I am still alive. I have so much to say but I can only type with one finger and can’t see all the keys. I had surgery yesterday at 8:30 am and was in recovery until 5:00 pm. The surgery should not have been performed.
It is 5:30 am now and the hospital floor is waking up. I have been watching the sun rise since 5:00 am – I can see it through my picture window – and it is beautiful.
Maybe I’ll be stronger later today or tonight and can write. Until then …
It’s now late afternoon. I’m in pain from the surgery and am typing with one of my hands taped to two IV ports. And tired. So here is what has happened.
Last Monday, I spoke with a surgeon who said my colon had impacted stool and I needed to be cleaned out and given a colostomy bag. He said the procedure was a laparotomy that required only a small incision and took about 15 minutes and was done on an out-patient basis. He booked me for the surgery and set me up to meet with the oncologist on his team.
I met with the oncologist the next day and did not feel comfortable with her. So I made an emergency appointment with an oncologist at a different hospital. I thought he was great and decided to go with him and his team.
My oncologist spoke with the surgeon on their team and they said I should be admitted to the hospital last Thursday with surgery scheduled for Saturday due to the impacted stool. They said they needed to do tests and everything would go quicker if I were in the hospital. Plus they could monitor me.
On Thursday, I was admitted. That was the last day I was able to write this blog. The next day was hell. My vital signs were checked every few hours so I did not sleep much. My blood was drawn at 6:00 am. At 8:00 am I was taken to get a renal scan to look at my kidney function and did not return until 10:00 am. I was completely depleted and given radioactive material intraveniously and another substance. I was then wheeled back to the hall and waited for about 20 minutes for my escort to bring me back to my room. I felt like I was half dead.
When I got back to my room, more nurses were in and out and finally the doctors came in. First, my oncologist came in. He had met with the team and I felt positive about what he said about my cancer treatment. Then the surgical team came in. The surgeon told me that he had to do open surgery (not a laparotomy) to place the bag because he did not know if he was going to do a colostomy or an ileostomy. He then felt my tumor and said it seemed to be moving and might be operative despite the fact that the scans showed it was attached to the wall of my abdomen. He said that because I was so thin with no fat layers separating my organs the scans might incorrectly read that the cancer is attached to them. In other words, it would look like everything was pressed together when it might not be. So he said he wanted try to remove it.
He said that the incision was the same for both the colostomy bag and the possible tumor removal except that the possible removal involved a slightly larger incision. He said the recovery time was also about the same. He said he would not perform a laparotomy because he wanted to get his hands in and look at what was in there.
I was in the hospital, Day 2, and confronted with this information. I had not eaten any solid food and barely any non-solid food since Monday. I was around 100 pounds. I was overwhelmed.
Then the nurses associated with colostomy care came in and showed me what I would likely be getting. They were great – very caring and informative. I got more blood tests.
I had not prepared for open surgery. My townhouse has 28 steps inside and my bed is about 3 feet high. I am moving in 6 weeks and need to pack. I did not know I would be having an open surgery. I was not planning to be in the hospital past Sunday (today) and was now told they did not know when I would be discharged. I called the surgeon back and asked him if he could do a laparotomy. He said “no” even if the surgery involved just putting in the colostomy bag.
The surgeon said the best course of action was to try to remove the tumor and my oncologist agreed. Bear in mind that I was admitted to remove the stool blockage and get a colostomy bag.
So the plan was now to have open surgery, put in a colostomy bag, and try to remove the tumor.
I was in a panic. I placed an order from Amazon for an inexpensive twin mattress and bed frame with a lower profile to be delivered this week. I did an Internet search for a pet sitter to clean my cat’s litter due to the lengthier hospital stay and got lucky and found a lovely young girl. I called a man who lives close by and asked if he would help me get up the stairs after I was discharged. He was very concerned and said yes. It was one of the worst nights of my life. I also said good bye to my torso.
By that time, it was around 9:00 pm. At 10:00 to 11:00 pm, one of the nicest nurses in the world gave me two enemas. I was a wreck. She was very kind to me.
I barely slept.
The surgery happened at 8:30 a.m. on Saturday. When I was in the pre-operative room, the resident who is working under the surgeon was present. I asked him why I was not being given a laparotomy. He said that the camera used in that procedure would not give them more information than the CT scan and the surgeon wanted to be able to get his hands in and look.
When I was in recovery, I asked the anesthesiologist if the surgeon had been able to remove the tumor. He said yes. I repeated the question to confirm and he again said yet. The next few hours were my happiest.
When I got out of recovery hours later, I spoke to my mother on the telephone. The doctor had called her and told her that the tumor was attached just as the scans showed and could not be removed. She was beside herself.
Then the surgeon came into my room and told me. He also told me that I had stool blocking my colon that they removed in the lower part. I asked him about the upper part – the reason I was admitted in the first place. He said they could not remove any of that. He also said that I should start chemo the next day and would speak with my medical oncologist (the team leader). I said no. The medical oncologist had said I’d start chemo in three weeks after the surgery. I said I had to recover before I started chemo.
I was given blood tests and hooked up to a heart and other monitors yesterday – I was just a tangle of tubes and machines being given pain medication intravenously. It was a nightmare.
The nurses who are helping me, with just a few exceptions, are overwhelming kind and patient and helpful. They are the reason I am getting through this nightmare.
Today I woke up and wished I had made a different choice and gone with the first surgeon and his team even though I didn’t like the oncologist or just taken the surgeon with a different oncologist (if that is even possible). I would have had an outpatient procedure and been home strong and living my life. My stool blockage would have been cleaned out.
I would not be stuck in the hospital with no firm discharge date (and they have mentioned rehab and a visiting nurse). I would not have been sliced and diced. I tried to eat an egg salad sandwich and small garden salad for lunch and could make it only half way through due to pain. Is that the surgery or the stool blockage?
Today, all the doctors visited me and I asked about the stool blockage. They said that they expect the stool softeners they are giving me to be effective and the blockage should empty into the colostomy bag. I do not feel confident. How will anyone know if that is working unless I do another MRI – but I appeared to have a violent allergic reaction to the MRI injection substance.
We cannot turn back time. I must heal as quickly as I possibly can and get the hell out of here. The surgeon told me to eat regularly, sit in a chair the first night and walk the first night. I did it. I ate dinner in a chair and the nurse walked me down the hall once. Today, I had breakfast in a chair and sat there for an hour (not comfortable especially with the horrible catheter which is now gone) and my nurse walked by my side as we went around the whole floor twice with baby steps. I walked around the whole floor on my own once. My nurse said I’m a star because no one does that so quickly. I’ll do anything to get strong again – like I was 48 hours ago.
The girl handling my cat’s litter situation showed up on time and did the job well. Thank god.
And on top of this, my blood pressure is steadily dropping today. I’m now about 96 over 54. They’re not worried yet but I am. I want to go home.
So there you have it.