Everything Changes - The Guide to Young Adult Cancer

I am allergic to routine.  The mere mention of the word ‘schedule’ makes me nervous.  I thrive on procrastination, such as writing a chapter or manuscript when the timing is right for me instead of by the calendar.  While my fly-by-night timing sometimes worries others, I know how I work best; under pressure I always meet a deadline.

But what happens when life itself becomes a tremendous pressure under the constant burden of illness or caregiving?  For me it is too much and routine becomes my salve.

Recently, a family member was in ICU.  It was scary.  I wanted to meet with the doctor on each of his rounds.  I wanted to make sure my loved one was getting the right meds, not being subjected to unnecessary tests, and receiving the best care possible.  I also wanted to make sure I got the rest and food I needed to stay healthy, especially given my rickety immune system, stress load, and exposure to hospital germs.

Each night I left the hospital around 10 pm.  I made sure to grab a meal with lots of vegetables and protein.  By 11 pm I popped a small dose of xanax, reserved for anxiety provoking times such as these.  And though I am not a fan of David Sedaris, I found a copy of one of his books on a shelf in my uncle’s apartment and read it every night as I fell asleep tucked into the living room sofa.  His writing felt like an NPR hipster version of Chicken Soup for the Soul.  His mildly entertaining stories and obnoxiously irritating points of view lulled me into the sleep I desparately needed to face the next day.  I made sure to read a page every single night.

Living with an acute medical condition, be it your young adult cancer or the flare of another illness, involves navigating the fear of the unknown.  The desire to have stability, a knowable schedule, and predictable routine makes perfect sense.  To exert some modicum of control of our out of control lives is sometimes the best medicine of all.  (Note: This post was written in the comfort of my bed five days before my house move and I have not yet begun packing boxes.)

For more tips on coping with young adult cancer check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I am a huge daydreamer.  My mind is a separate universe with lots – sometimes too much - going on in it.  This can be really helpful when I want to vanish from a situation that I am unable to actually physically escape from.

This seems like a good topic to talk about now, either for those of you who need a mental vacation from illness, or a mental getaway from too much family togetherness around the holidays.

When I am laying on a table getting ultrasounds, I choreography ballets in my mind.  I also love obsessing over the details of dinner parties – I plan menus, table settings, and fantasize about floral arrangements.  I’m also quite addicted to mental wedding planning.  It’s all pretty girlie, I know.  My own wedding got me through a years worth of cancer scans, and now I have moved on to making mental schemes about my friends weddings too.  (Congratulations Dan and Sara on your engagement!)

When I am waiting for test results or anxious about new symptoms occurring in my body, I zone out on apartmenttherapy.com.  It is heaven online.  I am also really into looking at the furniture listings on craigslist.

Without my vivid imagination and ability to totally check out when needed, I think I would have had a serious mental breakdown by now.

Do you daydream when you are stressed out, need to escape your surroundings, or get a break from medical hell or too much family time?  Where does your mind go?

Learn about Greg’s boat building daydreams in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I got an email last night from a cancer patient.  She asked that I not use her name.  So I’ll call her Mia.  She wanted me to pose a question to you:

“The day I received my fourth diagnosis, I called my mother on the phone balling, crying. I could barely talk.  ‘How f***ing strong do I have to be?  Four times.  Four f***ing times,’ was all I could say.  I was in shock for days.  I live in a neighborhood with a lot of alcoholism.  After many years of not drinking (because I wanted my children to know they have a choice to not drink), I was at a friend’s house and grabbed a beer. Later that same night I drank more in a bar.  Driving home from the bar I got stopped by the cops. I got a DUI.

“Months after my surgeries and treatments the charges were reduced.  I’m in remission again.  Now I have to contend with all my mistakes. I honestly have no idea what happened to me.  It was something that my ‘healthy’ self would not have done.  How many others out there reach their breaking point and throw their hands in the air and just say ‘f*** it’ and have a moment of insanity or self-destructive behavior?”

Mia’s not alone.  In Everything Changes, I write about Wafa’a, a young adult lymphoma patient who cut herself as a teenager and began again after recurrence.  Wafa’a said, “When I get a cancer diagnosis, I feel sadness, frustration, anger, loneliness, and really violent, like I want to break something and freak out.  Some people get anger out externally but I want to take it out on myself.”

I too understand the need to explode from cancer’s intensity.  A few times I’ve craved dragging hard on a cigarette  but just could not go there.  The day after I received test results showing a rare variation in my cell type, I chucked a dozen eggs against my shower walls while screaming and crying.  It was satisfyingly messy and violent, but safe.  (I now think shower drains should come with disposals for shells.)

Like Mia, have you ever had a breaking point of insanity or self-destructive behavior?   Have you found any safe and healthy ways to let your violent anger out?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Tracy, Wafa’a, and Geoff navigated through self-destructive thinking.

Wedding season has officially started, so I’ll tell you a little tale about my own wedding.

Shannon and I were slated to get married in an old factory in Pittsburgh. (We love urban decay and grunge.) On a site visit three days before our wedding we discovered more grunge than we bargained for. Water was raining out of the ceiling, and serious mold infestation had set in – our guests would need hazmat suits just to step foot in the building.

Our response? “Oh, this is fixable.” We made a list of alternate spaces (a cool yoga studio in an old school house, a fire hall, an installation art museum), called around town, and found a great solution within 24 hours. Stressful? Yes. Earth shattering? Far from it. We were calm and cool. My mom and her friend were amazed that I didn’t cry or transform into a ready for cable TV bridezilla creature.

I didn’t consciously say to myself: ‘My cancer is not curable, but a ruined wedding location is.’ Yet, I know that this perspective played a large part in my no big deal attitude. I am way too neurotic to think that cancer has chilled me out; I still sweat small stuff. But having cancer as a young adult has taught me well how to be calm during crisis.

Have you had any major moments when you been able to brush off a seemingly stressful situation because it pales in comparison to the stress of illness? Do you find yourself saying more often “This is no big deal” or “I can handle this”?

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 was on myplanet today and read a member’s status “I am trying to get a hold of myself.” I think we can all relate to this if we are dealing with a cancer diagnosis, chemo, radiation, waiting and watching, or another illness, or any kind of life fiasco, such as unemployment.

I spent two days on the Yakama Reservation with young adult cancer survivor Holly Anna DeCoteau Pinkham. (Some of you know her from Planet Cancer and LAF too.) I included the juiciest parts of our conversation in my book. Here is piece of HollyAnna wisdom that really stands out to me when I think about getting a hold of my life:

“Sometimes when I’m starting to crash, I go to the mountains and watch the water. Water doesn’t fight its way down the hill. It takes the path of least resistance. Still, there are rocks in the water, and that is how I look at cancer. It’s a rock. I’ll go around it, over it, under it if I can. I’m not going to fight it. Instead, I’ll let it figure out how it is going to guide my path. You have to figure out how to work with the momentum cancer establishes in your life. Otherwise, you’ll drive yourself nuts. So I have to go up to the mountains, and I remind myself that I’m like the water.”

“Fight” has become the mantra of the cancer world. I love that HollyAnna steps out of the boxing ring and ditches the “fight” while remaining an empowered, intelligent, and all together kick-ass patient.

Where do you go when you need to get a hold of yourself? (I love being a big imposing library, getting lost in it all.) What centers you or calms you? Do you have metaphors like Holly Anna’s water that get you through? Have you ever thought about not fighting? Does that scare you or give you more energy?