Day 1,049: Iron Woman

I think I held up pretty well this week, considering. My three year cancerversary came and went, and I didn't feel much like celebrating, since I still had to get through today--the first time that I had been allowed to go a year between mammograms since the whole mess started. I also had visits with the surgeon and oncologist, so both Gabe and I took the day off of work and my mom agreed to pick the kids up from school. I have been distracted, and last night I snapped at Gabe and felt jumpy and made myself what will now be my go-to drink the night before such procedures:

A "Suffering Bastard."

I mean, if you're going to be in the drink-naming business, THAT'S what I'm talking about--none of this juvenile sex on the beach crap. Alcohol was invented for a reason, and that reason was to drown some sorrows and maybe help you sleep when sleep seems impossible.

But I didn't do anything wildly self-destructive or insane, and I did eventually fall asleep, and then I woke up, and then...

The only detail of the day before the procedure began that will stick with me was this: my undeniable nervousness in the car on the way to the hospital. It's a damn good thing Gabe drives to these appointments. I am always so distracted, heart beating fast, trying to find something to concentrate on in the distance or on my phone, secretly glad that traffic is slow, as the inevitable is thankfully prolonged.

The same nervousness--so hard to explain, even to those who also get nervous at mammograms. I get it. But you know, the very first one I ever had was under very dire circumstances, and the news from it, well...So, waiting, and so so nervous, hating the jackass who left nothing but goddamn YACHTING magazines in the breast cancer ward. Seriously, there's a special place in hell for him. Then, the smiling tech comes over and starts the small talk and asks how I'm doing and I say:

"This isn't my favorite place to spend the day."

She asks what I hate most about it? Is there anything she can do to make the experience better for me?

"Well, I doubt it. Because, you know, I had breast cancer. So I'm never going to like this. Plus my breasts aren't big and the left side still hurts all the time so I know what's coming."

She's sympathetic. And brutal. Mammograms are so dehumanizing in the way they make you contort yourself and the way they treat such a sensitive part of your body as if it is jello for the mold:

I'm sorry but I'm going to really have to grab a lot of tissue here. This won't feel good.

Right.

Ugh, I wince in pain where my surgery site feels like it's on fire. I go back to wait for results. Nervous. Nervous. Phone quickly losing juice. Texting Gabe to let him know I'm done but waiting for the radiologist.

"Ms. Jacob, you need to come back for a few more pictures on the left side."

Heart caught in my throat. Woman, don't you know what happened the last time someone said that to me?

More contortion, more pain, more apologies and small talk and more of me not caring until they can tell me what they found.

Back to waiting. Gabe texting me all the things it could be that they're looking for: calcification, scar tissue, me thinking yeah that and CANCER.

The radiologist calls me in, and again my heart catches in my throat.

It's the woman who diagnosed me with breast cancer. The woman who performed my second ultrasound herself after she saw the telltale circles at 3:00 on my breast on May 3, 2010. The one who performed the initial mammograms, gave me a piece of paper that said there was concern that my mammogram showed a possibility of breast cancer, and offered to do the 7 core needle biopsies herself, on her lunch hour, right then and there. The one who called me to give me the news, whose naturally cracking voice broke on the phone when she told me to find my husband so he could take notes.

She looked at me and said: "There are a few spots that are probably calcifications that we'd like to watch in 6 months."

Um, ok, I said, what does that mean? Should I worry?

"I wouldn't worry. You have had a few spots and now they are forming a circle, right near the lumpectomy site. It's fairly common. We will watch it to make sure it's not something else."

FORMING A GODDAMN MOTHERFUCKING CIRCLE?

is what I thought. Circles inside the body are BAD. I just looked at her, asked some more questions, she answered in the noncommittal way that says we think you're fine but we're not going to say that because we don't want to get sued if the shit hits the fan, and I went back to get dressed.

The radiation tech came with me. She grabbed my arm and told me that if Dr. W. thought something was wrong, if she thought it could go "the other way," I would be lying on the biopsy table right now. She gave me a long explanation for why this is a common occurrence after breast surgery. She kept talking about how good and thorough the doctor was.

"I know that," I said. "She's the one who put me on the biopsy table in the first place."

I felt...well, kind of relieved, but not as relieved as I would have liked to feel. I wanted to have another year, not six months. The surgeon saw me, thought I looked amazing, the oncologist said the same thing: "everything seems fine. you look great. have a good summer." Neither of them took much stock in my chest pains or breathlessness issues. They seem to think I'm OK, that I'm actually NED, that I've made it to the three year point. I feel happy, yet ambivalent, a sense of relief and a sense of trepidation, suspicious and grateful.

What a strange cancer trip this is.

After the last doctor's appointment, Gabe and I went for an early lunch, then he good-naturedly hung around while I went shopping for a bit, then we walked along the lake, and then we went to a movie. If the first half of the day hadn't been spent in the cancer ward and if we hadn't needed a sitter for our kids, this long day would have been like one of those dates we had back when we first met, when we had nothing but time for each other.

We drove to our favorite theater to see Iron Man 3. The irony was not lost on either of us. The last time we went to see Iron Man in a theater, I had been diagnosed with breast cancer just days earlier. I remember the scene where Tony Stark talks about the poison in his body that was keeping him alive, and I remember thinking how surreal my life had become, that I could relate to a fictional superhero better than I could relate to regular people in my life, like my friends, my neighbors, my kids, my...everyone.



This time, we were much more relaxed, obviously. We put the arm rest up in between us and I swung my legs over Gabe's and yeah we are still dorks like that. We enjoyed the film, even when it got ridiculous. Near the end, Tony was talking about being a changed man. He lamented how hard it was to live with shrapnel in his chest. The monologue continued, and I looked over at my husband, not for any reason, just because that's what couples do periodically when they're watching a film.

He had taken his glasses off, and he was silently crying.

I looked away, looked back at him, and asked him what was wrong. He said, "you know what."

How hard it is to live with all this shrapnel in my chest.

I looked at Gabe. He said, "You don't have it anymore." He cried a little more and then he stopped.

I sighed and rolled my eyes and patted his thigh because that's what I do when he cries, since I'm not good with crying. He smiled at me, as if he knew what I was thinking, but he didn't. I wasn't thinking about Iron Man, or cancer cells or the metal that is, in fact, still in my chest in the form of staples in my tumor sites. I was thinking about this:

The doctor who diagnosed my cancer, the one who gave me the worst news that I have ever received in my life up until this point, handing me a piece of paper and telling me I am probably fine. She shook my hand, looked right in my eyes and said:

"It was nice to meet you."

I was thinking about how she didn't recognize me, she didn't remember me. I was thinking that is because she is busy and sees lots of people and her relevance in my life is a thousand times greater than my relevance in hers. But as my husband dried his eyes and took my hand to lead me out of the dark movie theater, as he put my purse on his shoulder as if we had been married 50 years, I was thinking this:

Of course she didn't recognize me. Back then, I was somebody else.

Day 735: KatyDid Cancer...For Real?

Wow, what a week.

What a couple of years, actually.

I have so much to say, and yet I don't know where to begin. So I guess I will begin with yesterday's news.

Most of you know that I had a clean mammogram, though saying "mammogram" in the singular is misleading. I had ten of them yesterday: six on the left and 4 on the right. I have never gone in for a mammogram and had fewer than 8 radioactive pictures taken. But regardless, the results were as close to "normal" as someone with a history of breast cancer is allowed to have. The innocuous sheet of paper that at one point warned me that I had breast cancer told me that findings "appeared to be benign." I have been so nervous, in a way that those who have not done follow-up scans post-cancer-treatment cannot understand. I have been someone else, someone stuck in a strange place where I wanted a time machine that could either stop time or speed it up, all depending on the results of that damn test. While I rubbed my sore chest after the procedure, I had the following text exchange with Gabe, waiting three rooms away:

K: finally done with images waiting to see if I need more and to talk to radiologist
G: OK. I love you! I hope you don't need more.
G: Did you get either of these jumble words? ISOTH or DOBRIF
(K thinking to self, fucking jumble words? ARE YOU INSANE? Then thinking to self: Hoist. And Fibroid. Oh wait, there's only one i. Wait a minute...forbid, that's it. Fibroid? Can you say TUMORS ON THE BRAIN? Meanwhile, mammo tech comes to get me and says, Ms. Jacob, follow me. Why, do I need more pictures, I ask in a panicked voice. She looks at me and realizes that she is about to needlessly induce panic by asking me to wait to get to a private room to get the results. No, you win the prize today, she said. You don't have to come back for a year. Sign here. What? I ask? It's normal? Yes, as normal as can be expected. oh, I said. GIVE ME THAT PEN!)
K: I'm fine! Don't have to come back for a year! Getting dressed!
G: Yay! Love you so much SOOOO relieved!

And then, I proceeded to wait another four hours until I actually got to leave the damn place. I had to wait for the surgeon next. Is there a possibility I can get in sooner? Yes, it's possible, they told me.

Well, really, isn't anything?

So when I finally saw the medical student who preceded the P.A. who preceded the actual surgeon I had been there for two and a half hours. This young kid hands me a survey. He tells me it's a research study they're doing on chronic pain, because they have started to realize that a significant portion of women, as high as 40%, have this problem.

REALLY? Who is going to pay ME to verify that fascinating revelation? Remember when I begged you all for A YEAR AND A HALF to get me some physical therapy because of issues with chronic pain and range of motion problems? Oh wait, you're like 22, so you have no memory of that. So this entire survey is one long annoying pain scale, the kind that people like me with high tolerances for pain should never fill out. The kid actually said "Yeah, most women who come in here have a high tolerance for pain." You think? Anyway, 1 is the least pain, 10 is the most. Can pain ever really be higher than 6? That's what I said in labor before any drugs when the digital meter almost broke from my continuous contractions. To make matters worse, this was a "subjective" pain scale, asking me about all kinds of different pain and whether I experienced them: stabbing. sharp. achy. shooting. throbbing. stinging.

And then it got interesting:

Gnawing? Fearful?

The guy looked at us a little fearfully, actually, as Gabe started playfully gnawing on my arm. Um, the student said...you haven't even gotten to the last one yet.

"Cruel or punishing?"

Get out. It doesn't say that. What the hell does that even MEAN? Oh, if only I didn't do research for a living, I would have a party with this survey. After choosing zero for cruel and punishing, I filled out the rest of the thing, which had all kinds of other questions about how I feel and have felt in the last 2 weeks. Do I have trouble sleeping? Yes, always. Do I want to hurt myself? Kill myself? Do I feel worthless? Um, wow. No. Have I been nervous? fidgety? Unable to concentrate? At that point I stopped circling numbers.

"You know what?" I asked the kid. "I just had a mammogram. My two year mammogram to see if I have breast cancer again. It is worthless to ask me if I've been nervous and unable to concentrate because I have been thinking about nothing else and pretty useless in other areas of my life. You all need to time these surveys better."

He looked so relieved to leave the room. I can't say I blame him. Then the P.A. came in, and I must admit I like this guy. He's pretty nonchalant. He's the one who actually gave me the physical therapy scrip, so I thanked him for that and told him how much it helped me. Then I was about to rip my gown off to offer the P.A. my boobs so he could do an exam, but I stopped myself when I realized he wasn't going to ask to do one. Just about anyone on earth could have given me a breast exam right then and I wouldn't have given two shits. He asked me a few questions and left. The surgeon came in, felt my boobs, told me I don't have to see her again for a year, and looked shocked when I told her how far my scar tissue had traveled according to the physical therapist. I got dressed and Gabe and I went out to eat. I had this delicious veggie filled crepe and some grits. I drank 87 cups of coffee.

I felt like I was walking on air. Or, even, water.

Gabe went back to work and I went back to the hospital to wait for my visit with the oncologist. This seemed pointless to me. He would ask me some questions (any aches or pains? still having cycles? taking any new medications? feeling tired?), manipulate my body and undress me and then tell me (say it with me, you know what's coming): "You look great."

Why do we have to do this dance after the wonderful news I just received? Why can't I just go home and celebrate? Of course, I know why. Here's the thing. My triple negative breast cancer was never very likely to recur in the breast. It is a cancer type that is much more likely to metastasize to distant areas of the body. Mammograms are actually likely to be normal for me. Not as likely as for someone who DIDN'T HAVE BREAST CANCER, but still, you know what I'm saying. It's the aches, pains, tiredness, that matter.

But I was still flying high off that mammogram news and the sudden realization that I MADE IT TWO YEARS. Two years with no evidence of disease. The critical two years that every triple negative breast cancer patient can't believe will ever come. And yes, my cancer could come back. It could spread. I've heard it happen to too many women before me not to know that, not to think of the women who made it two or three years out and felt great until...they didn't. And they found out they were stage 4, when they had initially been stage 1 or 2. It could happen, because it sometimes happens with breast cancer, especially when your disease type is aggressive and especially when you're young.

But it hasn't happened yet. Not in two years. And that opens up a bit of the world for me, the world where you all live and I have only visited recently. I have tried my best to be normal, all the while knowing that I will never be the same. While I was waiting for my oncologist, I started checking facebook. I sat there cracking up at the following image posted by Jennie Grimes, a woman I know from ROW who is five years younger than me and dealing with mets, waiting for scan results today that I have never had to do. I wrote her: "LOL! People being wrong on the Internet."

I'm laughing just writing that, even as I'm thinking of her and wondering how she's doing. But here's the thing. As soon as that mammogram came in, knowing what I know about how breast cancer really works, knowing that the mammogram shouldn't have given me this feeling of freedom, knowing that being two years in doesn't mean I won't be dealing with mets myself someday, I started thinking like that anyway. I started thinking random, not cancer...I started thinking about people being wrong on the internet. And it was such a revelation:

...I sat there reading GQ because the hospital's reading choices are completely whack, and there was a dated article about Chris Evans just after Captain America came out. The article was kind of boring, but the pictures of him in these uber-stylish clothes that I can't imagine any man in Chicago ever wearing were interesting. He was showing off his pecs in several of them, and since he's famous for them, you can't really fault him for that. And that's how I learned that Chris Evans has chest hair. Not Steve Carrell style chest hair, but nice sexy chest hair like a 30 year old man should have. And then I started thinking, what? Do they make him wax for the movies? Just airbrush it? WTF? That's like getting a boob job if you DIDN'T have breast cancer. Why are we always trying to improve on things that were ALREADY AWESOME?

...I was cheering on another lady in the waiting room who decided that one of the staff was rude. She was all, oh hell, I've been coming here for nine years, so I don't care about me, but what about the women who are new? What about the women who don't know what their lives will be like and they're just starting chemo? You can't treat people like that! I'm writing a complaint. She should work with some other types of patients. And I was thinking YES! TELL THEM SISTER! And then I thought, NINE YEARS? Hell if I keep coming to see these people for nine years! You should be pissed off just for that!

...I started planning dinner even though I wasn't remotely hungry after that crepe. I also wondered if I would have enough time to shop after the appointment ended and before my parking validation would expire.

...I didn't even mind my little dance with the oncologist. He asked me the questions, I asked him if I should be taking vitamins, he said no, I asked if two years was really the critical point for triple negative cancer, he said the first two or three years is always the most critical for any cancer. I said I felt great. He said You look great. When he left after about a seven minute visit that I had waited 5 hours for, I got dressed and started to upload the picture of me with my evidence of a clean mammogram so I could tell folks via FB who had been worrying about me all day. I waited for five hours, and then spent an extra 90 seconds typing in my status, and a nurse came in demanding to know if I was waiting for something. So I refused to look up at her, kept texting and said "Not anymore."

...I found that I did have time to shop, so I went to Zara and bought myself this pair of ridiculous $40 shorts that I can't wear to work, obviously, and that I'm not sure I can really wear anywhere, since I don't go clubbing and the only person who cares about seeing my legs in shorts this short is married to me and gets to see them all the time. I also tried on a skirt so short that it had little shorts sewn in, just like dresses for 2 year old girls. I started wondering if Zara actually IS a store for 2 year old girls, when I put a dress on that fit me everywhere else but was extremely tight on my chest. MY CHEST. There's hardly anything left! Who are they making these clothes for, exactly? Then, I went to the Disney store to get something for Augie for his birthday and I felt like I was walking into a physical description of the ways we destroy our children. On the right side, I found what I can only imagine to be the "boy aisle." Avengers stuff, spiderman, toy story, cars. On the left, there were princesses. Nothing but princesses. In the back in the "neutral zone" were the classic toys that some genius thought that, gasp, both boys and girls might like: Dumbo. Lion King. Winnie the Pooh. Mickey Mouse. Now, Mickey I get. He is the original disturbing, creepy yet androgynous Disney character. But what does a mom in my situation do? My son is obsessed with Snow White. My daughter thinks Hulk is "green and cute." Augie is more likely to play dress-up than Lenny is and she likes to play with his cars. They both like Pumbaa and 101 Dalmatians. So, I bought a few plush animals we need like we need collective holes in the head and thought to myself, our entire society is going to hell in a handbasket.

...I got all pissed off when I got back to the parking garage and my damn parking ticket wouldn't work in the automated payment terminal. I had to call for assistance from the little parking vending machine. The woman told me to drive to customer service. Fine, I said, where is that? The droning voice answered: "you need to drive to customer service." OK, where? ground floor? This is an enormous parking garage. "You need to drive to customer service." This went on, until I slammed my hand into the machine in disgust. The voice continued talking and the woman behind me said in response to it, "Um, she already left."

...I picked Gabe up early from work so we could go home and take a walk together before getting the kids, something we rarely get to do. I texted our next door neighbor, not beating around the bush at all: "I had a clean mammogram and Gabe and I want to celebrate! Can you or your sister come over after dinner for a little while?" She said sure, Gabe took the kids to the park and I made salmon that we ate on the porch in the beautiful early evening air, and then Gabe and I went to a dead little bar in our neighborhood and got some beer and an enormous brownie sundae. I made him drive because I was fascinated by the response to my status update. Um, 76 likes? more than 30 comments? Do I even actually know that many people? We had 110 people at our goddamn WEDDING. There were 60 people at my 35th birthday party when I was bald and everyone thought I would die so they'd better make this one. Now, I realize that teenagers get that kind of response to their posts about eating breakfast, but this was new to me. Oh, just facebook friends, I thought. I know like 4 people in real life. But actually, that isn't true. Many people who responded are people I do know and interact with in my current, real life. There are all kinds of other folks I don't see in person thrown in there too: ex-boyfriends, friends from college, high school and even grade school, old co-workers, relatives, teenagers who babysit my kids, women from my crew team, moms from playgroups that haven't met in four years.

All people who don't want me to have cancer. People who don't want me to die. People who were happy for their own reasons, including, as Gabe said, that "some of them are probably hoping they don't have to hear anything from you about cancer anymore because they're sick of it!"

Well, too bad. Unless I stop writing this completely, which is a very real and even imminent possibility (are my random ramblings really interesting if they aren't about cancer? this is the thing that still confuses me about blogging), cancer is a part of me now. I do not see the victory in going back to my old self. I'm not sure which self that would be. I am different now, and I'm ok with that. I can do a lot of things and have done a lot of things. I am not trying to prove anything to anyone, not anymore. But that isn't to say that things haven't shifted. After all, for at least the next several years, I will have cancer colds, where you have normal colds (though when I wrote that blog, it turned out to be strep, not a cold). I will be judged for my every action: my diet, my drinking habits, the size of my body, my use of household cleaners. I will try to avoid doctors like the plague because I feel like the medical community has essentially moved into my house and I WANT THEM OUT. Time for a pap smear? Excuse me, aren't I one of the 20% of American women without HPV? What are the other likely causes of cervical cancer, exactly? Why would I do some cancer screening I don't need? Oh, I guess because I like my doctor and I want him to see how well my hair has grown out.

I'll never have that long hair again, if only because the past two years have taught me that the two years it would take to grow it back are better spent doing other things. I'll never feel that my breasts are an erogenous zone. I'll always have that husband who will see them that way for his own sake, until once in a while I realize he is really feeling for cancer lumps, and then I will smack him in the face and yell at him because I don't want those two parts of my life to ever meet again. I will not have normal backaches after spinning. I will have less patience, not more. I will probably never be able to do more than 5 pushups in a row, or ever do pullups or chest flys, because my pec is burned and my pain, while so much better, is still chronic. I will have a 400% higher chance than you of developing another form of cancer because I had breast cancer before age 40. I have an 85-90% chance of making it to five years, meaning that there's a 10-15% chance that I won't live to see my 40th birthday, which is different than the way the odds look for you. Things other people care about will seem petty to me a lot of the time, though as I discovered yesterday, even the petty has the ability to come back to me.

For a while at least, I can live in that space. The one where my biggest concern for the moment is what perfume to wear to the bar where no one else will be. Decisions decisions. That place where the choice is obvious for reasons that are different than your reasons. The room where I smile as I spray myself with "Happy Heart."

That place where I think about other things. The world where Katy Did Cancer. And then didn't have to anymore.

Day 545: Looking Good

I fully intended to blog about my second post-cancer follow-up mammogram yesterday. However, after spending five hours at Northwestern doing the damn test, then waiting for the surgeon and then the oncologist, I decided to do more productive things instead. So I went shopping, and then I had a beer, and then I took a walk.

Because it was normal.

Well, not normal in normal people language. The box for "no abnormalities detected" was not checked. I got the "shows findings that are probably benign" situation that means look, you had breast cancer so your breast is abnormal, but in the grand scheme of things it looks good. I can't really tell you how relieved I felt, but this is my blog so I'm going to try.

I think that the results from yesterday's test answered the soul-searching questions I was asking in my last post. I felt physically relieved--I felt like I could breathe normally again. I had no idea how scatterbrained I had become, or why, how distracted I was from the rest of my life for the past several weeks. How I held it together like a somewhat normal person for my kids for Halloween is beyond me. I did kind of lose it when they came in after Gabe took them trick or treating on the second block (we went with the kids from the old block first--how about our Wizard of Oz themed costumes, huh?!). I was yelling about dinner, scrambling around doing dishes, altogether acting pretty manic. Now that's not entirely unusual for me, but I was taking it to another level. The kids were so high on sugar I don't think they noticed, or at least that's what I'm telling myself.

I was so out of it that I forgot about a conference I was supposed to attend a few weeks ago. Luckily it was local, and I remembered a few hours later and I didn't miss much. I was a complete mess at work and at home; I was doing writing projects in a half-assed way and even screwing up the damn laundry. It was like I was living that dream where you show up naked at work or forget to take your final exams in high school. Except this was real. I've never been like that! But today, my productivity returned, my memory seemed on target, and I felt more like myself. Maybe not entirely like the old Katy, but who was she anyway? Some crazy lady who never knew how to sit down. I'll always be that human version of a Jack Russell terrier on some level--little and crazy and hyper. I'm just not usually so incompetent, so let's hope that part is over.

The process of getting a mammogram is complete bullshit, if you ask me. It's terrible for anyone, but if you've had cancer it's a nightmare. Why don't they let your husband (or mom, or friend, if it's an issue with not wanting men in the waiting rooms with women in their gowns) wait with you? And why does the test have to be so incredibly painful? This time I only had to have the left side scanned, and until about two hours ago--36 hours after the scan--I still had red marks where the machine had crushed my breast and my breastbone. You have to love a test where they say things to you like "now this one will feel like it's crushing your back." "Now this one will feel like an extreme weight on your chest wall." When they got to the scans that were imaging my tumor site and scar tissue, tears sprang to my eyes. She didn't need to tell me to hold my breath; that was involuntary. I have so much pain there anyway (my surgeon finally gave me a prescription for a physical therapist so I can work on the pain and weakness that I still have on the left side of my chest and my arm); and I have a VERY high tolerance for pain! Ugh. Someone needs to figure out what a similar test would be for men (read: testicle-crushing vise) and then we could see whether mammograms as they are today would be the standard of care. I think we would be headed for the painless 3d ultrasound.

So you wince and grit your teeth while the technician moves you into ungodly positions. Then, you finish, and the woman (I can't imagine a man doing mammograms, even though I never feel that gender matters in medicine. But it's such a violent test with a woman contorting and smashing you that it would seem obscene with a man doing it.) tells you that you need to wait for the radiologist to decide if more pictures are needed, and what the results are. In the meantime you have the following text exchange with your husband, who has been a nervous wreck himself:

K: Done but waiting for results
G: OK. I don't understand why they don't let me be with you. How terrible was it?
K: Hurt pretty bad but it's over
G: I love you. I'll see you soon and you will be fine. I hate the wait as much as you do.
K: You could probably come back it's waiting room C&D (I thought they would allow this since a woman was accompanying her mother, but that was because she didn't speak English. Gabe was ultimately denied entry to the waiting area).
G: OK I'll ask up here
K: Results back I'm fine!! Getting dressed
G: Thank goodness! They won't let me back there so I'll meet you at the doctors waiting room

And that sums it up. The technician had told me that I only had one more six month follow up before I go to annual scans. So look out May 8, 2011. That will be an important graduation for this triple negative girl, who is at highest risk of recurrence in those two years.

I was so relieved and happy when I saw Gabe that I couldn't stop talking. We had all kinds of annoying waiting to do for the other visits, but damn. It was crazy how I suddenly felt like myself, suddenly felt hungry even, how I could tell myself that maybe I might make it out of this mess after all.

Of course, truthfully, for someone who is triple negative like me, I might be more likely to have cancer metasticize than recur locally. But as long as I don't have symptoms of that, I am going to try not to think about it. I kept asking doctors why they aren't doing ultrasounds of my breasts, given the problems that mammography presents for young women/women with dense breasts. Their answers were long and actually satisfied me for a change. The surgeon thought everything looked great, and we talked a little bit about my bout with mastitis. Is there anything that can be done to avoid that in the future? No, not really. A bug bite can cause it. And mouth to nipple contact can cause it too (she said, purposefully NOT looking over at Gabe) so you should concentrate on the other side for that. Right, I said. We got that message loud and clear.

She sent me on my way and I went to the oncologist. Check this out...I actually made the guy laugh. I didn't think that was possible. He shook my hand and asked how I was doing. Great! I said. Well, I'm sick, but otherwise great. He thought this was hilarious. You feel good since it's just a normal sickness, huh? You got that right, brother. He has been growing on me since I've finished chemo. I think his complete lack of human emotion is absurd, and obnoxious when you are dealing with something as terrible as the effects of cancer and chemotherapy, but when you're happy with your test results and you don't need anyone to be understanding, the stoicism doesn't offend so much. He did his exams, undressed me from my gown like always, asked his questions, and surprisingly, answered all of mine. Then he said his normal parting words: You look good. You look really good, especially from a cancer perspective. Enjoy the holidays. You look good.

I heard that, doc. I wanted to say, what do you mean, especially? Weirdo.

I visited my old chemo nurse afterwards, before I headed over to the mag mile. I don't know why I still feel the urge to do that. I have had doctors who have saved my life, helped me walk again, delivered my baby, and I had no desire to ever see them again. But my chemo nurse, and my ob/gyn, are exceptions. I think I just like them, as people. I like to see her, to let her rib me about thinking I would be bald and in menopause forever. But god is it weird to be in that chemo area, listening to the sounds of the machines, hearing the beeps that tell the nurses to increase the saline solution, watching them tap arms, patiently trying to coax the vein out, seeing the women who are cold and bored and sometimes alone and there are so damn many of them, in just that one floor of that one hospital. What bullshit.

Then after Gabe got home from work I started texting teenagers from the neighborhood. I decided we just had to celebrate. Ultimately one of the girls next door came over, and we went to greektown for dinner. I got a huge martini, as you can see. While driving over we realized that the kids had been looking at photos with the babysitter, and there were a bunch in there when I was bald. There was even one the kids weren't supposed to see, of my bruises after surgery. I thought holy shit, I don't think she knows I had cancer! Well, Gabe said, she knows now. We asked her about it when we got home and she played it off like she knew already. Good god, the things I put these kids through. Isn't it bad enough that Gabe gives me those sappy puppy dog eyes in their presence? Then they have to sit there while Augie points out "that's my mommy!" in a photo of a woman with no hair to speak of, until he goes onto the next one: "Daddy kissing mommy!" and again, there's Gabe kissing my bald head. I was loving all the teenagers last night though as I looked for a sitter at that extreme last minute. How great is it that we live in a place where a 17 year old texts me she'll be over in 15 minutes after I ask her to babysit RIGHT NOW, and she puts her slippers on and knocks on our back door to come in? Because let me tell you, last night of all nights, I needed to celebrate, and I needed a drink!

Those who are friends with me on facebook probably saw my rant about the new study saying that moderate alcohol use can increase breast cancer risk. Jesus Christ. Has there ever been a study done on a woman's health issue that DIDN'T try to blame her for her disease? And further, that focused on the so-called sin issues? Shouldn't everyone try not to drink too much, exercise, and eat right? I'm waiting for the study that says: "Save yourself for your husband, or you might risk contracting breast cancer." Or "honor and obey or you will surely get invasive ductal carcinoma" or just "be a good girl or you will get breast cancer!!" I mean shit, you have 30 years to study this disease and that's the best you can come up with? Couldn't you study the environment, additives in food, effects of birth control, or something? And how do you explain the lower rates of breast cancer in countries like France where women drink EVERY DAY?

Can't drink, can't smoke, what can you do? Must exercise like crazy, must go vegan, yadda yadda. I was healthy, and skinny, and nursing, and I was never much of a drinker, and I got breast cancer. A really aggressive kind of breast cancer that was probably predicated on something else, other than lifestyle factors, entirely. So just let me live my life, let a girl have a little vice. I've been hearing this song my whole life. I know there are certain things that trigger seizures, for example. I know that strobe lights are bad for me. But the number one thing that triggers seizures is being unlucky enough to have epilepsy. "Normal" people do not start having seizures from strobe lights, or video games, or roller coasters, or because of insomnia. Sometimes shit happens. Study that phenomenon, perhaps. It would be just as useful, in my opinion: Medical team spends 30 years researching life cycle phenomenon and concludes that shit happens, all kinds of shit, and you just have to deal with it and live your life anyway.

I'll drink to that! Right now, things are looking good.

Day 358: Normal!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don't have breast cancer anymore.

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

200 Days

It seems like such a long time, and such a short time too. 200 days is way too long to have focused so much on cancer, and yet in terms of other things, such as the way the kids are growing up, it really does still fly by no matter what else you're doing. I should be officially done with the active part of my cancer treatment at Day 218. I will be doing the follow-ups for years, and I will still very much be a cancer patient, as I am now. Yesterday I was panicking because the pain in my spine is back. No matter that it went away for a month, that it's not there right now, that my son weighs 26 pounds and I pick him up a lot more or that I've been doing a new exercise routine. I'm in the new club now. Back pain? Bone cancer! That part is really hard. I'm just trying to ignore it now, assuming that I'm overreacting.

But I'm not really. Cancer crops up years later, where you least expect it, right when you think it's all behind you. I'm not going to focus on that now, because I am much more pissed off about the effects of chemo than of cancer itself today. Let me just shout out that I HATE menopause. I hate everything about it and how unfair it is that I have it at age 35. My hot flashes are a little better but still ridiculous. I'm figuring out how to deal with the changes in my sex life and libido, and even though I know I have a healthier sex life than many healthy people, no matter what anyone says I really HATE that part too. And boy do I hate my hair and my lack of eyebrows. I tried to figure out how to draw on eyebrows yesterday, because while my hair is coming in, my eyebrows seem to be thinning more if anything. I don't know if you can see it in this picture--do the eyebrows look bizarre? I've been bald for more than five months and I'm just now trying out the eyebrow makeup and I have no idea what I'm doing. I feel like I looked a hundred times better when I was bald as a cueball, with eyebrows. My hair is much longer than when I buzzed it off, but it's so fine and soft that it just sticks straight up and is not even thinking about lying flat on my head. Ugh.

I think my chemo-hating mood is exacerbated by the fact that I'm just starting to feel some radiation fatigue. I was told it would hit me right at day 20, and I had my 21st treatment today--2/3 done! This morning I'm just feeling exhausted, even though I did get some sleep. Don't get me wrong, I'm still planning on walking about three miles to my pilates session, but it might take me a minute. It also might storm, which would ruin my plan. It's been in the 60s here, warm enough to wear a skirt and short sleeves, as you see in the picture here. The temperature is supposed to drop 30 degrees today though. Ah, Chicago.

Anyway, my skin is doing remarkably well according to all the doctors and nurses, but it was irritated enough under my breast that I stopped wearing a bra a few days ago. I don't really need one anymore anyway, since I've lost weight even there, so I'll give my chest a break I guess. Aquaphor is still working for me, so I've just invested in a lot of camisoles and tank tops that will get thrown away when this is all said and done. No one tells you about these types of issues when you start treatment. Hopefully no one who reads this will ever need this information, but if you do, remember this: The cream will ruin your clothes, for good. Don't find out the hard way, as I did.

I keep hoping that with all the press around breast cancer, that things will get better or that there will be less mystery around the process of cancer. And yet I don't see any evidence of that. My acupuncturist, who had breast cancer 10 years ago, was talking about how she chastised her doctor when she had her lumpectomy because the whole process--the wire, the marking, the procedures you have before the surgery that they don't tell you about, how they leave you sitting in a wheelchair by yourself in the basement crying before they get you for surgery--was so terrible. I sent her a link to my lumpectomy blog as our experiences sounded so similar. I was glad to not be the only person to be pissed off about the whole thing, but also really sad. In ten years, nothing has changed, and no one seems to be listening.

Many people with other types of cancer might be pretty annoyed with what I'm saying. Breast cancer makes all the headlines, gets all the walks and the hope and all. Other cancers are often ignored or pushed to the side. But the hype doesn't seem to have changed much about the experience of having breast cancer itself, down to the stubborn refusal of the medical community to change its practices. Why will I be getting mammograms several times a year for the next several years when it has been proven that mammography is ineffective for young women, especially for women under 45? Why not ultrasound? When I think back to my initial denial--my one day of denial--on May 3 when I was in for the ultrasound that was supposed to show my clogged milk duct and instead showed two perfectly detectable round masses, and a third one in shadow--it was as clear as day. I didn't know it then, even though they were talking over my head about it, but my cancer was glaring in its obviousness: See this one here, at 2:30? And this one at 3? (They look at the breast like a clock, and your tumors get names for the time, but they don't tell you they're tumors right then. I wonder what they compare testicles to?) The mammogram that followed was almost pointless. I can still see that ultrasound picture as if it just happened five minutes ago, though at that time I had no idea what it would mean for me, for my life, for this 200 days.

I'm tired of writing now and need to get to pilates, so I'll end by saying that I hope that I will be able to look back on this 200 days someday. I don't mean to say that I hope I look back on it and laugh, or that I look back and realize that my life changed for the better or I felt the love or anything. I just want to be able to look back, to still be here to do that. That would be enough.

Day 45

Last night ended one of the more interesting 36 hour periods I've ever spent in my life. After work on Thursday, I met up with my mom and we took a long and slow road out to the western suburbs to a specialty wig shop/boutique for cancer patients. We got there just a few minutes before my free consultation was to begin, and there wasn't much to see in the store. Why was I there, you ask? Well, I figured I should at least look into getting a wig. I've heard from a lot of young women with kids who say that the worst part of being bald during chemo, or one of them anyway, is that you go out with your family and get all these looks of pity from everyone. I'm already familiar with the pity looks and I still have all my hair. So while I assume my family, friends and co-workers can deal with seeing me bald or at least with a scarf on, there is something to be said for anonymity if you're just trying to go to the grocery store.

I sat in the shop, listening to one of the workers argue with a woman who wanted to walk out of there that day with a wig since her hair was thinning right then. This went on for a long time and it seemed a little contentious given the circumstances. While we were waiting I mentioned to my mom that I didn't want a human hair wig. Besides the exorbitant expense, human hair is exactly that--you have to wash it and take care of it like real hair. No thanks. The owner of the shop must have overheard me, because she came over and started to try and do a hard sell on a human hair wig. They last so much longer! You'll be wearing it for a year! (Hell no I won't. Just like every single other woman with breast cancer I've ever met, as soon as I get that men's buzz cut look going, the wigs and scarves are off). You can curl it! And style it! And blow dry it! (Um, I don't do any of those things with my own hair. In fact, I don't even know how). I kind of wanted to leave at that point, and they were running behind, and it was hot and I was fussy. I mean, what's up with the extreme sales pitch on a woman with cancer? But then my "stylist" came out to get me.

I liked her from the start. She gave me that once over that all hair stylists do when they meet you for the first time. No pity, no asking how old I am, or lamenting my pretty hair. She whispered to me that if I didn't want a human hair wig, I shouldn't get one, no matter what her boss said. Synthetic is fine--that's what she used.

Ah, now I understood the normal interaction. She's in the club. I told her if I got a wig I thought I wanted something short, with bangs, to hide my eyebrows after they fall out. I told her I don't do hair, don't style it, that I've always been a redhead so I thought I wanted a different color. She said ok, we'll see, but you know what? You're a redhead. I'm Italian, and I was happy to get fine sleek hair in my wig instead of my coarse natural hair, but I would've looked ridiculous with light hair. OK, but I don't want a red wig, I don't think. She brought out a bunch of wigs and my foray into looking like someone other than me began.

The first two were long. One was a brown Rachel from friends looking thing. Surprisingly, I didn't look like an idiot, but I didn't look too good either. Then some Beyonce-style blonde/brown curls came out and we all fell out laughing at that one. After that two short, layered, Meg-Ryan type of brown wigs. I was really surprised. I looked like a normal person. Not like me necessarily, but dark brown hair looked good on me with my eyes. I thought one of those could work. Then she gave me a Molly Ringwald style (present day Molly--long, straight with bangs) to see how I liked the red.

Well, I liked it. She was right. I'm a redhead. I look the most normal, the most like myself, with red hair. After all, this is not a wig for a costume party. It's a wig that's intended to help you blend into the world while you're poisoning yourself with chemo. It helps to look like a semblance of yourself. The hair color was good too. It's not natural and it's not mine, but if you didn't know I had cancer, or if you hadn't seen me recently, you might think I'd straightened my hair and put highlights in or something. I tried on some more red wigs, short, chin length, all straight--no curls. I only cut my hair three or four times a year, and those are the only times I ever see it straight, so I figured I'd at least go for a different style than my regular hair, which I will still sadly miss. My stylist and my mom kept raving about how cute all the wigs were, and it was hard to decide. I said I needed votes, because I would really rather keep my own hair, and all these wigs looked poofy on me because I have so much hair it was hard to contain inside the wig cap. But I found a few styles that made me look like me, if I were the type of person who "did" her hair.

But forget the wigs. I'll surprise you with a bald pic followed by a wig pic at some point. I really want to talk about my stylist. She was maybe one of the best people I've spoken to about cancer since I've received my diagnosis. She's older than me, 47 (with grandkids!) and she was diagnosed with triple negative breast cancer 8 years ago. She did chemo, including AC and taxotere, she had a lumpectomy and had to go back for a re-excision. We had so much in common. But more than anything, I loved her attitude, which was very open about cancer without it seeming at all out of place, depressing, or fake. Not that other cancer survivors I've spoken to have been any of those things, because actually everyone I've talked to has been great, but something about this woman was just really neat. She kept saying "yeah, this is awful," but she was joking with me too, saying she told the surgeon she should have just "taken a third" of the breast instead of going back in for the re-excision. She told me the wigs looked cute on me because I was cute. She said that when her hair grew in, she looked like her dad. That after 8 years, her doctor tells her "oh, you're good," since she's triple negative and once you make it through the first few years your chances of recurrence are much lower. She was just really easy to talk to, and it was more like going to get my hair done than going to do some cancer-related thing. Maybe I'm more of a beautyshop gossip person than a support group person. Who knows? The strange thing is, it was actually kind of...fun.

Which I really needed, more than I even knew. When I got home, within about an hour, Gabe was taking Augie to the emergency room with a 104 fever and strange breathing. He had to go into the baby-torture chest xray machine (have you seen those? They stick the baby in a tube with their arms sticking up...completely pathetic), and I was at home while Lenny slept, freaking out, unable to believe I couldn't be there with my baby. If Lenny had to go to the ER as a baby, which she did a few times, of course we both went. This was my first time as a mom not being able to be there for my kid. But we couldn't really bring Lenny along, and it's still hard for me to carry Augie for long periods of time. The kid weighs 22 pounds (he's 1. his sister is 4 and weighs, wait for it...29 pounds) so holding him for three hours in between surgeries didn't seem like a good idea. He came home in one piece--who knows what was wrong. Sick, dehydrated, his heart working too fast due to the fever. What a nightmare.

The fun continued in the morning, when I went in for my mammogram by myself since Gabe needed to be home with the baby. I thought it would be quick, even though I was really nervous about finding out if there was anything left that would preclude me from doing a re-excision. I'm actually too tired to get into the whole drama (our power was out for a while, so I started this some time ago and my train of thought is a little lost), but I think the whole city of Chicago was at Northwestern for a mammogram. I had a 9:30 appointment and I was there for over three hours. I had to go back three separate times for more pictures with three separate technicians. By the end, my stitches were bleeding. I made a few friends in the waiting room--, several other cancer patients were waiting for one thing or another (one was going for a re-excision, like me, and another needed a wire placed for a mastectomy, which really boggles my mind. You're cutting it off! What's up with the wire?). We were all really pissed, scared, and incredulous at the situation. I thought it couldn't be good if they kept calling me back. Finally, I was given a piece of paper and told I was done.

Excuse me? I was told I would be leaving there secure in the knowledge of whether or not I could go ahead with my re-excision next week. I started getting pissed. Many of you know what I can be like under normal circumstances, so just add cancer and shake and you can imagine. I said, I need to tell my babysitters what I'm doing so I can come into surgery, I need to know if there's something else there because if there is I'm not doing the damn excision, I'm going to start chemo and then do it, or do a mastectomy. Again, the nurse seemed surprised by my vehemence. What are we, sheep? You think I can handle breast cancer but I can't tell you what I need you to do? Please. So as I insisted, the radiologist saw me, and started telling me about some calcification (a single point calc she called it) that was far from the tumor site, but they could watch it. Hold the phone. My margin area is clear? Yes, there is nothing else suspicious there. You don't need a wire. But there's something else on the other side of the breast? Well, it's probably nothing, just a single point.

You could say that to a normal person. A woman with cancer doesn't give a shit if it's a single point. If there's something else in there, forget it, I'm done. She told me I could do some weird biopsy where I lie face down for 2 hours and they suction the "calc." I made it clear that if I didn't know for sure that that was nothing, the re-excision wouldn't happen. So get me a biopsy appointment on Monday or we have a problem. I know I was glaring and it's possible there was steam coming out of my ears. She looked at me with a mix of confusion, and I think, fear--and told me to wait.

As you all know, I've gotten good at that. At least at that point they had let me remove the bloody gauze from my chest and get dressed. Then I was called into her office and we actually looked at my pictures on the computer. This doesn't happen too often. She was excited to show me that my "calc" was "dermal" so it was in the skin and absolutely benign and no big deal. So why did you make me lose my frigging mind? Was this training day or what? Disgusted, but also happy with the news, I caught a cab and went to work.

Now just as an aside, I suddenly have a new boss, as they decided to do a spur of the moment re-org a week ago. Normally I would be very upset about this, and I was worried that my boss was being very supportive of my situation, but now I would be dealing with someone new. I hate the idea of change right now as I need some continuity, but I also really couldn't worry about it. I talked to my new boss and everything seems cool. I was able to tell her that I wanted new opportunities, was excited to work with her, but that I also really had no idea at all what the next 6 months or more would be like. She understood. In any other time, this situation would have caused some stress for me. Instead, I was relieved to be at work on Friday afternoon, unable to concentrate, with the knowledge that two bosses--my old one and my new one--were ok with my lack of productivity for the day.

One of the only things I accomplished was that I talked to a fertility specialist, who told me the long process of egg freezing that was available to me. Oh, to be a man! Even a man with cancer! A few minutes with a magazine and you're done, future fertility intact. No daily shots in your stomach, surgery, hormones, ugh. The specialist told me that if I had children she wouldn't recommend it, because the type of chemo I'm doing gives me a less than 20% chance of permanent loss of ovarian function. I said, both of them? She was talking about the ACT. I guess the TC has a 30-70% chance. You think when I asked if there were side effect differences they could have told me that? Seems significant for a 34 year old, even if I don't want more kids. There's the whole menopause issue after all--must be small potatoes in the oncologist's eyes. Since Gabe and I didn't think we wanted more kids, and since I know in my hear that pregnancy would be too emotional for me after cancer--too many hormonal changes, too much weight gain stopping me from feeling lumps in my breasts, too much sadness associated with nursing considering how I found my cancer--this talk with the fertility person was almost irrelevant.

Except that it wasn't, because it cemented the ACT over TC decision in my mind. So after this conversation I walked to the train in the rain. I got on, and within two minutes of me finding a seat--no joke--the sky turned green and the train started to shake in the station. Trees were being broken in half, folks were talking about how their office buildings were evacuated, and we all started calling home to say the train is moving while standing still and there's no way we will be leaving anytime soon because this is looking like some tornado type shit right about now.

And then the train departed, on time.

I thought, you've got to be kidding. What-- I got through this cancer diagnosis, only to die in some Helen Hunt scenario, except that instead of cows flying through the air, it was going to be our commuter train? Everyone was either silent or talking too fast. Did the train really just leave the station in that weather? Tornado-force winds up to 70 mph? Is this really happening?

How we got home I don't know. It was scary as hell. And very stupid of Metra. The bad part of the storm was over in 15 minutes. It wrecked havoc all over Chicago. They probably could've waited. But after calling Gabe and telling him how scary it was, I hung up and actually started to laugh. Life is just absurd. I felt like I was being punkd. Where's Ashton Kutcher?

Speaking of random pop culture references, I took Lenny to see Toy Story 3 in 3D this morning. I loved the movie, though it was very dark in parts. Lenny loved it too--she brought her Slinky Dog along. I couldn't believe Totoro had a guest appearance. I also couldn't believe how much I sobbed near the end. Me! I only cry in very inappropriate movie settings, like in Armageddon when Paris or whatever is obliterated and I was sad about all the millions of dead people I wasn't really supposed to think about. I'm crying that Andy is leaving for college, and his mom is sad. It's touching, sure. But why am I crying? Because I really want to see my kids go to college. I want to raise them and let them go. I don't want to miss it. I want to know what they look like and what they like to do. I want to lose this guilty feeling where I want time to speed up so I can be through this cancer year, because I want to live long enough to wish time would slow down and I could have more time with them.

And this might leave me tomorrow, but for the rest of the day I felt this strange sad peace with my cancer. I'm going to do this re-excision. I'm going to set up chemo whether my next margins are clear or not. If my margins are clear, great--I will finish chemo and start radiation. If not, I will probably do a mastectomy and reconstruction after chemo. I'm not doing a third lumpectomy. It's good to have decisions made, even though I will be unsure of the state of my cancer and my margins for probably another week and a half. I have to recover from another surgery, I have to go through chemo, I will have scary times due to germs brought home by my kids, I will have to figure out how the hell to take care of my kids, and I will not know until it's over if I have permanent side effects and I will never know for sure if the chemo has worked.

But I have to do it, don't I? There's no going back. There's only so much in the triple negative arsenal. I need to make my peace with chemo in order to make my kids' graduations. It's not fair, and it's awful. But as a dear, older friend from the neighborhood told me this morning, after having just lost her husband of over 50 years yesterday, your kids are fine. But they won't be if you're not there. You're the most important person in your house right now. She also told me what I am going through is worse than what she is going through (she is also a breast cancer survivor). Now I know 150% that that is completely, utterly, impossible. What I'm going through isn't a death sentence. Death is final, and she is dealing with death, and so much loss, and a complete upheaval in her life. I am dealing with loss, and illness, and its real, but it isn't my forever-- at least not yet.

Day 36: Post Op Report

This is not the blog I expected to write today. I thought I'd be writing about how at around midnight on Monday, I suddenly couldn't feel my arm, all the way down to the fingers, about how I panicked and called the doctor on call who told me this was "normal" after lymph nodes are removed, about how I still can't move my arm very well at all. I thought I'd write about how wonderful it feels through all of that to have this cancer out of my body. I thought I'd write about the hard day I had on Tuesday, when I was very productive doing a lot of writing while working from home but then I just started losing it for hours in the late afternoon, sad and crying and thinking that while I should have all these fun things to look forward to, the only thing I saw right then looming in my future was chemo.

But that's not the blog I'm writing today. I'm writing about the fact that I have to go back for more surgery. I have one positive margin. I am still stage one, still had three relatively small tumors, and still have clear lymph nodes. But.

I still have cancer in my body.

As soon as the physician's assistant who was giving me the pathology walked in today, I knew. I didn't tell Gabe that until later but I could see it in her face. This might be a curse of being a very good read of people--sometimes I know how they feel before they do. Anyway she started in on my stage, tumor size, etc. I knew as well as anyone that if I had clear margins she would have told me that first thing, and then told me to wait a minute to pick up my baby and then sent me on my way. That's not what happened. When she was done telling me about the margin, she told me that they could do a re-excision, but if that excision found more positive margins, we should "think about other options."

She meant have a mastectomy. Besides the fact that I want to hold on to my body parts if I can, that seems akin to having to go through labor and a c-section. I'd rather just know I had to do a c-section in the first place, right?

I have felt disappointed and discouraged and betrayed many times in my life. I have made painful decisions, chosen the hard way, second guessed myself, and all of that. I was beyond devastated when I received my cancer diagnosis. But this was worse, because I had allowed myself to be happy that I was done with one stage of things that needed to be done. And then that was taken away from me too. To top it off, when they came back with a new surgery date, they told me I would have to wait until July 9.

I had held it together until then. Only a few tears. I completely lost my shit at that point. I was sobbing, saying I couldn't wait that long, how could they ask me to live with cancer in my body for that much longer and then put off the rest of my treatment. I said, we have help for this summer. My relatives are teachers and have the summer off, and I thought I'd get through some of chemo with their help. We were told the surgeon was going on vacation, and then both Gabe and I lost it a bit more. Don't talk to me about anyone's frigging vacation. We were told this was standard procedure. I said this is not standard for me. Gabe said I know this is your job but this isn't just a job to us.

The nurse left--she seemed unsure of how to deal with us crazy people, which was surprising to me. What do they expect? She sent the physician's assistant back in, and I lost it even further. I told her, look, I'm 34. My kids are 1 and 4. I need to live. I need to know this isn't going to spread, and I need to move on with my life. The month between diagnosis and surgery for me was the worst thing I've ever gone through and you're asking me to do it again. I am supposed to meet the oncologist on Monday and find out my treatment schedule. Now what am I going to do?

Earlier in the appointment this assistant had asked me when my son was born. It turns out we had our kids on the same day at the same hospital. While I was sobbing all the statements and questions above, Gabe asked her, what would you do if this was you? And honestly, I think that's one reason she went and called the surgeon while she was on vacation with her family (it turns out my surgeon has a three year old and a six month old). I could see that she realized how hard it would be. It's hard for anyone to have cancer, harder if you have children, even harder if you have a baby who just can't understand what is happening and lifts his arms up to you and cries when you can't pick him up, who now will only drink a bottle from you, who misses you even when you're right there in the room. I told her, give me another surgeon if you have to, I don't care. Even if it only saves me a week's time. That's a week of my life and my sanity.

Gabe and I went out to lunch and went back to my office. I did a little work, talked to another cancer survivor, and gripped my cellphone in my hand waiting for that call to tell me if an earlier surgery date would be available. It didn't come. We picked the kids up from daycare, Lenny went to play next door and I started to get ready to take a walk while Gabe fed Augie dinner.

Then the phone rang.

It was the surgeon herself, and I could hear kids screaming in the background. She started talking to me about my pathology, that it was good, stage one, etc. She said she knew I had talked to them about needing to do a re-excision (that's what they call it. just call it lumpectomy #2 and stop bullshitting me). And then she told me I had a few options. I could do chemo first, and she could re-excise later. That option made me feel better--I could make sure the cancer hadn't spread. Or, I could get in for another mammogram that would tell them if I needed another wire placed (she didn't say needle loc!).

Now I don't get why a mammogram would show something else after I just had one on Friday, but this is the way they do things. If I get in for a mammogram and it doesn't show any other spots or masses of concern, I can go in for a re-excision on June 23. If it does show something, we need to find another date because there's no time on that date to place the wire. I was so relieved--16 days earlier. That's 16 days to not wonder if cancer is spreading to my lymph nodes, even though she told me that wouldn't happen. She also told me that I should assume the cancer is already out--this margin issue doesn't mean there's still cancer in my body, it just means they need to be more sure so that it doesn't spread throughout the breast.

Whatever. To me, and to every other woman who hears this news, it means I still have cancer. And I can't move on to that next phase of this process until it's gone. And I have to wait, and waiting is worse than pain, or numb arms, or insomnia caused by how uncomfortable the left side of my body has become. So, I got on the phone to schedule the mammogram and got an appointment for June 18. I will know that day if it's clear and I can do June 23. If not, I am inclined to do the following: start chemo and then have the whole breast cut off, avoiding radiation. That will make me sad on so many levels if I have to do it, but this uncertainty has drained me to the bone.

I know that the effect this is having on me is not unique. My mom has a friend who received this re-excision news and stayed in bed crying for two days even though that is very contrary to her nature. Gabe said that the fact that I was still standing was a testament to something about me, though he wasn't sure what. I think I know what it is, and it isn't good, but it isn't bad either. I think that most of the time I see things as they are, rather than how I would like them to be. That's what makes this setback so hard--the one time I decided to be really positive and assume everything was great, rather than just wait and see, check out what happens!

Let me try and explain, if only so I can understand myself better myself. Four months after Gabe and I got married, his aunt and grandma sent us on a belated honeymoon to Maui. Hawaii is the most beautiful place I have ever seen. It's as if every other place has pollution and weeds and they have rainbows and flowers. The bad weather is wonderful, the scenery doesn't look real. We considered quitting our jobs and working in the local grocery store, until we realized it would take about 5 jobs a piece to afford the place. We never wanted to leave.

But we had to leave this paradise and go home to Chicago's February. It was a direct flight, 10 hours. Torture. You get so bored, especially if you're like me and you can't sleep through the flight. We were told when we got on the plane that there were solar flares, and we had to fly low, and that we would expect some serious turbulence once we got across the Pacific. Um, that's only halfway through the flight. Not good news.

I have always feared flying, in the sense that I grip the armrests until my knuckles turn white with every takeoff and landing. And yet I was always been kind of proud that it didn't stop me from flying. I even chose a career that used to include a decent amount of travel, until I spent much of the last 5 years either pregnant or nursing and felt that traveling was too much of a pain in the ass. When flying I have never cried or threw up or screamed or anything--I just held on and waited.

This time, on our flight home, we hit massive turbulence in California and it didn't stop. This was an overnight flight and most of the people on the plane were asleep. At one point I was looking at the little TV screen on the seat-back in front of us, watching our plane's progress. As I found out later, so was Gabe. Suddenly, the plane plummeted 5,000 feet, with a huge bang. Gabe and I grabbed hands and looked at each other and I honestly thought, I am looking at my new husband for the last time because we are going to die, right now. I didn't scream, though my heart was in my throat, so maybe that was why. In the end, we didn't die, obviously. But that was not a normal situation and I could see it.

How I envied all those people who could sleep through that. And I'm not saying that being awake was better, just that some people can sleep on airplanes and some people can't. I'm in the latter camp, for better or worse. I could go through this cancer experience asleep, or with my eyes closed, thinking everything was fine...if I was different. I'm not. This cancer is bad, and something else bad has happened. It doesn't mean I can't or won't live my life doing everything the best I can. But emotionally I feel like my eyes are pried open all the time and I'm staring the beast in the face. I can't fight him physically, because he's not some man standing in front of me who I can slap in the face. He's me, he's my body. I need to kill certain parts of me to keep the rest going. It's worth it, but it's hell until you get there.

That's what I'm waiting for now. Those moments of terror on the plane were few. I'm having those moments now, but they will last months, even years. I know they will get better. Until that time, I'm trying to just hold on to the armrest and wait until I get back home, that place that seemed so mediocre before compared to the beauty of another place or another life I might have lived, where that frigid February wind and darkness and smog were so beautiful because I had finally landed safely. It's just going to take a while to get there, I guess.

Day 32: Lumpectomy blog

After writing my short blog yesterday I felt like writing a longer one on the surgery itself.

Note the pic of the unsuspecting Katy taken a few minutes before she left for the hospital for surgery on Friday. I thought I would blog about this experience, as I think that the medical community does little to nothing to prepare you for what's going to happen. First of all, a lumpectomy is not one procedure. For me, it was six procedures. For some people, it is seven, and others have to do the whole thing twice. More on that later. But for someone who has had a lot of medical procedures done, everything that happened was a little overwhelming, even for me. As I'm describing this, keep in mind that we're talking about breasts--sensitive stuff. Women, you get the pain involved with this sensitive area of your body. Men, just substitute "testicle" for "breast" with everything I say.

The day before surgery I got a call from someone to tell me where to go and what time to be there. I needed to be there at 6:45--but in a different building than where I would have surgery. Huh? Why? You will be getting mapped for your sentinel node biopsy. OK, I knew I was having the lumpectomy and the sentinel node procedure, but mapping? Then I would go to another building for my "needle loc." These people have got to be kidding. What the hell is that? Luckily, a co-worker who had gone through a lumpectomy had warned me that they thread a wire through your tumor prior to surgery. You'd think they could tell you that, it's not like that's some minor inconvenience. And why not call it "wire placement" or something that makes sense?

So I specifically asked this woman if I would be able to wear lotion or deodorant the day of surgery. She seemed surprised that I asked this question. Why would that matter? She actually asked me that. Um, do I need another ultrasound or mammogram? No, she said. Well, she was flat out wrong. I needed both. Shouldn't the person giving pre-op instructions know what the hell she's talking about? I had been annoyed not to hear anything from anyone by 3 pm, so I called my surgeon's nurse, who called me back and actually gave me the right information.

So we show up at the hospital at 6:30 in the morning and I haven't eaten or drunk anything, including water, since 8 the night before. I'm already hungry. A very nice nurse comes to get me to take me back for my mapping. She was great, and I thought it was funny that she kept saying "if it's all right with you, I'm going to do..." What am I going to say? It's not ok, I want to go home? She was cute though. The mapping starts with "an injection of radioactive dye" into your breast. Think about that. Radioactive. Injection. In your breast. Or, OW. Gabe asked how long the radiation stays in your body. For a week, but you aren't actually radioactive after 6 hours, so you can be around your kids. Awesome.

She told me that the injection "is definitely not fun. It will not feel good, but I'm told the pain goes away in about 30 seconds." Now this is a long, laborious procedure. You get injected and then they start an hour to two hour long process of taking 5-minute xrays of your chest in a fairly claustrophobic machine. For most of the hour I was there, my left arm was over my head. I was "lucky"--they found my sentinel node quickly and I didn't have to stay the second hour. But after thirty MINUTES, when I could still feel the pain from the injection (no anesthesia here), I complained about it. The nurse was shocked. You aren't supposed to still feel that! I had been warned by other women that thin-ness, especially combined with having small breasts, makes everything much more painful. So I asked if that could be the case here. And she said, "well, yes, the women who come in here who are bigger women, or who have very big breasts, they don't feel a thing. It's not fair, huh. Being skinny is supposed to be a good thing, but I guess it won't be for you, at least not today."

Boy was she right about that one.

After all of this high-tech medical stuff, this is what the mapping comes down to: a Sharpie. They take a marker and draw a blue X under your arm. Who knew? When this was done, we went to collect my clothes and my husband and the nurse walked us through the bowels of Prentice hospital. Now this building was completely rebuilt maybe three years ago, and the basement we walked through was dank, decrepit, and looked like a 50 year old CTA subway station. There must be a rule that if it's underground in Chicago, it has to be just short of repulsive.

So we get dropped off at the next appointment and I walk up to the next reception desk. The guy asks me what I'm there for, and I say I'm there to get a wire placed for a lumpectomy. Oh, you're here for a needle loc. I kind of wanted to give him the finger.

Instead I went back into the same waiting area I had gone into for my initial ultrasound, mammogram and biopsy before I was diagnosed. I was ready for surgery, in the sense that I had taken off all my clothes and put on two hospital gowns and hospital booties. But ready is a relative term in this situation.

There was another woman in the waiting area, probably in her sixties. Now those who have had mammograms recognize that all women who are getting them are terrified, and people deal with this in different ways. Many women talk nervously to each other. Me, I read People magazine. This lady was a talker and I hardly got to read a page before she started in on me. She said, oh you look like you're ready for surgery! I said yes, I'm having a lumpectomy. Oh, did you get your biopsy back yet? Is it benign? I thought, Hello, did you hear what I just said? I just ignored her. She went on and on about different issues she's had and how it can be many things that aren't cancer. She asked me again if my biopsy was benign. No, they know that I have cancer. I'm here to get it removed. Then she told me her mother died of breast cancer. Thanks. She asked how old I was, and I told her 34. Oh, my daughter downstairs is 35 and she doesn't even have kids! Right, because this is clearly about HER. When this lady left, she didn't even wish me luck or say goodbye. Note to all out there: don't be like this lady. Fear is no excuse for insensitivity.

After this lovely conversation, I was collected by the same woman who did my initial ultrasound. She remembered me, and that I had been in exactly a month before. She asked me about my baby and my vacation. Either she has a great memory, or us youngins really stay in their minds. I went in for the ultrasound so they could locate the tumors again. This woman is a very good radiologist. It was a fast procedure, and it ended with more Sharpie: this time, black circles to mark my tumors. The whole time I was feeling really emotional, weak, and it was hard not to cry. I didn't expect to feel that way. I kept thinking about my lymph nodes. When she finished, she asked me if I was all right. All I could do is shrug. Not really, you know?

The doctor came in to put in my wire, or in my case, wires. At first she planned to put in three since I had three tumors, but she was able to do two, by threading one through two tumors. She injected me with lidocaine, which definitely hurts (again, an injection in your breast is PAINFUL, and mine are small and I have no extra fat to shield me--ugh). But you're fine with that pain, because when you had your previous biopsy and there was a 14 inch needle involved, you were glad you would only feel the sting from the anesthetic and not that monster. This time, the needle contained a wire that was thread into each tumor. They leave the wire in you, sticking out. So now my breast was covered in marker and there were wires sticking out of me. It has been over a month since I've felt that there was anything remotely attractive or sexual about my breasts, and this did not help. Breast cancer can make you feel like an alien. Marked up, wires and ports in your body, eventually bald, it's like a bad sci-fi movie.

Wires placed, I needed another mammogram. My excellent radiologist did that as well, and it only took a few pictures for her to get it right. She looked at me and said, well, this will be a trick. Yes, I know, us 34bs are hard to mammogram. You have to grab the breast, contort my whole body, and do some superwoman trick just to get in in there. She knew what she was doing though. When she finished, I was in a wheelchair sitting in the hallway waiting for Gabe. I was crying silently, already tired and overwhelmed and my actual surgery hadn't even started.

By around 11 am my fourth procedure was done and I finally went into the pre-op room. My conversations with the nurses and anesthesiologists about past medical history was longer than usual (4 past surgeries, epilepsy, toxic reaction to medication, medical allergies, car accident, etc.) and they kept telling me "huh, that's a lot." Well yes, but now that has all been trumped by CANCER. The nurse who placed my IV was again excellent. I've always had issues with that, and when Augie was born it took five tries and four people, including a specialist, to place an IV for me. When this woman just put it in like it was nothing, Gabe almost had a heart attack. He asked for her name and kept praising her to everyone who would listen. Other than that, I of course don't remember the lumpectomy or sentinel node biopsy since I was under general anesthesia, intubated, and as I described yesterday, totally out of it. What I do remember is thinking that they should have a counselor waiting there for you when you wake up, because there has to be a better way to learn your cancer has spread than to wake up alone and feel that damn drain. I had asked if my husband would be told about the nodes, and they said yes, but it didn't occur to me that he wouldn't be there to break the news--I would find out all by myself, just by touching my chest. What I found out was good news, but so much of the way they do this just seems like torture to me.

I found out later that Gabe and my brother were wondering where I was for a long time after surgery. My surgery was over before 1 pm and the surgeon came out to tell them how it went, that the lymph nodes were clear, etc. They expected to see me soon. But after I woke up, after having the conversations with the nurse about my nodes and stage, I told her I was in a lot of pain. I have a very high tolerance for pain, and in the throes of back labor with my deliveries or with both hips broken, I usually said I was a six on the 1-10 scale of pain. That scale is stupid. I figure you can only be a 10 if you are at death's door, or if you are a burn victim. Burn victims get 10, so after this lumpectomy I said I was an 8. That is a lot of pain for me. She gave me more pain medication in my IV, which made me nauseous, and then the anti-nausea medication knocked me on my ass again, and this whole vicious cycle began which kept me away from my family for a while.

So there's the lumpectomy story: six procedures. Node mapping, ultrasound, wire placement, mammogram, lumpectomy and sentinel node biopsy. For women with positive nodes, they get a seventh procedure with the axillary dissection. Next Thursday I will have my post-op appointment and my official pathology will be available. If I don't have "clear margins" I might have to do all this again. That's not going to happen, right? I could also theoretically be upgraded to stage 2, but that's not going to happen either damnit!

In the meantime, this thing HURTS. Not just a little, not some dull ache. I'm talking searing pain. I can't take the real painkillers. They gave me darvocet and my vision got blurry. I started looking at the side effect list and I saw in huge letters "CONTACT YOUR DOCTOR IMMEDIATELY IF YOU EXPERIENCE VISION CHANGES WITH THIS MEDICINE." OK, never mind then. When I had codeine after my wisdom teeth were removed, I hallucinated, and not in a good way. I couldn't remember who I was or where I lived. This is why I don't do drugs. I think they would kill me before I could ever enjoy them.

So I'm hanging out with some extra strength tylenol and trying not to think about this wound on my chest, sitting right on my muscle, making it hard to lift my arm or put it down at my side so my arm is kind of stuck out half-sideways. I'm bruised and swollen on that side about a cup size, and the gauze is stuck to the inside of my wound where the stitch is, so now it actually looks like there's something wrong with me. At least you can tell when I'm naked, which I haven't been until today when I could finally take a shower and take stock of the situation. Not pretty. But, it makes me realize how glad I am that I didn't have to have a mastectomy. I feel alien enough. Like they said to me, that's a lot! Yes, and it's only just begun, but at least part of it is thankfully over.