December 7th, 2019 I had an acute pain with nausea while at work. I abruptly left work and my colleague Ashley insisted I follow-up with my primary care doctor suspecting it was a gallbladder attack. She was so insistent yet I didn't wish to bother to do it. She convinced me otherwise, and I am thankful beyond measure!
I had an ultrasound one week later on 12/14/19 then a phone call on Monday, 12/16/19 from my primary care doctor stating "there is a mass in your liver. It may be nothing, it may be a collection of blood vessels or it may be much more serious." I remember thanking him for calling me with the results and him telling me he would place an order for a MRI...nothing more. Tuesday, 12/17/19 I had a MRI while I was at work (my colleagues kindly covered my patients). That afternoon I was in an ambulance on my way back from transporting a patient to AMC and my cell phone rang...it was my primary care doctor. 12/17/19...that is the day my life changed forever. I heard Dr. Weaver say "I am sorry, but you need a liver biopsy." I remember crying and consoling Dr. Weaver on the phone as he was upset for me. I remember the ambulance driver saying repeatedly that he wished he could provide me with more privacy. I remember nothing more of the conversation as I was crying too much. As I write this I am crying at the memory. It is painful to recall.
MRI's of my abdomen and pelvis ensued along with a liver biopsy on 12/27/19. I remember asking the nurse and tech if I could see the core samples obtained during the biopsy that she held in a sterile lidded container in her hand. The tech hesitated, started to decline and the nurse said "well she is a nurse, too" and then showed me the container. At that moment I knew I had cancer! The liver is very vascular so there would be blood in the core samples one would suspect. These instead were yellow from end to end. No blood. I knew the tissue obtained was not normal. My diagnosis was made in my mind, I just didn't know what to call it yet but would soon find out.
12/30/19, the diagnosis came in and confirmed adenocarcinoma. This is a generalized term for many cancers but regardless, it was a cancer diagnosis. I remember very little of this phone call from Dr. Allard-Picou, the surgical GI doctor at my home hospital. She apologized, said again she was sorry, said we would fight this and offered to answer questions. I did not have questions. How could I think clearly enough to develop any questions within my spinning mind? The next few days were a blur except one exceptional night where I spent the evening with my new boyfriend, the man who said when I told him I had a medical crisis I was getting evaluated so he didn't need to have a second date with me answered with that he wished for another date! The man who when I found out I had cancer, knew nothing more and offered him yet another opportunity to walk away as this "is not for you to shoulder" I told him instead said he would remain by my side, continue to date me and fight with me. New Year's Eve 2019 was a beautiful evening with my boyfriend, Lenny, the man who chooses to stick by me because he wanted to, not because he had to. I remember nothing of cancer and doctors that evening but instead remember falling deeply in love with Lenny.
January and February 2020 included tests like bloodwork, CT of my chest, two colonoscopies, an EGD, a PET scan, two trips to the University of Rochester as well as a requested referral to Memorial Sloan Kettering (MSKCC) in NYC. Doctor appointments, missed work, travel, tears, telling people in my inner circle the newest developments, hugs, tears again, prayers, more hugs, texts and phone calls, cards and support heard and received. I was overwhelmed by all of it! I still am at times. but I am thankful for all the amazing support! Unbelievable! Candy, Kara, Mary and my brother BJ going to doctor appointments with me so they could listen to the words I knew I would not remember as my eyes and mind became glazed over during these appointments. Mary, oh Mary...taking me to not one but two colonoscopies and making sure I got home safely afterward. January also included the final diagnoses made which is named Intrahepatic Cholangiocarcinoma (ICC). #screwcancer #cholangiocarcinoma
Intrahepatic Cholangiocarcinoma is a bile duct cancer. Cholangiocarcinoma can occur in just the bile duct (leading to the gallbladder), outside of the duct (extrahepatic) or in the liver (intraphepatic). It occurs in less than 1:100,000 individuals. To put it into perspective some numbers: Down's Syndrome occurs 1:700 births, lung cancer occurs 1:16 individuals, breast cancer occurs 1:8 women. Cholangiocarcinoma can occur as early as your 20's or much later in life. I have spoken with both ends of this spectrum as of late unfortunately. I have no risk factors for cholangiocarcinoma, yet I have the disease. Seems unfair but it's still the hand death to me. Most individuals who are diagnosed do so at Stage IV due to the symptoms not presenting until much later in the course of the cancer growth, usually when it has already spread. Because of this, the 5 year survival rate is very low depending on whether it is intrahepatic, hilar or extrahepatic but all 3 are < 25%. Devastating news! #screwcancer #igotthis
February 18, 2020 included a Portal Vein Embolization at MMSKCC, a 4 hour surgery to attempt to cut the blood supply off to the right side of my liver in order to force the left (or healthier) side of my liver to compensate and grow in anticipation of a much larger surgery called a liver resection on March 24, 2020. During the liver resection, the plan is to remove approximately 75% of my liver in hopes of removing the cancer and biopsy the surrounding lymph nodes (in hopes of them all being negative for cancer). What occurs after this? #screwcancer #teamtanya
I will be in the hospital at MSKCC in NYC for about a week, then back home. I will be extremely tired, unable to do much of anything the my surgical oncologist and other patients who have experienced this surgery tell me, that being exhausted is the status quo for months after surgery, sometimes having difficulty getting through each day without one to two long naps as the standard. Back to NYC for a two week postop-checkup. Then? Probably chemotherapy but how much, how often and what medication I am unsure yet. I am told that 100% of patients eventually have a recurrence of this cancer, many times already metastasized to other parts of the body. I am told that survival rates are very low for 5 years but there are some outliers, in both directions regarding this. I do know that I am up for the fight of my life, FOR MY LIFE. I do know I am remaining positive. And I do know I am not doing this alone...I have God, my family, my boyfriend and my friends who I feel their support, their hope, their prayers on the daily! I am beyond thankful to each of them. #screwcancer #herfightismyfight