May 24, 2024 - I normally use my blog posts to share information, perspectives, and ideas - and I usually try to organize my essays better than this one. I apologize for this disorganized post - thanks for bearing with me.
For more than 20 years, I’ve kept a weather journal. I’ve recorded high and low temperatures, precipitation, and significant natural events (like the first Oriole of the spring, or the day I see Sandhill Cranes in early fall, or the date that the first lilac blooms). On days when I’m not home, I try to record where I was. And, occasionally, I record other significant events - things that happened in our family’s life.
Last night, when I recorded the day’s weather, I saw my entry from May 23, 2023. In addition to the weather observations I made a year ago, I wrote simply, “seizure.”
Seeing the word took me back to last May. Emma and I had just returned from moving her into her new apartment in Idaho, and Lara and Micah were still staying with us in Auburn. On that morning, I recall getting out of the shower when one of the girls came running into our bedroom to tell me that “Mom is having a bad seizure.” They had already helped keep Sami safe and called 911 by the time I was able to join them in the living room, a minute or two later.
Looking back, that singular episode was confirmation that Sami’s glioblastoma was progressing - only I didn’t fully realize it at the time. We’d learned the week before that an MRI at UCSF had shown another “flare” on her brain, which meant she wasn’t eligible for a clinical trial. After they checked her out at the emergency room in Auburn on the morning of her seizure, they sent her home - but over the next week, she grew progressively weaker and had more difficulty walking. By Memorial Day 2023, we decided we needed to go back to the ER. She was unable to walk to the car.
When we arrived at the ER in Roseville, the doctor told us we should be thinking about hospice care immediately - which was terribly upsetting to all of us (especially Sami). We finally talked to her medical team at UCSF, and the nurse practitioner told me, “We’re not ready to say we can’t help Sami any more - she needs to come here.” Early the next morning, Sami was transferred to UCSF.
Ultimately, the team at UCSF figured out that Sami was continuing to have subclinical seizures. With a change of anti-seizure medication and an additional cancer drug, we left San Francisco three weeks later exhausted but a bit more hopeful.
But looking back, I’m not sure UCSF was able to help much after all. In mid-July, we learned that Sami had two new lesions on her brain. At the end of July, she suffered another significant seizure. By mid-August, glioblastoma had taken her life.
If I had known a year ago today what lay in store for Sami, I don’t think I’d have changed anything we did last summer. But last night, as I read last year’s journal entry, I realized that Sami’s seizure marked a transition to a new stage of Sami’s cancer - a transition I hadn’t completely understood when it occurred.
In February 2023, after Sami’s second craniotomy, I listened to an episode of the podcast, “Terrible, Thanks for Asking.” Podcast host, Nora McInerny, lost her partner to brain cancer. In the episode, she interviewed a man who’d lost his partner, too - and they talked about “death with dignity” laws.
After her first surgery, Sami had made us promise that if she didn’t want to continue chemo and radiation treatments, we had to let her make that decision. And at some point, she must have said something about being more “proactive” in ending treatment - I don’t remember what she said, but just before her second surgery, I purchased a gun safe for my hunting rifles (which had been in a locked cabinet) and for Sami’s veterinary euthanasia drugs, because I was worried that Sami might do something drastic. Ultimately, by the time Sami asked her medical team about California’s End of Life Option Act (which allows terminally ill patients who are of sound mind to receive medical aid in dying), we were told that the process would take longer than Sami likely had left. Reflecting on all of this today, I am beginning to realize that Sami longed for some control over her life (and ultimately, her death).
This spring, I’ve struggled with a sense of sorrow that Sami wasn’t able to articulate her hopes for the girls, or for me. I guess I had hoped that once we all knew she was dying, and that her passing was imminent, we’d be able to have deep conversations about what our lives together had meant to all of us, and about what we hoped our futures would hold. From the distance now of more than nine months, I am beginning to think that Sami’s sorrow and fear were not entirely due to the fact that she knew she was dying. Sami was such a strong and independent woman for her entire adult life - I think much of her sadness and distress came from a fear of having to depend on us for even the most basic functions of living. I think she feared being a burden. And I think this helps me understand her desire to control the nature of her passing, which was so hard for me to comprehend in the moment.
May 2024 has been a difficult month for me - I’m sure in part because of the mental processing I’ve just described. The month of May also brought the first Mother’s Day without the mother of my daughters - difficult for all of us. In addition, I listed our home for sale - and accepted an offer (it’s now in escrow). I started looking seriously at homes in Calaveras County, where I’ll be working come October. I learned of the loss of a colleague and also of a neighbor to cancer. I gained greater clarity about what my mom is going through, and about the realities of helping my parents navigate this new chapter in their lives. I sold most of my sheep, which I described to a friend as feeling like I had finished a really great book that I didn’t want to end. I realized (again) how much Sami and I used one another as a sounding board and a reality check - and how much we shared the load of day-to-day living. Coming home to an empty house remains difficult.
Which brings me to a few thoughts about friendship. A friend who’d lost her husband several years ago called me when she learned I’d listed our home for sale. She told me that selling her home (which her family had lived in for more than 40 years) had been difficult but helpful. She felt as though she’d been able to leave the painful memories of losing her husband at the old house, and that the happy memories moved with her to her new home.
Personally, I find that I sometimes need reassurance that I’m still able to function - that I haven’t totally let myself, our house, our critters, or our property descend into total dishevelment. I wonder, at times, if my friends are checking in on me to reassure themselves of the same thing (and to help out when needed)! Time and again, my true friends have held me up - they’ve made me laugh and let me cry. They’ve let me be alone when I’ve needed solitude. They’ve been gracious when my social batteries are drained and I can’t bear to be around anyone, and in some ways, I suppose I've self-isolated over this last month. But my friends keep inviting me to do things even when I say no. I’m incredibly thankful, and I hope they keep asking!
I’ve also realized that some people I thought were friends have not been helpful. Some have not reached out at all; others have acted as if it is time for me to “move on.” Slowly, I’ve been letting go of the hurt and anger associated with these “friendships.” Maybe that’s what moving on means.
And finally, I have to say that I’m so grateful for having a new puppy. Even though the house is empty, Ky’s energy and joy make coming home easier. I cannot watch Ky and not smile!
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