Holding patterns . . .

This is one of Bob's many wildflower photos . . .

Why does clarity come after the fact? After we're home, have time to ponder, rewind and replay the morning's events . . . why can't it always be with me, when we visit with doctors, sitting in the middle of an event at hand. Maybe for the same inexplicable reason I come up with great comebacks after an offense—"Why didn't I say {fill in blank} . . .??" or "Dammit! I should have said {fill in blank} . . .yeah, that would have been great . . ." I guess I just lack that gene, that chromosome or whatever it is that's responsible . . . I wish I were better at impromptu thinking, off-the-cuff responses, instead of thinking of what to do, what to say, in hindsight. . .all of this would be so much easier . . . {{{big sigh . . .}}}

We didn't get the exact answer I wanted from Bob's appointment yesterday, but it wasn't terrible news, either. Doctor S. said, based on the results of the CT scan, the tumor has not shrunk, but hasn't grown, either. See, now this is where I should have asked, "So, what is the point of all this toxic chemo, anyhow, Doctor? All the vomiting, hair loss, mouth sores, glowing drugs, cracked fingers, stomach issues, the sitting around, the lack of sleep, weight loss, for six weeks now. . . that's not counting the two months' suffering Bob's endured before the diagnosis . . . shouldn't the chemo be doing something to that tumor? Isn't a part of the reason Bob's a bit more mobile these days is because the tumor is lessing its grip?!? C'mon, give us something, anything . . ."

But no. That's when some unknown entity pushes the puree button on my brain. It spins into a big ol' churning mess of thoughts and emotions, and suddenly, I can barely focus on the list of questions in the notebook I'm holding, much less formulate a question that pertains to new information, to an answer I wasn't expecting . . . hasn't shrunk, hasn't shrunk, hasn't shrunk, whirls 'round and round my brain . . .

I felt such heaviness in my heart, another hairline fissure spreading across its surface with the doctor's words. I asked him repeat them, because I wasn't sure I heard him right. I so wanted Doctor S. to say, "I've got great news for you! The chemo is working far better than we expected, it's amazing! The tumor is half the size it was, and you're ready for surgery sooner than we thought!" Makes me wonder who or what's really in charge, how even though there's a set schedule for treatment, there's no set schedule for how the cancer will respond to the treatment. Just because I say so, doesn't mean it's going to be so . . .

Doc S. pushed the upcoming outpatient infusions into next week, Tuesday and Wednesday, as Bob still has mouth sores and other residual side effects of the most recent treatments. Doc also said because of the serious effects Bob had to the first round of chemo, and due to his previous experience with chemo as a child (some drugs have a "lifetime dose," meaning if one has been exposed to chemo before, they can't take as much second time around), they'll back off on the strength of the chemo this round, too. In my head, I'm crying, pleading, "No!! Don't back off! Please don't back off—BLAST this shit, Doc! Get it out of my husband—do whatever it takes . . ." Outwardly, I nod in agreement, look over at Bob, who is shifting uncomfortably against the exam table. Inside the whirring continues in my brain.

So, six more weeks of chemotherapy, the same routine that Bob has just gone through, then surgery, then more chemo. I'm doing mental acrobatics, trying to calculate all the dates and time frame as we talk . . . we're looking well into April as the proposed surgery time frame. Seems so far away, can't even catch a glimpse of that day on the horizon . . .

Why I thought cancer would follow our schedule, Bob's wishes, my demands, is beyond me . . . I know better than that, yet I'm not rational when it comes to this big ugly thing. C'mon! We have reservations at Wild River State Park guest house in June—work with us, please . . . Nothing is rational, nothing makes sense with any of this. Nothing fits into the confines of neat, tidy little packages, or easy-to-understand explanations. All day long, I've had to take lots of long, deep breaths to keep from crying at work. Don't know why, as it wasn't terrible, horrible, very bad news that we got . . . was just hoping for a little more, some progress, something to hold onto . . . but, this stuff began at a microscopic level, cell by cell, and is probably responding as such . . .

This morning, I was still restless, preoccupied with the unasked questions. I placed a call to the U cancer center's triage line, left a message with Doc S.'s nurse, gave her a list of all the questions that came up: what is the point of the chemotherapy? Why hasn't anything happened after six weeks? Is surgery still going to happen, even if the tumor hasn't shrunk after this next six weeks? I asked for Doc S. to call us back; the triage nurse said she'd pass the word on. I took Rocco out for a walk and Doc S. called while I was gone. Bob told me that after talking with the doctor, he felt an inexplicable sense of calm, relief. Doc S. reiterated (I do remember this now, from way back, when our connection with the U was first made) that the main goal of the chemo is really to soften the tumor—this sarcoma is a bone tumor, a hard tumor—and to keep the cancer from spreading. Given the location of Bob's tumor and all the nerves involved, softening it will assist in the surgical process. That another six weeks is the standard treatment, and surgery is still planned for after the next six weeks' treatments.

When Bob feels relief, I feel relief. When he moves around the house a little easier, eats a little more, laughs a little easier, goes outside to throw a pork tenderloin on the grill in the middle of the day, the fog dissipates a little. On my walk with my crazy Rocco, I talked with my mom, telling her the latest news, what Doctor S. had relayed. I tell her I realize it's hard to be focused and on the ball when we're the ones in the midst of the storm. That I guess clarity is difficult from our position; it comes much easier to outside sources—friends and family (hell, I'm the first one to dispense unsolicited advice to family, because I know best . . .). It also comes in the quiet moments, during holding patterns, when it seems like nothing is happening . . .

Quick little p.s.: As I was getting ready to publish this blog entry, there was a knock at the door. We thought it was FedEx, delivering another batch of heparin (to flush Bob's PICC). It was a delivery dude from a local courier, with a beautiful basket of goodies from Surdyk's! Various hunks of cheeses, gourmet honey, fancy candies and chocolates, teas, crackers . . . absolutely lovely! The doggies were as excited as we, to receive this . . .

Good days, busy days . . .

God, I can be so clueless. . . sometimes wonder how I've even gotten this far in life . . . so, we're driving into the U this morning, as we've done countless times over the past several weeks, for Bob's CT scan. We pass a billboard that I've driven by almost as countless many times, as usual, I read it aloud, ponder it for a few moments and then out sight, out of mind. It's an ad for Duluth Trading Co.'s jeans—a simple billboard depicting a pair of jeans, with the caption, "Crouch without the OUCH!" In smaller letters, "Ballroom Jeans," near the ankle of the jeans.

It's light outside, and because his pain is better managed, my driving companion can prop himself up and get a better view of the world flying by from his back seat prostrate position. I hear a burst of laughter behind me. "That's funny! Ballroom jeans . . ." Yeah, I agree. I tell him that I picture a bunch of hicks wearing those jeans to a wedding dance or something.

"Ummm, don't you get it, Jen? They mean ballroom, as in ball room. In the jeans . . . Oh, nevermind. Must be a guy thing . . ." Ohhhhhhhhhh . . . . Ballroom. Ball room . . . I've driven by that sign more times than Bob has and not once did that innuendo occur to me. See what I mean? Clueless.

Got Bob to the U and back home again in short order. The CT scan took all of just a few minutes—spent more time in the waiting room than he did in the exam room—then went up to third floor to pick up a prescription of methadone (a rigidly monitored drug; the pharmacy will not let a patient refill the prescription until they know, based on their calculations, when it's time. No refills, must get a written prescription from the doc every time), then back on the road toward home again. We'll have to wait till tomorrow, at Bob's appointment with Dr. S to find the results. My hope and prayer is that Doc S says the tumor is ready to be operated on, though in my head I know it's probably much too early. Docs had said about 12 weeks of chemo, and Bob's only half way through. But, a girl can hope and pray, right?

Thought I'd share a pic of Bob's "cankle" that he had, thanks to all the fluids pumped into

him during the last in-patient chemo treatment. Not the greatest picture, but kind of gives you an idea . . . looks like my sister, Jill's, sausage feet when she was preggers with Amelia. They did an ultrasound on the foot when Bob was in the hospital, to make sure there was no clot causing the swelling, and it subsided within a day or so of being back home. It was kind of funny— the only time, in all the years I've know him, that I've ever seen anything look fat on Bob!

Yesterday was a great day for Bob. I had the day off, and did most of my usual Monday stuff. After I walked Rocco, I came back for Gaia, and Bob went with us for a short walk, down the block and back. First time he's done that in months. He said it felt so good to get out, get some fresh air, stretch his muscles, his limbs. We ran into a neighbor out walking her two dogs; chatted a bit . . . Gaia, in her old, arthritic, bitchy manner, let the other dogs know that even though she's old and crippled, she's still Queen of the 'Hood. Eventually, we bid goodbye and were on our merry way. It was slow moving, but one of the best walks I've had in a very long time.

I also had to make a Target run yesterday, and Bob wanted to go along. We got to break in his new handicap parking permit, the big event of the day. Felt kind of like an impostor as I pulled in and hopped my able-bodied body out, but got over that quickly as I walked to the back of the car, opened the hatch to let Bob and his cane out. See, I wanted to say to whomever might be eyeballing us with suspicion, which was probably no one. We're legit! I do wonder, at times, what would happen if we were pulled over, with Bob lounging in the back. . . maybe we need to get a special permit for that, too.

We wandered the aisles of Target, picking up things off our list, and things that weren't. Gasp! Normally Bob's a purist in his Target runs—he sticks to the list—nothing more, nothing less. This time, however, Bob would spy things and just had to have them: Pringles, Tootsie Pops, Ding Dongs (they were out of Ho-Ho's, to his dismay. Or, maybe, Bob surmised, Ho-Ho's were discontinued due to the politically incorrect name. . . .what's the difference? is what I want to know . . .), a tote for his baby laptop, rawhides for the dogs . . . We leisurely strolled the aisles, lured by pretty displays, clearance signs and other goodies . . .

An hour later, we bagged up our loot and headed home. I'd made potato bacon soup earlier and we had that for dinner. Bob had two bowls of the creamy soup. As we were eating, he told me this was one of the best days he's had in a very long time. Almost felt like our life was back to normal again. . .

I was taught how to flush Bob's PICC lines, which we have to do every other day (ends up only being once, between hospital/clinic visits, so nothing major). At first, I was damn near shaking like a leaf, thinking I was going to contaminate him or fill him with air bubbles or something. Now, after doing it twice, I'm a pro. The U should hire me. Wanna see a picture of Nurse Jen doing what she does best: flushing PICC lines? Here it is!

I know Bob's anxious for the appointment with Dr. S tomorrow morning. Seems like we've been just kind of jostling along this journey, without any real direction, no signs on the horizon of any real, tangible hope in sight. People ask me what Bob's prognosis is; I have nothing to say. All depends on how the tumor responds to the chemo, what the situation looks in terms of surgery, but we won't know that until the scan results are reviewed. Until then, we really don't know much more at this point in the journey than we did weeks ago, when this all began.

If you could all take just a little moment in your day sometime today and offer up a prayer, a good thought, maybe a handful of pixie dust (even though Bob is now thoroughly annoyed with those damn pixies—they're like mosquitos around here, and making a mess of the place! Penny has to dust and vacuum every time she's up here! But, I think they're kind of cute, and a little mischievous, so keep 'em coming!), that we get some good news to grasp tomorrow, we'd be eternally grateful. Just a little one, doesn't have to be anything huge. . .

Peace, Love and Ho-Ho's!

Jen

All quiet on the western front . . .

Bob's back home, discharged this afternoon, yea!!!!!! I'm so happy to have him here with us again. I miss him so much when he's gone, end up doing a whole lot of nothing when he's in the hospital, like a big part of me, sucked right out . . . Even though our lives are oddly disrupted right now—nothing is as we once knew it and we don't know when it will be given back, at the mercy of so many unknowns—it is still so comforting, so peaceful when he's here with me and the dogs. We don't—we can't—do much of anything together because of his condition, but just being at home together is our time. We just "hang . . ." we talk, we watch the Food Network, maybe a movie, sit in the quiet of the living room, dark except for the glow of my holiday tree shining in on us from the screened deck . . .

Bob will be home with us, uninterrupted, for a day. I say "us," meaning me and the pups, who also miss him when he's gone. During Bob's absence, Gaia will walk to the front door to be let outside, where she lies on the front sidewalk, head resting on her front paws, at times sleeping, other times looking off into the distance, as if waiting for Bob's return. She'd stay outside all day, all night, till Bob came back, if I let her. Rocco doesn't seem to notice much that Bob's gone, until he returns. Then, he's all over Bob, sniffing, jumping, grabbing a toy to get a game of tug-o-war on.

Monday is the one day this week I get Bob to myself. Not sure what we'll do. Watch a movie? Take a short walk in the neighborhood? Maybe take Bob and his handicap parking permit and head out to the mall . . . hehehe. . . He's been craving fish and chips for several days now, so perhaps I'll hunt some down for dinner tomorrow night. Don't know of any English pubs (or even a Long John Silver's for that matter) nearby, which may be a problem . . . the day will pass much too quickly. . . Then it's back to the U every day for the rest of the week: Tuesday, he goes in for a CT scan, to find out how the tumor is responding to the chemo. Wednesday, he meets with Doc S., to go over the results of the CT scan, to discuss how things are progressing and what is in store for the coming weeks (we wanted to try to consolidate those appointments, to make things a tad easier, but they need time to process the scan results. Thursday and Friday brings two outpatient infusion sessions of chemo, the same drugs Bob had in the beginning.

Bob slept much of the day when we got back from the hospital. I finished my Sunday "stuff" while he napped: laundry, walking the dogs, grocery shopping, changed the decorations on the tree from Valentines to shamrocks. Bob said he feels like he can handle pretty much any food right now, and asked if I'd pick up some grilled shrimp and rice at Applebee's when I was out. He craves the oddest things lately, but I'm happy to comply. This round of chemo seemed to have the fewest and least severe side effects so far, if you don't count annoying roommates as a side effect.

I'd love nothing more than to hear the doc say, on Tuesday, that the tumor is responding better than they'd expected to the chemo, and that it looks like Bob is ready for surgery. Even though, with that, will likely come a whole host of new adventures . . .

peace, love and shamrocks, all!

Roommates! and other thoughts.

OK - I had quite a blog entry written. Tried to save it to do other things. Came back to it a while later, and she was gone. Lost forever. I will try to recreate it here, but I'm upset that I have to do this all again... oh well, here goes:
I do believe the nurses at 7D have a devious plan to give me all the roommates that others reject. Meet my current problem. He doesn't like the room location because it's too close to the nurses' station and that makes it too loud. He complains that the room is way too hot, forgetting that maybe the extra 250 pounds he's carrying might have something to do with that. It's also too light in here. Oh, and the bed is too short. Tonight I found out that he must not understand the concept of how a phone works, as he apparently thinks he must shout into the phone so that his friend in Brainerd will be able to hear him. Wonder how loud he'd go talking to someone in New York ?
Now, he has come up with the ulitmate gripe with this terrible room: "Hey, nurse... how do you expect me to use this toilet when my testicles hang into the water? For point of reference: I do not have this problem.
He would like his own room. I would like my own room. That's probably a given in the hospital. Not so sure why they ever thought double rooms were a good idea. I asked the charge nurse if there was anything I could do to expedite HIS request to get his own room. She looked up and said "Sorry."

Here are some things I'm wondering about as I'm held prisoner here...

*Why does my bed have buttons that read "arm" and "disarm" on the control panel?
*Does anyone see some kind of quirky logic in calling your French toast "Texas French toast?" I mean, aren't these bodies about as far apart on the political spectrum as possible?
*Why do the nurses put on HazMat suits when they handle the chemotherapy drug that they then dump into my body?
* Why does a nurse think that I can piss on command? After asking for a sample and simply standing there, I decided that she meant right now, and I was correct. I told her I just can't do that. She then told she would come back in 5 minutes...
*The U of M's wi-fi at the hospital would not let me access the Poweball home page because it's against their policy on gambling. Reminder to all that the State of MN runs the Powerball here. kinda funny.

Anyway, for the most part I'm feeling fantastic! At least in my little world. I still have the leg pain. I've lost a lot of hair. I get tired easily. I'm having problems regulating my intake and outtake of food (enough here!). Food is still a hit and miss proposition. Etc., Etc., Etc. Yeah, there are problems to be sure. But I just want everyone to know that I do feel like we're making some progress here. I'll keep you all posted on this progress in the coming days.
Love to everyone!
Bob

Blah, blah, blah . . .

I know this is supposed to be Bob's blog, and I am really hoping at some point, he'll take over, or at least feel up to making more frequent appearances. I'm starting to feel like the opening act for Guns 'n' Roses . . . trying to appease an audience that's on the verge of a riot, while the headliner lounges back in the dressing room, partying with groupies . . . Me (clears throat): "a-hem . . . okay, for my next number, ladies and gentlemen, I'll be performing my grandmother's favorite song, 'Green Green Grass of Home' on the organ . . ." crowd's thunderous roar: "Boooooooooooooo! AXL! AXL! AXL . . . "

Before heading up to the hospital last night, I met my good pal, Kristina, for an early dinner last night. We met at Brasa, on Grand Avenue. Good grub. I ordered the pulled pork, deep fried yucca (sounds exotic and was quite deelish, but I still think it was just fried potatoes disguised with a fancy name), and collard greens. Kristina had breaded fish, beans and rice and cornbread. We both thoroughly enjoyed our meals; portions were perfect, and price was very reasonable, too. I ordered dry rubbed chicken, with chips and guacamole to take up to Bob. It was nice to see Kristina, catch up, share a good meal. We got to Brasa early, before the dinner crowd; by the time we were saying our good-byes, the joint was hopping and people were waiting in clusters at the door for a table. We both give it two thumbs' up; give it a try, folks! There's also one in Mpls. Don't know if this is a local outfit or a chain; the website doesn't give much but all the meat is from local producers, which is cool.

I got up to Bob's room around 6:30 or so. Walked into his room and was met by his new roommate, a large man sprawled out on his hospital bed, kickin' back with legs wide open, hospital gown hiked up around his hips, displaying a traumatizing peep show all for god and everyone to take a gander. Wooooooaaaaahhhh!! Don't look, Jen . . . DO NOT look! I smiled at the ceiling and scurried past to Bob's bed by the window. I know it's hot in those rooms but wow. Is that necessary . . .??? Bob thinks his hospital records say, "Mr. Andrzejek is an easy-going fellow. Gets along well with anyone. Put the wackos with him . . ." Yesterday, there was another man sharing the room with Bob. Not sure what his diagnosis was, but everything he did was s . . .o . . . . o . . . o . . . s . . . l . . .o . . .w . . . . Took him four hours to pack up for discharge. When he left, Bob discovered all his very own toiletries in the bathroom lined up neatly, labels all facing forward. Dirty towels folded neatly in the shower. Bob's neat, but not that neat. Weird stuff up here on 7D, man.

I brought in a pretend candle for Bob to have in his room; it's very pretty—a purple glass bottle with the bottom cut out, sets in a metal base over a "votive" candle (battery-run). The "candle" even flickers like a real one. Bob loves candles but obviously can't have them in the hospital, so I thought this would be cool for his room. Gretchen had given it to me for my birthday back in November; I'd forgotten it at her house, so she brought it to the salon yesterday, along with a really cool book called The Cancer Poetry Project, a compilation of poetry written by cancer patients, edited by a woman from Minneapolis, whose husband is a cancer survivor . . . I brought that up, too, so Bob could see it, though he'll probably want to wait till he gets home to start reading it.

We had candlelight dinner; well, Bob ate while I sampled a few (read: dang near all) of the chips with guacamole, standing at his bedside table. He loved the chicken I brought up; however, even though the guacamole was not at all spicy, there must be something in avocados that irritate Bob's mouth because as much as he wants to, he just can't eat 'em. He had a caramel Rice Krispy bar for dessert, a special request treat brought in by his mom.

Bob pointed out some swelling on his right ankle (his "cankle," he called it. It's the only thing with any substance on his body at this point). He noticed it earlier, after taking a walk around 7D with his parents. Oddly enough, he realized he was actually walking on the entire surface of his right foot—heel to toe—with no pain, something he hasn't been able to do in months. When he got back to his room, after his parents left, he pulled down his sock to check his right foot out and realized it was twice the size of his left. He showed the nurse, who alerted the doc on staff. They ordered an ultra sound, to see if a blood clot was causing the swelling. I left the hospital around 8 p.m. and the ultra sound still hadn't happened. If it is a clot, it's just a matter of giving him a blood thinner to break it up. If it's not, it could just be from all the fluids that have been pumped into Bob over the past few days.

When I got home, Penny and Jim were still up. We watched a little coverage of the Olympics, then they both said their good nights and went to bed. Bob and I texted a few messages back and forth. The techs eventually came for him and did the ultrasound; no clot or anything was found. Guess it's just fluid build up that will eventually dissipate, like what had happened to his left hand the last time he was here.

Just got off the phone with Bob this morning, and good news, kids! He said he's got a good blog entry going and should have it ready to go this afternoon! Stay tuned, oh loyal fans! Have a great weekend! LOVE!

Hand shakes, White Castle and vomiting . . . (not that any of those are related)

Definition of awkward: Social worker who totally, completely, utterly disses my outstretched hand offered during our introductions yesterday. Ummmm, yeah. . .

So, yesterday, when I stopped by the hospital for my daily dose of Bob, we decided to get the hospital social worker to come up and help us make wade through the quagmire that is Social Security disability. The reality is, he hasn't worked in three months. In fact, he said he figured out that yesterday was the exact three-month date from when he stopped working. Happy anniversary. . . Right now, we have no idea how long he'll be out of work; between chemo, surgery, possibly more chemo, recovery, we don't know what's in store for him, how long this'll go on. Things are fine for us now, but as I'm quickly learning, to quote the wise, beloved John Lennon, life is what happens when you've made other plans. Thus, we're ironically trying to be proactive, find out what options are out there for us, put up the safety net before disaster hits. Maybe Bob'll never have to go on disability, but we may as well start getting things in place, since we all know how swift, efficient and rational our government is. . .

We're told it's no problem to arrange for a meeting with a social worker while in the hospital, that they're just a phone call away. Bob wanted to do it while I was there with him, so we could ask questions and take notes together. So, his very kind nurse (they're all very kind up on 7D) made the phone call for us yesterday and said the social worker would be right down to meet with us. Few minutes later, we heard a voice outside Bob's door introducing herself as the social worker.

A woman entered her room and greeted Bob. They had met once before, back during his first hospitalization (when he became so sick from the first infusions). I'd never met her before and stretched out my hand in greeting. "Hi, I'm Bob's wife, Jennifer," I said in my customary sunny manner (quit groaning. You all know that's me . . .). Then . . . (loud, dramatic organ music inserted here) the dis. There I'm standing, smile on my face, outstretched hand in the direction of Madame Social Worker, and I'm met with a big, fat handful of nothing. Yessiree, ladies and gentlemen. A complete and utter disregard for my greeting. She looked me straight in the eye and continued her own introduction.

I quickly recovered from the snub by turning my outstretched hand into a flourished fuss-with-my-hair gesture (as if that wasn't painfully obvious), and sat down. As Mdm. Social Worker and Bob started discussing the reason for her visit, I started obsessing why, why, why would this professional woman do this to me: Doesn't she like me? Is it my hair? People either love or hate redheads, y'know . . . did I look at her a funny way? Does she have a burning desire for my husband and is insanely jealous of me? Am I insane? May I just imagined it? Maybe she didn't see my hand, which was thrust right in front of her, as she looked directly at me . . . Despite the barrage of neurotic thoughts pummeling my brain, it took only a moment to process this very brief interaction before the light turned on. Ohhhhhhhhh . . . I get it now . . . she doesn't want to catch my cooties!

I quickly pulled myself together and joined in the discussion with Bob and Mdm. SW. We talked about what Bob needs to do to apply for social security disability, who we need to call, what's required on our end, how the process works. She clarified for us that social security disability is solely based on one's disability, not on one's income. Seriously, did she really just ignore my handshake? WTF? She also shared with us a number of other useful resources we can tap into, should we need them—legal services for cancer patients, other assistance programs that can provide small grants for things like groceries, gas, etc. Again, we may never need such services, but good to know they exist, and how to access them, should things get to that point. Okay, did my fingernails look unkept, grungy? Was I picking my nose when she came in? Not exactly pretty stuff to talk about, this disability stuff, but absolutely necessary. It's too easy to fall apart, to put your head in the sand and ignore this crap. God knows how many mornings I wake up and just want to pull the blankets over my head, go back to sleep for a very, very long time. Like, till all of this is over. Let someone else do this. I'm totally unqualified, totally inexperienced . . . Sorry, Jen, that ain't an option. Actually, I'm finding that the more proactive we are, the more involved I am in all of this, in digging, searching, asking questions, the less helpless I feel. Why didn't she just say that she preferred to not shake hands . . .

Overall, Mdm Social Worker was a very nice, very helpful woman, and I'm grateful it worked out to meet her while I was with Bob, but all the while, as we talk, I cannot let go of the simple act of her ignoring my handshake. Now, don't get me wrong, peeps. In this very contaminated society in which we live, with deadly viruses weaving their way through the general populations, I get it. (Though it's not the swine flu that scares me. The fact that a helluva lot of people do not wash their hands after using the bathroom does.) I absolutely understand and respect someone's desire to not shake hands. But seriously—to completely ignore someone's outstretched hand? Really. How 'bout a simple explanation? That you work with a lot of sick people and you prefer not to shake hands. Or, what about this idea: buttons for the staff at the U of MN hospital to choose to wear, something happy but to the point: "We 'heart' our patients and want to keep them healthy! Please don't be offended if I don't shake your hand!"

What made this so glaringly obvious (besides my neurotic mind) is that, in our many weeks of hospital visits, doctor's appointments, and countless other contacts with medical professionals in this journey, this is the first time that a health care professional did this to me. Every doctor has offered his or her hand in greeting, usually before I do. Every nurse, anyone else with whom we've had more than a brief encounter. The hospital is littered with canisters of hand sanitizer. Even so, I totally get this woman's wish to not shake hands, but would not be carrying on like a Sinefeld episode, if she had simply addressed the situation directly. Okay, lesson for the day, kids. Just be direct. Passivity (is that a word? If not, it is now) sucks.

Oh! Are you all here, waiting around to find out about how Bob's doing? Well, why didn't you say so?!? Honestly, not much to report with these hospital stays, which is why I go off on tangents, obsess about the absurd, report on the mundane, revel in the everyday activities going on around us, in the midst of this crazy thing called cancer. He had a little harder time with side effects yesterday; threw up a few times and had been kind of queasy all day, not able to eat much. Don't know why, maybe the second round packs a harder wallop, maybe the drug builds up in his system and the effects don't show up till round two . . . hopefully, he'll feel better today. I'm meeting a friend for an early dinner after work tonight, at a new(ish) restaurant in St. Paul called Brasa. "Latin comfort food" is what their website says. I told Bob if he's feeling up for it, I'd order something to go for him and bring it up for dinner.

After the social worker left, Bob and I took a walk around his wing. He unplugged the IV, wrapped the cords around his "Patient Pal" (the stand that holds all the IV bags; says it right on the pole, Patient Pal), and headed out. Slow going, but it always feels good to get out of bed and move. At some point during this stay, he'd like to get outside and get some fresh air, especially since it's been so nice. Our walk went by too fast and before long, I had to pack up and head to work. Penny and Jim were coming up in the afternoon, so I didn't feel quite as bad about leaving. We returned to his room, said our goodbyes and I was gone.

On my way to work, I was nearly taken out by a White Castle semi truck that came barreling down an entrance ramp onto I94. Given Bob's penchant for WC sliders, I think that would have been the utmost living (or dead) definition of irony, me being flattened by an out-of-control WC semi. Of course, had to call Bob and share that tidbit with him. When I got to work, I had to park on a side street and walk a block to the salon. As I'm tip-toeing across ice and through puddles (yea! for warm temps and melting snow!), I spy what appears to be a bag lady walking toward me. Disheveled dress, check. Rumpled hair, check. Multiple grocery bags in hand, check. Talking to herself, check. Yup. Bag lady. Please don't start talking to me, please don't start talking to me, I pray internally, as I'm already late for work and I'm the kind of person who often, unwittingly, invites such colorful characters to stop and converse. Maybe it's my own crazy, disheveled hair . . . as I get closer, I try not to make eye contact, but, I can't help it. Not only is she talking to herself, but in another language. A foreign bag lady. Interesting. Then, I realize she's got a bluetooth device in her ear. . . Really. What's wrong with me? I scurry past the woman and into the salon, where my first client is already waiting for me, and start my day.

Friday morning . . .

Got a phone call from Bob this morning. He's feeling much better, nausea-wise, and got pretty good sleep last night. A short conversation, as a doctor or someone entered his room as we were talking. He said he'd call me later, to give me an update on how he's feeling. Penny and Jim will head over to the hospital later this morning, and I'll stop by early evening, with goodies from Brasa, if he's up for it. Thanks for letting me ramble, folks. Good therapy. The desire to go back to the U, find that social worker and cough all over her has dissipated . . .

Week 2 at Club Chemo

(This pic is from this past weekend, when Bob was home between treatments, Bob and Rocco, bonding . . .)

Why do I now think it's "normal" to wake at 5 a.m.? Get up, get my coffee going, sit down at the computer and start writing . . .this ungodly hour has become a normal part of my daily routine. . . it's really quite lovely, though. I get to watch the sun slide into daytime, the sky outside my patio doors goes from black nothingness to blues, pinks, gold, charcoal trees scratched into the horizon . . . my holiday tree is glowing (oh! that reminds me—gotta change those Valentine's decos to St. Patty's. Got some green shamrock garland to drape it with, for starters. Not a whole lotta St. Patrick's Day tree decorations to be found, 'magine that), doggies are at my feet, Gaia sleeping, Rocco chomping on a bone. At this hour, I'm not as dog-tired as when I get home after a long day at work and try to sit down and plunk out a new entry. Eyes get droopy, fingers don't work, fall asleep in the recliner, kink in neck . . . I'm much more perky and witty (?) at 5 a.m. Guess I'm turning into my mom. She's the only person I know whom I could call at this hour and know I wasn't rattling her out of bed . . .

Sorry we haven't written in a while; work's been busy and we didn't have much time between the two hospital stays before we were packing Bob up and sending him back to the U for the next round of methotrexate. I keep asking Bob to contribute to the blog, as I'm sure people would rather hear from him than my endless rambling, but as much as he'd like to, I know it's very hard for him. Not just physically. The more I think about it, it's gotta be tough, mentally, emotionally, for him. To be in the midst of this thing and all the treatments and side effects, the hospital stays, the copious amounts of pain medications and their side effects, the life on hold . . .

On our drive in to the hospital yesterday a.m., Bob asked me to bring in the Scrabble board, as he can't wait to kick my ass in a game, thanks to the arsenal of new medical terms he's stockpiling. Some big hitters that'll rack up serious points. Methotrexate is one, for sure. . . we talk some, listen to the radio some, he sleeps some, while I ebb and flow with other early a.m. commuters. Occasionally he wakes, piercing the silence with, "What are you doing, trying to kill me?" when I swerve to miss a pothole or change lanes. After doing this drive as many times as we already have, I've figured out the morning traffic patterns and now have it down to a science, based on my several weeks' observations. I've figured out which lanes to be in when, to optimize my maximum speed; even in the thick of rush hour, I can get us to the U in less than 1/2 hour. But, I can't divulge my secrets, lest you are one of the early a.m. commuters and try to hone in on my route—I'd have to take you out. It's a dog-eat-dow world out there on the ol' freeway . . . man, I'd hate to have to do that every day.

We head first to the Masonic Cancer Center. Upon arrival, Bob promptly threw up everything he had for breakfast (was able to make it to the bathroom to do so). Don't know if was nerves, truly being sick from side effects, or maybe from being jostled around in the back seat (remember, he can't sit, and has to be lying on his stomach during the whole drive. 94 has turned into a pockmarked obstacle course of potholes and asphalt surges, so it's far from a smooth ride in, sitting or no . . .). Then, off to draw blood and check his levels, make sure everything was back to "normal" (I use that term relatively) before admitting him to the hospital, to start this next round. There is a rare chance that a person's levels of this, that and the other thing aren't where they should be between treatments; if that were the case, this next round of methotrexate would have to be postponed till all was ready. We hung around a bit, till the results came back: everything a-okay, and then headed back up to 7D in the hospital.

Bob got the same room he was in last week, and unfortunately, another roommate. So far, no troubles with this one. Just makes things awkward, as visitors and medical people come and go frequently with just one patient. With two in a room, it's nonstop. Very disruptive. But, Bob heard his roomie was to be discharged today, so maybe he'll be solo the rest of the week.

The routine here is the same: pump him full of fluids, administer the methotrexate (you remember this stuff, right? The neon-orange stuff? The stuff that nurses for which nurses must don hazmat suits? The stuff that, should it come in contact with Bob's undergarments, freaks them all out?), then the flushing and rescue drug. It'll be another five day stay. After he's discharged, either Sunday or Monday, he'll be back at the Masonic Center for another one-two punch of Doxil and Cysplatin. At that point, from what we're told, they'll do another scan on Bob, see how everything is responding to the chemo and decide then if it's time for surgery or more chemo.

Penny and Jim are coming up again today, probably staying a couple nights. Makes me feel so much better knowing someone is with Bob, as I've got two more full days of work before the weekend. Last night and today are probably going to be the tough days of this treatment. Not because of side effects; rather, just because Bob gets pumped so full of fluids, that he ends up being up all night, peeing the excess out. Last stay, he gained over 5 pounds, just in fluids. He's back down to his featherweight number, despite his appetite being so much better these past few weeks. Though that's all relative, too . . .

Anyhow, I need to get moving here; wanna walk the dogs, straighten up the house a bit, etc., and stop by the hospital before work, so will probably update this in a day or so . . . LOVE to all!

Jen & Bob

Tres Robertos! Bob Cubed! Bob, Rob, Robert . . .

Saturday, Feb. 13, 2010

First of all, a HUGE "ROCK ON" to those of you who have submitted entries in the Caption Contest so far! FUNNY sh*t, peeps!!! I KNEW you had it in you! Wow . . . what you all have come up with blows my crummy little idea out of the water, so much so that I'm ashamed to share it. (Okay, I will: It was, "Here's to you, U Brew!" Thank you very little . . .) Keep 'em comin', as we all know that laughter is the best medicine, but we don't know yet what the winner will receive! Until we do, why not take a chance, huh?!?

This picture was taken on my morning walk with Rocco today, before I went to the U to see Bob. Thick frost on the trees, sky heavy with fog, sun piercing through the dense veil . . . a true winter wonderland. Breathtaking. At first, I cursed the electrical wires in this photo, then I felt they added a cool element to the grey, black, white of the image. Bob would be proud.

Bob had a few visitors at Club Chemo today—people whose titles don't end in "-ologist" or "Jen" for a refreshing change. Bob P. and Bob D., colleagues of Bob's in the wine biz. I so wish I had been there—I know I would not have shut up for a minute about three Bob's (hmmm . . . apostrophe or no?) in the room: "Three Bob(')s walk into a hospital . . ." for starters. Okay, maybe it was better I wasn't there. . .

I stayed home this morning because I already knew that at least one of the Bob's had told Bob he was going to stop by for a visit. I wanted Bob to have some time alone with his friends, to catch up, do whatever it is that guys do when chicks aren't around. (Okay, all these Bobs are seriously confusing the hell out of me . . .y'all with me so far?) I got a lot of stuff done around the house: loads of laundry, walked the dogs, cleaned (with Penny and Jim's help before they took off—a humongous THANKS!!! You two are sofa king fabulous!!! Sorry, had to say it . . . please don't demote me from Favorite Daughter-in-Law status for the potty mouth!), worked out, cleaned out the fridge, returned phone calls, e-mails, wrote some thank-you's . . . I finally headed out mid-afternoon back to the U. I arrived as one of the Bobs (not mine!) was leaving. Was so nice to see him, nice to see someone connected to Bob's real life here in the city, someone who has a history with him, who knows him on a personal, rather than medical, level.

When I entered Bob's room, his room was darkened. He was lying in his bed, eyes closed. I leaned in to kiss him, he opened his eyes. He apologized for dozing off, told me he had a great afternoon, first with his parents, then with the other two Bobs. I told him to go back to sleep; I could read a magazine or entertain myself with my uber-cool iPhone while he slept. He dozed for a short while, but his IV kept beeping; air bubbles, empty bag, time for a new drug, another transfusion. Eventually, the interruptions ceased and I let him sleep, read a magazine, fiddled on my phone. Maybe a half hour later, he woke again, seemingly refreshed and alert. He told me he hadn't eaten anything since breakfast. He hadn't had much of an appetite since then, but was starting to feeling hungry. Hospital food's finally wearing him down. Bob's nurse brought in a three-ring binder full of local restaurant menus, so we dug through them, and finally decided on the Village Wok, a U of M legend for Chinese cuisine. After calling in the order, I trotted off to pick it up which was a whole three minutes away from the hospital. I think just getting out of the hospital took longer than getting to and from the restaurant.

I wish I could leave a glowing review of the Village Wok, but the legend of the Wok is just that. A legend. So-so food, not bad, but not good. Veggie fried rice was bland, uninspiring. Bobs spicy garlic chicken, same. Very saucy, but not in a good way. My spring rolls were okay, but nothing was worth writing home about. We picked at our food, talked a bit more until Bob finally pushed his food away and lay down. I know the signs: eyes close, breathing becomes heavy, slower, voice slurred. Time for me to go. He opened his eyes long enough to say goodbye, kiss me a few times, then lay his head back on the pillow and was soundly sleeping.

I made this little sketch of Bob on an app on my iPhone called Sketchbook Express. I call it, "Bob Sleeping." Sketchbook X is fun little app where you use your finger and chose a number of "tools" to create works of art. My husband sleeping is a work of art.

Valentine's Day, 2010

Bob was discharged from the U tonight. Just in time, as a new patient was being rolled into the room while Bob's nurse was going over his discharge orders. I was taught how to flush his PICC line, to be done daily to keep it clear, as they'll be using it in the coming days when he returns for the next round.

A very nice Valentine's Day for us—home together, a bottle of montepulciano (for me), green bean Tater-Tot hot dish (for Bob, mouth sores are back), Neil Young softly crooning on the radio, dogs hanging out in the background, light snow falling softly outside. Happy VD, everyone!

Caption Contest!

First things first: I just got off the phone with Bob and he told me there's a slight chance that he may be discharged tomorrow. (Yea!!! I'm crossing my fingers and toes and anything else that I can manage to cross!) His preliminary blood work looks really good, but he's getting a blood transfusion today, as the chemo interferes with bone marrow production, which is where hemoglobin (oxygen component of blood) is produced. The infusion will increase his hemoglobin, while his marrow production gets rolling again. They'll do more tests tomorrow and know how everything looks for sure, and of course, they won't let him go home until everything is right as it should be again. But I just wanted to get the word out, in case anyone is thinking to stop by for a visit. Text or call Bob before you do, so you don't arrive to an empty room!

On to the next exciting item! We've decided we'd like a little more interaction with our viewing audience (because there's only so much sitting around in a hospital room one can do before one starts doing things like taking pictures of the patient in compromising situations . . .). As such, we're going to have a Caption Contest! I've posted a picture of Bob below, and we're looking for a great caption that best fits the scenario. The picture is just too awesome to keep to ourselves and is begging for a title, a slogan, something that best captures the spirit of what Bob is expressing here. (I already came up with a few, but will refrain, in the spirit of fairness, and because you all are already subjected to enough of my crap!) We're not sure yet what the prizes for the winners are (maybe some hospital souvenirs, maybe a date with Bob, maybe a great big bucket of nothing!!!), so don't try too hard! Bob could use a few laughs, so have fun and make him proud!

Good luck to everyone! Put your thinking caps on, and may the best caption win!

Friday night, every thing's alright!

*Note: the quilt that Bob is snuggling under in this photo was a very kind and generous gift from the Freemason volunteers at the hospital. . . (I keep calling them the Freebasers. I know, sick and wrong, about a group that does such good work. It was just that when the adorable silver-haired lady came into Bob's room and offered a quilt to him, I had to ask her again what organization she was with, because I truly heard "freebasers" when she introduced herself. . . )

Tonight is Friday. Bob and I thought we'd do a joint blog entry, of a stream-of-conscious kind of experiment. I type as he shares thoughts, songs, comments . . . I'm typing away on his baby HP laptop, he's eating his dinner, and basking in the glory that comes with not havin a rommate. Poor guy, that Fuzzy. Dude's a mess and didn't even care. Guess he had a stone in his pancreas that was 12 milimeters in diameter, but the opening it needed to pass through was only 4 mm. Also had emphysema, COPD, not sure if he had cancer or not. My guess is yes, being he was on the oncology floor. But, Fuzzy didn't care about any of that. Just wanted to get the hell out of the hospital, head down to the local watering hole back in Chippewa Falls where his friends were, and not ever come back. (So much for patient confidentiality in these rooms, huh?) Fuzzy was released this afternoon and is probably face-down under his barstool by now. I get by with a little help from my friends . . . however it works, I guess . . .

Bob's dinner has just been delivered, beef barley soup, buttered noodles, grapes. And a Dr. Pepper. "Let's see . . . what kind of wine would go well with salty beef barley soup and buttered noodles?" he wonders aloud. After a moment, he decides that beer would be better, maybe a dark brown lager, a doppelbock, a soft, carmel-y beer. That would be for the soup, he tells me. For the noodles, he says, a soft viognier would pair nicely. I'm sure Surdyk's can't wait to have him back to work.

Friday night and I need a fight

My motorcycle and a switchblade knife

Handful of grease and my hair feels right

what i need to make me tight are those

girls, girls, girls. . .

Bob sings a classic Motley Crue tune as he eats (sorry, don't know how to make the little umlaut-y thing over the "o" and the "u" with Bob's little baby laptop). He stops for a moment at the line, and my hair feels right, runs a hand through his very thin hair and says, "Well mine doesn't," and continues the song. His nurse comes in and asks how things are going. "C'mon in—we're havin' a party!" he tells her. She laughs as she looks at his dinner tray. "Grapes and noodles, huh? Some party animal you are, Bob!" She announces that she's done with her 12 hour shift but will be back at 7 a.m tomorow. Her replacement nurse for the rest of the night is the cute li'l rocker chick who was Bob's nurse a few weeks ago. I know she'd rock out to the Crue with Bob. Bob and his nurse exchange a few more smart-ass comments with each other before saying goodnight. I just have to mention, once again, what phenomenal care Bob has received here at the U. The staff in the oncology department, the people at the Masonic Center, everyone up here on 7-D are sofa king awesome at what they do, and have done so much so far to make Bob comfortable and feel confident that they have his (and all the patients') best interest at heart. It kinda makes me sad that Fuzzy couldn't see that.

Dr. S has been the doctor on staff on 7D this week. When he made his rounds this morning, he told Bob they were looking at Monday as his discharge day. Bob pleaded to make it Sunday, so he'd have a little more time at home before turning right around back again next Wednesday. All depended on the numbers, Doc S said, if the toxins were flushed from Bob's body.

We talk about Bob having visitors over the weekend. He's hesitant to have anyone up, for fear he just won't be up for it, but also has felt better today than he has in a long time. He said he only took a short nap or two the entire time his parents were here, from 10-ish to around 5. He feels rested, in good spirits and hopes the good waves continue on into the weekend. If it does, he'll be up for visitors, he thinks. I tell him I think it'll do him a world of good, see some friends, have some contact with the world outside hospitals, doctors, his parents and me. "But just doing this makes me happy," he says. "I like just spending time with you, like we are now. I'm having fun tonight with you here." I'm touched, but troubled. The man need some serious outside contact before this whole experience turns him into a Howard Hughes-esque recluse.

As Bob continues to eat and talk, his voice gets quiet, a little shaky. I look up from the laptop as he removes his glasses, wipes his eyes. "I hope at some point, something good comes of all of this," he says quietly. I realize he's crying. I set the laptop down and go over to him. He hugs me tightly, tells me my hair smells so good. I tell him I wish we could just lie down in his bed, take a short nap together, but I know it's just not possible. Not with all the lines running from his arm, not with his bad leg. I'll have to take this, this tight, standing hug. We stand like that, in front of his window that looks out onto the Mississippi, for what seems like a long time. He finally takes a deep breath and says, "Okay, I'm done. I just need to have those moments, just get 'em out of my system now and then. Then I feel better." Simple as it seems, I know he means it.

I stay a while longer, typing away. Bob finishes most of his dinner, gets a shower in, clean bedding on his bed and finally lies down to rest. We talk a bit more. He's getting more and more sleepy, and eventually, he falls asleep. I realize it's quarter to eight and valet parking is over at eight. I'll have to finish the blog at home. I stand up and start gathering my things. Bob pulls himself out of his little nap long enough to give me another hug and several kisses goodbye. I'm glad Penny and Jim are staying with us another night, because I hate going back to the house without him. Even the dogs know there's someone missing.

Greetings from Club Chemo!

Greetings from Club Chemo—having a ball . . . wish you were here! Hang ten, dudes!

Love, Bob!

Bob has been at the U since Wednesday; I brought him in at 7:30 a.m. that morning and went back home, to feed and walk the dogs, get ready for work. Not much I can do at this point, so he told me to go home, come back later . . . To give you an example of how far he's come since all this began, when I dropped him off at the Masonic Cancer Center, he walked himself into the clinic, where they took blood, then walked himself over to the hospital (with a nurse escort, of course). Even just three weeks ago, he would not have been able to do that. I credit at least part of that with getting on better pain management drugs; maybe the chemo is also already shrinking the tumor, too, but we won't know that for sure for another few weeks.

Bob had a PICC line inserted on Wednesday morning (PICC stands for peripherally inserted central catheter. I like to learn the names of all the acronyms, the drugs, the procedures. Not sure why, as the more I learn the scarier this all becomes . . . ). The PICC line is an IV line that can be used for prolonged periods of time. Not only can drugs and fluids be administered through it, but blood can also be drawn from it. From what I hear, nurses love 'em because the PICCs make their jobs easier. They may leave it in Bob for a while, since he'll be back for this same chemo treatment next week, and then two days later have another round of Doxil and Cisplatin, and the PICC can be used for that, too.

Before starting the methotrexate (let me remind you, because I've thought about this every minute of every day since we were told this: this is the drug that is given in lethal doses, which requires a rescue drug to counteract the effect; it's the drug that, other than death, is tolerated quite well. Yup. That's what they tell us. With a straight face.), Bob was started on a regimen of fluids through the IV Wednesday morning, into the evening hours. Methotrexate, among other things (e.g. death, did I mention that side effect?), can be toxic to the kidneys and liver, so the gist of the treatment is to flood the body with fluids, to get the pH to an acceptable level before administering the drug. This was done over the course of several hours. The drug wasn't given to Bob until later Wednesday evening, around 8 p.m. He got an IV dose over the course of around 4-5 hours, after which they administered the "rescue drug" (ummm, yeah. Rescue drug.) and lots more fluids, to flush the drug out of Bob's system. Oh, I forgot to mention that the drug is glowing yellow-orange, and that nurses who administered the drug came arrived in hazmat suits, and that they told Bob to throw away his underwear, should he dribble any urine on them . . . the underlying message here is, we're putting this stuff inside of you, but should it get outside of you, FOR THE LOVE OF GOD, DON'T TOUCH IT!!!! but don't worry, most people tolerate this poison very well . . .

The average stay for this treatment is about five days; some people stay longer, just depends on how each body is able to flush the drug out of the system. Bob's oncologist told him that the quickest stay was a patient who was out of the hospital in three days, but to not count on that. My husband is not average. He never does anything like "everyone else," sometimes to my chagrin. So, I'm cautiously optimistic with the "five days" thing. I told Bob he'd either beat that patient's record of three days by being out in two, or he'll end up with complications that force him to stay two weeks. No middle ground for Bob, no siree. . .

So I got a text from Bob Wednesday night while at work: New roommate! Old f*cker who's hard of hearing . . . think I'll snip his IV . . . nickname's Fuzzy. God I hate roommates . . . I couldn't imagine how someone named Fuzzy could instill such a visceral response—he sounds like someone's cuddly grandpa—until I called Bob later, on my drive home. He told me Fuzzy is a crotchety old guy who's ready to break out of the hospital as soon as he gets his chance. Drops the f-bomb like nobody's business, told the docs he slams 5-6 beers a day and don't start in on him and his smoking, because nobody's gonna tell him he's gotta quit! Godddam nobody! Then Fuzzy'll get on his cell phone and subject Bob to his one-sided hard-of-hearing conversations: This is the worst effing hospital I've ever been in! They tell me I'm supposed to stay till Friday, but I don't care what they say! I'm effing leaving tomorrow . . . you better have an effing beer and smoke waitin' for me when I get out, goddamit! Fun times at Club Chemo!

I was going to stop by after work on Wednesday, but they had just started the methotrexate, which meant lots of action going on in Bob's room. He told me to just go home and come back after work the following day. Very quiet and lonely at home without him there. Just fed the dogs and went straight to bed.

Penny and Jim came up yesterday morning and were with Bob all afternoon, which made me feel better about not being able to see Bob till after work, which would be nearly a day and a half since I last had been with him . . .they came bearing gifts of Rice Krispy bars and chocolate chip bars, a U of M sweatshirt and a new fleece pullover (because Penny was horrified by the one Bob wears around the house—one pock-marked with burn holes from the piles of buckthorn he torches in the backyard. I guess it's nice to know Polartec is flame retardant. You should see the stocking cap he wears while playing pyrotechnics. Looks like Swiss cheese. It's amazing he hasn't gone up in flames yet . . .)

I stopped up to see Bob last night after work. He told me he has a little bit of nausea from the chemo, but not bad. Has been able to tolerate small amounts of food, spread throughout the day. He had fruit salad, ice cream, yogurt . . . He gets very sleepy very quickly, so doesn't think he'll be up for visitors, at least not yet. The night before, after all the fluids pumped into his body, he was up every ten minutes, he said, peeing like a racehorse every time. Over and over, as such, he didn't get any sleep. Pretty sure he's now making up for that. He doesn't want to be rude, dropping off to sleep in the middle of a conversation, as he did last night when I was there; kept apologizing for nodding off. I thought he looked especially tired, then I realized he's lost most of his eyelashes. Makes his eyes look very sleepy, without their dark fringe. I was at the hospital about an hour until his voice got sluggish and his eyes closed. We said our goodbyes and I left him to sleep. I stole a quick glance at Fuzzy in the bed next to Bob, but he was also sleeping . . .

When I got home, Bob called to make sure I made it home okay. He told me he thought the mouth sores were already returning, because he felt something on his tongue. He showed the nurse, and she agreed, looked like a mouth sore to her. He couldn't leave it alone, was fiddling and picking at it, and before he knew it, he had picked the sore right off his tongue! And it didn't hurt anymore! A miracle! He called the nurse over and stuck out his tongue so she could have a look. After examining his tongue, she paused a moment and said, "You had fruit salad for dinner tonight, right? Ummm . . I think that was a piece of pineapple stuck to your tongue."

Random musings from a madman . . .

Hey gang! Thought I'd make a quick appearance before I'm shuffled off to a secret wing of the hospital for 5 (or so) days... I don't know if I will write from the hospital, but I'm sure Jen will keep everyone up to date. By the way, I haven't yet decided if I will be taking visitors in the hospital. The first factor would be how I feel, and the second is if I have room to myself or will be sharing. Check the blog and we will let all know...
After my last visit to the docs on Thursday, some of my meds changed again: we're still tinkering with the pain issue. To be honest, I end up taking more than the doc thought I'd need, but most of the doctors tell me it's stupid to have the medicine and try to 'tough it out...' They always say "...take the damn medicine, and don't try to be a hero..." Don't get me wrong, I'm still way better off in the pain department than I was previously.
I'm able to eat almost anything I want, but often I get a little surprise when my tongue or the roof of my mouth tells me that whatever I'm eating just ain't gonna happen tonight. I am starting to really crave my favorite foods again, so that's good. I'm sure I will eat some of the food at the hospital, but I already know that Jen and my mom and dad will be "smuggling" in some meals for me. Actually, they said I do not have a restricted diet, so I can bring anything in that I want!
Regarding food - I have learned that vanilla ice cream with a bit of Hershey's chocolate syrup and a few (5-6) tablespoons of the leftover morning coffee all swished up is a great treat! I like it nice and runny - just like a cold soup!
Right now, Jen is preparing my "last meal" as I have dubbed it; creamy, bacon/potato chowder! She doubled (or tripled?) the bacon component after I encouraged her from the sidelines. "Eek - a black hair!" she just screamed! We've gotten used to picking MY hair off of our plates instead of the dogs' hair.
I still have some hair, although it's getting pretty thin and wispy. I ordered some baseball type golf hats a few days ago, but Jen picked up some 'beanie' type things yesterday. Not sure if I'll wear any of them, but they'll be ready should I go that route. I'd like to keep some hair, as I have some rather icky sores all over my scalp.
As far as Jen is concerned, the best thing that happened in the past few days is that I got a handicapped parking permit! SHE is dreaming up ways to use it on shopping binges all over the Twin Cities! I keep reminding her that I have to be along to make it valid: it doesn't work to just put it in any car out there! It is rather nice to have that. Now, I just have to worry about getting to these prized spots before some old person or some pregnant woman... in other words, it's "game on." Oh, yeah, I can 't drive. I still have to count on Jen to be rather aggressive when we see these spots!
I really wish I knew more about the next 5 days in the hospital. According to doctor, I will basically be lounging around looking for something to do, as the side effects are rather benign for this treatment. (I know - it sounds odd that they have to keep me, and then tell me I will be bored and it will be rather uneventful!?!) Part of me is a bit scared and the other part is dreading the boredom aspect of the whole thing. Well, we'll find out bright and early tomorrow! I will miss hanging out at home with Jen and will miss the dogs, too. Our house is very relaxing and beautiful in the winter - we have lots of windows which give us fantastic views of the trees and the wildlife. It's also very quiet, as we live on a dead-end street. There's nowhere else I would rather be as I recuperate. I've said it before - you can't rest in a hospital.
The docs have a schedule for me for the rest of February, but beyond that, I - nor they, at this point - know what direction we will take. I'm sure after Feb. I will have some tests to see if I need more chemo or if I can finally have surgery. YES, I am looking forward to surgery. Maybe, just maybe, it will end some of my leg issues. At least that's my hope. I've told some people that I will feel cured when they say 'everything looks good.. you're on your own now..." plus when I can partake in a round of golf, and when I can carry my camera bag out into the woods. My major concern is, of course, my life, but assuming that I'll pull through it all ok, I'm praying that I have no permanent leg/nerve damage that leaves me in the state that I'm in now. I am looking forward to working again! To going shopping. To taking the dogs on walk. To driving a car. To having a glass of wine or a nice glass of microbrew. First on my list of bigger things is a trip to Memphis to hit Graceland, but more importantly, to eat BBQ all weekend long! Anyone want to join me? Beyond that I have a lot of dreams that I want to start working on, but I'll keep those to myself at this point.
I want to once again thank all of you for the prayers, thoughts, e-mails, texts, cards, etc. It means so much to me!
My sister and I talk almost every day now: previously we talked maybe once amonth? Good can come out of bad situations! I wish she lived 'in town' here, as I would love to hang out with her. Can you move back? I know Grandpa and Grandma will help out if you decide to come back...
I also want to thank my parents who drop everything to make their way up here when I call them. Their help in getting me to appointments and bringing food has been invaluable. And just hanging out with my parents has never meant so much to me.
Mostly, however, is my thanks to Jen. Without her, this 'ordeal' would be much more difficult than it's been. She's not only my wife, she's my bestest friend in the whole world. I don't know where I would be without her.
I feel bad, as I know sometimes this is all harder on the family than it is on the person going through it.
Well, there you have it: random musings from a madman. Best wishes to you and your families for great health! We'll talk to you soon!
Bob

Sunday, Sunday . . . random thoughts . . .

I feel like I'm living in a Stephen King novel. Every time I go to the bathroom, I find a neat little pile of black hair, sitting on the sink, or maybe in the shower. As though someone's trying to tell me something. Will my dogs be next? Will I be next? I'm afraid to look turn around . . . "Heeeeerrrrrre's Bobby!" (A gratuitous nod to my favorite scary movie of all time, The Shining. Can anyone say, "Overactive imagination"? Or how 'bout, "Too much time on our hands"?)

For as much hair as Bob's shed (shod, shud?) already, you'd think he'd be bald as Kojak (with a fentanyl pop instead of a Tootsie Pop). But, no one would look twice at him at this point. I can tell his hair looks thinner, but it just looks like he's had a smart new haircut. Seriously, y'all wouldn't notice a thing. His brows are thinning too, just noticed that today. No more Grandpa Andrzejek brows. No more vibrissce to help him feel his way through the house in the dark. All in all, he's feeling okay these days. Has had a pretty good appetite, walking around much more than he had pre-chemo, and is in good spirits. Wish I could share all the one-liners he comes up with while we're hanging out here. He's full of 'em! Or, full of it . . .

These past few weeks have been probably the best weeks for Bob, since all this began. Barring his stint in the hospital when he started chemo, he's more mobile than ever, though he still can't sit, not comfortably, anyhow. He does get fatigued when he's on his feet for a while (half-hour or so), but if he anticipates that, and tries to rest before the pain and fatigue catch up to him, he's able to be pretty active around here (right now, he's emptying the dishwasher!). The mouth sores are dissipating to the point where he can eat just about anything, though he gets a few surprises now and then (such as chocolate candy. Guess that just means there's more for me . . .). We had Cajun-style beans and rice with sausage for dinner last night and he ate a nice big bowl of that. Tonight, we're doing pork chops on the grill, at his request. When he goes in for the stint at Club Chemo in a few days, we can bring him whatever he wants to eat, and since there's a wonderful selection of restaurants around the U, he will hopefully be eating well during this next round.

We just got his temporary handicap parking permit in the mail yesterday! (THANKS for the application and suggestion, Dan M.!) That never occurred to us, to apply for one, but Bob definitely qualifies for it, based on his condition. I can't believe how ridiculously easy it was to obtain the permit—fill out an application, check a few boxes, mail off the app with five bucks and a week later, ta-da. We did have to have a doctor's signature, but do they really verify that? Not that I'm suggesting anyone go out and procure one of their own, because from what I hear, there are plenty of people out there abusing the privilege, but I just found the process amazingly easy (and cheap), considering anything else relating to the government. Bob teases me about taking the permit for my own personal use, "borrowing" Bob's cane and permit and heading to Rosedale . . . but in all reality, is not a funny thing. I always think about a bumper sticker I saw years ago, "I'd gladly give up my parking permit for your legs . . ." I'm sure Bob would agree.

Normally, on a day like today, with Super Bowl Sunday here (neither of us care one iota bout it, whether or not the Vikes are playing. I am going to watch the Puppy Bowl on Animal Planet, however!), and with the beautiful, mild wintery weather, Bob and I would head to William O'Brien or maybe Afton State Park, for an afternoon hike with the dogs. After hiking for a few hours, we'd stop somewhere, maybe the Brookside Tavern in Marine on St. Croix, for some onion rings and a beer, before heading home to make dinner . . . one of my favorite kind of days with him . . . but now, I do like our quite days together during this time, as well. A different kind of togetherness, but together just the same.

Just a few more days of our quiet home-body-ness, and then Bob'll be shipped off to the U. Even though this next stint requires a hospital stay because they'll damn near kill him with the dose of methotrexate, we're told most people tolerate this really well. I still can't figure that one out, and will definitely make sure I know where the "off" button on the IV is, just in case. Doc S. says the average stay for this type of chemotherapy is about five days but he's seen patients stay ten days, had one that made it through in three, though evidently that is not the norm. Like everything so far, there are no absolutes, no definite plans, no cut and dried answers, and like everything so far, we just roll with it. It's all we do, and we do it well.