Neverending story . . .

Can't seem to keep up with this thing these past few days . . . Bob's still at the U, still not well, but improving every day, despite a few set-backs and issues that have developed now over the past several days . . . I started and stopped this entry more times than I can tell you, because it seemed that "one more thing" and then "one more" was layered upon layered upon Bob this week . . . Blood pressure remained high for several days, then sodium levels plummeted, liver still showed signs of the heart attack impact, then his legs started swelling to the point where they looked like enormous, hairy bloated water balloons, his mental status has ebbed and flowed—one day, I feel like the "old" Bob is back, next day, I wonder who hijacked his personality and switched it with another . . . he nearly falls asleep while standing up that I'm forever crying out, "Bobby—please lie down or you're gonna fall over!" He gets annoyed with me and my mother hen act, sometimes makes faces at me . . .

Tests upon tests have been piled on him in just the past few days, additional tests not even related to the heart attack event (at least primarily, I should say . . . residual effects) . . . medications tweaked and tampered with endlessly, chest x-ray (to check for fluid in lungs), ultrasounds on his leg and abdomen (to see if a clot is causing the immense swelling in his lower limbs), echo on his heart (to see if something there could explain Bob's massive water-logged legs), EEG on his head and a failed attempt at a neuropsych test that couldn't be completed because he kept falling asleep on the poor assistant sent up to ask him a battery of questions (the hope is that, with the test and the EEG, maybe something could be found that might explain some of the mental/behavior/memory/etc. changes when Bob suffered this most recent heart attack) . . . what else did I miss . . . as always, countless docs coming in and out, in and out, often having nothing to say except reiterations of what the previous group of docs came in and told us . . . or explaining things in a way that completely contradicts another party . . . or seems just plain and utterly useless . . .

Today, Bob's group of oncologists (whom, just this morning, I dubbed the Greek tragedy chorus. A group, 4-5 of 'em usually, saunters into his room every so often, all somber and clinical, each one spewing out verses of gloom and doom . . . I told them that maybe next time, they could try coming in with some good news for once. Even just a little tidbit. Yes, we realize you've been hit with more hard stuff today, they said to me. No, not just today, I replied. For eight months straight. . .) The results of the EEG aren't back yet; the ultrasounds found no clots, but the echo on Bob's heart showed that his tricuspid valve is not closing properly, which is causing blood to flow back up into the heart when it contracts (instead of flowing out of the heart). They tell us this is evidence of damage from the heart attack, that the right side of his heart really took a hit and became somewhat stretched out, preventing the valve from making a tight seal when it tries to close. Swelling in feet and legs is a symptom . . .We're told that it's a condition that may correct over time, and that in the meantime, they'll start Bob on Lasix, to help treat the fluid retention. . .

He's been so tired all day, that the doctors ordered that he just rest for the remainder of the day, and for his nurse to put a note on the door to let anyone know that he's not to be disturbed unless it's absolutely necessary. I swear, not an hour after they left, there was a knock at the door, PT show walked in. Bob politely said he wasn't up for anything today, that the doctor ordered R&R. PT apologized and quickly exited. Ten minutes later, a cardiologist arrives; fine, a doctor, but he basically reiterated what the oncology team already told us, nothing new, nothing remarkable or revealing. Seriously, FIVE minutes later, an OT came in while Bob was in the bathroom. I told her that Bob's extremely tired, that he wouldn't be up for anything today, doctor's orders. She said, "There wasn't anything in his charts, can I just talk to him?" I stared at her. There's a note on the door, I said. He needs his rest today. Maybe check back tomorrow. My GOD! Do people seriously NOT see the sign posted on his door, or are they simply too arrogant to heed it? I grabbed my yellow legal pad and a pen and scribbled a note in huge block letters: If your visit isn't critical, of utmost importance or pertinent to Bob's situation, DO NOT DISTURB! BY ORDERS OF HIS DOCTORS AND HIS VERY ANNOYED WIFE! THANK YOU! We didn't see anyone else, not even his nurse (unless he called her) for the rest of the day . . .

I tried to be as quiet as I could, turned out all the lights in his room and tried to let him sleep . . . he did finally succumb to zzzzzz's, and slept at least 15-20 minutes here and there . . . when he woke from one of his naps, he wanted to take a walk. I suggested getting outside, as it looked pleasant enough. We made our way down to the main floor and out into the courtyard that Bob can see from his room. We found a picnic table to sit at, and before long, Bob was sawin' logs, head propped up by both hands, elbows on the table . . . my sister, Jill, and her daughter, Amelia, called to say they were coming by for a visit and that they'll be bringing dinner. About 1/2 hour later, they arrived with a bag of grub from Noodles and Co. Bob and I split a chicken and pesto dish. Jill and Miss A walked us back up to Bob's room on 7D, hung around to chit-chat for a while then took off.

I finally left the U at around 8 pm again tonight . . . came home to a pristine house, thanks to P&J, who must have cleaned up a storm before I left. . . too tired (and too late) to walk the doggies . . . we're looking at a Sunday discharge, at Bob's request (actually, decree), if all goes well. I can't tell you how happy I'll be to have him home again . . .

Diarrhea of the keyboard . . .

I just can't seem to stop posting today . . . sorry, my fingers have the runs today, and I gotta write some of this down before I lose it . . . in the midst of all the shit, the rotten, rotten shit that's been flung in our direction for the past seven months and counting, if you want to get technical, but particularly of late, if you want to get specific, I just have to share yet another tidbit (yeah, yeah, yeah . . . I can hear the collective "you all's" out there going, Tidbit, Jen? Really?!? NONE of your blogs have been so-called "tidbits . . .") . . . there is something, just something in Bob's voice tonight that, even in it's weakened and still tinged-with-confusion state, is emitting a sense of strength, of determination, of clarity, that I haven't heard from him in a very long time . . . so hard to explain, especially given the events of the past week and a half, and how he was even just last night, which seems light years away from how I found him today, especially given the care conference and the proverbial ton of bricks that was dumped upon us with that, which will take some time to sort through, to process, to come to terms with . . .

Penny and Jim arrived this morning to be here at the care conference with us, stayed the afternoon and then went to pick up dinner for us from Applebee's before they took off for our house, to let the dogs out, feed 'em, hopefully get to bed early. Nearly the entire day, Bob has seemed so coherent, lucid and was having a great time joking with his nurses and lab techs who come in to draw blood. (Especially this evening's nurse, Leigh. Bob wears these adhesive, topical analgesic patches over the main area of pain on the backside of his leg, just below his butt. Any nurse who comes in and, barely after the introduction, says, "Okay, Bob, drop your drawers so I can slap this patch on your bootie!" is a-okay in my book. Hell, what am I saying? A-okay in his book.)

I was just in awe when he slowly got up from his bed and shuffled around the curtain to greet the new patient who had just been wheeled into the room, another cardiac patient who sounds like he's not in the best shape right now, but very graciously accepted Bob's introduction with a big smile). We picked on each other just like old times, we went on a few walks (he's back to walking with just his cane, and right now has nothing attached to the IV lines in his arms, so he walks unencumbered). We actually had conversations in which he was engaged, responsive, interested. Today, despite all the past week's events, was a very good day.

But, don't get me wrong. It's not like I'm sitting here all rosey-eyed and happy, thinking thoughts of puppies and flowers, and how ain't life just grand? 'Cuz that ain't it at all. I'm still holding my breath, still reeling from the last round of events of the past week, still wondering if, when, how this will all end. Still am terrified of the form in which the next crisis will arrive. . . still cried my eyes out at the care conference and again on my way home from the hospital tonight, and know that no matter what path we decide for him, Bob's life will never, ever be the same again. I mean ever. But, in spite, despite it all, I feel Bob is back. I hear it in his voice.

Roller coaster going back up, up, up . . .

When I got to the U this morning, Bob was sitting up in a chair and a woman was by his side. I introduced myself, she said she was from OT, and that she and Bob had just walked to the bathroom, got washed up and were now just going over a few things he can do to conserve energy, not wear himself out. I just stood and stared at him. Was this the same person I left last night? WTF?!? He looked at me and said, "I wasn't quite expecting you yet . . . we're not quite done."

I said I can come back; I'd brought some magazines to leave in the sitting areas (we've been finding ancient issues here and there—on 7D, Penny found a mag from 1998 . . . ) I could go do that while they finished up. I ran into Caryl, the nursing care coordinator who told me Bob's care conference is going to be a little earlier than expected, and that she'd come let us know where it would be as soon as she found an available room. I called Penny and Jim, who were on the road, just to let them know, and then went back into Bob's room and took a seat on the window ledge.

The OT said she was just going over some things Bob can do to conserve energy. She asked him if she knew what she meant by that. He looked at her with a blank look at said, "What, do you mean insulation, that kind of thing?" Oh god, he's still confused. The OT and I both paused, looking at him with concern. He looked at both of us, gave a little snort and rolled his eyes. "Yes, I know what you mean." She went over the things Bob can do to keep his energy reserves up to capacity, so he doesn't wear himself out. She then asked him if he had seen any doctors today, if he had any updates on his status. He kind of laughed, said he's seen many doctors already. I asked if he heard anything about the MRI done yesterday. "Yes," he said, looking at his hands in his lap. "It was not good news." My heart dropped and I almost didn't want to ask him to explain, but had to. He took a deep breath. "They told me my brain was completely normal. Can you believe that? Normal. All this time, I thought it was exceptional. . ."

Care conference is to converge in about 1/2 hour. Gotta go over our notes. More later.

One step forward, two back . . .

I should know better, by now, than to get too optimistic on this insanity-inducing roller coaster ride, as no sooner had I post the last blog, than Bob segued from one set of complications to a whole set of new ones . . . I started noticing the subtle changes early Saturday evening, before I left for the night. He seemed especially edgy, uncomfortable, restless. He hadn't eaten much all day, and even though he wasn't hallucinating at all, he was definitely preoccupied with whatever physical ailments were now taking over . . . hard part is, he couldn't articulate exactly what was going on. When I or a nurse or doc asked, he would try so hard to explain, but unable to pull out the words, which lead to exasperation and frustration with us. He'd look at me and say, "Don't you know?" I could only answer, no, I'm sorry, Bob. I don't . . .

Then, he began complaining of pain when he tried to take deep breaths . . . his nurse checked all his vitals, listened to his heart and lungs; everything looked strong and sounded clear to her . . . he had taken several walks around the unit throughout the day, and his nurse thought that perhaps he had simply taken on too much on for the day, some exhaustion along with a little anxiety . . . anything I said to him was met with a labored effort to answer my questions, followed by a look that basically told me, "Please, just shut the hell up, Jen . . ." and silence. Finally, he said to me, "I think you should just go now." I chalked it up to exhaustion from a busy day, but still mentioned the changes to his nurse to keep a close eye on him . . .

Sunday, I decided to give Bob a break and didn't go in to see him till the afternoon. I know that having us family around constantly can make Bob more anxious and sometimes even agitated, so I thought having a half day to just rest without feeling like having to "entertain" would be welcomed. I walked the dogs in the a.m., did some laundry, hung it out to dry, then went to my sister, Gretchen's, bridal shower for a few hours before heading over to the hospital. I had called him several times throughout the day, but no answer. When I arrived, Bob appeared to be sleeping, so I tiptoed in as quietly as I could, but a weak voice startled me. "You haven't been here in a very long time . . ."

I asked if he had had a chance to get washed up lately; he didn't remember, so I filled a wash basin with warm water and liquid soap and proceeded to give him a bedside cleaning, from the toes up. As I slowly washed his feet, his legs, his arms, he mumbled, "That feels really good . . ." Yes, the healing power of touch . . . a hospital isn't exactly known for its healing touch practices, unfortunately. Rather, it's mostly poking, prodding, pulling, pushing . . . He was like a helpless baby, I lifted each limb as I washed him, turned him on his side to cleanse his back and stomach. I tried to wash him as gently but thoroughly as I could, as a haphazard pattern of purple and blue bruises in various sizes and shapes dotted his entire body body. When I was done, I helped him into a fresh gown and underwear. He lay his head back onto the pillow and curled up to sleep. Note to self: do this more often for him. . .

Our conversations were still very one-sided, me asking lots of questions, about his day, if he ate, if he got on a walk, if he's slept at all, and more very strained, incomplete answers. I talked to a team of doctors who were on staff for the weekend; they said the lethargy and confusion may still be the effects of the heart attack hanging around. I said I think he's worse off than the day before and it's beginning to disturb me and really bother the hell out of Bob, who seems annoyed than no one can figure out what he's trying to tell us . . .

Today, Monday, I'm even more alarmed with his confused state; his short-term memory's shot, he's extremely lethargic yet highly agitated when anyone asks too many questions or seem too doting or hovering . . . he can't form a coherent train of thought to save his life, but knows this, which only adds to his agitation and frustration . . . he's been refusing medications, saying he just wants a break from all of them right now, feels they're responsible for how horrible he feels right now . . . his nurse has been able to persuade him to take at least his methadone and heart meds, as they are the most important ones, and, because methadone and Dilauded are narcotics, he can't just quit them; he must be weaned very carefully, under close doc supervision.

A few days ago, we were told the confusion likely was because his liver function needs to stabilize and/or because of withdrawal effects from not having his pain meds for a day and a half and that it'll take time for his mind to recover. . . today, the oncology team tells me that his sodium levels have dropped dramatically, and that may be the likely cause of this confusion. I was with him for a few hours this morning, talked to the oncology team for a while. They said they put in an order for renal (kidney) docs to pay Bob a visit and give their assessment on the situation, but that wouldn't happen till later in the afternoon. I tell them, as I told his nurse this morning, I think Bob is slipping, that he's much worse off today than he was yesterday; he lies in bed, breathing quite labored, staring off vacantly most of the time . . . it takes a huge effort on his part to answer any question I ask, and even then, he often can't finish his train of thought. I can see the frustration in his eyes, in the way he slowly lifts his hands, grasping, searching for words that don't come, then drops them back onto the bed in frustration. I ask how long someone can be on these narcotics before some kind of damage is done; I'm told that long-term narcotic use typically doesn't affect the body adveresely

Since there are no more scheduled doc visits until the afternoon, I leave the U to go home for a spell, take the dogs on a walk, just to peel myself away from hovering over Bob and let him try to rest. When I return, I'm told that an MRI on Bob's head is scheduled for the afternoon, to rule out any possible cause of the confusion going on up there; I'm told not to worry (seriously?), that the doctors suspect the sodium level drop more than anything . . .

A member of the OT team is in Bob's room when I enter; he's barely responsive to her questions. When I introduce myself, she said she's glad I'm here because she needs to make an assessment on whether or not Bob should be discharged, and even though he was able to answer all of her basic cognitive questions (month, year, count to 20 forward and back, that kind of simple stuff), she wanted my input about his condition. According to PT and Cardiac Rehab (who, as far as I know, saw him a few days ago), felt he was doing well enough to go home, or possibly to Transitional Care again for a stint. I say, "He's much worse today than he was over the weekend. No way is he going anywhere like this, not even to transitional care. He is very, very sick, and I feel he's getting progressively worse as the days go on, not better. I'm absolutely against discharging him to anywhere right now, until he's a lot better than this." The OT agrees with me, but says the PT and CR made their assessments over the weekend when they worked with him. I told her he's even worse off now than he was last night; I took him on a short walk last night, but there's no way I'd take him or allow him to be taken out at this point. She takes all of my concerns to heart and says she'll make her recommendations based on what I told her, and to maybe have PT and cardiac rehab reevaluate . . .

The renal team arrives shortly before Bob's taken away for the MRI; they tell me their conclusion is that the cause for his alarming confusion is due to the large doses of narcotics he's on, coupled with the pain itself, that both events cause the brain to excrete more hormones that affect the sodium levels . . . hmmm. . . contradictory to what the oncologists just told me in the morning, but they're the kidney experts . . .

I'm also met by the nurse care coordinator who tells me that she's my "go-to" person for any questions regarding Bob's time on 6B—if I need to get a hold of a particular doctor, or if I don't know who to get a hold of, if I'm wondering who'se in charge, she's my woman to sort these things out . . .

Tomorrow is the patient care conference, with every department working with Bob—oncology, cardiology, orthopedic surgery, colorectal surgery . . . I am so hoping to learn more than I do now, regarding what's being discussed about Bob's situation, and where we go from here. Try as I might, the only question I can really come up with for these people is, "Can you help Bob?"

Every day, little improvements . . .

I'm sitting at Bob's bedside as he tries to settle down for an afternoon nap. He just had lunch—cheeseburger, fries, chocolate shake . . . he ate maybe half of his lunch, if that, before pushing it aside to lie down. So much has happened this past week, the last blog entry, epic as it was, didn't even begin to cover everything that has transpired . . . I was re-reading it this morning and though of a million other things that I could have, should have written about, and some things that maybe I shouldn't have . . . then, I think, this is the place for the good, the bad and the ugly, as this is our life, right now . . .

I made the decision months ago, to share this journey, to put it out there for all the world to see, an effort to keep friends and family connected to Bob and what he's going through, as he's been so disconnected, severed, really, from the life he used to be a part of . . . so many times, I've regretted this along the way, have wanted to stop . . . it's gone on far too long, with no end in sight. Little updates are impossible, for with Bob's situation, there aren't ever just "little" things to update; it's been major crisis after crisis . . . there's just no way to sanitize this story, clean it up, downplay . . . sometimes I try, to keep from sounding overly dramatic or to spare everyone the ugly details, but to do that falsifies, minimizes the very serious nature of Bob's situation and also minimizes the amazing, miraculous rebounds he continues to make in the face of the intense battle he's fighting. Yet these words are so inadequate, fall so short . . . as a family friend put it, Bob's been through war, man, he's been through a war . . . reminds me of a quote I'd included in a blog entry an eternity ago: "If you're going through hell, keep going . . ." There's no such thing as a quick update with Bob's situation. Had I known that seven months ago, I would never have started this online journal. . .

Saturdays aren't quite as busy as weekdays here on 6B, but still lots of activity in Bob's room today. He's had a round of cardiac rehab this morning; everyone is so surprised that, even in his weakened and still somewhat muddled mental state, he's so spry and practically leaps to his feet from a seemingly catatonic state, to go on a walk around the unit. Several teams of doctors, mostly oncologists at this point, since his care has been transferred to their care, have stopped in to see how he's doing, give us updates on what they're learning about his recovery, tidbits on what developments are brewing for future treatment plans. We ran into a team of oncologists on his walk this a.m., they were so encouraged with how he looks and how well he was moving about the unit.

Amazingly, Bob is almost 100% back with us mentally—very little hallucinations or extreme agitation are evident today (just a little delirium now and then, when he wakes from a nap, but he catches himself in the middle of a hallucination, with a weak laugh, saying, "Oh nothing . . . never mind . . ."). This is remarkable, considering how mentally whacked-out he's been over the past few days. I was told yesterday that though the liver is quite resilient, it may take up to two weeks to recover from the damage done by the heart attack, and can take at least that long for Bob to regain full mental capacity. Today, we're told his liver is recovering astoundingly well, which possibly means the medications that weren't being metabolized are now being processed, getting out of his system. He's still restless, anxious and very tired, but fights sleeping, despite everyone's coaxing, encouraging, cajoling.

The trade-off to a clearer mind means that his pain has returned, dammit. . . just one more instance out of a million that shows how very precarious and tenuous his condition is. Such a delicate balancing act, that can be tipped into chaos with the flutter of a butterfly wing . . . Right now, he's afraid to take too many pills, as in his mind, that's what caused the brain fog and he doesn't want that to return. His nurses have been able to convince him to take small amounts of Dilauded here and there, which is helping to bring the pain down to a tolerable level, but not back to that blissful level 1 to 2 that he briefly enjoyed over the past few days. Actually, in his mental fog, he couldn't even really enjoy that reprieve from his pain . . .

So, today, we're told that the bacterial infection in his blood is clearing, though he'll be on a

round of antibiotics for at least another week or so. His liver function is rebounding, his heart is, once again, recovering very well. He had some major swelling in his left arm, from the elbow down—looked like Popey's arm—so he had an ultrasound done to see if a blood clot was causing the swelling. That came back clear, so he's probably just retaining fluids in an odd way (he did that back during his last heart attack, but it was in his right foot then). His right foot is fat and puffy, too, but both look better than they did yesterday, so hopefully it'll continue to dissipate over time.

Sounds like Bob'll be in the hospital at least till Tuesday; there's been talk about moving him up to 7D at some point, to the oncology unit he knows all too well, but we haven't had any specifics about that yet. His nurse removed the annoying Foley catheter (the one inserted in the bladder to drain urine), so he can once again urinate unencumbered, though he did say it was kind of nice to simply pee whenever the mood struck, without ever having to leave the bed . . .

Tuesday is another big day. We have a patient care conference scheduled with all the players in Bob's care: the surgeons, the cardiologists, oncologists, and we, meaning me, Bob's parents and Bob, if he's up for it, to meet and discuss the game plan moving forward. My homework for the weekend is to come up with all the questions I possibly can . . .

seconds to minutes, minutes to hours, hours to days . . .

Bob just got out of ICU this morning and is now recovering in intermediate care (a step between ICU and a "regular" unit), but is still very sick, and is a conundrum to the medical community. . . So many things are going on with him, within him, right now . . . we're hearing so much, learning so much, unlearning even more . . . talking to so many people . . . it's gonna take some time and effort for me to sort through all this . . . with this most recent heart attack, the blood clot that blocked his right main artery (again) was successfully removed so a stent wasn't necessary (nor was it possible), but the heart attack was as serious as the others, more serious, in fact, due to damage done to his heart and other events that hadn't occurred with the other MIs . . . curious of coincidences, Bob's roommate on 6B is a guy in his late 40s, also a Hodgkin's survivor (had it when he was 15) and is now being treated for heart problems himself, faulty valves, if I heard correctly (through the oh-so-not-private curtains separating patients) . . . Bob's parents had a chance to talk to his wife briefly in the hallway; maybe today, I'll have time to talk to them, too. . .

As I've said before, I've been keeping this blog more for Bob and me, than anything, to write all this down, to give me time to sit and to process everything, sort through the events of the days, try to remember what happened, in what order, with whom we spoke, with whom we're waiting to speak . . . and to give Bob a written account of what's been going on, because often he's either unconscious or groggy, or for the very simple reason that all this shit is happening to him and he has no time, energy, ability, leisure or privilege to talk, write, discuss, much less remember much of anything except that he's very, very sick . . . this is my effort to try to make a neat, tidy little story out of something that isn't neat or tidy in the least.

We're not sure yet how long Bob'll be in the hospital, but he's had more doctors come in and out of his room over the past few days than I've ever seen, something I didn't think that was possible, given all he's been through in the past months. One of the big reasons I've not been able to update the blog is that being in the hospital and talking to teams of doctors as proxy for Bob, has become my full time job. I need to be with him because right now, he's very confused, agitated, hallucinating, all kinds of stuff going on that renders him useless, really, to be able to talk to doctors. . . if you want the quick, down-n-dirty story, right now, without any extras, here it is: they have to let his heart heal before anything else can be done at this point. We're constantly being reassured that there are more people on Bob's case than we'll ever know, studying his situation, trying to come up with the best solution, based on all the crazy, ever-changing variables . . .long and short of it, he's an incredibly complicated patient, with layers upon layers of medical issues affecting him, many different departments now involved, each taking equal precedence, if that's possible. He's a cardiac patient, an oncology patient, a surgery patient, a colorectal patient, an infectious disease patient (he contracted a blood infection that's currently being treated with two heavy-duty antibiotics), and I've probably left a few out . . . if you want all the gory details of the latest development and of Bob's miraculous, yet tenuous recovery, please read on . . .

A multitude of events preceded and have been affected by this latest setback, so please bear with me once again while I try to retrace our last few days . . . Bob's pain was being tolerably managed with the PCA at home the week before his pending surgery, so he wasn't quite the zombie he had been when they first sent him home after his last hospitalization. We were biding time until the big day, The Day of Reckoning, as we had started calling the surgery day. Having survived a pleasantly uneventful Memorial Day weekend with my family (in which Bob was able to partake more than I expected, though he was kind of groggy and had to lie down often throughout the day), brought us to Monday, May 31.

On Monday, at 4 p.m., Bob start the bowl prep, which is done to clear the bowls of all matter prior to surgery. Easier said than done, as it consists of chugging a gallon (yes, a gallon, and yes, basically chugging: one 8 oz glass every 5-10 minutes is the recommended rate of consumption) of a solution of water and a powerful powder laxative with electrolytes, to clear the bowls squeaky clean. Supposedly, it's to start working within the hour or so of beginning the chugfest . . .

We calculate this to be 128 ounces, or sixteen 8 oz glasses of the stuff over the course of an hour and a half to two hours. Holy shit, pun intended . . . Bob starts downing the elixir as scheduled, I cheer him on, even foolishly telling him I'll down a glass of water for his every glass of crud, as an act of solidarity. In true Bob fashion, he looks directly at me and says, "That'd be stupid. Why would you want to do that?" Gotta admit, I'm secretly glad he didn't enthusiastically take me up on that offer . . .

It isn't long before he starts feeling bloated, nauseous and water-logged, but nothing else is happening. I mean nothing. His 1 glass every 5 minutes strategy soon gives way to one every 10 minutes, then one every 15 or 20, punctuated with lying down in between, to rest. An hour passes, then two, the expression on Bob's face becomes more and more pained . . . about 1/2 way through, we get a call from the on-call colorectal surgeon, who is just checking in to see if we have any questions before the surgery. I ask her about the bowl prep, how long exactly should it take before things started moving? She says everyone's different; some start experiencing movements right away, some take longer, and Bob may take even longer being that all the pain meds he's on tend to make him more constipated to begin with. "Be patient but be near a bathroom, because when it starts working, it starts working," she tells me before hanging up.

Bob gets to the point where he's downed nearly the entire jug, maybe just a glass or three left when he just can't do any more and goes to lie down again. Another hour passes. In the meantime, I walk the dogs, mow the lawn, do a few other things while popping in frequently to check on him. It's well after 8 p.m, four hours after starting the process, when I come back inside from weed whapping and am nearly bowled over by a horrific stench wafting through the house. Then I hear Bob calling my name from the bathroom. Finally, that crap's working, I think as I head in the direction of his voice. I am not prepared in the least for what I find in the bathroom. To my absolute horror, Bob is lying on the floor, in a pool of liquid shit that nearly covers the entire bathroom floor . . . he's weak and unable to stand up, with more liquid literally pouring out of him. I have to admit, this is not one of my shining moments as I completely and utterly panic, freak, lose it, whatever you want to call it and start crying and gagging at the same time. Oh my god, oh my god, oh my god . . . are you hurt? Are you okay? What happened—did you pass out? More than once, I have to leave the bathroom, eyes tearing up in my efforts not to vomit all over, wondering how the hell am I going to get him off the floor, where will I put him, will that shit ever stop coming out of him? Oh my god, oh my god, oh my god . . . I can't stop crying and am wondering how the hell I'm ever going to do, to help him . . .

I see his PCA unit lying dangerously close to the mess and immediately think about contaminating the IV line or his insertion site. I see that Bob is struggling to stand up on his own, but is slipping on the mess on the floor. Wimp-girl-turned-bootcamp-sergeant, I find a bunch of rags and dog-towels, throw them over the mess on the floor and start yelling at Bob to try to stand up, step on the towels, to get out of the filth and back onto the toilet, so I can help get his soiled clothes off, clean him and the bathroom up . . . his voice is weak and barely audible, my fear is that he's going to pass out on me. . . keep him awake, keep him alert, I tell myself . . . I repeat my demands over and over, Bob, listen to me! You have to get up out of this mess, I need to clean you up, please, just get back on the toilet, you can't lie in this shit, you're covered in it, I need you to get up onto the toilet, please . . .

If I can just get him back on the toilet, I think, he can continue ejecting the foul stuff that seems to have no end, I can hold him up till it subsides, then I can clean up around him, and help him into the shower . . . with every fiber of his being, he pulls himself up onto the toilet as I run to grab the phone, shouting over my shoulder, hold on, please don't fall, please don't fall . . . I quickly call the colorectal on-call surgeon back and when I reach her, words tumble out of my mouth frantically, "my god, Bob just collapsed in the bathroom, shit is everywhere, he's covered in it, he's weak, confused, my god, is this normal for this bowl prep to happen like this? This is insane!" The colorectal doc starts explaining the process of the bowl prep in great detail, that no, it's not normal, but that everyone responds differently . . . but Bob is telling me he can't sit any more, he needs to lie down, can he please lie down on the bed? I start crying again, I tell the doc I'll call her back, I need to help Bob lie down. You can't lie on the bed like this, Bob, you just can't . . . let me get more towels . . .

I lay more old towels all over the bathroom floor, slowly help him down again and ask him if he wants me to call 911. He nods his head yes. I dial 911, get a dispatcher and spew the story to her. She said she'll send an ambulance and that she'll stay on the phone with me till they arrive, as I talk to her, I struggle to get Bob's clothes off. I get his sweats, underwear, socks and shoes . . . can't get his shirt because of the PICC/PCA that I'd need to disconnect and with all the filth around us, I decide it's too risky and leave the turtleneck on him. Bob lies on the floor, nearly motionless, except for foul liquid still pouring from his body. As before, it's nearly 20 minutes before the paramedics finally arrive, they ask Bob several questions: Did he black out? Did he hit his head? any chest pain? Nausea? tightness in the chest? is it hard to breathe? With them, Bob is seemingly coherent, lucid, almost conversational in his responses, all to which he says, "No."

The paramedics decide Bob's probably extremely dehydrated, given the volume of fluid he's rapidly lost, that it's best he go directly to the hospital for fluids and to be monitored. I'm comforted by their words, and by Bob's seemingly calm reaction to the paramedics. As they wrap him in blankets, I tell them to take him to the U, being he's scheduled for surgery in the morning, that I'll stay back to clean up the bathroom and be down there as soon as I can. It takes me nearly an hour to clean, scour, disinfect the bathroom, throw some of the soiled items in the laundry to try to salvage them, others right into the trash, then shower myself and hop in the car down to the U. I've got my pj's on, basically, as I'm simply expecting to go to the U, find Bob already settled in a room with an IV, kiss him goodnight and see you in the morning. I call Penny and Jim, wakening them, and tell them what's going on. "Nothing to worry about, just wanted to let you know," I say before saying goodnight and hang up.

I arrive at the ER around 11 pm. I hear someone say, "There she is, the little redhead Bob's talking about." I laugh, and say, "Oh there he goes, bragging about me again," or something equally inane. I'm lead to a room in the ER and almost as soon as I enter, I'm told Bob is having a heart attack, that they're getting ready to take him to the cath lab and they need my permission to resuscitate if needed. The room starts swirling in slow-motion, this can't be happening again, not again, please no, not again . . . I give my consent, "Do whatever you need to do, yes! My god! Yes!" Dr. B., the cardiologist who put the stents in Bob's heart back in March, flies into the ER room. He looks at me, then at Bob and says, "Oh my god, you again. We gotta quit meeting like this. Okay everyone, let's go." Bob is whisked away, I'm lead to an abandoned waiting room down the hall from the cath lab, a waiting room we've been in many times before, for CT scans, MRIs, other procedures, during normal, busy hospital hours, now it's ridiculously, blindingly bright but empty. . . I take a deep breath and call Penny and Jim again. When I tell them the news, Penny cries into the phone, calls for Jim, who picks up another phone, I tell him the same thing. "We'll be right there. We're leaving right now," they say and we hang up.

Now who do I call? My mom, who's staying up in Mpls. with her sister, Pat, for the extended holiday weekend. When I tell her what's happening, she starts crying, says she'll be right down to the hospital, to be with me. "You can't be alone. You shouldn't be alone. I'm on my way." I sit alone, periodically visited by an ER or cardiac team member who fills me in with bits and pieces about what's going on, that Bob arrived at the ER, his blood pressure was very low, an EKG Within the hour, she and my sister, Jill, arrive.

Tuesday morning, 12 a.m. . . .We sit, watching goldfish in the aquarium in front of us, waiting, waiting, waiting . . . finally, Dr. B appears again, tells us that they've successfully opened the blocked artery, that Bob's once again, has recovered remarkably, that they're taking him up to cardiac ICU, where he'll be monitored for the next several days. He said they removed the clot without doing another stent; in fact, he said he couldn't do another stent because it was the old stent from three years ago that clotted up again, and they can't put a stent within a stent . . . instead, they put a balloon into the artery to open it up and sucked out the clot, essentially . . . as Dr. B leads us up to cardiac ICU, he tells us that he saw in Bob's records that he was taken off aspirin prior to his surgery; Dr. B had given specific orders to stop the Plavix but keep Bob on aspirin, given his propensity to clot . . . he sounds more than irritated that his orders were bypassed and turns to tell me that from here on out, if surgery is rescheduled, only he or God is allowed to change that order. He goes on to explain that because of Bob's Hodgkin's disease and because of this current cancer, Bob's blood is hyper-coagulative, meaning it has a high propensity to clot. It's something they can't predict or control, but being on blood thinners reduces the risk, and in his opinion, believes now, that Bob can never go off blood thinners, given this enormous, life-threatening risk.

The rest of the evening is a blur . . . Bob is in a room with no windows, but is coherent and lucid, knows what happened . . . eventually, Penny and Jim arrive, around 2:30 a.m. . . my mom and Jill are still with me . . . I go into Bob's room every 10 minutes or so, it seems . . . his blood pressure is dangerously low, they monitor that closely, along with all other vitals . . .we're told his liver has suffered damage, albiet temporary damage that will take time to recover . . . at one point, I stroke his hair and softly tell him to please stop doing this to me; his response is, "Please stop yelling at me, then . . ." the nurses nearby laugh but I look at him and ask what he means by that. He tells me he thought I was yelling at him when the bathroom episode occurred, that he thought I thought he was being a baby, not trying hard enough to help himself . . . that he knew something else was wrong but he was afraid to tell me because I was already mad at him. . . . I stared at him for I don't know how long before I shook my head. No, no, no, I wasn't mad at you, and I'm sorry if you thought that. . . my god, I was horrified, mortified, terrified and didn't know what to do when I saw you on the floor, in the middle of that mess. . . I wanted to help you but knew I couldn't lift your dead weight by myself, and I needed you to listen to me, to help me . . .don't ever do that to me again, not tell me if you know something else is going on. My god . . . you could have died because of that . . .

At some point, I go back into the waiting room and fall asleep in fits and starts, punctuated with more trips to Bob's room. Morning light starts to brighten black windows, eventually flooding the waiting room with sunlight. At some point, I'm told that the surgeons and cardiology team will be meeting in Bob's room to discuss what happened and how to proceed . . . I ask Penny and Jim to join us, as we're all at a loss with what has happened in the past 24 hours. I told them I need them to speak up for Bob's sake, that I've done so much talking, pleading, begging and crying to so many people, that maybe the docs need to hear the concerns from other family members, from Bob's mom and dad, now. I can't do it any more, at least right now. and the more voices, the better. . .

At some point, we all end up in Bob's room, Dr. O, his orthopedic surgeon, Dr. M, the colorectal surgeon, still in scrubs likely in preparation for Bob's surgery, a whole team of cardiologists, interns, Penny and Jim, surrounding Bob's bed. At this point, Bob is completely coherent, lucid, comprehends everything going on around him. The lead cardiologist (not Dr. B) beings by explaining that Bob came into the ER the night before in the throes of a massive heart attack, that he is essentially a medical conundrum, that surgery must be postponed for at least another six weeks, that there's a small chance that surgery may not ever happen, given the issues surrounding Bob's situation.

I question the reasoning for ceasing the aspirin, given Dr. B's strong recommendation; we're told that due to the very lengthy, highly vascular nature of Bob's surgery, the surgeons decided, with cardiology input, that the aspirin be stopped. The debate is, essentially: keep him on aspirin and run the very real risk of bleeding to death during surgery vs. stopping the aspirin and running the risk of a deadly heart attack . . . we're told that surgery is really the only curative solution for the tumor, but given the major risks faced right now, they're also exploring other options in treating the tumor, should surgery be impossible, such as freezing the tumor, treating the nerves with other therapies than just drugs (e.g. epidural-type nerve blocks) . . . my head is spinning, I keep looking at Bob, keep having flashbacks to the night before, with him in the bathroom, helpless, terrified, humiliated, knowing something was wrong, very wrong . . . my mind is mud, no more questions can form . . .

Jim takes center stage and delivers an impassioned, Oscar-worthy speech to the doctors, that we, as family, are frustrated and confused with the seemingly lack of communication between the parties involved with Bob's care, that we're at a loss for what to do next, and that Bob's life has been on hold for months, with no end in sight . . . now with this blow, we have nothing to hold onto, and are losing faith in the system that is treating Bob. Doc M, the colorectal doc steps up and tells us that we have to realize that Bob's situation is so complicated and that there are so many layers to be addressed, and no easy way to proceed . . . that we need to trust that they have Bob's best interest at heart and are doing all they can and will continue to do all they can to figure out what the best course of action is for Bob, but that it can't happen overnight, and that we wouldn't want it to happen overnight, given the complexities of the situation. That right now, we need to let Bob's heart heal before anything else can be done.

Doc O, the orthopedic oncology surgeon, takes his turn with his piece. He explained the nature of this type of tumor, that the surgery involved is lengthy, complicated and involves so many blood vessels that to operate with aspirin is too risky for his comfort level to have a successful, crisis-free surgery. That there may be other ways to treat the tumor that they're exploring . . . that they'll continue to monitor the tumor for signs of spreading, and also look into other chemotherapy or other therapy means to keep the tumor at bay and to possibly treat the pain with other methods besides heavy-duty narcotics. . .

After the nearly hour-long conference, we're basically left with the fact that right now, Bob's heart and all that has been affected by the heart attack are first and foremost the center of everyone's attention. Surgery absolutely cannot happen for at least another month, if at all. That in the meantime, all the brains behind Bob's treatment will be meeting at length to discuss the options . . .

Over the course of the next few days, I meet with more and more doctors who give me more and more information than I can possibly process. I decide to pull out all stops. I cry at every meeting. I tell each and every doctor that this has gone on for seven months and counting. Seven months that Bob has lived in excruciating pain, with no end in sight. That with each light at the end of the tunnel, some catastrophic event coms along, blindsides everyone and snuffs out the light. That at this point, no one has given us any inkling of hope, nothing to grasp and hold onto, that we don't know how much longer this can go on, that Bob can go on . . .that I've run out of questions, that I can't even begin to comprehend how this latest event could possibly have happened, that from here on out, they need to be telling me everything they know, instead of me grasping for answers to information that I can't even begin to comprehend . . .

I tell them that Bob's terrified to fall asleep, he told me the other night, in tears. He's anxious, restless, agitated. . . that the one deep breath he might allow himself to take will be his last. That he doesn't think he can go on any longer . . . that the lucidity he exhibited on Tuesday has been replaced with confusion, hallucinations, agitation . . . we're told that the hallucinations could be one of a number of things: that he could be experiencing withdrawals from the pain meds because he was on such a high dosage up until the heart attack, then had to be discontinued for at least a day and a half because narcotics tend to drop blood pressure . . . that, or because his liver was damaged from the heart attack (the heart ejected a high level of a particular chemical that flooded Bobs liver and will take time to recover from), it has to metabolize the chemical before it can do anything else; therefore, all the pain and other meds Bob was on have built up in his system and will take several days to be metabolized . . .

We have met with social workers, nurse care coordinators, more doctors, specialists . . . one night this week, I thought that maybe, at some point in the near future, being we have several weeks to kill, I want to be proactive with the time and do as much as we can to examine Bob's situation. I mentioned to the Palliative Care social worker that I'm considering asking for a referral to the Mayo clinic, not because I feel the U isn't giving Bob the best care; rather, because I want as many specialists as I can get to look at him, give their assessment, insights, opinions on his situation. For lack of a better phrase (because I truly do not blame the Mayo), they "caused" all of this to happen to Bob, given his history of radiation treatment back in the 70s . . . at the very least, they should know about what's now happening to one of their patients, thirty-some odd years after treatment . . . my hope is that somewhere, somehow, someone will say, "Hey, we treated a Hodgkin's survivor who had the same later-life experiences Bob is having, and here's how we treated it . . ."

Dot, the social worker, said we have every right to explore all options, to get other opinions, but first, would we consider talking to someone from the U of M's late-effects clinic, the department that works specifically with long-term effects of cancer treatments? Bob is a perfect candidate for their program, and they might be able to shed some insights onto his situation. That, and they do communicate closely with the Mayo . . .

So, today, we were paid a personal visit by a high-ranking member of U of M's long-term followup clinic oncologists, Dr. M, who headed a major study by the U of M, which found that childhood cancer survivors are at a markedly higher risk for heart problems early in life . . . we met with Dr. M and his nurse, Nancy, for nearly an hour . . . when Bob is better, they want Bob to be seen at their clinic asthey have experience with cancer survivors and late effects of treatments . . .

I am tired, head is swimming with all the information we've had to process and are continuing to process this week . . . I need to mention, that in the midst of this chaotic environment, Bob's pain has been holding steady at a barely discernible level 1 to 2. That hasn't happened ever, in the course of all these months, not even when on the hightest doses of pain meds possible . . . his palliative doctor says it may be attributed to the fact that because all of his pain meds are hanging around his bloodstream due to the liver issue, and therefore producing lasting effects (which, in my opinion, would contradict the supposed withdrawal symptoms). My "theory," and I shared it with Bob, is that back, a week and al half ago or so, when the tumor's blood supply was cut off via an embolizing procedure, that it cut off the tumor's "food" supply, and thus, has starved it. Bob looked at me with his heavy-lidded eyes and said, matter of fact, "That's it. I believe it." So, there you go.

No surgery, another heart attack

Just a quick note to update everyone--Bob suffered yet another heart attack last night at home. Let me stress that HE IS VERY MUCH ALIVE, lest any rumors start circulating... He was brought in by ambulance last night to the U around 10 pm... same right main artery that's been blocking has blocked again...clot was removed, no stent this time...He's now in ICU at the U, recovering...obviously, surgery is postponed indefinitely. Will post more later, but just wanted to get the word out...

LOVE! to all...jen


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