Yesterday Paul and I headed to Hoag Hospital in Newport Beach for a check up with my favorite neurologist. We slowly inched down the freeway, passing a van crumbled on the side of the highway while a big rig sat nearby unscathed. I tried to forget the images my eyes had briefly absorbed when I checked the MRI disk on my computer to be sure it held all the correct exams. I pushed the anxiety away and left it on the highway with the crumbled van...
We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.
Dr. Duma came in and we got down to business...
I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.
My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.
My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.
My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.
The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.
I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.
I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!
*I will explain CyberKnife tomorrow*
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Glad to see that you don't have any major growths right now. We think of you often
Interesting. So you are saying that in their 30s, your mom and grandma had new tumors keep showing up? Mine are also "too numerous to count" but it has always been that way since my first MRI. As far as I know, only 3 have grown since 1999 which are all schwannomas (I just found out what we had thought was a meningioma is now considered a trigeminal schwannoma by Stanford. That is the one which has grown over the past year).
I know what you mean about looking at the films. I have always looked at them but this year I just stopped. I get the disc but could not bring myself to load it onto the computer. It can be overwhelming and I am feeling great so I would just like to stay with that positive frame of mind.
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