I wasn’t expecting it so soon. The sad news that a fellow zebra has earned her angel wings. I didn’t know her personally and was late to her story, through her Caring Bridge website but got caught-up in her strength and drive to CURE her cancer!
Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)? I know for Sara, her choice was exactly what she wanted. She fought for it. She moved to another city. She battled her insurance company for approval. It was her only chance for an actual CURE.
Sara was dx’d with mid-gut carcinoid cancer w/mets to her liver. Stage IV. Same as me. She had surgery, sir spheres and PRRT (in Germany). She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors. She was told if it wasn’t for her liver, she wouldn’t have cancer! I know that feeling although I’m pretty sure my tumor burden is much less than Sara’s was.
Sara decided to seek out a liver transplant. In her quest to find the BEST, she found two top notch transplant surgeons. One told her he won’t do liver transplants on Carcinoid patients anymore. Why? Because 40% of the time it recurs in the liver. His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor. It’s was described as somewhat like changing the engine of a car. There is only one place, I believe, that does them and that is the Miami Transplant Hospital.
I’m not going into too much detail as it’s not my story to tell. Sara sailed through the transplant. She was released from the hospital in a few short weeks. She then developed GVHD (graft-vs.-host disease). I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn’t know it could happen with organ transplants. It does make sense. I thought of rejection but GVHD is different. It is where the donor organ(s) fight for dominance with the hosts. It looked like Sara was winning her battle but then things turn for the worse. She died this morning.
She leave behind a loving husband and two beautiful daughters. My heart breaks for them.
I’m not sue what I would do if given this option. Take a chance for a cure? Or take the chance that my cancer will remain slow-growing (until it isn’t), which could be 5, 10 or 20 years?
I know from reading Sara’s blog that she made the right choice for her.