The Unthinkable

Since most of the readers of this relatively lame cancer blog are strangers to me, you'd have no reason to know that I married someone who is 12 years older than I am.  We also waited for about 10 years to have a baby together, so I was 34 and he 46 when the whirlwind we call the girly arrived.
She continues to be the light of our lives; the glue that has held us together for at least all of her 16 years.  She is bright and funny, beautiful and caring. And for years, I proclaimed the wisdom of waiting until you're old enough to afford and appreciate them before you bring children into the world.  And because my husband was older, and oh--just happened to have a long family history of lung cancer--I always assumed that in the end it would be her and I, alone against the world.

When my cancer moved from a passing concern to an ever present monster in the room, she clung to the thought that it would be her and her dad--somehow managing to live without me doing everything for them (guilty--aren't all moms, at least of my generation?).

She is now living the nightmare of knowing that not just her momma, but both of her parents are  dealing with a terminal cancer diagnosis. 

You see, the prostate cancer was the least of our worries.  The recurrent anemia and overwhelming fatigue was finally nailed down as being related to a mass in his small intestine that, upon removal and biopsy, was determined to be metastatic lung cancer. A matching mass in the lower lobe of the lung and just for kicks, a coordinating spot already living and growing on the hip bone.

So over the past few weeks, this picture has gone from hazy and grainy to brilliantly clear.
Absolutely crystal fucking clear.  If you know anything about cancer, you know that this level of metastasis rules out surgery, rules out radiation.  Do no pass go, do not collect $100.  Go directly to a chemo chair.  A fate I wouldn't wish on my worst enemy, let alone on my best friend and the salvation that was to be the keeper of my girly when I throw in the towel. Stage 4 lung cancer is not curable, especially if you don't have one of the two gene mutations that can be quickly arrested with an effective new drug, and especially if the "titch" of cancer has already meandered through your bloodstream and taken up residence in far flung locations.

I can't even find the words to explain the devastation.  It's not the knowledge that he will have a tough, ugly fight that in the end most likely won't end like we want it to, nor is it the knowledge that I will either be right before him or right after him.  We're grown adults; we've had a terrific life.  But the heart wrenching knowledge that we're leaving our beautiful girly behind in this world at such a (potentially) young and tender age is so painful that the moment it enters the brain, you push it back down under the surface quickly lest it make you nuts.

I feel like I've won the lottery.  Some rotten lottery no one really wants to win.  Congratulations--your family is the grand prize winner in the Cancer Lottery!  Deal with it!  Tell all your friends!  Get ready for the looks of pity (BOTH of them!), the rude comments (OMG, what is in the water there?), the condescending opinions (Hmm, former smokers, aren't you?) Tired of all that already, so we hide out.  We tell only those people who absolutely need to know.  We continue to live our lives like we always have, ignoring the monster when we can.  For now we can get by with it.  But we know that so many choices, so many decisions, so many actions we really don't want to take, are looming.  Will need to be dealt with.  Sooner or later.

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.

Change in attitude

Since my last post was a real downer, I wanted to share some more upbeat thoughts on this lovely summer day.
Shortly after I whined about feeling alone, my extended family (my wonderful sisters, beautiful nieces, favorite nephew and family, my mom and dad, etc) surprised me by showing up at my door on a holiday weekend--snacks, beverages and lunch in hand. I was so happy to see them all, I quickly forgave them for the lack of warning (they knew I would cook and clean had I known they were coming). Many of them drove 4+ hours one way and back that day; what a gift.

I've made a conscious decision to stop comparing my story to other cancer stories on the distorted world of the internet.  Duh.  What was I thinking?

Many other good things going on around me as well:

• My little great nephew (son of #1 nephew above) came out of chemo for medulloblastoma with a clear scan, after an initial terrifying read.  So happy for them! What a horrible road for a young family.
• My teenager is now legal to drive, and has hit the road. Scary, but less hauling her around for me.  And I'm so grateful for every milestone I get to participate in.  
• The hubby may finally be able to walk again soon, finally! after a long period of healing a broken leg. Looking forward to having him mobile again :)
• My latest scan came back with reduced SUV numbers/activity levels with no spread to other areas.  So even thought I felt like crap and was sure the cancer was all over in my back and stomach, turns out I'm not dying anytime soon.
• Bad news is that current chemo routine continues.  Suck.
• Summer has finally come to the midwest.  The skies are a beautiful shade of blue with a brilliant white fluffy contrast.  It's warm and wonderful after a ridiculously ugly winter. I'm grilling pork chops and eating watermelon and root beer floats. Life is good!

Cheers,
~D.

Gut reaction

Cisplatin and navelbine are kicking my ass--via my guts.
As usual, the body being sick kicks the brain into overdrive.
My head is spinning. I don't know how to carry on my 'normal' life feeling this shitty.
I don't know how to say 'enough already' when I have a little girl begging me to stay.
I don't know how to deal with a spouse having his own medical issues.
I need help, but there is no one is this bucket of crap with me.  I feel alone with no one to turn to.
I read the happy stories of cancer patients surrounded by support and I get angry.  Where is my support?  Why do I have to do this alone? 
Pity, party of one...

Too good to be true

So Avastin was cool...virtually no side effects--none worthy of complaining about anyway.
But alas, my good fortune was not to be. Turns out the patient friendly chemo was allowing the tumors in my liver to grow and venture off into new areas.
Kind of a kick in the teeth.  I had gotten to the point of thinking "hey, I can do this forever..."  and now I'm right back to dreading the whole scene again.  So sick of this.  So sick of cancer. I must go on. Ugh.
Anyone know anything about navelbine?  My next great adventure.

Thankful

After several months of doing the insurance company shuffle: attempting to get approval, being denied, and following multiple levels of appeal, my health insurance company (with a little encouragement from an external medical review board) has finally approved the use of a new chemo drug for me.  Avastin is of a different drug 'family' so to speak; I'll spare you the medical/scientific details because I would no doubt get it wrong anyway.

Suffice to say that I was so looking forward to getting on this drug for several reasons.  First and foremost:  the side effects are virtually non-existent.  No more chest/esophogeal issues, no nausea, no body aches, no rock bottom white blood counts, no shots to boost WBC, no steroids, no more anti- nausea drugs and thus no violent swings from constipation to crapping constantly.  Perhaps I'll even begin to feel my feet again.  Sad to admit that at this point, the little tendril of hope that this drug may actually stop the growth of the cancer is a distant second reason I'm glad to be going down a new path. 

So for now I'll just be thankful that I caught this break.  At least what I perceive to be a break at this point anyway.  Just when I thought I couldn't go on, I have a light in my tunnel again. Thanks, big guy, for looking out for me.

Update, schmupdate

I get the occasional request for "updates", and I'm not sure how to respond. 
I really can't think of a standard answer....where to start?
I could go into detail about how shitty I feel for days after chemo; could talk about the weird pressure in my throat and chest that is begging me to stop the madness. 
I could talk about how this whole pain in the ass routine is going to be with me for the rest of my life, or at least until I throw up the STOP sign.
I could talk about the latest scan results, or the latest battle with the insurance company.

But I really don't want to.  The whole business gives me a bad taste in my mouth. Why would I want to savor it? I don't want to go over it again, because you see, these "updates" are not really news--they are just the new normal of my life. 
I have nothing more interesting to say than the dopey people who post about how best to clean your hardwood floors or make your windows shine.
This cancer crap is just boring, routine stuff that I'd rather not repeat.  Rather not talk about.  Rather not write about. Guess that makes me worthless as a cancer blogger, eh?  Might be time to hang it up entirely since I spend so much time avoiding it.

So instead I answer with all the bluntness I can muster.  There is no update. My disease is terminal.  We all deal with it as needed, when we're forced to. It's just so much easier to avoid it entirely.  I'm too damn busy living day to day to come up with anything profound.