Radiation was unsuccessful and caused tumor growth in 2011 at UNC Chapel Hill. Thankfully I am an Air Force veteran and the VNA helped pay for my medical care at Duke through 2013. I've had my left carotid artery replaced and sacrificed my left vocal chord in 2013 at Duke because I was within several weeks of a major stroke. On a great note, the tumor was mostly removed. Later in 2013 I had another tumor resection at Duke. However, it couldnt all be removed because of the location of a nerve. I also have a tumor on my brain stem that is growing faster than expected.
When a cancer is rare there is not a lot of funding for research. I wasn't a candidate for one trial but I've been accepted into a new clinical trial with only one site in the US located in Houston. I've undergone the testing at Duke for this medication. My tumors do absorb it and should cause shrinking or cease progression of growth. This is my only chance right now. What would come next is a permanent trache and feeding tube in the near future as well as new tumor development throughout my body.
There is no need to share everything that is wrong with me, but I can tell you what is right with me. I still try to sing (against my friends and family's wishes) with one vocal chord. I still love to laugh until I cry. I've learned to appreciate the sunrise and another sunset. I still have the compassion and understanding to know that there are many people in a worse situation than I am. I have a strong will to live and have done my best to maintain a positive attitude. I need to be here for my son Nick.
The clinical trial requires all expenses to be paid for up front prior to each treatment. Additional costs include airfare, car rental, food and lodging. Unfortunately I am permanently disabled and not in the position to cover all of the expenses that are going to be involved throughout this trial for the next two years.
It's totally not in my nature to ask for assistance with anything if I can at all help it. But I'm not ready to become that debilitated not if there's a single chance out there that I can do something to stop it. I have swallowed my pride and asked for your assistance. Please consider making a donation to help me.
I have head and neck lymphedema as a result of being on bypass during the carotid graft and must wear this full beautiful face mask while sleeping as well as doing continual manual drainage throughout the day. I have been in physical therapy at PT for Women every week for over a year to help maintain the lymphatic drainage and assist with repairing range of motion and nerve damage as a result of tumors and radiation.
I really hope that this medication works when it's all said and done. It takes its toll on my family not just me. My son Nick has been coming home from school for quite some time only to be quiet and tiptoe bc he knows his mom fell asleep trying to wait up for him.
I have two more treatments left and then quarterly trips to Houston for the next two years for follow up for a total of nine more trips down here. I can't even think that far in advance because it's too overwhelming. For now I will keep taking it one day at a time.
Thank you to all of you who have donated and/or passed along words of encouragement to help make this treatment a reality. I really can't say thank you enough for helping make the first treatment a possibility. It's so crazy how much of an effect cancer can have on someone mentally, physically, emotionally, and financially. Thank you again for your continued donations and support.
The next couple of months will consist of scans back at Duke and bloodwork before returning back to Texas May 31st for my second go round. For a treatment that is supposed to work, why does it have to be so darn crazily expensive?
Nevertheless I'm ready to go home.
Marcy, you are such a brave person, you are a true inspiration to. Know that you are in my thoughts and prayers.
Ur always in my thoughts & prayers, throughout each & every day. Ur on ur way to getting there & we'll all make sure u arrive to get the treatment u so desperately need. I know u have a huge support system but if there's anything I can personally do or help u with, it'd be my pleasure. Love u SOOOO!!