I’ve spent the past two days working on a couple projects that have had me knee deep in photographs from the Young Survival Coalition. That’s had me a little emotional, to say the least: memories, faces, friends…
One of those projects a presentation on our getaway to the Harmony Hill Cancer Retreat Center. I’ve just got to share a few of these photos.
There’s just something about the ability to get away from it all, and bond with the girls –
girls who have been through what I’ve been through…
at my age, rather than me being the youngest by 30 years…
Who knew getting our craft on would be so cathartic?
or so much fun
We noshed on homegrown vegetarian fare
Wined a bit
Practiced a little yoga
enjoyed the scenery
and got a little clarity.
The words on the back of our jackets:
“When it hurts to look back, And you’re scared to look ahead, Look beside you… your friends will be there.”
I went straight to the bookstore after I got the “I’m sorry it’s cancer” phone call; surely amongst all the wisdom coded into letters and words, pressed to paper, and bound to books, would be some little snippet that would tell me how to move forward.
Since that day I’ve read a lot of books about living with cancer, but when Katherine Malmo placed the slender, uncorrected galley of “Who in This Room” in my hands, I knew I was in possession of something different.
Katherine’s book did not tell me how to move forward. But it was the first I’ve read that really connected with me on how it feels to have cancer.
That’s not to say the book is touchy-feely, in fact, it’s quite the opposite. One of my favorite quotes from the book shows her trepidation at joining a cancer support group: “You are afraid someone will try to hold your hand or leap from behind the ficus to hug you.” That pretty much sums up the way I felt the first time I walked into a support group meeting with the Young Survival Coalition.
I’m a little embarrassed to admit that I’ve had this book for well over a month, and I’ve been struggling with how to write this review. I want to tell you that reading this book is like going through the process of diagnosis, treatment, grieving, and moving on – but then who would want to read a book described like that?
And I do want you to read this book. I want my friends to read it. I want my family to read it. Because even though this is Kate’s story, it is my story, too. And the story of all my friends who have looked cancer in the eye, and stared down death… even if only for a little while.
This is not a sad book. This is not a book that is just about cancer, although that obviously drives the story line. This is a story about getting up every day and living. And this is a book that ends at the start of her brand new life.
Yesterday I spent the day manning the door at a wine-tasting representing 16 different local wineries. Every year, this event chooses a different charity to which the proceeds are donated. This year, the beneficiary was the Seattle affiliate of the Young Survival Coalition, which supports pre-menopausal women with breast cancer.
Most people, as they came through the door, were thrilled to learn that the proceeds of the event would benefit @YSCSeattle. One woman, however, was not. She took exception to the fact that this charity focused on the needs of young women. “It’s all the same!” she insisted. I started to launch into the standard spiel, when she fixed a look on me that clearly said she would not hear more on the issue, and any further discussion was unwelcome. I let her pass with a smile, and turned my attention back to the door.
Since she wouldn’t hear me then, ya’ll get to hear me now. I’m here to tell you, it’s Not the Same. (Just let me be clear here: these opinions are my own, I am not speaking as an agent of YSC Seattle.)
It’s not the same
Cancer affects everyone differently, and it’s a devastating diagnosis regardless of age. I don’t know exactly why this woman took exception to the age focus of the Young Survival Coalition. I would have asked her, had I been able to engage in conversation; short of that, I can only guess. Perhaps she felt it was an issue of ageism, that young women are perceived as more valuable than older women. I can imagine her frustration if that is the case. But understanding how a young woman’s breast cancer is different from an elderly woman’s cancer reveals issues that are much more complex. An elderly woman’s life is just as valuable as a young woman’s life, but the issues they encounter as a result of their cancer are quite different.
We go through a number of different stages through the life cycle, and cancer affects people in each different stage of life differently as well. A three-year-old diagnosed with breast cancer may relate better to other toddlers with cancer than a group of 30-year-olds or a bunch of 80-year-olds. Regardless of where we are in the life cycle, we tend to relate better to peers within our own age group who have similar experiences and challenges.
The truth is that the vast majority of the services provided for women with breast cancer focus on elderly women. Aside from those sponsored by the Young Survival Coalition, I was the youngest by a good 20 to 30 years at most of the cancer related activities in which I have participated. Young women with cancer have different needs, socially and medically.
Lets talk about that for a minute
Young women with breast cancer tend to have much more aggressive cancers that are diagnosed at a much later stage, meaning it’s more frequently deadly.
Most studies exclude women under 40, meaning those with the more aggressive cancers are not included in much of the breast cancer research.
Well, that’s a little frustrating.
There are other issues as well. What happens if you are diagnosed with cancer at the height of your career? When women still have to work twice as hard to even approach equal pay with men, adding a cancer diagnosis significantly impacts your ability to make a living. And with health insurance tied to your job, that further complicates things. Sure, there’s FMLA that is supposed to protect your job, but that’s only if you work for a big company. And COBRA extends your coverage if you can manage paying 103% of the full cost, on top of your co-pay and the 20% the insurance doesn’t cover. These rules are there to protect employees, but it doesn’t always work. There are ways around them, and corporations can afford lawyers, employees can’t.
Then there is the whole issue of saving for retirement. We had to empty out our retirement accounts at 40 years old to get through my year of cancer. That means we’re starting over from scratch, zero retirement saved up at this moment. We’ve already accepted the fact that retirement is just not going to be an option, we’ll just work till we fall over.
Now, imagine the single mom trying to balance a career, raising her children, and cancer in light of all that.
It’s not the same
And it helps to be able to discuss these issues with others who have gone through it as well.
Then there is the sex issue. I’m not so naive as to assume that elderly women don’t have sex. Considering that I hope to live long enough to be an elderly woman, I’d like to believe there is plenty of good sex involved. I’d also like to think that in my 80s my husband and I will be celebrating our 50th wedding anniversary. I could be way off here, but I imagine that the impact of a mastectomy on a 50 year old marriage might be a little different than for a woman who just got married, or is planning a wedding, or still looking for the love of her life. I understand that is a huge assumption on my part, but I think it’s one worth considering.
Now let’s talk about fertility. I don’t know how 80 year old women feel about their fertility, or lack thereof, but 20- or 30-somethings with a rapidly-ticking biological clock tend to think about it quite a bit. To have it suddenly and abruptly threatened or destroyed adds another layer of stress to the young woman facing a breast cancer diagnosis. Once you’ve survived cancer, your dreams have to be rewritten. Adoption? Sure, for those who are willing to adopt out to a cancer survivor. But don’t forget that cancer has already depleted finances, so the exorbitant fees charged for adoption are even more difficult to overcome. Surrogacy? Also an option, provided you are financially able to preserve the eggs before treatment and pay for the fertility services and the surrogate after treatment.
Most women diagnosed with cancer at an older age have adult children. That is a completely different situation from a woman who is diagnosed with breast cancer while she is still breast feeding her baby, or worse, while she is still pregnant. Imagine having to decide whether to proceed with chemo during pregnancy, or postpone it until the baby is born.
My breast cancer negatively impacted my daughter’s health. We had to emergency wean her for the mastectomy, and she lost two pounds; that’s a huge loss for an infant. It was several months before she was really thriving again. After the mastectomy, I couldn’t pick her up either, compounding my feelings of guilt while my baby was failing to thrive. What got me through this difficult time with my sanity intact? Being able to connect with other young women who had been through what I was going through. Being able to see that it is possible to raise bright and vibrant children while going through this dark experience made all the difference for me.
A room full of elderly women with breast cancer would never have been able to help me get through this in the way that the young survivors did.
It’s Not the Same.
And I’ll bet an 80 year old woman would not be very comfortable sitting in our support group either. She might have trouble finding someone with whom she could relate as well. The Young Survival Coalition doesn’t focus on age out of disrespect for elderly women, in fact reaching old age is one of our goals. We focus on age because young women are an underserved demographic of breast cancer survivors, and this is a way to get them some sorely needed support.
She had warm eyes and the sweetest smile, but it was her wit that took my breath away. You had to pay attention because her comments were quiet, under-the-breath, but they would make you snort-laugh and shoot your champagne out your nose.
To be honest, I didn’t know her very well, we only met a few times, yet here I sit with a hole in my heart. I wanted to know her better. I intended to get to know her, but we ran out of time, and now it will never happen.
Elizabeth belonged to my support group, the Young Survival Coalition, a circle of friends all battling breast cancer much too young. Daughters and grand daughters, sisters, friends, wives, and mothers of young children – a group of women I embrace, knowing full well that it will lead to my heart break again, and again, and again.
This is where it gets real. You might think losing my hair or the amputation of a breast would make it real, but those are such trivial things when death becomes an issue. I know that in the years to come, some of these women I hold so close to my heart will die. I know I might be one of them. There is so much love in this group, and so much understanding. These women comprehend the pain, the fatigue, the body image issues, the adjustment to life with this monster inside, and worst of all, the fear that someone else will end up raising your child. They live with it, too.
This is the first time since my diagnosis that someone I know died of breast cancer. I hope I never get used to it.
Godspeed E-beth, and love to your husband and children.
Shortly after I was diagnosed with breast cancer, my baby lost two pounds. The breast had to go; I had to quickly wean a baby who was interested in eating nothing but breast milk. This weight loss was nearly as traumatic for me as the cancer diagnosis.
Then, I connected with the Young Survival Coalition (YSC) and met a group of women who understood exactly what I was going through. These women knew from experience how difficult it can be to balance treatment with parenting.
The Young Survival Coalition is an organization that supports pre-menopausal women who have breast cancer. Why a group that focuses just on the younger women with breast cancer?
Breast cancer in younger women tends to be more aggressive with a lower survival rate, and studies increasingly suggest that breast cancer in younger women is biologically different from the breast cancer that older women get.
Breast cancer is the leading cause of cancer death in women between the ages of 15 and 54.
Because fewer young women get breast cancer, they are not adequately represented in breast cancer research.
We have not yet developed an effective breast cancer screening tool for young women.
Young women deal with different issues than post-menopausal women: effects of treatment on fertility, child rearing, pregnancy after diagnosis, diagnosis during pregnancy, menopause caused by treatment, body image, dating for single women, the list goes on…
I’ve been through a lot in this cancer ordeal. I’m nearly halfway through the chemotherapy phase of my treatment, and that will be followed by radiation. The doctors are working to save my body, my friends at YSC have helped save my sanity. I can’t say enough wonderful things about this group of women and the support they provide.
CoffeeJitters is an affiliate to a number of sites and services. I do not endorse products I don't love. I may receive compensation if you purchase items from links on this website.
. 
. 
. 
. 
. 
. 
. 
. 
. 
” in my hands, I knew I was in possession of something different.
