Tuesday, May 18, 2010

Day 14

So it's been two weeks since I found out that I have breast cancer, and I finally got a little bit of good news. I've been losing my mind waiting for the results of the chest xray I had last Thursday, since that is the only diagnostic test they're doing on me to see if my cancer has spread. They lost the test or something, and I finally got through to someone today who understood that I might have a heart attack if I don't find out soon. So they got it together, and my xray is clear. No lung cancer! I almost fainted from relief when I learned that. My blood tests are normal too, but all that means is that I'm healthy in the non-cancer way that I already knew I was healthy.

When I say I was going to have a heart attack, I'm serious. I went to my internist yesterday because my heart's been beating so fast and I've been so out of breath that I was CONVINCED I had lung cancer. They did an EKG on me, tested me to see if I have a blood clot. Nothing. The doctor said it could be due to anxiety.

You think?

These past two weeks have been the worst I've ever spent. Every woman I've talked to who has had breast cancer says that the time between diagnosis and surgery is the worst. Once you have surgery, or treatments to go through, you have to focus on that and you have less time to think. I still have a lot of waiting to do--waiting to find out the results of the BRCA test, waiting to find out if it's spread to my lymph nodes at surgery, etc. And I've been thinking about the negative things that can happen with chemo--not the suffering during treatments, but the long-lasting effects. Besides the fact that I have to do it regardless, I have learned from some women that not everyone has horrible chemo side effects. I mean, besides the hair loss, menopause, fatigue and everything. As they say, it's doable.

I have to admit that one thing that really bothers me about the timing of this cancer is that I have felt so good. I'm happy with my weight, my body is working well, I've been exercising a lot, and for the first time EVER in my life, since I was 11 years old, I am getting my period on a normal, regular 28 day cycle. And now I have to give all of that up, and everyone just says I should be happy to be alive.

Are you content with just the breathing part of life? Probably not, and people with cancer are no different. There's a lot else that matters too. If it were 30 years from now, maybe I'd feel differently. But for now it pisses me off that my body is for the most part healthy, has worked well with cancer for apparently several years, and now I have to poison myself with drugs that come with skull and crossbones warnings and flashing red lights, to the point of killing some of the good stuff in my body, just to stay alive. And I should be grateful, or feel lucky.

I know that's not the "I have cancer but so what I'm going to beat this monster!" attitude that many people want cancer patients to have. But really, rather than use our strength, bravery, stubbornness, or whatever we have going for us to beat cancer, we really just wish that we could use those traits to not have the damn disease in the first place. I mean, I learned that lesson about not taking life for granted a long time ago, when I was a kid. Now I have kids, and I have a new mission--to see them grow up.

What no one likes to admit is that no amount of wanting something badly enough makes it come true. If that were the case, no parents with small children would die from cancer or anything else. You can fight, and you should, because there's nothing else to do, but you can lose. For every Lance Armstrong there's a Walter Payton. Remember when he got on tv to say he had cancer? I don't think we ever forgave him for crying. It's as if we thought he owed us something different, some different face of humanity. But if anyone should have beat that thing, based on physical fitness, positive attitude, money, resources, general likability--it was him. Let's not take it away from him by talking about strength--he had that. Christopher Reeve had that--he was Superman. But shit happens, and it happens to people who don't deserve it.

I'm not being defeatist, I'm just saying--it was bad luck that gave me this disease, and it will be good luck (and modern medicine) that gets me out of it. And of course I have all of you, which is really a necessity for anyone trying to get through something like this, as I need all the help I can get. The other things that people have been so kind to remind me about myself, which seem a little lost now--my stubbornness, intelligence, strength, humor, whatever it is that you think I have-- will help me deal with some of this in the meantime, while luck plays itself out.

I guess some of that helped me the other day, when I told Lenny that I have cancer. She had been having some issues--refusing to go to gymnastics, not sleeping well, acting out. She must have wondered why the phone was ringing so much when we usually don't talk to people much, why I was disappearing for long stretches of time on walks, why my mom was showing up to take her to school. So I just decided to tell her at the dinner table. Have you been wondering why so many people are calling? Yes. Well, I'm sick. Remember when I couldn't pick you up because I had an owie on my breast? uh-huh. Well, I have cancer. I will have to have an operation, like your dad did when you were two, and I won't be able to pick you up for a little while. Then I will need to take medicine to make me better, but the medicine will make me very tired and my hair will fall out and I will look like your little brother did when he was a baldy newborn baby. Why will you lose your hair? Well, I don't really know, but that's what the medicine does. And no medicine that you take will ever do that to you. You can't catch what I have. A lot of people will be visiting, including your uncle Luke who could take you to get some more piggie and elephant books. So, uncle Luke will be here because you won't be here? No, I will be here, I just might not be able to do all the things I can do now.

That was the gist of it. And she seemed to get it, and she has slept fine since then. Though I am still nervous as hell, it took a lot to tell her that and I'm so glad I did. Don't let anyone tell you that you can't tell a kid it's cancer. That's what it is. That's what I talk about with Gabe and when people are here or on the phone, if I talk at all. It is not like having the flu or a broken leg, and you aren't going to keel over like you might from a heart attack. It's like the thing it is, and it's not the C-word, or a death sentence, or something to brave through, but you do have to suffer first and then hopefully life will look a little bit normal again. I spoke to a very helpful woman who had a triple-diagnosis breast cancer diagnosis 9 years ago (another woman told me that at that time, they told you to write your will if you were triple negative) when her kids were the same age as mine. She said it was a gift, because they don't really know what's going on, and more importantly, they don't care. Bald? Tired? Throwing up? Boring? Who cares? They just want you here.


  1. Wow, how'd you know to say all that to Lenny? (Like you won't catch it, and medicine won't do that to you.) You must have read that somewhere. That's really smart.

    You've got so many "supposed to feel" comments in your blog, though this entry seems to get it right--attitude is just how you feel, it's not the cure. Mostly, a good attitude just helps other people around you deal, but who cares about that? Quit beating yourself up with the "supposed to feel's".

    Love you (the old, new and everything-in-between you).

  2. Maybe the timing isn't so bad. I mean, if you were going to pick a time to get a life-threatening sickness requiring debilitating treatments, wouldn't you want to get in the best shape of your life before taking that on? Don't get me wrong, I'm hoping the treatments will be, as they say, doable. But you said earlier that what you need is honesty, so I'm going for that.

    And while we're being honest, Hon, you have GOT to get your nerves under control. I may not have any first hand experience with cancer, but this I can speak on. I agree with what Jennifer is saying above on all but one point. Your attitude does make a difference for you, personally. The chemicals in your brain that are making you freak out have a nasty ability to multiply into an uncontrollable spiral. Anxiety begets anxiety and a host of other pain. If it hasn't yet gotten to the point yet where you need the Happy Pills, you know how you need to treat it?

    CALM down.

    Seriously, you have to distract yourself. Keep going for walks and swimming. Watch Magnum PI. Write some blog entries about something OTHER than cancer. Hell, practice origami. But do SOMETHING to give the chemicals in your brain a chance to dissipate.

    You said it yourself, Tay. Wishing for something badly enough doesn't make it happen. Worrying about it isn't going to do you a damn bit of good either. Worrying has a better chance of weakening you physically. I know what I'm suggesting isn't easy (from first-hand experience, actually), but you need to find a way to figuratively put your fingers in your ears and scream, "LA LA LA LA!" when it all starts to drown you.

    Now, you know I love you more than my handbags, so I'm telling you to get your shit together, for your own sake. It's been two weeks - this part of the free pass has expired.

  3. Jenn-- I have made an effort to talk to other women who have had to tell small kids when they have cancer, and everyone seems to agree that you should just tell them, as long as they know that they can't catch it. I know how Lenny's mind works so I knew she would start thinking about any medicine she or Augie had to take. I also knew the hair thing would throw her for a loop. On that note, my mom bought me some bandanas to wear on my hair now so Augie could get used to me wearing them. I didn't want to, but I tried it tonight and he stared at me for about 10 minutes before he finally grabbed my nose. yep, that's still mom!

  4. Upon further consideration, me telling you to stop beating yourself up falls under the category of telling you what you're "supposed to feel", so I withdraw it. You keep being honest. We'll keep supporting you. I hope that writing about your anxiety is cathartic and gets some of it out of your system. I like the origami idea too. :)

  5. Katy, I have to say that the way you talked to Lenny about your cancer was truly amazing. She seemed to take it in stride; I spent some time yesterday trying to prepare her for the idea that we might be away for a night when the operation happens... hopefully the lymph nodes will come back clean and it'll just be the outpatient surgery. Now with this clarification you got today that your cancer is grade 2, not as rapidly spreading, along with the sigh of relief with the normal X-Ray results means we should all be breathing a little easier. At least, once you get over that cold!

  6. This is good news - thanks for the update, Gabe!

    Also, I just wanted to send a little message to everyone out there about my comment above. It was harsh and the last bit was downright disrespectful. I went too far, but I guess I'm panicky, too. Katy and I talked about it off-line, but I wanted to go on the record here to reduce the risk of inspiring anyone else to go the *tough love* route.

    Katy, we love you and we're so proud of the fight you are fighting. You're a great mom to your kids, everyday; and this latest news is wonderful indeed! Hope your cold gets better soon.

  7. I'm glad you added that last message Julie, as I read your post in disbelief. Two weeks? Get over it?! Seriously??!!!
    You would have been struck right off my friends list! "_"

    I had grade 3, stage 3 triple negative. Had lumpectomy, axillary node clearance and then had to go back for mastectomy to get it all. Now half way through 6 months of chemo, to be followed by radiation therapy.

    Some days I have felt like dying would be the easy option, but for the most part I really want to live, even though I do not feel life will ever be the same again.

    Now I'll carry on reading Katy's blog .....


    1. Rose, best wishes to you through your treatments and much respect to you for what you are going through. (And your right about that first comment - I don't know WHAT the hell I was thinking. Thank goodness that (1) Katy's still here writing over 1,000 days later and (2) she's still speaking to me. I don't know what my life would be without her.)

  8. Hang in there Rose! It sucks and it seems to take forever and there's still fear and doubt years later--I won't lie. But you can get through it and it does get much better. And you will feel however you need to feel along the way! Starting in July 2010 this blog became a cancer photo album of sorts so you can see one example of the progression. It's a strange trip but you're not doing it alone! Take care of yourself.