Sunday, August 31, 2008
Friday, August 29, 2008
Family is what it is all about to me. I learned at a young age from my Nani and Daz that family means love with no restrictions. It means sitting around the table having a good meal, hugging every day and kisses every night. It means telling the people around you how much you love them, and having tickle fights as often as possible. Now I have built my own little family unit and I can only hope to instill the same values in them as my own family did in me. Recently in a talk with some single girlfriends one made the comment that she wouldn't want to have to put everyone's needs above her own. I feel that I am a part of a bigger whole now, and while that may mean sacrifice to her, to me it means satisfaction.
Wednesday, August 27, 2008
Tumors: I can tell you that currently I have about 5 brain tumors, all of which have been radiated at different times using Gamma Knife. All of which so far have not grown since being treated. 3 years ago I underwent a massive spinal surgery in which my surgeon removed so many tumors going down my entire spine they couldn't count. Some were compressing the spinal cord as much as 80%. There was bone removed and muscles cut, it obviously is something that will always cause me pain. I refuse to take pain relievers so I just "suck it up" as my husband would say. I want to be sure people understand that having your entire spine cleaned out in one surgery is not very typical at all. The neurologist went in to remove one area, with the plan of going back in after I had recuperated. However with modern technology, during surgery a surgeon has equipment which tells them if the spine is still stable. My spine stayed stable, so he kept going. Imagine my shock when I woke up with a wicked scar going down my entire spine! Now it has been 3 years and several tumors have grown back, which is what they do. That is the problem with NF2, you keep fighting, and it fights back. I also have several random small tumors in my lumbar spine. I was recently diagnosed with ovarian cysts and my neurologist's nurse has now told me that may be NF2 related as well.
Loss of function: Obviously, I am completely deaf. I cannot hear at all, and hearing aids do not help because there is no sound to amplify. My hearing nerves are completely severed. Near the hearing nerve is the vestibular nerve which controls your balance. I have very bad balance, I cannot stand on one foot let alone walk a straight line. This loss of function is what contributed to me almost drowning at Raging Waters! My entire left side of my body is weak. I can't use my left hand for any small motor function, and cannot open or grasp anything tightly with it. I have double vision which has gotten better after having had the tumor behind my ocular nerve treated with Gamma Knife, but when I am tired everything splits into two!
So now you are all caught up! I have my MRI's this month and will report back here. I have been taking Propolis for a full year now and hope I have had no growth. If I have I will probably continue the propolis for 6 more months to give it more time. There was a full month I did not take the propolis for lengthy reasons I wont go into. I am nervous to find out the truth about my ovarian "cysts" and am hoping I have not had any of my tumors grow freakishly large.
It seems so cut and dry reading it typed onto a plain white screen. As I absorb the reality of the situation I feel oddly disconnected from the future. Mostly I think, I will beat this! I will run, fight, and try anything to stop the progression of this disease for myself and my son! Then there is a tiny but vicious voice deeper in my mind that reminds me that is what my Mom used to say, and frightens me with possible worst-case scenarios. I try to refocus my mind on the positive, I am not a hippie who thinks that will actually alter reality, but what would be the point of living in fear? Regardless of how my story ends, do I want my character to be crippled by fear, or fearless?
Monday, August 25, 2008
Today is JT's first day of first grade! I walked him to class this morning and kissed my little man good-bye. I sniffed back a tear as he made his way into class, I could see the uncertainty in his expression. I wanted to run to him, pick him up, tell him everything in the world is safe and certain. I wanted to coddle him, play with him, build a fort and whisper secrets over goldfish crackers. I could only force myself to back away, to trust that I have raised him right thus far, and now is his time to make his own tiny footprints in the world. He has to stop being my baby, and start being Joshua. It tugs at my maternal heart strings but I am also incredibly proud of the amazing child that he is. Intelligent, compassionate, silly and full of potential. He is my first born, my heart, my blood and my inspiration to stay on the straight path. Good luck little man, I love you JT...
Saturday, August 23, 2008
I've had these soul aching dreams often since my Mom has passed. Those who were close to us know we fought terribly when I was a teenager. We made our peace before she passed but apparently my sub-conscious didn't get that memo. You always hear about people getting visits from their loved ones, loving embraces stolen in the most vivid moments of their dreams. All I seem to have harvested is anger. In my most stressful moments I recall my Mom's cold fingers, never enough circulation to warm them, and so oddly soothing as she stroked my hair. In a flash my mind transposes the image of her cold hands resting that final time in the hospital, never to rouse again... Why can't I dream of the hours of precious time we spent in those last few years?
Since first sharing here about my Mom in the beginning of this blog I have not had any of these dreams. Is it completely twisted that I miss her even more? The volatile visits were at least a chance to see her, and what is left without those images is an unmistakeable void...
Friday, August 22, 2008
I am trying to fit everything in, knowing my baby boy JT starts first grade Monday and things will only get more hectic then as Mica starts playschool the following week. On top of it all JT's allergies are worsening! Last night in karate his ankle broke out with hives and we made a hasty exit. He had another series of blood tests after finding he is only moderately allergic to eggs, milk and mold. Those allergies shouldn't be enough to trigger the reactions he has been having, so this new panel will test for a lot of scary things that I wont go into unless I am forced to by circumstance.
In the coming month I will be following up with JT's allergist as well as taking him to the neuro opthamologist to check the tumor he has on the retina of his right eye. We track it annually and so far no growth since being found! I will also have MRI's and be seeking treatment for the ovarian cysts my doctor recently diagnosed. I told you the cards are shaking! I will just take it day by day, moment to moment if necessary...
Wednesday, August 20, 2008
Maybe by having read this at least a few people will be more aware when in the company of a deaf person of what they may feel watching everyone through a glass wall.
Monday, August 18, 2008
Mediterranean Sandwich (roasted eggplant, yellow squash, zucchini with pesto spread)
Soyrizo Veggie Chili
easy 5 miles and strength training
Bean tacos, brown spanish rice with tomatoes, and green beans
4 mile morning walk, 3 mile repeats and strength training
Eggplant Parmesan and gnocchi
crosstrain on elliptical for 500 calories, strength train
BBQ! Veggie Burger kabobs (wedges of onion bagel, veggie burger, pickles, cheese, & cherry tomato BBQ'd and served over greens, and grilled zucchini!)
Falaffel pitas with eggplant hummus and green leaf lettuce served with pineapple
10 mile run!!! then hit the beach!
Sunday, August 17, 2008
Thursday, August 14, 2008
While I am recuperating I have been spending a lot of down time just hanging with my kids. We took a trip to Albertsons this morning...
As you can see JT's face is a bit swollen, he looks like the Joker! He has had an ongoing allergy problem the past few months. Out of nowhere his face just swells up like Hitch! This is the 5th or 6th time. He saw a pediatric allergist and had a blood test, so we will know what is causing it at his next appointment.
Tuesday, August 12, 2008
I left that first Deaf event feeling very alone in the world, an island unto myself. A hearing person would attempt to speak to me and finding I could not hear them immediately categorize me as Deaf. Deaf people would see me speaking rather then signing, able to voice clearly as a hearing person would while not signing fluently, and classify me as hearing. What about how I see myself? Why do I need to be either or? I float somewhere in between both worlds, never fully able to participate in either as a full fledged member.
A year ago I decided to step up and do something about it. You aren’t surprised by that are you? I hate complaints without action! I started a local ASL group on meetup.com. I posted flyers, and by word of mouth I have 100 members today. When I am at our monthly meeting it is the only time out of the entire month I am able to communicate with both Deaf and hearing people with equality. There are all levels of signers who participate, from ASL 1 students barely learning to fingerspell, to Deaf members who sign ASL fluently while gladly slowing down and assisting the rest of us. I have learned so many new signs, but more importantly I have made a lot of really awesome friends. The entire premise of the group is that all are embraced and made to genuinely feel welcome. All you need is the will to participate and learn. If you are interested in our group please check us out here!
Monday, August 11, 2008
When I run I am always a bit paranoid. As a deaf runner I have to be extremely careful. I don't hear people calling out to me, or cars coming up behind me. I always try to run against traffic so if the sidewalk stops and I am forced to run in the street I can see exactly what is coming. I don't even understand why there are so many areas without sidewalk! What about people who are in wheelchairs? How are they supposed to get around? Whatever happened to accessibility for all?
Speaking of accessibility (yes this is a potluck post, I am bringing a little bit of everything!) why are all movies in the theatre not subtitled? I don't care if the subtitles would "bother" some hearing people, try not being able to understand the movies at all! The only option now is rear view captioning, which is a great advance, but incredibly difficult to work with. I always have a headache after trying to read the wobbly words on a tiny reflector while keeping up with the projection at the same time. I have to wait weeks for the movie I want to see to possibly play twice and at random times. As a progressive society a place as mainstream as the movie theatre should be held to a higher standard of accessibility. I am going to research this a bit and see what I can do to try to change it. I refuse to just complain without making my voice heard!
Now I am off to a playdate with the Fabulous Moms of RC, today I am off training and really looking forward to my ASL group tonight! Anyone in the Inland Empire is welcome to join us! We meet the 2nd Monday of every month at 6:30, in the courtyard between the foodcourt and Starbucks at the Victoria Gardens mall in Rancho Cucamonga! People of all signing levels are welcome, even those who just have an interest!
Saturday, August 9, 2008
I personally have been tested and found to not be a candidate for a Cochlear Implant. People with NF2 often have Auditory Brainstem Implants implanted when they have their vestibular schwannoma removed. For some this provides a type of hearing, for others it does not work at all. I have wanted an ABI myself for years, but fortunately neither of my VS are growing since being radiated with Gamma Knife, and the ABI itslef is not reason enough for a brain surgery. People who are deafened by NF2 are unable to hear because the tumors destroy the actual hearing nerve. For a CI you must have a working hearing nerve. That is why many NF2ers have ABI's, because an ABI bypasses the hearing nerve and instead uses electrodes planted deep into the brain stem.
I am trying my hardest to provide a place where people can learn about NF2, but I am not the most knowledgable patient, and can only share what I have learned myself. I encourage anyone with a deeper knowledge to share in the comments, and also welcome any questions or corrections.
Good Luck AMANDA!!!
Friday, August 8, 2008
Oh how I wish this was an isolated event, and that my gorgeous daughter Mica would never commit such a foul act in public. Unfortunately Little Miss Diva has a sensitive stomach. Between her bowels and her attitude, not to mention JT’s penchant for spilling drinks and eating with his hands as I hiss at him to behave-or-I’ll-smack-the-brown-off-you, we have become “That Family.” You know, the ones with the screaming, stinky toddler demanding the fork she has thrown for the 3rd time while our older child whines incessantly that he wishes he were at Burger King? THAT family. Of course Paul would always chuckle, a bit cheekily actually, whenever he came home and had to listen to me complain about Mica releasing her liquid nastiness allover a shopping cart at Trader Joes. Until one day, he was there with me. Parent Bloggers has a contest to blog about a family like ours dining out with our precious offspring, well on a recent trip home from Las Vegas we stopped for breakfast at Coco’s… A bit tired (hung over)we dragged the kids in and attempted to keep them busy with the cheap crayons that always break just as the waitress tries to take our order over the high pitched screeches of my crayon obsessed children. I suddenly detect a smell… I know this smell, it is oddly familiar, sweet, sour and rank all at the same time. Paul and I lock eyes and both look slowly down to see green bile pouring out of Mica’s cute pink sweats, dripping contemptuously down the highchair and saturating the floor beneath her. Panic sets in, and we vainly attempt to stay calm and create a game plan without alerting everyone around us. Paul fetches a plastic bag and napkins from our waitress who is pretending to be oblivious to the entire disgrace, she obviously does not want to be associated with “That Family.” Paul dry heaves and gags as he wipes as much as he can into the bag. I run to the car and grab a towel. The people sitting behind us shoot us damning looks, and leave without ordering, no doubt talking the whole way home about my smelly princess. I quickly wrap Mica up and do a walk of shame out of Coco’s, snaking a trail of tangy stench in our wake. In the car I immediately deride Paul for showing a moment of dry heaving weakness, his defense is that as he began to wipe, the poo… swished. Next time we’ll keep our stink to ourselves and just drive through Burger King!
(This post was written for Parent Bloggers Network as part of a sweepstakes sponsored by Burger King Corp.)
Wednesday, August 6, 2008
Now I am home and facing all of my Cinderella chores which I better attack before my hard-working husband comes home to a dirty house!
Tuesday, August 5, 2008
Monday, August 4, 2008
…Little did I know what was in store for me…
I should have known I could not get through an entire day of physical water slides without incident. I have always been accident prone, the scars on my knees attest to my supreme klutziness. At each slide I grilled the operator… “Has anyone ever died on this ride? Has anyone ever broken a bone?” The young lifeguards earnestly answered no, but I could see the lies etched on their faces. As I neared my turn on the Speed Slides I started to panic, my heart lurched in fear as I stared down the dizzying drops of the slides. Paul encouraged me and next thing I knew I was whipping around in the water, screaming my head off… “Paaaaulllll I haaaaate yoouuuuuuu!!!!!!!!” (I don’t mean it, don’t get upset now) In sheer terror I squeezed my eyes shut and felt the world drop out from under me, having studiously counted the drops while in line, after the second drop I took a deep breath and braced myself. I slammed hard into the water, my top flew up, and the world seemed incredibly far away. I started swimming for the surface but only felt concrete everywhere I reached. Somewhere in the recesses of my mind I remembered people on the crew discussing how vestibular nerve damage from the tumors we grow in that area can cause you to not know which way is up under water… a primal fear wrenched my entire soul and I became incredibly desperate to reach the top. Kicking, flailing, looking for anything to swim toward but surrounded by nothing I suddenly spotted Paul’s shorts. Within seconds he had pulled me up and out of the water and was staring into my eyes in urgent concern. I gasped, sucking in the precious air, dizzy, completely discombobulated. I choked out, “I didn’t know which way was up!” Having doubted my balance issues in the past and thinking them a huge cover-up for having had a few too many beers (or vodkas), Paul told me “I believe you now!” and hugged me tight to him. I was so incredibly shaken, nevermind that the water was only a few feet deep, that I was drowning as much as Little John in the creek on Robin Hood, I was completely lost under that water and was incredibly grateful Paul realized I wasn’t just messing around and pulled me out. The lifeguard was yelling at as to exit the pool, never left her stand or showed a slight bit of concern. I jokingly told Paul she was yelling "No Drowning! If you are going to drown, please exit the poooool!" As I dragged myself out like a drowned dog I could only say one thing… No more water slides!!
Saturday, August 2, 2008
There are several tumor growth suppression therapies being researched now that may have the capability to stop NF tumors from growing. Propolis is a drug therapy I am currently taking as part of a non-clinical trial. In a recent study mice were implanted with NF1 tumors and then treated with Propolis, the tumors were suppressed 90% in 100 days. Propolis is extracted from the resin bees use to build their hives, and has something in it called CAPE which has proven tumor fighting abilities. CAPE blocks the PAK enzyme which is responsible for the abnormal cell activity that leads to tumor growth. The specific form of Propolis I am taking is called Bio30, and it is available from Manuka Health in New Zealand for less then a dollar a day for treatment. Propolis has been used as an over the counter herbal remedy to strengthen the immune system for many years.
I have been taking Propolis for one year this month. Before beginning treatment I had a slow but steady progression of tumor growth on each biannual MRI. After 6 months of treatment my MRI showed no growth of any of my tumors. I am due for another MRI in the next couple of months, and will be sharing my results then.
If you are interested in Propolis treatment for NF1 or NF2 you should check out the “NF2TrialTalk” yahoo groups list. Trial Talk is the place to find information on all current drug therapies for NF, including the home of the Propolis Bio30 chart.
Everything in this post is from my own personal knowledge, and I have checked my facts as thoroughly as possible. I am still not a doctor, and if anyone has any further information please feel free to share it in the comments.
Friday, August 1, 2008
You can learn more about my run and donate here: http://www.active.com/donate/nflongbeach2008/OHernan4
Thank you Sheila for coming up with this great idea!!
Unfortunately choking seems to be another side effect of one of my tumors I just have to learn to live with. Having a slight cold to begin with made last nights episode that much worse, the burning traveled down deep into my chest and only Nyquil helped me finally ease into a restful sleep. I’ve had swallowing exams, neurological exams, and my MRIs reviewed. There is no clinical explanation for these occasional choking spells. As frightening as the episodes are, there is nothing I can do besides staying calm and keeping water with me.
This morning Mica’s round chubby face and lopsided pigtails peeked over the blankets at me… I awoke with a lingering cough and a delicious tightness in my arms and legs. I did my first tempo run yesterday at the gym. I am only now beginning to work on speed and it was incredibly challenging to hold my race pace for 10 minutes straight. 10 minutes sounds so short but feels like an eternity when you are running all out. After the run I really pushed myself on my strength training, adding extra reps whenever possible and stretching deeply between machines. It was worth the exertion, I left feeling weary but renewed and worthy of my day off today. As good as running feels, nothing beats lounging around the couch with my adorable rugrats…