Topic: the journey continues..........this post will be a long one.

Hi all,

To update you guys we brought my Mom home from Duke on Sunday afternoon.  We had hoped to drain most of her fluid build up but were only able after two paracentesis to get a total of about 800 cc (less than a liter).  The fluid was loculated (in medical speak it's in "pockets").  We did the procedure at the bedside on Friday and then an ultrasound guided one on Saturday. 

I pulled "professional courtesy" on the radiologist and was able to be with Mom during both procedures.  She did very well as I was with her and talked her through the procedures.  Unfortunately the ultrasound showed that instead of being all fluid we were dealing with carcinomatosis.  (Lots of tiny tumors throughout the belly.

Her confusion comes and goes.  However on Saturday night my Dad and I were in her room and received what I consider the most precious gift from God.  We were chatting and all of a sudden my Mom became "sharp as a tack".  She asked me why they didn't remove more fluid and I told her it was loculated, explained what that meant and that it looked like most of the mass in her belly was new tumor.  This led to a dicusssion of what I thought the doctor might tell her when we returned to Duke for her scheduled appointment on Tuesday. 

I could tell she wanted the truth so I told her that in my opinion the chemo had ceased to work and reminded her that at some point we knew it would happen.  I told her I thought her oncologist would have nothing else in his medical bag to offer her.    She said she was thankful that the 4 chemos had given her much more time and she was glad she had done them.  She'd not had a single side effect.  She was able to see the birth of her second great grandchild and the marriage of her only granddaughter.

Somehow we ended up "shooting the elephant" in the room and began to talk about Hospice and Palliative care.  I told her Hospice was all about LIVING not dying and that I thought we should contact them when we got home.  She agreed and we continued to talk about things she wanted to do - letters to write to her grandchildren and friends she wanted to visit.   I confessed that I had contacted Hospice about two weeks ago and had everything all ready set up  - just needing to make a phone call so that she and Daddy wouldn't have to.  She smiled when I told her that she and Daddy were my primary concern.  (incidently she said she "forgave" me for taking the initiative.)

I witnessed the most loving, touching moment between my Mom and Dad when Mom reached up and placed her hand under Daddys on the bed rail.  He wrapped her hand in his and smiled and asked, "Are you still my sweety?".  Mom smiled and replied, "always and forever".    They will be married for 58 years in April.  Daddy told her he was at peace with where they are in this illness and only wanted her to be comfortable and pain free and live fully and in the moment with whatever time God gave them together.  He told her that only God knew how long she would be here with us but that the separation would only be temporary since they both knew where they would spend eternity.  Together and with God.  They laughed and decided which ever one got there first would wait for the other.

Mom acknowledged that she knew she was confused at times but wanted Daddy and me to know she was on board with taking the next step of the journey.  She discussed  and brought up issues about DNR orders (Do not rescuitate) and advanced directives.  She was amazing.  She reminded us that when she was confused that we were to remember not what she said then but to remember this conversation.

We got home on Sunday and the Hospice Consult nurse came to the house that afternoon. 

On the way home from the hospital she became very confused and when asked if she were ok told us that she was "going to run away from home".  She couldn't tell us why but she was angry.  Daddy got in the backseat and held her close and they whispered together most of the way home.  By the time the nurse arrived she was still slightly confused but warmed up as the Nurse spoke with her.  We decided to treat the visit as an initial consult until we spoke to her Oncologist on Tuesday at Duke.

On Tuesday we met with her Oncologist and things went as expected.  Dr. Morse was so compassionate as he explained he felt that we had done everthing possible to treat her.  He told her she needed to focus now on the quality of her life and take time to do things she wanted to do.   One again we got another gift from God and she was perfectly lucid.   She asked him how he thought she had gotten this cancer and he told her he wished he knew but had no idea.  She thanked him for his care and compassion and for always being honest with her.  She said she gave him an A+ on skill and bedside manner.

She told him she had met with the Hospice people and that she would be taking that next step.  He hugged us all tightly and told us to call if we needed anything.

Hopice came Tuesday afternoon and they are going to deliver some equipment today and her assigned nurse and social worker will come tomorrow.  The small taste I've gotten about Hospice so far is amazing.  They are upbeat and stress that Hospice is about living as fully as possible.

What they offer is unbelievable.  Forgive this long post but I wanted to let MY SUPPORT TEAM know where we are.

Mom and Dad were in the den a while ago and Mom wanted him to get an envelope from her dresser.  Apparently she had started to write her obituary some time ago.  She and Daddy have spent the last twently minutes discussing her obituary and funeral.  I shamelessly eavesdropped from the hall and started to cry when she asked him if he would sing at her funeral.  (He assured her that he would.) 

This is an amazing, crazy, emotionally draining, feeling of living in the twilight zone.  Talk about highs and lows.  I am learning how much my parents love each other and what love truly means.  I hope I can be as good to my husband as my parents are to each other.  It's humbling to witness such love.

Mom and Dad have now gotten in the car to go and get milkshakes and go for a drive.  (Mom reminded me that Friday night dates in the hospital don't count).   Friday and Saturday night dates have been the rule since they were first married.  In the times without much money, they window-shopped, but as their daughters, my sister and I always knew certain nights were for Mom and Dad alone.

Thanks for letting me get all of this out.  At least I feel better.

You are all in my thoughts and prayers...

The journey continues.............

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: the journey continues..........this post will be a long one.

Pam....
My thoughts are with you and your wonderful parents during this journey.

Charlene Eloi
Daughter of David Cook

Re: the journey continues..........this post will be a long one.

Pam.....your posting touches my heart in a special way.  Thank you for sharing.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: the journey continues..........this post will be a long one.

Dearest Pam, I am just crying through your post. Not tears of sadness, but tears for the beauty of your story at how loving and caring your family is. What a great legacy your mom is leaving all of you. And the humor. Its like I wish I could have known your mom. You are a very strong woman, think I have said that to you before, and have certainly eased this painful road for your parents.
Keep each other close and create memories like you have at this end of the journey. Prayers are coming your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: the journey continues..........this post will be a long one.

Pam - thank you for sharing your most initimate thoughts during this journey. I am with Lainy as tears flow and I think back to the process of Hospice, alertness and hulicinations with my dad just 6 weeks ago.  What a precious time for you, take it all in, these memories, the sad ones and the sweet ones will be precious, very precious.  My heart goes out to you during this time.  Prayers and hugs to you and your family during this time.

Smiles through tears,
Patsy

Re: the journey continues..........this post will be a long one.

Pam,
Thank you for sharing the journey you are walking.  I sit here in tears reading about the love that is so plentiful in your family.  I am so happy for you that Mom was lucid for the talks of importance as it will help you to proceed in future decisions.
Peace,
Karen

Wishing all God's blessings!

Re: the journey continues..........this post will be a long one.

Pam,

Thanks for sharing. I also have tears in my eyes. Know that you & your family are in my thoughts & prayers.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: the journey continues..........this post will be a long one.

Pam,

What a lovely post. I am so glad your family is getting the moments they need. God bless you all.


Jan