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The Main Event – Day 1

Posted by on December 1, 2011

 First Lap Around the Unit

The Main Event – Day 1

First off, in transplant talk it’s really Day minus 6, because there are 6 days of Chemo and a day of rest before the actual stem cell transplant. That day is Day 0 and all the days after that are plus days. I’m a simple guy so I’m happy calling the day I enter the hospital, Day 1 and the day I leave, Day Whatever.

Yesterday was Day 1 in Ronspeak.

Those of you who know me, know that I am not a particularly “lay back and relax” type of guy. My first W-2 wages was when I was 12. I have never been out of work for more than a week. The one time I actually got laid off, I used 5 credit card to start RJ Communications. That was in 1994. I can only remember 2 – 2week vacations, over the years.,,, In short, the thought of being in basically a lock-ward for the better part of a month has been occupying a major part of my mental activity. While the actual physical part of the transplant is quite important, I was much more worried about the psychological aspect of being trapped for an extended period of time. My primary concern was could I bring my laptop and will the hospital have decent WiFi. The 20 times I asked this question to 20 different people connected with the hospital I got the same answer… yes. As soon as it became very clear that the transplant was going to be a reality, I fine tuned my questions including size of the room, did the rooms have windows. Both the laptop and the window were my mental “escapes” from confinement. I was ready, both physically and mentally.

I often wondered what it must be like on that bus ride from the courthouse to the prison that you see in all the movies and various law enforcement shows. I want into the office yesterday for a shortened day. I wanted to ride in with my buddies that I had been riding with for the past 10 years. It wasn’t a “last trip” but the last for a while. I took an early train home by myself and spent the whole ride staring out the window looking landmarks, trees, cars on the parallel highway until I got off the train in my hometown about an hour north of the city.

Early the next morning, my wife, son and I loaded the car and headed to the hospital back in the city. My son was driving so I was able to replay the train ride from the night before. From Westchester, through Yonkers, the Bronx and finally Manhattan. For the first time in years, I didn’t even mind the traffic on the FDR… It gave me a chance to stare out at the East River..

The check-in process was easy enough. Get my wristband, Sign a few more forms and wait for the “Transport Guy” to take us to the 8th floor to the transplant unit. Before turning to the elevator I took one last glance to 67th Street and off we went. The unit looked pretty nice. It was huge with patient rooms on the outside and support area on the inside. When we got to my room, it took about 2 seconds to have my jaw drop to the floor. Do any of you remember that Robin Williams movie Club Paradise? In it, they made up a really nice travel brochure where that stages the rooms to make them look like a holiday paradise. Well, that it the first thing that popped into my mind. Yes, the room has a couch, bed, computer, DVD and window, as promised but it was all jammed into an area smaller then my den. I walked over to the window to see what my view was going to be for the next month and there was a giant vent covering the whole “view” about 30 feet away. My first impulse was to turn around and leave. I am claustrophobic to the point that I can only do open MRIs and have not driven through a tunnel in 20 years. Maybe 6 months on the couch would help figure that one out but Its pretty far down on my “Bucket List”. I resisted the urge and decided to “give it a go”, so to speak

 

I met a host of nurses and doctors in a pretty short period of time. It took about 5 minutes to find out that there was a “List” to get on to get your room moved. I had an instant new mission… to get to the top of that list in a hurry.

My first blood pressure was off the chart. Simple explanation… I just boarded a the MSKCC-855 and we were about to dive on our way to a 30 day patrol. Funny thing is I’ve always been interested in submarines. I interviewed an former U Boat Captain who was teaching at the Naval Academy for a 10th grade term paper and published books, later, on various US Submarines which had been turned into museum around the country. I visited most of them at one point or another. To this day, one of the best books Ive read on submarines was Iron Coffins and the best movie, by far was Das Boat, although Run Silent Run Deep was pretty good too… Enough of that little side trip. The point it, while I love submarines, Id never want to spend 30 days on one. A ship, on the other hand, is also confining but its not the same, you have the whole ocean to stare at and watch the waves, the clouds, the sun and the occasional dolphin or other ship. In theory, I’m on the “list” so I’ll keep you posted how I make out.

Meanwhile, back to the medical mission. The plan was to get a dose of chemo the first night, followed by 5 days of 2 a day chemo(different drugs) followed by a single dose of a final chemo. Infused at the same time as the chemo was a drug to keep my head from spinning and puking (My only request other then a room that looked at something other then a wall). They also mixed in a steroid, which basically masks some of the side effects temporarily (similar to the first rounds of Chemo from the previous months). Anyone who has ever taken steroids knows that they can make you a bit jumpy and do not work well with sleep so the earlier in the day you take them, the better. I finished treatment around 11PM.

One of the side effects of the chemo was headaches. Now I am smart enough to know that the head starts at the neck but if someone says “Headaches” I think of the ears up part of the head. About an hour into it I noticed I was feeling a sensation in my sinuses. It wasn’t bad. I had had it before with other drugs and it always went away after the infusion was over. I was sitting working on my computer through the whole infusion listening to music and watching Fox News so the time was sailing right along. I barely even noticed when the infusion was over.. I just kept banging along on the computer. Before long, I notice that its after midnight but the steroids have me flying. I usually only get 6 hours sleep on a normal day so I wasn’t worried because I sure wasn’t going anywhere. About 130 I figured maybe I better start wrapping it up so I asked the nurse for an Ativan to take the edge off. I also noticed that the nasal thing hadn’t gone away and had, in fact, spread down into my gums and jaw. The one drug that you can’t be given through the whole transplant process is aspirin or Tylenol because of the infection masking qualities so a simple headache is not so simple. Let’s try some Benadryl.. that works sometimes. Sounded good .. helps let you go to sleep too.

I finally laid down and turned the lights off but the combo if the headache and the steroids had me wide awake with the lights off. I buzzed the nurse one more time and asked for a lunesta to knock me out. Cant do it… it’s after 3… unit rule…. I can give you Morphine for the headache.mmmmm. Seemed like a little bit of overkill but what the heck… I do OK on a few hours of sleep but my no sleep days are way behind me. He morphine worked… so ended day one.

 

 

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4 Responses to The Main Event – Day 1

  1. Carol Wolf

    I’m following this with great interest Ron. You have some challenging days ahead of you. Stay strong and focus on imagining a great outcome. 🙂

  2. Bob Bear

    I love the picture of you doing laps in the ward. Keep doing them as much as you can! It will keep you energetic.

  3. Jim G (the heart guy)

    Ron, if it helps, we can feel the pain all the way out here in your “fan land” of blog followers. Steroids, been there done that back with the heart transplant – some very productive days with those added waking hours of energy, but thankfully I didn’t have the chemo induced headaches. Sorry ’bout that!

    As Carol commented here, “stay strong and focus on imagining the great outcome.”

    By the way, what good books are you enjoying to help pass the time there. On the medical side I can recommend one I’m deep into (as I face some interesting cancer decisions myself right now): YOUR MEDICAL MIND: How to Decide What is Right for You by Groopman & Hartzband. On the more just for fun reading side, THE BEST OF ME (recently released and available for Kindle reading even if you do’t have a Kindle by downloading their app onto your laptop – seems perfect for someone holed up in a hospital like you are right now – check it out at http://www.amazon.com/s/ref=nb_sb_ss_c_2_10?url=search-alias%3Ddigital-text&field-keywords=best+of+me&sprefix=best+of+me) by my favorite author, Nicholas Sparks was one of those “can’t put down” reads that will be devoured in less than a day (if those treatments don’t get in the way).

    What kind of reading do you do and enjoy most, Ron?

    with supportive thoughts and words,
    – Jim (that heart guy in NJ)

  4. Melinda Robinson

    Whew! Reading about your claustaphobia, gave ME claustaphobia. Deep breaths here. I am a great believer in sending Light to people in need, and since it’s about the only productive thing I can do in your case, that’s what I’m going to do. Seeing your room as you described it, helps. I can visualize that, but while I’m visualizing, I’m going to see you moving to a new, and brighter location. Know that every day while you are in the hospital, I will take some time to imagine you being well, strong, relaxed, with a positive reaction to the drugs you are being given.

    Your blog is the beginning of a great book. Maybe that will be the positive that comes out of the negative in this journey.
    My best,
    Melinda Robinson

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