1/6/19 Sunday morning update

It’s just after 6:30 and I’ll be heading out the door to go to work soon.  It’s hard to even think about work, but I need to go in for a variety of reasons.  For one, I want to be able to give the kids time alone with their mom.  She doesn’t need three people hovering over her watching her sleep, though she does like it when I am around.  I leave knowing she is in good hands.  Daniel spent the night on the floor next to her, and Renee will show up in a couple of hours.  

But I wanted to give an update before I dash off. Yesterday, Gabrielle was pretty sleepy and “out of it” for much of the day.  She continued to cough, even after she got up and tried to move about. Extent of her activity was walking down to the basement to watch TV, then going back upstairs to “take a lap” around the main floor, then head upstairs again.  She was a little confused, which was sad to see, because the previous day, she was quite alert in the hospital and had some good conversations with nurses, doctors and us as well.

As you may suspect, there is no chore list for Gabrielle.  No riding lawn mower.  No chiding her for not getting her silly tasks done around the house.  I write things like that as a bit of a defense and to try and inject a little levity, albeit somewhat dark, into a very depressing situation.  This morning the mask is off.  The truth of the matter is that she is getting sicker by the day.  Sometimes, she will rally, but the general trend is not looking good.  We all pray for wisdom to be aggressive enough to treat correctable problems such as low sodium or dehydration, while at the same time not putting her through a series of unnecessary or even harmful interventions, trips to hospitals and the like. It’s not always easy to tell the difference on the front end.  That’s where the wisdom to know the difference part comes in.

She barely eats anything.  Yesterday’s total was a few bites of waffle and then some pineapple yogurt from Menchie’s.  She was alert enough to ask Daniel to mix it with some plain vanilla when he was getting it. Drinks a little water, but not much. She has lost a lot of weight.  You get the picture.

Yesterday, I read some Bible passages to her from Jeremiah about God taking away our mourning (31:13), selections from the Psalms about God helping us when we call out to Him, and parts of I and II Corinthians about love, keeping our treasures in jars of clay and Paul’s vision of heaven that was too wonderful to speak about.  She smiled and listened intently.  Daniel played some Michael Card selections for her while he gave her a foot massage as Renee and I looked on, each working our own crossword puzzles (I finished mine, but I had Friday’s and she had Saturday’s). 

I just popped up to check on her: she was doing a lot of coughing, so I gave her a dose of cough syrup, kissed her goodbye and told her I’d be back later this afternoon.  She smiled.

1/5/19 Early discharge!

We had an unexpected early discharge from the hospital late yesterday afternoon.  She had gotten some IV fluids as well as an attempt at a salt pill which she promptly threw up.  The chief resident came in and talked to Daniel and Renee while I had stepped out for a short walk.  She said that they wouldn't do much as far as interventions overnight, such as more fluids or medicines, so it was decided that there was no reason to stay through the night just to have labs drawn in the morning.  Boy, did we get out of there in a hurry before they changed their minds!

Big issue now continues to be the coughing.  We have every cough syrup under the sun and then some.  Isn't sick, just has a moist cough.  It is a little better when she is sitting upright.  She just woke up about a half an hour ago and is all nestled into the easy chair next to the fire.  I just fed her about four bites of strawberry waffle, which is what she was wanting yesterday from the UW food services folks but had to settle for blueberry pancakes instead.

Yesterday, she was quite alert and "with it" and was able to have some pretty involved discussions with the doctors.  Not quite up to speed yet today, but we are hoping that she'll perk up.  She is not complaining of any pain, so that's good.  She is just so happy to be home.  We hope that she doesn't have to go back to the hospital and we are trying our best to manage her symptoms here at home.

Her oncologist didn't think the current chemo was doing any good, and said at this point it would actually be harmful for her (CA 125 is rising), so it looks like she won't be getting any more chemo, though we aren't 100% sure on that.  However, the focus is on keeping her comfortable, and I am happy to report that right now, with a belly full of homemade food (if you call 4 bites "full"), a peaceful living room, no chores I need her to do till the riding lawn mower arrives later today, we're doing all right.  It is nice to see her resting peacefully.

More updates as they trickle in.

Steve

p.s. A brief note to my medical friends.  You may have noticed the treatment for the low sodium in the previous blog involved eating salty food.  Sodium levels are way more complicated than that and often pertain more to water balance than actual sodium intake.  However, this is a situation where her doctor felt more sodium would be the right approach.  "Hypovolemic hyponatremia" as she called it.  I'm just adding this, so you don't track me down at work to tell me not to give her potato chips.  Besides, I like to lead by example, so to encourage her to eat the potato chips, hot dogs, salted soft pretzels, I need to show her how it's done.

1/4/19 Hospital day #2

She is now on hospital day #2.  Really wants to go home, but her sodium level is too low for her to be safely discharged.  Plan is to treat this with IV fluids and salt pills to see if the number can come up with a tentative plan to head home tomorrow.  Interestingly, the doctor has also encouraged her to eat salty foods.  To that end, Renee just got back from a Schultzy's run with a hot dog and a bunch of shoestring fries.  How's that for following doctor's orders?  
We had thought she was going to get some fluid drained from her lungs this morning.  However when she went down to the interventional radiology suite, they did not see much fluid there at all.  Current thinking is that the X-ray from last week showed “pseudo fluid”, as best as I can tell.  I think that means that the diaphragm was so “smooshed” upwards from the abdominal fluid that it gave the appearance of a lot of fluid when there wasn’t any there. But then again, I’m a little punch drunk sleepy so I may not have heard the doctor right.  At least I’m not in another virtual meeting.

As for how she is doing, well I’ll tell you: she is resting peacefully with her much beloved Frasier in the background (current episode: he has been having dreams about a male co-worker and his brother (also a psychiatrist) is trying to analyze all this, just in case you wanted to know).  When I get my chance to pick, it’s old Twilight Zone or Alfred Hitchcock Presents episodes.  But back to her, which is what this blog is about: she is coughing in fits and starts.  Breathing is OK much of the time.  

I spent the night last night, and I can honestly say that it was the most peaceful hospital stay I have ever experienced. Mind you, we’re comparing this to other hospital stays, not the Marriott or even Motel 6.  But I would say it was quieter than those cheesy motels on Aurora North, or so I've been told, never having had the pleasure of staying in one myself.  Doctor put in an order for us not to be disturbed at night, so she could sleep (Gabrielle that is, though I am sure the doctor was happy to get some sleep too).  It was a welcome change from 2:00 AM, “wake up Mrs. Dudley, I need to check your temperature!” from last visit. 

Gabrielle remains quite sleepy and a little foggy, which the doctor attributes to her low sodium.  Hopefully that will clear up as well when the sodium corrects.  However, the big picture is that her health is declining in spite of the treatments she has submitted to.  Cancer is indeed advancing, with a rising tumor marker, continued fluid buildup, and abdominal pain.  Her big goal right now is to be comfortable and at home.  We feel so blessed that our home is comfortable and she has nice couches and easy chairs to plant herself.  As a coming home present, I have am surprising her with a riding lawn mower, giving her one more thing to sit on.  Next up: a cherry picker so she doesn’t have to climb the ladder to take down the Christmas lights.  I think we can all agree that Christmas lights left on houses well beyond Christmas are kind of tacky, so that's on the "must do" list.  

Thanks again for all your prayers, encouragement, etc. Now, if you’ll excuse me, I either need to sign in to a virtual meeting or take a nap.  Can’t remember which.  Or I suppose I could tackle those Christmas lights...

1/3/19 A little hiccup in today's chemo

Today’s “chemo” session turned into an admission to the hospital due to Gabrielle’s worsening breathing issues.  She is starting to collect fluid on her lungs as well as her abdomen.  They had tried to get this done as an outpatient, but radiology wasn’t able to do it. As such, she is in the hospital and will get the procedure tomorrow morning.  Her electrolytes were also off, especially her sodium.  She hasn’t been eating or drinking much, and we are hoping that she will get a little better hydrated through her stay at the hospital.

Her oncologist came by today and they had a nice chat.  We are pleased with the team she has, which is good.  We really hope that she will be able to get discharged from the hospital after tomorrow’s procedure.

We are “tag teaming” the hospital stay, as we have found that it is always nice to have someone stay with her while she is in the hospital.  This is both to keep her company, but also to help with things like calling for the nurse, taking sips of water, losing to her at Scrabble.  Fun stuff like that.  So, as part of the tag team approach, Daniel and Renée are down at UWMC with her now.  I am at home and am multi-tasking at this moment.  I am “attending” a meeting via a teeny little screen in the upper corner of my computer.  This pertains to my role as a faculty member at the med school.  A student has been assigned to me for the next six months and they are getting me up to speed on this.  I hope that I am up to the task, in light of everything else that is going on. 

I don’t have much else to report right now. But I will try and give an update tomorrow.  Here’s hoping for a quiet night…and success at Scrabble.  Forgive any typos…they are making me listen to the meeting.  Gotta love meetings! 

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.  

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!

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.

Update:
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!"