Chemo Underway

The super human Ginny started her oral chemotherapy Monday morning. She seems to be tolerating it well.

The challenge is pain. She is struggling to get her pain managed. She is needing to augment her pump with oral  meds. We are tracking her pain and meds and Friday we will return to Mayo for a Pain Team meeting and hopefully we will get the pump adjusted.

I have received messages from folks saying things like "she doesn't look sick."  She does look great, but she is sick.  She is maintaining her daily routines and yes she is keeping lunch dates and planned activities, BUT it is a challenge.  Activity is a sign of LIFE and she is LIVING!

I will post again Friday after our appointments.

In the meantime...pray for her "systems" and the pain.

love
Kir

Saturday Morning

Morning.  I want to apologize for taking a couple of days with this update.  Yesterday was a long day.

Wednesday the pain pump went in.  She spent Wednesday night at Methodist Hospital in Rochester and she was released Thursday afternoon.

The meds originally placed in the pump ended up being too strong for our Ginny so the Pain Team decided to have us come back in on Friday to change out the meds.

Thursday night went well.  The pups were pleased to have their Mama G home.

The pump is about the size of a hockey puck.  It is under the skin on Gin's left side.  It will take some getting used to for sure.  The team said that her slight body made for challenging placement but feel good about where it is.  

Friday morning we returned to the Pain Clinic to have the meds changed out.  It was an amazing experience.  The process and the technology is outrageous and the curious Ginny and I were fascinated by it all.  It was a long day but we believe all is right with the pump and Ginny's pain seems to be under control.

So what's next?  Chemo.

Monday morning Gin will begin taking a daily oral chemo dose.  She wants the flexibility it offers.  

We NEED this it stop the tumor from growing further.  Even more now that the stent was not able to be placed in the colon last week.  If it does not work we will switch to an IV weekly chemo.

For those of you interested in understanding her anatomy and this tumor...

The tumor surrounds her left ureter, thus the stent in her ureter to keep it open.  With the latest growth it is also pressing on a section of her colon.  If the tumor continues to grow it will hinder her movement and we ALL need to be able to "move".  Also, if we are not able to halt the growth and control the cancer, there is the risk of it spreading.  UGHHHH!

So Saturday morning  has arrived.  Ginny is off to her weekly meditation group and lunch with friends. She is super human :)

I am enjoying a little down time and my coffee.  Has been quite a ride this week and am so grateful for rest.

THANK YOU for all the love and support.  THANK YOU for all of the messages and offers to help. We WILL reach out as we need.  Keep praying.

Kir

Pain Pump

We checked into Mayo Gonda 15 at 10 am this morning.  After a late morning of consultations and final conversations with Doctors and other specialists she entered the procedure suite at 1:40 pm.  She was out just before 4:00 pm.  Everything went well.  She had an intrathecal pain pump put in.

I am home tonight and will return in the morning.  If all goes well, she will be released mid afternoon tomorrow.  We will return to Mayo Friday for pump follow-ups.

We are expecting that Gin will start chemo therapy next week sometime.  They want to give her a few days to heal and adjust to the pain pump before they add another level of treatment.

She was her funny and charming self today.  Lots of smiles and great storytelling.  She loves to meet new people.

We will hope for a quiet weekend and next week we will put the those dukes up and get after that cancer.

Love
Kir

Stent a No Go

The Mayo docs were not able to place the stent in Ginny's colon today.  There is just too much scar tissue and "kinks" in her plumbing.  We are turning our attention to Wednesday and the pain pump.  Next week she will start chemo.

As for the plumbing, she will continue to take her "movement" meds and we will hope the chemo stops the bastard tumor.  Eventually a colostomy will have to be attempted.  This is a scary and difficult option.  The doc today said he does not envy the doc that will have to tackle her colostomy.  Argh!

Forward we go.

Kir

No Tater-Tot Hot-Dish Please.

Over the past year and a half, we have been very quiet about Ginny’s health.  In February and March 2015, Ginny underwent 25 rounds of radiation to see if we could put that “bastard tumor” in its place.  In this past 18-months we have enjoyed a cancer free season.  There have been challenges in the past year however.  The radiation, although effective in shrinking the tumor, left a wake of destruction in Ginny’s “innards”.   The side effects have been difficult and very inconvenient for sweet Gin.  She has put up with much and I have been amazed at her determination to not let it get in her way.

Four weeks ago, the discomfort felt daily shifted from distraction to pain.  The never complaining Gin started becoming more and more vocal and expressed that she was not able to stand it any longer. 

Two weeks ago we began doctoring at Mayo again.  We have been working with several departments and there is a great deal going on.

1) We need to control Ginny’s pain.

2) We need to keep her kidneys functioning and her colon working.

Let’s start with the stents.  Gin has had 8 stents placed in her ureter over the past 2 years (they have a 3 month shelf life).  These stents have kept her right ureter open, keeping her right kidney alive and the Gin peeing.

Ginny now needs a stent placed in her colon.  The radiation obliterated her colon and the already battered colon/intestine (previous bouts with cancer) is a maze of scar tissue.  A stent is needed to help her with proper function and to help prevent bowel obstructions, which is a relatively common occurrence for Gin.

Now for the pain…we have elected to have a pain pump placed.  Gin is requiring daily pain meds and a pump will provide more accurately placed medication and is easier on her systems as it does not have to be digested and make its way through other systems before getting to the site of pain.  It will be placed under the skin (her left front side) and a tube will tunnel under the skin to her back.  The tube will be threaded along side the spinal column and placed precisely at the point where her pain “receptors” send the signal up her spine to her brain to let her brain know she is in pain.  The pump with provide very controlled drip.

All of this is necessary because in the past month the bastard tumor has woken up.  Last week Gin had an MRI and we were told Tuesday that the tumor is growing and growing quickly.  It is larger than it was when we first discovered it almost 7 years ago.  It has been a difficult week as we, more importantly she,  believes the writing is on the wall. 

Tomorrow (Monday 10/24) surgeons will attempt to place a stent in the colon.  This will be a challenge but we all agree this is the best place to start.

Wednesday 10/26 Gin will have the pain pump put in.  This is a 2-3 day procedure.  The surgery is quick and relatively routine.  The hospital stay is for the pain folks to monitor Gin and establish her pain control needs.

The following week Ginny will begin a round of oral chemo therapy in the form of a daily pill.  The hope is that this will keep the tumor from growing any more and give Gin more time to complete many projects she is longing to get finished. 

Doctors were clear that the chemo options left to us are not expected to shrink the tumor, but hopefully control the growth.  The team has said we have a couple of options with chemo.  Each treatment is expected to give 6-9 months of time if effective.  This puts us on a 12-18 month timeline.   I hesitate to type this as we ALL know that these timelines are guesses and doctors have been wrong about Ginny’s life and death timeline in the past.  At the same time, we hear it and want to make sure we are ready in the event they are right.

So…

No tater tot hot-dish please.  We are busy living at 1818 6^th Avenue NE.  We are loving fiercely and enjoying these fall days.  We are looking forward to snowy days and are talking about what to plant in the garden next spring.

We want those we love to know, but are not ready to sound the alarm to the masses. 

We covet your prayer in the days ahead.

Kir & Gin