Monday, January 31, 2011

Legs revving up again...

...getting all pink and favorite kind of leg!!! But, doing ok. Ran 3 miles with Z and Brent on Sunday...slow but sho! Glad to finally get outside for some exercise since it was a bit warmer and my asthma is getting back under control. Worked, busy, busy, today. But that's ok. A little warmer, but winter is still here.

Thanks for all my wonderful cheerleaders.... c

Saturday, January 29, 2011

Another one bites the dust.....

Back home from our adventure! Ruthie was great on our trip and we did just fine. Took our time getting down to the Atlanta airport, our hotel, the hospital, the Tampa airport, and back again. Ruthie made it fun. We enjoyed people watching and talking. The weather was really pretty in Tampa and we were able to eat a lunch on a little patio. (The food was rather bad...but the company was superb!) We had a wonderful dinner with Rosie and her roommate, Maureen, once we got back into Atlanta on Friday night at Mary Mack's. Rosie had scoped it out for us and we swung by their dorm to pick the up and had a regular night on the town. Both girls were so pretty and sweet to entertain us so!!!!

The treatment process itself went fairly well. Got held up at the start by a check-in clerk who was new and without considerable skills, tact, or patience. She finally sent us on our way without really checking me in, but only after messing with my account on the computer in some manner that made it impossible for anyone else to check me in either. However, I had a really wonderfully bright, caring, and efficient nurse in the unit that just got things going anyway and labeled all my stuff PTC (plane to catch)so that my lab would be run quickly, making them ready for review by Weber's office, and the pharmacy alerted to formulate my meds first so she could start the administration process as soon as possible. She was really great and knowledgeable accepted the duty of unraveling the mystery of why I was only getting 1mg/kg of meds in my infusion, when we had thought that my dose would increase to 3mg/kg this time.

Brent had given poor Ruthie strict instructions to take a picture of the IV bag label and send it to him via her phone. She did so and he promptly texted that I should be receiving 183mg rather than the 61mg listed. This alarmed Ruthie and she dashed out to find our nurse, told her a rambling, but perfectly accurate story about Mr. Brent the MD, his obsessions, our expectations, and our current confusion. Our nurse checked everything out and concluded that my orders were that I was to be given 1mg/kg for all my treatments, but promised to check with Weber's office and the pharmacy to make sure. She went away, briefly, returning with a full explanation. Turns out my dosage was correct and I will, in fact, receive only the 1mg/kg of the antiPD-1 for the entire time I am in the study. The cause of the confusion lies in the fact that the study agreement states that there will be an escalating dose of the meds, starting at 1mg/kg, then 3, then we remembered. The problem is that it doesn't say that the dose escalation is for future studies (nor does it say it is for my study in particular)....but you see the problem. Anyway, the fact is, I am in the only study going and it is for 1mg/kg. Someday, depending how those of us in this study do, there may be a study with the
3mg/kg dose, but no one knows when or if this will really happen. Discovering optimum dosing, with the best effect and least side effects, is what most Phase 1 trials are all about. So...with all that said, my nurse remained very informative and kind...not at all bothered by our questions and quite willing to do the work required to get to the bottom of things. LOVE HER!!!!!!!!!!!

Not so happy with my NP. Wasn't really happy with her last time as she seemed rather dingy and was unable to find a 4 inch scar on my back with me pointing to it!!!!!, but hadn't done much of anything either way, so I was trying to withhold judgement. That's over! She jumped into my exam room, and squeaked exuberantly, "I just Spackled!!" Ruth and I are looking at her, probably with some alarm, not to mention confusion, "You, what?" I will spare you the long ( least 10 minutes!) rambling, uninteresting tale of her handy mother who painted her car and changes its oil, and equally nifty grandmother who sews and such, and the fact that she now doesn't need a man to Spackle for her, though now she does need to find someone to teach how to Spackle, since she was taught to watch 3, do 3, teach 3....there was more! (I was taught: 'See one, do one, teach one.' personally, and I actually had to learn something, but I digress.) After managing to bring the subject back round to the cancer patient in front of her, she continued to talk incessantly while listening to my breath sounds and heart through my clothes. Then we managed to fit in a question about the granulomas and cross reactions on my legs to which she said, "Oh, some patients just get those lumps, I don't really know why!" I thought Ruthie was going to start screaming. I know Brent would not have handled that well at all. We had more questions we were supposed to address, but we gave up and will deal with them with Dr. Weber himself on the next appt. They were related to the scans and lab at the end of this round of we have time.

Our nurse on the other hand, was much more appropriate (to say the least) and actually referred to my "lumps" as granulomas, talked about the combined effects of the vaccines and the anti-PD-1 to trigger the enhanced reaction and immune response of both, T-cells and the like! There was much more inane commentary from the NP about Gasparilla...Tampa's version of Mardi Gras...but I promised to save you from our despair!!!

Anyhow, back home now. Feeling a bit sore all I had a big weight lifting work-out yesterday. Leg getting "lumpier". But doing ok. After Ruthie left around noon, I puttered about in the yard, since the weather is so nice, trimming my roses and cleaning out the creek, Roo! Took the doggies for a walk with Brent, who's about to make me some chicken thighs with special sauces!!!

Dear, sweet Ruthie...thank you for taking such great care of me and making me laugh.

May your nurse practitioner be able to name your lumps!!!! c

Friday, January 28, 2011

Up bright and early with Ruthie!

Ready for more Tampa fun. Trip down went great. Getting ready to head out! Love to all-c

Thursday, January 27, 2011

Here we go!!!

Ruthie is so sweet! She drove up from Prattville, AL yesterday. We had a good dinner together and this morning we're off to Hot'lanta and more Tampa fun! I've felt fine for the past two weeks, although there has definitely been more local reaction to the vaccines as well as reignition of inflammation and lumps to the leg that got vaccines the time before that. Brent says, "It's those angry T-cells at work!"

Hope you all have a great day. Will keep you posted with our progress. Love - c

Tuesday, January 18, 2011

I was confused!

For those of you I told that I thought the redness on my leg had started sooner this time than the last, I was confused. Was talking to Kik about it and she pointed out that my first treatment had been on a Monday...not a Friday like this one. I'm crazy!!! So...the redness started in exactly the same time frame....the Thurs after the Monday treatment and Monday after the Friday treatment. Anyway, the redness is a bit more extensive this time, while the other leg does not have any redness, it is a bit tender on one of the knots that you can feel again....and we could not feel them on my Friday exam before my medications. Or...maybe I'm just imagining things.

Have a great day with less confusion! c

Sunday, January 16, 2011

Doing ok...

Had a weekend of rest, reading, exercise,and cooking with Bent. Did the elliptical for 15 minutes with core yesterday and 30 min with core today. Took pups for a walk with Brent both days. Feel tired now...but I suspect that that is warranted!!! Leg sore and bruised but I seem to be fine otherwise. Bent if off tomorrow, but I will head down to Dalton, having been off a week with the snow, I should be ready!!

Love to all - c

Saturday, January 15, 2011

One more....DONE!!!!!

Back home from one more Tampa trip in the snow! Seriously.....NO MORE SNOW!!!!!!! Anyhow, being able to fly down and back (it's just an hour and ten minutes or so direct flight) made things much easier, as did not having to do the leukophoresis on this trip. Had the same really nice nurse as last time for the IV start and initial blood draw. Then up to Weber's office where I was seen by his NP. Also got in touch with Kim, the nurse coordinator for the study, and got her to get times settled for the next 3 visits so that we could proceed with plane tickets and such. She also checked with Weber about the possible use of Emla (a topical numbing cream) as a pretreatment for the vaccines. Found that it isn't so much that he objects to it, rather, he told Kim that when he had used it in the administration of similar vaccines it had not been effective since the area numbed was too superficial. Oh, well. We tried! Then, back to the research unit and same nurse (and my BED) for ice packs to numb my leg, the vaccines, and the IV infusion. All went well. All vital signs fine and perfect lab results. My leg is very tender right now, but that is to be expected. Did find out from Kim and NP that not only could my reactions to the vaccines increase, due to cumulative effects, but the prior vaccine sites could become inflamed again due to the response to the new dose. Interesting! Otherwise, feeling fine at the moment. Atlanta is a mess. Had nice supper with Roo, but oh my goodness! Ice still everywhere!!!!!! Roads fine once out of Atlanta, though subdivision still challenging although most had melted off our big hill so we got home just fine.

So....there you have it. Treatment done. Time for bed. Sweet dreams -c

Thursday, January 13, 2011

I beg you....

PLEASE u-tube Obama's Tucson speech if you did not see it in real time. Pretend it is me saying the words if that's what's you need to do to really hear them. Live this. Do for others what others cannot do for themselves. Be what you never thought you could be. I so wanted to do big things. I will still try. Promise me that you will too! Together anything is possible. I still believe that. You can be more than you realize. And so many need you to be.

With much love - c

Wednesday, January 12, 2011

Ready, I guess

House is clean, clothes are done, tax papers are put together as far as can be done at this time, exercised daily since Thursday, doggies are set, drive is clear, snow plow and sand truck finally came thru this evening, Bent got out late this morning and should be able to pick me up in the am. I plan to go back to his office with him where he'll work 'til noon and then we are on our way to Atlanta for our 5 pm flight to Tampa.

Hard to get excited about 6 more shots, so I'm just not going to think about that right now!!!

Tuesday, January 11, 2011

Get off your tookus....and MOVE IT!!!

I've had a hard time getting my strength and exercise routine back together since the end of October's tonsillectomy and subsequent asthma exacerbation...but I was beginning to get back into motion when the kids got home for their winter break. Thanks to Rosie's encouragement, tough coaching, and willingness to lead by example as well as the ability of Fred to make me laugh and the FRED CHANNEL on my iPod, (consisting largely of B.E.P., Sean Paul, and the Best of Bootie!) I have made good progress over the past couple of weeks. I've been doing the elliptical for 30 minutes everyday along with my "core" (40 sit ups, 10 push ups, 20 seconds of jelly bellies, 20 seconds of plank, and 30 leg lifts per leg) everyday. BOTTOM LINE: If I can do it....YOU can do it. Set your goal, whether it's for more endurance, strength, weight loss, or a better attitude...and build your own steps to it. The ONLY thing that can hold you back is you...and you're too good for that! So............MOVE IT!!!!

Thanks binga-heads! ILY! c

Monday, January 10, 2011

The big 8 inches of snow...and playing hookie!

We had fun taking a walk in our snow with the Zeno monster. He loved it. Karma doesn't find it so wonderful. No work for us today. Don't know if we'll make it out tomorrow either. The W and the main road up the front of the mountain have both been closed and no snow plows have made it to us yet! Stay warm!

Christmas at Ruthie's

We had such a good time having our holiday celebration at Ruthie's new house in Prattville, AL. Brent and Joe had to work and Frank was the host with the most taking this group picture for us!


A bit late in posting this, but I thought the kids were cuties and we had fun cooking together. Rosie made green bean casserole, Brent and Fred helped broil a steak and we had a roasted pumpkin filled with bread and cheese for a sort-of backwards fondue. It was all delish!