Nancy's 47th Birthday Remembered

To commemorate Nancy's birthday on July 24th, Nancy's mom (Sally) and I went on a weekend trip to visit dear friends of Sally's from her medical school days. We took our sick little bulldog, Jojo, to Annie's and Stu's farm on the Palouse in Moscow, ID. It was a trip Nancy and I had talked about for years, but we never got around to taking it. Nancy would have LOVED it!

Stu and Annie were wonderful hosts. Stu informed us that they have a tradition of planting a tree in the memory of loved ones who have passed away. They had acquired an apricot tree to memorialize Nancy, and we planted it together on the morning of her birthday. Sally and I were deeply touched.

Sally and I were pleased that Jojo was well enough to make the trip. She has been battling advanced cancers (multiple myeloma and bladder cancer), and she began to deteriorate while Nancy was in the hospital. During the trip, Jojo had a wonderful time making new friends and spending a few days on the farm. On the drive there and back, we stopped in Vantage, WA on the shores of the Columbia River to have a picnic lunch. That is where Nancy and I picked her up from the breeder nearly 8 years ago. Full circle.

Since our return on Sunday, Jojo's condition deteriorated quickly. She was clearly telling us last evening that she was ready to join Nancy, so I took her to the vet. Jojo died peacefully as both the veterinarian and I cried.

Sally, Jojo, and I beside Nancy's apricot tree

Palouse Wheat - Nancy would have LOVED the beauty

Nancy's Tree

Nancy and I always considered our home to be our sanctuary and our favorite place in the entire world. When I suggested to her that I'd like to include her ashes in the planting of a new special tree in the front yard, she loved the idea. Our landscaper helped me select the perfect tree, a Bijou Japanese Maple. This tree's bark turns bright yellow during winter.

I placed the tree where I'll be able to see it from bed, from the patio, and from the living room. The landscaper added an up-light so I can take in its beauty and remember Nancy any time of day.

Nancy's Memorial Service - Links

The rest of Nancy's family and I were deeply touched by the turnout to her memorial service last week. I've linked a few items from the service for those of you who are interested:

• Memorial Service Bulletin
• For Nancy Video
• Solo Performance of "Gratitude"

Remembering Nancy

Nancy's obituary ran in Sunday's Seattle Times. You can find the remembrance with an online guest book via this link.

Additionally, the Seattle Mariners posted this touching entry on their blog.

Memorial Donations for Nancy

Nancy and I had discussed her desires for those who wanted to make a donation in her memory. The 4 organizations listed below all had special meaning to her. This document, Donation Info - In Memory of Nancy Haunty, provides instructions for making a donation in Nancy’s memory to each organization.

• The True Family Women’s Cancer Center / Swedish Cancer Institute / Swedish Medical Center Foundation - For the past 13 years, the Swedish Cancer Institute was more than an institution where Nancy received comprehensive and expert care. The staff and physicians were more like a medical family where she felt loved and in whom she felt a genuine trust.

• Team Survivor Northwest - Prior to her introduction to Team Survivor Northwest (TSNW), Nancy did not consider herself to be athletic, and she was intimidated by the thought of a fitness routine or athletic goal. TSNW initially supplied her with support, structure, and encouragement; and it ultimately helped her develop confidence and meaningful relationships with other women cancer survivors. We’ll always be inspired by Nancy’s determination to achieve her goals, whether they are running multiple 1/2 marathons or summiting Mount Adams.

• Harborview Mission of Caring Fund - Nancy personified kindness, grace, and charity. She felt a foundational connection with Harborview Medical Center’s core values and an incredible sense of pride in working for UW Medicine in support of that compassionate mission.

• Street Youth Ministries - Her compassion and desire to put her faith to action led Nancy to volunteer for SYM prior to her initial breast cancer diagnosis. In SYM, Nancy was struck by unconditional love shown to these kids while ministering to their immediate and long-term needs.

Thank you for considering a donation in Nancy’s memory to one of these or another charitable organization of your desire. And I’d like to thank Nancy’s friend, Pam Davies, for pulling this all together.

Nancy's Memorial Service

The memorial service celebrating Nancy's life will be held at 1:00pm on Thursday, June 2, 2016 at University Presbyterian Church in Seattle. The church is located at 4540 15th Ave NE, Seattle, WA 98105.

If you will be traveling from out of town to attend, please contact Luanne Skow (luanne.skow@yahoo.com) at your earliest convenience.

Nancy is Finally Resting

This is so difficult for me to write. Not just because each word is soaked in sadness. It’s hard because I realize that these words will result in a profound grief across a community of wonderful people who shared a deep admiration for a truly beautiful soul.

Nancy passed away last evening. Nancy was comfortable up to her final breath, and after that breath she left us with a smile that was indescribably beautiful. With it, she was giving me assurance that she had reached the peace that, as she had quoted a week before, transcends all understanding.

We will have an opportunity to celebrate, as a community, Nancy’s beautiful soul. In the coming days, we’ll be scheduling and organizing a celebration service. I will post details about the logistics here on the blog as they emerge. I’m anticipating it to be 10 - 14 days out.

If you are moved express your feelings in the form of flowers or some other gift of sentiment, Nancy preferred that you consider a donation in her memory to one of a few organizations that had great meaning to her. I’ll add a post to the blog with information about those organizations.

As one might imagine, I’m overwhelmed with a variety of feelings and emotions. But right now my predominant feeling is a deep sense of gratitude. I sincerely thank you all for your continual prayers, encouragement, thoughts, and love. You all made certain that Nancy knew how adored and admired she was.

Thank you.

Sleeping By Nancy's Side

This is my fourth attempt to write a blog update today. Nancy is comfortable and sleeping. She has crossed a threshold and moved into her final stages where she is unable to talk or move. I slept on a cot beside her last night, stroking her hand and reminding her how intensely loved she is. At one point, I told her I was picturing the faces of all those who share a profound love for her. My heart was warmed as I reflected on this. 

Dr. Rinn just came by the room to check on Nancy. The doctor-patient relationship they’ve shared for nearly 14 years is filled with an amazing love. After she finished her visit, she walked over to my side of the bed for a tear-filled embrace.

Now that I’ve written the post, I’m going to set up the cot as an extension of Nancy’s hospital bed; I’m going to crawl into our bed; and I’m going to cherish every moment of it.

Resting Comfortably

Nancy remains in the hospital, and she is comfortable. She’s been comfortable throughout her time here. Her doctors and the hospital staff have continuously made adjustments to maintain her comfort. Nancy is in the oncology unit, and the nurses almost exclusively care for cancer patients who are undergoing treatment. Nancy has less complex needs than the other patients here, but that does not diminish at all the level of attention and care they are providing. She is not awake very much, but I think her interactions with care staff has won them over. They see her sweetness and selflessness, and I see them care for her with great love.

With each day, Nancy rests more and more. We don’t have as many chances to talk, but she consistently hears how much she is cherished by me and by our friends and family. She knows it, but I like to remind her and she seems touched by it every time. We are expecting Nancy to stay in the hospital for the duration, and I know for certain that she is most comfortable with that plan. We’ve always considered our home to be our sanctuary and the place we love most in the world. But when we came back to the hospital last week, I noticed the sense of relief she had knowing that her oncologist, Dr. Rinn, was right around the corner and the care team was always present. That relief allowed her to be more comfortable, and it has allowed us to spend some precious time together. I’m spending the nights back at home, but I’ve been leaving her phone on the table beside her in case she needs to talk. I didn’t expect her to be able to call me, so it was an incredible surprise to get her call at ~4am Sunday morning. She was hoping I could come in to give her some reassurance from the confusion and dreams she was having. Of course I jumped at the opportunity. I think she is beyond the ability to call me now, but I plan on leaving her phone anyhow.

During one of her infrequent periods of attentiveness over the weekend, Nancy started talking about the love she felt from our community of friends and family. She talked about being lifted up and carried by that love. I truly believe that feeling remains with her during her dreams.

Inspiring Glitter

It’s Jake again with another update. Nancy spent her second night in the hospital last night, and it was a restful one. I’m afraid that I over-scheduled yesterday with 2 pastoral care visits with ministers from our church, University Presbyterian…actually one of them has moved on to a new church, but we have a history with him. Both visits were incredibly comforting to both Nancy and me. I was amazed at her lucidity while debating her favorite apostle, New Testament letter, and verse. You see, with the pain meds, she drifts in and out of her dreams and frequently brings the dreams with her when she wakes up. Seeing her so engaged and passionate while meeting with the pastors gave me an incredible sense of peace. In spite of the meds, Nancy remains aware of the situation. She acknowledged to the pastors some level of fear of what comes next, but she expressed a greater level comfort in her journey to come where a peace that transcends all understanding awaits her. Nancy also discussed how the deep and vast love she feels from the multitude of friends and family gives her a confident comfort. And this comfort serves as her companion on the path through the fear. She is concerned about the feelings of loss, loneliness, and deep sadness all of us will feel. Nancy’s selflessness, one of her core characteristics, easily cuts through her pain medications and hallucinations.

Because of Nancy’s exhaustion, her dear friend Wendy and I are taking shifts today sitting beside her while she sleeps. During Nancy’s 6-1/2 years of chemotherapy treatment, Wendy has re-arranged her busy schedule to make sure she can join Nancy for her appointments and her infusion treatments. Most staff in the clinic and treatment center think they’re sisters…and they practically are.

Everyone suggests to me that I sleep at home and that I make sure I’m rested and functioning, so I’m heeding the advice. The highlight of the past 2 days for me was the opportunity to get to the hospital early and eat breakfast with Nancy. She’s been awake and alert both days, and we have a chance to talk and spend time together. Yesterday, I decided to read to her the latest batch of cards. I read her one card from an online friend from the www.breastcancer.org patient support group. The friend, from California, talked about how much she has always appreciated Nancy’s willingness to honestly and constructively share with those women in earlier chapters of their cancer journeys her experiences with various treatments, drug side effects, payor questions (Nancy’s profession helped her!) in an incredibly supportive way. After reading the touching note, I handed it to her and told her, “Nancy, do you know that you inspire a LOT of people?” As she examined the beautiful and sparkly card, she responded with, “I inspire a lot of glitter.”

It was pretty adorable…and true! Nancy continues to inspire us in all aspects, and she has inspired an outpouring of glitter.

The Inspiration for Inspiring Glitter

In the Hospital Again

Jake here with another update. Since the last post, I’ve drafted 2 separate updates. I haven’t published them because Nancy’s status has changed. After returning home last Thursday, Nancy was initially comfortable. Her only complaint was the pressure or tightness in her abdomen, but the continuous IV pain medications seemed to manage that fairly well. Over the weekend she was pushing the button for additional medication fairly frequently, so a hospice nurse came out to increase the continuous dose. She continued needing more meds to feel comfortable through Tuesday morning, and we increased the continuous dose once again. Nancy had a pretty rough night last night…she was up every couple of hours and continued to be uncomfortable. The hospice nurse came by this morning to increase the dose yet again. Ultimately, Nancy’s doctor felt another stay in the hospital would be helpful getting her comfortable, and we fully agreed.

We’re here in the oncology unit of the hospital now (Nancy is in an inpatient hospice status). The pain medication makes Nancy extremely drowsy, and she’s been sleeping deeply most of the day. Nancy feels an additional sense of relief knowing that her nurses are constantly checking on her throughout the day and night…and especially knowing that her doctor will check in daily and is always a phone call away.

In the meantime, I’d like to re-iterate how appreciative we both are for the incredible support and love we feel. It takes many different forms: your cards and flowers, your kind words and hugs, your thoughts, and your prayers. Nancy’s doctor just visited us in the hospital room, and I joked with Nancy that the entire nursing unit couldn’t hold all the people who love and care deeply for her. Her doctor corrected me and told Nancy that the entire hospital couldn't fit the throngs of people who love her. Yet again, I think Nancy’s doctor is right.

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

An Overdue Update on Nancy

Friends, it's Jake here.

It has been a while since we’ve posted an update to the blog. Since November, we’ve had a few incredible trips (Sun Valley and San Miguel de Allende, Mexico) and a few wonderful visits from family and out-of-town friends. Most importantly, we’ve continued to feel the love and support of all of you.

We’ve also cycled through a few additional treatments with limited effectiveness. The past month has been especially difficult. Nancy has battled through significant pain and nausea with the courage and determination we’ve all witnessed through the past 6 and 1/2 years. We’ve known the list of available treatments wasn’t a very long one, and I’m saddened to report that we’ve worked our way through the entire list. This week, we’ve crossed a new threshold and are no longer treating her cancer. Nancy will be transitioning into hospice care next week in our home. We will be meeting with the hospice care team this weekend, and we’ll learn more about all of the resources that will be available to ensure Nancy will be as comfortable as possible.

Needless to say, it is a difficult time for us. But Nancy maintains the loving, kind, gentle, selfless, and genuine spirit we all know. I know she would love to hear your words of love and encouragement, so please send her a card.

I’ll ensure we keep this blog updated so you can keep better tabs on our girl.

We love you all more than we can express, and we feel the deepest sense of gratitude for your friendship.

Our home address is:
18284 Springdale Ct NW
Shoreline, WA 98177

Thank you for all of your continued love and support.
Jake

San Miguel de Allende in Feb

Chemo update

Hi again family and friends,
Just a quick note to let everyone know I've started weekly adriamycin.  We were hoping for insurance approval of Doxil, which is very similar, but in the end they just didn't approve it because adriamycin is cheaper.  Anyway, I've had three weekly doses so far and it is going okay.  I'm hoping we'll see my tumor markers come down.  We might still fight for Doxil since the side effects are lower (less chance of causing heart failure for starters), but also Doxil is given every three weeks versus weekly, which would be a huge benefit as you can imagine.  Anyway, I'll post more soon, just wanted to let everyone know the new chemo is started and so far, going okay.

Update

Dear friends and family,
It has been a while since I've posted an update.  My latest scan showed progression in my liver, so I'll be starting a chemo called Doxil as soon as we get insurance approval.  I've got mixed feelings, on one hand I am worn out from many months of taxotere/cytoxin, so I was ready to stop it from a quality of life perspective.  On the other hand, I'm getting low on treatment options and it is discouraging that my cancer is now resistant to yet another drug.  Dr. Rinn says I've got two mainline chemos left, Doxil and Ixempra.  Aside from those drugs, there might be possible experimental therapies via clinical trial.  She wants me to have a 2nd opinion at the Seattle Cancer Care Alliance to see if they might have some in-house trials and also to get a fresh set of medical eyes on my case.

Doxil is similar to a drug I had years ago called adriamycin, but the side effects should be a little easier.  While my liver is worse, thankfully my brain looks stable, the latest scan showed improvement on all 11 lesions treated with gamma knife back in May.

In non-cancer news, we went on an absolutely amazing trip in August with our dear friends, Jason and Wendy, to Italy, Greece and Turkey.  I felt really great on the trip, I had an extra week off from chemo, which helped a lot as we walked a ton.  Here we are on a beach on some Greek Island.  :-)

Team Fancy Nancy - We did it!

Thank you to everyone for supporting Kate, Molly, and I as we ran the See Jane Run half marathon on July 12th.  It was incredibly touching to have Kate and Molly literally by my side for 13.1 miles and to cross the finish line with them, arms linked.  There is no way I could have done it without Kate and Molly, I am blessed beyond words to have such amazing sisters-in-law.  I love them both so much.  This was absolutely the highlight of my summer!!!

Thank you to everyone who supported our fund raising efforts, we raised $6,000 for Team Survivor Northwest!

At mile 8 on the University Bridge

Crossing the finish line!

Team Fancy Nancy

Dear family and friends, thanks again for checking in and continuing to follow the ups and downs.  From the last post, you might recall I was able to squeak onto a clinical trial for a newly approved oral medication.  Dr. Rinn was willing to give it a shot, even though it was a long shot, because I needed a break from chemo and the clinical trial was my only hope for ever getting to try this drug.  I was on the drug for about 2 months, but unfortunately my tumor markers continued to rise, so we knew it wasn't effective.  I had a scan and sure enough, additional tumors in my liver showed up along with some existing ones that had gotten larger.  Oh well, it was worth a shot, but now I'm back on the nasty chemo I was taking before (combo of Taxotere/Cytoxin).

In other news, you might recall they were keeping an eye on some spots in my brain, which all got larger, plus a few more popped up.  Yesterday, I had gamma knife (radiation) on a grand total of 11 lesions.  The procedure went fine and I feel remarkably well.

Backing up a bit, you might remember from my last post that I've started running again.  The break from chemo was exactly what I needed to get rolling on my goal of completing a half marathon.  Lucky for me, I've got lots of cheerleaders and support!!  My friend, Jennifer, plans to run with me in the Rock and Roll half marathon in about a month.  If that isn't enough, my two amazing sisters-in-law, Molly and Kate, have formed "Team Fancy Nancy" and for the See Jane Run half marathon in mid-July.  We've decided to do some fund raising for Team Survivor to celebrate the event.  You can make a donation and follow our progress at the Team Fancy Nancy website.  THANK YOU!!

SEE TEAM FANCY NANCY RUN!!

The latest

Dear family and friends, thanks as always for checking in.  Things are going pretty well, sorry it has been a while since I've posted an update.  Since my last post, I had several months of taxotere/cytoxin, which is a rough chemo combo and I was ready for a break.  Luckily, a new oral medication was recently FDA approved and I was able to squeak onto a clinical trial.  Side effects are mild and I'm relieved to have a little time off IV chemotherapy.  The new drug is called Palbociclib, which is given in combo with letrozole, a drug I've had in the past and to which my cancer is resistant.  Frankly, it is a long shot, but worth trying since I really needed a break.

As for my brain mets, my most recent cyberknife procedure worked well on the area they treated, however my latest scan in late January showed 5 new lesions.  The plan for now is watchful waiting, my next follow up scan is April 3rd.

In happier news, we had a great weekend with Jake's Uncle Jack and Aunt Lynne in Tucson a couple weekends ago. It was fun to spend time with them and take in the beauty of Tucson, plus the rodeo was in town, which was really fun.  I've also started doing some volunteer work, helping families at a transitional housing facility and I've started running again with the hope of finishing a half marathon this summer depending on how treatment is going.

Chemo update and brain radiation to boot

Hi again.  No sooner had I posted my last update, saying how my new chemo was going smoothly, when the side effects hit me like a ton of bricks.  I had awful aches/pains for about 5 days, then felt well the next two weeks, so that's the upside.  Chemo again today, in fact I'm posting this update from the treatment center.

Last week I was scheduled for a follow up brain scan, which showed that one of brain tumors was a bit bigger.  They set me up for another cyberknife, which I had on Tues this week.  It went smoothly, I'm a little tired, but otherwise have no side effects (totally amazing technology).  They will repeat the brain MRI in 8 weeks to make sure that spot is shrinking and/or gone.

In non-cancer news, we had a very nice Thanksgiving with Jason/Wendy, my mom, mother-in-law, and brother.  Jason and Wendy hosted in their beautiful new home and they cooked an absolutely amazing dinner.  It was really fun and we were so thankful to be with family and friends.

New chemo started

Hi again friends and family,
My tumor markers were rising the past month or so and a scan showed that I've got progression in my liver, so we're on to another chemo.  The cocktail of choice is Taxotere and Cytoxan.  Taxotere has a reputation for being "taxoterrible", but so far it hasn't been too rough.  Thanks for continuing to check in, hope everyone has a wonderful Thanksgiving!

Quick update

Hey friends and family, thanks again for continuing to check in on us and send notes of encouragement.  Jake and I appreciate it so much.  Hard to believe, but I've been dealing with metastatic disease for about 5 years now and, thankfully, continue to beat the odds.  That's a long time and we truly appreciate that you are still checking in on us.

I am doing okay, though this current chemo is not my favorite, which is a polite way of saying I hate it.   The tummy issues are miserable, though at a reduced dose I'm figuring out how to take enough drugs to counter the side effects.  Compared to late July when I literally couldn't get out of bed and had terrible pain, I'm significantly better.  Why can't I get a chemo that has side effects of glowing skin, lustrous hair, improved energy, and weight loss?  Is that too much to ask? :-)

I had my normal weekly treatment today and had monthly tumor marker (CA 27.29) lab tests.  Initially my markers went down by one point on this chemo, but they jumped up 20 points last month.  Dr. Rinn said (and I totally agreed) that it was too early to abandon this chemo because I haven't had very much of it.  I suspect this month's tumor markers will be important.  If they go up significantly, I'll get a scan and likely need to change treatments.  If they are stable or reduced, we'll stick with the current chemo, though Dr Rinn said we aren't wedded to this treatment, so if it is too miserable, she'll find something different for me.  I'll update the blog once I get results.

Thanks again for checking in on me and keeping up with the minutia of my many health updates and ramblings over the years.  We've all got something...I'm humbled and honored that you keep checking in.
Will let you know what I find in the next few days.

Chemo update

Hey everyone, thanks again for continuing to check in.  My latest chemo has been rough with terrible side effects, mostly tummy issues, but I've also had a lot of trouble with headaches.  I had to miss a treatment and my dose has been reduced to 60%, this is by far the hardest chemo I've ever had.  Side effects aside, the good news is it seems to be working as my tumor marker fell a couple points last week.  Hopefully we can figure out the right mix of dose/schedule and meds to counter the side effects and I'll get some mileage out of this drug.

I realized I didn't give an update on my last brain scan, which is basically fine, though one of the previously radiated lesions was a little bigger (could be scar tissue).  Since I have been having so much trouble with headaches, they decided to give me another scan yesterday and it looked stable, so that's good news.

New chemo starts today

Dear family and friends,

I finished my half marathon on Sunday and it was great!  Here's me with Coach Kit from Team Survivor near the finish line.

The race was just in time as I'm starting a new chemo today that probably won't be too compatible with running.  The new drug is called irinotecan (patients pronounce it "I-run-to-the-can", hahaha)...hopefully the side effects won't be too bad, but potentially this is a rough one.  As long as it is worse on the cancer than it is on me, we'll take it.

Next week I have a follow up brain scan, so I'll report back on that front.  Fingers crossed it will be okay. 

Updates

Dear family and friends,
I had a scan a few weeks ago and the results were mixed, some of the tumors were shrinking, but others were larger and there was a new one as well.  Dr. Rinn, as always, had a few tricks up her sleeve and a plan.  She suggested getting tissue samples from the new tumor and one of the shrinking tumors to see if there was a pathological difference between the two that might be clinically relevant. Last Friday I had a liver biopsy and got the preliminary results this week and it turns out there IS a difference.  The new tumor is HER2 positive, which means I'm eligible for additional treatments like Herceptin.

In addition to the standard pathology tests, she also ordered genomic tests on the tissue.  It will take a couple weeks to get results, but potentially, the results might indicate whether I would be a candidate for certain experimental drugs available in clinical trails or through the compassionate use clause in the FDA.  More info to come, but that's the update for now.

In other news, Kate posted about my half-marathon training, which is coming along, though last week's liver biopsy slowed me down.  I'm scheduled to run 13 miles tomorrow and the race is July 13th.

Inspiring

Per usual, Thursday was a chemo day. Nancy headed downtown after lunch and was probably joined by Wendy who just sat with her. The exception to this particular Thursday, however, was that prior to getting chemo, Nancy had just finished her 10 mile training run.

Every now and then we hear one of those stories that moves and effects us in some deep, meaningful way. And every now and then, we get the privilege to be a part of that story or run alongside the main character. And we feel inspired. This story is about overcoming circumstances and doing something big. And it's about Nancy. A month from today, despite the need to start a new attack on her cancer which is constantly on the move, Nancy is running in the See Jane Run half marathon. Now the 5k would be a pretty big deal… but no, Nancy is running the 13.1 miles!!

If you're a runner, you understand that it's not just about the race. It's about the daily focus… pressing yourself and persevering the uncomfortable. Logging a lot of miles before the race. When the weather is bad, we still lace up our shoes. When we're tired or sore, we still head out the door, --because that finish line is in sight. But what all of us can only imagine, is what it's like to have the added burden of running each training mile, and running that race, with 4th stage cancer.

Although I can't physically be in Seattle to run alongside Nancy on July 13th, my heart is there with her. Thank you for inspiring me, Nancy.

-Kate

Amazing day - vow renewal

Dear family and friends,
My sis-in-law, Molly, submitted our story to a cancer charity that grants "wishes" and we were selected to have our dream of a vow renewal ceremony.  We were limited to 50 people, so it was a small gathering, but wildly exceeded our expectations!!

A sample of photos can be viewed at this link.

The video of the big day can be viewed here.

There was even a local news station that did a story on the event, seen here.

Overdue update

Dear Family and Friends,
Sorry it has been so long since I've posted anything, all is well.

I had a follow up brain scan today and, thankfully, it was clear.  We expected it to be fine as I haven't had any symptoms, but still it was comforting to get those results.  Chemo continues to go very well, seems like we've hit the jackpot with this one.  My tumor markers are nearly back to normal and the side effects are very doable, at times I almost forget I'm on chemo.

In other news, I am officially retiring from work.  I'm taking a medical retirement, something I probably should have done long ago, but I have been so fortunate to have a job that I truly love, it has been difficult to let go.  I will miss the people so much...UW Medicine has been incredibly gracious to both Jake and I with our need to take time off work.  One of the most extraordinary things is that my coworkers donated sick leave to me, which is humbling beyond words.  Jake and I went to a work-related dinner the other night (he was celebrating his 10-year anniversary with UW Medicine and I was celebrating my 5 year) and it struck us both about how lucky we are that our employer feels like family.

Lots of people have asked what I'll do now that I'm retired.  Mostly, I'm focused on my health (chemo and all that goes along with it is a lot of work), but hopefully I'll continue to feel well enough to pursue some additional interests like volunteering.  I'd like to do a little gardening this summer and, of course, the bulldogs are always game for attention.  Mostly I just want to spend quality time with Jake, friends and family.  I feel very lucky to be feeling so well after 2013 was such a bumpy year.

Final bit of good news.  My sis-in-law, Molly, submitted our story to a foundation that grants "wishes" to cancer patients and we were fortunate enough to be selected.  The organization is granting us a vow renewal ceremony, something Jake and I always dreamed about doing.  It will be a small gathering, but we are beyond excited about it.

Tumor markers falling

Dear family and friends, hope you all had a wonderful Thanksgiving.  We are celebrating with great news as my latest tumor markers are down 50 points versus a month ago.  Looks like Halaven is working!

Clear brain scan, new chemo underway

Good news, my brain scan yesterday was clear.

I started my new chemo, Halaven, today and so far, so good.  Fingers crossed it will be effective.  Halaven is a fairly new drug (FDA approved 3 years ago), so there isn't a ton of data on it.  We're a little jaded because Afinitor, the last drug I was on, was touted as a big breakthrough in metastatic breast cancer, but didn't do much to slow my cancer.  Halaven doesn't have quite the hype that Afinitor has, but hopefully will work.  It seems like I tend to get more mileage out of the chemotherapies versus the hormone therapies, so hopefully that will be the case.

Scan results - time to switch treatments again

Dear family and friends, Nancy here again.  I always feel a little funny writing posts on a blog about myself, but here goes...

My latest scan results are in and the cancer in my liver and bones is worse, so I'll be starting a new chemo this week.  The new chemo is called Halaven (aka eribulin) and word on the internet is it is not too awful in terms of side effects.  I have a brain scan this week to make sure the cyberknife was successful.  My memory is terrible, worse than usual, which is saying something for those that know me (!) and I'm having some pressure in my head, but no headaches, thank goodness.

THANK YOU for keeping up with all the ups and downs, everyone.   I'll post more when I get the results later this week.

The latest

Dear family and friends, Nancy here again, thanks for continuing to check in.  As Jake posted on the last update, I finished cyberknife and am glad to have it in the rearview mirror.  I'll have a follow up brain scan in about 5 weeks to make sure all is well.  I also meet with Dr. Rinn this Friday to talk about my systemic therapy of Aromasin/Afinitor.  I'm sorta' anxious to have a scan to know if it is working, but will defer to her expert judgement.  I feel okay, mostly just tired.  I've had a little trouble with mouth sores, but they are getting better.  I've had a few mild headaches too, but nothing like the terrible headaches of the past few months.

We had a nice visit with my Aunt Nancy and Uncle Rich this past weekend (I completely forgot to take pictures), but it was great to see them.  My mom, who also has stage 4 breast cancer, goes for surgery on her ankle next week, so I'll be taking care of her for a change.  Fingers and toes crossed the surgery will go smoothly and she'll literally be back on her feet soon.

CONGRATULATIONS GRADUATE!

Last week was a big week.

Nancy received 5 straight days of radiosurgery (cyberknife) treatment on the area of her brain where she had surgery this summer. As her radiation oncologist explained to us, the reason for the 5 separate procedures of lower radiation instead of a single treatment is like going to Hawaii. When you visit Maui from Seattle in January, you need to adjust to the sun. Spending 8 hours in the sun on your first day will result in a sunburn (this is a concept I have yet to remember when visiting Hawaii in January). However, if you spend an hour in the sun each day, there's a healing cycle in between each exposure. And no burn!

The area being treated was pretty close to the optic nerve, and if treated in a single dose of radiation there's a 10% chance that the optic nerve would be damaged. But with the 5 smaller doses and an opportunity to heal in between, the risk is reduced to less than 1% chance. So a week's worth it was. 

The treatments were fairly quick (20 minutes). She had her choice of musical genres and some quality time in the treatment room alone with the robotic arm and a mask bolting her to the table. Nancy found these treatments among the more anxiety-producing events of her battle to date. At certain points during each treatment, she experienced very unpleasant tastes and odors. And I suppose any experience where everyone else leaves you alone in a room behind a 14-inch metal door can be unnerving.

On the positive side, dear friends Luanne and Jenny each took a shift being with her during treatment and driving her. So it wasn't all bad.

 After the final treatment on Friday, Nancy was presented her diploma!

  by Jake

Cyberknife - day 2 of 5 complete

Hello again friends and family, thanks for continuing to check in on my never ending medical updates.  Today was day 2 of 5 days of cyberknife radiosurgery to mop up any microscopic cancer cells that might be left behind after my surgery in July.  It went well (big thanks to Luanne for being with me today and driving me home, prospective thanks to Jenny who will be with me tomorrow).

Cyberknife is a walk in the park compared to some of the medical torture I go through, but to be honest, it freaks me out.  I try to be brave, but once they snap the mask onto the table and close the enormous lead door, I get a mild panic attack and have to psych myself to be calm until it is over.  Today, mid way through the treatment, the computer stopped working and they had to reboot it or something.  The cyberknife robot arm was pointed straight at my right eye when the breakdown occurred, so I had to lie there while the robot eye opened and closed multiple times.  All I could think about was the possibility that they were accidentally nuking my head while the computer came back on line.  The staff were as nice as could be, giving me updates through the intercom, but still it was me versus the high beam radiation robot stare-down (wish I had better writing skills because I'm certain there is a funny story here).  Anyway, I survived and am doing perfectly fine tonight.  Two down, three to go.  Ready for a victory lap this Friday when I'm finished.

Here's a pic of the door (see how thick it is?!).

Cyberknife scheduled

Hi again, Nancy here with another update.  My cyberknife radiation treatment is all set for next week.  This time it will be Mon - Fri, about an hour each day.   In non-brain-related news, I saw Dr. Rinn and we talked about my rising tumor markers.  She wants to stay the course with Afinitor/Aromasin for now because she doesn't think I've been on it long enough to know if it is effective.  We'll check my labs again in a month and see how things look.  If they are still rising rapidly, we'll do a scan and potentially change to a different chemo.  So far, the A/A combo has been a very easy treatment and it is nice to have be taking oral meds rather than going into the infusion center every week.

I'm still very tired, probably from surgery, maybe also from treatment, but am taking it easy and trying to get lots of rest.  Thanks again for all the support and well wishes.  Jake and I had a lovely anniversary dinner last night, then played cards on the patio while we watched the sunset over the water and mountains...made me think that in spite of having an awful disease, we sure do have a wonderful life!!

Labor Day weekend

Hello again family and friends, thanks for continuing to check in and keep us in your thoughts and prayers.  We've had mostly smooth sailing the past couple weeks including a great visit with friends last weekend and a fun weekend in San Francisco over Labor Day.

While it has been mostly smooth, I had another awful headache last week following issues with my right ear and had to go into the hospital for iv fluids, pain meds and anti-nausea drugs.  My medical team wasn't happy with this turn of events, so ordered scans of my head/neck and a lumbar puncture to make sure the cancer hasn't spread to my spinal fluid.  Huge thanks to Jenny and Wendy for transportation and company on short notice during my spinal tap.  The scans and lumbar puncture results were all good, which is great, though we don't have an explanation for why I'm still having headaches.  I had another headache today, but I am starting to figure out the right combo of meds to take, so felt much better after 6 hours and my nausea was kept in check (big improvement over the last headache that lasted something like 28 hours)

We are still waiting for insurance to approve the cyberknife treatment, but expect that will come through any day now and we'll get the procedure scheduled.  My tumor markers have been climbing, but Dr. Rinn thinks we should stick with Afinitor/Aromasin for now.  I meet with her on Friday to talk about next steps.

Thanks again for all the cards and well wishes.  Sorry I'm not good about calling and am way behind on sending thank you notes.  Please know we appreciate it more than we can possibly express.

More updates

Hello again family and friends,
In spite of the bumps, we are still hanging in there.  Jake's back is a tiny bit better, though still really painful.  We are doing our best to take care of each other.

I had an informative appointment with the radiation oncologist yesterday to talk about post-surgery radiation options.  We talked about doing either cyberknife (targeted radiation) versus doing whole brain radiation and decided cyberknife makes the most sense.  I'll start it in about 10 days or so, after they get it cleared with insurance.  The treatment will run for 5 days straight, versus the single high dose treatment I had earlier this year, but otherwise will be similar, which is to say hopefully very easy, mostly I'll just be tired.  I hadn't contemplated whole brain radiation, but based on what he explained yesterday, it seems at some point we may cross that bridge and there's even an argument for doing it now to reduce the risk of other lesions popping up (my risk for this is quite a bit higher than I thought, something like 70%).

The scar from surgery is healing well and I haven't had any trouble with additional headaches.  My final dose of those awful steroids is today (thank God), so I'm hoping to feel back to my old self soon.  It has been smooth sailing on the combo of aromasin/affinitor, so hopefully I'll get a nice long run on it before needing further chemo.  Now that my black eye is healing up, I'll have to get some updated photos.

Couple bumps in the road, but we're still going strong

No sooner had I posted how well things were going that I got my first terrible post-op headache in the middle of the night on Wed.  It came on suddenly and was quite severe, so I tried to wake Jake up to see whether we should call the doctor or tough it out, but it was nearly impossible to wake him up (he had a procedure earlier in the day for his back and was literally down for the count, not allowed to drive for 24 hours, so it was crazy for me to attempt it). Since I couldn't wake him, I took my pain meds, wrapped the heating pad around my head, and went back to sleep.  The next morning, I was still hurting and, because I'd taken pain meds on an empty stomach at 2am, had terrible nausea and couldn't keep anything down, not even a small sip of water.  After talking with the neurosurgeon's office around 8am, we were told to go to the ER to make sure I didn't have bleeding in the brain or some other horrid problem.  Quick CT showed a little swelling, nothing too impressive, but enough to give me a big dose of steroids, pain pills and anti-nausea drugs.  I'll follow up tomorrow morning with another CT and visit with the surgeon, but am doing much better now.

On a happier note, I went into the office on Friday for a social visit with my wonderful coworkers/friends.  Everyone kept commenting on how much color I had in my face and neck...wondering if I'd actually been on vacation in Hawaii versus out for brain surgery.  Turns out, it was those darn steroids!  I had a visit with Dr. Rinn right after and she noticed it right away, along with my puffy round face, which she assured me would go back to normal soon.  Amazing Dr. Rinn apologized for all the drama I've been through lately, but was incredibly reassuring (as she always is) that we will continue with the current plan of Aromasin and Affinitor.  She made me promise never to take percocet on an empty stomach again, even taking a couple crackers at 2am along with an anti-nausea med will be enough to ward off future trips to the ER.

As some of you know, Jake has been struggling with terrible back pain for four years now and while we are hopeful this latest procedure to cauterize the nerves in his back will help, he tweaked his back today and is in so much pain he literally can't move.  Since I'm on strict orders not to lift more than 10 pounds, you can imagine the comedy of me trying to "help" him get around.  We might as well be a couple old folks ready for the nursing home, but he toughed it out and is hopefully on the mend.

Thanks again for all the support and help...we really are doing well in spite of the ups and downs.  Here are a few of my favorite new photos, the bulldogs on top of Jonathan Adler ottomans (birthday present from my marathon of birthday celebrations), a photo of us pre-op on vacation in Santa Monica with my snazzy new wigh and enjoying birthday cake with friends.  Love to all, thanks again for supporting us!!