40 and On

Summer 2010!

2010-08-21T19:20:00.024-05:00

I have neglected my blog for a year now! I have been reading some inspiring pages on the web, tho and I want to start again.

First I want to tell you that my puppy Jack, who will be 2 years old in 8 days, has had a career change. Linda, his trainer, and I have mutually decided that he is too energetic for the type of service tasks I will need him to do. In Linda's words "He is not showing signs of slowing down. I can have another dog trained for you

before that happens (if it happens.)" Jack is going to live with Linda's family. He will be trained to retrieve do

wned ducks and Linda's husband will take him hunting in the fall with their other two yellow labs "Honey" and "Decoy."

After only a week 0f searching high and low, she found a dog who passed all her tests with flying

colors! Incidentally, it was "low" that she found him.
The Odessa pound. You can't get much lower than that. Despite being skinny and tick ridden, he was the best natured dog ever. Looking at his teeth, she thinks he is younger than 2 years old.

He is just amazingly sweet, smart and loyal. After only a week with Linda, she told me he is so loyal that there is nothing he wouldn't do for his person.

Fall is Coming!

2009-08-31T10:37:00.002-05:00

I have renewed energy today! If not physically, then mentally! Oh, I can't help but enjoy the cool breeze. Its 73 and it feels awesome outside. Its August 31st and we have had temps over 100f this month. I have no tolerance to the heat anymore now that my body thermostat is broken. I never get chilled anymore. Its uncomfortably cold in my house for others, but it feels good to me and heat just makes me sick. That being said, bring on the cooler weather of fall! My a/c bill will get relief too.

My puppy is laying under the table at my feet. He will be one year old tomorrow, September 1st. I absolutely adore him! He is so smart and I can't wait to teach him something new. The lady who will be training us is coming over Sept 6th. I contacted her about obedience training, but after she read my goals to have him trained in service tasks, she informed me she was qualified and experienced to to train him in service dog tasks too. WOO HOO! Our prayers have been answered. I was resigned to the fact I'd have to move to Houston to find a suitable trainer. Houston to be close to MD Anderson and the great medical center there. For now, I will plan to continue flying to Houston every 3 weeks for Avastin treatments.

Back to Jack. So far, he walks well on the leash, he knows sit, down and stand. He knows to sit and wait for the ok to go to his food at mealtime and sit and wait for the ok to jump out of the van. We are working on stay. Hes learning not to maul visitors. He is still a puppy. A puppy in an adult body, as my friend Rob says. He is making progress though.

To MD Anderson Once More

2009-01-25T11:19:00.008-06:00

First, I saw my future service dog and life partner, Jack. We met his trainer at Rice Village shopping center and I got to spend time with my boy. He's still a baby. Almost 5 months old. So we decided to let Kelli keep him another month and get him used to walking on the leash and socializing him more. That gives me more time to get his stuff ready too. I will clicker train him, then when he's older I'll train him to do service dog tasks but I haven't researched a trainer or facility yet.

To my good fortune, my friend Haylie went with me to Houston as I had a very busy schedule AND the Rotory House had no vacancies (don't they know who I am by now?) We stayed at the hotel around the corner (and thats another story.) Had my MRI's and CT and the doctor reported that all was stable.

Saw Dr. Slopis, the NF doctor and he explained why I was probably having the upper body prickles, redness, imbalance, and headaches when having coughing spells. I may have encountered a little swelling around my brainstem last time I fell, so was given a regimen of steroids. I was actually looking forward to those because they give me energy. Incidentally, ALL my doctors at MD Anderson are excellent and I highly recommend all NF2'ers to go there if possible for complete NF2 care. We have so many more issues than just cutting out tumors!

I saw Dr. Schiffman, the neuroncology-opthamologist about my prism lenses and shes awesome! Another great NF2 doctor. I have tumors on my optic nerves and slight cataracts on my corneas which was all news to me, but I have good crisp eyesight. I just have a problem with double vision, but its corrected with prism lenses. Unfortunately there is not an eye doctor in my town that is a specialist in prisms. Grrrrr.

I had my 8th Avastin treatment uneventfully. No one said anything about my tumors shrinking, but at least they don't seem to be growing. YEAH!

Awesome Inspirational Quotes

2009-01-15T13:04:00.002-06:00

"If my hands are fully occupied in holding on to something, I can neither give nor receive. "
- Dorothee Solle, theologian and writer

"Love at first sight is easy to understand, its when two people have been looking at each other for a lifetime that it becomes a miracle. "
- Amy Bloom, best-selling author, psychotherapist and educator

"The only fundamental rule for me is to just be yourself. Let your freak-flag fly, and if someone doesn't get you, move on. "
- Drew Barrymore, actor and producer

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Follow up at MD Anderson in Houston

2008-10-12T16:07:00.000-05:00

Flew to Houston for 3 days of MRI's and other tests, as well as the 6th Avastin IV treatment. They didn't schedule my Avastin treatment until after I saw Dr Kurzrock Friday and it was too late to make my flight home so I stayed another night. My lab reports were good. They hadn't gotten my MRI and CT reports yet but since I'm doing so good (and no side effects) Dr K said I can have my next 2 Avastin treatments at home and then go back for MRIs etc the 3rd time which means no MRI's for 9 weeks. Yay!

Another one down, another step closer to "Making NF2 History!".
Johnna
Midland, TX
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Service Dog

2008-09-28T12:35:00.000-05:00

I thought I'd let you all in on my service dog plans (for now anyway). I live alone and until recently I had a 17 year old doxie who was my companion. I applied for a service dog. I was accepted but was told I had to choose between a hearing alert dog and a balance dog bc they have different temperaments. A hearing dog can be a little dog that pounces on you to get your attention and runs off to lead you to the sound and a balance dog is usually big, calm and stays by your side.

I chose a balance dog bc I've been deaf for 18 yrs and I don't need a hearing alert dog to make me more independent. I need a dog that will help me walk by helping me keep balance and to retrieve things for me since I can't bend over or kneel well.

I was accepted to the Texas Hearing & Service Dogs program, but it takes up to a year for them to find a rescue with the proper temperament and personality to train to meet the needs of the type of service that you need. The cost to me would be free but they say it costs them $17,000 to find, keep and train a dog so you are greatly encouraged to help with fund raising to help cover the cost.

I am excited by the prospect of training a dog and having a companion and partner that assists me and goes with me everywhere. So even tho I'm accepted and participating in the service dog program, I am reading everything I can on training a dog myself and keeping eyes open to find that special dog. I've joined a yahoo groups list that is devoted to training your own service dog. I've been toying with the idea of getting a dog and going for it, but I'm afraid as I've never trained a service dog and ill have to pull out of the Texas Hearing & Service Dog program bc I can't have another dog along with their dog. Until I'm ready to take the plunge I'm going to keep reading and learning bc that's what THSD requires anyway. Ill keep my blog updated on my progress with this endeavor.
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Memorial to Scarlet 7/11/92 to 8/12/08

2008-09-02T15:02:00.009-05:00

August 12th, Scarlet, my long time friend and companion, crossed Rainbow Bridge. I've known she had kidney disease for several years. I had been feeding her special food and supplements, but at 17 years old, it finally caught up with her. She became listless and her coat dull and dry. She slept all the time. When she was awake, she looked disoriented and confused. Although she didn't seem to be in pain, I knew it was time to let my friend go, as she had no quality of life.
R.I.P. my sweet girl.

Heading to Dripping Springs

2008-08-21T13:03:00.000-05:00

I'm so excited, I can't eat my lunch. I'm waiting on my friend Haylie. She worked till noon and now she's loading up her truck for the trip. What did I do to deserve a friend like her. Nothing. That's why I call her my Saving Grace.

She and her 15 year old daughter will take me and another friend to Dripping Springs to a service dog orientation tomorrow. I had to write a one page essay on how my life will change with a service dog. I didn't really do that. I wrote about how my life has changed in the last few years and that a service dog would bring me back to independence and enrich my life. I really don't know everything a service/hearing dog does, but I'm willing to share every minute with my canine partner.

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Something to Think About

2008-08-02T13:40:00.005-05:00

I love quotes by CS Lewis!

"You don't have a soul. You are a Soul. You have a body."

C.S. Lewis

To a T!

2008-07-29T13:20:00.003-05:00

"I love living. I have some problems with my life, but living is the best thing they've come up with so far."
Neil Simon, Last of the Red Hot Lovers

2008-06-14T14:55:00.004-05:00

Here I am and I'm still alive! My quality of life is good. I'm making progress. I remember when my husband would tell me "keep the faith" and "I'm a work in progress." When exactly did he stop believing that himself? When exactly did our marriage die? A year later, I'm still coming to terms with that. I haven't had closure.

I have no regrets. I was sick and he didn't want to be stuck with a terminally ill wife. The problem is I have living to do yet too. I wasn't ready to die so he can go on with his life, leaving him the grieving widower. Alive, but living "the new normal," our lives no longer mesh. My life isn't over. Its just a lot different than it was. My priorities, beliefs and goals have changed drastically. I have to learn to live with the cards NF2 has dealt me. 10 years ago, despite having NF2 and being completely deaf, I was independent. I had a good career. I had accomplished a goal of getting a bachelors degree. My priority was my marriage. My dreams of having a family were quashed, but I still had hopes and goals for the future. After we hadn't had luck getting pregnant, Brad told me he didn't have it in his heart to adopt. After coming to terms with the loss of that dream, I still believed in our future together. We had built a beautiful home in the country (ironically, we had it built handicap accessible but I never got to use it that way) and I looked forward to building on to it and our 1.5 acres. I looked forward to traveling with Brad. We had already gone to Jamaica and Australia and enjoyed our experiences very much. To be continued... (2/24/09- I chose not to continue this topic. My marriage is over and so is that chapter of my life. I want my blog to be about my current life and witnessing to the wonderful blessings God has bestowed upon me!)

Quality vs Quantity

2008-05-17T14:22:00.008-05:00

I read a post on the Ependymoma list today. It was from a woman whose husband is paralyzed from the neck down. I asked her if his paralysis followed surgery on his ependymoma. She replied that the medical community won't say exactly what caused the paralysis, but her hub never learned to walk after the second surgery he had and they think it may have been the radiation he never should have had. After I had surgery, my neurosurgeon said that was it as far as surgery benefitting me anymore. Further surgery would just interfere with the quality of life I had. After checking in with a neuro-radiologist and radiation oncologist in Dallas at Baylor, we were told that my tumor infiltrated the brainstem and radiating the brainstem can cause more problems to my quality of life than any benefit in stopping the growth or shrinking the tumor including myelitis (inflammation and swelling of the spinal cord) and brainstem necrosis (death of tissue.) I decided not to take the risk of these conditions that would interfere with my quality of life. My quality of life (QOL) is not perfect now, but I still have bladder control, my vitals are good and even though I am weak and have very poor stamina, I can still walk and I have a good degree of independence and QOL.

A quote to live by

2007-07-07T17:53:00.001-05:00

“Be Who You Are and Say What You Feel Because Those Who Mind Don't Matter and Those Who Matter Don't Mind.”

Dr. Suess

My old girl and loyal companion. The one constant in my life.

2007-07-05T16:10:00.002-05:00