tcbrainjourney-blog

[tcbrainjourney-blog]

Yesterday I decided to take my son to the Children’s museum. Where he could play about and I could sit and watch. Now my doctor has “suggested” I not drive since my vertigo and nausea seems to never leave.  I have had a few incidents where I have missed my exists but nothing too extreme. Well… here we are driving down the highway, a place we had drive 100 times before. I peeked down to see how fast I was going and looked back and suddenly felt panic throughout my body. I looked around and said to my son, did we miss our exit? I did not recognize anything around me. But it did not make sense that we missed our exit, we had not been driving for that long…. I about to have a panic attack. I knew this did not make sense, so I had to calm myself. I began to slowly look around for something that look familiar, in the direction of where the “tall buildings” should be and within a few mins began to find things I knew. As I started to find my way, I calmed down and centered myself again.

I can not explain the fear I felt for about 10 mins as I felt like I lost in a place I knew so well. Almost like being lost in your own house.

Just another day living with a brain tumor.

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Update

Due to symptoms getting worse and kidneys not being able to take the medications and showing distress. Surgery has been pushed up to July 11th. All flights have been booked and this is getting real now. Thanks to those that have helped this week and made this so can have my life back!!

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When you first hear the words "you have tumor," I believe the typical thoughts began to circulate in your brain. These thoughts include: "Am I going to die," "How will I take care of my family," etc. The thought "I may lose some of my closest friends" never comes to mind. As my plan began to unfold, my circle of friends began to diminish. The constant messages and words of encouragement began to fade. Invites to hang out or go to dinner weren't sent. At first, I felt hurt and betrayed. I blamed my tumor…I began to lean on the friends that stepped up. Over time I realized that I couldn't take their disappearances personally.  I am not scaring them away, it is the bigger world that is doing that…Everyone handles difficult situations in their own way, just like patients handled their diagnoses. I am extremely open about my diagnosis and shared my emotions with many people and started a blog. I have met other individuals who are more private about sharing their diagnosis. I dramatically changed and will continue to. I had a have a time being around ego driven friends as I can’t give them the attention they desire when my focus is, for obvious reasons, elsewhere. I can’t listen to my philosophical friends ponder what life is all about when they aren’t pushing the limits like I am. I can’t stand listening to the "woe is me" friends as they had no understanding that a bad day could be much worse. I can’t be around my drama crazy friends because all I want is peace in my life.. I am losing some friends, but I am also learning some valuable lessons. I am learning not every friendship is beautiful and long-lasting. Sometimes people come into your life to show you who you can be, to teach you to love yourself, to make you feel better for a little while, or to just be someone to walk with at night and spill your life onto. Not everyone is going to stay forever.  We move on, keep going and thank them for what they've given us. In the end, I honestly don’t think I really knew what true friendship was until now.

[tcbrainjourney-blog]

Beating them to the punch.

 Have you every cut your hair short and went through a stage that you hated to look in the mirror?

Well I figured I could overcome that by just cutting my hair now! They will be saving the back of my head for surgery, so today my son and I got hair cuts together!

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Scheduled Surgery

June 2019

Dr. Kim’s office called to schedule my surgery. He only does 45 of these surgery’s every year. This surgery is the most dangerous brain surgery there is. I am scheduled for Aug but if my symptoms get worse, they will need to push it up. As exciting as it is to have brain surgery and feel better the idea of having it is frightening.

There are so many details to put together, my son and my furry family. (2 dogs and a cat). I do not have a lot of family support so it will be a struggle. My job has allowed me to take some time off to get my affairs in order. … So it begins.

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Here I am sick, with a “cyst” on my pineal gland, nothing else wrong with me and doctors saying there is NO WAY that could be it. Being there person, I am, there is NO WAY I am going to live my life, laying on the sofa and enjoy life. I enjoy life to the fullest. My son is my world and we do everything together, we travel, we bike, we hike and just love the outdoors. The way this illness just sudden whacked me on my ass took all of what we loved from us. There are days that it is impossible to get out of bed. These doctors must be crazy that I am going to accept an I do not know as the answer. I would find a doctor that could be answers of what the pineal gland does and that operates on them. In doing my research I found 5 doctors only in the US, and the waiting list to see them! Whoa. I reached out to Dr. Kim in Houston, TX. He was the closest to me in Denver, CO. Here is some research to help you understand: https://www.youtube.com/watch?v=Po7aQcTr10Q https://www.youtube.com/watch?v=Zzw1BhP7Ddk&t=5s https://www.youtube.com/watch?v=Y7UROm5GJxY

During my trip to Houston, Dr. Kim spent 2 hours with me with a team of specialist. Here is what I learn: Due to the pineal gland's location, any tumor or cyst formation would lead to the compression of the aqueduct of Sylvius. It is the aqueduct of Sylvius that allows the cerebrospinal fluid (CSF) to circulate out. When there is a blockage to this area by an abnormal pineal gland, the passage of the duct is blocked, and CSF pressure builds up, leading to hydrocephalus. This causes nausea, vomiting, visual changes, headaches, seizures, and memory changes. This increase in intracranial pressure can even be life-threatening, prompting emergency treatment. All the symptoms that I have been showing for the last several months, yet doctors have ignored my symptoms and dismissed. Why don’t doctors know what these tumors? Because in some old textbook it says, Pineal Gland Cyst is asemantic and if there is a tumor it is benign. News flash, your textbooks are out of date and being in the medical field means it is your responsibility to continue your studies and stay up to date with science!

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If you know my story – you can skip this entry. If you are new to my blog, here is a back story.

November 2017 – March 2019

When did it all begin? When did I know? It is a strange thing that after you become sick you can look back at your life and can connect all the dots and think why did I not see it then? Well, life. We get so busy with life and our kids. Working and the daily grind to pay bills that we forget to pay attention to our bodies. Doctors today visit with patients for 15 mins list for the main symptom and treat symptoms, they are not looking for root causes. Once the problem progresses to an acute issue, then they are paying attention. If you are lucky.

My tumor is located on the pineal gland. The tumor grows around the gland stopping the function of the gland and applying pressure to nerves and brain tissue. What does the pineal gland do? Being the last gland in the Endocrine system, doctors are not 100% certain. They do know melatonin is produced in the pineal gland which assistance with reproductive and sleep hormones.

December 2017, I had a very odd partial seizure that began with abdominal pain. I was unable to move my entire upper body and fell to the floor. It lasted about 5-7 mins. We called 911 and I was told I had a panic attack. Have never experienced anything like this before, I listened and trusted this was what happened. However, I was just sitting and relaxing prior to it happening. I was not stressing or anxious about anything, so I did doubt things a bit.

In June of 2018, I had another episode like the above. Thinking this was a panic attack, I laid on the floor and controlled my breathing. Stayed relaxed but the seizure still came on. I laid on the sofa very tired for the rest of the day.

The following week, my face felt numb under my eyes. Thinking I had a nasal infection, I went to Urgent care. They said there was not any infection and to follow up with my PCP for an MRI. Due to life being busy, I did not follow-up. I bought some Sudafed O.o

I felt pretty good for the next few months… or at least I thought! Now that I know the difference during this time, I was experiencing problems with direction and memory. Even while using navigation, I would miss my exits.   Or know where I was going and be near my house and still end up in the wrong place. I would forget to pick my son up from school, take him to karate on the wrong days, take him to school when there was no school, lose my car in the parking lot at work over and over, miss meetings at work. just things that made me feel like I was getting old a lot faster than I thought I should me. Things I often tried to play off with a laugh. I was having vision problems and had my glasses adjusted. These are things, I know NOW are because of a brain tumor.

November of 2018, I began to feel very lethargic, I went to my doctor several times and he was not listening. He kept giving me anti-depressants. My doctor and my sons doctor share an office, during one of my son’s visits I remember telling my sons doctor it feels like someone needs to take a shovel and remove me from the floor. I can’t move from the bed. She checked my kidneys and ordered vit b shots. She was more helpful than my own doctor. Within the week, I had another seizure and was in the hospital. It was about this time I knew in my heart something was not right and I needed to find a doctor that could work with me to find out what was happening. I began to get scared.

I won’t bored you with a play by play 😊 but from Dec- Mar my episodes began to get worse to the point where I was vomiting all the time, having vertigo almost constantly, seizures every time my period was coming and an over all feeling of death.

In March, a “cyst” was found on the pineal gland was found and the radiologist said was not the reason for my sudden illness…….

Check out my next blog… to read what happened next!

[tcbrainjourney-blog]

Hello, my name is Tiffany and welcome to my blog. In March of 2019, I was diagnosed with a rare brain tumor. Only 1-3% of people have this tumor and of those only, 1% of those people will experience symptoms. This blog is a record of my journey, it is also a place to release the fear and stress, that comes along with this battle. Thank you for joining me on this journey.