The "H" Word

Here are the update videos from the past few days. For those of you unable to view the videos, the biggest change or update is that Ginny is receiving hospice care.  The decision was made during her last hospital stay. Accepting the helps provided by this system of care has been difficult, but the benefits and the services offered are indeed helpful.

Gin is still getting out and about.  She is no longer driving but continues to be very social.

The discovery and realities of living with a fractured pelvis have added to the daily challenges she faces and she is not as ambulatory.

All this being said, she is still cheerful.  She continues to work on her next book and she is determined to continue leaving her mark on the world through her interactions with everyone she sees each day.

Feel free to call or email her.  She is really enjoying connecting with her "peeps".

A Little Birthday Coffee...

Below is the link to the latest Episode of Morning Brew.  For those of you unable to view it, we are celebrating my birthday today.  Gin is feeling full of energy this morning.  We had a good day yesterday and am hoping for another today.



Love Kir

Settling In

We are home and settling in. Pups, Sophie and Nadou, are pleased to have the moms home. We broke out of the hospital Thursdsy afternoon. Yesterday we met with “home care/support services” to set up some helps. My sister Erika and her kiddos Jayme and Dustin arrived yesterday.  They are here for a low key weekend of visiting with the Aunties.

I know the details are skimpy this morning, but wanted you all to know that we are indeed home. I realize some of you might have more questions. I am happy to share more info if needed. Feel free  to email me or call if you have the number. We are working at establishing a routine for moving forward.

Kir
Klindbloom@gmail.com

PS: Gin was able to spend some time writing last night. This has been on hold for weeks.  It was good to see her back in the writing chair for a bit. She has book 4, well on its way :)

What a Week!

We have had quite the week. To be fair, I am not sure who knows what and so I need to back up and fill in the timeline gaps.

Last week was tough. The realities of the pain kicked in after the colostomy procedure with renewed vigor. By Thurdsay Gin was "beside herself". After consulting the Palliative and Pain teams we agreed to come in to have her pump adjusted and to revisit her pain management plan. That Friday morning visit turned into an admittance to Methodist Hospital. We are actually still in the hospital but the end of this stay is coming to a close.

Over the weekend, the Pain Team worked aggressively to get pain under control from their vantage point and they were determined to get Gin's intrathecal pain pump to work on Gin's behalf better. In addition, a Doc on the Palliative Team met with Ginny and did some sleuthing of her own and decided, based on symptoms, that Gin may have an additional form of pain that is nerve based. This pain does not always respond to the use of the pump or the meds the pump provides.  Her theory has proven to be a good one and a long lasting oral med has been added to address this pain.

On Monday, Ginny had an MRI to take a look at her abdomen.  We were surprised at some of the results.

1) The original tumor is growing once again.  Mild growth but growth.
2) A second tumor has been found.  It is small but is new since January.
3) Ginny has a fractured pelvis.  This was a surprise.  Ginny has been complaining about a "pulled muscle" over the past two weeks.  It turns out the pulled muscle is actually the fracture.

After 6 days in the hospital pain control is better.  It will never be perfect, but we have enough of a handle on it to go home.  There is nothing to do in response to the tumor growth.  The pelvic fracture will heal over time. It will take months given Gin's bones and will be painful, but it is good to know that it is there and that she is so susceptible to breakage.

We will continue to work with these teams to meet Ginny's needs and to access support for me.  We will be tapping into additional supports to assist us at home with Ginny's care.

Thanks so much to praying and loving us so fiercely.

Kir and Gin

A Bump in the Road...

On Friday Gin was re-admitted to Methodist Hospital.  We were not able to get pain under control at home.  She is okay, we just needed some help figuring out dosing in a more controlled environment.  It is Sunday morning and we are still in hospital.  We are getting to the bottom of some things and we are hopeful.  Will update again soon.

Kir

Birthday and Follow-up

We are one week from surgery.  Yesterday was a big day.  We organized our troops to get a Ginny to the Coffee House with her pals for a short celebration.  She is so pleased and thankful for the outpouring of birthday love.  After her mini party, we headed to Mayo for an afternoon of follow-up appointments, including the palliative team social worker.  I will be looking into local resources and helps to support us moving forward.   I am still off work.  Will be home through the week.  I am working to solve the puzzle of Gin’s pain . I am monitoring and documenting hourly to figure out patterns and establish correct dosage.  We are working closely with the Palliative and Pain Teams at solutions.  I think is it fair to say that pain is just going to be part of this journey. We trust that as a team we will be able to find a way to keep her writing and living on her terms for as long as is possible.

Continue to send good thoughts.

Kir
oxox

Gin is Home - Pups are Happy

I wanted to share a couple more of our recent video posts from Facebook (see below).  If you watch them in the order placed below you will get the information in time order.

For those of you unable to view the videos, Gin ins settling in to home.  She is doing more and more on her own and I am diligently documenting pan and activity to try and establish trends so that we can get her pain better managed.  I am having some success.  It has a mind of its own and so just when I think I have something figured out it responds differently than I think it should.

Overall she is on the mend.  The return of the rectal pressure and pain is a little discouraging but we are hopeful that a little time will settle things down.

Just Kir - Surgical Update

Morning Brew - Episode 6 (Gin is Home)

Home...

Morning (Saturday).  We are home from the hospital. Gin is pleased to be home and our dogs at happy to have their Mums back.

 We are struggling here this morning and are asking for prayer and good thoughts. Under all the surgery and post surgery meds, the rectal pressure pain that has been Gin’s greatest challenge these past many months was under control and masked. Yesterday she struggled ALL day with pain and pressure rated at 9/10 most of the day.  This is the same pain she was living with pre-surgery. She has resumed her pre-op pain management and was taking her extra dilaudid through the night and is sill struggling. We have been trying to let things settle with hopes that this is just post-op and that it will settle.  We all hoped the colostomy would help with pain relief.  If this persists, we will have been wrong about what causes the pain.  My non-medical thoughts are that it is indeed the tumor and the pressure and pain it causes is indeed the pressure and pain that she feels.  There is disappointment and sadness here this morning.  Having the colostomy has many other benefits, so it is not for not, but we need pain under control.  Even though the sadness and disappointment feels strong this morning, the optimism is still lingering.  Thanks for loving us so fiercely.

Kir

Day 2 Recovery Roller Coaster Has Left the Station

Good Morning.  Day 2. The ups and downs of recovery are in motion. Gin had a bit of an emotional crash last evening. Not tears but some sadness.  She pushed really hard yesterday and by evening was tired and reflective. This procedure is proving to provide relief for some of the pain.  That being said “Life is still going to be hard, I still have cancer.”  The realities of the increased care that the new system will take and a anxiety about life with all this hardware is real.  So keep praying.  Surgery was the first and highest hurdle of the race, the race is not over! Thanks for holding us up.  We are grateful.

Thursday Update

Has been a good day.  She is up and walking, eating some and her new system is starting to work. If she continues to improve without complications, I think we will be home Friday or Saturday. I apologize for the short posts.  Will post more tomorrow.

And Now...Recovery

Update 3/6 12:45 PM

Update Tuesday March 6 @ 12:45 pm

Morning Brew Episode 5 (Attitude)

Morning Brew Episode 4 (Hopes for Kir)