Well I had the meeting with the neuro oncologist, neuro surgeon and a nurse practitioner from the neuro surgery team. It took me some time to let you all know and post the outcome because I needed time to regroup and regain composure. The meeting was horrible! It was my worst nightmare coming to life. It was like a swooshing feeling overcame my body, sort of like an out of body experience. I wanted to faint. If I wasnt sitting I would have. The voices were echoing sounding near and then far. This wasnt happening. Maam we are very sorry but your husbands illness has rapidly progressed and there is nothing we can do. Surgery will not even help him at this time. They showed me the MRI, come here sweetie take a look. Do you see how its grown not only in the frontal love but even towards the back and the whole parietal lobe. It looked like a white foggy island in the middle of the left side of his brain. You see if we do surgery, I can only take out 50% of the tumor which will grow back before he even heals from the surgery. So traditional chemo and radiation after surgery wont work. (After surgery you have to wait a few weeks before subsequent treatments) and if I try to get more of the tumor out and start cutting little blood vessels that will just leave him in a vegetated state. Excuse me! What do you mean? The scan from 1/2 shows more growth than the scan from 12/17. So why wasnt this surgery done when he got here, before the statis seizures? And if he would have come to this hospital anytime but Christmas he would have had the surgery by now and be in recovery. You have to try. At least try. The risks of trying could result in him not making it through the surgery or getting an infection or bleeding after the surgery then needing another surgery to fix the clot. We want to focus on letting him pass peacefully. Would you like to have hospice here at the hospital or like to take him home. No! No he is not going into hospice or coming home without surgery. You must try, he would want you to. He even told you that in be office. Be aggressive, Im ok with the outcome as long as Im alive. Please I beg you. I havent showered waiting for you doctors to talk to me all these days, I have a 2 and 4 yr old that need him, and my mother came from florida to take over my household so that I can stay by his side. I am giving you permission to go ahead with the surgery along with the risks involved. I can not do that maam. Its just not ethical. Patients have a right to go peacefully. You are a grieving wife and have done all you can. There are stages and you are in the denial stage. Its time to let go. Pleaseeee I beg you. Sobbing hysterically. Please. We will worry about the post surgery treatments when we get there first just please do the surgery. You know he only has days left before surgery wont even be possible. Dr Desai you know Luis, youve seen his tenacity these other doctors dont know him. Tell them. Tell them he would want this please. Youre our only hope. You feel a connection with us, Im sure of it. Maybe cause your kids are 2 and 4 and you see how passionate Luis is about living. Every time he sees you he tells you in his most confident voice Im going to beat this cancer, I am! Im sorry hon, its just not possible. Broken. I sat there still pleading. As if I was talking and no one was hearing me! Why why is this happening. Why would you let someone die if there was even a small chance you could help them. Why? If hes gonna die anyway then let him die on he operating table. He would want that. He will not go out without fighting, just giving up. I told them in my heart I just know hes not ready to give up. I know he still has some fight in him. Not because I want to be selfish and continue this suffering hes enduring but because I know him and I know he would want to exhaust all options,at all costs! By this time my tears and sadness turned to anger. The surgeon said Ted Kennedy died of this and he has the best drs money could buy while his nurse practitioner was sitting there nodding her head agreeably. I said yes but Luis is a lot younger than him. And he said well Ted McGraw or someone. The nurse practitioner chimed in and said my father in law died of that and we couldnt help him. You die from this. No shit Sherlock and no one cares about your father in law right now. And I said theyre not Luis. Hes different. Hes special. Hes resilient in an extraordinary kind of way. And they didnt have you as a dr sir, Luis does and you can help him. Please. There must be some treatment he could be getting now actively if surgery wont work. Chemo avastin anything. I told them I guess I will have to go back to school to work in the medical field to help people like me. I have a degree in business but Ill go back to school if I have to! They had nothing to say about that. Aha I finally said something they couldnt control! Point for me. As the meeting was going no where and was just a sobfest of me literally begging using every last detail or medical term or rationale I had in me, they wanted me to say ok. Be it as it may. Never! That wont happen. Luckily Desai, the oncologist that was always on our side that has now been surgically swayed, said well we can lower the phenobarbitals and see how long he goes without seizures. If hes active and doing things on his own thats a different story. But right now hes in his own coma not a medical coma and hes not getting up. I said fine do that. Im not just gonna give up and watch him die. You know that if he starts seizing he will have to be put back on that medicine or may never recover from the seizure. Are you sure? Yes! I got up to leave (now they were wasting my time!) and she gave me her cell to call her with whatever I needed. I said thank you sir for your time to the surgeon and walked out with my box of tissues. And I didnt say anything to the nurse practitioner cause of her repulsive loosely stated comment earlier, yeah dr brehm isnt taking this case. Sharing with me that he was never gonna do it in the first place! Uh how dare she even say that. These drs are something else! Here I am thinking oh great hes in the best hands possible with this big name hospital. Wrong. Some of them dont even care. So going to need them prayers again... This time for a miracle! Back to square one. #prayersforlouie
Posted on: Tue, 06 Jan 2015 04:20:35 +0000
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