This Bus was so hopeful….how hopeful was it?

Hosts of Match Game/Hollywood Squares, 80s style!


Dear passengers of the BOH,

It is the time of day that many people, especially parents, might call “me-time.” It is the time for me to (try to) relax, grade, prep, or indulge in something delightful. During the day, I am unable to find long swaths of time that are my own.

Right now, as I write this, my guilty pleasure is Match Game/Hollywood Squares Hour.  Gene Rayburn hosts the first part. It is a dose of nostalgia, looking at all the fashions and hairstyles of the early 80s! But when John Bauman takes over for the Hollywood Squares part, I can’t help but to think of my dad. Both men possess a kind, silly, and charming personality. Their smiles often inspire others to follow suit.

So, let’s review the week. What would you like? A, more about Rachel? Or B, more about Jim? Let’s start with Jim. This week, he met with both his therapists, speech and PT. Did I tell you that Allina provides in-home care for their patients before heading to outpatient therapy? Well, they do, and what a godsend.

Amy is the PT, and she is terrific. She is a positive person, always taking stock of Jim’s energy levels and general mood. Last week, Jim really was out of it. In fact, Amy left after 15 minutes as she could see Jim was way too fatigued to participate.

I stood outside, but stayed on the wheelchair ramp, watching them walk. Even with the cane, it looked like my Jim, just walking down the street. Sure, he was walking with deliberation, but he was also gesturing as he walked, which is a normal deal for him. When he got back, he felt good. Not winded. He had some nice color in his cheeks.

This week showed us a different dude. On Tuesday, after Amy took his vitals, she asked him to stand. She wrapped a belt around his waist, the very kind that we have used on Rachel far transfers. He grabbed his cane, a freebie from Mike Colestock, and the therapist and the patient went outside and took a walk. A walk. It had to be at least 500 yards one way, so that’s a football field for the

The next day, Jim had Wendy, the speech therapist. On her first visit here, she installed an app onto his phone that works on all kinds of language and comprehension drills. I am here to tell you that, when your brain has been scrambled by a brain injury, these exercises are hard. And for a guy like Jim, who loves to talk, this is especially tough.

But, as I have been saying, Rachel’s journey provides quite the model for what Jim is experiencing. Luckily, Rachel’s first speech person was Sue. Shortly after meeting her back in 2011, she told me that Rachel had more words inside, but couldn’t get them out. I was completely stunned that this was something knowable by anyone outside of Rachel herself.

I even entertained the thought that Sue could just take an otoscope, look inside her ear, and see all these words floating around her brain, looking for the on-ramp to her mouth. Of course, while that might be a cool image, I know better. But that same condition is now occupying a rich, informative mind belonging to Jim.

That means that, just like I do for Rachel, I have to repeat myself. A lot. For example, on Tuesday, when Rachel went back to school, (yay!) I had to repeat the setup several times to a nervous Jim.

“Okay, I am leaving at 7:05. I will wait until Turnar gets here, but then you guys have to get Rachel downstairs so she can board the bus. Remember this part?”

“What time are you leaving?”

I make sure to say the same time, even if it’s not totally gonna be accurate: “I leave at 7:05.”

Jim nodded his head, but he was nervous as heck. But lucky for all of us, Turnar showed up right around 7. We exchanged pleasantries, and then he helped us with the transfer from R’s wheelchair to the chairlift.

I stay around – the clock ticks quick to 7:10…

“Jim, don’t forget to stand behind the wheelchair. We don’t want it to tip over. Jim, stand behind the wheelchair.”

I watch the transfer, and then I announce my departure.

Happy to report that it worked. Rachel made it to school just fine. Jim did his little part by walking Rachel to the bus and assisting her onto the lift platform. Normally this is the stuff I do. With an early morning class, Jim has to step up. And he did it. May the pathways in his brain stick.

Now one thing I reported on was his falling. So far, his falls have not resulted in anything too dangerous. And we are lucky for that. But recently, Jim and I have quietly noted that he hasn’t fallen in at least four days in a row. It’s true. And the shakes have subsided. Still there, but a lot less.

He also is able to gauge his own health status and compare it to other days. And the better days, the ones with more energy, happiness, and purpose, seem to be slowly growing.

Another sign of his recovery is his ability to help. Like doing some dishes. Like starting some laundry. Like letting me sleep in and getting Rachel up on a Saturday or Sunday. We got here before the seizures hit. Perhaps we’re on a longer stretch of recovery.

Living in the present is one of the hardest things to do.

But let’s look back a little bit and tell you about Rachel’s week:
This year, I wanted to push Rachel a little bit. It is my belief that when she spends a little more time in mainstream classes, she has to work harder. In fact, not only does she have to, she wants to.

We talked with the team at school and then as a family. We kept her in special needs English, math, DAPE (adaptive phy Ed.) and social skills classes. But she is enrolled in biology, ASL, and theatre. She helped select the last two, and I think they are going to work.

Here are a few moments noted in the communication app (that bridges the school team and us as her family) that suggest hope:

On the first day, it was a lot of explanation of how things would work. One note suggested Rachel really loved finding out about routines. And her life since TBI is all about routine. She thrives on it, and apparently, she is seeking it at school. Heck, all she said toward the end of the summer is…WAIT FOR IT…. I’m BORED.

On another day, during ASL, she demonstrated that she could sign her name by the end of the day. WOWZA.

In her theatre class, she was in an ice breaker moment, and she reported that she would like to go to college someday. (!) In the same class on a different day, she decided the theatre teacher is cool, and she was enjoying the other icebreakers they did.

Finally, in her biology class, the teacher asked the class for the definition of “hypothesis.” The notes are very explicit in saying that Rachel independently raised her hand and offered the definition as “an idea.”

So, in a nutshell, that’s how my gentle giants are doing.

Me? Well, I’m enjoying my students, both online and in-person. For the students on campus, I have mastered all of their names. Pretty proud of that. And I’m always learning how to do things online a little better. I force myself to be brave, knowing I might fail but I’ll learn how to do an important teaching move online. Proud of that too.

I’m also working with the union, known as MSCF (Minnesota State College Faculty). I took on the membership chair, and I’m far from getting my arms around it. But here again, I’m still understanding how unions work, what kind of forces are at play during mediation, and how important it is that all faculty need to support each other.

That’s got to hold you for now. But before I close, I will include a link to a GoFundMe that Jennifer Castino put together in our honor. Click here to read our story. Share the link with others, too. Thank you, Jen!

More to come in a few days.

Melissa
P.S. I will send out more info on the fundraiser that Emily Anttila and Emily Colestock are putting together in the next 48 hours. If you are on Facebook, it will be posted as an event.

Go slow and then grow

Miss Rachel with her new glasses, age 15, a sophomore at Mound Westonka High School

Dear riders of the Bus of Hope,

Do you remember the summer of 2011? When Rachel went from being a child about to blossom and grow as she entered preschool to a disabled individual in a wheelchair? That was when we started learning all about the brain and its phenomenal ability to heal, reconnect, and reboot with the proper support system. That meant PT, OT, and speech.

While Rachel is not walking – yet – she has made slow and steady gains over the last 11 years. She has proven that the brain CAN rewire itself.

Case in point, and this is an anecdote I shared on Facebook recently:
We have had members of our extended family and friends come to the house and keep Jim and Rachel company as I return to work, teaching at Normandale. On Thursday, Midge Frailich came with donuts and a board game called Topple. Apparently, they had a wonderful time playing it. And as for the donuts, only a half donut survived the gnashing of hungry Reids….

Anyhow, after I got home and excused the help for the day – Grandma Kathy at this point – I sat down on the couch, tired from teaching.

Rachel raised her left hand and pointed at the corner of the couch. “Play a game?”

Yawning, I asked if she meant Yahtzee. Nope. She kept pointing and saying, “Play a game.”

I slid the game she requested off of Yahtzee and put it on her table. “Look, I will play, but I don’t know much about this game.”

[please be seated for the next line….]

“I will teach you.” Just like that. As if it were a normal conversation. And what a thing to say! Teaching your own mom something she doesn’t know.

I can remember when this flipped-script moment happened for me.

When I was in 5th or 6th grade, I took a calligraphy class at the Edina Art Center. I loved it. I still try to do some now and again. (When my schedule allows, I will do some lettering for the Greeting Card Ministry of Good Shepherd.)

But what I remember is my mom talking to me as she marveled at my efforts. “This is so fascinating, Melissa. This is something I know nothing about. I don’t know how to do this. But you do.”

My tiny mind split open wide at the thought of knowing and learning about something my mom didn’t know much about. And now my daughter is closing the circle, offering to teach me about a board game she just played that day. Talk about a mic-drop moment!

Jim’s health situation now mirrors that of Rachel’s: his illness took him from a place of strength, working at Costco as a night-time merch/stocker, doing woodworking on the side, and a nearly full-time chef for his family to now: a man who has started speech and physical therapy. A person who has basically earned the label “falls risk.” A person who has lost an appetite and needs to force himself to eat. A person whose candle has dimmed and nearly flickered out.

Just like Rachel in 2011. That was scary for me and many of you. But moments of hope did exist in all that darkness.

Do you remember the stinky socks story? When we were living at Gillette, at the very beginning, I was interacting with Rachel, trying to get her to smile. Right after the strokes, she had this dull, blank stare. One day, I picked up socks out of the laundry Jim had just brought into our hospital room. I looked at Rachel, pulled the socks up to my nose and took a big sniff.

“Oh man, Rachel! This sock is P.U.! Ugh! Yuck.” I waved my hand back and forth, as if fanning away the stench from my nose.

The next thing I knew, her little body started to shake. It was almost as if she were coughing, but what she was doing was laughing! She remembered that joke from before her strokes. Such recognition of humor was a sign that her higher brain function was working. Her doctors and nurses cried tears of joy when Rachel laughed at stinky socks.

Tonight, as I was channel surfing, I found the old Batman and Robin television show on MeTV.

“Batman?”

“Yes!”

Rachel paused a bit, looking at the screen. “Robert?

“No, his name is Robin…” And then I went into a deep, quiet belly laugh. Jim had already retired, so I could not blast into my normal old-lady cackle. Rachel giggled with me, and we had a well-needed moment of levity.

Currently, Jim is receiving homecare from the team at Abbott. He has had sessions of PT and speech. Rachel and I sit to the side and watch Jim do similar things that Rachel has done.

“Okay Jim, I need you to cross your arms across your chest and stand as many times as you can in one minute,” said the physical therapist doing the initial assessment. Rachel has done a lot of “sit-to-stands,” as we call them. She needs assistance while doing them. And now, it’s Jim’s turn, apparently. He was able to do seven of them, un-assisted. It was impressive to all of us watching!

“Here is an app that I’m going to download to your phone, Jim. It is free for the first two weeks. I will have the updates on your progress go to me and your wife,” said Wendy, our speech therapist who is now back from vacationing in Hawaii. She will be our mainstay therapist. She is filled with smiles and savage tough-love. (Like someone else you all know….)

“I am struggling with some of these exercises you gave me,” said a frustrated Jim.

“Can you do some of it? Sound it out?

“I can’t do it at all.”

Such frustration happened early and often for Rachel in the beginning. Except she couldn’t tell us she was struggling.

Instead of talking, she made a clucking sound, or she would blow a raspberry. How far she has come.

Will Jim make the same gains? Will he have the time to make said gains?

He has had moments of fluency when speaking. This morning, he could say that he wanted my help in paying a few bills. But then he struggled to ask for the remote an hour later…

“Where are my clothes I wore yesterday? I want to change the channel.”

“Oh, I see. Here’s the remote.”

I have a video from years ago of Rachel saying “Wa-wa” for the word “water.” Now she can say “Can I have water please?”

See what I’m getting at? Rachel’s journey is now Jim’s. Whodathunkit?

Jim was released from the hospital after a six-day stay in mid-August. He experienced medium-sized seizures while there. The team worked hard to find the right dose and mix of medication to keep the seizures at bay and the potential flares from firing.

His trip to the hospital in August was a setback. No doubt about it.

But this has not changed his diagnosis nor his prognosis.

When Jim did his follow up meeting with Patti, the oncologist nurse, he wanted her to tell him when he was going to die. Her answer?

“I don’t know, Jim.” She reminded him that all they have are statistics and probabilities. Some folks outlive the number of years they suggest.

This brings me to the philosophical: How do you live in the present, and how do we maintain gratitude for what you get in that 24 hour period? Will we pass this test? Will we master this conundrum?

Can you shrug for me? Can you get your shoulders up by your earlobes, arch your eyebrows nice and high, and get your elbows out and palms upwards, as you say “I DON’T KNOW!”

Thanks. Neither do I.

What I do know is that Jim experiences weakness in the legs and knees and sometimes falls. I also know that he still maintains his stubborn streak, very rarely using his walker. Finally, I put out a call on FaceTime’s Buy Nothing page for a cane, preferably a wooden one. I figure he might try a cane, especially if it is a wooden one.

Emily Colestock happened to be at our house this afternoon when I shared about a cane from a Mound neighbor. It turns out she knows him from church. She offered to go get the cane and dig out one her husband Mike used post-surgery. This one notches up a bit more on the cool scale as it has an eagle etched on the handle. So now we have two canes.

“OK, your shakiness and falls seem to happen more in the morning and evening. You need to use that cane always in the morning and always in the evening. Got it?”

He complied. And it seemed to work. When he wanted to put together his taco for dinner, I still needed to help him as the shakes came back again.

And that’s another lesson: we humans are so capable of adapting and changing. Even when it’s scary and frightful. When Rachel was in the hospital, Jim and I lived there. It was somehow our home. And now, when Jim shakes and/or falls, it doesn’t even faze me. I am already used to it.

That’s crazy, isn’t it?

I also know that Jim is getting better, but in small steps. (Just like Rachel!) Each day, the light comes back in his eyes. There’s more pep in his step. I also witnessed him doing his speech homework on his phone. I also know that the fight to live is starting to grow. Slowly.

I worry about the falls and the lack of appetite. But we are in the beginning of our next journey, so I must let hope, faith, and the hard work we do take root.

Count me in as ready for Rachel to go back to school! She is READY. She has sporty, new glasses that have a fabulous red trim. She says she misses all her friends. And she tells me that being home is soooooooooooooo boring.

It is now about 1:30 a.m. I should close. But let me highlight a date for you: October 1, 2022. Some of our close friends – Emily Anttila and Emily Colestock – are spearheading a fundraiser at the Legion here in Mound. Doors open at 5. My brother, Chris Castino, has generously committed to providing the entertainment that night. Do you like sloppy joes? Well you’re in luck, because it’s on the menu! So are a bevy of homestyle desserts! Plus a silent auction and a raffle! (One of the raffle items is quite popular at the Legion, and it’s called the “barrel of liquor.” A large container is filled with bottles of liquor. Patrons can purchase raffle tickets to win the lot of liquor.

You are cordially invited. But if you cannot come, the team is putting together a GoFundMe page for us. When the details are ready, I will share it on my Facebook page and blog.

And if you have any donations for the silent auction or booze to part with, let us know.

Emily Anttila is the main contact for the fundraiser. Her email is emilyanttila@gmail.com

Her phone number is 651-353-2105.

OK, that’s all I got for now. Keep leaning in. This is a long haul. But this is also the work of hope. All hands on your own steering wheels, at 10 and 2.

Rolling…
Melissa

Another roundabout for the BOH…

Tags

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Debate rages on RACQ roundabout road rule quiz over who needs to give way
How the f@ck do I drive in a roundabout?

Dear Hopers,
Was not expecting to return to my inkwell of a blotter so soon, but I’ve always argued that I hav a duty to let you know what’s happening, no matter what.

This week has been busy with appointments for Rachel, late nights of grading, and trying to sneak in sleep. Today, I was feeling tremendous relief as I had submitted my grades about a half hour before the deadline. Jim woke me up at 5, I walked on my treadmill, and then after the rewarding cups of coffee, got Rachel ready for her early morning pair of therapy sessions.

I am still the sole driver, as Jim has not been cleared to drive. But for the last few weeks, he’s been the muscle, getting Rachel in and out of the car.

So, we hustle up to Maple Grove, and Rachel heads into her speech session. I reach for my book and coffee, and Jim confesses he feels like he’s going to throw up.

It was my clue that this was not likely going to be an ordinary day.

By the end of the speech appointment, Jim decided to sit out in the car while I brought Rachel to her OT session.

After we were done with Gillette, Jim got Rachel safely in the car, and we all headed back home. Jim went straight to bed for a 3-hour nap upon our return.

By 3:00, I walked into our bedroom, only to discover Jim, on his back, awake and complaining of a raging headache. In speaking with Jim that afternoon, his aphasia began to show, like a mismatched outfit. He started dropping words and starting sentences, leaving them in midair.

Once he took aspirin and slammed down a bottle of water, we all had a chat in “the circle.”

“Well, how about I call Abbott, see if I can get a triage nurse on the line?”

“Just hold o-…I just…headache going away…I want…”

“Stop, Jim. Tell you what: I’m going to turn down the television, and we’re all going to not say a word for five minutes. OK? Rachel, this means you too.”

I started the timer with a glance at my Iwatch. I took some deep breaths. Rachel turned down her Ipad, but kept quiet. Jim tried to be comfortable in his chair.

After the five minutes was up, Jim’s attempts to speak seemed to worsen, and his right hand could not hold his phone or pieces of paper. I called Abbott’s Givens Cancer Center and spoke to a nurse. Once I described the symptoms, the nurse greenlit my way to ER.

What is this, my fourth or fifth time calling 9-1-1? This is a record I didn’t want….

By 4 p.m., Rachel and I sat on the wheelchair ramp, watching Jim explain as best he could what was happening to the cops. Shortly after 4, the EMTs loaded our Jim into the ambulance and drove off to Abbott.

(quick aside: Rachel noticed two of the EMTs were women and was properly impressed by this. I am glad she “saw” that.)

Rachel and I just sat outside, shedding a few tears.

As her emotions returned to a calmer state, she muttered something under her breath.

“Rachel, what was that? Say that again?”

“Shitty! Shitty!”

“You’re right: this is shitty. No doubt about it. What should we do tonight?”

She asked for pizza and a movie. We made the best of the night.

I did put in one call to the on-call ER nurse. They did a PET/CATSCAN -sorry, I don’t remember which! -and found nothing remarkable. He is as comfortable as can be. His right hand and aphasia are still present, and those likely are still causing stress and frustration. But the nurse reported to me that he has been pleasant to be around otherwise.

I THINK that if it were bad news, we’d know about it by now.

By 9, Rachel asked me to put her to bed. She requested a book, so we took turns reading Mo Willems’ Let’s Go for a Drive! Oh what fun that one is!

She is now in bed, sound asleep. When she asked me if I was going to bed, I said that I might stay up a little. I promised her I wouldn’t drink a bunch of beer and stay up too late. She giggled but looked relieved.

Please pray that Jim is home soon and can get out of this roundabout. I mean, really, I’m supposed to be relaxing after putting the summer semester to bed! I guess I have to wait a bit longer.

Now accepting your extra credit love, hope, prayers, and jazzy vibes of good.
Love, Melissa

“Who needs plans when you have a pig for a pal?”

Endurance

Endurance

Dear BOH,

In my 52 years of living, my body has sustained a great deal. Ear infections and chicken pox as a kid. A torn ACL during my uninsured years in Bemidji. The surgery to re-attach it years later. The physical therapist who helped me post-surgery called me a miracle case, given my speed of recovery. What else have I endured? Childbirth. Severe lows as a diabetic. The occasional hangover.

Early this year, I added plantar fasciitis to this list. For you lucky ambulatory folks, this condition is described in the Merriam Webster dictionary as, “inflammation of the dense fibrous band of tissue of the sole of the foot that is marked especially by heel or arch pain.” So. Much. Fun.

It has taken me 7 long months to pull through, reaching the flip side, almost pain free. In month six, I purchased Voltaren pain cream and the CopperFit arch support splints, and this winning combo finally put plantar fasciitis behind me. I still get the occasional zing of pain, but I’m way better.

But look at Rachel: she has survived countless surgeries, procedures, and in a pandemic world, COVID tests before everything that required anesthesia. Such a trooper.

This summer, with Jim’s health condition and recovery top of mind, Rachel’s therapies took second fiddle. As her parents, we didn’t like having to frame it that way. The hope is that we’ve made the right choices all throughout the summer.

Oh! Yeah… The summer. I haven’t been in touch much, have I? I’m sorry.
So, what have we been up to, you ask? Let’s look at some of the highlights:

1.   Lassoing drivers to radiation: Jim’s schedule for this treatment ran from Monday through Friday, and it started in early June. Aside a half a dozen times when I drove, people from the BOH helped us get Jim from home to Abbott and back. And if I did drive, volunteers stepped up and kept Rachel company.

2.   Haircuts on deck: Before Jim’s illness, Rachel’s long hair had become an imitation of a sheepdog. I kept trying to find the time to connect with Rebecca, our fabulous Great Clips hairstylist who has been a BOH rider for years now. She has been shifting her work between two different locations, and her schedule never quite aligned with ours. (Remember too, I can’t lift Rachel and place her into my van, so I needed Jim’s help. And he was under lift restrictions immediately after surgery…) By the time June rolled around, I was desperate: even when Rachel’s hair was clean, it looked awful.
I put out a call on Facebook: does anyone know a hairstylist who makes house calls?

Through my friend Jill Borg, a Good Shepherd member and Shirley Hills teacher, I found Trish. She has a salon in Excelsior, and on a bright, warm Thursday afternoon, she cut Rachel’s hair on our deck. She refused any money. I suggested I would schedule a cut with her as a means of returning the favor. She told me she was booked through September; within 20 minutes, I got a fresh cut too. That day in particular, I felt so lifted and loved. Goosebumps spread across my arms. I was almost dizzy. A beautiful moment all around. Do me a favor: look up Trish the next time you’re in the Excelsior area. Tell her I sent you!

3.   A set back: On June 17, Jim had a mini-seizure on the way to Abbott. For the weeks prior, Jim had been responding well to treatment. He was acclimating to his realities and the relative unknowns. We were all falling into a rhythm, finding our places and spaces.

But on that Friday, this seizure felt like a seismic shift backward. I was at Rachel’s pool therapy with Andrew Colestock, one of her classmates and a strong enough guy to do the transfers. Just as Rachel started her session, a bone-rattling texting conversation started with Haven, that day’s driver:
 
– At Abbot. Something is happening. Stroke? Getting him checked at Emergency. Not dire. But definitely different.
      ???????!!!!!!!   Oh my. Can he walk? Talk?

One minute
K Shit

Can walk but I put him in Wheelchair. He’s sweating. Language is very garbled.
Fuck. Not good at all. Keep me posted I’m sorry to dump this moment in your lap. Did it come on suddenly?

Yes, at beginning of drive. Couldn’t complete a thought.  I thought it was chemo but it seemed excessive.

Right.

Right hand was only half working. He’s imagining holding things that aren’t there in his right hand.

That’s how the texting convo started with Haven, and it carried on for the next six hours. Jim wound up staying the night. It turned out that the radiation caused swelling to return, just as it had for the surgery itself. They put him back on a steroid to bring the swelling back down.  While it could have been so much worse, it still felt like another gut-punch.
  
That weekend should have been a celebratory weekend of Father’s Day and Grandma Kathy’s birthday. Instead, it was a dark one: Jim’s mood was foul: impatience, anger, and depression swirled around us that weekend. I wanted to be anywhere but there.

4.  Starting over: Come Monday, the established routine of radiation started again. Muriel Thompson, a wonderful person I met through the U of M’s Writing Project, was our usual Monday driver. But we gave her the day off and I took him into Abbott while Rachel stayed home with Grandma Kathy.

The oncologist confirmed that Jim had experienced a mini-seizure. He also offered an optimistic view that Jim would recover once again from this just as he had from surgery. That oncologist was right: he has bounced back from that setback. My, what a dark time that was, though.

5.   Two weekends later, Dylan and Ali hosted us over for a classic cookout. Seth and his two kids joined us. That day, I watched Jim’s spirit shift from the shadows to sunlight. We spent several hours together, talking, laughing, eating, and enjoying a day of gorgeous weather. I took several pictures of their property, as if I were a tourist in a new town. It did feel like a mini-escape. And that night, Jim said aloud, “It’s been a good day. I enjoyed myself.”

6.   Dizzy: Throughout this experience, Jim has had dizziness and unsteadiness. It is improving as of late. It started in June. In fact, he was so shaky, he fell in the kitchen. Luckily, I was with him, and I sort of guided his fall, avoiding anything worse than falling hard on his bum. It seems to happen after he gets up off his chair and starts walking to the kitchen. Rachel often is the one to discover him clutching the counter, trying to steady himself. She lets me know with a quiet but urgent “mom, mom…” I have learned the hard way to strike a balance: I can’t hover, and I can’t say much. I tend to stand up, take a brief glance, and then announce to Rachel, “He’ll ask for help if he needs it.” I will walk around, looking for something to do, avoiding the stare. In moments, he’s just fine and off to fixing himself something to eat. We don’t know how long this will be a part of his life, but these episodes seem to be diminishing.

7.   ESY – Extended School Year: Speaking of Rachel, she had the opportunity to go to summer school at Mound-Westonka High School. What a godsend that was for ALL of us. The three-week program ran from Monday to Thursday, from 8-11:30. She was rocking the entire experience. From the communication app that tracks her progress, it sounds like she was leading her peers, reading like a champ, and grasping math problems with greater ease than usual.

They made tye-dye tee shirts and took pictures of the class in them. I made my usual gift of thanks: stove-popped popcorn for everyone. (It took 8 rounds to make 22 lunch bags worth of the tasty treat.)

Seriously, I really needed that break. For at least an hour or two, I got the house to myself. I drank coffee and sat on my deck, I watched my plants grow, and I witnessed the birds flitting from feeder to feeder. Peace delivered directly into my spirit.

8.   Bill Grivna: Like many families, we have friends who become part of your own, often referred to as extended family, right? I bet I’m not the only one who has crowned a person “auntie” or “uncle” given their loving presence.

So, it is with Uncle Bill, or Griv, a man whom I’ve known my whole life. He was my father’s roommate in the late 60’s here in the Twin Cities. Dad was a Chicagoland transplant, and the two men became fast friends as they navigated theatre and performing gigs.

He put his addictions to bed and went back to school and attained an MFA in Theater and Acting. For his full career, he was a professor to thousands of students, helping them achieve their dreams and goals in performance.

He was always fond of Chris and me, as he never had kids of his own. But once he got wind of my choice to become a teacher, we drew closer. In anticipation of seeing him post-pandemic, I was delivered yet another gut-punch: He died of a heart attack in July at the age of 79. Tributes keep pouring in, highlighting his vibrant passion and energy for theatre, teaching, Tai Chi, and his terrific wife, RoseMarie.

The only consolation I have is the image of my dad and Bill, hunched over a dry martini, swapping stories and sprinkling their love into our lives from their front-row seats. Bill, thanks for showing up. Give my dad a bear hug.

9.   Let my tears rain down: Back in January, I discovered a work conference held in Boston in the second half of July. We were going to visit Kevin, Amie, and Mackie in Connecticut, and then we were going to drive up to Boston for the trip.

You know where I’m going with this, right?

I can take a lot of disappointment. Lots of dissatisfaction. But really, after a while, even I can’t take any more bad news and thwarted opportunity. One night, I saw a post of good friends out for dinner, and then I just lost it. The cumulative effect of sadness and heartbreak rose up in gut-wrenching sobs.

Yep, I had a pity party. I came clean with the rain of tears. A week later, I saw my therapist, and now I’m a bit better. But my pain is not erased, but rather a scar that needs maintenance. I’m still figuring out what ointment it needs, but the next bit of news is a big step in the right direction…

10. Wicked: Back in June, a behind-the-scenes effort began to “do something, anything.” What transpired was four tickets to the Broadway hit, Wicked. I will post pictures on my next update, but what a thrill this is! For the record, this is a gift arranged by the new Good Shepherd head pastor, Derek Tronsgaard. He had some earthly angels with funds to donate. Please tell those beautiful people THANK YOU!

11.  Speaking of the good, even in these tough times for my family, lots of people have donated so many meals, money, and the aforementioned Uber-miles to get Jim to radiation. Bridget Reigstad and her trusty partner mowed the lawn back in May. Jimmy Martin Jr mowed twice in June.

Grandma Kathy, along with our friends, Dee Noah and Cheryl Morrissey came to help while I went on a radiation run. Auntie Julie came over on a couple of times during a Saturday or Sunday so I could grade at Caribou.

Such generosity has left a deep impression on me. I’ve already visualized how I will pay this forward in the years to come. The bus of giving cannot rest here: that’s what the wheels are for….ever forward!

12. Radiation/Chemo – Full stop: Jim completed both chemo and radiation at the end of July. On his way out of Abbott, he was able to ring the bell for his last session in the radiation wing.

But now, he is experiencing what I call the after-effects of said treatment. The symptoms include fatigue, tension in the temples as if a headache is coming, near nausea, and absolutely no energy. A nurse practitioner from HealthPartners spoke with Jim a week or so ago, and she said that this condition will get worse before it gets better. So, we wait and offer patience to the moment.

When Jim and I talk about the future, we are honest about it. We know that his expiration date has been re-stamped on his carton of life. But nobody knows what that date is. It’s a hell of a conundrum and calculation: how much are we realistic? How much hope can shine into this future?

Here’s what we do know: On August 17, Jim will have an MRI done. He will meet with his team and determine how much healing has or has not happened. The better the MRI, the longer his life ought to be. We’ll see. Lean in, BOH.

So, that’s where we are. I’m very sorry that I didn’t get back to you sooner. I’m sorry if I’ve been AWOL. I have a lot on my plate. I hope you can forgive me for the lack of communication.

For now, we are making our way through August, with a bead on Fall semester (8.22), the start of 10th grade (9.6), and perhaps a return to Costco as a part-time employee. We now are getting Rachel to her therapies as best we can. We do our best to keep boredom at bay.

While I have endured much, the one thing I’ve noticed is that I have not had a nervous breakdown. Did you know that one out of 4 of us will experience such a thing? Thanks to His love and yours too, I’m not checking in to a padded room.

As the song goes, “I’m still here.” In fact, we all are.

I am feeling grateful for so much. My cup runneth over!
As I said, lean in, BOH. And thanks.

Melissa

Checkpoints and checkmate

Checkmate, Patti.

Evening,
The trees in Denny and Margo’s yard, (neighbors), have greened up good. The fading light of the sunset sparkles and shines like gold through the leaves and branches. I have watched the seasons turn 52 times, yet it is a magic trick that still marvels. It never gets old.

What’s still new is navigating the trip to Abbott. Google Maps can offer a dozen ways there and back. Today, I think we figured out that we should always park in the main lot. We should always choose to get back on highway 94 soon when we head home, and we should get coffee with double espresso once there so we don’t miss any important details.

We got there at 9:30, and as the Patient checked in, the two nurse practitioners who are with the clinical trials greeted and guided us from checkpoint to checkpoint. We have met them before, and they are kind, knowledgeable, and professional without being dull. I have forgotten their names, but I’ll call them Kari and Katie. One is blonde, broad-shouldered, and loves to get the meat of her bat on a softball. The other one is a brunette, bold, and the one who directs and drives the moment. (I promise to master their names and correct this in future posts.)

Once Jim gets his bearings, he turns on the charm and lightens the mood of us all. Awfully brave of him, isn’t it?

The team checks Jim’s vitals, blood pressure, and administers a blood draw. In between these pitstops, CVS Pharmacy calls me to confirm that they will send it the chemo in pill form to a store near us. Our target start date for chemo and radiation – done simultaneously – is June 9.

Finally, we are back to the Givens Brain Tumor Center waiting area. Our wheels are still spinning even as we sit. Those hallways are labyrinthine and nonsensical to us. An irrational fear comes over me: if we master our routes here, does that signal defeat or mere efficiency?

As I rub my eyes, hoping to make the fears evaporate, I notice the clientele in the waiting area. At least three couples go in to their appointments before us. All three are at least 10-15 years older than we are. One gentleman walks as if every other bone in his body is broken, and his wife repeats snippets of our conversation. All move slowly, but with plenty of purpose: a spouse, grandkids, retirement, their dance card of living.

Finally, we are able to see the head nurse at Givens Brain Tumor Center, Patricia Bruns. Patti to the rest of us. She is the one who dropped the bomb on us on the day after surgery. You know, the one about a cancerous brain tumor and lifespan bell curves? Yeah, HER.  

I was waiting for more bad news as we were ushered into this small examination room. Kari and Katie sit at a small table up against the wall, Patti sits on a wheeled stool in front of the desk and her computer, and Jim and I sit on the other side. A tight space with 5 people in it.

OK, Patti, I’m ready for you and your truth bombs.

Patti is in her late sixties, I would guess. She has a pleasantly plump pear figure that she Lizzos with grace, warmth, and confidence. She does her work within close proximity with her patient. So it was with Jim.

She was in a good mood, but maybe feeling like she needed to speed things up a touch, as if she were a little behind. Each gesture had spark, confidence, and dramatic purpose. But Jim and I had lots of questions, and we wanted details in a clear, decisive manner. Each of our questions tapped her brakes with care. We didn’t want to collide with any more disaster.

“OK, I need to check your blood pressure.” (It was excellent.) “How are you doing, Jim?”

“Today, I feel great. I feel normal.”

“Good, good!” Patti types into her laptop, smiling to herself.

She wouldn’t smile that much if it were bad news, right? I mean, I saw that smile, Patti.

“Okay, I need to examine you further. I going to hold down your knees, and I want you to push against my hands.” (She leans down hard on his knees, and Jim pushes back with power: she makes a WOW sound with her voice. More smiles.)

“Very good, very good!” More clickety clack into the laptop. “OK, same principle with your arms. I’ll hold them down, and you push up.” Jim does the same thing with the same kind of power. The WOW sound almost resembles a pleasant purr from a cat.

“Marvelous. OK, now I need to see your scar. Take off your hat.” Jim removes said Bo Sox cap and leaned forward. “Wow, you really heal well. Verrrry well.”

“I’m told I heal well.”

At this point, I can’t remain silent, so I pull out one of those lines I use to fish for hope: “Do all patients in your view, heal this well? Or is Jim the exception in your experience?”

“He is doing very well. His skin is healthy and smooth. Many patients have scalps that are peeling, dry, and possibly seeping with blood. I see none of that with his scar. Remarkable.”

She sits back down and takes more notes. She listens to Jim’s breathing carefully as she moves the stethoscope skillfully across his chest and back. She pats him gently on the shoulder after she’s done.

She wraps up her examination of the Patient. “You’re in good shape. I’m pleased.” As she says this, she smiles and reaches for Jim’s hand, giving it a loving but brief squeeze.

Jim and I ask questions about timelines and restrictions. No driving nor lifting for the duration of chemo and radiation, which means about six weeks.

This means I need lots of backup help with lots of stuff. It’s a good thing I started a schedule for support.

We talk about life spans again. She reminds us that these are all stats and numbers. She echoes that idea I’ve heard so often: every “body” is different. Everyone lands on the bell curve on a different spot. Some are to the right, others in the middle, and others to the left. She has survivors who are 10, 18, and 25 years out from original diagnosis.

I’d like to take a sledgehammer to that fucking bell curve. Jim is gonna land years to the right.

Finally, I suggest, as gently as I can, that the oncologist suggested that remission was possible. She claimed that she doesn’t use that word. She uses “longtime brain tumor survivor.”

I take a deep breath. I relent and accept her words as possible. And that’s good.

As we wrap up, I sneak in a little Barbara Walters: “So do you have family? Where are you from?”

She tells us that she’s married, has four kids (a set of triplets among them!), and hails from North Dakota. She is a doting grandmother. She met her husband of 40 years when they were 5. At some point, she said that she was raised on a farm, dubbing herself a bit of a farmgirl.

And at this point, I confess that my sensors were clicked off and my mouth detached from the brain as I delivered the next line: “You flirt like you are a farm girl, too.”

The room fell silent, and Patti looked stunned.

I lacked fear at this moment: I was calling it as I saw it. Checkmate.

Patti regained her composure, and all of the sudden she was giggling.

“I don’t think anyone has ever said such a thing to me?!”

But the others joined in the merriment. It’s a fact: she is a big-time, overt, loving, professional flirt. And get this: all the people in that room agreed with my assessment.

So, the news about Jim remains optimistic. What label we use almost doesn’t matter: instead, perhaps I need to frame this in terms of goals instead of life spans.

Each goal met means a life best lived.

(Do you see what I did there? One beat words save the day.)

OK, I need to make the Dunkin Donut Coffee and hit the sack.

I’ll write more tomorrow night. Jim has appointments with radiation and oncology.
Stay tuned.

Love, Melissa


Status quo/Get up and go

“Just get on the bus, Gus…”

Hi, 
Often when we use the phrase, “status quo,” often it has a negative connotation. In this case, I offer it as a positive. What I see around here makes me want to get up and go. You can join me if you like. Read on for more info.

We are 19 days out from tumor eviction. The Patient maintains a healthy appetite, often eating a meal and a half sometimes. He also sounds like his regular self, yet he says that words still elude his grasp at times. Today, he told me he was searching his mind for the word “filibuster.” Typical of him, the news junkie, to chase down a word such as that one!

In my observation, Jim is steadily and generally the same. He still is in no pain. He is drinking fluids and toileting appropriately. My hope is that his sleep cycle swings back to normal. The steroid he is on can disrupt sleep. So can a big health scare. But to his credit, he takes power naps, or power rests, as he calls them.

He does still drop things every now and again. His body doesn’t always lineup with his EZ chair before sitting down. He says he still has a hazy feeling in his head. 

Not perfect, but certainly not worse by a long shot. Sometimes he says he feels better. 

In the mornings, after I work out, I pull up a folding chair next to him and quiz him on how he is doing. I sense his resolve to fight as he stabilizes, especially when he says, “I’m fine.” As he talks, I often squeeze his arm or touch his shoulder. Gotta let him know how much I care in large and small ways.

Honestly, I’m kinda stunned on how well he’s doing. Just ask anyone who’s come. He doesn’t look nor act like a cancer patient. 

Last week, we went to Cal’s Barber, a local guy here in Mound. Been here for 53 years, and he did The Patient a solid by shaving the beard down to about 1/8th of an inch along with shaving his head. Jim looks fabulous. (Yes, of course, I’m biased.)

Last Friday, Janelle, a nurse at Abbott, removed the sutures from Jim’s head. She also took some time to answer a bunch of our questions. She even offered two lovely ideas: one, in response to my question, “do all patients seem to recover this well?” she said, “He’s ahead of the curve.” And as she listened to Jim describe his life, his community, and his family, Janelle simply said, “Jim, you’re a good guy.” Goosebumps.

When I had the downtime, (read: at night!) I put together my first class of two, posting syllabi and assignments. Rachel helped me go through my clothes and swap out winter for summer. (Although I don’t think it feels very warm today! Oh Minnesota! You fickle weather beast!) The second class starts in two weeks, so I’ll work on that later.

About two months ago, we ordered a special sling for Rachel that allows her to practice sit-to-stands and take steps with the help of our ceiling lift track. It finally came this past Saturday!! You must understand that Rachel’s lack of ability to help with transfers is a BIG PUZZLE PIECE that is missing. IF, and it’s a big if, we could get Rachel to actively participate with transfers, it would go a LONG way in helping everything we are attempting to do. This sling could assist us in making it a reality. If you wanna see it in action, or maybe even help, let me know. More on that in a bit.

Saturday also brought a successful “college try,” cleaning, and company. For the first time since diagnosis, Jim was able to get Rachel up for the day. Our ceiling lift system makes easy work of that. Nobody “lifts” her when using this. I was able to sleep in a little, too. Yet, I spent most of the day cleaning. Jim helped with dishes and laundry.  

Later, Grandma Kathy came out with steaks for dinner; Jim grilled them to perfection. In addition, that terrific BOH meal train brought Amy and Phil Velsor over with brats and all the good sides. (They stayed for a brief visit with BYOB cocktails.) So, we ate very well, and Dylan’s asparagus only added goodness. We had a great meal, great night, and great company. 

That brings us to now, Tuesday, May 31, 2022.

Ever since Jim got sick, my mind has swirled with all the details of making this summer work. Mark my words: this Bus has rolled forward, even in the face of Jim’s restrictions, thanks to the help of special individuals, such as Emily Anttila, Seth Reid, Dylan and Ali Reid, Jim and Aaron Martin, Chris Castino, and Turnar Kist, our morning helper. If I forgot someone, do forgive me.

But now, we shift to a new phase, and it’s called summer, which brings us Rachel’s therapy and now Jim’s radiation, soon to begin. I still need help. And not just with driving and transfers.  All three of us will need changes of scenery as well as company. If it’s okay with you, let’s keep the meal train up and running. TIA.

Here’s what I am going to do – I’ll create a three-week schedule here. I will plainly state what I need/want. If you can help, text me at 612-759-1749. Some tasks need strength for Rachel’s transfers, such as when we go to therapy. Others are taking Jim to Abbott. If you come to keep Rachel company, be ready with a fun activity. If you want to stay for a couple of hours, I can show you how the ceiling lift works for toileting. When we get a good lesson on how to use the sling, I might ask for strong arms and happy hearts to help with some PT at home with Rachel. Like most kids, they behave better for everyone else and less for mom and dad. Am I right?

Maybe you have kids (both actual and at heart!) who wanna do activities with Rachel. I might need someone to take me out for coffee or a long walk.  You can take any slot you like. You can suggest anything. Take a look, and book it with text:

SundayMondayTuesdayWednesdayThursdayFridaySaturday
6.5.22        6.6.22

Someone keep Rachel company while I take Jim to Abbott   –OR–  

Uber for Jim for radiation
6.7.22

Rachel to see Ortho in Maple Grove.
Be here by 11:15.

   
Uber for Jim for radiation.
6.8.22

Rachel to see PT in Maple Grove. (MG for short.)
Be here by 9:15.

Uber for Jim for radiation.
6.9.22

Someone keep Rachel company while I take Jim to Abbott   –OR–  

Uber for Jim for radiation.
6.10.22

Someone keep Rachel company while I take Jim to Abbott   –OR—  

Uber for Jim for radiation.
6.11.22

Take Jim out to run errands, a movie, or coffee. (This guy gets a little restless….)

Come and entertain Rachel while Melissa grades, etc.
6.12.22



We hope to get to a family wedding!
6.13.22

Someone keep Rachel company while I take Jim to Abbott
–OR–  

Uber for Jim for radiation.
6.14.22

Someone keep Rachel company while I take Jim to Abbott
–OR–

Uber for Jim for radiation.
6.15.22

Rachel to see Speech in MG. Be here by 11:45.




Uber for Jim for radiation.
6.16.22

Someone keep Rachel company while I take Jim to Abbott
–OR–  

Uber for Jim for radiation
6.17.22

Rachel to do pool therapy in St. Paul at 9 a.m. Be here by 8:00 a.m.
(She uses an underwater treadmill!)

Uber for Jim for radiation.
6.18.22


Come and entertain Rachel in the afternoon?

Maybe you can help Jim and me get out for a movie/dinner?
6.19.22

This is Father’s Day: we’ll likely have family over!
6.20.22


Rachel to see PT in MG. Be here at 9:15.  

Uber for Jim for radiation.
6.21.22

Rachel to see OT at MG at noon. Be here at 10:45.  
 
Uber for Jim for radiation.
6.22.22

Someone keep Rachel company while I take Jim to Abbott –OR–

Uber for Jim for radiation.
6.23.22

Someone keep Rachel company while I take Jim to Abbott –OR–

Uber for Jim for radiation.
6.24.22

Someone keep Rachel company while I take Jim to Abbott
–OR–
 
Uber for Jim for radiation.
6.25.22

I think we will all need some distraction by this point. Be ready with creative ideas, as a whole family or separately.

UPDATE: When I say “Uber for Jim for radiation,” that means I need drivers to take him to and from radiation.

Let’s start with this. Our needs will change over time. Can you shift gears with us?

P.S. If you can’t help with this stuff for whatever reason, that’s okay. Sending greeting cards with encouragement really lift our spirits. Leaving a message on FaceBook or on my blog, with a word of love is always welcome. Just knowing you are there with us on this journey means so much.

That’s plenty for now.

I hear you, and I love you too. I know you’re praying and sending us good thoughts.
I really can feel it!
Melissa

The treatment

Boxing Gloves and a Bracelet

Dear BOH,

It is May 25, 13 days out from Jim’s tumor removal.

So much has happened since then. I have witnessed Jim’s own healing process already in progress. His hand works, and he fed  himself ice cream right last night. He can recall his birthday with relative ease. He has no headaches. His aphasia is present but in far lower levels. In many ways, he acts and appears to be the same guy.

Jim has been on the phone with Costco, Abbott, and a patient advocate from HealthPartners. Between all three, this cancer journey should be largely covered. Yes, that’s a large slice of miracle pie.

Yesterday, Jim and I attended two meetings at Givens Brain Tumor Center at Abbott NorthWestern.

The first one was with a cancer nurse. She was pleasant, prepared, and pointed. She bore a kind, measured smile coupled with a positive attitude. She wore a clear mask as she walked into the room. And she was clear and complete in her information.

We discussed Jim’s current physical conditions and expectations from treatment. She asked a bevy of questions. Nothing in this exchange felt ominous. Once she gathered all her info, she closed the laptop and exited the room to make way for Dr. David Monyak, radiation oncologist.

Within minutes, Dr. Monyak enters the small room. Once again, the mood is the same as it was with the nurse. He smiles as he enters, wearing a clear mask, and delivers lots of valuable, at times harsh, and yes, hopeful information.

I’ll list my takeaways:

  • Jim has a level 4 case of glioblastoma. The worst kind. The most common.
  • The surgeon took out the tumor, but had to leave some of it behind to avoid damaging any brain function. The metaphor I’ve heard others say is that it’s like a walnut, and what’s left behind is the outer-most shell.
  • The post-surgery MRI also revealed that the tumor is the aggressive kind. While the tumor is mostly out, the cancerous cells are trailing outward from the initial tumor area. Therefore…we will act very soon.
  • Jim will undergo radiation and chemo, and it will overlap. (He is also doing a clinical trial, but more on that later….)
    • Dr. Monyak described this radiation with careful precision, much like the process itself. The care team will make a special radiation mask for Jim. Think Hannibal Lecter, but less chianti. The mask covers his whole head, leaving a space for his nose and mouth; it also has several holes punctured into it, whose sole purpose is to provide a guidepost if you will, for where to aim the radiation beams.
    • Here’s a really fascinating point: When a patient undergoes radiation, the goal is to kill the bad cells, thereby choking their ability to grow and advance in the brain. That much makes sense, but the team will do it in small amounts over a prolonged stretch of time. Jim will feel little to no pain.
    • Also, the 24-hour period break between treatments allows for the radiation to wage war on the cancerous cells, yes, but it also offers the brain the opportunity to replace the cells by creating and growing healthy ones. That is utterly fascinating to me. But that should not surprise me, as Rachel’s journey has taught me that the brain, along with the rest of the body, wants to heal.
    • The R-word: In this entire process, to date, I have heard a lot of hard things, ugly things, and just plain scary things. I suppose I should be grateful for the honest assessment. But today, I finally heard the R-word: remission. As in, even at this level-four diagnosis, remission is possible. That’s what the doctor said to us.
    • Along the same thinking, he does have patients who beat this and enter remission. He also mentioned that some have remission and recurrence, and when that happens, the patient can receive more treatment.
    • Jim Reid faces a treatment regimen that will take a year’s time. The big stuff will take place over the summer.

OK, that’s a lot. I will let you ruminate over this information.

The next meeting after this one was about clinical trials. Jim made a solid decision to participate in one. This will be built into the regimen that awaits him. I don’t know the name of the trial, but I will include it in a future update. My brain is fried, and so is yours, I bet.

We left Abbott around 12:30. We went to Best Buy to replace the Ninja blender that had a broken latch and a sudden crack in the carafe. We thank our Angel-givers for the resources on this. Jim will be able to keep making his healthy smoothies each day.

We got home and rested before Rachel got home. Our afternoon helper, Jim Martin Jr., came with two pairs of boxing gloves. Mine is pictured here. This gentle man knows a lot about fighting: he is a Lymes Disease survivor. He is also living with the pain of losing his sister to suicide last fall. His gift of small gloves moved us in a big way. Despite the strange times we all live in, his smile and laughter inspire me to help my own husband fight.

The other item pictured is a bracelet with the appropriate motto for cancer: my stepdaughter, Ali Reid, gave it to me. I will put it on tomorrow.

This adventure of treatment starts at the top of June.

I am fresh out of words and pictures. You must take over from here for now. You must continue to do your part with the heavy lifting of faith.

I will report to you in a few days.
Melissa

The mundane, the moving, and a meal train

Happy Saturday, 

I know I shared some hard news about Jim’s diagnosis. One could call it a pot hole. Jim Reid calls it a dick-punch. Both apply. Choose the one that fits your worldview. It’s a free country, right?

I am determined to seek out less chaotic commutes. I think I found a few.  

Yesterday was a busy day. Once we got Rachel off to school, thanks to the ever-charming Turnar Kist, Jim and I ran a few errands. Lately, the steroid he’s on to shrink the swelling requires food. Culver’s has become a high-noon stop to keep his stomach stable. When we go places, it is strange for two reasons: I am driving, and it is quiet. We might make small talk, but we are inside our loud feelings, and I myself find it hard to say stuff out loud.

When I steal a quick sideways glance at Jim, his eyes hold a thousand-mile stare. I do my best to let him process his feelings, thoughts, etc. I steer the car, while my love holds his questions and tempers his fears. Mine too.

Early afternoon, we hosted guests for a brief visit and high-octane prayers. Di and Rob Kistler, friends from our former church, Woodland Hills, come with beer and books. Not a bad combo, if you ask me.


They ask questions, and as they speak, they both gesture often with the palms of their hands up, as if to usher our pain to God. They listen to our story, and then they close out the visit with passionate requests from God to heal Jim. Di even steals one of my better lines, “Lord, I’ll say it like Melissa, we ‘pray for a fucking miracle!’”

**NOTE: I doubt God is deducting points from prayers because we drop the F-bomb on the BOH. Nah.

As the Kistlers left, Seth breezed in: he was there to help get Rachel upstairs to the main floor. While that was happening, I entered a Zoom meeting for Rachel’s IEP, hosted by Turnar. I had to numb myself up for this. The only time I really lost it was when I pointed out to her special ed teacher that it was his leadership and loving care for Rachel and her classmates that inspire his students to reach milestones. (Dear reader, please note that he is, indeed, a very special young man with an old soul. Rachel is so happy in his class.) The meeting ran long, but it was highly successful as we set goals for the next year.

About twenty minutes later, we welcomed our first meal train giver, Jen and Mike Salvati. They stood in our kitchen for another brief visit and a particular story of hope. Her mother had a tumor wrapped around her spine decades ago. She beat it, still lives today, and the tumor has disappeared. I am sipping their gift of Moon Haze from the makers of Blue Moon. Mighty, mighty tasty!

Later, as I climbed into bed, I noticed that Jim is not snoring. It is too quiet. Before I pull out my hearing aid, I stop, hold my body tight, and listen for his breathing. Once I hear it, I click off the world and allow sleep to help me restore the will to hope.

In the before-tumor times, Jim would get up with Rachel on a Saturday, and I would sleep in. Good times. I am a little scared that may not happen again. Typically, when Rachel wakes up, we give her the Ipad before doing the hard work of getting her up. When I woke up, (and I did sleep in!) I walked out into the living to find Jim talking with his brother on his cell. Rachel is still snug in her bed, watching Grey’s Anatomy. She let me have a cup of coffee before demanding I get her day going.

Rachel seems to understand the gravity of the situation, and she offers help, love, and patience in her own way. Recently, while getting her dressed, she took her one good arm and gave me a tight hug as I was pulling on a shirt. When we talk about the tumor, she will stick her pinkie finger out to show that she understands that the shape of that pinkie nail represents what’s left of the tumor inside Daddy’s brain.

After I gave Rachel a tubby, we headed into the living room and did the normal things on a Saturday. Over coffee, I grabbed a pencil, paper, and clipboard and created a list of things we hope to finish this weekend. Things like meds, tweet to the family, fold laundry, clean out cat box, change sheets, vacuum, sweep and mop, straighten Mom’s desk, take out garbage, popcorn, and play UNO.

So, we worked. Jim does dishes. I swapped out the litter and mopped around the cat box. Rachel keeps Daddy company as he cleans out the fridge. The talk in loving tones of father/daughter. It’s beautiful. And it’s normal.

All day, Jim is pain-free. No headaches at all. His toes sometimes turn cold, but not always. He still feels woozy. His speech skills are still far superior to the hard-hitting aphasia he experienced. He appears the Jim I’ve always known: smart, funny, hardworking, and doing what he can.

At about midafternoon, I run a few errands before our next contestants on the “Take-them-a-Meal” train come. It’s the fabulous Mike and Emily Colestock, whose son, Andrew, is the same age as Rachel. In fact, we have known this family way back when our kids were in preschool. A long time.

They arrived with a meal along with fresh watermelon, several cases of LaCroix and Diet Coke, and creamer. Unfortunately, Andrew was working, but Mike and Emily brought their A-game of love.

They came to listen. They came to laugh and smile. And they prayed at my request. But one moment that caught my eye was between Rachel and Mike. I got up to grab something from the kitchen, and when I came back, Mike had found the UNO deck of cards. For the next 45 minute to an hour, Rachel and Mike played a 3-game tourney of UNO. Rachel was at full ease under Mike’s charm and kindness with a dash of wicked humor. My heart burst at the magic I saw in this not-so-small miracle.

Now, late at night, my family is sleeping. With luck, I’ll be able to spend another normal Sunday with my tribe, clicking off the list of things to do while enjoying the Mexican meal from the Salvatis.

My second beer soothes me now, as I reflect on the last two days. Over the years, I have witnessed Rachel heal in deep, sweeping ways once home from surgeries and hospital stays. It is my belief that being home allows for that restoration to happen both at the molecular level as well as the spiritual. It is happening now for Jim.

I’ll write again in a day or so. Keep that vision of healing for Jim at front and center. Keep Rachel’s wide, heart-stopping smile during a simple card game in your thoughts. Keep me in the sweeping-upward palm of your hand as you help me ascend a jagged mountain of faith.

Melissa

The Lucky Seven

The news is this: Jim has terminal brain cancer. Life expectancy is 14 months, but consider that number based on stats, right? More on that in a moment. Save your tears for now.

He will undergo radiation/chemo in a week or two. Both treatments will be overlapped for the duration of about 6 weeks. Then, he will begin a new, FDA approved approach that involves magnetic waves. I believe his treatments will take him to the end of August.

Now, this is where I offer you hope, believe it or not. I didn’t attend the meeting about his diagnosis and treatment. I wanted to care for Rachel’s needs as she got off the bus. I did send a trusted friend of the family, Emily Anttila, to drive him to the appointment and be a second pair of eyes and ears. She is a social worker and is well versed in advocating in medical situations such as these. 

When they got home yesterday, I asked them both what the team at Abbott thought about Jim’s current condition. You must trust me when I say this: he does NOT look nor act like a cancer patient much at all. He has regained quite a bit of functionality in a short time. For example, the day the shit hit the fan, and he began talking jibberish, I asked him when his birthday was: he could not get those words out. That was literally ten days ago. 

Today, when a patient advocate called from HealthPartners, he could recall his birthday with relative ease. His speaking skills have come roaring back. He can make smoothies, bathe and toilet…Another area that was a struggle was logging onto the bank via his phone. He asked for assistance for the first few days. Now he can do it independently. 

The team at Abbott seemed to offer a carefully optimistic view that he could be to the right of that bell curve. They said aloud to Jim that he has 2-3 years, but the team also cited patient examples who are alive 10 years past original diagnosis. And they suggested the potential of a longer life span based on how Jim acts and appears healthy right now for a guy with a ten-inch long scar on his head. Jim said to me that he felt that we would be able to experience several holidays and birthdays ahead. 

I share all this to show why I’m not sad…yet. I remain hopeful. And I think we can do a lot together to make a great life for us now as well as make as soft a landing for me after he passes. 

One thing that we’ve learned on our journey with Rachel is the concept of miracles can appear in more than one form. When Rachel got sick, we all wanted the overnight miracle where she could walk and talk immediately. It was Jim himself who said that if we only got the quick fix, we might miss the other miracles along the way. I am witnessing love here. And I’m watching Jim realize just how much people care about him. For the “I’m not special” kind of guy, he is NOW getting the message of how he is so loved. 

Perhaps this diagnosis is oddly the biggest miracle Jim could ever receive, in the strangest way possible? 

This is what I know now. He is appropriately stunned, strong, and resolute. He was also open to traveling once his treatments were done. I am here to support, love, and care for him as best I can. 

I have finished my grades, and now I shift to the class called “Brain Cancer 101.” The summer contains treatments 5x a week, Rachel’s therapies, and my own teaching.

It’s gonna be a busy summer. I am going to need a fleet of drivers for multiple purposes. That means I will continue to lean on family and the Bus for support. 

Jim is now 63. I proclaim that he will see 70, so I’m calling this “The Lucky 7.” 

Reach out to me with any questions or concerns. I love you all so much. 
I’d be so lost without you. A bus without a road! 

Melissa 

Weigh Station

Home is where….

In a moment like this in my life, I am holding on to routines. So I get on the treadmill. I bathe Rachel each morning. I make sure that, as a family, we’re eating dinner and sitting in “the circle.” I think such routines provide comfort and direction, no matter what is happening.

Today, after getting Rachel onto the bus, I madly finished grading one class of two. By 11, Jim is restless and anxious to get out of the house. So we hopped in my van, and I drove us to Costco. During discharge, they recommended that Jim make an effort to take care of himself. So, we made a big purchase of ingredients to make smoothies. Rachel is so excited to try it out.

All day, I watch for him to do something that sounds an alarm. He told me that he feels a little woozy. His headaches are very small, fixed by aspirin. But the biggest complaint is fatigue. Severely tired. He has not puked, had a seizure, or run a temp. If he didn’t have a big bandage on his head, you wouldn’t know that a neurosurgeon evicted a large marble-sized tumor from this man’s head.

While he might look “normal,” our conversations are not the everyday variety. He has what he considers to be a terminal condition. He seems quite clear-eyed about that. And he said many times that he’s not afraid to die. It’s the people he leaves behind (and loves) that hurt his heart. When I asked today about a funeral, he didn’t think many folks would come.

So, as his wife, I am at a crossroads. I see a man who’s in pretty good shape for all that’s happened. I also cannot forget that he is the same man who couldn’t speak a week ago. So why is maintaining hope so hard this time around? The first test of faith was my dad. He battled and bought himself four years. Then Rachel began her journey, and all she does is persevere. And now, I am bearing down the road, seeking the right speed and gears for hope and faith. And it’s harder than ever.

The one thing I did finally hear today was that he was ready to fight. He wasn’t going into this boxing ring sitting down. I took notice of that. I have to take that as my cue to fight with him. To see him through many birthdays, holidays, milestones…the manna of life.

We will know more information when he gets back from his follow-up on Thursday. For now, I shall try to maneuver the bus by sticking to routines, keeping my ears and heart open for signals or changes in any one of us, and inserting love languages and levity with precision and panache.

Terminal? How about every day has a resting place? And each time you reach it, you’re right where you belong? Especially if love is the so-called “end game.” Right?