Monday, March 28, 2011

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.

Sunday, March 20, 2011

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.

Tuesday, March 15, 2011

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?

Tuesday, March 8, 2011

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.



Friday, March 4, 2011

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?