On Monday I had the surgery to have the port put in, which was remarkably awful. It wasn't under a general anesthetic, just local anesthetic and sedation, which meant that I was aware. Especially when they fucked up and didn't give me the sedation before they started cutting (although I did have the anesthetic), which was pretty upsetting. And then they didn't actually give me enough sedative until about halfway through the operation, so I could feel them actually putting the port *under my skin*, which was the grossest thing in the world.
Don't get cancer, you guys, the doctors do horrible things to you.
On Tuesday I went for a consultation with Dad's dentist, in the hope that I could wait another ten months before I got my wisdom teeth out. Being partially erupted, they could be potential points of infection while I'm immunodeficient during chemotherapy. He suggested instead that he take them out right away, which I agreed to in a terrified, mousy kind of way. So with very little preparation, he shot me up and gave me some nitrous oxide, then just yanked the damn things out. (It was more complicated and grosser than that.) Poor Dad stayed in the room and held my hand the whole time. I thought they were going to kick him out after the Novocaine kicked in, but they never did.
The aftermath of the wisdom teeth was miles worse than the aftermath of the port. It really hurts, it hurts all the time. I'm taking oxycodone and Extra-Strength Tylenol (homemade Percocet!), and it still pretty much hurts all the time. I wish I could eat a cheeseburger.
Thursday, May 27, 2010
Thursday, May 20, 2010
Treatment and preparation
I met with my doctor on Monday. He seems all right, confident and experienced and maybe a little arrogant, but not in a House way. He looks a lot like Adam Arkin, so I'll call him Dr. Shutt. I met my nurse coordinator, too, the Salty Nurse, who is pleasant and obviously very good at her job. She has a really heavy Maine accent. I like her. She's obviously not going to be putting up with any self-pitying nonsense from me, which is fine. Good, maybe.
There was no fucking good news at that meeting, though. I learned that I am definitely going to have to have a port implanted in my chest, which is a little plastic bubble you can stick needles in, with a lead going directly into my vena cava. It's necessary because the chemotherapy drugs are so extraordinarily toxic that they'll burn through the little veins in my arm and poison the tissues around them. That surgery is going to happen on Monday, and while the surgery itself is minor, I am losing my goddamn mind about it. I really don't want some horrible thing inside me, showing through my skin and reminding me and anyone looking how defective I am. Bad enough my hair's going to fall out.
I also learned that I'm going to have to spend 3-5 days in the hospital every time I get high-dosage methotrexate, too, so that's going to be 6-10 days every five weeks. Methotrexate apparently turns to crystals if exposed to acid in the kidneys (crystals = ruined kidneys, I guess?), so they're going to pump me full of alkali and saline and not let me leave the hospital until I've peed it all out.
Also, Dr. Shutt made me switch to two crutches, which is really inhibiting my ability to get around -- I have to ask for help every time I want to drink some water in the other room, for Christ's sake. On the bright side, my arms and abs look better already.
Fortunately, I don't mind any of this so much as I did at the time I heard it, as the doctor wrote me a prescription for oxycodone. The first couple of times I took it I felt euphoric, then sleepy, then catatonic, but now when I take it I just feel sleepy. (The euphoria led to some embarrassing, overly truthful conversations, but I did enjoy it while it lasted.) It also makes my troubles seem vague and far away. Actually, my knee is twinging so I might go take another one right now.
There was no fucking good news at that meeting, though. I learned that I am definitely going to have to have a port implanted in my chest, which is a little plastic bubble you can stick needles in, with a lead going directly into my vena cava. It's necessary because the chemotherapy drugs are so extraordinarily toxic that they'll burn through the little veins in my arm and poison the tissues around them. That surgery is going to happen on Monday, and while the surgery itself is minor, I am losing my goddamn mind about it. I really don't want some horrible thing inside me, showing through my skin and reminding me and anyone looking how defective I am. Bad enough my hair's going to fall out.
I also learned that I'm going to have to spend 3-5 days in the hospital every time I get high-dosage methotrexate, too, so that's going to be 6-10 days every five weeks. Methotrexate apparently turns to crystals if exposed to acid in the kidneys (crystals = ruined kidneys, I guess?), so they're going to pump me full of alkali and saline and not let me leave the hospital until I've peed it all out.
Also, Dr. Shutt made me switch to two crutches, which is really inhibiting my ability to get around -- I have to ask for help every time I want to drink some water in the other room, for Christ's sake. On the bright side, my arms and abs look better already.
Fortunately, I don't mind any of this so much as I did at the time I heard it, as the doctor wrote me a prescription for oxycodone. The first couple of times I took it I felt euphoric, then sleepy, then catatonic, but now when I take it I just feel sleepy. (The euphoria led to some embarrassing, overly truthful conversations, but I did enjoy it while it lasted.) It also makes my troubles seem vague and far away. Actually, my knee is twinging so I might go take another one right now.
Sunday, May 16, 2010
Waiting
Tomorrow I'm going to meet with my new oncologist. My dad picked the facility because it's close and convenient to his house, well regarded, and because they have a sarcoma expert on staff. Sarcomas are somewhat rare, accounting for only about 1% of cancer diagnoses; sarcoma specialists are correspondingly rare.
I'm really uncomfortably nervous about it. When I was in Korea, there were so many other things to concentrate on (How am I going to be able to get to the facility? Is anyone there going to speak English? Will I be finished before the subway gets jammed?), I didn't really have much energy to spare getting nervous about the appointment itself.
There's also that I've been anticipating this appointment for weeks now, almost an eternity considering that hours have seemed like days since I was diagnosed. This isn't another informational meeting, and it's not another diagnostic test; tomorrow we're going to decide exactly how much poison I can tolerate, how much of my bone the surgeon is going to rip out of me. What we discuss tomorrow may decide whether I live or die.
I'm really uncomfortably nervous about it. When I was in Korea, there were so many other things to concentrate on (How am I going to be able to get to the facility? Is anyone there going to speak English? Will I be finished before the subway gets jammed?), I didn't really have much energy to spare getting nervous about the appointment itself.
There's also that I've been anticipating this appointment for weeks now, almost an eternity considering that hours have seemed like days since I was diagnosed. This isn't another informational meeting, and it's not another diagnostic test; tomorrow we're going to decide exactly how much poison I can tolerate, how much of my bone the surgeon is going to rip out of me. What we discuss tomorrow may decide whether I live or die.
Thursday, May 13, 2010
Osteosarcoma
Since the first of the year I've been having pain in my knee. I went and saw a Kaiser doctor and they told me it was a sprained MCL. I ignored it for three months, then saw a doctor in Korea. He prodded it, then got an x-ray, then turned all gray in the face and ordered an MRI. That hospital referred me to another hospital for a biopsy, but they gave me a preliminary diagnosis of osteosarcoma, a rare cancer that arises in the bones. The biopsy confirmed it.
I'm shitting it. Osteosarcoma is not the deadliest cancer by any means, but I have about a 30% chance of dying over the next five years. (That's up from about a .75% chance, according to an actuarial table I just looked up.) The chemotherapy regimen is also pretty intense, and could kill me, or wreck my heart or kidneys, or give me leukemia. Even if it doesn't do any of those things, it is definitely going to make all my hair fall out and make me sick for months and months. The internet doesn't have any first person experiences of people having treatment for osteosarcoma beyond "And then I had chemo and it made me sick and sad," which I guess is why I'm vomiting up this blog. At least the next poor bastard frantically Googling "osteosarcoma blog" will have a little information to depress her or himself.
I'm shitting it. Osteosarcoma is not the deadliest cancer by any means, but I have about a 30% chance of dying over the next five years. (That's up from about a .75% chance, according to an actuarial table I just looked up.) The chemotherapy regimen is also pretty intense, and could kill me, or wreck my heart or kidneys, or give me leukemia. Even if it doesn't do any of those things, it is definitely going to make all my hair fall out and make me sick for months and months. The internet doesn't have any first person experiences of people having treatment for osteosarcoma beyond "And then I had chemo and it made me sick and sad," which I guess is why I'm vomiting up this blog. At least the next poor bastard frantically Googling "osteosarcoma blog" will have a little information to depress her or himself.
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