Day 18 - "Kemo Sabe' " or "1 down, 5 to go!"

Today was Barbara's first stay in the "infusion" area at Dr. Morrisey's offices. A place to lie back and relax and let the chemicals work their magic.

To mitigate the psycholinguistic effects of the term ascribed to this process, I've started calling it "Kemo Sabe' - words from the old Tewa Indian dialect that were uttered by Tonto to the Lone Ranger beginning with the old radio show of the same name. Words whose meaning has been debated by scholars for decades.

According to the son of the man who wrote the scripts for "The Lone Ranger" show, "Kemo Sabe' " means "Trusty Friend," or "Trusty Scout." I think both meanings fit. The room, the staff who work there, and the whole process, each is a new friend to walk beside us on this journey; more importantly, each one contributes to a unified vision of the road ahead - one that will be full of turns and surprises, but a road that also leads to a better life and new vistas to share with all of our "Kemo Sabe's.'

Peace

David

It’s a Brighter Day!

Hi everyone. I’m sorry for not posting anything here these past few days, but I was knocked down and out by a stomach virus. Not at 100% yet, but feeling better just the same.

Barb has been home for a week now and you can definitely see and hear how much better she feels he positive difference in her. She’s back to doing almost everything she was doing before the surgery, despite my best attempts to get her stay put! She is still resting a good deal of the day and enjoying the extra time to read all of the cards from her friends and family, reading her new Kathy Griffin book, pet the cat. and generally taking things in stride, doing a bit of food prep here and there, as well as washing clothes. She wants to feel independent again after having spent so much time tethered to a hospital bed. Those were not fun times.
We had “the big meeting” with Dr. Morrissey, the Gynecological Oncologist this Thursday and heard some excellent news! Barbara will start her chemotherapy treatment this Tuesday. Her treatment schedule will be: one week of Chemotherapy, then three weeks off until she has had the complete program of 6 treatments. Lots of people want to know the stage that she is in. We look at that a bit differently – the stage is just a number and letter that carry a lot of stigma. Better to think of the healing process and the ultimate goal, rather than the absolute stage
It is our hope that this treatment, coupled with the right foods, the right exercise, and the right amount of love and prayers from family and friends, that she will win this fight.

As the weeks wear on, Barbara will feel like doing a little bit more each week, but she will also need continued help and support from her friends and colleagues. To all of you, thank you for the kind words and cards and for all of your support. To those of you who said you are willing to do anything to help out, we will be in touch!
Love,
David

Day Five: The Sun Is Shining

"Home Sweet Home" has a special meaning now that we are all Home together again. Eight days in the hospital is a long time for someone who never wanted to be there in the first place, and who came in to it under such extreme circumstances. On the positive side, that experience has caused her to work harder and to do all of the right things to heal from he surgery as quickly as possible.

Today's goals are to rest, heal, and gain strength. We are hoping to be able to go out on the patio together and sit for a while to enjoy the garden and the weather. She still tires easily, even after a few minutes on the phone, but she is hoping to reach out to everyone soon. Barb has made a few phone calls to family and friends, and entertained a few visitors from the neighborhoods who came bearing gifts of food and flowers and most importantly very good will and love. Thank you Dorothy, Robin, Kathy, Joanne, and Clare and Dana!

Also a big heartfelt hello and a "shout out" to Sharon Raimondi and the NYSCEC Board and to Jim Stowell, Marcia Atwood, Mike Schulman and the CNYSEA board for the lovely flower arrangements. They mean a great deal to us to be able to look at their beauty and remember that so many people are sending their thoughts and prayers to Barb to help her heal.

We are looking forward next Tuesday's appointment with Dr. Morrissey to discuss further treatment options - more on this next week!

Take care, everyone, and feel free to leave a comment here!

Day Four

Barb is home today!

She is feeling much better but still not ready for all of her friends to visit. Please email or call me first and we'll let you know how she is feeling.

Ok, well I am off to do some errands. My sister is here and keeping Barb Company and keeping her in her chair so she doesn't get up and try to do too much!

Thanks everyone for the cards and flowers , thoughts and prayers, and well wishes and food!

With love and respect,

David

DAY 3 (Actually 12, if you count the first signs)

This is the third day of keeping this blog and the 12th day since Barb first experienced the symptoms that led her to an emergency surgery a week ago Thursday. She has come so far!

Last night, she sounded, looked and felt great! She only has two tethers - oxygen and heparin - and she has passed all of her other tests! All we have to do now, is get the INR blood score up to a "2.0" and she is home free! We are hoping she will be home this Saturday.

Please keep your thoughts and prayers and cards coming as they are helping. We appreciate all of you so much for your love, kindnesses and compassion, that you are sending her way.

With love and respect, David and Barb

DAY TWO

Barb got a few steps closer to home today!

A PT came to her room today to talk about her physical therapy (some say PT stands for "Physical Torture"). Later, she may try climbing some stairs. She walked around the floor last night to prepare herself better for today, and today she took a walk; 2 full loops around the block, came back to her room and sat in the chair for 20 minutes.

The P.T. came in again and said she is very pleased with her progress. She ran her through the range of motions and then together they worked through several excercises that were printed on a double sided sheet of paper. Sounds like homework to me!

She he went back to sitting up in her chair, and O.T. came in and asked several questions regarding home logistics, checked for strength in arms, hands, and legs. She did great!

After all of that work, the "kitchen lady" came and gave her choices for what she'd like for lunch. She was very happy that she could order a turkey sandwich with lettuce and tomato on whole wheat bread, vegetable soup, and an Italian Ice.

After that, she watched a little of the food network and is going to nap for an hour until they bring her lunch.

That's it for now! More later.

Healthward

DAY ONE

Hi everyone,

This is the first in a series of daily updates about the love of my life - my wife Barbara. She was diagnosed with a tumor at 2 p.m., Thursday, September 4th, 2009, and by 11 p.m. that evening. Her surgeon told me that he removed 99.9% of the cancer that he found on her ovaries. Now, five days later, we are realizing - again - the amazing and incredible amount of love that her family, friends, and colleagues have for her.

This Blog is for all of you.

We are just learning about this new challenge and we want to keep it simple and manageable. We also hope that in some way, our journey can be one that heals us and gives others the peace that comes from knowing your loved one is all right.

The doctors have said that attitude is at least as important as all of the medical support. There is really only one attitude to have - we will fight this and win.

Today is a great day! Barb is getting her hair washed for the first time in 6 days - and we can all imagine how freeing and relieving that can be! The other good news is that Dr. Morissey's partner, Dr. McElrath, gave her permission to get up and walk around today. This is very important to the healing process - if she can walk, eat solid food, and a few other things, then that is enough to get her discharged from her "dungeon" (she hates her room - even though it is the only private one on the floor!) and home again. It's also important because it means the heparin drip is working and her blood levels are "therapeutic." You see, we had a little setback a few days ago - Barb was having trouble breathing which initiated another CT scan, which turned up two bloodclots - one in each lung. This is typical for a person who has undergone major surgery, and especially for someone who has some type of cancer. But for now, those two clots are on their way out, and we are all looking forward to getting Barb home as soon as possible!

With love and respect,

Dave and Barb

Finding My Musical Mojo

A few days before Christmas, 2006, I played my last gig with John Deere Green. Eleven evenings later, I was standing on the sidewalk of my daughter's apartment on Albany's Yates St. trying to understand what had just happened - why did my beautiful and loving daughter Lesley decide to take her life at the age of 25? Why was I arguing with the chief of Police about trying to get my wife there? Why was I making these sounds I'd never heard before? Sounds of grief and anger and disbelief and shock?

Those and all of the dozens of questions that followed kept me away from my drums for nearly a year and a half. I couldn't even listen to the radio, let alone sing or play one in a band. But on Father's day, 2008, my brother in law Gary persuaded me to sit in with his band a the "Bullfrog Inn" for "a couple of songs." I ended up playing for a whole set, felt that I had been awakened to the life and energy that was still in me. Not just to drum, but to work harder at answering questions and helping others avoid having to endure the same pain that I am working through.

A few months later, I was playing on stage at Northern Lights at Lesley's 27th birthday with her friends and their High School Band "Catfish." It was a Catfish reunion and they needed a Grapka in the band. Oh Lesley was there, all right, and I know she was proud of her Dad for helping to organize the "Musical Celebration of Life," (Http://www.mylegacylive.com) to honor her memory and her Legacy. But more importantly, she would have told her friends, proudly, "That's my Dad up there on the Drums." I drummed a whole set with my long time friend Jay Dugan and his original band, "The Notes."

For over two years, Jay and I were the nucleus of "The Sting," a popular Jersey Shore band. We are back, I am back, with my drums. We are getting together again on March 21 for a "rehearsal."

The songs on this site belong to the Notes and to Catfish. Over time, I will post songs from all of my bands that have been preserved on cassette tape and CD lo, these 30 years.

The dream lives on, and so will my love for Lesley - forever.

Focus

Last March, my friend Mary Ann sent me an email to console me, or perhaps just to tell me how she was feeling and empathizing with me because I had emailed her with my feelings and healing activities at the time. It made me cry, and still does, but in a good way.

I felt both sad and empowered by her words. Sad, because someone who I rarely see, who lives on the other side of the state, who only connects with me two or three times a year, was able to write something so touching - while people I have worked with for 19 years have yet to acknowledge my loss at all. Others tell me that they just don't know what to say, but I maintain that a simple I am sorry for your loss would be sufficient because one is left to imagine the worst in the absence of any consolable words from another. Empowered because she made me feel special again and mainly from my daughter's eyes as she imagined Lesley's perspective.

I frequently read Mary Ann's email to me because I need to hear and feel her concern to know that there are some very special people on this planet who mean the world to me because of their compassion and their understanding. I re-read her words to me because I need to feel and hear what I imagine my daughter would say to me from the other side, and I need to put myself in a reflective mode and dream of the days we shared together and the eternal life I look forward to sharing with her when it is my time.

Here then, is that very sincere email in poetic form:

FOCUS

Know that today I share my tears with yours
As time will never relinquish you of the pain of losing a child
Understand that many
Who have not experienced what you have
Often struggle with the "what to say"
And usually can only offer thoughts and prayers
As well with those who don't appear to be supportive
You share what I have heard from others
Who express their frustration over personal losses of
Family, so many friends and colleagues.

I am sure it does not seem possible a year has passed.
Focus on the struggle,
But focus more on your growth and efforts in trying to understand,
Focus on directing your energy in a positive way
To affect others who shared your daughters' commitment
And her belief toward mental health issues.
Picture her smiling upon you
For what you and your wife have contributed in her name ....
Dad,
I am sure this is a moment of pride
she would like to share with you,
as well as one of comfort that can reach across eternity if possible.
Capture your strength,
Recognize your courage,
When you experience them,
You have done amazing things in her name....

As you say, Good Morning - how are you doing today?
can certainly have different responses at various times and days.... you and I both know that is OK ......
Faith Hope and Love ....
Do not forget any of these ....
Faith that your daughter's love of you and yours for her
will always be there .....
Hope that the pain may ease,
Hope that your perspective will mold a future
that may be different because of your experiences
and because of your daughter's influence, and Love –
shared with others in her name will keep her memory strong
and her life an extension of the love you and your wife continue to share ......
with that love and her memory, she is never totally gone.....
only away for the time being
....... truly ......
smile and know that her presence and life –
as short as it was ....
certainly will be remembered
by many who were touched by her kindness, love and talent.

As the New Year begins -
in the hectic life we all live in ....
remember to stop every day and see what is good around you..... the "rainbow" that is captured behind the cloud,
small but evident,
only if one truly looks for it ....
it is there more often then we know .....
as I look for it each day on my way to work as the sun rises .....
it represents the hope and faith in God
that we both must maintain as we progress in our lives....
you are such a good person, caring, with so much to share –
I truly care that you will be patient
with all that you are feeling at different times on different days ...... and know that you can always share or call if needed .......
truly, you are in my thoughts and prayers -
that it makes you smile and feel a goodness that comes
from friendship across the miles ....
Enjoy today –
as you will in some way touch another as you have so touched me ...... thank you for sharing .......

AT implementation Rubric?

Many of our Local Assistive Technology Specialists (LATS) face the same challenge when it comes to assessment. Not only student assessment, but program assessment. One resource we share with them for program assessment are the QIAT matrices (download them at http://www.qiat.org <> ). But what about adapting these for student specfic assessment? When evaluating how effective we are with systemic implementation of the quality indicators, the range of descriptors are from 1 to 4, or from "unacceptable to best practice." As Joy Zabala recently pointed out on a listserv post, the range of descriptors for assessing students using something like the QIAT Matrices, they could be "current" to "target" or something similar. She goes on to say that current could serve as the baseline to evaluate progress and each step could indicate movement toward the target. So, how do you evaluate the effectiveness of your technology intervention, with fidelity, that all important term that is confounding educators as they strive to find the most effective intervention?