Day 156: Starting the New Normal

For the last few days, I've felt almost normal. I even forgot to take my beta blocker yesterday, to no apparent ill effect. I've been taking allergy medicine for the reaction I was having to taxol, including this mysterious rash on my ankles and feet that I was at first convinced was bedbugs. (I thought maybe bedbugs were like mosquitoes and they all just flocked to me, ignoring everyone else, including Gabe, but I'm told that's not the case.) Everything seems to have subsided. So while I'm tired, I am starting to understand what everyone is talking about when they mention the new normal.

Because it isn't like it used to be. We went out last night, and I saw Gabe sing karaoke for the first time in the 7.5 years we've been together. He was careful to pick very cheerful songs, including You make me feel so young. There was a guy at this place celebrating his birthday and he was singing Only the good die young. Gabe loves Billy Joel (not my favorite, I'll admit) so I said, that guy did it first! Gabe noted that it would be a party foul for him to sing that song.

Oh, right. True. We wouldn't have thought of that before all this started. I also ate a lot of pizza, way more than I've been able to eat for a long time, and I said something about eating too much, or worrying about gaining weight. Gabe said he wanted me to weigh 120 pounds again. Why, am I too skinny? Well, what did you weigh before May? Maybe around 119, 120. I guess that even though my weight loss is unrelated to cancer, below 120 is like my BC size. My size-2-ness must remind him that I'm different than I used to be, and "used to be" does not mean the things for us that it means for other couples. You know, some people say, how we used to be, and they mean, when we were dating, before we had kids, when we first met, when we lived in separate apartments, before we slept together, when we were young. For us, it means, before I had cancer, before my body became an enemy on top of all the other things that my body used to be.

Everything is a reminder, even when it seems like everything should be the same. I'm still bald in all the pictures, though my head is fuzzy now with translucent hair, and I need to shave my legs again. My left eyebrow is pretty much toast, but I've learned to use the eyebrow shadow from the cancer shop. Sometimes I stop and wonder why my boob is hurting. Oh, right, those surgeries. The ones that took out the CANCER. I remember when it was just a time of the month problem, which of course I don't have now, having lost my time of the month to chemo.

Sometimes the nerve pain in my arm returns, usually while doing something like driving. (Talk about normal--I drove to Indiana and back today, and had energy and could see normally and everything! and I still hate Indiana drivers!). And I do things like pick up both my kids, carry a bunch of apples or a pumpkin, push a stroller filled with groceries and babies, and I remember: I'm not supposed to do these things.

They used to tell women who had breast cancer that they could never lift more than 15 pounds for the rest of their lives. Even today, I have been told by some doctors to not even lift my purse on the left side. I am supposed to wear gloves to wash dishes, always put sunscreen on the left arm, favor it when exercising. All to avoid lymphedema, a swelling of the arm that could happen at any time when your lymph nodes are removed.

I hear these things and I just think, yeah right. 15 pounds? My son weighs 25. I'm right handed, so of course I pick him up on the left side. I walked Lenny to school yesterday and she fell, skinning her knee, so I had to pick her up and carry her the last block. She weighs 29 pounds. There are lots of dishes in this house. It's October, and the sunscreen has been put away except for the stuff I put on my face and my head. I'm supposed to lift weights and exercise in order to help stop the chance of a recurrence. But what, only on the right side? Just to look extra lopsided, or what?

I do these things anyway, with some measure of caution, since if I am going to live a while, which is fairly possible I suppose, I have to actually live. I've learned that lesson before--reminders are just that. If your liver is enlarged, you remember not to drink a lot. If bright lights hurt your eyes, you remember not to look into them to avoid having seizures. You don't know how to play video games, you don't dance at places with strobes. When it rains, your hips hurt. Your kids come out early because your body knows better than to try to deliver them at term.

So it is with this. People in crowds look at me and I remember I'm bald. That one's on me, I know. I wore my hair and a a hat to an event at Lenny's school the other day. We met a couple there; they have a daughter in Lenny's school and another one at Augie's daycare. I saw the dad the next day at Lenny's school and he didn't recognize me. I said hello, he looked at me strangely and I realized I just had a scarf on my head. Today, we made it apple picking, though we were too late in the season to pick our own apples. At one point an older man came up to me and asked how I was doing. When I said I was fine, I knew what was coming. Are you a survivor? Yes, I am. He started telling me that his wife just lost her hair for the second time, right after she was able to make her first appointment with the hairdresser. He said her lung cancer had metastisized to her brain and she had six tumors. She never complained, they never talked about it much at all. I said well, I sure have complained about chemo. He laughed--I guess it's no fun for her either; she sits in bed a lot eating cheetos because that's all she can tolerate.

There's one picture of cancer. A woman sitting silently in bed eating junk so she won't vomit, not talking to her husband, who clearly needs to talk to someone or he wouldn't be randomly accosting bald women in the apple orchard. And he said she was so disappointed--about her hair, she was so happy to have it back. I thought, she just couldn't tell you that it wasn't disappointment, it was terror, and it wasn't about her hair, it was about those brain tumors. I wanted to say, this is the last thing I need to hear right now, but I knew he needed to tell me, just like the owner of our favorite restaurant told us a long story last weekend about how he understood what I was going through because he had a scare with stomach cancer.

But a scare is not cancer, and your hair is not your brain, and looking and feeling somewhat normal is not the same as how it was back on May 3, back when I was a different Katy that people could relate to more easily. And maybe that's what I need to do--be more like that Katy, less focused on what's happening in this body of mine. Maybe, but maybe not. Perhaps being stoic saves some of those around you from the pain, but it doesn't seem that it helps those who are the very closest to you at all. Because then they need to be stoic too. And I am not married to a stoic man, and my kids aren't stoic either. I'm sure there are a lot of people who would rather not know the things they learn here in this blog, or who would rather see me with a wig on, or who are more likely to want to talk to me in January. In the meantime I think about these reminders, and I feel like I'm almost on the other end of cancer treatment, the part where I try and go about my business, my non-cancer business.

For now, I'm all cancer, all the time. At least in theory. I'm not working anymore. I've started the three week leave I need to take to qualify for short term disability. Once that's over, I might go back to work sporadically, or I might not go back at all until I'm done with radiation. I just don't know--I'm tired. I worked a mostly normal schedule for five months after diagnosis, while trying and often failing to take care of two little kids. For some women, work is a distraction from cancer. For me, I have two little distractions at home, and work--while it helped to feel productive, get out of the house, and take the train and interact with other adults--took me away from them quite a bit. Once my WBCs tanked and then I was in the hospital for my heart, I thought, what the hell am I doing? I need to be home and just get through this. Get it over with, plan some holidays, do some yard work, go to acupuncture without risking my life in cabs every time.

Ah, acupuncture, how I love thee. It hasn't helped much with these hot flashes, but I'll give it some time. And I've had a few massages as well, since taxol does such a horrible number on your bones and joints. The first time I went it was a strange experience. I've had many massages before, and I've had them from this same masseuse several times. This time I was so floored by the feeling of her hands on my back, my toes, my bald head, my tailbone, legs, my neck. I thought, this feels so good! Someone touching me in a healing type of way, without sadness, without fear, when for an hour my body could be a friend again, rather than an enemy. It's interesting how you are touched less with cancer. Fewer hugs from friends, more distance. I'm not the most affectionate person anyway, but again, it's a reminder. And Gabe and I have been torn from each other in some ways--sleeping apart, him taking care of me, me staying somewhere else when people are sick. I told him once that I thought he was much less affectionate since I got cancer (I never say since I've been sick--I don't feel sick. I feel like a person with cancer), or more specifically since I started chemo. It's because I'm bald, right? Because I'm unattractive now. He has convinced me to some extent that this isn't true, that he likes how I look bald and the rest of me looks the same (really? that slight dent in my breast, those scars?) but that he didn't want to bother me, to annoy me, or make me sick if he was sick.

I have never liked to be bothered. That's what's funny about the massages. I always hated back rubs. My mom and brother used to rub each others' backs and I would try it only to feel like I was crawling out of my skin. And boys, or men, would try to rub my back but as everyone knows, only for ulterior reasons and it always seemed to me like a waste of time when you could just get to the point. I like to spoon, until I am sleeping, then I want to be left alone. But I do love a massage, and even more so now, when I am alone so much more of the time. It's like prostitution in a way, isn't it? You don't have to give anything in return, nothing but money.

Maybe I won't be a new-ager after all, not with those types of comparisons. I'm laughing right now, thinking about the time when I went to chemo by myself, and there was a woman there who was sitting on the floor in the waiting room, bowed over like she was praying. Her husband was sitting on the couch with their bags, and a volunteer came over and asked if she was just meditating or if she needed medical assistance. She got up and said, I'm fine, I just don't believe in chairs.

I was hiding my face behind my People at that one, trying not to laugh. But then she was called back for her bloodwork and her husband came with her and I realized what was happening and I felt a pang in my heart instead. This was her first time. If it hadn't been, she wouldn't have brought him back for the blood draw. They came back a few minutes later and she sat on the floor again, head down. I felt for her, and wanted to say something about how it would be ok, but how would that sound coming from me, with all my chemo issues? She looked up at me and I was about to ask her if it was her first chemo (of course it was, she had a full head of hair), but then she looked down. I realize now I was like the guy in the orchard to her. A portent of bad things to come. Bald, by myself, reading trashy magazines, resigned to the routine. So I didn't say a thing. If it helps to believe in the floor, believe in it then. Do what you need to do.

The chemo nurse told me to bring my party shoes on October 18. I've been putting a lot of thought into that actually. There are deep cancer moments, moments of fear and faith and resignation. And there are those moments where I wonder if I should wear heels or cowboy boots, red or purple or brown, if my party shoes should be comfortable or impractical for that last chemo. After all, some people don't believe in chairs, I don't believe in ugly shoes. Until that day, and for many after that when I am doing radiation and everything else, I will continue my massages, and my acupuncture, and my allergy medications. I will keep up with my blog writing, pizza eating, laughing, bitching, lovemaking, sleeping, crying, hot flashing, and whatever else I'm still good at doing. And then, nine days from now, if all goes as planned, will be the last time I will need to go in that room and sit up straight in that chair in the waiting room and go through all the rest of it. I have to tell myself that, that it's almost over, that it won't come back. It goes through my head in a continuous loop. One more, one more, one more. Only one.