October 2014

Trev-MUNils_trevmun wrote
on October 19th, 2013 at 10:44 pm
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I've hit the big 30.

So, the crisis with the DMV has been averted. I won't be stuck at Cameron without a license. The cost of it was having to push back all the appointments the Cancer Center made to the coming week, but that worked out in my favor. I was able to contact MD Anderson, have CCMH send them all records and data from the point they discovered the cancer to the current time, and get some solid answers.

I contacted the Proton Beam Therapy Center directly rather than going through MD Anderson's Lymphoma Center, but they have been very helpful. More helpful than the Lymphoma Center, I think. The nurse I spoke to offered to take the data sent by CCMH and have Dr. James Cox (he's the first doctor in this video: http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=communications%2Fconfig%2Fpencil_proton_cfg) take a look. It wasn't a formal second opinion (that would require me to fly down to Houston and make an appointment), but they agreed with CCMH's plans to put me on a full six cycles of ABVD. If the tumor responds to treatment but doesn't completely disappear, the Proton Beam Therapy Center could mop up what's left. Depending on how much is left.

The nurse also offered to forward that data to the Lymphoma Center, and I agreed. The Lymphoma Center never contacted me; I had to call them, and they sent me a digital mail-in review packet to fill out. They'll probably want me to come down to Houston to get a second opinion or discuss possible alternatives to ABVD.

At this point though, I think I'm going to go ahead with getting the chemo at CCMH. I at least know now there's no alternative. I looked into an alternate chemotherapy regimen, Stanford V, but I can't really tell if it would put me at more or less risk for permanent side effects than ABVD. It also looks like they specifically use standard radiation therapy to mop up what remains in Stanford V regimens. I wonder if MD Anderson does differently, if they DO use Stanford V? Alas, I'm not going to get that answer by the time chemo starts.

Beyond that though, I've got something to say:

I'm seriously touched by you guys.

The amount of support everyone's shown me once word about the cancer got out has left me flabbergasted. Even from Gravity LLC, the Facebook announcement they've made concerning what's happening to me, it's just ... WOW. Until this month, I was convinced that I'd faded into obscurity given my inability to make good on promises about updating Ragnarok Wisdom. I seriously underestimated how much concern and compassion you all have. Especially to the point that a lot of you have been badly wanting to help me out with the bills. I've had a number of people personally request that I open a fundraiser, and I've seen open discussions about holding one for me.

To get all Tolkien geeky about it, it's like being at the Battle of Pelennor Fields, thinking it's hopeless and you have no one to aid you, then seeing the Rohirrim show up on the horizon ready to assist.

I've been trying to assess how much money I would need to have on hand to pay for all of this. but there are a lot of unknowns. Hospitals like to charge different prices for the same medical procedure and supplies; a hospital a few blocks away could charge ten times the amount as one you're visiting. There's also the question of whether or not I'll be one of the Unlucky 20% ... the ones whose tumors don't respond to treatment and are in for a desperate battle to just prolong their lives by a decade or more.

But for now, I think a good ballpark estimate is that the six cycles of ABVD and related supportive care, office visits, yadda yadda yadda, will cost $10,000 after insurance. I can probably expect Proton Beam Therapy to cost $12,000 after insurance. Since MD Anderson estimates a seven week stay for Proton Beam Therapy, I can expect to spend anywhere from $1,000 to $5,000 for a stay at a hotel during that time. Depending on where I stay ... I haven't looked into it seriously yet.

So ... I'd need $22k to start. But it could be way more, or way less. I don't know yet. If a fundraiser could pay for even half of that it would be a great burden lifted off my shoulders ... I still need to think about college, after all. I have to remain a student at Cameron to get insurance and the Federal Pell Grant; probably a full-timer. Depending on how things play out though, I could wind up going to MD Anderson during next summer to mop up whatever's left of the tumors, so maybe it won't be an issue.

It's a lot to think about. But I'll see about opening a fundraiser for anyone who wants to pitch in and help me out. I would greatly appreciate whatever assistance you all could give me.

For now, that chemo can't start soon enough. I itch like crazy a lot of the time now, even while taking antihistamines (so far I've tried Zyrtec, Claritin, and now Benadryl). I've torn open my skin almost everywhere, and now I look like someone attacked me with a cheese grater. At this point ... I'd take chemo brain over this itching, because it's so relentless you can't focus on anything.

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[User Picture]From: veldurn
2013-10-21 12:19 am (UTC)


And now I feel like such a tool.

I've been seriously stressing over what to say about this since this past Wednesday. (I clearly don't get on LJ enough, since that's when I first heard of the situation.) It's still a horrible situation for you to go through. I wouldn't wish this on my worst enemy. But knowing that you've seen that kind of support already, well, now I'm just a fool for my silence.

Seriously though, keep us all posted, even we lurkers. Time for words may slip away from us, but we can still find ways to lend a hand.