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Archive for May, 2010

When I started this blog, I told myself that I would not censor myself or put on a happy face as my public persona. Up until now, however, I haven’t felt like writing a blog post unless I was already in a pretty good frame of mind to begin with. I’ve imparted quite a bit of bad news over the last couple of months, but I’ve only ever written about it when I was prepared to speak of it pragmatically and mostly positively. Perhaps it’s because I’m in a 10-week window of no new information until my next appointment, but I’m starting to get fairly frustrated.

I’m frustrated because my meds are not working like they should. I’m frustrated because the meds cause other symptoms that aren’t great to deal with. I’m frustrated because I haven’t worked in almost 18 months and I’m just plain bored. I’m frustrated because I have an incurable, fatal disease. I’m frustrated that the doctors can’t do more or say more for me. I’m frustrated that I stumble around medicated and logy all day long. I’m frustrated that I can’t get more exercise and actually spend most of the day on my ass. I’m frustrated that the meds and ass-sitting are causing me to gain weight. I’m extremely frustrated that a 45-minute walk puts me flat on my back for a day and a half. Crap, I’m just frustrated.

I’m on three medications that are supposed to lower my tumor-caused high blood pressure and relieve the rest of my symptoms. We still don’t have it right. They lower my blood pressure for sure, but my pulse is still way too high (there is nothing more unnerving that constantly being aware of your heart, and how hard it works), my equilibrium is iffy at best, the headaches come and go at will, my heart and back just plain hurt at times, the tingling around my eyes sockets is just plain odd, and the twitching of my arms and legs in bed is enough to want to be swaddled. All in all there is just too much adrenal hormone and drastic medications coursing through my body. I miss feeling good and right.

Today I came home from Maggie’s mid-morning and arranged for my clothes washer to get fixed. And then I took a nap. Then I made some lunch, and took a nap. After the repair guy left I threw in some laundry and took a short nap. Eight hours later I’ve managed to wash, dry, and fold three small loads of laundry and I am completely wiped out. I’ll be fast asleep as soon as I post this diatribe.

I’ve recently come to a realization that I don’t like. As much as I complain about the meds, they are certainly helping a lot more than when I was on nothing and even more miserable. But even the level they are working at is contingent on one major thing: I DON’T DO ANYTHING ALL DAY! I can handle about 90 minutes of the most basic activity and then I am down for the count. Of course this is better than before when I was always down for the count, but not much. So inasmuch as the meds work, they only work for me who doesn’t have to do anything all day. If I had a job, if I had to be on my feet all day, these meds would be a colossal failure. That stinks.

I’ve got tumors around my spleen, liver, kidney, pancreas, and diaphragm. Even if they don’t grow in size by July, I still have these side effects of them being there in the first place. I still think that I am doing pretty well overall mentally, but this is not fun. Not fun at all.

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It’s been exactly one month since I started this Pheo Blog and a good couple of weeks since I posted anything of substance here. A good part of the reason for that is that things have been fairly quiet on the health front. My Mayo doc has been working with me on my meds so that I now take three different medications to decrease my blood pressure as well as mask the symptoms of the hormones so that I can function relatively well. The side effects of the pills are a bit annoying, but overall it is great to be vertical and relatively pain-free for hours at a time. I still take 2-3 heavy naps per day, but all in all I am doing OK.

Although the health front has been pretty quiet, everyday life has been filling in with its own distractions and annoyances. Within a 10-day period I had to turn down a potential job interview, the battery died in my car, the entire car stereo died, my iPhone went dead, my washing machine broke and decided to spill water all over the laundry room floor, my cable modem completely died, my backyard canopy disintegrated, and my insurance company denied a 5,000 dollar PET Scan as “medically unnecessary.” Normally, all of that would have sent me right over the edge, but for some reason, it was kind of nice to worry about normal problems for a while. It gave me something else to focus on other than my stupid tumors and medications. Of course it certainly helped that my sister Tammy and her husband Don came up to visit me from Myrtle Beach for a long weekend. Apple gave me a brand new iPhone for my troubles (fun!) and I also spent close to a week in the Tampa Bay area soaking up some much-needed vitamin D. Plus Maggie and I leave for Scottsdale shortly for a week of R&R for me, and work for her.

Getting myself set up in the state’s high-risk insurance pool is my latest project. As I’ve mentioned before, my COBRA benefits expire on June 30th and I am somewhat busy tracking down all of the required HIPAA certificates and filling out applications in preparation of my July 1st transfer to this program. It turns out that I am not able to go on the new national ’pre-existing condition’ program just signed into law as Minnesota already has their own program. Judging from the bills I’ve already seen this year, this will be a real financial lifesaver for me moving forward.

My next appointment at Mayo has been set for Tuesday July 27th. I have three appointments that day. A blood draw to test my plasma metanephrines, an abdominal MRI to assess the status of my tumors, and a follow up late in the day with my doctor to discuss the results and decide what the next steps are. If they’ve grown in size or even multiplied then I’ve got new troubles and decisions to make. If they are relatively static then I hope to hear that I’ve got some real time to breathe and maybe even look for a new job.

Now wouldn’t that be nice? Float On

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Station Identification

This blog will return after Medecine du Soleil.

Sorry for the awful French.

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