Sleeping soundly. . . yea!

Bob was finally moved up to 7C, the oncology floor, around 7:30 last night (that would be Wednesday now, since I started this entry yesterday, but couldn't keep my eyeballs open long enough to finish). Well, technically, he's on a wing called simply, "Medicine," so I don't know if it's actually oncology or just happens to be on the floor with the other oncology services—you think I'd know all the nitty-gritty details down by now . . . (okay, now I know—just asked his nurse. The "medicine" wing is patients who aren't post-surgical, but who have chronic, complex medical issues. A variety of patients, not just oncology, are here. Inquiring minds gotta know . . .) Has his own private room (yea!) and pretty much fell fast asleep shortly after he was moved and settled in. I gave him several kisses (annoying as hell, I'm sure, to someone desperately trying to catch up on sleep) before tiptoeing out of the room to head for home for the night.

Took forever and a day to get Bob moved—was supposed to happen Tuesday, but a room wasn't available till last night, so much of the day was just sitting around, waiting. A few docs popped in here and there, but otherwise not much action. And that, my peeps, is not always a bad thing in our world . . . sounds like he'll be kept here at the U at least a few more days, till everything looks safe and stable enough to discharge back to home. The color in Bob's face looks so much better, his stomach isn't nearly so distended, and he was even—finally—able to sit up at the edge of the bed last night, for several minutes, the first "real" physical activity he's done since arriving Sunday night. They're still not letting him eat anything yet, want to make sure the bleeding's under control, that the bowels are "waking up," that all tests that require "nothing by mouth" have been done . . .

The bowel obstruction that flared up in the past few days seems to be correcting on its own, so the docs decided to scrap the NG tube (again, yea! as it soooo sucks to try and get one in Bob—always has issues with gagging, etc; that, and it adds the risk of irritating his GI tract, which could lead us back to more bleeding) and see how things go.

Overnight, Bob's hemoglobin levels dropped enough that they decided another scope should be done this morning, just to make sure the ulcer site hadn't ruptured. That came back fine (give me another yea!), no bleeding from the ulcer, but now he's just had yet another test, down in Nuclear Medicine (yes, nuclear + medicine, used together in the same phrase . . .), to rule out the possibility of internal bleeding somewhere else that isn't showing up on the scope. This procedure involved drawing some blood from Bob, radiating it, then putting it back into him. The radioactive blood is then tracked, via an hour long x-ray, which will show abnormal bleeding in other parts of the body, if there is any. Bob was told that if something showed up abnormal, they'd have to move him to another room, another machine and do another test. That didn't happen, so we're assuming everything turned out fine with that test, as well, though we haven't had official word on the results yet, so I won't give that an official yea! just yet . . .

The GI doc thinks the drop in hemoglobin levels could just be because Bob's been given so much fluid but hasn't been able to "output" as much (more coming in than going out, is how he put it), so maybe his blood is simply diluted with the extra fluids. . .

Bowels are finally, slowly "waking up," his urine volume is increasing, no more bleeding in the GI tract (good grief . . . to talk about my husband in such an intimate, yet highly public way—I hope it doesn't come across as disrespectful or insensitive; the reality is, the tumor and so many of the complications he's dealing with are localized in the pelvis, sooooo, kinda hard to talk about what's going on without mentioning those very important functions. . .). Doc just popped in for probably the last time tonight—gave the official word that no other bleeding was detected with the nuclear medicine test, and he's now graduating to a clear liquid diet! With all the tests that have been done in the past several days, it doesn't appear that the tumor is impacting his bowels or kidneys/urinary tract , that thus far, it's localized. . .(gimme a whole bunch of yeas!) . . . maybe soon, we can head back home. . .

Not back home yet. . .

The GI bleeding is from an ulcer in Bob's duodenum (new word of the day . . . ), the first part of the small intestines, just beyond the stomach; discovered yesterday, by the GI team, using a scope down into Bob's upper GI tract. Right now, it's presumed to be caused by being on so many blood thinners, which are tough on the stomach, which also causes lots of bleeding, double-whammy . . . he was taking an antacid-type medication, but evidently, not enough . . . the bleeding stopped yesterday, not before losing a considerable amount of blood. Bleeding has stopped and he's on a more effective, potent regiment of antacids and stomach "protectors," (for lack of a better word there), but ended up needing 4-5 units of blood to replace what was lost, still very weak and not allowed to eat anything, which isn't a big deal now, because he's not much of an appetite, anyhow. . .

He'll be at the U at least another few days, as now a new problem has arisen: a partial bowel obstruction. . . his stomach has become quite distended, he's not having bowel movements, nor is he putting out much urine, despite receiving continuous IV fluids. . . Many tests are being done to determine the cause of the obstruction. It could be from the additional narcotics given for the GI scope and other tests (narcotics are notorious for affecting bowel function, causing constipation and sometimes worse; Bob hasn't been on nearly the amount of narcotics he was pre-surgery, so perhaps, as has been proven time and again, he's just so sensitive to the additional narcs and his body is reacting as such); it could be that perhaps the aggressive tumor is now growing and pushing into his organs and causing disruptions. . .

Doc on staff in the ICU ordered an NG tube to relieve the pressure of what "might" be just a minor obstruction; I asked why some kind of scan isn't also done right away, to immediately rule out the possibility that the tumor is growing into the GI or urinary tract. You know, that proactive approach I'm always bitching about . . . That was followed by a dirty look from the doc, who brusquely explained that the NG tube needed to be inserted immediately, to relieve the distention. Just asking . . . Shortly after, we're told Bob will be transferred out of ICU sometime today and have a new team of docs looking after him. . . and even before the NG tube is inserted, another round of tests were ordered—CT scan, ultrasound, x-ray all on his abdomen. I ask his nurse why this was being done. She pulls up Bob's record on the computer and says, "Well, it looks like the doctors want to look more closely at his abdomen and kidneys, to see if they can see anything physical that might be causing the obstruction." hmmmm. . . .

As of this writing, 10:30 p.m. Bob hasn't left the ICU, nor has the NG tube been inserted (his nurse tried manually, but had no luck. I guess I could have told them that, too, that Bob has a history of not doing well with NG tubes, but I didn't give it much thought, and figured Bob would let them know. . . at some point, interventional radiology will have to do it, if it's going to be done at all. . .)

and to think Bob just wanted to "ride it out" at home. . .

Third verse, same as the first...

Home barely a week, and we're back at the U, Bob's in ICU... God, I thought we had seen the last of this place ... Writing this from my phone, so forgive the typos...And right now, all I can do is sit and write. Either that or sit and wring my hands at his bedside, which I know would drive him nuts...

Bob had been feeling kind of queasy for the past few days, I took his temp, no fever or any other signs of infection, just a constant upset stomach since Christmas eve, would kind of ebb and flow with intensity, though he said it seemed to be going away yesterday...

Last night, however, the nausea came back, became pretty intense; I grabbed a trash can and set it beside Bob, lying on the couch...suddenly, he started heaving and violently throwing up, all blood, so much blood...he said he immediaty felt better and just wanted to ride it out at home, I said that was BLOOD and LOTS of it, no way....quick call to 911, back to Stillwater ER (we'd just been there a week ago, the day Bob was discharged from the U--i don't think i even wrote about this one--we'd literally just walked in the door, suddenly discovered Bob's wound site was bleeding profusely...went to Stillwater ER, as it would have meant a trip back to the U during rush hour, and god knows how many more hours in the U's ER. Serious as shit, don't EVER go to the U for a real, life-threatening emergency, you'll probably die before you're seen...that bleeding incident was controlled by the great staff at Stillwaters ER, and he was discharged with no more issues relating to that...)

Anyhow, back at Stillwater ER last night, where Bob continued to projectile-vomit straight-up blood, over and over...they had a helluva time getting IVs in him, his veins just kind of collapsed from the sheer loss of blood volume...

Eventually got a few IVs in, given fluids, unit of blood started, then transported to the U, as his hemoglobin was dropping, along with his vitals, skin was cold and clammy to the touch, shivering, color was absolutely drained from his face...just when I'm certain I've seen him at his absolute worst...

Called Penny and Jim, they arrived sometime after midnight, don't even know when....my sis, Jill met me at the ICU unit at the U, to be with me till J&P arrived...didn't do much overnight except to keep fluids and blood running...he continued to throw up until after one, then finally started to settle down...now, this morning, Bob's getting a gi scope, to try to determine where the bleeding's coming from, and if it's stopped or needs to be stopped...gi doc seems to think it's something as simple as an ulcer causing all the bleeding, given the heavy-duty blood-thinners Bob's on, which can both cause the ulcer and the non-stop bleeding...

again, a never-ending balancing act that leaves us frantically trying to figure out what to do, what to do...

Quiet Christmas. . .

Christmas eve a.m. . . .

Quiet Christmas morning, Bob's still sleeping, dogs have been fed, coffee made . . . we'll have a small gathering of family here later on Christmas day, for dinner, but should be a mellow day up until then . . . Bob has been home with me for a full week now, a week that's been mostly uneventful, though punctuated periodically with a flurry of activity: a home health nurse checking in three times a week, PT at least once or twice, and other services as needed (social worker, lymphedema specialist, etc.).

In between those visits, our days have been peppered with visits from friends, family, neighbors, co-workers—pretty sure we now have enough wine, Christmas cookies and Trader Joe's goodies to last till spring, or at least till next week . . . cards of well-wishes and generous gifts fill the mailbox, e-mails adorn the in-box, unexpected packages show up on the doorstep, and not one, but two sets of carolers last night (one group presented us with a candle that had been lit by the light of the Christmas candle burning in Bethlehem—as in the Bethlehem! How cool is that?!) . . . we are in awe, unspeakable awe, warmed and blessed through and through with the gentle waves of generosity, love, support washing over us, showering us endlessly. But, truth be told, I'd give it all back, a thousandfold, over and over again, if I had a choice . . .

Bob's family was here for much of the week; having Nancy from Saturday till Wednesday was a wonderful early Christmas gift. A good five days of quality family time, great meals, just being. . . we even Skyped with Brian and the girls back in Montana one night . . . I swear I didn't lift a finger around the joint till Wednesday, when they finally headed out, first, to drop Nance off at the airport, then home for a few days. . . Penny and Jim will be back today, Christmas day, to spend at least the day with us, maybe a few more, as Bob's birthday is on Monday . . . I thought the house would be almost too lonely with their absence, but as I've mentioned, it's been far from it; haven't really had much quiet time alone yet. I suspect after the holidays, it'll calm down some . . .

Still trying to get used to this in-between world, where all the rules have changed, nothing makes sense, the focus of everything we now do takes on a whole new meaning . . . sometimes seems meaningless, like we're going through the motions just to be doing something, until I realize I'm allowing The Lump's pronouncement infiltrate my brain and affect my actions. . . I have to consciously, forcefully, push him and his words out of my head, remind myself that our mission, our purpose now is to pick up where the U so miserably failed Bob, which is addressing and tending to his quality of life . . .

At home, for the most part, Bob is getting good, restful sleep, still has a great appetite and is so grateful to be home, with his pups (ummmm, lemme clarify that with a usually. When Rocco succumbs to the "brain worm syndrome," which sends him into a jacked-up doggie ADHD frenzy—happens maybe once or twice a day—then Bob declares, "That's it! I'm going back to the hospital, where a guy can get some peace and quiet!"), with friends and family coming by for visits. Even took a trip down to his office yesterday, to fire up the ol' computer that hasn't been touched in at least four months. . . we gotta work on getting back upstairs, though, as that proved to be a challenge (more on that later . . . )

I've been cooking up a storm—well, okay, not quite a storm yet, as I didn't have to do anything until after P & J left, 'til we ate our way through the week's leftovers. Thursday night, I finally made dinner—Thai Chicken Cabbage soup. . . sofaking good, a spicy, flavorful soup with chicken, cabbage, jalapeños, carrots, cilantro. . . I've been juicing to my heart's content, too, and Bob's been my (mostly) easy-going Official Taster. A sweeter breakfast juice almost every day (spinach or other greens, green apple, a few other fruits), but last night, I tried a V8-ish veggie juice—tomatoes, celery, cucumber, cabbage, dash of lemon. I liked it, our friend Paulie liked it (we're both juicing geeks), but Bob gave it a big fat thumbs-down. . . Paulie and I both tried to convince Bob that sometimes juicing isn't about savoring the flavors, it's about choking down a glassful of goodness, embracing the knowledge that though it may not taste great, it's soooo good for the bod . . . he ain't buyin' it. . .

Our neighbor across the street got our snowblower up and running, even better than it's run, ever. So between that, and the two parties that have been lined up to plow our driveway this winter, we're gonna have the cleanest driveway in the tri-county area. . . he's an amazing man, our neighbor 'cross th' way . .. 75 years young, runs 5+ miles a night (yes, at night), in rain, snow, wind or hail . . . he keeps bringing over various supplements for us to try, juicing books, health and wellness videos, you name it . . . has had his own health issues over the years, and is totally convinced his organic, natural diet saved his life. He's a huge proponent of the "food as medicine" philosophy and in his rough but respectful, blue-collar way, wants to share, to help. . . love this dude. . . he and I could talk juicing recipes all day . . .

Christmas day . . .

Another quiet morning, walked the dogs, started cleaning the house when Penny and Jim arrived, then my mom shortly thereafter. . . I still had to get both Bob and myself showered, dressed and presentable, get Bob's dressing changed and meds dispensed, the house picked up before the holiday "officially" began, though today doesn't feel much different than any other day. . .

Nice, quiet day with family, good food, good company. . . until Bob ventured downstairs for the first time in over 4 months . . . sat at his computer for a good hour or so, I'm sure it felt so good, to be in "his" place again, looking out the windows to the wintry landscape of our backyard, snow so deep even the animals have resisted tracking across the snowy landscape. . . fired up his computer for the first time in many months, gonna take a few days to update all the services—virus scan, etc.—that had expired while he was gone . . .

Periodically, I'd check on him to see if he was ready to come back upstairs. "Not yet," he'd tell me . . . eventually, instead of going down to bother him, I sent a text, "Doing okay?" got one back almost immediately, "No. Just took my first fall . . ." I don't think my feet touched the floor as I flew down the stairs and found Bob sitting on the bottom step. He said he was trying to make his way back upstairs when he missed his footing, fell and hit his head on the concrete floor. He said he was okay, but I about hit the roof when he told me he was trying to make it upstairs by himself. We got him upstairs and into bed, as the trip up was more tiring than the trip down, and he felt he needed to rest for a while. Said the fall scared him more than it hurt, but I'll definitely sleep with one eye and both ears open tonight . . .

As I type these words, I fully realize with heavy heart and acute awareness, that they're just my perspective, my take on things . . . which are dramatically different from what Bob's feeling about all this, and compared to that, my take really doesn't mean a whole lot.

Home is wherever I'm with you. . .

Finally, at long last, my Bobby is home with me. Sleeping in our bed with me, sitting at the dining room table eating dinner with me. Sitting on the couch, watching the morning news with me, as the sun fills the dark eastern sky with glowing lava . . . after four long, sad and lonely months in a hospital setting, he was released from the U of M on Friday, with the harsh, heavy pronouncement from his oncologist, The Lump, that there is nothing more he can do for Bob. That the sarcoma has returned, aggressively, has spread through much of his pelvis, is in operable—too much of his pelvis is now involved—there are no chemotherapy or radiation options left. We ask, what are we to do now? He said, go home, prepare for hospice. . . I look at him wildly, I swear it's all I can do to not fly across the room and attack this man. Instead, I squeeze and twist the kleenex in my hands and ask with a choking voice, "Has there ever been anyone who's overcome such a situation? Who has survived the odds? Anyone?!"

Well, I suppose, in theory, it's possible, The Lump says, almost with ridicule. But not to my knowledge. "So, you're saying there is a chance," I say. He looks at me with distain or pity, I'm not sure which. "That was a joke," I tell him. "Sort of."

My fingers numb, fumble, trying to type all of this, and once again, tears flow like they'll never stop, I don't think they will . . . chest so heavy with the weight of my heart, I can hardly breathe . . . who knew one could cry so much, for so long. . . don't tear ducts just dry up after a while . . .

Driving home Friday afternoon, with Bob beside me, things were almost like "old times." Almost. I drive, Bob sits in the passenger seat (which was usually the reverse, in the "olden days," in the Jeep, anyhow). It strikes me that this is the first time, in over a year, that Bob's been able to sit in a car, upright, with no pain . . . immediately, he turns into his best back-seat-driver-in-the-passenger-seat role, instructing me with the quickest route to get to the bank then home, as though I haven't done this drive a gagillion times over the past year: "take a right here," and "get into the carpool lane—there's two of us, we can bypass the ramp lights"—he should know, he's maneuvered the arterial mess of highways in the Metro for years, in his sales position—his hand outstretched toward the dashboard as we fly along 94, as though preparing for a rear-end accident at any minute. This drive, with just the two of us, one of an endless list of things I've missed deeply this past year . . . one second things are "normal" between us, the next, the reality of the day crashes down and I'm sobbing, all over again, and again . . .

Our drive home, I cry almost the whole way, cursing Bob's doctor, telling him that The Lump is just one doctor, not the only sarcoma specialist, and we won't give up just because that heartless bastard has . . . that I hate the U of M and The Lump, with every cell of my being, for what he—they—have dragged Bob through all year, only to toss him aside in the end, once they were done experimenting on him . . . I hope we never set foot back in that little shop of horrors disguised as the U of M Medical Center . . . that sending Bob home is the single good thing The Lump has done for Bob the entire year he's controlled Bob's destiny . . .

At home, finally, I know we will eventually find our way to a sense of peace and dignity, maybe even some semblance of clarity and knowledge . . . we will regroup, rebuild a routine of living life enveloped in love, good food, friends, family . . . that right now, driving home in the Jeep, in spite of the raging storm of anger, sadness, helplessness, desperation, I feel like I've won the biggest lottery in the world, bringing my grand prize, my Bob, home . . .

Bob's sister, Nancy, flew into MN from Montana Saturday afternoon; Penny and Jim have been here since at least Tuesday or Wednesday. We've all been kind of cocooned out here on Walton's Mountain, getting settled, getting home nursing care set up, cooking up a storm with lots of good, healthy meals . . . trying to figure out what to do next, how to live in this in-between world, where once again, for the 11-teenth time, the rules have changed. Wednesday, Bob was coming to terms with life with a bum leg and loss of other functions. Tough, but hopeful. Friday, he's told to go home and prepare to die . . .

For me to even try to interpret what Bob must be feeling at this point is beyond arrogant, beyond anything anyone will ever comprehend in our lifetime, as much as I wish so badly that I could know . . . all I can do is continue to be with him, to help care for him, to love him, to help him along this newest, most frightening part of the journey yet, and try not to let my heart break so far beyond repair that I'm useless . . . how that'll happen is beyond me . . .

The song from the video above is one that's played in my head for months, nearly every time I've gone to see Bob in the hospital. . .

Home, let me come home

Home is whenever I'm with you

Home, yes I am home

Home is wherever I'm with you

—Home, by Edward Sharp and the Magnetic Zeros

Aching heart, burning eyes . . .

PET scan and biopsy results back today. Both have indicated that the sacral mass in Bob's wound is more cancer, and it's deep, in his pelvis. Right now, that's all we know, but I don't know what else there is to know, or want to know . . I feel I've come to the end of my journey with this blog, that it has more than outlived its purpose, has gone on far too long, without end, and I can't bear to write another entry. Between the immense weight of my heart and the blinding tears that have burned my eyes all day and into the evening, and the spinning, endless thoughts in my head, I'm exhausted and have finally run out of words. I honestly, simply, can no longer keep this up. Maybe, with tomorrow as a new day, I'll have changed my mind, or have found a ghost writer, but for now, I can hardly type through the tears and am having a really hard time making this one make any sense. I hope you understand . . .

Please continue to keep Bob in your prayers . . .

love! to all

Jen

Tests, tests and more tests . . .

So, has everyone shoveled their way out of the MOAS's yet? (As you can see, I'm resorting to acronyms, since being back at the U. In case you don't know, MOAS is short for Mother Of All Storms. I made it up, but you can use it, if you wish). I am eternally grateful for a few neighbors who helped rescue me from the canyon of snow that is now our yard. I feel like we live in an arctic fortress . . . Our snowblower now doesn't work, not sure what's up with that; fired right up with the first big storm we had. Now, nothing. Our neighbor across the street, a retired mechanic, has been working on it, hoping to have it up and running again for the next round. If not, I am SOL . . .

Sitting and waiting, here at the U, goin' on a week now, for all the latest scans and tests to be done. "As long as we have you here," has its pluses and minuses. Since last Monday night (when he first got here), Bob's had an ultrasound on his leg, an MRA, an MRI, is going down, as I type, for another ultrasound on his lower extremities . . . he'll be getting a PET scan in the next day or so—it's scheduled for Wednesday, but if a cancellation happens, he may get in sooner. Trouble is, he can't eat or drink anything but water six hours prior, so it's hard, if not impossible, to plan for a cancellation, like what happened this morning. I told him to just starve himself from now till Wednesday, in the event another cancellation opportunity pops up, we can seize it. He looked at me, with a Tootsie Pop hanging from his mouth. Yeah, right.

Beats being shuttled back and forth from Bethesda to the U for all these followup procedures, but also means a lot of sitting around, doing nothing. Not even PT or OT, believe it or not. They did come in and assess Bob last Friday, but we haven't seen 'em since. I'm tellin' ya, the U's therapy programs are slipping. Our last gigs here, they were the first ones knocking on the door, trying to get in to see Bob. Even when he was in the ICU, with tubes running in and out of every orifice, therapy popped in, crackin' the whip, "Hey Bob! Let's get you moving! I know you're unconscious at the moment so we're kinda limited in what we can do, but every little bit helps!" I'm sure the weather has them a bit short-staffed, but I'm just not used to being neglected like this (from them, anyhow). . .

The ultrasounds are being done to monitor the clot (DVT) in Bob's right leg, and to check out his left leg, as that's showing some signs of swelling as of the past few days, as well. His right leg is still absolutely ginormous and to me, looked even more swollen today, if that's possible. We've been told that it can take months for the swelling of a DVT to go away, so they aren't too alarmed that it's been like this for a month now, but did order another ultrasound, to monitor the progress of the clots.

Overall, I think Bob looks more "puffy," in the face and abdomen, as well as the legs, and mentioned it to the doctor rounding this a.m. Docs said it's most likely due to the additional, continuous fluids Bob's been getting for the past week, so they've discontinued the IV fluids (under the condition that Bob be diligent about drinking adequate water/fluids on his own), and are confident much of the extra swelling will dissipate.

The fluids were being given because Bob's blood pressure had been quite low and his heart rate has been running high, though that's been an ongoing thing since his first heart attack, maybe longer, even. . . another li'l conundrum in the big complicated picture, trying to balance all that, and ruling out all other possible causes, as well (thyroid, steriods, the fact that Bob is super-deconditioned, being ill for so long, all of the above, none of the above) . . . he's super-sensitive to his blood-pressure meds—a little too much makes his BP plummet (as does dehydration), but the cardiologists' general consensus is that he needs to be on them as his heart heals. He's been so susceptible to dehydration, which can add to the low BP/high heart-rates, among other even more serious side effects. A never-ending balancing act. . .

An MRA is like an MRI, but is used to view the vascular system of the body. Doc Writes-On-Her-Pants ordered it, because eventually, she will be the one in charge of what will be done with Bob's wound, be it a flap procedure or something else. She needs to see what the blood supply in the tissue surrounding the wound is like, if it's healthy and adequate to be able to sustain a flap. There are many reasons to do this particular procedure; in Bob's case, it would be done to help with the final healing of his deep wound. Doc WOHP would use healthy tissue, with its own blood supply still intact (the big diff between a graft and a flap; a graft doesn't have its own active blood supply) from an area near the wound site to "fill in" the remaining spaces in the wound. A healthy blood supply is needed for the procedure, hence the MRA, to see if the tissue surrounding Bob's wound site could provide this. The things I learn when sitting for hours and days in a hospital . . .

The colorectal team ordered the MRI, because they want as much information as they can get about the wound site, so when they do decide what to do (they will be part of that team), it's based on sound, solid information. They also finally got the CT scan from Bethesda, so those scans, along with the PET, should give the teams what they need to figure out the next step.

The PET scan is the one I'm most worried about. This is the test that will tell us what the unidentified tissue mass (I'm going to give that my own acronym, UTM) in Bob's wound is, hopefully. PET scans detect cancer cells (among other things), and will hopefully rule out that the UTM is more cancer. . . funny (not in a ha-ha way . . . ), that it never occurred to me that the mass could be more cancer, and I've been watching it grow, have seen it from day one, every time dressing changes were being done at Bethesda. No one else ever suggested that possibility, no one else ever seemed too concerned about it; in fact, most anyone who's ever looked at Bob's wound site has gushed on and on about how "beautiful!" and "clean!" and "healthy!" his incision site is. Even when I have been pointing out, all along, ummmm, that big lump there—is it supposed to be like that?! All along, have been assured that things looked just great! That at some point, someone will have to figure out just what that mass is, and what to do with it, but for now, we were told, things are progressing just fine! So maybe that's why I never questioned it . . . you think by now, I would know better. . .

And maybe it is just that, fine. As I've said before, the hardest thing in the world to do is to not freak about the unknown, all year long, that's been my mantra, whether or not I've always been good at heeding it. Doesn't help, and is wasted energy. But this time, it's hard, harder than it's been all year, for me to adopt that mentality. Lots of deep breathes are being taken over here, lots of tears being squelched, lots of thoughts being shoved back to the far corners of my mind. . .

Quite honestly, I believe Bob is handling all this better than I am. Right now, the UTM is an unknown, and until we know more, there's nothing to get worked up about, is how he's essentially responding to it. In fact, his spirits have been pretty upbeat. He has his fave rocker chick-nurse on staff tonight, and has been joking with her and the rest of the staff all day (this afternoon, when the cardiology team was discussing, very seriously, the potential cause of his rapid heart rate, Bob piped in, "Hey! I'm just very excited to be here again!"), very engaging, responsive, interactive more than I've seen in so very long . . .

I need to take his lead . . . or maybe some of the meds he's on . . . deep breath . . .

A little disclaimer . . .

I sincerely hope that no one ever takes personal offense to anything I write on this blog. . . it's never directed at any one person or situation specifically . . . yesterday's rant was just that, an angry rant at a whole year of events that doesn't make sense, doesn't get better, doesn't go away. . . it's what happens when I'm snowed in for hours, can't leave the house, have too much time to think about all this. Tried to keep busy, shoveling the walks, cleaning the house, but that only goes so far before the thoughts start creeping back into my li'l peabrain. The blog has become my virtual punching bag, to help me release some of the anger, sadness, fear and everything else that goes along with this big ugly mess. . .

We've traded one set of issues for a whole new set, post-surgery, thrust into new, unchartered territory—for us as well as Bob's doctors—and along with it comes a while new set of frustrations, questions, scary potential outcomes . . . and my heart is, once again, broken, seeing Bob go through yet another "set back," hearing more stuff that isn't something positive. . . Just once, I'd love to see a monumental leap forward, to hear some really great news, for someone to finally say, "Bob, you are cancer free! We know this is going to be a long road of recovery, but all the hard work is going to be worth it!!" At no point, in this year-long journey, has anyone said anything even close to that.

And now, with this new issue with the wound, the mysterious mass that's developed, brings a tsunami of new emotions. . . a whole new battery of scans, biopsies, tests, doctors, days in the hospital, questions, concerns . . . sometimes a girl's just gotta let some steam off, or she'll explode. Or maybe implode, from the sheer enormity of it all. . .

So now, gonna go let off some more steam, try to shovel and snow-blow my way outta here, so I can get to the hospital to see Bob sometime today. Hopefully before sundown . . . thanks for letting me vent, peeps. Like it or not, if you're following this blog, you too, are in for the long haul . . . and are gonna get all of it, the good, the bad and the ugly, as I see it and feel it, along the way. . .

xxoo j

Winter Wonderland . . .

So, I've started and stopped this one countless times in the past week, and still don't know how to continue. But since I'm snowed in and have nowhere to go right now, I'll give it my best shot . . .

No one person on the face of this earth should ever be dragged through the complete and utter shit that Bob has been dragged through for the past year. It simply does not end, and I'm so tired of updating this blog, because it doesn't end—ever, ever, ever . . .

And I can't even begin to give 'the situation' justice because it's layer upon layer upon layer of shit upon shit upon shit . . . but since I made the decision, a year ago, to maintain this blog as an effort to keep family and friends abreast of Bob's condition, I owe you, at the very least, an update on the latest, so I'll trudge through it as best I can, for Bob's sake, for your sake . . . .

Being back at the U is a huge bummer and a golden opportunity at the same time. But, before anyone goes and gets all happy-go-lucky with the, "See, Jen! We were right–everything happens for a reason!" shit on me, I'll be very quick to inform you that, "No, that is NOT right. At all. Period. That plain and simply, SHIT just happens in life, and it is YOURS, MINE and OUR responsibility and duty to MAKE reason and meaning of the shit, not the other way around."

I've finally figured out why that platitude has annoyed the livin' hell out of me. It's all backward, completely back-assward, peeps . . . Things just happen. It's up to us to figure out how to react. . . and sometimes, despite our best efforts, things simply do not turn out how we want them to. Shit, sometimes, just happens . . .

Bob was making such awesome progress at Bethesda, and the bleeding issue that sent him back to the U was a huge downer, but presented the perfect opportunity to demand some follow-up by all of the teams that had been treating him pre- and post-surgery. Follow-up that should have been arranged by someone at the U, weeks ago . . .

The bleeding from the surgery site was exacerbated by the fact that Bob's been on Coumadin to treat the blood clot found in his leg about three weeks ago. Previously, when he had bleeding issues, they were fairly easily controlled. One more example of the delicate balance, of how astute one needs to be, with Bob's situation. On Monday, when the bleeding started, nothing could be done to stop it, and believe you me, they tried. All day and into the evening, dressing change after dressing change, no end in sight . . . the situation finally prompted the house doc to send Bob to the U of M ER. Made the most sense to him (and to us), being the U is most familiar with Bob's history, and would likely (hopefully) best know what to do in his case.

By Tuesday morning, when I got back to the U, Bob looked alarmingly ill—pale, weak and shaking, he could barely lift himself from the bed, much less to his wheelchair. And just the day before, he'd had such a rockin' day at PT . . . Yes, I freaked. I called his nurse in and asked her to get anyone and everyone on staff in here right away, as this was not how Bob was less than 24 hours ago and it seemed he was going downhill fast. . . So who walks in the door but Dr. Suave, the repugnant doc who "oversaw" Bob post-surgery a few months back. Immediately, he starts spewing crap that sounds oh-so impressive, but has nothing whatsoever to do with Bob personally. He starts talking about holding all the blood thinners (aspirin and Plavix, included), to stop the bleeding. "You will not touch any of Bob's blood thinners until you discuss it with his cardiologist. Nothing!" I tell him. He seems a little taken aback at my insane reaction . . .

Needless (or maybe needful?) to say, Dr. Suave at least had the sense to back out graciously, and from here on out, we've seen no one but those who have a fully vested interest in Bob's case. The huge issue, with Bob's situation right now, is that there is some "unidentifiable" tissue protruding from the wound site. . . the first doc at the U to actually look at it said it doesn't look like bowel tissue to him, which is a whole new perspective. Good or bad, we don't know. It could be that new tissue is simply forming in the wound site that has a different "look" than the rest of the wound, could be something entirely different . . .

As of yesterday, Bob does look so much better, sounds so much better, and even feels a helluva lot better than he did upon arrival Monday night. And, I am so very grateful that the team that admitted him (or rather, under which he was admitted. Believe me, two very different things. Makes no sense to you, me, even the people who "admit" him, fucked up system that it is. . .), is being very diligent in keeping a very close eye on him, ordering as many tests, scans, etc. as they feel are necessary to move forward. Looks like Bob'll be at the U through the weekend, at the very earliest, a Tuesday discharge back to Bethesda . . .

I didn't go into the U today, due to the raging blizzard sweeping across the state today. Hopefully tomorrow, the snow will have dissipated and I'll head in. . .

Readmitted to the U last night...

Bob was readmitted to the U last night; wound site started bleeding yesterday morning during PT and he lost an incredible amount of blood in a very short time. . . many attempts made to control it, all day, to no avail. Continued bleeding all day, into the afternoon and evening. . .

As many may remember, this has happened several times in the past few months, but they've always been able to stop the bleeding, crisis averted. Wasn't happening yesterday. I left for a couple hours in the afternoon, to go feed the dogs and to pick up some sandwiches for dinner, and when I returned, Bob told me the doc on staff at Bethesda for the evening made the executive decision to send him to the U's ER, as his hemoglobin levels were dropping, INR numbers were quite high (this number represents the clotting ability of the blood), bleeding was not stopping. I like doctors who err on the side of caution in Bob's case. . .

Because Bob has been on even more blood thinners due to the clot in his leg, his blood is very thin and even a minor injury that results in bleeding can turn into a major event. Don't know why the wound site started bleeding—could have been as simple as being irritate during the CT scan yesterday, being in his back on a hard surface, could be that the new tissue, being so fragile, was irritated somehow during PT, who knows. We do know it doesn't take much to tip the scales.

So, we ended up in the ER last night, and six hours later, Bob was brought up to 7D, his ol' stompin' grounds. Even has one of his "old" nurses, who has been taking incredible care of him...

Overnight, he's become increasingly distressed, high heart rate, increased pain in his leg and pelvis, chills and nausea (though no fever), increased weakness...not sure if it's "just" (and I say "just" meaning not JUST "just," because nothing is ever just "just," if you know what I mean . . .) due to the blood loss, and that once that's addressed, things will calm down, or what . . .

A few teams of docs have already been in this a.m.—colorectal, cardiologists, a re-appearance by one of my least-fave docs at the U, Dr. Suave—but other than being on "observation status," not much happening. Bob's finally resting now, after a long, stressful, sleepless night, whiney roommate, here we go again . . . more updates later. . .

Winter wonderland. . .

Thought I'd start this blog on a feel-good note, with a pic of our sweet snow dog, Gaia, that I just snapped tonight . . . we're getting the most beautiful snowfall, a soft but steady powder that's been falling since mid-afternoon and hasn't let up. Gaia went outside after eating tonight and hasn't been inside since. She's truly in her element. . . I've got candles in the fireplace, a cup o' tea, Rocco has finally settled down on the recliner, peeking at me occasionally with one eye. . .

Bob had an appointment with the urology clinic at the U this afternoon, the first in a parade of post-surgery follow-up appointments his doc at Bethesda lined up for the next few weeks. It's been three months since his surgery, and we weren't given any sort of game plan from the U, upon discharge to Bethesda, no check-in or follow up from anyone, not even Bob's primary at the U. We did had a few follow-up appointments that had to be rescheduled due to the extended stay at Bethesda, and his cardiologist's nurse called a few weeks ago, just to check in and see how we were doing and to let them know if there's anything they can do for us (the only department from the U that's done that, btw), but no one from the U has picked the ball back up and gotten the game going again. That's now become the job of Bob's primary doc at Bethesda, whether or not it's the way it was supposed to have been done. I do have to give kudos to that man; he is definitely a get-things-done kind of guy. No wonder he's chief of staff of the joint—maybe they could give the U a few lessons in patient care management . . .

Anyhoodles, a hospital van transported Bob in his wheelchair, and I got to ride shotgun. It wasn't snowing when we got to the U at around quarter to two, but when we emerged from the basement-level clinic an hour and a half later, the snow was falling fast, turning the outside view into a gauzy, almost black and white scene. Just in time for Friday rush hour. We waited nearly an hour and a half for the van to return for us, and had nearly as long a ride back to Bethesda, traffic was so thick, in all directions, all roads. The freeways had turned into parking lots, so our driver took University back to Bethesda, which was also painfully slow, but he was an entertaining guy, which helped pass the time.

We didn't get back to the hospital until after 6 pm, which made for a long afternoon, and meant Bob missed dinner. Well, it was still waiting for him on his bedside table, but had been sitting there for a good hour or so. At least the sandwich was salvageable, along with some cheese and crackers Penny and Jim had brought up and left with Bob. Dinner of champions. Or not. We split the sammie, sliced some cheese, just as we were sitting down to eat, a brand-new doc walked in, introducing himself as an oncologist with HealthEast.

He was sent by Bob's primary to see what he could do for us from an oncology standpoint while Bob is still at Bethesda. I jumped right in (see, I've developed this nasty li'l habit over the past year, of taking on the role of Bob's Official Spokesperson, even though he's now very well capable of doing so himself. I try to catch myself and allow Bob to speak first, but the trouble is, much of what these doctors ask about are of events and details of which Bob remembers very little . . .), and tell him that we have yet to have any sort of followup with so many teams of Bob's, particularly the oncology team. Part of that is due to the nature of the situation—Bob had to definitely get stronger and more stable, and have some good healing under way before most of the specialists involved with his situation could even start assessing where to go from here.

We already know that the chemo had done nothing to shrink the tumor, and my biggest concern/fear is the fact that in the time that Bob's surgery had been postponed due to the heart attacks and junk, the tumor had grown into a major vessel that leads to the lungs. This is primarily how sarcomas spread, via the blood, to the lungs. That has been the big black cloud hanging over our heads for months now, that we don't know anything about that. Has it spread? is the million dollar question . . .

The doc tells us that scans can be done, but even if something is found in the lungs, there's no way Bob could undergo any chemo at this point, with the open wound he has. It would never heal, would likely become severely infected (chemo lowers the body's resistance to infection by lowering white blood cell counts), and other complications would ensue. He was already aware that Bob had very severe reactions to chemo in January/February . . . But there may be other things that could be done, if lesions were found in the lungs or elsewhere, he said.

"Well, I think it'd be better to know than to not know," I said. "Time keeps passing by, it's been three months since the surgery, and many months since Bob last had chemo. It did nothing to the tumor, but I'd like to believe it at least did what it was supposed to elsewhere in the body, to keep the cancer from spreading. I mean, it's hard to be here, doing all the therapies, trying so hard to recover from the surgery, and to not know this very critical piece of information. For peace of mind, if for no other reason" Doc said he can order a CT scan and a bone scan, both tests would tell us what we need to know. He asked Bob what he thought, and Bob nodded definitely, that he wanted the tests done, to fill in that piece of the puzzle. Doc said he'll put the order in, the tests might be able to be done over the weekend, but if not, early next week, at the latest.

Next week, appointments with colorectal team (and possibly plastic surgery as well as orthopedic surgeon), another urology follow-up, and a few tests ordered by the oncologist at Bethesda, a CT scan of Bob's chest, abdomen and pelvis and a bone scan. Busy, busy, busy . . .

Days tick by here in Bethesda, one day folds into another seamlessly, can't tell when one starts and the other ends, can't believe it's December 2nd already. Bob's Giant Leg is ever-so-slowly improving, still gigantic, nearly twice the size of the other, still heavy and cumbersome (adds a good 15+ lbs. to his weight), still can't wear a shoe on it, which not only means his foot is not only huge and clumsy, but he also can't wear the AFO (ankle-foot orthotic), which means his right foot/leg is rather unstable, making PT and OT exercises especially challenging. But, the leg itself is "softening up," and the fluid is slowly starting to disperse (before, his swollen leg was so taut and hard, it felt like my fingers might puncture his skin when I'd lift the leg to help him into bed), and speaking of getting into bed, Mr. Determination is hoisting himself into bed these days—an impressive event to witness, and one of these days I'll try to remember to capture it on video—and the pain that started along with the clot has faded. In spite of the swollen appendage that doesn't seem to be going away any time soon, Bob perseveres. It's how he rolls . . .

Bob's doc ordered lymphedema wraps to be done on Bob's Giant Leg, a non-invasive treatment, to assist in the dispersing of the fluid. His doc believes that much of the swelling is not just the blood clot, but also due to the surgery and condition of Bob's right leg—that most likely lymph nodes were damaged and/or sacrificed in the extensive surgery, which inhibit the limb's ability to circulate fluids, and may be a permanent condition that he'll have to deal with. The treatment consists of wrapping his right leg, each individual tootsie all the way up his thigh, in 3 layers: a gauzy, sexy toe-less thigh-high stocking, followed by foam padding, then ace bandages. The compression of the wraps help to push the fluid back up into the body, to be recirculated and redistributed. This will be done three times a week, which makes getting showers in especially tricky, because we need to sneak them in before the wrap therapy and MIST therapy, and somehow in between multiple PT and OT sessions and the stream of doctors who vie for his attentions.

Penny and Jim came up today, went with us to PT, for the first time, ever, to see first-hand, how Bob rolls. A big f'n deal, you see, because Bob's been incredibly self-conscious about his therapies—a big ol' mixed-bag of frustrations, embarrassment, grieving, anger and god-only-knows-what else goes into each 1/2 hour of therapy, in spite of the progress he makes with every session he endures. Even having me there was tough for him, in the beginning; he didn't want me to see him in this condition, to witness how much his broken body couldn't do. So, finally granting Jim and Penny "permission" to attend therapy with him today was a big deal indeed. I could tell they were so in awe of all he can do, of the truly astounding progress he's made and how strong he's getting, but I can bet they were also thinking, as I always do when I see Bob in motion, that this body is so far removed from the man who used to hike state park trails and kayak lovely, lonely rivers and walk his dogs and go camping with his wife and strap his cameras to his back and head out into the woods for hours on end . . .

It's hard to explain the limbo state Bob's in now—in some ways, he's better than he was pre-surgery. Very minimal pain (and nearly narcotic-free!), he can sit and lie on his back indefinitely, but at the same time, he's light years behind what he was even right up to the surgery. Pre-surgery, he could shower and dress himself, he could get around the house, slowly but surely, by himself. He could get in and out of bed. All functions in his pelvis simply worked. Not so much, now. It's as though we traded one set of crap for a whole new set of crap, with new rules, new complications. And right now, so many unknowns still left up in the air, still trying to get all the follow-up appointments with all the specialists who have yet to see him post-surgery, to get the game-plan going for moving ahead. But, still, every day, in the midst of it all, there is tangible, breath-taking progress. Like getting himself into bed.

Bob's Physical Medicine and Rehab doc—a man who annoys the livin' hell out of me—says the most inappropriate things at the most inappropriate times, talks so fast as though his life depended on it, talks over everyone else, giggles like a schoolgirl at his own jokes—was in yesterday to tell us about a urology appointment/test he had set up for Bob at the U, something called a urodynamic study. It's a series of tests to study the functions of the urinary tract, to help determine if there's any nerve damage, function impairment, etc., the extent of it and what should/could be done to treat the condition(s). He goes on and on to say that it's really no big deal if Bob ends up having to self-cath himself if "things" don't work any more. "People do it all the time! They can go on international flights! They can go hiking! They can go biking! They can do pretty much anything they want to, so I hope you're not freaking out that this is a big deal or anything, if that's what they find out—"

I look at Bob, who's looking at his hands in his lap. Doc R continues, "I see patients all the time who have to do this! They get it down to a science and then it's nothing! Actually, self-cathing is actually healthier, because you can drain your bladder much better, because you know, we males start to lose urinary capacity as we age, due to enlarged prostates and such, so, if you end up having to do this, it's really no big deal! I hope you don't think this is the worst possible thing, because it really isn't—" he actually stops his run-on sentences to look at Bob.

"Are you following what I'm saying to you, Bob?" Bob barely nods his head, still looking down. "You really need to find it, in your heart, to be okay with this, if it's what ends up happening. I mean, somehow, you just have to—" Bob continues to look at his hands in his lap, never once looking up to make eye contact with Dr. R, and I can't stand to listen to him talk up self-cathing like it's, well, like it's no big deal.

I interrupt. "I'm sorry, Dr. R, but with all due respect, I don't think you have any idea of all that Bob's gone through this past year—not a clue. And now you come in here, all happy-go-lucky, and him it's really no big deal! that he might have to shove a straw up his penis every time he has to pee from now on. Easy for you to say, so easy for all of us, to tell Bob that all of this crap is no big deal, that it'll all be okay! because we're not the ones living with the endless life-altering "no big deals" . . . I'm sorry, but right now, that kind of information isn't something you dump on someone who's been through all Bob's been through this past year, and expect him to "find it in his heart" to accept it, just because you, who will likely never have to shove a straw in your penis to take a piss, tell him to . . ." And besides, something like that shouldn't even be discussed, until after tests are done, till more is known . . .

I can feel my ears burning and hear my voice cracking, but Dr. R is suddenly, finally, silent for several moments. "I see. I see . . ." he eventually says, and for the first time, I think maybe he does. Or maybe it was just that we were interrupted by the OT who had come to do the lymphedema wrap on Bob's leg. Dr. R stands, reaches his hand out to Bob and says, "Well, let's wait till we get the test results to finish the conversation, shall we?" Bob nods and Dr. R quickly excuses himself.

"I'm sorry," I say to Bob. "I just hated to sit here and listen to him say all that shit to you like that, the way he did. It was so insensitive, so truly obnoxious . . . " We weren't able to talk much about it, since his wrap was about to begin. . . just one more thing . . .

Warning: Emotional Rant of a Completely Unrelated Topic Ahead! Turn Around—NOW!!!

So, my latest hobby has been spending endless hours of the past few weeks on the phone and sending e-mails to COBRA (well, technically, to an out-sourcing company called CBIZ, who administers the COBRA plans for Bob's former employer) and Social Security, begging and pleading for an extension for Bob's coverage. His coverage with COBRA goes through April of 2011, but being the jacked-up system that it is, we missed the deadline to request the extension, even though he fulfilled the other two "rules," and still has over FIVE MONTHS LEFT OF COVERAGE!!! I mean, c'mon! I could see if it were ready to expire but a half a year left and it's too late to ask for that extension???!!!!! DOUBLE-EWE! TEE! EFFF! (like how I'm trying to disguise my foul mouth here? Believe you me, it ain't easy)!!!!!! Incidentally, Bob had asked about it, months ago, back in the spring after his first heart attack, when he realized he just might be needing that extension, but was told he wasn't eligible, because he hadn't been deemed disabled by SSA yet. Penalized for being too proactive. . . Soooooo, in the time that we're waiting for SSA disability to go through, Bob has another heart attack, countless critical setbacks, weeks in and out of the hospital, eventually the 13 hour surgery followed by months recovering in Bethesda. Somewhere, in the middle of that, I should have stopped all that I was doing, rifled through Bob's COBRA/CBIZ info and figured all that shit out . . .

So, now it's now December (well, was November when I started all this). Still, much longer than 60 days past The Date . . . I was told by CBIZ to still send the SS disability letter, which I did, then was told it wasn't the right letter, didn't have the right dates on it. Called SSA office, was told there is no other letter and they have no idea what I'm talking about, but will send another copy of the letter and add the dates CBIZ is asking for. Send it in, only to be told, sorry, can't grant the extension because it's past the 60 day mark . . .

Next option: contact Preferred One, Bob's provider, to see if he's eligible for a "conversion plan," which means that after the COBRA period is up, he may be able to convert the plan to an individual one with Preferred One. Several phone calls later, I'm told he is eligible, but they can't tell me what kind of policy it will be or how much the premiums will be until April . . . they suggest calling CBIZ back, ask to speak to a supervisor who may be able to make an exception in Bob's case . . . call CBIZ back, talk to a supervisor, who asks me to have SSA send another letter that states the specific date Bob was deemed disabled, because that's the date they are looking for. I tell her the letter I sent already had that information on, and SS said there is no other letter they send out . . . But, I call SSA anyway, the (believe it or not) very nice woman—sooo wish she had a direct line—on the other end once again told me there is no other letter than the award letter, but asked me to read to her, word for word, the e-mail I received from CBIZ, stating exactly what they want, and she'll send a letter stating that information exactly. I call CBIZ supervisor back, tell her what I'm told, she said in the meantime, she'd already contacted Bob's old employer who told her that they won't make any exception to extend Bob's CBIZ coverage if we didn't follow "the rules" to the letter. . . it's only by the grace of God I still have hair left on my head and the windows of my house haven't been shattered by flying chairs . . .

I know you all haven't following a word of this rant, and that's totally okay, but I just need to get it out because I just have to, or I will implode . . . the internet version of scream therapy. Because along with all the awful, awful shit that goes along with a long-term critical illness, this kind of shit just has to get dumped on the pile, just in case all the other shit isn't enough . . . and I know it will all work itself out, that we just have to keep plugging away, work on figuring it out, and we won't be without insurance, and the world isn't going to end just because of this stupid mess . . . but sometimes, just once, I'd sooooooo love for something to go just as it should. Just once, 's all I ask . . . Okay. Pity party over. Time to wipe the tears on the back of my dirty hand, pull up the big girl panties and move on. If you made it this far in the blog, you deserve a HUGE hug from me next time I see you. . . bless your sweet heart for listening. I feel better. Much.

xxoo j

We interrupt this blog for the following announcement . . .

We, the Robert Andrzejek Benefit Committee (for lack of a better name . . . we're open to suggestions—the We Love Bob and Jen Committee might be a good one . . .) have hijacked Jen's blog (actually, it involved wrestling it away from her. You know, Jen, she's a little feisty) for a moment to bring you news of a benefit event to be held in Bob's honor.

The RABC is a group of friends and family organizing the event for Bob, which is still in the planning stages. We have a site and a date, and even a separate blog dedicated to the event, www.buboman.blogspot.com. Here, you will be able to check out all the latest updates on the event. We've also added a permanent link in the upper right hand corner of this blog (the box with the cute baby owls), for you to click on at any time, which will bring you right to the benefit blog.

The benefit blog will be updated as planning progresses. Thus far, we have the date: February 13, 2011 from 1 to 7 p.m., and the location: Throwbacks Grille and Bar in Woodbury. We're planning live music, a silent auction and who knows what else!

So, save the date, and stay tuned! We now return you to your originally scheduled blog . . .

A beautiful, cold, November weekend . . .

Saturday, November 27, 2010

Happy Thanksgiving everyone, a few days late! We had a really nice turkey dinner at Bethesda, despite its source being the hospital kitchen. They must pull out all stops for this one meal—we were treated to turkey and all the trimmin's—mashed 'taters, sweet 'taters, dressing, cranberries, at least three kinds of pie . . .

Penny and Jim came up Thursday morning, stayed till late Friday afternoon. They were going to try to be here Wednesday, but southern MN was pelted with the freezing rain we were supposed to get, so they stayed put till traveling was safer. We, thankfully, didn't get the freezing stuff that threatened to coat the metro area with a thick glaze of ice. Just an inch or so of snow that started late Wednesday afternoon and ended sometime early Thursday morning.

Nuisance snow, I call it—not enough to justify firing up the snow blower, but enough to warrant shoveling, to keep it from turning into an icy under-layer if driven over. Which wouldn't necessarily be a bad thing in my world, if we had a short, flat driveway. But we don't. We have a long, U-shaped drive, with steep inclines on both ends, which turn into slick ramps when ice builds up on them, and I'd never get out of this joint if that happened. Which did end up happening, because I didn't get a chance to start shoveling until Friday morning, and by then, the thin layer of snow had been driven over several times, pressed into sleek tracks of ice.

So grateful to have Penny and Jim here, to help me shovel and chisel my way out, or I'd be stuck here till spring thaw. . . Jim helped shovel and break up the compacted snow while Penny stayed inside, doing some last-minute cleaning for a showing of the house on Friday . . . where would I be, without those two . . .

We got to Bethesda before noon on Thursday; Bob got a hall pass to leave his room and join us down in Bethesda's on-site cafe for the holiday meal. The cafe usually has a fairly decent offering of grub— for some reason, often a helluva lot better than what the patients are served, though they come from the same kitchen. Usually at least 2-3 main entrees and sides to choose from, along with various grill items and a fairly impressive salad bar and sandwich bar, and the patients always have the option to order meals from the cafe if the hospital menu isn't appealing.

On Thanksgiving, though, it was just turkey dinner (with a vegetarian lasagna option for non-meat eaters/non-turkey lovers). The four of us loaded our plates and brought them to a table in the dining room, where we ate in the cozy confines of the cafe. There were some staff members enjoying the meal, and a few other families, also celebrating the holiday with their own loved one/patient. One family, in particular, caught my attention; a big group, 10-12 people gathered around several cafeteria tables that had been pushed together to make one long one. Grandpa and grandma-types all the way down to kid-types. The guest of honor, the one toward whom everyone directed their attention, was a woman seated the head of the table. She was in a high-tech wheel-chair, wearing a protective helmet (could be for a number of reasons—perhaps she has severe seizures, maybe a serious fall-risk); she appeared to be paralyzed, at least to some degree . . . Her hands looked weak and atrophied, both were encased in some sort of brace, up to the forearm. The braces seemed to hold her hands straight, to prevent them from contracting, curling up toward her wrists. I could see that when she talked, it was a labored effort. . .

Another couple at this large gathering had two infant car carriers, each with a tiny baby inside. The babies were passed around to the guests and eventually brought to the head of the table, where the woman in the wheel chair sat. I saw her tip her head and smile at the babies, as they sat in their carriers in front of here, but she couldn't even so much as reach out to touch them, just smile.

A few PTs who were also in the cafe, came over to ooohhh and aaaaahhhh over the babies. I overheard the woman who was hauling one of the carriers, the one whom I'd assumed was the mom, reach over and rub the shoulder of the woman sitting in the wheelchair and say, "Mary here is their mom—they're twins, seven weeks old . . . "

Wow . . . I couldn't get my mind off that scene all day . . . still thinking about it . . . I've seen Mary before, in the PT room when Bob has had therapy; someone is usually with her, a family member, but I've never seen the babies before. All day long, I wondered what could have happened to Mary. Did she have a stroke while giving birth? Was it a terrible accident that severely injured her and sent her into early labor? Of course, I couldn't expect a staff member at the hospital to divulge such private info, as much as I wanted to know (though, if we had been at the U and had been a roommate of Mary's, we would've known her medical story inside and out, thanks to the parade of docs who exercise complete disregard of a patient's privacy, blabbing personal medical info, as though no one else were in the room . . .) Mary probably has yet to hold those sweet bundles of love in her arms . . . or maybe she has. Perhaps, in the privacy of her room, when she's lying in bed, someone brings the babies to her and lays them on her chest and lifts her arms for her, to encircle the tiny bodies. So Mary can feel the warmth of their skin and they can feel the beating of her heart, so each knows that they are of one another, that they belong to each other . . .

I send a pathetic little prayer upward and outward, toward Mary and her family, with the deepest hope that she makes a full recovery, so she will one day cradle those tiny babies in her arms . . . and am reminded, with glaring clarity, I, as so many people who know Bob, am at loss for words . . . I do the same, with endless patients I see at Bethesda—the young man (late teens? Maybe 20, at the oldest?) in the wheelchair, appears to be quadriplegic, with three very devoted sisters and parents, who are always by his side, in therapy, in the hallways . . . or the handsome young man who is in a body brace and a very complicated-looking wheelchair, with legs so thin and frail, always sporting a protective helmet, always seems to be sleeping when he comes down to therapy (once in a while I see his eyes open, but have yet to see evidence that he can speak). Or the man with two prothetic legs, trying to learn to walk again, or the woman with the short, spiky hair (is that how she wears it? Is it chemo-induced? was it cut for a surgery?), who looks around the room as she waits her turn for therapy, who sometimes makes sad eye contact with me, sometimes crying softly as her PT softly strokes her arm, gently coaxing her to please try to do the exercises he's asking her to perform . . . I am helpless, even neck-deep in our own shit, at a loss . . .

It's an emotional place, Bethesda. I'll never know the stories behind the broken bodies and souls and lives of those who share the the space Bob has called home for over a month. . . I met a woman in the elevator, on my way up to Bob's room yesterday. I've seen her several times. She's often standing outside a room down the hall from Bob's, gazing out the window. I say hi to her as I enter the elevator. Your home away from home, too, huh? I say. She gives a little laugh. "Yeah, my husband has been here for five weeks; was in the hospital for a month before this . . . " I respond with a weak, knowing smile. I could have said, We're going on seven weeks here; my husband's been in the hospital for three months . . . but I don't.

It's a funny phenomenon, I've noticed, in hospitals. Toss someone a little line and the stories come tumbling out, in a deluge . . . everyone's story is the worst story ever, in their world. And in their world, maybe in the whole wide world, it is true . . . stories of accidents, illness, horrible tragedies that no one could have predicted, planned for. . . to ask about it is like pricking a balloon and bursting the pent-up pressure, usually . . . but I don't respond like that. I can't. Because if I did, I don't know if I'd be able to stop. Besides, the elevator reaches our destination—third floor—quickly, and the doors open to let us out before I can begin. Saved by the bell. I smile, though not really smiling, knowing, as I feel like I'm the author of measuring life in increments of days in ICU or weeks in the hospital . . . But I don't offer much more. "Try to have a good day," she says, as she exits, and again, I know exactly what she means. You, too, I say, as we exit, toward the rooms where our husbands are waiting.

A few days ago, on Thanksgiving day, I believe, Bob told me he got chewed out by his nurse. What?? Why?!? I asked, alarmed. "Because I got up and went to the bathroom by myself. Twice." Shut the hell up! I burst out laughing. You did not! "Did too. I had to go, and didn't want to wait around for someone to show up and help me." Well, even though your nurse was probably mortified, she was also probably secretly ecstatic at your defiance, I say. It's a sign of of progress! "Whatever." he said. "I just had to go. She told me to promise never do that again, I told her I couldn't do that . . ."

The other day, Bob walked up a whole flight of stairs, 10 steps, and came back down again. His PT was by his side, but was just spotting him, not doing any of the work. We both looked at Bob in awe when he had finished. "I think you're holding out on us, Bob," she said. "I'm gonna have to come up with harder things for you to do. Even with your big ol' leg, you're surprising me how strong and mobile you're getting. . ." He also practiced getting in and out of a car (made it look like a piece of cake) . . .one of these days, we'll practice getting into the Jeep, as it's higher than the car that's used in PT. . .

Doc Writes-On-Her-Pants (the plastic surgeon from the U) paid a visit to Bob yesterday. She assessed the wound site, and has started a game plan for what to do next, and has arranged for an appointment with the colorectal surgeon who was part of his main surgery team, and will be contacting the orthopedic team, as well. All the components that are entwined with what's going on with the wound and what to do next. Overall, Doc WOHP was thoroughly impressed with how much it's filled in and closed in, in the six weeks Bob's been at Bethesda. She said it looks really good, but now she needs to come up with a plan for the final stages of healing. There is some issue with the exposed bowels in the surgery site that needs to be addressed; hence the re-involvement of the colorectal team.

We have so many followup appointments in the coming weeks, it makes my head spin, but also makes me feel that things are falling into place, that Bob is that much closer to home, but that also that a plan is being mapped out, for continued progress, as we make those plans to get him home.