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 10....as 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 (seriously....at 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 meds...so 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 over....like 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