Everything Changes - The Guide to Young Adult Cancer

When  I was 27 years old, I sat on a pleather exam table and had a doctor two years older than me tell me I had cancer.  Everything in my life changed.  But, this is actually not why I called my book Everything Changes.

During cancer treatment, many patients rack up hours sitting on their toilets.  I kept a big stack of reading material next to mine.  I would open to random pages in the Tao de Ching, a Chinese philosophy book written in the 6th century BC.  One day in the midst of wishing my life were different, that my body aches would subside, that I would not be single on a Saturday night sitting on the toilet with cancer – I opened to a random page in the Tao de Ching and pointed to the words ‘Everything Changes’.  And it is true.  I’m now married. I still have cancer but I rarely have body aches.  And I spend much less time in the bathroom.

The mantra ‘Everything Changes’ gets me through the hardest moments of living with cancer.  No matter what any of us are experiencing right now, a basic truth is that everything changes.  It is great to know that I won’t stay stuck anywhere forever.

I’m not naive.  I know change could lead me down hill instead of up.  But that’s just reality.  I don’t need magical thinking to get me through tough times.  I just need a bit of truth that keeps me moving forward.  Everything changes.    That’s real.  That’s something I can count on.  And in desperate times, having something to count on is my definition of hope.

I loved talking to Tracy, a breast cancer patient in Alabama who I interviewed for my book.  Before each treatment, she sat in the parking lot and read Psalm 23.  Do you have a favorite quote, phrase, scripture, or mantra that gets you through hard cancer times?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy and how she coped with treatment related fear and depression.

Today’s post is longer than usual. I get great emails from people who have read my book Everything Changes. I thought I’d share this one with you and my response:

Dear Kairol,
You’re the only other person I’ve found with a tricky case of thyroid cancer with no cure. How did you deal with it? Having my cancer labeled as “recurrence” worked because then we could do something about it. But now it is seen more as incurable.  The constant monitoring and the knowledge that it’s lingering sucks. Lately I’m always thinking about it. Did you just accept it at some point? How long did it take? Blogging helps a bit to get the thoughts out of my head, but it’s sort of driving me nuts. Any suggestions, advice? - Robin

Dear Robin,
You’re in territory familiar to anyone living with chronic disease. It is very unusual for papillary thyroid cancer to be incurable, but here you and I are. I’m living with two tumors in my neck and am not receiving treatment (I’m refractory) and won’t have surgery unless they grow significantly. I’m doing this under close supervision of a top-notch doc at Memorial Sloan Kettering. This approach is a recent shift for me. Your question made me reflect on how I’m coping with incurability.  Hold tight, some of this seems nauseatingly Oprah-esque but just stick with me:

Acceptance and relief. My experience is opposite yours. Knowing that my cancer is incurable has dissipated my fear and anxiety somewhat, which is hilarious considering what a high-strung freak I can be. When we still thought there was a cure, I was hyper-stressed wondering “Will treatment work this time?” “Will my scans show me as cancer free?” It seems twisted, but in this world of being incurable, I find relief in not having to grapple with these unknowns and in not having to recover from the continual and exhausting disappointment of bad news. Of course I’d rather have good news, but I’ve rarely received good news in nine years of cancer and I’m sighing with relief at calling a spade a spade.

I now mark success not by the absence of cancer but by whether the tumors have grown or stayed the same (I want to include shrinking as an option but I feel too jinxed to do that.) This is a big change that I’m still adjusting to.  And yes, waiting for blood test and scan results still SUCKS but is getting ever so slightly easier with time.  Either that or my distractions are just getting better.

Expert Care. My new doc primarily sees patients with challenging cases. He has no pity, confusion, or odd curiosity about my case. He has seen tons of patients in my shoes and can tell me what to expect. This is tremendously reassuring.

Deep Distraction. I’m good at feeling my feelings, and at finding supreme distractions: a person can only take so much wondering if cancer has spread to other organs. My book Everything Changes hit the shelves while the reality of my chronic condition was unfolding. Keynote speaking, blogging, answering fan mail, and having book parties around the country are incredible distractions. (Anyone who wants to host a book party for me – just say the word!)  There is a fine balance between running from reality and plunging into a well deserved, therapeutic lifestyle of perfectly legal distractions.  Find that balance.

Simple Comparisons. 98% of the time comparing oneself to other cancer patients is a supremely bad idea and only leads to jealousy, guilt, or worse - forced gratitude. I have found a small exception. I live daily with the intimate stories of 25 people who are in my book.  Their cancers are faster growing than mine (most papillary is very slow growing) and my survival rate is still very good.  I may or may not have to deal with some more complicated medical hell in the future.  And that scares the crap out of me.  But I know I still have a good chance of living, and compared to these other patients I have come to adore, I’m down right grateful.   I do not make these comparisons to force myself to feel better – again, horrible idea – but the comparisons are just happening naturally for me and result in some deep appreciation for my struggle and theirs’.

Being Myself. Who I am changes because I’m growing up, adjusting to cancer, and seeing the world differently as life moves on. How I feel now about my cancer today will not last forever. What’s easy for me to digest now may become harder, and then will become easier again. That’s why I love the mantra Everything Changes. It is just true.  When I’m in an hideous headspace about my cancer, I don’t beat myself up about feeling like crap. I let it be and know that it will change. Relieving this pressure helps. Seeing a therapist can be helpful too, as can my current system of therapy: baking strawberry cobblers, talking out my fears with Shannon, renting espionage movies, and remembering that Everything Changes.

Does anyone else have advice for how to live with recurrences, incurable disease, or what to do with cancer fear in general? Have you made the shift from acute to chronic and how did you deal with it? If you have other questions for me, send them my way. I’d love to answer them.

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn  how Wafa’a, Geoff, Greg, and Holly Anna have dealt with illness over the long haul.

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?