New Start!

 

New hair dude! New exercise plan...insanity! Thanks to Roo. Getting things together and having fun with Brent this weekend. Thanks to all of you who support and encourage me everyday!! Love - c

A really nice weekend...

...seeing Rosie...such a fun sweet girl! Shopping for fruit, veg and fish at DeKalb. Finally, with Rosie cheering all the way...got in 2 really good workouts...the first since the leukophoresis. Went with B to see some Civil War photos at the Hunter Museum...lets just say that he can't criticize any "sad", "depressing" movies that I select for....a lifetime!!!!! Picked 16 cups of blackberries with Bentie...my city boy! Some messages with my Fred-o. It was nice.

Trying to get myself back together. Seems like the past year has kind-of hit me all at once. Got to get a new momentum going. Just know I can't do another year like the one just past. Need to turn over a new leaf...somehow.

But with all my sweet peeps...I think I can. "Act enthusiastic and you'll be enthusiastic!" "I think I can, I think I can, I think I can!" Here we go......

Never really wanted to be a mouseketeer....

...but I guess it would end up being pretty cool. Had fun with Rosie on Sat...got to visit and play together. Brent and I had a relaxing evening in Hot'lanta that night while unbeknownst to us...many friends in Dalton suffered with bad storms and loss of power...many until yesterday!!! We stopped by the DeKalb market for fish, fruit, and veg Sunday morning and had an easy drive home. Work has been fairly calm...maybe summer is finally here! But...back to the mice. Brent tells me today that Weber posted a study dealing with mice who were given melanoma...poor little ratties...and then treated with a vaccine combined with anti-PD1. The mice who developed vitiligo...depigmentation of the skin and hair...ended up having a complete "cure". I am always skeptical of that word in cancer studies. I am already a "cure" because I made it 5 years past my first episode. BUT...we all know what happened after that. However, Brent was/is excited and thinks that it is really good news. I definitely have vitiligo. It is continuing to increase on my arms, back and chest...even though I have not had any additional meds since June 3. (Lucky me!!!) Still very itchy but beginning to get some of my strength back. So...here's to ugly white patches and The Rats of NIMH!!!!! c (You better believe that I could get out of those cages...or could I?)

R & R

Came into Atlanta Friday morning. Picked Roo up and did a little shopping and lunch at the DeKalb Farmer's Market...we love their cefeteria style line with everything from fried chicken to goat stew with tabouleh and Samosas in between! It was a little cloudy, but we had a great walk and visit in the Botanical Gardens. I love their relatively new exhibit -the edible garden. Brent thought the okra plants were very pretty! Then we took Rosie back to Tech and we went to a nice hotel Brent had gotten with a neat view of the city. He and l took a walk in a pretty blustery wind storm...but it was fun anyway. Then we were back to Tech to pick up Rosie and her friend, Mike, for a fun dinner at Ted's Montana Grill...a chain developed and owned by Ted Turner apparently. We had a good time and it was good to get to meet Mike. Just chillin this morning while Brent is exercising! Plan to explore H-Mart with Rosie later today! Hope you are all having a great weekend - c

Chill'n in Fayettville, Ga...

...while Brent has a meeting. Pretty little town with Historic area that includes old Southern homes, all with family names on demur signs, along with a rather contrived, newly built series of streets and sidewalks perfectly designed to complete the desired appearance of the old southern town square 'look'. But, nicely done with good bit of green space, gazebos, and park benches here and there. You do have to travel down Bedford Forrest Drive and back up Jeff Davis Avenue to get to them! Interesting! Beautiful day, a bit coolish (for Ga in June) after the storms of last night. Went to the library which was pretty nice and well populated and is building on a new wing so l took that as a most positive sign. People here have some difficulty driving it seems, as well as a good deal of traffic for the area involved. Doing some reading and resting! Much love -c

The Fred MAN!!!!

We celebrated Fred's B-day early, while he and Rose were both home between semesters. However, my baby is now a REAL MAN...at the ripe old age of 21!!!! He partied with his friends in Knoxville and lived to tell the tale! I love you, Freddie. You'll always be my Freddie Froo Froo, no matter what. We are so proud of you. Much love!!! XOXOXOXOXOXOXOXO

Busy weekend...as usual!

Last Thursday, it was back to Tampa. Saw Dr. Weber on Friday. Brent had lots of questions. Weber repeated the info about my cohort in the study...saying that still...only two, early on, had had to withdraw from the study. Did find out an interesting factoid. Weber said that the FDA forced him to use Stage 4 disease patients in this study. He said it as though he had wished otherwise, because we are the group that has such a dismal prognosis no matter what you do to us. Didn't have the presence of mind to ask why the FDA did that...but anyway. He told Brent that I was in an elite group...since all of us, except the initial poor two, have remained disease free, me for 6 months and some in this study for 9. Folks in this category are lucky if they stay disease free for two months. So....for what it's worth.

Leukophoresis was rather hectic...what with waiting for over an hour before anything was started. Then, IV's were started with only one stick each, which was good, but they didn't seem to be functioning well. I do have limited vein options given what they've been through over the past 6 months, and especially in the last week. At any rate, the machine kept beeping indicating poor flow and the techs would come fiddle with things. Ended up staying on the machine for over 3 hours and had to stay stock still as the lines were so precarious. Got a terrible crick in my neck..that is still aggravating me. Also discovered another factoid. I asked about the gauge (size) of the lines they put in to collect and return the blood for the phoresis and was told that it is one size smaller than that used for blood collection at blood banks. Well...I think that is STUPID!! The pain is not appreciably less, with that slightly diminished size, but the size is too small for red blood cells to funnel through unharmed (that's why blood banks use a larger size...no need to collect and give damaged cells to patients). NO WONDER I GET ANEMIC AND FEEL SO TIRED after. They go to all the trouble to give me back most of the red blood cells but they are so buggered up that they don't do me that much good. What's the deal with that?!!!! Anyway...the whole deal took so long that it was a bit of a rush to get to the airport in time for our flight. Had to be felt up once again, for good measure, by the wonderful gals in the TSA in Tampa! Good grief!

Anyway....got to spend some good time with the Roo. We picked her up on our return to Atlanta and brought her home with us for some R&R. I took her back to Tech on Sunday afternoon. She's a real cutie. Miss her already!! Work's been fine, but busy.....and tomorrow Brent and I will be returning to Atlanta when I get off work for some meetings he has and some relaxing and some visiting with Rosie. Looking forward to the gardens, maybe the art museum, and DeKalb. We'll see...just gonna chill and return home on Sunday.

Here's to plump RBC's!!!!! - c

FYI - Ipilimumab is now approved and on the market under the brand name of Yervoy. Don't ask. I don't know where they get these names. It's yours for the bargain basement price of a really dreadful diagnosis and $30,000.00 per dose. Treatment requires 4 doses!!! And, my anti-PD1 infusion also goes by the name of MDX1106....so don't let all this confuse you if you see stuff being reported from ASCO (annual oncology conference) that was just held in Chicago. c

Scans clear....

....after a day of pokes and prodings...not to mention all that went before today!!....it was nice to get the all clear on the MRI of the brain and CT's of the neck, chest, and pelvis per the Erlanger radiologists today. We still have to see what Weber has to say on Friday...but Brent reviewed everything and they all look no different to him....so there you go!!!

So tired right now...that it is hard to have things sink in...Brent is very happy. Not looking forward to leukophoresis and the trip this Thurs and Fri...but it will pass and I will be free for 3 months.

On clear day....you can see forever....or at least....3 months. With love - c

SIX MONTHS!!!!

I can hardly believe that I have spent the past 6 months going to Tampa (via Atlanta) more frequently than every 2 weeks! That alone...not counting injections, infusions, and side effects...has been something!!! Just keeping the laundry done, yard in some order, and bills paid...while traveling and working....has been quite the accomplishment!

Anyhow...Brent made the trip with me once again this past Thursday. We managed OK with only minor glitches at Alamo (The dude checking our car back in, in Tampa, had to have a big Tadah about a chip in the windshield...which was there when we got the lovely black Chevy Cobalt...along with all the other dents, nicks, and stains in the seats...requiring us to go to the office and deal with papers and office workers...WHEN WE HAVE A PLANE TO CATCH!!!!.....funniest statement....when the office worker quickly surmised that I was having none of this...was = "Well, he's new...". I said, "Yeah, well...I'm old! That chip was there already and nobody cared and all the cars you rent are crap!") and then, in the Tampa security line when they, in full view....I saw it!...placed a bogus bag in front of the passenger in front of us...and the screeners had to have major consultation, and call for back-up, and call for supervisors, and then hi-five one another and chat it all up, because they had found a "scary" dummy bag that I saw the guy put in there all the while. Thought you peeps were suppose to be on the look out for weird dudes shoving extra luggage in line...I saw it!! On top of that....PLANE TO CATCH, PEOPLE!!!!! THAT'S WHY WE'RE HERE!!!!!!!! However, even with all that, Brent and I did get an earlier flight home and got to have a really great visit with Rosie in her new place. She made us pizza and we had a great talk. Otherwise...the NP had no info...Weber is off at the ASCO annual conference. We will see him later this week. Had a nurse that was new to me, but I had seen her around and she did a GREAT job. No knee swelling. Side effects so far include, just a pretty impressive local reaction, as well as generalized arthralgias this go round. Mouth just feels weird, no specific ulcers so far. Walked 3 miles Sat and today while Brent and Z ran. Did about in the yard. And just caught up on stuff in general. Will be getting scans (CT's and MRI) tomorrow. Have leukophoresis and an apt with Weber Friday....so Brent and I will be off to Tampa Thurs! (AGAIN!!!!!!!)

Travel lite - c

Fred-o leaves...

On Sat we got Fred moved into a nice apt in K'ville. It is pretty cool. I think you'll have a great time there Fred-o! Sunday and Monday I ran 3 miles each day with Brent and Z. Was pretty proud of that since it's been a while since I made it that far! Lungs are better so that helps. Have had joint pain and weird mouth stuff that waxes and wanes ever since the last treatment. Work busy with patients and a new computer system...but it's coming along. More fun in the sun in Tampa tomorrow. Can't wait for that.

Stay cool - c