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 soon...so 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

11/7/18 November 7...how'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.

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,

Gabrielle

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!

9/16/18 Provider Fatigue

Dear Friends and Family,

I’ve been busy lately with what Steve terms “provider fatigue.”  In the past two weeks I’ve been in the ER twice, had a surgery to put in a new chemo port on my right side after the one on the left side became infected and had to be removed, had a chest x-ray, have had a long needle suck out fluid that has built up on my abdomen, and of course, have had chemo.  If I never had to visit a doctor, dentist, surgeon, or radiologist again, I would be a happy camper.

After Friday’s chemo I was terribly sick.  Nausea, diarrhea, stomach pain, etc. I get depressed and reflective on these bad days, wondering if the joy in my life outweighs the suffering.  Yesterday, the answer would have been no.  But today, I woke up feeling better, able to eat. Steve, Daniel, Renee, Riley, and Jericho are all here, building a lego airport, after which we will head to the park for a bit before naptime.  Today has a good amount of joy—hopefully enough to see me through the next lousy day.   “Weeping may endure for a night but joy comes in the morning.” Psalm 30:5

I have had a total of five chemos in this round and my tumor marker has dropped from 3000 (a truly terrifying number) to 703.  This is great news, but it needs to continue dropping a lot in order for me to actually feel better in my day to day life.  I do not know if God has a remission in mind for me or if through the suffering He is preparing me for Heaven where “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed.” Rev. 21:4  What tremendous hope the future holds for all who belong to Jesus.

Thank you to all who pray for my family and me.  And to those who have made us the best soup and chicken divan, who have sent cards that cheer me and have dropped by flowers and treats.  I love you all for standing with us in the hardest battle of our lives.

Love,

Gabrielle

Waiting patiently for swim lesson.

Spinach, cheese, bean quesadilla and apples for lunch.  He likes to announce "I'm a spinach man now!"

First day of Sunday School deserves a chocolate donut.

Seattle Storm Fever!

Long walk at Discovery Park

Just finished her other book, The Great Alone, and now I'm on to The Nightingale.

Daniel has perfected my grandma's popovers!  Yummo!

9/1/18 Another chemo bites the dust

Dear family and friends,

Yep, it’s me again, Steve.  Gabrielle is still licking her wounds from the sound thrashing I gave her in Scrabble yesterday…OK, so I only won by three points, but it still was nice to see the bold “Steve has won the game!” along with a bunch of flashing stars around my name on that final screen.  Guess I won’t be trying to hide the game next outing!

But, more importantly, Gabrielle had another chemo session yesterday.  We have settled into a routine in which she gets chemo (Taxol) two Fridays in a row, followed by two weeks off, and then we start all over again.  She tolerates the chemo relatively well, but is getting the expected side effects of nausea, fatigue, nerve pain and decreased immune system—all of which she takes in stride, and also give me a very slight (not much) twinge of guilt for beating her in Scrabble.  

Once home, we settled in to watch the Tom Hanks movie Captain Phillips with Daniel and Adrienne, about a cargo ship getting hijacked off the coast of Somalia.  For the next hour after the movie ended, I walked around saying, “Look at me! I’m the captain now!”  and “No, games, Irish!  I’m the captain now!”  If those references are lost on you, well then you will just have to see the movie.  Apparently, Adrienne thinks I am quite good at impressions and has now added a Somali pirate to the list of people she thinks I have nailed which includes, but is not limited to Ice T, Steve Irwin, Barney the purple dinosaur and Sean Connery.  She hasn’t seen my Dr. House impression yet.  Am saving that one for later.

I am pleased to report that the chemo clearly seems to be helping.  Her jaundice has cleared up, along with her puffy feet and she generally feels better.  However, she is still collecting fluid in her abdomen and needs to get it drained about every 10 days or so.  Like everything, she is even competitive in that and was disappointed that last time, they only got 2 liters out, whereas the time before they drained 2.5 liters.  To me, in this situation, less if better.

She is just conquering a bladder infection and has been able to cut back from two antibiotics to one.  Also, although this upcoming week is an “off week”, chemo-wise, she still has some doctor visits: one to the dermatologist for a persistent rash, another to check on her old port site which is still draining after being surgically removed two months ago, and one final visit to get a new port put in.  That last one, about getting a new port is nice, it will make getting chemo much easier again.  For the past four sessions, she has not had the power port and they have had to start IV’s each time which can take a while.  It was almost an hour to get the last one started.

So, all in all, we’re managing relatively well in the Dudley/Ice T/Captain Phillips/Barney household.  A final phrase from the movie that we tell each other when cancer is beating us down is this one:  "Everything's gonna be ok, Irish."  

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Phil. 4:6-7

Love,

Steve (& Gabrielle)

Reneé looking elegant as she prepares to officiate the wedding of her friends, Dani and Jeff, at the Beacon Hill Winery in Oregon.

I want a donut wall in my house!

Dani and Jeff, first dance!

After seeing that donut wall, we had to swing through Portland to get some of the best donuts in the world.

Daniel and me on a walk by the sea.

Adrienne, Daniel, and me hitting up the Maltby Cafe for breakfast!

I am on a quest to find the best berry milkshake in Seattle, after having an amazing one at the Tillamook Cheese Factory.  First try--Red Mill Burgers.  Seven out of ten.

Steve can't figure out why he keeps running out of shaving cream!

My beautiful daughters!

Dani's Mom, Joan, made a beautiful mother of the bride.  

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? 

Love,

Steve

Re-charging our souls at Canon Beach!