A couple weeks ago, when my children were not eating yet another one of my homemade dinners, I started lecturing them about how actions speak louder than words, that I hoped they would always follow through with acts of meaning and substance.  As they sat sullenly over their bowls of Japanese beef curry stew and rice, I told them about how my parents never told me or my siblings that they loved us; they still don’t.  But we always knew that they loved us.  Always.  We knew because they worked long hours, six days a week, to make ends meet.  We knew because they were always there when they weren’t working.  We knew because they always cooked the most delicious meals for us.  I told my children about how food, the making of it, the enjoying of it, is often an expression of devotion and love, that I cooked these nice meals for them because I loved them and wanted them to eat healthily and to grow.  So, how did they think I felt when they didn’t eat my food.  Sweet Isabelle eagerly raised her hand like she was in the classroom.  “Yes, Isabelle,” I said.  “Bad?” she replied, somewhere between a statement and a question.  Mia continued to sit, seemingly ignoring the whole exchange and me especially, no doubt practicing for her preteen and teen years.  Despite my attempt at inciting guilt for rejecting my act of love, the kids didn’t touch their dinner that night.

And yet my words seemed to have seeped into their brains, at least Mia’s.  Mia made me a card yesterday for Mother’s Day that read, in part, “Thank you for taking such good care of us and for loving with action.”  Yes!!!!  I was so happy.  It was the best gift I could have possibly received for Mother’s Day.  That and the continental breakfast of a smushed toasted croissant, unwashed raspberries arranged in a triangle and a hard boiled egg that had been in the fridge for days.  The best Mother’s Day yet.

On this day after Mother’s Day, I got to the hospital again, this time for radiation simulation.  I am thinking again about the idea of love with action, about how in truth this struggle to survive and live well these almost four years is a tremendous act of love.  Through the pain and suffering, exhaustion and fear of more pain and suffering, I have lived not because I am afraid of dying, but because I am expressing my love.  Love for my children.  Love for my husband.  Love for my parents, siblings, family, friends.  Love for life itself.  As trite as it may sound, love is a powerful force that can motivate through fear, depression and paralysis as nothing else can.  It is what has kept me going all these years.

I find myself afraid again today.  The period of breathing more freely was short-lived. 

The official scans were consistent with the PET scan, except these scans were unequivocally good, with the exception of two specific areas.  There was widespread shrinkage everywhere when compared with the pre-trial scans, with some tumors showing more dramatic shrinkage and some showing minimal shrinkage.  A couple of the lung mets seemed to have grown minimally as did the bone metastasis in my thoracic spine at T1.  I was shocked to officially have good news.  For over a year, all I had heard was bad news.  Two prior experimental treatments had failed.  I know all too well the odds of a clinical trial working.  And yet mine was working, at least for now.  I felt a sense of achievement, of pride, like I had aced the exam.  I had emailed Dr. AC to give him the good news after the PET and then again after the official scans.  His response:  “That’s amazing.  Good job.”  It really was a “good job” on my part.  After standard of care failed last June, I did the off-trial immunotherapy and radiation combination that Dr. AC proposed to me, in part because there were no attractive trials available at the time and because Dr. AC thought it was worth a try.  When that failed, I ran to Dr. M, a preeminent colorectal cancer oncologist at Georgetown, and did the SGI-110 clinical trial being offered to me by MSK because Dr. M said it was a reasonable trial to try.  I was so tired of thinking and making decisions so I did what this famous oncologist told me to do.  When that trial failed disastrously with the cancer spreading to my liver, I became disillusioned with all oncologists who pretended to know what was best.  I found this trial through my online communities and I fought tooth and nail to get into this trial, even to the very end when the risk of paralysis threatened to rob me of the opportunity..  I charmed.  I harassed.  I begged.  I waited.  And I got what I wanted.

But as you have probably figured out by now with my life and with cancer in general, nothing is ever so simple.  No success or joy is ever unadulterated.

My oncologist at MSK, Dr. V decided that it would be prudent for me to see a radiation oncologist to consider radiating the bone met in my thoracic spine.  Over the past several weeks it had begun causing me considering pain and discomfort in my upper back, at least we assumed the pain was attributable to the met.  While there was the small possibility that the slight growth in the tumor was a delayed inflammatory response to the immunotherapy, we couldn’t know for sure.

I saw the radiation oncologist, Dr. Y, last Tuesday.  He advised radiating as soon as possible.  He said that while I had had “such a nice” systemic response to the protocol elsewhere, especially in the liver, the bone met seemed to be resistant.  It was possible that the slight enlargement was a delayed inflammatory response but because my spinal cord was at stake, he would not take the risk of waiting.  I agreed.  I told him I didn’t want to become paralyzed.  He said, MSK wouldn’t allow it to come to that, that I would have surgery before then, but we wanted to avoid surgery as well.  I agreed with that too.  Of course, surgery may be required if the radiation fails to stop the tumor from growing.  Colorectal cancer cells are not that sensitive to radiation (unlike for example breast cancer and prostate cancer cells).  So, I’m going to have SBRT, a type of intense and highly focused radiation where a vast majority of the radiation will be absorbed by the tumor; there will be a small amount of exit radiation which may cause short term side effects, like a sore throat and fatigue.

Dr. Y told me that there is a 1% chance of paralysis from the radiation.  It was so refreshing to have someone be able to quantify the risk of paralysis, unlike Dr. S who was unable to quantify the risk for me when discussing the trial drugs’ likelihood of making me a quadriplegic.  There’s a 10% risk of osteoporosis and therefore fracture.  But I think in this case, the potential benefit greatly outweigh the risks.  And then there’s the Holy Grail of potential benefits, the “abscopal effect”.  This was what I was seeking with my first experimental treatment with Dr. Formenti, where localized radiation to one tumor, not only causes shrinkage in that tumor, but also shrinkage elsewhere through a widespread immune response triggered by the radiation and its inflammatory side effects.  Dr. Y says it’s real and he has seen it happen with colon cancer.  This was news to me as I had never met anyone who had seen it happen with colon cancer.

Unlike many clinical trials, this clinical trial permits radiation while on the study.  But it cannot be done on treatment days or on the days surrounding treatment.  So in my case, that means, the three requisite radiation treatments must happen consecutively on a Monday, Tuesday and Wednesday.  With Memorial Day coming up, this might be a bit of a scheduling problem.

Today, I am going in for the simulation, which involves having a back and head mold made.  I will also have an epidural and then CT contrast will be injected into my spine so that when they do the CT scans they will see my spinal cord very clearly, so that when they plan the radiation, they make sure no radiation hits my spinal cord.  Thinking about this causes me mild panic.  Seriously.  They’re going to give me something to calm my nerves before this all starts.

I’ve had SBRT before, with Dr. Formenti last summer as part of the immunotherapy and radiation experimental treatment, but then she targeted a non-vital lymph node in my pelvis, not my spine! And the amount of radiation was much, much less.  Then, the goal was to try to stimulate an immune response, not to actually kill the tumor.  Now, Dr. Y will be trying to blast the tumor to smithereens.

Typically, it takes ten days for all the preparatory work to be completed – the molds made, the virtual 3D images of my tumor and spine created, the physics of the radiation to be calculated.  Well, ten days from today means next Wednesday.  I can’t start the treatments on Wednesday.  And then the following week is out because of Memorial Day.  I’m going to go in today and continue begging for them to accelerate the prep work so that I could have radiation starting next Monday, especially since my pain is worsening and I’m starting to feel numbness in my arms and hands.  Yikes!!!!

I keep telling myself that MSK is the foremost institution for spinal radiation.  There is no better place.  I keep telling myself to have faith in the Forces of Good that have always watched over me.  I keep telling myself that actions speak louder than words, that I’m doing this for my children and everyone else I love so much.  I keep telling myself that love will get me through this.  And that includes the love of all of you who have followed my journey, who have thought good thoughts for me and prayed for me.  You will never know how much you have bolstered me.  I ask for you to think good thoughts and pray again for a successful, uncomplicated, speedy radiation treatment resulting in the Holy Grail “abscopal effect,” that will boost the continued effectiveness of the study drugs.  Thank you for all your support and love.

18 Comments (+add yours?)

  1. Maia Cee Cee Walker
    May 15, 2017 @ 11:02:47

    With you. Always. Go get’em.


  2. Linda
    May 15, 2017 @ 11:37:45

    Angels are with you.


  3. Valerie Barkus Kantner
    May 15, 2017 @ 11:38:45

    You definitely have my good thoughts and prayers, Julie. And, by the way, I agree with your observation that love is best expressed through action, not words. What you have done over the last four years is the best expression of love there is. Fight on, Julie; fight on!


  4. Maureen Doran
    May 15, 2017 @ 11:52:54

    This is my action to show you I am sending you ❤️ and good thoughts for great success. It seems too little but I hope when added together with all who root for you it will continue to bolster you.


  5. Holly Han
    May 15, 2017 @ 12:17:35

    Anxiously supporting you.


  6. Valerie
    May 15, 2017 @ 13:34:26

    The first part of this blog made me laugh so hard! You are an amazing mom, Julie. Sending love and hoping for the best!


  7. Anne
    May 15, 2017 @ 13:58:08

    Prayers and strength coming your way.


  8. Joanne LaGrega
    May 15, 2017 @ 14:33:10

    Julie, you are in my thoughts and prayers everyday. Sending all good thoughts and love to you.


  9. courtney
    May 15, 2017 @ 15:40:22

    Thinking about you today Julie. Thank you for updating and sharing your thoughts. They inspire me and help me while I walk a similar journey, only as the spouse. I’m praying for you and hoping the radiation does it’s job! xoxo


  10. Barbara Gettelman
    May 15, 2017 @ 22:25:43

    Every day I think of you and your courageous battle, a live ACTION figure. If action is love your family is cocooned… I am “praying” for an easy, timely, successful procedure. So many care so much and lovingly support you.


  11. Shira
    May 15, 2017 @ 23:06:53

    I have been reading your blog for a while with great interest. I too am a young mother of three with stage 4 colon cancer and I can empathize with your fight. I am rooting for you as I hope and pray for my own recovery. Keep fighting.


  12. Rebecca Wu
    May 16, 2017 @ 01:40:44

    Another good news that deserves a celebration! Hoo-ray! – Rebecca


  13. Eric
    May 16, 2017 @ 10:28:29

    Julie, happy to hear they’re going after the spinal met. Clearing this hurdle will be another big step towards NED status. Pulling for you to get there.


  14. Sarah Gonzalez
    May 16, 2017 @ 11:34:22

    Praying for you!


  15. Nuria
    May 19, 2017 @ 15:30:42

    Hoping that those focused beams nuke that bastard into oblivion!


  16. Paul Richard
    May 24, 2017 @ 07:50:50

    Informative! Thanks.


  17. Ward Jacobs (AKA The Astonishing FartMan)
    May 28, 2017 @ 20:58:45

    Go Julie!!!!!!!

    Let me ask you, for Memorial Day, what could be more fun than pretend tattoos? Especially if the tattoos are of a patriot theme with stars, flags, etc. Did you get one? Yes, I think you did. Did Josh get one? I hope so. Are they all used up now? If I remember correctly from when my own daughter was a little girl, pretend tattoos get used up pretty quickly.

    What a joy to meet you, Mia, Belle, and Josh! What darling girls! Although they are ever-so-sweet, one sees in them a core of strength.

    Please apologize to Josh for me. He invited me to walk down to the lake with him, and I said yes, and then I got distracted and felt I had elbowed in on your friends’ hospitality more than was polite, and I didn’t recollect having accepted Josh’s invitation until halfway back to Bastrop. I actually thought about turning around and knocking on Lisa’s door and saying, “I’ve come back to walk down to the lake with Josh.” But that would have seemed too weird, even for me.

    Julie, I could have talked with you for hours on end—not just about my stupid cancer and your stupid cancer—about everything. I am sure we would eventually disagree on any number of things, and it would be the most pleasant enlightening disagreement.

    Was it merely a happy coincidene that we happened to be in Austin at the same time?

    Maybe so, maybe no.

    Thank God for Happy Coincidences.


  18. Barbara Gettelman
    Jun 11, 2017 @ 19:57:48

    Julie, I’m thinking about you and “praying” that you are strong and hopeful. You have a place in my heart and always will.


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