Very long exhausting day...YET Im still up
Tuesday, February 12, 2019
Avastin ? Radiation therapy saves countless lives, but in rare cases, it can cause a debilitating, long-term complication when used on the brain. Around three to five percent of patients who receive radiation for brain tumors, or arteriovenous malformations (AVM), develop radiation necrosis, where the brain tissue around the targeted lesion becomes injured and dies.
Who knew this? When I received all my intensive treatments, first my 30 treatments, it was to kill whatever cells might have been left over from the first resection, well that didn't work. The 2nd one appeared 6 weeks after surgery, while radiation was just starting. They upped the dose for the latter part of my treatments and it seemed to have worked. I was free. Excited as they all were that they finally got to study some rare fish egg jelly thing that they peeled out of my head and got to send away pieces all over the place, write articles about and do talks on, I was just thankful for kind and loving doctors with precise fingers and a hospital with state of the art facilities.
Tumor Number 3 showed up when I was getting my life back together. Working again, doing awesome actually, business up and running stronger than ever, 7 employees, 6 days a week and no one was complaining about anything. That one was taken out, another specimen to study.. I was less excited, but thought, okay, what the chance of anymore, they were confident that was the last one.
Then came another one, Only this one couldn't be removed, so they had a big meeting with a very big tumor board, and due to the kind and aggressive behavior of the type, decided they needed to do something immediately and aggressively as the tumor was doing to me. so a full bore of radiation treatment in one day. To stop growth and kill its dna for good.
We talk risks, I heard necrosis as a possibility, yet they were not confident that would happen, but if it did and caused problems later in life, it could be surgically removed, my surgeon could open my hatch door and pluck it out. Simple right?
here I am not even 2 years post radiation therapy, and necrotic tissue has caused a Tonic Clonic Seizure on my left side as my right side of my brain controlling motor and sensory is damaged.
Now I am no dummy and not naive either. I have been at this game of tumor life and cancer treatment centers for a long time now. I know what to ask, how to ask, how not to break down and when its okay to flat out have a panic attack in front of any particular kind of doctor. I am the "okay" girl. That was the answers I gave them every time when they told me something new in the beginning. I trusted them with my life, I knew the specialists and I knew they were there for me, not for the hospital or the insurance companies, I knew each time he touched my hand, he meant business and I was okay with every decision he made for me. yet when things kept going wrong, no fault of theirs, I started getting weak and panic, anxiety, fear for not just my own life but fear for my children's and grandchildren's lives were now at stake I felt... I was feeling like a DNA time bomb.
Today the(n-o) neuro-oncologist is taking me down off the decatron, the side effects are doing more damage than good, my husband asked a straight question to him... HOW WILL I, A HUSBAND, NOT A DOCTOR KNOW IF SOMETHING IS GOING WRONG ONCE WE START LOWERING THE DOSAGES. Doctors response? OH you will know! What the heck does that mean... is that medical jargon that I forgot in the past 7 years ? My oncologist was there thankfully, I started having a meltdown and refused to go off the medication, last thing I want is another seizure to paralyze my left side again, end up in the neuro icu an hour from my house. once the dumber left the room, I was calmed and told I could regulate the medication as I saw fit but I was not going to go from 100 to 0 in a few days but cutting down.
I have not much confidence in my n-o yet complete confidence in my oncologist.