I need to start this post by saying that I'm sorry if I offended anyone by using a Shakespearean quote for the title. I am not a long-dead Englishman, nor do I intend to imply that I am anywhere near as interesting as Puck, though the last time I attended a performance of A Midsummer Night's Dream (at the Shakespeare Theater in Chicago, with my kindergartener, on a school night), a bald woman was playing Puck.
So there's that.
Regardless, I'm writing this today because I'm having one of those parenting moments that is compounded in difficulty by the fact of me having had cancer.
I have a 3.5 year old who is very cognizant of death, and he wants to talk about it--a lot.
Some would say that it's a stage, or that all kids go through that at around his age. I disagree. I remember my brother being very concerned about death and about the bad things that could happen to people, but honestly, I was not--not until I got hit by a car when I was 9 and actually almost died. Even then, once I admitted to my grasp of mortality and imminent death, I went back to normal, concentrating on the day to day aspects of life.
My daughter is like me. Lenny is extremely bright, very aware of what life is all about and how things relate to each other, but she is also very focused on her own small version of life, of what comes next. And then, there's Augie.
He's the kid we are convinced has been here before, because nothing else could explain him. You strip away the crazy antics and the cuteness and the wild red curly hair and you are left with a person who seems to understand the adult world better than most of us adults.
This is the kid who grabs your face with his hands, looks you in the eye, and kisses you. The kid who nods his head in appreciation of your choice of wine. The one who sees a pizza delivery car and proclaims that it looks like a police car because there is something on top of it, and you realize he is only pointing this out because you are going over the speed limit. This is the kid who seems fearless, but shuts his eyes when crossing a bridge because "the car is too heavy and we might fall." The one who turns away when the trapeze artist is doing her most complicated tricks, because he doesn't want her to "fall all that way and die."
He is the kid who will ask me, so earnestly, "When I am in fourth grade, will you die?"
And I, being me, being in the situation that I am in, take his question seriously and say: "I hope not. I'm young and healthy right now, and I plan to be that way then too."
Augie doesn't really understand that I had cancer. I mean, he knows about it. We talk about it. But he doesn't remember any of that time, and if he sees a picture of me bald, he knows it's me, but he speaks about it devoid of any context of cancer. It's just another haircut to him. He knows that cancer is bad and it can kill you, because Lenny casually says things like that sometimes. But his interest in death is larger than that, and is not related to me--I know that.
Augie knows that we all will die eventually. He is just too young to understand what eventually means; to him it could be tomorrow, or in 4th grade, or in 500 years. He recognizes the impermanence of life, the thing that is most difficult for anyone to discuss. He says things like "I don't ever want to leave this house," because he knows that he will, and he loves us, and it makes him sad. He talks about "when I'm grown up Lenny will not be with me," because it breaks his heart. He is clinging on to those damn mamas because he knows he is too old for them, and he doesn't want to be too old. Hell, his interest in the legal drinking age is probably tied up in all of this too--or at least I'd like to believe he's not already planning his egregious hell-raising stage.
This is a tough one for any parent--trying to figure out how much to say, what to reveal, what to leave alone. It's a balancing act of answering his questions honestly and reassuring him at the same time. But for me, it is also so painful, for entirely selfish reasons.
Like many people who have spent time cheating death--and I say that not just as a cancer survivor but as a survivor of other things as well--I walk around with death as a constant companion. I've made my peace with the man, I suppose. I stop myself from going to that place that allows me to think about eternity after I'm gone, because I don't want to wander the world looking at people and seeing nothing but bones. A lot of my personality--the lightheartedness, the lack of pretension, the fact that really little things can please me so easily--is probably directly related to this knowledge that I've had for almost 30 years. Death is coming, for all of us, so try not to sweat the small stuff.
These days, it's been harder for me to just shrug and repeat that refrain. Maybe that explains the bourbon or the gin toddys I have at night. Maybe it explains the constant need to move my body, even while working in the office or at home--I have this inability to sit still, to be immobile, just like my son. This has gotten worse for me over time, not better. People say he will grow out of it, but I doubt it. Augie knows what's coming. He wants to feel as much as he can in the meantime. I understand him.
How can a parent admit to the eventual death of a child? It is impossible to contemplate, except with the understanding that of course I will go first. If I go early, that will make it easier to believe that my kids will live to be 300. But if he needs to acknowledge it, all I can do is acknowledge it with him and tell him that eventually is a very, very long time from now. Could that be a lie? Sure, I suppose. But I know my son. I understand him, as I said. He knows that though I am his mother, I have not one bit of control over life and death. And so he says to me, "mom, come on...lie to me."
So I will. And he will feel better, knowing that I am willing to look him in the eye and take responsibility for something I cannot possibly take responsibility for--his eternal safety and happiness. It is the fact that I would if I could that comforts him. And so we talk about death while we eat cereal, and sometimes I get exasperated with him over it, just like I get exasperated when he takes one bite and decides it's time to run laps around the house before he takes the next one. It's all in a winter's morning at our house.
It's strange loving people while working so hard to push them away from you, so they can walk away and become themselves. As parents, we think that we have these conflicting feelings on lock, but really, kids feel it too. And it's hard to know whether we should shield them from all the knowledge in their little brains, or work with them on finding an appropriate place to put it. I guess I am working towards the latter.
All of this made me think about a poem I wrote for Lenny just after she turned one, when she learned to walk. The poem takes place in early January and focuses on the time when she was about ten months old and starting to grasp the concept of walking. One of my greatest cancer regrets is that I don't remember watching my son learn to walk. He took his first tentative steps right around the time of my surgery, and really got moving while I was doing chemo, and I was so sick that I missed it. And now all he does is run, like he is hellbent on all the places he needs to go, until he slows down and looks at me with those old eyes and says "Kiss, mom. I love you."
Me too kid, me too.
Walking
by Katy Jacob
It’s started again.
The whole cycle, the twelve tests.
Because we live here,
you get to see it all at once—
early heat, a river of ice,
eighteen shades of blue.
Or you would, if we let you out.
But the world around the living room table
is a grand place, it exhibits signs
of what is to come, or what is possible.
Cold grooves in the floor,
hairbrushes, paper and keys,
a place to hide things.
You’ve put your faith there.
We can’t know what will happen
in your mind as you let go.
When you do, we’ll sink back
into ever lightening evenings,
and touch this table,
knowing that’s where you learned
to let your heart leap up
as your feet traced a month’s worth of days.
And knowing too that we are not the only ones
who impatiently tell time
by how long it will take us to get to
the places we’ve never been
from the place someone who loves us
will always want us to return.
Thursday, January 24, 2013
Thursday, January 17, 2013
Day 938: Cancer Hoax
As I sit here, 32 months after starting this blog, I would love to be able to say this to you:
PSYCH!!
But alas, I can't do that.
I actually had cancer. My cancer was real. I might still have it, for all I know. It might come back, I might die young, and even if not, I live with that fear.
So these people who make shit up about cancer are really starting to piss me off.
Today is a bad day for those of us who don't equate "lying" with "cancer."
We've got Lance Armstrong to deal with, as he goes and talks to Oprah to confess to something that I am supposed to care about because he had cancer, and I had cancer, and therefore we are the same person yadda yadda. During cancer treatment, it was all I could do to stop myself from losing it on people who would tell me that I would make it because "look at Lance Armstrong." OK fine, I'm looking at him. He had testicular cancer, people. His cancer metastacized to the liver and lungs and brain and you know what? Whether or not he doped and lied and acted like an asshole, whether or not you think he is a hero or a scumbag, here's the thing:
He's still alive.
Women with metastatic breast cancer, especially that which spreads to the soft tissues, especially if it's triple negative, will NOT, let me repeat, will NOT end up like Lance. Prognosis is given in months usually, not years. There is no cure.
So no, I did not relate to him, not even for his cancer stuff. I also don't think there's any reason that cancer patients can't be both heroes and assholes. We are people. Having cancer should not change that fact, so judge the guy on some other basis and please leave the rest of us out of it. We're all sitting here at our day jobs, neither rich nor famous, hoping for the opportunity to see our bodies decay naturally, and we don't have time to listen to that crap.
Thanks!
Now, on to the other side of the lying about cancer coin. If you go to wikipedia, you will find all kinds of information dedicated to this apparently popular concept of the cancer hoax. People getting money based on false reports of cancer. Women shaving their heads and their eyebrows so they can play dress-up cancer. College football stars who claim they really did believe their girlfriend was a real person, a person who died from leukemia.
If you ask me, there's no way in hell Manti Te'o wasn't in on the whole thing. It's impossible. But, you didn't ask me. So let me say this.
I'm glad that dude wasn't MY boyfriend.
Look--I met my husband online. We exchanged a few emails. We met in person for dinner. We started dating and sleeping together like normal, actual people, and we fell in love and got married and had kids, so I am standing here to tell you it can happen. And then, after all that, I was diagnosed with cancer. REAL CANCER. And he cared for me, shaved my head, injected syringes into my hip to keep my white blood cell count up, consoled me while I vomited, took care of our kids.
He sure as hell didn't say, oh you have cancer? I am too busy to visit right now. I have to go play football. And I will also be too busy for your goddamn funeral, and oops, I forgot to write an obituary.
No, he didn't say that.
I cannot even wrap my mind around these sick people who make shit up about cancer. It makes me swear even more than usual. It's especially bad when it's done for money, or to garner sympathy in order to win a trophy, or for some other inherently selfish reason. I know that there are people out there with some form of mental illness that leads them to lie about having a disease, and though it's very hard for me to sympathize, that's at least better than just being a complete jackass who is looking out for himself and doesn't give a damn about people who are actually suffering from the disease that he is LYING about.
When I had cancer, I felt extremely lucky and grateful that people helped us like they did. Friends and family brought us meals, did chores for us, helped watch our kids, and occasionally ran errands. They sure as hell didn't give us MONEY. Now, I don't begrudge people who do get money through fundraisers when they have cancer, because cancer is an extraordinarily expensive disease. It can wreak financial havoc on a family. In a way, I was "lucky" to have had a pre-existing condition (epilepsy) that required me to sign up for HMO rather than PPO insurance, because I went through all the crap I went through and paid for almost nothing. But I get it. And the truth is, most cancer patients would gladly just have the prescriptions and procedures covered by insurance than take money from folks. And we sure as HELL aren't seeking fame.
And we are the very real people who are affected by other people's make-believe. When I was going through chemo, I started having difficulty figuring out how to balance work and cancer treatment. By that I mean that while my co-workers and managers and HR staff were sympathetic and flexible, standard policies were not working well for me. Short term disability, for example, should have been an option. But with my chemo schedule, I would have a few very bad days and then feel fine--well not normal person fine but cancer patient fine--for a week or more.
I argued that it wasn't like having a broken bone or having surgery. It wasn't like oh ok, I'll take 4 weeks off and then be back to normal. It was months of treatment, with highs and lows that were easy to predict along the way .I said that there was no reason I couldn't do my research job during treatment, especially since my manager didn't mind me telecommuting if necessary. I remember when I first started chemo and I had the morbid insomnia, and somehow my mind still functioned well even on no sleep at ALL after multiple days. My mind was fine, so I could work, but on the last few days of that I could not get out of bed without falling over. I called my boss and told her this. She said fine--work from bed today. And I did; I was quite productive actually, probably because I was going insane. And when I started taxol chemo, I felt very good, comparatively, and then I learned that my WBC count was so low that I could die from any germ, so therefore I couldn't be around people. Again, I worked from home after clearing it with my manager.
Over time though, it just got to be a pain in the ass to deal with the paperwork. My boss came to bat for me. She was great. The HR rep felt for me, but said that the policies were as they were so that people could not take advantage of them. I sat there for a minute, absorbing this.
I looked at her very carefully and pointed to my bald head. I am not making this up.
She was shocked and said, I know, I know! Of course you're not.
At the end of the day, I worked through two surgeries and 7 chemo treatments. I took time off for three months during the "easiest" part of treatment--the last chemo and radiation--not because I could not work, but because I was tired of trying to jump through hoops that were erected to deal with hypothetical people who would only experience disease hypothetically.
And that's a very real example of how the liars in the world cause real life problems for people who actually have the disease that others just play on TV.
If you want to make up a girlfriend, have at it. Delude yourself and everyone around you. Spend time on your elaborate lies. I don't care. You can even kill her off in a freak accident. Just leave cancer out of it, ok?
Again...thanks!
As punishment, I think anyone caught perpetrating a cancer hoax should be ordered to spend time in a children's hospital where there are children dying of cancer. Talk to their parents. Try to figure out how to respond when a dying child speaks of the future she will never have, or worse, when she doesn't speak of that future, because she knows she will not have it. Go to any hospital in the country and find women with breast cancer, REAL cancer, because every single hospital in the country is bound to have some of these women. Ask them how it feels, what it's like to do things to your body that you know are atrocious and poisonous but you do it anyway because you have no choice. Read their blogs, especially the really honest and difficult posts that talk about the pain, humiliation, suffering, and death aspects of cancer. Go volunteer at a hospice center. Interview kids who don't remember their mom or dad because cancer ripped them away when the kids were very little.
You can keep your apologies and your contrition and your explanations. That is not what I want from you, cancer hoaxsters.
Do you know what I want?
I want to trade.
I would like to trade for your healthy. I would give you my pretty, or my smart, or my skinny or whatever it is that I've got that you'd like to have, and I would trade.
So that I would not have had cancer, nor have its specter hanging over me and my family.
But I can't.
Because my cancer was real, and everything that I have said about it in this forum has been real, based on my actual experiences and how I interpreted them. They might not be what people wanted or expected to hear, but I promise you this:
These words are true.
Labels:
cancer hoax,
faking cancer,
HR,
Lance Armstrong,
Manti Te'o,
work
Friday, January 11, 2013
Day 932: Chemo: The Gift That Keeps on Giving
Just so you know, one of the more aggravating things about being a breast cancer survivor who has done the typical trifecta of treatment--surgery, chemo, radiation-- and is lucky enough to still be alive a few years later, is how everyone assumes you are "done" and completely back to normal.
Now, most people realize that you are forever changed, even if that is hard for them to say out loud. But the assumption is that you have made it, you beat it, and, well--you're done.
Let's ignore the fact that remission doesn't technically exist for breast cancer. Let's ignore the legitimate fear of metastasis that you live with oh so casually. The thing is, breast cancer treatment stays with you for years, regardless of how healthy you are. Sometimes, vestiges of it are with you forever.
So it is with chemo. Chemo was so hard on me, and so much bullshit happened, and yet, I have recently realized that my body actually handled it amazingly well. I see what other people go through, and that skinny bald girl with no sweat glands who refused most side effect meds seems like some kind of superhuman now that there's some distance between us.
There were all the random signs that my body was extremely angry with me for poisoning it like that, and I did have the heart scare (which turned out to be an allergic reaction to taxol, no matter what any doctor says) and my WBC count did plummet that one time, making me unable to do the sixth chemo session on time. But I bounced back even from that all of five days later. I never had neuropathy, nor chemo brain. My weight dropped but not precipitously. I remained active. I never got too tired to function, even with the morbid insomnia when I didn't sleep at all for five days. I never needed a blood transfusion. I got over menopause. I didn't even burn badly from radiation. And once I was given some physical therapy, I was once again able to do all kinds of exercises that a lot of able-bodied people who haven't had cancer nor chemo can't do.
I was, I suppose, lucky. Or maybe just really healthy, and young, so I could withstand the poison. Who knows? I guess it doesn't matter why.
But chemo changes you, not just through the Kafka-esque experience of it all or the baldness or the way people treat you like you are someone else. It actually CHANGES your body. For example, I really did used to have all of my toenails. Why three of them decided to wait to fall out until two years AFTER chemo, when many people lose many or all of them DURING treatment, I will never know. But there it is. A reminder.
And I have been going back and forth about whether or not to write about the absolute most depressing aspect of cancer treatment that I have dealt with--the seemingly inevitable return of early menopause. I really thought I had beat that. I have voiced my concern over the Flowers for Algernon effect of knowing what I know now about menoapuse, and never wanting to go back, knowing that I inevitably will someday if I live long enough.
I just thought I had more time. I am only 37!
My cycles are short--one sign of perimenopause; my last cycle was only 19 days long and that left me so depressed as I thought of the implications that I just sat down and cried. Even with these new cycles, for a long time, my raging libido was back and I was my old self, sexually speaking. Now...it's different. Nothing is gone nor terrible but I have my days, or weeks, when sex is difficult for me the way it is for many women. I feel completely alien to myself in those times And I am raging against what this means for me, and I am filled with anger over having to kill my healthy ovaries, and I live in fear of what it will be like to have hot flashes every ten minutes all day long again but this time there will be no treatments (not allowed for breast cancer patients) and no end in sight. Call me dramatic. I don't care. It upsets me enough that I can't say any more about it.
I can, however, say something about that gum surgery I had yesterday.
At some point I wrote about how one day, in the middle of AC chemo, I took what I thought was a piece of food off of my front bottom tooth and my entire gum came off. I had an emergency dentist's visit, and was told that it might regenerate. Around Thanksgiving this year, so more than two years later, I realized there had been no regeneration and that sometimes my tooth hurt. I didn't want to lose the tooth, so I went to a few different peridontists, both of whom told me I needed a tissue graft to shore up the tooth and protect it. I dreaded the very thought of the surgery.
And I was PISSED. AC chemo can do a number on your mouth. I remember having to use the mouthwash for dry mouth and using the special toothpaste because I had no saliva left. Do you know how dangerous that is? It doesn't sound bad, but let me tell you, IT IS. Some people lose their teeth or just watch them crumble along with their toenails. People get horrible mouth sores. So, I had this stupid gum thing, and it was probably not that bad in the scheme of things, but it was, and is, a REMINDER. And that seemed bad enough.
I did my research on these grafts. One of the doctors suggested I get the surgery using cadaver tissue. OK, yuk, right? But that seemed like a better alternative than dissecting the roof of my mouth and leaving a gaping wound there to get infected. However, it's very expensive to do it the cadaver way, and that office never bothered to keep in touch with me, so I made the appointment with the low-rent local office that wanted to go old-school.
I considered ways to get out of it, right up until the bitter end. It seems absurd, considering how many things I've been through that are worse. I mean, I've delivered babies for Chrissakes. I've had CANCER. Who cares about mouth surgery?
But it's like something out of a horror movie, right? There's just that memory of Marathon Man in my mind. Yikes.
But once I was there, I don't know--it wasn't that bad. He only used local antisthetic (a hell of a lot of it, as we redheads require more anesthesia--seriously, true story), and the whole thing took maybe 20 minutes. He put a washcloth over my eyes "to protect them," though I'm sure that was code for so you can't see what the hell we're doing to your face. Of course, I could see out of the corner of my eye, so I watched the whole thing.
As an aside, I've always been like that. Medical procedures fascinate me. As a child, I would watch them draw blood during routine checkups for epilepsy. I watched the seven core needle biopsies done with the 15 inch long, half inch wide needle. I watched the chemo course into my veins. I stared at the raw wound on my arm when I was burned at 19 and it was being professionally cleaned.
So, I watched as this dude stuck a scalpel in my mouth and cut open part of my flesh, placing it on another part and threading a few needles into my mouth for stitches. I watched him as he asked his assistant to "dab," meaning wipe off my face--up to my nose, close to my eyes in fact--because of all the blood that had spurted everywhere. Then I watched him put some silly-putty looking stuff over the wounds, though some places actually give you a retainer or something. Again--old school.
Afterwards, I waited for Gabe to pick me up (I had walked over to the office) and sent him over to pick up my antibibiotics (I informed the doctor of the one that I know I am not allergic to--they should just let me write my own prescription at this point). I went to get some ibuprofen from our medicine cabinet only to find that we had none. I had refused the narcotic painkillers--can't take codeine, don't like tramadol--and let me tell you that shit HURT. I kept calling and texting Gabe but he wasn't picking up because apparently he'd left his phone at home. I wanted to kill him when he got home, but he had picked me up an US Weekly, along with The Bourne Legacy and Ted to watch from bed, so I couldn't be that mad. Plus, he found the ibuprofen. I was in a lot of pain; I felt like I had been kicked in the mouth, but you know what?
It really wasn't so bad. I could even eat today on one side of my mouth. I did some conference calls for work. I went to the gym today for a spin fusion class and was almost happy that the pain in my mouth distracted me from the pain I always feel in my chest, or the pain I felt today in my hips because it's a very strange, rainy January day.
Does it hurt? Sure. But I've had so much worse pain, this barely registers on the scale. I didn't take any painkillers at all until late in the afternoon. So, I probably should have done this sooner, honestly, if I hadn't been so damn annoyed at the very thought of having to have surgery because of chemo years after chemo ended.
So this is just to say that the poison that you ingested can stay with you, for a long, long time. That fact is part of what it means to be a breast cancer survivor. And sometimes I write this blog just so I can tell it like it really is, no matter how little people would like to hear it.
It stays with you in ways large and small. When the mail comes, I wonder who the genius is who still sends me Victoria's Secret catalogs, and I decide not to renew my Glamour magazine subscription after almost 20 years because there's so much stuff in there about HAIR and other things that just seem pointless, though it does teach me that this permanent bedhead look I have going on could maybe pass for stylish. And I have to have surgery, and I will probably go into menopause many years before I should, and none of this would have happened if those little tumors hadn't decided to rock my world a few years ago. It is what it is, I suppose.
Here's to healing, for now, and for as long as I get to keep the feeling.
Now, most people realize that you are forever changed, even if that is hard for them to say out loud. But the assumption is that you have made it, you beat it, and, well--you're done.
Let's ignore the fact that remission doesn't technically exist for breast cancer. Let's ignore the legitimate fear of metastasis that you live with oh so casually. The thing is, breast cancer treatment stays with you for years, regardless of how healthy you are. Sometimes, vestiges of it are with you forever.
So it is with chemo. Chemo was so hard on me, and so much bullshit happened, and yet, I have recently realized that my body actually handled it amazingly well. I see what other people go through, and that skinny bald girl with no sweat glands who refused most side effect meds seems like some kind of superhuman now that there's some distance between us.
There were all the random signs that my body was extremely angry with me for poisoning it like that, and I did have the heart scare (which turned out to be an allergic reaction to taxol, no matter what any doctor says) and my WBC count did plummet that one time, making me unable to do the sixth chemo session on time. But I bounced back even from that all of five days later. I never had neuropathy, nor chemo brain. My weight dropped but not precipitously. I remained active. I never got too tired to function, even with the morbid insomnia when I didn't sleep at all for five days. I never needed a blood transfusion. I got over menopause. I didn't even burn badly from radiation. And once I was given some physical therapy, I was once again able to do all kinds of exercises that a lot of able-bodied people who haven't had cancer nor chemo can't do.
I was, I suppose, lucky. Or maybe just really healthy, and young, so I could withstand the poison. Who knows? I guess it doesn't matter why.
But chemo changes you, not just through the Kafka-esque experience of it all or the baldness or the way people treat you like you are someone else. It actually CHANGES your body. For example, I really did used to have all of my toenails. Why three of them decided to wait to fall out until two years AFTER chemo, when many people lose many or all of them DURING treatment, I will never know. But there it is. A reminder.
And I have been going back and forth about whether or not to write about the absolute most depressing aspect of cancer treatment that I have dealt with--the seemingly inevitable return of early menopause. I really thought I had beat that. I have voiced my concern over the Flowers for Algernon effect of knowing what I know now about menoapuse, and never wanting to go back, knowing that I inevitably will someday if I live long enough.
I just thought I had more time. I am only 37!
My cycles are short--one sign of perimenopause; my last cycle was only 19 days long and that left me so depressed as I thought of the implications that I just sat down and cried. Even with these new cycles, for a long time, my raging libido was back and I was my old self, sexually speaking. Now...it's different. Nothing is gone nor terrible but I have my days, or weeks, when sex is difficult for me the way it is for many women. I feel completely alien to myself in those times And I am raging against what this means for me, and I am filled with anger over having to kill my healthy ovaries, and I live in fear of what it will be like to have hot flashes every ten minutes all day long again but this time there will be no treatments (not allowed for breast cancer patients) and no end in sight. Call me dramatic. I don't care. It upsets me enough that I can't say any more about it.
I can, however, say something about that gum surgery I had yesterday.
At some point I wrote about how one day, in the middle of AC chemo, I took what I thought was a piece of food off of my front bottom tooth and my entire gum came off. I had an emergency dentist's visit, and was told that it might regenerate. Around Thanksgiving this year, so more than two years later, I realized there had been no regeneration and that sometimes my tooth hurt. I didn't want to lose the tooth, so I went to a few different peridontists, both of whom told me I needed a tissue graft to shore up the tooth and protect it. I dreaded the very thought of the surgery.
And I was PISSED. AC chemo can do a number on your mouth. I remember having to use the mouthwash for dry mouth and using the special toothpaste because I had no saliva left. Do you know how dangerous that is? It doesn't sound bad, but let me tell you, IT IS. Some people lose their teeth or just watch them crumble along with their toenails. People get horrible mouth sores. So, I had this stupid gum thing, and it was probably not that bad in the scheme of things, but it was, and is, a REMINDER. And that seemed bad enough.
I did my research on these grafts. One of the doctors suggested I get the surgery using cadaver tissue. OK, yuk, right? But that seemed like a better alternative than dissecting the roof of my mouth and leaving a gaping wound there to get infected. However, it's very expensive to do it the cadaver way, and that office never bothered to keep in touch with me, so I made the appointment with the low-rent local office that wanted to go old-school.
I considered ways to get out of it, right up until the bitter end. It seems absurd, considering how many things I've been through that are worse. I mean, I've delivered babies for Chrissakes. I've had CANCER. Who cares about mouth surgery?
But it's like something out of a horror movie, right? There's just that memory of Marathon Man in my mind. Yikes.
But once I was there, I don't know--it wasn't that bad. He only used local antisthetic (a hell of a lot of it, as we redheads require more anesthesia--seriously, true story), and the whole thing took maybe 20 minutes. He put a washcloth over my eyes "to protect them," though I'm sure that was code for so you can't see what the hell we're doing to your face. Of course, I could see out of the corner of my eye, so I watched the whole thing.
As an aside, I've always been like that. Medical procedures fascinate me. As a child, I would watch them draw blood during routine checkups for epilepsy. I watched the seven core needle biopsies done with the 15 inch long, half inch wide needle. I watched the chemo course into my veins. I stared at the raw wound on my arm when I was burned at 19 and it was being professionally cleaned.
So, I watched as this dude stuck a scalpel in my mouth and cut open part of my flesh, placing it on another part and threading a few needles into my mouth for stitches. I watched him as he asked his assistant to "dab," meaning wipe off my face--up to my nose, close to my eyes in fact--because of all the blood that had spurted everywhere. Then I watched him put some silly-putty looking stuff over the wounds, though some places actually give you a retainer or something. Again--old school.
Afterwards, I waited for Gabe to pick me up (I had walked over to the office) and sent him over to pick up my antibibiotics (I informed the doctor of the one that I know I am not allergic to--they should just let me write my own prescription at this point). I went to get some ibuprofen from our medicine cabinet only to find that we had none. I had refused the narcotic painkillers--can't take codeine, don't like tramadol--and let me tell you that shit HURT. I kept calling and texting Gabe but he wasn't picking up because apparently he'd left his phone at home. I wanted to kill him when he got home, but he had picked me up an US Weekly, along with The Bourne Legacy and Ted to watch from bed, so I couldn't be that mad. Plus, he found the ibuprofen. I was in a lot of pain; I felt like I had been kicked in the mouth, but you know what?
It really wasn't so bad. I could even eat today on one side of my mouth. I did some conference calls for work. I went to the gym today for a spin fusion class and was almost happy that the pain in my mouth distracted me from the pain I always feel in my chest, or the pain I felt today in my hips because it's a very strange, rainy January day.
Does it hurt? Sure. But I've had so much worse pain, this barely registers on the scale. I didn't take any painkillers at all until late in the afternoon. So, I probably should have done this sooner, honestly, if I hadn't been so damn annoyed at the very thought of having to have surgery because of chemo years after chemo ended.
So this is just to say that the poison that you ingested can stay with you, for a long, long time. That fact is part of what it means to be a breast cancer survivor. And sometimes I write this blog just so I can tell it like it really is, no matter how little people would like to hear it.
It stays with you in ways large and small. When the mail comes, I wonder who the genius is who still sends me Victoria's Secret catalogs, and I decide not to renew my Glamour magazine subscription after almost 20 years because there's so much stuff in there about HAIR and other things that just seem pointless, though it does teach me that this permanent bedhead look I have going on could maybe pass for stylish. And I have to have surgery, and I will probably go into menopause many years before I should, and none of this would have happened if those little tumors hadn't decided to rock my world a few years ago. It is what it is, I suppose.
Here's to healing, for now, and for as long as I get to keep the feeling.
Labels:
chemo,
gum surgery,
luck,
menopause,
new normal,
side effects
Thursday, January 3, 2013
Day 924: A Letter to My Daughter on Her Fifth Birthday
As I have been trying to help promote this year's Listen To Your Mother--Chicago show (submissions are due January 15!), I thought it would be a good idea to include the text of the piece that I performed in the 2012 show; this piece, in this exact form, hasn't been posted here yet. You can see the video on youtube (turn up the volume!), read the producers' feelings about it, or ponder my own thoughts about what the experience meant, but maybe the most useful thing would be to show you what I said. And yes, I mean said, not read. Because Lenny was in the audience, and I said this to her.
A Letter to My Daughter on Her Fifth Birthday
by Katy Jacob
Dear Lenny:
Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”
And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.
In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.
We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.
I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.
I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.
I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”
As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.
Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.
I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.
--Mom
A Letter to My Daughter on Her Fifth Birthday
by Katy Jacob
Dear Lenny:
Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”
And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.
In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.
We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.
I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.
I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.
I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”
As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.
Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.
I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.
--Mom
Labels:
blogging,
breast cancer,
daughter,
death,
listen to your mother,
LTYM,
mortality,
motherhood,
writing
Subscribe to:
Posts (Atom)