Home

The hospital is no place to live. Unfortunately, for many, it becomes just that. Whether management of their condition is just too complicated for home, or because there is no real home to which they can be discharged, or for a myriad of other reasons, people may remain in the hospital for long periods to receive care.

Luckily, Carol's latest stay there only seemed like forever. She's home now, and the focus shifts to keeping her as comfortable as possible. To that end, she won't receive any more of those treatments. VNA will be coming later today as part of a daily palliative process to help drain the fluid that continues to accumulate in her abdomen.

A little over five weeks ago, we ran a half-marathon together. As we ran, I looked at her up ahead of me as an embodiment of strength, and I still do. She's going to reach the finish line a little bit ahead of me.

All this goodness

Cheers!

What a wonderful weekend. We flew out to Minneapolis, got to stay in a suite (thank you, Susan!), had a great time with Eliza, and saw a fantastic concert down in Northfield. It was raining Friday morning, so Carol, swearing to me that she had read about this in Runner's World (so that must mean that other people do it, right?), ran up and down the hall of the hotel for half an hour to get a workout.  She did admit that she had to switch floors to keep people from looking at her strangely.

For those of you who know her running ways, you will have noticed that she only ran for half an hour. That wasn't just because she ran out of hallway. She was feeling pretty poorly when we were out there, and also upon our return. A visit to the doctor on Tuesday led to a short (45 minutes) procedure on Wednesday to drain fluid that had built up in her abdomen. That gave her some relief, but she will have to go in again if fluid returns and it becomes uncomfortable.

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Always goodness. Be brave. Be happy, okay? Courage, chook, ja?" 

-- Katherine Rundell, Cartwheeling in Thunderstorms

There is an art to rising

There is an art to rising. For most, it is lost to us, as birth. There are so many other moments in our day/life; why should this one be memorable? And yet every day, we are born anew, to look at our rooms, our selves, our loves, our lives through a new glass, each day with one more chance to know fully and to be fully known.

I have seen Carol rise from places where it seems there is no sun, where darkness threatens to overwhelm. And still, she rises.

This round of treatment has not been the easiest physically for her, but we're headed out to Minnesota tomorrow. There we will find sunshine, and warmth. She won't like getting up early for the flight, but she will rise to the occasion.

Questions...

I'm never going to make it up those steps

How is she still running after thirteen miles, and why can't I seem to keep up with her?
If the second half really is all downhill, why do I feel like I'm slogging up Camel's Hump?
Why isn't everyone at the finish just taking a nap?
Can't the mac and cheese come in a bigger bowl?
Who does this stuff?

In this third week, we ventured down to Bellows Falls for the Front Porches half marathon. No expectations. If we ran two miles, we'd run two miles. If we were dead last, that would be okay. If I needed to go back and get the car, that would be fine. But none of that happened. As usual, Scout set the pace and pulled me along. Volunteers and other runners were great. By mile ten, the only thing leading me along was the sight of Carol in front of me. If she was going to finish, I could go with her, pretend that I was supporting her when all the while I knew that it was really the other way around. Or that at that moment, I was the one who needed the support that her presence gave. At another moment, in another run, I might be able to be that presence up ahead, with an encouraging word, letting her know that she's come so far, and that I am so very honored to be there with her.

When she resumes treatment on Tuesday, I hope the memory of this run will remain, to help, in some small way, to get through to the next third week.

They Came, They Hopped, We Closed the Doors

Art Hop was a great weekend of activity. The studio was bustling both Friday night and all day Saturday, and it was great to see people coming through. Paintings flew off the walls! Well, not literally, but there was a lot of movement.

On Friday, we also met with a urologist, who advised Carol that her kidney issue was no cause for surgery. Even though the surgery would have been outpatient and quite minimal, there was much rejoicing. Now she gets ready for her next cycle of treatment, which starts tomorrow. I can hear her in the kitchen, trying to get in some extra calories before she doesn't feel like eating for a few days.

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"Try as much as possible to be wholly alive with all your might, and when you laugh, laugh like hell."

-- Ernest Hemingway

Every Hour of Light and Dark is a Miracle

If you think you've seen the title words to this post somewhere before, pat yourself on the back. You either have a great visual memory, or you're marvelously well read!

Carol has the quote sitting in her studio, inside Bren's "mailbox", from a show at the Flynndog a few years back. The quote is from Leaves of Grass, a copy of which now sits in our house, having made its way from Pop's house (remember, Rob?) almost thirty years ago, with a brief stop at the Weybridge church where we were married.

This past week, a CT scan revealed that Carol's condition hasn't changed very much. Through the light and dark of the scan, doctors discerned that there is a partial blockage in one of her kidneys, but this can be dealt with through outpatient surgery -- in in the morning, out in the afternoon. The timeline for that isn't set yet; she'll meet with a urologist later this week. Other than that, the CT showed that there has not been any spread from what the doctors already knew was there. Best news would be if things were shrinking, but stability isn't bad. And she feels good, which says a lot. I certainly couldn't have gone out and ran eleven miles yesterday.

The South End Art Hop is this coming weekend. Hope to see many of you coming through the rabbit warren of studios in our beloved South End Arts District.

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(click on the pages to make them more readable)

Healing Winds Vermont

Thanks to a great vision and the efforts of many hardworking volunteers, Healing Winds Vermont offers sailboat tours on Lake Champlain for individuals, as well as their families and friends, who are dealing with cancer. We were able to take advantage of this great resource a couple weeks ago, and it was a blast. Captain Sandy and mate Kathy (both volunteers) led four of us out on the open waters, through a quickening rain spell, past and around Juniper Island, to a swim just off Redrocks, and finally back to the dock at Perkins Pier. It was a wonderful afternoon. 

This cycle, Carol has felt better than she has in a long time. The usual two-week period of pretty intense nausea and pain has been noticeably calmer this time around, which has been such a relief. Knowing that she also has an extra week off makes it even better.

Jumping in the Water

same lake, different season

You can tell they're siblings just by looking at them. They may seem different as all get out, but don't let that fool you. Each has a left leg that kind of wings out when s/he runs, long legs, and a lean figure (not just from enduring over a year of treatments). And when Wayne says, "I just love jumping into the water from a boat," I know it runs deeper than whatever physical characteristics they may share. So, while they may be different in so many ways, there is a common pulse there.

Last week was a full week. Horseback riding, biking, sailing, traveling, eating out. It was great to share these with Wayne and Debi, and even better that Carol was in her third week. This week is the beginning of the next cycle. There's a little comfort that she will have an extra week of rest this time, to allow her to experience the Art Hop when she's feeling relatively well this year.

A special thanks to everyone from the 100 on 100 team -- we were with you in spirit last weekend!

The Dash Between

Yesterday, on her first Saturday after treatment, Carol said one of her two goals for the day was to go out on a little bike ride. I asked if she thought that might be a little ambitious, if lying on a tube on the lake might be a more suitable first weekend goal, but she just responded that that sounded good, too, so could we do that as well? So we went for a bike ride and later, after a little recovery time, went to the lake.

I should know by now what a sucker I am. But who could resist her as she's biking up a hill, saying, "I am so nauseous right now, and my legs are like jelly," and just wants to keep going?

We had just a beautiful visit with Eliza last week, made even more special by cake and sailing. Thanks, Vicki and Carol L., for making these events so wonderful. Who would have thought that I, landlubber that I am, would say that something would be made more special by sailing? There is always something new in the world.

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                                          And you, who are as old as I am,

                                          I love as I loved you young,

                                          except that old, I am astonished

                                          at such possibility, and am duly grateful.

                                                       -- Wendell Berry

Third Weeks are Better

Why are third weeks better? Oh, for so many reasons. For starters, Carol begins the week feeling like she has something to prove and goes out and runs over 7 miles on Sunday. This morning, I come home as she has her shoes laced up and is heading out to do a brick session. This afternoon, we pick up Eliza at the airport. Later in the week, Carol and Eliza will ride Icelandic horses (I'm bringing the bike this time).  Third weeks are better because she has a semblance of her life back. Of course, towards the end of the third weeks, the first weeks loom. But knowing that the treatment has been bringing down her tumor markers helps make those first weeks a little easier to endure. And the knowledge that these third weeks do come -- that doesn't hurt, either.

Wishing you all awesome third weeks.

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"Beautiful people do not just happen." -- Elisabeth Kubler-Ross

Along the camino, there sits a little rock doing a big job

One little stone...

Whether it's been Susan running in Grandma's Marathon (btw, great job, Susan!), Sylvie sending photos from the Camino de Santiago showing her decked out in the shirt made by the 100 on 100 team to support Carol, family shifting to accommodate us when our plans change at a moment's notice, the open offer for Callie to have doggie sleepovers, Kathryn and Doug showing up with good cheer and better soup, Harper wanting to go all over the park with Aunt Carol, and so much more, Carol and I are every moment touched by the kindnesses of those we love. As she prepares for her tenth treatment of this cycle, her neuropathy is a little worse, but she takes comfort that she'll be receiving one fewer drug tomorrow, which means that she'll be in the chair for less than five hours. She will still go home with the pump, but sooner.

Along the Camino de Santiago, there is a large iron cross ("Cruz de Ferro") surrounded by a rockpile some 20-30 feet high. It's customary for pilgrims on the walk to leave a rock or other token there, signifying an unburdening of one's soul. Before she left, Sylvie asked Carol to give her a rock, not too heavy, which she would place on the rockpile. That little rock now sits among its fellows at Cruz de Ferro.

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"Your present circumstances don't determine where you can go;

they merely determine where you start."

          -- Nido Qubein

Changing the mixology

Since January, Carol has been on a cocktail of (minimally) four different drugs for her treatment. This week, that main number went down to three. One of the nasty four is a platinum-based drug that has a tendency to cause neuropathy in the hands and feet. Rather than being flushed out during the interval between treatments, though, this drug's effects are cumulative, meaning that the neuropathy becomes worse over time. This is what was starting to happen for Carol. While she had noticed some tingling early in her treatments, by this time, scheduled to be her ninth cycle of this concoction, it had become more insistent. Rather than risk a worsening of that condition, she decided to forge ahead with the other three drugs, but to leave out that fourth.

What does this mean? Well, for starters, it would be nice to think that the neuropathy would just go away, but that will take time. Without more of that drug entering her system, she should feel the effects of the neuropathy lessen over the next couple months. As for the overall effectiveness of the treatment, the hope is that the other drugs kick in their share, keep Scout's condition good, and let her get on with the business of living.

Thanks, as always, to everyone for your support.

On the Eve

With the luck of good weather, we will be celebrating our 25th anniversary Tuesday afternoon by riding Icelandic horses in Waitsfield. I never actually thought I'd be writing those words. Oh, the "celebrating our 25th anniversary" bit I fervently hoped wasn't too much of a stretch; it's the "luck" of being able to ride Icelandic horses in Waitsfield that comes as the surprise. But then, I wouldn't have expected to spend our 24th anniversary meeting with an oncologist, either. The good fortune I have had to spend the last 25+ years with Scout is matched only by the good fortune I have to continue to be with her. Riding Icelandic horses? Icing on the cake.

While we know that the time before any of us was here stretched so far into the past, and the time after we're gone will span so deep into the future, it is, over the past year, this time right now that has come to mean everything. 

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Sometimes people are beautiful. Just in what they are.

-- Markus Zusak

There Will Be Rest

There will be rest, and sure stars shining 

Over the roof-tops crowned with snow,

A reign of rest, serene forgetting,
The music of stillness holy and low.

I will make this world of my devising
Out of a dream in my lonely mind.
I shall find the crystal of peace, – above me
Stars I shall find.

                 -- Sara Teasdale

With Carol in mind...

As I mentioned in the last post, Susan and Carol have run together since they lived in Ames. Below, Susan writes about her next run. 

With Carol in mind... If you're reading this, it's because we have something in common. We both love Carol and are heartbroken by the burden that is hers now.  That Steven (the love of her life) and Eliza (the love and joy of both of their lives), are also carrying the burden... that just adds to the sadness, sorrow, worry, sense of maddening powerlessness when we think of how life changed in an instant just about one year ago. Carol had just run the Burlington Marathon -- and run it with an S-shaped spine, a bum hip, and (come to find a later), a sinister tumor the size of a melon. Or maybe it was a lemon?  All I know is that it was a fruit that I used to consider very differently than I do today. Still, she ran her hometown marathon in a way that is characteristic: small, steady steps; laughing through the pain; paying attention to the small details along the way -- signs of spring after a crazy-long Vermont winter; friends along the way, calling out her name.  Step-by-step she kept running for 26.2 miles -- her steps were intentional, mindful, joyful. But of course, that's Carol in a nutshell: intentional, mindful, joyful. No surprise that she moved from Animal Husbandry to Art (beautiful, nature-infused Art) all those years ago. And here we are today, just one year later, and Carol continues to teach us much-needed lessons: love fearlessly, dream big, keep moving forward -- small steps forward -- living life like there's no tomorrow. When I run Grandma's Marathon on, I'm going to run it with small, steady steps. I'm going to drink in the beauty of Lake Superior, and I'm going to run the damn thing with Carol in my heart -- each and every tiny step. I'm going to believe that a cure is possible, and I'm going to demand that we fight back against something so mean-spirited, (cells gone mad?! What the hell is it?!) that, for a time, tried to stall this most amazing human.  Please contribute to Pancreatic Cancer Action Network if you are able, to raise money for the cause in Carol's name. I know from Steven's blog and from Carol's stories, that you are already doing what is needed: you are loving her like warriors, and that you are surrounding her with care and comfort and hope, each and every precious day.  If you have a few extra bucks for this hope-filled cause, I am honored to take it and run with it. Know that the run will surely be slow, steady, imperfect and full of laughter... that's Carol's way -- laughter and love in the face of it all. Sincerely, Susan Burns  susaburns@hotmail.com Follow This Link to visit my personal web page and help me in my efforts to support Pancreatic Cancer Action Network

We are not powerless

"Building loving communities of care is a sign that we are not powerless in the face of suffering." 

-- Herbert Anderson

Every time I think about it, I am overwhelmed by people's generosity. Whenever someone stops for long enough in the rapids that we call everyday life to notice another's suffering, there is compassion. I witness this generosity of spirit every day at work, with friends, and most certainly in just about every aspect of our lives this past year. It will be a year ago next Sunday since Carol crossed the finish line at the Vermont City Marathon, and a year ago since she began a different kind of marathon. Twice, as a part of Team in Training, she has raised funds for the Leukemia and Lymphoma Society and run in events in memory of her big sister Shirley. And now Susan, who swore her marathon days were over, has laced up her running shoes to get ready for Grandma's Marathon up in Duluth. Cue the Rocky theme song. Susan, you give me goosebumps. Just like Chris the curator had in that little gallery in Jerome, Arizona, when he couldn't believe that Carol was the sister of the Wayne Norton. Really. You are that cool. Thank you.  We are not powerless. 

Only in this actual moment is life

A few scenes from our wonderful trip to the Southwest.

"going to the mountains is going home." 

-- John Muir

Thanks so much to Wayne and Debbie, the Gardening SWAT Team, Doug and Rebecca, and the rest of you. You all help put the smile there on Carol's face in these photos.

Missing the Mark

It's the hope that gets me every time. It really is. I set myself up, and I know it. I have a picture in my mind of how this time will be different, how Scout will weather this treatment in a way that leaves her standing, smiling, and saying, "There. That wasn't so bad." But this condition doesn't care about my hopes, or her hopes. It is just doing what it does, and the treatments are trying to do what they're designed to do. The collateral damage, though, is real.

So, while these past 10 days have been fractionally better, it's a pretty small fraction.

Luckily, we've had family visit, which was wonderful, and we're about to visit some more family out in Arizona, far away from the last grip that winter has on us here.  That will help put Carol in a better place, both physically and psychologically, to come back to treatment the first week of May.

To think in terms of either pessimism or optimism 

oversimplifies the truth. The problem is to see reality as it is.

-- Thich Nhat Hanh

Finding the Sweet Spot

I came home yesterday from work, and what did I see? (No, not that the garage needs painting. That's nothing new!) Scout was sitting out in the back yard, bundled up, with her pump, Callie by her side, the two of them soaking in the sun. And on a Wednesday! That was when I was pretty sure that her doctor had found the sweet spot of this treatment for her. Every cycle before this, Tuesday through Thursday would keep Carol in bed, without either the energy or health to do much besides sleep. Although he had modified the dosages of the various drugs before, this time seems to have really helped in terms of her side effects. Coupled with the new once-every-three-weeks schedule, this might make the whole ordeal more tolerable for Carol.

From "What if?" to "What Is"

sculpture by Marie Davis

We are so lucky to have so many people who so obviously care about us. That's the honest truth. And yet, it is still easy to find ourselves waylaid by thoughts that don't seem to want to go away. These thoughts about what might happen can bring us to places that are hard to extract ourselves from, despite our best intentions. Over the past several months, Carol and I have spent a lot of time trying to spend less time worrying about these "What ifs". With the help of the mindfulness workshop we just finished this week, I think we may have come up with a phrase to help as a guide. Instead of focusing our energies on the unanswerable questions that start, "What if...?", we'll look at "What is", examining what is happening at this moment, bringing ourselves back from those difficult places. I know, I know -- it sounds easy on virtual paper, but any port in a storm.

And when we look at what is, the first thing either of us sees is this incredible network of caring people. We feel a bit like the wonderful carrot from Marie's sculpture (thank you so much, Marie, Aaron, Elizabeth, and Ivan!), watched over by the moon and tended by such lovely, soft-eared bunnies.

In order to give her more time to recover from side effects, Carol's treatment schedule will now be once every three weeks. This is her third week, so she's feeling relatively good. She then goes on Tuesday for her next session, which will be modified a bit to give her a little more relief from side effects.