Karin Starkweather Santamaria is organizing this fundraiser.
I’ve known I had cancer for a few weeks now but was waiting till my meeting with the doctors today to hear my “game plan”. I now have Oropharyngeal Squamus Cell Carcinoma.
I will have to get a partial soft pallet removal and left tonsil removal and reconstructive surgery using skin from my wrist, 5-7 days in hospital minimal with tracheostomy tube and peg tube. I will be in critical care ICU on a ventilator until I can breathe on my own through the tracheostomy, then they will work on removing the tracheostomy and breathe on my own. Nutrition will be through the peg tube only. Surgery will be scheduled in 6-8 weeks from now. I will have to go through extensive speech and swallow therapy.
After speaking with the reconstructive surgeon 2/26/20 there is a plan update:
They are taking out the left tonsil, part of tongue, soft pallet, left side neck dissection, taking artery and skin flap from left arm to reconstruct the soft pallet and then taking a skin graft from my left thigh to replace the part on my arm. I will be in the hospital a MINIMUM of 10 days and will have months of extensive speech and swallow therapy. There is potential for the replacement artery to fail, loss of blood flow to the hand and the hand dying, chance of a fistula (random opening inside my body) heart attack, stroke, bleed out. Also they could open me up and see too much problems and then just close me back up and try to fight it with chemo but they don’t believe that will be effective
SNUC Round 2returns 2016:
UPDATE: I had a PET scan in February of 2016 which showed a small node in my right cervical. In a follow-up scan in April 2016 there is a new spot in the original cancer site but now deeper back near my carotid artery and the small node in the right cervical has now turned into a large cluster. I am scheduled to have surgery on May 27, 2016, to remove the spot in my sinus and a right neck dissection to remove all the lymph nodes on that side. There is a possibility that they may also have to remove my right jugular vein. They have given me a 20% chance of survival. I have been on disability for the last 3 years and, in addition, have been working part-time to survive. I am expected to have a 10 day recovery period if they don't have to remove my jugular, much longer if they do. After surgery they plan to re-stage my tumors and proceed with a plan that may include more chemo and radiation beginning approximately 4 weeks after surgery. Prayers are much needed and greatly appreciated as my chances of survival are greatly reduced. Thank you for any assistance you can provide. Xoxo Karin
SNUC : 2013
Original story; I was diagnosed with an extremely rare form of cancer on February 13, 2013, called Invasive Sinonasal Undifferenciated Carcinoma (a/k/a SNUC). I will require follow-up medical treatment for the rest of my life because with this type of cancer you are never diagnosed as cured. It can come back at any time to any location in my body. It is an extremely aggressive cancer that if not caught within a year is almost always terminal. You can read my story at www.snuc-cancer.org. I was also diagnosed with a brain tumor attached to the back of my brain called meningioma. I am currently on disability and medicaid has placed me on a medically needy status - which means I am responsible for the first $1,900 of my medical bills - MONTHLY. Any proceeds not used to pay my medical bills will be donated for cancer research to help find a cure for this terrible disease. Thank you!!www.snuc-cancer.org. I was informed today (4/25/13) that I have a 60% chance of surviving this cancer and that if it came back for any reason - there would be nothing they could do to help me. Funding is urgently needed to find a cure. Please help!!!