Sunday, May 30, 2010
Yesterday was my son's first birthday. We celebrated with just ourselves and my mom in the beautiful north woods of Wisconsin. I made a cake, and he actually ate some of it--not sure that was a good idea, but at least the entire piece didn't end up on the floor. It's been a perfect weekend, weather-wise: in the eighties, sunny, breezy. We've gone to the beach on little Bear Lake 4 times and only had to share with anyone else once. We've gone out in the paddle boat, taken walks, taught Lenny how to hit a baseball that's not on a tee, eaten some good food and opened presents. I had to stop the car in the middle of the road and wait for a black bear to pass. Lenny watched as a big snapping turtle laid eggs in the grass in front of the house. Gabe just geeked out trying to get a video of the huge pheasant that flew into a tree right before us. We've seen loons, geese, deer, rabbits, chipmunks, enormous crayfish--and Lenny is finally old enough to get how interesting these things are. Yesterday, a bald eagle flew directly above my head and started circling while I was out on one of my solitary walks. I've never been so close to an eagle, and I know how big their wings are, but I wasn't really prepared for what that looked like up close.
Augie has started cruising around, after not seeming interested in crawling much at all. He's standing by himself, going crazy, sneaking himself into corners and under tables and any other place he shouldn't go, staying up all hours of the night just to play (remember when you offered to babysit? who wants an overnighter?), floating in his inner tube in the beach. I'm so happy to see him do all these things, and so wistful too. I know he'll never remember this birthday. Assuming I kick this thing, maybe it's a blessing. Who wants to remember his mom turning away at intervals with tears in her eyes on his first birthday? But since I am a mom, I worry about that thing I'm not supposed to mention. What if he doesn't remember me at all? And how many birthdays will I see?
It's been a wonderful weekend. I'm glad we did it, but there's this weird sense with everything, like cancer means you should feel grateful just for the fact of the earth. Should I enjoy this weekend more because I have cancer? If so, why? Because I might not see many more like it? Or because it's better than going to work right before all the bad stuff begins?You know, I've always loved these times up here, and I was looking forward to Augie's first birthday long before I knew I had breast cancer. He is probably my last kid, cancer or no, and I've known that for a while. I've always been pretty content with my lot, and appreciative of the good things I've got going on--cancer doesn't change that, it just brings this tinge of the macabre to the occasion.
It's not clear to me why there's this urge to live it up after you learn such a thing as I've learned. I don't think that wisdom and serenity come over you just weeks after a diagnosis. We have such a fascination with this question as a society. What would you do if you found out you had X amount of time to live? But it is very rare for any doctor to tell any patient what that prognosis is. That doesn't stop Hollywood and the New York Times bestseller list from focusing on these end-of-life blow-outs and existential questions about what to focus on, what the priorities ought to be.
And yet when I worry about the things that are to come, people say "just be glad you found it early" or "be glad for what you have." Well, yes. Clearly. I just don't think that cancer patients should have such low expectations that we should just be happy to be here. A month ago, I felt the best I ever have, I looked good, I had tons of energy. Wait--all those things are still true. Except for the cancer. I know there's a lot to get through, just physically, in the next year. I will probably be so focused on that that this blog will sit stagnant for long periods of time. I might not even be able to type after the surgery on Friday, since they're doing the sentinel node biopsy and that could do a number on my ability to move my arm. But I am going to really grill that oncologist on June 14 (Gabe gets to spend his 35th birthday with me finding out my chemo and radiation schedules) to try to ensure that whatever I have to do, it lessens the long-term effects that chemo could have on me. I might not be able to do much about it at all. But if they're trying to help me live a normal life span, they need to realize that I am only 34, so that would be a long time. I want to enjoy life as long as I'm living it.
I realize now that's why I've been so focused on and scared of chemo. It's as if I've already moved past the surgery, which is unwise since it could be much worse than I expect. I am also just ignoring that part about finding out whether it's spread to my lymph nodes, because I can't do anything about that and I have to do chemo regardless. The surgery will be temporary pain, even if it's bad, even if temporary lasts a while. I know. I've done that sort of thing before. But I am also all too aware of the long-term effects medication can have on a person. And this is some serious, kill your cells medicine. I don't want neuropathy, or liver damage, sexual dysfunction or uncontrolled weight gain. For some of these things, being a woman is a definite negative. Doctors assume that when you talk about things like not wanting to gain weight or wanting a normal sex life, you are worried about your husband or partner, especially if he happens to be young. Sorry, honey, but no. I'm not worried about you or whether you're attracted to me. I'm worried about myself, and how those things will affect ME. Cancer card again--self centerdness! Medical community--listen up. If I say I'm concerned about something, don't tell me it's temporary, it will grow back, I will be beautiful anyway, my husband will understand. Just answer the damn question--I have my reasons for asking.
Can I put a plug in here for something people could do, especially those who are far away? Most of the followers of this blog, here and on facebook, are of a certain age where you all remember making mix tapes. I still have many of the tapes people made for me in high school and college. How about some mix cds for me to listen to while I'm in chemo? From what I understand from talking to other triple negative women, I'm looking at probably 16-20 chemo sessions over 5-6 months. I would get a kick out of hearing some good tunes from good friends during that long, long time.
Other than that, there's not much more to report on the cancer front yet. I'm still scared shitless, still not sleeping well, but I don't cry too much anymore. I can't believe I'm going to start the real cancer fight in just a few days. But in some ways, it's not soon enough. So the question is, what would you do if you found out you had cancer? Well, you would work, and go on vacation, argue with people, watch tv, go swimming, write a blog, talk about depressing things, laugh, take pictures, watch the days tick by as your kids get a little older, and hope that bald eagle was trying to tell you something.
Oh wait--that's what I would do. I would encourage you not to try to answer that question about what you would do, because it's kind of stupid. Even the trivial parts of life are your life, and are worth paying attention to--it's all going to change anyway so why speed up the process trying to squeeze something else out? Augie seems to have it figured out. Just stay up all day, so you don't miss anything good.
Wednesday, May 26, 2010
Wow, thanks everyone for all of the well wishes that I've received here, on facebook, via email, the phone, etc. I am extremely relieved about the BRCA result, and I understand why they say the waiting is the hardest part. At least now I have the first phase of a plan, and I don't have to wait extra time to schedule a more complicated surgery. The surgeon yesterday told me that my tumors (we're going with two these days) feel the same size to her and that it's probably the biopsy that is making them hurt and the weaning that has made them seem obvious. So, no bad news to report there.
Except the cancer part. That's still there.
I know breast cancer can be one of the most curable cancers, but it's the "invasive" in invasive ductal carcinoma that is keeping me up every night. I thought I would sleep better last night, but I'm averaging about 2-3 hours I'd say, mostly on the couch. My couch has always been good to me for sleep. I'm not afraid of surgery, but I am very nervous about waiting until at least June 10 to know if this thing has spread. And it's chemo that's really making my already busy mind go into overdrive. People say not to think about it or to worry about things you can't control, but that is quite honestly just completely impossible.
I had a dream the other night that I was cooking Thanksgiving dinner. My dreams are very real these days--no weird dream-like aspects at all. OK, my dreams have always been like that and sometimes I wonder if I am just such a literal person that my subconscious state is like other people's conscious state. But that's a question for another day. In my Thanksgiving dream, I was in my own kitchen, cooking the dishes I always cook for Thanksgiving, and my kids were my kids at their normal ages and it was even cold and gray outside. But then I woke up with a start. No, this has to be a dream, I thought. This isn't real. This Thanksgiving, I'll be bald. And I probably won't be able to cook. And then I couldn't get back to sleep.
I'm sure this bald issue is getting old, but I think I would be able to deal with it easier if other people could do it for me. A number of people have literally grieved when I told them I would lose my hair. How do I deal with that? I remember in high school that I had a desire to be invisible, because I had that long curly red hair and people would come up to me and ask me about it, touch it even. Men, old ladies, everyone. I ditched class once when we had a sub and was the only kid who got caught. The teacher said, "do you think I would forget you?" And yet, I never would have cut it. I liked it as much as anyone else. But I have never been so conscious of it as I am now. Every compliment I receive is like a stab in the back. And that's not because I don't know how to take a compliment, but because that is what people ALWAYS mention--I can't remember the last time that someone other than Gabe spontaneously complimented me about anything else. In college we had an orientation exercise wherein we had to say something nice about each person in this group of people we had just met. Every single person complimented my hair, except for one guy who told me I had good posture. I don't remember a single other person who was in that orientation exercise, but I still remember that guy's name and can picture him perfectly in my mind. All because he didn't mention my hair.
I don't think it's vanity--it's just this ingrained sense that my hair is what people see about me, and when I lose it they won't see me at all. Or worse, they'll see me as a cancer patient. I mean, yesterday the breast surgeon's nurse looked at me and said "I'm sorry but you have the most beautiful hair." Seriously? And what do you mean, you're sorry? You know I'm going to do chemo and that I'm going to lose it. That was the time for a different type of compliment, like "great shoes" or something else I can control. I was taught that you shouldn't give compliments based on people's personal appearance, because that's just DNA and they can't do anything about it. Style, that's a different story. Now with this whole tirade, don't think I'm fishing for compliments--I would just rather be invisible right now, and this is my blog so I'm complaining about it.
When I responded to the nurse "I know, and now I'm going to lose it," she gave me the obligatory "but it will grow back" and then she started on this long tale of how different women are, how it's harder for some women to lose their hair than their breasts, how 80 year olds who should avoid radiation get lumpectomies anyway and young women opt for double mastectomies when they aren't medically necessary. She said, we're all so different, and everyone needs different things. Now don't get me wrong. I actually really like this lady. She has answered all of my questions and called me back when I've called about strange things and she is very nice. But I was thinking, does it matter that we are different? These doctors seem to want to know what I want. A lumpectomy? Mastectomy? Um, I want to go back to May 2, when I didn't know I had something foreign in my body that could kill me. The rest of these choices aren't really doing it for me.
I hope that by the time Lenny is an adult, they have something resembling actual recommendations for women with breast cancer, based on age, stage, size of tumor, etc. Recommend something to me and I can decide what to do. Now, that is mostly what has happened for me, and I am grateful for the excellent care I have and will receive at Northwestern. I was told I was a good candidate for a lumpectomy and that I don't need a mastectomy. I was told that I have to do chemo and that if I do a lumpectomy I will need radiation. I was told that anti-cancer drugs won't work for me. Of course, I could refuse to do any of these things, but that doesn't seem like the best plan for a young mom with a bunch of blog followers. But with other medical issues I've had--with the exception of pregnancy--these "choices" weren't on the table. Diseased gallbladder? Remove it. Epilepsy? Take medication for it and avoid activities that might induce seizures. Pelvis broken in multiple places with massive internal injuries? Lie in bed until you can move again. None of these directives changed the fact that this thing was happening, but at least the removal of choice from the equation made me feel like something had happened to me and I needed to deal with it, rather than that my choices would dictate the result. My choice would have been working guts, normal electrical impulses in the brain, walking on my own.
I know that's the opposite of what makes most people feel better--control is supposed to help. For me, that has always meant control over my environment, not control over the actual medical decision. I will cut my hair before chemo does it for me. I will try to continue to work and exercise and have sex and take care of my kids and watch stupid action movies. But I have felt overwhelmed in part because of all of the things I need to decide. Pregnancy was like that for me the first time. Genetic testing? Amnio? Diet, exercise plan, breastfeeding decisions. If you go online when you're pregnant you are asking for a lot of disturbing advice and stories that you compare to your experience. The second time, though, I just ignored most of it. I really wanted to have a second kid, and I didn't want to waste what I knew even then was probably my last time being pregnant worrying about shit. With this cancer, it's hard for me not to ask other women about their experiences, but it's also hard to digest that information when I know that none of it might apply to me. Maybe in a few years I will be ready to intellectualize some of this breast cancer experience, but right now I just need to know what's going on with me, lest I get too wrapped up in the overwhelming aspect of things.
In all honesty I have also felt overwhelmed because in my weaker moments I feel like I have given enough with this body, that I've made enough sacrifices and learned enough lessons. I know many people have it worse, but when I allow myself to think about the next year, and the years of fear after that, it makes me so tired. I am feeling less tired now that I know a little more about what I'm facing and I've even started to think I might be around in 20 years to read back on this blog with some measure of embarrassment. On that note, if my hair ever gets long enough again, I promise Gabe to wear pigtails more often. It doesn't seem so embarrassing now.
Tuesday, May 25, 2010
Sunday, May 23, 2010
So in the midst of my internal drama I managed to do all this stuff at work and take care of the kids and still feel kind of like I was living someone else's life. The conference happened, it was a success, and I managed to do a little bit of small talk, but not too much. They usually rely on me to do the non-economics talking, but I just couldn't get too deep into conversations about sports or other people's kids with my mind wandering back to the BRCA test or whatever all the time. And when little snafus happened, I had to admit that I wasn't worried in the least. Conference on the one hand, breast cancer on the other. Trump card, anyone? Cancer does give you that--I was able to ditch my own conference reception, using the logic that "due to an overwhelming case of CANCER I will be unable to attend."
Plus, I managed to catch Augie's cold, so I kind of sound like a dragon lady with this laryngitis, and talking would have been difficult regardless. The hardest thing about the conference was that last year, it happened two weeks before Augie was born, so I was as big as a house and waddling around. A bunch of people who saw me this year were telling me how great I looked (mostly men) or how pretty my hair looked (women). I really wanted to slug everyone who said something like that to me, but of course they have no clue, and that's my problem, not theirs.
Can you tell I haven't gotten over this part about not wanting to be bald? I just hate waiting and pretending to live a normal life while I know that soon I will be getting some prognosis handed to me, and then I will go through some horrible treatments that will make me look like a boy, an old lady, whatever. It's the public nature of cancer that's tough. You can't hide it like you could something else. If I suddenly show up at work with no hair, or with a scarf on or a wig, people are still going to know. And that's fine, but then you deal with the pity and the fear and everything. People cry around you and you wonder, am I the walking dead? Because right now I don't feel like it. I have a cold, but otherwise things are working pretty damn well.
I'm still mad about that--about taking a healthy body (except the cancer part) and putting it through hell, some of it temporary, some of it not, just to keep living. If you get hit by a car, that's immediate--the effects are right now, and I think that's easier to deal with somehow. This just creeps up on you. That's apparently especially true with breast cancer if you're nursing. Now that I'm no longer engorged, this tumor (I guess I do have two, plus a cyst) seems huge and feels like a jagged marble. It hurts all the time. It's like I was walking around and then WHAM. Cancer--big and obvious, and I and my husband must have been morons not to see it. There's no way anyone would have told me it was a clogged duct or anything but cancer if it felt like this. So of course I'm convinced it's much bigger, spreading, etc., but I'm being told it just feels different because the milk is gone. I wonder if I've had this the whole year I was nursing, or even when I was pregnant, but I couldn't feel it. Then it doesn't seem like I caught it so early. They still tell me I'm "lucky" I found it, but I think what they're really trying to say is what my ob told me straight out: "I think you saved your own life."
It's hard to be proud of that one. I shouldn't be doing that at age 34. I shouldn't have to be angry every time someone tells me a story about a 5 or 10 year cancer survivor. In 5 years, I'll be 39. My kids will be 9 and 6. In 10 years, I'll be 44, and my kids will be 14 and 11. Sorry, but that isn't good enough or long enough.
I'm going in to see my surgeon on Tuesday just so she can hopefully tell me I'm nuts and the tumors are the same size. They might be sick of me calling all the time, but I don't care. It's as if they diagnosed me, did a few tests, and said, yes, it's cancer, see you in a month. Now, that's not really how it's been, but this past 3 weeks has been infinitely longer than even the last month of pregnancy, or the first month in a wheelchair, or anything else I've experienced. I'm having very literal dreams about getting my BRCA test back and having a double mastectomy, and because I know how sad that will make me if I have to do it, I just need to KNOW. Damn this company with their patent and their $4,000 test and 2 week wait time. Women shouldn't have to go through that.
On that note, this whole experience makes me think a lot about the things in women's health that doctors don't know or even pretend to know. It seems like a huge number of women 45 and under who get breast cancer recently had babies, miscarriages, were nursing, just went off the pill, etc. And yet it's not related, they say. Then why did you ask me 7 questions about the pill in that questionnaire? And it's the way they talk about "choice" that kills me. If you have testicular cancer, they don't just say, ok, let's take them both, even if it's only in the one. With other cancers you don't seem to make as many decisions--they tell you what to do. It's as if people think you want to keep your breasts because they're breasts, and you're vain. Or that you could get rid of them because you don't need them. Well, you don't need your testicles, or your feet or arms to live either. I want to hang on to them because they're a part of my body and if they're not broken, I don't want to fix them. I'll do the stupid double mastectomy if I'm BRCA positive but I will not be happy about it. I just wish there wasn't this idea of "well, you could still do it even if it's not necessary" to make you second guess yourself all the time.
I mean, I don't think I would have done anything differently in my life if I had known I would get breast cancer. But I'm suddenly learning that there are risk factors that most women don't know about. You can't control many of them--like getting your period before you're 12, as I did. Or having your first baby after 30. I was 30 when Lenny was born, and almost 12 when I got my period, so does that put me on the breast cancer fence? But, if having my kids had anything to do with it, I would have done it anyway, and I am glad I got the chance before I found out. Also, I don't feel bad about being on the pill for 11 years. But I do wish they had a clue what was going on, because so many young women have this disease, and youth is not in your favor with cancer. Your body is not lazy, and neither is the cancer.
And neither am I, even though I've been a little bit more of a hermit. I've seen a lot of people this week, and have even been kind of social. If you see me, I will probably be talking about cancer quite a lot, but I'm finally capable of talking about other things. I still have my moments. I started crying at Lenny's second dance recital, wondering how many I'll get to see. I've done weird things, like let people who aren't my husband take topless pictures of me. I start staring off into space and get quiet, and I can't remember what we were talking about. But I'm out there. I might want to crawl into a hole when I'm bald and have a chemo port and I'm weak and in the middle of the nightmare, but maybe you all can come get me and bring me out so this summer and fall will seem a little brighter. Sound good?
Tuesday, May 18, 2010
When I say I was going to have a heart attack, I'm serious. I went to my internist yesterday because my heart's been beating so fast and I've been so out of breath that I was CONVINCED I had lung cancer. They did an EKG on me, tested me to see if I have a blood clot. Nothing. The doctor said it could be due to anxiety.
These past two weeks have been the worst I've ever spent. Every woman I've talked to who has had breast cancer says that the time between diagnosis and surgery is the worst. Once you have surgery, or treatments to go through, you have to focus on that and you have less time to think. I still have a lot of waiting to do--waiting to find out the results of the BRCA test, waiting to find out if it's spread to my lymph nodes at surgery, etc. And I've been thinking about the negative things that can happen with chemo--not the suffering during treatments, but the long-lasting effects. Besides the fact that I have to do it regardless, I have learned from some women that not everyone has horrible chemo side effects. I mean, besides the hair loss, menopause, fatigue and everything. As they say, it's doable.
I have to admit that one thing that really bothers me about the timing of this cancer is that I have felt so good. I'm happy with my weight, my body is working well, I've been exercising a lot, and for the first time EVER in my life, since I was 11 years old, I am getting my period on a normal, regular 28 day cycle. And now I have to give all of that up, and everyone just says I should be happy to be alive.
Are you content with just the breathing part of life? Probably not, and people with cancer are no different. There's a lot else that matters too. If it were 30 years from now, maybe I'd feel differently. But for now it pisses me off that my body is for the most part healthy, has worked well with cancer for apparently several years, and now I have to poison myself with drugs that come with skull and crossbones warnings and flashing red lights, to the point of killing some of the good stuff in my body, just to stay alive. And I should be grateful, or feel lucky.
I know that's not the "I have cancer but so what I'm going to beat this monster!" attitude that many people want cancer patients to have. But really, rather than use our strength, bravery, stubbornness, or whatever we have going for us to beat cancer, we really just wish that we could use those traits to not have the damn disease in the first place. I mean, I learned that lesson about not taking life for granted a long time ago, when I was a kid. Now I have kids, and I have a new mission--to see them grow up.
What no one likes to admit is that no amount of wanting something badly enough makes it come true. If that were the case, no parents with small children would die from cancer or anything else. You can fight, and you should, because there's nothing else to do, but you can lose. For every Lance Armstrong there's a Walter Payton. Remember when he got on tv to say he had cancer? I don't think we ever forgave him for crying. It's as if we thought he owed us something different, some different face of humanity. But if anyone should have beat that thing, based on physical fitness, positive attitude, money, resources, general likability--it was him. Let's not take it away from him by talking about strength--he had that. Christopher Reeve had that--he was Superman. But shit happens, and it happens to people who don't deserve it.
I'm not being defeatist, I'm just saying--it was bad luck that gave me this disease, and it will be good luck (and modern medicine) that gets me out of it. And of course I have all of you, which is really a necessity for anyone trying to get through something like this, as I need all the help I can get. The other things that people have been so kind to remind me about myself, which seem a little lost now--my stubbornness, intelligence, strength, humor, whatever it is that you think I have-- will help me deal with some of this in the meantime, while luck plays itself out.
I guess some of that helped me the other day, when I told Lenny that I have cancer. She had been having some issues--refusing to go to gymnastics, not sleeping well, acting out. She must have wondered why the phone was ringing so much when we usually don't talk to people much, why I was disappearing for long stretches of time on walks, why my mom was showing up to take her to school. So I just decided to tell her at the dinner table. Have you been wondering why so many people are calling? Yes. Well, I'm sick. Remember when I couldn't pick you up because I had an owie on my breast? uh-huh. Well, I have cancer. I will have to have an operation, like your dad did when you were two, and I won't be able to pick you up for a little while. Then I will need to take medicine to make me better, but the medicine will make me very tired and my hair will fall out and I will look like your little brother did when he was a baldy newborn baby. Why will you lose your hair? Well, I don't really know, but that's what the medicine does. And no medicine that you take will ever do that to you. You can't catch what I have. A lot of people will be visiting, including your uncle Luke who could take you to get some more piggie and elephant books. So, uncle Luke will be here because you won't be here? No, I will be here, I just might not be able to do all the things I can do now.
That was the gist of it. And she seemed to get it, and she has slept fine since then. Though I am still nervous as hell, it took a lot to tell her that and I'm so glad I did. Don't let anyone tell you that you can't tell a kid it's cancer. That's what it is. That's what I talk about with Gabe and when people are here or on the phone, if I talk at all. It is not like having the flu or a broken leg, and you aren't going to keel over like you might from a heart attack. It's like the thing it is, and it's not the C-word, or a death sentence, or something to brave through, but you do have to suffer first and then hopefully life will look a little bit normal again. I spoke to a very helpful woman who had a triple-diagnosis breast cancer diagnosis 9 years ago (another woman told me that at that time, they told you to write your will if you were triple negative) when her kids were the same age as mine. She said it was a gift, because they don't really know what's going on, and more importantly, they don't care. Bald? Tired? Throwing up? Boring? Who cares? They just want you here.
Saturday, May 15, 2010
By all accounts, we had a wonderful day yesterday. Gabe went in to work for a while and then worked from home, so we took the kids to Brookfield zoo in the afternoon. It was gorgeous--maybe the nicest weather of any zoo visit I've ever had in my life. We got dinner after the zoo and it was bedtime for the kids when we got home. Gabe and I watched the Hangover. The day was just so normal. And that's what got me.
Will I ever be normal again? Here's a problem with the internet. You can google "is life ever the same after cancer?" and get hits like "thereislifeafterbreastcancer.com." Seriously, look it up. It's as if there's no emotion or life experience that hasn't been done before, that others haven't tried to explain. Because that's true. But that doesn't make it feel any different for YOU. All day long I would be enjoying myself, when I would suddenly start reeling from something, like seeing a young couple with a baby. I didn't even want more kids but I would think, that will never be me again, and need to turn away crying. I got sad while clipping coupons because I realized I didn't need the Pantene coupons anymore. I think I'm getting the same cold that Augie and Gabe have had, but every innocuous symptom is turning me into a basketcase as I wonder if I have lung cancer, stomach cancer, bone cancer, shit, full body cancer. I started throwing all of my nursing clothes and bras into a box, angry with myself that I ever saved any maternity clothes. This blog is filled with TMI, so I'll admit that I got my period yesterday, which while normally annoying, just made me think "well what the hell is the point in that?" And in grand irony, my breasts are just killing me, as I am very engorged from weaning. I'm mad that neither I nor Gabe can enjoy them in the last few weeks I have them, you know? A few times yesterday, I started resenting the normal day, because damnit, this isn't normal, I might never be normal, isn't that obvious.
I know I need to take it one day at a time. That's all anyone can do. And for the most part, I have been doing that, but these thoughts keep creeping up on me. I haven't even had surgery, much less treatment, but I'm already thinking about what life will be like after that. I might still be very tired, not my normal self for a long time. Many cancer patients say recovery is much worse than treatment, because they weren't expecting it to be so rough and they thought they could go back to their pre-cancer lives. Now I can hope for me it will be relatively easy, but I can imagine how you finish chemo and radiation and everyone believes, now the old Katy will be back. Hopefully, but what if not? It would be a drag to be around someone so singularly focused, which I have been these last few weeks. Will people begin to wonder when I'll get over it? When will I be the same? It's this unknown that is my second biggest fear, after the initial fear of my cancer having spread.
As an aside, I am just totally unprepared to find that out. I try not to think about it and to assume the best. That's why I've scheduled my lumpectomy, my post-op appointment and my first appointment with the oncologist. Let's just assume everything's good, I'm not BRCA positive and we're doing this lumpectomy. Let's assume I caught it early and I'm stage 2 or less. But every once in a while this fear crashes over me and I feel like I'm drowning in it. I'm not supposed to admit that, am I? That makes me weak, or negative, or at the least a downer.
Back to that subject--I know I shouldn't look at it that way, that I'm bringing people down. I'm just afraid that we're getting all of this support because people feel sorry for me, and it's hard to maintain relationships based on pity. I've been thinking back to the time after I got hit by a car when I was 9. I was out of school for three months, in a wheelchair, and I had to learn how to walk again. Recovery was the main purpose of my life then as well, but I was young, so distracting myself was easier. But I remember how my friends would visit on rare occasions, and how hard it was for them. I felt guilty about that, and also lonely. It was totally understandable--we were kids. If I couldn't play, what would I do with my friends? We weren't "tweens" then the way kids are today. We didn't sit around talking, about boys, or clothes, or whatever. We played. I couldn't do that, so they did the logical thing and waited until I could. I know my friends cared about me, worried about me, missed me. But for that time, I was different, so my friendships were different too. All of my friendships survived that accident, and some of my friends from that time are even following this blog 25 years later. But once I could play again, I seemed the same. This time, I'm not so sure.
When I got in that accident, I was on my way home from school, excited to meet my friend who went to Catholic school (we didn't see each other that often) so we could have a big leaf fight. I think she was mad when she found out that couldn't happen; of course, she didn't understand. For a few weeks after I got out of the hospital I would enviously watch other kids jumping in the leaves. I wistfully admitted to my mom that I wished I could do that. She said "oh, you'll be able to do that next year." And she probably doesn't remember that conversation, but that was one of the biggest epiphanies of my life. Next year. Next year, things will be different!
At 9, you have no concept of the future. I just accepted that yesterday I could walk, today I cannot. I am not a walking person anymore. The idea that the future would be different, that life would not always be as it is today, was a marvel. I felt so overwhelmed by happiness that I can still remember what it felt like all these years later. I went through some tough times after that, had night terrors, etc., but the next year I met up with my same Catholic school friend and there are these wonderful polaroids of us having the best leaf fight of all time. And I still kick the leaves in the fall.
This time I worry that the future will be different, but not in that good way. It's harder to have an epiphany like that when you're a more cynical adult. And most of my friendships are based on talking, laughing, etc. and for now I am not very good at talking about anything besides myself and this disease. I try, but then I get lost in my thoughts. Gabe suggested I write this blog today, so I can get out some of the negative stuff. He thinks my blogs have been more positive than I'm really feeling. That might be true. But since I've been avoiding people, all anyone knows about me right now comes from this blog, so I don't want it to be completely depressing. I'm usually a pretty even-tempered person. I get annoyed easily, but I don't take myself that seriously. And this is some serious shit.
So what to do? I think I need to get back into the world, start answering the phone. I can't make any promises, but if you all start calling, you might actually hear my voice. Don't take it personally if I'm not up for talking right that minute. As they say, it's not you, it's me. And it is still me, right? Somewhere in there.
Friday, May 14, 2010
I'm nervous about waiting for the chest xray results. I had that done yesterday, along with my pre-op blood tests (assuming I can do the lumpectomy on June 4) and my gene test. I have to wait at least two weeks to get that back, and until then I'm going to go a little crazy. I really want to avoid that double mastectomy if I can, even though so many people seem to think that's the way to go. The other reason the gene test is so nerve-wracking is that it has implications for everyone who is a blood relative to me if I'm positive, including my kids, parents, brother, etc. Kind of a pandora's box. But if I'm negative that will make the surgery decision I've already made a lot easier to live with. One thing that helped was that the genetic counselor told me that many women who test positive don't even do extra surgery, they just get mammograms twice a year. Breast cancer grows slowly, so the idea is it would be found early. I will have to have mammograms all the time for the rest of my life anyway (as will Lenny, once she's 25, since she's related to me), but I don't think I would take that chance if I was BRCA positive.
I've been working, doing water aerobics, actually speaking to some people (not really on the phone yet though) and generally re-emerging into the world over the last few days. I hate all this waiting and find myself having cancer-envy. It seems like there are people who have lived through cancer all over the place, but there's something about breast cancer that involves way more waiting and wondering than other cancer types. If I am able to have the lumpectomy, it will be exactly one month after I was diagnosed. Doctors at Northwestern tell me that I'm lucky to get in so early! So what do you do, torture women for months, making them pretend to go about their normal lives? You have to wait another month or something after surgery to start chemo, do that for months, then hurry up and wait some more to start radiation. I've been told all women who find out they have breast cancer wish they could fast forward a year and look back and say, wow, I got through that. Well, one of the reasons they wish that is that the whole process takes so damn long.
I continue to appreciate everything that people are offering to do for us, and all of your good karma, emails, calls, and favors really do help, even while I still physically feel like myself. Emotionally I feel like someone else altogether, but it is getting a little better every day. I think I'm done with the intense grieving phase for now and I've entered into that acceptance stage. I'm still scared shitless, especially until I know what type of operation I need to have and whether my cancer has spread (I don't really find out my stage until a week AFTER surgery--more waiting). But I'm managing to do some things normally. I've been more honest with people recently and have been at equal intervals cranky and deep; I guess having cancer gives you some kind of get out of jail free card, for a while anyway. I guess that makes up a little bit for getting the bum end of the chance card, right?
Wednesday, May 12, 2010
I'm feeling a little bit of blog pressure right now, as people are probably waiting to hear what happened yesterday! I had no energy to write last night. I thought that I would feel much better after yesterday's appointment, but it turns out I was wrong. Not because anything particularly bad happened, but because that feeling of "ok now I've got a plan and let's get moving!" did not hit me. I still feel like a too-young person with a horrible disease just waiting to find out if it's worse than what I know now.
I met first with the intern/resident, whatever they're called, and then the surgeon. She is the head of breast cancer surgery at Northwestern and will be very good but was also fairly businesslike. I wanted her to tell me whether or not to get a lumpectomy or mastectomy, and the bottom line is it's up to me. Ugh. I was informed that due to my age and family history of breast cancer (my grandma) I should get tested for the BRCA gene, and if I'm positive, I will have a double mastectomy. They'll also want to take my ovaries at some point. I really can't wrap my mind around that. How much are you going to take from me here? I guess I should focus on all that I will have left. I have nice legs, right? Sigh. Also, what's up with the fact that one company has a patent on this test and can charge $3800 for it and make you wait two weeks for the result, when Walgreens is coming out with some $20 version this week? This doesn't make a lot of sense to me. Either the test is simple and cheap or it's not--which is it, pharmaceutical community? You should beware lying to women with breast cancer. They might get a little testy.
Other news--I have triple negative breast cancer, a cancer they don't know much about that is not caused by hormones, and therefore I won't be able to take drugs like tamoxifen after my treatments. That also means that I will need chemo, regardless of what type of surgery I do. And I will lose my hair. This is really bothering me--more than I even expected. If anyone knows of a place that will turn my own hair into a wig, I think I will do that--cut it off myself and get a jumpstart on the process.
The triple negative thing seems worrisome since it's a more aggressive type of cancer and some studies say things like "women who are unfortunate enough to have this diagnosis have a worse prognosis." Seriously, who is the asshole who wrote that in a medical journal? On the other hand, chemo is more effective on my cancer than others, and after three years, if I'm cancer free, my prognosis is actually better than other types. But it's been hard to wait a week, much less three friggin YEARS to find things out.
Tomorrow I'll get some blood tests, a chest xray and that gene test, but nothing else. That kind of worries me--no bone scan or CT scan, but I guess they know what they're doing. And if I'm negative on the BRCA, I'll have my lumpectomy on June 4 and probably start chemo in the beginning of July. Once that is over I'll start radiation. So this is going to be a long road, and I'm going to be calling on all of those who have offered help--beware!
I met with the plastic surgeon after the regular surgeon yesterday. Besides having to wait an hour and a half for him, I'm glad I did that. He was a really nice guy and changed my negative opinion of plastic surgeons. He showed me the three kinds of reconstruction they could do if I have to have a double mastectomy. I could do the tummy tuck version, which sounds nice--they take fat from your stomach and make boobs out of it. Who doesn't want a flat stomach and bigger boobs with no exercise required? Well, it turns out that I don't! Man did that look like a nightmare. He told me there are much better candidates than me for that (meaning, people with more fat) and that he wouldn't recommend that for someone with small kids because the recovery is 2-3 months. Um, no thanks. Or, they can take fat and skin from your back. Also not appealing.
He said I'm the perfect candidate for the skin expander and silicone implant surgery because I have smaller breasts that haven't sagged. This was supposed to make me feel better, but it just makes me sad about what I might lose. Anyway, at the time of the mastectomy they put expanders in your chest to create an area to put the implants in. After about a YEAR, you are at the point where you decide whether to put fake nipples on or have tattoos put on. Both Gabe and I think that's unnecessary--they look a little weird and really serve no purpose. I mean, all of these fake boobs look nothing like the real thing. They are there to make you look better in your clothes and to make you feel more normal. Anyone who sees you naked is going to do a little bit of a double take I would think. Good thing I'm married! It just sucks to know that no matter what a good job they do, the reconstructions look kind of alien.
It was hard to see all of that, but it helped me decide to do the lumpectomy. I want to save myself that drama if I can. It does mean that if my cancer comes back on the left side, I will be unable to do the silicone implant later after a mastectomy because of effects of radiation and I would have to either have nothing or one of the tougher surgeries. But I will have to wait more than 2 weeks to know the results of the gene test so I'm still in limbo regardless. In surgery, they will also do a sentinel lymph node biopsy to see if cancer has spread to the nodes. So I have to wait until then to get staged. I want to know NOW. I was told it's possible I could be stage one if the tumors are really close together and there's no spreading, but it's probably stage 2 at least. I just can't imagine waking up from this surgery to find that out. That process is terrifying to me. The surgery itself? Whatever--I've had surgery before, it's just pain. I can deal with pain. Bad news and long-term illness is a tougher thing.
I did make one other big decision yesterday. I decided against any fertility treatment. They could freeze my eggs, but that is a dramatic process too, so in the course of a week we've decided to cap our family. One of the hardest things for me is to think about chemo giving me menopause. It is often temporary but can be permanent. And with it goes the usual stuff besides not having your period-- weight gain, hot flashes, changes in sexual function, etc. Of course, some people have none of those side effects with natural menopause or chemo-induced menopause, but how old am I supposed to feel here? I'm not even 35. I can't have more kids, I'm going to be bald, I'm going to go through body changes that aren't supposed to happen for decades.
I know I'm supposed to be positive right now, but that's depressing to me. It was really hard being in the treatment area of the breast cancer center yesterday. I was the youngest person there by 20 years, and everyone--the other bald patients included--looked at me with such sympathy and pity. It was awful. Like, oh honey, you're so young, I'm so sorry. Yeah, well me too. It reminds me of how people looked at me when I was in a wheelchair as a kid. As in "You look normal--what's that about?" My mom says I used to get those looks as a little kid getting blood work for epilepsy too. Yesterday, even the intern guy seemed very upset the one time I started to cry. Gabe decided that was because I'm the youngest most attractive person he's seen there. Now, he's biased, and I'm not saying I agree with that at all, but there is this sense of it being depressing even for the doctors to treat a 34 year old with little kids. It's just not supposed to happen.
But it does happen, and apparently I've had cancer for a long time. They told me that anyone with a 1 cm. tumor (apparently I have 2 of them, not three--one is just a cyst) has had cancer for 3-5 years. And that's with the fast-moving kind like mine. For many people by the time it's palpable it's been there 8-10 years. Part of me thinks well damnit I wish I'd found this years ago! I have breast exams at the doctor's office all the time--I just had one in February or March. How is it all of a sudden obvious? Because I've lost weight so it's easier to find? Or did it mushroom out of nowhere? But then I tell myself that if I had found this earlier, I wouldn't have had my kids, so I guess it was worth it not to find it until now. I have had two pregnancies, delivered healthy babies, pumped milk or nursed both of them--probably all while having cancer. At least they haven't been any the worse for it.
But I'm kind of the worse for it--especially in my mind this last week. Last night I finally came out of the woodwork a bit. I went for a drink with a few friends from the neighborhood while waiting for Lenny to do her dress rehearsal for her dance recital this weekend (note the picture). Want to know about irony? The special was a "ta ta tini"-- a martini to support breast cancer programs at Little Company of Mary Hospital. Needless to say that's what we ordered. I drank about a quarter of mine, and spent the whole time talking about cancer. But no one cried, including me, and it was good to not feel like a total recluse. After I took Lenny home I went out for dinner with an old friend. She got a little teary once but everyone has kept it together for me, which I appreciate. Maybe a day will come when I can talk small talk again. Aren't I that weird girl who likes to talk about sports and old shows on channel 66 like Specterman? Don't I like to talk about nerdy financial subjects? Um, I don't know--maybe I will be that person again in a little while. But not this week.
This blog is more of an update than the emotional ones from last week, and re-reading it, it seems much more boring to me--like a typical blog about something going on in someone's life that is kind of self-important. I'm feeling a little numb now--I woke up last night at 3 AM crying and I think some of the deep-ness came out then and I don't have energy for it today. I'm not apologizing, but I'm hoping that I can tap into some of my other reserves--writing, creativity, humor--once I get past some of this clinical bullshit, you know?
In the meantime, I'll just look at the face of this little dancing girl, and at my son who is finally pulling up and wrecking havoc all over the house, and tell myself that I'll be around to see what kind of people they turn out to be.
Sunday, May 9, 2010
This is definitely not the mothers day I was expecting. We spent the morning at the breast cancer walk in Beverly with 10,000 other people and I found myself wondering how many of these women were like me. I’m glad we went, but it was yet another surreal experience for me to cap off the week. I still look completely normal so I felt a little invisible in a strange way. But maybe that’s good-- I don’t want to be one of these “honored” women, you know? In memory of, in honor of, all those women on those signs would like that to be someone else. Well, that’s not true—they’d like it to be nobody else. Anyhow mothers day has been as good as it could be in light of the circumstances—beautiful sun, homemade cards from Lenny, and Gabe remembered to get me a bunch of presents. But I forgot to get my mom anything for mothers day this year, and it doesn’t seem too special to get out of all the childcare and domestic duties for a day when I’ve been ignoring those things for days now.
I can’t wait until this visit with the surgeon on Tuesday morning. I feel like I’m losing my mind. I’ve lost more weight, hopefully because it’s hard to eat and I’ve been taking two walks every day rather than the alternative reason. I have a 15 page questionnaire I need to fill out before the surgeon’s visit and they ask you these questions about whether you sleep adequately, have stomach problems, have an appetite. I’m assuming they mean BEFORE you were diagnosed with cancer? Because until that appointment happens, I am just crawling out of my skin. I can’t sit still and I want to distract myself all the time.
See, I don’t think I’m reacting to this the way you’re “supposed” to react. I don’t feel a business-like “let’s take care of this,” nor a “bring on the fight!” attitude coming on anytime soon. I’m not in denial, because that’s been taken out of the equation. Every moment of every day I’m aware of this cancer. I go about my day and do some normal things, but I get weepy and terrified at various intervals. Other women who’ve gone through this say it’s hard to breathe. I can breathe all right, but it hurts. It’s like I can feel everything happening in my body, every twinge is amplified, and I’m aware of things like walking, breathing, swallowing.
So is this normal? I would say not—cancer is, by definition, not normal. Abnormal cells, abnormal life, at least for a while. But as I said before, the world keeps spinning. Last night my mom babysat so Gabe and I could go out. We went to my friend’s wedding, which I had planned on going to by myself because we couldn’t find a sitter. But I couldn’t handle going alone. The thing that gave me the courage to go (I haven’t been around many people at all since last Tuesday) was that due to my current 115 pounds, I could fit into this skintight black dress. Where the hell else am I going to wear that? So we went to the wedding ceremony, and I told Gabe I didn’t want to stay for the reception because I didn’t want to have to talk to people.
I don’t think I’ve ever cried at a wedding before this one. It’s not because weddings aren’t sentimental, or that I’m not thrilled for people, but just because I don’t cry. I cried for a few minutes at my own wedding when my brother read the poem he wrote for us, and that was a surprise. Gabe cried the entire time, basically start to finish. Anyway last night was so hard for me. The only other person I knew at the wedding survived a different type of cancer 8 years ago, and she sat next to me and it was great to see her looking so great. And I was happy for the couple and the ceremony was beautiful, and yet I kept having these thoughts like “I’ve only been married 5 ½ years!” or “don’t say till death do us part” and all this other morbid shit. I think you’re not supposed to admit to having those thoughts. People tell you not to, to cut it out. But come on. There’s no way around it until you know what you’re dealing with.
Afterwards we got some middle eastern food, and I think I picked the perfect restaurant. It was very casual, and there we were in our wedding clothes, but no one else was there. So when I started crying in the middle of the chicken shwarma and Gabe had to come across the table to console me, there was no one there to notice. After that, we went to see Iron Man. You would think this would be a perfect mindless distraction, and for someone who loves mindless action movies, it was—for the most part. But you know how when you’re pregnant, every show on TV is about horrible things happening to pregnant women or babies? Here I am at Iron Man, staring at the screen through all the scenes where he talks about the poison in his body, his worries about celebrating his last birthday, or relying on science to save his life. For the first time since last Tuesday I really started to think about this enemy in my body, this alien I have refused to touch or let anyone else touch. But it IS me, it’s my body turning on me, and how does that happen? Where’s that new element to fix me? On the other hand, I was feeling good that my dress was just as tight as Scarlett Johannsen’s and while I don’t have that figure, I was pulling it off for a change. Not that I’d wear mine to WORK, but still. Besides, for a while anyway, I’m still a natural redhead (can someone explain to me why Gwyneth Paltrow starts off the movie as a redhead and then turns blonde as soon as Scarlett’s redhead character comes on the scene?).
I’ve talked to a few other breast cancer survivors this weekend, and that ‘s been a mixed bag. I think what’s helpful for me is the practical advice: don’t listen to people who tell you that losing your hair is no big deal, get chemo on a Thursday so you feel better by Monday, do radiation closer to home if you have a choice, and, interestingly—don’t talk about it if you don’t feel the need. I just don’t know if I’m going to be a support group person. I remember a woman I knew who went to group therapy for years due to an armed robbery (she wasn’t hurt). OK, I’ve been the victim of armed robbery twice, once at gunpoint, once from a bunch of kids with bats while I was with my 7 month old daughter. The second one was much scarier since my kid was involved. But we were fine, so therapy? No thanks. I think therapy and support groups are great, if they can help you move on with something rather than stay with it. Sometimes my biggest fear is that I will stay caught up in this thing, thinking about it all the time. I like talking to people who have survived cancer when I have some other reason to like those people, you know? It’s like making friends with people who have kids that are your kids’ age. It makes sense, and you have that in common and you can talk about it. But god help me if I try to be friends with all kinds of parents of babies and preschoolers. I’m a cranky old lady on the inside, remember.
Stoicism is underrated. People talk about strength, courage, etc., with breast cancer. But what the hell are you supposed to do? You’re not going to keel over right now, so you have to do what needs to be done. Is that bravery though, or just realism? Remember Heath Ledger’s character in Brokeback Mountain? As an aside, did anyone actually read that story before the movie came out? It’s one of the only depressing-ass Annie Proulx stories I like. It is hardly about the cowboys’ relationship at all. It’s really about isolation—the isolated landscape, the inability for Ennis not just to admit he’s gay (in the story I felt like that was the least of his issues) but really to talk to anybody. And yet that’s what I liked about him. Ah, to live in a society where we could just keep shit to ourselves and not talk about ourselves all the time. And yet what am I doing? Writing this damn blog. I get as sick of myself as I get of other people.
On that note, one of the things that has helped distract me is to pay attention to how different people react to this news of mine, and what that tells me not about their relationships to me but about people in general. It’s easy on a day to day basis to feel that your closest friends are by definition your oldest ones, or the people you see the most often, or the people you can talk to most easily. But in a situation like this, closeness is almost irrelevant. What matters is how different people can do different things and fill in the painful gaps you can’t deal with yourself.
For example, until Friday I had not talked to anyone on the phone except my doctors, mom, brother, and oddly enough my ex-boyfriend whom I haven’t seen in two years. I spent the first five minutes on the phone with him convincing him this wasn’t a scare—I’m not going to find out this is a cyst, this is the real deal. Holy shit, right? But it was great to talk to him, after all this time. He said some things to me and wrote some things to me that remind me of an older, maybe more basic version of myself that I forget about with all this motherhood stuff. But I hadn’t been able to talk to anyone else.
So on Friday I was home by myself with the kids, off of work. I was home “working,” on Wednesday but the kids weren’t with me and I had a million phone calls to make to doctors, my HR department, my boss, etc. If I broke down sobbing there was no one to see me. My mom came over in the afternoon, so I was only alone for a while. I felt better on Thursday. Then it all came crashing down on me.
Lenny was playing in her room all morning and Augie took a nice 2 hour nap. But I was just breaking down all the time and I couldn’t stand the thought of Lenny seeing me like that. She could probably deal, but I didn’t I didn’t want to have to make her feel better about my reaction. Is that selfish? I called Gabe and asked him if he thought it would be horrible for me to see if our neighbors were home so I could dump Lenny over there and lose my shit for a while. I didn’t want to make that phone call. He told me to do it. So I did, and I realized I didn’t know how to have this conversation. We’ve been friends with these people for years but this situation is kind of outside the scope of conversations we’d have. He said “so how are you guys doing!” and I thought, huh, does he not know? I asked him and he said he did but couldn’t talk to me about it. Honesty! I appreciated that. So I just asked him straight out—I know you’re busy and you have all these people coming over but I am losing it and I don’t want Lenny around me so can I bring her over? Uh sure, bring her right over. No problem.
I got the baby in the stroller and headed over there. I realized on the way over I forgot to feed Lenny lunch, and I didn’t even care. How’s that for a good mom? So I dropped her off and there were these kids there she didn’t know. She was sobbing. I handed the baby to my neighbor, picked Lenny up, couldn’t figure out what to do. He’s looking around like what the hell is happening here, and I realized, this situation is so crazy and awkward and I’m asking a lot. My daughter is miserable, she’s hungry and she’s the only girl, this leaves my neighbor with 4 kids to watch, but you know what? I had to do it. I left, gave my cell phone number, walked out the door and started sobbing as soon as I got to the sidewalk. At that point I knew I made the right decision, but it was hard for me. When I picked Lenny up my girlfriend was there, nervously talking about normal things the whole time while I sat there in a daze, and I realized again how hard this is for people. But I also realized that I could phone in that favor and people would do what they could do, and that would mean different things. And at some point I’ll need it all.
I’m writing about this situation because it was the first time since I found out I had cancer that I asked—in person—for help from someone outside of my family. I had emailed my other neighbors and asked for help taking Lenny to school for a few days and emailed back and forth with some old friends about getting together soon. But I hadn’t confronted any cracking voices, denial, nervousness, etc. Our next door neighbor did come over to borrow something last week and I told him it was ok to talk to me. But this time on Friday I had to admit to my own breakdown to someone who didn’t know what to say to me. And after making that first call I knew I could ask again. So I called another neighbor, a friend whom I haven’t known that long but who I thought could talk to me without breaking down, and could talk to me about me having cancer. I needed that.
I know that some people are very emotional because they love me, or because that’s just how they are. And it doesn’t mean that people who aren’t emotional don’t love me, it just means they’re different. But I can’t handle emotions right now. So that measured conversation was important to me. And sometime I will need that emotional friend, or the friend I’ve known since I was 7, or that person who will act like they don’t know anything different about me, or someone else.
It makes me realize that we set up a lot of boundaries with people based on what we think friendship is about. Is the person the same age? Gender? Same family situation? Do you have a lot in common? Does he make you laugh? Can you talk to her about your deepest fears? Do you remember the same songs? I mean, does any of that shit really matter? I think the question is, does that person care about you or like you, or did they at one time and they can remember what that was like? And is it really any of your business why that is?
So for those who have or will have ignored me, reached out to me, called me to say you love me, avoided saying you love me because it’s too painful, talked to me about cancer, talked to me about anything but cancer, watched me cry, held me, watched my kids, run errands for me, distracted me—thank you, and I get it. I would never judge people based on their reaction; I have no idea how I would react to such unexpected news. But I would do something, which is what you have done for me. I really hope I never have to return any of these favors because I hope everyone I care about is happy and healthy all the time. But you know I will. In the meantime, Happy Mother’s Day.
Friday, May 7, 2010
When I got to my new home away from home at the Lurie Breast Cancer center, they asked me to participate in a research study. Now science must love me, because the same thing happened when I was delivering Augie. I don't even remember what it was I signed up for--some study of labor outcomes for people who have petocin and an epidural, or something like that. I was in labor and they're asking me these questions. Fine, give me the pen and stop talking to me.
This time, I was selected because I can't have an MRI. Since I'm nursing, I would have to wait 6 months for the test to be accurate. Apparently it's only accurate on non-lactating women for a few specific days of their cycle anyway. This strikes me as a bit of junk science. If the test is almost always inaccurate, surely there must be a better way? Anyway, in addition to my regular ultrasound, I could have some 3-D thing. Would I be interested in being a part of the 1,500 women from the U.S., Germany and Japan to do this? My response: Will I get billed for it? No, no that gets charged to our research department. Sure, why not.
The 3-D thing was interesting. They place an x-ray type of machine on your breast, compress it, and this transponder slides itself across automatically. Very scifi. More uncomfortable than a regular ultrasound, but cool to see the 3-D pictures of the whole boob. My questionairre asked me if I liked that ultrasound more than a regular one or a mammogram. I thought, man if I could be a small part of helping replace mammograms with this thing women the world over would thank me! That test was infinitely better, though I was there for 3 hours, at one point reading an Agatha Christie novel in the dark, lying on my side with gel all over my chest waiting.
My result was good news too. Nothing on the right, nothing additional on the left. I was very relieved, but I'm scared of all the tests I need to get to show if cancer has spread to my lungs, liver, stomach, etc. No one thinks it has, but until I know what I'm dealing with it's hard not to be a little terrified. If I just have breast cancer, I know I can deal with that.
That's not a sentence I ever thought I'd write. But right now I'm panicking with every headache or stomach twinge, wondering if that means more cancer. It's not surprising that my stomach is bugging me since I haven't been eating and I'm a nervous wreck, but still.
It has been very helpful to me the way that people have responded to the news and this blog with so much love and support. It means so much to me. And I know that no one knows what to say, or whether to talk to me about normal things, or at all. I'm sure it will be easier for some people not to see me or talk to me, but what amazes me is the number of people who've offered to come out and help us or see us, even when I haven't seen those people in years. And people at work have been very supportive--there's apparently a group of breast cancer survivors at the Fed, and while I don't know any of them, I will very soon! I've already met another survivor at Gabe's work (he works three blocks away from me and until yesterday I had never been in his office building) and I'll be talking to a few other women who have survived breast cancer this weekend. It makes me feel very loved, and hopeful.
But I'm just not very good at being emotional in front of people, as most of you know, so it's hard too. Because I'm feeling wistful and sad all the time. My gyne seems to think I need to get a better attitude. I think he's surprised that I'm not being super positive. But I don't feel negative--I'm just not a cheerleader type. Just because I'm not shouting "All right, let's take this on!" doesn't mean I haven't accepted what I need to do. Anyway, I know people feel terrible and want to help and maybe just need to hear my voice, and here I am screening calls because I can't deal with talking yet. But soon, I will, and then I will be taking you up on your babysitting offers and I will want to hang out and be social too. After all, at a certain point, I won't be up for that. But now I feel just fine, which makes this whole thing seem surreal, like I could wake up from it. I know I can't though.
I'm starting to get angry about the fact that I will be on drugs for so many years, that I will have long-term consequences of chemo if I need to do that. I'm past the sadness about the inevitable weight gain, hair loss, etc., since that will be temporary. It's the lingering stuff that bugs me--the reduced immunity once they take my lymph nodes, the fact that unless they pass this health care reform I will be on the health insurance blacklist. Also, my gyne was very honest with me yesterday and told me that chemo would probably destroy my ovarian function. Between that and the drugs, I wouldn't be able to have kids for five years, and even then, the hormonal changes of pregnancy and the stimulation to my breasts (which could be, tragically, what gave me this cancer in the first place) would put me at risk again. Now Gabe and I didn't want to have more kids, but we hadn't made that decision permanantly yet. And now cancer made the decision for us. I don't want to have a kid at 40, so I guess we're going to stick with the two. They are definitely enough, but it makes me feel kind of old to realize my fertility is over.
I need to remind myself that if I hadn't found that lump, I wouldn't know I had breast cancer, and I'd be going out on girls nights, working out, trying to find a babysitter, talking to Gabe about when he should get a vasectomy, etc. Gabe said that while he knew I was upset that we'd lost all our babysitters for various reasons recently, I didn't need to get cancer to get some. But you know we're going to need to go out and do some fun things, and it's also hard for us to talk around Lenny, who seems to be about 80 years old in her knowledge of things.
We haven't told her anything, except that I have an owie on my breast and that's why I couldn't pick up her or Augie for a few days. Nothing since then. Of course, my mom doesn't usually stay with us, and Gabe and I don't usually leave the house early in the morning to go to a "meeting" together. She broke down when she was at gymnastics and I couldn't figure out why, until I realized that my mom was there, and I had been talking about my mom taking her for a while and she was worried. Then last night out of the blue she asked, "So why do you have an owie on your breast?" Well, I just do. But I can lift things now, it's healed. She said "So what's the deal with Augie's eating?" Yes, she did say "what's the deal." I've been trying to figure out how to wean him without becoming engorged or feeling too sad about it, but I haven't said anything to her. Gabe said she'll figure it out on Sunday when we're all on the breast cancer walk in Beverly (we signed up before we knew about me...irony...). I'd like to think she's not quite that perceptive, not yet.
Speaking of weaning, that process has begun. The only thing I've read online about breast cancer has to do with nursing, because I just want to avoid the pitfalls of reading online. So many women are militant about continuing nursing, but everyone in the medical community is telling me to wean as soon as possible. And the reality for me is somewhere in between. I absolutely want to be done nursing by the time I have surgery. How the hell would I deal with that? I might only have one breast, and I'll be laid up for a while. That just isn't going to happen. But I don't want to have too much pain or hormonal fluctuation by stopping too fast, and I'm already sad about one of my breasts being a harbinger of suffering, so I want to continue for a little while longer. Augie actually prefers the left side, so there's one person who doesn't care about the cancer. I've put the pump away, and I'm going to nurse maybe three times a day this weekend, then move to two by Sunday or Monday, then move to one. I wanted to give him at least one year, but shit happens I guess. It's more about me than him anyway. He'd rather just stuff puffs and wagon wheels in his mouth anyway.
This blog is also more about me--I will confess to doing it because it's just too hard to tell people one at a time or update people who are concerned with my progress. So that's my motivation, but in the end I feel better for doing it too. I'm starting to realize that for a while this will be the focus of everything for me, but that someday it won't be, and I'll be one of those people that other women call when they get that bad news and need to feel a little better. Until then, I'll be one of those annoying bloggers. Feel free to tell me when I'm full of it, okay?