Everything Changes - The Guide to Young Adult Cancer

“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.

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Rick Gribenas is an artist and lymphoma patient quoted throughout my book Everything Changes. I’ve become friends with his wife Charissa since Rick’s death this past spring.  In addition to starting an organization, BRICKS, she’s been writing about her real time experience as a young adult widow.  Her first guest post was “How To Be A Widow on Myspace”, here’s more from Charissa:

“‘There are no rules for this,’ a very wise friend told me. And by ‘this’ she meant my mourning. She’s not a widow herself, but a level headed, tough-as-nails lady who knows a little bit about a thing or two. She’s the one who hopped in her car minutes after my frantic text message alerting her to the passing of my husband, and drove from Philadelphia to Pittsburgh so I wouldn’t have to spend those first few days alone. Of all the things people said to me over those awful, confusing days, this is the thing I have kept with me.

“I worried about my decisions, about facing each new challenge and how
I would deal with my own, chaotic emotions. There are no rules for this. No matter what, every decision I made was the right one, it had to be. I would know it was the right one. Whatever I felt in my gut was the thing to do, was. This was no time for second guessing myself, or doubting the validity of my feelings.

“Anticipating events and how I would handle them worried me over the following months. March turned into April, and suddenly my husband’s birthday was in front of me. I invited friends, I bought a case of his favorite beer and a cake he certainly would have approved of. We ate and drank and laughed and cried and it was everything it needed to be. The days got warmer and July was here, and I anxiously counted down the days to our 2nd wedding anniversary. I spent that night alone, in the foreign quiet of our house, feeling strangely at ease about the
whole thing. I realized that we celebrated every day, grateful for what we had found in each other, and the marker of the day we announced it to the world didn’t feel as heavy as I had anticipated.

“Some days surprise me with nearly unbearable misery, and others that I expect to be unbearable bring a peaceful calm. Either way, I fall asleep (eventually) and wake up to a new day. I get through it, and keep going. I take it one day at a time, and do whatever feels right for getting through it. After all, there are no rules for this.”

I’m curious to know how the rest of you cope when life is  hard and there are no rules. Is it comforting and easier knowing that it is up to you to forge your own path, or is it more challening to have no guide or reference point?

When I interviewed Rick Gribenas for my book Everything Changes, his honesty blew me away.  That same kind of honesty lives on in Charissa, his wife who is now widowed.  She is the founder of BRICKS for Young Adults. Yep, that’s her pic above.  I hope this is the first of many guest posts from her:

“I learned very recently that the term ‘widow’ is not an option on Myspace when selecting a ‘Status’. This really bothers me. I feel that the other options don’t apply to me. So, I need to reclaim the words ‘widow/widower’.

I think people are afraid of it/us. Sure, our new status is difficult and comes with a lot of work to do. That doesn’t mean we are some strange, mysterious creature not to be trusted or gotten close to. The word widow means I was a part of a loving, special relationship that ended not by choice but by circumstance.

To my friends I say, ‘Believe me.’ When I tell you I’m ok, I’m really not lying or covering up my feelings to spare you the details. Every day is new as I work through this. I have good days and bad days. Some days all I do is smile when I think of my husband, other days I can only cry. It simply means that I am ok. Not awesome, not wonderful, not wallowing in misery. When those times come I hope you’ll be there too, but when I’m ok trust me and let me be ok for as long as it lasts.

To the cancer community I say, Don’t ignore me.’ Bereaved spouses have so few resources. Sure, my partner’s story may not be an American Cancer Society commercial waiting to happen, but it’s mine, and it connects me to the larger community of those dealing with cancer in so many capacities. I’m not going to rain on your parade of positivity, nor is my “widowdom” any more contagious than the cancer that put me here. I shouldn’t get kicked out of the club because my story didn’t have the happiest ending. It’s still a story of hope, love, trust and living.

Being a widow is now a part of my story, a learning experience that makes me who I am. I learned this acceptance from my husband- that every experience has value, and it only has the power over you that you give it. It has happened, you have no choice but to accept it, so now what do you do with it?  You all already know my answer to that.”

If you’re a bereaved young adult, how do people around you respond?  If you are a survivor do you ever reach out to widows/widowers or does it freak you out – especially if you are still in treatment?  (Come on, be honest.) I think our community often sweeps bereavement under the young adult cancer rug.  This needs to change. Do you agree?

A few years ago I met a Hodgkin’s patient in his art studio in a semi-vacant floor of a university lecture hall. He made sculptures: incredible little models of buildings and sleek sound and light pieces. Rick Gribenas’ mind was intricate too - he excelled at looking at cancer from unusual perspectives that went against the grain in thoughtful and subtle ways. His quotes about survival, statistics, and the labor of cancer are studded throughout my book. Also check out his eloquent words about cancer and the war analogy.

On the Pittsburgh leg of my book tour, I will be attending and speaking at an event in honor of Rick Gribenas . To my recent shock, I learned that Rick died less than a month ago. This benefit originally intended to support his medical bills will now be a celebration of his life and donations will go directly to his wife Charissa to help with medical and funeral costs.

It is easy for us in the cancer community to celebrate life, but how do we celebrate someone after they have died? I think we shy away from this a bit, as it is hard to be reminded of our own mortality when we are in the think of cancer ourselves. I believe we need to challenge ourselves to think beyond our own circumstances and to support the families of young cancer patients who are coping with loss. I hope you’ll join me in doing this and have a hell of a lot of fun while we are at it!

Saturday, April 11

6 pm going late
Modern Formations Gallery
4919 Penn Ave., Garfield
Music ranging from acoustic indie-pop to melodic punk
Donation $5 to $15 to benefit his family

Have you been close to a young adult cancer patient who has died? What was it like for you? How did their other friends, family, and colleagues respond to their death? If you live near Pittsburgh, can I count on seeing you on Saturday night?

The last time I confessed my morbid little day dreams it was a real hit both here and at Planet Cancer, so here I go again:

Confessions

Wondering what to do once you’ve croaked with your iPod, journals, and the IRA account you opened two years ago? If so, you are not alone. I’ve met tons of young adult cancer patients who write and rewrite their wills in their minds - even if death is not imminent. You hear the word cancer and it’s just natural to wax morbid. Sometimes it even feels comforting.

Well, I’ve got a new one. My Uncle Bill died this weekend. He was a fantastic human being, a doctor who taught to med students classes in doctor patient communication, and a prominent clinician whose research on Downs Syndrome changed the lives of thousands of children. (He was buried with a Grover puppet – how great is that!) I was reading his obituary and noticed three Downs Syndrome organizations that people could donate in his honor.

It got me thinking, if I got hit by a bus tomorrow, or if this cancer deal took a turn for the worse, would people know where to donate in my honor? What if they chose some ridiculous cancer organization that was all about pharma and pink ribbons and gave no money to young adults with cancer? That would suck.

Earmark

So I’m going to send this post to my family to make it known that should I step off a curb tomorrow when the #147 is flying along Sheridan Road, this is where I’d like people to donate in my honor: Planet Cancer, and earmark the funds especially for their Advocacy Roadshow program that will educate physicians about detecting and diagnosing young adult cancer patients at earlier, more treatable stages. How many of us struggled to get diagnosed because we were told by doctors we were too young, we must have pulled a muscle in yoga, or were hypochondriacs? Never again. Maybe I shouldn’t wait for death – perhaps I should forgo Chanukah presents and have my mom and dad send the money to Planet Cancer instead.

Do you let your mind wander to thoughts about your death, your funeral, or wills? What do you do with the morbid little nasty thoughts that pop into your mind? What organizations would you choose to have people donate to in your honor?