Day 740: Walking for Breast Cancer...Every Day

Yesterday, our family participated in our third annual Beverly Breast Cancer walk. Though we had lived in the neighborhood for years before we walked the first time--five days after I was diagnosed with breast cancer--we had never participated. I didn't know I had cancer when I signed up the first time. I do remember saying something to Gabe like "well, I guess it's good we're doing this. You know, just in case," after I felt the lump in late April. I didn't realize then what was coming, of course. My mom joined the four of us (Augie wasn't even a year old so he was in a stroller, but I honestly don't remember whether 4 year old Lenny walked or went in a wagon) and we did the three mile walk in our neighborhood, literally in a daze. The day before, I had nursed my infant son for the last time. I made Gabe take pictures so we would have that to remember, but I was so sad about what we were losing, and why we were losing it, that I hardly even remember doing it. So, during the walk on Mother's day in 2010, I basically stumbled all three miles, trying not to cry. The whole thing was awful. All of these people were laughing and waving pink flags and talking about saving the tatas and all I could think was that I was going to die. And that someday my kids would join that walk carrying a sign in my memory. I just wanted to disappear.

Last year, things were obviously a bit different. I looked very different, for one. I had hair, but not much. I was done with cancer treatment, not just on the cusp of starting it all. We had a team of 15 or so. Gabe was more emotional than I was--he was edgy for days beforehand and got choked up at several points during the walk, which didn't happen to me. I felt kind of...verklempt, I guess you could say, when I picked up my pink carnation from the survivor's tent. It started wilting before we even got home. People need to think these things through.

This year, things were different still. I was kind of looking forward to the walk, since the route went straight past our house and we planned to have a little party afterwards. We were supposed to have 23 people or so on our team, but there were some injuries and other issues and we ended up with 15 again, and a dog. The walk didn't seem so insufferably slow, and it was a beautiful cool but sunny early morning (south side Catholics, man, make us get up for this kind of stuff super early so everyone can make it to church), and it was kind of...fun. I wasn't really expecting that.

I bought a sign for our lawn and had my name inscribed on it. I didn't tie pink ribbons around any trees or write "survivor lives here" in pink sidewalk chalk. Shit, Gabe even forgot to mow the street-side of our front lawn. A friend who was on my team made these great signs that said "katydid cancer. now she's done" and people took turns carrying them around. I got some interesting looks when people realized the woman on the sign was me. I now have one of these signs in my lawn (still unmowed). I didn't get emotional at all, and amazingly, neither did Gabe. Afterwards, I did something I rarely do and actually put two of my friends to work in my kitchen cutting up fruit while I heated up the quiches I had made, fried some ham, made coffee, and got out the bean-corn-avocado salad and the chocolate chip banana bread, not even feeling embarrassed that all of that homemade goodness was sitting next to three store-bought coffee cakes and a cooler full of beer and Mike's hard lemonade...at 10 in the morning.

Then chaos ensued, and the kids played outside for literally five hours. I don't even know how they were still standing at the end of the day. The moms at the party didn't move from our mimosas or coffee or beer. Dads were put in charge, which meant that of all the things the kids could do, they settled on riding plasma cars down the steep hill of our cement driveway until they almost killed themselves on the pickup truck parked at the bottom, and the dads stood there nodding and talking about whatever dads talk about. No one got injured, though Augie and a few other kids did go flying off to the side into the bushes. I just kind of shrugged, thinking, huh, he'll live, but I also got livid when I realized Gabe was calmly CLEANING CHAIRS when Augie was off wrecking havoc somewhere and I was supposed to be off-duty. Then all the dads went to the park with the kids and we moms just sat there in the sunshine. During the 30 minutes the kids spent indoors, they destroyed the house, but I didn't even care. Gabe cleaned up most of it, I went for another, faster, walk, and then Lenny helped me plant impatiens. After that, I took a nap and woke up at 7 pm in time to read the newspaper while Gabe gave the kids showers, before we both put them to bed.

Ah, Mother's Day.

Sounds idyllic, right? No matter that Gabe and I got in a huge fight over nothing the night before, though I'm sure no one at our house could tell that. We were over it, I guess, though I'm still pissed that it happened, because the last few months have been so ridiculously emotional with everything that has happened that I think I should be spared all elements of marital strife. The mammogram, the show, the two year cancerversary--I was like a twig about to snap. Then, I spent my third mothers day since I found out I had cancer walking around my neighborhood to support something I would rather not think about again. Some people get breakfast in bed. I get a huge dose of reality, room-service style, served up to me every mother's day.

Now, don't get me wrong--this walk is meaningful for me because it supports the small local hospital where I did radiation every day for 7 weeks. I would have had a hell of a time if I'd had to commute to a large research hospital to get decent care. It takes longer to undress than to do radiation itself, so the shortest commute is almost a necessity. The radiation oncologist at this place is absolutely excellent, and he has a decent bedside manner to boot. They had that nice spa service while I was doing treatment there, and I got free massages and pedicures for months, which was a great bonus and a nice way to have some "positive touch" while my body was being burned and fatigued. And this hospital could use the money, where the big ones kind of have it coming out of their ears. And it's nice to see everyone in the neighborhood where you live supporting your struggle, even if it's just on the surface. The local Starbucks had a tribute to women with breast cancer and a few folks put my name on ribbons that were displayed in the shop, and I don't even know who did that. Things like that are actually meaningful, much more so than all the damn pink in our culture. The Starbucks thing is also funny, because all of my "names" were there: Katy Jacob, KatyDid Cancer, and even "Katy Sterritt." People will say "but your name isn't Katy Sterritt." Look, I know who they're talking about. Gabe isn't Mr. Jacob, after all, and he always answers to that without an issue. One of our babysitters said to him, you must be Mr. Jacob, and he said, well, I suppose you could call me that. And then we left.

Choose your battles, if you have the opportunity to choose them.

Sometimes, you don't. And you fight a battle that isn't a battle and you fight something that isn't a fight but that's what people call it. It's a disease, and it kills people, 40,000 women in this country every year, and it forever changes the lives of those who are diagnosed with it and are lucky enough to survive. It makes you suffer and it makes you afraid. You walk three miles, something you do every day, and your breast hurts because it always hurts. Your arm pulls because it always does. You are just trying to walk and eat pastry and yell at your husband and put your hand over your eyes when your kid does something crazy and live like everyone else. It doesn't feel like courage, and you don't feel like a badass. The best case scenario is that you feel kind of...normal.

Just kind of, not entirely normal, because people are telling you they are happy for you, and it's your face up on that sign, and your 6 year old daughter knows all about the hospital the walk is benefiting and could tell you all exactly--EXACTLY--what radiation is. You look like everyone else on that walk, you are all wearing the same shirts and your hair is long enough to let you pass, and it's possible that no one would "know." But what is the point of that? So you walk to the survivor tent again, relieved that someone had the sense to opt for ribbons instead of flowers. You are shocked and saddened to see so many pink ribbons, and to realize how many women are walking around who are just like you. A man asks "so who is the survivor here?" and you raise your hand and he tries his best not to suck in his breath and he tries unsuccessfully to hide his surprise because, you know, you're young. And those adorable little children belong to you. And he knows that it's bullshit, because he must love someone who had breast cancer or he wouldn't be working the tent, and he asks you how long. "Two years," you say, somewhat surprised to hear those words come out of your mouth and realize they are the truth. He gives you a high five. And then he looks at you a little longer than he should, and he says...

"You look great."

Because that is just what people say. And something has shifted in you, because it doesn't even bother you. You smile and say thank you and walk home, representing for breast cancer, because that is what you do every day that you can still walk around.

Day 348: Katy Pimps Breast Cancer

Again with the misleading blog title! No, I am not really pimping breast cancer, but I am also way too busy with a crazy life right now to write a substantive blog, so instead I want to plug the one and only breast cancer fundraising event that I am committed to join. Last year for the first time I walked in the local breast cancer walk in Beverly on the south side of Chicago. The walk is always on Mother's Day. I signed up well before I knew I had cancer, and the walk took place just five days after I was diagnosed. I barely remember it. I think the next day was the last time I nursed my son. That whole week was a nightmare.

And it didn't occur to me then that I would be a direct recipient of the funds raised for that walk. The event benefits a local hospital, Little Company of Mary. They have built a very respectable cancer center there, especially for such a small hospital. In recent years this walk has enabled the hospital to buy a new mammography machine as well as new radiation equipment. I did radiation at this hospital, and I used all of their radiation machines, including the CT machine, at some point. The people were very nice and professional, and apparently the radiation was done very well, because I developed no long-term skin or muscle issues from it. The doctor answered the phone himself when I had a question and I never had to wait for an appointment. It was that doctor who helped me through mastitis when I couldn't get to Northwestern. I really believe it saved my sanity (and being able to go local for radiation saves a lot of people their jobs) to not have to travel for hours a day, every day for seven weeks, in order to get to a quality cancer treatment downtown or on the north side of Chicago.

We need more institutions with good services in traditionally under-served areas of metropolitan communities, so I encourage you to support this event, either by walking with or donating to my small team if you feel so inclined. To do this, when you go to the following link, you can either go to register now and click "join a team" and look for the team KatyDid Cancer, or you can choose "sponsor walker" and search for Katy Jacob. You could obviously just donate to the walk, join another team, or walk by yourself without tying it to me or my team at all.

http://www.beverlybreastcancerwalk.org/register.html

To me, this is very different than the walks or events that somehow "benefit breast cancer research" or that benefit large organizations that need to put fundraising dollars back into marketing or overhead buckets of their budgets. This one is very specific, and in my case, it is very close to home--literally and figuratively.

Last year I remember thinking that in May 2011, I would be bald, or that I might not be around at all. Neither or those things are true, and now I will be one of those women who is honored at the walk, for better or worse. So I will feel honored, though not happy, and I will be walking with some very cute little redheads. Maybe we will see you there!

Day 5: Mother's Day

This is definitely not the mothers day I was expecting. We spent the morning at the breast cancer walk in Beverly with 10,000 other people and I found myself wondering how many of these women were like me. I’m glad we went, but it was yet another surreal experience for me to cap off the week. I still look completely normal so I felt a little invisible in a strange way. But maybe that’s good-- I don’t want to be one of these “honored” women, you know? In memory of, in honor of, all those women on those signs would like that to be someone else. Well, that’s not true—they’d like it to be nobody else. Anyhow mothers day has been as good as it could be in light of the circumstances—beautiful sun, homemade cards from Lenny, and Gabe remembered to get me a bunch of presents. But I forgot to get my mom anything for mothers day this year, and it doesn’t seem too special to get out of all the childcare and domestic duties for a day when I’ve been ignoring those things for days now.

I can’t wait until this visit with the surgeon on Tuesday morning. I feel like I’m losing my mind. I’ve lost more weight, hopefully because it’s hard to eat and I’ve been taking two walks every day rather than the alternative reason. I have a 15 page questionnaire I need to fill out before the surgeon’s visit and they ask you these questions about whether you sleep adequately, have stomach problems, have an appetite. I’m assuming they mean BEFORE you were diagnosed with cancer? Because until that appointment happens, I am just crawling out of my skin. I can’t sit still and I want to distract myself all the time.

See, I don’t think I’m reacting to this the way you’re “supposed” to react. I don’t feel a business-like “let’s take care of this,” nor a “bring on the fight!” attitude coming on anytime soon. I’m not in denial, because that’s been taken out of the equation. Every moment of every day I’m aware of this cancer. I go about my day and do some normal things, but I get weepy and terrified at various intervals. Other women who’ve gone through this say it’s hard to breathe. I can breathe all right, but it hurts. It’s like I can feel everything happening in my body, every twinge is amplified, and I’m aware of things like walking, breathing, swallowing.

So is this normal? I would say not—cancer is, by definition, not normal. Abnormal cells, abnormal life, at least for a while. But as I said before, the world keeps spinning. Last night my mom babysat so Gabe and I could go out. We went to my friend’s wedding, which I had planned on going to by myself because we couldn’t find a sitter. But I couldn’t handle going alone. The thing that gave me the courage to go (I haven’t been around many people at all since last Tuesday) was that due to my current 115 pounds, I could fit into this skintight black dress. Where the hell else am I going to wear that? So we went to the wedding ceremony, and I told Gabe I didn’t want to stay for the reception because I didn’t want to have to talk to people.

I don’t think I’ve ever cried at a wedding before this one. It’s not because weddings aren’t sentimental, or that I’m not thrilled for people, but just because I don’t cry. I cried for a few minutes at my own wedding when my brother read the poem he wrote for us, and that was a surprise. Gabe cried the entire time, basically start to finish. Anyway last night was so hard for me. The only other person I knew at the wedding survived a different type of cancer 8 years ago, and she sat next to me and it was great to see her looking so great. And I was happy for the couple and the ceremony was beautiful, and yet I kept having these thoughts like “I’ve only been married 5 ½ years!” or “don’t say till death do us part” and all this other morbid shit. I think you’re not supposed to admit to having those thoughts. People tell you not to, to cut it out. But come on. There’s no way around it until you know what you’re dealing with.

Afterwards we got some middle eastern food, and I think I picked the perfect restaurant. It was very casual, and there we were in our wedding clothes, but no one else was there. So when I started crying in the middle of the chicken shwarma and Gabe had to come across the table to console me, there was no one there to notice. After that, we went to see Iron Man. You would think this would be a perfect mindless distraction, and for someone who loves mindless action movies, it was—for the most part. But you know how when you’re pregnant, every show on TV is about horrible things happening to pregnant women or babies? Here I am at Iron Man, staring at the screen through all the scenes where he talks about the poison in his body, his worries about celebrating his last birthday, or relying on science to save his life. For the first time since last Tuesday I really started to think about this enemy in my body, this alien I have refused to touch or let anyone else touch. But it IS me, it’s my body turning on me, and how does that happen? Where’s that new element to fix me? On the other hand, I was feeling good that my dress was just as tight as Scarlett Johannsen’s and while I don’t have that figure, I was pulling it off for a change. Not that I’d wear mine to WORK, but still. Besides, for a while anyway, I’m still a natural redhead (can someone explain to me why Gwyneth Paltrow starts off the movie as a redhead and then turns blonde as soon as Scarlett’s redhead character comes on the scene?).

I’ve talked to a few other breast cancer survivors this weekend, and that ‘s been a mixed bag. I think what’s helpful for me is the practical advice: don’t listen to people who tell you that losing your hair is no big deal, get chemo on a Thursday so you feel better by Monday, do radiation closer to home if you have a choice, and, interestingly—don’t talk about it if you don’t feel the need. I just don’t know if I’m going to be a support group person. I remember a woman I knew who went to group therapy for years due to an armed robbery (she wasn’t hurt). OK, I’ve been the victim of armed robbery twice, once at gunpoint, once from a bunch of kids with bats while I was with my 7 month old daughter. The second one was much scarier since my kid was involved. But we were fine, so therapy? No thanks. I think therapy and support groups are great, if they can help you move on with something rather than stay with it. Sometimes my biggest fear is that I will stay caught up in this thing, thinking about it all the time. I like talking to people who have survived cancer when I have some other reason to like those people, you know? It’s like making friends with people who have kids that are your kids’ age. It makes sense, and you have that in common and you can talk about it. But god help me if I try to be friends with all kinds of parents of babies and preschoolers. I’m a cranky old lady on the inside, remember.

Stoicism is underrated. People talk about strength, courage, etc., with breast cancer. But what the hell are you supposed to do? You’re not going to keel over right now, so you have to do what needs to be done. Is that bravery though, or just realism? Remember Heath Ledger’s character in Brokeback Mountain? As an aside, did anyone actually read that story before the movie came out? It’s one of the only depressing-ass Annie Proulx stories I like. It is hardly about the cowboys’ relationship at all. It’s really about isolation—the isolated landscape, the inability for Ennis not just to admit he’s gay (in the story I felt like that was the least of his issues) but really to talk to anybody. And yet that’s what I liked about him. Ah, to live in a society where we could just keep shit to ourselves and not talk about ourselves all the time. And yet what am I doing? Writing this damn blog. I get as sick of myself as I get of other people.

On that note, one of the things that has helped distract me is to pay attention to how different people react to this news of mine, and what that tells me not about their relationships to me but about people in general. It’s easy on a day to day basis to feel that your closest friends are by definition your oldest ones, or the people you see the most often, or the people you can talk to most easily. But in a situation like this, closeness is almost irrelevant. What matters is how different people can do different things and fill in the painful gaps you can’t deal with yourself.

For example, until Friday I had not talked to anyone on the phone except my doctors, mom, brother, and oddly enough my ex-boyfriend whom I haven’t seen in two years. I spent the first five minutes on the phone with him convincing him this wasn’t a scare—I’m not going to find out this is a cyst, this is the real deal. Holy shit, right? But it was great to talk to him, after all this time. He said some things to me and wrote some things to me that remind me of an older, maybe more basic version of myself that I forget about with all this motherhood stuff. But I hadn’t been able to talk to anyone else.

So on Friday I was home by myself with the kids, off of work. I was home “working,” on Wednesday but the kids weren’t with me and I had a million phone calls to make to doctors, my HR department, my boss, etc. If I broke down sobbing there was no one to see me. My mom came over in the afternoon, so I was only alone for a while. I felt better on Thursday. Then it all came crashing down on me.

Lenny was playing in her room all morning and Augie took a nice 2 hour nap. But I was just breaking down all the time and I couldn’t stand the thought of Lenny seeing me like that. She could probably deal, but I didn’t I didn’t want to have to make her feel better about my reaction. Is that selfish? I called Gabe and asked him if he thought it would be horrible for me to see if our neighbors were home so I could dump Lenny over there and lose my shit for a while. I didn’t want to make that phone call. He told me to do it. So I did, and I realized I didn’t know how to have this conversation. We’ve been friends with these people for years but this situation is kind of outside the scope of conversations we’d have. He said “so how are you guys doing!” and I thought, huh, does he not know? I asked him and he said he did but couldn’t talk to me about it. Honesty! I appreciated that. So I just asked him straight out—I know you’re busy and you have all these people coming over but I am losing it and I don’t want Lenny around me so can I bring her over? Uh sure, bring her right over. No problem.

I got the baby in the stroller and headed over there. I realized on the way over I forgot to feed Lenny lunch, and I didn’t even care. How’s that for a good mom? So I dropped her off and there were these kids there she didn’t know. She was sobbing. I handed the baby to my neighbor, picked Lenny up, couldn’t figure out what to do. He’s looking around like what the hell is happening here, and I realized, this situation is so crazy and awkward and I’m asking a lot. My daughter is miserable, she’s hungry and she’s the only girl, this leaves my neighbor with 4 kids to watch, but you know what? I had to do it. I left, gave my cell phone number, walked out the door and started sobbing as soon as I got to the sidewalk. At that point I knew I made the right decision, but it was hard for me. When I picked Lenny up my girlfriend was there, nervously talking about normal things the whole time while I sat there in a daze, and I realized again how hard this is for people. But I also realized that I could phone in that favor and people would do what they could do, and that would mean different things. And at some point I’ll need it all.

I’m writing about this situation because it was the first time since I found out I had cancer that I asked—in person—for help from someone outside of my family. I had emailed my other neighbors and asked for help taking Lenny to school for a few days and emailed back and forth with some old friends about getting together soon. But I hadn’t confronted any cracking voices, denial, nervousness, etc. Our next door neighbor did come over to borrow something last week and I told him it was ok to talk to me. But this time on Friday I had to admit to my own breakdown to someone who didn’t know what to say to me. And after making that first call I knew I could ask again. So I called another neighbor, a friend whom I haven’t known that long but who I thought could talk to me without breaking down, and could talk to me about me having cancer. I needed that.

I know that some people are very emotional because they love me, or because that’s just how they are. And it doesn’t mean that people who aren’t emotional don’t love me, it just means they’re different. But I can’t handle emotions right now. So that measured conversation was important to me. And sometime I will need that emotional friend, or the friend I’ve known since I was 7, or that person who will act like they don’t know anything different about me, or someone else.

It makes me realize that we set up a lot of boundaries with people based on what we think friendship is about. Is the person the same age? Gender? Same family situation? Do you have a lot in common? Does he make you laugh? Can you talk to her about your deepest fears? Do you remember the same songs? I mean, does any of that shit really matter? I think the question is, does that person care about you or like you, or did they at one time and they can remember what that was like? And is it really any of your business why that is?

So for those who have or will have ignored me, reached out to me, called me to say you love me, avoided saying you love me because it’s too painful, talked to me about cancer, talked to me about anything but cancer, watched me cry, held me, watched my kids, run errands for me, distracted me—thank you, and I get it. I would never judge people based on their reaction; I have no idea how I would react to such unexpected news. But I would do something, which is what you have done for me. I really hope I never have to return any of these favors because I hope everyone I care about is happy and healthy all the time. But you know I will. In the meantime, Happy Mother’s Day.