Day 274: The Great Snow

It would be hard to sit down right now and write something that is not about snow, as I'm a Chigagoan. We had the kind of blizzard the other day that happens rarely in a lifetime. It's the third 18 inch+ in 24-hours snow of my 35 years. The first was in 1979 when I was four years old. Though many people don't believe me, I remember walking to preschool--that's right, preschool was open--with my grandma, and I remember how the snow seemed almost taller than her and the drifts were definitely taller than me. It's possible that the preschool was snowed out for a day and I remember walking the next day, but that seems less interesting, and in truth, we all lived close enough to school that there was probably little reason to close since we could walk.

The next big snow was in 1999, 20 years later (so I missed out on snow days for my entire childhood--lots of big snows but none big enough to warrant school closing). My best memories of that snow also verge on the absurd. My boyfriend decided to try to get home from my apartment--I think mostly because he wanted to see if it was possible, not because he had somewhere to be--and he got the last train going downtown. At around noon. The CTA just gave up after that. I also remember dealing with the residents of my apartment building. I was 24 years old and worked full time, but as a second job I managed a 30-unit building for reduced rent. Boy, could I write a book about that. Anyway, folks were calling me, asking why we weren't shoveling during the blizzard (in 60 MPH wind) and complaining that they were snowed in, trapped. One guy was so insistent on this last point that I had to remind him: "our lobby doors open to the inside. You can get out." I wanted to say, can you just relax and realize that wherever you think you need to go, it isn't open anyway?

I could say that it's cancer that made me slow down this time and not panic about getting places, but in truth I've always figured that in a tempermental climate, weather sometimes just trumps. Sometimes life stops or is different for a span of time, and I didn't need cancer to teach me that, just the midwestern seasons.

This time, during the great blizzard of '11, I got home from work before all hell broke loose. Gabe didn't believe the forecasts, and I blame that on him spending too much time in California. I left work on Tuesday at 12:30, when there was not much snow on the ground but there was already crazy wind. Lenny almost blew over in the parking lot of her school. I got both kids inside safe and warm, and within two hours you couldn't see out of our windows. No matter, I sent Gabe to the store to buy some milk anyway since he was getting home in the middle of it. Through the drama that ensued over the next few days, we only lost our power for about 10 minutes, so it was actually relatively enjoyable for us. The storm was amazing to watch. We really did have "thundersnow." There was lightning, and huge thunder bursts, and the snow was moving so fast that it was horizontal, laying like sheet cake on our window screens. We would have lost every single item in our backyard to the wind if there hadn't been enough snow to keep them buried. Schools--that's right, Chicago schools--were closed for 2 days.

I have felt a crazy amount of cabin fever, having worked from home for the past two days with the kids here. I've been incredibly busy with work, and very frustrated for a variety of reasons as well. Cancer is not the kind of thing that was intended for young, working-age parents. But that's a different blog for a different day. I finally got out of the house last night by driving to water aerobics. Today it's almost 30 degrees, so I went for a long walk (I took the kids to school/daycare so they wouldn't lose their minds). I figured I should enjoy this now before the temperature plummets again next week and we sit in 5 degree highs for days on end.

This was a long introduction to the following statement: February is my least favorite month of the year. It's the shortest, but damn is it also the longest. When I was on modified bed rest for the whole month of February before Lenny was born, I just looked out the window from my bed, with my laptop on my huge belly so I could work from home, and thought about dread. And no, I don't mean I thought about things with dread. I thought about dread itself, because that's what February is like. You think you can see your way out of the cold, but it's dark and dreary and the snow turns black and your boots are worn down and your shovel is broken and the month just keeps going for what seems like forever.

So perhaps that's an explanation for my state of mind, to some extent. I am definitely feeling that post-treatment malaise, that indescribable worry. My back is hurting and I try not to think about it. I made the mistake of looking into the searches that bring people to this blog again (I love "my hair short" and "I want to look like GI Jane" and "can thin women with small breasts have a lumpectomy"). One of them was about triple negative breast cancer and liver metastasis. I was the fifth hit on that one, because of a blog where I talk about the fear of metastatic disease due to the aggressive nature of triple negative tumors. I poked around in the other top four hits and was sent to a site where a woman who was stage 1, triple negative, found out 2 years and 10 months later--after chemo and radiation--that her cancer had bypassed the breasts and gone to the liver and lungs.

This is my absolute worst nightmare, and obviously hers as well. So close to that three year mark! Stage one! Clear nodes! No matter. When people tell me these things will not happen to me, I just smile and nod. Of course not. Everything bad that happens always happens to someone else until you realize that you are someone else to everyone else but you.

Sometimes I think that having three tumors should be a problem for sure, especially since whenever I tell another breast cancer survivor that, she looks at me with wide eyes and says "three? wow." And I know she's thinking honey, you're doomed. But no one ever says that, because how could you? It's tough. I've had several dreams about my upcoming mammogram. The reality is that the BEST place for my cancer to spread would be to my breasts. It's the other stuff that would mark the end for me.

When I'm in the house too long and I feel isolated, or I'm not able to exercise enough to not think at all, that's where my mind goes at times. People talk about this being the toughest time of my life and say I will get over these feelings. I'm sure that's true to a certain extent, but it makes me wonder: is life ever really that easy? We want it to be, we need it to be, we even change our memories to accommodate that desire. But that doesn't make it true.

When I was 4, my grandmother walked me through the snowdrifts. Why? Because my mother had died due to internal hemorrhaging on the operating table after a hysterectomy a few weeks or months before, at age 29. She was resuscitated, they induced a coma, and after a long recovery, she is still with us today. But for weeks she was in the hospital, and I didn't understand. And for months she was in bed fighting to live. So my grandma came to live with us to help out, and that's why she walked me through the snow. Life is never easy.

When I was going through chemo and feeling guilty about how it affected my kids, my mom had an interesting perspective. She said she never felt guilty about missing out on things when she was bed-ridden because she knew she had to get better to take care of us later. No one worried that we would be traumatized or scarred for life. Was I confused, angry, scared, and all of that? Sure, but you know what, I also got over it. I don't believe I had any long-term consequences of that time from an emotional or psychological standpoint. I hope the same is true for my kids.

I think the worst part for Lenny was seeing me bald and knowing how I would feel after chemo. I don't think she ever thought I would die, she just didn't understand why things had to change so much. In the end, it probably helped her with math. 33 days of radiation, I just did my 25th...my four year old looks at me and says, 8 days left mom!

For Augie, being forcibly weaned was arguably the worst part. I never really wrote about what that was like in the blog, though I wrote about it happening. The experience was just too painful to describe back then. My daughter never nursed well but Augie and I had a great thing going there. He was excited and kicky all the time (it's possible that cancer lowered my milk supply and he got frustrated) but extremely efficient and happy at the breast. He had been in daycare for several months by the time I was diagnosed, and he was used to the idea that sometimes we went out at night and he got a bottle from a babysitter. But I still nursed about 5 times a day, and I think only once in his short life did he get a bottle first thing in the morning, when Gabe and I stayed somewhere overnight. Those mornings in early May after I was diagnosed, I refused to feed him the bottle. I just couldn't do it. It was the look he gave me that I couldn't stand. He wasn't angry, or sad, he was just confused. Mom, why aren't you coming in here? Why is dad here?

Because I have cancer, I would silently tell him. And that thing we did five times a day for months? Neither you nor I will ever do it again. It was impossible to be in denial about it in that situation, and I cry when thinking about it even now.

Sometimes I wonder if these weepy times of mine are hormonal, though I think they are definitely normal even if they are not. I've had that monthly glimmer of libido again, though my cycles seem pretty hell-bent on disappearing from my life. It's been five months since my last period and I'm starting to think that Gabe should forgo the vasectomy for sure. What's the point? I still have hot flashes and I still feel like a different person. I look like one too. Who is that woman with the short, dark auburn hair? Yes, I recognize that my hair is red, albeit dark, but there's so little of it that it's hard to tell. I recognize that it's no longer curly. I recognize that I'm smaller. Even when these statements come in the form of compliments, it's hard to know what to say. Yes, I know I'm different. I know there's no going back. What can I do? Rock the earrings, I guess.

It seems that Day 274 is another day for non-sequiturs in this blog. Again, what can I do? Sometimes that's how my mind works: I go from snow, to childhood, to metastatic cancer, to public transportation to womanhood and back again. On some level in some universe I do believe these things are related. Or maybe it's just because I live here, in this strange city.

To complete the random nature of this post, why not throw in another poem? I think I wrote this after the last big blizzard, but it's just as likely that I wrote it after a major heat wave. Either way, it's been about ten years. It doesn't seem worth trying to write something new, because for whatever reason I haven't changed my mind in this past decade. I'll leave you with that phrase Chicagoans always use: "Stay warm."

Choosing Chicago

Really you could live anywhere
occupy space haphazardly,
become worldly and acclimate
to different weathers,
fit your bones
to a more ancient wisdom,
be fluent in a cacophony of languages,
buy clothes for only one season,
drive,
see so much farther across horizons
that always remain,
or learn a new physics
through intricate knowledge
of inclines,
and you wouldn't have to brace yourself
and invent new hairstyles
when the cold or the heat
in their extremes
came rallying through,
you could be so much closer
to concepts
of land or darkness,
and there are things
in the world
you could know about
that would amaze you,
and you could write, then,
about having been
a part of them,
you could learn to
spectate anew
and be made better for it,
you could then remake
yourself continuously,
and choose, and choose
and always move on into
an infinite possibility
of destinations,
you could remember
how things were there,
and there,
you could become
so expansive
it would take years
to get the stories out.
You could, but you choose
to live here because
the love in your blood
requires it.

Day 259: Much Ado About Nothing

I am starting to understand what the new normal is all about. Just like with anything in life, cancer has become a part of the things that I think about, and I can't imagine that it wasn't always there. It's like that with kids, when you wonder what you did before they were born, though of course you remember perfectly well what you did, and it was normal too, but it just doesn't seem like YOU. I just can't relate to people who go through some life epiphany due to cancer. Life is full of so many things--things that need to get done, things that come up, that I don't know how I'd have time for any epiphanies. I don't think I've ever really understood the mindset of finding yourself. I remember once when Gabe and I were talking about how people go through that, and I said, I mean, who do you THINK you're going to find? There isn't anybody else there.

And that's the truth. You only get the one vessel, the one time around. Who else do you expect to be there after the dust settles? There's Katy, or there's not Katy, and those seem to be the only options for me. I'd like to choose Katy, please.

Cancer has just kind of melted into my life. That sounds strange, but it's true. Here's an example. I have been having some crazy aches and pains recently. My hips have hurt so badly I couldn't sleep. Now, I'm 35, and that might be one new reason right there. At the same time, I've just gone back to work, so I sit at a desk all day, which I haven't done in months. I wear heels--something I don't do at home (sometimes I think I like going to work just for the train, and the gym, and the shoes). And I am back at the gym, I started rowing, I'm still doing pilates and water aerobics and I work out at home. My body has a million reasons to be mad at me, especially with all the conflicting muscles from the different exercise routines I do. So I contemplate all of these things. And then I think, well, my hips hurt because of that "old wound", and arthritis is normal for me. Another minute passes and I think "Or, it's bone cancer." And then I say that out loud to someone, they give me all the other reasons for the pain, I shrug and keep cooking dinner.

It's just there, all the time, the way every thing else is there all the time that is your life. I never seemed like someone other than me because of epilepsy or my car accident, and yet I know I am who I am in part because of those things. I am still the same me as I was before kids and yet I feel that being a parent has changed me. I feel like life has just changed me, and cancer has just done it more obviously. Everything else is subtle. I think, for example, that I used to be really hilarious. Now I'm not UNfunny, but some of that got lost somewhere down the line, it seems to me.

Or maybe I just got harder on myself. Regardless, cancer did some obvious things--it took my hair, for example. People could see that change, so I couldn't hide what was happening, but is it really so different? I don't really know what I'm trying to say, except that while there's not much new related to cancer in my life, cancer is still here, probably to stay. If not in my body, then in my mind.

Now, mind you, it's there with its not so subtle reminders in my body too. About 10 days ago I started using the estrace, the estrogen cream I mentioned a few blogs ago. The purpose of the cream is for menopause-induced vaginal dryness. You use it every day for two weeks and then twice a week. It's worked for its intended purpose so far, but I also was convinced that it was helping with hot flashes. I had the only kind of epiphany I care too much about recently when last Saturday night I slept for more than six hours--WITH NO HOT FLASHES. Gabe was sick, so he slept downstairs. He came to bed around 6:45 in the morning, at which point I immediately had a hot flash. Ironic, no? So many nice things in life cause this horrible reaction: drinking coffee, having my husband snuggle with me, coming in to the warm house after a cold walk, eating a piece of chocolate. This time, I was actually thrilled when this happened because I realized that I slept all night without waking due to hot flashes! I can't remember the last time I slept more than six hours in a night.

Think about it. I've had terrible hot flashes since September. Before that, hell, until October, I had chemo-induced insomnia. Before that, there was the general insomnia brought on by, you know, worrying I would die from cancer. And before I was diagnosed, I was nursing a baby. So I think it has been almost two years since I had that much uninterrupted sleep.

As I said, these are the things that just melt into your life. I've gotten used to it. I will never get used to the nights with only 2 hours or less of sleep, but 4? I'm good to go then. Six is like an unheard of luxury. Gabe was trying to sleep on Sunday morning since the kids were not yet awake and I was shaking him saying, No hot flashes! I can't believe it! That cream is working on this too!

Pause.

Wait, is that bad? Does that mean I have too much estrogen coursing in my body? Will this give me more breast cancer, uterine cancer, kill me somehow? Is this the reason my legs hurt (not the million squats or lunges)--do I have a blood clot?

Another pause. Nah. Gabe was looking at me like I was nuts.

These thoughts are there, mixed in with the happy ones. I wish I could say that this cream is a miracle worker on hot flashes, but alas, I started having them again the next day. They are lesser in severity, and I have fewer. It could be the cream, it could be that I'm getting farther from chemo. But I know something about my hot flashes now, doctors opinions be damned.

I'm still having cycles. Not periods, but cycles. Everyone and their mother can tell me this is impossible and I don't care, I know it's true. I was feeling some of the other side effects of ovulation--a little bit of my old libido, stomach upset, a few cramps--on the day of my good sleep. Every month I have this few days where I tell Gabe or my mom that my hot flashes are getting better, and I happen to have these other symptoms too. As soon as I say this, the flashes come back. Just about every 30 days. So there it is. My body, my fertility, my woman's hormones are just not going silently into that good night. There's still something there, just a hint, a reminder. Don't forget about me! This is what your body is supposed to do!

Does this mean it's possible that my normal cycles and hormones will return? Who knows. It doesn't seem likely, but how much of this trip has been likely? Not a damn minute of it.

Sometimes I get overwhelmed thinking about recurrence, or metastasis. And other times, I get overwhelmed thinking about the lack of those things. If that was it--all that shit I did for breast cancer--and I get to live the rest of my life, to some normal old age, why is that? Why would I get to be the "lucky" one? What did I do to deserve a life other people never got a chance to live? I mean, I know I can't say that now--I haven't even gone to my first follow-up mammogram, much less made it to the magical three or five year marks, but even if I make it there, these questions are in the back of my mind. Not exactly survivors guilt, but a general questioning of the randomness of life.

It makes me think about how the only things that my oncologist has said to me that were remotely comforting weren't intended to be. He told me at the beginning that I needed to do chemo to lower the chance of recurrence because I was triple negative but also because I was young, and since I could have 50 more years to live, that's 50 years to have a recurrence. He also said to me once that the hope was that I would live a normal life span, unless there are other things that happen, other illnesses, accidents. The guy just couldn't say, we want you to live to be old. You have a chance to see your grandkids. He had to throw that death by other means in there.

But still, I came away from that with this small notion that it was possible. And if so, that is kind of incredible. Here I am, 35. I've built some kind of strange career for myself. I'm married. I have two pretty cute kids. As an aside, I need to throw this parenting moment in here. I have recently learned that my daughter will be playing Dorothy in the preschool Wizard of Oz play. My shy girl! The nerdy one who reads at parties! The one who just today in the car was talking to us about how she complains about eating, but she eats more than she drinks, and she went on to say "whereas Augie would not eat much, but he would drink until he was full." We went on with more of the conversation, but something was sticking in my mind. Gabe said it out loud: "Lenny, did you just say "whereas?"

I got to see that moment. I lived to see it. I lived through that car accident. I came through epilepsy relatively unscathed. I was reminded of that today in water aerobics when a young woman had a seizure in the pool. I was turned away so I didn't see it happen, but I saw two other women holding her up. In all my years with epilepsy, I never had a seizure in the water. I talked to her and her family and I realized how I've seen her for years at water aerobics, and this, like all things, is just a part of life for her too. You keep going and doing things you want and need to do. Sometimes a seizure is thrown in there and enough people pay attention and you don't drown. And after talking about it with some baldish lady for a bit you say see you next week and you go home.

It still makes me wonder though. Gabe has said that he thinks it's unfair how many things I've gone through. Sometimes I think it's unfair how many people go through these things and don't live to tell or just struggle so much more with them.

God I look back on this blog and it's just like some weird figure 8 of mental jumps and it truly seems like much ado about nothing. My mind is just so strange like that. If anyone made it this far in the blog, I would be shocked.

Since few people will be reading, I've decided to include a poem again, because I have actually written a grand total of one cancer poem now. (It usually takes me literally years to share a poem, thus my hope that no one is reading this thing I wrote two weeks ago).

First, I want to explain why I decided to write it. I like this blog because it is a physical manifestation of the way my mind works, and it's funny for me to go back and see the evidence of that. I also like how the tool--publishing on the Internet--brings in other moments of absurdity.

I can look at my blog stats and see what search engine keywords lead people here. I'm not doing anything to advertise the blog, so I'm not very high up on the hit list among the 100,000 breast cancer sites out there. But every once in a while people find me. My favorite search was a google search for "I feel like I'm doing everything halfway."

Some poor soul got sent to my "Halfway to Done" blog about being almost done with radiation. I love the illogic of that and I can imagine the look on that person's face when the link came up and they thought "what the ***?". More than anything, I love living in a world where someone feels that life is just too crowded, so they do a google search with that phrasing, and they end up being sent to a bunch of random sites, some of which might be on point, but at least one of which is a rambling blog with this bald lady in some weird pictures, and they read it anyway and maybe that even makes sense in some universe.

It makes sense in my universe anyway. The mind makes lots of strange associations. One person's attempts for perfection lead to another person's radiation treatments for cancer. Words lead to other words, life to other lives. That's really what this poem is saying. I know that if that's all I wanted to say in this blog, I could have saved all these other words and just cut to these crisp 144. But I'm still experimenting with what I called an exercise in vanity in my very first entry, when I couldn't imagine how day 259 would be, and that it would seem like day 2590 and day 2 all at the same time. Make sense? No? Maybe this will.

Reading a Poem in the Oncologist’s Office

The poet had written maestro,
But I read it as metastasis.

It’s possible he meant master,
But why not change in form, spread of disease?

They fall off the tongue like close cousins.
Perhaps music and suffering are not so far apart.

You might say that my mind plays tricks.
I’d ask you if death is not lurking behind our other words.

Life can be like that now;
Normal is a double-take into a dark place.

If someone says beautiful or brave
I know they are saying interesting or terrifying.

Poets could learn something
From this total loss of control.

How a thing starts is not how it ends.
Your intentions and your meaning are not the same.

Besides, who would question my interest in definitions?
Who would blame me for always reading the last line first?

Day 129

Another week, another group of days where I didn't want to sit down and write. A lot has been going on, some related to cancer, some not, and there's too much to get into here. I do have to give us a shoutout for going to see Disney Princesses on Ice this morning rather than watching the first Bears game of the season. (Unfortunately, we arrived at my mom's with enough time to see most of the second half of the game, including that horrific attempt to score from what, the six inch line? Four times? With nothing to show for it?) Lenny was just mesmerized by the entire event. We were smart enough not to bring Augie along. I don't think the United Center could withstand him. And I was dreading the idea of princesses mixed with ice skating and Disney merchandising, but every time I saw how entranced Lenny was I wanted to cry. She just loved it.

I'll tell you though, this crying thing is getting old. I want to blame changing hormones, but I really think it's just cancer. There's always mortality right in front of my face, regardless of how ridiculous the scenario is. Why do all the princesses DIE (sleep, get their fins ripped into legs, whatever) before they get to be happy? Why does every single one of them have waist-length hair (except Snow White I guess)? Why are these princes such morons? You know, the usual deep questions.

Breast cancer is always in my face too. On the cover of the Sunday parade, for instance. In Glamour magazine. Don't I just read that for fluff? I got pissed off at this article that was outlining myths about breast cancer. One is apparently that young women are getting diagnosed more often. Not true! It's been the same for 25 years! OK, is Chicago an outlier or something? Because to me it seems like this shit is everywhere. I was annoyed to find out that I am not only in the 5% of breast cancer diagnoses that are for women under 40--it's actually down to 2% for women 34 and younger. So whenever someone tells me the odds are in my favor and I don't act too happy, it's because of odds like that and the triple negative thing. Also, there's some nonsense in Glamour about how many women with early stage disease don't have to do chemo. Bullshit. Especially for young women--they seem to always want young folks to do it. Then the woman who runs the Komen foundation went on to say that chemo isn't as bad as it used to be. Something about how while some women lose their hair and some women feel some fatigue, life goes on as usual.

Some? Hey if there are women out there who have done chemo for breast cancer with no hair loss and fatigue, let me know, so I can buy some of what they've got. I've never heard of that.

I spent the week increasingly paranoid about this bone cancer issue, and I completely lost my mind on my medical team when I learned that my oncologist was canceling my appointment to see him right before my next chemo round Wednesday. I saw him to get my poison prescription back on Gabe's birthday on June 14, and since then I have seen him a total of one time. That time, I waited two hours and saw him for two minutes. I like the physician's assistant and all, but please. I am going through cancer and chemo and I'd like to see an actual physician to talk about it.

When I brought this up, I was told I would get to see him on November 24, and that did it. I should be done with chemo in mid-October. How does that help me? Several angry emails and phone calls later, including some calls to various people asking for a new doctor recommendation, and I got an appointment for Tuesday. I guess the squeaky wheel does get the grease. Now, who knows what this will mean. Will he be able to tell if my spine has a tumor? Will he be able to reassure me as no one else has been able to do that I don't have bone cancer? Will I be more pissed off than ever after waiting hours for this appointment and then getting five minutes of his time and no answers? Time will tell, I guess.

I am definitely not looking forward to the next taxol infusion. It really did hurt like the devil going in, and I worry about what that means when they reuse the same vein over and over. I've been losing more non-scalp hair, and I'm somewhat desperate to keep at least my eyebrows. You know how it hurts when one eyelash gets in your eye? This is like that, all the time. I'm even losing arm hair, which is no big loss since no one could ever tell I had any to begin with, but still. So far I have no neuropathy and my fingernails are in tact, and the bone pain, while bad for several days, was nonetheless not debilitating. The things I feared the most after the first taxol haven't happened yet, and I just want to keep it that way.

Otherwise, I had my first hospital scare this week. I've had horrible allergies and I thought that's what was going on this Friday. Both kids were at daycare (Lenny asked to go, since she's started doing kindergarten work at montesorri and LOVES it) and it was my day off, so I had all these delusions of grandeur. I went through a ton of clothes, getting rid of everything size six and above, and I went for a walk. I had all these other errands planned. And then I just felt horrible. My whole body ached, and I wondered how all but the spine pain go away for days and then return with such a vengeance. Damn taxol. Then I took my temperature. 99.5. Hmm. For someone with a normal temperature of 97 or lower, that was bad--not really, but it is for someone on chemo.

I called the breast clinic and they told me that if I got to 101, I would need to go to the ER. If I got to 100.5, and it didn't go down right away with motrin or tylenol, same deal. After much misery, I was scared to see 100.4 on our cheap thermometer. I guzzled some tylenol. No hospital for me, damnit. No putting off this chemo round just for some stupid cold. It went down, thank God. I normally don't complain about getting colds, but this time I was pathetic. It was such a gorgeous day, and there I was, useless, AGAIN. I'm sick and tired of being sick and tired, as they say. I would like to fool myself into thinking otherwise, you know? So that's what I have been doing to some extent--fooling myself. I went to book club last night even though I didn't feel good and I ate... a hamburger! From the grill! With charred carcinogens and everything! And I made brownies with homemade frosting and ate some! And I talked to people, successfully I hope, and then I...collapsed.

So here's to hoping I'm 100% better and I get to do chemo on Wednesday. Since I am more than halfway done, I thought it would seem like the home stretch. But it seems a thousand years until October 13 right now, and I'm losing my interest in writing about this stuff to some extent. To make it more interesting, I thought I might distract myself by posting some more musings on being bald. Here goes:

1. This whole country is obsessed with hair. Half of women's magazines are devoted to it. Since I'm bald, none of my time is devoted to hair. That might make me feel better if I had ever dedicated time to hair before, but still.

2. The advantages to being bald while female often relate back to other people's discomfort with it. For example, no one--no one!--will try to sit next to me on the train. I don't even have to put my bag down next to me. Someone will start to sit, look at me, grab their stuff and move on. People also don't talk to me in the elevator. But most salespeople are especially nice to me.

3. There are some definite social constructs around being a bald woman. For example, while I wouldn't say I've seen a lot, I have seen several bald black women walking around downtown Chicago. I'm not talking short hair, or a very short fade--I mean bald. And interestingly, I have never thought "cancer" in these cases. No one else seems to take much notice either. But the only white or Asian or Latina women I've seen without hair are within the confines of Prentice Hospital, in the cancer ward. I think that's part of what makes me so noticeable. What's up with that? I don't get it. The other day I was walking to the train and a very striking young bald black woman stopped me and said, you look so pretty! Well thanks, so do you, I said. I wondered if she thought I had cancer, or was just working it on purpose, as I think she was doing.

4. As the weather cools, my head freezes in the outdoors. I think the only way bald men can stand it is because they have more body heat in the first place or something. I get cold!

5. I officially can't stand wearing wigs. I wore one today to the Disney thing, and felt like such a fake the whole time. But again, in the winter, I might not have much choice.

6. I see how pretty hair can be a crutch. I try a little harder to look decent now. I didn't always have to do that before. If my hair was looking good, and it often was, I figured that was good enough. Well, now I have to do SOMETHING to not look like a guy. Note the pictures here. I am not trying too hard and I think I look pretty masculine, unlike my daughter who looks like such a GIRL even while making funny faces. Oh well.

7. Hats don't fit on this tiny bald head. They just fly right off in the wind.

8. There's really nothing interesting left to say about being bald, including the last seven things I've said.

There might not be anything interesting left to say about cancer either, but I imagine that's wishful thinking. Wish me and my spine good luck!

Day 124

It seems that summer has come and gone without it really having happened in the first place, at least at our house. I remember when summer was a different creature for me, back in the days when I was in school, even in college. I always worked in the summer, from the time I was very young, but at least the pace was different. I can’t remember when summer meant sleeping in—maybe when I was 11 or so? It’s been a long time. My kids will never really know the joy of the carefree summer, since they will always need to be in school or daycare or camp or something, due to our work schedules. But at least the summer rituals usually apply—swimming, grilling, staying up late to catch fireflies or go to the park, eating popsicles on the steps, hanging the laundry on the line.

Did I do any of these things this summer? Did my kids? I didn’t, not for the most part, as I always seemed to be recovering from surgery or having side effects of chemo or something that kept me apart from the world. We did go on vacation in the early summer, so that was good. Otherwise, I had my first grilled food of the season this past Sunday and I put on a bathing suit the other day to sit in our back yard, just to remember how it felt. Gabe did many of the above things with the kids, or with Lenny at least, but not nearly as much as in a normal year. The loss of this summer makes me wish that it was possible for one of us to be home more. It’s not, of course, unless someone wins the lottery at our house, and it’s hard to win when you don’t play the game.

The summer is only the tip of the icerberg. I’m starting to really worry that the kids resent me, or have just lost too much due to my cancer diagnosis, but they’re too young to really tell us what’s going on. I have become very concerned about Augie. He seems to have lost the few words he ever spoke, and his aggression is getting worse. He is very cuddly and loves people and he’s mostly happy. I’ve just been devastated with worry about him having autism or some other issue, but I know he also might just be reacting to how things are at home. I am going to have him evaluated, regardless.

Lenny is still acting out as well, though she’s gotten a little better. She doesn’t sleep right before or after I have chemo, and she still defies me and throws tantrums, which she never did before two months ago. And I wonder, am I that bad? Have I screwed things up so royally at home? You’d think you’d get a free pass from parental guilt with cancer but it is horrible thinking about what it’s doing to the kids. It’s worse to realize that we might never know how they would be different if they hadn’t had to deal with this.

I thought I’d been better this past week. Taxol has not been fun, and I felt very weak on Saturday in particular. I got the bone pain for sure (more on that later) and it felt like having a really bad flu, with aches in literally every bone in my body (I’m talking toes and fingers too). The day after chemo, I was depressed to find that all of my fingernails were killing me. It felt like I had the bristles of a hairbrush under each and every one. I thought that didn’t bode well for me keeping my nails. I cut them very short, and so far they are still there. They haven’t even started splitting, though they started hurting again today. I’ve heard that putting black nail polish on your nails can help protect them, but that seems either like an old wives tale or an excuse to rock black nail polish at work. Regardless, I now have 5 different black nail polishes, so I can start a new fashion trend: bald goth, anyone?

Anyway, food hasn’t been staying with me so well, but I’ve enjoyed eating it. Most of the time, I don’t feel sick. I’m tired every day, but I think that’s just the cumulative effect of chemo. Maybe my body was convinced it was done, and then I went back and did more of this. But on the whole I have been able to be a more normal mom, a more functional person. The weather has finally changed and it’s been beautiful, cool even. I made muffins with Lenny over the weekend. We went to a lake in the south suburbs and walked around with the kids. I ate at the dinner table. I did a little laundry. This might not seem exciting, but these were things I hadn’t done in a while. We even went to a minor league baseball game last week. But my relative normalcy doesn't seem to have fooled my kids, not at all.

That minor league game was the first time that I wore my hair outside of the house. I wore it to the lake too. It was cold-ish on both days and I didn’t want to be bald, and I also didn’t want to deal with the impact of being around a bunch of kids who didn’t know me and getting the questions. Wearing my own hair, with a scarf or a hat, was a truly strange experience both times. I looked so normal—just like myself. People treated me that way, guys looked at me, women commented on the red-headed family. I could reach up and play with my hair just like I used to do. Did anyone notice when I started crying? It happened several times. It just made me so sad. I used to be this person, and now I’m not. It’s not just about hair, it’s about the illusion of normalcy. I know that is so important to many women undergoing cancer treatment, but it’s the pretend-normal that is really rough for me. I’d rather just have it out there. I’d rather be the bald, obvious cancer lady, than be reminded of how I used to be and how people used to interact with my family.

It’s been a rough week emotionally. I have had no desire to write here at all. Maybe it’s chemo bringing me down, or hormones, or the rough times with the kids. When we were heading off to the lake, Lenny said “I wish I was at school and I didn’t have to spend time with the family.” Now, I did what any parent of a 4 year old would do in that situation. I told her that wasn’t nice and that I know she didn’t mean it, and that we would have fun. And then I left the room and cried. Maybe my daughter hates me, or maybe she loves me too much. Either way, I was thinking, what if this is the last time we get to do this? Why can’t we enjoy it? I can’t say that to her, of course, and it’s too much pressure to expect her to understand what’s going on in my head, but my god it’s hard.

Because this bone pain is scaring the shit out of me. Not because of taxol—that bone pain I can deal with, and it’s expected. What worries me is something different. Off and on for the last several months my spine has been hurting. I asked the surgeon about it back in June and she said it was highly unlikely that is was anything. She didn’t think I needed a bone scan, though I could have one if I wanted it. It seemed to get better so I stopped worrying; they say the pain from bone cancer never alleviates. I asked about it again when I felt it while I was on a/c, and the chemo nurse said that would be due to neulasta. Now Taxol is supposed to be to blame.

All I can think is, what if not? Breast cancer is most likely to metastasize to the bone, and the spine and hips are the most likely places. It’s unlikely to have “mets” when you’re stage one, perhaps unlikely for anything to grow during chemo. However, if that is what it was, that would be it for me. I would be stage 4, doing cancer treatment for the rest of my short life. They have “made great strides” treating bone cancer that has metastasized from the breast. They now give you up to 2 to 3 years to live.

Two to three years. That’s what I’ve been thinking about this week. Not getting to see Augie go to kindergarten. Not reaching 40. Writing letters to my kids so that they would remember me. Hoping Gabe marries someone else so everyone wouldn’t be stuck thinking about me all the time.

It sounds morbid because it is, I guess. And if I was just being a hypochondriac or having some kind of bizarre depressive episode, that would be different. It’s hard to be a hypochondriac when you’re my age and have cancer. Only 5% of women with breast cancer are under 40. I am one of them. Why couldn’t I be one of the 5-10% of women with no lymph node involvement who see their cancer spread elsewhere? I know I should just get the bone scan. I haven’t done it because the very thought terrifies me. It’s one thing to do what I’ve had to do with breast cancer. I just can’t imagine facing those test results and getting the answer I got from the breast biopsy. With this, there would be no going back to normal ever, and not much time to be abnormal.

The only thing keeping me going through chemo right now is the notion that things will start to feel more normal in a few months, that I have the possibility of a normal life when this is done. Is it selfish to say I don’t want to give that up too? I understand now where denial comes from, and I can see it now as a source of strength if you can really get into it. If I can stretch my denial from just not doing the scan to actually convincing myself that my bones are fine, that would be such a relief!

I thought about not writing this blog at all, because I know no one wants to read this—including me. I know I’m not supposed to have these thoughts, that I should be positive, and that it does put a real burden on people who care about me to hear me say these things. But maybe I just need to keep it real for myself, at least. That is probably selfish too, I realize. There's just so much pressure to feel things it's hard for me to feel; I need a place to acknowledge everything else, I guess.

I was talking to my ob/gyne last week about my menopause issue (my body still hasn’t made up its mind). This is the guy I have always felt has been supportive and understanding, even if he’s a little eccentric. When he told me the effects of menopause would be temporary for me, I said, well, hopefully (there’s at least a 20% chance it won’t be). He scoffed and said, great attitude! And proceeded to tell me to not let menopause happen. Just make sure it doesn’t, he said.

Huh? Have they been holding out on me? Can I push a “no menopause” button? If so, can I trade it for a “no cancer” button? Is that the “cure” everyone’s been talking about? I am totally behind that one. I would buy all the pink crap and wear all the ribbons and go on a thousand walks and even talk about strength and hope and love and whatever if I could have a do-over. I can’t though, that’s the thing. So the next step for me is to scan or not to scan. And to this day I’ve never had to answer such a tough question.