Friday, July 31, 2015

Oh, Those Pesky Restrictions
“If you start to take Vienna – take Vienna!!”
Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.
 

Please check out my formal journal at CURE Magazine, a world wide publication found in every oncologist's office. They have asked me to share my transplant experience. I also encourage you to read this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back. I also highly recommend TJ & Jen Sharpe's blog, mainly about melanoma but useful for all cancer patients, Patient 1

July 31, 2015 Transplant Day +161

First, the status, then the complaining, then the uplifting part.

I'm going to Moffitt monthly, and seeing my local oncologist once a month also, so every two weeks for blood work, prodding, and comments like "now, why are we even seeing you?" after a long series of "no" answers to a battery of questions, that used to be at least 25% "yes" responses. Next month, August 26, I do my 180 day battery of tests. Same as 90 day workup: Bone marrow biopsy, CT scan, Pulmonary Function test, lots of blood work, vaccines, doctor exam, and this time an added test, a Dexa scan for bone density. A typical, full day of being hungry, thirsty, poked (IV), unconscious, groggy, starving, stuffed, scanned, winded, poked (arterially), poked (veinously), poked (subcutaneously), scanned again, and finally poked (externally) along with some random thumping. Just another day of being cured!
 
 I feel great, walking (start/stop/backwards/run, repeat) a mile with Sandy and Casey "Lizard Hunter" Berry. For the record, it's the Mighty Hunter that keeps us from going a steady pace. Sandy and I, by ourselves, can easily do 3 miles in 50 minutes or so. Lately, though, after the mile stroll, I've been swimming laps, doing the 100 meters that our local YMCA mini-triathlon mandates.

After my last transplant, three of us survivors teamed up to do it. I took the swim. A year later, I did the whole thing myself. That's 100 meter swim, 4 mile bike, 2 mile run. (Taking The Big Ride)         They've changed the format a bit, but I'm working myself up to the idea of trying to do it in October. We'll see.

Working 30 hours a week now, which is pretty hard. When I was doing 20 hours a week, I knew I couldn't do it all. 6 hours a day, I'm near enough to a full day to feel like I should be doing it all, but I'm always behind. My short term disability runs out August 20, and I'm planning on going full time then. At the end of the 6ish hour day, I need a quick nap, then I'm good until bedtime. Everyone is very understanding in the office, and I get all the support I need, so it's going well.

On to the complaining. I'm totally over this whole "you're still recuperating" schtick. I'm ready to get back to normal. Real normal. Not some phony, wimpy, half baked "new" normal. (The New Normal) Instead, I've still got a bunch of restrictions. I'm doing a series over on my Cure blog about surviving in a world that's pretty much trying to kill me, more than it usually does. (Living A Clean Life In A Dirty World). The things that keep me from getting really sick, or worse, have morphed from being up front in my thinking to just an irritation I have trouble, sometimes, taking seriously. Which isn't good. But the fact I am sitting here griping about not being able to use a public ketchup pump means I'm not lying in a hospital somewhere, which seems like a fair trade when I'm not being grumpy.

I've written before about what an incredible family the Kennedy Space Center bunch are. We've been through so much together, professionally and personally, over so many decades, that when adversity strikes, everyone rallies around. The benefit luncheon they held for me in February, consuming 137 pounds of taco meat, provided a hugely important way for us to bridge between getting a paycheck and when disability kicked in.

Last week, my wonderful company, ERC, sponsored the second registration drive for Be The Match,
the bank that obtained my donated stem cells. In two hours, an incredible 31 people signed up, and donations of $1300 were raised! Here's a writeup and pic about that. Bone Marrow Drive.

The next two days, some folks sold ice cream sundaes to raise money for a breast cancer fund. The first day, they raised nearly $500. People at KSC just flat care. And give. For a place to spend your career, that's a pretty sweet deal.

I guess that's it until next month, when I can report on how holey I am!










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