Mikenh and Surgery

The CT scan found nothing but indicated that I'm in quite good shape. I had a look at my exercise chart vs the CEA chart and need to put them on the same chart. There very well may be a correlation as my walking increased by 300% in June and increased somewhat in May. I need to look more closely over the past seven months at the charts.

Cindy225 said:

Exercise and CEA Charts

Wow Mike that is a potential interesting correlation! My CEA at diagnosis was 2.8 during chemo 1.4 and after chemo has been rising slightly; 1.9, 2.0, 2.3, 2.4.  My Oncologist's response has been "Normal is Normal".  I have a visit next week and will ask about this.  I have been working out pretty aggressively...  Good luck with your reversal surgery at the end of July. FYI My "team" told me it was the victory lap so I was excited and a bit under prepared emotionally for the reality that it is still surgery and requires time to recover and working through the new normal...

Cindy 

I know the feeling of anxiety. I could have scheduled it for the middle of July because my surgeon had openings but I have some things to take care of before then. One of them is to replace the upstairs toilet (I have been using the downstairs toilet as it works better and is more efficient but I fell down the stairs twice using it at night). So I pushed it out until the end of july to have time to process what I need to do and have enough time to do it in. I find that mental preparation is needed for everything medical-related. To getting stuck for a blood test to meetings to big stuff like chemo, radiation and surgery.

But, if we made it this far, it isn't really that much farther to go.

Victory lap? Kind of like the person dragging themselves at the entrance to the stadiuma and staggering towards the finish line. I actually feel quite beaten down by the past year.

Mikenh said:

It was 2.8 at diagnosis and

It was 2.8 at diagnosis and went down to 1.8 on Chemo and Radiation. Then down to below 1 after surgery but it was a different lab. Then 1.8 to a high of 4.5 over the Adjuvant chemo. I finished chemo three weeks ago which is not a long time. Someone else had the same thing and it started going down a few months after finishing chemo. My fitness center manager wondered if it was due to my walking as there may be inflammation that I don't see in my body related to my workouts. She said that 100 miles per week is pretty stressful on the body even though it doesn't feel like it.

My oncologist didn't want CEA done at all during chemo, because it makes the numbers fluctuate.  After my liver surgery, my CEA took several weeks before it went down into a normal range. 

Its early days.  Good luck with your reversa. Focus on that, and recovery, and leave the CEA worries until later. 

Tru

Today was difficult because I 1) Ate late, 2) Ate beans, 3) didn't wake up to empty the bag. So it got inflated and I let out the gas a few times overnight. And this morning, I basically got an idea of what the reversal will feel like. It was a lot of time on the toilet and a lot of very quick urgency. So back to the pads for a day or two while my large intestine settles down. I'm not eating anywhere near bedtime tonight and will schedule two wakeups to empty the bag.

There was some blood too but I think that's due to irritation in the large intestine from having to work after being rested for so long. I was also apprehensive about going out but I did go out and things quieted down. Not 100% but enough so that I can go through a normal routine. I used one of my daughter's heavy pads (lots of coverage) and that took care of my bigger worries this afternoon and this evening. She told me that she bought them from Costco and that we have a lot of them. Apparently she didn't really like them.

It was not a fun day - we had other plans which we had to scuttle. But the preview was good to have; even though it felt awful.

darcher said:

Get ready

 Although I didn't have a bag of any kind I can relate to the world revolving around our butts.  From time to travel, proximity to bathrooms, and diet it creates a crapstorm environment that if slipped up on will result in humiliation beyond compare.   I thought having my privates exposed to a group of strange women was bad.  Then again, I guess porn stars have to get used to it so it must be doable.  But losing poop in front of others?  That is without a doubt the worst.  Came really close a couple times even though it was with relatives who are aware of my condition it's still terrible to imagine.  Thank God for depends.  

I don't know what it's going to be like trying to use body parts sidelined for a few months but I'm sure it won't be a walk in the park.   I'm in Indonesia at the moment and it's been a little rough.  I was beginning to feel better which is why I went but now I'm regretting it.  The food is "different" a long with half the toilets.  There are lots of places that still have what I call squat pots.  Oh, and no toilet paper.  Its water only.  In a tub with a little ladle.  I've become familiar and an expert in determining which places are likely to have or where to look for modern facilities.  Roadside gas stations are the worst.  It's all squat pots and they're not clean plus they have the nerve to charge for using them.  Newer large  malls built after 1990 will usually have modern toilets.  Not to say there won't be some guy sitting there with a hand written number on a box wanting to extort for a crisis resolution.  

Is it the shorter intestine, or the chemo. My intestine was repaired in two spots. And I find that when I have to go, I HAVE to go very soon. And like for a cpuple more times right after. I ust finished chemo, so am not sure which is the cause. Chemo definitely messes up my bowel movements.

Mikenh said:

Surgery is on Monday with

Surgery is on Monday with reversal and port removal. There's anticipation and anxiety and I won't like being out of commission for a while. But it would be nice to get rid of the attached hardware. I'd guess that they'll do a CEA and I hope that's at least stable.

I'm also dealing with just learning that my sister has something that might be as bad or maybe a little worse than cancer and I will need to go and talk with her after recovery.

Good luck! I can't wait to get my port out! My oncologist said if my post chemo scan(in two weeks) is clean, I can get mine removed.

on your reversal and port removal.  Wishing your sister improved condition on whatever she's dealing with.

Mikenh said:

My surgery was scheduled for

My surgery was scheduled for 7:30 AM and I think that's when it started. I woke up in the recovery room around 1 PM and was quite groggy for half an hour. One of the anesthesia guys came in later on to check on me and I think that the consensus was that the dose was too high as I should have been awake a lot earlier.

Brigham and Women's Hospital was full yesterday and it's full right now so I'm still in the recovery room waiting for a hospital room.

I walked about five miles last night. There was no pain outside of getting poked here and there.

They had me on IV tylenol and there was a long-lasting local at the wound site.

They just changed the packing on the wound. I had heard of packing but I thought that it was just stuff on the outside. The packing is pushed on into the wound with a small stick. I thinkt that the doctor pulled out about two feet of the stuff on the first change.

The doctor offered a discharge this evening but my ride is tomorrow morning. The wound site is a little messy.

I had some bowel adventures with urgency and not knowing whether or not there was something there or just gas. I probaby spent well over an hour in the bathroom and had one messy incident and almost a second. I brought a pad and that helped a lot but the hospital bathroom has pads (small and large), mesh underwear and a package of wipes. So I was able to keep things fairly neat and tidy. A nurse ordered a light breakfast for me and I'd guess that will be an adventure too.

I was at Costco Sunday and they had dog mats. They are essentially the same as Chux. I would have bought them but they came in boxes of 100. I may buy a box anyways. It would be nice if I could find a box of ten to try out. My daughter suggested going to a pet store.

Mike:

So glad to hear some good news.  Improvement will occur quickly, but not fast enough, at least that was my situation.  I did not have to do the wound packing regimen, thank goodness, but my bowels did not move for at least 48 hours so I was confined to the hospital while we all waited.  I was reversed midday Monday and discharged early Friday morning. 

I was so motivated to leave that I refused the traditional (and mandatory) wheel chair ride to the front door.  I grabbed my small bag and did the left-right, left-right to the closest exit.  Hospital stays have a way of motivating departures!

Now you have more adjustment to your newest new normal.  Regardless, I know that you are glad to have it over.

Jim

Mikenh said:

My surgery was scheduled for

My surgery was scheduled for 7:30 AM and I think that's when it started. I woke up in the recovery room around 1 PM and was quite groggy for half an hour. One of the anesthesia guys came in later on to check on me and I think that the consensus was that the dose was too high as I should have been awake a lot earlier.

Brigham and Women's Hospital was full yesterday and it's full right now so I'm still in the recovery room waiting for a hospital room.

I walked about five miles last night. There was no pain outside of getting poked here and there.

They had me on IV tylenol and there was a long-lasting local at the wound site.

They just changed the packing on the wound. I had heard of packing but I thought that it was just stuff on the outside. The packing is pushed on into the wound with a small stick. I thinkt that the doctor pulled out about two feet of the stuff on the first change.

The doctor offered a discharge this evening but my ride is tomorrow morning. The wound site is a little messy.

I had some bowel adventures with urgency and not knowing whether or not there was something there or just gas. I probaby spent well over an hour in the bathroom and had one messy incident and almost a second. I brought a pad and that helped a lot but the hospital bathroom has pads (small and large), mesh underwear and a package of wipes. So I was able to keep things fairly neat and tidy. A nurse ordered a light breakfast for me and I'd guess that will be an adventure too.

I was at Costco Sunday and they had dog mats. They are essentially the same as Chux. I would have bought them but they came in boxes of 100. I may buy a box anyways. It would be nice if I could find a box of ten to try out. My daughter suggested going to a pet store.

Mike,   I buy  the puppy training pads in packs of twenty at the grocery store in the pet food/pet supply section. I know Publix has them, and WalMart probably does, too. I hope your bowel issues get sorted and  that  you are on the mend at home now.

Grace/lizard44

These are the notes that I wrote for Wednesday. Things did get a lot harder for a day and I was wondering if I was going to have urgency issues for a while.

The other side.

They gave me too high a dosage on the anesthetic so I woke up around 1 PM. The surgery started at 7:30 AM and should have taken 90 minutes. I was quite out of it and it took a while to get to normal.

They are out of beds at the hospital so I’m in recovery until they find one. I’ve walked 1.5 miles so far so I’m not a wreck physically. There’s no place nearby to do yoga.

——————

Total of four miles after surgery. Some gas came out afterwards and some watery stools. I put on shorts with a pad to keep things from getting messy. I’m getting heparin shots every 8 hour’s.
So far one in the knee and one in the stomach.

The port remainders looks awful. But I don’t feel anything.

——————

The bowel stuff is pretty tough. A lot of messy cleaning and the skin gets raw. I went through two underwear and one pair of shorts and asked for mesh and they gave me a pair and I hope it works. The pads are lifesavers.

I need to pick up Chux, pads and wipes. It’s like having babies.

Everyone tells me that things will get better in two to six weeks. It will be quite the challenge. I’ve seen lots of others go through it though.

——————-

They put me in a private room at the Shapiro Pavillion as they probably didn't want me to spend my whole stay in the recovery room. It was a lot quieter and private so I could get some rest and figure out how to deal with the bowel stuff. It was quite tiring cleaning up and it reminded me of neo-adjuvant chemo/radiation.

This morning I woke up at 4 AM and went to change and clean everything and it went smoothly. So it takes several times going through the process and you get better at it with time. What helps a lot is to have a bunch of pads and wipes in the bathroom within reach. Also, take the mesh underwear - they come in packages of two here. I came with two underwear and two shorts and got stuff on the two underwear and one of the shorts while changing the pad. I didn't want to soil the other shorts as I plan to wear them on the long drive home so I asked for mesh shorts and they gave me a package.

So you make mistakes managing the bowels and you learn but you need enough in supplies to get through the times when things don't go perfectly - and it happens a lot; at least it did for me.

I plan to take a Chux with me to put on the car seat on the way home. I'm also going to skip breakfast to decrease the potential of output. I'm going to have to figure out driving, going to the office, working, etc. I've had lots of folks describe it but it feels real once you go through it.

I ordered a higher-fiber dinner last night (Quinoa with chicken, peas, cashews, diced tomatoes, asparagus) to try to firm things a bit and .... nothing. One of the surgeons said that the doctor will suggest fiber supplements a week or two after surgery if things are still loose - but that stuff is only if things don't firm up on their own.

I have walked about 14 miles since surgery and 12 of that was without pain but that's because I was on painkillers. I declined them for a while and then had a little pain around the wound area. So I've been taking it easier this last day.

I think that things would have been overall more challenging if I had been discharged last night as it took me last night and this morning to get the pads and cleaning stuff to a decent state. The large bathroom and availability of supplies was a very big help.

I also tried to keep things clean so that the nurses didn't have to clean up the bed or clean me up. I worked in a hospital long ago and did see the nurses doing a lot of work cleaning patients up - and it meant cleaning the bed, maybe the floor or bathroom and the patient. Definitely not easy work. I don't like the idea that I have to be cared for or need help but that is somewhat unrealistic with cancer.

———————

I changed the pad after getting home and just used toilet paper instead of the wipes. I have a 12x12x12 box full of folded toilet paper of one sheet by two sheets containing from four to six layers. I used these to wipe the bag after emptying it. It was nice having a stack of these available instead of trying to get a piece off a roll while the other hand was holding the bag open. Those folded bundles are useful for cleaning up.

I went to the office and went to the bathroom and saw a little. Then went to see my manager. She was quite surprised to see me and wondered why I hadn't sent anything today. We discussed a couple of things and I went to the shipping room to pick up a few things. The lady in the shipping room knew that I had surgery and was kind as she helped me carry some of the packages to my car. She's had a few medical difficulties over the years and we chat about them from time to time. I went to the bathroom three times and it felt like the stool was firming up. I also saw a ver small amount of blood on the toilet paper.

I went home and had toast and eggs (I hadn't eaten for 21 hours to avoid output on the drive home) and was quite hungry. I wanted to go to pick up Tylenol, pads, underwear (incontinence), an ankle brace (my wife had an ankle strain while I was gone), cloth tape (the tape the hospital gave me should have been 3 inches instead of 2) and gauze (they gave me 4x10 when it should have been 4x3). Instead I fell asleep for four hours. I had left the Chux in the car seat so I grabbed a trash bag, put that on the bed and slept on it. I woke up and went to the drug store and picked up the Tylenol and men's underwear for incontinence. I picked up this huge package of them because it was in front of me and was going to take it to the register but then I thought that I might not need this many.

The drug store didn't have 3 inch cloth tape nor did they have 4x3 gauze so I will cut the larger pieces to size and use maybe two layers of cloth tape overlapping an inch. They did not have exactly what I wanted for ankle braces but I did find the Tylenol (most of the packages were 500 mg and the doctor indicated 325 mg).

I got home and opened the package from the doctor with the discharge instructions. The nurse went over them with me but I went through them again. I have a prescription for Oxy - 10 pills. She gave me a prescription because doctors can't phone opioid prescriptions any more. There may be some limitations over state lines too as most states tightly control opioid prescriptions now. I don't see a need for the Oxy at this point as Tylenol has worked. The nurse pushed me to take three for the trip. I didn't take any last time but will take it this time as there are aches around the wound when I do certain things.

The weakness is when I get into a car (getting out isn't a problem), getting out of bed (no rails) and some random movements. I suspect that I could sleep a lot.

The instructions suggested a lot of protein as this will help the wound seal.

I'm feeling a lot more comfortable at home but I'm going to have to tone down my expectations on energy levels as I've been too optimistic there.

I passed by Planet Fitness on the way to the drug store and the thought of going there and walking for an hour flashed by.

———————

The incontinence underwear is great. The pads are good too but you have to get the adhesive right and they can move around because the adhesive is just a little strip.

One other odd thing that I noticed is that my neuropathy in the toes goes away when I take the Tylenol and then comes back when it wears off.