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.
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.
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.
My father built floor to ceiling cupboards along the walls when he closed in the garage of my childhood home. The top shelf of these storage units was four feet from the ceiling, just enough space for a fourth grader to comfortably nest. I would climb to that top shelf with a blanket, a pillow, a flashlight, a jar of marshmallow fluff, and a book. Everything a ten year old girl needs for happiness.
And I was happy when I was holed away in my little nest. It was my space. My quiet time. My place where I could be wholly myself with no roles to play. And as the only girl in a family with four boys, it was a safe place for me to be girly.
But mostly it was about the books.
I loved to read. I went through several books a week, often reading an entire chapter book in one sitting. I loved the Little House on the Prairie series, Little Women, Little Men, and the rest of the Louisa May Alcott books, Kidnapped, Heidi, The Swiss Family Robinson.
I loved to read. Past tense.
Somewhere along the way I lost the joy of reading. Maybe all those years of mutlitasking caught up with me, because now when I sit down to read, I can’t just read. I have to be doing something else at the same time. If I try to read without some other distraction, my mind will find one anyway.
Maybe the the ability to enjoy a book has been educated out of me. Oh, I can plow through a book in record time if it’s for school. But the intensity of reading for data, studying for exams, and culling information for papers has left me impatient with florid writing styles that take their time in revealing information. Give me the facts, preferably in a bulleted format.
I suppose I could also blame this on chemo brain, which is a very real condition that makes it much more difficult for those who have endured chemotherapy to retain and quickly process information. But in truth, this situation began a long time before I knew I had cancer.
The frustration in all of this is the fact that the love of reading is tied up in my self image. I think of myself as someone who loves to read. I present myself to the world as someone who loves to read. The amount of money I spend on library fines and book stores would suggest that I’m the kind of person who loves to read.
What I love, it turns out, is the potential of a good book. Oh, and the cover. I love to judge a book by it’s cover. There’s nothing like finding a great cover paired with a well written blurb on the back to get my fingertips tingling. Oh, this is going to be good.
And it is, usually. For the first 20 minutes. If I make it that far. But odds are my toddler will climb to the top of the bookshelf, or I’ll realize it’s 6pm and I haven’t figured out what’s for dinner yet, or I’ll notice the polish on my toes is chipped, and this is just taking too long anyways.
What I really want to read is:
I was sad and my life was a mess
I got my hands on an unrealistic amount of money
I went to Italy and ate a lot of food
I went to India and met a very wise redneck from Texas
I went to Indonesia and fell in love
See, was that so hard?
But I hate that. The snob in me is cringing at what I just wrote. The snob in me wants to analyze Eat, Pray, Love, to argue about it and disect it and, and, and, … but that means I have to come up with the attention span I had in fourth grade – an attention span long enough to actually finish a book.
I love books. I love the idea of books. I want to love reading books. I miss loving reading books. I want to love reading books again.
Has anyone else lost and refound their book mojo? How did you do it?
One of the frustrations I’ve had to deal with because of this breast cancer is my lopsidedness. Getting dressed in the morning takes quite a bit more thought and planning than ever before. I wasn’t small breasted to start with, but thanks to my mastectomy I have a bouncy D-Cup that swings a little lower since breastfeeding, and a rock hard, absurdly high, almost A-cup.
To make matters a little more interesting, the mastectomy side is augmented by a saline implant called an expander. I periodically go in for expansions, which means they inject more saline into the implant. This is in preparation for reconstruction after I complete the cancer treatment, but the expansions have to be complete before I start radiation. As a result, the size and shape of my mastectomy side “breast” changes to frequently. I’ll wait till the size and shape stabilizes to invest in a prosthesis, in the meantime I’m stuffing my bra with socks.
Yeah, you read that right. I’m stuffing my bra with socks. How very seventh grade. But at least in junior high they were both the same size, I wasn’t trying to make different sizes match each other. No matter how many socks I stuff into this bra, they will never bounce quite like my real breast.
The Stuffed Bra that Wont Stay Stuffed
These socks were made for wandering, and they do like to tour my chest wall as I’m moving about. They really like to get around while I’m running on the treadmill. Before I know it, they’ve worked their way under my armpit and each pump of my arm jams them a little further back under my arm, or even more frequently, they pile up right in the center of my chest. Excuse me a moment while I reach in and readjust my “girls” while running, and hopefully not stumbling, on the treadmill. Graceful, no? I find myself pushing my socks back into place as I walk around town. The boob is gone, it doesn’t feel like a boob anymore, so it’s easy to forget that while they’re just socks to me, to the average pedestrian it looks like I’m groping and playing with my boobs and I try to corral them back into place.
And yoga? the socks are likely to wind up just about anywhere, but I’ve mastered the art of readjustment during downward dog. People look at each other less during yoga anyways.
It’s not just while I’m exercising that the socks become an issue. A few weeks ago we sailed around Seattle on a gorgeous schooner. I disembarked the ship and my husband handed my 1 year old daughter down to me. She was a little wobbly on her feet as I set her down and knelt next to her on the deck. To catch her balance, she reached up and grabbed my shirt, and managed to grab my bra in the same handful. Out tumbled my sports socks in full sight of everyone looking down from the ship.
So if you see me out and about with a big lump under my arm, or up by my neck, or down by my abdomen, its just an errant sock trying to make a break for it. No need for concern. You might even be treated to a glimpse of my readjustment dance as I try to surreptitiously work it back into place.
I just joined an online challenge called 21*5*800 hosted by Bindu Wiles. 21 days. 5 days of yoga per week. 800 words per day.
I am so excited about this challenge.
The group is actually on day 4 of the challenge and I just got started. I’m just going to start where the group is, then add a few extra days at the end, probably just picking up the prompts I dropped from the first few days.
I’ve already decided that I while I intend to write my 800 words every day, I probably won’t share all of it, although I may share a portion. I want to get into a daily writing, and yoga, practice. I want to be able to be honest in my writing, and I have learned that I have to be much too careful about what I publish in this format. That said, today’s topic is relevant: Fear.
Fear has become a big part of my life since my breast cancer diagnosis. Fear of death? Certainly. Fear of pain? Oh, yes. Fear of being a burden on my family? Absolutely. Fear of the effects of my cancer on my one year old daughter? Terrifying.
I have found that the yoga helps. I’ve learned to breathe through the movements: the tough stretches, holding a challenging pose. That practice transfers to the uncomfortable and painful procedures. A deep breath and long slow exhale as I endure the poking and prodding makes all the difference. The pain is still there, but it is a bit more manageable. Focusing on my breath takes my focus away from the pain.
Fear takes me out of the present and puts me into the future – a future that is unknowable, yet my imagination tries it’s best to find every worst case scenario. Pain forces me into right now – so does my yoga practice. When I’m in now, what might happen doesn’t matter. Every moment has an infinity of possible outcomes.
When I’m seized by anxiety or panic, the yogic breathing can settle me down. Cleansing breath: long, slow exhale opens up more space in the lungs for a deeper, fuller inhale. Raise the arms to expand the chest, then slowly lower them as I exhale. Before I know it, I’m focusing more on how my body feels and improving this critical function. The fear is still there, but it is a bit more manageable. Focusing on my breath takes my focus away from the fear.
That’s not to say that fear is unwarranted. I have an aggressive form of breast cancer that has spread to the lymph nodes, complicated by another rare form of cancer that has a pretty grim prognosis. This is not something I can ignore or wish away. I also cannot focus only on the present. I am submitting myself to these procedures and chemotherapy, sacrificing my comfort and well being in the present, because I fear what will happen if I don’t, and in hope of improving my well being in the future.