Tuesday, May 19, 2015

Crossing 90
“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

May 19, 2015 Transplant Day +88

Things continue to roll along. Tomorrow we head back to Moffitt for my weekly visit, but this time I get the first half of what is normally a two day onsite workup. I go for the second half on June 4. Usually these two days of tests are the "graduation exercise" for people before they are released to go home at Day 90. Since I'm already home, they divided it up so we don't have to stay in a hotel two or three nights. Tomorrow its CT scans, pulmonary function tests, and major blood work. June 4 its eye exam, bone marrow biopsy, and more lab work.

Day 90 is the milestone that means the chances of acute Graft vs Host disease are very very low. At the 6 month mark, we start watching for signs of chronic GvH, but until then it's mostly about avoiding infections. Which is hard work, and keeps me busy with dozens of hand washings a day, and not doing a lot of things I didn't realize I'd miss, like yard work.

The big news from last week's visit is that I was cleared to drive. My reaction times, which I've always considered pretty slow (thus my last place finish for years in the Playground Draft) were actually darned good, averaging around 0.5 to 0.7 seconds against a 1 second requirement, based on a video game that makes Pong look sophisticated. Blood work continues to be really good, with white count somewhat depressed (Doc says it's the anti rejection drug). He also stopped one drug that manages side effects, and tomorrow I will go off the anti rejection drug, which is a little scary.

I've been doing a small amount of work from home throughout this adventure, mainly keeping email under control and staying near the loop for some major things going on. Next week, Tuesday, I am cleared to go back to the office for a few hours a day, which will be a huge step. Getting to see all my friends at the Center, and starting to participate in person, will really be a boost to my recovery.

I did have an interesting occurrence this week, darned near unique. I had a blog post rejected by my new editor at Cure, who felt I was straying off the message they hired me for. Early in my writing career, I collected rejection "letters" (an obsolete form of communication involving paper and a lot of waiting), eventually amassing a file drawer full before I pitched them out to make space for some other junk. Since 1993, though, I've only had two pieces bounced, so I guess out of several hundred published articles, columns and blog posts that's not too bad. What was the offending document, you ask? (KB pantomimes waiting, hand cupped to ear). It was an updated version of the post, How My Cancer Might Save Your Life, that I advertise in the banner to each post here. Upon reflection, I see that it really didn't fit the intent of my agreement with the magazine, so I'm over it. Really. But I will ask, have you read and considered what I say in that most heartfelt essay? I wrote it sitting at the bedside of my daughter in the summer of 2013 while she recovered from an automobile accident, and I can't begin to express how deep my feelings are about you, my friends and readers, changing your lives for the better.

The best part of this enforced time away from my friends, neighbors and co-workers is the way all of you made extra efforts to stay in touch. Visits, cards, emails, texts, FB messages, FB posts, comments on blogs, and phone calls all really helped me feel your caring. I appreciate each and every communication, and thank you for them.









Saturday, May 9, 2015

Cruising Through A Busy Time
“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 Jen Sharpe's post on her husband, T.J.'s blog, Melanoma Is A Thief.    

May 9, 2015 Transplant Day +78

We've been back in Titusville for a week now, and are having one of the busiest weeks we've had in a long time. Trip to Tampa Thursday for weekly checkups, all is great and going very well. Friday, our daughter Morgan graduated from UCF, Summa Cum Laude. All four of our offspring (I struggle with calling them "children") have or are doing extremely well in college. Our lifelong emphasis on the value of education seems to be paying off big time. Listening to the four of them sitting around talking about a wide range of topics, I'm impressed by the breadth and depth of education they've gotten.




 Jordan and Kevin came down Thursday night, and stayed until this morning. This afternoon, Sandy and Morgan follow them to Thomasville, since Kevin is being dedicated at church tomorrow on Mother's day. Also we were blessed that Sandy's sister Martha and nephew Harrison were in town for an athletic competition, so were able to go to Morgan's graduation dinner with us. I had to miss the actual graduation, too many people for my immune system, but the meal with a big bunch of family was wonderful.

Spending time with Jordan and Kevin was wonderful. I was allowed to hold him, since he hasn't been sick or vaccinated for a few weeks. He's such a sweet and funny and bright and beautiful and .... sorry. Not only is all that true, objectively, but I find also myself a bit biased. It gets away from me sometimes. But just assume I threw the thesaurus at that sentence, and kept going for about three pages.




Medical Stuff

My counts are pretty good. My white count, a rough indicator of my immunity, was hovering around 5, which is low normal, and better than it had been since my first transplant. Lately it's crept down into the 2.5 range, which the doc says is very probably a function of the anti-rejection drug and the antibiotic. He is pretty sure that when I get off them my counts will pop back up. I stop the Sirolimus (anti-rejection) at Day 90, along with another drug that protects me against the drug that protects me against rejection. Its a complicated thing, this transplant deal. Soon after, maybe around day 110, he'll stop the antibiotics and antivirals, after a detailed blood test that shows my specific immunity levels. Our weekly visits have become a series of questions answered by "no" and a smiling contest. No dry eyes, no nausea, no pain, no mouth sores, no trouble sleeping, no no no no no. Nothing for a doctor to do but admire his handiwork.

The skin rashes continue, but are very minor and manageable. My fatigue level is quite low, I skip naps many days now, and am on a pretty solid 11pm to 9 am sleep schedule. My appetite is pretty much back to normal, with almost all foods tasting good to me (if they tasted good to me before!)

Next week I visit with the psychologist to be cleared to be able to drive again. That will be a huge help to the family, who've been stuck driving me around for 2 months. For me, it will be another step of freedom. I've been cleared to return to work in the office at KSC beginning May 26, part time. Then after 4-6 weeks, full time.

I still have to follow stringent hygiene protocols, both with food and my surroundings. Those will go on for quite a while. I'm sun sensitive, haven't started my baby immunizations yet, and am still quite restricted on eating food we didn't prepare ourselves. All that, is nothing compared with the feeling that, after almost a decade, I'M CURED!