Month: July 2018

Today marks one quarter of the way to the 100 day milestone. According to the standard plan only 75 more days here before I get to go home. I had a blood draw today. Counts are fluctuating as expected but everything is considered normal. I am experiencing some chemo side effects such as some minor rashes, but that will go away eventually.

We did swing by the hospital seventh floor in order to pick up some held mail fo me. One of the items required for discharge is a medical alert tag that you wear that specifies the type of blood that can be infused if you get into an accident or something. My tag was delivered so now I have that in hand.

After my appointment my brother and I went on a destination walk to the Orvis shop. It was a healthy walk and of course I had to wear a mask, but I kept my hands in my pockets in order not to wear the gloves and sweat an additional bucket. I am not a fly fisherman, but it was good just to go somewhere and look at outdoor items. We did discover that Orvis hosted fly fishing classes in Central Park so perhaps that is something I can take advantage of in the future.

Today was a relatively quiet day. We got sucked into watching the Life Below Zero marathon on the National Geographic channel. It was rather interesting watching how people deal with the challenges of the isolation and environment in Northern Alaska. Certainly a different lifestyle than living in the Upper East Side of Manhattan.

We continue to try out different restaurant take-outs and add those to our reference library. BBQ style was the latest to add to the list. My stomach has tolerated everything well so far. I do avoid large amounts of spiciness at this time just to be on the safe side.

I am a Game of Thrones fan and am waiting for the next season to be released. There is a particular segment from the show that I enjoy.  Obviously, I don’t think that death is the only god, but I like the response and it is what I tell myself each morning: Not today, cancer. Not today.

Today we returned to Central Park for a nice walk. Central Park is significantly more crowded on the weekends when compared to a weeknight evening. Since it was sunny I had to wear long pants, long sleeve shirt, and a hat besides my usual mask and gloves. It is important to avoid too much sun since that could trigger an immune response with adverse effects. I think I was the only person in the whole park who was dressed that way. Does anyone remember those Invisible Man movies where he is completely covered so that no one can tell he is invisible and he has shape? I sort of felt that way.

 

 

 

 

 

 

 

 

 

 

We watched some of the games being played at the park. Several slow pitch softball games were in progress, along with many other activities. It was good to walk around and feel a little bit normal. When I returned to the apartment and removed my gloves sweat literally dripped off my fingers. My hands felt like I had gone swimming. I will probably try to avoid the warmer temperatures in the future or walk more in the later evening.

Today was field trip day. After masking up we took a Lyft ride down to SoHo to visit the Victorinox store. I have a particular fondness for Swiss Army knifes (SAK) and have a small collection of them. It might have started a long time ago when I was in Ranger school and brought a SAK with me. It proved more useful to me than some of the Rambo knives carried by some folks. I ended up picking up an item or two, to include one small knife as a memento for my stay  here in NYC.

 

 

 

 

 

 

 

 

 

 

We walked to REI as well before getting a Lyft ride back to the apartment. It was good to go out and stretch the legs some. No major changes on the medical side.  I continue to take medications twice daily and it will be interesting to see where I stand in a couple of days.

We continue to try out new restaurants for take-out options. My brother has documented and mapped out restaurants that we have tried so that future caregivers have a reference.

My counts were checked on Thursday and they are progressing as expected. I have not encountered any other issues so far. The apartment is only 8 short blocks from the hospital so it is easy to get there for appointments. Currently I am scheduled to visit the hospital twice a week for testing while we work through this recovery period.

There are plenty of grocery stores and restaurants nearby for meal-planning. I only get take-out from a restaurant and we ensure it is fully-cooked and follows the guidelines provided to us.

I still get a metallic after-taste after I eat anything, which is a side effect of the chemotherapy. It is just an annoyance, but it detracts from post-meal satisfaction. I usually just take a mint afterwards to help eliminate that taste.

On Friday the weather was iffy so I decided that instead of a walk I would just go up and down the stairwell a couple of times. This building has seven floors, so you can get a decent workout in a short amount of time.

It is funny how we are creatures of habit. Even though I have no hair on head, I continually reach for the shampoo when taking a shower.

 

Fairly low key day today. My brother went to purchase some items to make apartment living more comfortable. He also picks up any take-out we order since I won’t risk eating at a restaurant for awhile.

I did confirm today that I am out of shape. I set up my Monkii bars in the apartment and it quickly became clear to me that I lost a lot of muscle strength in the past month. No worries, I have time to rebuild.

The guest facility was comfortable and it felt good sleeping in a non-hospital bed. I finally returned to coffee drinking this morning and it was good. Generally speaking I feel good, but it is a little strange not seeing my numbers since I was accustomed to seeing them after the daily blood draws. My next appointment for tests are on Thursday,

Today we moved from the guest facility to the 75th St apartments. Although not in our final apartment, which we will move into on Thursday, we are at least in the same building. Here is my updated mailing address:

• George Hluck
• 411 East 75th St, Apt 5A
• New York, NY 10021

In the evening we walked in Central Park. It was good to get out and get some exercise. There is definitely a difference between walking on a smooth hospital floor and the variable terrain of the city and the park.

Today was a good day. I was finally discharged from the hospital. My counts are in good shape. I did receive a growth factor shot the day before which helped, but I met the criteria for discharge. My brother arrived to fulfill the caregiver role. We left the hospital a little after noon after working through the discharge process. It felt good to be outside and breathe fresh air after being inside the hospital for about a month. I restrained myself from shouting “Freedom!” when stepping outside, but I guess for NYC that would not raise any eyebrows.

 

 

 

 

 

 

 

 

 

 

I extend my greatest appreciation to the medical staff at MSK. They have been superb. I attribute my success so far to their expertise, as well as to all of your support. We still have a ways to go, but are off to a good start.

My immunity is still immature so I have to follow certain precautions. For example, I must wear mask and gloves in crowded areas. After my immune system matures the constraints will be relaxed. My next appointment at the hospital is this Thursday, when they will check my counts and see if I need anything.

We walked to the guest facility where we will be staying until we move to the apartment. We did find out in the evening that the apartment is available tomorrow so we will move there tomorrow morning.

A fairly quiet day today. My counts have fluctuated, but that is to be expected. Some drop, others rise, but my overall status is good. I am still on track for a Monday discharge.

Some friends stopped by to visit which is always a welcome addition to the day (thanks, Dave and Patty).

While walking in the hallway another patient asked me when was my birthday. I had to stop and think about it for a second, since he was referring to my transplant day and not my original birthday. He had his transplant the day prior and I think he was trying to get an idea of what it would be like for him two weeks from now. I hope he progresses as well as I have.

Today my port was removed in preparation for discharge on Monday.  It was much simpler to remove than to insert (although the anesthesia they gave me when they inserted it felt pretty good). Just a snip of a stitch and a couple of hard tugs and it was out. Now I am free from the IV tower and need not wheel it around. I do have an IV installed on my left arm in case I need an infusion before I depart.

Today I also had a relative visit which helped break up the day. Thanks for stopping by, Chris! I also spoke to some old Army friends (Carl, Rick and Al) who I served with when I was stationed in which was then known as West Berlin, as members of the now-deactivated Berlin Brigade.  I had not spoken to them in years and it was good to reconnect with the old crew.

Logistically I just have one complication. When I leave here I will spend a couple of days at the NY Presbyterian medical guest facility since my reservation for the 75th St apartment does not start until Thursday. They could not get me in earlier, but no problem since the guest facility is very close and has good accomodations. I won’t have a new mailing addressed published until the end of the week.

Thanks again everybody for all the notes of support that you have sent! They certainly help me in maintaining good spirits as I recover.

 

 

Counts continue to rise, reaching new heights today. Over the next couple of days they could stabilize and drop some. It is hard to predict. But, bottom line, the progress is good and we are planning for a Monday discharge. I will be soon on to the next phase of the recovery process.

My address will of course change and I will post that as soon as I get it. For now I would recommend holding off on mailing anything until I get settled into the new location. If by chance you did mail something do not worry. I have already spoke to the hospital staff on the possibility of outstanding mail and they should hold it for me.

As part of my recovery constraints I am not allowed any alcohol, and unfortunately confirmed today that NA beer is included as well. I guess it will be awhile before I can enjoy a good pint (or even a fake one).

While here I do try to help out with home activities. For my extended stay I purchased an iPad Pro 12.9’’ with Apple Pencil and Smart Keyboard. It is definitely useful to have some kind of computing device during this lenghty stay (another excuse to purchase nice electronics). With IOS 11 and cloud services you can get a lot done. So far I am happy with how the iPad has been working out. The larger screen size is a plus for me. There is WiFi here in the hospital that is robust enough to support streaming services such as NetFlix or Amazon. That device set-up gets a thumbs-up from me.

 

 

My counts are just cruising along. Today my white blood count was 3.0, five times that of the day before. The transplanted cells are apparently very industrious. Other counts are moving forward as well.

We are targeting this coming Monday as my hospital discharge date since I am doing well. After leaving the hospital I will need to stay in NYC for a couple of more months. There are living quarters options associated with the hospital. I will stay in an apartment on 75th St that is walking distance from the hospital.

One of the requirements of living outside of the hospital is the presence of a caregiver. This is a requirement in case assistance is needed due to fevers or some other medical issue. I will have family and friend caregivers rotate through the time I will be here. Currently I am working on that scheduling. My brother gets to start first.

There are  many other constraints that I will need to follow since my immunity is still developing. I have been given a document that lists all the restrictions. They all make sense, and as I make progress the constraints will eventually be relaxed. For now I am off to a good start and am looking forward to discharge.

We continue to move forward. My white blood count tripled today to 0.6! There is discussion of an earlier discharge if we continue to make progress. Once discharged from here I would reside in  a local apartment to stay close to the hospital for a couple of months. There is still a long way to go to completely recover from a stem cell transplant.

I continue to expand what I eat. Appetite and stomach still improving. Not completely back to normal, but getting closer. I still miss my coffee, since I have been avoiding that due to its acidity. Maybe in the next couple of days I will try a cup.

Today I received a light-hearted t-shirt from my brother.

 

 

 

 

 

 

 

 

Normally I am a pretty calm person, but awhile back I was consumed with Ironman triathlons and immersed myself into the training and racing. Although I am sure I beat up some of my body with all that training, I can’t but help think it built a foundation for me to best weather this current challenge.

Today was a significant milestone. My white blood count went from 0 to 0.2. This means the transplanted cells have engrafted and I am now making stuff! Over the course of the next several days we expect that count to greatly increase. Thank you everyone for your notes of encouragement and prayers. I am certain that they helped.

Other than that the day was fairly routine. Exercise, trying to eat more solid foods. My stomach and appetite seem to be slowly coming back. No other adverse side effects have appeared.

Medically things continue to track well. So far I have experienced few side effects, which is very fortunate. You can experience a wide range of side effects with a stem cell transplant, and so far my experience has been much smoother than many others. I did receive another platelet infusion today, even though I received one the day before. Sometimes platelets can be fussy and don’t last very long.

Of course I watched the World Cup today. It was a good match but in my opinion the luck was on the French side. Nevertheless, both teams played hard and it was fun to watch.  Earlier I had to watch the Tour, since the stage included many sections of cobblestones which could wreak havoc with the riders. I was surprised to see a large number of sporting events on ESPN yesterday. There was at least the Tour, softball, track and even international lacrosse. Who knew they played lacrosse internationally?

 

 

Things continue to track well. The next milestone is to see an increase in some of my blood counts. I received another GCSF shot today. Apparently I will continue to receive them until my counts reach a certain level.  My platelets were low today so I did receive a platelet infusion.

I was pleasantly surprised by having some family visit today. Thank you for stopping by Bill and Eileen!

World Cup action returned today with the 3rd place match. Belgium got this one and it seemed like they were the better team today. I also forgot that the Tour de France is going on as well. It may seem boring to some, but I enjoy watching that race. I don’t watch much cable here (yet), but they do have a good selection.

Medically things continue to go well. I am eating solid food each meal, although I look for bland items in order to avoid possible stomach upset. I was also taken off one of the antibiotics since I have not experienced any fevers.

I started exercising using the theraband, which I just attach to the bathroom door handle and use it primarily for arm pull-downs, like we use to do for cross-country ski training.

In the evening I received a shot of GCSF, which is a protein that stimulates the bone marrow to create stem cells. Do you recall what they did to Steve Rogers when they transformed him to Captain America? Well, it was nothing like that. Just a simple shot to the arm in order to stimulate the body. Sometimes people experience side effects from the shot such as bone pain, but so far no side effects for me.

Well the appetite is coming back but the hair is leaving. I noticed that my hair was falling off so I asked one of the techs for a close haircut. It is a fair trade – having an appetite and no nausea is much better. The staff even took me off of one of the ant-nausea meds since it did not seem I needed it any more.

I was also transitioned from the IV to pill form for one of the antibiotics. This is good since it reduces the reliance of the IV tower. No infusions required today for blood or platelets.

I started some exercises with the therabands today and they felt fine, so I will be increasing the volume and intensity so I my upper body does not get too wimpy.

I continue to make progress and was able eat some solid food at each meal. The fatigue seems to be decreasing and medically everything is on track. I did receive a blood infusion today since my hemoglobin was low. Sometime in the near future I will share how many total infusions I received since I was diagnosed with AML (hint – a lot).

It was nice to have a friend from Corning visit today. They helped us out by bringing mail and magazines (thanks, Margot). It certainly helps to break up the day.

I watched the World Cup today. It was a well fought match but England lost to Croatia 1-2. I thought the game was exciting and look forward to the final on Sunday.

I exercised as normal, completing several miles in the hallways. In a couple of days I will try some upper body exercises with a theraband. I wanted to give the port in my chest some time to heal before I tried anything. The physical therapists here have provided some exercises to try out.

A couple of days ago I watched a season of the show “Alone”, where ten people are sent into the wilderness to survive on their own. They are only allowed to bring ten items with them. The goal is to last as long as you can and the last remaining survivor is awarded a large cash award. What amazed me about the show was the mental aspect. The mental challenge of being alone and away from their families wore on them just as much as the physical challenges of cold and hunger. It is a good lesson in preparation for any arduous tasking. A situation best prepared by adopting the traits of a running railroad spike.

Well, fatigue continues but I am working through it. Eating more solid food now. I am just very careful with what I try. Food such as oatmeal, chicken consommé, and rice seem to work.

I needed another platelet infusion today and that is to be expected since my body is not making them yet. I did get some free time from my IV tower when they replaced the lines, which is normally done on a weekly basis. I went for a walk during that time and it felt refreshing not to have to continually push that device. The small things in life that we appreciate…

Thanks again to all those who donate blood. Patients in my condition tend to need a lot of it, and I greatly appreciate people’s efforts in taking the time and providing donations.

World Cup action provided a welcome distraction, with France beating Belgium 1-0. I thought they played a good game. I am looking forward to tomorrow’s game and will be rooting for England.  Unfortunately I won’t have the ability to watch the game at a local pub, nor enjoy a pint or two, so I will make do with ginger ale.

Also, thanks for all the book recommendations and offers of support!