Or, as it is referred to this year T+8 (8 days removed from the transplant). Lots of minutiae type developments and some uglier stuff I've had to battle through over the past week, so I'll try to briefly break it down and give you the upcoming plans.
I think my last post gave the account of the slight trauma involved with the transplant itself and how that was able to me managed fairly quickly. For a couple days, all was progressing as to be expected and then had some side effects show up pretty quickly.
First, and not sure this is a side effect or not, but my right lower leg became very sore at times. Normally, I would just chalk this up to a nice bout of sleeping on it wrong or overdoing it on one of my massive lower body workouts (cough cough), but they want to know everything, so we had several people look at it and even had a Doppler test run on it for clots, but nothing showed and we dealt with it through pain meds. It still flares, but I think its just a product of bad leg positioning at some point.
Before the kids left for California for Christmas to see their family living out west, I got to visit with them down here for a bit which was very cool. They won't be back until the 28th, and we won't really celebrate Christmas until I get home anyway, so it works out well for a double Christmas for them the 1st week of January. Jimmy gets the annual "double up" as he is a New Years birthday as well. This meant that it was back to just Lynn, and my parents "in the house" for the next 10 days or so. As you may or may not have known, we had begun a family room/kitchen project back in September and it appears to be mostly complete except for some trim. Lynn and Mom have done an amazing job with the painting and prepping/finishing work and I can't wait to see the results. Inside of that we had cabinets, and flooring installed the was long overdue (almost up to 20 years worth of upgrades).
Back to my progress. About Saturday night last week, and I mean it happened fast, just before bed I got my first bout of nausea with very little warning. My catching reflexes from the teenage years had me to the sink as if I were chasing a wild pitch with a man on 3rd and I made it just in time. This is about 11:30 pm and it caught me by surprise in a big way. The next half hour was not a whole lot of fun. While I had been feeling nauseous most of the evening, I didn't expect a quick culmination of forces so quickly. I was immediately put on Ativan to control the nausea and for the most part, it did its job... until the same time the next night, when it happened again... we are not establishing a good pattern here. Even with the Ativan and other antibiotics, the side effects were getting through. Everyone felt that these side effects were mostly a result of the chemo and not the transplant, but what the hell, its all related somehow to the AML Myelodiplasia treatment anyway.
That gets us through Sunday and working into Monday. Still feeling quite good even though my hemoglobin counts indicated that I was going to get 2 pints of blood on Monday, and just for kickers, might as well get the plasma as well because it was going to happen anyway. 2 units of blood and 1 of plasma makes for a full day of IV's. the more the merrier. Interestingly, I am still receiving B+ blood and will continue to until the engraphment takes place (I'm told that will be starting this week and I would get the new AB+ starting sometime in the next month or two).
And to that they had a desert of a diuretic (lasix) to get make sure I was discharging (more measuring!) and not retaining the anything that might be harmful. Unfortunately, it meant the bathroom stops increased 2x. (and I was just getting used to it every 2 hours!). Rest assured, this was only a 1 day process, sure... and I'll bet there will be a solar eclipse soon :)
Seems like a lot, but we are only up to Tuesday and this is where the fun begins. As usual, the sleep patterns continue to get worse with the nausea and body full of drugs causing side effects. The next side effect in line is developing a fever that the team can't break. My WBC's have crashed to the expected low of .0.2 (which is considered 0, and expected.). About 15% of patients develop a problem at the start of the engraphment process that results in a high fever running in the 102-103 range. Normally, they would treat with Tylenol, but with such low counts, the Tylenol has to be monitored pretty close as it will attack the liver. So, effectively, the Tylenol was fairly ineffective over the 1st day and half and I spent that time not getting out of bed at all except for the diuretic effects and a couple showers to try and help break the fever, all to no avail. So the fevers continued for 48 hours and I had massive amounts of blood drawn for cultures which have ended up negative, Xray (negative) and a CT Scan to look for infections. The CT was another follow up to the CT's
With the infectious disease team and the transplant doctors conversing on this, they felt that the fevers were an indication that the graft was being combative, causing the side effects, but not affection the actual engraphment. This is treated with heavy steroids which were started Wednesday mid morning, along with some heavy antibiotics (new) until all cultures and fevers were clear. The steroids did their job and within hours, my fever broke and I felt like a new man, but very tired. And to prove how tired I was, the steroids gave me a full dose of insomnia Thurs night and I did NOT sleep at all. Those who know me well, love when I'm really tired, great disposition. There's a funny (ha ha depending on perspective) story in here that just can't be posted on this blog, but since my first gift on this holiday were some Depends... never mind, I'll be more careful)
Based on the steroids progress and my feeling 1000% better physically, the doctors are very confident that all is back on track. In fact, the neupogen shots (administered to the stomach) to promote WBC growth, started Wednesday on time and we are seeing some small but regular growth in the numbers (0.9 as of this morning) and should continue to go up and hopefully spike early next week leading to a prelim decision on me getting outta here, but I don't want to get too far ahead.
So last night wasn't much better on the sleep front, and about 4:am, I remembered I had my Ipod with me and pulled out the old standby music for some good rest. Haven't heard it in a while, by Natalie Merchant and the 10,000 Maniacs did the trick for about 4 hours until the morning doctor invasions and daily routine started on Christmas morning. Lynn, Mom and Dad should be here shortly and we'll have a small celebration in the room for the afternoon, but are reserving most of Christmas for when I get home and the kids are there. We love and miss everyone, so wherever you are, have a great couple days and as always, thanks for all the support and notes.
