I’ve heard that a lot over the past few weeks. Everywhere I go. Every hospital waiting room. Every oncologist patient room. Every blood lab room. Every time I go anywhere and have to explain what’s going on…followed by everyone saying man, you’re too young to be here. And I reply with “yes..I am..or at least I thought I was..”
It’s been about 2 weeks since I first received the news. That my abnormal swollen tonsil that I had removed was in fact positive for B-Cell Non-Hodgkin Lymphoma. When the ENT Dr. called to tell me and told me he was referring me to an oncologist it didn’t really process. I quickly called my dad and told him..then my sister…then my mom..a few other people. Each of who responded in their appropriate ways. Calm assurance that I would be ok, hysterical cries, repetitive apologies. I felt almost bad for putting people in the awkward situation of not knowing what to say but at the same time I just wanted to feel not alone for that second. That was May 10, 2016. It’s been just over 2 weeks and I could have sworn it’s been more. Here are the events of the past 2 weeks:
May 12: (2 days after the initial call) I met with my first oncologist who confirmed that I have a Diffuse Large B-Cell Non-Hodgkins Lymphoma. He gave us the basic information that it was a fast growing aggressive blood cancer and wanted to order tests to get more info.
May 16: Arrive at the hospital at 6:45am for my bone marrow biopsy. (I was terrified after watching YouTube videos-note to anyone who ever has to get one, don’t watch!) The actual procedure involves lying on your stomach while they put a needle into the pack of your hip bone, first to draw some bone marrow fluid, and then using a special tool they scrape an actual piece of your bone off. Luckily I got sedated and was sleep for the entire thing! Highly recommended 🙂 I was just sore for a day or two.
May 17: Met with a fertility specialist about egg preservation. Because chemo drugs are toxic and kill healthy cells in your body, including eggs, it was important for me to save my eggs incase the chemo made me unable to have babies. Basically what they do is prepare your eggs to the state where they would be mature, and then remove them surgically and freeze them until you are healthy again. (Begin daily fertility injections. yay..)
May 18: Arrive at the hospital at 2:30pm for my PET scan. They inject you with radioactive fluid that has glucose in it because cancer cells like glucose and will light up on the scan. After waiting for an hour for the radioactive stuff to kick in, I laid in the machine for about 15 mins and got the scan done. Piece of cake 🙂
May 19: Meet again with my oncologist to see what results he got from the scans. News: the bone marrow biopsy and the PET scan came back clean. We thought this was maybe good news, meaning that the cancer was gone and I just wouldn’t have to do anything else since the tonsil had already been removed.
*However* the type of cancer I have is aggressive and fast spreading. So even though at the second of the scans nothing showed up, it doesn’t mean that I’m clear. My particular form of B-Cell Non-Hodgkins Lymphoma is especially aggressive because it is a “double expresser”, meaning that a couple certain genes are present that make it faster growing and harder to treat. (Feel free to look it up cause it confuses me too lol) There is a large chance of it being in my body still and spreading other places. So even though my cancer was only in the tonsils and technically considered a stage 1, they have to treat it super aggressively up front so there is less of a chance of me relapsing.
May 23: We got a second opinion from an Oncologist at Emory. He basically confirmed that my type of cancer is a “double expresser” and is aggressive. The other oncologist wasn’t positive on which chemo to use to treat me, but this doctor confirmed that he would treat me with R-EPOCH chemo. This regimine is getting hospitalized for 5 days at a time and getting 24 hr chemo infusions. Then going home for 2 weeks. Then returning to the hospital another 5 days. I would do this for 3 or 4 rounds. So about 9 weeks. Followed with radiation to the neck where my original cancer cells started in my tonsils.
May 24 (yeaterday): I got a lumbar puncture to test for cancer cells in the central nervous system. I was nervous although it wasn’t horrible. The worst part was the nurse not getting the IV in my arm the first time cause I had blood drawn earlier and it wouldn’t go in right and I cried for like 10 mins. After that she was able to get in in fine and no more killing me 🙂 I was taken back to an x-Ray machine and laid on my stomach while the doctor found the best vertebrae to stick the needle between. Then she gave me a numbing shot in my back first, followed by a long skinny needle into the spinal cavity until the fluid started dripping and was collected. It was actually painless which was a nice surprise 😁
…..SO right now we are waiting to go to Cancer Treatment Centers of America in Newnan, GA on Friday to see what we think of it and get a third opinion. After we decide where I am getting treatment, I will have surgery to get my port put in my chest and then begin chemo.
I just wanted to track my journey kicking cancers butt and all are welcome to follow along and leave me comments or questions. It’s going to be hard and exhausting in every way but I believe that God has more to my story and that I will get through this and have many many healthy years ahead! ❤️