My new reality

Chapter 1

“Hi. I’m just calling to talk about your x-rays. The radiologist saw a spot that we would like to follow up with. It’s most likely nothing to worry about, but let’s get an MRI just to rule anything out…”
Wow. How your day can just turn in an instant. It was beautiful, sunny, clear weather in late September. I was enjoying a walk through town, checking out the end-of-summer sales. The mountains in the distance rose over the shimmering lake. People were still out paddleboarding and kayaking. I had just played golf that morning, swam that afternoon. The lake water temperature was getting cool, but on this hot day it was refreshing. Of course, I’d come in when the MRI was scheduled. Of course, I’ll speak with the doctor after the results come in. This won’t be a problem. This won’t interfere with my plans to enjoy my retirement, my life. This…oh damn it!
How is it your mind immediately starts running through the scenarios, starts making plans, runs on overdrive? I just want to not think about this until the results come in. It is likely nothing. Besides, this can’t happen to me. This happens to someone else. Someone I can support with a casserole, or a visit, a group walk or a donation. I’m getting distracted, upset, although reason and logic tell me otherwise. I’m worried. But there’s nothing I can do, for now. Wait, and see.
I went for an orthopedist visit when my hip was aching, bothering me enough in the morning and my attempts at stretching and yoga weren’t making a difference. I had done some snowshoeing over the winter and had tried a mountain ascent with my brother in law. It was exhausting and it took me a few days to recover and then my back muscles started bothering me. Self care didn’t work, so onto the orthopedist for a checkup. The x-ray upon first glance revealed nothing, the diagnosis: bursitis, not unexpected. I am 60, now, after all. My husband and kids threw me a wonderful surprise party. I biked 200 miles in 4 days just 2 months ago with my best friend Tina to celebrate our shared milestone birthday. You’d expect some aches and pains at this point, wouldn’t you? After several physical therapy visits the ache was considerably reduced. I kept up with the stretches, I even started jogging again, although my knees were not happy. Oh well, I’ll stick to golf and volleyball and swimming. But there still was that niggling feeling in my hip. Is it something? Is it paranoia?
I played volleyball poorly that night, distracted. The college team I coached laughed and teased me on my errors. The young women on the team were enthusiastic and played with an undisciplined ease. They were unaware. I want to be them again. I want to jump and fall and laugh and do it all over again.
Greg, my husband of nearly 40 years, was out of town. I called him later to talk and we agreed it’s likely nothing. How could it be anything else? He, after all, went through a scare 20 years ago and his bone scans were notoriously inaccurate, so this could be a similar situation. Of course. Of course.
I stayed up late watching TV so that I could be tired enough to fall asleep right away, taking my mind off the constant thinking. While onscreen the two cops were interviewing suspects in their British accents, I started the internet searching thing. You know, symptoms, diagnosis, prognosis. I worked as a cancer researcher before my recent retirement. I can read the journal articles and interpret the data. I don’t have any symptoms other than a spot on an x-ray. Certainly I am not losing weight, I don’t have swelling, fatigue, shortness of breath, nothing. Nothing. And then there goes the mind again… Please stop!
My older sister Tricia passed away from cancer 2 years previous. She was 62 and healthy until she wasn’t. There were no symptoms until she became winded, then she fractured her pelvis walking. Walking! Her breathing over the next couple of months became laborious. It was unexplainable and vague. We discussed congestive heart failure, the doctors investigated Lyme disease, old age, whatever. It was September. By Christmas they had diagnosed cancer, probably endocrine in nature, fueled by hormones so her lab tests indicated. Chemo, testing, immunotherapy, then she was gone by July. No primary tumor ever identified. Shocking and sad.
It is September, the same month Tricia started showing symptoms. I’m scared. I know too much. I try to be positive. I will be positive. I just wish my brain would turn off so I can be ignorant and trusting. I have faith, but do I have enough? Would saying a rosary calm me or help me? I start thinking about actual cancer warriors, men and women I know or have heard of, who have actually faced the dragon and fought, some winning, some losing. Is this how they started? Do I have the fortitude and grace to fight like they? Tricia did. She never complained, she smiled through the fatigue, received visitors and phone calls with patience. She just fought and fought and fought. And then she lost. She had support, medical and family and financial. But it wasn’t enough. Can I be as gracious and calm as her? Already I know I am not.
Then my next question is: do I talk about this with someone else besides my husband? It would worry the kids and my family. It would seem attention-seeking with my friends. It’s too early. There’s likely nothing happening, nothing to discuss. There’s no data, no information. As a scientist, you can’t work without data. This is driving me nuts. I need data. And patience.

Chapter 2

I had always wanted to write a book. I told everyone I would, hoping it would inspire and motivate me. I read a lot, even more now that I am retired. I get my love of reading from my mom, although I don’t cheat and skip to the last chapter like she does. I savor the story, rereading particularly lovely phrases and wondering how someone has the imagination and vocabulary to combine words in such delicious ways. How do you keep the story interesting throughout? Are there enough stories for all the books in the world? Can I come up with one? Would anyone read it and then, would they understand what I’m trying to say? Since retirement, words fail me now more than ever. I’m not on my toes all the time, trying to overcome imposter syndrome, trying to measure up to or above everyone else as I did when I was working. Now I wave my hands about, throwing out suggestions and clues to indicate the word I am thinking of, an everyday game of charades. It’ll come to me eventually, but usually I have spoiled the conversation at this point. It’s not Alzheimer’s. I have come to realize that I think too fast and anticipate too much. I’m already thinking about what I’m going to say afterwards, after I finish the current sentence. But then I forget what I’m currently saying. Which is weird, since I tend to think that I really don’t talk that much, so what am I doing planning those next words and forgetting the ones at hand? I’m a product of a large family, 7 children and 2 parents and lots of cousins and aunts and uncles. Every photo of my youth is peopled by multiple children and stodgy women in housedresses and older men in fedoras, everyone smiling while squinting into the sun. At some point I think I may have given up trying to get my voice heard at the dinner table and started listening to everyone else. Who wants to hear me anyway? Are my thoughts any more important than the next person’s?
I guess I should take a writing course but like everything my husband and I do, I’ll end up doing this on my own. Together we built several houses, ran part-time businesses, worked full time jobs and raised two wonderful children. We rarely hired anyone to help, self-sufficient to the max. My kids now support my intent with writing tools and books. An internet search on book writing and publishing tells me it is easy if you can survive the rejections. I started a blog when I retired to practice writing, creating a public journal to keep my friends up to date on my life. Starting the blog was easy, I had lots to share after my retirement: our move, our trips, the books I’d read. My very kind friends responded positively. But lately it seems that blogging is more about bragging than writing. I also realized I overused commas, despite the many admonitions I received in high school English class. In any case, do I want to share this new situation? No, it’s too personal now. And real.
Greg and I retired before I turned 60, he at 62. We had met with a very young financial planner who did the math and advised us that retirement was actually possible. How could this be? What magic did he perform to see into our future? We had worked so hard early on, through Greg’s chemistry graduate degree studies and then our long research careers in science while running a small business. Pre-children we spent our spare time remodeling kitchens, re-investing the profits back into Greg’s part-time woodworking business. I dabbled in ‘lite’ interior decorating on the side and learned how to be more engaging, personable, saleable. Our families and friends supported our dreams, working with us as we built our home. Greg’s father was 70 and still climbed scaffolding, framing the house alongside his three sons. His mother, more frail, swept the wood shavings from the plywood floors. My family and our friends spent weekends with us, hauling plywood, installing windows and doors, digging drainage ditches. The enormity of the project overwhelmed me. Greg advised me to keep my head down and focus on the job at hand, wise words that would serve a lifetime. After 2 years of hard work the house was complete enough and our first child Dan arrived.
My mom and sisters came down to help with the new baby. My mother, having raised 7 children, showed me the ropes. Tricia stayed up all night with me while I nursed Daniel; the three of us watched the moon trace across the dark sky. I stayed home from work for 6 months, rocking and nursing this very hungry, happy baby boy. Greg and I continued to work on the house and yard. Family came to visit and help and life was good. We carried on and then had our beautiful daughter, Christina. Two children, two full time jobs plus full time living. The dream of more children did not become reality: raising children was hard work! But fun, so much fun!

Chapter 3

It’s been a week and finally it’s time for the MRI. Of course the hospital has lost the orders from the doctor’s office. I strode in confidently but in no time became teary eyed thinking I might have to reschedule. I can’t wait much longer, the uncertainty is consuming me. I take matters into my own hands and call the office to fax the orders through, then proceed to the radiology lab. The MRI is located in a mobile vehicle while reconstruction of the radiology suite is ongoing. They wrap and situate and slide me into the machine. It’s a bookmobile for people with health questions, searching for answers in a large metal tube. I have already closed my eyes, not wanting an image of the claustrophobic space. My mind starts racing: why didn’t I put a towel under my lower back for support? I can’t move. What if I sneeze, cough, have an itch? I start reciting common prayers, then midway transition to thoughts of the ache in my knee and back. What should I have for lunch? Breathe deeply, slowly, think of yoga breaths. Maybe the vegetarian place? Hail Mary, full of grace…breathe…how does an MRI work? Something about aligning electrons or protons? Lunch. Not much longer…wait, they’re moving me, oh, further into the tube. Damn. It’s gotta be time, no, not yet. And on and on and on. They finally slide me out. It’s been an hour and 20 minutes, about 20 minutes longer than the technician said it would be. The resolution is very good. But don’t move, the contrast dye is injected and then they slide me in again. This time, I start reciting a rosary. I get about halfway through. The pain in my leg and back is ongoing, I’m so cramped but won’t move. I don’t want to do this again. Keep going. Hold on. And then we’re done, 2 hours of imaging. Are my hips that wide? I’m out and the technician immediately starts removing the IV, the blanket, cleaning up. I’m happy to pull my knees in, roll on my back and smooth out the cramp. I’m off the table and into my clothes, then the technician escorts me out. Is he not looking at me? Is he avoiding my eye? Does he know something is wrong or is he just hurrying to get the next patient in, the next person who is just like me, uncertain, worried, compliant?
Later I hold volleyball practice, but take it easy on the girls. They’re cranky and yet I’m supposed to be the role model. They don’t consider that older adults have bad days, so swept up in their own selves. Their play is sloppy but then they laugh and have fun. We have fun. This is good.
Back home Greg and I have a few minutes before going to dinner at the neighbor’s. He spends his time ordering on Amazon, I am back on the internet looking for ‘sclerotic lesions’. I had glanced at the order that finally came through from the Doctor’s office and there it was, the reason for the imaging. The internet lists so many possibilities, most are benign and yet I am not satisfied. I try each diagnosis on for size. There are some conditions I can live with. I choose those. But now I’m waiting for the followup. And start the psychological roller coaster again. The control freak in me wants to plan, order, schedule, do something!
Tricia went through months of uncertainty. The doctors never determined a primary tumor they could blame. Her cancer went through her so fast, the tumors were everywhere by the time she was diagnosed. She once told me that patients who complain get the best attention and yet she failed herself with her own martyrdom. Our family is blessed with healthy constitutions and high pain tolerance. Was that her undoing, her body failing to signal her, so she could notice in time? Is it mine?

Chapter 4

Today is ‘Before I Knew’ day, the day before ‘I Know Now’ day. Today everything is normal. Tomorrow may be, too. But maybe not. Maybe tomorrow my life will take on a different trajectory. Today I know what I will be doing, tomorrow’s plans I do not know. But does anyone? Everyone wakes up thinking they know what their day will be like, following a plan they have decided is best. But not everyone’s day works out that way. Everyday is a gift, expected yet not necessarily deserved. Our plans are illusions. We are like entropic particles, heading in a direction while random collisions determine our actual trajectory. We’re lucky to bounce around and end up back where we started. And then be able to do it again.
Greg joins me at my appointment. It doesn’t make sense an orthopedist might deliver fatal news based on a random x ray, but many would disagree: ‘osteo’ cancers occur all the time. The Dr. enters the room and indeed, it is nothing. I worried needlessly, the lesion is benign. The relief is palpable and immediately I feel foolish. But grateful. My entropic path is back to normal. So many others, however, are not so lucky. God bless them.

Yesterday we heard of another friend diagnosed. Shit. Shit. Shit. This time, a casserole won’t be good enough. Now I understand. I will be that better friend, I will call and talk and listen and cry and share. Because. Just because.