Friday, April 30, 2010

Home Sweet Home, a day early!

(a few pics of our cute li'l home, a nice change of scenery for Bob, from a hospital setting . . .)














Bob was discharged from the TCU today instead of tomorrow! Yeeeeehaaahhhh!!!! It was at his request—he heard he was going to be getting a roommate, and immediately asked if he could please just be set free today instead of waiting till the morning? Funny . . . Bob used to to like people . . . he called to tell me the news I was on my way to the TCU after work; they still had to fill some prescriptions and finalize his discharge, so I buzzed up to the bank and then to the hospital.

Penny and Jim had been with him during the day and took off for home shortly after I arrived, to get ahead of the rush hour traffic. We had to wait over an hour before Bob was officially discharged; in the meantime, his roommate was moved in, an older gentleman who was here to rehab after knee replacement surgery, I gleaned from the totally unprivate conversation between him and his nurse 155 lbs, 5 feet 8 inches, has not been out of the country in the past three years, is up to date on TB, flu and pneumonia shots . . . yup, heard it all. So much for patient confidentiality in a shared room. . . finally, we were escorted down to the Jeep with a nurse, who bid Bob continued success on his journey . . .

A light rain anointed us while we loaded the truck with Bob's belongings, then Bob in the back, and headed down I94 toward home. The sprinkles morphed into heavy downpour the closer we got to home. Bob slept most of the way, hopefully lulled to sleep by the pattering of rain, the rhythm of wipers. Traffic was thick, so the drive was slow (I don't quite have the traffic patterns figured out yet coming from the west, since most of my rush hour driving has been in the a.m.), so he was able to rest quite a while in the car.

Our fruit trees are in full bloom, and as I pulled into the driveway, we were showered with a fluttering of petals, pale pink and deep fuschia, swirling off the trees, onto the ground. The trees in our yard are lush and green, a turkey strutted across the yard and into the woods. A lovely homecoming greeting . . . I could see Rocco standing alert at the patio door, and as soon as we walked in the door, the dogs started arguing about who would get to greet Bob first. Gaia, even in her old arthritic condition, won with a ferocious, definitive snap. Rocco had to settle for second place, me.

It's so good to have Bob back home. Doggies missed him, I missed him immensely. It's been a
long two weeks that he's been gone . . . the trees are so green, so full already, hostas are filling out . . . I'm hoping that these next few weeks will be so uneventful that I won't have much to write in here. We've got a lot of homework to do—our mission is to work on bulking up Bob's food/nutrition intake, keep an eye on the pain and keep that under control, to get outside as much as we can for walks and other strength/endurance activities, and right now, as important, work on healing and easing his mind along with his body . . .

Bob's been moving kind of tentatively around the house tonight; said it feels strange to be home, like he's out of place, not sure what to do. I told him it's okay, it's been a few weeks since he's been here, and a lot has happened in that time . . . need to take some time to get re-acquainted, re-adjusted, got some things to figure out, work out . . . I haven't grocery shopped in at least two weeks so as a treat (and because it was too late to head out to for groceries), I called in a small Savoy pizza for dinner. Funny how we used to order a large and Bob would polish off a good 1/2 of it . . . when the pizza arrived, it looked pathetically small, like a personal pizza, but between the two of us these days, it was plenty; enough for leftovers, even. Bob spent a good part of the evening organizing his medications, doing laundry, resting. I made him an Ensure ice cream malt after dinner, which he polished of, in spite of saying the pizza filled him up.

As I said, I hope to keep these entries quite lean these next few weeks. Maybe have a guest contributor, for a few entries, if he's feeling up to it. . . surgery is pushed back to the last week of May. Standard protocol for putting a stent in—4-6 weeks of Plavix and aspirin. That, and many surgeons have to be rounded up for the tumor surgery, so lots of schedules have to be coordinated. In the meantime, Bob has a number of pre-op appointments coming up: oncology and cardiology followups, a pre-surgery CT scan, who knows what else.

I really feel this past week has finally put him back on track. I know better than to say it'll be smooth sailing, but at least now I feel a little better armed with names and resources to contact for various services. Bob got amazing care in the TCU—all of his nurses were very compassionate, kind and attentive. The PT and OT staff really tailored his programs to strengthening and endurance for the upcoming surgery; dietary staff did a great job trying to push the food, to up his caloric intake. He even had a few visitors—our friend, Wanda, his uncle Phil and aunt Connie . . . does his spirits good to get those connections to the "outside" world . . .Every time Bob went for a walk, someone stopped him in the hall and told him how great he was looking, how far he'd already come in such a short time. Even people who didn't work directly with Bob told him this, and I have to agree. I've seen many glimmers of my "old" Bob back—more energy, stronger voice, glimpses of his ol' take-charge attitude. All good signs . . .

He's sleeping soundly now on the sofa, and my eyes are having a helluva time staying open, so time to close again. Peace, love, and home sweet home, all! Love!

Monday, April 26, 2010

New digs, for now . . .

Sorry, sorry, sorry I haven't written in a while; these past few weeks have kicked my butt and I just think it's all finally caught up on me—started this blog a few days ago, but just haven't been able to finish it . . . has been a full-time job, getting Bob all the help he needs right now, and continues to be work, to make sure he's getting the appropriate help lined up down the road, as we journey on toward his surgery. . .have been so tired when I get home, and overwhelmed at where to start writing, that I just give up. Rest assured, loved ones, that Bob is doing so well where he is right now. He's getting stronger, gaining weight, getting that ol' "Bob Spirit" we all know and love back in full force. Yea!

We got Bob all settled at the Fairview Transitional Care Unit over the weekend, which is on the west bank campus (as opposed to the U of MN hospital where Bob has been for most of this, on the east bank). Lotta mixed feelings about this step, from both sides, his and mine. We both agree that there needed to be a stepping stone, a bridge, between the hospital and being discharged back home after the last hospital stay, but whether or not this was the answer remains to be seen. Then again, most of my apprehension stemmed from the fact that Bob was admitted on the weekend, when staffing and "happenings" are lighter—no real focus or direction to what the plan is. . . the weekdays prove to be a totally different story altogether. . .so much action going on that there should be a flippin' revolving door in Bob's room—so many therapists, social workers, nurses, doctors, anyone and everyone who might have reason to meet with Bob while he's staying at the TCU coming and going. It's like the Oval Office in room 424 . . .

Bob has a double room, but no roommate, which is great (don't need to expound on why, right, peeps?! But, in case you've forgotten, does the word testicles ring a bell??), and I don't think
they'll put anyone in his room for the duration. The unit has somewhat of a nursing home/psych ward feel to it—most of the patients appear to be in far worse shape than Bob. Bob had a few OT and PT sessions over the weekend, and each therapist has been very surprised at how strong and able-bodied Bob is, even in his weakened state. They said he appears very independent, doesn't really need any assistance or adaptive measures for daily living, but all agree that this stay is essential to help build his strength and endurance back up, in light of the pending surgery, as well as dietary/nutritional guidance. Blood pressure has also been an issue, as have the anxiety attacks and overall general anxious feelings Bob's been struggling with in the past few weeks since the heart attack. And to start to address some of the mental stuff going on, the endless cycle of anxiety, and possible depression setting in . . .(pic to the right is Bob tucked in for the night. Just for the record, so he doesn't get beat up on the playground, he doesn't really sleep with Taz—I added it for effect . . . kinda cute, huh?)

My feelings are that the whole mental piece for Bob has largely been ignored throughout this ordeal. Six months and counting . . . well, maybe not ignored, but certainly pushed to the side, since some pretty serious physical issues have taken precedence. Then again, up until the heart attack, I've been amazed and in awe of how "together" Bob has been through all of this. But, in my book the mental goes along with the physical—they're inextricable, each is dependent on the other—with physical challenges comes mental ones, and vice-versa. Can't have one without the other, in a true, holistic approach.

Bob has been through so much, more than any of us will probably ever see in our collective lifetimes. I see it all starting to affect him greatly, and see that it's all a great big swirling, tangled mess of physical, emotional, mental anguish. . . As such, every, and I'm not kidding when I say "every," medical personnel who has come in to see Bob gets the third degree from, the question of, "We know what needs to be done physically to get Bob back on track, but hat can you do to address the mental/emotional impact of what he's gone through in the past month or so . . ." Some offer assistance and give us contacts or directions to head, others kinda give us blank stares, with no answer. . .

Bob is a very in-control person, a take-charge kind of guy. He's a planner. (Yet another example of our differences: I fly by the seat of my pants, I "wing it," if you will; Bob likes to "plan to be spontaneous,"as he calls it.) However, there has been nothing—at all—predictable, reliable, certain, in this cancer journey . . . despite, in spite, of trying to reign it in, he's yanked and jerked in every direction, sometimes all at the same time . . . anything and everything that could possible go wrong has, and then some . . . right now, in so many ways, Bob's life is horrifically out of his control and we can't help but think, "What else? What else can he possibly be hit with? Just when we think he's been through the worst of it . . ." What I witness is Bob desperately trying to regain some of the neat, orderly ways of his old life. Even in his weakened, often-medicated state, if it means that he needs to track his medications, his blood pressure, his heart rate on a notebook at his bedside, questioning the nurses who enter his room . . . Even in this state, I told Bob that he could run a multi-million dollar corporation. Even cancer, even a heart attack hasn't rob him of that spirit.

I'd bet my last dollars that there is no one else on this floor who tracks their days like Bob does, who questions nurses and other medical personnel about what they're doing, why they're doing it, didn't they do that 45 minutes ago already, or why didn't they come in when he buzzed them 1/2 hour ago? But that need for control has become almost a fault, to where it's becoming an obsession and is interfering with his treatments, his going forward, his healing. He needs someone to sit with him and reassure him that right now, he's okay, that he's getting stronger, that things are not in a critical state, that he needs to let go and trust what's happening right now, is okay, is part of the course . . .someone who understands the experiences of a cancer survivor.

Bob occasionally talks about biofeedback experiences he had back when he was a kid, going through chemo and radiation the first time around. He got so sick from the chemo—during the 130 mile drive back to St. James from the Mayo, he'd alternate between the two ice cream buckets they kept in the car, to puke in—endless vomiting, weakness, dehydration, etc. lots of issues he's currently dealing with . . at some point, someone at the Mayo suggested this "new" technique of biofeedback (this was back in the 70's, when any alternative medicine was, at best, likely scoffed at, but the Mayo was and is cutting edge . . . ). Miraculously, Bob took to it effortlessly. It involved hooking him up to machines that recorded his vitals: heart rate, blood pressure, body temperature, etc., and with those scientific tools and data, Bob was then shown mental techniques that he could employ to help calm himself, ease the nausea, the heart rate, the body temperature. As he puts it, he was the King of Biofeedback, back then.

The first night Bob was in the Transitional Care Unit (Friday night), he had an anxiety attack. I'd been trying to call him and he wasn't answering, neither on his cell phone nor on his room phone. So, I called the front desk. Who gave him my message and then called me back a minute or so later to tell me Bob doesn't want to talk to me because he's worried that I'm freaked out and that'll make him more worried . . . endless cycle . . . but this nurse also asked if Bob has ever tried a treatment called biofeedback, that maybe that would benefit him while he was at TCU. . .

So after that conversation, every medical professional who's come in to see Bob over the weekend got the low-down from me. That he's riddled with anxiety, and rightly so, but we need some help here, an endless cycle that needs to be addressed . . some knew what I was talking about; others didn't but told us they would investigate further and get back to us. Kinda felt like a broken record, like a goofball, asking over and over, but in my heart, I felt this was a huge piece in the puzzle to help Bob . . . but over the course of the past few days, Bob's been given some direction, some names of people who can help him in this area of treatment. We feel, finally, we're getting more pieces together.

Over the weekend, a good friend of ours, Wanda, was in MN and wanted to see Bob while she was in town. She and her husband are originally from MN but have lived in Alaska for over 15 years. Wanda flew into MN to help take care of a family issue, and was spending the night in the Twin Cities before flying back to Anchorage. I picked her up at her hotel, we arrived at Bob's room early afternoon, and stayed with him for several hours. Bob slept most of the time while Wanda and I caught up. I wish I had taken a pic of them together . . . dang it! Wanda is a very recent breast cancer survivor, and her husband, Dan, the caretaker extraordinaire. Dan was also in MN, but not long enough to be able to swing up to see Bob. We told him that we'd see him next on our Greyhound excursion to Memphis, as Dan and Wanda now own property near Nashville and are planning to move back to the mainland this summer.

The visit did Bob's spirits good, even though he couldn't stay awake for the entire time. Eventually, I took Wanda back to her hotel after having dinner at Khan's (we closed the place down, wild women that we are . . .Wanda got a cool fortune in her cookie, it read: You tend to rais the spirits of those around you. True, so very true! Mine said, Promote literacy. Buy a box of fortune cookies today. WTF?!? TOTAL rip-off!!! "Umm, scuse me, waitress? Could I get a re-do on the fortune cookie here? This ain't a fortune, it's an advertisment!" She brought another one, and was redeemed: Believe in yourself and so will others. . . spent a good few hours a the restaurant with Wanda, talking, catching up, saying our good-byes way too soon . . .

They've been keeping Bob very busy this week in the ol' TCU, and it's only Wednesday—lots of PT, OT, dietitians, . . . the kitchen keeps sending extra food to him between meals—sandwiches, ice cream, etc.—to the point where Bob had to ask them to stop, as he just couldn't keep up, and the stuff was starting to stockpile in the overflow fridges on the unit. There's a kitchenette on the floor, and he can go help himself to snacks whenever he wants; I saw on his notes that he's been more than generous with the ice cream cups. They started him on IV fluids on Monday, as he's been dehydrated and the doc said many of the symptoms he's experiencing can be the result of that. After being on the fluids for a few days, his anxiety is lessening, he feels more rested, less exhausted . . .His weight is up seven pounds, and last night, he sounded so strong, was moving about his room almost effortlessly. So, we're gaining ground, people!

(pic to the left is Bob learning the fine art of accessorizing . . . acutally, a safety belt used by PT and OT, to grab onto, just in case Bob falls during therapy)
Anyhow, I know a lot of this is disjointed, and repetitive as all hell, but just wanted to give an update but don't have time to edit, to let you know our SuperHero is making huge strides in rehab! Just what the doctor ordered (or didn't . . .) Also, incidentally, got a call from the Mayo clinic, from one of the docs who has been part of the long-term followup study Bob was a part of. I had contacted them several weeks ago, after Bob's heart attack, not really sure what I was looking for, if for no other reason than to let them know that a former patient of theirs was going through some awful crap as a result of his treatments, and maybe they'd want to know . . . and maybe shed some light from their point of view as to why this was happening, could it have been prevented, what do they recommend their patients do?She was amazing to talk to, and in another blog, I'll have to expound, but i really gotta get going to work, so good luck reading all this . . .

Peace, Love and Rehab to all!

Thursday, April 22, 2010

Little victories—no, make that miracles—in the midst of chaos . . .

(pic to the left is Bob, with my sister, Jill, and her li'l peanut, Amelia, who came to visit Bob over the weekend, and deliver a quilt Amelia had bid on at a school auction for Uncle Bob . . .)

Thursday, April 22, 2010
Bob had his stent in yesterday, and will be heading to a transitional care unit on the Fairview campus of the hospital tomorrow, for an extended stay of rehabilitation, so he can work on getting stronger, put some weight on, get some one-on-one assistance to get him as healthy (relatively speaking) as possible before his pending tumor surgery. I wish I could say that outcome happened as easily as typing it, but it only came about because, once again, I had to pull the hysterical wife act—to beg, cry and threaten to chain myself on top of Bob and his hospital bed until someone do something to help Bob in the interim, while we await for the big surgery on his tumor. . .

We all (Bob, his parents and I, and Nancy, too, via texts and phone calls) had been discussing what would happen next, as there had been some talk about discharging Bob today, the day after the stent was placed. I said, not if I have anything to say about it. He's weak, he's emaciated and continues to lose weight, his pain is not managed to a tolerable degree, the panic attacks he's been having have not abated, he has a huge surgery looming in the not-so-distant future, and we need to get Bob as healthy as possible for this very stressful, critical surgery. But they want to send him home today. Not happening. So far, no one had given us any acceptable options from this point out, as far as Bob's health and "the big picture" is concerned, and he's not going home from the hospital until we have that in place.

Penny said, "Why can't there be something like a half-way house for a patient who needs more help and rehabilitation, maybe not as much as he might need in a hospital, but something more than just sending him home again?" On a wing and a prayer, till the next crisis . . . we've talked to doctors, we've talked to social workers, over and over, expressed concerns about issues we've faced and may potentially face, and how to avert them, and if there was such a service, such a facility, we hadn't been told about it.

We're told several times that Bob looks great from a cardiac standpoint; that the stent placement went well, that his heart looks great, and for that, we're eternally grateful and ecstatic, and are well aware how important this is in terms of his upcoming big surgery, a huge victory in this battle. But, overall, from a whole-istic standpoint, he is not well. This morning, Bob told me he's lost even more weight. With all he's eaten (relatively speaking, for Bob, since all this began) since he's been in the hospital this week, he's still losing weight. His pain in his leg was horrific last night (he hadn't gotten is mid-day doses of meds yesterday, due to the stent surgery), so it was several hours, once again, of playing catch-up. Blood pressure still not stable. He's weak, the med plan he was on has made him so lethargic and groggy he can barely keep his eyes open throughout the day, and we have no game plan for what to do, once he's discharged, once again. Clearly, what we've been advised to do at home since his heart attack is not working. Losing weight, panic attacks, unmanaged pain, blood pressure issues, weakness, lethargy, heading to the ER every other day is not an adequate after-care plan, in my book, and we're not going down that path again.

When I got to the hospital this morning, I found Bob awake but tired. He said they finally managed to get his leg pain under control last night, but basically knocked him out cold in the process. On the plus side, he did get 3-4 solid hours of sleep (drug-induced, likely). I wasn't there very long when Bob's palliative care doctor, Doc G.K., came in. We talked about the regimen of medications he's on, that a few have changed in the past day or so—a new nerve pain medication added, and dosages of the others tweaked—and that hopefully the new combination will affect the increased pain Bob's been experiencing. I told her that I did not want Bob going home until everything Bob has been dealing with since his heart attack was thoroughly addressed, which lead to our rather headed discussion about whether or not to discharge Bob today. I said absolutely not, that there are too many things that need to be addressed before he goes home, that I don't think going to the ER every other day is an acceptable plan of care, that there has to be something else that can be done to help him get better before surgery. She tells me that from a doctor's standpoint, Bob can dress himself, Bob can feed himself, he can get up and make a meal for himself, tend to his own personal cares—that doctors and therapists and insurance companies won't deem his situation as necessary for hospitalization.

I said, "He weighs 100 pounds, and continues to lose weight. He's weak, his pain isn't managed well, we're in the ER every other day with various and sundry issues. Bob is not safe to be at home alone right now—his parents help us immensely—they basically move in with us during the week to be with Bob while I go to work, but on the weekends, I feel like I can't even leave to get groceries because of what "might" happen . . . it takes 20 minutes for an ambulance to get to us . . . Bob's precarious health status is a stressful situation for all of us because so far, we've seen absolutely anything and everything that can go wrong has gone wrong in Bob's case, and I feel it's because so many issues with his overall care have not been addressed. We shouldn't be the ones to be making the call between 'is this a panic attack or heart attack?'—too much needs to come together in the next weeks before his big surgery, and some of that needs to come together in a care facility where Bob can be monitored closely until he's better . . ."

Shortly, we're joined by a team of oncologists and again, I repeat what I just said to Bob's palliative care doctor. I insist that Bob stay in the hospital at least a few more days, to gain weight, get stronger. "How sick does he have to get for someone to take this seriously," I plead, over and over. I'm ecstatic that his heart is recovering well, I tell them, but that's just one little piece to the picture. His weight continues to drop—when will his organs start giving out because of the stress of the the medical anorexia? They suggest a dietician—I interrupt, with exasperation. "We know what to do to help him gain weight—give him Ensure, give him calorie-dense foods, try smaller, more frequent meals instead of big ones, use other dietary supplements to add calories—we all of that, but it isn't working. He's losing weight despite that. He's been in such a drug-induced fog all week that he has no energy to get off the bed, much less to much-needed walking and other exercises to increase his strength. We know all of that, and it is not working. What's going on with him right now is beyond our scope. He needs professional help, now. He needed more help after his heart attack, but was just sent home, with a few little sessions with PT and OT in the hospital and a pat on the back. This time, that's not happening."

I "get" it, that Bob's not "sick enough" for the critical care of a hospital, but he's too sick to be home right now, and we've been given no other options, not even home health care, in the interim, to work on getting him better for the tumor surgery, and that's what I want. That's what Bob wants, it's what his parents, his sister, anyone who cares about him, wants for him. To end this cycle of ER trips and get a better grip on his health as we wait out the time between now and surgery.

I was so proud of myself for not dropping f-bombs left and right during that soliloquy (though I think I felt a trickle of blood running down the corner of my mouth, from biting my tongue so hard), but I was crying a lot and I know I kept repeating myself over and over: he is not safe, he is not well enough to go home right now but the only options we have are hospital or home, and I'll take hospital over home right now. That it took 20 minutes for an ambulance to get to our house the week before, that in the state he's in now, it's an enormous amount of stress for everyone—me, his parents, Bob—to have him home so soon. He has a huge surgery coming up and we need help here, people, to get him stronger, healthier, as well as we can get him for this major event. I felt very bad that I did all the talking for Bob and hardly let him speak for himself, but he did tell the doctors himself that he didn't want to go home right now, that he was afraid of repeating the same cycle of ER visits, hospital stays, etc., that he wants to do whatever can be done to help him gain weight, work on strengthening his weakened body . . .

Over and over, evidence of a freakin' anti-proactive system hard at work. . . Forget addressing the whole picture, forget trying to avert crisis—let's just send a very sick patient home and see what happens. Deal with stuff after the fact, rather than making an attempt to prevent them. Funny how the system seems to have no problem paying for endless trips to ER, countless hospital stays that could very well have been averted if a preventive plan had been in place . . . oh, silly me. That's hindsight, we can't predict the future, we can't say that Bob wouldn't have had all these problems if something else had been done . . .

The doctors kept trying to tell me that from a cardiac point of view, Bob is doing great, that the issues that brought him into the ER on Friday are resolved, and that there's no reason to keep him in the hospital any longer. I said, "well maybe not the hospital, but we need another option here." They suggest family, friends, to help with home care. I said, "Oh, sure, we have plenty of support for us, but see, most people work for a living. People can't just drop their lives and come live with us. And besides, right now, Bob's condition is far beyond the scope of what any lay person can do to help him. Right now, he needs medical assistance to get over some major hurdles. We know what to do, but we do not have the training, expertise to do this ourselves."

In the midst of this all, someone mentioned the TCU at Fairview. I looked at them. "What's that?" Oh, it's the transitional care unit at the Fairview campus, we're told, it's not a hospital—patients don't get the critical care that they do in the hospital—they have to be on the road to recovery—it's more of a rehabilitation unit, a bridge between the hospital and home . . . I should have dropped an f-bomb right there, with this revelation. Transitional Care Unit?! THAT'S EXACTLY WHAT I'VE BEEN DESCRIBING HERE, YOU EFFING IDIOTS!!!!!!! MY GOD!!! SUCH A FACILITY, SUCH SERVICES EXIST, BUT WE HAVEN'T BEEN TOLD ABOUT THIS UNTIL NOW???!!!?? We needed this right after the heart attack, you freaking morons! A guy undergoes 12 weeks of ass-kicking chemotherapy, then has a massive heart attack, and gets sent home two days later, no after-care plan offered . . . even though one exists . . .

But then, I'm told about the insurance quagmire that may prevent Bob from using the services—he can dress himself, he can feed himself, he can get around, slowly, yes, but he is ambulatory and based on what PT and OT have said about Bob, he moves about quite well . . . that, and previously, during other hospital stays, he's told therapists that he'd rather be at home than in the hospital, so that's what's been recorded in his charts, and that's what they'd base their decision to admit Bob to such a facility . . . well of course he'd want to go home, but did anyone discuss the option of the TCU to him? To me? A resounding NO!!!! I just kept pushing, pushing, pushing the point that Bob is in no state to go home right now. That he needs help, we all need more help than has been given, at this point. That no doctor would do surgery on him right now, given his current state of health. He's not going home. Period. The doctors said they would review Bob's situation, look into the TCU and get back to us as soon as they could.

A social worker was called in, and she explained the transitional care unit to us; that it's a bridge between hospital care and going home, that people with various conditions are there rehabilitating, getting therapies—PT, OT, dietary and other services—to help then get better before going home after a critical illness or injury. The University hospital has a facility connected to their Fairview campus, but several nursing homes around the Metro area offer such programs, and they refer to many of them, depending on each patient's insurance. She'd do the legwork of contacting Bob's insurance company, to get the ball rolling and would be in touch. I said, "Just for the record, we've spoken with several social workers throughout this whole ordeal, and not once, has anyone mentioned this option to us. It should have been done after Bob's heart attack, but not once. This is a very important service that all patients need to be aware of . . ." She gave a lame excuse—that maybe Bob was told about this when I wasn't around (which could be true, as he has been bombarded by countless hospital professionals all day and I can't be there 24/7 to intercept the information), or that it might not have been appropriate to recommend this to us earlier, or that, based on what PT and OT and others who've worked with Bob's recovery in the hospital have seen, they wouldn't have made the recommendation because he was doing so well while here. And that I shouldn't forget that I can ask for help from them any time. . . what the hell have I been doing all this time?! And, how do I ask for something that I don't even know exists? Isn't that their job. Again, I say, as I have over and over and over, "I don't do this for a living . . .I don't know what to ask, all I know is what I see, and what feel, and that's the best I can give you. . ."

But see, what these people in the medical arena fail to understand is Bob's level of determination. He possesses an immense level of strength, determination, drive, sheer will, fight instinct, than anyone I know or ever have known. Even while in the throes of debilitating chemotherapy, even in the wake of a massive heart attack, Bob survives, continues to surprise everyone with his quiet warrior spirit, so "they" label this as "doing great!" But, I am pretty confident that most of us could not have endured what Bob has endured, at least not as well as he is. His therapists see that he can walk, that he can take care of his personal needs, he can feed himself. To them, that's good enough. But, even SuperHeroes need a little help, a little rehabilitation, to refuel their SuperPowers. . .

As we're waiting in Bob's room to hear the "final word" on whether or not his insurance will approve the transitional care, he said, "Jen, look at this. I'm sitting on the bed. Sitting. And it
doesn't hurt much." I looked at him—he hasn't been able to do that in six months. Six months, people, and suddenly, after all that had gone on this morning, here he is, sitting on the edge of the bed. He got up and walked over to a harder chair in the room and sat down. He said, "This is okay, too. I mean, I couldn't do this indefinitely, but my pain is at a 2, and I could do this for quite a while." I had to take a picture of this, and I hope he doesn't mind that I post this here, but seriously, everyone, this is a huge freaking deal. I don't know if it's the new meds kicking in already or what, but whatever it is, we'll take it!!!

We'll post later more info about the transitional care unit, where it is, whether or not Bob can have visitors, etc. My guess is he'll be there at least a week, and will be a pretty intense rehab program (I like to say, "Bob is in rehab." Makes him sound like a bad boy of rock 'n' roll . . .), but it will be a more relaxed environment than a hospital setting. It'll be like going to a fat farm, only Bob'll be working on gaining rather than losing weight.


Tuesday, April 20, 2010

You do good work, peeps, you do good work . . .

Can please someone tell the creepy carny man to stop this whacked-out roller coaster ride and let me off? Pleeeeeeeeaaaaaaasssssseeeee????!!!!!??? I'm tired, I'm dizzy, I'm ready to throw up. . . I've lost count how many times we've been jerked this way and that, hurled to the bottom of the deepest, darkest valley only to be flung high into waves of hope, then yanked back down, thrown back up, over and over and over . . .

Yesterday was, without a doubt, the darkest day for me yet on this journey; at no other time have I felt so alone, felt so absolutely without hope, without direction, without anything to hold on to. . .and I don't even know how to sort through the events of the past 24 hours, to make a coherent path from what we started with yesterday to where we are today. Bear with me, peeps; quite honestly, this is more for my own clarification (and for Bob, for when he's coherent enough to want to sit down and wade through this), so there's gonna be a lot of info thrown out here, and lots of it may not make any sense . . . as it still doesn't to me . . .

When I got to the hospital yesterday morning, we're told that Bob can't have the biopsy on his kidney done because it's an invasive surgical procedure that would require an incision, and because Bob is on Plavix and blood thinner (whole aspirin these days), the risk of bleeding is too high—he'd have to be off the drugs for quite some time (a week or two) before they could do the biopsy, but his cardiologists say no way to taking him off Plavix and the aspirin this soon.

My first reaction was to this was, "Are you freakin' (see? I'm tryin' to clean it up, for your sake, folks) serious?!? It's no secret Bob's on blood thinners, and I'm pretty sure the people doing the biopsy are aware of potential issues that can interfere with this procedure, but they don't make that connection between Bob's condition and the biopsy until now??!!! AAAAARRRRGGGGHHHH!!!!!!!!!!!!!!!!" So, instead of the biopsy, Doc S ordered an MRI on Bob's kidney. The MRI is more detailed than a CT scan, but won't show exactly what the spot is; it'll just confirm that something is indeed there, which will then mean that the biopsy will have to be done, which would mean the blood thinners would have to be stopped, and everything delayed indefinitely. If the spot is more cancer, well, we couldn't even go there. If it was not more cancer, then we come back to other options. (I'm feeling the need for a flowchart here . . .)

Bob did have a bone scan, which was done to evaluate the condition of his bones (when I'd mentioned the neck pain Bob's been having that wasn't going away, they decided to add the bone scan, to check there for signs of metastasizing cancer there, as well). So, about midday, Doc S and his oncology fellow (a "fellow," in addition to this one being a guy, incidentally, is what they call an "oncologist in training," so to speak; a doctor who trains in the specialty of oncology at a university hospital. Kind of. I think.) arrive in Bob's room and start to give us the lowdown. Which is basically nothing. For all the talking, hemming, hawing, clearing of throats, we're really told nothing more than we already know. That Bob can't get the biopsy done. That he needs the MRI. That the MRI isn't a definitive tool, just confirming that there is or isn't something on Bob's kidney. That if there is, the picture looks pretty grim, but they'll have to do more tests to find out exactly what the spot is. That if there isn't, there are definitely more options, but still more crud to wallow through. That they really can't tell us anything else until the MRI results come in. So, take that, kids. See ya!

Bob's oncologist is the most difficult medical professional I've ever had to talk with. Any time I talk to him, I leave more confused than when I started. He offers scant explanations, he seemed to defer much of the situation to others—to the cardiologists, to the surgeon . . . I'm beginning to think that, other than pumping my husband full of toxic waste and nearly killing him in the process, he hasn't done much of anything for Bob. By his own admission, the tumor is growing. Slowly, but still, growing . . .they still want Bob's cardiologists to assess Bob and see if he's ready for surgery on the tumor. Cardiac clearance is another piece that needs to be in place in this big ol' puzzle.

So the gist of the day is, nothing can be decided until the freakin' MRI is done and the results are in. I spend the entire day at the U with Bob, ordering food for him, sitting with him while he ate, trying to help him find a tolerable position to eat (standing fatigues him quickly, can't sit; we did find that if he lay on his back and adjust the bed and bedside tray, he could eat quite comfortably in bed). We went on a walk around the wing of 7D, he slept much of the day. I kept replaying the conversation with the doctors and any way I tried to analyze the situation, I hit a brick wall. So if the spot shows up on the MRI, the biopsy will have to be done. Which means the Plavix and aspirin will have to be stopped. Which will screw up everything with cardiology. Which will screw up everything with oncology, because it will delay the tumor surgery indefinitely. And if it's found to be more cancer, well, then . . . but if it's not, well then . . .

I finally left Bob to get some rest around 7:30. When I got home, I had a knot in my stomach so tight, I thought I was going to throw up. I started cleaning the house. I made some salsa. I folded clothes. I fed the dogs. I kept replaying the conversation over and over. What did we learn? What do we know? Nothing. Absolutely nothing. I called my mom and started to explain the day, and as I did, I started crying. Heaving, hysterical, chest-heaving crying. I told her that this was the first day I truly felt hopeless with this situation, that no one gave me one iota of anything to grasp onto at that meeting . . . that I don't know what to do, that I had to hold it together with every fiber of my being in that meeting, because there was no way in hell I would let myself break down in front of Bob, but now that I'm home, I truly, honestly, have never felt so alone, and so so empty . . . my mom listed quietly, but I know she didn't know what to say, either. Eventually, we hung up, with me promising to call her when we heard any new news in the morning.

Then, I picked up the phone and called 7D and asked for Bob's nurse, Susan. Our rocker-chick nurse who adores Bob, whom Bob adores back, who gives him grief, takes such good care of him. I asked her if she could explain to me again exactly what went on in Bob's room today. . . why don't I understand it? Why doesn't any of this make sense to me, at all? Why does it feel so hopeless, like everything hinges on the result of the MRI, that nothing, absolutely nothing can move forward until the results of the MRI are in, and that if the MRI shows something, anything, on the kidney, that it's a hopeless case. . . can she give me at least a little glimmer of hope? Throw me even the tiniest of bones, something to gnaw on?

Susan, in her laid back, almost painfully slow manner, told me that if she didn't have access to Bob's records where she could prep herself about Bob's situation, and re-read what the docs had written, she wouldn't have understood the day's meeting, either. She confirmed what I believed, that nothing can be decided until the MRI is done. Then, there are several options, and maybe tomorrow, I need to call doc S and ask him to clarify these options, along with the pros and cons of each. She talked with me for at least a half an hour, and with each word from her, I slowly felt at least a little better, at least the crying stopped. She said to spend some time tonight writing down lots of questions, and then demand tomorrow that Doc S outline all our options step by step. And if I don't understand something, keep asking until I get clarification. "I don't think that's an unreasonable request," she said. Trouble is, so often in these situations, I can't even begin to formulate the questions until after I've been given time to process all that we're told. And she said the cardiology team would be in too, so they might be able to shed more light on the situation, too, maybe if they gave Bob clearance, he could have the surgery done sooner than later . . .

So, morning came. I walked the dogs, ate a quick breakfast, and then got up to the hospital around 9 a.m. No one had been in to see Bob yet. I'm glad, because I want to be talking to these doctors, too, to get more answers. So shortly after I arrived, Doc W came in, the oncology fellow. I asked him to give me a better explanation of yesterday's conversation, and to give me all the possible outcomes of what could happen from here on out. He started explaining what the options were should the MRI show the spot . . . I asked if he had seen the results yet. At first he said "no," then he said, "Here, let me see if maybe I can pull up Bob's records on the computer here." He turns to the computer, I hear the clicking of the keyboard, and then he said,"Well." then a few moment's pause, Then he turned to us and said, "Well, I have really good news for you. The MRI shows absolutely nothing on the kidney. Nothing at all. Now isn't that great," and looked at us with a smile, "a little bit of positive news here, that's great."

I said, "Sorry to be a skeptic, but does someone else have to 'officially' read the results? Are you sure that's what it says?" He assured me that Bob's record indicated nothing on the kidney. "Again, pardon me for being a skeptic, but how does a spot just disappear like that? Like magic?" He said that it could have been a low-grade infection that cleared up with the antibiotics Bob was just on, could have been something else, the important thing is that the MRI showed absolutely nothing on Bob's kidney, so any issues relating to that can be tossed aside and now we can move on.

Next item on the agenda is cardiac clearance for surgery. The cardiologists were to be in today, to talk about Bob's cardiac situation and how it looks for the pending surgery. Shortly after Doc W. left us, another man arrived, this time, it was Doc K from cardiology. Great bedside manner, this doc. Warm, personable, easy to talk to, explained things so clearly. Does this mean he's not as smart as doctors with no personality . . . hmmmm . . . anyhow, his take on the situation is that now they're wresting with the issue of the artery that's blocked, the one that didn't get stented when Bob had his heart attack. Do they stent it now or wait till after the tumor surgery, as had been suggested earlier. Another issue that was wrestled back and forth between oncology and cardiology all day . . . long, exhausting meetings with cardiologists, oncologists, waiting, more meetings, lots of note taking . . .

And the decision was made to stent the artery before Bob's tumor surgery. Again, this was a complicated decision to be made with no right or wrong answer, just what was the best option that carried the least risks and posed the least obstacles in the long run. After discussing with Bob's surgeon and Doc S, the executive decision to stent the artery before removing the tumor was made because the surgeon said the heart needs to be as strong and healthy as possible, and by stenting it, that would increase the likelihood of a better surgery. Big concerns are that by putting off the tumor surgery, it may allow the tumor to grow . . . but the powers that be (and it sounded like quite the pow-wow, with many, many heads going in on this decision together) felt the tumor surgery, being so complicated and involved, would put a great amount of stress on Bob, and ultimately his heart. . . so, the stent will be put in tomorrow. Yes, I said tomorrow. Stent in, recovery for a month or so, then tumor surgery. How's that for a nutshell ending to a long-winded entry? Oh, and in case you've been wondering about Bob throughout this whole ordeal, he's been quite heavily medicated over the past few days; experimenting with pain management, so even though he's in attendance at all these doctor's meetings, half the time he's dozing off, leaving me to contend with these white coats by myself. . .

This is all so condensed, you know, all the doctors, the conversations, my reactions, the events of the day . . . I've left so much out . . . but I got the basics covered, I think. Oh, forgot to say that the bone scan came back looking good, too. They said Bob's bones appear to have a little more wear and tear visible than someone else his age, but again, probably due to the radiation. . . god, sometimes makes me think, with what we're seeing here with Bob, the residual effects of a treatment that "cured" him 30 years ago but is now trying it's damnedest to kill him, why anyone would ever undergo the treatment . . . to stay alive, I guess . . .

I really need to go to bed here, soooo tired, eyes are crossing, fingers stabbing blindly at they keyboard . . . and maybe revisit this, edit, make some changes, whatever, in the morning after a few cups of my turbo-charged, put-hair-on-your-chest coffee. . . so many details, so many doctors, opinions, meetings, I can't keep them all straight any more . . . BUT, before I hit the hay, I did want to say tell you all that we are hearing, seeing, feeling, all the well-wishes, messages, e-mails, phone calls, prayers, kind thoughts, generous deeds, groovy vibes, pixie dust, immeasurable love. . . coming at us from all corners of the universe, we're wrapped up tightly in it . . . in all the frustrations, sadness, craziness of the past few days, I am once again humbled at the outpouring of your love and support. I've been sharing all of it with Bob, though I do have to say, they have him quite doped up right now, and he barely remembers what day it is, though I have a feeling that beneath the medicated fog, he feels it, too. LOVE! to all . . .

Sunday, April 18, 2010

Rallying the troops—no, wait—troupes? troups? umm . . . .

(The photo to the left is one of Bob's—pasque flowers in bloom at River Terrace SNA, on the Cannon River, south of the Twin Cities. Spring wildflowers have always given me such a sense of hope, strength, renewal . . . delicate yet strong, determined creatures, the early harbingers of spring, enduring harsh elements and surviving, thriving despite, in spite of, it . . . kinda reminds me of someone I know . . .)

So, Bob has probably the biggest fight he has yet to face coming up: surgery. It hasn't been scheduled yet, but I'm feeling maybe next week it'll happen, as long as everything checks out okay. He's severely under weight, has been battling the pain game for far too long (and it's getting worse) and as such is weak and lethargic, and now we're three weeks out from chemotherapy, which means something needs to be done soon. Bob needs to gain strength and weight, yet the heart attack and its residual effects are still paramount in the minds of all involved—is his heart strong enough to withstand the rigors of surgery?—is the main question, along with, "is the tumor growing, and how soon can surgery safely be done, all things considered . . . " So many variables, yet surgery needs to happen sooner than later if there's any hope of getting the tumor out before it grows or spreads. Crazy conundrum . . .

I am asking a huge favor of everyone following Bob's story: would you please, please, please put your phoning, texting, typing, chicken-pecking fingers and/or good ol' fashioned letter writing skills to work and send Bob some messages of encouragement, support, love, and whatever else you might think he could use at this time?! It doesn't have to be anything profound, life-altering, impressive or even make any sense. His spirits have taken quite a beating and right now, he really needs his friends, family, colleagues—his army of angels—more than ever, to boost his spirits, to give him that extra "oooommmmppphh!" to keep going. "When you're going through hell, keep on going" . . .

You can leave a message on the blog (look for the box below the main postings), or you can send them to me (I think my address is on the blog, under my profile) and I'll pass 'em on. Or you can e-mail Bob directly. He also likes text messages and quick phone calls, and though he may not be able to respond, it does a world of good to have that connection with the outside world. I kinda feel like it's a "call to arms" kind of situation here—we've been sitting in a holding patter for far too long, but I also feel that all of that is about to change, soon . . . if you want/need Bob's personal contact info (phone #, e-mail, etc.), let me know as I don't want to publish it on a public forum. I know Bob loves to hear from everyone, and it doesn't have to be a masterpiece, or say the "right thing;" maybe just let him know you're thinking about him. He likes to hear that. . .

So, the main doc on staff on 7D this weekend has been Bob's oncologist, Doc S, so that's a Lucky Strike extra, having the doctor who knows Bob best right there in the hospital over the weekend—he can see Bob up close and personal and get the lowdown on what's been going on first-hand.

Doc S has a reputation of doing his patient rounds ridiculously early in the a.m.—the nurses and even other oncologists joke that it's because he doesn't like to talk to patients, so he tries to get in and out while everyone is still sleeping. We'd heard this little rumor back during Bob's first round of in-patient chemo a few months back, when Doc S was again on staff one of the weekends Bob was on 7D; Bob said it was like he and Doc S were having this little unspoken contest of wills—Doc showed up at Bob's room at 6:30 a.m. the first morning and found Bob awake. Next time, he showed up at 6 a.m., again, Bob was awake. Next time, 5:45. Bob, again, was awake . . . thank god Bob was only in the hospital for 4 nights, or things could have gotten ugly. Guess what Doc S didn't figure out is that Bob never really sleeps . . .

Anyhoo (btw, does anyone wonder how I ever get anything done in life, when I digress so?
It's not just on this blog, peeps, it's my whole life . . . once again, a collective, head-shaking, "Poor Bob . . ."), I knew I wouldn't get to the hospital early enough this morning to talk to Doc S myself, so I left a List of Demands for Bob to share with him, first and foremost that Bob is absolutely not to be discharged until we see a considerable improvement in his condition. (Pic to the right is a flower called a hepatica, another early spring bloom taken by Bob, at Hastings SNA.)

There are so many things going on with Bob, given all he's been through, that I believe he needs to be in the hospital at this point, to shake all this shit out, get it all straightened out, as best as it can. Clearly, it's not happening while he's at home—running to the ER every other day is not my idea of optimal health care; it's frustrating, scary, a huge waste of time and resources, is a terrifying call for us to have to decide whether or not what he's experiencing is "just" a panic attack or a real-live heart attack. And often the ER just provides the "band aid" fix for much larger problems that need to be handled in a hospital setting. I know hospitals aren't great places to rest and recuperate, and I realize insurance companies have their demands, that patients need to be driven in and out through the hospitals like cattle in a stockyard, but once in a while a patient needs to be there. And, right now, Bob is one of those patients.

So many things about Bob's condition right now are inextricably entwined: he has to get stronger and healthier (relatively speaking) before he's ready for surgery, but he can't get stronger and healthier until some other underlying things are addressed (e.g. lack of appetite, strength, weight loss, med issues, potential infections, multiple conditions relating to the heart attack and the chemo, and the tumor itself), and the tumor is also preventing him from getting stronger and healthier and needs to be addressed now. We know what he's supposed to be doing and have tried so hard, at home, to help him eat, to get some exercise, to be there for him—Jim and Penny have been a godsend for us, being with Bob during the week while I'm at work, so he has 24/7 care, but clearly there are many things out of our control that are interfering with our efforts. Being in the hospital, right now, is the safest and most effective place for him to be.

I also requested that all the pre-surgery stuff be done while Bob's in the hospital, to take advantage of being on-site, where doctors, procedures, tests, etc., can come to Bob while he's being stabilized, instead of having to drag him to all these pre-surgery appointments with this doc and that one, to have this procedure and that scan done. Use the time wisely, or "working smarter, not harder," as Bob would say. Now, isn't that a great idea? That's me, an "Ideas" kinda gal . . .

Bob called me this morning to let me know Doc S would be calling me to discuss my "demands." He also said he had a rough night, mostly because he's hooked up to so many IVs and the main IV line that was put in while he was in the ER is in a most awkward spot—right at the crook of his arm, so he's constantly making the machine beep due to an "occluded line" whenever he bends his arm. I told him to ask his nurse if the IV line could be moved to a different spot. Maybe they can't but won't hurt to ask, especially since he's gonna be there another few days.

An hour or so later, Doc S called me. Man . . . I realize he's one of those "genius super doctors" who has saved many lives, but good lord, dude can't carry a conversation to save his life . . . lots of hemming and hawing and throat clearing does not instill a lot of confidence in me, but I try, lordy, I try, awkward though it is . . . I do appreciate that if he or his nurse says he's going to call me, he does, and he does listen patiently to my teary pleading and demands, and I do feel he has Bob's best interest at heart, which is more important than a dazzling personality. . . must be tough being a genius. Thank god I wasn't cursed with that ailment, though "brilliant" oftentimes makes more money than "dazzling." Unless you're Lady Gaga, who possesses either both or neither, depending on your opinion . . . there I go again . . .

Doc S said the game plan is to keep Bob for several days, during which time, he'll order a number of tests and appointments—a bone scan (a new test that I've not heard about up to this point—a general screening on the condition of Bob's bones; it's separate from the CT scan that will be done at some point before the surgery, of Bob's abdomen, chest and pelvis), the kidney biopsy should be done tomorrow, and he'll contact cardiology to see Bob and give their assessment of Bob's condition from a cardiac standpoint relating to surgery. He'll also speak again with Dr. Ogilvie, to see what's going on over in that camp, to see how they're doing rounding up all the key players for surgery. Doc S's take is that plans for surgery need to be amped up, and though he couldn't give me an exact time frame (that's up to the surgeon), I get a feeling it's going to be within the next week or two. He addressed all my concerns and demands and agreed that right now, the hospital is the best place for Bob to be. Seriously. It's almost as if he read my mind . . .

I'd say Bob had a good day today. I got down to the U around 1 (stopped for lunch for Bob—he requested Jimmy John's subs); he had already taken a few walks around the wing with PT, has eaten a big breakfast—more than he has in a very long time, and his pain is being managed at a very tolerable level 2 to 3. My mom stopped by the hospital to visit and came bearing gifts—an angel candle holder from my Aunt Pat (who, if anyone I know, can relate to a "T" to the chronic pain Bob is experiencing. Pat is a three-time cancer survivor and has gone through the ringer in her cancer journey, though one would never know it, she's the epitome of grace and beauty . . . incidentally, I had the great fortune to spend a few hours on the phone with her last night—I was trying to track down my mom and got Pat instead. We talked so long, shared so much . . . might make that phone call a weekly standing occurrence . . .) My mom also brought a game for Bob—Golf in a Can, we call it. It's a golf game using 12-sided dice and God knows what else. I'm sure Jim's gonna be all over that one when they get up here . . . Bob's nurses adore him—he's a smart-ass, but truly appreciates all they do for him. In fact, last night, we learned two of the night-staff nurses were fighting over him. . .

Bob ate more today than I've seen in a long time. Ate most of all three of his main meals. We learned today, via a visit with a dietician, that the hospital has all kinds of supplemental items Bob can use to add calories to foods. One called Benecalorie, for instance, is a weird, thick, tasteless substance (looked like melted lard) that Bob could mix with hot foods to add additional calories, nutrients and such. He also had two small ice cream treats and a 500 calorie nutritional supplement shake! No doubt in my mind he's in the right place, right now. . . Rock on!!

Okay, eyelids are getting far too heavy to keep up; fingers keep firing off typo after typo. Time for bed. Peace, love and ice cream malts to all!

Oh, I almost forgot—Bob has his own "suite" on 7D! I didn't know they had 'em! No roommates, no emotionally scarring testicle peep shows, no Fuzzy's to deal with—now this is more like Club Chemo, without the chemo.

Saturday, April 17, 2010

Back in the ER, then up to 7D . . .

Took Bob into the ER last night because I had received a phone call from Penny just as I was getting ready to leave work for the day. She said Bob seemed to be having another anxiety attack, but this time, the Ativan wasn't doing the trick. I asked her to put Bob on the phone, he described what was happening--he said that "this one" feels different than the other attacks, couldn't articulate why, just different. . . I told them to load Bob up and head into the ER at the U, that I'd meet them there.

Tip of the day: avoid the ER on a Friday night if at all possible, or at the very least, arrive in an ambulance . . .we waited nearly an hour after arriving at the U around 6 or so. I could tell Bob was becoming more and more uncomfortable as the minutes crawled by, trying to find a tolerable position, standing, then sitting, then standing again, slowly walking around the crowded waiting area, grimacing in pain, hands trembling. . . I finally went up to the check-in desk and asked if we could get at least a bed for Bob to lie on, gave the routine explanation of the tumor, pain, etc. I was told the ER's completely filled, that they have people in hallways because there are no beds available. I asked how much longer we could expect to wait; another hour or more is possible, I'm told. "Then we need to go somewhere else taht can help us," I said, thinking we could get back to Stillwater in a half-hour at the most, with me driving . . . the triage nurse said, "wait a minute," and called someone over to us. Not sure who this guy was, but he took one look at Bob and said, "You look terrible, buddy. Gimme a minute, we'll have a bed ready for you." As quickly as he disappeared, he reappeared again, telling us to follow him.

Long story short (or even longer . . . ), after waiting in the ER for over four hours, doing more waiting around than anything productive, and watching Bob's pain escalate to a nine on the pain scale, despite my constant buzzing of the call button to get more pain meds in him (he had missed all his evening drugs), finally, the ER doc made the decision to have Bob admitted, back up to 7D, "where my homies are," Bob said weakly . . . waited nearly another hour before Bob was finally transported up to the oncology wing he has come to know so well.

Which is where we are now, Saturday, 3 p.m., and his pain still isn't managed well; it's down to a "soft 5" he told his nurse, but he still winces and flinches, even when he sleeps. He had several xrays done on his abdomen, his neck (he's been having strange pains in his neck that aren't going away. I asked the Doc who ordered the abdomenal xrays to please check out his neck, too, just to be on the safe side). Palliative care is once again on the alert and are making some more changes to his meds. . .

I don't know how sick Bob has to get, how long this needs to drag on, before something starts to happen. All I can say is that if I have any thing to say about this, which I do plenty, he will not be discharged until he is ready for surgery. He is a very sick man and needs to be in a hospital. He is not well enough to be home. We do not need to be running into the ER every other day, for quick fixes. We need some things to start happening, and my hopes, my demands are that, now that he's here, all will truly start to fall in place and surgery will be scheduled sooner than later. If I have anything to say about it . . .

Wednesday, April 14, 2010

Anatomy of a Meltdown . . .

So, my sister, Jill, told me the other day that she was talking with a young student of hers whose father was diagnosed with a sarcoma, only after undergoing five back surgeries resulting from months of being misdiagnosed . . . he's now undergoing chemotherapy, etc., has been in a similar, excruciatingly painful condition that Bob has been in . . . I don't recall the details of her story, but the parents of this young woman are our age, early 40s, and mom decides to leave dad because "he's no fun any more." Seriously. Dude gets cancer and suddenly, he's no fun any more. There's gotta be a special place in hell (hopefully here on this earth, while she's still living), for people like this woman. . .

When we say, "for better or for worse," we never really know what we're getting in the deal, what exactly it is that we're signing up for, do we . . . but can I walk away? Would I walk away, given an out? My god, no. Not ever. Bob has jokingly said to me, "Please stay with me until this is all over, then you can dump my sorry ass." I joke back, "Are you kidding?!? You're not getting out of this that easily—you owe me big time, Mister . . ." We're far from the perfect couple, we've had our rough times in our marriage, like anyone. I mean, when two people who are about as polar opposites as two can be, the married version of Felix and Oscar, decide to spend the rest of their lives together, in the same house, as husband and wife, there are likely to be little issues that arise—what? Shoes belong in a closet?. . .

Like so many things in life, though, how well we get through things depends greatly on our choices, what we decide to do or not do . . . do we take the path of least resistance and bail when the going gets tough, when things aren't fun anymore? Or do we tough it out, the fun with the not-so-fun, with all the rough spots, all the heartaches, all the bumps and bruises, scratches and gouges, and hopefully come through stronger than ever . . . oh sure, wouldn't it be great to just up and leave, because this is "no fun any more?" But my god, there's one person who would love for all of this this to be done much more than I do . . .

Throughout this journey that we're on, people ask, "But what about you, Jen? You need to take care of yourself, too." See, the thing is, I can take care of myself, and I do. It ain't always easy and some days, it's a huge effort, but I do. I can be a part of the rest of the world, I can eat whatever I want, I can sleep without pain, I don't have to take a truckload of pills, I can take my dogs on a walk, I can meet my friends for an impromptu lunch and a drink, I can get together with family, I can hop in the car and drive to Target or the grocery store, to work . . . I can do whatever I want, whenever I want. I know what I need to do and I am doing things to take care of myself . . .

But, see, Bob can't. He hasn't been able to do much of anything for six months and counting. Yes, it's been six months, peeps, in case you haven't been paying attention or have lost interest in this little life drama . . .Six months of a life on hold, six months of enduring excruciating physical pain in his right leg that never goes away (with the strongest doses of heavily-regulated opioids, only gets to about a 2 or 3 on that pain scale, at best, but never goes away). Six months of not being able to sit in a chair, or a car, or at the kitchen table to eat a meal. Four months of debilitating chemotherapy that has made Bob so sick and thin and weak, has robbed him of his strength, his appetite, his hair, has reduced him to a shadow of his former self, who sleeps much of the day (never in long stretches—maybe an hour at a time, at the most), sleep and awake time punctuated by pill-taking. He has been unable to work for six months; so six months of crap TV, very little physical activity, due to the pain and other physical limitations . . . disconnected from the world, disconnected from friends, family and colleagues who can go to work, go out for beers, take vacations . . . sporadic e-mails, text messages and the even rarer phone call are his only connections to a world he used to belong to . . .six months of solitary confinement, with no end to the sentence in site. . .

So, maybe you can see why that trying to eat well, exercise, walk the dogs, see family and friends, sleep as I can—all of that does nothing to ease the heaviness in my heart, the knot in my stomach, the thoughts in my head. At no point in my day are my thoughts and heart separated from Bob and what he's going through. Sometimes, I feel like a jilted lover who just can't let go. I find myself constantly saying or thinking things like, "Bob always did that," or "Bob and I used to . . ." Yeah, this ain't no fun for anyone . . .

You're so strong, I'm told over and over. How can you keep it together? I don't know what I'd do in your shoes . . . Strong isn't the right word for it. Numb is more like it. I've told many people that, until someone sits down and tells us point blank that what we have on our hands is a very grave situation, I will try very hard to not worry about the unknown. I. Will. Not. Freak. Out. Freaking out helps nothing, and does nothing for Bob—he cannot have a wife buckling every time we go through a rough patch. Until someone gives me a more definite reason to be worried, I'm gonna hold it together the best I can, for all of us.

So, Monday was that day. Doc S shared some concerning information regarding Bob's CT scans that was surprising, at best, alarming, at worst. Doc S said that while others who have seen the tumor on the scans say it hasn't changed, he feels it has grown slightly. "Oh, and about that spot on your left kidney and lungs that were on the February scan and now appear more prominent on the most recent scan . . ." W. T. F.???? This was news to us—we've never been told about suspicious spots on the kidney or lungs . . . He went on to say that the lung spot appears to be an infection, that it's not characteristic of metastasized cancer, but they'll see what the next chest xray shows, after being on antibiotics for a week. That spot on his left kidney. . . he'll wait to see what the surgeon says before deciding what to do with that. . .

After we left that Monday appointment, all the questions I should have asked at the office came to me later, as usual. I called Doc S's office, relayed all my concerns to his nurse, and he called back, while I was in PetCo, getting a new leash, collar and harness for Rocco, who had chewed through his old ones. I had to step outside, because I knew, just knew I could likely get a tad emotional with this call. Doc S. basically said, once again, that he's reserving to expound on the situation until he knows how the surgery will proceed.

Well, I'm kind of freaking out about all this news, we'd never heard anything about any "spots" before. He said most everyone has "nodules" on their lungs; they're just monitoring Bob's more closely, given his condition. And, with the "spot" on his kidneywe never knew about that before, either. I asked, what if it is more cancer? He said to not jump to conclusions yet, but if it is, well, then, that wouldn't be good . . . I asked him to stop, to not tell me any more, because I could feel my head pounding, my breathing quicken, my chest tighten and I'm standing outside PetCo, 20 minutes away from home and I just need to get home, just need to get home. Like a bad movie, I kept hearing Doc S's voice repeating in my head, "That wouldn't be good, that wouldn't be good, that wouldn't be good . . ."

Wednesday, March 14, 2010
Had the appointment with the orthopedic surgeon in the morning, to get the lowdown on Bob's pending surgery, what's all involved, what are the potential obstacles, what does he need to do to prepare for it, what needs to be in place, what exactly is proposed to be done, what's the worst case scenario, what's the best case scenario, what is the time frame of the surgery, and what about recovery . . . I had my li'l notebook with three pages of questions scribbled up and down the pages and tucked in my shoulder bag as w headed out the door, once again, the U.

We got to the Fairview campus in record time, despite Bob's warning that he'd seen on the news that traffic was at a standstill on 94. Silly boy, he forgets my amazing traffic-maneuvering abilities and once again, we're almost 1/2 hour early for the appointment. We hadn't been to this clinic since January, when we'd first met the surgeon, but all was very familiar. Parked in the underground ramp, took the elevator up to 2nd floor and were at the orthopedic office. Didn't have to wait too long to get called into the exam room. Before long, Dr. O., the orthopedic oncologist, came in, and we started rehashing all that had happened in the past several months. He had a model of the pelvic girdle, and the CT scan results up on the computer in the room, and dug right in, showing us where the tumor is, what bones are impacted by it, what nerves are affected by it and the plan of attack to remove it.

As he talked we mostly listened, because the surgery sounds like it's going to be a complicated, 2-part deal, complete with a long recovery period. When pummeled with such information, I can't even begin to form a coherent question or comment, and as usual, I'm sure I'll be calling back to his office for clarification on some of this . . . Several nerve roots are impacted by the tumor, in varying degrees, and each serves special functions, from bladder and bowels, to leg mobility, to sexual function. To what degree each will be affected by the removal of the tumor is uncertain. Doc O said he's seen both sides of the spectrum—from people who have catheters and colostomies and loss of leg function, to people who come out with very little effects and go on to lead a relatively unimpaired life. Sometimes the functional impairments are temporary, while the body heals from the surgery, sometimes they're permanent. He was blunt, straightforward but also very thorough; in fact, as he talked, I checked off each question I had written down. It was as though he had somehow managed to anticipate each and every question and concern we had before we arrived, and left me with few other questions to ask.

I asked about the spot on the kidney. He pulled up the CT scan and found the area in question. He said he will meet with Doc S. on Thursday morning (today), and discuss what should be done. A needle biopsy, likely, to determine what it is. It was his opinion that surgery will still be done first, no matter what the biopsy outcome, because once chemotherapy is stopped, they want to get in there ASAP and remove the tumor. It's possible that the spot on the kidney is simply a cyst (they're quite common, we're told), but the biopsy will tell us for sure. Few hours later, after another chest scan and an MRI (Doc O needed that for a more detailed pic of the area that would be affected by the surgery), and a stop at Palliative Care for Rx refills, we were heading home.

A few nights later, Bob shared all of this with his parents . . . a tough, tough few nights, indeed. . .

Friday, April 16, 2010
Well, we're told that the spot on the lungs turned out to be just an infection. {{{{{{{LETS OUT HUGE SIGH OF RELIEF}}}}}}}}} It didn't show up on the latest chest xray, so Bob's nurse said he could discontinue the antibiotics because they had been causing constant diarrhea for the past week, which isn't good, given his condition. Now, we're waiting for confirmation on the biopsy appt., and the details of the surgery. Lots of things to put in place before surgery will happen: cardiology pre-op physical to clear Bob for surgery, biopsy on the kidney, general surgeons lined up, Doc O.'s schedule lined up . . . so much to process, so much to digest . . . and I apologize for another long and rambling post, but once I start, I often can't quit . . .

A quick little aside: I get these little e-mails in my Hotmail account almost daily, called eHow of the Day—they're short little random blurbs on how to do just about anything; not even sure how or why I get them. But the one that arrived in my inbox yesterday was titled, "How to Stop Swearing Like a Sailor." hmmmmm . . .