Everything Changes - The Guide to Young Adult Cancer

I’m no angel.  In high school I smoked a lot of pot and hash.  A straight-A student, who rarely smoked on school days, I felt completely justified getting bake on the weekends. I wasn’t looking for a mellow buzz; I loved getting completely messed up.  I had a blast being stoned with my best friend, laughing uncontrollably, and satiating the munchies with hot fudge sundaes and donuts at 4AM.

I partied hard in high school and got it out of my system. I haven’t touched drugs since I was 21. I never felt addicted nor did I have a master plan about being a drug-free person. Feeling totally out of control had been fun, but, gradually, the experience of seeing rooms spin like a carousel and hearing people talk in slow motion felt out of control in a bad way.  So I stopped.

I hate feeling drugged even more so now because it amplifies how out of control I feel living with cancer in my body.  I chose not to take painkillers after my surgeries, swallowing my pain instead.  It took months of convincing by doctors until I finally popped my first xanax. I fear that most medication will make me feel foggy and out of control.  Surprisingly, xanax just relaxed me with no fog, no out of control feelings - a welcome experience in  the midst of scans and cancer care.

In the ‘Coping With Pain’ section of Everything Changes, I interviewed Dr. Diane Meier, one of top palliative care experts in the country.  She talked to me about the most common myths of pain meds.  I learned that when pain medications are properly prescribed and managed they can really help relieve suffering.

I’d love an honest conversation about our fears around using pot and narcotics for pain relief, and to hear some positive experiences of how they have been helpful. (I’m not so interested in a conversation about legalizing medical marijuana - I think far too many stoners are using our cancer as their platform for legalizing pot.)

Do you have a fear of prescription narcotics or marijuana?  Do you have success stories about working with doctors, nurses, palliative care specialists to relieve your pain through narcotics?   Have you used marijuana to ease treatment side effects or pain? What was it like? (Feel free to reply anonymously if you’d prefer.)

Read about how Geoff, a 22 year old druggie, got clean during chemo in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I just got back from a ten-day heavenly trip to Georgia with Shannon: lush palms, Spanish moss, butterflies, lazy boating on a lotus lined river, and my mystery fever (just for a day).

I get mystery fevers every few weeks and have for a long time.  I down Tylenol, drink tons of water, lay low that day and don’t push it the next day.  If I get a little cancer PTSD, I take xanax and snuggle with Shannon.

On vacation, the day after my mystery fever, we visited the gorgeous Savannah-Ogeechee Canal with a 1-mile roundtrip walk. The heat index was 100 (which I actually love - call me crazy), the terrain flat and stunning.  I heard a voice in my head saying with confidence: “Don’t do the walk.  I know my limits…. Blog about this when I get home.”

Knowing my limits is instinctual now, but it wasn’t at the beginning of my cancer ride.  I used to push myself hard, like a poster-child cancer patient who was getting the most out of life. I was like Wafa’a, a lymphoma patient in Chapter 3 of Everything Changes, who was addicted to clubbing.  I didn’t want to feel left out, be home alone, or let cancer get the best of me.

But over time I’ve changed my definition of what the best of me is.  The best of me is not Kairol conquering a hiking trail in the beauty of nature, nor is it me feeling sexy in a great summer outfit, nor dancing my heart out in ballet class.  The best of me is when I can look long and hard in the mirror and just be satisfied with who I am no matter what I am doing or how I am feeling. There are no limits to this “best of me.”  I know, I’ve done this look’n-in-the-mirror as a pasty white ghost in a hospital gown about to swallow 150 millicuries of radiation.  If I can be the best of me in that situation, then I suspect it is fool-proof.

Recognizing the parts of me that are limitless makes it so much easier to accept my limits.  No big hike?  No biggie. I sat on a rocking chair at the ranger station and looked at the sky.   It was pretty lovely.  Ultimately I don’t know if it’s cancer that taught me to know my limits, or if it’s just part of being a young adult who is maturing and happens to have a few tumors in my neck.

Do you have a hard time knowing what your limits are?  Do you push them, respect them, hate them?  Has this changed for you over the course of your illness?

Read more about Wafa’a the cancer clubbing queen in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.