Everything Changes - The Guide to Young Adult Cancer

I lived a deprived childhood.  I never was part of a science fair.  Seems like everyone else I know had science fairs… maybe my school was just too cheap.

I got a chance to make up for it last night as an author at a Chicago literary fair.  The challenge was to make science fair-like projects out of our book.  (Sweet PR change of pace from my usual writing articles and planning speeches.)

I took quotes from my book Everything Changes, and wrote them on little paper doors that you could life up and read about the cancer patient who said them.   For example:

“I’d ask my doctor a question, and he’d say, ‘We’ll cross that bridge when we come to it,’ and I’m like, ‘No, f*** you. This is my body, I’ll cross it right now.’”

Amilca Mouton Fuentes, 26, leukemia.  Lives in her parent’s house with her husband, 15 month old son, and her siblibings.  Seven adults and one bathroom.
Loves Krispy Kremes, and is devoted follower of Ama, an Indian spiritual leader.

“I believe that there are times when it is appropriate to receive help, just as there are times when it is appropriate to give help. If you ever refuse to receive, you are unnecessarily putting a barrier between yourself and the love of others. It’s normal for humans to live in communities where there is love and relationship, and receiving is just as important a part of being in that community as giving is.”

Richard Acker, 36, colon cancer.  Dad, husband, environmental lawyer.  Evangelical Christian dedicated to preserving God’s creations.

I had eight quotes in total that helped break stereotypes of cancer patients, and taught a bit about some of our attitudes and lives.  But I still feel like I ultimately failed in that I couldn’t come up with a connection between young adult cancer and an exploding baking soda and vinegar volcano.

If you had unlimited time and money to create an outlandish, over the top, large scale science fair project about your life as a young adult patient, and it were going to be show at a place like…let’s say ASCO, what would you make?

Read more about Amilca and Richard in Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

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.

Psychosomatic.  There I said the word.  Did you cringe?  I would think most young adult cancer survivors might.  Many of us had delayed diagnoses because our doctors thought we were hypochondriacs, too young for cancer, and it was all in our heads.

Take for example Mary Ann Harvard, who is the fantastic It Girl in my book.  Her docs told her that her fatigue and difficulties breathing were all in her head.  They even gave her a referral to a psychiatrist.  I bet they felt like big assholes when it was finally discovered that she had a tumor in her chest the size of a football.

But, over the past few years I have begun to explore the notion that some of  my fatigue and aches and pains are sometimes caused by stress and worry.  This seems like a Pandora’s box to open as an advocate who fights hard for our medical needs to be taken seriously, but here I go.

I don’t think that my fatigue and pains are always in my head.  But I do think that stress hormones can do a number on my body.  I have begun to notice my stress level and a correlation between how I feel physically.  At first I wanted to deny the connection because I felt it discounted my experience as a cancer survivor.  But it actually helps to notice when my stress is impacting my health and modify my behavior.  I don’t chalk up all of my pains and fatigue to stress, but I am training myself to recognize the difference between stress and a separate physiological illness response.

Does the word hypochondria make you cringe?  Were you ever accused of being a hypochondriac prior to your diagnosis when your symptoms were arising?  Do you ever notice a link between how your feel mentally and how you feel physically?  What do you do about it?

I read a fantastic article in the New York Times, by Lesley Alderman, about how to save money on prescription drugs. I’ve slash out the doughnut hole lingo and other senior factors and created a summary version that relates more to 20 and 30-somethings.

As part of the research for my book, I’ve done a ton of research on resources for discount drugs, and other forms of financial assistance for young adult cancer patients. On the right column of my blog page, click ‘Download Chapter One’, underneath the cover of my book. The resources section at the end of this free PDF is loaded with my finds.

Snail Mail Drugs
If you have health insurance, call the 800 # on your card or search on line to see if your company offers a drug mail order system. Many do. This service tends to be used for prescriptions you take on an on-going basis. For example I pop a levoxyl every single day, and will for the rest of my life. I could get these sent in the mail from my insurer at a huge discount. This service, however, would not be used from a temporary drug, such as an antibiotic for an infection. The paperwork to sign up for this service is relatively simple, so what the hell am I waiting for? Bulk levoxyl here I come.

Brainstorm With Your Doc
To your next appointment, bring a list of your Rx’s or the actual bottles. If you have health insurance also bring a copy of the list of drugs your insurer covers – this is called a formulary. You can get it by calling your insurance company or visiting their website. Then ask your doc the following questions:

• Is there any duplication of medications – are they all necessary?

• Have they all been effective and do you need to remain on all of them?

• Are you still on the correct dosage?

• Is there a generic version that could be used instead? (Be sure to ask about generics anytime you are given a prescription.)

Comparison Shop
If you are paying out of pocket, check out Destination RX to shop around for the best prices on prescription drugs. Times reporter Lesley Alderman also suggests trying the local or mom and pop drugstores in your area too. Sometimes they have surprisingly lower prices.

No Insurance or Low on Cash
If you don’t have insurance visit the Partnership for Prescription Assistance, that has a database and online application for free prescription programs for low-income, uninsured, and underinsured patients. Yes, the organization irritates the hell out of me because it is a non-profit group run by pharma to help those of us who cannot afford their drugs, and they are likely just getting a tax deduction from it all plus good PR, but I guess we take what we can get, right?

Are there other ways that you have tried to cut your Rx costs?  What was the most you have ever paid for a prescription?  (I once got a shot that cost $2,000.)  Do you ever get Rx by mail?  If so, has it saved you money?