Valentines Trees and Mouth Sores . . .

Nothing too exciting to report these days, which is not always a bad thing; hence, the photo of our Valentine's Tree. I think I mentioned it in an earlier blog, that we've decided to keep the tree up and decorate it as the holidays come and go. We both love the soft glow it casts through the living room, whether it's at 5 in the morning or 11:30 at night. I'll take it down when this is all behind us, but right now, it's comforting, peaceful, to sit in its light. It's out on the screened deck, so I can see it from many corners of the house—when I'm at the sink in the living room, by the patio door in the bedroom . . . Already started on my St Patty's decoration collection. That Dollar Tree is the best invention. Ever.

It's still a good week out till Bob's next date with Chemo, but as it's been a few days since either of us has made an appearance here, he asked if I'd post an entry, to appease his adoring fans, as he was not up to it. Just tired, is all. So here I sit, doing what I do best—multitasking. Got the laptop on my lap, The Hangover playing on the ol telly-vision, and a book of Sudoku (shout-out to Tia for that idea! LOVE that game, even though by that admission, I've officially, publicly, turned into an old lady) tucked between my leg and the arm of the recliner (for when I lose writing inspiration and need a dose of linear mind exercises—to break up the jam and get the creative juices going again), and Rocco shoving toys at me, trying to engage me in a rousing game of tug-o-war. According to a study by some brainiacs at Stanford University, however, multitasking individuals actually accomplish less than their single-focused counterparts . . . pfffft!! I say! What do they know? They should come hang out with me for an afternoon, see just how much I accomplish in my life, given my astounding multi-tasking abilities . . . mmmm . . . . on second thought, nevermind. Anyhow, I digress . . .

The past week has been lots of waiting around punctuated by bouts of nothing much going on. After the first round of chemo, Bob was told to hold tight for three weeks till round two, which will be in about a week. Barring that 5 day stint in the hospital at the beginning of chemo, due to severe side effects, Bob has been doing pretty well this week, all things considered. He's been up and at 'em more than I've seen him up and at 'em in a very long time. He's been able to walk around the house, doing a little cooking and cleaning as he feels up to it; he even went outside and pushed some snow around on the driveway the other day (one more example of how different we are, just in case no one has picked up on that yet. My snow removal method of choice would be to drive over it till it was all packed down. Bob'd be out there as soon as the snow started falling, maintaining a constant vigil to keep the driveway free and clear. Man vs. snowflake).

He has a followup appointment with his oncologist at the U this coming Thursday; don't remember what that one is about for sure—probably to see how things are going with this first round, and to prep him for the next. He has had issues with mouth sores; started out more of an irritant than anything but they've now has morphed into a real pain in the ass. Or mouth, as it is. Eating oatmeal this morning, of all things mild and mushy, just wasn't happening. I called the on-call oncologist (say that out loud three times) and explained his situation. She asked when Bob had had chemo and if it was his first round. About two weeks ago, was my first answer, and yes, was the second. She said that he's about on schedule, that mouth sores tend to get ugly around week two, and that the first round is usually the toughest. She suggested several things to keep it tolerable—rinse more frequently with the Magic Mouthwash especially before eating, to also rinse with a solution of salt, baking soda and water, and above all, keep hydrated, even if he can't eat much. . .

It's so hard for him, because right now, he does have an appetite—the stomach is willing but the mouth is weak . . . he really wants to eat, because so many things look good to him, but very little is able to pass thorough his mouth without causing serious discomfort. He showed me his mouth today (at the request of the doctor, not because I asked . . . he'd still like to post photos sometime. I think the ones on his lower lip look like the chain of Hawaiian islands . . . ) He can still tolerate ice cream, yogurt, grapes, canned peaches, Ensure, soft cheese—like his new fav, Colby! This, coming from a man who tries to tell me cheese that smells like a dirty jock strap is a good thing . . .

Again, I'm helpless in this situation as I try my darnedest to come up with soft, tasty things that are easy on the mouth. We're continually surprised at the limited number of things he can eat. Even mashed potatoes have been tough, as are cooked veggies (especially cooked onions and avocados—something in those soft really irritate his mouth) and certain fruits. Try little bits of this and that. I've given up on making big meals right now, as much just goes to waste.

Once again, it's late and the lids are drooping . . . maybe one of us will check in tomorrow, since we've been kind of slacking. Sweet dreams, all!

LOVE!

A Day in the Life. . .

Jen keeps saying "Write a blog entry . . . people want to hear from you . . ." I know she's right—she usually is—but I always have a hard time starting to write, as I really have so much to say, I don't know where to begin. So, how about 'A Day in the Life of Bob'??? Good times up here on Walton's Mountain . . .

I try to go to 'bed' at 10 p.m. every night, at least that's my target. By 'bed' I mean it may be our bed or the futon; however, lately I have started on our bed. (Jen slept with me a night or two, but I feel so bad that I'm up every hour or two, that I'd rather she sleep away from me, so she can get an uninterrupted night of sleep. She's got to go to work; I've got all day to sleep.) My alarm on my Blackberry is set to go off every two hours, day and night. This is a reminder to take my pain meds. The pain has never totally subsided, but I try to keep it at a manageable level. I've found that one pill every two hours keeps me mostly pain free, so I want to stay on top of it, thus, the alarm (it is a nice little Zen-like chime that gently reminds me to take my pills).

My night is spent sleeping in one hour blocks. I rarely get more than one hour at a time, but I think it's a deeper sleep than what I had been getting . . . especially when I wake up disoriented but deeply rested, with a big puddle of drool on my pillow. Jen tells me that I'm even snoring again, too, but I know that's not true. I think she wakes herself up with her own snoring. Anyhow, this is my evening routine, until I'm ready to shift to the basement futon around 4 a.m. I kind of hang out downstairs, watch the news, doze on and off a little more, and prepare for the 'candy buffet' (6 a.m. pill fest) that will occur soon enough. Rocco is usually the first to visit me in the basement, waking me with a nudge from his cold nose on my cheek. I may get a surprise appearance from Gaia, too. She's getting old and her legs don't work quite as well as they used to. She has a hard time using the stairs, so I feel honored when she makes the effort to come down and nap with me. When 6 a.m. arrives, I usually feel pretty calm and rested. Around this time I grab a new daily pill sheet and head upstairs to take my next round of meds. Call me "anal retentive" (go ahead, Jen does), but I track every pill that goes into my body and the time it went into my body. The morning batch is my biggest of the day: I take seven different pills. Most are prescription, a few are not. I usually return to the futon and relax a bit until Jen joins us with her cup of coffee.

These early morning hours are my favorite time. Me, Jen and the dogs. Sometimes when Jen joins me, she brings chocolate or some other treat that she acquired from a client, neighbor, family, friend. Sometimes I can eat what she brings me, sometimes it just doesn't sound appealing at all, other times I want to eat it, but when I try, whatever it is may hurt my mouth or just not have any taste at all to me. We talk, share our days (I'm usually more alert and talkative at this time than at night, when she gets home from work), watching the news . . . she might write, I'll sleep a bit, or we are entertained by watching the dogs as they try to take each other's bone away or terrorize each other in some other way. I will normally doze of a bit at some point, and when I wake up, often, find that Jen has quietly left to go walk the dogs.

We may eat breakfast together, or may not. I've found breakfast to be the easiest meal; I can eat eggs, cheese, yogurt, many fruits (berries, grapes, clementines), oatmeal. Good stuff that fills me up. The rest of the morning for me means lounging, answering e-mails, maybe do some dishes or laundry; basic, normal house chores, as I can. I try to stay out of Jen's way because she's often getting ready for work at this time, feeding the dogs, trying to get out the door to work in her not-so-timely fashion. . .

Once Jen leaves, the dogs begin their afternoon of mayhem—growling at each other (well, Gaia does the growling, "Get out of my face, li'l mutt!" while Rocco does the high-pitched whining, "C'mon! Please play with me! I love you, Gaia!"), stealing each other's bones, wanting to go out every fifteen minutes and then coming back in right away, barking at the turkeys and anything else that moves outside (Rocco), and begging for treats for the whole time (Gaia). They're not used to having someone home all day, and I think they too have lost a lot of sleep over the past few weeks.

When Jen leaves, the house seems so un-alive, despite the dogs' antics. She brings so much energy to me and the dogs. I miss her before she even gets out of our driveway, as I know I won't see her until 8:30 pm. or so . . . As I've been feeling better each day, I try to do something new—yesterday, I got outside for a few minutes. Felt so good to feel the fresh air in my lungs, the cold on my skin. Got to see neighbors down the street who were out walking their dog, and chatted with them for a few minutes. Eventually, I'll have a snack, then maybe lunch. Lunch and dinner are always a challenge. The food thing can be really frustrating, and often makes no rhyme or reason. Jen bought a couple avocados the other day, and I thought for sure I'd be able to eat those, as they're mild, cool, soft, should be easy on the mouth. Sounded so good! But, no such luck. For some reason, my mouth really hurt when I tried to eat a few slices. Same with good ol' fashioned creamy mild cheddar mac 'n' cheese. Ouch. BUT a stinky (as in ripe, underarm odor), acidic cheese from Spain (can't remember the name—Ugeli, something like that)? YUM! Go figure . . . So I often go with the ol' standby of cheese, crackers, grapes. . . maybe some deli chicken or meat, if I'm up for it.

Since Sunday, I have been feeling good, bordering on great; every day seems to be better than the previous. Because the pain meds seem to be doing their job, I'm up on my feet more, stretching my right ankle and calf muscles so that (maybe) I will be able to walk 'normal' very soon. I've been doing the exercises that were given to me in the hospital last week; I have lost much strength and flexibility recently, so hopefully these 'work-outs' do the trick. They seem kind of wimpy but then, again, I haven't been able to to do much of anything for about three months, so gotta start somewhere . . . Jen took me to get my driver's license renewed the other day and commented that my gait seemed almost "normal," that to the untrained eye, no one would think twice that I had a limp. Pretty amazing progress, seeing that she was calling me Quasimodo for a while. She told me that at night, when she's lying in bed, nearly sleeping, sometimes I'd come up from the basement, and the the muffled "thump-drag . . . thump-drag . . . thump-drag . . . " of me walking through the darkened house is almost horror-movie material . . .

I seem to stay busy all afternoon lately, although I don't know what I've really accomplished . . .

making phone calls to various entities—CitiMortgage, Preferred One, government offices, etc. I've even had to call a few places about missing due dates on payments (something I've never done) as I had mis-placed the invoices in all the excitement that's surrounded us recently.

I have tried answering all the e-mails I get everyday in a timely fashion. It's nice to stay connected with everyone via the "Interweb," so thank you for taking a few minutes to drop me a line. My mouth still has some nasty sores which makes it difficult to talk after a few minutes, so e-mail and text messages have been great.

I've been keeping up on my laundry and some of the other household duties; I do what I can, as Jen has been pulled in many different directions as of late, and anything I can do is one less thing for her.

In between doing the above items, I try to keep food rolling in on a regular schedule, grab some sleep time when I can, and keep the house orderly. Time moves quickly, as before I know it, Jen is on her way home. It sounds rather boring after I re-read it, but that's my day. All day long, my job is to keep the pain level down, keep eating and gaining strength, and to try to get some sleep. That's my job right now. I'd rather be at a "real" job—you know, one that actually brought money in—but right now I have no other choice.

Since I'm feeling better now, check back for more frequent updates to The Blog. I have some fun ideas for some future posts. It's been great hearing from everyone—old classmates, friends of friends, relatives near and far . . . It does help me get through the day.

As a reminder, my e-mail is rjandrzejek@comcast.net My phone # is 651.336.6625, however due to Ick Mouth, I probably won't answer for the next few days, at least. (I kind of wanted to post a picture—a close-up!—of the sores on my inner lip: give me your feedback on this. Do you wanna see?!? Check the box: ❏"Yes! I LOVE gore!" or ❏"GOOD LORD, NO! I'm eating")

Talk at you soon! My love to all!
Bob

The Bobby A! Show . . .

When we last left our handsome hero, Alex Montenegro*, he was just discharged from the U of M hospital with a whole new drug regimen, a better grip on the nausea from his first round of chemo, a home-routine of PT exercises and an appetite to write home about . . .

Lest I start posting too often and sharing too much detail, turning Bob's life into a real-life Truman Show, I just wanted to give a quick update and be done (and don't think for a second that I didn't hear you all thinking, "There's no such thing as a quick update with you, Jen . . ." because I did. I have ears on the back of my head. Or, ummm, well . . . whatever. You know what I mean). I keep riding Bob's a$$ to get on the blog and make a personal appearance, but he hasn't had the energy. The new meds he's on are doing a better job at helping his pain, better than the oxycontin/oxycodone routine, but they make him very sleepy. In time, if it seems too much an interference, the med levels may have to be adjusted, but I think the sleep is good, for now, as he's had so little in literally months. Lots of naps pepper his days, so lucky you, dear readers, you're stuck with me. At least for the time being, or, as they say in the Andrzejek family, till he breaks his second wind . . .

Bob would like everyone to know that overall, he's feeling pretty good. Much better than a week ago, anyhow. He appreciates the phone calls, text messages, e-mails, prayers, messages left on the blog, kind thoughts and pixie dust, and said to keep 'em coming (he asked me the other day, "What the hell is all the pixie dust about, anyhow?" Clearly, he doesn't read the blog too thoroughly, hanging on to my every written word. I told him I let everyone know he's a pagan). He might not have the energy to respond, but he reads/hears/feels you all, and appreciates so much that you take time out of your busy days to think about him. Makes him feel good, feel connected to the world . . .

Over the past few days, since being discharged, actually since the last few days while still in the hospital, Bob's appetite has improved, relatively speaking. Even with feeling better, though, it's still hit and miss, and we can't always make rhyme or reason with it. His appetite and gaining weight are so important to help get him strong 'n' healthy as he approaches his third date with chemo in a few weeks. Definitely want to do all we can to avoid a repeat of last week. We had salmon, garlic mashed potatoes and broccoli for dinner last night, finished off with a bowl of ice cream. Breakfast has been a bowl of yogurt with fruit, a while later, an egg and cheese, an Ensure now and then.

Tonight, I made steak stir fry and rice. Bob thought it sounded good, but found he had a tough time with it, as beef is too hard to chew right now. It's a challenge finding foods that he can tolerate, due to sores on his tongue and in his mouth (chemo works by attacking fast-dividing cells . . . unfortunately, the drugs can't differentiate between cancer cells and other healthy yet fast-dividing cells of the body. Hair and skin cells divide rapidly and are most often affected by the chemo. Cells in the mouth are particularly affected). Certain things will sound appetizing, but then when he tries to eat, more often than not, it irritates his mouth. Not just spices, but textures—anything crispy, crunch, hard, rough, etc. Breads can be painful, as are crackers, chips, crunchy vegetables, even meat, because it requires more effort/pressure. So, it's been lots of soft foods—pudding, ice cream, mashed potatoes, risotto (no, I do not spend hours making creamy risotto for Bob. Trader Joe's comes through for me here, with bags of frozen risotto), cereal, yogurt, canned peaches, grapes. Cheese. Eggs. And sometimes he just has to try something to see if it'll work. So, he is getting variety, an increase in calories, and definitely getting more food in him, and that's a big ol' leap forward.

Last night, we slept in our bed together for the first time in months. Before y'all go and get all wink-wink, nudge-nudge-y on us, let it be known that I clung for dear life to my side of the mattress all night, for fear that I'd thrash about in my sleep, cross over to Bob's side and kick him in the leg. Funny as that sounds, it would not be. He said he was very self-conscious of me being next to him, because he's up so often at night, taking medication, going to the bathroom, moving around to change positions. I was awake whenever he made a move or a sound, whispering in the dark at him, "Are you okay?" "What's wrong?" "Do you need anything?" Not a great night of sleep for either of us. Even though it was the first time we'd shared the bed in what feels like forever, and it makes me sad to think about that, I think I'll go back to the couch tonight. We both need our sleep.

Tomorrow, I go back to work again. I'm getting used to these long weekends at home. Kind of cozy, kind of peaceful, in an odd sort of way. Maybe because it's winter, and what a helluva winter it's been, nice to just hunker down and ride it out in the comfort of home. I'm sure it's getting way old for Bob, though. On weekends, I run errands. Head to Target, grocery store, maybe meet up with a friend or family member on occasion. When Tuesday comes, I get to go back out into the world of work, friends, family again. He doesn't. I would love nothing more than to have our old life back, though. The life where we do things together, share in the activities, duties, goings on. I can't even begin to speak for Bob and the isolation, the disconnection, he is experiencing. So many things, I miss. . . countless more, he probably misses. But we will have all that back again. In time. But god, is this li'l redhead impatient. . .

Tune in tomorrow, when our dashing hero gets his first Netflix movie in the mail! The Hangover! Review to follow . . .

*When we were in Williamsburg, PA a few years back, we were touring one of the old settlements—Jamestown, perhaps? Don't remember for sure . . . but, we'd just signed the guest book and started walking up the path when a voice from behind us called out, "Excuse me! Excuse me!" Bob turned around and realized a man was talking to him. He asked Bob if he was Alex Montenegro. Bob replied, "No, why do you ask?" The stranger said, "I saw the name in the guest book, and that he was also from my hometown. You are the only person here who looks like his name could be Alex Montenegro . . ." We decided then that Alex Montenegro would be Bob's alter ego. . . or restaurant reservation name. Or great soap opera name. Or blog character name . . .

Home again, home again . . .

Bob was discharged from the U around 3 p.m. yesterday. Penny and Jim decided to leave before then, to beat the crappy freezing rain/snow/slush/god-only-knows-what-else that's purported to be descending upon us some time in the next 24 hours. They stayed long enough to help me clean house, chisel some leftover ice-snow off the deck and driveway, watch Rocco while I took Gaia to the vet and ran a few errands, and to take me to Warner Stellian to pick up my new little "deep freeze," and get it set up and plugged in, in the basement. WHEW! Busy morning!

I can't tell you how thrilled I am to have a freezer . . . a freezer of my own . . .it's the cutest thing, a giant cooler. I can buy all the frozen fruits, veggies, chicken breasts, flax seed and hemp waffles, ice cream, Jack's pizza's (those last two are for Bob) I want, without worry that I'll run out of room and have to dig out an igloo-freezer in the front yard or rent space in the neighbor's freezer for the overflow, or hear the wrath of Bob: "Are shrimp going to become extinct?!? Because we have 14 bags of shrimp in the freezer and no room for anything else, I was just wondering. . ."

I know it was a hard decision for Penny and Jim to leave before Bob came home. The weather reports are threatening freezing rain turning to snow, with winds picking up . . . could be a treacherous drive heading into southern MN, if they left too late. But, I know they really wanted to go to the hospital to pick Bob up, too. But that would mean they wouldn't leave here till after 4, when it's getting dark and potentially more dangerous. Their agony and heartache must span an endless chasm . . . shatters my heart into countless pieces, thinking about it. Jim said this before, when Bob had his heart attack, and he's said it again: "He may be your husband, Jen, but to me, he's still my little boy . . ." I promised to call when I got Bob home safe and sound.

After Penny and Jim left, I went to pick up Bob. No valet parking at the U on weekends, I discovered, so I had to park my own car. In a ramp. A whole block away. And it's raining. Dammit. A girl gets used to that royal treatment quickly . . . but, I quick discovered the fabulous tunnel system that connects the ramp to the hospital, so I didn't have to brave the elements at all! Just parked and scurried along, like a hamster in a Habitrail, over to the hospital. Bob was lounging on his bed, shoes and coat on, waiting for me. His nurse, the cutest, sweetest li'l rocker-chick who said, "like" and "excellent" a lot, but knew her shit and treated Bob with the utmost concern and attention, came in and gave him his discharge orders. I ran down to the pharmacy to pick up all his prescriptions. Included in his meds was something the staff at the U called "Magic Mouthwash." Cute. When I looked at the bottle the pharmacist handed me, on the label, I read the words, "Magic Mouthwash." Wow. They seriously call it that. It's a "proprietary blend" of lidocane, Maalox and benadryl that Bob's to use several times a day, to numb his mouth. (Okay, it's not really proprietary; after doing a Google search on it, it appears to be a common formula prescribed for mouth sores). It'll help with the sores, and also help him when he eats. Numbs the mouth so it's not so tender and sore. Kind of a double edged sword, however; eases the pain, but deadens the tastebuds . . . He dozed off most of the ride home, and when we got home, continued to doze on and off.

Lots of naps since we got home. I haven't seen him sleep this much in I don't know how long, though, I'm sure the new medications must account for some of it. I like to think he's making up for lost time . . .

He woke up early evening, saying he needed something to eat. After declining everything I could think of that we had in the house, I suggested the Ensure chocolate milk shake (with ice cream procured from my new freezer!); that sounded good to him. He ate half of it pushed the rest aside, said it was too rich . . . We decided that maybe the combination of ice cream and Ensure was a bit over-the-top, calorie-nutrient-density-overload. One or the other, ice cream or Ensure, just not together . . . I've already got a new malt in mind for next time—vanilla, malt powder, milk, and then I'll swirl chocolate and carmel within the malt. Maybe Dairy Queen is hiring . . .

I continued with laundry, made salsa, dishes . . . Bob finally decided to lie down on the bed in our bedroom. Within a few minutes, I heard loud, deep, rhythmic breathing. Technically, snoring. Three months ago, I'd have closed the bedroom door and turned up the TV in a huff. Now, I think it's the most beautiful sound I've heard in a long time . . .

Poetic Throwdown! with Bobby A . . .

So Bob reads the lovely poem my mom wrote for him, about him, the other night and says, "That's not a real poem. It doesn't rhyme. . ." He just loves to give my mom grief about that . . . he told her, in an e-mail, that now it was his turn to put pen to paper and compose a poem, that he wanted the power to make people cry with his written word, too.

So, when I arrived at Bob's room tonight after work, I had a foot-long Jimmy John's sub—the Vito, ALL meat and cheese in one hand and—get this—a large chocolate malt from the Grand Ol' Creamery, in the other, both special requests from him. He sucked down most of the malt and ate all the meat and cheese out of the sub (the bread wasn't appealing; might be too rough on his mouth, as it's kind of tender from the chemo). When he'd finished eating, he reached for a little notepad on the bedside table and said, "I need your help. I've got this great poem to post on the blog, but I can't quite finish it. Need to think of one last line—here, what do you think?" He read what he'd already composed and we started brainstorming, to finish it. After several minutes, we topped off what may be the most amazing piece of literature ever written. . .

Ladies and Gentlemen, we present to you, Poetic Throwdown! with Bobby A! This one goes out to Kathy . . .

West Lakeland Man

There once was a man from West Lakeland

Who had a sarcoma on his sacrum

He said with a grin

In pain once again

"If you think I've given up, you're mistaken!"

Thank you very much . . . he's here all night, ladies and gentlemen . . .

And gets to come home tomorrow!! As I said, they have him on a new pain regimen, an interesting combination of methadone and Dilauded, two synthetic opiate-based drugs. Methadone is most often used and recognized as a medication for treatment of opiate addiction (e.g. heroine) but is being used more and more, as a successful drug for chronic pain. Dilauded is also an opiate drug, and so far, these two seem to be working better than the other stuff he was taking. Time will tell.

Bob did more PT tonight, working on applying pressure to his entire right foot as he walks (the nerve pain he's experiencing travels down the back of his leg, skips his calf and returns in his foot, particularly the bottom of his foot and his heel; as such, he has been walking with a pronounced limp, favoring the ball of his foot. No doubt, he has some serious muscle weakness/tension in his leg and feet because of this). He's also working on trying to sit. That's a hard one, but hopefully, in time, with the new pain drugs and with the chemo acting on the tumor and shrinking it, he'll begin to feel some relief.

He called tonight, after I left, asking if I'd been watching the news. I hadn't. He said an announcement had been made through his wing that there was a lockdown or something, people weren't being allowed in the building due to a hazardous waste spill . . . so he might be glowing a bit when we pick him up . . .

We're also picking up our new little chest freezer tomorrow, so start dropping off that food y'all promised! (hehehe . . . I told Bob that if I played my cards right, with all the offers we've had from everyone, I won't have to cook for years!) I've wanted a freezer for ages, and though an upright would have been my preference, we really don't need one that big, for our needs. Just some overflow room, especially now that Bob's diggin' on ice cream. I'll buy it by the gallons now, if it gets him to eat something.

I've a big day tomorrow, so I should head to bed (well, I'm actually in bed right now. Just need to close the laptop and close the eyes . . .). Gotta bring Gaia to the vet, couple errands, then pick up Bob and the freezer (hope there's room in the van for the two of them . . .) Also, gotta clean the house somewhere in there. . . make Bob think I've actually done something the five days he's been gone . .

LOVE! to all! Jen

Thursday at the U . . .

So, I left for the U without brushing my teeth today . . . love that feeling of fuzzy little socks on my choppers all day. Talked to Bob in the morning before we all headed over the U. He said he ate all his breakfast this morning—I did a little "Whoo-hoo!" and congratulated him, but he said, "Don't get too excited—the portion sizes here aren't what you'd call generous. If they expect me to gain weight, they're gonna have to try harder than that—I mean, the danish I got was the size of an Oreo cookie. Could you ask my mom and dad to stop by SA or Holiday on their way in and pick up a real, full-sized bismark or something for me?" I take that as a sign that his appetite is back . . . at least for now!

Penny and Jim took the "morning shift" with Bob, and I arrived in the early afternoon. The team of people caring for Bob are doing a phenomenal job. They take his situation seriously and are working on getting the pain medications just right (going to be doing something different than before, different drug, even); the nutritionist came in and gave us some fabulous information about how to boost Bob's calorie intake (helluva problem to have, huh? I could have saved the insurance company a claim and shared my own guaranteed weight gain plan: Christmas cookies). She said it's important to go into chemotherapy in the best condition possible, and with a few more pounds, and suggested yummy things with lots of cheese, butter, ice cream, mmmmm . . . . oh, wait. . . that's for him, not me . . . 'course, it's stuff we already know, but hearing it from a professional may make that advice stick better than coming from the nagging wife. Started some PT and OT today; he got to take a walk around wing 7D. Said he almost got lost, it's such a maze. (I'll have to tell Bob when I see him tomorrow that the U's hospital, crazy though it is in layout, was designed as such so that at least 80% of the rooms have a good view of the city. Learned that from a client of mine who is a doc at the U.) Again, a busy day, but not nearly so crazy and disruptive as yesterday.

Bob'll be at the U most likely till Saturday. "They" (a collection of medical peeps) want to make sure everything is back on track before sending him home. Got a lot to monitor: sodium levels (almost up to par. Again, an interesting tidbit learned from my doc-client: Cysplatin, one of the chemo drugs Bob had, messes with the sodium levels of the patient and can lead to coma and/or kidney failure. The lethargy, weakness, headache, additional nausea and muscle cramps/convulsing in the PAs exam room were all likely the result of that. One of the docs at the U said he was surprised Bob wasn't worse off, because his sodium levels were so very low). Also got some exercises to work on in the hospital and at home, and hopefully have the nausea under control.

So. Another few more days at the U, and then home. Almost got one week under his belt already. Two more and it'll be time for the next phase of chemo. Keep those prayers, pixie dust, kind thoughts and words comin'! I'm learning, every day, more and more people are learning of Bob's situation and are praying for him. If I've said it before, I'll say it again, we can feel it. LOVE! to all!

For Bob at 3 a.m.

For Bob at 3 a.m.

we are all connect dot-to-dots
some reaching you from the city edge
some mountained by scenic views
others driving distances
or hopskotching those bumps in the road

we've come empty-handed except for love and prayer
why bring the detritus of life
when needed is one good story
a glass of your favorite wine
or that lovely red-head sleeping curled in a chair

we know the main crux of your journey
is too familiar and often solitary
but no journey is without a porter
or the barmaid or someone offering
thoughts on architecture or small cafes

seasons await you, the bird feeders,
the anxious dogs, the neighbors calling,
all those trees outside your window
bending strong, you attentive to
the head wind but not giving in

My mom wrote this poem for Bob last night, or early this morning, technically . . . my mom is a wonderful poet. I ramble, she flows. Made me cry. . . We are all waiting for you, Bob, to get better. You have no idea how many people are praying for you, near and far . . . I don't even think I realize the scope of it . . .

I thought this was so lovely, it deserved an entry of its own. Love you Bob, love you Mom.

Hospital notes . . .

So, I've been walking around with my sweater on backward all day and just noticed it when I was undressing for bed tonight. Seriously. I need Penny to give me the once-over before I leave the house . . . at least my shoes matched. Bob's hanging in there, at good ol' U of MN. He said today was a flurry of activity—every medical professional in the hospital paid him a visit, the oncologists, interns, phlebotomists, various nurses, PT, OT, EKG tech, nutritionist, dietitian, social worker, palliative care . . . did I forget anyone? So much for getting any rest. As Bob said when he had his heart attack, the hospital is a great place to get patched up, but a terrible place to get any rest. As soon as you start to feel better, he advises, make a run for your own bed!

I got up to the hospital early afternoon, with a bag of crunchy taco supremes from Toxic Hell (aka, Taco Bell). Bob has been craving them since he got here, so I popped over to the TB on Snelling and University and grabbed a few for him. They weren't as good as they sounded (I could have told him that . . .); he ate just one before pushing the bedside table aside. I, because I didn't eat breakfast, inhaled the other two and was quickly reminded why I don't make a run for the border too often. Tasted like . . . ummm, nevermind.

Penny and Jim had been with Bob since at least 10 a.m.; they left Bob and me alone when I arrived . . . while I was there, I saw what he meant about the constant stream of people coming into his room. After about an hour or so, the activity waned, and Bob fell asleep. He was no longer sleeping for ten minutes when I heard a loud voice hollerin' at the door (he's in a double room, farthest from the door, by the way), "Robert! PT is here!" I leaned over to see who owned the obnoxious voice. Jeeze Louise, Bob's rommmate was sleeping, too, for the love of Pete. . . a short, curt woman bustled in and said, "We're here for Robert's PT."

"He doesn't need PT right now. He really needs to sleep."

"We've been trying to get in here all day." I gave her the ol' stink eye and repeated my reply; she gave a big huff, turned around and left. Ooops. Maybe I shouldn't have done that. But, I don't get the whole demand for PT right now, and the constant interruptions by everyone and their grandmother, for that matter. I mean, I get it, in that I know Bob'll benefit from all of at some time, but right now, he needs his rest, he needs pain control, he needs nourishment, he needs fluid and electrolytes rebalanced. PT is the last of his worries, or at least can wait till tomorrow.

They're going to start him on a different pain medication—methadone, and see how he does with that. If it works better than the oxycontin, et. al that he's been taking, then it'll be the new drug of choice. I left a list of demands for Bob to show the oncologist, since it's so hard to time when his doctors are going to be by and when I will be there. I have concerns that I don't feel are yet fully addressed, and maybe that's because I'm not right there, hearing the docs talk. I want to make sure that Bob's pain, nausea and everything else is addressed and improved dramatically before he comes home. He needs to be able to take short walks, get up and about more than he has, and the biggest miracle would be to simply be able to sit. Sit at his desk. Sit in a car, sit on the steps to tie his shoe.

I'm no doctor (and I don't play one on TV), but I've said it once, and I'll say it over and over. The pain is the root of all the issues Bob's having. (well, disregarding the obvious source of the pain . . . not disregarding it, but, ummm . . . you know what I mean . . .) Pain interferes with everything—appetite, sleep, overall mood and feeling well, period. Pain controlled, a chance at a better quality of life. The rest will fall into place. . . if only it were that easy . . . and why couldn't it be?

Once again, eyelids heavy . . .time to sleep. Nite-nite . . .

Tuesday night, back in the hospital . . .

Gonna try to make this brief (I know, I know: promises, promises, Jen . . .). Bob was hospitalized tonight, this time due to complications from the chemo. He actually started out doing really well—felt great, sounded great and had a wonderful appetite (the likes of which I haven't seen in months), Thursday, Friday and even Saturday morning. But, as Saturday progressed, Bob's condition started to take a turn for the worse. By Sunday morning, he was overcome with nausea, despite all the anti-nausea meds prescribed after chemo. Despite my coaxing to try to eat and drink even little, bitty bits, he simply couldn't. The pain in his leg seemed to be getting worse, the amount of time he could be on his feet reduced even more. Yesterday, I tried calling the U's triage nurse, but got a recording telling me they're not in, due to the holiday. I asked Bob if he wanted me to call the oncology on-call doctor; wasn't necessary, he said, he could hold out till the next morning.

This morning, he seemed to be even worse, if that's possible. Getting him to choke down a tapioca pudding was just that—by choking it down. Barely ate half of it. He's starting this game with a negative score already, being so severely underweight. He has nothing, and I mean nothing, to spare in terms of fat. What he's giving up now is muscle, essential body nutrients, to the detriment of his body functions . . . I called the triage nurse and explained what was going on. That Bob just had his first round of chemo and doesn't seem to be doing well, hasn't eaten in 2 1/2 days, that he's already underweight, and doesn't have anything to spare. That his pain is getting worse, that he's not supposed to see the oncologist for another 3 weeks, before his next round of chemo but can't wait that long.

The triage nurse said, based on what I told her, it would be best if I could bring Bob in today. The oncologist's physician assistant had an open schedule, and she felt if Bob were admitted, things could be better assessed and under control. Bob called his parents to see if they could come up and take him to the afternoon appointment, as I had to work all day. They were more than happy to accommodate and told us they'd be here early afternoon, as Bob's appointment wasn't till 2:30.

I kept watching Bob all morning and just didn't feel right about what I was seeing. I called work, had our beautiful and o-so-capable receptionist, Kelcee, reschedule all my appointments for me. I told Bob I'm going to be accompanying him to his appointment, so I could tell the PA exactly what's been going on since his chemo on Thursday and Friday. By the time Penny and Jim arrived, I felt anxious and nervous. Bob was edgy, anything I did or said irritated the hell out of him . . . in hindsight, no wonder . . .

We finally got him down to the U, where they drew his blood, then shortly after, was brought in to see his oncologist's physician's assistant. Bob gave her the lowdown on how he was feeling, what's been going on since the chemo sessions, etc. I supplemented with my own observations and with any details I felt he missed. That his pain is not being managed by the drugs he's taking now. That he's severely underweight, and has nothing left to give, so the nausea and lack of appetite are really going to take a toll, and I worry about what's happening to him now, and what will happen over the course of the next few weeks . . . that he still can't sit, still can't be on his feel long, and because he's getting so weak, this morning was particularly alarming as he could barely stand long enough to take a quick shower before he stumbled back to the bed and collapsed.

The PA listened emphatically, then asked Bob, on a scale of 1-10, 10 being the worst pain imaginable, where his pain rated. He said about a 7. She asked more questions, and then said she felt it was best to admit Bob to the U's oncology wing. What he's experiencing are typical responses to chemo for patients, but Bob appears to be severely dehydrated and needs to have his nausea, lack of appetite and pain management addressed. The longer we sat in the exam room, the worse I could tell Bob's pain was getting. The PA called an order for a phentanyl pop (an opiate-based pain med in a lollypop-like form), which gets into the blood stream quicker than a pill. She asked if I could run up to the pharmacy on 3rd floor and pick it up while she tended to Bob, admitting paperwork, etc.

I went upstairs as directed, and as I was waiting, the PA showed up. She asked me if Bob had been showing any signs of distress, confusion and possible hallucinating. I looked at her with confusion; had no idea what she was talking about. She said he seemed to be grabbing out at things around him and was talking in a somewhat confused manner. She said she would go back down by him, and for me to come back down as soon as I could. By the time I picked up the prescription and got back down to Bob, I found him in near convulsions, with the PA and a nurse at his side, talking in soothing voices to him. I could only stand and watch in terror, wondering what the hell happened to him, in the short time I'd been gone. I learned later that what he was experiencing was called rigors, and is basically the chills on steroids. He was convulsing like he was having a seizure, his arms reaching outward, hands grabbing at unseen objects, yet was fully conscious and completely aware of his surroundings and us. The look of terror in his eyes startled me and I quickly went to his side and held his hand, trying to soothe and calm him, as the nurse and PA were doing.

I can't say how long the episode lasted; at least 45 minutes . . . the nurse kept reassuring me that, while horrifying to witness and even more terrifying to experience, rigors are not life threatening. Somehow, she managed to insert an IV line into his arm while he was shaking so violently, and through that, gave him several shots of Demerol and Ativan, both of which will work as muscle relaxants, pain relievers and to control the anxiety Bob was undoubtedly experiencing. She said the convulsions may be a response to an infection, it may be compounded by anxiety, it may be a response to the chemotherapy in some way. The PA said this was all the more reason to have Bob admitted. His white blood cell count may be totally off, or he may be fighting an infection, and being admitted will give us the answers. . . .

So to make a long story even longer, eventually, he got into the hospital, after the violent shaking finally, slowly subsided. More blood work, a chest x-ray, more tests were done. A few doctors finally came in to share their initial findings. We were told that Bob is severely dehydrated and that his sodium levels are dangerously low, that his electrolytes are severely out of balance. They're giving him IV fluids, along with sodium and magnesium, and some of Bob's favorite, IV pain meds. Yeah for Dilauded!

In the morning, he's going to meet with pain management specialists, to determine a better plan for keeping his pain under control. They seem to be able to do so in the hospital, with the wonderful IV drugs, but not at home with the oxycodone, etc. I might have to pull the Crazy (and I mean Crazy) Redhead act out again, because he will not be coming home until we have his fluids/minerals regulated, his appetite/nutrition addressed, and an effective pain plan in place.

I may have to do some heavy editing on this one in the a.m. Long, tiring day and I'm trying hard to remember everything as my eyelids are starting to droop, and my fingers make typo after typo. 'nite, all. Big love to everyone.

Rough waters . . .

Sunday night . . .

Nausea has crept up on Bob tonight and is now taking over. He hasn't eaten much all day, I told him he should eat a few small things—crackers, mint tea, something, to calm his stomach, but he's having a hard time coming up with anything that sounds even remotely palatable. This morning, the ribs and kraut I put in the crock pot smelled great to him. A few hours later, he asked me to light a candle downstairs, so he wouldn't smell the odors of cooking food wafting through the house. I need to call the triage nurse first thing tomorrow, to ask about this nausea thing, among my long list of questions and concerns. Bob simply can't afford to lose any more weight. I can't do anything to help him, and my presence downstairs is more an irritant right now. So I head upstairs and tell him to text me if he needs anything.

. . . it's times like now, later in the evening, Bob's downstairs, I'm up, alone with my thoughts, when the poisonous ones enter my mind and start multiplying, taking over, like a cancer. Spending much time at home lately, I have lots of quiet time to ponder the situation at hand, to try to make sense of even a little bit of this, and I'm at a loss . . . a complete and utter loss . . . it goes beyond "life isn't fair . . ." or "everything happens for a reason . . ."

Like trying to wrap my mind around the magnitude of an earthquake that wipes out 100's of thousands of people from this planet with one, great big shudder, that's a tough one, too . . . the list goes on . . . then I think, why am I wasting precious time and energy on the past? My focus has to be on the here and now, to help Bob get through this. It just has to be. At night, though, it's hard . . .

. . . times like this, I think of all the medical professionals who have told us, after the fact, in their self-congratulatory, hind-sighted manner, "Oh, yes, that radiation that Bob had as a child, that's most likely the cause of all this." Since Bob's heart attack nearly three years ago, and now this secondary cancer, that's what we hear, from doctors, from nurses, even those who weren't Bob's doctors—people I just talk to, clients at work, friends of friends who are in the medical field . . ."radiation can do that, radiation can do that . . ." Sofa king smart, after the fact aren't you all? Whole helluva lot of good that does anyone now. Where were all of you before the fall out? Twenty years ago, ten years ago, hell, just three years ago? If everyone else has been privy to this information, as it seems to be from their smug responses, then why was the very person who could have really used this info never informed? That radiation can come back to haunt you, wreak havoc on your body, years later, in disguises, when you least expect it, so be aware, beware. . .

. . .it's times like this, when I start thinking about the "shoulda, woulda, coulda's" that I want to tear my hair out, I become furious, vindictive, filled with toxic energy. That's when it teeters on the edge of becoming all-consuming, if I'd allow it. They're thoughts I have to push back because if I let 'em take center stage, the tears start. Then the headaches. The blood boils and the sheer and utter rage against a system that could have warned Bob years earlier about heart problems, secondary cancer, that could have spared him the agony of what he's experiencing later in life. . . that seems like it failed him in so many ways . . . my heart aches with the enormity of it, but the simple fact is, I can't turn back time . . .

And that's not where I need to be, wallowing in woulda-shoulda-coulda-land. Right now, it takes every fiber of my being to not lash out at a system that seems to have known about the potential for all of this to have happened, but did nothing to prepare us for it. The longer we're on this ride, the more I see a system of reaction instead of proaction. A system that treats symptoms instead of causes. A system with blinders, with egos, with super-specialties that get in the way and cloud the whole picture . . . but I have to let all that go, push it aside. At the very least, try to manufacture the seething anger into something else, something more productive . . . it's the very same system that saved Bob's life 30 years ago, saved his life three years ago, and will save his life again.

Monday morning . . .

Doggies woke me up around 6-ish this a.m.. I stood at the top of the steps and peeked down into the family room. TV was on, but Bob was lying with his back to it. I figured he must be sleeping, so I tiptoed back upstairs, and started my coffee and headed to my laptop to finish this rant. Few minutes later, I heard the patio door slide open and close again downstairs. Bob must have let Rocco out. I poured a cup of coffee and went back downstairs. Bob was now lying facing the TV. I knelt beside the futon and kissed his forehead. "How'd your night go?" I asked. "Not too bad," he said quietly, "I got some sleep, eventually, last night and I'm feeling a little better this morning. Not nearly as nauseous. Not great, but not as bad as last night." Maybe that was the worst of it . . . he asked if I'd bring him a glass of milk and one of the chocolate-caramel bars his mom had made. "I know that sounds weird, but I'm really craving one of those and a little milk." Good sign . . . a little while later, he asked if I'd bring him an egg with cheese, and a glass of o.j. . . . maybe the worst has passed, for now.

I run a few errands in the afternoon, meet my sister, Jill and her 4 year old daughter, Amelia, in St. Paul at an adorable consignment store in a beautiful old house on Grand Avenue called, appropriately, My Sisters' Closet. Upstairs, I find a cute pair of tall black leather designer boots that I just have to try on because a girl can't have too many pairs of black boots. As I pull up the zipper on one of the boots, it stops suddenly 1/2 way up my leg and doesn't go any further.

Upon closer inspection, I see the zipper is caught on a flap of leather and won't let go. I call for Jill to come help. Both of us, working at different angles, try to pull, tug, heave and ho, but the zipper just won't give. Several minutes and countless cuss words later, I'm starting to work up a sweat and am in mini-panic mode. I send Jill for help. She goes downstairs and comes back up with a pair of pliers. As she starts tugging and yanking at the zipper with the pliers, I tug and pull in opposite direction on the boot; both of us are grunting, groaning, laughing maniacally, Jill has to pee, hissing swear words through our teeth because Amelia, joyfully trying on sparkly heels, is only arm's length away.

Several more minutes go by and neither realize Amelia's talking to us until she says in her loudest inside voice, "Mommy! Is my nose bleeding?!" We both stop tugging and look at Amelia, who has blood trickling from her nose down to her upper lip. I'm stuck, literally, with a $50 boot on my left foot, Jill's got a kid bleeding all over the place. Classy chicks. I dig a pack of kleenex out of my purse and mop up Miss A's face. Finally, after an eternity of struggling and swearing, we get the zipper down, my foot out, and Amelia's nose bleed in control. I leave without the boots, and head home. Gotta stop at Target for more hand sanitizer and Clorox wipes, and for non-alcoholic mouth rinse for Bob.

I stop at the Dollar Tree; I want Valentine's decorations for my Christmas tree. I find red foil garland and wide fabric ribbon with a valentine design imprinted on it. This'll work. I've decided to keep the tree up, at least through the winter. It's out on my screened deck off the living room, so it's out of the way. I love the way my living room glows with its soft golden light in the early morning and late night hours. Bob likes it, too. I'm going to decorate it for the holidays—hearts, shamrocks, eggs, maybe little flags and poppies for Memorial day . . .

I'm home for a few hours before I have to bring Rocco to Basic Obedience. I've asked Bob repeatedly if he wants anything to eat, but he refuses. Nothing sounds good or tastes good. I continually remind him that he has to eat, even if it's just many tiny portions throughout the day. He has to keep his strength up, keep infections at bay. So easy for me to say, always so easy he managed to slowly eat a tapioca pudding cup . . . Rocco made me so proud at class tonight, better than last week, where he was the dunce of the night. Was on the ball tonight, despite the traumatic car ride to class. No vomit, though. When I get home, Bob asks me to make a Jack's pizza for him. He ate maybe the equivalent of a slice.

U of MN's Cancer Center offices are closed for the MLK holiday. Will have to call tomorrow with my growing laundry list of questions and concerns . . .

Fiesta Salsa vs. Count Chocula

Made this kick-butt salsa last night. Craving some color in my food, some veggies, fruit other than citrus, despite this being the worst time of year for produce in MN. This stuff not only makes a great salsa for chips, but also a great side for chicken, steak, any meat, really, OR just by itself - TONS of veggies, beans, olive oil, cider vinegar. Sooooo addicting! Good eatin'!

1 green pepper

1 red pepper

1 yellow pepper

1 orange pepper

5 stalks celery

1 onion (any kind - red, yellow, white)

1 can corn

1 can black beans (I like the kind with jalapenos in it, for kick!)

1 can pinto beans

1/2 c. olive oil

1/2 c. apple cider vinegar

1/2 c sugar (I halved this amount; do what you want)

Drain/rinse corn and beans, put in BIG bowl (believe me, this makes a TON of salsa. 2000 pounds worth—weighed it myself. You will need a big bowl). Dice veggies and add to bean/corn mixture. Boil oil, vinegar and sugar on stovetop, stirring occasionally, till sugar dissolves. Cool, then pour over veggie mixture, mix up. refrigerate for a few hours. YUM! Will keep refrigerated 2 weeks, if it lasts that long!

I had a bowl of salsa with 2 hard boiled eggs for breakfast. Bob had a bowl of Count Chocula. Didn't even know they made the stuff any more. He'd requested it a while back, and every time I'm in the grocery store, I look for it, to no avail. Yesterday, I'm in Uber-Target in Roseville, and the Count nearly jumped off the shelf and bit me in the neck as I rolled through the cereal aisle looking for Kashi Flax Seed and Almond Crunch. Remember Franken Berry? Boo Berry? Are any of those still around? Didn't even look to see, I was so taken, so mesmerized by the Count. Maybe General Mills brought him back to boost sales, to ride the uncomfortable, creepy (and I mean creepy in a 40-year-old-women-throwing-panties-at-undead-moody-post-pubescent-bloodsucker kind of creepy), yet pervasive vampire wave that's sweeping the nation. As always, Bob is light years a head of the trends . . . (He'll tell you that back in high school, he was grunge before grunge was grunge. Just ask him.)

Threw some ribs and sauerkraut, with apples, onion and a touch of brown sugar in the Crock Pot for dinner later. Bob said it sounds good, but whether or not he'll eat remains to be seen. Got a few errands to run, wanna run over and see Gretchen and Brian's fresh, new li'l puppies (born just this week—three baby black labs born to proud Mama Gracie! Maybe later, I'll try to post pictures). Later, I'm going to make cilantro pesto and a batch of spinach smoothies. I know y'all are groaning in disgust. I can hear you: "Jennifer! This is Operation Fatten Bob Up," not "Operation Make Bob Throw Up!" You all need to try spinach smoothies. Today. Throw a bunch of bunch of fresh spinach, a cup or so of vanilla yogurt (I use whole milk yogurt), frozen banana or two and any other frozen fruit you want, in a blender. Splash of juice of choice. Blend well. Toss a handful of flaxseed or other seeds, if you wish, before serving. Mind-boggling goodness in a glass. I bet you could even get kids to eat it if you called it Frog in a Blender, 'cuz that's what it ends up looking like. I initially added cocoa powder when I first started making these, thinking it needed a little chocolate flavor, now I make 'em pure and unadulterated. So fresh, so creamy, and fruity, so dang good! Love 'em! Bob loves 'em, too, but stuff like that—healthy stuff—hasn't been appealing to him lately. Heck, even unhealthy stuff is lacking in appeal the past few days. Hopefully, the nausea thing will pass soon.

I'll try calling the triage nurse tomorrow, to get an idea about the course of action we need to take over the next three weeks before his next round of chemo. Bob and I were discussing his situation, and three more weeks of not being able to sit is going to send him over the edge. There's got to be something better that he can take, some other pain medication he can use, so he can sit, if only for a short time, while we wait for the next round . . .

Chemo reflections . . .

Days I and II of chemotherapy are already behind us, now a Bob is resting, I'm writing . . . he said he's feeling a little nauseous today, nothing major, but has a li'l trash can at the head of the bed as he sleeps, just in case.

Bob's parents, Penny and Jim, were up since Wednesday night and just left this afternoon, after taking Bob back to the U for a shot of Neulasta, a drug that's given post-chemo to boost white blood cell production and help resist infections. Chemo kills all fast growing cells; cancer and red and white blood cells are fast growing cells. As such, a patient undergoing chemotherapy is at a great risk for infections, which can make them very sick, interfere with treatment, delay everything . . . a big ol' snowball effect. Hence, the Neulasta. Bob could have taken the injection home after Friday's treatment and done the injection himself, to the tune of $625 out of pocket, or drive back to the U and have it done, where insurance would pick up the cost. You do the math, and while you're at it, figure out why doing the dirty work yourself costs more than going back to the clinic and having a trained professional do it. Just one more item in a long list of what I'm seeing is so wrong with "the system . . ."

Was great to have P&J here for a few days—they came bearing bags of food and energy to burn. They took Bob to his first chemo appointment on Thursday and picked him up after the 2nd on Friday. It was such a wonderful thing to have the extra help (even though I'm a stubborn li'l redhead and have a hard time asking for it . . . or accepting it) and their company. They were chomping at the bit for Bob to say the word to come on up and just be with him. I know Bob was glad to have them here, and to have someone with him while I was at work. (Jim, incidentally, just finished radiation for prostate cancer. He's in great spirits, has a great prognosis and we're thankful the docs caught it early enough so his treatment didn't involve surgery. What a trooper! Dude's 72 years old, and can run circles around others 1/2 his age!)

I took Bob to his 7 a.m. date with Chemo on Friday. I wanted to spend a few hours with him before I went to work. Believe it or not, the 7 a.m. appointment is a great time to go in. We often get up early anyhow these days—4 a.m. is not unusual in this house, especially for Bob–traffic is smooth as buttah, and leaving at 6:15, we're still get to the U in Mpls in no time.

As we were sitting in the hallway of the Masonic Cancer Center, waiting for the clinic to open, an elderly couple rounded the corner and I heard one of them say, "Look here! Can't believe someone's here before us, honey!" I smiled, we shared some pleasant exchanges about the traffic, weather, etc. I couldn't say for sure, but I'd guess they were at least in their 70's, but sharp as a tack and clearly "regulars" at the ol' Bar Infusion. Clinic staff, as they entered the building to start their day, greeted the couple by name. They were like campground hosts at state parks, laughing, joking around with the staff and other patients. Wife went into the Infusion room and came out to announce she'd staked out "their spot." Husband asked if we were here for the first time. I said, "Well, technically, second. He stared yesterday." He gave us a big grin. "Don't worry, you'll figure it all out before long." I asked how long he's been coming for chemo. He gave a big sigh, and said, "Well, I keep all my appointments and everything on my computer at home, but overall, it's been about 11 years." Holy shit. With attitude to boot. I love this man. I need to think of him and his wife when I start slipping in my role . . .

As Bob said, his nurse (at least for now), is the niece of very good friends of P & J's. She's awesome. He got the VIP room again on Friday. Next to the bathroom, which is convenient for Bob, as he's got to wheel his IV pump with him (the photo I posted is Bob in the VIP Quarters, with his Grand Marnier IV . . . he doesn't like the photo, thinks he looks like he's on death's doorstep. I think he looks handsome. He's waving to the camera, and is a little sleepy . . .) My rocker is next to the door, so I see everyone peering in at us when they go to the can . . . next time, I'm coming with big Sophia Loren sunglasses, a newspaper to hide behind, just for fun. Do you know who we are?!? My 2 1/2 hour shift went quickly; Bob actually slept much of the time. I listened to the news on the little TV monitor above his bead and surfed the web on my phone. Bob's good friend, Paul, called while I was with Bob. He's got a work assignment that will require lots of travel for him, and offered the use of his condo in Mpls., should we need/want a place to crash/stay/escape to as needed. "Gotta take care of my peeps," he told me. He's a good man, that Paulie. Love him!

Penny made the legendary Polish Penicillin last night for dinner. Big, fat dumplings swimming in chicken broth, with juicy, golden browned chicken legs on the side—it was all that those Andrzejeks said it would be, and more. . . even though there was not even one itty-bitty, teenie-tiny little vegetable floating around in the soup, it was sofa king good, I think we all had two or three bowls each—even Bob! Since P & J have been here, his appetite has been almost like the good ol' days. Maybe that is the trick—have a few more peeps hanging around . . . normally, it's just us and the dogs. Might have to look into that, chat with Bob a bit about the thought of a scheduled, round the clock company. Something tells me he's gonna shoot that one down, but ya never know . . . Regardless, he's eating more than I've seen him do in weeks, and that makes me very happy.

As I was leaving for work this morning, Penny asked, "Where are the cleaning supplies? I'll clean the bathrooms for you, mop the floors—whatever you need done, Jen, just tell me!" Those two . . . the energy of teenagers . . . A girl could get used to this. We have room in the basement, maybe I can persuade them to move in, at least for the time being . . . though Rocco likes to get intimate with Gramma P's foot now and then, that could get old real fast. Gotta remember, he is from Kentucky.

Now is another episode in the waiting game. Three weeks till Bob goes in for the next round of chemo, which is when they'll hospitalize him for 5 days and administer lethal doses of a drug called methotrexate, along with an antidote. Sometimes, there is such a thing as too much information. . .

First thoughts on first days of chemo . . . (from Bob!)

Well, 2 days of chemo, and I feel good - AS OF RIGHT NOW! Our wonderful nurse told me that day 3 and 4 may be the roughest for me, although she was encouraged that last night (after first infusion) didn't give me any complications of nauseau, etc. OK, my taste buds were off, so I didn't run for Mom's beef stew last night and instead had a hankerin' for a Banquet Chicken TV Dinner, but I honestly felt just great. Even got some sleep last night before I woke up and found my dad wondering around our basement at 4 a.m., trying to find the remote. We talked health, golf, the dogs, what the day would bring, etc.

I knew I was up for the day; wasn't sure about Dad. Jen was the driver this morning and Mom and Dad would come later, at 10—11a.m. for the pick-up. [As an aside, I can not drive right now for a number of reasons: my license has expired, I can not yet fully sit without terrible pain (as we've been relating ad nauseaum, but it's one of the toughest things I'm dealing with right now) and I'm on narcotics, which is just like a DUI.]

All went well at treatment this morning as stated, as did yesterday. It is somewhat comforting and relaxing in my own special treatment room—we found out yesterday that my nurse is the niece of dear friends of my parents, and BOOM!, we're in the VIP room! Take it when you can get it, I guess. I'm sure the rest of the treatment would have been the same, but the room was nice!

I am at home now trying to relax. Sent the parents in to town for narcotics and food - provisions for the weekend - and they just got home in short time. I laugh, because that same trip would take 4 hours for Jen to complete. Mom has promised to make special chicken soup tonight, aka Polish penicillin. YUMMY!

For some reason, I just can't sleep right now. Hope to fall off for a bit soon here. Never realized how important sleep was until recently. Scheduled for a shot Saturday afternoon at the U to help my white blood count. They said I could take a syringe home and do it myself, and insurance would charge me $625.00 or come to the U and it costs me nothing. HMMMMmmmmm . . . you do the math . . .

We'll let you know how things are going in a few days, unless Jen wants to write earlier.
Thanks for all your thoughts and encouragement. Please keep in touch!

Bob

First day of chemo tomorrow

Just a quick note (I promise . . . ) that tomorrow a.m. is Bob's first round of chemo. He'll be at the U all day, and then back at it for more on Friday. His mom and dad came up tonight and are going to take him to the appointment and bring him home; I'll walk the doggies and stop in to see him on my way to work. Tomorrow's treatment is expected to last several hours. . .

If you could all just send up a little prayer, think a good thought, throw pixie dust, whatever it is you do Bob's way, I'd so appreciate it and I know he would too. I'm tellin' ya, it all helps; we feel it . . . It's been all talk up till now (mostly from diarrhea mouth here) . . . now that the "big day" is here, it all comes crashing in, in a very scary way, how real this is . . . all for now.

peace,

Jen

Day One at the U, and I Just Gotta Drop the F-Bomb . . .

Tuesday, January 12, 2010

Lordy, lordy. Poor Bob and his crazy side kick. . . . I seem to develop Hospital Induced Tourette's whenever I'm in a big medical facility—like a little worm infiltrates my brain, takes over my verbal skills and suddenly, I just sputter, cry and swear like a sailor . . . more on that later . . .

Today kicked off the first of what will be many long trips to the U. I'm thinking we should just sell our house and snag a cheap apartment close to the U, for convenience's sake. I think I already paid the equivalent of one month's mortgage in parking fees . . . gotta get a second job just to pay for that, as it appears there's only valet parking available at the U, unless I want to try to piggyback Bob several blocks from the nearest parking ramp, which god only knows where that is. We got him a cane the other day, incidentally, which does help immensely with his walking. Now all he needs is a bow-tie, and he'll be rockin' the "distinguished gentleman" look.

His first appointment was at 7 a.m. We met with the oncologist, Dr. S., who is running the show at this point, to go over Bob's treatment plan, which begins with chemotherapy. We're told that this sarcoma has originated from the bone (his sacrum), so they're treating it as an osteosarcoma, a type of bone cancer. We have also been told that once again, that radiation that he had as a kid, to treat his Hodgkin's, is very likely the cause of this tumor. Even though no other tumors were detected in the full scan done at United, chemo is done as a precautionary and preliminary measure, as sarcoma cells tend to spread rapidly; a small tumor not detected by a scan can quickly multiply and grow and cause more problems. As the doc showed us in a wonderful visual of a pen dot on paper, "This speck represents 100,000 cancer cells." Got it, doc. Big concerns are that because Bob has already been exposed to chemo and radiation, his body, as is evident by the heart attack and now tumor, are already affected. Big concerns . . .

Dr. S then started talking about scheduling the first of chemo on the 14th of January. As in this Thursday. Now that's what I'm talkin' 'bout! Let's roll! The schedule of chemo is still a little fuzzy, we'll have to clarify that when we head back again tomorrow; it sounds like he'll be given three different types of chemo. Two will be administered Thursday and Friday, then he'll wait three weeks and go back for the third. The third will actually require a five day stint in the hospital, as they treat him with lethal doses of the drug and then have to have an antidote to counteract the poison. Miracles of modern (?) medicine . . . sounds rather barbaric, to me, but hey, I'm not the doctor.

Then, we're told that one of the medications he wants to use is a very effective one, called Doxil, but is not approved by the FDA for use on sarcomas. They need to get permission to use it, and have to find out if Bob's insurance will cover it. He made it sound like a little paperwork was involved (or maybe that's just what we heard), and that we could finish it when we came back for the scan. Okey-dokey, Doc, we said, and off we went. Since his next appointment wasn't until 12:45, we went home so Bob could get something to eat (this time, gourmet mac & cheese—withe extra shredded parmesan—peas and sliced Granny Smith apple. Looked like school lunch. He ate it all up! Yum!), rest a little, and then turn right around and head back to the U.

The MUGA scan involved pumping Bob full of radioactive material so they could get a very detailed picture of his heart. The chemo can be very hard on the whole body, heart in particular. Since he's already had a heart attack, they'll take an initial scan now, and then do another one after the chemo run, to check things out. The scan took about an hour. When that was finished, we slowly made our way back to the Masonic Cancer Center, to talk to the financial person about the insurance/drug thing.

At 7 a.m. the clinic was peaceful and quite. By 2 p.m. the place was a zoo, teeming with people of all ages—tiny babies to wizened old men and everyone in between. So many people fighting their own battles with cancer . . . the receptionist saw us, called Bob's name (I nudged him and said, "See? One visit, and already you're a regular!") and said Tomas, the financial counselor, would be with us shortly. Financial counselor? We found a corner in the waiting room and shortly, a man with a portfolio appeared, and was scanning the room. He walked up to us and introduced himself as Tomas and said we could find a room that was a little more private; he lead us down a hallway to a quiet corner of the clinic, and began to explain the situation.

The gist of it was, the drug, Doxil, isn't "allowed" to be used for treatment of sarcomas (evidently, the wonderful, red-tape entwined entity of the FDA has limited the scope of use of this drug), and basically, the U needs to find out how they're going to get paid if the drug is used. We have to send a request in to Bob's insurance company, and it's possible they will deny the coverage. There is a "Plan B" offered by Johnson & Johnson that comes into play if a patient's insurance denies coverage, but it's based on income, which, if they go by our most recent W-2's, we're well beyond that. If one falls within their guidelines, they pay 100%. If not, we pay a percentage of the cost of the drug. "What's the cost?" Bob asked, thinking if it were maybe $500 or so, we could swing the first one. Each dose is $10,000, Tomas tells us. Holy sh@t. . .We're then told that it usually takes 7-10 business days to hear back from insurance companies on their decision.

So basically, if we want to use this drug, we have to wait at least a week until we get approval from either Bob's insurance or the back up plan (for which we'll also have to write a hardship letter, begging to disregard our W-2's and take into consideration that Bob hasn't been working for almost 3 months, and we're not sure when he'll be back working . . .). I looked at him and said, "So we can't start his chemo on Thursday?" Well, you can, we're told, but you will be financially responsible for at least the first treatment, because we won't know anything from your insurance for at least a week . . . that's when the f-bombs dropped . . . no, no, NO!!!! that's not okay! Who has $10,000 just lying around?! How do people do this?! (f-bombs inserted here. . .) You have no idea how hard this has been on Bob—we were told his chemo would start on Thursday, and we cannot, will not wait another week or longer! (few more f-bombs here and there) I wish I could take you and the doctor home with me and live with us for even just a few hours, to see how Bob lives—ZERO quality of life! This is not acceptable! You can't tell me this is the only drug used to treat this type of cancer—we want another option! He needs to start treatment now, not ten days from now! (few more f-bombs peppered here and there . . . lots of crying, too)

Tomas kept his composure with dignity and professionalism, and after my little tirade, he said, "Let me go get Dr. S., and he can talk with you about other possible options." I'm crying, Bob's pacing, and just a few minutes later, Dr. S returns. I let Bob do the talking this time, and after hearing him out, Dr. S says there is another drug that is as effective as Doxil, but he would need a port inserted before Thursday. He agreed that we should do what it takes to get Bob's chemo going ASAP. He said we should still work on getting approval for the Doxil and if it's approved, he could switch drugs. They schedule the port appointment for 8:30 a.m. the following day. Praises be . . . options are good . . .

Wednesday, Jan. 13, 2010

Took Bob down to Riverside this a.m., to get his port, or PICC line, inserted. After the PICC was inserted, he needed a chest x-ray to make sure the PICC line was in the right place. A BIG virtual hug goes to Janet and Linda, the kind and compassionate nurses who took care of him at Fairview, and who thought outside the box in requesting the x-ray machine be brought to Bob, instead of the other way around, so he wouldn't have had to relive the Trail of Tears he experienced at United. A BIG thumbs down to Ms. Crabbypants from radiology who had to bring the x-ray machine (which is on wheels, is not that big, and totally transportable—the nurses say they do that all the time—which Bob is not) up to Bob, and gave him attitude the whole time ("Well, how'd you manage to walk up here?" was one of her wonderful customer-service oriented comments). Bob killed her with kindness, so hopefully she'll think twice about her interaction with patients. Incidentally, Linda has a 19 year old daughter who was recently diagnosed with Hodgkin's. She was moved by Bob's story, and said after seeing what he's going through, she's going to make sure her daughter's follow-up care is monitored closely.

As we were waiting for the results of the x-ray, Bob said that perhaps, when he's through with all this, his mission is to be an advocate for children with cancer, and the importance of screening for potential problems after treatment. If only we'd known years ago what we're finally learning now, about how all that radiation can come back to haunt a person . . .

So late this morning, when we got home from Fairview, Bob was resting, and I was out walking the dogs before work. Bob got a call from Rhonda D., Sr. Reimbursement Analyst/Oncology at the U. She left Bob a message that she received a phone call from Preferred One, Bob's insurance, and got approval for the Doxin. The Doxin doesn't use a PICC line, it's an IV pump . . . so, maybe now we can use his PICC lines for tequilla shots . . . the ball keeps rolling. . . . and the universe sometimes moves in strange and wondrous ways . . .