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.


  1. Katy - we all love and support you - no matter what. Have an awesome summer this year, and here's to 60+ more with you around. :-)

  2. Katy, if you could have cancer of the balls, I would feel so totally emasculated. But I'd also prefer that to breast cancer. I'm going to start calling TNBC "Treatment Nonstandard Breast Cancer" because that's more accurately what it is. It's NOT part of the three main treatable categories, and the TNBC you had could be totally different from any other TNBC any other woman might have the misfortune to be diagnosed with. I love you babe. Let's go enjoy the summer!

    1. But then we could bond over shaving our balls. Could be worth it.

  3. This sounds like one of the most sane things you could do in the utterly insane world of cancer. Don't push yourself too hard, and have a great summer!

  4. Girl, I don't have to understand to believe you when you say that you are doing what you feel is best. It's your body and your life and I support you. I am definitely hoping that there isn't a single damn thing wrong, though. I am hoping with all of my own heart.

    I also hope for this to be a fabulous summer and birthday for you, and not because you're prepping for a "what-if" scenario.

    Sending you love...