Everything Changes - The Guide to Young Adult Cancer

Shortly after my diagnosis, I applied for and received scholarship funds to pay for alternative medicine treatments. Living in the Bay Area, my choices were endless: Chinese Medicine, nutritional therapy, energy healing. Practitioners wanted to shove coffee up my ass, have me go on juice fasts, float in healing water pools, select animal totems, and gulp down putrid herbs. They used dirty words like sleep and meditation too.

Alternative medicine is just one more area of cancer care that I’ve had to get savvy about navigating.  It is just as much of an industry as standard cancer care with its own pit falls, winners, and losers.

Walking into an alternative medicine practitioner’s office is a wild card compared to the narrow experience of visiting a traditional doctor’s office. The alternative medicine industry has few standards or regulations (though they could well afford to). Many practitioners are zealous about healing in ways that are not always realistic or are an overreaction to allopathic cancer care. And because many alternative methods depart from science to some degree, they often involve varied emotional, spiritual, and religious components that can be jarring to survivors whose internal worlds might already be in an precarious spin.

I was an avid and educated alternative medicine consumer long before I was diagnosed with cancer, and continue to use it as part of my care. But I don’t talk or write about my personal alternative medicine experiences. I’m not interested in becoming a walking billboard for a lifestyle that I can’t scientifically prove has had an impact on my health, nor do I know if it would be beneficial to the particular disease path of any other patient.

Still, I’m a huge proponent of getting smart about alternative care and wrote in  Everything Changes extensive guidelines for defining your alternative medicine goals, questions to ask a practitioner, and other checklist for evaluating alternative medicine experiences.

My number one tip is that although many forms of alternative medicine use concepts that we cannot rationally understand, you should always still use intelligent, rational thought processes in deciding whether the methodology is right for you and if the practitioner is a trustworthy, educated, experienced, and intelligent person.

Have you used alternative medicine? How did you go about finding a practitioner? What qualities did you look for? Any good stories to share about the winners as well as the wackos?

Check out Everything Changes for a mini-guide on navigating the world of alternative medicine.

One of many things that would kill me faster than my slow growing cancer is adopting the mindset of positive thinking. It is so against my nature. I’m sure this makes me sound like a curmudgeon. But why? The opposite of positive thinking isn’t negative thinking; it’s realistic thinking.

I woke up the day after my diagnosis and began thinking hard about these realities: My cancer could spread. I could live, I could die. My doctors might make mistakes. My activities might be limited. My finances might be impacted. And of course, there was the realistic hell of finding out that I had no insurance.

I didn’t spend much time wishing away these circumstances.  Instead, fully absorbing the reality of these putrid situations helped me stratagize and meet my needs.  It encouraged me to research like mad, and turn this bundle of research into resources for other cancer patients to use.  Spending sometime staring at these scary realities has helped me feel my feelings instead of bottling them up. It has allowed me to live fully with ‘what is’, which has made a lot of room for both sadness and joy.

I deeply want positive outcomes in my life, but I don’t believe that thinking positively about them will make them manifest.  Instead I believe that positive health outcomes occur by using smart science, making the best rational decisions possible, encouraging good public health policy, having enough money, support, or resources, and being on the right side of medical mysteries for which there are explanations that we have yet to discover.

Do I have times when I think positive thoughts? Yes. There are many instances where I am encouraged by the world around me and by the direction of my own life. But as a mantra or a mind set – no thanks. If someone could prove with solid evidence that thinking good thoughts would change the course of my life, my cancer, or my treatment for the better – would I become a positive thinker? Show me the proof and I’ll get back to you on that one.

I was recently interviewed in a slide show feature by Lori Hope called When Positive Thinking Isn’t Working, Get Real,  along side  Barbara Ehrenreich and Dr. Jerome Groopman and others. I loved seeing realistic thinking addressed as a valid and practical tool to help cancer patients cope with the emotional and practical side of living with this disease. It’s a must read.

Do you consider yourself a positive thinker, a realistic thinker? What does that mean to you?  If you are not big into positive thinking - how do other people respond to that?

For more cancer conversations about realistic thinking, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

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.

Some will fall in love with life
And drink it from a fountain
That is pouring like an avalanche
Coming down the mountain

I wanted to use this quote as the first page of my new book, but then I thought better of it. If you had never heard of this band, cracked open a book and saw the words “Butthole Surfers”, you might be slightly deterred.

The song has nothing to do with cancer and is a pretty harsh reality check about young people dying. So why do I love it so much? First, the music is an incredible receptacle for the of non-verbal, physical angst that piles up in my body, like right now as I’m only six days away from my check up. Blasting this song and dancing in my living room is an essential in my repertoire of fidgety distractions.

Secondly, I love the combined images of swallowing up life and having it cave out from underneath you. Avalanches are the most accurate depiction I have ever seen of what it feels like to be diagnosed with cancer as a young adult. You are sailing along, and it is not that you trip, or fall, it is that the entire face of the mountain you are on crumbles away beneath your feet and you go flying with it. Forget chanting or peaceful meditation; watching the intensity of avalanche videos just feels down right healing to me. Step away from the You Tube!

Do you have a cancer anthem song? What symbols, images, or metaphors do you relate to that describe your cancer experience or what it means to be a “survivor”?