Everything Changes - The Guide to Young Adult Cancer

By Jackie B-F

“What’s that scar on your neck?” I wasn’t even 20-minutes into the first day of orientation for my Master’s program and my scar had already been noticed. I have been debating the whole summer about how to disclose my cancer at my new school. I am proud of my diagnosis and I am happy to talk about my experiences with cancer, but I didn’t want cancer to be my first introduction to students and faculty. I’ve thought about some ways I can disclose my cancer at school:

I can choose to only tell some of truth. When asked about my scar at orientation, I was caught off guard and told the student about my cancer diagnosis. However, there are other ways to disclose my medical conditions that don’t involve the “C-word.” I could have said, “I had surgery” and left the conversation at that.

A wardrobe change might also be in order. I’ve accumulated a lot of cancer shirts and bracelets since being diagnosed, and I wear them proudly! However, I’ve chosen to set them aside for at least the first few weeks of school. That way I can disclose my diagnosis in a more organic way and not because my shirt says so.

I may not want to disclose to everyone at school, but letting my professors know can be very helpful. If I end up missing a lot of class, they deserve to know why, and some professors may be willing to help me catch up during their office hours. Professors are often supportive and can be a good advocate. I’ll probably let my professors know within the first few weeks of classes.

Ultimately, I have to do what feels right for me, and remember that I was accepted into school for my smarts – not my cancer.

We are asked to disclose our cancer in a variety of settings. How do you choose who to tell and who not to tell? Have you ever had to make up excuses on the spot to cover up your cancer?

To learn more about disclosure at school, your legal rights, and how the office of student disabilities can help you, read the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Sarah J.

I keep finding myself thinking: If my doctor gives me a few months to live, would I want to live them the way I have been? The answer of course is no. I’m sure I’m not the first cancer patient who thought about quitting their job, moving to a tropical island, and having a torrid affair with a cabana boy (or girl) after writing a memoir.

Yet here I am today, back to the same old grind as before cancer with only a few changes. Why? Reality. Medical and credit card bills prevent any job quitting or island hopping. Since cancer entered my life, and especially during my transition from cancer patient back to an average Jolene, I have struggled to find balance between the reality of my life and that feeling that I should be out living it my way. I call this “Life’s Too Short Syndrome”.  Although I haven’t found a cure for this syndrome, I’ve discovered a few ways to make the reality of life easier to live with.

1. I created a bucket list. Seeing what I really wanted to do took away from that overwhelming feeling of there being so much I hadn’t done. In May I crossed taking a motorcycle class off the list, and I’m always checking craigslist for a cheap piano.

2. I set manageable goals for myself. I can’t quit my job, but I went back to school so that I’ll be able to get a job doing something I enjoy. I can’t afford a trip to Alaska or a tattoo sleeve, but I’ve opened a secret savings account just for me.

3. I try to tell the people in my life how I feel about them. (As much as I can without being creepy.)  I feel better knowing that I told them how I feel when we part ways…just in case.

4. I let more things go than I used to. Work drama and office politics used to drive me crazy, but now I try to ask myself if the situation falls into the ‘my problem’ pile or the ‘not my problem’ pile. When the kids are making a mess, I try to see the beauty in their play instead of thinking about what the house looks like.

Still, there are times I find myself going back to that original question. Maybe there isn’t an answer. Maybe I’m just supposed to do the best I can no matter how short life is.

How do you find a balance between the feeling that life is too short and reality? Do you think younger cancer patients experience this conundrum differently than older patients?

Read more about coping with the pressures of ‘Life Is Too Short’ in the book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

The thought of carrying a child for nine months and having them pass through my crotch is about as appealing to me as having a recurrence of my cancer.  I’ve flat out never wanted to become pregnant or be a mom.

When I met my husband, I told him on date number two that I had cancer.  On date number three I told him I didn’t want to have kids.  I added the caveat that if I ever changed my mind, I’d want to adopt.  Agreed.   That was six years ago and we are still happily “childless by choice.”

But what choices would I have available to me if I do someday change my mind and as a cancer patient want to adopt or even foster a child?  Cancer conferences, organizations, or projects dealing with family planning dominate the issue with an often exclusive focus on fertility. Adoption is the bastard child of the cancer world. It drives me up the wall, and this is why Gina M. Shaw’s new book is a welcome addition to my cancer book library.

Gina is the author of the new book Having Children After Cancer (Ten-Speed Press). ‘Be My Baby’ is a forty-seven page chapter on cancer and adoption – one of the most in-depth sources I’ve read on the subject.  Like the rest of her book, it is laden with straight-up, indispensable information for both men and women facing cancer and planning a family.  A medical writer, breast cancer survivor, and mother of three kids (both adopted and biological), Gina’s book is not a cutesy bun-in-the-oven romp through baby land.  A writer after my own heart, Gina gives readers a serious education on the legal, financial, medical, and administrative side of family planning.    Having Children After Cancer enables survivors to read about adoption as a valid family planning choice along side fertility preservation, IVF, and surrogacy.    Whether you are recently diagnosed, a childhood cancer survivor, or just out of treatment, Having Children After Cancer is the family planning go-to book.

Have you thought about cancer and family planning?  What is the most challenging part about it?  If you’ve had a kid since your cancer diagnosis, share your story in the comment section so others can learn from your experience.

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.