Too many things….

…….too little time

Been too long since the last post and a lot has happened.  Between adjusting meds to find a balance and sleeping more than waking, I’ve gotten way behind on updates, so here’s some summaries to catch you up…..

Many people come into your lives, some for a short time,3-4 years; some for a long time, 50 years or more.

Bev and Steve, owners of Redbery bookstore in Cable WI., are the first kind: generous, friendly,always a smile and are involved in the community……. they are retiring and they will be missed.  They have left their mark on Cable.

Along with Brian Cahill, the former head of Catholic Charities SF who has left his mark on the SF Catholic Community, by gently and quietly taking apart the misguided words of the Archbishop there, Salvatore Cordileone, using wit, logic, and his own words to hoist him on his own petard!  Along with his dedicated ministry to police forces around the bay area to hammer home the hard story of police suicide and how to prevent it.  He has also become a close friend through our discussions about Fortunate Families in particular and the others in general.  He is a kind, generous, and faith filled man whom I cherish as a friend, as short a time as it has been.

People from around world – friends from cruise ships, friends among sheep herders in Mongolia, friends from the groups you’ve worked with in New York, Germany, Mississippi, Colorado Springs, Bangkok, LA and the Bay area …….  all have unique lives to share but the most important ones are your neighbors.  You share a property line, but unfortunately in a lot of places ( CA!) you also share a fence.  I visited a friend in MA a number of years a go and standing in their back yard was an experience – their, and their neighbors, back yards rolled down into the forest and not a stick of wood, strand of wire or hedge between houses could be seen.  Heavenly – let’s start a national petition to make fences illegal!  Less fences, more friends.

Then there are those friends who grow like soft, pastel colored flowers in the garden, who sneak up on you and suddenly are there, a friend for life.

Not to mention family.   A daughter comes home for a year to help out in this end of life crisis, which turns out not to be an ‘end of life’ but getting close to end of life, and a new family bond is created.  And then a son who appears three days after the final prognosis who has been here a cumulative set of friendship building days that exceed the sum of days we’ve been able to see him in the last 29 years.   A friendship built on love, trust, and a bit of head knocking on each side to grow a shared bond of living and dying.

People

That was the last word that Michael typed. He thought he would get back and finish it later. I’ve wondered what he was going to write next. The week before he died he had just come home from a trip to Las Vegas where he said goodbye to an old friend. Michael’s death on May 21st came as a surprise to many because when asked how he was he always told people he was fine “except for my legs. They are just shot”. Assuming that was true many thought he had more time to be with us. He rarely complained about how he was feeling except to say, “I hate this”. “This” was cancer.

We had a grand celebration of his life at the Vigil on May 29th and at the funeral on the 30th. It was a joyous celebration where people spoke of their experience of knowing him. There was also great sadness because those of us that love him will miss his presence in our lives. A good friend of ours called his spirit and goodness as “his Michael-ness”. I love that description. After being married to him for over 52 years I have many wonderful memories of our life together and of how his Michael-ness changed my life.

One of our daughters heard the following Franciscan Blessing at her church and when I read it I felt that it was the perfect ending for Michael’s blog because it speaks of how he lived his life.

May God bless you with discomfort at easy answers, half truths, and superficial relationships, so that you may live deep within your heart. Amen

May God bless you with anger at injustice, oppression, and exploitation of people, so that you may work for justice, freedom and peace. Amen.

May God bless you with tears to shed for those who suffer from pain, rejection, starvation and war, so that you may reach out your hand to comfort them and to turn their pain into joy. Amen.

May God bless you with enough foolishness to believe that you can make a difference in this world, so that you can do what others claim cannot be done.

To be continued…..

Last month I went to Immaculate Conception Academy in San Francisco, where I had been on the Board of Directors for 10 years, to say goodbye to dear friends there.  That was hard, I think even more so for some of the folks there.

If you want to see a success story take a look at their history of converting to a Christo Rey school where the entry requirements are a family income of very low $$ rather than the SF folks who were there before from very well to do families.

The program is a work/study program and the young women go to work at a company one day a week plus keeping up with their study program.  The first full Christo Rey class had 100% acceptance to colleges!  And the school has now gotten 100% of the jobs to keep the women fully employed.  Many spend the summer working where they had during the school year and are paid for their time.  A remarkable success story.

As I was leaving and saying ‘goodbye’ to folks, on of the former presidents of the BOD came up to me and said: “Michael, let’s not say goodbye, but “To Be Continued””.  I thought that was a very astute observation.   Thanks, Steve.

Goodbye
All your life you’ve waited for love to
Come and stay
And now that I have found you, you must
Not slip away
I know it’s hard believin’ the words you’ve
Heard before
But darlin’ you must trust them just once
More, ’cause baby
Goodbye doesn’t mean forever
Let me tell you goodbye doesn’t mean
We’ll never be together again
If you wake up and I’m not there, I won’t
Be long away
‘Cause the things you do my Goodbye Girl
Will bring me back to you.                                  

Songwriters: GATES, DAVID A.
Goodbye Girl lyrics © Warner/Chappell Music, Inc., Universal Music Publishing Group


I have become

the classic definition of ‘the old man’.   Head bent, shuffling feet, shortness of breath and a gaunt face.  My arms are just skin and bones, but I’m cold all the time so I’m wearing flannel shirts even when it’s in the 70’s.  My legs don’t look like skeletons due to the water retention but under that fluid stretched skin is the same skeletal structure.  No muscle tone – no muscle at all in fact.  A trip up the stairs to the second floor is usually a chore.  Last Thursday I played golf, using a cart as I have been for a couple of years, staying as close to my ball as possible, but still the little walking I did for the four hour outing had me so wiped out I could barely stand when I got home.  My legs from the knee to the floor felt like they were ready to fall off.   And I don’t seem to be recovering to a ‘normal’ existence anymore after these setbacks.

A couple of weeks ago we decided to go ahead and sign up for Hospice rather than take a chance on having something catastrophic happen and then have to scramble to connect with them for support.  Yesterday the visiting nurse, who will come twice a week to check on me, pretty much said this is a “normal” progression for my disease, and it won’t get better; in fact, obviously, other things will begin to start ‘failing’.

My medicine list is now a pharmacist’s dream; pills, liquids, creams… they take up a shelf in the kitchen and half of one in the fridge.  One is morphine liquid and that is  a hard one to accept as my ‘institutional’ conditioning from my generation rings alarm bells when that word is spoken.  But, my volunteer care giver, Brennan, who came from Vietnam to help until this is over, and I, had a great back and forth discussion about what I take and need to take, when and why.  I value his knowledge and experience and so I acceded to the need for the morphine when things get painful enough to justify it.  Quantities are very small at first so the unconscious fear of addition has been logically overcome.  When I have enough need for an ‘addictive’ amount I’ll be glad to have it.   Though by then I believe Hospice may have something else in mind.  We haven’t discussed that so far.

“Older Chests”

Older chests reveal themselves
Like a crack in a wall
Starting small, and grow in time
And we always seem to need the help
Of someone else
To mend that shelf
Too many books
Read me your favourite line

Papa went to other lands
And he found someone who understands
The ticking, and the western man’s need to cry
He came back the other day, you know
Some things in life may change
And some things
They stay the same

Like time, there’s always time
On my mind
So pass me by, I’ll be fine
Just give me time

Older gents sit on the fence
With their cap in hand
Looking grand
They watch their city change
Children scream, or so it seems,
Louder than before
Out of doors, and into stores with bigger names
Mama tried to wash their faces
But these kids they lost their graces
And daddy lost at the races too many times

She broke down the other day, yeah you know
Some things in life may change
But some things they stay the same

Like time, there’s always time
On my mind
So pass me by, I’ll be fine
Just give me time
Time, there’s always time
On my mind
Pass me by, I’ll be fine
Just give me time                                           Damien Rice

                                                  

Me in a book update

“Dear friends, In case you didn’t get a message about the update to my last post… I mis-spoke in that blog post about what character I will be in Mark Pryor’s next mystery.  He is going to put me in it but told me he is still developing the plot line and he’s not sure yet of my role.  So you will have to wait till it comes out to see for yourselves.  Something to look forward to!”

Mark my words……

“Dear friends, I mis-spoke in this blog post about what character I will be in Mark Pryor’s next mystery.  He is going to put me in it but told me he is still developing the plot line and he’s not sure yet of my role.  So you will have to wait till it comes out to see for yourselves.  Something to look forward to!”

A while back I discovered a new writer of Mystery books, Mark Pryor.  HIs first book was “The Bookseller” and it was one of those kind you can’t put down and you find yourself finishing it at 1:00 am.  His subsequent books, “The Crypt Thief”, “The Blood Promise”, and “The Button Man”, were as engrossing as the first.

He has a Face Book page which I ‘liked’ and followed.  About a month ago he announced his next book “The Reluctant Matador” would be published this June.  My reaction was “Oh crap… I won’t be around to read that one”.  Our daughter Sarah is an assistant manager at a small (very small !) independent book store in Cable (small town; very small !), Wisconsin and she said that books usually have a ‘pre-publication’ copy that is not for sale, that book stores get to preview and be able to tell people about.

I had thought of contacting Mark and asking if I could get one of these, but Sarah beat me to it.  She contacted Mark, told him my story and asked if he could send me a copy.  He not only said yes, but contacted his publisher immediately to get one.  He contacted me and told me he was sending one, although it was still in the process of final minor edits and corrections.  Bottom line, I have the book, Mark and I have connected thru FB and are ‘friends’ in the true meaning of the word.

If  you are interested in getting his books, and you don’t have a favorite Indie book store you support, I recommend where Sarah works: Redbery Books.

FB: https://www.facebook.com/pages/Redbery-Books/51474867685

Web page: http://www.redberybooks.com/  Free shipping with your order.

BUT…. the best part of all is this….  Mark has offered to make me a character in his next book!  No matter how minor a mention it is, just having your name in a book is a thrill and an honor.  So you’ll have to check to see when the book comes out.

Meantime, buy his first one “The Bookseller” and become a fan.  By the way, his books are paperback so you don’t have to pay $25-$30 for a hardback to read them!

I’ve finished “The Matador”…and long before anyone else can!  But a strange thing happened – when I was about 40 pages from the end, somehow I didn’t want to finish the journey — but I did.  Same as with life……

“The habit of reading is the only enjoyment I know in which there is no alloy. It lasts when all other pleasures fade. It will be there to support you when all other resources are gone. It will be present to you when the energies of your body have fallen away from you. It will last you until your death. It will make your hours pleasant to you as long as you live.” – Anthony Trollope

 

 

Good weekend; bad week…

Last weekend was a great one.  All the kids were here along with granddaughter Rali who was celebrating her 12th birthday.  Saturday we went to a Japanese Restaurant (Rali’s choice) where we celebrated not only her birthday, but during lunch Heather and her girlfriend Stacey announced that they will be getting married next year! ! Great news, Fabulous news… barring a miracle I won’t be here but it still made my day – hell, it made my year!   Sunday we went to SF China town for a 3 hour ‘food’ tour which was excellent.  Delicious food in off the beaten path, hole in the wall places, along with a lot of SF and Chinatown history thrown in.  Rained at the beginning but let up and the sun came out to finish the tour.

Then….. Monday a couple of hours before Heather and Stacey had to leave to catch a plane back to Colorado, I got sick and had to go to the ER… bleeding stomach lining due to the damaged liver. Verified by my GI doctor with an endoscopy at 7pm.  Poor guy lost an evening with his family.   Two overnights in the IC ward with a slow drip of Vitamin K to heal the lining and then up to a regular room, originally to stay one more night, but got released by my GP to go home after a bag of Iron since my blood count of it was low.  Was wiped out on Thursday, and felt better Friday/Saturday; actually got out of the house and went out to eat on Friday night.  Mexican, but… just beans and rice, no hot stuff!.

Then Valentines Day was shot as we didn’t make dinner reservations due to the ‘fun’ I was having during the week, and we ate at home…. at which point I got an upset stomach again and lost my dinner – but no blood this time thank God.  Medicine for pain worked and I slept like a log all night and feel much better today – thus this blog before anything else happens.

On that Monday all I could think of was that it was too soon to be starting…. but I guess this kind of stuff will plague me to the end.  Biggest impact at the moment is that we cannot now plan any long trips.  Would be terrible to have something like this happen while we were 4-5 hours away from home; by plane or car.  Acceptance comes in many forms.

Chuggin’ Along

Some days you got it all together
You swear you have it figured out
Other days you’re stumbling and a wondering
What the hell it’s all about
Life’s kind of funny like that
Sometimes you’re the dog sometimes you’re the cat
All you can do is just keep going
And thank God for what you have

Chorus
Keep chuggin’ along
Keep singing your song
Put the plow in the ground till the daylights gone
When you look back over your shoulder
At everything you’ve done
Put the good times in your pocket
Let the bad ones make you strong
Keep chuggin’ along

Sometimes you get a bill in the mail
You don’t know how you’re gonna pay
Then your baby wraps her arms around you
And makes it all go away
Life’s kinda funny like that
Sometimes you’re the train sometimes you’re the track
And when that sun goes down
And there ain’t no goin’ back

Keep chuggin’ along
Yea keep chuggin’ along                    written by Luke Bryan, Rodney Clawson.

Angels and the Inevitable…

Angels come in many forms and guises;  nurses, prisoners, firemen, small children, teachers, homeless persons, bus drivers, your neighbor, undocumented migrants, and caregivers, among others.

Mardelle is now burdened with being my caregiver.  I am blessed; as I have been with all she has done over the last 52+ years.  The worst part of being a caregiver is having to just watch, suffer, and not be able to take away the pain, the fear, the cold, the isolation.  And having to patiently, uncomplainingly wait until the end, offering support, prayers, tears, a healing touch, and love but knowing at some point the victim will leave.  I’m convinced it must be harder than becoming the diminishing spirit that requires someone to just standby, unable to make whatever is causing this to go away.

On top of everything else, two weekends ago I had a tooth that got infected (naturally the weekend) and we had to go to Urgent Care on Sunday night to get some antibiotics.   The wait was 1 1/2 hours, and Mardelle was feeling rotten because she was coming down with something at the same time.  After that we had to go to a pharmacy to get the Rx.  The only one open on Sunday night was 10 miles away.  So I stood in line while she sat and waited, again, for about 1/2 hour till I could turn in the Rx .  At which point the pharmacist informed me that it would take another hour to fill it…. really?  Just one more thing to add to the caregiver job description.

The Inevitable has arrived…

They did a PET scan Wednesday and we saw Dr. Raj, my Oncologist yesterday afternoon.  No good news.  The cancer has spread to the peritoneum and existing spots have increased in size and the tumors in the liver have grown.  

She said she has no chemo options at this point.  The choice is to keep pumping chemicals into me with the resultant reduction in quality of life but not much of a chance for slowing the beast down, much less stopping it; or just decide to go with what time I have left and enjoy it as much as we can.  At best I have 3-6 months, but 3-4 is more likely given how aggressive it’s become in the last month.  They will connect us with Hospice in the next few days so we can begin to plan what will happen and how they will help.  I refuse to die in a sterile, colorless concrete cave of a hospital room.

We knew this day would come, but it’s still a shock no matter when it happens.  I wish it was better news.  If there is a silver lining it’s that at least it wasn’t a fatal heart attack leaving everyone scrambling to put all the required postmortem pieces together.

“Every time we make the decision to love someone, we open ourselves to great suffering, because those we most love cause us not only great joy but also great pain. The greatest pain comes from leaving. When the child leaves home, when the husband or wife leaves for a long period of time or for good, when the beloved friend departs to another country or dies … the pain of the leaving can tear us apart.
Still, if we want to avoid the suffering of leaving, we will never experience the joy of loving. And love is stronger than fear, life stronger than death, hope stronger than despair. We have to trust that the risk of loving is always worth taking.”
Henri J.M. Nouwen