patient and doctor at table, with stethoscope and papers on table

I’ve got an unusual, almost weird relationship with these people. Usually, when I meet people I like so much, I ask them their spouses’ names, ask them about themselves, even ask them over for dinner. But “these people” are my oncologist and his team in the infusion room where I get my chemo. I alternate between wanting to know them better and wanting never to see them again. Like I said, it’s weird.

As a group, they are very, very smart. They are all good listeners. They are also good communicators. They are all extremely competent at their part of what they do for me. They work well as a team, something I always admire when I see it in any organization. These qualities stem, I’m sure, from the captain of the team, my oncologist. He possesses all of those qualities too, and I’m sure he hires those who have them. It’s a lot easier to describe a group of people who work this way together than it is to create that type of working environment, so I know there is time well-spent on team-building. I admire all of this.

Every interaction with every member of this team is competent and efficient. And, on time. The patient (me) is a baton in the smooth relay of services they provide me on chemo days. From the technician who takes my weight and temperature when I arrive each chemo day, to the nurse who is assigned to give me my pre-chemo meds, the chemo itself, and bandage my port at the end of the infusions that day, I am extremely well-cared-for. It’s a treat to find a group of people who take such good care of me, and ordinarily I’d be trying to get to know some of them better. But then the truth of our relationship hits me.

From what I’m told, once I’m done with all my treatment for breast cancer, I’ll have a lifetime relationship with my oncologist. I’ll be coming back for check-ups on a regular basis, and maybe over the years I’ll get around to asking him those questions I mentioned above. I’m happy I’ll continue to be examined here; it means I’ll not sever my bonds to this group of people completely. I can stick my head into the infusion room when I have those check-ups to see the people I know. But it will be with a certain amount of wistfulness that I never got to know any of them better.

Because the truth is that I cannot wait not see them every week! (I cannot wait for chemo to end!)

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When you are first diagnosed with breast cancer, there are so many things you must learn: what stage of cancer is a well-known descriptor, but you also learn about the various characteristics of your exact cancer. The important next words, from the reports from the initial needle biopsy, had to do with estrogen and progesterone positive or negative and, whether the cancer was HER2neu positive or negative. There are also differences in whether our cancer has spread to other parts of our body. This is one reason why a phrase I began to see as my research progressed is that, “it’s not breast cancer, it’s breast cancers.” And I started to be glad I’d liked biology, from high school on.

Just the language of cancer is overwhelming at first. The diagnosis and its details are important; they will determine the exact nature of the treatment plan you develop with your doctors. Your surgeon will use a lot of names of body parts and functions, and you should ask as many questions as you need to, to understand what she or he is telling you about the removal of your lesion. There are lots of new words and lots of pamphlets with explanations using more new words. I’m old enough to remember the first publishing of “Our Bodies, Ourselves,” and a breast cancer diagnosis has, for me, felt like a similar “I hadn’t planned on this, but I’m learning how my body works” experience.

I also was glad I like science when the first roadblock in my care occurred very early on: I arrived for a MRI ordered by my breast surgeon, and the technician at the facility turned me away because I’d not had a required blood test. I was furious. I’d driven over, gotten myself psyched to lie very still for an hour or so, and this guy named Bruce was telling me not very nicely to go home. But Bruce finally got through to me that the test was for my own good, to determine whether my kidneys could handle the contrast agent used during the MRI. Well, hey, that is in my best interest to know. So, I swallowed my fury (completely out of scale with what had happened, by the way; I was newly diagnosed and still quite emotional) and left, and got the important test taken care of right away.

Human biology also comes in handy when those test results come back. The reports give you lots of information, but it doesn’t become useful information until my doctor explains to me what they mean to her. I remember learning the importance of white blood cells in fighting infection, but I don’t understand the numeric values of the tests my doctor orders pertaining to white blood cells until I ask her what they mean. Now that I’m receiving chemo, that’s an important marker for my doctor to watch and for me to understand.

And, when your oncologist begins using the names of the chemo drugs, and even if, like me, you liked biology, your eyes might spin in your head! She will have printed information you can have on each drug. But the names are still not rolling off my tongue, after five infusions. I must remember to ask why their names must be made up so many disparate syllables…

The main thing I like about trying to understand the science side of this experience is that it helps my fears to subside. Once I feel I can understand the whys of the treatment plan, or why we can’t do something I thought we were going to do but my tests show we need to wait, I understand and I feel a little calmer. My doctor tells me now when I’ve asked her about something that scientists haven’t figured out yet, and that is good to know, too.

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In December 2016, I opened up a letter from my insurance carrier.

The sentence leapt off the page, “We have reviewed your claim, and have decided that you meet the criteria for total disability.”

I read it again, just to be sure I understood it. There it was: “total disability.” I blinked, stunned, and then drew a ragged breath.

The moment was bittersweet. A wave of relief washed over me, overriding my disbelief. I would not have to return to work. The pressure inside began to dissipate. A part of me almost felt giddy. I would not have to push through the pain anymore, nor would I be forced to live in a state of constant fatigue.

But another, more deeply hidden part of me registered this fact, and I found myself in the maw of a different kind of pain. I would not have to return to work. My heart broke as I realized that I had lost a crucial piece of my life. With a single sentence, my career was finished. Gone. Purpose, structure, a piece of identity – each felt like it was dropped over a cliff.

The letter was an enormous turning point in my cancer journey. In June 2012, at age 42, I had been diagnosed with early stage triple negative breast cancer. Surgery, dose dense chemotherapy and radiation treatment saved my life. But it also left me with a rare and debilitating side effect: chemotherapy induced peripheral neuropathy (CIPN). My nerve endings were severely damaged, and left me with chronic pain in my hands and feet. The constant burning and tingling sensations often radiated upwards, into my arms and legs, giving way to stabbing pains, electric shocks, and a dull bone ache. At its worst, it engulfed most of my skeleton, landing me in the hospital.

Despite these symptoms, I did my best to return to work following treatment. I was determined that cancer would not steal one more moment of my life. For two and a half years, I soldiered through increasing pain, more medications, and a baseline of discomfort that crept steadily higher. Finally, my doctor sent me off on short-term medical leave, tripling my medications and ordering me to rest and focus solely on bringing down the stubborn pain thresholds. Short term leave became long-term disability. Everyone – my employer, my insurer, and I – hoped that the cocktail of medication and rest would reset my body, and eventually I would return to my job as a secondary school vice principal.

But the cumulative impact of swallowing 20 two pills daily for ten months finally proved too much for my body. For six months, I vomited multiple times each day, until I finally went to the ER . Over the next few weeks, the hospital ran multiple tests to rule out a relapse. Finally my oncologist delivered the news happily, I was cancer free! But the CIPN was determined to be, “Permanent. Incurable. Difficult to manage.” Given that my body was faltering under the only tools available for symptom management, I was told my job was to rethink how I was managing my health.

“Find a way to live with this long-term side effect that doesn’t aggravate it,” the oncologist intoned. Yet she had no more insight or knowledge about how to do that than I. “Good luck – I will see you in six months.”

I turned to yoga, and high CBD oil, in an effort to find less toxic tools to manage the pain. Slowly, my body responded in a limited manner, and I was hopeful that I would eventually return to work. But I was blinded by the determination to “go back” to the life I so dearly missed. For months – and against the advice of the yogi – I pushed myself hard at the studio, ignoring the pain signals in my hands and feet because, “Permanent, incurable, difficult to manage,” meant I had no expectation of a pain free range of motion. If the pain was immutable, then I would have to simply push through it to ensure that the rest of my body was as strong and resilient as possible when I returned to work.

But I was wrong. The task before me was not one of reclamation. It was one of rebuilding. Creating a new life as a disabled person would only happen once I let go of my attachment to my previous, healthy life. It was a devastating reality check, leaving me bereft and grieving. Many months later, I still struggle to make peace with the label “total disability.”

Today, my life hardly resembles the one I had built prior to cancer. As an upwardly mobile, independently minded professional, my days were busy, stressful and fulfilling. Managing the beautiful chaos of a large public high school was a gratifying task that required grit, humor and an ability to put in long hours of multitasking in a fast paced environment. I miss being that person, and initially this liminal space was disorienting, like a wasteland of empty time stretching before me without definition.

Yearning for the past only prolonged my pain, however. Despite my grief, I have learned that letting go is the first step in recreating myself. My world now revolves around a single goal: keeping pain thresholds as low as possible.

Daily appointments with yoga classes, massage therapy or physiotherapy fill my time. Hours of yoga have begun to repair my sense of identity – the message that my value lies in the ability to “do,” by climbing the ladder of professional success, or achieving recognition in my field. Instead, I embrace an ethic of “asana” or “comfortable seat.”

Honoring my body, rather than fighting it by trying to overrule the pain has humbled me, but brought healing in the form of pain free range of motion at the studio. (Imagine my surprise at this discovery). It has required an enormous commitment to “satya” (speaking truthfully) about the daily pain and the many modifications this requires in my yoga practice. Telling the truth, however, led to the creation of a health care team that works together to solve the puzzle of CIPN. It is pioneering work, to be sure; my injuries are wily and surprise us with occasional flare ups. Yet in only a few short months, my health is improving. Pain levels are dropping; I have greater joy in my life.

I am not cured. But as the physical pain is tamed, I have discovered a different kind of healing in mind and spirit that will allow me to rebuild a beautiful new life. The first step was letting go. As Eckhart Tolle says, what one accepts, one can move beyond, and, “This is a miracle. What you fight, you are stuck with.”

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Did you know there are 3.1 million breast cancer survivors in the United States? Many of the survivors are left with scars due to mastectomies. Physical appearance has a huge impact on self-esteem in complex ways. We all want to believe we don’t care how people think of us,  but often that is not the reality. Many women want to feel beautiful and might work hard to be beautiful. But when you hear a breast cancer diagnosis, many of us feel concerned about our life, our families and our physical appearance.

After having a biopsy, I had a scar and thought I could live with that scar with no problem. I didn’t like having scars, but having my life was more important. Then I received the news that I had breast cancer and needed a lumpectomy. A lumpectomy takes a portion of your breast tissue out leaving your breast with less mass and more scars. The scars after a lumpectomy are more noticeable than those from a biopsy.

I looked down at myself and wasn’t happy with how I looked. Spring time was just around the corner and then summer. As petty as it might sound, all I could think of was tank tops, bikinis and how I would look like in my summer dresses. Little did I know that by then, my natural breasts wouldn’t be a part of me. I needed a mastectomy and had reconstruction completed immediately afterwards. Yes, more scars and no nipples, but I’m certainly glad to be alive and healthy today.

When I look in the mirror, I see the mark of cancer. It’s foreign and holds bad memories. More and more women are getting tattoos after having mastectomies. Why would you want to go through more pain and the hassle of a tattoo? After a mastectomy, skin tissue can be left numb, so getting a tattoo can be pain-free or less painful for some. Breast cancer may narrow our options in appearance, but in my opinion, being able to choose a tattoo and how exactly you want to look can bring the power back to the woman.

The organization called P-ink helps women find the right tattoo artist in their area to give them a tattoo over their mastectomy scar. Tattoos give the power and choice back to the women instead of cancer leaving the last devastating mark on their body. P-ink is an all volunteer organization that is available to serve breast cancer survivors to feel beautiful inside and out.

What started out as a small organization to help women, quickly turned into a movement that has helped women from all over the country. P-ink Day started in Brooklyn in 2013 with the help of crowd funding, where 10 women with mastectomy scars were able to have tattoos completed by talented tattoo artists. From there, in 2015, 45 women were able to get their tattoos.

Personally, I live with my scars, but I’m seriously starting to consider getting a mastectomy tattoo. Why should breast cancer have the last mark on my body?

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I’m at day 15. My chemotherapy began two weeks ago, thus today is “day 15” after that initial infusion. Two weeks ago, I was told that my hair could begin falling out after day 14. So today, day 15, I’m on Hair Watch.

I’ve been babying my hair. I played with my mother’s dolls when I was young, and now I’m treating my own hair as gently as I once did those dolls’ hair. I’ve been brushing it so gently and carefully. And washing it so gently and carefully.

But, it’s going to come out.

I’m getting one of the taxane drugs in my “chemo cocktail”: Taxol. These taxane drugs are really terrific at fighting breast cancer, but also good at killing off all the hair on my body. The only difficult hair loss will be of that on my head.

I know it can be hard for all women when the chemo does this to their hair. It’s odd evidence of belonging to a sort of cancer sorority. Losing my hair is difficult because, in terms of physical assets, I believe it’s my best asset. I have thick, quite nice hair. What will I look like without my best asset?

And I could have tried to save it. Some women try to retain their hair during chemo and use a cold treatment, wearing caps containing dry ice packs during treatments. It is expensive: you must rent the equipment and hire a specialist to change the dry ice packs repeatedly. But I chose not to use this process because I learned it requires sitting in place for eight hours. I can barely sit still for the two- to three-hour duration of my infusion. So, I had an option of potentially keeping my hair, and I knowingly chose not to take it. It was helpful to know the option was there.

In the meantime, I’m armed with lots of camouflage: I have scarves, ball caps, hats (some from a particularly thoughtful friend) and a wig. My best-hairdresser-on-planet-Earth took me wig-shopping last week. He thought we should get that task out of the way before I actually needed the wig. I chose the wig that was closest to my present hair color and style. If I get another wig, I may be more adventurous. We’ll see.

Today I’ve washed and am air-drying my hair. (Remember, I’m babying it!) But, when my hair is dry, I think I’m going to run some errands while my hair seems rooted to my head.

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Chemotherapy was the first intervention chosen to treat my breast cancer, given the size of the tumor and the fact that I had triple negative breast cancer (TNBC). TNBC is the catch-all category of breast cancer that is not fed by estrogen, progesterone or the HER2 protein. Scientists are working hard to develop targeted therapies for this type of breast cancer; however, they believe that there are actually multiple forms of breast cancer that fall under it, which makes it more difficult to treat. Therefore, chemotherapy is often recommended first so that the oncologists can see if it is effectively killing the cancer.

To be prepared for chemo, I had a port surgically placed to protect my veins from the 5 months of poison I was going to receive. My port was a blessing because it eased the anxiety and pain from all of the needle sticks, but it terrified me because one of the risks was it could carry an infection straight to my heart. Having to make such enormous medical decisions in the chaos of the diagnosing phase is so representative of the challenges one faces after being told you have a life-threatening condition. TNBC is a very aggressive form of cancer, and mine was locally advanced, so there was no luxury of time for decision-making.

Once treatment had ended, I turned to art to process the experience. I had all of these breast casts that we had done prior to surgery, and on the anniversary of my first chemo treatment (which coincidentally was also my wedding anniversary), I sat down and processed the experience on the cast. Instinctively, I knew what I wanted to do, and as I worked lines of poetry emerged that validated my emotional needs in that moment. It came first in Spanish, and then I translated it for the cast. “Oh Red Devil (nickname for one of my chemos), I am here on my knees, please save my life, because I am not done yet, I have work and purpose still.”

It’s normal to fear that dipping into a painful memory will make it worse, but this rarely is the outcome. In fact, the externalizing of our pain onto paper is tremendously relieving as we are carrying the memory within our body, mind and spirit. Kind of similar to making a shopping list – once you have it on paper you no longer have to worry that you will forget what you need.

Additionally, witnessing your experience in a tangible, visible form is self-validating, which is an important component of healing. Our feelings are messengers – they need an audience that is listening. When we are compassionate and accepting of them, they feel satisfied that their work is done and they fade away. Experiences that are complicated often bring out conflicting feelings and needs, and they may need repeated audiences with us in order to feel heard, especially if we have developed the habit of banishing or repressing them.

When we practice expressing our thoughts and feelings through process art, we can gain a deeper experience of listening to them as well as understanding them because they are no longer running around in circles in our head if we are placing them on paper. I have experienced and witnessed many “a-ha” moments from process art making; in fact, they often come faster and more frequently through art because of the benefit of gaining distance visually from our internal struggle.

After I had completed my chemo cast, I left it alone for several months. An opportunity arose for me to tell my treatment story through art, and I pulled it out to spend some time reflecting about that experience. The words poured easily out of me and I wrote a few poems. Here is one below:

Chemo

The battle to kill the cancer

Feels like a death march of self

Wondering which cells are going to outlast the other

Each week we measure

Making sure the damage is not irreversible

Holding our breaths to see if

The medicine that kills

Is killing effectively.

My body grows more tired with each round

I cling on to whatever normalcy I can muster

My onc must have nerves of steel and deep conviction in the treatment

For to observe this battle, day in and day out

Must be brutal

Come , she says,

This will soon be over

And then you can rest.

This post originally appeared on Creative Transformations.

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