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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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Thinkstock Image By: RossHelen

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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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If you know someone who has breast cancer or even is a breast cancer survivor, you might be deciding what would be a good gift to buy them. I complied a list of ideas that I think will hopefully inspire you to find the right gift for your family member or friend. But remember to keep in mind their personality before everything else as you pick their gift.

1. Comfy clothes are a great idea for someone recovering or undergoing breast cancer treatment. Big hoodies and flannel button-down fashionable pajamas are welcome. Fuzzy warm socks are also great.

2. Moisturizers are a good gift idea because treatments can leave skin dry and itchy. Having a good moisturizer can make all the difference in the world.

3. A kindle is an excellent present for someone undergoing treatment or recovering. Reading is a great distraction from upcoming appointments, procedures and tests. Kindles are also small enough to fit in a purse or bag to transport.

4. Word search books, crossword puzzles or any games that can be used for fun and as a distraction.

5. Candles and candle holders are welcome.  Nothing like a beautiful smelling candle to have in your room when you are trying to relax and heal.

6. Gift cards to grocery stores or any store for that matter just to help take some financial burden off the family. Cancer isn’t only miserable but also terribly expensive so any help is appreciated. Speaking of gift cards, gift cards to clothing stores are excellent because clothing doesn’t always fit or feel the same as it did prior a mastectomy or double mastectomy.

7. Home made gift certificates offering your assistance in services such as cleaning the house, cooking, gardening, help with child care, help with pet care, running errands and such will be a welcome help. No one likes asking for help so having these home made offers relieves stress.

8. Heating pads and blankets are appreciated especially as we approach the winter months. When I recovered, I relaxed on a recliner, and wrapping in a blanket helped me feel even more comfortable.

9. Inspirational breast cancer awareness ornaments, cups, shirts, earrings and just about anything is good for a breast cancer survivor. As I was going through cancer treatments, I didn’t appreciate the pink ribbon as I do now. Now when I look at breast cancer awareness merchandise, I don’t get a pit in my stomach. I look at it and actually smile that I had cancer, went through it and am still here.

10. iTunes gift cards and anything with music can help the survivor or the person going through breast cancer. Music carried me through just about all the seasons of cancer. Songs helped me through finding out, biopsies, lumpectomy to mastectomy. When I hear certain songs, I have a memory attached to the song. I will always carry these memories with strength.

11. A day at the spa to get a massage, nails done and whatever else to make them feel wonderful makes a terrific gift.

12. For women and men dealing with cancer, adventures and helping them do things that they have never done before. A chance to drive a sports car, amusement parks, the beach and whatever they wish to experience is so important.

13. Movie gift cards are fun and a well-needed distraction.

14. Hugs and visitors from family and friends are unmeasurable. Knowing you are not alone and people have your back can lift your spirits and hope.

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Thinkstock photo by joingate


“Your grandma is headed to the ER. The doctor called and told her she needs emergency spine surgery,” my mom told me.

The next day, my grandma had fast-growing masses removed from her spine, and she was diagnosed with breast cancer for the third time. In addition, a rod was surgically added to her back as the cancer cells had been eating her spine — and once the masses were out, she would need that extra support. Once her surgery was complete, her doctors told us that because of the location of the masses, had she come in a day or two later, she could have been paralyzed. Since her surgery, she’s been in and out of the hospital three times, and radiation was put on hold.

… And this all started a month ago.

Thinking about the last 31 days, I can’t help but think about my family’s current journey — both the moments of fear and the beautiful moments. As I think about these beautiful moments, I can’t help but see and feel love.

Here are eight lessons I’ve learned about love on our journey. While I already knew many of these things listed, they’ve been highlighted again and again throughout the last few weeks.

1. Love is patient.

There’s so much patience that comes with love. With my grandma’s illness and surgeries, love meant taking one day at a time, one moment at a time. It’s about rearranging furniture in the house so it’s easier for my grandma to get around. It’s about creating a schedule for family members to rotate during the nights she was in the hospital.

2. Love is kind.

So much kindness has been shown to my family since this journey began. People have gone to visit my grandmother at the hospital and at her home. They’ve made meal after meal and have even helped with some house duties when needed. We’ve even received messages from people around the world, just to let us know they were praying for my grandma and our family. Kindness hasn’t been shy.

3. Love is more than skin deep.

It may be cliché to say, but I believe beauty is ever-changing, as are our bodies. Love is loving your spouse when you meet them — and when weight is added after her child-rearing years. Love is loving your spouse when she ages and permanent creases are added from laughter to her once-smooth skin. Love is loving your spouse when cancer takes over and scars are added from life-saving surgeries and permanent reminders of time spent in radiation are tattooed onto her skin.

4. Love is laughter.

In the midst of the struggle, there have been many moments of laughter in the mix. My family members are naturals at finding the light in the darkness, laughter being one way. During my grandmother’s six-hour surgery, I may have offered to teach my 75-year-old grandpa to “whip” and “nae nae” in the waiting room… And he may have accepted the offer.

5. Love is thinking of others.

The day after my grandma’s major spine surgery, she was on a ton of medications, and she was on a mission: to find me a husband. The poor men who entered the room had no chance. As they walked into her room, she would say, “My granddaughter, Crystal, was on the front page of the Fresno Bee yesterday. Are you married? She’s looking for a husband.” (Teamwork makes the dream work? Ha!)

6. Love is creative.

A few weeks after my grandma’s surgery, many of my family members left town. She seemed to be in the clear and out of danger, and my grandparents insisted we go on our previously scheduled trips. One aunt went to a work event, the rest of us headed to my grandpa’s family reunion in Florida. Yet halfway into our drive to Florida (from California), my mother received a call. Grandma was put back into the hospital. We hated to not be home while she was hospitalized, but they insisted we continue on. It was important to them that we were at the reunion when they couldn’t be. And during the reunion? The most precious thing took place. All of my grandpa’s eight siblings sat together and brought them to the reunion via FaceTime. Everyone was crying by the end of the call, but hospital or not — grandma and grandpa were going to be at the reunion. (Mom and I also brought 36 pounds of frozen boiled peanuts home so they could also enjoy one of their favorite southern foods.)

7. Love can be scary.

Loving another human being can be terrifying — regardless if they’re a family member or friend. Loving them means you care about them, and when the hardships come? When cancer diagnoses are made and emergency surgeries are unexpectedly added to your calendar — it can be scary, and you can’t imagine life without those special people in your life.

8. Love is worth it.

As scary as loving another human can be, it is so worth it. Love means you’re never alone, that someone is there for you in both the good times and the bad. Love means you have others on your team, rooting for you through all the moments that come your way. It means having a grandma who wants you to find a loving spouse when you’re single, because she wants you to experience the kind of love and joy she’s had for nearly 57 years of her life. It’s having people you can call or text at midnight when you are on the brink of tears, knowing they’re there for you regardless. Loving other people can create memories, happiness, and an extra special adventure. Love is scary… But it is so worth it, and life would be lonely without it.

Image via Thinkstock.

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The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

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