Thursday, July 26, 2012

Day 813: Don't Think Twice, it's All Right

So I think I'm going to be OK.

How is that for an understated, casual opening line?

I mean, I don't have a heart condition. And, I don't think I have lung mets.

Can I get an AMEN?

Those issues I was having literally scared the shit out of me. It was not in my mind, and now I think I have an inkling of an understanding of what was really happening--but I'll get to that later. When my blood pressure shot up to 143/80, I was convinced my heart was having trouble. And no, it's not because I'm a hypochondriac. It's because I had radiation over my heart AFTER taking this heart-terrorizing medication affectionately known as either the Red Devil or the Red Death, because while it looks like cherry Koolaid in that syringe, when they push adriamicin into your body, you literally feel the coldness of something approaching death course through your veins, and the nurse looks at you to make sure you're still breathing, and then they do that shit to you again and again. So, you know, I wasn't nuts for worrying.

But when I saw that blood pressure reading, I said, screw this. If they want to put me on those damn beta blockers again I'm not doing it. I hated those. So I made a bunch of changes to my already healthy lifestyle. I love coffee, but I don't drink very much. At home I make it half-decaf and I pour it out as soon as it gets lukewarm. A few days a week I was going to starbucks for iced coffee, no sugar or milk, and since that's mostly ice, it didn't seem like a big deal. I was having one drink every night to help me relax. While we were up north, I was making "up north dinner," or crockpot dinners that could last us three nights and not necessitate going to the grocery store, which was really far away. Things like vegetarian chili made with canned beans. Chicken-rice stew/soup made with those packaged rice things. Homemade pizza. I don't eat a lot, but I do eat like a real person. I'm no "salad's enough for me" girl.

This crap was terrifying me so I just stopped. Cut out caffeine, stopped drinking, started looking closely at sodium content and getting annoyed at how much sodium there is in everything. Even if you give up bread, it's bad. How do low carb folks do it? Dairy products are the WORST with sodium. For a while I was overdoing it and basically eating fruit for dinner, spinach salad for lunch at work. I continued my same workout routine. I was HUNGRY.

And I felt better. I scheduled an acupuncture appointment for the first time in a year and a half, and that made me feel even better. My last memories of acupuncture are positive, but I was never truly comfortable when I was doing it. The first time, I was just suffering terribly from chemo. Even when I was done with treatment, I was in menopause, having hot flashes while lying on the table with needles sticking up out of my translucent newly-grown hair. My scar tissue pain made it difficult to lie comfortably. I always stayed for the minimum 25 minutes and got out of there. She expected me to do the same this time. When she came to get me, I sent her away. I am lying here with nothing to do and nothing to think about and I'M NOT LEAVING! She laughed at me, gave me as long as I wanted. I am naturally restless, so I made it about 45 minutes--a record.

I went in for the heart tests on Monday. It was 100 degrees and due to the scheduling, I needed to take the whole day off of work for the appointments, so I drove down to the hospital. The ecchocardiogram was painless, and relatively interesting. I had one done when I was admitted to the hospital for heart problems due to Taxol but that whole weekend was so difficult I don't remember much of what the tests were like--even though I will never forget the kindness of that one doctor. An eccho is basically an ultrasound of your heart. The technician showed me everything--this is your pulmonary artery, that sound you are hearing is the blood pumping, those colors mark different arteries. It looked and sounded just like those early ultrasounds you see of your fetus in the womb. I asked if she could give me results, and she said: "I can only tell you if something life threatening shows up, that would make me concerned you were about to have heart failure. Barring that, the physician needs to read it."

She sent me on my way. I went to get the Holter monitor. That was fast--leads and wires taped all over my torso after she literally used pumice on my skin to rub it raw and make sure they would stick. I had this bulging monitor on, tape up to my chin, and I was wearing short shorts and a tanktop. Oh well, that's one of the benefits of living in a place like Chicago. You walk around the Mag Mile like that, going shopping, and the androgynous employees at Zara just look at you with utter boredom in their eyes, and people texting on their phones almost run you down because they are paying so little attention to anything outside of themselves, and no one gives a shit, because there are much stranger things happening.

And then, I waited.

Tuesday evening I got an email message from my general physician. Your Eccho is normal.

Late in the afternoon yesterday, prompted by my email asking her for results, I got another message: Your Holter results were normal, even during the one indicated time when you felt your heart racing.

I had been given a diary, wherein I was supposed to write my symptoms if I experienced them. Shortly after eating an Mburger for lunch around 1 pm, as I was STARVING, my heart started racing. I recorded it. I drove home, laid down, read a book about typhus destroying Napoleon's grand army in 1812 because that's the kind of thing that puts my issues into the grander perspective, and it was still racing.

Salt from the burger. Dehydration. My heart is fine--but there is something odd going on, and I think I now know what it is. I was thinking about this on Tuesday, when I finally got to take the tape and leads off around noon. I locked the door to my office, and thought I could just casually remove them. Wrong. It was like the smooth-chested female version of the 40 year old virgin up in here. Taking that shit off HURT. I still have red marks from it. I told Gabe he'd better keep his heart healthy so he never needs to have one of those monitors put on his hairy chest.


Water retention. In the eccho room, they took my blood pressure. Twice. It was 105/60. I was more nervous on Monday by a large margin than I was when my BP read high, so don't tell me that high reading was stress-related. I was also newly addicted to drinking water. For the 10 days or so that I've been on this experiment, my weight has not fluctuated much. I weighed 116.5 this morning. At night, I usually weigh about 118. When I was having the heart and breathing issues, I would sometimes weigh as much as 121 and I would complain about how fat I felt, how bloated I was. We make light of these issues as a society, even our husbands roll their eyes at us. We fail to recognize that what presents as vanity might actually be a real, honest to God PROBLEM. And like so many things, we trivialize it, sweep it under the rug, focus on the wrong thing--the "fat" days, when there's water pressing on your heart and lungs, the tits, when there's cancer trying to kill you. Well, no more. Some of us breast cancer ladies are getting testy enough to make our OWN shirts. Save second base? Really?

Water retention. In an extreme form. Water retention so bad, it put pressure on my heart and made it hard to breathe. Water retention that was worse at certain points in my cycle, but never absent. Yes, I realize that I'm self-diagnosing. But until I keel over, I'm going to make the unheard of assumption that I understand my body, perhaps better than anyone else. And my body has changed. The thing is, when your body changes drastically AFTER having some minor issues like CANCER, it can be hard to correctly place the problem and not sit around thinking about what your kids will look like when they're grown up and you're dead. Just saying.

Yesterday, I got myself an iced coffee for the first time in almost 2 weeks because it was so damn hot even at 5:30 in the morning while I was taking my walk. I drank two thirds of it but it took me a few hours. I got up from my desk to go to the bathroom, and I had one of these surreal post-cancer moments. I sat there--me, of the iron bladder, the woman who used to be able, even AFTER having kids, to go 7 hours without using the bathroom--for what must have been three full minutes, peeing. I mean seriously. Folks who came in after me were leaving and I was still taking a piss. My body was telling me, look lady, you're retaining too much of this shit. There's one more vice you just can't have.

Goddamn chemo-induced menopause leading me into a second puberty bullshit.

I got my first period at age 11. I went on the pill at age 18 and went off at age 29. I had my first child at 30 and my second at 33. I never, at any stage, had PMS symptoms. Heavy bleeding, vomiting, yeah I had that. But bloating? Depression? NEVER. And now I have days of the month where I get so down I literally feel almost worthless. I think, I am going to lose my job because I'm no good at it. My kids hate me. I don't have any friends. WHOA! KatydidNOT ever feel that way before these hormones blew up. Never.

Until now.

If I was 20, I wouldn't think about it. At my age, it's hard to believe my hormones could take me for this kind of ride. But there it is. I've been feeling like a rockstar at spinning, still a little out of breath, but better. And it's been 9 million degrees in Chicago and the air quality is horrible so that's not a huge shock. But here's the thing.

If you have lung mets, your symptoms don't get better. They might start out mild or barely noticeable and stay that way, but they don't get BETTER.

So screw that chest x-ray man. Just give me 47 bottles of water and I'm good.

Not just good but GREAT. I feel skinnier, more like myself. I won't throw out the order, but come September, I just don't think I'm doing the chest xray. Now, some of you will think I should get the xray anyway. Other survivors have said, now if it was ME and I had a chest xray order I couldn't get there fast enough! But you know what? I've had more radiation than any human being should ever have in her life and I don't need any more just in case radiation, any more my God I'm going out of my mind until I get those results, tests. I mean, I feel pretty damn good.

Last night it was 103 degrees and extremely humid at 6 pm. So of course, while the kids were at gymnastics, I went spinning. And I felt awesome. I drank two bottles of water in 45 minutes. I had to pee the second I got off the bike. BUT. The last song, during the stretch, was Purple Rain. And there I was AGAIN, tearing up in the gym, this time with happiness, passing it off as sweat as I realized that my heart is ok, my lungs are probably ok, there's something going on in my chest that might necessitate an xray, since it hurts so much, is so tender that if Gabe tries to touch that breast tears sometimes come to my eyes and if I push on the left side of my sternum I wince, but THAT IS NOT CANCER. Ruined pec or cracked bones from radiation, maybe.

But it's not cancer. Cancer doesn't present like that.

So there I was, flying on the bike in the sweaty gym, wearing a bright blue bandana on my head that I bought at the wig shop when I had my head shaved two years ago. Suddenly I had this image of myself when I was 25, wearing this mod dress, showing up at night at class in graudate school after I got off of a full day's work. Another student told me I reminded him of Mary Tyler Moore. I thanked him, though that hadn't been my goal.

Maybe it should have been. I lived in Minnesota for years. And you know what?

I think I'm gonna make it after all.

Sunday, July 22, 2012

Day 809: Walking Wounded

I was reading some story somewhere that used this phrase recently. Whoever coined that term was a genius. What an apt description! To explain how it is possible to be dealing with something painful or traumatic, disfiguring or paralyzing, and that no one who sees you would ever know.

I don't intend to make some comparisons between myself, and my issues with cancer, or epilepsy, or anything else, and battle wounds, if only because I hate the idea of my body being a warzone. After all, I am not the enemy. Further, comparisons of any kind usually fall short, don't they? Take, for example, the concept of making difficult choices. As I deal with this heart issue, I have been silently berating myself for "choosing" adriamicin/cytoxan/taxol chemo rather than taxotere and cytoxan. What if I made the wrong choice? What have I done to myself?

Luckily, this whole trip hasn't changed me that much, so I get it together pretty quickly in those situations and remind myself of what a choice really is. What job to take? Which man to date? Should I grow my hair out or not? Those are choices. Life looks different depending on what you choose, but there's no comparison between those things and the choice of what lethal poison to inject into your body so that you hopefully won't die young of an aggressive form of cancer.

It's just not the same, right?

And my worries about the tests I will do tomorrow, and the ones I will not do, are not the same as other people's worries. Yes, I know it could be stress. Or dehydration. Or allergies. But, I also know that it could be lung mets, or a heart condition. I know those things because my body is walking wounded in a way that many people's are not. There is no such thing as hypochondria in the years subsequent to a cancer diagnosis. We've been on the side of hope that it would be nothing, and lost.

That's not really what I want to talk about today, though. I've been thinking about our desire, our collective and hungry desire, to frame "winning" as the ability to do amazing things with our bodies, to prove to ourselves that our minds and our wills are stronger than our bodies' conditions. Our need to believe that youth and health and vitality are what makes us whole, what makes us worthwhile.

I could TELL myself that my liver isn't dangerously enlarged from all the toxic anti-convulsant medications I took as a child. I could ignore the fact that I can't do high impact sports anymore, or jump rope for very long, because my hips were severely broken in multiple places and those breaks never healed. I could deny cancer, the chronic pain or burned pec or high risk for secondary cancer or the potential for heart trouble. I could, but why would I? My body is injured, it's imperfect, it's diseased in some places, parts of it are broken and will never be the same.

But it's my body, and it's amazing, and what I am right now with these imperfections, including the ones I don't want to find out about tomorrow or in a few months or whenever, is good enough. And good enough IS good enough. What is there left to prove?

Walking wounded. I hear this phrase, and images pop into my mind. Photographs, things that have stuck with me for decades, that have shaped me.

A Life magazine shot of a little boy on a skateboard somewhere in the suburbs. He had half of a body--only a torso, head and arms. It's entirely possible he had no penis, no rectum, that the bottom of his body was just a mess of tubes. But he's wearing a shirt tied over the stump of his body and you can't tell, and he's looking somewhat bored as the camera takes a picture of him, probably wondering if the kids with full bodies have photographers following them around while they're riding to the park.

A newspaper series in the Chicago Tribune a long long time ago, profiling a 12 year old girl who was in an awful fire. She had no hair, no lips, hardly any nose, no eyebrows, no eyelashes, her skin looked like rubber and her face looked like a mask. She was riding a school bus, sitting by herself with a pissed off look on her face. No one would sit with her. She got in fights a lot. I told my mother she seemed like a really angry person. She told me, maybe, but why shouldn't she be? And maybe it's not anger, but defiance. Think of how she must be treated. Think of how it must be to get on that bus, no wig, no prosthetics, and demand your education. Maybe if she wasn't angry, she wouldn't have made it.

And then, a filmstrip. Folks my age remember those. We used to have these days in grade school when the whole school would gather to watch a film in the auditorium. Sometimes they were topical--stranger danger, things like that. But I also remember how every year they had us watch Free to Be You And Me, that amazing 1970s take on gender and racial equality that kids today would probably find ridiculous (though my kids love it) because they don't realize how important it is. We also watched the Red Balloon. I think that was the name--a silent French film about a boy and his balloon. They never told us why we watched that one.

Another film, the one I'm thinking of now, was a snapshot of a family. A suburban family, husband, wife, two kids, maybe a dog--I don't remember. The camera followed the mom, who stayed home with the kids, as she drove them to school, went grocery shopping, made dinner. Sounds thrilling, right? Well, it was fascinating. Because she did all of those things--without any arms. She had been born without arms, just stumps at the shoulders.

She used some contraption that allowed her to steer the car with her chin. She picked up melons by balancing them between her chin and her shoulder and dropping them into the cart. She cut up vegetables by placing the knife between her toes and using her amazing flexibility to rest her foot on the counter--the pre-ADA, regular height counter--and slicing.

I'm sure the message was supposed to be about inspiration, and accepting difference, and feeling lucky. But what I really remember was this. The father was in the background, behaving like a typical 1970s father, I suppose. He read the paper and had a drink while his wife made dinner. He ignored his kids. He sat there silently, and I don't remember the film focusing on him at all. But I kept thinking about him, wondering how they met, how they altered things in intimate moments, how he must have sat there shrugging his shoulders while she wielded the butcher knife between her toes, this woman, this walking wounded, who could seemingly do anything, except of course, not some things, including the fact that she could never have arms.

Damn,I remember thinking. Someone should make a movie about HIM.

Monday, July 16, 2012

Day 803: An Ode to Anyway

Wow, that title throws me. It's been more than 800 days since I was diagnosed with breast cancer. Looking at it from that vantage point, it seems like 800 days is nothing. The time has flown. It has crawled. I've wanted to stop time, slow it down, speed it up, just generally do impossible things in the space-time continuum, for a variety of reasons. Time, and the things we do with it, has been important, and it has been irrelevant. Days and milestones come and go.

I guess I should have written a blog at 800 days. Or, when it was the 2 year anniversary of starting chemo. But I didn't. I was occupied with other things. But I feel some urge to make up for those things, so here I am, writing a blog almost exactly two years after preemptively shaving my head before chemo took my hair away.

I don't have a lot to say about that experience that I haven't already said. I wrote a blog the day I shaved my head, , the day I made Gabe bic it smooth for me, and last year on July 15, 2011, when the memory was raw enough for me to acknowledge the anniversary. There's nothing more for me to add about actually being bald.

I can say that I learned some things. I learned that in some ways, having an extremely distinguishing, highly-appreciated characteristic, such as beautiful long red curly hair, can be a crutch, a burden, and a gift all at the same time. It can prepare you for rudeness, for people staring at you and then looking away. You learn an early lesson, which is that people are weird, focusing so much on some dead shit you didn't do a damn thing to bring into the world. Having something like that teaches you the importance of real compliments. My mom always taught me to give compliments based on things people could control: their style, their personality, their skills. Never give a compliment based on looks. People don't choose their DNA. I can't say I entirely agree with that; but I remember how uncomfotable it felt to have strangers (mostly white folks, I will admit) tell me I had a beautifully shaped head, and how satisfying it felt to have strangers (mostly black folks) tell me things like "that haircut looks good on you" and "I like your style" when I was walking down the street or standing in checkout lines while completely, utterly bald.

I mean, I didn't choose to be bald. It was horrible to shave off all of my pretty hair. But, in the end, I chose to walk around the streets of Chicago like that, like it was nothing. Once I was in the throes of chemo, I could have made a different choice, and it would have been fine if I had. But I will always remember getting those nods of appreciation for a decision I made. And the memory will feel something like pride.

I will always live in the house I built, the one where my three year old son sees a picture of us both bald, and when I ask, hey don't we look alike? he acts confused and says no, in that picture I'm a baby. You're a mommy. Yeah, but we're both bald, I remind him. What's bald? When you don't have any hair. Oh, ok.

Like that's nothing.

Because, you know, it is.

Don't ever tell a cancer patient it's just hair. Because it's not.

But it is. And one day, they will see it that way, and they will have earned that statement in a way that you haven't.

Hair, and breasts, and walking around without pain, and having normal toenails, and waking up in the morning and never feeling surprised--in this house, that's nothing. That's not the important stuff.

I live in this house now, where my hair actually looks stylish but every once in a while my husband runs his fingers through it and I see a wistful look on his face.

Because he's remembering how much he loved to touch my head when it was bare.

I live in this house, where it's hard to catch my breath sometimes, and my heart races when I get up too quickly, but I go to the gym in the 100 degree heat anyway.

I live in this house, which was probably an idiotic thing for us to buy more than a year ago, right around the time when I wrote my most googled blog of all time, and I love it every day with an irrational love that's all tied up in hills and bookshelves and floors that are beautiful when we never expected them to be anything but ruined.

I live in this house now, and it's a different place than where I lived two years ago. I don't miss my old house, but I do pass by it every once in a while. Sometimes, I even go inside.

They say that true courage is not being unafraid, but rather being afraid, and doing things anyway. At many different points in my life, people have told me that I was courageous by this definition.

I don't intend to argue with such a real compliment. But I've learned some things. One is that courage is beside the point. There's nothing else to do but do things anyway. Sometimes you are afraid, and sometimes you are not. Sometimes you have hair, or legs that walk, or a highly-functioning heart, or lungs that take in air easily, or cells that follow the rules. And sometimes you don't.

Here's to doing stuff anyway.

(Including, incidentally, Twitter. Follow me @KatyDidTweet. It scares me, but I'm doing it).

Wednesday, July 11, 2012

Day 798: Wishing and Hoping

Here's my KatyDid update. It'll be short, albeit maybe not sweet. I still don't know what's wrong. My EKG was normal, and I just got bloodwork back; it's all normal. So, I am not anemic. I don't have a thyroid problem or a blood clot. According to the doctor's workup of me on Monday, I weigh 118 pounds. My pulse rate is 80, somewhat high for someone who does as much cardio as I do. My blood pressure was 142/80 when I got there--alarming. They had me breathe as deeply as I could, and then it lowered to 132/80--in normal range. However, that's not normal for me. At my oncologist's visit in May, for example, my BP was 110/70. So, I am going to cut out caffeine, make sure I'm still avoiding salt, and see if anything changes. I've always hated salt so that shouldn't be too hard--though damn, salt is in EVERYTHING.

My internist ordered an ecchocardiogram, 24 hour heart monitor, and chest xray for me. I will have the first two tests done on July 23. She agreed that both radiation and chemo could have caused heart issues. I do not have to schedule the chest xray; I have the order, so I can show up at the hospital whenever I want and have it done.

And I'm not going to do it. At least not until September.

You might find this to be odd, or disturbing. When I tell people this they inevitably ask, but if everything's fine, wouldn't you want to know?

Well, yes, I would think that way, if I was a healthy person.

Look, I am willing to pursue and accept heart problems. I am 36 years old, thin and active, and I am more than willing to accept a permanent heart condition. It doesn't scare me. When you say, there are a million things this could be, I am willing to accept 999,999 of those things.

The one I cannot face is lung mets.

This is not denial--it is really the opposite of denial. I was in denial when I had the first chest xray, at diagnosis. I couldn't do the MRI since I was lactating and the test would have been inaccurate, so they had to do something to check for mets in the chest. I was so overwhelmed I did whatever they asked me to do.

Not this time.

Here's the difference, compared to 2010. Did I want to know that I had breast cancer? Hell no. But if I hadn't found out that I had early stage breast cancer, if I hadn't treated it, it would ultimately have become late stage breast cancer. Finding out about my cancer early saved my life.

Finding out about metastatic triple negative breast cancer to my lungs would be a death sentence.

It's that simple. All metastatic breast cancer is incurable. Let me say that again. ALL METASTATIC BREAST CANCER IS INCURABLE. So don't tell me about Lance Armstrong. He had metastatic testicular cancer--which is curable. If I could have cancer of the balls, I would trade. Moreover, certain types of mets, such as bone mets, are much more treatable. Chemo and new alternative treatments can extend lifespans to years, though you're still in the incurable camp. Mets to soft tissues, especially the liver and lungs, are a whole different story.

Triple negative breast cancer, in the early stages, has been shown to react very strongly to chemo. That's why we TNBC girls get so much chemo--4-6 months, dose dense, multiple types, including taxanes, as opposed to 2-3 months for many other types of early stage cancer that require chemo. Many stage one breast cancers don't require chemo at all. Chemo has a decent record of resolving early stage TNBC. But.

Metastatic triple negative breast cancer is the most notoriously UNRESPONSIVE to ANY treatment. The reasons aren't clear, but in part, most treatments are developed for estrogen-positive cancer, so it's not clear what treatments would be best. TNBC is aggressive, especially if it metastasizes, and it moves fast--maybe twice as fast as hormone-receptive cancer. So while they give you treatment if you have metastatic TNBC, your odds of survival for even a few years are pretty horrible--especially with soft tissue mets.

So there it is. I am not being pessimistic. I am being realistic. Hopefully, I don't have lung mets (understatement of the century). But I don't want to find out until I have had the opportunity to enjoy my summer with my family. I don't want to find out until I've had the chance to turn 37 and go on one more north woods vacation.

And if the chest xray could tell me something else, like that I have a fissure in one of my ribs or in my sternum from radiation? Or that I have pneumonia? Well, if I get to the point where I can't walk or I pass out, it might be worth knowing that. Otherwise, I've already been living and exercising with this problem for a month. I can do it for a few more.

You might not understand this, you might think I've lost my mind. One thing I haven't lost through this strange trip is my mind. I never even had chemo brain. I know exactly what I'm doing. I'm working, playing with my kids, exercising for hours a day even when I feel terribly winded, loving my man, socializing with my friends, looking into this health issue as thoroughly as I can, stopping short of the one and only thing I am currently willing to accept, but not face.

If you understand what I'm saying, then I'm sorry that you have had to go through whatever you've gone through to get to that empathetic place. I'm sorry you went to have something checked out, assuming it would be fine, and you found out something different.

Here's to the summer.

Saturday, July 7, 2012

Day 794: Breathe

Take a deep breath. In through your nose, out through your mouth, relax, just breathe. Breathe like it's nothing. Like it's natural. Fill your lungs with that sweet clean north woods air, air that smells like AIR, not people or factories or car exhaust. Relax. Breathe.

That's really all I'm trying to do. But I can't.

I haven't had writers block these last eleven days. I have been avoiding this blog, superstitiously. I have said before that somehow it seems that because I write it here, it is real. That somehow these words bring my life to life. So, alternately, it seemed plausible to assume that if I didn't write something here, it would not be real. It would just exist in my mind, with all the other strange things that live there.

But I know that's not true. And I had to remind myself that I do this for me. I don't write a blog to blog or to build community in the cancer sisterhood or anything, even if I should. I do get satisfaction from knowing that people like my blogs, that some of them really seem to help other women with breast cancer, that my interview with my husband about his vasectomy is some funny shit that all kinds of men are reading because they're asking google how to shave their balls. But I do this, because this is what I do when the shit hits the fan. So that I can read it, and feel validated in my own thought process. So my kids can read it one day, if they ever need to understand.

For the last several weeks, it's been hard for me to breathe. My heart races all the time, or, if it isn't actually racing, it sure as hell feels like it is. I am not coughing, or wheezing, but it seems impossible to take a good, deep breath. I am still doing the same workout routines, spinning several days a week, going to the gym, strength training, taking walks. Spinning in particular, but even walking, makes me feel so out of breath that if I were a less stubborn person, I would stop.

I'm me, however, so I just keep going. Stubborn. Willful. Maybe a little crazy. What else is there to do?

It's been so hot in Chicago that I assumed that was it. Poor air quality and all of that. I even told myself that it was somehow related to my menstrual cycle. I have gained a few pounds--as in about three. Daily, I seem to gain and lose about two pounds or more in water weight. I feel bloated, then I pee a thousand times, and I'm lighter. When this kept happening even after my period came, I just blocked it out of my mind.

I'm going on vacation, I told myself. I'M GOING ON A GODDAMN VACATION.

And here I am, in the beautiful north woods of Wisconsin, where it's been hot, but not the record breaking heat of Chicago, and where the air is clean and I can walk and swim and paddle in the boat and the weather is beautiful and life should be so beautiful, but...I still can't breathe. Some days it's better. The other day, it was absolutely terrible. Gabe has said, maybe you're anemic. You get your period like every three weeks. My mom has said, you're exercising too much. She has suggested I go to the doctor. Gabe has suggested that I don't need to go.

I had absolutely no intention of going to any doctor about this. At least not until the end of the summer, because I want and need to enjoy this summer, which is not a lazy summer, since we both work and the kids go to daycare, but is a summer all the same. Unlike the one we were all stripped of two years ago.

And then, this Thursday happened, and I knew I had to do something. My heart! Racing, racing. So hard to take a deep breath. I lost it. I was crying, asking Gabe to take the kids away so they wouldn't see me, taking long breath-laboring walks by myself to avoid everyone. He tried to comfort me, but how could I be comforted?

I can't face the idea of having lung mets. I got to two years. This can't happen now.

Oh Kate, it's not that, it's something else.

How the fuck do you know that? If I had lung mets from triple negative breast cancer, I wouldn't live to see Augie reach kindergarten. Finding out about it now as opposed to two months from now wouldn't help me, wouldn't save me, wouldn't cure me, wouldn't make a goddamn difference.

Oh Kate, it's probably not that.

Remember the last few times I was told it was probably nothing? In September 2010 when I had heart palpitations and I thought it was no big deal but drove myself to the ER anyway and they didn't let me out for two days and put me on beta blockers because of what chemo did to me? Or how about in May 2010, when I was told I probably had mastitis or a clogged duct, but just go get it checked out, and then all this bullshit happened? Why, WHY wouldn't it be that? Why wouldn't I be on the shit end of the odds stick, like I've been so many times before?

And I was just crying, terrified, angry, beating on Gabe's chest, refusing to look him in the eye. Saying I'M TIRED! I want to know what it feels like to be you, to be healthy almost all the time, all your life, to be annoyed when your neck hurts after sleeping wrong! I've had what, two months? TWO FUCKING MONTHS! of feeling great, knowing my two years had come and gone, feeling that new lease on life. I've suddenly found myself the cancer mentor to two other women in their thirties, and here I am telling them look at me, this is a colossal pile of bullshit but it gets better, look at me! Are you fucking kidding me? LUNG METS NOW?

Then I started researching, remembering other things. Remembering that I took adriamicin, the chemo that gives at least 3% of the people who take it permanent heart damage. That on top of that I had left-chest radiation, radiation over my heart, that I know at least permanently injured my pec, and could have messed with my heart or lungs as well. Heart damage from adriamicin doesn't usually show up for years. It could be that, right? That happens.

And I felt relieved. Like oh shit, maybe it's just heart damage. That would be OK. I could deal with that.

Then, I realized that wasn't an altogether normal way to feel.

I called my internist and my oncologist yesterday from the north woods where our cell reception is terrible, so I had to wait in the house for their calls while Gabe played with the kids in the lake. I expected not to hear from them for a while. They both called back immediately. My internist wanted me to go to the ER. Where, I asked? I'm in the middle of nowhere. The nearest hospital is like two hours away. I do not have chest pain, not any more than I've had for two years at least. I'm not going. She seemed exasperated, but resigned. I have an appointment to see her on Monday. The oncologist's office called back right away too. The P.A. seemed a little less concerned--telling me that if I can still work out, if I'm not wheezing or clutching my chest, she's glad to hear it. Saying that I should be checked for "transient causes," such as thyroid issues, first. Take some labs, she said. Have your internist listen to your heart and lungs. If everything seems fine on paper, and you still have these problems, well, then we'll order some follow up tests.

I took the deepest breath I could and asked what I needed to ask: What's the chance of me having lung mets? At this point, she said, it would be odd. OK, what about heart damage from chemo and radiation? That's good, she said. You're thinking medically. That's not the most likely cause.

It would be odd. It would be unlikely. You're thinking medically.

In other words, it could definitely be that shit.

She asked me if I had any new stress in my life. I almost lost it on the phone.

Stress? You think this is stress?! Do you know how relieved I was to get that clean bill of health after two years, do you know what a weight was lifted off my shoulders? I felt like I could FLY. I felt SO HAPPY. If anything, I am less stressed than I have been in years. I even started to let myself drink again. She says, and that's fine. NO IT'S NOT, I replied. I gained a few pounds! I had to stop drinking even one beer a day, because I don't know what the hell is going on, and I'm not like normal people, and a few pounds from drinking beer on a hot summer night freaks me out, OK?

OK, she said. Take your labs. Then call me. Enjoy the rest of your vacation.

And you know what's funny? I have been. I am enjoying myself. I am laughing and eating and sitting in the sun and making love and singing along to the radio while driving fast and listening to the storms over the lake, and I am enjoying myself. But every once in a while, I also have some moments of terror and anger and sadness but really terror, that deep fear, and I cry, and then I go back to whatever I was doing after that moment has passed. Maybe you would like me to say, oh this is nothing, or I could beat that shit even if it was mets! Bring it on! I'm going to kick ass! But I am not going to say that. I am going to say that this is some terrifying bullshit and if it turns out to be something minor, not something that could kill me, I will not feel stupid for having felt this way, but I will, I absolutely will, go out and get completely plastered afterwards. Not in character for me, I know. But who gives a shit. Fear is one of the hardest things to deal with in life. Some people think fear is worse than actual suffering, but those people have probably not suffered much. So now, I wait.

And now I'm telling myself, hey, maybe it's the air conditioning. Years ago, when my grandmother was dying, we took a lot of long car trips to the hospital in our air conditioned Jetta. I got a terrible cough that I couldn't shake that summer. Eventually, I figured out that it was from having the AC blow on me all the time. So maybe that's it. Gabe thinks it could be the aerosol sunscreen I've been using. Or, he's still banking on anemia. I have finally broken down and told him that I've been anemic, I was anemic about six months after I got my first period, back when I was 12. I fell asleep in class in the middle of the day. I could hardly walk home from school. This is not that.

This is something else. This is the reason it is hard to be straddled with this moniker of "survivor," to hear the relief in everyone's voice when they ask how ARE you and you say fine, even if it's a lie. There's that guy standing behind me, the one with the gun, thinking about whether or not to pull the trigger, and I can't see him, and neither can you, but the thing is, he's not standing behind you. He's standing behind me.

When I was little, my mother had a nickname for me that I absolutely hated. She called me Kat. I acted like a brat when she used that name, refusing to respond, acting as if I didn't hear her talking to me. And now it seems apt, brilliant even. It makes me think of numbers.

1976, when I took penicillin and had a near-fatal allergic reaction
1984, when I was hit by a car and the fact of my life was touch and go for a few days
2000, when a young kid put a gun to my head while I was riding the green line
2010, when I was diagnosed with a rare and aggressive form of cancer
2012, when I found out...

what? What the hell am I going to find out? I want to know and I don't. I want to get the heart tests, but not the lung tests. I want to agree that it's nothing, it's no big deal. But I know it's not nothing. It could be something normal, something pedestrian, something that you or you could have, something related to my recent strep throat, something minor. It could be. But I have to face the fact that it could also be something else. I have to face that fact, even as everyone else can be Pollyannish about the whole mess.

This Kat has had four lives. Here's to hoping the other five last me at least 36 more years.

Take a deep breath. Cross your fingers, close your eyes. Take another deep breath. And another. Breathe. Relax. Keep going.