Radio active (aka PET scan)

Today was my PET scan day…

They bring in the led lined box. 

Closeup…

Led lined syringe to boot. Fun times, fun times. 

I will find out the results in July. I’m honestly not too worried about this one. I read the results. It was OK. There were a few blips but I’m not sure it’s all good :)

I’ll confirm in July. 

The gifts that keep on giving

I had a PET scan last week. 

I saw my oncologist this week. 

Things that didn't light up and can be celebrated: lung nodes, fatty liver, right pelvis. 

Things that did light up that need watching: left pelvis. Sigh. We win some we lose some. 

They offered me the signatera test (blood) and I asked what would change if it's positive? Negative? 

Nothing would change. So I skipped it for now. They will do a CT in 3 months as they know where to look now. And we wait. Again. Too small for biopsy at this point and in a difficult spot (peritoneum). I worry as it's cancer adjacent location. Nothing to be done at this point. 

Then I start looking at the odds of things being false positive and really wigging out. Lord save me from Dr google!!

Ultrasounds and updates

The ultrasound was… interesting… and painful.  I know that sounds weird.  But it was, of course, my right lobe.  Guess where your right lobe is located…. Under your ribs.  Yeah, that was fun.  NOT.  BUT it’s over and there was nothing of note to be said about it other than I have a fatty liver and it’s hard to see even with contrast if there are issues.  So, until there is a HUGE issue that can be seen on a CT I’m good to go.  That’s really comforting, eh?  Sigh.  I feel like I’m falling apart from the inside out.

 

Oh, and contrast for ultrasounds is bubbles… so I’m fluffy and bubbly now! Bwahahaha!  Hey, if you can’t laugh at yourself who can, right?

 

What I did find out from the scans that I didn’t put two and two together on until just recently is that the raised cortisol in my blood may just have a reason.  I know they mentioned this to me way back when I was in Vegas that there was this issue with cortisol levels being higher than normal… and then I put it together with the “Minor nodular hyperplasia of the left adrenal gland” this may explain a bit more in my life… but really not… I think it’s just that I love food – ha!  Cushing’s Syndrome is something to look up and see if you think what I think… that this is a minor play in my life and my long term health – possibly.  BUT this would take an endocrinologist to confirm and honestly it’s not worth looking that up and fighting the language barrier to figure out if this is the case because the best solution is to remove that nodular hyperplasia on the adrenal gland.  Nope, not up for surgery/radiation/medications (or modified diet – hahaha!) any time soon, thanks.  I will just take it as a “this is the reason you are fat and have a fat hump on your back 😄”

 

I don’t think it will kill me anytime soon if it hasn’t already.

 

And so, the bottom line my lovelies is I’m fine.  Just fine.

Let’s take a closer look at that and monitor it...

Today was my follow up to my CT scan and now only chest X-ray every 6 months (German theory of less radiation) I think not as my chest was clearly visible in that CT..but I digress.

Last time (2yr) there was a swollen lymph node near my anastomosis.  Ok. We will “watch it” was the mode. I work myself into a mild internal freak out prior to scans.

Scan was Wednesday. I ask the radiologist after the scan about said node (I do like that they consult with you after AND hand you a disc with your CT) he said it’s there but no change...ok. I’ll take that as a “no worries”

Fast forward to today. Oncologist says there is a place of concern on my liver. CT with contrast next week. Just in case. This is going to be like my boobs. 10 years of mammograms every 6 months. I thought they would get me, but nooooooo it had to get me in the a$$ instead....I’m sorta over “let’s keep an eye on that”....what are the odds of it really being anything??  Really??

I vote I play ostrich and avoid doctors for a while....meh, who am I kidding?  I’ll go. Not happily, but I’ll go.

Updates on doctors visits

2 year scans done. Doctors results in. I had nodules in my lungs on the last scan and honestly they were freaking me out - I tried NOT to dwell on them and succeeded until the week of my scans. I had my doubts about them as they stated “can not rule out metastasis”. Great. This round of scans they indicated there was no issue with lungs however (why is there always a however?) these IS a lymph node in my groin (i should say rectum (or what’s left of it)). So although I thought I would be on yearly scans at this juncture I’m still on a 6 month scan schedule. Good news. Yay?  Yeah I can’t bring myself to be super excited about “we need to watch that area” comment but it’s not horrible news. Meh. I just need to see a castle and I’ll get over it. Ha!!

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!!