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.

When Erica and I considered the big theme of the week, we immediately thought of parents. Maybe because Sunday was Fathers Day, or maybe because our parents are just so amazing.

This thankful appreciation of our parents began early Sunday morning, 6:30 a.m. when I picked up Erica’s mom from her home 15 minutes away. She had quickly accepted the request to stay with Erica while I went golfing with our two boys and my birth father who had come in from north-central Maryland for the weekend. Later that evening, my birth mother and stepfather arrived from Florida for an indefinite stay so that we would have live-in assistance as long as needed. We were blessed by all of our living parents in one day, in person, each showing love in their own way.

We can not be more thankful for these four very important people in our life. While many of our peers are beginning to care for their parents, we thank God that our parents are healthy and available in our moment of need.

Our parents love unconditionally. They know our faults and see our needs. They are patient (most of the time) and understanding, giving both Erica and me freedom to do things our way even if their way may be different. I am keenly aware of a mutual adult respect between us while still cherishing the supernatural love between a parent a child.

Each of our parents bring unique personal experiences in caring for the sick. It is as if they were trained for this moment. Erica’s mother boldly loved Erica’s father through dementia. My birth father faithfully cared for my stepmother, who struggled with mental and physical complications for nearly 20 years. And my mother and stepfather witnessed and served multiple siblings and their spouses who battled a range of brain and body diseases. From practical details like dealing with paperwork, rehab and home improvements to emotional support like how to pray and release stress, the experience and wisdom that each of them bring is endless. My encouragement to anyone reading this is no matter what circumstances or personality differences have shaped your relationship with your parents, never discount the value of their experience, wisdom and natural love.

Erica is slowly progressing as she gets re-familiar with home and more accustomed to the therapy routine. Several times this week she has stood and began transitions without warning. I admit, it is a bit scary when she does that, but I also find joy in her courage. She has started to be more independent with some basic tasks and is daily considering her appearance. The ladies will appreciate that she is wanting to accessorize even when lounging. (By the way, if anyone has a trick for putting earrings on another person, I could really use advise). Like all of us, she is best when well rested and nourished, but she tires easily. As her mobility improves, we find that she still needs reminders and cues with each basic task. Short term memory loss will always be a challenge, so we pray that eventually routine will override thought.

It has been a week since Erica has been home from the hospital. But there’s been enough activity for a month. Saturday, Erica attended a baby shower for our niece. She enjoyed the family, friends and food very much, but was pretty disappointed with the outfit I picked out for her. How was I to know that ladies like to wear girly summer dresses to a baby shower? At least we know that Erica is getting her fashion sense back. 🙂

Sunday, our oldest son and his girlfriend came to visit. Monday and Tuesday Erica’s mom stayed with her while I worked. Wednesday, the physical therapist, occupational therapist and refrigerator delivery all showed up at the exact same time. Yes, I said refrigerator delivery. Ours died the first day Erica was home, so we’ve been scrounging out of the mini fridge and coolers for nearly a week. That was super fun while we have also been re-learning how to live in our house with a rollator, wheelchair and safety fixtures in the bathroom.

Erica is doing very well when PT comes. They are still in the process of assessing the home and her abilities, but I can see the difference in the way they work with her and how she responds. I am hopeful for her to regain the ability to move about the house with limited assistance. For now, she needs someone with her at all times. Just a hand to steady her or a simple word or two to reminder of what she needs to do. I have a bit of work to do around the house to make it safer and easier for her.

I’ve been trying to monitor Erica’s friend channels and respond to personal requests. This lead me to discover that a former neighbor recently found that she also has a brain tumor. I invited her and her husband to stop over, which they did. Erica and I both felt blessed to be able to share our experiences as a patient and caregiver. Although sad that this young couple is facing this scary situation, we were inspired by their confidence and faith. I was able to pray for this couple, knowing exactly what they were feeling. To hear Erica talk about her situation to someone facing the same fears helped me better understand what Erica is going through.

I can not give proper thanks to the friends that have given up their days to hang with Erica, for the meals we’ve shared with family and friends, for the laughs and good conversations that help us feel ‘normal’, and the long letters of helpful advice and encouragement (thank you, Kristin). You all are a blessing.