1/14/19 Monday update

OK, here’s the short version:  she continues to decline.  She is quite weak and has been sleeping most of the day. Yesterday, she had a few visitors. Her Bible study came by and she even took Communion.  I wasn’t home for that, as I was at church getting the “real deal”.  She has been wanting to go to bed at 4:00 PM, but we have been trying to get her to stay up till 7:00.  Yesterday, we figured, “what the heck?” and let her have her 4:00 PM bedtime.  When she sleeps, she is so peaceful.  

Today, we will be having a home health nurse come by to assess her.  Not a whole lot else on the books today.  

However, speaking of church, I was struck by one of the Bible passages that was read.  Here it is, from Isaiah 43:

“Do not fear, for I have redeemed you; 

I have summoned you by name; you are mine.

² When you pass through the waters,

I will be with you;

and when you pass through the rivers, 

they will not sweep over you. 

When you walk through the fire,

you will not be burned; 

the flames will not set you ablaze.

³ For I am the Lord your God,

the Holy One of Israel, your Savior;

I give Egypt for your ransom, 

Cushand Seba in your stead.

⁴ Since you are precious and honored in my sight, 

and because I love you, 

I will give people in exchange for you, 

nations in exchange for your life. 

⁵ Do not be afraid,for I am with you;

            I will bring your children from the east 

            and gather you from the west.

I love the imagery of passing through the waters and not being swept away by the rivers.

And that’s the latest update.  However, if you are curious about what’s going on in Steve’s head, here is what I wrote in my journal this morning (aside: for some reason, I started keeping a journal around age 14 and haven’t been able to kick the habit ever since).

She is declining so rapidly.  Every day I wake up and think that today will be the day she sees Jesus face to face.  It seems even more so the past few days.  She literally slept 23 hours yesterday.  Hospice got started and they have been helpful.  We have a nurse coming today.  I just want her to be at peace.  I don’t know that I agree with that statement, “death, where is they sting?”. It stings oh so much.  I do agree with the second part: “grave, where is they victory?”.  So comforting to know that she will be in paradise and rid of her pain and suffering. The Bible only has images of heaven, metaphors.  The only one who saw heaven for himself was Paul and it was too wonderful to even talk about.  Boy, it’s going to be good!  I sometimes daydream about what it may be like knowing full well that it won’t be anything like that, only better.  I think that I’ll get to scuba dive crystal clear waters but won’t need a scuba tank in an ocean where the animals abound and are at peace.  I imagine riding a massive wave on a surfboard and doing it flawlessly, of camping out under the Northern Lights, of having eternity to read all the books I ever wanted to, to play musical instruments, to sit by cozy hearths with a good community of friends.  Probably heaven won’t be like that, but it will be far better.  Yes, I know.  The big thing in heaven is to see God, Jesus.  But it’s easier for me to imagine the ultimate dive on a coral reef than what God will be like.  The picture of worshipping God forever immediately makes me think of all the saints in white robes, not interacting with one another but looking at God in some giant room filled with light.  Can’t get that picture out of my mind, but I know that’s not heaven—that’s the Moonies. The coral reefs have the stamp of their Creator on them, so I’ll stick with them.  And that’s a great solace for me as I look at losing her, knowing that she has that in front of her.

            I’m clearly already mourning her loss.  She is but a shell of what she was before.  With each day, a small piece of her is gone.  No more walks, long talks, dates.  They’re already history, but I am so thankful for my memories, pictures, and my children in whom her spirit lives on.

1/12/19 Signed up for hospice

Things have been pretty quiet around here today.  We were blessed that my brother Paul and his wife Heidi made a special trip in from "the boonies" (Poulsbo) to bring my mother over for a visit.  She lives in Redmond, so there was a fair bit of driving on their part.  Thanks, guys!

As for Gabrielle, she has been having a mellow, mostly sleepy, day around the house.  She ate a little breakfast before my mom's visit.  Afterwards, we went for a short walk along the Edmonds waterfront by the marina:  

I left to take my mom home, and the rest of the gang made a bee line for Anthony's where Gabrielle ordered a salad to go.  Nothing like Anthony's to get the salivary juices flowing!

Pain continues to be an issue, but we are trying to stay on top of it.  I have told her many times to let us know if she is in pain, and she replied that sometimes, she just doesn't think of it.  Talk about stoic!

We have indeed asked the hospice folks to come around and they will be here tomorrow for an "intake" and assessment of the situation.  We are all at peace with this decision, though that doesn't make it any easier to see her health slowly slip away.  But she is so strong and looks forward to an eternity without pain.  She told Renee yesterday that she could feels the arms of Jesus drawing her closer. 

I have asked her is she wanted me to read any e-mails or texts to her, and she said "not now".  She is in a pensive and reflective mood much of the time.  I will wait and read them to her later.  Feel free to continue to text or e-mail her.  We will get around to reading them to her when she is in the mood.

One problem with napping during the day, is that time gets a little confused.  We were downstairs watching TV and Gabrielle said she was ready for bed, though it was only 3:50.  We will try and keep her occupied till 7:00.  That appears to be her new bedtime.

Not much else to report on this end, but I know that she has many friends who love her dearly and I want to keep you in the loop as much as possible.  

Blessings all around!

1/11/19 Mellow day today

Things have been pretty quiet around here today.  We were blessed that my brother Paul and his wife Heidi made a special trip in from "the boonies" (Poulsbo) to bring my mother over for a visit.  She lives in Redmond, so there was a fair bit of driving on their part.  Thanks, guys!

As for Gabrielle, she has been having a mellow, mostly sleepy, day around the house.  She ate a little breakfast before my mom's visit.  Afterwards, we went for a short walk along the Edmonds waterfront by the marina:  

I left to take my mom home, and the rest of the gang made a bee line for Anthony's where Gabrielle ordered a salad to go.  Nothing like Anthony's to get the salivary juices flowing!

Pain continues to be an issue, but we are trying to stay on top of it.  I have told her many times to let us know if she is in pain, and she replied that sometimes, she just doesn't think of it.  Talk about stoic!

We have indeed asked the hospice folks to come around and they will be here tomorrow for an "intake" and assessment of the situation.  We are all at peace with this decision, though that doesn't make it any easier to see her health slowly slip away.  But she is so strong and looks forward to an eternity without pain.  She told Renee yesterday that she could feels the arms of Jesus drawing her closer. 

I have asked her is she wanted me to read any e-mails or texts to her, and she said "not now".  She is in a pensive and reflective mood much of the time.  I will wait and read them to her later.  Feel free to continue to text or e-mail her.  We will get around to reading them to her when she is in the mood.

One problem with napping during the day, is that time gets a little confused.  We were downstairs watching TV and Gabrielle said she was ready for bed, though it was only 3:50.  We will try and keep her occupied till 7:00.  That appears to be her new bedtime.

Not much else to report on this end, but I know that she has many friends who love her dearly and I want to keep you in the loop as much as possible.  

Blessings all around!

1/10/19 Chemo is a "no go"

We got up quite early in order to make an 8:00 AM lab draw, then waited around till chemo appointment at 9:30.  Her nurse came out and got her all situated in the infusion bay and said that we were just waiting on the labs.  Fifteen minutes later, she came back and said that Gabrielle needed to go to the ER due to high potassium.  Sodium remains quite low as well.

What followed was a long discussion with her nurse and the gyn-onc fellow over the pros and cons of another ER trip.  Gabrielle got a pained look on her face at the thought of going to the ER or being admitted to the hospital and said repeatedly that she just wanted to go back home.  As such, we made a beeline out of there and plunked her down on the couch, where she is resting peacefully.  Though at this moment, Daniel is getting her propped up and is about to coax her into eating a little pho from our favorite place on Aurora.  Oh, and he got her some tater tots as well!  I may have to dig into those!

We have set the wheels in motion for hospice with a focus on keeping her as comfortable as possible.  She has told me many times over the years that when the days get miserable and are to be endured, then quality of life is pretty low.  I am sad to say that she (we) is at that stage.  Has said she is ready to leave this earth and "go home".  I am so glad that she has an eternal home to go to.  We want to make the trip as comfortable as possible.  

Yes, it looks like Gabrielle is on her "bell lap", which she wrote about a while back.  Nobody has fought longer, harder or with more determination than Gabrielle.  She continues to be thankful for little things and never gets annoyed (except when I hover).  She's a real trooper.  No wonder she has so many friends.

As always, thanks for your prayers, support and words of encouragement.

1/9/19 Six year anniversary today!!

Today marks six years since Gabrielle was diagnosed.  At that time, the five year survival was 20% tops.  She's beaten that!  Such a strong, strong fighter.  Nobody has been fighting harder than her.  So proud of her.

I just got off the phone with the scheduler, and they have her slotted to restart the Taxol tomorrow morning.  We are really hoping and praying that it will offer some help.  I don't think it would be helpful to try an unknown drug at this time, and Taxol has improved things in the past, so we'll see.

As for how she's doing, currently she's snoozing on the couch.  She got up at 7:00, which is about three hours early for her.  Was having abdominal cramps and pain.  Was also chilled.  She headed down to the living room where she planted herself on the couch with a heating pad and her "bucky heart" which is something filled with buckwheat that she nukes to keep things warm.  She has also had a couple of pain pills.  She has not had any interest in breakfast yet.

I am happy to report that for the past couple of days, she has been pretty "with it".  Enjoys reading texts and having e-mails read to her.  She is quite shaky with her fingers, so finds it hard to answer back.  The cough is a touch better.  Small things to be thankful for.

Oh, and just for fun, I thought I would toss in a picture of Gabrielle and Renee about 20 years ago.  Here they are, standing on the deck of our hotel on Maui, where we went for one of my "business trips".  

1/8/19 A slight rally

First of all, thanks to so many of you who have offered encouragement through your words and actions.  Too many to list, but they do indeed help us all remember that we are surrounded by many people who love and care for Gabrielle (and the rest of us).  I am sorry if I don't get around to thanking each of you, but I am very grateful for the outpouring of support.

As for Gabrielle, she has done a little better the past couple of days.  Has been able to have a couple of conversations, and even wanted to try her hand at Scrabble last night, but she was clearly off her game.  Her first word only got her six points, which would be like Jesse Owens running the 100 in 30 seconds (aside: I have started really enjoying making analogies to "ancient" history as it's fun to see the complete blank looks on millennials' faces, like when I said I am only four days younger than Bo Derek).  But Gabrielle's hands were quite shaky and we ended up stopping after two turns.  

As for her appetite, she ate a little more, but still not much.  Cough persists.  Is still sleeping now.  I expect she will get up in an hour.  Yesterday, she actually got up on her own, walked past Renee who was sound asleep on the floor next to her and was at the top of the stairs before we could help her.  She hates being helped around, but understands that we do it to keep her safe.  

The biggest news is that she has asked us to check with her oncologist about going back on the Taxol.  We understand that it has failed several times before, but the goal at this stage is to decrease the "tumor burden".  Who knows? It just might help.  Lately, it's the only chemo drug that has done any good at all.  We sent e-mails to her care team at the UW and they have said that they are willing to try it.  They are looking into scheduling it now.  It's clearly well beyond a Hail Mary pass.  We all have our eyes open and very realistic expectations.  But Gabrielle is not ready to sit back and go to "comfort care" just yet.  I both admire her fighting spirit, and am worried about its effects on her.  

At this point, we don't even know if her labs will be good enough to get the Taxol.  But, if so, then she may get a dose later this week.  As for me, my big goal is for her to have the best quality of life she can with the remaining time she has with us, whatever that entails.  If Taxol can help her achieve that goal, then bring it on!  If not, then we will be accepting of that.

Update.  She just got up and has had a few sips of a smoothie that Daniel made and is asking for cheese and tomato on toast.  Right now, she is reading some texts on her phone.  She likes doing that.  May not necessarily be able to respond, but she is encouraged by the kind and supportive messages.

1/6/19 Sunday morning update

It’s just after 6:30 and I’ll be heading out the door to go to work soon.  It’s hard to even think about work, but I need to go in for a variety of reasons.  For one, I want to be able to give the kids time alone with their mom.  She doesn’t need three people hovering over her watching her sleep, though she does like it when I am around.  I leave knowing she is in good hands.  Daniel spent the night on the floor next to her, and Renee will show up in a couple of hours.  

But I wanted to give an update before I dash off. Yesterday, Gabrielle was pretty sleepy and “out of it” for much of the day.  She continued to cough, even after she got up and tried to move about. Extent of her activity was walking down to the basement to watch TV, then going back upstairs to “take a lap” around the main floor, then head upstairs again.  She was a little confused, which was sad to see, because the previous day, she was quite alert in the hospital and had some good conversations with nurses, doctors and us as well.

As you may suspect, there is no chore list for Gabrielle.  No riding lawn mower.  No chiding her for not getting her silly tasks done around the house.  I write things like that as a bit of a defense and to try and inject a little levity, albeit somewhat dark, into a very depressing situation.  This morning the mask is off.  The truth of the matter is that she is getting sicker by the day.  Sometimes, she will rally, but the general trend is not looking good.  We all pray for wisdom to be aggressive enough to treat correctable problems such as low sodium or dehydration, while at the same time not putting her through a series of unnecessary or even harmful interventions, trips to hospitals and the like. It’s not always easy to tell the difference on the front end.  That’s where the wisdom to know the difference part comes in.

She barely eats anything.  Yesterday’s total was a few bites of waffle and then some pineapple yogurt from Menchie’s.  She was alert enough to ask Daniel to mix it with some plain vanilla when he was getting it. Drinks a little water, but not much. She has lost a lot of weight.  You get the picture.

Yesterday, I read some Bible passages to her from Jeremiah about God taking away our mourning (31:13), selections from the Psalms about God helping us when we call out to Him, and parts of I and II Corinthians about love, keeping our treasures in jars of clay and Paul’s vision of heaven that was too wonderful to speak about.  She smiled and listened intently.  Daniel played some Michael Card selections for her while he gave her a foot massage as Renee and I looked on, each working our own crossword puzzles (I finished mine, but I had Friday’s and she had Saturday’s). 

I just popped up to check on her: she was doing a lot of coughing, so I gave her a dose of cough syrup, kissed her goodbye and told her I’d be back later this afternoon.  She smiled.