Friday, July 27, 2018

7/27/18 Chemo day...a long one!

Today goes down on record as the looooooooongest chemo day ever!  Her appointment was at 11:30 and just went on and on, just finishing at 8:00 PM!  Can you believe it?

When we were sitting in the waiting area, she asked me if I brought the Scrabble along.  I told her I forgot.  Then she asked if I could download it onto my phone...apparently she was chomping at the bit to get back at me, having lost to me by 5 points last week.  

As for the chemo marathon, here's how it went: started out with a bag of IV fluids, which took two hours.  Afterwards, due to a low blood count, she got a unit of blood, then the chemo (Taxol) and some magnesium, followed by another unit of blood.  Each unit of blood needed to drip in for two and a half hours and the Taxol, about an hour.  Of course, there was "down time" in between that stuff dripping in: getting the IV placed in her arm, premedicating her for the chemo, checking vitals and then checking them again.

Through it all, she was a trooper and kept wondering when she could leave.  We kept telling her "in a little bit".  During this marathon session, she napped, dozed, snoozed and watched a little Frasier and the Great British Baking Show.  As for us, well, we took turns stepping out for a little fresh air, but for the most part stuck with her through it all.  She stayed cheerful throughout this marathon day and even took time to ask our nurse about her summer plans.  She's like that: always taking an interest in others.

As soon as she got home (8:40), she just rolled into bed, one very tired, chemo patient.  She is off in slumberland now with Renée watching from the chair next to the bed.  

Sadly, she has been pretty foggy throughout the latter half of the day.  We are hoping for a better day tomorrow.  We are all a little shell-shocked over the rapid change in her health, especially the weakness and confusion.  We had thought that it would be more gradual.  Less than a week ago (last Saturday, to be exact), she and I had a nice walk at Edmonds Marina Park (pix below), and the weekend before that, she and I splashed around in Lake Washington on an inner tube.  See how cheerful she looks!  I don't know why I look so serious on the inner tube, I was having a great day (I think I was busy saying, "don't take the picture till I'm done peeing").

                                                     Beauty and the Beast (or Aquaman)

                                                   Edmonds Marina Park six days ago

                                  My one true love

Wednesday, July 25, 2018

7/25/18 Update after visit with oncologist (how's that for a creative title?)

Hi, folks.  Steve checking in.

Her visit with Dr. Goff went well this afternoon.  We discussed all the options, which mainly boiled down to two:  chemo or no chemo.  Houston is off the table as she is too ill for the trip and the rigors of the trial.  There are pros and cons to each option.  Chemo is very hard on her.  But it has the potential to help.  The "no chemo" approach would focus on keeping her comfortable and minimizing suffering.  After much discussion, she (we) opted to try a little more chemo with the full understanding that at this point, it is mainly to shrink the tumor size, not get her into remission.  A lot of the pain is coming from a swollen liver, and the hope is that if the tumors are even a little bit smaller, then the pain won't be as bad.

She is slated for another round of Taxol on Friday (two days hence, assuming I get my days correct...though one is never sure these days (have been up since 3:30)).  

Today, after her oncology visit, she got a liter of IV fluids as she really has not been drinking much.  She perked up quite a bit.  The current thinking is that the fogginess was a combination of dehydration and liver involvement which can cause confusion.

When we got home, we were treated to a wonderful cooler of goodies including dinner, yogurt and blueberries from Karissa and Jon.  Apparently some squirrel (or other varmint) thought so too as the top of the cooler was gnawed all to bits (see pix below).

She is much clearer today than yesterday, and I would be willing to bet that she has a better handle on what day it is than I do.  She even picked up her phone for the first time in three days to check her messages.  Go ahead and text or e-mail her if you like.  I am not sure if she will answer, but I'm fairly sure she'll read the message.

She chided me for trying to help her eat dinner, telling me in no uncertain terms that she could do it herself.  She also shouted directions to Daniel in the kitchen on how to tweak his homemade clam dip:  "how many cans of clams are in here?  You need more!  And a touch of onion powder.  And a little more cream cheese!"  It's good to have the old Gabrielle almost back.  

She is still quite weak and unsteady on her feet.  She doesn't like us "hovering over her", but is also very good natured about it and knows it's for her own good.  

Thanks for your prayers.  

And now the pix.  Here's what greeted us on our porch when we got home:

Hungry squirrel...either that or a woodpecker with a lot of fortitude.

And here's the payoff!  Granola, Greek salad, wonderful beef kabobs, pita bread.  Even whisky cherries (they must have a special tree!).  I wonder what exactly the squirrel was after.  I am hoping it wasn't the amazing kabobs as that would mean we've got carnivorous squirrels (or woodpeckers...oh my!) in the neighborhood.  And if that's the case, we've got bigger things to worry about than cancer.  Cue Hitchcock's The Birds!

7/25/18 Tuesday...I mean Wednesday!

Gabrielle remains about the same, though perhaps a tad more lucid.  She was asking for her glasses so she could read something, but quickly said "no" when I asked if said reading material could be a Scrabble game.  Likewise, when asking for the paper, she sneered when we offered up the sports section.  Ultimately, she sat back, very relaxed and smiled and listened attentively as I read the Bible to her: mostly selections from the Psalms which she had underlined (aside: there's some good stuff in there!).  

She actually had a decent breakfast: scrambled eggs, toast and raspberries!  Yummers!

She had a fever last night and drenched the sheets, making us wonder if some of this is due to an infection.  We had toyed with a return trip to the ER to get a second look.  However, we are going to stick with original plan and see her oncologist today at 1:00.  We are not sure what will happen at the appointment.  It's possible she'll be admitted for some IV fluids and antibiotics, if she does indeed have an infection.  Though that is mere conjecture on my part.

However, the big picture is such that she is no longer a candidate for the trials in Houston, and is most likely not going to be getting any more chemo.  Both because it hasn't been helping, and the toxicity from the chemo has been hitting her system pretty hard.  At one point recently she told one of the kids, "I'm done".  We all agreed that she has put up a great fight.  Now it's time to rest.  We can see the big picture.  But it's still not pleasant going into her bell lap which she wrote so eloquently about a few months ago.

Pastor Bryan (the same one who married Renée and Riley) will be coming by for a visit soon.  After that, it's off to the doctor.  

As always, thanks for all your support.  It has been a rough week.


Tuesday, July 24, 2018

7/24/18 Back home

We are back home now.  The doctors still aren't sure why she was so confused yesterday.  She definitely perked up with some hydration, but it looks like there is something else going on, such as declining liver function.  When we got her home, she slept on the couch till we prodded her to get up and eat about five bites of dinner (quesadillas and guacamole) and then went to bed, where she has been for the past 11 hours.  

At this point, things don't look very good, and it has all been so sudden.  We are still processing the rapid turn of events.  One minute, we're on our way to Houston for a clinical trial, and the next we're in the ER at UW talking palliative care.  Let's hope for a better day today.

No visitors please.  

Monday, July 23, 2018

7/23/18 ER update

After spending most of the morning and afternoon in the ER, she is about to be discharged.  They gave us the option of being admitted for further workup, or heading home.  Gabrielle strongly wants to head home and has been chomping at the bit to get out of here.  She has had some labs (slight worsening of liver tests), head CT (no brain bleed), and a liver ultrasound.

Nurse just came in to unhook the IV, so I gotta run!  We're heading home in about 10 minutes.  So glad we didn't go to Houston today.  The labs here indicate that the liver tests alone were not at the level they would like to have for the study. 

I challenged her to Scrabble, but the kids said that I would have an unfair advantage.  What's wrong with that, I ask??

7/23/18 Houston is a "no go"...

Steve here with another quick update.  We had planned to go to Houston today.  However, when Gabrielle woke up, she was in no condition to fly: confused, very shaky.  I spoke with the trial coordinator and relayed my concerns.  After seeing how she looked, we (mostly me) made the difficult decision to cancel Houston and make a beeline for the UW ER instead.  She was immediately taken back to a room, and was quickly surrounded by nurses and the ER doctor (a former classmate of Daniel's).  Right now, she is dozing while we wait for labs and a plan to be formulated.

At the very least, it looks like she is going to be admitted to the hospital.  I don't know much more at this point.  Will keep you posted.  

Looking at how she is right now, she would have been in no condition to fly anyhow.

Please, no visitors at this point.  It is all pretty overwhelming to have all this happen so dramatically. Don't take it personally if we don't respond to texts right now--there's a lot going on and we're running on fumes. But know that we appreciate your prayers and well wishes.

Thursday, July 19, 2018

7/19/18 Houston is a "go"!

Hello, friends.  Quick note on Gabrielle.  She had her labs done today and they are good enough for her to proceed with the trial down in Houston.  This is the trial which involves check point inhibitors.  In particular, they wanted to make sure that her liver tests weren't too far off, and they weren't.  There are some abnormalities on the tests, but not enough to put the brakes on the study.  I spoke with the coordinator today and she said that things can proceed, which is something we are delighted about!

We fly out on Monday the 23rd (Gabrielle and Sheriff Steve this time), and will return on Saturday, July 28th.  She will have a couple of days of testing, meet with the doctor on July 26th in the morning and then get the infusion of the drug in the afternoon, then one day to rest before flying home.

Till then, we are biding our time around the Dudley household.  Gabrielle's appetite has still been quite poor...and it has nothing to do with my cooking!  She didn't even finish her ice cream tonight.  She rests a lot, but when she does, she is peaceful.  Yesterday, we played Scrabble, and I finally won a game!  But only by a few points.  I almost felt guilty for winning when she was so sleepy and woozy from her pain meds, but not guilty enough to let her win, that's for sure.

I don't have much else to report, but wanted to let you know about the labs.  I will try and update you next week from Houston, or if any of the following take place before then: I cook something new on my car's dash (supposed to be hot this weekend), I win a second game of Scrabble in a row, Gabrielle starts eating my cooking, I manage to stay awake during the Aussie soap opera, or if my "Cuzz'n Rob" larns to spelll enny bettor than he duz now.  

Thanks for the prayers, and all your support in so many ways!


Tuesday, July 17, 2018

7/17/18 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

7/14/18 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 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

7/8/18 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

7/6/18 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!