Monday, March 20, 2006


I'm unable to stop collecting. I've been collecting stuff for the hospital, for being sick. Last week I finally made myself contact places where I was originally scheduled to teach or something and say, 'Hey! I'm all right!' But it was hard to do. Risky.

When I was first diagnosed with Hodgkins, I felt weird telling people I was sick. And I couldn't use the word cancer because it seemed wrong, like claiming a distinction I didn't deserve. Sure, sure, Hodgkins Lymphoma is a malignancy, but compared to breast cancer, or colon cancer, or worse, lung cancer or pancreatic cancer, it wasn't really a big deal. I mean, I'd spend six to eight months having an interesting and sometimes uncomfortable experience and then I'd be done. There were times during treatment where I would find myself thinking, 'this chemo stuff is so unhealthy, I shouldn't be doing this.' And then I'd catch myself and think, 'you idiot, if you didn't do this, you'd die.'

When Dr. Schnur called and said something had shown up on my CT Scan, I knew that it was Hodgkins, and I knew this time, I was sick. Well, I was half right. It wasn't Hodgkins. Technically, I was sick, although I didn't feel sick. But mentally I went places I hadn't really gone when I was diagnosed the first time. Now I can't shake the feeling. I walk on eggshells. I can't convince myself I'm not sick.

Part of it is that I have a persistent sore throat and fatigue. Or is that hypervigilence? (The politically correct term for hypochondria.) Maybe it's symptoms. Maybe it's anxiousness.

The four weeks I thought I was relapsing were hard. At first we were careful not to make too much of the news--the tests were preliminary after all. But I knew what the test meant. And I was pregnant with the secret I was carrying, just as I was carrying silent and secret disease. Then after the PET Scan I had to start arranging my life to a new reality. Emailing people and telling them. Changing the blog. Meeting with doctors and getting more tests and meeting with still more doctors. It simplified life down to one thing, a very important thing. I clamped a lid on my feelings. At week two, I'd go to a doctor's office and they'd take my blood pressure and it would be high (at least for me.) By week four, my blood pressure was back to it's usual low. I learned a lot about being a patient during the first bout and there was a familiarity.

And, of course, I was important. The center of a life or death drama. I wish I could tell you that didn't matter, but it does. An enormous medical establishment was moving to do tremendous things to and for me. Everybody wanted to talk about me. About my illness, my sedimentation rates, my pulmonary function, my plans.

Leaving this behind was both a tremendous relief and very disorienting. How do I explain to any sane person that I am celebrating and mourning?

It was a little like a bomb went off in the middle of my life. It's amazing how well things have been repaired. But I keep flinching at loud noises. The best thing so far has been work. I'm working on a freelance project and like all these projects, it is a drama of its own.


Blogger Madeleine Robins said...

Celebrating and mourning makes perfect sense to me. Both times, when I was pregnant, at the point where I learned the sex of the babies I celebrated the daughters I was to have--but also had to mourn the sons I wouldn't have, and all the possibilities and futures that went with them. A door--a door to a scary place, but a door nonetheless--has closed when your foot was raised to step through. Why wouldn't you be disoriented?

Time, of course, is the thing.

March 21, 2006 11:15 AM  
Blogger Hal said...

Hi Maureen,

You commented on my blog yesterday, so it's only right that I return the favor.

My family has had experience with Lymphoma - the non-Hodgkins kind - so I know exactly what you are going through. All I can tell you is to be strong and courageous each and every day, and know that the best will happen.

Good luck! :)

March 21, 2006 4:38 PM  
Blogger Maureen McHugh said...

Hal, my comment was a lot more frivolous!

March 21, 2006 5:41 PM  
Blogger Karen Sandstrom said...

This is a VERY unfrivolous thought, but when I was reading your post I couldn't help (like Madeleine) thinking about the uncertainties around pregnancy and birth. And then the uncertainties that arise when someone close to us dies. I'm not sure how you could avoid feeling a kind of emotional whiplash that might (or might not, how do I know) be similar to other situations in which life plunks us face to face with The Big M: Mortality. It's just really difficult to get return to that place where we kid ourselves that we and everyone we care about have always been here and will always be here. Again: How do I know? I haven't been through anything like what you're doing now. And yet what you describe is so familiar.

March 22, 2006 8:58 AM  
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March 24, 2009 1:57 AM  

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