T + 30, Return of the Taste Buds

It wasn't a day after I wrote the last entry when I broke out in hives all over my body.  Very itchy and almost a burning sensation.  In addition, the last two weeks have seen a few bouts of nausea, chills that pop up at irregular intervals, and some major blisters on the bottoms of my feet simply from walking around the neighborhood.  So my body is still at war with itself as the new cells take up home. 

All of the trips to the clinic have been fine.  I receive a bag of IV fluid to continue to keep my body hydrated.  But other than a little magnesium yesterday, I haven't need any other transfusions.  Most of the battle is dealing with the side effects of the transplant.  In talking to the doctors and sitting in the clinic hall with other patients, nothing I'm experiencing is unexpected, just unpleasant.  Yesterday they took a marrow biopsy at the clinic, so add a shank wound to my lower back to my list of ailments.  From this biopsy they'll test that the AML is still in remission, and they'll also test to see the percentage of blood inside the marrow is from the new cells vs. the old cells.  A high count from the new cells is expected which shows that the engraftment was successful.  From here I continue with my office visits 2-3 times per week up through 100 days when they will take another (and hopefully final) biopsy.

My taste buds are slowly returning although food still tastes dull.  Joanne continues to make all my meals as I'm still on a restrictive diet and I'm not allowed to eat restaurant food for fear of contamination.  I was doing a pretty good job walking a few times each day until the blisters developed on my feet this past weekend.  My skin is obviously more sensitive than usual since walking two miles should not have normally caused such damage.  They're feeling better now, so I hope to resume my exercise soon.

The kids have stayed busy with camps here in Orlando.  Brenna is even going back to Vero to stay with her best friend this weekend.  We've been someone limited to watching TV / Movies since I can't really go out into crowds.  But we've managed to entertain ourselves so far.  Our plan is to remain in Orlando through mid-August, then head back to Vero when school begins.  I will be up around day 60 by then and hopefully will be down to two visits per week to the clinic which we can commute to from Vero.

T + 17, Independence Day

I had a great week after being released from the hospital.  The kids were all away still with camps, it allowed Joanne and I to get into a routine out of the hospital.  The best part of course was eating my wife's great cooking rather than hospital food.  I was also able to start with some mild exercise and stretching as I begin to rebuild.

I had two follow-up visits to the clinic and both went well with no need for any additional fluids to on-board.  My mouth and throat were the last sore spots remaining from the chemo treatments, they are healing slowly.  I'll continue to visit the clinic 2-3 times per week with the next big milestone coming up at Day T + 30 when they'll take another marrow biopsy.

All the kids will be back today, really looking forward to seeing them and being together for the fourth.

T + 13

I woke up early from another broken night of sleep at the hospital. Hopefully my last one as I'm scheduled for release today.  It's been 21 days since I checked in which brings my total for the year to just over 60 total days in the hospital.  This one was both mentally and physically challenging.  The first week of chemo and anti-rejection medications made me sick.  The transplant itself was smooth, but I took on several of the typical symptoms post-transplant.  Sore mouth & throat, upset stomach, and fevers all featured in the week following the transplant.

The blood numbers have progressed as planned, first zeroing out then starting their comeback generated from the new cells.  By Friday (T+10) they had recovered to release levels.  I just needed to hold them for three days to get the official word.  Today is the third day and everything is still in line.  I do still have some mouth sores and I'm experiencing Engraftment Syndrome where parts of my body feel warm and itchy.  This is another sign the new stem cells are taking hold.

Once I'm released, I move to the next phase of the process which is to get to day T+100 which will involve several visits per week back to the Cancer Clinic where they will continue to test my blood levels and transfuse any liquids that are off.  At day T+30, there will be a test that will determine what percentage of my blood is getting produced by the new cells verses the old.  They will also perform another bone marrow biopsy to test for any return of leukemia.

Cliff Hanger

Sorry for the Cliff Hanger, I'm still here.  The transplant took place on June 17th without incident and I've been recovering as expected so far.  There have been some sleepless nights, two bouts with high fevers, and continued GI discomfort.  I spent most of the first two days post transplant in bed feeling like I'd been run over by a truck.  I'm catching up with the fatigue now and the fevers have stopped.  We're still waiting for the WBC counts to zero out which allows the new cells to take up home in the marrow.  After that, they will begin to make blood cells again and recover my counts.  That's all suppose to be around 12-14 days post transplant.

Tricky Rabbit

T minus 2 (June 15)

Well the good news is that I'm done with the pre-chemo, but after getting sick overnight my stomach was not feeling any better.  I had to switch to bland diet of soup stock and crackers to get through the day.  I still have to continue the Rabbit through tomorrow and I'm assuming it's the thing causing the problem.  Of course, I'm stocked up now with so many meds, it could be a combination of them.

T minus 1 (June 16)

All meds are in and now it's mostly waiting around until tomorrow for the cells to show up.  I have flashes of my donor calling in sick or some freak storm causing a traffic backup that doesn't allow the Currier through.  I asked my doctor if they fly the stuff in via helicopter, he says no, just standard overnight delivery.  Crazy.

I'm still not feeling 100% on the digestive track but I've been able to eat a little at each meal.  The kids are getting tired of coming to the hospital, but have been making the best of their Orlando time.  Joanne bought them all passes to Aquatica park and tonight my sister is coming over with their cousins to hang out for a while.  I was able to top off a week of soccer by watching the USA v. Ghana World Cup game.  I took a walk after the game as my exercise has fallen off a little with the upset stomach, then a quick shower and to bed.  I could already tell it might be a long night.

Counting down the days

T minus 5 (June 12)

Joanne and the kids finished packing up the house for the summer and drove to Orlando.  They made it up in time to bring me some dinner and then stay on to watch the kickoff of the World Cup in Brasil. Tomorrow they had their eyes on going to Sea World's water park called Aquatica. At the hospital the second round of chemo well by without any problems.

T minus 4 (June 13)

I started my day with some more extensive exercising.  I'm determined not to let the stay affect me as much as my first one here.  There's no general restriction on exercise except that I have to always take the stand.  The central line rules do not allow any time off if for walking around freely.  The family stopped by after their Aquatica adventure, they had a good time there and now have passes to return all summer.  The World Cup had three games so no wasting time on soap operas.

T minus 3 (June 14)

The last day of pre-transplant chemo, there's more to come after the transplant to make sure my old cells don't grow and the new ones are allowed to take hold.  The chemo was going find, but today there would be an additional medication called Thymoglobulin, it's derived from Rabbit protein and is nicknamed the Rabbit.  Seems cute a fuzzy enough.  They did tell me that shakes and chills area  common side affect.  They weren't kidding.  My the midafternoon I felt like I was in a full-blown cold with aches, pains, and chills.  I lost my appetite for dinner even though Joanne had made a great homemade blueberry dessert.  I did manage to get that down, just like Lard Ass in Stand By Me...

My suffering became worse during the night and I started to experience some nausea.  Several times I fell to sleep to stave it off, but it was no use.  By 2:00am I was reaching for the plastic bucket and calling for Tylenol for my head.  I spiked a fever, which triggered additional blood cultures and a check X-ray.  I'm feeling much better rolling to T minus 2 but pretty tired.

The countdown begins

T-minus 7

With the transplant now scheduled, all days are measured from the transplant day.  That makes Tuesday, June 10th Transplant day minus 7 days.  The prep work begins.  I only had one procedure today, but the hospital scheduled it for 7:30am with a check in time of 6:30am.  Joanne and I drove up Monday night to my Mom's house in Orlando to cut down the morning drive. It didn't take very long before I was in the operating room to have a central line inserted through my chest.  I'm not sure why this is a better choice than the PICC line, but it seems like standard procedure for marrow transplants.

The rest of the day was spent checking into my room and unpacking. They hooked up IV fluid to begin hydrating my kidneys, but otherwise I was left to work and rest.  Joanne hung out for the day through dinner time, then headed back to Vero.  I was left with the NBA playoff game that didn't go so well for the Heat.  It gave me a good excuse to turn it off at half time and go to sleep.

T minus 6 (June 11)

The Drs started to make their rounds, but I still wasn't scheduled for any chemo until 9:00 at night.  I was able to work the majority of the day without too many interruptions.  With all my family out of town I had to break down and order lunch from the hospital.  It isn't any better than last time.  I slugged down a nasty piece of grilled chicken while I developed a new plan for dinner.  When I was watching a CNBC show, they featured Grub Hub which offers delivered take out food in metro areas.  One of the benefits of being in Orlando is that services like this exist.  So I found some nice Italian stuffed shells and ordered them online.  Less then an hour later, they were at my door in the hospital - good to know.

The pre-meds started at 8:30, chemo 1 at 9:00, chemo 2 at 10:00. Then there are five follow up blood draws through the night to help measure how quickly your body metabolizes the chemo.  The doctors will adjust the future doses based on these results.  The good news is that there is only four days of chemo in the entire plan.  All going smooth so far.

Just to leave you laughing, one of my PAs is named Dr. Balls.  I'll need to keep an eye on what he's doing.