July 09, 2009

When ‘How Are Your Doing?’ is Not a Simple Question

cocktail-party

Last night was Shannon’s office party.  (Fantastic blue cheese, good shrimp.)  One of his co-workers gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked.  “I’m great I replied.”  “No.  REALLY.  How are you feeeeeling?,” she asked.

Some people who know that I’m a young adult living with incurable cancer expect me to feel like crap or be in misery. And when I’m not I get the ‘you’re a heroic trooper’ comments, the puppy-dog-eyes look, or the ‘it’s okay, I get it, you can be honest with me’ statement of disbelief over my feelings of wellness.  It’s maddening.

If me feeling great isn’t good enough,I wish they ask: ‘Do you feel the physical impact of cancer on a daily basis?’  I love blunt and upfront communication, and think this is what they are trying to get at.  I would reply: ‘I can’t feel the tumors and I’m not on treatment. I’ve gotten used to the side effects from my meds.  The hardest part is often the mental trip of cancer, but I’m really doing great right now.’

That kind of sounds like a kick ass reply, huh?  Maybe it should just be my response when someone asks me the overly tender ‘How are you doing’ question.  Though I wish I could get away with “I’m great, how are you?” just like everybody else.

As much as these pitying interactions really piss me off, I see a flip side.  Today the New York Times has a section on the voices of lupus.  After listening to people talk about this rather mysterious and unknown disease,  I see I’m lucky to have a disease with good name recognition that others take seriously.  Prior to my cancer diagnosis, my doctors suspected lupus. If I were a lupus patient, I might look great, feel like crap, and nobody would even bother to recognize my disease or pain.

Do people ever ask you how you are feeeeeling in a way that is different from how they talk to someone who is not ill?  How do you respond?  Do you appreciate the recognition and attention, or do you wish they would approach you as they approach others?

Read more about illness and social interactions (both victorious and defeating) in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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July 07, 2009

Cancer and Pillow Talk: A Guy’s Perspective

black-bed

“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.

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July 05, 2009

Lost and Found: Mom with Cancer Learns to Let Go

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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.

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July 03, 2009

The Yelp for the Cancer World

blue-tony

One of my big cancer distractions as of late is spending hours on Yelp praising local businesses that I love. (Watch out, it is addictive).  Now there is a really cool cancer answer to yelping, better known as the 2009 Cancer Fighters Awards on GreatNonprofits.org

Here’s the deal. If you have volunteered, done fundraising, been a client at, or in some other fashion encountered a cancer organization, you can post reviews and stories on GreatNonprofits.org.  The nonprofits that get the most positive reviews during July will win the contest.  Which means tons of kudos and exposure for them.

In case that is not enough, individuals who post reviews of the winners will be eligible to win great prizes such as a free autographed copy of my book “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” Organic Valley Milk for a year, spa packages from Osmosis Day Spa and Kabuki Springs and Spa, baked goods from Dancing Deer Baking Co., and more.

I think this is an excellent idea, because it not only helps your favorite organization gain praise, but it helps them get feedback about what they are doing right, wrong, and what they could do differently.  I think it is super fun to brainstorm some of the questions the site asks – such as if this organization had 10 million bucks, what do you think they should do with it?  Log on to Greatnonprofits.org cancer campaign and let them know!

I’m curious to know too– what is your favorite cancer non-profit and if they had 10 million smakeroos what would you want them to do with it?

Check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for my fav-o-fav young adult cancer organizations.

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July 01, 2009

How I’m Coping With My Incurable Cancer

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Today’s post is longer than usual. I get great emails from people who have read my book Everything Changes. I thought I’d share this one with you and my response:

Dear Kairol,
You’re the only other person I’ve found with a tricky case of thyroid cancer with no cure. How did you deal with it? Having my cancer labeled as “recurrence” worked because then we could do something about it. But now it is seen more as incurable.  The constant monitoring and the knowledge that it’s lingering sucks. Lately I’m always thinking about it. Did you just accept it at some point? How long did it take? Blogging helps a bit to get the thoughts out of my head, but it’s sort of driving me nuts. Any suggestions, advice? – Robin

Dear Robin,
You’re in territory familiar to anyone living with chronic disease. It is very unusual for papillary thyroid cancer to be incurable, but here you and I are. I’m living with two tumors in my neck and am not receiving treatment (I’m refractory) and won’t have surgery unless they grow significantly. I’m doing this under close supervision of a top-notch doc at Memorial Sloan Kettering. This approach is a recent shift for me. Your question made me reflect on how I’m coping with incurability.  Hold tight, some of this seems nauseatingly Oprah-esque but just stick with me:

Acceptance and relief. My experience is opposite yours. Knowing that my cancer is incurable has dissipated my fear and anxiety somewhat, which is hilarious considering what a high-strung freak I can be. When we still thought there was a cure, I was hyper-stressed wondering “Will treatment work this time?” “Will my scans show me as cancer free?” It seems twisted, but in this world of being incurable, I find relief in not having to grapple with these unknowns and in not having to recover from the continual and exhausting disappointment of bad news. Of course I’d rather have good news, but I’ve rarely received good news in nine years of cancer and I’m sighing with relief at calling a spade a spade.

I now mark success not by the absence of cancer but by whether the tumors have grown or stayed the same (I want to include shrinking as an option but I feel too jinxed to do that.) This is a big change that I’m still adjusting to.  And yes, waiting for blood test and scan results still SUCKS but is getting ever so slightly easier with time.  Either that or my distractions are just getting better.

Expert Care. My new doc primarily sees patients with challenging cases. He has no pity, confusion, or odd curiosity about my case. He has seen tons of patients in my shoes and can tell me what to expect. This is tremendously reassuring.

Deep Distraction. I’m good at feeling my feelings, and at finding supreme distractions: a person can only take so much wondering if cancer has spread to other organs. My book Everything Changes hit the shelves while the reality of my chronic condition was unfolding. Keynote speaking, blogging, answering fan mail, and having book parties around the country are incredible distractions. (Anyone who wants to host a book party for me – just say the word!)  There is a fine balance between running from reality and plunging into a well deserved, therapeutic lifestyle of perfectly legal distractions.  Find that balance.

Simple Comparisons. 98% of the time comparing oneself to other cancer patients is a supremely bad idea and only leads to jealousy, guilt, or worse – forced gratitude. I have found a small exception. I live daily with the intimate stories of 25 people who are in my book.  Their cancers are faster growing than mine (most papillary is very slow growing) and my survival rate is still very good.  I may or may not have to deal with some more complicated medical hell in the future.  And that scares the crap out of me.  But I know I still have a good chance of living, and compared to these other patients I have come to adore, I’m down right grateful.   I do not make these comparisons to force myself to feel better – again, horrible idea – but the comparisons are just happening naturally for me and result in some deep appreciation for my struggle and theirs’.

Being Myself. Who I am changes because I’m growing up, adjusting to cancer, and seeing the world differently as life moves on. How I feel now about my cancer today will not last forever. What’s easy for me to digest now may become harder, and then will become easier again. That’s why I love the mantra Everything Changes. It is just true.  When I’m in an hideous headspace about my cancer, I don’t beat myself up about feeling like crap. I let it be and know that it will change. Relieving this pressure helps. Seeing a therapist can be helpful too, as can my current system of therapy: baking strawberry cobblers, talking out my fears with Shannon, renting espionage movies, and remembering that Everything Changes.

Does anyone else have advice for how to live with recurrences, incurable disease, or what to do with cancer fear in general? Have you made the shift from acute to chronic and how did you deal with it? If you have other questions for me, send them my way. I’d love to answer them.

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn  how Wafa’a, Geoff, Greg, and Holly Anna have dealt with illness over the long haul.

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June 29, 2009

Are You Annoying Your Doctors?

reducing-medical-bills

My healthcare motto as of late is quit bitching and start thinking.  Yes, the health care system sucks and we need to vent about it big time.  But, we also need to learn how the system and its players work so we can use them to our advantage.  We cannot do this if we think patients are never to blame.

In my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, I write a lot about how I and other young patients have wrangled the system, fought like hell, and got the care we needed. You can’t win these battles by only thinking like a patient; you sometimes have to think like a doctor.

Last week, Kevin MD posted about patients who annoy their doctors.  A commenter complained about cancer lit that suggests patients bring a friend or family member to appointments because it turns the appointment into “a side show.”  Instead of getting in a defensive-patient tizzy, brewing up an us patients vs. the rest of the world rivalry, I thought I’d try to see if there was value in the comment.

I want my doc to absorb my medical history, perform a good hands on exam, and answer my questions, all in 10 minutes. So maybe the maxim shouldn’t be ‘bring a friend to appointments’ but bring a friend who is medically astute and a skilled communicator. Is it really helpful to have a flighty chatterbox with me in my appointment, who will distract and annoy my doc?  I think not.

Tonight on the Stupid Cancer Show, Matthew Zachary and I will be interviewing Wendy Harpham MD, a mom of three and general practitioner diagnosed with cancer at 36.  Her great new book, 10 Seconds to Care: Help and Hope for Busy Clinicians, helped me better understand the pressure cooker in which my docs work and the ways in which I can actually make their jobs easier.  Considering that their job is to save my life, I’d like to help them all I can.

Are there times when empathizing with your docs works to your advantage?  Do you ever read doctor blogs?  Have you ever brought someone to an appointment who actually made the process more complicated rather than easier?

For more stories about how to be an effective, proactive patient, check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, available wherever books are sold.

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June 26, 2009

Cancer Weight Gain and Loss

body-size

My tiny little ass is getting fatter. And I wrote a comment about it today on a New York Times Well Blog post about cellulite:

“I have been stick thin for years from cancer treatments and only in the past few months have I seen cellulite on my body for the first time ever. It is kind of unattractive, but a vast improvement to looking like a victim from the camps. It might take some time to get used to, but I’m welcoming my cellulite.”

I don’t talk about my body much because in the world of women it is easy to be hated for being skinny – even scary skinny like me. I’ve always been svelte. My body was great for ballet, but freakish by other standards. ‘Toothpick legs’ was the name kids called me at summer camp. Not a confidence booster.

Before cancer I was a healthy 134 pounds. Since my hormone therapy I’m now 112 despite my efforts to gain weight. I feel like my bones are going to impale my partner, like I might be easily carried away in a storm. I catch people looking at me with tempered disgust. So yes, the ripples of fat that just showed up on my ass in the last few months are not attractive but are okay with me.

Some of you may be rolling your eyes by now thinking “whatever you skinny bitch.” I know that being underweight is a hell of a lot easier than being overweight in this culture. But my body is my body and I want to write about it.

It is weird to work so hard to keep this body alive and then to focus on something as seemingly shallow as looks. But how we look can often impact how we feel about ourselves, and that is something worth writing about.

Has your body changed shape or size from surgery, treatments, hormones, steroids, lack of activity? How have you adjusted to this change? Do you feel like other people notice or comment on your size? How often do you think about your appearance?

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June 24, 2009

Pre-existing Conditions & Your Career Path

California Prisons

I’ve had to live with jobs that were way off my career path just to pay my health insurance.  Heidi Adams, executive director of Planet Cancer, is going to be asking President Obama about this very issue on ABC Primetime tonight live at 10 PM EST.  The program is called “Questions for the President: Prescription for America” (Must see young adult cancer TV.  Go Heidi Go!)

During cancer treatment I lived on disability.  Afterwords I needed a job with health insurance.  In my book Everything Changes, I wrote about my day job working for a non-profit organization that helped ex-offenders. “I sat in church basements with rapists and murderers (a remarkably respectful and nice bunch of guys) teaching résumé writing and feeding them the organization’s line that if you work hard enough, you can achieve anything. These men and I knew this was bullshit, that life’s circumstances don’t necessarily comply with will or effort.”

The job had ups and downs.  The downs: My employer’s insurance agent called me nonstop asking when my cancer would be gone so their healthcare rates would go down.  I worked 40 hours a week, the pay was lousy, and I had no reserve energy to write or choreograph.  For the first time in my life I was utterly non-creative.  So much for living your dreams after cancer, right?

The ups: I had health insurance.  And, the men I taught were pretty cool.  After going through cancer it was great to be surrounded by people who were also struggling to adjust to “normal” life.  They made me feel like less of a freak.  We were good company for each other.  Is it pathetic that ex-cons made me feel normal?  I don’t think so.  We were all just people trying to cope with change.

How has cancer and the need for health coverage impacted your work life?  What jobs have you taken that you would not have otherwise?  What were the ups and downs?  Are you job searching now or returning to work and how are you handling it?

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June 22, 2009

How To Be a Widow on Myspace?

charissa

When I interviewed Rick Gribenas for my book Everything Changes, his honesty blew me away.  That same kind of honesty lives on in Charissa, his wife who is now widowed.  She is the founder of BRICKS for Young Adults. Yep, that’s her pic above.  I hope this is the first of many guest posts from her:

“I learned very recently that the term ‘widow’ is not an option on Myspace when selecting a ‘Status’. This really bothers me. I feel that the other options don’t apply to me. So, I need to reclaim the words ‘widow/widower’.

I think people are afraid of it/us. Sure, our new status is difficult and comes with a lot of work to do. That doesn’t mean we are some strange, mysterious creature not to be trusted or gotten close to. The word widow means I was a part of a loving, special relationship that ended not by choice but by circumstance.

To my friends I say, ‘Believe me.’ When I tell you I’m ok, I’m really not lying or covering up my feelings to spare you the details. Every day is new as I work through this. I have good days and bad days. Some days all I do is smile when I think of my husband, other days I can only cry. It simply means that I am ok. Not awesome, not wonderful, not wallowing in misery. When those times come I hope you’ll be there too, but when I’m ok trust me and let me be ok for as long as it lasts.

To the cancer community I say, Don’t ignore me.’ Bereaved spouses have so few resources. Sure, my partner’s story may not be an American Cancer Society commercial waiting to happen, but it’s mine, and it connects me to the larger community of those dealing with cancer in so many capacities. I’m not going to rain on your parade of positivity, nor is my “widowdom” any more contagious than the cancer that put me here. I shouldn’t get kicked out of the club because my story didn’t have the happiest ending. It’s still a story of hope, love, trust and living.

Being a widow is now a part of my story, a learning experience that makes me who I am. I learned this acceptance from my husband- that every experience has value, and it only has the power over you that you give it. It has happened, you have no choice but to accept it, so now what do you do with it?  You all already know my answer to that.”

If you’re a bereaved young adult, how do people around you respond?  If you are a survivor do you ever reach out to widows/widowers or does it freak you out – especially if you are still in treatment?  (Come on, be honest.) I think our community often sweeps bereavement under the young adult cancer rug.  This needs to change. Do you agree?

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June 19, 2009

Why I Love The American Cancer Society

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Early on in my five-year research stint on young adult cancer, I learned about the down sides of the American Cancer Society.  They have no direct support services, education, or research targeted to young adult cancer patients.   But let’s not throw the baby out with the bath water.  Here is why I love American Cancer Society anyway.

Check this out:  Young adults are the largest group of underinsured and uninsured adults in the United States.  This plays a huge part in our delayed diagnosis, and is a big reason why young adult cancer survival rates have not budged in 30 years.  Health insurance is one of our biggest barriers to survival, but who in the cancer community is stepping up the plate to talk about this?  Almost nobody but the American Cancer Society’s Cancer Action Network (ACS CAN).

I got a press release from ACS yesterday that calls upon Congress to enact legislation that will ditch evil pre-existing condition exclusions from health insurance. ACS CAN is asking legislators to make sure subsidies are available for cancer patients who can’t afford treatment.  ACS CAN spoke out about improving access to palliative care and so much more.  I get emails daily from young cancer survivors writing about these very issues.

When I was writing a section in my book about how young adult cancer survivors can make a difference, ACS was the only cancer org I found mobilizing to influence long lasting change around access to healthcare.  Only they truly understood that we have to use the power of our voices and votes to change cancer survival rates.  What could be more worthwhile?

Do you support the American Cancer Society?  Have you participated in fundraising efforts or action center?  What other kinds of services have they provided you with during cancer?

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