Wednesday, October 5, 2016

Vikings 4-0

The great news is the Vikings are 4-0 and sources tell me they are looking like super bowl contenders. They are the Vikings so anything can happen. But so far the season is fantastic. Their defense is huge. I got scared the other day, thinking what if they did make the super bowl and I was off in Africa. Kilimanjaro and the super bowl are both in February. But I checked schedules and I'm good. No overlap. Perhaps I am jinxing things by getting so fired up. But eff that, I'm fired up and nothing can change it.

On the myeloma front, it's interesting times. The good news is that my time at work is winding down. Of course, work doesn't know about this and won't know about it, unless they read this blog, which I seriously doubt. A broad window for retiring is between now and April 2017. More specifically I am aiming for putting in a retirement notice when I get back from Kilimanjaro. This makes me happy. My contingency plan is that I might decide to retire any day, depending on how I feel.

Lately I've felt like crap and I've mentally checked out of work. Everything I do is aimed at wrapping things up and being able to hand them over. But it's all seeming meaningless right about now. And I'm running on fumes, so the energy for 40 hour weeks is slowly dissipating.

The myeloma? Well my kidneys, which are the primary measure of how I'm doing, are doing fantastic. They're better than they've been since I was diagnosed.  Other numbers like light chains and protein in my urine are inching up. I think if it were up to Dr Phan, we'd switch up my chemo regimen. Berenson isn't ready to make the shift. The goal/mission is to get every last benefit out of my maintenance protocol. Things aren't changing rapidly enough to warrant change.

But I'm tired. My weekly Procrit shots aren't really doing a good job of getting my blood counts up. So I'm running on 2/3 normal blood counts.  Everything aches. Phan is running various tests to see what's up. Berenson says arthritis. Phan says neuropathy. Both don't think it's bone damage caused by the myeloma. My feeling it is both arthritis and neuropathy. Some test results have come in and I'm definitely showing significant inflammation. Tomorrow is a skeletal survey, basically full body x rays, and this ought to enlighten us a bit more.

I'm coming up with my own plan of attack, because history shows the doctors will be vague about what I can do about this.  So I need to lighten up, the plan is to drop 15 pounds. This ought to relieve stress on the joints. I'm also reducing my carb and sugars intake. Both are inflammatory foods. I need to eat a non-inflammatory diet. And I need to keep exercising to keep the bones and muscles strong.

I've been on cruise control for a couple of years. Now, at 5 years and 5 months it seems that either the myeloma is changing or the non stop chemo is taking it's toll on me. We'll know what is what over the next couple of weeks.

I'm sure I've said this before; I've accepted my ultimate fate with this here myeloma. An advocate passed away this week from pneumonia. She was doing great a month ago. It's sad news. And that's the mystery of myeloma, you just never know when your immune system will quit and some virus or infection brings you down.  I'm not ready to go But I do have an exit strategy in mind. I'm not ready to execute it. But absolutely this is a large reason why I am excited to stop working. I need to get on with living and enjoying life. A desk does not fit into this goal.

Also, I hesitated to write this post. I know it worries some folks, particularly family members.  But remember, I partly view this blog as an avenue to share my experience with other patients and as a way for me to vent. Writing can be cathartic. So it might seem harsh and scary, but it's all ok. I'm still captaining this ship.

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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.