[So. Many. People. ask me about the girl in this breathtakingly beautiful Indian woman SCAR portrait. My girl Sona. I met Sona at The SCAR Project Cincinnati Exhibit in 2011. This was a pretty epic exhibit, with about 20 of the SCAR girls coming to my town. First of all, it was the first time SCAR exhibited outside NYC. Secondly, it was when some kind of superglue bond between the SCAR girls happened. When Sona arrived in Cincy in 2011, we rented a motorized wheelchair for her, as not being able to walk was one of the side effects she was dealing with, from chemo. In 2013, Sona came back to Cincy, this time for our Cincinnati SCAR sister Vanessa Tiemeier’s celebration of life. But this time, she walked off the plane. That’s how they roll, showing up for one another like that. It’s been one of the blessings of my life to witness. Just like my sweet Sona Sunflower.]
Guest Post by SCAR Girl Sona
Cancer 1.0 (Sona ~ 19 years old.)
The first time I had cancer, I never knew. I had not been told those words that I’ve gotten numb to hearing all these years later. I was 19 years old and a freshman at NYU. I had a double major and double minor, which didn’t leave me time for a double mastectomy. I was touching every area of interest in my studies and my lifestyle. MY whole life was ahead of me. Pain in my breasts had led the doctor to find lumps. Three to be exact. I spent Valentine’s Day that year lamenting that I was having three lumpectomies done. Two on the left side, one on the right. “Fibroadenomas,” they said, which begged relief. After all, it “wasn’t” cancer. In those days, they didn’t drop their jaws at things that would be a concern today. What no one told me about was the DCIS (Ductal Carcinoma In Situ) that I found in my operation report 17 years later when I was diagnosed with stage 3 cancer at the age of 36. That’s when I heard the words that stopped me in my tracks. It was as though I had just heard that the field I was running through was filled with landmines. Which it was.
Cancer 2.0 (Sona ~ 36 years old. Sai ~ 2 years old.)
I was married, the mother of a two-year-old son, and smack in the middle of graduate school when I was finally diagnosed with cancer. 17 years. I had already been through enough (or so I had thought), by then. My plate was full—previous breast surgeries, PTSD from being at Ground Zero on 9/11, congenital Ehlers-Danlos Syndrome that had cost me over a dozen various surgeries and procedures, divorcing my soulmate. For dessert, my left breast got 14 cm of cancer that had spread all the way to the axillary lymph nodes. They called it Stage 3 Luminal B (ER+, PR+, HER2-, Kl67 70%). I had DCIS in the right breast.
I was outraged that it hadn’t been caught sooner. Let me backtrack a bit. I had been having trouble for years and it had seemed as though no one was listening to whatever red flags I’d had the courage to wave. Actively nursing, my milk ducts had been getting clogged to the point of having to have them surgically extracted. This is very difficult to do since the nipples don’t have skin over them and therefore cannot be stitched up. It requires pumping and dumping bloody milk for a week as the nipples heal. I had sounded the alarm to my OBGYN and a oncological GYN. No one had said cancer when I was 19, but I had been told to be careful and concerned going forth. My complaints were all brushed aside. Since I had been nursing my son, something I planned to do for 2 years (recommended by WHO), I had been told that once I weaned him, they’d look at it with a mammogram to see what was going on. I didn’t last the two years.
Cancer came in kicking and screaming, knocking my door of self-awareness flat off the hinges. I knew something was wrong. I was in excruciating pain for months. Breasts would fill quickly and get engorged and I’d pump a whopping 10 ounces out of each between feedings! My son was a barracuda and nursed strongly. I thought this might be why I hurt so much. I complained of pain all the time but didn’t have anyone take the complaints seriously. I couldn’t so much as lie on my belly—any pressure on the breasts sent sharp pains like needles through the entirety of my double Ds.
At this point, I moved from Florida to New Jersey to stay with my mom so I could have help with my child while I tried to find out what was going on. My son was two, non-verbal, not potty trained, and would not feed from anything but my breasts. We would later find out that he had classic autism. My husband was not dealing with stress well. I needed reliable help.
It took me six months to be able to see the gynecologist in New Jersey, who then told me not to worry about it. “It’s just connective tissue,” she said. She felt the breasts and was positive it was not cancer and that I did not need a mammogram. On this, my first and last visit to this doctor, I demanded from her a script for a mammogram because NOT ONLY was I in so much pain I could barely handle it, but I was also covered for a baseline at age 35 by my crappy University insurance plan and it would be bad practice for her to deny me a freaking baseline at 36. She consented hesitantly and let it be known that she didn’t care for me getting huffy with her.
Thank God for intuition and the pain that cancer brought because I would never have caught it if I had not been assertive. I was adamantly told it was NOT cancer just by the doctor feeling my breasts confidently, even after hearing about the history I had from age 19. This is what still infuriates me. It could have and should have been caught earlier because even young people get cancer. (Which is what The SCAR Project is all about.) An MRI or Ultrasound could have diagnosed it if the doctors had bothered to give me one in Florida.
Finally, after scans, biopsies, and much worrying, I heard those words on June 13, 2007: “You have cancer.” I opted for the double mastectomy and the TRAM flap reconstruction. I thought it was a natural choice. I had a radial tire going on and who would say no to having that nipped and tucked for the sake of the cancer and reconstruction? You see, a pedicle TRAM flap is where they carve out your breasts from the skin and then move your abdominal muscle into the flap. You end up with 4 of your 6-pack in your boobs, basically. This is a procedure most doctors will not agree to do bilaterally anymore. You will see why.
The surgery took 11.5 hours and involved my surgical oncologist and a plastic surgeon. When it was over, I had blood clots in both my lungs and cancer cells still in the chest wall (which I would find out seven and a half years down the road). The blood clots didn’t kill me but they royally fucked up my reconstruction and I had to have the whole thing redone a year later. I had ten months of open wounds due to the Ehlers Danlos Syndrome the first time around and six months of open wounds after the revision. I spent about 30 months unable to walk without assistance. Immediately after the initial surgery, I had begun six months of chemo and watched my husband relapse into a heroin addiction he had kicked before we had met. I sent him to rehab twice, but when he slit his wrists in our living room while I was out at one of my doctor’s appointments, we parted ways, for all of our sakes and personal battles, and for my son’s safety.
The chemo was difficult. I had allergies to two of the three drugs (Adriamycin, Taxol, and Cytoxan) and had to keep stopping treatments here and there due to my counts going off-the-charts low. It took me six months and I didn’t even finish the Taxol. The neuropathy had reached my face and my lips and I was left speaking as though I had been injected with Novocaine. The Neulasta shots were mind numbingly painful. It made my bone marrow swell, creating pressure from within my bones. All of them. Each injection would be followed by three days of not being able to shower due to the pain of mere water on my skin. During this time, I could not be touched by anyone. I had to take medication to facilitate long bouts of sleep. Simply existing, during that phase of the chemo cycle was the hardest thing I have ever had to do. I would sit and cry, unable to move. My mother would watch, wanting to hug me but knowing it would only make the pain worse. Nothing brought relief except sleep. I was grateful for my education in Psychology, for it was the miracle of a clever cognitive reframe that got me through this time.
I told myself repeatedly (like a mantra) that God was giving me a choice: either I could go through the chemo, or my son would have to. It wasn’t true, of course. It was merely a device that, when used repeatedly, gave me the courage to go get my treatment. Whenever I thought I couldn’t take it anymore, all I had to do was repeat this to myself over and over, and the strength came. There is nothing greater than a Mother’s love. Not even the pain of Neulasta. It’s tools like this that have kept me strong and resilient through the years.
I took Coumadin for two years for the pulmonary emboli. It was a constant reminder of that OTHER brush against death. I was already on borrowed time and lucky to be alive. Once dose-dense chemo was done, I started Arimidex hormone therapy, Lupron monthly chemo, and bi-annual infusions of Aredia. I stayed on this regimen for five years. Turns out I should have never stopped it. That regimen was keeping the cancer that was left in me from growing. Chemo saved my life just as much as it messed it up. I still struggle with neuropathy, pain, issues with the mesh implant from the TRAM flap reconstruction, chemobrain and migraines. I still often need assistance to walk. I own a motorized wheelchair and people who know me and are very used to seeing me in it during my roughest times.
One of the complications from the TRAM flap procedure was requiring a plastic mesh to be placed in my torso. This proved to be a major annoyance to the point of placing me in a wheelchair or walking with assistance at best. I was like that for five years until the chemo all stopped. It took a year after that to build my strength and I did start walking again. I thought the nightmare was over and I could resume life. It had been a horrible five years. I had tried to reconcile with my husband for the sake of our child, which proved to be a bad decision, for he had never truly kicked his drug habit. I was also to find out later he had inflicted unspeakable physical and mental abuse upon our autistic child. I filed for divorce, got a permanent restraining order and bought a condo on the serene and beautiful Florida Intracoastal waterway. I took the time to focus on my child and give him the life we both needed—stress-free, warm, and loving.
I had desperately needed to rebuild my life. I was watching it being done all around me. I had come to know a small sisterhood of other young survivors through my involvement in David Jay’s SCAR Project. This was a healing experience that catapulted me into a network of others just like me who had to survive cancer whilst juggling kids or dating or divorce or grad school or all of the above (as I was). Young adult cancer is not the same thing as your grandmother’s cancer. You’re often the center of the family when you’re young and things fall apart when the center does not hold. Lives are shattered in the wake of cancer. My SCAR sisters were walking this minefield with me and we leaned on each other, sharing all of it: the good and the bad, the lessons, and the funerals. I was doing Reiki, drumming and chanting, and utilizing diet, crystals, oils, herbs, teas, roots, mushrooms, meditations, tarot, massage, and music. I had a whole program of wellness. I was a phoenix rising out of the ashes. I was tickled to have several media folks write articles about my outlook or shoot videos to discuss different things I was doing in recovery (drum circles, dragonboating, etc.). I had become a poster girl for young adults living with cancer.
I did get strong enough to walk on my own, become active with cub scouts, start to let my ministry and spiritual aspirations unfold, and even develop a social life in South Florida. I finished my degree, I sang karaoke, I hung out at the kava bar, I camped with scouts, and I had acquired a nanny which freed me up for lots of “me time” for the first time. I even started dating again.
The Ehlers-Danlos proved to be a nightmare itself whilst I thought I was NED (no evidence of disease), and I at one point ended up in the wheelchair again a year after I had begun walking on my own. I had torn five different ligaments and tendons the first time I attempted water slides since recovery. This was a hard blow. I had fought to get out of the house and have a social life and it seemed like just months into me finally getting my groove back. BAM! Back to being sedentary at home. I fought to get out and forge a social life for myself, despite the wheels. I’d go sing karaoke since music always made me feel better. I’d go have some kava. Being social and falling in love saved me mentally from falling into a depression over my health.
Love went out the door literally however when cancer came back into the picture. To his credit, my boyfriend did try to come back a few days later and repair the relationship, but the decision had already been made. I was moving to New Jersey in the morning to be with my mother. Once again I found myself with someone I could not rely upon. Men who are equipped and willing to embark on a healing journey with their soulmates will forever hold a very special place in my heart because I have spent my life looking for that man. And I end up at my mother’s house every time, dependent upon her to care for my son whilst I buckle up and brace for the fight.
Cancer 3.0 (Sona ~ 44. Sai ~ 9)
So, just as love walked out the door, cancer came in, took his shoes off, and made himself at home.
I was perplexed and angry at first when I heard there was cancer found in a breast that had already been removed. This wasn’t supposed to happen. We get mastectomies SO THAT this doesn’t happen. My oncologist told me with actual tears in his eyes how sorry he was and that there was a less than 1% chance of this happening. It was not common. I was learning that I was pretty much a candidate for all medical weirdness, anomalies, rare adverse effects, and flat out flukes of medical science.
This time around (what I call Cancer 3.0), I had my ovaries removed along with the cancer. It was clear that the hormones were fuel to my tumor. Recovery from this went far better than the previous surgeries. Protocols have also evolved over the last eight years. I have even received the radiation I should have gotten seven years ago. They are learning that in young people, cancer is more aggressive. We are more at risk for recurrence and metastasis. I’ve seen it firsthand. I’ve buried a few of my SCAR Sisters.
I have been living sincerely. I have been using diet, energy work, crystals, oils, natural medicine, meditation, and comedy, adjunctively with surgery and radiation. Cancer has brought many interesting practices into my life: drum circles, Reiki, crystal singing bowls, dragonboating, Jin Shin Jyutsu, Tai Chi, crystals, mantras, Ayahuasca, labyrinths, somatron chairs, play therapy and sand trays, and much more. I even play video games for Cancer 3.0 with storylines involving battling cancer cells. But I am NOT the happy poster child this time. I repressed my anger during Cancer 2.0 and this time I am going to express the full gamut of emotions. None of that “oh, just think positive” shit. Positive thinking and visualizations are awesome and I use them regularly as tools. But growling, releasing anger, and being honest about my experience (no matter what YOU may think of my outbursts) is what needs to be done so that I DON’T suppress it and let it fester below the surface planting seeds for another outbreak. Most importantly is humor. I have learned how to incorporate my twisted humor and have been known to walk around in shirts that say things like: “Cancer— only the pretty people have it.” My handle is “Chemo Kardashian.” I laugh at everything I can think of to laugh at, including myself. People so often comment on how good I look despite what I’ve endured. I’ve used the pop culture reference to the Kardashians to poke fun at the emphasis people put on looks over health.
I’m STILL in the middle of a brutal divorce. Seven years post-separation and I am still mid-litigation! My soon-to-be-ex-husband even petitioned the court to prohibit me from treating my cancer out of state (going so far as to ask for my son to be remanded into foster care until I am better, which thankfully was recognized by the judge as a shitty idea). I deal with this and focus on rest and treatments.
Upon my return to Florida, I was slapped with litigation involving custody issues due to going out of state for treatment. Because of the costs of attorneys, and only having disability income to survive on, I have yet to have follow up scans done. My funds have gone to fighting the litigation and defending my son’s safety. I never thought I’d come across something that cancer had to take a back seat to. Hopefully soon this litigation will end and I can focus on my health. Plus with all I’ve gone through, I want to spend some time enjoying and relishing life. I’m waiting to exhale though, and hoping that rest and true convalescence is just around the corner.