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.


September 14,2011

Well to make a long story short, I’ve been having trouble for several weeks especially hemoglobin. The doctors do not know why this is happening. So today they did a bone marrow biopsy to try to get an idea of why this happened. It was a disaster. I was so nervous that I couldn’t stop shaking. So about half way through the biopsy they stopped it. The doctor felt that I need to be put under in order to continue the biopsy. I think this is the last time I’ll be able to have a bone marrow biopsy as an outpatient. I’ll be going in to the Hospital at Presbyterian Main. I’m very pissed about this. I’m glad that I’m going to be under for the biopsy, but don’t like being on the hospital all that much. I’ll be in the hospital from 12 tomorrow through some time Friday afternoon. So please stop by and a say hello. You’ve got my number, just call or text ahead of time and make sure I’m there.

June 17, 2011

Again it’s been too long. We’ll start with a quick update the move on to other things, time permitting. I was told I had severe hypertension last month. That was a real bummer. It’s most likely medicine induced, but because I’m on so many, there’s no real way of telling for sure. What a pain in the ass. If it’s not one thing it’s another. So in typical doctor form, I was prescribed a beta blocker and a medicine that relaxes the blood vessels. More medicines to poison my self with. So far it’s been working and my blood pressure has come down, but it’s still not in the “normal” range. It’s still high. I’m hoping that with some exercise, reductions in medicines and the new blood pressure pills, that will all come together and bring it down. My energy is still low. It’s hard to sit here and say “I’m feeling bad” because a year ago I was much worse off, so I’m much better by comparison, but I feel like I’m operating at only 60%. Taking the time to heal and rest is necessary though. I feel like I’m slowly improving and I do feel a little better than I did a few months ago.

In my personal life, Alex and I went to Charleston last month to see a taping of “Wait, Wait, Don’t Tell Me” which is an NPR news quiz show. It was a lot of fun. If you’re familiar with the old BBC show “My Word,” it’s very similar. The format is a panel of 3 B list celebrities, who happen to be very smart, answer questions about the week’s news in an irreverent manner. We made a little vacation out of it and stayed for a couple of days. We ate at Toast, 82 Queen, Hominy Grill, and Bessinger’s BBQ. All were excellent. 82 Queen is one of the restaurants in Charleston that’s led the way to Charleston becoming a culinary destination. It serves locally produced, seasonal, low country dishes with an emphasis on fresh quality ingredients and traditional cooking methods. I was pleased because there was none of this fusion nonsense, no twists on what are stand out dishes. They just make everything fresh, local, and traditional. It was one of the best meals and best restaurants I’ve ever been to. Toast is a breakfast spot that is a bit touristy, but served an excellent sausage gravy biscuit and amazing hash browns. It’s hard to be a restaurant in Charleston these days and survive, so no matter where you go, it’s going to be pretty good, but some places are head and shoulders above the rest. Toast is a standout anywhere else, but since it’s in Charleston and the competition is fierce, I’d say it was average. We also ate at Hominy Grill. This place was really unique. It’s tucked in an old barber shop in a neighborhood in the north end of the peninsula. The dining space is small, only seating about 100 people. The line to eat there is long, and they don’t do reservations. Get there early or be prepared to wait at least 45 minutes. The food is well worth it. It was rated as one of the top 10 breakfasts in America by Esquire a few years ago, and they haven’t lost their touch. Again their gig is all local, traditional, and fresh. My sausage patty country breakfast plate was out of this world. I also was able to introduce Alex to grits, since in the low country they do them right and good grits are hard to come by. Especially when you’re out. She fell in love with them. But for some reason I’m having trouble conveying to her and her Mom they’re not at all cream of wheat. I think it’s just a regional thing. I’ll have to whip up a batch of shrimp and grits Crooks Corner style and maybe seeing how it’s made will help convey the message. Bessinger’s was the second highlight of my trip. It’s a top 10 BBQ joint according to the South Carolina BBQ Association. They serve SC style BBQ, which was pretty good. They offered two typed of sauce. SC gold sauce and what tasted like a smoky tomato based sauce, closer to Bulls Eye than anything else. I was disappointed in their collards though. They tasted bitter, as if they had been over cooked. Overall it was a good place and I’ll be going back next time I’m down that way.

Now for some ranting, raving, and general being mad. Exit now if you don’t want to know.

I read about a promotion that KFC is doing where you buy a tub of soda and a dollar is donated to the Juvenile Diabetes Research Foundation. They tried this crap a while back with Buckets for the Cure, where you bought a bucket of chicken and a donation was made to the Kommen Foundation. I was in the hospital when this began, and I’m not positive, but I think I threw something at the TV and began screaming obscenities. KFC should just shoot their customers in the back of the head on their way out the door. They’d be doing them a favor. And they should change their name to Kentucky Fried Genocide. FUCK OFF KFC. This looks like it’s a local promo, but I would encourage everyone not to eat there on principle alone. Their food is crap to begin with. If you want better tasting fried chicken, go to Bojangles or Popeyes. At least they’re honest. They don’t say “Hey, drink this diabetes causing cocktail so you can make a donation to JDRF.” What a load of bull. Have fun getting your Type 2 diabetes by drinking sugar to research Type 1. If JDRF has a shred of integrity, they’ll refuse to accept any donations from KFC.

It’s summer. So when you go outside, remember that Melanoma is the deadliest form of cancer. And one of the most common. And one of the fastest growing in terms of new diagnoses. So put on a hat, sunscreen, and long shirt. Hopefully this video will pop into your head before you go outside next time. Have fun at the beach. Just don’t be an idiot. Ladies, no one wants to date a chick who looks like a piece of poorly cared for antique leather. Same for guys.

Finally, stop poisoning yourself with regular food and start asking for organic foods at your local grocery. Yeah, it’s a bit more expensive, but would you rather have chicken that is roided out and doesn’t look like a chicken, full of antibiotics, full of chemicals that’s spent it’s whole 54 day life in a cage sitting in it’s own filth, or would you rather have a chicken that’s fed natural grains and no chemicals? I’ll take the low risk of infection to have a chicken that won’t give me cancer or a stroke, or make me super fat because it’s been messed around with by food scientists. We live in a society with a broken food system. And it’s making us sick and killing us slowly, like frogs in a pot of water slowly being boiled. Longevity is higher, but only because we pump ourselves full of medicines to counteract the damage we’ve done through a shit lifestyle and food. If you eat organic food, you’ll be healthier. You’ll get more nutrients lower your risk of diabetes, stroke, cancers, heart disease, obesity, and a bunch of other diseases. I don’t eat everything organic. I can’t afford to. But I’ve noticed I feel healthier and more satisfied after eating thanks to eating more organics in my diet. If we went back to organic farming practices, instead of coming up with more and more artificial ways to fix the broken food system, making our food more and more toxic, we could eliminate most of the health problems plaguing this country and the whole ridiculous debate over how to fix the health care system would almost be taken care of. You don’t have to be a genius to realize this, just not a politician.

May 14, 2011

I moved last Saturday. It went well. Mom had come down to Charlotte and helped me finish packing the last of my stuff. We then moved the small boxes and most of my clothes to Columbia. I picked up my truck on Friday as planned with no problems and it was loaded in about an hour and a half. There was plenty of room for my big things. We drove down to Columbia and unloaded it. So everything was down and in the apartment by 2pm. It was the smoothest move I’ve ever made. Well, almost.

I had an awful headache all night Friday night and couldn’t sleep very well. I then felt very nauseous for a bit and was up all night feeling sick with a thundering headache. Saturday morning, I still felt bad. It was like I had a hangover, but I hadn’t had anything to drink. So I “supervised” while the last of my stuff was loaded up. I felt bad that I was feeling so sick and couldn’t help. But as the day went on I gradually began to feel better and by dinner time I was feeling almost completely better. On Sunday I was totally fine. Not a fun way to spend the busy move, but what can you do?

The in-laws left on Sunday afternoon. On Monday I began some of the unpacking and putting things away. I was able to make some good progress. Somehow Alex and I managed to fit all of our kitchen stuff in our tiny kitchen. By Wednesday, we had most everything unpacked. We also went to a USC Baseball game. It was a lot of fun, but we left early. I was tired and the game wasn’t in doubt. I didn’t do much Thursday or Friday as far as unpacking. Alex finished the unpacking today.

I started a new small project that I’m very excited to work on. I bought a very nice antique straight razor at an antique store. I plan on restoring it to useable condition. It appears to be from 1900-1930 with ivory handles, steel inlay, and was made by JA Henckles. As in the knife manufacturer. The blade is rusty and dull, and the handle needs to be cleaned and shined, but it should clean up nicely. I began working on it by filing off the pins that hold it together. This will make it easier to clean and restore the blade and handles. My next step is to remove the pins with a punch and take the whole thing apart. It’s a good project to be working on. It’s small, relatively cheap, and doesn’t require a whole lot of skill. I’m not going to even try to put a new edge on the blade on my own. That’s the most complicated part of restoring a straight razor, so when it comes time to put an edge on it, I’m taking it to a professional. Overall, I’m excited to have a small project to work on. I enjoy working with my hands and this project doesn’t require a lot of heavy lifting or exertion. It might even be therapeutic.

Aside from my feeling sick last week, I’ve been doing ok. I’m still very tired. Most days I’m calling it quits about 2pm. I still haven’t been sleeping well. I’m waking myself up at night and when I am sleeping, I’ve been having some terrible dreams that leave me on edge and disturb me for the rest of the day. I have two doctors appointments this week one on Charlotte and one at Duke. For some reason, I’m feeling really anxious about them. I don’t really have a reason to feel anxious. This is really the first time that I’ve felt this way about going to the doctor’s. I just feel very much on edge, like I’m waiting for some bad news.

Well, the Sox just won against the Yankees. So I’m happy about that.