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.

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.

I got an email last night from a cancer patient.  She asked that I not use her name.  So I’ll call her Mia.  She wanted me to pose a question to you:

“The day I received my fourth diagnosis, I called my mother on the phone balling, crying. I could barely talk.  ‘How f***ing strong do I have to be?  Four times.  Four f***ing times,’ was all I could say.  I was in shock for days.  I live in a neighborhood with a lot of alcoholism.  After many years of not drinking (because I wanted my children to know they have a choice to not drink), I was at a friend’s house and grabbed a beer. Later that same night I drank more in a bar.  Driving home from the bar I got stopped by the cops. I got a DUI.

“Months after my surgeries and treatments the charges were reduced.  I’m in remission again.  Now I have to contend with all my mistakes. I honestly have no idea what happened to me.  It was something that my ‘healthy’ self would not have done.  How many others out there reach their breaking point and throw their hands in the air and just say ‘f*** it’ and have a moment of insanity or self-destructive behavior?”

Mia’s not alone.  In Everything Changes, I write about Wafa’a, a young adult lymphoma patient who cut herself as a teenager and began again after recurrence.  Wafa’a said, “When I get a cancer diagnosis, I feel sadness, frustration, anger, loneliness, and really violent, like I want to break something and freak out.  Some people get anger out externally but I want to take it out on myself.”

I too understand the need to explode from cancer’s intensity.  A few times I’ve craved dragging hard on a cigarette  but just could not go there.  The day after I received test results showing a rare variation in my cell type, I chucked a dozen eggs against my shower walls while screaming and crying.  It was satisfyingly messy and violent, but safe.  (I now think shower drains should come with disposals for shells.)

Like Mia, have you ever had a breaking point of insanity or self-destructive behavior?   Have you found any safe and healthy ways to let your violent anger out?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Tracy, Wafa’a, and Geoff navigated through self-destructive thinking.

I was interviewed in the Chicago Tribune this past Sunday about when you know it is time to ditch your doctor. For me the answer hinges on what kind of doctor it is: primary care physicians (PCP) versus a specialist. I’m actually much more stringent about my PCP, and much more lenient on my specialists. Here is why:

My PCP is the gatekeeper of my health. If they don’t ask the right questions, don’t investigate a symptom, don’t remember who I am or if my body has changed over the years it’s a big problem. In the myriad interviews in my book Everything Changes, it was most often the PCP who neglected the signs and symptoms of young adult cancer. Dana’s PCP suggested her back pain was caused by the sexual positions she was using. Mary Ann’s PCP told her she was anorexic and a hypochondriac. Both of these women had blood cancers that were littering their bodies with tumors.

I also want my PCP to connect me to the best specialists. I don’t want them randomly cracking open a pocket-guide listing of docs in my hospital system. My PCP should know who a great is gynecologist is and tell me hands down Dr. X is the best otolaryngologist on staff. If my PCP isn’t hitting these marks it is time for me to move on. I have fired my PCP and my new one rocks.

So, am I conversely forgiving of a rude specialist, who doesn’t remember my name, my medical history, isn’t as communicative? Yes. I search damn hard for top notch specialists. Top docs have access to medical knowledge years before it trickles down to the likes of an average specialist. If my specialist has horrible bedside manner – and some of mine do – I dawn armor and enter my appointments ready to access their life saving knowledge. Can their lack of communication increase the risk of medical error? It might, so I am hyper vigilant. I check my records, repeat information, ask good questions, and develop good rapport with their assistants.

Mozart was an ass but people kept him around because he created some of the most beautiful music ever written. I don’t mind if the same comparison can be made to one of my specialists. As for a PCP…YOU’RE FIRED!

Have you ever ditched your doctor? What made you fire them? Did you tell them why you were firing them? Was your next doctor an improvement?

For tips on doctor-patient communication, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

The notion of writing a letter to a body part of mine has always given me the heebie-jeebies. It reminds me of the scene in Fried Green Tomatoes when the gals crack out mirrors and befriend their coochies. Not up my alley.

But this request was different. It came from a fantastic website called Dear Thyroid, and there’s nothing cheesy or touchy feely about it: Two smart gals with thyroid disease toss out themes for reader rants that start with “Dear Thyroid.” Yesterday they posted my letter called Thycotic.

In my letter I asked my thyroid why after nine years people around me are still so curious about what caused my thyroid cancer. My suspicion is they want to know so that they can figure out how to not get what I’ve got. I wrote:

“If we truly understood the mechanisms that caused cancer, wouldn’t we be much closer to finding a cure? I’m not talking an RAI cure, I’m talking the kind of cure that makes you not get cancer in the first place. We are nowhere near there. Unexplained cases of thyroid cancer are skyrocketing (it is the fastest growing incident rate out of every kind of cancer in the United States.)

So my friends and family are going to have to shiver wondering if it will happen to them too. Because the truth is that it just might. Not cool news. But when you are facing nine years of thyroid cancer, the truth is less painful than sugarcoating. And I’m kinda learning to love life that way.”

I think from an epidemiological perspective it’s way important to study causes of cancer - environmental, genetic, and otherwise. But regarding what caused my individual case – it never really mattered to me. I’ve got what I’ve got. The question is what am I going to do with it?

Do you wonder what caused your cancer? Is it a curiosity, an obsession, have you done research? Do other people want to know what caused it? If your cancer is genetically based, what is it like to think about that?

For a great story about how Mary Ann handled her mom obsessing about the cause of Mary Ann’s lymphoma, read ‘It Girl’, Chapter 9 of my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Also tune in this week to The Group Room Radio.  I’ll be a guest along with Dr. R. Michael Tuttle of Memorial Sloan-Kettering Cancer Center, talking about thyroid cancer in young adults.  Call us on air with your questions.

I think there’s an expectation that having cancer is going to make my work, relationships, or goals in life more meaningful or important.  But why?

Shannon is going to be a guest on tonight’s Stupid Cancer Show about cancer and the environment.   (He’s an environmental lawyer for the Natural Resources Defense Council).   Preping for our interview, I asked – in my best Terry Gross voice – “Did meeting your wife, a cancer patient, reinforce your commitment to your work on the environment and healthcare outcomes?” His answer: “No.  Not really.  I cared about this work to begin with.”  Reason #210 why I love this man.

I guess the assumption is that we’re all just a bit too lazy, unkind, uncommitted, shallow, or careless in our lives and need cancer as a wake up call.  But, I think I had a pretty meaningful life before my diagnosis, just as Shannon had a pretty great commitment to public health issues before meeting me.  I’m mostly happy for people who’ve gotten more meaning in their lives from cancer.  But I’m also a bit sad for what their lives must have looked like prior to cancer if they needed this disease as a makeover.

The burden is on cancer patients to live profoundly meaningful lives because we’ve seen the light.  Be shouldn’t we all strive to lead meaningful lives, be good to our neighbors, smell the roses and help old women across the street whether we’ve had cancer or not?  Just turn on the news, walk down the street, empathize with anyone who has lost something or someone.   Wake up calls are everywhere.

It was a relief for me to hear Shannon say that my cancer was not a wake up call for him.  Call me crazy, but I’d like to think that the greatest assets I have to give him are not two malignant tumors in my neck.

Was cancer a wake up call for you?  If so, in what ways?  If not, why not?  Do you ever feel like there is an expectation that you should have become a more whole or better person because of your cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Greg and other  young adult cancer patient who said they’d choose to get cancer again because of the positive change it made in their lives.

I have yet to figure out how Wendy S. Harpham, MD, FACP manages her life as a doctor, cancer patient, author, and mom of three kids. She’s a super warm, kind person too.

In the parenting section of my book Everything Changes, I recommend her award-winning book When a Parent has Cancer: A Guide to Caring for Your Children which comes with the kid’s book Becky and the Worry Cup. (She’s the author of many other books too including The Hope Tree.) I asked Wendy to guest on my blog today about talking to kids about your cancer:

“My children were 1, 3, and 5 years old when I was first diagnosed with lymphoma. I’ve been in and out of treatment ever since. Since I didn’t get well (and I didn’t die), I was stuck dealing with the double challenges of kids and cancer. Here are my top two tips for raising healthy children When a Parent has Cancer:

1) Establish and maintain open lines of communication. Studies confirm that even when parents try to keep their illness a secret, children know something is wrong. And the fact of the matter is this: Children WILL draw conclusions based on what they are seeing and hearing, and what they know.

Open lines of communication create opportunities every day for adults to guide children toward accurate, yet healthy and hopeful interpretations of the events, and toward adaptive coping skills.

2) Always tell the truth, couched in love, hope and support. Sons and daughters need to be able to believe their parents in order to grow up into adults who, in turn, can trust others. With the added stress and uncertainty of illness, being unfailingly honest gives children buoys of assurance in a sea of uncertainty.

Whether parents mean to or not (and whether they believe it or not), to lie to children is to say, “Dear, I don’t think you can handle the truth.” Conversely, by telling the truth, parents send children a powerful message, “I respect you. I believe you can handle my illness. You can handle the truth.’” What better way to build a child’s self-esteem?

The greatest gift we can give our children is not protection from the world, but the confidence and tools to cope and grow with all that life has to offer.”

How long did you wait between when you were diagnosed and when you told your kid? Do you think your kids knew something was up? How did you explain it to them? Did you brainstorm much about what you would say, or did you kind of wing it? How did the conversation go?

Psychosomatic.  There I said the word.  Did you cringe?  I would think most young adult cancer survivors might.  Many of us had delayed diagnoses because our doctors thought we were hypochondriacs, too young for cancer, and it was all in our heads.

Take for example Mary Ann Harvard, who is the fantastic It Girl in my book.  Her docs told her that her fatigue and difficulties breathing were all in her head.  They even gave her a referral to a psychiatrist.  I bet they felt like big assholes when it was finally discovered that she had a tumor in her chest the size of a football.

But, over the past few years I have begun to explore the notion that some of  my fatigue and aches and pains are sometimes caused by stress and worry.  This seems like a Pandora’s box to open as an advocate who fights hard for our medical needs to be taken seriously, but here I go.

I don’t think that my fatigue and pains are always in my head.  But I do think that stress hormones can do a number on my body.  I have begun to notice my stress level and a correlation between how I feel physically.  At first I wanted to deny the connection because I felt it discounted my experience as a cancer survivor.  But it actually helps to notice when my stress is impacting my health and modify my behavior.  I don’t chalk up all of my pains and fatigue to stress, but I am training myself to recognize the difference between stress and a separate physiological illness response.

Does the word hypochondria make you cringe?  Were you ever accused of being a hypochondriac prior to your diagnosis when your symptoms were arising?  Do you ever notice a link between how your feel mentally and how you feel physically?  What do you do about it?

I went to high school with a guy named Ram Gordon who is now a cardiologist. He has a great post today on the New York Times site in which he reminisces about watching ER with his roommates as a med student 15 years ago.

His post made me remember when as a kid and my whole family sat glued to St. Elsewhere on Wednesday nights, watching Mrs. Huffnagle’s death by hospital bed. Oh, Ed Bagley Jr. before his eco-trip. Oh, hot Denzel in his youth.

But I’m now jealous (only slightly) of my friends who have had a great Thursday night escape with what seemed like one of the few quality TV shows on air. Since my cancer diagnosis, I’ve tried watching ER many times, but couldn’t stomach the palpable reality of the hospital. It was as if I could smell the rubbing alcohol wafting off the screen. Great TV to one is post-traumatic stress to another.

Last month I rented Synecdoche.  I liked Charlie Kauffman’s other twisted and addictive movies, Eternal Sunshine of the Spotless Mind, Adaptation, and Being John Malkovich. But when Kauffman’s wacky brilliance mingled with the plot a theater director suffering from strange symptoms that shut down his autonomic body functions, it flashed me back to my life as a 27 year-old choreographer, when docs spent a year and a half trying to figure out what was wrong with my body before I received my cancer diagnosis.  Those were the days when I’d fall asleep in the morning on my cold bathroom floor after brushing my teeth because I couldn’t make it back to my bed. I turned Synecdoche off after 45 minutes.

Are you able to watch movies and TV shows about hospitals and disease?  If so, what are your favorites and why?  Are med shows and flicks comforting in their familiarity or do they hit too close to home?   Has illness or being a cancer survivor made you squeamish or desensitized?