Day +144: Not a Bed of Roses

This post was supposgrizzlyed to be a week 1 at home summary. Then it became a week 2 summary. It is now a week 6 summary. Have you wondered what happened to me? Well, here’s the story.

I drove home from Houston on Friday, October 24th and felt just fine. Our grandson, Colton, came to unload the car for us. He is a great blessing, especially on that day. The next day was dedicated to unpacking the many boxes we brought back from Houston. Sunday found us in church as usual. Melanie went early to visit with friends. I arrived late and sat in the balcony with the technical crew thus avoiding most curious friends who wanted to hug me and shake my hand.

So far, everything is A-OK.

It wasn’t until Monday that things took a downturn. We met our new oncologist, Dr. Cleveland, for the first time. She is very nice, though much younger than Dr. Kota, my previous provider who has since temporarily retired. After reading the results of my blood work and comparing these to the past records from MD Anderson, she announced that I would need IVIG treatments to invigorate my falling immune system. I was scheduled to receive four treatments, three at the clinic and the fourth at CHI St. Vincent Hot Springs, our local hospital.

All went well until the visit at the hospital. I did a very graceful (in my opinion) face plant in the grassy knoll in the parking lot of the hospital. I really don’t know what happened. One minute I was standing, the next I was falling and hit mostly face first. It did a great job of messing up my handsome face and nose! I proceeded to the admissions office wondering why people were looking at me as though I was a strange beast. It wasn’t until later when I looked in a mirror that I knew why. Not a pretty sight. I completed the final IVIG treatment and went home. I did not go to church that Sunday.

IVIG treatments, especially that many in a row, leave me feeling rather weak.

My next visit with Dr. Cleveland was uneventful. It was the Friday visit that changed everything. “How would you like to spend a couple days in the hospital with me?” she asked. I found myself direct admitted to a room on the fourth floor at the end of a long corridor, rather isolated from all the other patients in the cancer wing. It seems I had some kind of infection, though no one at that time knew what it was.

Let me set the record straight. MD Anderson has two floors set aside for nothing but leukemia patients, one of them with pods specially designed and equipped for stem cell transplant patients. I was encouraged to walk the halls, gloved and masked of course. St. Vincent Hot Springs has no such floor or pod. I was a prisoner in this small room. It was too dangerous to leave it and roam the halls. I had no way to exercise and I had once again lost my appetite. I lost more weight. I lost more strength. I stayed a full week before I was finally diagnosed with a fungal infection , received treatment, and was released.

That puts us into week three. I came home weak and frustrated at the setback. Sometime around the middle of week four, my appetite returned. I began to regain my balance. I could walk without fear of falling (which I never did after the face plant).  All this time, I wanted to write to you all, but didn’t have enough strength or motivation.

Recovery has been slow. My strength is slowly returning. My balance has mostly returned. I am under self-quarantine since the flu shot this year is mostly ineffective against the most virulent form of the disease. I suppose you could say I have become a grizzly bear and am in hibernation.

I guess this is the life of a stem cell transplant patient with a very young immune system. We have our ups and our downs. We conquer one mountain and move on to the next because we are survivors. We will overcome all obstacles as we carefully tread our way to the ultimate goal: a cancer free life.

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One Response to Day +144: Not a Bed of Roses

  1. Patty VanAllan says:

    From your friendly MDA volunteer: I am sorry for your setbacks, but glad that things are slowly improving and you are getting good care at home. Best wishes to you and your lovely wife.

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