Sunday Afternoon

We need to share with you the reality that things are not so good here. After some time in which it seemed every day Ellen was getting better, we have been on a downward trend now for a couple of weeks.

Ellen now feels bad much of the time.

She now has considerable difficulty drinking enough water to stay hydrated, or eating enough to stay nourished and maintain her energy level. She has had to go to the Cancer Center to receive intravenous fluids. She is again losing weight, and suffering from nausea. She is very tired much of the time. Her discomfort kept her awake most of last night.

She is doing her best to walk, but lately it is not long walks in the hills with a lot of up and down. It is more walking on the flat down to the mailbox and back. But she does it, with determination.

We honestly do not know what is happening. We have had multiple doctor visits, but these have not identified clearly what is causing this problem. Nor have they identified any kind of solution. There have been multiple changes of medications, stopping some, starting others, changing doses, prescription medications, over the counter medications. Luke went to the pharmacy five times in 48 hours early this week. The people there have been very nice to us.

We (particularly Ellen) remain quite isolated here because of the global pandemic. Marketa is so kind to us, and does most of our shopping.

We have another meeting tomorrow morning with Ellen’s oncologist here. And another long distance conference with her doctor at MD Anderson in Houston on Tuesday.

But to this stage, nothing is giving Ellen much relief.

She is handling all of this with grace and dignity, and compassion for others. And love.

She is not really able to do phone calls except when necessary. And is doing relatively little email.

She does very much enjoy receiving post cards or little notes. And we both continue in our hope that there are better days ahead.

13 Replies to “Sunday Afternoon”

  1. We’re sorry to hear this, Luke – but no news was beginning to feel like bad news, so thank you for being upfront about it. We join you in hoping for another of Ellen’s turnarounds – part her strong will, part your mutual love, and maybe part the hope your friends send your way.    – George

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  2. Ellen and Luke, What a discouraging situation. I’m sure it’s hard enough to feel sick,but then all the changes in meds, and the doctors not having answers,… the combination, I can not even imagine how very difficult it all is. Hopefully the doctor tomorrow will have some encouraging ideas or words, as well as the doc at MD Anderson on Tuesday. Ben and I really appreciate you keeping us informed, even when there is not a lot to say. Ellen has been sick about a year and a half now. I’m sue it wears on you both. Your spirit and determination has always been uplifting. You both inspire us to enjoy the moment, and each other. That has been a gift to us. Best wishes as you go through this coming week!
    Ben and Betty

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  3. Luke and Ellen – thank you for the gift of letting all of us join you in this difficult journey. It is not an easy journey for either of you. All of your friends and family are in admiration of the fortitude and positive attitude that you both exude. I’m not sure that I could be as strong in your circumstances. But please know that you both are in our thoughts and that we are with you always. How can we help?

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  4. …and we also continue with hope and also with awe of the love and determination you both have shown.
    Our love,
    Denise and Monty

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  5. Querida Elenita! te mando mucha fuerza desde esa Patagonia que tanto te gusta. Beso enorme y mucha fuerza

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  6. Luke and Ellen, Here are some really big hugs from afar and the words of someone far wiser than me: Mary Oliver.
    The Poem is called Wild Geese.

    You do not have to be good.

    You do not have to walk on your knees

    for a hundred miles through the desert repenting.

    You only have to let the soft animal of your body

    love what it loves.

    Tell me about despair, yours, and I will tell you mine.

    Meanwhile the world goes on.

    Meanwhile the sun and the clear pebbles of the rain

    are moving across the landscapes,

    over the prairies and the deep trees,

    the mountains and the rivers.

    Meanwhile the wild geese, high in the clean blue air,

    are heading home again.

    Whoever you are, no matter how lonely,

    the world offers itself to your imagination,

    calls to you like the wild geese, harsh and exciting —

    over and over announcing your place

    in the family of things.

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  7. Ellen and Luke,
    I finally figured out how to log in and receive your updates. My sister Alison forwarded the latest update. My heart is so full for you and so so sorry for this baffling and painful turn. I have sent prayers over the past year and will continue to “see you” fully recovered and again skiing ⛷ this winter or next.
    It’s gotten super hot here in Texas-going to be 106 today in Austin—thankfully you can connect to MD Anderson via video. Should you decide a trip to Houston is in order I would like to come down and sit with you. It’s just under 3 hours from Austin. Of Course anytime you might enjoy a trip to Austin I have a very comfortable guest room available (2 actually)….so please add Austin on your possible trips in the future—with that said Texas is NOT a desirable destination right now with COVID spiking in all the major cities.
    Interesting year we have been presented with…the social distancing really makes it harder to support y’all. Please DO let me know how I might be helpful. I have a lot of time on my hands these days….
    Sending Oceans 🌊 of 💗 Love,
    Healing energy and a hug,
    Cousin Karen

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  8. Junto con ustedes desde lejos, en espiritu. Dedos cruzados que aprendan algo bueno y util en la charla con los medicos. Abrazos fuertes a los dos!! ~Holly

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  9. Dear Luke & Ellen—we are terribly sorry to hear of this recent difficult period for Ellen. We deeply wish for good news & effective help soon from the doctors, and renewed health & vigor for Ellen.
    Ellen has shown such great character, courage, grace & humanity throughout this challenge—it has been an inspiring & uplifting thing to see—and you Luke have shown such love, loyalty & fidelity—that too has held powerful teachings for we who know you.
    I feel only awe, admiration & gratitude for you both.
    After the wonderful email & pictures from the Midsummer Eve’s picnic—and especially the final loving picture of you both—I had hopes that things were on a positive upward path—hopefully that will soon be true.
    Much love & good energy to you both.
    Paul & Susan

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  10. Thank you Luke for having the strength to share how things are going. Hopefully your doctor visits today & Tuesday may bring some answers that include lessening Ellen’s discomfort. Thank goodness for remote medical visits. Keeping you both close in my heart.

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  11. Luke y Ellen. Gracias por dejarnos compartir cada tramo de este camino. Anoche he soñado con Ellen, me desperté muy temprano……los tengo presentes en mi corazón, los abrazo desde este país con sus Apus, Lagos, misterios intensos. Le pido a todos los amigos, sacerdotes, aymaras, quechuas, con quienes he compartido que recen en sus lenguas y ritos por ustedes. Mi familia desde Bahia Blanca tambien sigue los pasos de ustedes, preocupados y atentos. Les cuento que papa y mama estan viviendo en Pehuen-co desde enero y ha sido una bendición pues estan rodeados de árboles, pájaros…..y vecinos que los cuidan…..ellos desde ese lugar tan entrañable para nosotras dos te abrazan Ellen!!!!!! te quiero amiga!!!! Y los admiro a los dos!!!!! Un abrazo María Julia

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  12. Dear Ellen and Luke,

    So so sorry to hear that the pain and discomfort has returned. I had hoped that no news was good news. I have always been in awe of your determination and athleticism and just knew/know it would carry you through this…will continue to pray that it is a bump in the road.
    I wish so badly I could do something for the two of you to make life sweeter …happier …easier. If ever that is possible I pray you allow me.
    Should you go to Houston and it is allowed for family to be with you I’d really like to see you. Austin is just under 3 hours away. Of course if a trip to Austin is ever a possibility I’d love to host you—have guest rooms.
    For now I will continue to keep you in prayers and send healing loving energy.
    Oceans of love,
    Cousin Karen

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