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.

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

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 13, 2015  Day +53

 This will be just a quick update, since a lot of my news is on today's Cure post, Riding the Emotional Roller Coaster.

I'm feeling great. Less fatigue every day, some days I skip the nap. Appetite is great, I'm eating everything except vegetables, which are my next challenge. Since the Easter Saturday incident with the site of my former central line, I've only had to call the clinic once, for a minor skin rash that everyone is sure isn't GvH related. But we watch it closely, none the less.

I'm down to labs and doctor visit once a week, on Thursday afternoons. Last week, he totally surprised us. The week before, he'd said I might be able to go home a little early. Last week, he said he'd probably release me in two weeks! (April 23). That's a full month early. I'd see him every two weeks, alternating with my local oncologist so I'm still seen weekly by someone. Then, in mid May, I come back for a 3 day, +90 marathon that I'd have normally had spread over a week or two, was I still living in Tampa. All this, of course, hinges on no problems surfacing in the next week and a half.

I got my first weekend at home last Friday - Sunday. What a great treat that was. I feel like I healed a month's worth in that three days. Spent time with some of the family, went to our favorite restaurants, slept in my own bed, and after 60 straight days of showers, had a tub bath. It's amazing how important those little things are. Also had a nice visit from Ernie Wu, a truly great and caring man. In the past two years, I've learned a lot from him about how to treat other people with the significance they deserve, and it was a real treat to spend a little time with him.

Then it was back to Hope Lodge, to find out both A/C and refrigerators were on the blink. We've survived, and A/C is back on tonight.

Given where I am, and who I see every day, and especially given the sad events of last week, (see Cure post), I feel truly blessed to have made it this far with such great results. I'm walking between 1.5 and 2 miles a day, eating well, enjoying my time with Sandy, and can feel myself getting better every day. I thank God every night for each of you who are supporting me so graciously, and I treasure the various communications I get from so many of you.
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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