Everything Changes - The Guide to Young Adult Cancer

I’ve long been afraid of medication, even over-the-counter meds.  Since way before my cancer diagnosis, I was scared of what the side effects could do.  I opted for just feeling my pain or taking natural remedies instead.  But having cancer changed some of that for me.

I used to not even take Tylenol for a headache.  Now I toss back two extra-strength at the first twinge of pain.  I want to nip pain in the bud because A) Feeling pain sometimes launches me into a cancer PTSD anxiety spiral and B) Since cancer I feel like I have filled my life time quota of pain.  Why have any more than I need?

Without going into huge detail about my bowels, I’ll just say that my doctor wants me to start taking a medication that contains aspertame and might make me feel bloated and crap a lot.  (Or it might not.)  The sample is sitting on my kitchen counter.  I don’t want to take it.  And then I laugh at myself.  Aspertame is ridiculously benign compaired to the hundreds of milicuries of radioactive iodine I’ve consumed.  Can I have made it through cancer treatment and still act like such a wimp about over-the-counter, pink lemonade flavored medication?  Indeed, I can.

Has going through a serious medical illness changed your relationship to having to take medication?  Are you more or less likely to take over the counter pills now?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how young adults can manage pain.

I love weddings (almost obsessively so) and am thrilled for anyone who is currently engaged.  But, sometimes it is damn hard dealing with wedding planning season when you’ve got cancer or a chronic illness.

Being single with cancer and no date at my brother’s wedding was hard.  I was in the midst of breaking up with a guy who couldn’t say the word “cancer”.  I was so happy for my brother and didn’t want to feel like a self-pitying sister or that I was detracting from his moment.  I tried to keep my mouth shut about it all.  I also dreaded all of the guests telling me how grrrreat I looked in that wacko-cancer-pity-adoration way.  But for all of my angst leading up to it, I decided to go totally solo, not even bring a friend date and it was the most fun wedding I’ve been to.

When it rolled around to my own wedding a few years later, I thought hard about whether at I would thank the people in my life who have been there for me during “hard times” (code words for “cancer”.)  I decided to thank people for other things, that cancer didn’t belong at my wedding.  But sometimes it isn’t possible to compartmentalize life like that; life just bleeds on through.   It’s challenging to hide baldness at a wedding or scars decorating your body.  And you can’t hide your absence at a wedding because you were too sick to go.

It’s hard to transition from staring death in the face to embracing unlimited love. Take for example Dana, a leukemia patient in my book Everything Changes, who said: “At my rehearsal dinner, I went into a bathroom stall and sobbed my eyes out. I could not believe I was at my own rehearsal dinner after everything that I went through. My friend came into the stall and sat with me. I just needed her to be there while I got it all out. It was like I suppressed all of these feelings because they were too big for my brain. It was like, ‘Look at where I’m at, I’m alive, I’ve met this man.’ I had to let them out.”

Wedding budgets, gifts, puking on your bouquet.  As a bride, groom, member of the wedding, or just a guest, what are some of the challenges that you’ve faced because of your  illness?  Do you have any weddings coming up this year?

Read about being engaged with cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.