I was debating which movie to refer to in my blog title today. I thought that Love and Other Drugs might be appropriate, except for the love part, and the part where I don't really want to relate to a movie about a young woman who knows she might soon die from Parkinson's and a guy who works for some evil pharm company. Tangled is good as well, and as of today, I've actually seen the movie. I did really like it, as did Lenny (though it's scary for a four year old in some parts), but I did have some issues.
My Disney princess issues go back a long time. I don't care if Lenny likes the princess stuff, because she doesn't actually know much about the stories. The stories themselves disturb me. (I like the songs though.) In college, a friend and I did a research paper on sexism in Disney movies. I'm not talking about girls being princesses, getting saved by Prince Charming, getting married, evil stepmothers, and all that boring stuff. I mean the violence and abuse: Ariel's legs getting ripped apart, Belle being imprisoned and starved by her "love," Sleeping Beauty and Snow White, you know--dying.
So this one was a big improvement over those, though the imprisonment was there and for some reason Rapunzel loves a criminal. But whatever. She doesn't seem interested in getting married, she kicks some butt, and she is a total Renaissance woman who can do everything, even if only BECAUSE she has been imprisoned. The issue I had this time was with the hair.
Long magical hair! Or is it? Long beautiful hair keeping her down! Or not? Blonde hair is beautiful, brown is ugly! Or the other way around? I didn't really get the message, except maybe, you shouldn't love someone for her hair. That's the message I wanted to make out of it though. Right before the movie Lenny and I went shopping and at least five different women stopped her--a 4 year old--to tell her how beautiful her hair was. I can't say I was jealous, because it wasn't jealousy, but it was recognition that I heard that for over 30 years and I don't hear it anymore, and I don't know if I ever will, since I think my hair is brown now. I like brown hair, don't get me wrong. I just have no concept of having it myself, or how that could be me. What is it like to shop without some kind of hair comment? Beautiful red hair! Sexy bald head! That's what I've been used to my entire life. Well, I'm finding out. Strange, ugly duckling hair--no comments there. Gabe thinks it's red. I think it doesn't matter, until I go back out into the world and realize that to everyone else, it does. We make movies about it, after all.
This is a long pontification on a simple movie, but it's better than the two other things I have to blog about. Hot flashes, for one. Apparently it's considered a serious problem if you have more than four hot flashes a day in menopause. Excuse me? I wouldn't even CARE if that was the case. How about six an hour at night? How about an hour of sleep every night for the last four? I have been so desperate I would have tried anything. I went back to the anti-depressant they gave me when I was on chemo which is supposed to reduce hot flashes by 60% or something if you use it for a month. Well, I can't use it for even a day. All night long, in addition to my hot flashes, my heart was racing and I was starving. I also felt nauseous, and I have all day today as well. I don't know if it's the drug or radiation. I sure as hell shouldn't have been hungry, because we ate a huge meal of leftovers from Thanksgiving, including pumpkin pie. But the hunger and heart racing just kept me awake, which is not the result I wanted.
So there's really nothing for me. All the doctors just tell me to wait, that my body will start to repair itself due to my age. It might take six months, a year. Are these people fucking kidding me? Very few women have such severe hot flashes, but it does happen. My mom has had them for 12 years. I've talked to other women who have them, including women who sincerely believe in alternative treatments. When they're this bad, nothing works but the hormones. NOTHING. And honestly, what do these women say about that?
I don't care if they kill me, I don't care if they give me cancer, it's better than dealing with hot flashes.
This might sound crazy, but that's because most people reading this have never had one hot flash. If you've had one, imagine having them every five or ten minutes. Imagine being fatigued from cancer treatment in addition to insomnia. Imagine how cold you get when you're bald after your whole body sweats and then is reminded that it's winter in Chicago. Imagine a one year old who doesn't know how to talk but can a strange version of "hot flash," since we had to find a way to tell the kids why I was turning bright red and looking like I would explode.
Love and other drugs my ass. I've done acupuncture, and I'm still doing it. I'm doing this damn icool anyway. I can't take the Effexor, I won't take neurontin (I had enough of the liver-killing anti-convulsants, thanks), I will never be allowed to take the hormones, and I am supposed to just wait.
If I was working right now, I don't know what I'd do. Yesterday I almost got in an accident on the way to radiation since I was so out of it. I put my gown on backwards. I stared at my pilates instructor as she told me how to position my legs as if she was crazy, though I'd done it several times before, because I could not register what she was telling me. She asked what was up. 45 minutes of sleep, I said. Girl, she said, they are putting you through the ringer.
I've done this before--I've had pregnancy insomnia, I've had newborns, I've had mono and chemo insomnia and everything. Those things ended, and that's what keeps you going through it. This might not end. It's depressing, and I still feel old, and frustrated, and when the flashes are terrible I wish I'd never done chemo and killed my perfectly good ovaries.
So there's the hot flash rant. I know I'm only six weeks out of chemo but I feel like I'm just doomed to the permanent menopause, as is has come on with such a vengeance. I don't care if you think it's sexist, but if men had these, there would be a solution that didn't risk your life. Or, everyone would be allowed to retire upon menopause. It's just the truth.
My other rant is a general triple negative one. Because of the menopause, I've been feeling angry about my dumb luck to be triple negative and have this aggressive disease that necessitated chemo. I'm stage one! No matter, kill the ovaries anyway, lose your hair, receive a poorer prognosis, be left out on your own to see if you live. And why?
Birth control pills.
I've always suspected it, and at least some real research supports my claim:
I was on the pill for 11 years, starting at 18 and stopping when we started trying to conceive Lenny when I was 29. The pill was great for me in some ways, as I had long periods that were heavy and irregular, and the pill changed all of that for me. Suddenly I had five day cycles every 28 days with no cramps, not to mention no pregnancy scares. For a teenager living 400 miles away from home that was a huge relief.
But on the other hand, I wasn't the best candidate for the pill. I always felt like I was one of the real AIDS generation, growing up with Ryan White and safe sex messages galore. AIDS was to me what cancer must be to others. So for probably half the time I was on the pill, I didn't use it for birth control purposes. It was backup, sure, but I always used condoms. A pregnancy isn't the end of the world after all, but any kind of STD just wasn't worth the price to me. And I didn't sleep with very many people, but I did have some boyfriends, and they knew I was on the pill, and never questioned the condom thing. Except one guy, who had been trying to get me to date him forever, and then he tried to get me to sleep with him forever, and then we were finally in bed and he started arguing with me about using a condom. I wasn't even mad--I just didn't get it. Was he crazy or something? There were better ways we could spend time. The argument lasted a few minutes. It was my apartment, so I just put my bathrobe on and went in the other room and turned on Law and Order reruns. That whole stupid experience was perhaps worth it to see the look on his face as he came out of the bedroom, naked and excited, saying baby, what's wrong? Well, it looks like you had better go fuck someone else, I said. And he walked his sorry butt back to the el.
Personal story, I know (not as deep as the poem blog though, right?) but that's what pisses me off about the pill and triple negative breast cancer, if that's the truth. Why didn't anyone tell me? Well, back in 1994 when I went on it, I'm sure no one knew, but I still think that this article is right--it won't ever be out there. Can you imagine what would happen to our society if women were told the pill could cause breast cancer, especially for young women? The pill was touted as such a gender-equalizing thing, but in reality I think what it did more than anything is let a lot of guys off the hook. I know that's not the case for many guys, including those from my personal experience, but it is true for lots of men, I'm afraid. Now, I'm married to the guy who thinks nothing of the vasectomy and couldn't care less if we use condoms as long as we're having sex, so there was no reason for me to ever go on the pill again after age 29. And now I can't, because of cancer, and he might not go for the vacectomy since I'd like him to wait in case I don't make it, or in case my menopause is permanent, since that would make the surgery irrelevant.
Any way you look at it, the pill connection is a bunch of shit, though I don't regret my choice to be on it. I didn't know. Even after I answered about a dozen questions about the pill on my health questionairre right after diagnosis (compared to one each on things like alcohol consumption, activity level and weight--the only three "lifestyle" factors that have been directly linked to breast cancer), when I asked my doctor if there was a connection, they looked me in the eye and said, we don't know but we don't think so. Same with clomid, which I took once in order to conceive Augie. It worked on the first try, so I doubt that was it--plus, I'm fairly certain I already had breast cancer at that point.
Is the goddamn birth control pill going to kill me? Even if not, can I be a cheerleader for the condom industry? I remember back in the day when I was a young teenager who wasn't having sex and I would buy condoms for my friends if they were too embarrassed. If that girl grew up to have cancer because of the pill, bitter irony never had a better name.
I've never liked the idea that was need to inject, or swallow hormones in order to prevent pregnancy. When I first went on the pill I had this big long discussion with my boyfriend at the time. I have to do this every day, and it will change my body, and I can't forget to take it, and what will you do? Well, I would pay for it and pick it up from the store for you. I said, of course you will! Now I was a pretty willful 18 year old, and it never occurred to me that he wouldn't do something, since it takes two to tango, right? It never occurred to him either, and for years that's what he did, but I still felt this odd sense of the balance being out of whack at the beginning. I grew to appreciate the pill, as I said, but it took time.
Boy if I had known, the balance would have seemed plain stupid. People complain about condoms and I think, what are they talking about? It doesn't feel as good, but it still feels good--it's still sex! And please don't talk to me about spontaneity if you have children. It takes away the element of surprise! And what element is that, exactly?
How about this? Condoms are the only birth control that prevent STDS and potentially CANCER.
Now of course maybe there's no connection, maybe this isn't true at all, maybe I have cancer because of hormones in my milk or meat, because I live on the south side of Chicago around a bunch of old paint factories, or maybe I just wasn't meant to live a long life. Maybe it's someone's plan for me to always live with this tangible knowledge of my body, what it feels like to breathe or walk, or what it can mean to have something wrong--a hard line that doesn't feel right in the breast, a back pain that could be something else, trouble seeing that's really seizures, arthritis that reminds me of my hip fractures, cold air reminding me I used to have hair. I can't understand it, why the whole damn thing had to happen, but the potential connection with something as unnecessary as the pill makes me kind of angry, you know? Kind of on edge, kind of unbelieving at the pettiness of it all, kind of, well, tangled.
Tuesday, November 30, 2010
Thursday, November 25, 2010
I really didn't want to write a Thanksgiving blog. Often we say, there is so much to be thankful for this year. And that seems trite, or counter-intuitive, or something, for the year 2010 in the Jacob-Sterritt house. Of course I am thankful for my family, my friends, my body and my life. I will add that I am thankful for every person who reads this blog--the fact that anyone does is something that I still don't understand. But how do I interpret thanks through this cancer lens? It seems altogether too difficult. So instead I've decided to do something else.
Until I wrote this blog, I never wrote anything but poetry in order to remember my life. I don't see poetry as a high art form; writing a poem is similar to taking a photograph, calling someone on the phone to tell a story or writing in a diary. It is a way to remember, and what is memory? Memory is the mind's way of giving thanks for what has been seen, felt, or experienced.
These poems--none of them new, but I tried to find some that aren't too old--are a much better way of expressing what I'm thankful for than anything I'm capable of writing right now in my sleep-deprived, tryptophan-heavy, football-overdosed state. I didn't pick these because I think they're particularly good, and there are some I don't like all that much when I think about it, but together they say something, perhaps. Happy Thanksgiving.
One Month Old: A Birthday Wish for Lenny (2006)
Still air in the evening
Extreme weather arriving in torrents
The dust and clay of far away countries
A home you never want to leave
A childhood worth remembering
An old age worth the wait
Hearing the birds too early in the morning
Learning they’re birds, knowing it’s morning
Too many little things to keep close
Too much of the world you’ll never get to know
Having nothing to lose
Living through having nothing
A second language, a way to talk with your hands
Words you’ve forgotten how to spell
The first water of a parched August noon
The fire and smoke of December
Sun gleaming on wood through windows
The darkness of an empty street
An accident you emerge from intact
A lost moment you long to get back
The soft breath of a tiny impossible mouth at your breast
Letting go of unforgettable hands
Failure and love and grief
And remembering how it used to be
A hundred and one birthdays
A million moons
This is what I wish for you
Everything, and the time after
Lessons Learned from a Marriage: For Gabe on Father’s Day, 2007
California is dust, traffic and complacency.
Weather only shines in Chicago.
Being a man, or a woman, comes naturally
when you forget the details involved.
It is not necessary to learn fatherhood by example
if you know stars, lawns, Mozart and somersaults.
Parents can be two generations removed and share
none of your blood, but some of your songs.
It is possible to watch another person becoming
while the world falls away before your eyes.
We are always moving away from the sun, from each other.
The alternative is difficult to imagine.
The plot of the story is not the point.
The point is that I am telling it to you.
Commuter’s Lament (2008)
When I rode different trains
I wrote different poems.
Two straight lines turned into three
as I lied a little, to mix it up.
Late became world weary,
crazy ended up spiritual.
I’d make love and redemption
out of three tin cups.
I wouldn’t cover guns at my head,
hands up my dress or the friends I kept.
Words only flowed
from the ordinary
when the sharp rumble
where my feet should have been
caused the faithless to pray a little
made the ride home sweetly rougher
turned 6 pm into everything I’d want
to remember about the life I never had
over the wooden trestles
where the sparks burned blue
the screech lingered and
you had to go down to feel the real world.
First Poem for the Second Born (to Augie, 2009)
You laughed with your full body in sleep
before you were supposed to understand laughter.
Could it be
the curve of my chest
the light on the wall
a new voice
water on your face
a sudden breeze
your sister talking
the sight of your feet in the air
or knowing you’re separate?
Maybe the joke is on us.
Worried, unbelieving still,
farther from ourselves than ever.
You close your eyes and laugh,
unaware that a month’s worth of memories
you will never remember
will haunt our sleepless nights
with the vain desire to understand you,
or your joy in being new,
or the way things seem for the very first time,
or what it is to be,
or how things got so funny
in only thirty days.
Losing Weight (2009)
It’s a funny word, shed.
A small building that stores things,
a way to cast off for good
like the insides of bodies, our old selves.
These babies, they’re parasites.
Left with no room to breathe,
I only nibbled, yet grew.
Thirty pounds, nearly forty.
And now it’s five months later,
my son is here, still feeding off of me,
but more aware now
of the ways we love each other.
I am nothing if not his mother.
But somehow the pounds that were him
are shed, and ten more with them,
fractions more every day
and I stand each day in fascination
as these declining numbers
mark less of me.
My husband can pull my pants right off,
no zippers, and I lament those size 4s I gave away
when I assumed older meant more.
Running hands over my belly is weird,
to think what was stored here,
what I gained and cast off twice
to make two people now apart from me.
What’s left is equally strange.
Memories of twenty three,
some other man’s hands, or mouth,
feeling light, not feeling fabric on my skin.
These stretch marks are just reminders
and there are always reminders.
What I have shed I don’t want back,
but I wonder where it’s gone.
There is a world where news is made, where history occurred.
Kenyan hospitals imprison impoverished mothers.
We scrape leftover food from colorful plates.
1940s Leningrad saw cannibals hiding in the streets.
I braid our daughter’s hair.
Fifteen people were shot in this city last night.
Leaves fall softly onto our shoes.
Grief overtakes our friends, neighbors, the woman in the park.
Our newborn son has eyes that change color in the light.
Authors debate evil: Hiroshima or prison camps? Knowing or not knowing?
We make love every night.
We read in search of understanding.
Why were we given this life, and when will it be taken away?
There are too many days, or too few, depending on the circumstances.
Monday, November 22, 2010
It seems like such a long time, and such a short time too. 200 days is way too long to have focused so much on cancer, and yet in terms of other things, such as the way the kids are growing up, it really does still fly by no matter what else you're doing. I should be officially done with the active part of my cancer treatment at Day 218. I will be doing the follow-ups for years, and I will still very much be a cancer patient, as I am now. Yesterday I was panicking because the pain in my spine is back. No matter that it went away for a month, that it's not there right now, that my son weighs 26 pounds and I pick him up a lot more or that I've been doing a new exercise routine. I'm in the new club now. Back pain? Bone cancer! That part is really hard. I'm just trying to ignore it now, assuming that I'm overreacting.
But I'm not really. Cancer crops up years later, where you least expect it, right when you think it's all behind you. I'm not going to focus on that now, because I am much more pissed off about the effects of chemo than of cancer itself today. Let me just shout out that I HATE menopause. I hate everything about it and how unfair it is that I have it at age 35. My hot flashes are a little better but still ridiculous. I'm figuring out how to deal with the changes in my sex life and libido, and even though I know I have a healthier sex life than many healthy people, no matter what anyone says I really HATE that part too. And boy do I hate my hair and my lack of eyebrows. I tried to figure out how to draw on eyebrows yesterday, because while my hair is coming in, my eyebrows seem to be thinning more if anything. I don't know if you can see it in this picture--do the eyebrows look bizarre? I've been bald for more than five months and I'm just now trying out the eyebrow makeup and I have no idea what I'm doing. I feel like I looked a hundred times better when I was bald as a cueball, with eyebrows. My hair is much longer than when I buzzed it off, but it's so fine and soft that it just sticks straight up and is not even thinking about lying flat on my head. Ugh.
I think my chemo-hating mood is exacerbated by the fact that I'm just starting to feel some radiation fatigue. I was told it would hit me right at day 20, and I had my 21st treatment today--2/3 done! This morning I'm just feeling exhausted, even though I did get some sleep. Don't get me wrong, I'm still planning on walking about three miles to my pilates session, but it might take me a minute. It also might storm, which would ruin my plan. It's been in the 60s here, warm enough to wear a skirt and short sleeves, as you see in the picture here. The temperature is supposed to drop 30 degrees today though. Ah, Chicago.
Anyway, my skin is doing remarkably well according to all the doctors and nurses, but it was irritated enough under my breast that I stopped wearing a bra a few days ago. I don't really need one anymore anyway, since I've lost weight even there, so I'll give my chest a break I guess. Aquaphor is still working for me, so I've just invested in a lot of camisoles and tank tops that will get thrown away when this is all said and done. No one tells you about these types of issues when you start treatment. Hopefully no one who reads this will ever need this information, but if you do, remember this: The cream will ruin your clothes, for good. Don't find out the hard way, as I did.
I keep hoping that with all the press around breast cancer, that things will get better or that there will be less mystery around the process of cancer. And yet I don't see any evidence of that. My acupuncturist, who had breast cancer 10 years ago, was talking about how she chastised her doctor when she had her lumpectomy because the whole process--the wire, the marking, the procedures you have before the surgery that they don't tell you about, how they leave you sitting in a wheelchair by yourself in the basement crying before they get you for surgery--was so terrible. I sent her a link to my lumpectomy blog as our experiences sounded so similar. I was glad to not be the only person to be pissed off about the whole thing, but also really sad. In ten years, nothing has changed, and no one seems to be listening.
Many people with other types of cancer might be pretty annoyed with what I'm saying. Breast cancer makes all the headlines, gets all the walks and the hope and all. Other cancers are often ignored or pushed to the side. But the hype doesn't seem to have changed much about the experience of having breast cancer itself, down to the stubborn refusal of the medical community to change its practices. Why will I be getting mammograms several times a year for the next several years when it has been proven that mammography is ineffective for young women, especially for women under 45? Why not ultrasound? When I think back to my initial denial--my one day of denial--on May 3 when I was in for the ultrasound that was supposed to show my clogged milk duct and instead showed two perfectly detectable round masses, and a third one in shadow--it was as clear as day. I didn't know it then, even though they were talking over my head about it, but my cancer was glaring in its obviousness: See this one here, at 2:30? And this one at 3? (They look at the breast like a clock, and your tumors get names for the time, but they don't tell you they're tumors right then. I wonder what they compare testicles to?) The mammogram that followed was almost pointless. I can still see that ultrasound picture as if it just happened five minutes ago, though at that time I had no idea what it would mean for me, for my life, for this 200 days.
I'm tired of writing now and need to get to pilates, so I'll end by saying that I hope that I will be able to look back on this 200 days someday. I don't mean to say that I hope I look back on it and laugh, or that I look back and realize that my life changed for the better or I felt the love or anything. I just want to be able to look back, to still be here to do that. That would be enough.
Wednesday, November 17, 2010
Today marked my 17th day of radiation, so I am officially more than halfway done with this last part of my treatment. I just started to notice a little bit of pink on my skin; next week they might up me to the prescription cream. But apparently many people already have a skin reaction at this point, so I am holding up very well. The technician today told me that being thin helps guard against skin reactions from radiation. I have no idea why this would be true, but it would be the only time in cancer treatment so far that being thin was a positive rather than a negative for me, so I'm willing to take her word for it.
As I think about nearing the end of cancer treatment, I wonder what that really means. I will definitely be very emotional, happy, and in a celebratory mood come December 10 when I can mark the end of what will be over 7 months of continuous treatment, from surgery to chemo to radiation, with very little break in between. And yet, I won't actually be "done" at all. I will go to see my surgeon and my oncologist on January 4, and at the end of February I will have my first of many post-treatment mammograms. For the next two and a half years, I will have a high risk of recurrence/metastisis. For two years after that, they will continue to monitor me very closely. For the next several years, I will go to my specialists every three months, hold my breath, lose sleep, and generally go crazy wondering if this aggressive cancer will come back. I've heard stories of women who just finished chemo and found out that their cancer was back. Others have recurrences 10 years later, though that's rare with triple negatives. Our big hurdle is getting through the first three, during which time every backache seems like bone cancer, every headache is a brain tumor. And those are more positive than cancer spreading to your liver, which basically just kills you right there.
I feel like I'm doing pretty well with acting like a normal person, considering that this is the future I'm looking towards. I hope it gets easier, rather than harder, when treatment ends, but I wonder. So many people talk about how impressive it is to have gotten through chemo. But I ask you, how many people have you heard that die from chemo? I'm sure 99.5% of people live through it. It's horrible, but it usually doesn't kill you, at least not right away. The heart problems, the unknown effects of the poison, those probably take years to show up. Living through chemo means nothing for your overall ability to survive cancer. I'm hoping against hope that it will help me because chemo is the only thing I could have done to fight triple negative breast cancer, but if it were to come back or spread, what a piece of shit that will be for putting me through all of this for the last five months.
All of this! This damn menopause, for instance. When I tell people I'm in menopause or having hot flashes, they assume that I mean that chemo causes hot flashes. No, that's not true. Some drugs cause hot flashes. This chemo regimen kills your ovaries. Hot flashes are just a potential side effect of that death. There are lots of others, including changes in your sex life, your moods, your bones. But none of those should overshadow the killing of a healthy body part.
Same with this hair. Boy do I hate it right now. I much preferred being bald, especially when I had eyebrows. Now I think I just look like a pathetic old man or something. When will I ever look normal again? I miss being a normal-looking, even dare I say, a pretty woman. I'm sick of this, but I just can't wear the wigs. I barely remember how, and even though I hate this current look, I at least feel more like myself. We put so much focus on how being bald looks that I think we often forget what's really going on--again, that chemo killed my hair, down to the follicle, because it's such heavy poison.
I feel that there is a lot of forgetting when it comes to breast cancer, or at least that there's a lot of misrepresentation. With all of the focus on hope and positivity, it's easy to think that this is some kind of easy disease. We talk about mammograms as if they are preventative, rather than detection screens. The death rate hasn't changed for breast cancer for 10 years. The chemo regimen hasn't changed much in 20. We don't know what triple negative breast cancer is or what causes it, though I have my own theories, ranging from testosterone levels to hormone changes brought on by pregnancy and nursing to environmental factors such as diesel fumes. And yet all of the hype around breast cancer leads people to believe that all this progress is being made, that you will be just fine, as long as you're positive enough in your attitude.
Tell that to the women who die from this disease no matter what they do. Tell that to me, when I'm at the beginning of this "journey," when I've suffered, been disfigured, made my kids worry and my husband cry. Tell that to the family of anyone who goes through this. I don't want to focus on hope, which doesn't really mean anything, or on exciting new poisonous treatments. I want some progress to be made on prevention. How many people's lives will be cut short in their thirties or forties while everyone else was wearing pink? How many breast cancer survivors' daughters will have to start having mammograms at age 24, like Lenny will, if we don't find something better? How many people will lose their sense of self while the world at large tells us we're heroes?
I think that the real issue here is larger than breast cancer--much larger. It's all wrapped up in the idea that we have in the U.S. that we are a meritocracy. If you are successful, it's because you deserve it, and if you are poor, or uneducated, or sick, it's your fault. When people first learn I have breast cancer, they inevitably ask one of two things: Is that in your family? Do you have any risk factors? "Risk factors" is code for, what did you do? And if it's in your family, then you're just naturally doomed and that doesn't affect anyone else. No one seems to think that shit just happens and it's not fair. We don't consider that our society has a lot of artificial environmental stuff in it that none of us can directly control. Finally, we just can't wrap our minds around the idea that positive people die from cancer, and shitty cranky people live. Old people can live for years after a diagnosis, folks in their twenties only months. Whatever we do or don't do is not the point and is not what causes cancer.
Ir's hard to believe that, though, if we're addicted to the idea that we can control our own fates and that we deserve what we get. I think often about an old colleague of mine, a man who worked for social justice causes all his life. I kind of had a crush on this guy in the way you admire someone 20 years older than you. He was handsome, and bright, and extremely friendly and committed to the causes he had chosen. He was very serious, in excellent physical condition, very healthy, and never even swore. You could try to talk to him about sports and he would turn the conversation to civil rights and it didn't even seem annoying.
And one day he found out he had a brain tumor and he was soon gone, just like that.
The way you live your life doesn't always affect what happens to you, and that sucks. I guess it can help; I've come through cancer treatment fairly well so far in part because I'm in good shape and I'm very active and take care of myself. But it still knocked me on my ass and might affect me permanently with menopause, potential lymphedema, heart conditions. No amount of taking care of myself could prevent those things. I don't think I deserved it.
Don't think I'm feeling sorry for myself, now. I'm just reiterating my old theme: Let's stop talking about what a privilege it is to go through this, how strong people are, how brave. That's some U.S. talk right there. In other places I bet they say "cancer! wow, that's terrible, sorry." And even here, it's a gendered response. Do we ever tell a man with testicular cancer, hey I know you only have it in the one but let's take both of them just because, and if you don't like it, you're being vain? Do we tell men who become impotent from chemo, well, I'm sure you didn't have much time for sex anyway? At one point I was complaining about menopause to my gyne, and he started to say, well I'm sure your husband underst...and I interrupted him. What part of menopause is about my husband? I'm talking about ME.
No one wants to go through cancer, and once you are in a place where you have to, no one wants to think it will kill them. I can say that I worry about death without really believing that could happen to me. My daily life seems so far removed from that possibility. It involves things like my 4 1/2 year old daughter making a book at school--bound with cardstock and all. She wrote and illustrated the whole thing and there's even a page that says "I dedikait this book to my mom and dad." When she talks to her brother she says things like "I wasn't suggesting that you do that, Augie." Instead of me reading her one of the books I got her about kids with moms with cancer, she reads it to me. When we get to the part about feelings (this is a book for much older kids, but oh well), I asked her how she feels about my cancer. "Happy, because you're almost done." My life with her is often a marvel, because I wonder where the hell she came from and how she got like that.
Same with my son, but for different reasons. I think he has been reincarnated from a circus performer mixed with a rabid monkey or something. He has learned to climb onto the table in the dining room, he scales himself up to his high chair, will only eat if you give him a fork and let him feed himself, and will almost never let you hold him because he is physically incapable of sitting still. He's no dummy by any stretch and he knows everything that's going on, but he rarely has the attention span to sit quietly with a book. This picture is some of the only evidence we have of anything like that. Five minutes later he learned how to stand on the desk.
So my life is filled with that sort of thing. If I don't look in the mirror and if I'm not having a hot flash, I could almost forget about having cancer. Well, not really, but I sure as hell don't feel like I'm dying. So hopefully I'm not, but I know that other people felt the same as I do, and didn't last a year. Just like I know that other people were sure they would walk again after losing the ability, and then they never did. Just like lots of kids were convinced their anti-convulsants would work, and they got brain damage from all the seizures anyway. Did I deserve those positive outcomes from those bad situations? I sure as hell did. But so did a lot of other people for whom life turned out differently.
This is all just a long way of saying I'm almost done but even so I won't really be done. I've been feeling very introspective recently, so sorry if this blog is too deep. Maybe it's a good distraction from this God-awful chicken little hair. How can something that feels so soft look so ridiculous? Is there a normal looking lady in there somewhere? If not, my appearance has finally matched my personality...not much normal going on there, I suppose.
Saturday, November 13, 2010
It's been almost 200 days; I guess it's fair to say I'm still plugging along. I've finished 14 radiation treatments, and my skin looks no different than before, at least not to me. I know it's early, but the nurses seem to think it won't be too bad for me if I keep following the instructions. All that means is that I need to slather myself with aquaphor two or three times a day, all over the left side of my chest. This is obviously not a difficult thing to do, but let me tell you, I have already ruined a lot of clothes. That stuff is a nightmare of goopiness, and it doesn't come off in the wash. On the other hand, I didn't even have to buy any at the store--we have several containers at home, since that's what we've always used for the kids' diaper rashes.
I can't decide if cancer treatment is meant to infantilize you or make you feel old. Right now, it's a strange mixture of both for me. Diaper cream, baby chick head, loss of most of my other hair. Menopause, exhaustion. Some people treat me like I'm a fragile little thing, others like I'm two steps from death's door. Luckily, I've found that many people are capable of treating me normally, even if it becomes obvious that it takes some effort for them to do so.
I've been trying to go out in the world a bit more, since I spend so much time by myself at home. I thought I would be bored at home, since the only time I've ever had off of work since the age of 12 or so was during my two maternity leaves. It's impossible to be bored with a newborn in my opinion, especially when you're nursing. You turn around and the day is over, and you haven't even changed out of your pjs. Since I'm still sending the kids to daycare most days, I thought I would have all this time. What the hell happened? I cook all the time now, do laundry, run errands, and generally act more like a regular housewife than a cancer patient. I have been prioritizing some me stuff--I've started doing a pilates class once a week and will be doing personal pilates training with a friend once a week as well. I lift weights at home, and I still take my walks--we've had an extraordinary fall here, 70 degrees this week, and I've made sure to spend some time outside. These pictures are from Thursday, when we went to Lincoln Park zoo on a ridiculously gorgeous Veteran's day.
But where do the days go? They've been much more efficient at radiation, so I don't even have time to read the paper there. In fact, I figured out that the woman before me is always late, so I get there extra early, before her, and they take me back right away. She sees me on the way out sometimes and asks me incredulously if I'm already finished. How is it possible to be late to something every single day? I don't get it. This cancer treatment, it's your job. You have control over nothing so you might as well show up and get it done.
So I've been reading cookbooks for the most part and I've been fattening up a bit as a result. Gabe is probably happy about this, but not me. I'm a little obsessed with staying in the best shape that I can, since I'm convinced that I would be much closer to death's door if I'd weighed a little more and never found that cancer. But it's still hard to resist my own brownies, or my breaded tilapia or homemade meatballs or any of the other things I didn't have the energy to make or the desire to eat for so many months. Since I have failed to do so personally--and I will, I promise--I did want to take this opportunity to sincerely thank everyone who cooked for us during my four months of chemo. That was such a huge help, especially during the three months when I was working. I don't really know the best way to thank people, since I hope I will never have to pay anyone back in the same way. So until I figure out something better, just know that we greatly appreciated your generosity. Gabe still gets choked up every time we talk about it.
In addition to eating and exercising, I've been taking advantage of this spa Wednesday that the local hospital offers to cancer patients. It's called Faye's Light, and is funded by a special grant. It's really a cool program. I have received a few free massages, a free manicure, and I tried reiki for the first time for free. That wasn't for me, but the massages have been great. I have a few pedicures scheduled as well as a few more manicures and massages. Apparently the woman who started this foundation remembered how much her mother appreciated her doing her nails when she was in cancer treatment. Most of the time, when you have cancer, you are experiencing what we tell our kids is "bad touch." People poking and prodding you, sticking needles in you, poisoning you. What's especially sad is that for a lot of people, that's the only touch they get. I see some of these people at radiation. They are old, and they chat up the nurses because I think they have no one else to talk to, no other human contact. At the spa, I've never seen a man waiting for a treatment. I think that's really too bad--free massage is good for everyone, especially people who have gone through all the crap we have!
So I can add that to the list of things to be grateful for, even though I don't feel any pressure to develop such a list. I have had a lot of affection and love for someone going through cancer. Unfortunately, a cancer diagnosis can take that from you. But I am in a loving marriage and my kids still like me, even though Augie is often more likely to whack me than hug me, because he is just crazy. And I have recovered fairly well from chemo, except for these hot flashes which are driving me to distraction. I need to find something that works on them--acupuncture does nothing, and there's not a whole hell of a lot I can take. It is a really miserable situation and yet--it's the only thing I can see as lasting from chemo, outside of my strange looking hair. And don't get me wrong, it's a big thing, this killing of my ovaries. They didn't deserve to die, you know? What the hell did they do to anyone? But if I didn't have terrible hot flashes, I think I could deal with menopause, though it does make me sad.
I don't get sad that often, but sometimes things hit me. Yesterday I was thinking about this couple whose wedding we attended years ago. They came to our wedding as well; we were friends, and I worked with the woman. She had a teenage daughter who was her whole world. Now she is gone, and so is her husband. He was young and healthy and died relatively quickly from stomach cancer. She died very unexpectedly a short time later, of natural causes, though I think she was maybe 37 at the time and there was nothing obviously wrong with her at all. I think her daughter is in college now, and I know she would be so proud. I was crying quite a bit thinking about this yesterday. Crying to think that neither of them is here anymore, crying because her daughter had so much loss, crying to think about how much has changed in just six short years, for how much in life is unforeseen, but also crying for selfish reasons, because I know she would have wanted to see her daughter graduate high school and I really want that too. Crying also because it made me angry to think about all the folks who talk about being positive, having faith, fighting. They both had all of that. Cancer just took him so quickly, and made him suffer so much; it also was so so hard on her. No young person could ever see that coming.
I wonder sometimes if that's what's in store for me, that suffering and death, but I also wonder what kind of justice it is if it's not. What makes me different? Why do some people get lucky? There's just no good answer. I hope that when this treatment is over, it's really over. I hope I can be like Gabe one day and say that I "had cancer." But these next three years will be harrowing. It's not until then that I can stop holding my breath, being a triple negative, with a high chance of recurrence or God forbid metastisis in those years. Can I just speed up time and get to that magical three year point? If I could, I guess I wouldn't, because I would miss out on a lot with my kids.
The other day I met another cancer survivor, right after pilates class. She asked me if I was going through cancer treatment. It's so interesting that only other people who have gone through it will just straight up ask you when they see the evidence on your head. We got into a long conversation. She was diagnosed at 40, 6 years ago, so I told her she should be good. Triple negative, BRCA positive, double mastectomy and ovaries removed. At one point she said, I have had everything taken from me that made me who I thought I was, and now I feel like I really know who I am. She said that at the same time, cancer has made her insecure, and she hates that, though it's good to be here to admit to it. I wondered if insecure is the right word. You can't be too insecure if you're out in public talking about your breast implants and how you think they look fake. You can't be too insecure if you point to another bald woman's head and say, yeah, I only wore my wig once. You aren't too insecure if you give this total stranger your number and tell her to call you. Haunted, maybe, still waiting for the other shoe to drop, but not insecure.
So I think I will call her. This is the second time in my adult life that a woman, a total stranger, has given me her number. The other time was years ago on the El, when a woman I talked to on the morning commute gave me her number and told me to call her if I ever wanted to go shopping or go to lunch. Maybe six years later, when I was pregnant with Lenny, I stood up in that woman's wedding. Having cancer makes me wonder why this doesn't happen more often. Why do we have so many walls up, especially we women? What is there to lose? It's as if we only learned how to reach out to strangers if they are good looking men. And then we learn that doesn't work out too well, so we don't do it at all. I think this is going to be my new year's resolution. All those friendly people in the gym at work, at water aerobics, on the train? You'd better watch out. You might be hearing from me. In the meantime, if you already have my number, feel free to give me a call. I'm in more of a talking mood these days. To some extent, cancer encourages you to focus on what is really important and let the rest go, though it is hard to do that on a day to day basis. On that note, nice work, Northwestern!
Sunday, November 7, 2010
So I think I've either hit the point in my treatment where I don't want to think or write about it anymore or I am just too damn tired to sit down and write. On the off chance that it's the second thing, I am going to make myself do it at least once a week. Since I'm not working, and I spend a lot of time by myself, or talking to small kids, this is a good outlet to remind myself that I have a brain, and one that doesn't seem to have been marred by chemo, at least that I can tell.
Now my body--that's another story. Actually I think if I wasn't in this extreme menopause my recovery from chemo would be pretty remarkable, considering all the crap that happened and all the weird side effects I had. I feel almost like myself, except with a thousand hot flashes and no period since September 1. That's the crazy thing about this menopause. I had a normal period, regular cycle, and then BAM--less than two weeks later I was in full-blown menopause. What crap. Sometimes my arms fall asleep at night, and I wonder if that's some odd kind of neuroapthy, but it doesn't happen during the day so it doesn't affect my ability to do normal things. I also think that it's possible that that always happens, because I sleep on my sides, but I just wouldn't know because the rest of me is asleep too. But I wake up a few times an hour if I do fall asleep, so I feel these things.
Otherwise, it's all good, I guess. I have a little cold right now but other than that, I feel more like my old self, and I'm not quite three weeks out of chemo. My nails are fine, my memory's intact, I have no neuropathy that I can tell, and my weight is the same or a pound or two less than when I started. Many things that I worried about didn't happen, at least not long term things. Other side effects are harder to see--like the heart issue. The non-chemo issues are there too--I could still have lymphedema at any time. And of course, my cancer could come back. Talk about the elephant in the room. It's so much easier to focus on the little things, or the side effects, than on the Big C itself. It's so much easier to focus on something like hair, for example. So why not talk about that a bit?
My hair is starting to come in for real now, as you can see in these pictures. It still looks weird to me, and hell if I can tell if it's red, but I don't think I have any other genetic option except white. It looks and feels like a newborn's hair, or like a baby chick, as someone said today. Gabe is obsessed with it, and people seem to like to touch it. Virgin hair on a 35 year old mother of two--a novelty. For me, I would rather just be bald or have normal hair. I'm a little done with being a novelty, I've done that enough in the last 25 years. On the one hand, I care about being cancer girl. I don't like being seen that way. On the other, I don't care enough to change the way I'm doing things. Wearing a wig just seems so alien to me I don't know what I was thinking when I bought them. So when I'm out and about and people stare at me, it bugs me, but only for a second, and then I realize how much more it would bug to wear a wig and I just shrug it off. Someone told me this week that it took a lot of self-confidence to go around bald like I do. I said no, not at all. Just a lot of laziness. Too lazy to wear a wig, too lazy to care what people think. Every time people see some kind of strength in this cancer fight, I feel like they're just uncovering a character flaw masquerading as something else.
For example, I went to work for a day this week, and I wore a wig, since I didn't want to explain to people at this meeting what was going on. I only see these people twice a year so it didn't seem worth it. But boy did a few people who weren't at the meeting, such as people who see me mostly at the gym, do double takes when they saw me. Like wait--didn't I just see you a month ago and you were bald? Did your hair grow that fast? That was kind of funny. I'm glad I went in--it made me realize that it is a damn good thing I'm not working right now. Four hot flashes during a two hour meeting, while wearing a wig and a suit. I thought I would pass out. This might not go away anytime soon and I realize that, but at least I have a few months to not worry about it. At home, I can just strip down to a camisole, or sometimes if it's really bad, to nothing. I can't exactly do that at work. OK, I suppose I could since I have an office, but it doesn't seem advisable.
I also realized that my work is interesting, and that someday I'll look back and say, you know that insanity that happened starting in 2008? I worked at the Fed then, and boy was that something else. I was too distracted to think that way in the latter half of chemo, but after being away for a while and feeling better, I can see it now. So I gained a new appreciation for what I do, but it was still very strange to see people at work. A few folks just found out and I had no idea they didn't know.
One guy told me my hair was pretty and then paused and said he hadn't seen me in a while and that he hoped everything was ok. I realized he was trying to graciously ask what was up, that he knew that wasn't my hair. I was impressed that a guy would notice such a subtle thing, and I thought for a second about how to explain my situation in a way that would match his graciousness. But instead, I answered Katy-style. Thanks, but it's not my hair. I guess you might not know, but I'm doing treatment for breast cancer.
Was that the right way to handle it? I have no clue. Hiding it just seems like too much work. There was something in Parade this morning about a young couple getting married, and the guy has a rare and aggressive form of cancer and not long to live. When they met, it was at a bar and she asked him why he wasn't drinking (why do people do that? do you ask people at a steakhouse why they're eating fish? who cares?) and he said "I have cancer so I can't." Boo-yah, right? Nope, she didn't care, and chatted him up anyway.
That's something I haven't experienced. I can't imagine being able to meet new people now, except for those who have dealt with breast cancer or another form of cancer. People just seem too uncomfortable with the whole thing. I can't imagine dating while dealing with this, which is something that a lot of women my age would be doing. I'm still surprised that my husband is attracted to me and wants to go out on public dates with me, and he's kind of required to by contract, right? And I'm not just talking about being bald, or having scarred and marked up breasts, or having tattoos (can you see it in the picture? right above the V in my shirt. a blue dot. I have three of them. I asked them--why blue? Couldn't you get brown or black or something that could actually look normal on a human being? I look down at this and in less lucid moments I think...melanoma--look at those fuzzy edges and what's that weird color! give a girl with cancer a break.)
It's having cancer itself that makes it hard for people to relate to you, even if you look normal. You could be completely capable of having normal conversations and some people just would not know what to say to you. Then go a step further and think about someone wanting to sleep with you, fall in love with you, marry you? Now, I feel like a normal person, so those seem like logical things to me, but I know many people just couldn't go there. I remember when I was doing blind dating (some people might not know that's how Gabe and I met...a Salon.com success story!) and I went out with a guy who described himself perfectly accurately, less the crutches he had due to spinal meningitis he had as an infant that left him in a wheelchair most of the time. He had picked the ground floor bar we went to because he could walk into it. I asked him why he didn't tell me beforehand, and he said, because you never would have gone out with me. I said, sure I would have, and I would have found you less annoying because I would have understood why you were rejecting every one of my suggestions of a place to go to eat. He didn't believe me. At some point in the date it came out that I had been in a wheelchair for a while, and he said, oh, well, it's different for you then. Other people wouldn't go out with me if they knew. And I'm sure he was right. We never went out again, and I'm happy to say it was because there was just no spark there. I said to him, don't people realize ANYONE could be in your situation? It's easier to end up disabled than just about anything. As I found out--you walk outside and BAM. It has nothing to do with you, your karma, your health, your social class, your habits, nothing. But I also see that many people just have trouble relating to something that seems so scary, perhaps in part BECAUSE it could happen to them.
I mean, I have trouble relating to myself in that regard. Now that I'm done with chemo and my physical self feels a little more normal, I have these haunting thoughts all the time. And those thoughts can be summed up with one word, or one question to be more accurate: Really?
Is this really happening? Did I really just go through all this stuff over the last six months? Me? I feel so relatively healthy, and in shape. I went to pilates last week and I'm going to do some personal training tomorrow with a friend. I walk an hour a day, do weights at home, cook, do laundry, pick up babies (I included the one with me and Augie because the kid already looks bigger than me--his head anyway--and he's not even two), talk to people about non-cancer things. How is it possible that I have cancer, or as Gabe says, that I HAD cancer? There's another secret reason for this blog. This blog makes it true, makes it impossible to forget.
I'm still not ready to put my cancer in the past tense, as Gabe is, at least not while I'm burning the hell out of myself. It might sound odd, but it's almost harder to think of the cancer as gone right now. Because then it would be next to impossible to make myself do chemo and radiation. While radiation has not yet caused any side effects for me after the 9 treatments I've done--no skin changes yet, no fatigue--it is a pain in the ass, and it is a crazy amount of poison if you think about it too much. I have to be doing this shit for some kind of reason.
But still, I think with amazement--how could I have been that close to death? What if I hadn't found the lump, and a few months went by, and it spread? How is it possible that I could have died, that I still could? Even when I look in the mirror, or at these pictures, and I see a baldish woman with no left eyebrow, who is exhausted from lack of sleep or sometimes bright red and sweaty from hot flashes, I still find it surreal. That's still me, and I don't look like a dying person, or someone with a chronic illness. I look like me, bald.
It's not that I'm in denial or that I don't believe it, it's just that it seems so damn absurd on the one hand, so strangely commonplace on the other. That's the thing I've never admitted to in the blog. Cancer is terrifying and horrible. But for me, there's a small piece of me that feels like, ok, here's another thing to do, another thing that went wrong with my body that I need to handle. Here we go again. It scares me to feel that way, because this is much more serious than other things I've dealt with, and I worry that I don't take it seriously enough.
And then I realize that I have, and I do. We watched Toy Story 3 on netflix this weekend. Gabe had never seen it, and he sobbed through it, as I expected. It brought me back to seeing it with Lenny just two weeks or so past diagnosis. Crying when Andy leaves for college? Normal, even if I don't often cry. Crying when they have that touching scene of him playing with his toys for the last time? Normal. But you know the scary scene when they're all about to be incinerated before the aliens save them? I bawled at that in the theater. All these toys holding hands, waiting to die, looking at the fiery death that awaited them, trying to get a little comfort at the end. That's how I felt back then, sitting in a theater with my 4 year old daughter, wondering if I would see her turn five. I'm not in that dark place now, but it's still with me. I'm still a little bit darker, heavier in thought than I've ever been.
I had a dream about vampires last night. Half the world had turned into vampires and the other half was fighting them. I was fighting, but I was by myself, and Gabe was with the kids so I didn't know if they were ok or not. One of the strangers in my dream told me I needed to save myself first, because the place they were in was safer and I could get to them later. So I killed some bad guys.
You can see why I don't need a dream interpreter. It's either something like that, with the message slapping me in the face, or it's a dream of me eating product 19 for breakfast, and there's no message at all. Or there's no dream, because there's no sleep. But you get what I'm saying. It's hard when it seems easy, because cancer could just take me, and I might not have a clue. Some people don't live as long as I have since my cancer diagnosis. Some don't live six months and I'm trying for 60 years. It might be too much to ask, so how about enough to just get my kids to that safe place, when they can take care of themselves? Or at least long enough for Augie to stop calling his pacifier his mama? Again, give a girl with cancer a break.
Monday, November 1, 2010
I fully intended to write a Halloween blog yesterday, but I was way too exhausted to do anything so productive. We had a great Halloween, and it seemed to last several days. Lenny and Augie wore their costumes for various events 4 days in a row. I managed to avoid one of the kiddie parties due to my current immunity nadir, but I did go to the parade at her school, since it was outside. Then I probably negated any immunity protection I was trying to keep by going on a date with Gabe, out to dinner and then to a movie at the most germ-infested place on the planet, a mall. I'm glad that I didn't do a lot of hanging out at malls as a teenager. It seems insufferably boring. There were kids literally sitting on the sticky floor in the hall, texting each other. Really? Even Denny's was better than that. Denny's was pretty fun, actually.
Anyway, we went to a Halloween party on the block on Saturday and I managed to stay out until...6:30. Then Augie and I went home. I was completely pooped. And trick or treating was a lot of fun, even though Augie stayed in the wagon most of the time. He loves Halloween--everything about it. He loves pumpkins, and skeletons and monsters, kids in costumes, all of it. Between that and the fact that this wordless child clearly says "baball" as soon as we turn on the world series--I mean before there are even players on the field and the announcers are still talking--there is increasing evidence that he has, in fact, been here before.
If only I believed in that kind of stuff! That would be a nice comfort in these circumstances. But back to Halloween. For the party on Saturday, Gabe and I went as Britney Spears and KFed (in his skinny days). We had to explain the costumes, but it worked, I think. It would have been better if it wasn't so cold that Gabe needed the hoodie over the undershirt (I refuse on principle to say "wife beater"), especially since he had the boxers hanging out. And I ended up with a jacket on over the schoolgirl outfit, which kind of ruined the effect. For Halloween itself I was just mod, because it was too cold to go bald.
We had so many trick or treaters that we ran out of our 10 bags of candy by 5:15. It was crazy! People come in vans to this neighborhood to trick or treat. That's fine for the most part, as this year the majority were kids with costumes. But I don't have a lot of patience for teenagers wearing normal clothes pretending to be some rap star or vague celebrity. I dressed up for Halloween once as a teenager and went trick or treating with my boyfriend for about 5 minutes. We just did it for fun, but we did have costumes, and we got a few pieces of candy. I would have felt weird going to a bunch of houses with a huge bag of candy at age 15. So I'm the rude mom who chastises the kids and sometimes refuses to give candy if you don't have a costume. Luckily, Gabe was the one handing out most of the time.
None of this blog is particularly enlightening, I realize, but that's because I think I finally have chemo brain, but it's not chemo brain at all. I'm losing my mind from lack of sleep. I fell asleep at 5:30 this morning, only to wake up an hour later when radiation called to say their machine was broken and I might not be able to come in. I waited over an hour for radiation last Friday. Since I only needed xrays the first day (and I'll get them once a week), all the other days were 5 minutes of treatment. But I feel like I wait forever, and I'm the youngest person there by decades. Cancer treatment is just not made for the young or for anyone who has to do anything else with their lives. They are under the impression that I'm still working, and I'm going to keep it that way, or I'll never get out of there. I have a husband who has to get to the train, two little kids who have to get to daycare. Our mornings are the same panicked rush that anyone has when 4 people need to get 4 different places by 8 AM. It's especially hard when I never get up early, since I fall asleep around dawn. I would like to stay home with the kids sometimes, since that was one of the points of me going on disability, but to do that, Gabe needs to stay with them until I get home from radiation. Since we are less than 5 minutes from the hospital, he should be able to get the 8:30 train if I do radiation at 8. Forget it. I didn't get home today until 9:15. He would have even missed the 9:20 train at that time and would have had to take half a day off of work. Last Friday one of our cars was in the shop so he was walking the kids to school--I had to call from the hospital phone (no cell reception in the basement, and all radiation departments seem to be in the basement) to tell him I wouldn't be home.
It's getting on my nerves. This is supposed to be the easy part. I've just learned that all the radiation patients from another hospital have been transferred to my hospital while their facilities are modernized. Really? During the exact 6-7 weeks I'm doing radiation? Sigh. I don't mean to sound like a complainer, or maybe I do. I'm in a complaining mood right now. Today I talked with the older man who always goes before me. They finally let me go before him this time, since he said he had nowhere else to be and I had already waited more than half an hour. While I think that everyone's time is valuable, I did appreciate that. I actually have a lot of other places to be, even if I didn't work today. I will be working some days, so I can't wait around forever, and if I am going to be waiting, I could be driving my kids to school so my husband actually gets to work on time.
Anyway, I learned that this man--a sweet old guy who is hard of hearing and has a heavy Irish brogue--has breast cancer too, and it spread to his lung, since he had no clue that men can get breast cancer and he didn't get it checked out until he felt a pain in his shoulder. Another woman who I see there every day is probably in her late forties and has breast cancer as well. She has all her hair. She is stage two, and avoided chemo. She kept trying to tell me that at stage one I shouldn't have to do chemo. Who is my oncologist? Did I take this test? And on and on. I said about a hundred times, I am triple negative. It doesn't matter what stage I am and they didn't do further tests, because I had to do chemo no matter what. I wanted to say, you don't know what triple negative is? Look it up! Let me read the paper!
And when I almost snapped at this lady who is also going through cancer treatment I realized just how damn tired I am. I literally have three hot flashes every hour at night. I get soaked with sweat. The cruelest part is that I usually have a hot flash at the exact moment that I'm falling asleep. I'm convinced that hot flashes have something to do with the body's metabolism, and how that interacts with hormones, when things start to shut down for the night. I have them during the day too, and they are especially bad when I try to take a nap, so it has to have something to do with the body at rest. I am exercising less these days because I am not going to the gym at work and I can't do water aerobics, but I am walking about an hour a day and I'm doing some weights and toning exercises four days a week at home. This is supposed to help, as is acupuncture, but nothing is working. I started vitamin E again today, since I'm done with chemo and the bleeding that it causes shouldn't be a problem. I stopped taking beta blockers, so if there was anything I could take for this, I think it would be fine. But I can't take anything with estrogen, even though I'm triple negative, and that includes soy. For most women with the extreme hot flashes I have, there is some relief. There's also the fact that it is happening to them 15 or 20 years later, so they don't have little kids at the time. How can I simultaneously have an infant AND menopause? It is so hard to work or behave like a normal person, though I try.
And it's so different from other kinds of insomnia. I can try to relate to people my age by comparing it to the insomnia you get at the end of pregnancy or the tiredness you feel with a newborn. But it's really pretty damn different. There's the tiredness from being in cancer treatment, having gone through four months of chemo and jumping into an annoying radiation routine. That is heavily compounded by getting an average of about 1.5 hours of sleep a night--total. Last night it was less than an hour. I took an hour long nap this afternoon after trying unsuccessfully to go back to sleep after radiation. How would you like two hours of sleep a day? With a newborn, you might not get a lot more than that, but you know what? You also are taking care of a newborn, and you're probably nursing. They are adorable and warm and you're doing something wonderful. Even the uncomfortable end of pregnancy is still worth it for what you get in the end. This is just some residual bullshit from the poison I had to take for CANCER. What I would give for those sleepless nights when I was nursing Augie. I sure as hell can't do that anymore. This is just depressing.
I hope to hell these hot flashes go away, even if menopause doesn't. I really hope that goes away too, because I hate feeling old. After trick or treating we were having pizza with some of our neighbors. I must have been bright red because someone asked what was wrong. Oh, I'm having a hot flash. Uh-huh. Is that a normal thing to have to say when you're 35 and there are a bunch of little kids running around? It's not like they're my grandkids. Sometimes I feel like these pictures of me, or my public persona, is someone else entirely. On days like today I just feel old. I have cancer. I'm bald (well, not really, but to me this fuzz looks even weirder than my cueball--there's always something else to get used to these days). I'm in menopause. I have hot flashes. I probably can't ever have another child. I worry about dying.
So this morning after not being able to sleep, I just cried. I don't do that much anymore. I just felt so tired and defeated. Maybe hormonal too--who knows? But then I reminded myself that yesterday was still a good day. We had a lot of fun. Gabe and I have managed to spend time together recently, on dates, at home, and I'm getting used to having a normal sex life again even though I'm a little different. We've figured it out and are almost like we used to be in that regard. We saw our friends, the kids had a great time, I made pancakes in the morning. Even on days like today I do something productive--I made dinner and I made a new quiche recipe for our breakfast tomorrow. I'm getting nothing else done though, as I try in vain to nap, and I spend my waking hours of productivity either cooking or exercising.
So even on bad days, there are still good moments. My quiche was awesome. They were really nice to me at the deli. There wasn't a cloud in the sky. Augie fell asleep pretty easily and Lenny was done with her dinner before 6, a new record. But this deep tiredness threatens to make it impossible to truly enjoy these things.
At the same time, even on the good days, I have bad moments, like admitting to my hot flash while eating pizza, which seems absurd and surreal even now. At the party on Saturday a little girl just walked up to me and stared. She stood her ground. I looked back at her until her mom asked if she was staring at me. Yes, I said. I'm used to it. I wanted to say, what, haven't you ever seen a bald lady before? Honey, it's not that interesting! But I didn't. I just laughed. What can you do?
I'm so used to my bald head that I'm surprised when anyone reacts to it at all. A guy who used to live on our block and who is also bald (on purpose) was walking with us while the kids trick or treated. He said he wanted a picture of me and him together, now that he learned I was growing my hair out. Why are you doing that? Why don't you just cut it if it's growing? It looks good that way. I've been doing it for 10 years. I thought, huh. He knows what I looked like before and is surprised that I want to have hair again. Interesting.
I don't want to politicize my blog but I'm continually fascinated by the different reactions I get from black folks and white folks about being bald. White people seem to either think it looks strange or if they compliment me they say "you have such a nicely shaped head" or something and then say it looks great. I get many more compliments from black folks, and it's usually something like "I like your hair," or "that's a good hairstyle for you." Several black women--total strangers--have told me my hairdo is sexy. Do you see this subtle difference? It's just a hairstyle, being bald. There's no hair but that's no matter. To white folks, it's a bald head. Important? No, but interesting. I didn't choose to be bald, but I guess if there's nothing to be done about it, I can at least learn a little bit about how people see the world by their reactions to seeing me with my baldness. It's kind of like learning how people view things by seeing how they react to someone having cancer, having seizures, being in a wheelchair. These things are not preferable to the alternative, but perhaps in my increasingly fewer moments of clarity and reflection, they are more instructive.
On that note, I hope people are voting tomorrow. I voted last week. Chicago and Illinois are going to hell in a handbasket, and I don't know that any of us can do much about it, but we should do what we can. Since I live here, maybe I can actually vote tomorrow. That would only be twice--it's probably even legal.
Good night--at least it will be if I can sleep a little. In the meantime, go Giants! It's the seventh as I write so that 3 run homer just happened. I wish Augie was awake. Baball!!