So hey babe, it’s our anniversary. The 21st one. I still remember the day we met, our first date, the day I proposed, all that. This was our day. Still is. I’ve thought a lot about you today without remembering the last year almost at all, well, except vowapalooza. Only the good times and there were a ton. Whats the old saying, don’t cry because its over but smile because it happened? I’ve honestly smiled a lot today. Physically you aren’t here to eat crappy Pizza Hut pizza like we did on our wedding night and every year since but I will, knowing you’re around somewhere, so I ordered one with just cheese and pepperoni because I know you hated the other stuff. I did get onions and the fish because, well, you’d complain that I stink but would get over it. It’s the only day a year Pizza Hut actually doesn’t taste like garbage in a bucket. I know you told me to keep going and be happy and I’m trying. Sometimes I think I’m succeeding. The girls are helping me out (as I hope I am them) and I’ve got great friends, really, they’re all the best, but…..
Damn, I still miss you.
I miss your voice. I miss you coming in and hugging me when I cook. I miss you saying “thank you” after every meal. I miss sitting on the couch watching Survivor with your head on my lap. I miss…..all of it. I miss you pushing me in the middle of the night when I snore (I tried the cpap machine, I really did, but it wouldn’t work, you would’ve hated the noise too). I miss waking you up in the morning and getting ready with you, laughing about nonsense on the morning news. I miss riding anywhere with you driving and thinking, wow, I’ve been less scared on roller coasters. I miss you and Haley getting into it about her clothes (okay, thats a stretch, I’d like to hear it again but to say “miss it” is really a lot). I miss you, a lot. We still tell stories about you and talk about you all the time. As great as I think I’m doing now I’d trade it all in a minute to see what would’ve happened with us. And like I know, we talked about it, but you took a piece of me with you that I’m not sure I’ll ever get back. I was looking for something the other night and stumbled over a ton of pictures under the bed that after ten minutes just had to put back. I’ll probably drag them out at some point tonight. I know you’re watching us and thinking that this three legged table is complete nonsense, there’s still four, there always will be. I know this because we’re all still vertical and doing as good as possible. Hannah is absolutely a force of nature and Haley is coming into her own and really figuring things out better than I even expected. I’m trying to get on with life and keep moving forward. But did you ever hear how when people lose a limb theres still some weird twitch or feeling where its supposed to be? Yeah, that, all the time. So anyway, I’m going to cry over the last piece of thin crust, probably have another (few) beer and one more thing, and I know what I’ll hear in my head after I say it…..
Love you more.
Because I wanted to go long………
So we all know, its been a long roller coaster of a year. But at the end of last year my parents came to see me and the fam after christmas. We went to the deep end of the pool with everything that was on my mind. You know, usual stuff a guy in his late forties thinks about. How in the hell am I going to move on with my life, what am I going to do with myself after all is said and done, where is my backscratcher, all off it. It was put in my head that after Ham and cheese split and move on with their lives, thats when it’ll set in. So I’m singing the blues. As I’m really thinking wow, I’m in a bad spot here my dad looks at me and says something I’ll never forget……..
I’m not worried about you.
At that moment I thought, wow, well that makes one of us. And I thought for a split second, Really? Seriously, not at all? What the (comment censored) are you talking about? Because I was.
He then went on to explain. Do you remember where you were 10 years ago? 5 years ago? At every point you can look at think, it cant get much worse. And at that moment, things get better. And the stuff you remember as terrible you stand back and laugh at it and have moved on. Life moves on. I explained that seriously, right now is defcon 5, the button is gonna get hit, everything is gonna get burnt to toast. Scorched earth and all that.
“You’ll be alright. Trust me.”
He was right there by my side til the end. Even though I didn’t think I wanted or needed him there, there he was. I’d wake up, stumble out to the waiting room, there he was. We walked around the hospital, got chased by an angry goose, but he was there. So yeah, there was that. But back to the story about “I’m not worried about you”……….
As much as you dont want to admit that experience means everything (and ham and cheese will never say this), your dad is always right. There’s been some space sense that conversation. And a lot has gone down. But great googley moogley he was right. There’s a light at the end of the tunnel. I’ve had three people look at me in the past few days that say theres a bounce in your step, a light in your eye. Something we haven’t seen in a year or so. I think though about that conversation with my parents a lot. I can remember him saying that. I can actually still place my feet on the square foot of earth I stood upon hearing that. I can remember the feeling when he said it and its a complete 180 degree turn as to how I feel now and thinking wow, you were right. I know without a shadow of a doubt I wouldn’t be the person I am today without him sticking with me and propping me up when everything was going to hell. He’s told me, I dont know how you do it. Well, its easy when you have the best Dad ever to push you in the right direction. So happy Father’s Day. To all you lunatics who keep the ball rolling and to my dad, a guy who I will gladly concede the title of the baddest savage on the planet. Love you. That’s all.
Back to the jokes about Uranus and farting now, immediately.
Hey Elizabeth, its your boy.
So, its been what, two and a half months? I’m pretty sure wherever you are you’re running the show by now. Telling whomever was in charge, thats nice, but let me show you this. Anyway, just writing you first to let you know I haven’t broken the kids yet. We’re actually doing pretty good all things considered. Still learning how to be a single dad but I think I’m getting the rhythm of this. They both got sick the last couple of weeks and nobody went to the hospital, just the minute clinic. I’m sure you’ve been looking in on us (more on that later) but let me run over things so in case you got busy you’ll know what’s doing.
First, Hannah. Look, she’s still amazing. Her and Carson just had their six month “anniversary” or whatever they called it. They’re cute together. We always laugh that he’s just a taller version of me. With better hair and not quite with my barrel like physique but he’s a super guy. I met his parents as well. Wonderful people. Went to school in Gainesville. Hannah said from the first time “you guys were like old friends”. We’re going to the Pixies show in a couple of weeks so they’re my kind of people. he makes his own beer (I can see you rolling your eyes, stop it). And his mom is super cool as well. She couldn’t have picked better people. You’d like them. She’s turning 19 in a few weeks and as usual “wants nothing”. I have an idea but I don’t know.
And Haley, look, theres been hiccups but I think we’re turning the corner. I actually went to a parent/teacher conference where I’ve never felt like so much a fossil. Her English teacher graduated from high school 10 years ago. Let me repeat 10 YEARS AGO!!!!!!! I’ve got t-shirts older than him. Seriously, he also had a man bun. But they all said she was really smart and doing well. And look, with everything going on truthfully, she did pretty good. And is doing great at dance. Her and her friend Anna are lead dancers on the school team and shes just kicking ass at Marks again. She found her love for it once more, I know you were concerned. But everything we did turned out right for that. We have her recital Monday coming up. We can’t wait. It’ll be a little bittersweet for obvious reasons (Hannah and I are going to be a frigging mess) but she’s so great at it. I’ll remember flowers, I promise. But I still see so much of you in both of them. From their beauty to their independence to their humor, I’m thankful for that. They took the best from you.
As for me I’m getting by pretty good. Our friends have kept me so busy to the point my therapist said, you can say no. Oh yeah, I’m going to a therapist. There’s good and there’s bad but on the whole she has helped. Not gonna lie, that first couple of weeks were tough. Not the going to sleep which everyone said but waking up. The getting out of bed to face another day. But I took a page from your playbook. To just keep doing. Because people are counting on me. From the guys I need to find jobs for to Hannah and Haley. It’s hard sometimes but I know I can’t stop. I know we talked about you wanting me to be happy. It’s coming around. I’m sure you saw the couple of fastballs the universe threw at my head. That was awesomely craptastic but I think I outlasted the beating and am getting back up to throw haymakers. And I reconnected with someone who honestly makes me smile every time talk to or am around her. It hasn’t been long but I haven’t genuinely smiled like this in months. On the subject of universal cosmic circumstance she sent a picture out the other day she took that had the strangest connection to you. Pretty sure you had a hand in it because it was uber-pintresty. I think though that the mourning has subsided a bit. Not the memories (I still tell stories about you) and still use the terms we and our. But our friends get it. Not sure if that will ever go away. Probably not but I think we talked about it once with about some friend of yours, eventually, you’re/I’m still alive and you have to continue to live. So I’m trying and its hard but I think I’m doing a decent enough job of not tripping over myself.
So I know one of your last wishes was not to be forgotten. I think we’re getting to the point where we talk about you and laugh a lot. Remember those pictures of the girls on the mantle that you said eventually we’d change out? Yeah, I dont remember that either but Haley did the other night. Now she doesn’t want to change them. And I can’t speak for the girls but theres little hints and clues you throw out to make sure we know you’re still around. Sometimes its pretty bold but sometimes very subtle. But you know what you’re doing, and whatever advice I would have would just make it worse. We’re headed to New York during Christmas this year. I swear we won’t get into any trouble and we’ll make “good choices”. Well mostly good, some might be just plain fun. Somewhere we’ll need to find a place to serve a slider and a Malibu and orange. We still think of you, a lot. But we’re doing as good as we can. There’s been some stumbles and missteps but we’re still learning this new normal.
I haven’t been able to write without you here so excuse me if this letter rambled a little. I also don’t think I have a stamp that the USPS will deliver to parts unknown so I’ll just leave this out in the ether to find you. I’ll write you from time to time and we’ll see where this goes. A next chapter to the blog if you will. Just to keep up with our nonsense. The last hashtag #uphillbattle is officially in the books. We’ll start using #threeleggedtable for this installment. So I’ll end it here for now as our good friend Mike drove us into a cow poop filled creek with a golf cart (don’t ask, it was just typical what we do, we’re not that smart. There were about 104 things that could’ve gone wrong so getting stuck wasn’t a huge problem.) and I need a shower, but we’ll keep in touch. Still love you more.
Let me jump in one last time.
First off I had no plans for one more. Our heroine passed peacefully. She waited for ham, cheese, and I to leave the room. Her brother Chris was there at the final moments. I’ll never be able to thank him enough for that. There’s a lot about the moments I’ll keep to ourselves. While we shared a lot, that’s something I don’t have the words or thoughts right now. So…..
Quick backstory, Elizabeth used to love ghost hunters, ghost adventures, ghosts in cars getting coffee, all that. The celebrity mediums, the noncelebrity mediums. She loved it. As did I because I made fun of it the whole time. Ghosts were complete nonsense. How in the world could any sane, reasonable person believe in ghosts.
Fast forward to the roadtrip. Ham, cheese and I split for Clearwater beach just to get out of town. A change of venue. Relax and generally get a breath. So we wake up the first morning. When I say we, I mean me because teenagers wake up at the crack of noon. So I stumble out for a cup of crappy hotel brew. There’s some old guys (80+) celebrating a birthday with a bottle of Jameson. (I wanted to party with those guys but I would’ve brought their cool quotient down a notch). I noticed Taylor Swift’s “shake it off” playing. Our buddy Wayne and Elizabeth were drunk as rats dancing in front of the Hard Rock in Vegas to this song and it never fails to bring a smile to my face. Ok. Mild coincidence. We then set out to grab a t-shirt and other nonsense from the trip. We’re in a surf store. We hear Fergie from the black eyed peas. Hannah taps me, we used to hear this every day going to school, what are the odds we hear it at a surf store.
Yeah, what are the odds
So we are now about to leave to go see my uncle Richard and aunt Terri and Jenna. While waiting for the valet another song is blasting through the hallway speakers. Some Amy Grant song. Don’t ask me the name cause that ain’t quite my genre. Nonetheless, Amy f’n Grant? She loved Amy Grant. I sat through a Christmas concert of Amy Grant and would gladly do it again but still….
This was getting weird, even ham and cheese though as much.
So we start to driving. Years ago a commercial came on the tv at a restaurant with songs of the 70’s. Olivia Newton John came on and Elizabeth started singing this song that I thought she made up, “have you ever been mellow”. We get in the truck. We change the station and what comes on, right from the start….
If you guessed “master of puppets” you’re wrong.
Seriously? ONJ? Have you ever been mellow? ArWe all screamed “seriously!!!!” Are you f’n kidding? I looked up. “Well played ma’am”. Hannah then hit a button. Turned it off. We turned it right back…..
The song was gone.
This was not pandora, nor Spotify. Sirius XM is on a stream. Why did it disappear? What the blue hell is going on. We all felt something. Hay was shocked. Hannah immediately started sobbing. I smiled a huge smile because she’s still here in some way watching us.
I’m sure she laughed. Thank god we have someone watching over us with skin in the game.
At the end of her remembrance from me the other day I said something a buddy of mine texted to me right after she passed. I think about it a lot as the past few days I really feel she’s still with us. With all of us. So look, in the end I truly love all of you. And the three of us will be fine in the end. I’ll keep writing. Maybe I’ll start a new one about a dad trying to raise two lunatic daughters. Complete fiction but I’ll come up with something I’m sure. Thanks for the following.
Someday you will read or hear that Elizabeth Reeves is dead. Don’t you believe a word of it. She shall be more alive than I am now. She will just have changed her address. She will have gone into the presence of God.
I’m sitting here next to you. Quietly. You’re on meds so you’ll never read this but right now it’s either write or stare at the wall. And I know you’d get on to me for pouring a ridiculous amount of rum into what’s left of my coffee at 1:30 on a Wednesday afternoon. But all things being equal I think the situation warrants it. I’ve already told you but wanted to reiterate that Ham, cheese and I will be ok. You’ve given me two great crutches on which to lean on and I hope and pray (yeah, I actually prayed) that I’m the same for them. Yeah, it’ll be a little different. We’ll still tell Haley to quiet down whenever Hannah and I get stupid and she makes the slightest peep. And I’ll make sure Hannah wears better fitting shorts and will constantly remind her not to say the first thing she thinks of. And I swear I’ll “make good decisions” whenever I go to a concert or a football game with my “boyfriends” as you called them. It won’t be the same but we’ll be alright. We’ll still go to Jimmys for thanksgiving and Easter. Christmas though we hatched a plan that instead of gifts we’re just going on a trip from now on. This year we’re doing it for Christmas but in the future may sit in the lounge drinking egg nog without the nog (re: bourbon) and plan an adventure. And don’t worry, you’ll never, ever be forgotten. We’ll order a Malibu and orange juice and plain, dry, cheeseburger wherever we go and choke down a couple of bites as an appetizer. Think of it as a traveling communion.
I can’t think though of a better adventure or a better partner to have run with the last 20 years. We had some great times. Jamaica, Mexico, Vegas, that really crappy hotel in Tampa we stayed at because I wanted to go to a rays baseball game. I know you really didn’t care to go but neither did I really want to go to an Amy Grant concert. The first time we went to Disney with each of the girls. The recitals and programs. I’ll remember it all forever. As will the girls. You’re like a bad stain on a white shirt. Even if we wanted to forget you we never could. Nor would we want to. Because it’s our favorite shirt. And we’ll wear it out. Even with the holes and stains and ill fitting collar that has worn out it’s welcome, it’ll still get worn. And you know me with old shirts. We had a great ride you and me.
As far as this last year, I told you at the jump, we’re a team. We’ll fight this thing to the bitter end together. We had help from friends and family and my god we needed it. I’m not sure where we’d be had we did like we said one day in a fit with everyone and said f’ it, let’s move to arizona. Hindsight being 20/20 definitely for the best we stayed. And we have the best group around us anyone could ask for. And they’ll be here for as long as they can stand us. We, well mostly you, gave it hell and we left no cards on the table. As you know I like to bring it back to sports and we were facing Michael Jordan’s Bulls. And we went down swinging. So I’ll leave it with this. Don’t be scared. At all. And I won’t be. Because I and the girls will thankfully have somebody watching over us with a little bit of skin in the game. And lastly……
I love you more.
So I left the house around 10am on Thursday. Just checked up on our heroine between looking at jobs. She said she felt a little off but to me, she sounded and looked pretty good. The hospice nurses/social workers had been there for the majority of the week and everything seemed to be fine. We’re supposed to have good days ahead right? That was the plan. Meds has been decreased to a more suitable level, we were going to get the drain tube so they could relieve the pressure of the always brewing gut stew at home. Things were starting to come together. The nurse was coming by later to drop off some DNR paperwork for us to have onhand if/when the worst happens. But we aren’t going to need that for a while. So off I went to st augustine to look at a job. Well…….
Elizabeth calls and puts me on speaker with Barbara the nurse. She was super nauseous, weak, hurting, all that. Ok. We were going to the inpatient hospice wing at the hospital to get this under control. Elizabeth met this decision with no resistance. We stayed the night and her assites/gut stew was draining from the hole where Dwayne the drain was inserted pretty good. When it has no place to go, it’ll just find somewhere and show itself the door. So the nurses here (whom I cannot say enough good things about) the next day began to see if they could move up getting the drain tube put in from Tuesday to Monday. That got done (more on that later). We spoke with the doctor between the parade of family and friends coming by for support. It’s hard for me to even type this, things ain’t good kids. There were some hard truths that we knew but out loud they were crushing. She doesn’t want to be in pain anymore and who can blame her. She doesn’t want myself or ham and cheese to see her this way, struggling. But we pressed on. I crawled into bed and took a nap with her. She’s lost enough weight where I could slide my giant tuckus right beside her in this small bed. I left and came back and between then she had decided that Monday was no good, that with our history of things and procedures at Mayo that she wanted to be certain exactly what was happening. So I agreed. While she needs it later it’s ultimately her call. So after all the family and friends left ham and cheese came in and we all stayed the night in the room. Today has been quiet. The girls went home to clean up and Hannah is going to work then to her boyfriend Carsons house. He’s been here with her the majority of the time and even though it’s only been a short time I love that dude. No matter where the road goes for him and Hannah he’ll always have a special place in my heart for being there for her (and his family as well). Haley is going to stay at a friends house so I’ll have the air mattress to myself.
So now the tough part. She’s not really eating. It was all we could do to get her in and out of the shower today. She has no strength. I know that she “wants all the info” before getting the tube but that may be her way of saying fuck it. So we sit here. Not feeling good about anything. Ham and cheese just came back by and we had some laughs. I’ve told friends that came by that were upset leaving, we’ll be alright. And we will. I had a pretty good partner for twenty years to raise two awesome human beings. Am I scared? Yeah. But I know I’ve got them to lean on as they do me. I just deleted a sentence as I wanted to be positive and put a good spin to end this, but truthfully it sounded ridiculous sitting at the end of the hallway on the fifth floor of hospice. So I’ll just leave this here and hope we can get out and go home together for one last run. Love all you waveriders, prayer warriors and savages. It’s been a good uphill battle with you guys behind us. Peace and love. Later
I’ll jump in right here
So first, the texts, emails, messages, and support we’ve received since letting everyone know about the decision is truly heartwarming. I’m actually speechless and don’t know what to say so just, thank you. Ham and I were talking the other day and she brought up something a friend of ours, Beth Harvey said at the beginning of this. She had at one time tumors all over her body but beat the odds and cancer and is still going today. Marvelous person she is. Anyway she said, “you give this disease a year then you take your life back”. Hannah remembered this as I’m positive that whatever brain cell this nugget was locked in my head had been drowned by rum. So it’s just funny that’s what our heroine has done here. Taking it back. Not going to let the treatments or disease stop her from living. In the past two days she’s been out more than in the past two months. We’ll keep going as like I said, there’s more stories to be told. Hopefully they’ll be a little more funny.
Anyway it got me thinking about the first blog post I made a year ago. When we were scared but still thought everything would turn out fine. Interesting how a year changes you. So from the vault, the start of the uphill battle.
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.
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?
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.
Get me a towel, I’m jumping in.
Well guys, today marks a year since Larry the tumor entered our lives. Can’t say this is a happy anniversary or anything we really wanted to remember but here we are. Last we spoke our heroine was getting the morphine pump removed due to a staff infection. Well, that was just the beginning of the nonsense. She began to develop fluid in her abdomen. We’d seen it before but thought it was from the surgery or the pump. Turns out it wasn’t. It’s a result of the liver going south. However right after all she went through with the pump they decided to stick a tube from her nose to her stomach, thinking there was a blockage. Well, there wasn’t. So they had to stick a needle in her side to draw it out. All five and a half liters. That’s right. A gallon and a half of water was taken out from her belly. About 14 pounds of belly stew. A couple days later they pulled three and a half liters. So in a couple of days, and I didn’t go to math school so I might have this wrong, that’s nine liters total (plus another three today but that’s another thing). If you’ve seen her, she doesn’t have anywhere to store five and a half liters. Now if you’re going to ask where this fluid comes from or why it collects, you can stop that. We know it’s because the liver is strained/damaged but that’s the extent of our knowledge. We can’t really get a straight answer. I know a lot of this sounds like we’re crapping all over Mayo. Granted, we’ve had some mind boggling experiences. But there have been two doctors and a PA there who could not have been better. Dr’s Ricard and Frey and Ricards PA Julie have truly been phenomenal through this whole thing. That said and this comes as no shock to anyone close to the situation……
She’s stopping chemo.
It happened when we were watching this video of a second tube that was going to be installed so we could extract the gut stew at home. She wanted no part of it. She had the thousand yard stare while staring at the video detailing the reverse vacuum technology. She was getting taken back and just said no, let’s wait. The next day we talked. She’s just tired of being poked, prodded, shot with poison, and generally everything else. So she’s cutting bait. We’re hoping she’ll feel better stopping the treatments, because all they’ve done to this point is make her feel like shit. She told Dr Frey the news today as she was getting drained (we’ll still have to do that plus Pain “management”). He’s going to replace the stints and pull Dwayne the drain. We’re telling the rest of them next week. So, yeah.
So we’re choosing not to look at this as a bad thing. While we’re of course upset it’s somewhat of a relief. Elizabeth feels like a huge weight has been lifted off her shoulders as I’m sure it’s been on her mind for a while, as it has mine. Hopefully she’ll feel better for a short time so we can squeeze out some living and as cheese so eloquently put it “take some pictures and make some memories”. She’s put up a hell of a fight and she’s tired. We’ve put in the call to hospice for help with things. That’ll actually be pretty tough for me to ease up on the reins a bit. I know Elizabeth posted on Facebook earlier but I’d like to share her sentiment. Everyone that’s been behind us through this journey and rode the wave, thank you. And for those that have stepped up when we needed you, whether we wanted it or not, from the bottom of our hearts, a special thanks. Love you guys and blog at you later.
This story ain’t over yet.
I’m jumping in.
These were my first thoughts upon waking up this morning. I’ve been trying to wake up every morning this year and immediately think of three things I’m grateful for. I realize even though we’re going through this nightmare I still have a lot that has broken right for me in 46 years. Sometimes it may even involve some of you reading this, even the sketchier folk. But today I woke up with one long obscenity.
Well shit. Then there were several f bombs, lords name in vain, various body part words used as nouns, verbs, adjectives, and adverbs that I won’t go to in here as I may get kicked off this forum for how vile they actually were. I believe I even made up some new offensive words using combinations of the three that offended even me. Because you see, We’re taking the pump out today. I say the pump because we never even got a chance to name it some catchy name like Larry or Dwayne. So how did we arrive here? Let’s dig in shall we?
Thursday night our heroine could not sleep (and by proxy, me either). She was having terrible pain in her back where the incision was. It was ironic that the doctor who installed it called earlier that day to see how she was doing. The incision, in my humble, no medical training ever opinion was that it looked good. The last time we changed the dressing I thought it looked good. However I got home thursday to Elizabeth in pain and still having trouble with the bathroom. I’d get into the details but it was pretty icky and nobody wants to hear it. So Friday we had a meeting with pain “management”. I will now use quotes with pain “management” because besides just more pills, theres not a whole lot of management involved. So we went to pain “management” with Elizabeth still in pain. Upon arrival the PA lowered the amount of juice coming from the pump per the urologist (as he had seen the pump giving the bowels/everything that makes you pee, problems). They were puzzled as they had “never seen this have this bad a reaction before”. First time for everything right? You probably should document this somewhere right beside the Bigfoot I saw in the parking lot walking in. Never saw that before either but there it was in all its glory (full disclosure, it might have been a possum). So after leaving pain “management” where the answer was more pills, we went to neurosurgery as I called earlier basically demanding someone take a look at her back. The nurse walked in, undid the dressing and her look said a thousand words. Her reaction said more. “Go get doctor so and such” she said to the PA. “He’s in surgery” “Well get doctor whatshisname” “He’s doing (whatever)”. “Well just go get somebody”. She said if it were up to her Elizabeth would be admitted quick, fast, and in a hurry. To the right of the incision it resembled a swollen big toe. However the doctor that came in thought “differently”. It just looks like a hematoma he said. OK, wait. I went and looked and it didn’t look like that two days ago. Again let me stress, I have zero medical background except my watching Grays Anatomy with my bride. Can a hematoma develop three weeks after surgery? And still, I would get it hurting but not a 10 out of 10 pain to where she cant adjust herself in a wheelchair. That’s crazy. I as well as the nurse kept reiterating man, I don’t know, it seems pretty bad. But this guy just dug his heels in and he was right. He also wanted to argue with me about Elizabeth taking Tylenol v Ibuprofen. He was adamant in telling me that I had it wrong. That she should be taking Ibuprofen instead of Tylenol because of the liver or kidneys or something. After the third time I just said, take it up with Mody. That’s what he said. So thats that. He was also very concerned about the ink on his pants as well. So he ordered an MRI (keep in mind this was about 2:30 on a friday, that will come into play later). We went down for the prerequisite blood work. Then to the second floor for the mri where “they would try to squeeze us in”. Well, after several heated discussions with the schedulers (who I know, it wasn’t their fault) the lead guy came and talked to me. One, they couldn’t schedule until they had certification from the insurance. Completely understand but it’s almost 4pm on a Friday, pretty sure that ain’t happening. Two, last call for scans/mri is 3:30. Third the last MRI is 6pm. So we both came to the conclusion that it wasn’t happening today. He did suggest the ER and that I felt with chemo and everything (again, zero medical training) wasn’t an option. So we went home.
That’s right, still in terrible pain, nothing resolved, Going home. Awesome. Thanks for the help guys. I did speak with the nurse who had been trying to facilitate this (and shes one of the good ones) face to face and she looked like she wanted to say something but couldn’t. So home we went. Well, for at least four hours.
I had run Haley to her surprise birthday party then went to pick up meds and a small bite to eat. Elizabeth called and said she had a 103 degree temp. We made a call and off to the ER (where we didn’t want to be in the first place) and they looked at her. They gave her fentynal and doped her up pretty good. Well good enough to lower the pain from 10 to 8. Pretty much everyone was called in and at around 2:30 the doctor came in and said its a likely infection. Ok, so somebody is actually thinking hmmmm, I think with lowered blood pressure and really low white blood counts this might be something a little more serious than a hematoma. Again, let me stress, the only medical experience I have is watching Chicago Med but I’ve been on this ride before and had to call the ambulance. That was an infection/virus and I’m pretty sure this is the same. So we got into a room at 4am.
They decided to drain the back. I believe the medical term is “aspirate”. I say that stressing again I am no doctor but am now an amateur physician with all the names of all the drugs, old and new, stored in my head. The same doctor from the other day came in. “So no MRI?” I just said no. I didn’t feel like getting into it with him. I was way too tired and I figured, if there are only two doctors, two players on the bench this weekend, thats who you go with.
Well, that “not getting into it” lasted until they were about to drain her. He was still on the hematoma thing. “Oh it looks better” Seriously dude, and I’m thinking in my head (pardon my French) WHAT THE FUCK ARE YOU LOOKING AT HERE???!!!!! He then started to go on about some ste fluid or something. “What’s STE?” I asked in my best George Clooney on ER voice. He rambled on about something until I asked again, yeah, but what is STE? He then did it again until both I and my mom just yelled at him, what does STE mean? What do the initials mean? What are you talking about?! It’s a spinal fluid. OK, thanks for the info. Nonetheless, Elizabeth didn’t want him in there. Didn’t want him anywhere around. I really didn’t want him in the same zip code. So the other doctor extracted the fluid. She was really good but there wasn’t anything coming out. Pretty sure Dr Do-nothing would’ve bagged it after the third try but she kept working. Thankfully they extracted a good bit to get a bead on. Then the dope said no, lets hold off on the antibiotics. Why? Dont know, I design scaffold but he said this and I thought, dude. I think the nurse on call may have just ordered them anyway as they magically showed up. Or she realized how livid we were toward Do-nothing and got others involved. He left and still was sure that it was nothing.
Nothing until it came back a couple of hours later. The pump is getting taken out. There’s infection all in there. So its getting pulled as I write this. Do-nothing came in and I finally got him to say, yes, its an infection. I wanted to hear him say it twice so I asked him again. Just so he could know how wrong he was from the jump and the terrible disservice he gave us. But another surgery, followed by 6 weeks of antibiotics. The pump was a game changer it just changed it for the worse. The pain “management” doctor who sold us on it from the jump came in to read the pump. As he stood there with his machine I asked him “why would you do that? It’s infected and they’re taking it out?” He seemed a little dejected by the news as I glared at him. Look, I almost don’t blame him (except the fact he undersold a lot of the post op stuff). Those who know me know I’m a big sports fan. My love for my family and friends is really only a notch or two above my love for the Florida Gators. Whenever a coach goes for a big, unexpected play like an onside kick or something crazy, if it works, they’re a genius. If it doesn’t they’re a dope. It’s sometimes the right call but just poor execution. This is a case of that. I think even with hindsight being 20/20 we had to try this. Unfortunately it just didn’t work out. The execution was terrible. So I sit and wait. I’ll update everyone later on how its going. Until then love you guys, and blog at you later. #uphillbattle