Get Me Off This Rollercoaster

A few weeks ago we went to Whistler on a family trip that we planned months ago, I noticed being out in the wild how many people take such horrible care of their bodies.  In a mountain town full of active people, there were also many people that had their hands clutched to their Frappuccino Starbucks extra venti milkshakes.  Maybe I’m a little sensitive since I’m currently in sugar jail and know how good those can taste….but I noticed it nonstop because I can’t have it (since cancer grows in sugar).  It saddened me to see how people were treating their bodies.  I look around at people being so unhealthy; yet I have cancer.

One of the side effects of the drug I’m on is low blood counts.  If they get too low then I have to stop the medicine and take a break.  They can adjust the dose a couple times for the medical trial…but if I don’t respond, then I’m off the trial.  My blood counts have been hovering on the low end.  I get checked every Monday and spend the day at UCLA.  I knew I was low so I devoted this last week to researching how I could change my diet to help reduce cancer (starve it) while increasing my white blood cells.  For days, I bought and poured through cookbooks, wrote recipes, and made a plan. No processed. No sugar (you’d be surprised how sugar is in everything).No gluten. No caffeine. No dairy. No alcohol. No fun.  Mark and I spent an entire afternoon slowly walking through Whole Foods reading the backs of every label that was put in the cart.  Spirulina–throw it in.  Cashew cheese – yum, I’ll make it tonight. Garlic everything, check. We felt like we had regained some control…“That will be One Million dollars and 63 cents.  Paper ok?” gulp.

Monday came around and it was test day.  We drove down to UCLA and I felt irritable.  I didn’t want to go down there – devote a whole day to getting tests and blood draws.  I was over it and I’ve only just begun.  I told Mark I felt like I was in a straightjacket and just fighting to get out. Every time I’d fight to find a way out, I’d just exhaust myself and be brought right back to this moment.  There is no way around it.  I have to stop trying to get out of it and just be in this straight jacket moment of my life.  We arrived at UCLA and like every week the paperwork began, vitals and waiting. Then the doctor came in (I only see her every 3 weeks so I was interested in what she’d say…).  She felt the lymph node in my neck which is one of the spots where the cancer has metastasized.  “Where is it? ... I can’t find it.  Ohh there it is…its sooo small.  Before it was so noticeable. This is a wonderful response in only 3 weeks!  This is great!!”  Mark and I squeezed each other’s hand walking out of there.  My cheeks hurt from smiling.  Yes!  It’s working…I felt like I got a bit of my life back in that moment.  Reprieve. Lightness. Gratitude.

We went upstairs to the infusion center where I had to get blood work done for the next 3 hours.  It’s a beautiful room with all windows overlooking the ocean.  There are chairs set up for people who are getting chemo treatment. I found my spot and sat down giddy with relief.  Mark and I were sharing in this great news and thrilled. This was nice because then I didn’t care as much when they couldn’t find my veins (which is a common problem). After three tries and 40 minutes later I was all hooked up.  We sat looking out the window and listening to others in the infusion chairs.  To my left was a man with a great attitude receiving chemo.  He talked about his recent trips, his grandkids, his love of life.  He was kind and had perspective.  Mark and I both mouthed to each other silently ”I like this guy…”  He was a joy to listen to. To my right was a man laying down in the chair whose coloring was ash grey.  He looked lifeless and thin.  His wife slowly rubbed his head lovingly while looking at his face as he received chemo.  I was grateful for my situation and reminded not to complain.  It can always be worse.

After about an hour my trial coordinator came and I could tell with the look on her face that it wasn’t good news.  “Your counts are too low …you can’t receive the medicine for the week.  If they come back up, then we can give it to you but at a lower dose”.  I stared out the window trying to find the loophole – the way around it, under it, or over this news….I’m stuck.  I have to go through it.  I’m back in the straightjacket.  I can’t move and am reminded once again exactly – exactly where I am.  I am brought to this moment – to my life that I can’t undo – that I have to sit in, be with, and accept.  I can’t change this.  “Wait, I was just told the medicine is working incredibly well – and now am told I can’t have it because it’s hurting my body?”…This information couldn’t compute for me.   So I’ll have nothing in my body fighting cancer this week?  Nothing… but spirulina and seed crackers?  I’m stuck and I know better than to fight to get out of the straight jacket.  I’m learning that if I fight it or not, my reality will not change.  The situation is still the same.  This is my life.  Not even two short months ago, it was a very different life.  It all changed in an instant.  But this is my new reality.  Sit.  Accept. Surrender.

Wave the white flag.

I was too overwhelmed with emotion with such extreme highs and extreme lows in a few short hours.  I got up and went in to the bathroom.  Before I could even shut the door, I started sobbing.  I was so sad, I couldn’t even keep the noise from my sorrow quiet. I stood in the center of the restroom with my head hung... watching tears like raindrops splash on the green tiled floor by my feet. I kept whispering over and over – ‘Get me off.  I don’t want to do this anymore.  Get me off this rollercoaster. I’m done.  I want to get off. I want to get off’.

Two years ago today I was diagnosed and heard my name and the word cancer in the same sentence.  I’m so sick of this unwanted roommate that has permanently moved in with us. I hate what cancer has taken from me and my family long before it ever has taken my life.  Cancer plays with your mind and thoughts while stealing your carefree existence.  It is relentless, wearing and heartbreaking…and my fight in this stage has just begun.  It crushes me to watch Mark go through this.  I apologize often and he tells me to stop - saying these are the genes I was given and I didn’t ask for this.  Yet I feel so bad – so sad – so angry.  So we journey together sitting side by side on the rollercoaster. Hands up even though we both desperately want to get off.

I’m starting to accept that what will be will be.  It doesn’t matter how I justify it – my reality still will be how it is.  I’m trying to step off the ground of my thoughts and step into the flow of the river that is my reality.  I need to stop clutching to the side of the riverbank and just wave the white flag.  In this state of vulnerability I’m reminded again that I’m not in control.  This will unfold and no matter what, I will keep marching forward.  On this ride, there are steep ups and dramatic downs.  On the ups, celebrate and say thank you…If your life is fairly easy going right now, you’re in an up.  Be grateful because we all have some downs.  My new reality is the certainty - of the uncertainty of it all. I’m starting to just focus on what I know for sure (I am alive today, I have many blessings and I feel good!) vs. what I don’t know (downward quirkscrew spiral of thoughts to oblivion while screaming my head off).  Every day I am learning to accept more fully that... this is my life, and I'm not in control.  I often have to say that over and over to help it sink in.

This is my life. 
My one wild and precious life.  
This life is a gift.
…and I'm learning what it means to really be here living it.

9 comments

  1. Michelle, I was introduced to your website through Todd. I have watched the trailer; viewed your photos and read your illustrious blog. You are a gift to all who come here. Your journey is a challenge...to be sure. However, your transparency; your willingness to stay focused on your goal of healing and to live in the moment...however beautiful or painful it may be....is such an inspiration. I came to this site as a stranger. I leave it...for now....as a friend on your journey. Great blessings to you.

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  2. Michelle, Thank you for sharing your journey, your insight and your struggles. Thank you to our mutual friend Justin for introducing me to your blog. I will make sure to share your movie and your message with everyone. Positive vibes, thoughts and prayers headed your way!

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  3. Michelle! The way you write your blog posts, how you describe what you are going through and how you are feeling... it's just so real. I just finished chemo in May and I came across your blog through a repost on Instagram. I watched the trailer for the movie and cannot wait to see more. From one cancer survivor to another.. keep kicking cancer's ass! Keep it up!

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  4. Congrats on kicking cancer to the curb and finishing chemo!! Time to live life with gratitude- and enjoy this wild fantastic ride. Thanks for your note! Michelle

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  5. I frequently want off this roller coaster, but it seems it is the life we are given. I hope your counts improve soon so you can get your meds that are doing so well! So very frustrating!

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  6. Michelle and Mark,
    Our hearts are with you on this journey. Michelle, you are an inspiration to us all. We can't wait to see the documentary. Please hug your darling daughters for us.
    Kathy and Steve Miner

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  7. I was told about your journey and blog by Lisa S. I am a BRCA1 cancer survivor as well. Diagnosed when my kids were 4, 2, and 8 weeks old. Your story is so familiar to me. Not being able to receive treatment because my counts were too low, feeling guilty for being sick, even that panicky feeling when treatment is over and there is nothing to do but wait. Please know that I am praying for you and your family and I will continue to follow your journey. Fight on--Hugs, Kristin

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  8. Michelle, just checking in on you and the girls. I'm glad you are still writing, still fighting. That in and of itself is great news. Lots and lots of love to you - Ms Erin

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