More Pain Killers Please!

I did it! I had surgery! It was awful!

I know it has been a long time since I have posted anything on the blog, but I have needed a lot of time to just process everything that is happening. It’s been less than two weeks since I had surgery and it has been a strange and painful journey so far. I’m still spending 95% of my time in a fairly stationary position (the couch and Netflix are my friends), but I’ve actually started to move around a bit more every day. Before I get too far into the triumph of me getting a popsicle without feeling like death is consuming my body, let me recount the events of the past few weeks of my life:

Before I went in for surgery, I spent my precious time mostly with Kris and the dog. I saw as many friends as I could in small doses and was able to see a lot of family too. It was completely uneventful and I absolutely loved it. We went to the beach, had some nice long walks on the farm, and I spent the majority of my time just trying to forget the huge, looming black hole that was steadily approaching. I remember when the surgery date was set, thinking it was so far away. It was about a month out and it would never get here so why should I worry about it?

This disease is weird for me to understand. If you’re sick, you don’t feel good. You take cough syrup to help that sore throat, Tylenol for a headache, icepack on a sore knee, and so on. The things that you do help relieve whatever symptoms you have; it’s a straightforward relationship. I realize I have a disease, that there is something growing inside of me that shouldn’t be there. It didn’t hurt though. There was no pain, my body felt and looked normal. Aside from the small lump that I could probe for inside my left breast, I was still exactly the same as I had always been. Mentally it was hard to reconcile with this fact. I was sick but I was fine, so why do I need to do anything? It’s very strange and it still kind of bothers me.

Anyway…

The big day finally arrived. The morning of Friday, January 3^rd started far too early for my liking. After a leisurely winter break with very few doctor appointments, 5 am is an obscene time in the morning to wake up. Before surgery there is a laundry list of instructions, most of which were pretty innocuous but with a few prickly points. First of all, you get to wash the day before and day of with a special antibacterial soap. It makes sense and isn’t too terrible but the smell isn’t what I would call “nice” and it makes your skin incredibly dry. Second, you cannot shave around the operation area. Fortunately my breasts have never produced a fine pelt so that wasn’t too bad, but that operation site also included my armpits. NOT OKAY DOCTOR! I know this might sound crazy from someone who can go months on end without shaving my legs but I am steadfast in my pursuit of clean underarms. Third, and the worst offender of them all, no food or drink after midnight on the day of surgery. This is a tragedy. Anyone who knows me knows I like to eat and with great frequency. I like to snack and I chew gum a lot in between eating. This little kibosh on input of any kind is hard on a normal day, much less when I’m stressed out and nervous. All things considered, by the time I got to the hospital around 6:30am, I was already not doing too well.

Check in at the hospital is nothing unusual at this point. Name, birthday, insurance, yadda yadda. This one had a fun twist getting to peruse over options for my final wishes should anything happen during the operation. I had discussed all of this with Kris multiple times and we did have some stuff in writing back at the house just in case anything was to happen. It’s one thing to talk about it but actually seeing it in real life is a weird and scary thing. After check in and getting my sweet hospital bracelet, I got to spend a few minutes sitting in the waiting room with Kris, my mom, and my dad. No one really said anything, at least not that I remember. My name got called and I was taken back to the big pre-op room.

The room is nothing glamorous, just a hospital bed, TV, and 30 different machines to monitor everything that could ever happen in your body. I took a pregnancy test (standard procedure for my age) and then got to change into my fabulous faded blue hospital gown. Two nurses had come in to check on me, ask a few questions, and take my vital signs. A 3^rd one appeared wearing a very bright green apron with every pocket full of syringes. She was nice but honestly looked like a convincing villain from a horror film with that apron on. She came in to start the IV in my hand. “One poke and that’s all you’ll feel!” I suppose there was some truth to that. It didn’t hurt too badly and she then started to flush the vein with saline. That’s when everything got fuzzy. The next thing I remember is everything being red and bright and someone yelling at me “AMELIA, YOU HAVE TO BREATHE!!!” I came to with my head hurting and feeling like I was going to vomit all over myself. I was shivering and sweating at the same time. Things were not off to a good start. I was told I had a Vagal Response which is the clinical term for “You got spooked and frightened”. I guess the combination of not eating, stress, exhaustion, and getting my hand stabbed caused me to not feel good. Weird….

After my little episode, the next period was marked by nurses bringing me blanket after blanket to try and stop me from shivering; I think by the time I was getting wheeled to the radiation room, I was up to 10. I had a very lovely nurse stay by my bedside for the rest of that morning. I cannot remember what her name was but she was really nice and held my hand every time they moved me. Her hands were very tiny but very warm, and it was very comforting in that strange time. She walked by my side as someone moved me to a radiation lab (I think, they had given me some drugs by this point and they were starting to kick in). There was a spherical, bald doctor and a nurse about my age who were there to inject me with the radioactive dye for the lymph node removal. It makes me sad to think that the last feeling I ever had in my left nipple was of a needle going into it, but ah well, such is life. He injected a rather large syringe of radioactive dye into my boob, said good luck, and then faded back into the mist. His lady nurse assistant handed me a white carnation that I clutched to my torso as they wheeled me back to the pre op room. I felt like a corpse being pushed about a morgue.

Now the fun thing that I didn’t realize about the dye is that it takes 2 whole hours to take effect and find its way to the sentinel lymph nodes. I was pretty loopy and sleepy by now, so it seemed like I was only waiting for about 15 minutes. My mom and Kris came back to sit with me for a while. I guess I talked to them but what about I cannot say. The best part of this whole pre-operation experience did take place during this time. A nurse came in with something that I can only describe as a clear huge bunched up trash bag. She took off all of my blankets (booooo) and then proceeded to cover me in this plastic nightmare. Then she took out a huge vacuum hose and attached it to my bag covering. It instantly puffed up the bag full of warm air and I just floated away on a cloud of happiness. I don’t know what that thing was or where it would exist in the wild, but I highly recommend one. My mom tells me it’s called a Bair Hugger, personally I like happiness cloud but it was warm air perfection. I reveled in it until it was finally my time. My anesthesiologist personally rolled me to the O.R. It was a strange bright room that just felt sterile. Three or four people were moving around in full surgical gear (masks, caps, gloves, smocks). Someone put a big oxygen mask over my face, I was told to take a few deep breaths, and that was all I was done.

(Kristoffer’s Korner tidbit: prior to Amelia leaving for the O.R., her family left us alone in the pre-op room. She regained conscious briefly, gripped my hand and, wide-eyed, whispered “Kris, I don’t want to die…” and faded back to sleep.  I squeezed her hand HARD and demanded that those not be the last words she speaks; should the surgery be lethal, I would be responsible for reporting those to the public.  In typical Amelia fashion, she woke up, looked down at her coverings and spouted some nonsense about how hospital gowns should be more fashionable.  Good enough for me. Now, back to the important information…)

The surgery took 6 and a half hours.

My first memory after the surgery was lying on my back feeling very confused and thinking the light was too bright. I believe I was in the recovery room, which is just like a holding dock they put surgery patients in to wake up and stabilize before they send them either home or to their hospital room. I remember calling for Kris, just wanting to see him so I knew I was alive. He came in at some point and held my hand for a brief time. I honestly don’t remember too much about all of this. I know at some point I was wheeled to a small hospital room in another building because I woke up there and was kind of confused. I saw Kris and my parents, and just felt completely out of it. I went in and out of sleep not really understanding much. Nurses would come and go, checking vital signs, emptying my drains, and delivering a lot of medication through my IV. (I just want it on record that every conversation with the nursing staff included “please” and “thank you”.) It was very strange. I really had no idea what was happening.

My only really clear memory of that day was from late that evening. The night shift nurse had come in to give me another dose of pain killers. She was a spunky lady in her late 40’s, early 50’s, and she had purple hair.  Her name was Rhonda and she was my favorite. She gave me a dose of something, but said she was holding off on the second drug because she wanted me to stand up before I got it and went back to sleep. This is a much bigger deal then it sounds. I’m not sure how aware you are of your own body, but even from an upright position sitting up uses a lot of different muscles including those around the chest and arm area that I had just been operated on. Even moving the hospital bed so the back was more upright was painful, how the hell was I supposed to stand up under my own strength? She helped me slide my legs around so they were starting to dangle off the bed. She then put my hands on her forearm, and placed her other hand behind my back. Slowly and excruciatingly she repositioned me to an upright position. I felt like my whole chest was on fire. She told me that I needed to stand up completely before she would finish for the day. I got my feet on the ground and slowly rose up straight. The whole world was on fire at this point and I wanted to die. She put her hand on my back and said “You did a good job”, but my work wasn’t done yet. Sitting down was fine by lying down was almost as painful as sitting up was. She helped ease me back into bed, and immediately gave me more pain killers. Everything that had ever existed was awful, and then I went to sleep.

Day two in the hospital was probably my best day in the hospital. At least it was my most lucid day from what I’ve heard/remember. I saw various family members throughout the day, my brother Moses finally came back from Minnesota and made it down to visit. He was there long enough to eat all the food that had been brought for me, make fun of my blue catheter bag, and (according to my mom) rile me up to the point of exhaustion. It was a good trip for him. I saw some of Kris’s family which was fantastic as always. I got a few sets of beautiful flowers from family and friends that I am now wanting to write thank you notes to. I managed to get to an upright position again that evening, and with the aid of a walker, I walked about 50 feet! It was all very exciting for me, and though I was loopy and in pain, I could feel myself getting better from the day before.

A side note on bodily functions post surgery:

A fun thing that I learned is that during a major operation, the digestive system pretty much shuts itself down.  One of the things the nurses check for after surgery is was they call “bowel tones”. They use the stethoscope on your belly and just see if they can hear any gurgling. Your first fart after surgery is a big deal. This is still incredibly funny to me because I’m a 2^nd grade boy at heart. While you’re in the hospital they actually have a good selection of food to choose from, but my appetite was very small and consumption was limited to mostly Jell-o, popsicles, and saltines. It took 3 days but I finally farted. I should have thrown confetti in celebration.

As for urine, I did get a delightful catheter placed while I was out. As promised the dye from the lymph node biopsy did give me so avatar blue pee. It also turned my skin a grey pale causing me to look a little more like a corpse than usual, but that passed after a day or so. My urine was blue for two days after surgery, about the length of time I had the catheter in. It really wasn’t painful; in fact it was nice since I didn’t feel the urge to pee for almost 3 days. When they took it out, it pinched a little but all things considered it wasn’t invasive and was very helpful.

With how good I was feeling the day after surgery, the day following was a million times worse. I was starting to be transitioned to pill medication from IV and something I was taking caused me to be exceedingly nauseous. My pain was worse and my stomach was in constant commotion. It was hard to drink water and the anti nausea medication seemed to do nothing. All I could hope for was sleep but it seemed like every 10 minutes someone was coming in to bother me or move me around. I never threw up but I think the only reason is because I wasn’t eating anything. Half a saltine was agonizing to get through, it was just horrible. All of this was on top of starting to realize how different my body had become. Getting up and down to use the bathroom was physically very challenging, I had to call for help from a nurse just to pee. Being vertical made it very obvious that my breasts were completely gone. I had on what basically amounted to a pink tube top over the incision site, and there were a few pads on top of the skin but under the top. It was just very disorienting looking down and seeing nothing. It’s something I’m still not used to and honestly it just makes me a little sad. Anyway, all of those things combined were just making for an awful day.

Unfortunately the next day was still not going well. It got so bad I was put on IV fluids again and my doctors were called to reevaluate my situation and try and stop my nausea. The doctor’s best guess was that it was either the oxycodone or the antibiotic and so I was taken off both. Things were still pretty hazy but I was finally able to start eating a little bit which helped things significantly (as eating always does). I was told that I would stay in the hospital one more night (Monday night) so I could be properly monitored and then finally I could go home. I was excited to return to my own bed and more importantly my dog, but the idea of being away from all the medical staff freaked me out. What if something happened to me? I know my family is smart but they’re not all trained medical professionals and not in a huge building full of supplies. I knew I would be okay, but still it was a little scary. Monday night I had a small anxiety attack on top of all the other fun pain stuff I was doing, just another ingredient in this cocktail of fun. I remember waking up every two hours that night to take pain medication. That was the norm for my entire stay though, so nothing crazy. For some reason that night it just seemed to take longer to fall back asleep. Everything was still pretty awful.

Tuesday morning finally rolled around, and I just would not wake up. My two hour pill regimen aside I was asleep until probably 11 that day. My dad was kind enough to order me some oatmeal two hours earlier, and I managed to eat a few cold bites. By about noon all the stuff was packed and I was being carefully maneuvered into a wheelchair. I know I was being slowly rolled through the hospital but with how little I had moved in the past few days it felt like I was flying. I made it to my mom’s car outside and felt like I ripped open my wounds again trying to deposit myself into it. The car ride was incredibly painful; every corner felt like my body was being mashed into itself. Small bumps and potholes caused audible groans. It was a short ride but it was far too long.

Upon arriving home, all I wanted to do was rush to the front door and pick up Rory for some sweet puppy smooches I’d been missing so much. Sadly, I’m still not even able to pick up my sweet doggle (yes that says doggle, it’s a real term, don’t care what you say), all I could do was watch him paw at my legs and just say “I’m sorry buddy” as I tried to bend down to pet him. I couldn’t even bend down without the blood rushing to my chest and feeling even more pain. It was very sad. Even more sad was the fact my mom insisted on putting clean sheet on the bed despite the fact they had been change the night before I left for surgery (less than a week). I was exhausted from traveling and just wanted to take a nap, and instead got to watch my mom and dad argue over whether or not I needed new pillow cases. (dad was right, didn’t need them) They finally finished and I passed out for about 3 hours.

I have never been big on naps. My father told me that even as a 2 year old I just had no interest in them. I’ve never felt refreshed after sleeping, just tired for the rest of the day. This whole thing has been really weird for me in the sense that for about a week and a half I was actually taking naps. It was strange and honestly, I know this might be blasphemy to some people but I still just did not like them. They helped but my sleep schedule was completely blown apart. I would try to go to bed around 10 and be up by 1am, unable to fall back asleep until 3am. When you can’t get out of bed on your own, that time is really not fun. A few days ago I was finally able to stay away for a whole day and I was so happy.

It’s strange how the little achievements every day are so exciting. The first night home, I was able to pee and pull up my own pants. HUGE achievement! Little things like that get chronicled in my mind and it’s really thrilling! There should be x-box achievements for real life events. I’m seriously considering making myself ribbons or medals. We’ll see how adventurous I’m feeling in the next few days but incase I fail to chronicle my greatness in award form, here are some of my proudest accomplishments of the past week:

*Retrieved a grape popsicle all by myself (including opening the freezer door)

*placed 5 remote controls all within arm’s reach on a small table.

*Ate entire bowl of oatmeal and bowl of apple sauce in one swoop

*Sat up from chair on my own

*Decreased usage of narcotics to only 2 pills a day

*Walked around the block once

*Got a non button on shirt over my head

*24 hours, no urge to vomit

*Able to sit on and get up from the couch

*Finally used my cell phone again

*Ate chocolate

*Got out of bed all on my own

That last one was HUGE for me! It took so long and it’s still a big challenge for me, but I can do it damn it. I look weird and there’s a lot of kicking involved but it works! The point is just that I’m trying to celebrate little things as they come. This surgery is huge and awful and I need something to cheer me up.

My life isn’t incredibly thrilling right now. My days are spent either in a chair or the couch. I play video games and watch Netflix. (Did you know the whole series of Dawson’s Creek is on Netflix? Neither did Kris and I’m pretty sure he wishes he still didn’t know) I’m hoping to be up for visitors soon, it’s just hard since I really don’t have much to talk about and I get tired really easily. I’d feel bad if people were to come over only to have me crap out 15 minutes into a visit because I’m tired or just want to sit and read. Hopefully soon though.

I’ll soon have some more interesting updates on my final pathology, chemotherapy, starting reconstruction, and the bane of existence that are drains.

But right now, I’m tired, so I’m going back to Capeside.