Winnie the Poo, and great horned owl, too . . .

You can't stay in your corner of the forest, waiting for others to come to you; you have to go to them sometimes ~ Winnie the Poo

I know I haven't written in a long while; this bog was started a lifetime ago, as a means to keep friends and family updated about Bob, not about me (though a "little" bit of "me" may have crept in, once in a while . . .). But I know that at least a couple of people still check this blog now and then, to see if I've updated lately and as such, I felt I should at least indulge those few, to let them know what's going on, on my end. Grief is an astoundingly self-absorbed, unbelievably irrational path, like nothing I've ever known, so bear with me, please . . .

So, after initially believing I should to "tough it out," out here at Wrenwood for a good year, per all the grief and widowhood "advice" that abounds—#1 being that one shouldn't make a rash decision after a life-changing event for at least that long—I've decided enough of that bullshit and am moving to the city (St. Paul) while simultaneously putting the house for sale, by owner. "By Owner," meaning for sale by me. Meaning, I have never been a realtor, nor do I play one on TV, and have no idea what the hell I'm doing, but feel in my heart it's the right thing to do, for me. So, talk to me next week, when the rules change on me, yet again, without warning.

Trying to "tough it out" out here means enduring another year of mental anguish, day by day, minute by minute, re-living the horrors of the past year and a half, not able to move beyond. n exercise in self-torture for which there is no prize other than endless heartache, living in the past, allowing life to pass me by. . . is that what Bob would want for me? A resounding, "NO!" is his answer, I hear in my heart. Shortly before Bob died, we had a conversation about his pending death (we had endless conversations about endless topics, but this was one that didn't happen frequently; as if he hadn't had enough shit handed to him over the entire year and a half, to talk about his death was about as insulting as it could get . . .). I asked that after he passed, would he please come back to haunt me in his afterlife, not in a scary "Ghost Adventures" way, but just to let me know that he was okay, that he was with me. He told me that he would come as a great horned owl, outside my window. Alarmed at this answer, I exclaimed, "Oh, no! We hear great horned owls out here all the time! How will I know which one is you?!?" Bob's response was, "Don't worry, you'll know. . ."

I can't even begin to go into detail how agonizing these past few months have been, for me, without him . . . grief is amazingly self-absorbed, so insanely close to insanity as one could ever been, I can't do it justice, to describe. . . I don't want to be around "old" friends, as I can't bear to hear that their lives are happily continuing, while mine is stuck spinning in mud, that they should "know" better than to rub their happy shit in my face . . . I become insanely jealous, hearing about vacations, lives moving on, milestones reached, aggravated to hear someone bitching about a spouse over minutia . . . I hate knowing that I am not fully in the present, as my mind is continually wrapped around that which is no longer, a life that will never be again, but feel at its mercy . . .

Grief is bizarrely irrational, makes no sense, skews even the most reasonable mind, encompasses, engulfs, twists and torments . . . in my mind I know all this, yet can't make sense of it, try as I may . . . I'm sick of platitudes, of quick, under-the-carpet sweeping "explanations" of life, of dying and everything in between, because no one knows, no one really knows what another suffers . . ."same but different," my friend Lisa astutely says, of loss; no one's loss is ever the same as another and it's arrogant, offensive, insulting to try to tell someone else they "know," and sometimes it is just easier to be alone than to subject others to this turbulent ride. . . if I ever thought I was close to crazy before on this Krazy Karival Ryde, I can now attest, I was never thisclosetoinsanity as I have these past three months since Bob died, and a would never wish this path on anyone, ever.

But at the same time, I know in my heart, that it wouldn't feel so godawful painful if I hadn't loved Bob so deeply, that it wouldn't be so hard if I hadn't cared so much for him, that I wouldn't have him on a pedestal so high if he hadn't been such a breathtakingly beautiful person—inside and out—to begin with. . . I gave him my all, these past 19 months, because he was so worth the fight, and I would have fought, would have cared for him as I did, till the end of time, he was so worth it . . . and I'm coming to know that he fought so hard for his own life because of the immense love that filled his soul, for me, for life and everyone and everything he held so dearly, and didn't want to let it go . . . what a privilege, to know that love . . .

To have experienced that immense love, in all its beauty as well as its flaws, in its highs, lows and everything inbetween, I know, I am eternally blessed, so grateful, so indescribably honored, to have had the gift for as long as I did and will carry that gift with me, forward, to the end of my days . . . because of all that, I felt I had to forge on in this house, as though I had something to "prove," that it was the "sane" thing to do, to continue living out here, without Bob, in spite of being continually flooded by sad memories, horrific images of all he had to endure the four months of hospice (not to mention the terrible times we endured here, before hospice . . .). And in the past three months of "toughing it out," I finally learned that even in grief—in spite of, or because of, I'm still not sure—often, what makes no sense to everyone else in their "sane" or "right" mind, becomes crystal clear to the one in mourning and that is what I need to follow, what's in my heart. . . but, I'm getting ahead of myself . . .

Long story even longer, I was at the proverbial rope's end a few weeks ago, wondering why things were getting harder, not easier, out here. I don't cook any more, don't eat, can't sleep, am delving deeper and deeper into despondency . . . on a whim, I hopped on Craigslist, perused the "Homes for Rent" section, and happened upon an ad for a gorgeous old house in the Cathedral Hill neighborhood of St. Paul. Reasonable rent, perfect size for me and two dogs . . . called the owner and over the next several days, had long conversations, explanations, many tears, and before I knew it, was signing a lease, paying the deposit, and slated to move in mid-August.

I drove home after that event, collapsed onto my couch and cried like I had yet to cry since Bob died, assaulted by endless thoughts of what have I just done? I don't even have our house close to being ready for sale again, it's such a terrible housing market—what if our house doesn't sell, if I move am I leaving Bob and all we had together behind, am I dishonoring his memory and all he went through, what if, what if, what if. . . as I lay on the couch heavy sobs wracking my body, I sent up a prayer to Bob, to please help me, give me a sign that what I had just done is the right thing . . . so tired, I tried to rest my eyes, calm my mind, but in spite of my best efforts, couldn't find the peace I longed for. . .

Suddenly, through my tears, I saw a flash of white out of the corner of my eye, outside the patio. I was so tired, I wanted to simply ignore the flash, but something compelled me to get my ass of the couch and go check it out. I walked out onto the deck and slowly scanned the back yard. This time of year, our backyard is so lush and full, it's nearly impossible to discern layers of foliage from anything else, but still, I was compelled, as if by force, to stand on the deck and scan the landscape, looking for what, I wasn't sure. Suddenly, I locked eyes with the penetrating eyes of a great horned owl, perched on a low branch not 30 feet or so from the deck. How I found it, I couldn't tell you. It was broad daylight, an odd time for a great horned owl to be out and about; no crows were harassing it to give its hiding place away nor any sunlight to spotlight its location . . . it was so close, I could see its eyes blinking, see the patterns and color variations in its feathers . . .

I stood still for several minutes, eye to eye with this immense bird of prey, until it finally looked behind, then back at me for one long last gaze before taking off, disappearing into the woods behind our house. My owl had come to me, as Bob said he would, and at that point, I knew, for certain, that he will always be with me, no matter where I go.

And that is the story of how Winnie the Poo and a great horned owl has coaxed this redhead from the woods. . . I move on Monday, and in the meantime, am getting the house ready for sale. Feel free to pass the word on, or to contact me if you or anyone you know might be interested in a beautiful little house in the big woods . . .

p.s., and just for the record, in case some fear I've been sitting in a catatonic fetal state out here in the woods—I do get out, I am doing things, but in tiny, incremental baby steps. I spend a lot of time with family and a few friends; I got my motorcycle license a few weeks ago (no bike yet—anyone know of a good Honda/Kawasaki/Yamaha 250cc for sale?); I walk the pups daily (sometimes 2-3 times a day, depending on how wound-up Rocco is), I joined a wellness studio and am haulin' ass on kettle bells 3x/week, I still can't bring myself to cook much these days, but thank god for Trader Joe's, I will be caring for my adorable 8 month old nephew a few days a week, starting in September . . . I am continually amazed that every day, in spite of the sadness that weighs heavily on my heart, I get out of bed every day, and do something. And in spite of the immense, crippling weight of grief, I actually feel happy at times, still find myself laughing occasionally, am rendered breathless at the sight of a glowing sunset, or an intense thunderstorm, and am eternally grateful for those who bless me with peace, patience and unspoken understanding, on this journey, which is pretty much everyone I know . . . xxoo)

Hollow life, hollow world

I recently discovered I need not just a new washing machine but a new dryer, too, as both now have a laundry list (ha. get it? laundry list? Man, even while grieving, I'm still punny . . . or not. . .) of issues that I've decided would be best rectified by replacing. Washer leaks all over if I do more than a medium sized load, dryer makes a most hideous screeching sound that both doggies high-tail it to the basement to hide . . .

So my latest pasttime has been researching washers and dryers online, talking to people, making a few stops here and there at appliance stores, to see what's out there, and my first conclusion is that there should only be three models of washers and dryers to choose from. But there's not. See, y'got your front loaders, your top loaders with agitator, your top loaders without agitator, washers with "sanitizing" features, dryers with "steam" features, "smart" machines that automatically fill up with just the right amount of water, based on the weight of your load, delay timers, multiple washing programs, anti-vibration systems, spin speeds that break the sound barrier . . .

Gone are the days of the simple dial and "start" button. Now, washers and dryers look like the cockpit of a 747. I am overflowing (kind of like my washer) with appliance information overload that I'm tempted to say, "hell with it all!" and take to scrubbing my clothes on the rocks in my front garden and hanging them up to dry on the line outside. All year. Even in winter. For the rest of my life. Can't seem to make a decision to save my life these days. . .

This search has been going on a good couple weeks now; today, I took a Sunday drive over to the Roseville area, hit ApplianceSmart and the Sears Outlet center to see what they had in stock, with every intent on whipping out the plastic and walking out with something . . . instead, I talked appliance features with salesmen who reeked of cigarettes, till my eyes glazed over and my head started to not really care which machine had what "latest technology." Suddenly, they all seemed ridiculously complicated, so instead, I asked for brochures, a business card and left. Found myself driving east on Larpenteur Avenue and before I could come to my senses, took a left onto Malvern and drove north till I was at 1901 Malvern, the house Bob lived in when I first met him. I was crying even before I got to the house, and almost didn't recognize it. . . it's had some updates in the 18 or so years since I last saw it, but I could still, easily imagine Bob's sweet little Mitsubishi Eclipse in the driveway, see him standing on the front steps, dressed up for work, long black overcoat, waving good bye to me as I drove back to Winona . . .

I cried the entire drive home, so many memories displacing the tangle of appliance information that had filled my head . . . talking to my mom later, she asked why I did I do that, why do that to myself, drive by his old house . . . I have to, I told her. I need proof that Bob was real, that what we had for 18 years was real, that he had an imprint on this world . . . these tangible landmarks of our life together are what does that for me, even though seeing them suck the breath right out of me, choke my throat, grip my stomach, and I haven't been able to stop crying all day. . .

I met Penny and Jim for lunch in Mankato for Father's Day last weekend, to catch up with them in person, even though I'm sure Jim had no desire to "celebrate" such a holiday . . . I gave him two cute photo frames from Ikea, in the form of a unrolled roll of film (how perfect for Bob!), with spaces for several 4x6 photos. I filled each space with the most beautiful pictures of Bob that I could find, which was a hard job because every picture I have of him is the most beautiful. . . When I went back down to St. James a few days later to see Nancy and her family who were in town for a few days, I noticed the pictures were nowhere to be seen. Not surprised . . . when I was saying goodbye, Jim hugged me tight and thanked me again for coming down for Father's Day and for the pictures. "It's going to be a while before we can put them up," he said quietly, "it's so hard to look at pictures of Bob yet, still seems so unreal . . . " I told him it was okay, that they have to do what's right for them, and if they never put them up, that's okay, too. I just wanted them to have the pictures. . .

Funny, I can't stop looking at pictures of Bob, can't stop reading the beautiful letters he wrote to me, can't stop trying to piece together the husband who was so visciously taken from me so long ago, yet also trying to honor and remember the journey he and I traveled this past year and a half, as well . . . I don't want to forget anything about him, and our life together, but I know I've already forgotten too much. That's why I drive past the Hickory Inn. That's why I drive past 1901 Malvern. That's why I can't stop looking at pictures of my achingly handsome husband. For some, it may seem like self-induced torture. For me, it's to remember. To make Bob real again, to try, somehow, somewhat, to fill the gaping hollow in my heart, my soul, in this world without him.

The week following Easter . . .

I didn't post much about the last week of Bob's life, as it was an incredibly difficult, almost out-of-body experience. . . an emotionally, physically tough week and I hardly left Bob's side at any point; actually, didn't much leave his side for over three weeks, maybe just to walk the dogs is about it, when things started slowly but surely sliding . . .but I want to write about it, have to, to try to purge my mind of the images that still hold such a grip on me, infiltrates all I think about, all day, every day, just want to make more room for the good memories, the beautiful images of a beautiful person and our life together before cancer. So indulge me, ignore this, whatever. It's really just for me, to get all this out, not much more . . .

Easter was a gift, an amazing, selfless gift from Bob, to all of us, but a day like that was not to happen again . . . Bob's parents left on Sunday, with Nancy and the crew, so happy in thoughts that Bob was doing so well, had rallied for them. "Call when you want or need us up again," were their parting words . . . that night, Bob and I continued to talk and joke around, lots of laughing, sharing, talked about everything and nothing . . . right now, in that crystal clear knowledge of hindsight, I wish with all my being that I had recorded the conversation, had held onto each word in my mind with a tight grip because now, I don't remember what we talked about at all . . . as my dear friend, Lisa, says, If only life came with "Play," "Pause," "Rewind," and "Forward" buttons . . . when it was time for his nightly meds, Bob sat at the edge of his chair, counted out his pills (without resistance or questioning, which he had been doing a lot of in the past week or two, as his mind slowly succumbed to the progression of the disease), downed every one of them without any begging or cajoling on my behalf—even his liquid meds, which he despised because of the taste. With that act, as though suddenly touched by the Fairy Godmother's wand, "poof!"My Bobby was gone, replaced again, with the very, very sick version . . .

Sunday night was the antithesis of the beautiful day we'd just experienced . . . a continuous struggle for both of us, Bob resisting or criticizing nearly everything I was trying to help him with, me begging and pleading for him to take his meds (he had a few that he took right before he went to sleep), to please try to lie down and get some rest; he'd forgotten he'd taken his earlier meds and wanted to re-take everything, then later resisted taking the last of his evening meds because he was sure he had already taken them. . . going to bed might or might not happen, because he was tired but didn't want to sleep, maybe wanted to go to the bed, maybe wanted to go to his chair, couldn't make up his mind . . . I felt so bad that I took that anger and criticism so personally, that I couldn't immediately know in my heart that it wasn't my Bob saying those things—that it was a horrific disease taking over—and respond accordingly. Instead, I cried because I wasn't doing enough, that I wasn't doing anything right, because he's so annoyed and frustrated with my lame efforts, cried because I was watching my husband being taken from me, right before my eyes . . . and I hated crying in front of him, hated adding to the layers of everything he was already dealing with, to have a despondent, helpless wife on top of all that . . . all this is part of the "process," the agitation, the confusion, restlessness, the lashing out—I knew that, from all the reading about hospice and "end of life" processes that I did, from talking to Bob's hospice nurse and doctor, but reading it and living it are two entirely different experiences. Nothing could prepare me for this deterioration of not just Bob's body, but his mind. . .

That night, before bed, Bob sat on the toilet and cried to me. . . cried because he was in so much pain, cried because he said couldn't do all of this any longer, because everything was so hard, couldn't remember anything, knew he was getting so confused but could do nothing to stop it, knew he didn't have much time . . . I can count on one had, with fingers left over, how many times Bob cried or complained in the 19 months this hell on earth has dragged on . . . all I could do was sit on the floor at his feet and hold his hands, or drop my head into his lap, wrap my arms around his waist and cry with him . . . I offered extra pain medication, offered to help him to bed, to his chair, where ever sounded most comfortable for him, which was neither . . . I don't know how long we sat like that, both of us simply crying . . .

Sunday night began the rapidly spiraling downward path. . . I've likened Bob's hospice journey to a slow airplane crash, rapidly picking up speed and barreling out of control that last week, nothing we could do would stop the inevitable crash. For the first few months in hospice, Bob cruised along, more stable than he had been all year—not to discount all the issues that came along following the horrific surgery in August—but we had very few new issues arise those first few months. But, since maybe mid March, every week or so, we'd take a sharp drop in altitude, Bob's health would hit a patch of turbulence then smooth out, though never back up to the point from which we dropped. This pattern repeated itself over and over, till Easter weekend, when the week-long nosedive ensued. . .

Bob's regular hospice nurse was supposed to be out on Tuesday after Easter, but was sick, so a replacement nurse filled in. Bob was responsive and seemingly attentive, but I could detect a lot of confusion, mixed-up information he was sharing with her. That was one of endless things that amazed me about Bob throughout this ordeal, how he could pull things together when he had to—when talking to his doctor or a nurse—no matter how bad things were for him, he had this amazing ability to make things look and sound a helluva lot better than they really were. I don't believe he was trying to play hero or trying to hide anything; it's just how Bob was in everything he did, even in acute illness— always at the top of his game, never played the victim card, even in his most messed up state, was the consummate class act . . .which often made my job all the more difficult, as his advocate . . .

I told her that he's become incredibly restless especially at night, getting up constantly, saying he needed to go to the bathroom; I'd get up every time, but often, nothing happened, so back to bed we went. . . lather, rinse, repeat numerous times, each time seemingly more difficult than the other, I could tell his strength was waning . . . around 5 a.m., he'd finally want to go out to his chair. . . but I told the nurse that didn't want to give him any more Haldol, given the events of the weekend before Easter. She recommended another drug, Thorazine, and called it in to be delivered that night.

Tuesday night, even with Thorazine, was a repeat of Monday, up and down, up and down, up and down all night long. . . at one point in the middle of the night, I heard Bob cry out my name; I leapt from the bed, ran out to the living room, found him lying on the floor in the hallway. He told me he had somehow lost his balance and fell over. More crying on my part, for not hearing him when he got up, for not being with him to prevent him from falling, for the pain he might be in now, possible injuries because of the fall, for the confusing babble that was coming from his mouth, nothing making any sense, because my Bob was falling farther and faster from me . . . I helped him scoot to the edge of the living room steps and we were able to get upright again and back into his chair . . . I don't remember at all, the details, the particulars. Just flashes of memories . . .

At some point early in the week, Bob started a serious bout of diarrhea that just wouldn't quit. Where it could possibly be coming from, I was at first baffled, as he hadn't eaten anything substantial in well over a week. Eventually, I theorized that perhaps it's his body shutting down, releasing anything that was "backed up," so to speak. Narcotics cause intense constipation, and Bob had been on pretty high doses of dilauded and methadone for quite a while (they had decreased it substantially when he was at Bethesda, but as time progressed, very likely the tumor was growing and the need for additional pain meds became necessary again). Along with the narcotics came strong doses of laxatives to help counter the narcotic effects, but from his hardened, distended stomach, it's likely the laxatives were barely working, at best. I truly felt that Bob's body was slowly giving into the inevitable . . .

Because of the diarrhea, we definitely were up nearly every hour, on the hour. I'd hear him waken and jump from my side of the bed to be close to his side as he slowly stood up and made his way to the bathroom. I thought about moving the commode to the bedside but with all we were contending with, I decided it would end up being more difficult. And, with Bob's restlessness, despite his waning strength, he still insisted on getting up and making his way to the bathroom, then perhaps the living room, over and over . . .

At some point, maybe Wednesday it was, Jim and Penny came for another few nights; my mom joined the group later in the week, Friday, perhaps? Much of the details are already a blur. Bob's good friend, Wally, also came up for a visit. I warned him about Bob's condition, that he sleeps most of the day, doesn't appear to be real cognitive, may drift in and out of lucidness—but Wally was undaunted, and came despite Bob's condition. A few of Bob's friends had been so amazing like that, so fearless of the illness, of the situation, and just wanted to be with him, to see him, say "hi," simply because of their love and friendship for Bob. I am forever grateful for Wally and Paulie . . .I love you guys, and Bob so did, too . . .

It was a tough few nights; Bob fell again, Thursday night. Thankfully Penny and Jim were with us, as this time, Bob's fall was not in a "convenient" spot and there would have been no way for me to get him up if it had just been the two of us. On Friday, Penny and Jim ran home for the night (they told me later, that throughout the year, often they had to go home, even if it was just for a night, to simply implode from the weight of it all, to have their own melt-downs, away from where Bob would see them, put themselves together again for the next round . . . I think of them so much, what all of this has been for them, seeing Bob go through all he has, from childhood, on . . . that's a whole blog entry of its own . . .

My mom stayed with us after Penny and Jim left, not wanting us to be alone any more, because of the mounting issues. She pretty much kept to herself in the basement, but like a little magic fairy, would pop up if I needed her for anything—to run an errand, grab some milk, just to sit and talk with us. . . Bob was quietly going downhill fast, needing help, needing something that I couldn't define, so afraid to be alone if something worse happened . . .

The last few nights became a nightmare. . . Bob was getting up every hour, on the hour to go to the bathroom, so weak and unsteady on his feet, but still insisting on going, even medication would not slow him down . . . pretty much every time, there was an ungodly mess in his briefs; thought again about bringing the commode right to the bedside, but quickly realized that would probably be harder to try to clean him up from that point. . . often, we're changing not only the disposable brief, but pajamas, socks and shirt, too. . . some times, I had no other choice but to help him into the shower for a total wash-down, it got so bad. That was so hard to do, given his incredibly weak, feeble state at that point, but I did not want him to be messy like that, I knew he would just hate that . . . that's one thing he'd said all along, is how he just hated to feel dirty, but in his current condition (since the surgery), all he feels is dirty . . . broke my heart into a million more little pieces, if that was possible, to hear him say that—with that simple sentence, summed up the dignity and self worth that cancer and the fucking "curative" surgery took from him, among endless other things . . . often, we had to change his dressing again, too, if the diarrhea was especially messy; often ended up soiling his dressing . . . bedding often had to be changed too . . . nights were long, neither of us getting any sleep at all . . .

Friday (April 29th), his regular hospice nurse popped in for a visit; after sitting with Bob, talking to him and observing him for a while, she pulled me aside and with tears in her eyes, told me she really felt the end was near . . . she couldn't say whether it would be a week or two or just a few days, but felt Bob was going downhill fast . . . told her about the substantial diarrhea for the past few days now; she agreed, maybe the laxatives he had been taking were finally working through his system, maybe his system was just finally letting things go . . . I asked her if there were any meds we could simply discontinue, to simplify things, given he's taking so many but maybe there are some that are kind of pointless now . . . we eliminated a few, to make things easier on Bob. . .

His sleeping patters by Friday had become way skewed; sleeping most of the day—a deep, almost unrousable sleep—and when he was awake, was incredibly confused and nonsensical (which was only for short bouts of time); he often got angry at me, when trying to give him his pain meds, saying he already took them, accusing me of trying to give him too much . . . sometimes I just gave up, to make things easier on both of us, but was fearful his pain will suddenly amp up and cause him incredible discomfort, so I tried as much as I could to convince him that I would never, ever give him more medications that what he has scheduled, begged him to please trust me . . . when he talked, he reminded me of a confused, argumentative drunk, words slurring, skewed logic that makes perfect sense to him but none at all to me . . .

Saturday night, I decided to try something different. Thorazine didn't seem to be working to address the agitation, to help Bob rest at night, so I asked if he'd be okay to try Ativan. . . it was a confusing, frustration conversation, explaining to him why I wanted to do this, but eventually, he looked at me with exasperation and said something like, "why not, what does anything I say matter any more, anyhow?" Again, heart broken into a million more little pieces, it's now powder . . . my reasoning was that ativan's supposed to be the kinder, gentler approach to the night-time agitation, just supposed to relieve the anxiety to help a patient rest, but not zonk them out like Haldol or Thorazine might. It had worked well with him in the past; maybe we both can finally get more than a half hour of sleep at a time . . .

I gave him one mg at bedtime, knowing that in the past, Ativan was a very mild anti-anxiety drug for Bob, and that I'd hate to try to convince him to take another so soon, if just a 1/2 a mg didn't work. . . almost immediately, as soon as his head hit the pillow, he fell asleep, on his back (which he normally never does), and was deep in slumber. I could barely lift both his legs onto the bed, much less get him onto his side the way he prefers, to get him into a half-comfortable position on my own, he was completely dead weight. I did the best I could without his assistance, but had to leave him on his back, and crawled into bed next to him, wrapping my arm around his waist. Not much sleep that night. . .

The next morning, Bob was in the same position, hadn't moved an inch all night, hadn't even gotten up to try to go to the bathroom. I got up and tried to rouse him, but no avail. He was still breathing, but deeply and completely unresponsive. I looked at the clock, a little before 7. My mind started racing; had the Ativan done this? What have I done? Oh my god oh my god oh my god . . . I ran to find my phone and call the hospice on-call nurse. I got a hold of her, spewed out my story; she said the Ativan would not have done this to Bob—one dose wouldn't last all night; maybe Bob was finally, completely exhausted from the several nights of up and down, up and down, she also gently reminded me the stage Bob is in, that maybe he is nearer the end than we realize . . . she said to keep an eye on him, call back if I feel I need more assistance . . .

I went back to check on him, and once again, tried to get a response from him, as I was worried that because he hadn't gotten up to go to the bathroom all night, we'll really be in for a mess this morning. This time I did get a response, but immediately regretted it. In a groggy, seemingly drug-induced stupor, Bob awoke and clumsily tried rising from the bed, but couldn't hold himself upright and flopped backward, tried to sit up again, and again flopped backward. It was then I realized he was lying in a large pool of liquidy stool. . . he struggled to get upright, while I struggled to keep him lying down, so I could try to clean him up at least somewhat, at the bedside, before we could somehow get him to the shower (which in my heart, I knew wasn't going to happen), given the sheer amount of stool on the bed . . . I sternly instructed Bob to stay in bed, ran to grab my phone and called the hospice nurse back as I ran back to the bedroom, where I found Bob still struggling to sit up. The nurse answered, and I hysterically spilled the story of what was going on; Bob is awake, trying in vain to get up, wants to get up, is covered in diarrhea and I really need someone out here to help now!

The nurse on the other end told me help wouldn't be able to get to us for at least an hour, maybe an hour and a half; the next on-call person doesn't come in till 8:30, she herself is a good hour away from me . . . I started screaming at her, "Are you kidding me?! Bob has been in hospice for FOUR MONTHS and in that time, we've never asked ANYTHING of you people even though you relentlessly bugged us with offers of all kinds of services, but now, when we REALLY need your help, you tell me it'll take a fucking HOUR???!!!" The nurse interrupted me, telling me that they don't have any staff in our area; I interrupted her, crying, "Then what the HELL are we doing in Fairview's hospice program, if you can't service us, especially in a CRISIS???!! Oh my god . . . I need help NOW and you can't give that to me???" she started to say something but I hung up, nearly hysterical.

I suddenly remembered that neighbors down the street from us, husband and wife, are both nurses, he was a hospice nurse for years, recently retired. I had talked to them a few months back and was told, "If you ever need anything, please call . . . " I need help so badly right now, please, please please help us now—I called for Mom upstairs and asked her to run down to their house and see if they're home . . . she left, I continued to try to clean Bob up, again he's fighting everything I was trying to do—I stripped his clothes off, and started wiping from the feet, up, crying and begging Bob to not fight me, to please keep still, to hold on, help is on its way, praying praying, praying that the neighbors are home and can come to help us . . . and all the while, I was really only making the mess worse, but just wanted to clean him up as much as I can, do something to try to keep him occupied, keep him from trying to grab for his walker . . .

Mom returned, said no one answered the door. I almost fainted in frustration . . . I picked up my phone, scrolled down to neighbors who live across from the nurses, handed the phone to Mom and asked her to call them, ask if they have a phone number to call the nurses. Maybe just maybe they didn't hear my mom at the door . . . she got a number, I grabbed the phone and called. A voice answere. "Sharon?" I asked frantically. "Yes," said the voice on the other end. I almost fainted with relief. Again, words tumbled from my mouth as I told her what's going on and asked if they could please help at all. She said they'll be right down. . .

Not five minutes later, Jim and Sharon, the nurse neighbors, arrived and found us in the bedroom. . . I stepped back as they immediately took over; I grabbed supplies as needed, helping as much as I can. I was in awe with their skill and expertise and the gentleness and reverence with which they helped Bob. Between the two of them, they gently, skillfully finished removing his clothes, washed him, turned him from side to side to clean him well . . . at the same time, they removed soiled bed linens, cut his soiled shirt from him (to disrupt him as little as possible), rolled the soiled blankets into a ball and expertly slid new bedding underneath Bob's limp body . . . at once, time was moving through mud and racing by. . . eventually, Bob was thoroughly cleaned, the bedding changed and he wass gently rolled onto his side, fresh blankets wrapped around him . . . he had settled down, and was sleeping soundly. An odd sense of peace has settled in the room.

In the meantime, Mom called Penny and Jim, who were on their way, as well as my sister, Gretchen, who lives nearby and can offer an extra set of strong hands to help . . . Jim and Sharon were gentle but blunt in their assessment of the situation. Bob was very near death . . . they offered me wise advice about his medications. "Pain medication and Ativan are a must at this time. You want Bob to be as comfortable as possible—keep up with his pain medications, and continue giving him Ativan at regular intervals, to keep him calm and resting. Crush the pills, mix with a tiny bit of water, and slowly pour the liquid under his tongue or inside his cheek, so he doesn't choke, it'll absorb transdermally. . ."

Eventually, nearly 10 a.m. (three hours after I first called Fairview hospice on-call), a hospice nurse arrived just as Penny and Jim pull into the driveway (who drove from 2 1/2 hours away. . . what's wrong with that picture, I don't even need to say). I told the nurse everything has been done, by our angels from down the street, that nothing more is needed . . . she gave me some additional advice about Bob's meds, and shortly after arriving, left. Jim and Sharon stayed for a while longer, and then left, saying they'd be back a little later to check on us. I was crying, so grateful for all they'd done, for all they'd shared, for coming to our rescue, for being so kind and respectful to Bob . . .

I thought I could finish this in one last entry, but clearly that isn't going to happen. . . I have to take a break from this. . . finish another time . . .

Quantifying, qualifying grief . . .

I find it a funny phenomenon, this tendency people have, to quantify and qualify grief, as though it's a parcel with three dimensions that we can grasp, contain, measure. . . maybe it's our desperate way of trying to hurry through the hard stuff, the uncomfortable stuff, give some kind of trail markers, guideposts, measurement to the unknown to try to make the journey a little easier, quicker, get it the hell behind us sooner. . . well, it ain't working for this girl, I can tell you that much . . .

Had someone tell me that she heard it takes about three years to get "through" the mourning process. . . which means that May of 2014, I should have my shit together again and all this will be behind me. Have had many people tell me to not do anything drastic for at least a year—don't sell the house, don't chop your hair off, don't make any major purchases—so here I sit, stagnant, wallowing, with a mop of hair that looks so ratty it's in a pony tail 24/7, not knowing which way to turn, what to do first. So, instead, I rearrange my furniture, swap out a few rooms and get some serious deep cleaning done in the process, helped Penny and Jim strip the deck. . .

Couple weeks back, very shortly after Bob had passed, a neighbor stopped me on the road and after expressing condolences, chirped to me, "Well, I hope things start to look up for you now!" As though it was such a relief to have my beloved Bob die, to free me from the burden. . . caring for Bob was never a burden to me, that's the thing about the long, sad, horrific Krazy Karnival Ryde we were on. It was hard, it was terrifying, immeasurably sad, hair-pullingly stressful at times, but never, ever a burden. It was an honor that defies description, to be at his side along that long, scary journey.

I once read about "caregiver's remorse" or something like that. . . I was a lot of things during the course of this path in life, but can honestly say I was never remorseful, never resentful at "my" situation; any time I'd feel the least bit sorry for myself, all I'd have to do is look at Bob or think of all he was going through—snuffed out that pity party in an instant . . . oh, believe me, I was no Florence Nightingale and likely won't get any extra points on the fast lane to heaven, but I told Bob over and over, that I would do my best to take care of him and would do it forever, if only he wouldn't leave me, if he wouldn't be taken from me . . . just the other day, after confessing that I had had a tough couple of days (they come in waves, often right after having a pretty okay day, knock me right off my feet and pummel me, over and over, with memories, emotions, wave upon unrelenting wave . . .), had someone say to me, "Well, things should be getting a little easier for you now, right?" Had to remind her that it's only been three weeks since my beloved husband of 15 years has passed . . .

No, nothing is easier. Right now, everything is getting harder and harder, as the days and weeks go by. Maybe it was because I was in a fog, on auto pilot those first few weeks, maybe it's because Bob's official death certificate just arrived in the mail a few days ago, and I know have it in writing that he is officially, legally gone. Maybe it's because I've had countless phone calls and appointments the past few weeks, with "grown up types" whose job, in part is to officially, legally wipe Bob from my life—off our mortgage, from our IRAs, off credit cards, bank accounts . . . So according to everyone, either I get at least another three years to feel lost and heartbroken, or by now I should be pretty much over this and well on my way to Puppies-and-Rainbowsville . . .

Someone told my sister, "Well, at least they didn't have children. . ." I was thinking the other day, I wish now that we had had children . . . maybe that would give me some sort focus, a reason to get my shit together, those ducks in a row, impetus to get up in the morning . . . A co-worker told Bob's sister that at least she had these last few months to say good bye to Bob, because her own brother was killed instantly in a car accident . . . I could easily make the argument that at least they got it over with quickly, and can now start picking up the pieces and get on with their lives. Our ugly drama was dragged out for 19 months, and those last 4 months in hospice were not a gift. They were horrific, so hard on Bob, in endless, unspeakable ways, a death sentence . . . they weren't precious, a "gift" or anything of the sort. I would bet everything I own that Bob would have agreed that dying sooner would have been a welcomed respite. . .

Someone else gushed to me, at Bob's Celebration of Life service: "Just think of this as a new adventure, Jen! As a wonderful new opportunity to reinvent your life! Doesn't that sound exciting!?" Thank god I was wringing the snot right out of the wad of Kleenex I had in my hands, or I would have bitch-slapped her into the next century. (Sorry, mom, that one was warranted . . .) Instead, I said, "No, it would be an adventure if I'd had some say in it. I kinda liked our life the way it was, even when Bob was sick, because he was with me, he was my life . . . "

And don't read this wrong. Even in the depths of this most intense sadness that I have ever, likely will ever experience in my life, I'm still plugging along, somehow getting through each day, being productive, even. I walk the dogs. I pay the bills. Mow the lawn. Getting some projects done around the joint—painting, moving some furniture around, freshening up the place a bit. Bought a new computer the other day, and will be brining my old one down to Penny and Jim's and get them set up in the right century (I think their old computer still runs on DOS and uses something called "floppy disks" . . . j/k, P&J!) Might even go get a few more plants for the deck this weekend, weather permitting. I have family out to Wrenwood now and then. I even talk on the phone, though not much, still with just a few select people, still am not up for talking to or meeting with the masses, yet.

And guess what? I laugh now and then, too. When reading an e-mail from a friend, when talking to my sister or mom, when stopping to talk to a neighbor (which is still a rare occurrence, still just too hard to do . . . might even check out a grief therapist, though finding a good therapist is harder than finding a good hairdresser, so that's gonna be a work in progress.

Along with the daily routine, there are constant reminders, constant "firsts" to plunge head-first into, events or moments, even, that suck the life right out of me. When Penny and Jim came up to help me with the deck, we went out to eat in Stillwater one night. No body spoke of it during the meal, but we were all heavily conscious of the empty 4th chair across the table from me. There were times I could barely swallow my food, glancing at the chair where Bob should be sitting. When we got back into the car, Penny mentioned it first. . . I don't know when I'll be able to drive to the North Shore again. That was "our" place to go, to get away for a weekend, to take the dogs and go hiking, climb Oberg Mountain, have a beer at Fitger's, lunch at the New Scenic Cafe (which is maybe now called the Old Scenic, since it seems like forever since we've been there . . .) But those are all part of the dealio too, the "firsts. . ." They suck. Hugely. And they're a never-ending barrage . . . but I plug along, in spite of them, despite them. What else can a girl do?

I'm not saying everyone who's lost a loved one does or should do what I do. My words here are not a "Blueprint for Grief." I would never assume or suggest that to anyone. Because I can see how easy it could be to just stay curled up in a ball and cry the day away, instead of plug along. There are those days for me, too. Or take the other path and completely immerse oneself in a job, a hobby, resort to a bad habit/vice, even. I've had a few of those moments, as well (haven't taken up smoking again, gratefully, but I can definitely see how someone could succumb) . . . grief is an unpredictable beast . . . whatever gets you through the night, is all right, all right, in my book. . .

My whole point here is that grief is as unique and varied as there are people grieving. You can never compare anyone's situation to anyone else's. It's not right, it's not fair, it completely disregards the individual experience, takes the necessary focus away from the one who's mourning. Grief, peeps, is not neat and tidy, does not follow a time schedule, doesn't fit into a pretty little package for us to define and describe, predict. It's the most indescribable, unpredictable event one may likely ever experience. Every single situation is different, with endless variables, personal issues and takes on the situation that affect the whole process. One person might seem to "get over it" pretty quickly, while another may be visibly, irreparably damaged forever, the rest somehow fall somewhere within the continuum. And even those "rules" can and will change. Yearly, daily, by the minute, by the second, contingent on each person, each view of life, and the subsequent life events that follow the great loss . . .

I am grieving the loss of my beautiful husband and the life we had before he got sick. I'm grieving the loss of my life and who I was, pre-cancer, I'm wallowing in the "shoulda, woulda, coulda's" even though we had the "blessing" of the past 4 months to talk a lot about so many things, to square things away, to help "prepare" me for my future without Bob. Fun conversations those were, lemme tell you . . . I am grieving the immense, senseless, traumatic suffering Bob endured for 19 months, the horrific things I witnessed him go through in that time (this blog, my words can never do justice to the endless suffering I watched Bob endure. No one, not even I, will ever know just how awful that cancer journey was for him . . .) and every little thing that is wrapped up in those events . . .The way I see it at this point for me, I've got a whole lotta mourning to do. Right at this moment in time, my perspective is that it will take a helluva lot longer than three years, and nowhere close to "getting a little easier by now." In my head, I know things will get "easier," (and by "easier," I don't mean "easier." As my aunt said, I know I'll just get used to, learn to adapt, to living with a gaping hole in my heart.) But right now in time, my heart does not know these things. Heads and hearts operate on two very different systems, never the twain shall meet. . .

One can never, ever tell another how long they should grieve, how they should grieve, what they should or shouldn't do . . . unless you've been there. Even then, it's a tenuous path to tread, and I'd suggest doing it lightly, gently. . . if you dare.

grieving rituals . . .

For someone who loves to be around people so much, I have never wanted to be so far away from people right now . . . sorry neighbors, if I scurry into my house when I see you walking down the road, sorry friends, whose phone calls and text messages I don't return. . . right now, immediate family takes front and center, and even then, I vacillate between wanting them right next to me (and I mean right next to me, as in, sleeping in my bed with me, next to me), to feeling edgy and irritated with the countless daily "check in" calls from everyone and would love it if y'all just left me alone already. . . (but not really . . .)

"How are you doing?" has suddenly become my newest unfavorite, vomit-inducing phrase in the history of history, though it's also become a little joke between my sis, Jill and me. . . after about the 11-teenth time, asking with all the genuine love and kindness in the world in her voice, "How's our Nenny today?" I finally answered, with the best, most over-the-top, peppy cheerleader enthusiasm I could muster, "Oh, my god! Couldn't be better! It's amazing what a good night's sleep'll do for a gal! In fact, got my Match.com profile up and running, finishing up the ol' e-harmony.com registration here—even got my first date tonight—I can't wait!" First time I did that to her, there was dead silence on her end for several moments before she started cautiously laughing . . . now she just tells me to shut the hell up, joke's getting old . . .

I have never felt such loneliness. . . no, I take that back. When I first met Bob, in 1992, I was living in Winona and he was in St. Paul . . . he'd come to visit me on weekends (he was the one usually doing the visiting, since he had a real job and a real car—a sweet little maroon Mitsubishi Eclipse; I was a poor college student with a full time class load, a part time job and a shitty, unreliable "car," a Pontiac T1000. I always said the "T" stood for "turbo," Bob said it stood for "turd").

Sunday night, the night he'd usually leave after spending a fun-filled blissful weekend with me (read: usually just hanging out in my tiny apartment, he'd cook for me, or take a nap while I studied, maybe we'd go for a walk or a drive out into the rolling bluff lands once in a while, for a much-needed study break . . .), was the loneliest I had ever felt. When he was gone, I'd contract the worst case of love sickness. Couldn't eat. Couldn't sleep. Skipped classes a lot. Wrote endless letters to him, sometimes two or three a day (this was before e-mail and cell phones, peeps). . . . I have a pile of letters, both from me and from Bob, to each other during that time. I can't believe he kept every letter I wrote to him, every card, every goofy little note, found them in his desk drawer, neatly lined up chronologically in a hanging file folder . . . I did the same with his (well not neatly filed away; my letters from him were stuffed in an old shoebox, inside a Rubbermaid tub. But they were chronological in order. Mostly.) His letters were beautiful—articulate, expressive, passionate, descriptive, eloquent. . . they were funny, insightful, included Latin phrases (yes, Latin, which I either had to try to figure out on my own, or wait till his next visit, to translate for me), sang of nature, of our future together . . . the most beautiful, fluid, flourished handwriting that captured Bob's essence, his passion, his being . . . I was deeply, achingly lonely then, when he'd leave me, and his letters didn't help quell the feelings; rather, they intensified the loneliness . . . heartsick, lovesick, nauseated, couldn't concentrate, I cried a lot, curled up into a little ball in bed a lot . . . but back then, I always knew that in spite of the distance, I'd only have to wait a week or two, at the most, till I saw Bob again.

I do a lot of the same stuff now, crying, curling in a ball, nauseated . . . and I also do a lot of other stuff. Walk the doggies (been going to local parks for long walks/runs with Rocco, which are wonderful, so peaceful and relaxing, one can do a lot of crying out in the woods, too. . . ), been cleaning the joint like a madwoman though you wouldn't know it by looking around; starting little projects around the place, puttering in the yard, writing endless thank-you cards from the services we had for Bob (which is a ritual in itself, to go over each card, each message, try to remember each guest at Bob's services, what they looked like, how did they know Bob, personally thanking each for having a part in his beautiful life), have had family staying with me here and there. Trying to check as many of the sickening "grown-up" things off the to-do list so I can get back to things that really matter—proper grieving and remembering Bob, recreating him in my mind, savoring memories . . . trying to figure out if I should stay in the house for a while or bust a move and get it back on the market, move back into the city, start fresh. As the days go by, Option A: Stay at Wrenwood is slowly gaining favor over Option B: Get the Hell out of Dodge. But talk to me tomorrow, when every decision I made the day before is often turned upside down and inside out.

I've even started cooking, a very little bit. But every little bit counts.

But, the harsh reality is, the week or two wait that I suffered through years ago, waiting for Bob to come back, has this time around, turned into never. . .

The week following Easter (april 25-30) . . .

I didn't post much about the last week of Bob's life, as it was an incredibly difficult, almost out-of-body experience. . . an emotionally, physically tough week and I hardly left Bob's side at any point; actually, didn't much leave his side for over three weeks, maybe just to walk the dogs is about it, when things started slowly but surely sliding . . .but I want to write about it, have to, to try to purge my mind of the images that still hold such a grip on me, infiltrates all I think about, all day, every day, just want to make more room for the good memories, the beautiful images of a beautiful person and our life together before cancer. So indulge me, ignore this, whatever. It's really just for me, to get all this out, not much more . . .

Easter was a gift, an amazing, selfless gift from Bob, to all of us, but a day like that was not to happen again . . . Bob's parents left on Sunday, with Nancy and the crew, so happy in thoughts that Bob was doing so well, had rallied for them. "Call when you want or need us up again," were their parting words . . . that night, Bob and I continued to talk and joke around, lots of laughing, sharing, talked about everything and nothing . . . right now, in that crystal clear knowledge of hindsight, I wish with all my being that I had recorded the conversation, had held onto each word in my mind with a tight grip because now, I don't remember what we talked about at all . . . as my dear friend, Lisa, says, If only life came with "Play," "Pause," "Rewind," and "Forward" buttons . . . when it was time for his nightly meds, Bob sat at the edge of his chair, counted out his pills (without resistance or questioning, which he had been doing a lot of in the past week or two, as his mind slowly succumbed to the progression of the disease), downed every one of them without any begging or cajoling on my behalf—even his liquid meds, which he despised because of the taste. With that act, as though suddenly touched by the Fairy Godmother's wand, "poof!" My Bobby was gone, replaced again, with the very, very sick version . . .

Sunday night was the antithesis of the beautiful day we'd just experienced . . . a continuous struggle for both of us, Bob resisting or criticizing nearly everything I was trying to help him with, me begging and pleading for him to take his meds, to please try to lie down and get some rest; he'd forgotten he'd taken his meds and wanted to re-take everything, then later resisted taking the last of his evening meds because he was sure he had already taken them. . . going to bed might or might not happen, because he was tired but didn't want to sleep, maybe wanted to go to the bed, maybe wanted to go to his chair, couldn't make up his mind . . . I felt so bad that I took that anger and criticism so personally, that I couldn't immediately know in my heart that it wasn't my Bob saying those things—that it was a horrific disease taking over—and respond accordingly. Instead, I cried because I wasn't doing enough, that I wasn't doing anything right, because he's so annoyed and frustrated with my lame efforts, cried because I was watching my husband being taken from me, right before my eyes . . . and I hated crying in front of him, hated adding to the layers of everything he was already dealing with, to have a despondent, helpless wife on top of all that . . . all this is part of the "process," the agitation, the confusion, restlessness, the lashing out—I knew that, from all the reading about hospice and "end of life" processes that I did, from talking to Bob's hospice nurse and doctor, but reading it and living it are two entirely different experiences. Nothing could prepare me for this deterioration of not just Bob's body, but his mind. . .

That night, before bed, Bob sat on the toilet and cried to me. . . cried because he was in so much pain, cried because he said couldn't do all of this any longer, because everything was so hard, couldn't remember anything, knew he was getting so confused but could do nothing to stop it, knew he didn't have much time . . . I can count on one had, with fingers left over, how many times Bob cried or complained in the 19 months this hell on earth has dragged on . . . all I could do was sit on the floor at his feet and hold his hands, or drop my head into his lap, wrap my arms around his waist and cry with him . . . I offered extra pain medication, offered to help him to bed, to his chair, where ever sounded most comfortable for him, which was neither . . . I don't know how long we sat like that, both of us simply crying . . .

Sunday night began the rapidly spiraling downward path. . . I've likened Bob's hospice journey to a slow airplane crash, rapidly picking up speed and barreling out of control that last week, nothing we could do would stop the inevitable crash. For the first few months in hospice, Bob cruised along, more stable than he had been all year—not to discount all the issues that came along following the horrific surgery in August—but we had very few new issues arise those first few months. But, since maybe mid March, every week or so, we'd take a sharp drop in altitude, Bob's health would hit a patch of turbulence then smooth out, though never back up to the point from which we dropped. This pattern repeated itself over and over, till Easter weekend, when the week-long nosedive ensued. . .

Bob's regular hospice nurse was supposed to be out on Tuesday after Easter, but was sick, so a replacement nurse filled in. Bob was responsive and seemingly attentive, but I could detect a lot of confusion, mixed-up information he was sharing with her. That was one of endless things that amazed me about Bob throughout this ordeal, how he could pull things together when he had to—when talking to his doctor or a nurse—no matter how bad things were for him, he had this amazing ability to make things look and sound a helluva lot better than they really were. I don't believe he was trying to play hero or trying to hide anything; it's just how Bob was in everything he did, even in acute illness— always at the top of his game, never played the victim card, even in his most messed up state, was the consummate class act . . .which often made my job all the more difficult, as his advocate . . .

I told her that he's become incredibly restless especially at night, getting up constantly, saying he needed to go to the bathroom; I'd get up every time, but often, nothing happened, so back to bed we went. . . lather, rinse, repeat numerous times, each time seemingly more difficult than the other, I could tell his strength was waning . . . around 5 a.m., he'd finally want to go out to his chair. . . but I told the nurse that didn't want to give him any more Haldol, given the events of the weekend before Easter. She recommended another drug, Thorazine, and called it in to be delivered that night.

Tuesday night, even with Thorazine, was a repeat of Monday, up and down, up and down, up and down all night long. . . at one point in the middle of the night, I heard Bob cry out my name; I leapt from the bed, ran out to the living room, found him lying on the floor in the hallway. He told me he had somehow lost his balance and fell over. More crying on my part, for not hearing him when he got up, for not being with him to prevent him from falling, for the pain he might be in now, possible injuries because of the fall, for the confusing babble that was coming from his mouth, nothing making any sense, because my Bob was falling farther and faster from me . . . I helped him scoot to the edge of the living room steps and we were able to get upright again and back into his chair . . . I don't remember at all, the details, the particulars. Just flashes of memories . . .

At some point early in the week, Bob started a serious bout of diarrhea that just wouldn't quit. Where it could possibly be coming from, I was at first baffled, as he hadn't eaten anything substantial in well over a week. Eventually, I theorized that perhaps it's his body shutting down, releasing anything that was "backed up," so to speak. Narcotics cause intense constipation, and Bob had been on pretty high doses of dilauded and methadone for quite a while (they had decreased it substantially when he was at Bethesda, but as time progressed, very likely the tumor was growing and the need for additional pain meds became necessary again). Along with the narcotics came strong doses of laxatives to help counter the narcotic effects, but from his hardened, distended stomach, it's likely the laxatives were barely working, at best. I truly felt that Bob's body was slowly giving into the inevitable . . .

Because of the diarrhea, we definitely were up nearly every hour, on the hour. I'd hear him waken and jump from my side of the bed to be close to his side as he slowly stood up and made his way to the bathroom. I thought about moving the commode to the bedside but with all we were contending with, I decided it would end up being more difficult. And, with Bob's restlessness, despite his waning strength, he still insisted on getting up and making his way to the bathroom, then perhaps the living room, over and over . . .

At some point, maybe Wednesday it was, Jim and Penny came for another few nights; my mom joined the group later in the week, Friday, perhaps? Much of the details are already a blur. Bob's good friend, Wally, also came up for a visit. I warned him about Bob's condition, that he sleeps most of the day, doesn't appear to be real cognitive, may drift in and out of lucidness—but Wally was undaunted, and came despite Bob's condition. A few of Bob's friends had been so amazing like that, so fearless of the illness, of the situation, and just wanted to be with him, to see him, say "hi," simply because of their love and friendship for Bob. I am forever grateful for Wally and Paulie . . .I love you guys, and Bob so did, too . . .

It was a tough few nights; Bob fell again, Thursday night. Thankfully Penny and Jim were with us, as this time, Bob's fall was not in a "convenient" spot and there would have been no way for me to get him up if it had just been the two of us. On Friday, Penny and Jim ran home for the night (they told me later, that throughout the year, often they had to go home, even if it was just for a night, to simply implode from the weight of it all, to have their own melt-downs, away from where Bob would see them, put themselves together again for the next round . . . I think of them so much, what all of this has been for them, seeing Bob go through all he has, from childhood, on . . . that's a whole blog entry of its own . . .

My mom stayed with us after Penny and Jim left, not wanting us to be alone any more, because of the mounting issues. She pretty much kept to herself in the basement, but like a little magic fairy, would pop up if I needed her for anything—to run an errand, grab some milk, just to sit and talk with us. . . Bob was quietly going downhill fast, needing help, needing something that I couldn't define, so afraid to be alone if something worse happened . . .

The last few nights became a nightmare. . . Bob was getting up every hour, on the hour to go to the bathroom, so weak and unsteady on his feet, but still insisting on going, even medication would not slow him down . . . pretty much every time, there was an ungodly mess in his briefs; thought again about bringing the commode right to the bedside, but quickly realized that would probably be harder to try to clean him up from that point. . . often, we're changing not only the disposable brief, but pajamas, socks and shirt, too. . . some times, I had no other choice but to help him into the shower for a total wash-down, it got so bad. That was so hard to do, given his incredibly weak, feeble state at that point, but I did not want him to be messy like that, I knew he would just hate that . . . that's one thing he'd said all along, is how he just hated to feel dirty, but in his current condition (since the surgery), all he feels is dirty . . . broke my heart into a million more little pieces, if that was possible, to hear him say that—with that simple sentence, summed up the dignity and self worth that cancer and the fucking "curative" surgery took from him, among endless other things . . . often, we had to change his dressing again, too, if the diarrhea was especially messy; often ended up soiling his dressing . . . bedding often had to be changed too . . . nights were long, neither of us getting any sleep at all . . .

Friday (April 29th), his regular hospice nurse popped in for a visit; after sitting with Bob, talking to him and observing him for a while, she pulled me aside and with tears in her eyes, told me she really felt the end was near . . . she couldn't say whether it would be a week or two or just a few days, but felt Bob was going downhill fast . . . told her about the substantial diarrhea for the past few days now; she agreed, maybe the laxatives he had been taking were finally working through his system, maybe his system was just finally letting things go . . . I asked her if there were any meds we could simply discontinue, to simplify things, given he's taking so many but maybe there are some that are kind of pointless now . . . we eliminated a few, to make things easier on Bob. . .

His sleeping patters by Friday had become way skewed; sleeping most of the day—a deep, almost unrousable sleep—and when he was awake, was incredibly confused and nonsensical (which was only for short bouts of time); he often got angry at me, when trying to give him his pain meds, saying he already took them, accusing me of trying to give him too much . . . sometimes I just gave up, to make things easier on both of us, but was fearful his pain will suddenly amp up and cause him incredible discomfort, so I tried as much as I could to convince him that I would never, ever give him more medications that what he has scheduled, begged him to please trust me . . . when he talked, he reminded me of a confused, argumentative drunk, words slurring, skewed logic that makes perfect sense to him but none at all to me . . .

Saturday night, I decided to try something different. Thorazine didn't seem to be working to address the agitation, to help Bob rest at night, so I asked if he'd be okay to try Ativan. . . it was a confusing, frustration conversation, explaining to him why I wanted to do this, but eventually, he looked at me with exasperation and said something like, "why not, what does anything I say matter any more, anyhow?" Again, heart broken into a million more little pieces, it's now powder . . . my reasoning was that ativan's supposed to be the kinder, gentler approach to the night-time agitation, just supposed to relieve the anxiety to help a patient rest, but not zonk them out like Haldol or Thorazine might. It had worked well with him in the past; maybe we both can finally get more than a half hour of sleep at a time . . .

I gave him one mg at bedtime, knowing that in the past, Ativan was a very mild anti-anxiety drug for Bob, and that I'd hate to try to convince him to take another so soon, if just a 1/2 a mg didn't work. . . almost immediately, as soon as his head hit the pillow, he fell asleep, on his back (which he normally never does), and was deep in slumber. I could barely lift both his legs onto the bed, much less get him onto his side the way he prefers, to get him into a half-comfortable position on my own, he was completely dead weight. I did the best I could without his assistance, but had to leave him on his back, and crawled into bed next to him, wrapping my arm around his waist. Not much sleep that night. . .

The next morning, Bob was in the same position, hadn't moved an inch all night, hadn't even gotten up to try to go to the bathroom. I got up and tried to rouse him, but no avail. He was still breathing, but deeply and completely unresponsive. I looked at the clock, a little before 7. My mind started racing; had the Ativan done this? What have I done? Oh my god oh my god oh my god . . . I ran to find my phone and call the hospice on-call nurse. I got a hold of her, spewed out my story; she said the Ativan would not have done this to Bob—one dose wouldn't last all night; maybe Bob was finally, completely exhausted from the several nights of up and down, up and down, she also gently reminded me the stage Bob is in, that maybe he is nearer the end than we realize . . . she said to keep an eye on him, call back if I feel I need more assistance . . .

I went back to check on him, and once again, tried to get a response from him, as I was worried that because he hadn't gotten up to go to the bathroom all night, we'll really be in for a mess this morning. This time I did get a response, but immediately regretted it. In a groggy, seemingly drug-induced stupor, Bob awoke and clumsily tried rising from the bed, but couldn't hold himself upright and flopped backward, tried to sit up again, and again flopped backward. It was then I realized he was lying in a large pool of liquidy stool. . . he struggled to get upright, while I struggled to keep him lying down, so I could try to clean him up at least somewhat, at the bedside, before we could somehow get him to the shower (which in my heart, I knew wasn't going to happen), given the sheer amount of stool on the bed . . . I sternly instructed Bob to stay in bed, ran to grab my phone and called the hospice nurse back as I ran back to the bedroom, where I found Bob still struggling to sit up. The nurse answered, and I hysterically spilled the story of what was going on; Bob is awake, trying in vain to get up, wants to get up, is covered in diarrhea and I really need someone out here to help now!

The nurse on the other end told me help wouldn't be able to get to us for at least an hour, maybe an hour and a half; the next on-call person doesn't come in till 8:30, she herself is a good hour away from me . . . I started screaming at her, "Are you kidding me?! Bob has been in hospice for FOUR MONTHS and in that time, we've never asked ANYTHING of you people even though you relentlessly bugged us with offers of all kinds of services, but now, when we REALLY need your help, you tell me it'll take a fucking HOUR???!!!" The nurse interrupted me, telling me that they don't have any staff in our area; I interrupted her, crying, "Then what the HELL are we doing in Fairview's hospice program, if you can't service us, especially in a CRISIS???!! Oh my god . . . I need help NOW and you can't give that to me???" she started to say something but I hung up, nearly hysterical.

I suddenly remembered that neighbors down the street from us, husband and wife, are both nurses, he was a hospice nurse for years, recently retired. I had talked to them a few months back and was told, "If you ever need anything, please call . . . " I need help so badly right now, please, please please help us now—I called for Mom upstairs and asked her to run down to their house and see if they're home . . . she left, I continued to try to clean Bob up, again he's fighting everything I was trying to do—I stripped his clothes off, and started wiping from the feet, up, crying and begging Bob to not fight me, to please keep still, to hold on, help is on its way, praying praying, praying that the neighbors are home and can come to help us . . . and all the while, I was really only making the mess worse, but just wanted to clean him up as much as I can, do something to try to keep him occupied, keep him from trying to grab for his walker . . .

Mom returned, said no one answered the door. I almost fainted in frustration . . . I picked up my phone, scrolled down to neighbors who live across from the nurses, handed the phone to Mom and asked her to call them, ask if they have a phone number to call the nurses. Maybe just maybe they didn't hear my mom at the door . . . she got a number, I grabbed the phone and called. A voice answere. "Sharon?" I asked frantically. "Yes," said the voice on the other end. I almost fainted with relief. Again, words tumbled from my mouth as I told her what's going on and asked if they could please help at all. She said they'll be right down. . .

Not five minutes later, Jim and Sharon, the nurse neighbors, arrived and found us in the bedroom. . . I stepped back as they immediately took over; I grabbed supplies as needed, helping as much as I can. I was in awe with their skill and expertise and the gentleness and reverence with which they helped Bob. Between the two of them, they gently, skillfully finished removing his clothes, washed him, turned him from side to side to clean him well . . . at the same time, they removed soiled bed linens, cut his soiled shirt from him (to disrupt him as little as possible), rolled the soiled blankets into a ball and expertly slid new bedding underneath Bob's limp body . . . at once, time was moving through mud and racing by. . . eventually, Bob was thoroughly cleaned, the bedding changed and he wass gently rolled onto his side, fresh blankets wrapped around him . . . he had settled down, and was sleeping soundly. An odd sense of peace has settled in the room.

In the meantime, Mom called Penny and Jim, who were on their way, as well as my sister, Gretchen, who lives nearby and can offer an extra set of strong hands to help . . . Jim and Sharon were gentle but blunt in their assessment of the situation. Bob was very near death . . . they offered me wise advice about his medications. "Pain medication and Ativan are a must at this time. You want Bob to be as comfortable as possible—keep up with his pain medications, and continue giving him Ativan at regular intervals, to keep him calm and resting. Crush the pills, mix with a tiny bit of water, and slowly pour the liquid under his tongue or inside his cheek, so he doesn't choke, it'll absorb transdermally. . ."

Eventually, nearly 10 a.m. (three hours after I first called Fairview hospice on-call), a hospice nurse arrived just as Penny and Jim pull into the driveway (who drove from 2 1/2 hours away. . . what's wrong with that picture, I don't even need to say). I told the nurse everything has been done, by our angels from down the street, that nothing more is needed . . . she gave me some additional advice about Bob's meds, and shortly after arriving, left. Jim and Sharon stayed for a while longer, and then left, saying they'd be back a little later to check on us. I was crying, so grateful for all they'd done, for all they'd shared, for coming to our rescue, for being so kind and respectful to Bob . . .

I thought I could finish this in one last entry, but clearly that isn't going to happen. . . I have to take a break from this. . . finish another time . . .

St. James, revisited . . .

The St. James service for Bob was a tough one, tougher than the one we held last week, up here, for so many reasons . . . though I kind of expected that, I still wasn't entirely prepared for just how tough the day would be . . .

St. James is where Bob grew up, went to school, fought his first valiant battle with cancer . . . it's where he forged some incredibly strong and long-lasting friendships, held fond memories of a million and one "coming of age" stories, from his Jake's Pizza days, to his golf and music development, academic accomplishments, dating triumphs and woes . . . St. James is where I met Bob, a complete and utter freakish chance meeting that never should have happened, given the million and one chain of events that had to come into play for our paths to cross that fateful August evening in 1992 . . . someday, I may share the story with you all, when I can tell it without crying uncontrollably . . .

The service was definitely different than the week's before, not something Bob would have chosen (the previous week's likely wasn't either), but Bob also understood that a church service and burial were very important rituals for his parents to have, and he was okay with all that. One of his endless, admirable traits was his respect and tolerance for everyone, as well as for their beliefs, even those he didn't necessarily agree with . . .

Anything for Mom and Dad . . . he loved his family so much, was so grateful for all they did for him, not just in the past year and a half, but throughout his entire life . . . even though Bob was such an individual, marching to his own drum beat, he always acknowledged that it was his strong and solid family that made the foundation of the man he was, right up until he died. . . Penny and Jim were very conscious of Bob and his final wishes and worked very hard to keep the service subdued and respectful of who Bob was, but at the same time, doing what they needed to do to help themselves grieve, to have their say in who Bob was and what he meant to them as a son, an immeasurable, inextricable part of their lives . . . what I came away with, from the entire experience, is that St. James was a wonderful place for Bob to have lived his formative years—so full of kind, generous, giving souls who step in and do whatever they can to assist a grieving family . . . that Bob made a lasting, memorable impression on everyone who knew him, that the pain of his passing was felt deep and wide, throughout the community . . .

The last time I was in St. James, Bob was with me, most likely Christmas of 2008. I drove past Penny and Jim's old house on the way to their new place; my eyes flooded with tears . . . I slept in the bedroom where Bob and I slept the last time we were down visiting; I didn't sleep all night . . . I walked the dogs past Bob's old high school, down the same city streets where he likely roamed with friends on a Saturday night back in his younger days; I could hardly breathe, the pit in my stomach took up so much room . . . the church where Bob's service was held was where we attended Christmas mass with his family every year. . . so many people with long-standing connections to Bob—old teachers, old friends, old neighbors, most of whom knew Bob long before I ever did. . . so many stories, so many kind words and memories shared, even more tears . . . many of my relatives who lived in the area were also there. My aunt, Caroline, who had lost her Bob many years ago, at the age of 44, same age as my Bob. As we hugged tightly, I asked her if it gets any easier with time, does it ever go away, the pain? No, she whispered in my ear. It never goes away, you just get used to it . . ."I didn't think so," I cried softly into her shoulder. . . all weekend, I was overcome with wave after wave of sickening crying jags . . .

On my way out of town, though tears were blinding my vision and I was nearly

hyperventilating from crying, I drove down to the edge of town, to the Hickory Inn, where I met Bob for the very first time, 18 years ago. I turned around in the parking lot, pulled over to the side of the road and snapped a few pictures. . . the place where history was made. . .