The Truth

As many of you know, I have been battling pancreatic cancer for a little over 3 years. I've undergone the Whipple--a 'bitch' of a surgery. A radio-frequency ablation--fairly routine. And a chemo-embolization--like anything with the word chemo associated, not fun. IN between I've spent many weeks in the hospital for side effects, tubes placed, blood diseases, complications, etc. 

Finally, the specialists all agree it's time to remove 2/3 of my liver.

That's the VERY SHORT history. Think TV show "HOUSE" for how it's really been. : )

With that context: Several people along the way have complimented me for being a fighter, brave, a survivor, gracious in my disease, positive in spite of it all, on and on. I appreciate those comments. I'd rather be known for that than being bitter, a defeatest, angry, etc. At the same time those comments have made me think--am I being real? Do people perceive that only because I post when I'm well vs. ill? That I only share the good stuff--since I know most don't want to confront the bad? Am I being honest?

All good questions.

So I thought I'd take a few minutes and tell you some things that perhaps I haven't expressed before. Some that might share more on how I really feel.

Here goes.

Cancer sucks. Having it sucks worse!

I am really mad at cancer right now. I have always been mad that I have it. But in the past few weeks I've seen too many I know newly diagnosed--all people like me. People you'd never expect. Nice people. People who don't deserve the plight, not that anyone does. It's been hit home from another side. I used to 'know of' people with cancer. Now I know too many acquaintances suffering from cancer. It's really pissing me off.

Why does this disease need to be so insidious, so unfair, so belligerent? Why does it affect so many families? Why isn't it being cured? Yeah, I woke up this morning really mad, at cancer. I hate you cancer. I hate you.

I'm not a noble fighter.

So many like to romanticize the idea of a person battling all odds and fighting off death. I don't believe that's 100% accurate. I've found you have little control. Yes, one can think positive, set goals, aspire (to stay motivated), but it's mostly taking a day at a time and hoping the body cooperates. So I don't think of myself as a victorious soldier as much as a stubborn scrapper who does his best to get out of bed every day, that's all. One step, one day at a time. That's all the fighting I can do. I'm not noble.

I'm certainly not positive all the time.

Ask my wife, Karen. She'll tell you how many days she's held me while I bawled like a baby--from fear my grandson would never be able to remember me, or that I'd never be able to enjoy all that I've worked so hard for, or...    Believe me...having this cancer scares me! Especially when the docs keep referring to 'buying time' vs.talking cure. So there are plenty of hours where I lose it and imagine the worst. My days are emotionally draining--hours of tests, consults, specialist after specialist. It wears me down. I have my moments.

I cannot survive on my own.

Wow, first lesson learned: if you're gonna have cancer you need family and friends. A STRONG support network. From a great sis-in-law who sits with me at 5 a.m. just to make sure I get my pain meds. To a daughter who send me pics of my grandson daily to cheer me up. To a son who buys me magazines for the down time. To a wife who bathes me and dresses me so I keep some pride. To a mother who, in spite of her own issues, wants to be with me to make sure I eat and walk. To a niece who babysits the bulldogs so Karen can be with me. To a b-in-law who grills me fresh fish when I am home. I could go on and on.

And having a primary caregiver (what a burden she carries) as my advocate. The docs know to call her. : )  Karen tracks all of my care and keeps the dots connected for me. I couldn't make it without her!

So whenever you imagine I am fighting, consider I have a dynamo behind me, pushing me, encouraging me, holding me. I have family who is here for me. I am not fighting alone. When I'm down they carry me.

I want to live for different reasons now.

I have been talking to friends a lot about, "Making memories instead of accomplishments". It's my new mantra. I no longer live to work. I work to live. (Cliche but true). I work to play. I live more of my family. I spend way more time with them. I appreciate everything. I talk to strangers. I hug people. I cherish small things. My life is way simpler. I live for the memories, not the accomplishments.

These are some of the truths.

Posted via email from Stephen Speaks's posterous