Hi Everyone!

This is a long post, and it isn't all pretty, but that's the way it goes, right? Ups and downs, and then ups again. I have been working on a cancer memoir that I would love to publish some day, but it's very slow going. I'm retracing my memory to the diagnosis and beyond, and trying to write sequentially. Sometimes though, I have written what was happening in the moment, because I find writing about it therapeutic. Those pieces will get tucked into the memoir when my writing finally catches up to them. I decided to post a couple of them now, instead of writing a separate Caring Bridge post. They will bring you up to date. 

Love to all of you!

Kathy

4/17/23 CT

In November of 2022, my chemotherapy drug was changed to gemcitabine, and the infusion schedule changed from one infusion every three weeks to two infusions every three weeks. I was exhausted, both physically and mentally, feeling that as soon as one infusion was done it was time for the next. At the end of December, my CT not only showed no progression of disease, it showed that some tumors were actually becoming less dense. After reviewing the results with Dr. Ness, I surprised him by asking for a chemo break right as he was about to sign the orders for my next infusion. When he said OK, I was so elated I danced a jig on the way out.

I told myself that I would just take six weeks off, rest my body and refresh my mind, and then return to chemo with new determination and resolve. The last CT had been so good that I was sure the tumors would continue shrinking. I knew my body was stabilizing and “figuring things out” after 4 years of treatment. So after six weeks, I told Dr. Ness I was ready to resume chemo, but that after the next CT, I wanted a long summer break. He agreed that if the CT was good, my long break was approved.

So my countdown began: six more infusions and I would be home free! There was a constant tally in my head of how many infusions I had to go. I was champing at the bit to be off chemo for the summer. Five more infusions to go, then four. It seemed interminable, and I asked if I could have the CT sooner so that I could begin my break sooner. To my frustration, the answer was no. Three infusions left. Then two. Finally, with the extra push that it takes to finish a marathon, I had my final infusion. I had crossed the finish line! 

I thought a lot about what I would do on my break. Simple things, really. I didn’t want to travel, or to go hiking like I used to. I just wanted to be able to read a book without falling asleep. I wanted to spend time in the garden without having to rest before going back in the house. I wanted to take Margi for walks that were longer than a few blocks. I wanted to visit with friends and family. I wanted to go out to eat, go to plays, take classes, try new recipes. I wanted to live a normal life without paying the price of two hours of bone-tired exhaustion for every one hour of pleasure.

I couldn’t wait for the CT. It would mark the beginning of my long-anticipated break. I was sitting on the couch one morning with Mike when the CT results showed up in my online portal. Suddenly, I was scared. We reassured ourselves by sending gratitude to the universe for the good results we were about to see. I braced myself, clicked on the report, and held my breath. My heart pounding, I went straight to the conclusion at the end of the four-page report. “What does it say?” Mike impatiently asked. Stunned, I read it aloud. “Progression of disease with enlarging liver lesions, left adrenal mass, and lung nodules.” One of the liver lesions had almost doubled in size. We sat in silence together. Mike finally said “I feel everything you’re feeling,” and I broke into sobs.

This wasn’t the first time a CT had shown progression of disease, but somehow it was harder to take than all the other times. We had just marked the fourth anniversary of my cancer diagnosis, and I felt the weight of all the chemo and radiation and procedures and tests that I had been through over those four years. And I had been so sure, so absolutely convinced, that this CT would be even better than the last. All of my positivity crumpled around me. How could this be? I felt deceived, lied to, betrayed. My body had tricked me, the hopeful CT had tricked me, my own thoughts had tricked me. The marathon that I thought I had finished in fact had several more miles to go.

Feeling empty and sick, I went to bed. Maybe I wouldn’t eventually have the long remission I had believed in after all. Maybe it was time to give up. I was tired of trudging uphill. I was tired of being tired. I was tired of giving myself constant pep talks. I was tired of trying. I was tired of everything. My energy disappeared like the air in a balloon, leaving me hollow and deflated.

Mike laid down next to me and held me while I cried. “I wish I could take your place,” he said. I tried to find something, anything, to be grateful for but I couldn’t. I couldn’t even be grateful for him. Nothing mattered in that moment but my sorrow. I was engulfed in something ugly and dark, and I couldn’t find my way out. I curled into a fetal position and fell asleep.

If it weren’t for mundane tasks, I could have stayed in bed for days. But I had to use the bathroom. Eventually, I had to eat. My dog depended on me. Mike needed me to join the living. I needed to join the living. It made no sense to go through the last four years to just disengage from life now. It wasn’t my nature to give up. As my friend who had cancer always said, “Don’t die until you die.”

I wasn’t familiar with depression, and I didn’t like it. Little by little, I pushed myself to look at things differently. What if there never were a finish line? Could I enjoy my days anyway? I had already been through much worse; surely I could handle this. I resolved to dig deep, to continue taking chemo, and not let it stop me from doing the things I wanted to do. So what if I couldn’t go as far or do as much as I had hoped? So what if I needed to rest? The way to return to happiness, I knew, lay in being completely present in everything I did; to fully enjoy doing the things I wanted to do, and to fully enjoy the inevitable rest afterward.

I still cried when Dr. Ness recommended going back on a chemo drug I had taken previously. But when he said he wanted me to have a liver biopsy which might help us find an alternative to chemo, I felt hopeful. Once again, there was something to look forward to. Maybe, just maybe, this time I would receive results I wanted to hear.

8/21/23

                     “ My anxieties have anxieties.”  Charlie Brown, by Charles M. Schulz

            “For peace of mind, resign as general manager of the universe.”  Author unknown

After 3 cycles of docetaxel, the chemo drug which had put me in the hospital just a year before, I had another stay in the hospital, again for neutropenic fever. I was tired of chemo and tired of the hospital, but if the CT scan showed the cancer had been halted, it would all be worth it.

But the July 2023 scan showed that the cancer hadn’t been halted. It hadn’t even been phased by the docetaxel. It had continued marching onward as if nothing would stand in its way. The return to docetaxel had been our last option. There were no more medically approved treatments for me. The testing of my liver biopsy showed that there were, however, some clinical trials going on that might be able to help me. Dr. Ness sent my records to the Fred Hutchinson Cancer Center in Seattle, and I hoped that I would qualify for one of their trials.

The next step was to have a consultation with an oncologist at Fred Hutch. Curtis agreed to go with me, and we planned to be gone for two days: one to fly to Seattle, and the next for my appointment and return flight home.

Somehow during this time, anxiety found an opening, took advantage of it, and moved in.

I couldn’t relax. I didn’t know what had triggered it, but I could feel my heart racing, my shoulders knotted, my jaw tightly clenched. Something from the shadows of my subconscious was making me miserable, and I couldn’t even put a name on it. I couldn’t convince my body that there was no saber tooth tiger lurking around the corner. If I could have identified the cause of the fear, maybe I could have released it. But I didn’t know if it was fear of travel, fear of starting a clinical trial, fear of not starting a clinical trial, or just plain fear of the unknown. My body was on high alert, falsely warning me to watch out for danger here, there, and everywhere. I started micromanaging everything. My life felt out of control, so I tried to control it in every way I could.

Sometimes I could talk myself down from the ledge. I would tell myself that we couldn’t control our lives, that I just needed to go with the flow, and the sooner I accepted that the better. I told myself that everything was for my highest good. I told myself to take things one day at a time, one hour at a time, one minute at a time. The anxiety would lessen to the point that I could pretend that it wasn’t there, and even enjoy myself. But no matter what I did, it would never completely leave.

The trip was a whirlwind two days. There were many things to appreciate. I was grateful to be spending time with Curtis. The oncologist was kind, and she told me about a couple of clinical trials, although I still wouldn’t know for a while whether I could take part in one or not. I had fun trying out new restaurants and eating delicious food. It was a particular treat for me to eat with a chemo-free palate, because while I was on chemo, everything tasted truly awful. But beneath the lovely new experiences, the anxiety remained ever-present.

A series of disasters brought the anxiety to fever pitch. Our ride back to the airport was half an hour late. Traffic on the way was nightmarish. The line to get through security was a maze of travelers winding back and forth, back and forth; such a massive sea of humanity that I couldn’t even see where it ended. When we finally got to security, I threw my items into a bin and raced to the body scanner, only to realize that I had forgotten to take my shoes off. After plowing against traffic to get yet another bin for my shoes, I finally succeeded in getting through the scanner. We gathered our things and raced on to our gate, hoping for some miraculous time warp to unfold. It didn’t, of course, and we missed our flight. After the extended period of panic, it was good to have nothing to do but explore the airport and try yet another new restaurant before boarding the next flight home.

Once home, I expected the anxiety to quietly go on its way. What was left to be anxious about? I was done traveling for a while, steps toward a clinical trial had been taken, and there was nothing more I could do. Except worry, and worry I did, even though I didn’t know what I was worrying about. I knew what a waste of time it was. I knew the stress it was putting on my body, yet I couldn’t stop it. I was exhausted from constantly feeling that I was fleeing from some threat. My body was a radio tuned into the static of anxiety, and there was no way to turn it off. Sometimes the volume was on low, but sometimes it was so blaringly loud that it drowned out everything else.

I knew that the kindergarten girl I used to be was still in me somewhere, and I desperately wanted to bring her out. She knew how to play, how to have fun, how to be joyful. She used to skip on her way to school, thinking of nothing but the happy clicking sound her girly shoes made on the sidewalk. Where was she now? She was hiding somewhere, afraid of the other part of me that saw danger lurking around every corner.

I tried to entice that little girl with activities she liked. I wore a dress. I doodled with markers. I sang songs. I watched The Little Mermaid. She kept hiding. I imagined myself holding her, telling her I loved her, telling her it was safe to come out and play. She would tentatively come out for a while, only to recede when the static of anxiety once again became deafening.

It was strange for me to be dealing with this. I thought I had kicked anxiety to the curb long ago. But something from the shadows insisted on surfacing, and in the end the only thing I could think of to do was to acknowledge it. To say yes, I see you, I feel you, I understand you are here. It’s ok. Now, lighten up, let go of your dread, sit back, and let the little girl play. She knows what to do. Follow her lead.