Monday, January 26, 2009

good news

I got a call from my ENT this evening to tell me good news. What he sent to pathology from the inside of my cheek was just granulation tissue. Suddenly I am literally breathing easier (though I wasn't consciously aware I was NOT breathing easily before the phone call). Work has kept me nice and busy so most of my anxiety about this was pretty much supressed, except when I woke up in the middle of the night worrying, and until I heard my docs voice when I answered the phone then it hit me hard for just a second before he got out that it was good news.

My throat-stretching surgery has been moved to Friday. I will definitely post something before then. But tonight I need to have some soup, do a variety of small work-related tasks and get a good night's sleep. Thank you all for your good wishes about this.

Friday, January 23, 2009

An update on me

I certainly hoped, when I started this blog, to write something more than once a week. However, the past week has been busy in all sorts of ways. It's the beginning of the semester and at the last minute I took on an additional online course as an overload. I didn't take it because I wanted the overload pay, which is not very much at all, but because there was a real need for someone who understood the online software SUNY is using to teach it online. The version of the course I got from the person previously teaching it has required lots and lots of fixes. I finally have the first two chapters fixed which means I'm two weeks ahead of my students and hope to stay that way. That's all I have to say about that, as Forrest Gump would say.

Then there was the Presidential inauguration. I spent a lot of time reading, watching news about it and, of course, watching the event itself. I watched it at work in the coffee bar next to our library. Students were not back yet but it was still such an emotional moment for everyone watching. I know I teared up, though I wasn't expecting to. I am just so grateful we have such a truly inspirational leader in our new president as we deal with all the repercussions of the previous administration's lack of responsibility in dealing with the hard problems we face. And I am so grateful he is not white - that we finally have someone in that high a position who was able to overcome the racism that still exists in our country. And I am so grateful for all the people, of all races, famous and not, who worked and marched for civil rights, and set the stage for this to happen.

A little after the inauguration I had an appointment with my ENT, Dr. S. The first outcome of that appointment is that I'm scheduled for another esophageal dilatation next week. I need it-I can tell my throat is narrowing when I swallow--but I'm not looking forward to it and I'm a little worried about what would happen if the worst complication--a perforated esophagus--happened when I am having it here in Ithaca. When that worst case happened at Brigham and Women's they put a stent in. I don't think they can do that here. On the other hand, I do not want to have to trek to Boston for this procedure every 2 or 3 months when I need it. So I am hoping for the best. I do trust Dr. S. to do the best he can for me but I really should ask him what would happen if there is a perforation. I was scared to ask. I'm a little too good at not asking about what scares me and he is a little too good at not telling me about what might scare me.

And, speaking of scared, he also saw something in my cheek that concerned him a little until it started coming off as he was poking at it with the tongue depressor. He said that is not what a tumor would do. Still, he snipped it off (and made my mouth bleed) and sent it to pathology just to be safe. He said I would hear next week but what he thinks it is is a "granuloma" which is basically a lump caused by inflammation. It was right next to where they cut into my cheek for the cornoidectomy I had last summer. But the fact that he isn't positive it's not cancer still scares me

So I came home from that having entirely lost my inauguration high and instead feeling scared and self-absorbed by it. I wish mentally I was better at not letting that sort of thing totally pre-empt whatever else life is offering me. I also wish I was not so good at using repression as a way to deal with the fear. Since then, I have been working hard prepping classes and helping advisees and that has helped because I forget about that pathology report I'm waiting to hear about. But that's not so good either because I need to remember to call them Monday and ask about it if I don't hear from them and I'm afraid I'll be working so hard to forget about it I'll also forget to call (until 3 in the morning when I will lie awake worrying about it).

Anyway, I soon as I hear for sure the good news that this tiny lump in my cheek is not cancer, I will post about it here. Maybe that will help me remember to call. I am going to post this as an update, then post something else related to something I read recently.

Saturday, January 17, 2009

Poetry for the day

Just a short post today since I am busier than I thought I'd be this weekend, having taken on an extra online course as an overload for a variety of reasons. Once I get on top of that a little more I hope to write a longer post here in the next couple of days.

I heard from a couple of friends, after my last post, about how much they also loved Mary Oliver, so I thought I'd share with anyone reading another poet I love; David Whyte. I heard David Whyte talk about 5 years ago at a conference I went to. Essentially he was talking about about the relationship between poetry and work, about the way work should appeal to our passions and engage us, how it should should speak to the person we are at our core and to the person we want to become. It was a moving and inspiring talk, punctuated by his own poetry. If any of you have an opportunity to hear him live, take advantage of it! He also has a book called "Crossing the Unknown Sea, Work as a Pilgrimage of Identity" that addresses some of what he said in the talk I attended and is well worth the read.

Anyway, I am very much back in the thick of work right now so I looked up David Whyte's website and found he has some of his poetry on it. I encourage you to check out the whole thing but offer you today a link to this poem of his which I love:

Tuesday, January 13, 2009

winter afternoon

Not every post I make is going to be about the aftereffects of my cancer battle and disability. I'm sure some of you reading along are glad to hear that.

Yesterday I was driving home from work at about 4:00 in the afternoon. Much though winter seems harder to get through as I get older, I have to admit I find it beautiful, at least from the warm interior of my car. The trees were still covered with that thick white snow on their branches that looks like frosting. It was a partly sunny day and the sun was out when I was driving the first part of the way. I love the way the shadows are long and bluey-purple this time of year even when it isn't that late in the day and the sun has this golden slant to it. In the farm country that I drive through in Dryden everything seems so peaceful and silent on these winter afternoons when the fields and the hills around them are covered with snow and long shadows.

When I got home there was a package in the mail. Some books I had ordered for myself to see me through the winter (and probably the following summer too - I have quite a little pile of books to read right now). One book was a book of poems by Mary Oliver called "Thirst". I love Mary Oliver. I think one of the best gifts anyone could give themselves is a book of poetry by a poet they love.

Here is a piece of one of the poems in that book called "Walking Home from Oak-Head"

There is something
about the snow-laden sky
in winter
in the late afternoon

That brings to the heart elation
and the lovely meaninglessness
of time.
Whenever I get home--whenever--

somebody loves me there.

Sunday, January 11, 2009

Living with fear of what might be

It’s been said so often it almost becomes meaningless but these are scary times. The economy is bad all over and it’s bad in academia. In the state of New York, which has lost a huge amount in revenues from Wall Street, there are big cuts being demanded from the SUNY schools, including the community colleges. Next week, when I officially go back to work (unofficially I’m already back at work, those of you in academia know how that is), we’ll be hearing exactly what this means for our college. It’s a little less scary than it could be because we have already been reassured in a letter from the president of the college that as of now they don’t foresee layoffs. We are lucky that layoffs are not a possibility. We are only lucky that way because we have more students than ever who are enrolling, and who we must serve. Since we get funding by the state per FTE, the increased student enrollment cancels out some of the cuts. Some. There was a conference I wanted to go to (in Florida, but that wasn’t why I wanted to go…really) and I doubt there will be any travel money for it. Compared to how it could be, though, that seems like a minor complaint.

My brother, who just started a tenure track faculty position, is also at a place struggling with major funding cuts and anticipating layoffs. A scary place to be when you’ve given up a fairly secure job in a city you love and moved halfway across the country just for the job you are now threatened with losing. It’s not clear what will happen with his position but it is clear that there are probably other cuts they’d make before they get to his position, so he is hoping for the best and trying to live with the worry caused by a possibility of the worst.

I feel lucky I am not dealing with that at my job right now, but I still know the feeling. I know it every time I have a cancer check-up. I try not to think about the worst case, and I am actually pretty good at defenses like repression and denial in terms of thinking about the possibility of cancer coming back on most days. But usually by the night before a check up, my defenses crumble and I can’t help but think about it. I often can’t sleep or can’t sleep well because I am thinking about how I’ll feel if the doctor tells me there’s a lump or something scary in the blood test or something they want to biopsy. And this has happened. I have had a couple of false alarms, one of which required a biopsy to disconfirm, since my treatment was over. So I know that what I will do is tell myself it could be a false alarm and live in fear until I get the results. “And then” the worst-case –scenario-builder in my mind whispers “what if it IS cancer?” And I walk down that path a little ways. I first tell myself it would depend on whether it was cancer I could beat again or cancer that had progressed so far I would never beat it and would only have the option of playing for a little more time. “And what if it’s the kind you can’t beat” says the fearful part of me. The answer is, I don’t know. I don’t know how I’d react. But I do know that thanks to cancer support groups and cancer support boards on the web, I have seen people who have gotten that news deal with it. They deal with it. That’s the amazing thing about the human psyche is how we end up dealing with things that, ahead of time, we might have thought were intolerable.

The year after all the cancer treatments I got myself a book called “Dancing in Limbo” by Glenna Halverson-Boyd and Lisa K. Hunter. Glenna is a tongue cancer survivor, like me. It’s a wonderful title, isn’t it? This book addresses dealing with fear and the unknown that many cancer survivors confront after treatment and I can’t recommend it enough to any of you who are going through the cancer battle, or caring for loved ones who are going through it. In a chapter on dealing with fears of recurrence, they recommend the following ; identify triggering events, accept help from others, learn what calms our fears and “seeing the other side of fear”.

In thinking about the situation my brother and so many other people are in right now, in terms of fearing a job loss, I wonder how much these recommendations can generalize to that (very different) situation. Triggering events for the fear might be real things that shouldn’t be ignored such as hearing at a faculty meeting that some layoffs would occur, as my brother heard recently. But there are other triggers. I think also a lot of people are fearful not because of anything that is a specific threat to their job but just because of what we hear about the economy and the unemployment rate on the news. Sometimes just understanding what is triggering our fear, and seeing how fear is a normal reaction to events in the world can help us decide how we want to act on the fear, or not act. My brother told me about how a recent University-wide faculty meeting, in which the possibility of layoffs was openly discussed, actually made him feel better because before then people in his department had dismissed his concerns and he didn’t know if he was being paranoid or being realistic to be afraid. He now at least knows he is being realistic.

Accepting help from others seems pretty straightforward. Maybe someone can offer help in terms of finding another job, but there's also a lot of help that comes from just feeling like someone else hears, understands and doesn't dismiss your fear. Feeling you can’t discuss your fears with anyone just increases fear in my experience. I hope the recent conversation I had with my brother helped him a little and I hope he talks to other people too. And then there’s learning what calms your fears. This is sometimes trial and error. When I am worried the night before a cancer follow-up doctor’s appointment, I actually find watching TV can help me eventually forget about my fears until I get so sleepy I have to go to bed. I also find myself saying the serenity prayer to myself. I first learned that prayer in a very different stage of my life when I was dealing with an alcoholic ex-husband, but the philosophy in it works for any situation where you do not have all the control. Which would be most situations in my experience. I know it's pretty well known but I include it here anyway:

Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Finally, sometimes it seems to me there’s nothing to do but just be with the fear instead of doing anything to try to push it away. And that brings us to what Halverson-Boyd and Hunter discuss as “the other side of fear” which is just reminding ourselves that there are a lot of things we have no control over. What we will die of is one, though we can avoid doing things we know increase the likelihood of dying of a certain disease. A bad economy is another, though we can do things to try to find steady and secure employment. We have much more control over how we live our present life and respond to the challenges we are faced with. The other side of the fear of death is that it can sharpen our enjoyment of life. We may have to live in limbo, but we can dance while we're there. Perhaps the other side of fearing a job loss is that it can sharpen our enjoyment of the job we have as well as helping us appreciate all the other aspects of life we enjoy that can’t be taken away just because a job is lost. My wish today is that anyone reading this who is living with that fear can also find the “other side” of it. And, of course, that this bad economy turns around soon.

Thursday, January 8, 2009

Dreams of Eating Mindlessly

"Last night I dreamed I ate a ten-pound marshmallow, and when I woke up the pillow was gone."
Tommy Cooper

Last night, I had a dream where I discovered I could swallow normally. In this dream, I was in the kitchen of the little Arts & Crafts bungalow I owned in Oklahoma. I really loved that house more than any other house I have lived in and I think it shows up in my dreams when I am longing for something in the past. Anyway, in part of this dream I was making a meal with some friends in the kitchen. There were maybe three or four other friends (in reality, it would have been very hard to fit that many people in the kitchen of that house) and I was cleaning some lettuce in the sink and talking to them about my swallowing problems. It's unclear in my memory of this dream who the friends were. Maybe it was unclear in the dream itself. Just friends.

I was telling them (as I tell people in real life) "I really can't swallow anything that isn't liquid, pureed, or completely smooth and creamy like yogurt. I can't swallow anything that is at all solid, even if it's soft" But,as I said this, I suddenly realized I had been, without even thinking about it, breaking off little pieces of lettuce as I was washing it and putting them in my mouth, chewing them, and swallowing them! When I realized that, I consciously broke off a piece of lettuce, chewed it really well, and swallowed it without effort. I was amazed and delighted and so excited that I could swallow more than I had thought I was able to swallow.

Then I woke up. It took me a few minutes to realize that I hadn't really had a swallowing breakthrough. I hadn't really been eating little bits of lettuce. I was still stuck with liquid, smooth and pureed. It was disappointing. But this struggle has been going on for so long that it was also kind of like when you dream you can fly and then wake up and realize you can't. Waking up wasn't so much heartbreaking as just being brought back to earth.

What interests me, though, is that the dream wasn't just about eating different and better food (I do miss salads a lot however), it was about eating without effort. It was about eating without even being aware of what I was doing. Eating mindlessly. Which I certainly did more than I should have in real life back when I could eat normally. It might be what made the dream seem so vivid and real. The way you can be nibbling at something without thinking and then all of a sudden wake up to what you're doing. Only in this case waking up to what I was doing (that is waking up to what I was doing in the dream) was this delightful revelation that I had an ability I thought I had lost. If dreams are about wish-fulfillment, as Freud believed (and I really don't think that they always are), this dream was not just a fulfillment of my desire to be able to eat more sorts of food, but of the desire to not have to think about it, and consciously work at it, every time I swallow.

There are Buddhist meditations on eating mindfully and they can be revelatory in terms of waking up to the details of eating that most people normally overlook. (see an example of this here: In fact, many people advocate bringing mindfulness to eating in order to overcome problems with overeating. There is even an organization entirely dedicated to mindful eating :

However, I have been forced to engage in very focused and mindful eating every day because my swallowing is so not normal. I have tried to treat it like a gift of a mindfulness practice I can't escape. Instead of focusing on my breathing, I am focusing on the liquid in front of me, how it smells and tastes, where it is in my mouth, whether it feels like it is going down the right way and whether my muscles feel like they are going to do what they need to do to get it down. Actually, it involves focusing on the breathing too because you hold your breath when you swallow. Everyone does this. But since I often have to do a double or even triple swallow to really get something past my worn-away epiglottis, the holding my breath thing is also more conscious. So, in my dreams, I don't want to be mindful, I want to be mindless. I would LOVE to swallow something mindlessly.

Maybe someday I will again. But right now, that would be kind of like being able to fly.

Why I'm blogging

I feel like I should have a big meaningful introduction to my first blog post. But I really just want to get started writing about something. So I'll be quick with the general introduction.

I decided to start a blog for mutliple reasons. First, I have been reading the blogs of a few friends for a while now and doing that helps me feel like I know what is going on in their lives even when neither of us have time for phone calls or email. Of course, monologue is not the same as dialogue and this is not intended to be a substitute for once in a while picking up the phone. However, those of you who know me know that since treatment for oral cancer three and 1/2 years ago, my mouth has been hypersensitive and often it's just sore by the end of the day and picking up the phone isn't something I can do as often because of that. I hope when it hurts too much to talk, this is a better alternative than no communication at all.

The second reason I thought my own blog would be a good idea is I want to work on my writing more regularly. I do have a journal I write in, but that is not writing I feel I need to polish, it is only for my own consumption. In the past, when I have had occupations where I had to write more often, for example in graduate school, I became a better writer by writing, and I remember clearly the pleasure of reading a page that I had labored over to get it to say exactly what I wanted in a well-crafted way. I don't get that opportunity on the job as much anymore. So I hope writing blog entries might help me work on my writing as well as communicating what is happening in my life.

My last reason is that I think I do have some unique perspectives on things as a double-cancer survivor, striving to live with a lasting disability, and as an avid consumer and applier of psychological research and theory to my everyday life. I hope those of you who like me enough to read this blog will agree. With that, I begin my blog.