One year ago, our world fell apart. I know, with a cancer diagnosis, death is always there as a possibility, but you don’t really think about it, because you have to believe your loved one is going to survive, especially when it’s your child. Even as Karen had relapse after relapse, I believed the doctors were going to find the next thing, and it was going to be the one that fixed her. Even when she died, things were set up for her to participate in a study that could have been the one. She only did that last round of chemo to keep the disease level under control until the study was ready to go. Even the doctors didn’t really seem to think she wouldn’t make it, since they used the chemo that was safer for her heart long term. Unfortunately, the different formulation was stronger than they expected, and longer lasting, and Karen just couldn’t take it. I hope they learned from that, in case they need to use it again.
We’ve gotten cards, emails, text messages, and booklets from very thoughtful people, and I woke up this morning to messages from Karen’s friends, who are planning to honor her today. I appreciate all of those people, telling me they are remembering Karen. We will spend the evening with friends who loved Karen, which will be wonderful. As I go about my normal boring day though, doing laundry and washing dishes, driving Susie to her activities, I’m crying, and missing my daughter. Life goes on without her, because it has to, but there are moments when it’s just so hard.
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I sit here crying, thinking about all I have lost in the last 20 months. My brother, my daughter, my brother-in-law who was like a brother. Of course, that’s not to say I don’t still have a lot of wonderful people in my life – but sometimes I’m overwhelmed by the loss. Karen’s birthday was three weeks ago. I knew it would be a hard day for me. It started with tears (of course!) and lots of messages from family and friends remembering Karen. A lot of tacos were eaten that day! It didn’t start with Timehop for me. Apparently they had some sort of data breach, and everybody was logged out. Karen must have logged in through Facebook, so I couldn’t log her back in, since her Facebook account can’t be accessed anymore. I tried (and tried and tried) to create a new account so that I could continue to feel that connection to her each morning, but gave up after a few frustrating days. Another day, another lost connection to Karen. I miss it so much, especially as I look through the pictures for this post. It had so many great quotes, and family memories, and it made me laugh (and cry!) We didn’t celebrate Karen's birthday in a conventional way. I left around lunchtime to begin my trip to Maine to see my mom and the rest of my family that lives there. I actually ate pizza for dinner on Karen’s birthday, one of her less-liked meals. The rest of the family did eat tacos, though, and played games, so there wasn’t a shortage of Karen-activities here at home! While I was in Maine, we spent some time on Eagle Island, where my sister and her family have a house, and where the picture of Karen on the swing was taken. Last year, when we went to Maine just after Karen died, Steve and the kids went out there, and he took a picture of the empty swing. I thought about taking another one, but didn’t. I thought about taking a picture of somebody else on the swing, but didn’t. I enjoyed my stay on the island, and only cried a little bit as I thought about how much Karen loved it there. We have a lot of family birthdays in July, so we had a large family gathering with tacos and a castle cake. The cake making has moved on to the next generation, with the majority of the work being done by Karen’s cousins’ kids, with supervision (and construction assistance) provided by the cousins. It makes me happy (as I cry!) to see the younger ones enjoying it as much as Karen did, and knowing that their parents will continue the tradition. My mother lives in Maine with some of my siblings and most of their children (and grandchildren.) Mom is 87, with a list of ailments. After my brother died, her depression worsened, understandably. When Karen died, I didn’t want to tell her, because she was feeling a little better, and I didn’t want to send her back down where she had been. Of course, we had to tell her (she kept asking where Karen was, and I am a terrible liar) but fortunately it didn’t send her as far down as I thought it might. Her general decline has continued, though, and it has reached the point where she only gets out of bed when forced to, either to use the bathroom, or because her caregiver won’t bring food to her in bed. (Some do, I didn’t.) It is very hard to watch this woman who was once so active, and now chooses to barely move. It is very frustrating to see a person who has the opportunity to live, and chooses not to, when so many who wanted to live so much are gone too soon. Our vacation this year was a trip to Michigan to visit family. We stopped along the way there, and the way back, to see some sights, including Cedar Point, which was on Karen’s list of places to go on the trip she missed last year. Karen would have loved Michigan… In addition to being a beautiful place to visit, almost every radio station we found was a country station! Karen lost her paternal grandmother when she was 8 years old to metastasized breast cancer. When we took Karen to the hospital on the day of her initial diagnosis, I didn’t want them to mention “cancer” to her because I knew it would scare her silly, since that was her only exposure to the word. Of course, they did, and she was scared, but she was strong and faced whatever they threw at her. When her grandmother’s doctor recommended chemotherapy for the breast cancer, the response was, “I’m not putting that poison in my body.” When Karen’s doctors recommended chemotherapy, our response was, ”Where do we sign?” At the time of her grandmother’s diagnoses, there was some discussion in her extended family about chemo, and I remember some family members saying, “chemo kills people.” At the time, chemo was all there was to kill cancer. Although I know that chemo saved Karen when she was 10, I also know that chemo killed her when she was 23. I know that left untreated, the leukemia certainly would have killed her, and the doctors did the best they could. None of this knowledge makes any of my loss any easier. I hope they learned something from everything she went through. Treatment has come a long way, but there is still a long way to go. We made castle cakes at Camp Sunrise this week. I had been to Camp to drop Karen off a few times, but rarely inside the buildings. It was Karen’s place, and she didn’t seem to want me in it when I took her there – it was always a quick goodbye, and she was off to her camp family. So when we went there for the cakes, it was actually much harder for me to be outside than inside. I guess it was good that most of my time was inside! As usual, Karen’s camp family made us feel welcome, and told us how much they missed her. Of course there were lots of hugs and tears. The kids didn’t care about any of that, but they were almost all interested in the cake and the candy! It was interesting to see how they incorporated the “Mad Science” theme into their creations. There were robots, planets, spaceships, ‘sharknado,’ and other unidentified objects. A huge thank you to the families on Susie’s soccer team who helped us bake enough cake for 12 cabins! There are things to look forward to, many positive, one negative. Karen’s cousin is getting married, and a large family gathering is always a good thing. Some old friends from Massachusetts are visiting soon, which will be a wonderful distraction from the one year anniversary that’s approaching faster than I want it to. I have no idea how I’m going to get through that day! Of course, I will somehow, probably with lots of help from my friends.
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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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