June 4, 2020

It’s after midnight and I can’t sleep so I thought I’d write. I got a new apartment last night – signed the lease. I couldn’t be happier. The unit is cozy and overlooks a woodland/shade garden filled with ferns and scattered shade flowers. My cat will love that little view. I feel very fortunate, very lucky that it came on the market at this time. I gave notice at my current place and am now free. Feels great.

The new unit won’t be available for two months which gives me time to get everything in order. I’m excited about my future because of the place – I can see a future there.

So today is the day of the sigmoidoscopy. Soon, I’ll get an appointment with an oncologist and away we will go.

Have to try to go to sleep now. Will catch up later.

Still can’t sleep – the pain is bothering me – so I thought I’d come back here … OK, tired suddenly. Almost 2 a.m. Have to wake up in a few hours so will say so long.

It’s now 4:30 a.m. and I’ve been up since 4. Pain/bathroom issues.

So here I am in my colonic bubble while the world around me rages – first COVID, now mass protests.

Signing off again …

It’s now 6 p.m. It has been a big day. The enema did not go well. I was nervous about it yesterday because I thought that my colon was blocked at least partially and would not be able to take the solution. I was right. It started to back up and flow back out. It was a mess but I did my best.

I felt pretty sick after that and it turned out that I have another fever. (COVID test came back negative). My mom drove me to my appointment so I could lie down. We left at around 8:15 a.m. and arrived at 9:15 a.m. for a 9:30 a.m. appointment. I was in the hospital until after 12:00 p.m. and we did not get home until about 1:15 p.m.

When we arrived, I checked in and took an oral COVID test – answering questions – and was then given permission to go to the endoscopy unit. Once there, I had to answer COVID questions again. There were signs on the elevator saying only one rider and the chairs in the waiting room were turned backwards forcing a distance of at least 6 feet between patients. I was the only one there. I tried to sit but felt too sick and laid down on a banquet.

I was then brought into a ward, got undressed and got on the bed. A nurse came in and asked me health related questions. She asked me what medications I’m on and I told her “none.” Then, she said, “You’re so healthy!” That’s when I told her about the cancer. The thing is – I have always been healthy. I eat well and I exercise. I was a healthy weight. My diet has always been fresh and organic. I cook and bake from scratch. And now this.

The nurse brought me a heated blanket which was great.

A male nurse hooked me up to some kind of sedative (the procedure was one that required sedation). I told them that I was nervous and he told me not to be – that they were glad to have me and everything would go well. He patted my arm and smiled. They were incredibly supportive. Absolutely wonderful. Then the doctor came in and introduced herself. She told me that I had a fever but that they would proceed because my condition is very serious and the procedure has to be done. I felt good with her.

The male nurse rolled my bed into the operating room. I was hooked up to equipment and given oxygen through the nose and under my mask. There were new nurses there and they introduced themselves to me. It was a very positive atmosphere in the room which I really appreciated.

Then the doctor came in. She asked me to confirm my primary care physician and I told her that I was going to get a new one. I asked her if she could deliver the results of the exam and pathology report to me. She said that she would. I felt very confident with her.

Next thing I knew I was conscious and back where I started in the ward. I was not given general anesthesia but I have absolutely no recollection of any aspect of the procedure. The nurse who took my medical history gave me a big cup of apple juice. Then she showed me the pictures of the interior of my colon on a computer screen.

There is a tumor/mass that is obstructing my colon. The nurse told me that that portion of my colon would need to be surgically removed. I asked her whether I would need a colostomy bag and she said that I would not because the tumor is far enough up the colon that the rectum is not involved. Another nurse came in and said that her mother had had the procedure and it went well. That nurse had also had colon cancer. So, I felt hopeful.

But then I started thinking … those nurses don’t know that the tumor has grown outside the colon and invaded my abdominal cavity. So, how can the surgeon remove my sigmoid colon if the tumor has attached itself to other organs? I can’t get the full picture and it is terrifying. I suppose the surgical oncologist will know but when will I get to meet him? Someone needs to talk to me comprehensively about my condition. It has been weeks.

The sedative is wearing off now. I have been drifting in and out of sleep all afternoon. Don’t like the feeling at all.

I want to feel strong again and have another double cheeseburger.

I showed my mother the pictures of my colon in the report. It looks very bad and she is taking this very hard. Tonight I am too.

Love, Molly2923

One thought on “June 4, 2020

  1. It’s possible that while the tumor itself is large, it has spread and formed new tumors in your abdomen, instead of one big tumor. Either way, a blocked colon means they have to do something. In some situations they might remove the tumor, or do what they call “debulk”, which is removing part of the tumor to open up the colon (especially if there’s some issue with removing the whole tumor).
    Having a bag isn’t as bad as people think. When I had my first surgery, I ended up with a bag. The hope was that I’d only have it for a year or so. The idea was to wait until we were sure there was no more cancer in my colon. Then it became clear I wasn’t a good candidate for reconnection because of where my tumor had been. I also have a genetic cancer syndrome called Lynch Syndrome and I decided to have a second surgery to remove all of my colon so my bag is now permanent. The big thing I would say is to do your research and ask your eventual surgeon questions like how much of your colon they are taking. No matter how much they take or whether you have a bag, your bathroom habits will likely change permanently.

    No matter what, I’ll keep commenting and thinking about you. Don’t hesitate to reach out if you need something.

    Like

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