Taking Vienna: 2015

Monday, September 7, 2015

Doing The Moffitt Hokey-Pokey

“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

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.

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. 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!

Thursday, June 11, 2015

Remembering Normal

“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. I also highly recommend TJ & Jen Sharpe's blog, mainly about melanoma but useful for all cancer patients, Patient 1

June 11, 2015 Transplant Day +111

I've now finished my two days worth of +90 workups, spread over a couple of weeks. "Normally" (that will be today's theme) I would have been living over in Tampa until Day 90, and had all that work done before I came home. Just for those interested, in the two days I had psyc workup, CT scans, more blood work than usual, a pulmonary function test (checking out my lungs), another bone marrow biopsy, more lab work, two doctor visits, and was supposed to have an eye exam. That last one didn't happen, due to a major backup in the eye clinic. Otherwise, all results so far are A+++++, (still waiting for the biopsy results).

There's always a surprise in this business. Last week, the doc told me I wasn't getting enough sun! After living like a vampire, in total fear of the sun for months, only going out before 10 or after 4, and then with long sleeves, big hat, and whole body sunscreen even under the long clothing (denim leaks UV. Who knew?), he tells me the reason my Vitamin D is low, even with handfuls of supplements, is no sunlight. I now have an Rx for 15-20 minutes of sun a day. We're way beyond logic here, so we just roll with it. Nice to be able to go down to the mailbox without having to don The Full Armor Of Dracula!

The Good Doc Ayala keeps telling me how far ahead of the curve I am. While also reminding me anything can happen. Which continues the dichotomy that is cancer. (See Cancer Is A Binary Number). Almost every writer who gets cancer posts an article about the duality of life with cancer, living a normal existence while also in a parallel universe, life is a sort of slow motion train wreck, with each step taking weeks or months. Planning for tomorrow, while also planning for there not to be a tomorrow.

The other standard post all cancer victims/writers do is about "The New Normal." (Just today I saw this article). After taking Vienna the first time I lived for 5 years with a graph stuck to my bookcase at work, showing the relapse rates vs time, and marking off each year I stayed "above average." Agonizing over my retirement account, while staring into the possibility of a dramatically shortened life span. Celebrating each family milestone, weddings, graduations, vacations, by appreciating the fact that, without remission, I'd be missing them.

What I wasn't quite ready for were the feeling I'm having now. We're all used to the "big event" feeling. Months or years getting ready for a "life event" like a wedding, retirement, or major vacation culminate in a huge success, then it's "what's next?" After my first round with cancer, 17 months of treatment between 2005 and 2007, there was always the spectre of relapse in front of me. We hoarded vacation days against the need to bridge disability time; held off home improvements and vacations to build a cash reserve for expenses, and lived the dual life I mention above. Planning for a long life with a long retirement, while at the same time, planning for a relapse, another transplant, and the possibility of failure.

Well, now, I'm cured! Almost certainly. And the "almost" is close enough to "certainty" that we're able to focus only on one path forward, the good one. Which leaves me with a habit I have to break. 9 years of thinking two ways, with limited horizons and a negative pall on long term plans, is over. Yet, my daily drive to work takes me right by my local cancer center, so its a constant reminder of the lurking beast, always out there. That pesky "almost."

The doctor who first found my cancer, herself a lymphoma survivor, told me it was five years before a whole day went by when she didn't think about it at least once. I suspect I won't even make it that soon, but I've decided that's not necessarily a bad thing. Major events in our lives, good and bad, shape who we are and what we do. Cancer is a part of my life experience, and overall I'm a far better person for it. While I wouldn't wish it on my worst enemy, (which I actually don't have many of, at least from my side of things), the lessons I've learned have grown me in great and wonderful ways.

Thus, the theme of my missionary efforts. It's not just winning battles, it's how you fight the war. In a rapid change of metaphors, it really does matter how you play the game, win or lose. People have asked me how I stay so calm in adversarial work situations. Well, my perspective has changed. Little in my daily job is a life or death matter. Much of it doesn't affect the greater outcome, launching humans into space safely. Where it does matter, its about getting the right thing done, not winning over someone else. And mostly, in life, work, play, family, and community, it's about the people.

And that's what cancer has really taught me. It's about the people. Little else truly matters in the long run.

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.

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. 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.

Download the book here

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!

Saturday, April 25, 2015

Heading Home Only Gets You to Second Base

“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.

April 25, 2015 - Transplant Day +65

Today I'm at home for my third weekend in a row. These weekend passes are the best medicine ever. Barring any issues, when we go back Sunday it will be to finish the week at Hope Lodge, and then home for good! I meet with the doctor every Thursday afternoon, and last week he re-affirmed that next Thursday, April 30 should be my last day as a permanent resident of Moffitt. That's about 20 days ahead of schedule. He tells me I'm a boring patient. Nothing to do to me, nothing to say. I'm completely OK with that.

I've had a bit of a problem with minor skin rashes the last two weeks. After several calls to the clinic, and a couple of checkups, there is a split decision. The Fellow (M.D. in training for specialization as a bone marrow transplant doctor) thinks that even though it doesn't itch, and isn't red, it is caused by mild Graft vs Host disease. The main doctor, isn't really sure and isn't worried about it, as long as over the counter hydrocortisone fixes it.

This week one of the families sharing our Hope Lodge kitchen invited everyone for lasagna. Everyone kicked in a side dish, and we had quite a nice meal together. There are six tables in our dining area, and we all talk together whenever families are eating at the same time, but for this meal we shoved them all together. It made a huge difference in the social dynamic. As we sat there, chatting after a very good dinner, I was struck by how unbiased cancer is. We had people from Columbia, Nicaragua (of Indian heritage), a Jewish family from Miami with Eastern European heritage, and a couple of average Caucasian types like me. Some seemed fairly wealthy, some blue collar. Ages varied from 20 to 67, about half men and half women. Our donors are from Germany, Columbia, and India. Everyone in the room had a different type of cancer.

It turns out that no matter what racial and social divisions exist in our country, cancer just doesn't care. And in the waiting rooms, and out patient facilities, where there is lots of time to get to chat with other people, nothing matters except the cancer. Prejudice and bias are zero based by the deadly and disabling nature of the illness.

As Sandy and I enter our last week (fingers crossed) in Tampa, we're scrambling to finish up activities we'd planned, places to visit, restaurants to eat at. When we packed to come home this weekend, we filled the car with more than half the stuff we'd accumulated in our suite. It seemed like we did it all in one trip, moving from the hospital to Hope Lodge, but somehow between store trips, visits from the kids bringing over items I'd forgotten, and just growth of junk, we've got about three times a much to bring back as we took in. First world problem, moving our excess of material goods from one home to another!

The routine after I come home is a couple of weekly visits back to Moffitt. One of those trips I get evaluated to see if they will OK me to drive again. Then the third week of May a major day of CT scan, pulmonary function test, eye exam (another test of graft vs host disease), labs, immunizations, and a doctor visit. Two weeks later I'm back for another doctor visit and a bone marrow biopsy.

In theory, I'm supposed to be out of work for at least 90 days after the first 90 day period. In practice, it depends on a lot of things, like how well I'm doing. I'll have to be careful of infections for a long time, actually several years, so somehow the balance between caution and living a fairly normal life has to be struck.

We continue to be overwhelmed by the level of support we're receiving from family, friends, neighbors, and co-workers. I don't want to detail everything here, but know that we appreciate every communication, favor, and donation we've gotten.

In other news, based on visibility from my Cure blog, I got an assignment from them to do a fairly major article in an upcoming print issue. In the process I've gotten to know another patient whose approach to cancer is a lot like my own. T.J. Sharpe is fighting melanoma, and has an excellent blog (not just for melanoma patients) at Patient #1 which I highly recommend.

I am praying daily for members of my work team that have cancer, have spouses with cancer, or are in the hospital for other reasons. I can tell you from direct experience it matters.

Monday, April 13, 2015

Early Release?

“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

Monday, April 6, 2015

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.

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.

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

Wednesday, March 25, 2015

Two Weeks Down, Two Months To Go

“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.

March 25, 2015

Tomorrow will start my third week out of the hospital, five weeks since my transplant, and six since I left Titusville for Tampa. The difference in my health and lifestyle from my last post, a week ago, is remarkable. Meaning I'm going to remark on it. Literally. More than I just did.

A week ago, I was blessed to participate, via remote control, as my group of friends, co-workers and fellow runners/walkers did the KSC Runway 5K/2 Mile walk. They did it at KSC, I phoned it in from Moffitt. Last Thursday, my feet were still too puffy for shoes, so I did the hallways at Hope Lodge, 30 laps for two miles, in my slippers. I was also still tied to my IV pump, so I carried it in its fetching over the shoulder case. What a great boost it was for me to see pics of my team, many of whom were part of last year's run, together and remembering me.

The next morning, Friday, my feet were back to almost normal. I managed shoes, and did a short walk outside. Now, we walk every morning, and I'm up to 1.3 miles outside. The USF campus is "Florida hilly" meaning there are some noticeable slopes. I have to be careful pushing up those, but still get there. It's beautiful, with lots of trees and green spaces, ponds, fountains, ducks & geese, and lots of great landscaping. It helps me forget I'm in the middle of a major city.

Which, I realized last weekend, is one of my problems. Not only am I homesick for my family, house, town, friends, and job; I'm here in the middle of a major city. A short trip to the store, just down the street, involves a car trip with 8 lanes of traffic, 2-3 light changes per intersection, and tens of thousands of people. I'm pretty much a small town creature, living my whole life in suburbs of places like the far edge of Titusville. I get twitchy with all this humanity packed around me. So the walks around the quiet tree covered campus really help.

My eating is getting better all the time. I get a sudden urge for something and we go for it. Burrito from Taco Bell, a melted sandwich from Subway, and last night it was Pizza Hut. Sandy and I went to a matinee movie yesterday (Tuesday at 1:45, we were the only ones in the theater, which is part of my plan to keep away from germ laden crowds.) It was a rare day without a planned clinic visit so we took advantage of it. Popcorn was good, too. I still have to think through what I can, can't, and won't eat, but each day it's a little bit more, something a little bit different, and I'm working to increase my protein level every day. Remembering to drink enough is also a challenge.

My latest unplanned trip to the clinic, today, to investigate a minor side effect was probably caused by not getting enough to drink the last two days. So I'm back to forcing down water, Gatoraid, and other juices.

I've thoroughly enjoyed visits from my family over the last two weekends. Being isolated from them is one of the biggest things I struggle with. I really appreciate all the texts and Emails I get from all of you, and really light up when I get one.

The doctors say I am doing very well, completely on track. The next month is one of gaining stamina, regaining my appetite, and staying healthy. Then we start the countdown, in early May, to see if I escape Graft vs. Host disease, or if I don't, how serious it is. Until then it's drink, eat, sleep, walk, and try to get my mind back in the game. I find that my brain is keeping parallel with my body - slowly recovering my old energy, and adding a new task or "to do" item each day. I overload, mentally as well as physically, pretty easily so I'm trying to pace myself despite my eagerness to just have this all over with.

Again, thank you for the stunning support Sandy and I are getting from all of you.

Kevin

Tuesday, March 17, 2015

Same Game, Different Facility

“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

March 17, St. Patrick’s Day, 2015

Week One Out of the Hospital

On Thursday, March 12 I moved from Moffitt as an inpatient to Hope Lodge as an outpatient. It was a tough day, taking most of the afternoon to get released, then going to the Lodge, checking in, then we had to shop for groceries. Later that night, a home health nurse came in to get me set up on a portable IV pump, since I’m still on antibiotics to clear up an infection I got on March 5^th. By the time she left, and we cooked dinner, it was very late and I was very exhausted.

The next couple of days were great, in that there was no hospital routine, and I could manage my own schedule somewhat, especially at night. It was still very tough, and it took me a few days to figure out why. I expected, leaving the hospital, to suddenly feel better. Turns out, I felt just the same, but in a new place. No miracle cure from moving across the street.

We visit the outpatient clinic at Moffitt every day. Sometimes for labs, sometimes to see a P.A., sometimes just to flush my central line. We are able to take a little golf cart shuttle, which is convenient, but then are immersed in the same old clinic routine of sign in, wait, see someone, wait, etc.. It usually occupies half our day, either morning, midday, or afternoon.

Otherwise I’m sleeping 9-11 hours a night (up 5-10 times for bathroom); napping 2-3 times a day for an hour; and trying to eat. Getting food in my body is my #1 healing step right now, but it’s hard. I have no appetite and nothing tastes even vaguely appealing. So I sit there and shove food in, treating it like medicine, knowing I need to do it. Losing the joy of eating is one of cancer treatment’s biggest downers.

Other than some residual swelling in my feet and legs (still going everywhere in slippers), I’m doing OK overall. Managing fatigue, trying to eat, and getting some exercise are the big things right now.

I have started hall walking here at Hope Lodge, like I did at the hospital. 15 laps is a mile. Boring but necessary. In a short while I hope I’ll be able to do some outside while the weather is still nice. Today I’m remotely participating in the KSC Runway Walk/Run. I’m doing my 2 miles inside the hallways today, about 120NM west of Runway 33. I sure miss all the great gang of Space Coast runners I’ve come to know, and especially those in my group. We had such a great time last year.

I see my main transplant doctor on Thursday, and expect nothing but good news. That will be a week after getting out of the hospital, and a month after the transplant.

In the meantime, the support we're receiving from friends, family, co-workers, and strangers humbles and awes us. Thanks to you all.

Thursday, March 5, 2015

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

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.