It’s pretty hard to sleep in a hospital bed at night as there are folks coming in to take your vitals every few hours, check your IV, take blood, empty your catheter, drain the stoma, drain the drain tube blood along with the noise and lights of the ward. So I did get some sleep but not as much as I should have but that’s the way it goes. I think that risk is pretty high the day after surgery so they want to keep a close eye on you.
I had a lot of chest congestion from 7:00 to 7:30 AM and I attribute that to the irritation from the chest tube. One of the nurses suggested using a cough pillow and that worked out when it was within reach. When it wasn’t, I had to clutch. Coughing was big pain but for a very short time. This took a few days to resolve though my voice was still weaker than usual at discharge.
TMI bucket: You can pass gas from the anus. I thought that it was shut off but it isn’t so stuff can come out there like mucus. They provide mesh underwear and put in pads to catch stuff.
I ordered breakfast but bland stuff was recommended so I ordered white toast, broth, and cranberry juice. It took me about five hours to eat because my body didn’t feel like eating even though my mind was very hungry. It was a little painful to sit and eat.
The major pain was on the left side and I tried to figure out if it was the wound, just general pain or related to the catheter. The catheter bag filled up fast because of the amount of fluids that they were pumping through me. The stoma bag filled up fast as well.
I did get up and walk three times. One round of 1 trip around the ward, one round of 2 trips around and one round of 3 trips around. The anesthesia wore off today so pain was unmasked. The left-side pain comes and goes and maybe urinating relieves it. They want me to crank up the fluids as they removed the ureter stents and the bladder has to wake up. I think that they were worried about infection if I didn’t get more through the bladder. In normal GI operation the body reabsorbs water from the large intestine but this is bypassed with my setup. So I could get dehydrated without enough water. An indication of enough water would be urinating and less in the bag.
One of the Surgeon’s doctors said that I will have to inject Lovenex into my thigh for the next month. I am scared of needles and close my eyes when I am stuck. I asked my wife if she would do it and she volunteered to do so. But I don’t know who will do it. I kind of pushed the unpleasant idea out of my mind.
The surgeon came and told me that things went well and that I might be down-staged depending on the path reports. I don’t know if the post-surgical treatment will be any different.
I had a long training session with the Stoma Nurse and she went through the making of a pattern, cutting the piece that attaches to the skin, applying the adhesive and putting them on. She went over suppliers as well. They will leave me with 10 bags and a tube of adhesive so I need to order more when I get home. Theoretically, it should be five bags per month but they give you ten of them per month. I’d rather be safe than sorry. I will order some on my own (without insurance) if I have to.
My friend George came down to visit. I wasn’t expecting him and I was a bit surprised that he took the time and expense to come down here. He only stayed for a little while. I would guess that he was scoping out the trip. He thought that I was doing quite well.
I tried Tylenol 650 mg. I couldn’t tell whether or not it helped. Dinner was toast and chicken soup. So about 400 calories for the day. My body wasn’t hungry but my mind was. This hospital has a fantastic menu and choosing from all of the options was challenging. I sent my wife the menu and she said “you have got to be kidding” - it had so many options. My roommate was impressed with the food and he’s a retired doctor.
I managed to empty my stoma bag but I forgot to squeeze out the gas.
I slept more soundly at night because I was tired from all of the activities on Tuesday. I emptied fluids (urine, bag) and had decent pain standing or moving. I took two Tylenol and Oxy 2.5 in the afternoon and 5.0 in the evening. The Oxy made my head feel a little funny and made me sleepy but it took about 50% of the pain off. I couldn’t tell whether or not it was worth it. But I tried very little and then a lot for pain meds and I was undecided.
The doctors came early this morning on rounds and removed the wound seal. There were staples underneath but I didn’t find out about those until I looked later in the day. There was one large horizontal wound in the middle and one small one on the left and two small on the right. I assume that these were for tubes to go in. I didn’t see the two on the right because they are obscured.
The goal for me was three rounds of walks but one of the nurses joked that they should put in eight boxes for walking so I walked the eight and made the boxes myself. The doctors and nurses were also concerned with my urine output. I thought that I was drinking a lot of water but most of it was going into the bag. So they added fiber packets and I ordered more fiber from food. Things only improved a little.
I called the insurance company covering my short-term disability and they confirmed that they got my information from my surgeon. So that’s one less worry to deal with.
I got the injection training and practice on a roll of tape.
Breakfast was a scrambled egg, applesauce and toast and it took me about five hours to finish it with all of the interruptions and with me not really feeling like eating a lot. I added two packets of salt to the food as Had leg and arm cramps last night.
The surgeon came to visit mid-afternoon and asked how I was doing. She thought that I could go home Thursday instead of Friday but I said that it would make my logistics difficult.
My urine output is still too low for the day. I tried to crank it up later in the day and wound up with water going into the wrong pathway and had a coughing fit which was very painful.
The left hip pain seems independent of the pain medication but I still took a Tylenol as I was debating ramping up medication for one last try.
Urine output has improved to 250-300 per shot but it’s still blood-tinged and I asked a nurse for a scale and she went to fetch one. They had this huge electronic scale that looked like it cost $2,000 and I weighed about seven pounds less than a week ago and that seemed reasonable to me.
I went to the visitor’s lobby and tried out a number of exercises. I wanted to do a few more but didn’t have the opportunity. I did a squat, crane pose, warrior pose, Neck rolls, Arm circles, Upper Body Twists, Rotator cuff stretches and Tree pose.
The doctors came in for rounds early in the morning (6 AM) and said that I should take Imodium and I was given three or four for the day. The bag material became much less watery and urine output increased. I’m still doing about 275 ml at a time. I think that my body wants me to go at a certain pressure level. Their target is 500-1500 ml in the bag and I was at 1800.
I took a lot of walks today, many to refill my pitcher. It may be that the overall amount of pain is decreasing with whatever is getting pressed healing.
I ordered a big breakfast to experiment: oatmeal, cream of rice, whole wheat toast, scrambled tofu. It was all good and filling. Dietary recommendations are to eat a bunch of small meals. This makes sense given the limited size of the bag.
Someone came in and told me that they were thinking of discharging me today but I said that I didn’t think that I was ready and my ride was scheduled for tomorrow so I didn’t hear anything more on discharge today. I also talked to someone about the discharge time and process and then sent email to my ride to schedule pickup at 12:30 PM on Friday.
The nurse came in for another teaching session on giving myself shots of Lovenex. I applied the alcohol to my leg but I was supposed to apply it to the roll of tape. So she asked me if I wanted to just inject myself or still test on the tape. I decided to just inject myself with her coaching and did it and it burned for about ten minutes and I could still feel it 30 minutes later. But it was done.
I had a look around work and considered starting a small project but decided against it. Things were relatively quiet and I spent time resting and doing some social media.
I ordered glazed salmon, macaroni and cheese and sweet potato for dinner and a chocolate chip cookie for dessert. I had the first three and saved the cookie for Friday. I have had no problems with any of the foods that I’ve tried. Several more walks, pitchers of water and I skipped pain meds for the rest of the evening. Then I wrote up these logs.
I feel like I’m ready to go home tomorrow.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx