The lonely disease.

I wasn't going to blog today but got on to check the weather report and saw my Kristina's comment.

THIS is how cancer kills people. Kristina, you put into words exactly what every test, every exam, every probe, every ache and pain, does to us. It is just the worst. I am so thankful that nothing showed up for you...and thankful they were diligent for you...but totally understand what you are thinking and feeling. Still not having my pap results back, I freak when the phone rings. It's all too much.

BUT, thank heavens for Xanax I guess. I am just sick for what you went through and understand why you don't want any more tests. I know all cancer survivors go through this is some ways, but with ACC, IF it shows up again, we have no options and bascially, while we may live for a few years, mayabe as much as even 10-20, getting ACC again is what will kill us. I don't mean to be a downer to anyone but I want to put into writing why this cancer is so bad. We all look fine, and even feel fine, but it's still there, that awful possibility. I think this piece by Alice Neely that I found late at night one night is very good to explain how this weighs on us. The scary thing is I have no idea how Alice is doing, so I don't even think about it.

A Lonely Disease

By: Alice Neely

What's scary about ACC is that there's really no one to talk to. Doctors either brush you off or send you home to make your will, your family gets terrified every time you reveal a new pain so you start staying quiet, and no one else in the world understands a cancer that can linger for years and haunt you and terrify you. The public is used to a dramatic diagnosis followed by surgery, chemo baldness and usually death in 2-3 years. We with ACC linger on and on, year after year. People get tired of hearing about our aches, pains and limitations. They lost that initial surge of sympathy they had years ago when we were first diagnosed. Most cancer patients would be gone by now but we linger on. Getting new tests and new evidence of mets.

And even then we don't get really sick. Our doctors say wait, nothing we can do, enjoy your life. We go back to living, trying, working, having relationships. But still it haunts us. WE know it is a killer. We know there isn't a good cure. We know our lung mets are now legion instead of 3. But the others who know us are tired of our dramas. Like the boy that cried wolf they've stopped believing in the urgency, they want to enjoy their healthy lives and they're tired of hearing about ours. Our brave lives of living in the face of fear and met knowledge. People get excited but then look for resolution, life goes on, their lives go on. Ours are a continuing drama of new test results, new pains and new trials. I think we just wear them out.

So who can we talk to? Our doctors nod with smiles and leave the room, our families get terrified so much so we have to calm them and our friends don't understand our fears. We look too damn good.

Of course it colors everything we do and feel; relationships, children, jobs, everything. None of them can know how influenced we are by knowing we have ACC. We live with it, we don't like it, but we're thankful we don't have something more deadly and rapid. We're the lucky cancer ones, so who are we to complain? We live years with ours when other are gone in a year. So what is our beef?!

We are alone, no one understands, no one can relate. How many times have all of us heard "Over 5 years ago? Well, that's good news! After 5 years cancer doesn't come back!" Well, that's with normal cancer, we say, ours is different and the longer you go, the greater the chance of mets. It's just a matter of time. They laugh and say "Oh, you're just worried. Think positive!" We do, we try, we think bloody positive every bloody day, year after year. But the mets keep coming and they keep growing and we keep getting more scared. So, who can we talk to?

Our thoughts only scare others. It’s just really not fair.

Alice Neely

diag. 1990, ACC salivary gland, 1993 neck resection, 39 weeks radiation

lung mets 2004, lymph mets 2005

Member of ACCOI’s free email Information Group: http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

However, to spin this in a positive way, because it is the only way to win, Kristina and I have ACC/breast (although I worry I have it in my neck) and we hope that the prognosis for this cancer is better than normal... We have to believe this Kristina and we have to tell ourselves "we are not going to die today." And then we have to live.

I want to cry for Kristina's experience because I feel it deep in my heart--been there--but instead, I will get going, get packing for camping, curse the weather report, and pet my dog.

And if that doesn't work, I will take another Xanax and live stoned. Those 70's people may have been on to something.

Molly