Day 337: Cancer Party

Yesterday marked an interesting milestone in my cancer trip (I will never talk about this as a "journey"--too granola for me). Last night, Gabe and I attended our first cancer party. Northwestern sponsored an event at the Museum of Science and Industry for young adult cancer survivors. I contemplated going by myself, but that seemed strange, so we asked my mom to babysit and we made a date of it.

The day got off to a strange start, as I was hosting a semi-annual meeting at work for a group of people I only see at these events. Last time, in November, I wore a wig, since I was completely bald and had no eyebrows, I was on disability and I just went in to work for the meeting. I didn't feel like explaining myself or scaring people. No one seemed to notice that my hair was shorter or straighter. The time before that was a year ago, and I had lost all my baby weight and was a few weeks away from finding out I had breast cancer, and my hair was long and curly and beautiful. The time before that, I had a small infant, before that I was enormously pregnant and weighed sixty pounds more than I do today, significantly altering the overall look of my face and body. All of those meetings went smoothly, with people saying hi Katy, how are you, how are your kids, when are you due, how is the conference planning going, etc.

Yesterday no one recognized me. I am the same size as I was a year ago, and my face looks exactly the same. I was wearing a nametag, for God's sake. And yet people who have known me through all of these different changes for years and years introduced themselves to me as if for the first time. "Hello, it's nice to meet you." Um, it's Katy, here at the Fed, remember? One guy who didn't attend the last meeting had seen me a year ago; that was the first time he had seen me in a year, since I was pregnant. The last time I saw him he said he hoped I wouldn't take this as something inappropriate, but I looked great. This time he did a double take and looked absolutely shocked when he saw me. You have a new haircut! Yes, I said, I'm trying it short. He said it looked good, but his shock was palpable. At least he recognized me, I guess.

A Fed employee who works in another location asked me if I had always had my hair that short. Well, I said, for a little while. What could I say? I know he saw me in the cafeteria when I was bald, so that confused me. Then I realized that he didn't put it together that the bald woman and I were indeed the same person. If there are those who thought I was overstating how much my long red hair was a part of my identity, how much people associated that with me and didn't notice anything else about me, now you see what I mean. It's as if the rest of me was completely invisible when I had that hair.

It's a new Katy these days, and I'm not tempted to go back. I was that redheaded lady for many, many years. I guess I can be someone else now. Maybe I'll be the person with the big brown eyes, or maybe people could get it together and not associate everyone with a physical characteristic. That was lesson number one from yesterday.

Anyway, after work, we attended this party at the museum. They had cocktails--only one was free- and appetizers, including some that were completely confounding for an event catering to people who have cancer, since ostensibly some of those people might have been in active treatment. I mean, you're going through chemo and you want to eat chorizo-stuffed jalapenos or mini corn dogs? What a recipe for disaster. I was just thankful I could drink red wine, now that my hot flashes are gone.

I was glad Gabe was with me, since I didn't feel like mingling too much. I spoke to one woman who approached me and asked if we worked for Northwestern or what our connection was. I'm a cancer survivor, I said. I just finished treatment in December. Congratulations! (Everyone congratulated me when they learned this--it seemed odd until I realized they were really saying, thank God that's over, for now, huh?). It turned out she had leukemia and was three years out. It was nice to be able to tell someone about my cancer without the normal reaction of shock, discomfort, disbelief, fear.

There were a few bald women in the group, but otherwise it was impossible to tell who was a cancer survivor, who was a spouse or sibling or friend, who was a volunteer. I thought it would be an interesting experiment to put a bunch of healthy people with no connection to cancer in a room like that and make them understand that 90% of the people around them assumed they had cancer, even if they didn't. How would that make people feel? Would they be tempted to explain, saying, I'm not really one of you? People like Gabe and the other family members wouldn't have that reaction, because they've lived with cancer and are probably too tired to imagine being ashamed of it. That's how my mind works though. There's always a sociological experiment hiding in plain view.

After gorging on unhealthy food and a few veggies we sat down to hear a panel of experts talk about us. I thought it started off strangely, with a woman explaining that we are the lost tribe of cancer survivors. Everyone knows about the little bald children, she said. Everyone knows that old people get cancer. No one realizes that people in your age group (15-39) are 2.7 times more likely to get cancer than children. Also we have made great strides for survival for pediatric cancer and for older people, but have plateaued for this age group.

Great, I thought. We're all doomed.

I don't think that was her point, but that's what it sounded like from where I was sitting. Anyway, the folks on the panel talked about the special issues that are raised when you have cancer as a young adult: fertility issues, raising families, being in the middle of your prime working/earning years, sex, relating to your peers whose lives keep on going while yours grinds to a halt. There was talk of hope and resilience, and the speeches were very short. The one that was quite touching was from a woman younger than me who had hodgkins disease at age 14, and was diagnosed 17years later with breast cancer, most likely caused by the radiation used to cure her pediatric cancer. She just got married, she's trying to preserve her fertility, and while she was very positive I thought wow, talk about a lot of bullshit. Anyway, after the panel, they opened it up for questions.

I thought people asked great questions. One woman who had breast cancer twice, once in her twenties and once in her thirties, asked why there's not more discussion around preventitive mastectomy for BRCA positive women. Another woman asked what you are supposed to do when you find out your young husband has colon cancer and there are no risk factors, no genetics, nothing to explain it. Then a woman commented that one thing our age group is bad at doing is discussing death and dying. Everyone wants to talk about living with cancer, survival and all of that, but the truth is there are people are age who are dying of cancer and they feel completely isolated even from those of us who get to be in the dubious "survivors" club. (And that's the truth. God help you if you make the mistake of not "beating" this thing. That's the least you could do, right? Smile or die!)

Then I decided it was my turn. Gabe seemed surprised that I went up to the mic in the front of the room to say something. Perhaps he was afraid I would have some sort of wardrobe malfunction, since I was wearing this J-Lo low cut blouse. It does seem ironic that the first time I ever donned double sided tape to stop my braless breasts from being exposed from my outfit was during a cancer convention. At one point when I was getting dressed I looked down and thought, huh, I guess you can see my radiation tattoo. Maybe I should cover that up? Nah, no one's going to give a shit where I'm going. But I digress. Gabe must have forgotten that while I don't like to do personal things in front of strangers, public speaking doesn't bother me for two seconds.

I said my name and stats, which is very much like being in AA. Hi my name is Katy, I was diagnosed with breast cancer almost a year ago at age 34, when my daughter was 4 and I was still breastfeeding my son. I think one of the toughest things about having cancer at this age is how impossible it is to find other people with kids, especially kids as young as mine, who have had the same experience. It's very tough to figure out how to talk to young children about cancer, and I'd like to know if you have any advice for people in that situation.

I got one answer, a short one basically acknowledging the problem and suggesting I contact Imerman's Angels. It seemed that a lot of the suggestions focused on going to support groups, contacting people, etc. Well I did get in touch with Imerman, and I found someone who lives far away but was triple negative with kids the same age as mine were, also breastfeeding when she was diagnosed, and that was a big help. But my criticism, to put here on the blog, is that the other thing that makes our age group unique when it comes to cancer is how damn busy we are. We have kids, work full time, take care of parents or grandparents, go to school, we're married.

Cancer and its treatment could be a full-time job for someone who has none of those things going on. For someone in my position, it was all I had time to do. If I was feeling well enough to stand during chemo, I went to work or hung out with my kids. I didn't drive all over creation to a support group. I had a hundred books and pamphlets to go through, a lot of phone numbers to call, a million decisions to make, especially at the beginning. Then I was essentially physically incapacitated, except my life didn't allow for that, so I continued to do everything anyway.

The most useful thing for me, or someone in my situation, was when they brought the services to me. I laugh now when I think about the one time during chemo when I had acupuncture during the infusion and I was visited by both the social worker and the dietician. But that was perfect! I had to be there anyway, and acupuncture cost money and time when I did it on my own. Moreover, I really needed a social worker not so much for me but to find out what to do about Lenny, and even though I felt a lot of parental guilt about it, I knew I didn't have time to go to Northwestern or Gilda's club (why is everything on the north side? actually there are services in the south suburbs, but that's still far) to get some advice. And I sure as hell wouldn't have gone to a dietician on my own time. Yeah, I know I only weigh 110 pounds. I'm not going to starve to death. Once this chemo shit is over, I will gain weight again. I've been hanging out here at 115 pounds give or take a few for months now, so I'm glad I didn't take time out to do that.

I wanted to tell these folks that the reason they got such a great turnout for this event was that it was NOT a support group. It was a $15 per ticket special event at a really cool museum, with a lot of food and alcohol as well. People my age like to do stuff like that, it makes it worth getting a sitter. You think I could say, hey babe, let's spend the night with a bunch of people in a room talking about cancer, and either of us wouldn't have found five other better things to do?

However, I was so glad we went. After my innocuous question, we got our free tour of this new mind body exhibit at the museum. It took us a while to get started, because so many women came up to me to thank me for asking the question and to say they had been in the same situation and they never had anyone to talk to about it. Three women had 4 year olds at the time of diagnosis. One had a friend who might want to talk to me. Another had a four year old and was lactating at the time, though her baby had just weaned.

It was especially interesting to talk to her, because I think what you go through when you have a baby and cancer is a situation that is almost impossible to convey to anyone who hasn't done it. She found out she was BRCA positive, and though her cancer was DCIS so she didn't have to do chemo or radiation, she had a double mastectomy and might need her ovaries removed, leading to permanent surgical menopause. She got a little choked up saying she didn't know at first if she should approach me, because she could tell by my hair that I went through things she didn't have to go through, and maybe she had no right to compare herself to me. I said well, I didn't have to have a double mastectomy, and I have my period again. So I think it all just sucks. We don't need to worry about comparing.

I understood what she meant though. She said it's hard to figure out where you fit. When she approached me, Gabe and I were talking to the woman who was brave enough to bring up death in the discussion. As I started talking to the new woman, the other woman left, saying she had a hysterectomy at age 30 due to ovarian cancer and therefore couldn't have kids, and it was hard to hear us talk about our families. I think my new acquaintance felt terrible, but I just felt glad she said that out loud and left. I think we all need to do what we need to do. People wanted to talk to me because I had mentioned little kids, so that was the context of the conversation. There's no reason for us to feel bad about needing to do that, but there's no reason for her to listen if it's painful either.

And this is why I often feel caught in the middle. Most women with breast cancer are older, and their kids are grown. In general these women feel sorry for "girls" like me. We can relate to each other in a way, but it's also entirely different. And yet there's a level of discomfort with young breast cancer survivors when I manage to meet them as well, because the majority of them were diagnosed young enough that their fertility was taken away from them, for at least five years if not forever. Those few of us "lucky" enough to have kids before diagnosis (though in cases like mine, not before cancer, which I had probably during both pregnancies) and "unlucky" enough to discover our cancer in our prime reproductive years are a strange breed indeed.

I left with some phone numbers and a different sense of perspective about what a support network is. I still don't think of myself as a support group person, and I don't think I need therapy, as I am not unduly depressed or agitated about cancer--outside of the general fear that only people without cancer think is alarming. It was just so relieving to talk to people about things like going through menopause when you have little kids, needing to write your will, explaining chemo to a preschooler. I said something I have only said out loud to a very few people, lest I come off as ungrateful. You all know how much we appreciated everything that was done for us when I was in treatment--the meals, the babysitting, everything. I always had this nagging thought though, that if the tables were turned and Gabe had cancer, much less help would have come our way, and not because people would have been any less concerned. But if he had testicular cancer, say, and I was a healthy 34year old working mom, the notion would be that I would have cooked, I would have taken care of everything. It was the thought that Gabe would have to work, be in charge of the kids, cook, etc., that made some people shudder. All the women I spoke to--and their husbands! agreed. One husband said, we have our strong points, but we don't keep it together as well, and everyone knows it.

Thank you for getting that out of my head and into the world. It was a relief to say, all working moms worry about balance. I just take it a step further, and think, jesus, if this is the last year or so of my life, do I want to drive myself crazy figuring out how to cram dinner and baths and cleaning and quality time into the two hours between when I get home from work and the kids go to bed? I know I need to work, so I can bitch with other moms with the same concerns, but they're not thinking about dying. Yes, I know anyone could get hit by a bus tomorrow. Shit, so could I. I just also have this cancer thing that is real, not hypothetical, and it changes everything.

But everything changes everything. I liked this one part of the exhibit that talked about stress. Apparently, human beings have an amazing capacity to absorb major stresses. We let it affect us severely for a few months on average, and then we fold it into the fabric of our lives into the new normal (this was not a cancer exhibit, so it was strange to see that language). That seems very true, from my experience. I learned how to have epilepsy, and fold that into my life, pretty fast. I learned what it meant to be unable to walk. I had night terrors for a year, but then I faced my fear and lived a normal life, outside of the arthritis and the notion that driving a car will never be a recreational activity for me, not a right but a privilege and a necessity. I learned how to be bald, how to feel old, I used my decades of experience in ignoring people's comments about my looks, no matter how complimentary they were intended to be. I learned these things and I came out on the other side, still myself. As I've said before though, when you're looking for yourself who else do you expect to find? There's no one else there. This is not resilience or inspiration, this is the way human beings and all animals are wired. We survive because the alternative is not much of an alternative, and we know it.

One point in the evening stood out as the comic relief we all needed. There was a raffle to win this bag of gifts. The MC kept calling numbers, and no one stood up. This went on for almost five minutes until someone finally got the prize, and everyone laughed and clapped. But while we were waiting to see if this was all just a big joke, I turned to Gabe and said, "hey, this is the cancer raffle! There are no winners!"

And that's the truth, but we laughed about it anyway.

Day 218: It's All Over but the Shoutin'

This day has finally come, and it feels so anti-climatic in a way. For months when someone asked Gabe how he was doing, he would say, ask me in mid-December, or ask me in January. And now here we are, December 10. Shouldn’t there be fireworks? When you see me walking down the street, shouldn’t I have that glow like pregnant women do? Shouldn’t I get something, some kind of a prize? I guess not, since there’s no guarantee I won’t be doing all of this again at some point. And all of this was a hell of a lot, and I realize now I was so anxious to get it done that I didn’t give myself any breaks. I found something strange in my breast and went to the doctor the next morning. He told me he was 99% sure it was nothing but gave me an ultrasound order just in case, and told me I could wait to have it done. Six days later I went in for the ultrasound that ultimately turned into a core biopsy and a cancer diagnosis the next day. A month after diagnosis—the earliest date possible—I had surgery; 19 days later I had surgery again; 2 weeks after that I started chemo and 8 days after chemo ended I started radiation. No rest for the weary, right? I wouldn't change a thing though, as I ended just in time--it's been cold and snowy here already, and we are set for single digit high temperatures next week after a big storm this weekend. I'm so glad I won't have to go out every morning to burn myself in that weather.

I actually did get something today—the ladies who did my radiation cheered for me and blew bubbles, as they always do when someone “graduates.” I really liked the people who did my radiation, and it’s a little strange that I won’t be seeing them every day anymore. It’s like some kind of Stockholm syndrome, but the captors were actually nice people. I had the same main tech for the first 28 treatments, and the assistant was one of three different women. This last week for the boost I was in a different, colder, more sterile room (the “dungeon,” they call it) with different techs. While they were still very nice, it wasn’t the same as the women who complimented me almost every single day on my clothes or my shoes and told me stories about their kids every day for six weeks. As if I was a normal person, a woman, not a cancer patient. My main tech gave me a big hug as I left. It must be a strange job.

It’s just so hard to believe that I’m done with cancer treatment. No drugs, nothing left for me to do but wait and get mammograms all the time and wonder if every strange pain is stage IV cancer. Bubbles or no, no matter what anyone says, life doesn’t change all that much. I will still make dinner and do laundry tonight, and there will be no huge life or career changes, no trip around the world, no new love affair, not even a drumroll. But wait, what did I write a minute ago…I’m done with cancer treatment! You hear that? Done! Take that!

Maybe instead of fireworks I could be my nerdy self and do some math, take stock of the situation. I can do that in conjunction with using my least-favorite cancer metaphor of the “war” or “fight” on cancer. Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

1 core needle biopsy
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

Who won? Well, it’s hard to say. Over the last seven months I have lost the following, to varying degrees of severity, duration and permanence.

My:
hair, mucous, sweat glands, ovarian function, fertility, menstrual cycles, sex drive, chunk of the left breast, 5 lymph nodes, a bunch of nerve endings, ability to eat, ability to sleep, nice peach color on the left side of my chest, unmarked body (damn tattoos), use of one of the veins in my hand, ability to nurse my infant son, ability to have sex without lube, youth, potentially my identity-forming hair color (is it red? Is it brown? It had BETTER be red), a few of my friends and some of my self esteem.

I have kept a lot of things as well. I have always been able to think and remember, as I never had chemo brain. Therefore, I could write this blog. Radiation hasn’t affected me in any severe way and I believe the burns will be quite temporary. I maintained my complexion, skin color (except the parts that were radiated), original body weight and overall figure. I didn’t develop neuropathy. I never looked particularly un-healthy and my energy level has remained amazingly high, if I do say so myself. I had those times in the brutal months of chemo when I felt like I was sub-human, and yet I walked almost every day for an hour. I kept most of my friends and even found that people I didn’t know that well wanted to do something to help me.

I had a ton of support, but a lot of loneliness too. A lot of living inside this still-working brain.

I kept my sense of self, and my roles in life, for the most part, though everything seemed different. I worked full-time for 5 of the 7 months of my continuous treatment, though I did telecommute at times. Seriously, when I look at the list above, I wonder how I had time to do anything but cancer. How does anyone? And yet everyone does their normal things, for the most part. I was still mom, the no-nonsense one, the one who doesn’t take shit, but I was sick mom, bald mom, somewhat scary mom, at the same time. I was still married to someone who was crazy about me, but there was distance there at times, especially during chemo when he was terrified he would get me sick if he was too close to me, and I would die. When I wasn’t in the midst of the worst parts of chemo, I cooked and cleaned, and all along I hung out with people and made jokes and tried to walk around bald like it was no big thing. I kept my sense of laziness and lack of interest in what people thought right until the bitter end. I remained the pissed off somewhat cranky person who doesn’t like to be told what to do that I have always been. I was still a daughter, sister, friend, neighbor, still a stranger. I was still me, so it seems.

And yet …and yet. Things just changed. Some things will never be the same. I’ll have this fear of recurrence, and this responsibility, to check out everything that happens to me, for the rest of my life. I’ll have the knowledge that the “rest” might not be that long. But ultimately, I think if I could choose one thing that I wish I had never lost, it would either be my old sexuality or the ability to sleep. Isn’t that funny? Not the breast, or the hair, the eyebrows (those are coming back! Along with the lashes. I’m on my way to looking halfway normal someday). Those things seem less important. You can say it’s frivolous, but I wish sex was as easy and awesome for me as it always was, because now I know what it is like for many women, and now I know how special it was, that thing that I had, and it was mine damnit, not Gabe’s or anyone else’s, and while I haven’t entirely lost it and I still function normally under the general definition, I still wish I had it back. I also have not had a decent night’s sleep since April, for various reasons. I still have hot flashes all the time (I had one during radiation this morning), and the other night I had five an hour again, and was so desperate for them to stop that I lay in bed crying. It’s possible that menopause will reverse for me and these things will come back, especially the sexuality part, but the sleep probably never will. Just as no mother ever sleeps so lightly again after her children are born, just as I have never slept soundly since breaking my hips meant lying on my side for more than a few hours would be painful, cancer makes your mind race in ways that makes sleeping soundly a challenge.

There have been things that happened that were too painful to write about in the blog at the time that they happened, though now I see them more as chronicles of what chemo does to a person than something personal that happened to me. Two things come to mind:

The first time we had sex after chemo, at my insistence since I wanted us to be normal, I vomited afterwards. It was just too much for my body to handle. I still had a high sex drive then, and the experience itself was normal too. I just felt so sick afterwards, I could barely stand. Now, I know how it touched people to read about Gabe shaving my head. At that point, we had already had some memorable times of warped emotional intimacy, as evidenced by him standing naked in the bathroom talking to me while I puked after we made love. Talk about fucked up.

Another time, I took off what I thought was a piece of food from one of my teeth while I was brushing. It was actually a big piece of my gum. I had to go to an emergency dentist visit for that one. It turned out to be fine, and the gum eventually regenerated, but I was so disgusted, I almost quit chemo right then. At those two moments, I really did feel at war with myself, that my body was rejecting itself, and that is a feeling that is almost impossible to explain to someone who hasn’t been there. I had been there before—why can’t I walk? Why did they have to call in counselors to explain to other kids about me writhing around in convulsions on the floor?—but when I was younger and I didn’t yet know that it was possible for your mind to just not accept what was happening to you.

I have accepted all this, as everyone does. Look, it’s not about strength or moxie or bravery or resilience or anything else. You aren’t given a choice so you do what you have to do—just about everyone in this situation does. But as an adult, you have this nagging sense in your mind that doesn’t accept things. When I was a kid, I just took everything in stride. I didn’t know enough of the world to know different. I looked at today, and that was it. It’s hard to do that when you’re grown, especially when so much of your sense of your own future is wrapped up in your children’s future. What do I need to do to remain as highly functional as possible? To be a good role model of a responsible parent for both my kids, to show my daughter, and hell my son too, what it REALLY means to be a woman, in spite of what society says? To take away from Gabe the difficulty of thinking about how a motherless family would look, and go through what I need to go through to make sure the kids would have what they needed if I wasn’t around? How can I be realistic without being morbid? How can I give others permission to not behave the way everyone thinks you should behave when some bullshit happens?

I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit.

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.

Thanks for reading.

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.

Day 8

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.