My husband Andrew, my soulmate, the love of my life, father of my two boys has been diagnosed with cancer. Nobody ever wants to join this club but when you are in it you fight the fight. The start of 2020 has been doing just that. His cancer is known as NUT carcinoma. This isn't your ordinary cancer. It's extremely rare. In the United States, about 20-30 cases are reported each year. Prognosis is poor but we plan on beating the odds.
People always say don't google it, the inaccurate or exaggerated information found on a google search will worry you more. Well with NUT it’s not the case. This C word is so rare that there is not much out there other than the case studies which are in fact accurate, facebook page for the individuals and loved ones going through it, and physicians who are studying it.
After searching for the best treatment options, we can comfortably say our plan is a good one. Andrew has been undergoing radiation treatment 5 days a week since 12/31/19. It began with Photon radiation and we are now doing Proton. We also believe timing is everything. Just 8 months ago the closest Proton Center was Texas. Now there is a beautiful facility in Harlem and he is lucky to be getting it. He also undergoes chemotherapy for two days every three weeks. He has had two rounds so far and has one left. This cancer is often resistant to chemo however its supposed to enhance the radiation treatment so they incorporate it into his treatment. All treatment should be completed at the end of February and then he needs to recover. This is our waiting period where we watch a miracle happen and be a part of modern medicine. Andrew is going to make a change. This NUT will be cracked despite the odds. Like I said it's the only thing that makes sense.
If anyone has had the pleasure of meeting my husband just once they will only have nice things to say. His soul is sooo beautiful. He's kind and funny and just really THE BEST. Therefore in order to justify what is going on with him right now it must be to make his mark. They say that God gives you what you can handle and so I say we got this but please no more my Lord.
Now let me tell you how this all started. A couple of months ago he had a continued sinus infection. He has always suffered from sinus infections so nothing to be alarmed of, we thought. After a few visits to the ENT he was referred to an ENT surgeon contemplating removal of what they thought were polyps in his nasal cavity. An in patient biopsy determined it was more than just a polyp and as such a surgical outpatient biopsy was recommended. This determined he did have a malignant carcinoma. This again didn't seem like such a battle. Scary but not a real battle. Nothing we can’t handle, we thought. We anxiously awaited what felt like weeks for the definitive diagnosis to discuss our options, which we anticipated would be surgical removal and then treatment. Late December as we sat at the doctor's office awaiting the plan to remove and treat, we are told the definitive diagnosis was nothing that they imagined. In fact our first doctor basically stood up all night conducting research on this very rare cancer Midline NUT carcinoma. A cancer he had never heard about until Andrew’s diagnosis. In a matter of minutes we are discussing removing Andrew's right eye as it has attached to his eye socket along with radiation treatment. We headed to Sloan for a second opinion to find out that the tumor has invaded nerves that made it too risky for surgical resection. So with all the information we had it was determined to go to Sloane and treat this NUT. Now let me tell you we are lucky to have one of the best C word hospitals in our backyard. However, how discouraging is it when we are asked “what brings you here?” (a normal conversation opener at Sloan) and half of the staff and patients at Sloan have never even heard of NUT. The terrifying thing about this C word is that it either gets misdiagnosed and then too late to treat or diagnosed when an organ is being affected which is what happened to Andrew. A bulging eye occurred so rapidly as the tumor pushed against it. Prior to a symptom there are no signs and it's aggressive. We need to figure this C word out before it gets to that stage.
Well that's the story. It’s not even half of what we have been through however unless I’m looking to publish a book about it this will have to do. Andrew is fighting for his life and is doing great. We have been showered with love and concern by so many and it's been.....a good overwhelming. After treatment is complete we will be heading to a hospital in Boston. The only facility in the 50 states that currently has a trial on this specific C word. Again, this all means something. Protons miles away and a trial a 4 hour drive away. We are going to kick this C words ass. Thank you everyone who has reached out to us. It means the world. The main thing I ask you all is to pray, send positive energy, and keep us in your thoughts. Those vibes coupled with medicine is what will get us through this dark tunnel. We need light and love ? I wish health, love, and happiness to you all. Honestly from the bottom of our hearts xoxo