Finally, the start of a game plan

Bob has been at United for two nights; gets discharged tomorrow. He met with the oncologist, Dr. Howe several times while he was there, who ordered a full-body CT scan. He said they wanted to find out if the sarcoma had spread to other areas of the body; his gut feeling is that is hasn't because no other tumors had shown up on the other MRIs. However, he said this type of sarcoma, if it does spread, tends to spread to the lungs first.

They did the CT scan in the early afternoon; Bob said it was done and over in about 10 minutes. It's not as detailed as an MRI, but evidently gives the docs what they need. They got the results from the scan a few hours later. I received a text message from him that the results came back with good news and bad news. I had a few minutes between clients and called him. The good news is that there is only one tumor and that it's relatively small (3.5 cm). The tough news is that it is fused to his sacrum and that the affected nerve pierces the tumor, that it appears the tumor may have grown around the nerve, which makes the treatment plan complicated. Dr. Howe said the surgery and treatment involved is a highly specialized process one that United does not specialize in. But he said we're lucky to live in a state with two of the best hospitals in the world, the U of M and Mayo, and that he highly recommended the U, because there is an orthopedic oncologist who is well-versed in these rare types of cancer.

During these past few days, Dr. Shafiq has been popping into Bob's room, to see how he was doing and to let him know that he's doing everything he can to get things moving in the right direction for Bob. What an awesome man that doc is!

Dr. Howe scheduled a preliminary appointment for Bob at the U with this Mystery Doctor of Highly Specialized Skills for next Thursday. He's also on a waiting list, in case they get a cancellation sooner. So, he will be discharged tomorrow, with a new pain regiment, and hopefully can get through the next week with some semblance of pain management.

I stopped by for an hour or so tonight after work and was amazed to see Bob lying on his back. Haven't seen him do that in at least two months . . . the different pain regiment seems to be helping more than what they were doing before. He said he got a shower in before the scan, then had the scan, and has been on the phone all afternoon, with family, friends, etc., and answered a few e-mails, as well as played a few rounds of "golf" on his Crackberry and was pretty tired now. He seemed in pretty good spirits, though, maybe because now things feel like they're starting to move, now that a plan is in place.

We sat in the dim light of his cozy little room and talked some. He said that even though my life has been put on hold for a little while because of all of this, to please not give up on him yet. "Give up on you?" I looked at him in disbelief. "Good god, Bob! What—as if you did this on purpose?! I mean, don't get me wrong, if you were some kind of deadbeat gambler who's been out of work for months, doing nothing but trying to hit it big with internet poker, I'd have been long gone . . . but, god . . . please don't ever say anything like that again. It's gonna take more than this to get rid of me . . ." He choked up a little when he said he'd like to think he's got a few good years left in him. Most people think they'll live into their 80's; he'd be ecstatic if he made it to 65. "I just wanna live long enough to be a parasite on the government for at least a few years," was his reason.

His discharge is supposed to start around 9 a.m. tomorrow. Even though Dr. Shafiq wasn't the staff doctor on Bob's floor, it sounds like he will be the one doing the discharging orders. I want to try to get there in time so I can thank him personally for all he's done for Bob.

Kinda tired right now, so maybe will embellish this one later.

Angels and Assholes

Monday, December 28

It's nice to note that the ratio of angels to assholes at United is about 8:1, in favor of angels. Unfortunately, the calibre of assholes encountered is of the spectacular variety. Maybe if they had been simply mediocre, none of this would bother me much. But no. They have to be spectacular in their ass-holiness. Or, maybe it's because my husband has a malignant pelvic tumor that has me a little on edge lately . . .

Bob had his appointment with the neurosurgeon at United Neurosurgery Associates at Nasseff Specialty Clinic, which is attached to United, at 4 p.m. I dropped Bob off at the front doors and then drove around to the back of the clinic where Bob said there was a $2 parking lot. I saw only one lot behind the building, so I pulled in, took my ticket and ran back into the clinic to find Bob. He was already checking in by the time I got up to United Neurosurgery Associates' office.

I had called ahead, before we left, to make arrangements so Bob would be able to lie down while waiting for the doctor. After he was checked in, a nurse led him to an examining room and I followed. I'm glad I had the foresight to call, as it was nearly an hour before Dr. Kennedy finally appeared. Guess I just had an intuition about being that last appointment of the day . . .

Dr. Kennedy eventually entered the room, sporting a uniform of scrubs. He reintroduced himself to Bob, then turned and extended his hand to me. Despite running nearly an hour late, he gave me an immediate sense of calm confidence. A firm handshake and a direct gaze in the eye does that. (Unlike the pulmonologist who treated Bob two years ago at United—that man always looked at the floor or out the window when talking to me. I despised him from the get-go . . .) Despite his demeanor, Dr. Kennedy didn't offer us much more information that what we already knew. He asked if Bob had heard about the results of the biopsy, and Bob said, "Well, yes, Dr. Howe, the oncologist, said the findings were consistent with sarcoma, and that they wanted to send the sample to the Mayo for a second opinion."

Dr. Kennedy said, "Yes, it is a pelvic sarcoma, which is a malignant tumor. Whether or not the results are sent to Mayo at this time isn't our primary concern. You are in immense pain because this malignant tumor is affecting nerves in the pelvic region," he walked over to a diagram on the wall, of the spine and pelvic bones, and pointed to the sacrum, the tailbone. "Right about here is where your tumor is. These nerves that come from the spine run through here and down your leg. We aren't sure right now how the nerves are affected—if the tumor is pressing on the nerves, if it's integrated with the nerves, or if it originated from the nerve tissue itself; knowing how the tumor is in relation to the nerves will depend on how it's treated, whether that be chemo, radiation, surgery, or a combination of treatments."

He asked Bob if he knew what course of action Dr. Howe has recommended. Bob told him none, at this point, that Dr. Howe had set up this appointment, and that he was to contact Dr. Howe after. Dr. Kennedy seemed a little baffled as to why he was the first specialist to be talking to Bob since what Bob has is primarily a malignant tumor, and secondarily a neurological situation; that the approach would be multi-faceted, with oncology, neurology and other specialities all working together, based on their areas of expertise, to remove the tumor, but that oncology should be the first and foremost player in the treatment. "There's really no more I can tell you until the other pieces are in place, " he finally said.

I looked at the doctor in disbelief. So, was this appointment a waste of everyone's time? Why was it even scheduled, I asked, beginning to imagine dragging Bob to all kinds of follow-up appointments to this specialist and that specialist, piecemealing his treatment together. Dear god . . .

As if he read my mind (or maybe because he recognized the "she's about to blow!" look my face), Dr. Kennedy looked at Bob and said, "I think the best thing to do is to have you admitted to United tonight, Bob. That way, we can get everyone we need together tomorrow, in one setting, to figure out how to approach your treatment. That way, everyone comes to you, and you won't have to try to coordinate several appointments. That's our job, not yours. You've been through enough."

He looked at me. "Are you okay with having him admitted this evening?" Okay? I was ecstatic. That was the greatest idea I've heard in a long time. Place Dr. Kennedy in the rank of angels, along with Dr. Shafiq. "I'll send the admitting orders over to United, and I'll have the nurse escort you." With that, he shook our hands again and left. Shortly after, the nurse came in and said we could head over to the hospital. I asked if we could get a stretcher, because Bob can't walk that far.

"We don't have a stretcher." I looked at her. She's gotta be kidding.

"He can't walk that far—you mean, you're right next to the hospital but you don't have a stretcher or anything that he can lie on?"

"We can get him a wheelchair."

"He can't sit, either."

"I'm sorry, we just don't have anything here." I asked if she could call someone to bring something, anything, over to help us get him to the hospital. Again, she said it wasn't possible. Bob said he thought he would be able to get there on his own, if we just take it slowly.

"Well, let's try using a wheelchair like a walker, like you did before, Bob," I said in exasperation. The nurse brought a wheelchair to him, and we started out. I asked how far it was to the hospital, the nurse pointed down a hallway and said, "Not far, just down that way." Not far ended up being about the equivalent of two city blocks. We had to stop many times along the way, so Bob could regroup, get a grip on the pain that was now seething through his body continuously. By the time we got to the hospital check-in, I thought he was going to collapse.

We walked up to the counter and the woman behind the desk barked, "You've got to take a seat over there. I'm checking this patient in."

"He can't sit—we need to get him checked in right away," I said.

"Well then stand over there," she snapped.

"He can't stand either," I said.

"You all need to step away from the desk, I'm working with another patient." By this time, Bob had limped over to a cluster of chairs, and was trying in vain, to find a comfortable position. I looked at the nurse who had escorted us to the hospital and said, "Can't you do something? Find someone to get a stretcher or something over here!" She looked at me with a vacant stare. "I don't work in this area," she responded like a robot. Bob had now found a long footstool and lay face down but it wasn't nearly long enough to give him enough support.

I looked frantically around the lobby. I saw a pile of wheelchairs at the entrance, but nothing that could double as a stretcher. I must have had the same insane look on my face as I did in Dr. Kennedy's office, because suddenly, a man in a suit and black trench coat, carrying a stack of files, appeared in front of me. "Is there something I can help you with?" he asked me very kindly but with authority, looking at the receptionist, the nurse, at Bob and back at me, possibly trying to assess the situation. I launched into a babbling crying session about needing a stretcher because of Bob's condition and we're trying to get him checked into the hospital because he was just diagnosed with cancer and has a tumor pressing on a nerve in his leg and he really can't be standing any longer and no one was helping me, and I'm not really sure what else I said to this poor man who made the fateful decision to step in and help in a crisis when everyone else seemed to just be standing around, with their thumbs up their ass, to use one of my dad's favorite sayings.

"Let me see what I can find, I'll be right back," he said, and vanished in the crowd of people still coming and going in the hospital lobby. I went over to Bob and told him someone was getting something for him to lie on, and what seemed like an eternity but was probably only a few minutes later, a swarm of people buzzed into the lobby, with a hospital bed in tow. They wheeled it over to the registration desk and I heard the receptionist say, "You can't put that thing in here . . ." and someone else say, "Oh, yes we can," and then I figured out that they were there for Bob. I ran over to the group and said, "I think my husband is the one who needs that," and they swarmed over to Bob, who was still lying across the footstool.

They quickly but gently helped get Bob up onto the hospital bed and a woman introduced herself as Mary, saying she was the administrative supervisor of the hospital (I'm not sure about her title; I will have to get back on that), and that she was here to do everything she could to help us. I caught sight of the man who initially came to our rescue and asked who he was, what was his name. He said he was Shane, the manager of the pharmacy. Add another angel to the Dream Team. I thanked him profusely for helping us out before I turned back to follow Bob and his entourage. As they led him out of the lobby and back into a curtained room of the ER, Mary asked me what happened, why Bob was in so much pain and apologized profusely for the experience we just had. She said she would see to it that formal complaints would be filed on both the receptionist and the nurse who failed to help us in any way . . . one more angel . . .

We were eventually checked into the hospital, and I stayed with him until someone finally came in and got Bob hooked up to a morphine pump. It was probably after 9 p.m. by the time I left. I remembered that I'd parked behind the Nasseff Clinic, which was a long creepy walk back through now-darkened corridors, up flights of stairs, along eerily empty hallways, down elevators, till I came to a dead end, a door that was locked. I finally just went out a set of doors that lead out to the street and walked down the sidewalk, around the block and back to the parking lot. My car was the only one left in the lot. It may have been a $2 lot during normal clinic hours, but by the time I pulled out, the attendant was gone and the screen on the ticket checker-outer thingy flashed, "Deposit $15 to exit."

Tuesday, December 29 . . .

I will edit this post later, when I'm home and can sort through it more. I'll be quick to say, Bob was admitted, now has a morphine pump, which is helping his pain immensely, he said he got a pretty good night's sleep and will be meeting with doctors sometime today . . .I made a formal complaint to United's patient rep. department, regarding Bob's experience last night. Lori, the patient representative was incredible. She listened to me, validated our complaints, was mortified at the lack of help by the nurse who had escorted us to the hospital. I said I felt bad, like maybe I should have kicked and screamed and made more of a scene to make something happen, and she said absolutely not—that it's not my job to get these things done; it's the medical personnel who need to be proactive and solve the problems. Lori made a few phone calls, and called me back later to tell me that the nurse could have called transport and had someone bring a stretcher to Bob, that they do that sort of thing all the time. She then called the neuro. clinic and talked to the manager and asked what would normally be done in a situation like that; she said they make calls to transport all the time to accommodate patients. In our case, it looks like it was a nurse who simply wasn't doing her job. At the very least, I hope the phone call lit a fire under that nurse, to make her more aware of her position and responsibilities, and if it keeps one person from experiencing what Bob had to go through, the call was worth it. Made me feel a tad useful, being I was so helpless for him last night. . .

Waiting, waiting, waiting . . .

December 27, 2009

So, we play this torturous waiting game, "just a few more days," until Bob meets with the neurosurgeon on Monday, which is tomorrow, only one more day. I arrogantly say "we," because we're in this together, right? But the reality is, I have absolutely no idea what Bob is experiencing. At all. Not one iota. And what's a few more days, right? I can't help but think, "a few more days" is a big deal when you've been bedridden for over two months, have no appetite and are wasting away. . . "a few more days" is a big deal when you can't work, can't get together with family for the holidays, can't go out and take a walk in the new-fallen snow or fire up the snowblower . . . "a few more days" is a few more days of simply existing, not taking part in life . . . "a few more days" is a big effin' deal when you've "kinda, sorta" been diagnosed with cancer but don't know how it's going to be treated or how many more " a few more days" this could drag on. . .

I have had the long weekend off for Christmas, but have spent most of it alone. When I'm with friends or family, I'm alone, as thoughts of Bob and going on with with him back at home prevent me from fully engaging with those around me. When I'm home, I'm alone, because I can't be near Bob, as he needs to be lying down to keep the pain at bay; I can't lie next to him, because I could easily hit his bad leg and send him into a tailspin of pain. I can only kneel by the futon and wrap my arm around his shoulders and kiss the back of his head, and ask, as I do over and over, is there anything I can get for you or do for you right now? I am, in a word, useless.

But his loneliness is unimaginable. I can't help but think that what Bob is living right now is what "unbearable lightness of being" means . . . he hasn't worked in over two months, he cannot sit to watch TV, or to read, or work on the computer. Other than me and a handful of medical professionals and a couple visits from his parents, he has no contact with anyone in the outside world. Television and his Blackberry keep him in the loop. We haven't slept in the same bed together in over two months. It's hard to embrace him, hold him in my arms, because it's too easy to brush against his affected leg, which would send searing pain down his side. When he experiences flare ups, the pain possesses his body, renders him speechless for several minutes, takes over all other senses and functions, until it finally passes.

The pain in his leg comes more frequently now when he's standing—less than a minute—before he has to lay down and give it time to subside. And so, he tries to stay off his feet as much as he can. I try to go about my life, business as usual, but his absence from it is glaringly obvious. I get irritated with the repeated question from family and friends, "How's Bob doing?" I know people are genuinely concerned, and I appreciate the love and support and offers for help more than I can say, but my answer is always the same: nothing's changed since the last time you asked, a half hour ago, yesterday, last week, last month. I have nothing to offer.

Bob has missed out on Thanksgiving and Christmas, and now today is his birthday. He asked his parents not to come up to spend the day with him, because he said he can't do anything but lay around, so what's the point. As he's said numerous times, he doesn't want to be the animal at the petting zoo, on display but not able to do anything.

Today, my gift to him is to try extra hard not to get impatient or take anything he might say too personally. To stay on top of things, get done what needs to get done, so he's not worrying about anything unnecessarily. What I'm beginning to understand is that chronic pain trumps all other senses and functions of the body; it's always in the forefront of one's thoughts, muscling every thing else out of the picture. It's all-consuming, affecting every last thing a person thinks, says, does; when a flare-up occurs, all else is obliterated by the single effort of getting through the wave of agony that washes over the body. It's an ongoing challenge to stay ahead of the pain (instead of chasing it), by timing medications just right, and staying off his feet as much as possible, but there's a constant fear of becoming addicted to the pills that keep the pain at bay. And, a guy has to eat, and shower, too; trying to get those things in before the pain kicks in is a constant race against time. Chronic pain an unrelenting, cruel dictator that, at least for the time being, has taken life as you knew it, away.

So, right now, we have no choice but to play the waiting game. Thanks to the holidays and the timing of Bob's diagnosis, there's nothing we can do until tomorrow. Waiting is my torture, my personal hell on earth, always has been. I abhor waiting (kind of ironic, for someone who's chronically late for everything . . .). My mind starts wandering, certain thoughts start taking over. I hop on line and start reading about sarcoma, at first, believing that knowledge is power. However, at this point, since we really don't know squat, reading all kinds of stuff on the internet does nothing but fuels my fears and nightmares. We've been told that Bob's condition is "consistent with sarcoma," but to me, that means it isn't 100% confirmed, right? As such, my mind goes back and forth, from being optimistic, that means there's a chance that this might not be sarcoma, to despairing: why would the doctors at United call on the Mayo Clinic if it wasn't cancer . . .

We don't know much of anything at this point about Bob's sarcoma (if, indeed, that's what it is . . . see, there I go again), other than what I've gleaned from the American Cancer Society's website. That it is a form of cancer that attacks tissue of the body. It can attack soft tissue or bone; at this point, we don't yet know if what Bob has is soft tissue sarcoma or osteosarcoma. We have to wait to find out exactly what type of sarcoma he has. We found that it's a rare form of cancer (less than 1% of all cancers are sarcomas), and that there are about 50 different types of soft-tissue sarcoma. The treatment is based on what type it is, and where it's located in the body, and the size of the tumor. Some types of sarcoma are localized; others have the ability to spread to other parts of the body. Some, depending on the location and size, are treated easily and with success; others not so much. We don't know for sure if it's just the one tumor, we don't know if it's slow or fast-moving, we don't know exactly where it is in his sacral region .

Because of all the unknowns, I simply don't know what to do. Maybe it's a very treatable form of cancer, like prostate cancer, or Hodgkin's. Maybe it's not. It's a constant battle to keep certain thoughts out of my mind, to push them far away. I have a tendency toward "worse case scenario" syndrome, and have to do everything possible to keep that in check. Until we know more, going into hysterics is useless, detrimental. Hell, even when we do find out more, going into hysterics is useless. We don't know anything, really, and all we can do is sit and wait.

I think Bob, in the midst of his pain, his two-month-and-counting solitary confinement, and being the one with the diagnosis, is handling this better than I, at least mentally. He seems to have it more "together," he's more rational and logical, at least that's how he appears to me.T ake the snow-removal incident. I played the victim, he saw the situation for what it was and what needed to be done. And if I hadn't begrudgingly gone out and shoveled and snow-blowed (snow blew? hmmmm . . . ), he would have done it himself. Bum leg or not. That's how he rolls.

Christmas Day, 2009

We've had tons of snow already this holiday season. The upside to Bob being out of commission is that I've become quite proficient in running the snowblower. The downside to Bob being out of commission is that I've become quite proficient in running the snowblower. It's not so bad when the snow is light and fluffy, even 8+ inches of it. With the right settings, I can shoot that stuff high into the air, like a snowy Old Faithful, spraying it across the driveway and into the yard in a beautiful, airy white arc. It's almost fun. It is not fun when it's sopping wet, heavy snow that is regurgitated out of the snowblower, too heavy to be tossed more than a foot or two, even with a nine-horse-power engine. I've named the snowblower Big Bertha, as we're fast getting to know each other this winter.

The first time I took the blower out was a few weeks ago. Bob had just had his back surgery and was in no shape to do much of anything. With written, detailed instructions from him, I set out to fire up the machine and clear out the driveway. I couldn't wait to prove to him that he had nothing to worry about—he's in good hands with me in charge, yessiree! An hour and a half later, I stomped into the house, covered head to toe in snow, but with a driveway cleared edge-to-edge; I was so proud of my handiwork, I was beaming. Bob was in the kitchen, standing on one leg, making a sandwich. "What the hell were you doing out there?" he asked. I stopped dead in my tracks.

"What do you mean, 'what the hell were you doing out there'? I was snow-blowing!"

"Do you realize the snowblower has six speeds? You were inching along like a grandma up and down the driveway, you must have had it in first the whole time." I stood and stared at him. "I was gonna come out and say something," he said, "but knew you wouldn't hear me, and thought you'd figure it out eventually."

"Really? Six speeds?" I now vaguely recall seeing some numbers and a lever on the machine, right under my nose. So, that's what they were. "Well, why the hell didn't you try to get my attention—you could have come out and thrown something at me! You really thought I wanted to creep along at a snail's pace like that? Geeze . . . thanks a lot. . . there's an hour and a half out of my life that I'll never get back!" I stomped back outside, and started up the machine again and with heart pounding, popped it into 6th gear. It damn near bolted across the driveway with me trailing like a flag behind. Well, that's good to know. I vindicated myself with the next snowfall. Thanks to the newfound knowledge of multiple speeds, I had that driveway cleared in about a half an hour.

Today's snow is not as much fun. It's about 36 degrees outside, must have warmed up considerably overnight. The snow that we were getting yesterday is now drizzle and is turning the snow on the ground into wet, heavy slop. I am in the living room, writing, when Bob comes upstairs and tells me we really should start working on the snow, because it's starting to slide off the metal roof. It's better to deal with it earlier than later, he says. He means "we," as in "me," as I'm the only able-bodied person in this house at the moment. It's times like this that I wish we had a few kids. I'm sitting on the couch, tucked under a blanket, laptop where it should be, on top of my lap, writing some, listening to the Christmas music on the radio, occasionally looking up to watch the snow drip, drip, drip off the roof. If I time this right, it should all be melted by about 3 pm, with little or no shoveling or snow-blowing required. Unfortunately, that's not how Bob's mind or body is wired. I'm a "wait and see" kind of gal; he's a "there's no better time like the present" kind of guy. Never the twain shall meet. And I mean never.

Dammit. There goes my quiet Christmas day. My natural lazy side rears its ugly head in situations like this; as such, I start arguing with Bob about the importance of having to shovel right this instance. I'm warm, I'm comfortable. I have my coffee and laptop, doggies snoozing at my feet and the last thing I want to do right now is bundle up and trod outside to clear the walks and driveway. And, to be honest, after the past few times of shoveling and snow-blowing, I've started feeling the beginnings of lateral epicondylitis (aka, tennis elbow—I've had it before, even though I've never played a round of tennis in my life . . .) developing in my left arm, and am fearful it'll morph into the very painful condition that forced me to seek physical therapy a few years ago. That bout was, incidentally, triggered by wet, heavy snow. "My hands are how I make money, Bob. We can't afford to have both of us out of work right now. Can I just wait a while and see how much melts?" I am slowly but surely finding out just how much Bob did around here, when he was able-bodied. And, I'm quickly realizing that I'm not liking my new role as keeper of the house. I'm literally and figuratively sorely under-qualified.

"Oh, I didn't realize your condition was so life threatening," he says. "Don't worry about it. As soon as the oxycontin kicks in, I'll head out and start working on it." Good god, he trumps me with the martyr card. All I was saying is to wait until it had melted more, but Bob's argument is that the more the snow melts, the more water that'll be on the driveway and sidewalks, and if it gets cold again, which it's supposed to, it'll all freeze into a humongous rock-hard icy mess. I stomp into the bedroom, trade yoga pants for fleece and head outside. I hate it when he's right. No, my arm is not life-threatening, and yes, the melting snow will freeze into a hideous mess if the temps drop. I have a mild case of tennis elbow, Bob has sarcoma. Pull up your big girl pants, get your ass out there and start shoveling.

I start at the front of the house, where a 20 foot-long, two foot-high mound of solid snow that used to be on top of the house now lay across the front sidewalk and steps like a giant snow serpent. The beauty of a metal roof: when it's warm enough, the sun melts the snow sticking to the roof, and eventually the roof loosens its grip, sending a massive sheet of snow sliding to the ground with the force of an avalanche. I am seething. I know it's completely irrational, but I am. How the hell am I supposed to clear this massive pile of snow by myself? Had he been well, Bob would have been outside first thing this morning, making mincemeat of the snow pile in no time. I chop at it tentatively, wondering when my arm will give out. I would much rather be back inside, reading, or even cleaning, than doing this. I'm not sure how we're going to get through the winter, if I'm in charge of snow removal. The more I obsess about the predicament, the harder I start to chop. Before long, I'm hacking at the pile of snow and tossing it into the yard like a teppanyaki chef. With each scrape of the shovel, I slowly feel anger and pity leach from my body and soon I fall into a rhythm of shoveling. chop, scoop, toss . . . chop, scoop, toss . . . chop, scoop, toss . . .

I discover a way to hold the shovel that puts less strain on my aching elbow, and bend at the knees, using my core muscles and legs as much as I can, putting some of my Pilates experience to work. I clear the sidewalks fairly quickly, even though shoveling that snow was like heaving piles of mud . . . chop, scoop, toss . . . chop, scoop, toss . . . With each scoop of slushy, grey matter, I curse and cry. I curse the fact that we've never followed through with installing those damn spikes on our metal roof that hold snow back and allow it to melt and break off in smaller, more manageable, less dangerous chunks. Every year we say we're going to do that . . . I curse Bob's illness, at the uncertainty and unfairness of it all. I cry because I'm not stronger, physically and mentally, and have a tendency to snap at seemingly minor incidents lately. I curse the wet, heavy snow, and cry because we probably won't see any of our family this Christmas. . . .

After the sidewalk and front steps are cleared, I head for the deck and clear a wide path from the patio door to the garage door, and started on the driveway when Bob appears at the door. "Jen, can you come in here, so we can talk?" Passive aggressively, I respond, "I need to finish this before it freezes," and continue to shovel. I'm not ready to talk, just yet. After clearing a swatch up the driveway, I notice a neighbor across the street using his snowblower. I stand and watch him for a moment. Okay, this is ridiculous. I'm being ridiculous. I feel a throbbing stiffness in my left elbow. I am sweating from head to toe. I need to take a break. And go apologize to Bob. I prop the shovel up against the house and head inside. He's lying on the bed in the bedroom. I lay down at an angle to him, not too close, so I don't bump his bum leg. "I'm sorry, Bobby, " I mumble, and bury my nose in his black hair. It's as close as I'm able to get to him these days.

"We both need to be a little stronger than we have been lately," he says softly. Immediately, I feel like a jerk. "I know this news is still kind of fresh and we don't know much more than we did before, but we have to support each other through this. We just have to, Jen." He paused for a moment or two. "I'm sorry about your arm. You haven't said anything about it, I didn't know you were in pain. I'm really sorry about what I said. You shouldn't go out and hurt yourself just to spite me."

I take a deep breath. "I don't feel like I have a right to complain about anything right now." Dammit, why did I say that? "I guess I just get kind of pissed, because it is hard on me, too—I feel like I'm trying hard to keep everything going, get everything done—I cook the meals, do the laundry, walk the dogs, work full time, snow-blow, but it still isn't enough . . . I'm sorry about getting so pissed. . . I need to work on that. To be a little more proactive than reactive. " I then launch into my great idea about heading to Home Depot tomorrow, to find out about getting some snow spikes for the roof, as if that's the solution all our problems.

I ask Bob if he thinks it's okay to get the snowblower out for the driveway, as slushy as the snow is. He says the it should be able to handle it, to at least try, anyway. I kiss the back of his head and go back outside to fire up Big Bertha. Buck up, li'l soldier. Get over yourself. I get Bertha going and she plows through the slush sluggishly, but successfully. It certainly beats shoveling, though this snow does not arc gracefully across the driveway like the powdery stuff did. This was like slogging through a giant Slurpy, the sopping wet snow regurgitating out the chute like grey vomit. It took over an hour to go up and down the driveway, clearing the mix of slush-snow; half way through, I figure out I should have started in the middle of the driveway and worked my way out. With each snowfall, I'm learning the intricate art of snow-blowing. By March, I should have this down to a science.

After an hour, I finally call it quits, and come back inside, to throw my soggy mittens and fleece pants in the dryer. It doesn't feel like Christmas. I want Monday to come, so we can get more answers. It's this "not knowing" that makes me the most crazy.

Test results . . .

Bob was released from United on Saturday, December 19th, and was told it may take a few days to get the results of the tests interpreted and the information back to him. Monday went by, Tuesday went by, and Wednesday began, with no word from anyone at United. Bob had placed several calls to the neurosurgeon's office, as well as to Dr. Shafiq's department and to the oncologist, but no one could give him any information.

After waiting around all morning and hearing nothing from anyone, I finally went to work on Wednesday, and like the previous two days, gave Bob strict orders to give me a call as soon as he heard anything at all. I'd keep my phone close by.

Being a hairdresser for 15 years is a blessing and a curse. So many of my clients have been with me for so long and know me well, as I do them. Thus, when I'm asked what our plans are for Christmas, it's hard to lie or to omit information when talking to them, as they're like friends and family. I have told a few clients little bits about what's going on; I don't mention oncologist or anything remotely connected to that. I just say that we're waiting for test results for some mysterious leg pain Bob's been having, and hopefully will have some answers before the holidays. To others, I simply say we don't have a lot of time off for the holidays, now that Bob's working retail hours again, and leave it at that.

I had about ten minutes before my last client of the night was to arrive, when I walked by my phone and saw it light up. Bob's name appeared on caller ID, so I quickly answered it. It was almost six p.m. on December 23rd. My heart sank, thinking Bob's waited all this time, and once again, had heard nothing from anyone.

"Hey. I just got off the phone with Dr. Howe, the oncologist. He apologized for not getting back sooner—didn't have a reason, just said it took longer than expected to get the results back." Bob was talking fast, with a distinct purpose. "Dr. Howe said they just got the results of the biopsy today, and that were consistent with something called sarcoma." Sarcoma. I'm not exactly sure what that is, but cancer immediately popped into my head. I walked into the back entry of the salon, closed the door and sat on the steps. Bob continued, "They're going to send the results of the biopsy to Mayo, for a second opinion. They haven't come right out and said this is cancer, but as I said, Dr. Howe said it's consistent with sarcoma, and that's why they send the results to Mayo, to confirm their findings." A dull throb begins to pound at the base of my head. This is not what I was hoping to hear, but at the same time, I feel a little bit vindicated, that Bob was right, that our persistence is finally paying off.

"So, what do we do now? " I asked.

"I just scheduled an appointment with the neurosurgeon on Monday, the 28th—they just called me this afternoon, too—so we can go over the results of the second MRI. I've started a list of questions to ask, when we go in on Monday. I started looking up sarcoma online, and had to stop. I guess I need a little time to process this, just can't look at that kind of stuff right now." There is a pause on his end. "I'm sorry I got you at work—I was hoping you wouldn't answer, but I know you've been anxious to hear something, so that's why I called." I could feel my throat tighten up. I knew if I said much, I'd start crying. I've only got one more client tonight, I thought. All I have to do is get through this one appointment without crying, then I have all weekend to cry.

"I'm glad you called, and I'm glad I happened to walk by the phone when your call came in. Even though this is absolutely not the news I was hoping to hear." Just one more appointment. One more. I can do this. "At least, now we have a name, now we have some proof that we aren't crazy, huh?" I was getting more and more pissed off, sitting in the dark entry, thinking about the orthopedic surgeon, about Bob's primary doctor, about the neurology clinics, all the people that wouldn't see Bob, or take his situation more seriously. That we had to take drastic measures, take matters into our own hands, to get him in to see people who could finally help him. I can't be like this, it's hindsight, there's no way they could have known, I started repeating to myself. I really can't think like that. It helps no one. At least now we have a name. Knowledge is power. As soon as I said goodbye to Bob and hung up, I Googled sarcoma on my iphone, and read in the dark.

This came from the National Cancer Institute's website:

Sarcomas are malignant (cancerous) tumors that develop in tissues which connect, support, or surround other structures and organs of the body. Muscles, tendons (bands of fiber that connect muscles to bones), fibrous tissues, fat, blood vessels, nerves, and synovial tissues are types of soft tissue. Soft tissue sarcomas are grouped together because they share certain microscopiccharacteristics, have similar symptoms, and are generally treated in similar ways (1). They are usually named for the type of tissue in which they begin.

Hotel United is sofa king awesome . . .

Bob was finally wheeled up to the sixth floor of United Hospital, around 4 pm, where a nurse checked him into his own room, took his vitals, and said the doctor would be seeing him shortly. The nurse told him, "You're very fortunate to have Dr. Shafiq, the hospitalist who's on staff tonight, as your doctor. He's wonderful—you'll love him. Once we get you settled, you can order your dinner from the menu on the bedside table. You have no diet restrictions, so order whatever you want, and it'll be delivered to you in about 45 minutes." Menu? I picked it up and started reading: turkey dinner, chicken Alfredo, meatloaf and mashed potatoes, club sandwiches, ice cream sundaes . . .

Bob asked the nurse to adjust the bed as flat as it would go, so he can lie on his stomach, which is the most comfortable position for him. The hospital bed also has a built-in scale, so after adjusting the scale, she weighed him. 115 pounds. I nearly fainted.

"Oh my god," I gasped. "You weigh even less than I thought! That alone warrants this hospital stay, Bob." Bob has a small frame, built like a marathon runner; even so, 115 is alarming when his healthy weight should be closer to 130. "Here," I picked up the hospital menu, "we're going to order you the cheeseburger—make that a double—and fries, a chocolate malt . . ."

I'm not sure how long we waited, but eventually a man entered the room and introduced himself as Dr. Shafiq. He immediately started asking Bob questions about his current situation, how long this had been going on, what he's done up till now, to list all meds he's taking. When Bob mentioned the cholesterol medication and daily aspirin he's been taking for two years, Dr. Shafiq asked why. Bob told him about his heart attack.

"You had a heart attack?" Dr. Shafiq stared at Bob. "How could that be? You look so trim, and, well, disregarding why you're here, appear to be very healthy . . ." Bob told him that the heart attack was probably the result of radiation he'd had for the Hodgkin's he had as a child. Dr. Shafiq dropped his pen on his clipboard and simply stared at Bob. "Dear god, young man, you have been through so much . . . more than one person should ever have to go through in his life . . ." He finally picked up his pen, scribbled more notes, and then looked at Bob and told him that he was finally in the right place. He would see to it that the right people are alerted to his situation, so we can get to the bottom of what is going on.

Dr. Shafiq eventually excused himself, leaving us alone. A few moments of silence passed. "Wow," I finally said. "You don't expect that kind of compassion from a doctor now, do you?" Bob agreed. It was after 8 p.m. when I finally kissed him goodnight, and went home to feed the doggies and crawl into bed.

Bob ended up staying at United for 3 days. His parents came up to be with him during the day; I stopped by before and after work, just to say "hi," to see what, if anything, was new. He underwent another MRI (#3 since this all started; they wanted a post-surgery MRI), then another one. A mass was detected in his lower sacral region (right in the area where Bob has been experiencing all this pain . . . go figure . . .), and the last MRI was taken lower than the first ones, to get a clear view of the mass. Then, a biopsy on the mass was ordered, to find out exactly what it is. Bob met with a neurosurgeon and was supposed to talk with an oncologist while he was at United, but that was postponed until the results of the biopsy and other tests were ready. Not sure why the oncologist at this point; I was hoping it was just standard hospital protocol, when an unidentified mass is found on an MRI.

Bob called me one night, to relay the day's events for him, and then told me that Dr. Shafiq came into his room, stood by his bedside and told Bob that he was going to make it his personal mission to make sure everything is done to help him become healthy again. Bob started crying as he relayed this story to me, which once again turned my tear faucets back on. At that point, we decided Dr. Shafiq is an angel. Feels good to know someone in his position is going to bat for Bob.

Bob was finally released on Saturday, December 19th, with more pain pills and was told he would be contacted within a few days, regarding the results of the MRI and biopsy. More waiting . . .

ER, here we come . . .

Helpful hint of the day—plan your emergencies after lunch on a Wednesday afternoon. We were checked in immediately at United's ER, and in the time I ran out to park the car in a ramp and returned to the check-in desk, Bob had been whisked away. I was escorted down the hall to a curtained room, where Bob was already sporting a flimsy hospital gown and talking with a doctor and nurse. I listened to them talk, Bob explaining what was going on, the doctor listening attentively. When Bob finished his story, the doctor paused for a moment, and then gently asked what Bob hoped they could do for him at the ER. By this time, I could tell Bob's pain medication had begun to wear off. He was wincing in pain, trying hard to fight back tears. I knew that by the time the tears appear, he is in unbearable pain. I started crying, too.

"Well," he began, "if I could just get some better pain relief, that would help—" It never occurred to me at the time, but after the fact, a nurse-friend of mine commented that the ER sees lots of prescription pain med addicts; was that what the doctor was thinking? Could have been . . . I interrupted, and between sobs, I begged the doctor to admit Bob to United. "He needs specialists to see him . . .this has gone on for two months! Look at him—he's wasting away—he weighs less than 120 pounds!" I was crying uncontrollably, and felt a kleenex being pressed into my hand. It was the nurse, and she was patting my arm. "I'm so sorry," I gasped.

"It's okay, honey," she said. "I'd be doing the same thing if it were my husband . . ." I thanked her and gratefully took the kleenex. She gave one to Bob, too, as by this time, he was crying openly.

"He's done everything," I continued, as there's no stopping me when I'm on a mission, "PT, chiropractor, two cortisone shots, copious amounts of pan medication, and now, two weeks after back surgery, he's in worse shape than before." I stop to catch my breath. "Please. I called the U of M and the Mayo clinics, hoping to get him in to see a neurologist, but we're told we can't get in for months, but he's already been like this for months—it can't go on any longer, he can't be like this for even a few more days . . . " I can't tell if the doctor is looking at me with sympathy or with disdain.

I finished my pleading request with, "I know this might not be the most orthodox way to see a specialist, but he needs to be seen by a someone who can figure out what's going. He needs to be admitted . . ." The doctor was nodding his head slowly, trading his gaze from me to Bob. "Bob, what do you want me to do?" Bob nodded and said quietly, "I would like to be admitted, if you can do that for me." The doctor stood up and told us he'd be right back. He left us alone in our curtained corner of the ER. I apologized to Bob for my pathetic performance, but I told him this is where he needs to be. If he can get admitted, then he'll have access to specialists who can help him. I'm repeating what Julie had told me earlier that morning, but even as I was saying this to him, I was skeptical. I wasn't sure if any of that would happen at all. What if the doctors at United dismiss his situation as "classic sciatica," as everyone else has? We sat in the ER room, and waited.

Not long after, the doctor reappeared. "Bob, we're going to get you in to the hospital. It's going to take a little while to get a room ready for you, so hang tight. We'll give you an injection of Dilaudid for your pain—it's a little more potent than what you've been taking at home." I'm pretty sure Bob's ears perked up with that one. From his experience with injectable opiates during his stint in United two years ago, he's a big fan. Not that he's used them since then . . . "Once you're admitted, you'll be able to be seen by specialists who can help you figure out what's going on here. I wish you both the best. Take care." And with that, the doctor disappeared behind the curtain.

Sofa King Frustrating . . .

About two months ago, mid-October, Bob started experiencing some pain in his right leg that traveled down to his foot. He had just quit his job and had two weeks off before starting his new position back at Surdyk's in Minneapolis, and was looking forward to having two blissful weeks of doing nothing, or anything, his choice. When the pain started to get worse, he went to see his doctor. He was diagnosed with sciatica, prescribed some pain meds and physical therapy. His two weeks' vacation became two weeks of bed rest, but was optimistic that this too, shall pass.

The pain got progressively worse, and over the course of the next several weeks, he began his litany of therapies: PT, several trips to a chiropractor, two epidurals of cortisone, and even a visit to an acupuncturist (who gave him a couple of very small, very expensive bags of yard waste, which were to be boiled into a "tea," and ingested twice a day over the course of several days. The process of cooking the tea was tedious and time-consuming, and was my job, as Bob couldn't be upright for long. It filled the house with a curious aroma of potpourri and . . . manure. It might be important to note that we currently have our house on the market, and need to be ready to vacate for a showing at a moment's notice. They say baking cookies or an apple pie is an alluring, homey touch when showing a house. Boiling shit-tea on the stove, I'm pretty sure, is not. He choked down a half a cup of the tea, damn near threw up, and promptly deposited the rest of the pricy bag of twigs and leaves in the trash).

But, I digress. During this time, Bob started his new job at Surdyk's on November 10th. He only made it through a week or so before he had to stop working. He couldn't sit, couldn't bear weight on his right side, and therefore couldn't be on his feet for very long before the pain became unbearable. By this point, Bob had become basically bed-ridden, limited to lying on his stomach or unaffected side, and only being on his feet for very short periods of time. All along, he has asked every professional he's worked with why nothing could be done about the specific area he's feeling the most pain, deep in his right hip/butt. Everyone he's seen has said it's referred pain, that sciatica originates from the spine, but the pain materializes in other areas—the butt, leg, foot.

As much as I was against it (easy for me to say, being the one not in pain), he eventually decided to have back surgery, after six weeks of nearly constant, unbearable' pain, and zero-quality of life. He got a referral from his doctor to see an orthopedic surgeon to discuss the surgery. His doctor's recommended surgeon was booked up, but I got the name of a surgeon from a client who works in an orthopedic clinic. Several more days, a few more appointments back and forth between his primary doctor and the surgeon, and two MRI's later, Bob was scheduled for surgery on December 3rd, to correct a herniated disc at L5-S1—lower back—that was found on the MRI. We're told that 90% of people who have the surgery are up and at 'em within a few short days. He was nothing, if not hopeful that this would be his ticket to health again.

Two weeks passed after the surgery, and Bob's pain did not go away. In some ways, had gotten worse—the duration of the pain seemed less frequent, he said, but the intensity of the pain increased. At his post-surgery appointment on December 14th, we were told that the herniated disc hadn't been that impressive, but that a nerve had adhered itself to some old scar tissue near the herniation. The surgeon had to "peel" the nerve off the tissue to allow it to heal and become "normal" again. He said that may be contributing to the excess pain, because now the nerve may be even more inflamed, and that nerve pain takes longer to subside and heal than other tissue. He prescribed more pain meds and more physical therapy. This seemed to make sense, to a degree, but Bob asked, once again, if anything could be done about where the pain is at its worst—deep in his hip—so he could gain some mobility, some relief, some semblance of a normal life again? The surgeon said, once again, that it's referred pain, that even though he has the pain in his hip and leg, it originates at the spine, and that's where it must be treated. Classic sciatica symptoms, he's told again. We left the appointment scratching our heads, wondering how he's going to endure more physical therapy . . .

The next evening, December 15th, I came home from work and found Bob crying in intense pain. He told me he can't go on like this any more. It had been over two months since the leg pain started, none of the therapies have helped, and the surgery has given him no reprieve from the pain; instead, it's worsened. We had to think of another plan of action. I had been talking to a doctor-client of mine that night at work and, based on what I'd told her, she thought the orthopedic surgeon missed the mark, and that something else is going on. She suggested Bob be seen by a neuro surgeon at a neuropathy clinic. Trouble is, she said, it will take weeks or even months to get in to see someone.

Early Wednesday morning, December 16th, I started calling neuro clinics: U of M, Mayo . . . each tells me that it'll take months to get in, unless Bob gets a recommendation from his primary doctor, then they might be able to see him sooner. We placed a call to his primary doctor and then sat and waited. An hour or so went by with no call from his doc, so I decided to take the dogs out for a walk, to think, to burn off some nervous energy. On our walk, I made a decision. We can't sit around and wait for someone else's blessing to get into a specialty clinic. Someone needs to see him. Now.

I decided to take him to the ER that day, even though I was afraid we'd be turned away—there's no blood, no guts, no broken bones or bullet wounds . . . I called my good friend, Julie, who works as a care manager for the elderly. She deals with this sort of thing every day, getting people admitted into care facilities. I was crying as I walked Gaia, telling her Bob's story, and my solution. I wanted was affirmation that my idea was legit, that we would get the help Bob needs if we went this route: "My god, Jen, this IS an emergency!" she said. "THIS is what the ER is there for—you don't need blood and guts to use it! Get home and get him in there right away!"

When I got home, I told Bob what we were going to do. He resisted at first, but I told him that he needed to be seen by someone, and we can't wait weeks, or even a few more days. We both believe there is something else going on, and I'll see to it that he's admitted and get the attention he needs—I have no problem playing the crazy, hysterical wife (been there, done that, should have a t-shirt). He reluctantly agreed, and we loaded him up in the car (since he can't sit, I dropped the back seat, lay a blanket down, a pillow for between his knees), and headed to United in St. Paul.

Introducing . . . Sofa King!

This is a blog about Bob's journey (again) with cancer. The first time was three decades ago, when he was a young boy, a battle with Hodgkin's disease, long before I knew him. This time, it's sarcoma. I am Jen, his wife. A spectator on the sidelines, sometimes cheerleader, supposedly Bob's anchor, his rock, his pillar of strength in times of need (whoever had that great idea has the wrong woman in the job. I fly off the handle, I get irate and impatient. I cry like a baby in the ER. I have been known to scream at doctors and call them ugly names when they aren't helping my husband. Not sure if that's the kind of "strength" Bob needs right now . . .). This blog might not be necessary, or only necessary for a very short time—I can only hope and pray that's the case, that this will all blow over quickly, and he'll be up and running again soon. Literally and figuratively.

Right now, we know very little about Bob's situation, the prognosis, the course of treatment he will have. We don't even know 100% that this is truly sarcoma. On December 23rd, after having a biopsy on a mass found by an MRI, the oncologist said, "the results are consistent with a sarcoma." The powers that be at Mayo Clinic will decide for certain.

"Sofa King" has become kind of a joke between us: Bob once saw a sign in a co-worker's office that read: "I am sofa king we todd it." I abhor the "retarded" reference, but we kinda ran with the "sofa king" part, and now everything has become "sofa king" this and "sofa king" that, in our world. As in, doctors can be sofa king stupid, but Dr. Shafiq at United is sofa king amazing. Or, it is sofa king cold outside . . . Bob's also become sort of a Sofa King himself, as for the past two months, he's been having a very difficult time walking, sitting or lying on his back; thus, he's made the futon in the basement his bed and center of his universe. Yes, the futon is not "technically" a sofa, but . . . sofa king close.

Writing helps me process things, to "get it all out," work through the issues, document the obstacles, rant about the frustrations and sing praises to the little miracles that occur in our daily lives. I'm better at writing things down in black and white, rather than verbalizing—I tend to be a tad reactive and maybe more than a little emotional with the spoken word, and am hoping blogging about this experience will help me keep a better grip on what's happening. Keep me grounded, a little more in control. We'll see about that. It also keeps me busy, keeps me out of Bob's hair, keeps me from going downstairs every ten minutes and ask if he's doing okay, or if I can get him anything.

I also see this blog as a way to connect with family, friends and others; a "go-to" place to share updates, information. We've been down a similar path 2 1/2 years ago, when Bob had his heart attack (actually not similar at all, as it was a completely different medical issue, but I guess we're finding it's all entwined and entangled in some way or another), and used Caring Bridge to keep everyone in the loop about Bob's heart attack. Caring Bridge is an amazing resource, a miracle of a service to help people keep in contact with friends and family during a health crisis. However, at this time, Bob felt that Caring Bridge is a bit too "serious" for his situation (in his words, "Isn't that just for people who die?" I said, "I used it for you when you had your heart attack and you didn't die then. So, NO. It is not just for people who die."). He momentarily toyed with the idea of hopping on the Facebook bandwagon, but I was quick to tell him that f-book is not the place to share this kind of information—Facebook is transient, innane and superficial. I've tried blogging a few times in the past, but never felt I had much of anything important to write about. Now, unfortunately, I do. Thus, the Sofa King blog was born.