Everything Changes - The Guide to Young Adult Cancer

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.

I keep waking up at 4:48 AM.  Sometimes a few minutes earlier or later.  I hate it.  But I know I’m not alone.  I’ve talked with a handful of breast cancer bloggers this week and discovered we all use blogging as a great way to deal with being awake at night.

Sometimes I can clearly identify what is keeping me awake: a doctor’s appointment or test on the horizon.  Sometimes even good events:  my excitement a few weeks ago about being interviewed as a young cancer patient on Fresh Air with Terry Gross (she is my #1 role model/heroine.)  But, often I’m just up for reasons I can’t figure out and I don’t particularly feel like scavenging the back of my mind to find the answer.

When I’m up, I get out of bed, go to my laptop, and work.  Lately it’s the only thing that distracts me – even when I lay in bed reading, my anxious thoughts take over the words on the page.  But, there must be a more peaceful middle ground in the hush of my night between tossing and turning and slamming into work mode.

People with weakened immune systems seem to need sleep the most, but the very nature of us being sick is often what grates on our minds keeping us awake.  A recently published article in the Archives of Internal Medical shows that people getting fewer than seven hours of less have less resistance to cold viruses than people getting eight hours or more. 

One thing that I know helps me is I never describe my being awake as insomnia.  (Though I can see how for people with a serious sleep disorder it is a useful term that helps you get appropriate treatment.)

Do you ever have a hard time sleeping?  Is it better or worse at certain times?  What do you do when you are awake at night?  How does it affect your life?

Read Everything Chanages: The Insider’s Guide to Cancer in Your 20s and 30s to learn about the about profound thoughts that other young adult cancer patients have when they are up at night.

I’ve been really into reading young adult fiction lately – less taxing on my brain after a long day of writing.  I love recalling the mindset of my middle and early high school years when everything around me was either cool or completely embarrassing.  It was a pretty narrow focus, one that cracked and splintered when anything more complex (like a family member’s cancer) arrived on the scene.

When tough times were going on around me, I saw straight though adults chumming up to me with pop-psychology, didactic books, and sentimental moments. All they elicited were eye rolls and a contemptuous desire to run out of the room screaming.  I could handle “learning moments” in the form of an After School Special, but that was about it.

That’s why I adore and highly recommend a slender new book Brushing Mom’s Hair, by Andrea Cheng.  A book of 52 short poem/vignettes about a 14-year-old whose mom has cancer,  there’s no room for the sappy crap adults want kids to learn and feel.  It reads like it was written by a 14-year-old.  She makes computer graphs charting her mom’s fluid intake, is stubborn, bratty, and sweet, obsessed with ballet, first kisses, and her weight.  Supposedly for teens, I think it’s a better match for middle school girls.  (I wasn’t reading Sweet Valley High in high school; I cared most about the insights of teenagers when I was in middle school.)

Nieces, nephews, students you are teaching, your own children, younger siblings.  Lots of young adult cancer patients talk to me about how kids in their lives respond to their cancer. How have kids in your life responded to your cancer?  Eye rolling?  Openness? Any tips for what works, what doesn’t when dealing with cancer and kids?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy’s dos and don’ts for living with breast cancer and parenting a 13-year-old son.

P.S. When I was a sophmore at Columbia University, I baby sat for Francine Pascal’s kids… Guess what - Fancine was actually a 30-something guy!

When I lived in San Francisco, nobody batted an eyelash at dropping into casual conversation mention of a trip to their therapist.  “Oh, I had a really great breakthrough at my therapy session yesterday” was on conversational par with telling someone “I tried a fantastic new recipe for kale smoothies.”

But San Francisco is not the rest of the country.  (In fact when I moved to Chicago, I realized that San Francisco is sort of its own country.)  Out here in the rest of the world, therapy is often seen as a luxury item or something that crazy people do.  There can be a lot of resistance, embarrassment, and silence about seeing a therapist.  So where is the middle ground for chronically ill patients who are struggling with the stress of their disease and need some help?

I am dedicating this post to a young adult cancer patient who I have become extremely close with over the past three years.  She has been through the wringer with cancer and endless chemotherapy.  She is in a funk and it’s totally understandable.  25% of all cancer patients suffer from depression, and the rate is even higher for young adults. But, my friend lives in the deep south where nobody talks about seeing a therapist. In our last conversation, I got the sense that the idea of going to therapy made her feel like a freak.  Her oncologist has suggested it many times; I thought it might sit better if she heard the experiences of other patients who are trying to manage their own emotional ups and downs with cancer and chronic illnesses.

Give her your therapy 101: Have you ever seen a therapist because of depression, stress, or anxiety related to your illness?  What did you talk about?  Was it useful or not?   How is it different than talking to a friend or your partner?  What other ways have you coped with depression?

To learn more about illness and emotional support, read about Tracy in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Grass is always greener on the married side of the cancer fence.  Or is it?  Here’s a quote from Katie Smith, who I interviewed while researching Everything Changes:

“I learned about my diagnosis in the recovery room after waking up from an operation and learning they had done a hysterectomy.  The first thing I thought was ‘What is my husband going to think of me now?,’ because we had been trying to get pregnant.

“I started seeing differences in how he acted with me.  We weren’t getting along.  We still wanted kids and he really wanted surrogacy.  It was hard for me to think about our kid being half him and half from another woman.  I wanted to adopt so it would feel equal. We talked a lot about it.  I signed up for an adoption class but he never showed up to class.  I was so mad sitting there by myself.  That was a big sign to me that he wasn’t that interested. Our marriage broke up two months later.”

I hear so many stories about the single cancer patient who finally falls in love (yep, I’m one of them too.)  But what about people for whom cancer crumbles a relationship?  Did you know that the divorce rate for terminal cancer patients is higher than the national average?

I know from experience that being single with cancer can suck, but I think that having cancer in an unloving or unstable relationship must be equally if not more challenging.  A lot of relationships that are already on the rocks sometimes just cannot sustain the emotional, financial, sexual, and fertility stress of cancer.

Some studies show that older couples often weather the marital stresses of cancer better, and that young couples are more likely to divorce in cancer situations than older couples.  Why?  When you’ve been with someone for decades you learn how they respond to stress.  Many older couples have already had kids.  They also have different expectations about what needs to happen when you jump in the sack.  Not always so for us young ones.

I’m curious to know, has illness made an impact on your relationships?  Has it taught you something about your partner you didn’t already know?  If your relationship ended during illness, was there any sense of relief that came along with the stress or sadness?

Learn more about cancer marriage and divorce from HollyAnna, Tracy, and Sheila in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.
11/11/09 - I wanted to give a quick update to this post.  A study just out shows that a woman is six times more likely to be separated or divorced soon after her cancer diagnosis than if the man in the relationship is the patient.  Wow.  The rate when the woman was the patient was 20.8 percent compared to 2.9 percent when the man was the patient. It also shows that the longer the marriage, the less chance of divorce after a diagnosis.

The study, “Gender Disparity in the Rate of Partner Abandonment in Patients with Serious Medical Illness,” was published in the Nov. 15 issue of the journal Cancer. The other corresponding author is Michael Glanz, M.D., of the Huntsman Cancer Institute at the University of Utah School of Medicine.

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 spent my first month of cancer trying to weasel my way onto COBRA. (Check out the podcast from my interview on yesterday’s Fresh Air with Terry Gross, where I talk about this and other young adult cancer issues.) One of my tactics was pulling the cancer card with COBRA phone representatives: “I’m 27, I have cancer and no insurance, pity me.” It was life or death and I was shameless.

Pulling the cancer card so early on in my diagnosis initiated me into the world of asking for help from others. And I got pretty good at it. But, most other patients I interviewed in Everything Changes told me that asking for help crushed their pride and amplified their lack of independence. Listening to these other patients, I started feeling guilty over not feeling shameful about asking for help.  Had I spent my whole life as a louse in disguise? Was cancer the ultimate chance for me to be waited on while I ate bon-bons?

Hardly. When I was diagnosed I lived in an isolated studio apartment in a rough neighborhood with no amenities. My laundry was down three steep flights of stairs in a garage that looked like a crime scene from Law and Order. There were no quick trips to the grocery store, no roommates, partner, or next door neighbor asking to pick up prescriptions for me. The only way I could get my needs met was by asking people to go out of their way to help me. There was a familiarity to it all: I had spent my childhood watching my grandmothers shuttle chicken soup across town to whoever was in need.

My second radiation treatment was the height of my helplessness. I was so weak I asked a guy friend to walk me to the bathroom. He had to prop me up on the toilet as I peed. While my extreme illness sucked, there was a small benefit to being humbled in this way: it reminded me that I’m human and I cannot make it alone.

What is it like for you to ask for help from others? Have you ever refused to ask when you really needed it? How do you handle it when people cop out, say no, or don’t show?

For practical resources on how to build and manage a your support system, check out 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 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.

Rick Gribenas is an artist and lymphoma patient quoted throughout my book Everything Changes. I’ve become friends with his wife Charissa since Rick’s death this past spring.  In addition to starting an organization, BRICKS, she’s been writing about her real time experience as a young adult widow.  Her first guest post was “How To Be A Widow on Myspace”, here’s more from Charissa:

“‘There are no rules for this,’ a very wise friend told me. And by ‘this’ she meant my mourning. She’s not a widow herself, but a level headed, tough-as-nails lady who knows a little bit about a thing or two. She’s the one who hopped in her car minutes after my frantic text message alerting her to the passing of my husband, and drove from Philadelphia to Pittsburgh so I wouldn’t have to spend those first few days alone. Of all the things people said to me over those awful, confusing days, this is the thing I have kept with me.

“I worried about my decisions, about facing each new challenge and how
I would deal with my own, chaotic emotions. There are no rules for this. No matter what, every decision I made was the right one, it had to be. I would know it was the right one. Whatever I felt in my gut was the thing to do, was. This was no time for second guessing myself, or doubting the validity of my feelings.

“Anticipating events and how I would handle them worried me over the following months. March turned into April, and suddenly my husband’s birthday was in front of me. I invited friends, I bought a case of his favorite beer and a cake he certainly would have approved of. We ate and drank and laughed and cried and it was everything it needed to be. The days got warmer and July was here, and I anxiously counted down the days to our 2nd wedding anniversary. I spent that night alone, in the foreign quiet of our house, feeling strangely at ease about the
whole thing. I realized that we celebrated every day, grateful for what we had found in each other, and the marker of the day we announced it to the world didn’t feel as heavy as I had anticipated.

“Some days surprise me with nearly unbearable misery, and others that I expect to be unbearable bring a peaceful calm. Either way, I fall asleep (eventually) and wake up to a new day. I get through it, and keep going. I take it one day at a time, and do whatever feels right for getting through it. After all, there are no rules for this.”

I’m curious to know how the rest of you cope when life is  hard and there are no rules. Is it comforting and easier knowing that it is up to you to forge your own path, or is it more challening to have no guide or reference point?