Thursday, November 17, 2011

The Stubborn Pirate

As most of you know, I went in for surgery last Tuesday after returning home from the Conference and now that I've had some time to let everything sink in I thought that I would write about it. I warn you in advance that this is a long one and you may need to get a cup of coffee/tea/hot chocolate before you sit down in front of the computer to read this. Get yourself comfy... Here goes..... I was admitted into the hospital at 11:00 Tuesday morning which was so nice - not too early. My surgery was scheduled for 1:00 so I had lots of time to get into my gown, get my IV put in and get ready for the OR. Jeff and my mom sat and visited with me during this time. Jeff had me cracking up like he usually does under a fairly stressful situation. This is how we deal with things like this. I talk about how fortunate I feel and how lucky I am to be able to be having surgery. And Jeff laughs saying "Oh yeah. You are just so lucky! If only everyone could be as lucky as you." It's all in the way you look at things. Really, I might not even be here right now so it does make me feel grateful and lucky to get any treatment that will save or extend my life. Before we knew it at around 1:00 they were ready for me.

This time things went a little differently. They had me walk down with Jeff and my mom where the hallway splits off - in one direction to the waiting room where Jeff and my mom have been many times before and in the other direction - the operating rooms. We parted there with hugs and Jeff whispered in my ear "Everything is going to be alright". It's always so hard to part ways at this point and not being in a wheelchair was so weird. "K, see you guys later! Bye!" as I walk away. So then I end up in another waiting room where I will wait for my turn to go into the OR.

I get situated comfortably at the end of a long row of recliners. After being offered warm blankets and a pillow I can relax as they ask me all of their questions. "Do you know why you're here? What procedure are you having done? Which side are we operating on?" My nurse was great. He was very friendly, compassionate and spoke to me like a person. I had two concerns which I discussed with him. The first was whether to have an epidural or not. I was not offered an epidural the last time I had this surgery because of their concerns with my brain metastasis/swelling at the time (last year). This time they were offering me an epidural and so I had some questions about it. What if it did cause problems for me? I didn't have an epidural last time and pain control was good. I had an amazing anesthesist last time and he made sure that I felt nothing and had good pain control post op. My nurse thought that my concerns were valid and that I should speak to the anesthesist about it and he strongly encouraged me to make up my own mind and advocate for myself. The second thing was having the arterial line placed after I had been put to sleep instead of before. I've had both and just let it be known that if I had a choice I would prefer it be put in after I was asleep. He agreed and didn't blame me at all for wanting this.

After speaking to the resident anesthesist about it she gave me three choices: have an epidural before surgery, wait and if needed get one after the surgery if my pain is not being controlled or not have one at all. After further discussion I chose option 2 - wait and if needed have an epidural after surgery if I can't handle the pain. Great! She thought that this was reasonable and we were all on the same page. My wonderful nurse also spoke out for me and I got my arterial line placed after I was asleep. Thank you to this amazing nurse for advocating for me and for listening to me. I saw another familiar face in the room - the nurse who had looked after me for the previous two surgeries. She actually remembered me and we had a quick little chat. It felt good to see someone familiar in there. After a quick discussion with my surgeon I am off and walking down the hallway to OR #5.

So I enter the room and hop up on the table while being introduced to a room full of people in gowns and masks. I'm being attached to multiple electrodes which I'm told will monitor me during the surgery. The mask is placed over my face and the anesthesist asks me what I would like to dream of. This is the first time seeing this guy (he didn't come to speak to me with the resident) so as I'm thinking about it he says puppies or kittens? Neither. I'm thinking more along the lines of maybe my kids or even Jon Bon Jovi. So we settle on a hot beach somewhere and before I know it I'm asleep.

I'm starting to wake up and I can hear people talking. The anesthesist is up by my head and he's talking about me - saying how stubborn I am. Really? Why is that? I can feel myself getting mad. Then he tells me to cough and as I do I feel a long tube being pulled from my throat. Now, I must admit that it probably is quite comical hearing someone coughing up a tube like this that has been in their throat for hours but he says to everyone "She sounds like a pirate! Argh! Argh!" After alot of laughter I fall back asleep. I wake up again lying in the recovery room. Pain is burning through my chest so much so that I can barely talk. The nurse asks where my pain is and I think I just tell her it hurts alot. I feel like I can't move, talk or breathe. Everything hurts. The anesthesist comes over and asks about my pain. I tell him it hurts alot. His response is "If you had let me give you an epidural you wouldn't be having this pain." OK, I'm thinking but we decided not to do the epidural so now what? I can't verbalize what I'm thinking because I'm in too much pain. I'm falling in and out of sleep but when I'm awake I am full of pain and can't do anything about it. The nurse finally comes with a pain pump and hooks me up and I start to feel better immediately. They wheel me down to the floor where I will be staying.

My family comes in after they get me settled. I'm in a room with three other people and it is super crowded. My family seems upset. Apparently, they have been waiting in the surgical waiting room for hours (during my surgery and the whole time I was in the recovery room) and no one let them know that I was even out of surgery. So they are starting to get worried and when my mom phones over to recovery they let her know that I've already been sent to the ward. They were starting to think that maybe something had gone wrong during the surgery; meanwhile, I was out of surgery early. Anyway, we are getting settled and I am basically in and out for the next several hours. My blood pressure is quite low and they are monitoring me closely putting me in the bed directly across from the nursing desk. Apparently they had trouble with my blood pressure the whole time keeping a close watch on it. My family all left to let my get some rest and my night nurse is the same nurse I had last time. Super nice woman and we would spend the next several hours through the night trying to get me to pee. Yes, pee. This is a big deal after surgery. Your bladder is filling itself up, overflowing, yet you can't feel it because you are numb from all the drugs. So you either have to pee eventually or they catheterize you. Now, if you had the choice. What would you choose? I wanted to pee on my own so badly but it just wouldn't happen - no matter what. After an ultrasound of my bladder showing that I had twice the amount of fluid in there than I shouldI had to give up and go for the catheter. Finally after this I could sleep in between waking up to give myself more morpine through the pain pump.

The next mornning were rounds and I can't exactly remember in which order I saw and spoke to everyone but seeing the anesthesist is clear in my mind. He is complaining about being woken up at 2 am to order a catheter for me. He's not happy about being disturbed. This doesn't even make sense to me. Why would he have to order this and wouldn't they anticipate this happening since I'm sure it's very common for people to have trouple peeing after a big surgery like this? Asks me about my pain. It's much better now but not perfect. He reminds me once again that if I had not refused an epidural I would have been better off. What? I am finally able to tell him that it wasn't just that I didn't want an epidural. I am so confused at this point. Does he just think that I am afraid of needles? Does he know everything that I have been through? He really does just think that I am being sucky and not wanting a needle in my back. Seriously?! He finally decides to ask me the question, "Why is it that you didn't want an epidural, then?" I tell him a bit about my history and how they had told me how dangerous it could be for someone with either brain metastasis or swelling to start playing around with the central nervous system. How it could cause major problems for me. I havn't had a brain MRI for three months. I don't know what's going on up there. I just didn't want to chance it especially since I had such good pain control during the previous surgery. I had no problems. He just looked at me with a blank look on his face and left. That was it. Did he not read my chart? He had no idea about my history? This is the one and only time I have run in to someone like this during the last two years of being in the health care system. He was not compassionate, didn't listen and didn't seem to care about anything but himself. All I can say is what a jerk and he will NEVER be coming near me again. My pain control was not handled properly and I feel like he wasn't concerned with making my pain manageable because he wanted me to be sorry that I didn't choose an epidural. That is not right! I shouldn't remember what went on when I was being extubated and I wouldn't if I had been drugged appropriately. My last surgery I don't remember what happened most of the first day because they wanted to make sure that I was kept comfortable. What a different experience this was. Glad I will never have to deal with this guy again!

I then have a woman (wasn't sure exactly who she was) come in and again talk to me about pain. By this point I had been using the pain pump and was doing fine with it. She was here to give me an epidural just in case I was having too much pain. No, I'm good. Thanks though. What's with the epidural push? When I was there having my baby I begged for an epidural and never did end up getting one and now they are pushing it on me. Anyway, I think that it was just ordered by the resident I had spoken too as we had planned just in case the pain pump wasn't working enough. So that was all good.

Another visitor that morning was my surgeon and his assistant. Of couse I ask how things went and am told that if you wake up in recovery and get sent down to the ward that means that things went well. OK. I was hoping for more specifics. Obviously, I'm happy that I woke up. That's always a good sign. So surgery went well. The surgeon then tells me that what he did remove from my lung was black and that there were also some dark lymph nodes there that he removed as well. I'm still not exactly sure what this means and we won't have any more information than this until the pathology comes back. I don't like the sounds of it. We thought that it was a little 6x8 mm nodule - that's it. So he then lets me know that I can leave. OK. I havn't been up out of bed yet, I havn't peed on my own yet, my pain is still not completely under control and I'm hooked up to a pain pump, it hasn't even been 24hours since my lung surgery and I can go? Really? Yep, no problem. I just have to have the tube hanging out of my chest removed and my IV out and off I go. Wow! Just like that. So I'm very cautiously optomistic that this is really possible. A few hours earlier I heard the woman in the next bed talking to the woman across from her. "Watch this young one next to us. She'll be in and out of here in no time". She sounded very perturbed by this and I can't blame her. She had been there for 3 weeks at the time dealing with complications from her surgery. Just so that people know though. Curtains are not sound proof. People can hear what you are saying on the other side of that curtain. Like Hello!!! It's fabric!

So I'm thinking that there is no way that I am ready to go home today. I would love to because it is not fun having three other room mates and listening to all the noises of the hospital. And come on hospital food really is disgusting! So I'm lying there thinking about all this and then someone comes in with some things for me to "bath myself" with. Special wipes because there has been an outbreak of VRE on the ward. What? Come on. The nurse explains that there is some kind of bug outbreak which at first I think he's talking about bed bugs and I freak out. No it's some kind of superbug that is resisent against antibiotics. Great! Now I really do want to get out of here. I get my first visitor of the day, Linda. I'm a little overwhelmed with everthing that has gone on this morning already. People coming in and out. I'm trying to bath myself with the wipes to make sure I don't get some kind of weird bug and my curtain keeps getting pulled open but the woman next to me. I just kept thinking "Please get me the hell out of here". A breathe of fresh air - Linda. We just start visiting and then x-ray is here to take me down for a chest x-ray and physio is here to take me for a walk. Linda is great and helps me manoever around all the mess in the hallway and get me to where I need to be. My x-ray turns out and then they are here to pull my tube out.

I'm up walking around so they disconnect the pain pump and give me some T#3's. Christine and my mom are here and shocked that they are talking about letting me go home. After hearing about the bug outbreak (there's signs up all over the ward) and hearing all the commotion going on we all decide that it's best if I go home. I do some laps in the hallway and have a pee on my own. Yayyy!!! I didn't get a smartie but I did hear myself say "Oh yeah!" and give a little fist pump. The T#3's seem to be managing the pain. Good enough. Let's go! I pack up all my stuff which I didn't even have time to unpack and get my IV out. After getting my discharge instructions I am so out of there. I had actually went into the hospital thinking that I would stay for at least a couple of days so to be on my way home by around 2:00 that afternoon was a surprise to say the least. The kids were so excited to see me after school! We had an awesome night together and boy was it ever so good to be home!!!

This last week I have been resting lots. My pain is getting less and less every day and I am starting to feel more like myself. I have gotten out of the house every day going for little walks or getting the kids to their appointments. I have been sleeping better and better every night and feel like things are going really well. It's a little over a weeks since surgery and I think that I am doing pretty well. Tomorrow, I go back to the surgeon and have my stitches and my staples removed. My insicion is alot longer this time than the last and my pain seems to be worse so I think that it will take me just a little bit longer this time to be back to my old self. Everyone has been wonderful helping get the kids to hockey, coming and making us meals and cleaning up. Thank you so much for this. It really means alot to us to have so much support.

Kaden comes into my room the other day and says, "So Mommy, you don't have cancer anymore right?" I was slow with my response and he continues, "You had surgery so now it's all gone?" "Yes, you are right." I finally respond. Half not believing what I am saying but not sure what else to say. Then I hear him go into the living room and announce to the boys and their friends that his mom doesn't have cancer anymore because she had surgery and they took it all out. God, I hope that he is right...

I am grateful for an amazing husband who makes me laugh when I need it the most and lets me cry when I can't laugh anymore. My kids amaze me everyday with the way they handle life and have grown up so much in the past couple of years. They are growing up into the little men that I always dreamed they would become. We have family right there helping us get through this and taking care of me. The love I feel is so overwhelming! I know that even those who don't live close keep us close to their hearts and this means so much to us. There are alot of people out there praying for us and cheering us on and this is what keeps our spirits up and keeps us strong. Thank you....

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