Changing Course

It has been a summer full of adventure. Some ups and some downs, but overall, a pretty good summer. Amid doctor’s appointments and pills and side effects, we managed to squeeze in a big road trip West, State Fair, Ren Faire, Girls Rock and a couple camping trips. We also started a butterfly garden! This is life with metastatic cancer. You never know when, or where, disease progression will hit. Take every opportunity to take the trip, see the friends, tackle the bucket list. Live fully, in small increments (between naps). Things may change quickly, putting simple things out of reach. 

My first sign of metastasis was a year ago, when fluid filled around my lungs. Chest tubes and Ibrance took care of that for a few months, then the cancer moved to my pelvis. A second drug, Xeloda resolved those problems and I had a few healthy months. In May, I started having new issues in my abdomen. My appetite was terrible, complete with GI issues and a swelling belly. I told my oncologist before our big trip out west, but CT and pet scans showed stability, and she said “take the trip”. I knew in my gut, though, that something wasn’t right. I’m tuned into my body, now more than ever, and I always know something is wrong before any tests confirm it.

July 5th, we loaded up the camping gear, and aimed west with a loose plan. We saw the Bonneville salt flats, and ran fast over the crunchy surface. We went to Crater Lake, Andy’s favorite National Park, and dipped in the unworldly, pristine water. We made it all the way to the pacific coast, where the girls floated in salt water for the first time. We walked among the giant redwoods. Heading back east over twisty mountain passes, we stopped at “Borden State Park” to get to know Adventure Trio and share travel stories around the campfire. Kaylei was the bold one who jumped off the waterfall. We saw the Tetons. We lingered in Custer, SD, where Michelle’s hospitality at Chalet Motel was a warm and welcoming step back in time. We explored caves, roamed with bison and saw the badlands again. We covered a lot of miles. 5,200 miles, to be exact (no breakdowns-well, for the truck, anyway. The kids may have had a few…)

Back home, we had a few days to re-pack for a weekend of camping and the triathlon where a new batch of brave cancer surviving women (Hey Team Phoenix!) became triathletes. We were there to cheer and help take pictures for the team. That was how our July went. I was making the most of everything, even though I was feeling worse and worse. By the Sunday morning of the triathlon (July 28th), I was ready to go to the hospital. Our 5:00 alarm wasn’t going to get me moving. I sent everyone ahead, took some pain pills and caught up in time to watch the race start. Packing up camp was exhausting, but with help from the family, I made it home to unpack. I re-packed  again. This time, it was my hospital bag, an all too familiar process now. 

After several hours of tests, and waiting (mostly waiting) in the ER, I was told I could either leave and let my oncologist order a paracentesis (a procedure to drain fluid from around the abdomen), or be admitted and do the procedure the next day. I couldn’t have waited much longer, so I was admitted for a long, uncomfortable night in the hospital.  I did have a few lovely visitors brighten my mood.

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As the fluid started draining, I could feel instant relief. I could breath better, the nausea stopped, the pain in my spine faded, and I started to feel better. 4.2 Liters of fluid was taken. I’m not sure where I kept it, but I know why I felt like I swallowed a bowling ball and looked pregnant. It was nearly twelve pounds of fluid.

In the hospital, I stopped the oral chemo (it didn’t work…) I would meet with my oncologist to determine my third line of treatment. She went to tumor board with my case and settled on a hormone blocker with another oral chemo. In the meantime, to my shock, the fluid started building with days. Before I could start the new treatment, I was back at the hospital for another paracentesis. This time they drained 2.5 liters (just 2 weeks after the first procedure). 

Friday, Aug 16, I had a few more tests and a consult with the oncologist for the new meds. She entered the room with news that we were changing course. The pills she wanted me on would not work fast enough given that the fluid had came back so fast.  We needed a more aggressive treatment. She told me it was time for IV chemo again.  This was a day I was hoping would be years in the future. IV chemo is usually reserved for late in the game when more aggressive action is necessary. My oncologist assured me that I could go back to try the pill combo once I stabilize. We also discussed Foundation One testing, which could be helpful in tailoring treatments to my needs.

I left the appointment with a lot on my mind – side effects, hair loss, being tethered to weekly appointments. I packed the truck up and headed to the family lake house to relax and prepare for this next step. I missed lake time last year for the first time in my life, in exchange for 6 nights in the hospital with chest tubes, so I wasn’t missing lake time this year! It’s been nice taking a minute, but I’m ready to face the next treatment in hopes that it resolves the fluid and pain. 

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Thursday, I have a small surgery to place a port in my chest, so the chemo drugs don’t damage my veins. Then Friday, I have my first of the weekly Taxol infusions. Weekly treatments limit my wanderlust, so I’m happy we got another long trip in before starting this regime.  Let’s hope this one gives me (a lot) more time. 

Travel has taught me a lot about serendipity and changing course when needed. I trust that my doctor is guiding me in the right direction to get back on the road I want to follow. 

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Deer in the Headlight

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Picture this-it is early morning on a twisty country road along the mighty Mississippi River. The sun is just beginning to rise, pink light playing on the leaves. Fog is clinging in the shadows. The deer are very active and darting all around me. I figure I face two options. I can either stay in bed, postpone the ride, allowing the fear of hitting a deer paralyze me with “what if”. Or I can fire up the bike and go experience the twists in the road. Taking time to appreciate the cool morning air, the beauty all around, even though there might be dangers at any curve. I’ve learned a lot about fear over the last few years. Now, given a choice, I’ll alway chose to jump in, take the chance, and experience life fully.

How did I get here? Beginning in May, I started struggling with heart palpitations and shortness of breath. By the end of May, all of the tests on my heart came back with the all clear. The next step would be to test my lungs. I was feeling frustrated with medical tests with no answers. Andy was out of town presenting at the Overland Expo in Flagstaff. Restless, I decided that I needed some throttle therapy. It was a hot weekend. I loaded up the bike and headed west to camp along the Mississippi river. I spent the night in the hammock tent at Wyalusing State Park, high on the river bluffs. Large storms passed through in the early morning hours, I watched the rain and lightning from my perch overlooking the river. I woke up to a very soggy campsite, so there was no reason to linger. I loaded the bike for an early start on the great river road. I packed up camp and got on the road at 6:30 am. I had a lot of miles ahead of me and I was excited to ride.

Occasionally on the ride, a deer would cross the road in front of me and I would feel myself tense up with fear. When I noticed the tension, I’d take a deep breath, slow down a bit, and let the fear go. Proceeding a little more cautiously, my mind wandered, as often happens when I’m getting my throttle therapy. I made a connection between the fear of hitting a deer on my motorcycle and the fear of cancer re-impacting my life. The analogy bounced around my mind. It became crystal clear and gave me some degree of comfort. Simply, I concluded, there is only so much that can be done to prevent bad things from happening. After taking precautions, all you can do is let go and trust that things will be alright. Things out of your control will happen whether you fear it or not. There is no reason to paralyze yourself with irrational fear over things that are out of your control. I will not let the fear that something bad MIGHT happen prevent me from doing the things I love. That is not living.

 

On this particular ride, I decided to slow down and watch carefully for deer crossing, but also committed to relaxing and enjoying the ride as fully as possible, embracing the cool morning air and the curves in the road. Deer are unpredictable. If a deer decided to dart out into the road, too close to avoid collision, it would be outside of my control. Cancer, also unpredictable, can return despite all the efforts to eat well, exercise, and avoid carcinogens. Once we take reasonable precautions to keep safe on the motorcycle or maintain our health, all that’s left is to is to live and let life happen. I, for one, am not going to allow fear to stop me from doing the things I love. I put 500 miles on the Suzuki that day. The deer and I stayed out of each other’s way, and I met up with Andy in Hannibal, MO, where we had a great night exploring a new town. Fear did not stop me.

We rode home together, and I saw my Medical Oncologist a few weeks later. She saw that all of my heart tests were clear, yet my complaint of shortness of breath put her on alert and she scheduled me immediately for a chest x-ray and CT scan. I suppose that, as a cancer patient, red flags go up faster than with other patients. The first step is always to rule out the serious stuff. That we did. With clean scan results, I proceeded with my plans for a big party celebrating my marriage. The rest of the summer was spent on an epic “family-moon” with my husband and my daughters. We had many adventures along the way and made great memories. Had we sat home worrying about “what ifs,” we never would have enjoyed a trip like this.

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I frequently find comfort in the analogy I dreamed up during that early morning riding along the Mississippi. I remind myself that the fear itself is not tangible. Fear of danger on the motorcycle, or fear of cancer are “maybes” out of our control. The thing we fear may or may not happen, so why let it control our lives? The fear may feel real, but fear can be controlled and overcome. We can control the fear. We have limited control over accidents. We have limited control over cancer, but we can control the fear of these things. We can control how we face these things. I will not stop doing things I love due to something that may never happen.

These are the lessons I learned when facing the deer in the headlight that day on the river. In motorcycling, prepare yourself. Always improve on your riding skills, wear safety gear, stay alert for the unexpected. If a deer crosses your path, you will be ready. Then enjoy the ride. In life, prepare yourself for health. Exercise, reduce stress, eat healthy food, listen to what your body needs, stay alert for the unexpected. Then enjoy the joys of living a full life. You’ll be ready.

Throttle Therapy

Memorial Day Weekend was approaching, and I had nothing planned. My kids were scheduled to be with their dad, my family picnic had been postponed, my boyfriend was out of town, soon to be returning from a two week motorcycle trip across the country (www.traveling250.com), and the weather was going to be beautiful. That’s saying a lot for a Memorial Day Weekend in Wisconsin, which is usually over-scheduled and has a 50-50 chance of being miserably cold and rainy.

Memorial Day Weekend this year would also be day five and six of my current round of chemotherapy. Days, which, in the past, have proven to be low points for me. I knew one thing, though, I was not going to sit home and wait for side effects to kick in. I was feeling really healthy, so, at the last minute, I started toying with the idea of meeting my boyfriend somewhere along his route home. By motorcycle. The idea of getting out of town, taking a break from all the medical stuff, getting out there on my bike, and seeing Andy a little sooner was very appealing.

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We started discussing places to meet. He mentioned New Glarus, a quaint little Swiss village southwest of Madison. It would be an easy ride for me, and sounded nice, but I soon found that I couldn’t get a room in New Glarus due to a music festival which was taking place. So, looking at my map, I thought Mineral Point looked like another good choice. I really knew nothing about Mineral Point, but judging from the research I did online, it looked like a nice place for a quiet getaway. The town was formed in the 1830s and 40s, and being a fan of historic architecture, I thought I would find it interesting. And, it is in the driftless area of Wisconsin, which means beautiful, rolling motorcycle roads. I splurged a little and booked a really amazing looking room for Saturday night.

I woke up Saturday morning feeling great and super giddy for my road trip. I had arranged to ride out of town with my good friend, Mary. We would ride together until lunch time, at which point we would go our separate ways. It was perfect motorcycling weather. Sunny and warm. We had an uneventful ride out (except for that one playful dear along the side of the road) and stopped for a leisurely lunch at a favorite place.

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After lunch, I continued west. As I got close to Madison I decided to get off the highway and onto quieter country roads. The smells, the sights, the serene experience, passing through small towns, was just what I needed. This is what I affectionately call “throttle therapy”. It is the rejuvenating power I feel when I ride my motorcycle. Once I got past Madison, the roads got quieter and stretched out in gentle curves in front of me. I was feeling great!

Even though we didn’t set a meeting time, and we had different distances to cover, we arrived at the hotel within minutes of each other. Right on the main street, but tucked away with a hidden garden entrance, our room was remarkable. It had masonry walls filled with whimsical art built into the walls, a kitchenette and living room filled with books about the art and architecture of Mineral Point, a claw foot bathtub and bedroom up a set of stairs. I knew instantly that this was just what the doctor ordered.

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We had a wonderful dinner, wine and even saved room for dessert (because, let’s be honest, I can’t resist chocolate cake with red wine) at the Brewery Creek Brewpub. There was time for a soak in the claw foot tub and a great night’s sleep. In the morning, the sun was streaming in, past the gardens where the motorcycles were parked and through the stained glass decorations in the window. I made some tea and curled up on the couch, looking through some of the interesting books that filled the place. It was a beautifully peaceful morning.

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We learned that we simply cannot leave Mineral Point without sampling figgyhobbin, a Cornish pastry filled with a mix of raisins, walnuts, brown sugar, and butter and covered with caramel sauce and whipped cream. Glad we took that advice and tried the figgyhobbin, we found that it was the perfectly sweet end to a perfectly sweet getaway.

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