Since August I have been struggling to write. Writer’s block would be the easy explanation. But as reality has it, there is so much more going on.
For the first year of my diagnosis I scorched Earth with my posts. I dipped into a fiery pot of fear, anger, disgust, and bewilderment and scrawled my words on to a virtual page. Writing was my way of exploring this profound change to my life. I explored my fears of dying, the surreal reality of living with cancer, and reached out for support across the world. And for a self-described lazy writer, I was more prolific than any period in my life. And then it suddenly stopped.
It happened as the tide began to go out and the pink October tsunami could be seen building in the distance. Unlike last October, this time I allowed the tsunami to wash over me and, at the same time, I successfully ignored it. I boycotted October and wrote nary a word. I could have cared less about ta-tas, tits, boobs, saving second base (gross), pink ribbons and, yes, The Pink Diva herself, Nancy Brinker. And it was surprisingly liberating! It was the best feeling in the world! As much as I hated the pink, I found that I could live with it after all. Acceptance. Finally.
The crisis was over. The back pain that compromised my optimism and self-worth, my career goals, my finances, and everything else was ultimately resolved. My disease was stable and I could once again return to the work that I love so much. I had moved from the reactive phase of my disease to one of maintenance. And I have been out of sorts ever since.
Clearly the inspiration to scorch the Earth had begun to wane. One theory put forth is that with my energies now pouring into creative ideas and goals at the office, I am otherwise tapped out. The second theory posits that with acceptance reached I need to find inspiration from another source. The third theory is that with acceptance I’ve also tapped into denial. You know, everything is fine so there is no need to write and work it out anymore. And the fourth theory is that I’m just damned tired of it all.
In reality, all of these theories are in play. Even though I walk around every day with a palpable tumor in my right breast and an active–albeit stable–lesion in my sacrum, I do try very hard not to think about it all. But it is not easy. For one, I am always becoming acquainted to yet another limitation. It took a day and a half to recover from a Pearl Jam concert. I did a big load of laundry one Saturday and then ran a quick errand to the market for some fruits and veggies. It took me Sunday to recover. I took a 2.5 hour bus ride, and the next day was spent with pain killers and sleep. Any day of activity needs to be balanced by the following day without activity.
I work a full day, albeit a later one: 10-6 now. I can no longer wake, shower, and run into my day. Now I have to ease into it. My knees hurt so badly thanks to Letrozole. And, sure, I could try something new but it’s working so well on shutting down those estrogen receptors that I am fearful of trying something that could upset the wagon. So I grit my teeth and deal as best I can. My days of teaching have reached an end for if I do push through a day of 10-10, I will pay for it the following day when I am obligated to fulfill my primary professional obligations. *sigh*
I fight my oncologist all of the time. I put off blood draws, argue over scans. In point of fact, I’ve just rescheduled a renal ultrasound that was to take place in two hours for next week. It all takes so much time, money, and energy. (Denial. Can you see that one?) The only doc I will not argue with is my pain specialist. I still deal with pain at some level every single day and have no desire to revisit that hell again. (Ah, see how I can accept one thing and not another?)
I’m sick of taking an entire roster of medications. Christ, I’ve got a cool pill organizer, but the fact that I even have one deflates me. They all work; I am grateful for them. But who wants to swallow all of that chemistry every day? Never mind the costs. Probably a good $3K a year for co-pays on doctors visits and medication. For someone who would heretofore pay $150 annually for scripts, this is a mind numbing jump. My finances have taken a hard hit–something many of you can relate to, I know.
It is difficult when you have to weigh your life against economic realities. Do I take a gamble and pull back on my retirement (which I said I was going to do in an older post)? And will I live long enough to retire in the first place? I’ll be a lot older in twelve years and the pain that I face down now may not be so easy to scare off then. Everyone wonders and worries about retirement–but retirement with metastatic disease? That is about as close to an oxymoron as you can get.
When you’ve gone into the acceptance and maintenance phase of this experience it’s not like we get to carry a “survivor” flag or get excited about the close of surgery with new nips. I am not making light of those things, but when it comes to metastatic disease there is no flag, there is no close. It is always present and it doesn’t always tell you the way it’s going to go. It continues to badger my finances and throw a cloud over my retirement dreams.
Sure, everyone’s future is largely ambiguous, but add metastatic disease to that? The only thing we are guaranteed is financial hardship and a black cloud that hangs low over our “golden years.”
Oh, and cancer. Yeah, we’re guaranteed cancer.
The worst part about this is that I know I am not alone. Too many of us have to accept that we have a heightened sense of ambiguity in our lives that may not make us shut down, but does make it hard to think of the future the way we used to. How do we deal with a life of painful ambiguity? How do we face the unbelievable financial toll that it all exerts? I sure am looking for some answers, so if you have any start filling up the comments section!