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’m still living with cancer in me.  But it’s been years since my last treatment.  Now that treatment is farther in the past, my mom and I are able to talk about it more, especially about her caregiving role.  She flew across country, lived in my tiny apartment, and took care of me for weeks at a time.

A few months ago my mom said, “I wish your friends had called me up and asked to meet me to lunch.  Or taken me out to the movies.  You wanted your alone time each day.  I was in a new city and overwhelmed, I really didn’t know where to go.”

The desperation of her statement was a shocker.  My mom’s no shy country mouse.  Drop her in a new city with a street map and she’s taking public transit to parts of town I’ve never heard of.  But this was different.  Few things are more painful to a mom than seeing her kid critically ill.  She needed to flee our little infirmary and zone out in front of the big screen.  I was too absorbed with my own illness to even realize.

My mom is still a huge support to me.  But my husband Shannon has now taken over as my main caregiver.  It’s super stressful for us when we are waiting for test results or dealing with my treatment and care.  I shoot out emails to his friends when it gets close to high anxiety dates (scans, big doc appointments).  I ask them to take him out for beer.  (Belgian at the Hopleaf if possible.)  Is it my job as the patient to help take care of my caregiver?  In small ways, when I am physically able, I think it is.

If you’re a caregiver, what do you do to take care of yourself and get time away?  Is it hard to make time?  If you are a patient, do you think your caregiver spends enough time taking care of themselves?  Are you able to help them get some time away?

Read hard to find practical tips and resources for caregivers in Everything Changes: The Insider’s Guid to Cancer in Your 20s and 30s.

In The Buff
I’ve been blogging and thinking about cancer and moms this week since my Monday night Stupid Cancer Show interview with Pat Taylor, filmmaker and the mother of a young adult cancer patient.

Today I dug up an outtake from my book, an excerpt from a conversation I had with young adult cancer survivor Chrissy Coughlin about moms. It opened up a different avenue of thought about nudity and cancer care. Here’s Chrissy:

“It was definitely strange when my mom was taking care of me and seeing me unclothed. But then I just got to the point where I felt very comforted by the care. It was like a job for her too. She had to do a lot of work and we had a little system down and you just kind of get over it. At first you’re like, “I don’t want you to see my boobies!” and then you just get over it. You just realize the most important thing is you have a mother there who cares about you that much to be able to help you in that way.”

I could totally relate to Chrissy. I felt the exact same way as I got used to my mom bathing me after surgery and when I was exhausted during treatment. But what about friends seeing me naked?

Silkwood
During treatments my sweat became radioactive. I was in isolation for five days and had to scrub myself down in the shower like the scene from Silkwood. It was exhausting. The day my isolation ended, I was too tired to shower. My friend Loren filled a pot and helped sponge bathe me while I sat on a towel on my living room floor. There was also a time when I was so feeble, my friend Anthony helped me to walk to the bathroom and get on and off the toilet. He stood a few feet away with his back turned while I peed.

In my work as a modern dancer and choreographer, I was used to quick costume changes in make shift dressing rooms crowded with men and women. I also lived in crunchy Boulder” for a while, where it ain’t no thang to strip down naked and hop in a hot tub at a party. I think this made it a bit easier for me to be naked in front of some of my friends during cancer.

Have you ever had to be naked in front of friends and family so they could care for you? What was it like? Did it flip you out? Comfort you? Are you any more or less modest since cancer?

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?