Monday, April 25, 2011


A couple of rounds ago...I thought my throat felt rather strange...but maybe a virus. Then, last time, my mouth and tongue were really sore after...but maybe too many salt and vinegar potato chips...though I was getting suspicious. Well...major mouth think I know! Anti-PD1! Lucky me! Hey, just ask anybody! Brent saw a mutual "friend" in the grocery store this evening and when asked how I was (by someone who has my number, address, email, and could ask me herself, if she was inclined...but hasn't been in years!!!!) briefly reported that I was in a cancer trial and going to Tampa every 2 weeks for therapy, replied, "Oh, well at least it's in Florida!" Definitely! That's what makes it worth it!!!! Sorry...just have these moments!

Sunday, April 24, 2011

More pie....well 3/4's at least!!!!

Had another good trip to Tampa with Ruthie. Had fun with each other and people watching. Pretty bad traffic and full flights, so no getting an earlier one on our return...due to the holiday I guess...but amazingly little traffic in Atlanta and on our way home on Friday night. We enjoyed dinner together at the Columbia again...Brent's tostones are still the best!! Had a really nice and skilled nurse! Sticks were done in the most pain-free manner possible! Weber popped in while I was in the office to see the nurse practitioner...he was full of info...though unexpected as he was and as excited about all manner of things as usual, I'm not sure Ruthie and I were able to absorb all the info...but the gist = My rash is indeed due to the drugs and is to be expected. I am apparently less tired and achy than most. The cohort of the trial that I am in has filled its 30 patients and has now begun to enroll the 30 that will be getting the 3mg/kg dose. One person in that cohort has already had to be withdrawn due to inflammation of the optic nerve and partial blindness that seems to have resolved with the discontinuation of the medication and steroids. Weber is really hoping that that was an isolated event otherwise the cohort of 3mg/kg will be stopped and the one for 10mg/kg will never begin. There is also a group of metastatic patients who, as best as I can tell, are getting my exact same treatment of 1mg/kg anti-PD1 and vaccines. 2 of those have remained stable and 2 have shown regression of disease...unfortunately I don't know how many patients are in that group nor how any others are doing. So....I will be seeing Weber on my next visit and will try to make more sense of things then! OH! I did determine that if I remain in the study for the every 3 month infusions of anti-PD1, I will NOT have to return the very next week for leukophoresis! I am very glad of didn't make me feel so good last time. I will have to have it once more at the end of this 3 month session, but that will be the last one!

We had fun at a Chinese restaurant with the Roo! She survived Hell Week at GT, where they, as most other schools, spent last week, administering their last exams, assignments and presentations before finals. This week is study and last classes before finals week which follows. She was a cutie patootie as always and kept us laughing.

Once home, Brent had created a special surprise. There were hanging baskets of petunias for us both and a special pie!!!! It had a perfect label saying: Special Celeste 3/4 pie! You are mostly done! Inside, was indeed, 3/4 of a yummy apple pie! Is Bent the sweetest ever?!!!! Being mostly done is good indeed.

This round of drugs has made my aches return, though not as bad as they have been at some other times. The rash remains as is and my legs are fat and red and hot! But, Brent and I took a little run and walk together and did about in the yard this weekend.

Hope your legs are pale and cool and your pie is mostly done!!! - c

Monday, April 18, 2011

Pi girl!

I like pie, but Rosie is the Pi girl, even though she likes cake!! So proud of Roo...she ran in the pi race at Ga Tech this past weekend and did GREAT!!! So proud of her!!! Brent and I had fun with friends at DeKalb Market and the Botanical Gardens in Atlanta on Sat. Planted lots of plants Brent grew "from scratch" on Sunday. We'll see how they do. Plus, we did some fun cooking with our DeKalb Market goods. Feeling ok. Soooo tired of sore legs, itching, smelling bad, tasting bad, and feeling tired. Finally feeling a bit better except for the that only means one thing....time to head back to Tampa!
:>( Oh, could be worse!
So....go ahead...let them eat cake...or pie! c

Sunday, April 10, 2011

Good weekend!

Made the trip to Tampa with Ruthie on Thursday just fine. Security wanted me to be X-rayed coming and going so I "opted out", getting the pat down instead. Explained my reasons, too much radiographs as it is, hoping to be allowed to go through the metal detector...but no. Attendants nice enough about it this time...but anyway... Had a good dinner with Ruthie at The Columbia on the way to our hotel. The office visit the next morning was fine...unremarkable. Had IV started with no troubles and THE BEST SHOT GIVER ever!!! The nurse did a great job with that and was very efficient with getting everything going as well. We got out right at noon, had a nice salad in a pretty patio area at the hospital, made it to the airport around 2:30 so we got an earlier flight back to Atlanta and the Roo. Rosie looked great and took us for AMAZING burgers at the Vortex. Yummy with great conversation! Ruthie and Rosie make everything fun. Back home just fine. Poor Ruthie drove back to Prattville on Sat. Then the Fred Man came in for a visit that afternoon. He vegged out with me while Brent worked on Sat night and helped Brent with chores this morning. It was so great to get to visit with all my peeps! I puttered around the yard, repotted some plants, just stuff. Bent is fixin me some supper now and everybody is back home safe and sound. Thanks for sharing your weekends with me! - c

Friday, April 1, 2011

A poem of comfort and sound advice......for you

Desiderata By: Max Ehrmann

Go placidly amid the noise and haste and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; and listen to others; even the dull and the ignorant; they too have their stories.

Avoid loud and aggressive persons. They are vexations to the spirit. If you compare yourself to others you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble, it is a real possession in the changing fortunes of time. Exercise caution in business affairs; for the world is full of trickery. But let this not blind you to what virtue there is: many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially do not feign affection. Neither be cynical about love; for is the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly to the council of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune; but do not distress yourself with imaginings; many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars. You have a right to be here. And whether or not it is clear to you, no doubt, the universe is unfolding as it should.

Therefore, be at peace with God, whatever you perceive him to be, and whatever your aspirations in the noisy confusion of life, keep peace with your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.