The Measure of Time

CalendarLast week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

The new protocol is quite promising – a two-drug oral combination, the new one enhancing the strength of the older, tried-and-true treatment, and doing so significantly. One of the measures of a drug’s clinical value is “progression free survival” or how long, on average, before disease begins to progress again. The older drug offers about 4-5 months PFS, the new combination 11 months. (Your mileage may vary.) But I’ll take the extra six months – a lot can happen in six months!

Eleven months.

I remember when was Zach born – time moved in hours, days and eventually weeks. We measured his progress month by month, eagerly awaiting a word, a step, a spoonful of food making its was into his mouth…. Not today however, today is 15 years and counting, eagerly awaiting a driver’s license  at 16 and voting at 18 and drinking at 21. Time flies by in groups of years now, as John and I watch and wonder where it all went.

Meanwhile as adults we celebrate decades; our 30s and 40s, and now look straight into our 50s and picking up speed. We don’t celebrate 47 in quite the way we celebrated seven. Time passes quickly and the next decade is always just around the corner. 

And now I’m back to measuring the months. Don’t get me wrong – I will plan to celebrate my 60s and 70s and 80s. But now time is measured in month by month, treatment by treatment, one protocol at a time.

34 Comments (+add yours?)

  1. Casey Quinlan (@MightyCasey)
    Feb 17, 2014 @ 08:15:24

    You WILL be that girl. Hang in, hang on, we hang with you.


  2. The Accidental Amazon
    Feb 17, 2014 @ 08:45:23

    Oh, Lori…crap. I hope every month & every moment you have is full of love.


  3. Laura Temkin
    Feb 17, 2014 @ 08:50:15

    Oh was I sorry to hear this news. Sending good thoughts — only wish that could really help.


  4. Jody Schoger (@jodyms)
    Feb 17, 2014 @ 09:46:25

    You ARE that girl. I’m right there with you, sister. Sending love and hope,


  5. Barb Bristow
    Feb 17, 2014 @ 10:16:02

    Lori, thinking about you. I, too, am right there with you. Hoping for all of us to be here a long time.


  6. Susan
    Feb 17, 2014 @ 11:03:11

    Lori. I’m sorry to hear about the progression, while I am relieved that the cancer is indolent. I hope this combination works very well, has minimal side effects, and you get lots of time with it. Sending you love, hope, hugs and light – Susan


  7. DrAttai
    Feb 17, 2014 @ 12:34:58

    Love and hugs to you – we’re all here with you.


  8. Scorchy
    Feb 17, 2014 @ 12:56:01

    Well, this news has fucked up our respective days, let me tell you. I am hoping for good results with the next line of treatment. But what are we griping for? We’ve got the *good* cancer! Progression is a mere reminder of just how good we have it. All morose kidding aside, I’m with you all the way. Much love to you my friend. Wish it were better news, but we’re all here for you on the sunny days and the rainy ones. Much love and ((Hugs)) to you. xoxoxoxo


    • Lori
      Feb 17, 2014 @ 12:59:48

      I’ve been pondering that “good kind of cancer” for days! I *HAD* the good kind of cancer years ago – plane ole Luminal A at Stage II. BULL$H*T! I’m optimistic that I tend not to subcumb to side effects. Time will tell… Love you back! XOX


  9. Amanda Hayler
    Feb 17, 2014 @ 13:14:11

    I’m with you…I know we don’t know each other, we are 1000s of miles away from each other, but we have one thing in common…to be that girl xxxxxx


  10. alexandraandrews
    Feb 17, 2014 @ 13:32:39

    I think some of the best stories are the ones where people quote “the doctor gave me 6 months to live 5 years ago” go on be a devil go for 10 – just to start with !
    Meanwhile I think we should all live a bit more in the present it’s easy to put off today what can be done tomorrow, any one of us might not see tomorrow, or tomorrow might take 15 years and then we suddenly realise we didn’t do it and it’s now too late. So go ahead live month to month and squeeze out every drop of enjoyment you can and we will try to follow your example x


    • Lori
      Feb 17, 2014 @ 17:29:58

      I have HUGE problems with the doctors who play God. Then again, I have some issues with God every now and again as well. But I am drinking in what I can now, when I am well and strong and feeling great! Thanks!!


  11. nancyspoint
    Feb 17, 2014 @ 13:34:19

    Much love to you, Lori. Good luck with the new protocol. Hope all goes well with it for a very long time. xxxx


  12. Renn
    Feb 17, 2014 @ 14:12:10

    Well this just SUCKS.
    [fill-in-the-blank expletives also expressed]
    More mountains to climb. But I know you can do it. You are That Girl!
    {{{hugs}}} and gratitude for drugs and the cyber support that encircles you.


    • Lori
      Feb 17, 2014 @ 17:31:33

      Sigh – we are so lucky to have this community, aren’t we? I hate to even imagine this in the days before the internet! XOX


  13. Kate, of Kate Has Cancer
    Feb 17, 2014 @ 15:24:06

    Lori, I want to be that girl with you. I’ll even share my walker with you!

    May the new drugs bring you years of PFS while being easy on your body. Happy Family Day from Ontario, Canada!


  14. dglassme
    Feb 17, 2014 @ 16:53:28

    “what helps most is not walking alone….” then you have plenty of help. Hugs ~D


  15. Jayne Marx
    Feb 17, 2014 @ 20:04:38

    Sending my love and prayers for you and if anyone can be “that girl”, you can!


  16. karen sutherland
    Feb 17, 2014 @ 20:47:13

    well, dammit! this SUCKS big time. feeling surreal – icky, but it might bring a more gentle re-entry into the new treatment. we’ll just hang on tight for you, Lori, and BELIEVE that you WILL be that girl. sending you my warmest most gentle hugs – I hope you FEEL them I’m here with you, too.

    much love and light,

    Karen XOXO


  17. Jennifer Campisano
    Feb 20, 2014 @ 22:04:53

    Somewhere I think I commented on how much I love this post, but my chemobrain can’t recall where or if I actually wrote what I think I wrote.

    First, I am so inspired by you. I hate this news, but will be cheering you along on the sidelines. I hope the new protocol treats you well, with minimal side effects.

    Lots of love to you for decades to come!


  18. Jennifer Campisano
    Feb 20, 2014 @ 22:10:11

    And by “love this post” I mean your outlook, your positivity, and how you describe the passage of time. Nothing about progression (slow-moving or not) to love.


    • Lori
      Feb 21, 2014 @ 09:12:22

      I am humbled by your comment and I know exactly what you meant – too many “like” buttons, especially when there is news we don’t like at all!!!



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