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.

Bob's Coming Out Party!

Hey! We'd like to invite everyone to Bob's Coming Out Party! What's coming out? His hair. The mouth sores are healing, and now his hair is falling out. Over the past few days, each time he comes out of the shower, he's holding what looks like two small rodents in each hand. When I shower, I see strands of beautiful, silky, Superman blue-black hair, sticking to the walls of the shower, the bathroom floor, the inside of the sink. It sticks to my hands when I run them through his hair. Right now, if you'd see him, you might not notice, but I can tell it's much thinner. Maybe it'll taper off over the next few days, maybe not. I brought my shears home the other night, with the idea that by cutting his hair really short, it won't be as traumatic if he loses it all. He doesn't care. Not worried about it, he tells me. It'll grow back. He said he's got his Mad Bomber hat ready (you know—Elmer Fudd-inspired, lined in fur, ear flaps), in case.

We spent half of the day yesterday at the U, for a few follow-up appointments. Bob was able to walk the entire way (with a few stops here and there), which is a huge improvement, a small miracle in his world, really, since the last time he was there. Upon check-in at the Masonic Clinic, we saw the nurse who had worked with him two weeks ago when he went into convulsions and she had to insert an IV of morphine while he was shaking like an epileptic (I can say that, I have epilepsy). She was good. She recognized Bob right away and came around the counter to say "Hi." Said he looked so much better than the last time she saw him, and wished him well with the next round. The U's oncology staff have been nothing short of incredible throughout all of this. The nurses so good at what they do, and compassionate to boot. The doctors take their role very seriously; if there is even a slight change in a patient's condition, they are adamant about giving them a call to check in. Pretty incredible experience, thus far.

The Masonic Clinic is a chaotic place. People of all ages, most accompanied by a friend or family member (some with what looks like their entire family—mom, dad, siblings, aunts, uncles, second cousins thrice removed—in tow). The little kids break my heart. More often than not, as soon as their name is called, and mom or dad picks them up to head back to whatever it is they're there for, they start crying, screaming . . . they know the routine. All the patients break my heart, really, but those little babes . . . no one can tell me "everything happens for a reason" with a straight face on that one . . .

Bob first had an appointment with Dr. S, the oncologist heading his chemo plan. It was combo-appointment: a follow-up to the chemo he just had as well as a primer for things to come. Since he wasn't the admitting doctor when Bob went into the hospital two weeks ago, Dr. S got the low-down on on how Bob has been doing since then, got details on the hospital stay, seemed concerned that Bob has had so many side effects from the first round of chemo. Depending on how things go, they may have to tweak those drugs next time, Doc S. said.

(A little aside here: I'm sitting in the recliner in the dimly lit living room writing, Bob is lying on the couch, watching the morning news thats softly on in the background. Bob just punctuated the serene setting with, "Thank god it's Friday. I love Fridays . . ." ummmm . . . maybe that's not funny to y'all, but I almost dropped the laptop over here . . . 'cause, see, his days all just kinda blend together and usually he doesn't even know what day it is, and then here I'm getting all sappy and emotional on my laptop, and sometimes his comic timing is right on . . .)

For the upcoming round, Bob will be hospitalized, then given a "lethal dose" (Doc's exact words) of a drug called methotrexate. The drug is only given once, through IV, but then his body will be flushed with all kinds of fluids and an antidote, to wash the drug out of his system once the job is done. According to Dr. S, even though they will nearly kill him with this drug, it is usually tolerated quite well, very few side effects. I shit you not. Doc S. said pack for the stay as if he's going on vacation because it'll be a whole lotta sitting around. He'll be able to move about, do whatever he wants. He's not sure about having visitors, so we'll let you know at the time, if he's up for it. The length of time he's hospitalized will depend on how quickly the drug is flushed from Bob's body. Five days is about average. He'll be sent home for a few days, and then this will be repeated. Then, home again for a few days, followed by another round of Doxil and Cisplatin (the first two drugs he had, which made him so sick). This will bring us to the end of February.

At that point, he'll probably have another scan, to see how the tumor is responding to the chemo. He may have another round in the hospital with methotrexate; we have to wait and see. Kinda sounds like the theme here . . .

After the appointment with Dr. S., we headed over to the Phillips-Wangensteen building, which is a little jaunt through the U's Habitrail tunnel system, to Dr. K, in Palliative Care. Bob held up pretty well, considering this is the farthest he's walked since all of this began. Oh, wait, I forgot about the Trail of Tears back at United . . . the farthest he's walked without excruciating, debilitating pain, that is. I had to look up what Palliative Care is, as I'd never heard of it before all this began—sounded scary, but actually, has turned out to be one of Bob's best allies. This Dream Team of pain management specialists helped come up with the methadone/Dilauded drug combo, which is working wonders with Bob's pain. Their job is to simply manage his pain, and assess Bob's quality of life as he goes through all this, help accommodate in any way they can. We find our way to the clinic, and are seen by Dr. K in short order. She's a cool woman; very compassionate, very knowledgeable, so concerned that Bob's pain is being managed as best it can. Based on what Bob has told her about how his leg is doing, she changed the dosage of his methadone, increasing it slightly, so that he doesn't have to rely so much on the Dilauded for breakthrough pain.

By this time, it's nearly noon and Bob is beat. I run back to the hospital, retrieve the car and pick him up in front of the Phillip Wangensteen building. On the way home, I stop at the Ho Ho Gourmet for some Chinese takeout. We drive by it daily, coming into St. Paul on 94, but have never been there. Bob was craving some fried rice and some hot, spicy Szechuan chicken. The women working at the counter were so dang nice, and I had such high hopes for the grub, but alas, was sorely disappointing. . .bland, kind of tasteless, fried rice had such a fishy taste . . . here Gaia, here Rocco . . .

So, a few more days of waiting, some time to get at least a few more pounds on Bob before he checks into Club Chemo for the next phase of treatment. He might add a blog or two before then, depends on how he's feeling. . . stay tuned! Have a great weekend, all! Drive safely (it's ugly out there this morning)! LOVE!

Jen

"Well, Jen, it just goes to show you, it's always something . . ."

The following message is from our hero . . .

Hey kids! Bob here! Wednesday evening, February 3rd. Tomorrow, an important doctor appointment (as far as I'm concerned) as I will hopefully find out what the next few weeks—or even months—might hold for me. The next time chemicals will be going into my body will be during an extended stay at the U of MN Hospital (five days), so I REALLY want to know the details of all this. I have no idea if I will be deathly ill during this treatment, or if it's just to monitor me closely (we were told I would be given "near lethal doses" of the drug, methotrexate, with an antidote on hand to counteract the effects. Let's hope the person responsible for that job is paying attention. . . ). Not knowing is always difficult. The last three weeks have been hard enough, so I'd really like to think that they gave the roughest drugs first and now are sending me off to Club Chemo at the end as a way to pamper me during the last few days of Round 1. I will let everyone know when I find out more.

So, what's been ailing me? . . . Sorry to bother you with this, but apparently some inquiring minds want to know . . .

*Most of the sores in my mouth are gone, and I've been able to eat a much wider variety of foods this week. I still have a few lingering sores on my tongue, on the roof of my mouth and and a couple on the inside of my lip. For a while, Jen said that the lip sores looked like I had the chain of Hawaiian Islands tattooed on my inner lip; now only the Big Island remains. My favorite foods (big gooey pepperoni sausage pizza, peppercorn New York strip, home made nachos with all the trimmin's . . .) remain a bit elusive at the moment, however.

*I have an on-going ringing in my ears that's kind of driving me crazy. It kind of ebbs and flows, interfering with my hearing certain frequencies and makes me very sensitive to sounds; sometimes it's pretty intense and other times, not so much, but for the most part, is always there. Apparently, this is to be expected from the drugs that were pumped into me, and probably from the painkillers that I take throughout the day.

*So now that my mouth is finally feeling better and I can eat more, yesterday, after my shower, I noticed a tremendous amount of beautiful, black hair on the drain in the shower. SO starts the great chemo hair loss! Today, more and more . . . anybody have any great hats they want to loan to me? Jen offered to buzz her own head and donate it to me, our own personal Locks of Love program, sew a long red ponytail into a baseball cap, a la Tony Little, or maybe fashion it into a fine mullet, but I don't think I'd look good as a redhead . . . not sure how much I'll lose/how long this'll last. Like everything else, just wait and see.

*My right leg—specifically my ankle and calf—has caused me pain and discomfort the last few days. Hot, then cold. Dry and itchy and then wet and clammy. Changes of socks, heating pads to warm my tootsies . . . Maybe I've been trying to walk too much and not resting enough? I've felt so good this past week, that maybe I've overdone the walking, being on my feet, and such. Or, maybe I just need a good, old-fashioned pedicure from Jen?

*The most difficult thing for me is that I still can't sit in a chair like a normal human being. Pretty amazing to think of all one does while sitting—working at a desk, drive, sit on a chair in a waiting room, being transported through a large hospital in a wheelchair (can't tell you how many times we've asked hospital/clinic staff if we could get a gurney-type contraption, if I have to walk a long way to an office/room, because I can't sit or walk. And met with the response, "Well, what about a wheelchair!" Ummm . . . what part of "I can't SIT" don't you understand . . .???) I'm working on it, but as of now, just can't quite get there . . . 'Nuff about that!!!

Overall, even with all of the above, I remain in fairly good spirits and feel like I'm getting stronger every day. I actually got out and shoveled for a while when we got those few inches of snow the other day. Felt so good to be outside and actually doing something instead of feeling trapped indoors. Rocco and I play fetch and tug-o-war in the house. Jen signed us up for Netflix again, and we just watched The Hangover the other night. Hilarious movie! HIGHLY recommended, by the way! For a "Dude Flick," even Jen was dying laughing!

. . . along the way, on this journey, I'm keeping my eyes on the prize and trying to stay focused. I just have to be patient, let some things take their own time and course . . .

Well, I have hit that brick wall for the evening. My leg/foot has really been acting up tonight, and is interfering with my writing this post, but I wanted to touch base, and I promise to post again when I know more about my next few weeks. PLEASE keep in touch! It helps me get through the day, looking at my phone and seeing a new message or e-mail. You are NOT bothering me, I promise!

My love to all!
Bob A.

The kindness of family, friends, strangers . . .

Bob came upstairs this morning and asked me, "What the hell? Did you just give up at the end of the last blog post? It was like you suddenly, in the middle of it, said, 'Well, I'm tired. 'Nite everyone!' and went to bed. No winding down, no closure, no nothin'!" I started laughing because that is exactly what happened, but it was that obvious? I thought I disguised it a little better than that . . . he said I owed you. He should know better than to give me permission like that. . .

Gets to the point some nights, when I slam into the proverbial brick wall; eyes get all cross-eyed, mind goes haywire, nothing makes sense, talking in loop-de-loops, fingers don't work, typos abound, and I just have to end it. I have so much to say, but sometimes it takes forever to get it all out, then I start thinking, when is too much information really too much information? How much to people really need/want to know about all this? How much does Bob really want me blabbering on and on about all this? Just wrap it up, Jen! Maybe I just need to keep it simple, just report on the basics: how he's doing, what's changed in his condition, if anything, what's coming up on the docket . . . it would make it a lot easier on everyone reading this inane drivel, that's fer sher . . . well, until I get that prescription for Ritalin, you're gonna get the drivel. Sorry, peeps.

This past week has been a whole lotta nothing, really, and I just didn't have much to write about, as far as what's going on with Bob, his treatment, etc., hence the abrupt ending to that last post. I mean, I have lots to say, always do even when I say I don't, but felt kind of bound up, literally, last night. Well, not literally, I mean, wasn't bound up that way, but literally, as in . . . ummmm, nevermind . . . . I've got a whole bunch of half-started blog postings that I just don't finish, because they're rants and raves, they're Debbie Downers, pity parties, party poopers. Once I step back from them and re-read them, I think, "Good lord. This is TMI. If people don't think I'm nuts already, this'll solidify the suspicions . . ." Then, I have to come up with something a little less harsh, a bit more palatable for the viewing audience, and by then, my eyeballs and typing fingers are screamin' uncle. But, just for fun, I'll give you a little taste of what I sometimes wallow in . . . indulge me in this one little pity party, then that'll be it. I promise.

Right now, I'm sitting on hold for what seems like a god-forsaken eternity, with our mortgage company. Yes, multitasking again. There's some kind of hardship program that we can apply for, to get a reduction in our mortgage payments temporarily, we've been told. Don't know if we'll actually need it, but why wait till things are beyond help, right? Let's be real: Bob hasn't worked in almost three months, and right now, we don't know when he'll go back. I've spent hours already, gathering information, facts and figures, putting it all together to prove to the powers that be that we're experiencing a real hardship and need a little help over here, please! Been a great time, I'm tellin' ya, as numbers and I have never been good friends. Not even casual acquaintances. For good measure, I've composed a passionate little paragraph in the tiny text box on the online form, sharing additional information, in 1800 characters or less, that will hopefully tug at the heartstrings of the person (is there even a real person?) reading it on the other end . . . I always did better on essays than fill-in-the-blank tests, and am crossing my fingers that this skill comes through for me again . . .

BUT, dammit all to hell—the stupid online form won't accept any of my information—keeps deleting everything as I try to proceed, and I have to re-enter everything. {{{big sigh}}} Again. I've been at this all morning, since about 7:30. It's now 11:28. I started the form a few days ago, when we learned about the program. Poor Rocco, just wants to play tug-o-war, and I keep pushing him away. I'll get you on a walk in just a bit, I tell him. The Great Online Form Wizard tells me that the numbers I've plugged in are just fine, but I must correct the highlighted box below. Which is the text box where I poured my heart out about Bob's condition. The instructions above the box say that only letters, numbers, symbols and spaces are accepted in the box. Seriously. W. T. F. (My in-laws, I'm sure, have finally discovered, via this blog, that Bob married a truck driver . . .)

Thus, the call to the 800 number on the website, which leads to a long and winding road through Dante's voicemail hell . . . press one for this, two for that, three for this . . . you need to call this number for this situation, that number for that, transfer to this person, now over to that one . . . soon, some unsuspecting phone operator is going to bear the wrath of my foul mood and mouth . . .

SOOOOOO. All this waiting and pressing numbers and repeating the story over and over leads me to a representative who basically tells me I'm being a little too proactive on our end. They really can't help us until we're, well, more destitute. Bob was still on the payroll for several weeks while all this started happening, all our bills are paid up, we have a little chunk in savings, so on paper, looks like we're sitting pretty. What's the problem? Well, the problem is, Bob hasn't actually worked for almost three months and we don't know when he'll be able to work again . . . his salary was the bulk of our income, but the rep at CitiMortgage tells me that only when Bob applies for Social Security and gets an award letter (an award letter, as though it's a prize) saying he's really, truly disabled and is not able to bring in the income he once was, then they can tell us for certain if we qualify for their hardship program.

The catch-22 on Social Security's end is that Bob needs to get an authorized letter from his oncologist that says it's likely he'll be unable to work for at least a year due to his condition. Then Social Security may kick in. Then the CitiMortgage program may kick in. And then we're told by many people to just expect Social Security to decline his initial application, which means he has to appeal, do it all over again, waste more time, use up more precious resources . . . does anyone else see the screwed up system in place here, or is it just me? Once again, reactive, reactive, reactive. Like everything we've seen thus far. The novel idea of being proactive, to head things off at the pass before they turn into insurmountable problems, just ain't embraced by anyone, it seems.

Can someone please tell me that I have this all wrong—that social security and mortgage hardship programs and everything else are in place to help prevent families from going bankrupt, from losing homes, from depleting everything they've worked so hard for? Please don't tell me these programs don't kick in until after all that happens? If that's the case, then I'm telling all of you: DO NOT GET SERIOUSLY ILL. EVER. And, DO NOT MAKE ANY MONEY. OR SAVE. EVER. You will be punished for your foresight. My public service announcement for the day. You're welcome.

This is the stuff that can keep me up at nights, if I'd allow it. That, among other things. But maybe we've been through enough to finally know that worrying about something I don't truly know the answer to is useless. It's okay to freak a bit as it's occurring, but gotta try to maintain a grip on reality and keep in all in perspective. Thanks for letting me vent. Now, time to move on. You just gotta.

So, the other night, I went over to a friend's house for dinner. There's a group of five of us who try to get together once a month, rotating who hosts every time. It was Tammy's turn this month, and she surprised us by serving up a hearty Thanksgiving dinner. She missed the holiday this year with her own family, but the lovely irony was not lost on me—I am so grateful for friends, family, neighbors, co-workers, people near and far and everything everyone is doing to help us get through Bob's ordeal, and how fitting to have a Thanksgiving dinner right about now. If only he were able to enjoy some of the leftovers . . .

At the dinner table, my friends presented me with a $100 Rainbow foods gift card and a case of Ensure. Vanilla—Bob's favorite! As I started getting all weepy, they said, "Shut up!" (Yes, they're a sentimental bunch.) "We're doing this for you because we know we'd be doing the same thing if we were in your shoes. It's hard to ask for help—it's weird, it's awkward and sometimes you just don't know what you need, so we just decided to go ahead and do something, without your permission." I sat there, blessed, grateful. I know times are not easy for anyone these days. They have their own bills to pay, kids to feed, houses to keep, problems of their own, and no one really has extra bucks to spare. . .

Several times now, my sister, Jillybean, has made the 45 minute drive from her house to ours, bearing goodies such as wild salmon (that her husband, Jade, caught on an Alaskan fishing trip), funky soups and other concoctions. Her latest was Rockin' Moroccan couscous, which did just that—rock! I loved it, Bob couldn't eat it, as his mouth was still giving him trouble, but I was able to make several meals for myself with it. My friend, Kathy, came to the salon with a bag of home cooked goodies in tow. The case of wine from his colleagues (for me, not him), sweet little envelopes arrive in the mail, with chocolate, recipes, more prayers. . . Bob's parents are available at the drop of a hat, to come up and help get him to and from appointments. I have countless other people on stand-by in case Penny and Jim can't get here. I get phone calls, e-mails, messages from people near and far, letting us know they're here for us, just say the word. And in the meantime, they're praying for Bob and a speedy recovery . . .

Asking for help is one of the hardest things for anyone to do in a crisis. Heck even without a crisis, it can be difficult. You don't want to be a burden, you think you can do this all yourself, it really isn't that bad, others have it so much worse . . . We don't have kids, don't have that added stress, but when one member of the marriage is for all practical purposes, disabled, it does kinda throw a wrench into the system. I've discover just how much that member (name rhymes with Rob) contributed to the household, not just in household tasks or financially, but in so many more ways. We'd be snowshoeing lots this winter. We'd maybe be taking a warm weather vacation soon, and/or a weekend up north. He'd walk the dogs with me. We'd run errands or go out to dinner together. He'd sleep in bed with me . . .

Doesn't help, either, that I have a bad case of Worse Case Scenario Syndrome, this deep-seeded fear that the time I want to start cashing in on all the kind, heart-felt offers from everyone, I'm gonna get shot down. Me: "Hey, Neighbor Joe! Just wondering if you could take Bob to his next chemo treatment, because I have to work—" Neighbor Joe: "Jeeze, Jen. You know I'd love to help out, but today's the '7 1/2 % OFF All You Can Fit In This Sack' sale at Menard's . . . really don't wanna miss that," or . . . Me: "Say, Franny Friend! Would it be possible to bake your Mama's Famous 12 Cheese lasagna? Bob really likes that, and his mouth is better, and he was just talking about it the other night—" Franny Friend: "Jen, you know I'd do anything for you, but this is a really bad week for me—American Idol finals, y'know . . ." Ummm. Yeah. I know. I need therapy.

I can't even begin to wrap my mind around the numbers of people praying for Bob, keeping him in their thoughts, blowing that damn pixie dust in his general direction . . . (my mom said she's grinding pixies into dust for Bob. He liked that visual . . . poor pixies . . .) The people I do know about make me bow my head in gratitude. . . . it boggles the mind knowing there are countless more, that we don't even know . . . It seems like every day, I hear a moving story about a friend of a friend, a colleague of a family member, a neighbor's church member, a prayer group in Michigan, someone, somewhere, who's heard about Bob's story and has jumped into the prayer parade. Bob's Army, as one friend calls it. It humbles me, moves us, and it is that which keeps me going. Those prayers that help balance the anger, the frustrations, the self-pity I feel when dealing with all the other crappy stuff. The crappy stuff just happens. Can't control that. Guess my MO is that I get pissed initially, scared some, sad a little more, a little reactive I guess, especially when, right now, we really don't have a lot of answers to anything. The trick is to not allow the anger, the pity, the fright, to take over, to not lose sight of what really matters in the grand scheme of things. I don't do it by myself, I can tell you that.