Everything Changes - The Guide to Young Adult Cancer

I often hear that people live more fully, more passionately after having a life threatening illness, doing things they have never done before. Not me. Since going through cancer treatment, I have a whole new relationship to physical risk. I just cannot stand it.

I used to love hiking – scrambling up rocky hillsides, walking on narrow cliff ledges, going into the total isolation of deep, deep woods. Not now. Instead of freeing adventures I see in hiking mostly risks – falling to my death, injuring myself far away from help, stumbling across snakes.

Radiation treatment was hell for me.  I reached new lows I never knew were possible.  My body now feels hardwired with the message “You are breakable.” I drive like a grandma because I know I’m breakable. I wash knives more carefully in the sink because I know I’m breakable. My fears don’t limit most of my daily activities, nor do I feel like I’ve become obsessive about protecting my body from injury. But I am surely less of a risk taker than before cancer.

I often read about people who have the cancer epiphany – realizing they had always been playing it safe or quiet in life, seeing that they’ve only got one chance to live, they come out of their shell, give life their all.  Again, not me.

I never had a cancer epiphany.  I have always lived passionately and given life my all.  I’ve always striven for my dreams, thought outside the box, not really cared what people thought of me, and rarely took no for an answer. I’m the same me, living that same life. But now, I just do it with a lot more physical precaution.

Since illness, are there new activities you’ve been provoked to do - large or small?  (Sky diving anyone?) Or, have you limited the situations in which you put yourself at physical risk?  Do you have some version of washing the knives more carefully?  Have you reached physical lows from surgery, treatment, or side effects that you never thought possible?  Did this change you?

Read about Geoff’s dare devil cancer acts in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

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.

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 injured my knee while napping on Wednesday.  (Who gets injured napping?)  Still super painful on Thursday, Shannon pushed me into my doctor’s office in a wheelchair.  The cause of the pain is still a mystery.  We joked with my doc that it’s H1N1 in my knee, or a very new and original manifestation of PMS.  He told me to ice, rest, pop Advil and check in with him on Monday when he gets back from vacation.

My doc’s going on vacation.  Well that’s what he said at first.  Then at the end of the appointment he said, “I’ll be back on Monday, it’s a simple procedure so I should be on my feet in no time.”  What?  He slipped up but obviously wanted me to think he was off to Tahiti not the OR.

The same day, I read on the New York Times Well Blog a post called ‘When Doctors Confide in Patients.’  They told about a young woman diagnosed with MS who worried out loud to her doc about not being able to have kids or work.  The doc confessed she was living with MS too, working as a doc and had kids.  It helped the patient so much to learn about the doc’s life.

I adore my primary care doc.  He’s probably my age and so easy to talk to.  He tells me anecdotes about his life in passing but I don’t have too many details.  Our relaxed conversations help our communication, which in turn improves my care.  But  there needs to be space.  If I knew too much about his life it could get in the way of him giving me appropriate care.  For example, would I be cool with him slacking off or slipping up if I knew he was just diagnosed with cancer last week?  As a patient, I should not be put in the position to have to make that decision.  I think my doc strikes the perfect balance with me of personal and private.  With docs, I think there is a fine line of TMI.

How much do you know about your doctors’ lives?  Do you like knowing about your doctor’s life, is it weird or ever too much information?

For tips on improving communication with your doctors read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

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.

When I’m feeling sick, scared, or overwhelmed by my health, I don’t want friends or family bullshitting me and telling me that everything is going to be fine. It only makes me feel worse.  In fact it makes me want to smack them.

I got a facebook message today from the wife of a young adult cancer patient whose husband is going through possible recurrence.  She said all she can do to support him is tell him she loves him and is there for him. I think she is doing the absolute right thing by being simple, honest, and real.

My friend Lori Hope wrote a fantastic and well researched book called Help Me Live: 20 Things People with Cancer Want You To Know. On the list is “Hearing platitudes or what’s good about cancer can trivialize my feelings.” Kudos to that sentiment.

I totally understand the temptation to want to make things better for someone else who is going through the ringer.  I experience this anytime someone I love is down and out.  Of course we want to fix it.  But let’s be real.  Shannon, Lisa Friedman, and my mom and dad are not going to take my cancer away.  (I’ve hired good doctors to try to do that instead.)   What they give me and what I want is simple, honest support.  They tell me they love me and understand why I’m afraid.

A bit of pink wine and really good escapist DVDs can make a huge difference in getting me through the hard times too. (Six seasons of The Wire got me through this past February and March – thank you Avon and Stringer Bell). But best of all is surrounding myself with people who can be honest with me in the face of fear.

When you are having a hard time, what do you most want to hear? Are you comforted or agitated by someone telling you that things will be fine? Do you spend more or less time around some people because of how they respond to you when you are having a hard time?