Last month I was excited to go to what I was led to believe would be my last, or next to last oncology appointment, either way 2015 would be my final year. The visit before the phlebotomists asked me what I was going to do to celebrate my release. They said it was tradition for most cancer patients to celebrate finally being free with a trip or a big purchase. So, I already had my trip scheduled and booked, I had everything ready to go. On the big day, I took my three year old to see the nurses. They had heard so much about him I wanted him to be able to say "goodbye".
When I was first diagnosed, I was given the option after surgery of doing CT scans approximately every other day (or at least that is what the schedule they presented me with seemed to be) or do a round of chemo and have hardly any CT scans and be done with monitoring a lot sooner. Well...doctors have a tendency to lie to get you to do what they want you to do. I did the chemo, which seemed to be immediately followed by a CT scan. I am not so sure I wasn't getting a CT scan during my infusion. So anyway, that was the first clue that things weren't going according to the schedule I was initially presented with.
The bending of the schedule continued until my three year mark, which is when I distinctly remember originally being told I was going to be cut free. Then the oncologist said it would probably be good to monitor until the five year mark, but we would do less CT scans...then he immediately sent me for a CT scan.
You never know when you are no longer a "cancer patient". I mean the cancer was cut out eight days after we found it. Was that the end? Was it after my chemo infusion? Was it after my chemo brain fog left? When? I will admit, there are advantages to being referred to as a cancer patient. If you get a Diet Pepsi instead of a Pepsi at the drive thru, normally, they would just give you a Pepsi to make up for the mistake. If somehow you can work the words "cancer patient" into why you were devastated to get a Diet Pepsi, you get your Pepsi AND an ice cream. But still I was done being the cancer patient. I was hoping that the Oncologist Code said they could only lie about continuing monitoring one time, then they had to go back to lying about CT scans.
There is a stigma about being a cancer patient. Among cancer patients there is the joke that you always here "you look good" out of a person's mouth first. No one really knows what that means. Do we look better than death? Is that what they were expecting? There are many colleagues that I see a few times a year with whom I used to have normal conversations, ever since my diagnosis they start off the same way. "How are you feeling?" It's just front and foremost on some people's minds. Which in turn, makes it front and foremost on my mind. I was looking forward to being able to say, "I'm finally done with oncology so we can go back to talking about guitars, cars, or some sport that you care about and I don't."
My son and I walked into see the oncologist. The phlebotomist had already said "bye" certain that I was being cut loose, just shy of five years. I did my first and what I expected was my last introduction between my son and the oncologist, when I got the news...maybe it's still too early to cut me loose. Maybe we should monitor tumor markers and CBC for a few more years, BUT no CT scans! I expect to get an order for a CT scan in the mail any day now.
I didn't want to let on to anyone, but I was devastated. I had been looking forward to being released, well, since the day I was diagnosed. The nurse practitioner thought sure it would be today, the phlebotomists thought it would be that day, everyone in that office thought it would be that day...except the doctor. Luckily, I had my son with me so the only things I was allowed to focus on were pancakes and Legos...not at the same time though...well OK, he did mention that we needed to buy more Legos while eating his pancakes. I sent messages out of the news to those that were wanting to know. Almost all wished me congratulations that I didn't have to do CT scans anymore and that it was good news. Only one person asked me how I felt about that. And the truth is I hated it! I wanted to be done. I wanted to be free. I wanted to get on with my life. I wanted to be able to say that I was a "cancer survivor" and not a "cancer patient". I wanted to be free of the stigma. I wanted to be free of the "How are you feeling?" I wanted to walk out from under that cloud and finally be done. But now I have to let the cloud follow me around for a few more years.
So that's where life left me that day. Still a cancer patient. I had a special trip booked that instead of being a celebration of being done with cancer it's become a reminder that I am still a cancer patient. And there I found myself, sitting in a booth in a restaurant, with a cloud still over my head, a bandage from a blood draw still on my hand, and a three year old giggling while he stabbed and ate the "eyeballs" off his pancake and demanded Legos. Well, I guess life ain't all bad.
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