The Long Long Waiting 

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

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

 

Download the book here

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.

WARNING WARNING WARNING - I'll keep this "PG" rated, medically speaking, but  I can't tell my story without some Pretty Graphic (thus the PG!) stuff.

Day +9, Saturday , February 21

My friends Kimberly Budnick and Rory Duncan came over to give the results of a surprise =fundraising luncheon held at the Kennedy Space Center. Over 137 pounds of taco meat makes a LOT of salads. Sandy and  are humbled that a small group, headed by Myrha Tubriday could put this  together and hundreds of people from around the Center took their own time to attend. Others kicked in gift cards as well.  Space Center people are the best, and this continues to prove it. One of the idiosyncrasies of the Be The Match Grant Program is that you can't even apply until you've had your transplant!


Another problem is the worst chemo brain I've ever had. I mistype the simplest words. It feels a lot like dyslexia, and isn't helped any by our smart phones auto-correcting. I found my iPHone 5 hiding under a pile of Depends yesterday, having  a heart to hear conversation with an Android in Swaili.

An even bigger problem is that in trying to correct my nausea, they gave me several  mind altering drugs, like Ativan, and several of the other more powerful ones. They were also treating my continuous diarrhea and rampant hemorrhoids with drugs that can alter the mind.

We finally went to oxycodone, since part of my eating problem was that my stomach hurt. Fortunately I have a hair trigger stomach for oxycodone, so that experiment ended quickly.

Then, I got an infection (possible) in one of my chest lines (Like Caleb) which means more antibiotics.

I tried to count the non-chemo drugs and ran out of focus around 30. Then because of not eating, I needed lot fluids and electrolytes. An then there was a possible sinus infection that turned out to be OK, but that took to "Field Trips" to CT rooms and some more extra meds to take.

The neupogen, which encourages white cells to grow, must be doing its work because I can barely move a shuffle a second. I also can't bend over too far.

I have had 4-5 platelet transplants and a whole blood transplant, to bridge until things start happening. Doc say my side effects are fair to normal, progress if good, and that two years spend getting ready are paying off every day.

I'm not kidding about how badly my typing had gotten. The draft of the previous seven paragraphs I saved before I crashed late this night had over 26 major spelling or word use errors.

Day +10 Sunday through +14 Thursday

Well it's been a rough week. By Sunday morning, I could barely breathe, move, or get out of bed. I was on continuous oxygen and my medical team turned from much more of a formality into a full court, multi arm diagnosis that took until Tuesday night. Pulmonary doctors were added too. They were concerned about my huge fluid retention, possible blood clots, some sort of medicine interactions, and my sudden lack of mobility. I went from walking 3-4 miles a day to one where I was transferred from gurney to gurney. I was also having severe hallucinations and other mental stability issues.

On Tuesday, when Sandy arrived to serve as my medical advocate, since I was no longer competent to make my own decisions, I spent every spare minute between appointments telling her everything I could about what I noticed, what Doctors said, nurses noticed, and things I thought they were missing. They settled on the fluid retention as the most likely cause, as results from more critical tests came back. They started a course of diuretics, as well as fluid limitations. By Wednesday morning thing were slowly returning to the right direction. I was able to be off oxygen when sitting, could walk with spotters and support, and was able to integrate two of the four worlds I'd been living in. Nurses noticed by Wednesday afternoon I wasn't answering questions out loud from people not in the room.

Today, Thursday, was even better. All major tests are negative, I've been off oxygen almost all day, and have re-integrated fully three of my four environments. I walked, with a walker, almost a mile in total. More diuretics tonight, more fluid limitations, and hopefully tomorrow will be better.

Things are still pretty rugged. Chemo patients will tell you that mucosa, the linings of the lips gums and tongue are savaged. "Cotton mouth" can be agony when your lips, teeth, tongue, and cheeks are glued together constantly. Usually patients use saline washes, ice chips, and things like club soda to lubricate constantly. Limiting that brings serious physical and mental stress. That's still a big problem for me.

My diarrhea and hemorrhoids have yet to be conquered after three weeks. I'm not expected to engraft for another week, which is when things really start to climb back up.

Still, when you've been to the bottom, halfway up starts to look pretty darned good.


Through Monday, Day +18

Things, overall, keep trending up. Had a wonderful weekend. Sandy was already here, and three of our kids were able to come for a visit. Being together as most of a family, even for a few hours, was so refreshing. Then on Sunday I had a visit from a nice young man who lives in the area, who I've known since he was three. Seeing all these "20's" adults, who have turned out so well, makes me feel a bit of gratification for the years of hard work we've invested. Later, most of the family went to the Orlando City Soccer Club opening game. Sandy and I were each at our respective "homes" and missed being able to go, but watching together on TV via texting was at least a nice substitute.

Medically, it's been a roller coaster. Friday, which was, according to my plan, supposed to be a "getting better" day instead brought a nosebleed, a very serious event when you have no clotting ability. Getting that under control was an all day activity best not described in public.

Then this morning, I came down with a urinary tract infection, an incredibly painful experience. We are in the early stages of getting a handle on this one. On my blog for CURE Magazine,these last few things inspired a pretty good post, which you might check out.

This is my 24th day in the hospital, and supposedly I am going to be released to outpatient at the end of the week. I am really getting cabin fever, and hopefully I'll breath fresh air pretty soon.