Some Thoughts and An Update (Warning: Long!)

Hello once again, to anyone out there who may still be reading. And also, thank you for continuing to check up on this site. I know my blog postings are becoming fewer and farther between, but I hope to bring updates still when something is happening. Or when nothing is happening…

Ultimately, though, this is a “cancer blog,” so I hope to keep the content related to my cancer adventure. For that reason, the posts are becoming rare. The things in my life are beginning to be less and less related to cancer, and that is a good thing. A very good thing. I hope that maybe someone may still stumble upon this blog and find it a helpful resource, and I also hope that you have found it a helpful resource.

That term “cancer adventure” takes me back to the beginning of this whole odyssey. I remember thinking last summer, before my diagnosis, that it was time for me to undertake a new adventure. After I graduated, I moved to Winter Park and had been living there for three years. That was the fulfillment of a childhood dream—to become a ski bum and ski as many days as possible. And while my some of my friends and peers were getting jobs and my parents were wishing I would go to graduate school, I was truly quite proud of myself for following through on my dreams (though humble and not particularly a service to the betterment of mankind). I was “living the dream,” as we so often say up here.

But then things started to take a turn for the worse. Well, maybe that’s a dramatic phrasing… perhaps a turn for the more mundane. I was entrenched in a very sloppy and unhealthy breakup that summer (which would lead to more sloppiness and unhealthiness later, with my diagnosis and treatment), and the novelty of my mountain life had just about worn out. Not to say I no longer enjoyed it; the life had just changed from a splendid thing of newness to well, everyday life. But with better weather. :)

At the beginning of every ski season, I would tell myself (and my parents) that this would be my last season, that I would get on with things and go get a life. And by the end of each ski season, I would say, “Well, just one more season, and then I’ll get it together.” Three years passed in this fashion and I guess I now know how castaways on Gilligan’s Island felt after their supposed three-hour tour.

It’s impossible to say how things might have gone because I’ll never know. Things went the way they went, and here I am now. There are those who say they think I may have continued a relationship with my ex-boyfriend had I not been diagnosed. I am ruminating over the idea that I may have moved on to another stage in my life, leaving the mountains behind. Who knows? But I do remember feeling that it was getting to be time for me to move on to my next adventure. I had a restless feeling and my life had gained a certain aspect of predictability. My first big adventure was living and studying abroad in France, my second was working and skiing in the Colorado Rocky Mountains, and my third was yet to be determined.

Unfortunately, my third adventure turned out to be cancer. I was originally thinking something more along the lines of Hawaii, or New York City, or Chicago. In the end, though, I didn’t end up having much of a say.

In the early days of diagnosis, I remember thinking at the time that I wasn’t really that stressed. But thinking about it now, I know that I really was. But in the face of all that stress, I also remember being optimistic in my innocence. What I mean by that is I had no idea what was to come, and so I thought, “Hey, this isn’t so bad.” It was in that naive but plucky spirit that I decided I would call this whole mess an “adventure.” I tend not to use popular words that I feel do not represent me or my attitude; I would never describe an awesome powder day as “sick,” for example. So the typical words “journey” or “experience” are not in my frontline vocabulary. I think this is because “journey” can include a certain level of pleasantness and willingness to go along, which clearly is an unfitting word in my opinion. And “experience” is so vague, though I sometimes use it.

Still, “adventure” is an appropriate word, I think. An adventure is a step into the unknown. On an adventure, one’s physical, mental, emotional, and spiritual strength is tested. I cannot think of a more apt word.

Anyway, the toughest parts of my cancer adventure are over, I hope. The most common question I field now is “So did they get it all?” I think a lot of people don’t understand how cancer and its treatment work. The unfortunate answer to that question is that I have no idea. We did our best to “get it all,” but we won’t know whether it’s all gone until either 1) it comes back, proving that we didn’t get it all, or 2) five years pass and it doesn’t come back. I’m not sure if all cancers work this way, but with breast cancer, if it doesn’t come back in five years, then you’re “cured.” This isn’t always true, but with my particular kind of cancer (triple negative breast cancer, or TNBC), it is very rare for it to recur after five years. And nowadays, doctors and researchers say that while the rate of recurrence is higher in the first three years for TNBC (and hence also more deadly), it’s pretty rare for it to recur after three years. And by five years, we can pretty much assume it’s gone and ain’t never comin’ back. This is the one advantage of TNBC. Breast cancers that are estrogen receptor positive are at risk of recurrence as long as there is estrogen in the body.

The measurement of five years is measured from my first surgery on January 23, 2009. So I’m about halfway to my first year. Tom Petty was onto something… the waiting may just be the hardest part. Actually, who am I kidding? The first part was pretty damn hard.

Anyway, I’m finding it challenging to think about things in the future. A year seems about as far away as possible. I sometimes feel paralyzed when it comes to making plans for the future because I have no idea what my life could be like. I know it sounds negative, but it has become a reality. In one year, I could be healthy and happy. In one year, I could be back in treatment for a local recurrence (the return of cancer, but confined to the breast). In one year, I could be going through treatment for metastatic cancer (the return of cancer in distant areas, such as bone, liver, lung, or brain). In one year, I could be dead. So it’s very hard for me to think what I want to do next. For most people, signing a one-year lease doesn’t seem like a serious commitment. When you’ve had cancer, it is. You have to realize that there’s a chance you’re going to have to break your lease. I was lucky the first time because my landlady/roommate is a good friend and it wasn’t a big deal for me to say, “Hey, I have cancer. I’m moving out at the end of the month to start treatment.”

All of this leads me to the important part of these posts, which is an update of what’s going on in the life of Carrie. This month marks three months since my second surgery. My doctors want to follow me closely, and that involves lots of check-ups. My medical oncologist will see me four times a year for the first year, then three times a year for the two years following, and then twice a year for the last two years. I think the surgeon and radiation oncologist will follow up with me, too, but not as intensely. Anyway, for all of these follow-ups, I had to get some scans and tests done. I had a bone scan to check my bone density, a PET scan to make sure things are looking good as far as the eradication of cancer goes, and blood work.

The bone scan showed that I have some osteopenia, which is a loss of bone density, but not as severe as osteoporosis. And thankfully, my PET scan was clear. The blood work came back looking very good too. All my doctors are pleased with my results and think that everything is looking good so far. Truth be told, though, it’s very early for anything to be wrong. But good news is good news, and I’ll take what I can get when I can get it.

After my appointment with my surgeon in Denver, I moved back to Winter Park. While I’m happy to be back, it wasn’t the easiest decision. I was already starting to get ready to move on with my life. And there was the ex-boyfriend situation. But there were also reasons I wanted to come back. I felt like I was robbed of my last ski season (even though I got 30 days on the snow), and I also didn’t want the reason I left to be an illness. I wanted to leave on my own terms. I knew I wanted to leave Fort Collins to hopefully restore some normalcy in my life, and Winter Park was the path of least resistance because I already had friends, a job (to start in a few weeks), and a place to live. And it’s also extremely beautiful here. The thought of moving to a strange new city seemed, at this point in my messy life, entirely too stressful. So here I am, back where I was.

The sensation of it all is very strange. With the warm weather, the appointments, and the shuffling from Fort Collins to Winter Park, I was flooded with memories of last July. It’s amazing how much a life can change in one year. And it’s so strange to be in the same places doing similar things, but be an entirely different person. Last year I thought that it wasn’t so bad, and that I could do it again if I had to. Now I think that it’s been bad but still know that if I have to, I can do it again. But there were times where I literally thought I couldn’t do it ever again. Ever. Again. God willing, I will never have to. But I am now wiser. Would I go back to exchange this wisdom for my carefree and innocent naivety? Of course. That was an easy one.

So the new challenge is to find how I fit in. On the Young Survivor Coalition Bulletin Board, we talk about the “new normal.” The new normal is what we call everyday normalcy post-cancer; it is not the same normal as before cancer. It’s an idea that I struggle with; currently I’m having trouble accepting that I will never be the same person I was just a year ago. I want to blend into my old life seamlessly. I want to be able to do the things I used to do and feel the way I used to feel. I don’t want to be “Cancer Girl,” and I don’t want the first thing people know about me to be that I had cancer. I want to feel the joy of being in my twenties and unattached (to a boyfriend, husband or children), and I want to feel like I’m going to live forever.

At the same time, I don’t think that it’s healthy to pretend like cancer never happened to me. I want to sometimes, and I justify that if it makes me feel better, then what’s the harm? But then I come back to earth, and I realize that even if it were healthy mentally, it’s still an impossibility. I have too many reminders. I’m not wild about my short hair (though it grows just a little every day). I have a 2-inch scar on my right breast. I have a scar from where my port is. I’m tired, and my knees ache. I’m sad, sometimes, still so sad that this has happened to me. And angry, too. These feelings don’t reign over my thoughts, but they’re there nonetheless, and I refuse to ignore them. And there are all these women I’ve come to know through this experience who have struggled like I’ve struggled. I value their friendship and their support, and I want to give back everything I’ve received. I care about what’s going on in their lives. To turn my back on cancer would probably mean I’d have to turn my back on them, and that’s just not going to happen.

It’s hard to say how this recommencement of life will go. I haven’t started working, so I have no way to measure how recovered I am. I haven’t been tested much because I haven’t been doing much. And while the terrain is the same, I am now a different voyager.

With some trepidation and my standard courage, I step forward. Stay tuned.