On June 27, 2012 my world changed forever, when I heard the words, “you have cancer”. A pesky lump that had been growing in my toosh and that was removed a couple weeks earlier, turned out to be sarcoma. You don’t want to Google if you ever get this, because you think you will surely be dying soon. I remember waiting in the doctor’s office for my follow up surgery appointment, expecting the doctor to come in and just check the incision, tell me everything looked good, and then I’d hop back on my bike and go to work. But when the doctor came in, I could tell right away something wasn’t right.
Wait. What? My eyes start flooding tears as I try to speak and make sense of what she just said. I’m a crazy strong person and I can bottle my emotions too well, but I don’t know what’s happening right now. I am 33 years old, lean, healthy, an outdoor-loving, field-workin biologist with a non-profit I just started with a friend and we’re killin it. I am so active and strong. I eat well, I’ve never been on any medication or had any health problems in the past. What the HELL. I call my husband and just say something like, “You have to come here now, that butt lump was cancer. I don’t know what’s going on.”
He shows up and a few tests go on that day, blood work, and a CAT scan. We go home and wait for the results. We’re in shock, silent, not really knowing what to say or do. I had to go to the farm that evening to do some things, so Mike comes with me as we silently work, tears in our eyes, waiting for further news. She finally calls when we get home to share good news: it hasn’t spread anywhere that they can see! Whew. It’s localized, it will be ok and I just need to get another surgery to scoop out more tissue, making sure they get all the cancer and the margins are clear. What a relief.
What ensues over time is this, in a nutshell. I have the second surgery, but afterward they are not happy with the margins, saying the cancer was too close to the edge despite what looked like a good job in the surgery room, but upon microscopic examination did not look as they’d hoped. So they suggest radiation. 6 rounds of radiation to the butt area. I go into it. I am still kind of in denial honestly, and not feeling all that scared anymore because it’s localized. We’re gonna get it.
I continue my crazy busy life of working my day job at UF as a field biologist, while pursing my non-profit work after hours. I am pretty much rushing into the hospital every day of the week for a few weeks to get my butt area zapped, not really letting it sink in what’s happening and why I’m there.
I’ve gotten over any embarrassment as pretty much everyone involved in my case has seen my cute behind that is slowly getting mangled. I finish my last treatment on Halloween. The nurses think I’m nuts that I’m still riding my bike. Only at the very end of the treatment is it starting to feel sunburned and sore and I decide take it easy. I’m also completely exhausted. The radiated area is starting to feel bad, as I was warned it would be. It has a cumulative effect, so by the end I feel a fatigue that is not fixed by sleep or rest. The scar tissue is getting unbelievably large and sore. I start seeing a wonderful physical therapist who shows me some things that help alleviate the discomfort.
A scan after radiation is over shows there’s a mystery nodule that they suspect is cancer. Jeez. So they cut me open again this time to really take a chunk out of me, fat and muscle this time. The surgery is pretty invasive and hurts like crazy for the first few days, but I only rely on pain pills for a short while. I can’t stand the sedentary mode, and start moving around with quite the limp. I can’t sit right for awhile. When I finally take the bandages off, for the first time in my life I almost want to faint when I see how bad it looks. I have a strong stomach and tolerance for gross things, but this took my breath away.
Three months later I get a follow up scan. Mike is with me and we are both a little impatient. It’s the last appointment of the day and it’s taking the doctor forever to see us. I have a bad feeling, but don’t say so to Mike who is getting antsy to get going. The doctor comes in to tell us that the dragon is back. This time it’s travelled to my lungs and there are multiple spots. It’s really bad now, no more denial. We discuss options, and I am disheartened at her inability to tell me what lies ahead. She really doesn’t know. Sarcomas are capricious.
My only option now is chemotherapy since the cancer is no longer localized and could be traveling to other places too. As far as metastases go, travel to the lungs is the most preferable and treatable. When they get to kidneys, lymph nodes, liver, and other vital organs it can be awful. But still, a traveling sarcoma to the lungs is no joke.
I remember being up on the roof top where we parked at the end of the appointment, unable to see because there were so many tears flooding out. We drove home and cried together on the couch, not knowing what was next. Was I going to die? Was this about to be a long and difficult battle? I just didn’t know.
I did what everyone probably does, and tortured myself for a few days doing all kinds of research on sarcoma. The problem with mine is that despite the fanciest tests available, they were never able to exactly pinpoint what kind of sarcoma. Although I don’t even know if that would have mattered. Sarcoma is rare enough and so under-studied compared to things like breast cancer, that we are basically guinea pigs. A lot of sarcoma patients end up in clinical trials for new treatments.
I decided to transfer to the Mayo Clinic for a multitude of reasons I won’t get into, suffice it to say that I was no longer happy with the coordinated care at Shands. Besides, this was serious now and I needed an expert. The closest sarcoma specialist was at the Mayo Clinic in Jacksonville, only 1.5 hours away.
I ended up in a clinical trial but was in the control arm, so I got the standard drug, doxorubicin. Luckily for me, it was only one drug as opposed to FIVE that Shands doctors suggested. One drug seemed like the best option, I was still very healthy and had a strong body that could help support me through this. Five drugs may have nearly killed me, while also trying to kill the cancer. Six rounds of doxorubicin every three weeks was what the doctor ordered. Each treatment made me feel progressively worse and my hair fell out early on. Although I felt icky, for the most part I was still active, and able to do a lot of things. I still went to the farm in the heat of a Florida summer and worked. Not as much as I could normally handle, but still.
Speaking of work, when I got the “your cancer has metastasized” news, the high speed train that was my life came to a screeching halt. I had to leave my biology job at UF because I felt I had two choices for spending my energy career-wise. My UF job as a biologist or, my new found career with my non-profit Forage (now Working Food) which till now I had only been doing evenings and weekends. I chose Forage. It was my baby and if I only had limited time and energy, that had to be it. Luckily my UF co-workers and supervisors are practically family after so many years, and understood. We worked together to find a replacement for me that I trained in a couple weeks before leaving. They even found it in their hearts and budgets to pay me for several months, even though I was no longer working for them. Things couldn’t have worked out better for me on that end. I am eternally grateful for their kindness.
My new job was to be thoroughly selfish in my mental and physical care moving forward. More yoga, more exploration of meditation, massage, and other things that could help get my head and heart around this. More rest, more walks in the woods, more reading, more time preparing better meals, and spending time investigating what other things I could be doing to better myself. This is where I started to really learn about complementary care. Not woo-woo magical cures, but some really promising things. It is my firm belief, that in addition to the chemo poison that killed my cancer, these other practices I implemented also had an impact on my ultimate remission.
On July 30, 2013 I completed my last round of chemo. Each and every scan I’ve had since then has come back negative.
4 Comments Add yours
Thank you for sharing your story. I’m so glad we still have you with us.
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Thanks for sharing! I didn’t know the details. Wow, that was a lot your went through….so glad they got it all and you continue w/ negative scans!!
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An amazing, powerful story. I am so glad that you are well and I look forward to meeting you at Oak Springs in the summer 🙂
Thank you! I am SO EXCITED!!! I look forward to meeting you too!