When I was growing up "Taco Night" was always cause for excitement. I firmly believed my parents made the best tacos in the world and was incredibly deflated when I grew up and realized the recipe consists of prepackaged envelopes and cans! It still tasted amazing, but now I knew they were not unique to only our family. I no longer eat that pound of ground up cow saturated in fat and Lawry's taco seasonings, but I have come up with a really yummy and healthy taco that I want to share with you all... because I love you that much...
Olivia's Tacos
canola oil
1/2 cup Chopped onion
heaping tablespoon minced garlic
2 chopped bell peppers (2 different colors, any combo)
1 package soyrizo
whole wheat tortillas
Simply heat oil, onion and garlic in a skillet and saute until fragrant. Add bell peppers and soyrizo, cover with lid, and cook on medium-low for about 30 minutes, stirring often. When the bell peppers are bright but soft, and the soyrizo is dark brown, it is ready! Serve up on warm whole wheat tortillas and top with:
Really Simple Guacamole
4 avocados
1 tomato
tablespoon minced garlic
juice of 2 limes
2 minced jalapeno
(optional) pour in a little of your favorite salsa!
Put all ingredients in food processor and process until smooth, add a heaping dollop to your tacos and enjoy! I generally serve this all with baked zucchini chips that have been tossed with olive oil, sea salt and McGrill Mates Montreal Seasoning and baked at 350 until crispy!
Enjoy, and if you make them come back and tell me how much you love them!
Thursday, April 30, 2009
Tuesday, April 28, 2009
NF2 on House
When I sit down on Monday nights to watch House I expect to be mildly insulted and wickedly entertained. Unfortunately last night I was just shocked by the amount of ignorance spread by the writer's of the show. The episode centered around a young deaf wrestler who falls to the ground with exploding sensations in his head. After a bit of investigating he is diagnosed with "NF2 cancer" and told treatment would be relatively simple, and that afterward he may regain his hearing which he lost at age 4. Throughout the show the boy is referred to as an idiot and insulted repeatedly for being a well adjusted deaf child. At one point during a simple brain biopsy House directs Chase to put in a Cochlear Implant, without any planning or a specialist. It was actually hilarious. The boy wakes up and House is in his hospital room tuning his CI as he begins to awaken. He can immediately hear the tiniest of sounds, and within hours is asking if his speech sounds slurred as he hears his deaf girlfriend for the first time. He looks at her pitifully as she walks away. House is excused from forcing this contraption onto an unwilling patient because he "did the idiot a favor" by providing him with hearing. I expect that sort of belligerence from House, but even the other characters mirrored his viewpoint. The deaf boy was called an idiot and a moron repeatedly, and at the end when he is touched to hear his name on his Mother's voice he accepts his new gift and all is supposedly well.
I can deal with the fact that House is a fictional show, and not known for medical accuracy. How can they disregard the potential ignorance they are spreading about NF2 though? I do not have cancer, now all of my friends who watch House are probably thinking oh lord she has cancer! Should I be expecting muffin baskets? (Probably not.) When you are deafened by NF2 removing the tumors does not bring your hearing back, and may in fact also cause facial paralysis and disequilibrium. So aside from the general ignorance of NF2, the attack on Deaf Culture was nothing short of hurtful. There were not a handful of tongue in cheek remarks, the episode was a nonstop diatribe about the stupidity of Deaf people to stay hearing impaired when there are supposedly magical implants that can fix anyone. These implants rarely work on people with NF2, and I already deal with people on a daily basis who treat me with disdain and contempt, as though it's my own fault I am deaf. Thank you House for further increasing the misconceptions of deaf people, and causing all of us Deaf to turn off our TVs feeling like we just got beat up in gym class. For a show that generates millions of dollars in profit, you would think they could afford a medical fact checker, or at least a writer with enough common sense to write a witty joke without being bigoted toward an entire culture of people. The show had a chance to be a platform for the deaf, and instead reminded most of us exactly why many Deaf don't want anything to do with the hearing world.
I can deal with the fact that House is a fictional show, and not known for medical accuracy. How can they disregard the potential ignorance they are spreading about NF2 though? I do not have cancer, now all of my friends who watch House are probably thinking oh lord she has cancer! Should I be expecting muffin baskets? (Probably not.) When you are deafened by NF2 removing the tumors does not bring your hearing back, and may in fact also cause facial paralysis and disequilibrium. So aside from the general ignorance of NF2, the attack on Deaf Culture was nothing short of hurtful. There were not a handful of tongue in cheek remarks, the episode was a nonstop diatribe about the stupidity of Deaf people to stay hearing impaired when there are supposedly magical implants that can fix anyone. These implants rarely work on people with NF2, and I already deal with people on a daily basis who treat me with disdain and contempt, as though it's my own fault I am deaf. Thank you House for further increasing the misconceptions of deaf people, and causing all of us Deaf to turn off our TVs feeling like we just got beat up in gym class. For a show that generates millions of dollars in profit, you would think they could afford a medical fact checker, or at least a writer with enough common sense to write a witty joke without being bigoted toward an entire culture of people. The show had a chance to be a platform for the deaf, and instead reminded most of us exactly why many Deaf don't want anything to do with the hearing world.
Monday, April 27, 2009
Abuse is an Addiction
As a young adult I mixed myself up with the wrong people. It was one thing to party, but the situations I was in at the time are so insane that even now they feel like a far away dream, or nightmare. I try my hardest to pretend they don't exist, but on occassion my bubble gets popped and I am forced to face the reality I created. My oldest son JT saved my life. The day I found out I was pregnant with him I completely cleaned up. No more partying, I wanted to go back to school and work. I assumed his sperm donor would feel the same, but unfortunately I was wrong. To this day I cannot comprehend how someone can create a child and not immediately fall in love with the tiny bump under a belly button. Several months into my pregnancy Bobert * started getting incredibly aggressive with me. He was on meth and had a lot of hallucinations and ideas that were not based in reality. The first time he hit me I was driving us home from Taco Bell and refused to stop at his friends' house where I knew there would be drugs. He grabbed the wheel and made us swerve, so I quickly pulled over and took out the keys. He grabbed a burrito and with it in his hand slapped me across the mouth. The beans splattered allover my car and my face, and before anger could register he was twisting my keys out of my hands and screaming in my face "I'm robbing you bitch." He ran off with my purse and my keys, leaving me crying parked and abandoned on the side of the road.
Why didn't I leave then? Why didn't I call my parents and never look back? Abuse is an addiction, I can't explain it. I felt sorry for Bobert, as though society had somehow done this to him, and I was the only one who could fix him. He was a manic depressive and bi-polar, his mother bought drugs from him, his sister lived with a drug dealer and his brother in law was a crackhead. I don't know how I didn't see what was coming...
The violence escalated over the coming months. At one point during an argument he choked me with my purse strap, lifting my feet off the floor and dropping me down clutching my pregnant belly in a hysterical pile of tears. He would pinch me when we were in public and he was not happy. He pushed me into walls, twisted my hands and fingers, and everytime he would beg for forgiveness. I began waking up to a bunch of his friends in our living room smoking meth at 4 am, I would tell everyone to get the hell out, and they would laugh at me. Othertimes I would wake up and my car would be gone, I would have no idea where Bobert was or what he was doing in my car. My Father gave me the car and had made Bobert swear he wouldn't drive it, but he was so ridiculously selfish, and never kept a promise. I began sleeping with my keys in my hands, half sleeping really, terrified at any moment he would go into a fit and throw me or break something important to me. We were once driving to the store, he saw 2 of his friends walking along and pulled over for them. I didn't like these friends and asked him to keep driving, he opened the door and forcefully pushed me out, then drove around me in circles taunting me as I cried. I sat on a curb in my swap meet maternity clothes looking down at my worn down sandals and just watched my tears pool into a pathetic tiny river. A couple of weeks later I was laying down in our room and another one of his friends walked in. Knowing how incredibly jealous and possesive Bobert was I got up and tried to walk out, right then Bobert walked in. He pushed his friend out of the room and locked the door, then looked right at me. Fear seized my heart, the look on his face, I knew he was out of his mind. He ran at me and threw me into the wall, then onto the bed. He folded the mattress over me and got on top and was suffocating me with our mattress. It wasn't specifically painful and would never leave a bruise, but I couldn't breathe and started to hyperventilate, it was terrifying. I started screaming and crying, and suddenly another one of his friends busted the door in and pulled him off of me. When Bobert turned his head I grabbed my keys and ran as fast as I could out the door. He was right behind me and I still remember running as fast as I could, 7 months pregnant, down those steep concrete steps, tears blurring my vision as I prayed he wouldn't reach me in time to push me down and hurt my baby. My car was parked directly beneath us, I jumped in and locked the doors just as he tried to pull the handle. He was enraged, banging on the window and suddenly ripped my side view mirror clear off the car, tearing a gash in his hand. He flicked the blood at my car and laughed as I cried helplessly against the steering wheel. Another one of his friends kept begging me to come back, but I drove off, so afraid he would find a way to follow me. My heart beat in my throat as I drove around in circles and hours later I came back. By then he was calm as I knew he would be, and I calmly told him if this didn't stop, I would leave. It was the first sighting of my real self I had seen in a year. I was calm, and there were no tears. I simply told him... I am only with you because I want my son to have his Father, but he doesn't need violence in his life. If you don't stop, I will leave, do not doubt me. He told me if I left he would kill me. A week later while Bobert was at his Mom's I grabbed what I could and ran to my car, I knew if he came back while I was leaving there would be hell to pay. Miraculously there was no confrontation, he was out for several hours, and I remember to this day when I pulled onto the freeway entrance headed for my Dad's, I felt a new strength and resolve. I knew I would not go back this time, and I didn't.
... to be continued, this is getting too long but there is much more...
*Name changed for privacy.
Why didn't I leave then? Why didn't I call my parents and never look back? Abuse is an addiction, I can't explain it. I felt sorry for Bobert, as though society had somehow done this to him, and I was the only one who could fix him. He was a manic depressive and bi-polar, his mother bought drugs from him, his sister lived with a drug dealer and his brother in law was a crackhead. I don't know how I didn't see what was coming...
The violence escalated over the coming months. At one point during an argument he choked me with my purse strap, lifting my feet off the floor and dropping me down clutching my pregnant belly in a hysterical pile of tears. He would pinch me when we were in public and he was not happy. He pushed me into walls, twisted my hands and fingers, and everytime he would beg for forgiveness. I began waking up to a bunch of his friends in our living room smoking meth at 4 am, I would tell everyone to get the hell out, and they would laugh at me. Othertimes I would wake up and my car would be gone, I would have no idea where Bobert was or what he was doing in my car. My Father gave me the car and had made Bobert swear he wouldn't drive it, but he was so ridiculously selfish, and never kept a promise. I began sleeping with my keys in my hands, half sleeping really, terrified at any moment he would go into a fit and throw me or break something important to me. We were once driving to the store, he saw 2 of his friends walking along and pulled over for them. I didn't like these friends and asked him to keep driving, he opened the door and forcefully pushed me out, then drove around me in circles taunting me as I cried. I sat on a curb in my swap meet maternity clothes looking down at my worn down sandals and just watched my tears pool into a pathetic tiny river. A couple of weeks later I was laying down in our room and another one of his friends walked in. Knowing how incredibly jealous and possesive Bobert was I got up and tried to walk out, right then Bobert walked in. He pushed his friend out of the room and locked the door, then looked right at me. Fear seized my heart, the look on his face, I knew he was out of his mind. He ran at me and threw me into the wall, then onto the bed. He folded the mattress over me and got on top and was suffocating me with our mattress. It wasn't specifically painful and would never leave a bruise, but I couldn't breathe and started to hyperventilate, it was terrifying. I started screaming and crying, and suddenly another one of his friends busted the door in and pulled him off of me. When Bobert turned his head I grabbed my keys and ran as fast as I could out the door. He was right behind me and I still remember running as fast as I could, 7 months pregnant, down those steep concrete steps, tears blurring my vision as I prayed he wouldn't reach me in time to push me down and hurt my baby. My car was parked directly beneath us, I jumped in and locked the doors just as he tried to pull the handle. He was enraged, banging on the window and suddenly ripped my side view mirror clear off the car, tearing a gash in his hand. He flicked the blood at my car and laughed as I cried helplessly against the steering wheel. Another one of his friends kept begging me to come back, but I drove off, so afraid he would find a way to follow me. My heart beat in my throat as I drove around in circles and hours later I came back. By then he was calm as I knew he would be, and I calmly told him if this didn't stop, I would leave. It was the first sighting of my real self I had seen in a year. I was calm, and there were no tears. I simply told him... I am only with you because I want my son to have his Father, but he doesn't need violence in his life. If you don't stop, I will leave, do not doubt me. He told me if I left he would kill me. A week later while Bobert was at his Mom's I grabbed what I could and ran to my car, I knew if he came back while I was leaving there would be hell to pay. Miraculously there was no confrontation, he was out for several hours, and I remember to this day when I pulled onto the freeway entrance headed for my Dad's, I felt a new strength and resolve. I knew I would not go back this time, and I didn't.
... to be continued, this is getting too long but there is much more...
*Name changed for privacy.
Friday, April 24, 2009
Wednesday, April 22, 2009
It's all about the Family
JT just keeps getting into more and more trouble at school. I've explained that little boys who don't behave in class never get into college and end up homeless. I have spanked his butt red. I have put Xbox into a box and given him a toothbrush to scrub the floor. I don't know if I should be proud he is so strong-willed or angry he cannot control his impulses. Currently JT is grounded from living... well we allow him to breathe and read, but that is it. Our 50" flatscreen (had to drop the shout out) has been curiously dark since the last bout of punishment. Over the subsequent week an odd thing has happened... we got used to it! With the TV off the kids have discovered they own several boardgames, wrestled around with our chihuahua as much as safely possible, and drawn intricate tribal designs (or so I assume) with sidewalk chalk on our patio. We went for a family swim today and JT has told me he wants to start running with me! Tonight at our 3rd dinner at the table of this week I announced that from now on all dinners would be at the table. After some discussion we have made several changes to our family:
The TV is no longer on without specific permission, and there will be absolutley no TV in the morning, and until all chores, homework, dinner, and showers are completed nightly.
Tuesday night is Family Game Night! No TV at all, with board games after dinner.
Friday night is Family Movie Night, the one night of the week we will eat in front of the TV, with a family movie.
Eating out will be limited to one night a week, either Saturday or Sunday depending on our schedule.
I feel refreshed and look forward to implementing our new schedule. I see my children appreciating our time spent together, and recognizing that family always has priority. Maybe that was a lesson Paul and I needed to learn as well, and I can only hope we will be rewarded with well behaved and grateful children.
Now if only I can convince Paul to stop eating meat! Paul would say if only now Olivia would get off the computer... oops....
Thursday, April 16, 2009
Top 10 People I Hate at the Gym
1. The guy with the veins popping out of his neck who gets off the machine and just walks away, leaving his steroid-infested man stanky sweat in puddles on the seat. You know you are supposed to wipe that up, keep your ring worm to yourself nasty!
2. Chick on the stairmaster with hair fully styled and not at all in a ponytail... if you were actually working out you would want your hair up. Stop posing on all the equipment and get the hell out of my way before I break your nails.
3. Personal trainer who you specifically tell you want to learn the resistance machines, and then creates a "routine" for you using nothing but free weights and trainer tools in the hopes of forcing you to pay for more personal sessions. Right, because not listening is the best way to get repeat customers.
4. Weird little old dude who sits across from you, and you can feel his creepy old ass eye-molesting you while you press. Oddly, he doesn't do anything but sit on random machines!
5. Girl who floats in on her implants... in any other situation I don't care, but how the hell am I supposed to focus and sweat when you freaking cheat your way to a perfect body then come in here acting like you bench pressed those things out of your pecs??
6. Bad ass bebe kid trying to hit my innocent child in the daycare and teach him bad words. What is your problem? Why are you so angry? I know it smells like feet in here, and your Mom is off flirting with weird little old dude, but damn suck it up and leave my baby alone!
7. Person with a blue tooth on while working out... you are not that important and none of us are fooled. If you had such a demanding job why is your ass at the gym on a Monday morning? So not only are you unemployed, you go to the gym and pretend to work out, because sweat would completely ruin that fugly thing you've hot glued to your ear. God help you if its bedazzled.
8. 16 year old sitting on a machine text messaging, how did you get a membership? Don't they have age requirements here? Shouldn't you be in the daycare waiting for your Mom? Get the hell off the machine, just because their isn't a line doesn't mean I'm not waiting for it to open up from across the room. We all know your generation can't be expected to understand actual human relations, so go home and google some Tae Bo on You Tube and frigging get out of my way.
9. Old tiny asian lady with the huge bush walking around naked in the locker room. Cover your muff, it's scaring me.
10. Girl in jeans and makeup on the sit up machine, are you really that broke or just tacky? I'm guessing tacky since you could afford the membership. Or maybe this is a free trial which would explain why I probably will never see you here again, so get out of my way.
*Weird deaf girl who sits in judgement of everyone and never moves when you say excuse me!*
2. Chick on the stairmaster with hair fully styled and not at all in a ponytail... if you were actually working out you would want your hair up. Stop posing on all the equipment and get the hell out of my way before I break your nails.
3. Personal trainer who you specifically tell you want to learn the resistance machines, and then creates a "routine" for you using nothing but free weights and trainer tools in the hopes of forcing you to pay for more personal sessions. Right, because not listening is the best way to get repeat customers.
4. Weird little old dude who sits across from you, and you can feel his creepy old ass eye-molesting you while you press. Oddly, he doesn't do anything but sit on random machines!
5. Girl who floats in on her implants... in any other situation I don't care, but how the hell am I supposed to focus and sweat when you freaking cheat your way to a perfect body then come in here acting like you bench pressed those things out of your pecs??
6. Bad ass bebe kid trying to hit my innocent child in the daycare and teach him bad words. What is your problem? Why are you so angry? I know it smells like feet in here, and your Mom is off flirting with weird little old dude, but damn suck it up and leave my baby alone!
7. Person with a blue tooth on while working out... you are not that important and none of us are fooled. If you had such a demanding job why is your ass at the gym on a Monday morning? So not only are you unemployed, you go to the gym and pretend to work out, because sweat would completely ruin that fugly thing you've hot glued to your ear. God help you if its bedazzled.
8. 16 year old sitting on a machine text messaging, how did you get a membership? Don't they have age requirements here? Shouldn't you be in the daycare waiting for your Mom? Get the hell off the machine, just because their isn't a line doesn't mean I'm not waiting for it to open up from across the room. We all know your generation can't be expected to understand actual human relations, so go home and google some Tae Bo on You Tube and frigging get out of my way.
9. Old tiny asian lady with the huge bush walking around naked in the locker room. Cover your muff, it's scaring me.
10. Girl in jeans and makeup on the sit up machine, are you really that broke or just tacky? I'm guessing tacky since you could afford the membership. Or maybe this is a free trial which would explain why I probably will never see you here again, so get out of my way.
*Weird deaf girl who sits in judgement of everyone and never moves when you say excuse me!*
Monday, April 13, 2009
Mixology
I stepped out of my warm cozy condo into the crisp air this morning and jogged my way to the front of the complex. My legs felt heavy, but I pushed forward, playing out my mile splits in my head. Running towards the mountains and focusing on hill training kept my mind absorbed until I hit the running trail and had a 4 mile flat segment to cover. My thoughts kept bouncing around, finally landing on an old song that sounds slightly off tune in my head. After having been deaf for 6 years, I am stuck replaying the same mix tape to myself repeatedly. Like a summer hit that makes you change the station by Christmas, but there is nothing else to hear. Alanis, Aaliyah, Britney... The Doors, Joplin, Creedence... my old favorites are on constant rotation. The trail seemed to stretch before me for an eternity, droplets of sweat beaded along my hair as my breath quickened. Running can just be so boring without any external entertainment! So as I passed Archibald and felt my muscles warm up, I cleared my throat and started singing out loud. My pace matched the beat as I belted out Gloria by the Doors in my best warbled Jim Morrison impression. Suddenly a smile caught my lips and the path began to pass by more quickly. I repressed the urge to stop and do a dork dance as I belted out Waterfalls by TLC and rapped Left Eye's part with a bounce in my step. As I waited for traffic to pass at a light I started into a heartwrenching performance of You Oughta Know, only slightly lowering my volume when passed by a few kids on bikes. The final steep descent to the top of Day Creek inspired a bit of I Believe I Can Fly by R Kelly, and as I pounded my way to the top I was finally silenced. I looked out over the little city I have lived in all my life, and absorbed the sense of accomplishment for a minute before heading back downhill, humming We Are the Champions without a shred of irony...
Friday, April 10, 2009
Pasadena 5K Finisher's Photo
This is the ONLY photo of me available even though right after this I put my sweater down and took another one! There were photographers literally standing on the course, doing NOTHING! Whatever, I got my medal!
What is Cyber Knife?
Cyber Knife is a robotic radiosurgery system utilized for treatment of both cancerous and non-cancerous tumors throughout the body. It is extremely accurate and able to pinpoint the exact location of the targeted tumor with the assistance of MRIs and a technician's guidance. My neurologist, Dr. Duma, performs neurosurgery, Gamma Knife, Proton Beam, and Cyber Knife personally. I know when he chooses a treatment for me he is making the best choice for my individual needs and is not limited to specific types of surgery. A typical Cyber Knife treatment starts with a foam molding of your body being made. You are given an MRI in that mold, and the doctors use that information to form a treatment plan. Once the doctors are ready to begin you settle into the mold which is actually quite comfy. According to the Cyber Knife website, treatment lasts between 30 and 90 minutes depending on tumor size and location. During treatment the robotic arm rotates all around the patient, painlessly zapping the target with an invisible beam of radiation. Sometimes treatment is done over a period of several days, spreading out the amount of radiation delivered to the tumor in order to spare the healthy cells surrounding the area from radiation damage.
I have had Cyber Knife one time with Dr. Adler at Stanford who is actually the creator of the Cyber Knife. My treatment lasted one day, and my only side effects were a bit of fatigue and nausea for 1 week. The tumor was located in my upper C spine and visibly stopped growing at my 6 month follow-up MRI. This time I will be treated in Vista by my own neurologist, Dr. Duma. He insists there are no ill side effects, and that my prior experience of fatigue and nausea were due to the stress and anxiety surrounding the process. The Cyber Knife website states that patients may experience minimal side effects for the first week or two. I am opting to believe I will feel perfectly fine, but do not think I am so weak as to have created my symptoms as a stress response the first time around. Regardless, the possibility of being a bit tired for a week is nothing compared to the fears I would be facing if I was having regular invasive surgery. It amazes me that just 15 years ago my Mom had no options, and today I may have 3 tumors treated in a day, 2 of which are only being treated "just because we may as well while we are there!" Without radiosurgery I would have had at least 3 or 4 brain surgeries by now, and am not sure my body would have even been able to handle that. If Dr. Duma decides to radiate all 3 of my spine tumors, I will not have a single active tumor in my body!
I feel so blessed and grateful to have these treatment options available to me and to be under such great care. I only wish all people with NF2 were able to recieve such a high level of patient care, and pray for the day in which we truly have universal health care.
I have had Cyber Knife one time with Dr. Adler at Stanford who is actually the creator of the Cyber Knife. My treatment lasted one day, and my only side effects were a bit of fatigue and nausea for 1 week. The tumor was located in my upper C spine and visibly stopped growing at my 6 month follow-up MRI. This time I will be treated in Vista by my own neurologist, Dr. Duma. He insists there are no ill side effects, and that my prior experience of fatigue and nausea were due to the stress and anxiety surrounding the process. The Cyber Knife website states that patients may experience minimal side effects for the first week or two. I am opting to believe I will feel perfectly fine, but do not think I am so weak as to have created my symptoms as a stress response the first time around. Regardless, the possibility of being a bit tired for a week is nothing compared to the fears I would be facing if I was having regular invasive surgery. It amazes me that just 15 years ago my Mom had no options, and today I may have 3 tumors treated in a day, 2 of which are only being treated "just because we may as well while we are there!" Without radiosurgery I would have had at least 3 or 4 brain surgeries by now, and am not sure my body would have even been able to handle that. If Dr. Duma decides to radiate all 3 of my spine tumors, I will not have a single active tumor in my body!
I feel so blessed and grateful to have these treatment options available to me and to be under such great care. I only wish all people with NF2 were able to recieve such a high level of patient care, and pray for the day in which we truly have universal health care.
Thursday, April 9, 2009
MRI Results!
Yesterday Paul and I headed to Hoag Hospital in Newport Beach for a check up with my favorite neurologist. We slowly inched down the freeway, passing a van crumbled on the side of the highway while a big rig sat nearby unscathed. I tried to forget the images my eyes had briefly absorbed when I checked the MRI disk on my computer to be sure it held all the correct exams. I pushed the anxiety away and left it on the highway with the crumbled van...
We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.
Dr. Duma came in and we got down to business...
I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.
My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.
My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.
My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.
The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.
I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.
I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!
*I will explain CyberKnife tomorrow*
We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.
Dr. Duma came in and we got down to business...
I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.
My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.
My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.
My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.
The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.
I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.
I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!
*I will explain CyberKnife tomorrow*
Tuesday, April 7, 2009
MRI Dreams
It's 8 am and I just woke up, have been asleep since 4 pm yesterday. My online mommy friends comment how lucky I am and I murmur a smile as the grogginess fogs my thoughts. My body feels slow, like a grape falling through not quite set jello. I forced myself to run yesterday, and my feet carried me across hot pavement until I doubled over the bright green spring grass, wretching the last bit of home made pumpkin bread unsettled by my awkward gait. I took a swish of water and kept going, forcing my eyes to ignore the hot burning rays of sun creating criss cross patterns on the sidewalk between the shadows of leaves. I ran straight to the gym and went through all the usual motions and repetitions, 3 sets of 12 on every machine I have figured out, yoga, more sit ups, and finished just as Paul pulled up in the van. I plopped down inside, sweaty, out of breath, and nodded off on the 3 mile drive that felt so far just an hour ago. Just a quick shower later and I found myself in the MRI room. Has it been 6 months already, or have the last 6 been a dream and I have never left to begin with? 2 muscle relaxers later that MRI bed is like a womb, I floated in and out of consciousness until finally I emerged and walked back out into the harsh light, again into the van and whisked away home. Did I ever leave the van or was the MRI a dream? I tried to humor the kids, asking questions about their day, only to find myself sent to bed and falling into a deep sleep. I woke suddenly and it was pitch black, it couldn't possibly be 2am? I tossed and turned the remainder of the night, finally rising as the sun creeped through my blinds and tossed slivers of warmth across my pillow. How can I be so tired when I have been dreaming since 12pm yesterday? Now I have to go act as if I am fully present and get through another day, Mica smiles will help, and JT hugs when I get him from school. MRI results later this week, and then I can pretend to be whole for an entire 6 months...
Subscribe to:
Posts (Atom)
