Back from the Hospital

Jake here with another update.

Nancy had a good 3 days in the hospital, where her doctor and nurses were able to determine the right medications and dosages to ensure she remains comfortable. She was discharged from the hospital this afternoon and was VERY happy to be home. She is feeling soooooooo much better now than she did last weekend (or than at any point over the past month). The key change from before is the fact that Nancy now has a portable IV pump to continuously give her pain medications. A couple of anti-nausea medications will be given through her IV as well.

We’re with a different hospice provider now, and we’re awaiting our first visit from the nurse who does the intake process. She will train me how to administer the other 2 anti-nausea meds through her IV… Really she is continuing the training we started with her inpatient nurse right before she was discharged. We’ve spent so many years observing the process every week when she received chemotherapy that it is easy to pick up.

Nancy is feeling so much better that I’m expecting a very different daily routine. Her diet won’t be limited to a few spoonfuls of Jell-O or soup. She will probably be awake more. She’s going to be in a better mood since she’s not living in misery. I’m looking forward to tomorrow to see what the new normal is. Of course we’ll have to ease into it so she doesn’t overdo it. We’re both so grateful to Nancy’s oncologist for following up with us and then advocating for the change.

One positive constant throughout her hospice care has been the continuous stream of cards for Nancy. One of the highlights of the day during her hospital stay was mail call. She loves to hear from you, so feel free to keep sending her your notes of encouragement and love! We don’t have much space left on the dining room table, so I’m thinking about our spillover options. I’ve attached an updated picture of our card real estate situation. Oh, and you’ll notice another side table with a card placed on top. Since I received my first card (thanks, Kris!), I figured I needed my own card table!

Back in the Hospital

This is Jake with another update. Nancy continued feeling miserable through the weekend. Last evening, her oncologist and her oncology nurse came by the house to check in on Nancy. Nancy shared with them her level of discomfort, and her oncologist immediately came up with a plan. The doctor wanted to take more direct control of Nancy’s comfort care, so she had Nancy admitted to an oncology unit in her hospital. We arrived at the hospital early this afternoon and went immediately to the room. Nancy’s oncologist arrived shortly after we did (on her day off) to get her care initiated. Nancy felt some immediate relief with IV pain medication, and we both feel a deeper sense of relief knowing that her doctor has made it her #1 priority (or so it seems to us) to ensure Nancy’s comfort.

The plan is to get the medications and amounts adjusted to make sure her comfort can be maintained. And then we’ll go home with revised drugs and dosages. We’re anticipating that will be Thursday or Friday.

One of tricks Nancy has learned from her numerous hospital stays over the years is to bring a small picture or two from home to place on your bedside table. As we were packing for the hospital, Nancy noticed that the picture she usually brings was dated. She wanted a more recent picture that included our current bulldog (Jojo) and my current hair color (distinguished), so I scrambled this morning to find and print a picture.

Old and New Pictures & Orchid from Swedish Foundation

Nancy Continues Feeling Sick

Jake here. We’ve been back from the hospital for nearly a week now. While she hasn’t had a repeat of the particular discomfort that resulted in the inpatient stay, Nancy has been feeling pretty miserable. She’s experiencing nausea and stomach discomfort in what seems like a continual cycle, and her energy level continues to be quite low. I’ll continue working with the hospice care team to see if there’s anything else we can do to make her more comfortable. Our nursing visit this week resulted in a few additional ideas for meds and diet, so we’re implementing those now.

I tend to be upbeat and optimistic in my communications, so I find it difficult sharing a message that leaves little room for cheer. I’ve been procrastinating with a blog update in the hope that I’d have better news to share. Nancy has mentioned to me on occasion that I should be straightforward in my updates, so I’m fighting my nature to do just that.

Every morning, I look forward to walking Jojo and picking up the mail. As I trudge up the driveway, I enjoy flipping through the cards and noting the return addresses. While reviewing each, I spend a moment thinking about and being thankful for the sender. I’m struck by the number of different groups of friends and family from all over the place. Nancy has received cards from Germany and Australia…the love for Nancy is worldwide! Through these notes of love and encouragement, we’re both filled with a deep sense of gratitude for having such a rich set of relationships with a wonderful group of people. The outpouring of support from a broad set of friends and family reinforces to me the simple but profound truth I’ve learned from Nancy: Our relationships are everything. 

The support from our family has been incredible. Parents, brothers & sisters, aunts & uncles, nephews & nieces, and cousins. And the list of friends serves to me as proof of a life well lived. Nancy’s middle school/high school friends from Arkansas, our friends from working as consultants in Cincinnati (where Nancy and I met), Bible study friends, friends from each of our college experiences, a huge set of friends from our UW Medicine workplace, Nancy’s Team Survivor Northwest mountain climbing friends, friends from previous jobs, Nancy’s friends from the networking and support boards at www.breastcancer.org, and on and on and on. We are truly blessed.

We're going to need a bigger table!

Back Home Again

Jake with another update.

The care team at the inpatient hospice facility was able to improve Nancy’s comfort level, and she was discharged this afternoon. We have some revisions to her medication plan, and we now have a diet plan. Nancy seemed to enjoy the Jell-O provided at the hospital, so it looks like I’m going to be adding a Jell-O-making task to my list of regular duties. That one seems more fun than making juice popsicles, but not quite as much fun as crushing ice.

Nancy’s spirits are good. She’s glad we made the decision to get admitted and address her discomfort. The inpatient facility is located in Kirkland, a city that holds a special place in our hearts. Nancy bought a condo in downtown Kirkland in 1998, and I moved in with her (and Rose, our first bulldog) after we married in 2001. The 3 of us lived happily there until we bought our current house in 2004. We don’t make it back to the old neighborhood much, so I decided to take Jojo (bulldog #2) for a walking tour while we were waiting for Nancy to be discharged this morning. After giving Nancy a report of our adventures in downtown Kirkland, Nancy and I spent an hour reminiscing about the first few years of our marriage in Kirkland. We enjoyed that walk down memory lane immensely.

When Nancy regains her energy, I’ll see if she’d be willing to share a message on the blog. So check back!

Update for the Inpatient Hospice Facility

Jake here again with another update.

While Nancy’s general pain and nausea have been pretty well controlled, she has continued feeling significant discomfort in her mid-section. Some level of this is expected due to the  cancer in her liver. Nancy expressed to her hospice nurse yesterday during the home visit the level of discomfort she’s been feeling lately. The hospice team acted quickly to admit her to their inpatient facility late yesterday. The care team here is applying a more aggressive use of meds to get Nancy some relief. It will take a little time to get there, and we’re expecting her to spend at least another night here.

Nancy had a restful night, and she continues to sleep through the day…it seems a common side-effect of all the medications she’s on is drowsiness. And that’s fine, because she’s been most comfortable lately when she’s sleeping.

The hospice team and the team at Nancy’s cancer care clinic continue to interact occasionally. Nancy’s hospice nurse shared with us yesterday a recent exchange she had with a team member at the clinic. During a discussion about Nancy’s care, the clinic nurse expressed to our hospice nurse the importance of Nancy’s comfort to the entire team at the cancer care clinic. We were both touched by the level concern the cancer care team continues to have for Nancy. Our friend Wendy and I always joked with Nancy that she was like the mayor of the cancer care clinic. Now I joke with Nancy that our goal is for her to become the mayor of hospice!

Thanks for your continued thoughts, prayers, and cards. I brought yesterday’s mail with me this morning, and Nancy will enjoy the latest batch of cards when she wakes up. 

A Week into Hospice Care

Original Artwork Card from Uncle Jack

Friends and Family,
Jake here again with another post.

Nancy has transitioned into the care of the hospice team. We met with the intake nurse last Sunday, and we spent 2 hours going over the hospice services, reviewing instructions, transitioning Nancy’s medications, and ordering equipment. On Tuesday, we met for the first time with our assigned social worker and nurse together. We’re quite happy with them in particular, and we’re impressed with the overall service level of hospice. The nurse and the social worker will visit us on a routine basis (once per week or two weeks) to check in on us. In the interim, we can call the hospice triage line any time. 

My experience calling the triage line so far has been outstanding. During business hours, I’ve been talking to a nurse within 30 seconds. After hours, a nurse has been on the line within 3 minutes! The 3 or 4 calls I’ve made during the first week have all been related to breakthrough pain, and the instructions have been effective. Nancy needs to be in bed the vast majority of the time, much of which is spent sleeping. When she sits or stands too long, she experiences a great deal of pain. 

Nancy's spirits are good, and Operation Cards for Nancy certainly helps! She reads each card she receives and is touched by every one of them. At this point, she’s not able to respond to the thoughtful notes, but she wants each of you to know how thankful she is for your kind words of encouragement. Nancy feels an abundance of love from all of you! We think of you as the most important part of Nancy’s care team.

I’m deeply grateful to be able to take leave from work, and this enables me to care for Nancy full-time. My job mostly involves checking on her frequently, administering her medications, making sure she has whatever food/drink she needs, and, most importantly, just being there with her. With the help of the wheelchair that was delivered last week, we’ve been able to have a few brief outings. 

Thank you for your continued kind thoughts, prayers, and notes of encouragement. We’re incredibly blessed to have such an amazing group of family and friends.

P.S. My first draft of this post included a note about how good Nancy has gotten at loading/unloading the wheelchair from the car. Of course I was kidding, but it didn’t make the final edit.

Operation Cards for Nancy

Awesome Aunt Indeed!

From Niece Sadie