Thursday, June 21, 2018

Brief Houston update

Hi, there.  Steve again.  Gabrielle is working hard, resting in preparation for her big day of testing today.  Yesterday was kind of ho-hum.  Only testing she had was a blood draw in the morning.   After that, we just headed back to our apartment where Gabrielle had a long nap and we binge watched TV.  Her tummy pain has been getting worse, so she didn't sleep well the night before.  Still no appetite, but last night, I was able to get her to eat an open faced turkey and cheese sandwich and maybe an M&M or two for dessert.  We hunkered down amidst thunder, lightning and torrential Houston, in my mind the title of "the rainy city".  Oh to be back home in sunny Seattle!

As for today, through the "magic" of scheduling vagaries somebody decided to lump all the really tough tests into a hectic tightly packed day today.  That means that she gets an ECG (simp), a chest, abdomen and pelvic CT scan with contrast material (not so simp), followed by a stress echocardiogram (way, way harder than "not so simp").  She can't eat before these tests, which means that she has to have the CT, get the contrast material which tends to give her the runs (TMI? you decide), and then she has to hop on a treadmill an hour later and run fast enough to get the heart pounding so they can get an echocardiogram while the heart is racing away.  I have been praying for her endurance today, and hope you will too. 

She is a real champion, my hero.  She endures this ordeal patiently and with grace and is an example of strength, meekness, godliness and humility all rolled into one.  

After all this testing, there is one left: pulmonary function tests.  We haven't gotten that one lined up yet, but after the treadmill it will be "easy peasy" as some people like to say.  Hopefully it will be tomorrow sometime, not at the end of the day today.

With all the tests out of the way, that will end "Step 1" which I wrote about before.  Then there is a bit of a waiting game while they review the data, labs, etc to determine if she is indeed a candidate for the study and possibly plug her into a surgery slot in 2-3 weeks.  But we don't need to be here for them to do all that.  As such, we are going to be able to come home tomorrow night!  Woo hoo!  Our flight leaves in the evening, and we'll get in late. 

Meanwhile, she is having more pain, as I said above.  We are obviously quite concerned about her worsening symptoms, and covet your prayers, good wishes, lit candles, you name it.

And as those in the fourth estate like to say, "and that's all the news that's fit to print".  If you want more the news that's not fit to print, well you're on your own.

And now for some pix!

First: me enjoying a cold beverage (not sayin' what's in it, or how many I had).  At El Real Tex-Mex restaurant.  Notice the western playing in the bar...a refreshing change from what is on every other TV in town...the World Cup (apologies to soccer fans).  

Gabrielle at El Real eating amazing guacamole, and not showing much interest in the western on the big screen TV.

Gabrielle at a reflecting pool in Hermann Park (museum district)

This oyster shack, Capt'n Benny's, is shaped like a boat.  They are right next to where we are staying.  Sign on the other side says "eat fish live longer, eat oysters, love longer".  It's rated 4 stars on Yelp, but the smell of grease two blocks away has kind of made me leery.  Yep, that's our neighborhood: an oyster shack, a pawn shop and across the street a liquor store.  

Tuesday, June 19, 2018

Greetings from Houston!

Dear Family and Friends,
Steve here.  Greetings from Houston, Texas!  We seem to have brought a little of Seattle’s rain with us, because that’s what it has been doing off and on ever since we landed.  But it’s warm rain!  And when it’s not raining, you can still enjoy the 110% humidity!  Gotta love Houston in the summer!  So, we wander around in 85 degree weather, only to pop into a building, any building, and have the AC cranking to “popsicle” level, so we travel with sweatshirts everywhere we go.
But, cutting to the chase, here’s our update so far.  We had a very busy morning sitting in various waiting rooms.  Gabrielle met first with an ARNP (doctoral level, no less!), who asked a lot of questions and did an exam. Then she brought in the M.D., Dr. Jazeiri, who gave her another once over, then discussed the upcoming clinical trial.  After that, we met with the R.N. who is the trial coordinator who actually spent the most time with us out of any of them. 
Before Gabrielle can enter the trial, they have to get a bunch of screening tests done which include lots of blood tests, a stress echocardiogram, pulmonary function tests, a chest and abdominal CT scan and an EKG.  She has a couple of the tests scheduled over the next couple of days and is waiting to get the rest of them lined up.  My very strong hope and prayer is that these can get done in the next few days because then she’ll be through with this first step and can come home before Step 2.  It may be easier if I write it out in table form for you:

Step 1.  Meet with research team, sign consent for study and get screening tests.  Hopefully this gets done this week.  If that’s the case, then we theoretically could leave for home as early as the end of the week till the next step.

Step 1.5.  After Step 1, unwind at El Real Tex-Mex restaurant for amazing guacamole, spicy enchiladas and a really good margarita!  Way cool!  It was right next to a shop called Adam and Eve with blacked out windows.  Not sure what they sold in there, but Gabrielle wouldn’t let me go in and investigate.  Instead, we went to the Natural History Museum where we saw a really cute 3-D IMAX movie (wearing our sweatshirts, of course!) on trying to introduce pandas back into the wild.  Seeing baby pandas rolling around in the bamboo forest is a good stress reliever for whatever the circumstances!

Step 2.  Once the tests are done, the next step is to get her surgery scheduled where they can harvest a piece of her tumor and isolate the lymphocytes that are inside.  These are the Tumor Infiltrating Lymphocytes (or TIL for short).   But right now, they are scheduling 2-3 weeks out.  That means that she could come home till her surgery date and then pop back down just for the surgery and recovery, maybe only for a few days.  She will need to lay low at home to stay completely healthy for surgery. Not the best time for social visits. While she recovers from surgery, they will try and grow billions of those TIL’s in the lab, which takes four weeks. 

Step 3.  This is the hardest and it takes place beginning three weeks after the surgery.  We return to Houston and Gabrielle gets her immune system knocked out and the new TIL’s put in.  She has to be in the hospital for 2-3 weeks on this part as she will be vulnerable to infections.  She also will feel horrible, as part of the medicine they give her to knock out the immune system causes fevers, nausea, shakes, and horrible body aches.

I have to stress that this is a very new type of clinical trial they are doing.  It is the one that holds out hope for a cure, but it is still very risky and there are no guarantees.  Gabrielle is feeling worse every day with more abdominal pain, and the thought of being in such a trial and not having any chemo at all during the several weeks of the study is scary.  Even if the chemo hasn’t been all that great lately, I am pretty sure it has been doing some good.

I would like to ask for your prayers, as we are a little discouraged right now.  A tremendous battle lies ahead against formidable odds.  Thank you for holding us up with your love and prayers, and also for the many generous financial contributions that are supporting our expenses to participate in this trial.  You all mean the world to us.


Steve (& Gabrielle)

p.s.  sorry, no pics this time.  Running out of steam.

Sunday, June 10, 2018

Houston, here we come--with your help!

Dear Friends and Family,

This is just a short post to say that my daughter, Renée, made a GOFUNDME page to help us raise support for Steve's and my trip to Houston, Texas so that I can be part of a clinical research trial for my ovarian cancer.  As I mentioned in my last post, the trial will involve a surgery and total immunosuppression, followed by an infusion of billions of cancer-killing lymphocytes, which will be grown in a lab for me as clones of my own immune system's fighter cells.  It is cutting edge research that is my last hope of putting my cancer in remission, now that I've failed all standard chemotherapies.  

It is a tremendous blessing that out of all the ovarian cancer patients in the country, I have been invited to participate in this trial.  It will involve Steve and me moving to Houston for seven weeks, followed by up to three years of frequent follow-up trips back to Texas for my team of physician-investigators at the MD Anderson Cancer Center to document my progress.  

I have two requests of you, my cherished blog readers.  
     1)  Will you please pray for my family and me during this very hope-filled but terrifying next phase in fighting cancer?  I am a bit anxious, as you might imagine, so I am focusing on this Scripture verse:  "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."  Philippians 4:6-7
     2)  If you are able, will you please consider making a gift of any amount to help us cover the huge and unforeseen expenses that this trial has thrust upon our family, at a time when we have been reliant on one income and Steve is working a greatly reduced schedule to help care for me?  You can donate by clicking here:

Thank you from the bottom of my heart for your love, care, and support for our family through our life's toughest journey.  


Thursday, June 7, 2018

And I don't even own cowboy boots or hat!

Dear family and friends,

This last few weeks have been quite a whirlwind.  Daniel graduated from medical school on May 25th at Benaroya Hall.  The ceremony was made extra poignant by the fact that Steve was also dressed in his UW faculty doctoral regalia and he was the one to present Daniel with his doctoral hood.  So proud of both my Dudley docs!

The very next morning we flew to Maui for a nine-night stay.  We had a big group, including Steve, Renée, Riley, Daniel, Adrienne, my aunt and uncle, Julianne and Oliver, and me.  The weather was lovely, the fish and turtles happy to let us snorkel above them each morning, and each night we enjoyed the most delicious dinners, made by Renée, Riley, Daniel, and Adrienne, out on the deck as the sun was setting over the sea. 

The trip would have been perfect if we could erase the last night.  The evening before flying out, I had severe abdominal pain in the upper right quadrant, just below the ribs there.  We had to go to the ER in the town of Kahului, about half an hour away.  They did a CT scan and discovered that the cancer in my liver is growing like crazy.  There are more tumors now, and they are bigger than ever before.  The ER gave me a host of pain meds, then sent me back to our rental home.  After 30 minutes at home, it became clear that the pain was worsening again and we had to return to the ER.  I have never before been to an ER twice in one night!  More pain meds were given and then I was sent home to sleep for two hours before needing to arise and head to the airport.  I conked out as soon as my head hit the pillow and when I was awakened, I was told that my family had already packed for me and that I just needed to dress, brush my teeth, and get in the car.  I had received so many pain meds during the night that I needed assistance just to walk to the bathroom, and once there, I immediately threw up!  After some extra assistance with dressing and teeth, I was led to the car and somehow we made it to the airport, where a wheelchair awaited me, and thanks be to God—I got on that plane!  There is nowhere you want to be when you are sick but home in your own bed. 

The very next morning Steve and I met with my oncologist and discussed with her an interesting clinical research trial that Daniel found when researching trials open in the U.S. for people with my exact kind of cancer.  What he found is a brand new trial in Houston, Texas at the MD Anderson Cancer Center.  In the past two days we have discussed it with my oncologist and each other, have prayed about it, and I have been screened over the phone for admittance to the trial.  It will involve going to Houston many times over the next six months, and then about every three months for check backs over the next three years.  My longest stay in Houston will be around six weeks and will begin the week of June 18.  The study does not use a chemotherapy drug.  It will take out a piece of my cancer and take out some of the lymphocytes in my immune system and test to be sure my own lymphocytes can kill the cancer cells in a petri dish.  If so, they will then grow me millions of new matching lymphocytes in the lab.  When the lymphocytes are ready, they will knock out my immune system with a huge dose of chemo drugs, then re-inject me with the millions of new lymphocytes in the hope that they will seek out and attack all the ovarian cancer cells in my body. 

This “tumor infiltrating lymphocyte” (TIL) research has worked amazingly well on many types of cancer, such as breast cancer and melanoma, and now they want to see if it will work on ovarian cancer.  There are many risks in entering this trial, but there are also  risks if I don’t enter it and just stay in Seattle trying the same old drugs, which one by one have been failing me.  Please join us in prayer, as we have a lot of travel and housing arrangements to make in a short period of time.  I have no technology skills whatsoever, but I may try to figure out how to make a "go fund me" page to help us pay for this.  The trial itself is covered, but all the plane trips to Houston, housing for the family member or friend who will be with me during my time there, and meals for that person are on us.  Not exactly something we saw coming or budgeted for!  

Oh--and please pray that I will pass all the screening tests to be admitted to the trial once I get to Houston (scans, blood work, psychological fitness, treadmill test, etc.).

Thanks to all of you for your love, prayers, and support over this 5-1/2 year journey.  As we prepare to leave for Texas, there will be no cowboy hats on our heads, nor boots on our feet, but our eyes will be firmly fixed on Jesus, who helps us each step of the way.  



Graduation day smiles on our deck!
Julianne and Olive at the Iao Valley State Park in Maui.

Dinner on the deck!

Riley, Renée, Daniel, and Adrienne.

Lappert's hot fudge sundae in Maui.

Selfie by the Sea.

Turtles on beach, resting in sun!

Pair of docs on Big Beach.

Your kids are never too old to want to bury each other in the sand, or in this case, pebbles.

Adrienne and Daniel by the Sea.

Poster we had made for Daniel's graduation!

Two handsome hooded docs!

Wednesday, May 9, 2018

Malt balls? Chocolate Malt? No, Malta!

Dear Friends and Family,

I remember the days before cancer when life seemed as if it would go on forever.  I needn’t rush to plan trips, game nights, or other experiences with family and friends for I knew there would be plenty of time for that later.  Now, however, I am continually conscious of a mental “tick, tick, tick,” reminding me that my time on this earth is finite—perhaps more finite than yours.  And thus, there is absolutely no time to waste. 

With that in mind, consider the last two weeks of my life.  Immediately following two walks, two lunches, and two dinners with friends, I flew to California with Renée, Riley, Daniel, and Jericho for a four-day trip, celebrating Jericho’s upcoming 4th birthday, to Disneyland and Disney California Adventure Park!  Steve graciously stayed home and worked for somebody has to pay the bills, and that somebody is no longer me.  A wonderful time was had by all, and never before have I witnessed four adults so utterly exhausted by chasing after one almost 4-year-old!

Picture me arriving home from the airport Monday evening, plopping into bed, then arising Tuesday morning for chemo day.  Wednesday, my calendar was blocked out as it always is the day after chemo, with a big slash and the word SICK.  Then at 8 AM Thursday, Steve and I jumped in our car and drove to Ashland, Oregon for a four-day trip with my sister, Marti, and brother-in-law, Merle.  Did you know that Ashland is right next door to CALIFORNIA?!  My backside does!!!  We shopped, ate, walked through Lithia Springs Park, saw two plays, then hopped back in our cars and drove to central Oregon, where the most beautiful home, graciously loaned to us, by our cousins, Rob and Becky, awaited us.  There, we hiked three days in a row along the banks of the stunningly beautiful Metolius River, shopped some more in nearby Sisters, Oregon, read books, and grilled kabobs on the deck overlooking a creek with a 180 degree view of glorious nature.  We topped off our days by playing canasta and sharing five different flavors of fudge.

I arrived home from that trip Monday night and Tuesday, Daniel and I went to the Chihuly Glass Museum (don’t miss it!), to happy hour at the Metropolitan Grill downtown, then picked up Renée at work to drive her home and see her new couch.  After chatting with Renée and Riley for a bit, we swung by Fred Meyer to pick up organic kale for the bunnies and the May issue of Seattle Met Magazine (in which Daniel is prominently featured for his role in helping the UW investigate a new male birth control drug; he will be in Time Magazine in June, in Glamour Magazine this summer, and in a one-hour TV special produced by the BBC in August!).  On our way home from Freddie’s, we made one final stop at Menchie’s for some pineapple dole whip sorbet.  Today I am in a private room with a bed (!) for chemo, which will be topped off by a shot in my stomach to grow blood cells and the drip, drip, drip, of two, big, red, life-giving units of blood.  Like a vampire, I vant to, I need to, I must have some blood!  And speaking of blood—congrats to my sweet Renée on reaching a milestone in April for donating 100 pints of platelets for people like me who need them! 

Are you just a teensy, weensy, tiny bit tired reading these last four paragraphs?  I sure am!!!  I know it is important for cancer patients and anyone battling illness to rest.  And believe me, every time I see a couch, reclining chair, or even a fluffy-looking carpet, I lie down for some blessed minutes of relaxation in the midst of so much excitement.  But as Steve and I have always said to one another, we would rather burn out than rust out.  I wouldn’t have it any other way.  J

I just finished studying the Biblical book of Acts in my Monday Bible study group.  In the 27th chapter, the apostle Paul boards a ship with his jailers and sails for Rome, where he is to go on trial in front of Caesar on a variety of trumped up charges.  During the journey a terrible storm arises.  The boat faces winds of hurricane force, and as the ship tosses and turns and threatens to break apart or go aground on a sandbar at sea, the men fear, rightly so, for their lives.  Verse 20 highlights their despair, “When neither sun nor stars appeared for many days and the storm continued raging, we finally gave up all hope of being saved.” 

But then an amazing thing happened.  After yet another terrifying evening aboard, they awoke to daylight and the sight of a bay with a sandy beach.  They swam and floated on planks from the broken ship to get to shore and everyone reached land safely.  And in chapter 28, we read of the beautiful island nation God had brought them to--Malta.  The islanders showed them unusual kindness, building a fire to warm them, feeding and entertaining them, honoring them in many ways, and when they were ready to leave, the travelers were provided with a ship and the supplies they needed to continue their journey.

There are so many days in my cancer journey when I believe the hurricane force winds of chemo, climbing tumor markers, and frightening scans will surely sink me.  The storms rage in and around me, in my body, and in my mind, heart, and soul.  I am filled with fear, and very nearly give up hope.  But then Malta comes along.  For me, Malta is the smile on Jericho’s face as he spins circles in a giant red teacup and gets hugged by the “real” Mickey Mouse.  Malta is a play in Ashland that makes me laugh so hard that I forget how sick my stomach feels.  Malta is hiking in the sunshine along a sparkling, crystal clear river, with so many colors of blue in the various depths of the water that my soul is just completely filled up.  And Malta is seeing magnificent glass creations, eating the best-ever happy hour burger, and lying exhausted on Renée and Riley’s brand new couch while three of the people I love the most in the world are on the opposite couch, chatting with me about anything and everything.

For the next two days I will be sick, with a capital S.  No hyperbole here.  But I will tell myself to hang in there, for while I’m sick, the God who loves me will be planning my next Malta.  And one day, arriving in Heaven will be the Malta to end all Maltas.  We have this hope as an anchor for the soul, firm and secure.”  Hebrews 6:19



P.S.  My tumor marker dropped another 57 points last week!  Praise God, and thank you for praying!

Jericho loved this John Wayne statue at the Orange County Airport!

Standing by the Metolius River.
Jericho playing on the slides at the home we rented.

The Disneyland Crew!

A Bug's World at Disneyland.

Happy riders!

Daniel and Riley had to ride the teacups with Jericho for Renée and I get too sick with all the spinning!

Pretend vehicles are so much fun!

A restful moment by a fountain.

Starstruck meeting Mickey!!

Strolling the clean and happy streets of Disneyland.

Learning to spin the wheel to go in circles during the ride.

Daniel and I are dripping wet after going on a whitewater rafting ride.  Then we posed with this characters, having no clue who they are!

The little, first-time flyer waiting for the plane to load.

Having gotten soaked in a water park feature, Jericho enjoys his pizza with no shirt on!

This is the water feature he got soaked in!

Marti and me in Ashland.

Sitting on the deck at our cousin's home in Camp Sherman, Oregon.

By the banks of the Metolius river.

By the river again.

Sunny, enjoying outside play time.

Mickey Mouse pancakes by Daniel.  The perfect Disneyland breakfast!

The one, the "only," Mickey Mouse!

Steve by the old fashioned gas pumps at the Camp Sherman store.

Steve, Gaby, Marti, and Merle by the gorgeous Metolius River!

Look at the different colors of the river water.

Raging river.

Favorite hiking buddy.

Standing in the 45 degree river water!  Brrrr!

Steve driving WWII jeep known as Free Willy!

Fudge plate, anyone?

Love the Mickey Mouse in flowers that greets you at the front of Disneyland!

Chihuly Glass Museum.  Kind of looks like Daniel is wearing a wild wig!

Strolling through the glass garden.