Midpoint - Halfway Home 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

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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.



April 6, 2015  Day +45

Halfway through! Given everything continues to go well, and I don't contract a serious case of Graft vs. Host disease, I am able to go home on Day +90. Last week, the doctor hinted that my progress is such that he might consider releasing me a bit early, subject to the caveat above (no GvH). He also is going to let me come home weekends starting the upcoming one!

He actually said we could have gone Easter weekend, but we just couldn't sort out the logistics that quickly. Which turns out to be a good thing. (See my Cure post: Well That Wasnt the Way This Day Was Planned).  I woke up Saturday morning with a swollen lump on my neck, right where the central line used to go into a vein on my neck. We spent a long day in the clinic, including a 4 hour wait for a call in ultrasound tech, to make sure it wasn't a clot. Which it wasn't. The best guess (2 PA's, 2 answers) was either phlebitis or a small piece of the catheter sleeving left behind. Neither one a problem as long as the swelling goes down (it mostly has) and it doesn't reoccur. Of course, it's weird this popped up 8 days after line removal, but pretty much half the stuff I go in there with is a head scratcher, so why not?

Medically, they say I'm doing very very well. I feel good, down to one nap per day, but still sleeping 12 hours and I'm toast after about 7pm. My legs have been very sore for over a week. At first we thought it was just because of walking, normal exercise soreness, but it reminds me of a time back in 2010 or so when I had a similar problem. Any time I sit or lie down for more than a little while, standing up involves stiffness, pain, and doing a Frankenstein's Monster walk until I loosen up. Doesn't interfere with walking once it's sorted out. I skipped a few days of dedicated outside walking (clinic schedule, unplanned day in clinic, Easter Sunday) but was back out this morning, did just a mile to give myself a slow re-start.

We had lots of company Saturday and Sunday, two other families plus much of our own, so the weekend (starting late Saturday afternoon) passed quickly and happily.

I've not talked a lot about my relationship with God throughout this whole ordeal, at least not lately. Easter weekend helped me realize that. Rest assured, I've gotten closer, not farther away. I find myself praying more, not less, than I used to. Not just for me, but for my family, the people around me, and mostly for my caregiver, partner, and love of my life, my wife. She is bearing an incredible burden and doing it so impressively I have to think she's being Divinely supported. I give thanks every day for her, my family, friends, and the hundreds of you who are supporting me in this rather interesting adventure.

This place, Moffitt Cancer Center, is one of the single most depressing places you can imagine. Floors and floors full of rooms and rooms full of rows and rows of sick, beat up looking people. Usually, it's easy to spot the patient. Lack of hair, wristbands, and gauze patches on chests are pretty obvious. Sometimes, though, there's no visible marks. I've gotten pretty good at looking at people's eyes and reading them. There's two looks that are sometimes subtle, but one is always there. One is a faint desperation, a sort of confused hopelessness. A lot of new patients have that, and also many who have come far down the road. Others, though, maybe most of the time, there's a defiance. A sort of "you can't beat me down" optimism shining out. We live now on a floor full of bone marrow transplant patients, and share a common kitchen and dining room. I can say that almost all the people we talk to have that positive, "we're going to beat this thing" attitude, which is tough when you're so sick, immune suppressed, ridden with side effects, exhausted, and looking at a 90 day sentence. Please read my post,The Morning Face of Courage for more on this subject.

The days and weeks click by, with a sort of slow, steady rhythm. As I feel better every week, and I don't get GvH, I'm hoping time will speed up a bit. Going home for the weekend will surely help that.

Thanks to all of you,

Kevin