Sunday, September 30, 2012
Here are some picture in bed!! This is obviously Jon with the bed picture post! The tray Laura is using Tim and I made last weekend for a bed desk. Laura sometimes eats on it and plays with her ipad and reads with it. I am sitting with Mia and looking out at the world from my thrown. As all pets of mine tend to have, Mia has many names. Today I started calling her Dr. Leslie Marie Trottenstien. Why? Just cause that is how she wanted to be addressed today. Sunny Sunday. We did a family jog for 3 miles and Laura continued for another mile but the rest of us followed Mia home.
Saturday, September 29, 2012
Swim caps
Yesterday at the pool I was afraid my hair was going to remain in my swim cap when I pulled it off. I was not sure how I was going to handle it, since I had not prepared in any way for this possiblity. It didn't happen, though my hair feels attached to me by very little, and every time I touch it a bunch comes right out in my hand. Swim caps have a lot of "grab" to them and even when I am not having chemotherapy there is a fair amount of pulling.
I keep on thinking that today, or tomorrow, will be the day my hair is gone. And I keep on keeping it for one more day. Frankly, I am dreading the baldness. Not for its own sake, but for its power to identify my illness to every person I see. Up until now (thanks Daily Astorian) I simply have "health complications."
I also think that being bald will offer me some kind of grotesque milestone. When I'm bald, this will be real, I will clearly be a cancer patient having chemo, and somehow, even though at this moment I am totally in it, at the point of baldness my in-it-ness will be somehow more fully confirmed. Am I making too much of it? Hard to say. I have never been particularly vain about my hair or what I look like, but still I feel pretty challenged by this.
Actually what I think is I just need to get it over with, pass the milestone, and move on. For today, I think I will bring a hat in my swim bag, in case I have to leave my hair in the trash can.
I had coffee with a friend/Knappa neighbor who heard I have breast cancer and reached out ( it turns out she dealt with breast cancer through last winter). She pointed out that I have always hated and complained about my hair and when I get it back it will likely be somehow different. I guess that will be interesting to see... Enough about my stupid, ridiculous hair.
The Bridge Run is tomorrow and I am not running it. I am thinking about dragging Tim to a local 5k
in a couple of weeks, depending on how I feel. I'm glad there seem to be so many local events like this, so I can do last minute deciding, which is the only deciding I do now. The rest of the fam is going to our last Timbers game tonight. Matias will take my ticket. I don't think there is any last minute scenario whereby I am attracted to standing for two or three hours and in line for general admission beforehand, at night after my witching hour of done-ness which seems to happen about four in the afternoon. My plan is to take the long list of movies I have been wanting to see and see what I can get at the video store. Very exciting, I know.
Wednesday, and another treatment, cannot come soon enough. This weekend will go by slowly.
I keep on thinking that today, or tomorrow, will be the day my hair is gone. And I keep on keeping it for one more day. Frankly, I am dreading the baldness. Not for its own sake, but for its power to identify my illness to every person I see. Up until now (thanks Daily Astorian) I simply have "health complications."
I also think that being bald will offer me some kind of grotesque milestone. When I'm bald, this will be real, I will clearly be a cancer patient having chemo, and somehow, even though at this moment I am totally in it, at the point of baldness my in-it-ness will be somehow more fully confirmed. Am I making too much of it? Hard to say. I have never been particularly vain about my hair or what I look like, but still I feel pretty challenged by this.
Actually what I think is I just need to get it over with, pass the milestone, and move on. For today, I think I will bring a hat in my swim bag, in case I have to leave my hair in the trash can.
I had coffee with a friend/Knappa neighbor who heard I have breast cancer and reached out ( it turns out she dealt with breast cancer through last winter). She pointed out that I have always hated and complained about my hair and when I get it back it will likely be somehow different. I guess that will be interesting to see... Enough about my stupid, ridiculous hair.
The Bridge Run is tomorrow and I am not running it. I am thinking about dragging Tim to a local 5k
in a couple of weeks, depending on how I feel. I'm glad there seem to be so many local events like this, so I can do last minute deciding, which is the only deciding I do now. The rest of the fam is going to our last Timbers game tonight. Matias will take my ticket. I don't think there is any last minute scenario whereby I am attracted to standing for two or three hours and in line for general admission beforehand, at night after my witching hour of done-ness which seems to happen about four in the afternoon. My plan is to take the long list of movies I have been wanting to see and see what I can get at the video store. Very exciting, I know.
Wednesday, and another treatment, cannot come soon enough. This weekend will go by slowly.
Thursday, September 27, 2012
The bull
I'm reading Cheryl Strayed's book "Wild." If I were still a bookseller I would have read it a long time ago or, conversely, never read it because I don't have to convince anyone to buy it. They already are. In any case, I am no longer a bookseller and I read what I feel like when I feel like, if I can remember which books I am wanting to read on any given trip to library or bookstore.
I digress. It's a compelling book, and there is a passage that really spoke to me last night, stretching a metaphor I'm sure, but whatever.... Here is is:
The thing about hiking the Pacfic Crest Trail, the thing that was so profound to me that summer - and yet also, like most things, so very simple - was how few choices I had and how often I had to do the thing I least wanted to do. How there was no escape or denial. No numbing it down... I considered my options. There were only two and they were essentially the same. I could go back in the direction I had come from, or I could go forward in the direction I intended to go. The bull, I acknowledged grimly, could be in either direction, since I hadn't seen where he'd run once I closed my eyes. I could only choose between the bull that would take me back and the bull that would take me forward.
And so I walked on.
I digress. It's a compelling book, and there is a passage that really spoke to me last night, stretching a metaphor I'm sure, but whatever.... Here is is:
The thing about hiking the Pacfic Crest Trail, the thing that was so profound to me that summer - and yet also, like most things, so very simple - was how few choices I had and how often I had to do the thing I least wanted to do. How there was no escape or denial. No numbing it down... I considered my options. There were only two and they were essentially the same. I could go back in the direction I had come from, or I could go forward in the direction I intended to go. The bull, I acknowledged grimly, could be in either direction, since I hadn't seen where he'd run once I closed my eyes. I could only choose between the bull that would take me back and the bull that would take me forward.
And so I walked on.
Wednesday, September 26, 2012
Dinner
I have to take a time out from the all-about-me thing to say that the group of people that is my community is pretty stinking amazing. Practically the minute I was diagnosed, Moria showed up with dinner two weeks in a row, then proceeded to organize a mindblowing calendar of dinner makers. I continue to feel kind of stupid that all of these busy, working people are doing my cooking, and I suppose at this point I can probably get myself to cook, but I cannot overstate the morale boost these meals give to the family.
Like probably everyone in my situation, I never pictured myself on the receiving end of this kind of gesture. Not that it wouldn't happen if need be, just that I of course did not have a picture in my mind of me, having chemotherapy, lying around underneath a small poodle for large swaths of the day. Believe me, my year of unemployment last year did not involve watching tv during the day. This year of unemployment looks a lot different. And a lot of not spending my days screaming in frustration comes from accepting what I am doing now. Acceptance is partly fueled by our friends' practical response. Does that make sense? If everyone else is just figuring out the best and most useful way to get us through this, then I guess by default I had better also.
So, leave it to me to overanalyze the dinner calendar to pieces, when my intention is just to say thanks, you are all amazing.
One week from today I get to have another chemo. Yes, I am counting down the days. Years and years of swimming a mile in the pool has me automatically segmenting the weeks. 18 weeks of chemo. 1800 yards. As much as swimming, for me, is about an attempt to be present, it is sometimes unavoidable doing the fraction thing. 200 yards down, 1/9 done. Well, I am two weeks down and 1/9 done. The beauty of this bizarre system lies in how quickly the fraction changes. 300 yards, 1/6 of a mile. Three weeks will suddenly be 1/6 done. Of course, this is all hopeful and assuming no delays.
Today is a swim day, and the truth is my goal is always to can the fraction game and just acknowledge the lap I am on. Seriously, as cheesy as this sounds, this is why I cannot live without swimming.
Like probably everyone in my situation, I never pictured myself on the receiving end of this kind of gesture. Not that it wouldn't happen if need be, just that I of course did not have a picture in my mind of me, having chemotherapy, lying around underneath a small poodle for large swaths of the day. Believe me, my year of unemployment last year did not involve watching tv during the day. This year of unemployment looks a lot different. And a lot of not spending my days screaming in frustration comes from accepting what I am doing now. Acceptance is partly fueled by our friends' practical response. Does that make sense? If everyone else is just figuring out the best and most useful way to get us through this, then I guess by default I had better also.
So, leave it to me to overanalyze the dinner calendar to pieces, when my intention is just to say thanks, you are all amazing.
One week from today I get to have another chemo. Yes, I am counting down the days. Years and years of swimming a mile in the pool has me automatically segmenting the weeks. 18 weeks of chemo. 1800 yards. As much as swimming, for me, is about an attempt to be present, it is sometimes unavoidable doing the fraction thing. 200 yards down, 1/9 done. Well, I am two weeks down and 1/9 done. The beauty of this bizarre system lies in how quickly the fraction changes. 300 yards, 1/6 of a mile. Three weeks will suddenly be 1/6 done. Of course, this is all hopeful and assuming no delays.
Today is a swim day, and the truth is my goal is always to can the fraction game and just acknowledge the lap I am on. Seriously, as cheesy as this sounds, this is why I cannot live without swimming.
Monday, September 24, 2012
Extremes
Well, Saturday I ran five miles, walked on the beach, dipped in the ocean... Sunday I woke up so dizzy and ill I basically stayed in bed until 2:00. I think I was at Bowdoin after a hard, hard night the last time I might have stayed in bed that long, if I ever actually did. Today I feel kind of normal. I had a mile swim and some yoga, and walked the dog.
I don't think it's a matter of pacing. The stuff I'm doing I'm doing in an extremely mellow way. I am not getting my heart rate up at all, just in it for the movement and mind emptiness. I don't think there's anything I can really do about one day being one thing and another being quite another. Oh fucking well.
On another note: my skin is turning chemo gray. I feel as if I am now pale gray with dark gray circles underneath my eyes. Not helping is the sudden acne breakout, bizarre mouth interior, and strange tingling fingers. Pretty soon I expect I will be bald, to complete the picture.
Really, I'm not complaining, just reporting. I am actually glad to feel as though there is something poisonous inside me.
On another, more cheery note: my sainted husband snagged two tickets to see Bruce Springsteen in November, in Portland. I then snagged a room at the highly upscale Hotel Monaco for said sacred night. I suppose I might be dragging my exhausted ass there, hunched over in my bandana, clutching my bottle of Compazine and looking pathetic enough that the tall person in front of me sits down and lets me see, but I am still SOOOOOOOOOO PSYCHED.
I don't think it's a matter of pacing. The stuff I'm doing I'm doing in an extremely mellow way. I am not getting my heart rate up at all, just in it for the movement and mind emptiness. I don't think there's anything I can really do about one day being one thing and another being quite another. Oh fucking well.
On another note: my skin is turning chemo gray. I feel as if I am now pale gray with dark gray circles underneath my eyes. Not helping is the sudden acne breakout, bizarre mouth interior, and strange tingling fingers. Pretty soon I expect I will be bald, to complete the picture.
Really, I'm not complaining, just reporting. I am actually glad to feel as though there is something poisonous inside me.
On another, more cheery note: my sainted husband snagged two tickets to see Bruce Springsteen in November, in Portland. I then snagged a room at the highly upscale Hotel Monaco for said sacred night. I suppose I might be dragging my exhausted ass there, hunched over in my bandana, clutching my bottle of Compazine and looking pathetic enough that the tall person in front of me sits down and lets me see, but I am still SOOOOOOOOOO PSYCHED.
Saturday, September 22, 2012
Science
This neoadjuvant (fancy term for before surgery) chemotherapy is weird. I completely get the logic of doing it this way, but walking around with my big mass of cancer for another five months or so is mentally taxing. Actually, it should technically be getting smaller as the months go by, and maybe disappear altogether. According to both Dr. Garreau (surgical oncologist) and Dr. Raish (medical oncologist), it is not totally uncommon after neoadjuvant chemotherapy to find no evidence of disease in the surgical biopsies. This is called a complete pathologic response, and this is what I am hoping for. If this happens I can skip the radiation chapter post surgery, and have a better chance of normal arm function. My swimmer self really requires good use of my right arm.
Upon reflection I find that what I believe in strongly right now is science. Developments during the last decade have made my particular variety of cancer curable. Gene mapping in the last dozen years has made it possible to produce targeted therapies for several cancers, including some childhood cancers, with concrete results in the form of lives being lived. Research is made possible, at least in part, by government prioritizing science, and education. I would make an educated guess that the isolation of HER2 ( an important marker on my cancer, for which targeted, successful therapy is coursing through my veins) and subsequent development of said therapy, was at least partially funded by the NIH in the form of research grants. I am also guessing that not everyone involved in this lifesaving breakthrough went to private schools paid for by wealthy families. I imagine that some of these intelligent people went to public school.
So, I believe in science, government spending for the common good, and public school. How this thought I had about how not having surgery right away makes me feel kind of filthy with cancer turned into a political rant, I do not know. Oh well, my blog... I get to say whatever I feel like.
Upon reflection I find that what I believe in strongly right now is science. Developments during the last decade have made my particular variety of cancer curable. Gene mapping in the last dozen years has made it possible to produce targeted therapies for several cancers, including some childhood cancers, with concrete results in the form of lives being lived. Research is made possible, at least in part, by government prioritizing science, and education. I would make an educated guess that the isolation of HER2 ( an important marker on my cancer, for which targeted, successful therapy is coursing through my veins) and subsequent development of said therapy, was at least partially funded by the NIH in the form of research grants. I am also guessing that not everyone involved in this lifesaving breakthrough went to private schools paid for by wealthy families. I imagine that some of these intelligent people went to public school.
So, I believe in science, government spending for the common good, and public school. How this thought I had about how not having surgery right away makes me feel kind of filthy with cancer turned into a political rant, I do not know. Oh well, my blog... I get to say whatever I feel like.
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