Everything Changes - The Guide to Young Adult Cancer

Kim, a thyroid cancer patient, responded to my last week’s post about tips for handling family during illness:

“I think I might be the only person in the world who hasn’t told her own parents about her cancer diagnosis.  :P  From growing up, I know that my parents, esp my mom, would totally freak out if she ever found out about my thyroid cancer.  She would try to control every last food item that I put in my mouth and would probably try to come live with me (uninvited).  With my work and life, I couldn’t deal with any of that drama during and around my surgery, which was over 3 months ago.  Now, though, I wonder how long I can keep this secret from them.  Any thoughts or advice on breaking this type of news ‘after-the-fact’ would be appreciated!  Or, validation that it’s OK never to tell your own parents?!”

I know from writing my book, Everything Changes, that Kim  is not alone.  I’ve met and written about other people who chose to not tell their parents about cancer and other serious medical conditions, or who denied their parents’ help and presence during treatment.  There are rare circumstances where it may be a smart choice to wait to tell your parents.  If your parent is irrational, you have an extremely stressful relationship, or they have a mental illness that prevents them from being helpful, empathetic, or supportive, going through cancer care without your parents and with an organized set of stable, supportive friends might be the best choice for you.

Kim, I don’t know that there is a right way to tell your parents, but here are a few things that come to mind that could be helpful:  Do it in person if possible;  Don’t do it in public; Ask a stable family member (a cousin or aunt) to be present with you (or if you have to do it over the phone ask them to call your parents after you’ve spoken with them); Bring or send simple, written information to back up good, rehearsed definitions about your disease, your treatment path, and how it impacts your daily life;  Think about how to answer when they ask “Why didn’t you tell me?”  If it’s a good time to dive into the root of your relationship problems, then prepare for how to have that conversation.  Otherwise, prepare strong statements about how and why not telling was the most supportive thing for you.  And acknowledge that you understand why they might feel hurt by your choices; Alert your friends about the conversation so they are there afterwords to give you the love and support you deserve.

I’m curious what words of advice or support other people have for Kim.  Have any of you hidden your cancer from your parents or waited a long time to tell them?

Read more about how other young adult cancer patients handled relationships with their parents in 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.

Some people feel their body doesn’t belong to them anymore during illness; it belongs to the doctors.  With cancer, I didn’t just surrender my body,  I also relinquished the privacy of my home.

During surgery and treatments, my mom traveled to San Francisco and moved into my studio apartment.  My kitchen was in a separate room and she retreated there to read, quilt, and write letters, trying to give us each a shred of privacy.  I never asked her for this seven feet of privacy.  She probably needed an escape from caregiving as much as I needed to feel like a grownup with an ounce of independence.

I’m not a clean freak.  Some days it looks like a tornado tore through my home.  But during cancer treatment, I wanted everything in its place.  I suddenly liked things tidy, wanted the floor swept, and my bed made.  I wanted control over my domain.  At 27, I was suddenly roomies with my mom who I had not lived with for 10 years. It was a tug of war.  I needed and wanted her there providing household help and emotional comfort. But I also wanted to feel like an adult with a life and a home of my own.  I wanted to cry alone sometimes and to eat cereal for dinner without being questioned.

Lots of patients in my book Everything Changes adapted to new living situations during treatment.  Some had a revolving door of friends with keys to their house dropping by to help with errands.  Others had to make a hospital room their home, and some moved in with parents or cousins.  We all found ways to stake out territory in our less than private shelter.  During my second treatment, when friends stopped by with food, I got good at telling them when I wasn’t well enough for them to stay and chat.  Dana’s mom posted a large sign on the door of her hospital room instructing nurses when they could and could not enter.  When Wafa’a moved in with her folks she lit candles and listened to Nina Simone making her bedroom a retreat from the rest of the house.

In a life or death situation it’s easy to say that all we want is to be healthy.  But I think there’s a whole lot more that we can want too.  Privacy was at the top of my list.

Did you lose your private space when you became ill?  How did you cope with it?

For more strategies on coping with cancer and privacy, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I cannot imagine anything harder than being a parent and watching your kid have cancer. My mom has done it for nine years. Holy smokes. She is amazing and since it is Mother’s Day I thought I’d tell you why:

1. She lets me call her anytime of the night to cry or just talk on the phone.

2. She is a great listener. She gives opinions but is never judgmental.

3. She always lets me know she is a plane ride away, and she has hopped on plenty of planes when I need her. (Thank you Southwest for your cheapo Pittsburgh to Midway tickets!)

4. She runs into her local Barnes and Nobel to make sure they have enough copies of Everything Changes in stock, stops in at cancer centers to talk up my book to social workers, and she set up a table at her local Curves for people to buy copies of my book.

5. She is feisty while still being lady like. If someone spouts stupid cancer comments to her (like the time someone at synagogue said in reference to my cancer “God does not give you anything you cannot handle.”) she knows how to put them in their place while maintaining her dignity.

6. She has really valuable advice. “Honey goes farther than vinegar.” This helps when I am dealing with hospital administrators who I want to strangle.

7. She is funny. I have a horrible mouth and swear all the time,  so every once in a while she calls me her “fucking daughter” just to make fun of me.

8. She is a good, good person. Many Catholics have suggested that she be canonized as the first Jewish saint. She is always giving of herself to help people in need. She does it without ego, out of pure compassion and love.

Happy Mother’s Day Nancy Rosenthal!

What is your mom like? What are the incredible things your mom does for you?

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?