F*CK CANCER

Get your stylish, in-your-face cancer cap here at this site. Hurry, before they're gone!

Couple of tough weeks since the heart attack. . .so much has happened, and yet nothing has happened, has been very hard to write, even to keep it short and sweet, even just to fill you all in on the bare minimum . . . I keep wishing, hoping, praying that things will get better, start to turn around for Bob, but everything just seems to be at a standstill. No, not even standstill. More like moving backwards. Through sludge. Thick, heavy, sticky, mucky sludge, that sucks feet into the earth, deeper and deeper, making every step more difficult than the last. . .

Oh, yeah, and you read that right, back there a few sentences ago, I said I'm praying. My prayers are even getting longer lately, they go kinda like this: "Dear God, please . . . " But, that's where I get stuck. Please what? Heal my husband? Shrink his tumor? Give his life back? Let surgery be scheduled soon? All of the above? Pretty please, with sugar on top? And, I promise to clean up the potty mouth, if you do? (Though, I just watched a documentary the other day, Crazy Sexy Cancer, and one of the women featured in it, a self-proclaimed "rock 'n' roll tour manager" who has a rare form of cancer, sells these knit hats with the words, "F*UCK CANCER" emblazoned on them. I'd love to have one, but then that might negate the "no swearing" clause in that prayer . . .oh well)

Seem so absurd, so naive, so fresh-faced Polly-Anna-esque, self-centered, even, to be praying for such a thing. God didn't stop a massive earthquake that gobbled up tens of thousands of people, God didn't stop a horrific fire that raged through a Minneapolis apartment, killing nearly an entire family, God hasn't stopped hundreds, thousands, millions of people from dying horrific deaths every year. . . thinking that God will hear my voice and actually listen to it is almost laughable . . . someone once told me that God always answers our prayers, just not always in the way we want him to. Well, if he doesn't do what I'm asking, then that's not answering my prayers. I have not prayed for Bob to suffer like this, for so long, to have his pain get worse, to succumb to panic attacks, to lose his appetite and several more pounds in the process, but if this is how God is answering my prayers, I don't want to have anything to do with this game. It's cruel, it's wicked, it's God-awful mean. Fuck cancer.

Monday, March 13, 2010

Heavy, heavy heart tonight . . .like lead-brick-sitting-in-my-stomach-making-it-hard-to-breathe kind of heavy . . . been a tough week or so for Bob. Haven't been to the ER for several days, but his pain has increased dramatically over the past few, despite increasing some of his pain meds through a visit to Palliative care last week. Tonight, it's as bad as I've seen since this all began, so I called Palliative Care on-call tonight. Bob said his pain, even after taking meds, is at a level 9 (medical professionals use this 0-10 pain scale, to determine the intensity of pain a patient is experiencing, zero being no pain, 10 being the worst pain possible) and she upped several of his pain meds over the phone as I frantically scribbled her instructions and read them back several times, making triple-sure I got them right. And now, it's a wait-n-see game. If he doesn't feel better in a short while, I'm hauling him into ER and demand he be admitted. Right now, he's sleeping, very soundly, evident by the soft snoring coming from the sofa, so let's hope this continues . . .

Earlier in the day (morning, actually), I called Bob's oncologist's nurse, to let the doctor know that he's been battling constant nausea for the past week, has very little appetite, has lost even more weight (from where it was lost, I can't imagine, as he has nothing left to give), and brought up the pain issue again. The nurse said she'd call Doc S, let him know what's going on and call back. Few minutes later, we're told Doc S wants to see Bob today at 11:30 a.m., instead of Wednesday, as was originally scheduled. At the appointment, we gave him the lowdown on what's been going on since the discharge from the heart attack—he gave us some suggestions—call cardiology about the low blood pressure, call Palliative Care to get some insights on the pain management.

Then, at the end of the appointment, almost as an afterthought, Doc brought up the CT scan that was done last week. . . {{{big sigh}}} I'm not even going to go into it right now, as we don't know anything for sure, but his interpretation of it wasn't the most positive. I felt that old familiar throbbing at the base of my head start up again as Doc S. continued his spiel, the ol' brain swirling like a blender on puree, whirling up my words so I couldn't even begin to form any intelligent questions in response. But the basic gist of it is, he's not jumping to any conclusions till we meet with the surgeon on Wednesday, who will tell us the game plan for the surgery—the if's, when's, what's, how's and everything else we can get from him regarding the surgery. "One day at a time," Doc S. said . . . Fuck cancer . . .

So, back to tonight. . . decided to sleep in the living room with Bob, to keep an eye and ear on him, make sure the pain meds were doing the job. If not, I'd be close at hand to hear him. Dogs had gone to bed in their own spots—Gaia in the kitchen, on the cool tile, and Rocco in the bedroom, on the bed, happy as hell to have the whole thing to himself. While lying on the floor, on my makeshift "bed," I had myself a meltdown of epic proportions. Started crying and couldn't stop, which lead to more crying, screaming, pounding pillows and thrashing in my blankets . . . to the point where I think Bob thought he was going to have to call 911 and have me hauled away. To the point where the dogs came into the living room, to see what was up. Gaia took her stoic post near the patio doors, Rocco came to my side and started licking my snotty nose and teary eyes, then pressed up against me as close as he could get . . .

Poor Bob. Last thing he needs is a wife folding like a $3 suitcase when the going gets tough. He doesn't need this from me, he needs to trade in this "advocate" for someone stronger, someone who doesn't break so easily, who doesn't crumble like a cookie when the going gets tough. I cried throughout the night, on and off, even when I could hear that, finally, for the first time in days, Bob breathing deeply, finally finding sleep. . .I don't know how people get through this, and I'm on the safe side of cancer, the spectator side. I am not experiencing the immeasurable, insuppressible pain, the nausea, the weakness, the never-ending mental fog, the constant physical, emotional, mental reminders that my body has been hijacked, not knowing, even one iota, how all of this this will play out . . . I am just an outsider to all of this, which makes my responses all the more absurd.

Tuesday morning . . .

Woke to a wonderful spring thunderstorm around 4 a.m. Started out with soft rumblings and soon gave way to a good ol' downpour, accompanied by timpanic thunder, paparazzi lightning. Dogs started acting like freaks, Gaia pacing from room to room, Rocco following suit, not really knowing why, I'm sure, except that his center of the universe was acting like a brainless twit and, well, Monkey See, Monkey Do. Gaia finally bounded down to the basement, I followed. She went to the patio door, so I let her out, Rocco followed, into the thundering darkness pierced by intermittent flashes of light. She went around to the side of the house, under the deck above our bedroom and lay down. Not sure where Rocco went—maybe under the lower deck? Can't figure that one out—being so scared of thunderstorms that she has to go out into it. Aversion therapy, perhaps? Somehow, I'm feeling a life metaphor being expressed here, but can't quite grasp it . . .

Bob got some really good sleep last night, and he said the pain in his leg has decreased considerably. Living well through pharmaceuticals . . . I couldn't sleep after the dramatic dog scene, so got up to write. Heart is still heavy, eyes are sore and puffy, but Bob is sleeping soundly, his breathing soft and rhythmic. Fuck cancer. . .

Need to end this on a positive note—here's a pic of hyacinths growing in "my" front garden (I say "my" because I didn't plant them, remnants of the previous owners of our house). They are so fragrant—I was hanging laundry outside the other day and kept smelling this divine perfume. The lilacs aren't in bloom yet, no other fruit trees or anything close by. Then I looked down at the hyacinths. I walked over to them and knelt down beside them and breathed in deep. Yep, the hyacinths.

The storm is passing, now just a distant rumbling toward the east. Black night sky has given way to gray muted light. The trees in the yard are saturated in color—charcoal black trunks scratched against the grey canvas, I swear the yellow-green leaves are even bigger and more brilliant than they were yesterday . . . another metaphor that I can't quite decipher . . . fuck cancer . . .

Next on the Agenda . . .

Last time we left our SuperHero, SpongeBob SweatPants (I'll probably get sued for copyright infringement for using that picture), he had just been discharged from ER last Saturday. Easter would come and go, like any other day—another holiday Bob wouldn't able to partake in—or, so we thought! My sister, Jill, her husband, Jade, Miss Amelia (their adorable 4 year old) and my mom showed up at our door with Easter Dinner in a Bag (aka Meals on Wheels)! My mom and Jill spent the morning making a ham dinner with all the trimmings and brought it out to us. Oh, and they included salmon and halibut steaks for Bob, in compliance with his low sodium diet! We even got Easter baskets, with bubbles, a pinwheel, candy-filled eggs . . . short but sweet visit, a lovely day, indeed.

These next few weeks are a flurry of appointments for Bob: had one on Monday (a follow-up with oncology, after the last chemo treatment, and to line up subsequent appointments with various departments), Tuesday was an "off" day, then Wednesday brought an unexpected trip to ER again, because Bob's been battling an ongoing bout of nausea, feeling light-headed, dizzy, weakness—a call to the triage nurse gave us instructions to take him in, because he may be dehydrated and would need to get IV fluids immediately, to avoid further issues, (like what had happened back in Feb, when his electrolytes became so out of whack) . . . the blood pressure meds make his blood pressure very low, which is the intention, but too low and it impairs mental and physical functions. IV fluids were administered, blood work was done, a few hours hanging out at the ER Cantina and then he was released . . . Penny and Jim have been staying with us again, as I have to work all week. With Bob's condition still being quite fragile, we all agreed it was best to have someone with him at all times. As such, they brought him into ER and then home again, so I didn't have to reschedule a whole day of appointments; they kept me posted on his progress throughout the stay.

This pic was taken in the exam room while waiting for the oncology nurse to arrive for Bob's

appointment this past Monday. It's a supply cabinet, with lots of drawers filled with lots of fun stuff, things that make you go, "hmmm. . . " Bob wondered aloud, "I wonder if they use all those things for every exam . . ." I said, "Only if you're lucky," then, "I need to take a picture of this, for the blog!" Love the thought that someone actually had to physically type a label for the contents of the cabinet . . . {{{{BIG sigh}}}} . . . someday, peeps, I'll grow up . . .

On with the social engagement calendar: Bob had his CT scan today, cardiology follow-up appointment tomorrow (Friday), has the weekend off, and next week starts another collection of appointments. He'll meet with Doc S, his main oncology doctor, to review the CT results and also finally have his surgeon's consultation. With each appointment, we'll have more pieces to the puzzle to complete the picture of treatment, being the whole thing was all scrambled up with the heart attack incident.

Many, many trips back and forth to the U these past few weeks . . . We met with our realtor again yesterday, and are revisiting the idea of putting the house back on the market. After this last medical emergency (the heart attack) and ER trips, I am more than a little freaked out about living so far away from medical care, from family and friends . . . 20 minutes for an ambulance to arrive at our house last Saturday (thank god that wasn't a critical event . . .) has really got me thinking . . . Maybe it's a bad time to sell (is any time a good time in this market?), we'll find out, but I want so badly to simplify our lives in any way possible. . . in my mind, living in the city again would make everything so much easier, from getting Bob to and from doctor's appointments, to simply getting groceries and making Target and pharmacy runs. Then again, maybe I'm just desperately trying to find a way to gain the upper hand on something that is completely, utterly out of my control . . . so anyhow, if you know anyone who's interested in living in a super-adorable walk-out rambler with 2 1/2 acres of park-like woods, send 'em our way . . .

(the pic above is Bob resting on the exam table before the anal scope . . . OH, JUST KIDDING!!! He's just resting . . . take it where you can get it . . .)

Married to a SuperHero . . .

(the photo to the left is a work of art on 7D at the U of M, entitled 100 Firecrackers . . .we counted 'em—there's only 98 . . .)

It ain't easy, being married to a SuperHero, I'm tellin' ya . . . I'm beginning to think I'm not just sorely, but pathetically, under-qualified for the job. I mean, ironing the capes, polishing the bullet-deflecting cuffs, hand-washing (in cold water, of course, with Woolite) the tights, the death-defying acts . . .

I don't even know how to begin to explain the events of the past week, or how we've segued into life back at home, as though the heart attack on Sunday was just another day in the life . . . of Bob. Back home, with a bunch of new-old meds (Plavix, lisinopril, Coreg, full aspirin instead of just a baby aspirin—stuff he took when he had his first heart attack three years ago) to add to the Rx collection, a humongous bruise on his left hip and Band-Aids on his neck (from the pacemaker and Swan catheter) . . . Rock 'n' roll, life goes on . . .

I had to work the rest of the week, which made me sick to my stomach, leaving Bob for so long every day, even though his parents would be with him throughout the day. I'd drive to the U in the morning, before work, to say "hi" to Bob, and again, after work, to kiss him goodnight. (Bob even got a surprise visit while he was in cardiac rehab, from an "old" but good friend and his wife, who were in town for a short time!) But once I got to work, I found it was easier being there and being so busy with clients rather than fretting and pacing and sitting around at the U all day, not able to do anything useful. Nancy and Brian and the girls stayed till Wednesday, were finally able to see and talk to Bob, conscious and alert and sans most tubes/lines/catheters, which was a huge relief, then had to take off for the long drive to Des Moines, for Brian's dad's funeral, which was on Thursday, followed by a long drive back to Billings.

After Bob was discharged on Thursday, Penny and Jim stayed with Bob until Friday evening, when I got home from work. Made me feel so much better about having to go to work, knowing Bob would be in good care under their watchful eye. When I got home, I saw that P & J had raked the front yard, cleared the rock garden of winter debris, taken the recycling out to the road, and dinner was just getting done as I walked in the door (lasagna brought over by very kind neighbors). Earlier in the week, Jim had put up a new mailbox for us (to replace the one Bob had backed into last year. Yes, Bob backed into it, not me). I am not kidding when I say P&J can stay with us as long as they want.

Bob hadn't been home but a few days when we decided to take another little trip to ER this

morning. Bob woke me around 6 a.m.; his heart was racing, he was restless and full of anxiety, no chest pains or any other physical symptoms, but he'd taken his blood pressure and found it was 187/112. No question about it, I said I was calling 911 and picked up the phone. I was connected almost immediately, and told the dispatcher what was going on; that Bob had just had a heart attack on Sunday, was discharged Thursday, and was now feeling restless, anxious and had ridiculously high blood pressure reading. The dispatcher asked me a few more questions, then said an ambulance and sheriff would be arriving shortly. She asked if I wanted to keep her on the line till they arrived, I didn't think that was necessary, that I'd call if I needed.

As we waited for the paramedics to arrive, I kept asking Bob how he was doing, all the while picking up the house, sticking dishes in the dishwasher . . . keep busy, keep busy, keep busy . . .I kept looking at the clock. 8 minutes passed. 12 minutes passed. 18 minutes . . . at least 20 minutes went by when I finally saw headlights illuminate the driveway, a red beacon swirling in the darkness. Thank god the siren wasn't wailing. I met the paramedics at the door, lead them to Bob and stood back and watched as they hooked Bob up to a mobile EKG machine, and asked him questions. A few minutes went by, then one of the medics said it didn't appear that Bob was having another heart attack, but given what he's been through the past week, asked if he wanted to go in to the hospital, just to be safe. Bob looked at me and I said absolutely. At this stage, no taking chances. I said I'd follow in the car, and after putting the dogs in the house, I hopped in the car and sped down 94, to the U.

I found Bob in a room, already hooked up to an IV, with a technician attaching electrodes to his chest, arms and legs, then clipping wires to the electrodes, like tiny jumper cables, to get another EKG reading. The goal, we're told, is to check the heart, check his blood levels, see if things have changed dramatically since being discharged. One of the tending nurses watched Bob as he changed into a hospital gown and exclaimed, "You're amanciated! You could certainly stand to gain a few pounds!" I'm still not sure if she meant Bob was wasting away or if he was free! from legal, political and/or social restrictions . . . six of one, twelve dozen of another*, I guess . . .

We were at the U from about 6:45 a.m., till nearly 1 p.m. Lots of blood drawn, another EKG, then an echocardiogram then more meds. Conclusion is that there has been no changes in Bob's condition since being discharged (they compared their results to the cardiology records from from earlier in the week). Echo shows no signs of any thing amiss and the blood labs came back with nothing out of whack. What Bob experienced was likely an anxiety attack, but we were told it was good to be safe than sorry, especially considering how "fresh" the heart attack was, and that some of his symptoms are symptoms of heart problems. Around 1 p.m., Bob was unhooked from the IV's, the electrodes and was free to go.

To say we have a lot of unanswered questions in this great big drama is a pathetic understatement. It would take a whole 'nuther blog to address all the concerns, all the questions, all the "what if's" and "if only's" . . . right now, we're trying to look at this as just another roadblock on the journey. One more reminder that this big ol' C word doesn't play by the rules, doesn't follow our plans, our lead, but makes us even more determined to outsmart it, to get ahead of the game, be even more proactive, more involved . . .

If there's one thing that's becoming more and more clear, it's that Bob is definitely a poster boy for adverse effects of childhood cancer treatments. We talked about that last night, that maybe there could be some good out of this, that he be an advocate for cancer survivors . . . I gotta believe that he's a disturbing anomaly, even in the world of cancer. Childhood cancer survivor, heart attack survivor, now secondary cancer patient and second heart attack survivor. All inextricably related to the radiation he had way back when . . . the information is out there. It is no secret that cancer survivors, particularly ones who've had radiation treatment, have a higher incident of heart issues, secondary cancers. The thing is, the people who need to know this the most are the people who aren't getting this information: primary physicians. Back surgeons. Practitioners who don't deal with cancer survivors on a daily basis. Which means patients aren't being told all the information they need to make the best decisions they can about their own health care. . .reactive, reactive reactive effed-up system . . .

Well, off to iron a few capes. Till next time . . .

*I should probably explain that one, lest someone think I'm a big ol' dork, which I am, but don't need to underscore the fact . . . I used to work with Queen of the Malaprop, a woman who'd constantly butcher familiar words and phrases. "Six of one, 12 dozen of another" was one of her favorites . . .

Quick update . . .

Bob has been recovering remarkably; all his vitals are strong, stable. He was kept in cardiac ICU last night, only because no rooms were available in the "regular" hospital, which is where they were going to move him to yesterday. He didn't mind, as he has his own room (no freaky roommates to deal with), it's quiet, and the nurses pop in lickity-split when he calls them (not that they didn't before, but in ICU, they're lightening-speed). We're told that, for now, he'll be back in the primary care of oncology, since his heart is stable, recovering well, and that his cancer treatments take precedence again.

From what I understand, a whole new game plan needs to be devised; he was to have one more stint of the in-patient methotrexate, but his oncologist told me they wouldn't be doing that, that one more treatment, in the grand scheme of things, won't have that big an effect. . . Surgery was supposed to happen on the 19th of April, but that'll be rescheduled, too. Guess it sounds like all kinds of people need to reconvene and re-plan his course of treatment. I have no idea what will happen from here on out . . .

I went to the hospital for a few hours yesterday morning, then to work all day, then back to the hospital to say "good night" to Bob. Nice, quiet evening. He looks good. Handsome, as always, even with wispy hair and tired eyes. Other than an IV tube and the glowing red "ET" light on his finger, no other tubes remain in him. Now that I think about it, I think even the PICC line was removed . . .He has a HUGE bruise on the upper left side of his groin, where they'd inserted the balloon pump, the insertion site that wouldn't quit bleeding . . . when he saw that, he was like, "What the hell is that from?!?" Oh, just another tube that was shoved into you, to keep you alive . . .

I have a lighter work day today; I had taken half the day off, to take Bob to the surgeon consultation, which won't be happening. Nancy, Brian and the girls will stop by the hospital to see Bob again, then head toward Iowa later today, to go to Brian's dad's funeral tomorrow. Rocco will be so sad to see his new bff go . . . Jim and Penny will probably stay until Bob is discharged, not sure when that'll be—tomorrow? Friday?

Not feeling especially creative now, just wanted to give a quick update on my superhero.

FIRST ITEM ON THE AGENDA: BOB IS VERY MUCH ALIVE!!!!

Got a rather disturbing e-mail from a good friend of Bob's this afternoon, which prompted an immediate phone call, to reassure this friend of a number of things, most important being: BOB IS NOT DEAD. Good lord, that sounds like a twisted take on the ol' Paul McCartney hoax . . . For the love of all things good, I have no idea how this poor guy got the message that Bob had died, but hopefully it hasn't spread far, and that Bob's friend has been setting the record straight. Bob is very much alive, thank you very much, so please pass that one thing on to anyone and everyone, if you do nothing else today. He has beat the odds, once again, and if there ever was a doubt in my mind before about how this big, crazy story will all play out, it is gone. Seeing the events of the past 24+ hours has made me a believer. In Bob. He will beat this. He will be well again. Amen.

When I got to the hospital this morning, the nurse told me they were in the process of extubating Bob; e.g., removing the breathing tube. His lungs were working great, his heart rate and blood pressure were very strong, and he was really, really anxious to get that damn vent out so he could talk again. Hell, to just breathe and swallow unencumbered again. I should also mention that at no point was the ventilator doing the breathing for Bob; it had been inserted for precautionary measures, should Bob's lungs become compromised in any way during or after the heart attack.

I arrived in his room just before 9 this morning, as he was in that half-way land between sedation and consciousness. To get the tube out, the technicians needed Bob to be alert enough to be able to follow their direction, but sedated enough to not put up a big fight; when I arrived, they were beginning to prep him for the extubation. He knew who I was, and again tried communicating with me. Bob's dad entered the room shortly after I did, and it was clear that having us there was irritating the hell out of Bob, he was trying to talk to us, communicate in some way, but was just making things worse, so we left the room, reassuring him we'd be back as soon as the vent was out. He appeared to understand. Maybe an hour or so later, I went back and peeked into his room. Bob was lying on his back, sans breathing tube. His nurse beckoned me to enter and I went to his side. His eyes were still very puffy and coated in crusty goo (oxymoron, I know, but that's what it was), but his voice was stronger and clearer than I expected. He asked me what had happened, where was he. He didn't know, or didn't remember, that he'd had a heart attack, that he was in ICU.

For the first several minutes, all I could do was hold his hand, stare at him. Deja vu, all over again. . . I tried to summarize the past 24 hours as best I could, trying not to overload him with details, just feeding him bits and pieces as the minutes and hours went by. Over the course of the day, he became more and more cognizant, stronger and more lucid and was able to start piecing together what had happened, from his own memory, from what the medical team has shared, and from what we were telling him. He remembers feeling chest pain while on 7D, during his chemo—he thought it was Saturday night; I was told it was between 4 and 5 a.m. Sunday—calling his nurse in because he just knew something was not right, then his nurse calling for help and a swarm of people in his room. Then, he woke up. Today. He thought it was Sunday. It's probably a good thing he doesn't remember yesterday. He asked when I was called, what happened when we got to the hospital, whom I've spoken with. I could tell he was in immense pain; he winced and grimaced constantly as we talked. I was told that, because of his precarious condition, they were unable to give him any of his pain medications, so they got far behind in treating his pain. The main goal of the day was to get back on top of the pain and control it from here on out.

Bob's parents and Nancy were all at the hospital throughout the day; Brian and Claire and Grace arrived later in the afternoon. We took turns popping in to see him, to squeeze his hand, wipe the crud from his eyes, give him a kiss. Each time I went in his room, he seemed visibly stronger, more clear-headed, but still very much wiped out and baffled by the events of the past few days. My mom popped in for a visit in the afternoon, and later, after everyone else had left, Jill and Amelia stopped by for a Bob Sighting. Amelia brought Bob a pink Easter egg with a York Peppermint Patty in it. He accepted her treat gratefully.

I spoke with many doctors; Palliative Care team was in to get the pain back under control. The ICU team is also continuing with the flushing of the methotrexate from Bob's body, which, according to the oncologists on staff, is progressing right on schedule. I called his primary oncologist, who was gone for the week—his nurse said she'd try to contact him, as they were unaware of the weekend's event—he eventually called back, and I relayed the past 24 hours of Bob's life to him. I spoke with several cardiologists, with the nurses, anyone who is tending him, anyone who would listen to me, and am repeating my mantra: why, why, why, given Bob's health history, has cardiology not been part of Bob's care team from day one, even though we've stressed the very important details and concerns of his heart history and the effects chemo can have on even a healthy heart. I took the lead of the doctors; I trusted that they knew what they were doing, based on Bob's history, as well as his present condition. Always, I'm met with blank stares and lots of hemming and hawing . . .

No one can give me a clear reason as to why the heart attack happened. Maybe there is none. Maybe I'm asking for the impossible. Asking a question to which there is no answer. But I have demanded that, from here on out, cardiology be side-by-side with oncology, as far as Bob's treatment is concerned. Every step of the way. Why that wasn't the case from the beginning is unclear to me; we asked often, given Bob's history, but so far, no one has offered even an inkling of a reason; maybe it's not standard protocol? Maybe it's just so rare a reaction that there isn't enough occurrences to warrant a "protocol?" What else should we have done, could we have done, to do to make his doctors aware of his heart issues, to stand up and take notice? Maybe this was unpreventable, that nothing, no one, could have predicted this, that no medication could have thwarted it, no test could have picked up on a clue . . . Maybe what I'm asking is the result of that crystal clear 20/20 hindsight, but right now, all I see is such a damned reactive system, that if only someone had truly listed to us, and put a few precautionary measures into place . . . and am left wondering why do I feel like we have to be the ones calling the shots? Like I simply cannot trust that the doctors will do what's best for Bob? That we cannot rest, cannot lay down our guard in this battle, for even a moment . . . Wallowing in shoulda, woulda, coulda land again . . . all the while, being ever grateful that Bob is the fighter he is . . .and there I go, thinking again. I just need to stop that. Maybe when I'm at the U tomorrow, I'll ask if they can give me something, some medication for that ailment . . .

So much more happened over the course of the day, I'm having trouble separating and lining up much of it, into a neat, coherent story. All the details blend and swirl together, I'm having trouble extracting them from each other. But I know for certain I did sit with Bob today and watch him eat lunch—a PB&J sandwich and raspberry sherbet, then dinner—chicken nuggets, tapioca pudding and a Coke. Together, we sat, piecing the events of the day, like a crazy quilt. I've told him about all the people praying for him, rooting for him, pulling for him. It's astounding, the messages we're getting, from near and far. Keep it coming, peeps. We're feeling the love, we're feeling the love.

Oh, and before I forget (though I know I've forgotten many details already): new course in treatment. Sounds like no more chemo before surgery. Right now, Bob's heart takes priority. The goal is to get him over this rather large bump in the road, then address surgery when the docs deem him strong enough to handle the stress and demands of it, which will probably be pushed back a few weeks.

Oh, and in case I didn't mention it yet, BOB IS VERY MUCH ALIVE. VERY much alive.

Peace, love and raspberry sherbet.

Update . . .

God, I don't even know where to start here, my mind is mud, I'm trying to process the events of the day, to keep you all up to date, but even more so, to try to process everything that happened today, for my own sake . . . my heart hurts so bad, but not as bad as Bob's, so I'll give it the ol' college try here. . .

I was jolted out of bed this morning by a phone call around 6:30 a.m. from the U. When I saw the U of MN on caller ID, for a nanosecond I thought (hoped?) it was Bob calling from his room phone, but in the next nanosecond, even before I answered the call, I knew in my heart that wasn't true. It was a doctor, asking my permission to resuscitate Bob because he's full code and is having a heart attack and I'm the next of kin and he is unable to make the decision himself and to take a deep breath and it's okay to cry but they really need my permission before they can do anything and that's about when my mind turned to mud and I said, "I don't know what any of that means, but yes, you have my permission, to do whatever you just asked me, to help him" followed by lots of crying and trying to keep everything they're telling me straight and wondering how the hell this could possibly be happening and in that same instant suddenly hating all the people who have told me that God doesn't give you anything you can't handle and that everything happens for a reason and that God always answers our prayers but not always the way we want him to . . . because my husband has had more shit handed to him in his life than anyone will ever come close to dealing with and enough is fucking enough already and there is absofuckinglutely no reason for any of this, but maybe that last one is true, that maybe this is how God is answering my prayers because this is certainly not, not not at ALL what I have been praying for . . . then, I'm crying, and the darkened upstairs is suddenly filled with shadows of bodies and wailing, light snap on—someone is hugging me, I'm hugging Penny as tight as I can, I see little Claire and Gracie standing among the crying and wailing grownups and I feel so bad for them, with all the sadness they've seen in such a short time, their Grandpa, and now Uncle Bob . . . I think I'm telling everyone what I was just told, trying to figure out what the hell I'm supposed to do next, feed dogs, brush teeth, get dressed, tell the others I'm heading into the U, hop in the Jeep and head down 94.

I find myself at the U maybe 45 minutes, hour at the most, after the phone call, takes a half hour to get to the U, whether I speed or not. . . Bob's parents and Nancy meet me, not long after I arrive, in the Gold room where Bob was just the day before, waiting for his PICC line. We're met by a nurse named Betsy, who gave us the lowdown: around 4:30 a.m. or so, Bob called his nurse, complaining about chest pains, and a flurry of activity ensued: low heart rate and high blood pressure (did I get that right?) indicated something was not right, an EKG and other tests confirmed he was having a heart attack, and was whisked down to the cardiac cath lab. The same artery that was blocked 3 years ago, his right coronary artery, was blocked again, this time clogged by a humongous blood clot. Two stents were put in to re-open the artery, but later, the surgeon told us that another blockage was found in his left coronary artery, but they won't be treating that right now, that they have to stabilize him and treat the right side first. Somewhere, in there, my mom and sister, Gretchen, arrived, for added support. . .

Bob is now in the Cardiac ICU, intubated, with more tubes and lines coming from his body that I've seen in a long time, but at the same time, two too many times. The vent, as the pacemaker, are precautionary measures. They were inserted while Bob was still conscious, in the event things should get even worse. We're told it's really hard to insert a breathing tube when the patient has lost consciousness, so they erred on the side of caution and did it while he was still alert. He also had a balloon pump inserted; the nurse described it as like one of those long balloons that people twist into animal shapes, inserted into his body via a catheter. Its job is to increase blood flow to the heart and body, while decreasing the workload of the heart, controlling the heart rate and blood pressure, thus allowing the heart to recover from the heart attack.

So, we spent all day at the U, waiting, waiting, waiting. Bob was kept under heavy sedation all day, for of a number of reasons. First, was to stabilize his heart, his blood pressure, etc., to let things recover after the heart attack and the subsequent stents placed in the artery. The cardiologist said, "You know, he's not a big guy, but boy, even in his state, he put up a fight—we really had to knock him out good to get the vent in. When you go in to see him, you'll see that his hands are strapped to the bed. That's for his own good, so he doesn't pull anything out. Even heavily sedated, he's pretty ticked off about all of this . . ." That's my Bobby . . . always a fighter. My hero.

We took turns peeking in on him in the ICU. Heavily sedated, he could not talk to us, but at times, responded, eyes closed but with head nods or shakes, sometimes it seemed like his mouth was moving, trying to form words around the tube inserted in it, in an effort to speak. Other times, he seemed to be trying to tell me things with his hands, his fingers slowly tracing figures on the bed sheet, then dropping down, as though in exasperation when I couldn't decipher his message. He did that same thing back at United, three years ago, when he had his first heart attack, and was intubated and in an induced coma. I have to take that as a good sign, that even heavy sedation can't keep Bob from trying to take charge. . .

Then the catheter site (where the balloon pump was inserted) wouldn't stop bleeding (we were told this is very common, because of the massive amount of blood thinners give while treating the heart attack). For over five hours straight, constant physical pressure was being applied to his femoral artery, in his groin, and I could tell, even though he was unconscious, that pissed him off, too; his hand kept trying to move toward the catheter site, and the tending nurse had to keep redirecting his hand, while at the same time keep pressure on the bleeding site. Finally, the cardiologist came back and made the executive decision to remove the balloon pump; they turned it off for a while and decided that Bob's blood pressure and other vitals were actually very strong without the pump, so the hassle of trying to stop the bleeding wasn't worth the effort of keeping the pump in place.

While we're playing the Waiting Game during the afternoon, we get a call from Brian. His dad, in Iowa, has passed away. Brian had stayed back at the house, with the girls and the dogs. . . my heart cries for him and his family, too. Even though his dad has been in ill health a long time, it's still hard. So hard. . .

Finally, we get to a point, where the cardiologist tells us they won't be doing anything more to Bob the rest of the day, into the night. Bob's making a turn in the right direction, he tells us. Vitals are stable, heart rate and blood pressure look great . . .they plan to take the breathing tube out in the morning, and go from there. So, in essence, there's nothing more for us to do by waiting around the hospital.

So, we all head home. I take Gaia on a walk in the back yard, then feed the dogs. We have dinner in near silence, till the girls start telling us about the stories they're writing, and Claire announces she needs a name for the centaur in her fantasy tale, so we all start tossing out names, and I open a bottle of Woop Woop shiraz, and Nancy says "Woop Woop" would be a great name for a centaur, because "woop woop" means somewhere in the middle of nowhere, an Australian colloquialism, as in, "Just been to Woop Woop and back," and Penny says, "That sounds like what I feel like tonight . . ." and we all agree with her.

I don't know why Bob had a heart attack this morning. No one could really give me any concrete answers. I will just have to wait for the next hours and days to unfold. And, just for the record, I am not mad at God. The more this goes on, the more I think God really has nothing to do with any of this. Cause and effect, I mean. He didn't cause this, he won't fix it. That's not his job. It's just life happening, as anyone experiences. It doesn't matter how much I pray, how much I beg, barter, cry, threaten, scream, holler, whimper. Nothing really works. Nothing. Things will happen the way they're going to happen, regardless. I'm kind of giving up, kind of losing steam, as far as that direction goes, I mean. Need to find a new focus, new purpose . . .

I guess instead of praying to God, I'm going to send my prayers directly out to friends, family, whomever, because the way I'm seeing it, you all are stepping up to the plate and going to bat for us. Maybe that's how God is working for me. Through you. I don't know. I'm trying to find that freakin' reason this is happening, and I'm coming up empty. I wish I could take everyone up on the offers of "whatever you need . . ." I know you all mean it. With your hearts. I just don't know if you can give me what I really need right now, and that's to have my Bob home with me. Healthy, whole. And done with all of this shit. now. Uncle already. But I've said it before, a few years ago, I don't decide these things. No one does. I certainly love all the prayers, kind thoughts, messages on the blog, e-mails . . . I love that my mom and sister came to the U. I'm grateful that Brian and Nancy and the girls (and Casper) are here with us, I'm forever grateful for Penny and Jim and all they do for us, I'm in awe of the care Bob is getting at the U . . . I am humbled, again and again, brought to my knees, breathless, with the outpouring of love and support. . . breathless, I tell you.

Time for bed. Long day. I'll probably re-read this all tomorrow and go, "WHAT THE HELL WAS I THINKING!! Why did I write THAT??!! THAT'S not what happened!!!"

Anyhow, g'nite. . . to Woop woop. And back. . .

No Visitors, Please

Quick note to everyone: Bob had a heart attack this morning around 5:30 a.m.; he's stabilized right now but we haven't been able to see him yet. He'll be in cardiac ICU as soon as they get stents in. More later. Please send in the prayer and pixie brigade...


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