[If you're thinking that this blog entry is just a bunch of rambling thoughts running into each other, you're right. I wrote it over a few different sittings and just decided to put it out there. I didn't really want to agonize over making it "poetic" or particularly articulate, just honest.]
I didn't expect to do another blog update until . . . who knows when. The best word to describe how I've been feeling over the last few months is "overwhelmed." If someone just looked at my life, my job duties and schedule, etc., they might think, "Why should you be overwhelmed?"
I often ask myself the same thing. After my follow-up exam at Swedish Hospital last week, I think I understand a little more. Another person may deal with the same circumstances and come away doing much better than me. Alas, it's just me, myself, and I on this journey, so whoever that superior person is, it ain't me.
I think I understand more about why I feel overwhelmed because I have a more realistic view of my life today than I did a week ago. I've had pretty aggressive treatment for cancer and, even though initially, it wasn't as bad as I'd anticipated, the adverse effects have been a little more slow and insidious. I had a bone scan three days ago at Seattle Nuclear Medicine and got the results within an hour. My oncologist showed me the graphs that showed my bone density going down, down, down. I've lost 12% bone density over the last two years, due to the hormonal treatment I've been given to prevent a breast cancer recurrence.
In my gut, I didn't expect the bone scan to be good. I knew that something was different--wrong, you might say, with my bones. I can barely squat down now because my knees hurt so bad. If I sit too long or go for a ride in the car, I can barely get out of the car without my hips, knees, ankles, and feet aching like an 80-year old. Some have told me that this is normal aging. Well, no, it isn't. It happened too fast. It's a major risk factor/side effect of taking Arimidex.
Arimidex has been shown to have statistically significant success in preventing the return of breast cancer. I didn't want to take it, but, after doing the research and reading the reports, I decided that it could possibly prolong my life. I wanted to be around to see my grandchildren and to be a part of their lives.
I had a decision to make last week: keep taking the Arimidex and most probably get osteoporosis down the road, or stop the medication and hope that I can get some bone density back. Oh, and have less protection against the return of breast cancer. With cancer, there's always a trade-off. No one really knows the outcome of any decision, obviously. It's basically all a crap shoot. The doctors don't really know, either, they're just doing their best to hedge their bets, using statistics as their guide.
I told my oncologist that I think I need to get off the medication. I've "put in my time," as the regimen is usually for five years post-treatment. I've hit the five-year mark. I was surprised that she didn't offer more of an opinion; she basically let me call the shot.
Some doctors keep their patients on the meds longer because, as I said, no one really knows. You hit a tipping point where the risk factors of the meds equal or overtake the risk of the cancer coming back. Finding that tipping point is the tricky part. So, when I said that I didn't want to lose more bone density, she said, "Well, that IS rather severe," followed by, "There is such a thing as enough treatment." As of today, I have received all of the treatment that Western medicine has to throw at breast cancer.
My husband expressed concern that coming off the medication would affect me psychologically--and he's right. Removing the last layer of security is always tricky. I went through the same thing when I finished chemo and radiation. "Dancing in limbo" is what they call it. You're thrilled to be done . . . but feel like you've been abandoned to the great wasteland of cancer survivors, wandering the barren plains, moving forward, all while watching one go down over there and then another over there and hoping against hope that you're not next. Sorry if that's too melodramatic, but it's how I envision it. I've said before that the psychological challenges of cancer are as significant as the physical challenges.
I think that I've been experiencing some kind of post-traumatic stress. (These days, I know how everything has to be diagnosed as some kind of syndrome. Someone said that, in the old days, kids with ADHD were just called brats.) But, getting back to my point, I think I have a lot of the symptoms of post-traumatic stress. There are pros and cons to having it, actually.
One of the coping mechanisms I've developed by going through cancer is detachment. It's not a well thought-out coping mechanism; it just happens as a result of going through something scary and life-threatening. In my spiritual tradition (Orthodoxy), a certain kind of detachment from this world is encouraged. It helps us see our true spiritual condition and that the world is going to pass away, placing more importance on the kingdom of heaven within us.
So, in that respect, I definitely feel more detached. I used to get so excited over things like decorating for my home, going on vacation, going to parties, wearing nice clothes, etc. I can honestly say that those things just don't do it for me anymore. They seem so shallow and kind of ridiculous now. But I admit that I miss being able to get excited over temporal things . . . it seems there's a certain kind of happiness with small things that I just don't possess anymore; it's as if nothing seems worth the effort if it doesn't have eternal significance.
On the flip side, one of the good things about detachment is that I am not as afraid as I used to be. You might even say that I feel more empowered. Honestly, on the way to every photo shoot, I'm anxious and even a little depressed (I figured out that it's because I'm scared). "What if something goes wrong?" "What if they don't like their photos?" "What if I just come across as an idiot?" Yadda, yadda, yadda.
See, in the old days (before cancer), I never would have attempted to be a photographer because I would have been too afraid of all of the "What ifs?" No more. Now, I just forge ahead. I understand now that courage is being afraid and moving forward anyway. It doesn't mean that you're not afraid.
And, after moving forward, when you start having a little success here and there, you learn that there is something to be said for being afraid and moving forward anyway. You're learning and you're growing. Sometimes you learn what NOT to do; sometimes, it's the other way around. But, the important thing is, you're growing.
I heard someone say recently, "Growth lies at the edge of fear," and it resonated with me so strongly that I wrote it down and kept the note on my desk. Probably for the first time in my life, I really understand what that means.
Before cancer, I used to feel and contemplate just about every moment. I pondered everything in my heart while it was happening. The thing is, I miss that part of my personality. I miss pondering things. I almost feel that I've lost the ability to do that now. I feel too detached to ponder much anymore. I just move forward.
I think it's kind of sad. I'm torn between feeling that I've become more empowered and that I've lost something. And the truth is, I have lost something. I've lost my old self.
I was talking with someone today about the dirty little secret about cancer. See, people love happy endings and they love the videos and photos of people "kicking cancer's butt" and dancing in the operating room before a mastectomy and all that. It makes us feel good and a little less afraid. More in control.
And I mentioned to this person that the dirty little secret is that they don't tell you about the real repercussions of cancer treatment. I think that does a disservice to people. For the longest time, I was embarrassed to mention these things because I was supposed to be so happy to be alive (and I am). For all appearances, it looks like I'm all well now, but my body has taken quite a hit. I'm never going to be the same again. I'm not trying to be melodramatic about it--I'm just acknowledging the truth.
I realized this week that I've tried to downplay it to just about everyone, including myself. I'm not looking for sympathy, but I think we should be real and truthful about the hard things, like the repercussions of cancer treatment. One whole part of my life (and marriage) has pretty much been eviscerated due to the treatment. I don't want to go into detail, but it's not too hard to figure out if you know anything about the effects of menopause. Well, the treatment I've been on is like menopause on steroids.
That's where the trade-off comes in again. Trading quality of life for actually getting to live, love, and be loved. And really, that trumps all.
I considered it a lot and felt that wanting to have my old self back was selfish . . . I should be thankful to be alive, after all. If I lived in another time, I might not be here now. But all losses need to be grieved and I haven't really given myself permission to grieve what has been lost. I was afraid to let myself go there.
This week, it hit me. I'm sad about my bone loss and the glaucoma I was diagnosed with last year and all the parts of my life that will never be the same. I hope that I will move beyond the sadness and come full circle to being thankful. I think I"m on my way, but I'm not there yet.