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! 

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!

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.

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!

I came to Arizona for a craniotomy-- and I got gamma knifed.

Friday feels like so long ago, but it was only 2 days.
We got to the hospital at 5am for check-in. Good thing we aren't getting used to Arizona time, so that was like 8am for us.
They took me to pre-op for quick blood work and to start an IV. Then I was rolled through the GIGANTIC hospital to the gamma department. The nurses there were SO nice! One by one, the doctors all came in and explained the morning itinerary to me. At 7:30 the anesthesiologist came in and said he was going to put me to sleep so they can drill the frame to my head. The next thing I knew I was waking up at 7:43 with a frame on my head.  Me: "What time is it?" Nurse: "7:43" Me: "Is it still Friday?" Nurse: "Yes, it's still Friday." Me: "But am I still in Arizona?" Nurse: "haha, yepp" Me: "Ok, good. I like Arizona. It's hot here." And then I fell asleep. I woke up as I was being wheeled to get an MRI. I had to take off my glasses to get the frame on, so I couldn't really see and I was still super woozy from the anesthesia so it was just weird. All the nurses and MRI technicians were introducing themselves to me, but I just saw fuzzy people who all looked the same to me. I must have fallen asleep in the MRI because the next thing I remember was them bringing me to get an angiogram.
I made sure to introduce Abigail to the technicians and doctors at that point (my nurse kept calling her Abby; that was nice)
As I was getting positioned (having my caged head attached to the table) for the angiogram I made sure the doctors knew they were operating on me, not Abigail. They understood, and I drifted off into sedation.
The weirdest thing happened to me during the angiogram while I was sedated. Sedated implies that I am not under general anesthesia, but I am super relaxed that I'm in that limbo between delirious and asleep. All of a sudden as they were nearing the end of the angiogram, I realized where I was and what was happening and I could feel everything they were doing. They had locally numbed the point where they penetrated, but I felt everything around it. I forced myself to go to sleep because that was just too weird for me.
Next thing I knew, I was in the recovery room. All of my pre-tests were done, and the doctors were doing the hard part-- the planning. They have to plan exactly where to shoot the beams and at what level of radiation to ensure protection of the surrounding tissue and obliteration of the AVM. They spent a couple of hours planning this and checking and rechecking it. While they worked on that, I was in the recovery room, more and more aware of what was going on. I wasn't allowed to sit up because of my angiogram, so I was laying flat on my back and asked my mom to bring me my contacts from my bag-- I couldn't wear glasses because I had this frame on my head and it was driving me crazy that I couldn't see.
Laying flat on my back, I opened my contact case, opened my eyes and surprising to everyone in the room, including myself, I put my contacts in.
So, now that I could see, I was even more aware of what was going on. I went to brush my hand through my hair and realized, I couldn't feel my entire head!!
"I CAN'T FEEL MY HEAD!!!!" I freaked out that something was wrong.
Turns out, that was normal. They injected my head with a bunch of Novocain type anesthesia to be able to drill these 4 screws into my head without me feeling the pain while it was on my head for the day.
I can't even begin to explain how amazing the nurses were as they waited with my parents and me for the planning to be done.
The doctors came in at 1pm to tell me that the planning was complete and if all goes as planned they feel that there is a <1% chance that the AVM will survive the hit.
They took me to the gamma knife room and buckled my head cage to the table and turned on Pandora in the room so I can listen to music. The treatment lasted about a half hour and then the doctors came in and took literally a powerdrill to take the cage off my head.
The doctor came to talk to my parents and me after I was back in the recovery room. "Everything went perfectly as planned. In 1 year you will need an MRI to check on the AVM; it will most likely still be there. But in 2 years when you get an MRI it might be gone and by the 3rd year if its gone for 2 consecutive scans, we will do an angiogram to make sure it is in fact totally gone. We feel there is a <1% chance that the AVM will still be there after the 2nd year and definitely by the 3rd year it should be gone."
They gave me the paper work for discharging me and by 3 we were ready to leave.
The nurses told me I will have soreness on all of the puncture points for a week or so. I have to keep small circle bandaids on the puncture points on my forehead until they are totally gone; to prevent scaring. They said to take it easy for 2 weeks because that is the window of potential swelling. Other than that, I can go back to regular activity as if nothing ever happened.
This has been the craziest week of my life, but I am very pleased with how it turned out!!
Braink you all again for your outpour of support to me and my family during this weird time.

"Sometimes good things fall apart so better things can fall together." -Marilyn Monroe

We came to Arizona emotionally and mentally prepared for the craniotomy. After Dr. Spetzler reviewed my scans from Tuesday and called me with the update of: "No craniotomy. Let's do gamma knife instead" my stomach turned because of the horrible potential outcomes we had learned about gamma knife earlier this year when we were researching this option.
I knew I trusted Dr. Spetzler, but I also knew I didn't trust gamma knife. What a weird feeling.
Dr. Spetzler set up a consultation for me and Dr. Nakaji (the neurosurgeon/radiologist) to meet and discuss the gamma knife option first thing this morning.
We came armed with questions to interrogate the radio-surgeon with. Surprisingly, we didn't have to. The second Dr. Nakaji walked in the room we instantly, unanimously, felt a sigh of relief in the room. Dr. Nakaji was very knowledgeable and walked us through the newest findings of my AVM. He discussed why surgery is not really the best option anymore in light of the new scans-- the risks of surgery outweigh the risks of the gamma knife.
The biggest risk with the gamma knife was that the brain stem was really close to the AVM. If the brain stem got hit, it could be detrimental, and we wouldn't even know necessarily for up to 10 years. Based on my new scans, Dr. Nakaji and Dr. Spetzler can say almost definitely that the brain stem is miles away in term of radiation so the brain stem will not be touched at all.
Our next biggest concern was the waiting period to find a complication due to radiation spillover. Dr. Nakaji discussed our concerns with us at length. He explained that my AVM was small for the gamma knife scale, therefore, requiring a smaller dose of radiation. Because of the smaller dose, the spillover rate is not a big concern for the procedure. He said the wait to find out the success of the procedure would be an MRI once a year for the next 3 years (maximum) and after the 3rd year we do an angiogram to make sure it's gone.
Dr. Nakaji felt very confident that the gamma knife is the best option for my AVM. What is very unique about Dr. Nakaji and his opinion is that he is both as a neurosurgeon, as well as a gamma knife radiologist. So, he really has a grasp on which option would be best for each patient. He said without a doubt I would have less likelihood of complications with the gamma knife.
We asked, literally, every question we could think of; after and hour and a half of talking to the doctor, unanimously, we felt really comfortable with the gamma knife option, and with Dr. Nakaji administering the treatment.
He sent us to meet with his partner, Dr. McBride. She was just as pleasant as he was. She spoke to us at length, further explaining gamma knife and reiterating the low risks for my case.
While the gamma knife is seemingly a god sent, there is still one thing that troubles me still with it; I was looking forward to finishing surgery and knowing once and for all that the AVM is gone. With gamma knife, I will not know right away and am therefore still at risk of hemorrhaging until its totally obliterated.
Dr. Spetzler cleared all of the schedules of each doctor that would take part in my gamma knife procedure. So, once we were comfortable, the gamma knife was booked and ready for me for first thing tomorrow morning.
Tomorrow will be a long day. I get there at 5am, they bolt a cage type thing to my head and then I go for another angiogram. They use the angiogram along with the cage measurements on my head to accurately plan a radiation administration route. After the scans, I wait for the longest part--the planning. Dr. Nakaji, Dr. McBride and the rest of the gamma knife team assess the best approach with the radiation; the best level of radiation to administer to minimize spillover and maximize results; and the best way to protect surrounding tissue. Once they finish making all these decisions, and planning, they double and triple check their work. I then go into the gamma machine and lay down and they press a button which administers the radiation. I don't feel anything and I am awake for procedure. It will take about an hour, depending on the planning. After we finish I stay in the hospital for a few hours for observation and then back to the hotel. They feel it is unlikely for me, but the doctors say that within the first 24-48 hours I could have cerebellar swelling. If that happens, they would give me steroids and the swelling will go down. I am supposed to take it easy for 2 weeks after the surgery to make sure that there is no residual delayed swelling. After that, I can resume life as normal and wont worry about my AVM until next year for my MRI.
While this comes like a curveball to us, I think its for the best. I don't have to go through the lengthy recovery time and I don't run the risk of needing to re-learn to walk, again.
I am in the hands of the best doctors in the world for this... if that isn't comforting, I don't know what is.

Honey, I shrunk the AVM!!

So, I woke up this morning still sore from yesterday, but ready to go enjoy Sedona.
Sedona is about an hour away from the hotel we're staying at. We hit the road at about 10:30. At 10:52 my phone rings, it was a 602 area code so I knew it had to be someone from the hospital. I picked up, and it was Dr. Spetzler (my surgeon for my craniotomy) He told me that he reviewed my MRI from Monday and my angiogram pictures from yesterday. He explained that since my last scan (February 2012) my AVM has actually shrunk by nearly half. He said that based on the new scans, if he did the craniotomy as scheduled tomorrow, it is very likely that I will need intense therapy to re-learn to walk again. He said he would not put his wife or daughter through that so he does not feel comfortable doing that to me.
He then told me that gamma knife is a viable option for my AVM. This came as a complete shock for me because, first of all, I was mentally and emotionally ready for him to crack open my head and rid me of this AVM once and for all, but secondly, we have already visited and turned down the option of gamma knife earlier this year because of how risky it is and how close to the brain stem the AVM is.
Dr. Spetzler reassured me that the AVM has shrunk substantially since last year, and it shrunk away from the brain stem--so, that worry is no longer a worry; my brain stem will be totally safe. Dr. Spetzler told me to talk it over with my parents and neurologist and call him back on his cell if I want him to schedule my appointment for a consult with Dr. Nakaji (the gamma knife doctor) I tried to digest this 180° call... talked it over with my parents and called my neurologist.
After discussing the new findings with my parents we sat in mostly silence for the rest of our drive to Sedona. Our cell phones had no service as we drove through the mountains... not that it mattered, we were all looking out our windows thinking and absorbing the new fact that our cross country craniotomy adventure is now a potential cross country gamma knife adventure.
Sedona was beautiful, we took lots of pictures. But we had this big change in schedule clouding over us.
As we drove out of Sedona, and the service came back to our cell phones we were able to make phone calls again. I spoke to my neurologist who said he wanted to talk to Dr. Spetzler before he gave me any advice on the change in schedule. I called Rabbi Benny Fischer (a doctor referral service based out of Israel-- he told me about Dr. Spetzler a month ago) and then we waited. In silence. We waited for someone to give us guidance and tell us that this route, which we deemed the most dangerous approach, was in fact the right approach.
Finally, we got the call from my neurologist. He said that he spoke with Dr. Spetzler and due to this new information about the change in size and location of the AVM, they feel the gamma knife is my best option now.
I called Dr. Spetzler and gave him the go-ahead to cancel the surgery for tomorrow and set me up with a consultation for the gamma knife radiologist.
The good things bout the gamma knife are:
*Its non-invasive-- they put this helmet on me and shoot lasers into my brain and I get to leave the hospital a few hours later.
*There is no recovery time-- I can go immediately back to regular life.
*The brainstem isn't close enough to the AVM anymore to be considered at a dangerous proximity.
The downfalls to the gamma knife are:
*It's radiation-- its unforgiving. Anything goes wrong, its permanent.
*It isn't immediate. They will zap the AVM but it will take 6months-3years to know if it was even successful.
*We already spent the greater part of this last year convinced that gamma knife is not an option for me-- now we have to accept it in 24 hours.
We have the consult with Dr. Nakaji in the morning at 9:15 and we will drill him with all of our questions. Hopefully I will have good news to report tomorrow!
I guess its a blessing in disguise.... They don't need to cut open my head, and hopefully everything we feared about the gamma knife is a non-issue now with the up to date scans.