International Pirate Day - April 22

Ahoy me skirvy mates! Today be International Pirate Day. You all must do a bit of pillaging, and drink some rum for your mate Whilley Jim Jim as he can't.

Drug Cocktail

You wouldn't believe the number of medicine bottles I have on my table right now. It's crazy. It takes 20 minutes just to sort out three days worth of meds. It's crazy. There are over 20 bottles, with a total of 15 different pills each day. The heavy stuff starts tomorrow.

Transplant Next Week!

I just wanted to clear some things up here. I think I've mentioned this before, but I'll give a more through explanation of what a stem cell transplant is, and why it's not the thing that George 'Dubya' Bush and his cronies are trying to outlaw research on (although this doesn't make outlawing research on it okay).

The treatment that I will begin is a few days, called a Autologous Stem Cell Transplant, is a more modern term for the bone marrow transplants that Fred Hutch helped develop a couple decades ago. What happens in these types of treatments is that high does chemo and/or radiation is needed to kill every last remaining cancer cell, but chemo at these high doses also starts killing other healthy cells. The first healthy cells to go are the blood producing cells in the bone marrow. Everyone naturally produces a type of stem cell that has the ability to turn into any type of blood cell. Red blood cells, platelets, and white blood cells are among the most important. Next to go are other rapidly reproducing cells like hair, and mucous membranes. After chemo, the body is left unable to produce any of the different blood cells, and the bone marrow must be rescued.

There are two main ways to do this. They can either take closely matching bone marrow from a donor, or take it from the person needing the transplant to be frozen and used later for the rescue. The second is the Autologous transplant that I'm having.

I began my latest treatment in January, with two three week cycles of chemo.
This served two purposes; to get my cancer back into remission, and to stimulate stem cell growth. From what I understand, the immune system has to be first suppressed, then stimulated to get it to produce the needed stem cells, and get them to enter the blood stream before they've had a chance to morph into other cell types. The goal for me was to gather about 5 million stem cells, which was expected to take a few days, especially when the test the day before my collection revealed fairly low counts. The next day however, I kicked ass, and blood test revealed much higher counts. I went into the apheresis unit (with machines like a kidney dialysis machine) for 4 hours, and was able to collect just over 10 million stem cells.

So here I am now. The Docs just got finished deciding what they wanted to do with me. Before, I said on various profiles that I was a research dummy. Now I really am. I've signed up to be part of a few research studies and have blood and various other bits of me frozen and stored so that researchers can analyze it and see what's wrong with me.

What the Docs have decided is to use a set of three drugs, Busulfan in pill form, and Melphalan and Thiotepa by IV. All three suck. None are good for you, and all have potential long term side effects, but it's what I have to do.

I get Busulfan on Sunday, Monday and Tuesday, Melphalan on Wednesday and Thursday, and Thiotepa on Friday and Saturday. Sunday is a day off, and probably about when the suffering begins. Monday, I receive my stem cells back, and that's it.

Except that I have to recover. That will take about a month? May require a short hospital stay, and will be really sucky. I know about what to expect, but I'll get to that stuff as it comes.

I hope it all makes sense. The most misunderstood part is that it's not actually the transplant the cures the cancer, it's the drugs that necessitate the transplant. Interestingly though, a transplant does 'reset' the immune system, which is useful in autoimmune disease where the body's immune system attacks it's own good cells, and it also seems to have the potential to cure type one diabetes.

I also hope you understand why this isn't a 'controversial new treatment' as I've heard it called. But this doesn't mean that the type of stem cell treatment that Bush and his cronies are talking about doesn't have the potential to help me as well. Treatments from the work that California is funding, and the US government should fund as well, could very well save the life of myself and others in the future.

I guess my apartment warming party will have to wait. It's probably going to turn into an apartment cooling party. I can have visitors as long as you're clean and not sick, so please, don't be afraid to come visit me. I'm at 225 32nd Ave E, Seattle, but give me a call (253-691-1440) before you come :-)

I DO have Medicaid now!

Last thursday, right after I got the medicaid papers in the mail, I called the housing coordinator at SCCA, and she contacted her people, who contacted their people, who contacted me on Friday, and I now have an apartment!

Amazingly, it's a 3 bedroom, fully furnished apartment in Magnolia, close to a couple neighborhood caffes and other shops, fairly close to a Safeway, Trader Joe's, a food coop, and Grocery Outlet. The apartment has a big screen TV, and a smaller flatscreen TV in my room, a gas fireplace, washer and dryer, dishwasher, big new side by side fridge, gas stove, and includes, linens, dishes, baking and cooking hardware, and even a few condiments. I have to supply it with food, soap, diswasher detergent and washer degergent, and that's about it.

I think I really do have Medicaid now

I just got a bunch of stuff in the mail from DSHS explaining my benefits, but without actually giving me any explanation. I really don't know what it says, but included with it is a Medicaid card. So I guess I'm covered now. I'll call about an apartment in Seattle tomorrow and see what happens.

Bike for Tristan

Bike for Tristan

I've been helping two friends, Nick and Tristan with bike shopping for the last few weeks. Nick doesn't have his license yet, so he's not looking as hard, but Tristan got his license last year, so he's been really looking for a bike now that the weather will start getting nice. Since I've been home a lot, I've had a lot of time to keep my eye on Craigslist. Two weeks ago, Tristan and I found a really nice bike in Centrailia, but due to a retarted misunderstanding, it had already been spoken for when we got there.

A couple days later, we found a Triumph Bonneville advertized for $700. It turned out that an old guy's daughter had put it up for sale without researching what the bike's value was. So he was really looking at getting around $1200 to $1500 for it. It was probably worth it, and had a lot of potential, but the amount of time and money to get it on the road was too much for Tristan.

So when I got home today, I found an ad on Criagslist for a Yamaha XS750 Triple, with a picture of a nearly perfect bike, for only $400. It was posted at 4:15, and I was calling at 6:00, usually more than enough time for something that looks that good to sell. It was in Bellignham, with a clear title, and he said he'd deliver. Really too good to be true. So I called, he still had it, it really was $400, and it really did look that good. Really too good to be true.

Now Tristan it a bit hard to get ahold of when you really need to. He has a cell phone, but it doesn't really do much. It's a Sweedish prepaid phone that he can't make calls with, and can only text certian people with. So I sent a bunch of emails to him, called his sister, emailed his sister, texted his sister, and finally got a call from him and agreed to meet in Seattle.

As soon as my dad got home, I left to pick up Tristan and head to Bellingham. We got there at 9pm, and the bike was perfect. Really. Only one really small scratch on the tank that can eaisly be polished out, a tiny dent on a fender, and a small scratch near the seat trim. For a bike that's almost 30 years old. The owner is a college kid from a very well off family, who can afford to buy a new bike and sell his old one for next to nothing. He knew it was nice, and I think he just wanted to see the person that it went to to make sure they'd take care of it. He kept saying "don't drop it, take care of it". Really really crazy.

So Tristan and I are going to do a bit of work on it on Friday to get it back on the road. It really wont need much. Until then, here are some pictures right after we got it home. It's going to live at my house until Tristan trusts himself enough to ride it.

Nick, you're next!

Tristan's Bike

Run in with the law

Today dad and I ran up to Federal Way to get some stuff and advice for my Beetle, and on the way back, a cop that was right next to me at the light, got behind me and turned on his lights. I had no idea what I could have done. There's no way I could have gotten up enough speed; I wan in a Bug. All my lights and signals worked, and my dad was even wearing his seatbelt for once. But it wasn't my dad's seatbelt habits he was worrying about; it was mine. As soon as he looked at me, he realized that I was wearing my seatbelt, but I had it under my arm. He told me that I have to have the shoulder strap over my shoulder. I told him I wasn't because I had a catheter in my chest, but the blank look on his face told me he didn't know what I was talking about, so I said, "well, you wanna see?" and before he had a chance to answer, I pulled down my shirt and showed him my Hickman. The quick jump back that he took said "no" so I said, "Oh, I guess you didn't want to see it", so he just ran my license, and let me go. Dad still doesn't wear his seatbelt all the time though.

Scrubs

Well, it turns out that medicaid is going a lot slower than they told me it would the first time I talked to them. I don't know why one person told me one thing while another person told me something completely different. That's red tape I guess.

Last week though, I was involved in my own little episode of Scrubs. For those of you that are not familiar with the show, you can see it on Comedy Central every night around 7pm, and Thursday night on NBC. Watch it. You'll like it.

So it started tuesday two weeks ago. I had an appointment to have a Hickman line put in for collection of my stem cells that week. A Hickman line is type of catheter that enters in the chest, tunnels under the skin up to the collar bone, then enters the jugular to the heart. It's a way to get high volumes of liquid in and out of me. In this case, that liquid was blood.

So I went in early Tuesday morning and got prepped for the surgery. I'd heard a few people talk about their Hickman lines, and Dr. Hickman, but from my research on it, I found that Dr. Hickman had invented it in the early 70's, so I thought that there's no way he'd be doing it. Wrong. We asked why it was called the Hickman line, and the nuse said that we'd have to ask Dr. Hickman, but he'd probably say that it was because they thought it wouldn't work.

So the nurse was prepping me up, but she said that she'd leaving shaving my chest to Dr. Hickman so when it was itchy growing back, I could blame him instead of her. Well when he came in, he handed the shaver directly to my mom and said, "You made this handsome man, you shave him", so my mom shaved the surgery site while he stood there with a big roll of tape cleaning up the clippings.

So they knocked me out, cut me open, and stuck some tubes in me, I woke up, recovered, and went upstairs. Here's where having a hose hooked up the my jugular comes in.

For the previous 5 days, I'd been conditioning myself by giving myself shots of an immune system stimulant to cause stem cells to enter my blood stream. The goal is to collect 5 million stem cells that will be given back to me after conditions for the transplant. So they hooked me up to this machine that's kind of like a kidney dialysis machine and started pumping the blood out. They thought it would take several days to get to 5 million, but I surprised everyone by getting 10 million stem cells on the first four hour session.

So up to this point, everything was going smooth, and I went home around 5pm. I wasn't even really that tired from it all because I slept during a lot of the collection, so I stayed up fairly late. At around 12 that night, I was sitting in the chair watching TV, and just getting ready to go to bed when I looked at my shirt and noticed a small spot of blood. When I looked at the bandage, it was soaked with blood. I called the late night number for my clinic and talked to a doctor who told be that if it wasn't dripping, then I could just bandage it up and wait until morning. That's what I did, but at around 5:30am, I noticed that it was again quite soaked, so I got up and heard that dad was awake, so I knocked on his door with my hand over my shirt, and said that I either needed to go to the hospital emergency room or to the clinic in Seattle. When he asked me why, I removed my hand from the bloody shirt, which made him kind of jump back a bit, and we left about 15 minutes later.

Armed with a fresh bandage, I arrived in Seattle at about 7:30 and got a nurse to look at it. She couldn't do anything to make it stop, so she send me down to Dr. Hickman to take a look at it. He said that everything was fine with the line itself, and that I just needed to put pressure on it for a while. So I laid there with a sand bag on me for a while, and that seemed to stop it. A blood test showed that I was low on platelets and they decided that I needed some more, so what we thought would be a 2 hour trip became an all day thing.

Dad and I grabbed a bite to eat at a local cafe, and came back around 1:30 for my platelets, which took about 2 hours to get into me, and when I was done, I should have been all patched up and ready to go. Except for a pesky new blood spot on my shirt.

So at this point, the nurse was starting to get concerned and she got Dr. Hickman to come back up. After she paged him she started talking about how great he is. She told be about the first time she met him, and then several years later after she moved to the clinic and he remembered her, and how he's just a great guy, and a Nobel Prize winner etc, etc. In short, he's a saint.

When Dr. Hickman arrived on the floor, I can hear his path, all the nurses stop what they are doing to say hi, see how he's doing, he's idolized. But when he walked into the room, all he said was, put pressure on it, and the bleeding will stop. This didn't go over well with the nurse. She was convinced there was something wrong with the line, and there was nothing she could do about it. "It friggin Hickman, you can't argue with that!" But I was still leaking, and she was pissed, so she called my nurse and doctor, and since it was almost 5pm they got me in at the UW hospital, where I was stiched up.

So by 6, we were out of the hospital, I'd stopped leaking, and mom and I (mom and dad had traded places at around 3) stopped for Thai food before going home. Fun day.

Red Tape

The DSHS has finally gotten all my paperwork, so now they'll have to sent it to Olympia to get it approved. The person I talked to on the phone said that it should take about a week. So maybe that will all be good and I'll get help from them.

I am also trying to work with my insurance company to get them to cover living expenses. I talked to a social worker at SCCA, and she'll see about appealing the 75 mile rule, but according to a nurse that works for the insurance company, that is a difficult thing. They basically deny them all. But, that's an insurance company person telling me this, so I really don't know what will end up working.

Getting somewhere maybe

Last Friday I got a bunch of stuff from the DSHS. They want everything. My bank statement, my work experience, letters from my last two employers, my education background, my hobbies. It's like a cross between applying for a job and going on a blind date. So I've gotten all that stuff filled out and sent in to them.

Also, a friend of mine has a cousin that works for the state determining Social Security benefit elegibility, so I called her today and asked her about this stuff. She talked to some other people in other departments for me, and is sounds like it's likely that I'll qualify for Medicaid, and that they'll get me an apartment in Seattle. There's also another program that she told me about that can help me out.

So now I get to wait again for another few days, and in the meantime, start my second cycle of chemo on Wednesday.