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Hope, love, and community

The last 2 days have been up and down. Monday night was rough. I slept well for about 4 hours until I had a COVID pneumonia coughing fit. Whenever this happens, my oxygen levels drop, heart rate (HR) skyrockets, and it takes me a long time to recover. The oxygen tube in my nose was making weird noises, nurses came in to draw blood and change medicines, I had more coughing fits, etc. So I never got back to sleep. However, throughout the day my oxygen levels and HR improved and I started coughing less. I've been spending most of the day sitting up in a chair. 

My brother came to visit and shared funny pictures and videos of Maya (their dog has, shall we say, creative ways of expressing her crushes on male dogs in the neighborhood), as well as some old family photos he recently received. Leland and I also had a brief Zoom call with our pastor last night. My friend Alix visited today and Leland and Lily will be here tomorrow. Thanks to my friends and family in the DC area, I have visitors lined up for every day of the week. 

Living a teenager's dream: wearing the same thing day after day and no bathing, face washing, or grooming for 4 days (me, not Jonathan). 

The infectious disease doctor stopped by yesterday to say they would put me on remdesivir. That started yesterday and will continue for 5 days. They still don't know whether it's a COVID reinfection or delayed effects from COVID I had early in July. The latter seems more likely, since I've had four negative antigen tests between July 7 and Sunday. Only the PCR test from Sunday was positive. 

An effective therapy for COVID patients is to lie down on your stomach (proning). Amazingly, this position gets my oxygen level to 95-100% (still with supplemental oxygen) and HR to near normal. I did this today and yesterday afternoon and also slept on my stomach last night. I slept much better. The doctor was very pleased with the results and said my lungs also sound clearer. My coughing has subsided. They turned the oxygen down from 100% for the first time and I'm holding steady with saturation above 90%. I'm no longer on heparin IV; instead they're giving me a blood-thinning injection. 

Despite these good signs, it is hard to keep my spirits up. Within 24 hours I went from walking and biking 15,000+ steps/day and going about my daily activities to being on supplemental oxygen 24/7 and being unable to move from my bed to a chair without having to catch my breath (although it's getting better). I don't know how long I will be here or what my life will be like when I return home. Will I be able to walk around the house? Climb the stairs? Walk up the block? I have no idea. A helpful case manager stopped by to say that they can make arrangements for things like supplemental oxygen, occupational therapy, various therapists who will stop by the house, medical transportation, etc. It's good to know these resources are available. 

~~~
Last month my brother sent me a link to a video of Anne Lamott interviewing Katie Bowler, a 30-somthing divinity professor at Duke who was diagnosed with Stage IV colon cancer and wrote a book called, No Cure For Being Human (and Other Truths I Need to Hear). Here are some things that stood out to me:

“Uncertainty is a kind of grief.” [This resonates with me so strongly.]

Anne Lamott: “Going through a life-threatening illness is like getting a new set of prescription glasses where everything is in sharper focus. What realities have come into better focus for you?”

Katie: She was living in a fuzzy middle-distance: there was always stuff she was going to do. Now she finds that she can plan in 3-month stretches. [I'm at the 1-day stretch at this point. I can't make any plans for the future right now.]

Anne: Do believers need to have hope?

Katie: She was so angry about about hope. Hope felt like a kind of poison, the way people were using it with her, as if all of the promises of tomorrow would balance out the problems of today. "'I want the smell of my son’s skin, to ever finish a 5K. And I’d like things now, thanks.' For a long time I was really resentful about using the language of hope. As Jesus’s people…we are required not just to have courage, not just to have the ability to face down the reality of today, but to believe that we are being drawn into a story about love that is not ours, that belongs to all of us. And that forces us to be people of hope. I think I just had to give up on the idea, though, that hope meant that my life would work out. That story is about us, and not just me.” [I love, and am challenged by, how she links hope to community; hope doesn't mean that I personally will be fine, that everything will turn out ok for me. I have experienced how my extended community has drawn me into a story about love. Side note: we will know more concrete ways our community can support us when I return home.]

Anne Lamott: We go from hoping that this or that will happen, that all will be well, that all things will work out. We move toward hope in community, what Martin Luther King called the beloved community. The hope that when all else is gone, we understand that we were made out of love, for love, to love. That’s what we put our hope in. 

Katie: Many people when given a fatal diagnosis will make a bucket list of things they want to do. It is much easier to count items than to know what counts.

Comments

  1. I have found great wisdom and inspiration in Bowler’s writing. I dearly wish I’d found out about her before my neurosurgeries. I hope you find as much strength in her honesty and faith as I do. I continue to pray for you all day and night. Esther, you are surrounded by love. BTW, caregivers do sacred work—experienced that first hand. You take care. 😷

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    1. Thank you, Leah. I appreciate your faithful prayers. I'm looking forward to reading Bowler's book.

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  2. Esther, lovely thoughts from Lamott and Bowler--much to reflect on. In the meantime, we keep sending you healing thoughts and look forward to having you home soon.

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    1. Thank you, David. Yes, it was a very thought-provoking interview. Can't wait to be home with my peeps.

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  3. Thanking God for these concrete indicators of healing! Thank you for this update and writing about how you are living out and grappling with what ultimately counts... faith, hope, and love in Christ.

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    1. Thank you, Irene. I really appreciate your prayers and visits...and it looks like I'll still be here when you get back.

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  4. Thank you, Alisa. Can't wait to see you.

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  5. I don't always know how to respond, how or what to think, what to say... I read each of your entries. I laugh. I cry. I live the comments from others and your ability and willingness to share this moment in your life. You three are always in my prayers. Wishing you more and more better moments.

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    1. Aww, thank you, Nicky. I haven't even discussed bed pans and the "bedside commode" yet. Good thing I have a dark/dry sense of humor... Alisa is coming to visit on Friday! Wish you could join us. Maybe we an zoom.

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  6. I was thinking of Kate Bowler in connection with you and your diagnosis. Her work has been so meaningful to me, and I’m glad you found her.

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    1. Thanks, Shannon. I'm hoping to read her book(s).

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  7. Esther - thank you for sharing your posts so that we can keep up with your progress and have ideas about how to be supportive. It is reassuring that you have good care. I know it isn't the same thing -- I had a number of shoulder surgeries and then last year a lumpectomy last year followed quickly by a lower back injury/recuperation (the lumpectomy turned out to be benign but it took a few surgeries to figure that out) -- I was so surprised when those illnesses/treatments happened back to back, how quickly I felt weak. One of the hardest aspects of it is the loss of control and going from being active to not feeling well with slight exertions and also the loss of control with making healthy lifestyle choices and random things happening anyways. I admire that you are strong, logical, determined, positive and have a strong faith - those qualities will help guide you and strengthen you. You are in my prayers every day. Sue B.

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    1. Yes, the loss of control is hard, as is the total loss of physical activity. Thanks for your support.

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  8. Esther, Even though I've walked a few steps in your shoes with my cancer and with Larry's Stage 4 Glio, your courage and honesty is overwhelming. I have no doubt there is a bright light at the end of your tunnel, and part of that light will be the beautiful daughter you are raising. I took Lily for her German test yesterday. I never cease to be amazed by her grace and maturity, but then she has a wonderful role model. My thoughts are always with you, and I can't wait for you to get home. xoxo

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    1. Thanks so much, Marianne. We are so glad to have you as our neighbor and appreciate the rides and other help you are giving.

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  9. Sending good thoughts your way! - Will

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