Over the last year and a half, a lot of people have asked me what inspires me to write about the random things I write about in this blog. Most of the time, I have no sufficient answer for that question. The real answer is something like, well, I had this rare and aggressive form of breast cancer at a very young age, and there are a lot of things about that situation that piss me off, so I write about them here so that people who are around me on a day to day basis can actually stand me. Sometimes there's that strange, postmodern social media-infused pressure to write on certain days, such as Thanksgiving or birthdays, anniversaries or on Christmas. Every once in a while there's good news to report, such as when I have a clean scan, and I know people who care about me would like to hear that, and I know I will never pick up the phone and tell them, unless they are my mom and my brother.
And even more rarely, something literally inspires me to write, and that's what happened this morning when I was reading a story in the Tribune about how Maggie Daley inspired countless cancer survivors in the Chicago area and elsewhere.
As I said in the last blog, I truly admired Maggie Daley for how she got things done, and how she lived with metastatic breast cancer for over nine years. I admired her long before I had cancer myself. To start, I admire anyone who is married to a public figure and manages to keep their sanity. Mayor Daley was like some kind of God here, and he was an international, not just a local, politician. Being married to him meant that Maggie's life was not her own, no matter how private she was. She seemed so capable of keeping her shit together, developing her own interests and passions, and never making any huge gaffes in the media, which is something her husband was essentially famous for doing.
Then, she found out she had an incurable form of breast cancer, and even that had to take back stage to everything going on with Rich. The media handled things well and supported her immensely for the most part, though strange things happened. I can't count the number of stories that have been rehashed about Mayor Daley crying on camera when talking about her initial diagnosis as stage four, about how he seemed dazed and out of it for a while after he learned the news. The implication is that it is surprising that he loved his wife, that he had feelings. But we all knew that! This is the mayor who turned purple and looked like he would explode during the power outage in the loop back in what, 2000? The guy who had nothing if not emotions. So he really loved his wife and thought it was horrible that she would have cancer for the rest of her life, that she would either presently or eventually suffer a great deal, and reporters act surprised?
We're a strange culture. But let me get back to what prompted me to write. This story in the Sunday paper gave many of the quotes that are now familiar to those of us who have been following the coverage of Maggie Daley's death. They talk about how stoic she was, how she never cried, how she went to a public function the day after she fractured her leg due to the metastisis to the bone, how she kept on going, gave back to others, never complained. The story was trying to convey how inspirational this has been to so many survivors of cancer, especially metastatic breast cancer, and here I was, reading it, getting angry, and feeling like some kind of cancer bitch. I was thinking, what is this telling all of us? That it's not ok to cry, to be weak, to be in too much pain to go out, to hate all the public breast cancer functions? Is a Pollyannish attitude the only acceptable way to live with a horrible disease?
I am sitting in the office of my own house while I write this, honestly afraid that stones might come flying through the window because I just said that in a public forum. I am not saying that I think Maggie Daley's example put too much pressure on the rest of us. What I am saying is this: She was an inspiration, because she remained herself through the whole ordeal. She would not have been able to be the First Lady of Chicago for most of her adult life if she was not positive, modest, charitable, and stoic. She was an immensely public figure, and none of us has a clue how she acted at home, and the rest of her family made sure that would be the case. Maybe she cried all the time. Maybe she yelled at her kids. Maybe not. It doesn't matter. What I would like to take from her example is that it is possible to remain yourself through the crappiest of circumstances. I think most people with chronic illnesses, most people who have suffered in any kind of way in their lives, know this. I just reject the idea that cancer is supposed to make you someone else--even if that someone else is supposedly better than the person you were before cancer.
At the beginning of this nonsense (notice I never say "journey"), I wrote in the blog that I felt guilty that I couldn't be that cheerleader type of person, that I hadn't gotten to that point yet. A few people, who had known me since I was a small child, said variations of the following to me: "Um, Katy, you have never been a cheerleader type. You are a tough and stubborn person. You have a great heart but are not particularly sweet. Maybe we could be those happy cheerleaders for you, because you are probably not going to become one anytime soon." And boy were they right, and I will always be thankful for having people like that in my life.
I am the person who never cries in public, or even in private, because I think it makes me look weak, and I hate appearing weak. But I pulled the tears out, forcing myself to sob, I used the image of a young woman brought to tears to get what I thought I needed--an earlier surgery date, some kind of answers from various doctors who were treating me like a child. I did things that would make other cancer survivors shudder with horror for how backwards I was in my response. At the beginning, I fled from my family, all the time. I left for hour long walks several times a day, missed dinner, couldn't even look at my kids sometimes. I argued with my doctors, acted like a know-it-all (we all should in these situations--you really do know your own body better than any damn expert), ignored all kinds of advice. I didn't think of my kids and how they would feel when I walked around bald. I talked to Lenny about chemo. I thought about leaving Gabe on a few occasions, even in the middle of all the things we went through, maybe because of them. I never took up the habit of talking to friends or family on the phone.
And now, I sometimes feel that I've failed as a cancer survivor, at being the kind of person I am miraculously supposed to be. I am still the hard-ass parent, not the one who rolls around on the floor with the kids. Look, they love me, and they are comforted by me, and they miss me when I'm not here. But I still don't like giving back rubs--Augie asks for one and he gets one, for about two minutes. I am always in charge of cracking skulls around here, and cancer hasn't softened that--not most of the time, anyway. The other day I was supposed to tell Lenny to come inside, since it was dark and she was outside with another, older kid, by herself. I went out and yelled in that oh shit my mom is going to get me voice, Lenny! Come on in...oh well you can come in in a few minutes. I saw her sitting on top of our plastic playhouse in the backyard, with her crush who is five years older, talking to him in the dark. I couldn't make her come inside--I just couldn't do it. I know that she will remember that moment for the rest of her life. I think it's parenthood, not cancer, that has made me a softie in those situations, though.
I don't think I'm much different, and maybe I should be--maybe I shouldn't want to throw Gabe under the bus when he forgets to do laundry or I have to tell him for the millionth time to do some little chore around the house. Outside of manic exercising, which I have done for years anyway just to get some damn sleep, I haven't become a pure-living enthusiast. I've taken to having a cocktail almost every night, something I never did before cancer, maybe out of spite for all the people telling me I'm somehow killing myself in the process. I remember years ago when my boyfriend at the time gave me a birthday card, and it was a picture of a little girl crawling onto the kitchen counter to steal cookies from the jar, looking over her shoulder to see if she's going to get caught. He wrote on the inside of the card: "That's all you, Kate." And maybe it is, maybe it's always been that way with me.
If there was a poster child for breast cancer surviving, she just wouldn't look like me. And yet I feel that Maggie Daley, and others like her, gave me the gift of saying, look, just keep doing what you were doing before, don't let this cancer change you. If you were a stubborn little manic hard-ass, keep it up. It kind of angers me that we collectively assume that cancer made Maggie Daley tougher, that by watching what she went through and how she handled it, she could teach us how to behave. She could teach us how SHE behaved, show us who she was--and she gets the credit for that, not cancer. I daresay she would have been just as interesting and impressive if she had been able to live another twenty years, without cancer. She didn't have that option so she kept on doing her thing. What else can you do? That's just the way it is.
The last thing that drove me to write this was the following part of one sentence in the article I was reading: "Though much of the focus on breast cancer goes to prevention and screening..." Sweet Jesus,can people who write about breast cancer get it together? Unless you call telling women not to get fat prevention, there has been little to no focus on prevention in the breast cancer lexicon. Say it with me: MAMMOGRAMS AND BREAST EXAMS ARE NOT PREVENTATIVE, THEY ARE DETECTION TOOLS. Having the good news from a clean scan does not PREVENT you from having breast cancer, it just means you don't have breast cancer and you should be happy. Feeling a thin hard line in your lactating breast and going in right away to get it checked out, only to find you have three cancerous tumors, does not save you from what you need to do to attempt to eradicate the cancer that through some bizarre, unknown chain of events was already there for years. Perhaps if we understood more about why so many women get breast cancer, and why it turns metastatic in some cases and not others, we could do something about it and bar the proverbial cancer door.
But we don't. So those of us who have had or do have breast cancer, who are early stage or in the incurable camp, really can't sit around wondering why, because it doesn't matter and it doesn't help. We can just do like Maggie Daley did, keep doing our thing, whatever the hell that thing was. Just please give us the credit for it, or the blame, and leave cancer out of the equation. At the end of the day, after all, that's what we're trying to do--leave cancer in the background, and make of our lives something else, for as long as we can.
Showing posts with label weakness. Show all posts
Showing posts with label weakness. Show all posts
Sunday, November 27, 2011
Tuesday, September 7, 2010
Day 124
It seems that summer has come and gone without it really having happened in the first place, at least at our house. I remember when summer was a different creature for me, back in the days when I was in school, even in college. I always worked in the summer, from the time I was very young, but at least the pace was different. I can’t remember when summer meant sleeping in—maybe when I was 11 or so? It’s been a long time. My kids will never really know the joy of the carefree summer, since they will always need to be in school or daycare or camp or something, due to our work schedules. But at least the summer rituals usually apply—swimming, grilling, staying up late to catch fireflies or go to the park, eating popsicles on the steps, hanging the laundry on the line.
Did I do any of these things this summer? Did my kids? I didn’t, not for the most part, as I always seemed to be recovering from surgery or having side effects of chemo or something that kept me apart from the world. We did go on vacation in the early summer, so that was good. Otherwise, I had my first grilled food of the season this past Sunday and I put on a bathing suit the other day to sit in our back yard, just to remember how it felt. Gabe did many of the above things with the kids, or with Lenny at least, but not nearly as much as in a normal year. The loss of this summer makes me wish that it was possible for one of us to be home more. It’s not, of course, unless someone wins the lottery at our house, and it’s hard to win when you don’t play the game.
The summer is only the tip of the icerberg. I’m starting to really worry that the kids resent me, or have just lost too much due to my cancer diagnosis, but they’re too young to really tell us what’s going on. I have become very concerned about Augie. He seems to have lost the few words he ever spoke, and his aggression is getting worse. He is very cuddly and loves people and he’s mostly happy. I’ve just been devastated with worry about him having autism or some other issue, but I know he also might just be reacting to how things are at home. I am going to have him evaluated, regardless.
Lenny is still acting out as well, though she’s gotten a little better. She doesn’t sleep right before or after I have chemo, and she still defies me and throws tantrums, which she never did before two months ago. And I wonder, am I that bad? Have I screwed things up so royally at home? You’d think you’d get a free pass from parental guilt with cancer but it is horrible thinking about what it’s doing to the kids. It’s worse to realize that we might never know how they would be different if they hadn’t had to deal with this.
I thought I’d been better this past week. Taxol has not been fun, and I felt very weak on Saturday in particular. I got the bone pain for sure (more on that later) and it felt like having a really bad flu, with aches in literally every bone in my body (I’m talking toes and fingers too). The day after chemo, I was depressed to find that all of my fingernails were killing me. It felt like I had the bristles of a hairbrush under each and every one. I thought that didn’t bode well for me keeping my nails. I cut them very short, and so far they are still there. They haven’t even started splitting, though they started hurting again today. I’ve heard that putting black nail polish on your nails can help protect them, but that seems either like an old wives tale or an excuse to rock black nail polish at work. Regardless, I now have 5 different black nail polishes, so I can start a new fashion trend: bald goth, anyone?
Anyway, food hasn’t been staying with me so well, but I’ve enjoyed eating it. Most of the time, I don’t feel sick. I’m tired every day, but I think that’s just the cumulative effect of chemo. Maybe my body was convinced it was done, and then I went back and did more of this. But on the whole I have been able to be a more normal mom, a more functional person. The weather has finally changed and it’s been beautiful, cool even. I made muffins with Lenny over the weekend. We went to a lake in the south suburbs and walked around with the kids. I ate at the dinner table. I did a little laundry. This might not seem exciting, but these were things I hadn’t done in a while. We even went to a minor league baseball game last week. But my relative normalcy doesn't seem to have fooled my kids, not at all.
That minor league game was the first time that I wore my hair outside of the house. I wore it to the lake too. It was cold-ish on both days and I didn’t want to be bald, and I also didn’t want to deal with the impact of being around a bunch of kids who didn’t know me and getting the questions. Wearing my own hair, with a scarf or a hat, was a truly strange experience both times. I looked so normal—just like myself. People treated me that way, guys looked at me, women commented on the red-headed family. I could reach up and play with my hair just like I used to do. Did anyone notice when I started crying? It happened several times. It just made me so sad. I used to be this person, and now I’m not. It’s not just about hair, it’s about the illusion of normalcy. I know that is so important to many women undergoing cancer treatment, but it’s the pretend-normal that is really rough for me. I’d rather just have it out there. I’d rather be the bald, obvious cancer lady, than be reminded of how I used to be and how people used to interact with my family.
It’s been a rough week emotionally. I have had no desire to write here at all. Maybe it’s chemo bringing me down, or hormones, or the rough times with the kids. When we were heading off to the lake, Lenny said “I wish I was at school and I didn’t have to spend time with the family.” Now, I did what any parent of a 4 year old would do in that situation. I told her that wasn’t nice and that I know she didn’t mean it, and that we would have fun. And then I left the room and cried. Maybe my daughter hates me, or maybe she loves me too much. Either way, I was thinking, what if this is the last time we get to do this? Why can’t we enjoy it? I can’t say that to her, of course, and it’s too much pressure to expect her to understand what’s going on in my head, but my god it’s hard.
Because this bone pain is scaring the shit out of me. Not because of taxol—that bone pain I can deal with, and it’s expected. What worries me is something different. Off and on for the last several months my spine has been hurting. I asked the surgeon about it back in June and she said it was highly unlikely that is was anything. She didn’t think I needed a bone scan, though I could have one if I wanted it. It seemed to get better so I stopped worrying; they say the pain from bone cancer never alleviates. I asked about it again when I felt it while I was on a/c, and the chemo nurse said that would be due to neulasta. Now Taxol is supposed to be to blame.
All I can think is, what if not? Breast cancer is most likely to metastasize to the bone, and the spine and hips are the most likely places. It’s unlikely to have “mets” when you’re stage one, perhaps unlikely for anything to grow during chemo. However, if that is what it was, that would be it for me. I would be stage 4, doing cancer treatment for the rest of my short life. They have “made great strides” treating bone cancer that has metastasized from the breast. They now give you up to 2 to 3 years to live.
Two to three years. That’s what I’ve been thinking about this week. Not getting to see Augie go to kindergarten. Not reaching 40. Writing letters to my kids so that they would remember me. Hoping Gabe marries someone else so everyone wouldn’t be stuck thinking about me all the time.
It sounds morbid because it is, I guess. And if I was just being a hypochondriac or having some kind of bizarre depressive episode, that would be different. It’s hard to be a hypochondriac when you’re my age and have cancer. Only 5% of women with breast cancer are under 40. I am one of them. Why couldn’t I be one of the 5-10% of women with no lymph node involvement who see their cancer spread elsewhere? I know I should just get the bone scan. I haven’t done it because the very thought terrifies me. It’s one thing to do what I’ve had to do with breast cancer. I just can’t imagine facing those test results and getting the answer I got from the breast biopsy. With this, there would be no going back to normal ever, and not much time to be abnormal.
The only thing keeping me going through chemo right now is the notion that things will start to feel more normal in a few months, that I have the possibility of a normal life when this is done. Is it selfish to say I don’t want to give that up too? I understand now where denial comes from, and I can see it now as a source of strength if you can really get into it. If I can stretch my denial from just not doing the scan to actually convincing myself that my bones are fine, that would be such a relief!
I thought about not writing this blog at all, because I know no one wants to read this—including me. I know I’m not supposed to have these thoughts, that I should be positive, and that it does put a real burden on people who care about me to hear me say these things. But maybe I just need to keep it real for myself, at least. That is probably selfish too, I realize. There's just so much pressure to feel things it's hard for me to feel; I need a place to acknowledge everything else, I guess.
I was talking to my ob/gyne last week about my menopause issue (my body still hasn’t made up its mind). This is the guy I have always felt has been supportive and understanding, even if he’s a little eccentric. When he told me the effects of menopause would be temporary for me, I said, well, hopefully (there’s at least a 20% chance it won’t be). He scoffed and said, great attitude! And proceeded to tell me to not let menopause happen. Just make sure it doesn’t, he said.
Huh? Have they been holding out on me? Can I push a “no menopause” button? If so, can I trade it for a “no cancer” button? Is that the “cure” everyone’s been talking about? I am totally behind that one. I would buy all the pink crap and wear all the ribbons and go on a thousand walks and even talk about strength and hope and love and whatever if I could have a do-over. I can’t though, that’s the thing. So the next step for me is to scan or not to scan. And to this day I’ve never had to answer such a tough question.
Did I do any of these things this summer? Did my kids? I didn’t, not for the most part, as I always seemed to be recovering from surgery or having side effects of chemo or something that kept me apart from the world. We did go on vacation in the early summer, so that was good. Otherwise, I had my first grilled food of the season this past Sunday and I put on a bathing suit the other day to sit in our back yard, just to remember how it felt. Gabe did many of the above things with the kids, or with Lenny at least, but not nearly as much as in a normal year. The loss of this summer makes me wish that it was possible for one of us to be home more. It’s not, of course, unless someone wins the lottery at our house, and it’s hard to win when you don’t play the game.
The summer is only the tip of the icerberg. I’m starting to really worry that the kids resent me, or have just lost too much due to my cancer diagnosis, but they’re too young to really tell us what’s going on. I have become very concerned about Augie. He seems to have lost the few words he ever spoke, and his aggression is getting worse. He is very cuddly and loves people and he’s mostly happy. I’ve just been devastated with worry about him having autism or some other issue, but I know he also might just be reacting to how things are at home. I am going to have him evaluated, regardless.
Lenny is still acting out as well, though she’s gotten a little better. She doesn’t sleep right before or after I have chemo, and she still defies me and throws tantrums, which she never did before two months ago. And I wonder, am I that bad? Have I screwed things up so royally at home? You’d think you’d get a free pass from parental guilt with cancer but it is horrible thinking about what it’s doing to the kids. It’s worse to realize that we might never know how they would be different if they hadn’t had to deal with this.
I thought I’d been better this past week. Taxol has not been fun, and I felt very weak on Saturday in particular. I got the bone pain for sure (more on that later) and it felt like having a really bad flu, with aches in literally every bone in my body (I’m talking toes and fingers too). The day after chemo, I was depressed to find that all of my fingernails were killing me. It felt like I had the bristles of a hairbrush under each and every one. I thought that didn’t bode well for me keeping my nails. I cut them very short, and so far they are still there. They haven’t even started splitting, though they started hurting again today. I’ve heard that putting black nail polish on your nails can help protect them, but that seems either like an old wives tale or an excuse to rock black nail polish at work. Regardless, I now have 5 different black nail polishes, so I can start a new fashion trend: bald goth, anyone?
Anyway, food hasn’t been staying with me so well, but I’ve enjoyed eating it. Most of the time, I don’t feel sick. I’m tired every day, but I think that’s just the cumulative effect of chemo. Maybe my body was convinced it was done, and then I went back and did more of this. But on the whole I have been able to be a more normal mom, a more functional person. The weather has finally changed and it’s been beautiful, cool even. I made muffins with Lenny over the weekend. We went to a lake in the south suburbs and walked around with the kids. I ate at the dinner table. I did a little laundry. This might not seem exciting, but these were things I hadn’t done in a while. We even went to a minor league baseball game last week. But my relative normalcy doesn't seem to have fooled my kids, not at all.
That minor league game was the first time that I wore my hair outside of the house. I wore it to the lake too. It was cold-ish on both days and I didn’t want to be bald, and I also didn’t want to deal with the impact of being around a bunch of kids who didn’t know me and getting the questions. Wearing my own hair, with a scarf or a hat, was a truly strange experience both times. I looked so normal—just like myself. People treated me that way, guys looked at me, women commented on the red-headed family. I could reach up and play with my hair just like I used to do. Did anyone notice when I started crying? It happened several times. It just made me so sad. I used to be this person, and now I’m not. It’s not just about hair, it’s about the illusion of normalcy. I know that is so important to many women undergoing cancer treatment, but it’s the pretend-normal that is really rough for me. I’d rather just have it out there. I’d rather be the bald, obvious cancer lady, than be reminded of how I used to be and how people used to interact with my family.
It’s been a rough week emotionally. I have had no desire to write here at all. Maybe it’s chemo bringing me down, or hormones, or the rough times with the kids. When we were heading off to the lake, Lenny said “I wish I was at school and I didn’t have to spend time with the family.” Now, I did what any parent of a 4 year old would do in that situation. I told her that wasn’t nice and that I know she didn’t mean it, and that we would have fun. And then I left the room and cried. Maybe my daughter hates me, or maybe she loves me too much. Either way, I was thinking, what if this is the last time we get to do this? Why can’t we enjoy it? I can’t say that to her, of course, and it’s too much pressure to expect her to understand what’s going on in my head, but my god it’s hard.
Because this bone pain is scaring the shit out of me. Not because of taxol—that bone pain I can deal with, and it’s expected. What worries me is something different. Off and on for the last several months my spine has been hurting. I asked the surgeon about it back in June and she said it was highly unlikely that is was anything. She didn’t think I needed a bone scan, though I could have one if I wanted it. It seemed to get better so I stopped worrying; they say the pain from bone cancer never alleviates. I asked about it again when I felt it while I was on a/c, and the chemo nurse said that would be due to neulasta. Now Taxol is supposed to be to blame.
All I can think is, what if not? Breast cancer is most likely to metastasize to the bone, and the spine and hips are the most likely places. It’s unlikely to have “mets” when you’re stage one, perhaps unlikely for anything to grow during chemo. However, if that is what it was, that would be it for me. I would be stage 4, doing cancer treatment for the rest of my short life. They have “made great strides” treating bone cancer that has metastasized from the breast. They now give you up to 2 to 3 years to live.
Two to three years. That’s what I’ve been thinking about this week. Not getting to see Augie go to kindergarten. Not reaching 40. Writing letters to my kids so that they would remember me. Hoping Gabe marries someone else so everyone wouldn’t be stuck thinking about me all the time.
It sounds morbid because it is, I guess. And if I was just being a hypochondriac or having some kind of bizarre depressive episode, that would be different. It’s hard to be a hypochondriac when you’re my age and have cancer. Only 5% of women with breast cancer are under 40. I am one of them. Why couldn’t I be one of the 5-10% of women with no lymph node involvement who see their cancer spread elsewhere? I know I should just get the bone scan. I haven’t done it because the very thought terrifies me. It’s one thing to do what I’ve had to do with breast cancer. I just can’t imagine facing those test results and getting the answer I got from the breast biopsy. With this, there would be no going back to normal ever, and not much time to be abnormal.
The only thing keeping me going through chemo right now is the notion that things will start to feel more normal in a few months, that I have the possibility of a normal life when this is done. Is it selfish to say I don’t want to give that up too? I understand now where denial comes from, and I can see it now as a source of strength if you can really get into it. If I can stretch my denial from just not doing the scan to actually convincing myself that my bones are fine, that would be such a relief!
I thought about not writing this blog at all, because I know no one wants to read this—including me. I know I’m not supposed to have these thoughts, that I should be positive, and that it does put a real burden on people who care about me to hear me say these things. But maybe I just need to keep it real for myself, at least. That is probably selfish too, I realize. There's just so much pressure to feel things it's hard for me to feel; I need a place to acknowledge everything else, I guess.
I was talking to my ob/gyne last week about my menopause issue (my body still hasn’t made up its mind). This is the guy I have always felt has been supportive and understanding, even if he’s a little eccentric. When he told me the effects of menopause would be temporary for me, I said, well, hopefully (there’s at least a 20% chance it won’t be). He scoffed and said, great attitude! And proceeded to tell me to not let menopause happen. Just make sure it doesn’t, he said.
Huh? Have they been holding out on me? Can I push a “no menopause” button? If so, can I trade it for a “no cancer” button? Is that the “cure” everyone’s been talking about? I am totally behind that one. I would buy all the pink crap and wear all the ribbons and go on a thousand walks and even talk about strength and hope and love and whatever if I could have a do-over. I can’t though, that’s the thing. So the next step for me is to scan or not to scan. And to this day I’ve never had to answer such a tough question.
Tuesday, August 10, 2010
Day 97
It's interesting for me to read back on old blogs and see what kinds of things I was worried about with chemo. Some of it seems so quaint! Worrying about losing my memory, my sexual function, gaining weight. I have finished three cycles of a/c, and have one to go. Some things have gotten better with time--my nausea and appetite were much better this cycle, and while I got down to 111, I have gained back to about 114 and I think some of my weight issues are due to muscle loss anyway. I have been sleeping ok except for the few nights after chemo, even though I get up several times a night.
But this weakness and fatigue is just knocking me on my ass. It's so hard to hear about what a strong person I am to go through this, because it reminds me that I should be stronger than this. I should be the one who goes through chemo relatively unscathed. I'm the girl with biceps, the one who can do more situps than my skinny husband. I'm the one who was a few weeks away from giving birth, and I was in the gym three times a week, walking an hour every day AND doing water aerobics. I was as big as a house and every time I took a sip of water I could hear myself sloshing from all the fluid I carried around. But I was up and at em a week after Augie was born, feeling great. I was exercising after two surgeries. But now, ever since Sunday, I have been feeling like a shaky little weakling. I've tried to take walks every day because that's supposed to help combat fatigue, but it's so damn hot that I couldn't do it today. I have gone to the gym only sporadically and I'm avoiding the pool due to germs. So I feel like a sloth--my muscles seem to be atrophying on a daily basis, I'm dizzy, and I'm dropping things. It's making me a little crazy.
Today I went to a little local Catholic hospital to check out their radiation department. I had heard good things about the head breast oncologist there, and this place is very close to my house, which is good since you have to go in every day for 6 1/2 weeks. The short story is that I liked it, the doctor seemed good, and I will probably end up doing that once it's time. The longer story is that while I was there they took my vitals and I got a raised eyebrow from the nurse when she took my blood pressure. Um, is your blood pressure always this low? Huh? What is it?
98/60.
Holy shit. No wonder I feel like I'm going to pass out. I frantically called my chemo nurse who said that she thinks I'm probably just dehydrated. I have been drinking a lot of water and gatorade, but it is very dry in our non-central-air-conditioned house, so maybe that's a factor. I'm staying somewhere else tonight, away from my family, so that the stale a/c isn't blowing straight on my head. I had to take the day off, since I can't pretend to be productive. And tomorrow I will go to acupuncture, so maybe that will help. But I can't help but worry that my heart is giving out, due to the adriamycin. I've learned enough to know that I need to ask about the effects of radiation on my heart since my tumors were in the left breast, and a small bit of my heart will be exposed to radiation. I wish someone had told me that when I was making my chemo decision. Just think, I might make it through all this and then have a heart attack when I'm 45!
I know that sounds morbid, but cancer does that to a person. Physical weakness begets emotional weakness, especially when you're young and independent and used to being able to juggle a million things, like me. There is farther to fall when you're at the height of good health and it gets stripped away. So you do things like read the obituaries. I always liked the big stories in the obits, but now I read the little ones. It's not just out of curiosity for the interesting things people do with their lives. I end up thinking things like, well if I died from cancer at 60, that wouldn't be SO bad. Or, wow, I've already lived longer than that person. Or, I wonder if I will have any grandkids? How long will I be married?
Now don't get me wrong. I am not some morbidly depressed person all of a sudden. I have been exercising, as I said, and working, and doing what I can with the kids, and seeing friends and family. I am not a recluse. I actually think this obituary stuff, and the mind wandering to the unthinkable, is a totally normal reaction to having something like cancer--but again, you're not supposed to admit it. When you're having a conversation with your friends about some dumb movie and in the back of your mind you're planning your memorial service, you're never supposed to say that out loud.
To me, that two-track mind is just the mental version of the way that cancer physically represents itself. On the one hand, it's obvious that I have cancer, because, well--I'm bald. And I have scars on my breast and under my arm. Of course, few people see those (except for everyone who is reading this blog). But everything else that's going on--my weight struggle (which is very minor, considering), my blood pressure, weakness, insomnia, nausea and vomiting, hemorrhoids, photosensitivity, lack of sweat and tears, headaches, etc.--no one knows those things are there. That's the part of cancer/chemo that you just experience by yourself. As far as anyone else knows, I could be making these things up. (Apparently, someone has done that. A co-survivor posted a story on facebook about a woman who faked breast cancer, down to shaving her head and eyebrows, to get money out of some local families and charities.)
How about if I give fake-cancer lady just a few days of this "gift" to get a few days of her normal but for whatever reason unfulfilled life? Because outside of cancer, or more accurately chemo, I have a pretty fulfilling life thank you! I would rather not have the attention. I would happily give this whole damn thing back. It is so hard to feel like this when I felt so healthy just a little over a month ago. Chemo just cuts to the quick--I've almost forgotten about the issues that worried me before I started, because now I'm just focused on things like: can I see/focus enough to write this blog? Should I climb the stairs? Why can't I hear? What can I bear to eat?
And finally, how can I be a normal mom? Lenny in particular has really been having issues lately. She's been having meltdowns, trouble sleeping, waking up crying. She's making up symptoms--saying her stomach hurts, or her head hurts, and then forgetting about it. Now she's 4, so she's not like the fake breast cancer lady. But it's frustrating to me. I want to say "you're healthy! it's no fun being sick! stop pretending!" And yet I know she doesn't know why she's doing what she's doing. I know she's scared, and she's always talking about when I had hair. It's hard for me to comprehend how things have changed for her when I'm so focused on the changes I'm dealing with in my body.
So I guess this is just my place to vent about how we're pretty overwhelmed at our house. We're keeping it together, and I know that people have much harder situations than mine--some people do this as single parents, children have cancer, some people have no support. On the other hand this is my blog so I can only really talk about what I'm dealing with, even though I can recognize my comparative advantages.
For example, Augie is not just a handful, he is about 10 handfuls. He's a very happy kid, but he's busy, and rough, and he eats and poops constantly and can't communicate yet, which makes it hard. I will admit that I do a lot more with Lenny than I do with him, and maybe someday he will resent me for it. Lenny is freaking out right now, and I try to talk to her about it, but she just denies that she's worried. Or maybe she doesn't even know she is. I wish she was more oblivious, like some other 4 year olds. She knows exactly what's going on, and yet I don't think she knows how to process it. I am at a loss as to what to tell her, and I'm also at a loss as to how I try to have a regular mom relationship with my 14 month old when I am at risk of dropping him if I pick him up.
So instead of actually figuring it out, we look at pictures. See here? Look how happy you are! Look, daddy loves mommy's bald head. And finally, wait, don't look at that one, that one's for me, but that's what breast cancer looks like. No makeup, no hair, no clothes. And yet--it doesn't look so bad, does it? Like one day I might look back and say, that does look like me, stripped of some of the conventional adornments. This did really happen--it's not some sort of cosmic joke!
Monday, July 26, 2010
Day 82: Food blog
So once again I think I spoke too soon in the last blog. I said that this chemo round was easier. In a way, it's true--I have been sleeping, so that is a huge improvement. But this time I feel like it hit me like a truck, starting on Saturday. I was so shaky and weak that I was having trouble feeding Augie his lunch. Yesterday I was so tired I fell asleep around 10 am and couldn't get out of bed until after noon, even though I was technically awake.
I haven't been a total recluse. We had a bunch of company on Saturday, including friends whom I haven't seen since months b.c. (before cancer). Kudos to them for not even flinching at my baldness. I went to a kids' birthday party yesterday, and I did wear a wig in order to appease Lenny. I hadn't put one on since last Tuesday, and it felt hot and annoying to me. Today when I walked her to school I just wore a scarf. It's hard to balance the desire to make things easier for my child with the need to make things easier for myself. She wants me to be normal, to look normal, but the thing is, right now I'm not. It can be tiring to pretend. So it's possible that I spent a hell of a lot of money on wigs for nothing, but I need to know that blending in is possible, if I need it, I guess. And I've still got the stubble, so I can rock this edgy look a little while longer and strangers could believe I did it on purpose.
So I have left the house, and I have continued to take walks and try to get some exercise. But damn. Chemo #2 is kicking my ass. I think a lot of this fatigue for me has to do with my problems eating. I am just never hungry. Food--one of my favorite things in life!--has just lost its appeal. I know I need to eat to maintain strength and build up my immunity, but man, is it hard. My mouth and throat are so dry, I have terrible heartburn, I am definitely constipated this time, I feel nauseous and my stomach hurts. Just a few weeks ago I was that girl who was already thinking about lunch at 9:30 in the morning. I would have dreams about Sunday breakfasts. I loved to bake, right? Now I can't even be on the same floor as my family when they're microwaving lasagna for dinner because the smell makes me want to vomit. If I drink water, I feel so full I want to lie down. It's pathetic.
So food has kind of taken over my life here. What should I eat? When? How can I drink all of this water when that fills me up and then I don't want to eat anything? If I choose to eat rather than drink, how can I avoid being dehydrated? When will this metallic taste in my mouth go away?
Why the hell am I doing chemo again?
My consumption patterns are laughable. Last night all I wanted was some frosted flakes. Now I don't even normally LIKE frosted flakes. Who knows why I wanted that. But I knew that wasn't the best nutrition for me, so what did I eat first? A bowl of fresh spinach. Spinach and frosted flakes for dinner. Why not? I eat pudding and ice cream for calories, but I'm sure that doesn't help the constipation problem.
I will be astounded if anyone actually wants to read this blog, but I'm putting it out there because it's worth saying how fast chemo takes over your body. It hasn't even been three weeks and I feel like a totally different person--a sick person. When I had cancer in my body I could still do everything normally. Now the cancer's out and I'm getting this "just in case" medicine and I can barely sit here to write.
During chemo, there was a little party going on in my room last week. In addition to a social worker (who actually was useful as she brought some age-appropriate activity books for Lenny to explore her feelings about my cancer), two dieticians came to visit me. They were concerned that I'd lost almost 5 pounds in a week and were trying to tell me that my diet was ok (fruit, cereal, hummus, rice, peanut butter) but that I need more calories. Apparently it's bad to lose weight on chemo. Well, maybe once this menopause kicks in I'll start gaining! Hell if I know.
They were less worried about me when they found out I had diarrhea--so that's why you lost weight! Well, what's my excuse now? I was depressed to see myself weighing 112 this morning, after eating breakfast. It's funny--I thought it was great to see how the numbers on the scale went down after Augie was born. Even after I had stopped trying to lose weight, it was kind of fun to see myself down to 118, a weight I hadn't been since a teenager probably. I stayed at that weight for months, including after my diagnosis--except for the first few weeks when I dropped a couple of pounds due to the extreme stress of thinking I would die. I gained it back, and started out chemo at that weight. Skinny, but I felt fine. However, this is too much. I mean, I'm going to be 35 years old! I have two kids! I'm not short! I need to get a little more meat on me somehow, especially now that I'm bald--I really will start looking like a boy. Feel free to disagree with me on that if you've seen me lately, but I'm sure feeling that way. When I was a kid and I went through an extreme tomboy phase, I tried so hard to look like a boy, and it didn't really work. Enter chemo! Sigh.
Plus, even if I look like a boy, I need to get through chemo, right? I need to have some energy and stay out of the hospital. I hate feeling like I can't be a decent mom, a normal wife, a reliable co-worker. I'm afraid I'll drop Augie since I'm so shaky. I can't eat dinner with my family half the time due to my smell-aversions. I'm working from home today because I didn't know if I would make it to the train. Affection between me and Gabe consists of a few kisses and maybe spooning for 10 minutes. It's hard to have prolonged conversations.
And worst of all I've turned into such a complainer! I don't like reading back on this litany of chemo complaints, but it's better than keeping them all in my head I suppose. This is the one time when the words "strength" and "courage" mean anything to me. I'm not alone in feeling that those words are meaningless when you have a cancer diagnosis. You aren't given lots of choices, so your pluck is kind of irrelevant. As I've said before, attitude isn't what saves people, because if it was, a lot of amazing people would still be around who aren't.
However, it never occurred to me what strength and maybe stubbornness are involved in actually going through cancer treatment. If I actually show up for the rest of my a/c treatments, that's courage. Or stupidity, or something. Because it is damn hard to make yourself do that. And then, I will need to start a whole new type of chemo, with a whole host of different side effects, once I'm done. And THEN I'll do radiation. I just keep thinking: 85% chance of no recurrence due to successful surgery. Chemo only brings it up 10%, radiation 4% or something. All together it puts me close to normal, but I have to lose so much normal to get there, that the only way to do it is to just close your mind to the reality of what you're doing to yourself and just go. Because someone told you that was your only option. Because you want to live more badly than you want to live well. And for me, because once 2010 is over, I will have the chance to probably live like a normal person, albeit with fear, and some lingering side effects, and the memory of the things that cancer took from me. It is amazing to me to think about the people who go through this knowing their cancer will not go away, who do this for palliative reasons. That is some strength I don't think I have. If I do, I would really, really, rather never find out.
I haven't been a total recluse. We had a bunch of company on Saturday, including friends whom I haven't seen since months b.c. (before cancer). Kudos to them for not even flinching at my baldness. I went to a kids' birthday party yesterday, and I did wear a wig in order to appease Lenny. I hadn't put one on since last Tuesday, and it felt hot and annoying to me. Today when I walked her to school I just wore a scarf. It's hard to balance the desire to make things easier for my child with the need to make things easier for myself. She wants me to be normal, to look normal, but the thing is, right now I'm not. It can be tiring to pretend. So it's possible that I spent a hell of a lot of money on wigs for nothing, but I need to know that blending in is possible, if I need it, I guess. And I've still got the stubble, so I can rock this edgy look a little while longer and strangers could believe I did it on purpose.
So I have left the house, and I have continued to take walks and try to get some exercise. But damn. Chemo #2 is kicking my ass. I think a lot of this fatigue for me has to do with my problems eating. I am just never hungry. Food--one of my favorite things in life!--has just lost its appeal. I know I need to eat to maintain strength and build up my immunity, but man, is it hard. My mouth and throat are so dry, I have terrible heartburn, I am definitely constipated this time, I feel nauseous and my stomach hurts. Just a few weeks ago I was that girl who was already thinking about lunch at 9:30 in the morning. I would have dreams about Sunday breakfasts. I loved to bake, right? Now I can't even be on the same floor as my family when they're microwaving lasagna for dinner because the smell makes me want to vomit. If I drink water, I feel so full I want to lie down. It's pathetic.
So food has kind of taken over my life here. What should I eat? When? How can I drink all of this water when that fills me up and then I don't want to eat anything? If I choose to eat rather than drink, how can I avoid being dehydrated? When will this metallic taste in my mouth go away?
Why the hell am I doing chemo again?
My consumption patterns are laughable. Last night all I wanted was some frosted flakes. Now I don't even normally LIKE frosted flakes. Who knows why I wanted that. But I knew that wasn't the best nutrition for me, so what did I eat first? A bowl of fresh spinach. Spinach and frosted flakes for dinner. Why not? I eat pudding and ice cream for calories, but I'm sure that doesn't help the constipation problem.
I will be astounded if anyone actually wants to read this blog, but I'm putting it out there because it's worth saying how fast chemo takes over your body. It hasn't even been three weeks and I feel like a totally different person--a sick person. When I had cancer in my body I could still do everything normally. Now the cancer's out and I'm getting this "just in case" medicine and I can barely sit here to write.
During chemo, there was a little party going on in my room last week. In addition to a social worker (who actually was useful as she brought some age-appropriate activity books for Lenny to explore her feelings about my cancer), two dieticians came to visit me. They were concerned that I'd lost almost 5 pounds in a week and were trying to tell me that my diet was ok (fruit, cereal, hummus, rice, peanut butter) but that I need more calories. Apparently it's bad to lose weight on chemo. Well, maybe once this menopause kicks in I'll start gaining! Hell if I know.
They were less worried about me when they found out I had diarrhea--so that's why you lost weight! Well, what's my excuse now? I was depressed to see myself weighing 112 this morning, after eating breakfast. It's funny--I thought it was great to see how the numbers on the scale went down after Augie was born. Even after I had stopped trying to lose weight, it was kind of fun to see myself down to 118, a weight I hadn't been since a teenager probably. I stayed at that weight for months, including after my diagnosis--except for the first few weeks when I dropped a couple of pounds due to the extreme stress of thinking I would die. I gained it back, and started out chemo at that weight. Skinny, but I felt fine. However, this is too much. I mean, I'm going to be 35 years old! I have two kids! I'm not short! I need to get a little more meat on me somehow, especially now that I'm bald--I really will start looking like a boy. Feel free to disagree with me on that if you've seen me lately, but I'm sure feeling that way. When I was a kid and I went through an extreme tomboy phase, I tried so hard to look like a boy, and it didn't really work. Enter chemo! Sigh.
Plus, even if I look like a boy, I need to get through chemo, right? I need to have some energy and stay out of the hospital. I hate feeling like I can't be a decent mom, a normal wife, a reliable co-worker. I'm afraid I'll drop Augie since I'm so shaky. I can't eat dinner with my family half the time due to my smell-aversions. I'm working from home today because I didn't know if I would make it to the train. Affection between me and Gabe consists of a few kisses and maybe spooning for 10 minutes. It's hard to have prolonged conversations.
And worst of all I've turned into such a complainer! I don't like reading back on this litany of chemo complaints, but it's better than keeping them all in my head I suppose. This is the one time when the words "strength" and "courage" mean anything to me. I'm not alone in feeling that those words are meaningless when you have a cancer diagnosis. You aren't given lots of choices, so your pluck is kind of irrelevant. As I've said before, attitude isn't what saves people, because if it was, a lot of amazing people would still be around who aren't.
However, it never occurred to me what strength and maybe stubbornness are involved in actually going through cancer treatment. If I actually show up for the rest of my a/c treatments, that's courage. Or stupidity, or something. Because it is damn hard to make yourself do that. And then, I will need to start a whole new type of chemo, with a whole host of different side effects, once I'm done. And THEN I'll do radiation. I just keep thinking: 85% chance of no recurrence due to successful surgery. Chemo only brings it up 10%, radiation 4% or something. All together it puts me close to normal, but I have to lose so much normal to get there, that the only way to do it is to just close your mind to the reality of what you're doing to yourself and just go. Because someone told you that was your only option. Because you want to live more badly than you want to live well. And for me, because once 2010 is over, I will have the chance to probably live like a normal person, albeit with fear, and some lingering side effects, and the memory of the things that cancer took from me. It is amazing to me to think about the people who go through this knowing their cancer will not go away, who do this for palliative reasons. That is some strength I don't think I have. If I do, I would really, really, rather never find out.
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