It’s been a blur since my last post. The Inotuzamab didn’t get shipped until Thursday – apparently the request letter from the doctor has to be on hospital letterhead. Perhaps someone should have mentioned that was an issue. Despite the frustration, there was the benefit of being able to eat and sleep at home for a few more days. We also went to a neighbor’s house and picked cherries (Thank you, Ellen!). I didn’t pick very many, but it was entertaining to watch Susie on the ladder tossing them down to my dad. We also learned that a paper clip works well as a pitting tool – who knew? I’m still really disappointed that I had to cancel my summer road trip. Cancelling reservations sucked, but I have to give a special shout-out to KOA. Not only do they support camp, but when I said I needed to cancel because of medical reasons and can’t take my trip, they gave me a full refund. On Friday, I was admitted to the hospital to receive the Inotuzamab. Inotuzamab is a drug that targets the CD-22 protein expressed on leukemia. I received the first dose Friday night, which was quite a production. The medicine is very light sensitive, so all of the IV tubing had to be wrapped in aluminum foil. “Foil shielding” doesn’t come standard from the pharmacy, so the nurse had to make it, which was amusing. I had a 103 degree fever before noon the next day, but there was no sign of infection, so the doctors concluded this was most likely due to cytokine release – essentially toxins that are released as cancer cells die. The fever quickly subsided and I was able to go home a few days later. To top it off, when I asked permission to go to a graduation party, I was told my only restrictions were no skydiving or MMA. In addition, summer classes were starting, so I would be busy. My next treatment (7/7) was fairly uneventful, and accompanied by a great surprise. My cousin Annabelle and my friend Mandy both traveled to Maryland as an early birthday present. Jenn joined us and we went to Quiet Waters Park, and then to dinner at Mandy’s parents. We went downtown for ice cream, and walked to the harbor and talked about a little bit of everything. Having their company for a ‘normal’ evening was a great present. Unfortunately, my actual birthday (7/11) was not nearly as nice. Results from the bone marrow tests the previous Friday indicated that I still had measureable leukemia, and that it was no longer expressing CD-22. The leukemia had mutated again, and the Inotuzamab would no longer be effective. By the end of the week, I was back in the hospital for chemotherapy. I was reminded again that games are a good way to pass the time in the hospital. On the weekend, my dad and I played Uno – and the nurses joined us for some great games of Bananagrams. I was able to go home a few days later, receiving most of my treatment and check-ups via clinic visits. On the 26th, I didn’t feel well and developed a fever. Sepsis is one of the greatest risks of chemotherapy treatment. Similar to my previous sepsis event, I was taken to the local emergency room, and subsequently to the Johns Hopkins PICU. Don’t get me started about what happens when they spell your name wrong in admissions! I was able to leave the PICU a few days later, but I can’t even begin to explain how disappointed I was, knowing that I would be missing the beginning of Camp Sunrise. I was heavily involved in much of the planning, and was really looking forward to serving as co-LIT director. Everybody at Hopkins knows how important Camp is to me, and they’ve always tried hard to let me go (since I seem to be in the hospital in late July a LOT!) Even though I was still really weak from the septic shock, and needed lots of platelet transfusions, the doctors agreed to release me from the hospital and let me go to camp, since there’s full-time medical staff. Camp Sunrise was harder than I expected. I was on pain medication because my mucositis (think cold sores over your entire mouth, throat, and esophagus), extremely weak from the septic shock, and my blood counts were low from the chemo. I stayed in my room and slept a lot of the time. Matt visited me often, and I was really thankful for his company. I hated not being able to help as much as I normally do. Despite all of those things, I was still glad to be there with so many of my camp friends. With their help, I made it to the Camp Sunrise dance – which is always the highlight. By Saturday, I was exhausted, the pain from the mucositis was becoming unbearable and I knew I was dehydrated. I was actually anxious to get to the hospital. Once there, I accepted narcotic medications for the first time. I didn’t like them – or the alternative. I was in a continuous fog over the weekend. I spent an hour trying to eat a single piece of watermelon cut into Skittles-size pieces, but it was too painful to eat. I coughed up strings of mucous. On Tuesday night, I got another fever. My heart rate was high, and I couldn’t keep my oxygen levels up, even with the tube in my nose, so I went back to the PICU. In February, I had jotted down some notes on my iPad regarding what I wanted if I died. I told my mom where they were before they took me down to the PICU. I don’t remember much about the next 36 hours. I was still getting a lot of pain medication and I slept most of the time. On Wednesday night, my condition worsened. Even though I was on a ventilator, it was hard to breathe. Mom rubbed my arm. She told me how strong I was, and how much she (and everybody else) loved me. She also told me that it was okay to let go if it was time. Dad and Matt were there too. They didn’t bring Susie in, which was fine with me. I didn’t want her to see me with that tube, unconscious. They sang to me. They sang “The Farmer in the Dell” – my favorite bedtime song when I was young. They sang “You Are My Sunshine,” which was Matt’s bedtime song. They sang “Lean on Me,” which is always the final song at Camp Sunrise. As they sang, I heard God’s voice in my other ear – singing those same words “Lean on Me.” With those words came peace. That’s when I knew. There was no longer any reason to fear death. I conquered my last fear. Let the story I've written Be something worth leaving behind When I'm gone Tell them I laughed more than I shed tears When I'm gone Tell them I stared down all my fears from When I’m Gone, by Craig Morgan Postscript: Obviously, these aren’t Karen’s words. The note on her iPad said she hoped we could maintain and continue her blog in some way. This is an attempt to include the final steps of her journey through her eyes. Her actual journey may have been much different, and she probably would have done a much better job of telling her story. To the other patients and families who follow this blog: Don’t lose faith. Everyone’s journey is different, but we believe there are lessons we can all learn from the courage, optimism, and spirit that Karen carried through her journey. We don’t know exactly what our next steps will be for this blog … part of it will be our story as we cope with our loss. We’re also interested in adding others’ voices to this blog. Please contact us with suggestions and input. Karen Shollenberger: 7/11/1994 – 8/10/2017
http://www.haightfuneralhome.com/obituaries/Karen-Shollenberger/#!/Obituary https://thetriangle.org/news/karen-shollenberger-1994-2017/
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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