This morning I heard the story of Aleisha Hunter, who was diagnosed with Breast Cancer when she was three years old. I had to rush right home to hug my baby.
When I was diagnosed with breast cancer, I understood that my daughter’s risk for developing cancer was increased, but it didn’t occur to me that she could develop it as a toddler.
That’s an odd thing for me to say; since my diagnosis, I have been drumming in to my friends and neighbors, and everyone with whom I interact online, that no one is too young to get breast cancer. I tell people not to let a doctor, or anyone else, be dismissive of a breast lump or discomfort, or suggest it couldn’t be cancer because of your age. It was easy for me to say a 20-year-old is not too young to get breast cancer, but my mind did not allow me to extend that caution to toddlers.
I spend a lot of time thinking about this diagnosis and how to manage the fear, particularly in reference to my daughter. How do I teach her to live her life at full speed, while still teaching her to take care. I don’t want to teach her to be fearful; I don’t want her to live a life of timidity and fear. On the other hand, I don’t want her to be dismissive of danger. Where do you find that balance? I have thought about teaching her to do breast exams, but the time frame I had in mind was a whole lot closer to puberty. Actually, that probably still wont change. But I want to find ways of discussing breast cancer and breast exams, not as a way of looking for a monster that is to be feared, but just a part of self care, like putting on a seat belt when you get in the car, not an anxious event, but one you wouldn’t overlook either.
But, as in other aspects of parenting, I think the best way to teach her to not let fear take control, to teach her to balance boldness with prudence, is to be a good example.
Hmmm….
I’m nearly done with treatment. I have two weeks left of radiation and then six months herceptin and then I just get on with my life, hoping the beast does not return. I can’t say it will be back to life as usual, because post-cancer life involves a bit of looking back over your shoulder. Post-cancer life means scans every six months to see if the cancer is regrouping for another attack. Post-cancer life means every ache and pain takes on a new meaning, it means asking “Am I being a hypochondriac, or would ignoring this ache be irresponsible?” It means paying extra attention to what lawmakers are doing – will their actions restrict my access to insurance or health care? Heightened awareness is a necessity. The trick, it seems, is to find a way to prevent that focus and attention from becoming a fixation and translating into fear.
And I’ve got to figure this out quick, because I have a little girl watching my every move.
My heart goes out to Aleisha, and her family. She underwent a full mastectomy, inluding lymph node disection, and is expected to make a full recovery. Thinking ahead to those awkward years of puberty and breast development, I hope she is able to develop and maintain a strong and healthy body image, and that she too finds a way to balance boldness with prudence.
I also hope that by spreading this story we can help save more lives. Breast cancer is not a disease of the aged, it can strike at any time. Please check your boobies.
A year ago I stood at the mirror, glaring at my left breast which was starting to show the strain of breastfeeding my baby. The good boob, the one on the right, remained as firm and perky as it was when I was 18. I couldn’t have guessed that all that perkiness was supplied by 11 centimeters of cancerous tumor.
I now have a scar that runs from under my arm almost all the way to my sternum. I have 5 little pin-sized tattoos that are used to line me up in the beastly machine that irradiates my skin – which is now burned rough and red from collarbone to abdomen, and breastbone to armpit. In the place where my breast used to be is an implant called an expander (Aaron calls it my bionic boob) with the mission of stretching the skin to hopefully make it possible for doctors to manufacture a new breast once I complete treatment.
My left side is scarred as well, with the tell-tale 2-inch horizontal line just below my collarbone where the medi-port was installed for my chemo infusions. Cancer survivors recognize each other by this this little scar that peeks out from any kind of V-neck top. The port shows through my skin, and my husband and I joked that with these implants and my bald head, I should have dressed up as a Borg for Halloween. Beneath the skin and ribs, my heart has been damaged by the chemo drugs as well.
The memory of wishing that my left breast was more like my “good” boob now brings a chill. But the left breast will soon become a scar as well, as I’m having a second mastectomy with my reconstruction this summer. The type of cancer I have has an extremely high rate of recurrence.
My attitude towards these scars is changing. Each scar tells a story, and since I’m still kicking, each scar represents a challenge I overcame. I’m learning to accept them as a kind of private little merit badge. Having a supportive husband helps. And since the perky boob, the “good” boob, turned out to be evil, it’s worth mentioning that just because something is pretty doesn’t mean it’s good.
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.
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.
