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.
I’ve been procrastinating on writing a blog post for a very long time now. It’s Christmas. It’s the end of the year. It’s the beginning of the new year. So much pressure to write a deep, meaningful, soul searching, profound piece that sums up the meaning of life, and what I’ve learned this year. Or at least pull together a humorous and/or touching year in review post.
This year I learned I have cancer. I endured two surgeries, 6 months of chemo, and I’m currently on radiation. I survived. My family survived. I haven’t completely messed up my daughter. yet.
This year was too deep, and too long, for me to sum up in one pretty, little post. Maybe one of these days, when I’ve put some distance between me and what I endured, I’ll be able to write something meaningful about this year, and my experience. For now, I don’t want to think. I don’t want to plumb the depths of my soul. I don’t want to share what’s in my heart. I haven’t processed it yet. That will take some time.
Besides all that, I’ve been sick. I don’t mean cancer sick; I mean coughing, sneezing, mucus like rubber cement, don’t you dare turn on the lights, throbbing sinuses, and it feels like a mile-long hike just getting to the bathroom sick. I’m feeling much better, and starting to dig my way out of the haze now, but this has been lingering since before Christmas. To all of you waiting on a return email, or phone call, I’m sorry. I’ll get back to you soon. If you’re waiting on a Christmas card… ha ha ha. giggle. snort. Yeah, right, it’s been years since I was organized enough to send those out – even when I was healthy.
Don’t get me wrong. I’m happy. I’m afraid the first few paragraphs of this post may have led you to believe I’m bitter and pouting about this year. Not so much. I just don’t understand how I feel about it all yet. I need more time to sort it out.
Early last month, I started the Reverb10 project with such enthusiasm, but found myself avoiding my computer for the month of December, because I knew each new reverb prompt would lead to more thinking. Shudder. I still plan on continuing the Reverb10 project, but on my own timeline. It may take me the remainder of 2011 to finish, and I may not make public all my responses, but I think it’s a wonderful way of reviewing where I’ve been, and making plans for the future.
You still want to know about the day my husband threw up and saved our relationship? Gross. Ok, just kidding, that would have piqued my interest as well. Earlier today, my husband reminded me of this moment in the history of our relationship. That memory is what brought me back to my computer to write, and thus, the reason the title of this post is dedicated to that moment.
Long before we got married, and about 6 months after we met, I decided that falling in love with Aaron would be terribly inconvenient. I wasn’t ready to be in love (this after years of “looking for love in all the wrong places”). I went around the house and gathered up the items of his that had accumulated (CDs, a hat, a shirt… ) and placed them next to the door, ready to send them and him on their way when he arrived at my place after work.
When he showed up, he brushed past me, rushed to the bathroom, and spent what felt like forever in there puking. Monstrous, earth shattering, roaring, I’ve never heard anyone puke like that. By the time he was done, cleaned up, and passed out in my bed, I had given up on thoughts of breaking off the relationship. I grabbed his possessions by the door and redistributed them back around the house. It was too late. I was already in love.
Instead of fighting what is, I needed to accept it (good or bad), and then decide how I was going to respond to it.
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.
Encapsulate the year 2010 in one word. Explain why you’re choosing that word. Now, imagine it’s one year from today, what would you like the word to be that captures 2011 for you?
I didn’t have to think very long or very hard to assign a word for this year. Cancer consumed my energy and time, but the one word I would use to describe this year is hope. Hope is what drives me, what gets me out of bed every day. Hope is what I see every time I look at my daughter. Hope is why I subjected myself to all the ick of treatment.
For what am I hopeful? A cure? Of course. And until then, I’d like to battle this cancer back, and not have any recurrence.
I’m hopeful I’ll have many more tomorrows.
I’m hopeful I’ll outlive my daughter’s childhood.
But there’s more than that – I’m 40 now, it’s about time for a midlife crisis. Imagine what happens to a midlife crisis when the universe says this might actually be the end of your life.
I’m a late bloomer: at 40, I’m still working on getting my bachelors degree, I haven’t yet started a career from which I could eventually retire, I’ve never been off this continent, I’ve just been married a few years, and my daughter isn’t even two yet. This mid-life crisis had already been messing with me when I was diagnosed with stage 3 breast cancer.
There is so much I want to do with my life. Most importantly, I want to be the one to raise my daughter, to guide her through adolescence and into adulthood, and to be there for her if and when she starts her own family. I want to get old with my husband. I want to travel around the world. I want to finish my degree – for myself, but also as an example to my daughter. I also want to write a book, and more than that, to make a living as a writer. I’ve wanted to be a writer since I first comprehended that someone wrote the words I was reading when I was in Kindergarten. I have two big ideas for non-profits I want to get started. I want to make a mark on the world. I want to make a difference. I want to make the world a better place.
So hope it is: Hope that I can be here to raise a confident, intelligent, and compassionate young woman, and Hope that I can finish my degree, muster the confidence to start submitting my writing for publication (perhaps even some travel writing from all the adventures The Husband and I will have together), and get the ball rolling on righting some wrongs in this world.
That’s a lot to pack into one little four-letter word.
If I just listed off all the things for which I’m thankful this year, the list would go on for several pages, and I wouldn’t be able to complete it in one day. As I do have plans to spend some time with my family, I’ll try to keep this short and just point out a few of the biggies:
My amazing husband who takes such good care of me, especially on the chemo days when I’m feeling so crappy
My creative, beautiful, and intelligent daughter who brightens every day and showers me with kisses and hugs
The wonderful people who came over and helped out when I had my surgery and during chemo – Mom, Dee, Sharon and Perry, Kristen, Mary Jane, Diane, Carrie, Candace, and Sommer, to name a few
Completing chemo – yes, that’s right, I’m done with chemo!
My cancer was found before it metastasized
The amazing doctors and nurses at the University of Washington Medical Center and Seattle Cancer Care Alliance. Over the years I’ve received medical care in a lot of different systems, and this is by far the best care I have received in my life.
Medicaid. I qualified for medicaid which is making it possible for me to receive this wonderful medical care. Medicaid is saving my life right now, and 18 months ago it saved my daughter’s life. I don’t know how we will pay rent next week, or the power bill, but we have food in the freezer, and I can fight my cancer. I’m not proud of the fact that we need this assistance, and I know its a source of embarrassment to my family members who fight so hard to eradicate publicly funded medical care, but I am extremely thankful that this assistance exists and makes it possible for me to battle cancer. Thanks to the health insurance reform bill, my cancer will not prevent me from getting health insurance once we get jobs, so one day I will be able to get off Medicaid, hopefully someday soon.
Here’s wishing you all a safe, healthy, and happy Thanksgiving.
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