Today was my first day back to work after the surgery in November. Stephanie and I just returned from New Orleans last night after meeting with my surgeon (Dr. Boudreaux) and the head of surgical oncology (Dr. Woltering) who heads up the neuroendocrine clinic. Dr. Woltering did not spend a large amount of time with us and wants to re-establish a baseline for me now that I have had surgery once again. To this end, I had 8 vials of blood drawn for various tests and will be getting a CT scan of the chest and abdomon, MRI of the liver, and an octreoscan again. We will then return to NOLA at the end of February and begin to formulate a plan forward with Dr. Rodriguez.
We are still looking at a couple of potential treatments. The chemo drugs that are being considered are Temodar/xeloda, Sutent, Afinitor, and a combination of valproic Acid and Black Raspberry Powder. All of these treatments seemed to have anti growth properties when tested against my tumors in petri dishes.
The last of these had the greatest response and we are going to be giving that a try. The downside is that Black Raspberry Powder is exactly what it sounds like. Black Raspberries are freeze dried and ground into a powder and you consume a given dose in a tea or some other method. The dose you take is 1 gram per kilogram of weight per day. This means I would take about 70 grams (equivalent of about 350 black raspberries), soak it in warm water, strain out the sludge the next day and drink that throughout the day.
Most of you know I am usually quite against 'natural' or homeopathic treatments but there is a large amount of scientific material supporting the use of black raspberry and the anti-cancer effects of this. Not to mention, this was directly tested against my tumors in lab conditions and resulted in slowed cancer growth. The downside is the price. As you can imagine, 350 black raspberries (about a pound) equivalent is a bit pricey. The best price I can find is about $300/month for this treatment and it is almost certain that insurance will not pay for this. Ah well.
The other little bombshell that Dr. Boudreaux dropped on us was that the consensus was to just give me reference material for hospice and send me back home. At first, you would think this is exactly what you don't want to hear from your doctor but after a few minutes of consideration, it is exactly what I did want to hear. The consensus was to send me home to die but Dr. Boudreaux decided to operate and the result of that operation has bought me some more time. How long has it bought me? I don't really know but I do know that I have quite a bit of energy now and am able to (and want to) eat voraciously right now.
My first ski day should be this coming Sunday, 1/20 followed by a 5 day (4 ski day) trip to Aspen, starting on 1/23. The week after we get back from Aspen, I will be able to return to the ice and my first day back as goalie should be 2/4 which is awesome. I am becoming accustomed to my new normal. It doesn't mean I have to like the new normal but I am able to live and even thrive with it. The first day of work has gone well and it is nice to start getting back into the swing of things.
