nur1954
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Marni – Just want to say that the brownies were not legal in our state. The medical marijuana (marinol) just didn’t work. A friend provided the brownies….I asked no questions. It helped John and that was all I cared about! I’m not suggesting anyone do anything illegal, but if I had to go to jail to have helped my son, I would have gone to jail. There are some things you just do……Peace to all – N
Thanks, Marion, for always keeping us informed. For those who care to know, John was prescribed “marinol” (medicinal marijuana)….it had little to no effect on him. However, he did indulge in some “brownies”….and those actually increased his appetite, helped his pain, and overall increased his mood. I believe in doing whatever one needs to do….and no one should judge. Just wanted to throw in my 2 cents…..
Tom & Ben – Wonderful news. I visited Luxembourg 35 years ago while on my honeymoon. Your message made me smile in so many ways. Best wishes – Nancy
Kim – Just wanted to mention that every time I hear your story, a chill goes up my spine. You are one inspirational person. I wish my son had seen Dr. Kato, but I’m so glad others may seek his help as a result of your posts. Thank you for always keeping others informed. – Nancy
Isellure – You really said it all…one case is never like the other. All I can tell you is that your MIL should NEVER and I mean NEVER have any pain. Pain can be managed and her doctor needs to know that she is suffering. This is unacceptable. The one thing I have always been thankful for is the fact that my son’s doctors would not allow him to have pain. They would change and increase his medications as needed. I am not sure how the doctors determine “slow growing.” No one ever gave my son a timeline. I know Mayo has a good reputation so I hope she will be given something to help with the pain. If she reacts to the pain meds, she needs to tell the doctor….there are many different options to treat this problem. Good luck and keep us posted – Nancy
djl888 – I live in NJ and my son was seen in Mayo Clinic, Rochester, MN (which is a tough trip to make from NJ) but many great things have been said about Dr. Kato in New York Presbyterian. Sloan Kettering is also a great choice. My son was treated at the NJ Cancer Institute (associated with Robert Wood Johnson) for his chemotherapy. If you can get in with Dr. Kato, he seems to be the man that folks go to when others won’t operate. If you ever need to chat, my email is nur1954@gmail.com I certainly understand how difficult this is….I can let you know how we did at various hospitals. Good luck ….Nancy
This is such a difficult subject. Some people just don’t or can’t deal with such an overwhelming diagnosis. I know for me — I would never have changed having John move home with me and his Dad so I could take care of him, but he wasn’t married and I guess things were a little different because of that. I agree with Lainy….don’t waste the energy on those things right now. And I think you are right, Missy, that those people will regret it later on. But there is nothing you can do to change that, so focus on Kevin right now. People do feel like they are intruding sometimes, so a phone call telling his folks that Kevin might enjoy a visit might help. It’s all so damn hard!!!! Thoughts are with you – Nancy
Marion – Dr. Geschwind is quite the man, isn’t he? He was the doctor who did John’s two chemo-embolizations. We were very impressed with him and his knowledge was invaluable to us at the time. What a nice guy! – Nancy
Linda – Cholangiocarcinoma is very varied in each patient. We have seen on this website folks who have only lived 3 weeks from diagnosis and those that have lived 7 yearts….and some even cured. There is no straight forward answer to this, and I think that’s probably a good thing. Many other folks will say it, especially when it comes to “cc”, none of us have an expiration date stamped on their feet.
We are all glad to listen and help you as things moved along. I under M.D. Anderson is a wonderful facility. Wishing you and your Dad and family nothing but the best – Nancy
Charlea – Wow! 150 miles roundtrip….you are a trooper! Here’s hoping gas prices go down soon! Your messages always wind up bringing a smile to my face. You have an incredible attitude that is to be admired. Hugs – Nancy
Dear Rhoda – I join everyone else here on sending condolences on your loss. Your message hit me in my heart since your Uncle Tracey passed on what would have been my son’s 32nd birthday – St. Patrick’s Day! I will keep you in my thoughts and hope that you and your family are sharing wonderful memories of your Uncle — today and always. Best wishes – Nancy
Dear Sir – Hospice does not meaning giving up. I think Hospice can be a very option when some medical options are no longer valid. I think that is what Joolz was referring to. No one on this website ever gives up hope…that is why we are all here. We are all very open to our thoughts and I hope you know that we all care….very much….so here’s to every single day of living life! Hugs – Nancy
