Monday, December 27, 2010

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?

Sunday, December 12, 2010

Big Cancer

This is why I'm generally wary of mega huge nonprofits. They tend to lose perspective.

Really Susan G Komen foundation? No need to go all diva on us.

Susan G Komen Foundation elbows out charities over use of the word "cure"

"In addition to raising millions of dollars a year for breast cancer research, fundraising giant Susan G. Komen for the Cure has a lesser-known mission that eats up donor funds: patrolling the waters for other charities and events around the country that use any variation of "for the cure" in their names.

So far, Komen has identified and filed legal trademark oppositions against more than a hundred of these Mom and Pop charities, including Kites for a Cure, Par for The Cure, Surfing for a Cure and Cupcakes for a Cure--and many of the organizations are too small and underfunded to hold their ground..."

"Cupcakes for the countermeasure" just wouldn't fit on the banner. jerks.

Friday, December 3, 2010

Happy Fun Exciting Time

I am thrilled to announce the launch of our kickstarter project: Terminally Illin'- A Cancer Comic Book.

Long-time followers will remember a post I did in 2008 upon inception of this idea, inspired by the irreverent fighting spirit of comic heroines like Tank Girl.

I want this comic to be an amalgamation of amazing, engaging artwork, hilarious storylines, and honest, informative commentary on the YA cancer experience. There will be writing from this blog, and other guest contributors. I want patients to be able to read it while going through chemo, and be transported into a fantastic world of kick-assery and (in our own sly way) hope.

I want to be able to give this work of art for FREE to any cancer patient/survivor that would like it.

Please help me spread the word! Let's make this happen!!

If you want to contribute/want one sent to you, email me: kaylinmarie[at]

Wednesday, December 1, 2010

I SWEAR I'll start making this blog less depressing.


I ran across a great in-depth study on YA oncology, found here. Of particular interest is the paragraph on psychosocial effects of cancer on those only just entering the arena of adulthood:

"Perhaps the greatest difference between patients in the adolescent/early adulthood age range and other ages is in supportive care, particularly psychosocial care. Adolescents and young adults have special needs that are unique, broader in scope, and often more intense than those at any other time in life. Cancer therapy causes practical problems in social arenas. The dependence of adolescent and young adult patients on peer-group approval poses greater challenges when confronted with a diagnosis of cancer. Self-image, a critical determinant during this phase of life, is compromised by many of the adverse effects of therapy, such as alopecia, weight gain or loss, mucositis and dermatitis (acne, mouth sores), bleeding, infection and contagiousness, susceptibility to infection and need for isolation, impaired sexuality (intimacy, impotency, tetratogenicity risk), and mutilating surgery. Other challenges include the loss of time from school, work, and community and the financial hardships that occur at an age when economic independence from family is an objective. A wide range of financial challenges occurs in the age group. In addition to the health insurance challenge described above, there are the usual limitations in affording life, much more once confounded by the costs of cancer treatment. There may be guilt if not attending to these responsibilities or stress and fatigue if trying to keep up a semblance of normal activity. Partner relationships are tested by the strain of the cancer diagnosis and its therapy. Whether a partner stays in the relationship is challenged by fear of relapse or infertility and may be influenced unduly in either direction by guilt or sympathy. Those contemplating having children may fear passing on a genetic predisposition to cancer. Medical professionals are often poorly equipped to deal with the psychosocial challenges within the age group and are often stymied by the need in these patients to increase compliance, reduce stress, and improve the quality of life during cancer therapy."

dude, seriously.