Since my last post, we have marked the anniversaries of three of my family’s losses – David, Dean, and Mom. Not celebrated, but observed. As Matt said, they’re not things to celebrate. They are very quietly observed – a few text messages, maybe a meal they would have liked. These are hard for me, but not nearly as hard as Karen’s anniversary. We also had Thanksgiving and Christmas, which are both happy times, full of family that we don’t see often enough. I’m a little bit jealous of people who live near their extended families and can see them without a (minimum) two-hour drive. My birthday was a cold rainy day. It was filled with greetings and love from family and friends. (I know someday, probably soon, I will miss the hour+ phone call from my father as much as I miss the much shorter call from Mom.) It was also filled with tears and missing Karen. I went to the store, crying all the way there. I got my things, and went through the line to pay for them, and realized I didn’t have my wallet. I drove home (not so many tears) sat down to type this so I wouldn’t forget it (lots of tears) and drove back to the store (tears again, but not so many.) I wanted to accomplish something, so I looked at Christmas card options – more tears. Fortunately, not every day is like that. This year we got our Christmas tree the weekend after Thanksgiving, because we were all together, and the next opportunity for that to happen seemed like it might be too late to get a good tree. Of course, then it sat in a bucket in the driveway for weeks. Eventually, it made the trip inside, and got lights and decorations. We made our Christmas cookies on Christmas eve, which took longer than it should have. I am the designated roller/cutter/baker, and the rest of them decorate. I always take some pictures, and this year I looked back at the old ones in my phone from 3 years ago, when Mom was here for Christmas. She and Karen sat side by side, decorating cookies. We had just lost David and Mom was depressed. I was not as sympathetic as I should have been, when she talked about how it was to lose a child. But she joined in the cookie project, and she enjoyed it, working with tweezers to get her cookies to look just right. I have never had that level of patience for decorating a cookie, but Mom did, and so do Steve and the kids. The cookies always look great, unless I cook them too long! We went on our usual January ski trip, the one that Karen always tried to be able to go to. When she was 10 and initially diagnosed with ALL, we went on this trip completely against medical advice. The place we go is in the middle of nowhere, and Karen was actively getting chemo at the time. A fever meant a hospital stay, and it was over an hour to a hospital of any size where they could deal with an oncology patient with a port. We went anyway. And Karen insisted on doing our usual route, multiple miles out in the woods, with no easy way to bail out if it was too much. I still remember towing her across the flat part at the end, when she got tired. Of the three kids, she most enjoyed cross-country skiing. The others do it, but much prefer downhill skiing. When I go downhill skiing, I always feel like I’m slowing them down, which isn’t fun for any of us. Whether it was her preference or her health, she didn’t feel a need for speed or steep hills, and we spent a lot of time together. Another place for me to miss Karen. Sometimes when the ski conditions aren’t great, we need to find an alternate activity. A couple of years ago, we went to the Corning Museum of Glass, where we only saw a fraction of what is on display. This year, it was snowing on Saturday, but there wasn’t enough to ski, so we went back to the museum. Apparently I have lived in the south longer than Steve, because I thought we were crazy to drive an hour each way during a snow event, but he was fine with it. Of course the museum reminded me of Karen – she took so many pictures of the beautiful things on display! I didn’t take any pictures of the displays this time. And I still haven’t seen the whole thing, so we’ll have to go back again. The woman at the lodge where we stay on the ski trip is a quilter, like Mom. Last year I took some of Mom’s fabric when we went, and this year, Carol had made us a quilt from some of it. It’s beautiful, and I will keep it on the couch. It will remind me of Mom every time I use it. The hospital holds a fundraising event every two years for Camp Sunrise and Sunsibs, and this year they somehow talked Matt into speaking. He will do a great job, and he is a perfect person for it, because he goes to both camps. He asked me for some pictures of the three of them, which I ignored for a few days. Eventually, I went to the slideshow we made for Karen’s celebration, and I cried and cried. So many good memories, but it made me miss her so much! As much as I’m looking forward to the Gala, I know I will cry through Matt’s entire speech. Every so often, I think back to that awful time at the end. I remember being very unprepared for those last few days. When Karen’s oxygen level was dropping and they had to move her to the ICU in the middle of the night, it didn’t occur to me that she would be gone in two days. When they suggested the breathing tube, I didn’t know she would never be conscious again. Maybe they said that she would be sedated, but I guess I didn’t hear it, or didn’t realize they meant FULLY sedated. And when I went home, and Steve called to tell me to come back in, I still didn’t really believe it. When I left, they said she was doing better. And I feel so much guilt, which the rational part of me knows I shouldn’t, but guilt isn’t a rational thing, is it? I didn’t tell the ICU staff that Karen was very sensitive to sedation, so did they give her too much? Was that a factor in her heart rate slowing? And when Matt and I left for the hospital, I didn’t wake Susie up to take her with us, partly because I didn’t want her to see Karen with that nasty breathing tube taped to her face. I didn’t want that to be her last memory of her sister alive. But in doing that, Susie didn’t get to say goodbye. I’m sure that Karen would have agreed with that, but I don’t know what Susie thinks about it. There are lots of people who would just ask her, but Susie really doesn’t like to talk about any of that, and certainly not with me…. So much crying! I hope this doesn’t sound like I spend all of my time crying or feeling guilty – definitely not. Most of my days are just like everybody else’s days. But some are not, and that’s normal, even now.
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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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