Unwell

I have been amazingly fortunate.  Over the past almost 24 years dealing with my cancer, I've experienced only a minimal impact on my overall quality of life.  And while there are many adjustments I've had to make along the way, I'd say that a majority of the time it's difficult for most people to tell that I'm even ill.  I'm a little spoiled that way, in that I've come to expect that cancer will not affect me until the time comes that it's ready to actually take me.  So all the little aches, pains and injuries I've been experiencing in the past 3 or so months (the balky knee, the arthritic hips, the tweaked back muscle, the shoulder sprain, the pulled groin muscle) I have chalked up to aging or being a bit out of shape or medication side effects.  A little Tylenol, a few heating pad sessions, an ice pack or two and I'll be good to go again.

Except...that is not true.  A very frank discussion with my onc this past Monday has forced me to finally confront what should have been obvious knowing what I know about my disease and most recent scan results but which I chose to ignore in vain hopes of it not being real.  I am unwell.  My disease has progressed to a point where quality of life is indeed affected and will continue to be affected into the future, no matter what treatments and remedies are undertaken.  All those little aches and pains are a direct result of the many tumors in my bones and they will not go away because the tumors will not go away.

I am in pain daily.  It hurts to walk and I cannot run.  I am losing weight (despite regular infusions of Chicken McNuggets) and muscle mass.  It hurts to lift anything more than a few pounds.  It is difficult to get a comfortable position sleeping and I wake frequently (reminding myself to "Move slowly!" as I shift from side to side).  I am losing the energy I've always been so grateful to have - I sleep more, nap more, stay sedentary more.  I am in pain daily.

When my onc began the discussion this past visit on the necessity of proper pain management is, I think, when the veil of denial was finally ripped off my eyes (hey - at least he didn't give me the old "it's time to get your affairs in order" speech!").  Moving towards pain management - it MEANS something.  I may not yet be terminal, but I AM progressing in that direction, and now I feel it.  I feel it in my body and I feel it in my head and I feel it in my heart.  How incredibly sad that makes me.  I'm the hero, I'm the inspiration, I'm the fighter, I'm the badass saint, I'm Wonder Woman dammit!!  This can't be my next chapter.  I weep for me.

And so...I wallow a bit with this newfound epiphany, that I am unwell.  I get angry. I cry.  I process.  I walk the dog, painfully but with the joy of breathing in fresh, clean air.  I talk to some of my squad (Lisa, Jodi, Kathy - you guys always bring me out of my own head. I love you for that).  I bargain with God.  Again.  I meditate.  I worry - about my children, about my ability to work, about what the future holds.  I breathe and I breathe and I breathe some more.

And then I do what I do best.  I make a plan.  I'll meet with another jaw surgeon to figure out the next step there (yep, still got that hole in my face).  I'll have a port put in so I can move on to more aggressive chemotherapy in hopes of holding back the devil inside just a little longer.  I'm told the drug we're going to use is very tolerable (e.g. no hair loss or nausea) if infused weekly and we may do a "2 weeks on, 1 week off" protocol to preserve that oh-so-meaningful quality of life.  And we're upping my game with respect to pain management with a stronger drug and more frequent usage.  I will have to make more adjustments in my life but hey, I've been doing that for 24 years and while I am oh-so-tired the fact is...there's no other option here.  Never, never give up.

That goes for any of you who are also unwell.  I'm thinking of you Bud, Mike, cousin Sammy, Lena, Catherine, even little Leanne who toughed out a tonsillectomy recently. Keep on keeping on all of you - it's hard, I know, but worth the fight.

I just returned from a great trip to Phoenix that included a road trip to California with my "ride or die" Lisa - there's no one I'd rather sing Led Zeppelin at the top of my lungs with than you!  Many thanks to our patron "Dan the Man" for his wonderful hospitality.  Family time with Mike, Nik, Robin and Jarrod in CA made the whole adventure quite joyful (although let me assure you it DOES rain in Southern California).  Next up - Norway!  In 2 weeks, Taryn and I will join Mary and Cecelia on a little mothers-daughters quest to beautiful fjords and quaint Scandinavian villages.  Maybe this time we get to see the Northern Lights??

Blessings and Love to All.