I have not written a post in a year, and have debated on what to say, how to say it. A friend suggested I start with telling you my story of the past year. So here it goes……
December 4, 2014
6:00am. I could see from my bed, through the curtains, that is was snowing again. How many times had it snowed already this season? I didn’t know; all I could concentrate on at the moment was the curtains. They had the same floral pattern as pillows on our couch 22 years ago. Why did I have those pillows? The floral pattern seemed nothing like me. But then again, nothing seemed like me these past three weeks.
November 10, 2014
It was a cold day with the smell of winter in the air. Nelli and I had our usual run to a nearby fishing pier in the morning. Our little ritual: we run, we sing along to the iPod (well, I do….she just looks embarrassed), and at the fishing pier, we stop to watch the water ripple in the wind and enjoy “our time”.
There is just no other way to start a day.
That afternoon, I had an appt for an MRI. At age 47 with a candle business, it wasn’t surprising; the aging process was catching up to me through back pain. I had hesitated to even call the doctor, but, I had been putting it off for too long. And it was November, my busiest season so I needed relief to get through the next two months of holiday orders.
At 4:30, three hours since my appt began, Tom and I sat in a back waiting room while the tech finished transferring my images over to my doctor’s office. We chatted about “what’s for dinner” and shared a box of candy Dots. Then my phone rang.
It was my doctor speaking another language. Or was it the Xanax medication for the MRI playing tricks on me? I only caught the words, “Cancer”, “Tumor”, “Neurosurgeon”, “Immediately”. I don’t think I replied right away, because she said those words again. I was suddenly outside of my body watching this scene play out. I could see us both racing to the car and hearing one of us saying to the other, “it’s a mistake; it has to be a mistake.”
With that, the snow started falling.
Another Minnesota winter was here. Right on time.
We made it through rush hour traffic to the neurosurgeon’s office; he made time to meet with us before his next surgery. We were ushered in right away, and in seconds found ourselves with a man in scrubs and a white coat. He was speaking, but I heard nothing; I was too busy staring. There it was. In the middle of my shoulder blades. A large mass that was bulging from within my spinal cord.
I stood in terror and disbelief. Thankfully Tom was absorbing what was being said, but he also needed repeating in his own moment of disbelief. We sat down in the neurosurgeon’s office, and I recall that I hadn’t even caught his name through my numbness. But there we sat for an hour talking about the possibilities of what this was; he was 99% certain it was a slow growing cancer tumor that needed to be removed sooner rather than later. We discussed all possibilities of what spinal cord surgery could mean from paralysis to a full recovery.
YES! Full recovery…lets go with that. After all, I told him, I had a business to run, and this was my busy season. So if we could hold off until January that would be great. (clearly the Xanax for my MRI was still working it’s delusional magic)
SOONER rather than later, he repeated.
In the meantime, given my complications with endometriosis for over 12 years, he would be presenting my case to the hospital’s other chief’s of specialties and explore other possible tumor types the following day. He assured us that whatever it was, he would see me through this first hand.
We left the offices and sat in our car in silence. Then all numbness gave way to fear and I broke down (just the first of many to come). How could this be happening? How will I tell my parents? My brother? Who do I call first? What do I say?
November 10, 2014 was the day everything changed.
Needless to say, I cancelled and rescheduled everything I had on my calendar for the coming weeks. The next two weeks between diagnosis and surgery were hectic as we prepared to hand over my business to another local candle company to pour my website and retail orders, and to friends to make deliveries to retailers and Fed Ex. Thankfully Tom is already up to speed on much of my day to day, but he also needed some training on my website and order process.
In between the rounds of more tests with more doctors, I spent time making my last deliveries for a while to my local retailers and let them know what was happening, and assured them business was continuing to move forward for them. Each time I relayed my story, I was met with hugs and tears of genuine concern and encouragement. Each time, I was left feeling more loved; and a renewed confirmation that I was more than just a supplier to my retailers. But like family to them. I couldn’t be more grateful for all of their support.
While I was holding up pretty well as I shared my story with family, friends, neighbors, ….. my private moments were filled with anxiety – and a lot of tears. Nelli and I continued to run as much as we could, and she was always good to lick away the tears as we cuddled on the fishing pier and watched the water’s ripples move in and out. And as Tom and I worked across from each other in our home offices, we shared information we found about my possible tumor so that our next meeting with my neurosurgeon could be as informative and efficient as possible. We became medical researchers on a mission.
Our evenings were filled with discussions about what “this” could be, what this all means to “us”, how will we handle this latest hurdle life has put in front of us. Then in the dark, when we couldn’t sleep, we just held each other and promised it would all be ok.
November 25, 2014
5:00am. We arrive at Abbottt NW Hospital. Surgery was scheduled for 8am, and estimated to be 4-6 hours long. It was two-days before Thanksgiving, and with our families both back in St. Louis, we assured them we would be fine; we would call them when surgery was over, and FaceTime with them on Thanksgiving. No need for anyone to travel. Plus, Tom would have some company in the waiting room with our friend whose father was having surgery the same morning; not to mention, another incredible friend who took the day off to bring Tom donuts, and sit with him for a while. It was these seemingly small acts of kindness during those weeks after diagnosis that held us up and kept us going. To us, they were all HUGE! We seemed to have an army of supporters all around us making sure we remained strong for the fight ahead.
Surgery was 8 hours. It was more complicated than anyone could know until they were inside my spinal column. The tumor, an intramedullary tumor, had grown from inside to outside the spinal cord and coiled itself around. When I woke, I was surrounded on all sides with my doctor and medical staff; my body was in trauma from the invasive, complicated surgery, they explained. No nerves were severed during the surgery. GOOD NEWS! Then I was asked if I felt their sharp instruments against my legs, my foot. No, I couldn’t. Could I move my toes, my foot, my legs? No…..I couldn’t. But I wasn’t to worry; this was expected and in time this would all return.
Surprisingly I never felt an overwhelming fear that things wouldn’t get better. I always felt a sense of deep faith that I would return to my normal self again. And it was a comforting faith that Tom reassured with our mantra: We Got This.
After a week in the hospital, I spent the next month in inpatient rehab at Courage Kenney Institute at Abbott NW Hospital and it proved to be another test of my own inner strength and resolve. Inpatient rehab was a stark contrast to my bright hospital room with the large window overlooking downtown Minneapolis. No, this place was a dreary brown and my window had curtains with an old floral pattern from my past and looked out to a cinder block wall with a painted mural of a lake scene (no doubt just one of the 10,000 MN Lakes). I was greeted by the coordinator on my case and given my schedule of therapies, as well as book for classes I would be taking by the Christopher Reeve Foundation on paraplegia and paralysis. My spirits took a deep dive in this moment. Suddenly, reality was sinking in. I really couldn’t walk. And there was no guarantee on what my progress would be from here. “How did I get here? How is this my life?” These would be questions I asked myself a lot in the days and months to come.
I suddenly had a “new normal” and that consisted of learning how transfer in and out of a wheelchair. I was also learning how to walk with a walker, and transfer back to a wheelchair. Before I knew it, I was wheeling all over the place ready for the Olympics. Unfortunately, a nurse had a better idea; my enthusiasm to recover fully got the best of me when I decided to use my walker unsupervised. I barely made it across my room when a nurse strapped me back down into my wheelchair and turned the alarm on. One motion to get up again, and the whole floor will know about it. I am now a dog with a shock collar. Another low point. Adding insult to injury, the team in charge of my rehab extended my stay. I called Tom in tears of frustration. If I could kick, I would have done some serious damage to that wheelchair.
Then Tom reminded me, We Got This.
As the weeks passed in the rehab center, I found comfort with Barley, the therapy dog on as many occasions as I could. In our first session, I simply sobbed into his fur. The pain of not seeing Nelli in weeks overwhelemed me; and not knowing when I would see her again made it worse. As dogs do, Barley was an empathetic listener as he rested in my lap and let me cry it out. Yes….Dr. Barley had the healing touch for sure.
On a the bright side, I was making progress in my physical and occupational therapy. I couldn’t help but find inspiration in others tackling their own issues with various forms of paraplegia and paralysis. There was a teenager paralyzed from the neck down from a dive into shallow water. A middle-aged women injured, also from the neck down after a snowmobile accident. The college student battling crippling seizures that left her with a loss of mobility and strength. All of us became fighters in the same war on muscle strength, mobility and nerve regeneration. We would compare stories of our current struggles and our goals once we were out. For all of us, the gym became a place of constant frustration and inspiration. It was hard to watch others fight so hard knowing their recovery would not include walking again, but only upper body mobility or some other limited recovery. But when you saw someone move past their personal best, you couldn’t help but feel their sense of accomplishment ~ and a renewed drive to beat your own personal best the next day.
The coach in charge of my fight was Eva, my physical therapist. She spent hours each day drilling into me the finer points of walking (do not take walking for granted; it’s a complicated process). In between strengthing exercises and training both feet to move in a forward fashion, we also spent our hours talking about what else? Dogs.
In the final week of my stay, I was moved to another, larger room and Tom was able to bring Nelli for visits. I cannot begin to describe the immense joy I felt in seeing her; I wanted so bad to leap out of my wheelchair and just run to her. But she beat me to it ~ nothing beats the sheer of unbridled enthusiasm of a dog reunited. It didn’t take long for Nelli to resume her place in my lap in my hospital bed. While I could not feel her laying in my lap, just to have her there, was the medicine I needed. To be together again, the three of us, felt like home was truly around the corner.
Yes…in a week I would be back home just in time for Christmas; and my brother would be visiting from Seattle. The only family we would see over the holidays, and as my only sibling, I was overwhelmed that he was visiting as his visit brought a true sense of family love I needed. And with it, a feeling of hopefulness now…..the light at the end of the tunnel was becoming clearer.
It’s now a year later. I still have little feeling from my waist down; it is more neuropathy than anything else (squeezing, burning, swelling, pins/needles). But after a month of inpatient physical therapy, and 8 months out patient therapy, my mobility is greatly improved. In the last year, I have been able to ditch the wheelchair, walker and finally the crutch. I go for walks with Nelli, I drive, I can now help around the house more, and starting to manage more of my business on my own again. I have been lucky to be married to man who is the very definition of the word “supportive” from words of constant reassurance to keep our faith strong, to video taping therapy sessions so that we could review my areas of weakness, and coaching me at home to improve my unsteady balance (so that one day I can get back into my heels). I have also been lucky with my team of doctors, the best of the best in Minnesota, and while they all reassured me they would do everything they could for the best possible outcome, I promised I would do the same for them; I would be their Rock Star. And despite some low points along the way, so far so good.
This isn’t to say I am out of the woods. That this is not the end of this story. My tumor was a grade 2 Ependymoma. It’s a rare cancer of the central nervous system (CNS) that is more common in children as brain cancer; and more fatal. Its rare to be diagnosed as an adult, one in a million, to be exact; but our chances of recovery are far better. It’s an uphill climb for all of us, some steeper than others. I’m one of the lucky ones. While mine was benign, there is a chance of reoccurrence anywhere in the CNS, so I go for regular MRI’s and check ups with my neuro-oncologist; regular reminders of anxiety; but celebration when all is still looking good.
I don’t know where this journey is taking me yet. I have been so focused on recovery of my health and regaining my old life in whatever bits I can, I have not come to understand yet what this all means for me moving forward. Life turned upside down that November day. I didn’t know what might happen to me, what might become of me, of my business, of my relationships; how this would change things. What I found was strength; stronger bonds and deeper relationships with everyone in my life. I also found other “survivors” of this same rare tumor type; two of the strongest women I have met have fed me the inspiration I have needed to move forward. Tom and I both feel amazing amounts of gratitude for the community we have become a part of here in Minnesota, and our far away friends and family.
We couldn’t be more grateful for the countless acts of kindness we experienced…to list all of them would be impossible; we were incredibly blessed at every turn this past year, and you should all know Tom and I are here for you in all the same ways.
As I said, this is not the end of this story. When Maggie passed away, I was lost and looking for a life with more meaning. By making a memorial candle for myself in her honor, I found what I was meant to do.
And now, I am again staring down a path of opportunity. Those floral curtains took me back in time; they were a reminder of the past, and all I have overcome in the last 22 years. While I have said that I just want my old self back, to aim so low would be a disservice to myself, and all around me. I look forward to continuing this journey and sharing it with you; and hopefully providing you with the same support and encouragement I have received this past year.
Because, no matter your struggle, know that together, We Got This.
For more information about spinal cord tumors, specifically ependymomas, visit: http://cern-foundation.org