Surgery Wrap Up / The End of Another Beginning

Posts have been sparse. It was much easier to find time to write during recovery. Now that I’m back to work and life and STILL playing catch up, it’s been much harder to keep you all posted.

I’ve had so many friends and friends of friends that have mentioned they’ve been reading along and following my journey and I’m extremely humbled by that. I’m also embarrassed that I left you all hanging for so long!

Everyone asks how I’m doing, so I’ll start there. I’m good! I’m much better but not all better. Feel free to hug me and give a good squeeze – I’m past the point where that hurts, though I find it so touching that occasionally someone is afraid to hug me. I’m so glad people care/take this seriously/believe that what I’m going through is real.

I’m using a lot of slashes tonight instead of mulling over word choice. It’s late and I’m very tired. We spent the evening celebrating my little sister’s birthday! But tomorrow’s still a work day. It’s also my anniversary – lots of exciting things going on to keep me tired. ;)

Anyway, like I said, I’m better but not all better. I’m surprised at how much I’m still sore with what feels like endo even though I know it’s all out. I’m guessing it’s hard to heal from laser burns, so I’ll just keep giving myself more time. Right now, the biggest thing going on with me is stomach problems. All the medication from the surgery and the strange eating habits during recovery have my system very out of whack. I can eat fine, but I’m extra picky, and no matter what I eat I have a really hard time digesting it right. I feel nauseous a lot and get stomach cramps, and that’s what makes me not want to eat. I need to get on probiotics, but again, I’m so busy I haven’t had time for that either. All the catch up stress of course doesn’t help my stress-triggered IBS.

Still, I’ll take this over how bad the endo was!

On to the doctor’s report: the surgery was a great success. My doctor was shocked at how much the endo had grown and spread. He removed more this time than he had with any other surgery, including the FIRST one which logically should have had the most. At least that’s what I think.

Using the robot was a great help to him. Basically the only difference is increased mobility for him. Using the same small incision, the robot arms can bend and go under, around, and even gently and dexterously pick up and move organs so that Doctor O was able to make 100% certain that he removed all the endo wherever it was hiding. Basically, it was like the difference between using this to grab something:

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Or just using your arms and fingers. You have a lot more control that way.

Now for the part that people who are not chronically ill will have the most trouble understanding: the next steps. This surgery, while a great success, was still not a cure. The endo has been removed and I have a clean slate, but it can/will come back. Now we’re at a tough crossroads. We need to decide how best to take advantage of this clean slate, what treatment to try to keep it clean for as long as possible, and if we can afford it.

Yeah I forgot to mention that bit: once I finally started feeling like myself again, I got the hospital bill. Pardon my French but HOLY. FUCKING. SHIT.

Oh, and it was the day we bought my husband a new-to-him car, as an anniversary gift/that old car you’re driving is actually going to kill you and you need a new one.

PLUS we’re going on a road trip in two weeks.

So yeah, money is tight and that really makes me depressed. I always feel like such a powerless failure when money is tight. I also feel guilty for being the whole root of the money problem this time.

I mean I was ready to pay a lot, and I already DID pay a lot, but more and more costs just keep coming out of the woodwork.

Ughhhhhhh.

So yeah. The best treatment would really be pregnancy, but we found out in some post-surgery bloodwork that ooopsie, I’m infertile! In my doctor’s words, “it’s not textbook polycystic ovaries, but……….”

It took a while before I realized that polycystic ovary syndrome is what PCOS stands for. If you’ve ever seen any sort of tweets or pinterest boards about PCOS, you know that it’s always surrounded by gloom and doom.

But that’s a post for another day.

So in short: I feel much better, but I’m not out of the woods yet and I’m still unsure as to where I’m headed next. I will, of course, post here as I go on and think more and get a little less sick and a little more sleep. The bad news is that endo grew a LOT super quick, the good news is it’s gone for now.

And like every step before, this step is just the end of another beginning.

Book Review: Allergic to Life

I’ve had the great pleasure of interviewing and befriending Kathryn Treat. When I won a copy of her book on Kindle, I was excited to read it and decided I’d review it also. If you’ve read my other book review, you know I can be a harsh critic. I do hope that my words here will not loose me a friend. ;) But I do think that because we are friends she knows that I have a wry and sarcastic sense of humor. I know that trait is apt to hurt feelings, so let me say before I begin that I do like this book.

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By pure chance, I happened to read this book Continue reading

What it’s Like to Have Surgery

I know a lot of people are anxious to know how the surgery went, so I’m going to try and get it all down here for you and for myself to look back on. Surgery is a very odd experience, and even though this is my third, there were many things that were new to me all over again. Being heavily drugged really messes with your memory.

This time, my surgery was scheduled for noon, unlike in the past when I’ve had to be at the hospital in the wee small hours of the morning. I’m not a morning person, but I so prefer the early start. The first major reason being the fasting. I was starving and grumpy all morning long. It didn’t help that the hospital was running late. I was never told why, so I assume it was a pretty good reason.

When I arrived, we waited in a small room for a while. Eventually a nurse came in and took my vitals. I was a little nervous about this part – last time I had a teeny tiny fever and it was enough to almost call off the whole operation. But this time, everything was good to go. Waiting is the worst part. I was so jittery that I actually quietly spoke to my Raphael doll about it. Not sure if my husband noticed.

I already told you about all the turtle power I went into surgery with.

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So after a bit I was taken to a bed to do a lot more waiting. I was in a room with a lot of other people, but it was separated out into stalls for each bed, so we had three walls and a curtain all to ourselves. We also had our own TV, and thank goodness for that. I ended up going in to surgery almost two hours late! I would have gone crazy without a TV to play with. We mostly watched a show called “Four Weddings” where brides attend each others weddings and vote on who’s was the best. I actually applied to be on that show because it was new when we got married. Even though I’m pretty sure we would have won, I’m glad we weren’t chosen. It would have been really stressful.

Of course, it didn’t help that every single channel had some kind of delicious-looking food on it. My tummy had a lot to say about that. Also, the hospital needs to rethink putting the channel-changing buttons right next to the call button. I accidentally had nurses running for me a couple of times. Oops! Sorry guys, I was just avoiding commercials.

My mother-in-law came and brought me my new build-a-bear Raphael. The nurse brought me two tiny cups – one with nausea medicine and xanex, the other with water. But it was smaller than the cap on cough syrup! Lady, I know we’re in Texas and the summer water rationing is going on, but this is ridiculous! I did my best, but I think a couple of those pills lived in my throat for a while. Husband chatted with his mom, but that’s all a bit foggy. The xanex made me want to nap.

After a million years someone came to get us. I was in bed and in my gown, and they had told me I had to wear their special non-slip socks. I told them I’d been here twice before and had been allowed my own socks but the nurse said no. My husband, knowing as well as I did that I wouldn’t be walking anywhere until the next day, had simply covered my legs with a blanket and stuffed the socks underneath me. Sure enough, they were never the wiser.

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I have always found a sick thrill in being wheeled around in a hospital bed. My adrenaline is already pumping because I’m nervous about the surgery, but once the bed starts rolling I feel like I’m on a Disney dark ride. I can’t see who’s pushing me and doors open by themselves, and nothing feels real, at least for a little bit. The xanex they gave me probably helped. Though I still think some theme park needs to capitalize on this – imagine a whole ride lying down, wouldn’t that be scary?

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This was the first time my surgery was on a different floor, so I rode in the elevator on the bed too. Boy did that feel weird! Like falling up.

Finally we were in the preparation room. It was all brand new since the last time I’d been. I was a little distressed because I had thought I’d known what to expect. This room was so much bigger and stranger. Husband assured me it was good, and so much nicer than last time. Then my anesthesiologist came in. I was dreading this. For one thing, I had missed his call the night before while spending time with my sister, and hadn’t had a chance to tell him about how scared I was or how I get sick with medicine etc. etc.

The other thing was that historically, I have not liked my anesthesiologists. Let me put it this way: they always seem like the type to steal my organs if I didn’t make it. They all had that Frankenstien mad scientist quality – and it wasn’t just that they were the needle guys. They just all… enjoyed it a bit too much.

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This guy immediately changed my mind. His head cover thing was a Texas flag and he had a fatherly look about him. I didn’t have to tell him a thing. He was gentle and slow, and made sure I never saw anything scary happen. He noticed my husband holding my hand and that was enough for him to be cautious and sweet. He apologized for the wait and complemented me on how calm I seemed. I told him I was nervous and he simply said I hide it well. My husband told him of my reputation for smacking doctors and he nodded and thanked me for not smacking him. I wish I could remember more about him for you. All I remember really is fondness.

He got my IV in but only had the electrolytes dripping, no medicine yet. Then there was more waiting. My husband made up stories for me – I love when he does that. We tried to play Rhett and Link’s mind meld game, but he kept on messing it up by not saying anything fast enough

*(I was going to link you to the rules of this game but I can’t find it and I don’t know why, so basically you just start with a word then say 1 2 3 and both say whatever word association pops up in your mind. If you say the same word, you win. If not, then you combine your words and proceed until you say the same thing: I.E. “Cats” I say “Internet” you say “Dog,” so the next word is “Internet-Dog.” Then maybe we both say “loldogs!” and we win!).

After a while, this IV was making me feel like I needed to pee (ironic). But husband said that’s okay because during surgery…. well, just not to worry about it.

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Nurses came and went and all asked the same questions, who are you, what’s your birthday, what surgery are you having, etc. etc. My doctor popped in to say hi. When he saw me with my two Turtle dolls he laughed, then said “Raphael huh?” and I was SO. JAZZED. That he knew not only the Ninja Turtles, but which one was which! He even said it was alright for them to come into the operating room with me!

When it was finally time for me to go in to the room, things happened quickly and unexpectedly. I’d been through this twice before, but usually we start the medicine in the IV in that prep room with hubby there. The first time I even had no memory of the operating room, that’s how fast it worked. But here I was, totally lucid and being taken in. A crazy part of me worried they forgot, and I might have to stop them cutting in to me to remind them I still needed medicine!

My doctor told Husband to kiss me goodbye, and then he was gone and I was being wheeled in to the operating room. I could remember the room from my second surgery, but this one was totally different. The last one seemed softer and more normal. This one had harsh white light and, of course, the new robot. I’d never had surgery with the robot before. It was scary and loud. It looked like a giant angular octopus. Kind of like this, but without the guy in the middle:

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They parked me next to the operating bed. Last time I pretty distinctly remember it actually resembling a bed, but this did NOT look like a bed. It looked like it was covered in audio foam.

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And it had a hole where my butt would be when I laid down. I guess that’s why I didn’t have to worry about getting to a bathroom. It didn’t look comfy. My doctor noticed I looked confused and asked me to climb over and lay down. I looked down at my arm and said I was worried about my IV, but the truth was I was pretty much worried about every single thing in sight. The sweet anesthesiologist rushed over and gently took the IV tube and my arm and said he had it and I could move. So I clumsily pulled myself up on the “bed.”

Behind me, I saw the abandoned socks on the rolling table. A nurse took them and folded them and set them aside – not a word was said about my little caper.

Then he whipped out a needle which made me even less at ease even though I knew it wouldn’t touch me – it was going in the IV. But still, dude, come on. Must have slipped into that Frankenstein habit all the anesthesiologists seem to have. He said “Alright, time for the “I don’t care” medicine.” I said “That’s good. I was a little worried. Last time I got it before I came in the operating room, I couldn’t even remember this room.” He was behind me now and I couldn’t see him, but he said “Well, perhaps you won’t remember this time either.” I hoped not, but clearly I do remember. Then they stuck all the little monitors on me. When he got to the last one, he said “This one’s always cold, sorry!”and stuck it under my arm – and yeah, it was freezing. The room was actually freezing, I guessed because of the robot. But they had heated sheets for me, which was nice.

I suppose I looked upset. I wasn’t mad or crying or anything, just uncomfortable. My doctor came up to where I could see him and asked if I was ok. I was starting to feel sleepy and my voice came out creaky and feeble. “Yeah, it’s just loud and scary in here!” So he took my hand and held it until I fell asleep.

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The next thing I remember was having some nurses very close to me. I don’t know where I was, but the doctor wasn’t there and my husband wasn’t there, so I must have been in the recovery room I always hear about but never remember. It seemed dark, but I think I just couldn’t get my eyes open. I felt sort of like I was in a dream. It’s always very difficult to talk in dreams, and it was difficult to talk now. I had to concentrate everything on getting a voice. “Hhh….hhh…hhurrr….hurrrrrr….hurting! Hurting! Hurting!” Even with all the urgency I could muster, I was still using a baby voice. Someone told me it’d be alright and to calm down. Then I was asleep again.

When I woke up again, I did the same thing. This time, I was moving. They were wheeling me into my own room, and this time after I got a few “Hurting! Hurting!”s out it was my husband who took my hand and patted my head and told me it was alright. A nurse told me I could have juice and a snack if I wanted. They listed some fruits and I really wanted grape juice. I tried to ask for it but ended up giving up and just saying “apple.” Boy, talking was tough. Luckily, though, drinking wasn’t. And boy did I have an appetite!

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The past two times I had surgery, eating was a battle. I felt so nauseated that even ice chips were unappealing. They had loaded me up with anti-nausea though, and I was ready to eat. My mouth was so dry I went through three cups of apple juice while munching on jello and graham crackers. They brought me a vicodin (edit – I know I know, it’s Norco now, I haven’t gotten used to the name change. Also called Hydrocodone), and I was rather disappointed to see when they wrote on the board that it was 5mg – the kind I’d been taking at home all along. I knew that wasn’t going to help at all! Then they wrote 4:30 – was it really that late?! Last time I was going home by now…

I ate and napped and ate and napped. Husband tried to show me the gifts people had brought but I could just smile and nod at them before dozing off again. My mom and sister came to visit around the same time that I chirped out a few more “hurting!” calls and got another pill. At least they’d let me take them closer together than I did at home. The second helped me rally and start really talking. I needed to go to the bathroom, so husband buzzed the nurse. He said he could help me up but I insisted on calling the nurse. I like to follow the rules.

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She told me to swing my legs to the side but it was much easier said than done. They seemed not to want to move. Then she pulled off my blankets and took off these big leg warmer shin guard looking things I could vaguely remember being put on just before surgery. I don’t know what they were, but once we got them off I had full control of my legs again.

When I came back from the bathroom I climbed back in bed. My family asked if I was ready to go home now. I pouted. No! But they were right – I had eaten, drank, walked, used the bathroom, and was talking. That’s all the criteria. As much as I wanted to lay down and sleep, I knew it would be better to get home. So I asked if I could rest for just a few more minutes before they called the nurse.

Besides, Husband had just found Ninja Turtles on the TV.

When it was time to go, who should pop in but Elsa. I was asked if I did all the required tasks and given my instructions to wait 24 hours before showering or removing the bandages. She lifted my gown to make sure the incisions looked alright and said “One, two…where’s the third?” I reached for the edge of my panties (which the nurse had helped me get on when I went to the bathroom) when the nurse said “Oh, I see it.” I didn’t think anything of it at first. I wanted to know if I had stitches or the skin glue – I’d had each in the past. The nurse wasn’t sure and asked if I wanted her to look under the band aid. I said sure and mentioned that I hadn’t looked at anything yet. She said I really should. We pulled up my gown and I was pretty surprised to see an arc of one, two, three bandaids all on my stomach.

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Last time, not only did I only have two incisions, but one was on my belly while the other was just under the band of my underwear. The lower scar had only just disappeared. I was glad to not have a new one in it’s place, but I don’t like having all three on my stomach. It’s even harder to move than last time since so much of one’s movement relies on the muscles in the abdomen. Now I can’t even lay on my side or bend. They are, however, stitches. I said I was at least glad about that. The nurses seemed surprised. I told them I hated the skin glue. I thought it didn’t heal as smoothly but the worst part was how much I just wanted to pick it off. I won’t mess with stitches.

Husband helped me get dressed before gathering our things and leaving ahead of me. I stood, waiting for a wheelchair. I didn’t want to try and get up from bed again, and the chairs were too low as well. Standing was agonizing but better than the alternative. The worst part is the air bubbles – during surgery, they pump you full of air. My stomach was blown up like a balloon. But when I stood, air bubbles traveled up to my shoulders. I knew this had happened last time as well, but couldn’t really remember the feeling, just complaining about it. I appreciated that I had forgotten the feeling because it’s awful and there’s no medicine, massaging, or change of position that can help it. The nurse apologized that there was nothing to be done, and attested that most patients have more trouble with the bubbles than the incisions.

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I remembered that last time Icy Hot had helped with this – I only remembered that because I told a friend about it who was having surgery shortly after me. Like the pain, I couldn’t actually remember how Icy Hot felt or how it helped, though. I just had to have faith in my half-memories.

I was moody while they wheeled me out. I didn’t try talking or responding to the small talk the nurse made. I was in pain and grumpy that I couldn’t take another pill until ten. Plus I hadn’t really readied myself to leave – I still wanted to stay and sleep. In the car, husband told me that they had removed much more endo than either of the previous times, and that it was very good we went for surgery when we did. I didn’t pry too much – I knew I wasn’t “sharp” enough right then to take it all in and remember it. My husband is sweet and in the past has gladly repeated information a thousand times for my drugged brain. This time I was content to doze until we got home.

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Once there, husband made me a chicken wrap and we turned on the Ninja Turtles movie. I ate ravenously, but fell asleep with half-chewed bites in my mouth over and over. I finally finished eating arounf 9:30 last night, when I rallied enough to write a quick post to you all. I worried that since I’d already slept all evening, it would be hard to fall asleep for the night, especially without my shower routine.

So of course I fell right into bed and slept like the dead.

I’ll continue to post updates here, but for now, I need to lay down again. Thanks again for all the love and prayers!

~Rachel

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Surgery Socks and I’m alright

Hey all – this update will be brief. I got home from the hospital only a couple of hours ago and pretty much slept while waking up long enough to cram some chicken wrap in my face. I often fell asleep mid-chew. I’m exhausted and in agony at the moment so I need to get in bed asap.

I did want to take a moment to thank everyone for the support today. I felt extremely loved.

A couple of days ago, I posted on my personal facebook asking if anyone knew where to get Ninja Turtles socks locally. I had seen some at comic con and really wanted to buy them, but at the time I didn’t know I’d be having surgery soon and I convinced myself that it’s about time to grow out of childish fancies like knee-high cartoon socks.

But one pain medication saturated night, I remembered those socks and suddenly became distraught. I felt like I could not face this operation without ninja turtle socks. My brain was in a state of panic and trying to find an excuse to not go through with the surgery I’m sure.

See, the thing is that when you go in to surgery, you can’t take anyone or anything with you – not even your own clothing. The one exception has always been socks. At my previous two surgeries, I wore my purple argyle knee-highs into the operating room, but now those were old and full of holes. They had been a great comfort to me.

I got an inordinate amount of replies on that facebook post – people googling furiously trying to find some for me. Then last night, my sister stopped by to wish me well. She is out of town today, so she couldn’t be with me on the day of my surgery and dropped off a pack of ninja turtle socks for me. I was so touched! But it didn’t end there. When my husband came back from rehearsal, he, too, had a bundle of socks in tow.

Not one pair between the two of them is a repeat, and they didn’t discuss it at all.

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I don’t know what to say except that I wish I had more feet! I ended up wearing a Raphael from each of them.

But it didn’t end there – my husband also surprised me with a cuddle buddy to snuggle with in recovery. For my past two surgeries, I’ve had some toy with me in bed and on the wheelchair ride to the car. This time, I had…

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Raph himself! But it still didn’t stop there. My mother in law surprised me by arriving with another buddy for me.

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The Raphael from my FAQ post, which apparently came out TODAY! PLUS she got him PJ’s and slippers, so he’s all ready for surgery too.

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I felt so loved. They ended up letting me bring my new stuffed friends into surgery with me!

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My doctor laughed when he saw me with them, then said “Is that Raphael?” My doctor knows Ninja Turtles? I have never felt like I was in better hands.

When I woke up, my mother-in-law’s sister had dropped off a ninja turtle stationary set for me as well. And when I got home, my husband had ninja turtle fruit snacks waiting for me. I also found some stunning hand-sewn towels from Katheryn Treat in my mailbox! Along with my free Taco Bell socks I’ve been awaiting for, and two new Vinylmation I ordered. I slept while watching the awesome ninja turtles live action movie from the 90’s.

The surgery went well, and the doctor said he removed a lot more endo than he had in either of the previous surgeries, and we’re confident that once I recover I’ll be feeling much better. Now I just need to recover! The air bubbles trapped in my shoulders are murder. I just took another pain pill and generously applied Icy Hot to the area. Now to go back to sleep.

Thank you all for your prayers and support!