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.