Time

Even though I am doing really well, I can’t help but feel some anxiety about the 2-year mark that is coming up. My counselor has banned me from the BC.org discussion boards for the next 2 weeks, to get a break from the information overload and the negative stuff. We lost about 6 active members in the last few weeks, and it’s depressing. Also, someone just diagnosed with liver mets posted some research results that were interesting, but very very discouraging. In this UK study from 2003 that followed about 150 women with liver mets, only 1% made it to the 5-year mark. The average survival for the women that responded favorably to chemo was 14 months. Now this was before Herceptin was being widely used, so my prognosis is better.

I have known from the beginning that 2-3 years is the most likely, reasonable expectation. So as I approach 2 years I can’t help but sometimes think about it and wonder if this is the “last” of everything. Last birthday party? Last Christmas? Now, this is not useful thinking. But it’s there and I have to actively work to move past it and not dwell. But yesterday I was reading a message board thread about stage IV women with liver mets that someone had started in 2009, about side effects from some treatments. It was an interesting and informative thread, but when I clicked on the names I learned that all 9 of the women posting there have died. None of them made it 3 years.

Now, I understand the reaction other people have and I get it when they say “any of us could die tomorrow, we could be in a car accident. No one knows when their time is up.” I get it, I do. But it’s also kind of bullshit. Living with an incurable cancer that you know will cause your death in the next few years at best is just not the same as the average person’s risk of being killed in an accident. The constant treatment and side effects and the loss of options like career and kids and all that– well, it’s just not the same life as the average 36-year-old woman. So when someone tells me “you never know, you could live for years!” I know that they mean well and are trying to be positive, but they are also ignorant and afraid to face the reality. Or talk about it. And that makes me a little crazy.

I don’t want to be a bummer and talk about death all the time. But this is what is real to me. My life is focused on cancer and treatment and doing what I can to maintain a good quality of life each day. Terminal cancer is my reality, just as some of my friends have lives that revolve around their jobs or their kids. It’s what they do every day, it’s what their life is all about right now. I understand that my diagnosis and treatment is uncomfortable for some people. But it’s just as uncomfortable for me to feel like that reality is dismissed by others. My life revolves around cancer, even if I don’t like it.

Infusion is tomorrow and then a PET scan on Thursday. I expect good results from that, so am not anxious. More annoyed that I have to prep for it and spend 3 hours going through the scanning process. Ugh that barium drink is nasty!

7 thoughts on “Time”

  1. Super big hugs to you at your 2 year mark! I can imagine how infuriating it must be to have ot live with other people’s denial after you work so hard to accept something so serious for yourself. That would drive me nuts!
    Are you interested in alternative therapy at all? I read a great article in Prevention about foods that shrink tumors; ginger , turmeric, pomegranate, berries, etc.! Good stuff.

  2. Thanks Hils! I am interested in complimentary therapy for sure. I don’t believe diet can cure cancer, but I do believe it can help manage side effects, increase energy, and just generally help with having a better quality of life. I’m reading the book “Anti-Cancer: A New Way of Life” and that doc suggests tumeric (among many other things). I’ll have to check out the Prevention website. I’m slowly starting to work on improving my diet, it’s quite a process!

    1. Hey Karen,
      I am so moved by your blog entry. It is so difficult to live with the awareness of a terminal disease. I think you are so inspirational and should pride yourself in being such a fighter! I agree with your doc who says stay away from the internet. It ALWAYS gets me in trouble with my anxiety when it comes to cancer. I read the Anti-cancer and have adopted lots of the info. Another great book is “Crazy, Sexy, Diet”. I’m reading it right now. It is similar in thought, but talks about alkaline vs. non-alkaline balance. Sending you lots of healthy vibes!

      1. Becky! I think about you all of the time. I know other women with earlier stage breast cancers that struggle when the treatment is “over.” Because everyone around them wants to move on and forget about it, but the tests and the fear of recurrence and all of that stuff is still on their minds. I hope you are still getting the support you need and are out there kicking butt. I think about your Dad, too. I can’t imagine what it’s like to go from being the patient to the caregiver. Friends and family have it the worst, I think.

        Let me know if you’re ever up in Seattle this summer and have time for a coffee break again!
        xoxo

  3. Thanks for posting about this, Karen. When we spoke on Saturday I’m pretty sure those exact words came out of my mouth. Call me on that shit, lady! I sure hope we get to enjoy your lovely, funny, delightful presence for a long time, but I feel incredibly lucky to know you now, and for however long you are here on this planet, doing your awesome thing. I know death is clearly a part of what you’re facing, and I think it’s practical to acknowledge that. I appreciate your candor and frankness about your feelings and the issues that come up around it.
    You continue to be one of the most honest, heartfelt, and open women I know. I cannot fully capture and express what a valuable and rare thing that is to find in this world. Thank you.

  4. Karen, you are most definitely one of the smartest people I’ve had the pleasure of being friends with in my life! There’s just no way for me to imagine what it’s truly like to live with your diagnosis. And denial is the queen of emotions…for someone to accept that someone they care for is going to die in the short term equals ‘giving up’ to them, rather than simply acceptance. I’ve unfortunately watched too many family and friends struggle with this (self included), and am always in awe of the strength of the person living with terminal cancer…and sometimes the downright mule-headedness of those in denial. Human nature, I s’pose, but that doesn’t make it easier for you, I know….

    And I agree…keep your ass off of the internet ;). Well, except for Facebook. And Goodreads. And your blog. And shopping.

  5. Karen…I don’t know you personally ….your dad is a colleague of my husband’s so I can’t say that I’ve earned the right to address your situation but I feel compelled to respond to your recent post. I can’t begin to imagine what life is like for you and for your family and I pray that I never have the opportunity to know because I’m not so sure I’d be able to face it with the same courage or tenacity. I could say I admire and respect you (which is true) but “so what?” That feels somewhat trite and really doesn’t address the enormous burden you carry with you day after day. I will say, however, that reading your post today has given me pause to reflect on my own life; what I am grateful for and an awareness of what I need to let go of or lighten up about. It reminds me that “how” we live our life is far more important than what we “do” while we’re living it. Yet, most of us obsess over what we have or have not accomplished…is it enough, will we ever get it done, should we do more, have we failed, are we a success? All of these questions and more haunt many of us as we walk through our daily lives. Reading your post reminds me that what really matters is that we “love” each other and that can happen whether we are healthy or on our death bed as all of us are capable of giving love. Thank you for that reminder Karen and good luck tomorrow…I’ll throw some positive energy your way!

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