Tomorrow makes it 8 weeks since my surgery on December 15, 2014 for removal of my colon cancer and giving me a temporary ileostomy. I started back to work last week and it feels good to be back normal. My thoughts are still sluggish sometimes but that may be partially due to the heavy chemo too. My body still aches and I still have a lot of fatigue every day. But mentally and spiritually I'm feeling clearer, happier, and stronger every day. This journey so far has taken a lot out of me but I'm excited to be this far and feeling this great.
The only way to catch up on this blog is to just give a stream of consciousness telling of what I remember rather than trying to do a tidy day-by-day replay. I feel bad that I haven't felt like writing in so long but I was so weak, can't really blame myself. Here you go:
Monday, December 15, 2014
Went into the hospital at 5:30 am, surgery was at 7:30. About a six-hour surgery, successful according to the surgeon. I remember waking up briefly and being in and out of consciousness while being wheeled upstairs to a recovery room. The first thing I remember when fully waking is saying over and over, “It hurts so much, it hurts so much.” The pain was incredible, especially in my low back. My family has said I continued to say this over and over.
They also told me that the surgeon warned them prior to seeing me that my face was extremely swollen due to the position I was in during surgery and the fluid running to my head. My mom and my kids told me that when they first saw me I was unrecognizable. My daughter cried so much when she saw me. I remember that. I felt so bad for her at the time although I had no idea why she was crying. No one gave me a mirror or took my picture. I kind of wish they had.
Jumping ahead to the next night…the incredible pain in my low back, as I figured out on my own, was a blockage in my bladder catheter. I remember calling the nurse in to check the catheter. At first she said it was fine, then she discovered it was clogged and that urine had been backing up for a day and a half. She immediately fixed it and I had instant relief of the most intense pain I’d ever had in my life. Honestly I think my bladder could have burst if I hadn’t figured out that was the problem. That was Tuesday evening.
One of the first things I got to eat was a grape Popsicle. God it was good! Popsicles are my favorite.
This was the first time I was up from the bed and sitting in a chair. The pain was so great, and it was so much work to first sit on the edge of the bed, then to stand, then to sit in the chair. I got a major hot flash doing all that. In the middle of eating my Popsicle I got nauseated, tried to not to be sick, but threw up a little. Ick. There was a bucket. I still finished my Popsicle.
Looking at this picture, I now remember that my ostomy nurse had just walked in, my kids had just shown up, and one of the physical therapy folks came by. My mom was there and my nurse was there. This is what it was like a lot that week, everyone showing up at once. It was overwhelming for me.
NOTE: At this writing, weeks later, I now realize that the biggest change affecting me was my energy body being all out of whack. You know how intrusive and disruptive a major surgery is to your physical body and your emotions? Well imagine what your energy body goes through at a time like this. That's why now, 8 weeks post op I'm feeling pretty great. It's not just about the physical, it's about my energy, my spirit. The more I get back to my normal routine and normal self, the better I feel because I'm getting my spirit back.
By Wednesday morning my surgeon popped in to check on me. Said he had some good news and bad news. I wanted the bad news first. Out of the 16 lymph nodes he removed, 3 were positive for cancer. I felt devastated. I wanted there to be no lymph no involvement. That would have made me feel like I had a fighting chance at beating the cancer. Now with already lymph node involvement I felt like my safety net from stage 4 cancer was gone and I could have metastasis at any moment. I was very, very sad that day. I cried.
Dr. Strobos, my surgeon, said it definitely wasn’t the news he wanted but that he still felt confident he’d gotten all the cancer. He explained the dimensions and margins and that it looked so good, but it didn’t make much sense to me. I took comfort in his confidence though.
“I gotta ask you something. What happened to my vagina? It's so, big!" An odd question, I know, but it was like my vagina was inside out and dangling between my legs. "What the hell happened to me? I'm so swollen!" I was downright scared. "This isn't the narcotics talking, I'm being serious." He just looked at me for a moment, straight-faced. That scared me even more. This is a man I hardly know at all, so I couldn’t read him. And he wasn't saying anything.
Finally he said, “Wow, really? Your vagina? Gosh, usually it’s the guys who complain about being swollen after surgery. You should see it. I mean, their cojones are this big.” And he used his hands to demonstrate. “I’m gonna have to tell them, you think you’re swollen, you should see what happens to the women!”
Ok, so he had me. I finally got that he was pulling my leg. Oh God, it hurt to laugh and I was trying not to. I said, “Stop it, stop making me laugh, it hurts!” He cracked up and I said “Get out of here if you’re gonna make me laugh.” That was great. I’ll never forget his face. He acted so clueless!
Ok, back to seriousness…what happened was that during surgery they had me on a tilted table so that’s why my face was so swollen and unrecognizable because of all the fluid from the surgery. Then when they had me sitting in bed, guess what? All that fluid went south. My abdomen was enormously swollen, and I naturally expected that. But dang. My vulva was literally slapping me between my thighs when I walked. Not a pretty sight to see. And no I did not take a picture of that. I’m not exaggerating either. It was freakish and gross. NOTE: It took a good week and a half or so for all that fluid to get flushed out or absorbed. Remember, I like body parts to be in their rightful places, so it was no fun seeing myself naked. Glad too when my abdomen shrunk back to normal.
The days that week seemed like forever to me although they all rolled together. My consciousness during that week was moments being awake followed by short sleeping stints. The pain button releases your narcotics every 6 minutes. The problem is that you have to be awake to push it. It’s a quick relief and good sleepiness taking over, but it’s short. Then you wake up in pain again. It was impossible to get real sleep because the nurse is coming in to check vitals again. Or coming in to check my blood sugar. Or to give me insulin. Or to take me to the toilet. Or to help me get repositioned in the bed. Or it’s the surgeon. Or family members. Or the ostomy nurses. Or the respiratory therapy folks. Or the physical therapy folks. Or the dietitian. Or room service bringing me the meals that I still can’t eat yet. Or housekeeping asking if they can clean my room.
Long story short, hospitals are no place for rest. There were times when I had to literally request that no one enter my room for at least an hour or so just so that I could sleep. I had them stick a note on my door!
The pain was incredible that first week. I wasn’t able to move myself, so had to have two nurses at a time to move me. That’s why there’s an extra sheet under you, so they can each grab a side, and 1, 2, 3, they pull you up the bed. I had to tell them, teach them, “do it slowly”. I know it was a lot of work for them but the pain was indescribable. I must have apologized a million times that week for all my requests. But I’m a person who speaks up, speaks my mind. In return I was told many times that they appreciated my independence, because I was mentally alert enough to communicate clearly and do a lot for myself as I began feeling better.
Like manage my own insulin. That was frustrating, being told how much insulin they were going to give me, telling me I wasn’t allowed to be on my long-acting insulin yet because I wasn’t eating yet. I tell ya, that got me to eat. There’s nothing worse than not being able to do your own care. So I tried to eat. It wasn’t much but at least it got me back in control of my own insulin doses. Most of the time that week my blood sugars were in the high 200s and that felt like crap. Gave me headaches too. I was already suffering caffeine withdrawal. (But the good news is I kicked my caffeine addiction. Here I am typing this 6 weeks out, and it’s wonderful to not be addicted to caffeine anymore).
I had brought a back scratcher from home. One of those long wooden sticks with a curl of “fingers” on the end. I know how itchy I get from my body swelling from fluid and from narcotics, and I itched from head to toe nonstop that entire week. That back scratcher came in so handy for that. It also was good for helping pull things to me, like the box of Kleenex or whatever.
I remember they had a little personal fan on a side table near the bed. That came in handy every time one of my hot flashes hit me. I woke up several times a night with horrible hot flashes, me sweating so bad that the bed sheets had to be changed.
I remember having nosebleeds because of the heparin. Had to have that to prevent blood clots. But the nosebleeds resulted in clotted blood in my nose that would cause post-nasal drip during the night while I slept. I remember waking up in a coughing/choking fit a few times. And the kind of pain I was in, it was impossible to actually cough for real. The best I could do was try to roughly clear my throat. At one point I literally thought I might die from not being able to cough. Thought I’d just choke to death on my own bloody snot.
I finally figured out that if I hold my right side as hard as I could, I could then manage a weak cough, enough to clear my throat. My side hurt constantly. By Friday my surgeon came to take out the tube that drained bloody fluid from the surgery site. He yanked it out when I wasn’t ready. I hadn’t been holding my side, and it hurt like hell. I told him I needed to hold in my side, and when he realized what I meant he thought I might have a hernia. So he ordered a CAT scan for me. Not fun. It meant I had to drink all that fluid again. But the CT showed no hernia, so that was good.
Here's what family visiting you in the hospital looks like. (Geez, did they think I was sleeping?) I love this photo! I know a lot of the time I must have been pretty dopey so I don't blame them.
The right-side pain continued for weeks after I was released and as best as I or anyone can figure, it was just extremely swollen muscles. But to do anything, anything at all, I had to hold my hand tight over my right side just to move.
In the hospital my nurse had to help me to sit up, then to stand. It hurt like hell to sit up. The pain went across my abdomen like a sharp knife, but once I was standing it was ok. I had to use a walker while in the hospital. It took my breath away just to sit, stand, and walk.
Using the toilet was interesting. Once they got the bladder catheter out of me I had to ask for help each time I needed to go pee. Then I had to sit there on the toilet and try to remember how to pee! It was like, everything inside me was so swollen, so painful, and so numb all at the same time, and I couldn’t find the right muscles to squeeze to get my urine stream going. Then when I finally figured out what to squeeze, only a few drops came out. And I’d have to sit there and try again, and again.
My urethra continued to hurt constantly but I never had an infection. It was just extreme irritation from the bladder catheter, and bladder irritation from the surgery. They said the bladder, being so close to the surgery site, got very irritated and was a big source of my pain. (Not to mention it nearly bursting!)
Then Friday I had to have a bowel movement. And I mean an actual one, from my anus. That really had me confused. I thought my surgery meant I was closed up down there??? But I felt it, and it was gonna come out! I didn’t even bother buzzing in a nurse to help get me to the toilet. I got myself there!
I figured out how to find those muscles too. If I held my right hand tightly on my right side, and used the fingers of my left hand to push inward just below my belly button…and if I pushed and squeezed my abdominal muscles until I felt them pushing against my fingers, I realized I was squeezing my rectal muscles. And finally some stool came out. I told my surgeon exactly what was going on…in fact I said “how come I’m still able to poop? I have to have a bag on my stomach AND I have to still poop like normal?” He said it was probably just residual from my prep, like when I was getting cleaned out before the surgery, not all the prep had come out so this was leftover. I didn’t really buy that explanation, and since then I've had it several more times.
Saturday, December 20, 2015, I was discharged by surprise, five and a half days after my surgery Monday morning. By surprise I mean that my surgeon had mentioned me going home probably Sunday, and then without me knowing, my nurse had called him and said I was ready to be discharged now. I later found out she did that because I was "so independent".
I remember that for the last two days I didn't want to lie in bed anymore but just sit up in the big comfy chair. I was right next to the bathroom that way and I could just get myself up and go without waiting for help. I wasn't trying to be stubborn, it's just that's how suddenly there were times I needed to be on the toilet. Still prep water coming out? I still don't believe so.
When it started being Saturday afternoon around 2 pm or so and no one had come around to take me out into the hallway for a walk I was going to just get my walker and go out there. And then a cute man walked into my room (this is why I always kept the curtain pulled, no one knocks!) and he said he was from physical therapy. I asked if he would take me out walking, and he said that's exactly what he was there for. He wanted to make sure I could handle walking up and down stairs by myself, and I was able to just fine. We then walked around the hall a couple times, talking, and then back to my room.
Sitting in that big chair was a sundae and a note! I said, "What's this? Who did this?" I was so surprised. And he said, "This is our way of letting you know you're going home." That was pretty sweet. Everyone had planned all this behind my back, getting me out of the room and all. He left so I could get dressed and pack my things. I called my family to let them know to come pick me up! I had a few bites of the sundae but couldn't finish it so I let Abby have it when she got to the hospital. I was really excited to be going home. I think once I started becoming more independent and actually wanting to be up and moving around, it made all the difference.
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