Thursday, April 12, 2007

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.


Blogger Dr. Lisa said...

I have no idea what normal means anymore. I am not sure that I ever did, but now since being diagnosed with sarcoma and all of its associated "treatments" I really have no idea what normal is or ever well be again.

I don't know you, but I think you are amazing. You express things clearly at least in this internet world. Fear it is the new four letter f word.

12:20 PM  
Blogger momo said...

Dear Liz, I hear you on the breast cancer scariness. My mother's mother and grandmother died of breast cancer, so every time they call me back for a second look, even though it's just been cysts, I have experienced some of that anxiety.
I have not had to deal with what you have on your plate, but I do know what it's like to have a chronic illness that is invisible to others and to be unwilling to turn to others for help or sympathy, even when I really need it. I guess I'd like to say that your readers who care about you are here when you need to tell us about these kinds of things. It's OK to sit on the couch and fog out. It's OK to ask your loved ones for a hug or a cup of tea or just to let them know that you are feeling low but don't need to be "rescued". I hope you can be kind to yourself and not beat yourself up for feeling your feelings! I'm sending you big warm hugs from up north where we have had an April snow storm, and calling on your flowers to fill you with peace and joy.

12:31 PM  
Blogger jana said...

Having been a cancer survivor for 20+ years now, I can tell you that the fear of return never goes away even though it subsides a bit after awhile. I know that might not be reassuring, but I think it's important to acknowledge that the fears are _normal_ and will just be there. So don't beat yourself up too much about it! :)

2:16 PM  
Blogger citygrrrl said...

when the spirit moves, curling up in the fetal position under a blanket is perfectly acceptable.

you will know when it is time to kick yourself in the butt and emerge.

i think it will be very organic. the hiding, the emerging. like the tides.

7:29 PM  
Blogger Jenn said...

I'm struggling to cope, ...

...The lights are on, but nobody's home.

These two paragraphs describe classic depression. As you say, you are not alone.

You may be able to 'kick' yourself out of it. You may be able to ride it, as Citygrrrrl suggests. Don't blame yourself for it. What you've been through, it'd be surprising if you didn't pass through this phase.

I can't think of anything else to say. It all sounds so trite.

"Thinking of you." "Sending you well wishes." "This too shall pass." There is a thought behind all of these that I can't put words to. L'chaim. That will have to do.

9:34 PM  
Blogger Tarr said...

This mega-anxiety is going to be with me for the rest of my life. And really, that's no way to live.

You nailed it there.

Sweet baby. I am going to die. And you are going to die. Once we get ok with that, we each take a deep breath and keep breathing for as long as we can. And during the time we are breathing, nothing, really, is required of us.

9:50 PM  
Blogger cc said...

You're brave and beautiful and smart, Liz.

12:24 AM  
Anonymous Anonymous said...

Oh, good lord, Liz, I certainly hope no one -- NO ONE -- besides you has been telling you you're not trying hard enough!!! Cheeses!!!!

This is terribly, terribly hard stuff. Every cell in your body has been affected by this. Of course you feel like shit most of the time! It's not something you just snap out of.

You are making progress though; I can see it here like I see it in my currently bland northern garden with its crocus leaves poking up as yet virtually invisibly all over the brown, mostly mud lawn, but only blooming two or three at a time in isolated patches so far. Sometimes spring develops slowly, even spring in you.

You are not failing. You are not doing this weakly or "wrong."

No one is grading your performance. (And if anyone is, s/he sucks.)

8:09 AM  
Blogger Hieronymous said...

Busy, you've sure got a way with words.

4:31 PM  
Blogger belledame222 said...

yeah, what saraarts said. whether that's the depression or some external asshole, a severe kick in the derriere to that sentiment and that voice from here.

10:40 PM  
Blogger Trasi said...

I don't know how anyone ever gets ok with dying - I know it happens, and I know I wish that were ok with me too - something to continue thinking about. I think that is where all fears really come from. Either dying, or living but being incredibly alone.
Yet each and every one of us is alone in that same way, in that when we die, we all will do it by ourselves.
I just wish for you the ability to live while you're still living, if that makes sense. You're doing your best to do just that, and that's all you can do.

11:33 PM  
Blogger Lene Andersen said...

That moment when you realize it's "not just me", that you're normal within your... erm, peergroup? is the biggest gift imaginable. And it's a gift you've given me.

I found your blog a couple of weeks ago and spent a weekend reading your archives, completely absorbed in your fight (I was so glad to hear the chemo worked) and frequently thinking "yes! That's how it is! Exactly like that!". Different causes, similar effects.

I have chronic pain due to a lovely blend of arthritis and fibromyalgia and have been having a rough time with the arthritis for the past couple of years. This year has been awful. Although I am taking a medication that should control things any minute now (I hope), the fear has been reawakened and it messes with my ability to exercise that willful blindness of the reality of my disease that normally enables me to keep going. Not pleasant. Exhausting. Isolating (I'm too tired to have a social life). Supremely irritating.

I read this post about the "new normal" and the similarity hit me again - it's a term I've adopted, as well. I can tell you this: being in pain takes a lot of energy. And so does healing. Maybe the fog is partly your body being busy? Sorry if that sounds inane - I don't mean to minimize the reality, but sometimes, when I get mad at myself for being a lazy twit, it helps to remember that I'm not lazy - it's my body that has different priorities.

Sorry for the length of this comment - it's a lot of words to essentially thank you for letting me feel known. It made a difference at a difficult time.

12:49 PM  
Blogger Molly said...

Not that I know anything beyond what I read on your blog, but it seems to me that you are doing quite well considering what you've been dealing with. About that dry cough, it could be a side-effect of one of your meds. I know that a lot of anti-hypertensives have that side effect, possibly even the Cymbalta could do that.

4:06 PM  
Blogger pq said...

I came over here from Twisty's place, where I have often benefitted from your sage, funny, pungent comments.

I just want to say: anybody who needs you to apologize -- for anything -- is an asshole in my book.

You fucking rock.

7:39 PM  

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