Everything Changes - The Guide to Young Adult Cancer

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.

I’m disturbed that in recent conversation about breast cancer guidelines, I’ve not heard anybody asking the question: ‘What is the most effective way to lower breast cancer mortality rates in young women?’

Prior to this announcement, I’ve spoken with staffers from key organizations serving young women with BC (breast cancer). They told me they’ve never seen studies on whether breast self exams (BSE) lower mortality rates in young women. I’ve read articles in which policy analysts and scientists agree this needs to be studied.

Cancer is terrifying and it is down right frightening to have BSEs diminished as a guideline when they are the one thing we have come to think of as a hopeful solution for young women.  But instead of defending a tool about which we have little scientific information, why don’t we get motivated about researching what will save our lives?

I’ve heard tons of stories over the years about young women who’ve found their BC themselves and use this as justification in favor of BSE.  We do know that across every age group the majority of BC is first found by women touching their own bodies accidentally or intentionally.  Nobody is debating this fact.  However there is a world of difference between the two questions of: “Do women find lumps when they do BSE?” and “Does doing BSE lower the mortality rate in young women age 15-39?”

Stories are motivation to find answers, but they are not the answers themselves.  The reason we draft legislation and raise money with walk-a-thons and pink ribbons is to fund smart science to help us make the most effective choices about preventing, detecting, and treating BC in young women. I wish the $45 million in Representative Wasserman’s EARLY ACT was directed towards investigating how to best lower mortality rates in young women with BC.  Show me a piece of evidence saying that BSE in young adults lowers the mortality rates of 15 - 39 year olds, and that the benefits of this outweigh the harms, and I think we will have hit the jackpot on what we need to do to take care of our generation.  Until then, as a community we need to demand that young women be taken seriously, and that government dollars be spent on researching our diseases so we can find  the most EFFECTIVE ways to save lives.

Cathy Bueti, a breast cancer survivor and author of Breastless in the City says:

“Although I found my lump it was not from doing a monthly BSE.  I never consistently did them.  Even today I only get thorough breast exams  when I see my doctors twice a year.    If I did BSE I would be on the phone every month in a panic with the doctor.  Young adults have crazy hormones that can cause frequent changes in breast tissue.  BSE can lead to unnecessary biopsy and is not going to increase survival rates in young adults.  I was told the lump I found most likely was growing for 10 years so it did not ensure early detection in my case.  However, I do believe it is important to stay familiar with your breasts so if you do find something that was never there before you can followup on it.”

As patients it is our obligation to know about breast cancer guidelines from scientific perspectives in addition to our own stories.  Here are some important links.  Read up!

U.S. Preventative Services Task Force (USPSTF) -  These are the folks who issued the guidelines and this link has their research and rationale.

National Breast Cancer Coalition Fund - These folks are an umbrella organization for a lot of other familiar cancer organizations.  This link takes you to a page where they discuss the needs and concerns about young women and breast cancer funding, research, and prevention.

Breast Cancer Action - These are some of the coolest gals in the breast cancer world.  This link talks about their take on mammograms in women age 40-49.  Yep, some of us in the YA cancer community are getting close 40!

Let me know what you think about whether young women’s voices have been included in this conversation.  Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

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.

I’ve been really into reading young adult fiction lately – less taxing on my brain after a long day of writing.  I love recalling the mindset of my middle and early high school years when everything around me was either cool or completely embarrassing.  It was a pretty narrow focus, one that cracked and splintered when anything more complex (like a family member’s cancer) arrived on the scene.

When tough times were going on around me, I saw straight though adults chumming up to me with pop-psychology, didactic books, and sentimental moments. All they elicited were eye rolls and a contemptuous desire to run out of the room screaming.  I could handle “learning moments” in the form of an After School Special, but that was about it.

That’s why I adore and highly recommend a slender new book Brushing Mom’s Hair, by Andrea Cheng.  A book of 52 short poem/vignettes about a 14-year-old whose mom has cancer,  there’s no room for the sappy crap adults want kids to learn and feel.  It reads like it was written by a 14-year-old.  She makes computer graphs charting her mom’s fluid intake, is stubborn, bratty, and sweet, obsessed with ballet, first kisses, and her weight.  Supposedly for teens, I think it’s a better match for middle school girls.  (I wasn’t reading Sweet Valley High in high school; I cared most about the insights of teenagers when I was in middle school.)

Nieces, nephews, students you are teaching, your own children, younger siblings.  Lots of young adult cancer patients talk to me about how kids in their lives respond to their cancer. How have kids in your life responded to your cancer?  Eye rolling?  Openness? Any tips for what works, what doesn’t when dealing with cancer and kids?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy’s dos and don’ts for living with breast cancer and parenting a 13-year-old son.

P.S. When I was a sophmore at Columbia University, I baby sat for Francine Pascal’s kids… Guess what - Fancine was actually a 30-something guy!

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

A few years ago, I had my doc ask for a second opinion from a second pathologist, who interpreted lab results differently than what the original lab report read.  This is a big deal when you are talking about cancer.  The words “second opinion” are used during the first weeks or months of cancer when we are setting up shop with our docs. But you can get a second opinion anytime you want (or anytime your insurance will cover it!)

Check out this short video. I was so drawn in, I felt like I was watching a full length documentary. I wanted to stay glued to the screen for an hour with a bucket of popcorn.

The gist is that Myriad, company in Salt Lake City, owns a patent on a few of your genes (BRCA1 and BRCA2) that show your likelihood of developing hereditary breast and ovarian cancer. What’s the big deal?  They are the only company that has the rights to do research, screening, or testing of these genes, as well as developing pharmaceuticals related to the genes.  You can’t get a second opinion from another lab to make sure the test is accurate or interpreted correctly. It also means they are the only game around so if you cannot afford 3,000 buck for their test you are SOL.

This is just wrong. Hats off to Breast Cancer Action for engaging the ACLU in a lawsuit to challenge the patent that the Federal Government gave to Myriad. I fully support their efforts and hope that they kick some ass.

Have you ever sought a second opinion beyond your initial diagnosis and choice in doctors? Have you done or would you do genetic testing? Would you want these tests performed by multiple labs to verify accuracy? What do you think of the ACLU’s suit?

I talk and write an awful lot about the loneliness of being single during cancer.  Yep, I’m married now, but I went through four years of cancer singledom before I met Shannon.

Being married means more than having someone to hold you after a horrible day at chemo.  Check out all of the perks afforded to married couples: Spouses get visitation rights, smoother application of  power of attorney, and can get our meds from the pharmacy no questions asked.  Spouses get to share insurance benefits and might even get special tax breaks.  Spouses have the built in support of sharing possessions, expenses, and are often built in caregivers.

I’m damn lucky to get these pluses and feel it is totally jive that single people and unmarried same sex partners don’t.  Here are some resources that, while they are a tiny drop in the bucket, are good ones to check out:

Hospital Visitation Authorization Document from the Human Rights Campaign - Instructs your doctor, care providers and hospital staff about who is allowed and given priority to visit you if you are hospitalized.  This is a great document, but as we have seen in recent news about a lesbian woman who had power of attorney and was still unable to visit her dying partner, these documents don’t always work in every real life situation.

Breast Cancer Recovery Infinite Boundaries Retreat – Special retreat for women who are or have gone through the experience of breast cancer without the support of a spouse, partner or significant other.  They have already held their session for this year, but I’d get on the mailing list so you can find out ASAP about next year’s - it fills up fast!

Are you/ were you single or unmarried during any part of cancer?  What were your biggest challenges?  How did you work around them?  I only mentioned the negatives.  Are there any benefits to being single or unmarried with cancer?

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?

As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?