A year ago this month I received my cancer-hunting CART cells and what a difference that year has made! Last September, my blood was full of leukemia cells and I had a port in my chest. I couldn’t walk up a flight of stairs without support. I couldn’t straighten my knees. I was more than ten pounds below a healthy weight.
Most of these things are no longer issues. I’m back to a healthy weight, port-free, my legs are straight and stairs are no problem. Even hiking in Colorado last month went well, especially once I was used to the change in altitude. However, after almost a year of being cancer-free, I got the absolutely devastating news that I once again have leukemia in my bone marrow. It’s a tiny percentage, and it hasn’t made it out to my blood yet but like they told me last June when I relapsed, it’s like a baby – it’ll just keep growing. I started to write this post before my appointment so that I could post it faster when I got the clear results I was expecting, but then I stopped myself. What if I jinx myself? When I got the news, I immediately thought “I shouldn’t have started that blog update,” as if typing a paragraph really affected my bone marrow. I wondered what negative things I’ve thought, said, or done that karma might be getting me for. Of course that’s a bit ridiculous, but it doesn’t seem like it when you’re in shock. So what really happened? My CART cells were engineered to target the CD19 antigen, which was expressed on my leukemia cells. In some patients, the CART cells stop multiplying and eventually die off, but that was not the case for me. They’re still alive and well. Unfortunately, my leukemia was tricky and stopped expressing the CD19 antigen so the CART cells can’t find it. I am the first patient on the study to relapse more than 9 months out from treatment, so even though I knew it was still a possibility I wasn’t expecting it at all. Moving forward, there’s another CART study that targets the CD22 antigen, which is also expressed on my leukemia cells. There are also a few other options, at least one of which also involves targeting the CD22 antigen. My sister has generously offered her bone marrow again, though if I were to get another transplant I don’t think she would be my donor because she was too good of a match last time. We aren’t sure what the path is yet, but I will keep you updated. As far as Drexel is concerned, I’ll still be going back fall term. I’ve been so excited to go back and finally have a healthy year – I don’t think the reality has set in yet. Classes start Monday and no medical decisions can be made that fast. Realistically, it’ll probably be almost a month until any real decisions are finalized and I can’t sit around at home for that long. I’ll lose my mind if I don’t stay busy, and many of my treatment options are at CHOP anyway. I may not take all the classes I had planned, but I’ll see how it goes. I still feel great and I’ll be staying as busy as possible to keep my mind off how much this absolutely, positively sucks. I’m shocked, I’m sad, I’m angry (and I already took my Dammit Doll to school – ugh!). Why me? Why now? How much can my body take? I don’t have any answers, but I know that I can beat this. There is no other option.
24 Comments
Natalie
9/18/2015 12:45:28 am
Karen, I am stunned and do not even know what to say except that I am praying and sending love and healing to you. Aunt Nat (hope that brings you goodness, as that is what all my nieces call me.)
Reply
Karen Shollenberger
9/19/2015 12:09:42 pm
Thank you so much! ❤️
Reply
Donna Tremblay
9/18/2015 08:39:08 am
Karen,
Reply
Karen Shollenberger
9/19/2015 12:11:04 pm
Thank you!! I really appreciate the support!
Reply
Rebecca
9/18/2015 11:14:19 am
Karen,
Reply
Karen Shollenberger
9/19/2015 12:10:29 pm
Thank you so much! We really appreciate all you've done for our family during this crazy journey!
Reply
Allie
9/18/2015 12:10:48 pm
Your positivity and outlook on life amazes and inspires me with every single post. Keep on kickin cancer's ass!!
Reply
Karen Shollenberger
9/19/2015 12:08:36 pm
Thanks Allie! I'm doing my best! :)
Reply
Nianque
9/18/2015 04:21:40 pm
Wow Karen! Things have changed so much with treatment since my diagnosis back in 1990! Amazing attitude and strength you have, keep it up!
Reply
Karen Shollenberger
9/19/2015 12:11:39 pm
Thanks Nianque! It's crazy how much has changed even since my first treatment in 2004. I really appreciate all the thoughts and prayers and I'll do my best to keep my blog updated :)
Reply
Aunt Steph
9/18/2015 05:26:01 pm
I too am in shock. I found it hard to text your mom with all the tears streaming down my face - same with typing right now, but YOU are a strong and determined YOUNG LADY who will beat this AGAIN! I
Reply
Karen Shollenberger
9/19/2015 12:12:25 pm
Thanks for always being there!! ❤️
Reply
Kathy & Dennis Burkhart
9/18/2015 08:17:58 pm
You are absolutely right, Karen...this sucks! We, too, are shocked, sad, angry... Know that we are thinking of you and sending you positive thoughts. You are an extraordinary person who has overcome so much. Stay strong, and for now, enjoy fall term at Drexel.
Reply
Karen Shollenberger
9/19/2015 12:14:28 pm
Thank you so much! Hope to see you in January! :)
Reply
Patrick
9/19/2015 02:38:51 am
i cannot even imagine the journey you have had. Your positivity and resilance are truly inspiring. Keep pushing through and I know God has an amazing plan for you. It has been eye-opening to what real struggle is and I will keep you in my prayers. Thank you for sharing your story and may God Bless you.
Reply
Karen Shollenberger
9/19/2015 12:15:09 pm
Thank you so much! I really appreciate you taking the time to comment.
Reply
Ella-Mae
9/19/2015 07:16:44 am
Karen, first there are no words I can offer to ease the anxiety and sting of this but I adore you. You're right, it sucks and it's not fair. And for this to happen to one of the most amazing young women I've ever met really makes me angry. You should be out being stupid like other college kids but you have to make grown up decisions while fighting for your life and having hope. I am here, I love you and if there is anything I can do, let me know. I am forever your first nurse!
Reply
Karen Shollenberger
9/19/2015 12:15:54 pm
Thanks Ella-Mae! I love you and you'll always be my first nurse and the center of the universe :) let me know where your new job is and I'll try to come visit!!
Reply
Irma chazotte
9/19/2015 10:29:01 pm
I am still trying to process this and find it hard to believe. You are such a fighter and I am confident you will prevail. Please know that I am thinking of you and you are in my thoughts and prayers. Love to you and your family.
Reply
Karen Shollenberger
10/6/2015 04:04:40 pm
Thanks Aunt Irma! <3
Reply
Michelle
9/20/2015 01:29:19 pm
Words absolutely fail me. My love, thoughts, and prayers are with you and your family as always. Enjoy school and your friends, and know you are being thought of often. Love, Michelle
Reply
Karen Shollenberger
10/6/2015 04:05:50 pm
Thank you so much! We all appreciate it! School is going well :)
Reply
Amy mitchell
9/20/2015 09:09:56 pm
I was shocked & saddened to hear this news. Our prayers & support are always with you, you are one of the strongest people I know, & if anyone can beat this, it is you. Love & hugs!!!
Reply
Karen Shollenberger
10/6/2015 04:06:43 pm
Thank you!! Love you guys!
Reply
Leave a Reply. |
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
Categories |