Wednesday, March 15, 2023

Third Line Failure

Yesterday, I learned that my third line of treatment has failed. It only worked for about 3-4 months, and during the last two months, the cancer must have been growing. The drug (Trodelvy), which was just approved for breast cancer last year, held tremendous promise, and I hoped to be one of the small percentage of people to ride it to remission. Now I'm left wondering what is left. How many lines of treatment do I have left? Maybe a few more? Maybe a handful? And of those, which will work? And for how long? 

As with the first and second failures, I feel panicked for my family, for my children who may grow up without me. I do the math in my head. If the doctor who gave me my original average prognosis is right, my children will be 15 and 13 by then. I am grateful they will be older, not in the throes of toddler years or even younger. But I'm greedy.  

I don't want to leave my family. I don't want to exit early. I want to see my children go through the awkward teenage years and experience unnecessary drama over short-lived romance. I want to help them decorate their graduation caps. I want to help Skye when the messy period arrives. I want to advise them with college choices and majors.  I want to know what they look like when they're adults. I don't want sensitive Tyler to withdraw even more into himself. I don't want them to face the world with this punch in the guts. I want to grow older with Jeff and help him if he gets Alzheimers. 

I feel trapped in an incomprehensible maze. Why is this happening? What is this? How do I make sense of this? And then I realize that I'm asking the wrong questions. Somehow, we have convinced ourselves that mortality and sickness are exceptions to the rule. But they are all around us. I am surrounded by sick people these days, at the hospital, on Facebook, in the stories I hear. I am hyper-aware of death. 

In my mind, I determine to accept my fate. Somehow it feels like that will be easier than hoping for an unusual exception to the average. I have stage 4 triple negative breast cancer, the most aggressive breast cancer. When I asked for my prognosis, my oncologist told me, "Three years on average, maybe five. We're not talking about a decade." I've already lived a year and a half since I was told the prognosis. 

Maybe this is how it goes. Treading water until something big comes unexpectedly. I've spent the past year and a half just trying to function daily, swimming out from the drowning sensation of chemo. On the good days, I've met with friends, cooked for the family, and traveled. All I want to do these days is hang out with the kids and feed them. 

I have a lot to do. I still have not made my children's baby books. Or Jeff’s and my wedding book, although we have the most stunning photos. I want to make a book of my children's artwork from pre-school on so that they have something to remember when they finally throw out the over-stuffed bin of all the art work I painstakingly laminated. I think about buying presents for their future birthdays for when I'm not here. I am writing a blog for the kids so I can communicate with them from the past. 

I wish I could take time back and go back to when they were 2 and 4. I would hug them over and over again. Do whatever I could to stretch out the days, instead of lamenting having to hang out and feeling so impatient for my own career. I miss the days when they were infants and I could sit with them in my arms as they nourished themselves. 

The good thing is I still can. I sit next to them when they do their homework. Lurk like someone who has nothing better to do. I bring them snacks and cut them fruit. I bring them cups of juice even though I used to restrict their sugar intake. As my nurse told me when she found me crying in the ER when the cancer returned, "You're still here. You're still here." 


10 comments:

  1. Shinyung, as someone who knew you for that momentary time when your kids were 2 and 4, I can say that as an observer you were so ever-present and supportive in their lives. You always hosted the playdate, you were the room mom, you created and took Skye to dance classes…on and on and on. Your world has always revolved around them, and your own ambition doesn’t change that. It was a joy to know you as a mother at that time. The time we have is never enough, but from my view you always made the most of it- even when you weren’t facing this horrible disease. Sending you love and light always.

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    1. Thank you for your note, Lindsay. I really appreciate this perspective and being reminded of our days when the kids were younger. Thank you for the reminder and for being there.

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  2. Lindsay Stevens (comment above)

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  3. Dear Shinyung, as I read your story and think about you and your family I feel sad, angry, helpless...but also I feel a profound admiration for how in the in the middle of all these you are thinking on ways to be present for them in the future. I am reminded on how a mother's love goes beyond life. Hugs, Eunice

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    1. Hi, Eunice, thank you for sharing. I love that thought of how a mother's love goes beyond life. I'm going to hang onto those words. Thank you.

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  4. Shinyung, I’m so very sorry to hear this…my heart goes out to you and yours. And as eloquent a writer as you are, your presence, mind and heart come through even more clearly in real life. That was true when we met in 1989, and I have no doubt it’s true today. Your kids will feel your love, no matter what.

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  5. Shinyung,
    I am praying that you are healed, but if that is not God's will, know that you are not leaving your children alone. God will be with them. In your absence he will show them the way. He will guide them, love them, instruct them, and heal their broken hearts.

    Your love and your presence will always be a warm and nurturing memory for them to access when they need to. God will remind them of your sufficiency, of your ability to love selflessly.

    I think it would help you to write letters to them for their future. For their high school and college graduation days, for their engagement and wedding day. For the birth of their first children. Do not worry about laboring over the words. God will help you. May you have peace, be filled with love and emotional healing, and may God give you a peace that surpasses all understanding regarding your children and your husband and their futures.
    Love,
    Pam

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  6. I’m so sorry to hear about your prognosis. You are doing a great job of staying strong and living in the present for yourself and your family. I love that you are writing a blog for them. I pray that you will be able to see their graduations at least. And the doctors are not always right about their estimates. Keep planning to be ready for the worst but stay positive and don’t give up hope. Thank you for sharing your update. ❤️

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  7. Shinyung,

    I am truly sorry to hear about the prognosis, and can understand the emotional toll it must take on you and your family. I pray that you and your family are getting through this, and are cherishing every day that you have with them.

    You are an amazing writer and person, and to be able to convey your emotions so clearly is so admirable. Your love for your family and wanting to take care of them and be there for them even when you are gone is so touching and strong, and I know and feel that that love will turn things around. Keep being positive - you are an inspiration, and know that we are all pulling for you.

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  8. Hi Shinyung, as someone who you knew when you were Christine, I am sad to read this piece. I feel Ike our lives have been running in parallel on this planet. As young women at Chicago, our lives stretched out before us in innumerable and infinite ways. We’ve both had disappointments and triumphs and experienced the joys and lows of motherhood. I am thinking of you as I read your most recent FB post in the ER with a clot and pleural effusion. You have the wonderful Jeff by your side and your kids wait for you at home. Much love, Sarah

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