From Darkness To Strength

[Today is my 39th birthday and I’ve spent it doing what I love most (aside from spending time with my family).  I’ve spent it writing, writing this blog post that I hope you will find ultimately uplifting.  Thank you for all the incredible messages of support.  I’ve not been able to respond to most of those messages but I will try to get back to everyone.  Thank you in particular for all the offers of help.  I will let you know when I need to accept those offers. 

As a quick medical update, I went into the infusion center two weeks ago, fully expecting to start Folfox, but Dr. A.C. had spoken to Dr. Marshall, and Dr. Marshall advised against doing Folfox and instead proposed a gentler and easier regimen of Xeloda (the oral version of 5-FU) and Avastin – 1000 mg of Xeloda twice a day for five days on and then two days off and an Avastin infusion every 3 weeks.  Dr. Marshall likes this regimen a lot because even though it tends to just maintain the disease rather than shrink tumors, it keeps patients relatively healthy for a long time and therefore good candidates for surgery and clinical trials.  Dr. Marshall wants me to look for immunotherapy clinical trials—the hunt for immunotherapy clinical trials will be a joint effort between me and Dr. A.C.  He felt that I should save the Folfox for when I really need it because it is a pretty harsh treatment.  I’ve heard from others that Dr. Kemeny at Sloan likes Xeloda and Irinotican for lung mets while Dr. Lin at Seattle Cancer Center likes Folfiri .  Dr. Marshall, Dr. Kemeny and Dr. Lin are all famous for their treatment of colon cancer.  It’s very difficult to deal with so many opinions, although ultimately it’s just evidence of how no one really understands this disease.  My oncologist is not a specialist in colon cancer.  He’s more of a generalist in solid tumors and is most famous for lung cancer.  So I’ve wondered whether I should switch to Sloan.  At this point, I’m unwilling.  I may try to get a formal second opinion from Dr. Kemeny at Sloan but I really like the quality of care I’m receiving at NYU.  I can get a hold of my oncologist easily.  I email him and call him on his cell phone.  He’s incredibly responsive to my concerns.  From what I’ve heard from others, that’s simply not the norm at Sloan.  And most importantly, Dr. A.C. and my other doctors at NYU are invested in me.  That counts for a lot in my opinion.  More