Things have changed and morphed by the hour over the last few days so I'll just get the current situation ticked off and another time I will give the low down on how we got here.
The first good news is I'm getting treatment as an outpatient. It took an extra day to get things organized but it started today. I spend several hours at the clinic, then leave with a take home pouch of chemo and a special chemo-spill kit. We civilians are not allowed to disconnect the pump because it's chemo, but my nurse of the day, Mary, volunteered to come to the house an unhook it so I don't have to wear it all night long. (And so I can shower and change clothes.)
The next good news is the PET scan shows no cancer except the lumps in each breast.
More good news is the insurance company approved the chemo drug clofarabine. They were balking and said it would take days and Dr Abhyankar didn't want to wait days and KU decided they would cover it if the insurance company would not. They put their money where their mouth is. However after Dr. A sent journal articles citing its efficacy, they agreed to cover it.
The PICC line went in smoothly--I was not looking forward to that. The last time I had one inserted it was a very uncomfortable, hour long slog with a lot of bleeding. Today's was just a few minutes.
This type of recurrence is rare. Not only has the KU team not seen it much, neither has any transplant center in the country. So they are all taking and sharing information to plan next steps.
The hope is that the chemo and the Revlimid will work together to shrink the tumors. And of course that my liver will not choke and the bone marrow will remain 100% donor or close.
Tomorrow we hope to have results of the biopsy showing 5q-.
I am bit horrified to be in this elite group. The fight in me has not taken hold. My sister Mari is here with me now. Conor and Mark are coming. My cousins Gail and Sara are coming and my sister Janice. So I have a lot of coverage up front here.
I'm guessing this will take about 2-3 months to work out. I want to stay at home, but of course I cannot be alone so I will be looking for companions. Mom & Dad are ready and willing to have me move back into their house but I have my place fixed up and comfortable and I would really like to be able to stay at home.
Ok. Check tomorrow. The plan changes at least twice a day. yesterday it changed hourly.
I'm thinking Fembots for a visual. Robot breasts firing bullets full of cancer cells. Anybody else remember this from Austin Powers?
~Cathi
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3 comments:
I think the Winston and David have some water guns in the pool that give a good visual if you need me to line them up and send a little shot on youtube! Not sure how I will explain what fembots are to my 9 and 11 yr old! Hope today is a good day! Prayers are going strong. We love you, R,D,W&D
We've got the visuals going out here in DC, lots of folks on Capitol Hill I'd like to be firing them at.... ;o)
You're sounding so strong and in good spirits, considering this big fork in the road. You're still inspiring me girl!
Love ya,
Nancy
Love the fembot visual. You have a strong chain of believers following with you, and you are making history and will continue to make history while you beat this thing. Thank you for sharing all of the details so that we can be so in touch even from a distance.
Love you!
Cheryl
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