Bookmarks All Over the Floor

Bookmarks everywhere

My son Ben, starting in his early childhood and lasting into adolescence, collected bookmarks. Our local library had free ones that they rotated on a monthly basis, sometimes adding additional bookmarks for some holidays. Other family members, aware of his penchant for bookmarks, would pass along ones they had tucked away at home or that they came across during vacations or other outings. Bookmarks were inexpensive and found in every museum, gift shop, or other sites, and Ben acquired many that way. In short, Ben had a lot of bookmarks.

A. Lot.

I still have many of Ben's bookmarks, kept in a vintage popcorn box from our local vintage movie theater. As an avid reader, I always keep some at hand: one to mark my place in the book, and others to mark pages I want to return to for lines to copy into my current commonplace book (Volume 5). 

Ben's former collection, now my collection

So there are still a lot of bookmarks in this house. But the image of bookmarks recently rose to new prominence. 

In late October, Warren and I traveled to Rochester, Minnesota, for an appointment with Dr. Nelson Leung, my myeloma specialist at the Mayo Clinic there. My myeloma has been remarkably stable for over a year now and, after my June appointment with him, we were eager to have him weigh in with his thoughts as to my prognosis. 

The day before my Mayo appointment, my longtime dear friend Tani and her husband Tom (who is also a dear friend; I just have known Tani way longer) came down from Minneapolis to see us. I shared with them what we were waiting to discuss with Dr. Leung: where am I on the myeloma spectrum? I told them both, "I didn't expect to live this long! I'm not prepared!"

Tani laughed. "You'll just have to learn to be a little old lady like me!" (For the record, I am SIX MONTHS older than Tani.) We all laughed.

I was not exaggerating when I said "I didn't expect to live this long! I'm not prepared!" When I was diagnosed with myeloma in November, 2004, the average lifespan post-diagnosis was five years. Five. Seven to ten years was a stretch. And while my then (and still now) local oncologist Tim emphasized at our very first meeting "to pay no attention to the stats, because everyone is different," I nonetheless knew what the stats were. I just hoped I got enough time to see my youngest son, Sam, who was then 14, make it to age of majority. 

In the years that followed my diagnosis, there were up and downs, including the 2005 tandem stem cell transplants that failed in 90 days (which, as I learned years later from Dr. Leung, was a red flag marker for likely dying within the next 18 months post-failure), treatments that did nothing for me or set me back, and so. Just life in Cancerland.

So I never planned on reaching 20 years out. Ever.

That afternoon at Mayo, Warren and I waited for Dr. Leung to come into the examining room. And when he came in and we talked and asked questions and received answers and shared other information and talked some more, his bottom line emerged: I am very, very stable. So stable that I will not resume treatment in the foreseeable future, so stable that I can step back from labs every 4 weeks (when I see Tim), so stable that I can step back from going to Mayo so frequently, so stable that I can step back from...Cancerland.

Myeloma is incurable, period. But sometimes a patient will be so stable that it is almost like living without myeloma. (And, I do have two other myeloma-related blood disorders, but they too are very stable.)

All three of us were laughing and exclaiming and a little teary. I then blurted out to Dr. Leung what I had just said to Tani the day before: "This is great but I never planned to be 68 years old!" 

Dr. Leung laughed that another patient, also doing unexpectedly well, joked that he would have been more careful with his money management had he known.

I shook my head. "No, I'm not talking about my finances. I mean, I never expected to live this long and I don't know what to do."

Before Dr. Leung could reply, the perfect image came to mind.

"It's like I have been reading a big book, marking places as I go, then dropped it and all the bookmarks fell out. I don't know where all the bookmarks go!"

I am not sure I yet know where the bookmarks all go. After all, it's only been a month since that new prognosis arrived and it is still sinking in. Wherever I am in my book, I do know there have already been far more chapters than I ever expected back when Tim first diagnosed me. 

Bookmarks all over the floor. Trust me, it's a good problem to have. 

That's One Small Step For...Me

How I Step

As I wrote in my last post, I am taking steps to unplug (de-plug, turn off, step away, whatever word fits best) myself from the e-world and even just computers, period. I use a Mac Mini in my study; I turn it on only when I am working on matters like Justice Bus, paperwork for my dad, Hyer Percussion (my husband's business), tracking our monthly grocery spending (Spoiler alert: we're not going to hit that $200/month average!), typing this blog, or when, related to any of those things, I need to print something off. I turn it off when I am done using it for the day, which sometimes is by mid-morning. I use a Chromebook for more casual things (checking email, for example), and have gone back to shutting it off by about 5:00 p.m. I have a smart phone, but since getting it a little over a year ago, I have steadfastly used it for texting and calls only—no social media, no emails—so it too stays silent most evenings.

Unplugging sounds right and I know from past experience that it is the best thing for me to do, so that I can use my evenings for more personal tasks and matters. That being said, the habit of constantly checking things online is hard to let go of. Here's an immediate example: this afternoon I have a phone conference with Dad's longtime financial advisor. I will be joining Dad in his apartment and taking notes as we go. Last night, as I was penning this post out, I knew there was an email from the advisor touching on topics he knew Dad wants to address. I had to tell myself more than once that the email could wait until the morning. The meeting is not until 1:30; there was no urgency to go over that email in the evening. And it was a short email, not a detailed one, to boot! 

Vlogger/writer Anthony Ongaro used to have a site, Break the Twitch, in which he talked about this very point of constantly checking our phones, our emails, our whatever and how our brains were accustomed to doing this so much that it was an automatic reflex. Hence, the twitch and his suggestions for breaking it. (The site is still online but it is no longer updated.) 

I get the twitch concept. It hit me hard last night with regard to that email. I had to talk myself down from the twitch cliff. There is reading, writing, household tasks, paperwork (physical not online; Dad had massive amounts of papers in file folders that I am still sorting through): anything but jumping online to check that email, look at this, look at that.

I'll get there: step by step. 

Moving Forward, Maybe, Again, Still

Sunday morning around our table

Just when I thought things were smoothing out, another bump (not a fork) in the road reminded me that life was, well, life. There was another hospitalization for Dad a few weekends ago, the second in a two-week span, resulting in some longer setbacks that he is slowly progressing from. The time spent with him at the hospital and at his apartment in assisted living—not just with him but with staff, nurses, doctors, therapists—took its toll on me—physically and mentally and emotionally—and finally, I think, I hope, I am getting back on my way. 

No surprise, my way looks different. It always does after such an event.

Despite election results (for me, they are horrible), life moves forward. What was clear before and certainly after Election Day is that my focus has been and continues to be (and has to continue to be) on the least of us in our community.

This is not me ignoring the reality of the national elections and the dark days that may well be ahead. But joining in the screeds on social media about the outcome does nothing to change the fact that here is where I need to work. 

As my good friend and boon companion Judy said the day after, in response to another friend's anguish, yes, mourn the results today, and then we move on and do our work going forward. Our monthly Justice Bus (which all three of us are heavily involved in) is the first Thursday of each month, which was two days after the elections and, regardless of the results, those in our community with lesser means needed our support now.

So on we worked.

Our Symphony had a concert Saturday night that featured a stunning world premiere of a concerto written for orchestra and theremin. (Here is the YouTube link for it; the composer comes on at about 24 minutes in to explain the piece, and it goes from there.) Sunday, thereminist Caroline Scruggs, the guest artist, and her husband Matt Fattal (a formidable musician himself, among other things) came to breakfast at our house. We sat around the table sharing food, telling stories, sharing dreams and goals, and talking about the very same point that Judy and I discussed: that for some of us, we have to turn our attention and focus to those around us.

So on we work.

After they left, Matt posted a note (and photos!) on Facebook. His summary of our discussion was spot on: "Surround yourself with good people that move the world forward. Try not to be a jerk. I think that's it." 

Yes, that's it.

**********

On a personal note, I am trying to get back to a more regular pattern of blogging. Sam at Sam Squared recently touched on that very topic, and Laurie at The Clean Green Homestead has her blogging routine down cold. I am not sure what that will look like for me—a post a week? Two posts a month? More?—but I need this. 

Related to that commitment, for my own personal satisfaction, I am returning to writing my blog out by pen and paper, then typing it in later. I strongly believe (and am reminded whenever I put it into practice) that writing is not just an intellectual process but also a physical process. "Your hands are your interpretive tools," said writer Richard Wagamese; I keep that quote taped to my wall in my study. I wrote most of this last night by pen and am entering it this morning. I am also recommitting to stepping farther away from the electronic world—social media, checking email constantly (and realize I do not check email on my phone ever), YouTube, to name a few—and spending my evenings reading, writing, doing household tasks. (Gregg at Not Buying Anything recently summed that last activity up succinctly: "After enlightenment, the laundry." As I pen these words Sunday evening, I just finished hanging the second of two loads of laundry in the basement: talk about sweet serendipity.)

The 2024 Gardens: Part 9

A few weeks ago, while writing about my reentry into canning, I noted that I had taken down our kitchen garden (the Hej garden had gone down a few days earlier) with the threat of a solid frost.  I picked everything that was ripe:

Tomatoes filling our window sill

Or soon to be ripe:

Ripening

But the gardens themselves were down. 

Given the trip to Mayo (which went swimmingly well) and then some health issues with my Dad, I have not yet gotten back to clearing away the tomato vines and other plants that did not fit in the yard waste containers:

The kitchen garden after I tore most of it out

It's autumn. Our days have returned to balmy temperatures. There is a concert coming up (Warren is at the first rehearsal tonight), we have some other things going on, and I knew I would eventually get around to cleaning up the garden.

All in good time, my little pretty, all in good time.

Earlier today, I went outside to dig up some butterfly weed roots for a friend. I had collected a bag of seeds for her, but I knew from our own experience that you can also just transplant the roots and get a stand started that way as well. Scattered between the brick patio and the butterfly weed were...tomatoes. 

When I took down the garden, I picked all the green tomatoes I could, which went into the relish:

Some of the haul from taking the gardens down 

But I did not get every single still green cherry tomato: some fell to the ground, some were hidden in the vines, whatever. And sitting outside these last several days, warmed by the sun, left alone by the squirrels and chipmunks, those green cherry tomatoes ripened.

Ripe tomatoes.

Oh my.

Before we left for the Emerald City on October 27, I had just (just!) finished the very last tomato from this year's gardens. I savored the last bite, knowing darn well it would be June at the earliest before I tasted fresh tomatoes again. 

But here they were: riches at my feet. You bet I carried them inside and washed them:

The very last tomatoes! 

I had a few on my salad this evening. I will have a few more tomorrow and the next day. And then I will say (for a sweet, second time) farewell to the tomatoes for the year. 

Sometimes you find unexpected riches when you are not looking for them. Sometimes, even on the toughest of days, you find treasure.

Today I found treasure.