Oh the horror...

I had a radical cystectomy, my bladder and urethra removed, 18 days ago (for those of you that flourished in the 80's, there is another definition to the word radical than what you used/ still use.) This recovery has been harder than any nightmare could have forecast. Before surgery I met with several doctors and nurses, I read and researched, I found out as much as I could about the surgery, the recovery, and then living with it for the rest of my life but still I was in no way prepared for what was coming… 

There is so much to write and truth be told I am still in the trenches. You can’t tell your tale of heroism while you are still battling, you don’t even know if you have won or not yet… But if I waited until I was on the other side of this whole deal I’m afraid I wouldn’t remember the little details that make this story more than just a story. So I decided to break this up into several blogs starting with one just about the actual surgery and my hospital stay.

For most surgeries that would be half the story but for this one it’s really just the beginning…  

On May 19th I woke up at 4am. It was cold and dark that early in the morning and I wanted to dissolve under the hot spray of the shower and slowly slip into the drain with the soapy water. I huddled under that water reveling in it as it rinsed my normal body one last time. I watched the path it ran after picking up bubbles from my soapy head. It slowly slid down my neck, chest and stomach then crashed dramatically on the floor.

Hold on… I acknowledge that this is starting to sound like a steamy chapter from some harlequin romance novel you bought at a garage sale for a dime but bear with me, there is a point…

I was just more aware of my body that morning than usual. I’ve never had the best relationship with the old thing… It has caused me lots of pain over the years and never looked quite like I wanted it to but as I stood in the shower early that morning I knew I was looking at my familiar body for the last time. This “normal” body I referred to was far from perfect.

It had been through a lot in it's 26 years and 363 days. I have a smattering of freckles left as evidence of a happy childhood in the sunshine. There's a successful treasure map of stretch marks that led me to the loot of becoming a woman and then a mom, not the prettiest marks but ones that I wear proudly after earning them. My breasts. Oh those dear old things! By 27 I should still have a perky pair coveted by my elder women but these biddies have been through the ringer! Hormones- false and real- raging through me from an early age and a pregnancy then nursing a very enthusiastically thirsty baby for 14 months, and so many weight fluctuations over the years. They currently look like the dilapidated, 2 week old helium balloons that are dancing around my bedroom right now. They still have some life left in them but they are a little worse for wear and not flying as high as they once did… Of course as practically  every other woman in the world complains, I also have a decent amount of... Call it what you will... Flab, jiggle, blubber, lard, chub, chunk, fat. I have no dramatic story leading to that flaw except maybe a towering stack of bowls that were filled with ice cream late at night. However, the most dramatic imperfections are the scars that mar my body. When I remember to be deep and thoughtful I let them be a reminder to me that bad things will happen and though traces of those things may never leave your mind or soul they will fade and new memories will cover them up until just maybe they're harder to see or remember. But mainly I’m quite shallow and I just think of them as scars. Most of these scars were made by a doctor yielding a surgical knife, accessing my insides with hope. The results varied from extremes but the best one of all was the big one across my pubic bone that my son was pulled from but they are all as much a part of my “normal body” as my nose that matches my Moms and Grandmas and my feet that match my Dads.  

Now where was I? I watched as the soapy water raced other droplets down my totally imperfect, yet normal to me, body. I stayed in there until I had no more time. Then quickly dried off and got dressed in a comfy outfit. I dredged down the stairs and out to the car.

You wouldn’t believe the next part of the story unless you knew my family. Things just don’t go smoothly with us, almost ever. Early that morning I climbed into my car and snuggled into a blanket and prepared for the hour long drive to the world renowned University of Washington Medical Center. My husband was going to spend the night with me so he drove his car and I rode in my car (our super hip crossover that some might call a van but are totally incorrect because it’s clearly a crossover) with my Mom. I’m sure we were going over everything we were suppose to bring to make sure we weren’t forgetting anything as she put my car into reverse, before I knew it we were jolted and heard a bang. She had backed into my Dad’s wheelchair accessible van. It was pretty gentle so after a good chuckle about our luck I blew it off and said let’s just go. (There ended up being a sizable smash but I'm just pretending like there isn't because I only have so much room for stress and I'm al the limit.)

We got to the hospital right around 5:45 and of course had no problem finding a parking spot that early then I checked myself in and was called back into pre-op pretty quickly. They said I could only take one person back with me at a time. I didn’t like that. My Mom and my husband, they were my team. They both have their own jobs and their own strengths and weaknesses. I couldn’t make that decision so fortunately my husband chose for me and said my Mom could go with me first then they would switch.

They put me in a tiny little room separated by other with just curtains and then they left me to wait. Nothing happened for quite a while. There was a general sense of nervous energy buzzing around but it was relatively calm. Then one nurse came in and started asking me questions and pretty soon there was 5 medical people in my little cubicle asking me questions, putting things on me, covering me with hot air filled blankets, looking at my arms for veins, having me sign this or that, introducing themselves and shaking my hands. It was a lot. Not surprisingly my veins were feeling as overwhelmed as I was and they were in full on hiding. Those little guys have been through a lot over the years and they weren’t great to begin with. Several people scoured my arms for a vein until they eventually had to pull out an ultrasound machine to see my tiny, deep, rolling veins. After covering my arms with eventual bruises they finally found one tiny vein on the inside of my wrist just big enough to put a teensy IV in.

During all that hubbub it was made clear that they were going to do all pre-op stuff quick so my Mom kissed my head and with all the courage of a man diving into an alligator pool she told me she loved me and would see me soon just like she had before the 29 previous surgeries then before too long my husband was in the chair she had vacated. I don’t really remember much after getting the IV because they started some nice sleepy drugs. I’m sure my husband kissed me and whispered encouraging yet sweet things to me because I know him but I can’t be sure.

Once asleep they rolled me into the OR and got to work. First they put in a bigger IV to pour in all the meds to keep me safe and asleep for hours while the doctors worked.

The surgery went perfectly! They used a robot to get my bladder and urethra out of body while keeping my vagina intact. Then they cut a piece of my small intestines out, reconnected it without missing that piece and then hooked my ureters up to it and pulled the other end out of my abdomen. Then they folded it down like a turtleneck to make a stoma for the urine to come out of. I’m sure they did more things, maybe tidied things up here and there but that’s the jist of it. Either way, they did a great job and it was over much sooner than they predicted. But I didn’t know all that until much later…

Next thing I knew, I was waking up confused and in a lot of pain and very nauseated. My post-op nurse used the phrase “cool beans” frequently, way too frequently. Even though my pain was spiked and my nausea was fierce I was alert and not vomiting so they were getting ready to transport me up to my room and to my family when suddenly I was vomiting. 

Think about the last time you vomited... What muscles hurt the most? Your stomach? Yeah... I had just had those sliced and diced and rearranged! Oh the horror. 

They tried to get the vomiting under control but it was clear real quickly that wasn’t going to happen. So I vomited the whole time some guy pushed my bed up to the room I would be in for the next few days. 

Then I vomited once I got to that room. My husband and my Mom were there and that helped but I couldn’t stop. I threw up for almost 12 hours after surgery. I had nothing left, my body had to make up bile just so something could come out. Eventually I was just dry heaving and shaking with exhaustion and pain.

I had finally realized that I would vomit a few minutes after I would push the button that sent pain medication into my IV so I stopped pushing it. I was just hours after major, major surgery and I wouldn’t take any narcotics for over 6 hours.

I just remember lying in that dark room shaking and crying. I didn't want to do it anymore, I didn't think I could continue to. My mom, my husband, my dear cousin and multiple nurses took turns consoling me and holding random vessels for me to vomit into. Oh the horror.

After several attempts of adjusting meds they found something that worked, I finally stopped vomiting and the pain was some what controlled so I slept... For days.

I have no memories of Tuesday.

Or Wednesday although thanks to later told stories I know it was my birthday, my parents visited and my sister came later with party hats and festive decor then spent the night with me. I also vaguely remember (with help from my sister) a nurse taking me for my first walk and me telling him I was walking so slow I saw snails passing me and followed that with an amusing quip about slugs being indigenous to Washington (which I have no idea if that's true) and them basically being just snail strippers…

That same night a guy delivered me sherbert (I was finally off of just clear liquids and moved onto regular liquids) and while coming into my room he was talking to someone about a golf game. Then he set my treat on my tray and said “some cruise ship huh” trying to be sarcastic and funny about the fact that he was delivering me sherbert I guess… Anyway somehow in all that I thought he was telling me something bad happened so I said, “oh no!” He looked at me strange and then left. Then I looked at my sister serious as could be and said, “were any cruise ships harmed in the making of this sherbert?”

                                     

My sister and me celebrating my birthday in style. I am so very blessed by our friendship and sisterhood. She will always come when I call and even when I don't. She know me more than most people in the world and would literally do anything for me. Our bond is stronger than any other and cannot be broken. . 

Thursday is really foggy too... Probably more sleeping. Although I was with it enough to post a selfie... 

Then Friday came, it was kind of a momentous day for my recovery... I had been working with physical therapy and just started occupational therapy and man did I need it. I could barely stand without my knees buckling and had my physical therapist not caught me I would have fallen twice.

I couldn’t even get to the bathroom that was just steps away from my bed, which was super frustrating considering I was having diarrhea 24/7. So they brought in a bedside commode. I was sitting there when my occupational therapist first came in and I kept saying I was really dizzy and she just kept telling me to try to relax… Next thing I knew I was basically naked on the floor and the OT lady was asking me why I was on the floor…

That tiny incident sealed my fate.

Once you fall in a hospital you are labeled. You are suddenly wearing a giant scarlet letter. Each medical personnel that came into my room knew about my new label as a “faller” and I was instantly treated differently.

It’s not like you’re given much privacy or independence in the hospital ever but once you fall… You don’t breathe without having someone watch you. They even put the bed alarm on so I couldn’t get out of bed without them knowing. Like I was going to try to make a break for it?!?

Worst of all… I couldn’t go to the bathroom without them watching… remember the diarrhea I mentioned? Oh, that was just horrifying. I am a lady gosh darnit, not some cave woman! I do not burp or pass gas in front of people and usually I don’t even use any restroom other than my own to do such an act. Now I had to sit on that bedside commode and have TWO people watch me. Not just in the room, changing the sheets on my bed while I do my business but standing right in front of me, watching me. Oh the horror. I couldn’t do it at first. My stomach was cramping but my brain just couldn’t command the muscles to relax enough to go. This was my 4^th day with the same nurse… male nurse… and we had become chums! We chatted about this and that, he helped me with other things, emptied the blood out of drain that hung out of me and my catheter regularly but I just tried to ignore that and think of this guy as a super friendly waiter up until this point.

That night I was thrilled when it was time for shift change and my pal brought in my two new women nurses! What a relief! Of course the first time I felt the need to go the nurse assistant came in… who was also a man I had been chummy with up to this point. I begged him to call my nurse to come help instead so he did, “Hey I’m in room 7340 the patient would like you to come help her to the commode… Apparently I’m too tall to help,” I quickly told him it wasn’t his height that bothered me which he thought was hilarious.

Glad I could amuse the staff in my humiliation…

I get it! They do this all day long, actually they probably do even worse things throughout the day BUT I don’t. I never got used to that. The last full day I was at the hospital my nurse decided I had been doing well and I could not only go on the actual toilet but she could leave the bathroom with the door ajar. My husband didn’t agree. He didn’t trust that I was as strong as I was claiming.

Guess what? It’s even harder to… ehhem… have a bowel movement in front of your husband than a random guy nurse. Yes, we’ve been together for 7 years and he has had to help me do things that most husbands get to wait decades to do but this was just a new level. I got through by turning on the shower so that he at least couldn’t hear the sounds that my newly redesigned bowels were making… Oh the horror.

At least I got to shower after that. Wash away a weeks worth of sweat and tears as well as the shame of having to relieve myself in front of dozens of people. My hair and body felt so clean and fresh but the shame lingered….

Anyway. I got off track. So after my “fall” my physical therapist and occupational therapist had a meeting then talked to my doctors and they were convinced I was going to need to go to nursing home after I was discharged from the hospital but before I went home. I was really upset about that for a while and then I decided I was going to do whatever I needed to do to get well enough to go straight home. I had a lot of people praying for me physically and also emotionally while I was busy getting to work.

I talked to several different people who wanted to know every detail of my fall. I’m sure my nurse and the OT that was in there when it happened had piles of paperwork to do but I was more worried about why in the Pete I was falling. I was sitting when I fell, it wasn’t like my legs gave out like what had almost happened before… It was really more like I passed out. So that night, at shift change, I asked the nurses to start writing on the white board in my room when and what meds they gave me. I realized that any time my pain was about an 8 (basically every time they asked me what my pain was) and I wasn’t do for more narcotics they were just giving me IV ativan (a heavy duty muscle relaxer). I was just smashed all the time. I was sleeping on and off so much I couldn’t keep track of anything and my dear nurses were just trying to keep me comfortable and honestly it probably wasn’t a bad thing that I was basically unconscious the first 4 days of recovery. It wasn’t anyone’s fault but I just knew at that point I needed to take some control of the whole situation. After that the nurses and I worked together to keep all my meds a few hours apart so there was always something I could take if the pain or nausea got out of control and I wasn’t taking several things at a time making me a zombie.

By Saturday I was doing much better! They were able to remove my drain, which was the single most painful thing they did to me while awake. I couldn’t even believe how bad that hurt. If my understanding is correct, they put a tube with little holes on it in my abdomen so that any excess blood or anything can drain out into this grenade looking thing. It just hung from my stomach for days…It was disgusting. They would come and empty it and it made a disturbing sound as they squeezed the plastic bulb of blood to empty it. So when they removed it the doctor told me it might hurt and then yanked. I literally get shivers just thinking about it. Apparently the little holes on the edge of the tube can get caught on things… That’s all I will say. Once again… oh the horror. But it was a great sign that my body didn’t need it anymore (so they thought, more on that later) and they could take it out.

Once I recovered from that trauma I made it my goal in life to walk the halls as many times as I could. I finally made it to the goal of 3 a day and I even picked my speed up to where I actually may have won a race with a turtle, I left the snails in my dust!

3 walks. Boom. 

Truth be told I might still be in some rehab place if not for this man. He pushes me to be and do the very best and work the hardest I can. I rarely appreciate it at the time, in fact I usually get so mad when he pushes me but  where would I be if I didn't push the boundaries.  

I was also begging for a shower! Since I had fallen everyone was waiting for OT to approve it but it was memorial weekend and that meant they wouldn’t be there until Tuesday… After being in bed for 6 days, vomiting, having diarrhea, and feeling miserable the only thing in the world I wanted was a shower. Each time someone new came in I asked them what they thought about me showering. One time I mentioned it to my Mom while the medical assistant was in there and she was horrified and offended (not as horrified and offended as I was after this conversation) she said in a very thick accent, “You no need shower! I gave you many special baths. You shower later, I keep giving you special baths. You don’t want shower.” She was referring to the multiple times I had been happily napping when she would come in with an arm full of supplies and she would rip off my gown, sheets and blankets then wipe me with “special” cleaning wipes. I would try to cover up with any pillow or edge of blanket I could reach but she would quickly take them out of my reach saying, “must be very clean, just relax. Feels good.” For the first few “baths” I was so drugged I just slept through most of it and could try to ignore the complete awkwardness of the situation but the last one I was fully conscious and it was just plain weird. She did offer me a wipe to “clean my delicate area” as she called it but unfortunately the other times she didn’t deem me well enough to have such a luxury… So I laid in the bed naked, shivering, and pretty much traumatized for life. Oh the horror. Just when I thought it couldn’t get weirder… my nurse came in and my assailant aka the assistant said, “I ask her first.” No, she definitely didn’t. No matter how drugged or out of it I ever was I don’t think I would have ever agreed to such a…. experience.

Later when she couldn’t believe I didn’t consider her bath as “special” as she did I tried convincing her that I just never feel clean until I can be under warm water. I said, “it’s okay though my husband will be here tomorrow and he can help.” Then that sick freak was like, “ooooh, I see you have your husband help with you take special shower! Eh? Eh? Ha! You like special shower with husband!! Ha ha!” (after reading my tale about him “helping me” go to the bathroom and shower you know it wasn’t any kind of “special shower”) I didn’t even know what to say, I tried to bumble some defense and then just let it go so she would leave my room… Oh the horror. Just writing this makes me want to go take another shower.

Anyway, the pain was still really intense, getting up out of bed, walking and then getting back into bed sent my pain sky rocketing each time. I still needed a lot of medication for pain but my nausea had eased way up so I was almost exclusively on oral meds by then.

Sunday was even more progress! I was finally drinking and eating enough that they could take me off the IV fluids and when I went on walks I unhooked my bed bag catheter so we didn’t have anything extra to carry along with us! I even ate breakfast, lunch, dinner AND ice cream! I was just thriving!

So the next morning when my doctors came in for their morning rounds they deemed me ready to go home! A WHOLE DAY EARLY! I not only didn’t have to go to a rehab facility but I got to go home a day earlier than they had ever planned. Take that.

Of course that was day was full of approvals from different specialists including the physical therapist, occupational therapist, pharmacist (they had to teach me how to give myself my blood thinner shots), and another verification from the urologists.

My nurse was amazing that day and she kept things moving all day but allowed me to rest and still control my pain. She loaded us up with supplies, got me my new wheels (a walker), then I signed a million papers and we were on our way!

I remember sitting in my hospital bed reflecting while my mom took loads to the car and the nurses scuttle around making sure they had dotted every i and crossed every t, it was a momentous day. I kept thinking, the moment I left that hospital my new life would begin. I couldn’t wait to see what that new life had for me! It had been an unbelievably hard week and I knew the recovery had just begun but I had just finished a huge leg of the journey.

I had never been more excited to leave a hospital than I was that day! The moment my mom rolled the wheel chair outside I took a big breath of fresh air only to choke on some bus exhaust and then hurt my still fragile abdomen with coughs but still it was glorious! 

 

I think it was fate that my Mom was on her way when the doctor told me I could go home a day early. She was there with me all day as they instructed us on care at home and then she was there when I finally got to leave! She had her girl back. She didn’t care that her work had really just begun, she just wanted me home! 

Part II of this story is still in production... Coming soon. 

I want to take a second to thank all my amazing family and friends who helped me through this phase of my recovery! Some of you were there with me, some regularly calling and texting to check in, some were waiting for updates and all of you were constantly praying. I'm so thankful for every single one of you. I couldn't have done those 7 days in the hospital without any of you. Also a GIANT thank you to everyone who pitched in to not only take care of Titus but give him a really fun week so that my Mom and Zach didn't have to worry (or at least not worry too much) about him and could spend time with me at the hospital!! We have been so blessed throughout this whole thing!!