T + 100

September 24th was my weekly appointment at the clinic and day 99 post transplant.  Close enough.  They took the 100-day biopsy that Wednesday and sent it off to the lab and the wait began.  It's typically 2-3 business days to get results back.  There's was nothing in the weekly blood tests that would cause us any concern, so we had been assuming this would just be a confirmation that there was still no leukemia.  But any time you get a big medical test and then have to wait for results, you find that your mind starts to enumerate on the possibilities.  I checked on Friday, no results. That means we had to wait out the weekend.  I checked Monday, no results.  Now I'm starting to wonder if they have results in but don't want to tell me via text and are waiting me out until my Wednesday appointment.  Finally on Tuesday the word came back, the bone marrow is clean and 100% made up of the donor's cells!

On one hand, we certainly felt a great sense of relief passing the test even though we had anticipated those results for a while.  But while there's a lot of hype built up around the Day 100 mark, it's not a finish line by any means.  The more we talk about what's next with the doctor, the more we see it's just a mid-point.  There are two things going on here, the transplant and the leukemia.  They are related of course, it is eventually the new immune system that will keep future leukemia in check.  The 100 day mark is more about the transplant.  So all signs are positive there.  And it's certainly a good thing that there has been no return of leukemia during this critical time.  But, my doctor said he won't feel relaxed until we get to a full year out from the transplant date.  80% of the patients that relapse will do so in the first year.  So if you can clear the one year mark, your odds are very good that you won't relapse and they will continue to improve through year 2 and year 3.  That said, my immune system is still very immature.  The doctor has warned not to let my guard down.  I still need to avoid big crowds, uncooked fruits and vegetables, fresh cut grass, clay tennis courts, etc.

Just as all that good news was coming my way, I started to develop a bladder or urinary tract infection.  They put me on an antibiotic and took a urine sample.  As it turns out, the test results showed that my infection was resistant to the prescribed medicine so I made no improvement over the first week.  They changed the prescription over to a different antibiotic.  This one worked better but had the side effect of dizziness.  One afternoon I jumped up off the couch quickly, went around the corner, and experienced a huge head rush that sent me sprawling to the floor.  I caught the corner of our bureau in the ribs on the way down.  I didn't completely black out and it passed quickly, but I definitely sustained a deep bruise or possible cracked rib in the fall. (it still hurts two weeks later)

The infection caused a rise in my creatinine level which is a measure of kidney function.  All this get a bit troublesome as a urinary infection can back up into the kidneys and blow up into something that would put me into the hospital.  So the doctors put me back on every other day office visits to give me extra IV fluids and monitor the levels.  If you recall, I had my central line removed which has been great.  The penance however is that each time I go to the clinic they have to stick me to draw blood.  Not a big deal once a week, but every other day it starts getting old. Anyway, the extra visits and a lowering of my immune suppressing drug seem to have done the trick and the levels are returning to normal.  If I check out ok on Monday's visit, I can go back to once a week visits and if they hold for a few weeks, drop back to every other week.

So overall it's good news.  I can stop counting days and start counting months after the transplant.  Six months is the next milestone (Dec. 17th). But I can see just how frail the whole system is currently and how easily it can fail.  I've been biking and even trying to jog a little now.  My legs can only handle about 20 minutes of slow jogging at a time.  Joanne and I have hit some tennis balls, again the hardest part is moving my legs fast enough to get into position.  And for some reason, she won't hit them right to me.

Sweet Day T+85

The days are cruising by now that I only need to visit the clinic once a week. This week's trip was very productive. I had my clinic visit at 9:30, they drew blood for labs and gave me an IV bag of fluid. Over all, numbers continue to be good. Only two weeks until the T+100 day biopsy.

I have a monthly breathing appointment with the respiratory department. They give me a medicine, which is technically a chemotherapy drug, orally. I have to breathe it through a vaporizer. It only takes 10 minutes and I get a blow pop when I'm done, so it's one of the more fun locations of the hospital.

After that I returned to Interventional Radiology to have the central line removed from my chest. It has been three months to the day from when they inserted it. I was more than ready to be done with the three leads dangling on my upper chest, having to keep them flushed, changing the dressing that covered the insertion point, and having to cover the site when I showered. The only trade-off is they will have to stick me each time they need a blood draw now.

I was told by the scheduler that I would get IV sedation for the procedure, so I wasn't able to eat anything that morning. When I arrived at the prep area, they asked me if I wanted to do the procedure with local anesthesia or with IV. A surprise trick question I thought. If they offer IV sedation, there must be a reason. But with just local, I could go right after the procedure instead of waiting for an hour more. It seemed simple enough, just a cord to yank out.

So I manned up and said to just give me the local. The shots of lydicane were the worst part. The only issue, the Dr. explained, is that there is a small ring on the tube just inside your skin which acts as a barrier for bacteria. Your body will add its own scar tissue to the foreign body so when you go to remove it, you have to tug pretty hard.

The pain was minimal during the procedure and the line was removed! The site just needs a few days to heal and it should be as good as new. There was definitely some discomfort after the shots wore off, but all worth it. I celebrated with a nice bike ride in the evening with Joanne. Now I can sweat it up and not worry about the line.

100 days (well it will be 99 since I go on Wednesdays) just two weeks away.

T + 50

I realize the blog entries have slowed down and hopefully that's a sign that life is trending back towards normal.  Today marks day 50 past the transplant and everything seems to be headed in a positive direction.  My visits to the clinic have been dropped from three to twice weekly and each one continues to show good results.  My restrictions on driving, restaurant food, and large crowds are still in place and I expect them to remain through six months due to the immune suppression drugs I'm taking to keep the transplant in check.  My fatigue level is improving such that I only need a nap 1-2 per week now verses every day.  I've been able to exercise more with bike rides and some basic stretch and strength exercises.

I've been talking to another guy at the clinic with the same diagnosis as me and approximately the same age.  He's at day 112 and was getting his central line removed.  That puts me around the start of October to get mine removed.  That will be a great step forward as it's still uncomfortable to sleep on the leads at night and I will be able to get back to the tennis court.  Other than that and dropping to one visit per week and having another biopsy (fun), there's technically no other big changes at 100 days which was a little disappointing to me.  It seems more that 180 days is the big mark as that is when they can remove many of the drugs (I'm still on 9-10 different meds) and really allow you some additional freedoms.

As for the non-medical life, we're going to back up and move back to Vero at the end of this week.  The kids start school soon and we're already missing soccer practices.  It will be good to get back to our house and see the ocean again.  Joanne is really looking forward to it as she can return to Crossfit and start seeing a few patients.  The girls are looking forward to not having to share a room any longer - the charm has apparently wore off.  And Tyler will have his refereeing job starting back up.

So full steam ahead for now!

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.

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