Cancer Journal - Sunday August 18th - Reflections Post Surgery
I
came home from the hospital this morning. Surgery was successful with only a
couple minor surprises. They found that the tumor was closer to the rectum than
expected so the surgeon had to take some of the rectum as part of the resection.
The good news is that there was still enough margin that it doesn’t interfere
with the performance of the rectum (so, No colostomy, thank goodness). The
other surprise was a couple of growths on the diaphragm which they removed and
biopsied and found to be benign.
Surgery, as they always are, was surreal. We arrived at 5:30am and checked in. The kids were allowed to come back into the pre-op area until I was wheeled into the OR. The anesthesiologist was especially good talking to the kids while I was answering questions. He was reassuring them and telling them what would happen. Dustin arrived around 6:30 or so and stayed with us until it was time to wheel me in. I got to say good bye and I love you to everyone. We didn’t pray before going in but I said to Dustin, “Your presence was my prayer.” I have been extra intentional about saying “I love you” especially to the kids lately. There was always the possibility that the uncommon could go wrong.
After I was wheeled into the OR, I laid there as all the prep was going on around me. They put an oxygen mask on my face as the anesthesiologists set up their tools. I looked up at the bright OR lights and I wondered if it freaks out the anesthesiologists to have a patient staring up at them. After a couple minutes, the head anesthesiologist said, “You’re going to feel a little burn” as the first medicines pushed into my IV. If I ever felt that, I don’t remember it. I have a vague memory of waking up in my room and trying to read the cards that the kids made for me. I struggled because I was still so sleepy. I don’t remember waking up in the recovery room but, apparently, I had been awake for a while because I found out later that Georgia fed me some jello.
After Christine and the kids left, I fell into a VERY deep sleep. When I woke up, my nurses were coming in to announce the shift change. I saw the clock said 7:30 and I looked out at the dim light outside and thought it was Friday morning. So, when my nurse said, “I’ll be your nurse tonight,” I thought “Should I correct her about being my nurse for the day. When I did say something, she clarified that it was 7:30 PM and now I thought it was Friday night. I finally realized that, despite the really deep sleep I had just experienced, I had only slept for an hour and a half.
That night, I went for a walk with Kim, the physical therapist who helped me do a lap around the hallways. I had a great nurse named Nicole. I asked her a question about the Dilaudid pump, concerns about not staying on top of my pain versus over using it. She was very thoughtful and engaging about how to approach a decision to press the button. Overall, she was just over the top. In the morning, she made a point of coming in to my room and moving my bed to watch the sun rise. In the middle of the night, I was woken at 3:30am by a phlebotomist who was supposed to draw blood. I was testy with her about being woken up at 3:30am partly because I had finally fallen into a good sleep. She was very non-reactive and explained that the doctors wanted the lab results when they did their rounds at 6am.
Friday was a pretty good day. The doctors came by and shared the results of the surgery. They were glad to hear that I had walked the night before and my doctor was receptive to my request to remove the Foley catheter. (That was about as horrible an experience as I expected). When I first tried to urinate without it, it burned and I had a hard time urinating. The nurse was required to stay in the room with me even though I was sitting down because I was a fall risk. And possibly because she is a female, she insisted on talking to me while I tried to urinate. That didn’t help at all. Eventually, I succeeded and the rest of the day I progressed with urinating. Christine and the kids came to visit and I went for some more walks, made more difficult by all the IVs and monitoring devices attached to me. By the end of the day, I was exhausted but my nurses accepted my request to remove the 2nd IV that was in my other arm.
Friday night was a challenge. I realized that I was urinating every hour in part because the IV pump was pushing fluid into me constantly. I had not used the Dilaudid pump very often and I requested to have the IV disconnected so I could sleep through the night as much as possible. The nurse, Kate, was understanding of my plight but told me that the doctors wanted me to drink a liter of water before they discontinued the IV. When I pointed out to her that I had drank three full cups of water (not knowing that each cup was 650 ml), she then said that she might be able to get the doctors to reduce the IV to 10 (from 50). (I don’t know what those numbers mean.) I asked her at what point do I have the right to refuse treatment because I would like to be able to sleep tonight. She said, “I’ll tell your doctors that you are refusing the IV.”
I was depressed and angry about the situation which seemed to not be helping my pain at all. Eventually, the charge nurse came in and said that she was going to turn down the IV as low as it would go, 5, so that I could still get the Dilaudid. And if the doctors didn’t like that decision, she would tell them that I was refusing any more than that. That felt like a reasonable compromise. Kate had made the reasonable observation that part of all the urinating was from my body flushing out the large quantity of fluids that they pump into you during surgery. And she was right. Despite the IV being turned down to 5, I still woke up frequently to urinate. Not as much as I had during the day but frequently.
Saturday went much better. I made peace with Kate in the morning during shift change. The doctors told me that if I got completely off of the Dilaudid pump and met some other goals (passing gas and a bowel movement), I could be discharged. My day nurse, Emily, disconnected me entirely from the IV (although the port was left in just in case I needed to be reconnected). And even my pulse ox monitor was removed so I was completely liberated from devices and I was able to take a shower. In the middle of the night, I began passing gas and by late afternoon, I had a small bowel movement. It was very small because all I had to eat up to that point was chicken noodle soup and ice cream for lunch on Friday and Saturday. I celebrated by ordering grilled salmon and French fries for dinner.
Sunday morning, I had slept through most of the night with very few disruptions. I got up to go to the bathroom a couple times, the nurse came in to check my vitals. I hardly saw my night nurse, Katie, but that was ok because I was doing well. IN the morning, the doctors came in and examined my surgical wounds and asked if I wanted to discharge today or tomorrow. I told them it wasn’t an easy choice because of all the added support here, the handle bars on the bathrooms and the nurses, but ultimately, I would rather try to start recovering at home. So, I was discharged at 11am this morning. My day nurse, Jessica, was very helpful getting my stuff downstairs to the car when Christine and the kids showed up.
I am managing my pain with Tylenol primarily. I have some Tramadol as a back up if the pain gets to be too much. Mostly, I would describe my pain as severe discomfort. I can’t get up off the couch easily and I walk very slowly because the surgeons cut through my abdominal muscles so everything is tender there. So far, I haven’t used anything but Tylenol since I last used the Dilaudid pump yesterday at 5am.
I have more recovery in front of me. I get tired very easily and I don’t want to underestimate the discomfort I am feeling. It is limiting. I can’t get up easily and the thought of getting up for any reason comes with thoughts of “Is that worth it and what else can I do to make this more efficient.” I have to sleep on my back and mucus drops into my lungs and is not easily cleared out because it is hard to cough. Rolling off of my back and standing up from bed is painful because, at some point, I have to use my abdominal muscles to pull myself upright to the edge of the bed. In the hospital, I had several handholds to help me make this transition and, even then, it was difficult. But I am hopeful that this will become easier each day. It is just going to be a long week. By the end of the week, I should hear about whether or not there was any cancer cells in the lymph nodes. Obviously, my hope is that the answer will be No and no further treatment will be necessary.
Surgery, as they always are, was surreal. We arrived at 5:30am and checked in. The kids were allowed to come back into the pre-op area until I was wheeled into the OR. The anesthesiologist was especially good talking to the kids while I was answering questions. He was reassuring them and telling them what would happen. Dustin arrived around 6:30 or so and stayed with us until it was time to wheel me in. I got to say good bye and I love you to everyone. We didn’t pray before going in but I said to Dustin, “Your presence was my prayer.” I have been extra intentional about saying “I love you” especially to the kids lately. There was always the possibility that the uncommon could go wrong.
After I was wheeled into the OR, I laid there as all the prep was going on around me. They put an oxygen mask on my face as the anesthesiologists set up their tools. I looked up at the bright OR lights and I wondered if it freaks out the anesthesiologists to have a patient staring up at them. After a couple minutes, the head anesthesiologist said, “You’re going to feel a little burn” as the first medicines pushed into my IV. If I ever felt that, I don’t remember it. I have a vague memory of waking up in my room and trying to read the cards that the kids made for me. I struggled because I was still so sleepy. I don’t remember waking up in the recovery room but, apparently, I had been awake for a while because I found out later that Georgia fed me some jello.
After Christine and the kids left, I fell into a VERY deep sleep. When I woke up, my nurses were coming in to announce the shift change. I saw the clock said 7:30 and I looked out at the dim light outside and thought it was Friday morning. So, when my nurse said, “I’ll be your nurse tonight,” I thought “Should I correct her about being my nurse for the day. When I did say something, she clarified that it was 7:30 PM and now I thought it was Friday night. I finally realized that, despite the really deep sleep I had just experienced, I had only slept for an hour and a half.
That night, I went for a walk with Kim, the physical therapist who helped me do a lap around the hallways. I had a great nurse named Nicole. I asked her a question about the Dilaudid pump, concerns about not staying on top of my pain versus over using it. She was very thoughtful and engaging about how to approach a decision to press the button. Overall, she was just over the top. In the morning, she made a point of coming in to my room and moving my bed to watch the sun rise. In the middle of the night, I was woken at 3:30am by a phlebotomist who was supposed to draw blood. I was testy with her about being woken up at 3:30am partly because I had finally fallen into a good sleep. She was very non-reactive and explained that the doctors wanted the lab results when they did their rounds at 6am.
Friday was a pretty good day. The doctors came by and shared the results of the surgery. They were glad to hear that I had walked the night before and my doctor was receptive to my request to remove the Foley catheter. (That was about as horrible an experience as I expected). When I first tried to urinate without it, it burned and I had a hard time urinating. The nurse was required to stay in the room with me even though I was sitting down because I was a fall risk. And possibly because she is a female, she insisted on talking to me while I tried to urinate. That didn’t help at all. Eventually, I succeeded and the rest of the day I progressed with urinating. Christine and the kids came to visit and I went for some more walks, made more difficult by all the IVs and monitoring devices attached to me. By the end of the day, I was exhausted but my nurses accepted my request to remove the 2nd IV that was in my other arm.
Friday night was a challenge. I realized that I was urinating every hour in part because the IV pump was pushing fluid into me constantly. I had not used the Dilaudid pump very often and I requested to have the IV disconnected so I could sleep through the night as much as possible. The nurse, Kate, was understanding of my plight but told me that the doctors wanted me to drink a liter of water before they discontinued the IV. When I pointed out to her that I had drank three full cups of water (not knowing that each cup was 650 ml), she then said that she might be able to get the doctors to reduce the IV to 10 (from 50). (I don’t know what those numbers mean.) I asked her at what point do I have the right to refuse treatment because I would like to be able to sleep tonight. She said, “I’ll tell your doctors that you are refusing the IV.”
I was depressed and angry about the situation which seemed to not be helping my pain at all. Eventually, the charge nurse came in and said that she was going to turn down the IV as low as it would go, 5, so that I could still get the Dilaudid. And if the doctors didn’t like that decision, she would tell them that I was refusing any more than that. That felt like a reasonable compromise. Kate had made the reasonable observation that part of all the urinating was from my body flushing out the large quantity of fluids that they pump into you during surgery. And she was right. Despite the IV being turned down to 5, I still woke up frequently to urinate. Not as much as I had during the day but frequently.
Saturday went much better. I made peace with Kate in the morning during shift change. The doctors told me that if I got completely off of the Dilaudid pump and met some other goals (passing gas and a bowel movement), I could be discharged. My day nurse, Emily, disconnected me entirely from the IV (although the port was left in just in case I needed to be reconnected). And even my pulse ox monitor was removed so I was completely liberated from devices and I was able to take a shower. In the middle of the night, I began passing gas and by late afternoon, I had a small bowel movement. It was very small because all I had to eat up to that point was chicken noodle soup and ice cream for lunch on Friday and Saturday. I celebrated by ordering grilled salmon and French fries for dinner.
Sunday morning, I had slept through most of the night with very few disruptions. I got up to go to the bathroom a couple times, the nurse came in to check my vitals. I hardly saw my night nurse, Katie, but that was ok because I was doing well. IN the morning, the doctors came in and examined my surgical wounds and asked if I wanted to discharge today or tomorrow. I told them it wasn’t an easy choice because of all the added support here, the handle bars on the bathrooms and the nurses, but ultimately, I would rather try to start recovering at home. So, I was discharged at 11am this morning. My day nurse, Jessica, was very helpful getting my stuff downstairs to the car when Christine and the kids showed up.
I am managing my pain with Tylenol primarily. I have some Tramadol as a back up if the pain gets to be too much. Mostly, I would describe my pain as severe discomfort. I can’t get up off the couch easily and I walk very slowly because the surgeons cut through my abdominal muscles so everything is tender there. So far, I haven’t used anything but Tylenol since I last used the Dilaudid pump yesterday at 5am.
I have more recovery in front of me. I get tired very easily and I don’t want to underestimate the discomfort I am feeling. It is limiting. I can’t get up easily and the thought of getting up for any reason comes with thoughts of “Is that worth it and what else can I do to make this more efficient.” I have to sleep on my back and mucus drops into my lungs and is not easily cleared out because it is hard to cough. Rolling off of my back and standing up from bed is painful because, at some point, I have to use my abdominal muscles to pull myself upright to the edge of the bed. In the hospital, I had several handholds to help me make this transition and, even then, it was difficult. But I am hopeful that this will become easier each day. It is just going to be a long week. By the end of the week, I should hear about whether or not there was any cancer cells in the lymph nodes. Obviously, my hope is that the answer will be No and no further treatment will be necessary.
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