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.

Erica started a new treatment on Friday, Avastin, a medication that is expected to stall any potential tumor growth in her brain while controlling swelling and hopefully reduce some of cognitive symptoms she is experiencing. If there are no adverse effects, she will restart her Enhertu chemo treatments in three weeks along with the Avastin. This is good news because we know that the Enhertu was effective, it is radiation effects and swelling that have been her most recent battle.

It seems odd to say that a treatment day feels like normal routine, but there was something comforting to both of us as we checked in to the doctor’s office, got a thorough check up from our regular PA and found a familiar seat in the treatment room. (Erica gets the comfy reclining chair while I sit in the tiny side seat). Normally, she is about two hours for blood tests and treatment. Today, she was in the chair for 5 hours. The first treatment of any new medication takes extra time as they do extensive blood tests to be sure her body is healthy enough to receive these strong meds, followed by a slow drip of the new drug in case she has an immediate reaction. Praise God that her check up and fluid tests revealed a generally healthy body and we can proceed with the plan.

Typically, Erica naps while I work remotely with my laptop and phone. Conversations can be awkward because treatment rooms are usually open spaces shared with other treatment patients. But on this day, we were a bit more chatty as we were remembering some experiences from her physical therapy stay. Many of which, when played back in memory are pretty funny if you allow for a sense of humor. Stories about the kind-to-a-fault roommate, random wandering, the occasional bathroom mishap… Anyone who knows Erica, knows that her laughter is a gift. It is contagious.

Honestly, most of the time Erica was impatient or asleep. But I like to believe that those brief moments of laughter inspired the other treatment patients, their partners and nurses – just as they did me.

I read a Facebook post recently that touched too close to home. It was simultaneously difficult and inspiring.

“Your spouse is the one who’ll sit beside you when your parents die. Who’ll hold your hand through childbirth? Who might have to bathe you if you’re too sick to stand? This isn’t just about butterflies or date nights. It’s about choosing someone who shows up – in grief, in mess, in uncertainty. So no, I don’t believe love alone is enough. Commitment, maturity, and the ability to endure life’s ugly parts – that’s what sustains a marriage. Because when life gets painfully real, romance won’t carry your character. And the truth is, forever is only possible with someone who knows how to stay when it’s hard to love.” – copied from and unknown author.

While there is a lot of truth in this, I propose a different perspective.

True, romance will not carry us through this broken life’s challenges. But romance is not love. At best, it is only one manifestation of love. Love reveals itself in many ways, romance being one – commitment, maturity and the ability to endure life’s ugly parts is another. But what if we looked at romance differently during tough times? Is it not romantic to hold the hand of a loved one in a hospital bed until she falls asleep or to wheel them from their beige room to the hospital cafeteria for a dinner date? Do we do this out of commitment or out of love?

It is love that bears all things, believes all things, hopes all things, endures all things (1Corinthians 13:7). The irony in the statement that “it is hard to love” is that it is love itself that carries us through the hard times.

I have had the difficult privilege to observe several family members be the caregivers for their spouse. I reflect on and am inspired by their examples of commitment every day (special thank you to those who are reading this). But I am now fully aware that their commitment could only have been driven by love, albeit a hard and sometimes painful love. So I challenge the Facebook post, that commitment, maturity, and endurance is what sustains a marriage.

Perhaps, love alone IS enough.

Speaking of close to home… Erica comes home from the hospital today. Her first time home since May 16. Yay!

Eleven-thirty a.m., Thursday May 29. I was working in my office when I receive a text alert… from Erica James. A simple, “Good morning”. My heart skipped a beat with excitement. Did Erica really text me?

A sudden feeling of normal washed over me. 11:30 was about the time Erica and I would text each other on healthy days. Except for her teaching years, Erica was never an early riser. Her philosophy was always, “if I don’t have any reason to get up, then why should I.” Her happy place was morning in bed under a soft blanket. She did more work from her phone in bed than most people do in the office.

But today, this sweet text brought a wave of hope. I knew that this was not just her first text of the day, but her first text to anyone since mid-March. Her speech therapist had just told me the day before that they were working on her communication skills and relearning the phone. This was for safety – if she has an emergency, who would she call? Those two small words, “Good morning,” said so much. They told me that she is trying. Following instruction and working so hard to do the simple things that we all take for granted. Tempted to send a long reply of praise, I opted for what she would find most familiar, my standard reply, “Good morning, Sunshine.”

Erica is now walking 300 continuous feet with a walker and climbing 12 steps using both handrails. She is easily feeding herself (and eating way too many Mike and Ikes). She tells me that every action is not physically tiring, but mentally. She has to think hard about every move. She is fighting. But as Erica always has, she is doing it Erica’s way.

Four days into In-residence Physical Therapy, Erica is thankful for the food and her new friends. The food being far more edible than the previous hospital, it actually is very good. Her appetite, enhanced by steroids, has her often requesting seconds. Her new “friends”, the trainers and nurses, have already learned Erica’s quirks, specifically, that she needs two vanilla ice cream cups between dinner and bed.

We already see improvement in Erica’s cognition and mobility. She is able to feed herself, move from sitting to standing on her own (with balance assistance) and is taking longer strides while using a walker. Her conversations are much more complete – usually including a statement about how badly she wants to go home. But she’s not ready yet. More work to do. Ten more days.

Six nights in the hospital. Five days in a ten by ten beige room waiting for a doctor to tell you if your worst fears are valid or not. This room is stripped bare and will reduce anyone to their lowest emotional point. Only thirteen channels on the TV projecting sound from tiny holes in the same remote that has the nurse call button. In the corner are two stiff chairs that discourage guests from staying too long. Conversation is limited to Erica’s condition unless someone intentionally changes the subject. This is the most uninspiring room for someone who needs to be inspired. It is easy to forget the comforts of life when everything around you reminds you how fragile life really is. It’s a wonder anyone ever gets better in the hospital. I’m just the spouse and I feel worse for being here. Erica is going stir crazy and just wants to be home. I guess this is a good sign because her energy and awareness are up enough to get pretty emotional about it.

Unfortunately, Erica is not going straight home. She will be transferred to In-patient Physical Rehabilitation Care at another hospital for the next two weeks. This is definitely worth celebrating because it means that the doctors and therapists believe that she can get better. But it also means that she will have to work and want to get better. Erica is weary and I feel it with her. The past two months have been a roller coaster seeming to have more downs than ups. And the past two years have taken a toll on her body. We are learning that all of the radiation and medication is having a lasting effect on her brain. Her treatments moving forward will need to be carefully coordinated between the radiation and medical oncology teams. But we can praise God that currently, the treatments have been very successful in fighting the tumors in her brain. Many are gone or reduced to a size so small there is no immediate concern. This will allow Erica to focus on physical therapy and getting strong again.

We praise God that the tests that she was hospitalized for have come back negative or normal and that improvement (should) start tomorrow. We thank the many friends and family that have stopped by. We cheer shrinking tumors and renewed hope!

Back in the hospital, that is. Another multi-day, waiting for tests, results and treatment plans. Another round of doctors we don’t know.
We know we are in the best hands, but this place is draining. Erica does say that being here makes her feel safe (Yay!).

We are here with renewed hope. After consultation with Erica’s radiation oncologist yesterday, who also consulted with our medical oncologist and neurosurgeon, it was recommended that we come in for a series of tests. The specialists agree that Erica’s sudden drop is not typical of the slow cognitive decline from radiation. Recent PET, MRI and CT scans are not showing progression that causes immediate concern. In fact, we are celebrating that the body is clear of any evidence of disease and many of the tumors in her brain have actually decreased or disappeared! Miracles and Medicine!

The leading theory is that the cancer may have effect on the ventricles and the pressure of the brain fluid. A lumbar puncture (spinal tap) will help determine this. Unfortunately, we were not able to schedule that procedure today, so we will continue to wait and celebrate that we still have options.