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


- Posted using BlogPress from my iPhone

A safe and memorable Memorial Weekend to all . . .

(picture to the left is of the song our 4 year old niece, Amelia, wrote for Bob, called "My Little Rainbow . . ." She's taking piano lessons, loves to play, and just had her first recital, at which she refused to play, because she, "didn't like all those people looking at her . . .")

Sitting out on the screened deck this evening, enveloped in darkness, breeze lightly cooling us . . . Bob's on his cot, I'm on the wicker loveseat with a glass of wine (Kim Crawford Sauvignon blanc, in case anyone's wondering) and my laptop. Rocco is underneath me, cashed out for the evening . . . Gaia's out on the deck, where she's been for most of the night. I think she's claustrophobic, as she's never seemed to like it out here in the cozy screened-in. Maybe because there's not enough room for the four of us . . . Bob just sat up, told me he's contemplating ice cream . . . off to the kitchen we go, Bob, Rocco and me, for vanilla, with chocolate and caramel drizzled on top. . .

The past few days since he was discharged have been, for the most part, uneventful. Bob has a portable PCA, which connects to the PICC line in his arm and administers a continuous dose of one of his pain meds. It also has a button that he can push to administer an additional boost of pain med as needed. Since we've been home for a few days with it, we're discovering the pros and cons to this setup. Even though the PCA unit is about the size of a Walkman radio (old skool, kidz . . .), it's carried in a shoulder bag with which most women are familiar, but with which Bob is annoyed. It goes where he goes, morning, noon and night, awake and asleep, and we have yet to figure out how he showers with it, too. (Actually, "without" it, as we have to wrap the site of the IV in his arm with Glad Press 'n' Seal, then tape it, then release enough tubing so that the unit can be laid outside the shower, away from water . . . tomorrow will be our shower experiment day . . .) Bob has found the whole thing highly annoying and interfering, but the alternative is to be hospitalized for pain control, so "put up or shut up" is the only alternative at this point. Only a few more days . . .

Initially, the "booster" dose of med was a bit too much—when Bob would push the button, he'd turn into a zombie within a few minutes. Not kidding—he would literally fall asleep standing up, voice stopped mid-sentence, eyes rolled into the back of his head . . .not a fun way to spend the rest of the weekend before his surgery, for any of us. If he could manage to remain conscious, he was confused, disoriented, frustrated . . . a call to his palliative care doc, who adjusted his meds, and then to the home health agency who came out and adjusted the machine brought a better result from the button-pushing. Pain relief with less zombie side-effects. . . still, Bob's not "Bob" right now . . . pain is controlled, but not gone. He's tired, sleeps a lot, though he's still very restless, anxious, has slight zombie-tendencies . . . I was hoping he'd feel up to running a few errands with me today, but I ended up going out alone . . .

Got a package in the mail today; opened it up to find an adorable stuffed owl in scrubs inside.

From Claire and Grace, our nieces in Billings, MT. They went to Build-a-Bear and made Bob his very own owl to watch over him in the upcoming days. Hedwig, as the owl was named, has his own beating heart and a "magical sound" that plays when his foot is squeezed. Rocco is obsessed with him and thinks he should have it as his own, so we have to be careful to keep Hedwig out of reach . . .

We're hoping to have a little gathering tomorrow here; maybe my mom, sisters, their families, for a bbq, to quietly celebrate and honor the holiday. Anyone in town, feel free to swing by and say "hi!"

Even though we're somewhat isolated out here on Walton's Mountain, I can't even begin to describe how enveloped in love, support, encouragement, generosity, prayers, hope that we feel, from so many people in our lives, near and far . . . we have been feeling it throughout this journey, throughout the whole thing, really, but especially these past few days. The upcoming surgery conjures up so many things, so many emotions, so many anticipations, expectations, fears, worries, outcomes . . . it could mean the beginning of a whole new life, a whole new way of looking at life, of living, of being . . . right now, we have no idea. No clue. No inkling. . . all I know is prayers, love, hope, words of encouragement . . . right now, that's all we know . . .

Flurry of activity . . .

Bob's surgery is officially on the schedule. Next Tuesday, June 1st. That was decided for sure yesterday, and as such, Bob's room became the site of a whirlwind of visits, consults, tests, etc. to be done prior to surgery.

He had cardiology consult yesterday; said from a cardiac standpoint, his heart looks strong and healthy, so they gave their "go-ahead" with the surgery. They ceased the Plavix yesterday, will also cease the aspirin upon the surgeon's request a few days before the surgery . . .

Met with someone from vascular surgery, and learned something new: that tumors, particularly bigger ones, actually create their own blood supply by which to feed itself, like some creepy, freaky sci-fi creature . . . so, they're discussing the possibility of doing a minimally invasive procedure to cut off the blood supply to the tumor, which would be done prior to surgery. The goal is that by cutting off the blood to the tumor, it'll lessen the amount of bleeding during surgery.

Anesthesiology also paid a visit and said Bob's good to go, in their eyes. Not sure what the point of that visit was, as they showed up after I'd left; maybe will ask someone today, if I remember. Sounds like anyone and everyone who has anything to do with the surgery needs to give their "thumbs up," or to address any concerns from their perspective prior to surgery. So, it was another good reason to have Bob in the hospital this time, to get a lot of stuff done in a timely fashion. I'm imagining trying to get all of these things done on an out-patient basis, and am pretty sure it would have taken forever, if at all. . .

Bob had an MRI last night, one more pre-op image, to get a current, detailed view of the tumor and surrounding areas. And he had a PICC (long-term IV) line inserted into his arm, and will be going home with a portable PCA (Patient Controlled Analgesia) pump, for his pain meds. I got to go to a class to learn about the PICC (already knew about that) and the PCA pump (new stuff); how to operate it, change the medication, battery, etc. The PCA pump is a device that delivers Bob's meds via the PICC line. It delivers a "baseline" amount of medication continuously, along with a button that Bob can push to control an extra boost of the drug as needed (the "boost" is set to a specific amount allowed in intervals, and only so many "pushes" can be delivered in a set time frame, so he can't OD).

He had one on an IV pole in the hospital, but they have a portable version for home use. Bob'll carry the PCA in a little pack about the size of an old-skool Walkman. The IV delivery of meds is more effective than pills at this point and the theory is that it'll manage his pain better for this next week, while waiting for surgery. His pain has gotten to the point where he's maxed out on the amount of medication he can take via pills, hence, the IV version; uses less of the drug but gets into the blood system faster and more effectively. The trade-off is that the meds make him so groggy and zombie-like. He has a difficult time recalling words, and his memory is also being affected; a frustrating situation for this normally very coherent, in-control guy. He's very tired, but can't actually sleep well . . . it's a delicate balance, getting the pain managed to a tolerable level while still being coherent enough that he feels he can function. His Palliative care doctor assured me that this will be just a temporary set-back, as they'll start weaning him from all these drugs after the surgery.

That's the quick, down-n-dirty update. I know you're disappointed not to get a full chapter today, but got a busy day—head to the hospital for a few hours, then to work the rest of the day. Penny and Jim will be up later, to be with Bob in the afternoon, and to bring him home. Let's all toss up a few prayers that this will be a boring, uneventful week . . .

Another day down, a little progress made . . . {{{hack, cough-cough, hack-hack-hack,gag, cough}}}

I'm taking desperate measures to get better . . . latest effort is a Neti pot up my nose, to try and clear some congestion and post-nasal drip. Thanks Julie, for the suggestion and the photo. New profession: circus freak. Friday night, I even tried an onion/honey concoction I'd encountered on countless websites as a natural "cure all" for dry, hacking, persistent cough. I about vomited all over the kitchen with that one; though I did fall asleep for a few hours after choking it down . . .

I stopped by a Target quicky-clinic Friday morning on my way to work, to see if someone could at least tell me what I don't have—strep, H1N1, whooping cough, pneumonia, bronchitis, sarcoidosis, cystic fibrosis, lung cancer . . . for better or worse, the world wide web has replaced the old-skool Reader's Digest Medical Encyclopedia as my go-to source for self-diagnosis . . . Strep test came back negative and the PA at the clinic said it sounds like I just have a lovely little virus that's running rampant this spring, starts out with body aches, sore throat, low fever and morphs into a dry, hacking cough that, all in all, takes a few weeks or so to clear. Nothing to do except treat the symptoms, so I walk out of Target with a bottle cough medicine, a prescription of little gel-pills that are supposed to melt in the throat and coat it with a numbing agent, more Excedrin, a bag of cough drops and bottle of Vitamin Water to wash it all down.

Thursday night, I had left a message on Bob's beside table for him to show every doctor who came in to see him if I wasn't there: that they must call me after visiting Bob, so I can hear first-hand what was discussed. No more traumatic doctor's visits for Bob to deal with alone. Often, the docs make their rounds so early, before I can get to the hospital, and I end up missing out on critical information. I want to know everyone and everything that comes through his room, so Bob isn't left to have to hear and process all of it alone.

I worked a few hours Friday morning and then got up to Bob's room around 1 pm, chocolate malt from Grand Ol' Creamery in hand. In hindsight, I probably shouldn't have been on 7D, feeling like I have been, but still had so much to do, many people to try to contact, because many doctors aren't around on the weekends. They told me at the quicky-clinic that I should be past the contagious stage of the virus, but tell that to the casual observer who was lucky enough to witness the coughing fit I had while taking a walk around the wing with Bob. Must have looked like a violent evil possession worthy of an exorcism. At the very least, a quarantine.

With gallons of water, the cough syrup, drops and obsessive hand-washing/sanitizing, I held up long enough to talk to the colorectal surgeon on the phone (not sure if it was my bedside message or the message I'd left with his nurse in the morning that prompted the phone call). I was surprised at his candor; despite not knowing anything at all, really, about Bob and his situation, he was extremely empathetic, listening to my concerns respectfully and openly.

At this point, I'm done trying to be "together," done with filtering and censoring words to try to stay on the doctors' level. I will never be on that level, so I have to quit trying. I'm emotional, reactive, on edge, freaked out, sick, scared, desperate, bleary-eyed, mad as hell, cannot bear to see Bob suffer any longer . . . I'm going to make Bob as real a person as I can to these people, so that maybe it finally sinks into their heads that their patients aren't diseases. They aren't tumors. They aren't a diagnosis. They are people, with lives, loves, dreams, fears, hobbies, likes, dislikes, idiosyncrasies, quirks, talents, faults, families, friends . . . who just happen to have a disease, a tumor, a diagnosis . . . pathetic, fruitless endeavor, I know. Doctors don't get to be doctors by being sappy, wimpy, emotional, sensitive wrecks, by caring too much. I don't mean they don't care. They just don't get too attached. And that's probably a good thing for all of us, as much as I don't want to admit it. . . but a little compassion? Sensitivity? Communication skills? or at least have a spokesperson . . .

I tell Doc M that I was extremely concerned that he didn't know about Bob's heart attack. I said, "You're going to be doing a major surgery on him and you didn't know that critical piece to his history? Do you know that that wasn't his first heart attack? Do you know that he's a childhood cancer survivor and that all these critical health issues that he's experiencing as an adult is the result of the radiation he was exposed to over 30 years ago?" That we were told that when they stented Bob's heart, there was a lot of scar tissue in his chest from the radiation. That maybe that is something he, Doc M, might encounter when he does his part of the surgery, and that maybe sooner than later is a better time to know that? That I can't pretend to even have one bit of knowledge about what his role as a surgeon entails, but the more he knows about Bob, in my book, the better?

He apologized for not being more knowledgeable about Bob's condition at this point, but that I should be assured that they will be going over his medical history in great detail prior to the surgery. He went on to explain his role in the surgery, that he will be "clearing the path," so to speak, for the orthopedic surgeon to come in and remove the tumor, and that he will spend considerable time examining Bob's scans, slides and all pertinent information about Bob's condition, alone and with the team. I didn't get any sense of arrogance, annoyance, impatience or any other "doctor attitude" from Doc M. Just a genuine apology and explanation for why he wasn't yet up to speed with Bob's situation. Once again, I'm told that it's going to be an extremely lengthy, complicated surgery, and many very difficult decisions have had to be made and still have to be made. We've been told the surgery will be at least six hours . . .

I then had to ask the doctor why, upon introducing himself to Bob, was the first thing he had to say was that he didn't think he could save Bob's rectal function? I told him that it had disturbed Bob tremendously, that it was a rather harsh and insensitive introduction because Bob was alone, with no support around him, and being on all the medications, he couldn't even begin to process what that meant and what else it could implicate . . .

Doc M first said that he didn't intended to upset Bob; he thought Bob was aware of all the potential issues regarding the surgery and just thought he'd dig right in and share his role, what he was going to be doing, and be upfront about the very real possible outcomes of the surgery, from his standpoint. Yeah, but Bob's never met you before, Doc M, I say. And he was alone, no family or anyone with him when you told him that. Back when Doc O was laying out the best and worst case scenarios, we heard about the good, the bad and the ugly in a general, generic kind of way, but here you come in and throw out what you know, specifically relating to Bob, that's very different. It hit home. Hard. What he heard is that after the surgery, his life will never be the same. In every possible way.

Doc M apologized if there was a misunderstanding; he said that he didn't tell Bob he couldn't save Bob's rectal function, rather that he "wasn't sure" if he could, that there's nothing definite at this point. Based on what he's seen about Bob's situation, the tumor is located in an area where many nerves are located, nerves that control everything from the pelvis down. He didn't say he absolutely couldn't save those nerves, but that the potential for permanent damage was there; that they won't know for sure until they get in and see first-hand how the tumor impacts everything. He tells me that colorectal surgery is his specialty, that he has treated many, many patients who lose bowl and bladder function but go on to live normal, active, fulfilling lives. He's not saying that's how Bob will be, for certain, no one does, but that he wants to be straighforward about the risks and potential outcomes. The main goal is to save Bob's life. That's what we all want, right? he asks me. Absolutely. But, did you have to start with that kind of introduction? I ask. I mean, why couldn't you have started on a more positive, a little more hopeful note? Especially given all Bob has gone through already. . . Doctor M, if someone told you that you could possibly lose all function of your pelvic region, wouldn't you be just a tad bit disturbed yourself . . .

I stood in the hallway, leaning against a window on the 7th floor of the hospital, looking down at the tiny people below, the cars coming in and out of the hospital driveway. I start crying. Again. I tell Doc M that no one appears to care that before this cancer, Bob had a real life. A fulfilling life. He's a very active person. That he likes to camp, hike, kayak, golf . . . that he just started his dream job, but had to give it up almost immediately when the problems with his leg began. That all along this journey, for six months and counting, no one has given us any tangible hope for his life. I mean, yes, they say they can remove the tumor and save his life, but what about his life? His life as he has known it, may be deeply altered in a way that right now, we can't even begin to comprehend. How do you expect someone to take that kind of information in, to even begin to process what that means? All I'm saying, Doc M, is that maybe there was some other way to drop that bomb . . .

He apologized again for that, that he only meant to be upfront, to make us aware of the very real possibilities. We discuss the potential outcomes of the surgery a little more, but eventually he says until he really reviews Bob's records and meets with the other doctors involved in the surgery, he can't give me much more information. I ask him to do me a favor, knowing I'm going to sound like a nutcase, but can't help it . . . that the night before Bob's surgery, will he make sure he gets a good night's sleep, and that the morning of, he eat a good breakfast, please not fight with his spouse, and do the very best work he possibly can for Bob. Please?

There's a pause at the other end of the line. Absolutely, he tells me.

Photo collage of Bob, in his room, right above his bed, Pictures of him doing what he loves and will be able to do again: camp, kayak, drink beer, take pictures, snowshoe. . .

Pull up a chair, grab a cuppa Joe . . .

Could have written this blog at 11 p.m. last night. . . or at 1 a.m. or 2:30 . . . or 3:15 . . . or 4:45 . . . again, Bob is back at the the U, this time admitted because his pain has gotten so bad, beyond the scope of what out-patient pharmaceuticals can do for him any longer . . . again, this week can vie for the title of Worst Week of Our Lives . . . again, it was an act of Congress to get him admitted . . . again, I'm grasping and clawing at the tiniest shreds of hope that no one in the medical community seems to give us willingly, if at all. It's up to us to find it ourselves . . .

I'm going to try to back up and sort through the events of the week, so please bear with me . . . I need to do this, for me, for us, to try to make some sense of this whole hot mess . . . We saw Bob's oncologist, whom I'm from here on out going to refer to as The Lump, as that's as effective as he has been in this whole ordeal. Didn't tell us much of anything new; gave us a brief synopsis of the CT scan Bob had earlier in the day. Nothing to report, other than that yes, the tumor appears to have grown slightly. I ask, in desperation, why the tumor didn't responded to the chemo? Is that normal? Something to be concerned about? The Lump just looked at me as though I were an idiot and said, "Well, sometimes tumors just don't respond to chemotherapy." In between the lines, I heard, "You idiot." We asked if he knew any more details about Bob's surgery, and in usual fashion, The Lump responded, "Well, you'll have to talk to the surgeon's nurse. That's in their court now. I really don't have anything to do with any of Bob's care at this point. I'll come back into the picture after surgery, but you should talk to them about that."

Great. So we leave, and we place a few calls, I call Bob's orthopedic surgeon's office (he's the guy who's going to remove the tumor) and leave a message; Bob, for good measure, calls and leaves a message with cardiology, to see if they've heard from anyone regarding the surgery, since they're the ones who have to make the decision about when Bob goes off Plavix, a topic which has its own host of concerns and issues . . . I end up canceling the rest of my appointments for the day at the salon, because I'm feeling so sick and shouldn't be near anyone with the crud I have, much less Bob, but what can we do about that . . . am only getting a few hour's worth of relief from my beloved Excedrin . . . and now I'm on the rag, to boot. Cramps join in the fun . . . I know, just what you all want to hear. Hey, I'm layin't it all out, peeps. That's how much I love you all, and how close I feel to you . . .

Wednesday, still no phone calls from anyone. Bob's been busy with his Palliative care doc, however; they've been trying to adjust his medications for a few days now, to help him find relief. I go to work another 1/2 day, and have to leave again, feeling like a Mac truck has run over me. I keep reminding myself that it's nothing compared to what Bob's had to go through for over six months now, that I can still partially function in the world, that in a few more days, I'll get over this and feel better again . . . at this point, we have no idea when Bob will "get over" his ordeal, when he'll feel better again. Still haven't heard anything about surgery, so I make another call to the surgeon's nurse, this time, a little more emphatic, I think I'm even crying a bit, Please, please call me back . . . Bob's in so much pain right now, and I know you've mentioned next Tuesday or Thursday as potential surgery dates, but we have so much to do before then, and we haven't heard from anyone yet. . . I even call the nurse's pager and leave my number. . . on my way home from work, Dixie, the surgeon's nurse finally calls me back. She apologizes for not getting back sooner, she tells me that because of both surgeon's tight schedules and all that needs to be done prior to Bob's surgery, and the fact that they're looking at an incredibly extensive surgery—six-plus hours—that it's been a very complicated ordeal to get all pieces in place, and that now they're looking at June 1st (the following Tuesday) as the target date. Poor Dixie . . . I start to unload on her as I'm driving home . . . worse than a drunk driver, I'm sure I am, as hot, blinding tears blur my eyes, snotty nose, words garbled by thick saliva tumble out of my mouth, I tell her that I get it that these doctors are very important and busy and geniuses and all, but Bob has been suffering for six months and counting, and at this point, I have no hope that this surgery will ever happen, that no one appears to give a damn that Bob is in this state of suspended living (if you can call it that) for so long, that he hasn't been able to work, he can barely walk or sit or see friends, or do anything at all that he used to, that The Lump (I didn't call him that to her . . . ) gives us nothing, no hope, no light at the end of the proverbial tunnel . . . for an oncologist, he is the most insensitive person I know, he gives us nothing, we learn of things from other doctors, other people, after seeing him . . . that none of the doctors Bob has seen during this whole ordeal has given us any inkling of hope . . . that no one seems to care that there's a person at the end of this tumor, a person named Bob who hasn't had a life in over six months, with no end in sight and is so beaten down and despondent that his life will never be what it was . . . that he's more than just a tumor, or a heart attack or a colorectal patient, that he likes to hike and go camping and kayaking, and walk our dogs and go golfing with friends and was excited about a new job and loves to travel and is a good, funny, honest, ethical, smart, kind, loving person who loves nature, who wants to get his cameras out and take more pictures. . . Dixie listens patiently to me until, gasping for breath, I finally stop myself, apologizing for dumping on her but unfortunately we can't get the doctors on the phone like this, and I know it's not her fault and I hope she doesn't take what I'm saying personally and no wonder nurses want to go on strike when this is what they have to deal with day in and out, they don't get paid enough to have to handle nut-cases like me . . . she interrupts me and gently tells me it's okay, that that's part of her job, that any time of day, if I need to page her, I've got her number. That she's going to have the surgeon call me in the morning, so he can give me more specific information regarding Bob's surgery, the CT scan, the outlook, maybe give me more concrete information to ease my mind . . . I say I'm going to be at work all day, that he can call Bob if he can't get a hold of me. "No, I think he needs to talk to you. I'll make sure he calls you right away in the morning . . ."

So, Thursday comes, Bob's pain has become excruciating, to the point where he can no longer be on his feet for even a few seconds before sharp pain shoots through his leg, taking his breath away, forcing him to lie down. He's been working with his palliative care doc, for several days, who finally tells him today that there's no more she can do out-patient for him, that it's high time this surgery be scheduled . . .

Thus begins my flurry of phone calls for the day. I don't even remember whom I speak with first . . . I think I started with Bob's oncologist, The Lump. I didn't talk to him directly but told his nurse what was going on, that Bob's palliative doctor feels he needs to be admitted to the hospital for pain control, and that while he's there we can get the ball rolling and get everything that needs to be done done, meet with the colorectal doc, any other docs that need to see him, get tests done, cardio clearance, etc. . . she told me that The Lump has said if Bob were in the hospital, the appointment he was to have with the colorectal surgeon (the other 1/2 of the surgery team) on Friday would have to be cancelled. Why? I ask? He's three hallways away from the hospital. Can't he just walk over to Bob's room?

"That's not how things are done," I'm told. "Bob needs to see this surgeon before his surgery, many doctors don't see patients in the hospital, they only see them in clinic. If he doesn't get in tomorrow, it could very well delay Bob's surgery." She suggests he wait it out till tomorrow, then be admitted after his appointment with the surgeon. I don't even remember ending the conversation; I do remember pleading with the nurse that this is a critical situation, that Bob's pain needs to be addressed and he needs to see the surgeon, and that both things should be able to happen now.

In the meantime, I've called Bob's Palliative Care doc, left a message for her that his pain has increased dramatically and asked what should we do. She calls back, I explain what the oncologist's nurse said, and she suggests that if Bob can wait till tomorrow, maybe that would be best, because she doesn't have the authority to demand or control a surgeon's schedule, that she doesn't know the protocol of patients seeing clinic doctors while they're in the hospital . . . she mentions something about a crack on Bob's sacrum, which showed up on the CT scan that was done on Tuesday, that maybe that's what's causing this increased, spreading pain—Wait a minute! What the hell are you talking about—WE didn't hear anything about a crack in his bone! The Lump (again, I didn't call him that during the conversation) made no mention of anything about a crack . . ." She tells me that she just read Bob's records this morning and saw that note on the scan; that maybe I need to talk to The Lump or the surgeon for more details, because there was nothing more about it other than that it was found. She also reiterated that if we needed a doctor to admit Bob, she would be more than willing to do so for us.

The orthopedic surgeon calls our home phone as I'm talking to Palliative Care; Bob and I switch phones, and I have a pretty lengthy, detailed conversation with the orthopedic/oncology surgeon, Doc O., who will be removing the tumor. My head is ready to explode at this point and I can barely concentrate on what he's saying . . . he did give me an amazing explanation as to why Bob's tumor wasn't affected by the chemo. That much I do remember of that conversation: that osteosarcomas are tumors that basically turn into bone, they're rock-hard masses that encase tumors. Therefore, the mass itself typically doesn't respond to chemo, but they'll know more once they get in and remove the mass and examine it more closely, to see if the cancer cells within the tumor have died . . . he also affirmed that, yes, a crack was found on Bob's sacrum, where the tumor is located, but that probably occurred because the part of the bone where the tumor is is very thin and fragile . . . that it won't affect what he will be doing as far as the surgery is concerned. I told him about the increase in pain Bob's having, that we want to admit him because Palliative care can't do much else out-patient but that The Lump has said if Bob's admitted, the appointment with colorectal surgeon will be cancelled . . . Doc O thought that was odd, that doctors at the U see patients in the hospital all the time. He suggested I call the colorectal dept and ask them directly, and affirmed that Bob should be admitted to the hospital. I got off the phone, made a quick call to the colorectal surgeon's office, and of course had to leave a message. I'm pretty sure it was a long and winding one that didn't make much sense but basically asked if the doc could still see Bob if he were in the hospital because the appointment is a critical piece to Bob's surgery.

Finally got off the phone and tell Bob all I've been told. He listens quietly as he lay on the cot out on the deck. I tell him I think we should call his Palliative care doctor back and have her admit him. That way, we can bypass the ER and its forever-wait, and just get in. He's worried sick that by being hospitalized, the colorectal appointment won't happen and his surgery will be delayed once again. He starts crying. I don't know how much longer I can do this, Jen. I don't even know how to process all of this, what to do, what to think any more . . .

I sit at his side for a few minutes, rubbing his back. I can tell he's fallen asleep (finally), so I quietly get up and head for the shower, to try to clear my head, ease my aching body. As I'm quickly rinsing off, I decide enough's enough. This is all so unbelievably stupid. Bob needs critical care right now, and needs to see the surgeon, who is a hop, skip and a jump away from the hospital. He's going in, and we'll get that surgeon over to see him, whatever it takes. I can't believe I'm having to make all these ridiculous phone calls, to beg and plead and cry to get someone to give a damn about Bob and his very critical situation, that no one is taking the steering wheel, that I, along with input from Bob's mom and dad, are the ones who has to try and figure it all out, and I am so pathetically, sorely under qualified, it's ridiculous . . . I get out of the shower, quickly get dressed and call the Palliative Care doctor's pager. She calls back quickly, and I ask her to have Bob admitted. That I will somehow, someway, make that other surgeon's appointment happen tomorrow, if I have to wheel Bob down to his office myself. This has gone on too long. He's suffering. He's in pain, immense, immeasurable, incomprehensible pain and needs to be in the hospital. She agreed and said she'd make the call, and let us know when it was done.

I went out and told Bob I'm waiting to hear from his Palliative doctor to get him in to the hospital. He started protesting, but Penny and I told him it would all be okay, things will all work out. He needs to be in the hospital right now, and the rest will fall into place. I call the salon and clear the rest of my schedule. Shortly, we get the okay from Palliative care that Bob's good to go, back up on 7D, where all his peeps are. His home away from home. On our way to the hospital, or maybe it was while we were in the hospital, I don't remember, I got a phone call from the colorectal surgeon's office. "No problem," was the basic gist of her message, that she'll schedule someone, hopefully the surgeon who is heading that piece of the puzzle, or one of his team members, over to see Bob once he's settled.

Most of the day is just sitting around, getting Bob hooked up to a PCA pump, which via IV, will give him more control over the pain meds he needs. I field a few more phone calls, one to patient relations at the U (which will be a blog for another time, my rantings about the cluster-fuck that is the U of M medical system. Absolutely ridiculous. Horrifically stressfully disjointed, like a cancer all its own, hugely out of control, no one speaks to each other, no one is connected to the other. GREAT case in point is the colorectal surgeon who came to see Bob in his room. I had waited and waited and finally left to go to the can and of course, wouldn't you know it, that's when Doc M, the colorectal surgeon, arrived. Thankfully, I met him and his student-doctor-partner person in the hallway outside Bob's room just as they were leaving. We're chatting a bit and somehow in the conversation, I mention Bob's heart attack. Doc M looks at me. "Bob had a heart attack?" I look at him. "You don't know this? Are you kidding me? At the end of March, while receiving his last round of chemo. . . " I look at him in disbelief and he quickly ushers me back into Bob's room, saying, "We can go back in and talk to Bob, if you wish." At this point, I don't even remember much of the conversation other than that, once again, I plead for them to get moving on the surgery, that while Bob is here, get all that needs to be done done, and get the show on the road. We talk a bit more and then they excuse themselves.

Later, Bob tells me that when this doctor was in his room, before I arrived, he introduced himself, and basically the first words out of his mouth were, "I don't think I can save your rectal functions, Bob." The very first thing out of his mouth. Not, "Hi, Bob, I'm Doc M, and it's nice to meet you. Even though this is going to be a very complicated surgery, I'm confident we're going to pull through. You're a fighter, and a strong person . . . " No. Basically what Bob heard was, "Mr. Andrzejek. You're going to have to shit in a bag for the rest of your life."

See, peeps, this is the kind of shit we're up against . . . I'm sick and tired. Literally, sick and tired. I laid next to Bob in his hospital bed for a while yesterday, he stroked my hair, my arm . . . I cried into his chest, told him I'm making a collage of pictures of him to bring to his room, to hang it up in full view and make these assholes know who they're working on. Not once, on this whole crazy scary carnival ride has anyone made any effort to know who Bob is. Maybe if they did, they'd care just a little more than they do now . . .

Inching closer toward surgery . . .

Had Bob's pre-surgery CT scan this morning at 10, with an appointment to see his oncologist at 1:30. We haven't been to the U in a few weeks, seemed like eons since we last made the drive. The CT scan went quickly, which meant we had more than a few hours to kill before the appointment with Dr. S. I needed an oil change, and we both needed something to eat, so we headed over to Roseville, to Valvoline and for some grub.

I've been battling a nasty li'l bug for the past few days here; good ol' fashioned body aches, sore throat, fever, so tired, headachy, not much of an appetite. . . starting to sound like a cold medicine commercial. . . I've been popping a few Extra Strength Excedrin every several hours—warning, shameless product plug ahead—if you have never dried this drug, you must (man, listen to me, sounding like some kind of pusher . . .) I rarely use any medication, even OTC, but, Excedrin is the wonder drug that works wonders; ever since Penny (the original Exedrin pusher) turned me on to it years ago, I use it for all that ails me, and nothing anything else. Oh, I try the others—TheraFlu, NyQuil and the like—but they don't touch my aches and pains like the miracle-drug, Excedrin. I could write a song, extolling its virtues; gives me a few hours of reprieve from the symptoms, so I can at least half-function for part of the day. Even if it's just a placebo effect going on (which, incidentally, I've read quite a bit about lately, about it's powerful use in successfully treating a whole host of illnesses), I'll take it!

I haven't been sick like this truly in years, and have forgotten how much it sucks, and how much of a baby I can be . . . I'm feverishly (literally and figuratively) trying to keep the house as germ-free as possible as the last thing we need is Bob catching whatever bug this is I've got; lots of Clorox wiping, disinfectant spraying and hand sanitizing going on over here. I drove to the U with windows in the car open, hoping my germs would be flung out of the car as we cruised down 94W . . . nice little mental image, if nothing else . . . I'm not much help for Bob right now as I want to keep my exposure to him as limited as possible, short of moving out for a few days till this crud passes. . . I don't mean to be a big whiner, but my worst fear is that Bob'll catch this, make him very sick and force us to postpone surgery yet again. (It'd be a miracle if he doesn't catch it, because right now, I feel like Pigpen from the Peanuts comic strip, walking around in a cloud of germs. I was so hoping that I was home-free in the bug-catching department with May 1/2 done . . .) That, and I just can't do much for him right now, so I feel kind of useless . . . I was just too tired and cruddy-feeling to night to make dinner; thankfully we had leftover salmon for him to heat up, along with some fruit and ice cream for desert. He's kind of having to hang out by himself because I don't want to be too close for him for too long.

I popped a few Excedrine before heading to Roseville after the CT, which held me through the next few hours; we got the oil changed, grabbed subs at Jimmy John's and still had some time to kill, so we drove to Central Park in Roseville. We found a cool patch of shade, spread out a blanket and both laid down in the park for a good half hour-45 minutes, sometimes catching little bits of zzzzz's, sometimes watching the action in the park around us, sometimes chatting a bit . . . seemed that for a Tuesday afternoon, a lot of people had the same idea we did. . . nice way to while away some extra time. . .

Got back to the U in plenty of time for the appointment with Dr. S. Not much news to share, as for now, his part in the adventure is done. He told us that according to the CT scan, the tumor appears to have grown slightly, which would account for the increased pain in Bob's leg and, in Dr. S's opinion, isn't surprising, given that Bob hasn't had chemo in several weeks now.

This appointment, like every other one we've had with Dr. S, revealed nothing spectacular, nothing even remotely uplifting, nothing even kind of, sort of resembling compassion, empathy, hope. . . nothing. I simply cannot get a good read on him—is this something we need to worry about? He doesn't seem to be . . . I still don't know why this doctor is held in such high esteem; as I think I've said before, other than pumping Bob full of toxins and nearly killing him in the process, he doesn't appear to be the "miracle worker" that several people have built him up to be. I even asked him today, again, what the point of the chemo was, if not to shrink the tumor, and what explanation could he give for Bob's tumor not responding to the chemo. He just shrugged and said that sometimes tumors don't react to chemo and left it at that. Didn't say it was good or bad, didn't react in a way that caused me to react (at least not right away), so . . .

Because I'm not feeling great, my mind wasn't firing on all cylinders, and now that I'm writing about it, all the questions I should have asked came to me now, hours after the appointment. Are there other types of chemo drugs that could have been tried, that might have worked better? Is this something to be worried about, the fact that the tumor didn't respond to the chemo? How do you know the cancer hasn't spread during this time of waiting? Will he need more chemo after the surgery . . . Guess someone'll be getting a call from me in the morning . . .

We have a few more loose ends to tie up before the tentative surgery next week. Bob still has an appointment with the general surgeon on Friday, has to get in to the cardiologists for their clearance and for instructions on getting off Plavix, and I'm sure he needs to see or at least speak with the oncology surgeon before the big day. I'm not even going to speculate on the time frame of the surgery any more, as it seems like there's so much that needs to be done yet, I don't now how it'll all happen by next week. But I'm hoping and praying we'll have that definite answer soon.

Oh! A total aside, but a huge deal I didn't want to forget to mention: Bob weighed in at a WHOPPING 122 lbs. today at his appointment! My husband finally weighs more than I do again! He doesn't think he looks very good, but I can see that his face is filled out more, that his abdomen has a little more meat to it, that his coloring is much better. I even think his hair is starting to fill in again, but that's probably expected, since he hasn't had chemo in a long while.

Okay. Need. To. Go. To. Bed. NOW!!! LOVE! to all!!!