The Next Challenge

Last week I completed my maintenance shot cycle. Still no major side effects which is always good. I am still waiting for the detailed results of my last biopsy. I probably won’t hear anything for at least another week.

During this time of the year I reflect daily upon the fact that one year ago I was in the hospital recovering from my first chemotherapy session after being diagnosed. During that time I spent approximately 5 weeks in the hospital, confined to the same hospital room and floor. For someone who enjoys the outdoors that required some mental endurance. You gotta be appreciative and grateful for the little things in life.

The initial results of my bone marrow biopsy from last week are good – no signs of leukemia. It will take more time to receive detailed results such as what percent donor I am, etc. I am still amazed as to how much better I feel now as compared to a year ago.

This week I started my fifth maintenance cycle of azaciditine shots. By now the side effects are minimal. Even the shot locations don’t seem as sore as before. My EBV level continues to be negligible as well.

Well, it looks like I just crossed into 6 months post-transplant. Things are fairly quiet. My EBV level continued to stay negligible. This week I travel back to Sloan for a check-up and biopsy.

Happy New Year, everyone! Here we are wishing for a much better year than last.

Today is Christmas Eve. It has been almost a year since I was first diagnosed. Last year I checked into the hospital on 28 Dec for my first chemotherapy session. It was a shock to my family and myself, but we have all persevered and here we are almost a year later, still moving forward. Not everyone has such luck. Well, certainly I would not consider it lucky to have been diagnosed with AML, but we battled through with a lot of support from many people and I am still here.

I wish everyone a Merry Christmas and Happy New Year! I hope everyone gets to take some time off and spend it with family.

By the way, how about that Army-Houston game? It was a good one to watch (for Army fans, that is).

It is now been more than 5 months since my transplant. So far things are still going well. I received several infusions of Rituxin and my EBV level has dropped back down to negligible, so no more are required. My EBV level will be monitored on a weekly basis so in case it increases again it can be addressed. Last week I met with my transplant doctor at MSK and it was fairly routine. I will have my next biopsy done in the first week of January.

I recently celebrated a birthday (I won’t say which one since it is a large number). Nothing fancy, just a low key celebration at home with the family. I have to feel thankful that I am here to celebrate it. And, just like everyone else, we are busy getting ready for the holidays. 

How about that Army-Navy game? I am looking forward to watching Army play Houston in the Armed Forces Bowl this coming weekend.

I got behind and did not post anything last week. Things have been fairly routine except for one area. Last week my  EBV level spiked up, which is a sign that a possible infection may be sneaking up on me. To avoid a possible infection I received an infusion of Rituxin, which is used to treat such situations. The current plan is to receive additional infusions once a week for three more weeks. That will be subject to how the levels change. Currently I feel fine, and these infusions are a standard approach to mitigating this type of potential infection.

This week I started my next maintenance cycle of shots. I will receive two small shots daily for the duration of the work week. I have pretty much gotten use to them, as the side effects seem nominal.

For exercise I decided to focus on indoor rowing for the next month or so. Rowing is a great conditioning exercise and engages all the major muscle groups. I have a Concept 2 rower in the basement and I find it very efficient and effective in getting a good workout. I am getting stronger, but still have a ways to go.

Bad weather threw a monkey wrench into my travel plans last Friday to NYC.  No major impact, since it was a dermatologist follow-up which was rescheduled and I can work with them remotely. We received about a foot of snow here so it was good not to travel. I have a local appointment scheduled for a blood draw just to keep an eye on things. For Thanksgiving I will stay home. It is best I don’t risk contact with crowds, especially those with small children. I encouraged my family to travel so that they can see relatives. I hope everyone has a great Thanksgiving! I know I have many things to be thankful for.

Well, it has been over 4 months now and things are progressing well. I just finished my third maintenance shot routine here locally, and the side effects were minimal. Recent blood draws continue to show good counts. In fact, I think my platelets hit an all time high, but they can be fickle and fluctuate, so it will be interesting to see whether they will stay at that level. So far I have been able to stay healthy and avoid infections. I still stick to all the constraints my doctor provided – an ounce of prevention is worth a pound of cure.

It has been awhile since I have posted anything. Things are fairly routine right now. I have a weekly appointment with my oncologist at Strong, where my blood is drawn and I get a general check-up. This week I will travel back to MSK for a check-up with my transplant doctor.

During the week I help out with home tasks and try to stay healthy. We are approaching the flu season so I have to be especially careful not to catch anything. The family has already received their flu shots but in my condition I cannot get one.

Since the pace of activities have slowed down I am thinking of just posting once a week where I will provide a summary. Most likely every Monday, unless something major pops up. But, boring is good in this situation.

Today I rode on the bike trainer for the first time in a long time. Needless to say I am out of shape and now that I am home I can use our home gym to help me get fit again (that will take some time!). I just need to be careful not to overdo it, since I think my tendons and ligaments have taken a beating from the chemo and meds. Not that age has anything to do with it…

It is now triple digits post-transplant. D+100 is considered an important milestone for stem cell transplant patients since the greatest risk for critical side effects has past. But, as I had mentioned before, my immunity is still immature which will take some time to return to normal. Key for me is to stay healthy and not to be exposed to any illnesses. I have been home for several days now and it really is great. I still have many constraints to work with, but my spaceship world has opened up a little more. Being home also allows me to help out with domestic tasks, relieving the burden on my wife.

My next appointment is with my oncologist at Strong Memorial in Rochester later this week. I still have maintenance shots to coordinate and am not sure whether I have to receive them at Strong or ideally here at the local cancer center. I will also return to MSK in several weeks for a check-in with my transplant doctor.

After my maintenance shot today we rented a car and drove home. The drive back was uneventful once we got past NYC traffic. In my eagerness to depart I  forgot to take a departing photo with me posed in front of the apartment. According to the apartment staff I was the most senior resident at the apartment complex – now it is someone else’s turn to fill that position.

It has been 97 days since my transplant, but I had checked into MSK before then so I had been gone for a total of about 107 days. It is a great feeling to be back home with the family. I will still return to MSK for various appointments, but I will also continue with local treatments through Strong Memorial in Rochester.

So, the first phase of this journey to recovery has been completed. It has been challenging and we are not done yet, but there is always something to be grateful for:

• I am grateful for the wonderful support from family, friends, work colleagues, and others.
• I am grateful for the professionalism, competence, and compassion of all the medical  staff who have cared for me.
• I am grateful for a second chance at life, since there is so much more to accomplish.

 

Today was the fourth day of maintenance shots and I didn’t feel as naseous as I  did during the last cycle. My appetite seems to be getting back to normal, as I seem to be eating larger meals. The blood counts are good – in fact my platelets have reached a new high, and most probably they are at their highest level in the past several years. The initial biopsy results are good, with nothing abnormal detected. I am approved for returning home tomorrow!

However, my immunity is still immature and I need to be very mindful of that. I still have to be very catious about being exposed to any possible illnesses, since my body may not be able to fight them. It will still take some time for my immunity to get back to normal.

Today was caregiver switch day. My brother flew out today (thanks, John!) and my wife Laura drove in for the last week of my stay here. This was also the first day of the second cycle of maintenance shots. I will have to see whether I experience the same side effects of nausea.

The current plan is to depart here after my last shot on Friday afternoon. We are renting a car for a one-way drive back home. I am getting a little cabin fever and I am definitely looking forward to returning home.

Today I had several appointments. Besides the typical blood draw I also had a pulmonary test (for discharge prep) and my monthly bone marrow biopsy. Counts were as expected, so no surprises there. It will take a couple of days to get the initial results of the biopsy, and a week or so to get the molecular studies.

It was a relatively quiet weekend. The typical pattern is some college football viewing on Saturday (Army won!) and NFL on Sunday, surrounded by miscellaneous activities. The Global Citizens Festival was held on Saturday in Central Park where some big-name entertainers performed. We walked through the park on Sunday and noted all the fencing and stage construction that was still being dissasembled. Sunday morning is med assemble time, where I group all the meds I take for the week. These include antibiotics, supplements and protectarants. The liquid antibiotic is a favorite. We refer to it as paint (due to its color, viscosity, and taste). Also, spills do not come out of your pajama pants after washing.

 

Today was another blood draw and the counts are good. We received further analysis on my last biopsy and I am still 100% donor cells.  That is very good to hear. My next biopsy is scheduled for next week and I expect that one to be good as well.

Today was caregiver switch day. My friend Jerry left, completing his last tour (many thanks to Jerry!). My brother John arrived for his third and final turn. There was a little bit of traffic in NYC as it prepares for the upcoming UN meetings with road closures and redirected traffic.

Today was the first blood draw of the week and the counts, as usual, were as expected. Like I said, boring is good.

To help keep myself busy and productive I am taking two on-line courses, one on cybersecurity and the other on data science, topics that I have always been somewhat interested in. They help to keep the mind exercised.

Well, we have now crossed into the next season. I checked into the hospital a few days after summer officially began, and we are now into fall. When you can measure your time using seasons you know you have been somewhere a long time.

I think I am pretty much over the side effects of the maintenance shots. I don’t start the next cycle until the second week of October. As far as overall side effects it is kind of interesting. The hair on my head has not grown back, but the hair on my eyebrows have clearly grown and I do need to shave every other day or so.

It was college football viewing day. Unranked Army played a spectacular football game today against fifth ranked Oklahoma. The game was tied at the end of regular play, but Oklahoma won by a touchdown during overtime, winning the game 28-21. We had to follow the game on-line since no one was broadcasting the game (I think it was on pay-per-view).  I read that the Oklahoma fans gave the Army team a standing ovation when they left the stadium.

I had my second blood draw for this week and counts are as expected. I am now more than three-quarters of the way through my time here. I am looking forward to continued progress and the ability to return home middle of October. I am sure the last days here will seem the longest as we get closer to the projected departure date.

The weather has cooled off somewhat here which makes for pleasant walking. There is always a considerable number of people in Central Park in the evenings, and I enjoy seeing all the folks running and riding bikes. Being an avid cyclist I am always interested in the bikes people are riding, and am hoping I can ride some back home before the weather turns.

We watched theThursday night NFL game where the Browns beat the Jets 21-17. Having grown up south of Cleveland this was some cause for celebration, since the Browns had not won a football game since December of 2016. No doubt there was some exuberant celebration in Cleveland.