Thank you Easter Bunny! Bawk! Bawk!

(I hope this YouTube commercial shows up . . . a classic!)

First and most important item on the agenda: Bob. Things are still holding steady with him, though a few issues continue to be on-going challenges and are really testing our resources (and his patience) . . . pain management is an elusive goal, likely because the tumor is growing, perhaps pressing on nerves and organs, causing new pain and discomfort in new areas. Bob would still rather be more coherent and lucid, and deal with the intermittent pain with his current medication regiment, rather than be drugged up, incoherent and "pain-free," so for now, he's hanging tough. Appetite has diminished considerably, which is somewhat concerning for me, but isn't for him (he does drink a lot of his calories/nutrients right now, so he is getting some nutrition/hydration . . .) Though again, in hospice, it's a whole new ballgame, all new rules . . . with the various stages one goes through, this may be part of the process. . .

We are so looking forward to the holiday weekend fast approaching—Bob's sister, Nancy, and her family fly in tomorrow morning, and will be staying till Sunday night. It's been a whole year year since Bob's seen Nancy's husband, Brian, and Claire and Grace, our Montana nieces. Wow, an entire year—blows my hair back, thinking about how the time has gone. . . My entire family is around for the holiday (this happens only once every 283 years, peeps), so they will all be coming up on Sunday, for brunch, an Easter egg hunt, raw egg toss (and some yard work here at Wrenwood, too, but they don't know that, yet. . . well, now they do, hehehe. . .) Easter, traditionally, was always our holiday to host and it's been a long time since we've done anything with the entire family present (okay, now that I'm doing a mental head-count, I figured out our two oldest nieces will be absent and sooo missed . . .) so this will be an incredibly special weekend. . .

Changing gears a bit here . . . I've been told a few times along this Krazy Karnival Ryde that I should write a book on Bob's ordeal, on our experiences, based on this blog and after thinking about this for quite a while, I've decided one book just won't cut it. It'll have to be a series, covering several topics and thanks to a recent event, I already have a concept and the title of the first volume in mind. It's gonna be called: Shut Your #$%&ing Pie Hole! (subtitle: What never to say to a cancer patient's caregiver/family/loved one—a guide for the clueless) The runner-up title is, What the Hell is Wrong with You? No, Seriously.

Plenty has been written about what not to say to a cancer patient/survivor, as seen here, and here and one of my personal favorites (for 41 obvious and not so obvious reasons), here. Despite the miracle of the internet and all these helpful resources at our fingertips, it's mind-bogglingly astounding that knuckleheads still abound and continue to say such things, especially—and I say with relative certainly—that most of us know someone near and dear who has had cancer, is currently battling cancer or has passed away from the horrific disease. However, not much has been written about what not to say to the caregivers of cancer (or other) patients, interestingly enough . . .

The first chapter of, SYFPH! will address the topic of religion/spirituality, as it's a topic near and dear to my heart. It's so intensely personal, so uniquely individual (is that redundant. . . yup, pretty sure it is. . .) and is no body's business but one's own, which is why I rarely discuss my own beliefs in detail on this blog. Oh sure, I might rant "a bit," but what I really, truly believe is never a topic of this blog, much less, is Bob's (because he's been unable to really be an active participant of this blog, and I'd never be so arrogant or presumptuous to try to speak for him). I'd be editing and updating this damn blog every other hour if I tried, as my beliefs have been challenged and violently shaken to the core, and change with the minutes on the clock. . . and I'm sure my God is okay with this.

Few things have pissed me off more, in the past year and a half, than the "well meaning" few who have felt the need to shove their own religious beliefs in my face (note I say "religious" and not "spiritual;" huge difference, in my world). And yes, it's happened once again, hence the need to address this, once again. If someone is so arrogant and insensitive as to throw this shit my way, I will throw it right back. Hell hath no fury like a redhead scorned . . .

I knew from the inception of this blog, back in October of 2009, that sharing Bob's journey and my experiences/observations/insights/rants/raves/soul bearing along the way, out on the big, wide web has its pluses and minuses. Main one being that putting myself out there as I have, I'll be subjected to those who comment on my blog entries, some of whom may try to tell me how to think, feel, believe in the midst of this insanely chaotic year and a half we've lived. Most people have been nothing but awesome bursts of love in our world, endless sources of support, encouragement, respectful and sensitive words, an endless stream of positive vibes, from friends, family, even complete strangers. . .

Spirituality is a complex entity, infinite layers deep and wide, ever-changing, ever-challenged . . . take any church, for example, and you'll find as many unique belief systems as there are members of the congregation. It's not a one-size-fits-all concept, yet there are people who actually subscribe to this tunnel-vision belief and are hell-bent on trying to drive this "point" right through my heart. It's like an affliction they just can't shake, as though my words are a personal attack on them, failing to get that this is nothing more than my humble humanly response to a horrible event at hand, not directed at any one person, thing, entity . . . these few completely, utterly miss the whole point of what this journey has been like for Bob and me, what it means to us personally . . . again, please let me reiterate: most of you get this. . .

As I pondered this interesting, yet highly irritating, offensive, insulting and incredibly insensitive and self-righteous phenomenon (and once again I reiterate—wait, have I said that already? If so, allow me to reiterate—99% of our supporters have not engaged in this practice; if someone disagrees with anything I've written about, most have the sense and respect to not say anything at all. It's that pesky 1% who gnaw like a chigger at me, causing a rash to spread throughout my body, my mind and my soul . . .).

I tried to find articles that supported my reaction and feelings, as a caregiver hit with these hurtful, insensitive blows. As if caregivers don't have enough to worry about in our days, without the added stress of deflecting the heartless comments and actions of "well-meaning" others . . . Unfortunately, surprisingly, I was hard pressed to find anything written about what not to say to caregivers/loved one/family member of a terminally ill person. My theory on that is that caregivers are already doing everything in their power to keep their heads above water, giving all they have in every sense of the word all, focusing all their strength, energy, love on the one they have chosen to care for . . . and when their job is finally over (and for many, this might be years, even decades), they're spent and have little left to give, to explain, to defend . . . or, maybe by then, they realize it's futile, pointless, a waste of time, because life lessons are ours to learn alone, not for someone else to tell us. . .

After a good while of searching, I finally dug up this gem. I almost overlooked it because it was buried in a website that focused on issues of people 50+. Though the title of the article is "What not to say to the sick and dying," the author astutely, profoundly addresses the endless, hurtful things "well meaning" people say in times of grief or other life crises.

I hope you all take a few minutes to read what this woman has to say. It's kind, thought-provoking, sensitive and has absolutely no f-bombs anywhere, an amazing feat, in and of itself. . . a very Hoppy Easter to all! (thanks, Julie, for this incredibly disturbing image . . . it's an Easter cake, peeps. . .)