Life is a journey… | the ramblings and writings of a guy who prefers to write on paper, but can't live without the internet…

Day 9

Most nights since this began, I can’t help but get drowsy as the sun sets. My days are long, physically active to the limits of my abilities. My abdomen has been cut open, my intestines operated on, I’ve been diagnosed with Stage IV Cancer, I’m struggling. And the magnesium they give me via IV also tends to put me out no matter how much energy I have. So by the time the sun sets I am pretty done and ready for a long nap. Since the colostomy surgery, they have given me melatonin to help me sleep. Normally it makes an amazing difference.

Last night was a tough night. I couldn’t sleep no matter how hard I tried. It was very rocky for a few hours, but finally around 3am, my eyes popped open and I wasn’t the groggy, half-coherent awake that I usually wake up with, I was just freaking awake. So I started playing with my phone, if I wasn’t gonna sleep I had no reason not to. I noticed a message from an old friend back home.

I was having a VERY unhealthy moment, ok?

I misunderstood pretty much everything that he said (except I did acknowledge and appreciate the good vibes). I replied to something in a wrong way, then tried to cover it up by asking about something related to my mom…and that’s pretty much when my night went off the rails completely. I begged off the rest of the conversation and turned off my phone and cried.

Since the diagnosis, I haven’t had a good emotional breakdown moment. I’ve had lows, I’ve had a few tears. I haven’t broken down yet. I’m trying to fight, and I know that positive energy and positivity are key here. I wanted to get the surgery over with and the pain to subside so that I could make a conference call and just have a full blown emotional break while some of my closest friends comforted me.

That’s not what happened, I ended up breaking down a little last night. Now, I’m still gonna need a full blown, 4-alarm, freak out, cry-out, breakdown. And soon. But this is all to make the point I didn’t sleep last night.

Even though I barely slept, the morning started off with good news. When the surgeon team came in this morning, they said they would bring the pain specialist in to look at removing the epidural. This would mean that I would be able to take a shower, something I last did a week ago, and something I had added to my own ‘Daily Goals’ board in my room. They also removed the drain from the surgical site and a few staples because of a concern of infection, this way they can keep a better eye on it and draw infection out instead of letting it fester inside my abdomen. They also upgraded me from ‘full liquid’ diet, to ‘soft foods’ which was super exciting (it also means my liquid cutlery pack with my meal, got upgraded to a standard cutlery pack)(which means not just a spoon, but fork and knife, too)!

After all the good news, the docs left my boyfriend and I alone for a bit and the nurses changed shifts. We celebrated big time at the thought of me getting a shower, and he was so sweet that he even brought the clippers and nail clippers to trim my beard and let me clip my nails. I was rapidly thinking about the shower more than the food and I’ve been constantly starving for days!

So the pain specialist came in, and before I even knew it happened, she had the epidural out and my back was able to be scratched which was another spot of heaven. Then was breakfast, it’s awesome when the hospital food is something that you craved for a week and can actually buy for yourself. I’ll be having a lot of vanilla greek yogurt for breakfast for a while!

After breakfast, my brother showed up for a bit to check in on me. I hated that he left, but it was also shower time, and I was like a kid on Christmas morning waiting for it!

The bath was glorious, but since the epidural had been out for a while, I was having some pain in the stitching and my lower back started hurting because I have been told to NOT use my abdominal muscles for much of anything (have you ever tried to sit, move, walk, without your abs). Pain in the shower was ok but very uncomfortable. However, my boyfriend is pretty amazing and followed all my little requests and directions while successfully showering me, avoiding the surgery spots, and cleaning me thoroughly. After the shower, I got back into fresh linens on my hospital bed and relaxed my back some more. As I cleaned my ears, and clipped my nails, my buddy trimmed my beard and in general made me feel pretty fucking special and cared for. If you’ve never let your significant other do things like trim/shave you, it’s absolutely an experience that makes you feel like the center of the world.

Later this afternoon, physical therapy came by to help teach me stairs without abs, or basically making sure I wasn’t gonna kill myself falling up or down a flight to get back into my apartment when I am discharged. I did great with that. My balance is much better, I don’t get quite so tired, and now that I am eating more, am regaining some strength. I came back and finished my leftovers from lunch and relaxed. The whole time my stitches were getting more and more painful and my lower back was also starting to really scream.

Today also marked what is hopefully the very last IV. They intermittently have had to give me infusions to keep my electrolytes right or deliver antibiotics, but that’s been reducing and today may have been the end for a while.

The day ended as a very normal Sunday for us…he was doing payroll while I watched cartoons. I would have snacked but I really wanted to write this out. Writing is going to be huge in my journey. And it took far too long to put these words on paper compared to my practiced days a decade or so ago. But it’s not how long it takes, or actually how bad it is. I need to write this down, it’s how my brain processes the world around it. So the more of this, the easier my recovery will actually be.


What do I need?

  • lots of support, love, laughter, positive energy, prayers, etc.
  • patience and understanding, this isn’t easy to process personally, I’m scared but optimistic
  • people who are willing to simply sit at my side and hold sacred space for healing. I may not feel like talking, I may not feel like eye contact, but I know when people are around me and it does me a world of good just having folks in the room, even when I don’t talk to you directly.

What I DO NOT need:

  • telling me what to do, I know I need to fight, but this is MY fight, if you can’t provide support in a way that doesn’t involve telling me how to deal with this, then just send heart emojis and stay quiet, cool? (And no shaming anyone about this either, this is an all positive all the time zone from here on out)
  • repeated texts or calls…processing this through is not easy, being constantly reminded that someone doesn’t know everything is a draining experience and means that I may have to keep repeating things that are not positive or uplifting. This is an all positive place for now, clear? This doesn’t mean I don’t want to hear from you, just that I need you to understand that I may choose not to reply or not provide detail.
  • anyone doing the above to Lino, we are a team, we have a plan, we can execute the hell out of a plan, so your job is support and love, not harassment or trying to make this about anyone but me and him, cool?

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