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?

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