Happy Birthday, heres some new gear

Let me jump right in here.

So we (well she, but we”re a team so pardon me for the jumping on the bandwagon) had chemo on Tuesday. Things were looking up. Bilirubin was down to 1.4 (hell yeah). Her platelets were up but that’s nothing terrible. Either way, things were good.   She had chemo. Then on the way home she mentions, yeah, I got Dwayne (the drain tube for those not up to speed) stuck on my jeans and thought I pulled my innards out. Hmmmm, hindsight being 20/20, that’s probably something we should’ve said while we were there. Either way, home. She woke up the next day, went through the day, good color (not like a minion, more like, the shade of a living, breathing human being). She sounded better, walked around cleaning stuff. Then she asked me to flush old Dwayne.

That’s when we hit the vortex. You see, flushing involves screwing in a saline syringe into the drain valve and squeezing it through. Well, I squeezed, and out comes saline out of her side like a squirt gun. I’m no doctor, but I know when something isn’t right. So we called in and they would try to fit us in the next day.

Next day rolls around, they will get us in at 2pm but if she’s hurting, get her in earlier. So we left at noon. However, I guess we picked the busiest day of the year to mess with Dwayne because she was wheeled back around five. In between all this I ate some questionable sushi from the cafe (it was all they had). After wheeling her back I had heard from a little birdie there was a bar across the street at the Courtyard by Marriott. They said the drinks were a little overpriced. After 5 hours inside the temple of doom I didn’t care. I’ve never been so happy to pay $26 for two beers and a glass off wine in my entire life. It could’ve been double and honestly, I wouldn’t have batted an eye. They fixed her up and we went home. She got a new tube and fresh bags (they’re actually an improvement.  I’d say pretty cool but look, its a bag and it sucks however great they make it).  There was a doctor that came by just to say hi and see how she was doing  It’s a little disconcerting when the theme song from cheers comes on whenever you enter Mayo South 2 and the nurses scream your name like NORM!!!! when you walk into the staging area  “Nice to see you again, how have you been” isn’t something you like to hear from nurses.  Either way, we’re now hoping tomorrow (Saturday) will be what we were hoping for today with her birthday.  Relatively pain free and without Howard rearing his ugly head

Oh yeah, there’s a new character in this dastardly cast of victims.  Howard the hiccup.  Yeah, apparently chemo causes hiccups.  As you can imagine, hiccups with a drain tube sticking though your ribs isn’t real cool.  Howard and Dwayne are the dynamic duo of henchmen for Larry (the tumor in case you still need to catch up).  That and they are loud.  Like a walrus mating call.  Look I’m not complaining (ok, maybe a little) but they are insane. I could move the the couch but I really would rather lay next to her with it than be without any of it.  So I pass out.

Again, for all those that have ridden the wave and helped with the cause, thank you. I am constantly blown away by the generosity and kind thoughts.  It really puts things in a different perspective and one of these weeks when I’m not exhausted, I’ll just write about that.  This is hoping that things get truly boring to the point of, well, she went to chemo a day or two ago, she came home and ate a sandwich and took a nap.  I’m hoping I need something a little more riveting to write about than that.  Where the day to day for Elizabeth becomes mundane.  Either way, thanks for the support, keep with the positive thoughts, and have a good easter and eat a lot of Easter food.  Love you guys and blog at you later.

 

Three Grand? Seriously?

Let me jump right in. Where’s the kiddie pool?

So its been a while. First off, thanks for sticking around and waiting for a new one. We had a break from the temple of doom. Thankfully it was filled with good friends and family. Our heroines sister Judy came for the first three days of the week ((ironically, much to the chagrin of my liver) and her bff Debby came for thursday and friday.  I cant speak for her but it helped me out a ton as I was able to work and I’d like to think it lifted her spirits. We had another friend come in and clean the house the likes that even I wouldn’t/couldn’t do. Thanks Vanessa, that was great. We’re still amazed at the goodwill that comes from out of nowhere. If you’re following this, we’re blown away from the generosity and eventually hope to return the favor or at least give you a hug and a kiss. Well, from Elizabeth as me coming at you with arms outstretched is a terrifying sight. Like a black bear in Alaska wanting that cheeseburger in your hand. No damn good.

So we’ll jump ahead to today, sparing you the details of the weekend, wherein there was little sleep, a little (relatively speaking) sickness, and a terrible incident where i tried to paint princess Cheese’s room white (its what she wanted) and now have to call in a professional to finish it up because halfway through, I just had enough. Terrible lapse in judgement there

Oh yeah, today. The start of round two. Her bilirubin has dropped from 2.4 to 1.4. So a good to great sign. Dwayne the drain may be altered sooner than later which will help 1000%. We had a little help with the meds and hopefully they will take. She was a little “shaky” but think eliminating one of them could stop that nonsense. It’s a nausea one so that give me cause for concern. We (her sister being the we, I just take credit for everything here) looked up medications to help with her eating. Because, well, if I were nauseous I wouldn’t want anything north of a bagel anyway. Anytime she’s tried to go outside that, the results are what you’d expect. So we (she) found Remoral. I called the nurse honestly begging her to get her hooked up. She also mentioned Marinol which is a synthetic THC, you know, the stuff that gets you high with marijuana. OK. That could work. Munchies, I’ve only heard you get the munchies with weed (only heard, I have no actual laboratory evidence. Except that empty bag of trail mix in Amsterdam. And the two large pizzas in 1991 that wer sacrificed. But there’s no receipts, no evidence.) So I asked our nurse practitioner about it.

Well, that may not be covered under insurance. It could be $3000 per script.

$3000????!!!! Seriously? Three grand. I could get real THC that would bury everyone in the room here under a mountain of cheetos for $100. For three grand I could have a truck back up to my driveway, rent a forklift and pallet jack it into my garage, and make Cheech and Chongs “Up in Smoke” look like a cheesy after school picture with one call. This made me really thing about how big a scam the pharmaceutical industry is. Well, Ive thought it a lot (why is heroin so big? It’s cheaper than Oxys and other pills on the street) but this really brought it to light. Three Grand. Great googley moogley. So we went with the Remeron. Hope it works or I’ll be calling someone reading this. That’s right, I’m talking to you. Screaming in your ear you paranoid so and such. Boo.

So back to today, I kept her up and moving all day. The first time in god knows when she has all day. Friday is her birthday and we’ll celebrate it to the best of our ability.  So if you’re on facebook, please hit her up. If not, wish her one on here. If not that, a gift basket from Total wine is appreciated (scotch, single malt, or Rum). If you dont feel this is appropriate, a nice package from Hickory Farms with the summer sausage and smoked cheeses is always a crowd pleaser. Or just keep us in your thoughts, prayers, and whatever mojo you got. Love you guys and blog at you later.

Well, we’ll take that

Let me jump in somewhere over here.

This will be a quick one as I am watching a train wreck of an award show with a bunch of hillbillies obviously drunk in vegas. I cant miss a second because they keep saying something I’ve never seen before is about to happen so lets go…

We went to the temple of doom last Wednesday. Not sure which procedure was going to happen. Either the second drain (which from our sources was more than likely to happen) or the mapping for the radiation. Well we went in and the doctor said, no drain. The bilirubin is trending down and better not to disturb it and “fix what’s working”. We’ll take that and run. Because Elizabeth wanted no part of a second one. So they went to mapping. Should take two hours. I left at 1:30. Two hours for procedure. Then sit for two. I came back at 5:00. When I drove up I thought, huh, nobody has called me. Well walking up I get a call. They’re still mapping. Apparently it was a little more troublesome than anticipated. The chemo has already started affecting the veins and arteries they need to go through. So they need to re-evaluate. It’s nothing bad, just a different track and figure out the schedule. I’m glad we had the doctor we did because he threw a positive spin on it. Nothing bad, just figure out how to do it. I can respect this as every other job I have needs some tweaking. But for now we’re up in the air.

SO, we have visitors this weekend. Her sister Judy is here for the week and her friend Debby will be here later in the week. I will (hopefully) be able to have a good full week of work. We spoke with Elizabeth’s niece who will be taking in Ham and Cheese for a week in Washington DC. Not sure she gets what brand of nonsense is about to be thrown at her but she has our thanks. Hannah and also had a great talk with one of the heads of the theater dept at FSC who offered a lot of things to help out with college costs. She also basically threw a part in West Side Story during the summer at Haley if she wanted it and it sounds like she’ll do it. We also have a week off from the Temple of Doom so that’s a plus

There’s a lot of nausea and nonsense I’ll leave out here because honestly, I’m just exhausted. But we’re doing OK. Just keep us in your thoughts. I’ll bring a little more this time but I’m about to throw on a sleeping pill on TV (baseball) and pass out. G’night Toledo. Love you guys and blog at you later.

Well, that was a gamechanger

Let me jump in right about here.

So today has been a pretty special day in my life for a while. It’s the day that I met Elizabeth. Some people remember their anniversary. To me, the wedding is the brides day. The groom shows up on time, and we do our thing.  For me, the legwork was done a lot earlier.  I was a young 25 year old fueled by cheap beer and living in a cheaper apartment. I believe Cheech and Chong lived next to me as some of my memories are really vague. I hung out until 2 or 3 in the morning at whatever bar at the beach we frequented that night and managed to drag my ass into work at 7am. My shower was backed up every couple of days making showers in the morning a real treat. Standing in a foot and a half of water with a pounding headache and dry mouth was really gettting old. I remember standing there one morning, my feet marinating in a gross stew and thinking, Bob (I always refer to myself in the third person when I’m getting serious with myself) you really need to find someone soon. Well, enter my co-worker Guy, who said “Hey, I know someone you need to meet”. And gave me a number.

Now while I realized I needed a life change, the effort was less than stellar. I kept on putting it off and not calling her. He kept badgering me until I finally got tired of hearing it. So I went into an office and dialed the phone. Now look, I talked to people on the phone all day. People I didn’t know. I was smooth. Damn smooth. I pressed those digits with a great confidence. The phone rang a couple of times and someone answered.

“Hello” said the gruff man on the other line.

Well shit, I was not prepared for this. I fumbled with the paper. “Is Elizabeth there?”

“No” (cue up uncomfortable silence). “Well uhhh, ahhhh, could you maybe have her give, no wait, could I leave a message and call her later….”.  Pretty sure I blacked out and began speaking piglatin or in tongues at this point. That was a disaster.

I’m not sure if I called her back or not but that’s neither here nor there. Guy and his wife Debbie set up a blind date with a couple of other friends of ours. OK, now I was locked in. So what do I do the day of? Volunteer to help a friend move a couch. Real good Bob. So after moving this monster up stairs and having a few beers, his wife Missy says, dont you have someplace to be? Crap, yeah. So I took a couple to go and went to shower in the devils cesspool.

Upon showing up (a little late, because time wasn’t and still really isn’t a concern of mine except during work hours) I noticed Guy and Debbie, Tim and Jenny, and apparently my date with Guy and Debbie’s neighbor sitting next to her. I still to this day have no idea what possessed them to bring him. So I ordered a couple of margaritas and we ate, then I ordered a few more margaritas because, well, this was a lost cause. We went to some country bar after that. Again, this wasn’t in my wheelhouse as I really didn’t care for country music at all at the time (and still not my first choice). So lets review this blind date so far, awkward third wheel brought along, then hillbilly line dancing. Super plan so far. What could possibly be next? Oh yeah, how about a ride on a Ferris wheel so I could really get a good flop sweat going and hyperventilate. Maybe old third wheel could throw a towel over my head while I puke in the bushes. This was terrible. Then as I was at the bar getting a beer something happened,

She came over to talk to me. Well, this was a game changer.

We laughed about her dad answering the phone and the nonsense babble that I spewed  and made the typical blind date conversation for well over an hour. We both had to split and I walked her to her car. I promised to call her again even if her dad answered the phone. You ever hear of love at first sight and think its nonsense? I’m here to tell you its not. I pretty much knew from the jump that this was the girl I wanted to spend the rest of my life with. We went on a second date to Tim and Jenny’s wedding and had a blast. About eight months later we were engaged, nine months later we were married. I’m not sure where I’d be if I never met here but I would probably/more than likely/certainly be a lot worse off.  I could go complete cliche and say she completes me.  Nah, she rebuilt this from the ground up.  Even with everything that’s gone on this last month I wouldn’t trade any of it. I love her more today than I did yesterday, or last year, or the decade before. We’re a team, and this third wheel Larry, well he’ll move on just the same as that guy 21 years ago. How do I know this? Because fortune favored me then and it will now. Anyway, happy first date day Elizabeth. Here’s to many more. Love you. MUAH!!!!

Typical Fan Behavior

Let me jump right in …..

I’m a huge sports fan. Been one all my life. And I’ve watched a lot of games at sports bars around a bunch of less than sober people (and lets be clear, I was right there with them) or listened to a lot of sports talk radio where people (both the show host and callers turn into complete gasbags). And there’s always the guy that knows exactly what to do. That “well, come on. It’s so simple. X, Y, and Z. That’s what has to happen, make it so”. And you leave or exit the conversation thinking, look, if you’re so damn smart, you should give up your job as a security guard or bank teller or whatever, send that team a resume, hell, don’t even send one, just call them and I’m positive that they will be so dazzled by your brilliance, they will leave a blank check on the table in the corner office and just show up on monday. Because the guys in charge of the team, whom this is their livelihood, the way they put food on the table for their family, the fact they spend ridiculous hours just to get in their positions as well as still put in insane hours just trying to make this whole thing work, are obviously idiots compared to this guy.  They have no idea, you on the other hand would excel because you were salesman of the month at your job.

I say all this because I read my last blog post and I was that guy. I thought about it a couple of days later when we went back to the hospital as spoke to a guy that was getting his stomach removed because of cancer. His case and his wife/sister/whomever she was, the care they are getting is just as important to them as Elizabeth is to me. And they probably at times think that they are the only patients these health providers have, that the doctor should think about them at least 12 of the 16 hours a day they are at times when they are there. They aren’t and neither are we. These providers are doing the best job they can do. I’m sure if I were a doctor and read that last post I’d want to tell me to pound sand, or worse. I have no idea what these people do day in and day out. I was mad, and very angry but still, I went full Death Star when I should’ve handled it a little better. I make mistakes, you make mistakes, these people, while we feel they should be perfect will also make an error or two. Keep this medical team in your thoughts and on the wave. Because if this is to be pulled off, we need them on our side. We’re in the best hands and sometimes it takes a lot to keep that in my feeble mind. I’m got something of a quick temper when it comes to my family.  I attribute that to my mother.  I also blame her for my lack of height and folically challenged dome (bald head) but the quick temper is a double edged sword.  And something I wouldn’t exchange for anything, I just need to manage it better, especially now, so thanks mom.  I also spoke with nurse Judy and apologized for anything that was said as I had lost my mind and was running like a lunatic. They probably deal with it regularly but that’s no excuse  I needed to do it, I’m glad she accepted it and said it was no problem.

So anyway, we went on friday to the pain specialist to get everything dialed in. He bumped up one of the meds but they had to order it and we pick it up on monday. So yeah, our heroine has been hurting this weekend. We then went to an appointment with the social worker Michelle, who could not have been more wonderful and I wish we had this meeting last week as she could’ve talked me off the ledge during our episode. There was a ton of helpful advice and I’m sure we’ll be talking a lot more in the future, hey, she offered. She also might not get the second drain installed. Her bilirubin has dropped and they will test it next thursday to make the decision then. If not they will start mapping for the y90 radiation. So after 6 hours at the hospital we went home. 6 hours at the temple of doom is no way to spend a day kids, I’d highly recommend against it. But we go back monday for the second of six chemo pops. Hopefully this goes much better than the last. Hopefully she will begin to feel a little better. There’s a lot of hopefully in this paragraph because right now that’s all we got is hope.

So I’ll update mid next week on thursday to let everyone know which way that went and see how this mess gets solved. Again, this was a little heavy and dark and hopefully the next will be a little lighter and sunny. Once again, thanks for all the support and keep riding the wave. Love you all and blog at you later #uphillbattle

Seriously????

Let me jump in. Cannonball

So I’ll cut ahead from our weekend in Ponte Vedra to Sunday wherein our hero separates pain pills and such for the heroine in this story. As he starts looking over the nausea meds he notices they only prescribed nine in a bottle. With taking one every eight hours thats about three days. Hmmmm I say, that seems like not a lot. I go up to the pharmacy to see what the deal is. Apparently, they only give you three days worth then insurance will refill that in ten days.  Let me repeat……

Ten Days

That doesn’t add up. We’re starting chemo. We will need lots of nausea meds every week because, that the first line on the page of side effects, nausea. You’d think they’d look at that and go, this chick may need something to help with that. The chemo education doctor said, and I quote “if you get sick at home, we’re not doing our job here, call us immediately”. Remember this quote, because it will come up later.

So chemo starts monday. Seemed fine. There was an old man in the waiting room that thank baby Jesus and all the Jesus’s they wheeled him back in five minutes or less. He led off with “this woman died from a Brazilian butt lift. Go figure, a butt lift, huh”. He then went onto a review of the cafe food at the hospital, he was not a fan. But the soups, he seemed to like. The cajun bean soup was a little salty (had to agree with this) and the chili was really good (no, its not, who the hell puts kielbasa sausage and what seemed like pot roast in chili, goddamn savages that’s who). His phillipino nurse kept responding to him, just keeping him going.  Just on and on like the song “American Pie”. So many words adding up to nothing.

They took labs, they were backed up. We had a consult where the doctor seemed to know less than we did because, no labs. So we went into chemo. I found out from the app (not a doctor) that her bilirubin had decreased from 6.3 to 2.9. So awesome. Maybe someone will tell us, hey, she doesn’t need a second tube. We went home. She was fine monday, tuesday a little more queasy and I went back to the pharmacy.

I remember the chemo education doctor saying we should take the pills we have every eight hours (for three days) then take another med in the middle, something that started with C (again, remember this). I ask the pharmacist, is there anything else on that list for nausea?

Nope, we ran down the list. Ok. There was the medicine she was taking but cut in half from 8 to 4. OK, maybe that’s it. They’re in foil. I dont even know the name. Perhaps that’s the ones you take in the midterm. I’ll take those. I also called the doctor to see about the second drain tube. I was told by the young lad on the phone he would get with Mody and his nurse Judy and get back with us.

Fast forward to today. Leave for work and thank God I came home at 10 from a meeting. I see Hannah running across the house with plastic bags.  I hear my bride wretching in the bathroom. Now let me be clear, she hates getting sick. Again, this has happened to the wrong one of us as I enjoy a good puking. I call Mayo because, well, see above. It was horrible to say the least. I call her mother to come over and watch her and the girls split for the beach. I went to go look at a job where I think I know what’s going on as I kept watching my phone willing it to call. As I was leaving, around noon, I get a call back from nurse Judy. She got the story and said she would have to get with Mody to see which medicine they would prescribe, either this med that begins with F (finnagrin?) or this one that started with C.

Hold on, back up, this one that started with C, that’s the one the chemo doctor said throw that in between doses. I asked, politely, why in the blue hell was this not prescribed from the jump?  No good answer. Seriously? Whatever, just order the stuff. I’ll wait for the call to pick it up. Oh, I also called the other day about the bilirubin and tubes, how about that?

“I got that note, I still need to get with Mody about that”. Seriously?  It’s been 24 hours, could you please just mention it? I’ll get with you tomorrow, lets just get through this mess today

I had lunch, I went home. I doled out the 2pm meds. I then went back up to Mayo. You ever see the end of the movie “The Unforgiven”. Wherein Clint Eastwood just snaps and goes after everyone who’s wronged him? Yeah. That.

“Can I……”

“I’m here to see Dr Mody or his nurse Judy” (cue up spaghettin western, good, bad and the ugly music)

“I’ll have to call them”. “You do that, Elizabeth Reeves 4/14/69. Write it down and get me Mody or nurse Judy”

I spoke with one of nurse Judy’s underlings because she was “busy”. She handed me the prescription for the nausea (90 pills) and some script for Valium. I’m not sure who they were for but I guess if you stand at the front desk with blood coming from your eyes and a vein in your temple that looks like a cartoon character getting mad, they will give you anything just to leave and stop scaring people. I explained about the three days of pills in 10 days and how that wont even cover her next chemo treatment and again (politely) explained that this was utter and absolute bullshit. Oh, and “the chemo education doctor said if she got sick that they weren’t doing their job? Please, do your job, just do your job”

We’ll get it handled Monday when she comes in.

Nah, I think during a break in the action after the pain management we’ll revisit this because I’m tired of waiting. I’m tired of my wife feeling like shit. I’m tired of being treated like a number.

I’m just tired, and I know she is too. Eventually this has to get better though right? Yeah, eventually. Love you guys and blog at you later.

What were we thinking about?

Let me jump right in here

So its been a while, about a week. Been a little bit going on, so lets review. After our saturday night rendezvous with the er doctor/male model, Dr Dragon we went in monday to review for chemo. Spoke with the doctor and realized, much to our chagrin, we would have to get a second drain tube installed. We’re running out of names so we’ll now have a contest to name Dwayne the drains brother. We will dig deep into the prize closet and give you a big box of nothing but pride as we really have nothing to offer.

So we went in Wednesday for the install port for the chemo. As our heroine has named nothing in this story she decided to give her sidekick the name, Perry. Perry the Port. It’s not as bad as one would think. One would think that it would look like an electrical socket. No no, its just a little lump under the skin. Now is it a lump you want? Well, no. But will it stop her arms from looking like a pincushion? Yeah. Is that better? Absolutely. So we’ll go with that. We start with the chemo on monday (tomorrow). The nurse convinced us that everything you have heard about chemo is nonsense. The sickness, the hair loss, could happen, just drink a ton of water, everything should be fine. She even said, if you get sick at home, we aren’t doing our job here. Of course she also said if she does get sick, I shouldn’t touch it without rubber gloves. So that’s awesome.

The week went by uneventful as far as that. Little sore, but fine nonetheless. Friday I had a late lunch with a good friend (when I mean lunch, I think we ate, maybe) then we went to dinner with her family. We wound up at the house and her sister brought wine. I think around midnight Elizabeth opened the door to the lounge and politely told us to quiet down. Drunk as rats we decided to lower the decibels but kept on going for an hour or two more.

We went to a weekend at the Ponte Vedra Inn the next day that some of her parents at school paid for. Needless to say the morning after I was playing hurt but by the afternoon everything was back to even as far as I was concerned. There’s really not a lot margaritas on the beach can’t fix (yeah, I get the irony of that). We had a fine time and will be well rested and ready to start punching Larry in the head tomorrow with chemo.

One thing that came up though and her sister Judy said it a week or so ago. It’s really stuck with me. What did we think about a month ago? I had no answer and still don’t. Because I don’t remember. What did I think about? Every other thought now is about the situation we’re in. And its a lot. I know, I know, God won’t give you more than you can handle. Well God, you have served up Christmas dinner, Thanksgiving lunch, and Easter brunch and given us a platter the size of a WWE championship belt and a fork. But I now think a little more about what’s in passerbys heads. How I’d actually probably love to have what they think are problems.  Nah, they have issues. They have things that are going to work out one way or another and move on. Issues where that you can grab your loved ones, get in a car, and still have a fun night. I can’t wait for that night to happen again. I’m sure it will again. I hope to just think about what color tile I want to put in our bathroom. Why won’t the grass ever grow in this spot in my front yard. How come I can’t work out at my gym with flip flops. But tomorrow and the near future it won’t

On a little housekeeping note, I want to thank Heather for starting the go fund me site and my buddy Wayne for promoting it and having the Elizabeth challenge. I honestly have no words for the amount of gratitude I have for you guys and everyone who contributed. And again, the package on our doorstep. Come forward and be identified. At least to us so we can give you love you deserve. I know this post has been a little heavy but I promise the next one will have a few more laughs in it. I’ll go dig a jar of funny out of the backyard like a hillbilly digs out a jar of dolla bills to go out on the town with. I’ll try not to be so long between next time either.  Until then, love you guys and blog at you later.

Enter the Dragon

Let me jump right in…….

So things had been going well since our last episode. We sat around all of saturday and just did a big ol pile of nothing. Well at least our heroine did. A well deserved day of just napping and watching tv while I caught up on stuff that needed to be done. Cleaning up the garage, mowing the yard, getting the truck washed.  Typical saturday stuff while listening to podcasts. It was bliss. So Elizabeth took a nap and was asleep when I went to go get a pizza. I saw a couple of old neighbors, Steve and Ben and had a quick beer with them and their friends. I get the pizza and text Hannah to say they messed up the order but I’m leaving in five minutes.

Yeah, mommy is hurting and she’s squealing.

Well, this isn’t good. At all. I get home and she’s in extreme pain. I took two beats and said, we’re going to the ER. So we get there and they wheel her back. I’m not sure how Elizabeth took in everything but I was a mess. What could be causing this? Well upon review, we missed the 6:00 pain pill. We had wondered, what would happen if we skipped one,

Well now we know, thats not a good idea, no bueno, at all. Matter of fact it might be a step above biting into a ghost pepper on the bad idea spectrum. Probably below eating green turkey but its bad nonetheless. So we’re in the ER. Where they immediately jacked Elizabeth up with Dilaudin and instantly felt better. They took her back for ultrasounds and x-rays to see if anything was wrong with Dwayne the drain. The nurses in the ER apparently dont want anyone to sleep if they aren’t as they just would come in, then leave the door wide open. At one point one of the nurses or doctors walked by, opened the door, talked outside, and just left. Never coming in the room. What brand of lunatic does that? We’re they just screwing with me because I was in no mood for that nonsense.

Enter the doctor. Doctor Marc Dragon, MD (not just his initials but that means he’s a real doctor). Enter the Dragon. He’s a striking young man, tall, black flowing hair pulled back in a sensitive man ponytail.  Right out of central casting from Chicago ER. He saunters in and says (fortunately) nothing is wrong. The tube is draining and her bilirubin levels are down to 6 (we started at 11 so, yay). But besides the fact we missed a pain pill, what’s the cause of the pain?

“You have a big tumor in your liver, its not supposed to be there. It’s going to hurt” It sounds like a no kidding doc kind of moment but nobody had actually said it before. It made sense. The Dragon was a straight shooter, spitting fire. So after a bit, we were able to go home. We did between diddly and squat today. Thanks today for all the well wishers and calls we had. Hopefully we can have a good week, get the port in on wednesday and move forward with the chemo. We have an appointment with the pain management people to see what options we have moving forward. Anyway, again, thanks for the support, keep riding the wave. Love you guys and blog at you later.

Chapter 2. The Era of perpetual optimism

LET ME JUMP RIGHT IN!!!!!!!

So its been a week.  I really didn’t expect to have anything to write about but then again, this is uncharted waters for us so there’s always something. But we’re just getting fired up again so there will be more updates on a more frequent basis. We’re going into chapter two of this four part saga wherein we begin to beat the ever loving crap out of Larry (for those new on here, that’s what we call the tumor, because, Larry, seriously. Again, no offense to anyone named Larry, Larry, the second of the three stooges, John Laroquette, Larry Bird, Larry from Arabia, JR Ewing  (Larry Hagman) from Dallas, Larry King, Cousin Larry from the hit TV show Perfect Strangers, Larry Sanders, or Larrys Giant Subs )

So lets give an update on our heroine Elizabeth. She had the drain tube installed which a friend of the blog immediately named “Dwayne the Drain” because of the problems we had with it. First and foremost, when it drained, it drained like a garden hose hooked to a sprinkler in the middle of august. But low and behold Dwayne had issues, much like cousin Eddie in the vacation movies. Yeah, we got to have him around but he’s a pain in the ass (or the side, as that’s where it comes out). Dwayne is the type is of guy that you invite to the party and he stands over the plate of shrimp at the appetizer table eating it like his last meal.  Dwayne is the guy that before he goes out for the night, douses himself in axe body spray, points at himself in the mirror and winks and says, you’re the man before popping his collar (only to come home by himself). Dwayne is the guy that brings over a six pack of natural light for a barbecue, drinks all the good beer and liquor then after grabbing one natty light to go loudly says, I’ll leave these for you. Basically Dwayne had one job,  drain the fluid, and he couldn’t get that right. So we found ourselves back at Mayo yesterday to fix this problem. What causes it? Who knows, ask Dwayne. Either way, its back draining like a 22 year old on quarter beer night at a college bar now. So that’s good.

But today we went in for a biopsy on the “mystery” mass in the abdomen. Remember that? There’s four areas of concern then there’s the one outside that “we don’t know what it is”. So we went there today.  Both of us were worried/scared/terrified (pick one then multiply it by 104 times and that’s where we were. So while Elizabeth was plied with Valium to calm her nerves (and well deserved), I drank coffee. We sat in the holding area where the family next to us was watching “Matlock”. Usually Andy Griffith’s smooth voice is calming. Today, I wanted to rip their tv off the wall.  Then (and I think Elizabeth was asleep or just closing her eyes and not paying attention) I heard one of the young doctors/nurses/whomever ask another worker in the next holding area “do you know how to work a fax machine?”

Again, I know their at the top of their game and some of the finest of medical professionals we have, but it was like she said, hey, I’ve got this thing, a cassette tape. How does it work? My god, we’re fossils. I’m shocked my hip hasn’t given out before this.

Anyway, they take Elizabeth back for the ct scan to see the best way to biopsy this “unknown mass”. I took off for more coffee and a questionable muffin. 15 minutes later, a text comes…..

I’m back in holding. They couldn’t find anything.

I run back, she’s drinking this stuff called contrast that apparently (to her, I tried it) tasted like pond water strained over a dirty flip flop through a hobos underwear. So after downing two cups of nonsense they wheeled her back. I went to get a salad. A pound and a third of salad. I figured I had an hour so I went outside to eat. I sit down, I get a text.

Come Back

WTF?!  I woofed down that pound and a third of salad in a little over two minutes (if there’s ever a competitive eating competition for salad, I’m the man) and went back to the room. Walking back I wondered, what am I walking back to? How hard am I about to get kicked in the teeth. However,…..It seems like, well……..

There was nothing there. Wait………..what?!

While I tried to be mad that we wasted a day, I couldn’t. We finally had another win. Hell yeah, We’ll take it. It might have been somebody’s thumb or a junior mint or some other nonsense but either way, nothing, zilch, squadooch. We came home, she passed out for four hours, I was blown out on caffeine so I mowed the yard and picked up every leaf. We ate tacos and toasted the day. We go back monday for the consult for chemo then Wednesday for the port then start the regular season (chemo) the next monday. She’s still hurting a little bit but hopefully that will subside and she can get big and bad for the battle ahead.

A little housekeeping on the blog here, my cousin Lauren posted that perpetual optimism is a force multiplier. I saw that this morning and felt, yeah, that’s it. We’ve had several people that have given their support to the cause in several ways that truthfully we’ve been moved to tears. From just riding the wave with emotional support to friends just being there to talk. And support in other ways we never would’ve even thought of (again, the package dropped off on thursday, I’m sure you’ll never come forward but there’s a special place in heaven for you). If nothing else its shown me that there’s a lot of good in people, that they actually care. All the nonsense going on today (at least for me) can get drowned out by people caring and thinking good thoughts. I We love all of you. We’re absolutely blown away. As for myself, its crazy to actually hear people that I don’t know say, “hey, I follow your blog”. (One being a freshman in Haley’s class so I need to apologize for the mf’er I threw the other night) That’s great, keep it going, spread the love and lets just see if we can move mountains with a force of positive thought. It’s all about perpetual optimism being a force multiplier, and we got it in spades. So lets celebrate this win. It’s a long season so we’ll keep working, with all you behind us, I’m not sure how we could lose. One down, four to go. With Larry standing there on the top of the hill. All fat and sassy like he owns the joint. No sir. I’m going to go lay down in my bed tomorrow with my wife (been sleeping on the couch because well, I’m a lot to sleep next to, and didn’t want to wake her up) and before I do will think a thought of gratitude. Well, a couple of thoughts. And you should too.

So love you guys and blog at you sooner than later. Ride the wave. #uphillbattle #chaptertwo

Done, done and onto the next one

Hey guys, let me jump right in…….

Whew, what a day……

I wrote these words last night. I wrote a lot more but thankfully was interrupted by a circumstance I’ll get into later. But the post was terrible. It was bad and even worse as we hadn’t spoken with ham and cheese and I didn’t want them to read it and find out what had transpired that day as it was equal parts good and bad but nonetheless, they needed to be told face to face. I’m one who believes in the universe will put things in place (hopefully for the good) and happy that forces stepped in (more on that later) and stopped the nonsense I was spewing last night. So again,

LET ME JUMP RIGHT IN!!!!!

The last we spoke our heroine was in pain from the tube installed by the temple of doom. Well, that pain never let up. It actually got worse. Let me tell you, there’s nothing worse than seeing your significant other in that much pain. Nothing. At all. Anyway, we went to the 12am meeting. We told him about the severe pain, he said something about taking some Advil because narcotics just mask the pain. Dude, we aren’t getting shot up in the knee to play the second half. This is real pain that we would gladly mask until it goes on. So he prescribes Dialadian.  The Dr then pulled out the MRI. Well, instead of now just the one cancer there were four, let me repeat, FOUR, areas of concern. Two in the liver, one in an artery of the liver and one outside which “we don’t know what it is”. OK, the one could be anything, its probably nonsense but four inside the liver and area. That Larry is tougher than we thought. We ended the meeting with, its inoperable. And “I’m sorry”. Wait………

That’s it??

NO!!! No no no no, thats not it. Seriously, what the blue hell just happened here? We weren’t expecting that? And you were afraid of giving her narcotics to mask the pain? Great, good call. Elizabeth was scared and we sat there for a little bit. I wanted her to lose it so bad and get it out but she couldn’t cry because it physically hurt to. That killed me. So we went home. Elizabeth went to bed and I wandered the house staring at the wall and wondering where I would puke in the yard. How much do we pay dance? What size shoes do the girls wear? How do I tell them how to dress, much less dress myself? I was about to wear flip flops to something a little more upscale the other night before she stopped me. There’s things that only one spouse knows because the other one has different stuff to deal with. We actually talked about that a few weeks ago in the concern of financial stuff and that was what I dealt with and she wanted to know more about it. That was of no concern to me now as Ham called me earlier in the week needing to check out of school and I had trouble finding the number to the school, much less who to talk to in order for her to leave. I keep telling Elizabeth through this whole thing, we’re a team, no need to thank me, its just what we do. I realized at that moment that my teammate was hurt pretty bad and I didn’t know what to do.  So with great trepidation we headed up to the 2pm appointment with oncology.

Dr Mody came in. He saw the drain pipe and said, I’m sure that’s bad.  Bad, we said, is an understatement. We told him about the pain. “Are you taking the Oxys every four hours?” The bottle we had said every six. He gave us a look of, well, of course its going to hurt. He then prescribed us a 12 hour OxyContin and another short term one if the pain spiked.  OK, what about this bottle of 80 diladin I have in my pocket. “Oh I wouldn’t take those”. Dude, after the two days we just had, If I were in the pain she was in, this bottle would’ve been gone by the time “The Big Bang theory” was on at 8 o clock. But we had something to dial in the pain. Then he gave us a plan. Three rounds of chemo, two weeks on at once a week, one off. Then Y90 radiation. Wherein glass beads full of radiation are shot at the tumors and they blast away. Then three more rounds of chemo. Then we reassess. So my question was…

If it gets smaller, is surgery back on the table?

He said sure. Now at this point, you gotta have faith right? Because of all the nonsense we’ve heard today, that was at least a positive. So we went out cautiously optimistic. She gets the port for the chemo on the 15th of this month and we are expecting about 24 weeks of everything. But, still pain.

We got home and I grabbed a pizza because we needed something completely unhealthy to eat. So after dinner I started to write the (now lost) new post and she says, hey, is this bag supposed to have this much blood in it?

Sweet Jesus, WTF???!!!! I looked and in addition to blood there appears to be something that looks like loogies hawked up from a homeless man riding the tracks with emphazema. I call Dr Joesph (our Dr friend we know who greased the skids at mayo and has been a huge asset) and he says, its your discretion, but if she’s going in for x-rays in the morning, you could wait til then. It sounded like just a blood clot to him. I took Elizabeth to bed and again had to help her and worry all night about the snotty nonsense in the bag.

This morning was no bowl of cherries either. The dressing around the tube didn’t change as easily as yesterday, lots of pain, lots of cursing from each of our sleep deprived mouths.  To say this was a nightmare is selling it short. You have to go to sleep for a nightmare and eventually you wake up. This was just terrible on every level. But it was done and off to mayo we went.

We met Jim in the waiting room and after Elizabeth went back we had a really cool conversation with a woman in the waiting room. She was an RN and heard us talking about Y90. Her husband had it several years ago and she went into their story. Her and Jim had a better conversation as I was just trying to summon the gods of Starbucks to stay awake. But she gave me a little hope. Spoke about how the chemo and radiation had little to no side effects (reinterating what DR Mody said) and gave us some good websites to look at. I know I’ve said it before by my brother in law is just the best. The amount of research he’s done on this is phenomenal. While I’m dealing on the front lines he’s gathering knowledge and letting us know when we get a minute to discuss. He’s the best and I couldn’t think of someone we’d rather walk through hell with.

Anyway, they adjusted the tube for Elizabeth and its draining a lot better. They showed her how to clean the tube which made more sense and really makes me question the nurse that showed us in the first place what to do (really, it was that wrong). We had a family meeting where we circled the wagons and talked it out with the girls. We gotta stay positive be cause either you keep skiing behind the boat or let go of the rope. And one of the two ain’t an option, no matter how far we get drug, nobody lets go of the handle. She’s in a lot less pain now that its doing what its supposed to be doing and she’s hopped up on painkillers, so hopefully for her its a good night of sleep, finally. It’s the weekend and besides taking cheese to dance at 10 and Elizabeth to get her hair done at 2 I got nothing. Well except a full bottle of Myers rum that is going to get a couple more pulls then to the couch to pass out and see tomorrow. So this ends chapter one of this story. Chapter 2 will go into the treatment and the beat down of Larry. We’re going to get Larry, we’ve got too big an army to fail. This story will have a happy ending, believe that and have patience. To quote the Foo Fighters, done, done, onto the next one. Gonna take a week off until we go back to the temple of doom. Give your loved ones a hug and tell them you love them. Keep riding the wave with us because it means a lot. I said it from the jump and it holds true, this ain’t a sprint, its a marathon. So take care of yourselves and keep the faith. Love you guys and blog at you later. Big kiss. MUUUUUAAAHHHH!!!!!