I seem to have more to write about than time to write updates these days. And when I meditate and watch my "monkey-mind," it is sometimes in "blogger" mode -- crafting things to say in this semi-public forum about what my life is like. I've mentioned before, I think, that having this place to write has been very helpful to me. I think it makes me more mindful about what I am experiencing, to have a practice of writing about it; and sometimes, when I am having a hard time, it helps me be more in a place of choice about what to focus on. I realize I have a lot of authorial influence over what "stories" I live within, and knowing that I will be telling those stories, or some of them, to all of you, reminds me of that. I'm also aware, though, that I don't want to slide over into "performance" mode -- where I am pretending to myself about what I'm experiencing, in order to be able to convey a "better" story. I am committed to authenticity, as much as possible (even knowing that to some extent "authenticity" is also a story -- a social construct in our society that we collectively value and often poorly understand -- a fellow grad student did his masters' thesis on this back when I was in school in sociology!) What I mean by authenticity, I guess, is that I want to be as honest as I can be with myself and the people around me about this experience -- at least in measured doses that make sense given the context, social norms, my own comfort level, and what lessons I feel are most important for myself and others, etc.[...]

A few years ago, my step-son Sam who has a disability found this article about "spoon theory," written by a young woman with Lupus to help her friends understand what life with a chronic illness or disability can be like. It's about going through the day with a limited amount of energy, or "spoons," and needing to make mindful and sometimes difficult choices about how to use that energy. It applies of course to aging as well, and since reading it we often use shorthand, asking Sam or each other "do you have enough spoons for ____?"  [...]

On April 13th Jen wrote in her post to me: "I just learned a new word from a book I was reading: polepole (Swahili, pronounced polay polay) which means "slowly, slowly." Guides say this to people climbing Mt. Kilamanjaro as a way to help them sustain energy and reach the summit in a more fluid and graceful way than people who push too hard and fast and are wiped out at the pinnacle of success. It seemed like a fitting expression to share with you for the journey you are on. Polepole, Becca!"[...]

The trip to California went very well. It was short (sorry to my Bay Area friends & colleagues to not even try to see you!) but very sweet.  The Bar & Bat Mitzvah service was at Kehilla Community Synagogue, a wonderful Berkeley/Oakland Jewish Renewal congregation. My niece and nephew, Kaja and Tavi, did brilliantly, and I cried through most of the service, in part due to their talented, coordinated, heartfelt, and at times comic Torah readings and speeches, and in part because their biological mother, Kerstin, died of pancreatic cancer just after they turned 6. This was one of the first occasions since then that all of us who cared for her and the kids during her illness were together again, and it was the 7th anniversary of her funeral. She was there in spirit in so many ways (and, disconcertingly, there was a member of the congregation who looked remarkably like her from behind and the side – causing many of us to do shocked double-takes, and whisper amongst ourselves about it). Most of Kerstin’s family, which is a complex one with multiple sets of step- and half-siblings, were there to celebrate (and many were also mourning the recent & sudden death of Kerstin’s stepfather, Tom). The twins’ wonderful adoptive mother, Margot, has been in their lives since (I think) 2010, and her lovely extended family were all there as well. While I missed having Don and Sam and Sarah there, having Anita with me was a big treat. We talked non-stop the whole way there and the whole way back, and in between every event, and made the most of the opportunity for her to get to know my family better. She’s very good at connecting with people, and I loved getting to hear her perspective on some of the people she talked with. I felt pretty well most of the time, and even totally “normal” some of the time. I had great conversations with a lot of people -- something about having cancer really helped us make the most of the short opportunities to connect amidst the hubbub of large gatherings. We shared memories about our own B'nei Mitzvah experiences, which led to other storytelling...  It was also great to be with family on my birthday, and they surprised me with a chocolate mousse cake, singing, and presents in the middle of the Sunday morning post-B’nei Mitzvah brunch. Later that day we went to Palo Alto where my sister and my other niece and nephew live, and I finally got to meet their new dog, Lily![...]

The last couple days I've been feeling close to "normal." I was even able to swim in & coach the "fast" lane at Special Olympics last night! Overall the side effects of the second chemo treatment remained considerably more manageable than the first. I'm now gearing up for a weekend trip to the SF Bay Area for my twin niece & nephew's Bar & Bat Mitzvah! It's also my birthday on Sunday, and I'm looking forward to time with extended family, and also time with my close friend Anita, who will be accompanying me! (A note of surprised gratitude to Southwest Airlines, who made an exception to their "no transfers" policy when they heard my situation, and allowed me to apply credit from Don, Sam & Sarah's airline tickets to a ticket for Anita (with additional credit to spare!)[...]

Well the last couple of days have been lovely in many ways, though challenging in others. I've had some discomfort -- acid reflux (still adjusting dosing of antacids) and fatigue and light-headedness. Despite that, I've been able to enjoy the delicious foods people have brought us, and have had lovely visits with friends, including a lot of time outdoors -- yesterday walking in the park & zoo with Celeste, and then Grant and Tina and I inhabited the new front patio for a while -- this is a space Don & I had created last Fall and haven't spent much time in yet.[...]

Much of today continued to be better than last chemo round. I didn't sleep all that well last night (I think it might have been hormonal) so I was tired today, but was able to eat fairly well without problem -- though tonight my stomach is feeling bloated and gassy.  Today I had a lovely visit from a new friend, Laura, who is a wonderful listener and we found we had many interests in common.  [...]

Well, I made it through the evening with only one moment of queasiness and only a moderate amount of gassiness, and slept quite well after taking a lorazepam. I woke up earlier than I wanted to and only dozed for a while after that, but was feeling happy not to be uncomfortable!! Finally I got hungry around 6:30 so I got up to figure out which meds I need to take before, during, and after my small (to start with) breakfast of more potato salad and seaweed and 1/3 of a banana. That all seems to be sitting well so far!! I'm allowing myself to feel some real optimism that this treatment will continue to be much better than the first one...![...]

Well the chemo treatment ended about 4 pm and so far I don't feel as bad as the first time -- though the treatment also was a couple of hours later in the day, so we'll just have to see how it goes. I very much enjoyed hanging out and catching up with my old friend Beth R. who came to relieve Don after the first couple of hours at the clinic. Right after I got home Judith H. came to lead me in a guided relaxation/visualization. After that I felt slightly hungry and ate a little potato salad that Celeste dropped off last night (thanks, Celeste!). I also seem to be enjoying slightly salty snacks so have been nibbling on seaweed and gluten-free matzo while watching Masters of Sex -- a TV show based on the life of Masters & Johnson which was independently recommended by one sibling on each side of our family, so we figured it was worth a try; liking it so far! I've also been working on noticing the stomach sensations and trying not to be in a story about "oh no here we go again." It seems to help -- just noticing the sensations, and relaxing a little around them. Perhaps much of the nausea last time was fear. And, they've got me on a different combination of anti-nausea and ant-acid meds now, so maybe that will help. As before, the nurse was adamant that if I don't feel better than last time, I should let them know and they would try "plan c". While I'm not strictly opposed to losing 4 pounds per treatment (my estimate based on the 5-pound difference at weigh in today, but this time I'd removed my cell phone from my pocket, and I have a fair bit less hair!), it would probably be better to be able to eat a bit more this round![...]

Last night I had a little trouble sleeping -- my cough from my cold kept waking me up every few hours, and I would have trouble falling back asleep. I realized I was feeling anxious about the upcoming chemo treatment when I found myself mentally packing for the trip to the clinic -- organic popsicles, snack food, etc... Part-way through the night -- I think I was more asleep than awake -- I found myself dreaming or imagining I was editing a word-processing document; I had two files open, and whenever something I thought belonged in the "don't need to worry about this yet" category came up, I would mentally "cut and paste" it from the main, single-paged document I was focusing on, into another, long and rambling file of things to worry about later. This actually was helping me get back to sleep, I think!  Not bad for semi-consciousness, eh?[...]