A year ago I was blissfully ignorant
A year ago my baby was still a baby, and I was just a new mom trying to do it all
A year ago I was clueless that something was trying to kill me
A year ago I was a little frustrated with the pain of breast feeding
A year ago I figured it was just mastitis – again
A year ago I made an appointment to see my doctor
The next day I went in
“I’m not sure that’s mastitis – I’m ordering a mammogram”
Five
Long
Days . till that mammogram
“Hmmmm… dense tissue, lets try an ultrasound”
“Is it cancer?”
“I can’t make a diagnosis”
“What else could it be?”
“Well, that’s just it… . let’s do a biopsy”
My favorite chemo buddy, Gem, accompanied me to my Herceptin infusion on Friday.
We also brought along a horse (of course), and some coloring materials.
I made several attempts at taking a picture of us together where I didn’t look stoned or have my eyes closed
no luck.
but this picture just cracks me up – what WAS she looking at? And my chins could be used for counting lessons.
We piled string cheese, cookies, apple juice and magazines together and had a picnic right there on the bed. If you have to get chemo, and hopefully you don’t, a picnic in the middle of the bed is not a bad way to spend the time. (Also, don’t try to take your kid to chemo till you’ve had several rounds of chemo and know what you’re getting in to and how much your child can handle. SCCA, where I get my treatment, provides individual rooms for patients rather than bunching them all into on big room.)
About the Herceptin: If you are confused because several months ago I triumphantly proclaimed that I was done with chemotherapy, that’s understandable. Technically I am done with chemo. Herceptin is actually a biological agent, and (thank goodness) doesn’t have the debilitating side effects of regular chemotherapy. But I still call it chemo, because it’s easier than describing the difference. It’s administered the same way and by the same people as the chemo treatments..
The type of cancer that I have is HER2+, which is an extremely aggressive cancer with a high rate of recurrence. The one good thing about HER2+ cancer is the development of the drug Herceptin, which is able to specifically target the HER2+ flagged cancer cells, meaning there’s no wholesale assault on the body. Herceptin does not leave me nauseous, or fatigued, or cause pain like the other forms of chemo.
The big downside to Herceptin is that it is hard on the heart, so hard that I have to have a MUGA scan every 3 months to measure my heart functions. I just recently re-started the Herceptin after having to take a break because of reduced heart functions. The work of the medical oncologist seems to me as much art as science – a delicate balance combined with trial and error. It’s really amazing what they do.
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.
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.
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