Monday, May 21, 2012

A Name For It

Don't take this post so much as a list of complaints as a list of information. Yeah, that's right, I'm not griping, I'm informing! Go with that.

I just found out that something I've been noticing isn't just some random thing but it is an actual condition with a name and everything. Right about the time my radiation treatments stopped I started noticing an electric tingling in my neck and back if I bend my neck forward. Lhermitte's sign. It's not an unpleasant feeling but it's definitely something I worried over a little bit. My Facebook friend, Jennifer Morita Kerr, had asked me if I had had any neuropathy, or nerve damage, from treatment and I hadn't thought of mentioning this, as I hadn't been aware that it was technically neuropathy.

Lhermitte's sign can be caused by radiation as well as chemo, particularly large doses of platinum-based chemo, which I had with Cisplatin. It is also caused by spinal disk herniation, which I also have (unrelated to the treatment) as well as nitrous oxide abuse, which I do not partake in, as well as a number of other conditions, including Multiple Sclerosis.

So let's expand the list of knowledge:
  • Nerve damage to:
Soft palette
Right side of neck from jawline to collarbone
Right ear
Right side of chest
Spinal column (Lhermitte's sign)
Throat muscles
Slight numbness in fingers and toes (dissipating)
  • Extremely reduced saliva production making eating a risky chore
  • Radiation damage to throat muscles causing them to misfire or not work at all, making swallowing an always-risky event
  • Pain and discomfort in shoulder as well as seriously reduced range of motion
  • Pain in neck and chest from reconstructive surgery (the whole chest muscle in my neck thing
  • Tendonitis in my neck where tendons are exposed due to the removal of tissue and muscle covering them
Minor complaints:
  • Tinnitus (constant cicadas in my ears). Cisplatin is known to cause this. It basically kills the little hairs in your ear canals.
  • Reduced hearing (probably the same
  • Permanent loss of hair at the base of my skull
  • Lack of "seal" in mouth, adding to my difficulty swallowing as well as making sneezing and blowing my nose difficult. No gargling. Too much risk of choking.
  • Almost daily muscle spasms in neck
  • Circulation issues (always cold)
  • Pain in jaw (minor TMJ)
  • I think I have 'chemo brain'. I have always been a bit of an airhead, but my usually excellent memory seems to have suffered a bit.
  • I miss my tooth and my chin whiskers
  • I also miss sandwiches. A lot.

Cancer sucks. All cancers are horrible destroyers, but of all the various forms cancer takes, Head and Neck Cancer is among the most traumatic when it comes to long term effects. I'm not trying to diminish anyone else's struggle or victories over cancer, but losing a breast or part of your lung isn't quite the same as losing your ability to eat, talk or in some cases, breathe without help. Roger Ebert lost his entire lower jaw. This means a permanent feeding tube and no speech, even with a throat mic.

*edit* and yeah, I did minimize everyone else's struggle. Losing a breast or a piece of your lung is pretty damn traumatic, to say the least.

Still, even with this laundry list of gripes, I feel very fortunate. That it was found in time. That I found a great surgeon. That my awesome oncological team did what they said they could do - cure me. That I can still eat AND TASTE real food. I don't know if I would make it very long pouring nasty gunk in a tube in my stomach for the rest of my life. I'm fortunate that I have amazing friends and family. I'm fortunate that my list of ills isn't longer and scarier. That I can function. That I'm alive to go see The Avengers with Kaia earlier tonight.


Junkstylediva said...

I understand what you are saying and going through. I have weakness and neuropathy in my legs and next to zero balance. I have started having nerve pain in my left leg at night. I need a walker to get around. I just got a blue handicapped plaque...something I have been fighting. My dr always gave me a temporary one but its over a year since my treatment and no progress. Its caused from 5fu and mycystin chemo. My pelvic bone has 5 insufficiency fractures from 30 rounds of radiation. Eventually I will need surgery to reinforce the bone or it will break. We are not complaining but stating facts...its our new normal...but we are cancer FREE!!!! We beat that SOB!

Guy said...

It's funny, it's not complaining, but it's also just wanting people to know what's happening. Some of that for me is just a little bit of needing some attention and some of it is me trying to show that it's never really over. Like you said, the New Normal.

I've had lower back issues with nerve pain in my legs that didn't let me sleep - that's no fun. Hopefully if you have to have surgery they can do it with the little robotic arms.

I guess I can edit the post, but I forgot to mention the whole 'can only sleep on my left side' thing. The shoulder and jaw/ear issues don't do well. Sometimes I'll wake up on my right side, not remembering rolling over. Not a pleasant feeling.