I am approaching the 2 year anniversary of when I started my Chemotherapy treatments; it was the Spring of 2008. A lot happens in 2 years and yet some days, it feels as if it never happened–almost. Here is a piece for a Grub Street class that I will be shopping out for publication. It is written in “Collage” form and really sums up how Chemo turned my whole world upside-down while I tried to create normalcy for my family. It’s kind of long and many parts you may recognize from other pieces — which is why it’s called a “collage” piece. I welcome your feedback, good and bad, as to whether or not you feel this is worthy of publication. Thanks.
Running Through Chemo
Through my passenger side window I see them in their cars on their way to work. They drink coffee and talk on cell phones. I sit in silence while my husband drives. We listen to the droning talk of NPR on the car radio. He does not ask me how I am feeling whch is good, because I don’t know how I would answer. He does not ask me if I am scared which I’m sure he thinks would be too obvious. Since it is to be my first treatment, I don’t yet know about the long wait in the waiting room surrounded by men and woman in various stages of illness and treatment. I have yet to see the overly sunny infusion room where leather recliners line the walls like a furniture showroom. I haven’t met Heidi. I don’t know yet that Heidi will have to wear protective clothing when she injects me with the Adriamycin because if she gets it on her skin it will burn a hole in her flesh. I do not know this yet–or the feeling of sick-panic as I watch this toxic liquid go into my veins. Nor do I know yet how much I will come to love Heidi and her smiling face and infectious laugh. I haven’t learned about the ultimate trust you can put into another human being—one you have just met.
What I do know is that the car is barely moving through traffic and that we might be late and that I have to pee because a friend told me that the best way to avoid getting sick with chemo was to stay well hydrated. I know that my husband looks tired. I know that he didn’t mean what he said at dinner last night when I asked him what he learned from the book I gave him, “The Breast Cancer Husband.” I know he didn’t mean it when he said he learned that if “he didn’t leave me before, then he certainly wouldn’t leave me now.” I know he meant this to be re-assuring.
Now I can see the hospital entrance and the concrete ramp walls as we pull up into the garage – it is still so early in the morning, barely 6:30, and only the parking attendants are there.
What exactly are the side effects, Doctor Anderson?
The biggest problem is the nausea and vomiting and/or diarrhea with loss of appetite, but we can control that with other drugs like Zofran, Compazine, Reglan, Emend and Ativan and we’ll give you a steroid to increase your appetite.
But I don’t even like to take aspirin.
It is a sensory onslaught. The snap of the needles as they access your port, the crackle of ice packs, the ripping of tape. It’s the sweet sticky smell of the cold crimson poison coursed through your veins, warm packs on the infusion sight, dry mouth, metallic tasting water that doesn’t quench your thirst, queasy stomach; the salty taste as you swallow your tears… You close your eyes, try to listen to music, open your eyes, try to read a book, sleep, wake up, smile at the nurse, then it’s done. You go home and take massive amounts of anti-nausea medicine. Some make your heart race, some put you to sleep, some make you cry, but they are all supposed to make your stomach not jump around.
There is of course the hair loss –fourteen days after your second infusion your hair will fall out. Some people just go ahead and shave their head– it’s a way to have some control.
Maybe I won’t lose mine.
My baldhead is shiny and prickly at the same time. When I run my hand from my forehead to the back it feels as smooth as crushed velvet but when I rub my hand back upwards to the scalp it feels as scratchy as a cat’s tongue. It is ugly and beautiful and embarrassing and empowering. It screams to the world that I have cancer and it whispers to me at night that I may not survive. It is shapelier than some and tinier than most. There is no hiding under my baldhead. Every wrinkle, line, acne scar stands at attention on my face.
“This was a really bad idea,” I say to my husband.
There are so many people around us, hundreds of children and parents clamoring to buy overpriced popcorn, candy, soda and pretzels, before the show starts. Pushing us around. Their close proximity is making me sweat. I don’t know why we are here, especially during April vacation. Our usual trip to Myrtle Beach cancelled this year because of my stupid cancer. Why did I think this was a consolation prize? The Greatest Show on Earth? Hardly. My kids are far too old at 14 and 11 to be here. Even the 8 year old seems aggravated. My head is itchy. It’s too hot. Everyone is staring at my head. Everyone knows I am wearing a wig.
“Calvin!” I say to my oldest son, trying to get his attention.
“How does my hair look?” I whisper at him over the noise.
“How-Does-My-Hair-Look? Do you think people can tell it’s a wig?”
He stares at me for a moment while I wait patiently for his words of reassurance and encouragement. Words like “No Ma, it looks great.” Or, “You can’t tell at all.” But instead, as if I were a department store mannequin, he reaches up with both hands, grabs my hair and shifts it to the right with a slight yank.
“There,” he says, “That’s better.”
There will be a decrease in your white blood cell count called bone marrow suppression but you will give yourself a shot after each chemo treatment to increase the amount of cells, which will cause joint and muscle pain. Because of your repressed immune system you should stay away from crowded places like schools.
What about Nursing Homes?
“I’m sorry mom, but I think this is really it. You won’t be going home this time. It’s not safe for you anymore.”
“That’s all right dear, don’t worry about me. Everyone is very nice here. I just wish she would leave,” she said pointing at her roommate in the curtained area next to her bed.
“She seems nice,” I lie, glancing at the woman who blocked my way on purpose with her wheelchair when I tried to enter. She probably sensed my disgust, my utter impatience with the aged. My sister-in-law never understood how I would much rather spend a day with a roomful of children than the elderly. She always preferred the opposite – but, sometimes we have no choice.
“Listen, Mom, I am not going to be able to come visit for a few months while I am getting chemo.” Could she see the relief on my face? After 25 years, I had grown weary of this trip to Hingham from the North Shore – now I had an excuse, carte blanche from my oncologist.
“I never lost my hair, you know,” she said running her crooked hand through her still thick locks.
“Right, Mom, that’s because you had radiation, not chemo, remember?”
“Still as thick as ever. You have beautiful hair, you know that? Do you know how beautiful you are? You don’t do you? I never thought I was beautiful. Tom Callahan used to tell me I had the most gorgeous legs –but I never believed him.”
“I know, Ma. Will you be all right without me for a while? Maureen and Karen will still come, and I will call, but you know, the germs and all.”
I was surprised by her strength when she grabbed my hand, her rings cutting into my skin, “I worry about you every day – it’s not fair, you are so young, and I am so old.”
“Oh, please don’t cry. Really I will be fine, look, I am strong, really. It’s no big deal.”
Neuropathy is another side effect – a numbness that occurs in the hands and feet; this can be permanent.
But how can I run on numb feet?
Most days, I walk a tightrope of sanity. Running is the velcro that secures my sneakers to that rope. It helps me avoid the tumble into the abyss of insecurity and paranoia that waits to swallow me. While I run, my head gets cleared of all the negative thoughts about my friends and my family. It allows me the time alone with my feelings to understand that life can be hard but that there is so much to appreciate as well. It’s free and quick and allows me to eat cookies –lots and lots of cookies. Some days as I run through the streets of my suburban town, I list my blessings, as my mother always tells me to do. I have 3 beautiful and healthy children, a house, a family, and some truly supportive friends, My feet and knees are still intact so I am lucky in that respect. This feeling of thankfulness particularly happens on cool crisp fall morning runs. Although I now run year round, it’s the fall days that bring my spirit back. The late morning sun warms my back while a brisk breeze cools my face. There is nothing like jogging through newly fallen leaves and inhaling the smell of burning wood to make you appreciate the seasons and remind you why you live in New England.
What else, doctor?
The combination of A/C, Taxol and a full year of Herceptin, can sometimes be toxic to your heart, causing congestive heart failure, but it is rare.
Wait. You know I do triathlons. What happens if my heart is damaged?
Well, if you want to get rid of the cancer then you have to take those chances. Besides you should be fine –you are an athlete.
“Maybe we should go home,” my 11-year-old son said to me as I stopped at the stone wall at the top of our street, my hands on my knees.
I can’t catch my breath.
“No, let me just sit here a minute.”
Aidan sat next to me, putting the library books down on the ground between us so he could rub my back.
“Do you want me to run home and get dad?”
“Let me think a minute.”
“You know what, let’s just head back home. I need to lie down, ok? We’ll go to the library tomorrow.
I wasn’t expecting the phone call so soon as I drove home from the hospital after my MUGA heart scan –a nasty test where they take out some of your blood, mix it with
radiation and shoot it back into your veins—to see if my heart was failing. I wasn’t 20 minutes away when my oncologist’s name came up on my cell phone. “You were right,” she said, “They called me from radiation. Your Left Ventricular Function has dropped significantly, looks like we are going to have to stop the chemo for a while, maybe for good. Go on vacation and relax. We’ll revisit this at the end of the summer.”
We know now that the heart damage is permanent but we need to finish the treatment. Let’s pick up where we left off.
I don’t want the weekly Taxol –just give me the year of Herceptin—there are far less side effects.
Well, we really recommend the Taxol.
No, I’m good.
“She doesn’t recognize you.”
“Mom, it’s me, I haven’t been here in a while.”
“Have you ever driven with, Franny?’
“I am Franny, Mom.”
“You are pretty. I like your haircut.”
“Mom it’s me.”
“Have you ever driven with Franny? It’s a tough ride. A tough ride.”
“Mom, are you comfortable? I’m sorry I haven’t called in a while.”
“Tough ride with Franny, have you ever driven with her?”
“Well yes, I have as a matter of fact…and she certainly always gets you there on time, now doesn’t she?”
Bet you never thought you’d see this day.
Today is your very last infusion
You mean, that’s it?
“This place is bad enough in the daytime –it’s seriously creepy in the middle of the night.”
“Can you help me dress her?” my sister asked me.
“Maureen, the funeral home will do that.” I knew they were on their way, they only gave us two hours with her before they called the mortician.
My mother’s roommate snored in the bed next to us and a woman was screaming across the hall for somebody “anybody” to help her.
“I am not sending her out of here in someone else’s nasty bathrobe, she would never forgive me.”
I laughed at this. Maureen had never been more serious.
“Black or Brown belt?”
I looked down at my mother, whose body, even in the few hours since her last breath, had begun to contort. She didn’t look peaceful to me. She looked as if she had struggled against the inevitable right up until the last minute.
“I should have come to see her more.”
“Well you couldn’t,” my sister said, pulling a tan jacket out of the closet and holding the belt against it to see if it matched, “besides, it’s too late now.”
When the IV line beeped, signifying my last bag of medicine was empty, and my port was de-accessed, I headed for the elevator, said goodbye like any other day and walked through the garage to my car. I left that building that I had visited every 3 weeks– sometimes more often than that– for the last year and a half, the halls of which signified a beacon of hope in an otherwise bleak forecast to my future. I left, looking for a parade in my honor. Of course, there was no parade, just the garage attendant who took my money and stamped my ticket like he had every other day.
Leaves fell like tickertape as I ran through my suburban streets last week –and I learned something about living in the moment. I realized that if I think about how much farther I have to go until the end of my run or even visualize a hill that I will be ascending a few streets away then my run becomes very difficult. I become tired and weak, my legs feel heavy and, I begin to think that I won’t make it through the whole route. If, on the other hand, I concentrate on how my legs feel with each footfall and how pleasant the cool air is against my face, or how much I love the song that is reverberating in my ears, then I feel invincible –like I could run all day.