Wednesday, November 23, 2011

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 ;-(

Saturday, November 5, 2011

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~!