The New Normal

A couple of items caught my eye in the news this morning. First there was this:

NEW YORK (Reuters Health) Apr 11 - Women who receive false-positive mammograms tend to perform more breast self-examinations and are more likely to adhere to follow-up appointments. While these behaviors appear on the surface to be healthy, the long-term anxiety caused by a false-positive result is negative, investigators report in the April 3rd issue of the Annals of Internal Medicine.

"U. S. women who get a false-positive are more likely to come back for their next routine screen," lead author Dr. Noel T. Brewer, of the University of North Carolina at Chapel Hill, told Reuters Health. "On the face of it, this seems like a good thing, but scaring women for long periods of time to get them to screen again does not seem like the best approach."

...As expected, the Chapel Hill team found higher levels of anxiety and distress among women who received false-positive mammograms but levels were not pathologically elevated. They also reported having more thoughts about breast cancer than women who had received normal results.

"These effects last for many years," Dr. Brewer noted. "Although their anxiety is not generalized or at the level that requires medical intervention, it is an unnecessary consequence of poor medical care."

I know all about these "higher levels of anxiety and distress," about the fear and the stress and the long sleepless nights that accompany a false positive mammogram. My mother had breast cancer which puts me in a high risk category so I'm already a little bit jumpy every year when I go in. I've had four or five false positives where I was called back for repeat mammograms or ultrasounds to rule out potential problems. And I've also had two cysts that required surgical biopsies, both of which thank the Universe turned out to be benign. But the momentous worry, the heart-pounding palm-sweating terror, the skull-splitting anxiety: I remember those all too well.

Now multiply that anxiety and distress by about a thousand, and that's the way I currently live every day of my life. If I develop an annoying little dry cough--as I have this past week (it could be allergies of course, or a mild spring cold, or some inflamed scar tissue, but it could be something else altogether)--then multiply the anxiety by ten thousand. And this isn't going to go away in a few days or a few weeks. This mega-anxiety is going to be with me for the rest of my life. And really, that's no way to live.

Which brings me to the second news item that piqued my interest. These are excerpts from an entry posted on one of my lymphoma discussion boards today:

According to an article recently published in the journal Cancer, long-term survivors of non-Hodgkin’s lymphoma have quality-of-life concerns that deserve attention following treatment.

Since survival is improving for patients with NHL, researchers have now focused on long-term quality-of-life issues for these patients; the goal is to address certain needs as patients rehabilitate...

Patients who had been treated with chemotherapy reported significantly worse psychological and social well-being and health-related quality of life than those who had not received chemotherapy...

The researchers concluded that “the general health perceptions and vitality levels of non-Hodgkin lymphoma survivors remained significantly lower than those of their peers in the general population. In addition, survivors faced practical problems with work and finances that deserve additional attention during the period of rehabilitation.” Survivors of NHL may wish to speak with their physician about some of these concerns and potential ways to improve them.

Reference: Mols F, Aaronson N, Vingerhoets A, et al. Quality of life among long-term non-Hodgkin lymphoma survivors. Cancer. 2007; 109:1659–1667.

Yeah. So. Not such a rosy picture, eh? Especially since I don't actually have a physician with whom to speak. What a luxury it would be to have an accessible, reassuring, supportive doctor on my team. The group of anonymous young rotating residents at Our Lady of the Damned don't, frankly my dear, give a damn. They don't have time to, and the system's not set up to enable giving a damn, even if they were so inclined.

I'm pretty much on my own out here with my high-level anxiety, low-level vitality, and astronomical financial disasters and uncertain future, not to mention the annoying little dry cough that might be the mediastinal tumor coming back but I'm not scheduled for another scan until July so there's no way to know for sure until then.

I've been hesitant to talk about all these disturbing issues because I don't want to worry my friends and family. I'm afraid if I tell anyone how distressed and tired and scared and depressed I've been feeling, they'll feel like they ought to jump in and do something. But really there's nothing anybody can do. This is what is, and I'm the one who has to deal with it.

The truth is, I am overloaded with extreme anxiety. I'm struggling to cope, but nine times out of ten I stumble and fall, mentally and emotionally as well as physically. I sometimes go for several days at a time in a state of suspended animation, where my brain seems to just shut down completely, as if it can't bear to keep thinking about what's happening. I drift around in a thick fog, unable to think or feel or act. Oh, I go through the motions. But sometimes I just sit and stare at the wall for hours, totally oblivious of time passing. Then I wake up and kick myself in the ass for being such a weak wimpy lazy bum and for not trying hard enough. Come on, self, I implore. Get the hell up and exert yourself, for godssake!

And then I stumble around, trying and trying and trying. Trying to be cheerful, trying to be optimistic, trying to be friendly and sociable, trying to think clearly, to focus, to recall simple words and follow trains of thought. Trying to act like a normal person, and trying to do the things I need to do to restore my health and pay my bills. But I just can't seem to keep it up. Inevitably, a few days later I check out again. My brain shuts down from stress overload and I'm back in the peasoup chemo-brain fog, thinking, feeling, doing nothing. The lights are on, but nobody's home.

But reading these things in the news today has been somewhat reassuring and comforting to me. Just knowing that hey, maybe it's not just me! Maybe my reaction is actually pretty normal. Maybe my inability to function is not because I'm totally inherently lame and defective. Maybe this is a whole lot harder than I ever expected it would be, and maybe it's going to take a whole lot longer than I ever dreamed it would, and maybe shutting down for days at a time is the only way I can make it. Not just to muddle through, but to survive.

I need to ask my friends and family and loved ones to please forgive me for checking out and disappearing inside myself so often lately. Please, dear ones, know that there's nothing at all you can do at this point except try to understand. I no longer need you to bring casseroles or run errands or give me rides to the hospital. I just ask that you try to imagine what it's like: try to imagine the stress of always being tired and in pain, constantly scared that the cancer has come back, always worried about running out of money and not knowing where I'm going to live next, not knowing how I'm going to work and survive. This stuff is really taking its toll on me.

I know sometimes it must look like I'm not trying hard enough, like I could and should be doing so much better by now. It looks that way to me too sometimes. But honestly, I promise you all, if I could try any harder I would. I just don't have it in me right now. Please, forgive me.

"Patients who had been treated with chemotherapy reported significantly worse psychological and social well-being and health-related quality of life..." See? It's not just me.