Everything Changes - The Guide to Young Adult Cancer

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

Before diving into their turkey, most families take time to go around the table and say what they are thankful for.  Not my family.  We are all about the food in the Rosenthal household and we always have been.

This doesn’t bother me.  I come from a very demonstrative family.  We express our gratitude on a regular basis, when it hits us in the moment.  We don’t store it all up for a once a year gratitude fest.

I do have a ton that I am grateful for in my life.  But cancer is not one of these things.  Cancer has lead me to become a less judgmental person.  I listen to others now in a way that I didn’t before.  It has also turned me into a writer.  But I feel pretty confident that I’ve always had the capacity to become a less judgmental person and a writer.  If it didn’t come out through cancer, it would have come out through another, hopefully less painful route.

A lot of survivors say that if given the choice they would chose to have cancer because they are grateful for the changes it has brought to their life.  In my book Everything Changes, I wrote about this issue at the end of my conversation with Greg, a young adult cancer patient in Alabama:

“Had good things come from my own cancer? Yes, talking to Greg in his truck was one of many, but I believed that I was a pretty decent and self-aware person who did not need this horrific experience to make me appreciate the world around me or my role in it. If people needed pain through which to learn life lessons (and I debated whether that was even true), opportunities to open oneself up to suffering abound, and it saddened me that most people do not make themselves vulnerable in this way until they have no other choice.”

My dog, my husband, my mom and dad, my father-in-law, my friends, my health insurance, and a roof over my head are on my list of things that I’m grateful for on a regular basis.  Cancer is not one of them.

What about you?  Is cancer on the list of things for which you give thanks?

Read other perspectives on cancer and gratitude in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

I’m disturbed that in recent conversation about breast cancer guidelines, I’ve not heard anybody asking the question: ‘What is the most effective way to lower breast cancer mortality rates in young women?’

Prior to this announcement, I’ve spoken with staffers from key organizations serving young women with BC (breast cancer). They told me they’ve never seen studies on whether breast self exams (BSE) lower mortality rates in young women. I’ve read articles in which policy analysts and scientists agree this needs to be studied.

Cancer is terrifying and it is down right frightening to have BSEs diminished as a guideline when they are the one thing we have come to think of as a hopeful solution for young women.  But instead of defending a tool about which we have little scientific information, why don’t we get motivated about researching what will save our lives?

I’ve heard tons of stories over the years about young women who’ve found their BC themselves and use this as justification in favor of BSE.  We do know that across every age group the majority of BC is first found by women touching their own bodies accidentally or intentionally.  Nobody is debating this fact.  However there is a world of difference between the two questions of: “Do women find lumps when they do BSE?” and “Does doing BSE lower the mortality rate in young women age 15-39?”

Stories are motivation to find answers, but they are not the answers themselves.  The reason we draft legislation and raise money with walk-a-thons and pink ribbons is to fund smart science to help us make the most effective choices about preventing, detecting, and treating BC in young women. I wish the $45 million in Representative Wasserman’s EARLY ACT was directed towards investigating how to best lower mortality rates in young women with BC.  Show me a piece of evidence saying that BSE in young adults lowers the mortality rates of 15 - 39 year olds, and that the benefits of this outweigh the harms, and I think we will have hit the jackpot on what we need to do to take care of our generation.  Until then, as a community we need to demand that young women be taken seriously, and that government dollars be spent on researching our diseases so we can find  the most EFFECTIVE ways to save lives.

Cathy Bueti, a breast cancer survivor and author of Breastless in the City says:

“Although I found my lump it was not from doing a monthly BSE.  I never consistently did them.  Even today I only get thorough breast exams  when I see my doctors twice a year.    If I did BSE I would be on the phone every month in a panic with the doctor.  Young adults have crazy hormones that can cause frequent changes in breast tissue.  BSE can lead to unnecessary biopsy and is not going to increase survival rates in young adults.  I was told the lump I found most likely was growing for 10 years so it did not ensure early detection in my case.  However, I do believe it is important to stay familiar with your breasts so if you do find something that was never there before you can followup on it.”

As patients it is our obligation to know about breast cancer guidelines from scientific perspectives in addition to our own stories.  Here are some important links.  Read up!

U.S. Preventative Services Task Force (USPSTF) -  These are the folks who issued the guidelines and this link has their research and rationale.

National Breast Cancer Coalition Fund - These folks are an umbrella organization for a lot of other familiar cancer organizations.  This link takes you to a page where they discuss the needs and concerns about young women and breast cancer funding, research, and prevention.

Breast Cancer Action - These are some of the coolest gals in the breast cancer world.  This link talks about their take on mammograms in women age 40-49.  Yep, some of us in the YA cancer community are getting close 40!

Let me know what you think about whether young women’s voices have been included in this conversation.  Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

Ever since I was a little kid, I’ve had a huge don’t mess with me attitude.  I’m a scrawny Jewish girl, but am quite in touch with my inner Rambo.  It’s no surprise to anyone who knows me that I am a really aggressive cancer patient. But lately I’ve been wondering if aggressive is always the smartest choice.

Sometimes I’m aggressive out of fear.  Living with cancer is damn scary.  It’s easy to want to pull out the big guns so I can feel forceful in fighting my disease.   My doc told me I could lower the dosage of my medication slightly.  Instead of embracing the prospect of diminished side effects, I want to stay at the highest dose possible.  It’s a bit of a “Thank you sir. May I have another?” attitude.  A hurts so good attitude.

But is my choice pro-active and aggressive or just misguided and stupid?  Harder and stronger isn’t always a guarantee of healthier.  Many women still choose to get mastectomies for peace of mind in circumstances where they are not medically necessary.  A family member chose to take a very strong chemo that was not medically necessary because it made her feel proactive.  But what does peace of mind mean if the science doesn’t really back it up?  Should we invest in comparative efficacy research when so often patients make emotionally based choices?

Taking high doses of my medication makes me feel like an aggressive patient.  But an aggressive patient is someone who questions, reads, looks at their illness from all angles, and makes smart decisions.  And sometimes the smartest decision is the smaller, quieter action.  Or even no action at all.

Under the guidance of my doc at Memorial Sloan Kettering, I’m doing a wait and watch approach.  I’m living with two active tumors in me instead of having more surgery.  Many people can’t run fast enough to the OR to have tumors removed.  For my case, aggressive surgery isn’t the smartest choice right now.  I’m doing a pretty good job of tempering my inner Rambo and sitting tight with my guns at bay.  You’d think if I can convince myself to wait and watch, I could also convince myself to ratchet down my medication.  It isn’t happening yet.  I still need a security blanket.  And for now, my higher dosage of medication is it.  Aggressive? Yes.  Smart? Not necessarily.

How do you define being an aggressive patient?  Have you ever become dependent on the hope that stronger, harsher medications or procedures will make you better even if the science isn’t there?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Greg balanced smart and aggressive decision making.

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.

When  I was 27 years old, I sat on a pleather exam table and had a doctor two years older than me tell me I had cancer.  Everything in my life changed.  But, this is actually not why I called my book Everything Changes.

During cancer treatment, many patients rack up hours sitting on their toilets.  I kept a big stack of reading material next to mine.  I would open to random pages in the Tao de Ching, a Chinese philosophy book written in the 6th century BC.  One day in the midst of wishing my life were different, that my body aches would subside, that I would not be single on a Saturday night sitting on the toilet with cancer – I opened to a random page in the Tao de Ching and pointed to the words ‘Everything Changes’.  And it is true.  I’m now married. I still have cancer but I rarely have body aches.  And I spend much less time in the bathroom.

The mantra ‘Everything Changes’ gets me through the hardest moments of living with cancer.  No matter what any of us are experiencing right now, a basic truth is that everything changes.  It is great to know that I won’t stay stuck anywhere forever.

I’m not naive.  I know change could lead me down hill instead of up.  But that’s just reality.  I don’t need magical thinking to get me through tough times.  I just need a bit of truth that keeps me moving forward.  Everything changes.    That’s real.  That’s something I can count on.  And in desperate times, having something to count on is my definition of hope.

I loved talking to Tracy, a breast cancer patient in Alabama who I interviewed for my book.  Before each treatment, she sat in the parking lot and read Psalm 23.  Do you have a favorite quote, phrase, scripture, or mantra that gets you through hard cancer times?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy and how she coped with treatment related fear and depression.

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.

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.

Today I’m hosting Patients For A Moment, a bi-weekly blog carnival with links to select patient blogs.  I’ve created four themes for this edition. Enjoy reading and be sure to catch the November 18 installment on Chronic Babe.

Melting My Stone Cold Heart
After the flood of breast cancer stories in Pinktober, I wondered if patient stories could still melt me or if I’d become inoculated and immune to the tender heartedness of illness.  Nope.  Nine year old Chloe made me melt.  Steve Catoe writes about her in A Beautiful Heart on his blog Adventures of A Funky Heart.

Intimacy is palpable as banter unfolds between Alex Hohmann and his nurse Jill in Laughter Where You Least Expect It on Aegletes: Alex’s thoughts on cancer, politics, being gay, music and so much more.

Can we wear our feelings and kvetch about a new diagnosis or do we have to be good solders fighting the good fight?, wonders Barbara Kivowitz in The Shape of Grief on her blog In Sickness and In Health.

Helping 101
Need Cliff Notes for schooling family and friends on how to help you when you’re sick?  See Bridget McCullough’s  Back From the Brink on My Cancer Deployment.

Chris Blumer’s  A Streetcar Named Dilaudid on Chemo and Vino dives into the emotionally charged terrain of saying ‘Thank You’.

Do you get help from God or find strength in flying solo?  Here’s the post that elicited the comment “Nobody likes someone pissing in their Jesus flakes.”   What’s Your Cancer and Religion Connection? on my blog Everything Changes.

Practically Speaking
Young adults are the largest group of uninsured adults in the U.S., forcing us to be practical and clever about getting care.  Leslie Rott writes about    The Things We Do For Health Insurance…Er…I Mean…Love on Getting Closer to Myself.

Living with chronic illness?  Need tips on how to pack a suitcase and so much more? Visit Chronic Babe and check out Fibromyalgia: HealthWomen host tons of new tips, including videos with Editrix Jenni Prokopy. We know she can write but she’s damn articulate in front of the camera too.

Looking for practical excuses to ditch a bad date or escape a spousal argument? Read Duncan Cross‘s hilarious  Dr. Cross’s Compendium of Useful Illnesses.

Laurie Edward’s writes about handling life Priorities in the “gray area in between the everyday and the extreme” on A Chronic Dose.

Eating is a pretty simple daily task - well sometimes.  Cathy Bueti talks about how juicing became an obsession in My Juicer is Dusty on In My Life.

Thinking is a pretty simple daily task - sometimes.  Kate Burton outs her stammering brain fog in My Chemo Brain on After Cancer, Now What.

Dictionary Love
My inner-author and inner-patient geek out together over words, language, and medical meanings.  I’m glad to know I’m not the only one.  Kelly Young dissects the technical meaning of ‘complications’ in  Reasons to stop saying “Complications” of Rheumatoid Arthritis on Rheumatoid Arthritis Warrior.

Dr. Wendy Harpham asks ‘What’s the difference between a disease and illness?’ in “Disease” or “Illness” on Wendy Harpham on Healthy Survivorship .

Selena Inouye’s S word in Each Has Their Suffering on Oh My Aches and Pains.

Pat Steer tells what it means to be a statistic in I am A Statistic on Life Out Loud.

Have fun reading, then stop back to let me know which blogs you visited, which posts struck you the most and why.