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 701: Dear Doctor

It's official. Hell has frozen over. I'm about to write a letter of (probably half-assed) apology to my oncologist for some of the not so nice thoughts I've had about him over the years. Emphasis on the SOME. Other things I would say again, right now, if he called me on the phone. But I'm a big girl, and I can admit when my perspective changes, so here goes:

Dear Doctor:

I was very interested to read this article in Reuters today that suggests that you were actually right about things you said to me while I was in the middle of cancer treatment, even though they seemed so wrong at the time. When I was first diagnosed with breast cancer, I was in such a state of shock and ignorance that doctors could have told me that I needed to slice my ear off to cure it and I probably would have believed it--if only for a second, before I got as bitchy as you know I can be and started to argue the point in some kind of crazed voice. Before I met you, I understood that my experience with breast cancer was different from most of the other women I had met who had the disease. I fell into this weird "triple negative" category. I had multiple tumors. I was not only not post-menopausal, I was nursing, for God's sake.

So things would be different for me, I learned. I would not get an MRI, because there would be a "100% chance of false positives" due to the fact that I was lactating. After a bunch of ultrasounds and mammograms, including that sci-fi 3-D ultrasound, I was offered only one test: a chest xray, to see if cancer had metasticized to my lungs. I had no other scans of any kind. Because I was triple negative, presenting at 0% for all hormone receptors, there was no additional testing to classify my tumors. I did do BRCA analysis, because everyone assumed that a young, triple negative breast cancer patient would be BRCA positive. Everyone was wrong. Remember that?

This seemed strange to me. Don't I need to find out if cancer has spread? I asked. I really didn't get any answers. This looks like early stage breast cancer, I was told. Probably stage two. When I had surgery and my lymph nodes came back negative for cancer, I was downgraded to stage one, regardless of the existence of three cancerous tumors. After a second, probably unnecessary, surgery, I met you and started to make my plan for chemo.

And you didn't give me a whole hell of a lot to go on. You are stage one, and that is great news, you told me. Your cancer is very unlikely to have metasticized, but we need to make sure it won't in the future. There are no maintenance therapies for you so you have to do chemo. You told me that there were no material differences in the kinds of chemo I was offered (failing to mention the drastically different side effects, however). You offered me a clinical trial that included Avastin. When I challenged you on why I would be offered a clinical trial that was intended for late-stage breast cancer, for a drug that could bore holes in my lungs, intestines, and spleen, you said this: "Because you have a tumor of greater than 1 cm, you are eligible. Everyone in that case is eligible. We like to see people enroll in trials because that is how we do research. You are under no obligation to do it. It does not increase chance of survival in your case. These are all good therapies for you."

OK, Doc, no thanks, I thought. I didn't realize then that my honesty in thinking the whole trial was insane begot your honesty in telling me why you offered it to me. I didn't realize then why you looked at me so strangely when I rattled off all of the side effects I wanted to avoid by not taking Avastin. Jesus Christ, you must have been thinking. I gave this girl a 60-page document full of medical-speak on a clinical trial and SHE READ THE WHOLE DAMN THING. I should have seen that look in your eye that said, well ok. Here we go.

And then we started dancing, you and I. It was not a mating dance, but a dance of war. You had an unbelievably obnoxious way of seeming to deny everything that was happening to me when I started chemo. Most people don't lose weight on this regimen, you said. Morbid insomnia? I've never heard of a patient not sleeping at all for five nights. You are still vomiting? Impossible. Bone pain ten minutes after your neulasta injection? How strange. And then, your favorite turn, your favorite move:

"You look great."

Don't even get me started, doc. I'm bald, and I only weigh 110 pounds, and I am so weak I can't feed my baby his food with a spoon because my hands shake too much. Granted, I was somehow still going to the gym when I could and walking every day. But no matter. I started to self-diagnose, took myself off of almost all of the side effect meds (thanks for offering me that anti-psychotic medication to treat my....nausea?), and started acupuncture. I stayed with you because I heard you were one of the best, and because I loved your chemo nurse. Her bedside manner was almost opposite of yours, and she scoffed at the very notion that I should get a port if I didn't want one. She was patient, and she never blamed me. She agreed that I am some kind of freak who reacts badly to all drugs, telling me at one point "when you finish with cancer, don't ever take any medication. ever! for the rest of your life."

So I stayed. I stayed through continued denials about what was happening to me, allergic reactions, menopause, all of it. Maybe now I have some sense of why.

I made it through. You told me, "now you are done with chemo. You and I can just have, you know, social visits."

What was that? A hint of humor? Of humanity? Admitting that you knew I wanted to strangle you?

Every three months I've gone back to you. And here's the thing: Our visits are mostly, well...social. You talk to me, ask me questions, take off my gown, feel my breasts and push my body onto the table so you can feel some more.

You don't give me any blood tests. Nothing to look for tumor markers. No MUGAs, not after that first one to see if I was eligible for AC chemo, even though I had a heart problem on taxol. When I was in active treatment you refused to give me bone scans, arguing that I should switch my forms of exercise (erging, spinning) or stop wearing heels. We're talking about cancer and you're giving me fashion advice? Asshole!

Many people have told me to switch oncologists on this fact alone. Most of the women I had talked to with breast cancer got blood tests the moment they walked in the oncologist's office, even if they didn't know why. Multiple MUGAs could be routine. PET scans, CT scans, the works. But not for me; my dance instructor believed in only the basics. Nothing but mammograms? How do you know if cancer has spread? other survivors would ask incredulously. Well, according to you, I would know. I would rest, and wear flats, and my back pain would just get worse. It would never stop. If I was short of breath all the time, well, maybe I had breast cancer in the lungs, or a heart condition brought on by chemo. Headaches that don't go away with aspirin? For days at a time? Extreme fatigue? OK, maybe there's a problem. You always told me this: "I don't offer you tests and scans because you don't need them."

And here's where you made a mistake. All you needed to do was tell me WHY I didn't need them:

If I had metastatic breast cancer, knowing it now when I was asymptomatic, as opposed to knowing it in six months when symptoms appeared, wouldn't make any damn difference. My prognosis would be the same. You didn't tell me this. You didn't tell me that because I was triple negative, it was unlikely for my cancer to metasticize to the bone, like most breast cancers are known to do. Triple negatives usually attack the soft tissues, bypassing the bones and going to the brain, liver, or lungs.

And no matter what kind of screening I would do for that, I would not live very long if I had metastatic triple negative breast cancer to the brain.

And, further, I would have those months of my life back. You always tell me "enjoy the holidays" or "enjoy the summer," and now I understand. You ask about symptoms, and when I don't have any, you are pleased, and you assume my cancer has been held at bay. Why put me through more tests, more fear, more agony of wondering and waiting, if there will be no material difference in outcome?

Now I understand. But you should have told me. I am a very smart person. I am a grownup. It's my life, and my potential death, and you should have told me for this reason:

Because I asked you. I asked you over and over again. Some people don't want to know the truth, and I get that. Some women need the peace of mind that a clean scan or a good blood test can provide. Maybe most women need that. And you, you are a stubborn son of a gun and you don't believe in doing medicine for the sake of peace of mind, and you assumed I was like everyone else, so you didn't tell me.

Here's the kind of person I am: I don't want to do a mammogram right before a major event. Many people like to schedule such tests before holidays, for example, so they can get the good news and enjoy themselves. Not me. I see bad news lurking behind every corner. I want to enjoy what I can, then do what I have to do, and if the news is bad, well damnit at least I enjoyed Halloween, or Easter, or whatever.

I don't have a general problem with regular testing. I did it all my life. I had epilepsy, remember that from my chart? Every six weeks I had to do blood tests to see if my medication was poisoning my liver (it was, but not too badly, so I had to stay on it). I had to do regular EEGs to see if my seizures were declining or changing (they stopped on medication). These tests made sense to me even at six years old. I understood why they were necessary: dosage might need to change, medication might need to be stopped and swapped with something else, they might need to do something else entirely if medication didn't work.

So I get it. But it's not the same with early stage breast cancer, is it? You just have to hope that it went away, that early is what you had, and that it doesn't change on you. You just have to hope, and fear, in ways that other people cannot understand. And now I can see it. I felt wonderful when I found out I had breast cancer. I was so healthy, and vital, and alive. I had cancer for years, I learned.

I'm glad I had those years, wherein I gave birth to two beautiful children, and that I didn't know I had cancer.

I don't want my daughter to start getting mammograms at age 24 just because she is unlucky enough to have me, a young breast cancer survivor, as her mother. Who has children at age 24 anymore? Here's the thing. Lenny is built exactly like me. I can already see it. She's 6 and weighs 34 pounds. She and I have the same BMI of around 19. She's all legs, small feet, will have my small frame, and probably my small breasts.

And if she ever had breast cancer, she would know.

I felt it even though I was lactating and the odds were completely stacked against me to feel it. I have no fat in my breasts, just breast tissue, and, at the time, milk. My ob told me "you felt that thing as soon as it was palpable. I don't know how you did it but you saved your own life."

For the love of God don't take my daughter's sanity, fertility, and youth from her by making her do tests that will not cure her of a cancer that is either there or isn't there. Mammography doesn't cure a damn thing. But if something is found, it changes your life forever. And at age 24, I want her to have those years.

Of course, my daughter will never have breast cancer. If I have anything to say about it she will stay skinny, and never go on the pill, and unlike other parents who might struggle with their kids having kids at young ages, I'm hoping that Lenny has kids way before 30 if she chooses to have them at all. I can't let my mind go there.

Because it was all so awful, chemo especially. It was all so hard. It still is. There is a feeling of isolation that follows me like a cloud, a point at which I can't relate to women my age. I can't even relate to myself sometimes when I feel that I am having more pedestrian problems. I lost friends, and I lost some aspects of myself, but I am going to tell you this:

I would do it again.

I never thought I would say that, but I would do it again.

Because now I can see myself the way you did. I can see myself bald, and skinny, and exhausted, and ranting, and furious when you looked at me and deadpanned "You look great."

Because, after all, I was yelling in your face. Screaming, using big words, gesturing grandly in your office, about to start a fight. I was reading all the shit you gave me, exercising, raising my kids, going to work, having sex with my husband, refusing your advice on what medicines to take and just generally being a royal pain in your ass.

I was so...alive, wasn't I? I was still...me.

You could see it, and I couldn't. Just like when I saw this picture of me in a bikini, and I thought ugh, I look awful, I have no business putting a picture of myself wearing that online. I thought it would be good to follow up on my last blog, since I don't think I look like any kind of athlete in any way, and I thought it was funny to point out that all of my radiation tattoos are visible but I've stopped caring. While I was complaining about how I looked Gabe said, shut up Katy. How could you look fat in a size 2 bikini?

He could see it, and I couldn't. He could see me in a way that I couldn't see myself. So it was with you. I couldn't imagine looking like this now, considering what I looked like then. I couldn't imagine the future at all. And I thank you for sparing me the extra tests and the hand-wringing.

Now don't get me wrong. I never, ever in my life want to go have a beer with you. I think you need some serious help in the people-skills department.

But your cancer-fighting skills were apparently on point.

Till our next social visit Doc. Till then.

--Katy

Day 443: Couldn't Stand the Weather

As I was contemplating whether or not to write a blog today, I thought I really had nothing to say. There's not much going on on the cancer front, thankfully, and yet the front has not disappeared. It's become a part of the routine, something I don't even think is worth mentioning much of the time. So, ultimately, I decided to write about that. It's not such a normal thing for cancer to be normal, I suppose.

I had my three month checkup at the oncologist's office this week. I don't bother to ask Gabe to go with me to these appointments, as no mammogram is involved. After taking a cab there from the train station, I waited around for an hour, pissed off that they have not a single magazine to read that isn't related to cancer (seriously!!) in the huge waiting room. My restaurant-style pager looked at me silently after I finished reading the paper. I went to the bathroom, did work email on my iphone, felt doomed to spend the rest of the morning in the damn place. When the nurse finally came to get me, the most interesting thing I learned is that I've gained two pounds since the last visit (oops) and all my vital signs are totally normal. Then the doc came in, which surprised me. He usually sends his P.A. first. He shook my hand, attempted a smile, asked me how I was taking the heat (it's been 100 degrees and humid in Chicago--here's me sweaty and fussy but trying to play it off in a bright red dress anyway). I almost felt for him--the small talk doesn't seem to flow easily.

Now, most breast cancer survivors get a bunch of tests during these visits, or so I've heard. Blood tests to check for...what, I'm not sure. Me, I get nothing. I asked about this--do I need any blood tests? No. (He's the king of monosyllabic answers). Um, ok. I never had a follow-up MUGA for my heart either. Do I need one? No. Well then, ok.

He took my arms and felt them, held my wrists, looking for changes in size that could signal lymphedema. Then he took my arms out of the gown himself, which he always does, and started my breast exam. This used to creep me out, even anger me. Now that I'm past some of my vitriolic anger that I felt during chemo, I can actually see it as his way of trying to be gentle, or caring, or something. It was interesting to have a little bit of a different perspective.

While he was examining me, I told him something I had only told Gabe until that point. For the week prior, I had been kind of terrified of a hard spot in my left breast--the previously cancerous one.

I didn't call my surgeon because I knew I was going to the oncologist soon and I've been extremely busy at work due to my new job. I showed Gabe, who thought it felt like scar tissue. Now, I have a lot of that, but this was one spot just to the right of the scar that felt, well, scary. I had told Gabe that I couldn't imagine going back to that place, doing all of that again, losing my breast this time, my hair again, trying to find a chemo I could take when I exhausted my lifetime intake of adriamycin, and on and on. But I didn't feel like it was worth mentioning to anyone else.

It's the first time since that mastitis in February that I've been worried about something in my breast, even though I still have chronic pain all the time. I have pain when I lie on my left side, pain when Augie leans his head on my chest, pain if I try to lift the ten pound weight or do a single pushup. If I stop to think about it, it seems strange to still have that level of pain more than a year later, but I've just kind of folded it into my life.

A strange lump is not so easy to ignore or to fold in though. The doc said it didn't feel concerning to him, my mammogram not quite three months ago was normal, extreme scar tissue and chronic pain are also normal. He told me, as he always has, that I look good. I should enjoy the summer. The whole visit lasted less than ten minutes.

When I left I went to the "other side," the area of the 4th floor where they do chemo. I looked for my chemo nurse. A bunch of the other nurses and aides recognized me, which I found surprising. It's been nine months since I left that place for good. I waited a bit for the nurse, then decided to leave and saw her in one of the infusion rooms as I was walking out. I wasn't going to interrupt, but she saw me and yelled, hey you! look at you! She told the bald woman in the room that I was one of her old patients. Look at her hair! she said. Third haircut, I told her (I gave in and got another one today--mostly the back and sides, which I photographed in the oppressive heat--it's the pic with the striped shirt--and I can't decide if it's too short or not). The woman getting chemo got really excited and started talking about her peach fuzz that was coming in. The nurse left the room and we talked for a while, about my new house, how much she loved my hair, how it was less busy on a Tuesday than when I used to go in on Wednesday or Monday, how it all seemed like a bad dream.

It's not a bad dream though, it's a bad part of life that hasn't ended entirely, as evidenced by my pain, fear, and complete disinterest in visiting doctors if I can avoid it. After talking to the nurse, I left and called Gabe to give him the news. We talked as I was waiting for Zara to open so I could go on a brief shopping spree, the reward that I often give myself after doing my cancer business. Maybe Northwestern is smart to sit itself in the Mag mile, where sick people, cancer survivors, and women who have just learned they're not yet in labor can go for some retail therapy. Anyway, he wanted to know why I didn't demand more tests, wanted to know when I was going to get a MUGA. I gave him the reasons that I know the docs have: I don't have cancer symptoms, I had clean scans, MUGAs are lots of radiation, there is no reason to believe my blood counts would be abnormal.

The real reason is that I'm sick and tired of going to the doctor, going to the hospital. I have spent an inordinate amount of time in such places in my life, ever since I was a child. I want to avoid thinking about cancer, to the point where I had to admit to the doc that I don't even take a multivitamin anymore, no Vitamin D or anything. I asked him about my strange cycles and he said since I had my period, I wasn't in menopause (right--thanks) but it was impossible to tell if I would go into it soon. I don't need calcium supplements yet, I learned. Huh, once those hot flashes stopped and I got my sex drive back, I stopped caring about any other side effects of menopause. I feel normal, would like to be normal, thank you. Normal people take vitamins. I take one and it reminds me that I used to be in menopause, that Vitamin D is thought to have some small positive effect on breast cancer, and wow, I had breast cancer, didn't I?

The bottom line is, I want to go out for a cheeseburger, buy a new skirt, sit here on my couch while the rest of the family sleeps and watch Iron Man on t.v. I want to go swimming, bitch about the heat, read a pointless book. I want to dream of winter as I look at this photo of Lenny with her picture of "Santa McMillin" (her name for her Santa doll--don't ask me why, I have no idea). God help me if I need to put any more needles in my arm. I'm fine with never having another blood test, not having to ever remind another nurse not to stick me or take blood pressure on the left arm. I want to be angry at myself for weighing five pounds more than I'd like to because I'm a woman and women berate themselves about these things. I don't want to worry about it due to my triple-negative status and the fact that being skinny is my most notable defense.

It's hot, it's hard to exercise much in the humidity, and I've actually been meeting other adults for lunch, actually been drinking a beer with my husband after work sometimes. Thus the few pounds. I've been normal, but it makes me think that maybe I shouldn't be, not yet. I'm making myself ignore my breast for a while, I'm trying to just enjoy the summer, hellish as this weather is. It's not that hard, as I watch the kids running naked through the yard, spraying each other with the hose, having their first slurpees, helping me gather sticks. It's a strange summer, but it's a summer all the same, while last July marked the third month in what was just some poor excuse for a season in all of our lives.

Well I guess I had something to say after all. Now back to watching an evil Jeff Bridges. Can I help it that while I laugh at him yelling "Tony Stark built this in a cave!" I secretly wonder who bic'd his head? Nope, can't help it. Next scene. Moving on.