Farewell My Friend

I have to pause yet again in my storytelling to share another hard cold reality about life with cancer. And that is that when you yourself have a life threatening chronic disease and you choose to find support from those who understand your disease and what it feels like to always live on the precipice, you will inevitably meet others who have your same disease, especially in this world of social media and facile information. You may even come to call some of them friend as you become emotionally invested in their well-being and their destinies in a way that goes well beyond the limits of a human compassion that you might feel for someone you don’t know or know only superficially. You call them friend whether you’ve actually heard their voices or looked into their eyes, because they remind you of you, because they are the same age, because they love their husbands and would lay down their lives for their young children, because they exemplify a strength, beauty and grace that you wish you had. And some of them will die because your disease kills, slaughtering mothers, fathers, brothers, sisters, sons, daughters and friends. And you will mourn. And you will burst into tears upon hearing the news of their death even though you knew it was coming (although maybe not so soon) and you will hug your precious three-year-old as she sits on your lap in your tearful grief and she who has always had an uncanny and other-worldly sensitivity will ask you, “What happened, Mama? Why are you crying?” And you will tell her as you hug her even more tightly, “Mama’s friend died, Isabelle, and Mama is so so sad.”

I am so so sad because my friend, C, died yesterday morning after a nearly two-year war with metastatic colon cancer at the too young age of 42, leaving behind her husband of 15 years and three children, ages 11, 9 and 5. Since my diagnosis, I have known others who have died from colorectal cancer, but none of them I would have called friend. C was different. I wanted to write something on her Facebook page or Caringbridge site when I learned of her passing, to vent my grief, to honor her and to perhaps console those who loved her best, but I couldn’t. There isn’t enough space on those forums for me to convey my complex emotions about C, about her loss, about what it feels like to lose a friend and comrade-in-arms in this vicious war which I and so many others must now fight without her by our side.

I knew I would write a post on my blog about her; after all, this blog is how I came to meet C and one of the principal ways in which we shared our hopes and fears.   C introduced herself to me last September after she’d begun reading my blog through a private message on Facebook (the first of many exchanges between us). After that, I also followed her goings-on as well as her thoughtful musings through her Caringbridge site. C was a good writer, and through our respective writings, we recognized in one another similar sensibilities, a similar strength and resolve, a similar appreciation with respect to the seriousness of our situation for self-awareness, honesty and a hope based on reality, as well as a similar faith in love and, despite our common misfortune, in the goodness in the universe. I also respected tremendously C’s forthrightness – not unlike mine – for she took issue with something I once wrote and addressed it with me in a blunt yet kind manner. We would also occasionally say things and ask questions reserved only for those of us who live with this disease on Colontown (an online support group accessible only through Facebook) and the Colon Club (another online support group). Through all of these internet-based outlets, C and I kept track of and grew to know one another. Although we never met in person or even spoke on the phone, I came to care about her, and I think she also came to care about me.

C was diagnosed nearly a year before I was with Stage IV colon cancer that had metastasized to the peritoneum and various other places. We both had HIPEC surgery several months ago, two weeks apart, it was her second time with HIPEC and the first for me. We commiserated about our difficult surgical recoveries. She was only four years older than I. She had children who are a little older than mine. She was educated at a liberal arts college in New England in the 1990s just as I was. So I looked to her as someone who, in addition to sharing my sensibilities, had already traversed the difficult road I was embarking on, someone who could also understand my greatest fears and sorrows around this disease, namely those that involve my husband and children’s suffering.

Over the last couple months, C’s posts on the various internet-based outlets had gotten more and more infrequent, but she did post enough to let me and others know that the cancer was progressing quickly, more quickly than she had expected. While folfox had worked for her, her tumor biology did not respond to folfiri (the treatment I am currently on and which is considered to be, with folfox, the conventional and most effective first line chemotherapeutic defense against colon cancer). While her first HIPEC surgery had been a tremendous success, granting her four blissful months of NED (no evidence of disease) status last year, the second HIPEC surgery was not successful, revealing widespread metastases that had not been detected by scans and which in part could not be excised. I was devastated to hear that news and because I inhabit the world of colorectal cancer with her, we both understood what that news meant. The progression of the disease after the surgery was shockingly fast and painful. There was no time for clinical trials, not even time to really try second and third line treatments; pain management was the priority.

A month ago she posted on Four Corners (a subgroup of Colontown that is exclusively for those of us who live with Stage IV colorectal cancer and where we can freely and safely say the things that would terrify those who live with a lower staged cancer) about what it was like for her, as per their therapist’s suggestion, to sit in the next room as her husband and sister-in-law told her children that the treatments were not working and that their mother would likely die from this disease, to hear her children’s cries and not be able to comfort them (for that heartbreaking task had to be left to the future caregivers). I, like everyone else in Four Corners, cried for C that night. And yet, true to who C was, she found goodness in the events of that evening. She acknowledged how her home was filled with the support of family and friends and that with that conversation there were no more fears and questions, and henceforth, they could focus on loving one another. C turned what for most would have been a nightmarish event into something of beauty, a true testament to her courage, strength and grace.

For whatever reason I sent C a personal message on Facebook on July 17, after a six week silence between us. The silence wasn’t because I hadn’t been thinking of her. In fact, I thought of C often and wondered how she was doing. I just didn’t know what to say and felt that anything I would say would be trite. But on July 17, I decided to make my trite statement anyhow, that I knew she received a lot of messages but I just wanted to let her know that I was thinking of her and her family and that I hoped she was doing well under the circumstances. Two days later she responded to my message in what would be her last communication to me. It read, in part, “Thanks Julie. Last summer I was where you are and loved every second of my life. I truly believe you are one of the people who will survive this. And work hard to find a cure.” That was C, always so supportive, even as she teetered on the precipice.

I’m glad I followed whatever compulsion it was that led me to reach out to C on July 17, even though I had nothing helpful to say, because on July 21 she was admitted to the hospital, where tests revealed liver failure. On July 25, at her request, her husband brought her home to hospice care so that she could be surrounded by her family. I learned that C had been brought home to hospice care, on July 26, this past Saturday. Many live for weeks, if not months, while in hospice, often in a pain-free state, and that was what I assumed and hoped would happen with C. That night and into the morning of July 27, I dreamed of C, all night it felt like when I woke in the morning. I never remember my dreams anymore, and I couldn’t remember the specifics of these C dreams either, but I knew she had filled my mind in my sleep, and not in a bad, forbidding or frightening manner; she was just there in a comforting way. When I woke, the thought crossed my mind as to whether she was going to die soon. (I assure you I’m not one to have dreams that foretell the future or that otherwise have any bizarre unnatural quality.) An hour later, when I picked up my iPad to check Facebook, I saw that she had passed earlier that morning.

I think C came to me in my dreams to bid me farewell in the only way she could at that point. I think C came to me in my dreams in her selfless and loving way to give me hope (something I’ve not always had), to reinforce the sentiments she expressed to me in her last message to me even as she was dying, the belief that she has always and repeatedly expressed to me that I would be cured and that I would go on to help find a cure for this horrid disease. I like to believe that she came to urge me to keep up my personal fight so that I can be in a position to rage against our common enemy in the more important global war, to find a cure for this disease, so that her beloved children and mine (who are at greater risk for developing colon cancer) and the millions of other children in this world who are also at risk, will be safe from this disease. This is what I choose to believe.

C’s death comes on the heels of a rash of deaths in Colontown and the Colon Club, at least ten I think within the last two months; there are more people whose time is imminent. It’s hard to hear about death after death after death. After the first couple in this recent spate, I admit I became a little numb, toughened (although I always knew that C’s death would hit me hard); it was like I was saving all my emotions so I could feel it more deeply with her passing.  Obviously, any death is tragic and sad because of all the unfinished living and pain for those left behind that it implies. But when those deaths are brought on by colorectal cancer, there is terror for me in addition to the sadness. I will be honest and say that C’s death, together with all the other deaths I have witnessed from this disease, makes me afraid for myself. It makes me wonder when I will die, whether my final days will be filled with horrible pain, whether I will have time to do, say and write all the things I want to do, say and write before it is too late. It makes me afraid of how my death will hurt my husband, children, parents and siblings. I wonder if I would want to die at home and have my husband and children witness death in all of its blatant ugliness and elusive beauty. It makes me acknowledge the fear that I have in leaving this world – not because I am afraid of death itself because, unlike some people, I have no fear of what awaits after this life. Rather, I am afraid that Josh will not find someone else with whom to share his life, but I am also afraid that Josh will find someone else with whom to share his life and that I will no longer be his one great incomparable love. I am afraid my children will be forever scarred by my death; I am afraid my children will forget me or, worse yet, will know nothing of me and have no interest in knowing who I was. I am afraid, unlike sweet C, no one will write kind words about me on my Facebook page and that they will say only the perfunctory things people are supposed to say about the dead. The death of others makes me think about all that I would miss out on, from something as mundane and trivial as trying a new recipe to finding out the eagerly awaited conclusion of the Game of Thrones saga, to the more heartbreaking, like watching Mia walk down the aisle. This past Saturday as we were strolling past a bridal shop, my almost-five-year-old Mia pointed to the gown in the window and declared that that was dress she wanted to wear when she got married; I responded under my breath, “I hope I’ll be around for that day, Sweetheart.” I’m afraid that I will miss weddings and graduations and grandchildren and trips to all the places I’ve yet to visit. I’m afraid I will miss out on seeing who my children become. I’m afraid that no one will teach them the lessons I would have taught them. I’m afraid that they will never know things about themselves that only I, as their mother, know. There are so many many fears. During periods like this when so many are succumbing to the disease, it feels like fear and death surround me.

More than once I’ve cried to my therapist about C’s pending death or the plight of the other mothers of young children I have come to know. In those moments, it feels like fear and death might choke me. My therapist tells me then that this is the downside of support groups, that maybe I should take a break from them for a time. No doubt, the informational and emotional benefits of being part of a support group can be helpful and even serve to prolong one’s life. But what happens when the inevitable deaths are terror-engendering?

For me, knowing C, witnessing from afar how she lived this past year and then how she died, while frightening at times, made me better understand how I want to live and confront my death. She taught me through her example what it is to face death with courage, grace and dignity. She did everything within her power to fight her cancer. And then she did everything she could to prepare for her death (e.g., conveying her wishes for her children).  And everything else, she let go and put her faith in her God. And within those many moments of letting go of what she could not control and embracing faith, particularly when she was free of pain, she lived and loved fully and deeply. She rejoiced in the smallest tasks like packing school lunches or picking her kids up from school. C was all about loving and enjoying the most ordinary of activities, about savoring every second with her family – I admit I could definitely use C’s help in learning more patience with my kids and enjoying those moments when they’re misbehaving. Her disease progressed at a frightening speed and while I fear the same for myself, that fear reminds me to control what I can and let everything else go.  I’ve set in place my estate planning.  I’ve told Josh what I want done with my body when I die.  I’ve told Josh what I want for him and our children.  I’ve spent hours pouring my heart and soul into this blog so that my girls will know who I was.  And then the rest of the time, I try to live thoroughly and completely in the here and now, to take a hedonistic pleasure in the simple moments of riding in the car together as Josh drives into the setting sun, in the ritualistic and effortless process of loading and unloading the dishwasher, in lying next to Josh at night and watching the newest episode of Selling New York on HGTV. There is so much to cherish in the everyday.

I have always said that no matter the physical outcome of an individual’s war against cancer, victory is ultimately determined by the outcome of the war on the psychological front, whether she is able to live and love and laugh with abandon before the specter of death. In my mind, C lived and loved and laughed before the specter of death with a light and smile like no other. Farewell, my friend. You are to be commended for how you fought your war. Thank you for all you have taught me. Thank you for believing in my ability to be cured and for giving me hope. I and others who have fought with you will carry on to find the cure you so desperately wanted. I will miss your words of support but it gives me great comfort to know that your children are surrounded by love.  It gives me greater comfort to know that you have slipped the surly bond of earth to touch the face of God and I know you are soaring high amidst unimaginable beauty and peace.

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9 Comments (+add yours?)

  1. Katie
    Jul 28, 2014 @ 20:02:08

    Beautiful.

    Reply

  2. Debbie Whitmore
    Jul 28, 2014 @ 20:35:31

    Beautiful tribute Julie. Carlyle couldn’t ask for a more beautiful tribute in her honor. Stay strong. You are one of the lucky ones, just as she said. We need you to fight for us. Xxxooo

    Reply

  3. Faith
    Jul 28, 2014 @ 20:50:16

    Julie, this is beautiful, and also heart wrenching, and it brought me to tears. You and Carlyle are heroes.

    Reply

  4. Jeanine
    Jul 28, 2014 @ 21:44:09

    Julie, you are beautiful♡ Prayers for you.

    Reply

  5. Maia
    Jul 28, 2014 @ 21:47:55

    Oh Julie… my heart is breaking with you. I also emailed Carlyle on July 17th, after one month of no emailing. We emailed during 3 months, always short emails, to the point (she was looking for and *found* an immunotherapy trial). It felt so comfortable, so right -there were no pleasantries in our communication, there was not time for them. However, I always felt like talking with someone I knew since long time ago. Thank you, for letting me know a bit more of Carlyle. I loved her, I love her.

    Reply

  6. Allison Thompson
    Jul 28, 2014 @ 21:48:59

    Julie, this is such a beautifully written tribute…to Carlyle and to all of you that have to carry this tremendous burden. I am Carlyle’s cousin and I will be praying for you and your family as you fight this fight so bravely. She is – no doubt – soaring high amidst unimaginable beauty and peace. Beautiful words.

    Reply

  7. Paulina Tawil
    Jul 29, 2014 @ 07:03:39

    Julie, this is beautiful. Carlyle was truly a person who could offer support no matter what. You too are a hero. I was Will’s teacher last year. She taught me more than she ever knew. My prayers are with you all who fight this horrible disease.

    Reply

  8. Nilene Evans
    Jul 29, 2014 @ 08:12:06

    Julie – I have read this blog ever since Broc R. mentioned it in his blog. Your words are beautiful, thoughtful and deeply moving. We have a family member with colon cancer as well as other cancers in our family. Your blog demonstrates how the internet draws people closer to each other even when they do not physically touch. You are often in my thoughts and I am rooting for you to survive and thrive with Josh and your girls.

    Reply

  9. Kit Grady
    Jul 29, 2014 @ 12:49:26

    so beautiful and loving. Carlyle knows and smiles down on you. Thank you for letting me into such a sweet tribute. You give such strength to me.

    Reply

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