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 . . .