Into the After After Land

There is this great abyss between treatment and finding your “new normal.” When treatment ends and you start to wonder what is next, you fall into this abyss, and you just sort of float around and try to latch on to pieces of your former self. As you are trying to adjust to checkups instead of infusions, I found it was sometimes possible to forget that I was bald only months before. I’d hang out with friends and laugh, and in those moments, the burden of being constantly aware of your condition was alleviated. Quick enough though, someone would complain about their monthly visit from Aunt Flo, and I would be reminded that I won’t be seeing Aunt Flo for 3 more years. When my eyeglasses fog up at the bottom because heat is radiating from my cheeks, I remember that I am a survivor. It is these small constant daily reminders that make you more aware that you are in the “after after” period of your survivorship. After diagnosis, after treatment. People give you all kinds of advice about the stages of diagnosis and treatment. Well in my “after after” – in my abyss – where is the advice for that?

So far, I’ve found that you make it up as you go along. I find myself making constant gut checks. I think about where my head is…. How am I feeling today about where I am in my survivorship? Is my internal compass pointed in the right direction? Am I being fulfilled in my life? The answers to those questions and the many others I ask myself vary from day to day, but I can say as a 26-month survivor that every time I take a reading of my state of mind, I find another piece of the puzzle that makes up my “new normal.” Yes, the fear, the worry, the isolation, the anger, and the wondering that are present deep in the abyss, creep back into my mind when I allow them to be explored. And as survivors, we should explore them, and seek direction if we need to, because I know that my “new normal” puzzle is far from complete.

I started a clinical trial in February, and despite the lactose intolerance that the pills cause, my body has adjusted rather well to the side effects. The best side effect of all is a tiny bit of peace of mind. Strange to think that being on treatment again brings comfort, but it does because it provides an element of structure again in the chaos that is the abyss. I do occasionally worry about the day 6 months from now when I have to stop taking the pills, but for today, I am going to keep gathering my puzzle pieces. I hope that in the coming months, I will have enough of the pieces of my “new normal” gathered and tucked away in my mind that I won’t be fazed one bit by letting go of my pills and floating back into the abyss.

Tick Toc

Sometimes it is really really hard to stop viewing your life in the increments between scans and checkups. I know exactly when my 3 months are up and it is time to go back to the doctor for bloodwork. Every 6 months, I get a mammogram. Well, two weeks ago, I had a pretty big "oh crap!" moment. I went in for my mammo and while I was waiting to speak with the radiologist and hear that everything was A-OK, the mammo tech comes up to me and says, "Hey, I need to get a few more pictures."

Screeeeeech!

My worst nightmare. Hearing those words. I was fozen. Oh crap. What the heck does that mean?!? She told me that they saw something on my films so that warranted taking close-ups of my cells. Ugh.

After a few more pictures, I was shown my films and the white spots that appeared in the area where my cancer once was. Uh oh. What is that!?!

They told me I could wait 3 months and come back for another mammo to see if the spots had changed, or I could biopsy it. The only way to know for sure is a biopsy. No way I was waiting 3 months. So, I went in to have a biopsy. Waiting for that appointment was agony. I was instantly flung back into that period of infusions and scans that I thought I was starting to finally put behind me. The biopsy itself was pretty painless, although it did sort of feel like getting your ear pierced, except ya know, they didn't stick the needle through my ear.

Four days later I got the results. I noticed that I had a missed call and a new voicemail from my doctor. The waiting was killing me and I wanted to know if I was going to be able to move forward in the new direction I have charted, or if I was going to be stuck back in the past two years again. As I started to listen to the voicemail, I swear my heart stopped beating. I was completely still as I listened to the best words a person can ever hear from their doctor. She said "You don't have to call me back...."


Whew! Great news!

Spreading the First Descents Love in Texas!

Last weekend in Dallas, I had the honor of attending and speaking at a First Descents dinner party. If you haven't heard of First Descents, check them out! I had the experience of a lifetime at the Wisconsin kayaking camp in June 2009.

FD volunteers Scott and Anna Ritter hosted the dinner party to promote the FD message. We gathered at the beautiful home of Art and Linda Alexander. About 45 FD friends and family gathered for dinner and wine to discuss the FD programs for young adult survivors. FD Founder Brad Ludden and Board Member and Executive Director Joel Appel were there to provide details on the FD mission and programs, and guests got to view part of the new documentary about FD called The River Ward. (Click here to view The River Ward trailer)

I am attending the Vail kayaking camp at the end of August, and I can not wait to get back on the river! This year I am going to get my roll!!