Thank you all for reaching out to me! It means so much to know that I can always turn here for support and love
Lainy - I guess his colitis is a bacterial kind. The antibiotics are working as he hasn't had any pain in about a week. The antibiotics make him so nauseous that he can't get any food down. Are there any other ways to prevent colitis flare ups?! Tomorrow they are doing a MRI to see if a tumor is causing some sort of blockage of his colon which would result to the bacterial colitis. His intervential radiologist wanted an endoscopy to determine this, so I'm not sure why his oncologist ordered a MRI. Very frustating. His radiologist does not think this is the case. We need the colitis to clear up so he can continue treatment and get SIRT. My aunt is up here and has been helping out which is a huge relief. She is taking him to his MRI tomorrow which I am so thankful for, especially now that I am coming down with something which I hope is just a cold!
Kathy - thank you for your dear words. I think the hardest part about being the caretaker is that we forget to take care of ourselves. It is very hard to go through the motions of normal everyday life when someone you love is so sick. Your family sounds like an amazing bunch!
Caroline - your mom's story is so similar to my dad's. This is his first round with colitis, but he has missed two treatments because of it. He says the colitis symptoms are worse the the cancer symptoms. Go figure. I guess colitis CAN be that bad. I have been so nervous asking myself, can he really be in THIS much pain from colitis? Is your mom going back on the trial medication even if it's not working? What are her next steps? I pretty much have my dad convinced to transfer to Dr. Zhu. I looked up that clinical trial he mentioned to you, Nivolumab. I'm not sure if you've done much research on it, but it's considered a break through drug by the FDA because of it's huge success with melanoma. It sounds very promising - let's just hope it has the same results for CC! It's definately not off the table for us.
Clare - I agree. Nothing is easy. Not a single part of it. Sometimes I have to muster up energy just to call his oncologist. The lonely part is the hardest. It's not a lonely as you don't have anyone to talk to - it's a lonely in that no one understands the medical details like you do, so you don't have anyone to lean on for advice. My dad doesn't even know what I know about the disease and the treatment options/clinical trials, so I am left all alone to make these difficult decisions for him. It's not an easy place to be and it's a huge weight on my shoulders especially at only 33 years old. I have to stay strong - it's the only option!