Wednesday, September 23, 2009

Rule Brittania, City of Dopes Redux and My Breakfast with Kathy

Morning folks.

I think I had mentioned that BB nonchalantly suggested I lose a large amount of weight which, upon further consultation and showing him the size of my calves, was "dose reduced" so to speak to around 15 pounds. I'm energized to do so.

While I was in Little Rock over the summer, my intrepid two-year-old son somehow managed to adjust our digital scale so that it reads out in stone. That's right, stone. I actually think this is so funny that I'm not going to try to change it back. I currently weight 13 stone 3, and my goal is 12 stone! Hahaha!! I love saying that. All British measurements are fantastic. I seem to recall that the "foot" came from the literal size of a certain ruler's foot. I wonder if Henry VIII had an enormous kidney stone? :) Or perhaps some less hefty king was able to lift a rock weighing precisely fourteen pounds and smart advisors noted that this was the most one person could possibly lift and thus it became the proper unit of measurement.

I am at a bit of a lull in between therapeutic measures right now. I'm just taking acyclovir and tamiflu on a prohylactic basis. My energy level is beginning to improve as red counts increase. I spoke with my primary care doctor PZ and in light of the arterial damage and enlarged prostate courtesy of the chemo, he wants me back on Lipitor immediately, and to order regular PSA tests along with the rest of my bloodwork. So I'll start to incorporate those.

I had a lovely and lengthy breakfast meeting this morning with Kathy Giusti of the MMRF. I've written about her before, but the influence this woman has had on the future of Myeloma cannot really be overstated. In fact, other than doctors performing the research, I have a hard time imagining any one person being more important towards developing a cure that involves a bit less than what I've been through. We patients have her and her organization to thank for the rapid development of carfilzomib (next generation Velcade) and pomalidomide (next generation Revlimid) which will be the drugs that I may need to fall on if all of this current treatment fails.

I met with Kathy to thank her for her early counsel and also to ask, rather directly, how I might join the board of the MMRF. This is, I gather, not the first time she's had such a request. I do think I bring an interesting combination of skill and perspective to such a situation. That said, they don't really lose board members, and membership is a "give/get" situation -- meaning board members must either donate sizable amounts of money for the privilege of sitting on the board, or must raise money from other sources for same. I don't particularly like flogging people for money so this isn't in my sweetspot, exactly.

Having said that, we also discussed a potential venture capital model for spurring ongoing research and I think I brought a few good ideas to that conversation. I will likely be helping the MMRF to flesh out these concepts a bit, and potentially working with the head of their west coast operations, perhaps on a regional board or something along those lines. Whatever the case, it's a start in my efforts to direct some of my energy back towards helping find a clear cure for this disease.

Lastly, the administrative frustrations with City of Hope continue. I am scheduled to begin my maintenance therapy with GD on 9/29. I was also scheduled for a CONSULT ON MY PORTACATH (the reason for my frustrated all caps will be explained shortly) at City of Hope on 9/29, and to see Dr. SF while there. The consult was to be at 11AM, the appointment at 1:30.

Normally, I will see GD in the afternoon, but when I went to change this one appointment to the morning, I wasn't able to -- evidently 9/28 is a Jewish holiday and that means 9/29 is packed solid.

No problem, or so I thought. After all, I can get my Velcade at City of Hope.

Long story short, four phone calls later, they still think I have a Hickman Catheter (not the same time as a port). They still think the 11AM consult is actually a removal. They will draw labs, allegedly, but they won't be able to dispense Velcade until after the results have been reviewed by SF. And the appointment with SF isn't until 4:30PM now. So the best I can hope for is they'll have to stick me twice, which is an issue given how damn painful this stupid portacath is. They STILL don't understand what I have in my chest (a Hickman is what I had in little rock and it can be removed in about ten seconds; mine is surgically embedded under my skin and is a totally different animal -- it has to be removed under anaesthesia).

I'm not holding out hope for much other than extreme frustration out there -- probably accompanied by more people thinking that I need blood pressure meds as a result of dealing with their own incompetence. Grrrr....

2 comments:

  1. Nick,
    Glad you are doing well.
    Re: you comment about the MMRF and "flogging people for money", you may need the gentle reminder it is corporate and grass root fundraising effforts that have allowed Kathy to be empowered to escalate the development and approval of novel MM drugs. I am very proud to say that over the years my daughters and I have been able to raise through fundraising over $40K for the MMRF, and know for a fact that people have donated generously because they too believe in this cause.

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