Day 637: Komen, Planned Parenthood, Women, and Sex

It would be impossible for me to ignore this entire Komen fiasco over the halted funds to Planned Parenthood, even though I would really like to ignore it. So rather than talk about Komen directly, or Planned Parenthood, or abortion or politics or pink, I want to talk about one specific topic:
Sex.
It has to be said—every aspect of women’s health, and often of women’s lives, is often reduced to this. We are sex objects at the same time that we aren’t supposed to actually like sex, or want sex, or make decisions about sex. Someone decides that an organization that provides a wide range of health services for women should no longer be given money, and the underlying reason (regardless of Komen’s overall goal to not give funds to groups under Congressional investigation) is that sometimes—after they have sex—women get pregnant when they don’t want to. If an organization that might save women’s lives is willing to accept this, it apparently does not deserve to exist.

And how does this happen? How do we get marginalized into talking about sex or sexuality when we should be talking about living or dying? Well, here’s an example of how that happens. We find out that we have breast cancer, and it is terrifying, and sad, and unbelievable. And then the world wants to save our breasts. Not US—our breasts. Our tatas. Friends joke about how they would definitely get them both cut off so they could get bigger and better ones for free. Doctors try to lead us to believe that deciding between a lumpectomy or a mastectomy is a “personal choice” that should be based on what will make us feel “more comfortable.” Nurses counsel us on dealing with our body image—or our husbands’ or boyfriends’ reaction to our new bodies—as if following the operation, we will be somewhat less than whole. Because something has happened to those beautiful breasts.

Or, the world wants to save our hair, to protect the world from the vision of a bald woman, through a relentless marketing blitz for wigs and hair coverings. Men cry when they find out our long beautiful red hair will fall out. Women tell us we are beautiful “anyway.” Everyone and their mother tells us “it’s just hair, it will grow back,” as if to say dear God it’s really not just hair, you strange bald freak, and boy I cannot wait until it grows back so I can look you in the eye again. The world even wants to save our faces. We are offered “beauty” classes to show us how to hide the discoloration in our skin left by chemo, how to draw on eyebrows where there are none, how to stop looking tired, how to stop—STOP IT GODDAMN IT! Stop looking sick!

And so often no one thinks, wow, she just lost a body part—she just had an amputation. That must feel different, that must be strange when you move your arm and notice something’s missing. No one says, I wonder if her head is just cold, perhaps I could knit her a hat? No one asks if it hurts, if you’re scared, if you’re still attracted to your husband.

Perhaps it’s too easy for me to say these things. I am sitting here now with a normal head of hair, a remarkably well-functioning body, the same face I’ve always had, and by God a decent looking pair of perky breasts of my own. A little scarred and tattooed maybe, a little dented in one place, but still perky, still mine. But I lost so many things myself, so many things—and none of it felt the way other people thought it would feel. I didn’t feel unattractive. I didn’t worry that Gabe wouldn’t want me. I didn’t think that being bald and scarred eroded my femininity. I thought I might feel those things, I anticipated those losses before they happened, but once I was in it, I didn’t feel that way at all. Because I really didn’t give a shit.

Because I had cancer. And I thought I might die. And I didn’t like being reduced to a perky set of tits, a beautiful head of hair, and a pretty face. I wanted to live and be healthy and know that my body could do the things it could do before I had cancer.

I wanted doctors to listen to me. When I said that chemo-induced menopause was the second most depressing thing that ever happened to me from cancer (after fear of death), when I said that my “impotence” (we don’t have a word for it for women, do we?) made me feel like someone else, when I said that having somewhat painful sex three times a week was unacceptable to someone who had been used to having wonderful fun sex every day, I wanted the doctors to look me in the eye and HELP ME. Not look away embarrassed, make sly comments about my husband, tell me he was a lucky guy, say just wait, tell me well now you know how it is for many women, or shrug and say at least you’re still alive. But Doctor this is crazy! I’m sure your husband understands. Excuse me, is he even here? Has anyone ever told a man dealing with impotence for any reason that it is irrelevant, unimportant, or the least of his problems? (For that matter, has anyone ever told a man with testicular cancer, well, you only have it in the one, but we’re going to take the other one too—you don’t need them to live? Has anyone ever proposed halting funding to clinics like Planned Parenthood because they provide vasectomies? Or pulled ads from NFL or NBA games because one of the players commits a rape?)

I wanted to think that if it is common for women with lumpectomies to have recurrent mastitis due to “mouth to nipple contact” (these MDs apparently can’t say “kissing or sucking your breasts”), someone could have told me that rather than treat me like I was 11 years old. I’m sure that husband everyone always seemed so worried about would have liked that too; he would’ve appreciated the opportunity to NOT pass on to his wife an infection that gave her a 103 degree fever, almost sent her to the hospital, required a 10 day course of strong antibiotics, and made her believe she had inflammatory breast cancer.

What’s more important in the medical field—infantalizing women by doing things like asking their husbands of 20 years to leave the room during breast exams because the staff is too embarrassed, or actually giving us good information and access to care? What person in the world, man or woman, thinks a mammogram is sexual? Why are men—often our closest confidants, the ones who shaved our heads, held our hands while we vomited, changed our bloody post-surgery dressings, and swabbed our hips with alcohol before they gave us painful shots to stop our white blood cell count from plummeting—not allowed in mammogram waiting rooms? Who really thinks that women will feel embarrassed to be around men in their hospital gowns when waiting for an exam that is excruciatingly painful and might tell you that you have a life-threatening illness?

Why is it always about sex?

Or never about sex, when you need it to be?

Women have breasts, and uteruses, and we are the only ones who get pregnant and we are generally the ones who get breast cancer. But as a society we have this need to see women as simultaneously over sexed (pole dancing for fitness, anyone?) and sexually naïve or incompetent (good girls don’t talk about those things!) We hammer information about pregnancy into teenage girls heads, push the pill on every 18 year old in the country, and don’t seem to care what the effects of such decisions are. We don’t care about the side effects, the link to triple negative breast cancer, the insane 80% rate of HPV infection among American women. (Can I get an Amen for being in the 20%? Yeah I was that kid in high school whose keys hung on a chain that said “No condom no way.” And yes, there was a condom inside that keychain). That’s why there are outcries against the only cancer vaccine that has ever been developed, because rather than focus on the amazing lifesaving potential, we are wrapped up inside someone else’s panties, worried she’ll do the wrong thing. I’ll say it again: Lenny, you can decide never to have sex in your life, or start having sex when you’re 13, and I will still love you and want you to live. I will not deny you access to Gardasil in order to protect you from your own hormones, your own desire, or your own life. I won’t do it.

Women are sexual beings, with sexual bodies. So are men. But men get to be just that most of the time—men. They are allowed to be fathers, husbands, friends, co-workers. And on the other side, so often, we get to be wombs, tits, hair, battlegrounds for other people’s repression or cluelessness or bullshit.

That’s what I see when I read an article about Komen and Planned Parenthood. I see myself, bald, tired, scarred up and tattooed, with no eyebrows, suffering from sexual dysfunction, walking around the streets of Chicago in my fashionable clothes, ignoring all the assholes staring at me. Walking around. Still alive. Still worth saving.

Day 358: Normal!!

Normal--that's not a word I hear very often anymore. I can't express my relief upon hearing those words when I got my mammogram results today. "Everything looks normal, except all the changes from surgery and radiation."

OK, so not normal for a normal person, but normal for a person with breast cancer.

You can't imagine how it feels to go through one of these scans after having breast cancer, especially in a situation like mine, where the only mammograms I've ever had in my entire life were the ones that ended up with a diagnosis of breast cancer. I never got to do the routine mammograms for a few years first. The first one I did was just to verify what was obvious to everyone in the room but me, selfishly steeped in denial upon looking at those three round circles on the ultrasound at 2:30, 3 o'clock, etc. The next mammogram was to look for additional cancer on the right, and that was positive, I guess, since nothing was found. Then, I had a mammogram after my first surgery to see if I would need another wire placed for the re-excision. That was when I had to go back four different times until I was bleeding, only to be told something strange showed up on the right, which wasn't true at all, but that didn't mean that hearing it didn't make me almost have a heart attack. I had to get all bad-ass on the radiologist and demand more information. I wonder what she thought on seeing this young woman with wild red hair, blood stains on her hospital gown, screaming and gesturing with her hands in the hair. I suppose it was something like Holy shit, I guess we should answer her questions.

I don't know how to have a mammogram that doesn't confirm cancer. I've never done it before, so I was so nervous the last few days it was almost tangible. Last night I hung out with Augie while Gabe took Lenny to gymnastics. Before that I picked the kids up and fed them an early dinner, but I barely remember doing it. After they went to bed we watched Salt (terrible movie--really terrible) while I surfed around the web trying to find a place to go to lunch near Northwestern with the hope that we would have some reason to celebrate. In reality I just needed several mindless distractions at once.

God was I nervous this morning. Talking nonstop on the entire car ride after we dropped the kids off at daycare (they got there so early they had to eat breakfast there and no other kids had arrived yet). Saying goodbye to Gabe when I was called back, asking him to wish me luck. Reading an old People magazine about Charlie Sheen and the Royal wedding (not together, unfortunately--that would be worth watching). Feeling a little angry that they actually got me back into the mammogram room so quickly. Wincing through the three images taken of my right breast. Almost crying through the eight they took on the left. At one point, the technician called me over to look at one of the images. See all of these metal clips in your breast? Huh, yeah, I see those. I vaguely remember being told they were in there but I didn't realize they were permanent. Yes, these mark your tumors. We watch this area most closely. It is way on the side of your breast, near your chest wall, so that's why I have to really make sure we can get to that difficult spot. I don't mean to hurt you.

Oh, I said, realizing she was actually apologizing to me. I'm not sure that's happened before in this whole ordeal.

Then I went back out to the waiting area until a radiologist's assistant called me back. I have your results, let's go into this room. I was shaking. Oh wait (psych!), this room is taken. Let's go to another one.

We started a long walk down the hallway and I felt like I was walking through quicksand. It was like some kind of Chinese water torture.

We got there and she asked me to sign a piece of paper. "Your mammogram doesn't show anything but the expected changes from surgery and radiation."

Wait, so it's normal? Yes, it's normal. Oh my God, I said, and I actually put my hand on my heart, a melodramatic gesture that I probably have never done before in my life. Yes, she said, you just need to come back in six months to have the left side imaged again. I'm going to take you over to Dr. Hansen now (my surgeon).

But my husband is waiting for me outside. OK, I'll get him. Is he Mr. Jacob? No, Sterritt, I said. Gabe Sterritt. Dave? No, GABE. And when you get him can you tell him it's normal? He's going to want to know. She looked surprised. Sure, if I have your permission. Jesus Christ, I wanted to say, do you think anyone in my situation would keep that news from her own husband?

While I was waiting for the surgeon a knock came on the door. Mrs. Jacob? Your husband is here. Is it ok if he comes in? Um, why the hell do you think he is here with me? I would have liked him to come with me for the mammogram itself, or at least to be able to wait near the imaging area rather than four rooms away. But I didn't say that.

The P.A. and surgeon thought everything looked great, my exam was normal, and they both asked more questions about my mastitis than anything else. Apparently, the surgeon was more concerned than she let on about that. I said that the redness was gone, the rock-like mass that was moving around inside my breast had dissipated. Gabe remarked that we thought it couldn't be cancer if it was that big all of a sudden, and she said, well, usually that's true. But it still concerns us. I'm sure your mind was going there. It happens, but it's not normal. Now your images look great, the breast feels fine.

And that's as normal as normal can be in this situation. Normal enough to warrant a celebration, since I had taken the day off of work to deal with the appointments. Gabe and I went out to brunch. Then I got a too-expensive pedicure and went shopping on the Mag mile. I felt so strange, so invisible, as no one knew I had cancer, and I saw all these hip women with hairstyles like mine, and no one gave me a second look, which was wonderful. The only cancer moment I had was in Victoria's secret when the associate asked me if I wanted a bra fitting. No, I laughed, I'm fine. She was very persistent. I wanted to say, I don't need to ruin your enthusiasm with a glance at my cancer scars and radiation tattoos. Instead I said, I know my size, and I left what used to be one of my favorite stores when I realized I couldn't wear anything in the place, since I can't stand underwire bras anymore due to the pain.

No matter. I felt better at the Gap, where some outrageously inaccurate vanity sizing led me to buy a pair of size 00 shorts. I laughed out loud again as I realized I was that obnoxious girl in the dressing room that makes everyone else roll their eyes: Do you have these in a zero? Tried them on, could take them off without unzipping them. Do you even make double zero? Those fit comfortably. I asked what the truly small women wear, the ones who are shorter than me or don't have hips, the girls who have never had kids. Well, we have kids sizes, she said. Right. I realized that at one point I wouldn't have been laughing in these different situations. I might have been annoyed, or embarrassed. I never did embarrass easily, even as a teenager, but now it's next to impossible to faze me. I mean, at one point I was walking down Michigan avenue completely bald with no eyebrows, window shopping, ignoring all the stares and whispers around me. That wasn't so long ago. Today, I was just another face, another body, another wallet walking down the street. I was normal.

So there it is. I'm almost a year away from diagnosis and I've been given a six month reprieve from hell. I will see my oncologist in three months, and I will still worry about this pain in my back and I will never be able to have normal aches and pains again, or at least not for a few years, and I will get mammograms every six months for years, but for a while I've got this knowledge:

I don't have breast cancer anymore.

And I'll hold onto that feeling for as long as I can, for as long as it's true. Here's to hoping that's a long, long time.

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 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?