08/09/2022
Transplant
Most of you know I went to Stanford Hospital for a bone marrow transplant. I knew it was going to be an extremely rough treatment and it did not disappoint.
For five days prior I received injections that increased my white blood cell count and my stem cell count. On the fifth day which turned in to a ten hour day it began with a double headed port called a Hickman catheter was put in my chest. The man performing the procedure came in and was immediately apparent this guy was a zen master His whole being radiated calm. He instructed me in what we were about to do inserting the new port, taking out the old and guiding a tube from that port under my skin over my collar bone and ending near my heart. He gave me the happy medicine. During the procedure I’m awake, aware but hell I just don’t care. Facing opposite of where Zen master was tugging and pushing one of the nurses aides and I had a lively discussion on film and my experience in the film business It concluded with him saying that was one of the more enjoyable sessions he’s had and thanking me. Heck I thanked him for helping occupy the time. on to multiple blood draws, chest X-rays, more infections etc. The next begins with a 4.5 hour process called apherisis. I’m hooked to a machine that is pumping my blood to a miniature cyclotron which separates the parts of my blood in to its separate components, keeps the white blood cells and stem cells then pumps the rest back to me.
My nurse would look over at my collection and called another nurse over to look as well. She looked quite pleased I asked what was up she replied that evidenced by the color of the collection it was one of the better draws she had seen. Understand that the collection process can take up to four days and if failing to get enough a patient would need a donor, a much more involved process with a higher failure rate I was grateful I completed the draw in one day with four times the amount I would need. I told the nurses I was their new prize milk cow
Somehow some bacteria just to add drama, why not, got into my collection but it was treated and didn’t cause me any harm. Just a moment to worry if I let it, but bearing with my philosophy of why worry if it I can’t affect the outcome I let it go.
Next stop, chemotherapy. We returned to the hospital a week later to begin phase II
Due to the massive doses of each chemical they put in, they deliver them separately vs. typically in a mix or cocktail and the process of putting it in your body is called an infusion Sounds lovely doesn’t it? Cocktails, infusions, yep. Hors D’oeuvres not so much. The first was over four hours The next day - day off. Day 3, 6 hours, day 4 rest day, day 5 with the final chemical 4 hours - this is the one that causes hair to fall out, day 6 rest, day 7 stem cells are put back in my body.
Now we wait for the cells to engraft back to my bones. The first few days were relatively symptom free. Stomach issues, wicked bad head ache. If that was it so what? My white blood cell count plummeted, it was headed to zero. Every vaccine I ever had has stripped from my body. I no longer had immunity to anything. If anti-vaxers want a purge, here’s your answer
A fever developed, it would spike to 102+ over and over and over again. Hot, freezing normal. No Tylenol as that would perhaps mask a bigger issue. The headaches were of the full cranial kind, the pain relief of choice there, Oxycotin. Which doesn’t work well for me and
I really don’t care for it It felt odd asking for Tylenol and getting Oxy.
I was told that the human body carries around three pounds of bacteria at all times. Good gut bacteria, skin bacteria etc. our immune system keeps it in check. Without an immune system the bacteria went ballistic in my GI tract. C difficile set in. So here if your sensitive read over. The first sign this was not a holiday was the nausea. With chemotherapy anti-nausea drugs are given and I’m not prone to it so I never felt nausea. Not this time. Dry heaves so fierce I felt that some stomach muscles surely were tearing. It left them sore to touch for weeks
The diarrhea started, every two hours or so. I was diagnosed with a bacterial infection in my GI.That meant no Imodium. I had to bear it out because the bacteria releases a toxin which could affect other body organs if detained in my body
The next seven days were sheer agony. The commode was place a foot from my bed, it wasn’t close enough. The intervals grew closer together now an hour apart. The slightest twitch in my system launched me in the direction of the commode Literally i was vaulting out of bed but of course I’m tied to an IV tether Clearing the little plastic tube from snags. Precious seconds wasted.. Still, often I didn’t fully make it. Ten pair of PJs in one night
Perhaps one saving grace was I was barely eating Between the chemo and the radiation I had no ability to taste.Everything tasted like metal coated paper. Now the intervals were coming between 40 and 20 minutes, for days. I can handle most anything but this had me pleading for mercy. Mercy didn’t come. I was getting dosed with very high levels of antibiotics but it took a week to get relief, finally sweet, sweet Imodium.
The days and nights are a blur I’m in a solo room everything is guarded from me getting and giving an infection. There’s a 4 foot tall HEPA filter churning continuously the door to the room is always closed, no outside air.
At this point I can only do which keeps me afloat , I laugh. I searched for comedy on the internet, binge watched 1883 (excellent) and listened to an excellent audio book recommended by my oldest dearest friends, Mark, The Magic Stings Of Freddy Presto. The iPad is one fantastic device. Distraction is key, do not dwell on what you cannot affect. Affect your condition in a positive way.
There is humor in everything, even the absurdity of it all
I am only eating to fill the hole, enough to stop the hunger pang no more. I may only eat two jellos in a day even though this hospital food was superior to most.
Surprisingly I wake up around day 8 feeling good. My white blood cell count has jumped up, other blood levels too. My stem cells have migrated to my bones and engraftment has occurred. It’s all up from here
The process has left me incredibly weak. Right now it’s difficult to walk 200 yards. This was bizarre. Those of you who know me know I’m a big strong guy. This made me so weak my legs wobbled. I lost over 12 pounds of muscle I could see it every where.
It didn’t help that all my hair is gone, I mean practically all, I still have my eyebrows and a bit on legs. There is a strange man looking back at the mirror.
I got released from the hospital 2 days earlier that expected as my body rebounds and my white blood cells kick it up. I’m grateful that the engraftment took so well.
All the pain, It’s all temporary. Every day I heal more and gather my strength. It’s time now to begin again. I have had at least four major setbacks on my path of keeping my body in the best shape possible. Losing my eye, the first cancer that caused me to have a hip replacement and a revision on that same hip 2 years later, and this one. It doesn’t matter that I must climb that sand dune again, I will and stand on top arms raised once again.
I have learned much on these journeys and to that end I’m going to give back. I have learned calm in the midst of the hurricane, to be rational, steady, peaceful and keep my spirits high. I have learned how to gather my strength and marshal that to heal. I have learned to have deeper interpersonal relationships, concentrate on what matters and communicate the best way I can
I have more friends than I know tell me I need to be a Life Coach. Having been coached by one of the original Life coaches, Laura Whitworth way back before starting my recruiting business in the early 90’s I have a deep understanding of how to best help.
I also have the experience of a two time cancer survivor, loss of an eye and a finger and how to be the best you can be during your most trying times
If you know of anyone who might benefit from this contact me through private message or email and would be happy to have an initial conversation to see if we might be a fit