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.
Remember to give blood and platelets! Somewhere there is somebody who needs it.
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I’ve been choosing the title for my blog post from one of the Timehop quotes, but this time it’s from a new friend who joined my club, by losing her son to cancer recently. She saw a sign with that quote on her way home from the hospital and got some comfort from it. It makes me so sad when I hear about another family going through this kind of loss. We watch our children fight so hard, and endure so much. We do everything we can to help them, and our friends and our families give us all so much support and love and so many prayers. And then we lose them, our beautiful children, who have so much potential. Having cancer changes the kids. The ones I have seen have a different perspective – they know that life is precious, and they want to give back. Karen had many organizations she supported – she volunteered, she walked, she raised money. She joined a sorority at Drexel that was service-based. These pediatric cancer patients accomplish so much, and could have done so much more, if only they had survived. One of Karen’s doctors recently left Hopkins to go to work for a pharmaceutical company. I told him that the pressure is on him, to help the kids, because we’re losing too many, and he can’t let them down. We continue our list of “firsts” without Karen. Mother’s Day was dreary and soggy. There was a gift (from Karen?) of not going to Virginia for soccer at 7:30 AM, which was nice. There were also some delicious chocolate covered strawberries, which Karen would have loved. And there were some Timehop memories discussing last year’s Mother’s Day gift, and Karen’s input into it. We all went to the Camp Sunrise Gala, which is their biggest fundraiser. They have the Gala every other year, and it was on Karen’s calendar on her phone. Things like that make me sad – the events I know she wouldn’t have missed, given even half a chance to be there. Lots of her friends were on the Gala committee, and I’m sure she would have been, too. (That’s when I feel the worst about myself, that I haven’t stepped up and done some of what she would have.) It was really nice to see some of the doctors and nurses that were there. When you see these people every week, sometimes multiple times a week, they really are more than just your caregivers, and you miss them when that ends (abruptly!) I cried a little bit (of course!) with a few people, but overall it was a nice evening with good friends. Susie and Matt went to Sunsibs, the weekend camp for the siblings of the patients. Susie has gone for 6 years now, even though it is a major conflict with a soccer tournament every year. I know a couple of people who had a hard time with the idea of going back as counselors without Karen there. We went on Saturday, and did a castle cake activity with the kids, in memory of Karen. She never celebrated ANYTHING without a castle cake. I think the kids enjoyed it. There were a lot of variations on the travel/wonders of the world theme. My sister came down from PA to help me bake the cakes we needed for the 8 cabins – that’s a lot of cake! We planted some new flowering trees around our house. They will bloom in the spring, mostly with pink flowers. Karen took so many pictures of the flowers we have, and the trees in bloom. One of the new trees is visible from her bedroom window, and I’m looking forward to seeing it bloom next spring. She loved being outside, surrounded by nature, and I know she would have enjoyed choosing the trees and where to put them, and then watching them grow. I will take good care of them so I can think of her when I look at them. There was an activity at the elementary school where the kids went (and I still volunteer) that involved painting rocks for a rock garden. One of the staff members asked me if I wanted to paint a rock for Karen, and I asked her if she could do one instead. One day recently, she took me outside to see the finished product, and I had to guess which rock was Karen’s. So much pressure!!! But it turned out to be easy, and it’s beautiful! Karen really was a ray of sunshine. Some of Karen’s friends came over the other day and spent the afternoon with us. It was wonderful to see them and catch up on what’s happening with them. We played cards, which Karen loved, and talked about the time they spent here with her, and how much we all miss her. Amanda gave us the beautiful picture she drew of Karen’s face, in treatment and out, all framed. For now, it’s here in the living room with the other pictures that I look at (and talk to, most days) and will eventually hang up somewhere. A lot of the Timehop memories right now are the text messages Karen sent and received last year about her last relapse. There are messages about having to cancel her dream trip, and about starting treatment (again!) and signing consent forms. It makes me cry so much more, to read them and know how it ended, but at the same time I smile as I read them and see how much love and support she got from so many friends and family members. I miss her every day.
I have lots of things that remind me of how long Karen has been gone. My Timehop streak, over 200 days now, which I didn’t start immediately. The unread text messages on her phone, which it reminds me are from over 250 days ago. The now very numerous list of “firsts” we’ve had without her. But there are still some rare moments when my brain is tricked into thinking that she’s just away. Those don’t last very long. Easter was another one of those holidays that Karen enjoyed. She was always the one to find a new way to dye the eggs, and the other kids liked being able to give her the black jelly beans that they didn’t like. I found a tie-dye egg kit this year, and we tried it in memory of Karen and David, both masters of the art. I’m sure they would have done it better, but we did our best! Last year, she wasn’t home for our egg dying (was she preparing me for the future??) so she found a friend in Philadelphia who had never dyed eggs before, and they had a great time. Even though she missed doing eggs with us, she certainly never missed the family dinner – we would pick her up at the train station on our way up to PA, and drop her off there on our way back. We went this year, and of course it was good to be with the family. I only cried a little. HA! We went to California for Susie’s spring break. One of our destinations was Joshua Tree National Park, which was on Karen’s itinerary for the trip she didn’t get to go on. We were there at the perfect time, when the flowers were blooming, and I thought of her a lot. I tried to take lots of pictures of the flowers, because Karen always took pictures of the flowers, even though she wouldn’t have been there when the flowers were blooming. I thought of her while we were hiking, and wondered which hikes she would have done, and which would have been too long for her, and if it would have been too hot. She had trouble in the heat. We also went to the San Diego Zoo and the Safari Park, which I think also would have been on Karen’s itinerary. I took pictures there, too, but again, I know hers would have been better! There is an annual Tribute Service at the hospital. It is a beautiful event, with pictures of all of the kids displayed around the reception room, and a remembrance service with a slideshow, and the names announced and candles lit for each one. As they call the names, the people who are there to remember them stand up. You can go to it as often as you want, not just this first year. The hospital staff sees a list of families who are attending the service, and there were a few nurses and other caregivers there, which was wonderful. Some of them make a point to go every year, so I’m already looking forward to going back next year, just to say hello. When you spend so much time with people over 4 years, it’s nice to see them once in a while to catch up. There were also some friends from Camp there, and it’s always great to see them. Some of the kids were just tiny babies, and it broke my heart to see the pictures of them, all full of tubes. It made me wonder if those parents had a chance to hold their babies without any tubes. I was so fortunate to have Karen for so long, and to now have her friends. Karen had so many wonderful friends, from elementary school all the way through to college, and I’ve kept in touch with many of them. Some of them text me when they’re thinking of her, or I will send them things that pop up in Timehop. I appreciate the continued contact more than they can ever imagine! This grieving process continues – what else can it do, I guess. Some days I don’t cry at all. Those are the days that I am busy doing other things, not going into her room (which still looks like she could come home and climb in bed!) and ignoring the bag on the mantel next to the TV. I am very good at not seeing the things that are here every day, like that bag, and the clutter everywhere (which explains the constant state of mess in our house!) and I can forget, sometimes, that this is Karen’s computer I’m typing on, even though it has her name, and I have to type in her password to use it, and the picture of her in Maine on the swing is the wallpaper. Most days I cry a little, just for a minute or two. I talk to Karen and tell her how much I miss her. Days like today, though, where I want to do a blog post, the tears just keep flowing. As a very wise niece told me, crying is completely normal, and memories are good.
I didn’t intend to post anything so soon after the last post, but something came up that has me back here. I said in the last post that I enjoyed looking at Facebook through Karen’s account, and the next morning, somebody memorialized it. As it turns out, anybody can initiate the process. It might just be a coincidence, but the timing certainly made me wonder. I am still devastated, and very angry. There may have been people out there who didn’t want me to see what they were posting, and those people could have contacted me to ask me to take them off, or whatever the term is. I never intended to be creepy about it, and would certainly have removed anybody who asked. As it is now, I’ve lost another connection to Karen. Not only were there family messages in there that were helpful to me, but there were friends of hers who contacted me through Facebook who wouldn’t know any other way to reach us. Also, Timehop, which is one of the things that gets me through the day, would show me pictures that she had posted on Facebook through the years, and now it can’t access it either. This isn’t something that can be undone, apparently, no matter how much you beg. Some might wonder why I don’t just get my own account, but that’s not really the point. I’m asking everybody who ever considered memorializing somebody’s account, PLEASE PLEASE check with their family first. Let them be the ones who make the decision!
I can’t believe it’s been 7 months already. Some days it seems like it was just last week, and some days it still seems like Karen is just away, and will be home to visit soon. Unfortunately, that never lasts very long. I continue to check Timehop every day. I have a streak that’s over 160 days. Some days make me laugh, and some days make me cry, but I’m so grateful to have the connection to Karen’s day, through the years. So much good advice! I know some of these are song lyrics. I wish I knew where she got some of the others. She had a book of quotes - I can add that to my list of things, to see if that's where they came from. I went to another family gathering that Karen would have LOVED last month. When the announcement came out on Facebook last year that her cousin was planning to get married in Puerto Rico, Karen was very excited. She loved to travel, and she loved her family, so this was the best of both. Of course, we didn’t get tickets right away, since Karen hadn’t been able to make long term plans for years. Then I gave up on the idea of going. I thought it would be too hard to do it without her. In January, my sister asked me if I wanted to go, and we made our plans. It was a beautiful wedding, and I’m so glad I went. Of course, it wasn’t without tears. There were a few famous criers in the group (including the bride) and we all cried when she brought out the pictures of the family members they had lost, that were to be put on the tables at the reception. David, Karen, and Dean were all in our family pictures. When I was packing for the trip, of course I needed some reading glasses. Susie had made us some sleeves to carry them in, and I picked up one of them, and there were glasses in it, so I stuck it in my bag. When I tried to use them, I couldn’t see a thing through them. I tried a couple of times, and eventually looked at the glasses more closely. They were Karen’s glasses, which I haven’t seen since August! And the sleeve they were in was a Christmas gift… so somehow, Karen found a way to go to the wedding! Karen was in Gamma Sigma Sigma at Drexel. It’s a service sorority, and she loved the girls, and the activities. They recently held a fundraiser for Camp Sunrise at Karen’s favorite taco place in Philadelphia. It makes me so happy that they have kept Karen’s memory alive, and that they chose to raise money for camp, which was very important to her. They also had a ceremony that evening where they remembered Karen with balloons. Thank you so much for the pictures, Alyse! And speaking of Camp Sunrise, last weekend was the Sunrise/Sunsibs reunion. Susie and Matt wanted to go, so we went. There were a lot of familiar faces from Facebook, but that’s only one-way, so they don’t necessarily know me, which is just fine. The ones I did know to talk to all gave me big hugs and told me how much they miss Karen. It was harder than I expected at first, but watching everybody have a great time connecting with friends and roller skating made it better. And they had a taco bar for lunch, which I will assume was in Karen’s honor (even though nobody said that… I know the person who organized the food was one of her good friends.) I've tried to take some of the pictures that Karen would have taken, on the days when it's just beautiful outside. She would have done it better! Here are my attempts, along with a paper I found in Karen's room. I wish I knew the story behind it! As I mentioned before, we’ve done a little bit of research into making Karen’s request a reality, regarding travel for oncology patients. It turns out that there are a lot of organizations that already do similar things. I have added links to them to the Resources section, under Travel Resources.
We got the Christmas tree, and put it up. Karen would have loved it. It took multiple days to get the lights on, all 2200 of them. And that’s how it stayed, until the weekend of Christmas. The only ornaments that were on it were the ones we made while trying to figure out what to make for Karen’s friends, and the beautiful taco ornament that Claudia sent. Eventually, the rest of the ornaments (or at least most of them) got on the tree. The kids each have some ornaments, and it was hard to put Karen’s on. She was supposed to do that! We also made our Christmas cookies that weekend, which was another one of Karen's favorite activities. Last year, Grandma was here, and she took our cookie decorating to new heights. This year, it was just the four of us. I know it's important to keep things as normal as possible, so we had the tree, and the cookies, and the cards, but everything is harder when it all makes you cry. I was dreading Christmas. We always spend the day with family, and Karen loved her family! It turned out that the week before Christmas was much worse than the actual day. I cried so much that week, but hardly at all on the actual day. The hospital sent us a card, with papers inside where staff members who knew Karen shared memories. It was very kind and thoughtful, and of course made me cry. We also got a card from the oncology child life staff. These things mean so much to me, to know that somebody, somewhere, was thinking about Karen, and took the time to share that with us. So, if you’re thinking about somebody, take a few minutes and send them a quick hello message. (this is something I need to do more often myself!) We went on our usual cross-country ski trip recently. I’ve always enjoyed it – the people are great, the location is beautiful, the food is delicious. Karen never missed this trip. During her initial treatment when she was 10, we went (against all recommendations from the doctors!) and had to give her chemo while we were there. When she was at Drexel, she would take the train or the bus to Harrisburg and we would pick her up on our way to Potter County. So of course, I was not looking forward to being there without her. On the positive side, everybody there already knew, so there weren’t any uncomfortable “where’s Karen?” moments. Some of the people who couldn’t attend wanted to see the slide show from the service, so we watched it (and cried!) I took pictures that I thought Karen would have taken, although I’m sure she would have done it better. It wasn’t as bad as I expected – I think Karen’s motto of “high hopes, low expectations” is still working for me. If I think it’s going to be awful, then it usually isn’t. On that note, I went to PA by myself for a baptism a few weeks ago, and the drive up there was awful. Karen definitely would have joined me, so I really was missing her a lot. I had quite a one-sided conversation with her in the car! It’s not really a good idea to drive while you’re crying. Last week, I wasn’t feeling well, and spent the whole day sleeping. It made me think of Karen, and how often she felt crappy, and kept going anyway. I can still see her working on her finals at NIH, when the CAR-T fever was starting. The work had to be done (although the teachers would have understood!) and it didn’t matter how bad she felt. I think it had gotten to the point where she felt crappy so frequently that having something to do was a good distraction. Just another reminder of how amazing she was, and how strong. Steve’s birthday was at the end of January, and it was another one of those “firsts” that was made a little bit easier by very thoughtful friends who invited us for dinner. The actual day was still off a little, but Matt wasn’t there for our brownies and ice cream either, so it wasn’t as bad as it could have been. I spent some of the day in Karen’s room, getting rid of stuff. Some people go through things immediately, but I’m not one of those people. I do a little at a time, and haven’t gotten rid of anything that might have meant even a little to Karen herself. So, it’s even slower than it might be. There has been some progress, though – it turns out Karen had a LOT of paper that I could recycle. There were old magazines, notes from classes, camp schedules, receipts…. But in all of that paper, I came across the Sunsibs logo that they’ve been looking for since last summer, so it was definitely a successful day. I also have lots of journals and notebooks to donate. Matt didn’t enjoy hearing that in 2005, Karen thought that Baltazar was nicer and smarter, when the boys were 8. The recent issue of Reader’s Digest that showed up here (our subscription lapsed many months ago) had a story about CAR T therapy. It was interesting to read it, but also a bit depressing, because she was SOOO close to success with it. It sure was strange to not see the magazine for months, and then have that be a cover story in the one that appeared. Some people would say that Karen sent it. Maybe she did – a travel magazine came in the same day’s mail! One of the things that Karen wanted us to do was to make it possible for other patients to travel, like she loved to do. We haven’t gotten that together yet, but in working on it, we’ve discovered a whole bunch of organizations that have the same idea. We are leaning toward “sponsoring” a young adult patient from Hopkins through one of those existing groups, but haven’t made any recent progress toward making that happen. We will get there, eventually. Here's a selection of Timehop wisdom. Karen passed away four months ago. It was very sudden, even though she had been in the hospital. She had been in the hospital so many times – why would we think that this time would be any different than the other times, when she recovered and came home? But she didn’t. When Karen was transferred to the ICU that last time, she told me that there was a file on her iPad that had some things I would need to read. She said it wasn’t as complete as she wanted it to be, but … I said ok, but of course expected that I wouldn’t need to read it any time soon. I guess she knew better than I did. As we read the file the next day through our tears, we were amazed at how much guidance she gave us for when she was gone. One of her requests was that we continue to post on her blog. We talked about how to do that. Obviously, we couldn’t continue it as what it was, Karen’s journey, without Karen. Steve didn’t want it to be all negative, all about death. Karen wasn’t negative! So here we are, four months later, and this is the first post. I think this needs to become a place to share our memories of Karen, and also our journey through life now, without her here, which is just not how it’s supposed to be. I miss her every day. So here we go… Sorry in advance for the lack of organization, but I will at least try to avoid typos! (I saw this sign while we were out yesterday, and realized that Karen was with us.) I have composed countless blog posts in my head over the past four months, or at least the first few sentences of them. (I have also composed countless thank you notes in my head, and they haven’t been written either.) I even sat here at Karen’s computer and typed one, but it didn’t get posted at the time, so I had to rewrite, and rewrite again. Those first few days were so hard. We decided to go to Maine for the weekend, where my family was all going to be together for a long-planned party. It was a beautiful distraction from the pain, being among all of those people who loved Karen as much as we did, and going to some of the places she loved. The picture of Karen on the swing was taken in Maine, on Eagle Island, and on that visit, Steve took a picture of the swing, empty. Of course there was a castle cake, and she was there, in spirit, guiding the construction of the taco, along with chips, salsa, and guacamole. We spent the ride up and back listening to music, reading tributes to Karen on Facebook, laughing and crying. I believe Karen led us to a dirt road on a traffic avoidance maneuver in New Jersey. Who knew there were any dirt roads in that part of New Jersey?? The first month was bad, but there were the distractions of getting Matt and Susie ready to go back to school, and planning Karen’s service and celebration. We waited a few weeks, partly because we wanted to give people time to make plans, and partly because it was the first time we could get an outdoor space to have the party Karen wanted. We had a beautiful memorial service. There were so many people there; immediate and extended family, friends from near and far, people I’ve never met before. I loved hearing people share their memories of Karen, and how she was part of their lives. The party on Sunday was just what she would have wanted, with so many people, and so many activities that she enjoyed, being enjoyed by her friends and family. The taco bar was very popular, and hopefully a whole new group of people will make castle cakes, now that they know how. We are so grateful to her Camp Sunrise family for the tie-dye experience!! We all have wonderful reminders of Karen that we can wear as often as we want to. I have put the scrapbook pages people made into an actual scrapbook, and I plan to add the memory cards that people wrote, along with printed copies of the Facebook tributes and emails. All of that makes me smile through my tears. I wear some of her camp bracelets, and the other bracelets that she always wore, and her favorite necklace. As I fiddle with the beads on the bracelets, and the cat plays with the necklace, I think of Karen. The distractions disappeared when school started. I’m home during the day, and when I stay busy, things are usually reasonable. After all, Karen wasn’t always here all day, so for a while, in some part of my mind, I could pretend she was at school, or away somewhere. But then, reality would hit me, and it would come back. I would look at the plants people sent us (some of which I haven’t killed yet) and the pictures of her, and the velvet bag on the mantle, and I would just cry. That pretending method doesn’t work so much anymore, unfortunately. I drive to the grocery store, and I hear something on the radio, or see something that I would have commented on to her, and I can’t. Or I do, and she doesn’t answer. So I still cry. My sister told me I’m probably scaring people in the store, but I don’t think so. I don’t really think most people are looking that closely. Fortunately, I have great friends who call to chat (and understand when I don’t feel like answering!) or make me go out to lunch, or on hikes, or plan things to distract me at my birthday. So I don’t cry all the time – there’s laughter and smiles, too, which is a good thing. We have gotten so many cards and notes and gifts! Susie’s comment on all of that is that Karen always did get the most mail (that wasn’t bills, etc.) The outpouring of support and love has been amazing, and has reminded me over and over again how inspiring Karen was to so many people. To us, she was just Karen, doing what Karen did. Only now, seeing how many lives she touched, do I really see how incredible “just Karen” really was. I have been reminded that there is a time for all of us to die, and it was apparently her time, but there was so much more good she could have done. I just don’t understand why it had to be her time already, and so many awful people are still here. I love to see people post things on Karen’s timeline on Facebook, and send her text messages and pictures in Snapchat. (sorry if it creeps you out that I look at them… but I won’t respond from her account!) I’ve mentioned to some people that I’m so afraid that she’ll be forgotten, and it makes me happy to see people thinking of her as they eat tacos on National Taco Day, or running in her honor to raise money for a cause she would have supported. Karen had an app on her phone called Timehop. Eventually, I checked it out, and now I look at it every day. It’s like a flashback into her social media that day, with pictures and tweets and facebook posts through the years. I love it! Sometimes it makes me smile, and sometimes I cry. Sometimes I send pictures of the posts to the people in them, or to others who I think would enjoy them. I’m sure some of those people have cried and laughed along with me. We made it through the first Thanksgiving without Karen, David, and Dean. Even though David wasn’t at the family dinner last year, we could still visit him and talk to him (and get an answer!) All three of them LOVED family gatherings, and I sit here crying right now, hoping that they spent the day together, eating too much, enjoying some good company, and sharing their love with others. Christmas is coming, and we’ll do all the usual things, and it won’t be the same. I see lots of tears in my future. Choosing a Christmas card was very difficult! I couldn’t handle getting a card that said Merry Christmas, or Happy anything. Not feeling that, somehow… Some people said I should just skip it. Some people said I should swear at the holidays (on the card.) I didn’t want to skip it, mostly because this is the last year I’ll have all three of the kids on my Christmas card, and I couldn’t not do it. (In the end, we went with Peace and Love.) If the card was that hard, how will it be to choose a tree without Karen? She never missed the tree selection – the year she was at NIH, she talked the doctor into letting her out for the day to get the tree, and Matt pushed her around the tree farm on the little cart, because she couldn’t walk that far. I’m sure I’ll cry my way through the tree farm, as Matt and Susie find the fattest tree there is.
We have gotten so much support from so many people for so many years. All of those meals people brought, all of those rides to places for the kids, all of those visits people made to the hospital (or wherever we were staying) and the emotional support over the years… our family is enormously thankful. I know it will continue as we continue down this road, and I know we are blessed with wonderful family and friends. It’s been a blur since my last post. The Inotuzamab didn’t get shipped until Thursday – apparently the request letter from the doctor has to be on hospital letterhead. Perhaps someone should have mentioned that was an issue. Despite the frustration, there was the benefit of being able to eat and sleep at home for a few more days. We also went to a neighbor’s house and picked cherries (Thank you, Ellen!). I didn’t pick very many, but it was entertaining to watch Susie on the ladder tossing them down to my dad. We also learned that a paper clip works well as a pitting tool – who knew? I’m still really disappointed that I had to cancel my summer road trip. Cancelling reservations sucked, but I have to give a special shout-out to KOA. Not only do they support camp, but when I said I needed to cancel because of medical reasons and can’t take my trip, they gave me a full refund. On Friday, I was admitted to the hospital to receive the Inotuzamab. Inotuzamab is a drug that targets the CD-22 protein expressed on leukemia. I received the first dose Friday night, which was quite a production. The medicine is very light sensitive, so all of the IV tubing had to be wrapped in aluminum foil. “Foil shielding” doesn’t come standard from the pharmacy, so the nurse had to make it, which was amusing. I had a 103 degree fever before noon the next day, but there was no sign of infection, so the doctors concluded this was most likely due to cytokine release – essentially toxins that are released as cancer cells die. The fever quickly subsided and I was able to go home a few days later. To top it off, when I asked permission to go to a graduation party, I was told my only restrictions were no skydiving or MMA. In addition, summer classes were starting, so I would be busy. My next treatment (7/7) was fairly uneventful, and accompanied by a great surprise. My cousin Annabelle and my friend Mandy both traveled to Maryland as an early birthday present. Jenn joined us and we went to Quiet Waters Park, and then to dinner at Mandy’s parents. We went downtown for ice cream, and walked to the harbor and talked about a little bit of everything. Having their company for a ‘normal’ evening was a great present. Unfortunately, my actual birthday (7/11) was not nearly as nice. Results from the bone marrow tests the previous Friday indicated that I still had measureable leukemia, and that it was no longer expressing CD-22. The leukemia had mutated again, and the Inotuzamab would no longer be effective. By the end of the week, I was back in the hospital for chemotherapy. I was reminded again that games are a good way to pass the time in the hospital. On the weekend, my dad and I played Uno – and the nurses joined us for some great games of Bananagrams. I was able to go home a few days later, receiving most of my treatment and check-ups via clinic visits. On the 26th, I didn’t feel well and developed a fever. Sepsis is one of the greatest risks of chemotherapy treatment. Similar to my previous sepsis event, I was taken to the local emergency room, and subsequently to the Johns Hopkins PICU. Don’t get me started about what happens when they spell your name wrong in admissions! I was able to leave the PICU a few days later, but I can’t even begin to explain how disappointed I was, knowing that I would be missing the beginning of Camp Sunrise. I was heavily involved in much of the planning, and was really looking forward to serving as co-LIT director. Everybody at Hopkins knows how important Camp is to me, and they’ve always tried hard to let me go (since I seem to be in the hospital in late July a LOT!) Even though I was still really weak from the septic shock, and needed lots of platelet transfusions, the doctors agreed to release me from the hospital and let me go to camp, since there’s full-time medical staff. Camp Sunrise was harder than I expected. I was on pain medication because my mucositis (think cold sores over your entire mouth, throat, and esophagus), extremely weak from the septic shock, and my blood counts were low from the chemo. I stayed in my room and slept a lot of the time. Matt visited me often, and I was really thankful for his company. I hated not being able to help as much as I normally do. Despite all of those things, I was still glad to be there with so many of my camp friends. With their help, I made it to the Camp Sunrise dance – which is always the highlight. By Saturday, I was exhausted, the pain from the mucositis was becoming unbearable and I knew I was dehydrated. I was actually anxious to get to the hospital. Once there, I accepted narcotic medications for the first time. I didn’t like them – or the alternative. I was in a continuous fog over the weekend. I spent an hour trying to eat a single piece of watermelon cut into Skittles-size pieces, but it was too painful to eat. I coughed up strings of mucous. On Tuesday night, I got another fever. My heart rate was high, and I couldn’t keep my oxygen levels up, even with the tube in my nose, so I went back to the PICU. In February, I had jotted down some notes on my iPad regarding what I wanted if I died. I told my mom where they were before they took me down to the PICU. I don’t remember much about the next 36 hours. I was still getting a lot of pain medication and I slept most of the time. On Wednesday night, my condition worsened. Even though I was on a ventilator, it was hard to breathe. Mom rubbed my arm. She told me how strong I was, and how much she (and everybody else) loved me. She also told me that it was okay to let go if it was time. Dad and Matt were there too. They didn’t bring Susie in, which was fine with me. I didn’t want her to see me with that tube, unconscious. They sang to me. They sang “The Farmer in the Dell” – my favorite bedtime song when I was young. They sang “You Are My Sunshine,” which was Matt’s bedtime song. They sang “Lean on Me,” which is always the final song at Camp Sunrise. As they sang, I heard God’s voice in my other ear – singing those same words “Lean on Me.” With those words came peace. That’s when I knew. There was no longer any reason to fear death. I conquered my last fear. Let the story I've written Be something worth leaving behind When I'm gone Tell them I laughed more than I shed tears When I'm gone Tell them I stared down all my fears from When I’m Gone, by Craig Morgan Postscript: Obviously, these aren’t Karen’s words. The note on her iPad said she hoped we could maintain and continue her blog in some way. This is an attempt to include the final steps of her journey through her eyes. Her actual journey may have been much different, and she probably would have done a much better job of telling her story. To the other patients and families who follow this blog: Don’t lose faith. Everyone’s journey is different, but we believe there are lessons we can all learn from the courage, optimism, and spirit that Karen carried through her journey. We don’t know exactly what our next steps will be for this blog … part of it will be our story as we cope with our loss. We’re also interested in adding others’ voices to this blog. Please contact us with suggestions and input. Karen Shollenberger: 7/11/1994 – 8/10/2017
http://www.haightfuneralhome.com/obituaries/Karen-Shollenberger/#!/Obituary https://thetriangle.org/news/karen-shollenberger-1994-2017/ When I wrote my last post on Thursday, I was prepared for Friday admission to Hopkins but didn’t really believe it was going to happen. Sure enough, I did not get admitted on Friday, though I definitely did not expect that I’d be writing another update from home almost a week later. On Friday, I got a call from my doctor that the drug I need (Inotuzamab) had not been shipped yet, and the company only ships Monday through Thursday. He set up labs for Saturday and we negotiated my overnight fluids so my port could be de-accessed in time for the extreme heat on Sunday. I had been planning a hospital castle cake and an alternate graduation with my friends in Maryland, but as soon as I realized I wouldn’t be admitted until at least Monday, I started making bigger plans. My graduation ceremony was at noon on Monday, so I knew that I could get back in time for a direct admission to the inpatient side if I needed to. After all of these delays, I was having trouble picturing anyone telling me that waiting a few more hours on Monday would make a big difference if I arrived on the floor at 6pm instead of noon. As one of my friends pointed out, graduation is once in a lifetime, cancer is apparently six. I know some of my team is extremely conservative, so I went with the ask for forgiveness instead of permission method and headed to Philadelphia with my friends on Sunday, car loaded with castle cake supplies. I invited a few of my Drexel friends over for castle cake, a new experience for most of them. For those of you who don’t know, castle cakes are a family birthday tradition, but I’ve expanded them for other occasions. I bake cakes in a variety of shapes and sizes and we put them together with icing and candy into a castle or whatever else. I have some extremely creative friends – instead of making a castle, we made a dragon! He was somewhat based on Drexel’s mascot, Mario, and was wearing his own graduation cap! It was really nice to have that extra time in Philly to see some of my closest friends again before I’m home for a few months. I also love when my friends from different places all get along! One of my doctors called during the cake making to tell me that he didn’t realize my graduation was on Monday and I should go and enjoy it and come to Hopkins on Tuesday instead of rushing back Monday. It was really nice to be able to enjoy the rest of my time in Philly without a strong time constraint! After the cake, I went out to dinner in Old City with my friends from home. We also went to Spruce Street Harbor Park, which was surprisingly packed for late Sunday night. It finally cooled down to a comfortable temperature and we hung out almost until it closed before heading back to my apartment for a big sleepover. On Monday morning, we finished packing up my stuff so I could move home for the summer. My friends and parents loaded the cars while I ate and got ready for graduation. I was supposed to be at the venue 90 minutes early, but that sounded unnecessary so I only went an hour early. That was plenty! All I had to do was pick up my name card and sit outside with my fellow graduates melting and chugging as much water as possible. Luckily, graduate students walked in and were seated first, so we didn’t need to stand in line in the sun as long as some people. When I graduated from high school, it was exciting, but it was never something I doubted I would do. During my freshman year, I felt the same way about college. Yes, it was more challenging than high school, but I knew I could work hard and get through it. As I adjusted to city life, I even joked (somewhat seriously though), that getting through the next five years without getting hit by a bike or a skateboard would be as big of an accomplishment as earning my degree. After I first relapsed after freshman year, and four more times since then, there were definitely times that graduation felt like something that might never happen. Although I have a few classes left to finish before I officially get my degree in December (hopefully!), it was unbelievably exciting to walk across the stage, summa cum laude, for my bachelor’s and master’s degrees! I’m so grateful for the friends, family, professors, and advisors who have supported me over the years. And of course, a special shoutout to my treatment teams for keeping me alive and Pfizer for taking so long to get me this drug that I could attend graduation! My dress and gown were damp with sweat and stuck to me, and I was too hot to focus on some of the graduation speakers, but the ones I heard were good. I had brought snacks and lots of water so I didn’t pass out or anything. Graduation was at the Mann Center, which is a covered pavilion similar to Merriweather, but without ceiling fans. There wasn’t much airflow up in the front where we were sitting, but at least we were in the shade. There was a nice reception after the ceremony, but I was too hot to eat much. I just kept drinking water. I keep track of my fluid intake, and by the end of the day I was at 4.5 liters! After graduation, we drove home and had a small cookout by the pool. It was a much-needed cool and relaxing way to end the day. I wish I had gotten to see some of my professors, because I’m sure they were quite confused when I missed the last week of their classes yet managed to make it to graduation. My Tuesday morning appointment was scheduled for 8:30am, but I was exhausted from the weekend and slept until 8:30 instead. I did my best to unpack and pack for the hospital quickly. It turns out, the packing was unnecessary because, once again, the Inotuzamab had not been shipped yet. My appointment was fairly quick, and I spent most of my waiting time hanging out with my favorite therapy dog, Grendel. My labs were stable, which continues to impress me considering we’ve been letting this leukemia sit here untreated for weeks now. In fact, the number of blasts in my blood went down from 15% to 4% which is completely puzzling. I guess that could be margin of error in the lab, but both my Saturday labs and Tuesday labs showed much lower numbers than the labs from last week. I have no idea if that means Matt’s immune system is kicking in and attacking the bad cells or if it’s a lab issue, but I’m not complaining! I’m really glad the leukemia isn’t taking over so rapidly that we need to start chemo while we wait for Inotuzamab.
Some combination of the heat, my low red count, the leukemia, my boredom after all the excitement of graduation, and one of my medications is making me more tired than usual, but otherwise, I’m still feeling pretty good. It’s difficult to make many plans when I’m really waiting day to day for a phone call or email saying whether or not I need to go to clinic. Despite multiple attempts to reach them, my doctor didn’t hear anything from Pfizer today, so we don’t think the Inotuzamab shipped yet. It usually ships overnight, so it will arrive quickly whenever it finally ships. In the meantime, here we sit! I go to clinic every other day for labs to make sure my white count isn’t rising out of control and my other counts are stable. So far, so good, but I’m anxious to get started. The last few weeks have been a lot of hurry up and wait, which isn’t fun when you know you have bad cells growing in your body. Until the drug arrives at Hopkins, each day is a firm possibility of a definite maybe admission unless my labs change drastically and we need to do something else in the meantime. This is incredibly frustrating for everyone. The other day, my doctor made a comment about being frustrated, and my mom and I laughed out loud. Yes, we’re very frustrated! Understatement of the day. However, I can imagine that it’s also quite frustrating to not be able to treat your patient due to things out of your control. We are ready to drive up to NY and get it ourselves! We were halfway there this weekend… Usually I end my posts with what’s coming up, but I really have no clue! I think tomorrow will just be a clinic visit, but maybe the Inotuzamab will magically appear and I’ll get admitted. It only ships Monday through Thursday, so if it doesn’t ship tomorrow, maybe I’m free until next week. We’ll see! Thank you so much for all of your prayers and messages over the last week. I try my best to respond to everyone, but some messages slip through the cracks and I apologize! I really do appreciate every one! Most people who have been following my blog for a while know that two posts this close together are not usually a good sign. The good news is that we finally know what was causing all of my random fevers. The bad news is that it was another relapse, not a virus. I considered making this a short post, but that could not fully capture the uncertainty and rapidly changing plan I’ve been dealing with for the last week and I think that’s important. It can be hard to explain to people why it’s difficult to make plans a few days in advance, but it seems like my plan changes every few hours. I started texting a few of my friends every time the plan changes and I can tell they have a much better idea of my frustration level now. I posted my last update two Sundays ago. Although my counts had been a little low when I was last at CHOP, I hadn’t heard anything from Hopkins so I figured they weren’t too concerned. On Tuesday, I was trying to fix the SunSibs schedule before class when I got an email from my doctor. He said that if my counts were still low on Friday, they wanted to do a bone marrow aspirate, did that sound okay to me? I quickly responded and said absolutely not – I can’t show up to camp on Friday afternoon sedated. I suggested the following Wednesday instead if we needed a procedure. On Thursday, my parents came up to Drexel for the College of Arts and Sciences Honors Day. Some of my professors mentioned I was getting an award, but I had no idea what for. It turns out, I got a small scholarship (which my mom had seen on my bill and thought it was a mistake so she reported it) and I had the highest GPA of any senior in my department! I know a lot of you are wondering how I managed that with everything going on, but in some ways, I think my medical issues helped my GPA. Most people have life as a distraction from school, but for a lot of my college career, school was a distraction from life. It was something normal and predictable to focus on when everything else was crazy. Either way, I’m really proud of my ability to keep up and thankful for all the help from my advisors and professors. I went to Hopkins on Friday morning to check labs before camp and decide if we needed the bone marrow aspirate. My labs were overall stable from what they had been on CHOP, but my platelets were dropping so they scheduled the procedure for Wednesday after camp. As usual, I had an amazing time at SunSibs! It was a little rainy but definitely could’ve been worse. Matt came for the second time, so the three of us were all there together again. Our parents had the weekend to themselves and they opened the pool, because that’s what everyone does when their extra hands leave for the weekend. I love Camp Sunrise and what it does for the patients, but I think SunSibs is so important and too often overlooked. It’s so nice for these kids to have something special when their lives have been so focused on their sibling’s illness for so long. I see all the time how much my being sick affects my siblings, and I know it would be even worse if both of our parents worked or in a single-parent household. Anyway, it was really nice to have a fun, rewarding weekend before my week of bad news. I’m one of the Leadership in Training directors for Camp Sunrise this year, and we had our first training on Tuesday night. I was a bit nervous for this new role and leaving my comfort zone working on the daily newsletter, but we have a great group this year! On Wednesday morning, I headed back to clinic for my bone marrow aspirate. I was feeling pretty good about the test because I hadn’t been getting as many fevers and I realized that they started not long after a weekend camping so it was possibly a tick-borne illness. However, my attending physician came in, which made me uneasy because we generally only see him when there’s a problem. He told us that he looked at my blood from Friday and didn’t like what he saw. He thought it looked like there were leukemic blasts in my blood, even though the lab hadn’t said so. We were holding on to the idea that he might be wrong until 20 minutes later when that day’s lab results came back and showed that there were definitely blasts in my blood. At that point, the bone marrow aspirate wasn’t to determine whether or not there was disease, but to figure out how much and what it looked like (if it expresses certain proteins, there are more targeted treatment options). Getting this news is always devastating, but it’s especially devastating two weeks before I’m supposed to walk for graduation and leave for the road trip of a lifetime with my best friend. It’s especially devastating when I knew even before we discussed them that my options are increasingly limited. Most people don’t make it through standard treatment, two bone marrow transplants, and two experimental therapies with an otherwise healthy body that can still handle more treatment. My situation is so unique that the data is only so useful in choosing a path forward. I also knew that, if the leukemia has spilled out from the bone marrow into the blood, there’s already a lot of it. We hadn’t caught it as early as my last few relapses because we’ve spent the last month thinking it was a virus. My doctor called the next day and confirmed that my bone marrow has a lot of disease (about 75%) so we should start treatment as soon as possible, they were thinking I should come in the next day. I froze – I had a banquet the next night and three final papers/presentations due the following Monday through Wednesday. I said I needed a little time to process and make sure I could sort out my school stuff. We settled on admission Saturday so that I could go to the banquet first, and my professors were understanding as I expected. Before heading to Philadelphia on Friday, I went to clinic for labs to make sure everything was stable. They threw in some other tests like an ECHO and I signed consents for multiple treatment options. The ideal option is a drug called Inotuzamab which targets a protein expressed on leukemia. They’re hoping that can reduce my disease while I wait for the RESOLVE trail I was already planning to do this summer. Inotuzamab is currently in phase three trials, soon to be FDA approved, but currently can only be acquired through a trial or directly from the company for “compassionate use.” During this clinic appointment, I found out that I would be getting admitted on Saturday so that I could get IV fluids all weekend and I said I was absolutely not going to be inpatient just for fluids. I requested a drinking goal and IV fluids at home if necessary. By the time I got home from my appointment, I was driving to Philly at rush hour but I was determined to go to this banquet because it was a dinner cruise I’d been looking forward to for weeks and one last normal thing before I started all this again. After brunch on Saturday, I drove home so I could have my port accessed for IV fluids overnight. When people have a lot of disease like I do, it can start breaking down and this process can be tough on the kidneys. However, I’m drinking three liters a day, getting a liter IV, and taking medication to help the kidneys so my numbers are actually abnormally low. On Monday morning, I realized I had no idea how long of a hospital stay I should be packing for. I emailed my doctor and he told me to prepare for two weeks, maybe longer. I got to clinic a few hours later and my nurse mentioned giving me fluids and sending me home. My doctors decided they really wanted to do the Inotuzamab instead of some of the more chemo-heavy options, and they didn’t have the drug yet. The rest of my labs were stable, so I went home with plans to return the next day (Tuesday) for a spinal tap and Wednesday for admission. I’ve never had any disease in my spinal fluid, but they needed to double check because CNS disease would disqualify me from the Inotuzamab. Spinal taps aren’t too bad, but the one time I didn’t have Versed, the procedure did not go well. I had a lower dose of Versed than for my bone marrow test, but it knocked me out. In addition to taking some spinal fluid for testing, they put some chemo in my spinal fluid just to make sure no disease pops up there. It wasn’t the usual methotrexate because there’s a shortage, and this other drug made me feel awful. I slept for most of the rest of the day. I was asleep for this conversation, but when we left Hopkins on Tuesday the plan was basically that we’d get a call or email when there was a plan. When I woke up yesterday (Wednesday) to no sign of a plan or getting admitted that day after all, I was extremely frustrated. I understand that my doctors are doing what they can and that they don’t have control over when the drug arrives, but it would’ve been nice to hear a more certain “no, you don’t need to come in today.” I had two big things happening at school that I easily could have driven up for if I hadn’t been sitting at home waiting for an appointment. Missing things for treatment is absolutely understandable and I’ve learned to accept that over the last four years. Missing things so I can sit at home waiting for a phone call about the plan? Absolutely infuriating. The drug doesn’t magically transport itself, so I know there’s a certain amount of lead time. If you don’t know when you’re going to get it, just tell me that. I could’ve gotten to Hopkins from Philly in only about an hour longer than it would take to get there from home. My day got better thought because I got to see some friends and go to my first Orioles game! It was a beautiful night and a crazy game, so that was a great experience! And of course it was nice to have a completely hospital-free day. However, since I wasn’t getting a liter of IV fluids, I worked hard to drink enough to make up for it – I was only half a cup shy of 4 liters! I got an email last night saying that I officially qualified for Inotuzamab and they were hoping to get it by today. I would probably need to go to clinic and would be admitted from there, but my doctor would confirm with me later. I figured the baseball game was a great last night before the hospital and I was ready to get started. When I woke up this morning without any confirmation or scheduled appointments (we can see them in an app), I was very confused. I sent another email and found out the drug wouldn’t be arriving today, so I needed to go to clinic but as long as my counts were still stable, I’d get IV fluids and go home. Sure enough, that’s what I did and I’m typing this from home. Even with an insane number of appointments, there have been plenty of fun things in the last two weeks and it’s really hard for me to believe my bone marrow is so full of leukemia. I’m finally getting a little more tired than usual, but I’ve gone for walks and felt fine. My appetite has been normal and I destroyed a huge burrito last weekend. I’ve been swimming, played board games, and worked on some of my final projects. After our banquet, I went out with some friends to a karaoke bar and didn’t go to sleep until about 2am. The title of this post is actually dedicated to the friends I was out with, who serenaded me with Survivor by Destiny’s Child. I’m not scheduled to finish my degrees until December, but I was planning to walk in the graduation ceremony this upcoming Monday. Three of my long-time best friends were coming from out of town for it, and I was really excited to introduce them to Philly and my friends at Drexel and build a celebratory castle cake. I have the most supportive friends ever so of course they will come wherever I am, even if that means we are making up our own graduation ceremony and building a castle cake in the hospital this weekend. The past week has been such a rollercoaster of emotions. I’m extremely frustrated, because back in March my doctors convinced me that I was at high risk of relapse and we needed to do something. Their original plan got shut down by adult oncology, which I still don’t understand, so we did nothing and I spent the last few months worrying and, surprise surprise, here I am again. I’m sad to be missing so many of the senior activities I worked so hard for, and even more devastated to cancel my cross-country road trip. I’m glad there are still options and that my team is trying to pick the best one, and I’m more thankful than ever for my super supportive friends, family and professors. Most of all, I’m just tired of this and ready to have more than a few months of normalcy at a time and I’m prepared to keep fighting to get there. As always, thanks for your thoughts, prayers, and entertainment suggestions! I’ll post again soon when I get a better idea of the plan. Yes, the current plan is admission tomorrow, but I’ve thought that five other times this week and I’m still home… |
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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