Peanut Butter Explosion: a flavor at your favorite ice cream shop? Or what happens when you try blending a smoothie as you are rushing out the door. For me, it was the latter.

It has been a month since I’ve written a blog entry. I feel like there is a lot of catching up to do. But then again, maybe not. This blog started as a way to update friends and family on Erica’s condition. Changes were frequent and significant. Lately, we’ve been managing a steady state; no hearing loss, no broken bones, just a bit of digestive system management. To spare you the discomfort and save Erica’s dignity, I’ve held off on posting those details. So, not much to report. But that’s where this story begins.

For the past few treatment cycles (i.e., infusions of Enhertu and Avastin every three weeks), Erica has struggled with inconsistent digestive patterns. This has lead to appetite changes and a constant battle with finding food that Erica will tolerate that also provides nutrition. Chocolate Ensure has become the go-to. (Side note: Ensure could use a fresh branding campaign, because that stuff is not just for old people. It’s actually pretty good).

With the Ensure supply running low and no other solid meal seeming to spark interest, Erica’s mom remembered that Erica used to love a chocolate peanut butter banana smoothie that we would make. Erica agreed to give it a try. Great, we have a winner! Unfortunately, Erica likes the way I make them and I was on my way out the door. So, I quickly grabbed the blender, bananas (hint: frozen bananas are the secret to perfectly thick, cold smoothies without the drink getting too icy. Peel, half and freeze bananas that get a too ripe so that you always have a stash on hand), chocolate protein powder, milk, ice, and a heaping spoonful of peanut butter. Throw it in the blender. Do not scrape the sides of the blender with a rubber spatula while the blades are running… unless you are going for a Peanut Butter Explosion.

The sound of grinding blades was awful, the cold liquid blasting my face, I smacked the off switch and stood silently, stunned. Thick, cold substance oozing down my face, drips from above steadily dropping on my head. The smell of peanut butter was rich in the air, and on the cabinets, ceiling, counter and floor. As my anger started to rise, I heard a beautiful, familiar sound. Erica’s laugh.

From two rooms away, Erica had a line of sight to where I was standing. She was in a room with her mother and our neighbor Terra who could not see me and were just chatting away. As my eyes met Erica’s, I caught the vision of what she must be seeing — her man soaked and dripping in liquid chocolate peanut butter. Her infectious joy washed over me as I too started laughing.

Shout out to Loretta and Terra, for quickly jumping in to help (which they so often do). I resisted for a moment, feeling that it was my mistake, my mess, my responsibility to clean up. But help is a blessing and I’ve learned to receive it. Yay!

“I know John Mayer and I would be best friends if he met me.” says Erica in full sincerity. A claim she has made since she started listening to his podcast in 2018. I sort of believe her. They have the same sense of humor and who hasn’t befriended Erica when meeting her?

While I do appreciate John’s sense of humor, I have become a huge fan of his lyric writing and guitar playing over the years. So it was a great privilege for Erica and I to see her “best friend who she has never met” perform live last night. This moment was a long time coming as we had previously seen John in 2019 but had to give away our concert tickets twice over the past 4 years due to Erica’s health. (We did get to see him as the front man of Dead and Co last summer, but those are not his songs and a completely different vibe).

So, with Erica in her wheelchair and the help from our son Christian and his girlfriend Lauren, we navigated the crowd to the front section seats where we sat just under the jumbo video. Her hero larger than life just feet away. Unfortunately, I had not taken in account the better side for her good ear. But the music was more than loud enough and brought smiles, and an occasional whoo-hoo, from her all concert long.

This event came on a rough day. She just had treatment on Wednesday, so we are in the stretch of days where fatigue is at the highest. She requires 12+ hours of sleep, everything is more painful and movement is much more difficult. Erica continues to amaze me with her courage and commitment to live life to the fullest of her ability.

During the concert, Lauren asked me my favorite John Mayer song. I did not have a quick reply because he has covered so many styles, life moments and emotions for us through the years. But recently, I’ve been greatly moved by ‘Stop This Train‘, a song that challenges the non-stop journey of life. In the bridge, John asks his father how to stop the train, to which his father replies, “Don’t stop this train. Don’t for a minute change the place you’re in.”

I thank God that I know where our train is heading and celebrate every memory along the way.

(For those interested, I’ve posted a clip below of why I insist on seeing John Mayer live whenever possible).

Erica’s 3 month, full body CT scan results came in today — “No suspicious cancer activity. Fracture deformity noted within the right clavicle.”

I’ve not seen Erica more proud in the entire 30 years that we have been married. In my last post, I told how we’ve raised two very competitive boys. I thought they got that from me, but now I know otherwise. With a glow of pride in Erica’ face she responded, “Really, I broke my shoulder? I can’t wait to tell the boys.”

This news does not take away her shoulder pain and the challenge of already restricted movement, but it did confirm that her pain was not imaginary and the thrill of her bike wreck was worth it… And, the boys were impressed with how tough their mom is (although they already knew that).

This news came as we are relaxing with her aunt and cousin in Wilmington/Wrightsville Beach, NC. Nothing like good home cooking and being near the sea to make everything feel better.

We are thankful that Erica’s body continues to be cancer free. As we wait for her next brain scan, she continues to work with speech and physical therapy to improve in all areas. We continue to learn how to support her in the day to day.

But this week, we are both enjoying a different pace of life.

August is birthday month for our boys, Bram the 21st, Christian the 31st. With their college and adult schedules, it has been difficult to get together and celebrate. So, we were happy to be able to make the hour and a half drive, each way, to meet them for a meal on Labor Day. Erica had really been missing the boys and this short visit was the joy-boost that she needed.

This has been a difficult and disappointing week following Erica’s trike accident. Yes, the bike that has been a motivator and topic of excitement suddenly became a point of fear and sadness. Up until last week, she had been riding in a vacant school parking lot. This week, the air turned cooler and we got a bit ambitious, deciding to take it up a notch and go to a park. With cars, dogs, other bikes wizzing by, Erica went off the road, flew like superman (her words) and crashed on her shoulder, thankfully in the grass. The injury is severe enough that her arm will be immobilized for a few weeks. Her pain is great, but emotional discouragement may be the greatest hurt of all.

There are moments when I see a maturity in my children that surpasses the level to which we raised them. Lessons that they learned in life, not at home. Lessons learned by risk, fully committing… and getting hurt. Learnings that they can pass to others, even their mother. Our boys grew up very active in contact sports; ice hockey, lacrosse, and rugby. They certainly knew the pain of sprains, broken bones, surgery and concussions. Our home has been converted into an infirmary many times. So when they heard of their mother’s injury, I could hear the true empathy in their voice, even over the speaker phone. But after listening to her story of the crash and the pain that followed, they each responded, with their own words of wisdom.

Bram had severely sprained his shoulder, neck and chest in a high school ice hockey game. He was immobile for weeks, should have missed the entire season, saved only by COVID postponing the season for over a month. He knows the pain she is dealing with. Every little move hurts and sometimes sitting still hurts worse. He told his mother (paraphrase), “It was five weeks before I could fully move again and a year before it fully stopped hurting. But when I realized I would be able to finish the season, I got back on the ice after about one month. Just practice at first, and it hurt. The coaches eased me in and I got to play the final games. He told of F1 drivers who crash get in the simulator right away. You have to get back in the cockpit or live with regret.

Christian picked up on Erica’s disappointment as she was expressing failure. She had been progressing so well through physical therapy. Now, how far would weeks in pain and a sling set her back? To this, Christian confidently told his mother that this was not a set back. She was trying something new and simply learned what not to do. (Paraphrase) “When you get better, just go back to the last thing that you did comfortably, something that you know you can do. Go back to the parking lot. You are not going backward, you are just starting again where you left off.”

This is what I heard:

To fully heal, you have to recover mind and body simultaneously.

and

When you are pushing yourself further, failure is not a set back, it is a good try.

These words were for Erica. But also for me. And perhaps for you.
Is there something you need to overcome? If so:
Are you focused on improving your mind or body or both?
When was the last time you took a risk and gave it a ‘good try”?

Scanxiety. No, I did not just make that word up. It is a very real part of a cancer survivor’s life. For many, it happens every three to six months, just before the MRI or CT scan that determines whether your next three to six months are going to suck or not. And then you get to do it all over again three to six months later. For some, scanxiety is like PTSD, it leads to physical symptoms, depression or anger. For Erica, it is a quiet, “I’m scared. Talk to me.”

So, we did a lot of talking last night as we mentally and spiritually prepared for her brain MRI today. I’ll admit, after the roller-coaster of the last six months, I had concerns of my own. What results would we get? What new news would disrupt the progress that we’ve worked so hard for? We are just getting used to this new normal, what changes will we need to make now?

The results of her MRI came around 2 p.m. today with great relief when the doctor said that everything we are doing is working just as it is expected. The most concerning areas of lesions and edema (swelling) show “considerable decrease since the prior exam.”

There are still a lot more considerations that Erica’s team of doctors still need to discuss. And there are still many of her symptoms that don’t exactly align to one cause. So the battle is far from over and we don’t have all the answers. But we do have good news today. Answers to prayers and a refreshed joy.

I am writing this blog from my back deck as Erica sings out loud, in her slurred speech, struggling to keep up with the lyrics to John Mayer’s, The Age of Worry – “Rage in the age of worry, Sing out in the age of worry, And say worry, why should I care?”

When I asked Erica if she thought she would sleep well without anxiety tonight, she quickly replied, “Well, I’m just happy to not Rest In Peace.” 🙂

Erica had her regularly scheduled oncology check up and treatment today. The doc is very happy with her current treatment so decided to continue as-is until we get MRI brain scans next week. This is good news because when the doc wants to make a change, that usually means there is a concern. Erica’s vitals and other tests are excellent. Best blood pressure we’ve seen in 4 years!

The treatment went smoothly. This is the third round of the Avastin/Enhertu combination. We will see how this is going when we get the scan results on 8/21. The doctors will be looking for changes in brain swelling and treatment effects in addition to tumors. It’s hard to imagine that things could be going in the wrong direction when everything we are seeing from her physically and mentally is going in the right direction. But this rational thought does not take away the fear that creeps in. It is irrational faith that brings us peace.

With all this going on, it is back to school season. Our son, Bram, starts his senior year at John Carroll University this week. So like every college parent, Erica and I made the annual Sam’s Club run. Although for Erica, this was the first grocery store experience since being out of the hospital. She insisted that she come along. We had no idea how this might go, but in the end, we may have had a little too much fun!

It has been two weeks since my last post. In that time, Erica and I drove to Maryland to visit my father, my sister came to visit for three days, my mother has returned to her home in Florida, Erica has been learning to ride her new trike and she went to the ear doctor. So needless to say, this has been a busy stretch of ups and downs in a short time. I could have written complete posts about each of these experiences because the reflections go deep. But for the sake of catching up, I’ll skim the highlights.

My birth father lives in an over 55 community in Maryland with level lots, homes built for accessibility, safe sidewalks and a community pool. Everything was so easy, as if it was designed for Erica. We met new friends including Kelly, an amazing woman who has been legally blind for over thirty years and has learned to adapt to a highly functioning independence. She wrote a book that creatively describes her experience with vision loss and finding excitement while accepting it. What an inspiration and an overall enjoyable, but short, visit.

My sister’s visit was another inspiration for Erica. At age 44, Kristin had a severe brain injury that caused her to not be able to walk due to balance, she struggled to form words and could not focus on single tasks. Sound familiar? After three years of therapy, Kristin is now able to plan trips and travel on her own from Florida to Pittsburgh. My sister is able to understand exactly what Erica is feeling, physically and emotionally. They spent three days talking and laughing. And without saying a word, she challenged Erica to climb stairs without assistance. If Kristin can do it, so should Erica!

My mother returned to Florida with my sister. And as our youngest son, Bram, returns to college on Friday, we are beginning the transition to relearn life in an empty nest. We will certainly have help from family, friends and the church, but nothing can compare to the six weeks of full-time dedication that my mother committed to living with us. What started as complete caregiving, became support and then light assistance — I am convinced that Erica’s improvement could not have been as rapid and successful without my mother’s commitment. We will be forever grateful.

And the update you’ve all been asking and praying about… the hearing. The ENT surgeon and audiologist confirmed that Erica has complete hearing loss in her right ear. This is possibly a side effect of earlier chemotherapy, but more likely a brain radiation treatment effect. This is irreversible and was very difficult news for Erica. Just another blow to her health. We’ve been talking about how she keeps winning the battles, but each one leaves a little more scars. The yay is that her left hearing is better than perfect! So Erica is be able to hear just fine (from the left side). Erica’s ENT and Oncology team are in communication to be cautious that future treatments take her left ear hearing into consideration.

So the battles and the biking continue.
Thank you for the prayers.

“You sound like a robot.”
“Ok. I’ll call you back. Maybe its a bad connection”

This dialog was becoming more frequent when I would call Erica — until the day last week that my mother observed that this was only happening when Erica answered the phone on her right ear. After a little testing, we confirmed that Erica’s right ear hearing was not as loud or crisp as the left. (Pause here for a Yay! Did you catch the point that Erica was answering her phone?)

Erica expressed her hearing concern to her oncologist on Wednesday while at her treatment and checkup. Unfortunately, they could not see anything wrong. Good news, right? No, not when every symptom brings out the worst fear. Good news would have been a ball of wax or even an ear infection. But now we are waiting to see an ear, nose and throat (ENT) doctor and praying that this is not another symptom of brain complications. If you are the praying type, please pray specifically that this is not cancer-caused, for peace (for both of us) while we wait, and for miraculous restoration.

But a little ear trouble can’t slow Erica down!
Some may recall that we had a trip to Germany planned in April to visit Erica’s best childhood and life-long friend, Jill. That trip was cancelled by Erica’s hospital stay in March. Jill and Erica were finally reunited this week when Jill came to Pittsburgh — reliving their childhood at the Smurfs movie, getting sick on popcorn and milkshakes (To be clear, these were not memories, they actually went on Saturday night to the Smurfs movie and got sick on popcorn and milkshakes). Later in the week, Erica was able to visit Jill at their childhood stomping ground, Lake Floyd, a small private lake in West Virginia. A day at the ‘beach’, the grassy lawn that leads to the swimming area, is peace for her soul. That evening, I asked what she and Jill did all day.

“Not much. Just sat in the Adirondack chairs all day.”
“Really?” I asked, “How was that?”

“It felt like home.”

Two statements I never expected to hear together, “I’m scared, you have to remember that I can’t even walk well yet.” Followed moments later by, “I love this bike, how do you make it go faster?”

Biking was once a regular outing for Erica and me. Aggressive, single track mountain biking in our younger days and occasional trail riding more recently. So you can imagine how devastating loss of balance and strength must be for Erica. Biking requires both, right? Turns out, not really. After a bit of research, I found that three wheel electric-powered bikes (E-Trikes) are increasing in popularity. With hope of giving one a try and no guarantees, we drove to a local bike shop. When I explained Erica’s condition and asked if they had an e-trike to rent, the shop owner gave me a curious smile and explained that that they do not carry them but happened to have one in the back that a woman had just traded in. Serendipitous!

The shop owner, clearly passionate about the physical and mental benefits of biking, took immediate interest in our mission. He dropped what he was doing to prepare the trike for a ride. With extreme caution, Erica stepped over the bike and put a foot on the peddle. She was fearfully determined.

After riding a bike for nearly 50 years, it was hard for her to believe that the bike would not topple over. Just sitting on a bike when you have balance issues is brave. Learning new skills such as coordinated throttling and breaking when you are just relearning daily skills such as applying makeup and brushing teeth must be overwhelming. After a tentative lap around the parking lot, cheered on by the shop owner, we set off. With the bike on the slowest speed, I walked alongside. Erica, white-knuckled, stressed and threatening to turn around, stumbled and persisted for the first 20 minutes, about a half mile.

After a short break on a shaded bench, we headed back to the bike shop. This is when my walking became a jog and then a run to keep up. This is when I heard the words, “I love this bike, how do you make it go faster?”

I think of a favorite phrase of our former paster and Pittsburgh Steelers Chaplain, Kent Chevelier, “Do It Afraid.” Erica and I are both living this out in different ways. We are daily stepping out as fear fights our faith. Sometimes freaking out, sometimes dealing with setbacks, but faithfully striving to get back in the saddle.

Erica and I live day-to-day these days, so even as of noon on the Fourth of July no plans had been made for firework viewing. We were debating between the big downtown Pittsburgh experience versus the main street America feel of Zelienople community park. The city experience presented new, unknown challenges like finding close parking and navigating a wheelchair through the crowds. So, with temps in the 90s, we opted for the small town—assuming more shade, less concrete and smaller crowds.

We arranged to meet up with our friends, the Gallaghers, and got to the park at the perfect time to grab a front row parking spot. We climbed out of the AC-cooled car into the sunny heat. We started to unload lawn chairs to claim our viewing spot when Erica asked a simple question, “Are my eyes crossed?”

If you have read my ‘Mother’s Day’ post, you will understand why this question triggered a panic wave that washed over me. Even though her eyes were not crossed and she did not have double vision, Erica had just taken her first treatment of Avastin and Enhertu forty-eight hours earlier. Our oncologist was very clear that there is little or no documentation of these two medications being administered simultaneously. “Let me know immediately if you have any strange symptoms,” was his clear direction before Erica moved to the treatment chair last Wednesday. Unfortunately, vision concerns were not strange symptoms for Erica. ‘Double vision’ and ’emergency room’ have become synonymous in our vocabulary.

With calming breaths and a racing heart, I helped Erica back in to the car and started the air conditioning again. Reclining the chair and resting a bit, she began to feel more comfortable. A quick prayer and an oversized ice cream sandwich from the nearby food truck took away any remaining fears.

Later that evening when the air started to cool, we laughed as we waited for nearly an hour in line for funnel cake which we never got (why we never got it is a story for another blog). We laughed because when everyone else was standing for that long, hot hour, Erica got to sit in the wheelchair. Who knew being in a wheelchair could bring such happiness? The fireworks were beautiful. The time with friends special. And hearing Erica scream with every flash that preceded a loud boom made my heart race again—this time with joy.

Erica is now independently descending and climbing the steep flight of a dozen steps to our back deck, our private oasis that overlooks a densely wooded valley. She admits that it is scary, but boldly clutches the railing and takes one step at a time. The deck is where we truly love to unwind and host friends and family, so it has been a joy to be back in the back again. When I asked Erica what she wanted to write in this post, she said, “Every day, I wake up believing this is the day I’ll get out of bed and just walk.” Seeing her determination and progress this week, I believe her.