Taking Vienna

Thursday, November 17, 2016

New Challenges, New Acronyms

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

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

Acronym Two: IVIG

Overall, since the transplant (and relapse) my health has been very good. I work full time (plus some OT), exercise, and pretty much enjoy life. However, each time I’ve travelled, I’ve wound up with a nasty head cold, which initially responded to treatment but then bounced back, settling in my chest. This has happened WAY too many times. It takes weeks to get over the cold, and the cough lasts months. Enter another new procedure in our plans: Intravenous Immunoglobulin, or IVIG.

This has been around a long time, but is now used a lot more, including with transplant patients. Antibodies from thousands of blood donors are pooled together, then given to those of us with low immunity. According to both one of my PA’s and CNP’s, these treatments can have amazing results. I started these this week, and have one monthly for 6 months. It was pretty much 100% like my Rituxan treatments, same combo of stupid/groggy/hyped up premeds, and a 4 hour drip. Just the usual post-pre-med aftereffects, problems sleeping and getting back into normal rhythm, which I’ve done over 4 dozen times before.

While I really feel good, between the minor side effects of my treatments, and lingering long term colds, I don’t have that really peppy feeling I did before I relapsed. I’m hoping that getting my immunity back up to par will help me get back to that version of normal. I guess that’s Normal 3.0, not Normal 4.0, like my latest Cure column talks about. (Bragging, that one made it into a print edition!)

Anything Else?

Yes. But it’s a surprise. You’ll have to hang on until I get the next update done, to see what else I’ve been doing besides family, work, home, and cancer!

Friday, July 15, 2016

Campaign Three - Familiar Start, Unknown Future

“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

If you can meet with Triumph and Disaster

And treat those two impostors just the same;

Kipling, "If", Second Stanza, Second Verse

July 15, 2016 -My New Example Of Perseverance

I read a wide variety of books, seeking insights and wisdom as I move through life. One "trendy" book, at least back in the '90's, was The Book Of Five Rings by Miyamoto Musashi. Like a lot of these management fads, I only took one thing away from it, but what I took has fundamentally changed my approach to life. In my book, Rambling Along His Way, in the essay "Rhythms Of Life" (free download, shameless promotion for Rambling and More Rambling), I talk about how we live with many cycles within our existence. Some we are very aware of. Christmas comes once a year, we're never ready, and we complain that the stores convert their holiday sales areas too early. Monthly, we pay bills, and flip calendars. Weekly, we get paid and Fridays come around. Daily, we get up and do what needs to be done.

The epiphany for me was that we are living in a single cycle, also, called life. We're born, go through life events, and sooner or later, we move to the next life. Since our awareness is usually slower than the cycle, we don't always see this. Only by looking at others, particularly our parents and children, do we truly view the "seasons of life" that are mentioned in both the Book of Ecclesiastes and by The Byrds. I can see that, at the age of 58, with children grown and career concluding, that I'm in a different place than I was at 22 or 47.

I specifically use age 47 because that's the last age I was BC (before cancer). I fought that one, lived to 55, relapsed, fought that one, lived to 58, now here I am again. But, as I indicated in my last post, I'm getting better at doing the cancer thing. I know the ins and outs of treatments, side effects, and The Medical Machine. My family has quickly settled into Cancer Normal, doing what we do, physically and procedurally.

What's changed is that Taking Vienna the third time is different than taking it the second time, which was different than the first. Emotionally, we're in a different place, both based on our current life season,, and progression through the treatment path. Mainly though, I'd say it's the hope cycle we're really dealing with here. How many times, we ask, must we go through this? Are we ready to give up on a cure, and get our heads to a place where this is a chronic, life long disease?

Up until now, my cancer example was a local lady named Betty. She was well known around our community, due to her incredibly gracious manner, her quiet spiritual leadership, and the example she set in how to live in the world while not buying into current mores. To me, though, Betty is the lady I shared the chemo room with, who was on her sixth cancer battle. At #3, with a decade of fighting under my belt, I'm one of the old hands at this among the local oncology crowd. I'm still only half way to Betty's mark. So I've held that as a "desperation goal," that I can equal that mark, six full rounds.

Well, in the situation I'm in, with two failed transplants behind me, I've added another inspiration, a nameless man I've never met. He's 52 now, relapsed about 5 times, and has received NINE of the DLI treatments I am headed for. His story, in extreme medical geek talk, is in this 2013 journal article. As of then, he'd lived a decade past his failed transplant, through 9 further mini transplants, and I see no reason why I can't do the same thing. Sure, looking ahead to multiple relapses and more cycles of infusions and possible Graft vs. Host episodes, is rather daunting. But, as the whole theme of this post suggests, quoting my 2 year old grandson, "I've got this." I know how to live with cancer. I can balance work, family life, and treatments. I can do the Moffitt Hokey Pokey for as long as I need to. And if I'm sitting here at age 68, writing Taking Vienna Campaign Six, well, I can live with that.

News You Can Use

After that philosophy blast, it's time for some nuggets of actual information for my huge and greatly appreciated support group. You've been asking, "what's the plan?" Well here they are:

Plan A: Restart ibrutinib daily - began June 22. Monthly Rituxan infusions - began July 6. Repeat bone marrow biopsy and scans every 2 months, until disease is back under control (not actually remission, but under control with the glorious status of NED (no evidence of disease) or progress stops (about 6-8 months max)

Plan A.1: Given the ibrutinib/Rituxan combo works as well as it did in 2014, start Donor Lymphocyte Infusions. Here's a quick, lay article explaining DLIs. These might be called (not by a doctor, but close enough for us lay folk) "mini transfusions." My original donor, who I thank God for every day, would have to go through the donation routine again. Assuming he agrees, they pull stem cells and freeze them. I get little doses, without any further chemo prep. The hope is to generate just enough Graft vs Host to kill off the cancer and maintain me cancer free without further treatments. The doses escalate until I reach the right level of GvH vs side effects, so I can live a normal life without any more treatments.

Plan B: If the ibrutinib/Rituxan doesn't beat back the cancer. We move to more aggressive treatments, anything from immunomodifiers like Bendamustine (my 2012 regime) or even back to traditional chemo drugs. Alternatively, there are some new drugs in the pipeline, similar to ibrutinib, that show possible good outcomes.

So, pathfinding again. I'm out there on the frontiers of treating Mantle Cell Lymphoma. I occasionally run into folks, on line, that have more years than I do, giving me hope that we can do this a long long time.

Saturday, June 25, 2016

Vienna Beckons Again

“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. 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.

June 22, 2016 - Another Day That Will Live In Infamy

I've been reading a lot of Kipling lately. I never served in the military, and I've never been in combat, but like many people I fight my own individual battles in my personal war with cancer, and like the theme of this blog shows, I take much wisdom from the horrors of humankind's wars. A quote I'm taking quite a bit of inspiration from:

"If you can force your heart and nerve and sinew to serve your turn long after they are gone, and so hold on when there is nothing in you except the will which says to them: 'Hold on!'" (From the poem "If", Kipling, 1910. I recommend you read it, the first stanza is famous, but the meat is in the later portions).

I've spent this week in communication with my family and many of my friends, but frankly, am overwhelmed with the task. I am truly blessed with a circle of hundreds of people whom I care about, who care about me, and have supported me throughout my long and often frustrating tenure as a cancer patient.

I've decided it's time to go public with my latest news. Last year's transplant, which hundreds of you followed here and also on my Cure blog, failed to provide a durable response. Meaning the lymphoma is back. It gives me great pain, in fact, emotional agony, at the way this will affect you all. All cancer patients will tell you that the worst part of cancer, including the whole sucky treatment and life threatening aspects, is the huge and dreadful impact on our loved ones.

I've written about this before, talking about the different rhythms in life. I'm learning about the rhythms of cancer. The first Diagnosis Day was horrible. The shock and whirlwind of activity lasted for weeks. I fought it for 17 months, then had a great 5 years in remission. The second D Day took less time to move into the next mental phase, and I knew the ropes of getting back into treatment. After 3 years in that battle, I had a fantastic year of health and hope. This time, within a few hours, I had myself into "angry and aggressive fighting mode" in about 3 hours. I still am subject to random waves of outspoken cursing, and one minute long pity parties, but mostly it's back to business.

Details of my treatments and progress will be posted another day. This is enough news for one day.

My dear cancer family and supporters: know this. I will conduct this third campaign with the same enthusiasm, vigor, joy, and spirit as I have the last two times. And by now, we know, gentle readers, you're there if we need you, and be assured we'll ask for help when necessary.

If you can force your heart and nerve and sinew to serve your turn long after they are gone, and so hold on when there is nothing in you except the will which says to them: 'Hold on!'
Read more at: http://www.brainyquote.com/quotes/quotes/r/rudyardkip101657.html

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