Category: Uncategorized

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!

Medically things seem to be going well. I received some blood today since my hemoglobin was low.

I am still feeling fatigued throughout the day but managed to get in several walks. I am also trying to add more solid food to my diet, besides just Gatorade or ginger ale. When you are fatigued and your stomach does not feel well you don’t feel very motivated to work on anything. I sit in my chair, watch videos, then nap like it was economics class in college.

I ate some solid food for dinner and had a nice shower. After retiring to bed, I sat-up, leaned over, and vomited. Not my favorite bedtime ritual.

Yesterday was a low energy day so I did not do much. I felt tired and my stomach is still recovering. Medically things are on track and appear to be going well. Today I was mostly glued to the screen: either watching the World Cup, videos on Hulu, or tracking my daughter’s softball games on GameChanger.

I did get some walking in for the day, but did not each much at all.

Sunday was a quiet day as well. Some walks, screen time, and naps in the chair.    My habit is to only use the bed to sleep in. It is very easy just to spend all day laying in bed, which certainly does not help recovery. My platelet count was low so I received a platelet infusion. This is to be expected and I will receive infusions when I cross the minimum thresholds. Going to bed early tonight.

I tried eating some solid food for breakfast but still have been experiencing some stomach issues.  I just tried to stay hydrated during the day. World Cup action was on again so got to watch some good games as a distraction. I also fit in a short walk.

Some representatives from the local churches hospital ministry came and presented a blessing which was greatly appreciated.

The transplant procedure was fairly straightforward. I was premedicated with Benadryl. A syringe with the new cells was brought in and injected into my IV line.  The time of my rebirth was 6:33 PM EST.  I was closely watched for any adverse effects and there were none. The Benadryl made me drowsy so I ended up sleeping the rest of the evening. No wild parties tonight.

No chemotherapy today since today is a rest day (hurrah)! Still not 100% in the stomach area but the meds are doing a good job of keeping things at bay. I ate some solid food for breakfast but took it easy on the coffee due to its acidity.

I finished my first book (The Apache Wars…) , so on to the next one. I have a list developed but if you have any recommendations I will take a look. The only constraint is that they are available in Kindle format.

The occupational therapist stopped by with some theraband exercise sheets. She seemed pleased that I completed the puzzle sheets she gave to me last week. Gold star for me.

A couple of questions have been asked about visiting. For the most part I can receive visitors, unless of course the medical staff is checking it on me which usually does not take too long. To find details on the MSK visitors policy please check here . The important thing for visitors is that your are healthy. And, even so, you will need to wear a mask and gloves due to my lack of immunity. The general plan for me is for a 4-6 week hospital stay (rm M718), then I will move to a hospital-sponsored apartment about 8 blocks away for an additional two months or so. They want you close in case you fever and need to treat you immediately.

Tomorrow is the big day – my new birthday (which is scheduled for 5:00 PM EST).

Happy 4th of July, everyone!

The release of pyrotechnics within the hospital is not allowed, for good reason.  My window view points to the East River, so I might be able to see something outside this evening.

I slept for a long time last night due to all the chemo. Today I received the same type of chemotherapy and thankfully the reactions were much milder than the first time. My stomach is still a little off, but no fevers or chills today.

Today I got some walking in, read, and worked on emails. I did not eat much food, just tiny portions due to my stomach. They even had a special 4th of July menu here. I did grab a selection or two, but tried not to overdue it since I did not want to see what I ate for a second time.

Thanks again for the support emails. I really appreciate those!

Tomorrow is a rest day. I will also find out the exact time of the transplant for this coming Friday.

The morning started out OK with some nausea, but it got rougher with the introduction of more chemo. The new chemotherapy brought on chills, then some fever. Nausea still continued and I did not do much for the whole day. They do have meds to take the edge of the nausea, which does help some. I have barely eaten anything over the past two days. This morning, though, I was able to drink some fluids and a container of Ensure.  I primarily tried to sleep as much as I could.

Tomorrow is the second dose of the same stuff. They told me that the second dose is not quite as bad as the first one. I guess we will see.

 

The nausea continues so I slept in as much as I could. I did not eat much for breakfast and lunch, but was able to eat some applesauce and dry toast for dinner, washed down with some ginger ale. Ideally this feeling should dissipate by tomorrow.

The family stopped by to visit before they left for home. A couple of pics with the girls.

Well with the new drugs the nausea kicked in. I did not eat much during the day. Just nibbled on some crackers and tried to take in some fluids. They did give me an anti-nausea med that helps take the edge away, but you still don’t feel 100%.

World Cup action was on the TV list for today. Two games that went down to penalty kicks. That does not happen very often,

I did walk briefly just to move for a little. Just one mile of walking for today. My family visited in the evening on their way back from a relative’s wedding in Rhode Island. It was good to see them, but I was in a slight state of nausea so I was not the most engaging.  Visitors also need to wear a mask and gloves, just like the medical staff. They plan on stopping by tomorrow before departing for home.

Today was the day to switch chemotherapy drugs. One of the new ones has a tendency to create mouth sores, so I had to chew on ice chips for 90 minutes during the application. So far none have appeared yet, but we will see how tomorrow goes. No other adverse side effects at this time, but my stomach did feel a little off. I was able to eat all my meals.

More hallway walking today. I did discover that the long length of the floor hallway is 234 tiles long and 8 tiles wide. Perhaps tomorrow I will count the ceiling tiles. I was walking in my socks when I was politely asked to put shoes on by the staff since the sound of my almost bare heel strikes on the tile was quite noticeable.  Wanting to be a good patient (and neighbor) I quickly put my shoes on and continued my walk. And, I have to admit, much more quietly.

World Cup action started again today and I watched both games. I think the expected teams won. Now that it is single elimination you can see the intensity of the play increase. Looking forward to the rest of the tournament.

Today was a fairly routine day. The last day of the first regiment of chemotherapy. Tomorrow we switch to the next set of drugs.

The evening walk was quite crowded.  Four patients walking the hallway, with three pushing IV towers. Include medical staff going about their daily duties and family visitors and you definitely have to slow down your pace so you don’t clock someone going around a turn. I am happy to report that there were no incidents tonight.

A bit about the background graphic for this site – the railroad spike runner. Awhile back a group of us trained to compete at Ironman Lake Placid. At a party sometime after the race one of my friends presented each of us with this statue (thank you, Doug). It has been one of my favorite pieces and I thought it symbolic of the journey ahead.

The chemotherapy regiment continues and I have not experienced any adverse side effects so far. The team is tailoring the dosage in order to maximize its effectiveness. The current medication will be applied for one more day, then I will switch to another one.

Today was the final day for World Cup match play.  I don’t really have a favorite in the finals and usually root for the underdog. I was hoping Germany would reach the finals but unfortunately they did not make it this time. Looking forward to watching the bracket play starting on Saturday.

Today I fit in two sessions of two mile walks in the hallway. I think after a couple of days I will know how many tiles lay along the length and width of each section. Once my port completely heals I will try some upper body exercises as well.

During my last lengthy hospital stay I read on average a book a week. I am off to a slower start this time (hey, its World Cup time) but here is what I have in the queue at this point:

• The Apache Wars: The Hunt for Geronimo, the Apache Kid, and the Captive Boy Who Started the Longest War in American History by Paul Andrew Hutton
• The Way to Love: Meditations for Life by Anthony De Mello
• Merrill’s Marauders by Gavin Mortimer

I also have a homework assignment from the occupational therapist consisting of puzzles and other mental challenges. They encourage patients to keep their mental acuity sharp as they undergo the drug regime. Hmm, name a plant that begins with the letter “p”…

 

 

Chemotherapy has begun. My IV tower is my constant companion for the next week or so, providing fluids, various medications, and chemotherapy. For those not familiar with the stem cell transplant process, the basic approach is described here.

The IV tower does have a battery so I get to push it around when I walk. Here on the seventh floor the hallway is about 14 laps for one mile. Today I walked about two miles, using my Garmin Vivosport to keep track of the distance. I thought it worthwhile to get a fitness tracker for this stay in order to help me keep moving when I don’t feel like moving.

 

 

 

By the way, my mailing address here at MSK is:

• Memorial Sloan Kettering Cancer Center
• George Hluck, room M-718
• 1275 York Avenue
• New York, NY 10065

Thanks to everyone for the notes of support and encouragement. I greatly appreciate it!

My travel to MSK was uneventful. I was lucky to get a seat on our company shuttle from Corning, NY which made the travel much easier.  MSK for stem cell transplants is located at 1275 York Ave in NYC, so it was about a 20 minute walk from the shuttle drop off to the hospital.

Upon arrival at MSK I checked into the day surgical department for a Hickman catheter procedure. The catheter will be used by the medical staff to administer chemotherapy, draw blood, and transfuse blood. It consists of three lumens surgically placed into the upper right side of my chest. The surgeon placed the catheter without any issues, and afterwards I checked into the room where I will be staying for a month or so. I was lucky to get a room on the recently renovated seventh floor, in room 718.  The room is well-equipped with its own bathroom, cable television, Wi-Fi and a window view. No roommates for us immunity-compromised patients.

I packed the essentials for a lengthy stay based upon my previous hospital experiences. Living in a hospital room for an extended period of time is like living on a space ship since you are somewhat constrained to a single room. I am allowed to walk the hallway for exercise, but must wear mask and gloves. A proper mental outlook is critical, and it helps to have items that help you keep busy. I always pack my iPad Pro, iPhone, Kindle and journal as  a minimum.

The staff here is knowledgeable, professional, and friendly. Even the food is pretty good. I think folks here try hard to ensure patients are comfortable and well cared for.

Chemotherapy starts tomorrow.

Hello, everyone. I was diagnosed with acute myeloid leukemia (AML) in December 2017. Due to my current situation I require a stem cell transplant, which I will undergo at Memorial Sloan Kettering (MSK) in NYC.

The transplant journey begins with my admission to MSK on Tuesday, 26 Jun. I will need to spend at least 3 months in NYC for the treatment and initial recovery, with at least a full year required for complete recovery.  Not being a social media person, I thought I would start a  blog to post progress so folks have somewhere to check for updates.

Feel free to comment on posts, etc. I will try to frequently update this blog.  To comment on a post, click on the post title and a comment form should appear on the bottom of the page.

By the way, the countdown in the post title refers to the day the transplant will occur.