We are, for the first time in a long time, hopeful and excited.
Even walking in the building this morning, it was apparent that this place ROCKED. Everyone we encountered at Sloan Kettering was caring and sweet, looked us in the eye and didn't for a second assume they knew anything about Mom's situation before really hearing about it.
So after checking her in and taking her vitals, they brought us back to the examining room (which had its own private bathroom and a nice round table with four chairs). Several minutes later we met Mom's doctor, Maria Pietanza. WE LOVE HER. She asked Mom about 300 questions, including asking for the whole history of her pain, where it hurts, when it hurts, etc. etc. She examined Mom, said she wanted to take a look at the films again, and then would come back so we could discuss treatment.
When she came back she said, "So the first thing we need to do is get rid of your neck pain."
YAY!
She told us that radiation is the best way to do that, so we made the first available appointment with Dr. Alice Ho, the radiation oncologist (that appt turned out to be Monday morning at 10am). Mom is also getting a CT scan tomorrow which will allow them to target the exact spot in the neck needing radiation - woo!
Pietanza told us that chemotherapy controls the disease, stops new metastases, shrinks tumors and prolongs survival. We like all of these things. Systemic treatment is needed and she wants to start with a combination of carbo-platinum, taxol, and avastin. She will also have supportive medication to bypass some of the side effects (and we will be seeking out fabulous scarves).
The radiation will go on for ten days at a time (once a day), after which we will begin chemo. So chemo should start in about two weeks. When it starts, the chemo will occur once every three weeks and normally goes for six cycles. After two cycles of chemo they will do a test to see if the "cocktail" is the right one for Mom.
This doc chucked her former pain meds, and now she's on:
- oxycodone for pain
- steroids to take down the swelling in the neck/kill the wheezing
- antibiotics to counteract the chemo's pending effects on the immune system (good cells and bad cells all go out together)
- anti-nausea pills
- cough-suppressant (major)
- and ya know...laxatives
After the doctor left, a nurse came in and talked to us, explained in detail which meds to take when, and said sternly "Nobody should be sitting at home in pain, so if you're in pain, tell us."
YEAH!
Today her head actually bopped to the music as we sat eating in PJ Clarke's, and tonight she has been sitting up, having impassioned conversations. SUPER CHATTY! The neck pain is markedly better and the wheezing has almost gone away altogether.
5 comments:
yay, yay and more yay. fabulous scarfmaking sounds like fun to me!
Janet, I have a magical scarf from India that has been waiting ti be worn...I think we have found the perfect occasion. It's full of magic and love.
And there we have it. Pain begone, sez I. See you at IN CIRCLES tonight. We love you so dearly and it's been destroying us that we haven't been able to be there for you more during the last couple weeks. Soon, darlin'.
Hey all,
So, I just sent an email to Janet, but I'll echo it here. I just got back from the midwest doing a gig and I have nothing going on. So, whatever you need I'm here. I know it can all seem hideously overwhelming. And oddly enough it can be the little shit that's the worst. So, please don't hesitate to call if you need anything. Errands, company, conversation. Whatever. I'm here. 917-596-2124
Lots of love.
Thank you for this blog! I don't want to overwhelm with phone calls or annoyances, but there are MANY people thinking about you Janet. You've given strength and love and encouragement to so many of us. Time for some to come back at you!! From the Chaikin circle, the TYNA-ites, and beyond: LOVE. We're here. Wayne
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