Conclusion

Much of what I’ve written over the last six-and-a-half months during Sami’s journey with glioblastoma has mostly served to help me process our experiences - writing, for me, is therapeutic. But I’ve come to learn that my blog posts have been helpful for others, as well - I have found the feedback and support from friends and strangers alike to be incredibly helpful. And so I write this blog post for both purposes - for myself and for our family and friends (virtual and real-life).

As it has throughout this process, time has behaved oddly over the 18 days since I posted Where We Are on this Map. While we were still discussing treatment options, Sami was leaning towards trying one round of a new chemotherapy drug (Lomustine) with the hope that it would slow (or even stop, for a time) the growth of the multiple lesions on her brain. On Sunday, July 30, my parents and my sister Meri drove from Sonora to join us for lunch. We had a great visit on the deck - it was a beautiful day, and a delicious lunch. After they left that afternoon, I headed to the grocery store to do our weekly shopping; Emma stayed with Sami.

I arrived home to find a fire truck in one driveway and an ambulance in the other. While I’d been shopping, Sami had suffered another seizure. We’re not entirely sure what happened, but she fell and hit her head - she eventually required seven staples to close the wound. And she got to take another ambulance ride - this time to Sutter Roseville.

After the first ER doctor examined her, and we explained more of Sami’s medical history, someone I perceived to be a more senior doctor came into the room. He told us based on Sami’s diagnosis, and on what had happened that evening, that we should probably consider hospice care - the second time a doctor in the Sutter Roseville ER had suggested it. Understandably, we were all upset, worried, and anxious - but unlike when it had been suggested 2 months earlier (before Sami’s stay at UCSF), we all (Sami, Emma, and me) felt like it was time. Sami said, “I just want to be done.” Later that evening, we asked the doctor to enter orders for Sutter Hospice, and we completed Sami’s first “Physician Orders for Life-Sustaining Treatment” (or POLST), indicating that Sami did not wish to have CPR or anything other than comfort care if we found ourselves calling for an ambulance again.

Looking back at that decision (which was just a mind-blowing two weeks ago), I feel like having some clarity about being done with treatment helped Sami’s frame of mind. On the morning of July 31, I called her UCSF nurse practitioner to let her know we would not be pursuing further treatment. The NP told me that she didn’t like the language around “fighting cancer,” especially when it applies to glioblastoma. “Sami’s not giving up ‘the fight,’” she told me, “nobody wins when it comes to this particular cancer.” Sami began to be willing to talk about what she wanted our daughters to know and to remember about her. We talked about her legacy, and about how she wanted us to celebrate her life. In many ways, I’m grateful for the conversations we had in the few days between entering hospice and the eventual intensification of her symptoms. They were terribly difficult, but terribly important.

Sami’s hospice care didn’t get off to a great start, unfortunately. Looking back, it felt like we had to convince yet another care team that we knew what Sami was facing, and that we had a good sense of how she was feeling and how quickly her condition was changing. With the help of a wonderful hospice nurse, we were finally able to get daily visits from Sami’s care team.

We celebrated our 33rd anniversary on August 4. Our friends Eric and Courtney, who operate Restaurant Josephine here in Auburn, treated us to a takeout dinner. Our dinner on the deck turned out to be the last time Sami was able to get out of bed. And that evening, I made the decision to ask our oldest daughter, Lara, to come home sooner than she had planned. Lara and her partner Micah arrived home the next evening.

After our anniversary, Sami’s decline accelerated. After Saturday evening, we could no longer get her out of bed. As the weekend progressed, she had difficulty talking, and told us her vision was becoming blurry. On August 9, our niece Hanna and her husband Wyatt drove to Auburn with their kids and fixed us lunch. Sami got to hold our 5-week-old great nephew Boone. It was an amazing day. By August 10, Sami slept for most of the day. The next day, she could no longer respond when we asked her questions.

But she could still hear us. Sami’s sister Suzi flew in from Pittsburg on August 10. My sister and brother-in-law joined us on August 11. We all sat in our bedroom off and on over the next day or so and shared memories and laughs. And Sami definitely knew we were there.

The evening of August 11 was rough. Sami was obviously progressing towards the end; we stayed with her a good part of the night. On the morning of August 12 (Emma’s 20th birthday) Sami had a few moments where the fog lifted. And during one of these phases, Sami reached out and hugged me. For the last time.

That evening, we decided we’d sit with Sami on shifts - I took the 12am-1am shift. At 11pm, my sister awakened me and said Sami was noticeably worse - she was having difficulty breathing and was calling out. We sat with her, talking to her, holding her hands, and stroking her brow. Finally, just before 1am, she began to relax. She passed just after the top of the hour. At 1:30, a hospice nurse pronounced her dead. We sat with each other well into the morning hours, reminiscing about Sami and our lives together - our version of a wake, I suppose. Sami wanted to donate her brain for the study of glioblastoma. I talked to UCSF, and the NP suggested donating her body. Two men arrived from San Francisco at 4:30am.

So much for chronology. One of the things that struck me early Sunday morning was the relationship between biological death and spiritual life. The process of dying from glioblastoma was agonizing to watch; I can’t imagine what it felt like to Sami. When it was over, I felt like I needed to be present for the practical work of caring for someone who’s died. I watched the UCSF representatives prepare her body, place it in the vehicle, and drive down Joeger. I cried when the taillights disappeared down the road. But I had to watch.

I’ve also realized that every family’s path is different - that it’s unfair to judge another family’s decisions. The NP told me that some patients want to continue seeking treatment until the very end, while others may feel that quality of life and time with family are the top priorities. For us, being at home at the end felt like the right thing to do. That said, there’s no way I could have cared for Sami at home without the help of my family, especially Emma and Lara. I found that I wanted to be fully present for everything that Sami went through. To do (with the girls and with family) the things that we needed to do in order for Sami to spend her final days at home. To watch her leave (physically and spiritually). But everyone’s path is different. There can be no right or wrong in navigating these journeys.

In many ways, I have been grieving since an ER doctor told Sami that a CT scan revealed “some sort of mass” on her brain on the evening of January 27. But I’ve also been holding that grief at bay so I could be a husband, a father, and a caregiver. This week, as the reality of Sami’s passing settles on me, I’m finding that little things bring great sadness - seeing her unused toothbrush next to mine, or opening the contacts on my phone and seeing her picture at the top of my favorites. I have a feeling that Sunday morning, when I wake up with everyone gone, will be rough.

This next bit may sound strange to some. In the early 2000’s, when my grandmother passed away, I saw a snowy egret on my way home from her house. I immediately thought of her - egrets are graceful and stately in a way that Grandmom was. Last Sunday, I went for a walk at home, and a red tail hawk circled over me for several minutes. I can’t explain it rationally, but I felt like Sami was checking in. Red tail hawks, to me, are beautiful, graceful, and fierce when they need to be - much like Sami. I know I’ll think of her every time I see a red tail hawk for the rest of my life.

Finally, I want to say a few words about community. Our actual community - the Sierra Foothills - has been amazing. Our freezer is full of food, our barn is full of feed, our woodshed is full of this winter’s firewood. My friends built fence for my sheep two weeks ago while I tended to Sami. We are incredibly blessed. But our virtual community is equally amazing. We’ve received gifts of food and drink from people I’ve never met in person. I’ve received the most amazing messages on Facebook, Twitter, and Instagram. All I can say is thank you. Even on the hardest of days, you hold us up. Thank you.

To that end, we are planning a Celebration of Life for Sami on December 23, 2023, when both Lara and Emma can be home. It will be at the Gold Country Fairgrounds, where Sami served as a board member. Stay tuned for details, but we hope you’ll join us on that day.

And Sami wanted to establish a scholarship for Placer High School Future Farmers of America students. In lieu of flowers, we would invite you to contribute! Checks can be made out to Placer High FFA Boosters, 275 Orange Street, Auburn, CA 95603 (Attn: Sami Macon Memorial Scholarship).