I Had a Brain Tumor
but I’m fine now.
Everything begins somewhere.
A tremor in the left hand, slight muscle weakness, the inability to paint my own fingernails. I accepted these changes as subjects of fascination — idiosyncrasies particular to my body. When I told my mother, she suggested that I incorporate more vitamin C into my diet.
In winter of 2010, the snow piled up against the windows of my garden apartment while I vomited breakfast, then water, and finally a bitter yellow substance for an entire day until I was too weak to move to the bathroom anymore. I fell asleep on the floor wondering whether I would wake up the following day.
How sick do you have to be to call for an ambulance?’ I had texted my roommate who was away on holiday.
After that episode, I began to experience strange throbbing headaches — little lightning storms that I combated by closing my eyes and standing perfectly still until they receded. I lived alone then, an hour into the depths of Brooklyn, in an Italian neighborhood that I reluctantly cherished. I took dance classes five nights a week, unless I was attending a reading or a lecture or some party somewhere. Those were long days, late nights. I lived off coffee and dollar slices of pizza. My fridge held almost nothing but pickles and condiments.
Soon, the headaches joined forces with crippling vertigo. Little spots formed at the edges of my vision. Nausea overwhelmed me in the mornings. I was thin, but that was fashionable.
Once, when the headaches were frequent and fierce, I told my mother that I felt as though someone were pinching the back of my neck and squeezing my brain. I didn’t know it at the time — I wouldn’t find out for months — but I wasn’t wrong.
Near the end of October 2010, there was an early winter storm that swept through New England. My co-worker, who had been tracking my complaints over the months, escorted me to a nearby clinic.
From there, things progressed quickly. I was given strict instructions to take a cab directly to the hospital. Do not walk, do not get on the train. I nodded dutifully as I continued throwing up into an H&M shopping bag. In the emergency room at Beth Israel, a nurse took me for a CT scan. I had never been in a hospital before. I waited for the results. A concerned attendant peeked through the door at me, then withdrew again. More concerned faces. Bad news, they intoned, without quite saying what was bad. I was admitted, decorated with IVs, and told to wait again. At one point, a young doctor said to me, “That’s quite the goober you’ve got in your noggin.” Goober? That was the first I’d heard of it. He showed me the scans.
When I think of tumors, I think of metaphors of invasion. Something foreign, forceful, and undesired. The growth of darkness where before there was light. The young doctor pointed to the screen and said, “There.” Therewas a shadow at the back of my mind. A sphere lodged against the cerebellum, a presence that was both alien and of myself. Not a tumor yet, but not not a tumor either. To confirm that either way required a series of MRIs.
From the emergency room, I was moved to the neuro step-down unit. That was serious, a friend informed me by text. An older doctor whose glasses sat at the tip of his nose and whose voice was firm but kindly throughout his explanation of the condition hemangioblastoma agreed that it was indeed serious.
At that age, I thought I had things figured out. I thought I was invincible. I could take another Advil. I could push through the headaches, the vertigo, the nausea. Everything was fine, I’d convinced myself, because everything was supposed to be fine. Sickness, tumors, brain surgery: those things happened to other people. The doctor asked to schedule the surgery immediately. I asked for a moment. For twenty minutes straight, I sobbed aloud at the edge of my hospital bed. I don’t want this, I can’t do it, I don’t want this. How did this happen? Why?
Hemangioblastoma are vascular tumors located in the cerebellum, brain stem, or spinal cord. Accounting for less than 2% of tumors in the central nervous system, hemangioblastoma typically affect middle-aged individuals and can be associated with Von Hippel-Lindau syndrome in which tumors recur continuously throughout a person’s lifetime. They are noncancerous, but can cause serious complications over time. As long as surgical excision is possible, prognoses tend to be positive.
To ask why or how, I was diagnosed with a rare tumor known to affect an age range far beyond my own, is to commit my thoughts to a wheel of irrationality. I could turn the question over and over and never have an answer. From there on out, I moved as though in a dream.
I had to call my mother. Nothing could happen until I’d seen her in person. But when she answered, I couldn’t form the words. Handing the phone over, I asked the doctor to explain the problem. Three thousand miles away, a grown woman pulled over to the side of the road and cried, then purchased a plane ticket so that she could attend the imminent craniotomy of her frightened twenty-something daughter.
My mother kissed my face, told me she loved me, but did not accompany me to the prep room. The walls were white and the hallways went forever. Four hours of surgery turned into eight. There had been some bleeding, they said.
Four hours of surgery turned into eight. There had been some bleeding, they said. I woke panicked and groggy. What time was it? Did my mother know I was okay? In the ICU, the nurses told me I had the healthiest lungs in the ward. My head was so heavy. I remember the morphine made me sick. I thought my stitches would split back open.
Slowly, the physical evidence of trauma faded. I wrote so many pages pondering the dreamless darkness of those eight hours. If I had died, would they have gone on forever? Would I have known myself missed? Had I glimpsed into the after and found it empty? For weeks afterward, I dreamt vivid, terrifying flashes that woke me in the night.
Through a scattered plot of points over a period of years, I can trace a path from the first suggestion of something amiss to the doctor’s final diagnosis. At any number of crossroads, I could have turned another way and arrived at the end more abruptly. I think of the neurology appointment I made in March of 2010, then canceled because the headaches had subsided for awhile. Or the end could have been different, could have been worse, could have been nothing. If I had taken more vitamin C or had eaten better or slept more? If the tumor had been cancerous or inoperable? Or — again — that wheel of irrationality.
It’s many years on now and I can climb mountains as well as stairs. I write stories and keep more in my fridge than condiments. My hair has grown out and most of the feeling has come back to my head, though they severed the nerve there. Whenever I tell anyone that I once had a brain tumor, I qualify the statement by adding: but I’m fine now.
At the end, this is the main reason I play the piano, it was my first medicine to come over my pain and the change I had in my life. Please respect my thoughts.
I am so glad that you survived your ordeal with a brain tumor, that you can now climb not only stairs, but mountains, and that you are playing the piano. Bravo!
Dear Mihran, I admire your struggle and strength. I am so glad to hear that you are fine now. I had tumor on the outer side of my head when I was in the elementary school. It took several surgeries to remove it, it gave me traumatic feeling of hospital. I spent too much time in the hospital. But now I am fine too 🙂
Keep playing music and wishing you good health and lots of love from people surrounding you. Thank you for sharing some part of your history. Best wishes..
Your story is scary but your survival is amazing and inspirational. Thank you for sharing it!
Oh hun. That does sound scary. But look at you now… Huggs
Mihran, thank you so much for sharing this account.
It is beautifully written, and truly inspiring.
Very best wishes to you, and your family.
Take care, Emma 🙂
Glad it had a happy ending.
Mihran, thank you for sharing. I’m so glad you are here to tell your story, your strength and talent are very inspiring! Blessings.
Congratulations on your brave journey of overcoming such a monster and in your coming back to life again. You are an inspiration to everyone around you and the world.
What a life changing story. Scary how a person’s life can change on a dime. Glad you survived to share your story.
This is such a terrible yet wonderful story. I am so glad that you survived to tell it. Thank you for sharing my friend.
You lived one of my fears, and kicked ass! So happy to hear about the happy outcome. Thanks for sharing.
Thank you for sharing this story. I am so sorry you had to go through that nightmare, but you survived and this is the most important. Wish you all the very best.
I am sincerely humbled, I am very grateful for your respect and appreciation, it means a lot to me. This has been very difficult to talk about it, that was one of the most difficult and dark times for me and family. This is important to receive the support and encouragement..
God bless the doctors. Thank you again for sharing, you did a great job for other people.
Yes, thank you for the doctors and their entire team. May God Bless their hard work!
In admiration
john
Thank you John – I appreciate your words and respect and understanding!
Mihran I was very confused reading this post, if it was you or your sister that had cancer; but regardless of who it was, pain is pain and fear is fear, blessings to you and your entire family. I hope the news will be good for your cousins son also. Blessings.
Thank you Belinda – I pray for your health and best wishes. I don’t know how to express how difficult was for me and sister. It was extreme pain running into my bones, unable to eat and walk for some time. I appreciate your kind words and encouragement to my cousin son. I have no words to explain the pain we are in now. I wanted always to wish you the best health and success and to everyone here, May God bless you.
God bless you and your family too Mihran; keep the faith. Smiles
Thank you Belinda sincerely from my bottom of mu heart – I admit you are a true friend. May God Bless you and gives you health, light and always keep your smile.
Thank you for your sincere heart. God bless and keep you.
Thank you Belinda – I consider you a true friend. May God Brings you always health and joy!
The same to you and your family Mihran.
I extend my sincerest appreciation to your kindness and respect with great honor. I also extend my greetings to everyone. We are one family,
That we are! Smiles
I too am confused, Mihran, because yours is a first-person account, and your replies to everyone show that this happened to you, but you wrote about your mother coming for “the imminent craniotomy of her frightened twenty-something daughter.”
I and the whole world are blessed that you DID survive the tumor!
Thank you John for your wonderful words and comments, I had the most difficult and severe pain throughout my illness stages. It was dark shadow and I almost felt I am going to loose my life, I keep my faith and I believe in miracles. Thank you so much!
a moving and powerful story. I’m glad you’re fine now.
Thank God you are strong and healthy. I am so happy that you are now enjoying a beautiful life.
What a beautiful stream of consciousness you’ve poured out here over something so terrifying. You held me captivated. Just gorgeous.
Thank you Marian for your wonderful and sincere words. May God Bless you!!
He has. So very much. 🙂
Mihran, Thank you for telling us about your experience. I could never have known that playing a piano contributed to your healing in a way. Could it be the reason it is said by some doctors that listening to music heals the soul especially when depressed, sad, etc?
Thank you Joy, I extend my appreciation to your message. Music was powerful in life while I was going through this stages. Music lifted my dark shadow, and pain. May God Bless you!
God Bless you, too.
Dear Mihran, thank you for your incredibly honesty and will to survive. I feel we are all blessed to have you with us. May the sun always shine on you, your family and loved ones.
Blessings always, Susan x
Dear Susan – I wanted to share with sincere and honesty, after having some challenges on WP and suddenly friends stopped commenting on my blogs. I decided to share my health, as I had a very painful and dark moments. I always kept my faith and I believe in Miracles.
Miracles happen when we least expect them, sometimes in the most unusual way. Old friend go but new friends are always around the corner. Welcome back to the blogging world – I’m still learning my way around myself :).
Blessings, Susan x
Mihrank, I am also one of those who believes in miracles because I believe in God in Heaven.
Oh my, thank you for sharing! I learnt so much for your post. Thank you God you’re fine now.
May God Bless you and protect you – Always avoid Pain.!
Awww, thank you!
My best regards and I appreciate it!
You’re my star, Mih! I’m proud of you and it’s incomprehensible! Just always know that I am a friend. And that our friendship is pure. You don’t have to reblog any of my post, nor like, neither comment, coz even if you don’t visit, I know in my heart we’re friends. And I can’t thank you enough for that. Be strong, we all love you here.
Mihran….now I have started admiring you….the amount of love and warmth you spread….who can do this unless someone who has seen the other side too…I am proud of you and be the way you are….someone who reflects positive energy…God Bless
I am deeply appreciate it for your wonderful and sincere thoughts. Every single word you shared is exactly what I was looking for . May God Bless you!!
You are such a wonderful inspiration, Mihran and to know it comes from such a strong heart that has endured so much pain and devastation makes life so very much amazing. I truly congratulate you and look up to you.
Thank you kindly and deeply for your words and encouragements, May God Bless you with health, joy and success. It is an honor for me!
I admire your courage and congratulate you on coming out of this ordeal. Sending good wishes for continued health. You are an inspiration!!!
Thank you Barbara – I am touched and blessed by your words. May God Bless you and wish you the best health!
Sockdale..as you said it, he is really an inspiration! I know many of us are benefitting from his story in one way or the other.
What an ordeal you had to go through! I am so glad that you have fully recovered and even become a piano player.
May the road rise up to meet you.
May the wind be always at your back.
May the sun shine warm upon your face;
the rains fall soft upon your fields
and until we meet again,
may God hold you in the palm of His hand.
(traditional Gaelic blessing)
Karen – I bow to sincerely thank you for your precious words, I am beyond humbled and touched!
You’re an inspiration, not only in survival and strength, but in verse. I woke up to find that I had cancer 2 years ago this past July – it was quite an ordeal, though far less one than you endured, though I do know the struggles of fighting back and getting back. You’re a beautiful and unique human being – I think nearly everyone on WP would agree … that you were meant to be here, well and filled with the spirit that you share so much of with everyone. Much love & light to you for all that you shared, struggled through and had the strength to get through. <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 Kimberly
Thank you Kimberly for sharing your story, I feel with you completely – I am glad you are recovered and to start a fresh page. I wanted to share my story, because in the last few days I felt in pain and I cried, after finding that my best friends on WP begin to ignore me. As you know very well, I am a simple person, soft heart and I pledge always to respect everyone on WP. I am in good hopes to receive the same respect. We had many experiences in our life. when I share my story here, I feel second home, My best greetings to you and to everyone.
Thank you for sharing – it is difficult when it is about a time that was so painful – love and hugs. X
Thank you for your kind words and encouragement, It was very difficult and painful and I praise to God.
Mihrank, I gather you now play a piano. I guess, you would wish to play your piano with some songs of praise to God. It is just Food for thought.
To joykuse – I play the piano and music is my life. Playing songs of Praise to God, means al to me and my faith become stronger during my illness. May God Bless you and thank for your kind comments!!
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I think, and write, about those moments too. The days, months, seconds leading up to the precise instant life changed forever. And yet we are here now. As incredulous as our experiences may have been, what more can we ask for? Thank you for sharing. It helps.
Thank you Lorraine – I appreciate your wonderful thoughts – I see you had cancer experience and I was touched reading it. May God Bless you!!
Brave man-Blessings to you, always.
Wow Mihrank. You sure have had your trials. I see you were able to keep your sense of humor. (e.g. your text to your friend regarding the ambulance and the H&M bag 🙂 ). Keeping your ability to smile is important. Music/creativity is also another great form of therapy. A subject I hope to write about soon. Glad to hear you’re climbing mountains now. Take care my friend, Lorlinda
Wow, what an amazing story! I’m so glad you survived the ordeal and are well and can play the piano as beautifully as you do. Praise the Lord, indeed!!!! Blessings, Natalie 🙂
Also, I just listened to your interview on Kev’s Blog. I really think you should include some of those same kind of beautiful thoughts along with your music. The message is a powerful one and there are those who need to hear it. 🙂
Sending blessings of good health and peace to you…
Thank God you’re okay. There are some difficult journeys we go through in life…for me, it’s been my children’s hardships, which are as hard as your own, sometimes. I have a friend who went through a similar situation and is also a singer/songwriter/musician. I thought you’d be interested: http://www.amazon.com/Trusted-Go-Through-Becky-Wolford/dp/1593308302 She is also on Facebook and was just in Nashville recording a few days ago. All the best!
Hi Sherrie – I would like to extend my sincerest appreciation for your kind and warm thoughts. Here is my email address: kmihran@hotmail.com and I am looking forward to hearing from you friend in Nashville. Here is a link for my latest interview: http://kmihran.wordpress.com/2014/08/25/presenting-a-very-special-post-with-the-incredible-mihran-kalaydjian/
Have a blessed afternoon!
Well, apparently I’m still learning the ropes, as I just saw this…today! Wow. It may be a long time coming, but thanks for your response. I tried that link, but didn’t see how to connect.
You might enjoy my new blog: https://lessonsinperspective.wordpress.com/2015/05/08/hello-world/ Blessings on you as well!
Please allow me to thank you, I am touched with your words…May God Bless you..
And I in turn with yours…many blessings back.
wow – I am humbled and touched – I am inspired by your positive energy.
Reblogged this on Hadel and commented:
I am sorry, reading this late. A wonderful share and courageous, I am so glad you are here and living on with music. All the best in life for you.
Marhaba Hadal – This was the most painful years in my life. The pain was severe for long months and I was frightened not to survive. Music was my secret weapon when I was at the hospital. It was powerful to make me continue my life!
Salamtek …. Sometimes we get the hardship in life so we appreciate what we have and what we will have … you have a great gift… a blessing never lose that and pass it on to others who are ill. God Bless …. I love your music … have been enjoying it …
What a moving post! Thank you for teaching us about… LIFE, its strength, its diffuculties and its beauty… I’m so happy to read again the last words of your post: “but I’m fin now”. LOVE to you 🙂
Thank you for stopping by my blog and the like. I appreciate your support. Blessings to you that you are doing well. Thank God! Will follow.