Monday, December 31, 2018

12/31/18 New Year's Eve Day Morning

Gabrielle had a quiet night last night, which continues as of this writing.  I am sitting by her bed and am listening to the steady, gentle breathing of someone sound asleep.  It is much better than just before bed last night when she was coughing a lot.  She isn't sick.  I suspect the coughing is due to a combination of fluid in the lungs as well as some gastric reflux.  Yesterday, she had several periods of nausea that came on suddenly, but we were able to get things to quiet down with the right combination of medicines.  We are also trying to stay ahead of the pain with varying degrees of success.

Yesterday, we lost power for about 12 hours due to a freak lightning strike to the power pole in our front yard.  We kept Gabrielle warm with loads of blankets and firing up the gas fireplace.  Afterwards, taking advantage of a brief break in the clouds, and with a promise of heat in the car, we drove down to Edmonds for a short walk along the fishing pier:

She was worried that people would laugh at her because she had her jammy pants on.  As for me, I was worried that someone would tell her to head back to Fargo with that hat she was wearing, but she was warm and toasty.  

When we got home, we were greeted by her sister and brother-in-law Marti and Merle who brought us Pagliacci pizza and had a nice visit.  Gabrielle then suggested a round of canasta where she proceeded to clean our clocks (three canastas as opposed to none for any of us), and then wisely quit while she was ahead.

We have managed to do the home fluid drainage using the port which was placed on Friday.  We have it down to a system where Daniel is the "surgeon" and one of us helps him hook up the tubing and other paraphernalia.  We have been getting 2 liters of fluid off per day!  I don't like to see it build up that fast, but it is nice to see that we can get her some relief without having to go and sit in an emergency room waiting for a procedure to get done.

It was great to see her a little less foggy yesterday.  Also with a slight increase in energy level.  However, the pain and nausea are concerning as they are never far away.

Her next appointment for chemo is on Jan. 3.  We just don't know how she is going to tolerate it, or even if it is helping much.  Praying for wisdom about the next step.

Here's wishing all of you a great New Year's Eve and coming New Year.  

Saturday, December 29, 2018

12/29/18 Back home

It's Saturday morning and Gabrielle is still sawing logs.  It's so nice to see her rest peacefully.  It seems that when she is asleep, it's the only time she is not in some level of pain.  She did indeed have the procedure done yesterday: placement of the abdominal catheter so we can drain the fluid on our own.  It took much of the morning yesterday and then she came home and slept, which I suspect was a combination of lousy sleep the night before and the IV sedation they used to send her off to "twilight sleep".  After her afternoon nap, the pain got worse near the procedure site.  We're chalking it up to the fact that her abdominal wall muscles got a pretty good working over during the port placement.  Every time she tensed her tummy muscles it hurt more.  But, eventually, we were able to quiet things down to a manageable level with the right combination of heating pads, pain medication and a little diversion via some TV shows.  

Lately, her energy level has been pretty low.  She rests and sleeps a fair bit.  Is quite weak as well, which is understandable, as she has been eating only a few bites of each meal.  Daniel made some amazing chicken with cherry tomatoes last night, which she enjoyed.  I am trying to tempt her with some homemade sourdough pancakes for breakfast.  Let's see how things go.

Right now, she is at the point where we don't like to leave her alone, for fear of her falling.  She has periods of confusion as well, so we like to make sure we are there to help her with any tasks she may be trying to do, whether it be brushing her teeth, or getting dressed.  We have settled into a bit of a routine.  When she wakes up, she settles into the couch in the living room and likes to look at the Christmas tree and the fire.  With the right combination of pillows, blankets and a heating pad, her pain is manageable.  We try to get her interested in food or drink, with varying levels of success.  After that, she'll head to the basement where she likes to watch cooking shows of all things, especially the British Bakeoff ones with Paul and Mary.  I still can't figure out why she watches them as she has no appetite, but it works for her.  As an alternate, Daniel rented a great movie that I tried to get her to watch.  I told her it was an adventure film about a canoe trip down a scenic river in Georgia, full of fun outdoorsy scenes, great banjo music and Burt Reynolds...what's not to like about that?  She asked what it was called.  I said, "what's in a title anyway?"  She still preferred Baker Paul Hollywood to Burt from Hollywood.  Go figure. 

I hate to see Gabrielle suffer so much.  She has the highest pain tolerance of anyone I know.  She needs to be prodded to take medicine to help control the pain, as she doesn't like the side effects.  She never, ever complains and has cheery smiles and "thank you's" when we do simple things to make her more comfortable.  I admire her so much.  Here's hoping for a better day today.

I have to end by saying that I have been very thankful that my bosses and colleagues at work have been so kind and understanding.  I have had my shifts covered for the next week, which has been a real godsend.  Oh, and one more thing:  how about them Cougars?  It wasn't the Rose Bowl, but they did themselves proud!

Wednesday, December 26, 2018

12/26/18 Boxing Day...or as I prefer to call it: The Feast of Stephen

Hello, friends.

Perhaps the first title is more appropriate than the second one, as Gabrielle feels like she has been in a boxing ring for the past 24 hours.  I am writing this from the telemetry unit of NW Hospital where Gabrielle spent the night.  Yesterday, in the early afternoon, her pain was so bad that she said she couldn't stand it any more and had us take her in to NW ER.  Where they took great care of her, getting her pain under control, and then draining, yet again, massive amounts of tummy fluid...another 5.4 liters, which had accumulated in only three days since the last time she had it taken off.  Had planned to go down to the UW today to have an indwelling abdominal catheter placed so she could drain fluid at home, but last night's admission derailed that.
She has been in worsening health the past several days.  She made a very brief appearance at Oliver and Julianne's party on Saturday, but had to skip my mom's big holiday bash at Anthony's in Kirkland the next night, which was a huge disappointment as she had been looking forward to it for quite some time.
In addition to the pain, she was fairly confused last night, but that has improved a little.  Daniel and I just finished taking a lap around the floor and now she is back in bed resting.
As of now, we are still waiting to see the doctor to come up with a plan for the day.  She would like to go home, but we aren't sure yet.  
Her appetite is very low, and is only drinking small sips of water.  She even turned down some homemade sticky buns which I snuck in.  Happily, they didn't go to waste, as it is the Feast of Stephen after all.  More updates as they trickle in.
Appreciate your prayers and kind support.


Doctor came in and was pleased with her progress overnight.  Pain level is down and she got the OK to be discharged to home, which is great.  They had thought of getting the port placed today, but it was decided to get it done on Friday here at Northwest as an outpatient.  Right now, we are waiting for her to be unhooked from the IV and get discharge papers.  Then it's back home where we might just pretend that it is still Christmas and open the rest of the presents.
Looking forward, big goals are for persistent improvement in abdominal pain, better appetite, for things to get "moving", if you get my drift, successful abdominal port placement on Friday so we don't have to keep making return trips here.  Next chemo appointment is Jan. 3.  
We are thankful that she improved so nicely.  For a while, there was some concern that the abdominal fluid was infected which would have been quite serious.  Happily it was not, so she can stop her antibiotics.
Resting quietly now.  As for me, pardon me while I resume my Feast of Stephen.  To quote good King Wenceslas: "Bring me flesh and bring me wine, bring me pine logs hither!"

Thursday, December 13, 2018

12/13/18 Merry Christmas 2018

Merry Christmas to all!

Gabrielle here with the latest updates in my cancer journey.  I am at chemo right now with Steve getting my second dose of a long-shot drug called pemetrexed (common name Alimta.)  It was designed to treat lung cancer but has a 10-20% response rate for ovarian cancer patients. 

A big problem I have is continual build-up of fluid in my abdomen, ankles, feet and legs.  They stick a big needle in my side and drain the fluid.  I had 5-1/2 liters drained last week and four liters drained this week and have to wear compression knee socks.  Sometime in this coming week they will insert a plex catheter in my side so that I can open the spigot and take off a liter of fluid at home every day so it doesn’t grow into such a lot of fluid that it adds to my abdominal and back pain.  We are working on lessening stomach, back, and foot/ankle/leg pain so I can resume normal 1 hour walks.  Yesterday, I did a 30 minute walk which is a start!

I have had some bouts of explosive diarrhea, which keeps me pretty close to home many days, but we tested it and are grateful it’s not C.diff, a nasty colon infection.  Thank you Lord!  And it is going away at last.

Our focus right now is treating symptoms and pain in an effort to have as good a quality of life as I can.  Lately I’ve been a bit down, feeling like suffering is outweighing joy.  When you feel like that, it is hard to keep fighting.

I do have a strong feeling that this is my last year (or several months) of life on this earth.  Have been thinking about lasts—and firsts.  Last Christmas—the beauty of the tree at night with the lights off, Steve’s Christmas breakfast caramel pecan rolls.
Last anniversary (on the 18th—36 years).  Last New Year’s Eve, last birthdays—will I make it to my 59th on Feb. 18?  Will I make it to April 1 for Daniel’s 29th?  Etc.

But then I’m thinking about firsts.  First step into heaven, meeting Jesus and being greeted by all my Christian friends who arrived before me.  First days of no pain, no tears or sadness, and exploring all the glorious beauty there that awaits me.  No more medicines or pokes or chemo or scans and procedures.

We are are not sending Christmas cards this year, as we are vastly simplifying Christmas because of all we have going on.  So let me send our warmest Christmas wishes for a celebration focused on Jesus, who came to save us, who never leaves us or forsakes us such that we are never alone—even through cancer, and other sufferings, such as grief over the death of a loved one—we can remind ourselves that we are not alone. Our Heavenly Father walks in front of us, the Holy Spirit is behind us, and Jesus is by our side.

Thank you for your love and prayers.  You are dear to us.  May your Christmas be filled with Joy.  Immanuel—he is with us!