The execution was poor

I’m jumping in.

Well, shit.

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

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Side splitting fun

I’ll jump right in here

So there was a slight hiccup this week. We entered into the weekend and got through it pretty well. Our heroine got out three separate times, one lunch with myself and ham and cheese, the second, to the mall to get something, then Sunday out with Hannah to target to ride around on the little scooters that they apparently never charge up. So that was good. The pain seemed to be easing down a bit as well. Still taking a lot of dilaudin and they bumped up the morphine pump but everything was going fine. So monday we arrive, get blood taken, go to lunch (been a while since we have by ourselves) and headed back for a nice late afternoon dose of chemo. She still was having trouble going to the bathroom though. The doctor got the meeting with the urologist changed to tomorrow so that was good. Anyway after chemo I took her to get her hair washed and went home. While she was getting changed I looked at her shirt.

What the f is that?!!

There was a yellow stain on her shirt that went through another shirt. We looked at her side where Dwayne the drain resides and it looked like a quart of penzoil had leaked out and someone tried to clean it up with a box of tissues. So get back in the truck and head back to the temple to the ER. I dropped her off and parked the truck. Upon entering I see Elizabeth with a mask on. I also see this joint filled up like I’ve never seen it and everyone wearing masks. I by no means am a germaphobe. I have conditioned my body after several years of rum consumption to withstand pretty much anything. Some people treat their body like a temple, I treat mine like a tent. Anyway I felt like I contracted pinkeye, gangrene, and some other unspeakable disease just sitting there. No place for a cancer/chemo patient. So I called. The doctor on call told us to go home, flush the tube and hook up the bag. That as terrible as it looked, it shouldn’t be anything to worry about. To come by tomorrow and they would squeeze us in. We went in today and they fixed it. It was just blocked (thankfully) and an easy fix. The nurses were super kind as I sat in the waiting room our heroine just broke down and three of them comforted her. I know I’ll bitch a lot (earlier and later) about the confusion and other nonsense, but the nurses and a few of the doctors have been outstanding and I can’t thank them enough for their kindness and empathy.

Urology was no bueno. She went to the bathroom and still had double the urine in her than they like. The urologist told her that it could be the pump thats the problem. That they may have to take it down a notch. Which while it makes complete sense that the morphine could be deadening that nerve, I mean seriously? So the pain pump is causing problems and if we decrease it there might be pain? To quote an earlier blog, we’re chasing our tails here. If its not one thing its another and we need to do this because of this previous decision we made that didn’t really work. We’ve openly told them, we’re frustrated. Now we have another member on our “team” who is pointing fingers saying, well, go talk to them. Elizabeth wanted to see if we could get them all in a room and on the same page. I seriously doubt that would ever happen. It would be nice but it’ll never, ever happen.

So onto this episode of “What can’t Bob bitch about”. Today we have meditation rooms. Now look, I found a “meditation room” at mayo. How could I possibly bitch about a quiet room. Strap on your seatbelts kids, lets go for a ride. I found this room at the beginning of the year while wandering around during the morphine pump install. Beautiful room. Marble floors, fountain trickling by the entrance, completely quiet. Well, not completely quiet, they have a light bulb that is going bad and pinging like a drunk uncle banging on a champagne glass because he wants to make a toast at a wedding. But after a while it sort of adds to the ambiance. The first time was nice. The second time they have a piano outside and some old guy playing at random times a day. Usually he cranks up at lunch. You can hear him through the glass. When you are sitting and trying to wash away burning rage and feel a little taste of zen, the last thing you need is to sing “just the way you are” in your head. It just doesn’t work. But I got through it. Well today I had some time and I figured I’d get a quick 20 minutes. He was already playing when I walked in. Today though he had some other old geezer there singing with him. Well, hopefully he”ll be done soon I thought. Well he was but not before he channeled his inner Liberace and tickled the keys in runs up and down the ivories in a grand finale for the ages. The crowd went wild. Honestly, I’m sure he took a bow with all the applause. I was left wondering what’s next? A New Orleans big brass band? Slayer on their retirement tour?

So he was done, I focused again and went into my head. In comes this couple. Just talking. I was a little hidden behind this giant table so I assumed they just didn’t see me. I cleared my throat. The guy looked at me and quieted down just a bit. They sat down and about every few minutes or so, talked just loud enough to be annoying. I held my tongue. Until the very end, thankfully with a minute to go, The woman opens up her plastic box of a sandwich a starts eating, loudly. I grabbed my phone, walked past, gave them the stink eye, because I was at peace and didn’t want to ruin the mood, and split. They looked shocked. Like they thought it was a cafeteria or something.

Either way, its been a heck of a week. I think we’re all about at the end of our rope with this pain and frustration. Eventually its going to bubble over on one of these doctors and it wont be pretty. Like I’ve said in the past, they do a really good job for the most part. And I realize thats why the correct term is “practicing medicine” because they’re never exactly sure what they are doing. But for crying out loud for a part that was supposed to be a “game changer” it sure has, but for the worse it seems. So until next week, love you guys and blog at you later.

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!!!!!!

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!!!!!!