Once again, it’s been much longer than it should have been. I was feeling very stressed after I wrote the last post, and kept telling myself I would be better after this event, or that event, but it took much longer than I expected. And then it had been so long…. and these are so hard… so here it is, already a year since the last post! (I started this in August, and have had to edit what I wrote then because of how much time has passed.) I think part of why these are so hard for me is that my life isn’t very exciting, and I can’t imagine people really want to know what’s going on in it. Although I still miss Karen all the time, how much can I talk about that? Kind of repetitive and boring, really. But she didn’t want this blog to die with her, so I keep plodding along. We got our Christmas tree… well, Christmas shrub, really. All three kids have always liked fat trees, and I think they’ve only gotten fatter over the years. We always go and cut our own tree. The year of Karen’s treatment at NIH, she got a special pass to come home for a day to go get the tree. She had a way of convincing doctors to let her do what she wanted to do! I can still picture Matt pushing her to the trees on the cart they give you to bring the tree back after you cut it. In 2020, we went to four, yes, four, different farms before we found the tree we got. Notice that I didn’t say the perfect tree. We didn’t start our tree expedition until after 2, and it’s dark by 5, so we didn’t have time to find the what Matt and Susie consider to be the perfect tree. All of the trees were about 6 feet tall, instead of 8, and perfectly tree shaped, instead of fat. The one we got really did look more like a shrub than a tree, fatter than it was tall! It didn’t have a single center trunk at the top, so we made one with two branches and a zip tie. We built a platform to put it on, and eventually it looked more like a normal tree. It turned out to look great! During a “get rid of stuff’ mood one day, we got an old laptop out of the other room, and Matt decided we should clean it off and get rid of it (12 years is apparently too old) since we have a slightly newer one – 8 years old instead. We turned it on and eventually remembered the password. Apparently last time we used it, I left a browser open, and I must have been reading one of Karen’s blog posts. Of course, I had to go back and read it, and of course I sat here crying. It was around the time of the relapse news from NIH, around the time of her second transplant. The post was titled “Tell them I faced down all my fears” and it just reminded me again how strong Karen was. I miss her so much! (Note – we didn’t clean it off or get rid of it. It’s back where it was, under the bed. But we did get rid of our original desktop computer, circa 1997!) At some point in early January, as my dad approached his 94th birthday, I mentioned to him that it was getting to be time for him to move back north, nearer to family, instead of being in Florida by himself. He had great neighbors there, but they weren’t year-round residents. Even though he was still driving – which he shouldn’t have been – we were worried about how things would progress. I told him that when he got to be 95, he would have to come up here, giving him a year to get used to the idea. I didn’t mean that he would have to come up in January (who wants to move north in the middle of winter?) but more like next summer. Well, he surprised all of us by saying he was ready to move. He started packing boxes, giving me frequent updates on his progress. I even changed the ringtone on my phone for his number, so I would know immediately that it was him. He sold his car and his house, and a group of us went to Florida in April to move him here, where he could live in the in-law apartment attached to our house. It has been a bit of an adjustment (for everybody) having him here, but overall, it’s working out fine. I had thought he would be more active than he is, after hearing about all the things he did every day around his house in Florida. But then I remember, he’s 94, and I decide he can sit as much as he wants to. There are still things he can’t find, which we might have left in Florida. We didn’t clean out the house completely, and he hadn’t quite finished packing when we got there, so I’m sure there were many things he would have packed that we didn’t know to take. Oh, well. On Steve’s birthday, we had our usual brownies and ice cream. Susie had soccer practice, and Matt baked the brownies while we were gone, so they were still warm, but not too warm (we put candles in too warm brownies once, and it didn’t go well.) They got out the plates, and I looked at them and almost said, “Wait, there are only 4 plates,” but then I caught myself. Of course there were only 4 plates – there are only 4 of us now. It amazes me that I can still forget that she’s gone, even after all this time. One evening, we were watching television, and the show was about a single dad with two kids. The wife/mother had died a few years before. She had been a teacher, and some friends had organized a project to paint a mural in her honor at the school. The dad had been asked to say a few words at the unveiling, and he was working on his speech. They were reminiscing, and the younger daughter got very upset, because she didn’t have as many memories of her mom as the older one, and she felt like she was forgetting her mother. I sat here on the couch and cried, just like I am now. The forgetting is the worst thing. I can’t forget Karen’s face, because it’s all over my house, her voice isn’t. And for most people, memories fade. Susie had a virtual school event in the spring, and one of the speakers was a guy who spoke at a lot of Karen’s school events. It’s been a few years since I’ve seen him, but I immediately recognized him. I wished I could have laughed about it with Karen – I know she would have found it funny that he was still there, speaking at high school events, still saying the same things as he did 10 years ago. I texted her friends, and they all remembered him and his classic lines. I’m glad I have those friends of hers to share things like that, but I wish I had Karen! A few months ago, my phone mysteriously deleted a bunch of my contacts. The numbers were still there, and the messages, but the associated names were gone. Not all of the contacts, but a lot of them. It was very strange. I haven’t removed any of the contact information for the people I’ve lost over the last few years, but that event did it for me. The other day, I typed in my brother’s number, and there were all of the text messages, still there, with no name attached. Of course, I put his name back in. Creepy, probably – oh, well. It made me smile to read them again, and cry too. He would have been a grandfather this year, and he would have loved that! One day I was cleaning out the pantry. I won’t say how much was thrown away. The highlight was coming across a bag of bug shaped graham crackers that we got at CHOP in Philadelphia. They had these crackers in their snack area, and I used to feed them to Karen when she was waking up from her versed nap after a procedure. I would place a cracker on her tongue, and she would tell me what kind of bug it was. Yes, she was at least 20 at that point – you take whatever entertainment you can find in the hospital! Anyway, it made me happy to remember the game we played, and I almost kept the bag of crackers, so that I could remember it again in a few years. Cicadas! We had lots of cicadas. After a slow start here at our house, they got to be very loud! It was strange how much the volume could change just by moving a short distance. I took videos to send to my extended family, to show how loud they were. And they were everywhere! Last time they were here, Karen and Matt were in elementary school, and some of their classmates brought chocolate covered cicadas to school to share. Months later, there were still signs of them in the trees – the tips of the branches were dead where they laid their eggs. At least a year ago, I lost one of Karen’s bracelets – I know I wrote about it here – and I was so upset!! I looked all over the place, in the house, out along the road where I walk every day, and eventually I gave up. On one of my dad’s active days, he was edging the front sidewalk. We’ve never done it, so you can imagine how much the grass had grown over the concrete. Anyway, on our way to the door one day, Susie looked down at the newly exposed dirt right next to the sidewalk, and saw the missing bracelet! We pulled it out of the dirt, washed it off, and it’s back on my arm with the other ones Karen was wearing at the hospital that last week. Camp Sunsibs and Sunrise were both virtual again this year. Covid numbers were ok then, but unless you keep the active treatment kids home (and their siblings from Sibs) it’s too much of a risk, so really there wasn’t much of a decision to make. We helped pack boxes again, and Matt and Susie enjoyed the activities together on the Sunsibs weekend. Hopefully next year, there will be a way to have a more normal camp experience. We went on a couple of trips this summer, but unfortunately haven’t made it up to Maine like I had hoped to. We spent a week in Vermont, where we did a lot of hiking, learned too much about Calvin Coolidge, played mini golf, ate ice cream at Ben and Jerry’s, bowled on a granite bowling alley, and looked for moose. The scenery was beautiful, as expected, and it was very nice to be able to be somewhere else. We also took a long weekend to see a couple of colleges, to give Susie some idea of what different campuses look like. Of course there was also hiking and mini golf on that trip, too. Lots of waterfalls! So nice to be somewhere else for a while. Covid has gone on too long. Susie’s senior year is here - time flies. All students in school, and sports have resumed like a regular year. So far, so good. There have been some cases in Susie’s school, but nothing that would be considered an outbreak. They had their homecoming dance on the football field, which was wet from rain earlier in the day, and it was a cold night. At least they had it, and the kids will always remember it!
When I’m doing things around the house with music on, some songs sure do hit me hard! “Don’t take the girl” had me bawling one day! Not that it takes a lot to get me crying. Usually it passes pretty fast, but driving while crying hasn’t gotten any easier. I remember when the Rascal Flatts song about the girl with leukemia came out, during Karen’s first treatment, I couldn’t listen to it at all without crying. And even now, still crying. (Did I mention how much time I spend crying when I write these? It’s a LOT.) And last year, they came out with another song that makes me cry, How they Remember You. To those of us left behind, it’s remembering the ones who left us too soon that’s so important. I know Karen is remembered, and I’m so grateful to the people who mention her to me. Thank you! I’ll try not to let it go so long next time. I don’t want to disappoint Karen again!
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What sets your blog apart is your genuine authenticity. Your passion for your subject matter shines through in every word, making it easy for readers like myself to connect with your message on a personal level. It's refreshing to encounter a writer who isn't afraid to be vulnerable and share their own experiences.
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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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