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 . . .