Today is Karen’s birthday. It’s a difficult day. I love to get messages from family and friends who are remembering her today, but I hate that she needs to be remembered – she should still be here, celebrating her own birthday, and getting her own messages, living her life. So I read the messages, smile, and cry. Karen rarely celebrated a birthday without a castle cake, so we made one. We couldn’t decide if it should be a beach scene, or a concert venue, so we combined them. We had a stage with a full band (two guitars, keyboard, drums, and a lead singer) and large speakers, and even a light show on the big screen. There were spectators with beach umbrellas, and lots without them, a lighthouse complete with a keeper, and a heart-shaped island. We were thinking it should be a Kenny Chesney show, because of course he would have a show on a beach, but somebody suggested the band should be called “Bearly Breaking a Sweet” instead. Since I last posted anything, the world has certainly changed. A whole new vocabulary has become necessary – who would have put “social” and “distance” together in a phrase before the world was overtaken by coronavirus? And masks used to be for oncology patients, not every person you see, everywhere you go. But not anymore. During the lockdown time, I thought of Karen’s transplants, and the activity and travel restrictions because of being very immune compromised. After the first transplant, there was approximately a month in the hospital, and then the rest of the first 100 days was supposed to be within 30 minutes of the hospital. We don’t live that close, so we stayed in an apartment provided by the Believe in Tomorrow Children’s Foundation (believeintomorrow.org) in Baltimore. It was a lot like the lockdown – we only left for food and medical appointments. And like the lockdown, we opened back up slowly, with constant hand washing, and Karen wore a mask EVERYWHERE. I don’t want to be political, but when I hear people complain about wearing a mask, I just want to scream at them. Karen wore that mask through her initial treatment, and again during all of her relapse treatment, and she rarely complained. It must have been much harder, too, because she was the only one wearing one, so she really stood out, not like now, when an unmasked face is unusual. During Karen’s transplant times, she had paper chains with jokes or song suggestions or links to interesting things, and each day she would open one. It was a great way to mark the days off – the links were numbered from 1 to 100 – and feel connected to the friends who had helped create the chain. {Karen posted instructions for how to make a chain in the Resources section on this blog.) If I had been organized, I would have posted one of her chain things each day during the lockdown time. I still can, if anybody is interested. Let me know. I went to Florida with my sisters just before life got insane. So much fun, and so important to spend time together! We went to see my dad, went to a beach, put together a puzzle, did an escape room, played shuffleboard, saw manatees, and did a couple of home improvement projects. One sister runs a college health center, and some of the students had gone to Italy for their spring break. Italy was a hot spot, and coronavirus was barely on the radar of anybody here, but her vacation was filled with meetings about what to do with those students when they got back. It turned out not to matter, since everything on campus ended for everybody anyway. We were supposed to volunteer at SunSibs again, but they decided to have virtual camp instead. Each camper or family got “camp in a box” delivered, and there was a platform to host group chats and post pictures. They had virtual polar bear swims, held their dance, and even managed to get some pranks in. It was a wonderful experience! The planning committee did an incredible job. Not surprisingly, Camp Sunrise will also be virtual this year, and I’m sure it will also be amazing. Steve has been doing his best to keep us busy but socially distant. There have been hikes, kayak trips, and many bike rides. I love the hikes and bike rides, and I’m very happy to be the designated driver on the kayak trips. I did go along on one kayak trip, with some friends. We went to Mallows Bay, on the Potomac River. There are a lot of scuttled World War I cargo ships there, and you can kayak around the remains of them. Some have become islands, with trees growing in them, and there are a lot of birds. There are also beaches nearby with fossilized shark teeth and manta ray jaw pieces. They were all much smaller than I thought they would be, but once we knew what we were looking for, they weren’t too hard to find. A lot of the places we go are nearby, and we’ve been there before, frequently with Karen. Each time we go now, I remember those other times with her. I’m waiting for the memories to just make me happy (that’s what the books say will happen, eventually) but I’m not there yet, and it still makes me sad. Karen loved to take pictures, so I try to take some of the ones I think she would have taken. Hers would have been better!
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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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