Everything Changes - The Guide to Young Adult Cancer

Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.

Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.

A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.

Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.

As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.

I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?

When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?

Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.

Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how other young patients manage appointments and hospital stays.

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.

When I was in isolation for radio-active iodine treatment, I was in so much pain from being off my thyroid meds for weeks that I actually wanted to die. This state of accepting and even wanting death was incredibly peaceful and blew the lid off of every idea I had ever had of death prior to that moment.

I’ve spoken with many other patients who have had deeply pivital moments during cancer care, some relating to death and some relating to other facets of life.  Here’s one such moment from Seth, a 30-something lymphoma patient in Everything Changes, who recalled being deathly ill in the hospital and how it changed his understanding of what compassion means:

“I had a constant flow of tears. That is where I connected into what God and spirituality are. It is the brokenheartedness of feeling complete desperation. My heart was cracked open, and there was this incredible tenderness inside. Everybody has this tenderness, we just don’t know how to get there. This fragile state is the closest to being at one with God or the universe. That vulnerable and raw reference point is the greatest teacher. That is where the Dalai Lama, Mother Teresa, and the really compassionate people of the world are coming from. They have a constant access to this deep understanding of what it is to be human and what it is to experience pain.

“To me, this is the most real place, but it’s raw and uncomfortable, so why would you want to go there? We do everything we can in our power to run from that painful, ugly place. It is not necessarily what we would think of as positive. But it is real. We rush around our lives wanting happiness, but it evades us because we are not willing to touch what is real. We think, Oh, it is money or success or things being a certain way that will bring us happiness or satisfaction. But I think it actually comes from that brokenheartedness, which is our true humanity. It is the place where we are our weakest and our strongest. From that place, you can relate to anyone. If you find the ability to hold these paradoxes, you actually have more of a capacity to live fully and to cope with the fact that life is full of paradoxes like this.”

Have you had moments as a result of illness that you describe as epiphanies or profound realizations that you have carried out into your life beyond illness? Do you share this experience with other people or keep it private?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more of these big moments of private, profound thinking.

Kim, a thyroid cancer patient, responded to my last week’s post about tips for handling family during illness:

“I think I might be the only person in the world who hasn’t told her own parents about her cancer diagnosis.  :P  From growing up, I know that my parents, esp my mom, would totally freak out if she ever found out about my thyroid cancer.  She would try to control every last food item that I put in my mouth and would probably try to come live with me (uninvited).  With my work and life, I couldn’t deal with any of that drama during and around my surgery, which was over 3 months ago.  Now, though, I wonder how long I can keep this secret from them.  Any thoughts or advice on breaking this type of news ‘after-the-fact’ would be appreciated!  Or, validation that it’s OK never to tell your own parents?!”

I know from writing my book, Everything Changes, that Kim  is not alone.  I’ve met and written about other people who chose to not tell their parents about cancer and other serious medical conditions, or who denied their parents’ help and presence during treatment.  There are rare circumstances where it may be a smart choice to wait to tell your parents.  If your parent is irrational, you have an extremely stressful relationship, or they have a mental illness that prevents them from being helpful, empathetic, or supportive, going through cancer care without your parents and with an organized set of stable, supportive friends might be the best choice for you.

Kim, I don’t know that there is a right way to tell your parents, but here are a few things that come to mind that could be helpful:  Do it in person if possible;  Don’t do it in public; Ask a stable family member (a cousin or aunt) to be present with you (or if you have to do it over the phone ask them to call your parents after you’ve spoken with them); Bring or send simple, written information to back up good, rehearsed definitions about your disease, your treatment path, and how it impacts your daily life;  Think about how to answer when they ask “Why didn’t you tell me?”  If it’s a good time to dive into the root of your relationship problems, then prepare for how to have that conversation.  Otherwise, prepare strong statements about how and why not telling was the most supportive thing for you.  And acknowledge that you understand why they might feel hurt by your choices; Alert your friends about the conversation so they are there afterwords to give you the love and support you deserve.

I’m curious what words of advice or support other people have for Kim.  Have any of you hidden your cancer from your parents or waited a long time to tell them?

Read more about how other young adult cancer patients handled relationships with their parents in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.