I’m back!! This is a very overdue update post since my last one was in 2017 and lots and lottts has happened in my life since then. So 5,6,7,8 …..
Let me catch you up (2017-2019)
In my last update, I talked about the lesion in my brain that we were watching with scans every 8 weeks. That same lesion is still in my brain but has remained stable with minimal growth, which is great news! Early August 2018 my brain MRI showed that there is a cyst in the cavity of my brain where my last two tumors were. While the doctors told me it was nothing to worry about and they were sure it was benign, I still felt uneasy about having another mass in my brain, and this will come back up later on in this post. Right after my scans my family, my friend Savannah and I went to Puerto Rico for vacation. I didn’t tell anyone how I felt about that cyst in my brain because the doctors told me not to worry about it. While nobody knew my concerns God sure did. God has sent angels to the earth to tell me to stay strong and have courage. I wrote about the specific angel God sent to Puerto Rico to remind me every thing will be okay. You can read the Facebook post about my encounter with the angel here. Shortly after that trip God sent another angel to me in a place you would never imagine – Walmart in Oxford Mississippi. I was walking out of one of the aisles and almost ran into this lady and I said “Oh my Gosh I’m so sorry” then I was trying to get out of her way, when she looks at me in the eyes (and I’m thinking oh no she’s mad) then she firmly said “God just told me to tell you to be strong and have courage.” And I felt that, I could feel God speaking to me so I just hugged her and started to cry. Then my roommate comes out of a different aisle looking at me hugging some random person in Walmart 😂 Once the woman left she turned the corner and we never saw her.
One of a Kind
Since St. Jude is a research Hospital, they have been studying my 2 brain tumors since 2013-2015. This led the researchers at St. Jude and scientist across the world to discover 5 new types of brain cancer. I was originally diagnosed with Anaplastic ependymoma grade 3 brain cancer, that is also the cancer I was treated for. But one of the 5 cancers that researchers discovered is actually my cancer. It is so new when they discovered it in 2019 there was no name, treatment, or cure for the cancer. I was 1 out of 1 patient to have this cancer at St. Jude, let alone 1 out of the very few around the WORLD. Today I believe I am 1 out of 2 patients at St. Jude to have this specific cancer. They are able to diagnose patients with this cancer from the study of my brain tumors the past 8 years. They have established my specific cancer as HGNET-MN1 which means High-grade neuroepithelial tumor with MN1 alteration.
2020 New Year, new seizure?
Now on this post we have made it to 2020. Lots of unexpected things happened in everyone’s life in 2020. The chaos of my 2020 started on January 6th. Remember that cyst in my brain my doctors told me not to worry about? Don’t forget it. January 6th I was sitting in the living room with my mom watching Ellen on TV. Dua Lipa was on the show and her song “New Rules” was playing. My mom was trying to sing the song when it stopped playing and she was SO off on the lyrics so I start to correct her by saying the correct lyrics. “No mom, it goes, One: don’t pick up the phone you know he’s only calling when he’s drunk and alone.” At least that what I was trying to say. But when I spoke I couldn’t get those words out of my mouth, I was trying to speak and my brain started flipping words and made me speak gibberish. I had no clue what was going on, and my mom didn’t either as she thought I was trying to correct her on the lyrics when I couldn’t even say them myself. And then we both realized it was probably a focal seizure. I thought it was over so I went upstairs and texted Parker (my sweet boyfriend). In my mind, I texted him something about me thinking I just had a focal seizure. But that is not even near what I texted him. I don’t remember what the actual text was but it didn’t make any sense to the point where he was concerned that something was happening to me. Everything that happened after that is a blur to me. Parker came over, and I was on the couch crying because I was so confused and had no idea what was going on. My mom asked if I wanted gatorade and I had absolutely no idea what gatorade was. They brought me gatorade and I saw it, but still didn’t know what it was. Mom asked me what my dogs names were.. I had no clue. My mom called St. Jude and they told her to take me to Le Bonheur ER. At this point, it is getting late at night and they have me on fluids and did some scans on my brain. I do not remember any of this. They told my mom and Parker that they thought it was a mini stroke. Not only that, they said they saw a bright spot in my brain and that they sent the scans to St. Jude so my doctors can review them. Because my regular scans were on February 1st, my doctors at St. Jude wanted to wait to rescan until then. As you can imagine I’m thinking the bright spot the found in my brain had to be my cancer and that this would be my 2nd relapse. It killed me to have to wait so long to find out.
February 1, 2020 After having my brain MRI at St. Jude, my doctors showed me that the lesion in my brain remained stable and the white spot that the ER doctors at Le Bonheur were talking about was scar tissue around that cyst. That damn cyst. What the ER thought was a mini stroke was actually a seizure caused by the cyst growing and pushing on the scar tissue. Because I am on the highest dosage of Keppra XR (4,000 mg a day), my neurologist decided to add a new seizure medication, Lamotrigine. Besides a couple more seizure similar to the one on January 6, this medication has been working (knocking on wood, crossing my fingers, praying.)
Going into the new year 2021
Over winter break I had a few appointments at St. Jude with neurology. My neurologist is acknowledging the fact that I am getting older and that in the future I will want to get married, and knowing that I had my eggs retrieved before treatment in 2015, I want to have kids and a family someday. Considering I am on so many different medications, I am going to have to get off of the ones that are unsafe to take during pregnancy (again, distant future haha.) Getting off these medications will be a long process, so my Neurologist decided to slowly start the process now. This will be a tough process because I have been on the majority of these meds for almost 8 years now. Our first step is raising the dose of Lamotrigine (which is safe to take during pregnancy) and lowering the dose of Keppra, which I have been on for 8 years. This first step should be done in May and I will be completely off of Keppra and on a higher dose of Lamotrigine. THENNNN (stay with me) A different person who is not my primary doctor and does not have control over prescribing my medication wanted to take me off Erythromycin, which I have been taking since 2015 to repair my stomach and esophagus from being burned from radiation. This person decided with out talking about it to me to cut me off cold turkey and said I needed to start going to an adult GI. So I did and the GI doctor said that Erythromycin is not a medicine you can be taken off cold turkey, especially because I have been on it for 6 years. So I am now on a schedule of getting off Erythromycin too and if that is problematic then I will have to get a scope to see if my stomach is still damaged from radiation. So to sum it up, I am going up on one medicine and down on 2 different types of medicine. My schedule for this process is overwhelming and filling my pill box feels like a full time job and I should be paid for having to go through this much anxiety.🤣 So far my side effects from slowly getting of Erythromycin have been really bad stomach pain and nausea (and once I’m out of quarantine I will make an appointment with my GI).
When I say quarantine, yes I have Covid.
Unfortunately Parkers family got Covid and once he tested negative, he quarantined at my house and we both ended up getting it. My symptoms have been bouncing around but I am doing a lot better today. My spring semester classes started today and I am having to stay at home for it since I am still quarantined. Thank you for everyone who has been following my story and praying and supporting me through all of this. And if you’ve made it this far in this lengthy post, thank you for reading 🙂 I will try to do better about posting updates!
The reference to the title of this post is from Miranda Lambert’s song “Bluebird.” The real lyrics are “And if love keeps giving me lemons I’ll just mix ’em in my drink.” Except I made my own version of those lyrics to “And if life keeps giving me lemons I’ll just mix ’em in my drink.” (My love life is great I love Parker and God couldn’t have blessed me more when he put him in my life.) But from reading this post, and all the other posts on this blog, you know that life has thrown me quite a few lemons. And on that note, I’ll take a lemon drop martini – my favorite, honestly.