Before my last couple of CT scans, when I was hoping for continued improvement but hadn’t yet reached the point of “no evidence of disease,” I told myself that regardless of the outcome, I didn’t expect any radical or sudden change in my treatment regimens.
I meant that to be reassuring, since I had already found a fair measure of comfort in the routines that I had adopted, however imperfectly, and I was reluctant to feel rushed into making any decision to change treatment even if the evidence seemed to indicate a change would be advisable. I have been seriously spoiled by my only prescribed treatment from my MD being daily hormones, and not having to cope with anything more strenuous than chronic fatigue. (Let me hasten to add—constant fatigue isn’t a pleasant state, but from what I can tell, my level of fatigue isn’t nearly as bad as that of many who have to cope with CFS or the like, and my symptoms related to cancer & cancer treatment are also nowhere near as bad as they could be.)
Fortunately, all my disciplines and all my medications appear to have been effective, since I’ve achieved this lovely state of remission. The emotional aftermath of that news is not quite what I anticipated, however, all the same. I suspect that in this way I am in a similar situation to that of Carol of San Antonio, who acknowledged recently when test results were better for her than expected that “Yeah, the good news threw me for a loop.”
Please follow me below the curlicue for more on my peculiar reactions to being officially in remission.
First of all, I’ve been very strongly motivated to take care of (old) business that has been waiting in the wings while I concentrated on my recovery and on my daughter’s stability. During the past 18 months, many ordinary tasks have simply fallen to the bottom of our household to-do list. My DH has been too busy picking up the income-earning slack; my oldest is in law school; my youngest has health issues of her own. I did have a wonderful garden clean-up crew help out last September, without which the whole yard would have been much less appealing this spring. Still, the house is festooned with cobwebs, the gardens are now drowning in weeds, the basement is still full of boxes to be unpacked and sorted, and my personal filing is pathetically disorganized.
Is this significantly worse than it always was, before my diagnosis? Yes and no. Yes, because of the dramatic increase in medical and health-related documents and resources, which have taken over several shelves in my office, and because I think I “ought” to have more discretionary time than I did when I was working full time. No, because I’ve not ever put a very high priority on domestic order. On the other hand, while I’m not any more inclined to be more dedicated to daily household maintenance, I’m much more interested in purging clutter of all sorts (if that distinction makes sense). Put another way, the routine chores are just as unappealing as ever, while I am driven to get through the piles of paper on every level surface. Now I’m hoping that my energy will keep sufficient pace with my drive to get my files in order, my old correspondence advanced, and my back stock of junk eliminated, one way or another. My belief is that once that is done, some of the day-to-day will be easier too.
Second, my rebounding health manifests itself in a desire for more day-to-day pleasure, or at least relaxation. I simply don’t want to return to a grind of work without the leavening of conversation, or a walk outside (when temperatures permit), or a mini-adventure of some sort, on a regular and sustaining basis. That feels selfish in some regards, since I know it’s a relatively rare privilege NOT to have to concentrate on earning a living to the exclusion of almost everything else. But one way or another, I lived that way for many years, always deferring fun. I don’t think it was good for my physical or mental well-being, and I’m not willing to do that any more.
Part of the trick now for me is defining exactly what kind of “fun” is restorative and regenerative. When you’re like me, someone who isn't in the habit of encouraging myself to have fun on a daily basis, that’s a more difficult question than it might seem. I’m working on that, truly. It’s not exactly a “bucket list” kind of concept, not a matter of accomplishments or projects to mark off a list. More of seeking to understand what really makes my heart sing, and then ensuring that I do that, every day.
Third, I have to think and feel my way through what this new status means to me. I’m not entirely convinced that this finding of remission means my cancer is gone for good (though I certainly hope it is, and I intend to act as though it is until I have hard evidence otherwise.) It definitely feels like a reprieve. One of the worst reactions I had to my diagnosis was the sense that I had lost my future—that there was no longer any possibility of making plans or of dreaming about better things to come. Now, I have it back, albeit differently. Certainly I don’t feel as invincible as I did two years ago. Am I grateful for the opportunity to see things differently? Maybe--probably. I’m not sure yet. Again, I need to practice what formulating dreams might entail. I’d fallen out of the habit, I must admit, and didn’t really realize what I'd lost until I found the entire capacity to be at serious risk.
Fourth, I have found to my surprise that I DO need to gear myself back up for compliance with my health-care routines. Basically I’ve played hooky for the past three weeks—not a bad thing, under the circumstances, but probably not productive in the long run. So I’ll be re-evaluating what I’ve been doing for the past few months to see what’s staying, and what’s not. I’ll keep you posted on those decisions as they emerge.
I am very, very grateful to be in this position, don’t get me wrong. But, as with everything else in life, things are more complicated than they seem. At least that’s the case for me!
Before I open the floor to all of you, with a specific list of prompts, I’d like to direct you all to one more lovely and gracious comment from shadowplayer’s wife, Denise. As kind and thoughtful as her husband, she sent me a Kosmail to let me know that she did stop by to read our salute to her husband last week, and that she wanted to say thank you once again (which she did at the end of the comment thread from the MNCC diary last week). In that comment, she leaves a very beautiful tribute of her own: "The cancer ended his life, but it didn't win."
I encouraged her to come by whenever she likes, and I said there may well be more messages left for her and for shadowplayer in the wake of her latest comment.
Peace and blessings to all, wherever we are.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.