Tuesday, July 17, 2018

Back to Houston next week...we hope

     Yesterday we got a call from the research coordinator who said that after consultation with the main doctor for both studies, that Gabrielle should continue with her plans to be in the second study.  Main concern is that the first study involves a long period of time in which she doesn't get any treatment at all, and he didn't want her to have to go too long before having some sort of intervention.  Possibly down the road, she may be a candidate for the first study again, but for now, it's the check point inhibitor trial.  
     Plan for now is to return to Houston on Monday, July 23, have several more days of testing and then get an infusion of the check point inhibitor later that same week (most likely Thursday, but maybe Friday).  Home on Saturday.  However, before we take a trip down there, they want us to get some preliminary labs here later this week to make sure that her liver an blood counts are within the right parameters for the trial to proceed.  That happens this Thursday at the UW.  In particular, they look at things like platelets, neutrophil counts and liver function tests...all of which have been impacted by her cancer and/or treatments in the past.  
      So, we're hoping to get the green light after the testing.  We don't want to wait till we get all the way down there and then get told to head home due to abnormal labs.
      In the meantime, she has finished her two rounds of antibiotics, but is still on the blood thinner.  Appetite continues to be marginal at best.  I made her a great Caesar salad yesterday for lunch, and she promptly looked at it and said, "Don't get mad, but I don't think I can eat this now."  That would have been fine, but then she added, "or ever".   Happily, Daniel wasn't so discerning and snapped it down like candy when he got home.  And who could get mad at Gabrielle anyhow?  As long as she gets her chores done on time.
     She really wanted applesauce, but we didn't have any, so I smooshed up three apples, tossed in a little Martinelli's and cooked them down to a soft sauce, which she did like.  So yesterday's tally, food wise was: half a bagel, two scrambled eggs with cheese, and the applesauce.  Oh, and for dessert, she had the top half of one of Renée's birthday cupcakes...the side with the frosting on it, of course...eaten just the way she likes to eat maple bars.  By the way, Happy Birthday to Renée!  She is...?? years old today (being a gentleman, I won't say her age...but I can tell you that I became a dad in 1988).  
     Speaking of my cooking, I had a real bang up day yesterday.  In addition to making the aforementioned "inedible" Caesar salad, I made some kettle corn (did this after Daniel came home and saw that the package we bought at the Edmonds Sunday market had somehow dwindled to nil), which was a big success.  Also the applesauce.  However, my best culinary adventure was cooking some egg whites on the dash of my car.   It was a tad toasty yesterday, and I wanted to see if my car was as good as an oven.  Here are the before and after pictures, you decide:

Look mighty tasty, don't they?  And it only took an hour and a half to cook two of them.  Next up, chocolate chip cookies?  Oysters?  Salmon?  You may not want to ride with me in my car for a while.  Right now, it sort of smells like sulfur.

Hoping to update you once we get to Houston.

Chef Steve signing out.

Saturday, July 14, 2018

Waiting game

Once again, Steve here as guest blogger.  Gabrielle keeps telling me she'll do a blog post, but then things get away from her.  Anyhow, thanks so much to all of you who have expressed concern, support, and so much more in this past week, as things have been tough.  We have been immensely cheered by flowers from my mom and Fran's chocolates from Renée and Riley (no, I didn't eat any, you two!), as well as lots of cards and calls, texts of support.  Karissa and John dropped by with some great BBQ for dinner one night.  So kind of them!  I suppose I am missing something...oh yeah: the bottles of Camden's ketchup from Portland courtesy of neighbors Laura and Jerry (not quite as good as his infused vodka, but then again, it's goes better on top of burgers).  Oh, and Mark and Tanya dropped by before their late night hockey game on Sunday, along with a special treat for me from the beverage section of Trader Joe's.  And thanks for the visits from Julianne and Marti as well.  Gabrielle was delighted to meet Amy and Matt's new baby, Edison or Emerson (forget which...my bad!).  Cute little nipper!  Holding a newborn is good for the soul!

So here's the update.  After a rough couple of nights in the hospital, she turned around pretty quickly, with sodium levels improving (though not quite normal) and fever resolving.  They found a tiny blood clot where the infected port had been so that means she is now on a blood thinner for six weeks.  Is also on two different antibiotics.  She was asking to leave about 30 minutes after surgery on Sunday, but we prevailed upon her to listen to the doctors so she stayed the night and then got discharged on Monday.  

On Tuesday, Dr. Goff made room for her in her busy schedule to see her, which was very nice of her and encouraged Gabrielle a great deal.  Got a better handle on pain control (a huge plus), plus got some valued input as to the next step.  As it looks now, she is a candidate for another trial at M.D. Anderson involving a class of drugs known as check point inhibitors.  We had hoped to get down there this week, but so far that isn't happening.  Maybe the following week.  Meanwhile, I called the research coordinator for the first trial and asked if she could check to see if she could be considered for that one again, since the infection is better and she is doing better.  She seemed interested and said she'd run it by the chief doctor of the study.  But so far no word.  Hopefully by Monday we'll have some news.

So, we're in a holding pattern.  Most likely we'll go back to Houston for one or the other study, but it's a bit of a race against the clock at this point.  After all, she hasn't been on any chemo since May 22, and the cancer is acting up worse than a bunch of junior high kids when the teacher leaves the room.  We just need to get something on board soon.  Conventional treatment here in Seattle is another option, though Dr. Goff said that at this stage, chances of knocking the cancer back are not as good as what may be offered with one of the trials in Houston.

So, we'll know more come Monday.  Till then, I will do my best to stay out of the special Fran's chocolates, try and get caught up on the convoluted plot of the Australian soap opera and try and keep my "chinz up" per Cuzz'n Rob's advice.  You do the same. 

So as the Aussies are inclined to say: G'day, mate!  Let's sure hope we have some "g'days" ahead!

Sunday, July 8, 2018

A little bump in the road upon returning to Seattle

Hi, friends, family.  Here's a quick update as to what's going on.  

Gabrielle and Daniel got home from Houston yesterday afternoon after a difficult few days in Houston (see Daniel's great entry for more details).  Once she got home, she had very little energy and took a long nap in the basement (after having her mandatory visit to the bunnies, one of whom she dearly missed).  We started watching TV, but as I held her hand, it felt like she was burning up, so I took her temperature and it was 102.3.  She was also a little on the spacey side, just staring off in the distance with a glazed look in her eyes, and not even having any interest in the boring Australian soap opera we were watching.  It was almost as if she had had several shots of neighbor Jerry's special raspberry infused vodka...and she doesn't drink.  So Daniel and I took her off to Northwest Hospital ER where we got checked in right away.  Triage nurse didn't even make her go back to the waiting room; they ushered her right into a room because she looked so sick.  It was either that or she didn't want to make the rest of the folks in the waiting room jealous because of Gabrielle's penguin and snowflake jammies she was wearing.  

Had labs and chest X-ray.  No pneumonia, but she had quite an infection with the access port for chemo therapy being the likely culprit.  She got started on two different high power IV antibiotics (Zosyn and Vancomycin).  Sodium was also quite low which is not as simple a matter to correct as you might think.  You don't just eat a mess of French fries and fix things.  She ended up getting admitted, so that's where we are right now: in the hospital.  

I am writing this from the waiting area of the fourth floor where she is staying while she and Daniel have a second crack at that dippy soap opera I alluded to earlier (A Place to Call Home, in case you are curious.  My advice: go straight to a Dr. Blake mystery, if you like Australian shows, but this isn't a Siskel and Ebert movie column, so I better get back on track).  

Overnight, Renée stayed with her while Daniel and I went home to rest, but we came back this morning and have already met with a whole bunch of doctors: infectious disease, hospitalist, two surgeons, and an oncologist and anesthesiologist are on the slate for later today.  She is going to get the infected port taken probably around mid-afternoon today, though we are not sure exactly when.  

Her sodium is doing a little better.  Happily, she is clearing up from a mental status point of view.  Last night she had trouble even remembering what day it was, though she did get it right after some serious head scratching.  It would have been an ideal time to challenge her to a "friendly" game of Scrabble, but I lost my window of opportunity (as you may guess, "friendly" is in quotation marks because she has a "take no prisoners" approach to any game she plays).  She is much better today, though still very weak.  They won't let her eat till after the surgery, but she isn't very hungry anyhow.  Pain is still an issue but they are working on that as well.

We have had excellent care here at NW Hospital.  Everyone from the custodians to the nurses and doctors have all been nice to us.  We are not sure how long she will need to be here, but it will for sure be at least till tomorrow.  She really wants to get out of here and back home so that she can meet with Dr. Goff, her oncologist at the UW, on Tuesday.  We are not sure of the long-term plan at this point.  Clinical trials in Houston are off the table for now, but she may be able to revisit them once she is healthier.

Wish I had better news to report, but that's the way things go.  Ups and downs.  As Cousin Rob likes to encourage me: Chinz Up.  That's the way he spells things.  I don't know how he managed to get through law school with such louzy speling ennyhow.

Signing off for now.  As soon as the pre-surgery anesthesia gets on board, I think I will have another crack at challenging her to Scrabble!

Friday, July 6, 2018

Floods and Fireworks

Hello all! This is Daniel James here, writing on behalf of my amazing mom! I have some updates about her health and the cancer-fighting journey.

My mom and I arrived in Houston on the 4th of July, it was very wet, stormy, and humid. The storms were so bad that it flooded  downtown Houston. Our flight was nearly cancelled, but it proceeded on schedule. The heavy rains flooded the downtown fireworks event, and it had to be canceled (more on that later).  

We were happy to arrive safely, happy that we were on an Alaska Airlines flight which lets you stream some free movies on your phone (one small thing I can be useful for is orchestrating the technology in my mom's life!), and we were happy to be staying at the hotel connected to MD Anderson (which makes getting to my mom's many appointments at the hospital much more convenient because you can just walk over from your room via a vey cool sky bridge). Happy and hopeful was the general feeling upon our arrival. 

We started Thursday of this week with one plan, and by the end of the day things had changed drastically. The plan had been for my mom to go through a few pre-surgery checks and tests, prior to her planned surgery on Friday (7/6) (4 scheduled visits in total). We went to 2/4 visits, which at this large cancer hospital ended up taking almost the half the day (lots of patients here, and your visits never seem to start on time). We were feeling hopeful for our last visit of the day with the study physician, however, we got a call in the middle of visit 3/4 that her labs from that day showed that she had some electrolyte abnormalities, and the surgeon did not feel comfortable operating on her because of those abnormalities. We then immediately were told to meet with the clinical trial physician who gave us very, very disappointing news that he did not think the surgery and the tumor-infiltrating-lymphocyte (TIL) study was a good idea right now. He based this decision off of the fact that she has had worsening pain (suggesting worsening cancer), the aforementioned electrolyte abnormalities, and also she has some redness around her power port (an implanted catheter she has for receiving chemotherapy) that might be an early infection. These three problems-- that all seemed to come up out of the blue-- led him to say that she would not be eligible for surgery or the trial at this time. 

This was very sobering news, as we had all been looking forward with great hope to this surgery and the TIL study which has had really promising results for people with similar cancers. It seems as if the surgery and TIL study are not an option at this point in time. However, the study physician was very clear that she would still be eligible for the TIL study in the future if she was more "medically stable" (i.e. normal electrolytes, no skin infections, and more stable pain). This is good news-- that theoretically my mom could still undergo this trial in the future, if her disease could be controlled better. 

The canceling of her surgery and TIL trial at this time is very disappointing news, and it is hard for us to cope with. We had hoped that this trial was an answer to prayer and a way of treating my mom's cancer is a potentially curative way. I am very sad about this, however I have hope and faith that she may find benefit from additional treatment from her oncology team at the University of Washington. If she responds well to a new treatment regimen at home and has a period of remission or stable disease, that may provide a window of opportunity to return to MD Anderson in a more "medically stable" condition to proceed with the TIL trial.

While it is disappointing, it is good news my mom did not have a bold, risk-taking surgeon who pushed for surgery in the face of these problems. The risks of going into surgery when one has electrolyte abnormalities are much higher, and I am very glad we are not taking those additional risks. 

We are going to head home early (leaving tomorrow), and we will be planning the next steps with her oncology team. I hope that my mom can continue to stay strong through a little more treatment, and that her cancer can decrease in intensity to a point where she could be eligible for this trial in the future. 

As I mentioned earlier, downtown Houston was flooded from storms the day we arrived, and the entire set up for the big fourth of July party was washed away or ruined by water (see picture below). The mayor of Houston had to declare that the festivities were cancelled. After the rains and the floods let up, hordes of people, workers, volunteers (fans of fireworks I suppose), worked together to clean up the mess, and reset the fireworks display. By the time sunset came, they had approximated a stage, and set up the fireworks in a new location, and the mayor announced that the fireworks show was back on! A country musician came to perform, people came out in the mud and rain, and there were fireworks! Despite the floods and storms, they worked together and put on a great show (which we watched part of from the comfort of our hotel room). I couldn't help but reflect on this story and find similarities, as we heard the disappointing news that due to circumstances out of our control, my mom had this wonderful thing cancelled. It sucks. It is hard to deal with the disappointment of something you are looking forward to so much. But like this little fourth of July story, I hope and pray that the "show goes on" for my mom. Maybe after some more treatment, maybe in some more time she will be ready and stable enough undergo this TIL study. 

I am so proud of my mom. She is so brave in fighting cancer like this. One little example of this is when we went in for her labs (visit 1/4 yesterday), they had to take EIGHTEEN vials of blood (10mL each), which is about half of a pint of blood just taken for labs, and they had to stick her arm in multiple places. She sat there smiling, asking all the nurses, techs, students, front desk staff how THEY were doing, and wishing them well. She is truly the most selfless, loving person I know, and it breaks my heart to see her suffer. Those of you who know her knows that the grace and Christ-like love she shows to others is remarkable. She is my hero. 

We continue to pray for God's peace for my mom, our family, and for all of you who worry, hope, pray, cry, love, and care for us and with us as well. We are all so grateful for your support. We are grateful for all of you who give us so much love and support. We are grateful to God for his love, peace, and promise of eternal life through Jesus. Thank you SO MUCH for you continued support, well-wishes, prayers, virtual and digital kindnesses. We are very grateful for all of you. 

My mom, the only person I know who can still smile while getting 18 vials of blood taken from her!

Downtown Houston fireworks set up after severe rainstorms on 7/4/18.

The show goes on! 

Thursday, June 28, 2018

Home again, home again, jiggety jig

Hi there.  Once again, Steve checking in.  

We’ve made it back from our first Houston trip, but it’s almost time to head back down there.  On Monday, Gabrielle got a call from the coordinator that they were able to get a surgery date for the end of next week on July 6, which is sooner than we expected.  All the tests look promising to allow her to be in the study.  The CT scan not unexpectedly showed some growth of the tumors in the liver, but happily that seems to be the main area of concern.  No new sites of metastasis.
Unfortunately, she has to be in Houston on July 5 in the morning to meet with the anesthesiologist, which means that she has to travel on the Fourth of July.  Daniel will be heading down there with her this time.  He got approval from his residency director to allow him to take the time off, which is a huge blessing. 
This trip is anticipated to take about 3-4 days: time to get the surgery, have a couple of days recovery and then tentatively head home on Monday, July 9.  Meanwhile, the sample of her tumor obtained during surgery is going to be whisked away to some lab where they will isolate and grow the lymphocytes.  That process takes about a month, which means that if all goes as planned, she will get an infusion of said lymphocytes in early August.  
So, till then, it’s mainly a waiting game, trying to keep the pain under control, which has not been easy.  She has gotten some new medicines to help with the pain, but it still wakes her up and is a constant “companion”.  Her appetite isn’t very good so she forces herself to eat, but then that makes the pain worse…and I don’t think it’s my cooking, though am not sure about that.  
However, even with the added pain medication, she is still a whiz at Scrabble, beating me by 70 points yesterday.  What’s my excuse?  None.  I am not too proud to admit when I have met my match. 
So, thanks as always for your prayers, support and encouragement during this cancer journey.  I asked Gabrielle if she wanted to write this blog post and she said she did, but then she got distracted and has her nose buried in the Scrabble dictionary, furiously taking notes.  Maybe I can pry the book from her hands eventually.

Oh, I tracked down one more picture from our recent trip to Houston.  Here it is:

Texas, being the land of cowboys, oversized belt buckles and all the trappings that go with Western gear, I thought I would get in the spirit by getting my very own Stetson.  I had to pay extra for the  "Sheriff Dudley" badge, but I think it adds a nice touch to the hat, don't you?  

As that ditty goes:
To Houston, to Houston to buy a hat that's big.
Home again, home again jiggety-jig!

Who knows what I'll come back with after the next trip!  Leather chaps?  Spurs?  A Gene Autry sing-along book?  You'll have to wait and see!

Signing off for now,

Sheriff Steve

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 rains...giving 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 of 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.  It is 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.