My mom was diagnosed in October 2009. She had frequent urination and back pain, but a close friend who is a doctor ordered her for catscan with contrast and sure enough we starting hearing the possibility it could be cholangio. 2 days later we were in a hospital on Long Island with a liver specialist who performs surgeries and we saw some imaging of her liver. I'll never forget looking at the face of the radiologist as he was telling the liver specialist about my mom's case in front of me and my sister (he didn't know who we were as we were in the imaging room). "This one is really bad". Turned out my mom had a tumor the size of 75% of her liver. The doctor gave us some cold facts. It is important, because you need to know the facts. Just ignore the survival curves, because those aren't really facts. The surgeon wouldn't have a name for the cancer until he did a biopsy and then he would like to consider putting a stint and perhaps perform a liver resection but there is only a small chance he could do the surgery. We liked the surgeon, he was very compassionate doctor but we knew the importance of a second opinion. Especially since he said there was only a 50% chance he could do the surgery. And I'm a believer that its all about the power of thought. I wanted to hear something more like, "we're going to fix your mom". I believe in treating the patient not just the disease. I needed a doctor to perform but also to bring up the fight in my mom, so it was critical to choose wisely. So after frantic phone calls to friends who were surgeons, oncologists and doctors in NYC, most arrows pointed to Dr. Myron Schwartz (and his partners) at Mount Sinai. I admit, I resisted at first and thought for sure we should get over to Sloan. But it was put to a vote by the family and Myron Schwartz would be the our hero. Myron filled the role quickly, he was amazing as a doctor and as a human. He truly inspires confidence with his soft spoken demeanor and intelligence. After seeing the scan he told my mom without using the Cancer word (she still hadn't had it confirmed since there was no biopsy yet and had lost her identical twin to cancer the year before) that it was going to be fine. He said the surgery was risky but he thought he could do it and there was no other option. He said no need for a biopsy or a stint as those could just make the surgery more complex and there was no doubt of the diagnoses. He also managed to hug my mom who really needed it. Our hero. The surgery and recovery was not easy. The next several months were a dark period as the recovery was slow and uneven. Our next hero was Dr. Howard Bruckner. A true pioneer in research of GFLIP with cisplatin. He often takes patients that are turned down by other institutions. He believes in low dose multi-drug cocktails that are sequenced and administered precisely. My mom has had great effective and compassionate treatment that has saved her life. Bruckner has over 35 years experience as a clinician and researcher giving thousands of patients a better and second chance. I've met some incredible people over the last year (doctors, patients, nurses), even someone on this website that was successfully treated by Dr. Bruckner. What impressed me most was the passion, compassion and hope that comes out of that office.
But, to wrap up the story, we just had 1 year scan today and it was all clear. Her tumor markers look excellent and we're celebrating. We plan on paying it forward.
We're raising money for Dr. Bruckner's research at an event next week. You can check out the website at www.onelifefund.com. We plan on adding a section on testimonials, so if you've been treated by Dr. Bruckner, please go on and write a few words. As most people on this website have enough medical bills, I don't ask or expect you to donate. But a few kind words if you've been a patient will go a long way. Hopefully we'll have that section up tomorrow. I'm fairly happy about persuading the OneLife fund to donate money to Dr. Bruckner's efforts on cholangio. In past years they donated to Sloan. Each year they pick a cancer. I realize this post is long..so key takeaways 1) anything is possible 2) you need to be your own advocate 3) my mom is fighting and winning..you too can fight the fight and win 4) if things do work out please come back to this website and post because the information is invaluable for people at the beginning
---Think positive healing thoughts and envision recovery.