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.

April - Map Recap

It's been a while since my last update and that's mostly due to me spending some extra time at home with the family with nothing extraordinary happening, which is a good thing.  My last round of chemotherapy was the second week of April.  I completed the one week hospital stay plus the twelve days of follow up in Orlando before heading home just before the end of the month.  I had a two-week break planned before starting the third and hopefully final round of consolidation in May.

In the background, the conversation around long-term survival rates continued with my doctor and the bone marrow doctor that came to see me during my last round of chemo.  The cytogenetic evaluation done when I first checked into the hospital classified me as intermediate risk (there's also favorable, and unfavorable). The bone marrow doctor was convinced that AML with intermediate risk needed a transplant.  He said without it, I would relapse most likely within five years.  He seemed very straight forward, knowledgeable, and convincing in his position. But it was hard to listen to the news at this point - when I was only a few weeks away from completing the original chemotherapy regimen.  I went back and forth with my oncology team during this time. They were telling me that my odds were not that much better with the transplant. I was caught in the middle of this discussion and had to go find additional resources to help make my decision.

The first place I went was to a friend who had AML in his early 40s, had the transplant, and was now living cancer free.  He still had a close connection with his doctor and forwarded the high-level specifics of my case.  His doctor agreed that the bone marrow transplant was the way to go.  Of course, his doctor was also a bone marrow transplant doctor.  I wanted another opinion of an unattached oncologist.  I made an appointment at the Moffit Cancer Center in Tampa. This happened on the Thursday before the Monday I was scheduled to check back into Florida Hospital in Orlando for my final chemo round. The oncologist there agreed again with the transplant. He explained that the intermediate risk area was a gray area and perhaps in another five years they would have it broken down further into subtypes that would benefit from the transplant. But for now, the latest evidence was leaning towards the fact that patients with AML with intermediate risk cytogenetics did benefit long-term from the transplant. Recent studies had shown that with the transplant, if you make it the first year without a relapse, I would have a 55% chance of staying cancer free for good.  If I make it 2 years without a relapse, cancer-free stats go up to 70%.  And at 3 years, they go up to 80%.  This was verses data for chemo which only that showed about the same 55% success rate in the first year, but by year 5 only 20-25% of patients had not relapsed.

During the stay in the hospital, they drew a large blood sample (see pic) to perform HLA testing which is the way they match up donors. They also began the process of testing my two sisters who each had a 25% chance of matching.  My sisters were only partial matches so next they went to the Bone Marrow database (https://www.bmdw.org/). Initial screens turned up several likely matches and further screening turned up two EXACT matches. So the issue of finding a donor was no longer an obstacle.

The fact that we had a great match for a donor and the result of the Moffit meeting convinced me that the transplant was the right thing to do.  The Moffit doctor also suggested that if the transplant was soon, he would recommend skipping the final round of chemo. He suggested that I would be better served to rest and recover fully to head into the transplant at full strength. So I cancelled out of my final round of chemo and spent the time at home.

It was great.  I was able to get the PICC line removed and feel like a normal human again.  My kids had tons of year-end school activities that I was able to attend.  And I managed to get in a fair amount of tennis.  I also worked on my general endurance mostly by biking. I did try jogging a few times, but it was still taxing. I was also able to complete all of my pre-testing to get final clearance for the transplant which included several trips back to Orlando for x-rays, lung testing, and my least favorite - bone marrow biopsies. All tests were good and with the cancer still in full remission, they scheduled me to start the process on June 10th.

If you want to dive further into the details of the transplant, here's a good site:

http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant