Training

Friends. Today is the second anniversary--two years since the discovery of the tumor that served as a railroad switch and changed the trajectory of our lives. Just typing those words, I still feel the drop and the wind-rush of the roller coaster that ensued.

Next I unconsciously reach and rub my leg, half-expecting to feel the lump that propelled me through scans, flights, and medical offices as if I were on an express train: appointments and procedures flashing by like stations. And on those express trains, there is no getting on or getting off in the regular places. You stay on, skipping past stations and the people waiting on those platforms, everything a blur.

Even so, in the midst of our isolation we were not alone. I still remember and am grateful for the many acts of kindness and generosity that came our way. I remember that scarf you knitted or sand dollar you mailed or salmon you brought for dinner; the card you sent, the internet you got hooked up, the shirt you had made. The check you sent. The car you lent and the children of mine you took into your home when it was inconvenient for you. Later, the rehab walks you took with me that were so slow you must have wanted to scream (but didn’t). I remember how you walked in and joined us in our story--no small thing when it’s a story that constantly reminds of us of something that most folks in our culture would prefer not to ponder.

We have been pondering it anew the past few weeks, life and death and cancer and stories. Viva La Vida fell on Mother’s Day weekend this year. Jesse returned home late last Tuesday from his annual conference in Princeton. The story of my cancer will always be very much caught up in that place and period of our lives. It was such a sweet time, and the sudden loss of it brought a grief of its own.

There is grief, but there is also a great deal of gratitude. I am grateful for gifts I mentioned above. Many of the tangible gifts made it into my #liturgicalradiation series (I Instagrammed my way through radiation, taking some tangible item into my sessions and praying for the person associated with it).

One gift that could not be carried in was a video compilation of some of my nearest and dearest lip-syncing Katy Perry’s “Roar” for me. It was amazing. I have gone back to it again and again. The kids have picked it up as “Mom’s song.” Along with Rachel Platten’s “Fight Song,” it became the theme song of the time (see playlist below). And so when Jesse came back from Princeton this week, he brought us all back presents with an Eye of the Tiger theme. We are all kitted out with tiger stripes and I’m feeling a bit bold and steely and joyful to wear them. Jesse brought me a new hat for hiking in. It’s perfect.

It’s perfect because I now regularly hike. This in itself is no small thing, for me an act of growing courage and hope and strength (we also found out in February that it is probably helping to heal things that one surgeon thought would never improve). I am able to hike because of God’s gracious care of me, and helped along my way by the generous gifts of friends who are still walking with me, both metaphorically and physically. I walk with strong legs and working lungs, fancy boots and steadying poles, all of which have been gifts freely given.

Putting on a tiger hat and walking out of the door brings all of these things to the front of my mind. And now, instead of praying for people during radiation sessions I am praying as I climb the trails. What a tremendous gift it is to walk out of my front door and keep going up the mountain. One step at a time: the opposite of a speeding train.
#caminotraining #dontwaittocelebrate #twoyearslater

Nasturtiums on my last hike

My New Favorite Season

Fall is my favorite season. This is a new development—summer has always been my número uno, with Fall a (very) distant fourth. I despised the shortening of days and the flagrant display of death and loss. As far as I was concerned, the brief and blazing gold of the ginkgo was the only redeeming moment of the season.

Three years ago that started to change. I was on a train on another continent, and after so many years in the land of perennial summer (and youth) I think I was more ready to appreciate the golds and browns. It was then that I began to connect the dots between the glory of a season that had always looked like death to me: and was perhaps more primed to look past the death of winter to the raucous life of spring.

I find myself in the week between all of the scans and the meetings with doctors. I do not expect any big drama, but only the walking forward on this road where we can choose whether to mark time by scans, or by the colors of the leaves, or by the liturgical calendar of the church.

The scans are scheduled and regular. They are very familiar, but there is always some moment in the process where I turn the corner from equanimity to trauma. Sometimes it sneaks up on me, but I am noticing that the waves often start crashing with the injection of one or the other contrast solutions. I reach out my arm, an I.V. port is started, and All The Things are pushed in. Often in these times I have heard an echo of John 21:5 in my head: here I was stretching out my arms, and going where I did not want to go. Tuesday I pulled the full text out in one of the waiting rooms and found:

Truly, truly, I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go.” 19 (This he said to show by what kind of death he was to glorify God.) And after saying this he said to him, “Follow me.”

What a beautiful and terrible thing to sit with on Tuesday. By what kind of death he was to glorify God. And after this, “Follow me.”

The stretching out of my arms for an I.V. is not death, of course. But it is part of a road marked by death. There is some trauma there, and some being led where I do not want to go. And so I am challenged to consider how, by weak parallel, I might glorify God in the experience. I hope to increasingly turn my eyes to the other sorts of death that might bring Him glory. Like maybe from Colossians 3:5:

“Put to death therefore what is earthly in you: sexual immorality, impurity, passion, evil desire, and covetousness, which is idolatry.”

There is so much that is earthly in me, more insidious and more painfully rooted out than cancer. Reflecting on how death might bring glory to God is helpful, as is the promise that immediately precedes the call to put to death what is earthly, indeed what the “therefore” is referencing: “When Christ who is your life appears, then you also will appear with him in glory.” These are the sorts of reflections that now come to mind when I see a ginkgo. Death and life and kinds of death and glory and time passing and future hope. On the way home from church today, I drove past the only one I know of in Santa Barbara to see how it was coming along. It has started to turn but isn’t quite there yet…so I will return and hope to catch it in its glory.

These are some of the reasons why Fall is my new favorite season. I no longer think of the gold and crimson of autumn as all death and loss. Instead I see them as a bonus gift that shouts, “Hey look! There is a death that means glory, and we are not going to let it go unnoticed!” Here is a celebration that points to and promises the beauty that is spring. One season is a death and the other is a resurrection, but they are both glorious. And both say, “Follow me.”

The Glorious First of June

Whenever June comes around, I have been put in mind of two things. My younger brother's birthday is the first--he was born 34 years ago this day (Hooray!). The second is a sea battle that took place between the British and French navies on June 1st--222 years ago. The battle is referred to (in English, anyway) as "The Glorious First of June."

With this year's June, however, I have been playing the "one year ago" game. The first half of June 2015 packed in a lot of action--so there is always something to process. June first -- the anniversary of the MRI and the phone calls with my doctor and the buying of a one-way place ticket to Los Angeles.

Late at night on June 2nd of this year, J and I stood in the kitchen replaying the events from exactly one year earlier--I will not give you the full blow-by-blow of my travel day, but even we had forgotten some of the drama. The switching of airports. The kid throwing up in the car. The switching of flights, again-- me on the phone with my sister while she looked up online to see if there was any option left to us that would get me into a doctor's office at Cedars-Sinai by 8am the next morning. She found it. I booked it. I made it. My luggage didn't. I crawled into bed at Jesse's grandmother's in LA at what was 5:30am on the East Coast. In the midst, so much drama and adrenaline. Looking back, so much to be grateful for. So many offers of help and so much generosity from others.  Mentally we bounce back and forth between the past and the present.

Yesterday, on a glorious first weekend in June, the local cancer center hosted a celebration of life called Viva la Vida (in conjunction with National Cancer Survivors Day). I got an invitation in the mail a few weeks ago, because although most of my care is with the team down at Cedars I did do my radiation treatment locally. At first I thought that it wasn't really for me. Not just that it wasn't the sort of thing that I would want to do; but that it actually wasn't really for someone like me. What does being a cancer survivor really mean, anyway? Who counts? And now that I am doing quite well it is all too easy to remember the dramatic plane rides and forget about the doors that opened with words like "multiple metastases" and "lobectomy" (lung, not brain). Doors that have swung shut again for the present. Who wants to dwell on mortality, anyway? But with now-closed doors there is also at the back of things the concern that I made a great big deal out of nothing. That perhaps this article was written for me: Report: Today the Day They Find Out You're a Fraud. And so accepting an invitation to a celebration for cancer survivors seemed like an assertion of status I don't really have.

Wait a minute? In spite of my fear of claiming something that isn't mine--or that I don't feel that I deserve--as I considered, I took a few steps back. I left the invitation on the refrigerator for a few days (ok, weeks?) and thought about it. I have had cancer. I have. It really happened. I was there. And then less of me was there. It so happens that my cancer doesn't match up with my idea of what qualifies as having had cancer (see Onion article, above, reflecting on a universal condition of man run amok). On reflection, though, I think that outside sources would corroborate that I have had cancer. And survived. So maybe this invitation was for me, after all?

Viva la Vida was also for friends and family of survivors. We haven't talked a ton about cancer with the kids, but they have borne this along with us. And so when I get an invitation that means free sports and lunch and face painting and ice cream and carnival games and crafts and magicians and hair painting nd live music, I decide that I am not going to take that away from them. That maybe it will be good for all of us to name what has gone down this year. And to say it has been hard. And to be grateful to God for getting us through from there to here.

Going to Viva la Vida together was one way to acknowledge that maybe I am doing so well because He has been good and has heard these prayers of ours, and of so many others--not because there was never anything really wrong to begin with. There was something very, very wrong. And for the past year (and who knows how many more?) that part has come untrue. Going into this weekend I realized that not acknowledging the depth of need meant not giving glory to God; meant taking for granted the place in which I now find myself. Which is a good place.


So we went. And we played. And I waited in the (seemingly) interminable line for face painting--twice. It is no small thing that I was able to stand on my own two feet for that long, friends. There were carnival games and an ice cream booth and a cookie booth and a popcorn booth.  Just walk right up, there for the taking--no questions asked. Everything a gift. Painting crafts and lunch and pink streaks in Pixie's hair and jewels on Nutmeg's forehead. Sunshine and sea breezes.

That sea battle I mentioned earlier? War ships have most of their guns along the sides. Instead of lining up his ships with their sides facing a line of the sides of French ships, the commander broke with contemporary conventions and instead ordered each ship to head straight into the line of enemy ships--and through. This meant taking heavy fire on the approach, followed by the ability to blast both sides at once. Into the fire and through. Fully engaged. The Glorious First of June.

Bud "won" the kite because he kept in the air for more than 10 minutes. He ended up letting out ALL of the string.

The Liturgical Calendar on Memorial Day

Here we are again at the end of May.

A year ago this weekend is when everything started to get crazy. When the control I thought I had over my life and activities imploded, and I started waiting for the phone calls that would tell me what I needed to do, or would be permitted to do, and when and where.

As I write, this year, today, the kids are all home from school. It's Memorial Day. They are cooking up some joint activity that involves costumes and bonnets and textiles pulled from neatly folded stacks. They are getting along and working together to realize some vision that I can't quite make out from back here in my bedroom. I don't dare step outside and upset the delicate balance of the magic that is happening.

When I look back on last spring, it seems magical to me, too: a time poised before the precipice. For the past couple of weeks I have been dusting off memories of last year in Princeton: "A year ago today we played football on Princeton's practice fields." "A year ago today we drove up to New York and retrieved Pixie from the cousins." "A year ago today it was so hot we drove down Quaker Bridge Road and bought a Slip n Slide and inflatable pool." (Quaker Bridge: because a Bridge. And Quakers.) That last is bittersweet: how I spent time running between stores, looking for the best deal on a sturdy pool that would last. When the next week I was out of there.

This summer will be a series of anniversaries. I am hoping that there will be time and space to process each in such a way that I can put things to rest and move ahead. 

I have often wondered about my propensity to mark time by specific fixed points. Does everyone keep in the back of their mind what they may have been doing on a particular day the year before? In some ways this makes the regular rhythm of day-to-day more terribly beautiful: an overlay of the past on the pattern of today. There may also have been a time when I would do the same with the future ("This time next month I will be_________"), although I have not been doing it much this year. Since last June the view ahead has been more opaque. For example,  J and I plan to take a lovely trip together soon. We have been planning it and mentally marking it with the hashtag #dontwaittocelebrate. And yet, it keeps sneaking up on me.  There has been little counting down of "this time next month" and last weekend I realized that I am afraid to look forward to it. If I get to enjoy it, great. If not, there will be no smashing to smithereens of expectations.

This feels safe, and yet doesn't quite seem to be the way I want to live in the world: waiting without looking forward. And so I want to pick up the church's liturgical calendar like a piggy bank of stored goodness, and shake it, and see what else it might have for me inside.

I can hear the drumming of Deuteronomy, the Gospels, Paul: "Remember!"

"...you shall not be afraid of them but you shall remember what the Lord your God did to Pharaoh and to all Egypt, the great trials that your eyes saw, the signs, the wonders, the mighty hand, and the outstretched arm, by which the Lord your God brought you out."

"You shall remember that you were a slave in the land of Egypt, and the Lord your God redeemed you; therefore I command you this today."

"He is not here, but has risen. Remember how he told you, while he was still in Galilee, that the Son of Man must be delivered into the hands of sinful men and be crucified and on the third day rise.”

"Remember Jesus Christ, risen from the dead, the offspring of David, as preached in my gospel, for which I am suffering, bound with chains as a criminal. But the word of God is not bound!"

And so of course I think that the church's calendar invites us to remember. To revisit again and again the things that we need keep before us but are liable to forget. Perhaps not all of those are things in the past. I am coming to think that the calendar is a pointing forward, as well. Around and around the years, seemingly marking time and yet (like a corkscrew) moving forward. Reaching out and pulling the future in.

And so as I revisit and remember this summer, I hope to see clearly God's goodness to me in the past: the ancient past, the recent past, the past year. But also to have a clearer vision for where he may be taking me, us. To somehow mark that he knows the plans he has for us: the gift of a future and a hope.

The Road to Character

Friday morning, David Brooks is coming to speak at the college across the way. I am trying to decide whether I am going.

Seeing his name in print puts me in a tailspin--that vermilion cover, the silver bookmark. I took it with me while I waited, and then I left Hillsborough radiology without it; after realizing this I turned around in the Applebee's parking lot to go back and collect it.  I read it as I waited for the very first of the series of tests that would eventually lead to the diagnosis of recurrent, stage IV cancer. Upon my return the staff found it for me at closing time on a Friday. On the way out I took a call from my doctor in the parking lot. We talked about the plan for Monday--an MRI, the possibility of needing to return early to California. So much unknown. Then I drove back out to Applebee's to meet the family for dinner as we celebrated the end of the homeschooling school year. I was done teaching.

Saturday morning we took the train into Manhattan as planned. We went to the top of the Empire State Building, not as planned, but as a surprise treat.

It was a clear day and we could see so far out ahead, in all directions. The breeze and clarity were a gift as I fought to keep my vision from closing in toward the focused tunnel it was becoming, even then. Later, we got on the A 8th Avenue Express by accident and went all the way up to 145th street. How we laughed at ourselves. And then back down, 64 blocks (on another train). We walked and museum-ed and picnicked in the park and later went downtown.

Saturday we played and Sunday we went to church. I stood at the front and read off-book from the first half of Isaiah 6.

“Holy, holy, holy is the Lord of hosts;
the whole earth is full of his glory!” 

When I went back for the MRI on Monday, I took the book back with me. As I waited, I waded through a section on suffering. I read:

"...Suffering gives people a more accurate sense of their own limitations, of what they can control and not control. ..Suffering, like love, shatters the illusion of self-mastery...It teaches that life is unpredictable and that the meritocrat's efforts at total control are an illusion. 

Suffering, oddly, also teaches gratitude. In normal times we treat the love we receive as a reason for self-satisfaction (I deserve to be loved), but in seasons of suffering we realize how undeserved this love is and how it should in fact be a cause for thanks. In proud moments we refuse to feel indebted, but in humble moments, people know they don't deserve the affection and concern they receive."

I remember pausing, thinking that I was going to need to remember that.

I was soon called back for my MRI and later drove back to our home. As it turned out, the ink wouldn't be dry on the radiologist's report before I had an airline ticket back to Los Angeles for the following day. I spent the evening packing up what I could of our year in Princeton; the book was not able to come along. After finally getting to my turn at the top of the waiting list for it at the Princeton library, it was to be returned unfinished, along with the other books from my nightstand.

In the scope of the mourning that I have done, unfinished books seem such a little thing. In many ways they are. My year has been such a one as to accrue many similarly seemingly inconsequential losses (and just a few larger ones)--the sum of which happens to be nothing more or less than the loss of life as I was expecting, planning, assuming it to be. Whatever that was.

There are pros to this, as well as cons. Unfinished books are not the same as unfinished stories. Now when I head out to drive carpool I often mutter or shout "Living the dream!"--stealing a line from my sister--because I am so grateful to be doing what I am doing, and for the hope that more days are coming. There are twists and turns in the road, and that is something we all have in common. "This is not the end, but it is the road." And it goes on.

Brooks was right; I have been deeply grateful for many things. I think I will go tomorrow, after all. 

A-Waiting

As I mentioned in my last post, this fall has been hot. Hotter-than-summer hot. I have been waiting and waiting for fall to come. It has been in the 90s and 100s at our house, every day.

This year is hotter than past years, that is certain (I think--right? I haven't been in Santa Barbara for fall since 2012). When we first moved here, fall came with cool and rain and meant the end of fire season. Now, we have fire season all the year 'round.

Last Thursday morning we woke up to a 6 am text from emergency services. There was a wildfire burning in the hills behind our house. We walked outside and could see the huge plumes of flame cresting the ridge in the darkness.

We started packing, quietly, before the kids got up--not wanting to worry them. Two of them are old enough to remember the night in 2008 when we spent about fifteen minutes grabbing children and (the most random) things and heading to the Westmont gym for shelter, the burning embers raining down on us as we went.

Thursday, we knew that a repeat was unlikely; but nerves jangled as everyone remembered. And while we sat under evacuation warning and ready to go, I was still reticent to pack everything because it's work to get ready and it's work to unpack again.

(Note: experienced packing in evacuating can be revealing: for example, I should maybe never buy any clothes but grays and the blue-green spectrum). 

We spent some time watching the smoke, and took a field trip to watch the helicopters basing out of a field at Westmont. That was very cool, even when it kicked up a wave of dust and leaves that hit us like a wall.

The day was surreal. There was no immediate crisis and so normal life continued, with all of its rhythms and responsibilities. I drove carpool. The college held classes. Yet all the while there was an awareness that if the wind turned and picked up, --as forecast--all sense of normal could go flying out the window in a hurry.

I wanted to resist being hysterical or paranoid. Yet, those of us who experienced that devastating fire no longer have the luxury of just assuming that everything will be fine. For a visual, here is a video of our own street from that night, to give an idea of what we knew was possible. And so we quietly braced ourselves.


I spent the day going back and forth between searching the internet and the horizon for news of the fire, and trying to live the normal things I was called to do. Laundry. Piano lessons. Somewhere in the midst (I was walking to the mailbox) I realized how well the morning represented how I am living right now in terms of the cancer.

In this case the crisis is past; but I no longer have the luxury of just assuming that everything is going to be fine. I already felt that way in May, when I first found the lump. I know that lumps can be anything, and perhaps most often are something else-- cat-scratch disease, for example.

But I had experienced that it was plausible that it could mean what everyone dreads, the same way we know the wind can whip an inferno our way.

We find ourself in a season of waiting right now, not unlike the waiting on the wind we did on Thursday morning. This time we are waiting on the next round of scans. As with the fire, I am unwilling to panic and yet there it is, just beyond the ridge. And as with the fire, I have absolutely no control over how things will go. What is coming? I am grappling with what it means to live into the normal while still...waiting. One wants to be prepared, and yet not waste time preparing for what may never come. That seems to me a fine and important line.

I wish I had a tidy little summary for the way forward, but I don't. I imagine it involves looking ahead and preparing for the things that are inevitable and promised. I am certain it means looking for hope where true Hope is to be found. In the meantime there are many moving parts and moving people, and we are not waiting alone. Thursday I had a friend text with an offer of welcome, even though we had not yet been evacuated. Just in case. And last June a friend came to Los Angeles to go with me to appointments--and brought her toothbrush. Just in case. It turns out I needed her to stay.

And so as I figure out how to prepare (and how not to prepare), I have these many examples of how God has provided for me and for us. And that is a comfort as we wait.


To follow my SarcomaSummer2015 playlist, I built a new one for this season: A.waiting Fall. Here it is in case you want to groove and dance and sing along with me. I'm a little embarrassed at how familiar Nutmeg already is with all of these. "Motorcycle Drive By" is one of her favorites.

On Thursday, the winds stayed low. The emergency response was swift and thorough.  No evacuation was necessary, no houses burned. But all day and into the night we waited. And in the morning, we gave thanks.

Happy Halloween--and we're baaaack!

Yesterday was Halloween. It was a full day that ended well. It was also, in the heat of the afternoon, 103 degrees in our back yard. One hundred and three. Halloween. That's important for later.

Last year, we drove home from a fall weekend in upstate New York with family--Camp Covington 2014! On the way, we stopped at a front-yard farmstand and bought our pumpkins. Huge ones. We put our $4 per pumpkin in the coffee can they had set out for the purpose.

For Halloween 2014, we were at home outside of Princeton. Our neighbor on the dark country highway told us that trick-or-treaters never, ever stopped at our small cluster of houses in the dark with no sidewalk. So we cheerfully all went together to trick-or-treat in the neighborhood she advised. It was a delight to walk with J while the troupe trooped. We never all get to walk together because someone has to stay home to hand out treats. It was my favorite year. They had chosen a Spanish theme and coordinated their outfits. Nona supplied the matador and bull outfits. I remember thinking, "This coordinated group-think won't happen again."

But it did, sort of. This year, Pixie knew she wanted to be Scarlett O'Hara and we had all of the pieces for Dorothy from Oz in place already. The boys rallied around the idea of old-school characters and chose the Lone Ranger and Zorro. Although Pixie was old enough this year to go trick-or-treating with friends, the other three hung together with me and we enjoyed a sweet evening.

Two years ago, we were in Madrid for Halloween. The kids wore souvenirs we had bought (masks in Venice!) and handed out candy to the students, who came to our apartment on the way to a Halloween party the program hosted off the Puerta del Sol. We haven't been home for Halloween in a long time.

So, this year it was fun to be back in town for Halloween. This week ended with a little bit of chaos, and I was glad to wrap things up last night (and to get an extra hour of sleep!). Part of the chaos was a wildfire that started in the foothills behind our house on Thursday morning. Part of it was a Fall Festival at school on Friday, in tandem with flag football and ballet and all of the usual Things. By the time Halloween rolled around, it was Pixie's third time in her costume. This year when carving pumpkins, J broke out the jigsaw. I think it will become a staple.

We are all grateful to have made it to Sunday, on which we have worshipped and rested and had a neighbor up for burgers for dinner. And eaten chocolate, of course. What's your favorite Halloween candy?

This morning at breakfast I gave the kids the Cliff Notes version of this blog post, which asks whether Halloween might be more Christian than Christmas. I recommend it. It resonated with our kids, who are familiar with their Boppy's "Christmas Goody-Goody" song.

I remember that at the beginning of this post I said that 103 degrees was important for later. It still is, but I've moved those thoughts to a different blog post because I haven't yet wrestled them into order. Soon.