Since my last post, a lot of beautiful, miraculous blessings happened. That post is for another time however.
So why is my post titled Hair when the only hair I have is a few strands barley hanging on? Buckle up!!
If you have read one of my previous posts from 2015, IT’S BRITNEY B!TCH, You know I lost my hair due to my 33 rounds of full brain and full spine radiation treatment.
side note… It is crazy how I feel reading the posts I made during the darkest time of my life and how it led me to where I am now, all thanks to the work of God.
About seven months post- treatment in 2015/2016, my hair started to grow back. It grew back thicker than it ever was before. I felt very hopeful that I would get to grow it out and get my long hair back. Unfortunately, it did the opposite. My hair started thinning three years later during my freshman year of college. Although it was thinning, I didn’t notice any hair fall out until my senior year of college in 2019 and has slowly been falling out since then.
I have tried what feels like almost every hair growth supplement, oils, shampoo and conditioners, the weird shit people told me to do (lol) and some very pricy products. This has been a journey of trial and error, resulting mostly in error.
In 2021, I went to the dermatologist about my hair loss. Because of my 66 rounds of radiation and specifically the spine radiation, I was warned that it is possible I could get Thyroid cancer. The dermatologist ordered blood work to check my thyroid levels. Thank the Lord my thyroid levels were fine, but the blood work showed my Vitamin D levels were low and that I am anemic. If you are unfamiliar with anemia, it is a condition in which the blood doesn’t have enough healthy red blood cell that leads to reduced oxygen flow to the body’s organs. (yes, I got this definition from google lol.) Both the vitamin D and Anemia could be factors in my hair loss, but the dermatologist narrowed it down to Alopecia. I just now went to snag a definition for alopecia on google and it straight up says “Alopecia is the medical term for bald.” So there’s that.. thanks for keeping it short and straight to the point, Google. My dermatologist then suggested that I try PRP (Platelet-rich plasma injections.) This was a very painful procedure that I did every 3 weeks for almost 2 years. This was very painful but worth it. My family and I, along with everyone else, got so excited when we saw baby hairs that started growing in. The new hair grew up to about half an inch before it started falling out. I decided, why put myself through pain just to be disappointed? So I stopped doing PRP.
I gave up on trying and on being embarrassed about it and ashamed because first of all, I am ALIVE! And second, I have so many people that love and support me no matter what I look like. However, just because I gave up and decided to roll with what I have does not change the sadness I feel when chunks are falling out or when I see what my head looks like in pictures. While my lack of hair did provide funny, self-depreciating jokes and since my hair to head ratio is beyond uneven (More head than hair obviously), I have decided to pull the trigger and shave my head.
This Valentine’s Day will be my 10 YEAR Cancerversary. It’s so crazy how slow, yet fast these past ten years have gone by and everything I have endured that has shaped me to be who I am today. I am so incredibly blessed to be alive today and even with the tumor in my head, I feel the healthiest and the happiest (for so many reasons) that I have felt in TEN YEARS.
SO this Valentines day: February 14, 2023 I will be shaving my head. A lot of people have asked me if I am going to wear wigs, my response to that question is mutual, yes and no. I have 11 “fun” wigs that I wear occasionally, but wearing a wig to cover up the baldness and my image is just not my personality.
Hair may not seem like a big deal to most people, but once you lose it as a teenage girl, then get a tease of hair-growth for 3 years just to fall back out.. you don’t know how damn bad I just want to be able to put it is a messy bun. I haven’t had hair in almost a decade which feels crazy, I am hoping that this decision that I have chosen to make acts as a fresh start for me hair growth. If not, that’s okay. As long as I am here living this amazing life, I’m blessed and Happy.
I have been so heart broken from the loss of Gina Hollenbeck that I couldn’t come up with words to say these past two days.
Never smoked a day in her life, Gina had been fighting stage 4 lung cancer since 2015. And boy did she fight. She went through so many different treatments and trials and every time she was told there isn’t anything else to treat her cancer, God provided Miracles and Gina continued to fight with lots of faith and a smile on her face.
Gina and I had a great connection when we first met in 2016, both being Courage Thru Cancer Honoree’s, thanks to Jon Neal and everyone else in the Courage Thru Cancer crew. Ever since that night we have been bonded with a friendship full of laughs, prayers, hope and strength (and many other things I will always keep in my heart.)The way Gina lived her life with hope and not worry, faith and not doubt was so inspiring to many people, but especially myself. She was my biggest inspiration and always will be.
Gina had trust and love for the Lord than anyone I have ever met in my life. I truly believe that God sent her as an angel down to this earth to prove his work, and she did just that.
One day Gina and I happened to text each other pictures at the same time, both with the verse Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Amazed, we smiled about it knowing this was something God planned, That we both needed to hear it from each other.
Gina’s mantra wasMud or Stars. She described the meaning of this being you can focus on the negative or look for the positive.
The CTC event in 2019 was held at Minglewood Hall, which is not only an event center but also happens to have a tattoo shop. During the event, Gina decided she wanted to go in and get a tattoo “Mud or Stars?” I went in the tattoo room with her and thats when I asked her about the meaning of the saying.
I truly believe that the Lord sent her as an angel down to this earth to prove his work, and she did just that.
Going back through our text messages tonight- some are making me cry, some laugh. In October, I texted Gina wishing her prayers and luck for her scans she was having that day. At the end of her text back she said “Prayer is powerful. I know He can. I hope He will. But whatever the story, I know who I am and whose I am”
We areHIS. She is HIS. and she is with Him.
I am so blessed to have known Gina I am going to take everything that I learned from her to heart and continue to fight stupid cancer the way that she did. I just I wish I could see the smile on her face when Jesus took her in his arms.
Please pray for her husband Greg and her two sons Hudson and Hayden along with her close friends and family.
Gina, I already miss you and you will always be in my heart continuing to inspire me for the rest of my life.
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.
It has been about 10 months since I’ve updated this blog. Im sorry I am really bad at remembering to do this!
Because my cancer is high grade, and has a high rate of recurrence, I have to go to St.Jude every 8 weeks to get brain and spine MRI’s. Monday, May 8th I had Brain and Spine MRI’s , and it showed the lesion that we found 8 weeks before has grown quickly, which has caused swelling in my brain. What i thought was gonna be just 2 days of scans/appointments turned into a whole week and a half of more Iv’s, more scans (MET/PET), and more appointments. As of right now, I am not symptomatic, so I will not be having surgery right away. I am having more scans in 8 weeks. The time period in between is watching and waiting, but mostly praying . At the end of my crazy week, I Graduated May 12 from St. Jude, and May 18 from Houston High school. I am very blessed to say that. Four years ago, I was told it would be a Miracle if I made it to my high school graduation. I am very blessed to still be here today, celebrating my Graduation(s). I also want to say thank you so much to everyone who has kept me in their prayers, please keep them coming!!
I figured now would be a good time to put an update on my blog, considering the last blog I wrote was about scanxiety the night before my scans on May 2, 2016. Those MRI’s showed a new lesion/spot on my brain, which is never good news. The spot that lit up on my brain was too small to do surgery on or tell exactly what it was, so my doctors wanted to wait 8 weeks to give this lesion/spot time grow and then scan again; on the Brain and Spine followed by a Spinal Tap. Of course those 8 weeks there was a lot on my mind not knowing what is growing inside my brain, and whether or not it is growing. I had a lot of questions I wanted to ask but knew there was no answer to just yet: Is my cancer still spreading? How much is it growing? Will I need more treatment? Is it even operable? Will I have to go through everything I just did all over again? and thats when I just put all of my trust into God’s plan for me. I have to remind myself a lot to “be still and know” (psalm 46:10)
And here we are 8 weeks later. July 5th ,6th and 7th.
July 5, 2016 I had my Brain MRI, which I did not have to get sedated for because it is only an hour long and I actually watched a movie during this one.
July 6, 2016 Ihad my Spine MRI around 1:00 p.m. I am not a fan of Spine MRI’s because they are longer than my brain MRI’s usually are and being as claustrophobic as I am, I do not enjoy being all the way inside a machine that is like 5 inches away from my face/body. Unfortunately I had to suck this one up though and go through the whole thing without being sedated or taking any medications before. After my MRI’s I got sedated for my spinal tap, which they did not get on the first try so they had to do 2 spinal taps. When I recovered from sedation it was 6:00 p.m. I had been fasting since midnight the night before. I wasn’t that hungry because of the pain I was in. The rest of the day I was really loopy from sedation and pain meds.
July 7, 2016 The next morning I woke up really sore and couldn’t walk without being in a lot of pain. I had to go back to the hospital to get morphine drip, and my monthly benadryl/antibiotic drip through IV. I spent the rest of the day in bed pretty sick.
I got good and bad news from my MRIs. The good news was my spine MRI and spinal tap showed no cancer cells, the bad news is the lesion/spot on my brain has grown 3MM. It is still too small to do surgery. My next set of scans is in 6 weeks, and then we will go from there. This week was a very long one. So thank you everyone who has been praying for me and I will try my best to keep updating!!! ❤
scanx·i·e·ty (n.) the feeling of anxiousness before an MRI. The all-nighters you pull because you can’t sleep from stressing over what the results could be. The anticipation while spending, what feels like all day, in the waiting room.
Im writing this because scanxiety is hitting me pretty hard tonight- I have scans tomorrow May 2,2016. I haven’t updated my blog in a while, so I thought I might as well do that now since I can’t fall asleep. The last time I updated on here about myself, I finished radiation and did not proceed to do chemo because of the pathology reports showing a high grade glioma/anaplastic ependymoma grade 3. Since then I have slowly been trying to get my life back on track. I started going back to school (half-days for right now). And I am getting less time in the hospital and more time living my life to the fullest and trying to cross things off of my bucket list. I’m still getting sick from the side effects of my radiation. Lately I’ve been having headaches, nausea, and my short term memory is not the best, I feel like these past few weeks, all of these have been worse than they usually are- which is why I think I’m more anxious about my MRI results tomorrow. With my diagnosis, I have to get MRI’s every 2 months at St.Jude, and a stable scan is a miracle. I don’t even want to think/talk about what would happen next if the scan is not what we want. So I just pray because I know God’s got me. Please pray for great results and another 2 months to live and to breathe.
Yesterday January 5, 2016 one of my St. Jude friends Hannah Tate earned her angel wings. Cancer just took over her body. Just a couple weeks ago I saw Hannah at St.Jude and she was so happy because she was getting to go home. I hugged her goodbye- I would’ve never thought that would be the last time I’d see her. Hannah had to take on a tough battle, but with her faith cancer had nothing on her. I know Hannah is now cancer free in heaven, with many other St.Jude angels. I will miss you so much Hannah but we made memories together. Like when we got makeovers at St.Jude on my birthday, and signed autographs for the memphis grizzlies, all the selfies we took on your phone, talking about how much we both hate how radiation tastes and it doesn’t make sense to anyone else…And I will hold on to those memories forever. I am so proud to have known you Hannah, I know you’re gonna be watching over us as we fight our battles.
I have never been so happy to say goodbye to this year. 2015 has been so shitty to me. Starting with a couple of my friends from St.Jude passing away, along with my Grandfather from cancer. My mom got diagnosed with breast cancer and I had to play her roll in the family while watching her fight a really tough fight, and going through a breakup all at the same time. The cherry on top: I got re-diagnosed with 2 very aggressive brain cancers, brain surgery, and a long rough treatment causing me to miss my junior year of high school. BUT ITS OKAY i’m putting those ugly things behind me and I will always cherish the great moments of this year- like winning princess on homecoming court, becoming good friends with my favorite NBA players (and Justin Timberlake), Going to the CMA’s as Kelsea Ballerini’s date, spending time in NYC and being a guest on the Today show, Having a WHOLE DAY dedicated to me, and also getting a brand new car. (thanks goodmegan)
Im looking forward to a new, great year. HELLO 2016
So today was a tough one, I walked out of St.Jude with about 10 sheets of pathology reports with nothing but bad news. I was actually shared this news a couple weeks ago, but today it was “official”, and now I’m ready to share. Since my case is so rare, so many doctors are looking at my cancer over and over again trying to figure it out. Looking back on my new cancer, what they thought to be as PNET…turns out to be a high grade glioma, which if you know anything about brain tumors/brain cancers, you know that glioma is the worst of the worst and such a nasty aggressive cancer. The first thing I thought when I heard this news is that two people who I was very close with lost their lives due to their cancer morphing into a glioma. With that being said, the survival rates are very very low. My original treatment plan was full cranium/spinal radiation to treat my anaplastic ependymoma grade 3, then give my body a couple weeks of rest and treat the PNET with 4 rounds of intense chemo. My doctors have decided to stop all treatments for now because of my new diagnosis, chemo would only hurt me right now. I was told this cancer WILL come back, whether its in 2 months or 2 years.. nobody knows. But when it does come back I will have brain surgery for the 3rd time (if it’s in an operable location). Then God only knows what will happen from there. But I will be having brain and spine MRI’s every 2 months until the bastard returns. The only medicine that can help me right now is prayer. My neurologist shared this bible verse with me a couple months ago and it really gives me hope- Philippians 1:6 6 “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” I know that God is not done with me, statistics might be done with me.. but God is not. I have a future and God has planned out my future.. I am not ready to leave this earth… screw you cancer. Thank you everyone so much who has supported me and kept me in their thoughts and prayers!! So much love!
Let me tell you about the best night of my life!! So for Kelsea Ballerini’s first time attending the CMA’s as an artist, she invited ME to be her date!! The day before the CMA’s, I was reunited with Kelsea and we got to spend some time with each other and her crew. We picked out my dress with the help of Krista Roser, Kelsea’s stylist. The morning of the CMA’s, I got all glammed up by kelsea’s makeup artist Meegen Pearson. Once Kelsea and I were all ready, we walked the red carpet, which was sooooo much fun, like every girls dream. We got interviewed so many times and here are links to some of them: wsmvnashville , people.com
I got the chance to meet many country artists, who were so down to earth and really nice people, I cant even thank Kelsea enough for letting me be a part of this huge night for her, and walking the red carpet, fan-girling, dancing, and crying with her. Now, when we had to say goodbye we both were balling, we are contagious criers so the tears kept coming. Kelsea is a TRUE friend and I love her so much. She knows that I am about to go through so much so she wanted me to have fun before I do that.
There are haters out there and people who call me “lucky” for all of this, or maybe that I don’t deserve all this attention….but you don’t see me when I’m sick, throwing up, too weak to walk, can’t eat, can’t sleep. Just know that when you’re complaining about your homework or how sore you are from practice.. there are people who wish they could have those small problems. I would trade all this attention that you’re so “jealous” of just to be cancer-free and live a normal life. Starting December I will be in the hospital for 4 months straight, that includes Christmas and New Years. So please think again before you say things.
BUT the positive comments outweigh the negative ones, so thank you to the people who are geniunley happy for me and praying for me.