Friday, December 24, 2010

pain for the holidays

Since I forgot to renew my opiate prescription before I left for the holidays, and since I am subsequently curled up in the fetal position at my mom's house unable to move from excruciating pain and withdrawal symptoms (watery eyes, hot flashes & chills, MONDO headaches, excessive yawning), I thought I'd post about pain.

Chronic pain. The thing that follows after cancer, but no one seems to talk about. The thing that plagues my everyday life, but doctors can't seem to figure out. Chronic pain is eating up my life.

Now, everyone's physiology and background is different. I only speak for myself. I'm sure there are miraculous people out there that go through chemo, surgery, and radiation relatively unscathed and untouched. Cancer treatment lite, I like to call it. If you fall into this category-- lucky duck-- just scroll on down. If not, let's share our experiences with chronic pain instead of masking them, as young adults tend to do in an effort to be "normal" within their peer group. Perhaps the more dialogue is opened, the more physicians and loved ones will be able to understand and help us.

My chronic pain seems to be twofold:

I have deep somatic pain due to scar tissue in my hip, where the tumor was, and right clavicle/shoulder, where lymph nodes were plucked during the Thyca surgery. This pain is dull, aching, and absolutely unrelenting. This is my main issue and the thing that compromises my quality of life the most. When untreated by opiates, as it is now, this pain consumes me-- I can't focus on anything else. I avoid physical activity completely. It just does not let up. It's maddening, I tell you.

[Scar tissue from radiation has also caused a myriad of problems for my digestive system and bladder... but that's another painful story for another painful day]

I also have neuropathic pain all over my body, though mostly felt in my joints, presumably from 8 months of chemo toxins damaging the protective sheaths around my nerves. This pain feels sharp, stabbing, and sometimes tingly. It's rather unpredictable-- I get sparks of pain everywhere from my chin to my toes. I also experience neuropathic pain around my neck incision, where nerves have been cut & damaged. The skin there is numb to the touch, but even gentle pressure creates a sharp pain.

To combat all of this I use daily opiates, light stretching, medical marijuana, and hot baths. The opiates, obviously, are the only thing I've found that allow me to live a semi-normal, semi-pain-free existence. Unfortunately, these have all sorts of drawbacks, including increased dependency, side effects (I hate the grogginess), and nasty withdrawl symptoms. Plus, they're pricey. You need insurance. You need employment. You need a functional body to stay employed. You need opiates. Etcetera.

Until now, I had no idea just how much I rely on those little orange pills to function.

Do you have chronic pain, even years after treatment? How do your doctors respond to your concerns? Have you found anything that particulary works for you?

9 comments:

Miss Melanoma said...

Thank you SO MUCH for talking about this. It feels great to read something so real. Your awesome!

-MM

Pateeta said...

God, I am so sorry for your pain. I type this (with big thumbs on a tiny little keyboard ) from my hospital bed, with complications ftom cancer and all the pain meds that go with it.

I finally got put on round-the- clock pain meds: morphine 30 mg twice a day with dilaudid to handle breakthrough pain during the day. Right now I have more bowel problems than I've ever had in my life. Last month I had an ileus, which is not quite a bowel obstruction, but pretty damn close. I came to the ER today after 3 days of nausea and vomiting, which has severely dehydrated me.

Even taking enough pain meds that would put down a rhino is not enough.

I feel your pain, dear. I pray for some relief for you. And for me.
Can't your pharmacy hook you up for a couple days?

Stay strong, and I hope you havr the best Christmas possible.

Peace,
Patty

Anonymous said...

I, too, am sorry to hear about your pain. I say that from the standpoint that I am in the same spot as you, daily trying to figure out how to handle the pain. Yoga helps, but afterward there is more pain than before. I smoke a lot of pot, which is not legal in the state where I live, but it's really the only thing that eases it without serious side effects, so I'm taking my fucking chances. My immunotherapy also ate away at my joints, and they are what hurt all day long, but the sharp neuropathy and the pain from the lymphedema are what keep me from having a normal life. I've gained so much weight because being still is the only thing that makes it subside totally. My doctors blame my pain on the weight. Jesus Christ, are you kidding me? It's like they just don't know what to say, so they blame the patient. They say, "oh, you're depressed" or "have you tried swimming?" Yes, I've tried swimming. This from the doctors that recommended cycling- which caused the worse pain of all. I've just accepted that Western doctors are equipped to deal with this sort of thing. They concentrate on keeping you alive and that's all they know how to do, but more and more the question of quality of life is coming up. Is it worth it if just sitting down applies enough pressure to my leg to feel like i've just been pummeled with a sledge hammer? Or that if I sit up for too long my entire abdomen swells to twice it's size? But I'm hanging in there. The pot helps a lot, even with the social stigma attached to it. And knowing that someone like you understands. you probably have no idea how much your blog keeps people like me feeling like we're not crazy, and not the only ones dealing with this stuff. I just hope you get the same from us.

Sorry I had to comment anonymously, but with my job and such, I just can't risk it. Know that I am here often to check in on you and I send peaceful vibes your way all the time.

Your homie in pain

Jackie said...

great post, kaylin, although i'm sorry to hear you're in pain over the holidays! the main source of pain i experience is in my neck following thyca surgery. at it's worst, i feel like i can't breathe or swallow because the pain is so bad; often it feels like my throat is completely blocked. in addition, vitamin deficiency following RAI, combined with my long time diagnosis of fibromyalgia, causes incredible neuropathy and joint pain. sometimes i feel like i'm having phantom pains, especially when i feel like my doctors aren't taking me seriously, but i know how i feel - and i hurt!

exercise has helped me a lot. i can't run the mileage i used to, so i've taken up swimming and spinning. in addition, i've tried hot baths, yoga, pain killers of all kinds, ice and heat packs, etc. for me, the hardest part of the pain is trying to accept it. a part of me still believes that it will go away eventually, but i don't know.

happy holidays! hope the pain subsides somewhat soon, or that you're able to refill your opiate scrips! and keep on blogging - i love reading your honesty about the young adult cancer experience.

Hannah said...

I totally agree. I've been having problems lately because all I had was either Ibuprofen or vicodin, and when I took Ibuprofen, it wasn't enough and when I took vicodin, I couldn't go to work. Mine has always been in my shoulder and I've been in physical therapy for 4 years (it didn't help when a drunkard decided punching me in my shoulder to start a fight was a good idea). My doctor had put me on an anti-depressant (trazadone) to help me sleep better because I hated how Ambien left me feeling. It's only been two weeks, but the pain has subsided. My mom is a psychologist and says it has to do with synapses in the brain and such.

kaylin marie said...

thanks everyone for sharing your stories-- chronic pain is obviously a subject that hits home for many, as well as the lack of effective treatment options.

I often keep quiet about pain because I don't want to come off as complaining, or ungrateful for my circumstance. Believe me, I'm grateful. But if chronic pain is an issue of survivorship, and more and more people are surviving cancer treatment, I think it's a subject that needs much more attention.

patty-- I hope you're feeling better! thank you for sharing with us.

anon-- I discovered medical marijuana halfway through chemo. It saved my life, allowing me to fake a healthy appetite & keep my body strong. Now, it eases my pain, nausea, and anxiety. *It's not for everyone*, but if it improves your quality of life, go for it. I find it absurd that it's still such a taboo subject!

shaan said...

well that sucks. ironically doctors don't know much about pain, and what they do know tends to be like 20 years out of date.

have you seen a pain specialist? they can work wonders. here is an auspicious-sounding clinic in sf:
http://www.sfpain.com/

also vitamin c and dl-phenylalanine can potentiate analgesics, or often act as analgesics themselves. from http://www.doctoryourself.com/pain.html:

--
At high intake levels, Vitamin C is known to reduce inflammation and act to as a natural antibiotic and antihistamine. These properties are surprising enough to many, but one of the biggest surprises ever occurred during the 1970's in Scotland at the Vale of Leven Hospital. There, Ewan Cameron, M.D. was giving ten grams (10,000 milligrams) of vitamin C intravenously each day to terminally ill cancer patients. The study was about vitamin C and cancer, but the unexpected finding was in pain relief.

In Great Britain at the time, it was policy to provide terminal patients with any and all pain relief available, including addictive narcotics such as heroin. The argument was simply that if one were dying anyway, a drug's analgesic value outweighs any drawbacks such as dependency. Dr. Cameron and Dr. Linus Pauling wrote in Cancer and Vitamin C (1981; revised 1993):



“Cameron and Baird reported (in 1973) that the first five ascorbate-treated patients who had been receiving large doses of morphine or heroin to control pain were taken off these drugs a few days after the treatment with vitamin C was begun, because the vitamin C seemed to diminish the pain to such an extent that the drug was not needed. Moreover, none of these patients asked that the morphine or heroin be given to them- they seemed not to experience any serious withdrawal signs or symptoms.” (page xii)

Any vitamin that approaches the pain relieving power of morphine or heroin must be considered some kind of analgesic indeed. The fact that 13 out of 100 terminally ill cancer patients given vitamin C were still alive and apparently free of cancer after five years is some kind of miracle.

Although quite a lot of vitamin C is needed for results, it is a remarkably safe and rather simple therapy. Additional information will be found in Dr. Cameron's "Protocol for the Use of Intravenous Vitamin C in the Treatment of Cancer," (click here to read it) and in the many vitamin C articles posted at this website (and easily found with a quick website search from the www.doctoryourself.com mainpage.)

--

jonl said...

240mg of oxycontin every day

im 30 years old

chronic pain is the devil

im an addict now

cycle of death

i love you

be strong

s said...

SPC16589285630185


that sucks. ironically doctors don't know very much about pain management, and what they do know tends to be like 20 years behind.

have you thought of seeing a pain specialist? they can work wonders. here is an auspicious sounding clinic in sf:
http://www.sfpain.com/

also, vitamin c and the amino acid dl-phenylalanine have been shown to potentiate analgesics or even act as analgesics in their own right. from www.doctoryourself.com/
 
“Cameron and Baird reported (in 1973) that the first five ascorbate-treated patients who had been receiving large doses of morphine or heroin to control pain were taken off these drugs a few days after the treatment with vitamin C was begun, because the vitamin C seemed to diminish the pain to such an extent that the drug was not needed. Moreover, none of these patients asked that the morphine or heroin be given to them- they seemed not to experience any serious withdrawal signs or symptoms.” (page xii)  
[....] 
Although quite a lot of vitamin C is needed for results, it is a remarkably safe and rather simple therapy.