Tuesday, April 23, 2013

On my side of the sky

I woke to the smell of spring drifting through an open window. Just that. The crushing nausea and the pain I that I had known for days was an arms reach away, but it wasn't sitting heavy on my stomach. I smiled.  Tonia was still sleeping beside me. It was an easy glance from her face to the window past and the sliver of sky framed there.

Here's the thing about illness or injury. It can rob us of moments like this. Moments when what is right before our eyes is invisible somehow to our minds. This is why I fought so hard for all the second chances that I'd aided and witnessed. Gored by bulls in Texas, Rammed by buses in Boston. Shootings, stabbings, poisonings. Cancer. If a second chance could be won, that person could find their moments again.

My moment right now asked this question: If this was your last spring, would you celebrate it differently? Would the knowledge that it was the last rob any of it's beauty and joy? In the brief respite of my symptoms I looked tenderly at her face, and at the sliver of sky beyond. Each and every moment that I have cherished blooms anew this spring, and for the times when I can't see them I have transplanted the gratitudes of every other spring right into this one now overflowing moment.

Friday, April 12, 2013

No shortage of friends

When I began this blog, I intended it to be a celebration of all that family and friends have brought to my life. I hoped it would become clear over time that I made no distinction between the sacred friendship I have found in loved ones, and the loved ones I have cherished in other species. I never intended  to use this blog as a place to inform about, of all things, my health.Still, it seems a logical place to continue; so with some hesitation I will attempt to do both. The gifts I have been given by those I have loved I carry with me everyday and everywhere; even to radiation.

Shadrack was not the first horse that I loved. He was the first horse who owned me,or more traditionally stated, he was the first horse I owned. I loved every horse or pony for miles around from my earliest memory. A story circulated for years in my family that I could have died from that love one holiday when I was a toddler. Apparently someone finally missed me in the crowd of visiting family members and discovered the door unlocked. I was found by the top of my blonde head contrasting with snow in a deep drift. When they asked me I am told I answered,  "Horses." One was known to be pastured a half a mile away. I had been struggling that direction long enough to need treatment for frostbite.

Shad was singularly unimpressed with such devotion. At least at first. By the time we met, I was twelve and indeed knew every horse for miles, their preferences in treats, and in most cases, whether their owners were annoyed by my providing them. When Shad showed up in a nearby pasture, I could never catch the owner there to speak with them. The man who leased the pasture, yes, but he was no help at all. I could not even learn the new horses name. I sat just outside the fence line, day after day tossing apple bits, and carrots and sometimes oatmeal cookies in his direction. He eyed me cautiously and slowly grazed closer but at first never took a treat while I was present. How my mother and grandmother laughed later about my reported efforts to make friends with him! While I fretted that his person never visited, I was spending all my free time with my future best friend.

That Christmas morning changed my life. I opened a package containing sugar cubes and a brush, and everyone cried with joy. Until the day my mother died  she retold the story of that Christmas. How a factory co-worker complained that his daughter never cared about the horse he bought her; now she wanted a piano. How my mother often commented that she suspected I was revising old pieces, and not practicing new while I sat at the piano and stared outside. How after the trade was made, great pains were taken to keep the surprise.

Christmas eve after I slept my mother and grandmother braved over a foot of snow to somehow lead a neighing frightened horse away from his pasture.Tied to our clothesline pole over half a mile from his pasture buddy, the neighborhood resounded with near and distant sympathetic neighing. Ever after that night mom's clothesline listed to the left. They had to don boots again and take him back. How their total inexperience managed it all without injury is a miracle to me to this day.

Another foot of snow fell that night. It was a good thing as it turned out. By the end Christmas day, Shadrack had had enough of all the excitement and attention. In our  back yard, with me on his back, he reared three times in rapid succession and became my first runaway ride, all the way back to the pasture.The two foot of snow probably slowed that run a bit. It certainly kept him from falling over backward with me. Never again would he rear without doing just that, no matter how perfect my position bareback or saddled.

That was our illustrious beginning.The best of times and the worst of times so to speak. The dream come true, and the stark realities of it. I wept a tear or two alone in bed that night. I knew that this horse could kill me.I knew that for me, it was worth it. Ultimately Shad taught me so much about life, love and joy; and the responsibility to nurture it. He gave me freedom that tested me in every way: physically, intellectually, emotionally and spiritually. There were those who called him a killer horse, and urged my mother to replace him. It was true enough that you needed to be real with Shad. Don't pretend to know if you don't know. Ever.

He was often with me when I slept under the willow tree. I drifted off to the sound of tall grass tearing, and shorter grass inhaled and nibbled. I knew the texture of a particular mouthful by the sound it made in the dark. We were friends. In my heart we always will be.

Saturday, March 9, 2013


The origin of the word cancer is attributed to Hippocrates (460-370 BC). He described the tentacles of tumors as 'crab -like'. Carcinoma or carcinos. A Roman physician, Celsus in 28-50 BC used the Latin: cancer. Then Galen in 130-200 AD, used the Greek word for swelling, Oncos. No matter what you call it, no one wants to hear the diagnosis; or walk through the doors of an Oncology office for the first time.
I was glad Tonia was able to go with me.

Many of my questions couldn't be answered.At least not at this initial visit. The preservative used with my biopsied tissues apparently degraded the sample so that the markers used to stage the lymphoma couldn't be identified. For now that leaves us dependent on more scans, and the need for a ENT referral. I should know more next week.This update though is not the only reason that I write about the visit. I think it brought me closer to my own emotions about my diagnosis, than anything else thus far. Telling loved ones was more difficult; but I was focused on their well-being. That first office visit was the difference between describing a swim with ice flows, and actually taking the plunge.

It wasn't a stellar beginning to an important relationship either. Although an encouraging sign hung on the waiting room wall, "Let the desk know if you wait more than 30 minutes past your scheduled appointment", in my case I spoke with them twice. It seems I had been actually scheduled an hour later than my appointment time. When I looked around the room, I could only guess how difficult that might have been for some of the people waiting with me. Some were far too young and impatient, and should have been playing soccer on such a beautiful day. Others, wheelchair bound and vacant were barely able to shift positions to relieve discomfort. So here is a bit of advice that I hope you will never need. If you have a loved one or friend facing a first oncology appointment, offer to go with them. If they decline, ask them who is going with them. Encourage them to choose someone who will remember what is said, and with whom they feel most comfortable sharing their emotions.

Note to the person behind the desk:
You don't have to be a nurse to offer a cool cloth to the woman sweating in the corner, in an obvious panic attack. Just do it.

Wednesday, March 6, 2013


Last Tuesday evening, Febuary 26th, my doctor phoned. It was the same doctor who had preformed a routine Colonoscopy, and added an EGD at my request on Febuary 6th.. The same doctor that had assured me that biopsies would be evaluated, but that everything looked good. The mild epigastric symptoms I had been having were attributed to a small patch of gastritis.

This phone call changed all that. Biopsies from the colon were benign. Biopsies from the area of gastritis were not.  It is a type of non-Hodgkins lymphoma referred to as MALT, or mucosa-associated lymphoid tissue. Malt can occur in the eye orbit, the conjunctiva, salivary glands, thyroid, skin, lungs, stomach or intestines. It is typically slow growing.

Tomorrow I may have more information about the stage of my lymphoma. It is presumed to have been detected early since the area looked benign, was localized, and symptoms were mild. I may need further testing. Bone marrow evaluation for example is common. The doctor that gave me the unwelcome news was quick to say that extensive testing had been done on the samples, and  that this type of lymphoma is very treatable. While on the phone with him I was already dreading telling those I love, and so recall only some of the details he provided. The samples were reported as small type B cells, and are associated with the best possible outcomes. Since then I have done a great deal of reading and will go armed with questions.

I will ask for example about the antigens that were found. Were there CD23 or BC1-1 expressions noted? Was  CD10 present? If so, how many? I know that all of this is technical and will mean nothing to you  but I tell you so that you know that I will do all I can to be able to relay accurate information, and answer questions for loved ones and friends.

It strikes me that few who must confront a cancer diagnosis are as fortunate as I, both in terms of prognosis and in how equipped I am to understand the information that I am provided. I have a strong support system also, in Tonia, my son, and the rest of my family. A multitude of friends also offer their support; those unafraid to walk a very human journey with me, and those of the non-homosapian variety who both depend on me, and nurture.

Life is a journey. Each and every one of us have right now to cherish and to build upon. I hope to take full advantage of all of my experiences, and perhaps better equip others to face their own, or their loved ones challenges and to find hyacinths along their way.

Wednesday, February 27, 2013


A few of you may know that some years back I experienced what I can only call a near death experience. Tonight I feel an unsettling sense of surprise that the memory of it brings me no comfort.

I'm struggling, and  I can't tell you precisely why it is worse again. That's just the way of grief I suppose. It sneaks up from behind with increased intensity when you least expect it. I miss JeanAnn, who died so recently on December 6th. I miss Brenda  who died in May of 2010, and my brother Steve, who died in November that same year. They are the most recent holes left in my heart, but there are many others, and. I am feeling them all tonight.

Do you have odd notions about the purpose of your life in relation to those dear to you? I have to ask, because, I certainly do. Always have. Always I have seen myself as part of the fabric of lives around me. A single thread, but woven deeply in and about; helping to hold it all together. Some very important strands in my own life are missing now; and I'm feeling the threadbare places this winter.

Don't get me wrong. My life is rich with friends and family still here with me. Tonia quietly sets a cup of hot tea beside me. Has music softly soothing the pain she sees in my eyes or in the creases around them. She has felt it too today. We have talked about it. Hard to say why  bittersweet memories have crowded so close.

JeanAnn was standing in our kitchen two months ago when she asked me about Brenda's death. They had been out of touch for years. Did my answer provide any comfort? Was it sensitive enough in view of JeanAnn's own illness, and her long ago friendship with Brenda? Maybe not. I think I may have dropped the ball that time. I do believe that if sentience continues after bodily death, the way that both JeanAnn and Brenda believed that it would, they are more forgiving than I of my shortcomings.

Hearing of my 'near death' experience may have brought comfort to my friends. I'm sure it did to my mother; but for me it raised  huge weighty questions. When asked if I would come back, I had answered, yes I would, for my friend. There had been no possibility for misunderstanding at that moment of decision. No looming questions. Moments, or milliseconds later everything was suddenly very different again. I must have meant 'friends' since it was impossible to choose between them. Weren't my family members my very first friends? Every animal I ever met, stray or not, domesticated or wild ? What exactly had I promised?

Is it possible that the entire experience consisted of ions misfiring over random synapses? That meaning was erroneously assigned to it? That the external and tangible events before and after that experience were just as meaningless as the near-death experience itself?
Is it just as possible that the simple act of saying yes was all that was really required? Could  that alone have accomplished something good for my friends?

Wednesday, February 13, 2013

Rusty Roo

On February 9th 2013 my friends on the east coast suffered a fierce winter storm. One source says 650,000 people were without power. Businesses that by their nature can not close exhausted their back-up power, and since winds remained high  restoration couldn't even begin for what must have seemed forever.

It's not hard for me to imagine. I was there in 2003. Snowfall broke records that year. I saw Boston, Dorchester, Quincy, and Worcester, Ma grind to a halt. Cars were lost beneath and behind walls of snow. To free their vehicles, people mountain-climbed and dug down to their car roofs. Fresh from Texas, it was a surreal experience for me and my Pekingese friend, Rusty.

Throughout the night I assessed the situation from various windows and angles. Snow plows barely visible in the blizzard, never stopped and never made any real headway either. Rusty watched me while I watched them, and his gaze grew ever more serious. I finally cut a sleeve from an old sweater, made two leg holes, and dressed for the inevitable.  As non-nonchalantly as possible I opened the apartment door. We were greeted by a free-standing wall of snow. I had to shovel just to reach the building's exterior door.
Eventually we stood on what had been the porch, now merely an extension of the white landscape. The steps were altogether hidden somewhere beneath the immense drift, and navigating to level snow was challenging.  Rusty slowly wagged as if embarrassed at the need for all the effort.

While that first outdoor necessity may have been confusing and embarrassing, it wasn't long until he was frolicking in deep snow. In the interest of avoiding freezing to death, we quickly dispensed with his sweater. He didn't need it, and I needed him to eventually want to come inside.

Tonia took him to a fenced playground one day. With leash removed, Rusty immediately raced the circumference in a series of leaps and disappearances through the drifts. It's a memory that sticks with me.  He had ping-pong ball sized icicles clinging everywhere by the time he was spent. His was one of the most joyous displays I have ever witnessed anywhere; and from a dog who had been grieving himself to death  a few years earlier.

I first heard about him in the hospital where I worked in Texas. That particular evening I was not in Intensive Care. I was filling the role of Nursing Supervisor and making rounds on every unit, and I overheard a woman preparing for discharge talking with her husband.

"If he still isn't even eating well, he is never going to get over losing her. I just can't stand watching him grieve any more.Tomorrow you take him to the vet, and have him put down."

I excused myself for interrupting and learned more. Rusty had belonged to the patient's sister, who died from complications of sickle cell weeks ago. He was a four year old Pekingese, well loved by all, who could not, by any account, adjust to life without his best friend. He had spent days with various family members, and now his last option was exhausted. I offered to take him.

"I don't know," The woman hesitated, ill herself with the hereditary ailment. "he is suffering. I don't want him to suffer."

I told them how I had recently lost Tory, my best friend Peke, to old age. I promised to send reports and gave them my phone number. In the end, I met Rusty after work and took him home.

They hadn't been lying. Rusty was a bit thin, and his thick red-gold fur was tangle free, but without luster. His tail drooped. He mostly kept his head down. He showed little interest in anyone around him. I offered him several types of food that night to no avail. My own. Spike the doberman's dry food. A can of  nutrition packed, appetite stimulating enticement left over from Tory's last days. Even cat food, which every dog I ever knew loves to steal. It truly was heart breaking. He was polite. He never turned away. He even wagged slowly as if to say it wasn't that he didn't appreciate my concern.

The degree of empathy that animals show is no secret to those who have been loved by them. Even so I was touched by the rest of my furry family that night. Feline friends Dinky, and Pal gave up my lap so that Rusty could be rocked in the recliner till morning. Officer Scruff who ruled everyone in the household, curled and purred at my feet. Spike who had not once attempted to nose in on the offered treats  lay on the floor nearby, braving Scruffy's wrath to lend support. When he got up to drink he glanced in Rusty's direction briefly; I'm sure he was demonstrating the location of the water bowl. I thanked him and stroked Rusty until we all fell asleep there.

I know you miss her,fella. She loves you too. She's not sick anymore. You will see her again. I truly believe that. Would you give it a try here for awhile? Shes's welcome to come visit. That sometimes happens you know. 

The next morning, still dressed in scrubs Rusty and I followed Spike out and took a tour of the immediate area. Past the fallow deer we were joined by guineas and ducks, and Charmin the pygmy goat. All the horses pointed ears at him when we walked to the fence line to say hello. Going back inside I thought his step seemed lighter. Although his tail remained down, he drank water, and proceeded to graciously thank everyone for their friendliness. He both allowed and gave brief sniffs indiscriminately. To my delight he also  curled his tail up over his back, and when a bit later I caught him at the food bowl I celebrated

I can't do Rusty justice with my writing. Trying to capture him for you within a few brief stories is simply impossible. He was heroically brave, and marvelously gentle, and one of the finest souls that ever honored me with friendship. He adored Tonia, and I will be forever grateful for all wonderful times the three of us; and sometimes the two of them shared. On rare occasions Rusty had a special visitor. I'd respect their privacy, and afterward he'd come and thank me, and tell me he loved me too.

In the end, she came for him. I like to think she rocked him for awhile.

Sunday, February 3, 2013

Salix ×sepulcralis Simonkai

While she lived, I never knew her real name. She was simply my friend. Always there. Almost always had been. I barely remember the day that she arrived. I was small enough to still need help onto my swing set, and old enough to repeatedly chant the chorus of Mary Had a Little Lamb. If not for The Argument, that momentous day might not have even imprinted memory.

My father won the argument.  Against my mothers wishes, and amid my tears, I was removed from the swing and my swing set was relocated deeper into the backyard. We'd lost a battle of some importance. We had been displaced, my swing set and I.

Of course my tears stopped as soon as I was lifted  to practice swinging my legs again, but from the new vantage point, I watched my parents,  and this newcomer, warily.

For years I wasn't allowed near her. If I ventured too close the backdoor would open and I was admonished to play somewhere else, or told to come inside. Eventually I understood why. My friend was unlike others: fragile in some way. From a distance I watched her grow. In fact, we both did.. She waved at me shyly, I would smile back. She spoke in whispers. Became tall and lithe. She danced sometimes, with long strands of hair whipping. Beside her in rain, I would outstretch both arms and let rivulets course down my limbs. Year after year the bond grew stronger. From her, I learned to love every sunbeam, every drop of rain. I learned if you sit absolutely still, wild bunnies come very close indeed. I learned to appreciate the kind of strength that can be flexible, the kind of silence that isn't empty, and the patience that brings reward. She taught me also that giving freely without reservation or expectation brings a special beauty not easily found elsewhere.

When I began to read, and later to also write, I leaned on her. Often on summer nights I fell asleep star gazing beside her. One of my earliest attempts at poetry began with a line in her honor. "I loved a willow tree once, and neath her slender branches, I'd never known a rest so sweet."

She lived to see my son tickled by her branches, tiny fingers curiously stroking. Somewhere a photo captured him squatting beside her peeling an Easter egg. Then suddenly, in a late and fierce winter storm, she died. Working together, Shadrack and I did what was necessary.With rope around the saddle horn we carried her to the edge of the field. Her remains became a wildlife refuge. For years each spring I hoped to see some new sprig returning: but she was gone. Gone, but not forgotten.