Monday, December 24, 2012

Christmas Eve

It is not coincidence that "invalid" (a sick person) and "invalid" (being without any foundation of truth) are both from the same root, meaning weak.

As I pen these words on Christmas Eve night, I am under medical house arrest. Thanks to a wild combination of screwy factors, two large veins blew out on Friday and I am a mass of bruises. Painful, swollen bruises. When I saw Dr. Tom today (the husband of Dr. Pat, my doctor), his eyes widened in surprise at the extent of the bruising. I'd had a racing, half-crying phone call with Dr. Pat the night before and she had briefed him well knowing he would see me today. However, the visuals proved yet once again that a picture is worth a thousand words.

Once Tom ascertained that I was medically stable, he cut to the chase. Go home and rest NOW. Do not do ANYTHING.  Tom has a soft delivery, but there was no mistaking the emphasis on NOW and ANYTHING.

We are old friends, Tom, Pat, and I. He looked me with a sad smile. "I would like to wrap you in bubble wrap to keep you safe for the next few days."

Point taken.

I was in tears when I called Warren and gave him the results of the appointment. "I can't do anything," I wailed. "Tom said go home and rest right now." I don't think I said it out loud, but I thought I'm an invalid for the next few days.

An invalid. I felt invalidated. I can't do anything. I can't help prepare for Christmas Day dinner, which we are hosting. I can't finish shopping. In one swift move, I was sidelined.

In short, I was moved, temporarily I trust, from "April in treatment for cancer" to "April, the invalid."

I saw Dr. Tom early in the morning. A lot more tears fell before noon. I'm tired. I hurt a lot. I cry out every time I see my bruises (concealed beneath clothing) and again when I move or shift around. I hate sitting on the couch while Warren does everything.

I hate being an invalid.

Warren is taking great care of me and the multitude of tasks that need to be done before tomorrow midday. I have made peace with not being able to complete shopping the way I had planned. I am making peace with the thought that I may not be baking tonight.

After all, it is Christmas Eve. David just came through the door for the night. We are all together.

And maybe that's my takeaway from this whole mess. We're together and it's Christmas. The bruises will fade and heal. It's Christmas. Ben called earlier and I talked to him, Sam, and Alise while Ramona tried out her new sounds in the background.

It's Christmas.

And that is enough.

Tuesday, December 18, 2012

What Alise Said

When I posted Saturday about the Newtown massacre, I could not pull up Alise's thoughts and had to instead paraphrase them. Here is what Alise wrote:

I don't care to know who the gunman is or what his f**ked up, useless motivations were. Media scrutiny and attention paid will only lead to further violence as our country continues to obsess over the actions of increasingly troubled individuals. I honestly don't even care about the greater implications that this event has on the subjects of mental health care and gun control in this country.

What I care about right now is that there are [28] people dead, [20] of them children. Parents lost their babies today, and I want to know who they were. I want to know what colors and books they loved, what their favorite games were, what they wanted to be when they grew up, so that we can mourn their loss in specific and concrete ways, and not in the abstract. Tell me who they were, so we can offer our prayers to their loved ones with some sense of honesty and truth. So that we can offer some thoughts to make those children's journey to the spirit world an easy one. I want to think today of those beautiful children that will never get the chance to grow up, and leave the gunman and his motivation to rot in the waste bin of history.

I spent most of Sunday baking too, and as I baked I thought about those little children. I love Alise's call to mourn their loss "specific and concrete ways."

I work at the juvenile court here in Delaware and the flags were hanging quietly at half-mast Monday morning when I arrived. Far harder was the mediation I had at one of our local elementary schools an hour later. It was sad to walk into the school, the flag half mast there as it is all over town. It is was heartbreaking to sit and watch the kindergartners bring the attendance records to the office, skipping and tiptoeing in with pride and excitement over being the attendance monitors. 

They are just little children.

Jonathan Kozol, in his book, Ordinary Resurrections, writes about very young schoolchildren and how they are at the mornings of their lives. He starts out with Thomas Merton's observation that birds, first thing in the morning, "ask God if it is time yet to begin the day." Birds, after making a series of chirps and sounds but not yet breaking into song, ask God "if it is time for them to 'be.'"  Little children, said Kozol, are much the same: "It may be nearly lunchtime in the world but, for this little girl, it seems as though it's only a few minutes after dawn...Soon enough she'll brush the cobwebs from her eyes and take a clear look at the world of vowel sounds and subtrahends...and some bigger things that lie ahead, like state exams, but not just now." 

The burials have begun in Newtown and the world moves on. Before we all move on, though, let us mourn those children in "specific and concrete ways."

And let us celebrate and keep safe all the other children who are awakening and asking "if it is time for them to 'be.'" 


Saturday, December 15, 2012

Baking the Morning After

It is the morning after and I am baking.

28 families in Newtown, Connecticut are making funeral arrangements, 20 of them for small children who did not live to see Christmas this year.

And I am baking.

My mind keeps churning over the news. My thoughts reel back to Columbine and watching the news that night with my hand to my throat and the tears rolling down my face. This morning as I read the online newspaper, my hand went immediately to my throat and the tears started again.

And I am baking.

My wonderful, beautiful daughter-in-law Alise mirrored my thoughts on her Facebook post last night and I would repost her words here if I could. But Facebook is balking so I am able only to summarize them. (I will post Alise's moving words in a separate post in the next day or two when Facebook decides to cooperate.) Alise cried out to us to focus on the children who were killed, not on the killer and what made him tick. Forget him. What Alise wanted to know is what the children's favorite colors were, could they tie their shoes, what games they liked to play. Alise wanted us all to remember these were children, with the little things that make up a child's life: a favorite book, a stuffed animal, a song sung in class.

And I am baking, filling the house with the scent of biscotti, wondering what cookies those children liked and whether they had yet done any holiday baking with their mothers, their fathers, their grandparents.

I think of Ramona as I roll the dough with my hands. When Ben was a little boy, there was the Cleveland School shooting in Stockton, California, where we lived at the time. We were horrified. And then came Padukah. And Columbine. Yet despite that violence—violence at a school—I still sent Ben and Sam off each day with my biggest worry being a traffic accident.

Those were just random acts of violence, I thought at the time. But increasingly, they are not. And as I look at Ramona in all her three-month old glory, I fear her parents live in a world—in this country, for God's sake—where they will send her to school someday and pray she not be gunned down in her classroom while she recites her ABCs.

And I am baking.

In Making Piece, Beth Howard wrote: "In those late autumn days, as winter approached, all I did was bake. With each push of the rolling soul was soothed and my heart mended a little more."

It is the day after Newtown and I am baking.

Monday, December 10, 2012

Update from Cancerland

I have just finished the first cycle of chemo. This is my week off.

It is all new and I am still finding my way around the different landscape. Sometimes I think the road goes that way, and instead it goes way over there.

In the big picture, I am doing very well. I am feeling better overall and have had more energy in the last three weeks than the last three months. My gains are measurable and real. 

That being said, being ill again is a drag. In the small picture, some days are just plain hard. I am weathering chemo well and not having severe reactions to it, but even the milder reactions weigh me down. Chemo takes a toll. Despite the resurgence in energy, there are nonetheless personal limits. Some nights I struggle to make it to a reasonable hour ("reasonable" meaning at least 9:30 p.m.) before crashing. 
 I don't enjoy the steroids I take once a week and the havoc they wreak with my body clock. 

As I said, it's a drag being ill again.

My biggest problem is of my own making. I have a hard time recognizing my own limits. Well, to be honest,  I often recognize them and then just blow past them. As a result, I tend to overdo all of my days, including chemo days, which means I pay the price for the next day or two afterwards. It is hard to relearn to take care of myself first.

I recently had coffee with a friend and talked about my recent decision to take a sabbatical from the active part (the Tuesday night part) of the Legal Clinic. I am laying the groundwork now for others to step into my shoes. I told my friend I knew the decision was right, but I struggled coming to it. 

"Because you are giving up power?" she asked.

I thought about that for a moment, then said, "No, it's having to admit that I cannot do the clinic right now. That's hard." 

I mean that. I have no problem with stepping out of an activity, even a beloved one, and gracefully ceding power to a successor. But to say out loud, "I cannot do this?" I have to swallow hard to get those words out.

For the most part, I do not worry about the myeloma. The cancer is what it is. But I do worry about its impact on my dear husband. At times I feel as if I am coming to him, with both hands full, saying, "I bring you my illness." (Surely Walt Whitman did not anticipate that scenario when he wrote "Song of the Open Road," which is what keeps coming to mind when I present Warren with this reality.) Warren doesn't see it that way, but I sure do at times. (Perhaps it is a side effect of chemo that I cannot think through my days without drawing on poetry: what a wonderful side effect that would be!) 

Overall, I am grateful for the treatment and grateful that it seems to be working. I seem to be responding positively to it and for that I am blessed. I am also blessed beyond words to have tremendous community support.  While we have not had to ask for assistance (meals, rides, you name it), it is nice to know that army of supporters is out there. 

As I type these words, Warren is at a Symphony board meeting. It is mid-evening and I am tired. Whatever chores are undone for the day will keep until tomorrow. I have gone all the miles I need to before I sleep.

Tuesday, December 4, 2012


"Something's on fire!"

Warren was out of his chair in a minute, as was I. Smoke was billowing up from the burners of the stove. Throwing open the oven door (more billowing smoke), I quickly assessed the situation.

Nothing was on fire, but bits of exploded batter had dropped down through the racks onto the heating element and had started to smolder.

Earlier that morning, I had carefully made a chocolate chiffon cake batter so I could later craft a dessert to take to our friends that night. The last step required whipping six egg whites until they stood in stiff peaks.

It was a great batter. It had a beautiful sheen and a nice heft.

In filling the cake pans, though, I should have known better. The 8 inch pans, the size called for by the recipe, were filled to the brim. Against my better judgment, I slid the pans into the oven.

Chaos followed. The batter rose. It rose some more. It began to quiver as it rose over the pans. And then the cake batter—both pans worth—exploded.

Once we cleared the kitchen of smoke and once I dumped the batter (which was not baking properly and indeed, could not bake properly), I thought through the situation. We were due at Margo and Gerald's at 7:00. It was still morning. Go to the store, get a box mix, and get it done.

I did. There were some later fluffs and tense moments, but it got done. Late that night, sitting around the fire ring, we laughed over the poor exploded cake while eating the end result.

Last night was another explosion. Not a cake this time, but a person. Me, in fact. Like the cake batter crammed into the 8 inch pans. there was too much of me in too small a container. I bubbled and churned and tried to rise above my discontent. But in the end, like that wayward batter last Saturday night, I exploded.

Warren has a very demanding job. He works very long hours with very little staff (albeit excellent, excellent staff) and not enough support. Concerts weeks, and this is one of them, mean even longer and later hours. This week, starting last night, Warren will be at a Symphony something—a committee meeting, a rehearsal, a board meeting—every single weeknight through next Monday. (The concert will take up much of Saturday and all of Sunday.) That includes Friday too.

Every. Single. Weeknight. Plus Saturday and Sunday.

At so many levels, starting with my love and support of Warren, I "get" it. I know the broad and deep reach of his position. I know his Board, made up of good, decent people, does not demand this of him out of callous disregard. I know Warren gives his heart to the Symphony and that a large part of its increasing stature in national orchestra circles is due to his vision, drive, blood, sweat, and tears.

I really do get that. And I am so proud of him and this Symphony.

But now I'm sick. Now. Not theoretically, not "oh, the myeloma will be back someday," but now. Now I'm in chemo. I have moved from the quiet countryside of Cancerland into a downtown apartment over the main drag, with cars going by at all hours and red flashing neon signs lighting up the walls in the still of the night.

Now I have needs which, for the first time since Warren and I became a couple, trump—at least in my mind—any card he may hold in the Symphony's hand. I have taken all the tricks, I have laid down four aces, I have shot the moon.

And this week it doesn't matter. I am sitting at the card table with my royal flush fanned out and the card game is already over.

When Warren walked in from his meeting last night, I asked to talk. I tried to stay calm. I "get" that this is not Warren's doing, that it is not personal, that it's not about me or even about us.

I said all those things and then I burst into chunks of raw batter, just like the cake. I held the winning hand and I wept because I could not rake in the pot.

Warren quietly sat through my outburst, holding me close while I wound up and then wound down. He sat quietly while I ranted about having to act more "normal" than I am feeling so as not to worry him while he worries about the Symphony. He squeezed my hand while I gave voice to my fears and my dismay about the myeloma.

My game face is good. The chemo I am taking is not that bad. I won't lose my hair. I'm not that nauseated. My energy has already started to rise. My colleagues at work are supportive beyond words, as are my friends. My children (Ben, Sam, Alise, David) are there for me. Warren has not flinched in the face of what I am facing.

I am blessed blessed blessed and I know so every single day when I awake and every night when I fall asleep.

Yet the cancer takes a toll—physical, emotional, mental—on me. Myeloma is demanding. It wears you down with its slow relentlessness. There is no winnable war here. (Yes, you win the battles, but ultimately myeloma wins the war.) And last night I was battle sore and weary, and Warren bore the brunt of it.

When we got around to dessert last Saturday night, everyone oohed and awed. Despite the failed batter and the substitute box mix, and despite the haste in the later afternoon (shaving those dark chocolate curls and willing the glaze to set), the cake was finished. The mousse hid the smaller layers, some of which had cracked in assembly, and patched the pieces together well. The cake platter was large enough that the glaze did not pool onto the table. We all savored each bite. When the evening ended, I left half of the remains with Margo and Gerald and the other half came home with us.

When I was done exploding last night, Warren patched me together much like Saturday's dessert. He patched me with thoughtful listening and quiet love. He poured a glaze of understanding and comfort over my bruised spirits.

And then he served me the very last piece of the chocolate mousse cake.

Sunday, December 2, 2012


Ramona is three months old. Yesterday, in fact, marked the end of the first quarter of her first year in the world. We were at Margo and Gerald's the Saturday night that Ben called and said, "She's here." In a wonderful serendipitous turn of events, her anniversary was also a Saturday and we were again sharing the evening with our good friends Margo and Gerald. We all celebrated Ramona's three month anniversary with a shared amazement that she already that old.

I have yet to hold Ramona is my arms, although I have pored over the many photos of her and have seen her when skyping with Ben and Alise. In this short amount of time, she has gone from being a Baby Blob to being firmly entrenched in the land of Babyhood. I see new expressions in her face, I hear of new feats of dexterity. I long to see and meet her in person.

The incomparable E. B. White wrote a small poem after his son Joel was born, "The Conch:"

Hold a baby to your ear
   As you would hold a shell:
Sounds of centuries you hear
   New centuries foretell.

Who can break a baby's code?
   And which is the older—
The listener or his small load?
   The held or the holder?

I think of White's words when I study the most recent photos. I look at Ramona's little face, at the deep, solemn look in her eyes. I see traces of all her heritages in her: Chippewa, Cuban, WASP. I wonder what she is already thinking and what she already has known for centuries.

I cannot wait to hold her to my ear.