“My Voice” by Amy Baker

Amy Baker - 'Survivor'

March 18th was my one-year “cancer-versary”. One year to the day that Dr. Ashikari called to tell me “there is a cancer there”. Five simple words.  Life changing words.  And, maybe, there is nothing simple about them at all.  That was the day my “journey” officially began.  Informally, of course, it had begun three weeks earlier when that first suspicious mammogram came back. But now here it was, all laid out for me. Delivered in the gentlest of tones: “there is a cancer there”.

The journey has been full of twists and turns, ups and downs. The highest of the highs and the lowest of the lows.  When I woke up in the recovery room after my bilateral mastectomy I felt elated. It was over, the cancer was gone.  I was up and walking that night, pushing the towering IV poll back and forth to the bathroom. Taking laps along the hospital corridors the next day. I could do this. Forty-eight hours out and I’m on my way home. No lifting more than 5 lbs., no raising my arms over shoulder level. No vacuuming—that I can handle. I have drains, four of them. Two holes on either side of my rib cage where tubes are stuck in and draining “leftover” fluids: first red, then orange, then yellow, into a lemon shaped plastic container attached at my hip. I will “nurse” them faithfully with gloved hands for the next eight days. Measuring and recording every cc with the utmost precision.

Personal hygiene will take a hit during this time. No showering while the drains are in. It’s hot outside. I return to the surgeon on day six but still too much fluid draining. Did I mention it’s hot? I’m reaching the point of no return in this regard. My emotions are all over the place. It’s the loss of estrogen they tell me. Breast tissue is mostly fat and fat contains estrogen. Once the breast tissue is gone my body is depleted of estrogen. Thus, the emotions are fierce.  And, I can barely walk ten yards without having to sit down. I’m extremely weak and just standing up takes its toll. “You’ll be anemic for a while, you lost a lot of blood. You are very vascular” the surgeon tells me. I wonder silently if this is a compliment. On day eight the drains are pulled. “One, two, three…” and out. The pain is exquisite. It launches me into tears. It is the pain but also the news I have gathered from an appointment earlier in the day. The cancer is invasive. No more tidy DCIS– stage 0, dust the hands together, and all done. Invasive.

That afternoon I go home. I look at my new chest in the mirror and the tears start to flow. They are perfectly lovely but they aren’t me. I cry in my husbands arms. They aren’t me.

A week or so later I find myself in the waiting room of the local oncology group. My husband and I are here to talk about the chemotherapy. It’s pretty much a done deal but what kind and for how long? AC or TC, dose dense or three week cycles? So many decisions to be made. The waiting room proves to be one of the darkest moments of the journey. There is a young woman over there, younger than me. She is with her sister I think. She is thin, emaciated actually. She is very sick and looks like she is dying. Will that be me someday? We are in the Valley of Death. Divorce Court is on the TV in the corner. Gary Coleman is hashing it out with his soon-to-be ex-prostitute-wife. Can things get much worse here?

Chemotherapy begins on May 21st, four days before my 40th birthday. I have taken the pills to prepare my body. Steroids so I don’t have an allergic reaction, anti-nausea meds. I’m not one to take a pill lightly. Typically more of a paranoid hypochondriac type, I avoid medicine of any kind, fearing that there will be side effects, an allergic reaction, or even sudden death. In this instance, I have to let go. Take the meds, accept what I cannot control. Have faith and try not to obsess. On the 21st at 11:00 a.m. I start my chemo. Kim is my oncology nurse, she is friendly, calming. She watches me to see if I will have a reaction. The IV starts pumping and we wait as each bag empties clear fluid into the port in my chest. Four and half hours later the last drip trickles in. I’m tired, the Benedryl fog is hanging over me. I’m flushed and hot but I made it through. And now I’ll await the aftermath.

The days following chemotherapy are all the same. First the powdery feeling as the toxins permeate my body and escape through my pores. The churning nausea that wakes me up from a sound sleep at 2 am. I force the fluids to drive the poison out of my body. Anti-nausea meds to be taken faithfully. Days two, three, and four drag on. I lounge in bed. I can’t stand the noise. I want to crawl into a hole and disappear.  From time to time my three-year old climbs into bed and wraps her arms gently around me– she knows. Day five it turns around. I can get out of the house and walk around the track at the elementary school. One lap, now two laps. I walk half a mile and it feels like a marathon to me—I’m back! It’s smooth sailing from here. One down, five to go. I can do this.

Eighteen weeks later and my chemo is finished. I’m anxious to be a real person again. Goodbye chemo, hello life. I’m back to work within three weeks. I wear a scarf to cover my semi-bald head. I get a lot of looks but I don’t care. I can’t stop to think about what I really must look like. My mental image of myself is surely much better than reality.  People offer me their chairs in waiting rooms but I feel fine so I know there is a disconnect between perception and reality. My eyes tear constantly; no eyelashes left to filter out the dust and debris.  I’m probably not ready to be back at work but I’m here. There is no more waiting around, life is calling.

And here I find myself one year later, my “cancer-versary”, if you will. I mark the day by quietly honoring it in my own head. I feel different now, after cancer. I’m a survivor: it’s a feeling that is always there—half physical, half emotional. Like the feeling you get when you take a deep breath and fill your lungs with air. Calm. And life goes on and everyone goes back to their business, and I heal and celebrate my very personal anniversaries quietly. Life is good, no, it’s fantastic, but it IS different. Now and for always I suppose.

For me, being a survivor means always having that frame of reference in the back of my mind. Remembering the darkness of the worst days and knowing that every other day, by comparison, seems like a complete and utter triumph.  Onward and upward –but the memory is kept safely tucked away in my pocket; pulled out for my own personal review any time the road starts to seem rough.

Yesterday, just about the time I would have been getting the call one year ago, I was playing in the backyard with my girls. We were playing Duck, Duck, Goose in the beautiful spring air. There were peels of laughter mixed with dirt and tears–the highest of the highs and the lowest of the lows. Just like my journey.