We got up quite early in order to make an 8:00 AM lab draw, then waited around till chemo appointment at 9:30. Her nurse came out and got her all situated in the infusion bay and said that we were just waiting on the labs. Fifteen minutes later, she came back and said that Gabrielle needed to go to the ER due to high potassium. Sodium remains quite low as well.
What followed was a long discussion with her nurse and the gyn-onc fellow over the pros and cons of another ER trip. Gabrielle got a pained look on her face at the thought of going to the ER or being admitted to the hospital and said repeatedly that she just wanted to go back home. As such, we made a beeline out of there and plunked her down on the couch, where she is resting peacefully. Though at this moment, Daniel is getting her propped up and is about to coax her into eating a little pho from our favorite place on Aurora. Oh, and he got her some tater tots as well! I may have to dig into those!
We have set the wheels in motion for hospice with a focus on keeping her as comfortable as possible. She has told me many times over the years that when the days get miserable and are to be endured, then quality of life is pretty low. I am sad to say that she (we) is at that stage. Has said she is ready to leave this earth and "go home". I am so glad that she has an eternal home to go to. We want to make the trip as comfortable as possible.
Yes, it looks like Gabrielle is on her "bell lap", which she wrote about a while back. Nobody has fought longer, harder or with more determination than Gabrielle. She continues to be thankful for little things and never gets annoyed (except when I hover). She's a real trooper. No wonder she has so many friends.
As always, thanks for your prayers, support and words of encouragement.
Thursday, January 10, 2019
Wednesday, January 9, 2019
1/9/19 Six year anniversary today!!
Today marks six years since Gabrielle was diagnosed. At that time, the five year survival was 20% tops. She's beaten that! Such a strong, strong fighter. Nobody has been fighting harder than her. So proud of her.
I just got off the phone with the scheduler, and they have her slotted to restart the Taxol tomorrow morning. We are really hoping and praying that it will offer some help. I don't think it would be helpful to try an unknown drug at this time, and Taxol has improved things in the past, so we'll see.
As for how she's doing, currently she's snoozing on the couch. She got up at 7:00, which is about three hours early for her. Was having abdominal cramps and pain. Was also chilled. She headed down to the living room where she planted herself on the couch with a heating pad and her "bucky heart" which is something filled with buckwheat that she nukes to keep things warm. She has also had a couple of pain pills. She has not had any interest in breakfast yet.
I am happy to report that for the past couple of days, she has been pretty "with it". Enjoys reading texts and having e-mails read to her. She is quite shaky with her fingers, so finds it hard to answer back. The cough is a touch better. Small things to be thankful for.
Oh, and just for fun, I thought I would toss in a picture of Gabrielle and Renee about 20 years ago. Here they are, standing on the deck of our hotel on Maui, where we went for one of my "business trips".
I just got off the phone with the scheduler, and they have her slotted to restart the Taxol tomorrow morning. We are really hoping and praying that it will offer some help. I don't think it would be helpful to try an unknown drug at this time, and Taxol has improved things in the past, so we'll see.
As for how she's doing, currently she's snoozing on the couch. She got up at 7:00, which is about three hours early for her. Was having abdominal cramps and pain. Was also chilled. She headed down to the living room where she planted herself on the couch with a heating pad and her "bucky heart" which is something filled with buckwheat that she nukes to keep things warm. She has also had a couple of pain pills. She has not had any interest in breakfast yet.
I am happy to report that for the past couple of days, she has been pretty "with it". Enjoys reading texts and having e-mails read to her. She is quite shaky with her fingers, so finds it hard to answer back. The cough is a touch better. Small things to be thankful for.
Oh, and just for fun, I thought I would toss in a picture of Gabrielle and Renee about 20 years ago. Here they are, standing on the deck of our hotel on Maui, where we went for one of my "business trips".
Tuesday, January 8, 2019
1/8/19 A slight rally
First of all, thanks to so many of you who have offered encouragement through your words and actions. Too many to list, but they do indeed help us all remember that we are surrounded by many people who love and care for Gabrielle (and the rest of us). I am sorry if I don't get around to thanking each of you, but I am very grateful for the outpouring of support.
As for Gabrielle, she has done a little better the past couple of days. Has been able to have a couple of conversations, and even wanted to try her hand at Scrabble last night, but she was clearly off her game. Her first word only got her six points, which would be like Jesse Owens running the 100 in 30 seconds (aside: I have started really enjoying making analogies to "ancient" history as it's fun to see the complete blank looks on millennials' faces, like when I said I am only four days younger than Bo Derek). But Gabrielle's hands were quite shaky and we ended up stopping after two turns.
As for her appetite, she ate a little more, but still not much. Cough persists. Is still sleeping now. I expect she will get up in an hour. Yesterday, she actually got up on her own, walked past Renee who was sound asleep on the floor next to her and was at the top of the stairs before we could help her. She hates being helped around, but understands that we do it to keep her safe.
The biggest news is that she has asked us to check with her oncologist about going back on the Taxol. We understand that it has failed several times before, but the goal at this stage is to decrease the "tumor burden". Who knows? It just might help. Lately, it's the only chemo drug that has done any good at all. We sent e-mails to her care team at the UW and they have said that they are willing to try it. They are looking into scheduling it now. It's clearly well beyond a Hail Mary pass. We all have our eyes open and very realistic expectations. But Gabrielle is not ready to sit back and go to "comfort care" just yet. I both admire her fighting spirit, and am worried about its effects on her.
At this point, we don't even know if her labs will be good enough to get the Taxol. But, if so, then she may get a dose later this week. As for me, my big goal is for her to have the best quality of life she can with the remaining time she has with us, whatever that entails. If Taxol can help her achieve that goal, then bring it on! If not, then we will be accepting of that.
Update. She just got up and has had a few sips of a smoothie that Daniel made and is asking for cheese and tomato on toast. Right now, she is reading some texts on her phone. She likes doing that. May not necessarily be able to respond, but she is encouraged by the kind and supportive messages.
As for Gabrielle, she has done a little better the past couple of days. Has been able to have a couple of conversations, and even wanted to try her hand at Scrabble last night, but she was clearly off her game. Her first word only got her six points, which would be like Jesse Owens running the 100 in 30 seconds (aside: I have started really enjoying making analogies to "ancient" history as it's fun to see the complete blank looks on millennials' faces, like when I said I am only four days younger than Bo Derek). But Gabrielle's hands were quite shaky and we ended up stopping after two turns.
As for her appetite, she ate a little more, but still not much. Cough persists. Is still sleeping now. I expect she will get up in an hour. Yesterday, she actually got up on her own, walked past Renee who was sound asleep on the floor next to her and was at the top of the stairs before we could help her. She hates being helped around, but understands that we do it to keep her safe.
The biggest news is that she has asked us to check with her oncologist about going back on the Taxol. We understand that it has failed several times before, but the goal at this stage is to decrease the "tumor burden". Who knows? It just might help. Lately, it's the only chemo drug that has done any good at all. We sent e-mails to her care team at the UW and they have said that they are willing to try it. They are looking into scheduling it now. It's clearly well beyond a Hail Mary pass. We all have our eyes open and very realistic expectations. But Gabrielle is not ready to sit back and go to "comfort care" just yet. I both admire her fighting spirit, and am worried about its effects on her.
At this point, we don't even know if her labs will be good enough to get the Taxol. But, if so, then she may get a dose later this week. As for me, my big goal is for her to have the best quality of life she can with the remaining time she has with us, whatever that entails. If Taxol can help her achieve that goal, then bring it on! If not, then we will be accepting of that.
Update. She just got up and has had a few sips of a smoothie that Daniel made and is asking for cheese and tomato on toast. Right now, she is reading some texts on her phone. She likes doing that. May not necessarily be able to respond, but she is encouraged by the kind and supportive messages.
Sunday, January 6, 2019
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.
Saturday, January 5, 2019
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.
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.
Friday, January 4, 2019
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.
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...
Thursday, January 3, 2019
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!
Subscribe to:
Posts (Atom)