Monday, December 31, 2018

12/31/18 New Year's Eve Day Morning

Gabrielle had a quiet night last night, which continues as of this writing.  I am sitting by her bed and am listening to the steady, gentle breathing of someone sound asleep.  It is much better than just before bed last night when she was coughing a lot.  She isn't sick.  I suspect the coughing is due to a combination of fluid in the lungs as well as some gastric reflux.  Yesterday, she had several periods of nausea that came on suddenly, but we were able to get things to quiet down with the right combination of medicines.  We are also trying to stay ahead of the pain with varying degrees of success.

Yesterday, we lost power for about 12 hours due to a freak lightning strike to the power pole in our front yard.  We kept Gabrielle warm with loads of blankets and firing up the gas fireplace.  Afterwards, taking advantage of a brief break in the clouds, and with a promise of heat in the car, we drove down to Edmonds for a short walk along the fishing pier:

She was worried that people would laugh at her because she had her jammy pants on.  As for me, I was worried that someone would tell her to head back to Fargo with that hat she was wearing, but she was warm and toasty.  

When we got home, we were greeted by her sister and brother-in-law Marti and Merle who brought us Pagliacci pizza and had a nice visit.  Gabrielle then suggested a round of canasta where she proceeded to clean our clocks (three canastas as opposed to none for any of us), and then wisely quit while she was ahead.

We have managed to do the home fluid drainage using the port which was placed on Friday.  We have it down to a system where Daniel is the "surgeon" and one of us helps him hook up the tubing and other paraphernalia.  We have been getting 2 liters of fluid off per day!  I don't like to see it build up that fast, but it is nice to see that we can get her some relief without having to go and sit in an emergency room waiting for a procedure to get done.

It was great to see her a little less foggy yesterday.  Also with a slight increase in energy level.  However, the pain and nausea are concerning as they are never far away.

Her next appointment for chemo is on Jan. 3.  We just don't know how she is going to tolerate it, or even if it is helping much.  Praying for wisdom about the next step.

Here's wishing all of you a great New Year's Eve and coming New Year.  

Saturday, December 29, 2018

12/29/18 Back home

It's Saturday morning and Gabrielle is still sawing logs.  It's so nice to see her rest peacefully.  It seems that when she is asleep, it's the only time she is not in some level of pain.  She did indeed have the procedure done yesterday: placement of the abdominal catheter so we can drain the fluid on our own.  It took much of the morning yesterday and then she came home and slept, which I suspect was a combination of lousy sleep the night before and the IV sedation they used to send her off to "twilight sleep".  After her afternoon nap, the pain got worse near the procedure site.  We're chalking it up to the fact that her abdominal wall muscles got a pretty good working over during the port placement.  Every time she tensed her tummy muscles it hurt more.  But, eventually, we were able to quiet things down to a manageable level with the right combination of heating pads, pain medication and a little diversion via some TV shows.  

Lately, her energy level has been pretty low.  She rests and sleeps a fair bit.  Is quite weak as well, which is understandable, as she has been eating only a few bites of each meal.  Daniel made some amazing chicken with cherry tomatoes last night, which she enjoyed.  I am trying to tempt her with some homemade sourdough pancakes for breakfast.  Let's see how things go.

Right now, she is at the point where we don't like to leave her alone, for fear of her falling.  She has periods of confusion as well, so we like to make sure we are there to help her with any tasks she may be trying to do, whether it be brushing her teeth, or getting dressed.  We have settled into a bit of a routine.  When she wakes up, she settles into the couch in the living room and likes to look at the Christmas tree and the fire.  With the right combination of pillows, blankets and a heating pad, her pain is manageable.  We try to get her interested in food or drink, with varying levels of success.  After that, she'll head to the basement where she likes to watch cooking shows of all things, especially the British Bakeoff ones with Paul and Mary.  I still can't figure out why she watches them as she has no appetite, but it works for her.  As an alternate, Daniel rented a great movie that I tried to get her to watch.  I told her it was an adventure film about a canoe trip down a scenic river in Georgia, full of fun outdoorsy scenes, great banjo music and Burt Reynolds...what's not to like about that?  She asked what it was called.  I said, "what's in a title anyway?"  She still preferred Baker Paul Hollywood to Burt from Hollywood.  Go figure. 

I hate to see Gabrielle suffer so much.  She has the highest pain tolerance of anyone I know.  She needs to be prodded to take medicine to help control the pain, as she doesn't like the side effects.  She never, ever complains and has cheery smiles and "thank you's" when we do simple things to make her more comfortable.  I admire her so much.  Here's hoping for a better day today.

I have to end by saying that I have been very thankful that my bosses and colleagues at work have been so kind and understanding.  I have had my shifts covered for the next week, which has been a real godsend.  Oh, and one more thing:  how about them Cougars?  It wasn't the Rose Bowl, but they did themselves proud!

Wednesday, December 26, 2018

12/26/18 Boxing Day...or as I prefer to call it: The Feast of Stephen

Hello, friends.

Perhaps the first title is more appropriate than the second one, as Gabrielle feels like she has been in a boxing ring for the past 24 hours.  I am writing this from the telemetry unit of NW Hospital where Gabrielle spent the night.  Yesterday, in the early afternoon, her pain was so bad that she said she couldn't stand it any more and had us take her in to NW ER.  Where they took great care of her, getting her pain under control, and then draining, yet again, massive amounts of tummy fluid...another 5.4 liters, which had accumulated in only three days since the last time she had it taken off.  Had planned to go down to the UW today to have an indwelling abdominal catheter placed so she could drain fluid at home, but last night's admission derailed that.
She has been in worsening health the past several days.  She made a very brief appearance at Oliver and Julianne's party on Saturday, but had to skip my mom's big holiday bash at Anthony's in Kirkland the next night, which was a huge disappointment as she had been looking forward to it for quite some time.
In addition to the pain, she was fairly confused last night, but that has improved a little.  Daniel and I just finished taking a lap around the floor and now she is back in bed resting.
As of now, we are still waiting to see the doctor to come up with a plan for the day.  She would like to go home, but we aren't sure yet.  
Her appetite is very low, and is only drinking small sips of water.  She even turned down some homemade sticky buns which I snuck in.  Happily, they didn't go to waste, as it is the Feast of Stephen after all.  More updates as they trickle in.
Appreciate your prayers and kind support.


Doctor came in and was pleased with her progress overnight.  Pain level is down and she got the OK to be discharged to home, which is great.  They had thought of getting the port placed today, but it was decided to get it done on Friday here at Northwest as an outpatient.  Right now, we are waiting for her to be unhooked from the IV and get discharge papers.  Then it's back home where we might just pretend that it is still Christmas and open the rest of the presents.
Looking forward, big goals are for persistent improvement in abdominal pain, better appetite, for things to get "moving", if you get my drift, successful abdominal port placement on Friday so we don't have to keep making return trips here.  Next chemo appointment is Jan. 3.  
We are thankful that she improved so nicely.  For a while, there was some concern that the abdominal fluid was infected which would have been quite serious.  Happily it was not, so she can stop her antibiotics.
Resting quietly now.  As for me, pardon me while I resume my Feast of Stephen.  To quote good King Wenceslas: "Bring me flesh and bring me wine, bring me pine logs hither!"

Thursday, December 13, 2018

12/13/18 Merry Christmas 2018

Merry Christmas to all!

Gabrielle here with the latest updates in my cancer journey.  I am at chemo right now with Steve getting my second dose of a long-shot drug called pemetrexed (common name Alimta.)  It was designed to treat lung cancer but has a 10-20% response rate for ovarian cancer patients. 

A big problem I have is continual build-up of fluid in my abdomen, ankles, feet and legs.  They stick a big needle in my side and drain the fluid.  I had 5-1/2 liters drained last week and four liters drained this week and have to wear compression knee socks.  Sometime in this coming week they will insert a plex catheter in my side so that I can open the spigot and take off a liter of fluid at home every day so it doesn’t grow into such a lot of fluid that it adds to my abdominal and back pain.  We are working on lessening stomach, back, and foot/ankle/leg pain so I can resume normal 1 hour walks.  Yesterday, I did a 30 minute walk which is a start!

I have had some bouts of explosive diarrhea, which keeps me pretty close to home many days, but we tested it and are grateful it’s not C.diff, a nasty colon infection.  Thank you Lord!  And it is going away at last.

Our focus right now is treating symptoms and pain in an effort to have as good a quality of life as I can.  Lately I’ve been a bit down, feeling like suffering is outweighing joy.  When you feel like that, it is hard to keep fighting.

I do have a strong feeling that this is my last year (or several months) of life on this earth.  Have been thinking about lasts—and firsts.  Last Christmas—the beauty of the tree at night with the lights off, Steve’s Christmas breakfast caramel pecan rolls.
Last anniversary (on the 18th—36 years).  Last New Year’s Eve, last birthdays—will I make it to my 59th on Feb. 18?  Will I make it to April 1 for Daniel’s 29th?  Etc.

But then I’m thinking about firsts.  First step into heaven, meeting Jesus and being greeted by all my Christian friends who arrived before me.  First days of no pain, no tears or sadness, and exploring all the glorious beauty there that awaits me.  No more medicines or pokes or chemo or scans and procedures.

We are are not sending Christmas cards this year, as we are vastly simplifying Christmas because of all we have going on.  So let me send our warmest Christmas wishes for a celebration focused on Jesus, who came to save us, who never leaves us or forsakes us such that we are never alone—even through cancer, and other sufferings, such as grief over the death of a loved one—we can remind ourselves that we are not alone. Our Heavenly Father walks in front of us, the Holy Spirit is behind us, and Jesus is by our side.

Thank you for your love and prayers.  You are dear to us.  May your Christmas be filled with Joy.  Immanuel—he is with us!


Sunday, November 18, 2018

11/18/18 A couple of setbacks

     Last Wednesday Gabrielle had another chemo session,  It was supposed to be the beginning of a new cycle comprised of two weeks of Taxol, followed by a week off.  Taxol has been very hard on her system with increasing nerve pain and numbness in her feet and then more recently in her hands.  She also gets pretty severe tummy pain from constipation along with a general feeling of malaise.  It is basically a poison, as the doctor is trying to poison the cancer cells. But it comes with a lot of collateral damage.  Till now, we have thought that it was worth it, as she has had a pretty good response over the past few months.  Although last week's CT scan was stable (see last entry), we got the disappointing news that her CA-125 has jumped about 200 points since the last time it was checked just eight days previously.  Clearly it isn't working any more.  But she went ahead and got another dose of the Taxol, cleaning my clock in the process, known as "schooling Steve in Scrabble".  She even managed to snap down a slice of passion fruit tart that one of her nurses made for her.  As the last bite was heading to her mouth, she looked sheepishly at me, as I was trying to figure out what to do with my rack of lousy one point Scrabble letters and asked, "you didn't want any of this, did you?"  Afterwards we headed on home where I settled into something I find immensely easier than playing Gabrielle at Scrabble: the Sunday NY Times crossword puzzle.
     The next morning, I woke up and came down the stairs to find this object in the entryway:

     It may not mean a lot to you, but for this child of the 60's, I immediately thought of the big black box from the sci fi movie 2001: A Space Odyssey.  If you've seen the movie, you may recall that a group of apes wakes up to find this big, imposing monolith just sitting on the African savannah.  They are both terrified and puzzled by it.  It inspires wonder and awe in them as they huddle around it.  That's the way I feel about this cancer journey: a big black box sitting right in the middle of our lives.  No idea what's inside, how long it will be there, or how to get it out of here.  It's just there.  
     In the movie, one of the apes finds a bunch of bones at the base of the box and grabs a long bone, discovers it's a pretty good weapon and starts smashing things with it, like other bones and such.  Which leads me to my next point: bone smashing.  Here is a picture of a smashed bone:

     Sadly, this bone (fourth toe) belongs to Gabrielle.  She actually smashed it the same night she finished chemo.  Managed to get most of her foot through the doorway except the toe.  When she did it, the toe was sticking out at a 45 degree angle, but she managed to find a doctor who did late night house calls and didn't charge very much...just a promise of mercy on the next Scrabble game...who very tenderly and gently yanked it back into place.  We're pretty sure it's the neuropathy that's to blame, as she can't feel her feet as well when she steps.  Still, she managed to limp around on the toe for a couple of days before going to urgent care where the kind doctor (not the same one who yanked on it) gently buddy taped it and gave good advice on very expensive sandals to wear (thanks, Dr. Malone!).  
     The most depressing thing about all this is that the broken toe has put a serious dent in one of Gabrielle's favorite activities: walking.  Every single step hurts, so she has pretty much been laid up.  On a rare sunny day like today, she would normally want to be outside going on a walk, taking in the fall colors, but that's not happening any time soon.
     We also got word the day after chemo that Dr. Goff was so concerned about the CA-125 rise that she pulled the plug on Taxol. Gabrielle will start on another drug which has some long name I can't remember.  It only has a 10-20% "response" rate, which isn't great. It seems that we are running out of treatment options, but we aren't ready to give up yet.  But it clearly is a discouraging set of news: rising numbers, feeling worse, busted toe.  It just seems so hard to catch a break lately.  
     But we rejoice in the fact that we still have her with us and that Thanksgiving is only a few days away...certainly a time to give thanks for so many blessings, even in the midst of the storm.  Blessings like family, friends, faith, health insurance, having enough, a roof over our heads.  As for me, I might add that I may add the "blessing" of losing the charger for the electronic Scrabble game.
     As for that black box at the foot of the stairs, I have no idea what's inside it.  Am scared to look.  Maybe it's full of birthday presents for me (coming up excited to be turning 39!).  Oh, and one last thing about that movie, it's got perhaps the best opening music ever.  Here's a Youtube link to it if you'd like to hear it.  In the movie, the scene is of an ape smashing bones which is a bit of a downer, so here's a non bone smashing place to hear it.  It's actually pretty inspiring music and gives me a little hope.  Try to listen to it and not feel like a champ, which is what Gabrielle is to me.

2001 Space Odyssey song (aka Thus Sprach Zarathustra by Strauss)    

So, now I am turning this over to Gabrielle for her to add her two cent's worth.

Gabrielle here.  Yes, it has been a rough week for sure.  My toe hurts and I'm going stir-crazy in the house and not being able to walk.  I still feel full of the will to fight cancer, but the doctors are running out of drugs that we haven't already tried.  I've been thinking how Jesus prayed and asked that if it were God's will that He wouldn't have to go to the cross, but then He finishes with "not my will, but thy will be done."  I have been working on praying this prayer, for I know that the timing of my death is in God's hands, not mine.  I know that what awaits me on the other side is more glorious than I can imagine, and I know that my family will join me there one day.  Meanwhile, we live one day at a time, thankful for each moment of loving and cogent conversation with family and friends and for knowing we are held by our loving and merciful God.

May you have many blessings to count this Thanksgiving--and some good elastic waist pants to wear to dinner!

Blessings to everyone.

Steve and Gabrielle

Wednesday, November 7, 2018

11/7/18 November's that for a catchy title?

Here is your action news reporter Steve, hard at it again while Gabrielle plans her next Scrabble move.  She asked me to write this so as to distract me from the bigger Scrabble task at hand.  But I’m pretty good at multi-tasking, and she doesn’t know it, but I just got the “z” (10 points, 30 if I play it on a triple letter box)!
Anyhow, yesterday she had a CT scan, which was the first big scan she has had to follow the cancer since June.  We met with her oncologist this afternoon (just got back as a matter of fact).  The report was pretty good.  Not great, but good enough in my book.  It showed “some mild interval shrinkage” in the tumors in her liver.  The other areas of involvement had decreased slightly as well. Not a lot, but we’ll take it nonetheless.  In comparison with prior scans where things have been growing, this was a welcome report. We had all feared a big jump in the size of the tumors and involved lymph nodes.  On top of that, her tumor marker (CA 125) has dropped 20 points in just over two weeks.  It had gone up 50 points the time before, so it is nice to see it trending down again. It also bears mentioning that there are a lot of areas completely untouched by the cancer: lungs, kidneys, guts (bowels to us medical types), bladder, spleen, gall bladder.  Lots to be thankful for there, don’t you think?
Gabrielle, being Gabrielle, was disappointed that she didn’t have a report that said something like “huge interval shrinkage”, or the much coveted “NED…no evidence of disease”.  I understand where she is coming from.  The report shows that she is staying even, treading water, when what she really wants to be doing is to make huge strides in her battle against the cancer.  That is what she has done so often done in the past.  It is hard to fight so hard, suffer in so many different ways and hope against hope that all that suffering is paying off with huge advances in health.  That's not happening here.  
To me, it was good to see that the chemo is knocking things back yet again, slowly and hopefully surely.  It was especially heartening because of all the difficulty she has had with the current treatment (Taxol).  She’s been on it before, but these past few months have been especially hard on her with more fatigue, numbness and neuropathy symptoms in her feet, almost non-existent immune system (just on the front end of flu season, no less), and anemia, just to name a few things.  I am really not sure how many more rounds she can take.  But nobody is a stronger or more determined fighter than she is.  She is my hero.
Last week’s chemo session, for example, started at 2:30 and she didn’t get home till after 11:00 PM due to the need to get a blood transfusion on top of the chemo drugs.  She was pretty wiped out from it all.  Happily, this is an “off week”, so she can rest up till next Wednesday, when she heads in again.
Anyhow, that’s about it from here.  I need to scoot and get back to the Scrabble game. It’s a neck and neck match, even though I was able to use my “z” with “kazoo” on a double word score.  She answered back with “quad” and then “ax” just now.  Darn it. And the final score: Gabrielle: 309.  Steve: 298.  Double darn it!
Mellow afternoon at one of her "happy places": Blake Island 

DJ and Gabrielle trying to get me to agree to smuggle  Bambi home

Nothing like foraging for wild mushrooms!

I was so happy with today's test results that I gave Gabrielle this present.  She was so thrilled with it, she said, "I'll never part with this!"
Cannon Beach last week before the storm hit.

Saturday, October 6, 2018

10/6/18 Post-chemo day update

Dear Family and Friends,

Why am I in my pajamas looking out at the beautiful, sunny fall day instead of out walking in it?  Because it’s the day after chemo and a nauseous stomach requires being still.  I had great counts for chemo day—strong neutrophils (white cells that fight infection), strong platelets (that clot blood), and my hematocrit was 27 (if it drops two more points I will get a transfusion), but this is enough red blood cells to allow me to walk 2-3 miles on the flat—just no hills or stairs. 

I was very tired arriving at chemo at 8:30 AM yesterday and my sweet chemo nurse, Jocelyn, gave me a private room with a bed!  I didn’t even mind that Daniel beat me at Scrabble, I was just so happy to be lying down! 

Best news of all is my CA-125 tumor marker dropped from 700 to 452!  We need to get it to 35 or under, so we have a long way to go, but having started at 3,000, we are making great progress!  And one more piece of good news—I went to get my fluid drained from my abdomen this week and they said there wasn’t enough to drain!  This means my liver tumor is shrinking and not making as much fluid anymore.  Hooray!

On another note, my family and I went through a difficult thing this week.  We had a dreaded family meeting.  When our kids were little, all you needed to fill them with fear was to tell them we were going to have a family meeting!  This one was probably the hardest one ever, because we wanted to go over “final things” so that we can be prepared for when my time comes. 

My goal is to die at home with the help of Providence Hospice and my core team—Steve, Renée, Riley, and Daniel (plus Adrienne if she’s here).  We will enjoy Christian music and hymns, soft lighting, prayers, Frasier episodes, and a pastor visit.  We will entertain limited visits from my closest friends and family when I feel up to it.  And of course, we will be glad to hit the morphine pump when pain dictates we do so!

We also went over final documents like wills, powers of attorney, health care directives, beneficiary designation forms, how to pay different bills, etc.  Lastly, I have made DVDs for Steve, Renee, Daniel and Jericho, which are kept with my will.  I think they will love having some final words from me (with perhaps some dances and singing thrown in just for fun)! 

After the family meeting, we needed a little lightening up, so we drove out to Snohomish for some mini golf.  The wind across the flats definitely let us know that summer has given way to fall.  It was a fun way to cap off a stressful afternoon, even if Steve's little pink golf ball needed a few more strokes than Daniel’s blue one to find the holes. 

I hope you and your family don’t need a dreaded family meeting anytime soon!  But it does feel better knowing we are all on the same page with my wishes and are somewhat prepared for when the time comes.  Hopefully, thanks to your prayers and God’s mercy, that time will be a LONG time from now! 

I will close with this writing I love by Anne Lamott:  “Grief is holy ground.  Death is as sacred as birth.  Don’t worry!  Almost every single death is easy and gentle with the very best people surrounding you for as long as you need or want.  You won’t be alone.  They’ll help you cross over to Heaven that awaits you.  When all is said and done, we’re really all just walking each other home.” 

Well, back to my resting.  I have to be rested before Jericho comes tomorrow.  We will take him to Sunday school, then work on biking without training wheels (!), and as a reward, he gets to help bake pumpkin bars with cream cheese icing and little candy corn pumpkins on top.  A great day will be had by all!

With love and gratitude,

Butternut squash and spinach enchiladas at Cactus!  We boated over to the one in Kirkland.

My boating/eating partners!

Posing by our favorite animal sculpture--rabbits!

Daniel's homemade fresh raspberry lemon cupcakes. The icing is his homemade lemon curd and mascarpone.  Delicious!

Jericho feeding ducks at Green Lake!

Lots of little friends.

Daniel and I made homemade ravioli this week.  Two kinds--cheeses and sundried tomatoes in pink sauce and butternut squash and browned butter with sage.

Mini golf in the freezing wind!

Quick--get me to the warm car with the heated seats!  Daniel won!

In goes Jericho! 
Riley didn't think this lavender bridesmaid dress would look good on her, but she is lovely as always!

My greatest life's achievement was raising these two amazing young adults!