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 477: Post-Cancer Exercise Modifications (And Other Life Lessons, Because I Can)

Now that I’m more than a year “cancer-free,” I often find myself questioning the purpose of this blog. Is it to leave my children a reminder of who their mother was if this shit comes back to haunt me and I don’t make it? Is it a platform for ranting? Is it just an excuse for me to write somewhat creatively every once in a while? Is it to tell something of my absurd little story so that some other young woman going through similar things doesn’t have to search the internet in vain for advice?

On the off-chance that the answer is anything approaching the latter, I’ve decided to do my own completely un-scientific, not based on any knowledge of sports medicine, list of modifications for working out during and after breast cancer treatment. You are supposed to stay active to save your life, lower the risk of recurrence, etc. etc. For those of us who were extremely active BEFORE finding out we had breast cancer, we might be somewhat skeptical of this. This doesn’t mean we won’t continue to exercise, even manically, under the assumption that we are doing what we can with what we’ve got to fight something no one really understands. It just means we wonder sometimes.

Before I got pregnant with Augie, and hell, during most of the pregnancy itself, I exercised for about three hours most days. That was partly because I was annoyed at how hard it was to lose weight after Lenny was born (out of whack hormones, related to breast cancer, perhaps?), and it was partly because I was frustrated at being unable to get pregnant for a while (again, with the hormone imbalance). I figured, if I’m not going to get pregnant, I’m going to get skinny, damnit. But mostly it was because I learned years ago that if I don’t get a lot of exercise, I can’t sleep. And when you are a chronic insomniac because your body is begging you to move move move! all the time, it gets tiring, literally and figuratively. Exercising compulsively is good for me; hell, it probably saved my marriage. When people remark on how Gabe must be really understanding because I get up super early all the time to work out and he is in charge of getting the kids up, I think on the one hand, well, they’re his kids too, and on the other I think, you have no idea. If I go early enough, the entire family hardly knows I'm gone. Besides, Gabe is all about me exercising. If I get four or five hours of sleep a night, I’m actually fun to be around. He’s my biggest workout supporter.

So I exercised like a nut for years and got breast cancer anyway. I don’t know that exercise will do anything to save me from cancer, but it doesn’t matter, because I like to do it anyway. Besides, I have a lot of very small clothes in my closets (yes, I use up a lot of the closet real estate in our house) and I don’t want to get new ones. Anyway, I continued to exercise to the extent that I could after two surgeries, and during and after chemo and radiation. I started new routines, took up new activities. My co-workers who saw me waddling into the gym 8 months pregnant saw me slowly walking into the gym when I was straight-up bald and going through chemo fatigue just a little over a year later.

Though I kept at it, I got frustrated by what I couldn’t do, and truth be told I am still frustrated. My left pec still hurts, making chest exercises difficult. My breast hurts as well, 14 months post-surgeries. I have an insane amount of scar tissue, and today I left the gym early because my boob was just killing me beneath the scar and I didn’t think it would be advisable to sit there holding myself in pain in the co-ed class. Mostly, I still have issues with the extension of my left arm. I can extend it all the way above my head when my hand is empty. However, I cannot easily bear weight on that arm when it’s extended, either with free weights or the weight of my own body. Doing this leads to chronic and sometimes scary pain in my pec, breast, and arm. I’m half-convinced that overdoing it with my arm and chest is part of what led to that awful mastitis I had over the winter, though the docs all said that's not true.

So I’ve learned a few things through trial and error, and though those things are specific to me, I’ve decided to share in case anyone finds them useful. I will insert a caveat though: If you have had breast cancer and you try these things and you injure yourself, don’t blame me. I’m a business economist, not a personal trainer, so listening to me is probably not that advisable. I’m just a really opinionated business economist, so here goes Katy’s list of “if you have breast cancer and would like to exercise, but you can’t do this, do this other thing instead:”

Can’t do:

1. Push-ups. Do planks instead. You might be weaker in the chest, but somewhere underneath it all you will get a core of steel. (I like to eat, so there won’t be any 6-pack on this body anytime soon, but I know those muscles under there are strong!) I have accepted that I might never be able to do push-ups. This is ok—it’s not a necessary condition for a happy life, after all. The main issue in a classroom setting is to not distract anyone else by standing or lying on your back, bringing attention to the fact that you are being a smart-ass and not doing push-ups. So plank it as long as you can hold it.

2. Overhead tricep extensions: Easiest modification of them all: just do kickbacks instead. Same benefit, much less pain.

3. Lat pull-downs: do these straight in front of your chest rather than with arms overhead. This works different muscles, but it still works. You are not sitting there with your sorry ass on the couch, so go ahead. Today the gym intern made a general comment, knowingly directed at me, while we were doing this: “Make sure your arms are ALL THE WAY OVER YOUR HEAD.” The gym manager glanced over at me quickly. I gave her a reassuring look. No need to bring breast cancer into this 22 year old girl’s state of consciousness; I can take the criticism in stride. Now in general, I have finally graduated to being able to do normal lat pull-downs overhead, but I have to use smaller weights or a tube with less resistance. Today my breast hurt, so I just modified and held my arms straight out. Follow your instincts.

4. Squats/lunges with weights for strength: When I first told my gym instructor that I had cancer, she said she would work with me on modifications. She said, some things you won’t be able to do, but other things you’ll always be able to do, like lunges. This is true. Breast cancer does not affect your legs (unless chemo makes you too weak or gives you extreme neuropathy or spreads to the bone, of course). My issue was that I always held two 10 pound weights for extra strength. Post-breast cancer, until very recently, I could not hold the weight straight down at my left side without hurting my arm. So I used ten pounds on the right, five on the left for a while, and totally destroyed my back due to the imbalance. Then, for months I used a lighter (12 pound) medicine ball instead, holding it right out by my belly so my arms were bent. That way I got the benefit of the weight-bearing exercise but I didn’t wreck my arm. I have recently graduated to using weights again, albeit 8-pounders.

5. Rows: Here the modification depends on your injury. If my general chest/breast issue was the problem, I would just do something else entirely, like crunches. If my chest was feeling ok but the arm was giving me trouble, I’d do the row, but with less weight/resistance, and alternate. Today I can usually do them normally.

6. Chest-flys: This is just not advisable soon after surgery. Your breast will feel like it’s on fire. It ain’t worth it. If your class is doing this while lying on the ground or a ball, do regular chest presses but with lighter weights than usual. If that still hurts, sit on the ball, or kneel on the ground (again, try to be less distracting to folks) and do hammer curls instead. I always default to planks or bicep exercises when I can’t do something else. All is not lost; you will at least have those Michelle Obama arms going on. (Here’s a shout out to my husband, one of the few men in America who really likes and cares about women’s arms. I live with comments like “Damn your arms are looking hot baby!” Is this normal?)

7. Side planks: Again, not very advisable on the affected side. If you’re up to it, do the plank on that side on your forearm (I always do side planks on my forearms, not extended arms—these are really hard for me on either side, cancer or no) but rest your weight on your knees rather than extending your legs out and up. You will still work your obliques. If that doesn’t work, do a regular plank.

8. V-ups: Don’t do it. This is just kind of unnecessary if you ask me.

9. Shoulder raises: do these exercises—I think it actually really helps with range of motion after lymph nodes are removed. Just use tiny weights if it’s close to post-surgery. Or don’t use any weights at all—the motion of moving your arms straight ahead or straight to the sides is good for you. If anyone looks at you weird because you’re doing a side raise with invisible weights, just give them that death stare with your big eyes that look scary underneath that bald head. That’s what I did, and believe me, it works.

10. Dead lifts: This seems obvious, but if it hurts your affected arm too much to hold your arms "dead," just bend at the elbows and hold the weight by your chest. You will still work your hamstrings and stabilizers.

11. General weight-bearing exercises or arm exercises: If your arm bugs you, use less weight. This is common sense; don’t do what I did and use the same, higher weight on the “good” side because you think you have something to prove. You will get strong muscles on that side and then your back and shoulders will kill you. So use less on both sides. This is not a contest.

12. Running: I have no advice here. I hate running. I even had trouble walking right after surgery because any motion or bounce was excruciating in my breast, though I’m small-breasted. I still took long walks every day, however, and suffered through it. Sometimes that’s the best advice, I suppose. Just suffer. It won’t last forever, probably, or at least theoretically.

13. Swimming: don’t listen to me, listen to your doctor and his or her advice on getting wounds wet, contracting germs, etc. I stopped swimming and doing water aerobics during the latter half of chemo and for all of radiation (it was forbidden during radiation). And no, I didn’t get fat.

14. Pilates or yoga: do these, especially during chemo and radiation. Now those who know me know I hate yoga. I need to be doing something faster or else I get bored, so I did pilates several times a week during treatment. The point is, your joints will hurt at different points during chemo, and your skin will feel tight and painful during radiation. You will be crazy tired, not tired even—fatigued in a way you didn’t know was possible. The overall body work and stretching with pilates and yoga will help. Trust me. If you need to bow out of certain exercises or poses, do it. Just pick a studio or class where people aren’t judgmental jerks and you’ll be fine.

15. Lifting heavy things: don’t be an idiot. If the heavy thing is not your child about to be hit by a bus, it probably doesn’t need to be lifted by you while you’re still recovering. Not today, maybe not ever. Just flirt with some guy and he’ll do it for you.

16. Getting out of bed: hey, if you can’t do it, you can’t do it. Your muscles won’t atrophy in a day. Let your husband/mom/neighbor/friend/cousin take care of the kids or the chores, and get up tomorrow, or later tonight. Watch some stupid shit on tv. You have cancer. You don’t have to follow the normal rules.

Wow, it felt kind of good to get all that down. This makes me think that I should write down some other general-life breast cancer modifications:

• Underwire bras: Just chuck them. I was the lingerie queen, the girl who wore matching lace bras and panties when I was 14. Breast cancer put the kabosh on all that. Wear soft-cup bras, or nursing bras even. Don’t wear one at all if you don’t have to, but I would say that the more your boob hurts, the more support and compression you actually need, even if it sounds illogical. I know this bra advice doesn’t work for women with mastectomies. Sorry—I didn’t have one, so I have no clue and won’t pretend that I do. My boobs are basically the same size and shape, which makes me think that the large amount of tissue that was removed on the left was just replaced by scar tissue and firmness from radiation. So I can wear cute bras now, but no underwire.

• Food and nutrition: When the kind nutrition specialist meets with you during chemo, listen politely and then laugh when she walks out the door. When all of your well-meaning friends tell you what you should eat to maintain energy, smile and nod. Your job is to eat whatever the hell you can so that your weight doesn’t get too low and your body can safely absorb the poison. If that means you eat only pudding, or you eat weird things like Frosted Flakes and fresh spinach (my chemo dinner of champions), so be it. When I got down to 110 pounds after my first round of chemo, from 117, and everyone worried about me, I listened to them tell me I needed to ingest more calories, that I needed to eat more than fruit and rice. I secretly thought, screw you. I have CANCER. I’m doing CHEMO. I’m not going to starve to death; eating is the least of my problems. I will eat what I can stomach and worry about the right diet later. Your body helps you with this process. I actually craved goat cheese and spinach all the time on chemo. These things are mild and have protein and if you eat them, you will be fine. Your body isn’t stupid. Whenever I complain about the little pooch I have on my stomach, Gabe first scoffs and asks what the hell I’m talking about. Then he says women are supposed to have some softness, that’s supposed to be there, if you have nothing what would protect you from famine? (Can you tell this line of argument comes from a guy who was often hungry as a kid?) At 110 pounds, I went back to that thought. I said well shit, here it is. This is my chemo famine. My body will protect me. And it did. I got weaker, but not too weak. I made it through.

• Sex: do this as often as you want, as vigorously as you can, if and when you are able. If you are in the nadir portion of chemo, you might want to abstain for a few days, lest you get motion sickness from the act itself (don’t laugh, ya’ll know that happened to me). If you go through early menopause due to chemo or surgery, use silicone-based lube. All the other stuff just doesn’t compare, and no one will tell you this. If you don’t have an understanding partner, dump him or her. It is that person’s job to modify and figure out what works for you so you can enjoy sex again. If you are lucky like me and you completely come out of menopause to be a woman with monthly (if irregular) cycles and a surprisingly high sex drive, say hallelujah and have fun! When doctors and friends tell you that sexual problems are the least of your concerns, that at least your husband still wants you, or some other bullshit, realize that at that moment in time, those people are assholes. Maybe not all the time, but right then, they just suck. It’s important—don’t let anyone tell you otherwise. Nothing—not having cancer, not weaning my son, not being bald, not mentally preparing my own memorial service—made me feel as old and depressed as the sexual changes I went through from chemo-induced menopause. The fact that I came out of it is something that I revel in every day, or at least every other day, depending on how tired Gabe and I are that week.

• Parenting: don’t try to be superwoman, or the parent who protects her child from all things cancer-related, or the one who is saintly in the face of tragedy. Don’t be a martyr. No matter what you do, you will never protect your kids from knowing you have cancer, or from knowing that cancer is very very bad. So just be the parent you were before, to the extent that it’s possible. If you didn’t do crafts with your kids before cancer, by God don’t start doing them now. Your kids will really think you’re dying (at least that’s what mine would think). Modify your expectations of yourself and what you can do as a parent on a daily, or even momentary, basis. I received so much conflicting advice about what to tell Lenny; no one could have suggested that I just tell her the whole thing, kit and caboodle, in the middle of dinner, starting with, are you wondering why the phone is always ringing? No one could have predicted our collective relief when it was out in the open. Similarly, no one could have prepared me for the moment when my hand was shaking too much to feed Augie his lunch last July. I was utterly shocked that I couldn’t do it. But shit, the child needed to eat. So I put my elbow on the highchair tray, steadied that arm with the other hand, and fed him. He’s a crazy little bruiser now, so no harm, no foul. All I'm saying is, if luck is in your corner you will live a while after this, at which point all the other things are but minor considerations that your kids will one day forgive.

• Moods: Do not expect to keep everything together all the time. Cancer taught me to carry Kleenex in my purse. If my body wasn’t too bone-dry on chemo to physically cry, I just wept all the time, for months. It was like an alien being had invaded my stoic little body. This might manifest differently for you. You might feel angry, or hollow, or manic, or terrified, and all these things might come out of nowhere. Don’t begrudge yourself this new aspect of your personality. The rest is still in there, but you just got buried under some massive bullshit and you need some different tools to find your way out. So again, cut yourself some slack.

• Hair: Let it go. Literally. Being bald isn’t that bad. If you do decide to wear a wig or a scarf, make it a point to learn to study your face. You will see it with more clarity when there’s no hair to distract you.

• Friends: keep some. It’s important. Maybe they’re old friends you haven’t seen in years, maybe there are only a few you can really count on when the shit hits the fan, maybe there’s only one person who still treats you the same. It doesn’t matter, just keep those folks close.

• Ridiculously insensitive or just plain weird comments: Let them slide. People are clueless in general. When it comes to something like cancer, especially if a young person has cancer, the whole of the world seems to take leave of its senses. You must modify your reactions to these people, mostly by acting as if they are not even there. “Hell no, you’re bald!” “All of my aunts died from breast cancer.” “Your head isn't shaped funny, at least.” “You look great! I wish I could lose weight that fast!” “You have breast cancer? Your boobs look nice. And symmetrical.” “Oh. That must run in your family.” I mean seriously. If you have to physically shut your own mouth to stop that witty reply from coming out, do it. Unless that reply is my personal favorite, in which case I give you permission to respond to a compliment on your looks with “Thanks, but I don’t have cancer of the face.” It’s great to still feel beautiful while going through this crap, but as the last picture here attests (taken a few days after my first surgery), breast cancer is one hell of an ugly disease.

And finally, don’t modify too much. You have cancer, or you are recovering from cancer and its treatment. You’re not dead, not yet, at least. Keep exercising, eating, sleeping, hanging out with your kids, talking, having sex, working, bitching in cyberspace, all to the extent that you can for as long as you can. If nothing else, you’ll get some of that weight of the world off of your chest. Even if said chest is bruised, or scarred, or burned, or tattooed, or lopsided, you can get some of that weight off just by being yourself. That’s why I’m glad I’m not a Pollyannish, sunshiny, cheerleader type now that I’m supposedly recovered from cancer. If that were the case, cancer would’ve won. People would say, where in the world is Katy Jacob? Right here, son. Now shut up and stop asking me questions!

Day 318: Walking in the Shadow of Men

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Walter Payton.

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

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

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

Day 218: It's All Over but the Shoutin'

This day has finally come, and it feels so anti-climatic in a way. For months when someone asked Gabe how he was doing, he would say, ask me in mid-December, or ask me in January. And now here we are, December 10. Shouldn’t there be fireworks? When you see me walking down the street, shouldn’t I have that glow like pregnant women do? Shouldn’t I get something, some kind of a prize? I guess not, since there’s no guarantee I won’t be doing all of this again at some point. And all of this was a hell of a lot, and I realize now I was so anxious to get it done that I didn’t give myself any breaks. I found something strange in my breast and went to the doctor the next morning. He told me he was 99% sure it was nothing but gave me an ultrasound order just in case, and told me I could wait to have it done. Six days later I went in for the ultrasound that ultimately turned into a core biopsy and a cancer diagnosis the next day. A month after diagnosis—the earliest date possible—I had surgery; 19 days later I had surgery again; 2 weeks after that I started chemo and 8 days after chemo ended I started radiation. No rest for the weary, right? I wouldn't change a thing though, as I ended just in time--it's been cold and snowy here already, and we are set for single digit high temperatures next week after a big storm this weekend. I'm so glad I won't have to go out every morning to burn myself in that weather.

I actually did get something today—the ladies who did my radiation cheered for me and blew bubbles, as they always do when someone “graduates.” I really liked the people who did my radiation, and it’s a little strange that I won’t be seeing them every day anymore. It’s like some kind of Stockholm syndrome, but the captors were actually nice people. I had the same main tech for the first 28 treatments, and the assistant was one of three different women. This last week for the boost I was in a different, colder, more sterile room (the “dungeon,” they call it) with different techs. While they were still very nice, it wasn’t the same as the women who complimented me almost every single day on my clothes or my shoes and told me stories about their kids every day for six weeks. As if I was a normal person, a woman, not a cancer patient. My main tech gave me a big hug as I left. It must be a strange job.

It’s just so hard to believe that I’m done with cancer treatment. No drugs, nothing left for me to do but wait and get mammograms all the time and wonder if every strange pain is stage IV cancer. Bubbles or no, no matter what anyone says, life doesn’t change all that much. I will still make dinner and do laundry tonight, and there will be no huge life or career changes, no trip around the world, no new love affair, not even a drumroll. But wait, what did I write a minute ago…I’m done with cancer treatment! You hear that? Done! Take that!

Maybe instead of fireworks I could be my nerdy self and do some math, take stock of the situation. I can do that in conjunction with using my least-favorite cancer metaphor of the “war” or “fight” on cancer. Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

1 core needle biopsy
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

Who won? Well, it’s hard to say. Over the last seven months I have lost the following, to varying degrees of severity, duration and permanence.

My:
hair, mucous, sweat glands, ovarian function, fertility, menstrual cycles, sex drive, chunk of the left breast, 5 lymph nodes, a bunch of nerve endings, ability to eat, ability to sleep, nice peach color on the left side of my chest, unmarked body (damn tattoos), use of one of the veins in my hand, ability to nurse my infant son, ability to have sex without lube, youth, potentially my identity-forming hair color (is it red? Is it brown? It had BETTER be red), a few of my friends and some of my self esteem.

I have kept a lot of things as well. I have always been able to think and remember, as I never had chemo brain. Therefore, I could write this blog. Radiation hasn’t affected me in any severe way and I believe the burns will be quite temporary. I maintained my complexion, skin color (except the parts that were radiated), original body weight and overall figure. I didn’t develop neuropathy. I never looked particularly un-healthy and my energy level has remained amazingly high, if I do say so myself. I had those times in the brutal months of chemo when I felt like I was sub-human, and yet I walked almost every day for an hour. I kept most of my friends and even found that people I didn’t know that well wanted to do something to help me.

I had a ton of support, but a lot of loneliness too. A lot of living inside this still-working brain.

I kept my sense of self, and my roles in life, for the most part, though everything seemed different. I worked full-time for 5 of the 7 months of my continuous treatment, though I did telecommute at times. Seriously, when I look at the list above, I wonder how I had time to do anything but cancer. How does anyone? And yet everyone does their normal things, for the most part. I was still mom, the no-nonsense one, the one who doesn’t take shit, but I was sick mom, bald mom, somewhat scary mom, at the same time. I was still married to someone who was crazy about me, but there was distance there at times, especially during chemo when he was terrified he would get me sick if he was too close to me, and I would die. When I wasn’t in the midst of the worst parts of chemo, I cooked and cleaned, and all along I hung out with people and made jokes and tried to walk around bald like it was no big thing. I kept my sense of laziness and lack of interest in what people thought right until the bitter end. I remained the pissed off somewhat cranky person who doesn’t like to be told what to do that I have always been. I was still a daughter, sister, friend, neighbor, still a stranger. I was still me, so it seems.

And yet …and yet. Things just changed. Some things will never be the same. I’ll have this fear of recurrence, and this responsibility, to check out everything that happens to me, for the rest of my life. I’ll have the knowledge that the “rest” might not be that long. But ultimately, I think if I could choose one thing that I wish I had never lost, it would either be my old sexuality or the ability to sleep. Isn’t that funny? Not the breast, or the hair, the eyebrows (those are coming back! Along with the lashes. I’m on my way to looking halfway normal someday). Those things seem less important. You can say it’s frivolous, but I wish sex was as easy and awesome for me as it always was, because now I know what it is like for many women, and now I know how special it was, that thing that I had, and it was mine damnit, not Gabe’s or anyone else’s, and while I haven’t entirely lost it and I still function normally under the general definition, I still wish I had it back. I also have not had a decent night’s sleep since April, for various reasons. I still have hot flashes all the time (I had one during radiation this morning), and the other night I had five an hour again, and was so desperate for them to stop that I lay in bed crying. It’s possible that menopause will reverse for me and these things will come back, especially the sexuality part, but the sleep probably never will. Just as no mother ever sleeps so lightly again after her children are born, just as I have never slept soundly since breaking my hips meant lying on my side for more than a few hours would be painful, cancer makes your mind race in ways that makes sleeping soundly a challenge.

There have been things that happened that were too painful to write about in the blog at the time that they happened, though now I see them more as chronicles of what chemo does to a person than something personal that happened to me. Two things come to mind:

The first time we had sex after chemo, at my insistence since I wanted us to be normal, I vomited afterwards. It was just too much for my body to handle. I still had a high sex drive then, and the experience itself was normal too. I just felt so sick afterwards, I could barely stand. Now, I know how it touched people to read about Gabe shaving my head. At that point, we had already had some memorable times of warped emotional intimacy, as evidenced by him standing naked in the bathroom talking to me while I puked after we made love. Talk about fucked up.

Another time, I took off what I thought was a piece of food from one of my teeth while I was brushing. It was actually a big piece of my gum. I had to go to an emergency dentist visit for that one. It turned out to be fine, and the gum eventually regenerated, but I was so disgusted, I almost quit chemo right then. At those two moments, I really did feel at war with myself, that my body was rejecting itself, and that is a feeling that is almost impossible to explain to someone who hasn’t been there. I had been there before—why can’t I walk? Why did they have to call in counselors to explain to other kids about me writhing around in convulsions on the floor?—but when I was younger and I didn’t yet know that it was possible for your mind to just not accept what was happening to you.

I have accepted all this, as everyone does. Look, it’s not about strength or moxie or bravery or resilience or anything else. You aren’t given a choice so you do what you have to do—just about everyone in this situation does. But as an adult, you have this nagging sense in your mind that doesn’t accept things. When I was a kid, I just took everything in stride. I didn’t know enough of the world to know different. I looked at today, and that was it. It’s hard to do that when you’re grown, especially when so much of your sense of your own future is wrapped up in your children’s future. What do I need to do to remain as highly functional as possible? To be a good role model of a responsible parent for both my kids, to show my daughter, and hell my son too, what it REALLY means to be a woman, in spite of what society says? To take away from Gabe the difficulty of thinking about how a motherless family would look, and go through what I need to go through to make sure the kids would have what they needed if I wasn’t around? How can I be realistic without being morbid? How can I give others permission to not behave the way everyone thinks you should behave when some bullshit happens?

I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit.

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.

Thanks for reading.

Day 185: Bloggers Block

So I think I've either hit the point in my treatment where I don't want to think or write about it anymore or I am just too damn tired to sit down and write. On the off chance that it's the second thing, I am going to make myself do it at least once a week. Since I'm not working, and I spend a lot of time by myself, or talking to small kids, this is a good outlet to remind myself that I have a brain, and one that doesn't seem to have been marred by chemo, at least that I can tell.

Now my body--that's another story. Actually I think if I wasn't in this extreme menopause my recovery from chemo would be pretty remarkable, considering all the crap that happened and all the weird side effects I had. I feel almost like myself, except with a thousand hot flashes and no period since September 1. That's the crazy thing about this menopause. I had a normal period, regular cycle, and then BAM--less than two weeks later I was in full-blown menopause. What crap. Sometimes my arms fall asleep at night, and I wonder if that's some odd kind of neuroapthy, but it doesn't happen during the day so it doesn't affect my ability to do normal things. I also think that it's possible that that always happens, because I sleep on my sides, but I just wouldn't know because the rest of me is asleep too. But I wake up a few times an hour if I do fall asleep, so I feel these things.

Otherwise, it's all good, I guess. I have a little cold right now but other than that, I feel more like my old self, and I'm not quite three weeks out of chemo. My nails are fine, my memory's intact, I have no neuropathy that I can tell, and my weight is the same or a pound or two less than when I started. Many things that I worried about didn't happen, at least not long term things. Other side effects are harder to see--like the heart issue. The non-chemo issues are there too--I could still have lymphedema at any time. And of course, my cancer could come back. Talk about the elephant in the room. It's so much easier to focus on the little things, or the side effects, than on the Big C itself. It's so much easier to focus on something like hair, for example. So why not talk about that a bit?

My hair is starting to come in for real now, as you can see in these pictures. It still looks weird to me, and hell if I can tell if it's red, but I don't think I have any other genetic option except white. It looks and feels like a newborn's hair, or like a baby chick, as someone said today. Gabe is obsessed with it, and people seem to like to touch it. Virgin hair on a 35 year old mother of two--a novelty. For me, I would rather just be bald or have normal hair. I'm a little done with being a novelty, I've done that enough in the last 25 years. On the one hand, I care about being cancer girl. I don't like being seen that way. On the other, I don't care enough to change the way I'm doing things. Wearing a wig just seems so alien to me I don't know what I was thinking when I bought them. So when I'm out and about and people stare at me, it bugs me, but only for a second, and then I realize how much more it would bug to wear a wig and I just shrug it off. Someone told me this week that it took a lot of self-confidence to go around bald like I do. I said no, not at all. Just a lot of laziness. Too lazy to wear a wig, too lazy to care what people think. Every time people see some kind of strength in this cancer fight, I feel like they're just uncovering a character flaw masquerading as something else.

For example, I went to work for a day this week, and I wore a wig, since I didn't want to explain to people at this meeting what was going on. I only see these people twice a year so it didn't seem worth it. But boy did a few people who weren't at the meeting, such as people who see me mostly at the gym, do double takes when they saw me. Like wait--didn't I just see you a month ago and you were bald? Did your hair grow that fast? That was kind of funny. I'm glad I went in--it made me realize that it is a damn good thing I'm not working right now. Four hot flashes during a two hour meeting, while wearing a wig and a suit. I thought I would pass out. This might not go away anytime soon and I realize that, but at least I have a few months to not worry about it. At home, I can just strip down to a camisole, or sometimes if it's really bad, to nothing. I can't exactly do that at work. OK, I suppose I could since I have an office, but it doesn't seem advisable.

I also realized that my work is interesting, and that someday I'll look back and say, you know that insanity that happened starting in 2008? I worked at the Fed then, and boy was that something else. I was too distracted to think that way in the latter half of chemo, but after being away for a while and feeling better, I can see it now. So I gained a new appreciation for what I do, but it was still very strange to see people at work. A few folks just found out and I had no idea they didn't know.

One guy told me my hair was pretty and then paused and said he hadn't seen me in a while and that he hoped everything was ok. I realized he was trying to graciously ask what was up, that he knew that wasn't my hair. I was impressed that a guy would notice such a subtle thing, and I thought for a second about how to explain my situation in a way that would match his graciousness. But instead, I answered Katy-style. Thanks, but it's not my hair. I guess you might not know, but I'm doing treatment for breast cancer.

Was that the right way to handle it? I have no clue. Hiding it just seems like too much work. There was something in Parade this morning about a young couple getting married, and the guy has a rare and aggressive form of cancer and not long to live. When they met, it was at a bar and she asked him why he wasn't drinking (why do people do that? do you ask people at a steakhouse why they're eating fish? who cares?) and he said "I have cancer so I can't." Boo-yah, right? Nope, she didn't care, and chatted him up anyway.

That's something I haven't experienced. I can't imagine being able to meet new people now, except for those who have dealt with breast cancer or another form of cancer. People just seem too uncomfortable with the whole thing. I can't imagine dating while dealing with this, which is something that a lot of women my age would be doing. I'm still surprised that my husband is attracted to me and wants to go out on public dates with me, and he's kind of required to by contract, right? And I'm not just talking about being bald, or having scarred and marked up breasts, or having tattoos (can you see it in the picture? right above the V in my shirt. a blue dot. I have three of them. I asked them--why blue? Couldn't you get brown or black or something that could actually look normal on a human being? I look down at this and in less lucid moments I think...melanoma--look at those fuzzy edges and what's that weird color! give a girl with cancer a break.)

It's having cancer itself that makes it hard for people to relate to you, even if you look normal. You could be completely capable of having normal conversations and some people just would not know what to say to you. Then go a step further and think about someone wanting to sleep with you, fall in love with you, marry you? Now, I feel like a normal person, so those seem like logical things to me, but I know many people just couldn't go there. I remember when I was doing blind dating (some people might not know that's how Gabe and I met...a Salon.com success story!) and I went out with a guy who described himself perfectly accurately, less the crutches he had due to spinal meningitis he had as an infant that left him in a wheelchair most of the time. He had picked the ground floor bar we went to because he could walk into it. I asked him why he didn't tell me beforehand, and he said, because you never would have gone out with me. I said, sure I would have, and I would have found you less annoying because I would have understood why you were rejecting every one of my suggestions of a place to go to eat. He didn't believe me. At some point in the date it came out that I had been in a wheelchair for a while, and he said, oh, well, it's different for you then. Other people wouldn't go out with me if they knew. And I'm sure he was right. We never went out again, and I'm happy to say it was because there was just no spark there. I said to him, don't people realize ANYONE could be in your situation? It's easier to end up disabled than just about anything. As I found out--you walk outside and BAM. It has nothing to do with you, your karma, your health, your social class, your habits, nothing. But I also see that many people just have trouble relating to something that seems so scary, perhaps in part BECAUSE it could happen to them.

I mean, I have trouble relating to myself in that regard. Now that I'm done with chemo and my physical self feels a little more normal, I have these haunting thoughts all the time. And those thoughts can be summed up with one word, or one question to be more accurate: Really?

Is this really happening? Did I really just go through all this stuff over the last six months? Me? I feel so relatively healthy, and in shape. I went to pilates last week and I'm going to do some personal training tomorrow with a friend. I walk an hour a day, do weights at home, cook, do laundry, pick up babies (I included the one with me and Augie because the kid already looks bigger than me--his head anyway--and he's not even two), talk to people about non-cancer things. How is it possible that I have cancer, or as Gabe says, that I HAD cancer? There's another secret reason for this blog. This blog makes it true, makes it impossible to forget.

I'm still not ready to put my cancer in the past tense, as Gabe is, at least not while I'm burning the hell out of myself. It might sound odd, but it's almost harder to think of the cancer as gone right now. Because then it would be next to impossible to make myself do chemo and radiation. While radiation has not yet caused any side effects for me after the 9 treatments I've done--no skin changes yet, no fatigue--it is a pain in the ass, and it is a crazy amount of poison if you think about it too much. I have to be doing this shit for some kind of reason.

But still, I think with amazement--how could I have been that close to death? What if I hadn't found the lump, and a few months went by, and it spread? How is it possible that I could have died, that I still could? Even when I look in the mirror, or at these pictures, and I see a baldish woman with no left eyebrow, who is exhausted from lack of sleep or sometimes bright red and sweaty from hot flashes, I still find it surreal. That's still me, and I don't look like a dying person, or someone with a chronic illness. I look like me, bald.

It's not that I'm in denial or that I don't believe it, it's just that it seems so damn absurd on the one hand, so strangely commonplace on the other. That's the thing I've never admitted to in the blog. Cancer is terrifying and horrible. But for me, there's a small piece of me that feels like, ok, here's another thing to do, another thing that went wrong with my body that I need to handle. Here we go again. It scares me to feel that way, because this is much more serious than other things I've dealt with, and I worry that I don't take it seriously enough.

And then I realize that I have, and I do. We watched Toy Story 3 on netflix this weekend. Gabe had never seen it, and he sobbed through it, as I expected. It brought me back to seeing it with Lenny just two weeks or so past diagnosis. Crying when Andy leaves for college? Normal, even if I don't often cry. Crying when they have that touching scene of him playing with his toys for the last time? Normal. But you know the scary scene when they're all about to be incinerated before the aliens save them? I bawled at that in the theater. All these toys holding hands, waiting to die, looking at the fiery death that awaited them, trying to get a little comfort at the end. That's how I felt back then, sitting in a theater with my 4 year old daughter, wondering if I would see her turn five. I'm not in that dark place now, but it's still with me. I'm still a little bit darker, heavier in thought than I've ever been.

I had a dream about vampires last night. Half the world had turned into vampires and the other half was fighting them. I was fighting, but I was by myself, and Gabe was with the kids so I didn't know if they were ok or not. One of the strangers in my dream told me I needed to save myself first, because the place they were in was safer and I could get to them later. So I killed some bad guys.

You can see why I don't need a dream interpreter. It's either something like that, with the message slapping me in the face, or it's a dream of me eating product 19 for breakfast, and there's no message at all. Or there's no dream, because there's no sleep. But you get what I'm saying. It's hard when it seems easy, because cancer could just take me, and I might not have a clue. Some people don't live as long as I have since my cancer diagnosis. Some don't live six months and I'm trying for 60 years. It might be too much to ask, so how about enough to just get my kids to that safe place, when they can take care of themselves? Or at least long enough for Augie to stop calling his pacifier his mama? Again, give a girl with cancer a break.

Day 156: Starting the New Normal

For the last few days, I've felt almost normal. I even forgot to take my beta blocker yesterday, to no apparent ill effect. I've been taking allergy medicine for the reaction I was having to taxol, including this mysterious rash on my ankles and feet that I was at first convinced was bedbugs. (I thought maybe bedbugs were like mosquitoes and they all just flocked to me, ignoring everyone else, including Gabe, but I'm told that's not the case.) Everything seems to have subsided. So while I'm tired, I am starting to understand what everyone is talking about when they mention the new normal.

Because it isn't like it used to be. We went out last night, and I saw Gabe sing karaoke for the first time in the 7.5 years we've been together. He was careful to pick very cheerful songs, including You make me feel so young. There was a guy at this place celebrating his birthday and he was singing Only the good die young. Gabe loves Billy Joel (not my favorite, I'll admit) so I said, that guy did it first! Gabe noted that it would be a party foul for him to sing that song.

Oh, right. True. We wouldn't have thought of that before all this started. I also ate a lot of pizza, way more than I've been able to eat for a long time, and I said something about eating too much, or worrying about gaining weight. Gabe said he wanted me to weigh 120 pounds again. Why, am I too skinny? Well, what did you weigh before May? Maybe around 119, 120. I guess that even though my weight loss is unrelated to cancer, below 120 is like my BC size. My size-2-ness must remind him that I'm different than I used to be, and "used to be" does not mean the things for us that it means for other couples. You know, some people say, how we used to be, and they mean, when we were dating, before we had kids, when we first met, when we lived in separate apartments, before we slept together, when we were young. For us, it means, before I had cancer, before my body became an enemy on top of all the other things that my body used to be.

Everything is a reminder, even when it seems like everything should be the same. I'm still bald in all the pictures, though my head is fuzzy now with translucent hair, and I need to shave my legs again. My left eyebrow is pretty much toast, but I've learned to use the eyebrow shadow from the cancer shop. Sometimes I stop and wonder why my boob is hurting. Oh, right, those surgeries. The ones that took out the CANCER. I remember when it was just a time of the month problem, which of course I don't have now, having lost my time of the month to chemo.

Sometimes the nerve pain in my arm returns, usually while doing something like driving. (Talk about normal--I drove to Indiana and back today, and had energy and could see normally and everything! and I still hate Indiana drivers!). And I do things like pick up both my kids, carry a bunch of apples or a pumpkin, push a stroller filled with groceries and babies, and I remember: I'm not supposed to do these things.

They used to tell women who had breast cancer that they could never lift more than 15 pounds for the rest of their lives. Even today, I have been told by some doctors to not even lift my purse on the left side. I am supposed to wear gloves to wash dishes, always put sunscreen on the left arm, favor it when exercising. All to avoid lymphedema, a swelling of the arm that could happen at any time when your lymph nodes are removed.

I hear these things and I just think, yeah right. 15 pounds? My son weighs 25. I'm right handed, so of course I pick him up on the left side. I walked Lenny to school yesterday and she fell, skinning her knee, so I had to pick her up and carry her the last block. She weighs 29 pounds. There are lots of dishes in this house. It's October, and the sunscreen has been put away except for the stuff I put on my face and my head. I'm supposed to lift weights and exercise in order to help stop the chance of a recurrence. But what, only on the right side? Just to look extra lopsided, or what?

I do these things anyway, with some measure of caution, since if I am going to live a while, which is fairly possible I suppose, I have to actually live. I've learned that lesson before--reminders are just that. If your liver is enlarged, you remember not to drink a lot. If bright lights hurt your eyes, you remember not to look into them to avoid having seizures. You don't know how to play video games, you don't dance at places with strobes. When it rains, your hips hurt. Your kids come out early because your body knows better than to try to deliver them at term.

So it is with this. People in crowds look at me and I remember I'm bald. That one's on me, I know. I wore my hair and a a hat to an event at Lenny's school the other day. We met a couple there; they have a daughter in Lenny's school and another one at Augie's daycare. I saw the dad the next day at Lenny's school and he didn't recognize me. I said hello, he looked at me strangely and I realized I just had a scarf on my head. Today, we made it apple picking, though we were too late in the season to pick our own apples. At one point an older man came up to me and asked how I was doing. When I said I was fine, I knew what was coming. Are you a survivor? Yes, I am. He started telling me that his wife just lost her hair for the second time, right after she was able to make her first appointment with the hairdresser. He said her lung cancer had metastisized to her brain and she had six tumors. She never complained, they never talked about it much at all. I said well, I sure have complained about chemo. He laughed--I guess it's no fun for her either; she sits in bed a lot eating cheetos because that's all she can tolerate.

There's one picture of cancer. A woman sitting silently in bed eating junk so she won't vomit, not talking to her husband, who clearly needs to talk to someone or he wouldn't be randomly accosting bald women in the apple orchard. And he said she was so disappointed--about her hair, she was so happy to have it back. I thought, she just couldn't tell you that it wasn't disappointment, it was terror, and it wasn't about her hair, it was about those brain tumors. I wanted to say, this is the last thing I need to hear right now, but I knew he needed to tell me, just like the owner of our favorite restaurant told us a long story last weekend about how he understood what I was going through because he had a scare with stomach cancer.

But a scare is not cancer, and your hair is not your brain, and looking and feeling somewhat normal is not the same as how it was back on May 3, back when I was a different Katy that people could relate to more easily. And maybe that's what I need to do--be more like that Katy, less focused on what's happening in this body of mine. Maybe, but maybe not. Perhaps being stoic saves some of those around you from the pain, but it doesn't seem that it helps those who are the very closest to you at all. Because then they need to be stoic too. And I am not married to a stoic man, and my kids aren't stoic either. I'm sure there are a lot of people who would rather not know the things they learn here in this blog, or who would rather see me with a wig on, or who are more likely to want to talk to me in January. In the meantime I think about these reminders, and I feel like I'm almost on the other end of cancer treatment, the part where I try and go about my business, my non-cancer business.

For now, I'm all cancer, all the time. At least in theory. I'm not working anymore. I've started the three week leave I need to take to qualify for short term disability. Once that's over, I might go back to work sporadically, or I might not go back at all until I'm done with radiation. I just don't know--I'm tired. I worked a mostly normal schedule for five months after diagnosis, while trying and often failing to take care of two little kids. For some women, work is a distraction from cancer. For me, I have two little distractions at home, and work--while it helped to feel productive, get out of the house, and take the train and interact with other adults--took me away from them quite a bit. Once my WBCs tanked and then I was in the hospital for my heart, I thought, what the hell am I doing? I need to be home and just get through this. Get it over with, plan some holidays, do some yard work, go to acupuncture without risking my life in cabs every time.

Ah, acupuncture, how I love thee. It hasn't helped much with these hot flashes, but I'll give it some time. And I've had a few massages as well, since taxol does such a horrible number on your bones and joints. The first time I went it was a strange experience. I've had many massages before, and I've had them from this same masseuse several times. This time I was so floored by the feeling of her hands on my back, my toes, my bald head, my tailbone, legs, my neck. I thought, this feels so good! Someone touching me in a healing type of way, without sadness, without fear, when for an hour my body could be a friend again, rather than an enemy. It's interesting how you are touched less with cancer. Fewer hugs from friends, more distance. I'm not the most affectionate person anyway, but again, it's a reminder. And Gabe and I have been torn from each other in some ways--sleeping apart, him taking care of me, me staying somewhere else when people are sick. I told him once that I thought he was much less affectionate since I got cancer (I never say since I've been sick--I don't feel sick. I feel like a person with cancer), or more specifically since I started chemo. It's because I'm bald, right? Because I'm unattractive now. He has convinced me to some extent that this isn't true, that he likes how I look bald and the rest of me looks the same (really? that slight dent in my breast, those scars?) but that he didn't want to bother me, to annoy me, or make me sick if he was sick.

I have never liked to be bothered. That's what's funny about the massages. I always hated back rubs. My mom and brother used to rub each others' backs and I would try it only to feel like I was crawling out of my skin. And boys, or men, would try to rub my back but as everyone knows, only for ulterior reasons and it always seemed to me like a waste of time when you could just get to the point. I like to spoon, until I am sleeping, then I want to be left alone. But I do love a massage, and even more so now, when I am alone so much more of the time. It's like prostitution in a way, isn't it? You don't have to give anything in return, nothing but money.

Maybe I won't be a new-ager after all, not with those types of comparisons. I'm laughing right now, thinking about the time when I went to chemo by myself, and there was a woman there who was sitting on the floor in the waiting room, bowed over like she was praying. Her husband was sitting on the couch with their bags, and a volunteer came over and asked if she was just meditating or if she needed medical assistance. She got up and said, I'm fine, I just don't believe in chairs.

I was hiding my face behind my People at that one, trying not to laugh. But then she was called back for her bloodwork and her husband came with her and I realized what was happening and I felt a pang in my heart instead. This was her first time. If it hadn't been, she wouldn't have brought him back for the blood draw. They came back a few minutes later and she sat on the floor again, head down. I felt for her, and wanted to say something about how it would be ok, but how would that sound coming from me, with all my chemo issues? She looked up at me and I was about to ask her if it was her first chemo (of course it was, she had a full head of hair), but then she looked down. I realize now I was like the guy in the orchard to her. A portent of bad things to come. Bald, by myself, reading trashy magazines, resigned to the routine. So I didn't say a thing. If it helps to believe in the floor, believe in it then. Do what you need to do.

The chemo nurse told me to bring my party shoes on October 18. I've been putting a lot of thought into that actually. There are deep cancer moments, moments of fear and faith and resignation. And there are those moments where I wonder if I should wear heels or cowboy boots, red or purple or brown, if my party shoes should be comfortable or impractical for that last chemo. After all, some people don't believe in chairs, I don't believe in ugly shoes. Until that day, and for many after that when I am doing radiation and everything else, I will continue my massages, and my acupuncture, and my allergy medications. I will keep up with my blog writing, pizza eating, laughing, bitching, lovemaking, sleeping, crying, hot flashing, and whatever else I'm still good at doing. And then, nine days from now, if all goes as planned, will be the last time I will need to go in that room and sit up straight in that chair in the waiting room and go through all the rest of it. I have to tell myself that, that it's almost over, that it won't come back. It goes through my head in a continuous loop. One more, one more, one more. Only one.