#braintumor

yall ever find out that a member of your family youu havent seen in a long time isnt actually dead?

In Feb. of this year I went blind and got very sick. It was discovered that I had a brain tumor. To all of my mutuals that wondered where I’ve been and why I haven’t uploaded any new INTP/anime/manga/book fanfictions that’s why. I was literally blind. It was terrifying not being able to see...it made me appreciate so much more having that ability.  Being blind and mostly helpless left me with a lot of time to think..which, as any INTP will tell you is both a blessing and a curse. After a spinal tap and meds and treatments I have regained some of my vision back. I can read and function mostly the same as I did prior to the illness I just squint a bit more and I have bifocals now.

The year 2019 was the year of me facing all of my greatest fears:

The fear of losing my mind

The fear of going blind

The fear of dying

The fear of losing my mobility

I did not face these fears alone but there were often time it felt that way. Society was cruel and ignorant when it came to my cancer. It was not unusual to have someone say to me “You don’t look sick”, or “Are you sure you have cancer? You haven’t lost all your hair.”  

On top of that the type of tumor I have is extremely rare and not much is really known about it so trying to explain it to other people was nigh impossible especially since I didn’t really understand that much about it myself.

Her şey bundan tam 5 ay önce başladı. Korkunç baş ve boyun ağrılarım dayanılmaz hale geldiğinde tek tesellim "Kendimi bildim bileli başım ağrıyor zaten, geçer." di. Geçmedi.

Okul işleri, dans yarışmaları, sene sonu temsilleri içinde debelenirken, ne başımın ağrısı geçti, ne de bu konuda bir şey yapacak vaktim oldu. Ta ki bir gece bilmem kaçıncı ağrı kesiciyi alıp epilepsi nöbeti geçirene kadar... O temmuz gecesi yanımda Nilay olmasa ne yapardım bilmiyorum. Kendime geldiğimde ilk sorduğum soru "Hangi yıldayız?" dı çünkü.

Benim beynimdeki tümör ile tanışmam böyle başladı. "30 yaşında, hayat dolu bir kadının başına böyle bir şey nasıl gelebilir Tanrım?" klişeleri ile sizleri drama boğmak istemem. Ama tecrübelerimi paylaşmayı, bir kişiye bile ulaşsa, bu yolda destek olmayı çok isterim. Ben ameliyat olalı henüz 15 gün oldu, aslına bakarsanız her şey benim için de oldukça yeni. Fakat tecrübeler kıymetli, dans partnerimin de hep söylediği gibi "Haydi birlikte tecrübelenelim!"

Hello Tumor!

It all started 5 months ago. When my terrrible headache was unbearable, my only consolidation was “I have had a headache since I know myself, it will pass.” Except, it didn’t. 

While struggling desperately with school work, dance competitions and end of the year shows neither did my headche eased up, nor I had the time to deal with it. Until one night I had another painkiller and had an epilepsy crisis... I don’t know what would have happened to me if Nilay hadn’t been there. As the first question I asked when I regained consciousness was “Which year is it?”

The story of how I met my brain tumor started like this. I am not going to bore you to death with “How could that happen to a 30 year old woman who is full of life, dear God” cliches. However, I want to share my expericences, and give support even if this post reaches only a few people. It has been 15 days since I was operated so everything is new to me, as well. But experiences are valuable, like my dance partner says, “Lets get experienced together!”

Yesterday, I received my genetic test results; it cost $250 and analyzed 26 genes related to auto-inflammatory diseases. In a big grey box it stated, “Negative result. No pathogenic sequence variants or deletions/duplications identified.” My heart sank, then lifted, then sank again and then broke into pieces. Every time I receive a negative test result, I go through the same wave of emotions. It’s not that I hope I have a terrible disease or some genetic mutation that I could potentially pass along to my children, but I’m hoping for an answer to this mysterious illness that has taken over my life. It’s a bittersweet feeling when my sixth hospitalization in the past few months results in no conclusive findings. I’m relieved that I wasn’t diagnosed with a serious illness, but I’m left with doubts about what the heck is going on with me and unanswered questions about my future.  The hard part about many of these tests is that in fine print it says, “This negative test result does not eliminate the possibility that the individual’s condition has a genetic component. Clinical follow up of this individual and their family members may still be warranted.” So, essentially, I spent $250 to find out that science isn’t sure what I have (or don’t have).

I remember the first time I learned that doctors didn’t have the answer to everything. A similar experience to when you realize your parents aren’t superhumans, there’s a part of you that loses a little faith and another part of you that is humbled by all that science has discovered so far and even more appreciative to be alive now as opposed to 50 years ago.

When my brain tumor grew back just 6 months after having it surgically removed, my doctors presented me with two treatment options: surgery or radiation. Due to the aggressive nature of my tumor and how rare it was, my top-notch doctors at NYU told me that they just didn’t know which one I should choose. Frustrated and afraid of making the wrong choice, I went to four other hospitals including Johns Hopkins and the NIH for second, third and fourth opinions, each time, hoping for a clue as to which treatment would be best for me. Ultimately, the decision was made for me because as time went on, my tumor became inoperable and forced me to undergo radiation.

After the whole brain tumor fiasco, I was sure that the rest of my life would be smooth sailing.  How could it not be? In my journey to diagnosis, I was faced with a torn esophagus, a collapsed lung, pnuemomediastinum, subcutaneous emphysema, severe neuralgia, and migraines. When my tumor grew back, I also experienced papilledema of both eyes and dysfunction of cranial nerves 9-12 (paralyzed right vocal cord, loss of taste on the back third of my tongue on the right side, inability to shrug my right shoulder, etc.).  Everyone I spoke to reassured me that this would be my biggest obstacle in life and pointed out how lucky I was that I experienced all this adversity at a young age, when I could not only recover faster and more fully than someone who was older, but that I would bounce back a stronger woman and be able to help others who experience obstacles later in life.

Once I recovered from radiation, I faced a whole new set of issues. At 22 years of age, nobody informed me of the dangers of getting back on my feet too quickly. I had decided to take an anatomy and physiology class at community college to learn more about my body and to try my hand at science – a topic that had never come easily, but that sparked a newfound interest I never expected to hold. I remember walking up the stairs to my class, my backpack stuffed to the brim with textbooks and binders. I had this strange dull ache in my leg the past week or so, but didn’t think much of it until one morning when I woke up in excruciating pain. I called my mom from my bed, crying from the pain shooting down my leg, unable to walk. Long story short, I was diagnosed with sciatica – a painful condition I only recalled older people complaining of. No doctor I went to was sure of where my pain was actually coming from. After multiple MRIs and CT scans, the only findings were two minor disc bulges between L4/L5 and L5/S1 and a minor degree of degenerative disc disease. I struggled for the next 3-4 years with episodes of terrible pain and underwent numerous treatments including epidural injections, SI joint injections, physical therapy, acupuncture, chiropractic treatment, spinal decompression therapy, and a botox injection into my piriformis muscle. The theory was that I had jumped back into my regular routine too quickly and my back muscles weren’t prepared for the spike in activity, resulting in an inflammatory response that aggravated my sciatic nerve.

Throughout all of this, I unsurprisingly fell into a deep depression and was diagnosed with major depressive disorder and generalized anxiety disorder (among other things that I’ll probably share more about in another post). After receiving treatment, I learned to view my health struggles as positive experiences. They set me on a new career path in medicine, helped me realize how strong I really am, and also filtered the people in my life, leaving me with only those who supported me no matter what and got rid of those fair weather friends.