Sunday, January 29, 2012

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

Tuesday, January 24, 2012

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

Friday, January 20, 2012

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

Thursday, January 19, 2012

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

Wednesday, January 18, 2012

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

Monday, January 16, 2012

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

Saturday, January 14, 2012

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

Thursday, January 12, 2012

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

Wednesday, January 11, 2012

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

Tuesday, January 10, 2012

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

Monday, January 9, 2012

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

Sunday, January 1, 2012

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