January 5, 2012

Happy New Year. It’s been a long, stressful, and exhausting fall and Christmas season. Let me begin with a quick recap of what happened over the last few months, since many of you have been kept out of the loop, sometimes on purpose and sometimes out of my being sick of talking about my medical problems.

In August my hemoglobin began to drop precipitously. As you may recall from the scattered posts around then, this was a mystery. It was posited that it was due to a nutritional deficiency, failed bone marrow engraftment, drug interactions, and even a recurrence of lymphoma. All of these possibilities were ruled out one by one as time went on and various treatments, tests, etc. were conducted. In the meantime, I received multiple units of blood twice a week which made it very hard to have a life and to recover. While all this was going on, I received news from my disability insurance that my short term disability claim was coming to an end in November and they had denied my claim to go out on a long term plan I own. They had wrongly denied my claim on the basis I had a pre-existing condition, even though when I had purchased the coverage I was told at there was no pre-existing condition clause. I had to file an appeal and let them sort out their mistake. It was a very frustrating experience. I can’t express – without going into fits of swearing and hitting things – how fucked up this whole thing was.

As if my newest medical setback and going to the verge of all out war with insurance wasn’t enough, my short term disability ran out and I was in danger of losing my health insurance. So with no other choice I went back to work with the doctor’s reluctant blessing. I was happy about the chance to get back to work. I hoped that the chance to get back and be around my old coworkers, have a very structured routine, and be close to my medical care would help resolve some of the issues that were plaguing me. Unfortunately this wasn’t the case. I began to experience even more problems after I returned to work, with my hemoglobin dropping faster than before, skin rash and irratation, severe diarrhea, and fatigue so bad I felt like I was going to pass out every time I stood up, more doctor’s visits ensued. I found out I had cataracts in both eyes from years of steroid use and I needed glasses. I was hardly able to make it through a full day of work. I was scheduled to have a port placed in my chest to facilitate easier blood draws and IV transfusions. My veins are completely blown out and utterly useless so having an implanted vascular port is the only option. And on top of that I was having so many follow up appointments that I was only at work, it seemed, for like 2 or 3 days a week. Finally, after 3 weeks of this, my doctors said I really needed to be back out on disability. When a doctor comes to you and the first thing he says is you NEED to be out of work, you listen. So in mid November I had surgery to place my port and went back out on disability.

I found out in late November or early December that the insurance company reversed their decision and that they had royally screwed the pooch. Needless to say I was very unhappy, but also relieved that I had prevailed in the end.

I also found out that the reason my hemoglobin was so low and my body was destroying the blood was a major flare of chronic GVH. My steroid dose was increased to 60mg daily and I began to show some improvement within a couple of weeks. I am by no means out of the woods though. I continue to need blood every couple of weeks, I’m still very fatigued, and while my skin and GI are doing better, they’re still healing and the diarrhea are in the process of resolving. I also had a prolonged sinus infection in December, which did not help in my recovery at all.

So there you have it. A summary of my fall and holiday season from the medical side of everything. With luck I’ll remain on the path to recovery. The good news is that with GVH flares they become fewer and further between and less severe as time goes on. So with that’s a positive thought.

Since going back out (again), I’ve brewed a batch of beer. Tom got me a beer brewing kit for my birthday and I made an IPA. I don’t know how it came out yet, since the earliest I could try it was this past Sunday and I had just gotten back from Christmas. For Thanksgiving we went to Raleigh to spend the holiday with friends and to be close to Duke in case there were any medical incidents. It was fairly relaxing. I felt well enough to attempt a burger challenge at a restaurant called Mojoe’s. The challenge was fairly simple and not much of a challenge. I had unlimited time to eat a 1LB burger. So watching the USC-Clemson game, I ate my burger, a side of onion rings and drank several teas. Now I have my picture on the Mojoe’s wall of burger fame. But after eating the burger I felt uncomfortably full for the rest of the night.

The time between Thanksgiving and Christmas was largely uneventful. After the frenetic pace of the fall, I was glad to be able to sit around and do just about nothing. For Christmas Alex and I drive to my parent’s place in VA. I would like to say that it was relaxing, but it wasn’t. I had some whiskey at a Christmas party and spent the next few days with terrible knee pain as a result. It was awful. I haven’t had knee pain and swelling like that since I was in the hospital last year. I think it was a combination of the whiskey and steroids, which tend to break down the joints and cause arthritis. Alex and I then met up with her parents in Baltimore since we missed them over Thanksgiving and a couple of days after Christmas, we drive back to Charlotte so I could get a blood transfusion. Then it was on to a plane for New Years in Las Vegas. I don’t know what I was thinking agreeing to so much traveling, but since getting back, I’ve been beat. Vegas was alot of fun though. We stayed at the Embassy Suites off the strip, did some gambling (I played some blackjack at the Luxor and $11 at the airport slots our last day), we saw a few of the casinos and ate at the buffet at the Bellagio. The Bellagio buffet was way fancier than I had thought with Kobe beef, quail, fresh sushi, excellent desserts, lots of fresh fruit, prime rib, an excellent Asian station and an Italian station that I missed. For New Years we went to a tapas bar and shared tapas and an entree of Paella. We then went back to the hotel and got to watch the fireworks over the strip from the hotel bar. It was the perfect place to do so. There was a 12 story window overlooking the strip and none of those annoying “other people” to get in the way. Plus we got to sit down inside. Vegas was surprisingly cold at night. So we had all the fun of seeing the fireworks without the hassle of freezing with a billion drunks. We flew back to Charlotte on the 1st and since then I’ve been trying to recover from the whirlwind that was Christmas and unpacking my stuff. Fortunately I don’t have any plans for the whole of 2012 so I can recover from this latest adventure in medicine and a new city.

On a related note, CBS Evening News featured Stupid Cancer on its national broadcast last night. Click on the link to watch the whole story. CBS NEWS

Stay tuned for an update in a bit.

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One thought on “January 5, 2012

  1. You sure earned a couple bottles of that home-brewed IPA. Glad you got to have a fun Vegas trip after all the crap that came before. Here’s to a less exhausting 2012.

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