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

a long overdue update...

It has been months and months. I have done a lousy job of posting here. OY.

Let me back up a little and then give a current update.

In early June, Gin was feeling significant fatigue and as a team we decided to stop chemo for the summer months and give Gin a break. This was a unanimous decision that included support from her oncologist.

During this break Gin gained energy and the fatigue and daily naps lessened significantly. Felt good :). She got into her garden and we took a trip to Minnesota's North Shore for a week of writing, fishing and relaxation.

After about 6 weeks of break (late July) Gin started noticing some symptom changes.  Pain was increasing. We returned to Mayo and during that, now 7 week break, the tumor had grown. Gin decided to get back on chemo immediately and the Pain Team made adjustments to her pain pump. My Gin is determined to fight :). As a result, fatigue has returned and in the past weeks, concern over new symptoms has grown.

Yesterday we visited with Ginny's oncologist. She decided to go forward with her scheduled chemo treatment, not wanting to give up on it yet. At the same time, we need to take another look at what is going on.  So on October 13th, Gin will have a CT scan. Typically, the scan is limited to shots of her abdomen. On the 13th the scan will also include her chest. 

You may ask why we are waiting until the 13th.  The writer is going to spend this next week with one of our greatest loves in life, Kris Wee.  Kris returned to Minnesota this summer and Gin had a writing week already scheduled.  She feels she is able to get more done on the book when she is away from home. So Sunday I will take her to Stillwater.  This pleases me and I am jealous.  I can't imagine getting to spend 5 days with Kris Wee.  There is such love and grace there.

Okay, back to the stuff of life with cancer...

Gin continues to meet the daily challenges of her nephrostomy bag and her "systems" that are unpredictable with grace. She drives, makes coffee and lunch dates with friends,  attends her gentle yoga class and is working on her book. She moves heaven and earth to get to her Saturday meditation group and church.  She has also joined a music group that shares music each Sunday morning called the Congo Jam.

I am amazed at her resilience and her determination to live her life. She does this all with such courage and 97.5% of the time my beautiful wife is cheerful.  

Thank you for your ongoing love and support. We will meet with the Oncology Team on Oct 17th for results. I will make every effort to post an update here once we know more.  

Kir

Springtime is Here

Spring is here and we are grateful.  Since our last post two months ago, much has happened.  I have taken on the gardening this year so that Ginny can spend her energy in other ways.  I was not sure how I would like it but I am in love and feeling success with Gin's guidance.

I just posted final grades for my classes and so summer is officially here.  I purchased a trailer a couple of weeks ago to haul my CanAm.  This week has been full with customizing the trailer for hauling and camping.   We have also been busy planting annuals now that the tulips are done doing their thing.

I have also invested time in adding bird feeders to the yard with hopes of drawing more variety to the garden.  In the process I have had to battle with the squirrels.  After much frustration and a "never give up spirit" I have indeed won the war.  We have been enjoying cardinals. a variety of nuthatches, orioles, woodpeckers, grosbeaks and many others...I have documented 19 different species at the feeders.

I feel like there really isn't a lot to say on the Ginny front.  We continue to live one day at a time.  Ginny has more good days than bad.  She is still having chemotherapy every three weeks.  We will know more in June about how that is working.  The nephrostomy bag is a God send, giving Ginny greater independence.  She continues to struggle with digestion issues and fatigue.  That being said she is still finding ways to keep busy and is still attending many weekly events and activities.

I think the best way to fill you in on Spring here is to let you see it...

This is Isis - she walks.  This Walking Iris blooms twice a year for ONE day.  I was able to drink coffee and watch her do her thing last week. It took about an hour.  So blessed to have had the time to experience this.

We are sharing space on our patio with a family of robins.  We have been watching their family grow.

There is enormous joy in the simple pleasures as you can see.  Next week we are going to kick it up a notch and go to Chicago for a couple of days.  We will visit with Ginny's friend Lan, hit some favorite restaraunts and see Hamilton.  We are both looking forward to the show.

Mid summer we will spend a week on Lake Superior's Northshore and at some point my sister and her kiddos will visit.  Much to look forward too.  

We will be in touch sooner than later - I PROMISE.

Love
Kir

Happy Birthday Virginia

We had an AMAZING day. 

I asked the Birthday Gal to do some writing for the Celebration Blog!

Ginny:

Yes, my 80th was the best birthday ever.   It began two days early with a Saturday afternoon open-house reception at the Austin ArtWorks Center, organized by my spouse Kirsten, the quintessential event-planner, and attended, we think, by about a hundred people (fortunately, not all at once).  The table, with 200 mini cupcakes in four flavors, and the decorations were perfect.   I felt physically the best I've felt in a year, painfree and spunky, thanks to some recent procedures at the Mayo Clinic and the prayers of many.  

Austin ArtWorks Center was a PERFECT location. 

The current exhibition was art done by area children.

CUPCAKES

My brother Dan flew up from Roanoke, VA, brother John and wife Deb flew over from near Boise, ID, niece Maren flew here from Baltimore, one friend flew up from Tampa/St.Petersburg, FL, another from Fort Collins, CO, and others drove here from the Cities, Mankato, Owatonna and, yes, Blooming Prairie!  

Kir and Dan

John and Deb

Friend Rose from Florida

Andrea from Colorado

There were email good wishes from friends in Germany, Denmark, Italy, Russia and Japan and from friends in different parts of the US.  The majority, of course, live in Austin and represent different aspects of my current and former life. What a panorama, I thought, as I looked around and identified the contexts and time periods associated with each person there.  

Champagne and toasts at 2:00.  Kirsten gave a lovely tribute, followed by dear friend Jocelyn and my brother Dan and Rochester friend Libby, with whom I did dog-sharing for 22 years, and then it was my turn.  I said I was glad to be alive for this event.  Usually, a person has to die before this many people gather in one place and say nice things about him or her. 

Kir's Toast

When we began our journey together in 2006, you said that you would not reach 80.  “I don’t want to get that old”. When the cancer returned you were convinced that that prediction would be true.  Well…you were wrong and I am glad. I know that I only represent the last 10 of these 80 years, but I like to think that I am part of some of the best of those years.  One of my greatest “lovelights” over these years is a culmination of travel memories.  We explored 17 countries together in the past decade.  SO many clear “snapshots” in my mind…the three-toed sloth that peed on you in the Amazon, café au late and crepes in the streets of Paris, gatherings with good friends and great food in Germany, the flooded streets of Venice and with you traveling piggyback, the sound of the water hitting the Nice shoreline under the night sky and the reflection of the city lights and experiencing the enchanting call to prayer our first morning in Istanbul together.  There are so many things about our life together that I cherish. These years will be ones that I look back on with such joy and such love. Thank you for loving me so well and for allowing me to love you. Here’s to my beautiful, charming, quirky, tender-hearted, generous, reptile loving 3^rd grade joke telling wife.  With a love that knows no bounds…Happy Birthday Sweet Ginny.

 Wyf 

 Cheers to his Sister (Dan)

Virginia and Libby

 Gal pals - Kir, Jocelyn and Gin

 Cheers

The bonus: Eszter Baràti, a cellist with the Budapest Symphony in Hungary and here for a limited time with her husband, brought her cello and asked if she could "play Virginia a birthday gift", whereupon she sat down, took up her instrument and played a hauntingly beautiful piece by Bach. 

It was March birthday Sunday after church (First Congregational) the next day...with turtle cheesecake, a big sheetcake and fruit.  On Monday, my very birthday, I went to a funeral.  More cake.  And finally, Kirsten and I opened all the cards made a list of birthday donations to the ArtWorks Center and the Mower County Humane Society.  I unwrapped some gifts and photographed the floating balloons and bouquets, which were making the house look ready for yet another party.

Now, nearly two weeks after my three-day birthday, I am still smiling.  I am content.  Still feeling the best in a year.  Comfortable in my new age and, most important of all, grateful for my family and my friends.  

 Greeting Friends

Gin's niece Maren and friend Brady.

 Friend and former student Teresa

 Kelly and Toni love the "Gin Blossom"

There were 238 photos taken during the day.  Wish we could share them all.  Such a great day, "love lights" galore.

Kir:

It was a lovely day and Ginny was thrilled as you have read.  From a medical standpoint, Ginny is doing amazingly well.  The removal of the stent and the insertion of the nephrostomy tube in the right kidney has been a game changer.  We did not realize how much of the pain and discomfort was stent, bladder and kidney related.  She has declared that she has not felt this good in months and months and months. This has been so good to hear.  She is still receiving pain meds via the pain pump but has not taken an oral pain med to augment the pump in 5 weeks.  This is truly amazing and is an indication that something is changing. Our Oncologist is hopeful that it is a response to the chemo.  Ginny will have a CT scan April 13th to take a look.  We are looking forward to getting a look!

The daily challenges are still indeed challenges but Ginny rolls with it and I continue to be amazed at her cheerfulness in all this.  She is an example of courage each day.

There is much laughter and straight up joy at home these days.  I have adjusted to my new work (or lack of work during the day) schedule and we are taking advantage of the time together.  Morning coffee continues to be sacred time.  We are talking about travel again and have booked a week-long vacation in Northern Minnesota on Lake Superior in July.  

I am writing from sunny California this morning.  Ginny encouraged me to plan a get-a-way with my sister and her family and friend Sue (she came to us for Christmas this past year).  I have hesitated to plan such travel with all going on, but Gin pushed me out the door.  I am very grateful and her feeling better made leaving a little bit easier.  Word from home is good and Ginny is having visits daily from a close friend who is making the daily dressing changes to that new neph tube.

Here is a pic from Disney.  Dustin and Jayme and I are the screamers.  Erika and Chris are pretty chill.

Love

Kir & Gin

30 Lashes with a Wet Noodle

My "funny" and charming father would write notes excusing me from school or explaining an absence with ridiculous "please forgive her" instructions like, "please forgive Kirsten's behavior and feel free to administer 30 lashes with a wet noodle as punishment."  You can imagine how that went over with a 15-year-old Kirsten who had to present such a note to her teacher or principal.

Anyway, I am feeling like I am in need of forgiveness for leaving you all hanging so long without a post.

UPDATE:

It has been an interesting month.  Since I last posted, Ginny made the decision to more aggressively address her urinary system challenges.  This decision was almost made for her as her right ureter has been unhappy for months and the presence of a stent there has become more and more difficult for Ginny's body to tolerate (painful and increasing bleeding).  The solution suggested and ultimately completed, was the removal of the stent and the insertion of a nephrostomy tube (a direct line and drainage system in Ginny's right kidney).  This supports the kidney and the ureter is now free to rest. As reminder - the stent was placed initially because the "bastard tumor" has formed around the right ureter and the stent kept it open.  The nephrostomy procedure was complete Monday March 6th.   She spent the night at Mayo and is now home.

Sooooo this is a lifestyle change for her.  Although small, it will require daily attention from nurse Kirsten :)

For those of you who are curious...

The tube actually comes out of her back so she is unable to do the site maintenance on her own.  Some of you are asking yourselves how can she possibly sit or sleep?  Well, as is her wonder woman way, just fine.  She slept on her back last night.

On another note, Gin is experiencing less pain and discomfort in her other "disposal" system.  It seems the pain pump is doing a good job of controlling the pain there.  Gin has not needed oral meds to supplement the pump in over two weeks.  She wonders if the tumor is shrinking as a result of this "wicked" chemo - MAY IT BE SO!

THE GOOD STUFF...

On Saturday March 11th we are celebrating Ginny's 80th Birthday.  I know, I know...80?  Yup, our Gin has aged well :)

Those of you who are local, feel free to join us.  Family and friends are flying in from all corners of the country and we are looking forward to celebrating my incredible wyf.

March 11th
1-4 pm
Toasting at 2 PM
Austin ArtWorks Center in Downtown Austin

She is asking that folks not bring gifts but she would enjoy a card.  For those who would like to do more, Ginny suggests donations to the Mower County Humane Society or the Austin ArtWorks Center.

I will post pics after the event, I PROMISE.

Love
Kir

A better week...

I realized this morning that it has been almost 12 days since I last posted.  In that time I finished up my work at AHS and have had one full week "at home".

It has been strange to not get up every morning and go to my REACH kids.  I am missing them very much.  On the other hand, I have enjoyed slow mornings with Gin.  I have loved getting back into the pool, a feel good for sure.

On the Gin front, things are okay.  She has had a good week.  She managed the days following chemo well.  There were a few side effects but she rolled with it.  Now that her stent is working better and her kidney is not blocked, the pain pump is working well.  She is managing her oral pain meds and her systems are working (they are still a challenge to manage of course).  She is out and about doing her thing.

Her next round of chemo is scheduled for Feb 15th.

Not a lot to share...Yay!

Love Kir

Dukes Up...

OUR LIFE UPDATE:
Over the past weeks Ginny has been working with Gal Pal Jocelyn to complete the manuscript for Ginny's latest writing project.  We are now working with Byron (Jocelyn's Husband) the artist on the illustrations for the book.  This is an exciting time for Gin as seeing this project complete is high on her "living list".  Stay tuned...we are expecting publication later in the spring.

OKAY DUKES UP...

    

On Monday Ginny went in for her 10th stent to keep her right ureter open and her right kidney functioning.  When they got in there, her kidney was in distress as the stent was clogged.  Once the old stent was removed and the new one placed her kidney danced the hokey pokey with relief.

She will not wait as long for her next replacement (2 months).

As part of the monday procedure, medical staff took a good look at her bladder from the inside to see if that tumor is indeed penetrating into the bladder.  Two biopsies were taken from two questionable areas.  We will get results at the end of this week.

Today we are in Rochester for Ginny's first round of Doxil cocktail, a chemo that she has not yet experienced.  There are many possible side effects with this one and we are hoping she tolerates it well.

As I sit here, watching her drift in and out of nap mode, I am acutely aware of how amazed I am by her strength.  She walks in such grace.  I am certain that I would not be so gracious if in her shoes.

One of the things we have been talking about is the legacy or the thing people will remember most about her.  She has taken this very seriously in the past couple of years.  She believes that it is her mission to create memorable meaningful moments with people, both those she knows as well as strangers.  Ginny seeks out opportunities each day to engage with others, to share cheer.

At a retreat this past weekend she was asked to identify a word to live by and to help her grow.  Her word?  SHINE.  This is not a surprise to those of us who know and love her, but having a word to focus on and to meditate on pleases her.  So our sweet Gin is stepping up her "shine".  Hang on world, this hilarious, quirky, intelligent, kind woman is on a roll and is determined to make as big an impact as she can creating  memorable bright moments.

Shine On :)
Kir

It Seems I Married Rocky Balboa

As promised in past posts we want to start with the good in life.  I will admit this is a little challenging this week, not so much going on by way rainbows and butterflies. I will say that these past weeks have been wonderful for us as a couple.  We are deeply bonded and the moments together are sweet and tender.  We are still finding time to play and tease.  There are lots of "I love yous" and lots of singing.  Yup singing.  I sing to Ginny at some point everyday.  The quality is debatable as often is it sheer silliness, but those silly songs are part of the cheer we are seeking in the moment to moment.

Gin is still her active self.  She is driving.  She is getting herself to her favorite weekly events.  She is taking the dogs to the park.  She is writing.  All of these things just take a little more time and planning.   Life is happening!

Before I get to the medical info, we wanted to share that I have decided to adjust my working schedule.  For the past two years I have been working almost two full time jobs.  I have been teaching for Riverland and St. Cloud Technical and Community College as well as working days at Austin High School with the REACH program.  REACH is a program I started with a colleague 3 years ago.

I truly love my work but I am tired. With all that has been happening with Gin, I can no longer keep up with the responsibility and pace of teaching and REACH.  Last week I resigned my position in REACH.  This has been a very difficult decision.  I have grieved this decision but know that it is what is best for me and Gin but more importantly for my kids in REACH.  They need consistent support and the unknowns of Gin's health and increased medical appointments made this difficult.  So, my last day is January 27th.  I will volunteer some time in the REACH classroom as I have made commitments to kids that I want to keep and I have applied for a sub license so I can help the team out when they need.


Now for the update.

1) The tumor has grown.  It is slow growth but it is growth.  So the "chemo pill" is not doing what we need it to do.

2) Ginny's pain pump has been adjusted so fingered crossed.

3) Gin is experiencing  more and more complications with her urinary system.  There are a couple explanations.  It could be stent related, with infection or it may be that the tumor is penetrating into the bladder.  Gin is having a new stent placed on January 23rd and at that time they will look at the lining of the bladder to confirm this.  The radiologist felt like this was a likely scenario given the placement of the tumor.  So we will see.  In the meantime, Gin will start antibiotics to address possible infection.

4) After all the info was presented, we began to look at the options.  There are two types of Chemo.  One that Gin has used before (not likely to do much) and one that is more aggressive (she turned this down before).  This is the Rocky Balboa part.  Gin has chosen the more aggressive chemo.  There are likely more side-effects and will be harder on her but it is something this bastard tumor has not seen before and maybe it will catch it off guard.  She is not willing to give up yet!  She will begin after the new stent is placed.  I expect Jan 25 or 26th.


Will update once we know more.


So as part of our LIVING we have started planning a 80th Birthday Party for Gin.  Gin is enjoying the planning of this and looks forward to visiting with friends and family.

March 11th  (1-4 pm)

Open House

Toasting at 2 pm

Austin ArtWorks Center

300 North Main Street

Austin, MN

No gifts please.  Donations can be made to the ArtWorks Center OR the Mower County Humane Society if desired.

Peace.
Kir