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From the Caring Bridge

Swimming

Dear Friends,

Yesterday we jumped in Lake Washington. Very refreshing!

Yes, we did meet with Rob’s oncologist, Dr. Richard Ancheta. Next Rob will update bloodwork and CT scans. Chemotherapy will likely start sometime in September after a second opinion at Fred Hutch.

For background and statistics, dig into “Rob’s Story” on his Caring Bridge site. Knowing the official odds are long and that none of us gets out of this alive, we are choosing to focus on Rob’s personal stats. Maybe you already know Rob has a great track record. For instance, most recently he was in that 20% with no complications after cystectomy. No wonder he is calm and steady, as usual. While the rest of us are stunned, bereft at times and still trying to figure out how we can schedule the future, he is playing the piano, watering his garden and tending the bees. Soon he will be running again, God willing.

We have learned that what helps most is

*when you bring us food.

*when we talk about something besides cancer.

We believe in nourishment, laughter, the science and miracles of modern medicine and the power of prayer and friendship. We delight in and welcome your individual version of that. Come join us in the Big Time. It’s quite the ride.

Love,

Penny

PS What is that coming out of Rob’s head in the photo?!

Inner Witness – July

Mandala

B.S. Before Surgery…After reading the following quote about an upcoming course at church, “Contemplate what it means to stand on the threshold with courage and attentiveness, listening for the next congruent step, and honor the threshold moments in your life as an integral part of the process of transformation and change,” I started recording my internal conversations. Someday, on the other side of Rob’s surgery, I imagine recording “Inner Witness Plus.”

Me:                        Are you there?

Inner Witness:    Always.

Me:                        Do you love me?

Inner Witness:    Always.

Me:                        Will you help me live here and now?

Inner Witness:    Always.

Me:                        Oh yeah, and eat less?

Inner Witness:    If we must.

Me:                        I do so want to be strong and healthy. Also to push away Fear.

Inner Witness:    Fear has nothing on me.

Me:                        Really? Then why do you allow it?

Inner Witness:    Not my doing, honey. If you live right here, right now, you might feel fright but not capital-F Fear. And only occasionally at that.

Me:                        What about on O-day?

Inner Witness:    Maybe. So 7/19 – Rob’s operation. Got it. On my calendar.

Me:                        [Pursing my lips to blow a kiss.]

Inner Witness:    You know, there’ll be a giant gang with you that day.

Me:                        Yep. I’ll try to remember.

Inner Witness:  And remember, it will help to breathe, feel the juice shiver through you.

Me.                        Ok, we’ll see.

Inner Witness:    I will hold you. All the legions will too.

Me:                        You mean the living and the dead?

Inner Witness:   Of course, sugar. You can reach out and feel the net we make.

Me:                        Thank God for that.

(Artwork by Penelope Jackson)

Sharing Grandma

Map

What to do when your 91-year-old mother has been hacked? At least that’s what I thought had happened when she popped up as a new Instagram user. Given my full-to-over-flowing plate at the moment, I did what I could. I ignored it.

But apparently my daughter Carolina started checking around. This is evidence of our team approach with Grandma. She’s described as “living independently” in a retirement high-rise where two daily meals in the dining hall as well as light housekeeping are included. We, on her local support team, know otherwise. Back-up checking and more help is recommended.

According to Carolina, Grandma couldn’t remember the details of how Instagram started…which is concerning. Still, I am choosing to find the bright side. After all, what would you do if your brother-in-law from Spokane was in town for six weeks for an experimental protocol to address pancreatic cancer AND your husband awaits major surgery on Friday for bladder cancer? Of course, you’d ignore the “hacking” or better yet, try to smile and Shore. Up. The. Team.

The other day I stopped by Mom’s and realized my son Clarke had visited her recently. He had posted a map of Seattle and had marked our addresses to help orient his grandmother. She told me he had played jazz tunes on her keyboard and brought along ice cream—chocolate and raspberry—for them to enjoy together. Perfect memory—hoorah!

Later Carolina reported in that nephew Elliot (Rob’s brother’s son) had been the guess-who guest and Instagram negotiator. He’d given Mom rides home from family events in the past so knew where to drop by. Unlike me (after all, I like collecting field-dependent good-girl points), he didn’t feel the need to brag about this good deed. Actually he enjoyed visiting his local grandma and has no sense of obligation. The vibes are mutual—Mom appreciated the visit and so did he.

As the plot thickens on my side of the street, I imagine it will be harder for me to see Mom as often as we’d both like. I hope the kids continue to visit and other friends and family call her. Fortunately she’s loved at her home and included by her buddies for card games every evening. But she says that contact “from the outside” is also life-giving and fun for her. Please let me know when/if you visit because it ends up creating a “two-fer” in that I feel almost as good knowing about the visits as she does experiencing them. Welcome to the team!

 

Learning to Follow

Dance

Two years ago Rob asked me to sit down because he had a suggestion…oo, ominous.

“So, do you want to take dance lessons?” he asked.

I was thrilled. I’d begged him for this early in our marriage and he’d finally decided it was time. He was part of the committee to plan AMICA’s (Automated Musical Instruments Collectors’ Association) convention in July 2019 and he wanted to be ready to cut a rug in style with me. Off to swing lessons we went. It was like therapy in a way.

The biggest joint task of lessons is learning to lead or follow. Most of our 40 years together, we had played to our personality temperaments: I am extroverted, outspoken and bold while he tends to be humble, observant and reserved. Most of the time this has made us a great team, just as several of our other differing interests and skills have. But when dancing? Not so much. One person, usually the man, leads and one, in our case, the woman, is supposed to follow. In our gendered culture, we never considered flipping—designating woman as The Lead and man as The Follow. Now that’s a wild consideration but not where this post is going.

Instead over the two years of convention planning, retired Rob has had time and energy to sink his teeth into several new activities, like dance lessons, and the new ways of being they’ve required. For instance, about a year ago he was asked to serve as vice president of our local AMICA chapter. Agreeing to give it a go was a challenge for my anxious fellow. And since I was finishing my working years, including traveling, it was clear that I couldn’t help much. Music, and especially machines, are more his thing anyway. He was off and running, leading as he saw fit with me following along as support.

So here we are now, post-convention. Home from an outstanding week of “vacationing in Tukwila” (the locals understand the humor here). What an extraordinary time we had! Rob and I were bus captains throughout the week. The popular initial tour—the one Rob planned and orchestrated—sold out. I resisted speaking on the microphone and instead enjoyed listening to him rattle on (who knew?) Greeting the guests (and putting a bug in his ear on occasion) was fine with me. Talk about good teamwork.

Much of the convention happenings were remarkable and deserve comment. For one example, pianist Morten Gunnar Larsen from Norway, who specializes in early American jazz and ragtime, was my favorite guest artist. Getting to know the others from around the country and beyond was very special too—lots of rich stories and graciousness. As we prepare for Rob’s surgery, it was splendid to be surrounded by lively, joyous tunes and to be shored up by the well wishes of many.

The long-awaited final banquet, an evening of fine dining and dancing—not our usual date by any means—was spectacular. We always welcome live music in every form so the Cornucopia Concert Band fit the bill. However we were expecting more swing and ragtime rather than the majority being marches and waltzes. My man can keep a beat though and adapted. And—surprise, surprise—I followed.

From now on, whenever we want a giggle, we’ll conjure up fond memories with this video: Yours truly goes dancing, er, marching (see halfway through clip). I was tickled to be asked, first to lessons and then to the big dance floor. Remembering the occasion warms me from my swinging head to my tapping toes. I’m happy to follow his lead when indicated.

Like Warm Wine

Marrow

On May 24th, we learned that Rob has bladder cancer. Ohmygod, do I ever wish we could just fricking ignore that damn diagnosis. After all, they scraped away lots of the derelict cells in order to complete the pathology report, so now three weeks later, Rob feels well again. He’s jogging and planting flowers. Last night we overheard a little girl exclaim as she walked by our house, “This house gardens good. I like it. It’s beautiful!” Me too. I especially like the gardener himself. He’s flat-gorgeous and he seems well here-and-now. What a nice honeymoon stretch for us. Why can’t we simply continue loving each other this way?

Because we know better. He has precariously-situated high-grade tumors in his bladder. They have at least penetrated the second layer, the lamina propria. When one hears “mucosa” associated with their bladder cancer—after hours of research at least—they heave a sigh of relief. We certainly have. There’s no firm indication that the cancer has reached the muscular layer. And there are no “mets” (shorthand for metastases, who knew?) that we know of. But the possibility looms…

Back. Away. Fear!

You do not belong here. It’s time to get after this c-devil! Enough research, for heaven’s sake. Rob has decided. Thank God. I agree whole-heartedly. Thank God.

But first the steps: Besides the research, it’s been helpful to talk directly with others and their loved ones who have survived bladder cancer. Their candor is a gift beyond description. Then we met with another urologist for a second opinion.

While Rob is the scientist between us and has learned bucket loads about our urinary tracks in a few short weeks, Intuitive Me has watched for confirmation. When Rob met (spoiler alert) his surgeon—the experienced doctor who performs one percent of bladder surgeries in the US each year,–one of the first things he said to me after the appointment was, “Dan would like that guy.” Ok, this is a longer story, suffice it to say (whether Rob would admit it or not), he goes to older brother/cardiac surgeon/dead-almost-30-years-now Dan, for advice. For me this statement is right up there with, “Hey, I plan to live 20 more years, like my parents did. Seems like this is the best way to do that with the least amount of overall pain.”

But I digress…

My Brave Rob Reid has decided to have his bladder removed. Another confirmation of this decision came when I was waiting impatiently, but bless-pat silently for a change, on the porch while he was inside wading through a long series of phone calls to schedule the operation. He broke into my wild reverie with two words, “July 19th,” and I felt a wash, like warm wine, flood my body. This would be O-Day for us. The operation is scheduled. Even now, it is hard for me to imagine women who suffer through their husbands’ heart attacks with no warning, then wait through a day-long operation before settling back into life with their repaired half. THAT really takes my breath away! I feel phenomenally grateful that we have this time to prepare, especially while he feels relatively well.

People have asked, “Really, they can take out his bladder, give him a new one and he’ll be ‘good-to-go’ so to speak?” (Ar, ar, ar)

Here’s my current answer to that: “Yes, you can live without your bladder. Check out the internet where you’ll find all the options. Personally, I think your question is a bit like asking a woman flat out if she’s had a hysterectomy or a man if he’s circumcised or not. Or maybe like asking them to explain their particular bathroom habits.”

You can ask Rob for those details if you really want to know. He’s more analytical about the whole thing anyway and ready to explain until your eyes glaze over.

Basically, he’s choosing the best way to save his life rather than only his bladder. Whether his gladder bladder is inside or outside, made of his small intestines or of plastic, connected to the outside through his penis or a rosette (how’s that nickname for a stoma?; that would tempt a gardener, I bet….a religious person like me too) near his belly button.

We’re talking Life here, people. Does it really matter what the final apparatus is after suffering through eight hours of major surgery, seven days in the hospital (Overlake for local readers) plus six weeks of recovery at home?

Hey, he even has a good chance to duck classic cancer chemotherapy this way. And run again every other day for many years, like he’s done for the forty years I’ve known him. After all, this is one cancer the medical community calls “curative” (whatever that means…looks like we’ll find out).

So that’s how Mister Courageous (with his Chief Caregiver) is choosing to face this hiccup…ok ok, we’ll give this one major burp status. What they call “aggressive” cancer deserves what they call a “radical” cystectomy.

Stand back.

Aggressive, meet Radical.

Here we come!