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.

Erica and I have always dreamed of owning a boat. Erica grew up at Deep Creek Lake in Maryland and I spent summer weekends on the Indian River near Rehoboth Delaware. We met at Deep Creek Lake in our college years. I’d stop to see her at work on the gas dock on my way to wait tables at the lakeside Uno’s Pizzeria. The sound and smell of boat engines still bring back those memories.

So this past weekend, when the forecast showed little rain and temperatures below boiling, I could not resist the urge to be on the water. Zach Brown lyrics looping in my head, one of our summer porch sitting favorites:

There’s a place, where the boat leaves from
It takes away all of your big problems.

With Erica just starting to move independently again, I was not sure how she would handle the unpredictable motion of a boat and dock, especially the transition between the two. With a little investigation, I found the perfect solution, a pontoon boat for rent on a quiet lake 40 minutes north of Pittsburgh.

Arriving at the rental facility, I realized that the boat we had reserved was at the farthest end of the dock. This might be a bigger challenge than expected—for anyone but Erica, that is. As I sat in the boat getting the rental rundown from the dock hand, I saw Erica on the long wavy, wooden approach, walking behind her rollator with confidence and familiarity, as a creature in her natural habitat. No fear as her sea legs returned. Thirty years since I dated that Daisy Duke wearing gas dock girl, and she still turns my head.

Being out on the water again was a joy, the steady purr of the engine, the fresh air, sun and sound of the water running past the hull. Erica’s only complaint was that the 20 horse power engine was too slow compared to the 300 HP ski boats we were used to. OK, I thought, she still has her sense of adventure. Maybe that boat dream is still a possibility. We found a still cove, snacked on a picnic lunch. Our youngest son, Bram, was the first to jump in the lake. I was right behind. What is it about floating that washes the troubles away?

Ninety-four degrees on the front porch. I would not want to sit out there. Apparently Erica did not either.

Monday afternoon, I was at work. My mother had been sitting with Erica on the front porch. This is a common place for us to hang out. A rocking chair, covered, shaded and tucked into a huge rhododendron, a birds nest in view where we watch a very cautious mother bird feed her young. My mother had gone in the house to do something in the kitchen when minutes later she heard the front door close. Turning, she saw Erica inside saying something about being too hot as she walked over and sit on the couch. No rollator, no other person to help. Just got herself up and started free-walking across the room.

I was told that this was followed by several trips walking the length of our house on her own, not even holding the walls for balance. Having not seen this myself, I was skeptical until Erica stood from the couch and walked herself to the dining table, finished her meal, stood up again and started clearing the table for the rest of us! As I said before, Erica’s going to do this Erica’s way!

In the past 24 hours, Erica has helped in the kitchen, showered herself and went through her closet trying on summer clothes (many of which were still tagged from being purchased just prior to going in the hospital in March). And today she went shopping. Yes, full-on mall shopping. Erica’s mother and mine, loaded up Erica and her wheelchair and went on a summer dress hunt at the air-conditioned mall. They said that Erica must have stood and sat more than 20 times in the dressing room trying on at least 10 dresses. (For comparison, she has been only doing 3-5 sit/stands when PT comes and had not really tried walking without some form of assistance).

Days before Erica’s new hot streak, I overheard a friend comment about how some people accept their disabilities, thanking God for life, but stop praying for complete healing. She was not talking about Erica, but I realized at that moment that this was me. I have never stopped believing, but I had stopped pleading. Time for a faith check. I fearfully, faithfully and intentionally began to pray again for complete healing–not just improvement, not just joy in the moment, but complete healing. I know that my prayers are not alone because I read all of your texts and comments from this blog and Erica’s socials to her daily. She loves hearing from everyone and is moved. David Crowder sings a line, “…when mountains move, I say, looks like somebody prayed.”

Today, I must say, it looks like somebody prayed. Keep ’em coming.