· Date: Monday July 22, 2019
· Rest Day: Cleveland, Ohio
The Case Western dorm rooms were hot, old, and a little musty. Rob and I were in a double with the head of our beds placed in front of the windows. There were personal fans for both Rob and I that only helped to move the air a little. It wasn’t until the night air had cooled down that I finally became comfortable and, in the morning, the heat quickly penetrated our room again. Despite this, we were glad to sleep on a mattress instead of our sleeping pads. Sprawling out was incredible and something extremely difficult to do. The twin beds felt like queen beds in comparison to our pads.
---The UH Seidman Cancer Center---
Today, we received a tour of the University Hospital Cleveland Medical Center’s Seidman Cancer Center. Cleveland was nice because everything was within walking distance and we didn’t have to worry about parking. As we walked over, there was a light drizzle that made our shoes squeak loudly on the hospital floor once we arrived. We signed volunteer forms expressing our commitment to confidentiality, and then the Coordinator of the Volunteer programs spoke with the team. Since it was a Monday morning, the cancer clinic we were visiting was slow and not a lot of patients were scheduled to come in. However, the hospital had organized us to talk with a few volunteers as well as whichever patients we bumped into.
We received a tour of the UH Seidman Cancer Center, which was a large building that houses all the cancer services offered by UH Cleveland Medical Center. What was special about this area, and the reason Ulman connected Team Boston with the UH Seidman Cancer Center, was the young adult cancer center it offered. This center was named the Angie Fowler Adolescent and Young Adult Cancer Institute and offered unique support services for those diagnosed with cancer between the ages of fifteen and thirty. It was the only Adolescent and Young Adult (AYA) specialized cancer center in the area and no surrounding hospitals offered services anywhere close to this for their AYA patient population. As we walked through the building, we saw small lounge areas for patients and their families with plants, flowers, and wide-open windows. The center offered various video games, movies, and televisions throughout the waiting areas. Many of these areas were also where patients could receive their infusions so that rather than going to the hospital, it seemed as though patients were going to a relaxing place to hang out. The volunteer giving us the tour explained how the family who had funded this area had named it after their daughter when they realized that the AYA patients were stuck in an in-between phase. There was no place for their adolescent daughter in children's hospitals, and no place for her in adult hospitals. I couldn’t agree more with this conclusion. It seemed every time I spoke to someone who had experienced going through treatment at an age in the AYA category, they would agree. Psychologically, AYA patients didn’t seem to fit anywhere. It was the goal of the Angie Fowler Adolescent and Young Adult Cancer Institute to provide that place where AYA patients felt they belonged.
I quickly realized that if Connecticut Children’s Medical Center (CCMC) or Memorial Sloan Kettering Cancer Center (MSK), the hospitals where I had been treated, had these accommodations it would have made the entire situation much easier. I generally would stay in my room at CCMC because I was either too sick or didn’t feel I belonged with the younger children. At CCMC it seemed I was the oldest patient there, yet I was only sixteen and seventeen. While I spent my time at MSK, it was difficult to find enjoyment in the large recreation room where cancer patients could go to relax during their inpatient stay. Much of the area was designed for older generations and had activities that I had little interest in. Once I was diagnosed with an infection and not allowed to leave my room, the only available form of entertainment was a television. But here at the Angie Fowler Institute, I would have been among patients of similar ages and had activities that I enjoyed doing. What I thought was especially beneficial, was that the design of the area. It was designed so that you could easily find your own space in the clinic while you were waiting or receiving treatment. If you did not like to be in your own space and wanted the company of others, this was available as well. Patients only have to go to any of the activity rooms or recreation rooms. The entire area, with its pastel colors and colored glass, had a sense of peace that could lower anyone’s anxiety.
My favorite area was the rooftop garden where anyone could go to relax and enjoy some time outside without leaving the premises. At CCMC they didn’t offer anything like this, and at MSK, their rooftop garden was all concrete with a large fence blocking the view. But at the UH Seidman Cancer Center, there were turf, fountains, and gardens throughout the entire rooftop. There were fun kaleidoscopes and artwork as well as places to sit with your family. If I had come here through treatment, this would have been so much more calming than anything I had ever experienced. I could tell that a place like this was perfect for those going through treatment and would have been a getaway from all the craziness associated with treatments.
I suddenly realized that so far, my time in the UH Seidman Cancer Center had not provoked as much anxiety as I always had whenever I visited another cancer floor. The anxiety, the dark memories, and the stress I had back in the Renown Regional Medical Center Cancer Unit in Reno, Nevada were all gone. This was the first time that I had ever felt calm during a walkthrough of a cancer unit. Even the small amount of anxiety I had in clinical during my short time on a cancer floor for school, seemed to be missing. Instead, I was reminiscing about funny moments through treatment and thinking about what could have been if I found myself in a place like this. I still am unsure if this is because of the environment of the UH Seidman Cancer Center, or if it was because of my evolving perspective on everything since leaving San Francisco. Maybe it was both. All I knew, is that I enjoyed it and I hoped that maybe this was the first time I was finding it in myself to make survivorship a strength and not a weakness.
At one point, we stopped to talk to three volunteers. All of the volunteers were survivors that had been treated in this very same facility. All three were girls, that still had short hair because their treatments had only ended a short while ago. I remember talking with one volunteer as our group went around to say why we were running across the country. When I said I was also a survivor, we had an unspoken bond. Later, I hung back a little and spoke briefly with her. We traded a few stories and I told her how much I think I would have benefitted if the hospitals I was treated at had offered a place like this. We talked about neuropathy and how we were each diagnosed. She was concerned that her neuropathy hadn’t gone away even though she had been out of treatment for almost a year now. I regretfully told her how my neuropathy hadn’t changed since the year after treatment. Maybe she would be different because of the different chemotherapeutic agents used, but this was normal for my treatment. We had to cut short our conversation, as Team Boston was about to leave, but I was so happy that I had been able to talk with her.
The entire morning had given me a completely different perspective on how hospitals approach the treatment of the AYA populations. I was disappointed that, to my knowledge, places like this were not offered in my area of Connecticut.
“Maybe one day,” I told myself, “I could help to contribute something like this.”
---Visiting with Scotty---
After leaving the UH Seidman Cancer Center, Erin asked a few of us to come with her to visit her friend Scotty. Scotty and Erin both went to the same college and had been diagnosed with Lymphoma around the same time. Now, Scotty had been re-diagnosed after being declared cancer-free and was awaiting a stem cell transplant here in Cleveland.
We walked over to the Transplant House of Cleveland, where Scotty and his mother were staying as he awaited his treatment. From our understanding, the Transplant House of Cleveland was much like the Ronald McDonald House and the Hope Lodge we had visited earlier in the trip. This was an area of renovated houses in Cleveland that housed patients and families seeking medical care at the Cleveland area medical centers. Walking into the house, it was immediately different though. Everything was private and there were no common spaces. It was more like an apartment building than anything, and the small group of us had difficulty fitting into Scotty’s living room which he and his mother were able to call theirs for the past few months.
As we sat there talking with each other, I was able to catch a glimpse more into what it is like as a survivor who was re-diagnosed. This was my worst possible fear and before every follow-up appointment, I always thought about this. To be able to talk to Scottie, was amazing because it gave me perspective on how I would be able to approach something of this magnitude. For Scottie, he explained how he had approached it as if his treatment hadn’t ever stopped. Although he did have a time where he was able to resume normal life, and even walked at his college graduation, for him the treatments always kept going. Even when he was declared cancer-free, he hadn’t felt the same. Doctors had determined that he was never cancer free and his original oncologist had made a mistake. I realized with this mentality, he had treated being re-diagnosis as a small hiccup in the entire process. Much like how I would treat a diagnosis of clostridium difficile (C. diff) as a small hiccup and compartmentalize it somewhere else in my brain, Scotty had done the same thing. I was amazed that he was able to do this and wondered if I would be able to do the same if a re-diagnosis ever occurred.
What made me worried is how far this would continue. As I would find out with compartmentalization after my treatment was completed, it was hard to un-compartmentalize something that had been pushed away for so long. This was exactly why I was struggling with survivor’s guilt and facing different fears of my treatment I had brushed aside as less important. Although I felt I was on my way to making my survivorship a strength, it had been about three years in the making and I still didn’t feel comfortable saying this. It was hard to get out of the rut, almost detrimental sometimes.
As I looked at Scotty’s tired eyes and sagging skin, I saw the face of someone who was exhausted and tired. Although his mentality and his words were strong, his body was weak. His mother was even more burnt out and admitted that they often had times when they didn’t get along. I was immediately reminded of the relationship with my mom during treatment. She had been the rock taking care of our family and myself throughout the entire process. Often putting herself before everyone. Caregiver burnout was a serious thing. What was more, was that they didn’t know when Scotty’s stem cell transplant would occur and once it did, the recovery process was often over a year long.
I found myself wanting to help them and to provide guidance, understanding, and support. Scotty told us how he often thought about how beneficial it would be to talk with someone his age who was going through a similar situation and I couldn’t agree more. We all explained about Imerman Angels and how he was sure to benefit from this foundation and an Angel Mentor. He seemed to brighten up at the idea, but at this point in the visit, we had been with Scotty and his mother for about an hour. Scotty was getting tired and trying not to show it. I remembered when I was going through treatment and people extended their stay without realizing how exhausted I quickly became.
Soon, we said our goodbyes and good wishes. Scotty was so happy to have been able to talk with us and share our experiences. I wished that we could make another visit with Scotty soon, but knew that I would probably never see him again. As we exited the Transplant House of Cleveland, I found myself hoping that I could help people like Scotty and his mother someday. To provide any sense of understanding in a world where you always seemed alone, could change everything for them both.
---Later---
Visiting the UH Seidman Cancer Center and Erin’s friend Scotty made for a long morning. We hadn’t eaten since a quick breakfast in the morning and were starving. So, Caroline, Rob, Tyler B., and I all used our Subway gift cards together. I didn’t want to eat too much to upset my stomach for the time trial that Tyler S. and I were planning on doing later tonight. I was starting to get butterflies in my stomach that I hadn’t felt since my days of racing track in high school. Although I had never been competitive by any means, they always happened, and the familiar feeling was coming back today.
The four of us found ourselves reflecting again, as we had after stumbling upon the Chicago Survivor’s Plaza. We talked about visiting the hospital in the morning and then about visiting with Scotty. We seemed to always be on the same page with things when we found the team had taken a different perspective on things. Maybe we looked at things on a deeper level, or over analyzed it, I am unsure. Regardless, it was nice to sit and eat lunch on the picnic tables in the University Circle.
Rob, Caroline, and Tyler B. decided to go do some exploring and I went back to our dorms to take a nap. I decided to write a little and then fell asleep. I woke up two hours later after having slept through my alarms. I couldn’t believe it! I didn’t even hear Rob come in through our squeaky door to the room.
“I need to start sleeping more,” I told myself as I rubbed the sleepiness out of my eyes.
I rolled over and looked out the window just in time to see people throwing pies in the faces of a few members of Team Boston. Over the past few days, we had been doing a team fundraiser. Once a certain amount was raised, a few of us had to go ask a stranger to throw a pie in our face. I was so relieved other people had volunteered for this as the pie’s sticky cool whip and guts slid across their faces and down their shirts. It was so funny though and we were so glad we had raised the amount we had! We were getting close to raising two-hundred thousand dollars as a team, for the Ulman Foundation!
For the next few hours, I would relax with the team and eat a small snack. I stretched and rolled out my muscles and then went over to the Case Western Athletic Complex with Tyler S. Here, Team Boston came to support us as Tyler paced me for a mile time trial. We were so appreciative of this it would have been so much more difficult without their constant yelling and cheering! I found it exhausting and later went out to eat with Tyler for dinner.
For a full recap on this portion of Project:Return, another blog post will be released soon.
After dinner with Tyler, I did some laundry and went to bed early. I was beyond exhausted and could have passed out even before running the time trial with Tyler. We had done so much today, and the rest day felt more exhausting than the last few running days where we had lower mileage through Michigan and Ohio. Psychologically, there was also a lot to comprehend today. Much of what I wrote reflecting on the time spent visiting the UH Seidman Cancer Center and with Scotty took days to comprehend. Before going to sleep, even if I was still processing everything, I knew it was a special day.
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