Why We Run: Erich’s Stage IV Melanoma
No one walks alone: Erich’s wife share’s her story … “There are several lesions on the brain, some of which seem to be bleeding.” The ER doctor and his staff stood on one side of my husband’s gurney, me on the other. Erich prone in the middle. The intensity of the statement collapsed over the tiny room like a blanket soaked in freezing water. I looked at Eric who looked at me with a blank stare. It was the morning of Thursday, September 2, 2021, a beautiful, cloudless day. The few days prior, Erich complained of feeling “off”. Working in construction and havingworked hard the past several weeks might have had something to do with it. Or was it anxiety? He’d had panic attacks before and surmised the symptoms might be an indicator of their return. He just couldn’t be sure and wouldn’t it be best to get checked out he said.
I focused on the doctor who delivered the statement. “So are you telling us he is going to die?” I squeaked the words and assumed he would confirm my question. The words ‘brain’, “bleeding’, and ‘lesions’ were used in the same sentence. What other outcome could there be?
Hours prior, I dropped our seven-year-old son off at school, returned home, picked up Erich and drove to the ER. We did not know we were driving toward a stage IV cancer diagnosis or that Erich would have a subsequent two-day stint in the intensive care, a biopsy on a soft tissue mass in the chest, and mapped for a radiation mask. We did not know that he would go through 14 whole brain radiation treatments as an outpatient. We had no clue Erich would traverse myriad complications over the next several months that would bring us to our knees in prayer. We did not know that our lives, and the lives of our son, our family, and our friends would be forever changed. Fractured, and in many ways irreparable.
“No, I’m not saying he will die. However, we need to get Erich up to the intensive care floor so we can do more tests and see exactly what is going on,” explained the doctor. He was professional. To the point. I took that as my cue to do what I do best in crisis mode. Move. A quick kiss to Erich and I was out of the ER bay, moving toward the ER waiting room, sobs bubbling upward through my gut, into my heart and out my mouth. I willed them down until I got to the lobby where I rushed myself to a private corner. Sunlight poured through the floor to ceiling windows as I made the first call to my mom. An SOS. Mom, please come meet me at the ER. Erich is not okay. Things are NOT okay.
Next, I called Erich’s parents in Florida. Please come. Erich has lesions on the brain and they are doing some tests. Hurry. And then a call to his sister, and to then my boss who, over the phone, I sobbed, “What am I going to do about Aaron? He loves his daddy so much!” The waves of despair could not be held back any longer and he was the recipient. I didn’t know our future. Just that it looked bleak and gray and damp. The shattering of our lives in mere moments was nearly incomprehensible.
I went back to Erich’s bay and waited until my mom arrived. My sister followed. They were stricken with worry. They too wondered what was to happen. What HAD happened? The next few hours were a flurry of moving Erich up to intensive care, making phone calls, and making lists of next steps. Praying. We met with a radiologist, neurologist, internist, and oncologist. We were now part of a group we wanted no membership.
COVID-19 protocols brought no relief to the afflicted who wanted nothing more than to huddle together in solidarity. Physically to cling to one another in the hopes the fractures they sustained from a fresh diagnosis would hold together just a bit longer. There was nothing for me to do but to pick up our son Aaron from school that day and take him to his scheduled baseball practice. It was 6:00 pm and I needed to head coach my son’s team. I needed to keep Aaron’s schedule as normal as possible. To ensure he was not frightened. That he was protected from the adultness of it all.
“Where’s daddy,” he asked. He knew something was amiss.
“He’s staying at the hospital for a little bit so the doctors can help him feel better,” I said. And so we played baseball and laughed and had fun as kids should do. This was the first night of our new life with cancer.
What were we dealing with? Knowing it was most certainly a malignant cancer, our first thought was melanoma. Erich was diagnosed with the deadly disease in the winter of 2013. A mole had been removed along with an infected lymph node. We had the best doctors. The best care for five years. Bloodwork and scans like clockwork. Experts declared he was NED (No Evidence of Disease) and the wall of fear softened to a veil. Aaron was four years old and we thought we hit the jackpot. Gifted with a bill of good health, a beautiful child. Nothing to worry about. But that is not how melanoma works.
The official diagnosis of melanoma wasn’t made until the following week in which we breathed a sigh of relief. We thanked God that it wasn’t lung cancer or another cancer. We knew melanoma. We were familiar and had doctors we could lean upon who knew us. We hated we were back to living this nightmare we thought we had woken up from years prior. How could this be? We implored each other to come up with an answer. There was none to be had. Melanoma is a sneaky, insidious cancer that you cannot let out of your sight. No matter how distant it may seem.
Here we were. Thrown again into the gauntlet against cancer. And damned if we weren’t going to fight with grace. God never became so up close and personal as He did in those first few days. In the days that followed, I launched a Facebook page, aptly named Erich’s Cancer Adventure, to keep everyone informed and upbeat. To set the tone we would not take this diagnosis laying down. We would fight with joy. We needed the emotional support, the prayers, the tethering of humanity. We were not doing this alone and I was going to make sure of it. And we needed to let everyone know that God would hold us throughout the entire process. He would surely mend the fractures, the breaks; put back the shards we waded through.
Erich’s diagnosis sunk in. Stage IV melanoma with metastasis to the brain. I worked to line up a medical team that included Erich’s former melanoma specialist. The first plan of attack included whole brain radiation treatments. Erich attended these sessions as an outpatient. We drove each day to the hospital, parked, held hands as we walked in. I prayed fervently during the five minutes his treatments took. And then we would drive home. Wash. Rinse. Repeat. All the time we wondered what had caused this. Why did this happen? Will Erich, will we, survive this?
Radiation to the brain is not for the faint of heart. The typical reaction of tumors or lesions is swelling. Knowing this, Erich’s radiologist prescribed steroids. The steroids would combat the swelling. Once Erich weaned off the steroids he would be approved to move into the next phase of treatment; immunotherapy. We’d heard this was the cutting edge treatment for melanoma. A combination of two drugs, administered intravenously, would combat the cancer. Beat it into remission. Seemed simple enough.
But the wean off the steroids didn’t go as planned. On September 28, 2021, two days after his last steroid pill, and several days past his last radiation treatment, an ambulance had to be called to the house. Erich’s left side was failing to near paralysis. What in the world was happening?
Erich’s mom was in town and the two of us followed the ambulance to the ER. More prayers. More questions. Scans revealed an increase in pressure and edema so much that it caused Erich’s brain to shift inside the skull by 11 mm. A significant move from previous scans, effectively setting in motion a 42-day hospital stay where Erich bounced from the oncology unit to medical intensive care back to the oncology unit to neuro intensive care, to oncology, to the rehabilitation floor, and back to oncology. How did we manage?
During those 42 days, Erich fought for his life. He was days away from being put on hospice, his oncology team not sure there was anything else they could do. The swelling in his brain just couldn’t be controlled. The term “mid-line shift” became all too familiar and we knew that 1.5 cm was a terrible number. High dose steroids and sodium treatments, which made him incredibly thirsty, were not cutting it. Then a neurosurgeon consult with Dr. B changed everything. An angel. A man who said he would (and did) cut into Erich’s skull with precision and determination to relieve the pressure so that Erich would have some chance at combating this cancer. He told us that given Erich’s age and relative good health, and his understanding of the efficacy of today’s immunotherapy treatment for melanoma, that it was damn well worth a shot. He was taking a chance on us and we on him.
On October 9, ten days after being in neuro intensive care, Dr. B removed three of Erich’s most bothersome tumors. The wait was agonizing. Done on a Saturday, we were the only ones in the waiting room. Spread out. Quiet. Not a peep over the four hours Erich was in surgery. Tensions were at their peak. And then finally Dr. B came out and talked to us about the success of the surgery and recovery to be expected. I wanted to shout and scream and give hugs to Dr. B but I controlled myself. By no means were we out of the woods. We were just closer to seeing the tree line. One tumor, near the cerebellum, and about the size of a plum (mostly clotted blood), was pulled out, immediately relieving pressure. Two others, also of significant size, were also removed.
Immunotherapy could not begin until Erich proved he could tolerate being off steroids. Would he be able to do it? As his strength began to return, Erich was moved from oncology to the rehabilitation floor. Being in a hospital bed for days on end had atrophied his muscles to the point of restricting independent mobility. He needed to move, gain strength, get off the steroids so he could finally start immunotherapy. Erich was getting stronger. And the steroids were being cut down. All seemed to go in the rightdirection. Until the steroids stopped and Erich’s swelling returned. It felt like we were piloting a car with half an engine and three square wheels. It was all so hard.
All the while we prayed. Friends, our family members, our church family. I prayed in the parking lot of the hospital every day – urging God, if it was His will, to protect each and every person in the building. Doctors, family members, caregivers, friends. Patients most of all. A few of the days I looked to the sky and followed the path of medical helicopters as they made a move to land on the hospital rooftop. We were not the only ones suffering a tragedy. I fell to my knees on a daily basis. Cried in my car. Screamed at the top of my lungs when I knew no one was around. Listened to Christian music with fervor. Soaking up the verses, the songs speaking to my soul that everything would be okay. God has got this they sang. I believed it as I hugged my son every night in bed. Worried for his little heart that had to grow up so fast.
Erich could no longer participate in rehab. His latest scan showed the melanomas in his brain continued to have edema around them. The only thing to do was a round of chemotherapy to help combat them and shrink them down enough to where he could wean off the steroids. But would it work? We had
blind faith at this point. Let’s try it all. Throw it at the wall and see what sticks. Chemo is not normally in the “toolbox” for melanoma treatments. But his oncologist implored us, “Let’s give this a try.” The alternative was to do nothing. Another brain surgery would simply prolong Erich’s recovery and without systemic treatment, his chances of recovery would be minimal.
On November 3, 2021 Erich received his first and only round of chemotherapy. It took three days to administer and was followed by a shot to boost his white blood cell counts back up. Again, the goal was to shrink the melanomas down (which tend to bleed) to the point where Erich could tolerate being off the steroids. This HAD to work. Had to. We were spent and needed something good to fill our seeping emotional tanks.
Anxious to get him out of the hospital and home into comfortable surroundings I pushed to have him discharged. Erich came home on November 9, 2021. My heart swelled. The only thing I prayed for was for Erich to spend time with Aaron and for Erich to not be in any pain. And those two things were being accomplished. Bringing a disabled patient home from the hospital is no small task. A social worker connected us with the area of the hospital that would provide home health products. A hospital bed, commode, walker, wheelchairs. We needed sheets. Extra pillows and blankets. We needed help.
Erich’s parents were present and involved from the beginning. His mom, a retired emergency room nurse, proved invaluable. They were here for the duration of his hospital stay and came back frequently to help with home care. Friends provided incredible, belly filling meals and soul filling prayer. They gave money to pay bills and gift cards for groceries and restaurants for those times when we had zero energy. The outpouring of support is what I can only describe as love in action. This is how God moves. How he operates. He says, you may be in the thick of it, but you will NOT be alone.
However, there was also high anxiety and a need for Erich’s mom to be in control. It proved stressful and later, when it was most important for us to rally around Erich as a solid unit, everything crumbled.
Erich’s wean from steroids after chemotherapy was successful. A follow-up scan in mid-November showed a 10% decrease in tumor size. Erich’s oncologist, while pleased, encouraged Erich to consider one more round of chemo before moving to immunotherapy. His worry being that the immunotherapy, which also causes a swelling response, would be too much for Erich to handle. That we would end up going back to square one.
It was a choice Erich had to make. And he chose to move forward with the therapy. His first IV infusion took place on November 22, 2013. Over three hours a combination of drugs streamed into his fighting body. To say we had arrived now after all that Erich and our family had been through was momentous. It was incredible. Many patients suffer extreme side effects from these treatments. Liver damage. Colitis. Thyroid and pituitary destruction. I thank God Erich had experienced minimal effects. He remained weak but I was hopeful he could get stronger.
For a moment, our fractured life appeared survivable. Erich improved with immunotherapy and we thought, yes! God is good. He is answering prayers. We are the lucky ones. However, our steadfastness did not reveal two subsequent brain surgeries, multiple trips to the ER, and a one-month stay in a nursing home, days of targeted brain radiation and almost all loss of physical abilities. It did not allude to the disintegration of family ties with Erich’s mom, dad, and sister. Our unfailing belief that God would fix it all belied the reality that in coming days I would; lay beside my husband as he took his last breath,
cradle my son and tell him his daddy was gone, or that I would bury my almost 49-year-old friend, confidant and copilot in life on a beautiful day in October. My caregiver spirit was broken. Relieved of its duties, vows fulfilled.
It has been nearly a year since Erich died. A profound sense of loss and grief sneaks up at dusk when our corner of the world is quieting down for sleep. It nestles beside me in the early morning, in the call of cardinals and in the memories that flood my mind of Erich working around the house and in the yard. He loved being outside. He loved his boy. He loved being a dad. As much as he suffered during his illness, I know that he would do it all over again if it meant fighting to stay even a moment more with us. To give one final hug, one kiss.
Witnessing Erich suffer with terminal cancer is not an ending we imagined when we stood face to face in a church in July of 1999. The breaks, cracks, and splinters in this earthly life are infinite. So too is my infinite belief and hope in God. I am broken and grateful. Because He will sand, smooth, and make us new again.