Update 9/13/2013 (Rollercoaster Ride)

September 13th, 2013 § 30 comments

IMG_6262It’s always right when they pull the bar down over my head and jam it into my lap on the rollercoaster that I silently start screaming, “Wait! I changed my mind! Let me off!”

By then, however, it’s too late.

With a jerk the car moves forward, its underbelly grabbing the hooks to lift it skyward.

By the time we are moving, climbing, the car is making a clicking sound and I am sure this was a mistake. I wedge my knees against the back of the seat in front of me to minimize my movement.

I steel myself, knowing the drop will come whether I like it or not.

And then there is that moment, that nauseating violent moment before the floating…

For a brief portion of a second I’m airborne, held in by that suffocating bar.¬†Down we go and I slam back into the seat. I tell myself it will be over soon. I just need to ride it out. It will end.

These days I’m on a roller coaster ride that doesn’t end — well, not anywhere good, anyway.

When we last met here for an update, I said the increased dose of chemo had shown a response. That response is proving to be short-lived. Yesterday my tumor markers were up again, back in the range where we need to discuss changing chemo again. It’s been about four and a half months on this chemo combination of Aromasin and Afinitor (I continue with monthly Xgeva injections).

This is the cycle of metastatic breast cancer: chemos inevitably fail. The cancer becomes resistant, mutates, signals a new pathway to drive its survival. We have no way to know how long each will last. When you read studies and “success” is deemed an extra two months of progression-free survival you know you’re dealing with heavy realities.

The immediate plan is to increase the Afinitor one more time, to the maximum. I’m told no one tolerates this dose regimen for long because of the side effects. But I’m almost at that dose now anyway, so let’s give that a go. Even if I can get a response for one month, that will allow me time to figure out what will come next. The two options are to continue with a targeted, anti-hormonal therapy of some kind or begin IV chemo after having a port put in. There are pros and cons to each, I won’t go into them here. Once I’ve made a choice I’ll fully explain it, of course.

And so, for now, I increase the dose. I wait. I retest again one week from now, and two. By then we’ll have a plan, and likely be moving on. Another tally mark of treatments tried to buy me time.

It’s too soon:

I fear the safety bar is not locked.

I fear that each time I reach the top of the hill again I’ll be ejected from the ride, skyward, only to plummet to the ground.

 

……….

Two housekeeping notes:

1. If you only want to read updates on my chemo status and current health, I make it easy for you by titling these posts “Update” + the date as the title.

2. I’m pleased to report that this website is now optimized for mobile device reading. If you read the posts on your smartphone or tablet you will note that you no longer have to scroll left and right to read; the posts are nicely contained in columns. There is a menu at the top to navigate the site and a clean layout. To comment on posts on your device, look at the end of each post for the “replies” link to click. This should make it easier for those of you on the go to leave a comment.

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§ 30 Responses to Update 9/13/2013 (Rollercoaster Ride)"

  • Liz says:

    Thank you for the updates, they are just one more way that you teach, inspire, and show us your courage. Always sending love.

  • Diana says:

    I am sorry to hear you seem to reach the end of Afinitor and Aromasin. I hope the increased dose will give you some extra time before a switch is necessary. I had to stop Afinitor two days ago because of mets’ growth. I am back on tamoxifen, which I took as an adjuvant therapy many years ago.

    Wish you success with the increase and wisdom in decision-making for the next step.

  • Amy says:

    Love you and am thinking of you always. Know that your medical team and all who love you will do our best to hold that bar down, or better yet take you out of the line waiting for the ride.

  • Rebecca says:

    Sorry Lisa. I appreciate you being honest as usual with your update. I’ve never liked roller coasters myself, at the amusement parks or in my life. I know you and your team will make the next decision as best as you can. In the meantime I am holding you close in my thoughts as always.

  • I am wishing for a better drug combo and more time. More time. All love.

  • I used to love roller coasters as a kid, but now I find that real life has plenty of spills and chills of its own. I hate that you’re stuck on this one.

    I hope the side effects of this new dosage aren’t as bad as you’re expecting and that the path to the next treatment reveals itself without too much consternation.

    xo

  • Catherine Guthrie says:

    Hang on sister.

  • I’m glad for the update but not for the news. I know you are hunkered down, studying, planning, thinking. There are other combos and trials. I was studying some yesterday.

    And none of this mitigates the dismay that Afinitor/Exemestane isn’t the right combo.

    Thinking of you and sending love,
    Jody

  • Ann Gregory says:

    You are always in my heart and on my mind. I love you sweet friend.

  • Sandy G says:

    You hang in there strong woman. I am sending love and hugs to you!

  • Laura Lump says:

    I read these updates with great trepidation and hate it when the news isn’t good. Selfishly, I try to focus only on whatever sliver of positive you slip in…maybe to be kind to your readers, maybe to keep yourself optimistic to diminish the effects of that roller coaster. But you didn’t put much positive in this one. You’ve often said that it’s funny how cancer can make you find a new definition of “good news” or “bright side.” Taking the liberty to throw one of those out here, since you didn’t: Even though it looks like this option has nearly run its course, it’s good to know that you still have other options to consider. As long as you have options, you have time. Right?? I’m hoping, hoping, hoping the options keep coming.

  • Pam says:

    Hugs to you.

    You know you have my best hopes for the increased dose to buy you plenty of time to determine the next plan…and my hopes that the next plan works for a good long while.

    Thank you for the update.

  • I know that you want and we all want the next chemo to give you years and years and years and more years. That is my prayer for you now.

    Do you have a crowd funding site to help you and your family? Please let me know and I will promote it wherever I can.

  • David Dobbs says:

    Sorry to hear this, Lisa, and hope you and your docs come up with another with some extra staying power. xxs and oos,

    D

  • Elizabeth says:

    Thanks for the update. Sorry the news wasn’t better. Hopefully, your next plan of action will do the trick.

  • Stephanie says:

    Sorry this dosage/these meds didn’t work for longer. So sorry that it sounds like you are running thru your options much faster than you’d like. So sorry that sometimes when life gives you lemons, it doesn’t give you the sugar to make lemonade. Sometimes you’re just left with the bitter. I wish there was a magic wand someone could wave to make it all better. But there isn’t.
    Thank you for your writing. I hope it, and your community of readers, are able to offer some comfort.

  • Lisa Boone says:

    Just spoke with a cancer doc/researcher at a friends memorial service today. I thanked her for her dedication to finding “more answers” to this frickin’ disease. She said every time she is frustrated at a fail, she says “just one more, maybe that is the one” and heads back to the lab. “Just one more” is what I used to say to my kids when they were small and I wanted them to eat one more bite of veggies, and my kids would say “just one more” to pushes on the swing and books at night.

    Just one more. Maybe that will be the one.

    Sending hugs.

  • Beth Gainer says:

    Hugs. I am always thinking of you.

  • Damn it, Lisa.

    Thinking of you always…..

    AnneMarie

  • Suzanne Evans Barto says:

    Thinking of you and praying for you. I to have had breast cancer,multiple surgeries, and chemo. It is a long and tough road and I hope you continue to fight!

  • Terri says:

    I’m not sure how I found you on Twitter and now this blog. My mom used to say everything happens for a reason. Sometimes you wonder how that can be true. I lost her to breast cancer in 2007, it was a rare form and had spread to her lungs by the time they found it. They told her it was hopeless from the beginning, which I felt was wrong, but she fought a good fight. My Aunt Doris has had many kinds of cancer over the last 25 years, how she is still here her doctors don’t know, she seems to keep on going no matter what happens to her. None of us really know what’s ahead, but we are here for the ride and hope it isn’t a bumpy one. I am praying for you and hope that the next step you take will be the one that helps you live as long as you would like to! God Bless….

  • BlondeAmbition says:

    If not for the holiday, I’d use more colorful language, but I’m sure you can fill in the blank (hint: It rhymes with “duck”). ; ) I’m sorry to hear this regimen has run its course. I will hold good thoughts for the next one. Your roller coaster analogy could not be more spot on. I loved them as a child and as I got older, they lost their appeal for me. You’ve given it new symbolism. Enjoy the beautiful weekend we have ahead and sending you much love. xx ABH

  • Kim C says:

    In coping with cancer, a roller coaster ride would seem like a walk in the park. I’m hoping and trusting these next steps will give you more and more years to come.
    I’m sending my best wishes and good thoughts your way, Lisa.
    Kim

  • Dee Anne says:

    Thanks for the honest update. Not a fan of the roller coaster myself, but am a big fan of your honesty, courage and heartfelt words. I wish for you beautiful time and loving moments with your family. ((HUGS & LOVE))

  • Kristin says:

    Lisa please know that I’m thinking of you a lot. I know you live very far away from me, but I feel like I know so much about you from your posts. You are so strong and levelheaded. I’m sure this is one ride that you wish you could close your eyes on, and it just sudden;y stops. My thoughts are with you sweetie–

  • Greg says:

    I loved Kathleen Hoffman’s post. Spoken like a true Phd. Yes… years and years and years.

  • Alicja says:

    Lisa…..hi..i have been reading this andbefore anything i need to say that i feel special now because iam lucky to have known you in person!!thinking of you very
    Often,miss those Mondays when i would watch you raising Paige and Colin/ek/ .
    have always admired you as a mother and young woman of great accomplishments!
    Sending best wishes and hugs…
    YOUR SMILE can conquer ANYTHING !

  • Jennifer says:

    I come across your website looking for advice on when a daughter loses a mother. Your post is very insightful and comforting. I read your 9/13 post, I’m so sorry that your recent treatments are not working. Please continue to be strong and hopeful, that roller coaster bar is on tight. My thoughts and prayers are with you and your family.

    Best Regards,

    Jennifer

  • Laurie says:

    This website popped up when I queried how to best respond to a dear friend whose husband is dying of esophageal cancer. While it isn’t the first time I’ve dealt with friends who have suffered tragic losses….what I want most is to offer comfort, and support. While it may seem that there isn’t a wrong way to offer comfort, after reading your blogs and some posts it inspired beautiful thoughts of shared, wonderful, fun, loving experiences. Not a fan of rollercoasters myself…..I share everyone’s thoughts and wishes for good days and happy moments still….and for more of the things that bring you the “good” and the joyous.

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