III. The Prognosis

 

IMMEDIATELY FOLLOWING THE PET SCAN, we headed up to the medical oncologist’s office for the results. As we entered his office, Dr. R was scrolling through the imagery. A vague outline of a human body pulsed with firey hotspots on the screen. My mom and I were both on high-alert bracing ourselves for the worst. Our eyes were glued to the screen. Time was standing still. How bad is it? We just wanted the news — and preferably right now.

 

“I’ve never seen anything like this…

I’ve just never seen anything like this,”

Dr. R kept saying repeatedly.

 

Talk about pure panic. What does he mean he’s never seen anything like this?! From our research, we knew that the lungs were the most vulnerable second home for this type of cancer. From the image on screen, my lungs were on fire. The tumor’s proximity to my axillary lymph nodes and lungs was nothing short of a 3-bell alarm. Overall, there’s a 50/50 chance synovial sarcomas will metastasize, especially if the tumor is greater than 5 cm in diameter. I was very familiar with the grading and staging charts on the American Cancer Society’s website. For better or worse (probably worse), I committed the prognoses and survival rates at each stage to memory. I also knew that metastatic cancer, especially in the lungs, is a whole different [and deadly] ballgame. My mind was racing. That firey figure on screen was alarming. Please just tell me the news.


he hard truth about survival rates is that you’re only one person—for you, it’s either 0 or 100. You’ll either die from this condition or you’ll live beyond it. Regardless, I felt that immediate urgency to live. To make the most of the time I have. What if I only have x months or years left? This sort of news is a sobering reality check on your ambitions, your relationships, your mortality, on what really matters. How will people remember me? How should I make the most of my energy between appointments, treatment, and recovery? It is almost as if a new filter has been placed on every thought, moment, action, and decision pre- and post-news. To me, it was like time divided and I’m forever living in the A.D. [After Diagnosis] with a whole new testament on things.

But not everything is so black and white. In this time between the diagnosis [maybe even a little before that] and the prognosis I was stuck in this disorienting period I had come to know quite well as The Waiting Game. Let’s be real, no one likes to play The Waiting Game. In this instance, it was delivered to me as a zombie-like state of restlessness nearing total panic; a coming to terms with my potential fate, trying to forget the regretful coulda-woulda-shouldas, and taking stock of my goals to move forward despite the outcome.

I was no rookie to the Bad News Bears. The years that preceded this moment had its fair share of ups and downs. In a few words: dream jobs, hard work, layoffs, anxiety, etc. Decidedly making lemonade, I avoided the debilitating anxiety my second time around and took a year-long sabbatical from NYC with my would’ve-been roommate. P.S. I highly recommend this move if you can swing it. Six months of bucket list, cross counrty road-tripping does wonders for the soul. I’m beginning to believe that sitting shotgun staring out the window for eight hours a day had a way of being incredibly therapuetic: both intensely reflective and effectively (and unknowingly) preparing me for the journey ahead.


The official report hadn’t come in, but Dr. R gave his take: it was Stage IIa. Best case scenario for a high-grade tumor. The mass was encapsulated and, thankfully, not showing up anywhere else. It was still (slightly) under 5 cm, shaped and sized like a small egg, and wedged between my humeral head and left shoulder blade. There were tears of great relief. We were under the key 5 cm benchmarker; chemo seemed to be off the table.

Conversation turned towards next steps, and he immediately gave The Treatment Plan: double doses of chemo [a combo of ifosfomide, doxorubicin, and platinum] with concurrent neoadjuvant radiation to boost the chemo’s effects. Surgery would follow. What do they mean by double doses? …The PICC line would go in two days from now, and treatment would start within the week… Within the week?

I could feel my pupils dilating and the rush of adrenaline. Fight or flight in full force. I hadn’t eaten since midnight, and this news had me even more lightheaded. My mom was asking questions, tears welling up, I couldn’t look at her without us both losing it. I ate a container of blackberries trying to prevent everything from swirling around me. Just focusing on the juiciness of the fruit. Staring at the filing cabinet in the corner of the office. Savoring the sweet tartness of the blackberries between my lips. My last snack was 12 hours ago—what a difference from then to now. Thankfully, the kick of sugar was keeping me from blacking out.

 

Their words were just flying by as

I tried to focus and listen.

 

…Shave my head this Friday, start treatment on Monday… 4- to 8-hour infusions, five days a week… Three weeks on/one week off for the next three months… Daily blood work… But summer was my favorite time of year, a celebratory season, I had a Paris vacation on the books a month from now—perfectly scheduled to coincide with my 29th birthday and Bastille Day …And surgery 3 to 6 months after the skin heals from radiation. The weeks and months and years were flying by in my head. I need a calendar and a strong cocktail stat …Impacts on my liver, my brain function, cardiac failure, tastebuds… What levels of toxicity were we talking about? …My heart, my brain, my fertility, my eyelashes, my fingernails… How long before my hair would grow back? I’m not even dating anyone … What about marriage and kids? …Would I ever be able to have kids? How will I ever get back to dating again? …Some people work a little through treatment, others take off…Work? Who can even think about work right now? Suddenly I felt like my thirties had right blown by and I was still waiting for life to start.

 

I don’t know who took the news better.

 

Maybe I had braced myself with my deep dives of research and reading, or maybe as a medical professional, my mom understood the realities more than me. What happened to the positive news at the beginning of our conversation? The thought of starting chemo within the week seemed really rushed given the staging. Was this treatment plan standard protocol for all sarcoma centers? Second and third opinions would definitely be in order.

With tissues and notes in hand, we picked our emotionally and physically exhausted selves up off the uncomfortable chairs and wiped away the lingering tears in our eyes. The Waiting Game was over. There was no time to waste, we had a full day of appointments and research ahead.