Everything Changes - The Guide to Young Adult Cancer

If a guy I was sexually active with were missing a ball it would take me a while to figure it out.  Seriously.  For me, they’re not the main attraction down there nor do they have a gigantic space in between like breasts, which allow you to focus so specifically on the left or right. If both balls were missing it would be much more apparent.  I’ve never been in this situation, so I can only speculate, but I don’t think it would change my sex life much if my guy were missing one or both balls.  Sure, I’d have to get used to their absence, but it wouldn’t change my level of attraction or satisfaction if they were missing.  (Apologies in advance to my husband for whom this might be a weird post to read!)

I got a great comment from a testicular cancer patient on my post about missing body parts: “I couldn’t get a prosthesis at the time I lost righty so I proceeded to live the ensuing twelve years without. Dating was difficult and awkward, not because partners might be scared off but because I feared they would be. Any man will tell you that anxiety and fear are huge mood-killers where sex is concerned.”

When I hear guys talk about their anxieties about being ball-less I want to tell them ‘My life would be fine without balls. Really!’   But the guy who commented raises a good point that even if the partner didn’t care, he still had anxiety about it.  Cancer and body images issues go a lot deeper than what other people think of our bodies.  It’s how we think about ourselves that matters as much if not more.

Maybe I’m easy going on the missing body parts issue because I have empathy for fellow cancer patients.  However, I don’t think that’s the case with balls.  I wanted to do some research to find out if I as a sexual  partner I’m alone in my thinking of ‘balls, take’em or leave’em.’  But, I couldn’t find the right combination of keywords to google that would yield good results rather than immature dialogue or raunchy sites. So I’d love to have an honest conversation about balls on my site instead:

If you are a straight gal or gay guy, how would you react to a partner missing one or both balls?  Would it change your sexual experience?  If you’re a testicular cancer patient, has it changed your body image and/or sex life to have one or both testicles removed? Remember you can comment anonymously.

Brian Lobel is a witty and super-intelligent testicular cancer survivor.  Read about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

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.

Everything Changes Book Party

August 6,  7 pm

House Party hosted by Alli Ward in Columbia, MD

For address please email me:  kairol at mac dot com

All are welcome at this  summer soiree house party where I’ll be signing books and talking about my favorite taboo cancer topics…

Hope you can make it!

One of the best parts of having my book out is the readers I get to meet and become friends with.  A few months ago I had a book party in Washington D.C. and met a great woman Alli Ward.

Alli is throwing a house party book bash for me this Thursday, August 6 at 7pm in Columbia, MD.  It will be a chance to meet face to face, sign books, and have conversation about living with young adult cancer and chronic illnesses.

If you are in the Washington D.C. / Baltimore area, I hope you can make it, if not, spread the word to others who are!  For street address please email me - kairol at mac dot com or leave a message below and I’ll send you all the info.

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 lived a deprived childhood.  I never was part of a science fair.  Seems like everyone else I know had science fairs… maybe my school was just too cheap.

I got a chance to make up for it last night as an author at a Chicago literary fair.  The challenge was to make science fair-like projects out of our book.  (Sweet PR change of pace from my usual writing articles and planning speeches.)

I took quotes from my book Everything Changes, and wrote them on little paper doors that you could life up and read about the cancer patient who said them.   For example:

“I’d ask my doctor a question, and he’d say, ‘We’ll cross that bridge when we come to it,’ and I’m like, ‘No, f*** you. This is my body, I’ll cross it right now.’”

Amilca Mouton Fuentes, 26, leukemia.  Lives in her parent’s house with her husband, 15 month old son, and her siblibings.  Seven adults and one bathroom.
Loves Krispy Kremes, and is devoted follower of Ama, an Indian spiritual leader.

“I believe that there are times when it is appropriate to receive help, just as there are times when it is appropriate to give help. If you ever refuse to receive, you are unnecessarily putting a barrier between yourself and the love of others. It’s normal for humans to live in communities where there is love and relationship, and receiving is just as important a part of being in that community as giving is.”

Richard Acker, 36, colon cancer.  Dad, husband, environmental lawyer.  Evangelical Christian dedicated to preserving God’s creations.

I had eight quotes in total that helped break stereotypes of cancer patients, and taught a bit about some of our attitudes and lives.  But I still feel like I ultimately failed in that I couldn’t come up with a connection between young adult cancer and an exploding baking soda and vinegar volcano.

If you had unlimited time and money to create an outlandish, over the top, large scale science fair project about your life as a young adult patient, and it were going to be show at a place like…let’s say ASCO, what would you make?

Read more about Amilca and Richard in Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

This Saturday in Boston, I am going to try to be verbal with a room full of folks at 8:30 AM. It could be dangerous, says my inner night owl.  I’ll be talking about the lessons I learned while traipsing across the United States interviewing young adult cancer survivors for my book Everything Changes.

I’m  keynoting a great young adult cancer conference called I’m Too Young For This. (A hauntingly familiar name, no?) There are still a few slots left for registration at youngcancerconference.org. The conference is free and is going to be a blast. Break out sessions will include juicy YA topics like singles and cancer, nutrition, mindfulness, caring for the caregiver.

If you cannot make it to the conference, but are around that evening, Matthew Zachary is arranging an i2y Boston Cancer Happy Hour. I don’t have the 411 at the moment to post the details, but if you are interested, shoot me an email: kairol[at]mac dot com and I’ll get you the info. ASAP.

Saturday | April 4, 2023
8:30 am - 3:00 pm
(breakfast & lunch provided)
The Conference Center of the Carl J. and Ruth Shapiro Cardiovascular Center at Brigham and Woman’s Hospital
75 Francis Street, Boston MA 02115

Register:
youngcancerconference.org

The Flat Line
Most of us were either not born, sporting pampers, or wearing size 6X bell bottoms and Holly Hobby dresses when Nixon declared war on cancer. Since then, five-year cancer survival rates for peds and older cancer patients have risen steadily. However, survival rates for young adult cancer patients have seen zero improvement.

One of the culprits is our lack of access to health insurance (see my young invincibles schpeil!) But, another huge factor is our lack of access to clinical trials. Clinical trials study new and promising cancer treatments, providing access to cutting edge medication well before they are released on the market. Ready for another shocking statistic? Sixty-percent of pediatric patients participate in clinical trials. Yes, 60%. Only 1-2% of twenty and thirty-something patients participate in clinical trials.

Only now is the first ever large-scale clinical trial being designed to study a particular cancer type in young adult patients. This means that all of the cancer drugs that are infused or beamed up into our 20 and 30-something cancer ridden bodies have only been studied on folks the age of our parents and grandparents. Why is this a big deal? Their bodies are drying up, they have no periods, different hormone levels, and are experiencing middle and end of life health changes.

Life Saving Juice
While researching my book Everything Changes, I ate up Dr. Archie Bleyer’s study on barriers to clinical trial participation for young adult cancer patients. It may sound dry and boring, but this is actually the juicy information that can help extend our lives.

Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about Young Adult Clinical Trials 101 with clinical trial experts Deborah Vollmer Dahlke and Ellen Coleman.

Have you ever participated in a clinical trial? What was that like? Have you wanted to participate in a clinical trial but it didn’t pan out for you? If so, what were the obstacles? What questions about clinical trials would you like me to ask our guests on the show tonight?