Tomorrow makes 1 year since gamma knife. CRAZY!!! How has it been a year, I feel like I was just in Arizona last month... My tan hasn't even faded!! (okay it has-- that was for dramatic effect)
So I went for my one year MRI check up yesterday. The doctor in Arizona had told me that the 1 year MRI was to make sure there's no swelling or lesions or bad things... But they don't expect to see any shrinkage until year two. Meanwhile, I just got the report from the neurologist.... Guess who's AVM is so ahead of its time that it SHRUNK!!!! (Btw the answer is me, in case that wasn't clear.)
Yayayayay my AVM shrunk!!! That means that the gamma knife is doing exactly what it was supposed to do and that I'm responding well to the treatment! No swelling, no lesions, no bad things, only shrinkage! Great day! It's not totally gone yet tho, I have to wait to hear back on the exact measurements of what's left; but who cares?? IT SHRUNK!!! So hopefully my brain continues to rock this and by my 2 year gammaversary I'll have even better news to share!!!
YAY Team!!!
Friday, April 25, 2014
Saturday, February 22, 2014
HAPPY TWO YEAR BRAINAVERSARY!!
Two years?? That's crazy! In some ways in feel like it's been 2 months and at the same time it feels like 10 years.
I know I've said it a lot throughout my posts but I really can't say it enough, I truly appreciate each and every one of you who has helped, guided and supported me along this journey.
Two years ago today it was a beautiful morning! February 23rd 7am and I went into the hospital wearing a t-shirt-- no jacket was required because it was so nice out! I thought that was a sign that the surgery would go beautifully and I would be home recovering in 72 hours, and never have to worry about an AVM again. Boy was I wrong.
After a 2 week stay in the hospital, 8 months of rigorous physical therapy and another surgery a little over a year later, here I am.
But even if I could, I would not change a thing about what happened two years ago.
Not being able to walk taught me so much about myself and my inner strength; it taught me how precious life is and how everything can change in one second; it taught me the importance of family and friends and how blessed I am to have such incredible people in my life. These last two years have taught me to never take anything for granted-- and for that newfound appreciation for life, I could not even dream of changing a thing about what happened.
So now for my update. It's been two years since my infarction and I am 100% back from that. It's crazy because while I know I'm 100% back, there are still things that amaze me that I'm able to do every day. Like, walking quickly through Times Square and weaving in and out of tourist pedestrian traffic; or, running up or down stairs without holding a banister; or, walking on the edge of the sidewalk like a balance beam; or, running across the street when the red hand stopped blinking and I have 2 seconds before oncoming traffic starts speeding towards me haha. It's incredible how far I have come.
I have been going for my routine check ups to my neurologist who is very pleased with my recovery from both the initial surgery as well as the gamma knife I had in April. I will need to go for a 1 year follow up MRI at the end of April to see if the gamma knife did what it was supposed to do-- so I guess that will be the next update.
Until then, thank you so much for all of your support-- there is no way I could be here without it!!!
HAPPY TWO YEAR BRAINAVERSARY, EVERYONE!!!
I know I've said it a lot throughout my posts but I really can't say it enough, I truly appreciate each and every one of you who has helped, guided and supported me along this journey.
Two years ago today it was a beautiful morning! February 23rd 7am and I went into the hospital wearing a t-shirt-- no jacket was required because it was so nice out! I thought that was a sign that the surgery would go beautifully and I would be home recovering in 72 hours, and never have to worry about an AVM again. Boy was I wrong.
After a 2 week stay in the hospital, 8 months of rigorous physical therapy and another surgery a little over a year later, here I am.
But even if I could, I would not change a thing about what happened two years ago.
Not being able to walk taught me so much about myself and my inner strength; it taught me how precious life is and how everything can change in one second; it taught me the importance of family and friends and how blessed I am to have such incredible people in my life. These last two years have taught me to never take anything for granted-- and for that newfound appreciation for life, I could not even dream of changing a thing about what happened.
So now for my update. It's been two years since my infarction and I am 100% back from that. It's crazy because while I know I'm 100% back, there are still things that amaze me that I'm able to do every day. Like, walking quickly through Times Square and weaving in and out of tourist pedestrian traffic; or, running up or down stairs without holding a banister; or, walking on the edge of the sidewalk like a balance beam; or, running across the street when the red hand stopped blinking and I have 2 seconds before oncoming traffic starts speeding towards me haha. It's incredible how far I have come.
I have been going for my routine check ups to my neurologist who is very pleased with my recovery from both the initial surgery as well as the gamma knife I had in April. I will need to go for a 1 year follow up MRI at the end of April to see if the gamma knife did what it was supposed to do-- so I guess that will be the next update.
Until then, thank you so much for all of your support-- there is no way I could be here without it!!!
HAPPY TWO YEAR BRAINAVERSARY, EVERYONE!!!
Sunday, September 8, 2013
"The greater the obstacle, the more glory in overcoming it." Moliere
WOW. What a day. One year ago this week, I graduated physical therapy. I knew I set the bar high when I said I wanted to complete a 5K. I never thought I would actually see the day when I could. I was still using a cane at night when I was tired, I was still unsteady when the lights were out... I hoped and prayed for a full recovery but a year ago, I was still waiting.
November 17, 2011 I will never forget that day-- I was diagnosed with an AVM at 10:30 at night.
February 23, 2012 is a date that will forever be branded in my mind-- that was the date of my first brain surgery. That was the date of the complication.
March 8, 2012 is a date that will forever be special to me-- that was the day I finally got discharged from the hospital after my two week stay.
April 24, 2012 was the date that I went an entire day without using my walker (even at night) for the first time-- I only needed my cane.
September 4, 2012 I finally was at a point where physical therapy could do no more for me and I was on my own for finishing my unrealistic 100% recovery.
April 26, 2013 was my (hopefully) last brain surgery.
Now I can add September 8, 2013. The day I achieved my seemingly impossible goal.
I still feel like it was a dream. I'm sure in the last year I did walk 3.1 miles (5K) at some point... but to be in a 5K official race, surrounded by friends and family who have supported me all this way... just seemed so distant to me, like it could never happen because the doctors said it couldn't. I keep thinking back to when the Doctor showed me and my parents the scan of my brain, showing us where the infarction was... they said if I recovered to 70-80% I should consider myself lucky. A huge part of my cerebellum essentially died and I would not be able to get back to my old self. Now here I am, September 8, 2013, I still have my walker in my room (as a coat rack), and here I am, participating in a 5K. How surreal.
My team was called The Brain-iacs. I had shirts made up for us that said our team name on the front and "Becau5e I Kan" on the back (lined up appropriately to say 5K). That is the very literal answer I would give people who asked why I wanted to do the Color Run... Why?? Because I can! I am no longer handicapped. I am no longer less than 100% of myself. I am no longer suffering debilitating headaches. I can do a 5K. Because I can. And I WILL!
My team was five of my close friends and my two favorite sisters. My parents waited at finish line for us and off we went. At every kilometer they threw powder paint at us-- it was awesome! I had so much fun talking and laughing with all of my teammates in between stations and then through the stations we had a blast making sure no one came out with any white left on their shirts.
We walked for part of the 5K and jogged/ran for part of the 5K. But when we were approaching the finish line, it was very important to me that I run-- so I did, followed by my entire team, RUNNING! We all ran for the last part of the 5K right through the finish line where people were throwing paint on each other. I was so overcome with emotion, I was proud, shocked, thankful, overwhelmed, humbled, along with 1000 other feelings I cannot even begin to describe. I couldn't handle all of these racing (no pun intended) emotions, so I started crying. I cried as I ran through the finish line, as I hugged each team member, thanking them for being there with me. The whole thing was just so... surreal.
I still can't believe it actually happened. I proved the neurosurgeons, neurologists, nurses, doctors and therapists wrong. I RAN in a 5K!! I made more than 100% recovery... I am at 110% and for that, will always remember, September 8, 2013.
From the bottom of my heart I thank each of you for your constant support since the initial diagnosis in 2011. My strength is fueled by your support and I can never adequately thank you all for believing in me!!
November 17, 2011 I will never forget that day-- I was diagnosed with an AVM at 10:30 at night.
February 23, 2012 is a date that will forever be branded in my mind-- that was the date of my first brain surgery. That was the date of the complication.
March 8, 2012 is a date that will forever be special to me-- that was the day I finally got discharged from the hospital after my two week stay.
April 24, 2012 was the date that I went an entire day without using my walker (even at night) for the first time-- I only needed my cane.
September 4, 2012 I finally was at a point where physical therapy could do no more for me and I was on my own for finishing my unrealistic 100% recovery.
April 26, 2013 was my (hopefully) last brain surgery.
Now I can add September 8, 2013. The day I achieved my seemingly impossible goal.
I still feel like it was a dream. I'm sure in the last year I did walk 3.1 miles (5K) at some point... but to be in a 5K official race, surrounded by friends and family who have supported me all this way... just seemed so distant to me, like it could never happen because the doctors said it couldn't. I keep thinking back to when the Doctor showed me and my parents the scan of my brain, showing us where the infarction was... they said if I recovered to 70-80% I should consider myself lucky. A huge part of my cerebellum essentially died and I would not be able to get back to my old self. Now here I am, September 8, 2013, I still have my walker in my room (as a coat rack), and here I am, participating in a 5K. How surreal.
My team was called The Brain-iacs. I had shirts made up for us that said our team name on the front and "Becau5e I Kan" on the back (lined up appropriately to say 5K). That is the very literal answer I would give people who asked why I wanted to do the Color Run... Why?? Because I can! I am no longer handicapped. I am no longer less than 100% of myself. I am no longer suffering debilitating headaches. I can do a 5K. Because I can. And I WILL!
My team was five of my close friends and my two favorite sisters. My parents waited at finish line for us and off we went. At every kilometer they threw powder paint at us-- it was awesome! I had so much fun talking and laughing with all of my teammates in between stations and then through the stations we had a blast making sure no one came out with any white left on their shirts.
We walked for part of the 5K and jogged/ran for part of the 5K. But when we were approaching the finish line, it was very important to me that I run-- so I did, followed by my entire team, RUNNING! We all ran for the last part of the 5K right through the finish line where people were throwing paint on each other. I was so overcome with emotion, I was proud, shocked, thankful, overwhelmed, humbled, along with 1000 other feelings I cannot even begin to describe. I couldn't handle all of these racing (no pun intended) emotions, so I started crying. I cried as I ran through the finish line, as I hugged each team member, thanking them for being there with me. The whole thing was just so... surreal.
I still can't believe it actually happened. I proved the neurosurgeons, neurologists, nurses, doctors and therapists wrong. I RAN in a 5K!! I made more than 100% recovery... I am at 110% and for that, will always remember, September 8, 2013.
From the bottom of my heart I thank each of you for your constant support since the initial diagnosis in 2011. My strength is fueled by your support and I can never adequately thank you all for believing in me!!
Sunday, August 4, 2013
Braink you very much, but I gotta run!
Recap: In February 2012 I had my first brain surgery. There was a complication during the surgery and left me unable to walk/balance. I was in intense physical therapy in the hospital for 2 weeks, followed by intense home care therapy for a month until I was stable enough on my walker to graduate to out patient physical therapy.
On the first day of out patient physical therapy, my therapist was performing basic tests on me to see my ability to do basic standing and balancing. She asked me and my mom what are goals were for physical therapy (expecting "being off a walker and on a cane some of the time" to be a goal.) my mom said her goal for me was that I should walk down my college graduation aisle unassisted. My goal was that I should complete/run in a 5k race. Both goals seemed so far fetched and unrealistic....
Well, my mom got her wish.
Now it's my turn.
On September 8th, 2013-- 35 days from now-- I will be running in The Color Run 5K.
I want to have a team of people who have supported me until now, support me on the day of the race. I am opening the invite to all of my friends and family to join me in the race. You don't have to be in shape to participate. As their website says, "you can walk, run, crawl, or cartwheel to the finish."
I am very excited to announce that I am cleared from all of my doctors and I am finally physically able to complete my goal.
If you would like to join my team, please let me know BY THE END OF THE WEEK please! I have to make a team reservation and everyone needs to pay for their personal reservation ASAP.
A few things to note:
•The race is in Brooklyn, NY at 9 am on a Sunday morning.
•The race is on September 8th-- which is tzom gedaliah this year.
• The race is raising money for the children's cancer foundation.
Lastly, I need a team name. Because it's the color run, many team names have to do with colors and rainbows type of things. People who are running for a cause usually incorporate their cause in the name. Keeping these two in mind, I complied a list of potential names with a few friends. If you would like to participate please give me your input on our team name (in no specific order):
Is brain a color?
If we only had a brain
Colors of the brainbows
Feel the brainbow, taste the rainbow.
Proving a point.
Cerebellum felon
Brain-iacs
Walker-less runners
Color me brain.
Brain like the wind
Somewhere over the brainbow.
The running brainbow
You tell me it's not possible.
Please call, text, message or email me if you would like to join my team and give me your input on the name!!
Thank you all for your continued support I could never be here without you!
Wednesday, June 26, 2013
Happy 2 month gammiversary!!
Two months but it feels like a distant memory.
About two weeks ago I saw my neurologist and my dermatologist.
My neurologist gave me the green light to do whatever I want to do-- no restrictions. He wants to see me in 6 weeks just to keep an eye on me because I have such an unusual case. The dermatologist gave me the go ahead to finally take off my ridiculous circle bandaids on my face.
The dermatologist gave me zinc oxide to put on my circles so my dots dont scar and I am hoping that my tan lines from the bandaids will fade soon so I won't have pale circles on my face.
I tried to straighten my hair during this last month.. But my back two punctures on the back on my head were still sore and it hurt. But now, for my two month gammiversary I am excited to say that for the last 2 days I was able to straighten my hair without any discomfort!
Pale circle tan marks on my face aside, it's been two months and I've never felt better!
I worked at camp last summer but I had limitations. I couldn't run in the grass with the kids and I left twice a week for PT. Now it's been a year and I'm back in camp with no limitations and I can run around with my kiddies!! It feels great!
About two weeks ago I saw my neurologist and my dermatologist.
My neurologist gave me the green light to do whatever I want to do-- no restrictions. He wants to see me in 6 weeks just to keep an eye on me because I have such an unusual case. The dermatologist gave me the go ahead to finally take off my ridiculous circle bandaids on my face.
The dermatologist gave me zinc oxide to put on my circles so my dots dont scar and I am hoping that my tan lines from the bandaids will fade soon so I won't have pale circles on my face.
I tried to straighten my hair during this last month.. But my back two punctures on the back on my head were still sore and it hurt. But now, for my two month gammiversary I am excited to say that for the last 2 days I was able to straighten my hair without any discomfort!
Pale circle tan marks on my face aside, it's been two months and I've never felt better!
I worked at camp last summer but I had limitations. I couldn't run in the grass with the kids and I left twice a week for PT. Now it's been a year and I'm back in camp with no limitations and I can run around with my kiddies!! It feels great!
Sunday, May 26, 2013
1 month gammiversary already?!?!
Where did this month go?!?!
For the most part, recovery has been nothing but smooth. My puncture points are healing nicely and almost totally gone. I still wear bandaids on my face but only when I'm going outside into the sun. (If I'm inside for the night, I can take them off) They don't hurt to touch anymore-- but when I press they do still bother me... but it does take longer for bruised bone to heal.
I started easing back into work last week and this week will be my first full week back (except that tomorrow is a national day off-- Thank you to everyone who has and is fighting for our country!!)
I have a follow up appointment with my neurologist next week to make sure that everything is still neurologically sound with me, and then the next milestone will be 11 months from today when I get my first post-gamma MRI.
It has been an incredible month not worrying about my AVM for the first time since November 2011. And I am so thankful to everyone who helped me through.
For the most part, recovery has been nothing but smooth. My puncture points are healing nicely and almost totally gone. I still wear bandaids on my face but only when I'm going outside into the sun. (If I'm inside for the night, I can take them off) They don't hurt to touch anymore-- but when I press they do still bother me... but it does take longer for bruised bone to heal.
I started easing back into work last week and this week will be my first full week back (except that tomorrow is a national day off-- Thank you to everyone who has and is fighting for our country!!)
I have a follow up appointment with my neurologist next week to make sure that everything is still neurologically sound with me, and then the next milestone will be 11 months from today when I get my first post-gamma MRI.
It has been an incredible month not worrying about my AVM for the first time since November 2011. And I am so thankful to everyone who helped me through.
Friday, May 3, 2013
Happy 1 week gammiversary!
So, it's been one week since gamma knife!
The amount of support and love sent to me and my family has been unbelievably incredible!
Braink you so much from the bottom of my heart (bottom of my brain?) for everything each of you have done for us!
As for my update.
I have been wearing 2 circle bandaids on my face where the punctures were in my forehead to bolt the head cage on. I have to wear the bandaids until the punctures are totally healed to reduce the chance of scarring and infection. I change the bandaids 3 times a day and each time I change it I see a huge improvement in the healing of the punctures. I also have two puncture wounds in the back of my head. Those are annoying. I feel like a new mother because I cant sleep through the night. Every time I roll over in my sleep it wakes me up in pain. So I haven't had a good night sleep all week.
Other than that, I have to take it easy still. I am still in the two week window of potential residual swelling. I get tired more frequently because of the combination not sleeping well at night and the anesthesia in my system.
I do feel a huge weight has been lifted off my shoulders since the procedure; even though we wont know for sure that it's gone for up to 3 years. I can't wait until these two weeks are up and I can return to my life as normal-- without having the fear of an AVM hanging over my head.
I have an appointment with my neurologist on Monday. He just wants to check out my punctures and just see how I am doing. Other than that, my next brain appointment should be in a year for an MRI.
So, here are the top comments I have received this week about my bandaids:
* Got your horns removed?
* Target practice gone wrong?
* Quitting smoking?
* I can only imagine what the other guy looks like!
My 2 responses:
* I had brain surgery on Friday. (Let them wonder why I have only two bandaids for brain surgery...)
* Last time I use groupon for botox...
Braink you again!
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