Fragility

I apologize for my long silence. I’m still alive, although admittedly, at times since my last post, I have felt barely alive and have wondered if this is what dying feels like. 

I started the clinical trial at Memorial Sloan Kettering, having been randomized into the trial drug (SGI-110) arm of the study. This required me to submit to a lung biopsy, a horrid experience that involved much unanticipated pain, three needle sticks deep into my left lung and coughing up blood.  In the interventionist radiologist’s own words – a man who has been doing this kind of thing for 30 years – it was a “tough” biopsy.  It’s a wonder my lung did not collapse.  Under the terms of the study, I was to have another two biopsies, but given how difficult the first one was, I have been released from that requirement.

The trial involves five straight days of a quick (but very painful) injection of the viscous SGI-110 drug into fatty abdominal tissue (although thawing of the five-day dose takes up to three hours once blood work is deemed acceptable on Day 1). Then, two days later, an old familiar drug, irinotecan, is infused over half an hour.  A week later, iriontecan is again infused, unless as was my case, blood counts are so low, it is not safe to administer irinotecan, in which case, it happens the following week.  Low blood counts are normal because SGI-110 has a highly myelosuppressive effect.  When I went in for my second irinotecan infusion, I had to wait forever for my blood test results because the lab had to manually count my neutrophils (a type of white blood cells) because there were so few, as in 0.1%.  Even the white blood boosting medicines (neupogen and neulasta) I was self-administering at home was not producing enough new white blood cells.  My red blood count was also decimated, leaving me with the kind of fatigue and exhaustion I have never known before, the kind where brushing my teeth sent me to bed. 

And so while I had tolerated irinotecan well enough in the past, its combination with SGI-110 left me questioning whether I could continue this trial. As a mother of two young children, I do not want to be so exhausted; I cannot be so exhausted.  I don’t want my daughters to remember me lying in bed for prolonged periods of time.  I am a person of great movement and activity; to not be able to engage in that same level of activity is a significant compromise to my quality of life for very questionable and dubious benefit.

After the second infusion of irinotecan, I started to dramatically lose my hair. Clumps of hair falling off effortlessly in the shower.  Massive amounts of my once beautiful hair on my pillow and every other surface of the apartment.  In the past, I have lost some hair, resulting in a thinning that was barely noticeable to those who knew me well and not noticeable at all to everyone else.  This time, within a week, I was at a wig store.  It was an orthodox Jewish wig place deep in Brooklyn, specializing in real hair wigs.  My children’s black, Trinidadian babysitter (who wears lots of wigs for fun) came with me for moral support.  Only in New York City would a Chinese and a black Trinidadian woman walk into an orthodox Jewish wig store.  I don’t know what I expected, but it was not what I saw.  The store was actually a hair salon, but for wigs, where women, in addition to being fitted for and buying wigs, bring their wigs for washing, styling, cutting and coloring.  The people were so kind and understanding.  It was a safe place for me to cry as I bared in shame my balding head.

I haven’t shaved my head, in large part because having some of my own hair (as little as there may be), helps to keep the wig in place. The wig, incidentally, is shockingly nice.  It looks and feels like my own hair (especially when I bother to spend the time to place and style it well).  If you didn’t know me, you would assume it was my real hair.

I’ve tried to tell myself that it’s just hair and that it will grow back. Other people have said the same things.  No, it’s not just hair and it may very well never grow back, depending on what treatments I pursue next, if any.  No one should minimize a cancer patient’s hair loss in that way.  My hair loss has been entirely traumatic and not in the least empowering.  I have no affinity with the cancer warrior proudly displaying her bald head, the simplistic and asinine image the media likes to propagate.  Much has been written about the traumatic effects of losing one’s hair as a cancer patient as well as part of the aging process.  For many, much of the trauma stems from vanity.  Some say hair loss makes it obvious to the world that they are sick.  Some mourn the symbolic loss brought on by age and cancer.  I find it hard to look at myself in the mirror without my wig on, never mind being seen without my wig or a baseball cap, even by Josh.  But why?  I’ve never cared much for how I look so vanity wasn’t a huge reason.  And being obviously sick to the world has never been an issue for me; if it were, I would not blog.  It’s been 3.5 years since my diagnosis so I think much of the grieving over my former life has been done.  And then it hit me the other night, as I showered in virtual darkness, in case I should catch a glimpse of myself in the mirror.  Seeing myself without hair is tantamount to looking at myself in death, and so I am afraid to look and I don’t want those who love me to look should they despair at my pending death.  It is to stare at my own mortality, to be reminded that death is not far, that its loss symbolizes the growing degradation of my body and, sometimes I fear, my spirit, their weakening in the face of this unrelenting onslaught.  Over the last 3.5 years, I have gradually been stripped of my strength and my defenses.  To stare at myself in the mirror now is to stare at death, to acknowledge and behold my own very human vulnerability in the face of death and all those other forces far greater than I, my own fragility.

I am so fragile now. I am that person who rushes to find a seat on the subway and slumps into that seat gratefully.  I am that person who wears a face mask in crowded places.  I am that person who suffers mysterious pain after pain.  I am the person who cries hysterically at what feels like the drop of a hat, like when the asshole of an interventional radiologist who was to do my lung biopsy happily proclaims that I have tumors “everywhere” in my lungs, or like when I get lost in the bureaucratic maze that is Memorial Sloan Kettering with as appointments are canceled without anyone telling me until I show up to check in for said appointment.  I find myself increasingly less able to self-advocate (although I must admit hysterically sobbing seems to get people moving really fast).  Often these days, I feel like the strong person I know I used to be is gone, just as my hair is gone, and that makes me so sad, so unbearably sad.

And yet somehow through all this fragility, this exhaustion and turmoil, I oversaw the completion of our 8-month apartment combination project, threw Mia her 7th birthday party in our home, went to my sister-in-law’s wedding in Charleston (the day after treatment), went trick-or-treating with the girls on Halloween (when I would have much rather lay in bed), threw a big 40th birthday party for Josh (although the caterer did much of the work), helped Mia prepare for her two violin solos during the New York City Marathon (she did beautifully and impressed the executive director of her music school — links are below to the videos for those who haven’t seen them), and cooked a 10-course Thanksgiving feast.

I wonder how I did and still do it all. How do I still manage to get out of bed every morning under the crushing weight of this life?  My children need me and I am a mother.  That’s a big part of it.  Then, there are the moments of pure joy, like when I laugh uproariously at one of my mother’s silly stories as she sticks her face into the phone or when my sister and I talk about our childhood memories or when I watch my children board the school bus as they venture into the world on their own or when Mia plays the violin with such poise and grace or when my Cousin N calls me every day on her drive to work to talk about our favorite TV show of all time and other silly things or when I get a text from my dear friend who also happens to have cancer, L.  I love those moments of pure joy.  I am addicted to those moments of pure joy.  I want more moments of pure joy.  And what they all have in common are the people I love, the people who hold me as I cry and help me clean and cook and think and feel and watch the dog and the kids and ask me how I am and how they can help, the same people who are helping me to not shatter into a million little pieces in my very fragile state and then if I do shatter, they pick up all the shards and help me put myself back together.  They are my family and friends, my unwitting strength even as I feel like I have none of my own.  You know who you are.

After I got out of the shower that night, I turned all the lights on in the bathroom, setting them to their brightest setting, and stared hard at myself, stringy ugly hair and all. As fragile as I am and as fragile as I may still become, I will always endeavor to not live in denial, to accept reality, including my own mortality and impending death, with grace and dignity and a strength of spirit that I hope cancer and the harshness of life can never take from me, in large part because of those family and friends who stand with me.  And do you know what I saw in the mirror?  As unexpected as it was, I saw me.  Me.  That’s all.

Videos of Mia’s NYC Marathon Performance:

Advertisements

15 Comments (+add yours?)

  1. Anne Marie
    Dec 01, 2016 @ 22:10:33

    Dear Julie, Your admitting to your fragility shows your strength, and you are beautiful, stringy hair and all. I love hearing about your trip to the wig shop with your babysitter – only in NY, indeed. I also am glad to hear you are still finding joy amongst all the pain (that biopsy sounds horrific!), and that your friends and family are surrounding and supporting you so well. I wish I were nearer, but know I think of you often and send my love.

    Reply

  2. The Astonishing FartMan
    Dec 01, 2016 @ 22:57:29

    Bravo, Mia!

    Bravo, Julie!

    While Mia was playing Hunter’s Chorus, about halfway through, it looked like the wind blew her sheet music to the wrong page, but she kept playing without missing a beat.

    Her mother’s daughter.

    Joy, Mia!

    Joy, Julie!

    Reply

  3. Barbara Gettelman
    Dec 01, 2016 @ 23:17:02

    Julie, in my long life of 73+ years I have never experienced a more moving, honest, brilliant, heart-breakingly honest, brutal sharing of one’s deepest despair. You are a gift to the world, a person who lives the most difficult life, not imaginable to many, with courage and fierce strength. I wish this had not become your burden but YOU are a person I will NEVER forget. You will give me courage when I face my hardest days. I would do anything for you and your family. I am sorry that last summer did not work out but don’t forget me in the future if I can offer anything.

    Reply

  4. Michelle
    Dec 02, 2016 @ 11:37:10

    Julie, thank you, thank you, thank you. For being the strong, brilliant, honest, fragile, witty person you are. Your words so eloquently and honestly lay bare your most intimate feelings. Those of us on this similar cancer journey know these same feelings…and, yes, sometimes we know we are losing our minds, and sleep eludes us as our thoughts twist and turn down the darkest roads. For now, each new day dawns with hope. You raise me up today. Thank you. Love.

    Reply

  5. Tyler Burton
    Dec 04, 2016 @ 08:55:37

    Thank you Julie for the continued sharing of your journey. I am so sorry that you are tired. A new word should be coined to discribe your tired. I loved Mia’s street solo. Her skills are so graceful. I look forward to more Mia solos. Anytime you want to use the rebuilt Cape house let us know. It is peaceful there in the winter months. Summer is open door policy. Plenty of space. Dog included.

    Reply

  6. tyler
    Dec 04, 2016 @ 09:08:51

    Dear Julie, Thank you for continuing to share with us your journey. I am very sorry that you are so tired. There should be a new word coined for how tired you are. I loved Mia’s street solo! Her grace continues to develop and it is joyous to watch and listen to Mia play. Our rebuilt Cape house is open to you, Josh and the girls anytime. It is so peaceful on the Cape during the winter. Summer is open door policy. Just let us know if you want to escape up there. My neighbor can let you in.

    Reply

  7. christine mccarthy mcmorris
    Dec 04, 2016 @ 17:50:58

    Dear Julie, I have been reading your blog, as a dear friend of mine has Stage iv colon cancer. I have to come to care about you and your family and your strength – which doesn’t always mean “being up,” – and your brutal honesty. I feel I understand my friend better, and try to get her to open up about some of what you have so eloquently communicated. Your children are infused with your spirit and they will love you forever. My mother has been gone for 25 years and I think of her every day. Those links are very very strong. Thanks & caring wishes –

    Reply

  8. Chrissy Rice
    Dec 07, 2016 @ 18:43:31

    Love you Julie, always…. just the way you are. You touch my soul with your reality and fill me with joy at the same time when I see that your children thriving.

    Reply

  9. Brenda Jacobo
    Dec 13, 2016 @ 09:55:15

    Good morning Julie! Just came across your blog after researching post hipec surgery recovery. I am 5 weeks out and struggling. I too have stage IV colorectal cancer. Thank you for putting it all out there and bearing your soul so others can cling to a real life fellow battle soldier in this fight. I will keep you in my prayers and hope to hear back from you!!💕

    Reply

  10. Darline
    Jan 02, 2017 @ 16:22:14

    Dear Julie,

    I think I can say that I somewhat get you. I am diagnosed with stage 3 colorectal cancer… although all my tumors seem to be in my baseball field. I take pain medication because all the tumors seem to be pushing in to my organs… I have two lesions and I’ve already done 16 treatment of one kind of regimen and now I’m on my 3rd treatment on the new regimen. I can only understand you so much. I have two babies Emma 4yrs and German 2yrs. It breaks my heart everyday that I can spend time with them the way I used to… I can’t pick them up or barely play with them. With my new treatment I feel like I’m dying. I’ve lost 20lbs and I can’t put the weight back on. I struggle with nauseous ever day and it’s horrible. But you are such a strong women and I admire you for everything because I’m only a year into this and I’m so ready to give up but my babies are everything and I guess that’s what keeps me going…. because I want to bad to just give up.

    Reply

    • Jeanine
      Jan 04, 2017 @ 12:57:06

      Darline,

      Please don’t give up. Prayers for strength and healing. That the treatment you are taking will get rid of your cancer. Hope, faith and all good thoughts. I hope you feel better. Look into turmeric and also coconut oil and incorporate both into your diet.

      Reply

  11. Andie Petersen
    Jan 04, 2017 @ 19:38:37

    Hi Julie,

    Happy New Year. My thoughts are with you dear stranger, friend. I hope your girls made you smile today.

    Hugs, A fellow survivor

    Sent from my iPhone

    >

    Reply

  12. slh
    Jan 07, 2017 @ 21:31:56

    Thinking of you tonight so I stopped in here to see if there was any update. Hope you are doing as well as you can be.

    Reply

  13. Shona
    Jan 20, 2017 @ 18:59:19

    I keep checking your blog & hope 2017 brings you better news all round…

    Reply

  14. The Astonishing FMan
    Jan 21, 2017 @ 00:44:50

    I was just reading your Facebook post about your food battles with Belle. It reminded of my mom, except my mom was just an okay cook. Some of her specialties were delicious. Some things she prepared weren’t very good.

    Both my parents grew up in dire poverty during The Great Depression and the family was still quite poor when I was growing up: wasting food was a sin. My mom was also pretty strict and didn’t take any nonsense from kids. Mom was of the generation that thought canned food was the most wonderful thing. I think they loved canned food because, having been half-starved as children, food in tin cans was something that could be hoarded away almost forever as a precaution against leaner times.

    I’ve never been a picky eater (as my present bulk attests), but my older brother was picky. I remember many times my mom would not let him leave the table until he finished his last bite of tasteless canned peas or tough-as-leather round steak. Unlike Belle, who is honestly stubborn about her refusal to eat, after a while my brother become very sly. If there was something he didn’t want to eat, he would secretly pass it to me or my sister to eat. And if we didn’t want it, he might put the unwanted food in a paper napkin and stuff it into his pocket.

    One day my mom noticed a horrid odor coming from the laundry hamper, which was the result of a discarded salmon patty rotting in my brother’s pants pocket. Fortunately, by the time she located the cause, the salmon patty (made of course from canned salmon) had decomposed down to an unidentifiable mush. When mom confronted him, my brother made up some barely plausible lie about having found the small carcass of a dead animal that was so fascinating to a little boy’s mind that he put it in his pocket to show to his friends later on, but then forgot all about it. I suppose the tale was plausible because boys are likely to do such things with dead animal carcasses.

    So be thankful, I suppose, that you have a stubbornly honest girl who defies you openly and head on, instead of a sneaky boy like my brother who learned naughty lessons in trickery that he still practices, with slight variation, even until today. Well, he does not stuff food or dead animals into his pockets anymore, but I bet he does try to cover up some of his other inconveniences and indiscretions.

    You will not believe where I am right this minute. I’m in the hospital, by my father’s bedside. Two days ago, he start passing blood in his stool, and the doctors have found a large tumor growing in his transverse colon. He will have a partial colectomy surgery at 9:30 in the morning. The docs are hopeful it’s confined to the bowel. I’m worried that he might not survive the surgery, because he has some other serious health problems, but the surgery is absolutely necessary or the blockage will kill him. In six days, I’ll be back at MD Anderson for my semi-annual scan, which will make 5 years since my last recurrence. I guess one advantage now, is that I’ve been through the cancer mill, so will be able to help shepherd my dad along the way. And last month, my older brother (the one who liked to put food in his pockets) was diagnosed with lymphoma–Stage I, so his prospects are “good relatively speaking.” I’m feeling numb right now from all the cancer lunacy, and that all-too-familiar numb feeling reminds me that one never completely gets over the numb confused feeling that cancer adds to one’s existence. The mind goes numb because the reality is too distasteful, but then you try to shake off the numbness because you don’t want to miss a moment of delicious joy even if it means you have to swallow the bitter pains of living. You can’t hand the emotional pain off to someone else, and you can’t wrap it up and stuff it in your pocket to slowly rot. You face it with stubborn honesty.

    If I have to eat the pain, I will, but I will stare it down for as long as I can before I have to eat it.

    Now, as you see, my little story has become complicated and confusing. My metaphor is all mixed up, and doesn’t exactly fit, yet I do wonder if there is something beautifully complicated in Belle’s stubborn refusal to eat and in the way you respond to her, and in the way she responds in turn. Our “relationship” to food can be a complicated expression of how we are dealing with all the other things in our lives. She does not want to lose her mother. She wants to try to keep you here. Maybe her stubborn refusal to eat is her way to not let you go or to try to make you stay.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: