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