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.
Where have you discovered community, online or otherwise, in 2010? What community would you like to join, create or more deeply connect with in 2011? (Reverb 10 – Day 7 / Prompt Author: caligater)
I started 2010 with my thoughts on community.
I enjoy my friends individually, but I missed belonging to a circle of friends. It’s been a long time since I had local friends who were friends with each other. It’s even more complicated now that some have kids, and some don’t. Schedules don’t sync up, we go weeks without seeing each other, and I end up craving grownup conversation. I was looking for a community to join at the beginning of the year. Specifically, I was looking for a writers’ group.
Cancer made a difference.
I was having grownup conversations with my doctors that no one should have to have. But cancer also led me to a circle of women, all breast cancer survivors, who would become my friends. At least twice a month I connect with other women, many with babies and young children, who understand what I’m going through. This community is not only helping me through this difficult diagnosis, it is addressing issues that existed before I knew I had cancer.
As I look ahead to 2011
I plan to find more communities. I am going to renew my search for a good writers’ group; I need the writing practice, and I thoroughly enjoyed my previous experience belonging to a writers’ group.
But there is something else that has been weighing on my heart since my diagnosis. Cancer support groups tend to be divided up by diagnosis, and they tend to be exclusive. Every day I count myself fortunate that my cancer cells first attacked my breast. Breast cancer is a popular cause, and while there is still so much need, most support groups and services are exclusively dedicated to breast cancer survivors.
Sure, most women with cancer happen to have breast cancer, but that is no comfort for the 29-year-old single mom in a support group full of 60-year-old men because she has rectal cancer. Would you want to discuss your chemo induced menopause in that environment? She’s receiving many of the same chemo drugs, and the radiation differs just in location. That young woman has no access to the Komen funds that help pay the rent of breast cancer survivors, or the house keeping services for breast cancer survivors, or the circle of young moms battling breast cancer. Fundraisers for ‘Save the Ta-Tas,’ T.I.T.S. (Two in the Shirt), and any number of other tongue in cheek parties that combine boobs with booze fill our social calendars, but nobody wants to go to a save the rectums party. Just because the cancer cells first attacked her caboose instead of her headlights, this young woman is excluded from an amazing array of cancer coping resources. And she is not alone. Millions are in the same predicament.
So let’s bring those millions together.
Or, as far as the Seattle area is concerned, lets bring those hundreds together.
I want to create a community for young adults with cancer, especially mothers of young children, that is inclusive rather than exclusive.
And then I want to find a way to help get them the kind of amazing support, financial and otherwise, that I have received as a breast cancer survivor.
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.
As we wind down the end of October and Breast Cancer Awareness Month, I’ve heard a number of complaints that go so far as to say we should just forget Breast Cancer Awareness Month altogether because of all the pinkwashing.
What is pinkwashing? When corporate jerks slap a pink ribbon on a product or service to increase the likelihood it will sell during Breast Cancer Awareness Month, but little money, or even none, is actually forwarded on to the non-profits working to cure breast cancer or support those battling this disease.
Pinkwashing is infuriating. It turns my stomach that these corporate creeps are using my crisis to make a quick buck.
But let’s not throw the baby out with the bathwater.
In the seven months since my diagnosis, I’ve met so many women, both here in Seattle and out on the interwebs, who found their lump in October. They found it because of all the chatter, all the pink, all the hype caused them to pause and take a second look at their own breasts. Breast Cancer Awareness Month saves lives.
I recently attended a lecture on breast cancer where I learned, among other things, that the most exciting advances in all of cancer research are happening in the field of breast cancer. Life expectancy is improving every year. Komen for the Cure is second only to the US Government in funding this research. That means all those walks and all those fundraisers really are saving lives. So thank you to all of you who walk or donate. You are making a difference.
The Pink Daisy Project and the Young Survival Coalition also receive a large percentage of their funding during Breast Cancer Awareness Month. Rather than focusing on research, these organizations help women with breast cancer endure until we find a cure.
Both of these organizations have had a huge impact on my life. Imagination does not do justice to the financial and emotional devastation of a cancer diagnosis. When I was buried under a never-ending pile of housework that added up during treatment, and digging through the couch for change to buy diapers, the Pink Daisy Project took care of the practical concerns that come with battling cancer. They hired a house keeping service to help dig me out of the mess, and sent me grocery gift cards to buy the necessities of life. Each woman is helped in a way that meets their specific needs. They helped one young woman who was losing her battle with cancer to get family portraits before she passed away. It breaks my heart to think how much those photos meant.
The Young Survival Coalition (YSC) is saving my sanity. There are so many issues that come up for young women battling cancer that might be different for the 60 year old woman with breast cancer: parenting, early menopause, more aggressive cancers, higher mortality, sexuality, reconstruction, dating, marriage, fertility, pregnancy, and adoption just to name a few. Many YSC members were told by medical professionals that they were too young to have breast cancer. You can get breast cancer as soon as you hit puberty, and it is the leading cause of cancer death in women between the ages of 15 and 54. In addition to functioning as a support group for young women battling breast cancer, YSC is working to educate the public and the medical community about the growing number of women diagnosed so young, to encourage earlier diagnosis, and to better represent young women with breast cancer in the sample groups for medical trials.
Ending Breast Cancer Awareness Month would seriously impact the ability of these organizations to fund their good work. Sure, there is a buttload of money going into the pockets of corporate jerks that are just using us. But don’t let the fact that these corporate buttheads exist undo a good thing. Educate yourself. Take a close look at what you are buying. Does it just have a pink ribbon attached? Is there more information available about where the funds go – and how much? Remember even a penny is “a portion of the proceeds.”
Pay attention to what you are buying and Think Before You Pink. But lets keep Breast Cancer Awareness Month around for a while. We still need to cure this disease.
A marriage takes a lot of work; so does keeping a day job (or going to school), maintaining a home, and raising children. When you have cancer, there are times when the fight for your life takes more work than all of the above combined.
Since my diagnosis, I have been reaching out to women with cancer, both in the real world and online. One of the things that has surprised me the most is the number of relationships that have dissolved post diagnosis. It’s not one or two, it’s a lot.
Cancer and Marriage
Cancer adds a lot of stress to a marriage.
Every story is different. In some cases it was the person with cancer who left; in others, it was the co-survivor (what we call the spouse or partner of the person with cancer). They are all wildly different stories, and come from people leading different lives: from all different parts of the world, rich, poor, educated, uneducated, religious, non-religious. It’s tempting to be judgmental, but only the people in that relationship truly know their story. Let’s not pass judgment.
I’ve only been married for 6 years. I’ve only been married once. I’m not a marriage counselor. I don’t profess to have any special knowledge that would help others prevent or reverse marriage trouble, but I’ve witnessed a few things, experienced a few things, and had a few thoughts.
National statistics tell us that roughly half of all marriages in this country end in divorce. Those statistics are silent on the issue of cancer. Every relationship has its issues, and cancer doesn’t make those issues go away. In fact, there are times when cancer amplifies them. Cancer has a way of amplifying everything.
The one thing that has helped me maintain my sanity and perspective throughout this cancer ordeal is membership in a support group. I belong to the Young Survival Coalition which provides support for young women with breast cancer.
Our discussions in group are confidential, but I can tell you that at times they deal with issues in our relationships. A phrase came out at one of the meetings, and we’ve all been loving it and using it since: “You don’t go to the hardware store to get bread.” That one little phrase has been of immense help to me.
I love my husband. He is one of the most amazing people I have ever met. But I don’t expect him to be my everything. I have other people in my life: my daughter, my family, my friends, my support group. They all fill different roles, and provide support in different ways. And when I don’t expect my husband to fill the role of one of my girl friends, we get along much better. One of my friends in the support group told me: “We’ll be your bakery.”
When I unload in the group about cancer (where it is expected and appropriate) instead of unloading on my husband, we get along much better. That’s not to say I don’t tell my husband everything. He pretty much hears it all, but it’s not all at once. It’s not a deluge of problems and issues that I dump in his lap the moment he walks in the door. It’s not a bitch and whine session. It’s not constant complaining. I’ve already gotten that out of my system – dumped on the support group that completely understands what I’m going through. I already got my bread, so when I tell my husband what’s going through my head, or through my body, I can say things without that whiny tone in my voice or unrealistic expectations.
Does this have anything at all to do with the relationships that broke up? Maybe. Maybe not. I have no idea. Every relationship is different. Every person is different. This is just what helped me. Having a support group helps me be a better partner in our relationship. Believe it or not, I think practicing jiu-jitsu helps my husband be a better partner in our relationship. I’m sure other people have completely different activities that help them approach their relationship with more patience, compassion, and understanding.
I wish love, patience, compassion, and understanding could make a marriage bulletproof.
A cancer diagnosis teaches you not to take things for granted: your life, your health, your breasts, your hair. I’m adding relationships to that list.
For a more encouraging look at marriage and cancer, read my post The Promise.
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