Five Years

You left us five years ago today. I cannot believe it's been five years. Then again, it seems like it's been forever.  I am spending the afternoon at your grave as I have done before. Your favorite music is playing and I am simply letting the emotions flow. My hankie is soaked and it's not yet time to go. 

Tim and Charli get to put up with me a couple times a year. Charli is turning into a wonderful young lady!  She is 11 now and a whole bunch of fun when we are together. 

Daniel and Kamie are doing well in Pennsylvania. Dan is taking classes and Kamie is leading them in a Grandma Alberta style life. I routinely get updates about the gardening, canning and cooking. Alberta would be proud, I think. 

Scott is still contributing in Hollywood as a matte painting supervisor. The little bit I hear now and then tells me the girls are doing just fine. 

My kids are also doing just fine. Erika has moved to Minnesota and is loving her work situation. Chris just took a new job with a software startup--maybe his 9th company? Sarah had an emergency appendectomy a couple of weeks ago and she is fine. Casey is working at the kids school. Danny is turning into a fine young man. 

Tom and Reenie are holding down the fort in Duluth. Haven't seen them in a bit but hope to visit next month when we're back in Minnesota. 

And yes, Stephanie and I are planning our wedding for October in St Paul. Stephanie is the sister of Susan Cathey married to Tom Cathey who is her brother-in-law. How is that for a small world?  

I love you, Always and All Ways. 

Missing Posts?

As I look at this blog, I realize I have been posting on FaceBook for Mary's birthday, anniversaries, holidays, etc.  

I promise to duplicate any FB postings to this blog as they happen.  And, I may be able to add the postings but they will have the wrong dates, obviously.  

Mary's 67th Birthday

Happy Birthday Mary, 

You are 67 this year. I've missed celebrating your birthday with you. I've missed you, period! 
You left us four years ago next month. I know you didn't want to leave us, you fought like hell to stay with us. In particular, you wanted to spend time with Maddie, Emma and Charli. Danny and Sarah too. Nothing brought you more joy than our grandchildren. 

And a nanosecond behind the grandkids were Tim, Lara, Daniel, Chris and Erika. And all the spouses, Scott, Kamie and Casey.

Last week I woke up out of a dream and needed, really needed, to tell you about something in my life. It took me a few minutes to remember you are not here. And I was shocked to remember, again, you are gone. You wrote five years ago when you were diagnosed that all I needed to do was sit quietly and you would be there with me. It is true, very true.

Travel is still very much part of my life. You would announce you had itchy feet and we'd plan our next trip. It hasn't changed much but the destinations are not as exotic. Since your last birthday, there's been one Farmers Reunion in Augusta Georgia to celebrate Richard Tichich's first showing of his photography. I did visit relatives: your kids and mine, cousins and siblings this past year. No Hawaii for the first time in forever!

Mary, I hope the Rainbow Bridge allowed our pets to be with you. You loved dogs so much, especially Shawna...Wolfie...Beau...Rocky...Sweep. I do hope they are with you!

Please know I still love you, All Ways and Always. You will never be forgotten.

I love you, 

Happy Birthday, Mary

Today, March 7, would have been Mary's 64th birthday.

I found this quote and it resonates with me.

"Death leaves a heartache no one can heal, love leaves a memory no one can steal" from an Irish gravestone.

Mary, I love you, All Ways and Always.

Patrick

Mary changed our lives

The celebration was a success. Good food, good friends, lots of stories and laughter. I think it was exactly what Mary was hoping to have. Thanks to Pat Lawson for these pictures.



I heard a lot of stories and memories and comments--thanks to all of you who gave me those precious moments recalling Mary and the great person she was.

Elaine is a Habitat homeowner to be as a result of the work Mary did on her last family selection process. I think I have reported previously that Mary finished her last family selection on Thursday, March 19, 2009. We flew to Denver to see my grandkiddies and on Sunday the 22nd of March in the wee hours of the morning, Mary's symptoms presented that lead to the whole journey with cholangiocarcinoma.Elaine  had this to say to me and I thank her for this from the bottom of my heart.

"Mary changed our lives. Truly, she changed our lives."

Remembrance Photos--The Early Years & The Later Years

Clicking on the photos will take you to the picasa album site where you can view in larger size and take more time to read the captions.

May 8 for Mary's Celebration Party

The Celebration is open house style, starting at 5PM and running till we are done.  Bring your kids if you like and anyone else who wants to celebrate Mary's life. 

Call me (click to the right) or send an email to let me know if you are coming. I need to make sure I have enough food, drink and chairs for everyone. 

I will be sending electronic invites also. If you don't get one, its only because we have multiple address books and I simply didn't catch your email address. 

Home again

My flight arrived slightly late on Tuesday evening but it wasn't too bad.  MaryR had agreed to pick me up and we've been doing airport duty for each other for decades.  We were both starving so we headed to Double D's sports bar in Los Gatos and ate a very nice pasta and salad dinner.

MaryR dropped me off at the house--it was really, really empty.  The dogs were still boarding at the vets so it was just me and the silence. I fixed that quickly by loading my iPod into one of our speaker sets and playing the songs Mary and I both loved.  In Minnesota while driving, it was pretty much Van Morrison that I played, in particular, "Brown Eyed Girl", "Have I told you lately (that I love you)", "Moondance", "Whenever God shines his light", and our wedding march, "Bright Side of the Road." (Click here for lyrics).

I have since switched to Eric Clapton. Mary fell in love with his work when he was with Cream performing "Sunshine of Your Love."  Over time, his music has meant a lot and we played "Alberta" to begin and "Tears in Heaven" to end Mary's burial last Saturday.

Wednesday was busy. I had an appointment with the lawyer to discuss what needed to be done for the trusts.  Made a quick run to Costco to return a bluetooth earpiece that hurt when I put it into my ear.  Picked up my new glasses--I don't need them except when I want exceptionally sharp distance vision--and dropped off two sets of frames to be configured into new sunglasses and golf glasses.  Golf glasses?  Yup, no bifocal or progressive or whatever. All that does is distort the green while putting. Golf glasses are distance vision only. 

Picked up Shawna and Idjit Dawgs and they seemed no worse for wear having spent a week at the vet's kennel.  Finally, met MaryR at my car dealer as I had to drop off my Jaguar because of a not nice noise the engine was making while cold.  All that took into the evening hours so fixed myself a simple dinner and plopped to watch TV.  TiVo had recorded one of my favorites, Top Gear on BBC (click on the name).  Although Mary wouldn't watch the show if I wasn't there, she enjoyed the antics of these three British blokes and their dumb stunts with cars when I did watch it. 

Today I start the planning in earnest for the May 8 celebration.  I will be using evite to send invitations so I can plan food and drink quantities.  If you don't get an invitation by end of day tomorrow, let me know and I'll be sure to get it to you.  If there are people you think should be there, please let them know how to reach me so we can add them to the guest list! 

A Special Time

As I sit here in my hotel room in St. Paul, I am recalling the events of these last few days in my mind's eye.

The sadness as I arrived at the airport--without Mary for the first time in almost 20 years.  We would always have a comment or two about whatever rental car Avis prepared for me.As a frequent traveler with Avis, they upgrade me regularly from the car I reserve so we've had no charge upgrades to Mercedes S-class in Germany and convertibles in Hawaii. Part of our arrival ritual in this airport was wondering what they would give us this time and then reacting to whatever it is we got.   The discussion ranged over color, model and most of all the implication--she always hated Lincoln Town cars and Cadillacs for what they implied, not that the cars were bad.

My sister lives here and my brother arrived from Phoenix the same day I did. On the first day, I met with my cousin Mary Jo to prepare the house for the lunch and reception on Saturday. MaryJo has been a saint in helping me make everything work this weekend.  Thank you!  That night, I had dinner with my sister, my brother, cousin MaryJo and her husband, Denny.

Friday was more preparation work and I really don't remember a lot of details.  It was a whirlwind but we got it all done.  Meetings with the funeral director, ordering food for Saturday, picking up portraits of Mary I had ordered from California and then finding frames to fit--cheaper than sending the pictures from California.  Reenie and her gang arrived from Duluth and checked into their hotel.  Daniel, Kamie, Jake and Teresa arrived from east and west and joined them there.

Reenie had channeled Alberta (Mary and her mom) and prepared what I affectionally call the "Alberta Box."  Last year, Mary and I did a road trip to Portland. Mary was absolutely fixated on having a giant cooler with enough food and drink for a two week trek across the Serengeti. Uh, Mary, we are driving a few hundred miles per day and there are stores and restaurants and...  It didn't matter, Alberta had programmed her with the need to prepare and haul the "Albert Box" on a road trip.  Proof of Alberta's programming was seeing the spread Reenie had brought from Duluth. After all, its a two hour road trip so three Alberta Boxes had been prepared!  And, thanks to Reenie for her help all this time.

Saturday morning we had the burial at the Quirk family plot with only family present. Mary's son Daniel with Kamie came in from Pennsylvania. Mary's sister Reenie and her husband, sons and partners arrived mostly from Duluth area but Jake and Teresa came in from Portland. My sister, Sister Maureen and brother Dan from Arizona were there plus the Lamey cousins:  Kathy along with Dr John, Fran and their son Tom.  On my Mom's side were the Connolly cousins, John, MaryJo and MaryJo's family including the grandson,15 month old Paxton.

It was a short burial service as Mary had described in some detail what she wanted. I had made a CD with some music that Mary requested although she said, "You know what I like, so play those songs."  Daniel, her son, carried the cremated remains to the grave site.  Brother in law Tom had brought the boom box so we played several of Mary's favorite songs.  The funeral director led us all a short, sweet service and we ended the service by placing flowers on the wooden box that held her cremated remains while we played Eric Clapton's version of "Tears in Heaven."

After a lunch at the reception house, courtesy of Cecil's Deli, we moved on to the Funeral home.  I was so taken by all the friends and family who made the effort to be there.  Bernie and Sandy flew in from Washington that morning, the airlines lost their luggage for a few hours and when it finally arrived, they were forced to change in the restroom at the airport in order to make the Remembrance on time.

The service we held was virtually the same as the one in California last week. I found the big difference was that the California service, except for family members, was attended by friends of the past 20 years.  In St. Paul, friends and family attended who knew Mary as a young girl as well as an adult. As one of her cousin's said, "I'll get you some scanned images of Mary attending Christmas and summer vacations with us when we were very young."  I am looking forward to those pictures.

Many attended from our (Mary and I) first round of dating in 1965-1968 plus several of Mary's college friends from her "farm" experience.  In fact, Tom O'C read a series of email from the "Farmers" reflecting on Mary's life both in college and during the last six years since Mary reconnected with the group. Thanks to Tom for delivering the wonderful stories and thanks to the Farmers who could not attend but provided such warmth and love about Mary.

We held the reception and told more stories of course.  Later that night, I hosted 25 friends and family at Pazzaluna in downtown St. Paul.  The food was great and the companionship was wonderful.  The only thing I fear is that my best buddy since 3rd grade was seen telling stories to Mary's son Daniel and Reenie's boys.  I have a feeling they learned some things I would not have wanted them to know!

I met Reenie and family at the Como Conservatory just before they headed north.  Mary and Reenie were often taken to the conservatory when growing up.  I lived just outside the gates of Como Park so I spent hours and hours in the conservatory because kids could just get on their bike and disappear all day in those days. My cousin's Dr. John and Fran hosted a serial tag team of cousins all Sunday afternoon. Fran prepared a wonderful lunch for the early arrivals and then managed to whip up food for those who came later. Thank you Fran!

My brother Dan and Jake & Teresa flew out at 9PM so Daniel, Kamie and I had dinner together at their hotel.  They left this morning on a 9AM flight.  This afternoon, I meet my cousin MaryJo to finish the clean up of the house. Tonight is dinner with my former co-workers, Stacey and Bill plus Stacey's Mom. Stacey was my executive assistant in 1990 and following when Mary and I reconnected.  I am sure there will be some great stories tonight!

Thanks to everyone for the warmth, love and concern this weekend. It was a truly special time.  I realize I have been so busy that I will not hit the wall for a while.  And, friends that have lost a spouse tell me that the wall is pretty damned hard and takes a long time to recover.

Mary was my soul mate.  I don't think I could every describe in words what we have & had together.  I listened to what friends and family have said these last several weeks and there is a truth. We found our life's joy in our love for each other. I sincerely wish for all of you that you can have that same wonderful experience even if it is for a very short time--and as Daniel said last night, he feels cheated because Mary's death was far, far too soon.

A New Blog Element

Directly above this first posting you will find a string of words (Home, The Last Days, Donations, Remembrances).  These are actually tabs that point to pages that are fixed and will not scroll down like the typical blog page. I hope you find this information helpful in many ways.

The St Paul Remembrance is set

Saturday, 1:30PM on April 24, 2010 at O'Halloran and Murphy, South Snelling Avenue, St Paul.

Click here for the obituary from the St. Paul Pioneer Press. 

The Los Gatos Remembrance

iPad users click here.

It was a wonderful Remembrance.  We saw pictures going back to 1947, we laughed, we prayed, we told stories and most of all, we celebrated Mary's life.

Her oldest son, Tim, and her daughter, Lara, were both here. Lara's family was with her so Scott and granddaughters Madelyn and Emma were in attendance.

MaryR, Michele, and Terry had prepared eulogies at my request.  Pastor Jim Morrison invited more comments and we heard from a number of Mary's friends. It was wonderful to hear their memories and perspective on Mary and it warmed my heart to know how much she meant to so many people.  Mary's son-in-law Scott was the last to speak and he touched me with his words in a very special way. 

We sang Amazing Grace as a group, Pastor Jim read from the scriptures, he also read the very touching description that Rabbi Lori had written about the family saying goodbye at the hospital and then Madelyn and Emma took the microphone and led us all in the Lord's Prayer. 

I had provided a series of pictures and Darling-Fisher converted them into two short videos that we used as a preface and a postscript to the Remembrance. . I'll post those videos next week after the Remembrance in St. Paul. 

The pictures are of the flowers received from friends. Thank you.

Mary was cremated today

Mary's cremation was exactly one week after she died.  (Mary always hated euphemisms like 'passed on' or 'crossed over'. She wished people were more direct and in honoring her wishes, I am using her preferred vocabulary.) 

She was wearing the red thermal nightgown she spent so many hours in this last year plus her blue fuzzy sweater that was a gift from Habitat from Humanity.  We knew when she was hurting because she wore "blue fuzzy" on bad days.  She carried a book (One for the Money by Janet Evanovich), tea (herb, of course), a dog toy (a skunk loved by Wolfie) and a penguin (made of fabric).

I did get to see her before they zipped up the liner and then I wrote the following on the outside of her crematorium container:

Mary, my love

Let your itchy feet carry you 

to new and wonderful places,

Let your spirit hold 

and keep our love,

All Ways and 

Always,

Pat

Cary and Mauro were very gentle with her and very professional.  They let me have a moment of silence and waited until I was ready.

They asked if I wanted to start the crematorium.  I agreed and they showed me what to do.   I then left because there was no reason to stay.  The system runs automatically for about 3 hours and then goes into an overnight cooling mode.  We started the crematorium at 2:45PM, Mary's last breath was at 4:40PM last Thursday. 

One week has passed and there are times I still expect her to walk in the door.   

Pat

Donations

Mary had three favorites.  All three organizations are prepared to accept donations in Mary's name.  Click on the name to take you to their link. 

1. Silicon Valley Habitat for Humanity
2. American Conservatory Theater of San Francisco
3. College of St. Benedict

Mary's Remembrance and Celebration

We will hold a Remembrance of Mary on Saturday, April 17 1:30PM, Darling Fisher Funeral Home on North Santa Cruz avenue in Los Gatos followed by a reception at our home. You are more than welcome to attend.

We will hold a second Remembrance of Mary on Saturday, April 24 in the early afternoon at O'Halloran and Murphy, South Snelling Avenue, St. Paul Minnesota. You are more than welcome to attend the remembrance.  A reception will be held immediately following the Remembrance.  

I will host a Celebration of Mary's life according to her wishes on Saturday May 8 at our home in Los Gatos. Mary specifically asked the Celebration be held in 30 days so 30 days it is! So save the date, please come, party, tell Mary stories and laugh! It is what she wanted us to do!  Let me know if you can make it so I can be sure to have enough food and refreshments! 

Pictures from Mary's Friends & Family

As most of you know,  I love to take pictures.  And I have many of Mary.  These are pictures not taken by me and uploaded by her F&F.  If you have a snapshot or two and wish to add them, please let me know and I will send you an invite to this website so you can add yours. 

So far, Scott, Marigene, JoKi and David have added photos.
iPad users click here. 

Plans are coming together

We will have a Mary Remembrance at Darling-Fisher Funeral Home in Los Gatos on Saturday, April 17 in the early afternoon.  

We will also have a Mary Remembrance at O'Halloran and Murphy in St. Paul on Saturday April 24 in the early afternoon.  Internment will be at Resurrection Cemetery where Mary's ashes will be buried with her Mother, Alberta, her Father, Jack, and her  younger sister, Jean Ann, who died at 9 months.   

Both Remembrances are open to all her family & friends who knew her during her very short 63 year life. 

Mary wanted me to host a "Celebration of Mary" after her death.  I have decided on Saturday May 8 at our house in Los Gatos--so pencil it in.  Let me know if you want to attend or can attend and I will add your email to the invitee list.  This will be a true celebration so if you knew Mary in any of her incarnations such as Habitat Silicon Valley or CAMLT or TCAA or Book Club or Los Gatos Farmers' Market or her life in Phoenix or her life in St. Paul or her life here in Silicon Valley, please feel free to ask for an invitation!  I will gladly grant them to all! It will truly be a time to celebrate! 

Mary will be cremated next week prior to the Remembrance on the 17th and this is in accordance with her wishes.  

Finally, I have created a picasa site where we can all upload pictures of Mary.  Please feel free to upload and if you don't get the upload icon, send me an email and I will confirm an invitation to you. Cut and paste this address into your browser. 

http://picasaweb.google.com/pat.n.mary/SharedMemoriesOfMary#

And please upload any pictures you may have of Mary.  If the upload button is missing, send me an email and I'll send you an invite.  My email is pat[a]lamey-hughes.com and replace the [a] with @ and it will arrive just fine. 

RIP Mary Elizabeth Teresa Quirk Hughes Lamey

March 7 1947                                                          April 8 2010

Mary died Thursday afternoon at 4:40PM PDT.  Reenie and I were at her side as her breathing stopped and her heart quit working. 

I cannot believe it is true even though I kissed her cold, jaundiced cheek goodbye after the doctor pronounced death officially at 5:50--it took that long for the doctor to come in and verify.   

She is gone from us now.  Please send any good thoughts, prayers, and strong feelings so she knows she is not forgotten.  


Mary was loved by her family and friends.  Truly loved.  I cannot believe her death is true even though I was there when her breath stopped and she died. I half expect she will wander into the bedroom tonight.   


Please send me any Mary experiences you have that I may use in the eulogy. 


Plans are not firm yet, but we are planning a memorial service in Los Gatos followed by a memorial service in St. Paul. Interment will be at the Quirk family plot at Resurrection cemetery in St Paul.  Mary ask that I host a "celebration of her life" party in a month or two to really appreciate her life.  Let me know if you want to attend the party.  


Pat 

Thursday, April 8

Mary continues to breath and her heart beats. Otherwise, she is in a coma like state with no acknowledgement of the world around her and virtually no reaction to stimulation--touch, cold, hot whatever.  Her breathing is labored but not inconsistent with her situation.  Today's nurse just checked in and said it is as if she is in a very deep sleep.  But we know it is more than a sleep, it is soon the end.  


She spent a quiet night last night because the drugs are keeping her comfortable.  


If there was one thing Mary never wanted was to linger by being kept artificially alive by our latest medical technologies.  And, Stanford has done a great job following her advanced directive that clearly states that intention.  For me, these last couple of days have been extremely difficult as Mary's own body continues to linger without medical technology assistance long after her cognitive functions have quit.  And, long after the projections from the various doctors. Mary continues to surprise us, even as she dies. 

A long Wednesday

Mary is in full Comfort Care now.  Her heart and lungs are still working away while her liver, kidneys, brain and other organs are close to fully shutting down if they have not already.  For example, her foley collection device amount for the past 12 hours is damn near zero.  Comfort care means no blood tests, no temperature or blood pressure tests, none of the routine hospital things that cause irritation or discomfort to the patient. We are in a very quiet single room and they have set up a twin sized rollaway bed for the overnight family member.  Tonight it is me.

About noontime today, we thought she would leave us.  She then muscled through a few tough hours.  As of 10PM tonight she has an oxygen feed, a low flow saline IV, a morphine drip and on demand ativan to provide comfort during the night.  None of the staff is willing to predict about Mary now. She has blown through all of the predictions we have collected so far.  The spiritual care provider, a wonderful woman named Lori, said that she wants the doctors to stop giving predictions because they are never right.

In Mary's case it is clear that it will be soon.  She has not moved an arm or a leg all day today.  She is not cognizant of us on any level that we can detect.  It is highly unlikely she will make it through tomorrow.

Part of knowing Mary is knowing how precise she was with words.  And, one of the words that used to drive her crazy was the euphemism "pass" instead of "die".  When my father died in 1996, Mary often questioned my use of the expression, "...my father passed away...".
Mary would say, "Why don't you say 'he died', why use the word 'pass'? After all, what he did was die."
Now here we are and it is Mary who is about to die.  Not pass, not expire, none of those 'soft' terms.  Mary wants us to say that she died.  So I am not being brutal or insensitive or difficult. I am honoring the wishes of my beloved spouse to use the terms she preferred we use.

Tomorrow, Daniel heads back to Pennsylvania and Lara, Scott and the girls head home to Pasadena.  Reenie changed her ticket to stay through Tuesday next week to help me with the next steps after Mary...dies.

And Mary will die soon.  The longer she goes on, the sooner it is likely to happen.   There is no escape from liver failure.

I will keep you posted.

Still waiting on Wednesday morning

Reenie did the rotation last night in Mary's room and Mary continues to confound the experts.  Her kidneys are producing virtually nothing, her skin color reflects the extreme jaundice caused by liver failure, and she has not had a conscious interaction since Monday morning--48 hours ago.  Starting last night about 10PM, her breathing became very heavy and labored and it continued through the night.  


In spite of all that, she shows oxygen saturation from 94-96% (a very good number, considering) and her pulse has been consistent between 80 and 120.  


I made it to Mary's room about 7AM and we have not seen a rambler yet.  They do individual rounds from 7 to 8, and will show up as a group between 10AM and noon.  I guess they have gotten reports from the nurses that there is no change. 


That is all for now. 


Pat 

Time goes by so slowly

At one time today, Reenie and I thought we detected a flicker of consciousness from Mary.  We talked to her but could not confirm any real connection which is the realistic position given hepatic encephalopathy.  The doctors are a bit surprised she is still with us and expect the end soon.


I did find "our song" on my iPhone and played it for Mary.  Unchained Melody was our song when we dated in college from 1965 to the winter of 1968.  And, it is the song that hit the pop charts again when it was used for the movie Ghost in 1990.  Many folks don't comprehend the words, so I thought I'd post them for you here.

Righteous Brothers Video Clip 
Oh, my love
my darling
I've hungered for your touch
a long lonely time
and time goes by so slowly
and time can do so much
are you still mine?
I need your love
I need your love
Godspeed your love to me

Lonely rivers flow to the sea,
to the sea
to the open arms of the sea
lonely rivers sigh 'wait for me, wait for me'
I'll be coming home wait for me

Oh, my love
my darling
I've hungered for your touch
a long lonely time
and time goes by so slowly
and time can do so much
are you still mine?
I need your love
I need your love
Godspeed your love to me

And a few hours more...

Tuesday finds little change. The doctor just made rounds and said this is often the case. We continue to wait.

A few hours remaining

Mary stopped interacting with us early this morning. That was an indication that the hepatic encephalopathy had finally penetrated her brain and she had lost her cognitive functions.  The doctors adjusted her pain medications from lydicain with fentanyl boosters to morphine which has given her much comfort and relaxation.  


We have had a very nice day with almost all the family members assembled here at Stanford. The spiritual counselor stopped in and we arranged a very nice bedside ceremony providing blessing and guidance for Mary as she passes from this life.


I assembled this incomplete montage of pictures of Mary as we prepared for the surgery a year ago.  If you would like to slow them down, click on any image and it will take you to the photo website where you can browse at your leisure.  
iPad users click here. 

Rat Dog

Mary's condition continues to deteriorate.  Saturday morning she was clearly communicative (although not loquacious) and she was even eating a bit of fruit and cottage cheese.  They put the epidural catheter in and the initial result was very good but then the pain started building again.  On Sunday, they did an xray to confirm the location of the catheter and the dispersion of the medicine and everything was perfect. They changed the medication in the catheter and Mary's pain level dropped immediately. 


Mary has acknowledged her visitors, saying hello and often calling them by name.  And, that is about where the conversation stops--except for the grandkids.  She really tries to go a bit further in talking with them, if only an extra phase or two.  


Last night as a group of family members we were visiting and talking, the conversation changed to discuss the new haircut that Shawna, our english cocker spaniel, had been given last week.  I said that when the cockers get their spring "field cut", I call them "rat dog" because of the way they look until the coat grows back.  Sure enough, out of a bit of a drowsiness, Mary pronounces "rat dog".  Fortunately, those were not her last words.  

We had a family meeting on Friday afternoon with the attending oncologist.  It was a surreal scene with grandkids, offspring and spouses, two oncologists and one pain doctor all in this double room configured for one patient. Dr. Allison Kurian (click here and here) did a fantastic job in describing what was happening to Mary and where it would lead.  

A year ago as we began this journey with cholangiocarcinoma, we did file advanced directives and I am very pleased that the Stanford team is honoring Mary's wishes as we continue this journey.  

During the Friday meeting, Dr. Kurian with great consideration and empathy told us that no one can predict what will happen.  However, based on the increasing rate of deterioration during one week in the hospital, the failing status of her liver and kidneys and the likely impact of the retained fluids and hepatic encephalopathy, Mary's remaining time will not be measured in weeks, rather in days.  

As I wrote previously, we'll never be ready for the ultimate result, we won't be surprised either.  

Do it now!

On this Weekend of Multiple Holidays, stop whatever you are doing, take a few minutes to tell ALL the people you love that you do love them. If you are with them, deliver that message with a hug. If they are not with you, get on the electronic communication of your choice and let them know. We don't know how long we'll be able to deliver that message.  Don't assume it can be done tomorrow.  

Pat  

Easter Sunday Morning Report

Mary continues her struggle with cholangiocarcinoma.  It is Easter morning, I am sitting at the foot of her bed, and the area is eerily quiet.  I spent the night here after Daniel had done so for the last two nights.  As I type, I hear the hum of the air conditioning system as a background to Mary's very shallow, labored breathing.  


Thursday's procedure did not work for Mary's pain.  We did, however, make an interesting observation during the preparation.  Instead of continuing her sleepy and dreamy state, Mary became awake and sharp about 10AM.  We had skipped her most recent MSContin dose in preparation for the Thursday procedure.  Morphine is cleared from the body by the liver so given Mary's failing liver, any morphine hangs around much longer than is typical.  Giving her MSContin on an 8 hour scheduled was overdosing her into a dreamlike state.  I should note that MSContin comes in various sizes and Mary has been taking the smallest one they make. And, the pill cannot be cut because of the way it holds the morphine. 


To prove the theory, we would skip her MSContin dose on Friday evening to see if she woke up soon after the missed dose.  And, in fact, she did.  We waited a bit to make sure she was really clear and then we notified the nurse.  She called the doctor to witness the alertness.  The on-call doctor entered the room while Mary had her eyes closed.  He asked us what was up and we said we wanted him to observe her degree of alertness.  
A rather unctuous fellow, he stood away from the bed and said "I don't see much activity and I understand she is somnolent and non-responsive" to which I said, "Mary, please say hello to the doctor."  Mary opened her eyes, turned her head and clearly said, "Hello Doc, nice to meet you."  The doctor rocked back on his heels and started a whole rationalization of why he was so busy and couldn't possibly have known this and that about Mary's case and I don't know why he blathered about that.  I asked him to document what he saw so the pain doctors could proceed with their epidural catheter. 


On Saturday morning, Mary was in the best mental shape we have seen for many days. The MSContin was not administered and she was using short acting fentanyl which was actually acting a bit longer that normal because her liver was not flushing it as fast from her system. 


The procedure was done early Saturday afternoon.  The pain doctors are still seeking the best dose of pain killer through the epi cath. In the meantime, she is on liquid morphine for pain and that knocks her our for several hours at a time.  So the promised clarity from the epi cath has not arrived. 


The moments of clarity are so precious.  We want to maximize them as much as possible as long as they do not cause Mary any further pain.  A failing liver typically results in hepatic encephalopathy (HE).  The symptoms of HE are similar to the effect of morphine overdose.  Withholding those MSContin doses proved that Mary was not yet fully suffering from HE but rather from morphine overdose.  


If they can trim in the epi cath dose and Mary can stop taking the narcotics, she should remain in a clear headed state until the HE takes over and puts her back into a dreamlike condition.  


The other event is that Mary was moved to a private room. On Thursday morning, I told the nursing staff that we had all the kids and grandkids coming in from all over the country and I was concerned about the impact on Mary's roommate plus space to let them visit.  On Thursday afternoon, they moved Mary's roommate to a different room and gave us the whole room with the caveat that Mary would move when a private room opened.  From about 4PM on Thursday to about the same time on Saturday, Mary was the only occupant of a double room and now she is in a private room.  The best part is that it is "away from the action" and substantially quieter than the former room. 


Since Thursday, Mary and I have been surrounded by our families.  Mary's son Tim and daughter Charlize from Tucson,  Lara and Scott with daughters Madelyn and Emma from Pasadena, my son Chris with Casey and offspring Danny and Sarah from Denver, Mary's son Daniel from Pennsylvania and my daughter Erika from New York have all surrounded us with love and caring in this very trying and taxing time.  They have spent hours and hours with us here in the hospital and it is most appreciated.  


I also want to thank our friends who have done taxi service to and from both San Francisco and San Jose airports as needed.  Ingrid, MaryR, Glenn, Michele, Terry and Barnes have all helped so wonderfully.  


Mary's breathing continues in its shallow, labored style.  While typing this I have met the new day nurse, Davinder and nurse's assistant, Nancy.  I must comment that the nursing team here in the cancer section have been exceptionally capable, caring and sensitive.  
  

Good Friday is Bad

Let me describe the situation.  


Mary's liver is clearly failing and the rate of failure appears to be increasing.  Also, her kidneys are failing.  How do they know this?  They measure (1) CA-19-9, a marker for cancer presence in the body, (2) bilirubin, one of those wonderful chemical compounds that enables the living process and (3) albumin, another one of those wonderful compounds.  There are other confirming tests, but these are the big three. 


In Mary's case, the CA-19-9 results taken last April, prior to the liver surgery, were in the range of 1,500 and higher.  After surgery, they fell to 500 in June and then continuously decreased through February's blood test taken on February 19th at a value under 300 which lead the Oncologist to declare she was cancer free.  The test taken a week ago as Mary entered the hospital produced a value of 1,500, a fivefold increase in 5 weeks.  


The bilirubin and albumin are two body chemistries that are absolutely essential to life and produced all over the body by various organs and body parts.  When the liver stops properly processing, the bilirubin and albumin start to build up in the body because their normal liver exits are blocked.  The data for bilirubin from April of last year to current shows a peak value before surgery, another peak during radiation+chemo therapy and a peak now.  However, all other months showed absolutely in the proper range values. 


Albumin is another compound produced throughout the body and removed, in part, by the liver.  The fluid extracted from Mary's abdomen on Monday was albumin, indicative of a serious blockage of the liver.  However, the cytology test of the albumin has not presented a "pathologically certain" presence of cancer.  


So what we have is a therapeutic diagnosis. I liken this to the description of an animal: It walks like a duck, it squawks like a duck, it swims like a duck and flies like a duck. We cannot see the animal, but what do you suppose it is? A duck. Ya think? 


The CA 19-9, bilirubin, and albumin data taken with the jaundice color of Mary's skin, her fluid retention symptoms, her history of cancer and her overall pain leads one to cholangiocarcinoma.  We cannot see it (pathologically certain) but given what we do know and it behaviors, the only diagnosis that fits is cholangiocarcinoma.  


Why did we think she was cancer free just a few weeks ago? Because all of the test results were absolutely in the correct values, especially the CA 19-9.  The only fly in the ointment was the recurring back pain which we thought was anything but cancer.  And remember, we had cancer specialists looking for a connection between the pain and the cancer tests and could not find anything that would indicated the presence of cancer.  


The bottom line: Mary's cancer has reappeared with a vengeance and is in the process of shutting down her liver and following close behind is her kidneys. 


Is there anything that can be done? Nope, we did it last year with the liver trisegmentectomy.  Can you irradiate the liver to stop damage by cancer? Again, no, for the simple reason that because we cannot see it, we cannot hit it with an x-ray beam and expect any successful effect. Liver transplant?  Nope, excluded by nature of Mary's cancer and last year's operation. What can be done?  Palliative care to provide comfort to Mary.  


We had family meeting with the oncology team and medical team.  As a result, we understand the likely progression from here for Mary. Although we'll never be ready for the ultimate result, we won't be surprised either.  

A long day

Tim and Charli were first to arrive from Tucson.  Next were Chris, Casey, Danny and Sarah from Denver followed by Erika from New York.  Lara, Scott, Maddie and Emma then arrived from Pasadena and finally Daniel from Pennsylvania about 1AM. I am so glad they could all come and that the grand children were able to say hello to Grandma.  Grandma talked to each one of them for a few seconds, kisses were exchanged and then the five youngest proceeded to tear up the cancer wing! 

Last night, I stayed in Mary's room on a cot.  Tonight, Daniel agreed to stay in the room so we have family coverage at all times. 

As for Mary's condition, she continues to spend most of her time being non-responsive.

The kids are on the way

As many of you had figured out by my posting last night, Mary's condition is getting progressively worse.  And, it is to the point that we have flipped from trying to cure her to providing palliative care to make her comfortable.

The doctor advised that the family gather so as I write this, Lara, Tim and Daniel plus the grand girls are on the way to Stanford.  And my offspring, Chris with his family and Erika from New York are also on the way. Everyone will be her by midnight.

Also, the doctor said, "Her systems are shutting down."  I have not gotten any medical professional to translate that to time because they are all trained to say, "You need to talk to her Oncologist and we will brief him before he sees you."  That should be some "hospital time" today.

The outlook isn't getting better

Mary is not getting better.  And the outlook, based on the observed behavior of her body's functions, is very bleak.  


As much as the doctors' tell me to be postive, I can also see it in their eyes.  In the last 24 hours, their hope for Mary to recover has faded and is continuing to fade. 


Maybe I can write more later, but right now I just want all of you to know things are not great. I need to be terse tonight, maybe I'll write more later. 

Wednesday isn't better--so far

I arrived about 7:40AM and Mary acknowledged my arrival.  We had a bit of a chat and she said the pain was still low. The pain doctors had reduced the MSContin to 15mg as of the 6AM dose with orders for 15-15-15 on an eight hour cycle compared to the 30-30-45 she had been on at home before things began going bad. Given a 15 mg dose at 6AM and that she has drifted off again is causing the doctors to be concerned about much too much morphine in her system.  


Mary has now signed the consent for the celiac plexus block (CPB) which is now set for tomorrow.  The expectation is the CPB will interrupt the nerve signals allowing Mary to drop much of the pain medication regimen and thus regain clarity of thought again. The pain doctor who had been neutral to the procedure now believes it is necessary because there is not a satisfactory low-high dose of morphine for Mary's condition.  


This first CPB uses anesthetic and provides about 24 hours of relief.  If it does, then they go back in an inject drugs that kill the nerves.  


Mary has not been able to urinate, probably because her abdomen is so enlarged and her mind is so fuzzy that she cannot get the valves to work. As a result, they put a catheter in her this AM.  She has produced more fluid in the first hour than she did all day yesterday so that is good. 


The doctors have definitely ruled out infection which I didn't realize was on the agenda for consideration.  They have also ruled out mechanical blockage based on the images that have been taken.  That leaves inflammation or cancer.  They admitted there is still the very remote possibility that its infection or mechanical blockage.  (What have we done to our medical profession that they all talk like attorneys now?)  The answer may be in the results from the paracentesis done on Monday.  The Oncology team said that it can take up to three days but they would start harassing the pathology folks to get an answer today.  


The paracentesis results are in multiple parts.  The early parts did definitely confirm the fluid was albumin and also ruled out infection. I have asked both Reenie and the doctors where albumin would be coming from.  Apparently it can be generated by many organs in the body if those organs are experiencing some form of distress.  Given they have ruled out infection and mechanical blockage, the distress could be from 1) inflammation such as physical damage like a fall or accident or 2) cancer cells in the peritoneal cavity.  And, the cytology we are waiting for may tell us if cancer cells are present in the fluid which came from the peritoneal cavity.  This is a pretty good link to four pages describing the paracentesis procedure.  The third page discusses results.   We are waiting for the cytology on the sample which is done by centrifuging the fluid to collect the cells and then laboriously looking at the collected cells under a microscope. 


Mary did not eat a bit of her breakfast.  Lunch just arrived and I am going to see if we can get some food into our girl. 

Tuesday news

Mary was alert enough to get on the phone with Lara and a little later with Daniel.  She was able to hold a bit of a conversation for about a minute or two and then her mind starts to wander.  At that point I took the phone and we had nice chats. 


I arrived at 7AM thanks to the early departure of Reenie for Du Loot--I just proceeded on to the hospital. Mary was awake, alert and greeted me with a big hello. I was surprised given Mary's sleepy, non-responsive state yesterday. Reenie called me from Duluth so she is home now. 


When the pain doctors came by in preparation for the celiac block procedure, Mary simply said that she didn't know what it was and she would like to wait 24 hours until her brain clears and she can make an informed decision.  I must say the doc was surprised because he explained it yesterday--to the narcotic fuzzy-head patient that looks exactly like Mary--when she was totally out of it--Duh!  I was pleased that she was aware enough to realize that she was doped up and should not make such a key decision.   
  
The ramble of oncology residents came through today and confirmed that they don't know. The results from the two liters of fluid have not come back for a cancer confirmation. 


Tom E (Cretin High School classmate) dropped in this morning and MaryR dropped in this afternoon.  MaryR finished work, came for a visit at the hospital, is now heading home and will feed our dogs on the way. Thanks to both of you for stopping in.  

A quick status

No celiac plexus procedure today--postponed at Mary's request.

Mary is much more alert and engaged than yesterday but there are still substantial periods of narcotic fuzzies.

Reenie flew home this AM on a 6:30AM flight.

The results from the paracentesis have not come back--yet!  (3:30PM).

I have not been posting because I've replaced Reenie's role in supplementing the nursing staff.  Its a lot of work!

More later

The pain doctor stopped in...

And he was very concerned about Mary's heavy sleeping all day long.  So much so, he has reduced her next several MSContin doses from 60mg to 30mg.  Morphine is processed by the liver for removal from the body.  Given Mary's liver is not running on all cylinders, it is likely that Mary is building up morphine to an inappropriate level.  Thus, the pain doc first woke her up and then changed the pain order to half of the prior dose. 


They are planning the celiac plexus nerve block tomorrow, some time between 11AM and 2PM. This is actually a two part procedure, with tomorrow's procedure using anesthetics to prove that numbing the celiac plexus actually does help Mary.  If it does reduce pain over the next day or two, then they go back in an apply the drugs that are fatal to the nerves.  


Mary continues to be totally out of it 93.5% of the time (a compromise between myself at 90% and Reenie's 97%).  With the reduced MSContin, I hope she is more alert and awake tomorrow. 


Reenie flies home tomorrow on a 6:30AM flight.  I will certainly miss her and I am sure Mary will too.  But, she has a husband and a job and she wants to keep at least one of them--I don't remember which.  Thank you, Thank you, Thank you Reenie!    

The draining is done

(Reposted due to font problems, no other changes.) 
They drained about 2L (about 2 quarts) of fluid from Mary. That is about 4.5 lbs (2kg) so it isn't much compared to the 17 lb gain since Friday morning.  As I wrote previously, some results will be available tonight, some will be tomorrow. 


The physical trainer arrived and taught Mary some in-bed exercises.  Mary was in her dreamy narcotics state so I am not sure how much 'took' but she did leave a set of diagrams and I'll be working with Mary tomorrow. They have also put leggings on her that massage her calves to minimize risk of clotting.  


The reading of the CT Scan by the "A Team" resulted in the same answer. They could not find anything that would represent a blockage or obstruction. of a problem.  In other words, the same situation we had originally a year ago when they couldn't confirm the cancer until they found it as a result of the gall bladder surgery.  


The pain doctors are recommending a celiac plexus nerve block to alleviate the pain and reduce the amount of painkiller Mary is taking.  You can read some write ups here, here and here. 


Mary's Oncologist, Dr. Fisher, dropped in for a visit.  He again iterated that the evidence is not absolute for a recurrence of cancer so they are continuing to seek other explanations, either inflammation or a mechanical block. Given Mary's response to the narcotics, he is not adverse to the proposed celiac plexus block which would reduce the level of pain, resulting in less narcotics in Mary's system and allowing Mary's brain to function again. 


Reenie and I had an argument today.  I think Mary was out of it 90% of the time and Reenie thought it was 97%.  Either way, Mary has not been as perky and communicative as yesterday.  This must be disappointing to her kids for they do want to talk to her.  

They are getting ready to pop the balloon

Two doctors are here and they re-ultrasounded her to confirm the pocket of fluids.  They have numbed her and are about to pop the balloon.  


Given my personal strengths, Reenie is standing bedside while I am firmly seated.  Last time (June last year) a bit of abdominal work was done post surgery, they managed to get the chair under me before I hit the ground.  This time I am proactively set up to not create a 2nd problem. 


The procedure seems to be going well and Reenie just noted that her tummy appears to be relaxing. 


Mary is awake and aware of what is going on.  


We'll have some results tonight and the rest tomorrow. 

Monday at Noon

Mary has been pretty much out of it today.  She does respond at times but immediately falls asleep again. She is definitely starting to bloat in her extremities and she has gained about 17 lbs (7.5kg) since she checked in here three days ago.  


The ultrasound was done and there is a big X on Mary's abdomen and now we are waiting for the drain team.  Apparently, this procedure can be done in the room.  I was able to watch the screen while the tech ran the ultrasound and there is lots of fluid in big collections all over her abdomen.  He picked a place below the bikini line--um, yeah, right. I don't think that is important!  


All in all, a quiet morning. 

The late report

Reenie and I left about 8PM tonight because we need to be back at Stanford by about 7AM.  Julie, who has been the night shift nurse all three nights, says the 8AM is fiction and that is the earliest they may call Mary.  More likely, some accident victim will push her back and the work will be done sometime during the morning. 

Mary was feeling a whole bunch better on MSContin this afternoon/evening.  She was awake, aware and although at time she had her eyes closed, she was listening and reacting to the conversation.  The nurses are still giving her fentanyl boosters for breakthrough pain although the doctors want to switch her to liquid morphine sulphate (aka Roxinol).  The issue is establishing the baseline need for MSContin so the nursing staff is working to make sure they get a clear understanding of Mary's pain levels by administering the fentanyl boosters over the MSContin baseline.  Bless those nurses!  And, bless those Pain Unit doctors who figured out that the Oncology pain regimen that Mary has been on since Feb 19 was the best thing for her after 36 hours of jerking her around!  Wow, impressive!

Mary continues to be severely bloated.  Reenie and I both think it looks like 8 months pregnant right now, up from 6 months yesterday.  The morning procedure may, if appropriate, drain some or a bunch of the fluid. Putting Mary back on Dr. Visser's diuretics may also help, although they are slow acting. Why is she bloating? They have an IV dripping saline into her, she is drinking tea and water and she is not urinating to match. Simple physics, the gozinta is bigger than the gozouta, hence, bloated abdomen. Her extremities are not showing the bloating which makes it different than the SIADH in May and the bloating that presented last summer. 

Where are we? We had a nice long conversation with the Fellow, Alex Ungewickell, who laid out all the likely scenarios.  We were very pleased that he had taken the time to read Mary's entire history back to her first contact with Dr. Banerjee in April of 2009.  Dr U was quoting specific issues we have encountered this past year. Great job!  It was very impressive.  Basically, we don't know what this could be yet.  Further testing and perhaps the paracentesis will tell us what is going on. We are still on 1) Inflammation, 2) Mechanical Blockage and 3) Return of cancer. 

Saturday's CT Scan is inconclusive for the simple fact that the weekend team is not used to looking at images of a liver trisegmentectomy after the fact.  Dr. U was very forthright in saying, "I cannot read the images, I have never seen a post-liver trisegmentectomy."  He has called in the "A Team" to figure out what the images are telling them. That will happen tomorrow.

On Tuesday, the pain unit doctors are proposing a procedure that would interrupt the nerve signals.  We'll discuss the pro's and con's after the ultrasound/paracentesis event in the morning.  The pain unit procedure would basically block any pain signals from the area that is now causing Mary undue pain and discomfort.

Reenie and I were feeling much better tonight as Mary was much more comfortable on the MSContin with Fentanyl boosters.  We shall see what morning brings. 

Plans for Monday Morning

Mary is scheduled for an abdominal ultrasound at 8AM. When I wrote earlier about the ultrasound, I was not aware that it was accompanied with an option for a procedure.  If they find the right conditions, they will do a paracentesis.  A paracentesis procedure boils down to "the needle in the tummy" to remove excess fluids and then the fluids are analyzed to see if they can determine the source of the fluid.  The condition is called ascites and here is a page in WebMD describing the whole enchilada.


As for the video I posted, it is from Mary's window and the helicopter pad is on the top of the building across from her room. I have tried, but the choppers approach from the other angle so I never get a shot of them in the air.


A quiet afternoon simply waiting. Mary's pain have changed, again. We are now back on MSContin with fentanyl boosters and the liquid morphine sulfate has been ordered but not dispensed yet.

Mary's Window Video

http://www.youtube.com/watch?v=HdhvV7NEGXU&feature=youtube_gdata

A bright and sunny Sunday

I arrived just before 8AM and missed an oncology internist.  The nurse told me that was probably the "scout" assessing patients before the main ramble shows up.  Who knew they needed a scout to find the patients and probably draw a map so the ramble can find them too?  When the pain resident showed up, I was here and we had a good discussion about Mary's pain killer history.  


The objective for the pain doctors is to find a regimen that Mary can use at home.  That is why they took her off the IV so soon.  And, as a result of the conversation and the fact that Mary was in pain all night with yesterday's fentanyl patch + Roxycodone, they are now willing to listen to us. I explained again Mary's successful history switching from the fentanyl patch to MSContin plus liquid morphine sulfate (Roxinol) in Feb and how that worked well.  


So as I finished the above paragraph, the pain ramblers arrived. Guess what?  They have discovered that MSContin plus liquid morphine sulfate (Roxinol) is the best solution for her!  And I am very sure they think it was their idea.  

In the middle of all of this, they brought Mary a breakfast consisting of cornflakes with non-fat milk, banana, OJ and coffee and tea.  Mary ate a few small bites of the cornflakes--something she never eats so I am not surprised--and a small bit of the banana.  Given that she had not had any solid food since Thursday, that is probably a good thing.  


The Oncology ramblers arrived and I was able to ask them a couple of key questions. First question addressed the diuretics.  Mary had been on diuretics ordered by the surgeon from post surgery until she went off of them in late Feb. Is this fluid retention something that going back on the diuretics would possibly alleviate?  I showed them the list of medications she had been taking and got a nod of approval for the diuretics. I just checked with the nurse and they are ordering her back on the diuretic originally prescribed by Dr. Visser. Imagine that! 


The second question addressed the results of the CT Scan.  The answer is that the final answer isn't going to be forthcoming until the A team looks at the images tomorrow.  The weekend team doesn't see any obvious blockage.  Then again, I don't know how many liver trisegmentectomy images they look at so we'll just wait for the A team interpretations on Monday. In addition, we got clarification on the nature of the obstruction: the obstruction is inferred from the blood test data and there is no other confirmation yet.  OK, gang, I understand that. Now can we concentrate on Mary's distended belly.  She looks like she is about 7 months pregnant and her belly button is just about inverted.  


They are ordering an ultrasound of the distended belly in an attempt to establish how the fluid is being retained. There is a small pocket of fluid on the CT scan but that would not explain Mary's distended belly.  


The pain folks have also put her on the schedule for some form of a spinal nerve block procedure.  They will come back to discuss the procedure later today and the risks.  Decision to proceed will be after that.  


This morning, I talked with Daniel so we have had in depth conversations with Mary's three offspring.  


More later...

Saturday at nite-nite time

What was accomplished today?  

We have the Oncology people focused on Mary's improperly functioning liver and bloated abdomen.  We have the pain specialists working on making Mary pain free and fully awake.  It feels like there might be just one or two too many chefs in the kitchen but perhaps this will get us to a resolution sooner.  

For the Oncology folks, they have drawn a pile of blood, taken x-rays of Mary's midsection, run a CT scan of Mary's abdomen and juiced her with two units of red blood platelets.  We don't have the final results back yet and what we have heard is inconclusive, partly because the analysis is not complete by the specialists, partly because junior ramblers are delivering the info and they are probably not authorized to tell us too much. 

The pain folks have taken Mary off the fentanyl dispensing unit that included a push button so Mary could hit it as needed and put her on a 25 microgram fentanyl patch.  This was done before the pain folks talked to me because I could tell them what would happen. Mary did this in January and goes immediately into a nausea-vomiting routine even if she had nothing to eat i.e., dry heaves.  A few hours later, they adjusted it to a 12 microgram patch and again, I could tell them her need for Roxinol (Morphine Sulfate) would shoot way up.  Guess what?  

What is different is that she is on ipuprofen (which cancels taking Celebrex), Lyrica and now Cymbalta.  These non-narcotics provide pain relief and we were not doing that in Jan-Feb.  

Mary's belly is distended and remember, her liver is now located front and center. After the liver resection last May, they left a triangular chuck of liver just above the belly button.  When the liver regenerates, it grows the triangle to be a bigger triangle, it does not reshape itself back to a natural configuration.  Mary's abdomen is definitely enlarged and appears to have increased just in the past day or two.  It is possible that Mary's heavily customized plumbing job--no bile ducts, a Roux-en-Y procedure, regenerated liver and rerouted intestine into the space where a normal liver would be has caused a mechanical blockage and that is the source of the problem.

Mary was visited by a Ramble of Residents today and we educated them as to Reenie and Mary's term for the herd of white smocked medical folks that swam the patient's bed like bees on honey. I think the staff doctor leading the ramble enjoyed the definition. 

By the end of the evening, Mary appeared to be comfortable but was not able to carry on conversations.  I talked to Tim and Lara and after we hung up, Mary did agree with what I had said so apparently she was engaged. 

Hopefully, the pain docs will have her comfortable, awake and engaged tomorrow. We shall see! 

Saturday at 6PM

Mary did get her CT Scan done. And, the preliminary report is that no obvious blockage is observed in her liver.  The final reading by the specialist(s) will be done by tomorrow.  What does that mean?  We don't know, it was a fairly junior rambler who delivered that message and he was not giving us any clue as to what it meant.  


The pain docs are in the loop and they seem to change her drugs every couple of hours.  They are trying to give her comfort and to keep her awake at the same time.  So far, they either put her to sleep or if she is awake, she is in pain.  Hopefully they will home in on a solution that balances out the pain vs alertness/drowsiness.  


Mary has been on an IV for fentanyl, fentanyl patch at 12 and 25micrograms/hr plus she is on Celebrex and now Cymbalta.  She is also approved for Roxycodone at various (increasing) doses as needed.  


The priority is to get Mary comfortable and then really dive in on the liver. From what I can tell, the oncology docs are moving faster than the pain docs so we'll probably hear about the liver long before they find an optimum point for the pain.