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…
5 Comments
Katie Daugherty
6/8/2017 07:28:15 pm
Hey Karen!
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Kim Farnham
6/9/2017 06:13:36 am
Karen or should I say "smarty pants"... Ha!Ha! Congratulations on your well deserved award! Drexel is very luck to have such a special soul. All my positive vibes are going your way.. Many hugs, lots of love to you! Take a breath and keep moving we are right behind you sweetie..❤️
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Shawneen Kelley
6/9/2017 09:53:02 am
Hi Doll, I couldn't find words yesterday and so I only sent my love. I am amazed by your composure and your strength in the face of such challenging and unknown times. I don't know that I have ever seen someone embrace life as fiercely as you.
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Ginny Rozema
6/9/2017 05:30:30 pm
So sorry to hear about all your change in plans. I can tell you had your heart set on that road trip. Wishing you the best and praying that you will recover real soon! Congratulations on your graduation! Excellent accomplishment! Take care of yourself.
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Colleen Blough
6/11/2017 03:33:08 pm
Hi Karen!
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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
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