Finding a New Routine

In response to a friend’s beautiful social media tribute to Sami after the Gold Country Fair concluded earlier this month, I replied that I had a Sami-shaped hole in my heart. I’m also finding I have a Sami-shaped hole in my daily routine.

Before Sami got sick, we divided the animal chores. I would take care of the commercial sheep flock each morning; Sami would take care of the animals here at the house. The morning chores at the house usually took Sami about 20 minutes; my morning sheep chores often take longer, especially if they include pasture irrigation or checking lambing ewes.

Up until the third week in August, when I started back to work, I had help with chores from our daughters. One of them would generally take the morning chores at home, while I’d do my normal sheep work. But now that we’re all trying to get back to “normal” (whatever that is now), all of the chores are mine. I absolutely don’t mind doing them, but I have a greater appreciation for how Sami’s work allowed me to do my own.

My non-animal morning routine has also changed. I’m trying to go for a walk before work (or on weekend mornings) at least four days a week. During Sami’s illness, I became addicted to the LA Times crossword, which I do every morning with my coffee. I am trying to keep a journal, too - and morning seems to be when I’m motivated to write in it. With all of these things (plus breakfast) on top of my animal chores, I need to be getting up around 4:30am! I’m an early riser, but not that early!

I also find that I’m trying to be open to new routines - and to new ways to approach my old ones.I’ve struggled with whether to keep my sheep. I realized this weekend that I could let go of thinking of the sheep as a business - at my current scale of operation, they are an excuse for me to be outside every day, and a way to put meat in my freezer, as well as the freezers of my extended family. Most of you are probably saying “DUH” as you read this, but for me, it’s been a revelation. It means I can pay someone to irrigate occasionally during the summer months so I can travel - and not worry about the impact to my profit. It means the sheep would become my exercise program, my therapy, and my hobby.

But I’m also trying to be open to new ways of working with sheep more generally. Perhaps there are other ways for me to continue to pursue my passion for sheep-raising (and for the products sheep produce) without having a 7-day-a-week, 365-days-a-year obligation. We’ll see.

I’ve also relied on technology to help me settle into a new routine. I’m not a cat guy, and yet I have a cat (Simba, an obnoxious 10-year-old orange tabby). I have had to set reminders in my calendar to clean his litter box (he “reminds” me to feed him, mostly by jumping on the counter as I’m making coffee each morning). The reminders to clean out the end product of feeding him are annoying, but necessary (and helpful). As a side note, if anyone wishes to adopt a middle-aged cat….

I suppose all of this is part of coming to terms with - and moving forward with - my grief. I don’t miss Sami because I’m having to do her chores. I miss Sami because I know how much she enjoyed doing her animal chores (as I enjoy mine). I miss being able to ask her little questions about the sheep, or teasing her about the cat. I miss her practicality and her ability to help me understand the little (and sometimes, big) problems that arise when any of us care for animals. I miss her terribly, and yet I also think that establishing a new routine - caring for ALL of our animals - honors her love for our life and our animals. My routine (much like me) is a work in progress.

 

Little Reminders

Sami has been gone now for just over three weeks. During that time, I’ve helped our youngest daughter move back to Idaho, watched our oldest daughter fly home to New Mexico, and gone back to work myself. I’ve also started working on settling Sami’s affairs - wrapping up her veterinary business, closing accounts, and talking with financial planners and life insurance companies. And I’m adjusting to being alone at home for the first time in 34 years. 

I’m finding that if I keep busy, I don’t have time to dwell on my sadness - work, and the work of keeping a household (which for me includes pets, chickens, mules, sheep, a vegetable garden, and landscaping), seems to take most of my waking hours. I try to exercise regularly - Mae the wonder dog (the only border collie left at home) and I try to walk at least a couple of miles most mornings - but I haven’t had much real down time. In some ways, I think I’m afraid to stop.

For me, the grieving process began with Sami’s glioblastoma diagnosis last February. Our research confirmed that glioblastoma was not a curable cancer. We hoped that a combination of chemotherapy and radiation treatments would stop the spread of the cancer in her brain for a time, but we both knew that it would eventually spread. And so we were sad from the outset.

The intense effort that preceded Sami’s passing early on the morning of August 13 - a period that I now realize started at the end of May when she was hospitalized at UCSF following her first gran mal seizure - required us to keep our grief at arm’s length. Dealing with multiple doctors, insurance providers, and at the end, hospice caregivers, seemed to occupy all of my time and most of my mental capacity. Similarly, the rush of activity immediately following her passing left little time for grieving. But I sense that this is starting to change, at least for me.

Initially, little reminders about Sami’s absence brought tears - seeing her toothbrush next to mine, or realizing that I couldn’t text her with updates about our trip to Idaho made me incredibly sad. These last few weekends, the small accommodations we made in our home to help keep her safe and comfortable (like the grab bars in the shower) made me cry. Coming home from work to an empty house has been hard - I find that I took for granted how important our inane, “how was your day” conversations were in helping me decompress and relax.

As I reflect on our nearly seven month journey with cancer, I also regret the times I was overly protective of Sami - trying to keep her safe. I regret being angry with her on the afternoon last spring when I found her rearranging the hay in the barn, or the times I chastised her for getting out of bed without our assistance. She was such an independent person during our entire life together - I’m certain she hated being dependent on me.

But I’ve also found myself in conversation with Sami during these last three weeks. Sometimes I simply tell her how much I miss her; other times, I find myself telling her what I’ve accomplished - mostly little things like remembering to clean the litter box, or making my bed every morning (things that she always did). Sometimes I joke with her - I tell her I’m finally going to clean out her Tupperware cupboard, or get rid of the ratty old clothesline in the backyard. And I relish the times that I see the resident red-tail hawk at the ranch where our sheep are grazing - I know Sami’s checking in on me.

That said, I’m beginning to see that at some point I will need to cease keeping myself so busy that I don’t have time to grieve. I will need some time to simply live with my sadness - to acknowledge how much I miss Sami; to acknowledge how hard the last seven months were. I know that I’ll miss her terribly when I visit the places we enjoyed together, but I also know that I will need to visit those places. I know that the holidays (which for me always began with her birthday on November 10) will be especially difficult. But just as we had to walk the path that glioblastoma laid before us, I’ll need to walk through (and with) my grief.

Samia Z. Macon (1967-2023)

Samia Zaki Macon passed from this life on August 13, 2023 following a diagnosis of glioblastoma in February 2023. She was 55 years old. She was home and surrounded by her family.

Samia was born on November 10, 1967, in Cairo, Egypt, to Sami Sami Zaki and Barbara Zaki (Perrin). The family moved to Ceres, California in 1968, and later to Burbank, California, where Samia attended elementary and high school at Village Christian School. She graduated from UC Davis with a degree in biological science in 1989, and with a doctorate of veterinary medicine in 1994. Samia married Dan Macon in Sonora, CA, in August 1990.

After working for Loomis Basin Large Animal Clinic in Loomis in the late 1990s and early 2000s, Samia started her own independent mobile large animal veterinary service in 2004. While she worked primarily with horses, mules, and ponies in Placer, Nevada, and Sacramento Counties, she also worked with commercial livestock producers throughout the region.

An avid horsewoman (and later, mule-woman) herself, Samia enjoyed riding and showing horses and mules, including her mule Boomerang. In her veterinary practice, she became known as someone who would treat “long-ears” (mules and donkeys). While her daughters were young, she volunteered as a 4-H horse and sheep group leader, sharing her knowledge and love of animals with Placer County youth. She showed mules in local horse shows, as well as at Bishop Mule Days. And she enjoyed trail riding with her family and friends.

Samia and her husband Dan also raised sheep throughout their 33 year marriage, ultimately starting Flying Mule Sheep Company in 2006. Sami always raised the bummer lambs - in February and March, she typically bottle-fed several lambs (or more!) in the family’s living room! She also cared for the ranch’s herding and livestock guardian dogs.

Throughout her career, Samia was active in community organizations. In addition to serving as a 4-H leader, she served as President of the Placer High School Future Farmers of America Boosters and the Placer High School Lady Hillmen Soccer Boosters. She was appointed to the 20th District Agricultural Association (Gold Country Fair) Board of Directors by Governor Gavin Newsom in 2018, and served as the board representative to the Gold Country Fair Junior Livestock Association, helping to manage the fair’s junior livestock shows and auctions.

Samia is survived by her husband Dan Macon (of Auburn, CA), her daughters Lara Macon and Emma Macon, and her sister Suzi Zaki. 

A Celebration of Life will be held at the Gold Country Fairgrounds in Auburn, CA, on Saturday, December 23, 2023. For more information, please contact Dan Macon at flyingmulefarm@gmail.com or (530) 305-3270.

In lieu of flowers, the Macon Family invites you to contribute to the Samia Macon Memorial Scholarship through the Placer High School FFA Chapter. Checks can be made out to Placer High FFA Boosters, 275 Orange Street, Auburn, CA 95603 (Attn: Sami Macon Memorial Scholarship).

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).

Where We Are on this Map

While I’ve completely embraced digital maps and global position system (GPS) technology, I still enjoy using paper maps - especially topographic maps. Paper maps rarely crash; on the other hand, finding exactly where I am on a paper map takes more skill than following the blue dot on an aerial photo map on my phone. I enjoy trying to figure this out!

In some ways, our experience with Sami’s glioblastoma over the last seven months has felt like navigating with a paper map as it’s being drawn. Part of this, I think, has been the fact that there is no outward visible manifestation of her tumor - we can’t see or feel any lumps or abnormal growth. Instead, we see neurological and cognitive symptoms associated both with swelling and tumor growth. 

When the neurosurgeons we saw in January and February started talking about primary brain tumors, astrocytomas and glioblastomas, we started researching these cancers and their prognoses. As I’ve written previously, we learned that these cancers were manageable (hopefully) but not curable. We learned that fewer than 20% of patients diagnosed with glioblastoma survive for more than 2 years following diagnosis. Our research, and our questions of Sami’s doctors, began giving us a rough idea of where we were on this journey.

When Sami ended up back in the hospital in mid February (following her first craniotomy in late January), we assumed that the tumor had started to regrow quickly. As Sami’s neuro oncologist at UCSF pointed out when we saw him in March, however, we had no way of really knowing - inexplicably, the first neurosurgeon had failed to order a postoperative MRI to determine how successful the surgery had been. Looking back, this felt like a major landmark had been left off our map. The oncologist also explained that the pathology report suggested a relatively low proliferation rate - in other words, the tumor did not seem to be especially fast growing, which seemed hopeful at the time.

My earlier blogs record Sami’s experience with the first round of chemotherapy (with an oral drug called Temodar) and the concurrent six weeks of radiation treatments. As this wrapped up, she felt pretty lousy - which the doctors said was due to brain irritation and swelling associated with the treatment. At the end of her first round of maintenance chemotherapy, she suffered a major seizure and ultimately spent the first three weeks of June in hospitals. The MRIs she had during this phase of the journey hinted at “flares” and “evidence of disease progression,” but we came home with the understanding that Sami’s difficulties with walking, remembering, and speaking were due to ongoing brain swelling. Nobody, including us, seemed terribly worried about new tumors.

On July 11, we went back to UCSF for a full day of appointments (MRI, oncologist visit, and an Avastin infusion). Sami was unable to hold perfectly still for the MRI, resulting in less-than-clear images, but we left the oncology appointment with the impression that the swelling in her brain was subsiding, and that she’d be able to reduce the amount of steroids she’d been taking to control this edema.

The day after our visit, however, the doctor called and said the radiologist had found evidence of two new tumors in Sami’s brain - one on her cerebellum and one on her left occipital lobe. He said the fact that these new tumors were so far removed from the first mass (on her left frontal lobe) suggested that the cancer was more aggressive that we’d thought, and that the Temodar chemotherapy had been ineffective. He said we should consider another chemo drug. I felt like we’d reached a new landmark on the map. I also felt like the wind had been knocked out of me.

Towards the end of that week, as we tapered the steroids, Sami’s condition began to worsen again - she had more brain fog, and she fell several times. While she’d been able to move around the house with a walker (but without our help) when she came home from the hospital, we found that weekend that we needed to help her at all times to keep her from falling. We talked to the doctor on Sunday, July 16, and he said we needed to increase the steroids again.

Over the next ten days, we talked with Sami’s UCSF team several times. Finally, this week, we learned that her ongoing (and worsening) symptoms were a direct result of the disease progression (in other words, the new tumors), not because of brain irritation and swelling associated with surgery and radiation. We learned that some glioblastomas are genetically imprinted with resistance to chemotherapy (and that nobody seems to know why). We learned that the Avastin infusions Sami has been receiving had not been as effective at reducing swelling and limiting tumor growth as her doctors had hoped. And finally, we learned where we are in the likely timeline for the ultimate progression of Sami’s cancer - more likely a matter of months than of years. We found where we are on the map.

Obviously, this was a difficult week for all of us, and yet I feel somewhat better oriented now that I know where we are. To some degree, I think Sami feels the same. She has struggled emotionally and mentally since the initial diagnosis (who wouldn’t?!); over these last several days, she seems more at peace to me. I am afraid of what comes next (as Sami’s symptoms multiply and intensify), but I’ve also realized this week that I’m doing things for Sami today that I didn’t think I was capable of 8 months ago. I’ve also realized that my prayers for Sami are evolving; rather than hoping for a cure (or at least long-term management), I pray that the time we have left together brings us some peace - and that her ultimate passing doesn’t involve more suffering and pain.

As this new reality has settled in my heart and in my mind, I’ve also noticed that I’m taking a great deal of pleasure from very simple things around me. A ripe tomato in our garden; a Common Merganser hen and her 15 chicks swimming by me as I fished on the Little Truckee River; a home-cooked meal enjoyed with Emma and Sami. A few nights ago, as Sami and I were sitting on the edge of our bed, she put her head on my shoulder - something she hadn’t done since before her hospitalization in June. I found it hugely comforting. I remain sad, angry, anxious, and frustrated, but these little bits of peace and grace and light have helped calm me. I hope I remain open to them.

Finally, thank you to all who have reached out with thoughts, help, and support. And thank you to all who have followed our journey. I write mostly for me - but I also hope that writing helps others process what they may be facing. A good friend told me this week that sometimes it’s hard to talk about our own experiences with cancer (as a patient or as a caregiver) because we realize that everyone’s journey with this disease is different. The map of our journey is unique to us; but knowing that others have navigated similar maps is helpful for me. Thank you.

 

Mid-July Update

At the end of another long and difficult week, I wanted to provide a quick update on Sami’s journey with glioblastoma. I think I can safely say that all of us - Sami, Emma, Lara, and me - are exhausted and worn down. So here’s my mid-July update:

Sami had a regular check up at UCSF on Tuesday. We started with an MRI and then raced across town in San Francisco to visit the neuro oncologist. While the MRI images were not great (mostly because Sami found it difficult to hold still), the doctor compared the images this week with the images from the beginning of Sami’s hospital stay in late May. He showed us that the swelling had subsided substantially - which was very positive news. He told Sami she could start tapering off of the steroids she’d been taking to control the swelling. Finally! The steroids bring their own side effects, and Sami is ready to be done with them. We also had a good talk with a social worker about Sami’s emotional and mental health. We were exhausted when we finally rolled back into our driveway at 9pm (13 hours after we’d left home), but we all felt a little more hopeful.

Wednesday evening, as we were finishing up dinner, I received a call from the neuro oncologist. I’ve written previously about our frustration with lack of communication from Sami’s health care team; on the flipside, getting a call after hours from the doctor rarely brings good news, and this call was no exception. He told me that the radiologist had contacted him regarding Sami’s MRI, and had told him that they had seen two new lesions on Sami’s brain that he (the oncologist) hadn’t seen - and that he hadn’t mentioned to us on Tuesday. These lesions were significant enough that he told me that the current chemotherapy wasn’t working. And he told us that Sami’s best option was a stronger chemo drug (with potentially greater side effects).

I felt like the wind had been knocked out of me - I think we all did. I asked if we could talk over this new development as a family and come back to him the next day with our questions. Of course, he was traveling the next day, but he indicated we send him an electronic message that someone in the office would respond to. As of this evening (Friday), we haven’t had any answers. Despite our questions, however, Sami has decided to give the new treatment a try with the hope that it will slow the progression of the disease better than the first chemo drug. She’ll also continue with infusions designed to limit the blood supply to the cancerous tissue.

All of this is occurring against the backdrop of continued mobility challenges. Sami is able to navigate our house with the aid of a walker, although we are finding that she is at risk of falling when she’s especially tired. And one of the things the social worker helped us all understand is that we all have some anger about this situation that has nothing to do with the quality of the health care Sami has received. We’re angry at the situation - the fact that my active, smart, successful wife has had much of what made her active, smart, and successful stripped away.

As I wrote in my last blog (Home… for Good), we are not planning to go back to the hospital. We all hope this new treatment brings a window of relief, but regardless, we will go through this next phase at home. 

Finally, I want to end with a few thoughts that have been floating around my head about how we talk about things like this. Talking about cancer - any kind of cancer, I think - is difficult. What do you say to someone who has cancer? What do you say to someone who’s caring for a loved one with cancer? Before our personal experience with glioblastoma, I mostly avoided the subject, I’m afraid. I offered help, offered condolences, but quickly moved on to other subjects - mostly out of my own discomfort. Sometimes, I’ll admit, I didn’t say anything.

Today, I find that our situation is all-consuming. It’s all I think about - even when I’m thinking about something else. And so I find myself annoyed at times when it’s not what other people are thinking about. This week, I realized that many of my friends are probably as uncomfortable as I have always been about discussing what we’re experiencing.

My own uncertainty and anxiety have made me grumpy. I’ve told several people over these last few months that I had a very short fuse. I hate that about myself - I hate being that pissed off guy who takes offense at a very minor insult and ruins someone else’s day. But that’s where I am.

That said, I have finally realized this week how much a simple “I’m thinking of you guys - how are you doing?” means to me. Thank you to our friends and family, who continue to help out, to check in, and to ask how we’re doing - you help us get through each day.

 

Home... for Good

At the end of May, we took Sami to the emergency room in Roseville - our third trip to the ER in four days as Sami wrapped up her first maintenance course of chemotherapy. The following morning, Sami was transferred to UCSF - she was in San Francisco for just over three weeks (the better part of June - at UCSF for treatment through June 11; at Saint Francis Memorial for rehab until June 20). While I made several runs home during that stretch - for Sami’s chemo medicines, for a work meeting, and for my own sanity - I mostly stayed in San Francisco, too. One evening, over dinner (from the Trader Joe’s around the corner from Saint Francis Memorial, a welcome break from cafeteria food), Sami and I talked about what we were most looking forward to doing when we returned home. And we talked about Sami’s wishes for being home from this point forward.

As big cities go, I actually kind of like San Francisco. The combination of hilltop landmarks and a street system laid out on a predictable grid (for the most part) helps a hayseed like me navigate. I find that I need to see the horizon to know where I am; that’s why I love open country. But staying in The City (as we Northern Californians refer to San Francisco) wore thin for all of us. I found myself wanting to wake up in the morning to the sound of birdsong and the hungry mules in the barn, rather than honking horns and the hum of the hospital. When I woke up in the middle of the night (which is a regular occurrence in my mid 50s!) I wanted to hear the great horned owl that roosts in the gray pine near our bedroom, or the coyotes singing (hopefully not from the back pasture), rather than sirens and squealing tires. Sami was looking forward to these things too - and to enjoying the sunshine from our back deck, and being in our vegetable garden.

We had to work on some logistics when we got home for Sami to be able to do these things. When we left home in late May, the swelling in Sami’s brain meant she was unable to walk. Thanks to the treatment she received at UCSF, and the occupational and physical therapy she had at Saint Francis, she made progress towards walking again, but her mobility still requires a walker and a wheelchair.

In talking about home one evening while we were at Saint Francis, I asked Sami a difficult question, one that I’d been avoiding. I asked her if her symptoms worsened again, if she wanted to come back to the hospital. We’d danced around this question a bit when we decided to go to UCSF in late May - all of us know what glioblastoma means with regards to a long-term prognosis. The deciding factor in late May was that the UCSF team told us that they weren’t ready to say they couldn’t help Sami feel better again. While Sami’s progress has felt exceedingly slow, she has started to feel better, thankfully - but the right-side weakness and brain fog persist. As I write this, two-and-a-half weeks after returning home, someone needs to be with Sami all of the time.

Sami told me that evening that if things get worse again, she wants to stay at home, with the help of home-based healthcare, and ultimately, with hospice care. These conversations are exceedingly difficult, and exceedingly important. Sami and I have both signed advance directives that state, “I do not wish to artificially prolong the process of my dying if continued health care will not improve my prognosis for recovery or otherwise enable me to live a productive and/or enjoyable life.”

Part of our conversation that evening revolved around the last part of this sentence - what is a “productive and/or enjoyable life?” Each of us probably has a different definition; for Sami, she said she missed working. I would to - we’ve both been fortunate to get to do work that we are passionate about, work that fulfills us. I missed working while we were in San Francisco; I can’t imagine what it would feel like to know I wouldn’t be able to work again.

In another section of our advanced directives, Sami and I give each other the responsibility to make decisions about these matters in the event we ourselves are incapacitated. We talked about what this meant when we worked with our attorney to draft the language many years ago; reading this language now is more sobering. How will we know? What do we mean by “incapacitated”? Incapacitation isn’t an on-off switch - now that I’m faced with this in reality, it seems like an awesome responsibility. How will I know if taking Sami back to the hospital will “artificially prolong” her life without any prospect for productivity or enjoyment? What exactly do we mean by “quality of life?” 

Throughout this experience, I’ve been reminded of one of my favorite pieces of fiction by Wendell Berry, a story titled Fidelity. I won’t try to summarize it here, but it is perhaps the best thing I’ve ever read about the conflict between our medical system and our sense of humanity and community. I encourage you to read it. As a livestock producer, I suppose, I’ve always thought about what death means - biologically, emotionally, and spiritually. To paraphrase my friend and fellow sheep rancher Al Medvitz, death is not the opposite of life. The process of dying, however, can be frightening and incredibly difficult. As I think about what Sami and I are really trying to express in our advance directives, it might be that we both, to the extent possible, want the final steps in this process to happen at home, with our loved ones around us. As Berry’s story suggests, the entire insurance-medical complex is arrayed against us. But I feel like we are home for good.