Obituary for Sherry Fagerness

Sherry Fagerness passed away peacefully at home on Christmas Eve in the arms of her beloved husband and son.  

Sherry was born in San Diego, California and traveled and lived around the world before settling in Coeur d’Alene, Idaho about 25 years ago.  Her deep spirituality was reflected in each of her relationships. She had a wonderful marriage for 19 years and above all cherished her husband Doug, her son Jes and her extended family and friends. 

Her spiritual life could also been seen in her choice of vocations.  She began her career as an educator and for a period of time was a member of the Episcopal Order of Saint Helena in Vail’s Gate, New York. Most of her life’s work helped children and adults who were deaf or hard of hearing fulfill their intrinsic potential. She worked for the Idaho State School for the Deaf for many years, having a positive impact on hundreds of students and their families.

From her earliest days Sherry possessed an incredible vivacity that imbued her physical, intellectual, and spiritual endeavors. Her garden was glorious, her fresh baked goods sumptuous, her weavings, paintings, and crafts a delight to behold.  Sherry could often be found heading off into the vast wilderness of Idaho with field guide and notebook for adventure, reflection and discovery. Her thirst for knowledge was an unending and unquenchable life’s pursuit. Sherry knew something about almost everything and had the delightful ability to share that knowledge in a gentle and enlightening way. 

Sherry’s family consists of her husband Doug Fagerness, son Jes Fagerness, her mother Edith Walcott and father, Clarence deceased, sister Marie Juncker, her husband Arthur and son Andrew, brother Richard Walcott, sister in-law Cheryll Blair, her husband David Blair and their children Ellen, John, Kathryn, Jay, sister-in-law Marla Morrow, her husband Steve Morrow, cousin Andrea Dixon, her husband Ron Dixon and daughter Aura, cousin Bill McKay, his wife Cathy McKay and children Bill McKay and Kailin, cousin Howard McKay, his wife Sammy McKay and children Kim and Melanie and cousin David, his wife Vicki deceased and daughter Lisa.   

Sherry was a bright, witty and a calming presence to all who knew her. It was her greatest delight to break bread with friends and family and share the bounty of her life with them. We ask all that knew her to honor her memory by sharing a meal, a story, a hug, a warm smile with those you love and hold dear on this amazing journey.

There will be a vigil at St. John the Baptist Antiochian Orthodox Church, 4718 Horsehaven Avenue, in Post Falls beginning at 7:00pm on Tuesday, December 29th, the fifth day of Christmas. Sherry's body will be lying within the nave of the Church temple.  After the Panikida (memorial) is sung Sherry's body will remain for the viewing.  Psalms will be read throughout the nightlong vigil. 

The funeral service will begin at 9:30am on Wednesday, December 30th, and will be followed by a burial service at the Church cemetery.  After participants have had the opportunity to throw a handful of dirt on the lowered casket there will be a Memorial Luncheon to which all who have attended the funeral are invited. 

If you are inclined, instead of flowers whose blooms are beautiful, but short lived, please support the Children's Library in either Post Falls (821 N. Spokane Street, Post Falls, ID  83854-8698), or Coeur d'Alene (702 E. Front Avenue, Coeur d'Alene, ID 83814).  There the wonders of learning will bloom in children's minds to delight them for a lifetime.  Donations made in Sherry's name will support this work, and are congruent with Sherry's profession and passion.   

Longing

I long for my dear wife. I long for her spiritually, emotionally, and physically. I hunger for her. In an attempt to satisfy this hunger I have been devouring our photo albums. We have photos of each other that stretch back to our childhoods. Sherry created extensive albums of her semester in Mexico, her year abroad in Spain, as well as her years in Australia, New Zealand, India, and Fuji. She also kept detailed journals of her life experiences since she was 16 and travelled to Mexico, then to Europe, Australia, Humboldt State, working at the service club, , graduate school in Oklahoma, life at the Convent, working at the state school in Maine, moving to Idaho, carrying through to a couple of weeks beforel she died and was no longer able to write. She asked me to keep the specifics private, and I will steadfastly honor that request. While Sherry has over the years told me many of her stories there is much more. I am becoming more and more aware of the depth and complexity of the woman I was led to marry. I am fascinated by the serpentine paths we took to find each other, and I am most grateful that we did.



I am also struck by the intensity with which Sherry sought God; how she continually sought to know herself better so as to fulfill her ministry, which was for her to discover her unique gifts and then to exercise them fully. “To thine own self be true.” And “Know thyself.” are ancient road signs on the path of life, and Sherry adhered to them adamantly throughout her life. She had many gifts. She exercised many of them through her hands—as a potter, as a weaver, as a seamstress, as an enamellist, as a card and collage maker, as a teacher of art, as a pianist. More gifts were exercised through her intellect and through her heart.


Through photos and journals I could track how our love developed over a 22 year period. Our initial friendship was a time when we delighted each other sharing ideas, poems, essays, films, life experiences, and enjoying the pleasure of being on the same wavelength. At the time I was the supervisor of the Kootenai Head Start Center that was located in the former District Developmental Center off of 7th Street in Coeur d’Alene. Sherry’s office for the Regional Program for the Deaf and Blind was located across the hall from my office. Center staff noticed as our time together increased from casual smiles and greetings to morning coffee and end of the day goodbyes that often extended into the evening. How could staff not notice when we did such things as stand in the rain outside the building talking for an hour and a half after work? Sherry knew before I did that she wanted more from our relationship. Finally, after cross country ski dates, dinners out together, bike rides, concerts, and movies we became romantically involved. We were energized by the wonder of each other, and savored our intensity and joy together. Our love grew. We had our separate houses, but were spending nearly all of our time together in one house or the other. Again, Sherry was more aware that I of where the amazing synchronicity between us could go. We spoke of it and I was thrilled that Sherry actually wanted to marry me.


We married on August 11, 1990. Our wedding photo album reminded me of more details of that wonderful day when we consummated our love with the sacrament of marriage. The album also contained photos of our honeymoon where we backpacked, first up the Queets River to sleep a hundred yards from where a herd of elk was bedded down. We listened to the cows bark to the calves and caught whiffs of the sweet smell of the herd. Then we hiked up the Quinault River into the Enchanted Valley where we were lulled to sleep by river song, and greeted the morning by plunging into the cold river, shouting our shock as we entered this primordial baptismal together. Our last hike was the Lake Ozette trail that snakes through the forest with boardwalks over the marshy places, and then follows the coast line south to pick up the return leg of the triangle. On the rocks by the ocean ancient petro glyphs chronicle marriage and other aspects of Makah life. It is a sacred place.


We returned home to begin a 19 year long adventure. Our relationship continued to grow as we planned together, competed home projects together, gardened together, laughed together, cried together, loved together. We were both amazed at how “better” became “better yet” continually in this rich, playful, and mysterious country of marriage.


The last three months after Sherry was diagnosed on September 16th accelerated our growth at a dizzy rate. Knowing the prognosis of the glioblastoma diagnosis stripped any pretext to bare authenticity. We got to spend more time together than we ever had, and we filled that precious time. I knew clearly that I was where I was supposed to be, and there was no place I would have rather been.  As Sherry’s capacity to perform various tasks decreased I was honored to help her perform them. We found our pleasures as we could. Hot showers were sheer bliss.  Between stints in the hospital we took them every other day.  After transferring Sherry to the chair in the shower I would get in with her. First I would lather up the bath poof with Dr. Bronner’s lavender soap, scrub her back with slow, gentle rubs, and then hand her the poof to wash what she could reach. Then I would generously squirt pools of baby shampoo into my hand and massage Sherry’s head with it. She loved to have her head rubbed so shampooing took a long time even after most of Sherry’s hair had fallen out from radiation treatments. When finished I took the hand-held shower head off its bracket and rinsed Sherry’s head and her back, then handed it to her to complete the rinsing. Finally, I hung the hand-held back up, increased the water temperature and directed the water from the overhead shower head onto Sherry. She swayed slowly side to side on the shower chair, basking in the steamy, sensuous hot water. When she said, “ Enough,” I turned off the shower, opened the shower door, and helped transfer her to a towel to sit on, folded over the closed commode seat. To do this she put her arms around my neck and I put my arms around her under her arms. She stood and we lingered in the shared wet warmth as we shuffled in a slow dance to the seat. After she was seated I handed her a thick bath towel, and moved her hair dryer, brush, and lotions within her reach.  


After Sherry returned from the hospital for the last time she couldn’t get out of bed, so we did bed baths three times a week with the capable assistance of the Hospice CNA. Our pleasures were soon transformed to feeding Sherry my sister’s applesauce with a teaspoon. I was ready to spoon the sweet bites she loved into her eager mouth. She would smile, look up at me, and say, “Thank you.” I melted in joy and enchantment.


My love grew deeper and deeper, driven by the service I was privileged to provide. I cherish this affection and devotion each for the other. Sufficient was holding her hand and assuring her of my promise to never leave her alone in the world.


So, Sherry seemed always to be ahead of me in her awareness of how our love grew out of a strong friendship, through engagement, to the strength of the commitment of marriage while we continued to celebrate this sacrament in our daily lives as one flesh. Now she dies before me, again leading the way. I cannot yet join her and my flesh is torn apart.


In anguish I long for her. I want to talk with her: to question, to learn, to reflect, to deepen. I want to hold her, comfort her, and touch her face as we allow our bodies, hearts, and souls to remember each other again and again and again. Such is my grief.

Arrangements

I completed arrangements at the funeral home today and went out to the cemetery to pick out Sherry's gravesite.  The east wind was brutal and I was inadequately dressed to keep the cold from pentrating.  The wind did serve as a distraction from the somber task of choosing where my beloved will be buried. 


There will be a vigil at St. John the Baptist Antiochian Orthodox Church, 4718 Horsehaven Avenue, in Post Falls beginning at 7:00pm on Tuesday, December 29th, the fifth day of Christmas. Sherry's body will be lying within the nave of the Church temple.  After the Panikida (memorial) is sung Sherry's body will remain for the viewing.  Psalms will be read throughout the nightlong vigil. 

The funeral service will begin at 9:30am on Wednesday, December 30th, and will be followed by a burial service at the Church cemetery.  After participants have had the opportunity to throw a handful of dirt on the lowered casket there will be a Memorial Luncheon to which all who have attended the funeral are invited. 

If you are inclined, instead of flowers whose blooms are beautiful, but short lived, please support the Children's Library in either Post Falls (821 N. Spokane Street, Post Falls, ID  83854-8698), or Coeur d'Alene (702 E. Front Avenue, Coeur d'Alene, ID 83814).  There the wonders of learning will bloom in children's minds to delight them for a lifetime.  Donations made in Sherry's name will support this work, and are congruent with Sherry's profession and passion.   

Christmas Day in the Morning

It is a fine line between a pattern and a rut. Waking at 4:00am has become a habitual pattern, tilting toward becoming a rut. Mostly because I was too tired to clear off the bed, I slept in the recliner next to the now empty hospital bed. It is the sheer emptiness of it all that haunts me.

Yesterday evening, seeing Sherry's body leave the sanctity of our home and its intimate familiarity was wrenching. It's not that the funeral home workers weren't caring, sensitive, and gentle. It was that I was giving Sherry up to be cared for by institutional others, and the nature of that care being an unknown to me. Jes and I were businesslike and efficient in filling out the inevitable forms. We watched Sherry transfered from bed to gurney, then rolled down the ramp, out through the garage, and into the open doors of the hearse. The hearse drove slowly away, taillights turning its exhaust red.  Jes and I turned, walked inside, and held each other up as our bodies convulsed sobs, long and deep. Our loved one had departed in spirit and in body.

Jes returns to Boston on an early flight this morning. He has been here three generous weeks. He couldn't have picked a time more suited to meeting my and Sherry's needs. The value of his presence is inestimable. Now he returns to his Kae, his home, his work, his community. I am proud of his accomplishments. His compassion, kindness, and love serve our tired world well.


I will get out of the house today; outside where my sprit can soar, the ever-present blue dome overhead and the frozen Earth crunching beneath my feet as I take my first steps in gratitude toward the rest of my life.

Sleep in Heavenly Peace

Sherry has died.  She is restored from the ravages of cancer to our memories eternal.  She died this afternoon.  Our foreheads were pressed together, my right arm across her chest holding her left shoulder, Jes holding her right hand with his arm around me.  She was at peace.  Christy, our dear Hospice nurse, and I washed Sherry and dressed her in a regal purple jumper, a complementary purple turtle neck, and, of course, her Birkenstocks.  Her head is resting on the prayer pillow she received from Head Start staff.  Her face emanates peace and contenances a subtle, Mona Lisa smile. 

I am profoundly grateful for being able to participate in this intimate journey with Sherry to the end of her life.  I have come to understand that death is as miraculous a life experience as is birth.  When Sherry died I was in the embrace of my son whose birth experience I also intimately shared.  I was taken by the emotional and spiritual similarities. 

The finality is fresh.  I could not prepare despite my efforts to imagine.  My grief is a deep, dark hole with fragile edges that break off, tumbling into the abyss whenever I approach it to peer into the void.  I hear the fragments tumble, like scree from a talus slope.  I cannot hear them reach the bottom.  I know that the edges will firm, like bark edging over a scar on a newly pruned apple tree. I hope I will be able to dance around the edges, and that the abyss will  be filled with my gratitude as I reflect on what I have received.  I mourn the loss of a deep love, and deep love will heal my grief.  That will take time. 


The present makes new demands.  I have chosen a redwood coffin in which to rest my beloved.  I thought for a long tme.  She may have preferred the simpler pine, but the image of her being enclosed by the wood of the ancient giants triumphed.  I also know that she loved the strong shelter, and the filtered light dappling the soft, fragrant, forest floor under the redwood canopy.  So, today I went red instead of green.


To fulfill her wishes, Sherry will be buried in the St. John Orthodox cemetery on the church grounds in Post Falls.  I will go to pick the gravesite.  Her body will rest in the church for a vigil with members of the congregation reading Psalms over her all night long.  Her funeral will be in the morning.  Which morning will depend on how connections can be made during Christmas week end.  I will post this information on my blog as soon as it is established. 

All Through the Night

Sherry sleeps. Her breathing regular, her body warm, smooth and electric to my touch. She is cradled in loving kindness near and far. Her communication is subtle, non verbal--the raise of an eyebrow or the welling of a slight tear in the corner of her eyes as she is moved. My tears mixed with hers as I read to her cards and letters I had retrieved from the mailbox. She is comfortable and peaceful, preparing to leave this world,  spending more and more time in the threshold to the next. I regret that she cannot tell me more.


I am cradled, too. I am held up by dearly beloved through the strands of Silent Night sung outside our door, through the accappella harmonies of the St John Orthodox choir, through the strings of ethereal harp that connect with my heart and tie our hearts together.


I wait without trepidation. I reject the caricature of faceless death, cloaked in black, and heaving an ominous scythe. Rather, I see light, beckoning bright, inviting and white, returning to vanquish the long dark night. Now is sacred time.

The Path We Are On...

The last four times Sherry has been awake have been stolen by pain. I think it is primarily abdominal pain caused by gas and the slowing down of intestinal activity, though Sherry agonizes over her shoulder, her chest, her abdomen, her chest. It could also be blood clots, a cardiac event, the tumors sending erratic signals, or who knows what else. With Hospice help we have been able to increase Sherry's comfort. The price is that when Sherry is medicated she sleeps. Her forehead is smooth, indicating the absence of pain, and her head is tilted back, her mouth is open. The figures in Picasso's Guernica, mouths open in terror, invade my mind's eye. While Sherry is comfortable, I feel the horror. The root of it is my helplessness. I can tend to her desperate desire for water when she awakens to a parched mouth. I can feed small bites of applesauce and spoon tips of her favorite yoghurt into her willing mouth. When doing this I can also see that her ability to swallow is diminished. She holds water and the small bits of soft, smooth food in her mouth working up to a swallow. A substantial part of the trouble with this is that her ability to take medication is compromised. So, her medications are prioritized. The steroids to control the edema surrounding the tumors are first. Then the seizure medication and so on. Even with these priorities I wasn't able to complete her medication schedule yesterday. Sherry was determined to take the pills, and she did all that she could. To push beyond that would have risked choking. The pain and the sleep rob communication, mugging the opportunities for quiet, intimate connection. I hope for a balance where the pain is controlled, the cause eliminated, and connection elevated beyond reactive custodial response.

The path appears to be narrowing to pain and anxiety relieving medications that are liquids, more easily administered. It is a path through forest floor cushioned by deep resilient duff. It climbs above the timberline to vast meadows where the wind is easily felt but hardly seen. As it approaches the ridgeline leading to the peaks it becomes faint, obscured by wispy clouds as it scrambles to the top.

Jes told me yesterday, his arms wrapped around me, that this was his best Christmas ever. I re-live the grief as I write, and recall with gratitude his strong, supportive arms. I understand what he was saying. I agree. It is a Christmas, as is every Christmas, about unfathomable, inexhaustible, renewable, durable love...

Musings

"I am you, and you are me, and we are we together..."
At least this is how I recall these lyrics that I attribute to the Beetles.  I know that they had lyrics something like these, but my reflection is based on the lyrics I remember regardless of how cloudy that memory might be.

The words came to me this morning while having breakfast.  They seemed to me to capture the sense about what marriage means for me.  I realized that the singularity of this was only the pebble in the pond, and that the inclusive ripples emanating out were profound:  we are ALL we together.

That seems to me to be the truth about who as human beings, as social beings, as the sacred beings we really are.  The illusions are the rifts that we allow to separate and divide us.  Labels and categories that allow us to conceive of "other," of the  "austlander," of "not of the people"--not like us in other words:   thoughts expressed in derisive words that dehumanize and  give permission for cruel, inhuman actions.  We have seen these words and symbols smeared on walls like broken eggs, proclaiming hate and degrading to acts like lynchings, beatings, torture, and war.

Over the ages we have been profoundly successful at killing anyone who dares to proclaim the truth that we are all one: interconnected, interdependent beings whose future is intricately and indivisibly tied together.

The challenge is steep.  To ferret out the hate that can creep into my heart when fear opens the door is a never ending process. While I can articulate this intellectually it is still hard for me to truly, consistently, and fearlessly love my fellows.  


At least I am better able to laugh at myself when I deride the driver who cuts me off in traffic, or the customer who takes 20 items to the "10 items or less" check out counter.  Now to work on disallowing the derision before it begins, or at least to laugh at myself sooner and show these thoughts that diminish who I am out the door...


The challenge also requires taking a stand--bearing witness to truth and justice.  The measure of my courage is the context and conviction of my stand.   It may well be that the call for courage is thrust upon me in a split second  as in when the lion charges in Ernest Hemingway's "The Short, Happy Life of Francis Macomber."  Or maybe it's a more deliberate act like Rosa Parks preparing herself intellectually, emotionally, and spiritually to hold high ground for all of us in the front of the bus.  However it comes, I believe that it will come to each of us.  My hope is to be able to maintain proud eye contact with the guy in the mirror when it comes to me.  

Tea for One

I had my tea alone this morning.   Sherry continued to sleep as I stretched satisfying stretches in the recliner as I took my waking slow.  I went into the kitchen, put fresh water in the tea kettle, put a tea bag in my cup, and cradled my face in my hands to catch the grief erupting from my core.  I didn’t want tea alone.  It wasn’t a matter of no one else being there, it was that Sherry was there, asleep, and my mind wandered ahead of itself to a bleak future where Sherry’s breaths would be no more.  

I brewed the tea, stirred in some sugar followed by some cream.  Sherry had converted me to drinking white tea.  It is soothing.  I wanted some of that.  

I came back to sit in the recliner to sip my tea and to think as the day lightened to somber gray and the deck outside our window next to the pond was glazed by the gentle rain.  I realized that this journey I was travelling with Sherry traversed a high, sharp edge.  I am vulnerable.  My receptors are hyper sensitive; mundane, everyday awareness is severed, my heart is broken open. 

I am not angry.  I do not blame God for this.  I don’t see how anyone could worship, let alone love, a god that delighted, like a cat with a fresh mouse, in such events.   I believe that the shortcomings rest in my inability to understand, to comprehend patterns beyond comprehension.  I am sad.  The eyes looking back at me in the mirror bear deep sorrow.  I believe there are no deals to be cut here; that my job is to embrace, accept, learn, and grow.

I am changed forever.  How this change manifests will take time and reflection to sort out.  My hope is that I will be worthy of the great love I have received.  I don’t think I could sustain this heightened state day to day, but I hope I will be able to be a better lover—a lover of people, a lover of place, a lover of justice, a lover of peace.

Maybe I will come to the place where I know that I can never really have my tea alone.  

Catching Up

The new hospital gowns I ordered arrived with a ring of the doorbell .   I opened the front door as the UPS driver scurried back to his truck.  I promptly removed the three crisp cotton gowns and the terry cloth bib from the packaging and put them in the wash so they would be ready for Sherry when she woke up. 

She had been asleep since 7:15am after a long night awake with abdominal pain that proved difficult to get on top of.  I roused her to grogginess at 1:30pm so she could take her morning medication that I had waited all morning to give her,  After taking the meds she fell right back to sleep, her mouth open to take in and push out deep, regular breaths. 

At 7:00pm I wanted to wake her for fluids, food, and timely medications.  She had drunk only about 7 ounces of water all day, and had eaten only the bit of applesauce I had used for her to take her pills.  I knew her mouth would be dry and I hoped that she would be hungry.  I turned on more lights to softly brighten the room, then put on Bach's Sheep May Safely Graze so Yo Yo Mah's cello could sooth the room while taking note of Bach's gentle vision.  Still she slept.  I pushed the head up arrow on the controls for her hospital bed which brought her to a near sitting position, I washed her face and hands with a warm, damp washcloth.  Her steady breathing continuted, marking her deep sleep. 

I decided to call the Hospice nurse.  She assured me that Sherry was likely only catching up from the night before, but that she would come visit.  I thanked her, then went back to Sherry.  She had begun to slightly awaken.  I had water, carrot juice, and a bottle of Biotene spray ready on the hospital table to aussage Sherry's dry mouth in whatever direction she chose. 

"Sherry.  Do you want some water?" She parted her lips in non-verbal affirmative.  I opened the tab on the water bottle and brought the spigot to her mouth. We repeated this until she had sipped about an ounce of water.  We moved on to carrot juice.  Drinking from the glass in her groggy state proved to be more of a challenge, but she managed a few sips of the sweet, earthy liquid.  I called the Hospice nurse back before moving on to applesauce.  I told her I didn't think she needed to come.  She agreed, but encouraged me to call should I become concerned.  I turned back to the applesauce.  After she had eaten a few bites of applesauce I asked Sherry if she wanted to take her pills with it.  She nodded.  So I floated pills on subsequent bites, announcing their name each time I brought them to her open mouth.  She had a few more pill free bites before she stopped opening her mouth for more. 

Jes had prepared an attractive plate for Sherry that featured quinoa, fresh green beans, and small pieces of braised pork loin.  But Sherry did not want any more food and pushed her head back into the pillow.  She did nod when I asked if she wanted a new, freshly laundered gown.  So, I put that on her, smoothed the wrinkles, pulled the sheet back up, and reclined the hospital bed until she nodded enough.  Her steady mouth breathing soon resumed.

I read for awhile in the recliner next to her bed, then tilted it back to give in to sleep.  When I woke at 1:00 the cadence of her breath continued as it has been doing since I again awoke at 4:00.  Undoubtedly her mouth will be dry when she wakes up.  I hope she will be caught up after this long, comfortable sleep. I will be ready with the water.   

Sleeping Beauty

Sherry sleeps and sleeps. It is now quarter to nine and she is still deep into a sleep that began more than 12 hours ago. I know that the new medications are contributing. I have been fussing about the house since 7:00am:  filling the teapot with water, measuring Sherry's oatmeal into the saucepan, straightening up, even making a bit more noise than necessary. Around 7:00am is the time that Sherry has been waking up since we returned from the hospital this last time. It has been the best time for our connection, for us to touch hearts, each the others. Because her wakeful time is becoming more abbreviated it has become more precious. Because her voice quality has been so severely compromised what she chooses to say has gained even greater importance.


Having heart to heart time and being able to listen carefully to Sherry's words are essential for me to know how I can contribute to Sherry's peace; what I can give her as final gifts. I don't completely know the attributes of these gifts. I know that a small plate with carefully arranged treats is one of them. She brightened when I brought her a slice of pear tart after her chicken stir fry dinner. A warm washcloth caressing her face is as much of a gift to me as it is to her. The physical things are relatively easy both in presentation and in reading the degree of pleasure they bring to Sherry.

The emotional, spiritual things are more difficult. Is it assurances? She knows my grief digs as deep as my love. She knows that she is ever a part of me. I know, and I have told her, that I firmly believe that all will be well. There may be more that I have not heard or understood. I yearn for her to awaken, smile as I touch her face, and tell me what she needs to say that I might better understand.   I am stunned by the magnitude of the little I ask.

White Elephant in the Room

Sherry's former colleagues creatively included her in this year's office Christmas party by bringing a brightly decorated bag containing, among other things, a copy of the 2010 Infant Toddler Committee calendar. This calendar project is one on which Sherry had worked for several years, so it was heartening for her to see it continue in grand fashion. She was cheered by the inclusion of some of the children with whom she had worked. The bag also contained a magnificent white elephant present, a superlative in the tradition of the party. It defies simple description. It's pink. It plugs in and lights up. It most closely resembles a handbag with a glass bead handle. This thing was destined to mark this year's party.

I opened the card and read to Sherry each of the messages the staff members had written.  She appreciatively whispered each name back to me after I read the signatures for the messages.


Grief snuck up from behind and whacked me alongside the head. The last item I pulled from the bag were photos of the staff at the party. These photos reminded me of how much fun we have had at this party over the years--years marked by who ended up with the best white elephant presents or who did what with them. For Sherry and me the last couple of years affirmed for us a bright future for infants and toddlers in Idaho knowing the enthusiasm, vitality, and competence of the new wave of teachers, therapists, home visitors, and social workers.


Nevertheless, grief struck. I could not hold back deep sobs. All I could think of was that I wanted my wife back. I wanted our elegantly simple life back. I felt sorry; sorry that I hadn't fully recognized the wonder of our life together as it was unfolding. It's not that I didn't appreciate these days, but I felt sorry that I hadn't cherished enough, honored enough my dearest, who genuinely and deeply loves me just as I am. As I wiped away tears I recognized how self indulgent all of this was. It was me that I grieved for. I was feeling sorry for myself. 


If I let them, dark clouds will block the Sun. Today is the bright day to cherish my love. If I don't I will have missed the opportunity to appreciate our life together even though it isn't what it was. After all, today is the only day I have.

Seizing the Correct Day

I woke at 6:15. Trouble was I didn't know if it was morning or evening, day or night. I forced my sleep heavy body out of the recliner and began to look for clues. No pillow or blanket on the recliner suggested that I hadn't slept through the night, or maybe I had just fallen asleep before getting them? Looking out the window provided no illumination. I padded in stocking feet to the kitchen, turned on the light, and through squinty eyes saw that there weren't any dinner dishes dirty on the counter or clean in the drainer.  While this clue had me leaning toward night,  it took the pm after the numerals on my cell phone to convinced me that it was. Sherry woke up, too.  She satisfied her hunger with English muffins, cottage cheese, the ubiquitous Satsuma oranges, and a Majool date, followed by her favorite tea.


I thought about how disorienting and surreal this whole experience has been. The assessor from the insurance company came this week to assess Sherry's physical and cognitive functioning. At one point she asked Sherry what day it was. Luck had it that the assessor wasn't asking me. I drew a blank, then smugly recalled the day the pills from the days-of-the-week pill box came. I supressed blurting it out since it was Sherry's cognitive funcioning that was on parade.


We enrolled in Hospice yesterday. The hang up we overcame was concerning the potential continuation of Avastin use. Currently none is scheduled, though there will be reassessment in mid-January to see if resuming it could improve the qualtiy of Sherry's life.   Once this bureacratic bar was cleared, Hospice immediately began delivering the full range of services. Today our lives are easier in the sense that Sherry is resting better with oxygen to breath and pain medication available when needed.  I can see the depth of the support Hospice has to offer even from this early stage of Hospice involvement. There is so much to learn and the need is compelling when up against the enormity of death.


Jes installed this thing on the music part of my I-Phone called Genius. I decided to let it choose the songs after I had decided to listen to some music.  I put my headphones on to listen while Sherry slept. It chose Simon and Garfunkle's Slip Slidin' Away. That Genius thing might be a whole lot smarter than I first thought. Carp deim!

Early Morning Snow Up to Now

I woke early.  The soft light penetrating the blinds on the front window could be none other than new snow amplifying the dim winter night.  I opened the blinds to a black and white photograph, the pond shiny black, ringed by white rocks. and framed by highlighted service berry branches.   The snow was still falling..  I didn't want to disturb Sherry so I went out into the kitchen.  I figured it was about time that I dealt with the membrillo that had been drying on cookie sheets in the oven.  I took the quince paste out of the oven and cut it into pieces that I wrapped first in that clingy plastic stuff, then in aluminum foil.  There were trimmings that needed to be eaten, so the task was sweet.  I glanced out the window as I finished wrapping the last piece and was wiping off the cutting board.  The snow had stopped. 

I went back to the living room to check on Sherry.  She was stirring slightly, soon awake.  I asked her if she wanted a cup of tea.  She did.  I went back to the kitchen and put on the tea kettle.  I peeled two Satsumas and arranged the slices on a small saucer.  I took them to her while the tea was steeping.  Her eyes opened wide and she smiled. When I came back with the tea, the orange slices were gone.  I put the mug of steaming tea on the bed table.  She settled back waitng for it to cool.  Sleep trumped the tea, and Sherry was softly snoring before the tea had cooled.

I was wide awake and knew that it would never be easier to move the fresh dry snow.  I went into the garage to get my hat and coat.  I looked out the window of our entryway as I was sticking my feet into my snow boots.  A four point buck, right outside, was shuffling through the snow toward our bird feeders.  I considered waking Sherry and opened the door back into the house to gauge the depth of her sleep.   When I looked out the front room window the buck was gone.  The sound of the door opening must have alerted him. Sherry's sleep was still deep. 

I went back out, stepped into my snow boots and quickly shoveled the airy snow off the driveway and walk  Curious, I went to where the buck had been to follow his tracks.  He or some of his friends had already been to the bird feeders.  The ground beneath them was bare of snow and trampled by sharp hooves. The mound of sunflower seeds cast aside by careless sparrows was now gone. 

I  swept the snow off my boots, went back inside, and took the tepid tea off Sherry's bed table back to the kitchen.  I stood by the bed and listened to Sherry's deep breaths for a few minutes, then sat in the recliner with Sherry's laptop.  That's now...

'Twill Be Our Delight...

This is the seventh day that Sherry has been in bed all day. Her strength and coordination have improved to some extent since last Friday when she was admitted to the hospital. In spite of the improvements Sherry is completely dependent on other people to have her needs met. I try, but I cannot imagine what it would be like to lose control of my body where my appendages won't do what they used to do easily, without even thinking. I think that Sherry is looking down the long road to subsequent days. Immediate days hold little promise for getting out of bed. I believe she will do her best to build herself up to transferring from bed to a wheel chair, and to reach her goal of sitting in the white chair (the recliner in the living room) where she liked to sit before this last setback.

What I have seen of this glioblastoma progression is like riding on a roller coaster. After the initial stomach-in-your-throat drop, the climb up the next hill never quite reaches the height of the first one. So it is with every drop and climb that follows, until such point when gravity wins out. The nature of the hills and the reasons for the drops are complex mysteries. There are twists and turns that surprise and stymie. Sherry is showing me the meaning of real faith and courage. It takes everything for her to take her hands off of the restraining bar, hold her arms high in the air, and enjoy the ride.


We lit the gratitude candle tonight as we enjoyed a wonderful dinner of green salad, clam chowder, and Fuji apple slices with curls of Ski Queen Norwegian goat cheese. I made the salad, sliced the apples, and teased curls off the block of goat cheese. I wish I could take credit for the clam chowder. It was a superlative gift, seasoned generously with love.


I am already planning to delight her tomorrow morning with a mushroom-cheese omelet, buttered whole wheat toast made from Great Harvest honey wheat bread, apple sauce, and PG Tips tea. Let's see...some Baroque music? Maybe Vivaldi? Other delights to catch onto--arms stretched hope high in the air with abandon and embrace.

Morning Breaks at Home

We left the Oncology unit at 5:00pm last night.  Sherry was able to transfer from her bed into a wheelchair exhibiting stellar determination and courage in accomplishing that.  We used medical transport to get her home, and when we did Jes and I were able to safely get her into her new hospital bed in the front room.  Jes has been a huge help all all fronts.  I feel relieved and supported by his presence, and consider myself a very lucky dad. 


Soon after we got home the Panhandle Home Health nurse called and then came over to do intake and to check on Sherry.  I felt more confident in my decison to bring Sherry home as opposed to putting her in a rehab center after discussing care with the nurse.  Comfort Keepers will come over today to arrange for the caregiving services that Home Health does not provide.  I am going to start with 3 times a week to help with bed baths.  The frequency and duration of the visits can be adjusted according to Sherry's needs. 


A physical therapist from Panhandle came by this afternoon for the first of Sherry's physical therapy sessions.  We will work on getting Sherry to transfer out of bed into a wheelchair.  We are exploring getting a lift to use to ease transfers.  The goal of being able to transfer without it is primary.  We will also be doing occupational therapy at home.  The goal will be to support Sherry's efforts to be as independant as possible.

The one thing that was missing when we got home was the dust.  Joy had come over early Thursday morning and tackled the house with a dustcloth, broom, dustpan, and mop.  She kept telling me that I was doing a good job housekeeping, but her dust cloth kept coming up, well, dusty.  It's hard for me to accept the extreme kindness we are receiving from so many directions, far and near.  I have heard redundant concern expressed about me as a caregiver.  I appreciate the concern.  The fuel I am running on is love.  There is an abundance of that.  My only concern is that I can tap into enough of it to support community in the way we have been supported as a part of it.  

Sherry slept through the night measuring the hours with deep, regular breaths.  She woke up at 5:00am and we had tea and slices of banana bread, celebrating being home and having another day.  That called for Cat Stevens, so I played "Morning Has Broken" as I fixed Sherry her oatmeal and orange juice. 

The day unfolded unevenly.  Some moments were restful and comtemplative, and others were just downright hectic as several things began to happen all at the same time.  Lunchtime was the former with Sherry feeding herself toast and crab salad followed by a chocolate truffle Mary had left.  Hard work with the physical therapist fell into the latter category. 

Respite came in the afternoon as Sherry settled into a nap.  She is waking up now and I will begin dinner.

Discharge

Our oncologist told us last night that Sherry would be discharged today.  That was the first time I heard the discharge word spoken though I knew that it was likely to be coming soon.  Having her home is precisely what both of us want.  I also feel anxious about it knowing how much care Sherry now requires.  For example, she needs to have her position in bed changed every two hours.  Here at KMC at least two people work together to do that.  I paniced when our onologist suggested that the discharge could be last night or today.  I jumped on today.  It was after 5:00pm. According to the mobility criteria at KMC, Sherry must be transported on a stretcher, so medical transport must be arranged.  Home health care was not set up, nor was any additional care arranged for the care needed beyond what home health could provide.  The oncology social worker was gone for the day.  Yikes! 

Sherry woke up hungry at 3:00am.  I was again ready with the Brown Cow Cream Top yoghurt and the PG Tips tea.  She again ate the yoghurt without assistance, and sipped her tea independently after I handed it to her.  She did ask for another pillow behind her head so she could hold her head up.  She has not been out of bed since she was admitted last Friday.

I have been watching the clock waiting for the time when I can get started on getting things in place.  A discharge/transition meeting will have to be the starting point.  I don't see that happening before 8:00 am. 

Home is pretty close to being ready for Sherry.  I think that area in the living room where her hospital bed is set up is inviting and cozy.  The trick now will be to get her there safely and comfortably with all of the provisions for her care in place.  It's shaping up to be a busy day.

Progress (The kind we like!)

Sherry started the day at 4:00am by announcing to the nurse that, "I want a little lunch!"  I was dozing so I didn't notice that she had pushed the call button.  The nurse pointed out the early hour and asked Sherry if she could get her a snack.  I told the nurse that I had some snacks for Sherry.

I was ready with Sherry's favorites.  In addition to the satsumas chilling on the window sill, I had some Brown Cow Cream Top yoghurt, some Greek God Traditional yoghurt in the refrigerator, and some PG Tips tea in a drawer in Sherry's room.  I held the Brown Cow yogurt in front of Sherry so she could read the label.  She reached for it with her left hand and for the spoon with her right.  The yoghurt vanished with no assistance from me.  I peeled the Satsuma and divided it into sweet sections for her, but Sherry took the mug of tea for herself and held it in both hands while she sipped it.  Sherry delighted in the snacks, and I delighted in the improvement in coordination and fine motor skills that she was exhibiting.

Yesterday, the Oncology staff changed Sherry's mobility status that is posted outside her door from Level 2 to Level 3.  Level 3 designates patients who have the lowest level of mobility.  I knew she was progressively exceeding the criteria for Level 2.  Still, it was disappointing to see what I was observing confirmed on a stark magenta tag.

Today, at 8:30 am the day nurse came in to take Sherry's vitals and to administer morning medications.  A part of the protocol is to check Sherry's strength.  She asked Sherry to move her right foot, which she did.  The surprise came when Sherry moved her left foot.  Not only that, she exerted considerable strength both when pushing her left foot up and pushing it down.  Could she be moving back up to Level 2 in the near future?

Additionally, she seems more alert to me today though it is probably way to early in the day to assess that.   Nevertheless, her voice is a bit stronger, plus both large and small motor skills have improved, and she demonstrated more engagement with the world outside her room as she read the cards from yesterday's mail that I opened and handed to her.  Of course I am encouraged by these changes even though they cannot be given a reason.  I do know that, beginning today, the Keppra (anti-seizure medication) is increasing from 500mg twice a day to 750mg twice a day--a modest increase according to the neurologist.  Other than that treatment has remained constant since Sherry was admitted last Friday. 

Not knowing the cause has not diminished the celebration.  This is the direction for which we have been hoping.

MRI Results/ More Questions???

Our decision to pursue the MRI in spite of knowing that it would be an unpleasant experience for Sherry was first to determine if there were things we could learn from the results that could illuninate a path of treatment that would relieve the symptoms she is currently experiencing, and, second, to learn more conclusively about where we are in relation to the glioblastomas progression and what that might mean in realtion to Sherry's quality and quantity of life. 

Our oncologist reviewed the results with us this afternoon.  The MRI did not show any brain bleeding, any new glioblastoma tumors, or any growth in the existing tumors.  While this is good news, it is not conclusive because some of  the items it did not show might be invisible--maybe too small to show up, or masked by the swelling around the existing tumors--leaving an aura of uncertainty, but better uncertainty than we had before.  Hmmmm...

Sherry had an EEG this afternoon.  When I could re-enter her room her head was plastered with electodes that projected oodles of wires.  The test took longer than I thought it would.  The good news was that the neurologist reported to me right after he reviewed the results.  The EEG did not disclose an obvious source of seizures.  However, the neurologist highly suspects that there have been seizures occurring early on.  They could account for the current fatigueand possibly the intensity of some of the symptoms.  The question remains as to whether Sherry will return to a baseline of last Thursday, or are we looking at a new baseline.  The neurologist will increase the amount of seizure control medication Sherry is currently receiving to a higher but still modest level.  Then it will be wait and see if the symptoms abate.  Because of the tumors such improvement may be significantly retarded.  

Sherry ate dinner, the nurses came in to reposition her and give her timely medications.  She is sleeping soundly now.  

She will continue with her weekly doses of Avastin with the hope that it will help reduce some of the current symptoms.  

There has not been a time set for when Sherry will be released.  In the meantime we will continue to seek meaning and find our pleasures.   

Satsuma

Sherry endured an MRI last night. She was clearly exhausted, her exhaustion exposed by the bright lights at the nurses’ station where Sherry lay on a gurney waiting to go back to her room.
Our oncologist will review the results with us this morning.

Sherry slept most of the night awakening once experiencing generalized aching that seemed to abate with a couple of Tylenol. She woke up about 6:30am. I showed her some photos of a pond that she and Nancy Allison had built at the convent in Georgia. The pond had been restored and the photos revealed a peaceful, meditative place. I also showed her some of the photos of our home. Her smiled as her memories were tweaked by the digitally captured season and occasion.


Sherry is sleeping now much more time than she is awake and her periods of wakefulness typically consist of her resting against the back of her raised bed with her eyes closed. She is unable to move her left leg, and manipulating the silverware and determining the position of the food on the plate and the items on the tray have made it harder for her to feed herself. She delighted in eating some Satsuma oranges. I peeled them for her, one after the other, and watched while the cold juice from each of the sections burst sweetly in her mouth. She nodded and opened her mouth indicating, “More!” until three of the Satsumas were gone. There are more waiting on the cool windowsill for when she wants them.


Sherry’s voice is weak and hoarse. The steroids, or perhaps the oxygen she was receiving while in ER, seem to be drying out her throat so she is reluctant to talk, and it is difficult for me to understand her when she does. I clearly understand her smile, her open eyes, the nod of her head, the squeeze of her hand, and her softly vocalized, “Um, hum.” Talking on the phone is beyond what she is able to do at this time. 


The hospital bed is set up in our living room at home. It has on it an air pad whose panels alternately inflate and deflate that should, along with diligence, prevent pressure point ulcers. Cheryll and David Blair, my sister and her husband, found a mattress pad and sheets that fit the bed for us, and I have Patty Evan’s quilt ready to keep the bed warm. Sherry is the only missing item. There hasn’t been any indication that she will be released soon. That is a mixed blessing. Of course I want her home and she wants to be there as well. I watch as the team of caregivers here in Oncology kindly and promptly respond to Sherry’s needs, medical and physical. I know that care for Sherry when she returns home will be beyond my capacity to deliver. I am anticipating the transition planning so that everything needed for Sherry's care will be in place for when she returns home.

Bitter Cold

At 9:00 Sunday night Sherry was sleeping soundly.  Her deep rhythmic breathing was syncopated with soft snores.  The night nurse dutifully came in announcing, “Sherry, I’m going to turn your light on.  I’ve got your night time medicine:  insulin, Zantac, Keppra (a drug to prevent seizure).  The rhythms of medical necessity pounded harsh counter point.   

It’s getting hard to determine what Sherry’s natural rhythms truly are, or to know if they are being pharmaceutically consumed.  We did know that there were three hours of potential sleep before the midnight medicines:  Dexdron (8mg every 6 hours).

We don’t know what tomorrow will bring.  I will pursue the installation of the hospital bed at home Monday morning.  I don’t know if it comes with linens or not (I suspect not), so that will be another thing I will want to get done.  The most important thing will be hearing the medical report from the doctor when he makes his morning rounds.  While Sherry is certainly better than she was than when she was hauled into the Emergency Room on Friday.  The disturbing thing is that some of her symptoms continue to worsen in spite of the large doses of steroids.  She can bear no weight on her left leg.  This means that she will have great difficulty getting out of bed.  More significantly the continuation of symptoms tips causality toward the theory that they are being caused by the progression of the tumors, if such a horrible thing can be referred to as progress.  

Many question marks haunt our minds.  When will Sherry be released to go home?  What will it take to ensure that she gets safe and appropriate care when she gets there?  Is there any way that we can learn about what the future holds?  

Things can change so rapidly.  The soft snow of last night has left naked ground  exposed to the freezing arctic front.  Tender roots suffer.

Storm Warnings

The day started gray.  Sherry called out from the recliner where she was sleeping at 4:00 am telling me that she was experiencing pain in her knees.  I gave here two Acetaminophren gel caps and pulled up a chair next to her.  I was immediately concerned about the blood clots. I knew that they could hurt, but I didn't know what the hurting meant.  After a relatively short time the pain was managed and Sherry dozed off.  By 8:00 am, when Sherry could have another two gel caps she didn't ask for them, but did disclose that her knee pain was something that she had experienced before the tumors, so I decided that it was not likely attributable to the blood clots.  I noticed that she was having a harder time getting up and navigating with her walker, even with me providing constant guidance.

By early afternoon, Sherry's condition had deteriorated to a point where she could offer absolutely no assistance to getting her up or doing anything else for that matter.  She also began episodic involuntary twitching of her arms and legs.  Very disturbing.

My phone calls to doctors only got me voice mails, and I could observe further deterioration while making my phone calls.  I called 911.  Firefighters promptly arrived, loaded Sherry onto a gurney, and transported her to Kootenai Medicals Center's Emergency Room.  After a plethora of tests and a seemingly endless wait, Sherry was admitted to KMC, Oncology, Room 109.

Our oncologist came to see Sherry while she was in the ER room.  He thought that the options were twofold:  1) that the swelling caused by the radiation therapy could be causing symptomatic trouble, or 2) the tumors are not managed by the therapies and are progressing.  It appears that the weaning from Decadron, the steroid, was too precipitous.  Sherry did regain some of her vitality about an hour after receiving a 20mg injection.  Her total dose at home as  4mg. given as two 2mg tablets twce  day.

Sherry will be hospitalized through the week end.  That is a huge relief to me.  I could not care for her at home in the condition she was in last night.  I do anticipate improvement as the edema from or around the tumors is controlled by this steroid.  I will be able to get a hospital bed set up at home to make her homecoming easier

When I emerged from the windowless rooms at the hospital last night  I was startled to see the sudden snow.  The storm I walked into as I left ER was a flutter of gentle snowflakes.  It was a storm to be sure, but not the one that was so menacing in the afternoon.

.

Damn Good Tea for Two

Today began grandly.  We woke early.  I got Sherry a snack of banana pieces and raisins to take the edge off of morning hunger and made us each a cup of tea.  She sat up in the recliner where she is now sleeping, and I settled into a chair next to it, handed Sherry her tea and set mine down on the desk so it could cool a bit. We laughed about how we had just celebrated a trip from the recliner to the bathroom and back--a trip that was both timely and successfully navigated--by shouting, "WE'RE DAMN GOOD!" and breaking into laughter about the absurd juxtaposition of our grand intensity and the smallness of the act.

We sipped tea and enjoyed conversation, mostly about recalling and reliving some of our many interesting experiences.

After tea it was shower time.  The simple exertion of getting in the shower and washing reduced Sherry to a state of exhaustion.  It was hard to get her out of the shower because she just couldn't offer me much assistance.  The raw grief in her words, "I just can't do anything!" tore an empty place in me.  I dried her and dressed her using the minimal assistance she bravely offered.  She was doing the best she could do.  Usually, getting her fleece pants on backwards would have been funny.  This time it just left me upset with myself for getting it wrong.  I knew that now was a time for me to get everything right, and flubbing such a simple thing disturbed me.

Our first doctor appointment was at 10:20 am.  Because things took so much longer than usual, I had to hurry Sherry through her oatmeal.  I bundled her up and got her walker, thinking it would be sufficient to get her out to the truck.  It was, but barely.  Getting her into the truck was another matter.  The hard part was turning her as she sat on the seat, so her legs were inside rather than hanging out the door.  We managed, but grimly.  There wasn't a celebration.  We were merely adequate.

Getting out at the Cancer Center was a bit easier, but still posed a challenge:  how to move her legs without twisting and possibly hurting her torso?

We thought we would complete our doctor appointment with our oncologist, entertain ourselves in the waiting room until the Avastin treatment that was scheduled for 1:00 pm.  That's not what happened.  Our oncologist ordered an ultra sound to determine if Sherry had any blood clots.  Her ankles and feet had been swelling in spite of us keeping them elevated in the recliner with a pillow all night and virtually all day.  The earliest they could get us in was 3:30 pm.  So, we decided to go home to eat the snack I had brought to the Cancer Center supplemented with some chicken noodle soup and call it lunch.  We got to the lunch at home, but not after managing the rigors of getting from the truck and back into the house.  I used a wheel chair and the ramp through the garage door and into the kitchen.

I called for help.  Our family physician was kind, responsive, and helpful.  He lined us up with medical transport, which we used to and from our afternoon and what turned out to be tests and appointments that stretched into the early evening.

Sherry does have a blood clot in her left leg.  We have a new medication, Lovenox, that I will administer once a day.  Love knocks?  Door images?  Hard knocks?  Luv-ee-nox is how the medical folks pronounced it.  Fine with me as long as they leave the love in.

We will resume Avastin treatments tomorrow after a two week gap.  Resuming is not without potential hazards, the primary one being brain bleeding.  When walking though a mine field of risks its hard to assess:  risky blood clots, risky brain bleeding, risky tumor progression...then there's all of those pages and pages of potential side effects that accompany every prescription.  A decision is a decision; we won't look back.

What I know is being a good caregiver is not about me providing all of the care.  An essential ingredient is knowing and acknowledging my limitations and ensuring that proper care is obtained and administered. To that end, and to sustain the "WE"RE DAMN GOOD!" I ordered a hospital bed for our front room that will face the picture window that overlooks the pond.  That will make most of the transfers much easier.  I will also be using medical transport until Sherry's condition improves to the point when we can find fun, or at least safety, in the coming and going in our own vehicle.  Our driving about will now be one of the experiences whose recollection I hope we can enjoy over cups of steaming tea.

Key Grip

I feel like I have hold of a rope.  It is a slippery rope that no matter how firm my grip or strong my pull it keeps slipping between my tightly clenched hands.  Maybe a knot would help me hold, but I can’t loosen my grip enough to tie one for fear the rope will pick up deadly, unstoppable speed.  It may be that the rope would move at its own pace, like the trajectory of the waning moon, in spite of my gripping, and that my perception of slowing it is an illusion.  Still, love compels me to hold tight.

This evening Sherry held a spoonful of cranberry sauce in her right hand, her arm crossing over her body so that the cranberries were precariously hovering in space well to the left of her plate and of her placemat. 
“Put this where it goes.” she directed me.

Not sure what she meant, I asked, “Where do you want the cranberry sauce to go?”

“Where it goes!” she insisted.

“In your mouth?” I persisted.

She nodded.  I moved around to her right side from the chair where I was sitting to her left, took the spoon from her hand and put it in her mouth.

“I just don’t know what to do.” she confessed after swallowing the spoonful.  

I had cut up pieces of turkey and had small broccoli flowers on her plate.  I pointed out to her that she could eat them with her fingers.  She did that, dipping pieces of turkey in the small bowl of cranberry sauce on her plate.  When she was ready for her soup, I pointed to the soup spoon and she was able to pick it up and use it to feed herself some of the soup.  The tide of confusion appeared to ebb.

Sherry’s last radiation treatment was on Friday, November 27^th, as was her last round of Temador, the chemo drug she has been taking for over a month.  Her course of antibiotics for the diverticulitis was completed last night, and her dose of flagyl, again for the diverticulitis, was completed tonight.  She is being weaned from the steroids, down to 6 mg. a day from 8 mg.  This will continue for 6 days when she will reduce her doses to 4 mg. a day.  She will resume Avastin IV treatments on Wednesday, December 2^nd.    She will have a MRI in about 4 weeks, her first since diagnosis on September 15th.   Our oncologist cautioned us about a phenomenon he called pseudo-progression, which is to say that the first post radiation/chemo MRI can show that the glioblastoma tumors have grown when in fact bleeding around the tumors is causing the false reading.    It won’t be until subsequent MRIs are completed when a line can be drawn to determine rate of progression.

Who knows?  I do know that my daily assessment is functional and anecdotal.  While this may fly in the face of the empirical, it does frighten me to see Sherry’s increasing disorientation and her increasing inability to remember how to perform basic tasks.  The horror for Sherry is that she is fully aware of what she cannot do, and is deeply perplexed and frustrated by the confusion she feels.

I do know that I need to keep Sherry’s medications straight, and to monitor closely for a fever and high pulse rate in case the diverticulitis or some other infection should flare up.  Plus, I need to engage Sherry in activities she can do without confusion or frustration.  We can share poems, listen to tapes, watch DVDs, recall and share life stories, and I can learn from her vast store of literary and liturgical knowledge.  

I also know that I need to be where I am.  I am fully aware that hazards can await the caregiver.  I am also aware that should these turn out to be Sherry’s last days—and I am visualizing, hoping for the contrary—I want to be with her and do all that I can to improve the quality of those days.  This is not a burden, it is an honor.  Yup, I get tired, and yes I am not the prefect caregiver: at times being less patient than my better self would feign to be.  Fortunately, communication between us is clean and clear; we can quickly find higher ground.

Sherry trusts me completely.  She feels safe with me.  That is sacred ground, and I am learning of the unfathomable depth of love. 

Unplugged

I have been unplugged the past few days.  I haven’t written a blog entry since November 24^th, I just got around to retreiving voice mail, am negligent in returning calls, and I haven’t answered e-mails either.  I don’t know why exactly.  Maybe it’s just that technology isn’t at the top of my list of things I am thankful for.  

Thanksgiving found our gratitude candle burning all day long and well into the night.  We chose to have a quiet, private day at home.  After the litany of medical appointments, home, with no place to go sounded like the right thing to do.  I think it was.

It was a day of remembrance and reflection for us.  We didn’t spend a lot of time with the generic, genetic unknown beings who prospered or at least endured over the centuries through famine, pestilence, plague, war, fire, flood, and all of the other disasters that pockmark the human condition.  We did gratefully acknowledge the genetic strand they carried forth that made it possible of us to have a life, let alone the rich and rewarding ones we are enjoying.  

Much more time was spent with the known, more recent bearers of our double helix.  I got Sherry’s maternal grandfather’s pocket watch out of her dresser drawer and removed it from the satiny pouch she had made for it after she had it cleaned at a local jewelry store.  It was a timepiece from another time that prompted Sherry to recount stories.  While these stories provided me with only a smattering of the complexity of who Sherry’s grandparent’s were—along with aunts, uncles, cousins—I was able to feel her gratitude along with her .  

I recalled many of the wonderful people who supported, encouraged, and strongly influenced me.  My immediate family came first to mind and Sherry heard stories that I hadn’t thought to tell her before.  I voiced a collage of events: croquet at the Kellers, mince meat at the Gaitins; laughter with the Ottos; exhuberance at the Hosfords; early morning chocolate chip cookies at the Morris home, and much, much more about the strands of joy, pathos, fears, challenge, and triumph that make up the fabric of my life.

Most of our time was spent on the immediate:  a time when we have been overwhelmed by the generous and sensitive outpouring of love we have received since the revelation of Sherry’s brain cancer shattered the world as we knew it; certainly as we anticipated our world would be.

This love was the glue as we picked up the pieces and stuck them back together again and began to embrace this new phase of our life.  

Thanksgiving was in the fullest.  Yet, one day could never contain our gratitude for the many splendored gifts that brought us to this day and give us hope for tomorrow.

Plateau

We have noticed our attempts to normalize, to adapt to, and accommodate the various aspects of the reality we are experiencing.  That is to say we plan and execute a routine that enables us to meet the rigors of the external demands--various and persistent medical appointments--while at the same time finding our little pleasures and giving them prominence so as to not allow our lives to be ruled by reaction.

There is comfort on that plateau.  It is a place with soft edges where we can live.

The difficulty comes when change occurs.  Our corner of the Earth quakes  Deep, perilous chasms open forcing us to find a new path, to make new accommodation, to find new pleasures.

This process is a painful, emotional one.  It brings us to the grim edge where intensity crowds out comfort.  It is also the place where epiphany jolts with bright bolts of new awareness.

The cracks began to open on Saturday.  Sunday was a caution, and yesterday we fell to the bottom when our oncologist suggested that the symptoms could well be the glioblastomas progressing.  We knew that was a possibility, but hearing it directly was  still a crush.  He did shine a faint ray of optimism, again telling us what we had hoped:  that the adverse symptoms were Sherry's body and mind responding to the cumulative onslaught of drugs, radiation, and procedures.  After the appointment we drove out to the lake and parked at Beacon Point where we talked, wept, and allowed ourselves to open,  to reaffirm that we are not in this alone.  We embraced each other and the new reality we were experiencing.  We drove home from west on Sherman to north on 4th where we were cheered by the bike racks, the benches, the kiosks, and the general buoyancy of the work that has been completed there.  Beauty and creativity live!

Today we woke up at 3:00 am.
 "Are you awake?"
"Yes."
"Do you want to get up?"
"Yes!"
"Great, I'll go get the shower ready and start the water for tea..."

We put on the day easily, and arrived at the lab for tests a bit early.  They were completed in time for us to walk down the hall  to radiation, then to our appointment with our oncologist.  We were a bit apprehensive about it because we typically only have one appointment with him a week, and back-to-back appointments are unusual.  We filled the wait time with rich conversation, still getting to know each other after all these years.  When our oncologist came in with the lab reports he told Sherry how much better she looked today.  While the symptoms had not changes significantly, they were now ours and we knew that we could handle them together.

So, we seem to be on a new plateau.  We were thrilled to hear our oncologist talking about MRIs 4 weeks from, now then again in 8 weeks, and again in 12.  It may be that all of those weeks might not be on this same plane.  We are hoping for up, but know there's a down, with meaning and joy and small pleasures all around...

Saturday

Sherry is becoming increasingly disoriented.  Today I was alarmed when she could not find her way from the dining room table to the bathroom, and from the bathroom back to our bedroom.  I had discussed this with our radiologist when we were in for radiation therapy on Friday.  He ruled out the medications and counseled Sherry to take more time to think and me to be patient.  When the disorientation appeared to be worse to me today, I called our oncologist.  He was off for the week end and I got to talk with the on call oncologist.  We reviewed medications and he advised me to watch for a fever or a pulse over 120 in case the steroids were masking an infection.  She didn't have a fever or an extraordinary pulse.  I'm left with thinking that this is possibly a cumulative effect of the radiation, or, dreadfully, that the tumors are growing in spite of all the therapies.  Of course speculating on the cause is just that:  speculation.  My hope is that when Sherry resumes Avastin treatments on Monday her disorientation and confusion will diminish.

Obviously, this is hard for me to see, and it is extremely frustrating for Sherry.  Today was as low as I have seen her.  I decided to get us out of the house.  We went to Creative Elements, an art supply store, where Sherry picked out a couple of drawing pads and some pastel markers of various hues.  We then drove down to the NIC campus and inched our way along the dike road losing ourselves in the antics of the geese and in the expansive view across Cougar Bay and to the snow line skirting Mica Peak.  We continued on past City Park, down Sherman to the east end of town, then took Lake Coeur d'Alene Drive out to Higgins Point.   The bare silhouettes of the trees lining the lake leaflessly flaunted the brisk south wind.  The waves tossed us flashes of sunlight that had escaped through holes in the gray sky.

We were out of the house and out of ourselves.  I made green salads and salmon loaf for our lunch when we returned home.  We took the rest of the day slow and easy, hoping for more light tomorrow.