One day, in the beginning of this whole mess, I was lying in my bed anxiously awaiting a call from my oncologist. It’s a funny thing when you’re awaiting biopsy results. You want them, but you also kind of don’t. The phone finally rang. I was initially startled and hesitant, but eventually worked up the guts to answer.
I’ve got your biopsy results. I thought you’d like to know. It’s not cancer, but it’s not good.
I made it just a few steps to the top of the stairs before collapsing into the fetal position and shouting through my tears, “Babe, it’s not cancer!” My husband rushed to meet me and fell next to me in his own heap. We both cried. It’s not cancer! The relief was measurable. After a great exhale I could swear his body felt lighter atop mine.
Of course, we eventually learned that relief would be short lived. Desmoid tumors may not be cancer, but they are their very own special spot in hell.
That time, that moment when my husband and I were both reduced to lumps of sobbing flesh at the top of the stairs, that was the first time I understood that the weight of my disease bears down on more than just my shoulders. That was when being sick officially became complicated.
I can take it, if it’s just me. If no one is bothered by the worry, the exasperating fear, the emotional and financial side effects. I could handle it. It’s not easy nor is it fun, but it’s manageable, and at times what I’d prefer.
But I’m not alone, I should say thankfully. I’m not all by myself. The meandering, creeping, invading tentacles of illness stretch out to my spouse and my children, my friends, acquaintances, readers, fellow bloggers. When I get bad news, to varying degrees you all get the same bad news. And I hate that. I find it loathsome, by far the most difficult part of this tumor mess.
In the five years I’ve been dealing with this I’ve had to work to walk unaided. I’ve dealt with no less than four medications and their side effects and their interactions with other medications I’m on. I’ve ridden the roller coaster that is my mental health while being on and coming off all these medications. I’ve developed a unique set of skills, but I’ve yet to master the art of bad news.
I don’t like the squinched in faces or the sighs. I get really sad when I see the doe eyed looks. So, I hold it in. I keep in all the worries, close the doors and shut the blinds. I write less, don’t talk on the phone. Let’s not chat, if you please. I’m a little busy worrying about things.
That’s how I’ve lived for the past few months because for the past few months I’ve had a steadily growing feeling that my tumor has recurred. So, for the past few months I’ve been wringing my hands and shutting you out and living a half life. For the past few months I’ve worried more about the feelings of others than I have about my own. For the past few months I’ve let it all rest on my back and, I’ve got to tell you, that’s no way to live.
When I got the results of my MRI, when it told me about increased cell activity, I knew the odds were not in my favor. It seemed like from that moment I was on borrowed time. I tried to remain hopeful and then I felt the itch and the pain. I started to struggle up the stairs. Sleeping on my left side became less and less possible.
I wanted to get through the holidays. This tumor has ruined so many birthdays, holidays, vacations, anniversaries. I’ve officially lost count. So, I was quiet with everyone except a few close souls. Then I closed the door and shut the blinds and thought I was doing everyone else a favor.
I want to find the humor in this, the absurdity. I want to be real, but I’d like to be light. I want to stay hopeful. I’d love to not worry anyone needlessly. I just don’t want those squinched in faces. But sometimes you can’t have what you want even when you want it so bad.
This is part of it, the worry, the lingering woe. I am forever looking over my shoulder at what may come. And this time, that worry might not be senseless, inflated, overthought and amplified. This time, the worry might be right.
This is part of it, the wait, the seemingly endless days until I get back in that tube and find out what is really going on. The wait is lonely and the wait is long when you do it by yourself, when you shut the door and close the blinds, when you fear the squinched in faces.
Five years after the diagnosis, I’m still an amateur it seems. I don’t know if I’ll ever get the hang of being the sick one. I feel like I can never do it right. I let it out and I dread burying you. I keep it in and the weight of it all may kill me. I’ve found no happy medium with bad news. I don’t want to let it out, but I can’t take keeping it in.
In a couple of weeks, when I get in that tube and they strap me down and I hear all the bangs and whizzes and ear splitting screeches, I will be thinking of chemo. I will be thinking of nausea and hair loss and brain fog and achy joints and painful skin and dwindling finances.
And if they tell me yes, my hunch was right, I will take in a breath and hold it for a year or so or however long this treatment will last. And if they tell me no, I was wrong, I will surely be shocked. Relieved, of course, but more so shocked. And I will let out a sigh that makes me weigh less.
I hate to be the bearer of bad news, but I think my tumor is growing again.
I hate to be the bearer of bad news, but I need to be. The weight of it can’t only be mine.
*I was fortunate to be wrong this time. At my appointment on February 17th, 2018 I found out my tumor was still stable.