David’s recent posts on Susan’s page on CaringBridge:
Another precious week has passed, seven more days of still being able to establish mutual connection with our eyes. It is difficult to notice all the specific changes in her when always here as I have been. However, thinking back one week gives evidence to much that has indeed progressed.
She is now on regular scheduled medication every three hours (24 hours). Her energy is quite low, and things are shaky. Comprehension comes very difficult, as do any responses which are usually one or two words, and very labored. She’s still there though, once in a while nuggets come out. Last night after being up for a bit, followed by a very labored getting back into bed, she said “Now we just need to wait for the hand of God.” and smiled, looking very worn out. She is eating, although very little. Mostly she sleeps. As I’ve said, there are many worse things – it’s actually very peaceful. The hospital bed is gone, and she is again in a bed she knows. Once again, we don’t know how long this last stretch will be. Christmas? That’s certainly a hope, but I know that God gives us the strength we will need for what comes, when it needs to come. When is not our call.
Very important for us recently, however, is the chance to have time with people. Susan’s sister Nancy (of Sacramento) was able to be with us for several days, our close friend Peg has been with us on more than one occasion, and yesterday, Susan’s brother John, sister-in-law Freddie and niece Stephanie from Kansas City drove up and spent several hours with us in the afternoon. My brother Steve from Columbus was also here this weekend. What catches us all by surprise each time is the farewell – an unexpected realization of the significance of that farewell. It begins with them thinking they are the ones leaving saying good-by and we quickly realize it is Susan who is leaving for good (this body and our realm, anyway). While intensely sad each time, it is a tremendous gift to have that opportunity at all, to get to have a mutual exchange of love in leave-taking. (Makes me think of the French: “Au revoir” which means “to seeing you again”…)
Son Jeremiah has returned and will be doing his job from here, allowing him to spend time here with her, and help me with the increasing level of caregiving. Benjamin also comes by almost daily, with his new restaurant very close to our house. And of course, my siblings and in-laws – all extremely helpful when I need to skip out of the house to get something. And the food – oh, my – the food! We are grateful for that, but can’t take too much which then needs to get eaten! Susan eats very little, with a “simpler” palate. We are pretty-well set, and yet very grateful for those gifts.
Last Sunday afternoon (as I had reported on Facebook) we had a large group of people from National Lutheran Choir and Mount Olive (plus more!) assemble outside our house to sing for Susan and I. She came downstairs (with our help) and we sat and wept as we listened. Afterwards, people came and waved to us through the front window. I said to Susan I felt like we were in the window at Macy’s, but what a gift that was to us. She smiled one of the largest smiles I’ve seen in a while under that beautifully shaped hair-less head.
With Jeremiah’s presence at home, I was also able to attend liturgy at Mount Olive today. What a blessing that was as well – and got to sit with my mother, father, and brother. So very grateful for the liturgy and that community.
So we wait. Today’s lesson for the Fourth Sunday of Advent is about Mary – being pregnant with Jesus, and she sings that great canticle: the Magnificat. (“My soul proclaims the greatness of the Lord”). I’ve often thought, those who have gone through pregnancy have a special connection to the season of Advent, Mary’s story, and the concept of waiting. Our situation, however, I’ve realized is not that different. We too, are waiting for a new birth. In fact, all of us can be: Christ gets born in us and we get to give birth to God in the world. A great release! A great release of life-changing, life-giving, all-healing energy. All of us in hospice situations, await the new birth of energy freed from the vulnerability of this human body — this beautiful, pleasureful and painful mass of matter in, of, and on the earth, – this unencumbered energy which we call the soul. Then we get to sing with the angels (maybe even AS an angel!) “Glory to God!”
Dear family, friends
David here again. (which, again, you’d probably guess pretty quickly!). Here’s a link to some music: go to it, then come back to this page to read while the music plays.
This has been a fairly difficult week for Susan. I mentioned clear evidence of the cancer’s advancement. This week she has experienced pain in her head, abdomen, her left ankle and foot greatly swollen, and there is also cognitive impairment. She is still there, still Susan, still the brilliant, eloquent Susan, but harder to get at. Pain meds have reduced the pain, another medication has reduced the swelling in the ankle/foot, but it’s clear the disease is still progressing, and the treatments taking a toll as well. Now she mostly sleeps.
Meeting with the Oncologist December 2nd, combined with our conversations as we approached this appointment, the decision was made to cease further treatment and enter hospice care for as long as possible, at home. We do not feel we are days or even a week from her crossing over. However, doing this will allow us to diminish the harshness of the chemo and radiation, help her feel more comfortable and as whole as possible for the rest of her days. All of us share in the reality of our life-journey coming to an end – this we know. But it’s harder to find that to be much shorter than we thought. It is an adjustment, but we both feel at peace with this path, and trust it to be the best way to proceed, knowing that God gives us to tools and community to go through it, spiritually, emotionally, and physically.
How long? We do not really know, although it seems very unlikely a long-term situation. Our task now is comfort, lack of pain, and basking in the now. We can define abundance as simply being able to exchange connection at least through our eyes one more day – every day that we can. We can get through it knowing that we are carried by the Grace and love of God, largely through you all, and for that we are grateful. And we are grateful for the ways you’ve let it be known to us that you are on this path with us, praying for us.
Sometime in October, I believe, the Universe (aka God), whispered in my ear: “Take your sabbatical from Mount Olive December through February. You’ll be needed.” While we do not plan to stay away from our faith community at Mount Olive which we love and need, I will not have responsibilities and can spend these days here at home where I will be needed. At this point I’m looking forward to conducting NLC’s Christmas Festival next week, and regard that as a tremendous gift of beauty and light for this, the darkest time of the year. (The program will be live-streamed Friday, by the way – go to www.nlca.com)
This drives me to share the powerful healing music which the National Lutheran Choir sang in our All Saints Program last month. It is Robert Hobby’s absolutely lovely setting of “God Be In My Head,” a text which really says it all:
God be in my head, and in my understanding.
God be in my eyes, and in my looking.
God be in my mouth and in my speaking.
God be in my heart and in my thinking.
God be in mine end, and in my departing.
This says-it-all-text will be my mantra in these next weeks. It doesn’t say “God fix my head” – just BE, and be in everything, including the departing. The twist to this text, however, we’re not really asking God to make the move, so to speak, as God is already in all those things – it is we who need to be still and allow awareness of that peaceful, painless, comforting presence to grow deeply and intrinsically in us. It doesn’t get more Advent than that.
David here, as I’m sure you will know pretty quickly evidenced by a different eloquence (ha!)…
There has not been a post since October first, although there has certainly been activity. Probably the most significant thing was having been able to spend Thanksgiving with both our sons and their families (Jeremiah, Karen, Hannah and James from Arkansas, and Ben, Angel and Ella from Blaine). That activity was a huge gift – even if we needed to sit back and accept their generous offers to do all the preparation/cooking/clean-up. Grandkids: bravo on those pies!!!
Susan’s cancer: The first round of chemotherapy and whole-head radiation did not do as we had hoped. Scans in October showed that while some lung tumors and brain tumors were reduced or gone, some tumors in the lungs and uterus had either grown, or in the brain, new ones appeared. There were seven lesions found in the brain, four of which were known from the previous scan, but had grown despite the radiation. Not the news we had hoped for, to be sure.
So a new round of stronger chemo, and targeted brain radiation was begun, and we are now in the second month of this new treatment. In mid to late December, new scans will be taken, and the effectiveness of the new treatments will be known.
In the meantime, while we still hope for news of slowing or diminishing growth, it seems evident that this is a very aggressive attack on the cells of Susan’s body, and most certainly on such a precious and astounding gift – her brain. These past weeks have given clear evidence that this aggression does not seem to be letting up. While scans are a couple of weeks from now, the assumption is that we’re in for a very bumpy ride.
This brings to my mind a couple of things.
One: One never knows the longevity of our time on earth, in this body (also made of matter-similar to the earth). None of us knows the day and hour – brought to our attention in the lessons for this First Sunday of Advent. We should live life abundantly – with awe, savor, and comfort in knowing we are in God’s company. Robert Shaw said to his choir: “We sing to two people. The one who is hearing this for the first time, and the other one who is hearing it for their last.” We should all listen and experience life as if both of those is true simultaneously.
Two: Neither Susan nor I believe in some sort of plan of God’s that brought this on. For us, we understand one of the important things Jesus teaches us: To be human means many things, but it does mean that the body in which our souls live here on this earth has its limitations. It’s a vulnerable yet ingenious vessel allowing us to taste, smell, touch, feel, experience pain and pleasure, and in which we experience love in profound ways both spiritually and physically. But the human body (like the earth) is frail and susceptible to injury, disease, and is destined to death. The Jesus story says “Yeah, that – here’s the thing – you don’t need to worry about it, because this body thing is not the end. The soul – that’s what matters. Let me demonstrate.” When we can trust that it frees us to get past of our fear of harm to the body or death, and here’s an important part: we can live abundantly. (of course we’re tasked to define what “abundantly” means…..)
That’s what Susan and I want to do for now, with all of you: live abundantly– cherishing our relationship with you, your prayers, love, thoughts, and she (and. I) love, love, love those cards.For now, we wait for the next scientific data revealed through the scans, but our job first and foremost is to live abundantly. Savor. Not fear. Indeed that is easier stated than done, but it’s what we will lean on. We strive to bask in the presence of God. As one of Susan’s Hymn Festival reflections put it, “There is no place that God is not”. This we believe to be so true.
That’s the abundance.
We’ll try to keep you up….