Everything Changes - The Guide to Young Adult Cancer

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.

Rick Gribenas is an artist and lymphoma patient quoted throughout my book Everything Changes. I’ve become friends with his wife Charissa since Rick’s death this past spring.  In addition to starting an organization, BRICKS, she’s been writing about her real time experience as a young adult widow.  Her first guest post was “How To Be A Widow on Myspace”, here’s more from Charissa:

“‘There are no rules for this,’ a very wise friend told me. And by ‘this’ she meant my mourning. She’s not a widow herself, but a level headed, tough-as-nails lady who knows a little bit about a thing or two. She’s the one who hopped in her car minutes after my frantic text message alerting her to the passing of my husband, and drove from Philadelphia to Pittsburgh so I wouldn’t have to spend those first few days alone. Of all the things people said to me over those awful, confusing days, this is the thing I have kept with me.

“I worried about my decisions, about facing each new challenge and how
I would deal with my own, chaotic emotions. There are no rules for this. No matter what, every decision I made was the right one, it had to be. I would know it was the right one. Whatever I felt in my gut was the thing to do, was. This was no time for second guessing myself, or doubting the validity of my feelings.

“Anticipating events and how I would handle them worried me over the following months. March turned into April, and suddenly my husband’s birthday was in front of me. I invited friends, I bought a case of his favorite beer and a cake he certainly would have approved of. We ate and drank and laughed and cried and it was everything it needed to be. The days got warmer and July was here, and I anxiously counted down the days to our 2nd wedding anniversary. I spent that night alone, in the foreign quiet of our house, feeling strangely at ease about the
whole thing. I realized that we celebrated every day, grateful for what we had found in each other, and the marker of the day we announced it to the world didn’t feel as heavy as I had anticipated.

“Some days surprise me with nearly unbearable misery, and others that I expect to be unbearable bring a peaceful calm. Either way, I fall asleep (eventually) and wake up to a new day. I get through it, and keep going. I take it one day at a time, and do whatever feels right for getting through it. After all, there are no rules for this.”

I’m curious to know how the rest of you cope when life is  hard and there are no rules. Is it comforting and easier knowing that it is up to you to forge your own path, or is it more challening to have no guide or reference point?

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.

“If I had a message to the men of the world who have rejected women with cancer it would be f*** you! No. You’re an idiot. No you’re just selfish. It’s so pathetic- do these men not think that they could get sick some day too? It is just bad karma.”

These words spouted from Melissa Sorenson’s mouth, to my tape recorder, to the pages of my book Everything Changes. I high-five her all the way. But it’s not just a message to men. Plenty of women have rejected guys with cancer too.

Diagnosed with rectal cancer at 41, James Buchanan writes about cancer and dating. Gas eruptions on a coffee date; a woman who was fine with cancer but not his colostomy bag; and finally Lesleigh, who was up for both. This is a great description of their first time in bed:

“We undressed and climbed into her bed, but cancer had one more ‘f*** you’ in store for me. Hidden beneath the pain of the radiation and surgery and the sickness of chemo was damage to the nerves necessary to achieve an erection. My body and mind wanted her frantically; my soul silently screamed in embarrassment and anguish.

As I would learn later, these difficulties were an on-again-off-again problem that could be cured with a pill when necessary. But for that night, I held her in quiet sorrow. I was convinced that my life would never be whole again, that this relationship was nothing more than a promising meal about to be taken away from a starving man.

‘I’m sorry,’ I said. ‘Is it me?,’ she asked. ‘No, not at all, never,’ I replied and then feebly described how my treatment had been so focused on this one area of my body that it was inevitable it would have obliterated the anatomy required to make love to her. Lesleigh rested quietly next me, naked, beautiful and sexy, and my newfound impotence burned hotter than anything I had ever felt in my life. Then she turned and kissed me. I wrapped my arms around her as she curled into my body and we lay together, naked and sad.

Lesleigh and I worked through my cancer and physical infirmities, and as we have progressed and fallen in love we have brought our kids together and established amongst all of this complexity a family based on a healthy and loving relationship. At no point have I doubted Lesleigh’s love for me nor my love for her.”

I love James’ story not just because he and Lesleigh got married in the end, but because it is such a good example of why great communication really matters.

I hear so many cancer dating horror stories. Do you have stories about people who are loving, accepting, communicative? What worked and didn’t work for you with cancer and dating?

Check out the sordid details of my dating life, including a very happy ending, in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I don’t have kids but got to peer in the lives of parents with cancer when I was doing interviews for my book Everything Changes. I believe that cancer is a totally different disease for people who are parents and think there should be a new staging system to reflect this monumental difference: Cancer Stages I - IV NK (no kids) and Stages I - IV P (parent).

Jen Singer is the creator of MommaSaid.net, the moderator of the Parenting with Cancer boards at Planet Cancer, and the author of four parenting books including Stop Second Guessing Yourself—The Toddler Years (HCI 2009).  I asked her to write a guest post about life during treatment as a mom of three.  Take it away Jen:

“When I found my son’s swim goggles in our mailbox, I took it as a sign that I was no longer in charge. How could I be? That summer, I was undergoing chemotherapy for stage 3 non Hodgkin’s lymphoma (and, oh yeah, my house was undergoing renovations…). So I didn’t have the energy to drive my kids to swim team practice. In fact, I missed most of their swim meets and much of June, which I spent in the hospital, sharing a room with an 84 year-old leukemia patient, who was dying. I missed being the kind of hands-on mom I’d always been. But most of all, I missed my kids.

I learned a lot of things that summer, like how to tie a headscarf and what time The Daily Show repeats come on during the day. But most of all, I learned how to let go. It was the best thing for me, and for my kids.

While some nice folks took it upon themselves to turn my mailbox into a Lost and Found, my neighbor, Susan, organized the community to cook for us three times a week. Another neighbor, Kim, set up a schedule for friends to carpool my kids to various activities and playdates, which she arranged for me. My job was simply to sit on the couch and wave good-bye – if I was even awake. Everything else was pretty much handled by everyone but me.

The sicker I felt, the easier it was to let friends and family take care of my kids. I’d much rather that my children spend the afternoon swimming with their buddies than watching me doze off or witnessing me drop to the floor in excruciating pain, a side effect of the white blood cell-boosting shots I received after each chemo session.

But when school started in the fall, not being in charge was harder for us all to take. I had to ask my husband to fill out the first-day paperwork, because I was simply too exhausted. I brought my mother and a teen from down the street to help me coach a soccer game, because the radiation treatments had weakened my voice. And when I went to Back-to-School night, several neighbors didn’t even recognize me and my puffy-from-steroids, eyelash-less face.

For the first school year ever, I wasn’t Jen Singer, class mom. I was Jen Singer, cancer patient. And that was hard on all of us, especially my kids.

But once my treatments ended and my energy (and my hair) began a glorious return, I started to pick up where I’d left off. By the time I found out I was in remission (and still am), I was slowly becoming the hands-on mom I used to be.

Now two years later, I am in charge of the kids – and the swim goggles – again. But I’ll never forget the generosity our neighbors extended to me the summer that I had cancer. I may have lost the ability to parent the way I wanted to, but I found something so much more important in the mailbox and beyond.”

When you were parenting with cancer, what was it like to let go of control of the day to day life of raising your kids?  If you are post-treatment, or in remission, do you feel like having had cancer has changed the way you parent?

For more stories, advice, and resources on parenting with cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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?

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”?

In my book, I write a lot about being single and jealous of what I called those “married cancer bitches.” I also talk about now being one of them. Cathy Bueti is the author of Breastless in the City, a breast cancer memoir that focuses almost exclusively on dating and love. It hits the shelves tomorrow, so I thought I’d ask her about what it is like to write a whole book about cancer, romance, and intimacy:

What was the most satisfying part of writing Breastless in the City? What was the hardest part? The most satisfying part was knowing the potential my story had to help others. The hardest part was digging up all the emotional stuff that had been hidden away for so long. In some ways it was like reopening old wounds.

If you could turn back the hands on the clock and had control over your fate, would you choose to get a cancer diagnosis? Probably not. However, I am grateful for having gone through it because of what it taught me about myself. It also lead me to my husband and to all of the great people I connected with through the experience.

Did you have body image issues after treatment and how did you deal with them? Hell Yeah! It was very tough to deal with it. A diagnosis of breast cancer especially affects your sexuality so directly. I had to connect more with myself on an inner level in an attempt to separate from the physical stuff so I could see that who I truly am was still present. I still struggle with that.

What adjectives do you use to describe yourself as a patient? Challenging, inquisitive, and unfortunately anxious!

What is your cancer motto? A quote from Emerson I used in my book, “What lies behind us, and what lies before us are tiny matters compared to what lies within us.”

So readers, if you were to write a cancer memoir, how much of your book would focus on aspects of love, dating, relationship, sex, and body image? Have you experienced what Cathy talks about with connecting on an inner level to separate yourself from the physical experience? (I actually did some what more of that before cancer and less since cancer.) What is your cancer motto or three adjectives you use to describe yourself as a cancer patient?

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?