Weekly Update #66

In the past two weeks I took all the doses for round three of this oral chemo, Lonsurf. I am so incredibly glad to be on the other side of the active part of this round; it was a tough one. I was really nauseous and we began to work our way up the anti-emetic ladder. Continual nausea is so demoralizing. I was picking between eating or drinking most of the time, my body didn’t have room for both. It is such a relief to just drink when I’m thirsty and not regret taking more than a sip.

In past cycles this week is when the sleepiness is strongest. I have already taken a nap today and wouldn’t say no to another; we’ll see how I handle the week. My daughter and I did more walking last week – we went out for physically distant visits with friends where we chatted from opposite ends of the lawn – and I think that helped with my energy levels. So I’m going to try to put forth the effort to make that happen again this week, hoping that the act of doing it makes it easier.

I have some big cancer-related COVID-times fears that I want to talk about. It’s intense stuff related to my death, FYI, if that’s something you want to skip, avoid the next two paragraphs.

I am really scared that I will die during this quarantine. I believe the estimates that we might be only 1 month into 18-24 months mostly at home. I’m 1.5 years into an estimate of having 3-5 more years to live. The math includes an uncomfortably large overlap. I have had the benefit of time to make plans for the end of my life, and they include traveling to see people and definitely getting to hug those I care about again. It is incredibly sad to imagine not getting to mourn with the people I planned on mourning with.

And here is the other, selfish, fear I have around dying during this quarantine. I am afraid that my death will matter less to people, due to the pandemic that surrounds us. I always imagined my death being one of those things that makes people go home and hug their children tighter, a senseless loss. But we’re having thousands of senseless losses each day due to COVID-19. Won’t it numb people? How can it not? I feel like dying now would make me a small name on a long list, and nobody’s death should feel that way.

I hope everyone continues to stay safe and healthy.

12 thoughts on “Weekly Update #66

  1. Thank you for sharing your deeply vulnerable thoughts. I only know you virtually, but you matter. Your life matters. Everyday, I hug my kiddo tighter because of you.

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  2. Thank you for your continual honesty and humbleness. This pandemic has made all of us humble now. But as the commenter above said, you do matter, and even more now, and every day even more for your family. I was so thrown by it all today I made my husband write down my fried chicken recipe in case something happened to me – and yes, dinner was good!

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  3. I lost my brother unexpectedly in December and it broke my heart because I feel that he died before he had a chance to be truly happy. Anyway he lives on with me. Because he belongs to me. As you belong to your family and friends. And your neighbors. And the doctors and nurses who have taken care of you over the years. As you belong to us. Those of us who may never have met you in person but who have followed your journey. I think wanting to not be forgotten or lost in the shuffle is such a human thing so don’t feel selfish for feeling that way. Love to you.

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  4. This post spoke to me so hard. I’ve been trying to craft a response, but the words are sticking in my throat. I’ve felt very tender for the last few days and I’m afraid if I don’t just write and let you know that you are not alone it won’t happen.

    So, there you have it. I have nothing profound to add. Hold yourself and those you love close. Know that even if things don’t pan out the way you’d hoped, your value to all of us is not diminished. In fact, it might be enhanced because those who love you will have to long for you even more because they didn’t get to hold you one last time.

    Liked by 1 person

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