Sunday, November 27, 2011

My children are INSANE!!!!!

Insanity workout with Fred-o while Rosie did the elliptical!!!  They are two tough cookies!!!  Such a great long weekend with them...bout to head out to Wally World for needed supplies and then back to Hot'lanta and K'ville respectively. Gonna miss'em SOOOOOOOOOOO much.  Love you both!!!!!!  Take care of my insane babies!!!! - mommy

Saturday, November 26, 2011

Good luck, Steven!!!!

Please join me in wishing the very best for a friend I met in melanoma world who is being inducted into his first IL2 treatment today!!!!  Hope it goes as easily as possible with great success!

I've been having a good time...first with a visit with Rosie in Atlanta after work on Wednesday, and then we all managed to converge here at home on Thursday morning.  It's been great to have time together ever since!!  Good food.  Good laughs.  Great insane work-out with both kids yesterday!

Hoping all of you have been able to enjoy time with your loved ones as well! - c

Sunday, November 20, 2011


....except for the family fun! With Brent's help we've done all the shopping and the wrapping. What with Thanksgiving this week, scans next week, Tampa the next, picking up the Roo the next....well...the schedule got a bit tight! Anyhow, it's done now and I can just chill and enjoy the ride. Did insanity and the elliptical and enjoyed friends along with fun with Brent and a little yard work this weekend. Just had a nice dinner of pork chops, baked sweet potatoes, and green beans with a delicious Cabernet Franc from Spann Vineyards in Sonoma with my baby. Soooo yummy! Thanks, Bent. For everything. - c

Friday, November 18, 2011

Factors that influence survival at time of stage IV diagnosis per Atkins

Still missing the talk that went with the slides!  But, it a different kind of melanoma in that subset of patients around the facillity....or do we all just need to make a run for M D Anderson?????

Slide presentation of treatments for stage IV melanoma by Sosman

This is the take from the guy at Vandy:

Be yourself.....

....because somebody has to....and you're the closest!  Just Only John


Be who you are
And say what you feel,
Because those who mind
don't matter -
And those who matter, don't mind!  Dr. Seuss

For all those frogs out's not easy being green!   Just keep doing it...with style and a smile!  Have a great day! - c

Monday, November 14, 2011

Saturday, November 12, 2011

Gotta love Vince!

Last night, Brent and I attended the Vince Gill charity concert he does each year for the Children's Advocacy Center here in Chattanooga. (A group that provides services for victims of child abuse that Brent helped start here.) And we were in for a surprise! Vince came with Emmy Lou Harris and Rodney Crowell! Just the three of them...sitting on stage with their guitars. While it was not the polished, smooth performance given last year when Vince performed with his band, it was amazing to see such successful lead performers play and sing back-up for each other...and just have an almost impromptu jam session right in front of you. Super cool and for a good cause.

Brent joked before we left the house that we had a much better dinner before heading out than we had last year...steak, black beans with garlic, broiled tomatoes with Parmesan, and an avocado salad...since I was still on pureed slop due to being only days post a melanoma induced tonsillectomy at that time.  When I mentioned this, Kik responded that she hated that so many of my memories were marred by unfortunate dealings with melanoma.  I know she is the sweetest, advocate for me and meant only that she hated what I had been through...but it got me thinking.  That is really not how I look at the past 8 years of my life.  Brent and I had a wonderful night last year and experienced music that has colored this past year beautifully.  He was dead set on going this year because of that. I mean it when I say that Ruthie and I had SOOOOOO much fun on our Tampa runs.  I had such an incredible day, watching Brent snap pics of Rosie and her friends before prom...which was only days before I was scheduled to have my head zapped and lung removed.  I do not have amnesia.  I remember every bit of post-op pain from every procedure.  I remember the fear and anxiety.  I remember the sadness and worry that my condition created in those I love.  Yet, while there has been plenty of that in the past 8 in no way diminishes or dims the fun I've had, the laughs (and tears) I've shared, the joy I've felt in love, the pride I've felt in my children, and the success I feel after every day. If I could make melanoma evaporate from my life and the world....I would do it in a heartbeat.  But, despite all its horrors, it will NOT mar everything...I can't let it....otherwise....what would be the point?  I know what is important.  Small pains, lumpy legs, white spots, leaking gutters, daily aggravations, and melanoma?????? A pain in the ass?  YES!  Really important in the overall scheme of things?  Not remotely. - c

Monday, November 7, 2011

Hoakey but informative ad for anti-PD1 by Curetech

Not the particular anti-PD1 "brand" that I am on...but shows the idea behind it all.  Gotta love the name...CUREtech!!!  Whatever!

Also...there is a power point from the Netherlands that covers: TIL, MEK, BRAF, and IPI if you are interested.  Hoping you can just click here to view, but you may have to copy and paste to your browser.


May the graph be with you!!! -c

Sunday, November 6, 2011

Anti-PD1 and crazy skin thing 9 zillion and 1....

Ever since my last infusion of anti-PD1 in September my skin has been flared up and irritable.  The granulomas on my thighs have remained red, hard, inflamed and itchy. Back and arms very itchy.  Bilateral inguinal nodes have remained constant (they used to come and go) with the one on the right measuring about 2cm and the largest on the left measuring about 1.5cm, followed with another of about 0.5cm, and a tiny one finishing out the trio. Vitiligo continues to increase. Just before our trip to California (10/4 or 5), during a very itchy flare on my back, I noticed a small circular patch of dry skin just below the scar from my initial lesion.  I completely forgot about it during our vacation.  But, when we returned (10/15), I was very surprised to feel a lump there. The documentation follows: 
10/15 - 8.1 X 5.5mm smooth, flesh colored, circular, domed lesion in the exact same location as the dry patch below my original excision scar.
10/17 - size unchanged, texture the same, color now = dark pink.
10/20 - lesion remains same color, size now 7 X 5.5mm.
10/21 - lesion now 5 X 5.5mm with a black scab covering 15% of the top edge.
10/22 - more of a scab has developed, size = 5X4mm.
10/23 - 5 X 3.5mm, with surface now dull and a greater area is covered with a scab.
10/25 - 5 X 2.5mm, lesion now mostly flat scab
10/26 - scab missing, flat pink macule is all that remains.
Today - Brent can find nothing more than a flat, ovoid, pink area.

So...what was all that business????  Brent was very worried.  At first he wanted me straight to derm to have it removed and analyzed.  Then, worried about being kicked off my trial, we decided to watch and wait.  Was it one of the lesions that Weber, Ruthie, Brent and the NP already observed...some inflammatory nodule often occurring before more vitiligo?  Was it a met...which I think is what Brent feels it was?  Melanoma mets can be black, or bluish, or pink, or red. I don't know.  It was truly weird and unlike the other lesions was very smooth, at least initially.  The others have been almost like a pimple or a bug bite for the first couple of days, rapidly turning brown and rough...but never with a black scab. Brent worries for this posting. But, perhaps, one day, such documentation will make a difference.  Anti-PD1 is new...and nobody is talking. Given how challenging the last infusion was, I can't say that I'm looking forward to my next trip to Tampa on Dec. 8th for infusion on the 9th...given, of course, that scans are clear on Dec 2. Then again...maybe it's still fighting off cooties and is the only reason I'm still here! - c

Great week and crazy skin thing #1...

So...last weekend was great.  Brent and I went to a local nursery and got some rhodies for the shady area in the back yard.  He dug holes and I planted them on Sunday.  Noticed that my nose was sore when wiping off dirt or Z slobber...but didn't think too much about it.  Was much worse by Sunday evening, and by Monday morning, could have done a great impersonation of Brent had me start oral clindamycin.  Worked all day Monday, but driving home was a challenge with a throbbing headache from my nose, to between my eyes (You know how it feels if you get hit on the bridge of your nose when you're wearing glasses??? that!!!), to my teeth/jaw on the left.  Ouch!!!  Got so little sleep that night that I had to call in at work.  Felt really bad about that!!  Spent Tuesday soaking my face in warm salt water.  A pretty special challenge, by the way!  Brent kept appearing to peer at my face and threaten to take me to the ER for IV antibiotics.  Anyhow, by the end of Tuesday, I could finally see around my nose and the pain was no longer oral antibiotics finally kicked in!!! Oh well...I see about 2 kids with MRSA every other Brent went through a bout himself a while we're definitely blaming him with the cooties!  The company I keep!  I need to reevaluate that!!

Back to work on Wed.  Feeling much better now.  Only the tiniest bit tender if I smash things around.

Had a great weekend.  Went down to Atlanta on Wednesday evening.  Brent attended the GA chapter AAP meeting and I read and worked on recipes and got to visit with and exercise with Rose.  Did INSANITY with her and her friend on Thurs. (You two girls are just the coolest!!)  Ran the pi mile with her on campus on Friday.  We got to have dinner with her each night and on Sat we all went to De Kalb Farmer's Market for lunch and groceries.  It was beautiful weather.  Fall has made its way to north Georgia. Lovely.

Some of you may know...but Brent is always on the look out, to provide me with a "cooking challenge".  So....when perusing the fish counter at DeKalb....he was excited to see a fish unknown to him.  Escolar...a buttery fish from Hawaii.  It looked much like sword fish and seemed very fresh.  Touted to be "white tuna".  Well....we get home.  Start packaging things up...deciding what to cook when, what to freeze.  I google "escolar".  Interesting!  It is indeed pronounced by those who have eaten it to be incredibly buttery and delicious, thanks to the wax esters that the fish stores in its flesh because it can't metabolize them.  However, within 24 to 48 hours, most people, especially those who have eaten greater than 6 ounces, have spontaneous, uncontrollable, greasy, orange, diarrhea, cramping and are generally unhappy. (The FDA-like organizations of Japan and Hong Kong have banned its sale.  Our own FDA recommended that at one point, then just decided to have no comment.) Brent thinks he can probably tolerate it with his tummy of iron, but can't get up the nerve.  He thinks that I, on the other hand, will not be a happy camper, since a handful of Triscuits can throw me a curve!!  Anybody hungry?  We've got some escolar!

Had a delicious dinner of roast lamb with rosemary and garlic, roasted rainbow carrots, and a veggie tray bake of miniature eggplants, onion, red bell pepper, and kalamata olives.  Now...that's good eats!! - c