Here’s the deal: the postings that fall under “The Cancer Chronicles” category are now offline, except for the first one and a couple of random posts. I, or Trey, will explain later. I leave you with this: it’s a cool announcement and will involve all of the readers of this blog.
Oh, and Trey, if you wanted a better explanation, then you should have written this post yourself.
(this is pretty close to the actual phone call Friday)
Riiiiiinnnnnng!
“Mmmpphhhhh….”
Riiiiiiinnnnnnnnggggggg!!
“Whaaaa? Mmmpphhhhh….”
Rrriiiiiiinnnnnnnnnnggggggg!!!!!!!!
“What? Yeah? This is Trey.”
“I’m looking for Trey Barker.”
“Yeah, this is me.”
“Trey, I want to talk to you about coffins. I’m selling them. Scratch and dent coffins. Real cheap.”
“What? Sorry, I’m a little foggy, I was asleep. Been sick today.”
“Sorry to wake you.”
“Less you than someone calling about coffins.”
“Scratch and dent. Pretty cheap.”
“Sean, is that you?”
“Who?”
“Uh…nothing. Why are you calling me?”
“I’ve got coffins, real nice coffins.”
“Nice? Like Pimp My Coffin?”
“No, no, scratch and dent. I’ve been calling but no one answers their phone.”
“They who?”
“On the list. They wouldn’t answer so I called you.”
“To sell me a scratch and dent coffin.”
“Not unless you need one.”
“Uh…don’t think so but maybe check back in a few days?”
“Tell me about HauntCon.”
“Handicam?”
“HauntCon.”
“What in the fuck are you talking about?”
“I’ve got a few scratch and dent coffins, I thought I might go to the convention, see if I can sell them.”
“Why did you call me?”
“World Horror Convention…in San Francisco. Thought you might have an idea about dealer spaces.”
“For scratch and dent coffins.”
“Yeah, and at Hauntcon, too.”
“I’ve never heard of Hauntcon.”
“But you know the World Horror Convention, right?”
“My name’s on the Board’s website.”
“Right, I called from that website. No one else would answer.”
“Didn’t want to talk about coffins no doubt.”
“Right.”
“Come on, who is this, really?”
“Uh…maybe I have the wrong number?”
“Maybe. Tell you what, you should call Alan B–, owns Borderlands bookstore in San Francisco. He’s the big wheel with World Horror this year. I’m not going — health problems — but he can help you out.”
“You’re not going?”
“No.”
“Health problems?”
“Yeah.”
“So, you need a coffin?”
**********
I’ve mentioned before that my insurance company has done pretty well by me since all this started. With the exception of taking too long to decide I could do the shots at home, they’ve been pretty good.
I hate to say this, because I’m as anti-insurance premium and company as the next Red-Blooded American, but over the last two days, my insurance company has jumped to the top of my Good Guy list.
Originally, I was under the impression my monthly batches of Interferon would come automatically. Surprise surprise, I was wrong. I have to reorder every month, takes a couple of weeks to get in. So I ended up in a situation where the new meds weren’t going to be here until Monday while my current batch ran out last Thursday.
Left me with no treatment for today.
So I called the company, explained what was what, asked if I should head to Perry Memorial Hospital (and I’m I the only one creeped out by a hospital being named ‘Memorial?’) to get a treatment.
Without getting too boring, it turned into a nightmare of finances and who actually had the medicine in stock in this little town I’ve chosen to call home. Too expensive to go to the hospital. No Interferon in stock at my oncologist’s local office. None at any of the local pharmacies.
So these two women, Dawn at the insurance company and Lisa at Kirby Henning pharmacy, traded a shitload of phone calls and got me hooked up. Got me the exact meds I needed, the right syringes (remember, I don’t like the big ones…they hurt!) and all for FREE!!!
I had already paid for the next month’s worth of Interferon and at first, the single treatment was going to cost me $1000 (a week’s worth, can’t sell it in packs less than that). Then it was going to cost the 20% co-pay. Then just my regular $150 cap. Then Dawn decided that since I’d already paid the $150 for the month, she wasn’t going to let me pay anything.
Dawn and Lisa are my current favorite chicks, bending over so far backward their spines probably snapped. All for little ‘ol me.
Hell, if the coffin had worked that hard for me, I probably would’ve bought one.
Friday was my birthday.
Friday was also the last day of daily Interferon treatments.
Not quite the birthday I had planned but given the context, not bad at all. Hey, no more going to the hospital every day, no more getting stabbed (my hands look like friggin’ pin cushions from all the IVs), no more of the one nurse’s perfume.
No more of any of that crap.
I consider this the end of the first part of all this bullshit; of initial tests and surgery and what a writer friend of mine called Interferon Boot Camp, and all the rest of the bullshit that goes with being a stage 3 cancer survivor (and how odd is it to think that about yourself?).
Now we move on to the thrice weekly injections (from now until December, 2006) and I have no idea what that means. Will I be as tired, sleeping 15 hours a day? Will I be able to eat anything? Will I be as cranky and pissed as I have been?
It’s the same medicine but only three times a week rather than five, and a smaller dosage. I suspect I’ll begin to feel somewhat normal again.
On the other hand, even today (Monday, four days since my last treatment) lunch still tasted like crap. Of course, it was week old Hamburger Helper so maybe that had more to do with the food than the medicine.
It is entirely possible I’ll have all the same side effects for the next year. It’s possible they’ll be less than they are now, but it’s also possible they’ll be just as bad.
Yeah, can you see me at the jail, feeling tired and hardly able to walk, just as a drunk who likes to fight gets arrested? “Uh, excuse me, sir, I’m kind of tired, can you wait to fight until the next shift? I’d appreciate it.”
I don’t think it’ll be that bad. I think I’ll feel much closer to my old cynical self than I do now…though I suspect it’ll be next Christmas before I feel completely normal.
Here’s an odd tidbit about the injections. It might be more expensive to do it myself. Yeah, welcome to modern American insurance bullshit. More expensive to do it at home than it would be to go do it at the hospital, where I’d have to take up a nurse’s time, use an ambulatory services room, labs and registration, all the rest of it.
WTF? And insurance companies wonder why people hate them.
Last week, the oncology nurse began working on how I’d get the injections. We don’t know yet because the insurance company hasn’t returned any calls. In other words, yeah, they’ll take my money every month but won’t pick up a damned phone.
In the middle of everything I’ve been through in the last six weeks, here is the thought that makes me the craziest: I’ll never know if the treatment worked.
Thousands and thousands of dollars and it’s basically to prove a negative. Regardless of the treatment, the cancer might come back (do I get my money back if that happens?). Or it might never come back because the surgery got it all. I have no idea.
I want to say — as publicly as I can — thanks to two writers who have been absolutely incredible during the last six weeks. You’ve heard of both of them and you’ve read their books and stories, and both of them are either currently fighting cancer or are currently in remission. Without them, I’m not sure I could have done as well as I have. I realized in the last few days how much I love both of them…for things I’ll probably never be able to tell them.
(Hah, how funny is this? Isreal Kamakawewo’ole’s version of “Somewhere Over the Rainbow” is playing right now on the bookstore stereo.)
An odd thing, to be told you have cancer.
It was a simple thing. I had a bit of swelling on the right side of my neck. Like an infected lymphnode, or swollen glands from a cold or flu. Went to the doc, got some antibiotics, swelling went away. A few weeks later, it came back and I got some heavier duty antibiotics. Swelling went away.
Then it came back.
In early September, sitting in a bar in Chicago with novelist Sean Doolittle, I can remember him eyeing the swelling and making a subdued comment. No problem, I told him. Gonna get it checked out when I get home.
A bit after that, I went back to my doc. I’ve never seen a man’s eyes as big as his when he saw the swelling. It was blueberry-sized, maybe a bit larger. Pressing so hard against the nerves in my neck I had to take a few days off from the Sheriff’s Office. He gave me some steroids and hooked me up with a surgeon. Said surgeon didn’t seem overly concerned. He gave me lots and lots of statistics about how a swelling in that area almost always meant nothing. In fact, he rescheduled my surgery for two weeks after the original date because he was going to be out of town.
Not worried at all.
The surgery went fine, he said he got the entire lymphnode and everything looked clean. A few days later, my regular doctor called and asked me to come in. He casually mentioned that I should go see an oncologist.
“So there was a problem?” I asked, slightly confused and now suddenly sweaty and hot, my gut tight as a snare drum.
“The biopsy came back as malignant melanoma.”
And with that, I was ushered in to an entirely new world. One of stage 3 cancer and Interferon treatments and early diagnosis and 80 percent recurrance rates and endless weeks of weakness from chemo and — worse yet — pity from people around me.
The pity is not the worst. The worst, obviously, is the possibility of dying way sooner than I’d like (but isn’t that a possibility pretty much every day? In a world of random shootings, heart attacks, drunk drivers, strokes, etc.) But seeing the eyes of people who suddenly don’t know what to say is more than a little disconcerting. They roll out all the platitudes. “Jeez, dude, I hope everything comes out okay.”
Uh, yeah, me, too!
“You’ll be fine, don’t worry about it.”
Uh, yeah, no problem, won’t worry at all. It only kills how many people a year? But, yeah, I won’t sweat it.
Honestly, I’d just as soon they shut the fuck up. If you’re not sure what to say, don’t say anything.
But in the midst of the maddening, superficial words, there were two friends who made me laugh my ass off. I called Sean, the novelist I mentioned earlier, to let him know what was going on. He had had my new novel for a little while, reading and critiquing it. When I got him on the phone, I basically got this from him: ”Dude, you have cancer? Wow, that’s too bad because you’re novel sucks, too.”
(A disclaimer: the conversation didn’t go exactly like that, but that’s the funniest way to tell the story…writer’s license and all that.)
The other was a guy I’ve gotten to know decently well only in the last few months. Ben Atkinson, a sergeant with the Princeton Police Department. He and I talked quite a bit about what was going on with me. He took me to lunch one day and told me straight out he was worried about me. Worried about the depression I was going through in the two or three days after the diagnosis. Standing in the parking lot after lunch, he said, “I’m just worried,” and mimicked putting a gun in his mouth.
Uh…what?
Yeah, cops have better access to the easiest way to kill themselves than most people. I have, with me or in my house at all times, my service weapon. But the reason it made me laugh is because Ben doesn’t realize what a coward I am. I would be waaaaaaayyy too scared to ever kill myself. For one, my pain threshold is way too low. Hell, I stub my toe and I’m down for six months. Secondly, I’ve got too much to do before it’s time to naturally check out.
But the fact that he’d thought about it and jumped in feet first to make sure it didn’t happen touched me pretty good.
My doctor made me have a PET scan, which is a multi-hour test where you can’t move at all and are strapped to a table and then slipped into a machine, sort of like ground sausage jammed into the casing. That test was to take a look, head to toe, and see if the cancer had spread.
It came back negative. No spread, no indication of any cancer anywhere.
The Interferon treatment I have to do is cautionary. The oncologist says let’s take the drugs, do the protocol. It will soup up your immune system and make sure that if there is a handful of cancer cells anywhere in my cranky little body, they’ll die a horrible, horrible death.
Hey, better them than me, right?
Remembrance and Regrets
The Cancer Chronicles