This year, my Aunt asked me to speak about survivorship at a fundraiser she chairs. They raised $176K for medical research to find a cure for breast cancer.
I was honored to speak, but nervous. This time instead of talking about a fight I had “won” I would be talking about my state of being And it’s not always pretty. And it’s very personal.
Blogging is so much easier.
But, the act of sharing, the idea of educating, is still important. so here you go … my speech. And your education about being a survivor.
I will be honest – before going through this, I didn’t even think survivorship was a noun … merely a state of being done with cancer – like part of a life timeline. Before kids, after kids. Before cancer, after cancer.
But survivorship is much more than a time marker. It is a noun, and a verb, and an adjective … sometimes even an expletive at our house. But, mostly a blessing.
I think about how I must appear to the outside world – those that didn’t know me on my journey. Now, being three years out, a lot of people have no idea when they meet me that there’s anything beneath the surface. I mean, I probably look pretty together.
There are none of the visible markers of cancer or chemo – I have hair – which take it from me, has not always been a given. I have eyelashes and energy.
Because I look fine on the outside, people couldn’t possibly know is the chaos and pain and ups and downs that my family has endured. Life is good. Life looks good. But it is not, nor will it ever be, normal again.
So a quick version of my backstory. I was diagnosed with Stage 3a breast cancer in 2012. I had not done self-exams in years. Between breastfeeding and motherhood, who has the time? I had twin 5 year olds and a 7 year old.
And so what if one lady pointed up and one pointed down – I had nursed three kids, including the twins, for over 6 months. The ladies were tired. Frankly, so was I!
I had passed my annual and GYN doctors’ exams with nothing unusual. But my husband got promoted to an executive position in Dubai, and in advance of our move, my GYN recommended a mammogram “just as a baseline” before we headed overseas. That mammogram saved my life.
My cancer is now gone—three years in August. I had a sum total of 2 years of treatment: six months of fatiguing, balding chemo, a double mastectomy, six weeks of daily radiation, and over a year of reconstructive surgeries.
And, in case you were wondering, you are considered a survivor as soon as you begin battle with breast cancer. That should tell you something.
I often feel like I have this little piece of myself – my survivorship – that I carry with me in my pocket – that others wouldn’t see unless I shared. Kind of like that song about the brownie smile in girl scouts “there’s something in my pocket that I keep it very close to me in a most convenient place?”
Only mine is a survivorship smile, something I keep in there and rub when I’m feeling down or crazy or frustrated. It’s in my pocket – out of general view, something I don’t often share.
To me, it is obvious much has changed. For example, my body is totally different. In order to lower the chance that the cancer will come back, I opted for the double mastectomy. A fun medical term– because I only had cancer on my left side, my mastectomy was considered prophylactic because it was to protect me from a future occurrence. Now that’s probably not what you think of with prophylactic right? A lot more fun things come to mind?
Now, I did get to swap out the bum boob models for perky gelatinous silicone implants. A size of my own choosing? Yes please – let’s go up to a C shall we?
I think we can all agree these implants look good. But, I can’t feel anything on my skin there because the nerve endings are dead after radiation and months of surgeries. I actually find myself running into walls with my boobs just because they are bigger and stick out more than I ever had naturally and because I have no sensation. I have to admit, it’s hard to feel too sexy when you can’t feel whether your bra is on or off.
I was also put on tamoxifen, which is a drug that literally blocks my body’s ability to uptake estrogen. For me, I have had many side effects, but lowering my chance of the cancer coming back from 15% to 8% is worth it.
One common side effect is becoming post menopausal. Now I have been lucky enough to get all of the super fun side effects – night sweats! Weight gain! Insomnia! BUT I still get my monthly visitor. Not cool, science, not cool.
As for those side effects, about three weeks after I went on the drug, I gained 30 pounds. Very quickly. Now it turns out that this coincided with the Christmas holiday – so that number may not be totally fair. After all, I ate my way through an entire block of cream cheese jalapeno dip and about 33 bon bons.
But, my entire body shape has never recovered and it wasn’t just Christmas. I lost some of the weight, but I now have the post-menopausal issue of muffin top. The styles I used to love before no longer can work. This may seem vain, but I used to have a small waist and I loved fit and flare. Belted. Now I alternate between strategic draping and stretchy waist bands and girdles.
To combat this change, I have upped the amount of exercise I get – I think I am fitter than I was before cancer. I play tennis and do barre and yoga or crossfit 4-5 times a week. I have done the diet thing – I went through a phase where I was so restrictive that I didn’t allow myself an alcoholic drink for weeks. As some of you know, with three kids that is no way to live sustainably.
And guess what’s even worse, my belly never got flat, my waist never got trim. I think that could be a second job – all consuming – and still not see what I saw before.
I also have insomnia – worsened when I drink more than one alcoholic drink. Or caffeine after 3pm. And, as a survivor, I have to watch for side effects. But, everything feels like a side effect. Is that a lesion? Or just gas?
Finally, there is chemo brain. Which is actually a medical thing. Whatever poor brain cells I had left over after pregnancies had no chance.
My best analogy is swiss cheese memory. When I can’t remember that person’s name after the fourth time that I’ve met them and they know my name and my family name and have been to my house …. I mean, I showed up to a tennis match a month ago in flip flops and had to run to Wal Mart to get tennis shoes. But yes, I won the match,
And, every time you go to a new doctor or dentists or spa or anything, you will have to fill out that you had cancer on your forms. Yes, I had cancer. Yes I take tamoxifen, yes I had surgery. YES. I now take 6 drugs to sleep, reduce anxiety, keep the cancer from coming back, and function. YES.
At the end of the day, though I am lucky. I am able to choose to take tamoxifen and struggle to have a 50-year old waistline with my 20-year old boobs. I am able to claim survival. To see my kids grow up and be crazy and ask “remember the time when you had no hair Mom?”
Yes, I remember.
I get to muddle through life missing homework assignments and class parent names and driving to the wrong soccer field.
Survivorship does not mean cure. It is a set of side effects and a state of being. It is a glorious wondrous chance at the world again – living without regrets as much as possible and hugging and laughing.
With distance from the soul-crushing fight comes pride. Each time I go over my history, I feel that survivorship ribbon sitting in my pocket. I realize what I did and what I’ve been through and what my family and I accomplished. I try each day to accept the changes to my body and my mind. Knowing they aren’t the end of anything – just differences.
And sometimes, like tonight, I take out that survivorship and put it on like a great big brownie smile. And then I can reflect and remember and rejoice. I get to remember that survivorship is the best possible state of being. It is love and respect. And it is pride. It is life.