Everything Changes - The Guide to Young Adult Cancer

One of the greatest parts of writing my book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, was having complete strangers talk to me about the intimate details of their sex life. Here’s Mary Ann, from Chapter 9 ‘It Girl’:

“From my head to toes, I have been affected by cancer. Every part of my body has changed. I don’t feel sexy or female. I feel mutilated. I feel different, like an it. Feeling attractive goes into and is combined with feeling sexy, which might put you in the mood. Usually, I don’t feel like I’m in that mood. When you have been married for nine months, people think you are making love every night. I feel like we should be engaged in it all the time, and we are not.”

As young adult cancer survivors, we’re on hormonal roller coasters, missing body parts, wrestling with anxiety, reacting to medications, treatments, and transplants, and managing our ever fluctuating self image. These are not the easiest ingredients for a smooth sex life and it’s time we started talking about it and figuring out how to make sex work better for us.

Tonight, Monday, June 8th, 9 PM, EST is the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We’ll have two sexperts - Sage Bolte and Sueann Marks, on air focusing for an entire hour on cancer and sex. We’ll also be giving away to listeners three free copies of The Guide To Getting It On.

If you have any questions you want asked on air about sex and cancer, it is not too late to leave them in the comment section of this blog post (remember, they can be anonymous). And thanks to you who have already sent me your juicy questions!

What have you always wanted to ask about sex and cancer? Have you ever talked to a sex therapist before?  Have you ever brought up sexual issues with your docs?  How did they respond?  Were they educated, informed, embarrassed?

Many survivors my book marked the end of treatment with a trip. Some expensive, most on a shoe-string. Some foreign, others just a refreshing get away to see family or friends. If your thinking of adventure travel, Defy Adventures, a new adventure travel organization for young adult cancer patients. I recently interviewed Micheal Lepage, the founder.

Did you travel prior to having cancer?
No. Beating cancer spurred me to see the world. I have since backpacked Europe, trekked dormant volcanoes in New Zealand, camped in the Grand Canyon, and climbed to the top of the Cristo in Rio, where I asked my wife to marry me.

What were you hardest and most hopeful memories of treatment?
I’d just finished my 12 chemo treatments. Excited to return to school, finish my last semester and graduate, I dragged my parents, siblings, and girlfriend to my appointment. The news was the exact opposite of what I expected; I hadn’t responded well and I needed another four treatments. I felt crushed, embarrassed, and annihilated.  My most hopeful memory was a moment of clarity while sitting quietly in nature. I had one more treatment to go and felt sure that my cancer was gone and it was over. My next scan was blank and I was right.

What advice do you have for survivors after treatment?
Take it ridiculously slow. Here’s my formula; Take the total months of cancer treatments, divide it in half, and add 3 months. Plan for that much time to get back on your feet. If you get there sooner, great! But don’t push for it.

Talk about your new organization Defy Adventures.
We help young adult survivors reclaim their lives after cancer. We whisk them off to a remote part of the world to climb a serious mountain in Peru or survive in the jungle. Our expeditions create community, build self-confidence, inspire, and are a total blast.

So, have you taken any memorable trips after your cancer care? Were did you go? Did you get the O.K. from your doc before you traveled? Any tips for survivors wanting an inexpensive vacation? After treatment my friend Lisa Friedman and I went on a shoe-string trip to Costa Rica where we stayed in little beach villages with almost no tourists.

My surgery was on Halloween.  I wore a tiara and red heels to the hospital.  That’s easy to remember.  Ask me the date or year of my diagnosis and I have no idea.  Cancer has fried my inner calendar.

Daily on Planet Cancer and Facebook I see young adult cancer patients celebrating their cancerversary. My cancerversary doesn’t mean much to me.  Maybe it’s because I’ve never been cancer free so there is no end with which to book mark the beginning? Nah, I think  I’m just more focused on the day to day than the milestones.

Yesterday, I wondered how long ago I started this blog.  I looked it up.  June 3rd.  Exactly one year.  So, I want to dedicate this post (can you say Delilah?) to my fantastic friend Lisa Friedman.  She hounded me for about two years to start a blog.  I was totally resistant.  What would I have to blog about everyday?  I found her nagging irritating and she probably found my excuses pathetic.

Well, Lisa, a year later I’m addicted to blogging and I thank you.   I have more to blog about than my time allows: I’m finishing posts and series on medical debt, cancer and parenting, patient bills of rights, and  the taboo topic of cancer and domestic violence.

Thanks to all of you readers for your brazen comments and sharing your vulnerable experiences.  Without you this would be a one sided conversation and instead it is so much more.  Happy blogoversary to us all.

Do you celebrate your cancerversary?  What would you like to see me blog about during year number two?

Wedding season has officially started, so I’ll tell you a little tale about my own wedding.

Shannon and I were slated to get married in an old factory in Pittsburgh. (We love urban decay and grunge.) On a site visit three days before our wedding we discovered more grunge than we bargained for. Water was raining out of the ceiling, and serious mold infestation had set in – our guests would need hazmat suits just to step foot in the building.

Our response? “Oh, this is fixable.” We made a list of alternate spaces (a cool yoga studio in an old school house, a fire hall, an installation art museum), called around town, and found a great solution within 24 hours. Stressful? Yes. Earth shattering? Far from it. We were calm and cool. My mom and her friend were amazed that I didn’t cry or transform into a ready for cable TV bridezilla creature.

I didn’t consciously say to myself: ‘My cancer is not curable, but a ruined wedding location is.’ Yet, I know that this perspective played a large part in my no big deal attitude. I am way too neurotic to think that cancer has chilled me out; I still sweat small stuff. But having cancer as a young adult has taught me well how to be calm during crisis.

Have you had any major moments when you been able to brush off a seemingly stressful situation because it pales in comparison to the stress of illness? Do you find yourself saying more often “This is no big deal” or “I can handle this”?