Month: September 2018

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.

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.