We’ve all watched it, that iconic scene in A League of Their Own where Tom Hanks loses his mind, mouth stuffed to capacity with chewing tobacco. There’s no crying in baseball. THERE’S NO CRYING IN BASEBALL! And that’s how it goes for us sickies. Stiff upper lip and all. We are fighting a battle, of course. We’re soldiers. Or we’re on a journey, something like that. I can never remember how I’m supposed to be doing this.
I traveled to Duke University the other day, roundtrip travel time – five hours. I stopped once each way, at an unassuming rest area that also had a Vietnam veteran’s memorial tucked away in a wooded area just off the onramp. I didn’t have time to visit the memorial as I was on borrowed time going in both directions. Heading northeast, I feared being late for my oncology consult. Heading southwest, I feared getting hopelessly stuck in early afternoon Charlotte traffic.
This was my first ever trip to Durham, to Duke. The ride was decidedly different from that which I had to take to see my former oncologist at University of Miami. Instead of concrete monoliths and bumper to bumper traffic, fearing for my life, I was treated with the delight of row after row of majestic oaks, their leaves just beginning to hint that fall is on its way. There was no stop and go, no middle fingers (mine or otherwise), no frenetic dodging and weaving. But still, there were tears.
When I last saw an oncologist, there was good news, splendid news. My tumor was dead. No more chemo. No more sore feet. No more nausea. No more misery. A brief respite from the constant looming fear that nothing would work for me. There were tears then, too.
The plan was to have an MRI in 6 months and hope the news stayed the same, tumor still dead. In the fury of moving I had to cancel that scheduled appointment. No fear, I would just find a doc up here as soon as we moved. But then, the house didn’t sell and the finances dried up, and finding a doctor that even understood what a desmoid tumor was turned out to be a greater challenge than I had ever anticipated.
Here we are, almost a year later and I haven’t had a scan. There is no guarantee the demon inside my left leg isn’t growing again. The only guarantee a desmoid patient has is that they will forever be wondering if their good news will turn bad or their bad news will turn worse. It is just the nature of this beast. And there will, for sure, be tears.
After going in the wrong direction at least three times, and being herded to and fro by some kind folks, I found my way to the right office. Paperwork, more paperwork, always with the damn paperwork. And then I was called. Weight, height, BMI (just barely squeaked in the healthy range), temperature, blood pressure. Any pain? Any allergies? Any worries? Oh, sister, you don’t know the half of it.
The oncologist I saw is a sarcoma specialist. That’s what a desmoid is, always riding the fence where cancer and benign meet. Desmoid tumors are technically not cancer, as they do not metastasize. They maim, they kill, they can cause a lifetime of grief and pain. They are often treated in just the same way a cancer would be, but they aren’t. That is why you have to find someone who knows them, who understands their underhanded and dastardly makeup. Benign is not always so benign.
After we went over my now almost five year history in great detail, she asked me what I knew about desmoid tumors, what I’ve learned in this time. Desmoids are essentially scar tissue gone mad, surgery is often a last resort, chemo does work on desmoids. We scheduled an MRI, mapped out a plan for if the scan gives us good news and if it doesn’t. When we were all done, there were no more plans to make, no more questions to be asked and answered, that was when I let down my wall because there is crying in desmoids.
I can be stoic and measured when it’s needed. I can relay to you in staccato rhythm all the steps. The biopsy, diagnosis. They surgery. The pain. The physical therapy. The meds, their side effects. The financial destruction. I can give it all to you and never bat an eyelash. But sometimes, sometimes a girl has got to cry and let it all fall down her cheeks, dotting her t-shirt with pain and sadness and relief and worry. There has to be crying in desmoids. There just has to be. There’s too much to keep in.
I cried when we were all done with the important stuff, when I knew she knew what this was. When I knew I had made the right decision to go to Duke. When I knew no matter what the MRI shows, I’m in the right place to take it on. I cried, almost in sobs. I broke down and she asked, is there something else going on or is it just the desmoid?
It’s just the desmoid. No one knows the fear. No one understands.
She nodded and gave me a knowing smile, with just a hint of pain in the eyes. She gets it. She understands. She knows, with desmoid tumors, the worry will last a lifetime. But, there’s a plan in place. There’s a team on standby if that plan doesn’t work out. I’m in the right place, whether I get good news or bad. For a desmoid patient, finding the right place is more than half the battle.
After routine bloodwork, and a mediocre cup of coffee, I meandered a bit following the sound of often misplaced piano notes. I was on the third floor and peered over a beautiful wood railing to see someone sitting at the bench. His phone, papers, and ID tag placed above the keyboard. He was likely an employee with a smattering of piano experience that sat down to see what songs he could remember off the top of his head. Imagine, John Lennon. He stumbled here and there, but it was lovely just the same. On the floor next to the piano, this:
There is crying in desmoids, but it’s not all bad. I am afraid. I am. I can’t get around that. No matter how many jokes I crack. No matter how strong I may seem, deep down is a quivering mess wiping snot on her sleeve. I’m afraid, but I’m hopeful. I’m thankful. I’m relieved. I’m ready. If that scan is good, great. If it’s not, ok. If it’s not, at least I’m in the right place, with the right doc. If it’s not, if it’s not, if it’s not, I’ll cross that bridge when I come to it and when I do, there will be tears.
Originally published at imsickandsoareyou.com