The Next Challenge

Yesterday was caregiver switch day. My thanks to Phil who just finished his last shift. Friend Jerry arrived today to take over caregiver duties. It has been a couple of days since my last set of shots and my stomach is feeling better.

Today my counts were checked and they are as expected. We did a little shopping after my appointments since I needed to get a new pair of running shoes. I brought a pair of cross training shoes with me but they did not appear to provide as much support as my aged body needed. So, I picked up a pair of nice Brooks running shoes at a local running store. I bet I was the sales person’s first customer who wore mask and gloves.

Time sneaks up on you. I had not blogged anything in a couple of days so I need to work on this. Yesterday I finished my maintenance protocol. Each day for five days I received two small shots of azacitidine. We rotated through several spots to receive the shot since you do get sore where the shot was done. The medication also upset my stomach so I took some anti-nausea meds, but my appetite was not the best this past week. I am glad to be done for now and the next cycle won’t occur until October.

It was great watching the Army-Hawaii game. Army played very well and beat Hawaii. It looks like Army’s play is improving but they still receive more penalties than I like seeing. We have also been closely following Hurricane Florence since we have relatives who live the Carolinas. So far they are in good shape but there is more rain to come.

The weather was pleasant here so we got a good walk in the evening. During the weekend Central Park is quite busy with people walking, running, riding bikes, etc. I imagine it is a good break from apartment living. When I return home I also will be looking forward to being outside, as well as being able to help out with home activities. The kids have started school and my wife Laura has her hands full.

Today was caregiver switch day. My brother left for home after spending two weeks with me. Thanks again, John! Phil came back for another week with me.

Today I started a maintenance protocol of five days of daily azacitidine shots. This will be repeated every twenty-eight days and helps prevent relapses. So far no major side effects from the first shot besides some irritation at the shot location and some nausea (which I have meds for).

It was a fairly quiet weekend.  On Saturday we watched college football and were glad to see that Army beat Liberty at home. We also took a nice walk around the reservoir in Central Park. On Sunday the Fifth Avenue Mile was held in NYC. We found out about it while channel surfing. If I had planned better I probably would have gone to watch it. It is not often you get to see up-close elite athletes running the mile in under 4 minutes. Sunday was also opening day for pro football. Finally the Cleveland Browns did not lose their home opener (but they did not win either).

I had my second blood draw for the week and counts are still doing well. If things continue as is then it looks like I can return home some time the week of 15 Oct. Most of the follow-on procedures can be locally handled but I will be returning to MSK for biopsies and check-ups. I still have a good amount time to spend here in NYC, but it feels good to talk about returning home.

I had the first bi-weekly blood draw today. Counts continue to look good. All my counts are now in the normal range except for hemoglobin.  Of course they can still fluctuate, but they continue to trend in the right direction.  Initial result from the biopsy is good, but am still waiting for the details.

Now that I am well past the halfway mark it is time to start planning discharge timing. I see my transplant doctor on Thursday so we may be able to draft some plans subject to my biopsy results.

I had not posted in a couple of days – it was a relatively quite long weekend here. Before the weekend I had a blood draw and biopsy. Blood draw counts were as expected but it will take a couple of days to get the biopsy results. On Saturday the weather was good for walking so we took a long walk down to SoHo and checked out a couple of shops. On the way down we passed the United Nations building area. I had never seen that part of the city before.

College football started this past weekend. We watched a couple of games, to include Army’s loss to Duke. Army had a great season last year but it looks like they are off to a slow start this year.

Another blood draw today. All my relevant counts increased, which was great to see. My white blood and neutrophil counts remained in the normal range, while my hemoglobin and platelets are just shy of normal. They may fluctuate in the future, but the trend so far is positive. I am scheduled for another bone marrow biopsy this week, so that should provide updated detailed information on my progress. I have lost track on how many biopsies I have received so far, and there will be more in the future.

Today Phil finished his week of caregiving and returned home. Thank you so much Phil for your help! My brother arrived soon afterwards for his second tour with me. It has worked out quite nicely to stay in the 75th St apartments as opposed to the lodging at Hope Lodge. We are in a residential area, close to many shops and restaurants, and are within walking distance of the hospital. The apartment itself has enough room to give each of us some space.

It appears the hot temperatures will be returning to NYC this week for a couple of days, but it should cool off later in the week. I continue with my exercising to regain strength, but tweaked a muscle in my left shoulder so will have to take it easy for the next several days. I guess I am not as flexible as I used to be. I also started some small sets of Tabata intervals to build cardio and will work to increase the duration of those workouts.

Well, today marks the halfway point to the 100 day milestone. I have experienced no serious side effects. I am hoping this trend continues for the next 50 days – remember, boring is good in this situation.

The past couple of days have been fairly routine. Another count check today and the numbers look good. I continue to maintain precautions to prevent exposure to illnesses and will need to do so for awhile. My counts are good, but my immunity is that of a newborn baby and is still immature.

We continue to watch the Little League World Series. Unfortunately New York has been eliminated. The championship games will be played this weekend and they should be good games to watch.

Today was caregiver switch day. My friend Jerry departed and our relative Phil assumed caregiver responsibilities. Thanks to Jerry for doing a great job! A lesson learned for the city – rental cars are much harder to come by on the weekend than during the week. My condition remains more or less the same. No more side effects and the counts are as expected.

We walked along the river today. One of the advantages of staying in this apartment is that we are relatively close to Central Park and the East River, so we have some options for different walking routes.

Did everyone catch the Sharknado movie marathon on the SyFy channel? We watched a little until our interest quickly waned. It has been awhile since I have seen movies of such caliber.

This morning I had breakfast with the family before they departed. We had a great visit and it was good to see everyone after such a lengthy period of time. In the afternoon I had my blood draw. My counts continue to reside in the expected ranges and so far I have not experienced any other adverse side effects. It has been this way for awhile, and in this situation boring is good. I have increased the duration of my workouts in order to rebuild my strength and range of motion.

The Little League World Series started today in Williamsport, PA so we will have that on the TV for the next ten days. The Mid-Atlantic region is represented by a team from Staten Island, NY.

Yesterday my family flew in for a visit and to celebrate my older daughter’s birthday. It has been over a month since the kids were able to visit, so it was great seeing everyone. They were able to stay at the Helmsley guest facility so they were just a couple of blocks away.

After the family completed some shopping we had dinner and a movie together. We also ordered a nice cake from a local bakery several blocks from the apartment. Now we have a sixteen year old who is eager to learn how to drive. It was nice spending some time with the family.

I had another appointment today. My counts continue to look good. Some vary, which is to be expected, and some continue to steadily rise. We also received additional information from the bone marrow biopsy. My body has responded well to the transplant. My stem cells at this time are 100% donor. This is great news!

Today’s destination walk targeted some of the nearby bicycle stores. They were small, but it was interesting to check out some of the local stores and what they have to offer. I have a healthy inventory of bikes at home and look forward to returning to riding when I get back home.

A lab visit confirmed that my counts are progressing well.  I typically have two lab visits a week and so far the progress has been steady. My biopsy results are good and we will learn more about how much of my cells are donor as they complete the analysis. My rash is receding and it seems to be responding well to topical treatment. Weight and other vitals are consistent.

We went out earlier for a walk today due to the mid-day heat. It is always good to stretch out the legs. We explored a different section of Central Park today which helps keep the walks interesting.

The metallic after-taste in my mouth has started to subside, so meals have become a little more satisfying. I am still dealing with an annoying rash, but that seems to be subsiding as well. No other side effects have popped up so far.

There is always some sporting event to watch on TV. At this time the Little Leagure regional finals are being held. The winners of the eight US regions go to the Little League World Series in Williamsport to compete against each other, as well as eight international teams. The Little League World Series begins on 16 August and spans about ten days. The Mid-Atlantic region, which is still being contested, has a NY team from Staten Island in the final this coming Saturday.

Good news from last week’s bone marrow biopsy! Initial results indicate that there are no abnormal blasts, which is a good thing.  We will have to wait for more information on how much of the transplanted cells my body has adopted. But, for now, that is an excellent indicator that things are progressing well. My counts are stable as well, residing in the expected ranges. Looking back at pre-transplant count levels I am now recovering twice as fast as compared to previous post-chemo sessions.

Another extremely warm day here, so just walked the stairs a couple of times to get a short workout in. To help keep me busy I am taking a course on Coursera.org. They have quite a wide offering of on-line courses available.

Today a heat advisory and air quality alert was in place, so we did not go out for a walk. Instead I just completed a Monkii bar workout. If you have never tried a suspension trainer, I would recommend that you do. They are very versatile and there are several good options available.

Given the level and stability of my counts I don’t expect any more transfusions at this time. Looking back I have received 52 transfusions; 27 for platelets and 25 for red blood. So, for those who have donated blood you have my utmost gratitude. A potential side effect of the transplant is that my blood type may change to that of my donor. That does to always happen, but it will be interesting to see if that does happen here in the next year. All part of being reborn.