Everything Changes - The Guide to Young Adult Cancer

God talk is embedded in a lot of cancer conversations: “It is all a part of God’s plan.” “The universe is trying to tell me something.”  “God doesn’t give you something you cannot handle.” (Major puke on that one.) “I’ll say a prayer for you.”  These exchanges are so common we rarely think twice about them.  Unless you are someone like me who doesn’t believe in God or the Universe.

Many people say a benefit of cancer is connecting with amazing people you might not otherwise meet.  I agree.  And part of that is meeting people with different religious faiths and beliefs, including non-belief.  In Everything Changes, I met and wrote about an Evangelical Christian, conservative Jew, Buddhist, Muslim, Catholic, atheist, and a follower of Amma.  I had with each of these young adult patients open conversations about faith and illness.  I miss these conversations.  Especially because in the greater cancer community, I often feel it is just assumed that I believe in God.

Last week, a super cute 8 year old girl was petting my dog Moses in the park.  Out of the blue she asked me if I believe in God.  When I told her I didn’t, she asked what I believe in.  I replied: “I believe in people, and that if people want to we can help each other out and make great things happen in the world.” She seemed cool with that.  We talked about her Baptist church and then she skipped away to the swings.  I adored this simple, respectful, uncomplicated conversation.

In the cancer community, my not believing in god doesn’t seem as simple.  A lot of patients and families relay on faith to get through illness.   And sometimes it feels a bit uncomfortable when I acknowledge that faith does not play any role in my healthcare.  I don’t judge anyone else who wants to use faith as a part of their healing.  It just isn’t my own cup of tea.

I was raised Jewish.  Judaism is a religion that does not proselytize, and a religion that is in the minority.  I grew up noticing differences in religions yet never assuming that anyone believed in what my family believed and I never wanted or needed them to.

What role does faith play in your health? Have you met people of different faiths in the cancer community? Do you talk openly about your beliefs?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for some cool conversations about health care and faith.

I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

I injured my knee while napping on Wednesday.  (Who gets injured napping?)  Still super painful on Thursday, Shannon pushed me into my doctor’s office in a wheelchair.  The cause of the pain is still a mystery.  We joked with my doc that it’s H1N1 in my knee, or a very new and original manifestation of PMS.  He told me to ice, rest, pop Advil and check in with him on Monday when he gets back from vacation.

My doc’s going on vacation.  Well that’s what he said at first.  Then at the end of the appointment he said, “I’ll be back on Monday, it’s a simple procedure so I should be on my feet in no time.”  What?  He slipped up but obviously wanted me to think he was off to Tahiti not the OR.

The same day, I read on the New York Times Well Blog a post called ‘When Doctors Confide in Patients.’  They told about a young woman diagnosed with MS who worried out loud to her doc about not being able to have kids or work.  The doc confessed she was living with MS too, working as a doc and had kids.  It helped the patient so much to learn about the doc’s life.

I adore my primary care doc.  He’s probably my age and so easy to talk to.  He tells me anecdotes about his life in passing but I don’t have too many details.  Our relaxed conversations help our communication, which in turn improves my care.  But  there needs to be space.  If I knew too much about his life it could get in the way of him giving me appropriate care.  For example, would I be cool with him slacking off or slipping up if I knew he was just diagnosed with cancer last week?  As a patient, I should not be put in the position to have to make that decision.  I think my doc strikes the perfect balance with me of personal and private.  With docs, I think there is a fine line of TMI.

How much do you know about your doctors’ lives?  Do you like knowing about your doctor’s life, is it weird or ever too much information?

For tips on improving communication with your doctors read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Bigger isn’t always better.  More isn’t always better.  Louder, snazzier, cuter, more prolific isn’t always better.  But I think smarter IS always better.

I was recently asked how I decide what organizations I donate to.  A few years back the head of the American Cancer Society blew me away.  He said increased access to health insurance could reduce cancer mortality rates just as much as scientific discoveries.  Who cares if we find cures that nobody can afford?  Hundreds of thousands of Americans die because they cannot afford proven cancer treatments. This doesn’t take complex microbiology to fix. All we need are better public policies.

I’m only donating to organizations providing education and action in support of the public option.  Surprisingly, no cancer organization is doing this work in a serious manner.  So I’m donating time and money to orgs supporting real healthcare reform like Campaign For Better Health Care, and Health Care for America Now.  Moral: Don’t just donate, donate smartly.

On Monday’s Stupid Cancer Show, we interviewed Diana Balma, Executive Director of Stand Up to Cancer.  These folks aren’t just dishing out cancer research grants the way most foundations do.  Rather than encouraging competition between scientists working in separate labs, who don’t share critical information, SU2C is creating and funding dream teams of scientists who collaborate.

Throwing $73 million at cancer research doesn’t impress me.  But giving $73 million to cancer research in a way that changes the model for how research is conducted - that’s very impressive.  Moral: Don’t just do research, do research smartly.

Yesterday I learned Planet Cancer (a young adult cancer organization) is merging with the Lance Armstrong Foundation.  Many organizations duplicate services, raise money but don’t prioritize their budgets, promote their name but have no useful programming, or are working in a vacuum.  Why?  People’s egos and desire to do good sometimes gets in the way of what is useful.  Not Planet Cancer.

Combining the clout and resources of the Lance Armstrong Foundation with Planet Cancer’s know-how in serving young adults is a super smart move.  Moral: Don’t just run an organization, run an organization smartly.

Who do you donate to and why? What are some of the smartest projects in the cancer community? Do you agree that smarter is better?

Read the Making A Difference section of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more smarts about making change.

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.

A great part of being an author and blogger is all of the emails I get from readers who I never would have met otherwise.  Rich Devlin is one of those people.

Rich sent me a riveting poem a few weeks ago called The Price of Survivorship, which you can read below. He recently lost his wife of 38 years to breast cancer, and lost both of his parents to cancer too.  He has two young daughters for whom he is “scared to death.”  I’m curious to hear your response to his poem.

Have you ever written poetry during your or someone else’s illness?  Do you have any favorite poetry or poets that you read to get you through the rough times?  If you have any favorite poems, written by you or another poet, please leave them in the comment section for me and others to read.  Come on Luke, I know YOU do!

The Price of Survivorship

Slides
d i s s o l v e
one
after
another
headless, legless torsos
prophylactic
r e c o n s t r u c t i o n
before & after surgery
latest techniques unveiled (proudly)
with clinical precision (emotionless)
silicon or saline (choice)
risk of rupture (real)
possible asymmetrical results (very fine print)
abdominal incision (aka. “tummy tuck”)
Tattooed areolas (optional)
Synthetic nipples (possible)
necrosis (occasionally)
mounds
of
molded
flesh
devoid of feeling.

“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer - a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

If my sexual history came with a transcript, you could read that I am anything but a prude.  So in my interview today with Newsweek, why am I so down on the ‘Save the Boobs’ ad campaign that consists exclusively of Canadian MTV host Aliya-Jasmine Sovani (a non-breast cancer patient) strutting her bouncy stuff in a string bikini with the message ‘you know you love them, now save them’?

Supporters of the ad say that being snarky, rebellious, and over the top is how we stake out the territory of the young adult cancer message. But what happens when there is actually no message?  This ad is about breasts.  Not about cancer.  So, are we reverting back to avoiding the C-word because we think it’s too grim to sell our own cause?  Is my cancer just too un-hip, un-revolutionary, un-cool for my peers?  I don’t think so.

What if we keep the gorgeous colors and sensual suspense of the ad, but saw a hottie in a bikini walking only in profile, and when she turns to face forward, we get the lopsided view of her as a breastless young woman with a mastectomy? It would be a racy, educational ad, with a message about why we need breast cancer research funding for young women.

Using sex to sell cancer instead of beer or cars isn’t a brilliant revolutionary branding tactic.  It’s an obvious, easy ad campaign that misrepresents the reality of cancer, and is a slap in the face to men by assuming the only way they can be empathetic to women in pain is by getting off on her breasts.

The ad has received 350,000 You Tube hits.  I suspect the majority of views are replays from guys pleasuring themselves in front of their laptops who still don’t remember what the ad is for; who would likely never flirt with a bald girl in a bar; and who still hope to crawl into bed with Aliya-Jasmine and have no clue that real, 160 pound, size A-cup, 25-year-olds are walking around with prosthetic “ta-tas.”

What do you think?  Do you like the ad?  Is it revolutionary to sell cancer with sex?  Do you know someone with breast cancer and do you feel proud of them when you watch this ad?

Read more about the real lives of young women with breast cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.