OK, so I am going to dump this here in hopes that it takes a load off of me. On Monday I found out the latest from test results. Friday was especially bad because I had a episode as we call them now that was absolutely horrific. I know of no other way to put it. The pain was so immense that I could not stop screaming or crying and to top it all off Megan had to be there. It took me 3 days to even start to feel some what normal after that one.
So I was not surprised when they would not give me the scan results Monday morning. Knowing that the only time they don't, is when something significant has happened. So I go to work and wait for the call. I leave work early to get the news and this is what I get, a bunch of I don't knows and it doesn't look good.
To be more accurate I am told that my brain shifted back into place all by itself on Friday with the help of one tumor pulling out. Wow a 1.25 mm shift and I am still awake and functioning, I am impressed with myself. The five tumors are shrinking at a good rate and don't seem to be showing any signs of slowing down. There is some brain tissue damage and it is a little worse than they originally thought. Looks like my headaches, balance,speech and memory issues are going to be permanent. I was kinda of expecting that. Then they drop the bomb. They do not know if my brain can handle another shift. They actually think it is likely that if the other 2 tumors pull out that it will severe my brain stem. Why I ask, because with 5 tumors shrinking and keeping my brain in a constant mode of adjusting ,which we are all in anyways I put out there. Yes they say ,but I adjust more than normal due to the tumors and my head has been through alot the past couple of months. This I already know, I was there. Then I get the news that maybe we all got a little over excited with the gene therapy. I say huh? Well we don't have answers and are writing the book by me, yup knew that too. Maybe injecting the tentacles the last time was not the best idea,because it has helped the tumors separate and leave nothing behind but in the long run with a cancer that regenerates itself so it is never fully in remission , the extra therapy may have been too much. Well there is nothing to do about it now. The damage is done. In theory the gene therapy lasts 90 days,which I am at the end of. But could it last longer? Yes. So where does this leave me. Do we do another round and kill of the rest of the tumors or am I stuck waiting to see if they will go away or regenerate putting me back at square one. The answer I get to this is, my brain has been through so much as of late that the pressure is unstable at best. I still have the bolt in place to adjust ICP . I think this a good thing, they think even putting the catheter back in may cause damage. Since things are still shrinking and changing no more gene therapy until I start to go backwards. It has become too dangerous to my brain stem. What about the 2 left,what happens if they pull out? Well there is a 90 % chance that will occur and along with a brain hemorrhage or a severed brain stem. as minimum damage All of which leaves me dead or a quadriplegic at best. So what do we do I ask. Wait,pray,hope and get your affairs in order. HUH? Make my living will, health care surrogate a regular will. Spend time with the people who matter the most. Work if I want to. um yeah I need my insurance.plus they don't think it will hurt me,will only keep me from being at home waiting for that other shoe to drop.
So I am left with my 10% chance of being OK and I know that number is a high estimate on there part. I have made my living will. I am trying to get over the fact that my life is down to a 10% chance of survival. But as the joker that I am, I have asked that if I have to be a vegetable please make me beer batter corn. I know I am not right and now we know my brain is not right so I don't give a damn if you don't think it is funny, I do!!!!
So I am waiting for my supervisor and boss to get back from vacation and paternity leave so we can discuss what they would like to do with me work wise. I want to keep working because I accept nothing else but making it through but I also understand I am a liability.Business is business and friends are friends. I am OK with this because it will work out how it ia meant to.
So I have had a few miracles thus far and I am praying for one more.
So as I sit here sobbing, all I can think is "What the F do I have to complain about?" I know so many people love you and are praying for that miracle and believing that you will once again defy the odds! I think you are funny and I don't even know what beer batter corn is, must be a Florida thing. I think you are an AMAZING mom, a courageous woman and an inspiration to everyone. Just the fact that you are willing to share so much of what you are going through, let me tell you, you have NO idea the amount of people that you are touching and changing their days and their lives. You have no idea that when my son is being a holy terror tomorrow at 4pm because he has apparently given up naps along with his paci, that instead of yelling at him like I did today, I am going to take a deep breath, think of you and thank god that I have that afternoon to listen to him whine. What I have learned in the past 5 weeks with our personal mini battle with cancer is that cancer doesn't discriminate, it attacks good, kind, loving, hard working people and you never know what the outcome will be. Routine things become complicated, things that will never work miraculously work, and your life is a constant state of turmoil. it sucks that you have to think about a living will, it sucks that Megan and Shane and your family have to see you going through this, it sucks that you are going through it but it is a privilege to read your words and see you fight for every minute, to see you struggle to maintain your "normal" life. So, thanks for having the courage to do that, I will forever be changed as a wife, mother and person thanks to you. Love you!
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