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.


  1. Katie, I'm praying for this to be something easily figured out ... I haven't had cancer but I'm recovering from some really hard health issues and I'm still going through the whole wtheck is wrong with me at least twice a week when facing odd symptoms. I hate to jump on the stress bandwagon but I do notice that everything is worse when I let the obsessive brain take over ... Keep enjoying the moments as they come and not a minute more into the day. Thinking of you.

  2. Oh sweetie. I hope it ends up being something easy to treat and if it isn't remember how strong you are and that you have so many people loving and supporting you!

  3. Katy -

    Sending you positive thoughts.......wishing you a little tranquility through this time.

  4. Thanks everyone! Right now everyone in this house is having trouble breathing, as we just left the most awesome 45 minute firework display I've ever seen, and the smoke was out of control. I'm telling myself at least one of those bright ones was for me!

  5. ((((hugs))) I get it - it could be horrible. But it could be nothing. But you've already been to hell and back, so how can you balance the it could be something small and easy with it could be something huge and horrible. And it's like being stuck in limbo land when you don't know. And it absolutely sucks. And I hate that you are there now, having to worry. I will be thinking of you.

  6. Tay. (I'm actually in Canada right now and just read this.) No Pollyanna, but no doomsday yet. Fingers crossed and mental hugs... keep us posted and keep breathing. Love to you.

  7. Hi Katy x i am in the UK and at the same point as you are right now(Metaplastic Spindle cell)..i have just had full mx with all lymph nodes removed plus muscle under the arm..left breast ..i was casually told about three months ago that two nodules have been found one in each lung!I was wrongly diagnosed late last year..told NO cancer it 'lurked' without treatment until mid April this year...I read about the left breast and rads causing possible heart condition..damned if you have it damned if you dont eh?
    I wish you strength and all the courage you already have ..may you and your family beat the crap out of it..and i send you all my love..
    I will follow you and listen to your words of wisdom...i 'googled' so much at the start..and now i am too scared!!
    With love Carol xx

    1. Ugh Carol I am so sorry to hear about all you are going through! What a scary time. This cancer sisterhood is crap, huh? Sending you love from across the ocean. Nothing to do but keep going. Hopefully we will both be able to do that for a long time! XOXO