A Shadow
I was invited to visit Agnes Vanderburg’s culture camp on the Flathead Indian reservation in western Montana. Agnes insisted I stay at least one night. It was 1986, and I met Agnes through my position with a non-profit organization working with Montana's tribes. Years earlier, Agnes and her late husband started the culture camp to teach the “old ways” of her Salish people. She was worried that the younger generation was losing important aspects of their culture, like tanning a hide, building a sweat, beading, the Salish language and medicinal uses of plants. The culture camp was open to everyone, not just tribal members. People came from as far as Germany to stay there and learn. The only requirement was that you bring food to share, help with housekeeping tasks and learn something of the old ways.
It is a 10-mile drive down a dirt road off the main highway to Agnes’s camp, located in the woods along a creek. Agnes offered guest tepees for me to use for my stay, but I was apprehensive about sleeping alone in one. Mainly because when I first arrived, Agnes had her grandson take me on a tour of the camp, and I kept seeing snake after snake, almost stepping on a few with my strappy sandals. I imagined that while I slept on the ground inside the tepee, any snake could easily crawl under the canvas wall, so I thanked her but said I’d be more comfortable zipped inside my tent. Agnes was curious about my fear of snakes and asked how many snakes I saw and where, as though it were unusual to see them. She told me to set my tent up next to her little camper trailer.
That night the moon illuminated the trees, casting magical shadows on my tent, and I fell asleep right away. At 2:30 am, I woke up for no reason, but to see the shadow of a tall lanky man in a cowboy hat walking around my tent. Dear Lord, this is what I feared most on my travels alone, getting murdered! I grabbed my Swiss army knife and clutched it tightly to my chest, thinking I’d be ready to go down fighting. I slipped, deep down, into my sleeping bag and waited, slowing my breath to stay calm. At 6:00 am, I woke up tangled in my bag and remembered the cowboy. Did it happen, or was it a dream? I zipped my tent open to see Agnes with her bandana and gray braids sitting on a bench in the door of her little trailer smoking a cigarette. She had all the burners of her stove on for warmth. “Want some coffee?” she asked. I sat beneath her on the step of the trailer and told her how restful my sleep was until I woke up to see the shadow of a man walking around my tent. “What direction was he walking?” she asked. When I tell her, she says, “I know what you’re talking about, it’s a spirit who lives here. Some people have seen it. It’s harmless.” Then she laughs and tells me the story of a big, proud warrior who was staying in the camp and saw the same spirit walking around his tepee. The warrior got so scared he packed up and left in the middle of the night, never to return. I could tell she was impressed with me, and I ended up staying an extra night, just to be close to her. I didn’t see the shadow of the spirit again, but the experience of that first night is one I have never forgotten.
Lately, I’ve been recounting my experience with the shadow spirit and remembering how terrified I was. My instinct was to hunker down with my Swiss army knife and be ready to do battle. That shadow spirit is now my metaphor for cancer. The beginning of my journey was by far the scariest; the cough, the brutal medical procedures, the diagnosis, the grueling six-hour surgery, the two-week hospital stay, chemo and then fear of the unknown. It all happened so quickly. Once I healed from the surgery and stopped being afraid of chemo, I got into the hunker down mode and lived to beat this cancer. Every day was a challenge, but even more so several months after the surgery, when I happened to read that there is a 90% recurrence within two – five years for Stage IV. I was devastated. I had believed I was fighting to end my cancer, and then I would get on with my life. I would go back to work, go on as usual, retire after 2 years and travel across the world, just like we planned. It was the first time during this journey that I felt defeated. The news was hard for me and everyone in my life to hear. Two years, that’s not a lot of time.
After a few weeks of sorrow and crying, I picked myself up and made a decision that I would be in the 10% of those statistics. I would find out exactly what recurrence meant. Did it mean I would never be in remission? Will the cancer return to any organ? How will I die? Will my death be prolonged and painful? What do I need to do to prepare? What is important to me if I only have two years? What are my wishes for burial? These questions were endless. I tried to talk about this with family and friends, but it was understandably uncomfortable for them. The best proactive decision I made was to start using Kaiser’s Palliative Care Department. I thought palliative care meant the end of life care, like hospice, but I soon learned that palliative care “focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.” The effects from chemo are the worst the day after an infusion and lasts 3-4 days. I hate taking pills, so I suffered through those days. After my first appointment with Palliative Care, I was given a regimen of pharmaceuticals with my goal to replace them where possible with medical marijuana. It worked, but it was a full-time job taking meds around the clock. Then I’d have to spend more time managing the side effects of the pharmaceuticals, and once I started to feel better it was time for another round. The regimen worked, and I could walk up to 6 miles a day and have a fairly good quality of life.
My second Palliative Care appointment lasted two hours and gave me time to ask every question I had about the 90% recurrence statistic. I hit every question head on, and my doctor answered each one honestly and in detail. He and others told me that the numbers were just that, and it all depends on the individual. My age and my prior good health would help me be in the 10%, but I was stuck in the statistic. I was advised to focus on the positive and make each day count, as we all should. That 2-hour appointment helped me gain the acceptance and peace I needed to take on the next phase of my battle: maintenance of remission and being in the 10%. I will need to be able to identify changes in my body or symptoms that indicate the cancers return. Hopefully, we’ll catch it before it requires surgery, and I’ll just undergo chemo, again. I never thought I’d see chemo as my saving grace!
Afterwards, I realized that 90% of my stress was work-related, and I decided to retire. Next, rising to the top was spending time and making memories with Scott, our pups, family and friends. Now I am trying to find a holistic approach to my health; what do I need to do to keep this cancer away? How do I live and maintain a stress free, positive life? It’s a bit overwhelming, but I am on a quest.
Nothing humbles, or changes one like cancer. It’s been four months since my last chemo, and I continue to be in remission. My hair, eyelashes and eyebrows are back. I know this cancer is a shadow that will follow me to the end of my life. Like the spirit shadow, I sometimes think this was all a bad dream. Each morning when I wake up, I breathe and feel gratitude for the wonderful life I have been given and for all who are in it. I’m not sure whether I will continue this blog, I may. However, it will most likely be filled with whole food recipes, use of natural medicinals and information on techniques that will help in the maintenance of remission. On the other hand, I may have more stories to tell about all the adventures I’ve had in my life that may include many of you!
Agnes Vanderburg, 1986
