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Not sure where to start so I will just jump in. Spent two days at Cancer House for my 12 week Pet Scan and tests to see if the chemotherapy  is working or not. Finally mastered those damn elevators and that way below sea level parking lot and even crossed the underground tunnel with Kelsey (she drew the short straw this time for accompanying me). Well, it’s not. The chemo–it is not working. My tumors in my liver have grown and I have new ones and the tumor under my dead kidney was more “avid”. I have truly mastered the art of silent crying. I can do it effortlessly now, tears just roll down without noise or complaint.

Tim and I thought we would have a long run on this chemo, touted as the big break-through in metastatic breast cancer that would slow down disease progression, theoretically, for at least 20 months. We worked so hard to get it approved it had to work, right?  I got 3 months out of it and then, my cancer out smarted it and figured out how to circumvent it. Of course my cancer would be a smart one! It is most definitely not asleep. It is wide awake and marshalling the troops yet again.

We were given 3 treatment options since this chemo has now got to go. Goodbye pablocyclib and Letrozole. After much discussion Tim and I committed to door number 3, without consultation with each other or hesitation. That’s how we roll. I am entering a clinical trial that will provide the option number one chemo, Faslodex/fulvestrant for sure plus an experimental drug called taselisib. Taselisib blocks a pathway in the body that cancer cells commonly use to grow and divide called a P13K pathway.  I will be in a blind, randomized study where group A gets both drugs and group B gets Faslodex and a placebo. Side effects are not hugely different from what I have already been experiencing.  My doctors won’t know which group I am in but can sometimes tell if someone is getting the experimental drug if they develop rashes that come and go. Something new to look forward to! This of course involves a lot of paperwork and signatures etc. I am on a 2 week wash out of no chemo treatment until my body is rid of my current toxins and my blood counts climb to a more normal range. A pause in the action. Then I will have a long day of scans and testing and blood work for baseline results and they will test my archived tumor cells to see if I have a PIK3CA gene mutation–either way I am still in the study. I will next have a top load or double dose of faslodex (which is injected) every two weeks the first month and then monthly after that along with the daily mystery pill. Pet Scans every 8 weeks to see if it’s working on tumor growth, either stabilizing or regressing (shrinkage). If it’s not working I am out of the study and onto a new treatment. This involves a lot of time at the beginning but less the further I go, if I go. Time intensive and a lot of trips to Cancer House for tests and treatment. When our appointment ended Dr. Rachel asked me if she could hug me. I think we are getting beyond the stage where she has to ask don’t you? I am all in.

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I feel a bit rushed to get this info out having not fully come to grips with it myself but too many people want to know and I don’t want to burden my circle of friends and family with a barrage of questions about me. Let me start of by saying CANCER SUCKS. Now that we have gotten that out-of-the-way–how am I really feeling? I don’t know really. We are pretty sad the chemo stopped working so soon when I was sorta adjusted to it and being back at work. Personally I feel like a disappointment to my family and friends but I know that is in my head to deal with and sort out. Tim and I have learned life can change in 30 seconds. I had an average life expectancy of 26 months and I am now 7 months in. What do I want to do with my life in the next 19 months?

imageI want more time of course!  I want more time with my family and friends doing things I love to do. I like to sit in an Adirondack chair on my deck with a blanket and a fire. I love to be with the coconuts, laughing. I love movies and traveling, reading books, eating out, drinking Chardonnay, all kinds of animals, snorkeling and the beach. The same mundane stuff that everyone wants but now it is more critically important to me, every moment of it. When life is shortened it becomes more intense, more real. And I love the little stuff. I came home from Cancer House to flowers, my favorite wine and a pink painted pumpkin that had said “brave” but was now crossed out and said “fuck cancer” from the coconuts. (They are my kids after all). My friend Michelle came over, not with a shovel this imagetime, but a beautiful quote to frame by one of my favorite authors, Gabriel Garcia Marquez that says “There is always something left to love.”

 

I have spoken a lot about the lack of awareness of metastatic breast cancer which is the only kind of breast cancer that you actually die of and the lack of funding for research to actually find a cure that would make it a chronic disease rather than a fatal one. That won’t likely happen for me but I will continue to put my energy and  passion into it. It gives me focus and a measure of meaning to my life which I have no control over. Everyone asks me how they can help me? I don’t know the answer to that since I feel helpless myself and calling attention and money to something important like this comforts me knowing that I have two daughters that might benefit. So there is that. What else helps me? Your constant support in comments, letters, texts, funny gif.s , snap chats, e-mails and in person. I could not do this without Tim Blanket and the girls. And WE could not do this without the support and care we receive from all of you, big and small. Tender mercies.

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“Friends show their love in times of trouble, not in happiness.” -Euripedesimage

See you next time, sometime in this life.

Barbara, Tim, Kelsey and Bridget

 

Radioactive by Imagine Dragons (is anyone else concerned about all the radioactive crap they keep putting in me for scans?)

I’m waking up to ash and dust
I wipe my brow and I sweat my rust
I’m breathing in the chemicals

I’m breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa

I’m waking up, I feel it in my bones
Enough to make my system blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive
I raise my flag and dye my clothes
It’s a revolution, I suppose
We’re painted red to fit right in
Whoa

I’m breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa

I’m waking up, I feel it in my bones
Enough to make my system blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive

All systems go, the sun hasn’t died
Deep in my bones, straight from inside

I’m waking up, I feel it in my bones
Enough to make my system blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

36 comments

  1. Blessings to you, your family & friends. I have a scan the 13th of my chemo not working…my liver is loaded with tumors. I feel my time is very limited. Antidepressants help. The tears just roll like you said. We are blessed with our families. Thank you for your of. ❤️Elaine

    Sent from my iPhone

    >

    Liked by 1 person

  2. Barbara,
    The honesty and insights in your posts are remarkable. Your words teach us all how to approach our individual humanity and mortality. And aren’t these some of life’s most important lessons?

    I would be honored if i could drive you to some of your treatments. I know the Dana Faber drill as I did for a friend all last winter (and what a winter it was weather wise!) so please feel free to call. Retirement sure frees my time up!

    Liked by 1 person

  3. Barb. I’m no where near as cute as the coconuts but I’ll gladly take the short straw and help you navigate the cancer house some treatment day . I’m a wonderful distraction. I’ll bring the national enquirer, jello cubes, rejected iep s, and we’ll hug whoever you want whenever you want. It would be an honor. I love you !

    Liked by 1 person

  4. I have to admit that I didn’t want to read it. Your latest entry. I just didn’t. Went to sleep. Tried to. I couldn’t. Got up. I was already crying anyway. Shit. Okay so we will see you at the DJ DreamFund event. Let’s laugh and play and be silly and have fun

    Like

  5. You have so strength surrounding you because you are so incredibly strong. Amazing. Save your energy and let the love and strength from so many carry you through the next medical trials.

    Like

  6. Well, this just sucks. And cancer should be fucked. Nice little rhyme, no?
    We’re looking into a MLK weekend visit. Keep it in mind, and hopefully you will be doing well on new meds by then. If not, we will come sooner. Song for the day: You Are A Rock, Simon & Garfunkle. ❤️💚💙

    Like

  7. Barbara,
    I never really leave the Library area so I’ve never really had a chance to get to know you that well, but I read these blogs and I feel so bad but very inspired by them at the same time… You are very brave and the strength you have amazes me…stay strong.

    Like

  8. Barbara, I feel so disappointed for you that this last treatment regiment was not successful! Please know that you are in my daily thoughts and prayers. If you ever find yourself free on a Monday or Friday( days I don’t work) and want some company, want to take a walk, need a ride for treatment or maybe just get a drink, let me know! Adriana

    Like

  9. Barbara- I found your blog after a Google search looking for some kind of insight as I have a dear friend dx’d with MBC in February of this year. I’m coming out of Lurkerville to let you know that your unabashed honesty and bravery (b/c it is damn brave to put your life out here on the web for all to read) is, as the poster above said, simultaneously sad and inspiring. Thank you for sharing your journey with us, both your friends and complete strangers like me (ack, hope that’s not too weird!!:) )

    Thinking of you and your family and sending big hugs from ATL, GA….

    Like

  10. Barbara, You are a truly amazing and brave woman….I am left speechless by your writing and feeling….I am praying for you, thinking of you and am glad that you have, with your husband, created such a wonderful loving family…know that your OA colleagues are rooting for you every second!!

    Liked by 1 person

  11. I’ve been sitting here for the last half hour having read your post. I even looked up some “inspiring ” quotes that I could send you in an attempt at peace and comfort. But more honestly,from my heart I’m sending you strength & love. I’ve known you through your wonderful husband, Tim and have thought of you and your family so often .Your courage, honesty , spunk and humor are incredible! 🙏

    Liked by 1 person

  12. Barbara, I was so disappointed to read your latest news. I want you to know that you are on my daily prayer request to St. Theresa and I have put your name in our prayer book at St. Mary’s Church. Perhaps this shouldn’t be said in the same breath but here’s hoping that prayer will win over this “fucking cancer”

    Liked by 1 person

  13. Barbara thank you for telling your story. I’ve been reading your posts but I just can’t bring myself to click the like button on anything even though it is so beautifully written because it just doesn’t feel right. So I’m popping in to let you know that you inspire me. No label exists to describe the amazing woman you have become. Thank you for sharing your journey with me.

    Liked by 1 person

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