This Waiting game never ends

Well we’re waiting on my surgery (if you can tell time & have a calendar you should know from my last post that January 30^th has come & long gone.. I know, you’re getting ahead of me.. just slow down, I’m sorry, I’m going over that last six months in *hopefully* two blog posts, just keep reading & don’t rush me, it didn’t work for me when I tried to rush the Doctors either they still take their sweet time.. just let me type) I’ll tell you about what I was thinking, doing, & also a few things that I left out or mixed up in my last post.. Let’s back track first!

I’d had the same job for two years (the one I was trying to save with the ADHD medicine, yeah, that job..) & was missing a fair amount of work with all the crazy shit going on in my personal life.. I’d decided to start a backup plan & make baby stuff from home to sell online.. I got some stuff to get it going then lost my job on December 1^st.. Then on December 10^th I was supposed to get my biopsy, only I got the day & date mixed up & found out two hours late on the 10^th that it was “today & not tomorrow” so I had to reschedule it.. I could have found out sooner, but it’s all in the past & really I see no point in focusing any extra thought on that fact simply because a small gap of 17 days wouldn’t have changed my final outcome.. on the up side of this I get to take legal action against my former place of work since they knew I was undergoing pre diagnostic testing & wasn’t doing so good, they should have offered me a medical leave, not all out canned me.. Whatever, their loss, my gain!

My CT scan: I’d just kinda mentioned it last time but after some thought, I think I should share about it so if anyone else has to go thru it then they will kinda know what to expect.. the guy tells me it will burn & feel like I peed my pants when the contrast dye goes in.. I think to myself “it can’t be that bad..” & it fucking is! That shit burns! & you really do feel like you’re peeing yourself! But then you also have the peace of mind that it is only a feeling & not really an action! & you can’t move to help deal with the burning.. you just have to lay there well you feel like you’re being burned thru your veins Just thought you should know too, because until I was told, there, on the spot! I’d never known that part before, so know you know too, if you ever have to get one done, & also you have to take out all of your metal so it doesn’t mess with the scan & get fuzzy in spots.. Also good to know before you get there..

Oh, & the quick edit from the last post, I was reminded that the nurse only told me as bland & un-informal as all get out that there were “a few very bad lymph nodes” on my scan & when I asked her for more info, she didn’t know because she was just running the message along from the doctor, thru her, to me.. Still not very helpful.. The shit that added to my nightmare that day was the pre surgery call you have to make.. They force you to face the fact that you might die in surgery.. well, ok, not force, but they ask you shit like, would you like any church, priest, rabbi, monk, saint, or Jesus himself be contacted OLNY IF NEEDED??? & you think “wholly shit, she is asking me if I want them to call my church if I die during this!!!!” or at least that is what I thought.. so I told the nice lady what church I used to go to, way back when I still believed in god, (& had just started going back to for the sake of wanting to make up with the big G for all the time I’d dismissed him just in case I did die) Next She asks if I have a will.. oh, shit.. I don’t.. So I ask her if I need one? She says it is not mandatory to have & can tell I’m freaking out in my head, even though I haven’t started freaking out, out loud.. then she asks if I have stuff set up like do not resuscitate or any of that & I tell her that I don’t care what it takes, they’re allowed to do whatever the fuck it takes to make sure I get thru this shit alive, they could jump on my chest if needed! She even laughed a little at that one.. good, I like having someone to laugh at my save my life at all cost joke, that would be why I made it (no really, you may laugh, it is healthy to laugh!) then we finish up the dyeing possibility Q&A & I call my best friend to laugh with me for a bit to help me cope but then we have to say our goodbyes & I’m left to my thoughts.. with nobody to laugh about my spread cancer news or scary fact I could die in surgery  jokes anymore.. & I feel scared!

I slept a lot over the next few weeks, not that I was tired, but because I didn’t like being awake & thinking about having cancer.. it was easier to ignore everything if I was sleeping, I could dream about anything! That window of time is honestly a foggy blur I’d been blocking out because that is how I was mainly coping, thru denial in the day & grieving alone with my tears well my loved ones lay sleeping & completely unaware at night. My sister came to see me at some point in there & she worked on my dreadlocks.. I am very thankful, even though I barely remember it. My husband had gotten his job back, my mom works full time, my friends all have kids, & my sister lives an hour away, so what time they spent on me means a lot, same with my aunts, other friends, & family that called, texted, or messaged me to keep positive thoughts.

My aunt Deb lives a few hours away & made plans to come see me the night before so she could just be there for me that night, see me off to surgery in the morning, & be there when I came to. The night before surgery, we talked about sewing machines, my life up till now, & stuff I have forgotten, but most importantly, we talked! That all helped me to keep forgetting just what I was about to go face before the sun even came up the next day.. Then she needed sleep & I needed to get ready get ready…

Then it hit me, like a truck on an ice slicked road, as I was taking out my body jewelry & getting ready to take a shower, that I was about to get cut open & taken apart

But just as I had the day I went in to get the news, I did my best to keep a straight face, even smile a little, & find hope that everything was going to be fine! When it was time to go, I put my overnight bag in the car since I’d be cashing at the “H hotel” if you will, for the night after my surgery.

Now shit gets real.. real hard to think about.. real scary.. real.. I really do have cancer. That kind of real.. where you don’t want to wrap your head around it, but you’d lose your mind if you didn’t except that it is, in fact, real since up till then I’d just cried or ignored it..

January 30^th

I’m sorry

I don’t remember that day

Okay, I do & I’ll tell you

But I wish I didn’t have to remember that day

Or at least just forget that morning

But I can’t

My aunt. Husband, & I said a prayer for a good surgery & everything to go well, for me to be brave & nothing go wrong.. my mom had to drop my little brother off to school but she’d taken that day, & all the way till next week off of work & would be there before I went in to surgery. They called me back to get ready, my husband came with me.. The lady asked the same questions they’d asked me over the phone all over again.. I hate how they do that.. I’m sick of telling them everything over & over & over again & again & again.. then she told me I’d get my gown, mesh panties made for a giant, & ugly grip sock, get dressed, my mom & aunt could came back & wait with me, then she would place my IV...

I got dressed & sat there waiting for her to come in with my loved ones by her side.. but then she came in alone.. & placed my IV.. & I figured it was no big deal, she’d just go get them next.. then her & my husband.. my stupid husband.. talked about giving me something for the stress, to, you know, help calm me down… then this guy comes in & tells me he is here to drug me.. okay, cool, just make sure the next line of people you bring in here has my mom & aunt in there.. He give me the drugs & I start to feel heavy, my mind gets cloudy.. but that is ok since my husband is right here by my side.. he’s got my back.. or so I thought..

The man & lady that had both put shit in me, well my family sits waiting to see me off, come in & tell me that IT’S TIME!! They’re here to take me off to be cut open.. & the mental clouds part in my mind! I lost it! I started freaking out about seeing my mom & aunt.. & my stupid fucking husband is trying to hold me down.. Then the fucking guy with the evil, head clouding, body weighting drugs gives me another dose! & I’m screaming now! I don’t need more drugs, I just need my family, but the second syringe has been pushed into my veins.. All I want is people I can trust, to stop anyone from drugging me up even more.. & my wonderful husband goes running, literally RUNNING to get my mom & aunt well the mad house goes on in my room.. Then the three people I love & have wanted by my side the whole time are there! Only I’m so worked up about the trauma I’ve just been put thru that it isn’t peaceful & nice.. It’s depressing & scary, that this might be how they have to remember me for the rest of their lives..

I forgive my husband to a point. He works in a hospital. That is his job, holding down the crazy people well they unwillingly get medicine.. he just went about it in a very non Husband way when I needed him to stay in husband mode, not work mode.. He still laughs about everything, but I must just except it & move on, like I did well writing this.

Then it really is show time. they wheeled me off thru the doors & into the room where they gas you with the mask & tell you count back from ten!

ten….

nine…..

eight………

sevennnn……………..

I’m sorry, but I have no clue what happens now & for the next 6 hours.. just that my family waited, my husband paced the floors & wouldn’t eat, then ran off to find the surgeon as soon as my number switched from surgery to recovery, leaving mom & aunt to try finding him, mid conversation with the surgeon & later unwilling to tell me what the hell I’d just been thru. Also, they made a trip to the gift shop! I know because they gave me a card, candy, flowers, & a ring (I love jewelry!) then kinda filled me in on everything I’ve just told you, also they showed me a picture of my thyroid!

God willing I figure it out, here is the picture!

Okay, on a side note, I did get my surgery report so I do know what happened well I was under a bit better but we aren’t there yet so slow down! Lets enjoy my battle scar & awesome painkillers! I’ll tell you that part when I get to it!

I remember starting to come to, being wheeled to my room, moved from the operating recovery bed to the adjusting bed in my room, & pushing the buttons to move it before the nurse could even tell me how since laying down really hurt.. I remember it made me feel like Darth Vader, when they turn the table upright at the end of the movie.. I think my family came in right around then.. I was apparently really white & looked dead when they first saw me. I made my husband come help me adjust the bed more (& hand over my nose rings so I could quickly put them back in..), & the nice student nurse find me more pillows to put around my neck & shoulders. Oh, yeah, & I was STIFF! I couldn’t turn my head left. My face, chin, & chest were numb.. & something was wrong with my feet. They hurt, like they’d fallen asleep, died, got stabbed with pins & needles from hell, & went into a coma on my legs!! But I’d just woke up after surgery so I didn’t think to address anything. Just lay stiff, in my comfortably adjusted bed, well my mom, aunt, husband, & hospital staff talked around me. Wait, no, to me, or, well, more at me, that’s a better description.. well they all talked at me & I did my best to understand words.. not that I didn’t understand words, but the meanings of what they were telling me since I was in no mental or physical state to deal with anything, let alone hear what I had going on.. I remember saying that as long as my husband or mom understood then we were good since I was way to groggy.

I remember when my surgeon came in to see me & said he was glad to see I was “awake, responsive, & alert” (hahahaha.. ah, I so was not alert & I was barely responsive, but it’s funny to me none the less). I remember he shook my husband’s hand & I got confused because he didn’t shake my hand.. he always did at the start & end of every one of my appointments I’d had.. then after some thought (ok, maybe a lot of thought, time was of foreign knowledge to me) I remembered I was not only stiff but had tubes sticking out of my hand & arm so I really was in no shape to even try shaking hands..

I remember them bringing me medicine, of what kind, I don’t know. I had my family posting, texting, & calling to pass along that I was alive & well since I was in no shape to do so myself. So & so told me so & so says such & such & love me lots. At some point my mom had to go get my brother from school & my aunt had to go home too.. (I totally do not remember anyone leaving or coming back). But they brought me my mail. I received a care pack from my aunt Cindy. She sent me tea, apple sauce, puddin’, coupons, a hot/cold pack, a 2 pack of fuzzy grip socks, a magazine, a Sudoku book (I have no clue how to do Sudoku, but it’s the thought that counts), & a book titled after what I’d told my family I had: “THE C-WORD” by Lisa Lynch. It was her story of her cancer journey. It took my breath away..

Quick flashback/update: When I told my family & closest friends the positive test results, I simply told them about my “lumps & bumps”. My husband pointed out to me that they needed to know what I was telling them, so I sent out a fallow up message that said something like “& just to be clear, it is “the c word”, but we don’t use that because “lumps & bumps” aren’t as scary!”. They all agreed, “Lumps & Bumps” sound better than cancer (now you get the “lumpsandbumpssoundbetter”). & in this book Lisa Lynch did kinda the same thing only she called it “the bullshit” instead of “the c word”. I’d started reading it after I got home & decided to go on her blog in hopes of seeing her living out the happy life she’d wanted to, but had to put on hold & wrote about in the book, only to find that “the c word” was back, in her brain & bones.. then I most recently found out that she passed away last Monday, the 11^th. She was the inspiration for my blog, in the hospital. Because I wanted to share my thoughts & feelings on all of this from my point of view, like she’d done. I was very sad to find out she’d passed away. She was & still is an amazing inspiration. Also, her book is very good, I highly recommend it!

Ok, back on track.. where was I? I think it was dinner time. Room service is awesome!!! I got eggs, mashed potatoes, & soy milk then only ate three bites before I hurt to bad & needed more pain killers.. I asked the nurse for painkillers, she said okay, then disappeared for a few hours (I’m not just saying this, she really did disappear, & left me waiting for almost three hours, my mom watched the clock) I’d started to cry.. bad move.. that was the most painful cry of my life!! Don’t cry if you’ve just had your neck taken apart all the way around, down your chest, & up under your jaw.. it hurts really bad, then add the pain from lack of painkillers, & you get pure awful, like you want to die cry! My mom voiced that she was upset the nurse vanished & my husband stepped out quickly to find someone & make them drug me. This time I was totally okay with that!! The nurse reappeared & gave my something for pain in my IV- that fucking BURNED & made me cry even more! I really wish I’d gotten that nurse’s name, she’s a cunt. The student nurse was really nice though!

I went to sleep for a bit, got woken up at shift change to meet my night nurse (she was nice) & get more drugs, then passed back out. I had to wake up for a second in the middle of the night to take more medicine & quickly passed back out again.

I woke up for the day just as the kitchen opened. I love breakfast! I ordered PANCAKES!!!! Along with eggs, mashed potatoes, & soy milk.. the lady taking my order laughed & told me she’d never had anyone ask for that combo together ever before.. but I’m just unique like that, & wanted a combo of stuff I knew I could eat.. I love pancakes (if you couldn’t tell from my excitement) & with the help of my awesome morning painkillers I ate everything with no problem!! I messed around on the free internet for a bit, & my mom got there for the day. Then the nice student nurse & everyone else started bugging me about walking around.. I did not want to.. I was stiff.. but they wouldn’t leave me alone until I did so I made a quick jog, on my tippy toes since my feet still hurt, holding my IV poll & sexy hospital gown the whole way! (Now would be a good time to mention I had brought my own PJ shorts & had on a bra already too. Oh! & my rainbow monster fuzzy slippers!!! They make me smile!!) After two or three laps, & a quick weight check, I got back in bed & went back to sleep.. yep.. that jog kicked my ass!

Nurse cunt woke me up to give me more pain pills, an IV injection, change the IV fluid bag, take my temperature, & blood pressure then do what she did best & disappeared for most of the day. I didn’t mind, the student nurse was nice & checked in on me, finding nurse cunt if I needed something she couldn’t get me, or her supervisor if nurse cunt just didn’t show up to help..

My surgeon stopped in to see me in the around lunch time (I don’t remember what I got, but I think it was pancakes & mashed potatoes.) & see how I was feeling. I told him about my feet hurting & how I still felt like shit, also that I was really hot (I was down to just my bra & PJ shorts by then), & asked if there was any way to make to room cooler, but everyone else said they were freezing in my room. So we decided to play it safe & have me stay a second night. Later, a caseworker from the hospital came to tell me about some assistance program I qualified for to help with the hospital bills, since I’d lost my job coming into all of this & what have you. Cool.

My mom left to get my brother from school, my husband’s dad & niece came to see me, also his sister’s boyfriend (since he works at the hospital).. I just played on the computer well they were there since I was pretty drugged up & attempting to interact with people wasn’t really very interesting to me (sorry I ignored you guys..).

At some point the student nurse came in with her teacher supervisor lady & they emptied my gross drain bulb thing I’d repined to my bra (lol, sexy!) oh yeah, I forgot to mention, I had this rubber tube sticking out of my neck, they’d placed when they were sewing me up “in surgery” that had a little rubber bulb on the end for gross shit to run into.. There was a cap on it & it popped open at one point that day because nurse cunt never emptied it & it was full.. That was scary to me.. I didn’t know what to do but thankfully my husband did.. I was just freaked out that I’d somehow get an air bubble or some shit in my neck from it.. you think some strange shit on painkillers.. what can I say..?

My sister came to see me & brought my favorite person in the world!!! My 2 year old nephew, Xandyr!!! She also gave me jelly beans! Xandyr was good, he liked playing with the buttons on the bed to move it up & down.. till My husband did it, then Xandyr wanted to get off the bed.. Damn husband.. Xandyr decided he was over the visit soon after & they headed out.

I had turkey, mashed potatoes, & soy milk for dinner. Was drugged for the night, & went to sleep until they came & did the midnight wake up to check everything. I had a temperature, so they gave me stuff for that along with the other medicine, then let me go back to sleep.

Second morning went kinda like the first, only I was more than willing to get out of bed & run around the hospital floor since I’d spent almost all of the day before in bed. Nurse cunt was still my day nurse *uhg* but then so was student nurse! So it was ok.. my IV had gotten twisted in my hand & hurt me, & when I asked nurse cunt to take it out, she gave me more burning pain killers thru it before taking it out.. she really was a cunt. I started packing my things & getting ready to go home!! my surgeon stopped in to see me around lunch again & was happy to see I felt better & wanted to leave. After he’d gone, the student nurse & her teacher came in to remove my drain..

If you’ve ever had to have 2 inches of tube pulled out of you, I feel your pain.. that shit is gross & painful! You feel it coming all the way out.. & my surgeon had put it in there really nice.. to the point of making it difficult to remove.. they had to play with it a bit to get the stitches holding it in, out.. thank god I was on drugs.. they told me “take a deep breath.. now exhale”. I don’t think I took a big enough breath.. she was still pulling it out when I’d finished the exhale. It was nice to not have it pinned to me anymore! I was tube free!! So I decided to take a shower! (or at least try) it was pretty pitiful. I just stood there, it hurt too much to really wash so I just rinsed off really & got dressed to go home!!

When it was time to finish getting ready to go, nurse cunt came in to tell me about my medication I’d need & the do’s & don’ts of it.. like that I can’t take it with soy.. uh, ok.. I’ve been taking it with soy milk right in front of you the whole time.. My husband & mom pointed out to her everything she’d been doing wrong but she didn’t really want to talk about how she’d been fucking up my medicine, so she just handed over the papers, & did her normal disappearing act.. Though she did walk in as I was having a going home panic attack & I got to yell at her for a second.. that made it kinda worth putting up with her.. & we headed out! I said good bye to my nice student nurse & her teacher as we left, pointedly ignored nurse cunt like she’d been doing to me the whole time I was there, & went to get my prescriptions filled!

I have to say, I looked like shit still & even the old people at the store, on the little power chair cart things look at me with pitty.. my feet still hurt & walking in shoes was awful! When I’d been bit by the dog the pharmacy rushed my stuff so I didn’t have to wait, but this time they just took their sweet time.. fuck dude.. the dog bit hurt less! But none the less, we had to kill an hour.. & I hobbled my ass around to store, glaring at any old person on a power chair that gave me the sad look, like “damn girl, you need to sit down, why you walking?” one man even turned around because he’d taken the last one at the door.. I was honestly pretty bummed, the one time I could use one & they were all in gone.. damn old people..  my husband offered to push me in the cart & I really thought about it, but decided it would hurt too much to climb in.. I also thought to myself I was stupid to have not made them give me another dose of painkillers before I’d left the hospital.. finally my script was filled & we could go!

My mom had set up the pull out bed in the living room for my aunt Deb when she’d stayed the night so I just plopped down there & set up camp. Since hubby had to go back to work, I was staying with my mom. I asked if someone would make me a grilled cheese.. & nobody would.. It made me miss room service.. a lot.. I even tried to pull the cancer card.. but neither my mom nor husband would cook for me.. but it worked on my little brother, so it was worth it! Though he didn’t make me a grilled cheese, but he made me something, so I can’t complain! I usually hurt a lot at night so I heavily drugged myself & prepared for my first night sleeping at home!

Around 4 am I woke up in pain, like I’d been hit by a car type pain, & woke my mom up for more pillows.. she said it was ok to wake her up, I asked her later if it was ok to have done, & she laughed about it.. I really didn’t want to inconvenience anyone with my needs..

For breakfast she made me pancakes (not as good as the hospital but don’t tell her, because I’ll take free food even if it’s not that good, & as long as I don’t have to make it) & I drugged myself for the day! I mostly slept the day away & had alarms set for medication times. I did my pre evening painkillers routine & even made myself a grilled cheese! Well making it I was roaring like a dinosaur (I like painkillers, they make cooking really fun!). My little brother came RUNNING into the kitchen to save me because apparently my dinosaur sounded like it was in major pain & he thought I needed saved.. it was pretty funny, definitely something I’ll never forget!

My mom described me as “the bride of Frankenstein” because I was still all stiff, my left foot still hurt so I was walking lopsided, & still had bandages on my neck & shoulder.. Taking a real shower for the first time was awful! I even had to have my mom come in & help me wash.. It was a fucking work out just to take a “quick shower”! I felt like someone had kicked my ass, I even cried in there from how stressfully difficult it was to wash myself. It made me feel like shit, I’m 22.. 22 year olds don’t need their mom to help them take a shower.. but then when it was all over & I was clean, back in bed, I felt way better! Being clean is always a good feeling! By the end of the first week I was pretty annoyed that I still hurt, was stiff, & couldn’t walk right (thanks to my left foot). Though showering was not as bad & I could do it all by myself again!

Now I should mention something not fun that I was never told.. pooping.. it’s awful! It hurt to go.. the term “shitting bricks” would be the best description for how it felt.. nobody told me I should take stool softeners with all of the pain killers & calcium, but I’ll be nice & tell you, so you don’t have to find out, quite literally, the hard way!

Around the week & a half point was when I was in less pain & could almost walk like a normal person again! My sister came to see me too, & got me lunch! She put it best when she said people probably thought I was to fragile to leave the house.. so she decided to help set me free for the day! It was fun!

On Valentine’s Day I had my after surgery fallow up appointment, with the surgeon, to get my full surgery report. He informed me that he for sure did not get everything in the surgery but not to worry.. & by now, I really didn’t worry, just felt annoyed that I still had so much shit left on my to do list.. that really just meant I had even more waiting to go before I could go back to a normal “healthy” life..

My husband & I went out to see a play that night! It was a lot of fun! My thyroid medicine was making me feel like a person! I had energy & could almost walk right again! In the next few weeks, I had to meet with endocranolagest about my lack of thyroid, need of lifelong medication, upcoming scans/tests, & where they also told me I had to take major precautions against getting pregnant (everyone was telling me this.. it still doesn’t make it any better) they also talked to me about how I’d have to get off my temporary thyroid medicine in a few weeks & told me how much life would suck without any thyroid medication. But I just decided to forget about everything & just enjoy the time I had feeling well! It was awesome! But I still had a down day when I had to look into birth control.

I’d gone off my birth control in April since I was married & we were trying to start our little family. I’d gotten pregnant but lost it & really wanted to get back to trying again, then found out about the cancer so it sadly had to take a back seat, as I’ve been told over & over again, for the next two years.. I kept thinking how unfair it was. I shouldn’t have to be looking for birth control.. I should be trying for a family! But I have to be safe & not get pregnant right now. So fucking unfair. My body had let me down in such a hard way, I can’t even tell you how upsetting it is.

When it came time to get off my medication in preparation for my next treatment I felt moody but that was about it. Until I got a kidney infection (last week, that would be why I’m a week behind..) then I felt like I was dying! But antibiotics are awesome & my kidneys are fine. So now we’re all up to date on shit & you know what’s been going on up till now!

Today I’m getting my full body scan to see just what we’re working with, since they only scanned my neck before only to see the lumps & bumps went on past what they’d looked at. So now we’re as always, BACK TO WAITING!!!

Waiting on the pharmacy to get my birth control in order, waiting on my scans to come back & have them tell me just where & what we’re dealing with, waiting on an official date for my radiation capsule treatment, & waiting to get back on thyroid medication!

I sure hope I don’t get cancer from all these X-rays & radiation exposure.. ;)

(p.s. I dont have time to figure out the pictures before I get shoved into a tube. sorry)