I’ve been home for a week now and it has been quite a roller coaster. It started out pretty calm – we picked some delicious strawberries, I’ve seen a few of my friends, and I’ve enjoyed being surrounded by so many trees. I didn’t know what to do with all of my free time so I edited some things for people and worked on the Camp Sunrise activity schedule. Starting Thursday, it got a little more exciting, but boring really was better. On Thursday, I went to NIH for my six-month bone marrow aspirate, spinal tap, and various other tests. I finally figured out why I didn’t have the deeper sequencing results yet – my bone marrow samples had never been sent! There was a special consent form, which for some reason hadn’t been brought up either of the first two times they said they were going to send the samples for testing. Anyway, the results aren’t particularly useful at this point. My Versed was pretty effective so I don’t remember much of the procedure, but apparently the spinal tap didn’t go very smoothly. They eventually got what they needed, but it took longer than usual and probably more pokes and digging around than necessary. I ended up with a spinal headache, which is a headache to end all headaches. I get migraines, so that’s saying something. My head hurt so much that it completely masked my sore hip from the bone marrow. I drank tons of water and stayed as flat as possible until Sunday. I was so bored and restless, and it was not how I was hoping to spend my break week. Luckily, one of my friends was home for a few days. When you’ve been friends since elementary school, it’s a little more acceptable to say “sure I’ll hang out and help you pack for your trip, if by help you mean I can lay flat on your bed and make sure you pack everything.” By Sunday, my doctor said I needed to go in for IV fluids and pain meds. Just as I was finally headache-free (and could feel my hip stiffness again, though it wasn’t bad by that point), my doctor came in with the results from my tests. It’s pretty incredible that my headache didn’t come right back. The blood results weren’t back yet, but the bone marrow showed 0.02% leukemia. I’m so thankful that we keep catching it early, but really? How many times do I need to hear I have leukemia, do my parents need to hear their kid has cancer, do my friends and family need to get this news? Five, apparently. There was so little to test that they couldn’t get a great idea of what these specific leukemia cells look like. The targeted T-cell CAR therapies I’ve been getting attack either CD19 or CD22 (common proteins on the surface of leukemia cells). It seems like nowsome of my cells express CD19, some express CD22, some express both, and some might not even express either, so as you can imagine, targeted therapy is not going to work for such a weird mix. There is a new study opening soon that targets both at the same time, but if some of the cells are hiding both, that’s not going to work either. Leukemia is tricky. When I started this trial, they hadn’t seen leukemia hide CD22, so that was really promising. Now, it seems like that is possible after all, and even if CD22 isn’t completely hidden, the density is drastically decreased. Basically, the leukemia may still express some CD22, but not as much as before, making it really difficult for CAR cells or other targeted therapies like inotuzamab to find it. There have been a lot of thoughts running through my head the past few days. Shout out to Jenn for the day of spontaneous adventures for a bit of a distraction yesterday. We walked around a lake, played with puppies, hiked to a waterfall, and sat in her hammock above a stream and talked with the calming sound of water beneath us. It was exactly what I needed (besides for the leukemia to go away and stay away…). My first thought on Sunday (other than no way, please let this be a joke) was that I should have listened to the team at Hopkins and done a transplant three months ago when they suggested it. However, my dad reminded me there was no way to know, and when my doctor from NIH called later that night to check on me, she said “you are not alone.” Those words mean so much to me for so many reasons. She meant that I was not alone in wanting to avoid a second transplant if possible, and that I have three teams of doctors supporting me in my fight. But her words made me stop for a minute because there’s more to them that she wouldn’t have even known about. This term, I edited a booklet for Cool Kids Campaign as one of my projects. Its title? You Are Not Alone. Patients and families contributed stories and advice for dealing with a new diagnosis and it will be sent to hospitals around the country for newly diagnosed families. Editing it was the most fun I’ve had for a school project in a while, and I learned more than I expected to. There were definitely some hospital survival tips in there that I was hoping to never need again, but now can put to good use. Anyway, this phrase wasn’t just about the booklet and my doctors. It was about you guys. Everyone who reads these updates, everyone who texts and visits, everyone who supports my parents and siblings, everyone who joined the bone marrow registry or donates blood, everyone who sends positive thoughts and prayers, everyone who wears their Karen’s Crusaders shirts. I love you all more than words can describe, and you are so motivating.
Besides the whole wanting to avoid a transplant thing, I’ve done a lot in the past few months that helps keep me confident in my choice. I have been going to physical therapy twice a week with an awesome therapist who pushed me and encouraged me to do my best and continue increasing my weights. My knees feel so much better, they can straighten, and I’m that much stronger going into the stress of a second transplant. I’ve made new friends, had an amazing weekend at Sibs, and had lots of other great experiences I would have otherwise missed. Words can’t describe the disappointment of no longer having my summer full of concerts and vacations (mixed in with classes of course), plus the 30th anniversary of Camp Sunrise, but I know I’m strong enough to beat this. When you’re the only person in the world who has this exact treatment history, the plan forward takes a little while longer to come together. When people are initially diagnosed, it’s a “go to the emergency room immediately” kind of thing, whereas now it’s more like “when can you come in to discuss things and have all these tests?” I certainly want to get things moving quickly, but I also have concert tickets for this weekend and I’m going, even if that’s the last fun and normal thing I do before I’m inpatient for a while. It’s a balance. Of course I want to be healthy, but I need a few more days to mentally prepare, not a line placement on Friday. I have appointments tomorrow and Thursday, then I’ll be in Philly from Friday until Monday to sort some stuff out and see my friends. I’ve been worrying about everything except those pesky leukemia cells. I’ve been trying to get all the information I need to decide whether or not to continue some of my classes this summer. I worried about Gamma Sig office hours and the schedule for camp with my activity now up in the air. I’ve thought about how much I’m going to miss Clyde. I’ve tried to cram as much time with friends in between my appointments as possible. I haven’t really faced the idea of spending my entire summer inpatient. I’ve thought about the stuff I’ll be missing, but I try not to think about all the time I’ll have in the hospital and away from home. Being away because I’m in my second home in Philly is fine, but I don’t think my head will totally accept reality until I’m sitting in the hospital. With each diagnosis come fewer and fewer remaining treatment options, and I don’t like to think about that. Running out of options is not an option. The next week and a half involve lots of appointments and repeating the tests I had last week to confirm the diagnosis and check my organ function. I’m hoping to avoid another spinal tap because I have had a headache of some sort since my last one but I will definitely have another bone marrow aspirate, ECHO, EKG, a kidney test, and lots of labs. And I thought a spinal headache was a bad way to spend break – if only I knew! They want to put a Hickman in, but I’m resisting that until we have more of a plan. Unlike a port, Hickmans come out of the skin, need to be flushed twice a day, I couldn’t swim with it, and showering is a huge pain. I am happy to get stuck in the arm for labs until I absolutely need the line. Many of you have probably noticed over the years that my post titles are frequently quotes or lyrics, and this post is no exception. There’s a song called When I’m Gone that came out in the fall, right around my last relapse. It wasn’t played a lot on the radio, but I looked it up the first time I heard it. It’s about living a life without regret and one that will live on when you’re gone. That probably makes it sound really depressing, but I never interpreted it that way. I always thought it was very realistic – he isn’t going to live forever, and he wants to make the most of all the time he is given. Anyway, I love the song and I think I generally do a good job living it, but there is one line that’s been bothering me for the last few months: “Tell them I stared down all my fears.” I avoided my fears for the last few months, but now with a second transplant and hopefully enough GvHD to get rid of the cancer for good, I can truly say I am facing my fears. These bad news updates don’t get easier to write and they don’t get easier to deal with. They just get more routine, in the sense that I know exactly who I need to email to sort out various issues. They can’t be any more fun to read than they are to write. Thanks for sticking with me through all of this. One thing I learned in my public health class is that when you have bad news, you have to give people actions to take. I can’t think of anything I need right now, so if you want to help, go donate blood and platelets, join the bone marrow registry, and hug your friends and family. Text me tomorrow morning during my four hour kidney function test. Philly friends, I’d love to see you this weekend and please keep in touch! Maryland friends, the next week is really busy but I’ll probably be in the state all summer now. Love you all and thank you so much for your continued love and support!
8 Comments
Natalie
6/14/2016 07:54:27 pm
Karen, I am stealing your own words and sending them right back: I love you all more than words can describe, and you are so motivating.
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kelsie
6/14/2016 08:48:09 pm
fight. you are loved. you are strong. we are standing beside you now and always.
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Donna Larkin
6/14/2016 09:13:23 pm
We are all in this fight with you - whatever you need - whatever your parents and siblings need- we are there - You have a whole team of Karen's crusaders behind you - You will beat this You are awesome and amazing - lot of love always
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Colleen
6/14/2016 10:24:37 pm
Karen, you are an amazing young woman. Your words are very telling and helpful for me. You will get through this and I will be there to help you and your family . Love you❤️
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Marilyn
6/14/2016 10:47:41 pm
Your Camp Sunrise family is always there and you know our motto..........
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Tina and Dan
6/15/2016 12:51:25 pm
Karen, as always, you and your fam are in our thoughts and prayers. Hugs.
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Irma
6/15/2016 11:24:33 pm
Karen,
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Grace Cortez
6/17/2016 10:03:02 pm
Thinking of you Karen 🙏🙏❤️❤️💕💕My heart and My daughter 's are with you.
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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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