Everything Changes - The Guide to Young Adult Cancer

With 300+ posts on my blog about cancer and young adults, it can be hard to know exactly where to start.  I’ve compiled a list of the top ten posts that continue to get thousands of hits.

Top-Ten Posts

1. Your 5 Must-Have Items from Surgery & Treatment Time?

2. Do You Like Being Called Strong?

3. How Do You Prevent Errors in Your Care?

4. Smart Responses to Stupid Comments?

5. How to Ask For Your Medical Bill to be Reduced?

6. Your Best Advice To A Newly Diagnosed Patient?

7. Power of Positive Thinking vs. Realistic Thinking?

8. Did Cancer Impact Your Finances?

9. Scared of Every Little Ache and Pain?

10. Have You Ever Seen A Therapist?

Special searches.
If you are looking for a specific topic, scroll down the right side of this page, click on ‘Hot Topics’, or use the ‘Search’ box just above that to enter keywords about issues that are on your mind.

If you have been reading and commenting over the years, thanks to contributing to the popularity of the blog.  If you are new, welcome aboard.

Over and out,

Kairol

One of the coolest feelings is getting emails from patients who say, “I saw you speak, or I read your book, and you totally convinced me to get super aggressive with my doctor, or hospital, or employer, and it worked!”

Managing my own illness has at times felt lonely and defeating.  When I’m crying on the phone with a receptionist trying to get a sooner appointment, or flat like a butterfly pinned down to an exam table, it’s easy to feel at the mercy of the system.  That’s why it’s incredibly important for me to hear and tell success stories about being a pro-active patient. Here’s one:

Six hospital personnel were hovering over a table looking down at my neck: pathologists, radiologists, nurses, and fellows.  They were preparing to do multiple ultrasound guided needle biopsies of deep nodes. Before they began, I sat up and said: “Before you start with the needles, could you first ultrasound my neck and compare it with the images from my previous ultrasound? If the nodes have shrunk significantly is it possible this is not cancer but swollen glands instead?”

They agreed with my suggestion, performed the ultrasound, made a comparison, and conference called my doctors.  The nodes had shrunk considerably and did not merit biopsies. By speaking up, I avoided the pain of the procedure, anxiety of waiting for results, and saved my insurance company thousands of dollars.

I’m not a magician.  I cannot pull insurance out of a hat or make my tumors vanish. But I can catch record keeping errors, reduce my risk of infection by asking my docs to wash their hands, and speak up when I’m having logical thoughts about my health that don’t jive with the care I’m getting.  Forget the power of positive thinking.  I’m about the power of positive, smart, and aggressive action.

Tell me your success stories - even simple ones - about being a proactive patient so other reader can be inspired to use your tricks. What helped you get an appointment, obtain medical records, change your course of treatment, gain approval from an insurance company, or make your care more efficient?

Learn more savvy patient tricks in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.

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.

A great part of being an author and blogger is all of the emails I get from readers who I never would have met otherwise.  Rich Devlin is one of those people.

Rich sent me a riveting poem a few weeks ago called The Price of Survivorship, which you can read below. He recently lost his wife of 38 years to breast cancer, and lost both of his parents to cancer too.  He has two young daughters for whom he is “scared to death.”  I’m curious to hear your response to his poem.

Have you ever written poetry during your or someone else’s illness?  Do you have any favorite poetry or poets that you read to get you through the rough times?  If you have any favorite poems, written by you or another poet, please leave them in the comment section for me and others to read.  Come on Luke, I know YOU do!

The Price of Survivorship

Slides
d i s s o l v e
one
after
another
headless, legless torsos
prophylactic
r e c o n s t r u c t i o n
before & after surgery
latest techniques unveiled (proudly)
with clinical precision (emotionless)
silicon or saline (choice)
risk of rupture (real)
possible asymmetrical results (very fine print)
abdominal incision (aka. “tummy tuck”)
Tattooed areolas (optional)
Synthetic nipples (possible)
necrosis (occasionally)
mounds
of
molded
flesh
devoid of feeling.

“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer - a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.

I wanted Molly Ringwald’s pout and strawberry hair in eight grade. But I wanted even more the epiphany moments she lived out as John Hughes’ characters. Whether a wallflower or a princess, by the end of every movie we got to see who Samantha, Claire and Andie were, not who everyone else thought they should be.

Around the time I was in high school, watching Some Kinda Wonderful on VHS while making out with my best guy friend, cancer cells were growing in my neck. They weren’t detectable or diagnosed until I was 27. I’m now 36 and still living with cancer.

Over the past five years, I’ve been researching, writing, and had published my book on Gen X and Gen Y cancer. While hammering out my manuscript, I hung above my desk a quote that Anthony Michael Hall wrote in a letter to Mr. Vernon in the closing scene of the Breakfast Club. “You see us as you want to see us, in the simplest terms, in the most convenient definitions.”

That’s how I feel every time I see cancer patients in a movie, on the news, or plastered on a poster. Victorious cancer jocks, mountain climbers, and movie stars help raise money and awareness. But these survivorship images also create a stereotype of young adult cancer patients. We are seen as vocal, outspoken, sassy, sexy, insightful, spiritual, grateful, and empowered.

As a patient, I wanted to be freed of these limiting descriptors and perceptions. I wanted to lock up myself and a few other cancer patients in a metaphoric library for Saturday detention and get to the bottom of it all. As I wrote in my book, “I wanted to reveal who we are, not in simple definitions but in the complexities of our real daily lives: what we think about while lying in bed at night; what we wish we could tell our lovers but are too afraid to; the ways in which we feel vulnerable, tender, and utterly uncertain what to do with ourselves; the times when cancer is not a fight but just a hard circumstance with which to live.”

I never got to be Molly in eight grade. But I kinda get to be her now in moments that are akin to the cheesiness of Samantha kissing Jake or Clair kissing Judd Nelson. This is how I feel every time I sit down and talk to a cancer patient who is fat, a junkie, suicidal, addicted to exercise, scared to go back to work, hasn’t had sex in five years, or is confused about their faith in God. These images are also not all of who we are, but I consider it a glory moment when the underdog sides of our cancer selves get the spotlight for a few minutes, or a few phone conversations, or a few chapter of a book. Cue the Thompson Twins. Thanks for the inspiration John.

Have you ever felt like there is a stereotype for what a cancer survivor should look or sound like? An expectation of what strength or fighting should look like? Were you ever obsessed with John Hughes movies?  Which was your favorite?

For more moments from the metaphoric cancer detention library, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“What’s the right way to thank friends for their help and to show my appreciation?,” asked Garnet, a survivor, in the comment section of my last post (Cancer and Friendship). Her question evoked the words of Richard Acker, a 36-year old stage 4 colon cancer patient in my book.

“When we receive help, it is clearly benefiting us, but it also gives some benefit to those who are helping us. They feel good, it makes them happy, it helps them to express their love for us in a concrete way.”

I agree and believe that when you receive help while you are ill, you don’t have to do anything other than say, “Thank you.”  I haven’t always followed this rule though.  Especially after treatment, when I made big thank you gestures - mostly in the form of dinner parties where I unleash my inner Barefoot Contessa.  My desire to thank came not only from my genuine gratitude, but also a bit from the guilt of feeling like I was an imposition, and a tad bit from shame that I needed help to being with.   Thank you gestures made the help I received into something reciprocal, which made me feel less like a sick cancer patient.

But I’ve come to think of that attitude and the need to do something thankful as bullshit.  Why?  Because I AM a young adult cancer patient and I WAS sick. This is not an equal, reciprocal exchange.  When we are down and out we need help.  When I graciously accept assistance without reciprocating, I am humbled and reminded of how helpless I am sometimes.  This is not a bad thing.  In my eyes, this is part of getting real with what it means to live with cancer.

When I do something for someone else in need I don’t do it because it makes me feel good or because I want something in return.  I do it because I love someone or care about helping to alleviate suffering in the world (that sounds kind highfalutin but it is true.)  When someone helps me, I hope this is also their motive.  Now, when I’m sick and need help, I simply show my gratitude by saying “Thank you,” it feels really right.

What is it like for you to accept help?  Do you ever feel guilty doing it?  Do you feel like you have to give back and do something?  Does it make you feel weak to accept help or does it empower you to recognize your limitations?  Have you ever done something for friends and family to thank them for helping you during an illness?