Dying Young

[A quick update on my upcoming exploratory laparoscopy – I got a call after publishing my last post informing me that Dr. D.L. wanted to move my procedure from Thursday to first thing Friday (Halloween) morning, to ensure that I wouldn’t be the last surgery of the day and wouldn’t spend all of Thursday waiting indefinitely for the OR. Josh and I will have to be at the hospital by 6 a.m. Awesome… On Monday afternoon, I went to Mount Sinai Hospital for pre-op (where they take your vitals, ask a bunch of questions like if you’ve ever had a bad reaction to anesthesia and do blood work) and was told by the anesthesiologist that a procedure like mine usually takes about 45 minutes and that I would be in the recovery room for about two hours afterwards. He expected I would have minimal pain. I saw him, an internist and a physician assistant, and they all seemed to be scratching their heads as to why I was undergoing an exploratory laparoscopy when the notes indicated that I seemed to be clean. It reinforced to me how unorthodox this surgery is. Even these medical professionals who understand the deceptive nature of cancer were swayed by how I looked like the picture of health and breezed me through the pre-op process. I didn’t even have blood work done because I was able to pull up my most recent lab results from NYU through the online patient portal, which was acceptable for their purposes. When I got back from the hospital, I found a letter from my insurance company in my mailbox informing me that the exploratory laparoscopy had been approved. So there should be no hiccups. Barring some horrible outcome, I should be home in time for trick-or-treating on Friday evening and have lined up my sister to help out in case I’m not feeling enough Halloween cheer to accompany my girls Thank you for all your messages of support and concern. Now, onto the real point of this post.]

Two weeks ago, I went to Washington, D.C. to attend the Chris4Life Colon Cancer Foundation’s fourth annual Blue Hope Bash. It is Chris4Life’s signature gala event, where in one evening, against the posh backdrop of the Four Seasons Hotel in Georgetown, the organization raises hundreds of thousands of dollars. I had attended last year’s Bash when I was still a newbie in the world of colorectal cancer and knew no one. What a difference a year makes! Whereas last year I stood awkwardly in a corner like the proverbial wallflower, this year I was a virtual butterfly, fluttering here and there, talking to fellow cancer survivors/patients, grieving widows, hopeful doctors and a random assortment of other people who had gathered to show their support for a cause that desperately needs more supporters.

In the midst of the fluttering, I realized that just as there are people who have lost interest in me, this blog and my story (as I wrote about in Going Public) or at least that initial spurt of frenzied fascination brought on by the horror and shock of initially learning of my diagnosis, I have lost interest in the colorectal cancer community too. Really, “lost” is not the correct word for that word is not fair to either the intermittent readers of this blog or members of the colorectal cancer community, a community of which I am certainly a part. I know people, even if they are not reading this blog, still care, and I very much care about the colorectal cancer community. Rather, the loss is more like a lessening in the intensity and urgency of the interest. It is akin to the washing away of the heart-beating excitement and soft glow of falling in love and then settling into a contented monogamous state. That is not the most appropriate of analogies but the best universally understandable one I can come up with. Incredible stories of unlikely cures no longer engender the degree of hope they might have once. With very few exceptions, the story of yet another person being diagnosed with Stage IV colorectal cancer or the tragic announcement of the death of yet another member of the community barely seem to make me feel even a twinge of sadness. Such realities are par for the course for me. Already a pretty hardened – some (like my husband) might say fairly unemotional – person to begin with, in a way cancer and being part of the cancer community, has made me even more stoic and cold. Within the last 16 months, I have experienced enough heartache, pain and disappointment, and my response has been to grow a thicker even more impenetrable skin so that ideally nothing and no one can hurt me quite that deeply again, not being told no when I ask for a donation to my fund, not hearing about the death of someone I know, not even, if it were to come to pass, being told that I have cancer everywhere and that I won’t be here to watch my daughters grow up, nothing. My attitude these days is more often than not, “Shit happens – so what?” Sure, I show the appropriate social responses when someone tell me about a tragic illness, injury, death or disaster, but inside I feel little, like that part of me that was once capable of human compassion has died, killed by the cancer.

Apparently, as I learned that night, my skin isn’t as impenetrable as I had thought and cancer hasn’t killed all my compassion. Watch this video of Rachel Yingling, the recipient of the Andrew Kolar Advocate Award, and you will understand. It is a short video, so I urge all of you to watch it. I didn’t cry, at least no then, but I was shaken and heartbroken.

I met Rachel last year on one of my trips to D.C. We sat at the same table for dinner after a day of patient advocacy training. She was young. That was the first thing that struck me when I met her. She was diagnosed with Stage IIIB colon cancer at age 26 more than three years ago. Whereas Stage IV colon cancer has a five-year survival rate of anywhere from 6 to 10% (depending on the study), Stage IIIB colon cancer has a much better prognosis with something like a 60% five-year survival rate. After having a colon resection and the standard six month course of folfox chemotherapy, Rachel had a recurrence that involved metastases outside of her colon, throwing her into the ranks of Stage IV and all that that implies. Her metastases were treated with HIPEC surgery and more chemotherapy. We spoke about her HIPEC experience as I knew, even back then, I was definitely a HIPEC candidate. She told me a little bit about her family – she’s from Arkansas – and her government job in D.C. She told me about how she was on maintenance chemo and there was no evidence of disease and there hadn’t been for quite some time. She seemed well on the way to healing and recovery and was busy living a full life that, other than her biweekly trips to the infusion center for maintenance chemo, resembled the life of any single, vivacious 29-year-old professional living in a big exciting city.

Earlier this year, Rachel had another recurrence that led her to a surgery in June that was to potentially involve another HIPEC procedure. The surgery was aborted because there was cancer that the scans had failed to detect and that could not be removed. Since then, she’s had a difficult and long surgical recovery, has undergone radiation and was recently hospitalized for a month. It was in the hospital that she celebrated her 30th birthday.

Rachel was there at the Blue Hope Bash to personally accept the award, having just been discharged from the hospital two days prior. Looking pretty but frail and moving ever so gingerly, she demonstrated in person the grace and self-possession that I have always associated with Rachel. From our personal interactions and our interactions online through our Facebook support group, Rachel has always been so seemingly and incredibly matter-of-fact about her disease, so research-focused, so unpitying, so determined with her adventurous vacations to live life on her terms notwithstanding the cancer, so self-possessed in a way that suggested the agelessness and wisdom of her soul and belie her biological age. Even when writing the occasional update on her blog, she has always been remarkably restrained in expressing her emotions. For all these reasons, I was taken aback by the raw emotions in her video and it was those raw emotions that penetrated my cynical and cold heart. For a few seconds, Rachel let the world see how much this disease has hurt her, how much it has taken and will take from her, how much she hates it. That emotional expression was a great gift to me. That gift allowed me to feel human again for a time, to know that even after all of my own pain and hurt and my numb and cynical acceptance of the gross injustices in this life that befall me and others, I am still capable of feeling compassion and heartbreak for another human being, a temporary thawing of the ice inside. For that, I am immeasurably grateful.

After Rachel accepted her award and the nearly 300 people in attendance stood to give her a standing ovation, a pretty 30-something girl at my table, a journalist who was there to write about the event for The Washington Post, looked at me, still visibly shaken by the video, and asked, “But she’s going to be okay, right?” I looked at her like she was nuts. Then, she asked me, “But why? I don’t understand why.” The poor girl seemed incapable of grasping that someone so young and attractive like Rachel, like herself, could be so sick; it was as if her mind couldn’t come to accept this harsh reality that people her age are often spared, that in this modern world medicine still has so many deficiencies and that young people die.

I want everyone who reads this blog to understand that colon cancer kills young people, people as young and younger than Rachel. On Monday, Richard Provencher, the former COO of Chris4Life, died at the age of 34 after a two year battle with colon cancer, leaving behind 2 children, ages 2 and 4. I met Richard that evening. He looked very sick as he sat hunched in his wheelchair, the strain on his wife’s face palpable. Michael, the CEO of Chris4Life, told me later that he didn’t think Richard would survive another month. Michael was right.

I am more hopeful for Rachel. I must be. Please watch her video and join me in supporting her, in sending her prayers, thoughts and good energy, She is a true force for good in this world. I hope her life force will be here with us for as long as possible.

As Rachel said, this is a horrible, horrible disease. The other emotion her video sparked in me was anger, anger that this disease even exists and that it hasn’t been conquered by the wonders of modern medicine. Please consider supporting the cause so that a cure can be found, either through a direct donation for Chris4Life or a donation to my research fund (which was established with Chris4Life).

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4 Comments (+add yours?)

  1. Chrissy Rice
    Oct 29, 2014 @ 13:42:37

    Julie, I am praying for you and good results. Blessings for you and your family. You are so amazing and surrounded by the best medical team.

    Reply

  2. Jeanine
    Oct 29, 2014 @ 14:19:29

    God bless you Julie! And may God bless Rachel. Praying for you both and for a cure to this dreadful fucking disease.

    Reply

  3. lisa
    Oct 29, 2014 @ 15:11:28

    Julie, very touching video. For the record I do not think that your emotional response is a sign of your being cold. It is a psychological mechanism that enables you to cope with your illness and losses of others. We all use it to manage the pain.

    Reply

  4. Debbie whitmore
    Oct 30, 2014 @ 00:27:27

    Thank you Julie for always sharing your heart with all of your admirers. I love to read your new posts. Rachel’s speech is amazing. This disease is terrible, but with advocates like you, we will keep this disease in the forfront and work hard to eradicate it. I’m so lucky and proud to know you and our fellow fighters. I can’t wait to read your next updates.💚💜💙💗💝💛

    Reply

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