The End of Treatment Is Not the End of Cancer
Okay, so my last chemo infusion was just about three months ago. A month after that, I underwent a series of scans and tests, and they determined that, at that moment, I had no remaining evidence of disease.
Awesome news, right?
The best for which one could hope. Right?
So, why didn't I feel more relief? Why, two months after receiving this news, am I still not feeling relief?
My hair is coming back, my strength is coming back, my energy is coming back ... I'm feeling more and more like my old self. Yet, in some ways, not at all like my old self.
Now, I'm generally a pretty positive, glass-half-full kind of person, so my lack of enthusiasm about my remission news (I actually wanted to call it "alleged remission" just now, if that tells you what kind of head-space I'm in at the moment) has been bugging me a bit.
For at least the next two years, I'll be having CT scans and bloodwork every three months to determine if I have any new cancer growth. My CA-125 protein level will be monitored, and my chest, abdomen, and pelvic areas will be closely watched for anything that looks like it shouldn't be there.
My first 3-month appointment is in early October, and I'm already feeling anxiety about it. The little devil on my shoulder (actually, she's more of a whiny, Debbie Downer sort that crops up in times of fear, usually in the middle of the night) has been whispering, "Of course your initial scans were negative ... your body was still pumped full of shitloads of chemo drugs ... that doesn't mean the cancer is really gone."
I was starting to feel a little bit crazy and ungrateful. Then I went to see the folks at Vanderbilt-Ingram Cancer Center's REACH for Survivorship Clinic.
REACH stands for Research, Education, Advocacy, Care, and Health. And they're essentially there to help us survivors re-assimilate to life post-treatment. Kind of like those programs that help prisoners adjust to life on the outside.
You see, when you're in treatment, there's a great deal of comfort to be found -- at least there was for me -- in being monitored weekly. In having a dedicated care team monitoring your blood, checking your vital signs, asking you questions, actually listening to your thoughts and concerns. Having someone on duty.
Once you're done with treatment, you're suddenly cut loose. On your own. The guard station abandoned.
Or at least, I'm now responsible for being my own guard on duty. And I know I'm not as vigilant as a trained professional. And I'm definitely more lazy.
So it turns out that programs like REACH are designed to help with the transition. There are counselors there, as well as nutritionists, nurses, holistic health practitioners, support groups, genetic experts ... a host of people who know exactly what I'm going through and assure me that I'm not crazy or ungrateful.
Who knew that it's normal to feel like you still have cancer even though you're told that you no longer do ... that it's going to crop back up at any moment?
Who knew that most recent cancer patients have anxiety about going back to work after being on extended medical leave?
Who knew that the side effects I continue to experience -- swelling, numbness, joint pain, stiffness, fatigue -- are all normal and actually often worsen post-treatment before getting better, IF they get better?
And that not only is it normal to worry about my child and other family members getting cancer, there is testing available to address these concerns?
I met with a very kind and compassionate social worker named Ali who put me at ease almost instantly. I unloaded all of my fears and concerns onto her, and nothing I said surprised her. It was clear that everything I was saying was very common and expected.
And when Ali said, "The end of treatment is not the end of cancer," I started to cry.
I'm not crazy, nor am I ungrateful. This is all just part of the process, and it's a life-long process. And apparently Cancer PTSD is real.
I am no longer the same person that I was pre-cancer, and -- in many ways -- I am so very thankful for this.
I have friends who are celebrating their "cancer-versaries" with such joy, and I understand why now more than ever.
Every day, month and year that passes without a recurrence is a gift. And we just have to live each moment in the meantime with as much joy and gratitude as we can.
And we can also fight. Fight to raise awareness about early detection. Fight to raise money for a cure.
Can you imagine a world without cancer?
I sure hope that I see it in my lifetime. And if not in mine, then in my daughter's.
It can happen.
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