CANCER: I will SURVIVE

Gentle Readers-

Ok- so for the past few months post treatment, I have been casting about trying like Hell to figure out how to live my life; and wondering just why, oh why my life sounds like a Gloria Gaynor song?....Yes, it is true. First I was afraid. I was petrified. But after spending oh so many nights, just thinking how cancer did me wrong, I grew strong. I learned how to get along.....

Ok- that's some serious overkill; not sure about the strong thing at all as I am still trying to sort stuff out...but getting there? Sure!

While I offer no existential insights (sorry to all you cancer supporters out there who think a cancer diagnosis makes patients benevolent....) at this time, I am writing to tell you about a new word I learned: Survivorship.

Now, for those of you well educated readers out there, perhaps this is a word with which you are familiar. However, I was educated in Catholic school in the Midwest. What with those poor teachers trying to keep us from engaging in premarital sexual activities, how on earth would they ever get around to teaching us the word survivorship?
Well, at the ripe age of 44 I learned it- yesterday. It means, (drum roll please....) the state of being a survivor. What the Hell? Such a simple word. And learning it rocked my world!

For months, I have been casting about trying to figure out just how to best describe my new state of being. No longer being treated for cancer, I am not a patient. And because of the weird rules around "remission" I can't really claim that as my status either. So, I settled on saying "I'm in recovery from cancer treatment."

I know....too many words. And out of sympathy for the poor souls who had to endure listening to that crazy phraseology, I knew I had to do better.

Ok, so survivorship gets me there. I am SURVIVING. I am in the state of surviving some nasty shit. And I don't think I need to make any more information necessary. It's clean, simple. And it's a path that people can follow.

I also learned yesterday (way to GO Thursday!) that at least in the Seattle area, the Seattle Cancer Care Alliance has created a Survivorship Program (206-288-1024). This program (billable to your insurance) allows former cancer patients (survivors) to meet with some super smarty-pants people who will put together an entire packet of information tailored just for you.

That's right, this packet will break down the drugs you were giving and the dosage amounts. It will tell you how much radiation you were exposed to, if applicable. And most importantly, it will tell you just what the long-term effects of this shit will have on your body; something, by the way, the oncologists fail to mention in their crusade to keep their mortality rates low....Seriously. They just look at your medical case and then pump you full of crap to keep you living. And as a patient, I just accepted this madness without asking- "Um, so what happens if I don't take the drugs?" (Actually, that's not true. When I bitched about needing radiation, my radiation oncologist snapped at me- "You're going to do radiation. Otherwise, you'll die. Sorry I have to tell you this.")

Also, this packet will recommend who, going forward in survivorship mode, you will need in your medical roster. For example, I learned that I will need a cardiologist, as apparently my heart took a beating (no pun intended) from one of the drugs I was given. And apparently I am at a high risk for developing heart disease....Man, that sucks as I really, really, really like cream cheese and bacon....

Sigh...

Now, maybe other places in the country are already doing this. And if so, I applaud you. However, if it isn't being done, then it's time for patients to rally the troops and demand this kind of information and support. I mean, this week alone I called my oncologist because my boob hurt. What? I knew I needed to possibly talk to a different doctor. But, who? as I wasn't sure if it was a cancer/blood clot issue or an OBGYN issue. And after calling the OBGYN THREE times (that's right, Jennifer Jaucien, I'm talking about YOUR office), and explaining to two different people that "I was treated for Hodgkin's lymphoma and had a blood clot blah, blah, blah..." I was still asked about the duration of my current pregnancy.

Suffice it to say, I defaulted to my oncologist. Why? They answered the phone and got me in the next day for an appointment. (Turns out it wasn't a blood clot; just needed some ibuprofen.)

So, the bottom line is this- after being a cancer patient, I sometimes don't see the forest for the trees. I am hoping my new status as a survivorship participant will ground me and get me on the right path and place the right experts in my life so that I do MORE than survive. I want to thrive, baby.... because this little lady is no longer scared or petrified.