Friday, April 8, 2011

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.

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