Today Butch installed my new add on bidet.
Holy hell! That thing will shoot you off the toilet at the lowest setting! I have to say, I was worried about the cold water would be a bit much, however it was refreshing even without butt burn! All set for coming home from the hospital next week!
As embarrassing as it is I also have adult diapers as well as pads and creams...
This is my reality.
There are a few studies that indicate that my recovery is going to be a doozie. I have no retention capacity. Well, I have 1 inch. Possibly two counting the tiny “end” past the attachment point. Uh, yeah, that’s nothing compared to the well designed 6” of rectum that is now missing. Add to this that the portion I need to “retain” as a rectum will have peristalsis going on. Something the rectum does not do. So active “pushing” will be going on at all times. So, if I’m lucky I’ll go less than 30 times a day and more like 5 times a day. Even that sounds excessive to me, but if it’s controlled, I will be OK with that.
The harsh reality is that the surgeons concentrate on removal of cancer, they are not concentrating on quality of life AFTER the surgery. They cut out the cancer with little discussion of what life can really be like after.
Part of the discussion on one of my reversal boards was around this lack of possible outcomes being supplied to their patients. That surgeons are shocked to find out after surgery when things do not miraculously resolve 6 weeks post op for a majority of individuals who have had all of their rectum removed. Shoot I wasn’t even given a choice on how I was reassembled. I may have been able to ask for a j-pouch for more retention power!
Another train of thought on that is that the only individuals you hear from are those with issues seeking out solutions, not those who have merrily gone on their way with happy outcomes. So maybe we only see the bad outcomes on the boards and not the good outcomes.
So, although I’m looking forward to the reversal and going more towards a “normal” I’m not looking forward to the unknown nor the possibility of a horrible outcome BUT I’m going to give this a solid 12 months to see results, find my food triggers (if I have any), find what works and what doesn’t. At 6 months if things aren’t going well, I’ll seek out a GI person to go for more invasive pelvic floor intervention and training. If, after 12 months I’m not better and miserable, then I will seriously consider going to a permanent colostomy. The bags doable and I haven’t had issues with the one I have now. The only major issue I had was initial adjustment to putting it on without making angry skin :) I’ve figured that out. I don’t consider the bleeding after surgery as MY issue in that it wasn’t something I did to cause that one and I handled it well and got it to heal without issue. So a bag isn’t the end of the world. At least not mine :) I can travel with a bag easy enough!
Sol not going into this blind and know there is going to be one hell of an adjustment period on this one!
Saturday, February 3, 2018
Wednesday, January 31, 2018
Well, hell.
I have started to get a sore throat. Yep a week from surgery and I’m coming down with a blasted cold.
I sent the Mayo team a message and told them I would keep them informed.
I took Zicam as soon as this started in hopes of heading it off. Took it for two and a half days as I don’t know if I can take it within a week of surgery... had to discontinue all other supplements so quit that one too - did ask if I could resume if it’s not harmful and they think it may help. Ugh!!!
Here’s hoping it doesn’t develop into a full blown cold after all!!!
Lizzie came home from Boston hacking and coughing. We have been diligently wiping everything with Clorox wipes.... I really can’t blame her as I started feeling this right as she came home... so I caught it at Mayo. Drat it!!
Hopefully this doesn’t delay me again!!
I sent the Mayo team a message and told them I would keep them informed.
I took Zicam as soon as this started in hopes of heading it off. Took it for two and a half days as I don’t know if I can take it within a week of surgery... had to discontinue all other supplements so quit that one too - did ask if I could resume if it’s not harmful and they think it may help. Ugh!!!
Here’s hoping it doesn’t develop into a full blown cold after all!!!
Lizzie came home from Boston hacking and coughing. We have been diligently wiping everything with Clorox wipes.... I really can’t blame her as I started feeling this right as she came home... so I caught it at Mayo. Drat it!!
Hopefully this doesn’t delay me again!!
Sunday, January 28, 2018
Bag decorating
Bag decorating to say “bye!!”
1st attempt I drew Audrey too large!
2nd attempt there is. Message to the docs!
1st attempt I drew Audrey too large!
2nd attempt there is. Message to the docs!
Friday, January 26, 2018
Mayo adventures
Tuesday:
7:00 leave house
11:45: first appointment MRQ very close to three hours dang near. A full hour on the table. :( I took an Aleve prior to ward off the back ache. Yeah. Didn’t work but it kept me to where I wasn’t in super pain till the last 15 minutes. I also got sick with the glycogen they shoot you up with. I think I didn’t react last time as I got it in the IV. When you get it in a port it’s straight into your system. Made me flush and nauseous. Yuckie. And you have to have it twice. Once before you go in and once about the 45 minutes mark. Barf!! I didn’t but there for a minute I thought I would. Good thing the feeling wears off in just a few minutes!!
2:50: CT I swear 5 minutes in the tube and GONE. Whoop!
And all this time I am fasting. No food before MRQ for four hours. I didn’t eat breakfast - not thinking. Nerves? Not hungry? Unknown!
THEN CT said nothing to eat two hours prior. Funny. I didn’t finish the MRI until just before the CT time. The funny thing is I had water - lots of water and was fine until about 2pm then started getting hungry. So on the way to the hotel I got a cheese burger happy meal and I was... well....happy :)
About 6:30 we headed out and got a proper dinner at Millers Ale House. I had their dinner special of 35 fried shrimp. Butch got steak. I had 15 shrimp 1/2 a potato and a few bites of steak from Butch. Urp. I was stuffed!!
Wednesday
8:30 and 8:40: fasting blood draw and urine sample. I had said I wasn’t going to use the port. I used the port. Ha!!
After blood I got to eat in the cafeteria for the FIRST time. Really. Since July I haven’t eaten at the Mayo. I watched Butch eat there while on Optifast. Yeah. That was fun. Today I got a made to order omelet - YUM!!! I got ham with spinach, black olive, and cheese. And it was delish!! Butch had one with bacon and something. I didn’t pay attention - I was off getting tea while they cooked both of ours. All in PLENTY of time for my next appointment!
10:00 - barium enema X-ray. Ok that way freaking COOL. Ok not the enema and me freaking out prior (babbling and telling them to be nice to me and my gut - ha!) however watching the fluoroscope in action was awesome!! I’m a medically curious person and should have stuck to the medical field in my youth! So that said I didn’t dribble all the way to the bathroom - bonus. I only (?) had I would consider slight lack of control. Yay! I’m seeing some hope in that. What scared me was a consistent narrow spot a few inches into the bowel and not near the surgical sight from what I could tell.... but I’m not a doctor so we shall wait to see what he says.
12:00 pre-admit basically paperwork. Simple Simon. Got it done then we took a ride.
We drive south quite a bit and saw some HUGE beautiful beach mansions!! Looked them up on Zillow after. There is this one that I love.
Bwahahaha
Or this one. (Not for sale currently)
It’s a little further south where my more acceptably priced house is.
You have to admit this one is CUTE!!!
Ok done drooling.
No one more!!
Because who doesn’t need a house with a Harry Potter size chess board outside. Right??
Also seen on the way back. An alien.
Oh disregard!!
And the perfect license plate on a Tesla
I even got a short nap as we dropped by the hotel. Zzzz. It was lovely!!
3:30. Dr Landmann, surgeon. Answers today. Open does not mean surgical cut it means they will go through the Stoma. He will then do a purse string leaving it open to continue to heal. Ok. Relieved!! I didn’t want a center cut - not sure why. Not like I’ll avoid a scar. There will be one where the Stoma was. Oh well.
Not a lot of questions other than how he would be closing it up. He’s confident I’ll be just grand as I could hold water fairly well. Me too honestly!!
It will take some time but I know this game me more hope for normalizing fairly quick. Then I messed myself (with a pad) on the way to the hotel later - hahaha. Oh won’t be perfect at first!
The downside to this appointment was he did a flex sigmoidoscopy. Basically a short flex colonoscopy only looking at the lower parts of the colon and you’re awake. So. Now Liz and Bitch have both seen my colon and the doc was nice enough to let me get up on my elbows and see the repair in the screen. Nice little round scar tissue where he joined me together. He was quite proud of his handiwork as I’m clenching my cheeks trying NOT to shoot that took across the room. Ha!!
I told Angela she is the only one not to witness my colon. She needs to see it next - hahahaha. Yeah, she said no. Ingrate. I was going to let her in the colon club.
My schedule for colonoscopies is one year, then three, then five after that for life. Ok. I can deal with that.
4:00 appointment with nurse at Colorectal Group. Going over preop stuff.
4:30 appointment with preop group to get EKG and go over orders for surgery date. All is well on the EKG. And we are DONE for the day. Whooo hooo!
Out by 5:00
Headed to the hotel to hang loose and relax a bit.
At about 6:30
We headed out to dinner. We chose Ted’s Bison House. I had the meatloaf with garlic mashed potatoes and squash casserole. I liked the meatloaf and potatoes but wouldn’t have the squash casserole again. Butch had a bison steak with asparagus and baked potato. He wasn’t impressed with the steak :(
The off to the hotel and settled in for the night. Zzzzz
Thursday.
Up LATE. Dragged bootie. I then took a LONG time getting ready as I did a bag (flange) change as well. Finally out the door at 11 ish. We got a car wash thanks to the berry eating birds. Yuck!! The headed to lunch after a drive to the beach - frustration and long story. We went to Tazikis for Mediterranean food. Yum!! Gyros and hummus. Butch was under the impression my appointment was at 3pm. I was wondering why he was “wandering” earlier and debating full restaurant food. Nope. I have to go get stuff done. Really, I could probably be late it’s just blood work. I got that done at 1pm. We tried to sit outside:
Too windy and cold!!! Burrrr. We went to the car to nap and wait out the 3pm visit with Mody in oncology.
3:00. Talked with Mody. His recommendation is conservative and he would like me to scan (CT) at 6 months rather than 12. Protocol states 6 to 12 months. We will go with his protocol. He is sending orders to Sumrall and we will set that up with them.
So. NED (no evidence of disease) the official “remission” of cancer.
I should be thrilled but I’m still cautious and scared as there were no symptoms the first time. BUT I’ll be scanned and watched. And I can be scanned and watched locally. Bonus. I will switch to Dr Brewer who is a Colorectal specialist here. And stay with Sumrall at the cancer center here for the rest.
So. Next up. Reversal!! 6 Feb. less than two weeks away. Eeek!!!
7:00 leave house
11:45: first appointment MRQ very close to three hours dang near. A full hour on the table. :( I took an Aleve prior to ward off the back ache. Yeah. Didn’t work but it kept me to where I wasn’t in super pain till the last 15 minutes. I also got sick with the glycogen they shoot you up with. I think I didn’t react last time as I got it in the IV. When you get it in a port it’s straight into your system. Made me flush and nauseous. Yuckie. And you have to have it twice. Once before you go in and once about the 45 minutes mark. Barf!! I didn’t but there for a minute I thought I would. Good thing the feeling wears off in just a few minutes!!
2:50: CT I swear 5 minutes in the tube and GONE. Whoop!
And all this time I am fasting. No food before MRQ for four hours. I didn’t eat breakfast - not thinking. Nerves? Not hungry? Unknown!
THEN CT said nothing to eat two hours prior. Funny. I didn’t finish the MRI until just before the CT time. The funny thing is I had water - lots of water and was fine until about 2pm then started getting hungry. So on the way to the hotel I got a cheese burger happy meal and I was... well....happy :)
About 6:30 we headed out and got a proper dinner at Millers Ale House. I had their dinner special of 35 fried shrimp. Butch got steak. I had 15 shrimp 1/2 a potato and a few bites of steak from Butch. Urp. I was stuffed!!
Wednesday
8:30 and 8:40: fasting blood draw and urine sample. I had said I wasn’t going to use the port. I used the port. Ha!!
After blood I got to eat in the cafeteria for the FIRST time. Really. Since July I haven’t eaten at the Mayo. I watched Butch eat there while on Optifast. Yeah. That was fun. Today I got a made to order omelet - YUM!!! I got ham with spinach, black olive, and cheese. And it was delish!! Butch had one with bacon and something. I didn’t pay attention - I was off getting tea while they cooked both of ours. All in PLENTY of time for my next appointment!
10:00 - barium enema X-ray. Ok that way freaking COOL. Ok not the enema and me freaking out prior (babbling and telling them to be nice to me and my gut - ha!) however watching the fluoroscope in action was awesome!! I’m a medically curious person and should have stuck to the medical field in my youth! So that said I didn’t dribble all the way to the bathroom - bonus. I only (?) had I would consider slight lack of control. Yay! I’m seeing some hope in that. What scared me was a consistent narrow spot a few inches into the bowel and not near the surgical sight from what I could tell.... but I’m not a doctor so we shall wait to see what he says.
12:00 pre-admit basically paperwork. Simple Simon. Got it done then we took a ride.
We drive south quite a bit and saw some HUGE beautiful beach mansions!! Looked them up on Zillow after. There is this one that I love.
Bwahahaha
Or this one. (Not for sale currently)
It’s a little further south where my more acceptably priced house is.
You have to admit this one is CUTE!!!
Ok done drooling.
No one more!!
Because who doesn’t need a house with a Harry Potter size chess board outside. Right??
Also seen on the way back. An alien.
Oh disregard!!
And the perfect license plate on a Tesla
I even got a short nap as we dropped by the hotel. Zzzz. It was lovely!!
3:30. Dr Landmann, surgeon. Answers today. Open does not mean surgical cut it means they will go through the Stoma. He will then do a purse string leaving it open to continue to heal. Ok. Relieved!! I didn’t want a center cut - not sure why. Not like I’ll avoid a scar. There will be one where the Stoma was. Oh well.
Not a lot of questions other than how he would be closing it up. He’s confident I’ll be just grand as I could hold water fairly well. Me too honestly!!
It will take some time but I know this game me more hope for normalizing fairly quick. Then I messed myself (with a pad) on the way to the hotel later - hahaha. Oh won’t be perfect at first!
The downside to this appointment was he did a flex sigmoidoscopy. Basically a short flex colonoscopy only looking at the lower parts of the colon and you’re awake. So. Now Liz and Bitch have both seen my colon and the doc was nice enough to let me get up on my elbows and see the repair in the screen. Nice little round scar tissue where he joined me together. He was quite proud of his handiwork as I’m clenching my cheeks trying NOT to shoot that took across the room. Ha!!
I told Angela she is the only one not to witness my colon. She needs to see it next - hahahaha. Yeah, she said no. Ingrate. I was going to let her in the colon club.
My schedule for colonoscopies is one year, then three, then five after that for life. Ok. I can deal with that.
4:00 appointment with nurse at Colorectal Group. Going over preop stuff.
4:30 appointment with preop group to get EKG and go over orders for surgery date. All is well on the EKG. And we are DONE for the day. Whooo hooo!
Out by 5:00
Headed to the hotel to hang loose and relax a bit.
At about 6:30
We headed out to dinner. We chose Ted’s Bison House. I had the meatloaf with garlic mashed potatoes and squash casserole. I liked the meatloaf and potatoes but wouldn’t have the squash casserole again. Butch had a bison steak with asparagus and baked potato. He wasn’t impressed with the steak :(
The off to the hotel and settled in for the night. Zzzzz
Thursday.
Up LATE. Dragged bootie. I then took a LONG time getting ready as I did a bag (flange) change as well. Finally out the door at 11 ish. We got a car wash thanks to the berry eating birds. Yuck!! The headed to lunch after a drive to the beach - frustration and long story. We went to Tazikis for Mediterranean food. Yum!! Gyros and hummus. Butch was under the impression my appointment was at 3pm. I was wondering why he was “wandering” earlier and debating full restaurant food. Nope. I have to go get stuff done. Really, I could probably be late it’s just blood work. I got that done at 1pm. We tried to sit outside:
Too windy and cold!!! Burrrr. We went to the car to nap and wait out the 3pm visit with Mody in oncology.
3:00. Talked with Mody. His recommendation is conservative and he would like me to scan (CT) at 6 months rather than 12. Protocol states 6 to 12 months. We will go with his protocol. He is sending orders to Sumrall and we will set that up with them.
So. NED (no evidence of disease) the official “remission” of cancer.
I should be thrilled but I’m still cautious and scared as there were no symptoms the first time. BUT I’ll be scanned and watched. And I can be scanned and watched locally. Bonus. I will switch to Dr Brewer who is a Colorectal specialist here. And stay with Sumrall at the cancer center here for the rest.
So. Next up. Reversal!! 6 Feb. less than two weeks away. Eeek!!!
Monday, January 22, 2018
Hair cut.
I’m so not sure about this still ...
Feels like a Utah housewife cut
What I REALLY feel like.
How tiny the pony tail was in the end.
And so it goes.
Feels like a Utah housewife cut
What I REALLY feel like.
How tiny the pony tail was in the end.
And so it goes.
Friday, January 19, 2018
A first in 5 months
Well that was a fist. I guess I was super sleepy for the bag dump in the middle of the night last night.
Not only did I dump contents on BOTH hands (thank goodness for strong stomachs and baby wipes) BUT i cracked my shin as well.
NOT a tiny crack a blood drawing crack. I assumed I would just have a bruise. Surprise!! Ouch!!
Nice socks, don’t you think? Lol left over from yesterday. It’s COLD here!!
And gouged my other knee last night too and not a CLUE how. Goodness. We need to stop these middle of the night trips before I break something!!
Not only did I dump contents on BOTH hands (thank goodness for strong stomachs and baby wipes) BUT i cracked my shin as well.
NOT a tiny crack a blood drawing crack. I assumed I would just have a bruise. Surprise!! Ouch!!
Nice socks, don’t you think? Lol left over from yesterday. It’s COLD here!!
And gouged my other knee last night too and not a CLUE how. Goodness. We need to stop these middle of the night trips before I break something!!
Wednesday, January 17, 2018
Snow!
7am
7:30am
7:30am
Same times
Grass is almost covered. More snow sticking around the edge of the pool.
An inch has been reported. It’s possible!
My view from work
It’s accumulating
Out front.
Bigger flakes and every now and then a gust of wind will blow snow off roofs. It’s really not windy just an odd breeze was blowing there for a bit!
And with that. It’s 9:44 and sunshine is coming out!!
Yes that’s blue sky!
How did I know? Looked up from work and it’s WAY brighter out there!!
(Marked out so you can’t see what I’m working on!)
Maybe I should fire up the hot tub for lunch?
Tuesday, January 16, 2018
Monday - MLK day
Mom and I ran away on MLK day - well, it was planned, so can that really be called "running away”?
I wanted to go to Cochran to drop off my stuff at the consignment store... and Mom wanted to get out of the house! I had planned on getting her at 9:30, but there was a wrinkle in my plan because I'm a nice 2nd mom (guess that should be 3rd). Liz's friend and my adopted daughter came through town after coming home from the Netherlands - she was over visiting her birth parents - ha! She and her boyfriend were coming through on their way to Tallahassee and stopped to visit with Liz. They went to dinner the night before and caught up... and then they spent the night. Well, Liz was leaving at 7:30 for her trip to Boston (first TDY for this new adult job) - so she left Clair and Ian asleep at the house.
Well, I woke them up at 8:30 to ask them if they wanted to go to breakfast - do you see the plan here? Get them up and moving, feed them and get them out the door. Well, apparently 1/2 the town thought Waffle House was the place to go on this day too... we got there just as the rush had hit - we were the tail end, so service was SLOW - unusual for WaHo!! AND they had a new server for us and he didn't call food in well, or fast. Sigh. Oh, well, we ate, headed home then the kids had to pack. I think I got to Mom's at 10:30.
We had a nice drive on the way to Cochran - mom got to look around - she can't do that normally as she's driving! I have learned that in my altered brain *I* can't look around and drive too anymore... I drive off the road... or all over the road - yikes!! But we made it there in one piece and dropped off all my stuff. The BIG box that was shown at the clean out was NOT picked up - well, for long. I made it to the kitchen and promptly put it down - it was pulling on my hernia - ouch! I put it down and grabbed two more smaller boxes to put it in and divided it by three to get it to the car! I loaded in three small boxes, the one big box, now 50% full, a bag of Butch's pants, and two bags of sheet sets (complete). Got that all dropped off and logged in. We then looked around the place and found NOTHING. Sigh. Drove off empty handed. We got about a block or 10 away when I remembered I had that wooden high chair in the back seat - crap!!! I turned around and dashed in to drop that off as well - no since ingoing all the way back home with it!! I'll get a smaller chair top one for the future as the wooden one was NOT convenient as it has no belt and was not too sturdy either.
So that done, we headed to the house again... there were many miscommunications on the way home and a lot of forgotten things... we had commented "we need to go by that on the way home" and forgot what it was...I finally remembered it when I got to Perry - it was checking on the construction on the Striplings store. They are coming along just fine and I noted it's the EXACT same plan as what they have in Warwick. I guess if you pay for a set of floor plans, you reuse it time and time again!
So, that done, I dropped mom at her house so she would fix Dad lunch and be there for the bug guy and the lawn mower drop off. Dad was sure happy to get his mower back!! Mom said as soon as he got it he hooked up his trailer and headed to the back 40 to collect pecans.
I wanted to go to Cochran to drop off my stuff at the consignment store... and Mom wanted to get out of the house! I had planned on getting her at 9:30, but there was a wrinkle in my plan because I'm a nice 2nd mom (guess that should be 3rd). Liz's friend and my adopted daughter came through town after coming home from the Netherlands - she was over visiting her birth parents - ha! She and her boyfriend were coming through on their way to Tallahassee and stopped to visit with Liz. They went to dinner the night before and caught up... and then they spent the night. Well, Liz was leaving at 7:30 for her trip to Boston (first TDY for this new adult job) - so she left Clair and Ian asleep at the house.
Well, I woke them up at 8:30 to ask them if they wanted to go to breakfast - do you see the plan here? Get them up and moving, feed them and get them out the door. Well, apparently 1/2 the town thought Waffle House was the place to go on this day too... we got there just as the rush had hit - we were the tail end, so service was SLOW - unusual for WaHo!! AND they had a new server for us and he didn't call food in well, or fast. Sigh. Oh, well, we ate, headed home then the kids had to pack. I think I got to Mom's at 10:30.
We had a nice drive on the way to Cochran - mom got to look around - she can't do that normally as she's driving! I have learned that in my altered brain *I* can't look around and drive too anymore... I drive off the road... or all over the road - yikes!! But we made it there in one piece and dropped off all my stuff. The BIG box that was shown at the clean out was NOT picked up - well, for long. I made it to the kitchen and promptly put it down - it was pulling on my hernia - ouch! I put it down and grabbed two more smaller boxes to put it in and divided it by three to get it to the car! I loaded in three small boxes, the one big box, now 50% full, a bag of Butch's pants, and two bags of sheet sets (complete). Got that all dropped off and logged in. We then looked around the place and found NOTHING. Sigh. Drove off empty handed. We got about a block or 10 away when I remembered I had that wooden high chair in the back seat - crap!!! I turned around and dashed in to drop that off as well - no since ingoing all the way back home with it!! I'll get a smaller chair top one for the future as the wooden one was NOT convenient as it has no belt and was not too sturdy either.
So that done, we headed to the house again... there were many miscommunications on the way home and a lot of forgotten things... we had commented "we need to go by that on the way home" and forgot what it was...I finally remembered it when I got to Perry - it was checking on the construction on the Striplings store. They are coming along just fine and I noted it's the EXACT same plan as what they have in Warwick. I guess if you pay for a set of floor plans, you reuse it time and time again!
So, that done, I dropped mom at her house so she would fix Dad lunch and be there for the bug guy and the lawn mower drop off. Dad was sure happy to get his mower back!! Mom said as soon as he got it he hooked up his trailer and headed to the back 40 to collect pecans.
How much does it cost??
How much does it cost for an ambulance ride 100 yards and transfers to and from beds??
Yep $302.20. Yikes!!
Yep $302.20. Yikes!!
Monday, January 15, 2018
Hair loss.
Well I just thought it was slowing down. :(
TINY pony tail now :(
Yep time to cut it.
Next Monday.
TINY pony tail now :(
Yep time to cut it.
Next Monday.
Saturday, January 13, 2018
We have tiny hairs!!
6 weeks and two days after chemo and I do believe we have hair growth from all the “thinning” that I was warned of! That was a hell of a thinning. Over 50% of my hair fell out! I can feel little short (I mean unmeasurable short) hairs up there!!!
Pretty much no way to photograph either. But Liz looked and thought she could see some little hairs at my bangs line. Woo hoo!
Excerpts from an update letter to my sister:
Re question in my upcoming surgery being in two spots...
My “stick it back together surgery was done with the resection. They pulled out 32cm aka 12in of rectum and sigmoid colon. They then disconnected the remaining colon from the transverse colon and splenic flexure and bring it down to make my “new” colon connection. They then did a baker closure (side to end like a T with the bottom being the puny 1” of rectum to the top of the T leaving. Lip to one side or the other (assume coming in from left and crossing over the rectum as that’s the “normal” direction that shows on the pictures. So the right side of the top of the T is coming in from my remaining colon and the left side would be the “pig tail” that will be the new “holding spot for stool”.
**not on my letter to my sis is the last few days my colon had decided to “play” again. As I’m sleeping Super sound and not emptying in the middle of the night I don’t know if I’m getting “overflow” from the top of the ileostomy to the bottom that leads to the colon. Hard to tell BUT so far I can hold it and get to the potty but it’s TINY amounts and hard to hold. Not looking good on my holding capacity in the future :( oh well we shall deal with that as it comes. **
So that’s done. They gave me the ostomy to let all that heal in there over what was to be 6 weeks after chemo but now will be more like 12 thanks to that pesky gallbladder and the healing they want me to have after that experience.
The hernia will be repaired when they do my reversal. They will see the intestines back together, drop it in the hole then sew up the hernia. Let’s hope they can pull that off. They won’t use mesh, so thats good. BUT mine is 11x5 inches I’m sure. It spans from mid section to the middle of my side. Sigh. Bigg’en!! But I did send a message to the surgical team to ensure they would be repairing it at the same time and if not they would arrange a tag team to have someone come in and do it after the ostomy repair.
So. Yes I will have much (two spots) scaring in my intestines and will have to worry about scar tissue (which I seem to get adhesions easily) as there were a lot when they went in for the gallbladder. So there is that concern. Me? I’m going to assume I’ll be grand!! I can eat ANYTHING I want to eat now. I eat nuts and salads, although I will admit salads scare me in large quantities so I just do small salads for now.
My bowels are going to be a challenge for a while as they have been unused for 7 months (8 by the time I have surgery) AND my body doesn’t seem to wake easily after surgery. I have to pass gas to go home after surgery. I have
Heard the first month is a living hell without that rectum. I have bought a bidet and have A&D ointment on hand already!! Oh and wipes.most folks say they poop 30x. A day the first few weeks then it should slow and you should start getting a little more control but expect that your new normal will NOT be normal. The first year or two I should be prepared for many an accident and to be prepared at all times as urgency is a bugger with little control.
WORSE case is that I don’t get control and my life is hell and I chose to go back to an ostomy - but this time odds would be that I would go colostomy and they are easier to control and output more solid waste. Not the case with the ileostomy which at best had oatmeal consistently if I’m lucky (I’m not lucky!) I’m also horrible at eating small meals multiple times a day. I eat a late breakfast - lunch. Then dinner and some snacks. After Christmas is going to put pounds on me. I got candy. Yum!!! I’m eating it all. Oink!!! The good news is I still can’t eat large amounts. I THINK I can. Case in point I ordered three tacos from Tacos and M ore (soft ones) and I ate 1.5. I have lunch for tomorrow either way!! Bonus! I always have left overs in the fridge!! Ha!!
In other forefront’s I have scheduled my hair cut and possible color. We shall see if she thinks my hair is healthy enough to color or if it would be good to highlight tips at least!! Not until the 22nd to allow time to color if she thinks it’s a wise choice. Mostly looking for cover up to the balding (spots on the back of my head and the bottoms -aka around my ears and back of my neck). I was reading blogs they are all saying hair growth starts at 4 weeks post chemo. Mine isn’t growing. No peach fuzz at all :(. Lizzie looked. I’m now 5 weeks post chemo. So here’s hoping it will start soon. And here’s hoping it’s curly! 😜
Oh, no change after removal of gallbladder so she was dead or non/functional at best. Poor thing. Good for me as I note NO difference other than no more attacks. Yay for that! That pain was worse than labor AND my LAR!! Not that I thought either was horrible. Again tough old bird! Ha! Hey if I take oxy the pain is horrible!! LOL.
I’m gaining strength and getting over a lot of the affects of chemo. My hands hurt less in the cold. I can eat ice cream. I don’t have bloody sinus buggers anymore. My feet are sort of numb but not bad. They do have very thick skin right now. I do have cold sensitivity handling things but not as bad. It’s slowly going away. I notice it less. Taste buds are recovering. Energy is gaining. Not as fast as I would like but I don’t do anything because I work all day BUT I did move out of my bed and to the dining table this week. That’s something new!! I got dressed and left the house to make hair appointment- been putting it off for weeks now.... not sure why. So I’m progressing. I walked Sams one last weekend AND Target in the same day! That’s a lot. Granted I rested between them. :)
So that’s my story.
Pretty much no way to photograph either. But Liz looked and thought she could see some little hairs at my bangs line. Woo hoo!
Excerpts from an update letter to my sister:
Re question in my upcoming surgery being in two spots...
My “stick it back together surgery was done with the resection. They pulled out 32cm aka 12in of rectum and sigmoid colon. They then disconnected the remaining colon from the transverse colon and splenic flexure and bring it down to make my “new” colon connection. They then did a baker closure (side to end like a T with the bottom being the puny 1” of rectum to the top of the T leaving. Lip to one side or the other (assume coming in from left and crossing over the rectum as that’s the “normal” direction that shows on the pictures. So the right side of the top of the T is coming in from my remaining colon and the left side would be the “pig tail” that will be the new “holding spot for stool”.
**not on my letter to my sis is the last few days my colon had decided to “play” again. As I’m sleeping Super sound and not emptying in the middle of the night I don’t know if I’m getting “overflow” from the top of the ileostomy to the bottom that leads to the colon. Hard to tell BUT so far I can hold it and get to the potty but it’s TINY amounts and hard to hold. Not looking good on my holding capacity in the future :( oh well we shall deal with that as it comes. **
So that’s done. They gave me the ostomy to let all that heal in there over what was to be 6 weeks after chemo but now will be more like 12 thanks to that pesky gallbladder and the healing they want me to have after that experience.
The hernia will be repaired when they do my reversal. They will see the intestines back together, drop it in the hole then sew up the hernia. Let’s hope they can pull that off. They won’t use mesh, so thats good. BUT mine is 11x5 inches I’m sure. It spans from mid section to the middle of my side. Sigh. Bigg’en!! But I did send a message to the surgical team to ensure they would be repairing it at the same time and if not they would arrange a tag team to have someone come in and do it after the ostomy repair.
So. Yes I will have much (two spots) scaring in my intestines and will have to worry about scar tissue (which I seem to get adhesions easily) as there were a lot when they went in for the gallbladder. So there is that concern. Me? I’m going to assume I’ll be grand!! I can eat ANYTHING I want to eat now. I eat nuts and salads, although I will admit salads scare me in large quantities so I just do small salads for now.
My bowels are going to be a challenge for a while as they have been unused for 7 months (8 by the time I have surgery) AND my body doesn’t seem to wake easily after surgery. I have to pass gas to go home after surgery. I have
Heard the first month is a living hell without that rectum. I have bought a bidet and have A&D ointment on hand already!! Oh and wipes.most folks say they poop 30x. A day the first few weeks then it should slow and you should start getting a little more control but expect that your new normal will NOT be normal. The first year or two I should be prepared for many an accident and to be prepared at all times as urgency is a bugger with little control.
WORSE case is that I don’t get control and my life is hell and I chose to go back to an ostomy - but this time odds would be that I would go colostomy and they are easier to control and output more solid waste. Not the case with the ileostomy which at best had oatmeal consistently if I’m lucky (I’m not lucky!) I’m also horrible at eating small meals multiple times a day. I eat a late breakfast - lunch. Then dinner and some snacks. After Christmas is going to put pounds on me. I got candy. Yum!!! I’m eating it all. Oink!!! The good news is I still can’t eat large amounts. I THINK I can. Case in point I ordered three tacos from Tacos and M ore (soft ones) and I ate 1.5. I have lunch for tomorrow either way!! Bonus! I always have left overs in the fridge!! Ha!!
In other forefront’s I have scheduled my hair cut and possible color. We shall see if she thinks my hair is healthy enough to color or if it would be good to highlight tips at least!! Not until the 22nd to allow time to color if she thinks it’s a wise choice. Mostly looking for cover up to the balding (spots on the back of my head and the bottoms -aka around my ears and back of my neck). I was reading blogs they are all saying hair growth starts at 4 weeks post chemo. Mine isn’t growing. No peach fuzz at all :(. Lizzie looked. I’m now 5 weeks post chemo. So here’s hoping it will start soon. And here’s hoping it’s curly! 😜
Oh, no change after removal of gallbladder so she was dead or non/functional at best. Poor thing. Good for me as I note NO difference other than no more attacks. Yay for that! That pain was worse than labor AND my LAR!! Not that I thought either was horrible. Again tough old bird! Ha! Hey if I take oxy the pain is horrible!! LOL.
I’m gaining strength and getting over a lot of the affects of chemo. My hands hurt less in the cold. I can eat ice cream. I don’t have bloody sinus buggers anymore. My feet are sort of numb but not bad. They do have very thick skin right now. I do have cold sensitivity handling things but not as bad. It’s slowly going away. I notice it less. Taste buds are recovering. Energy is gaining. Not as fast as I would like but I don’t do anything because I work all day BUT I did move out of my bed and to the dining table this week. That’s something new!! I got dressed and left the house to make hair appointment- been putting it off for weeks now.... not sure why. So I’m progressing. I walked Sams one last weekend AND Target in the same day! That’s a lot. Granted I rested between them. :)
So that’s my story.
Thursday, January 11, 2018
Closet cleaning.
So today was the day I decided to clean the closet. Mom came over for moral support and to “judge” fit and function of clothing.
This “pile” is the slacks to have taken in. Maybe. I’m debating as I have Many pants in the closet that are “good enough” so I may hold off on these for a bit. Who knows. They may end up in consignment.
This BIG box is full of consignment.
Bag of winter tops that can’t go in just now as they are taking spring.
The sad thing is my closet is still chuck full ... the only evidence of clothing removed is the empty hangers on the bottom... ok and very few “play clothes”
Not pictured is the two bags of trashed paint clothes. I’m not going to take pictures of them in the garbage. Nope. Feet up chilling out now!!
So. I have a clothing basket full of who knows what I’m here too that needs to be “gone through” as well. I’m sure I have a spring box out in the garage as well. Crap crap and more crap.
Time to cull some more.
This “pile” is the slacks to have taken in. Maybe. I’m debating as I have Many pants in the closet that are “good enough” so I may hold off on these for a bit. Who knows. They may end up in consignment.
This BIG box is full of consignment.
Bag of winter tops that can’t go in just now as they are taking spring.
The sad thing is my closet is still chuck full ... the only evidence of clothing removed is the empty hangers on the bottom... ok and very few “play clothes”
Not pictured is the two bags of trashed paint clothes. I’m not going to take pictures of them in the garbage. Nope. Feet up chilling out now!!
So. I have a clothing basket full of who knows what I’m here too that needs to be “gone through” as well. I’m sure I have a spring box out in the garage as well. Crap crap and more crap.
Time to cull some more.
Wednesday, January 10, 2018
Post I put in my “tough chicks” group
Not feeling like a tough chick today.
Feeling like a marshmallow all week. Paperwork paperwork paperwork to get covered for work leave. New boss and the unknown if that have me stressed. THEN I bit the bullet and went to the hairdresser today to schedule my appointment to cut and color. Or just cut. Depends on the health of my hair. Then I got tears eyed on the way home. WTF? I have gone short before why is THIS causing tears??
I sometimes think it’s because NOW I have time to think to ponder. There is no more planning the attack. The attack is over. There is only a reversal to test for and accomplish. So why the freak am I so SAD lately??
Finally sinking in?? Who knows. But I’m an emotional basket case this week.
Feeling like a marshmallow all week. Paperwork paperwork paperwork to get covered for work leave. New boss and the unknown if that have me stressed. THEN I bit the bullet and went to the hairdresser today to schedule my appointment to cut and color. Or just cut. Depends on the health of my hair. Then I got tears eyed on the way home. WTF? I have gone short before why is THIS causing tears??
I sometimes think it’s because NOW I have time to think to ponder. There is no more planning the attack. The attack is over. There is only a reversal to test for and accomplish. So why the freak am I so SAD lately??
Finally sinking in?? Who knows. But I’m an emotional basket case this week.
Thursday, January 4, 2018
The full report - gallbladder
So basically I’m a hot mess inside.
Yeah photos are horrible!!
And I make pretty BLACK and blue green gallstones. Hum. Not sure if that’s pretty or not.
The BEST words on here?
No evidence of malignancy.
Sweet!!
Just gangrene and lots and lots of stones!!
If you read the size of the gallbladder:
11.5x4x3
Wall thicknesses:
.5 cm each side so interior is now:
10.5x3x2
Largest stone was:
2
So basically wall to wall!! Whoops!!
Other than that the wounds are healing fine. The steri-strips were pulled off today. They were driving me buggy and the drain holes scab fell off so I figured it was safe it was. They’re all fine. Healing great and sealed.
ONE less thing to worry about!!
Yeah photos are horrible!!
And I make pretty BLACK and blue green gallstones. Hum. Not sure if that’s pretty or not.
The BEST words on here?
No evidence of malignancy.
Sweet!!
Just gangrene and lots and lots of stones!!
If you read the size of the gallbladder:
11.5x4x3
Wall thicknesses:
.5 cm each side so interior is now:
10.5x3x2
Largest stone was:
2
So basically wall to wall!! Whoops!!
Other than that the wounds are healing fine. The steri-strips were pulled off today. They were driving me buggy and the drain holes scab fell off so I figured it was safe it was. They’re all fine. Healing great and sealed.
ONE less thing to worry about!!
Saturday, December 30, 2017
Hair update and Audrey update
Hair update today.
Looks can be deceiving. Until you get closer.
Yep that’s scalp you see there. It’s SUPER thin there.
Again. Super thin. Bangs are barely there anymore.
Back of the head. Not sure if that’s a scan from hair falling out or not but it does come out in clumps at times. So who knows. Plus - I don’t feel anything back there except I know my brush is hitting scalp when I brush.
The hair that came out from my shower. Yeah. Showering makes it come out faster. I brush before and after shower so 1/2 is prior to shower, 1/2 after. Sigh.
This isn’t posted for sympathy, just documenting what’s going on. This is one month to the day from the last disconnect from chemo pump. You would think this would slow down by now, but nope. Sigh. This too shall pass. We will wait for it to grow back and see what color/texture I get. I’m voting GRAY and curls.
Still doesn’t look too shabby. Still debating going short as the braid and pony tail get thinner and thinner.
Update on bleeding stoma or bleeding skin around stoma. There is no blood at all upon flange change. No blood. One raw spot on the right side... brushing around both sides. Nothing horrible. It’s looking good. Well good, since it’s been abused a bit during surgery. So all is well in Audrey’s world. Or at least her neighborhood.
Looks can be deceiving. Until you get closer.
Yep that’s scalp you see there. It’s SUPER thin there.
Again. Super thin. Bangs are barely there anymore.
Back of the head. Not sure if that’s a scan from hair falling out or not but it does come out in clumps at times. So who knows. Plus - I don’t feel anything back there except I know my brush is hitting scalp when I brush.
The hair that came out from my shower. Yeah. Showering makes it come out faster. I brush before and after shower so 1/2 is prior to shower, 1/2 after. Sigh.
This isn’t posted for sympathy, just documenting what’s going on. This is one month to the day from the last disconnect from chemo pump. You would think this would slow down by now, but nope. Sigh. This too shall pass. We will wait for it to grow back and see what color/texture I get. I’m voting GRAY and curls.
Still doesn’t look too shabby. Still debating going short as the braid and pony tail get thinner and thinner.
Update on bleeding stoma or bleeding skin around stoma. There is no blood at all upon flange change. No blood. One raw spot on the right side... brushing around both sides. Nothing horrible. It’s looking good. Well good, since it’s been abused a bit during surgery. So all is well in Audrey’s world. Or at least her neighborhood.
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