Bob's Memorial Service (additional info . . . )

A quick note: we would like to invite any and all of Bob's friends, colleagues, enemies ;) —whomever — to share a story, a fond memory, a poem, prayer, song, whatever is in your heart, at the service tomorrow . . . don't worry that there's not "enough time" to polish it, make it perfect, or be "just right," don't care at all if you might be scared or mess up, because if you knew Bob at all, you know he'd be the first to say, "Screw that! Just say what you gotta say!" We'd love to hear the wide and varied stories, memories, snippets from other's experiences and perspectives . . .

We'll announce during the service, when the time comes, for "story time . . . "

Celebration of Life service for Bob Andrzejek

Please join us in Celebrating the Beautiful Life of Bob Andrzejek, to be held this Friday at the Dakota Lodge in West St. Paul (see details below). I know it's such short notice, but we're trying to work with visiting families' schedules and Mother's Day weekend, and quite frankly, if Bob had had his way, the service wouldn't be happening at all. He never liked being the center of attention or being fussed over, so I'm also trying to be respectful of his wishes and not make a huge deal out of it (though in my book, he is a huge deal . . .).

I extend an invitation to anyone who knew Bob, to share a fond memory or two about him at the event . . . and in lieu of flowers, please consider a donation to the U of M Raptor Center, in Bob's honor, or to the Ronald McDonald House . . . or, perhaps simply use the money to do something you'd really like to do—go out to dinner, buy a new spring outfit, take a little weekend get-away, head to Valley Fair . . . in other words, use it to enjoy and embrace life, the way Bob did, and the way he would want you to . . .

A Celebration of Life, in honor of Bob Andrzejek

Friday, May 6 at 3 p.m.

at the Dakota Lodge in Thompson Park

1200 Stassen Lane, West St. Paul 55118

Driving Directions
(Driving directions for the park and Dakota Lodge are the same)

From North

• I-94 to State Hwy 52
• State Hwy 52 south to Butler Avenue exit in West St Paul, Minnesota
• West on Butler Avenue East 0.2 miles to Stassen Lane
• South on Stassen Lane

From South

• I-494 to State Hwy 52
• State Hwy 52 north to Butler Avenue exit in West St Paul, Minnesota
• West on Butler Avenue East 0.2 miles to Stassen Lane
• South on Stassen Lane

December 27, 1966 - May 3, 2011 . . .

Bob passed away at home this evening, around 6 pm. Sun was shining, glowing through the barely-there baby leaves on the trees in the backyard. The kind of afternoon that would have prompted him to sling his camera bag over his shoulder and head off to Afton or William O'Brien for a few hours alone . . . his dad was by his side when he took his last breath. I believe he planned it that way. . .

love to all.

Longest Days . . .

I have finally run out of words, so I'm going to let the venerable everymanandwoman's poet, Mr. John Mellencamp, speak for me tonight. . .

Longest Days

Seems like once upon a time ago

I was where I was supposed to be

my vision was true and my heart was too

There was no end to what I could dream

I walked like a hero into the setting sun

Everyone called out my name

Death to me was just a mystery

I was too busy raising up Cain

But nothing lasts forever

Your best efforts don't always pay

Sometimes you get sick and you don't get better

Life is short, even in its longest days

So you pretend not to notice

That everything has changed

Way that you look and the friends you once had

So you keep on acting the same

Deep down in your soul

You know you, you got no flame

And who knows then, which way to go

Life is short, even in its longest days

All I got here is a rear view mirror

Reflections of where I've been

So you tell yourself I'll be back up on top some day

But you know there's nothing waiting for you up there anyway

Nothing lasts forever

And your best efforts don't always pay

Sometimes you get sick and you don't get better

That's when life is short, even in its longest days

Life is short, even in its longest days

We are having some long days out here at Wrenwood . . . long, sad days. . . the courageous, humbling, awe-inspiring fight is nearing the end and I don't know if I'll ever stop crying. The suffering has gone on far too long, but I still can't help feeling cheated, oh so cheated . . . please pray that Bob goes peacefully, let him know, in any way you know how, that he doesn't have to fight any longer, tell him that his spirit will enveloped and held tight, with all the love in the world . . .

Happy Easter from Wrenwood . . .

Happy Easter, from the Andrzejek/Hildebrandt clan! What a gorgeous, sunny day for a holiday gathering—we have connections, see, and were able have this sun-shiny April day special-delivered—huge shout-out to Sam and his peeps! xxoo . . .

A beautiful/tough day it was, Sunday . . . beautiful in that we were tightly enveloped in the huge snuggly blanket of love from our immediate families, almost all of whom were in attendance (all except our two oldest nieces, whom we missed immensely, but were with us in spirit, I know. . .), as seen by the awesome pic here . . . and of course, in spirit from the rest of you, too . . . back atcha . . .

Bob has dropped another few "rungs" on the hospice ladder. . . over the past several days, I can't say how long for sure, the past few weeks are smeared into an endless blur, can't keep them straight any more, as if I've ever been able to . . . he's been steeped in deep, almost unresponsive sleep, punctuated by short bouts of waking—sometimes alert and lucid, but more often, confused and somewhat agitated, hallucinating at times . . . he hasn't eaten anything substantial in several days, maybe over a week—again, can't say for sure, though he did manage to muster up enough "appetite" to have a piece of his mom's Mexican lasagna the night Nancy and Co. came to town (last Thursday, I think it was. Must be Mom's home cookin' that did it . . . ) but that's been about it, for days on end . . .

All my secret begging and bartering, pleading and crying hasn't worked, not that I really expected it to, I know now that's not how life works . . . in my head, I know it, but the heart is nothing if not hopeful, desperate some may say . . . I'm pretty sure most everyone in a similar situation resorts to such tactics along the way, falls upon any number of things, really, to try and hold tight to what fragile threads remain . . . I barely leave Bob's side, haven't left the house in days, not even to walk the dogs, barely to shower . . . I don't want him to be alone, if anything should happen. . . Hospice doc and nurse say it could be a few days, maybe a few weeks, hard to pinpoint for sure. . . hence the reason for not replenishing the Etsy site, among other things . . .

I almost called off Easter (well okay, not the official holiday itself, omnipotent though I may be—in my head—just our own plans), as the night before, Saturday night, was especially alarming . . . I don't have the energy or ability to explain, believe that it just was—enough so, that I called the hospice on-call nurse Sunday a.m., crying for guidance, what if something happens when everyone is here—what if something happens before then?! Tell me, what's the "hospice protocol" again? Who do I call first?. . .

Collette (the week-end on-call nurse and I are on a first-name basis now, though we've never met, as I've called numerous times in the past months, usually at 2, 3 in the a.m., and she often seems to be the one on-call at those times) gently assured me that everyone reacts differently, that I'm doing a great job, to follow my heart. Some would rather not have a lot of people and commotion around, she tells me, others are okay with it . . . I want—no make that need—family around, and despite his acute lethargy, I truly felt Bob did, too and decided the best thing would be to keep the plans, let everyone know what's going on, so no one is taken off guard . . .

I was able to get Bob back to the bedroom on Sunday morning, tucked into our bed with the heated blanket on low, so nice and cozy . . . he had a quiet space to rest and we would let family members, one or two at a time, come in and visit with him for short periods . . . "business as usual. . ."

It ended up being a painfully beautiful day, in a million and one ways . . . beautiful in that both our families were able to be with us, beautiful weather, beautiful brunch with everyone contributing to the bountiful goodness, beautiful waves of love washing over the entire day, beautiful artwork from Claire, Grace, Amelia, adorning the fridge, beautiful sounds of kids (some of the adult variety . . .) laughing, shouting, running through the house, outside in the yard, out on the deck, beautiful various conversations entwining and drifting through the house, as though this holiday were no different from any other. . . .

Bob was pretty much out of it most of the day, sleeping a lot in the bedroom. He was visited by whomever wished to pop in and say "hi," to sit by his bedside for a few minutes; he sometimes woke up enough to say "hi" back and even chatted a bit . . . Occasionally, he'd wake up and asked to go out to the living room, so we'd help him slowly make his way out to the recliner to sit for a while, but spent more time in bed. Rocco was a complete and utter surprise. I thought for sure he'd be in the midst of the chaos—chasing kids, barking, stealing chocolate bunnies from baskets, loving every minute of it. But, either he was totally freaked out by the sheer number of people who had invaded the joint, or he could sense something was up with Bob . . . though Bob calls Rocco "my" dog, says his name should have been Elmer, the way he sticks like glue to my side, on Sunday, Rocco was Bob's dog, spent nearly the whole day in the bedroom with him, followed him to the bathroom, outside, back inside, rarely leaving Bob for any length of time all day. You can barely see him right next to Bob, in the family picture above . . .

At one point, I asked Bob if he'd like to go out to the deck and sit in the sunshine for a while because it was so nice outside. At first, he resisted (I think he thought it would be too much effort on his part, being so groggy and weak), then Nancy suggested bringing his wheelchair right into the bedroom so we could help Bob into it, and then carry him, chair and all, out to the deck, since we had so many willing and able bodies to help. A little aside: we have this groovy 70's rambler, with a sunken living room and sunken bedroom—absolutely, utterly un-handicap accessible, though Bob, amazingly, has thus far been able to maneuver the few steps, with a very clever "system" he worked out, months ago, using his walker and the railing as supports. Kind of unnerving to watch, to the untrained observer, though these days, I'm always at his side when he does this . . .

Shortly after Nancy's suggestion, Bob's wheelchair appeared in the bedroom, along with 4-5 strapping young lads, his dad included . . . Bob climbed into the chair and was hoisted up the three steps, wheeled down the hall, lowered down another three steps, then rolled out onto the deck. Immediately, he turned his face up toward the shining sun and closed his eyes . . . he was able to get outside a few times throughout the day in that manner, and each time, though he didn't talk much, he simply drank up the sun, the breeze, the voices, the sights and smells, chirps of birds singing around us. . .

Jim wheeled Bob up to the end of the driveway and they went for a little walk down the road a bit, then back. I fought the urge to join them, and just watched them from my perch on the front steps. I could tell they were talking as they rolled. . . they stopped to watch the ?th Annual Raw Egg Toss playing out in the road in front of our house (little FYI: Bob and I held the most recent Reigning Champs title, having won not one but BOTH rounds last time the Toss was held, back in '09 {'10 didn't happen as Easter was around the time Bob had his first chemo-induced heart attack} Our record hasn't been beat; needless to say, but I will: Kurt and Katie won this year, only because the competition was pretty lame) . . . we pointed out to Bob the colorful evidence of the Annual Silly String wars sprayed all over the lawn, bushes, sidewalk, driveway (another explanation is in order: Bob and I have hosted Easter as long as we've been home-owners—15 years or so, maybe?—and started these goofy traditions back when we lived in Roseville, much to the annoyance of our neighbors and city clean-up crews, I'm sure . . .) before wheeling him back to the deck again. . .

Eventually, Bob needed to go back inside to lie down, but was still receptive to whomever wished to pop in and say "hi . . ." sometimes, he'd actually sit up at the edge of the bed, to talk a bit, stretch, change positions. It was during one of these times, I went in and sat by him, to see how things were going. He turned to me, put one arm around my shoulders and held my face in his hand and gently kissed me, over and over. "You're so beautiful," he kept saying. "I love you . . . thank you . . ." I can't even begin say how much this means to me, for a million and one reasons, some obvious, some not as much . . . I held him as tightly as I could, sitting side-by-side at the edge of the bed, the walker between us for support . . . later that night, I told him it was my absolute favorite part of the day, and in true Bob fashion, he asked, "That was? Why?" Sentimentality has never been one of his strong points . . .

Shortly after, the families departed, one by one till just Nancy and Co., and Jim and Penny were left . . . funny how quiet it is, when my family leaves . . . Bob slept for a good hour, maybe more and eventually woke up and wanted to come out to the living room to sit. When he joined us, it was as if our "Old Bob" was back . . . for a good hour and a half maybe, he was alert, conversational, joking and laughing with us, everything that he said made sense, chatting away like old times. . . eventually, Nancy, Brian and the girls had to leave to catch their flight back to Billings, and Penny and Jim left at the same time. "Old Bob" stayed with me for a while longer, and we talked about everything and nothing, until it was time to take his nightly meds. Lately, he's been so resistant to taking them, insisting he had already and I have to gently but firmly convince him that he hadn't and then give each pill to him, one by one. Sunday night, however, he sat up at the edge of the recliner, counted out his pills, tossed back a shot of each of his liquid meds and gave himself his Lovenox shot. Then, "Old Bob" left me. Almost immediately, he mentally and physically dropped back into the lethargy and confusion that's taken over his mind and body.

Now, for the past few days, it's been quiet, oh-so-quiet. Bob is sleeping all day and most of the night, very weak, not especially responsive . . . though, funny thing is, he still likes getting his shower in and I just wait till he says the word, till he's ready and able to get up and make his way to the bathroom . . . the hardest part is the confusion, and the agitation and anger that comes with the confusion . . . I keep replaying those moments on the edge of the bed, over and over in my mind, trying to burn them forever. . . reminding myself that that was my Bob, if only for a few short moments . . . this confused, angry Bob is a disease taking over . . .

I'm so sorry that this is so long and dragged out . . . if I don't write these things down, I forget everything, under the immense weight of it all, it all fades from me . . . much is probably disjointed and likely doesn't make much sense to most of you, but it helps me to remember other things that I don't write about, sometimes intentionally, sometimes just because it gets to be too much . . . and this past Sunday is one day I simply do not want to forget . . .

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. . .)

Fuck cancer. Have I said that before . . . if so, let me reiterate. FUCK cancer.

I know I've been so sporadic in updating the blog in the past months and I apologize for that . . . after all, the whole intention of this blog, which goes back to ancient times, a year and a half ago, was to have one "go to place" to keep family and friends up to date and informed on Bob's situation . . . but man, on this leg of the journey, it's sofa king hard . . .

But, when it rains, it pours . . . so I'm just warnin' y'all here that this blog entry might be a whole lotta ramblin' goin' on, a deluge of diarrhea of the mouth, maybe a little bit o' venting, a lot of "sharing," a lot of getting shit out before I implode, maybe PMS, though highly unlikely, as I just got off the rag (just thought I'd throw that bit o' TMI in, just for fun) . . . then again, maybe I'll just reel it all in, hit "delete" as I have too many times lately, and just keep it to the bare minimum, because it's a helluva lot easier, less confusing, less rambling, less everything . . .

Since Bob's been home from the U, our whole perspective, our entire being, has shifted, changed direction and definition, which makes it difficult to regularly post, has added a whole new dimension that I still can't embrace, just don't get, will probably never understand. . . there's nothing beautiful, precious or infinitely special about caring for my beloved 44 year old husband in hospice care, when he's been dragged through hell endless times, fought so fucking hard, when there is so much of his life is left undone, when each and every day is spent watching him get through it, with humbling, courageous strength, in spite of excruciating, debilitating pain and endless other issues . . .without ever bitching or moaning . . . struggling to find that balance between "pain management" and "zombieland . . . " and we're told, this is how it ends . . .

This is the hardest job I've ever done, and I mean ever, but it's the best job I've ever had, and I mean ever, a job I'd never give up. Ever, ever, ever. Hospice nurse keeps telling me there are CNA's who can come out and help Bob with showers, meals, whatever, to give me a break, give me "respite" from my caregiver duties. I look at her like she's nuts. Seriously. Would a CNA know how to give Bob a shower the way I know he likes it (or let Rocco in on the action)? Would a CNA know how to change his dressing and give him a little relaxing back massage afterward, like I do every time? Would a CNA kiss his feet every time he/she would wrap his legs or put his compression stockings on, or apologize profusely for causing any additional pain while wrapping his leg or wrestling to get the stockings on? I think not . . . thanks, but no thanks . . . I mean, c'mon . . . who's gonna come in and give Bob a respite from the shit he deals with all day, every day . . . answer: no one.

It's so hard, so very hard, to try to define, to write about, put into words the simple, yet complicated world we're living in these days. Simple in our daily activities, yet insanely complicated, those same activities . . . the endless waves of emotions that pummel us throughout the day and the multifarious nature of those waves . . . the sticky, messy, intricate tangle of thoughts and actions we wade through, all day, every day . . . and me, being able to speak only selfishly, self-centeredly here (yes, I think I just made that word up, self-centeredly), of myself and what I'm thinking and feeling, because I would never be so bold, assumptive (ummmm. . . is that another made-up word?), so arrogant, to speak for Bob, and so heartbroken that he can't jump this blog and take over for a while, to speak for himself . . . .

I try to share what life is like here at Wrenwood, but end up exasperated, in my attempts and usually end up deleting pretty much everything I spewed forth originally and simply resort to the daily mundane . . . sanitizing, sugar-coating, with a cheerleader's touch, which is a helluva lot easier than trying to delve into the deeper issues at hand . . . but even reporting on the mundane is misleading, at best. For instance, to say Bob's having a "good" day is really an insult to all he deals with on a constant basis, without reprieve. Because the reality is that he has mostly incredibly shitty days, but once in a while, has a day where the shit might be infinitesimally less shitty . . . he never complains, I simply observe and try my hardest to translate, sanitize . . .

Even though things have stabilized, every day is tough for Bob, has been for the past year and a half, and maybe it's time to lay it out on the line . . . maybe because this has become our life for the past 18 months and it has become "normal" and "acceptable" to us, I just assume others read the blog in detail, read between the lines, hear it through the grapevine, whatever . . . it didn't occur to me to be even more blatantly honest and detailed about all Bob has to face, each and every day . . . I'm shocked when people are surprised that he's not up for a visit or doesn't return phone calls or e-mails . . .

Maybe it's because I've spent endless hours recently, perusing Bob's vast collection of photos in the past several weeks, which have been a bittersweet journey, mixed well with harsh reminders, evidence of how amazingly vibrant, strong and full of life Bob was just a mere eternity, year and a half ago . . . maybe it's because of a few e-mails and phone calls I've recently received from friends and family, that brought to my attention that perhaps I haven't been clear enough in relaying just how sick Bob is, that there is so much he simply cannot, will not ever be able to do any more . . . maybe it was so many people saw Bob at the benefit, saw him looking so good, so engaging, so gregarious . . . maybe it's just all the thinking I do on the long walks with the dogs that gets stirred up, boils on the surface and needs an outlet, now . . .

To be going through Bob's vast photo collection lately as I have, is dredging up a lifetime long gone, a renewal of reminders of such a beautiful life that has been so cruelly, violently, endlessly altered, 18 months and counting . . . to watch someone I love suffer so intensely, without one day's reprieve, is some days, more than I can bear. I push past my own feelings of horror, fear and immense sadness—get over myself—and try to help Bob, be here for him, as best I can. I find myself stopping mid-sentence when I start to complain about girlie cramps or waking up with a stiff neck, or a mild sore throat, because the instant the words leave my mouth, I realize who I'm talking to, and that's enough for me to shut my f'n pie hole. . . take your cramps, your migraines, your bum hip, your run-of-the-mill cold or flu, your everyday aches and pains, multiply by infinity and wrap yourself up tight in that for over 500 days, without end in sight, and you might get an idea of what Bob's life has been like since October, 2009 . . .

Some good friends invited us on a camping trip at the end of April. Was so thoughtful, to include us in their world—Bob's old world of camping, hiking, kayaking—for the weekend, even taking great care to tell me how they could accommodate Bob, that the campsite is wheelchair accessible. . . . another friend just asked us when we were going to visit them in Tennessee. Remember, if you all will, so many months ago, when we were all talking about renting a Greyhound bus and heading down to Memphis for some real BBQ, once all this shit was done and behind us . . . "what would it take to get you guys down here?" our Tennessee friend asked me. Wow, how do I even begin to answer that . . .

Pain is a constant companion, always just around the corner. Moving around is so difficult for Bob—using a walker around the house is the only way he can get around, and even then, it's slow, painstakingly slow, can only get around a few feet, really, with a walker, not much more . . . he needs my assistance with all his personal cares—showering, bathroom duties, getting dressed, in and out of bed. . . he can't just get up and go to the kitchen and make himself a sandwich if the mood strikes (which is not much, these days). He does, at times, get up and slowly make his way to the kitchen to fish out a popsicle from the freezer, but that's about the extent of his independence.

He has an open wound on his back, with a huge, ugly tumor protruding from it. I see it every day, twice a day, when we do his dressing changes . . I've been watching it changing, growing since his Bethesda days. . . both lower limbs are edemic (again, a made-up word? so full of it, lately . . . and I mean it . . .), swollen to over twice their normal size with fluid, maybe adding a good 25-30 extra pounds of weight to Bob's feather-weight frame. . . heavy and cumbersome, taking all of his strength to lift onto the bed, or up the three steps to the bedroom, I get so mad when he tries to get into bed on his own, which he does, often . . . stubborn Polack (ummmm, I'm so bad at stereotyping, I don't even know if Polacks are stubborn. Just sounds good. Maybe we've been watching too many All in the Family reruns . . . )

All this and more, has been our "norm" for over three months . . . almost daily, I vacillate between bartering with God or whomever is responsible for our being, that I would live like this forever, taking care of Bob like this, doing all this and more, if only he wouldn't be taken from me. . . then, when I see how hard everything is for him, how much pain he's in, even with copious amounts of narcotics, how little quality of life he has, I know my little plea is so selfish in nature. . . last night, Bob said to me, once again, "I can't do this any more, Jen . . . "

So, we've sold four sets of cards through our Etsy shop already, only our first week in business! How cool is that?!? A sudden change in topic, it seems, but there is a connection, if you choose to continue to follow me . . . so, my initial intention was this very lofty aspiration to use the proceeds of our store to help fund efforts to educate the public as well as the medical community about the late effects of childhood cancer treatments. . . that was my intention several months ago, when we first started kicking this idea around. . . as time has gone on and as I've thought long and hard about that commendable ideal, our experience (which includes countless encounters and conversations with doctors upon doctors along the way) along this journey in life has more and more convinced me that the "war on cancer" is a farce. . . preventive medicine is a joke . . . cancer is too profitable for anyone/any institution in the medical community to really be serious about finding a "cure. . ."

We've been told, by several doctors on this long, living nightmare, that treatments for Hodgkin's back in 1970 (when Bob was treated for his first cancer) haven't changed much today. Which means that the long-term effects that Bob is dealing with now are a stark, very real possibility for newly diagnosed Hodgkin's patients. We met with the "Long Term Follow Up" clinic at the U several weeks ago, and were told by their "cancer survivor" specialty doctors, the same thing. . . I attended a "Cancer Survivorship" conference at the U last spring, with Penny and my mom, and sat in near horror, listening to doctors and researchers and scientists tell the audience that, when long term followup studies were started on cancer survivors, back in the 70s, they started seeing adverse effects of cancer treatments almost immediately . . . Not years later, but a few short years after treatment. . .

Look up Hodgkin's survivors on the internet. . . you'll find endless chat rooms, message boards, websites, personal stories, devoted to late-effects survivors are dealing with. And not random anomalies. No, these are countless, endless stories. . . curing cancer, my ass . . .

Last year, Bob's insurance company ponied up over two million dollars in payments to the U for his cancer "treatments." Chemo, endless hospital stays, endless ER trips, literally months spent in hospital rooms at the U, enduring a horrific, disfiguring, debilitating 13 hour "curative" surgery. A "curative" surgery that resulted in nothing but horrifically disfiguring and disabling my husband and allowing the cancer to return—growing in front of my eyes as Bob "rehabbed" at Bethesda, just a few short weeks after the "curative" surgery—after we were told that all margins of removed bone had tested "cancer free." Fuck cancer. Fuck treatments, fuck the entire medical community and their for-profit, anti-preventive focus. . .

So where does that leave us? Where does that put my lofty aspirations of sharing Bob's photography with the world and saving it, in the process? I'm thinking I need to change my focus, bring it closer to home, closer to my heart, to our experience, to our world, to honor all of you who have been so near and dear (even when you haven't been able to physically be near us) . . . one of the things that I've been most grateful for, in the midst of this neverending nightmare, is that, when the time came to be, I was able to quit my job and become Bob's full-time caretaker. For better or worse, personified. . . sure, we were able to do it for a long time on our own scrimping and savings, but there came a time, when the shit hit the fan, when push came to shove, when we realized this battle was wasn't going to end when I said it should end, our friends, family, strangers stretched out the net and caught us, carried us . . .

So, the latest incarnation of my lofty aspiration to try to make some sense, some purpose, some meaning behind this Krazy Karival Ryde is to maybe use the proceeds of the photography sales to start a caregiver's fund. . . to help a family in need . . . to maybe help others organize a kick-ass benefit event, to provide financial guidance, budget advice . . . or, maybe fuck it all to hell . . maybe, just maybe, we'll just take the money and head to a remote island in the Pacific . . .