Final Farewell

On this past glorious Saturday, April 7 (Easter Saturday), John's ashes were lowered into Samish Bay about 1/2 mile off the beach of Larrabee State Park.  This park, situated on Washington's famous Chuckanut Drive, has always been very special to John and I.  Fred Higgins and his wife Carolyn supplied the boat and the three of us headed out at about 5:00 p.m.  My mother, brother Rob, John's brother Ray and his daughter Emory witnessed from shore.  Along with John's urn, I floated a hand-tied bouquet of cherry blossoms from our friend and neighbor Linda Steckler and a daphne odora blossom (one of John's favorites) from our garden.
When John's body was cremated, I asked if a card that I had given him this last Christmas could go with him.  It was an "invitation" to our 30th anniversary wedding vow renewal which I had arranged as a surprise when we were to have been on Maui this last January.  As you know, that trip was never taken.
Among other things that I that wrote to John in that invitation was a verse from a Valentine's Day card he had given me several years ago.  It is the most beautiful card I have ever received and it perfectly sums up what I feel about John.  I'd like to end this blog by sharing those words with you:
     "You are the dream I wake from in the night...
             you are the first sweet morning thing I see.
       You are the bed, the roof above my head...you are the shining light
             You are the home I always hoped love would be.
       You are my sun, my moon, my life --
              My beloved eternity."
Be sure to tell the ones you love that you do indeed love them.  You'll never regret letting them know, without a doubt, how you feel.  I know how John felt about me and vice versa.  We left nothing unsaid.  And I'm thankful for that.
Maybe I'll start a "Nancy's Progress" blog.  Or perhaps I'll just update my Facebook page...now that I've finally succumbed to social networking.  In the meantime, I thank each of you with all my heart for your love, friendship and support.  And I love you, John...for all eternity...Nancy

Let's Raise a Glass

I really should start another blog under another name.  John has already "progressed" to the great wine tasting in the sky or whatever Heaven may be and the only ones making any "progress" are the rest of us still muddling along, trying to make sense -- and SOMETHING -- out of our lives.
However I came across something in this morning's Seattle Times that touched me and I wanted to share it with you.  Although I live in the great metropolis of Blaine (Birch Bay, actually, a "suburb" of said metropolis), I like to get the Sunday Times.  And as I have done since Dad passed away in '94, I read the obits.  Today I noticed a listing for Rick D. Remillard.  I did not know Rick D. Remillard, but in quickly scanning his obituary the word "wine" popped out.  (Thank you Evelyn Wood Reading Dynamics.)
Rick D. Remillard was born in 1959, three years after John.  He loved to travel and he loved wine.  Throughout his brief life he would combine his two passions, tasting and researching wines, while exploring the countries of Europe and beyond.  Rick earned a B.A. in Business Administration from the University of Washington and, after other jobs, became a wine steward for Central Market's Shoreline and Mill Creek stores as well as becoming a Certified Sommelier...no small feat.  Unfortunately, like John, Rick died from cancer at a much-too-young age.
It's too bad Rick D. Remillard and John did not get to know each other.  However, there is no doubt in my mind that Rick D. Remillard and John are raising a glass together and sharing tales of their passions for travel and that ancient nectar known as wine.  I hope they save a nice Chateau Margaux for for the rest of us.
Cheers...Nancy

Joined In Grief

It's been nearly a month since John died.  I don't know if any of you are still following this blog.  I may keep it going for a while.  I suppose the title "John's Progress" is not exactly appropriate anymore.  However, I consider myself John's legacy and -- as such -- am keeping some sort of progress in his name ongoing.
I wanted to share that a dear friend (who John and I actually never met) has also passed away from this horrible, HORRIBLE disease known as esophageal cancer.  Sean Gilbert, the husband of a friend of my cousin Kathy, had to bid his wife and three sons goodbye on March 15.  Sean was diagnosed in late 2010; John on January 13, 2011.  Sean's wife, Julie, and I have maintained e-correspondence throughout our respective journeys.  My heart breaks for the Gilbert family as I know theirs does for me.  I would like to ask that you all keep them in your hearts and prayers...They, as do I, need as many of those as they can get.  Bless you for your friendship and support for me in these hard days of adjustment.  I -- along with the Gilberts -- are looking at an upcoming year of "firsts" that will be difficult to get through.  Julie, if you are reading this, we are ALL walking with you.  And my beloved John is welcoming your Sean.  We are all connected in sorrow and joy...My love and best wishes to all...And, of course, thank you...Nancy

A New Journey Begins

This Saturday is John's memorial service.  And while there are many knowns, there is a great unknown.  Mainly, what will my new journey be like?  One thing is certain:  John will forever remain a part of me.  It was John's wish that, should anyone like to make a memorial donation, the World Wildlife Fund was his choice.  I would like to add and addendum to that.
The care that both John and I received at Whatcom Hospice House was beyond words.  The entire staff -- from reception desk to volunteers to professional medical personnel -- are caring, talented individuals who make a terrible time in life livable.  I would like to ask that Whatcom Hospice House also be included in any memorial tribute any of you would like to make.  I've asked Hospice House that any funds donated in John's name be pooled together.  If enough is collected, a memorial placque will be added to the donor's/memorial wall with John's name on it.  I can't think of a more fitting tribute to one of the most courageous, truthful, kind, loving man I have or will ever know.  I love you John Grigsby.  And I know God and many people love you, too.
Thank you, may God bless you, and may John watch over us all...Nancy

The Journey's End

John passed away at approximately 9:30 p.m. tonight.  One of the nurses, Nirvana, was by his side.  How appropriate that someone with that beautiful name was praying by his bedside when he went home.  Laura and I returned to Hospice House and stood at the door as John's body was taken away.  When someone passes away at Hospice House, their body is washed with lavender water and the body bag is wrapped in the quilt that was on the person's bed.  The staff forms two lines at the front door and a bell is rung three times, saying good-bye and God speed.
It is over.  John is finally at peace...And I have been truly loved and blessed by a great man...Once again, I thank you...Nancy.

And Still It Goes...

The home telephone never rang last night.  So I called Hospice House this morning before getting out of bed to get a status report on John.  I was sad to hear that he is still breathing, albeit in short gasps.  There is no response, no sign of life other than his irregular pulse and his breath.
Before all of this started way back in January of last year, I was in favor of physician-assisted suicide in cases of terminal illness.  And I am affirmed in that belief.  However, John never made those same beliefs clear when it came to himself.  He was most clear on his wishes to withhold life support, including fluids and nutrition.  Unfortunately his body was so healthy...other than the bloody cancer...that his heart keeps beating and his organs keep functioning; with the exception of his kidneys which have greatly diminished in their output of urine.
So here I sit with Laura by John's bedside.  We've tried prayer, having a minister bless John, beg, threaten, released a balloon to the heavens...Nothing seems to help him.  I've asked John to open his heart to the love that is all around him; to reach his hand to those who will welcome him Home.
I love John Grigsby.  I ask God to love him, too...My thanks to you for your support and prayers...Nancy

Friends

Last night I called Laura, our neighbor and friend from our Bothell neighborhood, and asked if she would come spend a night or two with me.  True to form, she dropped everything, called work to say she would not be in for a couple of days, and came to Hospice House where we both spent the night with John.  (Granted there was time when this sleeping arrangement might have raised some eyebrows.  But Laura's a true friend who is not worried about her reputation.)  I was originally planning to go home last night, but around 10:00 we decided to stay.  And another friend of John's -- one of his wine buddies -- Alan French came from Ferndale prepared to sit the night with John as he thought I would not be here.  What a wonderful, kind gesture...And what wonderful friends John and I have!
John's night was spent with cheyne-stokes respiration and congestion settling into his lungs.  This morning, as Laura, the cats and I sit by his bedside, we are all praying that God will take John home now.  I sense the loving presence of others who have walked this path before John, waiting to welcome him.  So I'm asking all of you to pray, meditate or reflect that John will let go of his tired body and go to prepare a feast for us all that will be ready for us to share when our time comes.  There is strength in numbers...Let there be strength in prayer.  We are all better people for having walked this terrible journey together.  But we are also better people for having had John in our lives.  Once again, I thank you all for your help and I thank God for friends...Nancy

Help Along the Final Journey

Today John and I decided that it would be best for him to accept an additional drug:  Versed (prounounced ver-said).  This drug is used to produce sleepiness and is commonly used for outpatient procedures such as colonoscopies.  It also allows patients to forget unpleasantness or discomfort.  And it is used to assist terminally ill patients cope with the anxiety and pain that is sometimes associated with death.  The medication is administered via a picc line which is inserted midway up his right arm towards his collar bone.  This picc line does not invade as far as his previous chemo lines did.  Those went into his chest cavity near his heart.
John is now, basically, unresponsive although he did "wake up" when nurses changed his position earlier this evening.  I, along with his brother Ray, were with John during the picc insertion and I received one last gift.  John gently pulled me towards him, kissed me and his last words were, "I love you."
This journey has been life changing, horrible, spiritually awakening and extremely personal.  Everyone will travel their final steps in their own way and those accompanying the traveller with cope differently, too.  I have been told that I am "strong" and that some friends are "proud of me."  That is wrong.
All I have done, and hope that I can continue to do, is love my husband and honor to the best of my ability the vows I made on the day we married.  If I have appeared any way more than that, it is only because of the love and support from all of you.  When the time comes for you to take this final journey, if I can offer a hand, a kind word of support, or a shoulder to cry on then all of this has had some merit and I will be able to justify John's death.  For now I can only say thank you to all of you...And now we wait...There are no words to express my sorrow or gratitude.  Please know you are in my heart always...Nancy

Agitation

I got a call from Kari, one of John's nurses, this morning saying that John had a "rough night" last night.  He was more confused, more agitated and was asking for me.  She suggested that I might want to come in with the cats for a night or two to help him get through this "phase."  I understand that this "phase" is a normal part of the dying process.  So here we are.
John has been getting continual medication for both pain and nausea.  He has had nothing to eat for almost two weeks now; only water and his requests for that is diminishing.  One of his meds (Lorazapam) combats nausea but also makes you sleepy, and they've upped the frequency of his dosage.  As a result, it has been suggested that -- because of his growing confusion and agitation, as well as increased pain -- they might switch out to a medication that would be more sedative.  So John may not be as awake or as aware very much longer.  But I know he would not want to be in pain, physically or mentally, and I don't want him to suffer any more than he already has.  We'll see how tonight goes and judge from there.
Growing up we all heard stories about Mr. or Mrs. So-and-So whose spouse was ill for a lengthy time and they literally spent all their time either taking care of that person or at a hospital bed side.  I can remember my parents saying, "I just can't imagine how they can do that."  Well, I still can't imagine how they could do it either.  All I know is that you just DO it.  Those little words that we say when we get married, "For better or worse; for richer for poorer; in sickness and in health..." are just words that we have to say in order to be married.  We don't REALLY think about what we're saying at the time.  If I knew then what I know now, I would have really meant what I said.  "In sickness and in health..." I'd do it all again, for John.  With God's help, with the care of the totally amazing staff at Whatcom Hospice House, and with your love and support...That's how I'm doing it...Thank you...Nancy

Broken

I'm sitting in bed at nearly 10:00 p.m.  I want to update this blog, but I want to update with something positive.  Okay...
Yesterday John was fixated on numbers.  Don't ask me why, but I'm sure it's the morphine coupled with the dying process.  He wanted 28.
I asked, "Twenty-eight what?"
"Just 28," he slurred back.
"Well," I prompted, "what does 28 mean?"  John replied, "It's the winning numbers."  So I ventured further.
"Do you know what the numbers 2-6-8-2 mean?"
And then, quite lucidly, John said, "Those are the happiest numbers of my life."
Those numbers correspond to our wedding date.
For that little spark of reality, I am grateful...Tomorrow marks (I think) six weeks in hospice.  I didn't think John would be there more than three or four.  God asks much sometimes.  I hope I won't disappoint Him.  My love and thanks to you all...Nancy.

Valentines

I arrived this morning to find Alan French, one of John's wine tasting buds, visiting and John quite awake.  Although John was awake and talkative, what he was talking about didn't make much sense.  As of yesterday, all of his meds are now via his "sub Q" lines (under skin) as swallowing, particularly pills, is becoming very difficult.  He is able, however, to have sips of water.  He has not had anything to eat for about 10 days.  So lack of nutrition and the cancer itself is affecting John's "reality."
Sometimes it's easy to go along with what John says; to agree with him or offer a solution to an imaginary problem.  Other times, I have to leave the room and collect myself in the little chapel room here at Hospice House.  I am 100% convinced that we made the right decision to have John come here instead of returning home.  Our house, OUR home, can remain just that:  home.  Not a hospital or nursing home.
It's been well over a month since I've been home with the kitties.  They bring me great comfort, even when Token wakes me at 4:00 a.m. with his occasional nightly prowls around the house.  I know I will be okay. I know I have friends nearby.  And I know I have you all, walking this path of life with me, caring for John.  So I start another day at Hospice House.  You are all sitting with me in my heart, loving John and praying for peace soon...Once again, I thank you...Nancy.

Pain Control

There's not much to report.  John continues to change and his pain is increasing.  As a result, his morphine has been increased and that means he's sleeping even more.  He's awake very sporadically, is able to communicate on a very limited basis (yes/no answers and a faint, breathy "I love you") and that's about it.
Ray, John's brother, came up yesterday and stayed overnight.  We had lunch/dinner ("linner?") this afternoon.  I think it's the first time in 30 years that Ray and I have spent any time together one-on-one.  It was really nice.  I have empathy for him...He's lost his mom, dad and now his brother in less than five years.  That's a lot for anyone.  Fortunately he has a wonderful wife and extended in-law family who think think the world of Ray and will continue to be a great support for him.
I keep praying for a peaceful end to John's journey.  It's time.  It's PAST time.  I find it hard to trust in God, or "the Powers That Be," sometimes.  But trust and faith are what carry us through.  That and the love of friends and family...And I am fortunate to have lots of that...Love back to you all...Nancy

You Look Familiar, But...

I arrived at Hospice House a little later than usual today. Housecleaners Samantha and Beth were scheduled and I stayed home to let them in and to put the kitties in "lock-up" in the studio. When I walked into John's room he was sleeping. So I quietly put my backpack, coat and purse on the daybed...which of course woke him up. He looked at me with a quizzical look on his face, not smiling at me like he usually does. I sat on the chair next to the bed, took his hand and said hi...No reply or look of recognition. I asked, "Do you know who I am?". A slight head shake and I answered, "I'm Nancy...Your wife.". And then the light came on in his face and he knew me.
And so it finally happened. I knew this day would come and yet I had hoped John wouldn't make it this far. I feel that I'm ready for John to die. But I also know that, when the time comes, I'll want to scream, "Not yet!". I hope that when my time comes, I'll see John but not have that "you look familiar, but" experience. I would not want to break his heart.
And so we go onward, with God's help and your love...Thank you for it all...Nancy

Small

I arrived in John's room this morning and found him sleeping peacefully.  But I was struck by the realization of how small he is.  And it made me so sad.  I want to remember John the way he was; my gentle-faced, blue-eyed, handsome husband and friend who always made me feel loved...a man who believed in me like no one else...the man who would envelope me in his arms and make the world go away.
I so miss our evening dinners at home.  That was my favorite time of day.  I always had a good home cooked meal (well, OK, maybe too much meal sometimes).  We would have a glass or two of wine and share our day's events at the dining table.  Sounds kind of like the '50's, doesn't it?  Well maybe it was, but it was the best.
I often wondered if I did the right thing by leaving the "corporate world" those many years ago.  But I believe, and John always said, that our quality of life was better for it.  I have had the best life, creating a home for the two of us and branching out into art and teaching.  No matter what I did, John was my biggest fan.
I hope to continue with the art and teaching workshops.  I owe it to John to do my best...to live the rest of my life in a way that would honor him and make him proud.  I am a better person, a better woman, for having shared my life with this most wonderful man.  He has been my gift from God and a friend to you all...And so we continue for one more day...Nancy

Anniversary

Today is our 30th Anniversary.  And a quiet day for visitors which is good and bad.  Good because the quiet after a busy weekend allows John some rest.  Bad because I find myself looking at the clock and reflecting on what John and I were doing at the same time 30 years ago.
February 6, 1982 was a gloriously sunny day...much like today but there was not a single cloud in the sky. On that day, my mom told me of an old saying, "Happy the bride the sun shines upon."  It must be true.  I have been the happiest bride for nearly all of these 30 years.  The only hard times have been this past year of cancer and, now, watching John slip away.
He's experiencing more confusion and hallucinations.  Nothing frightening though, thank goodness.  And he's sleeping almost all the time.  But as I watch John's chest rise and fall with each breath I catch myself praying, "Dear God, let this be his last one," offered both in hope and fear.  And I keep waiting for that sense of others gone before who have come to bring John the peace he so deserves.
As I recite "The Lord's Prayer" and get to the part "...Thy will be done," I continually beseech God to let my will be His.  But it doesn't seem to work that way.  I must continue to try to adopt the virtue of patience.  I must have patience with God and myself.  I must trust to God's will and to the love and friendship of those who have come with us thus far...I thank you...Nancy

The Journey Is Nearing an End

Today brings bigger changes for John.  He's experiencing more moments of confusion and it's become very difficult for him to talk.  Everything from raising his hand to scratch his head to focusing on conversation is evidently more and more challenging.
Arrangements have been made and all is in place, including John's acceptance of the next phase of his life. I will keep you all posted...Our journey together is coming to an end, mercifully but with great sadness.  John touched so many people in his life:  his tackle and fishing customers at Sports West; his fraternity brothers at WSU; his friends throughout life; his customers and co-workers at Haggen; neighbors; family; but, especially, me.  We are all better people for having had "Hon" in our lives...Thank you...Love to you all...We go forward together...Nancy

Birthday

Today is my 56th birthday.  And, like last year's, it is an extremely difficult day.  Our 30th Anniversary is this coming Monday.  People have said to me, "You're so strong..."  Well I tell you, I'm broken.
John was in hospital on New Year's Eve.  If I had heard one more, "Happy New Year!" I would have "gone postal" right there on the third floor of St. Joe's.  Event days, like birthdays and special holidays, are impossible to ignore yet excruciatingly painful to recognize.  I did go out for lunch today with friends, Jerry and Geri Hill -- yep, they're married and share a somewhat common name...no excuse for forgetting either one's moniker -- which got me outside on a beautiful, sunny day.  But I'm afraid I was not the best company for the Hills.  Thankfully they are good people and good friends.
I don't know why good people like John have to suffer.  Nor do I know why reasonably good people like myself have to get dragged along.  All I know is if anything, ANYTHING good comes out of this hell it has to be the realization and appreciation of the goodness in people.  I truly don't know how I am getting through all of this without the loving support of friends and strangers who have come on this journey with John and I.
You've been praying for John all these long months.  I'm asking that you say one for me.  I am so very weary and I long for peace, both for myself and for John.  Your prayers mean the world...With loving thanks...Nancy

Happiness

John had a few visitors today:  my mom and dear family friend, Joe Macri; Michael from Haggen; and Jerry Ernster.  Also a couple of friends from one of John's wine tasting groups, Bob and Jenise Stone (I hope I spelled Jenise correctly!) came by while John was napping and brought me dinner of smoked salmon and some broccoli/bean salad.  Thank you!  Much better than the frozen pizza I had planned to nuke this evening.
We also had a visit from Muriel Ferguson, a chaplain from St. Joseph's Hospital who we have come to know throughout this last year of cancer treatment.  She wanted to talk to John about "spirituality."  Not religion or faith, but "spirituality."  She asked John about his values.  He replied that to him, honesty is what matters most.  Always tell the truth.  And do your job -- deliver on your word.
She also asked John if he felt that he had accomplished his goals in life.  Without hesitation he said, "Yes." When Muriel asked in what way, John replied, "I've had this wonderful woman in my life."  And he looked at me.  That, my friends, is pure happiness.  I am honored and blessed to have mattered that much to  the most wonderful man in the world...May each of you experience such happiness in your life...And the journey continues...Nancy

More Gradual Changes

I've "checked in" for a couple of nights with the cats in John's room.  He's always glad to see Abigail and Token (and me, too, I think), and Token literally revels with all the attention.  It only took about 15 minutes for word of their arrival to get out before his fans started dropping by to marvel at the "Amazingly Handsome Token" and pay a courteous nod to sister Abigail.
John's kidneys are slowing down in their urine output, which I believe indicates the beginnings of renal failure.  Don't know how long this will go on; it's in Hands far greater than any one's here.  John's eating and fluid intake has also decreased.  As of 3:30 this afternoon, he has eaten one canned apricot and one canned prune accompanied by about 1/2 c of water for the day thus far.
I wish I had some great words of wisdom to impart or a witticism to lighten your hearts.  I'll just, once again, say thank you for the visits, the cards, the prayers and positive thoughts.  And from John, Abigail, Token and myself...we send you love...Nancy

Bad Day

I arrived around 11:40 a.m. this morning to find John battling some pretty extreme nausea and "stomach distress."  Unfortunately, my mom and brother had come up from Seattle and neighbors Bruce and Laura were enroute.  So I called those I could, per John's request, and asked that nobody visit today.  First time that's happened.  I think it's a combination of a busy visit day yesterday (Saturday) and the disease's progression.  I intercepted my mom and brother at the front door of Hospice House, along with some of John's wine tasting buddies from his "LMH Tasting" group, and had to turn them away.  (If you're reading this, I'm so sorry and I KNOW you understand...I gave John a hug from each of you -- yes, even you brother Rob!)
Friends Pam and Shannon came up yesterday afternoon and spent the night with me.  Something else unfortunate was that Shannon became ill (perhaps too much beer?), so they were heading home without a visit with John, too.
Weekends are good days to visit for most people.  But I've been asked to pass on that it might be best for John to limit not only the number of people in his room at one time, but the length of visiting time as well.  I feel like a real bitch, but it's becoming apparent that John is tiring more easily and the cancer is making itself known more and more each day.
Your calls, visits and support mean so much.  May I ask that you call the front desk at Hospice House before coming to see John.  (I'm not putting the phone number in this blog since it is a "public" space.  Thank goodness for "Google," right?)
And so the journey continues.  I think I can see an end which I both dread and long for.  For those of you who have lost friends or loved ones to cancer, I know you understand.  These roads are tortuous, filled with days of hope and despair.  The heartbreak of seeing someone you dearly love suffer is physically painful and emotionally emptying.  It is my hope that John will not suffer any more; that he'll find peace and calm, and know that he is loved.  I could not greet each day without you all holding my hand and your holding John in your arms....Bless you...Nancy

Time Passes

Kitties came back home Friday and I have been receiving inquiries from hospice staff as to when they'll be returning.  Token was a hit with everyone (no surprise); Abigail was like his "bling" accessory.
I don't have much to report other than John continues to get more frail.  He's eating only about 1-1/2 cups of fruit (raspberries/grapes/canned pears/canned apricots) each day.  His weight (I would estimate) is around 165 lbs...a far cry from his hearty 260 a year ago.
I am spending my days at hospice.  Visitors -- bless you all -- come and go.  It's easier when others are there, providing distracting conversation from the obvious topic.  I remember when John and I were heading south toward California (Disneyland to be precise) on our honeymoon.  We both were delighted in the fact that we always seemed to have so much to talk about...books, movies, favorite activities, college and high school stories, philosophy, religion, history, politics...We were convinced that we'd never run out of things to say to each other.  Now it seems that we've said it all.  Except we never can say "I love you" enough.  Or else we dance around the topic of dying.  John asked me today who the funeral home was that I made his arrangements through.  I told him, "Moles on Lakeway."  Then someone came in (either a nurse or visitor) and spared us the rest.  By the way, I think "Moles" is kind of a weird name for a funeral home, don't you? I mean, cemeteries and all...
One thing I would like to say is, once again sounding trite, thank you.  Thank you to everyone who continues to send cards, provide food, send prayers, emails (I don't always have time to write back but please know I read and treasure each one), friendship and support...Our journey is enriched and made bearable by it all.  You are forever in my heart...Nancy

Getting Un-Snowed

John is progressing along his journey.  They have upped his pain meds from 5mg to 10mg per dose to keep the pain at bay.  This makes him groggy and even more sleepy than he would normally be at this stage.  He is on a regular med schedule in an effort to control his nausea which seems to be working.  His appetite, however, is non-existent.  He eats only fruit (grapes/raspberries/canned pears) and drinks some grape juice or water.  He'll ask for tea, but only takes a sip or two.
I'm taking the cats home this afternoon after four nights at Hospice House.  This has been an enlightening experience for me as I've come to know some of the other families who are on the same path.  It's rather odd to think about staying here, living here, with the cats this week.  People who come to hospice are either in a transition in need of respite care before returning home or on to another facility, or they are dying.  John's neighbors are both in the final stages of life; Kristin (Token's "patient") and Jemimah (real name Maureen).  I had the honor of visiting Jemimah last night.  I've come to know her husband, Tom, and sister, Pat, this week.  Jemimah is not awake or responsive, but I introduced myself and told her about John.  I also said that I was pleased to meet her husband and sister, and that I know they both love her very, very much.  I know she heard me and appreciated my visit.
So Token, Abigail and I have been "living" with death.  I've come to realize that dying itself is actually life.  A part of this life and a beginning of a new one.  Death should not be feared...I actually think birth is tougher than dying.  You come into this world alone, not knowing anyone.  Sure you (hopefully) have parents who will take care of you, love you...and you get to know and love them.  But you still come into an unknown world, not knowing anyone or anything.  Then you live your life, make friends, fall in love, form relationships.  That's what makes dying hard.  You have to say goodbye to loved ones.
But the hardest thing of all is being left behind.  And that fear of abandonment and loss is what binds those of us who have lived here this week during the snow.  Together we share this most personal and intimate experience of this life.  I may not ever see some of these people again.  But they will be with me forever.  They have made a difference for me.  I hope I have done a little of the same for them...Onward we go...I'm holding your hands very tight now...Love and peace to you...Nancy

Another Snow Day

This morning finds snow and ice here in Whatcom County.  I did some laundry last night in Hospice House's family laundry room so I have clean underwear.  Yesterday, John wanted canned pears.  So I ventured to the nearby Sehome Haggen and picked up pears, raspberries, two flavors of applesauce, Gatorade, grape juice and some sushi.  (The sushi was for me.)  Indeed it was icy!  But our new Nissan Rogue handled the trip really well.
John's sleeping a lot more and not talking as much.  Although when visitors or nurses come in, he perks up a little more.  But changes are taking place.  There have been some instances of confusion...Inability to track a football game (Green Bay/Giants); not remembering that he has dressings covering the insertion area of his nephrostomy tubes; and once a sensation of his bed tilting to the side...among others.  It could be medication-related, but my instinct is saying it's cancer and the dying process.  John's appetite is next-to-nil which is to be expected.  Yesterday he ate a few grapes, a small cup of applesauce, a cup of mandarin oranges and a small bite of an oatmeal/chocolate chip cookie.  And the worst of it was that the chocolate chips didn't taste good to him.  (John is/was a chocolate freak!)
I have met some of the other families who are staying with dying relatives...Kristin (Token's "patient") and her family; local "kids"(aged 40+) who are here with their mom; Tom (from Bellingham) and sister-in-law Pat from Winnipeg who are here with Tom's wife Maureen...We are connected by the same bond of having to say goodbye to someone we love.  We share stories and tears -- and the cats are getting lots of visitors, providing my fellow companions in death with comfort.
So we start another day on life's journey.  The weather around here makes getting around difficult, if not impossible.  So get out those jigsaw puzzles...Enjoy family time together...And, when the weather breaks, take those puzzles to a place where other families are waiting, watching and looking toward the time when they can put their lives back together.  The jigsaw puzzles of our lives constantly change, never look the same, but somehow always come together as they should.  Love to you all...Nancy

Snowed In

John woke up this a.m. around 6:00 with more-than-usual pain and a rather difficult bout of nausea.  It's now under control and he's resting comfortably in the recliner in his room.  The nursing staff here is great, and the volunteers who -- in spite of snow and ice -- continue to come to work at Hospice House.  While the nurses tend to patients, the volunteers are taking care of visiting family by providing breakfast casseroles, deli plate lunches and (last night) taco salad for dinner.
I took Token for a second visit to a young lady (Kristin, 32) next door.  She has small cell carcinoma.  The doctors had given her a day or two about two weeks ago, but she is still alert and able to enjoy her family and friends who are her constant visitors.  Her mother asked if I could bring one of the cats for a visit as Kristin has three cats of her own and loves animals.  Token was the only choice as Abigail is not exactly a social butterfly in public settings.  He did great!  He laid calmly by Kristin's side and let her and her 3-year-old son pet him.  He even purred!  Such a good boy.  I told Kristin maybe I should start "pimping him out" as a therapy cat.
Snow is falling, the wind is picking up and I'm sitting in the daybed by the window wondering if I'll be stuck my 2-day-old turkey sandwich for breakfast or see if one of the incredible volunteers is able to get here with something warm for us "homeless" family folk.  Worst case, there is still a plate of pumpkin/chocolate chip cookies in the family lounge.
I keep hoping that this is all a bad dream.  I'll wake up and John will be snoring next to me in our bed at home and I'll be wishing he'd get up to feed the cats so I can stay in bed an extra 15 minutes.  But that "Dallas" episode doesn't apply to real life and I know that I'm not dreaming.  I fed the cats, got my own coffee and settled in to write a note to you all.  You are my strength and support right now...Thank you for helping me and thank you for loving John....Nancy

Family Camping Trip

I'm writing to you from John's hospice room.  Outside his window, snow is steadily drifting from gray skies.  All is peaceful.  Even the cats.  Yes, you read correctly...cats.  This morning, I packed up Token, Abigail, litter box, food, toys, treats, scratch mat, kitty blankets (oh, and some of my things, too) for a 2 or 3 night stay with John.  Pets are welcome in patient rooms at Hospice House and "the kids" wanted to see their dad.  John's having a nap; Token's starting to doze at the foot of his bed; Abigail is resting comfortably in her towel-lined carrier; and I'm enjoying a moment of calm.
John is changing.  He's not eating except for a minute amount of fruit and some fluids and his nausea is almost constant albeit controlled with meds.  His nephrostomy tubes are mostly clear of blood and his kidneys are still producing urine.  But he is starting to feel more acute discomfort in his lower abdomen from the cancer and, today, I see a big change in his energy level -- which was already very low.  They're going to try to get him in the shower this afternoon and put him in some fresh flannel PJs and t-shirt.
I love the snow.  I hope when next winter's blanket of white comes, I'll be able to appreciate its beauty without heartache.  Maybe this is God's way of wrapping His winter arms around us, holding us close as we near the end of this journey.
John told me a couple of nights ago that he didn't want this (his life and our life together) to end.  I replied that the only thing ending is his cancer-stricken body and the pain, suffering and uselessness that accompanies it.  I told John that he is just beginning.  I pray that he can accept and go where he needs to go next...and wait for me.  Wait for us all.  It's going to be grand when we're together.  Love and peace to you all...Nancy

Changing Directions

John had a comfortable day at Whatcom Hospice House yesterday.  Brother Ray is visiting and our dear friend (my "guardian angel" and neighbor from Bothell) Laura, who has been staying with me for a few days.
John's nephrostomy tubes -- still don't know if I'm spelling that right -- are working, although I noticed yesterday that instead of looking like "raspberry lemonade," the fluid coming out is distinctly more red.  Although I'm not a medical professional, this doesn't look like a good thing to me.  However, John's comfortable as they're able to keep his nausea and pain under better control.
John and I talked yesterday and it's his wish to stay at Hospice House rather than come home.  He told me, "I think the house is too big."  What he was saying is that if he comes home, his hospital bed and equipment would have to be in the living area (great room).  He wouldn't have any personal space, people would be coming and going, and he would feel like a piece of furniture.  It breaks my heart, but I believe that -- if we can work it out with our insurance and social worker -- Hospice House is the very best place John could be right now.  I'll be working closely with our social worker to ensure John's wishes are met.
Our 30th wedding anniversary is coming up February 6.  A few days ago when John was still in hospital, he asked his friend Rick Westover to run an errand.  When I came back to John's room from lunch, there was a bag from Haggen for me.  Inside was a package of Lindt Milk Chocolate Truffles, a little stuffed kitty and an anniversary card.  I don't think I need to say more...
As I write, it's 8:15 a.m.  Laura and I are watching the weather report -- snow is coming -- and I'm going to call Hospice House to see how John fared during the night before we leave for the day.  Friend (almost-like-a-brother) Larry is flying in today from San Diego.  Sister-in-law Linda and niece Danielle are coming, along with Laura's husband and John's #1 golfing buddy Bruce.  It's going to be a busy weekend of visitors for John, which is good for him.  Although I treasure every second I have with him, every chance I can look into his loving eyes, every time I can touch his hand...Our friends taking time for him -- for us -- are making this journey bearable.  I love you all....Nancy

Out of Hospital

I started writing a new post before noon today but never had the time to get back to it until 5:30 p.m.  John's out of hospital and is in "transition" from hospital to home via Whatcom Hospice House.   Rather than come straight home from the hospital (which would have been OVERWHELMING since we don't have any equipment like a hospital bed in place), our hospice team and Dr. Nestor felt that a transition stay at Hospice House was best.  This way nurses can monitor his nephrostomy tubes and make sure that John is stable enough to come home.  And Hospice will make arrangements to deliver and set up what we need at home.
The "plan" is for John to stay here up to 7 days, less if possible, and then come home where our hospice team will work out care schedules to meet John's and my needs.  Although all of these is still new to us, I can only say that hospice care is wonderful!  I don't wish an experience like this on anyone; but death is inevitable.  Hospice caregivers are a gift from heaven.  Speaking from experience, I would recommend that, when the time comes, you find your own team of hospice angels.  Bless you all...Our journey continues...Nancy

Hospital Update

John's creatinine levels have come down as of this a.m. from a high of 12 to 6.  Labs will be drawn tomorrow a.m.  This is a good sign.  While 6 is still "dialysis level," we're hoping this level will continue to come down.  John is not a dialysis candidate.
He may be discharged tomorrow...whether that be to home or hospice house, we'll have to make that difficult call when the time comes.  He's very weak, not eating much (like 1/2 cup of food per day) and can't stand without assistance.  We're coming to a crossroads and will be relying on his doctor, Dr. Nestor, and our hospice staff for guidance.  I'm most concerned about making sure John has the BEST care for HIM.
I've been thinking about this long, terrible process from cancer diagnosis to where we are now.  And as we near the end of the journey, I can't help but ask, "Why?"  Something good always comes out of a bad situation.  I hope and pray that maybe, just maybe I will come out the other side.  Bruised, battered and a little broken...but perhaps a better, stronger person.  So many people, friends and strangers, have continually stepped up to offer help and support.  I ask God that I be given the chance to repay some of your kindness in your times of need.  You are, quite simply, the greatest group of people I have ever known...Nancy

Vow Renewals

Well it's nice to be posting something wonderful for a change...And a second posting in one day, too!  John and I just renewed our wedding vows in hospital.  We were going to wait for our friend Muriel Ferguson, a hospital chaplain here at St. Joe's, but she's off for a few days.  And you know how anxious a bride can be!  So before he headed home, our dear aforementioned friend -- Rick Westover -- handled the officiating honors.  It's official...I've made an "honest man" out of John!
We were going to have the ceremony at Kapalua Bay on Maui.  But, obviously, that is not possible.  But this could not have been more beautiful, meaningful...and cheap!  The "minister" performed the ceremony for a hug.
On this happy day, we send you our love and friendship...Sincerely, Mrs. John Grigsby.

Nephrostomy Went Well...

They placed the nephrostomy tubes in both John's kidneys this morning and it went as well as it possibly could.  Whew!  John's kidneys are functioning but he will probably be keeping these tubes.  They attach to a bag(s) (think colostomy only the other side) which will be emptied as needed, probably 4-5 times/day when things settle down.
So we have been given a little more time together, hopefully quality, comfortable time for John.  My cousin Kathy (who lives in North Vancouver) and John's fraternity brother Rick Westover have been here.  As I type, it's 1:10 in the afternoon, John's sleepy and life for the moment is very good.  I'll try to keep this as up to date as possible.
In the meantime, my love and gratitude to Kathy, Rick and all of you for your support and prayers...We are so blessed to have you...Nancy

Two Hours Later...

The CT results showed that John's kidneys are not working.  In other words he is in renal failure.  So the plan is to have nephrostomy (sp?) tubes put in directly to his kidneys to drain the fluid (urine) as the stents are not able to do that job.  He'll have the procedure, which is done under local anesthetic, early tomorrow a.m.  This should help with his nausea and he should be able to resume eating and drinking.
And that's all I know for now...What a roller coaster ride.  Just without the screaming...Love to you all and thank you...Nancy

New CT Scan

As I write, we are in hospital again awaiting a CT scan to see if the stents that were placed last week are still working or if there's something going on with John's kidneys.  He has not produced any urine, except for about 3-4 Tablespoons for the past 36 hours.  A hospice nurse came to the house yesterday afternoon and inserted a catheter with very little result.  So we came to St. Joe's nightmare of an ER, FINALLY managed to get one of their infamous "hospitalists" (the wanna-be-staff docs) to admit John so he could get into "the system."  John has a bed in the day surgery area and we're waiting for someone to take him for his scan.  Labs have been drawn and a urinalysis will be done on the existing urine.
What this shows will determine our next step.  Either the stents are not working and they will be replaced if it's determined that John is strong enough to handle the procedure.  He has had nothing to eat since yesterday and even that was miniscule.  He's had nothing to drink since mid-day yesterday either, but is now receiving IV fluids.  If the scan shows kidneys, we may have the option of putting tubes directly into the kidney to drain them.  If labs show that his kidney function is non-existent, then it's probably time for hospice house.
John and I were to have left for Seattle today in advance of a flight to Maui tomorrow.  We were to renew our wedding vows at Kapalua Bay on the 16th.  We will be married 30 years on Feb. 6 this year.  Muriel Ferguson, a hospital chaplain we have come to know throughout this past year of chemo/radiation treatments here at St. Joe's has offered to officiate.  We'll renew those vows, either here in hospital, home or at hospice house, and mean them even more than the first time we said them on that gloriously sunny day in February those many years ago.
I don't have the energy to check this entry for grammar or check spelling.  This is an incredible journey, one that we all will make at some time.  I was just hoping ours would have been a little later in our lives.  Your prayers are, truly, keeping me going...John sends his love to you all...I send you that and gratitude...Nancy

Sad News

Thursday night, I took John to the ER as he had developed a fever and was having difficulties in the "#2" area for a few days...namely, nothing was going on.  Tests and a CT scan showed that his cancer has spread.  There is a mass in his abdomen and enlarged lymph nodes.  As both his ureters were again compromised, one almost completely blocked, two stents were put in (one on each side) which has alleviated his physical discomfort.
However, after consulting with Dr. Nestor (oncologist) we all concur that the battle is done.  So we have signed up with hospice and will take things one day at a time.  The care that John has been receiving from the very beginning has been nothing short of exceptional, supportive, professional and -- most of all -- kind.
As I write, John is still in hospital and was due to be discharged today.  However he developed some back pain for which he has received medication and a fancy-schmancy heating pad to provide relief.  They'll keep him one more night for observation, just to make sure those stents are doing their job.  He'll come home tomorrow and we'll try to make things as normal as possible.
So I'm asking that you keep walking with us on this last journey, the road not yet taken but an inevitable path for us all.  We're going to try to keep the following thoughts in our hearts as we move forward.  And these are our wishes for you, too:  "Therefore be at peace with God, whatever you conceive Him to be.  And remember what joy there is in silence...And whatever your labors and aspirations in the noisy confusion of life, keep peace in your soul...With all its sham, drudgery and broken dreams it is still a beautiful world.  Be careful.  Strive to be happy."  [The Desiderata]  I wish you all peace and happiness and, mostly, love...And on we go....Nancy