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6 months!

6 months today since I have smoked!

Day #10

Doing good. Today is day #10 of me not smoking.
The absolute hardest time, when I really crave one, is after dinner.
After any meal I want one, but dinner is the hardest. My new addiction:
Yogurt covered raisins ;-) Very yummy, and I don't have to step outside to have one.
Monday night, I will sleep over at the Baumanns house, and then bright and
early Tuesday, we head to the airport, for our annual visit to NIH. It will be me, Craig & Garrett Baumann traveling together. Wednesday & Thursday will be MRI's, etc. I have an appt in the vision clinic, I hope I can talk the eye doc into updating my glasses prescription.
Craig & Garrett will head home Thursday night. I will be admitted to the hospital for surgery Friday. Don't worry, it is a minor surgery. Dr. A is going to remove this annoying, bothersome tumor on the inside of my wrist. Geo arrives Friday evening; they have a room reserved for him at the Safra family lodge, on the NIH campus. I heard it is nice, anybody been there?
If everything goes smooth (it will) I will be discharged Saturday, and we shall fly home. See ya next week ;-)

More on Zyban

So, my cigarette cut off date is January 19th.
I'm just supposed to taper off until then,
since I can't/haven't/or-just-wont go the cold turkey route.
I'm doing well on that, today I have had 1 and 1/2 of a smoke.
It's evening, normally at this time of day, I've had 8 or more.
Breaking my own personal rule,
"assume nothing, question everything", I allowed
myself to be under the assumption that this Zyban drug
has Nicotine in it.....makes sense right?
WRONG! It has zero nicotine in it. Zip. Nada. Ziltch.
It is an anti-depressant! They use it in non-smoking programs,
to curb the irritability, depression, frustration, etc., etc.,
that people trying to quit experience.
Ok....how is an anti-depressant going to help
me quit? Won't this just be going cold turkey,
with the giggles?? WTF?
When I got the Rx, the pharmacy told me,
"you really can not drink with this medication".
Well I know that! You aren't supposed to drink
while taking ANY medication. You know I
always do, I drink a minimum of 2 beers a night
but usually much more, regardless of whatever med I am on.
Yes I know, but spare me the lecture,
I'm just being honest, even if it does reveal my weaknessess.
ANYWAY....they are serious, you really
can not drink with this med.
Friday night I drank maybe 5 beers,
and woke up Saturday morning with a horrible headache,
the chills, and my whole body was sore.
(don't say hangover, that is a joke, I have to drink WAY
more than that to get anywhere near a hangover)
That lasted all day Saturday, and then I could not sleep.
Now, Sunday evening, the headache is gone,
but my body still feels really sore.
One of the listed side effects are "Flu-like" symptoms.
Good description. Clearly, the alcohol enhanced that.
And today my Zyban dosage doubles.
Wonderful.
No more beer? Maybe I will have 1 beer,
just 1, before I go to bed.

ZYBAN

I start Zyban yesterday, it is a smoking cessation drug.
Before my insurance would approve the rx, I had to show proof
that I am participating in a smokers-cessation-support-group.
So I joined a phone support group. Hello?
A PHONE support group?? Anyone else see the humor there?
Actually, my program counselor seems pretty cool.
So far I have had one 30 minute session with her.
Geo answered the phone, and gave her a brief tutorial
on the Captioned Telephone, now she is a pro at it,
and we have another session this coming Tuesday.
Wish me luck on this journey!

Happy New Year - 2012

Wow! 2012! Where has the time gone??
I am 44 years old.
In New Years of the past, I have always wished for
happiness, wealth, prosperity, success or some material thing that I coveted.
Hands down, there is no greater gift than Good Health.
(it only took me 44 years to "get" this lol)
If you have good health, any of the other things I mentioned, are more attainable.
Happy New Year everyone, and I wish you, and myself, Good Health for 2012!

Inconclusive (hate that word!)

It all started with a routine PAP smear,
in which the gynecologist noted that the Lymph node
glands in my neck, were "grossly enlarged".
(not good for a person with Lymphoma -
even if it is in remission)
So, Dr. Zu, my oncologist, ordered a PET scan,
to see the status of my cancer.
(PLEASE don't be back Cancer, I do not want you here!)
The PET Scan was inconclusive. WTF?!
Dr. Zu is "not convinced the cancer is back" BUT
is "concerned about my enlarged lymph nodes"
He said we will give it a month or 2, and if the swelling still exists
He wants me to have a biopsy ;-(

OG GATHERING 2011

October, 2011 OUR TRIP TO OHIO
Oct. 6th - Thursday:
Our journey started from the San Diego airport, to Ft. Worth, TX; where we changed planes, and met up with Jodi Berlin! The 3 of us (Me, Geo & Jodi) sat together on the next flight, bringing us into Ohio. Party in the sky!
Thursday evening:
The Lees' picked uo Geo & I at the airport, and took us to their home, where we would stay the night. We gathered around the table for a nice homecooked meal. Present were;
Steve, Phyllis, Mary Davis, Mike Pupa, Jamie P, Marie Drew and last but not least, Fuji!
(The very friendly family cat - Meow!)
Friday noon:
Quite a few of us were already here.
We had a pizza lunch in the Drury dining room, and then set up the conference room. Setting up the conference room was a blast! There were 10 volunteers, with assigned tasks. Everyone worked together to decorate the room, and give it that "International flair", which was the theme of the OG this year. Working side by side with fellow NF2'ers was empowering and left me feeling very accomplished, and the OG had not even begun yet!
Conference room highlights:
The Map:
A large map of the USA, with map tacks denoting all the different states people at the OG hail from. As people arrive, they "tack" their home on the map. Cool!
The Memorial Board:
A display with all the names, many pictures, and hand written sentiments for the fallen NF2'ers, draped with Butterfly lights ;-)
The Quilt:
On display, was the quilt. What quilt you ask? I think it was about 2005 that many crewbies participated in making/decorating squares of material, and Carol Winarski (Winny)
sewed them all together to create a beautiful quilt! We then raffled it off, with the proceeds going to Advocure. The Swafford family won the raffle, and brought the quilt for display.
(thank you, I was dying to see the quilt!)
OFFICIAL OHIO GATHERING 2011 START
5 pm - Friday evening:
Crewbies started showing up!
5:30 we all gathered for an informal free hot dinner in the hotel dining room.
(gotta love FREE)
As people finished their meals, they meandered back over to the conference room, for reuniting with old friends, making new friends, and catching up. It was sooo kick back! relaxing, to just hang out and visit with NF2'ers.
Plenty of hugs to go around!
7:30 - Friday night - eating contest!
This was a feeding frenzie of chocolatte pudding and whipped cream, with a $25 prepaid visa card as the prize! It was fun and messy!! Teams of 2 competed, the teams were: Me & Geo, Steve & Mike P, Heather & Claudia, Tracey S & (son) Kierman, Beth H & Brenda C, Kim M & Kathy. Geo & I won, but it was close, Heather & Claudia almost had us! I will refrain from telling you what that much pudding does to a guy!
After the contest, the conference room was a buzz with NF2'ers mingling, socializing, and just hanging out with each other. Lots of laughter, many hugs, and much love filled the room.
Saturday Morning 9:00am:
Our group ate breakfast in the Drury. We pretty much took over the dining room,
for more free food! And more new faces as people were STILL arriving!
(For the following events, C.A.R.T. was provided.)
We had a memorial for Rachelle Swafford. Many people spoke of her. It was a celebration of her life, it was heartbreaking yet uplifting. Her parents and her sister and brother in law were there. A $260 donation was contributed
to CTF, from us, in Rachelle's name.
Dr. Welling, from Ohio State, gave a presentation focusing on drug therapies, etc.
He had slides to show us but was unable to, as there were technical difficulties with the equiptment. He took questions from various people in the audience, and answered in laymans terms. (english!) His presentation was very informative.He seems to be a very nice and funny man!
Saturday lunch:
Most of us caravaned over to Chipotles; a deaf friendly Mexican Grill, close by. Again, I think our group pretty much took over the place. How often are "normal" folk the minority, while NF2'ers rule the majority! So cool!
Saturday 1pm-4pm:
Half the conference room was set up as a theator area where many people watched a captioned movie. The movie was RIO. I did not watch the movie, but I did munch on the pop corn!
During the movie, I spent my time in the other half of the conference room, just shooting the breeze and visiting with different friends.
Saturday - 4:15 Hot Tub
Jimmy Jackson, Doug, Me & Geo, Jodi, Mary, Katie, Shanna, Mike P, Megan, and a few others, whose names I am surely forgetting, hit the hot tub! It was fun! Jimmy said it had been "20 years since he went in a tub", this will make for a classic memory.
Saturday Supper - 6pm
Dinner was in the conference room, and was catered, and was delish!
After dinner a pinata was placed in the center of every table, where people could whack it, while remaining seated. (NF2 friendly style)
We had a dress Jimmy contest, where people brought different, kooky items to dress Jimmy in; like weird hats etc. Again there will be some classic memories from that. Jimmy is a good sport!
Group photos! People had been snapping pictures the entire weekend, but this was a chance for the whole group to pose together for our group shot. I had not realized until that moment just how many we were! This was a huge turnout!
Breakdown: 30 PEOPLE WITH NF2, 24 PEOPLE WITHOUT NF2
for a total of 54 ATTENDEES, including 10 volunteers.
States represented: PA, UT, OH, MI, TX, CA, FL, SC, IN, MO, TN, NY, MS, KY, NJ
Saturday late night:
The conference room closed at 10pm, and most people called it a day, and retired to their rooms. A group of about 10 of us "die hards" wanted the party to continue!!
So we ended up across the street at a local sports bar, where we sat outside in the patio area (which, again, we took over lol) It was fun!
Sunday Morning:
Another hot, free breakfast surrounded by NF'ers! Can't beat that - I want to do this every morning! I love this hotel! It has a great open dining room, and breakfast is served buffet style, all you can eat, and did I mention it is free? The conference room adjoins the dining room, so you don't have to trek through a huge hotel (hello MGM) to get there, it is just next door. Very cool and very accessable.
Sunday - 10 am-10:30:
Devotional led by Clay & Gladys Bell, in the conference room. This was a gathering of
about 25 people for prayer, sharing, and unity. I did not attend, so I can't relay the details of it. I was on the other side of the room, entrenched in conversation, I could see the Devotional group tho, and it was apparent that they were thanking The Lord for the many blessings we share.
Sunday - Farewell Everyone:
The conference room would be closing by noon, and most attendees would be rushing off to the airport, or embarking on the road. Is the OG really ending? Is it really time to say "good bye"? This weekend went by way too fast, I was just getting started ;-)
This was my 1st Ohio Gathering, the first of many I hope. As a veteren of many NF2 "cons", I must say, this was the best NF2 event I have EVER attended. Hands down - no contest. The entire weekend was relaxing and so laid back. The backdrop; The Drury Hotel, was absolutely perfect for us. I am already pestering Geo about next years Gathering, I hope we are lucky enough to attend.
Saying good bye is so hard. It is bittersweet. I refuse to say good bye, I will just say
"see you later". A qoute from Jimmy Jackson, which says it all,
"I need these Gatherings, you guys are my rock." I agree, I'm pretty sure we all do.
After the Gathering:
Jodi, Mary and I, hung out at The Lee's house, while Steve, Geo & Mike P, were breaking down the conference room. Phyllis was playing "taxi", driving people to the airport, which later, included Jodi. So Mary and I hung out and visited. Kind of ironic, because I "met" Mary online in an NF chat room (mostly NF1 people) back in 2002 or 3. I was already a Crew member but I had not spoken to anyone; she "introduced" me to Jimmy and the AIM chatrooms, and the rest is history. So it was great to meet Mary face to face, after all these years!
Sunday Night Supper at Roosters:
Steve & Phyllis, Me & Geo, Jamie P, Marie Drew, Shanna, Sylvia, Mary & Earl,
all got together for dinner and conversation at a very casual Bar & Grill called,Roosters. It was great! Although we did not take that place over as our group was much smaller then previously. Then, more "good byes"...er...I mean "see you laters".
Back at the Lees' house, I finally get to pick Phyllis' brain. I think the guys went to bed, meanwhile, us girls sat up pretty late talking. I really enjoyed talking to her. This was the 1st time we ever met. I can't wait to meet again!
Monday morning:
We spent the night at the Lees' house. Geo cooked breakfast, (no, not pudding!) French Toast & Bacon. Soon we will be heading to the airport, that is a bittersweet thought. The Lees' home is so warm, inviting and comfortable. My spirit feels renewed.
The weekend left me feeling energetic and happy.
It is almost impossible to convey with words, the feelings that the gathering left me with.
If you were there, you know exactly what I mean. If you were not there, you should have been! I will be riding the wave of these positive feelings for months, I must admit tho, I have a touch of P.O.B.S. (Post Ohio Blues Syndrome) Again, those that attended, know exactly what I mean. See ya later.....KC....bark~!

Green light!

I saw Dr. Zu, my oncologist today,
and he gave me the green light for another 6 months.
Go me - remission rocks!
I brought Heyzeus with me to the Cancer Center,
and I am soooo glad I did. I was hoping to meet the 2 ladies with the Black Lab sisters, but they weren't there today ;-(
My visit with Dr. Zu only took about 10 minutes.
Afterwards I asked the head nurse if we could go hang out in the treatment area and visit. So we did. I was unsure what to do really,since I am not really able to hear the patients, and my eyesight is so bad...
you know, not everyone wants to be approached by a dog......
So we just walked s-l-o-w-l-y thru the treatment room (which is just a 50 foot room of recliner chairs with patients sitting, getting chemo) and one of the patients gestured out to me, well to Heyz really, lol.
And there it began, we fluttered from one person to another, holding out their hands, towards Heyzeus,
wanting to pet him. As we were making our way thru the room, I was tapped on the shoulder and told
"they want you over there". That happened 3 times;
3 different patients wanted to touch/visit with Heyzeus.
I was floored. None of the patients were speaking much to me, but they seemed to be pouring out their hearts to Heyzeus.
I have been there. I know exactly what it feels like to be sitting there, all hooked up to tubes and just ALONE. It takes your thoughts to some very dark places. Its scary. That is the position I was in when I met the Lab Sisters, all of those dark thoughts evaporate from your mind while your nuzzling a dog.
At least for me that is how it was....this was the place where I had my chemo, and the nurses took very good care of me, today I felt like I was giving something back, and Heyzeus helped me give it.
bark~!

KUSI Sement on Facial Paralysis

If you have not seen this already,
check it out....
http://www.kusi.com/story/13688828/making-you-happy-one-smile-at-a-time

Thanksgiving 2010

Thanksgiving was good!
This was the first time we "hosted" the family meal
at our house, our new home. ;-)
It was great!
Geo's sister Marsha and her hubby Doug were here,
along with Geo's Dad.
I cooked an "Upside Down Turkey".
Dad had me all worried and anxious about that
but I must say it came out excellent.
Very moist and tender.
I will defiantly use that recipe again.
Next up: Christmas.
Unfortunately, we are not doing it here tho,
Marsha will host it at her house,
in Lakewood, in Los Angelas.
We agreed to switch off every year,
next year she gets Tday, and we get Xmas.
Sounds fair to me!

BONEHOUSE

We have moved to San Marco,
a city in the county of San dIEGO.
i am in paradise here! The past week has been a whirlwind; productive, exhausting and chaotic!
i have never lived in a house like this, i keep getting lost in it lol. When the guys were moving boxes in, i had marked them all,bedroom, bathroom, etc; they started teasing me..."which bedroom,there are 4! which bathroom, there are 2??" lololol!
I think i said b4, its a 3 bedroom, Geo corrected me on that, it is a 4. There is so much closet space, with shelves, A huge walk in closet in our bedroom, We are keeping all 4 cats in what i call "the lions den", until they get acclimated to being here, they are still a tad freaked out. That room is huge, it is actually 2 bedrooms, it was made into 1 room, Geo will turn it back into 2.
So that is also Dads room, he loves the cats, and its mutual.
i have a laundry room! Wait until u see my pantry, its huge! i am loving the kitchen, i never had a garbage disposal, or a dishwasher, now i have both. ;-)
it has a smooth top oven, its electric tho, cooking on that is a tad different, but so far i like it.
There is a 'kitchen nook', like a sitting area in the kitchen, which i really like.
The living room and dining room is hardwood floors, not laminate, real wood, its beautiful.
One entire wall of the dining room is a double sized sliding glass door.
Geo has a dining room table for that room, we just have not set it up yet. There is bunches of stuff to do yet.
It has a fireplace, i so missed having a fireplace, i just really like them.
It has a double door entry, with a foyer. We dont even have enuf furnishings for this house, but thats ok, ttat will come. ;-)
Did i mention the pool? Heyzeus and i have gone in every morning since we been here. He loves it AND the additional benifit to that is it totally tuckers him out, which is great, he has alot of energy, with him tired i can get 'stuff' done.
There is a park 1 and 1/2 blocks away, another one 3 blocks away in the other direction. ;-) Acroossbthe street is a park! These are not public parks, they are private property, for the residents of this community. They are all intertwined together, wth walkways, well lit, doggy waste stations, etc....
i have not gone exploring the nieghborhood much yet,
and today is the 1st day i went online, i am busy 'nesting'
oh! i almost forgot! Geo surprised me with a brand new refridgerater, it is a double door Amanda,
it has n ice maker on the door, u can choose cubes or crushed ice or cold water. U don't even have to add the water, it does it all by itself, lol, this is probably old hat to some of u, but i have never had a fridge like this, lol.
So far i have rearranged the food and the shelves in it several times.
I wake up every morning here grinning, we both do.
i am just in awe that this is our home, like pinch me u know?? ;-) i feel very blessed. This was certainly worth the wait. im so very excited still.
OH! Geos commute to work? its about 10 minutes now, thats a major plus, it changes his entire day, bf his commute was about an hour.
i could go on and on! but that enuf for now ;-)
happily barking...KC

Tough call...

So, I have been to NIH, in Baltimore, MD,
twice now. Both times I was so impressed by the
entire staff there.
The 1st time I was there, the doctor at the eye clinic,
determined that I have a large cataract in my left eye.
So, I went to my eye doctor here, in San Diego, to have
cataract treated/removed. Both doctors agree that removing
this cataract will greatly improve my vision.
HOWEVER, there is a very small risk (5%) that the procedure
may not be successful, and could cause immediate
(irreversible) blindness.
No big deal right? After all, it is only a 5% risk,
with a 95% success rate.
Those are good numbers, that is a tiny, minimal risk, right?
Not to me. I am completely blind in my right eye.
So that tiny risk seems enormous to me.
I don't think I want to chance it. I would love to improve
my vision, but....not at the risk of losing the vision I have left.
The eye doctor also said that,
"yes, leaving it be is an option, BUT you are risking eventual
blindness by doing so."
WTF? "eventual" or "immediate"
What would you do?

gotta love beer!

WHO KNEW? ;-)
CHEERS EVERYBODY!
Beer Inhibits Tumor Growth
CORVALLIS, Ore., Nov. 7 (UPI) -- Research at Oregon State University shows that beer contains a micronutrient that inhibits cancer-causing enzymes.

The compound, xanthohumol, was first isolated by Oregon State 10 years ago and an increasing number of laboratories across the world have begun studying the compound, said Fred Stevens, an assistant professor of medicinal chemistry at Oregon State's College of Pharmacy.

The substance comes from the hops plant used to give beer its aroma and flavor, ABC News reported.

Most beers made today are low on hops, however, and so don't contain much xanthohumol. But beers such as porter, stout and ales have much higher levels of the compound.

Mice studies show that the compound is metabolized quickly by the body, so it's hard to get a large amount in the body at one time, Stevens said.

"It clearly has some interesting chemo-preventive properties, and the only way people are getting any of it right now is through beer consumption," he said.

http://www.kentd.com/index.php?option=com_content&view=article&id=99:beers-good-for-you&catid=1:latest

Just Stuff....

I saw Dr. Zu (my oncologist) the other day,
not only was the cancer non-evident in my bloodwork,
he feels no need for me to have any future PET Scans.
I will go for bloodwork every 6 months, but otherwise I am
done with the whole 'cancer chapter' of my life.

I got, and am wearing my BTE ABI.
So far so good! The sounds are better with this thing.
The other day I was zipping up the zipper on a back pack,
and I heard the zipper! I haven't heard a zipper in years!
I forgot they even made a sound.
And it sounded just exactly like...a zipper! LOL
Needless to say, I sat there zipping and unzipping for a few
minutes. ;-)

Geos dad is staying with us.
His name is also George,
so I will just refer to him as Dad.
And no, if you are wondering, my Geo is not a Jr.,
he is the 3rd George in the Sotier line ;-)

EASTER WEEKEND

I finally got my BTE ABI in the mail from Cochlear,
geeez, they are slooow!
Anyway, Monday I will sent it off to Steve Otto for him to program
and once I get it back, I will be wireless!

We are going up to L.A. tmw, for Easter dinner at Marshas house. (Geos sister) Then when we come home we will be bringing Geos dad home with us,
and he will stay here indefinitely.

HAPPY EASTER EVERYBODY!

Guess what I got in the mail today.....

My insurance sent me the approval for my BTE ABI.
It has only been 10 and 1/2 months.
(do the math, that is 311 days)
I'm stoked!
And yes, we are talking Medicaid/SSI.
After a denial, they are covering it.
Amazing.
If you too, are covered by the state,
and are hoping for the upgrade;
don't give up, jump thru whatever hoops they throw at you,
deal with the red tape,
and keep the prize in sight!
bark~!

NIH - Wednesday

I am typing this from the computer room at NIH, in Bethesda, Maryland.
NIH is huge, it is like a little city.
The internet connection and computer use is free to all guests here at NIH.
Gotta love that.
The weather? Well outside it is cold (26 degrees last night) but I have spent the entire trip
lugging around my down jacket. I packed sweaters, scarfs, hats, gloves, etc.,
for this venture into the tunda, and I have used none of that!
Every where we have been is heated; the hotel, cabs/shuttles, and of coarse
NIH is heated. So every where I go, I keep wishing/asking people to
'please turn down the heat" I hate heated air! So much for freezing..:-)
Yesterday I had 2 MRI's, uneventful. Today I go to the eye clinic
and then later I see an ENT, no idea for what. I got to admit,
I love all the medical attention, from people that are actually familar
with NF2. These people are very knowledgeable about NF2,
so not having to explain it every 5 minutes, is very nice.
Last night we ate at Hard Times Cafe (thanks Olivia;-))
We enjoyed it!

IHSS Decision

I won! Was there ever any doubt? YES...
I was totally stressing on this situation,
so glad I won, and that it is over!

Frustrated....

why haven't I gotten a decision yet??
I am beyond frustrated on this.
On 12/01, they mailed me all my original documents that I had presented
at the hearing. That was sent to me by the supervising social worker that represented the county, and was present at the hearing. In that correspondence, she included her business hours and her phone number. So yesterday, first thing in the morning, I called her, got her voice mail and left a detailed message, inquiring about the status of my appeal.
I left my phone number, Geos phone number, and my email address. Did she reply?
Hell no! wtf? Wtf did she bother to give me her contact info...?
Like I said, I am beyond frustrated.
No mail tmw, it is Sunday.
Maybe Monday....cross your fingers!