Day 576: What You Don't Know Can Definitely Hurt You

Today's blog will be fairly short (for me), though not at all sweet. I think I'm going to use this opportunity as a PSA of sorts, one of my many "something is very wrong in the land of breast cancer" rants. I mentioned a few blogs ago that I had finally received a prescription for physical therapy, after having chronic pain, intense pulling sensations, muscle weakness and even tenderness to the touch in my chest and under my arm for a year and a half.

For some reason, the scrip said "range of motion and lymphedema" on it, which made my life somewhat difficult. I don't have lymphedema. I could get it at any time, but having that word on the order meant that the physical therapist I called initially wanted me to go to a lymphedema specialist for the evaluation. I had met this specialist at a ROW practice months ago, and I would have been happy to go to her (except it turns out she wasn't the best candidate for my specific problems after all), but her office is too far away. No matter, after the evaluation she said there was no reason I couldn't go to someone else--she wasn't concerned about lymphedema issues with me, apparently.

I learned that I still have range of motion issues with my left arm, but only about a 10% difference, which isn't significant. During the evaluation I was told that the tenderness I feel in my pec, and the muscle weakness, may very well be permanent. It has little to do with surgery and everything to do with radiation. That sucks, but it could be worse, I suppose. Some people get broken ribs, damaged hearts or lungs, or other severe damage from radiation. It's definitely no joke. The evaluating therapist said my biggest issue was likely scar tissue, which might be especially aggravating for me because I'm thin and small-breasted.

I'd like to take a minute for an aside here. I know I don't have big boobs, and I'm glad about that, actually. But when talking to breast cancer specialists, you'd think a B-cup is the tiniest thing they've ever seen. When I was growing up, B was the average size for women. Now it's C--everyone is either getting fatter, or everyone is getting implants, or something. It just annoys me to always hear this "oh well since you're so small, you will have this issue, and that one" etc. etc. Kudos to my acupuncturist who told me last year, "Katy, I see all kinds of people naked. You aren't that small." Amen!

OK that's out of my system. After the evaluation I signed up for 5 weekly sessions with a therapist near my office. She thought that would be enough. The first session was no problem. I warmed up on the "arm bike," which is just what it sounds like--you turn this wheel with your arms forwards, then backwards, for six minutes, which might as well be an eternity. It's not that it's hard, but your shoulders get fatigued, and it's BORING. Then I did a bunch of exercises on the foam roller. I can't tell you how much it hurts me--me! the one who can take a lot of pain, who does crazy amounts of exercise--simply to lie on that thing with my arms outstretched all the way. It's like someone is trying to rip my left arm off at the ligament. After some more stretching, she did some initial ART (active release technique--basically like extremely deep tissue massage--her specialty, and interestingly, NOT something the lymphedema specialist is certified in) work on me. This is the main portion of my therapy--trying to break up the scar tissue to alleviate my pain and help with range of motion. She was working on my pec, the muscle deep under my arm, and it hurt, but it was no big deal. After ten minutes of this I was done, given my daily homework for the week, and I went back to work.

Enter the second session this week. I got on the arm bike, but after that went straight into more than 30 minutes of ART. She said "now we're going to really start working on the scar tissue." I feel like crying just writing about it. I have had so much pain in my life, but damn. If I hadn't been lying down, that would have just brought me to my knees. She would use her fingers like a screwdriver, going deeper into my flesh and muscle than I thought possible, and then ask me to move my arm as far back as I could, or as far to the side, and hold it. It was absolutely excruciating. I was just gritting my teeth, holding on to the side of the table with the other arm, and she was very nice about the whole thing--offering me breaks, asking how I felt. Well my God, it hurts, I said. I know, she replied. I'm sorry. Well, I said, I've had worse pain. And that's true--but barely. I made her do the same thing on the right side a few times so I could feel the difference. It seems like it might just be the kind of thing that hurts, even if you're not injured. Wrong. It felt like an intense stretch, a strong pull, on the right side, but there was no pain.

So why was this killing me so much? In general, scar tissue hurts. Everyone knows that. I have a lot of it in my body, I suppose. I had gallbladder surgery, and organ removal leads to scar tissue, I'm sure. I have never noticed it. I had a lot of scar tissue that had built up after I first had a gangleon cyst operated on when I was 12; the cyst eventually came back, 20 years later, and the surgeon told me the amount of scar tissue was impressive--about as big as my whole wrist, even though the cyst was maybe an inch long. But here's where this breast cancer stuff gets just sick. My scar, as many of you know since I've posted pictures here, is on the side of my left breast, near the top. All of my tumors were located in that area of the breast, and taken together, they were about 3 centimeters in diameter. The surgeon used the same scar area when I had to go in for the re-excision. I can feel the scar tissue there, all lumpy and disturbing. That alone doesn't surprise me.

But get this--the therapist told me I have scar tissue all over the muscle that covers my rib cage and travels around to my back. When she was doing ART on the bottom of the side of my rib cage, almost half a foot away from my surgery site (you can see me pointing to the surgery site, compared to the farthest location of the scar tissue here), I asked her what she was doing. I'm still breaking up your scar tissue, she told me--you have it everywhere.


I was absolutely shocked. She started telling me how this muscle (the name is escaping me) is attached to the pec muscles, that every time I use my arm or my chest I would feel pain from the scar tissue. She said "no wonder you can't do pushups." Honey, are you kidding me? How have I been doing half the things I've done?

Now I know I'm not crazy when tears come to my eyes when Augie jumps onto my torso. Now I can give myself a break for not being able to do extended planks, chest flys, or pushups, for wanting to cry that day in ROW practice when we did the one-handed oar drill and I thought my chest was literally going to break.

So, obviously, I needed physical therapy. And boy does it piss me off that I had to wait so long to get it, that I had to ask a hundred times, that I had to practically make shit up ("It stops me from doing yard work" is a bullshit line, but effective) to get anyone to listen to me. I am not an idiot, nor a child. I understand that I don't have to do certain strength training exercises to live a happy, healthy life. But I also know that I used to be able to do things that now make me double over in pain. I used to be able to lift things over my head. I always preferred to sleep on my left side, and now I can't do it. The muscles affected by breast surgery are the same muscles that you use with literally every step you take in your life. A PT evaluation should be the standard of care. Some women wouldn't need it--fine. But I'm sure a majority would benefit from it, and some, like me, REALLY need it.

As I was trying to wince the torture away (I told someone that it hurt so badly it was like going through labor--through my chest wall), I asked the therapist what kind of patients she usually sees. Oh, not much post-surgery. Lots of tendonitis, people with back pain from having desk jobs. Huh? I asked. How do people get scrips for that? Don't we all have the same issues with sitting at a desk? Oh, they tell their doctors, and get the prescription. We see pregnant women who just want some back work, people with mild carpal tunnel; I see it all the time.

Well excuse me if all I ever had was CANCER and I was crazy enough to think that warranted some assistance. These surgeons and oncologists have to start looking beyond whether or not you're still breathing, stop focusing on how close you are to death's door, and get a clue. If you want me to believe you when you say you think I have a good chance to live a normal lifespan (good--not great), then think about this: I could be dealing with this shit for 50 years. I have the right to be able to function normally without intense amounts of pain that I guess I have just accepted, just folded into my daily life.

What a bunch of crap! Anyway, I just wanted to put this out there in case any women who have had breast surgery, or are facing it, come across it and read it. I think it would be worth it to get a pre-surgery evaluation, so you understand your range of motion beforehand. And if you think you have an issue, just push it--no one else cares as much about you as you do, and no one else will advocate for you. Your problem might be even more severe than you realize--you could have scar tissue adhered to the muscle and bone of half your torso, apparently, and be walking around like it was nothing. You get to bitch about this, because you had cancer, and in many situations you get to do what you want, because many things that you wanted to do were taken from you, so whatever's left is yours to claim. You can even put pictures of yourself online wearing footie pajamas. Why not? Who's going to say anything? If anyone tries to give you shit, realize that there's a lot of shit you've already taken. Enough's enough!

Day 280: Kiss to an Absurdity

It's been 280 days since my diagnosis, and exactly two months since my treatment ended. Cancer feels so new at the same time that it feels like something I have always had. In some ways I'm still in the middle of everything, as cancer is one of those gifts that keeps on giving. I've been having a tough time lately, though I know that's not what I am supposed to say right now. What makes it even harder is that sometimes I feel so normal that the reminder of everything that cancer means just causes an almost palpable ache.

I will admit, though it's hard for me to do so, that I have been an emotional wreck over the last week. Some of it might be hormones, but much of it is fear--waiting for that first mammogram which I was supposed to do two weeks from today, worrying about my hips and my back, which has been hurting in one specific location in my spine for days. I know that there are people reading who are thinking, just get the damn bone scan already! Yet every time I am convinced I have cancer in my spine, the pain goes away, or a doctor tells me not to worry, and then I don't know what the hell to do. The scans are nerve wracking and they're a lot of radiation in and of themselves, so you don't do them lightly. I still haven't had sufficient reason to schedule one, and I will admit that the very thought terrifies me. I just can't handle the thought of metastatic cancer.

The rest of my mood is just sadness, and tiredness, especially related to menopause. The hot flashes are much better, though they're still there. I'm down to using the estrogen cream twice a week, but even on off days the flashes are manageable. It's the changes in my sex life--or not even my sex life itself but the way that I experience it--that I am just not going to get used to anytime soon. Things have gotten better, but I feel like such a different person, an older person. It's hard to relate to people my age about this, in part because many people just look at me like I'm nuts because we do have such an active sex life for parents of two little kids, and other women have always had these problems, or never had much libido, or whatever. The other day I was feeling so down about this that I momentarily decided that I should just give up on having sex for the rest of my life, since it often makes me sad and reminds me what a toll cancer treatment has taken on my body and my sense of self. Then I thought, but that's not fair to Gabe, so he should find someone else, at least for the sex part.

These thoughts are not rational, and they don't stem out of anything tangible in our lives, as we have been working through all these changes pretty damn well. I know that. Gabe was not pleased to hear me voice these thoughts. We got in a big fight, the kind that couples get into that you instantly regret because you wonder if there's any going back. I ended up admitting to things that are hard for me to admit. I feel unattractive, regardless of what Gabe says. I interpret his life-induced tiredness as lack of interest in me because I am now a strange-looking cancer patient rather than a sexy young wife. Worse, I just feel "less." Less like me, less like a woman, less like the person he promised himself to years ago. Gabe had to admit that sometimes he does feel differently about me, because he worries about losing me and he never did that before cancer. But he still loves me so much, and he thinks I look even prettier now because now he can see my ears, and I am still sexy, and I will live to be old, and all of that. And yet.

We are sometimes walking an emotional tightrope around here, afraid to fall, afraid to look up, afraid to do anything but just look straight ahead and assume we will get to the end in one piece. It's hard on a marriage. On the other hand, it's hard on a marriage to have little kids, especially when you both work full-time. That's enough. This is just that much more. I so want to relate to my girlfriends about the normal stuff. And I can--I can bitch about work and my husband and the "balance" and all that but then in the middle of the conversation I just blank out and think about, well, dying, and then I feel very alienated because clearly something is wrong with me.

I hate when my mind goes all morbid like that. For example, Augie has become obsessed with babies. He loves them, loves pictures of them, and is using his new-found verbal skills to talk about them all the time: Baby! Bottle? We ask him, who's a baby, and he says Me! (This is one of my favorite verbal development stages--when they figure out who "I" or "me" is. What an amazing concept--you can see the recognition in their eyes and it reminds you that we are all an abstraction, all some kind of dream waiting to be spoken). So we indulge him. But then cancer strikes. Gabe was showing him a documentary about babies and mothers around the world. I would normally not even pay attention to something like that, but this time I couldn't stand it. Watching all these glowing pregnant women, happy nursing women, seeing all the newborns. My body doesn't even work well enough to get pregnant, even if I had permission, even if I could ever nurse again. It reminded me of what I had lost and I just started crying and had to tell him to turn it off. Then my son cried "Babies!" and I felt guilty on top of it all.

Cancer brings you to these dark places sometimes, and it's not always for the reasons that you imagined when you were just desperate to get through the treatment. Feeling old is hard when you're 35--there it is, I said it. Maybe that's not a strong, brave, inspirational thing to say, but for me, it's true. I know it could be worse. I know I could be dead. I know that I'm not actually old. But I feel like my body has aged 20 years in less than one year, and that feeling is made tougher by the fact that my short hair apparently makes me look younger. I keep getting carded or hearing people gasp with shock when they find out I'm 35. It reminds me of the compliments I got when I was bald and how those made me feel: Thanks! and Ugh! If only you knew. I used to believe compliments at one time, and I could respond to them graciously. These days I just feel like someone is making a joke, or worse, it makes me think about death again.

I look so young, I am so young, right? How could I be so close to death? Is that really waiting for me? I hate that aspect of cancer. With something like an accident, you realize that you've lived through it, and you can move on. Now there's just some cancer demon lurking, waiting, messing with you, maybe inside you right now and you don't even know it and you won't ever know it until it's too late. So someone says, your hair is really growing back, it looks great! And you're thinking, hair is just dead stuff, but you say thanks, and talk about getting your first haircut someday again just like you're a child.

I wrested myself out of the darkness eventually and I have felt better, though the cabin fever has been compounding the issue. When we left the house today it was -7 degrees. I took a walk through the tundra yesterday for the first time in days. I made it a few miles to the glasses place, where I picked out some kids frames for my tiny face. First, my face had to actually defrost, and then I could focus on the specs. I've decided that with short hair, I just need to focus on style a bit more. When these glasses come in I'll have Gabe take some pics and you can let me know if they look decent. In the meantime, I am dying to go for another walk. The last walk I took before yesterday was on Sunday, and I was crying the whole time because last weekend I was in the middle of the darkness. So my face froze then too. I need a good long walk without icicles or near-frostbite going on, you know?

Because it's tough to go outside, I've been working out more indoors. I've gone to pilates twice this week, the gym at work three times, and rowing once. No water aerobics this week as they're closed. None of this is out of the ordinary for me, and yet I'm thinking about it now and wondering if I did something to hurt myself. All of a sudden on Tuesday night, I had one of the most stressful things happen in this whole cancer experience since I found the first lump, and I am still searching for an explanation. I would almost be happy to blame myself, if it meant I understood what was happening.

My breast was suddenly extremely painful, swollen, and hard. It was red in places. The entire breast felt like a tire. I have a lot of scar tissue on the side, where I had two surgeries in less than three weeks, and that makes it next to impossible to feel lumps in that area. That makes me nervous but I've gotten used to it. This was the ENTIRE BREAST, with huge, golfball-sized lumps inside. The pain was unbearable. I tried aspirin, hot water bottles, massage. I asked Gabe what he thought. He definitely didn't think it looked or felt normal. I left panicked messages for my surgeon and did a million fruitless searches online.

I have had pain in the surgery area for about a month. It has never quite gone away in the past eight months, probably because the amount of scar tissue from both surgeries is pretty significant given the size of the surgery area. Radiation made the pain worse, and I was told this is normal. (I hate it when doctors tell you it's normal. Common, maybe, but none of this is NORMAL). I feel twinges or tightness in my arm sometimes when I work out or carry groceries or lift Augie. But I have never felt something like this. It scared the shit out of me.

I got a call Wednesday morning letting me know I could see the P.A. that day or the surgeon herself today. I took that as a bad sign, actually, so I decided to wait a day and see the surgeon in person. I'm sorry, but a P.A. just doesn't cut it in this situation. Why was I upset about learning I could see the doctor right away? You have to understand that these people are booked for months in advance, especially my surgeon and my oncologist who are the head honchos and leaders of their fields at Northwestern. You're telling me I can see her tomorrow? Good god, am I dying today? Then her nurse called me back later, saying not to worry, but I could come in Friday to see the P.A. She sounded almost annoyed that I had an appointment with the surgeon because she "has a lot of appointments and is going on vacation soon." I guess there is some lack of communication at the hospital and she didn't know I was put on the schedule. I was very nervous, which always makes me feel frustrated with people, and I wanted to say "Well I'm sorry that my CANCER puts a crimp in the schedule! What is vacation like again? I don't really remember!"

I didn't say that, obviously. I tried to be productive at work, I tried to think about other things. Then I went in and saw one of the P.A.s, who literally seemed stumped by what I was saying. My breast is much better than it was on Tuesday night, though it still hurts and is red in places. Unfortunately I couldn't have them feel what it felt like that night. We should have taken a picture. The swelling is down and it is mostly lumpy and hard near the surgery site, rather than all over. The part that hurts is actually away from the site a bit, which is what led her to say "I'm puzzled. I'm going to get the doctor."

This is not a way to make someone feel relieved. The doctor came in, did another intense breast exam and said, "well, that doesn't feel like cancer to me. I don't feel anything that makes me concerned but of course we don't know without imaging." Thinking about the fact that three doctors weren't concerned about what turned out to be three cancerous tumors, I asked a million questions. Could it have been fluid? Maybe. Could it be related to exercise? It's possible. Can this be caused by radiation? Yes, there is even something called radiation recall, where if you get really hot (were you in the sun recently? what sun? I don't go on vacation, remember? all I can hope for is a few days away from cancer and I haven't even had that yet) the area that was radiated can have an extreme reaction. Oh, is that what this was? I don't know.

I just didn't feel reassured at all. Then I got what seemed to be some strange advice. I was supposed to go in for a mammogram in two weeks, and I have been psyching myself up for that. I won't even attempt to explain what it's like to think about these follow-ups because it is impossible to understand unless you've been there. But the surgeon wanted me to cancel that mammogram, which was just for the left side, and reschedule for late April or early May for a bilateral mammogram. Huh? I have some insane issue and you want me to wait two more months to get it checked? She said I could still do the first scan in two weeks if I really wanted to, but then I would be off schedule forever for getting scans.

This left me a little speechless. If I wasn't supposed to have this one, why was I scheduled for it? Do you think I know what the hell I'm doing? I've never had cancer before--maybe you could tell me what the right schedule is! Moreover, this is not a general physical. This is a very emotional, physically uncomfortable and for someone with scar tissue and radiation issues, a painful procedure. On the one hand, I sure as hell don't want to go through more than I have to, if only to avoid the extra radiation. On the other, you're telling me to wait almost three months to find out if I have cancer? What if my breast goes nuts again? I can't feel anything under the scar tissue--there could be a 5 cm tumor in there for all I know. The only thing that distracts me from that thought is the very specific pain in that spot in my spine. Neither is ideal.

So there it is. What to do? Wait, or not? I decided to cancel the earlier mammogram and wait. I might regret it, but that was the doctor's recommendation, so I'm assuming if anything was dire she wouldn't have put it off until then. It just makes me so tired--I thought I was past the point in my treatment where I needed to make a bunch of decisions. I thought I was entering into the "new normal," but normal still seems pretty damn far off in the distance. I thought I was somewhere near "done."

And while I'm not near done with cancer, I am near done with this blog for the night. I always read these back to myself before I publish them, and after reading this now, I have two thoughts. One, it does make me feel better to get some of these thoughts out there. It makes it somehow less cryptic in my own mind, even if it seems crazy cryptic to those reading. It also makes me feel a little satisfied with myself for admitting to some of the really difficult aspects of living with a cancer diagnosis, because so much of what is out there about cancer and treatment for cancer focuses on the hope/inspiration/shut up you're lucky to be alive/it's too difficult to hear about that stuff.

The second thought is about facebook. Where the hell did that come from, you ask? Well, I have said before that I think that this blog can alienate me from people in the real world, because I come across as morbid or depressed or something when in real-life encounters I am almost alarmingly normal for the most part, at times even funny, and entirely capable of talking about everyday, and yes, banal, things. This blog is a gift for me but a cross as well, as people rely less on face to face interaction with me because they "know" about me through this medium. Of course, all they know is how I feel about cancer at the time I'm writing the blog, and that is a very limited scope. There's not a damn thing in here about anything else about me because I am writing this to get through cancer, and as selfish and short-sighted as that is, that's all this blog will ever be--just that piece of me. And yet I've heard many people say "well, I don't need to call you...I read the blog."

Isn't that what social media has done? Made us believe we are connected by cutting us off from each other in real life? Some people think that, though I am not so sure. I think it's amazing how something like Facebook has enabled me to link to something like this google-based blog, which puts me in touch with not only people, but a part of myself I would have abandoned--the creative writing part--if some tech geeks hadn't made it easy for me to use. What a world!

This is a much longer essay, I realize. It's on my mind because we finally watched The Social Network on netflix last night, and besides finding everyone pretty damn rich and entitled before the company even took off (what 19 year olds have family lawyers, or $18k of their own money?) I was left with mixed feelings. Even if the whole movie representation is a crock, I still can see both sides. It would suck to get screwed out of all that money. On the other hand, just having an idea that you have no clue how to turn into anything real is not that impressive. If I could become a billionairre off of ideas alone, that would have happened a long time ago. Someone has to actually figure out how to do the things I think about, and maybe they deserve to be rich if they can do that.

Regardless of what side you take, that movie would make anyone hate Facebook, and America, and even crew teams. I think I must be coming out of my recent depression because instead of hating anything, it made me think, hey, that rowing does look awesome, I hope I get to go on the river soon! And, hey Mark Zuckerburg, did you ever think your idea for voting on hot coeds would be used by a bald, tattooed cancer patient to tell her friends and family about her menopause and swollen tire of a breast? I bet you didn't. But hey, that's America, right? We do many things well, and I do believe we specialize in the absurd. I'll end on that thought, though D. H. Lawrence said it much better than me:

“Reason is a supple nymph, and slippery as a fish by nature. She had as leave give her kiss to an absurdity any day, as to syllogistic truth. The absurdity may turn out truer.”