Knock. Knock.
It's room service. They set up a beautiful table next to the window and we had an amazing fancy King and queen breakfast. We got ready and headed out for our adventure.
We took Uber and when we got inside the building, they very politely explained that we were in the wrong place and a very nice gentleman, we think he said Vortex was his name but who knows. He walked us across the street, took us on the elevator, all the way to the office. Really, I kept wondering if he was real! Well thank you! It was super nice to not have to figure all of that out. We spent a good deal of time filling out paperwork and confirming medications with the nurse. Dr. Kesari's PA came in first to collect everything from notes to tests to whatever. I really liked her. I was anxious. My stomach had been doing flip flops for at least an hour now.
Finally Dr. Kesari came in. We talked for a long time. There so much I probably could never adequately explain all that we discussed. So, here is my attempt of explaining what will be happening.
For now, nothing. That's right. Nada.
Enjoy these next 5 days before getting slammed again, EXCEPT oh he wants to up the brain portion of the chemo and lower the carbo. Then he wants ALL previous scans redone 3 weeks out from the next dose, Friday May 6. That's PET, MRI, whatever.
He took blood for some further dna testing, tumor markers, etc. He was wondering if he had enough time to access the ommaya for testing too! I was like I'll do whatever you want several times but that I was like noooooo inside. Thankfully he didn't have enough time and said Dr May can do it.
That leads us to doctors. So, I have not formally written my dismissing myself letter to my Atlanta neuro-oncologist, but we will no longer be needing her services. I haven't really loved her anyway so it was actually a weight lifted.
That leaves me talking to Dr May and hoping she is cool with Dr K calling the shots from here. They mentioned more than once that they are very open minded and know how to get things done.
For instance. When I mentioned immunotherapy, specifically Opdivo, to May she said it would take 6 months and loads of paperwork to get it since it's not approved for breast cancer. So, I've already started the paperwork and it usually takes one. One month. So we will have it if the scans look bad!
Basically we would do the first one or two treatments in LA and then They could transfer it to Atlanta! Seriously. I'd probably still head out every 3 weeks. He asked our willingness, we were like whatever, so we may need buddy passes, miles, whatever soon! Haha. On top of the drugs they tend to like high dose vitamin C infusions which I've asked for and been blown off.
One of the biggest things about being there was the immediate confidence in Kesari's answers to my questions. It was like 'that's easy, I've seen/heard that a million times.' No hesitations. No 'we could do this or this,' it was you should be doing this. Period. Something you don't see often. It was what I loved instantly about Dr Namnoum. Confidence in what they say and not this 50% guessing stuff.
So, you still with me?
1.Call Dr May and be sure she is cool with doing whatever Dr K says. If not, we go back to Emory and will hope my oncologist there is still as awesome as she was to us in September and still there! Haha.
2.Do chemo #2 on 4/19 with adjusted doses.
3.Redo all scans May 6, probably including accessing the ommaya for new baselines. He didn't look happy that my spinal fluid had not been tested or port had been accessed since February. Likely needed to be tended to just like a regular port. So now I'm nervous about that. I am NOT in love with that process anymore. Between failing once, stinging now when accesses and Depocytes hell responses on my body, I'd like to not use that, unless of course you say lumbar puncture, then whatever, go for the port!
4.start process of obtaining immunotherapy drug and they have had great success with it. Will take about a month, not six.
They took a mad amount of blood. Sending some off to have tumor markers run (I think these are more than just the two C tests, and sending off to Guardis for further DNA testing. The 300 something one that MDA said may be good. They basically want it for if I get worse down the road. It helps target which drugs are best for you.
Also mentioned several other drugs. Their goal there is to hit cancer from many angles and hard. When I say they are changing doses they almost doubled the dose of Alimpta.
I asked a couple of times about his trial and there was not a lot of I for there, more of an awkward tilt. I did explain I've done my research on him. I think he was likely shocked. All in all, we have no clue what his study will be for certain. Just what we think it might be.
You know, now that I'm actually writing this out, I'm realizing I may need to move to Emory. I guess we will see where the next few days take us. Just trusting God to have me make the calls I need so my new team is ready to make miracles happen. No lazy players on this team!
We left there I think mentally overwhelmed with information and kindness. Top notch from every corner. Even a lady stopping us in the hallway about my pants. Then we walked back out to the main lobby and I realized a few things.
It was Saint Johns Hospital and inside it Providence health care with a giant cross as its logo. There was an amazing installation of art that was donated by some family of frames of encouraging words to sculptures and oh and beautiful cross. I was in awe.
It was only noon and more awesomeness still lie before us.
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