Oriontj's post yesterday made me gasp...at first... but still offers hope

It's not that I haven't felt just as bad for everyone else here who has posted about disappointing results, but, you see, Oriontj's April 2, 2010, post, which I printed out and taped to my wall nine months ago, is the first one I read after I was finally, officially, staged IVB (on April 1st – haha), incurable and inoperable, squamous cell carcinoma, with mets to the nodes, including under the clavicle, just like her husband. She said “ct scans showed no cancer anywhere”, and told me there was hope for Stage IV. I began treatment 3 days later with some optimism.

I didn't visit this site again for several months after that. Radiation ended in May and I had my last chemo session the end of June, and then just before my first post-treatment scan in August, I was full of apprehension, and checked this forum in the hope of finding some good news, and whataya know, Oriontj posts on Aug. 6 that latest scan again showed no cancer. And my scan a week later was also good. So I continued to feel some special connection.

And even now with the latest news that “Tom's cancer is back”, beyond the obvious disappointment that I and everyone here feels for Jan and Tom, beyond my initial shock and the reality-check on my own situation, I am reminded and reassured that, at least for some of us, Stage IVB is a treatable and manageable disease, even if it's not curable.

I'd like offer my own form of hope and optimism, just like Oriontj gave me, to those newly diagnosed with Stage IVB. Of course, my story does not offer hope of a cure, but I can say unequivocally that there is life after a IVB diagnosis. And in my case, it continues to be a good life.

I am fortunate because I have not shared many of the devastating effects of this disease that so many on this forum have. Aside from the normal side effects of chemoradiation (don't get me wrong – it was bad, nearly intolerable), I have not required a feeding tube or stent, I don't have problems with swallowing or eating, or bleeding or pain, or any of the other problems associated with surgery. In fact, I don't have any on-going medical problems at the moment and haven't had any since chemo ended 6 months ago.

In some ways, I think being inoperable was a blessing in disguise.

I did a lot of traveling in August to visit far-flung family before going back to work full time in September. We have just celebrated the holidays with the same excess we always have, surrounded by family and friends and lots of love, warmth, laughter, food and drink. Next month, we're going to the Caribbean for a couple weeks, for the vacation that we canceled last April.

I am mindful that many on this forum have not been doing well, and so many have been taken by this disease even in the short time I have been visiting. But I want to let the newly diagnosed out there know that it is not all debilitation and pain, that a return to a normal life is not out of the question. As we approach the new year, I am grateful for the renewed life that I have, and I am looking forward to enjoying the months to come.

I don't mean to sugar-coat this. It's a tough adjustment to think of your life in terms of months and not years, and I can't even begin to describe the disappointment and heartbreak I feel when it occurs to me that I most likely will never know my grandchildren. But the initial sense of fear and hopelessness has subsided, and I find some joy and contentment in every day.

And when I read a post like Oriontj's last one, I am (perversely?) excited about the fact that her husband is starting a new treatment regimen. I hope Jan posts some details about it and keeps us updated on Tom's progress. There is no standard second line treatment for stage 4 EC, and very little information on squamous cell carcinoma in particular, so every little bit helps. I can't say I'm in "remission", but I am stable for the time being, and realistic about how short-lived this period can be, so I will continue to follow every post she makes.

I wish Jan and Tom and everyone else here a better new year.