Susan F. Harper

Susan Freeman Harper.  Born 7-15-1956.  Died peacefully in her sleep 3-29-2010.  She was loved by many, and she will be missed.

Thank you, blog readers, for your interest in Sue's life and your concern and prayers for her and our family. 

During the last several months Sue kept a small book of writings from Maya Angelou near her bed.

The book has been open to this 

Maya Angelou quote for some time:

"My grandmother used to say,

'When you don't like a thing,

change it.

If you can't change it,

change the way

you think about it."

It is my sincere hope that those who've followed

Sue's myeloma journey,

and particularly this last portion in which she showed

unflinching calm and confidence

that death is not something to be feared,

will have changed the way you think about death,

and also about life.

The tense of this blog title is no longer valid.

Has is now had.

Sue loved her life and lived it well,

but she's in a better place now as she knew she would be.

And she is now completely cancer free.

For those who are able to attend, there will be

a memorial service at:

 North Fresno Mennonite Brethren Church

5724 North Fresno Street, Fresno, California

at 3:00 p.m. on Friday, April 2, 2010.

Remembrances may be made to:

Camp Keola

P.O. Box 111

Reedley, California  93654

or

Mennonite Central Committee

1012 G Street

Reedley, California  93654

A Beautiful Ride Redux

Susan came home from the hospital on Friday, exactly one week ago yesterday. It was a beautiful, sunny spring day in California; So when the hospital transport lady and the nurse on duty wheeled Sue out in a wheelchair, dressed in a matching pink and white striped pajama top and bottom and shocking yellow non-slip socks, she tilted her head back and enjoyed the sunshine and the gentle spring breeze running through the hospital breezeway. We loaded Sue into the car and slowly drove home.

The ride home had that surreal, slow-motion feel to it. Sue looked carefully at the hospital and its landscaping, at trees loaded with delicate pink blossoms, at fruitless plum trees in splendid first purple leaf. She looked at them as you might look at scenery you don't expect to see again, committing them to memory. Even the flowers in our neighborhood and in our own front yard looked especially colorful and pretty. We had quite a collection of flower bouquets under the front porch roof, lining the path to our front door. As I took Sue inside in the wheelchair and got her situated in her new bed, she commented what a nice day it was, and what a beautiful ride we had home from the hospital.

Friday morning I had received delivery of the hospice hospital bed, rolling hospital-style overbed table, commode, wheelchair, and supplies. Saint Agnes Hospice provides everything, including medications, syringes for PEG tube feeding and administering medications, pill grinders, disposable gloves, disposable bed pads, disposable diapers, Jevity isotonic nutrition (with fiber) etc. After we got Sue home and situated in bed, a hospice nurse came to the house to give me an orientation and training. Then I was on my own for the weekend. Saturday morning Sue and I interviewed a couple of the in-home-care workers I had contacted previously. We hired one lady, Saroj, to start Monday morning at 8. The in-home-care workers are the only thing not covered by insurance.

Saroj has worked for a week now, from 8 to 4. She's experienced doing in-home care, and she's very caring. She was referred by one of our pastors, and we really appreciate having her help. Both Saroj and I have noticed how much Sue's condition, particularly her physical strength, has decreased during the course of this first week. When Sue came home last Friday she couldn't use her legs or her left arm, and she couldn't swallow, but she could still use her right arm a little and had enough core body strength to sit up by herself in the wheelchair or on the commode. I got her dressed and took her to Church last Sunday in the wheelchair. She slumped over and slept on my shoulder for part of the service, but she was happy to be there. By Wednesday Sue's right arm also stopped working, her speech was getting slurred, she had become incontinent, and she had lost her core body strength. By today, she was like a rag doll when we got her up. Saroj got her dressed though and took her outside in the wheelchair to see her flowers. But we had to strap her to the back of the wheelchair using the safety lifting belt to make sure she didn't fall out of the wheelchair. After 15 minutes outside she was worn out and had fallen back to sleep. So we put her back to bed.

Her recent conversations with visitors don't always track well, and sometimes she doesn't have much to say at all. But still, amazingly, every visitor gets a warm welcome and a smile and some kind of happy greeting. Ask her how she's doing and she'll tell you "Good. Good. I'm happy." Everyone, from family to visitors to hospice workers, have commented how content and at peace she seems.

It doesn't seem fair that such a beautiful person would be knocked down like this. But it's another sunny spring day, and Sue's not consumed with self pitty. She is at peace. She's at peace with her circumstances, and with her decisions, and with the world, and with God. She'll greet you with a warm smile and thank you for coming, then drift back into an oblivious, pain-free contented sleep.

As I sit here looking out the window at the late afternoon, and see the trees and roses and flowers in bloom with spring leaves and colors back-lit by the waning sun, and hear the neighborhood birds and squirrels and dogs, and I think of the hundreds of people out there somewhere, you blog readers included, who have prayed for Sue and whose prayers for her are being answered beautifully, if not differently than we hoped or imagined, I am again reminded of the Gary Allan song "Life Ain't Always Beautiful" I blogged about last June under the blog title "A Beautiful Ride."

"No, life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride"
"What a beautiful ride"

Plan B

Sue's friend, Cindy, once gave her a card that said, "Success in life depends on how you handle Plan B."  Sue has come to understand that the prospects for her attending Jessica's wedding in Idaho are dim, so, because Luke is here visiting for spring break, Sue and Jessica hatched Plan B.

The other evening seven of us huddled around Sue's hospital bed and had a mini-version of the Celtic handfasting ceremony Jessica has planned for May.  First , Sue said a few words, including how happy she was that Jessica found Luke and that she does not have to worry that Jessica might have made a bad choice.  Then Sue read from Ecclesiastes 4:9-13:

"Two are better than one, because they have a good return for their work.  If one falls down, his friend can help him up.  But pity the man who falls and has no one to help him up.  Also, if two lie down together, they will keep warm. But how can one keep warm alone?  Though one may be overpowered, two can defend themselves.  A cord of three strands is not quickly broken."  (and here she pointed out that God is the third strand in their cord)

We then tied the knot on Jessica and Luke.  I don't know if this is where the term "tie the knot" comes from, but the idea is the two to be wedded hold hands and different colors of ribbons, symbolizing different things, are tied around their wrists sort of binding them together, while words are spoken.  Sue and I tied a blue ribbon on their wrist, symbolizing tranquility, patience, devotion and sincerity, and while the gathered few looked on, recited from the handfasting verses selected by Jessica.  I am not allowed to print the whole thing, but a selected section was particularly meaningful, and appropo (apropos, if you prefer) to the moment:  "These are the hands that will hold you when fear or grief fills your mind.  These are the hands that will countless times wipe the tears from your eyes; tears of sorrow; and tears of joy."

It was a time for both tears of joy and tears of sorrow.  But it was good, and gave some closure to all involved.  Following the ceremony I told the happy couple they could kiss, but they still couldn't sleep together until after the real wedding on May 22.  Couldn't brandish my shot-gun, though, since we were in a hospital. (Actually, I don't have any guns.  I've never really wanted one, and anyway I always figured that if I had a gun I'd have a much greater chance of getting shot by Sue with my own gun than by an intruder.)

The whole saga of Sue's cancer and the timing of it and all the "best laid plans" that have "gone askew" and the need to go to Plan B caused me to want to re-read the Robert Burns poem, "To A Mouse." 

To A Mouse, on Turning Her Up in Her Nest, with the Plough - by Robert Burns
(translated to English from the original Scottish version)

Small, crafty, cowering, timorous little beast,
O, what a panic is in your little breast!
You need not start away so hasty
With hurrying scamper!
I would be loath to run and chase you,
With murdering plough-staff.

I'm truly sorry man's dominion
Has broken Nature's social union,
And justifies that ill opinion
Which makes thee startle
At me, thy poor, earth born companion
And fellow mortal!

I doubt not, sometimes, but you may steal;
What then? Poor little beast, you must live!
An odd ear in twenty-four sheaves
Is a small request;
I will get a blessing with what is left,
And never miss it.

Your small house, too, in ruin!
Its feeble walls the winds are scattering!
And nothing now, to build a new one,
Of coarse grass green!
And bleak December's winds coming,
Both bitter and keen!

You saw the fields laid bare and wasted,
And weary winter coming fast,
And cozy here, beneath the blast,
You thought to dwell,
Till crash! the cruel plough past
Out through your cell.

That small bit heap of leaves and stubble,
Has cost you many a weary nibble!
Now you are turned out, for all your trouble,
Without house or holding,
To endure the winter's sleety dribble,
And hoar-frost cold.

But little Mouse, you are not alone,
In proving foresight may be vain:
The best laid schemes of mice and men
Go often askew,
And leave us nothing but grief and pain,
For promised joy!

Still you are blest, compared with me!
The present only touches you:
But oh! I backward cast my eye,
On prospects dreary!
And forward, though I cannot see,
I guess and fear!

Let's Go Home, Kemo Sabe

Fran Striker was the author of the Lone Ranger.  You should be a little older than me to really remember the Lone Ranger or his indian friend, Tonto.  I do remember it, though, and I remember that Tonto used to call the Lone Ranger "Kemo Sabe."  A fair amount of speculation has circulated over the years about the meaning of Kemo Sabe, but Striker's son, Fran Jr., has more or less put an end to the speculation.  Kemo Sabe means "faithful friend."

Chemo Sabe is a term used by a number of cancer people.  There are a couple of books by that name.  One thing I can tell you, chemotherapy is a friend to cancer people, but it's not really the kind of friend you want to have.  There are some situations in life, I guess, where you'll take whatever friend you can get.

But chemo is not a friend of Sue.  Not anymore.  Nor even a companion.  Dr. Hackett stopped in on Wednesday morning and told Sue that Dr. Wolf wanted to start yet another chemo drug on Sue, Cytoxan.  So Sue would have been getting Dexamethasone, Revlimid and Cytoxan. But neither doctor was holding out much prospect of recovery of muscle control in Sue's legs, left arm or throat.  The malignant cancer in her spinal fluid had already done a lot of neurological damage.  Both doctors agreed that the malignant multiple myeloma cells that have lodged in the wall of Sue's spinal column and traveled up and down her spine and possibly into the brain through the spinal fluid, wreaking havoc up and down her spine, makes Sue's an extremely rare and difficult to treat case of myeloma.  And but for the high levels of neurontin and hydromorphone, the pain she experiences is unbearable.

So she said no to further chemotherapy.  It was an informed decision made with doctors, family and friends.  That decision was made two days ago.  Sue was discharged today and is now home.  Her care is now under the supervision of Saint Agnes Hospice. All feeding, fluids and drugs are administered through her PEG tube.  It's not difficult, just time-consuming.  The primary concerns are for comfort.  The orders are DNR -- do not resuscitate -- and don't call 911.

Sue is happy to be home.  We will hire one or more people to help with Sue's daily care needs.  There are nurses and nurse assistants and chaplains who will call on Sue at home, periodically.  You are also welcome to stop and visit, Kemo Sabe.

Letting Go

Lots of movies have gripping scenes where someone is barely hanging on in a precarious life-threatening situation, and others are encouraging them to "hang on" and "don't let go."  Some do hang on and are rescued.  Others don't.

The movie Titanic had a couple of scenes like that.  I am thinking of the scene after the Titanic has sunk when Rose is floating precariously on a flimsy board, and Jack is in the water, holding her hand and telling her "Don't give up, Rose.  Don't you quit."  Soon, though, the freezing water is too much for Jack, and he loses his grip, lets go and slips under the water.  But Rose hangs on and is rescued and lives a full and satisfying life.

Hanging on is not always the best thing, though.  Five years ago friends of ours lost a grand-baby.  The baby was only a few days old when it died.  That was a sad time and there is still grieving over that baby.  Our friends have a little letting go tradition they started on the baby's first birthday.  They buy a happy birthday balloon, say a little prayer, and let the balloon go.  I was over there for dinner tonight, on what would have been the baby's fifth birthday, and participated in the letting go ceremony.  My buddy and I stood there watching that balloon until we couldn't see it anymore.

Sue was in a lot of pain today, on and off.  Headaches, neuropathy, nausea and general discomfort.  You want to be encouraging, but days like this you don't know if it's even right to stand on the sidelines and holler "Don't give up."  "Don't quit."  "Hang on."  "Don't let go."

Someone, presumably Leslie Plyler, posted this letting-go poem as a comment to one of my recent posts.

UNTIL WE MEET AGAIN
In the silence of your slumber
There's a low-lit burning fuse
Your journeys almost over
And you've paid your final dues

Your sun will now be setting
From a view I cannot see
A prism of crystal colors
That plays a beautiful symphony

You'll finally have the option
To soar on the eagles wing
To fly from near the mountain tops
Down to the nearest stream

No more burdens of this life
You'll not find them around
You'll finally be released
Of the chains that held you down

And I won't hold you back
Being selfish with my tears
By dwelling on your life
That you had when you were here

With unconditioned love
I send with thee my friend
And holding memories dear
Until we meet again.

Written by Leslie Plyler
with Dennis Coty 1948-2002

PEGgy Sue

The G.I. (gastrointestinal, or gastroenterologist, if you prefer) doctor, stopped by to consult with Sue this morning.  He's planning to put her PEG (Percutaneous Endoscopic Gastrostomy) feeding tube in tomorrow afternoon.  He says the procedure will take about 20 minutes.  After the surgery is complete Sue will no longer be called Sue, but Peggy Sue.  Her mom's name was Peggy, so it's all coming together here.

Sue was tired today, and slept a lot.  Today was day 7 on the Rev-Dex combo.  The past couple of days she's had persistent headaches in the frontal lobe area, just behind her forehead, and periodically throughout the day she'll have hot flashes -- hot enough to make the back of her neck and head sweat.

We expect to make arrangements this week for home health care and subsequently, if indicated, home hospice care.  We tentatively expect Sue to be discharged later this week or early next week.  Sue has made the choice to wear the DNR (do not resuscitate) wrist band, and we've placed a copy of her Health Care Power of Attorney in her binder of medical information in her room.

Her immediate goal is to try to get well enough to attend our daughter, Jessica's wedding in May.  Her back-up plan is to have all of Jessica's surrogate moms attend, and when Jordan asks "who gives the  bride away?" I am to have them all stand up and say "her mothers and I do."  We have yet to run this back-up plan by the bride to be.

Dr. Roper and the Hospitalist Swing

A number of years ago Sue made me take a class with her to learn how to dance the West Coast Swing.  She was a Cal Poly Aggie in college and a life-time member of the 4-H and the FFA.  I was glad that Kim Buendia made her husband take the same class, too.  Misery loves company, you know.

Left two three, right two three, back step, and left two three, right two three, swing your gal around.   After I got the rudimentary moves down I bought some roper boots, Wrangler jeans, a western shirt, and Sue and I each got a Montana Silversmiths silver belt buckle (indian designs).  Oh, and Stetson hats.  Somehow dancing the West Coast Swing with a bunch of legitimate cowboys and cowgirls at Jim's place in Clovis just wasn't right with white Nike tennis shoes, shorts, a t-shirt and a baseball cap. I still wear the roper boots from time to time, but we haven't been dancing much this year. 

The current hospitalist seeing Sue daily is Dr. Roper.  He's going to have a G.I. doctor (that's gastro-intester-something-something-ologist) see Sue about inserting a peg -- a feeding tube -- directly into Sue's stomach.  It's not a big deal as far as surgeries go. But it will allow them to remove the tube from Sue's nose and gives a little more latitude in terms of what you can grind up and insert into her stomach.  I gather that the peg insertion is preparatory to discharging Sue from the hospital.

Just sitting in bed and talking, she seems like her old self.  She's been cutting back on her pain meds.  Physically, she is barely better.  While her left arm is still pretty much dead weight, she has juuuust enough strength, with assistance, to swing her legs over the edge of the bed and, with assistance, sit up, and scooch to the edge of the bed and, with assistance, stand up.  Then, standing in front of her and holding her left hand in my right hand, with my left hand behind her back holding the safety strap they make you clip on before assisting people out of bed, I have the fleeting sensation we are timing the music to kick off an up-tempo swing dance.  But we just stand there while she stretches her calves.  She's good for a few ginger steps forward and a few ginger steps back.  While holding on to you she can rotate to the commode, which is worlds better than a bed pan.  Back two three, front two three, swing your gal. 

Well, like the John Michael Montgomery country song says, "life's a dance you learn as you go."  I call this new dance "the Hospitalist Swing."

Freeway Chicken

About a year ago I was driving to my main office, from Fresno to Madera, California.  I was headed north on Highway 99, a north-south "freeway" with two northbound lanes of heavy traffic and two southbound lanes running through the middle of the San Joaquin Valley.  The northbound and southbound lanes of this arterial highway are divided by a large dirt center median with oleander bushes running shoulder-to-shoulder down the center of the center median.  During the times of the year when the oleanders are in bloom, it's quite colorful driving up and down the Highway 99.

This part of California is farming country, and mostly what you see as you drive through here are grape vineyards, fruit orchards, and nut orchards.  A lot of the farms have your typical menagerie of farm animals, like chickens.  As I was headed north on the 99, between the Avenue 9 on ramp and the Avenue 12 off ramp, right in the middle of the center median on the east side (northbound lanes), just clucking along and pecking contendedly away at the seeds and chicken-feed bounty in the dirt, was a red-feathered chicken.

I chuckled and shook my head and thought to myself "that chicken isn't long for this world."  Well, over the past year I've seen that same chicken periodically in the same general area of the freeway median, and I've thought to myself: "Chicken, you're either really lucky, or you're smarter than I gave you credit for, or some higher power has your red-feathered back."

I headed for Madera this morning after a brief visit with Sue up in SAMC room 310.  Right after I hit the 99 North off the Avenue 9 on ramp I saw that freeway chicken again, contentedly pecking it's freeway chicken-feed, and thought about Sue.  If that dang freeway chicken can defy the odds, why can't she?

Hospital Moments

If you hang out in a busy home-town hospital for any length of time you will begin to see a lot of people you know.  Not just people who come to see your intended visitee, either.  My next door neighbor's mother was in the hospital a few doors down from Sue.  Our old neighbor's father was in last week too, but, sadly, he passed away a few days ago.  He'd been living at the same alzheimer's care facility where my mother lives.  I've seen a few of my clients here with various ailments.  And, it turns out a lot of people I know work here.  Saint Agnes Medical Center is one of the largest employers in Fresno.

You meet new people too.  I met Tu, in fact, whose wife is two doors down from Sue.  She also has cancer.  Tu and I are getting to know each other.  As I mentioned, I used to work here as a janitor back in the late 70's and early 80's.  I have yet to meet anyone on staff who was working here back then.  But the current staff are all real people, and they all have their own stories and their own lives and their own concerns and joys etc. 

The good news for me is that I've been to the hospital cafeteria so many times in the past couple of weeks they've begun to ring me up with the employee discount.  Of course, if they ask "Employee?" I tell them no, not anymore.  But I don't feel bad about taking the discount when they ring it up automatically.  For one thing, Sue is contributing about $5,000 a day to the hospital coffers, and for another thing, I am a little OCD, and I do a fair amount of work picking up, tidying up and cleaning up things around the place.

Like all hospitals, Saint Agnes has a loudspeaker system.  When I worked here we used to call the hospital operators and ask them to page fictitious names we'd made up.  It made us laugh hysterically sometimes.  One time I thought the guys were up to it again when I heard the operator page "James Bond."  Later, I met James.  He was a real guy and a pretty good guy.

A new tradition they have at Saint Agnes now is that the labor and delivery unit plays a short, music-box rendition of Lullaby and Good Night over the hospital's loud speakers every time a new baby is born here.  I'm sure I've heard it at least fifty times over the past several weeks.  Sometimes they pop them out pretty rapid-fire.  I've heard that Lullaby three or four times in a span of 30 minutes.  You see a lot of joyful people passing through the lobby, headed to the sixth floor to see the new babies.

A lot of praying goes on in hospitals.  And I sure hope God is multi-lingual, because I've heard and participated in prayers here lately in four different languages, including English, Arabic, Hmong, and Spanish.  I've heard stories from some of my Mennonite friends about how some of their Mennonite ancestors would only pray and sing hymns in low-German because that was the official language of God. It brings back vague memories of Bible stories, like the Tower of Babel and the story of the pentecost.

 I'd say that, for honest, passionate, self-motivated prayer, hospitals might be one-up on the local churches.  One of my employees, Yesenia, stopped by the other day to pray with Sue and me and one of our pastors, pastor Loren, who happened to be visiting.  We prayed around a circle holding hands, and when it came her time she prayed passionately in Spanish.

I assume that all the prayers are heard, but I don't know if all the prayers are answered.  Garth Brooks has a song in which he thanks "The Man Upstairs" for unanswered prayers.  If all prayers are answered, I'm pretty sure they're not all answered in the way the pray-ers might want.  But the whole spectrum is here, right here in this hospital.  Prayers of thanksgiving for each new life, each new loudspeaker lullaby.  Prayers of the concerns of ordinary people.  Petitions for forgiveness and absolution for what we've done that we know wasn't right.  Prayers of petition for healing and mercy for each sick and injured person.  Prayers of thanks for miracles and answered prayers.  Prayers for what we want that we know we probably won't get.  And prayers of grief and sorrow for those who pass on.

And somehow I think that's what God intended with these hospital moments of our lives.  That we step away, for a time, from the routine, temporal daily tasks that consume us, and focus for a moment on our eternal, divine creator.

Reved Up

Sue started on Revlimid (thalidomide/lenalidamide) Monday night.  She is getting the highest daily dose they make, which is 25 mg.  They dose her one time a day at night, because the stuff wears you out and makes you tired.  The high dose Dexamethasone treatments (40 mg/day, administered at 10 mg every six hours) started over the weekend.  This combination of drugs, known in the myeloma medical community as "Rev-Dex,"  is now commonly prescribed for myeloma patients who've had at least one prior course of chemotherapy with a different drug than Revlimid. The FDA has only conditionally approved the use of Revlimid for patients who've had at least one other drug therapy.

Everything now hinges on whether the Rev-Dex combination will bring the myeloma under control again, and if so, for how long.  They will be testing Sue's blood to see if the cancer goes back into remission.  Myeloma is one of the cancers for which there is not really a cure, so a typical history of treatment, or management of the disease, is drug therapy to bring the cancer into remission or partial remission, followed by an inevitable relapse, followed by more drug therapy, and so on.  The patient's prognosis for long-term survival usually depends on the amount of time they remain in remission.  According to an aritcle in Wikipedia, median survival for myeloma patients is 50-55 months.  I have seen other articles indicating a lower median survival time of approximately 3 years, but those articles may have been based on older studies.  Some patients remain in remission for years. In Sue's case, she has never remained in remission for more than a couple of months following any course of therapy, and her current symptoms are rather dramatic.  I believe that is why the doctors are not optimistic.

The Dexamethasone has brought up her energy levels and puffed her face back up.  The Revlimid will now knock her energy levels back down.  The potential side effects of Revlimid are many.  One negative side effect, birth defects, is a non-issue for Sue.  The most common and potentially most dangerous is blood clotting.  One of the questions Sue asked Dr. Wolf in our initial meeting with him was, what does death from Multiple Myeloma look like?  My recollection of his answer was that it would be a slow wasting away and that eventually some of her internal organs would stop working.  We remain hopeful but grounded.  We are investigating hospice care options.

The one drug that has the best effect on Sue these days is endorphins, and she gets them from the many visits, phone calls, cards etc. that you have been giving her. She is not reading her emails lately, so that is not the best way to communicate with her.  You all have been so kind and shown so much love that, notwithstanding her crummy circumstances, Sue's cup is running over.

Rant

Damn these doctors!  You want the truth, and you ask for it, and they give you what they've got.  And you appreciate it, and then you don't.  It's not their fault.  They're doing the best they can.  But really, what do they know about when your time is going to be up?  I've met lots of people who've told me that x number of years ago they were told by a doctor that they only had a few months left to live.

I'm telling you, I know my wife, and today I do not believe she is dying.  But I've flip-flopped on this question every other day.  In any event, if she isn't dying, she's living well; and if she is dying, no one ever has or ever will die with more grace or humor or dignity.

Because I Knew You

Last February, barely more than a year ago, Sue, Jessica,Valerie and I went to San Francisco for a weekend with our friends, Mark and Cindy, to see Wicked the Musical.  The story is that of two college-age girls coming of age, and explores our perception of what it means to be wicked or good.  It's a good story, the music is terrific, and I recommend it to you if you get the opportunity to see it.

As the story progresses, the two antagonists -- the "good" witch, Glinda, and the "wicked" witch, Elphaba -- are saying goodby to each other, and they realize they have deeply impacted each others' lives, and they sing one of the memorable signature songs of the musical, "For Good."

"Who can say if I've been changed for the better?
But, because I knew you,
Because I knew you,
I have been changed for good."

Because I Knew You  Click here and then click to play the first audio/video.

This is really the best we can hope for -- that we have impacted the lives of those we encounter and that they can say we changed them for good, and for the better.  A lot of teachers are privileged to be in this category, and for sure this is true of Sue -- as a teacher and as a friend.  She doesn't have a lot of friends for no reason.  This evening she called me and was deeply touched by her friends and teaching partners at Pinedale Elementary School, who are planning to honor Sue and her contribution to the Pinedale Elementary School community in their upcoming year book.  She wouldn't be prouder or more honored if she'd won the Nobel Peace Prize.

The Way We Were

When Sue and I were married, back in October of 1980, I was an undergraduate student at California State University Fresno.  My job, every Friday, Saturday and Sunday, and every holiday, from 3:30 to midnight, was as an "environmental engineer" -- i.e. housekeeper/janitor -- at Saint Agnes Hospital.  The job was perfect for a student because it did not interfere with going to school.  However, Sue hated my job because it left her alone every Friday, Saturday and Sunday evening, and every holiday from 3 to midnight.

They call it Saint Agnes Medical Center now, and it's more than twice as large now than it was back in the day.  Now, almost 30 years later, Sue's hell bent on getting even.  She's been over there every night from 3 to midmight for two weeks.

We met at a high Sierra Christian camp about three years before we got married.  I was on staff as a maintenance "man" and Sue was hired as a cook.  Maintenance back then meant everything from fixing things to cleaning toilets, and included washing dishes three and sometimes four times a day.  That set the tone for our marriage, as Sue has spent thirty years dirtying up the kitchen (she's a really good cook, by the way) and I have spent 30 years traipsing behind cleaning it up.  Our youngest daughter likes to say that my favorite thing to do is run the dishwasher.  Darn right.  Leave no dirty dish behind! 

We've have had involvement with the camp, Camp Keola, in some capacity for all the time we've known each other, and our Lakeview Cottages which we co-purchased with a group of friends is right next door to Camp Keola, on the southwest shore of Huntington Lake.  So Huntington Lake is, quite frankly, our favorite place in the world.  In a sense, it is our place in the world.

Each summer for as long as I can recall, Valley Childrens' Hospital runs a camp at Camp Keola for kids with cancer.  They call it Camp Sunshine Dreams.  The camp is run by the doctors, nurses and staff of Valley Childrens' Hospital, as well as involved family members and volunteers.  It is an annual week of high-energy fun and encouragement for kids in a tough situation.  Through years of peripheral involvement with Camp Sunshine Dreams I learned one unequivocal truth: cancer's tough on the body, but it doesn't kill the spirit.  If anything, it kindles the spirit. (Click the Camp Sunshine Dreams link and look at some of the slide shows if you're not convinced, or if you just want to be inspired.)

The Camp Sunshine Dreams organizers have a nice campfire tradition.  Every year on the last night of camp they have a special campfire where everyone puts down a wish or a hope or a prayer on a piece of paper, and wraps it up and puts it into the fire.  The prayers are sent heavenward with the heat and smoke and flames, and, mixed all together with each other, form a powerful elixir of life and love and hope.

Life is very real for the Sunshine Dreams kids, and so is death.  Every now and then they lose one of their kindred.  And then, by symbolism, or sometimes by ashes of the deceased, they introduce the decedent to the campfire of dreams, to the elixir of life and love and hope.  And when the fire has died down and cooled, they stir up the ashes and take home a jar of the ashes, and next year, when the campfire of hope is rekindled, they start with the ashes from the previous year. 

And that campfire of dreams is a metaphor for how we should live.  We have our hopes and our dreams and our prayers, and we offer them in community, sharing each others' hopes and dreams and prayers; and we live life to the fullest; and we don't forget our fallen fellow travelers; we take them with us and their spirit is and always will be a part of who we are.

The Bomb Revisited

Dr. Birnbaum came by this afternoon with Dr. Whitlinger.  Dr. Birnbaum is the neurologist called in by Dr. Crooks.  Dr. Whitlinger is an oncologist who works with Dr. Hacket.  They delivered the bad news.  The spinal tap shows a lot of active, malignant cancer cells.  Dr. Birnbaum says the fact that the spinal fluid contains malignant cancer cells is a sign they have spread beyond the spinal area to the whole body.  His take is that the cancer is interfering with neural transmissions, which is the cause of Sue's muscle failure, as well as the cause of Sue's pain.

The local doctors said they'd report the findings to Dr. Wolf, which apparently they did.  Dr. Wolf called my cell phone later in the afternoon and I put it on speaker and set the phone on Sue's stomach, and we had a conference call with him.  He was grave and, God bless him, he's never pulled any punches. When asked for his honest prognosis, he gave it to us straight.  He says it isn't good.  He's treated a lot of myeloma patients over the years and rarely has had one this tough.  He will prescribe massive doses of Dexamethasone (40 mg/day) and the current rave drug for myeloma, Revlimid.  However, he said Sue's cancer has proven extremely resistant and, because of her 4/14 chromosome transposition, he does not want us to be overly optimisitic.  She's had Velcade (VDD) chemo treatments last summer, a Melphalan autologous stem cell transplant in September, radiation in December, and now, barely two months later, the cancer is back and aggressively advancing.  He said her time left could be in the range of "a couple of weeks to a couple of months."  He says she will not leave the hospital to begin the Dexamethasone and Revlimid, and might not leave the hospital at all if the Revlimid does not work.

In one of my earliest blog posts from May 2009 titled "The Bomb", the one where the local oncologist first informed us that Sue had multiple myeloma, I naively stated that "cancer's cancer."  A falser tautology has never been penned.  In the past ten months we have learned that there are better and worse cancers to have, and that , in the grander scale of things, multiple myeloma is one of the bad ones.  In the past ten months we have learned that the treatments for multiple myeloma have improved greatly, and that life expectancy for myeloma patients is going up.  We have followed the blogs of lots of "survivors" of multiple myeloma who are years past their diagnosis.  We have also followed the blogs of several myeloma patients who succumbed to the cancer.  We are not giving up the fight just yet, but it's looking like Sue will pull the three year post-diagnosis survival median down.

But also in the past ten months we have acutely tuned in to another lesson not specifically tied to the cancer diagnosis.  People have asked, what's Sue's prognosis?  And both Sue and I have replied that her prognosis is the same as yours and mine: None of us know when our time is going to be up.  On the other hand, she now has a better fix on the answer to that question than you or I do, and in some ways she may be better off for it.

On the lighter side, they've given Sue a pair of "mittens" to wear while she's sleeping so that she doesn't pull out her feeding tube.  They're more like boxing gloves than mittens.  In every hospital stay she's always wanted her cell phone close at hand as a "life line" to her friends and family.  She's sleeping now, with her right hand "mitten" placed on top of her cell phone in her lap.  The mittens are tightly velcroed at the wrist and, I swear, I don't know how she could ever answer that phone or make a call or even call the nurse with the call button with those big mittens on.  Or press her PCA button for pain medication activation.  On second thought, it isn't the lighter side.  It's another sad page in a sad chapter of an otherwise really good and upbeat book.

Temporary Home

It's dangerous to listen to country music when you are emotionally on the edge.  I've spent the past week thinking my wife is dying and bottling up all the emotions that go with that.  Yesterday I was driving to work, which, since the core of my property management business is to collect rent from about 600 tenants every month, the only way I can imagine not going to work on the 5th of the month is if Sue actually did die on or around that day.  She didn't die yesterday, and last night I switched back over to the other side, and now I think she isn't going to die anytime soon.  But more about that later.  I've already told you, this blog is about me.

So I was driving to work and listening to country music, and this Carrie Underwood song comes on the radio called Temporary Home (click the link to hear the song), and the tears started to flow a bit.  The song is co-written by Carrie Underwood, Robert Laird,  and Zac Maloy, and the words go like this:

Little boy, 6 years old

A little too used to bein' alone
Another new mom and dad,another school
Another house that'll never be home
When people ask him how he likes this place
He looks up and says with a smile upon his face

"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This is just a stop, on the way to where I'm going
I'm not afraid because I know this is my
Temporary Home."

Young mom on her own
She needs a little help got nowhere to go
She's lookin' for a job, lookin' for a way out
Because a half-way house will never be a home
At night she whispers to her baby girl
Someday we'll find a place here in this world

"This is our temporary home
It's not where we belong
Windows and rooms that we're passin' through
This is just a stop, on the way to where we're going
I'm not afraid because I know this is our
Temporary Home."

Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me
I'll see you all someday
He looks up and says "I can see God's face"

"This is my temporary Home
It's not where I belong
Windows and rooms that I'm passin' through
This was just a stop,on the way To where I'm going
I'm not afraid because I know this was
My temporary home."

This is our temporary home


And if that song doesn't cause you to tear up a bit, maybe you have a heart made of stone.  But anyhow, back to Sue.  Something was different last night, and I can't quite put my finger on it.  It's almost like a corner was turned, but seeing the difference from yesterday to today might be like sitting outside and watching your grass grow. 

She's still sick and has all the symptons described in my blog of yesterday.  Plus she has the bad habit of pulling out her feeding tube, which she's done three times already.  In her defense she does it while sleeping and drugged up.  I joked to Mark W. last night (we were in the room with Sue and her sense of humor is very good -- for example she accused Mark of only stopping by to visit with me)  that Sue is trying to commit suicide by x-ray.  (You've heard of suicide by cop where the person wants the cops to shoot him?  Well, they seem to think they have to x-ray the tube every time they insert it to be sure it's in the stomach.  She's been x-rayed for the feeding tube insertion four times now.  However, I heard from Debbie F, an R.N. of old (or is she just an old R.N.?)  who said that, back in the old days, they used to insert these tubes all the time without an x-ray and they could tell it was in the right place without an x-ray by forcing air into the tube and listening.)

So maybe the hospital is just a temporary home for Sue until she comes home to the temporary home where we currently live.  But anyway, I'm temporarily going out of the predicting business.

P.S.  I have ultimate respect for police officers, and only use the term "cop" because the phrase "suicide by cop" is now in common usage.  I used to adhere to the "copper badge" theory as the probable derivation of the term "cop."  However, I just now discovered (on the internet, the ultimate purveyor of truth) that the "copper badge" theory probably is a myth.  Click here for the latest on the derivation of the term "cop."

On A Clear Day

Yesterday it rained hard in the San Joaquin Valley of California, and snowed hard in the Sierra Nevada Mountains just a few miles to the east. I left the hospital around midnight and the clouds had cleared by then, leaving a cold clear night (well, o.k., 41 F is cold for Californians). Cold clear nights after heavy rains yield stellar stellar views.

The pain medication Sue is on, Dilaudid, is powerful stuff. I've heard it's about ten times stronger than regular morphine. It clears up the pain (or does it occlude it?), but simultaneously clouds the brain. Sue had a number of halucinations last night which she called periodically to report to me. I came back down at about 3:30 a.m. to sit with her and woke up at 6 a.m. to the most gorgeous, clear view out Sue's third floor window of the snow-capped Sierra Nevadas framed by a cloudless morning-blue sky. 50 miles to the west the coastal mountains were also clearly visible.

The clouds moved back in early in the morning though, and the exceptionally clear view was reduced to a memory. If you ever wanted to paint this landscape as it should be -- at it's best -- that picture of rain-fresh cloudless clarity would be it. It isn't often, or long, that things are presented at their picture-perfect best.

Sue had a pretty good slew of guests today: Lots of friends came by. Cindy W. was the first, at 8:30 a.m. and Jenny A. was the last at a few minutes after 10 p.m.; Two of her pastors stopped by at different times; Several chaplains popped in; A hospital dog -- a labrador -- came by with it's handler; both of our daughters spent time with Sue; and several hospice workers stopped to visit and provide information. One visitor, the infamous "singing chaplain" -- i.e. Tim S. from North Fresno M.B. Church, sang Sue the hymn of her choice.

Sue's sleeping solidly now. She's tired and her throat hurts. She's got a tube stuck into her nose and down her throat into her stomach so that she can have a TPN, which is a way of dripping nutrition into people who can't take food or liquid by mouth. So her current situation is that she is more or less immobile, her throat isn't working right, she's in a lot of pain for which she is getting a lot of Dilaudid, which causes her to have an unclear mind with periodic halucinations, and she can't eat. And she has no answers to the what or why or how long.

It's rather a bleak situation when you add it all up. For sure Sue's not at her picture-perfect best. Like the clear view of the mountains this morning, that's a memory. Remarkably, though, she has a smile for every visitor, and a gladness and humor you'd expect to find only in people without any of her myriad, legitimate reasons to complain.

Happy To See You

In my life I've had several dogs, and all the dogs I've ever had have behaved the same way; when I came home, whenever that was, the dog was always happy to see me.  Nay, excited and happy to see me.  Run-to-the-door and wag-their-tail and jump-in-my-lap happy to see me.

That kind of happy to see me was true of my two daughters when they were young.  When I'd come home, if they were still up, they'd run excitedly to me yelling "Daddy's home!  Daddy's home!  Yay!" and either jump in my arms or, if my arms were full, each grab one of my legs and be dragged along.  They grew out of that, though.  Trust me, they don't get up off the couch now, much less yell "Yay!" or anything like that.

Sue hasn't always been that happy to see me.  For example, when I'd come home late from work and missed dinner, or some ill behavior like that.  There's an old and sorry joke about the difference between your wife and your dog.  If you put them both in the trunk of your car for an hour and then come back and open up the trunk, the dog will be happy to see you, and your wife will be ready to kill you.  There've been times when I'm pretty sure Sue was ready to kill me.  O.K.  Real sure.

But being really sick and being in a hospital and being at the mercy of forces beyond your control can reduce you to a more animal (or infantile, if you prefer) state.  One like the dog or the child who's happy to have any kind visitor most anytime, and even happier to have a special one.  That's the state Sue lives in these days. I call it the "Happy To See You" state.

Of course, she wears out quickly, too, and so does your welcome.  Sometimes when I wanted to be ornery, as visitors were leaving our house I would announce, "John, everyone who comes here brings joy to our house.  Some bring joy when they come, and some bring joy when they go."  In the case of visiting Sue at the hospital, you will likely bring her joy on both ends of the equation.

Another Moving Experience

Sue's been moved from isolation room 319 to room 310, which is an ordinary two person room (although currently Sue is the only tenant).  Room 310 is a straight shot to the right out of the main wing elevators, and right across from the third floor nurses' station.

The recent move is confirmation that Sue does not have T.B.  So it was, and is, safe to visit.  No masks required.  Hugs permitted.  Breakfast, lunch and dinner served via I.V.

How Do You Feel Today?

1.  Madder 'n Hell.  This morning the oncologist appeared in Sue's room at a few minutes after six and announced to Sue that he was concerned about the weakness in Sue's muscles and that he had been unaware until this morning when he spoke with Dr. Crooks that Sue was having these issues with muscle weakness.  It's probably a good thing I hadn't got here yet, because I'm still mad enough to spit.  What have we been doing here for a week?  We presented Sue to the E.R. a week ago with complaints of muscle weakness and fatigue.  Granted, Sue also had a fever of 103 F at the time.  Somehow she ended up in isolation with a red-herring diagnosis of TB, and so now it appears that for the past week "we" have not been addressing the real issue(s).

2.  Tired, and Needing A Little Focus. Sue called me at five after six this morning and said don't bother to come down to try to meet with the doctor, because he'd come and gone.  But I was up and had coffee brewing so I'm operating on five hours' sleep today.  Good for marines in training, perhaps, but I'm not genetically disposed to operating on that little sleep. 

I'd hired a second maintenance man last month and he had scheduled work out of the office for which he needed to use my truck.  So I "loaned" him my truck and "borrowed" the 2010 Ford Focus I bought last month for Yesenia to use showing and inspecting properties.  I drove the Focus to downtown Fresno to file papers at the courthouse and the Sheriff's office.  On my way back to where I'd parked, I was thinking distractedly about "things" when I noticed the empty parking stall where I thought I'd parked my truck, and I had about 30 seconds of great annoyance as I approached the empty stall thinking (in terms moderated for public consumption), "Oh this is just great! As if I don't have enough troubles, some idiot has stolen my truck."  Momentarily I regained my focus, and realized I was standing next to my Focus.

3.  Needing A Little Male Counseling.  A lot of people who know of Sue's unfortunate medical situation have an inexplicable urge to ask me how I'm doing.  I'm not the sick one, but to be sure the recent events surrounding Sue's hospital incarceration have been stressful for all involved.  For you ladies who like to ask, I'd like to explain what a good man to man "counseling" session might look like.  To set the stage, the Counselee will be the one "needing" counseling, and the Counselor will be the male friend who offers it.  We speak here in the third person because no self-respecting male of my generation and geographic upbringing would ever admit to needing or wanting counseling.

So typically, Counselee is home "sipping" beer and watching a sporting event on t.v.  Counselor rings the door bell, and Counselee answers.  The following dialogue occurs:

Counselee:  Hey, what's up?

Counselor:  Not much, how 'bout you?

Counselee:  Just watching a little basketball.  (A few seconds of uncomfortable silence pass where, following the briefest of eye contact, Counselor inspects his nails and Counselee inspects the neighborhood while deciding if he wants to invite Counselor in.)  You want to come in?

Counselor:  Sure.

Counselee:  Want a beer?

Counselor:  Sure.  (Counselor sits down and another minute of silence passes while Counselee gets the beer, opens it and gives it to Counselor).

Counselor:  Thanks.  You hear about the Jazz beating the Lakers?

Counselee:  Yeah.  That was disappointing. (Aha, true emotions spilled.  That was truly healing.)  This basketball game's a little lame.  You want to watch some UFC reruns?  (UFC cage fighting.)

Counselor:  That'd be good.

Counselee then tunes in ultimate cage fighting reruns.  Counselee and Counselor watch three fights of three rounds without speaking, quaffing two more beers each and periodically making exclamations like "ooh" and "ouch" and "ahhh ahhh ahhh" while watching angry, testosterone pumped fighters punch, kick, elbow, and knee each other in bloody, sweaty combat, trying to put each other to "sleep" (i.e. knock each other out) or submit the other guy by popping his elbow out with an arm bar to get a "tap-out submission."  This is a vey gratifying way for both Counselee and Counselor to constructively relieve stress and agression.

Counselor then stands up and says:  Well, I gotta run.

Counselee:  O.K.  See you around.

So that's what a good counseling session might look like for a man.

Not-So-Great Aspirations

Doctor Crooks just left Sue's room.  He said I could take my mask off because Sue does not have T.B.  That's a relief for about 500 people besides Sue and me.

Sue had a swallow test earlier today and completely failed it, so now the thinking is that she has been aspirating some of her food and probably has (food) aspiration pneumonia.  The problems noted in scans of the upper lobes of Sue's lungs are now believed to be food particles that have lodged in the lungs (as opposed to TB lesions), some of which are merely infected or causing toxic releases, and some of which may have become abscessed.  They are going to do a needle biopsy on the ones (or some of the ones) that appear to be abscessed tomorrow.  Fun.

So Sue is now ordered to be NPO -- Nil Per Os, meaning nothing by mouth.  No food.  Bummer.  One of the few happy spots in her day shot down like a Zero.

On the bright side, Dr. Crooks is ordering a PCA for Sue.  That's the little red button she's been wanting so badly.  (See my "If I Had A Button" blog of 2-28.)   PCA stands for Patient Control Activator.  Dilaudid on demand.  Party! Uh Huh.

Dr. Crooks (new doctor on call tonight) is concerned about the causes of the muscle weakness that has affected virtually Sue's whole body.  Finally someone on the medical staff noticed that she can't walk, can't get up, can't lift her left arm etc. and is concerned about it.  And apparently what caused them to take notice was that she failed a swallow test.  And it was the R.N. on duty yesterday who suggested they do a swallow test because she saw Sue gag when trying to swallow a pill.  But Dr. Crooks is on it.  He's going to review Sue's charts, review her MRI, and get a neurologist into the brain-trust mix tomorrow.

It's after 11 pm and I want to be back here (at the hospital) by 6 am to try to catch the oncologist when he makes his rounds tomorrow.  They say he comes early, around 6:30.  Ah yes, well the early bird gets the worm, so they say.

Flower Power

On my way out to my truck the other rainy day, headed for the hospital, I noticed a single yellow and red tulip pushing out of the ground by the white picket fence in our front yard.  The tulip was stunted and its leaves were bug-eaten and abused by our gardener's weed-eater, but it was colorful and bright and it brightened my day and reminded me of a story told to a group of artists at Huntington Lake by local artist, Margaret Hudson.

Margaret told of how, following the suicide death of one of her sons, she had spent a good deal of time fighting depression.  She'd taken a long walk in the woods one late-winter day, and the woods had been damp and the trees had not yet emerged out of winter hybernation, and as she was coming out of the woods she encountered a single flower pushing up out of the humus of a dead and decaying tree.  That single flower, she said, was a revelation. Margaret paints a lot of flowers.

Our across the street neighbors (we live in a cul-de-sac) Linda and Terry, came over this afternoon and weeded Sue's flower beds out front.  Linda is a flower person, too, and she and Sue both have an affinity for sweet peas.  Linda has been surreptitiously leaving flowers near our front door in singles and bunches and pots for Sue's and our enjoyment.  Here is a picture of a single camelia Linda left by our clay statue of Saint Francis of Asisi.  The Saint Francis sculture was made by Margaret Hudson's Earth Arts Studio.

Yesterday colleagues of mine from Kings View Corporation sent a beautiful bouquet of flowers to Sue.  We have both been getting a tremendous amount of enjoyment from them. 

Flower power has a nice alliteration.  But there really is a certain power in a flower.  Flowers are like a song you can't resist singing.  A flower, or a bouquet of flowers, is like a beautiful, smiling face you can't resist smiling back at. 

Not TB, Grandma G

A couple of days ago Grandma G posted this comment question:

"TB, or not TB?  That is the question."

According to one of the doctors who saw Sue yesterday, the first phlegm test they ran came back negative for TB.  They have to get two more negatives before they move Sue out of the isolation room.  But for now, it's looking like it's not TB, Grandma G.

I'd like to meet you someday, Grandma G.  You crack me up.  You also sound like a really nice lady.