peterandviola

[peterandviola]

Blog Again

When she passed away, Annie’s daughter Sue found a slip of paper that held  her Mother’s final wishes. Annie Menebroker didn't want a funeral. I wasn't surprised, for Annie didn't like a fuss made over her. There was a memorial, a beautiful thing made by friends and devotees of Annie's poetry. Well enough, but I felt I couldn't go. 

People still talk about it and post pictures of Annie. I am glad for everyone who did go, who felt Annie in their heart that day. But, I shed my tears privately, finding them in solitary moments in my writing studio.     

Annie and I had volumes of correspondence, letters, cards, and lots of email over years of friendship. We routinely sent 1st drafts of poetry, and cool judgments of our lesser attempts. As our cancers were diagnosed and proceeded on their grotesque and tragic rocky roads, I depended on her even more--and she on me. 

This week, I wrote the first really stupid chapter in my cancer memoir. There was no one to call, no one to say there was not much value to my effort, except as a pointless exercise for another try, another day.

As some of you know, I stopped writing in my blog, choosing instead to write about my life with cancer, something Annie and I shared in our life’s journey. Cancer, the unknowable. Cancer the scourge. Cancer, the killer. And now, there is another infectious devil, Covid-19, a vicious thing.

This morning, I have been reading the stories from other countries, while I talk to Annie in my head. "What do you think, Annie? Is it the end of the world?" 

There is never an answer, but today, suddenly and inexplicably, all the internet correspondence I’ve ever had with Annie jumped up from a mystery file on my computer. 

For more than an hour, I thumbed through it, and pleasure rolled over me, bathed me in friendship eternal.

I wanted so much to open a window and holler of her return to me. We don't know when these precious moments will come to us, but I honor it now with this, a love letter from me, “Tugboat” (as she called me) to my Annie.

Thank you, my Annie, for your unbidden appearance. You must have felt my wobbly early morning need. Your notes and letters and poetry are all here, in a place I haven’t looked these years of your absence. Yes, dammit, I miss you. Yes, I know you had to go. I feel it myself some times, that cancer villain’s seductive call, when one is too tired, too sore, too weak to go on. 

It’s all right. In fact, it’s everlasting. But I am selfish, and I want you back. We all do. Life’s lessons never get easier. In fact, for writers, they get harder. How to frame the words and life of deathless desire? I cannot say what makes it easier, for it always seems harder.

I admitted lately on Facebook that I have a fight song--a pop anthem that inspired me the first time I heard it in its entirety at the Invictus Games by people who had fought wars and lost parts of themselves in the process. I was thinking how you would have expected that from me, and how you would have grinned at the simple envoy line of the song, “I’ve still got a lot of fight left in me”.

I admit that it’s true, no matter how tired I feel, how lonely I am for the kind of friendship we had, I am lucky. I know. I have a loving husband, a lot of space to write, time and light that guides me, a little dog at my feet with kind eyes. But, my Annie, I will always miss you. Love, Tugboat

Thanks, Sue Menebroker McElligott, for your wonderful photos. 

[peterandviola]

Where the Blog Went

If you wonder where the blog went, I have an answer. A few weeks ago, I started re-reading it. Then, I made a very important decision.

I decided to write a memoir based on the blog.

I noted a number of things—that it was beloved by friends and family. Well-liked by most for the information it carried for you, and absolutely a labor of love. I remembered few things. Notably I thought of how horrible and hard Peter’s life became with me, the woman he married who gloried in her self-sufficiency. Yes, it was definitely a hard transition for a woman who thought she could do everything, sometimes seemingly at once, to someone who had to depend on help from ever sector—to eat, to dealing with pain, to understanding the massive undertaking that kept me alive. To him, I say, however difficult; however yucky, however lonely and unaccustomed you were to caregiving, you are magnificent!

Helpless and generally limp as I felt, you never gave up on me. When I take it in, now, it is indeed miraculous.

Six years ago, almost to the day (9/11/13) my left femur shattered. I went home with my new cane, thinking I might have bone cancer. 

There was no cancer in my family tree. If there ever was, my family motto was “never whimper” and there was hardly ever a noisy complaint. If you sawed off your finger at the mill, you left it in the woods, with a secret “Sumbitch,” then marched home at quitting time. And thus, I marched along, muttering, “I’m not afraid.” 

 Somewhere, it became the truth.

Dramatic events unfolded. Poor Peter was told I was dying, and probably wouldn’t live long enough to rehab. My soft spoken, outrageously strong husband would not allow this kind of treatment. He stood my side; he was my marvel, swinging a mace of command. Eventually, this is how we grew to feel about my cancer.

All along, we took pictures, wrote posts, saw friends, made friends, lost friends, kept a dog, and I learned to walk four times. I’m still walking, and now I am ready for the next stage of my life.

During this time, four books of my poetry have been published. My work was published with The Tough Old Broads in a compilation we called “Tough Enough” by Cold River Press.

I’ve written a few short stories that became part of the blog. And now, I’ve decided to write a memoir of my odyssey with Stage Four Renal Cell Cancer. I made my decision stimulated by you—loved ones who read the blog and encouraged me to think of writing a book that told more about this bloody wonder. Because, well, I’m still here, and it’s just about my birthday.

Six years have passed. I have trudged. I have prayed. I have marched. I have asked. I have believed. I’ve been NED (no evidence of disease), then, not NED, then NED again. There is no end to this, I hope.

And finally, I understand there is no way to know if I will ever be cured. Life on earth is finite, but a tragic story can be fueled with infinite joy. It’s a story I want to tell you.

I hope it is good. I hope you can see what it’s been like for us, and clearly noted the loving kindness that cloaks us, and how it is to count you among “Team V” as our friend Mikey named us all. And one more thing, a blessing on your house for the many blessings you heaped on ours.

[peterandviola]

It’s Scanxiety time again.

Six months since my previous scans, which all looked fine, a few days since my visit with my ossi-unification oncology surgeon, Dr. Rosanna Wustrack at UCSF. Tomorrow, I booked a marathon day of port access, port cleaning, blood tests through the port, an inch long needle implanted in the port for the imaging center across town, CT scans of chest and abdomen, and everyone’s personal favorite, an MRI of the brain.

As I chug the requisite 64 ounces of fluid, I feel rather sad.

Last week, I discovered that two of the most powerful women on the “Warriors” page have died. When I say warriors, I’m not referring to the San Francisco champion basketball team, but to a Facebook page that turned me on to the resilient and hearty souls who fight my rare cancer, the support they lend so freely, and lovingly. It’s a small page, just for people with Renal Cancer, of which there are several varieties, Renal Cell being mine.

It’s a page I see people come and go, a place where we share information, our feelings, ask questions and hope for a good outcome. The cancer I have has no known cure. We are Stage Four patients or family survivors. Some come and go quickly. There are a few of us who have weathered years of life with RCC. Everyone of that ilk hasn’t had an easy time, though. There are trials to compare, immunology treatments, side effects and some God-awful losses along the way. These people are brave. These people are my people. And every time there is a loss announced, I take it personally.

Cancer affects everyone’s life. It’s sphere is so much larger than the body. Somehow, we trudge on, and in the process, we find a new kind of happiness. It was in this spirit that I climbed Arthur’s Seat in Scotland a year-and-a-half ago. When someone who didn’t know my story said, “Oh easy-peasy,” I felt like a ramrod Puritan who couldn’t be kind. Why should I be kind? I think I embarrassed her on Facebook with my rigid reply, but she followed my ascent all the same. Forgiveness to the casual comment became the lesson.

I am blessed in so many ways. I was given only a few months to live. I’ve been dragged through hospitals, operating theaters, re-hab facilities, nursing homes, and finally to our little place in Kenwood, where it seemed I would live out my tired life in a hospital bed.

Although, that’s not what happened. I became a fire that just wouldn’t go out.

I have a lot of support. I have a wonderful husband who I enjoy matching wits with—and who works with me, as I come back from trauma, surgeries and treatments. I have continued to write, continued to publish, continued to live my life. I have a cracking good team that cares for me, here in SoCo and at UCSF in our beautiful, moody city. I can walk, having learned to four times. I can manage when left alone. I can drive! And I could take care of Peter when he had surgery last month. Not seamless, but care, nonetheless, care being that immeasurable love that defies limitations and gives one an unexpected breath and . . . dare I say it? Healing.

I also lost a few friends on the way. People who thought I should just “get over it,” or that I must be cured, or who got tired. Some who I considered lifelong friends. People who swore they would always be at my side. They bailed on me, but left me with a valuable lesson. Not everyone is capable, and not everyone is someone to confide in. These are human lessons. I don’t harbor angry feelings. I forgive you all. This is part of the deal when you are a long term Stage Four warrior.

But so many more have loved me, warts and all. I bear no guilt.

I went from being stone faced about my diagnosis, to crying at the drop of a hat, to being stone faced all over again. Some people wanted me to return to the person I was before—who moved mountains to help friends, who sent cheery cards when they were depressed. Who listened to their stories and saved mine for my writing. That is not exactly my way now.

I feel stronger now, and therapy helped. Yes, therapy—nothing to be ashamed of. Through my cancer center I found a therapist who is perfect for me, practicing something called “Narrative Therapy,” where I can tell my story once a week and feel utterly confident no one will abandon me for being sad, for needing to be alone, for having no big governor for my periodic anger, for not suffering fools. I also laugh behind that closed door. Life is funny.

So, I can tell you, I am still unafraid of death. No bravado, simply the way it is. I worry about those I will leave behind, but I cannot dwell there. I have written a trust, a will, letters to those I love (and I hope that they will not be read any time soon.) I want all to know that I have taken note of all that has been done for me, and my gratitude is great, perhaps greater than I can express. So many, especially Peter, have done so very much for me, from pots of chicken soup to arranging flowers to giving up hours they probably needed for themselves.

When my mother was dying, a Balinese nurse told us that in her culture, life is a book. “We write in it constantly, but no one knows how long it may be. When the last page is full, the book is full and it closes.” I think this is my philosophy. At least it gives me comfort.

And speaking of books--If you are in the Sacramento area and reading this, I hope you will consider attending the book launch for “Tough Enough,” poems from the Tough Old Broads written by Annie Mennebroker, Kathryn Hohlwein, Victoria Dalkey and me. We came together as the Tough Old Broads three years ago after long admiration and friendship. It is also a benefit for the American Cancer Society. 

Please join us April 28, 1-4 p.m. at Harlow’s downtown. It will be MC’ed by Traci Gourdine, and we will read our poems. Very specially, Annie’s daughter, Sue, will read some of her mother’s poems, and help us prove that poetry has a life beyond the ruin of hopes, awful news and misunderstandings. And that, in a way, death is also life. I told you, life is funny that way. It just won’t quit.

[peterandviola]

My Unlikely 5th Birthday

Some awful things have happened on this date in history. Of course, we all knew about the attack on the World Trade Center by commandeered passenger jets.  It was a herald of the driving enemy of global anxiety. It is fear itself.

Of course, other notable events happened. For me, a very personal event occurred that changed my life forever: The sudden and painful implosion of my left femur, following a biopsy at Santa Rosa Memorial Hospital. It was September 11, 2013.

What I can remember about my personal 9/11 is fuzzy, disconnected and colored by strangeness and trauma. I was pretty sure I was dying, especially when the morphine IV in the ambulance made no difference in the pain.

As we flew up Highway 12, I wondered what was wrong. Words like myeloma and bone cancer had been thrown around in the days preceding the biopsy. One surgeon thought all I needed was a routine hip replacement, which made me feel like I was exaggerating. One thing was known. There was a four inch lytic lesion (hole) in the bone. I was assured that was a really bad thing.

The first 24 hours of a trauma are decisive; I know that I threw up a lot, which is not unusual for such an event, especially when paired with morphine. I know I hallucinated, and I know I cussed like a bad parrot with every breath. Friends appeared and disappeared as I raved on. Peter, my husband, was almost as traumatized as I was. Marianna and Mike Terhune kept vigil, along with Georgeann  Muntin, all with calming intentions, but I could not be calmed.

I could not keep a roommate. They would change rooms with apologies. Finally, I was moved down a hallway where no nurses seem to come. I was agonized, confused and upset. After a while, the massive amounts of morphine collected in my blood, and I went into a stupor. A nurse with an eye for disaster took one look and called a Code Blue. Apparently, there was a charge of ER doctors and nurses who came to revive me, hustling with equipment and NorCon to drip into my IV. I suddenly opened my eyes and saw Peter. “Honey. Where have you been,” I murmured sweetly.

There are countless more instances in my catastrophic diagnosis, but I will spare you. Let’s just say there were many complications over a period of days when the trauma doc, Fred Bennett finally decided to operate against the will of the “hospitalist” who thought the pneumonia I had developed might kill me. Peter asked for his reasoning, and Bennett, ever the silent type, said simply, “If we don’t operate, she will die of pain.”

My feelings about this chaos and the kingdom of pain I had inhabited are still a bit confused, but perfect clarity is no longer important to me. I do know I could not accept the final verdict of Renal Cell Cancer. I truly believed I had been in a devastating car wreck. I would ask nurses and doctors if anyone had died in the wreck, or if any children had been injured. It was like Groundhog Day, over and over again. Finally, my oncologist, the ever-sweet and patient Ian Anderson explained it to me and told me he was my oncologist and would see me through this terrible thing.

That day, I went into the MRI tube to scan my brain. I was terrified of being so confined, so I was given more opioids.  An hour later, Dr. Anderson came in with a beautiful smile. “Finally,” he assured me, “we have some good news. Your brain is clean.” He held my hand while I digested that. Finally, I said, “Does that mean I’ll garden again?” He told me later that a thousand things went through his mind—RCC patients who died after a month, the potential therapies ahead that might kill or maim me, the onslaught of radiation, the imperative nephrectomy that would collect my 5 ½ lb. left kidney—but it just didn’t matter.  He leaned over and whispered in my year, “Yes.” 

At that very moment, “yes” became my personal password. No matter what medical insult was thrown at me, I would just say “yes”—yes, I would live, yes, I would write again, yes, I was still me.

The last five years haven’t been easy, but what a flair for understatement I have developed. Two titanium rods have failed, along with a steel plate.

And the loss of my kidney. So what? I’m here to celebrate my five years on the planet, after doctors gave me a few months at best. I’ve spent months in nursing homes and rehab hospitals, learning how to walk again, how to live a life, despite all sorts of unsuspected disturbances and distress. Many of you visited me and soothed me. Thank you all for that. Thank you to my faithful physical therapists, especially Debi, Terri, Rob and Julie. One foot in front of another, I learned. Follow instructions and do your exercises. All these people and things have brought me here to my current domain, where “help” is a good, kind word and nothing to eschew.

Easy, oh no, but good, yes and yes.  Am I my old self? Good grief no. I walk with a limp, I am woozy as I thump along and I have tiny tattoos that mark my radiation sites. But, I’ve fallen in love again with my precious Peter, my husband of two decades and change. Not only has he been my champion, but my  confidante, my caregiver, my handsome man with the heroic blue eyes.

The future blinks on the horizon. It could be hard, it could be good, it could be both. Am I afraid? No, I am not. Have I exceeded my expectations and goals? Oh yes. I find each day, despite the unlikeliness of me. I am here, and as Dr. Anderson once whispered in my ear, “yes.”

[peterandviola]

A Small Bucket of Joy

It began with an encouraging appointment with Dr. Shane Burch, my back surgeon. Sounds serious, but there were some tee-hee moments. UCSF is experimenting with appointments for Marin and Sonoma County patients who would ordinarily have to drive into the “deep city” of UCSF hospitals—in our case, one trip to the “mother ship” on Parnassus Avenue, another to Mission Bay. It’s where I have surgeries and, in Dr. Burch’s case, where I meet my specialist.

We were directed to meet Dr. Burch in a fancy dancy Mill Valley strip mall.  We raced to Marin County, past the Sonoma raceway, past the beautiful Frank Lloyd Wright-designed Marin Civic Center, past the Corte Madera lux shopping center, and on to Mill Valley. It was a sunny, cheerful day, and we were in a chatty mood. The miles flew by with minimal traffic. Once we found our address, we couldn’t help but notice the proximity to In-and-Out Burgers. My virtue began to sag.

We had to wait a while. It’s a strange place – in my opinion, it was redesigned by a drunken fashion designer with a failed career. There were swoopy, large black and white photos of very odd things: four bathing beauties being squirted by a uniformed nurse with a garden hose. She looked a little like Nurse Rachett. After seeing the size of the art, I thought the rooms must be palatial. But no, the rooms were teensy. I’ve seen larger pantries. We moved from room-to-room, seeking something that could include both of us, a doctor, a large computer screen for examining X-rays and the incessant visits of insecure staff members on their first day of attending Dr. Burch, who turns out to be an influential, world known doctor.

A strip mall is not how he envisions himself. Immediately, we could tell that Dr. Burch was really unhappy. We stacked ourselves in rooms that would barely fit Puccini.

He couldn’t read the X-rays. The chairs looked like they popped out of a sale bin from IKEA. I snagged the only comfortable one and made the men make do. Dr. Burch didn’t like the furniture. Dr. Burch didn’t like the newly hired staff. Dr. Burch was without his usual Layla, his beautiful P.A. or Katie, the elegant glue that holds his admirable office together. Instead, a yokel from Vallejo ran back and forth in the hallway, yelling, “I have an idea!!” 

Dr. Burch was about to have a little foot stamper.

Finally we settled down and the good news rolled in! The room was so small that he had to examine me as I bent over she-bang, holding on for mercy.” The operation was a success! I also found out that while I was unconscious during surgery, he discovered that I have incredibly dense bones. Before he could drive the big syringe up my spine, he had to select a large mallet and pound the damn thing in! He was lucky, and that went quickly, but he admitted his arm was sore the next day. You know, I always thought back surgery was a delicate thing, involving miniature tools and incredibly graceful hands. Mallets. I got mallets.

The wound is healing nicely, and is only two inches long. Two inches! The scar on my left leg is approximately three feet long, and has been reopened so many times, I asked for a zipper. Due to the banging on the back, I had what is known as surgical pain—more related to the surgery than the actual back problem. It should disappear soonish, and leave me in much better shape. Best of all, I don’t have to have the neck surgery until late October.

We zoomed from one parking lot to another, ending our safari with burgers and Diet Cokes. What a celebration!

A couple of days later, I had to return to Santa Rosa Memorial Hospital to deal with the freaky problem port—it is supposed to make my life easier, since my veins are very difficult to find and not very strong. The port is designed to take a short cut to a viable vein through a perpetual connection in the chest.

 Except it didn’t. While at UCSF, it failed, a painful and time consuming mess that let the anesthetic spread under the skin, painfully. It was stopped at once, and the doctors went back to vein diving. Lucky for me, I was given some kind of little cocktail of oxygen and something they said would make me purr like a little kitty. Which I did for the duration, some times more loudly than others. I loved the little kitty feeling and awoke in the best mood.

Today, I hurried up Highway 12 with Peter for yet another operating room, this time at Santa Rosa Memorial. I had done some homework, and interviewed the new Doctor I wanted to do the procedure. The first one was marked off the list permanently in crude black marker.

By now, I know the drill. I arrive precisely on time, hungry and dying for coffee, in loose clothing and simple shoes.  There I met some charming nurses. One is from Ontario on a traveling assignment. They were all competent and amiable. What a switch from the weird little office in Mill Valley. They moved gracefully around me in a circle, clicking their tongues and smiling when I kissed Peter’s hand as he left for the waiting room.

Everything moved smoothly and quickly. Within 30 minutes, I was told that my port was inserted slightly off-target, but can be used. I just have to remember to tell subsequent surgeons it is tilted. Yes, tilted, like a pin ball machine. It was found, tested with dyes and pronounced usable.

I came home and fell into bed, still slurping a nice big coffee my love brought to me. Just up about an hour, I wanted everyone to know that Team V (as my friend, Mikey calls it) is still working just fine. Your loving thoughts, so filled with the beauty of kindness, reached me just when I needed it. I have been dreading this week, worried and nervous. Your support and virtual giggles made me brave, and helped me find my sense of humor again.

Thank you. Thank you. Kiss. Kiss. Hug. Hug. Life is good, and your good will has floated me high above the bumps again. I hope I can give such joy and relief to each of you one of these days. It is richness worth the price of admission. It is life at its very best. All I can say is, “yes!” Yes!! YES!!!

[peterandviola]

The News: Mostly Good

I’m in a funny mood at the moment. Certainly not funny-haha. Funny strange.

For the record, I survived back surgery, and it looks like the ultimate outcome will be success--but, I am taking inventory. You know, “Let me count the ways,” and giving thanks for this, and all I have in this world.

We live in a comfortable home, not fancy, but welcoming. It sits on a parcel that is magical and productive, more or less rural, though much more fashionable than it was when my parents bought it. It is a bit of work, but manageable. Not a showcase, but a comforting place.

We weathered the horrible firestorm of last fall. Some of our neighbors lost everything and are either trying to rebuild or are selling out, if they just can’t take the aftermath. I am grateful that our losses were low, even if terrifyingly close.

I can walk with a cane or a walker. I was able to step off a curb and into our little car following my surgery (my eighth in four years) last week. On the way home, I felt every bump on the road, but I felt it. No paralysis or numbness. There was a huge traffic jam on the way home, but a truck driver idling next to our car rolled down his window and let us get into the turn lane towards home. He gave me a smile, too, much treasured.

As we bumped and thumped over the potholes, I was transfixed by the beauty out the window. There were big, rolling fields of grape vines, some pastures with cows and my favorite, a field of Clydesdale horses, the one with plumpish hocks and wide necks. The ones who know everyone loves them. 

I began my litany again. Basically, as my late friend, Angus Mackenzie told me when he fought cancer: “That’s the thing about pain, if you don’t have it, you actually aren’t alive.” 

I’m not paralyzed, I’m not numb. I am headed home. I have a home. The heat is unavoidable, but reassuring in a funny way.  And yes, we are blessed. We chose this little place my father used to call Hummingbird Hotel.

The surgery had a few complications, but I’ve managed. I feel closer to Peter than can be imagined. I am able to get up, walk around the house, and manage my pain. I sometimes feel rotten, but I am trying to be kind and thankful. I even did a small number of dishes the night we came home. These things are hard on spouses—the feeling of necessary support and assistance can be overwhelming. I know, because I’ve done it, too. But, for the most part, it is quiet here, nurturing and, yes, happy. Such things can be evasive when you are this sick. I am listening to Piazzola and feeling lucky.

We had a wonderful afternoon in the  midst of all this soul searching and healing, when Christian de la O and Cynthia Linville stopped in Sebastopol and lunched with us at Lowell’s. We laughed and talked and shared life for a couple of welcomed hours. I felt good, just sitting aside my friends without much ado. The way life should be. My next goal is to attend Cynthia’s reading with Katy Brown in Davis if all goes well. In the meantime, I look to the garden; it grows for me.

And yes, more is ahead. Next Wednesday, I will have a procedure to see why my port failed in the operating room at UCSF, and get a repair or a replacement. I worry, of course. Think good thoughts about big, lush veins that run like inexhaustible rivers! Then, a couple of days later, the stitches come out of the back, hopefully, here in Sonoma County. Perhaps the heat wave will subside by then, my spirits will be higher and the smoky skies will be bright blue again. I will leave you again with my thanks, for without you, nothing is possible. Here is a short poem I wrote recently that says it all. Life is why we are here.

Bells

Perhaps you listen to a gentle bell

That whispers, unbroken

Softly rising, a bell of

Quietude and near silence

A bell ringing like a rope

On a mast in a soft salt breeze

A story of itself

A story of you and none other

Are you the bell that rings

Or the bell that rings for you?

A song of a right life

The bell of satisfaction

The joyous contentment

Of a bell well rung

© 2018 Viola Weinberg

[peterandviola]

Finally, Maybe

For almost a year, I have known I had a broken vertebra. The little bugger is at T7, which is especially uncomfortable for women. It is known as the dread “bra line,” where the damned spandex and hooks creation (of Howard Hughes) with the French name resides--the armature of female undergarments.

I so hate the garment known as a “brassiere” that I once participated in a bra burning. Yes, it was a publicity stunt for my second collection of poetry, called “Scrambled Clams and Bananas.” Maybe you came to it. Reporters eagerly attended, shot funny images and interviewed me with questions like--”Why the bra? Why not underpants?” To which I replied by tearing mine off and adding to the blaze. In other words, I’ve hated underwear for most of my adult life. And it was the early 70s, an ill-defined aftermath of the Summer of Love.

But, whoops, I was talking about my icky little vertebra.

 To quickly summarize the tiny story of my T7 vertebra, let me remind you of the Gamma Ray knife I was treated with over a year ago. It is a tiny and well focused ray of radiation that treated an area about the size of a postage stamp. Three quick zaps that took a couple of minutes each. Though the radiation did not break the vertebra, apparently, it may have made it quite brittle. Eventually, there was a fissure, that became a break. 

Happy and ignorant, I went off to Scotland to pursue my dream of an assault on Arthur’s Seat, 30 years after my first climb there. My 70th birthday felt good, no real pain, just the lust for the top of Edinburgh’s beautiful, and quite extinct, volcano. 

 As this beautiful image of the spine by Sharon Auberle can tell anyone who looks at it, the backbone is a series of sturdy little stations of strength, each  beautiful in their own right. Also as delicate as they are robustly engineered. 

By the time I returned home from Bonny Scotland, the broken vertabra had compressed, pressing on my spinal nerve.

It took me a while to find the right surgeon. And when I did, he made it very clear that a simple procedure could make this sorry situation better in short order. A Kyphoplasty was ordered and reordered twice. Like a lot of us, I had the damnable respiratory flu at the turn of the year. I got better, but the seemingly intractable cough--wet, gurgling and off-putting, continued. 

I went to a Pulmonologist, who put me on inhalants. I went to an ENT, and had an ear tube installed for drainage. All the while, I kept thinking of the old adage that seems to follow cancer patients around: that the cure just might kill ya.

While stewing in this fine kettle of fish, I also discovered that I need to have a neck fusion a few weeks after the Kyphoplasty. The fusion is more serious, but also more important for a decent life. So, I am doing all that the doctor told me to do. I am not snapping my neck around, but slowly turning it. I am not reaching above my shoulders. I am careful, and quietly grouchy.

I remind myself I am one of the lucky ones. For one thing, I am alive long after my guessed expiration date of long ago. I have good insurance and great doctors. I am married to a wonderful man who puts up with my moods, and friends who would do most anything for me. And, as my beloved cousin Genny Yates tells me, I have the genetic disposition of a marvelously stubborn donkey.

Here’s where the saga goes from here. Tomorrow morning at 6:30, I have a port installed at Santa Rosa Memorial Hospital. I have wanted one for a long time, for I have run out of veins for IVs. The port will make things much easier, especially for the Kyphoplasty now scheduled for this very Thursday at UCSF with Dr. Shane Burch. Yes, the one who looks a lot like Daniel Craig.

Please think good thoughts for me. Once again, I call on you for the power of love to see me through. I know. It’s been going on a long time, but that’s good, yes? Please say yes. I’m counting on you.

[peterandviola]

“Scanxiety” and worry warts

As this Diane Arbus photo can tell you, I’ve been anxious.

The past few weeks have been slow as I awaited the green light for a couple of surgeries that will affect my back and neck. Chronic bronchitis put the brakes on any procedure that involves general anesthetic. I am not good with “being put under.” My mother had a surgery later in life that involved a general for an intestinal blockage and a foot-long resection. She survived, but was never the same. Since she was always “colorful”, some folks didn’t see it, but as her caregiving daughter, I did. Fortunately, the resulting dementia resolved into something called “pleasant dementia.” Still, she wasn’t herself ever again.

Twice after surgeries related to my catastrophic onset of Stage Four cancer, I couldn’t recognize Peter for a time. Once, I thought (emphatically) that it was 1776. Another time, I thought we were awaiting imminent nuclear attack, as my sweet husband quietly held my hand and awaited my complete awakening.

Plus, I am one of those thrower-uppers, who can’t keep food down for a few days after.

When the wonderful Dr. Rosie Wustrack implanted a rare and unusual artificial femur, she really listened. I had a spinal and had no problems and less pain than previous surgeries. It is unknown whether this procedure can be used in the spinal operations that lie ahead.

But, as always, there are other things in the mix. Family problems of miserable proportion with frightening implications have made things worse, much worse. And not everyone has been understanding or compassionate. Despite the unequaled love of my wonderful mate, Peter, this situation left me hollow and doubting. But, two wonderful friends threw a lifeline to me this week, which changed most everything. Thank you. Thank you. Thank you.

To be honest, I’ve developed an anxiety problem. Most recently, a “Scanxiety” problem, related to my regular scans. Viable blood veins (for the I.V. that shoots radioisotopes into my system) are collapsing and becoming rare. I had to endure three injections in a week. The last one was a disaster and left my right hand looking like a blue boxer’s glove.

The upshot is that, after all that, I do have good news about my recent round of scans. And yes, a little uncertain news, too. First, the really good news: my brain MRI is clean and perfect. No problems. Whew! Since I have dementia in my family, I fear this deeply. I have had the time to consider what this means. A clean report means I can fold up that particular concern and put it away for now. I remind myself, there was a time that I was dying, and there was no other perspective. I live for reasons unknown, and the extreme kindness of others. Thank you.Thank you. Thank you.

My bone scan provided a little more food for thought. It detected the messy place in my back where a brittle spine (possibly from radiation therapy) left a broken and compressed vertebra I have lived with for about a year. Yes, it is painful and affects my balance. Yes, I would like it remedied. Like so much else about my rehab, it can be fixed, but at a cost. I will never be quite the same. Just look at me walk. I have a short leg, and I have a dowager’s hump on my back. Well, hell. I am alive and can do many things once thought impossible. This counts for something big.

At some point, I will stand, sit and walk without back pain. The neck will take more time and physical therapy, but I bet it will be as spectacular as the reclamation of my left leg.

The news from the pelvis is a bit more uncertain. The lytic lesion detected earlier this year is still there, and measured as enlarged. This could mean a number of things. It could mean the cancer is on the march. Or not. It could simply be the result of the gamma ray knife, and the “burning” of a margin around the lesion that I have never felt, nor imagined. It is a wait-and-see situation. 

I keep thinking about the portal that my granddaughter passes through on a weekly basis at the horse arena near Petaluma. The motto that is embossed says it all, “Some days you win, some days you learn.”

What have I learned in the past few days? I have friends who are willing to give me things I doubt that I deserve. I am surrounded by deep love.  I have the ability to write, to express myself honestly. I can pursue unlikely goals like a dog until I reach them. I can learn to roll with the bitter ones, the ones who disappoint me gravely. And most importantly, I have Peter, the love of my life, who loves me no matter what may come. 

This photo by our friend Elvira Ford, says it all.

In September, ironically on my birthday in 2013, I was diagnosed with a spectacular onset of Stage Four Kidney Cell Cancer. I was given no hope for survival beyond a few months. This year, it will be five years, multiple and hideous operations, including the loss of a kidney, the loss of my natural thigh bone, the loss of amputated muscles in said thigh, and the absolute importance of accepting help. The news from here may always be mixed, as real life is always in progress. All I know for sure is that your love and support has meant everything to me. And yes, it’s true. Love is all there is.

[peterandviola]

Not So Quick

Yesterday, I had a piece of news that was truly disturbing. As you may remember, I was scheduled for a surgical procedure tomorrow, March 28 at UCSF. This situation was a slowly evolving thing. Took maybe a year. A year!

In the meantime, I did a lot of physical therapy, but I also tried to carry on a fairly “normal” life. There are quotes around normal, because not much has been normal for a long time, almost five years. Meanwhile, I feel more decrepit by the minute.

Finally, I was cleared of cancer in my spine, began to ready myself for my Spine Kyphoplasty, a nifty little procedure that involves a big, fat syringe that loads a little balloon inserted in between vertebrae with a cement like substance. The idea is to lift the compressed disc off the rather major nerve and return one to a more agile life with less pain. Sounded good to me!

Unfortunately, general anesthetic is involved, although it only takes an hour. And, like many of you, I’ve had the awful flu this year (since January), which developed a nasty little secondary Bronchial infection. In other words, I’ve been hacking violently since late January like a fiend. My wonderful G.P. Dr. Eran Matalon, gave me two courses of antibiotics. The next step is Prednisone, an awful drug that I don’t take gladly nor eagerly due to the side effects I suffer.

So, the moral of the story is that maybe I shouldn’t have been so ready to turn away Prednisone. The infection has burned on, despite my stubborn insistence that it’s just a cough.

My surgery is cancelled. I will have to wait until two weeks past my last cough, presuming that this ever gets resolved. I am trying to remain calm and confident, but after several years of medical spectacles and interventions, I am disgusted. Please continue to send your positive thoughts my way. I haven’t lost my courage, but my patience is frayed. And I haven’t forgotten that mine is a long road; I’m just grinding my teeth over the bumps and potholes. Meanwhile, onward, as my friend Kathleen Lynch says. It’s the only way to go, potholes and all.

[peterandviola]

The Upshot

Yesterday, the sky was violent. Rain fell like steel, relentless and cold. We spent the day indoors, except for brief interludes trying to get indoors or to the car. We rose early, too early. I didn’t want to miss my MRI appointment, which was hard won and inviolate.

There is a new MRI machine at UCSF Mission Bay. Rather than the usual donut shaped tube that tends to excite fear and phobia in so many people, it is shaped like an egg on its side. I felt no concern as the techs slide me into it. One, a sweet fellow who likes to tell jokes, noted that I was recovering from a Bronchial infection. He laughed, “I’ll give you a dollar if you manage to get through this without coughing.” And, of course, I instantly laughed and coughed.

Luckily, the rest of my time in the tube was calm and, yes, almost a rest.

Some of you have wondered why I am having yet another MRI. It has to do with something I have not wanted to talk about until now. My ever-thorough surgeon ordered it because there is more than a collapsed vertebra at T-7 in my spine; serious problems have arisen in my neck, as well. I have had years of spurs so long, they look like horse manes. I never gave it much thought. It is the evidence of two kinds of arthritis, Rheumatoid and Osteo. Both of my parents had RA; I expected it would be mine one day.

Diagnosed for years, I have fumbled along with it, trying and rejecting toxic drugs and treatments that didn’t work until my rheumatologist finally shook his head and sighed, “Well, if you threw the meds away, at least you did it in Paris.” It was great that I did! I resumed our Parisian visit by eating my way across the city of light and doting on our dear, dear friend Eddie. I went from Paris to a new medication that has stayed stable and helped a great deal. While I have been X-rayed and examined regularly, RA is like rust; it never sleeps.

Throughout the awful rehab from cancer and six operations, I have tried to ignore RA. The flares, the fumble hands, the numbness and so on, all reviled and unheeded, until now. Odd as it seems, this is good news. All the tests have confirmed that the issues in my spine and neck are NOT due to cancer spreading. Thanks be!

But, it is of importance that I address them, and soon. The first and least invasive surgery is now scheduled for March 28, coming right up. I have lightly referred to this as a cement injection, but it is more complex and perhaps more successful than that phrase implies. Let’s just say, the surgery will take a mere hour, and I will have Dr. Burch as my surgeon. Through an injection in the spine, he will insert a balloon via (a huge) syringe, which will be filled with a cement-like substance that will lift the wrecked vertebra off the spinal nerve. It’s an effective and mostly immediate relief! While his brand of Kyphoplasty requires incision and GPS like markers, the recovery is almost absurdly quick. I might go home that very day! Within a week, I should be fine. Wow!

Now, for the rest of the story. Vertebrae C-4,5,6 and 7 are also in need of immediate surgical intervention. Without it, there could be dire results, more serious than the collapse of T-7, which I will have fixed first. Best news of all is that Dr. Burch, despite his meticulous examinations, finds not a drop of cancer. This has humbled and thrilled me at the same time. I find that I have developed an unhelpful attitude about pain since the onset of my cancer. I like to ignore it and play it down to the sweet inquires of friends and the vital questions of doctors. “Oh, I’m fine,” is not a good thing. I vow from this day forward to never demure when asked. It is not helpful in any way.

The truth? I have chewed leather and bitten my tongue too often. I am in considerable pain a good deal of the time, sometimes actually causing me to be angry, forlorn, distracted or wishful. There! I said it! My great relief has been in extensive Physical Therapy, but it does not keep the pain at bay for long. There were times when I scaled Arthur’s Seat (and I did have active cancer, then undetected in my pelvis) when I practically doubled up from pain. I think the gamma ray therapy has helped the cancer, but the bone pain lingers, viciously.

The good news is that this is a treatable situation. I focus on that and must. The second surgery will involve fusing those unhappy cervical vertebrae. But, it is not the barbaric resection surgery that the first surgeon told me I must have, or put my affairs in order. Once again, I strongly suggest that if you find yourself in my position, get a second opinion.

So here you go. I am ready now, with vital information, straightforward diagnosis, and the assurance of my overall well-being. I feel as if my loved ones have all sprayed Cancer-Be-Gone all over my tired self. You have no idea how much I needed it! Or maybe you do. I have tried to be brave, if dumb about the situation, but I am brave enough now to be honest. I am walking, driving and even playing with little Puccini for short periods of time. I can fix a sandwich, wash a dish, and even cheer the Warriors on with glee, as long as I don’t try one of those cheerleader flips! But soon, it will be much better, and I will be able to travel, spend more time in chilly climes and be hugged with a heartiness that would leave me weeping without the repair. Bless you, each and every one, for all you have given to me—and to Peter—during this time. It has honestly helped us survive. Next up, thriving, thanks to you all.

[peterandviola]

Under the Limbo Stick

I am still in limbo. An impatient person all my life, it is a hardship I am trying to tame. Frankly, it’s why I quit teaching. Impatience breeds anger--freelance anger attached to no particular thing. It’s hard on everyone around me, especially my beloved husband. Today, my hero is off to a photo conference at Fort Mason in San Francisco, which pleases me. He deserves it! I am happy to feel the space of alone time, when thinking is limited to which book I choose to read, or which movie I want to view. 

Dressed like a ragamuffin, I am happy to be warm, patient with the cold temperatures that seem to enter my implant and make my thigh twang like an old, out-of-tune guitar. I remind myself each time I experience this pain that I’m the lucky one, the one who has a miracle--a miracle called life. Even the most stubborn medical help I’ve had all agree: my survival thus far is a gift.

I gritted my teeth last night when having yet another CT scan. 7 p.m. on a Friday night seems like an unlikely time for such a procedure, but my surgeon, the ever sharp Dr. Burch, really wants to make sure there is no cancer lurking in my spine or neck. The vertebra in contention is at T-7, the bra line, a most uncomfortable spot. Dr. Burch reminds me these extra scans are of utmost importance in managing my miracle. We are hoping for a Skype-like meeting on Tuesday about the eventual outcome, but I have learned these things always happen with glacial speed. Breathe! Breathe!

I breathe in. I breathe out, a privilege of life. In the CT “can” I try to remember those green, green hills of Scotland I where I wobbled and conquered. I remember the beautiful smell of fresh heather. I think of my friends’ faces when I reached the top of Arthur’s Seat, or my own incredulity when I was able to go up multiple flights of stairs in the Orkneys. Or when I was able to dip into the most ancient site I think I’ve ever seen, my Skara Brae. These are great gifts of life I’ve had--the ability and the belief that I can do it is bolstered by the love and belief by which I am surrounded.

Even my Physical Therapy office has a picture of me atop Arthur’s Seat. When someone whines that they don’t want to do the exercises, they point to me. I have a responsibility to keep moving against the gravity of inactivity.

Meanwhile, I have other gifts that seem wonderful and lavish to me. Ella, our London grand daughter has won a writing contest in England. Imagine! 27,000 others entered. We received this wonderful news with glee. And life’s challenges suddenly felt less challenging.

Yesterday, our young friend, Addie, came by with Rupert, Puccini’s long-haired ginger bestie. Puccini pepped up and they ran through the house in never-ending circles. Rupee is a yodeling hound, which Puccini seemed to find amusing. This cheered us all immensely. Puccini is starting to show his age -- we think he’s 11 or so -- so it inspires when I see him perk up and grin, as only he can.

Today is a resting day, without impatience or anger. It is a settling day I can well afford. The love of friends and my precious family is so important.

Live each day as if there is another is my mantra.

[peterandviola]

Gamma Gamma Go

Life is always surprising. Last summer, just before I sailed off to Scotland with my bonnie lad, we learned that somethings were amiss. After being NED for a long while, years, I had suddenly shown a malignancy on the move. We thought the spine, around T-7, the bra line, because it hurt like a son-of-a-gun and finally, X-rays had shown a fracture. I had a round of cyber knife treatment. Quick, 1--2-3. My doctors thought it would take up to six months to fully die out. I was patient.

And, I was thoroughly excited by our return to England to see family, followed by my successful attempt to get up Arthur’s Seat in my beloved Edinburgh, Scotland. Away we went, WHOOSH!

On the trip, we saw all sort of things--and Peter fell for Scotland just as I had thirty years before. This was not unexpected. He took me at my word. Scotland is a big, fat, beauty of a place, wild and green as green can be. We rolled in the heather, we trudged through windy places with Puffins, we sighed and moaned and happily ate our way through a country of kullen  skink and tatties and tea. And whiskey. 

On one leg of the trip, we met a couple of odd fellows on a train. They didn’t know each other. One was a construction chief for a big crew above Inverness. He carried a duffel complete with a bottle of Single Malt Scotch. We took sips, while the other fellow, a gay Swiss adventurer clutched his hanky and shook his head. We were in the moment, we were in Scotland.

Coming back toward England, I started feeling a bit rotten. When I got home, our diagnostic trip to Dr. Anderson’s office was put aside in favor of survival from one of the worst fires in California history. The Tubbs fire--and a number of others--swept through the Valley of the Moon and much of Sonoma County. Everything was in a state of flux. We spent 11 days in a sleazy motel. We were grateful, escaping to an intact house with our little dog. 

Finally, we were able to see the oncologist, who told us the suspicious spots on my right lung were just that--spots. The biggest one had just disappeared! But, there was a troublesome lesion in the left pelvis. Gamma ray time.

Fearing the worst, Peter retired. It took ages to get to UCSF to see our magical and brilliant ossi-unification oncologist/surgeon, Dr. Rosanna Wustrack. When we did, it was time to get under radiation, to pursue some kind of treatment with the grisly backbone issue, and start living again.

Just today, I finished the course of gamma ray treatment. I was babied into a very uncomfortable blue form on the treatment table, which felt very bad for a short time. It was supposedly customized to my back, it was so uncomfortable.

My nuclear technicians, Lina and Xiou (pronounced Swan, meaning Spring in Chinese) rolled me around like a rag doll as they tattooed me, marked up my body with tape and Sharpie pens, and played heavy metal music in the background. While they outfitted me, I glanced at the other forms and face masks that littered the room, some going to incineration from patients who are no longer, “active.” I think that means dead. Shiver.

These rounds of treatment seemed much more substantial than the last bunch. I was warned my site might hurt, and it does. I have had a cold for about a week, and that hasn’t helped matters any. As my Dad used to say, I felt like a frying pan of poop, burned on one side, raw on the other. I counted my blessings, thought of my friends who have given so much to me. God, I love you, every one.

All good things come to an end, and today was the last of the treatments. I talked Peter into stopping at a little Chinese restaurant on the way home, where we had noodles and shrimp. The skies blackened, and rain began to fall in a beautiful dark way. By the time we were tucked back into our little place in Kenwood, I was really asleep. I snuggled down and felt fragile, but very happy to be home. There in my sight, was the world’s most wonderful dog, my little Puccini, grinning at me. There was no music, no TV, no long strands of thought ranging from sleep to death. Just breathing. And that was enough.

[peterandviola]

Simple Relief & Happiness

I am back at home, luxuriously wrapped in my old blue robe. It is warm here, and I am happy.

Yesterday, there was good news. Here’s what I learned: the spinal problem is probably not cancer. T-7 cracked and collapsed from years of degenerative disease, probably one of the two arthritis diseases I carry, nasty genetic problems that are nobody’s fault, although the break occurred after my Cyber-Knife therapy last February.

I have learned with cancer therapies that improvement is one thing, but being yourself again is another. After all I’ve been through, I have accepted this and adapted as well as I can. I am doing very well, all things considered. My young radiologist at UCSF, the dimpled Dr. Bronstein, helped us understand as we picked our way though the thicket of my situation.

He believes that I could use the cement injection and that the “cage” surgery is a bit of overkill. I may need it in the future, (future!) but not now. I will discuss this further with my revered ossi-unification specialist, Dr. Rosanna Wustrack, who I will see on January 18.

Now, on to the lesion on my left pelvis. No doubt that it is cancer, but no doubt that it can be treated via Cyber-Knife. It is the size of a nickel.

I asked if the treatment could crack my pelvis, as the vertebra was cracked, and it seems quite unlikely. I have a large and very sturdy pelvic bone. Finally, a benefit of my “Venus of Dusseldorf” figure. Fertility, itself, my pelvis managed two natural childbirths of large-headed girls, and now, it is strong enough to withstand a therapeutic drilling with the Cyber-Knife. 

I had a CAT scan, tattoos were applied for directional guides to assist the operators of the Cyber-Knife, and a reunion with the very smart and nice people who run the good ship Saint Cyber.

And, finally, I was sent home. Home Sweet Home. Thank you, everyone, for sending the energy I desperately needed to get through this diagnostic maze. I don’t believe I could have said this honestly without your endless support.

[peterandviola]

Still Your Girl

After a long period of insurance chaos, my situation is beginning to get sorted out with a few steps forward. First, let me tell you all, I’ve managed to let my rage at the American health care system be as useful as it can be. My poor husband had to witness my anger related to my own care as well as anger towards the treatment of children and the very old. I’m not digressing. I am here today to let my blog followers and friends of all sorts know what is up with my cancer.

Stage Four Kidney Cell Cancer is here, and it’s not going away by itself. On Monday, January 8, I will have my first consultation with the UCSF radiation department’s Dr. Bronstein, about whether the potential cyber knife treatment is right for the lytic lesion on my left pelvis. While it is very specific and quite targeted, it’s not right for every cancer. Dr. Bronstein, an angelic looking youngster, was the doctor who over saw my last treatment. It seemed to have worked, but it can be hard to say, definitively.

Sometimes, I dialogue with my cancer. “You just had to show up, just when I thought things were going well, didn’t you?” On good days, it’s more like, “I’m a Tough Old Broad. You can’t break me.” But talking didn’t seem to make me feel better after friends started dropping like blossoms in autumn from cancer. Often, they seemed to be in better health than I was. At times, I envied them for their ability to walk without a horrible limp. What a lesson that is.

I do not back away from friends with cancer as so many do. I let my friend, Bill, weeks away from death himself, hang his head on my shoulder and rub my face with his hands. I didn’t cry; I didn’t have to. If he gathered strength from touching me and loving me, then I felt good. I gathered strength from it too, even though I felt the abject sadness of his family and friends. I let his feelings wash over me, like a kind ocean. Oddly, I realized this made me believe in my own feelings, too.

Meanwhile, the insurance confusion persisted.

I found that my husband, who has understandable knowledge of insurance games and the befuddlement it brings to us ordinary medical citizens, is a genius. He also has a temperament made for tough calls and big showdowns. Somehow, we waddled out of the swamp and now, I am beginning to see the light of day.

Still unsettled is what will happen to my spine, where a fractured T-7 has languished for a year. Yes, it is painful, and often sets me on edge. No, I don’t think I will have the complex operation a surgeon suggested last September. I am hoping for a cement injection into the broken vertabra, to stabilize the fracture and lift it off the nerve it impinges. If this is the way it is treated, I might be home in a day or so, able to be up and around in no time at all, if it works.

Our plans for retirement are on hold, but we have sworn to see old friends and tick things off our list in this New Year. I love my friends and take good care of them when I can. It’s not always easy. The transitory nature of life on this planet (and at my age in my kind of health) sometimes makes this absolutely impossible. I hope things will go well, and I can have these reunions. People are of greater importance to me than possessions.

This rambling blog post has a lot to do with the very center of me. I don’t know if I can defy cancer for many years, but I will try. Standing up to such a phantom is very confusing, to say the least. It is always with me, no matter how many affirmations, how many moments when I realize how very alive I feel. I know no one has yet escaped Stage Four Kidney Cell Cancer, but my refusal to go quietly encourages me to be stronger yet.

It’s a wild ride. But I’m your girl. I’m up in the saddle, racing over obstacles and towards confusing horizons. Up, over that unexpected obstacle! Quick, around that pit of vipers! And still, my friends, I am not afraid. Thank you, thank you. If not for your love and care, I might not be so brave.

[peterandviola]

I am no longer NED.

This one, simple sentence has more meaning for me than one can imagine. No Evidence of Disease was a wonderful designation, a beautiful thing. It meant all those operations, six in total, worked. NED made the radio therapy that burned and blistered a good part of my lower body was just something I had to do to get to NED. Two broken titanium rods, a twisted metal plate, and finally, having most of my femur removed and replaced with an artificial thigh bone were just incremental. It meant that learning to walk for the fourth time was worth it.The braces, the bandages, the weariness.  It meant that hundreds of hours of re-hab, of staggering in walkers, walking poles and canes were fine, just bumpy roads  to wellness.

A recent flurry of scans and tests has revealed a new lytic lesion, this one in my pelvis. Some cancers built tumors, lumpy and various in sizes. Mine have eaten holes in bone structures as it has tried to consume me.

 Being NED all this time gave me a false sense of security. It made me feel invincible and ready for anything. With my forever friends, the Tough Old Broads of Poetry (Annie Menebroker, Kathryn Hohlwein and Victoria Dalkey) I experienced a wonderful event that left us all satisfied and flabbergast at Verge Gallery with hundreds in the audience.

Three more books were published while I was NED, I became a Glenna Luschei fellow and was nominated for Pushcart Awards and Best of the Web Awards. My poems were used to create a public work of art by sculptor Troy Corliss.

There were many delightful experiences with my beloved husband. We traveled to Hawaii and New Mexico between operations and rehab. I began to cook again. I’m not very good at it, (and often admitted I had only ten recipes—and one of them being coffee) but I loved having a warm dinner ready for my hard working husband when he returned home after a total commute of five hours on a bus and a bumpy transit in a Prius on back roads. It seems so unfair that his retirement was the day before I got the news from my oncologist 

I saw my English family again, and was delighted to see that it had multiplied with joy. I met new in-laws, who traveled to Scotland for a warm acquaintance that foreshadows more joy.

I learned to hike again, using an all-terrain walker. We went to Yosemite, my first visit to the absolutely wondrous and thundering beauty.

I conquered Arthur’s Seat in Edinburgh on my 70th birthday, with the loving help of Scottish friends I have long adored and Peter who promised at our wedding to encourage my magical thinking and sudden urges to rush off to other countries.

I navigated stone circles in the Orkneys. I went to Skara Brae. I tramped on Skye. I fell asleep in Portree to the sounds of a pipe band a few streets away. We drove to Loch Fyne and found “Rest and Be Thankful”--the title of my coming collection.

Once home, we had to fight our way out of the biggest wildfire in California’s known history. We survived,  and so did little Puccini.

All this from that little acronym, NED, No Evidence of Disease.

It is still early in my diagnosis. I don’t have a lot of details or a plan. There may – or may not—be more surgeries, treatments and downtime. Or maybe more cyberknife surgery. My wonderful oncologist, Dr. Ian Anderson, tells me I have escaped many of the evils and burdens of Kidney Cell Cancer. That got my attention, because what he was really saying, is that I am alive, ambulatory and self-sufficient in many ways. No, we don’t know what is ahead. No, it’s not time to give up and flail. This is simply how I feel at this moment. I always have hope, and I am not afraid. It’s just one more damned thing. Send me your loving support again, if you can. I know it’s kept me vital and ambitious and full of joy for a long time. It will be gladly received. Thanks. Thanks. More Thanks.

[peterandviola]

The end is nothing; the road is all.   Willa Cather

Throughout my medical ordeal, I have said over and over that I am not afraid. Sometimes, I say it for the benefit of my family, especially my youngest grands and the great grand. Sometimes I say it to fortify my husband, Peter, who is such a strong person, one might think he needs no such thing. Really, I also think I say it for myself.

From the beginning, a time I can’t quite remember, I’ve tried to be calm about calamitous and horrifying predictions, developments that could scare the pants off most anyone. “I am not afraid,” seems to bolster strength and reassure a lot of people. But, as outside events, public violence, personal setbacks and outrageous news of all sorts have happened, I find myself withering and withdrawing, overly sensitive.

The events of this week in Las Vegas have shaken me. I hear echoes of it in most everyone’s voice. “Who? What? Why?” resound as loud as the fake news and nasty bots that have pretty much ruined the joys of social media for me. There is no apparent answer to these questions and certainly no solution while we as a people remain hideously divided.

Coming out of my self-imposed cocoon long enough to test the winds of reality hasn’t been easy for me. Our time in England and Scotland was wonderful. I felt myself again, felt that happy, hardy woman deep inside who I’ve always been. It made it easy to defy dire words and hateful news. I felt my spirit bound between experiences, new and old. I marveled at how things can be so new in such an old land. Maybe it was just the realization that these new feelings have always been with me, but somewhat buried from necessity. I enjoyed everyone I visited and strangers I met that are no longer strangers. What an incredible luxury.

This morning, I feel the gut grabbing sense of the chaos everyone seems to be feeling. And there’s something else. I’ve lost my NED status (no evidence of disease.) Last week, I met a new doctor, who I thought was consulting with me over a broken vertebra at T7, along the bra line. I’ve known about the break for a long while, almost a year. My doctors called it to my attention some time ago, and it was considered by them all. One barely saw it on an MRI. I didn’t think it would be too serious, especially because one doctor thought it might just be a stress fracture that could grow back together.

The new doctor consulted with me all right. I must admit, it was the first time fear blossomed in the way I see it in others. Before I agreed to a consult, I discussed it with my beloved oncologist, Ian Anderson and the ossi-unification oncologist/surgeon, Rosie Wustrack. I was assured that it was a good idea. Probably, it should be fixed after all this time. One strong contender for repair was the cementing of the fracture, a procedure that would probably keep me in the hospital a maximum of overnight—and would not require a general anesthetic.

And so I headed off for our great adventure, giddy and happy with possibility. Before I left, I had an MRI and made the requisite appointments. I never really gave it much thought, although I had days that were painful. I chalked it off to all the activity of the trip. As I drew closer to my crazy goal of triumph over Arthur’s Seat via all-terrain walker, I felt the pain changing in me. These difficulties were mitigated by my rediscovered abilities to climb stairs, sit on low toilets and get out in snappy winds to touch ancient stones and see antiquity in Neolithic evidence of life on earth.

As you all may know, I did it!

I climbed Arthur’s Seat with good friends I am so blessed to have in Scotland. 

Peter was my full partner in everything, no matter how nutty it seemed. We did things he longed to do, too. It made me realize that, after 25 years of being close, a quiet kind of love has developed between us. I understood that, yes, it was evidence of enduring belief. Happiness, even. Many nights, I would turn to him and listen to him breathe, sonata-like and reassuring. I found my warm spot from the most ordinary of things. “Thank you, thank you,” I would whisper, sometimes waking him up for the pure joy of seeing his eyes open and crinkle with his smile.

Cut to Friday’s appointment at UCSF. The doctor was an hour and forty-five minutes late, cutting into the lunch hour, while we heard a robust rendition of Happy Birthday belted out by the staff from another room. Deep breathing didn’t seem to help as I began to worry.

Finally, I was ushered in by a Physician’s Assistant, who assured me the doctor was considered a very good and easy-to-like healer.

When he made his appearance 30 minutes later, I wondered why I felt the hair on my neck fly up. He was practiced in civil patter and seemed very knowledgeable about spinal matters; it is his specialty. Soon out of the gate, he began to talk about a tumor no one had mentioned to me. According to him, it had grown big enough to crack the T7 vertebra. Two little “worry spots” on my right lung were soon referred to as “potential tumor building activity.”

He suggested two likely routes of treatment. One was the cement procedure, a sort of in-and-out thing. Except he said he would probably do that if palliative care was all I was after. The other is a complex operation, basically replacing the vertebra with something called a “cage”—which he said would be more painful and longer to rehab than my leg. At this point, I called in Peter. The doctor said he knew I had grown more anxious as he rattled on, and why was that?

I wanted to say, What the Hell? You are talking about cancer here, with a survivor, someone who has thrived beyond simple rehabilitation. Instead, I said, “I’ve endured six major surgeries and learned to walk four times in four years.” He shook his head like a friendly big dog. “I know, but maybe we can cure you with the big operation.” No one has promised to cure me before. We asked lots more questions, including why he was so interested in my case. “I think it would be very interesting to see a surgical cure for a woman of 70 with Kidney Cell Cancer like yours.” I told him I would get back to him after October 10 when all my scans were in and read, but needed to talk to my oncologist first, to which he raised his eyebrows in surprise.

We left then, and managed to make it to the car before we started crying. And yes, I finally I felt it—full- on fear. Not for myself, but for my gentle, intelligent husband, for my family, for the friends, even my sweet little dog Puccini, all of whom saved me from the jaws of death and the cold claw of depression much earlier in this tale.Our weekend was spent going in circles about treatment and the absolutely sickening feeling I couldn’t  seem to shake. I am sicker than I thought.

But then, Sunday morning, I woke up with hard-to-believe joy in my heart. I heard the even breathing of my beloved and our little Puccini. It felt warm in the house. I realized we had slept in slightly. For reasons unknown to me, I raised my eyes and gave a little prayer of thanks. For the love that surrounds me. For another day ahead. For this and so much else. I suddenly felt lucky. And grateful for everything that surrounds me, despite the complex web of uncertainty. I am alive, and that is all, my dears.

Thank you again for your unflagging support and understanding. The future? It’s ahead, and that’s all I know. More details will follow after the 10th.

[peterandviola]

Stubborn as a Coo

Almost four years ago, my husband, Peter, was told I would probably have 1-3 months to live. Thus began our grand, heroic adventure, to live, really live through dire predictions and bad portends. I was barely aware, so sick and sedated I saw things only in abstract. I remember looking up from my sick bed and seeing smiling, egg-shaped heads bobbing on a blue sea. Later, I was told these heads were actually our friends, Marianna and Mike Terhune, and my beloved Peter, leaning over the bed as I cried out in pain. The blue sea was my blue blanket, rumpled into waves of cotton. Such was the onset of my Stage Four Kidney Cell Cancer.

Looking back, I am so grateful at every turn: times when I thought I could not go on, but did. After my surgery, I was transferred to nursing care, where I was the youngest, and I thought, the sanest (although my doctor later said he didn’t think I would ever come back mentally) patient. The first time I sat up was in a steel cage. It was also how I was turned in the bed. It was a while before I could get out of bed to therapy, which hurt like holy hell.

Through it all, Peter came every morning with home brewed coffee, and sometimes fruit salad from our garden. He often brought news of Kenwood, just a few miles away (or a century away, depending on my mood), who he had seen in the Post Office, What Puccini did on his walk, what he had heard from long distance friends by telephone. I soaked up every tidbit; it helped me through some terrible nights of pain and frustration.

There were angels all around me. Linda brought a most beautiful shawl of pink and blue fiber that she had ingeniously woven on her big loom from a Native Indian design. I still wear it, and it never slips off my shoulders. Sharon and Harry came and brought a big thermos of chicken soup so that I could skip the sometimes dreadful food offered at the nursing home. Lytton’s young daughter sent a box of her art, and I had Peter mount it on the wall, so that I could have a smile, no matter which way I was positioned.

Many just came with smiles and warmth that I needed so much. Drew popped in from London. Sally came from New York. Dodie came with flowers from her Kenwood garden.  Bill and Donna and Patrick and Kathleen and Mario and Liz and Fitzie--and others flowed in the door like a healing river. Wil brought a copy of My Brilliant Friend by Elena Ferrante. Kelly showed up shortly after one nasty surgery to remind me what year it was (not 1776, as I was certain.) Andi and Chuck loved and prayed for me. Zoë was a constant, and often brought Brianna and Tiggy along. It kept me alive.

As it would turn out, my shiny, new titanium rod failed. The second rod failed. The steel plate that followed failed immediately. There was no blood left in the femur to attach the bone to any of these apparati. Finally, after many stints in re-hab, three orthopedic operations and an operation to remove my left kidney, I found Dr. Rosanna Wustrek, the wizard of ossi-unification. As many of you know, she replaced the remnants of my tattered, dead femur with a new and highly unusual artificial femur.

It was the answer to a prayer, but not a quick fix. Hundreds of hours have been spent in physical therapy and lymphedema therapy (caused by over-radiation). I have so many to thank for this victory—first of all, my first and equally stubborn home therapist, Debi Stuart, and my lymphedema specialist Teri Burk. Many more hours at “my leisure” saw me move from hospital bed to wheelchair to cane and walking sticks—and finally to an all-terrain walker/rollator.

One morning, I woke up with a crazy idea. I thought I could return to my beloved Scotland and repeat something I did for my 40th birthday—climb the little mountain that marks Edinburgh, Arthur’s Seat. It’s only 828 feet high, there are dirt-packed trails on the back side, so that I don’t have to haul myself up on the rock wall, as I did 30 years ago.  

I will do this on my 70th birthday.

But first, we will be headed to London to see our son, Drew, and his fiancé and their kids Malakai and Ella. Personally, I must do this, for Sarah McLoughlin (my future daughter-in-law) is one of my inspirations. She, too, has struggled through Cancer and is winning. We will always have this bond – a belief that life is not only worth living, but an exquisite and changeable thing that encompasses everything. I must do this, and count every finger and toe. This will be our first opportunity to travel in a long time.

Then, on to Scotland, for a couple of weeks of travel before we land in the beautiful, old city of Edinburgh for my “assault” on Arthur’s Seat.

I do not know if I can make it to the highest point of Arthur’s Seat, but I will be happy if I go 50 yards up the hill. I am a stubborn woman, just ask my head-shaking husband. Still, it’s gotten me (and every cancer survivor I know) up and on with their lives. I hope all of you, living or departed, will look on my sweaty efforts with the joy I feel.

But, the journey has a couple of provisos. I have a compression fracture in my back—at T-7 (right at the bra line) that will be dealt with upon my return. I have an MRI on the tenth to more fully gauge the damage I am beginning to feel when I am sitting a long time or have fallen asleep in a crazy position. So, the week after I leave the UK, I will be in the Spine Center at UCSF having a consult with a nuero surgeon. Oh joy. With any luck, a relatively simple procedure that involves injecting cement into the fracture should do the trick. If not, there will be updates.

And, probably most troubling is the discovery of two small nodules in my right lung. My oncologist, Dr. Anderson, has put me back on a schedule for scans every three months. It could be the effect of Rheumatoid Arthritis, or it could be Cancer. Unknown and troubling. Another reason I am giving this trip my all, because, if I don’t, will I ever? I better!

I come from a long line of strong women. I mean, really strong, strong like lift- the-Buick-off-the-baby strong. I know this about myself, but I also have deep sensitivities to people and their sadness and pain. I carry these things like saddlebags into my life. Sometimes, it compromises the advances I make in my own life. This year, I have finally come to a point where I have begun to change. While it is of great importance to feel the humanity of others, I cannot carry it all by myself.

I begin each morning with two thoughts: initially upon opening my eyes, I think, “Oh, what a glorious day.” It makes no difference if it is pelting ice and snow. I’m alive, and it is glorious. The second thought that occurs to me is a prayer of sorts, a plea of hopefulness and love. “Please, God, let me be enough.” And that is all, my friends. Hold me in the light, for I am determined to love and live as long and as well as I can. See? Stubborn as a coo.