Chasing our tails

I’ll jump in right here……..

Hey kids, I know I’ve said about a hundred times I would post more. Well, that was just wrong. I’ve been extraordinarily tired and had zero energy to let you guys who’ve been following this tale what’s going on. For that, I apologize. Anyway, onto the status of our heroine. Last we spoke was prior to the morphine pump being installed. So anyway we went in early morning on January 3rd. An outpatient surgery mind you. They would keep her in the hospital for a night just to make sure there was no infection, would be no problems. Now mind you, they are installing a pump thats about the size of a gas cap. Up her spine. She was already in pain mind you. So that scenario didn’t seem right but what do I know, I rent scaffold for a living. Ok, so she gets wheeled back, I head back to the hotel across the street to get a nap. While I’m thinking about this a special thanks goes out to Kitty Bollinger for picking up the room for us. It was a godsend but I have a story about that later as well. So after she gets admitted to a room after the procedure I head back. Her pain level is at a 10. She can’t walk by herself across the room to the bathroom. She has about a seven inch incision on the right side of her stomach and a two inch incision in her back that both are stapled up. Again, I just rent poles for a living but this doesn’t appear like it will magically be better by tomorrow to go home. The next day I guess it was though as the pain ramped down to a eight or nine (again, one to zero is what we’re looking for). Her leg was having trouble moving out of the bed and still, walking ten feet to the bathroom was labored. So the nurse comes in while I’m watching Friends or food network or whatever the hell was on the tv right then. The TV in a hospital room is strictly white noise and light as whatever is on is just inconsequential. It could be partially naked supermodels talking sports with the resurrected zombie corpse of Jimi Hendrix playing behind them and I’d barely pay attention. Anyway the nurse comes in and tells me “we’ve all discussed it and we’re keeping her here another day”. Thanks. Because there was no way I could go home with this “outpatient” situation. So we stayed another night at the temple of doom.

Now after the nurse informs me that we’re staying another night, I thanked her for all their concern, then I remembered, I checked out of the hotel that morning. I looked at the purple couch/torture rack and began to sweat. I couldn’t possibly go back to that. I felt like that Seinfeld episode where Elaine asks Jerry to sit in coach instead of first class on a plane and he just scoffs. “I Can’t go back to that!!!” So I looked at my bride, said I’ll be back and went to get another room for the night. Upon arrival I was informed that while he told me last night that there were rooms available (I had a feeling), that they couldn’t get me one because half the hotel had no heat. I begged and pleaded to just give me one. I have blankets and jackets. I just need a mattress. Nope, come back later and hopefully they will get it fixed. So after three or four times and calls the woman at the counter said it wasn’t happening. The heat wasn’t back on and they had nothing for me. Defeated I wandered down the back hall. I got to the door and I realized I really needed a beer because I was about to erupt. So I wandered back up to the bar to order an overpriced miller lite and saw the guy that I was talking with the whole time. He started pointing at me from the front desk. The other woman comes up to the bar and says the only thing that went right during this ordeal ” Mr Reeves, we have a room for you” THANK YOU JESUS!!!!!!! Anyone who says you never solve anything with alcohol is has just been proven wrong. “It’s only queen beds” She could’ve said it was a short twin bed and I would’ve bit. So that was nice.

Back to our main story though. We get back to the house on friday and shes still in pain. There’s also still the problem of some weird nerve thing that they hit during the morphine test that caused pain in the nether region (and still is there). There’s fluid down there as well and we have no answers. She also had Dwayne the drain changed out the day before the surgery so theres that pain as well. Plus the pain of getting a gas cap installed in your side. So this essentially is just a huge, perfect, shitstorm of things that can cause terrible, mind numbing pain. Those days were rough. Then on top of that she had chemo the next wednesday. This new chemo treatment just kicks her ass with nausea. Basically to sum everything up shes been in bed since the surgery. We did go to pain management yesterday as the pain down under was still terrible. They cranked the pump up to a pretty good dose and we upped the meds at home. They took the staples out in the front but the back had some sort of fluid gathered around the site (seriously, enough with the fluid). They will take those out next week. It’s been a hellish two weeks but today has been better. She’s moving better and feels ok. Hopefully we can see the light at the end of the tunnel with this pain. It’s got to get better right? We’re due for another win. There’s still the issue “down there” which according to a doctor friend of ours (which again, I’m truly thankful for because I feel I can talk to him with a little different tone) after speaking with our “team” it could just be something that is not fixable. Again, and I’ll say this until the bitter end, yes, could it just be coincidental that this problem began after the test. But damn, it just sticks in my head that maybe it was exacerbated by it. Like we told all the doctors and nurses, we’re past pointing fingers, just what is it and can it be fixed. Hopefully it can or be masked. We’re also going to have acupuncture done by the neurologist that performed the surgery. He’s really good and has gone above and beyond to get this figured out, calling people in front of us to get answers, etc. So hopefully that will help, couldn’t hurt right? Today though there were a few good hours. Then it went south again. Hopefully tomorrow there will be more than a few. Then the next day a few more. I don’t ask for much, it’s the least the universe could do.

A lot of people have asked how I’m holding up. Ok I guess. I started meditating again at the beginning of the year. It sounds hippie dippy but I’m a huge believer in it. It’s misunderstood for sure. People think, you just sit there and dont think. It’s the opposite, you do think but just one thing at a time. Take all the noise out. Sit the phone across the room and just close your eyes and shut the hell up. Once or twice a day for 15-20 minutes is all you need. However I thought I needed more. So I went to this place that has sensory deprivation tanks. If you haven’t seen them or aren’t familiar with them they look like the escape pod in Star Wars with a foot of water in them with 800 pounds of Epson salts so you can float. The temperature is the same as your body temp as well. You get in and close the door and just lay back. No light, no sound, you cant feel anything, completely disconnected from everything. Well I say you can’t feel anything until you want to wipe a bead of sweat out of your eye. What the girl who gave me instructions didn’t tell me was that if you get this water into your eyes you might as well have put hot coals on your retinas. That really hurt for about five minutes but you live and learn. At one point your mind starts playing tricks on you and you feel like you’re floating through space. After an hour of absolutely nothing but sitting in there with your thoughts you emerge completely and utterly relaxed. Kind of like after a really good massage and you’re spaced out. I even got home and think I drank one beer out of habit but was really disinterested in it. This feeling lasts for a few hours into the next morning. I’ve also found I can get to that relaxed place a little easier when I meditate. So I’m doing this every ten days like a shower whether I need to or not. I was asked what do you get out of it by a friend and all I can say is I think everyone gets something different. For me though it was awesome and well needed. We actually talked about getting Elizabeth into one. Tape up Dwayne and I think it would be cool and out of the water.

I’ll try to write next week after we see the pain management people again and the “team”. Hopefully we can get more answers and keep progressing to the point where some good days are ahead. Until then love you guys and blog at you later. Big kiss MUUUUUUUAHHH!!!!!!

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My wish for you

So I’ll jump in here, even though its cold.

OK, so its been a bit. It’s been a rough month for team Reeves here. I had one blog post half written but it was terrible and I knew there was more story to tell, so I let it die. Anyway, lets get into it. Our heroine has had one hell of a time. From the morphine pump test hitting a strange nerve and sending a shockwave to parts unknown (which sent us to the ER on December 30th, where we found out that there are three Doctors there that have sensitive man ponytails, go figure). Oh also, we had hoped that Dwayne the drain could get removed. It could not at the last minute because “the doctors are not to excited because they would have to replace it with something else”. Awesome. That could’ve been told to us prior to the couple of weeks before when we asked about it. Honest to God, it seems like every time we’re about to turn a corner we hit a brick wall. She’s miserable (missed Christmas Eve dinner, more on that later) and the holidays basically ate a plate of shit stew. We were hoping they would make it ok but quite frankly they did the complete opposite. I’m tired and keep going because I have no choice. But something has to break right soon. Other than just the chemo is working, because other than that nothing else is. So yeah.

Although at Christmas Eve dinner I had a great talk. My nieces boyfriends mom was there. She gave me a prayer blanket to give to Elizabeth. We then started talking. The only thing I could relate it to is the ghost of Christmas future. Now look, I think Ive said maybe five words in three years to her and two of them were Merry Christmas. However we started talking. She lost her husband 19 years ago to cancer. Now usually people when the conversation veers toward this direction go to the standard “I dont know what to say”. I want to say to them…..

OF COURSE YOU DON’T!!!!!!!! YOU HAVE ZERO IDEA WHATS GOING ON IN MY HEAD!!!!!!

But she started out with a simple statement, Its different every day. YES!!! Yes it is. And you feel lost and confused. YES!!!! She got it. And wasn’t afraid to say it. Because she stood in the same rainstorm I am now. She went on to talk about how shes doing now and the troubles of dealing with it since. Now remember, this has been 19 years. I can only pray that things work differently for me than the picture she painted. One thing we did talk about was relationships. I’m 99.96% positive I’ll never marry again. Why would I? I had my soulmate for twenty plus years. I can’t imagine ever having a more perfect partner than her so why try. I’m sure I’ll date, but marriage, the thing where you give yourself completely to another person, that part of my heart goes with her. But I kept asking about how she moves on and how scared I am about it. I think about a talk I had with one of my best friends. He said he wasn’t worried about me right now. I’m tough enough. Or right after all this comes to pass. I’ll have enough to do. But after the girls leave, thats when he worried about me. I felt that as one night Ham was out with her boyfriend (again, great guy, dude came to Christmas Eve dinner. And they are facebook official. And he’s come at the right time, so the universe has done right by me here) and Haley was at a friends house for the night and Elizabeth was asleep in the bedroom. I’m puttering around the house and it hit me, THIS SUCKS!!!! Even if I’m on the couch watching some shitty rerun of NCIS with Elizabeth laying on my lap, shes there. I’ve got someone there. What happens when I don’t remains to be seen. From listening to the ghost of Christmas future I really dont know. But we’ll find out and keep going.

So anyway its New Years Eve. Number one, I ate the black eyed peas for good luck last year and they underperformed. But two, this is the time when we make resolutions and lie to ourselves about losing weight/working out/all the positive nonsense we know is completely unattainable. However this year instead of the lies and all that make an oath to yourself. Its pretty simple really, I’ve done it a lot more this year myself and its my wish to you. Love a little more. Tell the people who are close to you exactly what you feel about them. How much you value them and love them. Its a little tough at first, especially for guys because we have that rugged exterior. But, you’ll be surprised how easy it gets once you start doing it. So tell your friends you love them, hug your family a little more. I’m glad I’ve got Ham and Cheese to prop me up. Realize that nothing, and I mean nothing lasts forever. I wish that none of you have to deal with anything like I’ve had this last year. I heard a quote the other day that great fighters are not remembered by the great punches they threw but the times they got up off the canvas to fight again. I’m grateful I have a lot of people cheering me on to get up and do it again. I love all of you. So happy new year, I hope it bring you nothing but joy and prosperity. Peace, love, and blog at you next year. Big hugs and a kiss. MMMMUUUUUAAAAHHHHHHHHH!!!!!!

Just a little perspective

I’ll jump right in here

So its been quite the week. We went in thursday and spoke with the doc. He sounded on board with the pump as well. He made a few calls while we were there to push things up. He could feel our frustration in the fact that this cant keep going the way it is. The scans/MRI looked good. There’s zero reason why she should be feeling this crappy. So we’ll install the pump and pray for better days. We go in for the next MRI/Test on tuesday and roll on from there. Hopefully they can everything installed by Christmas so we can all have a good one. Really hoping for this. We ain’t at the end of the road yet. And praying that this relief can keep alive the hope for a miracle, which we still need.

Speaking of Christmas, as some of you know I play the role of Santa at Elizabeths preschool. It’s really one of the coolest things I’ve ever been involved in. To have all these kids from two to four years old look at you as Santa and the magic in their eyes really gets me in the Christmas spirit. So I really needed it this year and there was no way I was missing it. I drug Hannah up this time to take pics and get some community service hours. So I suited up in the finest heavy costume of poly and ester (yeah, it doesn’t breathe and its hot. Bad hot. Last year I started to feel a little queasy and light headed halfway through. This year I wore a safety vest underneath and stuck cooler bags all in it. Also they cranked the AC down to temperatures you could hang beef in the room so that was super nice.) and made magic happen.

I told Hannah theres some things you can count on. One, theres one in every classroom that will scream and cry and want no part of any of it. Those are fun to try to “break the face” and get them to like you. Of course there are some that still will have nothing to do with you, and the parents want a picture so they come up with the kid. I would love to see these pics as I hammed some of them up. Nothing bad, just a thumbs up and leaning in for a Santa bomb. Two, there are some really great lists. One kid buried the lead as he wanted, in order, a belt, socks, some shoes, pants, and oh yeah, the last item, an xbox. Another wanted waffles, hot dogs (with chili, cause Santa likes chili) Cheetos (he likes the crunchy ones, not the poofs) and a Bologna sandwich. One kid didn’t bring up a list but wanted everything that Santa suggested. Motorcycle, yep. Train, yep. Gas grill, yep. Mitre saw, yep. But this one kid really did a number on me (and Hannah, who lacks whatever is in your brain that makes you cry). He brought his list up and we went over it. Standard stuff and really nice kid. Then he looks right at me and asks “What does Santa want for Christmas”

“What does Santa want for Christmas.”

It took me a couple of beats to get my bearings then another couple to think of an acceptable answer. “Santa wants all the boys and girls to have a Merry Christmas”. He then jumped and ran off. I looked at Hannah and she just said, phew. He about got us didn’t he. Yeah, that was tough. Because theres things that Santa just can’t deliver. Well besides that dragon that breathes real fire. I cant tell you how many times I’ve thought about that moment since then. Thats why I do it every year. As much as the kids and parents enjoy it, I get far more out of it than anyone. It’s a magic. It’s a selflessness. It’s a morning of after all year of grinding and beating your head against the wall that makes you remember theres always good in the world. You just got to have a little bit of perspective. That sometimes maybe we need to remember that inner child. To whittle things down to something simple. It would never occur to me to ask, what would Santa want, but we all want something. Even the guy in the hot red suit.

Anyway, I’m tired. And next week will bring more fun. So I’ll keep everyone updated as we get more news. Love you guys and blog at you later. Stay nice.

It ain’t a sprint, its a marathon

Let me just jump right in …..

So, last friday, Elizabeth goes to the doctor. She calls me freaking out. “The doctor says I have the symptoms for Hepatitis A.”  Well, hepatitis never sounds good so like any doctor who’s ever stayed at a Holiday Inn express (or Red Roof Inn) would do, I went to the google machine and looked it up. Apparently, you feel like crap for a few weeks but with antibiotics, its all cleared up in a matter of weeks. But, understandably, she’s worried. Don’t worry. We’ll be fine. I gave her a hug (even though I could get something, that’s small potatoes, I laugh at hep A) and told her everything will work itself out and we’ll be back to normal in no time

Fast forward to tuesday of the next week.  They call for an ultrasound. Wait……That doesn’t sound quite right.  At least to me and probably to Elizabeth as well.

Wednesday, meet with the doctor. OK, there’s no hep A. Well alright alright alright. That’s great news. But there’s a blockage from the liver to the bile ducts. Might be stones, might be a gallbladder. Either way, its a relief right? No Hep A. Awesome. They did send us immediately to Baptist south for a cat scan to see what the blockage is because, there’s still the jaundice (yellow eyes and unbeknownst to me, yellow skin which apparently, she looked like a minion) and the itching. So we need to figure out what’s happening.

So, after checking in, answering the typical same hospital questions over and over and once more again (seriously, they type this stuff in and write it down, is that just for show?) we sit in a waiting room for two hours waiting for a cat scan while CNN blares the story about Donald Trumps relations with Russia, his meeting with Israel’s Netanyahu, and how these emails tie into eretile dysfunction medicines and walk in bathtubs (the commercials may have blended in at some point). So we go to a room to await the results.

Several people came in and out of the room. One doctor, who we’ll call Mumbles couldn’t get the mouse working on the computer (climbed under the desk at one point like a mechanic working on a transmission) and was about as non informative as drywall. However one doctor came in. After hearing the story of what was going on and the symptoms for 583rd time (seriously, why even write anything) she says, well I’ve got the results and pulls them out of her pocket like Maury Povich with the paternity results. There might be a tumor.

Tumor

Whatever she said after that was ignored. I looked at Elizabeth and we melted. Seriously? A tumor? Couldn’t be right. Or if it was, it was nothing right? It’s a hospital, they cut these out all the time. It’s like having your brakes squeal a little and they say, well, new rotors for you. It’s a bit of a pain and something you didn’t expect but it’ll be fine right?

Well……

The next morning the oncologist comes in. Apparently (and again, this is worst case scenario) Elizabeth has this rare form of Cancer called a “Klatskins Tumor”. I post the name so you can look it up and go, WTF! How in the world does she get one of the rarest forms of cancer. 1 out of 100000 cancer patients gets this!  Not 1 out of 100000 people, no, 1 out of 100000 cancer patients!!!!! There’s like, 150 a year and we pulled this card? And it typically hits people from 65 to 80 years old. Yeah, and she’s not a liver abuser like myself or almost all my friends. Seriously, how does this happen?  And so quickly. There’s really no answer except in this hand of cards we got thrown a stinker

Anyway, they ran tests (endoscopy) and got samples from the lymph nodes and from what the oncology doctor said, yeah, the cells are cancerous. At this time while Elizabeth was still knocked out I went outside, threw up and called my brother in law Jim (who I will never, ever be able to thank enough for his support) to alert everyone. I got back in the room before they wheeled Elizabeth back and……..well. That went about how you would expect.  I think, well know, we’re still trying to wrap our head around this new reality

So here we are.  I’m pretty confident we’ll bring Elizabeth home tomorrow (Saturday). They put a stint in her to get the liver function down to a normal level and hopefully get her back in her own bed where she can get some sleep and turn her brain off for a bit. We’re going to the Mayo Clinic where apparently the best guy in the world that handles this is at the hospital. And whatever they say, we do, and move on from there. We have a great group of people that are looking out for us and moving this along at a quick level that we all think this situation deserves.  The support we’ve gotten from our friends and family is tremendous. I sure never realized how great we had it at that level. It’s overwhelming and I can’t thank you guys enough. Words cannot express the gratitude both Elizabeth and I feel knowing we have an army behind us. I’m going to keep doing this blog to let everyone know where we’re at in the process. Some days may be good, some may be bad. There may be times we just circle the wagons and dont pick up the phone or answer texts. Just know we appreciate the good thoughts, prayers, and mojo you send our way. And keep up with the blog. It’ll give me something constructive to keep my mind occupied and hopefully we’ll all get through it in one piece. Because as I heard one time in a elevator in Vegas and it really sums this up for the first three days, this ain’t a sprint guys, its a marathon. Love you all and blog at you soon.

#uphillbattle

The reports of my death are greatly exaggerated

I’ll jump in over here

Ok, it was a roller coaster of a day. One that if they opened it at Busch gardens you would have to preorder tickets to ride because it was that up and down. So lets clear some things up from yesterday. Nobody is dying tomorrow. Yes, we have called hospice (more on that later) but we needed to get into their que. Again, while things are sliding in the wrong way, nobody is dying tomorrow. My bride, while she’s taken a lot of shots, is not going down yet. She’s still battling. She’s stubborn. I say this with all due respect, which I know usually follows with something not respectful at all, shes a tough broad. When people have said the pas few days how strong I am, I shake my head and laugh. I’m as tough as wet toilet paper compared to her. To put it in music terms, I’m Kenny G to her Metallica. In sports terms, I’m the Browns and shes the ’86 Bears defense (I cannot give any credit to the patriots who I will call out here as a sham and all smoke and mirrors). She’s my rock. She’s the one that I look at think man, when I grow up, I want to be that badass. I can’t emphasize this enough, I adore her with every fiber of my being. And while things are going south, to quote Mark Twain, “the reports of my death are greatly exaggerated”. Now, for the update.

So we head to the temple of doom for the pain management meeting. The Dr come out of the box with “so theres been discussion of a pump”. Uh, I think I vaguely remember one meeting with a doctor where it was mentioned in passing. So he went into it. Now I dont know if he gets a commission off of these pumps but the dude sold it. Basically shes on 200 mgs Of morpheme with all the dilaudin and oxymorphone they bumped her up to. This device, once installed internally, would reduce it to 1mg a day with much better results pain wise. That and if shes taking less pain pills the nausea lessens so she can eat, she will have more energy as a result of more food and less pills, and get out of the cloudiness shes been in where shes in bed 20 hours a day (I’d like to say thats exaggeration, but its not). So we go in for a test next week where they inject the drugs into her back and see where shes at after three hours. If everything is cool they can install it. It’s all internal. There’s the question of “well why didn’t they do this before”. They have things they have to do. I’m a little puzzled why they just bumped her meds up and didn’t offer this. The Dr said in advanced cancer cases this is the best. That there was a woman on significantly more painkillers they installed one in that was a game changer. I could beat my head against a wall and ask why but that would do zero good. Beating your head against anything is never good. Or getting mad because theres no cups in the bin by the water fountain to take pills with. (Note to self, those dispensers are made out of strong metal and they frown upon giving ice bags out because you had a belly full and laid into it. Pain management has its limits and that is out of bounds). So while its small, we’ll take the win. And hope that we can get a few more good days from it. Because goddammit, we need a few.

So that brings me to the hospice visit. The meeting was OK. Nobody, in the history of the world has ever said, wow! That was a great Hospice meeting. No, it was a meeting with mortality. She (the nurse) was really great. She explains things that are coming up. That care comes after our heroine has thrown in the towel on chemo. There are some things they can do but they really step in after, well………..

Look, I listened and got the gist of it. I got a booklet I need to read. They will keep in touch. They’re calling me next friday after we meet with the doctors next week and see what happens with the pump. I got a call from a friend that said “take the help, Whatever they or anyone offers take the help”. I get that. I will. It’s just hard to do it. I think for both of us. We will cry and scream and yell to our friends. But with each other, maybe to our detriment, we both get big and bad and want to go through that wall. We’re a pretty good team in that way. Either way, they’re involved now. But again, we’ll live for another day for as long as she wants to. Yeah.

Again, thanks for the thoughts, prayers, and good vibes. I got a call from a guy that I haven’t actually spoken to since we played boys club football in the Mcgriff green jerseys. I’ve gotten messages and texts and calls that have left me speechless. As much as everyone “doesn’t know what to say”, I’m in the same boat. Except I’m/we’re grateful. I could go on and on about how much this has changed me and altered my perspective, and it has, but I bought a carton of Bryers mint chocolate chip thats calling my name and a wall to stare at. So I’m going to do that. Thanks for the kindness, hopefully we didn’t use it up already, cause we’ll need it later, no doubt. Love you savages and keep on rockin the free world. Big Kiss MUAHHH.

Thanks, and Black Friday, Saturday, Sunday, and Monday

I’ll jump in over here.

Yeah, its been a while hasn’t it. I really thought about this one a lot over the past couple of weeks going over and over in my head how to write this. Still not sure but I needed to write to keep everyone who has followed this journey updated. And before you say it, I know, I owe you nothing. But you’re wrong and I’ll tell you why later. First, the update on our heroine. The last three weeks have been bad. From upping the pain meds to stop the searing pain to the chemo and the nausea, she’s not really eating a lot. So as a result of that she has no energy, therefore she doesn’t get out of bed a lot. So as many of you saw today, Hospice was called. We have an appointment tomorrow at 3PM. Then back to the Temple of Doom wednesday and thursday for another round of chemo sandwiched between MRI’s, CT’s and doctors visits. So yeah. I could go deeper into this (a lot deeper, some of you know) but I can’t. Because calling hospice is almost to much weight for me right now. Everyone has asked at some point, how are you doing? Two word answer,

Not well.

Not well at all. I’m sad. I’d probably say a bit depressed but I’ve never been before so I dont know. I was asked at Thanksgiving if I’m sleeping. Yeah, maybe too much. I’ve never slept through a Florida/FSU game and I know it was the right year to do it but man, when a noon game is too late for you there might be issues. I have cut down drinking a bit so thats good I guess. It’s hard to talk to people still. Either I just blank out or eventually just become infuriated listening. I’ve realized that and I know I’ve said it a million times on here and will say it a million more, I work with the best people who have said, have the calls come to the office when you get like that. We can handle it. Pretty sure they see/know there are days when it just isn’t going to benefit anyone to have me talking to customers. The girls are doing as well as they can. Staying busy. Hannah with school/work/boyfriend (yeah, you read that right and dudes like 6’4″. Seriously?) and Haley with school/friends/youth group. They make me proud in so many ways. Hannah came home from a friends church (she went voluntarily, which being the Fred Sanford heathen I am always astounds me) and we talked about the sermon. There was a line in there she wrote down. “If you’re marked with sadness right now, theres more story to tell. It’s the beginning of a beautiful story”. She got upset later that night, so I reminded her of this line. It’s a great line. They both are just starting their story. I’m sure it will turn out well.

For those that would say, you owe us nothing Bob. No I really do. I put out a simple post this morning, about calling Hospice. I got calls/texts/messages from people I hadn’t heard from in years and all my good friends. I got a call from the preschool director at Elizabeths old school early then went by later (and I’m still going to be Santa on friday, it’s needed this year just a little more). She said she had been flooded with calls asking if theres anything anyone can do. The short answer is no. You’ve done enough with just keeping us in your thoughts and prayers and keeping in touch. You’ve done more to lift our spirits by following this nonsense blog. You’ve done enough just randomly calling me and making me laugh at a stupid story or a dick joke. You’ve done enough by showing me that there are a few good people out there still and I think I know them all. I am truly humbled and blessed to have all you savages in our corner. And thats awesome, powerful stuff. I’m going to cut this one a little short as I’ve been alternating between puking and crying all day and a spell is coming on so until later (and I’ll catch you up sooner than later next time), love you guys and big sloppy kisses.

One week in Hell

I’ll jump in right here. And hope you brought your floatation devices, we’ll be in here for a bit.

Whew, been a long week. So I think last time we spoke we just arrived home from the hospital. Well, a few days passed, maybe a week. It was Friday, it had been a pretty good week. So looking forward to the weekend right? In the words of one Lee Corso, not so fast my friend. Elizabeth went to bed with a fever, that progressed to terrible chills. She also had stomach pains which caused her to go to the bathroom. After checking on her I helped her stand up, she went down. After a few minutes I helped her up again, she fell again. Thankfully I was able to grab her. She was completely out of it. Hannah (god bless her) actually made the call (literally and figuratively) to emergency to get an ambulance. Haley went out to make sure they found the house. Once they arrived they wheeled her out and off to the mayo ER. I’ll tell you this, that moment right there took a lot out of me. I know it was tough on Ham and Cheese. About a month ago a customer and I were discussing our situation. He told me you will be surprised at the strength and resolve your kids show. He couldn’t have been more right. To step into action when everything was going to hell then watch as their mom is wheeled off, man that was tough but I couldn’t be more proud of them and thankful they are who they are.

Anyway we got into the ER and admitted around 6 in the morning. Between doctors coming in and getting things handled everywhere else, after 40 hours of being awake (with a two hour “nap’ mixed in. And when I say nap, sleep was hard to come by) the torture rack of a fold out bed felt like a sack of feathers held up by angels. It was magnificent. However the law of diminishing effects would take over and each subsequent night was less and less awesome. The doctors however were stumped. Was it just effects of the new chemo or were other forces at work here. So finally after four days of tests and blood work, we finally got a diagnosis. I got back to the room and Elizabeth pointed at the board and said, this is what I have. Peptostreptococcus.

I’ll repeat that because you probably have the same reaction as I did, Peptostreptococcus.

I laughed because it sounded made up. It apparently is a pretty rare thing to get. Of course it is, why wouldn’t it just follow the M.O. of this whole ordeal. It’s so rare the doctors at this Mayo didn’t know what to do with it so they had to send the samples to Rochester. Awesome. The whole while our heroine kept getting fevers and chills due to the white blood cells rebuilding due to the chemo and fighting it off. After talking to infectious diseases they suggested she take Flagyl for her antibiotic. You may say to yourself, why does that sound familiar. It’s because thats the medicine that sent her to the ER last time looking and feeling like someone going through heroin withdrawal. So naturally we said, no. What else you got. Well there was a pump they could give us and it would be a little bit of work. Whatever it takes, thats fine, we’ll figure it out. So now armed with a diagnosis and treatment we just were waiting for the fevers to subside then we could go home after a solid week at the temple of doom.

Oh, also quick story, on about day five she felt gross from laying in the bed and all so she wanted to take a shower. Now we weren’t expecting resort style accommodations, but damn, at least the shower could work right? Well again, not so fast my friend. The water either was on full blast, skin melting hot, or off. Nothing in between. So I had to fill up a bucket halfway with cold water, grab this nozzle shooting out boiling water, fill it the rest of the way, then pour it over my bride like back in the days of yore before there was indoor plumbing. The nozzle kept flying around so every now and again you’d get blasted by something close to the temperature of molten lava. After the “shower” I told the front desk that somebody should be receiving a strongly worded letter and they may want to send in housekeeping because the bathroom looks like San Marco in Jacksonville after a good rain, flooded and a mess.

So while we were waiting to be released I decided a colonoscopy would be a fine idea (I had it scheduled in advanced). I was actually looking forward to it as that anesthesia is really great stuff and I really could use a good nap. So I do the prep (no problem) and head in the next day to get the pipes cleaned out. They wheel me back, I lay on my side and they shoot me with the goods. I go out like a light.

Fast forward to recovery where I wake up feeling almost hungover. My throat was on fire and I could barely talk. What the hell happened here. The perky blond nurse (whom I’m assuming they bring in because, who is gonna yell at a perky blond) said “oh good, you’re awake. Well we had to cut your procedure a little short. You threw up” OK, and? “Yeah he found a couple of polyps, they’re small and he’ll remove them when you come back to complete the procedure. Oh yeah, you stopped breathing for a bit, so we stopped the procedure”

Uh, good call?

It was weird and Hannah felt the same way, it was like talking to kids who had a party at their parents house and downplayed the size, the cops getting called, the mess that was made, you know. You will only get the information in bits and pieces. I was coming out of an hour and a half surgery that usually takes twenty minutes. So I was in no condition to ask. And my throat was still on fire. After discussing it with a friend we are guessing they jammed a tube down my throat. My jaw on both sides felt like I took a shot from Mike Tyson. Also guessing that I have sleep apnea that caused this. I have had an appointment with a sleep study clinic that has been blown off due to other things but something I really need to get done now I suppose. But not breathing, damn. They sent me home with some antibiotics to ward off pneumonia so it will all work out but still, not breathing huh? Wow.

So we’re all back home. Elizabeth is hurting a little bit and still trying to recover from her hospital visits. They say it takes a week to recover for every day you’re in there. So by my math she should be fine around March. The doctor came in and said she could push back the chemo a few days, so thats nice. Because while the doctors and nurses are fine people, we really don’t like the joint and would rather not be there. But we gotta go so we will suck it up and roll with it. Anyway, I’m gonna go. Keep us in your thoughts, say a prayer, whatever you do. Love you guys and blog at you later. MUAHHHH!!!!

Return of the Dragon

I’ll jump in here,

Well, shit. That sums up the past few days. Just, shit. So Friday was really good. Our heroine was upright, breathing without hurting, unplugged from the unit and headed off to her preschool to see the kids. Her sister drove her there and a fine time was had by all. So we then get to Saturday where, “she felt off”. Mmmkay. Like what? “I don’t know, just off”. OK. Let’s see where that goes. Well it went, you guessed it, to shit. She struggled through Sunday and monday we finally could contact our doctors. They said it was most likely the steroids she was prescribed for her joint pain and energy. I felt terrible as that has been the case before with these and should’ve remembered. I took them one time and as soon as they said that was the problem I told her exactly how she was feeling. Nervous energy, flushed feeling, tired but can’t sleep, all that. So we thought once we cut that, everything should be fine right?

Well we couldn’t have been more wrong. Tuesday, while she felt better from the steroids (or lack thereof) she started to get the pain from the new tumors against the diaphragm. This kept escalating throughout the day until we finally got in touch with pain management. I could go off but I’ll hold back as I was mad. Super pissed. Anyway they told us to head to the ER. Thankfully we got there when the waiting room was empty (more on that later). We got back and it was a madhouse. We got into a room, go settled and (cue the music)

Enter the Dragon.

Our old friend Dr Dragon popped on in. With his ponytail flowing majestically and all that. They asked her what her pain level was after they gave her an IV of dilaudin. It was an eight. AN EIGHT???!!!! Good lord I thought, this ain’t good. They pumped her with more and gave her some anti-psychotic drug that sometimes works. I had never heard of it but Elizabeth had and had a real level of, shall we say, uncomfortableness with taking it. See, she used to work with kids with severe mental issues and they would give whatever this was to them. Anyway, they tried it, it didn’t work, neither of us were really that surprised as was the doctor we saw who admitted us that said, really? Never heard of that one.

Anyway, between all that I went out to my truck to recharge my phone. As I walked out of the back into the waiting room I was greeting by some old dude puking in a bag. I then walked past some catatonic lady caterwauling like something I’ve never heard. I’m guessing thats what you would hear on like the third or fourth level of hell. It was packed like a sardine can full of misery, sickness, and suffering. I felt a twinge of a sore throat just walking through there. When I walked back in there was a lady that looked like she had her arms inside her shirt like she was cold or if you had your hands in the pocket of a sweatshirt. Upon further inspection her arms were out and those were her boobs resting on her thighs. I wanted to grab the old mans bag and puke in there with him. For all I know thats what started him up. After getting back to the room there was some guy who I could only imagine was coughing up his spleen and other organs. It was terrible.

So they admitted her and thats where we’re at today. They’ve plied her with more dilaudin to little or no real effect except the side effects that narcotics have. Surgery is on the agenda tomorrow to deaden the nerve that goes to the tumors that are banging against he diaphragm. There’s no guarantee it will completely work but some is better than none. That and the chemo will start to kill off these new ones and stop all this. But thats a process. Hopefully not long but a process nonetheless. She’s sleeping right now. She looks peaceful. So theres that. And I know she’s in pain, but I’m here to tell you, these fold out beds are modern day torture racks. When I rose like Frankenstein’s monster to go get coffee as I walked out the door one of the nurses actually said “oh that fold out got you honey”. I could do nothing but grimace. Again, I know my bride is in terrible pain but damn, this thing makes sleeping on a sidewalk seem like bags of feathers held up by angels. Come on mayo, step up your game here.

For all that have asked, the girls are doing good. I’m fortunate/blessed to have them standing with me. I’ve also said it before, the guys at work that pick up my slack are phenomenal. For everyone who has asked what they could do I’ll say it again, for right now we’re fine. Just thoughts and calls help to break everything up. We have help we can call if needed. And believe me, we’ll need a lot more before this is wrapped up and we will definitely let you know. Anyway, love you guys and blog at you later. Peace out homey.

A Double shot of thanks

Hey kids, I’ll jump in here.

So a quick update on our heroine. The chemo and steroids seem to be doing their job quicker than expected. She can breathe without pain (for the most part) which is good. She unplugged from the unit today after two days so for the next week and a half she’ll be going acoustic (been waiting all day for that one). I keep telling her that this latest hiccup and the remedy for it is a process, not a quick fix. Her sister Judy has come in for a little bit to hang out. I’m sure that will do her wonders as like I’ve said, as wonderful as I am to be around, I’m sure she’s tired of me. It’s like eating lobster every day or double meat on a sandwich. It’s great at first but after a while, its just too much.

Anyway, this one is going to be quick. I/we just wanted to thank everyone for the support we’ve gotten over this ordeal, especially the last week. You guys have reached out to us when we really needed it. It’s been a roller coaster of a couple of weeks. With all the kind words, calls, emails and just general niceness, you guys hold a special place in my heart that I hope someday to repay. Just sometimes even a quick “hey” call or text out of the blue does wonders. Again, this is going to be quick because I’m not very good at this but love all of you and

Thanks.

Blog at you sooner than later.

Hey Tin Man

Let me jump right on in here.

So we’ll start this one with an update on our heroine. The pain has been terrible since we last spoke. Like, excruciating to watch much less go through kind of bad. So we had a meeting with the doctor/PA today. After going through the symptoms she said the story all adds up to the two new spots they found on the outside of the liver. Remember those, the one the radiologist sort of dismissed? Yeah, those. That apparently even though they’re super small they can rub up against the wrong nerve and send searing pain from the abdomin all the way up the right shoulder. So Dwayne the drain was not the culprit as my Holiday Inn Express level of doctorin’ has concluded. So they switched her chemo meds up to something that would specifically target these tumors. Again, lets be clear, they’re tumors, more on that later. So she gets them and goes home with a pump that infuses her with more chemo for 46 hours. This sounds terrible but its not as bad as one would think with the port plus the fact that we’re only a few hours in and she can actually breathe without pain. Which I’m sure is a relief because, one needs to breathe. And It’ll help with the swallowing and everything else as well. They also prescribed a steroid that will act as an anti-inflammatory and should help with a lot of other stuff (energy/appetite?who knows). If things get really dicey again they could do something that I could only describe as blocking the nerve so it doesn’t radiate pain. But for now, things are fine. The new chemo was a little scary though as when the nurse injected the one dose, it seemed like they mixed up FU-5 (the chemo med, I laughed a little to as it’ll be easy to remember as its one of my favorite, go to phrases) and instead administered high grade heroin as her speech immediately slurred. She assured us she’d seen that before and not to worry. OK. Easier to say than to do. But everything seems to be ok. Still a little light in the head but ok nonetheless.

So I’ll go to my review of the Mayo Clinic breakfast selection today. I thought about eating light with some fruit, maybe cottage cheese and/or oatmeal. I also considered an omelet as they are always a satisfying choice. However, I was tired. And fat boy needed some comfort food. So I went in. I asked the woman behind the counter for eggs, the potatoes, a link of andouille sausage and a biscuit. This meal turned out to be about as comfortable as a prison cot or a fold out couch. The eggs had all the taste of a dry sponge. The potatoes were so cold they were almost refreshing. No matter how much ketchup, vinegar, and hot sauce were applied they were terrible at best. The sausage looked and tasted like something I’d left on the grill from the other night when I got hammered and passed out and pulled off in the morning. The biscuit was an insult to biscuitry. It was not fluffy, nor moist even though it was undercooked in the middle yet mortar-like with the crust. I would’ve rather eaten at the Golden Corral with a group of fourth graders with colds that are below the sneeze guard. One out of ten bacon slices.

While driving up though I heard this song “Tin Man” by Miranda lambert. I’m not a country music fan as most of you know. I’ll listen to it with Elizabeth as she is but its not my genre of choice. However this song, I dont know if its a good song or a song that hit me at the right time. Like when you’re starving in Europe a McDonald’s Filet-o-fish is five star dining but when you get a full belly stateside, its barely edible (experience guys). But it went into how lucky the Tinman in the wizard of Oz was because he didn’t have a heart to break. It scratched me right where I itched. I got out of the truck with tears in my eyes, which the past couple of days has been the norm. But man, how I identified with that song. But I have a heart, and as sappy as it sounds, half of it is Elizabeths. And its been breaking the last few days. When we were with the doctor/PA, and she started crying with the news of the two new tumors, man, that sucked. Bad. We’ve done it a few times and it always sucks each and every time just as bad as the last one. But along with it there was a little hope. They can fix this problem I think. I’m sure of it. So, I’m cutting and running from today as between this, the Vegas shootings, and the passing/nonpassing of Tom Petty, this is a say I’d just soon forget. I wont but you know. Anyway, love you guys and blog at you latter. Big Hugs.