Everything Changes - The Guide to Young Adult Cancer

A few days ago I had a fever. Sometimes simple aches and pains catapult me into an irrational headspace where I’m reminded of treatment, begin to sweat bullets, tremble, and my heart races. (I know I’m not alone in this as many of you weighed in on similar experiences in my post Scared of Every Little Ache and Pain?)

When I’m in this snowballing panic mode it helps to talk to someone about my fears. Often it’s my mom, my husband, or a friend. But the other night I wanted to talk to an insider. So I called a cancer hot line. I didn’t care if the person on the other end was a patient, professional, or a caring volunteer. It just felt cool calling someone whose whole goal was to be awake in the middle of the night waiting for a call like mine.

I described to the woman what was going on for me. Her reply: “Count your blessings. Did you say you have a husband? You should be so grateful you have a husband. Do you know how lucky you are? Just count your blessings and you’ll see things aren’t so bad.”

She was right, my panic wasn’t quite so bad anymore. Instead, it was replaced by a flood of anger, a desire to reach through the phone and smack her. I hung up and called two other hot lines. Both told me I needed to see a therapist. That was all they had to say. Seeing a therapist can be very helpful for some people at the right time. But it actually isn’t what I need now, nor was it what I needed in that moment. What I wanted was to be deeply listened to, to feel validated, to have confirmation that was I was experiencing was hard yet understandable. I didn’t want my experience to pathologized, erased, or negated with positive thinking BS.

I have researched loads of cancer community resources, but not call-in hot lines. From my experience there certainly is a dearth of good ones.

Who do you call when you are freaking out in the middle of the night? What do you want to hear from them? Have you ever called a cancer hot line? Do you have any good ones you can recommend?

Read Everything Changes to learn about the crafty places and unusual people that patients have turned to for stellar support.

When I lived in San Francisco, nobody batted an eyelash at dropping into casual conversation mention of a trip to their therapist.  “Oh, I had a really great breakthrough at my therapy session yesterday” was on conversational par with telling someone “I tried a fantastic new recipe for kale smoothies.”

But San Francisco is not the rest of the country.  (In fact when I moved to Chicago, I realized that San Francisco is sort of its own country.)  Out here in the rest of the world, therapy is often seen as a luxury item or something that crazy people do.  There can be a lot of resistance, embarrassment, and silence about seeing a therapist.  So where is the middle ground for chronically ill patients who are struggling with the stress of their disease and need some help?

I am dedicating this post to a young adult cancer patient who I have become extremely close with over the past three years.  She has been through the wringer with cancer and endless chemotherapy.  She is in a funk and it’s totally understandable.  25% of all cancer patients suffer from depression, and the rate is even higher for young adults. But, my friend lives in the deep south where nobody talks about seeing a therapist. In our last conversation, I got the sense that the idea of going to therapy made her feel like a freak.  Her oncologist has suggested it many times; I thought it might sit better if she heard the experiences of other patients who are trying to manage their own emotional ups and downs with cancer and chronic illnesses.

Give her your therapy 101: Have you ever seen a therapist because of depression, stress, or anxiety related to your illness?  What did you talk about?  Was it useful or not?   How is it different than talking to a friend or your partner?  What other ways have you coped with depression?

To learn more about illness and emotional support, read about Tracy in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

If you’ve read Everything Changes, you know the saga of my sudden onset cancer claustrophobia.   Since cancer, sitting on an airplane feels to me like the Star Wars trash compactor scene.  I’ve chalked it up to either post-traumatic stress disorder, or the anxiety that can be a common side effect of the high doses of thyroid hormones I’m on.

Over the past couple of years xanax has become my flying friend.  Without xanax I could not have flown to my San Francisco surgery, checks ups at Memorial Sloan Kettering, or to see my friends and family.  I also only fly Southwest because they are super sweet and let me sit in the front row where I can see the door.

But something totally odd has happened: with no explanation, my raging claustrophobia has quite suddenly simmered down.  I’ve flown xanax-free on my past four trips to speaking engagements and book parties.

This past week I was speaking in Pittsburgh.  I woke up one morning on the trip and in that limbo morning mind state of half-dreaming, I confused being wheeled into surgery and getting anesthesia with boarding a plane and flying.  For just a moment, the two were the same.  I started freaking out, but my phone rang and woke me up.  It was amazing to see my two fears come so head to head in my mind.

I am thankful that my mind is chilling out.  And, I’m really curious about the mystery of what has made this go away.  If I knew, I’d share my secret.  Have you developed any fears or anxieties since your diagnosis, or as the result of any other illness or trauma?  How have you coped with it?  Has yours ebbed and flowed?  Ever suddenly receded like mine?  Does anxiety ever hinder your daily activities?

I went to high school with a guy named Ram Gordon who is now a cardiologist. He has a great post today on the New York Times site in which he reminisces about watching ER with his roommates as a med student 15 years ago.

His post made me remember when as a kid and my whole family sat glued to St. Elsewhere on Wednesday nights, watching Mrs. Huffnagle’s death by hospital bed. Oh, Ed Bagley Jr. before his eco-trip. Oh, hot Denzel in his youth.

But I’m now jealous (only slightly) of my friends who have had a great Thursday night escape with what seemed like one of the few quality TV shows on air. Since my cancer diagnosis, I’ve tried watching ER many times, but couldn’t stomach the palpable reality of the hospital. It was as if I could smell the rubbing alcohol wafting off the screen. Great TV to one is post-traumatic stress to another.

Last month I rented Synecdoche.  I liked Charlie Kauffman’s other twisted and addictive movies, Eternal Sunshine of the Spotless Mind, Adaptation, and Being John Malkovich. But when Kauffman’s wacky brilliance mingled with the plot a theater director suffering from strange symptoms that shut down his autonomic body functions, it flashed me back to my life as a 27 year-old choreographer, when docs spent a year and a half trying to figure out what was wrong with my body before I received my cancer diagnosis.  Those were the days when I’d fall asleep in the morning on my cold bathroom floor after brushing my teeth because I couldn’t make it back to my bed. I turned Synecdoche off after 45 minutes.

Are you able to watch movies and TV shows about hospitals and disease?  If so, what are your favorites and why?  Are med shows and flicks comforting in their familiarity or do they hit too close to home?   Has illness or being a cancer survivor made you squeamish or desensitized?

It is flu season.  Everyone has the flu.  I don’t, but having just typed that, the tiniest threat of superstition is upon me and I’m afraid I’ve jinxed myself.

I think to many outsiders, the flu might seem like nada compared to having cancer.  In the grand scheme of things it is.  But my physical body doesn’t really live in the grand scheme of things.  Joint pain, chills, fever, and nausea happen in real time, not ‘grand scheme of things’ time.  In fact, sometimes I think having the flu is worse for me since my diagnosis because it resurrects so many bad memories.

Since cancer, I better understand the concept of post-traumatic stress disorder.  For some patients the smell of rubbing alcohol or the sound of shoes on linoleum bring back horrible memories.  Prior to my treatment, I had a three month long fever as a side effect from a preparatory drug. Having the flu careens my body back into those three months.  I feel like I am approaching the terrifying prospect of treatment.  In my mind I know I’m in present time, I’ve got the flu, I’ll recover, but my body is totally disconnected and heads straight for a five alarm panic attack.

Now, at the slightest sign of the flu – aching skin, a twinge of joint pain, sudden change in my body temperature – I don’t reach for vitamin C, Thera-flu, Echinacea, zinc, or Tylenol.  Instead I crack open my big orange bottle of xanax.

If you are a cancer patient, what is it like for you to have a common cold or flu now?  Any easier or harder than before cancer?  Does being sick make you anxious?  Do you ever feel symptoms of post-traumatic stress disorder?  If so, what triggers it?