morning coffee with you

Over the past year Ginny and I have committed to having morning coffee with one another. It has become sacred time for us. In the past months I have become acutely aware that these moments are the sweetest and dearest of my days with Gin. This morning we decided to share our coffee conversation with others.

The pups love morning coffee too...

This is the first of many updates and communications to come in the coming weeks and months. You should expect to be part of more of our morning coffee dates as well as receive new health updates.

Let's start with morning pillow talk. 

A little info to give you some context for our conversation, we hosted a release party for Ginny's latest book yesterday at Sweet Reads, our local book store. We were processing the event this morning.

Morning Brew with Kir & Gin Episode 1

Morning Brew Episode 1 - Post Script

Saving Grace is available on Amazon if you are wanting a copy.  She did a beautiful job.  True Ginny!

A Season Changes

We have had sad days.  Our beloved Kris Wee passed one week after Thanksgiving.  We were there to celebrate with her family.  It truly was a day full of love, grace and gratitude.

Over the past months we have been blessed to have time with this great love.  Ginny spent days in October working on her next book on a several day a visit with Kris in Stillwater and in her final days we were present providing practical support and spending time reassuring each other, loving each other and making sure we parted without regrets.

This past Wednesday we joined her family and friends to say our collective goodbyes.  It was a lovely service.  It "oozed" of Kris.  She crafted a beautiful farewell.  The scripture chosen by her.  All designed to love on us and comfort us.  Even in death she holds us close.

She loved me from the start. She accepted my love for Ginny immediately. She recognized me. She saw me for me. She affirmed my strengths and my heart. I LOVED to be in her physical space and always knew that she held me close when we were apart. Grace and love without condition. Kris Wee has been one of the greatest friend loves of my life. (Kir)

This is where I wish I could stop, but I know I need to give a Ginny update.  So linger in the love of Kris little more before you continue reading.

There have been some changes in Ginny's symptom management.  In the past couple of weeks, the "double kidney hook-up" has failed.  In an effort to address the pain the stent was causing and to respond to the greater issues caused by her urinary system, the hook-up was removed Thursday of this past week and the original nephrostomy tube set up was put back in place.  This has solved the urinary system pain and discomfort.  A foley catheter has been placed to address other challenges.  Ginny, in her cheerfulness, has joked about her "accessories".  There is a whole lot going on and that sweet Gin rolls with it beautifully.

Yesterday we returned for our second day this week to meet with the Palliative Team.  We are so well cared for there.  I can not say enough about this group of humans.

Gin is experiencing increasing rectal pain, caused by tumor growth.  The pump is limited in its ability to address the various types of pain she experiences.  The dilaudid does not address nerve pain and so  an oral med designed for nerve pan has been added to the daily arsenal.  We are hoping this will help.  The tumor is also impacting her lymphatic system.  For the past month Gin has struggled with edema in her right leg.  Efforts to address this issue with meds have failed.  Team docs has agreed that the tumor is impacting the flow of fluid.  My lymphedema experience (I have lymphedema in my arm) will come in handy.  Our morning routine will include some lymphy massage and wrapping.

As a care giver, my responsibilities are growing.  Morning routines have changed this week and Gin requires more and more help.  

This is where I am to make sure you all know she is still busy, still vacuuming, still caring for our dogs and still making it out and about for her loved activities and events. Oh and she is cheerful.

I am humored that she asks me to make sure you all know she is cheerful.  I understand her wanting to clarify, as sometimes these updates sound pretty grim.  We share this info because we know that it is important for many of you to know, but we are also wanting to make sure you know she is still living her life and doing it well.

We are gearing up for a crazy great Christmas.  I have gone overboard with outdoor Christmas lights and we are preparing to host loved ones.  Ginny's brother Dan will be with us, as will our friend Sue Blough.  On Christmas Eve and Christmas day Jocelyn, Byron, Allegra and Haakon will join us and on the 26th (Boxing Day) the Morks will be here.  Lots of energy and anticipation.  Love is coming home for Christmas.

I want to wrap this up with the benediction from Kris Wee's service.  She wrote it...

May the fire of the spirit

make you luminous with love.

May a passion for justice

smolder within you.

May your sense of humor

sparkle in the air with brilliance.

May compassion kindle a flame

in your soul.

May the presence of the Divine

ignite you with courage to

risk all for good and God.

Amen.

Kristin Borsgard Wee, Pastor

It Works!

The new plumbing system is in and it is working as hoped!  The first night she slept 5 hours uninterrupted.  There really isn't much more to say.

We Met One of Mayo's Best Plumbers Today

We met a fantastic Urologist today.  She took the time we needed, answered our questions and helped us make what I believe is a great decision about what to do next.

Ginny has not slept for more than 2 hours in one sitting for almost a year. Her urinary system is a mess.  She currently has a nephrostomy tube and drainage system.  They put a new on in on Tuesday. These are exchanged every 10 weeks.  

For those of you who are curious...

This first pic is what Gin currently has.  A nephrostomy tube that drains her right kidney.

This next pic is what we are going to try next.  A nephroureterostomy catheter.  This is a longer catheter that enters the kidney and travels all the way to the bladder.  The idea is that this will draw all of her urine out via her nephew bag and take the pressure off the bladder.  So instead of waiting 10 weeks, Gin is scheduled to go back October 31st to have the longer tubing placed.  This is contingent on the team being able to get through the ureter.  This area is impacted by the tumor and is where Gin had stents placed in the past.  So fingers crossed.

Gin is also being treated for a fluid build up in her lungs.  I truly believe that once these items are taken care of that she will feel better and she will stabilize.  

Kir

No More Magic Potions

Over the past 8 years there have been many ups and downs. Cancer has been a constant companion, the trois in the ménage à trois, the third wheel in our marriage.

I have known for 8 years that one day we would walk into Mayo Clinic to visit with our outstanding team and be told that they have nothing more to offer. On Tuesday the oncology wizards revealed that they had nothing more, no more tricks, no more magic potions.

Our beloved Dr. Weroha did, as is his duty, share two experimental and out of the box options that were not really appropriate given Ginny's circumstances.

This is where I tell you that she is NOT DYING NOW! She is very concerned that people will read this and think it is over. It is not over yet. She has simply decided to "let nature take its course".

So, our oncologist moves from team lead to a team member and our charming and exceptional palliative team doctor (Dr. Kelly Christensen) will take the lead. We like her very much.

The focus is keeping Ginny rocking and rolling as long as she is able. We are making plans for a very Merry Christmas and I will be planting tulip bulbs in the next couple of weeks with the expectation that she will enjoy them in bloom in May. We will meet with her urology team to see about better managing her urinary system challenges. In addition, the CT scan revealed fluid build up in her lungs which is being treated with antibiotics. Getting a handle on this should help her energy and endurance during each day. The truth is that I think she is going to feel a whole lot better and have more energy once we get some of these things under control.

This is where I tell you that we do not need tuna noodle hot-dish   We are so grateful for the LOVE and support and are committed to asking for help when we are in need...pinky swear.

Over the past week I have been reminded of our trip to Peru 4 years ago.  Each morning my Facebook account has presented photo memories of the trip, much to my delight.  This picture is one of my favorites. Look at my beautiful, adventurous, and confident wife.

The adventure continues. I am looking forward to many morning coffee dates filled with reminiscing and laughter. I am looking forward to time with the people we love. I am looking forward to publishing her latest book.  And, as has been true since this love story began, I am committed to running side by side to the finish line.  

This is where I tell you that these have been hard days for my wyf and her wyf. It is hard to turn this corner.  I hate it. My eyes are sore and my heart hurts a whole lot, as it should.

I don't quite know how to express my heart...so I will let this little guy do it for me...

I will post again once we know more.  In the meantime, pray for my sweet Gin.

Love,

Kir