Wednesday, June 30, 2010

I was going to title this blog entry, "Back to ER," but I think I already have about six previous entries entitled that and it's getting kind of confusing . . . need to come up with something else . . . I'll get back to that . . .

Bob was home for ten whole days before going back to the ER, then back up to 7D, at the recommendation of his primary care doctor and his cardiologist. Overall, he seemed to be doing okay, but as the days progressed, he has become more and more exhausted, plain and simply wiped out. He slept a lot and when he woke, wasn't rested, took enormous amounts of energy to do even the lightest of tasks . . . This past week and a half had also presented us with some daunting homework: to gather as much information as we can about Bob's options, which boil down to surgery or no surgery. To sort through the risks vs. benefits of each option, quality of life issues vs. curative issues, and all kinds of other heavy, heavy things I am so unprepared, ill-equipped, scared to death to deal with. And that's just my point of view. . .as much as I try, I will never, never, never begin to understand even one tiny iota of what goes through Bob's mind every second of every minute of every hour of every day. Maybe that has compounded his overall feeling of crappiness . . .

We already have Bob's oncologist's opinion (if you can call it that), which is a big cloud of doom, no matter how he looks at the situation: surgery is fraught with enormous, life-threatening risks and lots of unknown outcomes that will undoubtedly alter Bob's life dramatically. And in his opinion, despite surgery, there is still a 50% chance the cancer will come back. Yeah, but, I say weakly, doesn't that also means a 50% chance of it not coming back? Not doing surgery means we call hospice . . . what the hell kind of choices are those?

So, the longer I thought about it, the way I see it, is that this is one person's perspective, just one person out of countless players in this great, big, humongous event. And we've seen time and time again, evidence of how vast and varied, conflicting and confusing as all hell doctors' opinions can be, even with the most minor of situations. As my friend, Julie says, "Just because a doctor says something, doesn't mean it's true . . . " I've had to tell myself that over and over and over a million and one times this week, and still am not entirely convinced. Damn him and his Doctor title. . .

We have several other people to consult with, to get other perspective, opinions, insights, multiple times, if need be. Today's appointments were with the orthopedic oncologist who will be doing the main act of Bob's surgery, removing the tumor; the colorectal surgeon, who plays a supporting role; and his cardiologist, who needs to give the thumb's up that Bob's heart is able to withstand the ungodly demands of the surgery. The appointments were back-to-back-to-back, meaning everyone had to be on time or one of these critical appointments might have to be rescheduled, which would require an act of God, who is, I'm sure, really getting tired of intervening on our behalf . . .

So, we go to the first appointment, the orthopedic surgeon. Once again, I've got my page and a half of questions ready to fire off at him, my speech prepared. I'm ready. And, once again, as it's happened in the past with this doc, I've hardly had to ask a one, because he covers all bases, anticipates almost all of our concerns, as though he somehow, mysteriously, managed to sneak my notebook and peruse my scribbled notes before we arrived. The long and the short of it is, in his opinion, why would Bob not want to proceed with the surgery? So long as Bob gets cardiology clearance, the surgery is his only curative option. Based on the most recent CT and MRI scans, is still absolutely do-able, even given Bob's heart history and everything else that's crumbled down upon him.

The doc pulls up the scans and retraces the area of bone that will be removed along with the tumor, explaining how, that even with that amount of bone loss, Bob's body will recover. It will be a long recovery with a lot of rehab, and yes, there will be some adaptations to his mobility and possibly other functions, but he will recover. He looks at the tumor on the scan and more to himself than to us, says, "The tumor doesn't appear any different, really, than the last scans . . . " his finger traces squiggles, shadows and other foreign objects dotting the charcoal image. "These look like they could be air pockets, which might be evidence of a dead tumor, spaces that were once cancer now filled with air . . . can't say for sure until the tumor is removed, but that's what it looks like . . . " He's straightforward, doesn't sugar coat anything, but fills me with a sense of confidence and calm as I sit and listen to him, almost in awe that he isn't the black cloud of doom that Bob's oncologist is. Wait a minute . . . could it be, a little ray of hope pinpointing the darkness of the past eight months and counting? Don't get too excited, Jen . . .

"So," I say, tentatively, "the surgery 'cures' Bob of the cancer. What about his quality of life? So what if you can remove the tumor? What if his quality of life isn't any better than it is right now? Is that worth all the monumental risks? 'Cause I'm here to tell you that Bob is about tapped out here . . . can you tell us with a measurable degree of certainty that Bob will be able to go back to work, will drive again, will regain his life back, with this surgery? Because if not, then are all the risks worth it?"

Doc O kind of looks at me like I'm a little bit nuts (I'm used to this look by now), but continues in a dumbed-down yet highly effective manner. "See, sometimes tumors are soft, and the effect on nerves isn't quite so dramatic, but an osteosarcoma is basically a rock. Bob has a big hard rock on his sacrum, and the nerves involved are pinched, strained and stretched around, against and within this rock-hard surface. It's kind of like a rock in your shoe—hurts like hell, and the only way to get rid of the pain and discomfort is to remove the rock." Sounds convincing, but still, it's not like he's going to be removing Bob's appendix here. This is a tumor, along with a lot of bone, and who knows what else . . . nerves are entwined, too . . . so many things that affect his ability to get around, do the things he used to do, live life again . . .

I ask about the other non-surgery, palliative options, such as the burning or freezing of the tumor as had been suggested a while back. Palliative measures are, at best, a last resort, we're told, because they don't get rid of the rock or reduce the pain. It might kill some cancer within the tumor, but the tumor is still there. The other option of destroying the nerves affected by the tumor and causing the pain is at best, experimental, because the tumor will still be there and likely eventually grow and spread, and the entire mobility of the leg will likely be affected. By removing the tumor, they get rid of the cancer. And because they're freeing the nerves from it, Bob's pain will be diminished dramatically and eventually, he will be able to resume much of what he did before the cancer. Maybe with a leg brace, a cane and/or a few other adaptations, he continues with a shrug, but his quality of life will absolutely improve. . . and he will be alive.

From our continued conversation, it appears he wants to move sooner than later, so getting cardiac clearance is a high priority. He also tells Bob to make sure and mention to cardiology that he's not feeling well; if anyone needs to check on that, cardiology is the team. We move on to the next appointment, the colorectal doc. His speech, in an abbreviated version, is much of the same. His role is more of a supporting role, he tells us, but I tell him otherwise. "You're the expert on bodily functions that could be severely impacted by this surgery. I personally, think it's pretty important . . ." He tells us that by the CT and MRI, the colorectal functions may not be as impacted as they first thought. "Yes, we need to be prepared for anything, because we don't know for sure until we get into surgery, but the tumor doesn't seem to be as close to the rectum and its nerves as we initially thought . . . " We're told to not worry needlessly about something that isn't a certainty . . .

By this time, Bob is feeling pretty lousy. Nothing specific, just the generalized lethargic, wiped-out, exhausted kind of lousy that has progressively gotten worse over the past several days. We noticed it over the weekend, but he, in usual fashion, has tried to tough it out, shake it off, see if it'll pass. It ain't happenin'. We're dismissed from colorectal and head up to cardiology, thank god in the same building, just up two floors, or we might not have made it, given the time constraints. Primary care is right next to cardiology and we decide we'll take a jaunt over there after Bob's cardiology appointment, take advantage of this new team in Bob's care, as they told us last week to stop in or call at any time if anything seems amiss.

We don't wait long before we're ushered into the cardiologist's exam room and are joined by Bob's cardiologist a few minutes later. Can I just say that I love this man? He's confident bordering on cocky, obviously an adrenaline junkie (he likes to tell us that he's had some of his personal best times in treating heart attacks with Bob's two incidents, as though it were the Heart Attack Olympics) but has a genuine interest in his patients' health and well being. He strides into the room, takes one look at Bob and exclaims, "My god, you look great, Mr. Andrzejek! I can't believe it. I mean, that's all relative, given I usually see you on death's doorstep in the cath lab, but really, you look great! How do you feel?" Not so great, Bob responds, and immediately, Doc B delves into Bob's most recent history, asking a million questions that I can barely keep up with, regarding his recent hospitalization and discharge, what's going on, what symptoms is he having, what needs to be done . . . eventually, he decides that Bob likely isn't having any kind of cardiac event, "Because I've seen you enough times in a cardiac crisis, and I truly don't believe that is what's going on," but is teetering on the verge of dehydration again, that and being severely malnourished. He looks at Bob and says, "My gut says that all you need is some IV fluids and some lunch, but to be safe, let's admit you to ER, so you can be closely monitored and see how you do there. If need be, we'll have you admitted if there seems to be something else going on."

So, with that, we were whisked back down to ER, Bob was hooked up to an IV, and we sat for over five hours. An EKG was done which appeared questionable—not because a heart attack was going on, but because Bob's trembling limbs (side effect of weakness and meds) seemed to be interfering with getting a clear EKG . . . but again, to be safe, the attending docs, his primary doc and cardiologists decided, in an effort to try to stay on top of things, admitted him back up to 7D, hopefully as a preemptive strike against another major medical crisis.

It was nearly 6:30 pm when we were finally escorted back up to 7D. Immediately, Bob asked if he could order dinner and when it arrived, he inhaled it. A few tending docs arrived, poked, prodded and questioned Bob a bit, then said the main docs would be by in the morning, to give us a more detailed game plan, and that for tonight, the goal is to get Bob comfortable and settled in.

Eyes are so, so tired but wanted to get this out, try to sort out the details of the day. . . the info we got from the docs today was so much more encouraging than we've heard in a long time, and I know Bob felt at least a little boost by talking with them. Seriously, have so much to write down, but having a helluva time keeping my eyes open. Maybe more tomorrow. . .




Monday, June 28, 2010

The official definition of "Between a Rock and a Hard Place"

My "baby" sister, Gretchen, got married to her beloved, Brian, this past weekend and what a lovely day it was, despite the heat and humidity. The bride and groom were stunning, the ceremony a tear-jerker, the flowers and all the decos breathtaking, and the day went without a hitch, despite tornado sirens closing down the dance a little earlier than expected. Thankfully, all made it home safely. . .
(pic is of Gretchen, Brian and his daughter, Sophi)

Even though I knew in my head that Bob likely wouldn't feel well enough to attend, a little piece of me still held out hope that maybe Saturday would be a "good" day for him and he would feel up for coming to at least the ceremony, accompanied by his parents. No such luck. Not only was he not feeling well enough physically, I think the idea of facing so many people in a public setting at once (when his microscopic world, for the past eight months, has consisted of me, his parents and medical professionals), sent him into a mini panic attack until I convinced him that it's okay that he didn't come, Gretchen understands, I understand, no one was expecting it.

I was grateful Penny and Jim were able to come up Friday, so I could partake in the events of the weekend, but what a tug-o-war of emotions it was, to feel elated for Gretchen and Brian and their special day and so wanting to be a part of this monumental chapter in my sister's life, but so sad that Bob couldn't be there and share in it, too. Had some guilt mixed in there, too, I'll admit . . . no, not some. An immense amount . . .that I am able to just up and go to the groom's dinner, the wedding festivities, the dance, whatever I want, whenever I want to . . . but Bob simply cannot. Even if he felt well enough to attend the wedding, he'd have to rely on someone to get him to and from . . .

I kept thinking about our own wedding, almost 15 years ago, same kind of soupy day, tornado warnings that night, too. Gretchen wasn't even 21 then. I remember catching a glimpse of Bob standing next to his parents, before the ceremony, crying (now that I think about it, maybe they weren't the tears of joy I'd assumed they were). . . we danced all night, my entire face ached from all the smiling, laughter, talking . . .so many friends and family with us to celebrate . . . we had the "honeymoon" suite at our hotel, but the only action in the jacuzzi that night was me soaking my throbbing feet . . .

I stayed at Gretchen's reception and dance, for as long as I could, till about 9 pm, until I could hardly breathe under the weight of my heart in my chest, and I couldn't stop the tears pooling in my eyes. . . I gave a quick "good night" and kiss on the cheek to Gretch before dashing out to the Jeep and heading home, jags of lightning tearing up the blackness around me. . . when I got home, I changed into my jammies and laid down on the floor in the living room, next to the couch where Bob slept and cried all night. . .

Penny and Jim left late Sunday afternoon, but not before taking the entire day to completely power-wash our deck for us, prepping it for a new coat of stain. It was so freaking hot, I thought for sure at least one, if not both, of them would pass out on us as they busted their butts out there, but by the grace of God or something, they survived. The deck looks awesome, even without stain . . . after they cleaned up, they had dinner with us out on the fresh, clean deck before heading back to St. James.

Despite having a pretty low-key, uneventful week since Bob was discharged from the hospital, it's still been a tough week. Because Bob is more coherent and lucid than he has been in a very long time, he's had this time to finally process all that has happened over the course of the past several months and I think it's all come crashing in on him, in wave after wave . . . he hasn't really been able to do so before, because he was either so overcome with pain or so absolutely fucked up on pain medications—sorry, but there's no other way to describe it—before the most recent heart attack, he was a zombie, plain and simple, thanks to the shitload of narcotics slogging through his blood, slurring his voice, severing his memory, glazing his eyes, turning his limbs to lead, mangling his ability to think . . . He has scant recollection of the weeks leading up to the May 31st heart attack, or the few weeks after, thank God . . . but now he is of very sound mind, I think he's overwhelmed with the layer upon layer upon layer he's trying to wade through.

As we sat on the deck with Penny and Jim, Bob kind of bared his soul to us . . . said he can't go on living the way he is now, that some very serious decisions need to be made and need to be made soon . . . for all intents and purposes, he is an invalid and his life has been on hold for far too long. He would not be able to live on his own, in the condition he's in, he tells us. He has to rely on me and his parents to get through the day, he's afraid for his own safety if left alone for any length of time. There is very little he can do that he used to do—can't walk very far, can't drive, can't work, can't prepare but a simple meal, the things he can do take an enormous effort and utterly exhaust him . . . I know this first hand, hence taking the leave of absence from work. . . . A year ago, he said to us, he was on top of the world, had everything he could ever want, was in the best of health, had a great job, was doing everything he loved to do. Now, all of that has been stripped from him and no one can tell him if he's ever going to get even a little piece of it back.

And no one has any words of encouragement because words of encouragement seem so absurd, so fucking ridiculous, so pathetically out of place right now. We say stupid things like, "You can't give up," or "You're so strong!" and "I wish there was something I could do to ease your pain," and he's looking at us like, "Seriously. Shut the hell up right now. All of you. How 'bout you try this? Just for just a few hours, take my place here, because I'd really like to play a round of golf before summer's over?" How do you encourage someone whose been through all he's been through, without a break, not even for even a day, for the past eight months and counting. How do you inspire someone whose choices are A. Have a surgery that runs a high risk of killing you either by heart attack or bleeding to death, but should you survive it, no one can even tell you how successful the outcome will be, how much of your life you'll get back or what the quality of that life will be? Or B. Don't have the surgery and start planning hospice . . . isn't there a C????

Looking back to March, despite the scary "C" diagnosis and the chemo side effects, things seemed so relatively easy, so cut and dried; the decision was basically made for Bob, to have surgery to remove the tumor, done deal. Since the first heart attack in March, however, our world has been in a blender, stuck on puree. Since March, everything has changed, and continues to change daily. No one can keep up or make any sense of any of this, not us, not even his doctors, despite the sheer number of them working on his case. . .

This coming week is going to be a tough one . . . Bob had a CT scan and MRI done tonight and has three doctor's appointments on Wednesday, back-to-back-to-back . . . orthopedic oncologist (the surgeon who will remove the tumor, if we get to that point), the colorectal doctor, who is also has a big role in the pending surgery, and cardiology. We've basically gone back to square one, in redesigning Bob's treatment plan. This week, our mission is fact gathering, amassing as much information as we can about all the options, outcomes, what if's. We need to talk to all the key players in Bob's treatment and get some solid answers, insights into the two choices he has: surgery or no surgery. The scans were done to see what's going on with the tumor, to see if it's grown any, and if there's any signs of spreading, being chemo has been long out of the picture.

And that's about all I can write about any more. I don't even know how to begin to sort through it all, and I'm not even the one with cancer. But once again, even in the midst of all this, can I still say that somehow, somewhere deep, deep inside of me, I know things will turn out okay for Bob? Maybe because that's all I can do. Or maybe it's just one of those stupid fucking things that I can't seem to stop saying.

Wednesday, June 23, 2010

Living between two worlds . . .

Ten thirty on Thursday evening, we're sitting in the living room, Bob is sleeping, candle burning, I'm typing, Rocco is pacing from room to room, growling and barking at an unseen threat through the patio screen door, then front window, back to patio door . . . we must be surrounded . . .

I've joined Bob in the Land of What Day is It? I'm not working for the time being and each day seamlessly becomes the next, with little to distinguish them from each other. A tiny taste of what life has been like for him for the past eight months—no, I take that back. It's rather arrogant of me to even say that, as really, even though I live with him, I have no idea what his life has been like for the past eight months. None at all. A life on hold for eight months and counting. Disconnected from the life he knew, the people he knew, friends, co-workers, a job, his photography, hiking, camping, kayaking . . . not to mention the great big C word looming above, every second of the day, and the physical reminders that tag along—the pain that never leaves, the skeleton looking back in the mirror, the face swollen from steroid pain medications, arms and belly covered with blotches of bruises from IVs, shots, catheters . . .the mental ones as well—the cloudy thoughts that drift in and obliterate everything else, the sleepless nights, the sleepy days . . . top that off with the heart issues and their many layers deep . . . I really have no idea. No idea whatsoever. And should just shut the hell up, thinking I'm getting "a tiny taste . . ."

I hold my breath each day, trying not to think of what might go wrong, what could go wrong, trying so hard to hold onto the good, good days we've had this week . . . I have to remind myself to stop and take deep breaths many times throughout the day. . . we've had four days of peace and quiet, just the two of us hanging out. For brief nanoseconds, our lives feel normal again, then a pill bottle or a heating pad or the sight of blankets on the couch quickly reminds me that it is far from that.

I flit about the house, the yard, popping in to check on Bob, taking short walk with him and Gaia—Bob can outpace Gaia these days, as the ol' dog is moving slower and slower. She's taken to sleeping outside nearly 24/7 and only comes in when I coax and plead, practically having to drag her 100 lb. body inside if it starts raining or gets too hot and humid. Makes me sad, watching my big old doggie grow so old before my eyes. She still likes to go on walks, slow as she is, so I try to get her out every day, even if it's just for a block or so, to sniff, pee a few times, and uncreak her creaky bones.

Bob has been feeling pretty good these past few days; says his mind is raring to go but his body just can't keep up the pace yet. I remind him that he just spent nearly three weeks in the hospital, to cut himself some slack and take it little by little. I told him today how happy it has made me, this week, to see him moving about so much more in the house—up and down stairs, into the kitchen to make a sandwich, outside to get the mail. Haven't seen that much activity from him in months and months . . . He says, "Yeah, but do you know just how hard it is for me to do all that? Takes everything out of me . . . " He tires easily, and we really have to schedule his activities and take lots of rests and breaks in between so he doesn't overdo it.

It's hard on him to sit for long, not just because of the pain caused by the tumor but because it takes many muscles to sit up straight, and he's lost so much muscle mass and strength over the past several weeks. He has been diligent about keeping active, though, with our walks, and with strengthening and stretching exercises he has from PT and OT, and I hear it in his voice, the determination to get stronger. He's still so thin—107 at the doc's office today—but the thrush in his mouth is nearly gone and his appetite is getting stronger every day, so we're hopeful that he'll be able to put on at least a few pounds again (and not just from ice cream). We shared a Jack's pizza tonight; "back in the day," Bob could put away a whole pizza. Tonight, he maybe had the equivalent of a couple pieces. But he did have room for the Heath blizzard that my sister, Gretchen, brought over from the DQ. My mom, my niece, Brittany and Gretchen's fiance, Brian were along for the ride and we all sat out on the patio, savoring our ice cream in the long shadows of the waning day.

Had an appointment with a new doctor yesterday (Wednesday), this one, a primary care doc. He is to be our go-to man, the central hub of Bob's care. We were assigned this doctor after the most recent hospitalization, after I, once again, begged and cried for someone to take over, for one party to step up and be in charge once and for all. I'm sick and tired (literally) and sorely under-qualified for the job and Bob's situation has become so complex and complicated.

Technically, we'll be working with two doctors from primary care—one is a resident, Doc G, whom worked closely with Bob over the past two hospitalizations and really knows his shit, to put it frankly. The other is Doc G's supervisor. Both of these doctors are amazing—talk about bedside manner. They listen, they ask questions, they allow us time to ask questions, to vent a little, and then offer solutions to our issues . . . what a concept. . .This appointment was basically an informational one, though they did give Bob a thorough exam, to make sure there were no specific concerns or anything suspicious or out-of-whack. We'll be checking in with this team on a regular basis—as frequently as we want, we're told, but certainly at least bi-weekly—since Bob's condition can take a turn for the worse in no time, as history has proven time and again, so the goal is to stay on top of things. I told these docs, as I told the ones in the hospital, that from here on out, I will be pointing out every hangnail, every bruise, every little sign and symptom that seems out of the ordinary (though, what is ordinary, with Bob's situation?), so get used to it.

Tomorrow, we meet with oncology, as a follow-up to the most recent hospitalization, and to really start talking about where do we go from here. Our plan, upon talking to the primary care docs yesterday, is to take this time that Bob needs to recover, to talk to as many doctors and key players as we can, about the options of Bob's treatments, the pros and cons, the outcomes, the potential risks, do they outweigh the benefits (or vice versa) . . . really try to collect as much information as we can about what his choices going forward are. Next week, we meet with cardiology for sure, not sure if anyone else is on the schedule yet.

I weave my time between two worlds, one where I'm with Bob, helping him however I can, going to doctor's appointments, or ER visits, hospital stays, pharmacy runs . . . living in a house filled with constant reminders of this unwanted intruder in our lives, table full of pill bottles, fridge full of Ensure, a cane in the corner, sofa-turned-bed . . . the other, where I join my sisters and my mom to help plan Gretchen's wedding, or meet a friend for lunch, head to Target or the grocery store . . . I laugh at something funny and suddenly, can't help but think how long it's been since I've heard Bob laugh a real, hearty belly laugh. . . I meet my sister down in Minneapolis to help her pick out flowers for the wedding, and ask Bob fourteen times if he's okay with me going, until he snaps, "You keep asking me—just go, dammit!" I am flooded with guilt, leaving him alone, and call him several times while I'm gone. Many times, he just doesn't answer, which fills me with dread, so I call the home line, and when he answers, I know I've wakened him by his slow, slurred voice.

This cancer in our lives, is never far from my side. Like a prison guard, it's beside me, moving with me as I move through my days, stopping when I stop, running when I pick up speed. It sleeps in my bed with me, hops in the car when I head out to run errands. It will escort me to my sister's wedding, even as I laugh and chat with guests, and be my partner on the dance floor. I say all this not to grasp for pity or sympathy. I say it because it is all I know. But to say all that says nothing, means nothing, really, because I am not the one with cancer.

I'm hoping upon hope that Bob can attend Gretchen and Brian's wedding, even if it's just for the ceremony. Penny and Jim will be up, so they can take him home when he's had enough. I know it would make Gretchen's day, to see him there. But we take each day one at a time. Saturday is a day and a half away. Too far in the future to be making any plans.


Monday, June 21, 2010

Quiet morning, haircuts and regurgitated girlie things . . .

Woke up this morning to go peek at Bob and nearly stepped on a regurgitated tampon in middle of the living room rug. (Insert collective reader gagging here.) See, a few days ago—week ago? Two weeks? don't remember—Rocco had slipped into the bathroom when I had my back turned, snagged the tasty tidbit out of the trash and dashed under the coffee table with his treasure clamped tight in his mouth. He actually snarled and snapped at me when I tried to pry it from his jaws, so I just walked away, hands in the air. Fine, you little b&st@rd, I told him, go ahead and eat it. I don't have time for this shit. . . and have worried about it since, thinking it'd end up blocking his intestines, prevent him from eating, pooping, or doing anything and one day, he'd just die on me, death by tampon. Funny thing thing is, it prevented none of that. He ate just fine. Pooped just fine. Drank just fine. Has been crazy as ever. Made me wonder if perhaps I just imagined the whole thing. From what I found this morning, obviously not. At least now I don't have to worry about him dying by tampon choking. Note to self: close the damn bathroom door . . .

Our first full day home from the hospital as been so nice, but I have to continually remind myself to breathe . . . Bob said he slept through the night quite well (got up once—I bolted out of bed when I heard him, ran out to the living room to see what was going on. "Ummmm. . . just changing positions, Jen . . . go back to bed," he told me. . . ) He had a nice breakfast, rested a bit after that, then we took a walk down our road, to the "t" and back again, one of our neighbors popped her head out the front door and hollered, "Welcome home, Bob! Now make sure your stay there for a while!"

He's done well with eating, resting and keeping active all day, without overdoing it . . . up and down stairs, "reacquainting" himself with the house, his office, the checkbook, he said . . . we had to jump the Subaru (haven't driven it in over a week), figured it has a bad battery, so Bob had his dad on the phone for some sage fatherly advice about cars and batteries and chargers and all. . . I told him it almost felt normal, like our old life was back, even just a little bit, with him moving about the house, doing some of the things he used to do, which seems so long ago that he has been able to do any of it, I was out pulling weeds in the yard, walking the dogs, checking in on him now and then.
Bob even got a haircut out on the deck today—I had trimmed it up, as it was starting to grow in since he hasn't had chemo in a long time; had lots of wispy, spindly strands that needed trimming . . . I never thought he would look good with such short hair, but I've been proven wrong. I love it! See for yourselves . . .

One of his docs from this most recent hospitalization called just to check in, see how things are going . . . we have at least a few appointments this week, one with the new primary doc who will be overseeing all of Bob's care, one with oncology. . . supposed to be seeing cardiology within the week . . . surgery still isn't even in the conversation, given the events of the past few weeks. . .

Dinner on the deck again tonight, steak stir fry with lots of veggies and brown rice . . .now, we're settling down, Dirty Dancing on AMC, candles glowing instead of lights in the house . . . the hardest thing is to truly relax, enjoy the moment, given the events of the past weeks, months . . . the hardest thing, to put the guards down and simply be . . . we're trying, but god is it hard . . .



Sunday, June 20, 2010

Happiness is . . . Bob home . . .

A chorus of angels give to Bob from my Auntie Patty's own personal collection . . .
Brought Bob home this afternoon, after another five day stint at the U . . . it's so wonderful to have him back home, I can't even tell you . . . . Even though he spent much of the day resting while I flitted about the house, I felt so much better having him home with us, had so much more energy to do things, more motivation than I have in a very long time . . . hung out laundry, went grocery shopping, to Target, back home, made a nice steak dinner for us (we ate "al fresco,"out on the deck, it was just lovely tonight—no bugs, no humidity, no wind, Bob sat for quite a while outside with me. . . wish I had taken a picture. Next time, for sure . . .)

I miss him so much when he's not here. I don't do much of anything except cry. I cry when I walk the dogs (hence, dark glasses when I'm out walking the dogs, even on cloudy days . . .like some kind of diva), I cry when driving to work (when I worked, that is), I cry when doing laundry, when mowing the lawn, when vacuuming . . . tears are so annoying, they get in the way, make it hard to do much of anything, so I just give up on most everything else and simply cry. I pull it together enough when I'm at the hospital, so I can talk to doctors without looking like a complete lunatic, but even then, I cry some.

This most recent discharge, though, we have a new game plan. We're given a new contact person, a primary care doctor, who is to be our main go-to doc, to check in with on a regular basis (I'm pushing for weekly—we'll see), to try to stay ahead of any issues before they snowball out of control, as they did once again this week. It's easy for me to get pissed off, blame all kinds of people for what has happened to Bob, what continues to happen to him, what may happen in the future, but the hard truth is that his health is incredibly fragile right now, and truthfully, that is no one's fault. He's a delicate balance that can get tipped the wrong way with the weight of a speck of dust, the flutter of a moth's wing . . . short of a crystal ball, there's no way to predict, anticipate, know if and when things may take a turn . . . but blaming helps channel my energy, reign it in and focuses it on something instead of everything and does seem to get things done that maybe wouldn't otherwise . . .

When Bob was admitted this time, I once again, let loose on the first doc who came to see him. I (crying, of course), told this poor guy (who just happened to be on staff when Bob was admitted to the ICU on Wed; hadn't even met him before), that I can't help but think this could have been avoided—that there were so many things going on with Bob at his last discharge, things we told nurses, docs, etc. all along the way, things I told his oncologist on Tuesday, but no one seemed to see the forest for the trees, to be able to put all the pieces together—so many specialists that his care seems to get so fragmented, so piece-meal. . . why isn't there one person in charge at all times, no matter what is going on, we need someone heading the show here, who can take all the fragmented pieces to Bob's care and put them together in a coherent picture, who's astute enough to look a the various people caring for him, all the tests, the medications, the signs and symptoms, and maybe catch something that doesn't work, doesn't fit . . . right now, I feel I've had to be that person and I'm terribly sorely, pathetically under-qualified . . . I'm not a doctor and don't even play one on TV . . .

I know Bob really wanted to go home last Sunday (he'd been in the hospital 2 freakin' weeks, don't blame him), and he did show many signs of improvement, and I get it that home is the best place to fully recover, but there were so many ingredients present, and given his history, that blended together to create the perfect storm: severe diarrhea, not being able to eat because of the thrush in his mouth, being on Lasix for the fluid retention . . .

What happened is that, very quickly after discharge last Sunday, Bob ended up severely dehydrated (technically, a condition called "hypovolemia" which means low blood volume . . . many things can cause this; in Bob's case, it appears to be the dehydration from all the factors leading up to it), which can happen rapidly for someone in his condition, and can lead to serious issues—organ failure, coma, death . . .

Initially, an echocardiogram was done on his heart, to see if his heart wasn't functioning well enough to get enough fluid pumping through the body. Gratefully, the echo showed that his heart is recovering remarkably, so the next theory is that he was simply dehydrated to a dangerous point due to the diarrhea, the lack of appetite, the Lasix . . . but we're told it's easily rectified with IV fluids. Because his blood pressure was so low, he ended up in ICU for a day and a half, until it stabilized and could be moved back up to 7D, his home turf. Up there, he was continually monitored, given fluids as needed until his blood pressure remained at an acceptable level without the need for IV fluids, and remained there for another few days until it was clear he was eating/drinking/maintaining on his own.

He discovered the hospital cafeteria during this stay, which has a much larger selection of grub than the room service menu. He felt well enough to wander up to the caf on his own a few times, grabbed a personal pizza for dinner one night, a snack here and there, lunch another day (I'd left him a few bucks in case he wanted to do so). As each day passed, I saw amazing progress in Bob's condition. He's mentally back in all ways (I am not kidding when, in the two weeks following the most recent heart attack, I feared he'd suffered brain damage . . . none of that mental fog/confusion, etc. is evident anymore), his voice is stronger, his appetite is better, he has better energy . . . he still tires quickly, but doesn't fall asleep mid-sentence. And when he sleeps, he sleeps. Deep, restful, restorative sleep. Good sleep. His pain is still present, always present, but he's not on nearly the amount of pain meds he was on even the week before his surgery. No one can really explain that one . . . it may be from the embolizing of the tumor's blood supply, but they can't say for certain.

So, even though we're both nervous about him being discharged again (given the history . . . ) but at the same time, so very grateful to have him home. We have many appointments set up for this coming week and the next, lots of stuff to discuss, sort through, process, work on in the coming days . . . (car on the right seen in the parking lot at the U of M . . .)

Wednesday, June 16, 2010

Revolving door back into the hospital . . .

Before I dig into this latest post, let me start by pointing out some amazing, no, truly miraculous things about Bob's latest recovery: his heart is looking great, kidneys and liver also checking in at great, his mind is sharp as a tack again—no signs of the terrifying stuff going on last week (I was so convinced he'd suffered brain damage from the heart attack, given the crazy behaviors going on—I mean, when he asked me what to do with all the baby chickens running around his room . . . well, can you blame me?). His pain is being managed very well—as well as it's been in a very long time . . .

Having said all that, Bob's back in the hospital again, three days after being discharged. If it isn't one thing, it's another . . . seems like he's traded one set of symptoms for a whole new set, overnight . . . he was really chomping to leave Sunday, seemed to be feeling, looking and sounding so much better, rebounding astoundingly well, in spite of the latest crisis. When he got home, he slept most of Monday, more sleep in one day than he's gotten in months. I chalked it up to the sleep deprivation he experienced while in the hospital during his two-week gig, and reveled in the sight of him deep in slumber on the sofa (king that he is . . .).

Then Tuesday came, he said he's feeling very weak, light-headed, lethargic. We had an appointment with his oncologist in the afternoon, so I called his cardiologist office, hoping to piggy-back an appointment either before or after the oncologist, as I was thinking this may be more of a cardiology issue than anything. His cardiologist wasn't in but his nurse said it sounded like Bob should be admitted, and that maybe his oncologist would do that. If not, we were to come into the cardiovascular clinic right away the next day and she'd make sure to get us in.

We met with Bob's oncologist in the afternoon; not much he could tell us on his end. He said there's not a whole lot more he can do for Bob (as if he's done much of anything other than damn near kill him with chemo . . . no, no, no, I have to push that train of thought out of my mind. Not his fault. Not his fault. Not his fault. . . Funny, how in tragedy, we often try to find, need to find someone to blame. As though by channeling our crazy, wild, out-of-control anger, grief, sadness, frustration, insanity full force onto one source, one cause, that will somehow help. It doesn't, I'm here to tell you. Don't know what the alternative is yet, just know that blame is ugly, corrosive, counter-productive and takes precious energy from things that need it more . . .breathe in, breathe out, move on. . . ).

Bob's oncologist said that he needs to fully recover from this latest heart incident and then needs to carefully weigh all the risks and benefits of treating the tumor by talking to all the parties involved: cardiology, orthopedic oncology, etc. Surgery is fraught with risks, long-term, life-altering effects . . . no surgery is fraught with a whole other set of issues I can't even begin to process right now . . .

We told him about Bob's recent-developing weakness, fatigue, diarrhea, sodium/Lasix issues, thrush infection on his tongue, more weight loss (back down to 105, dammit all to hell . . .), etc. Bob's vitals seemed okay, somewhat lowered blood pressure—89/57—but he's on heart meds, so that's to be expected. Doc S said those were really cardiology issues. I suggested hosptialization; Bob said he didn't want to be hospitalized (don't blame him, fresh off a two-week gig), that we have a cardiology appt. in the a.m., and he could wait to see what they say. We were sent on our merry way with instructions to revisit oncology when the heart issue is better under control.

This morning, despite a good night's sleep, Bob is very weak, can barely sit up, much less stand, is dizzy and nearly falls over when trying to make it from the couch to the bathroom to wash up and change clothes before our appointment. I encourage him to eat a little something for breakfast, take his meds and then we're off, down 94 for the umteenmillionth time. Effining construction slows our commute to a 45 minute drive, though we still arrive at the U at just after 8. Upon arrival in the clinic, Bob's cardiologist's nurse meets us in the reception room and tells us, "Just so you know, Doc B is probably going to have Bob admitted, given what you've told us is going on, and his most recent cardiac incident." ER admission is what happens when your blood pressure is 59/43 and you weigh 105 lbs.. . .

Doc B says ER is a quick way to get IV fluids and other things going quickly without having to wait around for a room in the hospital. IV was started in the ER, and about an hour later, Bob was wheeled up to ICU, as his blood pressure continued to wallow in those dangerously low numbers. An echo was done once again to see if a poorly functioning heart was causing the low bp. After reading the results, we're told that gratefully, Bob's heart appears to be functioning well since the last heart attack, improving all the time. The low bp is due to severe dehydration, likely caused by all the crazy shit going on, literally and figuratively. Severe diarrhea from the round of antibiotics over the past two weeks, use of Lasix for the water retention, Bob's inability to eat much because of the thrush covering his tongue (which is very painful and makes even drinking extremely uncomfortable). . .

See, peeps, once again, it's shit like this that, drives me out of my freaking mind . . . Yes, in hindsight it's all perfectly clear, but why the hell can't someone (i.e. other than me and his parents) look at Bob for the whole picture that he is, that all of this shit is totally, completely inextricable from each other . . . we mentioned back in the hospital, numerous times, about the diarrhea, about the water weight/retention, about the poor appetite . . . I am not a doctor, nor do I play one on TV but it's been shown time and time again that I have to be with Bob at all times, document, take notes of anything and everything that's going on with him and tell his doctors, over and over and over . . . do something about this!!!!

Spent the day telling docs over and over about the diarrhea, the thrush (which has lingered since his March heart attack), the water retention/Lasix . . . told them how alarmed I am, once again, at the severe weight loss (Do you want a dietitian to come in? we're asked. Again. NO! We KNOW what he needs to eat—he can't, because of the fungal infection covering the inside of his mouth! It's raw and burning and the medication he was given for home isn't doing the trick!)

Long story short, I've given my official "medical leave of absence" from work today. Right now, my full time job is caring for Bob.

Sunday, June 13, 2010

Back home . . . again . . .

Bob was discharged today and I'm at once ecstatic and terrified, as he is (maybe not quite terrified, but then again, he doesn't remember much of the traumatic stuff, which is a good thing) . . . trying not to let previous discharge experiences take over . . . Bob's been anxious to get home, but he definitely called the shots on this one—wanted to wait till today, until he felt comfortable that all things were going in the right direction, that he was showing strong signs of improving. Once again, I am simply astounded at his resiliency, his ability to rebound after such a horrific past two weeks. I'm beginning to lose track of which week was worse than the others, which is why I work hard at pushing those kinds of thoughts out of my mind. Takes a lot out of a girl . . .

I know he's glad to be home, but still in "getting settled" mode. Hasn't had much of an appetite, and I've already apologized in advance for the nagging I'll do on that subject. He's back down to 115 lbs (much of the weight loss was water weight, from the Lasix he's now on), so we have to do everything we can to keep the pounds on him. Made one of my "famous" Ensure malts for him; he ate maybe 1/3 of it (it was a big malt) . . . saved the rest for another day, maybe tomorrow.

A flurry of follow-up appointments are in the process of being scheduled over the course of the next two weeks: oncology, cardiology, orthopedic surgeon, palliative care, neuropsych evaluation, though I'm thinking that last one might be ix-nayed, as both Bob and I feel strongly that his mental capacities have been returning every day. The confusion, the hallucinations, the personality snafus are but a memory—albeit, a vivid one—and his EEG came back with no signs of anything funky going on up there. We'll see . . .

Just wanted to give a quick update about the B-man ("What?!? JEN giving a QUICK update?! What's this world coming to????" Not to worry, dear followers. Maybe more tomorrow. Or maybe not.) and will now head to bed, because thanks to WebMD's Symptom Checker, I've turned into a hypochondriac and now diagnosed myself with strep throat and may be trotting into Urgent care in the a.m. No sense suffering (and putting Bob's health in jeopardy) needlessly like I did last time . . . and seriously, can we just say, WTF? First bronchitis, now possibly strep? I NEVER get sick . . . honestly, it had to be nearly 20 years since I last had a round of antibiotics . . . clorox wipes abound in the house right now, as I'm so scared of getting Bob sick. . . I should have grabbed a box of those face masks found on every corner of the hospital, too. Dammit.

I've been seriously contemplating quitting my job and finding something that's more flexible (wait, that should be the other way around: find the job first before quitting the one I already have), perhaps a little more mindless, a kind of job I can just go to, do my work and leave. Kind of hard to do that with my current position . . . we live this crisis all day, every day and to go to work and have to relive it over and over, with each client, is more than I can bear. I love my clients, have known most for so many years—more like family and friends than "just" clients—so of course they're going to be concerned and ask about Bob . . . but, first of all, how do I even begin to give a quick little synopsis of what he's been going through? Ain't possible, but at the same time, it's nearly impossible to not talk about him . . . and quite honestly, I'm so preoccupied with all that's gone on and continues to go on with Bob . . . I'm reaching that point where my attitude is dangerously careering toward, "What? You don't like the haircut? Deal with it. It's hair, for god's sake. Not cancer . . . " Not a good place to be, my friends, if you're the one beneath my shears . . .

Second, no, actually, this should be firstly, as it's the most important: I need to be available for Bob easily, to take him to appointments, talk to his doctors, to be with him, there for him at a moment's notice, which is so hard with my appointment-based business . . . if this journey hasn't already driven that point home, these past few weeks have solidified it. I haven't worked in two weeks (just can't figure out a way to telecommute as a hairdresser . . .), and am sick at the very thought of going in on Tuesday . . . we have some very serious decisions to be made over the course of the next few weeks, many very important appointments that I have to be with Bob . . . it's not like he's having his appendix taken out. It's a serious predicament, with a serious surgery pending, with serious implications . . . no matter what Bob ultimately decides to do, surgery or no surgery, his life will never be what it once was, it will be altered dramatically, incomprehensibly, at this point . . . these things are not to be decided lightly.

I can't just up and quit, sooooooooo . . . .if anyone just happens to know of a job that I could do on my laptop/phone, at any time, anywhere, in the comfort of my own home, or the family room at the U of M oncology unit, or in the ER, or waiting room of the Masonic cancer clinic, please let me know and I'll fire off a cover letter and resume . . . even in the midst of a crisis, I'm a conscientious, hard worker, have a strong MN work ethic, am pretty quick on the uptake, am flexible . . . and can do fabulous hair on the side, at a steep discount, if you don't mind kneeling over my bathroom tub . . . ridiculous, I know, but hey, doesn't hurt to ask . . . and in case anyone hasn't noticed, I kinda got over caring about looking sane a long time ago . . .

Anyhow, g'night to all. LOVE! J & B



Friday, June 11, 2010

Neverending story . . .

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

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

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

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

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

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

Tuesday, June 8, 2010

Diarrhea of the keyboard . . .

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

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

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

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

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

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

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

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


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




Monday, June 7, 2010

One step forward, two back . . .

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, June 5, 2010

Every day, little improvements . . .

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

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

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

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

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

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

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

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