I’d like to start out by say HELLO world! My name is Tasha Castagna, and I have a brain tumor. I’m not a writer, I’m not a blogger. So forgive me if I don’t have the wording or formatting of a good blog down. Here’s my story.

My Journey with a Brain Tumor

My life took an unexpected turn when I was diagnosed with a brain tumor after enduring years of debilitating symptoms. In this emotional and inspiring blog post, I will share a deeply personal story, shedding light on the challenges, fears, and revelations that came with my diagnosis.

A Rollercoaster of Symptoms

My journey began with chronic migraines, which gradually worsened over the years, affecting my daily life as a mother, wife, grandmother, and business owner. Despite seeking medical help and trying various treatments, my condition continued to deteriorate, accompanied by new distressing symptoms such as memory loss, imbalance, and shortness of breath.

The Terrifying Diagnosis

After undergoing a series of tests, I received the life-altering news – I had a 3.7 cm foramen magnum meningioma with brainstem compression, along with signs of early Alzheimer’s disease. This revelation provided an explanation for my myriad of symptoms, validating my struggles and fears.

Facing the Unknown

As I grappled with the reality of my diagnosis, I found myself confronting daunting questions about my future. How would I break the news to my family, especially my husband? The weight of those two words – “brain tumor” – loomed heavily as I contemplated the impact on my loved ones.

My bravery and resilience in the face of such adversity serve as a beacon of hope and strength. I knew I had to share my story, my vulnerability and fears and the importance of raising awareness and building connections with others facing similar challenges.

MRI RESULTS

I continue in Part 2, where I give insight into my determination and unwavering spirit. Stay tuned for the next chapter of my extraordinary journey.

I’m a mom, a wife, a grandmother and a business owner. So if I don’t get this blogging thing right the first time, don’t worry, I’ll catch on.

My headaches started about 10 years ago, and over the years progressively got worse. I did what anyone would do and made an appointment with my primary doctor. He diagnosed me with chronic migraines and prescribed me medication to take, which I faithfully did. These headaches would get so bad at times they were debilitating. So, trust me when I say I took the medication faithfully.

I guess one of the main reasons for this blog is to bring awareness, and to finally tell my story, build connections with others who have faced something similar.

During the 10 years of Chronic Migraine treatment, nothing seemed to work. Maybe it took the edge off at first, but eventually nothing made these horrible headaches go away. Over time, the headaches worsened and the onset of new symptoms started to occur. I would get very nauseated for no reason, very tired all the time like my energy had just been sucked right out of me. I went back to my doctor several times and we tried different treatments and medications. My doctor is a very caring man who I could tell felt very bad for me. He tried everything under the sun to help me, but with no success.

I started to wonder if this was my new life, my new version of me. Always sick, always not feeling good. This is not who I was. I was a go getter, a wife, a mom, a grandma, a business owner. I could not afford to be down all of the time. I had stuff to do!

I won’t bore you with all the back and forth details over the years, but a few new symptoms snuck up on me that I was not prepared to deal with. Memory loss, shortness of breath and imbalance. I thought to myself, I’ve learned to deal with the headaches and nausea, lack of energy and so on, but this new stuff was just not something I was prepared for nor was I ok with. Something had to change.

Examples of these new symptoms were “imbalance”. I would be walking and trip over my own feet. I laughed at myself a few times thinking omg! I’m so fricken clumsy. But in reality, there was a reason for it. I just didn’t know it yet. I have to say the “Memory Loss” was one that scared me the most, even over the shortness of breath which I chalked up to having asthma. Although, My asthma had not been bothering me for many years.

Back to the Memory Loss. This was scary. I would be driving places and forget how I got there. I would forget conversations and mix up dates to important things, forget where I put stuff, or why I walked into a room and what I actually went in the room for. Yeah I know, we’ve all done that at one time or another (lol) but everything all together was indicating to me that it was something more. I couldn’t shake the feeling that something was wrong.

I went back to my doctor who put me through test after test including breathing tests, measuring oxygen levels, brain mapping, memory tests, you name it I’ve been through it. And needless to say I pretty much failed every single test he put me through.

His initial thought was possibly Early onset Alzheimer’s , but he really felt I was too young to have that. He sent me down to do an MRI. Now anyone who knows me know I’m claustrophobic. I don’t even like to fly. I don’t like being in anywhere that I can not get out of if I need to. It took some convincing. Not the doctor, me to myself, that I could do this and that I needed to find out what was wrong.

We scheduled my MRI and I build myself up to it. I remember sitting in the waiting room, heart pounding, palms sweating, fearing every time the nurse would come out they would call my name. I know, I know. It’s just an MRI right? Why am I so terrified to do this test? Maybe, part of it was being in small places, but I think the real reason behind it was because I just felt in my heart something was wrong and they would find it and it wouldn’t be good.

So here it comes, they finally call my name and I’m headed back to the room with the tiny tunnel like machine. Eekks! I’m all alone, I could just leave and not do it. But, then I’d never know and the uncertainty was killing me. I go back and get ready for this test. They must have seen it on my face, or maybe it was my constant fidgeting, but the technician said don’t worry.

I’ll be here with you the whole time and if you need to come out here is a button to push that will immediately stop the test and slide you right out. A button? ok. I think I can do this. I can get out if I need to with a push of a button. She said the test would only take 15-20 minutes and I’d be on my way home.

I don’t know if any of you reading this are claustrophobic, but if you are I’m sure you can feel my pain. The test is loud, even with ear plugs and annoying. I think I only hit the panic button twice as far as I can remember. The last time I hit it one of the technicians said I will keep my hand on your leg so you know I’m here. I felt like such a big baby at this point. But I have to say it was comforting.

About half way through the test they stopped it and pulled me out. I was thinking to myself wow, that was faster than they said. Awesome I’m done! Then she told me they had to call the doctor so it would be a few minutes. That was the longest few minutes of my life. And she couldn’t tell me why. She couldn’t give me any information. One of the tech’s came back to me and said my doctor is requesting to re do the test with contrast. They explained that to me because I had no idea what that was. I asked why? And he said to see better. I thought that was strange but agreed to it.

Once I was done, I left. And that was it. Of course I did the test on a Thursday so I had to wait to get the results. Well, actually I would have had to wait but once they came in my MyChart of course I looked. I remember the day like it was yesterday.

I was alone, my husband was fishing, and I sat in my chair and went straight to google. Trying to decipher these long medical words thinking to myself “oh my god” what does this mean.

I couldn’t reach my doctor because by this time it was the weekend. Being alone with your thoughts after reading that you have a brain tumor is a scary experience.

Thankfully my brother in law is a nurse in a different county so I sent my medical records to him and he broke it down for me. I was diagnosed with a foramen magnum meningioma with brainstem compression.

Along with a small amount of white matter disease. Meaning there are signs of early Alzheimer’s disease.

This is what I received in my MyChart. Now, I’m sure you can see why I was confused. These words are foreign to me.

Anyway, my brain tumor is 3.7 cm and is in a rare location. It’s a skull based and it’s in the cavity where the brainstem meets the spinal cord. The tumor is pressed up against both of them. From what I understand now, the cavity is not that big so over time as the tumor grew it started pushing up against my brainstem moving to right side as well as laying on my spinal cord.

This explains all of my symptoms clearly now. The loss of time, balance, forgetfulness, headaches over many years, nausea, dizziness, all of it.

Now that it’s confirmed, it’s real. All I could think of was my family. My husband, my kids… what was I going to tell them? How was I going to tell my husband when he gets home that I have a brain tumor?

Those are two of the scariest words to have to put together.

I’m doing this blog in a few different parts because it’s so long. And, I have to get it right if I’m going to help anyone else who maybe lost and confused and in a similar situation.

Please read part 2.

Tasha Castagna