Everything Changes

I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

Do you have an angelic boss who has made accommodations for your illness?  Or, have you been wedged out of your workplace, or cornered into a position where your job is so miserable you want to quit?

ABC News interviewed me today about asking for sick leave and keeping your job. I offered them lots of tips and advice, but they don’t work unless you follow them.  (Duh.)

Lots of us are pals with our co-workers, bosses, and employers.  Some workplaces can feel like home, family, and the center of our social lives.  Sometime patients assume they don’t need to follow the rules because our bosses are supportive people who care about us.  It’s easy vent to them about our medical woes, lean on co-workers for emotional support, and assume our boss will do everything in their power to accommodate our illness.  Some will. And some want to but cannot.

Illness costs employers money.  No matter how kind your company may be, sometimes it’s hard for them to afford the hike in health insurance rates caused by your illness.  Your sick leave might slow a project down costing them more money.  Or maybe they have to spend extra work hours finding and training your replacement.

I’ve met plenty young adults who are shocked when their chummy employer isn’t able to make friendly accommodations or even lets them go.  That’s why I think it is important to avoid sloppy workplace boundaries.  No matter how friendly the environment, I think it’s always best to play by the rules: Be formal, friendly, honest, prepared, concise and orderly about discussing your illness in the workplace.

Were you nervous about disclosing your illness to an employer? How has your employer responded to your illness? Is it consistent with how they treated  you prior to your illness?  Any surprises along the way from supervisors or co-workers?

Read more about tips for navigating workplace issues in 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.

I often hear that people live more fully 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.

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.

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.