Friday, March 25, 2016

Flexibility Required

It's been a while since I updated folks on how I am doing. In short...the same. I've done 17 cycles of maintenance and all my numbers look the same. Stable is good. But when we zoom in, the stability is not without bumps. As I write this I am wrapping up a week at home. I was sick with a bad cold a few weeks back. Nothing horrible, although I did miss a couple of days of work. But then this past weekend I developed a small cough. The cough actually started on Saturday after spending the day riding bikes at a Long Beach event. I'm sure the adult beverages and not having enough water didn't help.

By Sunday it was a more painful cough. Monday I went to work and the cough was worse. I also felt a temperature coming on. Checked it and it was 100.5. Went home and it was a bit higher. We made a quick visit to Dr Phan who prescribed an antibiotic and a chest x-ray.  Pneumonia and infections are two big things we myeloma patients want to avoid. About 5 PM Monday, I had the worst chills and shakes that I've had since I was diagnosed. That night around midnight my fever spiked to 104. Emergency room or not. That was the question. We decided to stay at home, take some tylenol, cold shower and try to get my body temperature down. Dr Phan always said that if my temp hits 101.5 or higher, that I should be in the hospital, But I opted for staying home. A little risky I suppose.

By Tuesday morning, my temperature was almost normal and the cough was much better. we had a visit with the pulmonologist that afternoon. He said my chest x-rays looked clear, but he did prescribe a more powerful antibiotic and inhaler. He also said to stay home for the rest of the week to ensure my body and immune system had recovered. Phan and I agreed to put off chemo for a week..again to give my immune system a chance to rebound. Now it's Friday and I've almost completed the week at home. Feeling way better. I was able to get some work done while at home. And I watched one of my favorite movies, Life or Something Like That for about the tenth time,

Meanwhile towards the end of April, I am having repeat surgery on my booty. When I had this surgery two years ago it was the most painful thing I'd experienced. Nothing even comes close. This time shouldn't be nearly as bad, So they say.

Meanwhile, training and fund raising for Kilimanjaro has started. This is scary on its own. Not a day goes by that I don't think about not doing it. But it's important to stick with it. We actually have a team hike coming up in July. A little early in the training for me, but it's aimed as a weekend of team building. Yikes, I'm not a big team person, but I'm gonna make it work. This climb has already tested many of my insecurities and fears. And I suppose that's point of it.

I've been fortunate that I'm doing as well as I am. I recognize the seriousness of my myeloma. But I think I have also built a bit of denial into my brain. I say I've accepted the myeloma. But when that fever hits and I get the chills, I definitely get a little scared. These were my symptoms right before I was diagnosed. Leslie talked to Berenson. We're running my myeloma labs. Berenson said a check for me is how my creatinine looks. Well, as of today it is 3.44. For me that is great. Myeloma is in check. I'll get the remaining results next week.

For now, I stay calm, get well and remain flexible. My routine is going to be interrupted. As always Leslie did an amazing job of taking care of me. She dealt with me being sick the week after her dad was in emergency. He's home and fine. I need to stay healthy so Leslie can focus on her health.

I'm just 6 weeks away from my 5th anniversary of being diagnosed. Whoot whoot. I'm going to be in the 50% survival rate beyond 5 years.  And that's my update. No change overall, but the devil is in the details.

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.