Day 326: Life Goes On

This will probably be the shortest blog I've written since I've started this thing, except for the BRCA results blog. My life has just been way too hectic to write about anything, or even to sleep or eat normally, in the last week or so. Once some of the dust settles I will have quite a long blog to write, because I definitely think it's interesting how the everyday excitements and stresses of life become complicated by a cancer diagnosis. You just think about things that don't enter other people's minds in the same situation.

One of the things that has happened is that I have decided to change jobs internally at the Fed. It's a long complicated story, especially because many of you don't know what I do for a living anyway, and if I described this new thing, it would not sound that different. My title remains the same. My boss will eventually change. I may or may not keep my office. But the decision was a huge one for me, and ultimately meant that I will be doing something very new, outside of my comfort zone, rather than transitioning into something else that I have years and years of experience doing. I will, if I am successful, become an expert in financial markets and all that means: derivatives, trading, wholesale payments, switching, etc. Will I be able to do this? Who knows? Am I afraid of doing this? No, not at all. I've done scarier, more foreign and uncomfortable things, all quite recently. It was very stressful to decide--let's not pretend that just because you have dealt with cancer everything slides right off of you. That is too much to ask, that people give up their normal emotions along with everything else. But there is fear of the unknown at work, and then there is fear of the unknown after death, and the two really don't exist in the same universe of problems.

I'll write about all the other stuff later, so as not to jinx anything that's going on over here. Since this is the TMI blog, I will update on the fact that my period was not a fluke, which is something I secretly feared when I wrote that happy blog about it returning. Since I was on antibiotics for the mastitis, I worried that the bleeding was just a weird side effect, since that can happen with Cipro on rare occasions. Apparently not--here it is, 3 weeks later. Yikes. It scares me to think that my periods would be so frequent so quickly after cancer treatment, since they don't understand how hormones affect triple negative cancer. Oh well. I guess my body is just fighting like mad to get back to normal.

And for the most part, it is normal. I'm mostly normal--we all are. We just have those strange moments at our house when we talk about the future, about exciting things, and then I say, and if I die, this would provide you and the kids more security! Or Gabe says, I can't imagine making this change if you won't be here! And then we kind of bitch-slap each other and move on. So stay tuned.

Day 318: Walking in the Shadow of Men

Every once in a while when I sit down to write this blog I am made painfully aware of the shortcomings of using this kind of format to tell the story of a life. I suppose that's all right, since this isn't really the story of my life, but the story of my cancer. It's just hard at times like this, when I have a lot of other drama going on that is alternately made much more difficult because I am a cancer survivor and much more meaningless for the same reason. I don't mean to be cryptic; I simply have a lot of things going on now that are very stressful, but I can't really write about them on a blog that spews information into the ether, because after all, this is my life, and I need to protect it.

So instead of writing about the things I'd really like to write about to get them off my chest, I am going to go back to a few old themes. Last night I was up for hours, upset and worried and scared. My breast has mostly healed from the mastitis and it is only slightly red over the scar. But it feels so hard underneath the skin, and last night it just felt like a round rock. Only someone who has discovered her own breast cancer can understand the fear that feeling that rock struck in my heart. Gabe told me it was scar tissue, that I would be fine. He said "I know you'll be all right." I kind of lost it there. No, you don't know that. I don't know that either. We don't know anything. Wanting it does not make it true. I cried, he held me, I admitted that I don't want to die, that I can't imagine that it's possible that I might die, that I feel so normal, so healthy in spite of this cold I've caught from the kids, so alive. And then today, I made myself feel it again, and while the hardness is there, the rock seemed to have moved or disappeared, and I realized that cancer doesn't behave that way. That doesn't mean there's no cancer in my breast--I won't know that until the end of next month when I get the first follow-up mammogram. It just means that I can go from death's door to normalcy in the relative blink of an eye.

I haven't cried that hard in a while. I'm glad I did that, and that I admitted to all of those things that I know it pains Gabe to hear me say. It's such a strange trajectory of emotions that this trip provides. Any moment of happiness, such as the realization that all of a sudden my hair is wild enough to perhaps require a proper haircut (look how crazy it is in the first shot! and how red, if I do say so myself), can bring me crashing down. I clutch at my hair and think, don't take this away from me! I act like someone with two personalities. I employ a contest of wills with my sometimes difficult daughter during the day and then crawl into her bed at night after she's asleep and cuddle with her and stroke her hair. I should say that I have never co-slept, and I could never stand the thought of having the kids in bed with us. I just needed that last night, and it seemed so selfish and irrational. She couldn't sleep well with me there, but she didn't ask me to leave. I felt like we were switching roles for a few minutes.

Ah cancer, that impervious roller coaster! After I came back to my own bed last night, I continued to read Bright Sided, the Barbara Ehrenreich book I've mentioned in this blog previously. I am finally reading it, and I love it. I feel so validated in finding someone else who is so aghast at this idea that we can change our fate just by thinking happy thoughts. I'm not the only one who is angry at the implication that I am at fault for having this disease, that I am in charge of willing it away, and that I need to just work on my own internal shortcomings and I will be healthy again. I lay awake for a while thinking of what to say about this in the blog, and I should have written it then, when I was very pensive and deep. The first thing I thought was that I have some previous experience with the ridiculousness of positive thinking as a way to solve all problems and avoid suffering. After all, I suffered a decent amount when I was just a child. I was so happy, and at home in my own skin, and imaginative. My brain misfired anyway, my legs couldn't hold my weight. What emotional or intellectual sin could I have committed at age six, age nine, to deserve that? It doesn't compute.

Does anyone realize how emotionally exhausting it is to be positive about something that is awful? You have to first tell yourself that your original feelings (shock, terror, sadness, depression) are wrong, and then you have to try to change yourself and conjure up some irrational emotions that have no place in something like cancer. Cancer is enough of a second job, why add a third with the personality adjustment? Life can be sweet, regardless of the circumstances, but CANCER IS NOT OK. Breast cancer is not some mild disease, something that makes you stronger or prettier or better off in any way whatsoever. Of course it isn't. Cancer is bad. There is a reason that humans were supplied with negative and positive emotions, and I think the reason is so that we could tell the difference.

There is a time for everything, we have learned. That was written a long time ago, but out culture is built on the surrounding assumptions of that statement. Why have we moved so far away from that? Why are we so convinced that there is no time to cry, no time to be sad or afraid? Cancer is the type of thing that calls for negative emotions. It is not a time to dance, but a time to mourn. I still dance, and laugh, and love and all of that, but not because of, but rather in spite of, breast cancer.

Bright Sided points out the huge amount of money that we spend as a society trying to make everything seem ok, trying to pull ourselves out of various funks and smiling through the things that make us suffer, like illness, layoffs, breakups. At best, we tell ourselves that it is ok to be sad or depressed for a very short period of time, say a day or two, and then we need to "get over it" and if we can't, we need to go to therapy. I know that therapy can help people. I am not against it. I just don't see what it could possibly do for me when dealing with cancer. If I were unable to function, alienating myself from people, staying home from work, drinking and driving, sleeping around, ignoring my kids or engaging in some other kind of destructive behavior, I could see the need. I mean, I'm sure Charlie Sheen needs some therapy. But I, and most people with cancer, am fully engaged in the world and doing ok, better than some people who don't have this cross to bear. That doesn't mean that cancer doesn't suck.

Why shouldn't I find the whole thing unfair, terrifying, sad? In all honesty I wouldn't want someone to take those feelings away from me, to tell me to find a way to make lemonade out of this lemon. I need for this to be a terrible thing in my life. If cancer is not terrible, if it is just one more thing, then the minor things that really are just one more thing to endure can blow up and become more important than they need to be, and the positive things become less wonderful.

We understand this kind of weather in the midwest. It has been relatively warm at different intervals this week. People just completely lose their shit when this happens in Chicago in March. We see 60 degrees in the forecast and people start ditching work, they leave their coats at home, find excuses to go outside even if it's pouring rain. Everyone talks about the beautiful weather. Would we do this if it hadn't been so damn cold for so long, if that blizzard hadn't knocked us on our collective ass just a little over a month ago? Would we be so exuberant about weather they experience every damn day in California?

I guess what I'm trying to say is that I think the way we have taken breast cancer and turned it into a battle to be won (God forbid you lose, and have your "survivor" status stripped from you in death), a gift to be thankful for, a sisterhood to embrace, has terrible consequences for those who have the disease. It reduces human suffering to an excuse to buy a pink teddy bear.

Last week I was researching lymphedema sleeves because I haven't flown since I've had cancer, and I wanted to get a sleeve before I do. In my search I came across the blog of a young woman, age 34, who was diagnosed with triple negative breast cancer. Her blogs were so positive, filled with vim and vigor and a great fighting spirit. She talked about her amazing support system, her wonderful boyfriend, her general strong body and overall good health, her excellent habits related to diet, drink, smoking, etc. Every blog had this positive spirit. But so many entries also brought more bad news. She found out she was stage 3. She had a hell of a time on A/C chemo but said very little about it. Her hair came back, but she developed severe lymphedema. And then, less than two years after initial diagnosis, her cancer metasticized. She seemed to feel fairly well until the last few months, when she must have suffered terribly. She died when she was 37.

Those last few blogs were extraordinarily painful for me to read. They were all positive, even when she was writing to tell people that she was in hospice and she would rather have visits than phone calls because it was too hard to speak. All I could think was, you must be so incredibly scared, so sad, your boyfriend and your parents must be sobbing all the time, this is so unfair and stupid. And I wished for her that she could have given voice to those things, that she could have admitted that dying wasn't ok, that she wasn't strong anymore. All of the things that she had talked about that made up the story of her life--what a shame to lose that promise. What a bunch of shit.

It reminded me of two things. Years ago I saw this wonderful documentary called, I think, Silverlake Life. It was directed by two gay men who decided to film their life together when one of them was diagnosed with HIV. The other man contracted it as well, and one of them died at the end of the film. The movie is incredibly well done, and most of it is about their lives, in all the surreal ordinariness of any life. It is also filled with the crazy scheduling and work that having a disease like AIDS entails. Finally, it is a chronicle of the disease's ravaging nature, as you see this vital healthy man reduced to a skeletal form, unable to move in bed, sores all over his body, unable to talk. The camera rolls while he dies. His partner cries and asks, isn't he beautiful?

The genius of the film is that of course he is, and of course he is not. His life was beautiful, his disease and death were painful and sad.

The second thing I think of when I want to rail against the prevailing notion that we all could just heal ourselves if we were happy enough, brave enough, is the following two words:

Walter Payton.

I've said it before--no one could be in better physical condition, more generous, more positive, more deserving of good karma and fortune. There was a sports hero worthy of the title, so far removed from the thuggery and misogyny and felonious behavior we see today in the NFL. And I've mentioned it before that I think it is interesting how we never invoke his name when we talk about heroes with cancer. We talk about Lance Armstrong, Sheryl Crow. We talk about the people who lived. More than that, we don't mention him because just a few short months into his diagnosis, he was forced to give one of those press conferences when he was supposed to get up there and say that he would fight this, that he would beat it. He was supposed to talk about hope and inspire us. Instead he got on camera, gaunt and sickly, a shell of his former physical prowess, and he cried. He said it didn't look good for him. He thanked everyone for their concern.

I loved him for that then, and I love him more for it now. I have tried to bring some of the reality, some of the humanity, to cancer in this blog, and I don't know if I have succeeded. I can't have done as well as that image. Thank you Walter, for the beauty of your life before, and for making it ok for those with cancer to cry, to be afraid, and to even admit defeat. You showed me that I don't have to deny these feelings or pay someone else to change them for me, that I don't need to be normal or cheerful all the time. I know how much you wanted to live, that you would have given all of the things you had achieved before in life for that. If I hear one more person say that you just need to believe it and it will come true, I will ask them what parent they know who wouldn't cut off their legs instead of miss their kids' childhoods. One minute your body performs at the highest level, and the next it betrays you. That is enough of a contradiction that it is unnecessary to expend energy trying to create more contradictions. Life is a gift and the things that threaten it are a curse.

At least twenty times a day I actively wish that I will live. Every time I look in the mirror I tell myself that of course I will make it, look at me! I seem young, healthy, attractive even, alive. I allow myself to envision conversations with my kids when they're adults. I make plans for the future. And yet...I acknowledge the man as well. The one who stands behind me with that gun at my head. Will he pull the trigger? Will he walk away? And I realize that is it by imagining him that I have saved myself. I cannot make him leave, you cannot will another person out of existence. By seeing him, I can cut myself a break. There might be someone behind me who I can't shake, so instead of spending precious time trying to do the right thing to make him change his mind, I do the only thing I can do. I feel the gun's metal on my crazy wild hair, I hold my head up and just keep walking.

Day 313: Beware the Ides of March

After writing that letter to Lenny last week, I have felt bereft of words. While it might not seem like it was that intense, that was more emotion than I usually conjure up in one sitting. I read back on that and it covers the gamut of the feelings that I've had over the course of my time with cancer, from guilt and regret and grief and fear to the more pleasant, every day emotions like love and humor. And so I find myself with little to say this time, at least in relative terms.

The problem is, I feel like I am living two lives, and it is kind of exhausting. One is the off-kilter life, where I am in the middle of cancer, in the middle of the land of fear and the unknown and wondering what the hell has happened over the last ten months. In the other, I am myself, or some version thereof. And yet my life is still one life. I don't get to live two of them. I have to bring them together somehow. When I want to throw up my hands at work or in a personal situation that seems meaningless and absurd, I realize that I can't actually do that in this real life that I live, or all of the normal that I have wished for will wash away in reality and I will be left with nothing but the off-kilter. It's just so strange to have to purposely choose every normal thing that you do, rather than just do it.

Does that make sense? I mean, the world is as the world was, for me, and for others around me. I have to make decisions at work and figure out what my career path is, something I haven't had time to think about in a few years, frankly. I have to cook, go to the grocery store. I have to try to maintain a somewhat normal marriage. That has gotten easier since my menopause has left and my normal sexuality has mostly returned, along with much of the rest of the normal me, from my energy level to my ability to eat or what have you, but it's hard all the same. In a moment of intimacy Gabe will touch my breast and I can't help but say, does that scar tissue feel like cancer to you, and we stop and talk about it for a while. I have less patience for stupid fights. Gabe worries about me more, and probably lies to me more, when I need him to tell me I'll be fine, when I have never been that person in my life. I'm the one who offers comfort, who doesn't cry. It's strange when your roles switch, even when it's comforting. We are in the process of getting used to each other--eight years later. It takes some extra emotional energy.

And yet while we expend this extra energy, we expend the normal energy as well and we end up feeling a little bit, well, expended. The aspects of life that everyone deals with do not go away just because you have cancer or some other disease or condition. There is no hall pass. I have to take care of kids and figure out whose turn it is to stay home when one of them has a 102 fever for three days and as soon as that kid is getting better the other one gets it. These are the things that all working parents must manage. On the other hand, as I think about this I also have a mystery to solve.

Where did this illness come from, how did Lenny get so sick all of a sudden? Gabe wonders if it's meningitis, my mom wonders if it's appendicitis, and me? I wonder if it's cancer. But in an even stranger moment I find out that in all probability I gave this illness to her--possibly passed on strep throat to my kids. I went to visit my surgeon at the end of last week to find out why my breast was still red and painful and to see if I needed to have an abscess aspirated. She told me that I should wait until I finished the full course of antibiotics and see if I need an ultrasound then, because they were bound to find fluid in there, and since it was starting to heal it would be a bad idea to introduce a needle to the area. She also told me that I could have had simple mastitis, or I could have had a cold, flu, strep, or something else that traveled to the breast--something I will apparently be susceptible to for, you guessed it--forever. Because I took the antibiotic immediately, I never presented with other symptoms besides the fever and chills and aches. So I could have had an illness that I didn't know I had, and passed it to my kids. That's innocuous enough, but it reminds me of this other, larger, unseen illness I once had. The thought of that makes me ignore my pink breast, which is so much better than before, but still a little inflamed with scar tissue that seems to have blown up out of nowhere. I can't deal with it right now--the kids need dealing with, and there is only so much time. My body takes up enough of our time these days.

Did someone once say that your body is a wonderland? Now I know this isn't what he meant, but boy do I feel that way about mine. I wonder about it every day. What the hell is going on in there? How can so many strange things occur in a place that works normally almost all the time? Lately, I feel such a disconnect to things. I sometimes feel that the normal, healthy, working body that I'm using is but a shell surrounding some diseased core that I can't even see. Other times, I feel that the fact of my cancer takes place in a dream, and this body that I see, that others see, is the real thing. It's hard to know what's true.

That sounds deep. I'm just feeling out of sorts due to the mundane nature of my life at a time when everything outside of the big picture seems hopelessly mundane. Ah, so that's the new normal! What a trip.

In lighter news, what do you all think of this pixie hairstyle I'm trying for here? Today for the first time, I used my gel and a new hairbrush and was actually able to get my hair to lay flat. I've been spiking it up on purpose to mask the masses of cowlicks that seem to take over if I don't regain control. But I love all these pixie haircuts that are popular now, and I need to figure out if this look works for me. Do I need it to be a little longer so I can style it more? Should I leave it this length and brush it down, or spike it up? I think it's time to take another vote. Short or long? Spiked or flat?

I never thought I would say this, but I don't think I am going to grow my hair out again, at least not for a long time. It's not just that I like short hair--that's a simple explanation. It's the one that I give when people compliment me on my hair (I must say, a little hair goes a long way in how people interact with me, from women's willingness to acknowledge my existence, to men's interest in flirting, to kids not looking at me twice) or ask me if I plan to keep it. The truth is, I can't imagine having that long, curly, obviously red hair for deeper, more personal reasons.

Maybe the best way to explain it is through this circuitous route. I have a new favorite google search that led to my blog recently: "Someday I will look into a stranger's eyes."

Whoever googled that, you are awesome. First of all, that is just a great search. Second, you have reminded me that some nerdy algorithm took those words and led someone here. And it's perfect. I can see the search terms, but I know nothing of the person behind the search. All I see is the phrase, and it reads like a fortune, like my own personal soothsayer is making a prediction or giving me a warning. Because I'll tell you sister, regardless of what you were thinking about when you typed in those words, that someday is here with me every single time I look in the mirror. There I sit, looking into a stranger's eyes. Who is she and where did she come from, how did she get in my house? Perhaps that is why Ceasar laughed in the face of the threat. Beware the Ides of March indeed. If something so strange could come true, what is there to do but laugh?

Day 306: For My Daughter's Fifth Birthday

I am going to do what I promised, and include some kind of birthday message to Lenny, who is five today (at 5:48 PM…do mothers ever forget those things? I suppose not, after the two and a half hours of pushing). However, I have a rare opportunity to write about something positive on the cancer front, so I thought I would update on that first. On Sunday I was starting to feel better from the antibiotic for my mastitis; my fever was gone, my breast was still red and painful but it wasn’t nearly as swollen or hard as on Friday and Saturday. I decided to go to pilates, so I went to the bathroom to change. That’s when I almost had a heart attack.

Less than three months after chemo ended, six months after the last one, I had my period.

At first I didn’t believe it. I felt like I was 11 again, wondering what the hell that was. Then I thought, so that’s why my hot flashes are gone and my libido is back! My hormones have gone back to normal almost as suddenly as they disappeared altogether! I didn’t think it was possible to be so excited about something that is generally speaking a pain in the ass. When I was a month shy of 12 and I had my first period, I found it annoying more than anything. I was a tomboy and this whole menstruation thing just seemed like an inconvenience. My mom was worried that I would have the same issues that she had with anemia, pain, etc., so she wasn’t happy for me either. I enjoyed not having it for the duration of my pregnancies, and it didn’t return for 3 months after I weaned Lenny, though I started having regular periods when Augie was less than three months old even though I was exclusively nursing. I can’t say I welcomed it any of those times, though I suppose I was relieved to know things were working normally.

This time I was so happy about it I actually teared up a little. I called Gabe upstairs and told him, and we had another of those strange moments that only happens in cancer-land. My husband started hugging me and crying, telling me I should believe him now that I will be fine. Then he said “I guess I should go schedule that operation now.”

Is it normal for a grown man to respond to his wife getting her period with relief and happiness and a promise to get a vasectomy? Well, who knows what’s normal anymore. I am just ecstatic that my body has recovered so well, and so quickly, from chemo, after it literally brought me to my knees not that long ago. If I didn’t have this hair, you might never know I had gone through chemo at all. The long-term effects seem to have escaped me, at least those that are less insidious. On a happy day like Sunday, I could almost forget what I went through with chemo—almost. I can’t forget surgery and radiation, especially with this continued redness and pain in my breast, constantly reminding me of what I went through. In fact, I wonder if this mastitis is somehow related to my cycles, since I had it the first time almost a month ago. It’s possible that this sign of normal womanhood could bring some real suffering my way for a while.

Regardless, this little bit of normal made me so happy that I really wanted to celebrate. It was too late to find anyone to celebrate with me, so I took myself out for a steak dinner and had too much wine while Gabe took the kids to a birthday party. If anyone else thinks this bit of random news is a cause célèbre, let me know and we’ll go out on the town.

This should be the clinching example of how attitude doesn’t affect cancer’s outcomes. I thought I would be in menopause forever. My hot flashes were so severe, my sexual side effects so extreme, that I just didn’t see how it would be possible to go back to normal. And yet my body did—just like that.

So there’s the cancer update. I’m on a prolonged series of antibiotics for this mastitis and therefore I’m on hiatus from rowing but other than that my life is just the same. Except that my little girl just turned five. What do I make of that? It’s hard to put into words, but I promised to, so I’ll try:

Dear Lenny:

Today you are five years old, and I am writing you a letter. We have a mug at home that I use to drink my tea that says that a letter is a hug from a friend who is far away. A letter is not, however, a real substitute for a hug, or for being together. Words are no substitute for just being there. And I probably won’t allow you to read this letter for some time, until you are older, so this is a present you won’t even know you have received.

In some ways this entire blog is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive this cancer, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you that you might not care about, we steep ourselves in denial about anything potentially bad that could happen to you because we couldn’t bear to see you go through it. You are the heart that walks away from us.

It is too easy to say that I can’t believe you are already five years old. I can believe it. Time moves so slowly for you as you wait for the next thing to happen, not understanding what that thing is or what it means. You wait for something for five minutes and it’s 10 hours in your mind. You ask about what it will be like to be grown, what you will look like, where you will live, whether you will always be older than your brother even if he is bigger than you. We sing to you on your birthday and kiss and hug you. Your father cries. He wishes time could stand still and you would stay little forever. I wish that time was just slower, until I realize that if I could choose, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself. It is my selfish fear that I won’t be able to do that, but that is not what gives me pause.

I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Children are just small people, whole unto themselves. Perhaps there are some things, like table manners, that we can take credit for, but most of the things that are marvelous about your kids are things that have nothing to do with us. We did not give you a photographic memory. Two weeks ago, you performed in a play. Two nights ago, you decided to have your stuffed animals put on the same play. You recited the entire thing, all of the parts and the narration, without looking at a single piece of paper. When I play the insufferable parent and I say “remember when you were 18 months old and…” you often actually do remember. This talent of yours has caused us significant embarrassment as parents, and has been continuously entertaining as well.

But it’s not the only thing you bring to the table. Regardless of what convention tells us, we did not make you smart. You were alert from birth, watching us, waiting to learn about the world, too interested in everything to sleep. We taught you to read, never used baby talk with you, assumed you had some reason. But when you pointed to a photography book at your grandmother’s house when you were fifteen months old and clearly said “Signs” (the title of the book), I had no more idea what to make of that than anyone else. The things you know continue to amaze me years later.

We did not make you shy around people and comfortable on a stage. We did not make you fragile, or funny. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary. We sure as hell didn’t make you good at gymnastics, my least favorite sport in the world.

We didn’t even give you that beautiful red hair—not really. I don’t have any other hair DNA to pass on but red, and your dad is apparently a carrier of the gene. The end result was completely out of our control. Now that I have short hair that I gel up into abstraction, people wonder if you even belong to us. Where did you get that hair? My mom, you say. But it’s yours, and I know you want to hold onto it right now.

I do have to take credit for some things, even if I would rather not. You are an inherent worrier, but I have given you one of the biggest reasons to worry that a five year old can have. I am truly sorry for that and for all the times when you couldn’t sleep during this past year. I’m sorry that you have seen some of your friends less often and that you missed out on things. I gave you this burden, but I didn’t tell you how to deal with it, because I really didn’t know how. I was concerned about my impact on your friends and classmates, not wanting you to have to answer questions about cancer. How could I know that you updated everyone about my cancer treatment all the time? How could I predict that you gave a little preschool tutorial on chemo when someone asked about me and you said “my mom is on chemo. It’s medicine for people with cancer. It made her lose her hair and it can make her sick. You get chemo through a needle in your arm. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that.

There are many things I wish for you. Back in November I included a poem in the blog that I had written for you that gave voice to many of those things. I could say many trite things about wanting you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I don’t know what I want for you. I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. For example, I know that you are a daddy’s girl through and through. I know that I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and bald. I read the newspaper and ignore you. I am the reason we watch sports on TV, not kids’ shows. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you. I am, quite frankly, not the fun parent, even if I am often the funny one.

So what am I? I am there. I always come home, and when you are upset you ask for me. I know that I have the ability, good or bad, to be like a piece of furniture in your life, that seeing me there is comforting and expected. That is how I feel about you. I want to see and talk to you every day, but if I can’t, it’s enough knowing that you’re seeing and talking to someone else. A man told me once that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. Then he stopped and said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. If I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there, it would be enough. I love you.

Happy birthday, Lenny.

--Mom

3/8/11

Day 302: Red Balloons

Sometimes what I want more than anything is to hear from some women who are years away from their original breast cancer diagnosis, so that I can see a way out of this madness. This really is the gift that keeps on giving. My blog tonight will be more like the treatment-related ones of the past, steeped in bitching about cancer, because I need to vent and this is how I do it. Don't feel compelled to read it; it's helpful for me just to get it out there.

Remember how I wrote about my breast becoming red and swollen a few weeks ago? It went away, just like that, and has felt fine ever since. Last night I was feeling out of sorts all evening. My body hurt, especially my hips. I tried to ignore my fear about that and assumed it was the old wounds, telling me that it would rain today. I went to water aerobics hoping that would help my joints feel better. The whole time I was freezing, and I never warmed up. I came home and was pathetic, had chills and body aches, my left breast hurt and I figured it was from working out. I fell asleep on the couch at 8:30. Gabe babied me a bit--offered to carry me upstairs (I think he secretly loves to carry me, but that's just not my thing, so I dragged my sorry butt up by myself), put my socks on for me. I slept until 7 AM and woke up with a 100.7 fever. My breast was bright red, hard, swollen, and so painful I had to use both arms to push myself up on the bed.

My first thought was, I can't be sick! Lenny's birthday party is tomorrow! She is going to be five on Tuesday, and it's very hard for me to believe that. We are doing the party at an offsite location for the first time, but I had planned to bake cupcakes and cake from scratch. I just thought, if I'm sick, I shouldn't bake and spread germs, and I shouldn't go to the party and she will be devastated. I have missed enough family functions and holidays due to cancer. So I took some tylenol and my fever went down, and Gabe offered to work from home so he could help with the party preparation.

Then I made the mistake of going online. My breast was freaking me out. A quick search of "red inflamed breast" gets you two things. One, a bunch of information on mastitis (breast infection, most common during nursing, though I never had it when nursing either kid). The other is a bunch of information about IBC, inflammatory breast cancer, the rarest and most deadly form of the disease. Deadly, as in 40% chance of living 5 years. It's hard to describe how your heart just drops in your chest when these thoughts come into your brain. There's immediate math involved. I would possibly get to see Augie into kindergarten, maybe he would still have memories of me. Lenny would be ten. I might live to be 40.

Then I took a step back and called my surgeon. I also called my radiation oncologist. I don't know why I didn't think of doing that three weeks ago. His office is 5 minutes away as opposed to all the way across town. I love this little hospital sometimes. I called, talked to a real person, not an insufferable litany of prompts, and was transferred directly to a nurse. This was at 8:45 A.M. She put me on hold and came back saying "the doctor can see you at 10:30."

That's what I'm talking about. I was so nervous waiting that I decided to just do some of my baking right then. I made a strawberry cake and some brownies for our book club tonight and putzed around trying not to think about 5 years and 40% and all of that.

The doctor saw me very quickly, took a look at my breast, made a face, touched it and said, yep, you have mastitis. He took out his iPhone to give me a prescription and after we had a talk about the fact that he was using an iPhone for that purpose, I basically prescribed myself an anti-biotic. I said look, I know I can take Cipro. I am allergic to almost everything else. He said fine, take it, call me if it gets redder, spreads, or if your fever gets to 101. He is on call all weekend, so that's good at least. He made me promise three times to call him Monday and tell him how I'm doing. He's a nice guy.

I went home, did more baking, took a walk with my neighbor, came home and after about an hour felt like death warmed over. I went to bed. I kept calling for Gabe like I was an annoying husband with a man-cold. When I asked for the thermometer, I was furious to see it at 101.3. I guzzled some tylenol and drank three glasses of water. It went down about half an hour later.

Can you imagine how the last thing I want to do is go to the E.R? I would rather shave my head again than spend more time in a hospital, especially with an IV, which is what I would need if the infection gets worse--antibiotics through an IV. (Well, maybe I wouldn't rather shave my head--I have finally started to be able to "style" my hair to some extent, with gel, which makes it look much darker, but at least masks the fact that otherwise my hair is 100% cowlicks. I tell myself that it's "edgy." Don't contradict me, just go with it). I wonder if I will ever be able to have another IV without thinking of chemo. I also just feel too much guilt about all the things I missed, so I needed to be well. My fever calmed down and I even went to book club.

But damn does this look like hell. Due to my own neurotic internet searching of pictures of what IBC looks like versus mastitis, I thought of taking a picture of my breast, nipple covered of course, and putting it on here so other women who are going through this could see the difference. I told Gabe this and he said, for the blog? No hon, no one wants to see that.

Now I know this isn't what he meant, but was there a time when my breasts were attractive? I used to like them so much! I can't remember the last time I let Gabe touch my left breast. He tries, and he seems to think they look great when they're not causing me excessive pain, but between the scar tissue and all the other crap I just don't want him near that side.

Anyway, for now, this HURTS. What a nightmare. I had no idea it was possible to get mastitis after a lumpectomy. Apparently doing radiation makes you more susceptible as well. I asked if it was due to exercise, did I do something to it? No, that's not it. You are just more susceptible to infection from the surgery. I've heard from one woman who got mastitis two years after a lumpectomy due to a cut on her finger. I have had many surgeries in my life, and I can't believe that there are so many lifelong potential side effects of a lumpectomy. Lymphedema, recurrent mastitis (it can take up to a year to clear up I've heard. What?!), you name it.

You think they could tell you this stuff? I am continuously amazed at how little doctors tell women about the realities of breast cancer treatment. I literally get more information about potential problems when I get a flu shot. I mean, come on, this is not uncommon, this breast cancer, unfortunately. If I knew that lumpectomies and radiation had these kind of issues associated with them, maybe I would have had a mastectomy. Probably not, actually, but at least I wouldn't be so confused.

And I'm not the only one. The other day at row practice we were learning some strength training moves and a physical therapist who specializes in lymphedema was there. I decided to ask her the question I've been wondering about forever. I said, I work out a decent amount. I do 45 minutes to an hour of strength training at least twice a week, I row, I do pilates, water aerobics, try to walk an hour a day. Because of scar tissue and chronic pain, I favor my left side when I do strength training. I can't hold as much weight on that arm, especially when it's a pulling weight (holding weights with straight arms) or with arms overhead. Due to this, I think I have a muscle imbalance--I'm stronger on the right side, and that is hurting my back. I finally figured out that was why my back was hurting a few weeks ago. So she told me that was common, and I needed to scale it back with weights even if I don't feel that it's doing anything for me to use 5 pound weights.

I have asked all of my doctors about this. No one ever gave me this information. I am not 80. I am active, I'm 35, and even if I was a sloth, I have a 26 pound son who requires lifting. Several of the other women at ROW asked this therapist questions--many of them years in the making. One woman said, if this is common after a mastectomy, why doesn't my oncologist know this? The therapist said her theory is that we could be angry, or we could do something about it.

I took a little bit of offense to that. I think we have a right, maybe a responsibility, to get angry. This is a shocking and unacceptable situation, where women go through this major surgery, then they have their immunity destroyed by chemo and maybe go through radiation which adds all kinds of other risks, and then we are basically thrown to the wolves. You stub your damn toe and they give you physical therapy these days. With breast cancer, they amputate a body part, or in a lesser surgery mess around with the tissue and muscle that you use every single time you move your arm, and they give you nothing. I have had chronic pain since June, but I just figured it was the least of my problems and didn't complain until my breast blew up like a big red balloon, scaring the shit out of me so I thought I was dying.

Is that right? I think not. Moreover, I can't take tamoxifen. There's nothing for us triple negatives after chemo. Nothing save exercise. So they tell me I must exercise to save my life, and I do it, but probably more so to save my sanity. And yet I can injure myself by carrying ten pounds on the one side and 5 on the other. I should exercise, but only in this very specific way that is either too cautious for someone as active as me, or is just hard to do in any practical sense. I get tired of being the one who has to do something different in the gym. I carry a medicine ball when other people use weights. I do crunches when everyone else does a side plank on the left. I can't do push-ups. I do kickbacks instead of overhead triceps. Half of the modifications I have to do I figured out by myself, and the other half I figured out when I asked the gym manager what an alternative would be. I got zero information on any of this from any doctor. But when people look at me, I look like I'm in shape, I look young, I should be able to do these things. What the hell is wrong with you?

Wouldn't it be helpful to know HOW to exercise if it's so damn important to staying alive? To know that it's not metastatic cancer of the spine, but a muscle imbalance? Five minutes in a cancer survivor's shoes and these doctors would realize that the real information would save you a bunch of worry about much worse things. They just must not realize what goes through your mind.

And why wouldn't it? You think you have a clogged duct. Nope. Cancer. One tumor? Nope. Three. Common type? Natch. Triple negative. After something like that at age 34, it's hard to stay overly optimistic when other symptoms arise. So you can imagine my relief, my palpable happiness, when I found out I "only" had mastitis. A serious infection that could take months to clear up and land me in the E.R! Thank you! I'll take it. I know Gabe was happy too. He no longer had to answer "no, honey, you're fine," When I would ask him "do you think it's cancer?" desperately wanting him to tell me something to make it go away.

I would just like to see the end of chronic pain, disfigurement and all of that. I want to be able to talk to people without having some breast cancer-related thing going on to discuss. I want to be able to lift my son without wincing, to wear a bra, to let myself and my husband enjoy my breast again, to hug people without pain. I know I harp on it, but I want to be normal.

In many ways I am, but this breast cancer thing takes some of the normal out of the equation. I just would like a weekend where I don't have to think about it. It's been over 300 days, after all. That's a long time, and yet it's short too. I can't believe how fast the three months since treatment ended have gone. Time just dragged during chemo, even during radiation to some extent. I couldn't wait for it to be over. And now I just want more time. More hours in the day, more days in the week, more life. I want to be able to slow down, but I'm a young working mother and that makes life just slip by no matter what your situation. In the middle of the mundane I stop and think, what is this crap? I just want to be at home: at home in my body, at home with my family, at home with the idea of my life.

I want to blog about something else, about my daughter turning five. Five! How did that happen? Maybe I should make a pledge to do that, to write her a birthday letter, to get outside of the physicality of myself. She told me out of the blue that yesterday she wanted me at school, that she cried for me. She went to the "feel better corner" and her friends brought her pictures they colored, which cheered her up right away. I asked why she wanted me, and she gave me some answer that masked the truth. That's all right though, I know the answer. She worries that I will die. She thinks about it in the middle of the day, all of a sudden, just like I do. I know that, because she is my daughter and there are things I will always know about her that she doesn't know about herself. For the next few days, while she is still four, I will try to think of some ways to tell her about those things, and I will hope that in 20 years, we could look over them together, when she's grown and I'm middle-aged. I can hope, right?

Day 295: We're Off to See the Wizard

Sometimes when I sit down to write this weekly blog, I wonder how in the hell there can be anything left to say. There's no news on the cancer front, which is positive I suppose, and no really strange things have happened in the past week. Unless you count yesterday, when I was walking back to work after having lunch with a friend whom I haven't seen in about two years, as she was in town visiting. Out of nowhere, a guy who looked relatively normal put his hand on my head and quickly swiped it up as he was walking past me, all without saying a word or looking directly at me. This is hard to explain in words, and it was hard to explain to Gabe why this disturbed me--outside of this general theme wherein I don't like to be touched by strangers--until I said "it was like a scalping motion."

So that was disturbing. I'm not sure how that's related to cancer, though it makes me think I still look strange or these things wouldn't happen. I started to feel better about my overall ability to blend in after that weird experience at the bar that I wrote about in the last blog. When I went to vote, the woman at the polling place looked at my I.D. (the picture was taken maybe a week before Augie was born--I look huge!) and said "Hair's gone, huh?" I was about to say something along the lines of yes, I know, this wasn't my choice, when she went on: "Getting ready for the summer! I don't blame you! I'm sick of this winter." Then a waitress at a restaurant up north who knows what I used to look like but doesn't know I had cancer told me "that haircut looks really cute on you!" So perhaps I'm not such an obvious Cancer Girl as I thought.

I have been thinking about cancer not from my own perspective recently, but rather from other people's. Lenny has been asking a lot of questions about whether things happened "before we knew you had cancer." I always answer her honestly and then I say, but why does that matter? She never explains. It makes me wonder how different I am, how different I look, and what that means to my kids. I was looking for pictures of us before we were married so that I could show Lenny that I was not really that different even before she was born. I only found a few photos. There's a huge gap in the digital photo library between right after Gabe and I met in early 2003 and when we went to visit my brother in Hungary in 2005 8 months after we married. I think the photos just haven't been organized.

So I found this picture of me in a swimsuit, taken two months after Gabe and I met when we went to Baraboo, WI, for the weekend for his birthday. This was supposedly the trip when Gabe realized he wanted to marry me, though luckily for us he didn't say so because that would have freaked me out so early in the relationship. It had something to do with me being a nerd. The story goes that I was looking at the sunset and instead of saying something romantic, I asked him if he thought it was weird that the sun looks like it is moving down in the sky when really we are spinning away from the sun. Apparently this is the type of thing he wanted to say but didn't because he thought I would make fun of him. So when I said it, he knew he would ask me to marry him one day. About 8 months later, he did. Eight months after that, we got married.

Anyhow, I was getting ready for water aerobics right after finding this picture last night so I posed like the picture and had Gabe splice them together. The idea was to show that mommy is still mommy, pre and post-cancer. However, I didn't show Lenny, even though Gabe said, wow! you look the same! Because truthfully, I just don't see it. When I look at this picture, I think, huh. Those look like two totally different people. I was 27 in that yellow suit, I'm 35 in the blue one. I've had two kids in the meantime and a lot of life has happened. But that's not it. I just look completely different to myself. Looking at that young woman on the beach, I think, she can't see yet how life will change! She doesn't know that in just a few years she will get pregnant for the first time, but she will also have cells start to mutate in her body that will lead her on a path no one wants to go down. She is, quite frankly, someone else.

And it's this ability to separate myself from myself that leads me to think about technology, about this particular format that I have chosen as my own kind of selfish therapy. This computer is like my own little wizard, bringing this strange experience of mine into other people's consciousness at the same time that it brings me a little bit closer, somehow, to myself. It is because I write this blog that I don't feel that I need support groups or therapy. I can give voice to things that I would never say out loud, even if I was paying someone to listen. And because it is public, other people know I've said it, so it must be true. It's immensely helpful in that way, though as I've said, it's alienating too. Or maybe it's just cancer that's alienating, not the fact that I talk about it. It does seem like people talk to me and interact with me more now than when I was in the throes of chemo and I was miserable and looked scary, or if not scary, then at least bald.

While cancer is hard for those who are witnesses to it, I still contend it's infinitely harder for those who actually have it. There is so much to take in, so many decisions to make. Every aspect of it is overwhelming and it is so important to feel that you have information at your disposal. In fact, cancer is one of the more isolating diseases in modern times, due to the huge fear factor associated with it. And yet doctors all tell you right after diagnosis not to read, not to go online, to avoid the Internet.

These people have got to be kidding. On the one hand, I understand the sentiment. I would have never known that triple negative was "bad" if I hadn't looked online, because at Northwestern they focus on stage and grade, not type, when telling you about your chances of recurrence and survival. It might have been better not to know about the rare and aggressive nature of my type of cancer. On the other hand, no one told me much of anything, and I was desperately searching for answers. I have done so many convoluted google searches that I wish I had kept track of them.

I didn't do that, but I can discuss some of the searches that people have done that led them here. I know I've mentioned a few of these before, but I want to spend a little more time on the loaded word "searching" in this week's blog. I'm especially fascinated by the very general searches ("lumpectomy blog," "blog+lumpectomy," "bald woman") that lead folks here.

Why is this interesting? Well, I don't show up in the first 100 hits, or maybe even 500 hits--I didn't check that far. And I only see these search terms in my blog stats if someone actually views a page of my blog through the search. That either means that someone is looking for something very specific and is hell-bent to go through a lot of sites to find it, or it means that someone is spending hours looking through all the sites, poring over the words, trying to understand what she has learned about herself and her new life. Either way, it makes me think about cancer as something that even I experience outside of myself, in this new world, out in the ether. Something that is so personal, so emotionally and physically damaging, is also experienced virtually. I find that interesting.

These searches make me think about the people behind them, and they bring out different emotions in me. There are those that make me feel proud, that make it seem worth writing about something terrible if it helps someone else understand what is in store, at the same time that they anger me because it should be doctors who answer these questions, not cancer survivors:

"can thin small breasted women have a lumpectomy"
"how soon do you wake up after lumpectomy"
"does being thin affect radiation for breast cancer";

There are the image searches, which inevitably lead people to my GI Jane blog (the picture of me in the Meg Ryan wig I never wore more than a handful of times is especially popular in Germany):

"chemo shave"
"bald women with cancer";

There is the one that makes me want to shake the hand of the person searching:

"what to say to someone who is having lumpectomy surgery";

There's the one that I would like to send to my oncologist as proof that I am indeed not a "spurious result:"

"paclitaxel heart palpitations the next day";

There are searches that make me want to say, in all sincerity, good for you! Until I realize that the woman writing must have been putting these words into google because the result she experienced, however welcome, was still unexpected and confusing:

"after my lumpectomy I felt great and had lots of energy";

There are even some that make me want to contact the person searching and tell her to find a new doctor:

"lumpectomy arm has IV needle";

There's the one that makes me laugh, that tells me that either the person was specifically looking for my blog and forgot the URL, or he or she is my secret soulmate and Gabe had better watch out:

"It's all over but the shoutin' cancer";

There are those that almost make my heart stop as I remember so clearly what it was like to go through these things:

"waiting for BRCA results;"
"felt like such a fake" (that is such a general sentiment that I don't understand how it led to my blog, and yet there is nothing truer than those words when I think about myself wearing a wig);

There is my all time personal favorite:

"How to look amazing in just one week!" (this search led to my "Just one week later" blog after radiation was finished, when I looked like hell with no eyebrows and chicken little hair. I like to tell myself that I can answer this question expertly at any given time, however);

And there is the one that pains me to read, because it cuts to the quick:

"young cancer survivor unable to picture old age."

All of these words have other words underneath them, other meanings. This web searching that we do coincides with all of the soul searching that cancer entails. Can someone please answer the unanswerable questions? Can I get a witness? I wonder sometimes where my searches are, what would happen if I put my most personal questions into the cloud. What if I searched for this: what do you do when your husband is crying because your daughter was asking what she will look like when she is 18 and they discussed whether she would be taller, fatter (her word), have longer or shorter hair, and she said she would have long hair, unless she got cancer and it fell out?

What, if anything, would I find?

What would happen if I did a search for this: I was so proud of this same daughter when she played the lead role of Dorothy in the Wizard of Oz play at her school today, because she remembered all of her lines and wasn't shy at all, and I was proud of myself for finding the dress and the shoes, and I wonder what she will look like, and be like, when she grows up, so I couldn't help but just cry during the show, and not out of happiness but a real, deep, penetrating fear that I will never get to know her as an adult because I will die too young, but 30 seconds later I was laughing and joking with the other parents?

What, if anything would I find?

I don't know. I have finished searching for answers about breast cancer, at least for now. I am glad, however, that this strange rambling vehicle I'm using to express my thoughts has led some others closer to those elusive truths that it would be much better to never learn. In closing, I don't say this often enough--thanks for reading.

Day 288: Almost Normal

This has been a week of change in many ways. A change of pace, a change of scenery, and a change, or several of them, in me. I'm writing this from the north woods of Wisconsin, the only place we ever go on vacation anymore, and a place we haven't been to since the beginning of July. That means that the last time I was here, I had hair--lots of it, and I was a few days away from my first chemo treatment and I was terrified. It was summer, we went swimming, I had a tough time finding a bathing suit that didn't make my left breast ache so soon after my two surgeries, and Augie had just started walking.

Things have changed. It's winter, and even though we had a great thaw (60 degrees in Chicago yesterday, I'm told, though we missed it) to follow our great snow, word never got out up here that spring had arrived. Yesterday it was as warm as we could have hoped it would be, somewhere in the mid-forties. We got up here in record time--less than 6.5 hours, after stopping to eat and stopping for bathroom/diaper breaks--because Gabe thought we would be able to see the arora borealis. It turned out that the original predictions were off by a day, so they were visible last night instead of Wednesday night. It was so foggy yesterday that I could hardly see as I walked down the road that would have been pure mud if it wasn't pure ice. But then the fog cleared, and we kept looking for the lights, but the moon was so big and so bright that we couldn't see anything else.

I love the darkness here, and the stillness. I love how there is nothing to do, and everything is far away. No one is up here in February, so my walks become entirely different than they are at home. It's just me, and I don't run into anyone, or see any cars, or need to stop at traffic lights. There is no sound, except ice cracking on the lake if you get close enough. Tonight we parked the car right on Lake Lucerne so we could watch the moon rise over the water. It was the largest, brightest moon I have ever seen. It was so magnificent that young boys left the bar and walked out onto the pier to watch it too. Augie shouted "moon!" on the long drive home and Lenny said she liked when the moon went behind the trees because it looked like the tree branches were drawn on the moon itself.

So it's winter, and that is different. And I don't have much hair. Augie runs around like a madman, and he has just learned how to jump with both feet. The memory of him teetering around gingerly is as far away as the memory of me as a young mother with her whole life ahead of her, unafraid of the future. Lenny reads silently to herself in the car, until she pauses when we discuss going to our favorite restaurant on Lake Lucerne and she asks, "was the last time we were there before we knew you had cancer?" Oh my child. Don't let me forget that you haven't forgotten. What is there to say? Yes, you stayed home with Grandma when we went last summer so the last time you were here was before we knew I had cancer. OK, right, she said. These conversations are different than what I imagined discussing with my not-quite 5 year old. Moreover, my cancer treatment is, hopefully, or at least for now, behind me, rather than looming ahead of me. I have lost the things I was going to lose due to chemo, except for the fear of losing them again.

Because things have changed. After my breast felt like it caught fire 10 days ago, I started to notice that things were different in me. I didn't want to say anything aloud because I didn't want to jinx it, but my hot flashes started to diminish in quantity very rapidly. Then a day went by when I didn't have any at all. It happened just like that. Other things have started to return to normal as well. I feel my old sexuality coming back. All of a sudden, after being afraid I would be stuck in some kind of damaged body forever, I am almost at the same level of sexual function and desire as I was before chemo. I am not exactly like I was, but almost.

How did this happen, in the blink of an eye? I was desperate with hot flashes, depressed about my sex life, hating my hair, and now...things are coming back together. This is where you realize what a big gap there is between normal and almost normal, however. Nothing is as it was. And yet it's close enough that I just can't imagine having to go back and lose it all again, or worse, find out that my back pain really is something else and enter into a new abyss of advanced cancer treatment. I remember writing about the Flowers for Algernon effect when I was doing chemo. I feel like that now. I can feel myself coming back, my body coming back, and I think, how dare you try to take that away from me!

That's what I am thinking about now, how things are all of a sudden almost normal, which shows that they are not really normal at all. When things are normal, you don't think about them. You just live your life. I hate thinking that consciousness, that deliberate thought, is a sign of difference, and yet it seems to me that it is.

I had an experience last weekend that brought all of this home for me, and part of me wants to write about it, and another part of me knows that I will not be able to express what I want to say well enough and the whole thing will sound ridiculous. I will give the short version, and see what I can make of it. The gist is that while out on a girls night, a very drunk guy was flirting with all of us, and seemed interested in me in particular. He gave me his number, tried to take me away from the table, told me how pretty I was, what I great smile and a nice face I had, and all of that. I am not a fan of being hit on in bars, but the way this whole thing happened and the bizarre things he said to every one of us was entertaining. He told one of my friends later that he really wanted to talk to me, so I decided to talk to him right before we left. He asked, where do you want to go? Right here, by the door. Are you sure? I won't hurt you or anything, do you want to go somewhere else? No. OK. So he took my hands and looked at me and said, I know about your illness. I understand. My dad is going through this right now with non-Hodgkins lymphoma.

He said a lot of things. How he could look into my eyes and see my struggle and that's how he knew. That I was so beautiful, and he took my hair in his hands and said, and I love this. That I was a fighter, that it was something you really had to power through and you had to be strong, that his dad had been a fireman for 30 years and this is the hardest thing he had ever done and people don't understand.

Since I am writing it, I must remember it. But after he said the word "illness," it was like he was talking to me through a cloud. Here I thought I looked normal enough to "pass," that a guy might actually see me and think "she looks pretty good, " not, she looks pretty good...for a bald lady, for someone with cancer, for a sick person. But no, he needed to talk to me about cancer and bare his soul to me in that drunken way when people tell you personal things they would never tell you if they were sober. My friends were standing an arm's length away and didn't hear the conversation through the din, and I thought of keeping it to myself. I told them though, and I told Gabe the whole story when I got home. He said one thing that made me feel better. Something along the lines of, well, either way, whatever his intentions, he noticed you. People notice you and take an interest in you. There are worse things.

I wanted to run away from myself right then in that bar, from this cancer girl that I have apparently become. I have decided to tell myself that there were two things happening there--he was attracted to me in the first place, and then he figured out I had cancer. I want to believe that it wasn't obvious right from the beginning, that there is no red C on my forehead marking me for life. This might sound funny coming from me, the girl who walked around bald as a cue ball for five months, who never bothered to wear wigs and who only drew on eyebrows for a particularly bad two week stretch sometime in December. I never tried to hide cancer, or chemo. If people ask me about it I tell them. When we have a sub at the gym who doesn't know my limitations I tell them I can't do certain things with my arm or my chest. The male sub has never asked, but one of the women did, and I said breast cancer, and she looked at me with that look and didn't say a word. But after hearing that word Illness I felt so unlike myself that I didn't say hardly anything. I just let him talk at me, and I wanted to say, what if you had been wrong? And then I wanted to say, one of the only things about my appearance that hasn't changed from this is my eyes, and if you see struggle there, it was there before cancer. In the end I didn't say much though, and I acted like someone else.

I am that woman, and I was always that girl, who doesn't trust strangers, and I never let them near me. I have never in my life given my number to a stranger, except once when I was 14 years old and the 16-year old usher at a movie theater asked for it. And of course I didn't give this guy my number, but I let him touch me, touch my face and my hair and kiss my forehead. That is not me. I've been known to smack my own husband if I don't want to be messed with right then. I was just kind of lost in the absurdity, all over again, so I stood there. I've never had an experience where I received so many compliments--some that were normal, the kind that men give women when they are attracted to them, some that were much deeper--and felt so sad about it afterwards.

I guess that story isn't so short. I might regret putting that out into the ether, because I feel like I'm admitting to being some kind of freak at the same time that I sound vain and petty, but then again, I have always contended that I would keep it real here in cyberspace, so there it is. Every time I think I am going to have a normal experience, there is something there that says, not so fast. You have CANCER, remember? And it makes me tired. That is what scares me about getting things back--my hair, my sexual mojo, my ability to sleep without hot flashes. Even the things that are normal are reminders, because you just cross your fingers hoping you get to keep them for just a little while at least. I wrote once that I live my life constantly feeling like I am driving the getaway car. I am waiting for my real life to catch me, so I have to love these moments of relative health and normalcy while I can.

Sometimes when I am being hopeful I think about growing old. Specifically, I think about how much I always thought I would like being old. I will never, ever, believe that cancer or any of the other trials in my life happened for a "Reason," and yet sometimes I do believe that I should get to be old, just because I might be prepared for it. It's as if my body wanted to tell me what it would be like: Someday, you might not be able to walk, or go to the bathroom by yourself, or turn your own body on your bed. This is what that feels like. Someday, your brain might misfire, and the electric wires will get crossed, and the wrong things will happen. This is what that feels like. Someday you will have so many hot flashes that you can't sleep for more than an hour a night. This is what that feels like. Someday your hair will thin and fall out. This is what that feels like. Someday, sex will be something that other people think about, that other people can do easily. This is what that feels like. Someday strange men will compliment you for your strength of character and you will be able to let them touch you because you are so far removed from the normal sphere of attraction. This is what that feels like. Someday, you will have a terminal disease, or an illness serious enough that death is right there in the middle distance. This is what that feels like.

And how exactly does it feel? Somehow it is not all bad, but it is sobering. Older people are so aware of their bodies and what they can and can't do anymore. Perhaps I have been given all these glimpses into old age because my body knew it would never have a chance to get there. Perhaps I will get there. I would like to--I would like to put some of this knowledge to use. I would also like to play a lot of solitaire, and wear mis-matching clothes, and give men compliments the same way I give women compliments without worrying about it, and I would like to call my kids and grandkids who haven't talked to me in a while, and shout at my husband who can't hear me anymore, and go to water aerobics and smile at the young girl who just lost her hair to cancer treatment and showed up at the pool anyway, smile and ask her about her baby, tell her there is something else afterwards that is almost normal, run as fast as the water's resistance will let my aged body and tell her, yes, I know what that feels like.