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.