After having MRI's at NIH in December I sat with Dr. Asthagiri (the doctor in charge of the study)and went over my scans. His impression was that I am stable, and if you are a regular reader of this blog you already know how I feel about that. All of my tumors are growing slowly, but surely. Mofo, the brain stem tumor which I had treated with Gamma Knife last year, has supposedly not shrunken but stopped growing, which is great news in itself. Dr. Asthagiri is a wonderful doctor, but like any other profession there will always be differences of opinion. When dealing with NF2 it does not seem like anyone has the right answer, each of the doctors just do their best to prolong our lives with as little pain as possible. My regular neurologist is Dr. Duma, and I adore him. He has been my doctor since 2003, and before that he was my Mom's doctor. He saved her life at one point, and I will never forget that. Dr. Duma is the one who has helped me to form my long term care plan for NF2. We radiate any tumor that has the nerve to threaten me as soon as we are sure it is growing steadily. This differs from how most doctors treat NF2. The usual rule of thumb is to treat a tumor only when it is symptomatic. The problem that I have with that is once the tumor is symptomatic and you remove it, you do not necessarily recover everything you have lost. Most likely, it improves a bit, but you are forever altered, another chunk of your ability stolen by NF2. Over time those chunks become gaps, until you have nothing left to give. It seems to me that if you have measured growth of a tumor over several MRIs, then you know it is growing and may as well treat it while it is small and less dangerous. At this point another debate comes into play. Many doctors do not think people with NF2 should use radiation to treat their tumors. They say it does not always work, which is true. What they rarely mention is that surgically removed tumors can grow back just as easily as a radiated tumor can, and surgery has much higher immediate risks. The other issue is that by radiating the tumor it can become cancerous over time. In a healthy person with a random tumor that is a significant reason to have surgery rather than radiation. I personally feel it makes more sense for a person with NF2 to focus on immediate benefits and consequences, rather then delayed possibilities. Radiation is an outpatient procedure, and when used by the right doctors on the right tumors it can be highly successful. I have had 6 brain tumors and 1 spine tumor radiated, all stopped growing, and most shrunk within 6 months. Dr. Asthagiri explains this by saying every person with NF2 has their own tumor biology, and mine seems to be very susceptible to the radiation. He admits I have been very lucky. (really!?) This is not the case for all NF2 patients, unfortunately. However, I have to make my decisions based on my own history, which of course includes having watched my Mom have surgery after surgery, each one taking more than it gave. Every person in my family with NF2 has gone the surgical route, and every one ended up paralyzed, Deaf, blind, and dead before the age of 40. It seems to me that I at least have to try something different. It does not make any sense at all to follow the same path that has ended so badly before. So, against the advice of most doctors, I keep a sharp eye on every tumor and if it grows consistently I have it radiated while it is small. This method is at best going to extend my chances by a few years, and keep me running as long as possible. What we really need is a medication that targets the tumor's growth and stops them from growing or even forming. Otherwise the tumors will just play a game of Tetris in my head, building up slowly until there is not any room left.
In the meantime... after going over my MRI's with Dr. Duma yesterday we located 2 areas with tumors that are definitely growing and should be addressed now before they are too big to be radiated and would require surgical intervention. I am not having surgery, it is just not happening people.
In case you don't see the 3 headed blob floating in my head I made it easy to find. Several names have been tossed around for this 3 headed atrocity, but Cerebrus sounded too scary. The entire point of naming the little f*ckers (excuse my language Nana) is to make them less threatening. So meet the Power Puff Girls. They are going down. On previous MRIs these were 3 separate tumors, but with time they have grown and joined forces against me. I'll have gamma knife on 2 of them in February, but the area is too large to treat all at once, so I will have to have the 3rd radiated later on. Gamma Knife is amazing, and I am blessed to have it and avoid letting these things continue to grow or having a major brain surgery (although I totally need an excuse for a mohawk.) Gamma Knife hurts, they bolt a frame to your head. I am not looking forward to that, but it is only for a few hours and I will survive.
These are the Thoracic Chickens. When JT was just a baby I had a major spine surgery, Dr. Duma went in and removed every tumor in my entire thoracic spine. He couldn't even count them. Afterward my spine was as clean as I have seen it since I was a teenager. Now these f*ckers (sorry Nana) have the nerve to grow in on my nice clean spine. So every time I see them I think "Ain't no one here but us chickens." I added a chicken for extra emphasis on this point. Very scientifical. Anyway... these 2 tumors are actually working together to create a potentially awful situation. I will have them treated with Cyberknife sometime in February as well. Cyberknife does not hurt, it is the post swelling that worries me, but I will expect the best and prepare for the worst.
I was also momentarily diagnosed with a lung tumor, which on further investigation seems to be my heart, which is for some reason very large. Seriously. I then came home and opened my scans myself, and (mis)diagnosed my bladder as a huge pelvic tumor. At that point I just started laughing.
What else can you do?
5 comments:
You will take the Powder Puff Girls down!!! And the Chickens are just that..chickens...scared of you!!
It is enormously helpful to learn about the procedures from a patient's perspective. I've never had surgery or radiation on any tumors and I don't know if I ever will...? I'm glad to see you have a sense of humor about it as well. I named my acoustic neuromas Fat Boy and Carter Hayes, sometimes i'd call them dough boy or meat loaf but now that they're shrinking (from Avastin) they don't have names anymore. I hope everything goes well in February- kill those fuckers!!
ps It's great that you have a doctor you like. I love mine too!
I personally think you will get them mija "No doubt in my mind" You once told me you wish you could be more like me. No mija, Your stronger and more confident than i could ever be mija. So proud to have as my daughter in law.
aww thank you Mom! Coming from someone as strong as you are that means a lot!
I love you both!
I'm always excited on your new story.
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