It has been much longer than it should have been – I feel like I’ve let Karen down a bit. But these are hard for me to write, and I can frequently find something I’d rather do than spend a few hours crying. Life has continued to be strange, but as with most things, it has become the new normal. I always remember to take a mask to the store, but somehow seem to forget when we go to a soccer game. My own life isn’t actually that much different, other than the mask. I still go for my morning walk with the neighbors, except now we walk on opposite sides of the street to maintain our distance, instead of single file like we’re supposed to. Fortunately, there’s not as much traffic as before. I still go to the store, but not as often, and almost exclusively where I can scan and bag the groceries as I shop, for less handling and interaction. I haven’t gotten a haircut in months – my hair is longer than it’s been in 40 years! I’m enjoying the new experience, but I think it will end up short again eventually. Susie’s sports resumed, so there was driving to practice and going to games for a while. It’s nice to have Susie home during the day, and I’m sure I’ll miss her when they go back to school in person. I can’t even imagine if Karen was in treatment now with all of this. She hated being in the hospital alone, and didn’t even like to go to appointments by herself. This would have been very stressful! But as I sit here typing and crying, I wish she was still here, even if she did need to go to the hospital a lot. One of Karen’s cousins turned 40 this year, as part of the large number of July birthdays in our family. She was outside playing with her daughter when a butterfly appeared. She took a few pictures – it was that close - and sent them to me, saying that she always thinks that Karen is paying her a visit when she sees a butterfly. I was driving when the messages came, so Susie read them to me. I had forgotten how hard it is to drive while you are crying. When I finally replied, she sent a video, showing the butterfly following her daughter around the yard. She said it stayed around them for a couple of hours – it was definitely a visit from Karen. She loved Maine in the summer, and would have wanted to celebrate the big birthday! In my last post, I mentioned how I wished Karen was still here to celebrate her own birthday. Recently in a dream (most of which I completely forget) there was a fancy custom chocolate bar, and it was imprinted with the words “Karen is celebrating lots of birthdays.” At the time of the dream, it made me so happy! There was another dream, months later, where I was getting a haircut, and Karen was in the chair next to me. She looked so good, and so happy. I love those dreams, and I wish I had more of them. Camp Sunrise was virtual this year, of course, and one Sunday in July we went to help pack the “camp in a box” boxes that went to each camper and staff member. It was so nice to see so many friends, after months of isolation. We had also volunteered to deliver some of the boxes. Some of the parents sent me pictures of their kids unpacking their camp supplies, and they were all so excited! Matt was a counselor, and he came home to do all of the camp activities – castle cake, smores, tie-dye, polar bear swim, etc. It’s not the same as all of the kids all being together, but I’m sure they all had a great time! We passed that other “milestone” too. I got lots of messages of love and support, and even though they make me cry, I will always appreciate knowing how many people remember Karen, how many lives she touched, and that so many people take the time to reach out. I also love the random messages from her friends and mine when something reminds them of her. Steve has continued to plan outings for us, which has been great. Hikes, bike rides, kayaking, and even a camping trip. We didn’t manage to go on a summer vacation because of all of the travel restrictions. I wanted to go to Maine, but was afraid of bringing illness with us – I’ve read too many news stories about family gatherings becoming superspreader events. There aren’t any news stories about the gatherings where nobody gets sick. Traditionally, my family gathers at Thanksgiving, and I was really looking forward to it this year. At first, we were planning to arrange testing and go anyway, but the numbers are high here and in Maine, so we stayed home. I have a friend that I met through Karen who recently got a cancer diagnosis. It’s never easy, and her experience has been extra difficult. I started to send her quotes and jokes and website links from Karen’s transplant chains, to try to cheer her up a little. I have enjoyed reading what people submitted, and seeing who sent things, since Karen didn’t really share them at the time. (She had so little privacy then, if she wanted something for herself, it was the least I could do.) I have used all of the chain links, so now I’ve started to go through things in Karen’s room, along with a poster I found in the basement that she must have had at college. It’s full of quotes, all positive or inspiring, so I hung it up on the wall near our computer. It makes me feel a little better to use things Karen had to help other people. Susie was instrumental in getting us to take on some long-ignored projects this summer. We rebuilt the shed around the pool equipment, fixed a drainage problem near the basement steps, and worked on an electrical project in the wood shed, among other things. Occasionally I get motivated enough to go through something in Karen’s room, or through things she brought back from college that have been sitting in the basement for a long time. (That’s how I found the quote poster.) Some of it is easy – I can recycle her notes from various college classes without any emotional stress at all. Some of it is much harder. I’ve kept a folder of things she wrote. Some of them made me cry as I read them, and some made me laugh too. There are blankets and other things that people gave her, that I’m planning to donate, finally. At first I kept all of it, but I’ve reached the point where, if I don’t know where it came from, it probably needs to go. So there’s a donation pile. It’s a process. If you gave her something and you might like to have it back, let me know.
Wear your mask, wash your hands, get your flu shot – there are more immune-compromised people around than you realize.
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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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