Hi, I know I've been a little remiss here. I know the mothers really like to see something here, so I am going to attempt to fill some space with the sadly-nothing-to-report that has been my life this week. The sad fact is, this cancer thing, like sailing, or lifeguarding, or any number of examples, can be classified in the boredom-punctuated-by-terror school of activities. Honestly, mostly it is really so fucking boring...
Three weeks is a long time to wait between things happening, and those between times consist, as you know, of trying to get some excercise, making myself useful in some easy way (this week it was dealing with the remaining apples off the trees outside), reading, and watching the tube. I started Mad Men, which is actually not boring at all, but exciting! Should I ask the plastic surgeon if I can get the breasts of head secretary Joan? They are about as impressive as I've ever seen...
Jon suggested a topic if I didn't know what to write about. He said to complain about husbands! A rich, full, rife subject matter all women can appreciate. Well, even though he does annoy me with his penchant for wanting to take pictures of my bald, white, zitty head, he is actually doing quite the bang-up husband job, so I will take a pass this time.
My boredom has given me time to make some observations about having cancer, and to realize and acknowledge some strange thought processes.
1. It's amazing how many times a day it occurs to me that the people I know are living their lives. It is cliche, but I am constantly acknowledging the world going on without me, while I wait in my pajamas. Almost exactly these words float into my head at any given moment, as I remember that I have cancer and am doing my waiting, like a literal surreal chunk out of my life with solid, concrete borders. This is hard to explain and I am not doing the best job of it. I could be at soccer games, and doing normal things like other people, but it seems to require a lot of a certain kind of energy I don't have to chit chat, and be on the receiving end of concern. Jon is out public all the time answering questions about me and being on the receiving end of peoples' concern, and bless him, he is good at it. Don't get me wrong. I am so grateful to my community for caring about me. It's just that as I said way back at the beginning, I am not a person who likes attention, so this will be challenging. And it is.
2. A thought is constantly popping into my head unbidden and unwanted. It is this: He/she doesn't have cancer. Believe me, I really don't want anyone to have cancer. But I see people and it just pops in. Even at the mention of someone it pops in. The stupidity behind this thought is I actually have no fucking idea if the aquaintance I just saw at Safeway has, had, or has lost someone important to cancer. Statistically speaking, all of that is as likely as not. I feel like a terrible person having this thought, but I have it, like an involuntary reflex, all the time.
3. I feel kind of infantilized at times. Maybe it's because I'm bald, like a baby (though my two babies were never bald). I have no idea how to explain why I feel this way, which leaves me an out and something to write about at such time as I analyze it to pieces and figure out how to articulate it.
4. The most important one. I am well aware that there are far, far, far worse things than what I am going through. The 14-year-old son of an old friend died last week. My lack of sleep this week is wholly unrelated to my stupid, fucking, boring cancer.
Saturday, October 13, 2012
Tuesday, October 9, 2012
An up note
On the up side, I just bought tickets to The Book of Mormon. January, from what I could calculate it will be between chemo and surgery. Perfect!
No intellect
Life is wierd on a lot of levels right now. One of them is kind of a Catch-22. When this all started, it occurred to me that I have six or eight months of time I can't spend doing many of the things I normally do, but I had a pretty wide range of things I would "take care of" during this down time.
You can laugh if you like, but the range went from figuring out what I am doing with my life, studying for and taking the GREs, and figuring out and applying to graduate school, to knitting all the holiday gifts. Seriously, I can't seem to do either of these disparate things. Even I am laughing at my audacity, thinking I could deal with graduate school. I can't even choose a pattern to knit on which I think I can stay focused.
My brain has lost some basic focus during chemo, which I am aware happens. This, I am told, is one of the cumulative effects, so it will get worse over the four or so months, and probably somewhat beyond that. I was visiting with a friend yesterday, and we were acknowledging the temporary loss of my intellectual life. Being on the school board, as exasperating as it could be, was an intellectual pursuit for which I had a great deal of passion. Issues were mulled and debated, decisions were made, data were pored over. I was going to continue studying Spanish this year, but low enrollment precluded the class happening. Frankly, I don't really know whether I would have been capable of learning right now. I think I would have audited and just got what I could. I was also in the midst of job hunting. My resume was reworked, prime, and ready to go. I knew I did a good job on that because I had a call about a good, decent job at Columbia River Maritime Museum the afternoon before I started chemo. Yes, I think I could work many of the days of the chemo cycle, but at that moment there was a lot of complete unknown, and I was not comfortable trying to secure new employment.
So, I am paused, as it were. I do read. I read the new Michael Chabon, and am in the middle of the new Junot Diaz. I know that both are excellent, and I know my other brain would have been passionately engaged, but I did not get fully in. Both feel a little hard right now, which makes a former bookseller feel a bit pathetic. Even these are not, you know, that challenging; they are simply good, literary fiction, the stuff I love. I have really been wanting to read Jeffrey Toobin's new book on the Supreme Court, but I am uncertain whether the focus is there. I am a wierdo who LOVES Nina Totenburg reading Supreme Court transcripts on NPR. I loved Toobin's book "The Nine," and actually found it, um... suspenseful in a Supreme Court geek sort of way. But these days I don't think that is me.
This lack of the intellect required even to knit is temporary, I know, and is another item on the list of things I just need to accept. At least I can swim.
You can laugh if you like, but the range went from figuring out what I am doing with my life, studying for and taking the GREs, and figuring out and applying to graduate school, to knitting all the holiday gifts. Seriously, I can't seem to do either of these disparate things. Even I am laughing at my audacity, thinking I could deal with graduate school. I can't even choose a pattern to knit on which I think I can stay focused.
My brain has lost some basic focus during chemo, which I am aware happens. This, I am told, is one of the cumulative effects, so it will get worse over the four or so months, and probably somewhat beyond that. I was visiting with a friend yesterday, and we were acknowledging the temporary loss of my intellectual life. Being on the school board, as exasperating as it could be, was an intellectual pursuit for which I had a great deal of passion. Issues were mulled and debated, decisions were made, data were pored over. I was going to continue studying Spanish this year, but low enrollment precluded the class happening. Frankly, I don't really know whether I would have been capable of learning right now. I think I would have audited and just got what I could. I was also in the midst of job hunting. My resume was reworked, prime, and ready to go. I knew I did a good job on that because I had a call about a good, decent job at Columbia River Maritime Museum the afternoon before I started chemo. Yes, I think I could work many of the days of the chemo cycle, but at that moment there was a lot of complete unknown, and I was not comfortable trying to secure new employment.
So, I am paused, as it were. I do read. I read the new Michael Chabon, and am in the middle of the new Junot Diaz. I know that both are excellent, and I know my other brain would have been passionately engaged, but I did not get fully in. Both feel a little hard right now, which makes a former bookseller feel a bit pathetic. Even these are not, you know, that challenging; they are simply good, literary fiction, the stuff I love. I have really been wanting to read Jeffrey Toobin's new book on the Supreme Court, but I am uncertain whether the focus is there. I am a wierdo who LOVES Nina Totenburg reading Supreme Court transcripts on NPR. I loved Toobin's book "The Nine," and actually found it, um... suspenseful in a Supreme Court geek sort of way. But these days I don't think that is me.
This lack of the intellect required even to knit is temporary, I know, and is another item on the list of things I just need to accept. At least I can swim.
Sunday, October 7, 2012
Marathon day
It's Portland Marathon day. Not that I was planning to run, I don't know whether I will do one again or not. I like to think that sometime I'll do another. Today, though, I am sitting with the ipad tracking three friends running, me from the relative comfort of my bed. I'm deciding whether I can tolerate swallowing some Tylenol (why do they make Tylenols so large?) along with the pill I already took for nausea. This seems to be the hard week, three days after treatment to a week or week and a half after that. There is nothing to do, really, but tolerate it, and go outside for a bit at some point.
I am wishing I had done a bunch of marathons prior to this. One was amazing, and kind of like childbirth, it teaches a person to get through the seemingly impossible to the other side. Triathlons are somewhat like this, though because of the variety, not always quite as mentally taxing. However, having only done up to the Olympic distance, I am well aware that the half Ironman and beyond would certainly provide that sense of clawing through the impossible. Once the time passes about three hours, for me anyway, all bets are off as far as feeling sane during any of it. The focusing is such a good excercise. I wish those experiences were translating a little bit better to this one I am having now. I guess when this winter/spring is behind me, I may be looking for a sense of the impossible again sometime. There is something sooooooo satisfying about completion of these bizarre challenges, and without the disgustingness of it being about cancer I think any and all of it will be immensely fun. You know, in that suffering fun way...
I am going to get out of bed and go for a run. I have been intending this for the last couple of hours, so hopefully I am actually about to act.
I am wishing I had done a bunch of marathons prior to this. One was amazing, and kind of like childbirth, it teaches a person to get through the seemingly impossible to the other side. Triathlons are somewhat like this, though because of the variety, not always quite as mentally taxing. However, having only done up to the Olympic distance, I am well aware that the half Ironman and beyond would certainly provide that sense of clawing through the impossible. Once the time passes about three hours, for me anyway, all bets are off as far as feeling sane during any of it. The focusing is such a good excercise. I wish those experiences were translating a little bit better to this one I am having now. I guess when this winter/spring is behind me, I may be looking for a sense of the impossible again sometime. There is something sooooooo satisfying about completion of these bizarre challenges, and without the disgustingness of it being about cancer I think any and all of it will be immensely fun. You know, in that suffering fun way...
I am going to get out of bed and go for a run. I have been intending this for the last couple of hours, so hopefully I am actually about to act.
Friday, October 5, 2012
Waiting, with Dog
Strangely, I am waiting to feel sick. The masochist in me wants my side effects, which indicate to me that there is a lot of toxic, cancer killing medicine doing its work inside me. Don't get me wrong. I am grateful for the giant infusion of anti-nausea drugs that give me two or three days of respite. The nausea has not been a huge issue though, as when that stuff wears off, there are several choice bottles of pills sitting in my bathroom to take the edge off.
I did pretty well with the side effects last time. Dr. Raish says that indicates the pattern for the duration. Fatigue, and brain fog will be cumulative and will increase as the treatments progress, but in other ways what I have experienced should remain fairly consistent.
I make a tiny set of goals every day, which makes it sound like a vacation when I map it out, but by the end of it I am exhausted. Yesterday's included a run, some yoga, making oatcakes (Jon's go-to breakfast grab), getting a shot of Neulasta (keeps the white cells high enough, also causes muscle and body aches), getting groceries, walking the dog. I completed the list and was toast.
Today's list: swimming is at the top of the list, walk the dog... Speaking of my dog, I need to admit in public (this being public) what a gift she has been. I honestly don't know what I would be doing hanging around here so much on my own without her. She is excellent company. She takes her role as my constant companion extremely seriously, even though I believe the first year and a half of her life included little to no puppy interaction and lessons about such things. I am assuming this and I don't know it.
I know she would have been hard to resist, but I also know that when I got her at the pound she was quite longterm hungry, covered with bloody mats and random animal bites, had clearly been a poodle/bichon mix living probably exclusively outside. She adores us, even Tim, who is not overly interested in any animals. Her challenge, as many of you know, is welcoming people into the house. Her poodleness combined maybe with her past circumstances has made her extremely protective. Tall men in ball caps don't get a warm greeting, and almost no one gets in without a fairly high maintenance dance including Milk Bone biscuits and patience. That said, she has made first the year after I sold the shop and now this new and bizarre year much, much better.
I did pretty well with the side effects last time. Dr. Raish says that indicates the pattern for the duration. Fatigue, and brain fog will be cumulative and will increase as the treatments progress, but in other ways what I have experienced should remain fairly consistent.
I make a tiny set of goals every day, which makes it sound like a vacation when I map it out, but by the end of it I am exhausted. Yesterday's included a run, some yoga, making oatcakes (Jon's go-to breakfast grab), getting a shot of Neulasta (keeps the white cells high enough, also causes muscle and body aches), getting groceries, walking the dog. I completed the list and was toast.
Today's list: swimming is at the top of the list, walk the dog... Speaking of my dog, I need to admit in public (this being public) what a gift she has been. I honestly don't know what I would be doing hanging around here so much on my own without her. She is excellent company. She takes her role as my constant companion extremely seriously, even though I believe the first year and a half of her life included little to no puppy interaction and lessons about such things. I am assuming this and I don't know it.
I know she would have been hard to resist, but I also know that when I got her at the pound she was quite longterm hungry, covered with bloody mats and random animal bites, had clearly been a poodle/bichon mix living probably exclusively outside. She adores us, even Tim, who is not overly interested in any animals. Her challenge, as many of you know, is welcoming people into the house. Her poodleness combined maybe with her past circumstances has made her extremely protective. Tall men in ball caps don't get a warm greeting, and almost no one gets in without a fairly high maintenance dance including Milk Bone biscuits and patience. That said, she has made first the year after I sold the shop and now this new and bizarre year much, much better.
Wednesday, October 3, 2012
Here I sit...
Well, I wrote most of a post and it disappeared. Curses to the ipad keyboard. This will be shorter and I will figure it out later. It is pretty crowded in the little chemo lounge, though I will mention I am the only one sitting here with my buzzed, close to bald head exposed to the fresh air.
It is sunny out the big windows, I've got magazines thanks to Rachel (especially enjoyed Celebs and their Dogs). I've got my phone and my ipad, snacks and a trashy NYC based mystery. All pretty well.
The good news is that Dr. Raish measured my big tumor, which is, for better or worse very palpable from the outside. Three weeks ago it was 6 cm in diameter and today 3 cm. He mentioned that when you think volumetrically (which he does) the news is even better. The lymph nodes feel quite a bit smaller and less defined, vague... which is good. He also said the tumor feels softer, vaguer and less defined, all to the good.
I am going to get a chest port either Friday or in two Fridays, which will administer the poisons through the larger vena cava rather than potentially destroying the smaller veins through which it is flowing as I type.
While Jon was sitting here he showed me a rejection email from the Bruce Springsteen people. Unbeknownst to me he wrote and asked couldn't I come back stage, as I have CANCER. While I would have been mortified, it was kind of a sweet try. Jon has the curious and interesting trait of basically never ever being embarassed about anything. Some of you are nodding your heads right now.
He also took me to Portland yesterday to visit the clinic's wig closet, oh joy. I snagged a wig which wearing for more than 23 seconds caused me to want to open a vein. I did snag a nice soft big bandana and a sort of cute hat, and bought one more scarf at a vintage place on 23rd. I think I am either the bandana type or the commando type, which I need to practice doing gradually in more challenging places than the inside of my house or the chemo room. It is just sooooo much more comfortable.
That is about the whole report today. If I haven't mentioned our food brigade in a few days, this crowd bears mentioning every hour of every day. It blows us away every single time.
It is sunny out the big windows, I've got magazines thanks to Rachel (especially enjoyed Celebs and their Dogs). I've got my phone and my ipad, snacks and a trashy NYC based mystery. All pretty well.
The good news is that Dr. Raish measured my big tumor, which is, for better or worse very palpable from the outside. Three weeks ago it was 6 cm in diameter and today 3 cm. He mentioned that when you think volumetrically (which he does) the news is even better. The lymph nodes feel quite a bit smaller and less defined, vague... which is good. He also said the tumor feels softer, vaguer and less defined, all to the good.
I am going to get a chest port either Friday or in two Fridays, which will administer the poisons through the larger vena cava rather than potentially destroying the smaller veins through which it is flowing as I type.
While Jon was sitting here he showed me a rejection email from the Bruce Springsteen people. Unbeknownst to me he wrote and asked couldn't I come back stage, as I have CANCER. While I would have been mortified, it was kind of a sweet try. Jon has the curious and interesting trait of basically never ever being embarassed about anything. Some of you are nodding your heads right now.
He also took me to Portland yesterday to visit the clinic's wig closet, oh joy. I snagged a wig which wearing for more than 23 seconds caused me to want to open a vein. I did snag a nice soft big bandana and a sort of cute hat, and bought one more scarf at a vintage place on 23rd. I think I am either the bandana type or the commando type, which I need to practice doing gradually in more challenging places than the inside of my house or the chemo room. It is just sooooo much more comfortable.
That is about the whole report today. If I haven't mentioned our food brigade in a few days, this crowd bears mentioning every hour of every day. It blows us away every single time.
Monday, October 1, 2012
Fed up
Well, I got fed up this morning. Not to belabor the hair thing, but when I woke up it all felt as though it was just hanging off me. I went to the pool and as soon as I put my cap on I knew my hair might all come off when I pulled it off. I did not want to deal with this in the locker room. As nice as all the ladies in there generally are, I still wanted to deal with it in private.
I managed to get the cap off without too much drama after swimming, but didn't dare shower there. Basically I came home, gathered up a bunch of gear, went into the back yard, and scissored off what I could, following that with a complete self inflicted very short buzz with the clippers. Surprisingly, as soon as I did it my head felt eons better. It had been itching and tingling for days, and I was stressed every time I touched it and clumps of hair came out in my hands.
As fine as it felt, I knew it would be an illusion until I can get used to appearing anywhere in public. So... I threw on a hat and went to the grocery store. I wish I could say I was completely unaffected and without paranoia, but that would be a fat lie. I hated every second of it, even ignored a couple of aquaintances. As I've said here before and I'm sure I will say again... Oh fucking well. My head does feel really, really good though.
Jon and I have a date tomorrow to go to Portland and peruse the free wig room at our clinic. Maybe I will find something and maybe not. I am looking forward to getting my chemo on Wednesday.
I managed to get the cap off without too much drama after swimming, but didn't dare shower there. Basically I came home, gathered up a bunch of gear, went into the back yard, and scissored off what I could, following that with a complete self inflicted very short buzz with the clippers. Surprisingly, as soon as I did it my head felt eons better. It had been itching and tingling for days, and I was stressed every time I touched it and clumps of hair came out in my hands.
As fine as it felt, I knew it would be an illusion until I can get used to appearing anywhere in public. So... I threw on a hat and went to the grocery store. I wish I could say I was completely unaffected and without paranoia, but that would be a fat lie. I hated every second of it, even ignored a couple of aquaintances. As I've said here before and I'm sure I will say again... Oh fucking well. My head does feel really, really good though.
Jon and I have a date tomorrow to go to Portland and peruse the free wig room at our clinic. Maybe I will find something and maybe not. I am looking forward to getting my chemo on Wednesday.
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