Monday, July 23, 2012

La vita รจ bella!

I blogged this ages ago and for some reason it did not post, this is what happened when I had a reaction to the Votrient but was unable to get care because my Neuro-Oncologist, Dr. Barth, prescribed me a drug off label and then closed his office without any further instruction. Several people in my entourage (yes, I have an entourage) expressed dismay along with me, but then also anger. I want to clarify I am not angry at Dr. Barth, quite the opposite, I am grateful I was referred to him before his office closed. In the short time I was his patient he accomplished something no one has ever done for me or anyone in my family before... he went off-protocol and tried something different. There is no cure for NF, no true treatment, but he is trying. I will be his guinea pig any day. So this is how it worked out a couple of months ago:


So yesterday my impatience won out and I called Dr. Barth's office to explain the entire rash debacle. The receptionist sat through my diatribe about breaking out in a rash from the Votrient and nobody being willing to treat me because Dr. Barth prescribed the Votrient off-label, he then transferred me to 2 other people who listenened to the same spiel, until finally I was passed around to a Nurse Practitioner. Yes! She asked a zillion questions and then prescribed a small pack of steroids and said if that does not clear it up then to call back and they will figure it out from there. Score one for me! So I am starting the steroids tomorrow morning, but today was a long, itchy, beautiful day. Mica and I had 6 hours to kill in Riverside while waiting for JT to complete his weekly classes at the charter school. We parked in downtown near Mission Inn and spent the entire day exploring the library, Mission Inn, and surrounding statues and art. The day was an entire moment frozen in time filled with Mica's hair swishing in front of me, her sideways grin at her own jokes, and lots of slugbugs and tickle monsters. It was the best day I have had in so long, and my heart is just filled up to overflowing from plurp kisses and shared giggles.


Back to the present...

I am still on Votrient, and now have a new neuro-oncologist who I really like. He seems modern and informed. He agreed to keep me on the drug, and I am feeling great. I plan to see stability or shrinkage on my next MRI scans in November. That is right, I said it, I spoke it, and it will be! Positive thinking may not change concrete matter but it shapes my perspective so that I can wake up with a smile every day. Why not?  La vita e bella!!
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