March, the lion

“I took a deep breath and listened to the old brag of my heart. I am, I am, I am.” - Sylvia Plath, The Bell Jar

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds.” - James 1:2

Snowshoe buddies!

The early March skies were brilliant blue against the Colorado mountains, the snow shimmered in abundant sunshine, and my friends surrounded me in their snowshoes. Once again, we were gathered in Frisco for the Snowshoe for the Cure. I didn't publicize my participation much this year, since I'd recently received my metastatic breast cancer diagnosis, and I was overwhelmed by hunting for clinical trials and coming to terms with my new reality. Our team was amazing, as to be expected. Several of my closest friends rallied around to show support and celebrate.

But, I could barely breathe.

Chalking up my breathing challenges and frequent coughing to the 10,000-foot-plus altitude, I sat out the actual event so as to avoid further taxing my struggling lungs. Sarah and I hung back near the start/finish line, talked to vendors, and waited for our team to return. It was a fun day overall and being with friends was special, but my heart wasn't in the experience like last year when I thought my cancer fight was nearing its end.

Two days after the event - when my besties Sarah and Sacha had headed back to their respective families - Sean and I boarded a plane to Chicago to get started on my clinical trial adventure at Northwestern. Unfortunately, we were deemed ineligible for a trial we'd considered in Denver (per the study sponsor's criteria, I had not failed enough chemotherapy treatments), but this immunotherapy trial at Northwestern held exciting promise. As a bonus for this trip, we were able to spend time with my sister Dee and brother-in-law Vinay upon arriving home; they and my parents had canceled their vacation plans to be in sunny Arizona that week in order to be with us instead.

Bright and early, March 6, Dee and Vinay accompanied Sean and me to my first immunotherapy appointment. We zipped into the city of Chicago, and we had a very long day of lab draws, seeing the oncologist, and waiting... Finally, I received the 30-minute immunotherapy infusion (the drug is called pembrolizumab). Other than being tired from the day, I felt good.

Nephews are the best

The next day was a special one, as my oldest nephew Grant turned 10. Our whole family took a day trip to the Shedd Aquarium and Oceanarium. It's never easy keeping up with the three nephews, but I took things even more slowly than usual and fell behind a lot. I found myself unable to breathe comfortably while getting around, especially when taking the stairs, and needing to sit down frequently.

By Thursday of that week, I was starting to worry about traveling to Houston for the ACPA convention. I was slated to leave the following day, but I wasn't confident I could safely board an airplane. My lungs hurt terribly, and I couldn't get my coughing under control at times. Reluctantly, I let my colleagues with whom I was supposed to present a pre-conference know that I was going to be delayed in arriving. Through the weekend, Sean and I booked and canceled several different flights to Houston. Tearfully, on Sunday night, I told my husband to nix the remaining flights - I wasn't going to be able to go to the conference, where I was slated to co-present several sessions and receive the ACPA Diamond Honoree Award. I needed medical attention.

The shortness of breath and persistent coughing became so bad that on Monday, March 12, Sean called and got us an appointment with cancer triage at Northwestern. Fairly immediately, I was put on oxygen to ease my breathing. After an x-ray, some blood work, and a simple exam, the nurse practitioner let me know that my lungs had so much fluid surrounding them that I was only taking in about 50% as much air as I typically do. I was functioning, literally, at half capacity.

Hospital room with a view

As a result of my compromised lungs, I wound up being admitted to the hospital. At the time, we expected it would be just for one night, but that eventually stretched to four. The nurse practitioner in triage promised she'd pull some strings so we'd get a nice room on the 15th floor. She wasn't kidding... we had a gorgeous view of Lake Michigan.

Lest you think my spouse Sean is anything but an amazing rockstar partner, know that he was there with me at every turn. And, if you haven't seen a 6' 4" guy curl up on one of those pullout hospital couch-beds, you might not be able to fully appreciate the sacrifices he made for me. Sean cared for me, made sure I was fed, and communicated with our families and friends. My parents and best friend Sarah came to visit, which helped keep me occupied as the long hours in a hospital bed went on and on. In fact, Sarah sat with me during the time I would have been in the Diamond Honoree ceremony. We saw the sweet intro video played at the ceremony, which my friend Noah compiled. Then, together, we watched our friend Jen's live stream of the ceremony (I had a cheering section on site! I'm so blessed to have great friends), during which my dear friend and former roomie Claire read remarks I had prepared to the other honorees and attendees. Sarah laid her head on my shoulder and got teary; she's known me since we started our master's program together, right out of undergrad. Hearing her say how proud she was of me meant the world. If I couldn't be in Houston, sharing that evening with Sarah and Sean was an ideal substitute.

Over the course of the five days I was in the hospital, the pulmonary team at Northwestern tapped and drained my pleural effusions three different times (pulling out more than 3 liters of fluid from just the left side alone). The procedures were painful and difficult for me. The initial draining was done in my hospital room, and Sean left in case the process was too much for him to watch. I nearly passed out during the experience, and I had to ask the doctors to stop. For the succeeding procedures, Sean came with me, as I was wheeled from one building to another in order to be tapped in the pulmonary suite.

And, before I left the hospital, the team determined that giving me a PleurX was my best bet for now, to keep the fluid from accumulating so much again. Don't know what a PleurX is? No worries, neither did I until they (surgically) shoved a catheter tube into my side - wedging it into the pleural lining around my lungs - coiled it up, and put a big bandage over it. Every few days, Sean unwraps the bandage and unfurls the tubing. Then, he hooks it up to a jar that looks kind of like a vase you might put on your mantel. But, it's not... apparently it's some negative pressure device that sucks the cranberry juice-looking fluid out of the lining.

I had to wear a serious mask every time
I left my room to see the pulmonologists

Before I could be discharged, we also had to be sure I was getting enough oxygen into my system. I did some slow walking around the hospital floor with a nurse, and, ultimately, I failed the test as my levels kept dipping below the desired threshold. I was sent away with an oxygen tank (a compressor and several more tanks were delivered to my parents' house) to use as needed.

For the next week, Sean and I stayed with my folks in the house I grew up in outside Chicago. As I was recovering, I didn't want to/really couldn't fly to Colorado, and I had another immunotherapy infusion coming up at Northwestern. Three weeks passed overall, with us making our home base with my parents. Their hospitality and generosity is boundless, and I'm thankful for their love. Finally, after this past Monday's pembrolizumab infusion - which went well overall and included a shot of Xgeva to help strengthen my bones - I was cleared to fly without an oxygen tank. Sean and I took a red eye flight back to Colorado. Our 16-year-old kitty Lizzie was elated to have us home; she'd been terrorizing our cat sitter and friends for several days with upset tummy issues.

It feels like this month was one giant trial. I'd like to report that things are looking up, but that's tough because I'm feeling emotionally and physically ravaged. The recent infusion has me quite fatigued, I have pain in my ribs and left leg, and I'm experiencing inexplicable blurriness in my right eye. I keep looking for the silver lining, but all I come up with is my stupid pleural lining... I know March is supposed to come in like a lion and go out like a lamb, but the month has been consistently leonine for me.

When I let myself relax and feel gratitude, I know I was gifted with quality time with family and friends in March. I missed a special occasion, but I was showered with love regardless. At least I can breathe again, right? I may chronically be in pain, but I can feel, I'm alive, I'm in treatment, and I'm back home. That's going to have to be enough for now; it's really all I can muster.