Sunday, March 25, 2012

The Marathoners after a week of rest!!!

My Marathoners!!!!!
And to think, Bent, of all those miles we pushed them in those jogging strollers!!!!

The Morris Marathoners!!!!

Before the start.

And they're DONE!!!

B smiling as he passes us and heads to the finish line!
They did it!  And so did all those other crazy people!
Re-hashing the race.
"We were AWESOME!"

St. George...winding down...

Beauty and the Beach

My girl!
The best family ever!!!
The boys!
Mr. Heron in the bay....

...and on the dock.

It's better with friends.
And it was good.

Friday, March 23, 2012

THE Fisherman, day 2.....

Another mackerel!
And a trout!
And a pitiful little perch!
And another mackerel!
And they were delicious....grilled outdoors by the Manly Morris Men....otherwise known as: Mosquito Snacks!!!

Armies of baby crablets!!!

If you walk along the bay, armies of baby crabs, all waving their miniature claws menacingly, race ahead!

Rosie didn't like them in the shade. She did not like them in the sand.
She did not like them climbing up little blades. She did not like the sounds they made!
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But she made the trek and took the pictures for me anyway.  Cause she's cool like that!!!!!

My 1...

Bent's first Spanish Mackerel
Rosie's Cat
Skinning the cat, Skipper style!

St. George Island

Heron near the inlet where Fred caught his shark years ago!
Mr. Heron stayed with us (or more accurately, we stayed with him!!) all week.  He made very close inspections of Bent's casting and stayed with him on the pier at times.  Today, he took a walk along the bay with us.
At the park.
Beauty  among the thorns.

Thursday, March 22, 2012

St. far.... wonderful! We have a great place on the bay. Can't believe it's been almost 2 years since we were here. Our last visit was in July 2010, just before sending Roo off to Ga Tech and my return to work after lung amputation and brain zappage. Tampa and anti-PD1 weren't even on the horizon as far as we knew then. What one can do and learn in 20 months!

Anyhow, we had our nice dinner at Boss Oyster as we came into town. Monday after a run with Roo (She keeps diminishing her time and pushing my mileage!), we were off to the Pig...that's Piggly Wiggly, of course! We got our groceries and headed back. We've had morning and evening walks on the beach, dock, and bay. Enjoyed a picnic, walk, and kite flying excursion in the park. Had a regular dance-a-thon listening to Fred's i-pod last night. (It was like when the kids were little and they would say, "Mommy! Play the 'hey, hey, hey' song!", and we would dance around their bright yellow, red, and blue playroom like fools!) In between more runs and a chilly swim on the beach, Brent and the kids have been fish'n fools. They use the casting net to get their bait and then work on reeling in the catch off the dock. So far, they are doing great! Yesterday, B reeled in a Spanish mackerel and Rosie brought in a really nice cat, which was delicious as fried cat fish nuggets with our salad at lunch. After a stroll around Apalachicola this afternoon, Brent has been out catching fish like a man on fire! So far....another Spanish mackerel, a bay trout, and a croaker! Brent and Fred-o are going to grill the mackerel tonight while Rosie and I whip up a Greek salad and grits!

Earlier the kids offered their poles to me to see if I wanted to fish. "No, thanks. I've taught three people in the world to fish (and dance)! My work here is done!"

Have to give Skip a lot of credit for his help on the fishing though! Ooops! Gotta go! My fisherman has another mackerel for me!

Gone fish'n! - c

Wednesday, March 21, 2012

Stressed! Really???

So I guess I don't understand. All these folks who are stressed...or get stressed...or can't sleep cause they're stressed...or are feeling so bad because of all their stress....But then, you look at their lives...and...usually...they have money...and health...and families with the same. They are not living with hunger, war, or cancer, watching a spouse die from a terrible disease, have not lost are pretty much ok. In fact, many are very successful, like Jason Russell. His supposed goal in life was to inspire the power of the people to rise up against a terrible man. And guess what? He did it! But, then...that made him stressed....and tired...and dehydrated...and he had to run around, undressed, holding his private parts, vandalizing cars! All because he had achieved success. Dude! Next time you're tired and thirsty...drink some water and lay down for a while!

I still admire what he had to say. I think the power we all have within us, and even more so, the power we have when we work together to stop injustice, to fight disease, to end poverty, to prevent even one child from going hungry, to demand equality for all, to spread literacy instead of hate is...insurmountable....if only that is where we choose to put our focus...instead of on our "STRESS".

Do you really have to experience war, deprivation, or cancer to learn this people?? I don't think so! Come on! Ditch the stress! Embrace your strength! - c

Tuesday, March 20, 2012

My sweet J

Had her on my mind all day yesterday! This cancer crap is only easy for tough girls like us! Hope things are going well!!!! Much love and big hugs! - c

Monday, March 19, 2012

13.1 miles...cause they're only half crazy!

The kiddos were back in town on Friday evening. By Saturday afternoon we were in the middle of a super duper Atlanta traffic jam! Our downtown area hotel (and those around it) was being converged upon by St. Paddy's day revelers (all wearing green even when it was NOT their color...usually with beads and an early start on the imbibing), 6,000 Mo-mo Con attendee's (a very strange collection of folk going about as comic/video game/movie characters with pink hair, tails, masks, swords...smoking cigarettes) and 15,000 distance runners (another strange group...eating granola, donating to the local food bank, perusing organic foods and running shoes at the fitness expo)! Safe at last in our hotel...we were off to the expo to pick up the 1/2 marathon packets for my little runner peeps!

And run they did! They were awesome! Up early to make our way to the starting corrals by 6:45 in Centennial Park....and they were off with loud speakers booming Bono!

So many runners passed by me at the start that I didn't catch even a glimpse of the Morris Marathoners! But, I had a great view of each of them whirling (B especially! The kids were with me as we cheered him into the final gate!) through the lane to the finish!

Roo - Time = 1:49:53 (that's 1 hour, 49 minutes and 53 seconds for the uninitiated!) She came in 1,115 overall and was 8th of 101 in her age group!
Freddo - Time = 1:50:29 He came in 1,185 overall and was 57th of 182 in his age group! Really awesome for an 800 runner!
Benti - Time = 2:53:33. He finished up at the big 8,046 position...and was still smiling...and not on the pick-em up truck...nor anywhere near the end!! (He WAS beaten, however, by a dwarf...for real...not joking...and a man with no legs...not even kidding...he was wearing metal legs with spring feet...AMAZING! We thought about not telling B....but....Nahhhh! It's been way too much fun!!!)

The winner came in at one hour, five minutes. And the first female was finished in one hour, fourteen minutes. They were all amazing athletes!

So then the aMazing Morris Marathoners were whisked back to the hotel on their Magical feet, Managed to collect their car, in the Midst of Massive Mayhem with little Management by the hotel valet, and Made good time to St. George for Marvelous shrimp and grits at Boss Oyster! Mmmmmm, mmmmm, good!

This day...brought to you, by the Miraculous letter M! - c

Tuesday, March 13, 2012

"People are people.... matter how small..."  I always wanted to be like Pickles, the fire cat.  I wanted to do great things.  I've tried, though probably, not hard enough.

What did YOU do today???

Pick something...anything...that you feel strongly about....and see what YOU can help.

Please take the time to check out the film below.   Not that I am advocating this group in particular...there have been some questions raised about their funding and where their dollars are spent.  They appear to spend about 80 cents on the donated dollar to the things you think you are sending your money for....which is not too bad...but not as good as some other foundations do.  BUT....I promise...IT WILL MAKE YOU THINK!

When you're Stage V.....and we ALL get there eventually...will you think you did enough?  I want to be able to say...."Yes, I did!" - c

Sunday, March 11, 2012

Yard work done!

Mulch placed. Z bathed! (It's worse than washing a car!) Ran 2 miles that I actually feel pretty good about. Made my bacalao frtters which were pretty good. Not as good as the ones we had at la playa in Puerto Rico...but still. Getting ready for the work week ahead. Wishing the best for my friend Steven and his upcoming scans. May you all have a wonderful week to the greatest extent possible.
With love -c

Saturday, March 10, 2012

Much better day!

Ran 2 miles with Z much better than I have in a while.  Mowed the yard (Yes, that is with a push mower..and it is not small and IS with hills!!!) and removed all sorts of limbs and little debris left over from our storms.  Repaired (I hope) a crack that had developed between the house and the driveway.  Trimmed roses and shrubs, cleaned out Yertle/Yentle Creek...getting ready for spring.  Had a good time with the Brentster (aka Willie...on days like today) who is going to help put out the mulch he acquired today...tomorrow! And...finished afghan number two...of the past couple months!!

Joint aches are much better.  Tiredness level...much better.  Mouth ulcers still weird...with the ones on my tongue healing, but still sore, with some on my soft palate that are further back than at other times.  Oh, well, this too shall pass.

Got some salted cod resting in water to decrease its saltiness by the time I use it tomorrow in some fritters and soup...both Italian style.

Springing forward - c

Friday, March 9, 2012

A more accurate report...

So....after very cheering calls from my Perky Peptide Posse (didn't mean to worry my girls!!!!) and commiseration regarding water, car repairs, poor cell phone service, and mean girls...I'm feeling more like my perky self.

Did 20 minutes on the elliptical, gave the final paint job to a wall I've been repairing in the living room and the ceiling in a bathroom, did laundry, and ran errands with B. 

Current anti-PD1 side effects:  I have the usual red, hot, flaring granulomas in my thighs.  My inguinal nodes, which never go away these days, are bigger.  I've had the usual red papular lesions come up in the patches of vitiligo on my forearms...but they are already healing.  My mouth started feeling and tasting weird on Friday after the infusion. My tongue felt raw on Wednesday and developed some rather impressive lesions on  Thursday and is about the same today.  My joints ache in sort of a round robin fashion....first this wrist, then that one, this knee, then this ankle...  Hopefully they will all fade soon.  Could be worse I suppose. Only interesting new event is the urticaria I developed on my cheek while getting the infusion has been reappearing in fits and starts on my leg.  Hmmmm.....  Did learn that they are premedicating the 10mg/kg group with some Benadryl and Zantac (among other things) so maybe I should consider Benadryl myself next time.

Pity party over.  Now for a nice quiet evening of ironing and crochet!!! Guess I won't move to Australia after all. - c

I feel pretty.....

I feel pretty, 
Well, no, not really.
With scars that are nineteen,
And lumps that are frightening,
Things are not so pretty today.

I feel pretty,
Well, no, not really.
My tongue has been grated,
My aches unabated,
So just a party for pity today.

I feel pretty,
Well, no, not really.
Strange hives they continue,
White venues.
What else will happen today?

I feel pretty, 
Well, no, not really.
So many now missing...
While I'm here just wishing
That it would all go away.

Sorry. Some days are like that.  Think I'll move to Australia. - c

Sunday, March 4, 2012

How am I?

Have been dealing with some arthralgias post infusion...achy in ankles, knees, elbows and wrists.  Ran/jogged 2 miles with Z today.  Did OK.  My left ankle is not happy with me just now...but it will just have to get over it.  It can commiserate with my right knee and see what they can figure out. Mouth feeling a bit weird...but no lesions so far.  Very stinky.  Don't know that it is that obvious to others...but I smell/taste myself because of the sulfur based preservative in the infusion.  Really don't like it!!!!  Brent and I have been doing chores to catch up on what we'd left undone after our work week.  Dealt with our DeKalb purchases.  Did some cooking and paying bills. Heading back to work tomorrow.

Have a great stink-free, preservative-free, storm-free week! - c

The TRIP!!!!

Brent and I had an easy trip down to Atlanta on Thursday.  Flight to Tampa was rather bumpy, but not too bad.  We got into Tampa around 5pm.  Got a Toyota Yaris in my luck-of-the-parking-place ALAMO lotto.  Pretty nice.  Lame manual stick adjustors for the side mirrors that necessitate you lean up out of position to move them, so it is quite a game to get them positioned as you need them while you drive, but nice steering and good pick-up otherwise.  Per plan, we drove out to Madeira Beach to eat at Waltz.  Life in Tampa is different in March than it is in December.  Between the snow birds and the spring breakers, things were hopping.  Parking was a bit of challenge, but as I took care of that, Brent popped in to get the last two seats available.  We had delicious pinks, boiled in beer with horseradish dipping sauce, beans and rice, and grouper cakes (much like crab cakes but made with grouper)!!  Delish!  I think I mentioned that on our last visit in December, I talked to the chef and some of the wait staff as we were leaving....we were some of the last patrons....telling them that it had been a real treat and letting them know why we were in Tampa in the first place.  One lady in particular had been most gracious and encouraging...telling us that Walt himself, had just recently been hospitalized with a stroke and that if he could make it so could I.  At any rate, Thurs night, as we were there, the same lady came in and told the staff that she had Walt in the car outside.  They all rushed out to chat with him, returning smiling but tearful.  Turns out, he has been hospitalized all this time and on the very night we returned...he was being discharged from the hospital and heading home for the first time since his ordeal.  It was very touching for me and Brent, as well.  Guess you just had to be there....but....we wish you all the best Walt.  Hang in there!!!

Then, we were off to our La Quinta home-away-from home...newly renovated I might add.  Up pretty early to make our 0730 start with requisite waffle made and delivered by the Brentster!!  To the CRU (clinical research unit) for IV start (done REALLY well by a great nurse!!!) and huge blood draw (16 nurse kept offering juice, afraid I would be faint...not to worry lady....waffle on board!!!).  Back over to the MD office to see the NP.  Apparently, I am the vitiligo queen.  Now it is so easily noted that even the untrained eye can see it (my babies trace it gently with their fingers as I examine them).  My providers spontaneously noted that I was 1 of 4 in the study with it...but the others had just a lady with some on her forehead..and a couple of others with a little scattering here and there. Brent had already noted that it had really increased just since December...but anyway....  Nothing else much remarkable in the visit.  Back to the CRU for the infusion.  It was uneventful except for a sudden onset of itching and a specific, obvious blotch (hive/urticaria) to my right cheek about 20 minutes in.  It faded in about 30 min or so....not sure what that was about.  Perhaps I should premedicate with some Benadryl next go round. 

Off to the airport...with gas fill-up at Dale Mabry... We have our little routine.  A little worried about our flight because of bad weather in Atlanta and further north...thinking our flight might be delayed because of problems landing....but no.  Off without a hitch. (Unless you consider having to be felt-up by a stranger both coming and going a hitch!!!!  Note to self...or terrorist of any sort: Travel with a dog....or child.  If you do so...the waves will part and you can simply walk right through the metal detector with your drug/bomb...granted plastics only...housing worries!!!!)  So, we were off....flight actually less bumpy than the one down...except for the landing...which was a bit of a carnival ride....though done very well by the pilots under the circumstances.  Skies were cloudy, but no big Brent and I decided to go by DeKalb Farmer's Market.  We took a most circuitous route in Atlanta rush hour traffic. (Why men argue with the gps and why women believe the men is a whole other blog topic...or book for that matter!)  But our LONG and winding route allowed us to see that spring has sprung in Atlanta.  The Bradford pear, forsythia, daffodils, camellias, red buds, and even a few azaleas were just was the double rainbow that Brent kept wanting me to look at while dodging crazy ass Atlanta drivers!!!  Fun time in DeKalb.  Shopping for food or shoes....count me in!!  Twice!!! 

As we started home, we began receiving texts from Fred, Rose and friends...."Where are you?"  "Are you aware there are tornadoes in your area?"  Rose was adamant, "There is a huge storm with purple and red in it....that means high winds and huge hail...crossing I75 at Rome!!!"  "You need to stay in Atlanta...just make sure you are south of Georgia Tech!!"  With so much against us...we turned back toward Atlanta and made our way to a covered parking garage we knew of in midtown, thinking to just wait out the storm.  But, our watchers made it clear it was a string of storms that was not going to end anytime soon.  When they announced that all lanes of I24 were closed because of downed lines....and my knees and ankles were beginning to ache and the rest of me beginning to wilt....we made the decision to stay overnight in Atlanta.  We ended up staying at Twelve.  It was awesome.  I highly recommend it to anyone headed for a night in Atlanta.  Plus, we had to take a suite because their other rooms were full...but that gave us access to a full size refrigerator that we could store our DeKalb purchases in and not have to worry about them spoiling.

After a good rest...despite the thunder and storms that raged...we finally made it home on Saturday.  All was well here.  Just some limbs down in the yard...possibly due to the windy storm we had experienced just before we left.  However, plenty of destruction in an area in the northern part of Chattanooga as well as all the other places in Kentucky and elsewhere that have been shown on the news and weather stations.

To all the storm sorry.  Hoping for a brighter tomorrow for you and yours. - c

anti PD1 update from Moffitt

Our trip to Moffitt went well...more on that later.  Here is the best data I was able to glean from the coordinator and NP I saw on this visit. (Weber was out of town.)

According to their reports...all the patients in the resected 1mg, 3mg, and 10 mg/kg groups of this trial continue to do well with the exceptions of the patients who had to drop off early on that I have already talked about.  One patient that I've mentioned before CONTINUES to show improvement/regression of the tumors that initially progressed, despite, STILL, having been given no other treatment.  Apparently, this has fostered discussions of whether or not the maintenance doses that I and others are taking at this point are even needed.  At any rate, I am very pleased for that person and what that says about the potential of MDX-1106.  On  a slightly more worrisome note, some of the patients in the 3mg/kg group are dealing with more side effects than have been experienced in my cohort.  I've already mentioned one patient that had swelling of the optic nerve with subsequent vision impairment that was, I'm told, relieved by steroids.  Additionally, there have been 2 patients with colitis (1 currently in hospital) and 2 episodes of pneumonitis. The 10mg/kg group has only two patients who have begun dosing (one is only 2 treatments in) though we were assured that the cohort is now full, lacking at most, only one unfilled spot, though our sources suspected that it was filled as well. yet it is unclear what, if any, side effects those folks may experience at the increased dose.  On a positive note, if this works like ipi....the patients given 10mg/kg did much better as far as tumor burden and regression than the patients with 3mg...but did experience greater side effects.

A slightly narcissistic thought/question....  I had a really pretty bad "asthma" flare around Christmas, after my last infusion on December 9.  Also some of my scans have shown white patchy stuff in my lungs, that we have attributed to my asthma.  Sort of makes me wonder if it was really a very mild pneumonitis all along.  We'll pay more attention to what my lungs do in the next couple of weeks to see if there is a pattern there.

Given some of the questions that have been posted re: results for patients on the Cure Tech version of anti-PD1 we asked about those patients as well.  We learned:  100 patients were placed on the trial nationally.  Moffitt acquired 4 slots.  Currently 1 slot remains open because the patient that was to take it failed the lymphocyte criteria.  Nationally, we were told, that the Cure Tech trial is "closed", "since the slots are filled".  Nationally, the best response so far is only "stable disease....with some who have progressed".  "There have been no patients with regression."  At Moffitt, there has been stable disease in their 3 patients.

Overall, we were told that "it appears that anti-PD1 holds a great deal of promise" since patients like me (ie stage IV...and we all know...there is no stage V!!!!!!) are still alive and kicking at this point.

MARCH FORTH....there is hope.  3/4/12 - C