Live like you are dying?

I've been saving this rant er, blog topic in my head for some time now.  Certainly not a new song/phrase, but I really hate it.  What the hell does that mean anyway?  How would you live differently if you knew you were dying? 

• Quit your job?  Not if you need the health insurance.
• Travel the world?  Not if it's completely unaffordable, and not if you have a family to take care of.
• Create a meaningful bucket list and cross things off, one by one?  Not if you really don't have time in between going to work, going to treatment, scans and other medical appointments, hauling kids to activities, and/or supporting those you love in other ways.  In the real world, there is no time for bucket lists.
• Appreciate those around you more than you ever thought possible?  Savor every moment with loved ones?  Yes, yes indeed you can do that.  Even when it's difficult because you feel like shit and even when people let you down?  Yes, you need to do that.

The vague, lofty idea of living differently because you're dying annoys me.  It assumes that those of us who are aware that death is the inevitable end of our somewhat crappy journey have some kind of super human insight into what makes life meaningful and how to do it better than everyone around us.

The reality of living with a terminal disease is that many times when you're doing something fun and/or something out of the ordinary, you wonder if this is the last time you'll ever do it, the last time you'll ever be there, the last time you'll ever see these people, etc. So even when you're living in the moment, your mind is dragging you into the future. The hazy, unknown future.

The reality of living with a terminal disease is that you spend time pondering all the things the future will bring that you know you will most likely miss out on.  Life fulfilling moments and experiences that you won't share with your kids.  Senior proms, moving into the dorms, wedding dress shopping, new grandbabies.  All of these haunt me and make my heart hurt for my daughter because her mom won't be by her side.

This Labor Day weekend has for about seven years now meant a party at our house--including friends, family, food, cocktails, music and fun.  It's not happening this year because I didn't have the energy.  I'm not living like I'm dying.  I'm missing the people I would have seen and the fun I would have had and I'm angry that cancer has taken that away from me. 

And the beat goes on...

We're now into August; summer is flying by. Since I have connected with a few people here, and am still hopeful that I'm providing some help to someone somewhere by sharing this story, I feel somewhat obligated to continue posting--even if sporadically.  Most days I'm so sick and tired of dealing with cancer...thinking about it, reading about it, living with it, that I'd prefer to do something mindless as opposed to blogging about my cancer experience. 

As positive as I've tried to be here, the truth is my reality kinda sucks.  Chemo for life is a grim road; I'm not gonna lie.  Truth is I've felt like shit for about 5 months now.  After months of complaining about chest pressure, abdominal pain, and telling docs and nurses that the current chemo combo (Cisplatin and Navelbine) is killing me, I got sent to a gastro doc who found a hiatel hernia and
H Pylori. So perhaps I'm not going to have a heart attack anytime soon, and perhaps the current antibiotics to kill the stomach bacteria will make me feel better once I get over having to crap about 12 times a day. Maybe there is light at the end of this incredibly long tunnel after all.

In other news, I'm trying to get into a clinical trial at the NCI in Bethesda, MD. It's an incredibly slow process and will likely be pretty unpleasant, but I know that immunotherapy is the future of effective treatment, so seems like the right thing to do.  Still in limbo at this point.

The last bit of suckiness here is that my husband has been diagnosed with prostate cancer.  His urologist insists that it's completely treatable, and that it's a very slow growing cancer.  Still trying to process it.  I'm strangely immune to the news, and my focus is on providing some semblance of strength and security for my daughter going forward.

So if I ever have the time and energy to actually do some deep and contemplative writing, I have plenty of fodder for blogging.