“She went through the treatment…”

December 19th, 2009

Getting a cancer diagnosis is like falling. The diagnosis does not happen all at once, so there is a period of time –– it always feels like too long –– of just falling in the dark and not knowing where the bottom is.

If you are lucky, you have people in your life who reach out their hands to you as you are spiraling downward. They give hugs, bring food, send gifts. They all express their sadness and helplessness at
watching you fall, wishing they could catch you, put out a net, somehow bring you back to the regular life that feels like the earth.

One thing that happens is that they tell you stories designed to reassure you. There is one in particular you hear again and again:  “I know somebody who was diagnosed at Stage X. She went through the treatment. And now she’s fine.” On the one hand, you grasp at that story for the lifeline it represents. “I am not doomed!”  you think,
praying that somebody will some day tell the same story about you. On the other hand, that middle phrase is ominous, a black box. A black hole really.

“She went through the treatment.”

The treatment, huh? Can I tell you a little bit about the hell that is “the treatment?” Forgive the graphic nature of what follows. Skip it if you prefer. I’ve been told by more than one doctor that I am a rip-
the-bandage-off-quickly kind of patient, so perhaps detailing the horror of my treatment is yet another of my coping mechanisms, along with Scrabble, walking, and chocolate.

For me, the treatment starts with chemotherapy. I chose the less harsh of the two chemo options, and thank God, I can tell that it is already working. I take my chemo intravenously, in 4 hour infusions that begin with a dose of Benadryl so large it makes me hallucinate, followed next by a dose of steroids that will cause me to gain weight and overeat and be moody. During the infusion, my mouth fills with an awful metallic taste. The chemo itself has the guaranteed side effects of nausea, fatigue, forgetfulness, and hair loss. In addition, it will make me menopausal, so I’ll get hot flashes and hormone fluctuations as a bonus to these other symptoms. Chemo causes a drying out of all the mucous membranes, so my nose, which is extra sensitive to all smells from all the chemicals coursing through my veins, feels like it is on fire, and I have a persistent malaise from the irritation
throughout my intestinal tract. I am told to brush my teeth with an anti-dryness toothpaste three times a day. I can already feel the inflammation in my gums. The anti-nausea and pain medication cause terrible constipation and all its related discomfort. My oncologist told me that, because of my personality and profession, the cognitive
impairments would be both noticeable and frustrating to me. She is right. My short-term memory is shot, and I feel like I have ADHD when I see my day strewn with partially completed tasks. All of these symptoms get cumulatively worse over time, so every time I dive back down for more treatment, I know it’s going to only be harder to swim back to the surface where I can breathe a vague sense of normalcy.

I will get six rounds of chemotherapy, and continue with 12 more infusions of the drug Herceptin that targets my specific cancer. That will only make me nauseous so it seems tolerable in comparison to the chemo. Because I will be getting eighteen infusions altogether, they have installed a subclavicular port. The word installation, of course,
obscures the fact that this happened surgically and means that there is a button on my chest that forces me to only sleep on one side of my body, leaving me sore all over. If my toddler gets too rambunctious, he might accidentally elbow it, leaving me in pain for at least a few hours. I don’t mean to sound ungrateful. I chose the port, because it
allows me to get injections without risking the deterioration of my veins from the harsh chemicals or the leakage of these into my system, which could be toxic and cause permanent nerve damage. A friend of mine opted not to have the port, and by the end of her treatment, the nurses were poking her weakened body with butterfly needles, searching for “good” veins in her pinkies. The port leaves me at risk of infection and blood clots. It has thin tubing threaded through my subclavicular vein into my superior vena cava. Once my treatment is done, in about one year, I will go through another surgery to have it removed. It will leave a little scar underneath my collarbone.

After I finish my chemo, I will undergo surgery. It is still not clear whether or not I will have a double or single mastectomy. The two surgeons I have spoken to feel I only need a single. Three of the four oncologists vote for the double. Although I am negative for the (known) breast cancer genes, I am young and my chances of new disease
approach 40%. A lot of people (myself included) have made jokes about having gravity-proof boobs as an upside to this ordeal. But a double mastectomy and reconstruction are not the same as Dr. 90210 implants. A mastectomy is really an amputation. Almost half of women who get mastectomies experience recurrent pain in their chest and arms three years after surgery. To reconstruct the breasts, the surgeon can’t just plop in a couple of saline bags. They have to take some of your latissimus dorsi muscles from your back and bring them to the front to
create a support structure for the new breasts. To make aerolae, they either take skin from your inner thigh (which  –– who knew? –– is naturally darker) or tattoo a circle on with ink. They have some skin bunching technique for making fake nipples too. The new breastlike structures have little sensation. Friends tell me they feel cold a lot of the time and their only sensation is that of pressure.

Because my lymph nodes were positive for cancer, the surgeon will also remove as many lymph nodes as she can find when she operates. My lymph system will thus be compromised. This puts me at risk for lymphedema in my right arm, the side from which the nodes would be removed. Lymphedema causes the arm to swell abnormally. My right arm will always be at greater risk of infection so that any cut or poke on that side will require careful monitoring. I saw a woman at Gilda’s Club who had to wear an elastic sleeve on her arm because her lymphedema
was so bad. But some people only wear the sleeve some of the time, like when they are on an airplane.

Before I get reconstruction, which will be surgery number 4 –– after port installation, masectom(ies?), and port removal ––  I will live for about a year with my body part(s) missing. Once I heal from surgery, I will have six and a half weeks of radiation, five days a week. Each radiation session will last about a half hour. I am lucky because the location of my tumors is such that my heart will not be under the linear accelerator, saving me from damaging that vital muscle. My lungs will be in the targeted therapy area, that approximately 4 x 6 rectangular area the radiation oncologist marked on my chest during our consultation. She told me that I may lose 5-10% of my lung capacity. To receive treatment, I will lie on a table with my arm above my head, placed in an immobilizer while the machines whirl to give me my daily dose of radiation. The treatment will cause burning, rash, itch and possibly peeling on my skin.  The whole side effects thing is a roll of the dice, of course, but people often
experience fatigue as well. I remember my brother really hated radiation, so I am probably more fearful of it as a result.

These are just the physical realities of treatment. None of this describes its psychological toll. I thought I had gone deep in my exploration of mortality and the unjust randomness of disease when I lost my brother to cancer two years ago. I am surprised to find that experiencing my own disease has brought my mind to new terrain. I am
typically an upbeat and optimistic person, but recently, I have generated nihilistic thoughts that could give Kafka a run for his money. How do you process moments like the oncologist saying that just seven years ago, this form of cancer would not be curable? Immediately, there is relief and gratitude, but there is a simultaneous horror. I have been in an existential tailspin that I can only begin to describe. How do I repay my debt to the researchers to whom I now owe my life? Perhaps I owe as much to Jonas Salk, but his discovery is so ordinary now its easier to overlook. I grieve for the women who had this diagnosis a mere eight years before me. I wonder ahead to the possibility of a less medieval treatment altogether. There are so many places for a mind to go.

As much as I understand the biology of mutinous cells turning on my otherwise healthy body, some irrational part of me still looks for culpability. Did I do something to deserve this? Did my childhood asthma turn my cells into inflamed time bombs? My step-brother had cancer at an unusually young age: what creek did we play in that was
contaminated with hexavalent chromium? I am not alone in this superstitious thinking. In my conversations, other people search for reasons too. Not in a mean way, but as a defense against the frightening senselessness of it. Does it run in your family? they’ll drop offhandedly. (No.) Did you smoke? Drink? Did you live near some
chemical waste? (No, no, no.) Origin stories, I have found, waste my precious mental energy.

My energy. I never realized how much I did in a normal day until I felt the exertion of completing a small fraction of my usual tasks. I have always been one of those “how does she do it?” women, with a big family and a successful career. Maybe the chemo brain is a blessing sometimes, because the most frustrating moments come when I feel like myself in my head and still can’t carry out all that I feel I should do. It is a particularly cruel form of torture for somebody like me, used to doing so much, to be sidelined from everything from packing lunches to writing journal articles.

The rollercoaster of cancer does not just come from the ups and downs of the symptoms or my own swinging moods. I am seeing two faces of the world simultaneously, straddling these two extreme realities. At the
same time I am experiencing the horror of cancer, I am overwhelmed by lovingkindness. The outpouring of support –– from strangers, acquaintances, friends old and new –– has been nothing short of
astonishing. When I was first diagnosed, my first thought was, “I can’t do this to my family! I can’t do this to my children!” My husband has shown that he really meant it when he said in sickness or in health, proving the depths of his love and strength as he takes over what have always been my parental duties. My mother has moved out
here for the year so that my children can have another caretaker who still is part of the family. My friends, my colleagues, and my community have buffered us in a way that is nothing short of magical. A fabulous babysitter with a zap of an email. Delicious meals appearing daily at our door. Special outings with special people for
my beloved children. And chocolate. Lots and lots of chocolate.

And so it is. And that, my dear friends, is the crazy part. As I stand on the crest of these seemingly irreconcilable realities, I am unequivocally one of the lucky ones. My brother went through this same hell and got the news from his oncologist that he had an “orphan disease”; they did not know how to treat him. His treatments involved
a lot of educated guesswork and long shots in the dark. Last Friday, I went to a spa day at Gilda’s Club. It didn’t involve scented oils, steam rooms, or terry robes but restorative yoga classes and nutritious lunches donated by Whole Foods. I was definitely the youngest person there. But during the reflexology class, I rubbed the feet of a woman my mother’s age with metastatic disease who was just trying to strategize treatments to keep her life going. I sat next to a woman who lost one son to bone cancer, whose second son was in the sixth year of his fight, and who now is battling her own breast cancer. I am so forunate. I have insurance. I have a family who loves
me. I have friends who fly across the country to hold my hand and take care of me. I have a community who provides me with babysitting and meals. I have employers who have told me my duty this year is to get
better. Most miraculously of all, I am curable.

I am thankful for this every day. Every moment that I start to sink into the abyss, I am lifted by this knowledge and filled with a profound sense of gratitude. I can endure this hell if it means I will get my life back on the other end. I know I will be changed, both physically and mentally, but if I can go back to my hectic days of
carpools and classes and meetings, I will never take them for granted. I will know the value of my family, friends, and neighbors in a truer way.

So I am blessed. And so I am grateful.

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This entry was posted on Saturday, December 19th, 2009 at 1:01 am and is filed under Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.