So it was back to the madhouse of a pharmacy to renew our prescription for the stuff. Take a number, wait forever, and then be told it would take an hour to fill it. Luckily, it was close to lunch-time and we went to Swiss Chalet to chow down while they filled our prescription (or so we thought).

We went back at about quarter to one to pick up the prescription only to find out that there was no refill order on the last one. Apparently no one had noticed this. The pharmacist said she had been trying for an hour to get hold of a doctor up in the clinic but was trying to reach the wrong doctor. So we went back up to the clinic, found our today’s doctor and explained the situation. She said she would fix it and it would be ready by the time we got back down there. And it was. Still, it was so aggrevating to have to wait so long. To us, the pharmacy is the weak link in the hospital—the pharmacy is too small, too packed with people waiting, too busy, you can’t hear your number being called out (the room is shared by a blood-taking lab whose technicians shout out what numbers are being called, it is a real Babel of sound).

So, it as a great day, spoiled a bit at the end by the pharmacy. I just hope the marrow recovers and starts churning out some good healthy, robust platelets. My wife is going back to work in a couple of weeks and so soon I will be on my own. I think I will like it, getting back into a domestic routine.

Today, we are going to see some financial person about setting up an RRSP, go shopping for a new BBQ and check out a new, giant grocery store. I need to find some place where they sell my favourite chocolate rolls—as if hitting 162 pounds yesterday wasn’t bad enough….

Thanks for listening.

Greetings, faithful reader(s),

Just a quick note to bring everyone up to speed. Oh, don’t worry—there is no bad news to report, at least none that I am aware of. I had my weekly follow-up appointment yesterday—reallly really early in the day. Our appointment slip requested that we have our blood-work done at 7:10 AM, which seemed rather suspiciously early to us because the blood lab doesn’t open until eight. Nontheless, we knew that the Tuesday clinic would be a madhouse because Friday’s had been cancelled due to Easter.

We rose with the roosters at 5:45 AM and were on the road by 6:30, arriving at a deserted hospital at 7:10 exactly. It was eerie, to see this bustling busy hospital so devoid of human life—I thought we were in a science-fiction, end-of-the-world type movie. All the lights in the  place were on. We took the elevator up to the fourth floor and made our way to the blood-collection section. The door was unlocked and all the lights were on but there was no staff there. We signed the sheet and settled back to wait.

Over the next half-hour various other patients appeared and we began to chat.  It turned out that two of them were on the  14th floor, and had their transplants, the same time as I did. We reminisced about the good old days, of the excellent nurses and Dr Loach and the god-awful food.  Then the nurses started calling our names and we went off to have our blood drawn.

After that,we made our way down the 2nd floor for clinic and joined the other patients who were waiting for their own news. It was starting to fill up quickly. We weren’t sitting long before they called our names and we went into one of the examining rooms. We’d been in that one six or seven times before and had read all the Flare and Elle magazines. One of my favourite nurses, Lee, came in and took my vitals. My blood pressure is still a little high—144 over 95. Everything else was fine. Twenty minutes later, my favourite doctor, Dr Loh, came in with my blood counts. Everything looked fine except for my platelets which have been drifting towards the low side for a few weeks. The count was now 95 which was cause for some concern. He said it might be the drugs, especially that old villain, cyclosporin, which gets blamed for everything.

Wee had a long talk about GVHD, which is still my main boogeyman. We adjusted the prednisone down to 60 mg daily from 75 and atenolol from 50 to 75 mg. All the way home, I stressed on the platelet count. Was the hidden menace I was so afraid of while all the other counts were so good—I didn’t even need a bolus of magnesium today because the count was so good. Maybe I was just so super weary because we had got out of bed so early this morning. I’ll just take the pills they tell me to take and see how the new doses affect the platelet count. I know they have a plan A and plan B for any contingency affecting my platelets. I needn’t worry. Too much.

My energy level is such that I can take a walk up and down the block once a day, can go the grocery store by myself (and try to resist buying every piece of dessert in the place) and today we went to Chapters and walked around drooling for about an hour without any ill effects. My weight is holding around 155-157 and I am now cooking a lot of the meals myself. My wonderful wife is returning to work full-time in a couple of weeks and I have to ready to go it on my own. The next clinic is on Tuesday so I’ll let you know how things are going….

Thanks for listening.

Greetings, faithful reader(s),

In a week where nothing much happened, I’d venture to say that it was a good week for me. I’m now sixty days post-transplant and my recovery continues to chug right along. All the symptoms of GVHD (rash, diarrhea) are now long gone. During our last visit, they gave us a week off from attending the clinic due to Good Friday this week and a conference to which all of the doctors are attending next week, so that was great news. The next day, however, we received a reminder that I had a post-transplant dental appointment at the hospital for the 3rd. I can scarecely remember going in the first time last January. I do recall thinking then, will I even be out of the hospital by April? It seemed so far into the future and the future was so uncertain then.

Then we rememebered we were due for that respiratory drug, Pentamadine, for the prevention of pneumonia. We thought the clinic was supposed to schedule the appointments but then they told us, no, we just show up once a month and they administer it. So, we thought, if we are going in on Tuesday anyway, for the dentist, we might as well try and squeeze the Pentamadine in.

We managed to squeeze into the Pentamadine clinic at literally the last second and were out in twenty minutes. We had time for lunch so we nipped down the street to a Swiss Chalet. My prednisone was kicking in about then, so I polished off my classic chicken sandwich and then proceeded to devour half of my wife’s fries. That just about filled me up but I didn’t quite enough room for a piece of red velvet cake so that would have to wait until later.

The dental clinic at PMH is harder to find than an honest Lannister (reference Game of Thrones) yet we persevered and arrived a little early, just in time to join the others waiting for their turns. One gentlemen started talking about his condition, a myeloma. We began talking about stem cell transplants and he said he was his own donor although he was rather confused about the whole process. I began explaining about my own transplant and recovery and it was quickly obvious that he knew nothing about my type of leukemia or its post-transplant path. 

That was a bit of an eye-opener for me. Here were folks who were taking a completely-different voyage than the one I was taking. They were travelling on ships very much unlike mine, taking a thousand different routes, over shoals and reefs and hidden dangers that my little vessel had safely skirted so far. They faced cyclones and whirlpools and sea-monsters and some of those brave little ships would never arrive safely at their destination. They are all brave passengers who board these ships, some knowing the odds are not with them. Yet they come aboard anyway and risk the journey. For myself, whose journey has been a veritable sea-cruise so far (but not so much that I don’t wear my life-jacket every day) I salute them and wish them well. Unseen, virtually unnoticed by the rest of us, they persevere and hope and wait their turn for a cure.

The dentist took about 45 seconds. He peered inside, did not see any sores or anything and pronounced me fine, next. So that was my last visit and I will be going back for clinic on Tuesday really really early in the morning. Better catch up on my naps…

This week has been notable for my emancipation. On Monday, my wife needed to go to work so I was on my own. I was feeling rather restless so I jumped in the car and went to fill up the gas tank and then go grocery shopping. All on my own! No adult supervision! I love grocery shoppping and really felt out of the loop for nearly three months while Alison did all the shoppping. My grocery list was very responsible, I thought and I kept to the list scrupulously except when I arrived at the frozen dessert aisle. That was when Mr Prednisone started whispering in my ear. “Look at the ice cream—its on sale! Look at the delicious chocolate cake—you know you love it. Buy two! And that frozen fruit from the sunny south, you could make something healthy out of that!” Oh, and some strawberry cream rolls and my favourite Celebration chocolate cookies. That’s it. Alison was not so upset that I bought these, she was upset that I went out alone. I’ve got to spread my wings.

And I hit 150 pounds!

Thanks for listening.

Hi, Janet,

Not sure when you posted this. R-CHOP can be a rough ride. How did you manage? What are your counts now? Is there a timetable for your SCT? I’ll be only too happy to give you what advice and guidance I feel confident in providing… Take care and be strong. Dave

Greetings, faithful reader(s),

Just a caution—I’m writing this while taking high-dose prednisone, so you have to read it really fast and really loud just to get the correct effect. I’m also eating an entire bag of sour cream and onion chips at the same time, which will tide me over until dinner…

I had my regular clinic visit yesterday, Friday the 30th, for blood-work and so forth. Wehad to be there by 8:00 AM which meant we had to leave Mississauga by seven for the one-hour commute with the rising sun in our eyes the whole drive in. I’ve reached the point now where my wife can park the car in the parking garage across the street from PMH and we can both walk over to the hospital together—my legs are getting stronger every day and I no longer shuffle along like an old geezer. Mind you, I am still prone to trip over invisible cracks in the sidewalk now and then.

While we waited up on the 4th floor to have our blood-work taken, we were jammed into a small little waiting area with another four or five couples.Some of them knew each other from having their transplants done at the same time and were chatting away. My wife, who will talk to anyone, anywhere, joined in and we found that two of the couples had their transplants around the same time as did I. So we caught up on old news—one of the fellows had massive purple bags under his eyes: turned out he was on the ward the same time as me and had his transplant a couple of weeks earlier. I remember seeing him walking up and down the ward. Turns out, some time after I was discharged and he was still a patient there, they let him walk outside one day and he tripped over an invisible crack in the sidewalk. The fall blackened both his eyes and he had to get his nose stitched up. That was a month ago. We all had fun catching up and exchanging information about changes in our appetites and how we all seemed to have lost the taste for chocolate. Mine has returned full-throttle, thank god.

After the blood-work, we went down to the clinic and waited for the results to come back. About an hour later, they called us in. Dr Lee asked how was my energy level and I replied about 60%. He asked about my diahrrea and I told him it was gone. My rash was gone. He said my blood counts were very good, my liver and kidney functions were very good. He dropped my prednisone (boo!) down to 75 mg, reinstated my magnesium to one tablet a day and reduced my cyclosporin to 75 mg twice a day. He said I would need a bolus of magnesium that day just for a boost.

Then he asked me what day post-transplant was I and I replied plus 57. He said they normally like to do a bone-marrow biopsy on day plus 60 and I replied okay, I’m ready if you’re ready. I’ve had four previously and while they are mildly uncomfortable, they are bearable. He said the last one I had, about a month before the transplant, showed that I had an infiltration of 15-20% leukemic cells. He said that they expect to do about three or four more biopsies down the road which should show a gradual decline in the total percentage of leukemic cells, hopefully ending in zero percent.

The BMB went off pretty well, although that first freezing needle does sting. They took their samples and then they sent us back to the 4th floor to receive an infusion of magnesium. The really good news is that I get a whole two weeks off. Next Friday is Good Friday and they are closed, and the Friday after that all the doctors in the clinic will be attending some seminar, so wow, yeah! I just hope something doesn’t go awry between now and then.

There is one little fly in the ointment, faithful reader(s). I don’t know if it is the steroids or what, but I have had a rough time sleeping the past two weeks. I am generally a little tired and nap a couple of times during the day. But at night, I read from ten to about eleven and then turn in. Then I toss and turn to three or four AM most nights (getting up four or five times to pee) and then fall asleep most nights around 4:30 AM. This is rough if you have to wake up at six to go downtown for clinic and not so bad if you can sleep until 8:30 AM on most other mornings. Then I would get up, have breakfast, take my morning meds and go back to bed until eleven AM.

Still, given how well things are going, I think it’s a small price to pay and I shouldn’t complain that much. The chips are gone. I think there is some chocolate cake left over from the kid’s birthday last week, hidden in the back of the fridge someplace…

Thanks for listening.

Looks like I have some catching up to do!

Apologies, faithful readers, but things have been speeding along rather briskly over the past few weeks. I’ve been home now for almost a month, and have had about nine or ten post-transplant follow-ups at the hospital since, and—so far—all the news has been fantastic! It’s almost too good to be true—I keep waiting for some bad news to pop up. I guess I’m just a glass-half empty type of person even when the glass is overflowing. Stop it!

All of my post-transplant visits to PMH have had very good results. My blood counts are rising steadily—a couple of days they re up and one day it’s down a bit, but on the whole up, up and away. I had to have one bolus of magnesium on the first week to top me off but now I am taking two (down from three) magnesium 825 mg tablets a day. These are big suckers and hard to swallow even with a quart of water to wash it down.

I’m taking calcium pills, high blood pressure pills, pills for who-knows what and some liquid (Prosonol) which is a hideously-expensive anti-fungal. I dare not spill any of that. Thank goodness my Virgo wife has created a chart to tell me what pill to take at what time of day. Try as I might, I can never miss a dose. Darn her efficiency!

We’ve been waiting for GVHD to raise its ugly head and we think it did two weeks ago, or it might have been the eggs. I had scrambled eggs for breakfast one Wednesday—never a good idea as eggs and I do not agree at all—and all I had terrible nausea. The next day while admiring my emaciated frame after a shower I noticed a bright red splotchy rash over my trunk, legs and arms. A few hours later, I developed a nasty, dry cough and a headache. And then temperature spikes. All that in one day. It wiped me out and sent me to bed for most of the next two days.

On the next day, a Friday at the clinic, two doctors and a nurse checked me out and said my chest was clear, good news there. They gave me some cream for my rash and warned me about high temperature spikes and how I needed to get to an emergency clinic if mine went above 38.5 degrees. Well, needless to say, over the weekend I went above the red line two or three times, but—darn it—it was after nine o’clock on a Saturday night and who in their right mind goes to a germ-infested EI then? The spike only lasted half an hour and then went back down. Mind you, do not try this at home, kids.

On the next clinic visit (Tuesday last) I got some new doctor: he did not introduce himself to me or my wife and his words were,’So what’s the matter with you?” It just so happened that on that day, I was totally out of it. I literally could not wake up. I could not describe my symptoms, could not recall the term GVHD, and must have resembled one of the Walking Dead. He prescribed six more different pills and sent me home. One of those was prednisone for the rash. Welcome back, old friend.

Once I started talking the medication, the rash started to go away, the cough and the headache disappeared, as did the temperature. Everything looked better and at my next clinic (last Friday) I was a new person. In fact, everything had improved so much that my doctor said it was safe for me to go out into the general public and eat out, following the usual safety prtoocols. What great news!

To celebrated, my wife took me grocery shopping on Monday. Who would think that pushing a cart around a grocery store for an hour would wear a guy down so much? I was so pooped when I got home I couldnt even take my shoes off for half an hour. Still, it felt good to get out in the fresh air and now I know how much I need to get out.

Which brings us to today. At the clinic today, my doctor said all my counts were good and, by the way, would I like to go from two days a week to one day a week? I was absolutely stunned! Once a day is only supposed to happen after a hundred days of post-transplant. Of course, I said, absolutely I would. So, I have a week off and then it is back next Tuesday.

I must believe that, in addition to my some extraordinarily potent donor marrow, it must also be all of your prayers and good wishes sent my way. Keep them coming, my friends, keep them coming!

No brainer—my Hickman port! I never leave home without it.

Hi, Jill,

I was diagnosed on my 50th birthday as well—in 2002. I had my first chemo in the spring of 2006, FC, which lasted until 2011. I hope your journey will be relatively uneventful. If you have any questions, please don’t hesitate to contact me again and I’ll answer what I can—if my chemo-brain lets me!  All the best, Jill. Dave