PPP = Pinky Pink Power Women...or...

...Perky Peptide Patient with her Perky Peptide Posse!! the story behind the Tee's:

Last time Ruthie and I were down to Tampa for my treatment, a nurse other than "mine" came in to deal with my IV pump that was beeping and while she was working on it "my" nurse came in as well. The first commented to the other, "She is always so perky and smiling." My nurse said, "Yes...and she's a PEPTIDE patient!" They left the room and Ruthie looked at me..."You're a perky peptide patient!" I said, "Well, you're the Perky Peptide Patient's Posse!" And so the Perky Peptide tee shirts were born!! During her break between semesters Rosie made us cool Tee's, with an added bonus. On the back of mine is: TROUBLE. But on Ruthie's it says: DOUBLE. She made Brent and Fred shirts as well. Fred-0 just has PPP on a sleeve. Bent's has PPP on a front pocket, but "I'm with Trouble!" on the back! We had fun with them. Funny thing....nobody thought they were inappropriate!!! Rosie had hers on to celebrate the next to last peptide (vaccine) treatment with us when we stopped by her dorm in Atlanta to take her to supper after my treatment. LOVE MY GIRLS!!!! (Brent and Fred were wearing theirs too, when we got back home later that night!!! Such cool boys!!)

May your posse be pink and powerful like mine! c

Munchkins home again.....

It has been a crazy, wonderful week. Got to be with Roo! Then went to K'ville to help Fred bring his stuff home for a bit, on Wed. Rosie got to see some of her friends graduate with honors!!! Go Justin and Dania!! Had fun with the kids...even special birthday cake ("SPECIAL" because it wouldn't come out of the pan!!!!...but it did taste good!) on Friday with a mutual b'day for my now 19 and 21 year old babies!!! (Though Fred won't technically have his birthday 'til June 11...we went for it while we were all together!) Had to deal with car repairs, a dead Rosie computer, and take doggies to the vet...but I had good helpers for all of it and all machines and pooches are running fine again. Brent and Fred did a marathon fix on a new computer for Rose. Then...it was packing Rosie back up. Fred was a trooper and did most of the hauling. We all went down to Atlanta today to get Rosie ensconced in her new place. She is so excited to have a bedroom of her own, share a bathroom with only one other person, and have a kitchen and living area she shares with four girls. We got it all purple and stylin'!! Fred got the computer going and Brent saved the day, running to Target for towels that had been forgotten and a step stool for the tall kitchen cabinets. We are missing our Rosie already, but will get to have some time with Fred for a couple more weeks!!

Was pretty tired through Wednesday...though with Rosie's enthusiasm and cheers managed to jog about 2 miles each day. Have also been working out on a new elliptical. Our 'beastly' one finally died the last time Rose was home. The pedal just sheared off while she was using it! The new one is TOUGH! Still trying to find out what "BEAST MODE" is on it...but my new number is making it to 115 in 15 minutes. We'll see how I do...

"But time makes you bolder and children get older and I'm getting older...too. So take this love and take it down. If you climb a mountain and you turn around...and if you see my reflection in the snow covered hills well, the landslide brought it down....well maybe.....well maybe..."

May your landslides be soft and gentle....c

The beautiful Roo!!!!!!!!!!!!!!!!!

Have you ever seen such beautiful ROSES?!!!!!



Running through the irises!

Another day, another hair dude!

THE VERY BEST GIRL A MOM COULD HAVE....and Karma too! Love you, Rosie!!!!!

The change begins....

My girls!!!

Locks of love....here we come!

Tampa...by way of Nashville

We started this trip to Tampa a little early and a little special... Ruthie came up on Wednesday and we took off for Nashville, since Kik would be there as a speaker for the ADL. We got in that afternoon and had a great visit and dinner with her! Thursday morning we got to go hear her speak in person, before we all headed to the airport, where Kik went home to Houston and Ruthie and I went down to Tampa for fun, merriment, and relaxation!!!! It was great to get to spend time with both of them!!!

Chillin' in the garden!!
The speaker with the mostest!!!
Ardent audience members!

The Tampa adventure went ok. Dr. Weber informed me that I am the second person in my cohort to get mucositis (irritation to the mucus membranes). We did learn that all but two patients, who had rapidly advancing disease early on, in my group are still in the study, now 9 months out. (Poor people!) Even the group with my treatment and non-resected disease seem to be doing fairly well. We did not learn any more about the 3 mg/kg group who, 2 weeks ago, had only recently begun with about 8 patients enrolled at that time. We were told last time that one patient had to be withdrawn because of extreme vision loss due to inflammation of the optic nerve that had been improving with the withdrawal of the medication and steroids. Anyhow, no new news about me. IV went well. Injections were a bit sketchy and painful with large amounts of my elmer's glue peptides leaking back out of the injections sites! Makes you wonder why you must go through the pain of the injections if you don't get the full dose!!! Anyhow, got that done, made our way back to the Tampa airport, the Atlanta airport, the Nashville airport...and then we drove home! Rosie and Brent were already there to greet us since Brent had gone down to Atlanta and picked up the Roo and all her stuff for her week off between semesters!

Saturday was Rosie's birthday!!! My baby girl has been with me for 19 beautiful years! I can hardly believe it!!! Her Aunt Ruthie was super cool and gave her an amazing hair dude before she left us on Saturday. Pics to be posted later!!!!

Happy Mother's Day! c

To all of you.....

...who said, "Why didn't you tell me?" OR "I never knew..." Yes, you did. Right here. I threw it out there. And...you all knew it was here...just never bothered to look. You could have shared your thoughts. I would have liked that. But... Then there are those who always did. You made my day...everyday. Much love - c

It's been a(n) ______________ year!

A(n): amazing year? hellacious? horrendous? incredible? beautiful? awful? wonderful?

Not sure how to categorize it really...can hardly believe it's been just over a year since Rosie helped me create this blog and exactly one year ago today that I woke up in the hospital with tubes everywhere! What is one to think about a year filled with brain zappage, lung removal, dear friends, high school proms and graduation, babies who are basically seniors and sophomores in college, and tonsil surgery, experimental drugs, San Francisco, the love of my life, the best fun with Ruthie, a wide variety of pain, getting to be here at all given the odds, and a beautiful spring with others in pain from storms and loss?

It is still a beautiful thing. Love to you all - c