Everything Changes - The Guide to Young Adult Cancer

It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty - so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read 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 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.

Here’s a great question I got from a reader living with lupus:

Dear Kairol,
A number of people are giving me well meaning but downright useless and unsolicited advice about my illness and how I should handle it - diet suggestions, names of new doctors, and how to manage my illness in the workplace.    It upsets me to the point that I’m sometimes in tears afterwards.   They are trying to help but not with what I need the most: grocery shopping, cooking or sheltering me from their germs.  How do I handle this?
Anon Me Again.

Dear Anon Me Again,
When we’re sick people feel helpless and they grasp at advice to try and make us feel better. Here are some ways to respond:

Heart to heart. If it’s coming from a valued friend, have a heart to heart talk.  Use good therapy talk like “I” statements to describe how you feel, and remind them how much you value their friendship.  Tell them how hard your disease is physically and emotionally, how personal your healthcare choices are, and how their advice makes you feel.  They may not know their comments have made you cry and if they love you, they’ll care.   Talk about the specific kinds of help you really need and how much their help would mean to you.

Elevator lines. If it’s coming from an acquaintance in casual conversation, prepare a practiced response that you say in a positive tone of voice, and then redirect the conversation to another topic. Such as: “Oh, wait – I know what you are going to say, but I actually have a great diet that works well for me.  Thanks for the idea, but I’m really cool in that department.”  Or, “Wait, I know you have some good advice for me, but I am on information overload about my disease, and I need to take an official break from thinking it.  But thanks anyway.” The more you do this the easier it becomes, and it’s very empowering.

The drama reduction program. I write about the DRP in my book Everything Changes and how great it was to rid my life of dramatic people.  Who are the people dishing out this advice?  Are they pushy, dramatic, tiresome, or bothersome in general?  If so, limit your contact or give them the axe.  Sound harsh?  As a young adult cancer patient, I only have so much energy to go around. I’m picky about who I give it to.

What is the most irritating unsolicited advice you have been given?  How do you handle situations like these?  Are you ever guilty of doing the same to others?  (Hard as I try, I know I am from time to time.)

For more details about my utterly liberating Drama Reduction Program, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.