Life with cancer is “interesting”, as my friend, Rich Caviness, says about sketchy across-country routes. His scale runs from interesting to epic. Epic usually includes some risk to life and limb. This cancer journey is “interesting” by the fact that it has unexpected ups and downs, an epic destination, and a rocky way to get there. I haven’t written much about it because the journey is subject to change and I’m afraid it will have made an irreversible creek crossing between the time I write about it and the day after it’s posted and I have to redirect my readers to a new cliffside ramp along with my wailings about it all being so unfair.

Cross-country routes follow no trails and have no lines on maps. A route is a path you make for yourself between points A and B. When backpacking off-trail with my friends, at least I have someone to argue with over where the best route is or even where the next pass is. I remember a specific time when four of us were stopped for lunch sitting in a patch of dark gray metamorphic rocks rimmed with sedges and low-growing wildflowers. Rick and Caviness finished, got up to continue, and Carolyn and I stayed to finish our lunches at a more leisurely pace. A few minutes later when we hoisted our packs and left, the sky started spitting rain and hail. Our destination for the day was just beyond the next pass. We were already mostly up there. We just needed to traverse a bit more fairly level terrain before one last uphill push.

Carolyn and I got separated in the downpour. While there were no trees to get lost behind, there were Volkswagen-size boulders. “Carolyn! Carolyn!” I shouted in the maelstrom. No answer. The pass was straight ahead and there was a lake off to our right in a steep basin below. I was determined to make it over the 10,530-foot pass and down the other side to our day’s destination.

Once out of the huge boulders, I got a good look down to the lake below. It was a good 300 feet below me. Less than half a mile away, the pass was only another 200 feet up. But, there, there by the lake, I could see two dots – tents already set up with their owners, Rick and Caviness, waving their arms and yelling at me to drop down and join them. Carolyn was unpacking her tent, as well. This is not what we’d planned. I was determined not to lose the altitude I had so dearly gained just to avoid hiking in weather. In my rattling raingear, I yelled down at them, “I am not re-climbing this damn slope up from the lake later on! I’ll see you on the other side of the pass!” After much screaming at each other through the storm, I acquiesced and dropped down to the lake only to join my husband in new levels of rain-wet squalor and sweat-drenched gear in his tent below.

The next day broke calm, if not clear. The peaks cradling the lake reached for the sky looking like something out of the Swiss Alps. The sky still had enough moisture to make for a pink sunrise and the way to the pass was washed clean. Looking like a “yard sale” we dried everything out on rocks, packed it up, and carried on, albeit a bit behind schedule.

Clearly, unexpected changes and adaptations happen in life. In stage four cancer, those usually mean that the drug you’ve been taking to keep the cancer at bay is no longer working and you need to switch to a new one and hope it works. This has only happened to me once when Ibrance stopped working after six months and I moved on to Xeloda (Capecitabine). I was devastated beyond words. In pain, I could feel the growing tumors pressing on nerves exiting my spine. I started looking at my will again and swearing at God.

Luckily, I’ve been successfully treated with Xeloda for 2 3/4 years, only needing to deal with the side effects. Only… Even writing this I wonder if I am jinxing my good luck.

I’m seeing my doc every two months now, which seems like a long time to me. I hadn’t seen her for a year when I was diagnosed in January 2020 with tumors all over my spine, ribs, shoulders, liver, and spleen. For my bi-monthly visits, I get my blood drawn for my cancer marker, a protein on my cancer cells that increases when it’s growing and stays stable when it’s being kept in check by the drug. I tentatively check My Chart two days after my blood draw to check my results. Every two months for the last 2 and ¾ years, I’ve breathed a deep sigh of relief that it’s been stable. And then I immediately start wondering if in those last two days, things have gone south. I think I should post something celebratory but then I start wondering if I’ve already crossed that creek and need to find that new cliff-side ramp.

Living with stage four cancer is a hell of a way to live. I’m naturally not an anxious person. From a stressful childhood, I learned to dumb down my anxiety to make it manageable. It’s a habit that has served me well working at a high-stress job as a Clinical Lab Scientist in a hospital and for life’s emergency situations, like when a client had a heart attack on one of my trips. For twenty years I lived with the specter of its return over my head but I managed to stay firmly in the here and now of how healthy and strong I was. I used to say, “The treatment almost killed me. I’m sure it killed all the cancer.” How could I have known it was only hiding in some nook or crook between the rocks and sedges of my soul?

I’ve always dealt with stress by saying to myself, “Well if it’s not life and death, why worry?” Well, cancer IS life and death. And when I think about it, I worry. When I get an ache or pain, I worry. When women drop from my Xeloda Facebook group because it’s stopped working, I worry. And stress and worry are said to be bad for your immune system which fights cancer. Ahhhhhhh!!!

And to make matters worse, (I try not to complain, otherwise, I’d be complaining all day) I came down with Covid on our cruise to Alaska. More swearing at God. Sorry, God, you’re all I’ve got to get angry at. I haven’t yet transcended my challenges to thank Him for them. And don’t hold your breath. I’d be thrashing and hitting something if I had the energy or at least standing at my open front door in my fuzzy slippers yelling at the sky, “What the fuck?!”

Another of my survival tools is to tell myself, “It will get better.” Kinda like the Russians in a 1960s bread line. I find myself saying this at random points in the day, like a mantra. If I start to doubt it, I’ll be in real trouble.

So, lately, I wander around on cracked feet, mostly in my jammies ‘til about 2 pm, half-blind with chemo dry-eye syndrome, dropping things because the Xeloda has erased my fingerprints, blowing my nose, coughing and exhausted from Covid, imploring anyone within hearing distance to just shoot me.  I tested negative five days ago but I’m still weak and miserable. And I restart my weekly chemo regimen Saturday. I have a backpacking permit for July 30. Even if the road is open and clear (it’s a dirt road south of Yosemite) I need to get into shape. Right now, all I can do is pick my Olallieberry patch in the backyard and then collapse in the comfy chair with purple fingers. I don’t want to lose my altitude and descend to that lake but it looks like I’m already there.

Yesterday I accomplished one thing. I hauled boxes of my kids’ children’s books to the post office to mail to their kids. The heavy cardboard boxes fell out of my arms onto a vacant counter while I waited my turn. I bent over to keep from passing out. I explained to a woman behind me, “I’m negative but I’m recovering from Covid.” She jumped back as if I’d struck her.

“I’m immunocompromised,” she replied with fear on her now-masked face.

“Me, too. Chemo and Covid don’t mix well.” She continued to stand about ten feet behind me like I was a leper. I understand her concern. I just needed more compassion and less conviction. The clerk changed her gloves after handing me my receipt.

Hang in there with me. While you’re not traveling this route in my shoes, you can walk beside me in spirit, hear my ranting, smile at the absurdity of it all, and bring more compassion to the world. Thanks.