Learning Experiences, a Rant
For the first time since I was diagnosed, there are real things I have trouble doing. I get breathless coming up a flight of stairs and have to stop. So how come I am supposed to be redefining myself as a person who may no longer have cancer and yet I am unable to DO THINGS! No fever yet in about thirty-six hours so I'm on track for pulmonary tests and chemo tomorrow, but what I really want to do is go see Robots with Bob and I find myself hesitating because--get this--I'd have to climb stairs at the movie theater. I think we'd rather skip the movie than sit in the front row. I know, I know, I can take as long as I want to climb the stairs and there's no reason to be embarassed, but I've always been a TAB* before and it's hard to adjust.
That redefinition idea. When I was first diagnosed I couldn't bring myself to say I was sick, because in fact, I felt no such thing. I felt great. I was working out, I'd lost some weight. I just had this diagnosis. Then chemo zapped me into the land of the sick. I started the blog. Part of my identity became that I had cancer. My goal, of course, was for part of my identity to become a person who once had cancer and I was hoping to become a bit wiser for the experience. (My big life goal for years has been to become a Wise Woman, but I've decided that is always a work in progress.)
So now I am moving into 'person in remission' (I hope) and I'll have to learn if that means I'm always aware that I am suspended between sickness and health or if I find myself walking away from Hodgkins, optimistic that I am well. People on the Hodgkin's list serve have talked about how some can't stop checking themselves, nervously feeling for enlarged lymph nodes. I don't know what I'm going to be like. I know what I'd like to be like, but hell, I'd like to be taller.
But that's all really hard to do when I can't catch my breath. I'd stomp around except I get all out of breath when I do that. Normally I'd be taking decongestants and cold medication but my doctor wants me on a drug holiday to see if 1. I have no fever and 2. how bad toxic side effects really are without using stuff to control them. Easy for him to say. (Virtual stomp, stomp, stomp. I am stomping around, blackly here, shaking my fist impotently at fate and since this is all virtual, I don't look silly, okay?)
I used to have a button attached to my cubicle back before I married and could stop being a wage slave. It said, 'Oh No, Not Another Learning Experience.' This is probably Good For Me. It will teach me Empathy and Compassion. (Especially while driving where I have no patience for people who drive slower than me.) But like most learning experiences, I'd rather skip the experiencing part.
Stomp stomp stomp.
(*TAB: Temporarily Able Bodied. It's the opposite of disabled, and takes into account that most of us will be disabled somehow, somewhere, sometime, if we only live long enough.)
That redefinition idea. When I was first diagnosed I couldn't bring myself to say I was sick, because in fact, I felt no such thing. I felt great. I was working out, I'd lost some weight. I just had this diagnosis. Then chemo zapped me into the land of the sick. I started the blog. Part of my identity became that I had cancer. My goal, of course, was for part of my identity to become a person who once had cancer and I was hoping to become a bit wiser for the experience. (My big life goal for years has been to become a Wise Woman, but I've decided that is always a work in progress.)
So now I am moving into 'person in remission' (I hope) and I'll have to learn if that means I'm always aware that I am suspended between sickness and health or if I find myself walking away from Hodgkins, optimistic that I am well. People on the Hodgkin's list serve have talked about how some can't stop checking themselves, nervously feeling for enlarged lymph nodes. I don't know what I'm going to be like. I know what I'd like to be like, but hell, I'd like to be taller.
But that's all really hard to do when I can't catch my breath. I'd stomp around except I get all out of breath when I do that. Normally I'd be taking decongestants and cold medication but my doctor wants me on a drug holiday to see if 1. I have no fever and 2. how bad toxic side effects really are without using stuff to control them. Easy for him to say. (Virtual stomp, stomp, stomp. I am stomping around, blackly here, shaking my fist impotently at fate and since this is all virtual, I don't look silly, okay?)
I used to have a button attached to my cubicle back before I married and could stop being a wage slave. It said, 'Oh No, Not Another Learning Experience.' This is probably Good For Me. It will teach me Empathy and Compassion. (Especially while driving where I have no patience for people who drive slower than me.) But like most learning experiences, I'd rather skip the experiencing part.
Stomp stomp stomp.
(*TAB: Temporarily Able Bodied. It's the opposite of disabled, and takes into account that most of us will be disabled somehow, somewhere, sometime, if we only live long enough.)
posted by Maureen McHugh at 11:13 AM
12 Comments:
I've been "disabled" since I was 12 when I developed asthma. I haven't been able to walk up stairs without getting winded since then, no matter how much I exercise. By 15 my lungs were scarred so I'll always be huffy puffy on stairs.
Be angry. Stomp loudly. Illness robs us of so much. It takes and takes and the 'gifts' it leaves us with are meager by comparison.
Although, I think getting out of High School PE was awesome--almost made it worthwhile.
Hang in there and I'll be sure to stomp a couple times for you just so the universe knows we Mean Business.
Michelle
Maureen, you are being treated for cancer. The treatment is debilitating. (Indeed, its extremities account for all your ailments; the Hodgkins hasn't had a chance to cause a symptom.)
Even if there were something to this notion that you should now think of yourself as being somehow post-cancerous -- and there isn't; ask for your doctor -- you are still undergoing the ordeal of chemotherapy and suffering its debilitating side effects.
You are, alas, not yet off the hook for anything. So don't load yourself with the responsibility of feeling better than you do.
Instead of walking down the stairs,
perhaps you should dance (slowly, and take your time).
I read along, hoping/believing that TAB stood for tough-assed-broad. Well, maybe it does, in addition to "temporarily-able-bodied."
My mother had a small galaxy of ailments, including chronic bronchitis. Because she used, wittingly or otherwise, her illness to control what was happening around her, I developed little or no patience with it. And when I started developing asthma, I had little or no patience with myself. Wound up passing out from sheer lack of air on one occasion, and coming damned close to it on a couple of others, and yet I still kept believing that, somehow, I should be able to tough through the asthma rather than letting it control me. Until finally, in my 40s, a nice pulmonologist informed me that doing this was stupid, as it increased the damage to my lungs. At which point I (finally) stopped trying to think my way through the wheezing.
Being breathless is scary. No amount of rationalization or bravery is gonna chase it away. Take care of yourself. Robots will still be there when you're feeling a little less breathless. Your news about the Hodgkins' is wonderfully good, but it's more like you can see the shore in the distance; you haven't landed there yet. So cut yourself some slack.
Okay, okay. You're all right. And I'm aware that even if I'm clear of Hodgkins, I'm far from clear of chemo and the worst is yet to come. But before, except for the day of chemo, if I wanted to do something I was pretty much physically able. This is SO IRRITATING.
But the good news is my temp hasn't gone above 100, never reaching the official fever threshold of 100.5 so I'll call in today (Monday) and see if I can schedule chemo for this afternoon. I'll get pulmonary tests in the morning.
I had spinal surgery 2 years ago, recovered much too slowly. And I can completely sympathize with your avoiding movies because of the stairs. Had the same problems. But, eventually got back to my "real" self. Just enjoy the remission as best you can and get a good DVD. It's a beautiful day, gaze out the window and let your poems flow (good and bad). Or treat yourself to a hot fudge sundae.
I've been thinking about starting a new society, called "People Who Refuse to See Movies On Opening Weekend," or "PWRtSMOOW" for short (since seeing a movie on opening weekend means that you're responding to the hype, not because of any word of mouth). So, in my opinion, refusing to see "Robots" this weekend is completely laudable.
TAB? Hmm, have you considered calling yourself "GBD"? (Gonna Be Dead. Which is definitely true, someday.)
I know people who habitually prod their lymph nodes even though they've never had lymphoma, so I wouldn't worry about it too hard.
So how much more chemo, again? When's it over?
Off to try for chemo again. Today without bleo even though breathing is better today.
GBD? Well, people might be a little disturbed...
Four more chemos after this, ending, hopefully, the second Monday in May.
Thanks for sharing your experiences.
My mom always says that on long staircases, they should have little tables set up on the landing so that you can stop for a drink. Not a bad idea... maybe you could compose a team?
I can tell that Geoff doesn't have a nine-year-old son!
Maureen, I got a kick out of your saying you've wanted to be A Wise Woman. That is the last thing in the world I have ever wanted, so you can have my portion, if I get any at all!
The problem with being a wise woman is that then people come to you for advice.
I always wanted to be A Private Detective. Can you tell?
Mary Turzillo
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