6 Month checkup @ 4 years, job interviews and life

Well, it's that time of year again... 4 year checkup.

I'm still convinced that the checkups that are occurring are NOT what I need.  I'll get into the why in a bit, but I'm always shocked that I can be stoic that nothing is wrong for MONTHS and all it takes is these damn checkups to send me into depression and freaking out. Sigh.  Why?  Who on earth knows. 

I do know that when you didn’t note or know of anything that was going wrong in your body when you HAD cancer, you question every single tweak and twinge you have from that point forward…. And it sucks.

So – part of why I don’t think this is over is because I’m back to having hot flashes like I was before I found out I had cancer… I simply thought “well, I’m 50, this is it, this is menopause.”  Surprise, it was NOT!  I had blood work later on that indicated that, nope, I was not in menopause and those hot flashes was my body freaking out.  So… am I in menopause now?  Here’s hoping. 

Let’s back up to the beginning of this story, on the 4^th I noted something wasn’t quite right in the nethers and knew I had an appointment with the oncologist very soon after getting back home, so asked him when I was in his office about who I should see.  He recommended a gynecologist office and I went to see them a week to the day after seeing the oncologist.  The agreement was if they didn’t know what it was at the gynecologist I would be back to him for further investigations.  The good news is they know what it is, the bad news is what all doctors say here: I would just let it be.

Really they are a community of non-intervention.  Sometimes that is great, sometimes that just freaks the rest of us out – see the comment of not thinking that my visits now are effective.  Part of me thinks that I should trust them on the facts, part of me doesn’t really trust anyone anymore!

So the bottom line of my exams that happen with Oncology – they do an ultrasound of my abdomen.  They can NOT see my whole liver because 1) its fatty and 2) its LARGE – mostly because I’m large.  So they never really get a good picture of the back of it, nor the internal portions of it due to the issues listed above.  I’m more apt to really think there isn’t anything in there because my liver enzymes are in a good range, so really, I don’t know that there is anything there.  I DO have problems that they are no longer looking at my lungs at all.  There were nodules in the past I don’t know if those nodules were stable, or if they were the same nodules or if there are different nodules.  When I ask they say they are nothing to be concerned about…. Yeah, says YOU.  Sigh… I know, I know I should trust them to know their business.  BUT fast forward to rattles when I’m laying down at night and in the morning that are unexplained and I have gone to a normal doc who listened and didn’t hear anything and said “ah, it’s nothing”.  They do not want to expose me to x-rays anymore.  Well, then do an MRI dorks.  They don’t do those here often, so it’s not something they will order unless there are HUGE flashing red lights..  So… this with the combination of my newly returned hot flashes have me concerned.  I started with the simple blood draw.  Am I in menopause?

Oh, yeah, when the oncologist asked if I have night sweats, they will ONLY look at you hard if you are sweating through clothing and wetting sheets.  Well, hell I didn’t do that when I had cancer the last time in it’s full glory.  I was having hot flashes like I have now where I’m in and out of bedding all night and sweating and sleeping with windows open in 50 - 60 degree weather.  This is either the return or its menopause.  Good news is I’m forcing them to look at it.

Better news is when I get back to the states it’s time for my colonoscopy AND I will have a head to toe exam and have them do a full CT panel to make sure that all is well inside… but will I trust it even then?  Hard to know… but I’ll let you know.  I told the doc here it sucks when you had cancer without what you would have considered symptoms so now anything changes and you question if it’s cancer or not… sucks, and it’s not going away apparently.

Sigh.  In other news I have had two interviews in the last week or so.  One in Maryland the week of the 4^th (can’t remember the exact date – maybe the 7^th?) and one on the 16^th.   I should know about the Maryland one in two weeks and the one on the 16^th in about 4 weeks.  AND I have another on the 20^th as well… so things are looking up on the interview process.  I heard that only 12 interviewed for the one Friday.  Not sure who interviewed, but we shall see… it’s really not one I want, but I’ll still be sad if I’m not even looked at twice.  I really hope the interview on the 20^th is my “shoo-in” job as it’s where I worked right before I came here and one that I would be returning to regardless… not that specific job, but in that area… so here’s hoping!  I get my hopes up on these jobs and then don’t get them and it makes me sad and feeling incompetent… so we’ll see where this leads in the long run.

Conversational frustrations.

If I’ve heard it once, I’ve heard it 30 time “at least they caught it early” and I wanted to scream.

Number one i have discussed my staging with very few people so just how do you know it was early? This bad boy was growing 10 plus years. Early for me would have been 10 plus years ago when this was just a pesky polyp.

Instead I answered “yeah, I’m in the positive side of the 60/40 split for 5 year survival”.

I know it’s mean but it’s good to see their jaws drop. Yeah. This is my statistical number, but you know what? I’m more than a statistic. I’m firmly on the 60% and going no where folks!

Then again if it rears it’s ugly head again I’ll do like I did this time, put one foot in front of the other and deal with it. Although this time I would ask a ton more questions with my tiny knowledge base and my HUGE reach back to the folks at Colontown.org (yes that was a shameless plug!)

Shopping and poop talk.

For those that don’t want the poop talk, I will limit it to the BOTTOM (haha see what I did there?) of this post and you can skip it.

Sally and I went out to breakfast with Ina this morning. It was good to see her again. Wednesday night Sally and Ina had their girls dinner at Ruby Tuesday’s and they invited me along. There were 8 total including me. Most were in their 70s and 80s with the exception of one gal and me. I think she’s probably in her 50s as well...maybe younger I’m not a good judge of ages. Anyway it was nice to meet them all and have dinner with them.

It’s always nice to see Ina. She seems to be doing OK after the loss of her husband Robert.

After breakfast Sally and I headed to Elgin to get some fruits for her fellowship meal tomorrow at her church. I dropped her off and went over to the Bx to look for a headboard as I had seen them at out BX a while back. I had my mind set on a black leather one but THIS one caught my eye immediately:





What I didn’t realize is that they were selling me the floor model. BUT it was in great shape. We took it apart and put it in the back with minimal issues.

That being said I was having some “issues” today and had more than my fair share of potty stops. BUT I did make it through the a small part of the BX, a bit of the commissary, Lowe’s and a bit of Sams club as well before I realized as I was getting gas that my issues needed me to be home for a bit. And we headed to the house.

I didn’t accomplish much else, as evidence of the headboard still in the car! Soooo life is still good, just working through today’s issues and hoping things will calm soon.

I did come home, take a shower and put my sweats on and did some laundry and took a nap (short one as the phone woke me, but that’s OK too).

**poop talk**
This is what I posted on my reversals group.

Ok over the last few weeks I have come to the conclusion that if things are going well I have a HUGE sense of guilt and don’t want to say anything to everyone on the group because of the number who are suffering after reversal and, well, it feels like bragging. BUT for this facing their reversal, there is hope, and a few let downs. (Sorry long winded)

Im 4weeks4days post reversal, 1ft rectum/sigmoid colon removed, stump of a rectum left (1/2” maybe) and a side to end connect (tiny pseudo-pouch?)

For the first three weeks it was poop central. I decided because I had the time off work I would let my body do it’s thing. I would see if it work out it’s own issues and behave, if not I had fiber and all that Jazz to fall back on. I don’t take pain pills and am only taking Gabapentin, a stool softener (too chicken to stop those just yet), a multi vitamin and a probiotics (gummies type)

I was shocked that at about three weeks of constantly pooping myself at night and living in fear of pooping myself (with protection) in public that the switches started flipping. I started to NOT poop at night. Lots during the day still but my nights were mostly mine!! Yay

Then things started to slow down during the day and for about 5 days I had been pooping at 9pmish and not much during the rest of the day. As long as my stools were easy to pass I kept going with everything the same on meds.

I got so Cocky I drove 5 hours to Florida to get some work done on our little House here behind my mother-in-laws. I was wondering what the drive would do to my schedule but I’m happy to report things stayed pretty steady the first 4 days.

Today is day 5 and I’ve had a bit of diarrhea and urgency. Happy to report that Always incontinence pads work pretty good and my clothing survived. So. If it’s only every 6 days I get a “clean out” day I can live with that. But there IS hope. Your body can adjust. It’s not like it used to be, but it’s all good!!

I joked to my MIL that I can stay out until I run out of supplies! So what that I had to poop in three stores today. Then as the uncontrollable urges hit again while getting gas I realized that, nope, supplies or not, it’s time to go home and let this play out close to a potty!

Updates from Florida

Yeah. I decided I would do my rest and recuperating in Florida like a proper diva. Now to have warmer weather, a beach chair and a drink with an umbrella and I would be set!!

I got here Tuesday night after getting my MRI done. The MRI is to look at my spine to make sure there are no compressed or bulging disks causing the numbness in my legs. I still think it’s all neuropathy from chemo and as I wasn’t moving much, I simply didn’t notice how far it had progressed. The answers to that will be found out soon enough. I’m big sweating it just yet. Nothing I can do about any of it anyway.

So. Last I updated things in the healing front were going well. I participated I. My first Undie Rin for colon cancer.






Sherry’s boyfriend Josh. Tagged on his bum, appropriate for a colon shot anyway. Yes that is a Giant colon behind us.





The three of us ready to go





Liz with her “What’s up your butt” shirt.





So this ambulance was following me. It was funny he first quarter mile.





By the 1/2 mile I was beginning to wonder if he knew something I didn’t. Ha! Although I have walked upwards of two mikes in a day recently I have discovered it’s not all at once!! Yikes!!





Sherry and I at the finish





Butch and I at the finish amazing this is such a good shot as I couldn’t see a thing!!





Lizzie coming across the finish line. She cut two minutes off her time fro
The 5k ran the weeks prior. Yay Lizzie!!





And a fun time was had by all!!

The day after Lizzie and I drove to Ikea to shop and to visit with Angela. She drove down and met us. We shopped out hearts at in Ikea (buying surprisingly little) had pizza at Antico’s pizza.






They have the BEST pizza. Check them out if you’re ever close!! It’s as close to TRUE Italian pizza as we have found stateside.

That done along with a Target run and we headed home.

Long fun filled weekend!

Flash forward to me making some calls for air conditioning heater replacement for the the tiny house. Why you ask? Well one emergency call from kids last year that the A/C was on the fritz on the weekend of all times led us to know it’s time. So. Everyone wanted to give me quotes on Wednesday. I HAD planned on driving down on Wednesday. Guess not. I decided to bite the bullet and drive down after my 9am MRI. Thinking that it should be quick. *insert maniacal laughter here*. Yeah what they didn’t tell me was blood work was first then an hour after that was the MRI. So I didn’t go in until 10:30. I came out at noon. Back just screaming. I hate MRIs. That table is too hard!!

So seat heater is a wonderful invention as it goes up the back a bit. I had it on for parts of my drive.

I had to go home from that, eat and pack. On the road by 2pm. Not shabby. By the time o got here I just wanted to lay down and relax, so that’s just what I did. Crawled in bed and read and played on electronics.

I didn’t even disturb my bowel habits too bad. Whoop whoop!! Still had 9pm poo and bed. Yeah!!

Wednesday was four quotes and even a nap as the 1pm came early and the next one was at 3pm. Yeah!! Nice nap!!

So today is Thursday. Sticker shock is in full affect. $4500 to $5645. U had to justify my choice to go with the cheapest. The REASON wasn’t because of price. It was because he was the only one to mention the $400 rebate from the gas company AND will fill out all the paperwork and file it and pass the saving on to me up front. Sweet!! I like one stop shop!! So, choice made.

Sad fact was someone “rang my bell”at the front door. Yeah. It noworkie. So I went out to take it off to check battery size as it’s a wireless one. Uhm, yeah, I broke it. Whoops!!! In my defense it’s about three years old now, so it was delicate. That’s my story and I’m sticking to it!! Ha!!

I think parts of the higher price is I’m not doing a simple a/c replacement. Why would I do something so mundane? Nope. So, when the folks had the a/c put in they put it here:






This is it. Smack dab in the middle of the back of the house! Right next to the back door and RIGHT under windows.





Yeah can you tell that’s the living room windows. Yikes!! Noisy in the summer.

Where do I want it?

Right here:





It’s in the west side if the house... the only down side is it’s planned to be in the wrong side of the fence. Now realistically it is just a deterrent for honest folks. The gates are never locked so it would be easy enough for anyone to off with the unit as it is. But it’s OLD so who wanted it?











And realistically it’s sort of out of sight when the azaleas are in bloom and has leaves. BUT. Going to get a fence there anyway. Why???

This:





That my friends is three windows in the house next door boarded up. Why ? Who knows but it’s a crappy job and it’s all sorts of messed up with plywood, metal and some fake brick veneer looking stuff. Not sure what’s going on over there. Not sure I want to know!! They are odd ducks.

So while out there I snuck this picture. See the pink dog in the distance? Gone are the days of folks not stepping out of their house fully put together. (Guilty as charged a lot of the days)





A closeup. I feel I can show this as there is a shrub blocking her face. Hahah. Wonder if bunny slippers are involved?






During today’s adventures I also listened to my husband and ordered my blinds for the last two rooms in the house - coral bedroom and side window in the living room. A bit more sticker shock... but I bought them anyway. Done and done.

Now to get a fence installed on the side of the house I’m having the A/C moved to.... and a few other odds and ends and this will have been a very success trip indeed. Finding a handyman to remove our attic fan would be icing on the cake, but doesn’t look like it will happen. Sad face.

Update on wound - which is no longer gross

So I’m at 3 weeks and 2 days post surgery and I’m really shocker how quickly I have healed. From gaping weeping hole to nicely scabbed booboo.  I should measure it, but I would say it’s 1” x 1/2” and itches!!  Good thing fir layers between my scratchy finger and it!



The skin lines and shapes are from wearing the binder 24/7 except to shower and change from one binder to the other for washing. This is my extra layer to keep me from mess in with it too much!



The rest...well, it’s an adventure 😁. I’m really taking if well now. I’m still working on control, but it’s not quite there...accidents while out today, but I can’t stay house bound anymore. So I go out and deal with things as they happen.  Today I got to visit Home Depot’s potty...take some time...put myself back together again. Good news is this doesn’t require Depends, just incontinence pads. Could be worse!



I also started sending out a lot of my unused ostomy supplies to those who can use them from my Facebook ColonTown groups. I mailed two packages today and found out about a war veterans place in Milledeville to take the rest to. Worthy cause.



This weekend is the colon cancer Undie Run. Yeah, I’ll be walking. I think I can do a mile...as long as I can stroll!  It should be fun. Liz is going to run the 5K and Butch and I will be walking. Should be done by noon.



Should be pictures of this to come!

Funny story only I would laugh at

  I was home doing stuff around the house and decided to go to do errands. My pad was slightly soiled from tiny leaks (yeah we all know the drill)...so I removed it, cleaned up and went on my way. A lot of walking in Lowes to the BACK of the store, so of course you have to look at everything on the way to checkout. Finish up there and head to a waxing place to FINALLY get my legs done... strip pants off and there’s a spot. What the??  Looks like A&D.... feel my undies to see if I need to adjust my pad  possibly. NO PAD!!  What the??  Apparently I neglected a very important step in my process!   Goodness. True test of my emergency purse pack!!  Extra undies, check, plastic bag, check. Good lord!  Ah well, Could have been way worse!!  I survived and even went on to grab some sugar to make cookies as my shirt was long enough to cover the tiny spot

Proof positive that it’s important to get trial runs in there before heading back to work.

Pooping in public...

Well, I have what I wanted. Poop in daylight hours. Ok now to calm the clustering and NOT poop myself when out and about.

Went to three stores. Had to poop in two. Had accidents in two. Little tiny amounts of poo, but still not great enough control ... I know I have to poo. I clench. Some just sneaks out. Sigh. I have pads for that reason and I was able to test my travel bag today. Passed the test so to speak.

Only 2 weeks and a few days out. Not disheartened as I have FULL nights of sleep. So it’s easier to rebound as I’m not nearly as emotional as I would be if sleep deprived.

There’s still hope and I will continue to try and get a grip as it were in the situation.... and the saga continues.

Odds and ends and Stoma wound healing

Look how pretty this variety of daffodils is!


It’s amazing how different the varieties are in daffodils.

And I finally started working on the craft room after running around with Mom a bit this week. Monday we loaded the car and worked on the craft room a bit. Tuesday we drove to the Consignment Shop and dropped off items and pick up money. Thursday we went to shop RVs and see what is out there for David and Laura. It was fun to see all the fun RVs out there..

Fun stuff.
Then today I worked on the craft room and organized some more.




Making progress!!!


We won’t talk about what is under the desk. Ha!!


And Angela’s bed is cleaning up more as well.

And with that we shall move into the health update. I’m 2 weeks and three days past surgery. Healing right up - shockingly so. The pooping is getting more and more regular. Working more towards daytime pooping instead of the middle of the night. Yay!!

The Stoma hole. Well here is your warning.
*** don’t look***






Scroll on if you’re squeamish.





You have been warned.



So really you can’t see the details on the 7th however the hole was down to the muscle. By the 18th scabs are starting to form and I moved from gauze to bandaids to avoid sticking (nice belly button scar). Today (23rd) the scabs are well formed and looking really good. Healing up nicely!!

Now to get control on the pooping a bit more and ill be set!!

Nights and days mixed up....

The saga of having meh nights and days mixed up continues.

I slept in really late this morning after finally going back to sleep after going potty for hours from 2am to 6am... then went BACK to sleep napping in the late afternoon.  Zzzzzzzz. That’s something new. I don’t typically nap, and I’m a huge proponent for napping but with not working I’m able to sleep in and don’t tend to nap.

Hoping my body will adjust within the next week or so. I hear there is a magical window of time where things iron out....

BUT I did complete two things this weekend with kids home. Went through the cup cabinet and the Tupperware cabinet to get rid of stuff not used in 5 years. Bundled up for a Tuesday run to the Consigment Shop!  With stuff from the craft room and these things my drop off should be pretty good.

So, making some headway on getting stuff cleaned out!
Next up is back into the craft room with my new Iris boxes to get paper put away and finish that mess up!!

updates on a poopy week

Sunday’s thoughts were (found this in draft today) 

Well, I keep wondering “is this it?”  I know, weird. I wondered and worried so much. I have lots of odd cramping and pains but the doctors didn’t pay any attention to them in hospital, so I’m assuming it’s just body adjustments. (Yeah, this was the colon firing up to FULL production, heaven help me!)

Thursday Day 1 was rough, but doable. A few accidents, but go be expected. Night one was horrible with lots of wake ups and accidents. But being prepared was good and saved my sanity. 

Friday Day 2 was OK just a few times with mad dashes and limited accidents. Night two was accident free however gassy which is weirdly painful in the rectum, not the body. 

Saturday Day 3 I took a shower with the gaping hole in my gut. That’s a weird thing. Having a hole in your body that isn’t stitched and it open and weeping. I put gauze on it daily and tape it. Well, Butch tapes it. 

I was just feeling “off” that whole weekend. 

I had more accidents at night...more up and down at night...more clenching in the day to no avail. I feel a bit demoralized at this point. 

Tuesday’s doctors appointment - they put me on gapapenten spelling optional. It’s for the neuropathy in my feet that is moving up my legs. Maybe it’s a case of me not noticing it earlier, who knows. They said it was weird. It should not progress at this stage. Ok, so explain the two toes on the right foot now being numb. Which, by the way as of Wednesday they are better. I started the prescription Saturday.  Who knows. The doc wants to think it’s spinal related. I will leave it up to them to decide. They’re looking at vitamins levels, everything. We shall see. I’m ambivalent at this point. (Too worried about pooping in a diaper for life)

So..this is Day 7 (Wednesday) and here’s the skinny....

The hole in my stomach puts me off...which is weird because I’m usually ok with this sort of stuff...the gaping hole? Not so much...it’s very strange for me to not find this fascinating but gross. 

Then there’s the bowels...the other shoe dropped...it wasn’t as easy as first assumed. The nights are horrible lately. I sleep right through my warning signs. Then wake you a mess at 3am. Last night I walked around, cleaned up, sat down, laid down, moved around in an attempt to empty my bowels before going back to bed. An hour later, I lay down, get the urge, get up, lay down, get up, lay down. You get the gist...I finally lay down...no urges. Drop off to sleep only to wake to another mess at 8am...ugh. This has been the last few nights... the silver lining is in sleeping really well and well rested. I’m realistic and wear depends to bed nightly. I’m optimistic, however, not stupid. 

I need to find a way to get my gut to shut down at night. I’m OK with purges during the day and even the occasional “whoops” as well...but night time should be more sleep, less worry about pooping myself. 

So, aside from that, I’m not a shut in. I did go to the movies with Mom Tuesday after a doctors appointment. We saw Peter Rabbit. Cute movie. I have gone to the grocery store.  Ah, thrilling exciting life I lead, eh?  Regretfully anything more and I do need to know where the bathrooms are ;)

I’m trying to keep my chin up, but there is just something about this portion of the treatment for cancer that’s just wrong. Yeah, I’m cancer free but on drugs for neuropathy in my feet - which seems to be working, thank you! And I poop in diapers. Yeah, thrilled that this is “all over now” as everyone keeps telling me. I do try to be nice and not scream at them. It’s not over... it’s just in the not so glamorous stage of pooping paints, blood tests quarterly, CTs every six months and a colonoscopy in a year (silver lining it’s 1 then 3 then 5 - could have been annually).  So yeah...it’s “over”.... for today....

Body function update

I peed today. Yay!! As some of you know there were issues the last two surgeries with a very sleepy bladder. They backed off the long parting narcotics (drat) and that seemed to help. The pulled the catheter at 8 and we had action at 10. Yay me!! Now to get the rest flowing. Expecting some colon spasms which indicate it’s waking up. Just no “deposits” yet.

How it’s gone so far...Photo warning...

If you don’t like open wound don’t scroll to the bottom! The top part is good ;). I’ll put another warning right before

So the drive down was entertaining. I drive down as I won’t drive back.

So I had ONE job on the way to Mayo Clinic. Turn on I-10. Literally What ONE turn. Yep. I missed it. And it’s HUGE!! Good lord. Then to add insult to injury? Part of the freeway is totally shut down. Stop and go traffic and a big detour. Took an extra hour to get here - good thing we came the night prior or I would have missed my show time tomorrow!! First hibacleanse shower down. Time for bed!!! 1 am geeze. At least show time is 11am. I can sleep in!!!

Even that was a change in plans. Butch’s phone rang at 7am. Weird. My ringer was off. Whoops

He answers it. It’s Mayo. Cancellation (by someone else) and mad dashed to the hospital. Ok so my family doesn’t do mad dashes anywhere. Maybe a mad amble.
I’m got up and ready quickly ....

Bad thing is we have had 6 hours or less of sleep. Good news is I didn’t have time to get rattled. Yeah right.

I was so calm on the last few surgeries. This one? Not so much.

So. Headed in early to get this show on the road.

When I got here they were super ready for me. I was shoved into a room
In back before Butch even made it back into the hospital. He had dropped me at the door to expedite checkin ;)
They were sweet and held me off 5 minutes so Butch could say bye and take my phone :)


Happy. Not!!


Ok happy face for the world.


My view :)



Final farewell to Audrey and the bag!!

Then off to surgery. I was awake. lol the way into the surgical room AND awake for the mask. That was new for me. That mask was shoved on tight and didn’t have a huge positive air flow, that’s for sure. But out like s light after three or four good breaths. Zzzzz

Recovery was good. Pain was really there. They took off the long acting narcotics to see if that would get me bladder activity quicker. We shall see. I have the catheter removed at 24 hrs from surgery.


Last night in the room. Took two walks. Used the elbow walker. That’s interesting didn’t use it after my last surgery. Was probably suppose to. Oh well. First walk was short. Second walk was longer. Hummmm thinking I may have had three walks. Remember three different cut through. Short, medium and long. Who knows. I was walking - need to get the bowels working.

I will walk this morning once they get my catheter and IV unhooked. It will make walking MUCH easier as I can then walk solo. So. After breakfast sometime I’ll take 2 rounds. That 1/2 mile I think they say. 4 rounds is a mile. Per the nurses last time.







******* photo warning******
They pulled my packing and I gut to see the opening :)
***if you don’t want to see quit now***


















It’s bigger than my belly button right now!!! I was expecting the smaller gauze packing I had seen on TV shows where it’s more solid. Had I been quicker I could have gotten a shot of him pulling it out. Wasn’t that quick! Not a lot of pain removing it. It was more painful for the drain removals.

Sweet. Now I just shower as usual I don’t worry about the hole. If can get wet and soapy. I then just pat it dry and and put a new gauze pad over it until it heals over.

I read articles on it. This is shockingly the least infection causing solution to the wound closer. They get more infections closing off the wound fully.

Cancellations (not mine)

Cancellations and mad dashed to the hospital. Ok so my family doesn’t do mad dashes anywhere. Maybe a mad amble.
I’m up and ready....

Got a call at 7:00 of a cancellation with the hospital. We’re on our way in now to get in early.

Bad thing is we have had 6 hours or less of sleep. Good news is I don’t have time to get rattled now ;). Yeah right.

I was so calm on the last few surgeries. This one? Not so much.

So. Headed in early to get this show on the road.

Preparations

Items picked out for the hospital - check
Two jammies
Slippers
Supplies

Movies loaded to phone and iPad - check

What am I forgetting?

I’m starving already. No food after lunch today. Grumble grumble grumble. Clear liquids. I should go get some Italian ice. Those are allowed until midnight :) some Chinese soup broth too. Yeah. I’m hungry!!!

I don’t want to do another surgery. Am I being a wimp? I’m just over this already. Aren’t we done yet?? I don’t hurt enough to WANT this one.

Gallbladder? Heck yeah, get it OUT
Cancer? Heck yeah get it out.

This surgery? Is this worth it??? Sigh. Wimp....

Bidets and thought on reversal.

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!

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!!

Bag decorating

Bag decorating to say “bye!!”



1st attempt I drew Audrey too large!


2nd attempt there is. Message to the docs!

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!!!

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.