Friday, May 16, 2014

Day 1,432: Following Up and Following Through

This past week, I had the pleasure of having three follow-up appointments for my cancer recurrence. The first was the most dreaded--the annual mammogram of my right breast. I don't have a left breast anymore, so I'm off the hook on that side, so to speak, but I will still need to have yearly scans of my healthy breast for the rest of my life. I wasn't really concerned about having an abnormal mammogram, as I have never felt anything odd on the right at all. But the whole experience is nerve-wracking for me, as the very first mammogram I ever had was just to confirm my cancer, and I don't trust the damn things, as I had a clean one last May on both sides and then was diagnosed again just two months later after discovering the lump myself within weeks of that clean scan. I mean, hell. Even after they FOUND my tumor on ultrasound, and threaded a goddamn wire INSIDE OF IT, they could not locate it with a mammogram. So I get anxious. I yell at people in my house for a few days. I sit in the waiting area and my husband texts me knock knock jokes and I simultaneously want to kill him and love him for trying to help me through it.

This time, I was called back for an extra picture--they had only taken two. I was used to getting at least 8 or 10 on the cancer side, so this just seemed like nothing. But getting called back, after having cancer, is a surefire way to go on the verge of losing your shit. The technician just tried to casually tell me to take off the gown etc. and I glared at her. I asked "why did she call me back? What did they see?" I might have been standing there half-naked but hell if I was going to move if she didn't tell me SOMETHING. So she said the radiologist wasn't really worried, but I still have dense breast tissue so she just wanted one more to make sure she could see anything, given my history. And within about 90 seconds of walking out of that room, I received my results. That's one thing--they don't make you wait for results if you've had cancer. They know you might trash the joint if you have to wait. The technician told me I looked great and handed me that piece of paper. For the first time ever, I read the following words:

"Your mammogram shows no abnormalities."

Once you've had breast cancer, the cancer side will never, ever show up with "no abnormalities." You might get "findings that appear benign," but you will not get NORMAL. Many women who have NOT had cancer never get that.

So, my right breast just continues to be its helpful, cooperative, perky, nippled self. I'll go on the record saying that I'm glad I didn't cut it off--there was no reason, genetic or otherwise, to do that.

After the relief of that visit, I went to my oncologist. I had graduated to yearly visits to him as well last year, but then I had a recurrence, and I am back to every 3-4 months for the next several years. He's just so affable with me now, when he had been so...otherwise the first time around. It's like we're buddies who play poker together. He did the breast exam, felt my arms, listened to my heart and lungs, felt my abdomen and throat, looked into my eyes. It's like a normal physical except I know what I know: He is looking for another local recurrence, signs of lymphedema, heart trouble from adriamicin, breathing problems from lung mets, possible liver or brain mets.

You know, casual.

Having found nothing, having marveled at the continuation of my completely normal menstrual cycles even after all the D&C bullshit, we were basically done. No blood tests, no scans, nothing. I learned long ago after screaming at him and forcing him to just TELL ME WHY, that I would never get blood tests or scans unless I showed symptoms because it wouldn't do a damn bit of good and no test could predict mets, only diagnose it once it had already happened. And the unspoken follow-up to that statement is that once mets is there, it will always be there.

So we were done. And I told him about how distracted I've been feeling, and that I might want to talk to someone. He said that was reasonable and there was no reason not to do it, but that I could also give myself a break. I said I got paranoid about not taking carbo and he insisted I should not feel that way, that I made a good decision, that the old chemos like the one I did come back into the forefront. I asked if I should take vitamins, and he said I should--if I like taking vitamins. I asked what now--what do I do? He shrugged. He told me to exercise and try to eat well. I said that I've been having a drink whenever I want to have one, in part to calm down, and he said "well then that's why you can't lose the last 8 pounds!" (I had complained about the chemo weight that I can't seem to lose). I sheepishly said yeah, I know. And he responded:

"Now you realize I didn't say you shouldn't do it. (laughing) Life is important. Do what you want to do. It's a tradeoff. Maybe the weight is worth it--you look fine, you look great. You deserve it."

But doc if I drink, I mean...

"You are not going to rock the boat. That's not what's going on here. Enjoy your summer."

And then I went and bought my first new car. And by that I mean MY FIRST NEW CAR. I got my driver's license on my 16th birthday at the tail end of the summer of 1991, and I have never, ever had a new car. I never have cared about cars or seen them as the playthings they are for other people. I guess that's because I almost got killed by one when I was nine. The sex appeal has just never been there. On the other hand, I did harbor some love for the car I learned to drive on, the ancient Delta 88 Olds my mother had bought a few years before with the electric seats that was laughably huge for my 95 pound self to be driving. I called it The Ogre. I loved that car for enabling me to be alone. I remember so clearly how anxious I got toward the end of high school when things were so bad at home and in general and I would get in that car and drive somewhere and just sit there, smoking a cigarette I had stolen from some adult because hell if I ever bothered to get a fake ID. And eventually I would feel that calm. And I would laugh at myself--that kid who didn't even inhale or drive fast.

After that car, I never cared about another one. My grandfather gave me his old Dodge Neon when he was told he could no longer drive at age 90; I was 25 and had relied on public transit, friends, boyfriends, etc., for years. We bought our minivan when Lenny was one and we were in the middle of renovating the kitchen in our old house to the tune of $25k, but I heard of this local family who had had their SIXTH CHILD WHO NEEDED A CAR SEAT and so a minivan was no longer good enough and they needed one of those kidnapper vans, and we got the damn thing for $9k which might have been the best deal in the history of used cars. I mean hell, that was 7 years ago and the thing shows no sign of failing anytime soon. When Gabe was a young man with a paycheck and high expectations of his future, he bought a car. At the same age and stage in life, I bought...a condo. I made tens of thousands of dollars on that condo without lifting a finger in just three years, and his piece of shit car is still sitting idly in our garage. But we do have the memories--when we were dating, he used to carry me to the car. Just pick me up and carry me, for blocks sometimes, and I never really knew why. We had our first kiss in that car on our first date. We drove that car home from our wedding. We brought Lenny home from the hospital in it.

But it is still a piece of shit, albeit one that at least represented Gabe having a clue how to buy a new car. The whole idea has just stressed me out, like everything else has stressed me out if it involved making a decision recently. But I walked out of the oncologist's office and said, screw it. We're walking to the dealership. We didn't even have a checkbook on us. Hours later, I drove that car across the city in the rain to my house. And I felt calm, and I realized I could still make decisions and do things, and I realized that maybe some of my recent mental paralysis might have been due to my follow-up appointments, my 4 year cancerversary, the reminder of the clean mammogram that meant nothing last May, the upcoming anniversary of cutting off my breast and starting chemo again.

I mean, really, who could blame me?

So yesterday I had my follow-up with my surgeon, who is an extremely personable, kind younger woman who talks to me about our kids and had to break the news that she was moving to Michigan, which I knew already, since my oncologist had told me. She said a bunch of surprising things to me. She told me I had a great year, that I looked amazing, that everything was good, that I was done. She looked at my reconstructed breast and asked if I was happy with it. I said, well, considering what I wanted was to look normal in clothes...oh wait, no, I didn't want it at all. I mean since I didn't have to do more surgeries, and it's doing its job in that I can wear all my normal clothes and bras and swimsuits, yeah, it's good.

She was so pleased. She told me that the plastic surgeon had just done a one step reconstruction on another patient when I came along, and most surgeons aren't willing to do them but she knew I was the right candidate. And why not? Why worry about one more thing, about your clothes fitting, about a prosthesis? You did the surgery, bam, you were done. We talked about the necrotic flesh that cropped up right after the mastectomy that had to be scooped out and she was on vacation at the time and didn't even know it had happened. She told me she was freaking out, panicking when she learned, and there I was, matter of factly laughing about it. She said, I mean, you put a bikini on two weeks after your mastectomy. That was amazing. I will never, ever forget that.

We got into conversations about plastics, about how people confuse surgery that is medical with surgery that is cosmetic. She told me that if I couldn't lose the chemo weight, that was my body's way of telling me I was too skinny before, and I should just go with it. She sounded genuinely shocked when I said I thought I might need to see a therapist--but you are so GROUNDED, she said. You handled yourself so beautifully, you took care of everything right away, you just powered through it. You made great decisions, you asked great questions, you seemed less surprised than the rest of us.

All of that is true. I told her, well, cancer wasn't my first trial. Hell, this cancer wasn't even my first CANCER. There was nothing to do but get it done.

She began to tell me a story of a woman who was completely losing it that day upon learning of her 5 cm tumor. She was hysterical, she wouldn't leave the office, her husband wouldn't look at her or speak to her. They have small children and she hoped this woman would GET IT TOGETHER. I said, well, she won't have a choice. You just said her surgery is in two weeks. It will be real enough then. Let her rave a bit.

She didn't understand it. I don't either, but I am not that woman. I am this woman. My methods and reactions are not necessarily better, but I honestly couldn't be different if I tried. I envy those who can rave and cry and get lost in grief. I sometimes curse my own calm and rational demeanor. It seems absurd given the circumstances.

And then I told her that I worry about my chemo choice and she told me something I never knew. They had considered me for a trial, without telling me, that involved 5 chemo agents. They had like a day to decide if they should mention it to me and they decided not to, as I wasn't keen on big amounts of chemo. Her friend, a woman like me, with a 1 cm TN tumor with no node involvement, was put in the trial.

That woman is now dying. She has been given a year to live.

Of course, she is not dying because of the trial. She is dying because her cancer is that aggressive. I think this was supposed to make me feel better, to make me realize that there is no miracle, that I made a good decision. I was supposed to feel better because, my surgeon said, I was DONE. My cancer was not like that woman's cancer, for whatever reason. It was almost a year later, and I could be considered cured.

Cured. She said that.

She said that if it were going to come back, she thought it would have by now.

I just smiled.

How many women with TNBC do I know who thought the same thing, only to develop mets three years down the line? Too many, I tell you. Way too many. I am not in denial. I do not think that because others have survived for years that I would necessarily be one of those women. I know I could be, but I know I could not be, just as easily. On the other hand, my cancer decided to beat the hell out of my left breast with four different tumors and then for some reason has for four years left the rest of my body the hell alone. Who knows why.

Who knows.

What I do know is that the fog is lifting for me a little around here. I can imagine making other decisions, reading great books again, maybe even making plans. I can imagine living a long life. Even if it doesn't come to pass, I can imagine it. I can see myself the way others see me, as the one who did things they had never seen before, who gave voice to things they were afraid to bring up, who just kept taking the hits because having wounds that heal is better than being knocked out cold.

I can see myself reflected in that surgeon's eyes when she came back in the room one more time when she didn't have to, shook my hand, said to give her regards to my husband, to have fun with my kids, when she complimented my shoes, told me I could call her if I ever really needed to, even in Michigan, when she gave me the kind of goodbye you can only give to someone who either doesn't have much time left or has way more time than she could imagine:

"Take care. And just do it. Do everything. Do whatever you want."


  1. You are a brave rockstar. Keep on writing and dreaming - enjoy that new car!

  2. Just coming back to your blog. My stage III breast cancer was also missed repeatedly on mammograms. Please check out my blog

  3. Sorry, my iPad froze

  4. Great news to hear! Thanks for continuing to be an inspiration to all of us out here.