Inch Ninety-Eight: 2015 By The Numbers

As we all prepare to wrap up the year, I have whiled away the hours thinking of things I could count for 2015. It turned out to be a fun exercise.

This is what 2015 looked like for me:

Number of blood draws/IV sticks (successful or not): 30 (probably low)

Number of times my new port has already been used to great personal acclaim: 4

Number of trips to Portland, Oregon: 2

Number of trips to Rochester, Minnesota: 2

Number of times I walked through the grounds of the Alamo: 3

Number of states I was in or drove through, not counting Ohio and not counting flyovers: 12 (I had originally posted 11, but Warren reminded me of Iowa)

Number of days old Ben was as of December 16, when he turned 30: 10,958

Number of  days old Sam was of as June 28 when he turned 25: 9132 

Number of days old Ramona will be as of today, December 31: 1217

Number of presidential debates watched this year, either party: 0

Number of bowls of oatmeal eaten for breakfast: 260 (more or less)

Number of batches of biscotti baked for the holidays: 10

Number of pieces of biscotti 10 batches make: Over 800

Number of batches of peanut brittle Warren made for the holidays with his son's help: 3 (plus 1 burned batch)

Number of Preservation Parks out of 9 we have walked in: 3

Number of concerts Warren played in this year (not counting rehearsals): 16

Number of concerts Warren played in that I attended: 13

Number of church services Warren played: 5

Number of church services Warren played that I attended:  4

Number of books I read: Ha! You think I keep track of that?

Number of Legal Clinics held: 12

Number of Legal Clinics at which I volunteered: 11

Number of clients served for the year: 228 (not counting the phone consultations) 

Number of poems written into final draft: 59

Number of poems written still in rough draft: 8

Number of 1000 piece jigsaw puzzles completed: 2

Number of hugs given and received: too many to count

Inch Ninety-Seven: O Tannenbaum

Thank heavens for good friends. It was my good friend Margo, commenting on live Christmas trees, who said that she and her husband had learned over the years that rather than agonize over which tree looked the prettiest or had the best shape, just pick one and take it home. Once decorated, the tree would look just fine.

I took her comments to heart this year. By last Sunday night, I was able to report to Margo that our tree was up. We had picked it out in record time ("How does this one look?" "Looks good.") and moved it into the house Sunday morning. By nightfall, Christmas had arrived. 

The deed was accomplished by two exhausted, weary, one of them sore and limited in activity (I had a port put in last Friday), aging (sometimes rapidly) adults who realized after a long weekend of concerts and rehearsals (mostly Warren, of course, but I accompanied him to a Sunday performance in Mansfield, Ohio, an hour away) that if we didn't do anything Sunday night we would not get the tree decorated at all. AT ALL.

The tree is shedding needles voraciously. If you walk by it, it sheds. If you twitch while sitting in the same room, it sheds. That's okay. While it shed, I spent an hour opening ornament containers (i.e. large plastic tubs full of stuff) and pulling out a handful of things—let's do this one, not this one this year. There were lots of ornaments in the second group. We hung them up (Warren taking the bulk of the hanging duties, as I was culling ornaments) until Warren suddenly said "I am exhausted and can't hang any more ornaments." At that point, we had just three stray ones left on the couch, and I put those on. Lids went back on the containers and we were done.

And you know what? The tree looks just fine. Especially with the tree lights lit and the room lights dim in the evening. (Did I mention that one string of lights bit the dust when only half the string lit? And that we made do with the remaining strings we had?) So thank you, Margo, for the "just pick a tree and it will be fine" advice. Because in the end, it is just fine.

And the front door wreath this year? 

The raffia wreath on our front do

We bought some roping when we were out buying our shedding Christmas tree. We have a wreath frame made of a coat hanger and Warren lashed some of greenery to it. (The rest of the greenery was tied to a former timpani head that broke last year and is now repurposed into a most excellent outdoor wall wreath.) A good friend sent us a gift basket that was tied with raffia. We eased the tie off and it was headed to the trash when I realized that with one snip it would make a folksy bow with streamers. Warren made it the next day or so and it too looks just fine.

So here we are, the day before Christmas, decorated with bits and pieces of our daily life.

And you know what? It looks fine. Just fine. 

The wreath made from a former timpani head

Inch Ninety-Six: Change of Routine

High up on the facade of the town's old high school, now in its last days as a middle school, is the inscription "New Occasions Teach New Duties."

I am in the middle of a new occasion.

After eleven years of having almost all of my oncology appointments, labs, and treatment handled locally, I now drive 45 minutes to reach my oncologist and his office. My oncologist is no longer affiliated with our local hospital (owned by a behemoth centralized non-profit corporation). Many of his patients, when the break came abruptly, followed him to his home office.

That's the new occasion.

I am still learning the new duties. The new location is a stand-alone oncology facility, about the size of a small, regional hospital. In atmosphere, it is more like the Mayo Clinic than any other medical facility I have been in over the last eleven years: soft colors, no blaring televisions, soft words from staff. They know who I am and what my treatment is without missing a beat.

But I am the new kid on the block. I don't know my way around the building yet. I don't know any of the staff by face yet (let alone by name), I don't know much of anything.

I don't know the faces of the other patients. At the old place, I generally knew half the waiting room as friends (and family) from the community, not just as cancer patients. Here they are just all cancer patients, at least for now.

As I write this, sitting at the Zang (the nickname for the new facility), it is ten days until Christmas. The Zang is decorated for the holidays with wreaths, poinsettias, and red and green ribbons everywhere. The lobbies and the central desks are festive indeed. There is a quiet fountain (the overflow type. not the spouting type) behind me, with water running down onto the rocks surrounding the copper fountain bowl. As part of the holiday decor, three oversized red globes float on the water.

My oncologist, whom I know well after more than eleven years. is clearly more relaxed and at home here. This is, along with his partners, his building, his practice, his baby. Pride of ownership shows.

With time, I will fit in and be my usual self. For now, though, I am smack in the middle of a new occasion. For now, I am concentrating on how to find this place, and where to go once I find it, and waiting for the new feeling to go away. And for now, I am learning my new duties.

Inch Ninety-Five: The Tiniest Bits of Light

My blood pressure is up. Not alarmingly so but enough that my family physician yesterday took a second reading, convinced the first was false. Her eyebrows raised when the second reading matched the first.

I cannot say I was surprised. Dismayed, yes. Surprised, no.

I have been walking around for days now with a tight chest, a fist clenched in there that I cannot seem to open. There is so much turmoil and trouble these days: internationally, nationally, locally, personally, internally. I can't seem to set it aside or gain any perspective or see my way through it. Each night I drop into bed, grateful for the dark, grateful to turn over and hold Warren, my safe harbor. But the clenched fist is there when I awake, and I carry it through the day with me.

It is clenching right now, as I write these words.

It is Hanukkah; tonight is night seven and my menorahs will be ablaze. The outside world has butted into Hanukkah as well. You are supposed to light the candles at sunset, but some nights I have not, can not, light them until much later. Last night with our schedules and the Symphony and other obligations, it was 10:00 p.m. until I lit the candles and we stayed up until 11:00 as they burned down.

The candles make such a brave light at the dark time of the year. Rabbi Lawrence Kushner reminds us that these tiniest bits of light help us remember the divine presence.

I am trying to remember that, but I am not overcoming the clenched fist.  

I am waiting for a miracle.

The late writer Chaim Potok wrote a short story about Hanukkah,  "Miracles for a Broken Planet." It is a childhood memory of observing Hanukkah in New York in 1938, a month after Kristallnacht. Potok does not understand why God allowed Kristallnacht to happen. He goes through Hanukkah dreaming of shattered glass and burning synagogues and wondering where God was. 

It is Potok's father who finally addresses the situation:

On the eighth and final night of the festival I stood with my parents in front of the burning candles. The darkness mocked their light. I could see my parents glancing at me. My mother sighed. Then my father murmured my name.

"You want another miracle?" he asked wearily.

I did not respond.

"Yes," he said. "You want another miracle." He was silent a moment. Then he said, in a gentle, urging voice, "I also want another miracle. But if it does not come, we will make a human miracle. We will give the world the special gifts of our Jewishness. We will not let the world burn out our souls." 

The candles glowed feebly against the dark window.

"Sometimes I think man is a greater miracle-maker than God," my father said tiredly, looking at the candles. "God does not have to live day after day on this broken planet. Perhaps you will learn to make your own miracles. I will try to teach you how to make human miracles."

Potok reflect on his father's words and does not believe his father can ever teach him how to make miracles. It is only in looking back that he realizes his father "taught him well."

Our planet is broken. Violence, terrorism, racism, bigotry, intolerance, refugees, poverty, hunger, homelessness: all the ugliest words in the dictionary are strutting their stuff right now. Add to that my personal bundle of health worries and grief and stress and it seems overwhelming. 

No wonder my chest is tight. No wonder my blood pressure is up.

But the candles are burning, bringing their tiniest bits of light, reminding me of the divine presence. 

And I believe in making miracles. Small miracles. One at a time. 

Inch Ninety-Four: Standing Down

I am finally standing down.

For the uninitiated, "standing down" is a military term meaning "a relaxation of status of a military unit or force from an alert or operational posture." 

I recently realized that I have been, mostly unconsciously, on alert, trying to create around Ramona the wall of books with which I sheltered Ben as a young child. And here's the thing that finally hit me: I don't have to be on alert. 

I can stand down.

I can stand down because, quite simply and beautifully, Ramona doesn't need protected like that.

Ramona is part of a secure, loving family made up of her parents, Papa and Nana, Uncle Sam, Auntie Jenna and Uncle Cholo, and other family and friends. Unlike her father and to a lesser extent her Uncle Sam before her, Ramona does not need protected from a vengeful parent, a depressed parent, an alcoholic parent, an angry parent. Ramona can be her own bold, funny, confident, secured, loved and loving self day in and out. 

This realization on my part started to come to a head when I recently attended a conference session on the impact of chronic intense stress on the developing brain. Listening to the neurobiologist describe the chemical and physical consequences of chronic stress of a child's brain triggered a PTSD (post-traumatic stress disorder) reaction in me. With deep breaths and some mindful thinking, i managed to make it through the session, but it shook me up. The speaker's descriptions brought up painful memories of my sons' childhoods and my inability to fully protect them from the emotional chaos and conflict that marked our family. Each child reacted differently to that conflict and both of my sons still carry scars and quirky coping mechanisms today as a result.

My intense response to the speaker surprised me, catching me unawares as it did. But people with PTSD can have episodes triggered by innocuous circumstances, and I chalked it up to that.

Then came the books.

Books are important to me. They are important to Ben and Alise. They are important to Ramona. who is starting to puzzle out the sounds of the letters in her books. She lives surrounded by books: a house filled with books, her own bookcases at both her parents' house and Nana and Papa's house, and even her own library card. Ramona is not book deprived, to put it mildly. She already owns a number of titles that duplicate books I have here in Ohio.

So why did I have a small but plainly PTSD reaction when I made plans to ship some of the dozens of children's books to Eric and Brandee, Ben's cousin and wife, for their daughters Frida and Frankie?  It wasn't that I didn't want to share the books with Eric and company. I knew his girls would enjoy the books. These were books I read to Ben throughout his childhood, wrapping him in the comfort and security of the stories. (To a lesser extent, I read some of these books to Sam, who when young was not interested in being read to most of the time, being more interested in being on the go and chasing after his big brother and his friends. Different child, different needs.) I knew Frankie and Frida would enjoy them. 

What was going on?

I texted Ben my intentions, and he texted back immediately that he had no problem with my plans. I still put off filling a box for another week. Then I sat down by the bookcase and began to sort through the dozens of books, culling a bright assortment for the girls.

My discomfort finally revealed itself as I chose titles and started to flip through pages. I was afraid that I would leave Ramona unprotected if I didn't hold onto the books. I was afraid she would have no shelter. I was afraid she would not have the security of my library to hide within. 

I was afraid of things which have no basis in reality. Ramona's childhood is not her father's childhood. Ramona has Alise and Ben and unconditional love and that has made all the difference. 

When I realized that, I took a deep breath, books scattered around me. These books were going out to Oregon as gifts from one generation to another, not from mother to son to his child but sideways from one-time aunt to former nephew to his children. It was a perfectly good gift, full of adventure and love.

With that understanding, the weight lifted off my chest and my breathing calmed down. I chose the books with zeal and wrapped the box tight after slipping in some titles for the grownups as well. The books went west and I am waiting for confirmation of their delivery. 

And the joy of books. Yes, I am waiting for the joy of books. Because I am finally able to stand down and see them as that: bundles of joy. 

Inch Ninety-Three: Thankful

He had just backed his car out of the parking slot and put it into drive, when the engine died.

I was walking past headed to the medical building and looked over at the sound. I know the heartbreaking sound of a dying engine. Our glances met briefly, then he stared at his dashboard and cranked the engine.

It caught, reluctantly at first, then more solidly, and he eased it out of the parking lot and into his his day, whatever that day held for him. Was he thankful that the engine turned over one more time? Maybe. Probably.

Thankfulness.

My job as a mediator brings me into contact with people across the broad socio-economic spectrum, from those who have a lot to those who have almost nothing. The truancy season has started in earnest so now I am in the schools regularly mediating attendance issues with parents and students.

I recently mediated with a young single mother hanging on by her fingertips. She was one of those women who have to count and recount every last penny in the purse before making a purchase. Yet her face glowed when she talked about her children and their education, and about doing better for them. Despite the hard times she struggled with, this mother was thankful for her boys and the richness they added to her life.

Thankfulness.

It is that time of the year when the days grow shorter and the nights deeper. In another week and a half, I'll be lighting Hanukkah candles to push back the dark. My thoughts invariably turn to the year that is rapidly winding down. 2015 has been a hard year, dominated by my older brother's illness and death. Dale has been dead for just over a month now and we are still groping our way through the loss. My own medical journey has grown more difficult and demanding and is an overlay to all of my days. (I am writing this out longhand as I sit through yet another chemo session.)

In San Antonio with Katrina

Am I thankful?

Yes. Unequivocally. I've been to Portland to see my family twice this year. I went to San Antonio
earlier this month and got to spend a day with my dear friend Katrina. I am surrounded by love and support in my own community. I share each and every day with my beloved Warren. When I finish this chemo session, I will head home and repot some plants and think about the pies I will baking later tonight for tomorrow.

How could I not be thankful?

Tomorrow is Thanksgiving. May you all find moments of thankfulness.

Inch Ninety-Two: Party On

Note: I write a monthly column for The Myeloma Beacon, an onsite resource for those of us (and our caregivers, family members, oncologists, and the public in general) with myeloma. Warren and I are just coming off several extremely hectic and packed weeks, including a concert last night. So for this square inch of writing, I am giving you my November column, lightly edited for this blog. (Another note: I have a wonderful, amazing editor at the Beacon, Maike Haehle. She makes me read great in print month after month!)

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Earlier this month, I held my third cancer party.

I threw my first cancer party when I was diagnosed with multiple myeloma 11 years ago. It was a big party. A really big party. It went on for hours, everyone brought food and drinks, and people were packed against the walls of my apartment.

What a great night.

Almost three years ago, when I relapsed and started Velcade, I threw another cancer party. I had lost physical ground over the years, I wasn’t happy about the Velcade, and it was time to party again.

Once again, everyone showed up and everyone brought food and drinks. Although the party was held in mid-January, the weather was fairly mild that night. That was a good thing because there were so many guests packed into our house that the indoor temperature rose and people spilled out on the deck to get some relief.

That was a good night too.

After I relapsed again this summer and began Kyprolis this fall, I looked at Warren and said “you know what this means, don’t you?”

He nodded. “Another party?”

Yep, another party.

I called this party the “Further Down the Road Cancer Party.” At 11 years out, I have no illusions about where I am on the myeloma spectrum. And my invitation reflected that:

Many of you were there for the first party in December 2004, when I was initially diagnosed with multiple myeloma. And from time to time, we’ve partied to recognize what a long, strange trip this has been.

Eleven years later, it’s time to party again! Why? Because I’m further down the cancer road and what better excuse than to raise a toast to good friends and good community? (And for those of you won­der­ing how I can send this invite out when my older brother is in the end stages of cancer, trust me, Dale gets that life goes on and he will be there in person or spirit or both.)

This was a great party too. Once again, we packed the house. Once again, the food filled three tables, all the counters, and the stovetop as well. Once again, people spilled outside when the inside temperature rose.

The rooms were full of people I care about, many of whom have been with me from the start of this adventure. My friend Larry and his wife drove down from northeastern Ohio to join us. Larry also has myeloma (13 years) and has been my constant companion in the myeloma world. They arrived early, and we four had time to compare notes about treatments, where we are this many years out, and how our spouses are holding up (magnificently).

There were some quiet revelations. My friend Doug, who has dealt with stomach cancer for several years, took me aside and told me that the cancer was back, in multiple tumors, and the prognosis is not good. We hugged hard; I sought out his wife and hugged her hard too. Mark, my poetry club friend, just recently received a diagnosis of chronic lymphocytic leukemia, and we have been talking about the reality of that diagnosis. We talked at the party too. Other friends asked me quietly about my status and prognosis.

The most noticeable absence was my brother Dale, who died last month from liver cancer. Dale was always the last guest to leave, talking long into the night with anyone nearby. He knew no strangers. My kitchen garbage can has a permanent crimp in the lid from his sitting on it at the first party 11 years ago, and I kept looking over at it, expecting to see him there again.

The reality of a cancer party is cancer.

But that’s not the only reality. The reality is that life goes on, and this party demonstrated that in spades. There was a lot of laughter and talk. There were hugs and stories. There were tall tales and taller truths. There were a lot of us just celebrating being alive and being together for now.

I don’t throw these parties to celebrate the illness. I throw them to thumb my nose at it. Myeloma is killing me, but while I am able, it will kill me on my terms. Those terms include good friends and good food and good talk. Those terms include loud laughter and funny stories and quiet comments and long hugs.

And those terms include my cancer parties.