It's Official...I'm a Wimp! :-)

As the chemo nurse stuck her head out to call her next victim...uh I mean patient...she wanted it to be known that I am very sensative and I would need to first see the doctor before seeing her.

My counts were much of the same despite the 30% reduction in Methotrexate and 50% reduction in the Velban (vinblastine). Man! And there are small children who are tolerating this better than I am.

My friend Karen had done a lot of research on the many different drugs used to treat desmoids and so I asked Dr. Polonsky his opinion. Apparently, Vinorelbine is in the same family but tends to be less toxic on the liver. Before bringing this up we were going to go ahead with the decreased doses used the week before but after talking about vinorelbine, he decided we would give it a try.

Maria, the chemo nurse didn't have enough of the vinorelbine so I got what they had. It is delivered a bit differently than the vinblastine. The vinblastine was pushed through my IV but the vinorelbine is given in the IV via a drip. So now I get the first IV bag that has the sodium chloride and vinorelbine followed by a bag of sodium chloride. She explained this drug can burn the veins so it is important to let them know if I every feel any pain. It can cause some real problems.

I am always very curious so I asked her if the Methotrexate was also in the bag because she didn't "push" it through the IV. She said that I wasn't getting Methotrexate anymore. This didn't sound right to me so I kept questioning her. She asked the doctor and yes I was supposed to get that one, too. It pays to be your own advocate. If I hadn't pushed it, I never would have gotten it and who knows how long it would have taken to catch. Unfortunately, my questioning started AFTER she took the IV out. I had to get another one to deliver the Metho via a push. Who knows how it will be delivered next time. Something to look forward to....NOT!

They gave me all the warnings with this new drug. They aren't sure what it will do to my already low white counts so I need to pay particular attention to infection...fever. He also doubled the dose of my anti-nausea...that doesn't sound good...does it?! I will have to wait until next week to find out what a full dose is like....so far so good on the "left overs" :-)

Tomorrow I travel to Cedar Sinai to see the Sarcoma expert. Dr. Forscher is the doctor that I have been fighting my insurance to go see but they always say I can get the same treatment from a doctor in my network. While I don't disagree with that statement...it is the experience that I am after. Someone with experience with and knowledge of desmoids could direct treatment that I could receive in network. I will go in as a cash patient and fork over the nearly $1000 to get his expert attention. Wish me well!!

Delicious dishes this week from the Ramirez, Milton, Woo-Sam, Gibo and Hanano families!! Thank you all so very much! It is a treat, especially on the days when I have treatments. They are generally a fog and it is very helpful to be able to just go to bed and crash. You pick up the slack for me and normalcy remains for my family. Thank you...Thank you...Thank you!!