Everything Changes - The Guide to Young Adult Cancer

By Kristen Schindler

Cancer has a way of destroying the parts of you that you define yourself by. I felt cancer destroyed my ability to push my body to do great things.  I am an athlete, but my treatment for Hodgkin’s Lymphoma sucked away most of my energy. I played softball in college, and have invested years upon years into my athletic career. It took only six months of chemotherapy for my body to lose most of the muscle and endurance I had built up over 12 years.

I had expected to struggle physically while I went through treatment. And I even planned to give my body some time to recover once my treatment had ended.  However, I was shocked when three months out of treatment, my energy had not bounced back according to the three month timeline my doctor had given me.

This process of rebuilding muscle, strength, and lung capacity, is anger producing and depressing at times. It is a constant comparison to the pre-cancer me. I am unsure if I will ever be the athlete I was before and I do not have time to train and workout like I did when I was in college. I am terrified that my body will never fully recover from cancer, and my athletic ability is the most glaring indication of that.

I have slowly learned to give myself a break, and relish in my small accomplishments. I still want more, but I am realizing I am in the midst of moving forward. I played softball this summer, and I began to see my old self begin to shine through while I pitched multiple games each weekend. Cancer temporarily took away certain self defining characteristics, but my drive and ambition to be better and push myself is one characteristic that has not been altered.

Were you an athlete or avid exerciser prior to cancer and how has your identity changed since your diagnosis?

To learn more about how young adults handle rapid changes in their identity after being diagnosed with a chronic illness, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

On my blog I often write about the emotional impacts of cancer, but today I’m all about the practical physical side. Most patients discover small must-have items, clothing, food, or paraphernalia that helped us to physically manage daily life. Here are mine:

1. Zip-up hoodies – I couldn’t lift my arms over my head to put on a shirt after surgeries for thyroid cancer

2. Paper cups and straws – During surgery they dug around in my neck and shoulders. So sore in that area, I couldn’t lift a glass or mug to drink but paper cups and straws saved the day.

3. Pillows – A mountain of pillows, even big couch cushions, were great for propping me up in bed and taking pressure off my neck.

4. PB Sandwiches – Unable to eat packaged or restaurant food while on a low iodine diet (pre- radio-active iodine treatment),  a friend baked loaves of no iodine bread and I popped zip lock bags of peanut butter sandwiches into my purse whenever I left home so I wouldn’t be stranded without food.

5. Friends’ Old Clothes – There are strict protocols for washing clothes after radio-active iodine treatment because sweat makes them contaminated.  Friends gave me five days worth of old comfy clothes they would have donated to Goodwill anyway.  I chucked them in the trash after wearing them. No laundry and no clothes with bad memories.

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

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

When it comes to following prescription drug dosing and directions, I’m like a teacher’s pet.  I’m terrified of potential drug side effects – almost to a neurotic and paranoid level.  And I do exactly what my doctor says.  But many patients don’t or can’t.  Especially with the economy in the crapper, I know a lot of people who are splitting pills or skipping out of medications all together.

There have been times, however, when I’ve made educated decisions to go against my doctors’ orders for procedures.  I don’t have a medical degree, but I do have a ton of common sense and research the hell out of my disease.   And sometimes it makes more sense to me to disobey what my doctor is recommending. Here’s an example:

The last time my doc ordered a biopsy of nodes that were half a centimeter, I said, “Forget it.  Let’s watch them and if they grow larger than 1 centimeter, I’m game.” I’ve done my reading.  Medical guidelines don’t recommend biopsies of puny thyroid nodules less than 1 centimeter because the results usually come back as inconclusive.

But, sometimes my desire to disobey my doctors isn’t because of common sense examples like this.  It’s because I’m scared of pain.  I loathe anesthesia.  I don’t want to make one more trip to the friggin hospital.  I’d like to forget the trauma of being a young adult cancer patient.  These are the times that I fantasize about disobeying my doctors.  But still, I drag my myself to the hospital for the scan or surgery anyway because it is the smart thing to do.  (Says the woman who is long over due for a pap smear.)

I try hard to leave my emotions out my medical decision making. I don’t believe in using prayer, faith, or hope when it comes to making sounds medical choices either. I am a staunch believer in evidence-based research and common sense.  I am shocked though how often my really top-notch doctors do not approach my case with common sense.  This most often happens when they are racing the clock, or treating me as a statistic and not an individual whose symptoms and responses don’t always match the typical patient.

I’m not trying to promote Bernard Getz style medicine.  But I am interested in taking action when educated, logical decisions makes more sense than my doctors’ recommendations.

Have you ever disobeyed your doctors orders?  What was your reason for doing so?  Have you ever wanted to disobey their orders but been too scared to?

Read Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s to learn about Geoff who ignored his doctor and went mountain biking the day after his port was installed.

I get winded from climbing a flight of stairs.  This is pathetic.  Aside from having two tumors in my neck (which have no impact on my lung capacity) I’m not sick.  I’m just lazy. I’m a skinny, out of shape weakling.  I’ve always hated exercising.

I’ve been a dancer and choreographer most of my life.  But to me it never was exercise; it was a profession.  Since my first surgery I’ve suffered from dizziness that keeps me from dancing.  I feel like I’ve been evicted from the heaven of the dance world and am now walking among mortals who have to face the drudgery of jogging, yoga, and stair masters.  I find exercising utterly and mind numbingly boring.  I detest it.

I’ve tried many strategies to get myself to exercise.  Positive reinforcement: Reading clinical studies about exercise benefits for cancer patients.   Negative reinforcement:Imagining myself  with osteoporosis.  Guilty reinforcement: Thinking of young adult cancer patients who are too sick to even walk.  Creative reinforcement: Rearranging corners of my house as workout space.  Retail reinforcement: Buying a new pair of Adidas.  Practical reinforcement: Creating 20-minute exercise schedules n my mind.  Writerly reinforcement: Writing tips in my book Everything Changes on how to get back into exercise after surgery and treatment.  None of these tricks have worked.

As a cancer patient, I’ve learned that sometimes how I think and feel about something doesn’t really matter.  Sometimes in life you have to force yourself to do things whether you want to or not, like having surgery or radiation. So if exercise is boring to me maybe that just doesn’t matter.  Just do it.  I’m lazy and unmotivated?  Just do it.  Maybe this is why Nike’s slogan Just Do It really stuck.  Perhaps it appeals not only to motivated athletes but also to lazy consumers like me.  I originally thought that writing this blog post outing my slothy lifestyle would shame me into exercising.  I don’t think so.  No trick is going to work for me.  I just have to do it.

Do you have a love, love/hate, or hate relationship to exercise?  How does illness impact your exercise choices?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for tips and recommendations on how to safely exercise after surgery and treatment.

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My hospital is around the corner from Gucci, Coach, and the Apple Store.  (Swank huh?)  I’m sure sneaky shoppers try to park in the hospital garage at patient rates.  It’s the front desk staff’s job to make sure they don’t.

A few years back, I had a particularly horrible post-surgery appointment: The doctor was great but the news was bad.  It took three hours and involved an unexpected and painful biopsy of newly found tumors.  The doc explained why the samples looked extremely suspicious of cancerous.

Shannon and I were crushed, our minds fried, our bodies exhausted.  We waited in line for the elevators, made it down to the lobby, and waited in another line for parking validation.  “I can’t do your ticket.  I need to see that you were at a doctor’s office.  Go upstairs and get them to initial a blue slip,” the front desk woman said while multitasking on her cell phone.

We know the parking routine well, but we totally spaced this time.  I pointed to my fresh, turtleneck-sized bandage. “Ms., I just had a surgical procedure.  I’m a cancer patient in a lot of pain and need my husband to get me home fast.  I don’t think I can make it back upstairs.  Can you call my doctor’s office for verification?”   No.  She would not budge.

As Shannon began the trek back to the doctor’s office, I told her to get a job where compassion is not needed, where she doesn’t have to think too hard or interact with cancer patients.  I dropped plenty of F-bombs into my statement.

Yesterday was Yom Kippur, the Jewish holiday where you atone and ask for forgiveness. This incident came to mind, even though it was a few years ago.

Living with an incurable illness can be infuriating. My mother always says honey goes farther than vinegar. And she’s right.  But I’m human and have my breaking points.  Especially when it comes to inefficiency or stupidity in the medical system. The perfect, ethical, Girl Scout side of me says two wrongs don’t make a right and there are appropriate ways to direct my anger.  But the realistic side of me says cancer sucks, and if you are going to act like a total idiot to me on a really bad day, I might act like one back and not feel too badly about it.

Have you ever gone off on a medical worker?  Did you feel justified?  Did you ever apologize?  Do you think I should have apologized?

Read more outrageous exchanges between cancer patients and medical staff in 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.

Our bodies are great at remembering hard times: The smell of alcohol in a hospital makes my heart race.  I can’t wear turtlenecks because they remind me of the compression bandage on my throat after my thyroidectomy.

But the flip side is that our bodies can conjure great experiences too.  Here’s one: My body remembers the days when I was a dancer.  Heat and humidity meant my muscles were always flexible, pliable, and ready to go.  I could enter the studio and launch into the fun stuff with little need to warm up.  Now whenever I’m in heat and humidity, I feel totally motivated to do physical exercise.  (Crazy I know.)

Before my second surgery, I requested to speak with a chaplain.  I got a Lutheran minister.  I was born Jewish, but I’m not religious, and don’t believe in god.  Still, I love hospital chaplains.  In fact, if there were such a thing as God in my mind, he/she might appear to me in the form of a hospital chaplain.

He got me to start visualizing what it was like to relax in bed with my husband.  Yes, it sounded kinda trashy and weird coming from a minister, and freaked me out at first.  But I realized that he knew I loved my husband to pieces, it was really hard being in a hospital in a different city than where I live, and he was trying to make me feel at home and relaxed.  He asked me all about my bedroom.  I told him about the pale yellow walls, my mahogany bureau that belonged to my grandma, and how great it is to dive into bed and put my head on my husband’s chest.  It totally worked.  When the chaplain left I didn’t want my husband or family to come back into the room.  I was so peaceful and relaxed I wanted to be alone.

The words visualization and imagery sound so hokey and new agey to me.  But I guess that is what it was.  And it totally worked.

Have you ever used visualization or imagery to coax yourself into a better mental space during illness?  Was it useful?  Did you use the generic peaceful river scene or a place you had actually experienced before?

Many of you have said your favorite part of my book is HollyAnna’s kick ass cancer and river visualization scene read.  Read it in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My tiny little ass is getting fatter. And I wrote a comment about it today on a New York Times Well Blog post about cellulite:

“I have been stick thin for years from cancer treatments and only in the past few months have I seen cellulite on my body for the first time ever. It is kind of unattractive, but a vast improvement to looking like a victim from the camps. It might take some time to get used to, but I’m welcoming my cellulite.”

I don’t talk about my body much because in the world of women it is easy to be hated for being skinny - even scary skinny like me. I’ve always been svelte. My body was great for ballet, but freakish by other standards. ‘Toothpick legs’ was the name kids called me at summer camp. Not a confidence booster.

Before cancer I was a healthy 134 pounds. Since my hormone therapy I’m now 112 despite my efforts to gain weight. I feel like my bones are going to impale my partner, like I might be easily carried away in a storm. I catch people looking at me with tempered disgust. So yes, the ripples of fat that just showed up on my ass in the last few months are not attractive but are okay with me.

Some of you may be rolling your eyes by now thinking “whatever you skinny bitch.” I know that being underweight is a hell of a lot easier than being overweight in this culture. But my body is my body and I want to write about it.

It is weird to work so hard to keep this body alive and then to focus on something as seemingly shallow as looks. But how we look can often impact how we feel about ourselves, and that is something worth writing about.

Has your body changed shape or size from surgery, treatments, hormones, steroids, lack of activity? How have you adjusted to this change? Do you feel like other people notice or comment on your size? How often do you think about your appearance?

I have a horrible history of arguing with PETA (People for the Ethical Treatment of Animals) advocates, like the big Foie Gras debate in Central Park where the PETA volunteer almost clobbered me with her clipboard.

I now have another beef to pick with PETA. (Would you ever know that when I was diagnosed with cancer I had already been vegetarian for 14 years, vegan for seven? I do love cows and geese, it’s just these wactivists are absurd!)

According to the blog Disruptive Women in Healthcare, PETA is sending letters to the CEOs of major hospitals urging them to reduce their carbon footprint by eliminating meat as an option to patients, visitors and employees. I like the response of Glenna Crooks, the blogger who posted the story. She argued that transitions to meat free diets take time for our bodies and schedules to adjust to, and there is a learning curve for educating oneself about proper vegetarian nutrition.

I agree with Glenna. During and after a hospital stay is not the right time to throw another wrench into a patient’s already complex and life altering care plan. Hell, if some of us in cancer treatment or after surgery can manage to swallow a bite of boiled chicken or sip beef bullion, it is cause for a celebration not a PETA demonstration.

Hospitals should try to reduce their carbon footprint, but they should look to The University of Pittsburgh Medical Center as an example of how to do so through adopting energy efficiency standards.

Are you, were you, or would you ever be vegetarian or vegan? Do you think it is a good idea for hospitals to impose that dietary choice upon patients? What food worked best for you during cancer or other illnesses and could you have gotten by without a bowl of chicken soup?