Shaping A Legacy

[I wanted to preface this post by providing a very brief medical update. I had my first scan post-HIPEC surgery last Friday, a PET scan, and received the results this past Monday when I went in for my fifth round of Folfiri. My scans were clean. In much the same way that I received the news of my previous clean scan in January, I’m relieved more than happy. I understand quite well that scans are flawed in detecting cancer growth, particularly in the peritoneum which is my area of concern – after all even though my January scan was clean, the HIPEC surgery in March revealed that I had three small peritoneal mets. I’ll be taking the scans to my HIPEC surgeon next Wednesday to ensure that he sees nothing amiss. Folfiri on the whole is going well, despite a rocky beginning after the first round with the chemo aggravating a partial bowel obstruction (a post-surgical complication which the PET scan confirmed as having resolved) and after some issues speaking during the second infusion. Folfiri makes my eyelids twitch during the last half hour of infusion and my mouth feel funny, like my tongue is oversized, which makes it hard for me to enunciate when speaking. These reactions resolve within less than an hour after infusion is complete, so I’ve just gotten accustomed to them. My CEA rose significantly after HIPEC to a high of 14.1 around the time of the partial bowel obstruction and has since been going down. I like to think that the elevated CEA is a reflection of post-surgical inflammation and cancer cells dying rather than tumor burden. My HIPEC surgeon told me that CEA readings cannot be relied upon until three month post-surgery. We’ve just hit that mark. On Monday it was 6.9, so it continues to decline which is what matters. Now onto this post, which leads to a big announcement…]

I’ve often heard people say that within every lie is an ounce of truth. I think the same concept applies to acts of kindness and goodness – within every act of selflessness, there is (at least) an ounce of selfishness. It’s something I’ve pondered over the last year as I’ve sought to find (or more likely impose) the good or purpose, if you will, in me having cancer. I’ve gone to Washington, D.C. to dabble in lobbying Congress about colorectal cancer-related issues. I initiated a successful effort to secure very valuable advertising space at no cost on the electronic billboards in Times Square and Penn Station for the Love Your Butt campaign during Colorectal Cancer Awareness Month (thanks Cousin N!!!). I helped start the only in-person support group in New York City exclusively for colorectal cancer survivors and their caregivers (which is thriving). Two weeks ago I spoke on a panel at NYU about cancer survivorship (the Youtube video is forthcoming). I’ve poured my heart into this blog, in part to help others who are suffering with the same disease or other life challenges. No doubt, everything I’ve done has had an altruistic, albeit probably very attenuated, effect of saving lives or comforting those hurting. But the truth is that my good deeds have also served me well for they’ve made me feel good about myself as a human being; they’ve made the fact that I have cancer seem less senseless; they’ve dulled the anger, soothed the fears and pushed me out of my personal darkness; they’ve led me to a community of people (some of whom have become genuine supporters and friends) who understand my disease and pain; they’ve given me some comfort in the faint belief that as part of some karmic order of balance in the universe the global good I do and sacrifices I make will spare Josh and my girls from all the horrible things that could happen to them. So, while I do all this because I truly do want to help, I also do it to help myself. Such contradictions are part of the complexity and nuance of human nature.


The Secret

[Continued from previous post]

There’s a Secret I’ve been harboring for years, something I’ve known from the time I was a baby in that part of the soul that remembers all trauma even before memories can be retained by the consciousness; it was then confirmed to me ten years ago. I’ve let the Secret out over the years, little by little to a few members of my family and friends, but it certainly isn’t public knowledge. I’ve always known that at some point I would release the Secret into the world as part of my healing process; until last July I just never thought that healing process would have anything to do with cancer. The Secret has hurt me in ways that few can imagine. Ever since my diagnosis, I’ve redoubled my efforts to find a lasting peace with the Secret, feeling like doing so would yield hidden truths that would aide me in this war against cancer.