Saturday, August 25, 2018

8/25/18 A+ visit yesterday!!

Dear Friends and Family,

Steve here.  Yesterday was another chemo day.  We have gotten into a pretty set routine with these days.  It goes like this:  
1.  Before chemo appointment, I usually race around the house collecting things for the upcoming long day and stuff them into my backpack.  Essential items include crossword puzzle, snacks, bottled water.  I try and surreptitiously leave Scrabble out, but Gabrielle always asks for it, and “forgetting” isn’t an option, so it goes in the bag as well.
2.  I then start pestering Gabrielle that it is time to go, but she always tells me to chill, that we have plenty of time.  We usually reach a compromise on when she would like to leave and when I want to (allowing for traffic).  We then argue halfway down I-5 on which exit to take: opt for side streets or “punch it out on the main line”.  If Daniel is along, he usually chimes in with his Google Maps advice on the quickest way, which I ignore about 95% of the time (what does it know??).  
3.  Gabrielle gets her labs drawn and then kills time for an hour waiting for them to be processed, often with a walk along the Montlake Cut.
4.  Meets with either the nurse practitioner or the ob-gyn fellow to go over the labs and discuss how things are going.
5.  If all the labs look fine, then chemo is a “go” and we wait for the pharmacy to mix up the meds before it drips in.

That’s how it went yesterday, but Daniel was the one who took her while I slipped off to work.  At the visit with the nurse practitioner, Gabrielle learned that her labs were “A plus!.” Her liver tests, which had been quite elevated had all dropped to “almost normal,” and other labs looked good too.  She was quite pleased with Gabrielle’s progress and how she is feeling.  The only test that hadn’t come back was the tumor marker, CA-125, but ARNP Diane said that she would track Gabrielle down in chemo and give her the results.
As a matter of background, this was in the mid 100’s when she was diagnosed and then dropped, then rose, then rose some more.  Earlier this summer it quickly went from 400 to 800.  A few weeks back, it spiked even more ominously all the way up to over 3,300!  Not a good sign, not by a longshot. 
Midway through chemo, Diane showed up with a huge smile on her face with the news that this had dropped by over 2,000 points to just over 1,000!  What a wonderful bit of news that was!  We are all so happy that the Taxol is knocking the tumors back.
But this round of chemo is also pretty rough on her.  Hair is falling out in clumps, and as I write this, Daniel is dusting off his barber skills and finishing the job, getting rid of the wayward tufts of hair.  It is hard on her stomach as well with alternating bouts of bloating and constipation.  She still is collecting abdominal fluid and needed to go in and have it drained again this week.
But do you think all of this would slow her down?  Not a chance!  Two days ago, we went for a day trip to Whidbey Island, and she walked for an hour at a beautiful spot called Ebey’s Landing.  And in half an hour, we will leave for a wedding in the greater Portland area in which Renée is officiating.  You go, girl!
All in all, we are quite pleased with her progress, a far cry from how she was feeling just a few weeks ago.  To me, it is an answer to prayer, and the medicines too, of course.  Now, if you will excuse me, I have to go pack.  I might accidentally leave Scrabble behind.  As for the crossword puzzle, I almost have last Sunday’s NY Times done, but am stumped on: “box of 12 question marks?”: four letters: J, blank, blank, Y.  Any ideas? 

Re-charging our souls at Canon Beach!

Sunday, August 12, 2018

8/12/18 Topsy-Turvy

Dear Family and Friends,

Steve has been doing most of the blog posts as I’ve lived a topsy-turvy life this past month.  I give thanks to God and my dear husband and children who have seen me through it all.

1)  Two trips to Houston brought tons of tests and disappointment.  Yes to the first trial.  A week later, no to the first trial.  Yes to the second trial.  A week later, no to the second trial.  Home to resume care under my Seattle oncologist, Dr. Goff.

2)  Hospitalization at Northwest Hospital with an infected port. Port surgically removed.  Sent home with some complex mouth infection, which has included bloody sores so painful that even liquid touching them made me cry.

3)  Back home with disorientation and inability to balance.  I didn’t know where I was or whose house I was in.  I couldn’t finish a thought or answer a question coherently.  I slept constantly anytime I saw a place to lay my head.  This was very distressing for all of us.  But perhaps the strangest of all was my new introduction to the world of falls.

4)  I have always been a very steady and athletic person.  But all of the sudden, I was falling about 3-5 times per day.  Falling down stairs.  Falling over in the bathroom.  Falling on walks.  But my favorite of all was the now infamous “bunny fall.”

We have an odd contraption/fence/stairs thing that allows us to reach our bunny habitat for feeding, playing, and visits.  I am forbidden from crossing this contraption without help.  However, one day only Daniel was home and while he was in the shower, I was getting tired of waiting to see the bunnies.  Let me set this up further by saying Steve had been recently cleaning and needed a place to set two giant loads of unfolded laundry.  He temporarily placed the two baskets right across from the end of the bunny gate next to Daniel’s bathroom door.  I make the climb to go see the bunnies and when done with my visit, I returned to the fence contraption and started to climb. I placed one hand on each wall, and as I tried to lift my legs over the four-foot high fence, my feet and hands caught.  I looked to the left, looked to the right. Looked straight ahead and realized I had but one choice—to let my body fall full force forward, head first, into the two baskets of laundry, while my feet and hands were still stuck on the fence!  I then rolled out onto the ground screaming for Daniel, who came flying out of the shower (towel on) to see my predicament.  After a thorough exam I was left with nothing but a bad headache.  I had been upset to have that laundry there but now we know—it was for good reason!

5)  Day by day my mouth has healed, infections are gone, sensical speech has returned, and I finally passed my goal of 7 days of no falls so I no longer require assistance everywhere I walk and go.  Such freedom!

6)  Other issues have appeared.  I have hugely puffy ankles now, which we will discuss with the doctor Friday.  My circumference is like a giant pumpkin now as the cancer in my liver grows and fills my belly with liquids.  We are attempting some chemo on Fridays to slow the growth and hopefully slow the pain. My basket of pain meds is about as large as our laundry room. 

As I watch my husband sacrifice in so many ways to care for me in sickness, I send out these words of love to him written by singer Dan Fogelberg:

Through the years as the fire starts to mellow
Burning lines in the book of our lives
Though the binding cracks
And the pages start to yellow
I'll be in love with you
I'll be in love with you

To my children, who are missing work to care for me and loving and serving me as Jesus has taught them, I am so incredibly blessed to be your Mom and am so very proud of you. And I’m also so blessed to have a daughter-in-law like Riley, who shows up to the hospital at 2 am with provisions or comes over after a long day of work to wash dishes.

And my hymn for the week reminds me that through daily pain, suffering, and sorrow, keeping my eyes on Jesus makes it well with my soul.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.

It is well with my soul;
It is well, it is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And has shed his own blood for my soul.

My sin—O the bliss of this glorious thought!—
My sin, not in part, but the whole,
Is nailed to the cross and I bear it no more;
Praise the Lord, praise the Lord, O my soul!

O Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll,
The trump shall resound and the Lord shall descend;
"Even so"—it is well with my soul.
Horatio Spafford

Thank you for your love and prayers for us.  And oh—for the delivery of flowers, cards, and my favorite—slices of Simply Desserts Cake!  Small rays of sunshine interrupting suffering and filling me with joy!


PS – Breaking news as of Friday afternoon: my blood counts were good so I was able to get chemo today. Hooray!

Outdoor fun with Sunny

Lake Chelan

Richmond Beach

Richmond Beach

Lake Chelan with Marti and Merle

Jericho visit yesterday

Sunny loves his "hello kitty" towel

After removing two liters of fluid off my belly, I'm eager to get discharged from  the hospital yesterday!


Friday, August 3, 2018

8/3/18 Friday...

     Well, it's been an interesting 24 hours in Shoreline.  I don't know about Lake Wobegon...actually I do: it's always quiet there.  Around here, the biggest thing that has troubled Gabrielle has been her horrible mouth sores to the point where she burst into tears in the morning when she tried to eat a bite of a very soft scone saying it was too sharp on her mouth and that she couldn't live like this.  She then asked me to get her in to see her ENT, Dr. Lin.
     When I told Dr. Lin the story, she kindly agreed to see Gabrielle in the afternoon even though she wasn't scheduling patients that day as it was her surgery day.  This is a doctor who usually has a 2-3 week wait to get in, and we got an amazing same day appointment!  At the visit, Dr. Lin said that the mouth sores looked more bacterial than thrush-like and prescribed a different "Magic Mouthwash" that had numbing medicine, antibiotics and steroids in it.  She also started her on some antibiotic pills.  After the first dose of said Magic Mouthwash, she felt better.
     The most amazing thing was that by dinnertime, she wanted to try some soup that had been brought by.  She took one bite and then had a very content look on her face, as it didn't hurt as much to put food in her mouth.  A tear came to her eye and she said she had to stop eating, then put her hands together and thanked God that her mouth was improving and that she was able to get some food in.  She then proceeded to eat more food in one meal than I have seen her eat in three days!  Praise God for that!
     The other big change is that she has been almost back to her normal self, chatting away in conversations, following what we are saying.  This morning, she chided me for changing one of her passwords on an account.  I told her that I needed to see what was in it and then it prompted me to change.  I think she forgave me.  She is also getting upset when I try and help her do things.  She even may challenge me to Scrabble later today, who knows?
     Right now (Friday morning), she is at the UW meeting with the nurse practitioner and then hopefully some chemo, though that depends on her labs.  No, she didn't drive herself, but I suspect that she will be giving the kids instructions on which is the quickest route to take like she does when I drive.  It seems that perhaps the chemo has helped a little, as she doesn't complain of quite as much tummy pain and is more functional.  We are hoping that this trend continues.  In my mind, it is a HUGE answer to prayer, a much needed one.  
     So, thanks for your prayers, words of encouragement, and just being there for us to meet our needs.  It is a humbling thing to be surrounded by so much love.  I can't say that enough.
     And, in case you missed the video Daniel posted at the end of my most recent blog, you might find it interesting.  He took the pics when we were in Maui.  It was taken only two months ago.  When I saw how much her health had changed in that short period of time, it was quite dramatic: going from swimming laps, walking, snorkeling to sleeping much of the time, confusion, more pain, mouth sores.  Hopefully we've got better days ahead.  Oh, and if you do watch the video, ignore the crazy yahoo in the first 30 seconds.  Daniel accidentally stumbled onto the set of Baywatch Maui where they were in the midst of filming the opening scene and he mistakenly included it in our home movie.  

     Update:  I just got word from the kids:  her labs were not good enough to get chemo as her platelets were too low.  This is a big disappointment, but we'll try again next week.

Wednesday, August 1, 2018

8/1/18 Midweek update

     Sometimes I wish I lived in Lake Wobegon, the town in Minnesota made famous by Garrison Keillor on A Prairie Home Companion.  You see, it's always fairly calm in Lake Wobegon, as every week on his broadcast, Mr. Keillor would begin with "well, it's been a quiet week in Lake Wobegon".  He would then proceed to talk about the goings on of the little hamlet featuring people like Pastor Ingqvist of the local Lutheran church.  Sadly, Lake Wobegon is about as real as Shangri La, Brigadoon or Camelot.  But I would love to be able to say, "well, it's been a quiet week in Shoreline".  
     Anyhow, after last week's chemo, Gabrielle has been having ups and downs.  Her fatigue continues, and she sleeps 80% of the day, as well as all night.  She has brief periods of lucidity, but at other times, she just can't find the words to say and is confused.  She gets frustrated and grimaces, as she knows she isn't as lucid as she would like.  A couple times a day, tears of frustration roll down her cheeks.  It is very sad to see.  
     On top of that, the chemo itself has taken its toll, with a return of bone pain along with a new "friend": thrush, a yeast infection in her mouth.  She had been complaining of mouth pain for a couple of days, and yesterday, I took a look, and she had sores and white film on her cheeks and her tongue.  No wonder, she hasn't wanted to eat or drink!  Because of that, yesterday we took her back to the UW for some IV fluids.  Fortunately, she was able to get them at the infusion bay where she gets her chemo, so she didn't have to wait in the ER for hours on end.  It only took three hours start to finish, and boy was she eager to get out of there when she was done!  They pumped in some magnesium as well as getting a chest X-ray which apparently was OK, as we haven't hear anything (no news is good news...we hope).
     The nice thing about the fluids is that she perked up a lot and even mentioned to the neighbors when they came with dinner that it "was a surreal experience" being so confused at times.  She then said that she wanted to go on a walk, but not in a wheelchair, a "real walk".  She made it about a hundred yards and then agreed to the wheelchair for a nice outing in the sunshine.
     As for today, lots of resting, her appetite is OK, but her mouth is still sore.  She is eating a little, but we hope she will have an even bigger appetite for dinner.  We had another outing today.  This time down to Richmond Beach Park.  We pushed her in the wheelchair to the end of the pavement and then she walked down onto the beach where we were treated to about six dolphins lolling a couple hundred yards offshore, along with a harbor seal and a blue heron.  It was a nice outing.
     And now, we are back home, with Gabrielle resting peacefully on the couch.  She is not in pain and is quite comfortable.  Tomorrow will be pretty low key.  But then on Friday, she has another round of chemo.  We are hoping that all they are going to do is the chemo, which should take an hour.  However, I suspect that they may tack on a bag of IV fluids for good measure.
     I cannot finish this post without mentioning how humbled and grateful we all are by the showing of support from so many people.  I know I have said it before, but it bears repeating.  When you are in crisis mode, when you don't know what is going to happen from one day to the next, it is nice to know that there are so many people out there who love Gabrielle (and us) who have come alongside us in this cancer journey.  It really strengthens our faith in ways that you will never know.
     Garrison Keillor would always end his Lake Wobegon stories with "and that's the news from Lake Wobegon, where the women are strong, the men are good looking, and all the children are above average".  My take on that is, "and that's the news from Shoreline where Gabrielle is strong, Gabrielle is good looking, and she is so far above average that she makes the children  at Lake Wobegon look like chumps".  

Riley, Daniel, Gabrielle and Renee at Richmond Beach this week. Short trips to the beach are a joyful moment for us all.

Here is a link to a video of our trip to Hawaii Daniel edited earlier this year when everyone was feeling better: Hawaii Dudley Video