I thought I would be blogging about the end of the year — the sweeping out of the bad stuff to make room for the good stuff that was sure to come in 2016. Eh, turns out not so much.

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I am a lost star. For months now I have floated across the sky, distancing myself from reality as much as I could. Last week my star tumbled out of the sky and smashed into earth with a resounding bang. No more hiding.

Dr. Rachel e-mailed with the troubling news that my liver biopsy revealed that my previously estrogen receptor positive breast cancer has mutated and I am now triple negative. Stupid cancer figured out how to resist the hormonal treatments far sooner than I had anticipated and hoped for. I am estrogen, progesterone and HER-2 negative–the big 3 receptors that targeted treatment aim for in order to block  progression. TNBC, as it is called, is a more aggressive breast cancer and there is no targeted therapy for it, not yet. The only way to go now is systemic or whole body chemotherapy with some of the bigger guns. My life expectancy just shortened itself even further. It also means I probably haven’t had the right chemo treatment for the past 10 months and my tumor markers are climbing. I am slipping backwards.image

Everyone was asleep when I got this news.  I looked at Tim sleeping peacefully and decided this could wait until morning. I knew I was going to puncture yet another hole in his heart. The next morning I told him the news and we cried. He got up for work and my good friend Mr. Anxiety climbed right in. I jumped up and showered, hoping he would go away. He didn’t and the shaking vomiting started. This is as real as it gets.

When I was a kid I was cutting through a neighbor’s yard at our beach house with my gang. I was about 11. A large German Shepard was tied to a tree as we ducked under the clothesline. I was the youngest in the group, holding up the rear. Suddenly the dog reared his head and began to charge. I didn’t know that his chain was twice the length it appeared and he was able to quickly reach me as I turned to run. He knocked me down from behind and bit the fleshy inside of my upper arm hard, snarling and snapping as the other kids ran back to save me. They half carried me home and then off to the ER with my mom for the standard tetanus shot and stitches. I didn’t forget that episode or how it felt–the rush of panic, sudden pain, chaos and blood–and those gnashing teeth against the back drop of young kids screaming and shouting.

The night after I learned about the TNBC I slept fitfully, tossing and turning in the dark, worrying about work, my kids, the what if’s and whens.  When would I have to get an access port surgically implanted in my chest wall? When would I need transfusions? The metallic taste and the mouth sores. Alone in the dark it is heavy and scary. I drifted off to sleep and I dreamt I was walking with the kids and Tim and the dog. Damon does not like other dogs so when we saw two big dogs behind a picket fence, I took the leash and crossed to the other side of the street. Suddenly I was holding a cat against my chest as I turned away and the bigger dog lunged at me from behind and turned into a huge bear. I tried to turn back and call out to my family for help but no sound came out as I desperately tried to scream. That is what cancer is. I woke up crying and shaking.  Most mornings have been like this. Vomiting and crying until one of the kids or Tim can talk me off the ledge. This is how real it is. Evenings are better— I can sit next to Tim,  fire up the heating pad with a pile of purring cats on my lap and drink a glass of wine, pretend my new normal is okay.

I have had several days to adjust to this new information, still have lots more questions of course, but I am ready to stop wallowing and climb back out of the deep hole I fell in. I need your prayers, good thoughts and positive intentions now more than ever. Of course there are bumps in the road, isn’t that what Dr. Rachel told me?

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Tomorrow we have a CT scan, blood work and our meeting with Dr. Rachel to discuss treatment options. I will keep going. Had a lovely lunch with Arleen today, Michelle just dropped off wine, tomorrow will be better.

Love,

Barbara

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Lost Stars
Please don’t see just a boy caught up in dreams and fantasies
Please see me reaching out for someone I can’t see
Take my hand let’s see where we wake up tomorrow
Best laid plans sometimes are just a one night stand
I’d be damned Cupid’s demanding back his arrow
So let’s get drunk on our tears and

God, tell us the reason youth is wasted on the young
It’s hunting season and the lambs are on the run
Searching for meaning
But are we all lost stars, trying to light up the dark?
Who are we? Just a speck of dust within the galaxy?
Woe is me, if we’re not careful turns into reality
Don’t you dare let our best memories bring you sorrow
Yesterday I saw a lion kiss a deer
Turn the page maybe we’ll find a brand new ending
Where we’re dancing in our tears and

God, tell us the reason youth is wasted on the young
It’s hunting season and the lambs are on the run
Searching for meaning
But are we all lost stars, trying to light up the dark?

I thought I saw you out there crying
I thought I heard you call my name
I thought I heard you out there crying
Just the same

God, give us the reason youth is wasted on the young
It’s hunting season and this lamb is on the run
Searching for meaning
But are we all lost stars, trying to light up the dark?

I thought I saw you out there crying
I thought I heard you call my name
I thought I heard you out there crying

But are we all lost stars, trying to light up the dark?
But are we all lost stars, trying to light up the dark?

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

17 comments

  1. I thought of you in church on Christmas Eve and prayed that the news would be promising. I’m so sorry Barbara, but I’m not giving up either. I will continue to keep you in my prayers and to send positive energy your way. XO Jen

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  2. I’m so sorry about the news. I was still hoping tomorrow would bring something positive. My heart goes out to you with love. I think we all wish we could take some of this pain and fear from you or somehow be there when you are frightened. You can call anytime. My love to you and Tim and the girls.

    Liked by 1 person

  3. I can’t imagine how alone you must feel—even surrounded by so many people who love you and would do anything to help. The image of you lying in the dark with this is almost unbearable. I’m sure there are many who, like me, hope we can somehow poke a hole in that isolation from time. Distraction is great, and we feel privileged to be able to provide it, but the loneliness of it all, my god. Please know that you can be yourself, which isn’t always superstrong, superfunny, Barbara Bigelow. We are there for you.

    Liked by 1 person

    1. Writing does help me process my feelings in a way I can’t express otherwise and it isn’t always light! Thank you for your tremendous support– I am very lucky to have you and Carla. Distract away!!!!❤️

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  4. We read your post together last night. It is amazing to us that you can put that all in words. So sorry for your fear, loneliness and all that you are going through. We will keep you in our thoughts and prayers daily.

    Liked by 1 person

  5. Let me get right to the heart of this and say FUCK THIS FUCKING CANCER!!!!! I was feeling pretty positive when we left Boston. You seemed to be doing well, and yet I know you can put on a good show for anyone if necessary. Now I’m just pissed, and so sorry this is happening. However, the New Year has not yet begun, and Good things can still happen. I’m praying for them every day. I look every day at the coin you gave us when we visited, and try to send positive energy your way. I am so grateful for your wonderful support group there, and of course, the never-fraying Blanket, Tim. Know that we think of you often, pray for you daily, and love you forever. 🙂

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  6. Barb. you once said that making us feel better seems a bit backwards…. it always amazes me how hearing from you is usually a relief…..this time, we all cry together…. I/We would move heaven and earth to make you and your family feel better, we will get through this together and be hopeful always.

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  7. Much love. ❤ I went through a very similar roller coaster when I was diagnosed with brain mets. Waiting and not knowing is the hardest part. Once you can get your plan in place it should help – I hope. Feel free to send me a note if you need someone to talk to, even if it is to vent some frustration.

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  8. Barb, Your eloquence and graceful composition is unsurpassed. This cancer battle has unlocked your special gift of truly expressing poignant sentiments that yield hope for many of us who take our health for granted. You are destined to inspire all whom you touch. Quoting a passage from our Episcopal Church Hymn, “As those of old their first fruits brought (Verse 3) lyrics by Forest Green

    With gratitude and humble trust we bring our best to thee
    to serve thy cause and share thy love with all humanity.
    O thou who gavest us thyself in Jesus Christ thy son
    help us to give ourselves each day until life’s work is done

    We love your thoughtful expressions, Barb, but not nearly as much as we love your incredible determination and fortitude. Your courage and relentless pursuit of self discovery is a journey for all of us to cherish. We are behind you all the way each and every day!
    Boo

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