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. 

---

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