Tuesday, June 29, 2010

Day 55

I have so much going through my mind right now that I debated against writing a blog at all. On the other hand, if the point of the blog is to get some of this stuff out of my head and into the ether, I guess this is a good time to do it. But if you're looking for an update on what's happening with my treatment, that's not this blog. This is blog as therapy time for me.

First of all, today was Augie's 13 month birthday, and he took his first steps. He's been taking some tentative steps over the last few weeks, but this time he made it five and a half before he plopped down on his butt, saw us clapping for him, and got so excited he slapped himself.

I can remember that feeling. Both of them actually--the excitement over small things, and the learning to walk part. Not learning exactly, but walking again after not being able to for several months. It's a cool memory, and a rare one. I'm aware of that. I can also remember one time when I ate a particularly good nectarine. I was probably 19, and it was so good I really couldn't believe it. I had to call someone on the phone, and I couldn't decide if I should just chomp the whole thing down or savor it. Another time in college I was talking to my long distance boyfriend on the phone and I was crying. Me--the person who doesn't cry. Why? Because I was studying something interesting, it was nice outside, and I was happy. That was it.

These are some of the things I was thinking about during my MUGA test today. After some more botched IV attempts (I doubt I'll get through chemo without a port but damnit I'm going to try--I shouldn't have made that junkie comment in the last blog, because I look like one now), I got to lie in the claustrophobic machine while a non-radioactive camera took long, slow pictures of my heart. The machine didn't need radiation, since they had already placed that in my body. At the end of this cancer experience, I should be glowing. Anyway, as I lay there perfectly still I could remember the CT scan I got at 6 years old like it was yesterday. The way I was taken off alone because the doctors didn't listen to my mom, how all of the students were observing me, how heavy the lead blanket was on my body so that it made me nauseous, how they got frustrated with me because I couldn't keep my head still for ten minutes at a time. I've grown up since then. I don't listen to doctors if they tell me something I don't trust. I stand up for myself. I can keep still. But on some level am I the same? I mean, who was that 6 year old, that 9 year old learning to walk, that teenager so thrilled with life? How do those girls compare to 34 year old me?

I'm thinking about this now because really what scares me about chemo is that I will be different on some fundamental level when it's over. Temporarily or permanently, it's still a scary thought. No one wants you to think about this, but I think I owe it to myself to consider it. Take, for example, some of the defining things about me. Some people might disagree with these things or with the idea that they define me. However, I think there are at least three things that chemo either will or might take from me that play a big role in my sense of identity and in the way people interact with me. I've always been the girl with the long pretty red hair, and I've also always been a smart and sexual person.

I'll lose my hair--that's a given. I've talked about that enough. But I think people are unaware of how much that affects my interactions with people. I've gotten things in life because of it. I've been noticed, for better or worse. But because I am smart, the hair thing was never my only thing. I managed to have 100 seizures a day and still be one of the smartest kids in class. I made it through years of anticonvulsants without cognitive impairments. I put myself through grad school and managed to have a career doing nerdy research. And now I really fear this chemo brain phenomenon. It's real, and they should call it something else so it doesn't sound like a joke. People lose their memories, forget your name right after you introduce yourself, become disorganized, begin to write lists for things like "pick the kids up from school," lose chunks of time, forget how to concentrate. If I'm not the person who is super organized, who remembers everything, who can write easily, do 15 thinking tasks at once, read a book a day, then who am I?

That takes me to number three: Am I that fairly sexual person who is at home with her body and doesn't have a lot of self esteem issues with men? Well, maybe not so much in premature menopause, which can be so severe for some women in chemo that they lose the ability to have sex. And if chemo or steroids makes me gain weight, how attractive will I feel then? Shouldn't that be the least of my problems, you ask? Well, no. I worked damn hard to get to be 115 pounds, even if half of that was just nursing. To have it taken from me just because of some medication, or some artificially induced hormonal changes that shouldn't happen for 15 years, that is going to be some tough shit to handle. And I know. I remember when my epilepsy medication made me chubby when I was 8. I had always been a tiny petite little thing. All of a sudden, I felt like someone else. I was never hungry, so it was frustrating to gain weight and not even get to eat. My parents were actually concerned that I had an eating disorder--in third grade. I just hated to have anyone talk to me about food, because I knew that what was happening to me was outside of my control, and it really bothered me that anyone thought I was doing anything on purpose. To lose my hair and potentially my figure and my sexual function as well, that is just too much. I mean, regardless of what anyone says, people will treat a chubby bald Katy much differently than a skinny long-haired Katy. And I will feel different about myself.

Outside of the physical aspects of chemo's side effects, I think a lot about the other things. For most medications, there are some side effects that effect quality of life on a limited basis. But chemo cuts to the quick and affects the basics. The possibilities include losing the ability to: recognize yourself in the mirror, eat, sleep, have sex, feel your feet, grasp objects, and remember your life.

I realize that all of these things might not happen to me. But what bothers me is that I have no control over any of them. I will do the best I can to keep my normal life together, but it's just a big unknown. People will be able to see the hair loss, the weight changes, the skin discoloration. The rest will be going on inside of me, and will affect me even more. What kind of badge do you get for that? I remember right after my car accident while I was still in the hospital, I looked at my hand and there was a bloody dent in one finger where a rock from the street had gotten lodged in my skin. I thought to myself, is that little scar all I will have to show for this? And to this day, it is. You can't see the arthritis, after all. Of course at the time I didn't understand that I would have a very public experience with that accident, since I would be in a wheelchair for months. At nine years old, I just wanted some proof. This bad thing happened to me, and I'm not the same. See this long, jagged scar on my hip? Oh wait--I don't have one. What's changed, physically and emotionally, is on the inside.

Even before chemo starts, that's how I feel about cancer. I'm not the same, but I just fear how much more I'll need to change before this is done. You might ask, shouldn't I be glad that chemo might save my life? I guess I should, but I'm just not there yet. I feel so young and healthy and attractive and smart right now, and this might be the only time in my life when I get to say that without seeming like a conceited bitch. Because I might lose all of those things--starting next week. The anticipation of loss might be in fact worse than the loss itself. What is so hard is that I feel like this is a choice I'm making, and why would I do that to myself? Clearly, I'm doing it, so I guess the answer is I want to live a long life and with this triple negative cancer there's nothing else to help me do that. But a few months ago, or shit, even today, now that this rash from the antibiotic has gone away, I was such a high-functioning person. Now I'm going to purposely put that at risk. At least with the car accident it just happened. Bam--literally. Life is different now. This is just some slow process that makes you crazy until you see where you end up. Chemo to me is like an injustice brought on by good intentions.

Which leads me to more random thoughts. At work we are all focused on this financial reform, and (insert disclaimer about how these views are mine and not those of the Federal Reserve Bank of Chicago or the Federal Reserve system) there are a million aspects of it that interest me. One that is getting me revolves around some of the stuff that is already in the works regarding young people and credit. I was talking with some friends about this the other day and I was having flashbacks to when I did financial literacy work, and we were just hitting on the problem of college kids in debt, maybe 10 years ago. But now I'm thinking about this differently. Everyone wants to protect "kids" under 21 from excessive debt. On the one hand, credit cards don't actually get you into debt unless you buy shit with them. On the other, how many 19 year old kids right now are in college? In this economy, a lot of people that age are going to be working full time, or in the military, or taking care of their kids. They might need a credit card to buy necessities, build credit to get a job or an apartment. This idea of co-signers for young adults who want a credit card assumes a very specific lifestyle. Hell, it assumes you have parents.

Random thought #2: Before I got ready for the MUGA, I was reading Time magazine, since they seemed fresh out of People. I skipped the whole oil spill debacle to read this fascinating story about malaria in Africa--specifically, 7 countries in Africa that account for 2/3 of all malaria in the world. In one city, people are bitten by tens of thousands of mosquitoes a year, including four bites every day that contain malaria. I break out in huge ridiculous hives from any mosquito bite, so I think you would have to kill me in that situation. But it seems that malaria is doing a very effective job with that-- men living naked in the streets due to severe brain damage brought on by malaria in infancy, the huge number of children under five who die, towns that have nothing in them but houses and makeshift hospitals. This has become a cause celebre recently and lots of folks are raising lots of money for mosquito nets. But I just couldn't get over this one aspect of the story that is haunting me. Apparently, they know that they can cut malaria infections in half by spraying houses with insecticide. However, organic cotton farmers have protested this. Now how many babies in Sudan do you think are wearing organic cotton clothes? No, they are sacrificing the lives of thousands of children every year so some U.S. kids can wear "green" clothes made in these countries that are also experiencing horrific civil wars, genocide, you name it. I could feel justified in hating the diamond industry and getting a pearl engagement ring, but in so many ways I also question what is behind some of the "good" consumerism that is the rage today.

Injustice brought on by good intentions.

Why am I writing about these things? Well, a while ago I was doing too much reading about chemo, and I thought to myself, man, I wouldn't even wish this on Pol Pot. Now that is actually what I thought. And then I realized that I'm kind of a strange person, because that's not the first thing that would pop into most people's minds in that situation. This blog today is representative of me, maybe more than the other ones I've written prior. Because every day, I'm thinking about cancer and whether or not I will survive it, and I'm thinking about chemo, and what it will do to me. But I'm also thinking about genocide, and malaria, and financial reform. I think about injustice a lot. Maybe that's a fourth thing that makes me Katy. Maybe not. Regardless, if I lose my memories, or my train of thought due to this poison in a few weeks, I will be able to look back on this and remember the convoluted way my mind used to work. So this one's for me--feel free to still call me up so we can talk about normal things. You might wonder when you read this, but at least for now I can do that too.

Friday, June 25, 2010

Day 51: Clear Margins!

Oh, I can't tell you the relief that I feel. I went out on a limb and called the nurse this afternoon, hoping my pathology was in after 48 hours and that they could tell me something before my post-op appointment next Tuesday so I wouldn’t lose my mind. I am still feeling the effects of the anesthesia in a big way--very shaky, heart racing still, don't feel like myself. So after I left that voicemail I watched Crazy Heart from the netflix queue and then went to bed, assuming I wouldn't hear a thing. I got a call from the nurse telling me that my biopsy is benign, so I should feel great. I was groggy, not understanding. Why would I have a biopsy? She said, oh come on, you should be so ecstatic! (Come on? Please—do you have a clue what you people have put me through here?) I started to comprehend what she was telling me so I asked, oh wait, my margins are clear? Yes, they are. Your cancer is gone. I said, oh thank you, now I can have a better weekend! Hung up the phone in disbelief and called Gabe upstairs to give him the news.

So I can finally say that the surgery part is done. I looked at my breast today when I showered, and either they somehow suctioned out all the fluid making it swollen, or my boob is just going to be a lot smaller than the other one, because there's no swelling or anything left. It hurts like hell, sure, but there's no residual bleeding or massive bruising like last time. Whatever, I don't really care what it looks like in the end. As long as I don't have to cut it off, I can always fill it in at some point if it really looks ridiculous. I can't tell you how happy I am to have come to this point with both breasts still attached to my body, and to be done with surgery.

So now I'm off to chemo. I have to do some crazy heart test called a MUGA on Tuesday. They will put an IV in me (they messed that up again for this last surgery and I ended up with two--one in the arm and one in the hand, and the one in the arm looks like hell right now), inject me with radioactive dye AGAIN, then take out my blood and put it back in me and make me lie still for two hours and look at my heart to make sure it's pumping. Really? I mean, I was in the ER after surgery on Wednesday due to this heart racing issue, and I had my blood pressure, pulse, oxygen level and temperature taken and everything was perfect. That was after we barely made it there before a torrential downpour, including rain falling in horizontal sheets. My mom and I called home to tell Gabe we made it and he was hanging out in the basement with the kids due to a tornado warning. There were tornado sightings at Midway airport and in the loop I guess, and the Metra wisely decided NOT to leave the station this time. We decided not to hang out in the ER after we heard that the wait was 2 hours since I really needed to be lying down, not sitting around a bunch of sick people. Anyway, can't you take their word for it that my vitals are ok? Is there a reason for this crazy test?

I know there is, and I know AC will put me through hell and will almost kill 3% of the people who use it due to heart trouble. I don't think I will be one of them, but I do worry about all these IVs I'm getting. I want to try chemo without a port, mostly because I want to avoid another 3 hour surgery. I’d also like to avoid alien objects in my body—having cancer was enough, I’m not feeling the need for anything else. But my veins are already looking beat up at this point so I’m not sure the regular IV chemo will work for me. Seriously, how could anyone be a junkie? I can't imagine sticking myself in the veins on purpose.

July 7 is the day—chemo day--assuming I pass my MUGA. I will then hopefully be cleared to give myself the white blood cell-protecting shot at home, so I won't have to go into Northwestern two days in a row for chemo. I would love to spend less time there. It really pissed me off that they put me in general anesthesia this time, for obvious reasons--I react badly to it, it takes longer to recover, but mostly, above all, because they told me they weren't going to do it. Then my husband finds out AFTER the surgery that I was under general, and no one tells me at all until I see him two hours later and he breaks the news. I was talking to the nurses for those hours and I felt confused that I couldn’t remember any of the surgery, but no one mentioned the fact that I was, you know, intubated or anything. I'm sorry, but I'm a grown woman, and I deserve to know what is happening to me, even if there's some lame ass excuse about a shortage of the twilight drugs. So you can understand my desire to avoid the hospital as much as I can.

I have another date on the calendar as well: July 15. My hair is due to fall out 15-16 days after chemo starts. I decided to jump start the process. I'm going to go back to my wig place on July 15, have the woman there cut my hair very short into a bunch of little ponytails so I can ship them off to this place in Florida where they can make a "hat" of my hair (bald on top, my hair on the bottom, so I can wear my own scarves and hats) and then have her shave it all off, so she can fit my wigs. I will have my head of hair until 5:30 pm on July 15, and I will walk out of there about 7 pm with some other, synthetic hair. Gabe is coming with me, so there should be ample amounts of crying, but I just can't let chemo do that to me. I would rather do it to myself. It's not much control to have, but it's better than nothing.

I’m going to end on something I was afraid I would never get to say: Here's to a cancer-free Katy, at least right now, this minute. For twelve days or so, no cancer and no chemo poison in my body, just a wounded chest. I'm just sitting here thanking whoever for the small miracles. I have known I’ve had cancer in my body since May 4, 2010, and the reality is that it was there for years before that, for all of the time that some of you have known me. And now, sitting here, I’m even more thankful for my decision to fight that initial July 9th surgery date and get this 16 days of my life back. That is something than cancer teaches you. Every day really does count, no matter how you feel at the time, no matter how sad or sick or exhausted you are. I guess I can’t fight cancer literally and make my life like it was but I can use my damn good arguing skills to try to convince everyone to do things my way. I’ve had to yell, and cry, and invoke sympathy for having small kids, and throw my little bit of research knowledge out there, and call nurses and doctors until they would have put me on the calling blacklist but for the fact that I have cancer. I’ve basically had to bug the shit out of people to get these days back, but here they are. It’s a little like being me again to know that I could do that—it’s just a glimmer, but it’s there.

Wednesday, June 23, 2010

Day 49 (I think?)

Well I'm done with my second surgery though I'm pretty out of it right now. I had to do general anesthesia again because supposedly Northwestern had a shortage of the twilight anesthesia, which doesn't make much sense considering my surgery was in the first group of the day at 7 am. So I'm shaky and out of breath, toes tingling, nauseous, headache. Kind of annoyed at the hospital at this point. We will find out my pathology next week, and as far as I know I will be starting chemo on July 7, assuming I pass the heart test that's required for AC. I have the surgical bra on again so I have no idea how much she scooped out. At least for now, I still have both breasts!

Saturday, June 19, 2010

Day 45

Last night ended one of the more interesting 36 hour periods I've ever spent in my life. After work on Thursday, I met up with my mom and we took a long and slow road out to the western suburbs to a specialty wig shop/boutique for cancer patients. We got there just a few minutes before my free consultation was to begin, and there wasn't much to see in the store. Why was I there, you ask? Well, I figured I should at least look into getting a wig. I've heard from a lot of young women with kids who say that the worst part of being bald during chemo, or one of them anyway, is that you go out with your family and get all these looks of pity from everyone. I'm already familiar with the pity looks and I still have all my hair. So while I assume my family, friends and co-workers can deal with seeing me bald or at least with a scarf on, there is something to be said for anonymity if you're just trying to go to the grocery store.

I sat in the shop, listening to one of the workers argue with a woman who wanted to walk out of there that day with a wig since her hair was thinning right then. This went on for a long time and it seemed a little contentious given the circumstances. While we were waiting I mentioned to my mom that I didn't want a human hair wig. Besides the exorbitant expense, human hair is exactly that--you have to wash it and take care of it like real hair. No thanks. The owner of the shop must have overheard me, because she came over and started to try and do a hard sell on a human hair wig. They last so much longer! You'll be wearing it for a year! (Hell no I won't. Just like every single other woman with breast cancer I've ever met, as soon as I get that men's buzz cut look going, the wigs and scarves are off). You can curl it! And style it! And blow dry it! (Um, I don't do any of those things with my own hair. In fact, I don't even know how). I kind of wanted to leave at that point, and they were running behind, and it was hot and I was fussy. I mean, what's up with the extreme sales pitch on a woman with cancer? But then my "stylist" came out to get me.

I liked her from the start. She gave me that once over that all hair stylists do when they meet you for the first time. No pity, no asking how old I am, or lamenting my pretty hair. She whispered to me that if I didn't want a human hair wig, I shouldn't get one, no matter what her boss said. Synthetic is fine--that's what she used.

Ah, now I understood the normal interaction. She's in the club. I told her if I got a wig I thought I wanted something short, with bangs, to hide my eyebrows after they fall out. I told her I don't do hair, don't style it, that I've always been a redhead so I thought I wanted a different color. She said ok, we'll see, but you know what? You're a redhead. I'm Italian, and I was happy to get fine sleek hair in my wig instead of my coarse natural hair, but I would've looked ridiculous with light hair. OK, but I don't want a red wig, I don't think. She brought out a bunch of wigs and my foray into looking like someone other than me began.

The first two were long. One was a brown Rachel from friends looking thing. Surprisingly, I didn't look like an idiot, but I didn't look too good either. Then some Beyonce-style blonde/brown curls came out and we all fell out laughing at that one. After that two short, layered, Meg-Ryan type of brown wigs. I was really surprised. I looked like a normal person. Not like me necessarily, but dark brown hair looked good on me with my eyes. I thought one of those could work. Then she gave me a Molly Ringwald style (present day Molly--long, straight with bangs) to see how I liked the red.

Well, I liked it. She was right. I'm a redhead. I look the most normal, the most like myself, with red hair. After all, this is not a wig for a costume party. It's a wig that's intended to help you blend into the world while you're poisoning yourself with chemo. It helps to look like a semblance of yourself. The hair color was good too. It's not natural and it's not mine, but if you didn't know I had cancer, or if you hadn't seen me recently, you might think I'd straightened my hair and put highlights in or something. I tried on some more red wigs, short, chin length, all straight--no curls. I only cut my hair three or four times a year, and those are the only times I ever see it straight, so I figured I'd at least go for a different style than my regular hair, which I will still sadly miss. My stylist and my mom kept raving about how cute all the wigs were, and it was hard to decide. I said I needed votes, because I would really rather keep my own hair, and all these wigs looked poofy on me because I have so much hair it was hard to contain inside the wig cap. But I found a few styles that made me look like me, if I were the type of person who "did" her hair.

But forget the wigs. I'll surprise you with a bald pic followed by a wig pic at some point. I really want to talk about my stylist. She was maybe one of the best people I've spoken to about cancer since I've received my diagnosis. She's older than me, 47 (with grandkids!) and she was diagnosed with triple negative breast cancer 8 years ago. She did chemo, including AC and taxotere, she had a lumpectomy and had to go back for a re-excision. We had so much in common. But more than anything, I loved her attitude, which was very open about cancer without it seeming at all out of place, depressing, or fake. Not that other cancer survivors I've spoken to have been any of those things, because actually everyone I've talked to has been great, but something about this woman was just really neat. She kept saying "yeah, this is awful," but she was joking with me too, saying she told the surgeon she should have just "taken a third" of the breast instead of going back in for the re-excision. She told me the wigs looked cute on me because I was cute. She said that when her hair grew in, she looked like her dad. That after 8 years, her doctor tells her "oh, you're good," since she's triple negative and once you make it through the first few years your chances of recurrence are much lower. She was just really easy to talk to, and it was more like going to get my hair done than going to do some cancer-related thing. Maybe I'm more of a beautyshop gossip person than a support group person. Who knows? The strange thing is, it was actually kind of...fun.

Which I really needed, more than I even knew. When I got home, within about an hour, Gabe was taking Augie to the emergency room with a 104 fever and strange breathing. He had to go into the baby-torture chest xray machine (have you seen those? They stick the baby in a tube with their arms sticking up...completely pathetic), and I was at home while Lenny slept, freaking out, unable to believe I couldn't be there with my baby. If Lenny had to go to the ER as a baby, which she did a few times, of course we both went. This was my first time as a mom not being able to be there for my kid. But we couldn't really bring Lenny along, and it's still hard for me to carry Augie for long periods of time. The kid weighs 22 pounds (he's 1. his sister is 4 and weighs, wait for it...29 pounds) so holding him for three hours in between surgeries didn't seem like a good idea. He came home in one piece--who knows what was wrong. Sick, dehydrated, his heart working too fast due to the fever. What a nightmare.

The fun continued in the morning, when I went in for my mammogram by myself since Gabe needed to be home with the baby. I thought it would be quick, even though I was really nervous about finding out if there was anything left that would preclude me from doing a re-excision. I'm actually too tired to get into the whole drama (our power was out for a while, so I started this some time ago and my train of thought is a little lost), but I think the whole city of Chicago was at Northwestern for a mammogram. I had a 9:30 appointment and I was there for over three hours. I had to go back three separate times for more pictures with three separate technicians. By the end, my stitches were bleeding. I made a few friends in the waiting room--, several other cancer patients were waiting for one thing or another (one was going for a re-excision, like me, and another needed a wire placed for a mastectomy, which really boggles my mind. You're cutting it off! What's up with the wire?). We were all really pissed, scared, and incredulous at the situation. I thought it couldn't be good if they kept calling me back. Finally, I was given a piece of paper and told I was done.

Excuse me? I was told I would be leaving there secure in the knowledge of whether or not I could go ahead with my re-excision next week. I started getting pissed. Many of you know what I can be like under normal circumstances, so just add cancer and shake and you can imagine. I said, I need to tell my babysitters what I'm doing so I can come into surgery, I need to know if there's something else there because if there is I'm not doing the damn excision, I'm going to start chemo and then do it, or do a mastectomy. Again, the nurse seemed surprised by my vehemence. What are we, sheep? You think I can handle breast cancer but I can't tell you what I need you to do? Please. So as I insisted, the radiologist saw me, and started telling me about some calcification (a single point calc she called it) that was far from the tumor site, but they could watch it. Hold the phone. My margin area is clear? Yes, there is nothing else suspicious there. You don't need a wire. But there's something else on the other side of the breast? Well, it's probably nothing, just a single point.

You could say that to a normal person. A woman with cancer doesn't give a shit if it's a single point. If there's something else in there, forget it, I'm done. She told me I could do some weird biopsy where I lie face down for 2 hours and they suction the "calc." I made it clear that if I didn't know for sure that that was nothing, the re-excision wouldn't happen. So get me a biopsy appointment on Monday or we have a problem. I know I was glaring and it's possible there was steam coming out of my ears. She looked at me with a mix of confusion, and I think, fear--and told me to wait.

As you all know, I've gotten good at that. At least at that point they had let me remove the bloody gauze from my chest and get dressed. Then I was called into her office and we actually looked at my pictures on the computer. This doesn't happen too often. She was excited to show me that my "calc" was "dermal" so it was in the skin and absolutely benign and no big deal. So why did you make me lose my frigging mind? Was this training day or what? Disgusted, but also happy with the news, I caught a cab and went to work.

Now just as an aside, I suddenly have a new boss, as they decided to do a spur of the moment re-org a week ago. Normally I would be very upset about this, and I was worried that my boss was being very supportive of my situation, but now I would be dealing with someone new. I hate the idea of change right now as I need some continuity, but I also really couldn't worry about it. I talked to my new boss and everything seems cool. I was able to tell her that I wanted new opportunities, was excited to work with her, but that I also really had no idea at all what the next 6 months or more would be like. She understood. In any other time, this situation would have caused some stress for me. Instead, I was relieved to be at work on Friday afternoon, unable to concentrate, with the knowledge that two bosses--my old one and my new one--were ok with my lack of productivity for the day.

One of the only things I accomplished was that I talked to a fertility specialist, who told me the long process of egg freezing that was available to me. Oh, to be a man! Even a man with cancer! A few minutes with a magazine and you're done, future fertility intact. No daily shots in your stomach, surgery, hormones, ugh. The specialist told me that if I had children she wouldn't recommend it, because the type of chemo I'm doing gives me a less than 20% chance of permanent loss of ovarian function. I said, both of them? She was talking about the ACT. I guess the TC has a 30-70% chance. You think when I asked if there were side effect differences they could have told me that? Seems significant for a 34 year old, even if I don't want more kids. There's the whole menopause issue after all--must be small potatoes in the oncologist's eyes. Since Gabe and I didn't think we wanted more kids, and since I know in my hear that pregnancy would be too emotional for me after cancer--too many hormonal changes, too much weight gain stopping me from feeling lumps in my breasts, too much sadness associated with nursing considering how I found my cancer--this talk with the fertility person was almost irrelevant.

Except that it wasn't, because it cemented the ACT over TC decision in my mind. So after this conversation I walked to the train in the rain. I got on, and within two minutes of me finding a seat--no joke--the sky turned green and the train started to shake in the station. Trees were being broken in half, folks were talking about how their office buildings were evacuated, and we all started calling home to say the train is moving while standing still and there's no way we will be leaving anytime soon because this is looking like some tornado type shit right about now.

And then the train departed, on time.

I thought, you've got to be kidding. What-- I got through this cancer diagnosis, only to die in some Helen Hunt scenario, except that instead of cows flying through the air, it was going to be our commuter train? Everyone was either silent or talking too fast. Did the train really just leave the station in that weather? Tornado-force winds up to 70 mph? Is this really happening?

How we got home I don't know. It was scary as hell. And very stupid of Metra. The bad part of the storm was over in 15 minutes. It wrecked havoc all over Chicago. They probably could've waited. But after calling Gabe and telling him how scary it was, I hung up and actually started to laugh. Life is just absurd. I felt like I was being punkd. Where's Ashton Kutcher?

Speaking of random pop culture references, I took Lenny to see Toy Story 3 in 3D this morning. I loved the movie, though it was very dark in parts. Lenny loved it too--she brought her Slinky Dog along. I couldn't believe Totoro had a guest appearance. I also couldn't believe how much I sobbed near the end. Me! I only cry in very inappropriate movie settings, like in Armageddon when Paris or whatever is obliterated and I was sad about all the millions of dead people I wasn't really supposed to think about. I'm crying that Andy is leaving for college, and his mom is sad. It's touching, sure. But why am I crying? Because I really want to see my kids go to college. I want to raise them and let them go. I don't want to miss it. I want to know what they look like and what they like to do. I want to lose this guilty feeling where I want time to speed up so I can be through this cancer year, because I want to live long enough to wish time would slow down and I could have more time with them.

And this might leave me tomorrow, but for the rest of the day I felt this strange sad peace with my cancer. I'm going to do this re-excision. I'm going to set up chemo whether my next margins are clear or not. If my margins are clear, great--I will finish chemo and start radiation. If not, I will probably do a mastectomy and reconstruction after chemo. I'm not doing a third lumpectomy. It's good to have decisions made, even though I will be unsure of the state of my cancer and my margins for probably another week and a half. I have to recover from another surgery, I have to go through chemo, I will have scary times due to germs brought home by my kids, I will have to figure out how the hell to take care of my kids, and I will not know until it's over if I have permanent side effects and I will never know for sure if the chemo has worked.

But I have to do it, don't I? There's no going back. There's only so much in the triple negative arsenal. I need to make my peace with chemo in order to make my kids' graduations. It's not fair, and it's awful. But as a dear, older friend from the neighborhood told me this morning, after having just lost her husband of over 50 years yesterday, your kids are fine. But they won't be if you're not there. You're the most important person in your house right now. She also told me what I am going through is worse than what she is going through (she is also a breast cancer survivor). Now I know 150% that that is completely, utterly, impossible. What I'm going through isn't a death sentence. Death is final, and she is dealing with death, and so much loss, and a complete upheaval in her life. I am dealing with loss, and illness, and its real, but it isn't my forever-- at least not yet.

Wednesday, June 16, 2010

Day 42: Waiting Blog

I haven't written anything in a while, because I have been knee-deep in this new brand of torture called continued waiting. I won't know if I can even have surgery next week until Friday. Even then, I will have to wait once more to get my second pathology back and find out if my margins are clear. I can't make my treatment schedule until all that is known. In the meantime, I have met with my oncologist and am now immersed in my second-favorite torture technique--making impossible decisions. So blogging has kind of been on the backburner.

But life keeps on rolling. On Monday, Gabe turned 35. Lenny made him a really cute card with a picture of our family and our backyard. All of us have really long legs for some reason. During work we went out to lunch and later he got a homemade brownie sundae with a few candles and we sang happy birthday. I didn't get him a card or any presents. I'm usually very good about that, but I guess I can make it up to him next year. We spent the morning at the oncologist's office, where we thought we received some excellent news and Gabe was considering that his birthday present. Gabe was crying with relief when the onc told us I could do 4--only 4--rounds of a chemo called TC every 3 weeks (taxotere and cytoxan). Only three months of chemo! I was expecting six. We couldn't believe it.

We discussed the possibility of this clinical trial as well, where I would do 4 rounds of AC (adriomycin) every two or three weeks followed by 12 rounds of weekly Taxol (ACT chemo). The double blind trial included the addition of this other non-chemo drug that they're testing to see if it helps fight recurrence. Gabe said, three months of chemo versus 5 or 6? That sounds too good to be true. What's the catch? The oncologist, who was fairly abrupt and clinical, and kind of dismissive of the idea that I would have any serious side effects, said that there was no catch.

Well, enter the Internet.

The company that makes Taxotere is being sued in France. There are some non-peer-reviewed studies that show a 3-6% chance that the drug causes, get this--permanent baldness. The company has changed their website to say "generally, after treatment, hair begins to grow back." Generally. No other chemo has been associated with this problem that I can see. Some people end up with different colored hair, thinner hair, curly hair--but they end up with hair. Imagine ANY other side effect that Katy could accept at that small percentage. This is not one. Now, I have talked to people who took Taxotere. I have asked the entire oncology team at Northwestern about this. No one has heard of this happening or seen it happen. Maybe there's something weird in France and the UK, but there are websites dedicated to this that include women in the states as well. The entire time I would be bald, and the months after that it would take for my hair to grow in, I would probably be totally insane, assuming it was forever. Women with this problem say they don't even remember their cancer, but every day they look at themselves in the mirror, or refuse to, and hate what they see and feel like cancer patients even though they're not anymore.

People are relatively dismissive of this baldness issue. When you talk about it, the responses are the same. It will grow back. It's just hair. Be glad you're alive. You'll still be beautiful. These people generally have hair, so I don't know how they know that. At the same time, people--often the same ones-- refer to me by my hair. Another mom at Augie's daycare forgot his name and told the daycare provider, "you know, the baby whose mom has long red hair." If men look at me I'm not stupid enough not to know why. Women ask me if my hair is natural, what I do with it. I've often been the object of hair envy. I've always appreciated it--I cut it three times a year, wash it, and walk out the door, and it looks great. Believe me, I don't feel vain saying that. I might as well be talking about the hair that lives down the street. It's not mine anymore. It's leaving me, along with my eyebrows, eyelashes, and all my other hair. Soon. This keeps me up at night, more than the fact that I don't look at my boobs anymore either, though I always liked them too; the scar is pretty raw looking these days and I just don't want to see it.

I couldn't be bald forever and be myself. I know that.

Which leaves me with ACT. I was confused about whether I was being offered that type of chemo even if I didn't do the clinical trial, which I definitely don't want to do after reading the precautionary statements about it. Forget how common the side effects are--the serious ones with this non-chemo drug are scary as hell. Liver damage, stroke, bowel perforation, fistulas in your lungs, etc. And it's not even a trial for a drug for triple negative cancer, which might appeal to me. So I'm freaking out, thinking I only have these two bad options.

It turns out I have the option of doing ACT without the trial: 4 rounds of AC every two weeks, followed by 4 rounds of Taxol every 2 weeks for four months of chemo. That's not much more than 3, but there are big disadvantages here too. AC has a 3% chance of causing heart failure, so you have to have your heart checked beforehand and monitored. You have to inject yourself with a drug the day after chemo to stop all your white blood cells from dying. It causes severe nausea, so you have to take a LOT of steroids to prevent that. It makes your pee turn blood red for days, though it's not blood, it's just red medicine. All Taxanes cause neuropathy, I guess--the nurse said they "expect" that. She also said Taxol causes it more often than Taxotere. Everyone I've talked to who did AC said it was brutal. So here's another impossible decision, though I can't even make it until I know what's going on with surgery. But I think I know where I'm going to end up.

Say what you will, I'd rather risk the heart failure than the permanent baldness.

I mean, assuming I live through the treatment, my heart will go back to normal. I'm young and healthy and should be able to take it, though I will suffer just like everyone else. Being bald forever? Not even if it's a small chance.

There's another reason I haven't written a blog in a while. This blog has a few purposes for me. One, it helps inform people of what's going on and I don't have to explain it. Two, it helps me process what has happened. I read back on these blogs a million times. When I read them I can say, yes that is what happened, or that is what is happening, but it's kind of like reading about someone else. It takes it out of my head and into a foreign space where I can analyze it. But alternately, writing down these feelings makes them real. If I admit to being vulnerable or scared or sad to Gabe or my mom or a friend, that's different than admitting it to the whole world. Writing it makes it true. And I just couldn't admit to how I've been feeling this last week.

I'm just not a chipper person. But I'm not pessimistic either. I'm pretty pragmatic. But every time I've allowed myself to get too positive with this cancer situation, I've been punched in the gut afterwards. Oh, it's just a clogged duct. Well, it's probably a common form of cancer. At least I'm done with surgery.

No, no, no. Now I know I have received good news. BRCA negative, stage one, no node involvement. The relief that goes along with these things is hard to describe. But the wrenching devastation with these other setbacks, and the subsequent waiting and inability to do anything as a next step, makes me feel something I have rarely felt in my life--defeated. Not defeated as in, I can't go about my day, but just emotionally exhausted. That's how the bald thing makes me feel too, even though it hasn't happened yet. I'm not really vain, but I have always had decent self esteem about how I look. I know people find me attractive, and even when hugely pregnant or 20 pounds too heavy or while sitting in a wheelchair I could rely on my hair to make me look presentable. Those days are almost over, and anticipating that is awful.

Now I am feeling something else I have honestly never really felt--envy. I've always been pretty happy for other people's happiness and relatively satisfied with my own situation, even though I get annoyed and cranky at the drop of a hat. Envy is just new to me. I worked out at the gym at work yesterday, keeping my left arm down at my side during all the arm exercises while people looked at me funny, and I felt so envious of the young women with long hair and working bodies. I look like one of them, but I'm not. I envy my friends who are doing things I don't even want to do, like have babies. I envy old women for getting to be old. I envy people with cancer that doesn't make them have to do chemo. I envy random strangers just for their randomness.

Every time I went through something hard as a kid, like epilepsy or the car accident, I can honestly say I never felt envy and I never felt like a victim. I think that has to do with being a kid and not really being able to see the world outside of your small version of it. Now that I'm an adult, it's different. Envy is an alien feeling to me and it's alienating at the same time. Admitting that I feel that way is hard, because I fear it will alienate me further from people. Just as I will not look like me, I feel like cancer has changed me on the inside as well. People are being wonderful about wanting to help us, and we've received some wonderful gifts even before I had surgery, such as plants and flowers in our yard. I've received mixes from two people already and chemo hasn't started. I know I have a lot of love.

But why do I have it? I worry about this cancer-related stuff being my only way of interacting with people. So I'll put a shout out to Chicago-area folks here. If you're doing something you think I'd like, invite me along. I can still eat and even have a drink before chemo starts, which I hope will be around July 8. I have been too overwhelmed to do the social planning I used to be so good at doing (well, I wasn't so great at it post-kids, but I was still pretty social considering our lack of babysitters). That doesn't mean I don't want to go out, it just means I am poring over cancer-related material rather than picking up the phone. If you call me, I might not be able to do something due to surgery or whatever, but what the hell, invite me anyway. If my only relationship with people is their casseroles or baby-watching, it will be easy for me and everyone else to forget why anyone wanted to hang out with me in the first place. I know I've already forgotten in the not quite two months that feels like two years since my diagnosis. Was I funny? Interesting? Easy to talk to? Hell if I know. Maybe just because my kids are really cute? Hey, that's fine with me, they're still the same. Very high levels of cuteness there.

Don't think from reading this that I'm depressed. I'm not. I'm sad, and very scared, and envious, and angry and wistful. I'm grieving, and I hate it because I have never grieved over MYSELF before, and it feels selfish. But I know it's real, and I'd rather feel it and get through it than go on drugs to make me not feel it at all. I also wish science were better. I am stage one, so there's probably an 85% chance that my cancer would never come back or spread. I'm going to go through chemo and radiation because I could be in the 15%, but there's no way to know who is who.

I'm more and more convinced that attitude is irrelevant. What amazes me is how you just keep going. I'm working, playing with the kids to the extent I can with my lifting restrictions, making dinner, cleaning, talking to people when they call me. Considering the emotional disaster that I am, I think that's enough.

And it's not just me, it's every young person with cancer. Be cranky, or mad, or be a fighter or feel bad for yourself or be super positive, I don't think that's the point. Wake up every day and face it, that's the important part.

I never want to call anyone out in this blog, and I've chosen to only identify my immediate family when I'm talking about people. So I won't do that here, but I wanted to mention something. On the day I received my pathology report that told me I had a positive margin, I ran into someone I know in the cancer center. I said I hoped she wasn't there for the same reason as me. She was, but for a different type of cancer. We will reconnect through this, hopefully help each other out. If she reads this it's up to her to identify herself or not. But I am hoping she reads this so I can tell her something. No offense, but I really wish I had never seen you again, because I wish we both didn't have cancer and that we were living our old lives. Cancer is not a gift, you don't end up better for it. But you take the solace you can from the people around you, and if science permits, you end up. One of these days.

Thursday, June 10, 2010

Day 36: Post Op Report

This is not the blog I expected to write today. I thought I'd be writing about how at around midnight on Monday, I suddenly couldn't feel my arm, all the way down to the fingers, about how I panicked and called the doctor on call who told me this was "normal" after lymph nodes are removed, about how I still can't move my arm very well at all. I thought I'd write about how wonderful it feels through all of that to have this cancer out of my body. I thought I'd write about the hard day I had on Tuesday, when I was very productive doing a lot of writing while working from home but then I just started losing it for hours in the late afternoon, sad and crying and thinking that while I should have all these fun things to look forward to, the only thing I saw right then looming in my future was chemo.

But that's not the blog I'm writing today. I'm writing about the fact that I have to go back for more surgery. I have one positive margin. I am still stage one, still had three relatively small tumors, and still have clear lymph nodes. But.

I still have cancer in my body.

As soon as the physician's assistant who was giving me the pathology walked in today, I knew. I didn't tell Gabe that until later but I could see it in her face. This might be a curse of being a very good read of people--sometimes I know how they feel before they do. Anyway she started in on my stage, tumor size, etc. I knew as well as anyone that if I had clear margins she would have told me that first thing, and then told me to wait a minute to pick up my baby and then sent me on my way. That's not what happened. When she was done telling me about the margin, she told me that they could do a re-excision, but if that excision found more positive margins, we should "think about other options."

She meant have a mastectomy. Besides the fact that I want to hold on to my body parts if I can, that seems akin to having to go through labor and a c-section. I'd rather just know I had to do a c-section in the first place, right?

I have felt disappointed and discouraged and betrayed many times in my life. I have made painful decisions, chosen the hard way, second guessed myself, and all of that. I was beyond devastated when I received my cancer diagnosis. But this was worse, because I had allowed myself to be happy that I was done with one stage of things that needed to be done. And then that was taken away from me too. To top it off, when they came back with a new surgery date, they told me I would have to wait until July 9.

I had held it together until then. Only a few tears. I completely lost my shit at that point. I was sobbing, saying I couldn't wait that long, how could they ask me to live with cancer in my body for that much longer and then put off the rest of my treatment. I said, we have help for this summer. My relatives are teachers and have the summer off, and I thought I'd get through some of chemo with their help. We were told the surgeon was going on vacation, and then both Gabe and I lost it a bit more. Don't talk to me about anyone's frigging vacation. We were told this was standard procedure. I said this is not standard for me. Gabe said I know this is your job but this isn't just a job to us.

The nurse left--she seemed unsure of how to deal with us crazy people, which was surprising to me. What do they expect? She sent the physician's assistant back in, and I lost it even further. I told her, look, I'm 34. My kids are 1 and 4. I need to live. I need to know this isn't going to spread, and I need to move on with my life. The month between diagnosis and surgery for me was the worst thing I've ever gone through and you're asking me to do it again. I am supposed to meet the oncologist on Monday and find out my treatment schedule. Now what am I going to do?

Earlier in the appointment this assistant had asked me when my son was born. It turns out we had our kids on the same day at the same hospital. While I was sobbing all the statements and questions above, Gabe asked her, what would you do if this was you? And honestly, I think that's one reason she went and called the surgeon while she was on vacation with her family (it turns out my surgeon has a three year old and a six month old). I could see that she realized how hard it would be. It's hard for anyone to have cancer, harder if you have children, even harder if you have a baby who just can't understand what is happening and lifts his arms up to you and cries when you can't pick him up, who now will only drink a bottle from you, who misses you even when you're right there in the room. I told her, give me another surgeon if you have to, I don't care. Even if it only saves me a week's time. That's a week of my life and my sanity.

Gabe and I went out to lunch and went back to my office. I did a little work, talked to another cancer survivor, and gripped my cellphone in my hand waiting for that call to tell me if an earlier surgery date would be available. It didn't come. We picked the kids up from daycare, Lenny went to play next door and I started to get ready to take a walk while Gabe fed Augie dinner.

Then the phone rang.

It was the surgeon herself, and I could hear kids screaming in the background. She started talking to me about my pathology, that it was good, stage one, etc. She said she knew I had talked to them about needing to do a re-excision (that's what they call it. just call it lumpectomy #2 and stop bullshitting me). And then she told me I had a few options. I could do chemo first, and she could re-excise later. That option made me feel better--I could make sure the cancer hadn't spread. Or, I could get in for another mammogram that would tell them if I needed another wire placed (she didn't say needle loc!).

Now I don't get why a mammogram would show something else after I just had one on Friday, but this is the way they do things. If I get in for a mammogram and it doesn't show any other spots or masses of concern, I can go in for a re-excision on June 23. If it does show something, we need to find another date because there's no time on that date to place the wire. I was so relieved--16 days earlier. That's 16 days to not wonder if cancer is spreading to my lymph nodes, even though she told me that wouldn't happen. She also told me that I should assume the cancer is already out--this margin issue doesn't mean there's still cancer in my body, it just means they need to be more sure so that it doesn't spread throughout the breast.

Whatever. To me, and to every other woman who hears this news, it means I still have cancer. And I can't move on to that next phase of this process until it's gone. And I have to wait, and waiting is worse than pain, or numb arms, or insomnia caused by how uncomfortable the left side of my body has become. So, I got on the phone to schedule the mammogram and got an appointment for June 18. I will know that day if it's clear and I can do June 23. If not, I am inclined to do the following: start chemo and then have the whole breast cut off, avoiding radiation. That will make me sad on so many levels if I have to do it, but this uncertainty has drained me to the bone.

I know that the effect this is having on me is not unique. My mom has a friend who received this re-excision news and stayed in bed crying for two days even though that is very contrary to her nature. Gabe said that the fact that I was still standing was a testament to something about me, though he wasn't sure what. I think I know what it is, and it isn't good, but it isn't bad either. I think that most of the time I see things as they are, rather than how I would like them to be. That's what makes this setback so hard--the one time I decided to be really positive and assume everything was great, rather than just wait and see, check out what happens!

Let me try and explain, if only so I can understand myself better myself. Four months after Gabe and I got married, his aunt and grandma sent us on a belated honeymoon to Maui. Hawaii is the most beautiful place I have ever seen. It's as if every other place has pollution and weeds and they have rainbows and flowers. The bad weather is wonderful, the scenery doesn't look real. We considered quitting our jobs and working in the local grocery store, until we realized it would take about 5 jobs a piece to afford the place. We never wanted to leave.

But we had to leave this paradise and go home to Chicago's February. It was a direct flight, 10 hours. Torture. You get so bored, especially if you're like me and you can't sleep through the flight. We were told when we got on the plane that there were solar flares, and we had to fly low, and that we would expect some serious turbulence once we got across the Pacific. Um, that's only halfway through the flight. Not good news.

I have always feared flying, in the sense that I grip the armrests until my knuckles turn white with every takeoff and landing. And yet I was always been kind of proud that it didn't stop me from flying. I even chose a career that used to include a decent amount of travel, until I spent much of the last 5 years either pregnant or nursing and felt that traveling was too much of a pain in the ass. When flying I have never cried or threw up or screamed or anything--I just held on and waited.

This time, on our flight home, we hit massive turbulence in California and it didn't stop. This was an overnight flight and most of the people on the plane were asleep. At one point I was looking at the little TV screen on the seat-back in front of us, watching our plane's progress. As I found out later, so was Gabe. Suddenly, the plane plummeted 5,000 feet, with a huge bang. Gabe and I grabbed hands and looked at each other and I honestly thought, I am looking at my new husband for the last time because we are going to die, right now. I didn't scream, though my heart was in my throat, so maybe that was why. In the end, we didn't die, obviously. But that was not a normal situation and I could see it.

How I envied all those people who could sleep through that. And I'm not saying that being awake was better, just that some people can sleep on airplanes and some people can't. I'm in the latter camp, for better or worse. I could go through this cancer experience asleep, or with my eyes closed, thinking everything was fine...if I was different. I'm not. This cancer is bad, and something else bad has happened. It doesn't mean I can't or won't live my life doing everything the best I can. But emotionally I feel like my eyes are pried open all the time and I'm staring the beast in the face. I can't fight him physically, because he's not some man standing in front of me who I can slap in the face. He's me, he's my body. I need to kill certain parts of me to keep the rest going. It's worth it, but it's hell until you get there.

That's what I'm waiting for now. Those moments of terror on the plane were few. I'm having those moments now, but they will last months, even years. I know they will get better. Until that time, I'm trying to just hold on to the armrest and wait until I get back home, that place that seemed so mediocre before compared to the beauty of another place or another life I might have lived, where that frigid February wind and darkness and smog were so beautiful because I had finally landed safely. It's just going to take a while to get there, I guess.

Sunday, June 6, 2010

Day 32: Lumpectomy blog

After writing my short blog yesterday I felt like writing a longer one on the surgery itself.

Note the pic of the unsuspecting Katy taken a few minutes before she left for the hospital for surgery on Friday. I thought I would blog about this experience, as I think that the medical community does little to nothing to prepare you for what's going to happen. First of all, a lumpectomy is not one procedure. For me, it was six procedures. For some people, it is seven, and others have to do the whole thing twice. More on that later. But for someone who has had a lot of medical procedures done, everything that happened was a little overwhelming, even for me. As I'm describing this, keep in mind that we're talking about breasts--sensitive stuff. Women, you get the pain involved with this sensitive area of your body. Men, just substitute "testicle" for "breast" with everything I say.

The day before surgery I got a call from someone to tell me where to go and what time to be there. I needed to be there at 6:45--but in a different building than where I would have surgery. Huh? Why? You will be getting mapped for your sentinel node biopsy. OK, I knew I was having the lumpectomy and the sentinel node procedure, but mapping? Then I would go to another building for my "needle loc." These people have got to be kidding. What the hell is that? Luckily, a co-worker who had gone through a lumpectomy had warned me that they thread a wire through your tumor prior to surgery. You'd think they could tell you that, it's not like that's some minor inconvenience. And why not call it "wire placement" or something that makes sense?

So I specifically asked this woman if I would be able to wear lotion or deodorant the day of surgery. She seemed surprised that I asked this question. Why would that matter? She actually asked me that. Um, do I need another ultrasound or mammogram? No, she said. Well, she was flat out wrong. I needed both. Shouldn't the person giving pre-op instructions know what the hell she's talking about? I had been annoyed not to hear anything from anyone by 3 pm, so I called my surgeon's nurse, who called me back and actually gave me the right information.

So we show up at the hospital at 6:30 in the morning and I haven't eaten or drunk anything, including water, since 8 the night before. I'm already hungry. A very nice nurse comes to get me to take me back for my mapping. She was great, and I thought it was funny that she kept saying "if it's all right with you, I'm going to do..." What am I going to say? It's not ok, I want to go home? She was cute though. The mapping starts with "an injection of radioactive dye" into your breast. Think about that. Radioactive. Injection. In your breast. Or, OW. Gabe asked how long the radiation stays in your body. For a week, but you aren't actually radioactive after 6 hours, so you can be around your kids. Awesome.

She told me that the injection "is definitely not fun. It will not feel good, but I'm told the pain goes away in about 30 seconds." Now this is a long, laborious procedure. You get injected and then they start an hour to two hour long process of taking 5-minute xrays of your chest in a fairly claustrophobic machine. For most of the hour I was there, my left arm was over my head. I was "lucky"--they found my sentinel node quickly and I didn't have to stay the second hour. But after thirty MINUTES, when I could still feel the pain from the injection (no anesthesia here), I complained about it. The nurse was shocked. You aren't supposed to still feel that! I had been warned by other women that thin-ness, especially combined with having small breasts, makes everything much more painful. So I asked if that could be the case here. And she said, "well, yes, the women who come in here who are bigger women, or who have very big breasts, they don't feel a thing. It's not fair, huh. Being skinny is supposed to be a good thing, but I guess it won't be for you, at least not today."

Boy was she right about that one.

After all of this high-tech medical stuff, this is what the mapping comes down to: a Sharpie. They take a marker and draw a blue X under your arm. Who knew? When this was done, we went to collect my clothes and my husband and the nurse walked us through the bowels of Prentice hospital. Now this building was completely rebuilt maybe three years ago, and the basement we walked through was dank, decrepit, and looked like a 50 year old CTA subway station. There must be a rule that if it's underground in Chicago, it has to be just short of repulsive.

So we get dropped off at the next appointment and I walk up to the next reception desk. The guy asks me what I'm there for, and I say I'm there to get a wire placed for a lumpectomy. Oh, you're here for a needle loc. I kind of wanted to give him the finger.

Instead I went back into the same waiting area I had gone into for my initial ultrasound, mammogram and biopsy before I was diagnosed. I was ready for surgery, in the sense that I had taken off all my clothes and put on two hospital gowns and hospital booties. But ready is a relative term in this situation.

There was another woman in the waiting area, probably in her sixties. Now those who have had mammograms recognize that all women who are getting them are terrified, and people deal with this in different ways. Many women talk nervously to each other. Me, I read People magazine. This lady was a talker and I hardly got to read a page before she started in on me. She said, oh you look like you're ready for surgery! I said yes, I'm having a lumpectomy. Oh, did you get your biopsy back yet? Is it benign? I thought, Hello, did you hear what I just said? I just ignored her. She went on and on about different issues she's had and how it can be many things that aren't cancer. She asked me again if my biopsy was benign. No, they know that I have cancer. I'm here to get it removed. Then she told me her mother died of breast cancer. Thanks. She asked how old I was, and I told her 34. Oh, my daughter downstairs is 35 and she doesn't even have kids! Right, because this is clearly about HER. When this lady left, she didn't even wish me luck or say goodbye. Note to all out there: don't be like this lady. Fear is no excuse for insensitivity.

After this lovely conversation, I was collected by the same woman who did my initial ultrasound. She remembered me, and that I had been in exactly a month before. She asked me about my baby and my vacation. Either she has a great memory, or us youngins really stay in their minds. I went in for the ultrasound so they could locate the tumors again. This woman is a very good radiologist. It was a fast procedure, and it ended with more Sharpie: this time, black circles to mark my tumors. The whole time I was feeling really emotional, weak, and it was hard not to cry. I didn't expect to feel that way. I kept thinking about my lymph nodes. When she finished, she asked me if I was all right. All I could do is shrug. Not really, you know?

The doctor came in to put in my wire, or in my case, wires. At first she planned to put in three since I had three tumors, but she was able to do two, by threading one through two tumors. She injected me with lidocaine, which definitely hurts (again, an injection in your breast is PAINFUL, and mine are small and I have no extra fat to shield me--ugh). But you're fine with that pain, because when you had your previous biopsy and there was a 14 inch needle involved, you were glad you would only feel the sting from the anesthetic and not that monster. This time, the needle contained a wire that was thread into each tumor. They leave the wire in you, sticking out. So now my breast was covered in marker and there were wires sticking out of me. It has been over a month since I've felt that there was anything remotely attractive or sexual about my breasts, and this did not help. Breast cancer can make you feel like an alien. Marked up, wires and ports in your body, eventually bald, it's like a bad sci-fi movie.

Wires placed, I needed another mammogram. My excellent radiologist did that as well, and it only took a few pictures for her to get it right. She looked at me and said, well, this will be a trick. Yes, I know, us 34bs are hard to mammogram. You have to grab the breast, contort my whole body, and do some superwoman trick just to get in in there. She knew what she was doing though. When she finished, I was in a wheelchair sitting in the hallway waiting for Gabe. I was crying silently, already tired and overwhelmed and my actual surgery hadn't even started.

By around 11 am my fourth procedure was done and I finally went into the pre-op room. My conversations with the nurses and anesthesiologists about past medical history was longer than usual (4 past surgeries, epilepsy, toxic reaction to medication, medical allergies, car accident, etc.) and they kept telling me "huh, that's a lot." Well yes, but now that has all been trumped by CANCER. The nurse who placed my IV was again excellent. I've always had issues with that, and when Augie was born it took five tries and four people, including a specialist, to place an IV for me. When this woman just put it in like it was nothing, Gabe almost had a heart attack. He asked for her name and kept praising her to everyone who would listen. Other than that, I of course don't remember the lumpectomy or sentinel node biopsy since I was under general anesthesia, intubated, and as I described yesterday, totally out of it. What I do remember is thinking that they should have a counselor waiting there for you when you wake up, because there has to be a better way to learn your cancer has spread than to wake up alone and feel that damn drain. I had asked if my husband would be told about the nodes, and they said yes, but it didn't occur to me that he wouldn't be there to break the news--I would find out all by myself, just by touching my chest. What I found out was good news, but so much of the way they do this just seems like torture to me.

I found out later that Gabe and my brother were wondering where I was for a long time after surgery. My surgery was over before 1 pm and the surgeon came out to tell them how it went, that the lymph nodes were clear, etc. They expected to see me soon. But after I woke up, after having the conversations with the nurse about my nodes and stage, I told her I was in a lot of pain. I have a very high tolerance for pain, and in the throes of back labor with my deliveries or with both hips broken, I usually said I was a six on the 1-10 scale of pain. That scale is stupid. I figure you can only be a 10 if you are at death's door, or if you are a burn victim. Burn victims get 10, so after this lumpectomy I said I was an 8. That is a lot of pain for me. She gave me more pain medication in my IV, which made me nauseous, and then the anti-nausea medication knocked me on my ass again, and this whole vicious cycle began which kept me away from my family for a while.

So there's the lumpectomy story: six procedures. Node mapping, ultrasound, wire placement, mammogram, lumpectomy and sentinel node biopsy. For women with positive nodes, they get a seventh procedure with the axillary dissection. Next Thursday I will have my post-op appointment and my official pathology will be available. If I don't have "clear margins" I might have to do all this again. That's not going to happen, right? I could also theoretically be upgraded to stage 2, but that's not going to happen either damnit!

In the meantime, this thing HURTS. Not just a little, not some dull ache. I'm talking searing pain. I can't take the real painkillers. They gave me darvocet and my vision got blurry. I started looking at the side effect list and I saw in huge letters "CONTACT YOUR DOCTOR IMMEDIATELY IF YOU EXPERIENCE VISION CHANGES WITH THIS MEDICINE." OK, never mind then. When I had codeine after my wisdom teeth were removed, I hallucinated, and not in a good way. I couldn't remember who I was or where I lived. This is why I don't do drugs. I think they would kill me before I could ever enjoy them.

So I'm hanging out with some extra strength tylenol and trying not to think about this wound on my chest, sitting right on my muscle, making it hard to lift my arm or put it down at my side so my arm is kind of stuck out half-sideways. I'm bruised and swollen on that side about a cup size, and the gauze is stuck to the inside of my wound where the stitch is, so now it actually looks like there's something wrong with me. At least you can tell when I'm naked, which I haven't been until today when I could finally take a shower and take stock of the situation. Not pretty. But, it makes me realize how glad I am that I didn't have to have a mastectomy. I feel alien enough. Like they said to me, that's a lot! Yes, and it's only just begun, but at least part of it is thankfully over.

Saturday, June 5, 2010

Day 31: Post-op

I know people have been waiting to see my next blog. This past week was just too emotionally draining for me to write anything, and yesterday I was completely out of it. I have had 4 past surgeries, been pregnant twice and have had two newborns to deal with, and I even had mono in high school. But nothing has laid me out like this. In the recovery room, I fell asleep sitting up eating a cracker. Gabe had to carry me from the car, into the house and up the stairs to bed. My mom brought me a delicious homemade brownie and it took me an hour to eat it. So, clearly, no blog. And I figure I can be forgiven for the unflattering picture of me in my hospital-issued ultra-control bra, looking exhausted and bloated--at least I'm standing up!

The day before surgery the surgeon's nurse told me that if I woke up from surgery with a drain attached to my chest I would know that cancer had spread to my lymph nodes. When I half-woke up, in a deep fog, the first thing I did was check for a drain. I didn't feel it. I saw the outline of an attending nurse in the corner of the room so I asked her if I had a drain. No, your lymph nodes are clear. I drifted back to sleep and when I woke I asked her if this was a dream. No, this is the real deal. She and I had this same conversation at least half a dozen times. She was very patient with me. I finally got up the courage to ask what stage I was. She didn't know, so she went to get the surgeon's report. This initial report could potentially change when the full pathology comes in, but I'm going to go with it. The surgeon said that since the cancer did not spread, and the individual tumors are distinct from each other and very small--I am stage 1.

Stage 1. In my new universe of what constitutes good news, this is nothing short of amazing. I mean, I have 3 tumors. Yes, it's been upgraded to three. I found them when I was lactating, when it often goes undetected for a long, long time because it's hard to feel anything. I'm told if I hadn't lost all that weight after Augie was born, if I weighed even 15 pounds more, I probably wouldn't have felt anything at all and it would have been months before my diagnosis. Months for a triple negative cancer isn't good. And although this damn triple negative status means that stage 1 will not save me from chemo--still. There's relief, and then there's this. This is something else.

One of the most isolating things about cancer is that no one can really understand what it takes from you, unless they've been there. One of the many things is your sense of control. You can do everything right and still have cancer, still get weak and suffer. Yet I have also learned that there is a big difference between fear and weakness, or denial. Everything I've done so far has scared the shit out of me. Finding the lump, making Gabe feel it, calling my doctor right away, following up on the ultrasound appointment immediately, having them do the biopsy on the spot, hearing my diagnosis, calling the surgeon and the oncologist, doing the BRCA test, all of it. But I did it anyway. Maybe it's the planner in me, but for the past month all I could do was try and plan the next step. Everything I need to do in the future scares me too. On the other hand, the future would look a lot bleaker if I had been in denial. So regardless of how illogical or irrelevant it is, no matter what anyone tells me, I'm taking this one back. I'm stage 1, and I'm taking all the credit for it.