Breakout – Dec 23 2011 – Merry Christmas

Thursday night was probably the longest night I spent at the hospital. I had been cleared for discharge on Friday by the “A Team”, earlier that day but a lot could happen between now and then. I took care of what was within my control. As much as I wasn’t into walking “Laps”, I knew I’d be asked if I had so…. out and about… chit chatting with anyone I passed along the way. I met a really nice lady and her husband out by the lounge. Her transplant day was the next day. As we got talking, I found that she had had a half dozen different unrelated surguries in the past, so it wasn’t hard to be very upbeat and assure her that if anyone was ready for what lay ahead, she was. I put in 2-3 laps, until my leg didn’t want to walk anymore and headed back into my room.

 

I ordered breakfast, lunch and dinner on Thursday.,, Even went back to the crab cakes for a second or third time. I drank about 6 pitchers of water along with various beverages that came with the meals. I know I’d be quizzed on the eating and drinking and didn’t want there to be any doubt in anyone’s mind that all those systems were working. It’s not too hard to imagine where all that liquid ends up so there was a lot of up/down/back and forth during the day. Throw a shower into the mix and my check list was complete. Everything that was within my control, was taken care of.

 

It was now down to the things that were out of my control, mainly any sort of fever or crazy move in my blood counts. It seems like the “Vitals” lady came in a dozen time that day. Each time she stuck a thermometer in my mouth I counted the seconds to the triple beep….OK? Yep.. great…

 

I got to bed early on Thursday night. I had a few movies left that I hadn’t seen yet so I set the laptop up as my mini-movie theater as I had done in the past. In the past the movies had put me to sleep but not tonight. I took an Ativan at 11PM, my regular time, which usually took the edge off if the movie didn’t but…. not tonight. I just laid there in the bed with my eyes wide open. The last thing I wanted was to be half asleep when the “A Team” came in Friday morning so after about 8 seconds addition thought I pushed the call light and when right to the Lunesta…. lights out. The next thing I remember was the vitals and jump on the scale lady coming in the room at 6AM.. Whew… I felt great… and rested. The thermometer want in, and I counted the seconds until the faint. Beep,,, beep,,, beep. Very calmly I asked… How we doin?… Great…. Bingo. I jumped out of bed and onto the scale for one last weigh in and laid back down feeling pretty good. I didn’t go back to sleep because I knew the nurse was going to be in momentarily to draw blood, one more time. I was almost there….

 

The NP came in early and we discussed discharge as well as letting me know that they would probably give me a bonus bag of platelets to “top me off” prior to uninstalling the catheter. What time do you think I’ll be out of here? Awww….. mid afternoon or so. Not bad, sounded reasonable enough. Shortly after that the NP came back with the rest of the “A Team”. Discharge was confirmed for later that day… the only part of that conversation I remember… I was almost there.

 

My wife and son showed up around 10. It didn’t take long to pack what I had. Meanwhile the bag of platelets had finished and I was ready for the catheter to come out. Having had the benefit of that other catheter coming out by mistake on transplant day, I knew it wasn’t going to be a big deal. Three breaths and on the third, keep exhaling until I say to stop, the NP explained. No problem…. Within seconds it was all out of my chest and the NP was applying pressure (I guess she didn’t want me to spring a leak). Before I knew it, she put a bandage where the catheter used to be…. whoopie… let’s get out of here.

 

The next part was on last truly amazing moment. Anyone who has ever been to the hospital before, knows that when its time to move anywhere in the hospital, it usually involves calling “Transport” and someone show up to push you to wherever you happen to be going… OR, Radiology, Front door. It took me all of about 3 minutes to get ready to go after the catheter had been taken out. Within abut 3 ½ minutes, my RN was standing there with a wheelchair. Come on Mr P… let’s go. My son ran ahead to bring the car around to the front door. I got in the wheelchair and was ready to be dropped at the unit door to wait for someone from transport. Next thing I know, another RN shows up and the two say let’s go and proceeded to push me into the elevator and off to the 1st floor. Wow….. Is there any wonder why I love nurses. Next thing I see my son pulling up to the front door and the nurses push me out to the car and help me up and into the front seat…Goodbye Mr P… What a great way to end my hospital stay. Before I knew it we were headed up 1st Ave headed home. It was only 1PM. It was so nice to be in my own care with my wife and son. I didn’t care if it took 2 hours to get home from there. Within a short period of time I was in my own bed… boy did it feel good.

 

Our Christmas Eve and Christmas Day was pretty low key but it was still the best Christmas I can ever remember. Thank you all so much for your thoughts and prayers. God Bless Everyone.

Merry Christmas

 

 

 

 

 

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Down the Rabbit Hole – Post Transplant Day – to Day 11

Once the excitement of my new birthday had passed and everyone had returned to whatever it is that they were doing I was left with plenty of time to think about what had just happened and what was going to happen in the future. I understood the “theory”. For all practicable purposes the good doctors and nurses had completely destroyed my existing immune system. I was officially the “boy in the bubble” although I am not sure that even his counts were as low as mine. All I had to do was wait for those freshly planted stem cells to grow and I would be as good as new….. better then new. Have they actually done this before to other people? Did it really work? It all sounded simple enough in theory but now it was no longer theory… it was my body that was being used for this little science experiment. I used to be pretty good growing tomatoes… I guess it was the same idea.. without the dirt.

The more I got thinking about those tomatoes the more my mind wandered.. I had always grown tomatoes from small plants… never from seeds. I had planted radishes from seeds before. They seemed to always grow OK… they grew pretty quickly too. So maybe these new cells inside me where going to grow like radishes… but then I got thinking…how about if they were like carrots. I NEVER had any luck growing carrots…mmmm. One by one I want through my entire horticultural lifetime experience… vegetable by vegetable… The conclusion of that mental exercise was to hope that these people were better at growing cells then I was at growing vegetables.. oh well.. what’s the worst that can happen?

A quick thought though shift got me onto that subject….what is the worst that can happen and how would I adjust..after all I had managed to adjust to everything else that life had sent my way…mmmm.. what if those cells didn’t grow? Maybe I could live in a little room at Sloan Kettering. I was starting to get used to it… I had a room with a bit of a view…. Spring was only 3 months away… I had Internet access… I worked for an Internet based company. Sure… I could do that.. no big deal…. The insurance company probably wouldn’t even notice. Whew..enough of that. Another one of life’s problems solved. Back to the TV.. I had just worked pretty hard but it was worth it… I could sleep well knowing thievery would be OK.

The next few days were pretty uneventful.. the whole “growing” thing wasn’t supposed to happen until 10 days after transplant. The nurses came and went. The A Team came in once a day to check up on me. I spent most of my day on the computer.. emailing back and forth. Visitors came and went. It was very nice having visitors but I was quite conscious of their time and the fact that my idea of a good time… at the moment… was quite different then their idea. I was somewhat conscious of the world beyond my door.. I tried to not think about it much because that door was a long time from being able to open for me.

I handled the time issue a little like I did out in the real world. I’m not sure if I’ve mentioned it before but the absolute worst day of the year for me is the day we switch from Daylight Savings time to regular time..OMG I can’t tell you how much I hate that day… over the years I have managed to play little mind games with myself to get from that day… through the shortest day of the year December 21st… and back to Daylight Savings and the longer days.

I am involved in an annual Christmas Tree sale at my church which absorbs a lot of time… right through the shortest day of the year. Then there are the holidays…After that football (real and fantasy) intensifies all the way until sometime in early February. On February 12th..the sun actually rises as my morning train pulls out of the station (655AM) and sets as my evening train leaves the station (527PM)… From that day on the days get noticeably longer until the TV guy tell you its time to turn your clocks back again… a sign that you made it through another winter.

I had made up my mind that I would handle this voluntary incarceration the same way. This time period even coincided with that period above (minus the fact that I wasn’t going to sell many Christmas trees from the 10th floor on York Avenue.

I came to the conclusion early on that the best way to pass time was to stay busy. I had my office set up in the room. The closer I could keep to standard work activities the better Id be and the faster the time would pass.

This worked…. for a while. Each day the A Team came in and each day I smiled and kept up my Mr Happy approach. As each day went by the A Team seemed a little more confused/concerned… “Are you sure you feel OK?” “How are you eating?”. I remember the one day confessing that I wasn’t able to eat a full dinner but was able to eat a bowl of soup and 3 Ice Creams…. From their reaction I guessed that maybe I was supposed to be telling them that I was unable to keep food down… mmmm..

Everyone was worried about mouth sores. I had heard that they could be pretty bad I wasn’t exactly sure why until one of the nurses told me a fairly disgusting (gross) story… I forget exactly what day it was but within this 0 count period. She said “The reason you are so susceptible to sores is at some point the outside layer of your entire digestive system from your mouth to … the other end sloughs off and is discharged. Holy Sh T!!!! NOW THAT WAS AN IMAGE. It was an image that was real hard to shake. I had burned the top of my mouth before on hot pizza or pot pie…. I certainly knew how that felt.. and that was with all the blood counts in the world.. running free in my home town….

By Day 7 I had fought reality about as long as I was going to. I had developed some sores and had some drug pump hooked up. I never did quite figure out how to work it. I was going through the motions of working but (Hindsight wise) I guess I was pretty messed up. Below is an email that I know took me over an hour to compose. I remember looking over it many times to make sure it was correct. Once it was correct I hit the sand button and then closed up shop for the day.

Last email Dec 14th

I guess you don’t know until you try. Yesterday and today… I showed how I functioned at zeros across the board.I am having a HARD

TIME WITH SIMPLE TYPING… WEIRD

hOP QLL IW GOING OK

sEE YOU TOMORROW

Hugs
Ron

The next morning I got a call with a WTF? I guess it was time to take a few days off.

Luckily I was ready for that too. I was a product of the 60’s and 70’s and although I wasn’t really a druggy (too expensive…. I was a beer drinker instead) I really liked the drug music of the time. My buddies from the train had swiped me a poster from the train for a Jimi Hendrix concert and had hung it on my wall in the hospital. Before entering the hospital I had bought an Ipad and download a ton of music from that era including Hendrix The Doors Janis Joplin etc etc.

Well… on Day 8 I dimmed the lights closed the curtains put in my earbuds cranked up the music and enjoyed the high…… Purple Haze…. Nice. The Ateam actually looked happy to see me there for a day in a stupor. The nurses still came in and did what nurses do. The aids still came in and went through the motions of doing what they were supposed to be doing before they got back to the home shopping network in the lounge outside the room… I managed to eat an ice cream or two… I slept a lot and listened to a lot of music….Time… at that point.. had no meaning.. For exercise.. I got up and sat in my chair and stared out the window at the lights on the 59th Street bridge…. I remember thinking…. WOW… As high as I was I still managed to think about where I was and what was going to happen next…. hopefully. I was completely at peace with myself bring in God’s hands. What was going to happen was going to happen…. and for a reason. The one thing that I didn’t want to be sitting in a chair staring at lights and high for any extended period of time… Then came Day 10

Day 10 was the day that had been bantered around for months as the day that the stem cell “Garden” should start to grow. As a C minus chemistry student I was thinking 10 but knew I wasn’t going to worry until 11-12 or even 13. The A Team came in as usual. I had the Hendrix music off by then and actually felt pretty good. I’m not sure if the “feeling good” was real or if it was because I had told myself I’d be feeling good by day 10. After a little small talk the nurse (or doctor) said…”Your count is point 5… like one half of one. Well…… I can’t tell you how good that felt. Damn!!! I thought…. this stuff is actually working. Don’t get me wrong… in the real world… a point 5 is one foot in the grave (maybe both) but in transplant land….. it was the beginning of life not the end.

When the A Team left… I opened the curtains as wide as they would go. Tore the aide away from the Home Shopping Network and told her I needed her to play lifeguard as I went in and got a shower.. took a great shower…. skipped shaving because my platelets were still way down and I wasn’t going anywhere but inside my room. I came out and set my computer back up called my wife and my business partner……. JACK WAS BACK.. so to speak… Whew…. never any doubt…mmmmmmm

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Day Double Zero – Transplant Day

 

 

 Happy Birthday Ron…. December 7th, 2011

 Day Double Zero – Transplant Day… 2nd Try

HAPPY BIRTHDAY!!!! The whole staff cheered as the last of my stem cells were reintroduced into my body. Very, cool, I thought. It made sense. The old Ron was being rebooted and the new Ron lay ahead. Even cooler then that was the actual date, Dec 7, 2011.. the 70th anniversary of the attack on Pearl Harbor….70 years ago, this attack not only rebooted the US Navy but the entire country as well. Years ago, my son’s politically correct 1st grade teacher sent an assignment home for the kids to pick their “Favorite December Holiday” and make something and bring to class to be part of a display. I showed the December calendar to my son and asked him to pick a holiday. As luck would have it, he picked December 7th. You can imagine the looks on peoples faces as the rest of the class came in with Christmas Trees and Dradels and my son comes in with a homemade model of the USS Arizona. Funny how things work out sometimes..

 

Well the transplant day started off much like the day before. A nice shower, followed by a good dose of medication. The atmosphere was slightly more stressful then the day before. We had enough fun on Day 0… didn’t need a repeat on Day Double 0. My nurse for the day was Erica. She had never actually been my nurse but I knew her from the chemo part of the process where you needed 2 nurses to confirm that the correct chemo was being hung. Erica was great. Her job that morning was to be the official lemon holder. Im not exactly she what the deal was with the lemons but the preservative used with the stem cells has a bit of an odor and the lemon helped offset the smell. Im not sure about the smell part but it was nice having her there. In addition to her, all the member of the A Team(my nickname) were there as well as my wife and friend..

 

Just as I was just about at my emotional wits end, the Stem Cells arrived. Drum roll……. as serious as the moment might have been, I couldn’t help but break out laughing. A very serious looking nurse/NP/Doctor shows up with what looks like a Dim Sum cart. On one side was something that looked like a fondue dish with a thermometer and the other side… a $5 Igloo Cooler. All this technology came down to something I could have bought in a 7/11 on my way to the hospital.

 

Well… the process from there was as easy as they said it would be. I had 2 bags of cells, frozen in the Igloo. One at a time, the bags were \brought over to the warmer and thawed. The thawed cells were injected though one of the new tubes, installed the previous day. It was all over in no time. The moment the last of the cells were injected, the room cheered Happy Birthday… Wow

 

I don’t remember much more of the day. My wife told me I zonked out and looked like I was going to sleep for a month. I didn’t sleep a month but did wake up later in the afternoon.. me and my new cells. I guess I was still pretty zonked because I didn’t even realize that my wife had left for the day, and had not just gone to the store.

 

I didn’t sleep much but that didn’t matter. I was sort of getting used to it. I was looking forward to the next day. The was supposed to clear sun was supposed to be shining through my new new window.

Happy Birthday, I thought to myself… it felt pretty good

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Day 7 – Transplant day…. almost

This sure doesn’t look like a stem cell transplant

To me this was day 7. To the hospital transplant team it was Day Zero, Transplant Day. This day had been pre-billed as pretty “anti-climatic”.  My day started with the regular Nurse Practitioner checking in, the nurses aid, taking vital signs and a new nurse team.  Transplant was scheduled for 1030AM so there was time to grab a shower and relax a bit before the big event.

After the shower it was decided to start the pre-transplant medications and change the dressing on my catheter. The drug part went fine.  They mellowed me right out. The dressing changing seemed like it was going to be pretty routine.  There was a lot of tube flushing and other nurselkke procedures and th bandage was reapplied. One small problem…. when they tried to flush the new line, I start feeling liquid. MMmmmm this doesn’t seem right. I raised my voice a few times until I had everyone’s attention. The next thing is a Doctor type appears in the room with a little bit of a puzzled look on her face. “This line isn’t connected to anything, as she pulls the whole tube out and has it dangling in her hand.

Mmmmmmmmmm again…. good thing I was on medication because this wasn’t good.  All I could think of was my cells being thawed out and no way to get them into me. The NP flew out of the room and called off that part before it happened… whew. Meanwhile I have a room full of people trying to act normal. Well that part worked… My son tells me that I looked more pissed than nervous. (Not a good poker face, I guess).  The decision was made pretty quickly to postpone the Day zero transplant, sent me down to IR to get a new catheter and do it all over on the next day…. Day Double Zero.

I will write about this more when I’m feeling a little better but I hadn’t want to keep you in suspense any longer.

Tomorrow….. Day Double Zero….

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Day 6 – The Submarine Surfaces

Day 6 – Escape from the Conning Tower

Day 6 in transplant talk is “Rest Day”.. the day prior to having my stem cells put back into my body. To me, this day meant one more day to get out of the submarine conning tower and into a room with a view.  By 630PM, a half hour before the aides shift change, I was told that Room 812 was available and had a bright cityscape view. BINGO. Within minutes I had everything in my room packed and ready to go.  After a minor scuffle with the aid, my stuff was moved and I am now looking out the window watching the traffic below and the lights ahead.  It’s GREAT. I said my Novena to St Ann, early. Had a quick bite to eat and getting ready for Monday Night Football in a few minutes.

Tomorrow is the big day…. 11AM is the plan. By noon I should have 5million new stem cells swimming around my system looking for a place to grow.

Talk to you soon

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Main Event – Day 2-5

MSKCC 835 Prepares to Dive

Main Event – Days 2-5

As you might have guesses, Day 2 started back in Day 1 with a 6AM wake up call for vital signs and to hop on the scale followed by a visit by nurse practitioner and the physician team. I knew from firsts light that it was going to be a long day but there wasn’t much I could do about it other than suck it up and get through the day. I wasn’t driving and heavy equipment and my bed was never far away so how hard could it be.

 

A quick glance out the window at the wall, helped me focus on my personal mission of the day… getting my room moved. Everyone who entered the room got my sales pitch. The “team” pointed out that my blood pressure was still elevated. Of course it’s elevated, I’m sitting in a submarine waiting for the hatch to close. I guess that idea fell more into “alternative medicine” because while everyone smiled…. a change in my blood pressure medicine trumped my natural solution. It wouldn’t be the last time something like this would happen so I had a choice… drive myself nuts or make it a game. I opted for the game option. I reset my goal for the room change for the weeks I was growing cells, not the one where I was killing them. I’ll keep you posted on that one

 

The first week is a lot about routine and numbers.. Nothing goes unchecked, and double checked. I remember getting a C in Chemistry, and that was only because the teacher liked me, because an experimental error of about 20% was just fine with me. Guys like me didn’t end up in Med School. I am really starting to appreciate those kids who hit the 99.9’s and were upset they didn’t hit 100. These are the types of people on the team taking care of me… and I’m quite thankful for that.

 

Everything that goes into you is measured…. as well as everything that goes out… everything. If there is anything out of balance, it gets analyzed, and treated. Its like I’m a giant chemistry experiment, which of course, I am.

 

Everyone on the unit has more or less the same goal…. getting home in better shape then they were before the transplant, but but there is no one-size-fits-all magic formula to get there. The course I am on is day one was one dose of chemo, days 2-5 is 2 different chemos twice a day, a 4th chem on the 6th day… a day of rest followed by the stem cells. I hear that the actual stem cell part is fairly anti-climatic but I’ll let you know soon enough..

 

All (Normal) days start the same way…

  1. 6am Vital Signs and weigh-in
  2. 8AM Visit by the Nurse Practitioner.- The NP asks some general questions, listens to lungs and heart and gives you a good hint of anything unusual and a possible course of action.
  3. 8ish – RN who is in charge for the shift comes in and does another exam, checks lines, dressings and answers any questions. While everyone is important, the RN is your main contact. and caregiver. I love nurses… been married to one for 25 years. I’ll do a whole chapter on them later on.
  4. 830 ish – The medical “Team” , consisting of a Doctor, a Resident and the Nurse Practitioner. Your lungs and heart get listened to again and any medical issues of the day are discussed. As long as everything is OK, you don’t see this group again until the next day
  5. Housekeeping comes in right around this time and cleans the floors, bathroom and empties the trash.
  6. 9Am – First bag of chemo is hung. There are always 2 nurses at the beginning of this part. The one spells out the patients name, from the patients armband as well as the patient ID. As long as the 2 match, the bag is hung. The rate of drip is entered by one and confirmed by the other and you’re “Off to the races”. Once bag one is complete, the same procedure is repeated with the 2nd chemo. I’m looking at the clock this moment and its a little after 1. This same procedure is repeated 12 hours later so my day ends around 1AM.

 

There is no set schedule for the rest of the time. Meds all seem to come in a bag and are easily administered. Some of the drugs are to help manage the side effects of the Chemo. Some are ordered by the “Team” and others are to manage the side effects of the side effects. It’s pretty much a numbers game and all part of that chemistry project… me.

 

My white count was 1.5 this morning. The mission is to get it to 0 before the Transplant on Tuesday. That’s the medical part. On the psychological end, then the count gets to 1, you are not allowed out of your room until it gets back up on the other end of the process. I am told that day will be tomorrow. The hatches close and submarine will officially dive under the waves.

 

Up Periscope!

 

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The Main Event – Day 1

 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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The Stem Cell Collection

Collecting 5 Million Stems Cells… the Old Fashioned Way

 

Road to a Stem Cell Transplant – The Stem Cell Collection

Sorry for getting sidetracked from the story but I had to get to the stem cell collection part of the story while it was still really fresh in my mind. If you remember back in Part 2, the “plan” was to drive the lymphoma into remission and then knock it out for good with a stem cell transplant. After 6 rounds of chemo and against pretty high odds, I produced a negative Pet Scan. I barely had time for a victory lap before it was time to get back to business… the bonus round.. the stem cell transplant.

Back in June, the whole harvesting part of the stem cells was presented as “sort of like giving blood”… No big deal. Now that we have 5 million stem cells in a bag with my name on it, I can tell you that the only thing stem cell collection had in common with giving blood is that both donors go to the same place to give.

There are basically 2 different types of stem cell transplants used in the treatment of liquid tumors like lymphoma. One way is to use the patients cells and the other is to use donor cells. In my case I am able to use my cells. Apparently stem cells hide out in the bone marrow. Stem cells are cells that have not yet turned into white cells, red cells or platelets, The trick is to get the cells to leave the marrow and go into the blood stream so they can be harvested something like platelets. The donor goes into the blood center, gets a couple IVs inserted and the blood is taken out of the body, stem cells removed, and the blood returned to the body. The whole process takes a few hours…..MMmmmmm,, sort of.

The trick, of course, is getting the cells out of the marrow, in enough numbers, to be able to be harvested… Intellectually, I assumed there was a little more that ringing a bell or something to get them to leave but…. Here’s the deal.

Friday I started the process in the OR having a Hickman Catheter inserted into my jugular vein (sub-clavian, actually). The procedure was simple enough,as long as I didn’t think about it too much. The drugs were great. The surgeon was playing some great old rock and roll while I was nodding out and before I knew it, I had this “Matrix” looking thing with 2 leads, hanging out of my shoulder. It didn’t take long before I realized I had taken my last great shower until Christmas, because the world ends if you get this contraption wet. The good news was that from now until the end of the process, I would not need anymore IV’s. I was running on “straight pipes”. To get anythng in or out of my blood system you needed to merely “hook up” and give or take.

The “increasing the number of stem cells” part, I mentioned above was not drinking a few extra glasses of orange juice or taking a pill. This was accomplished by not 1, not 2 but 3 injections each day until enough cells were collected. And the moving of these cells was not done by beating a drum but by a bonus injection in the evening. By Tuesday morning, when I showed up at the blood center, I had 12 injections of drug A and one injection of drug B.

The donation part was pretty much, as advertised, with one small detail missing. The nurse told me that the doctor ordered 5 million stem cells (per kilo body weight). She then said that most people netted about a million the first day. WTF….. Not me, nurse, I’m going to be one and done. “Nope”, replied the nurse… “nobody does it in one day”. Another WTF….(Non-verbalized, of course). The doctor in charge of the blood unit came in for a visit and she repeated the same line but added… less than 10% get away the first day. Bingo…. now we’re talking… my kind of odds.

Three hours later I was being unhooked from the machine and a smallish bag of stem cells were shown to me, with my name on it, before it was whisked away by messenger to be counted by the cell counter. The nurse said she would call around 330p with the number and that she would see me the next day. After popping into the office for a few hours, I was on the train home when the call came in… Hello… long pause… “How many do you think we collected” asked the nurse. Normally I would have been into a little chit chat but opted for the direct response, “Don’t know.. How many”. We got 4,969,000… pause… we round that up to 5 million…. Good luck with your transplant. Whew!! The rest of the ride home was nice. I went to bed early to watch a movie and didn’t quite get past the opening credits before I fell asleep… one step closer to the man event.

PS: A funny side note. When the nurse first hooked me up to the machine, she was explaining something about if you have a reaction to X, we do Y. Part of this “reaction” included tingling in the hands and feet. I have MS and tingle all the time so I didn’t give it a whole lot of extra thought. I was focused on 3 hours… and not coming back. About 2 hours into the process my body started to vibrate like a tuning fork. This happened a lot with the MS so I didn’t say anything other then confirm I had 50 more minutes to go. The more time that passed by the more my body vibrated to the point my wife noticed an expression change and asked me what was going on. Of course, my answer was “Nothing”. The vibration continued to get worse to the point that I called the nurse to ask how much more time I had….. Three minutes, plus 10 minutes to get the blood that was left in the machine back in your body… Why. With three minutes to go I figured I might as well confess… Ohhhh said the nurse, who turned around and grabbed something from another table…. “Here, take 3 of these”. She had a large bottle of Tums in her hand. Huh? “Oh yes”, she said, “That vibrating is the sign that you need some calcium…take 3 tums and you’ll feel fine”. She was right. I could have felt fine an hour earlier. The hard headed German thing that gets me through most days, sort of got in my way that day. Maybe I’ll rethink keeping symptoms a secret next time.

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Road to a Stem Cell Transplant – Part 3

 

The Waiting Room at the Infusion Center

Road to a Stem Cell Transplant – Pt 3

Tuesday came about soon enough. For the first time in the process, I was a little apprehensive. After check-in I took a seat in the huge waiting room. The first step was to get blood drawn followed up by a visit to the Hematologist, followed by Chemo infusion. The clinic had a huge waiting room which was surrounded by exam rooms, administrative section and a blood collection center. Unlike the first visit, which I thought would be my last, I carefully scanned the entire clinic… the rooms… the patients, the nurses and the administrative personnel. One by one someone would be called and would go where instructed. When they were done, they came back to the bullpen to wait for the next call.

My first call was from the blood room. I followed the tech back into a smallish room where I was weighed and my temperature and blood pressure were taken and my blood was drawn. As is my nature, I chatted with the tech as well as well as any others within earshot. Everyone was laughing by the time they were done with me and wished me luck as I returned to the bullpen to continue assessing the people and physical facility.

Within a short period of time I heard my name called again, this time from the exam room side of the clinic. “It’s Showtime”, I remember thinking as I got up from the chair and headed into the doctor’s office. A nice, Resident came in to do the initial exam. I’m not sure I remembered a word she said that day. My mind was more focused on the Doctor and the infusions that were to follow. It wasn’t long before the doctor entered the room.

After a few words of wisdom from the doctor, I started my part of the conversation with, “Doc, I know that you are more than capable of killing me and that the doctor in the small hospital is capable of saving me but I chose you because I wanted to stack the deck in my favor as much as possible. I will do everything I am asked to do as a patient and I only ask that you and your staff do everything that they are supposed to do…. and we’ll let the chips fall where they may”. There wasn’t much of a rebuttal to that… only a confirmation that everyone was on the same page.

The first part of “being on the same page” concerned my MS. “As much as I want to be cured of this lymphoma, I don’t want to be cured but riding around in a wheelchair pissing myself”, I explained. One of the main chemo drugs has a side effect of Peripheral Neuropathy or “Numbness”. My hand, feet and right leg were already numb from the MS. Not numb, numb but feeling like they always have gloves on. My leg is somewhat numb all the time but gets worse, the more I walk. My day is normally pretty well planned so I never walk more than a few blocks to get anywhere. (Yes, hiking the Appalachian Trail is off my bucket list)

Doc put together a chemo mix that didn’t include that particular drug but warned…”we are already going off the protocol and you haven’t even started”. I know Doc.. Thanks.. but I have faith in you.. that is why you’re my doctor. He added a little history on T Cell Lymphoma which was nice. “We are a little behind the curve because we treated T Cell like B Cell for years and couldn’t figure out why the T’s didn’t do as well” he explained. “We’re catching up quickly now that we are treating it differently” That was an interesting tidbit of info. One of the best Cancer Centers in the country, admitting that they had been treating the disease I had, incorrectly for years. That actually made me fell pretty good.

He then added that “You know you’ll be taking a few days of Chemo orally after your infusion today”.. Mmmmm Ok. “Don’t worry, my nurse will tell you all about it. On the way back to the bullpen, I met his nurse who told me that they will deliver everything to the infusion room and that I can figure it out… it’s easy. From there is was back to the waiting room. The next time my name would be called it would be for the main event… the tension builds. Mr………… The show was about to begin.

End Part 3

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Road to a Stem Cell Transplant – Part 2


Another Commute on the MNR527

 

 

Road to a Stem Cell Transplant – Part 2

My trip to the city each day is usually an interesting event. There are about 10 of us who ride the same train together, talking mainly sports, the stock market or politics. While there are ten regulars there are a group of others who ride with the group less frequently. This particular morning, a nurse from a major cancer center happened to be in our group. I had never talked to her at any length in the past but grabbed the seat next to her this particular morning.

By the time we arrived at the city, we had exchanged email addresses and phone numbers. She asked me to email her the basic details, as we discussed. By that evening I received one of the most eloquently worded letters I had ever read, from this same nurse. Without saying anything really bad about the hospital I had just exited, she more then convinced me that I needed to switch hospitals. That T_Cell Lymphoma was very rare and nothing to play around with. She had already got me hooked up with the top doc, if I wanted to come in, for at least a 2nd opinion.

The following day was my followup with the local hematologist oncologist. It couldn’t have been orchestrated any better to convince me that my nurse friend was correct. First off, the doctor was over an hour late. The physical layout of the operation was depressing, at best. You could see to the back that there was one infusion room that looked more like a ward with the patients cancers running the whole gamut, not just lymphoma. I mentioned earlier that Non-Hodgkin T-Cell was rare but its even a bit rarer then rare… only 6000 cases per year. Spread that number among all the 3500 hematologists in the country, and… you get the point.

When I finally got in to see the doctor, she was very matter of fact…. treatment starts tomorrow… chop chop.. let’s go. She actually got pissed when I said I wanted to get a 2nd opinion. She said, “I already got a second opinion and he agrees with me”. Wow… get me the …. out of here. No, I think I’d like to get my own 2nd opinion… no offense… Please send the slides and charts to……….. I told her I’d get back to her but I think it was pretty clear in her mind that I wasn’t coming back…. unless I got a job with UPS and was delivering packages.

I showed up at the cancer center on a Tuesday afternoon. My doctor was the head of the whole lymphoma department. There was a whole building dedicated to lymphoma treatment. The waiting room reminded me of a cross between Yankee Stadium and the Port Authority bus terminal. It was actually somewhat comforting that everywhere you looked were people associated with lymphoma or other liquid tumors. Of course I was hoping that when they reread the biopsy slides I was going to be told I had an exotic infection of some sort and would be referred to an infectious disease doctor and everything would be cleared up with a few more rounds of antibiotics.

That thought lasted about 8 seconds, in between the new doctor saying “Hello, my name is” and “You have Non-Hodgkin s T_Cell Lymphoma. It’s very rare, very aggressive but not completely untreatable. Mmmmmm… ok. So… what’s the plan, doc? Well, we use high doses of chemo and if your body can take it… and it works… then you get a stem cell transplant. Wow… is that all? Oh… and as a bonus, I’ll knock that MS out too if we get that far? I read that same article, I replied trying to have my cockiness offset the doctor’s cowboy like presentation. After short pause, I said… “When do we get started?” Next Tuesday at 230….

End Part 2

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