I go to SCCA two, three, or four times a month to volunteer with the Patient and Family Advisory Program and Council. Those visits are often inspiring although we are often dealing with grave topics. I get to work with SCCA/UW/Fred Hutch staff and other cancer patients/survivors and caregivers on ways to improve the care model and experiences for current and future cancer patients and their loved ones. It makes me feel like I am getting to play my tiny part in giving back to the people that saved my life. It fuels my soul and challenges my mind, and I absolutely love it.
Today, I showed up to SCCA, but not as a volunteer, advisor, or PFA council member, but as a patient for my annual appointment with my hematologist. I thought walking into a place I’ve been dozens of times in the past several months would be fine and feel the same. I had also made the choice to go to this appointment alone as a way of challenging myself to let go of my security blankets that I had in my husband, brother, mother, father, sister-in-law, mother-in-law, father-in-law, and countless friends who accompanied me to the numerous cancer appointments in the past 4.5 years. I thought I was ready to prove to myself that I was truly secure in my status as a cancer survivor, which in retrospect, was maybe too aspirational, arrogant, or naive, or some combination thereof.
Last night, I went to a cycle class, which is something I do twice a week. I know the instructors and how their class style will affect my breathing, heart rate, and muscles. The instructor last night is one of my favorites, but I walked away from class realizing my mind wasn’t completely present and my heart rate had been much higher than normal throughout the class. I tried to analyze it on my way home, but brushed it off and got back home to cook dinner and hunker down working until 1am.
This morning, when I finally got in the car to go to my appointment, I put on a playlist of some of my favorite songs that I normally listen to on the way to appointments, which typically help settle nerves and lift my spirit. As I walked from the parking garage, I felt myself taking deep breaths and sighing heavily. As I got into the elevator and then stood in line to check-in for labs, I felt my heart rate rising and waves of hot flashes. I checked in and then sat down trying to distract myself with work documents and emails. As I heard person after person being called including people who had checked in after me, I kept watching the staff. Finally, one came over and let me know that there was an error due to my oncologist not putting in the order for my labs, so they were trying to contact them to get them entered. The staff was thoughtful and continued to update me, but it took over an hour for this to be corrected. After the second notification that they were still waiting, I decided to stop trying to distract myself from what I was feeling and escape mentally by working, so I closed my laptop and was just present in the chaos of all that was happening in my mind and body and around me in the waiting room.
I ended up chatting with the two people beside me—both battling blood cancers. One had recently finished his treatment, but wasn’t healthy enough to go home. I got teary eyed as I listened to him and exchanged stories and similar experiences. The other was with his wife who had just been diagnosed and was starting her first day of treatment. He nervously asked me questions about my treatment and whether it was better to live closer to the hospital, as they currently live over 4 hours away. These conversations brought me perspective. I was honored they were willing to talk to me. Even though I was not feeling my best and facing some frustrations, I stopped and realized that I am incredibly fortunate to be in remission and healthy. It also reminded me the importance of being present. I would have missed out on the opportunity feel the warmth of connecting with both of them. Breaking down barriers and being comfortable despite vulnerabilities and finding commonalities and compassion is something truly special that comes out of battling cancer.
Although that experience helped me to begin to adjust my perspective, it wasn’t a cure-all, an I still struggled throughout the day. My lab results weren’t available when I met with my oncologist. My blood pressure was very high, higher than it has ever been in any of my visits, so my oncologist probed to see if it was a new issue that we needed to address. I described my anxiety and heart rate during last night’s cycle class, so we decided to let me monitor it and call if it didn’t subside in the next few days. I continued to feel anxious throughout the afternoon and over analyze my lab results when they finally appeared in my patient portal this afternoon.
Finally, this evening, I went for a run tonight to clear my head, try to understand what spiked my anxiety, and reflect and recenter. As I was running, I thought back to my experience from the waiting room earlier in the day. I was sitting beside people who were standing at the bottom of the long flight of stairs, hoping to see a glimmer of light at the top, but not sure they would make it all the way up. Meanwhile, I am fortunate to have climbed the stairs and made it to the top. I have tripped and fallen along the way, but I am now standing squarely at the top, enjoying the views, and basking in the light. It’s not perfect at the top. There are clouds and storms that pass through, but I know I can weather them and then again feel the warmth of the sun.
In the middle of my run, I took a few minutes to stand in the sun, looking out over the sound and watching the clouds. It was then that I found the shift in perspective I needed.