Gravity

[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another  woman whose [Surviving Cancer.] [Absolute Reality.]  looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t  know that no  reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B?   When I  met Toni at the Cincinnati Exhibition I produced in 2011,  she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story and to share it here.  Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. Here is the first of two parts.]

Toni G

Guest Post by SCAR girl Toni G.

I was sitting in a tent at Zion National Park when I got the news. The voice of the surgeon who had biopsied a mass in my breast the week before came through my cell phone: “We need to talk”. My heart sank.

I had breast cancer. I was 28 years old.

I’d already planned out my vacation to Utah for the spring of 2007 to celebrate passing the doctoral candidacy exam—a feat that would allow me to continue pursuing my Ph.D. in Molecular Biology and Biochemistry. But  experiments didn’t cooperate, and I’d had to postpone the exam and take my “celebratory” vacation before I even answered one question.

And now this woman was on the phone saying words horribly foreign to me. ER+/PR-/Her2-. Grade 2. BRCA1/2-. Two IDC tumors measuring 3 and 5 cm.

More unfamiliar terms followed as she proceeded to tell me the course of treatment. I sat in silence while she described, in what seemed like one breath, oncologists, mastectomy, chemotherapy. When she spoke the word radiation I finally lost it.

My space-time continuum had just been warped by the gravity of cancer.

She wanted me to see an oncologist that day, but I was 1500 miles from home and a week away from my return flight. I told her I couldn’t that day. Or the next few. I had rented canyoneering equipment for the day and had miles of hiking to look forward to. I would be home in a week. I didn’t call my family. I couldn’t bear to tell them the heaviest news of my life over the phone.

The one phone call I did make was to the chair of my committee. My candidacy exam would have to be further postponed. It turns out, indefinitely—but that’s another blog.

The months following diagnosis were surreal. I’d become so used to people telling me that 20-somethings don’t get breast cancer that I found it hard to believe I actually did.

When I was 20, I found a lump in my breast. My surgeon insisted it was a cyst. No tests? No biopsies? Nope. When the pathology came back benign, I sensed an “I told you so.” He told me that even if I discovered more cysts in the future, I wouldn’t have to have them removed. “They’re normal,” he said.

“They’re normal,” I thought eight years later as I stood naked in front of the mirror slowly tilting my head and squinting. My left nipple looked odd and had gone flat. My gynecologist thought the scar tissue from my cyst removal was causing it. She never mentioned the words breast cancer.

Over the next few months I began to feel a mass in the same breast. I called my gynecologist’s office again and was told to call back in six months to follow up. I convinced myself it was just another one of those normal cysts. So I didn’t worry—for seven long months.
By then, the two masses in my breast were causing sharp shooting pains across my chest. The (finally) worried gynecologist ordered a biopsy.

And then I was in Utah, sitting in a tent…

When I did finally go home and called a family meeting, Dad was giddy. “You’re getting married!?” No, Dad. “You’re having a baby!?” No, that’s not it either. It made the truth more crushing.

My oncologist started me on chemotherapy immediately because the tumors were so large. He ordered a CT scan that came back with abnormal spots in my femur and four places in my spine. After a follow up PET-CT scan, I received a second blow. The spots were metastasized breast cancer.

I was now stage four.

I wasn’t concerned at first. My ignorance of metastatic breast cancer shielded me. But after a week of reading through scientific literature, I found myself shutting my laptop every night in tears, unable to handle any more statistics. Based on my research, I knew I only had a 25 percent chance of being alive in five years.

My oncologist said nothing had changed—not our treatment strategy or my life expectancy. I knew then I had to change oncologists. My life depended on it.

I found my second oncologist at MD Anderson. She cited current literature and was willing to be as aggressive as I wanted with my treatments. She understood my drive to do absolutely everything I could to get rid of the beast that was trying to pull me down.

“Absolutely everything” turned out to be the hardest experiment of my life. Seven months of chemotherapy, a bilateral mastectomy, a clinical trial with high dose chemotherapy and stem cell transplant, and six weeks of skin-scorching radiation to top it off.

It worked. I was declared to have “no evidence of disease”!

Just one week after I finished my treatment, I hiked to the top of the Continental Divide in Colorado. After hours of plodding through the snow and a chance encounter with a majestic mountain goat, I found myself sitting at the top of the mountain. Bald and burned and brave. I had defied gravity. I had defied cancer!

Toni Hiking

[All this defying of cancer and, most likely, more gravity as well, will be continued in Part 2 of Toni's SCAR story, in which she considers the geography of cancer.]

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About joulesevans

Occasionally radioactive with a chance of superpowers. I use them to fight cancer. Also I write. My book Shaken Not Stirred...a Chemo Cocktail is available on Amazon and Kindle. Currently I am working with David Jay as The SCAR Project Exhibition Consultant & Social Media Manager.

9 responses to “Gravity”

  1. helensamia says :

    Thank you for sharing this …

  2. Teppi says :

    Doctors will never know more than your gut can tell you. I am saddened that you had such poor treatment when you could have caught everything so much earlier. I had BC 10 years ago at 45; recently I went to my onc to tell her I felt like something was wrong. I didn’t feel anything and neither did she but I insisted I get my mammogram early. I just had a lumpectomy last week – I had another tumor. I also was shocked to find out about BRCA testing and that she had NEVER recommended it. (I am a textbook case) Sure enough I carry the BRCA1 mutation. I pray that you stay disease free and live your live as it was meant to live. God bless you for fighting and winning.

  3. Lauren says :

    I met Toni in Cincinnati also. Her story is amazing. I’m interested in more information on her stem cell transplant as treatment. Following breast cancer but unrelated I was diagnosed with leukemia (ALL) and I received a bone marrow transplant in January. I am currently in remission. Looking forward to more of this blog!

  4. ClaireElaine Johnson says :

    Thank you for sharing. My mother died last October of breast cancer that had metastasized into her lungs, and finally her brain. She was 47 when she died, and she had fought for five years. She had a lump in her breast pretty much since they were formed, and the doctor said it was a cyst, and didn’t even biopsy it. She didn’t even know to get it re-checked until her nipple started bleeding.

    Thank you for sharing your story.

  5. Denise vonMillanich says :

    Thank you sharing your story Toni! I lost my beautiful daughter Jolene at 25 in 2011.Joey’s started out as breast cancer. You are so blessed and fortunate that you have arrived on the other side of your cancer. These doctors neglect patients much too often. And the end results can be so tragic. May you have a long and happy life. XOXO MamaBear

  6. Nancy K White says :

    Thank you for your story, I’m a stage 4 breast cancer survior. I was diagnosed Dec 29th 2007, I think it was. It advanced to my bones but I’m still very much alive ….loving life, God and my wonderful husband, friends and family I count my cancer as a blessing for it opened up my eyes to what in this world is truly important. God Bless you <3

  7. Krissy (@PrettywithaScar) says :

    Beautiful post. It takes alot of strength to post pictures of your scar no matter where it is. I also have a scar but on my face. I’ve had 11 surgeries and my scar still shows on my chin. It’s been a long ordeal, but I have learned to be okay with it. Follow my journey from everything about scars, treatments, dating, relationships, weight, spirituality, death, miracles, failure, strength, events, design, parties, life of luxury, finding the beauty in simplicity, and so much more on http://www.prettywithascar.com. Thanks again for sharing!

  8. Ricardo L. Rodriguez says :

    I am a 58 yo Plastic Surgeon who found my way here thru “The Scar Project”. My interest stemmed form the fact that you had elected NOT to reconstruct. A choice which I unreservedly applaud you for as courageous and majestic.
    I would like to add a little piece of knowledge. If the effects of the radiation are a problem (about 40% of cases), there is a solution now. Fat grafting or stem cells are extremely effective in reversing radiation damage.

  9. Frank3d says :

    I just happened upon this blog while searching for black & white photographs. I haven’t even read the text yet, but must say that this woman strikes me as absolutely brave and beautiful! This underscores for me the fact that women’s beauty goes so far beyond the side of their breasts, etc.. I applaud the women, and men, who are participating, and sharing of themselves in this way. Thank you, very much. :)

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