Optifast (?) week 12 and chemo update

Ok I'm going to have to drop the Optifast title because I'm a slacker and have not been doing Optifast lately. I have tried to do two to three of the shakes for nutrition but honestly food and I are no longer having a relationship. We've broken up. It's just not a priority or a draw. I get fuller faster and eat a lot less now. It's weird.

I'm not losing like I was with Optifast BUT I'm reporting every week and I probably shouldn't. If I weigh every day I'm surprised how my weight fluctuates - up to three pounds at a time. I went to the cancer clinic and it was three pounds more than what I weighed at home the day prior.

So. I'm close to 50 lbs down still....the right downward trend.

I'm tracking my food on My Fitness Pal and thinking of getting the premium to show better suggestions on what I need to add to be more healthy and balanced.

But here it is as if today:








That big bump is the lovely hernia and the bag. Fingers are resting around the hernia. Sigh. This will get fixed in 4 or so months.

Three months of chemo and one month healing time then surgery to reverse. So thinking if it's like my first surgery it would be a 6 week wait or so to get in.

And so I march on!

Chemo. I had my education on Friday (15th) they told me pretty much told me what I know already about from my groups and having three months to research and talk with folks. Nothing shocking.

Well I take that back they said I would START chemo the very next day. Yeah, you read that right. I will start chemo on the 20th bright and early. Ummmmm. Ok. AND they said when I get my port put in I should tell them to leave the needle in.

Uhm say what??? Yeah, leave the needle in that they will be using to flush the line the first time. Why you ask (cause I know I did)?? Well, I will be sore and stiff and they said rather the poking me again I should have them leave it in and avoid the stick. Smart move!! Ok need to remember that.

And so the journey will begin.

While I'm here gotta say a few things. I am not gonna sugar coating things here. I had the nurse ask me Friday when I explained I was still supposed to be on the Optifast diet and have very liquid output at most time. She asked me why (not the first nurse to ask this). What on earth do you want me to say? I've gotten to the point of saying "because I'm fat". I mean duh. You can see that. Sigh.

Also someone said "oh it must be nice to be back to normal". Hum. Yeah. I'm so far from normal. I always say "I'm fine" which all things considered, I AM fine.

I could be worse. But normal? Uh, nope. I poop myself daily even though I have a stoma. I have a poop bag in the front but what they (docs) don't tell you is some folks have mucus pass through the nether region as well.

As it is I'm lucky in that my colon work super well. But I'm unlucky that my colon works super well and I'm the mucus queen. To the point of "pooping" myself. I wear a pad daily and see diapers in my future. No really. I'm going to have to retrain my bowels. If I'm lucky it will go quickly and things will solidify and I'll get control easily. Either way there will be pads in my future for some time as I have Read that accidents WILL happen.. for a while.

So when I say "fine" it's just that I know you don't wanna know. Not really. It's gonna be a long road back and I may never get there and, that's OK too. Not ideal, but it's fine. I'll deal with it. I may whine, but hopefully I'll just laugh about it and move on. The reality is I'm shopping diapers at Sams and happy to announce they have what i will need if things don't go as well as I hope ;)

But yeah, I'm fine.

Oncology

Port placement date set: 19 Sept
Education date set for the 21st.

Reality is sinking in.

Feeling Ok about it.... just getting real.

One would think surgery to remove and rearrange your innards as outtards would be more real than a little drug therapy... but the realization that I am going to voluntarily poison myself for a few months is a bit daunting.

Ballooing and gas output - yep, it's a poop post

last night was the first time I have ever experienced a SUPER full bag that was ballooned.
It doesn't sound like a big deal until you reach down in the dark and feel this HUGE ballooned bag and think "please don't loose seal, pop, or otherwise unleash poop onto the bed!"




Really a scary feeling to be wandering through your dark room praying to not run into anything in hopes of making it to the toilet in time to release the Kracken!

It was super full of not only gas, but poop.  yeah..slosh, slosh, slosh.  Toddle off to the potty to empty this.  So.. that was NOT fun to wake up to in the middle of the night.  SO glad it didn't pop, spring a leak at the flange of anything else.  Fun times, these bags!

Audrey is still sounding off daily.  the only thing different last night from any other night was sour cream.  Hum... guess THAT is off the table from now on, eh?

I have to say, that it's kinda fun to be sitting in the living room when she sounds off and I just get to say "not me, it's Audrey sounding off " - but the up side to this is there is no stink when Audrey sounds off during the day

Oncologist discussion and decisions

So. I'm super lucky in that I am stage 2. I'm super lucky in that I have no lymph nodes involved. I'm super lucky in that there wasn't cross over to other areas.

What isn't lucky in that I don't have a definitive answer on if Chemo is warranted.

It's a crap shoot if it's worth it. There are no studies to tell me that 100% this IS the way to go. BUT on the flip side of that there is no studies showing 100% this isn't the way to go.

Soooo it's a judgement call. Basically the answer is "do it if you will regret having NOT done it if cancer comes back".

So basically it's up to me. That's a scary decision to make. 80% of the time i lean towards napalming this stuff. The other 20% of the time I want to just hold off for the three months and get the reversal done and walk away.

Yeah the 80% is winning.

Even the doc said with my young age (it's NICE to hear that all the time) he would lean towards chemo just to be sure.

So. I signed on for chemo. He did say I had time to change my mind after. Even if we only did a few sessions and things weren't going well and I wasn't tolerating things well, I could pull the plug on it all and walk away.

And so the adventure continues. Dr Sumrall will start the process to get me going on Chemo and we begin in a few weeks.

Mayo follow-up

Warning if you are grossed out do NOT scroll to the bottom!!

Liz and I drove to Mayo after she got done with work. Oh and speaking of work *I* went back to work for the first time Tuesday as well. Wow. I forgot how wearing it can be to use your brain. I was so worn that by noon I gave up and took a nap!! Really. The first nap since I had surgery. I was beat!!

I got up shortly before Liz got home so when she pulled in we packed and headed to Mayo for my appointments on Wednesday. Yay us!

We got into town around 7:30 and stopped for dinner at Millers Ale house. Liz had a steak. I had a bite of her steak along with baked potato and some green beans.

We then went out hotel and basically collapsed we were both so stinkin tired!!




Out view off our balcony.


Look In the far left. You CAN see the beach.... just a little ;)



I laughed. The hotel is a Hilton but the cups are Hampton. Funny!!

Ok the next picture will be graphic so scroll carefully!!

Funny story about our stoma Nurse.
Her name is Nurse Doctor. No really that is her name. AND she is going for her doctorate in nursing so she will become Doctor Nurse Doctor in the near future!!

I went to my fist appointment at 10:30 with the stoma nurse. As I had so many problems the week prior I was afraid to go. She said it looked really good. And to my little Audrey's defense she was looking MUCH less mad angry and swollen.

The skin had healed around the area and there was only one bad area directly around the stoma that was not looking great.

So here she is. Looking a bit more healthy.



That spot in the lower abdomen is glue residue. It's not anything horrible.

The surgical follow up with Nurse Christy and she crashed the stoma party and checked everything then. I got an all clear and some discussion about my diet had her talking to Tina the dietitian and I have a modified diet now!! Yay!!!

So it's now Week 10 and four days down 45lbs. I am happily moved to 3 shakes a day and one meal under 500 calories!! Whooohooo food without feeling like I'm cheating all the time!! Oh and a few high protein snacks during the day to get my output more solid and less like diarrhea. I had almost been doing this anyway since surgery... I couldn't take the liquid bags!! AND I have been told that my foamy output (gross eh?) could be a sign that I'm becoming lactose intolerant as well (common after surgery?).

So great news on all levels.

And with that we fought the traffic going north and now escaping Irma. Two gas stations with NO gas and two too crowded to get into and finally stuck with station 5 and they only had premium at $3.75 a gallon. Silly me didn't fill up. Figured I was going far enough to get gas. Nope. More closed stations between Jacksonville and Waycross. Wow. On the plus side I came home with 3/4 tank so I'm just going to stay home!!

Stoma naming

It's official my stoma is named Audrey II (Twoey for short) because she was always talking that first week and still talking every once on a while still (Feed me Seymour).


Liz pointed out she came into existence about the time of the eclipse as well so her name is truly fitting.

Tummy updates

Belly update.



Day after surgery



Today.
A lost less swollen. Still chunky.
Yellow bruises. Healing.
Just took off the BIG bulky bandaid off the drain site. Not sure why it took me so long to do that. I guess because I have been showering every other day as I don't DO anything.

The drain was removed last Wednesday. The first few drain bandage changes there was some drainage. This last time nothing. Yay. So it graduated to a bandaid. Probably doesn't need that really bug because it's under clothing we shall keep one in for a bit.

Speaking of the drain you haven't met.


Meet
The drain hole in healing. Nope. No steri-strip no closure just pull then bandage. Uhm, OK. If it works, then do it I guess. (Yes, that's a bruise above and below it)


THIS is part of the stitch that was poking out at the narrow end of the injury. Just a smidge was sticking out when I pulled. This BIG hunk slid out easily. Yikes. Oh well. It's out now!!


This is what I feel about it all anymore.
Bwahahaha.

Best illustration for ileostomy

Week 10

Warning gross stoma picture at the bottom!!!

So the sad reality is I don't wear slimming clothing.







As of today I am down 46.5 lbs. can you tell? Nope, me either.

The sad fact of the matter is I am not 100% in my diet either and I don't care.

I'm doing about 3 of 4 shakes and a meal. Not a HUGE meal or a super fatty meal but a meal. Last night with a baked sweet potato and about a 1/2 cup of chicken, broccoli and orzo pasta meal that Liz made. It was good. Did I have all four shakes? Nope. I don't even think I had four. I tossed my coffee 1/2 way through. I just could NOT do it. I had a biscuit with jelly. You would think I'm eating 1/2 a chicken with Butch's response. Honestly. Who the hell cares if I'm skinny!! Just him and the doctor and I think he cares more about it than the freaking doctor. Gimme a break!! Why not just love me for me??? Arge!!!

Yeah. Hitting another wall today. My stoma or rather the surrounding skin is PISSED. Not happy. Bleeding and miserable. 😭😭😭😭

And honest so am I.



Someone on my stoma group said it looks like a reaction to the flange. OK I changed that today. Going with coloplast plastic looking flange for a few days. Next change is next Tuesday with the home health care nurse.

OR I may wait it out to Wednesday for the wound nurse at Mayo to look at. Who knows. That may be a bit long considering how irritated that area is.

Poor pitiful me, hu?? 😭😳

Two weeks to the day from surgery

Thursday I ran away with Liz to the Movies. We saw The Hitman's Bodyguard. It was decent. Entertaining and made me laugh a few times.


I did bring a blanket to the theatre. I was glad as was Liz as she was snuggling up about half way through the movie 😄 I shared the blanket with her. She was happy!!

Friday. Shower day. I decided to try the whole "use press and seal" to keep bags dry.


Hum. It didn't work!!
The Orange tape is waterproof tape. And I guess I got some press and seal to where the tape wasn't on my skin. Sigh. I had a WET bandage from my drain area AND a damp bag as well.

Oh well the bandage on the drain area was changed and the bag dries quickly enough. It was worth a shot AND saved the wafer on the bag from getting damp, so good enough.

And with that I headed out to mail Noah his Donald Duck back as well as a surprise. Then headed to moms house to see her and Dad. Poor Dad is still sick from his pneumonia bout this week. He's really tired and weak but doing OK. Poor dad and poor mom as she's bored to tears. 😄

Then home to relax and rest up.

More questions answered an update!!

My hernia is a parastomal hernia. It's at the stoma sight. It's a bump around the whole stoma. Kinda like a huge punk knot at the stoma sight. They happen because they don't cut the muscles they just shove them apart and put the intestines through the hole. Sounds like a recipe for disaster as there are a lot of guts behind that there wall!! So, I'll have to have THAT repaired too.



Looking straight down on that side. Really punked out a bit more noticeable.


Squared up to the sink. It's just one side. It's not HORRIBLE and not huge. I saw one on the sites the other day that literally looked like a breast!! Yikes!!

Are you counting the future surgeries? Sigh. I am. I have a reversal and a hernia repair (if I'm lucky they can do those both at the same time) AND I have gallstones that will have to be dealt with in time!!

The binder is to support the stoma area and the hernia area. So it doesn't get bigger. I have a full belly one from the hospital but they cut a hole for the stoma area as it has no nerve endings and can't feel if it's getting irritated or killed by pressure. So we avoid pressure. It DID have the added bonus of keeping the drain tubes held in place well :)

My burbling stoma is on my right side. I say that as it just burped loudly and wettly. Ha! It's funny at times but I can see how folks would be disconcerted by it. Ha! They sell "mufflers" which are layers of soft material to muffle the sounds that can emit from the body. The plus? ZERO smell. Hahaha

If you think apple coring sounded bad, the hospital report on how HARD it was to disconnect my bowels from around my spleen area sounded horrible. Apparently I'm very well attached. Well or was!

As of today I am tube free all the way!! I had my drain pulled today. Yay me!!!! I so excited !!!


Ok so this is the diary of sorts of output from the drain...








Started out pretty high the. You see it dwindling down to NOTHING in the end! It's been a trial in patience!!

So THIS is the tube that was IN me. From tip to stitch area. Compare to my huge hand!! Not good enough to know HOW long that is? Me either, so I measured it!





19" of tubing in my groin, rectal area. Yeah. That's an image isn't it? Yeah, it was run through my body and back to the area where they removed all of the tumor and surrounding tissues. Ewh, hu? Well it had to be done! Glad they know to do this now!! Either way it did the trick and helped. Me heal. NOT sad to see it go however!! The first tug was met with a "holy mother" comment! The 2nd pull wasn't nearly as painful. Whew! It's OUT!!!


The patch - and a neighborhood residual healing spot from surgery.



The bathroom trash looks like medical waste area between left over stuff that needed to be chucked from the catheter time as well.

I DID finally pick up wet wipes and they were great for the bag change today as well.

Today was a good example of "listen to your body". I have a feeling things weren't right on the appliance change from Monday.

Well it wasn't. My stoma had changed shapes AND I tried a new approach with paste rather than the ring.

Well, apparently that didn't work well and there were quite a few spots that had contact with fecal matter. Lordie.

So. Back to the ring and hoping the irritation doesn't get things stirred up. Sigh. Steep learning curve but NOW I know what leaking feels like. And I only let it "go" for a day or so!! Hopefully

Thoughts on pain levels

So, I'm overall happy with the recovery process. Could have been SO much worse!

I was thinking it would be worse than my c-section, natural birth and or hysterectomy. It wasn't worse than any of those. It was different for sure, but the pain was on par with the c-section. But not as quite as long lasting on the pain scale and sitting after was similar to the hysterectomy. Easy to move around. But the poke holes were painful.

The only hiccup was the bladder. As I said, could have been worse. I had asked a few how it compared. Most said it was worse than c-section.

Meh. I think c-sections slightly worse as it's open and lots of flab to deal with after the baby is gone. Then again there's a lot of flab from life at this point 😜

Adventures of a bored patient.

Today I'm going out. What???? Yes, I'm going OUT. I'm not asking. I'm just going.


I chose a flowing shirt that is a little longer than the rest. And capris with pockets.


Can't see a thing. I do have my binding on for the starting hernia.


The only thing that can be seen is the tip of my bag if I raise my arm.... simple
Fix, don't raise my arm! 😄


And we're off!!!

Ok I didn't make it too long. I went in shopped the dollar spot as it was 70% off. Had fun there then went straight to the baby area for a belly band. But changed my mind as they were $25 and really I have two binders at the house. Do I need another? Nawh. I will wait and if the nurse thinks I need a hernia belt we shall get it then as it would be covered by insurance.

So two cases of wet wipes. Two cases?? Well I figure I will use them between stoma care and bowel training in a few months I'm sure I'll work my way through them. That and I use them in my car all the time anyway.


So here is a lovely road who was hopping around the garage door. I helped him and nudged him towards the grass 😄

Then I pooped out and went in to watch Game of Thrones. I told Liz I would watch it and catch up with it. I've finally finished season 1

I also heard from home health. I will be getting my dram out tomorrow!!! Whooooohooooooo!!

Potty update

Well after the catheter was pulled yesterday I didn't want to jinx it by talking about it this time.

So they pulled it at 1:30. I was peeing about one time an hour. Not a LOT but well more than last time AND more importantly is that I was comfortable. I want thinking constantly that I NEEDED to pee but couldn't. So I was OK being left to my own devices. I didn't call home health in. I didn't have them place the catheter again.

I woke up two times I. The night to pee. I can live with that while we're adjusting and getting things back in line. Ah. Relief. No more catheter!!!

Yay!!!

Questions answered

Do you have to sleep flat on your back? In a recliner ? Twenty-two pillows for support in all the right places?

Sleeping normally in my bed. Rolling from side to side. A bit more difficult with the catheter as I had to try to keep it unkinked at the top where it's softer rubber. The drain has been pulled a few times thus there is one stitch that was fully pulled out (youch!!) and it's hanging on by one very irritated stitch. But I just grab that part of my belly and roll. Sometimes the tube is twisted and get really ouchie but it generally calms.
😄

My poop pillow HAS been used to support the drain on and off throughout the journey as well




The stoma is placed to handle my movement and in a good spot to roll from side to side. No tummy sleeping for a while I'm afraid as I'm not supposed to keep pressures on the stoma as it's sensitive and has no nerve endings to tell me if it's getting too much pressure. So for now it s back and sides. Which I'm good with.

I'm the hospital I was sleeping reclined with feet up however knowing I was going to a flat bed I started side sleeping on a flat bed the last night. It WAS nice to raise the head to get out however not necessary once I got out as I would just roll to a seated position. I'm still very movable until my stitch catches. Then I couldn't sit OR put the recliner down or anything. It was laughable that night. I couldn't move!! Poor stitch!! Poor me. Butch got some pillows shoved behind me and popped the recliner down and I eventually got past that one. Lesson learned - no more recliner until the stitch is gone!! 😜

The poop pillow has been used to support the drain on and off throughout the journey as well.

I sit in the love seat sideways so I'm on one side of my hip taking weight off my coccyx. Why? Because it's a bit achy. Not horribly so, but achy none the less. Wonder why - ha!

Cored like a apple and stapled back together. Yeah. It's not happy. The report actually states the stapler was introduced through the anus to put the rectum together with the colon. Poor body. Poor anus!! My poor body was just pummeled. BUT even not being young I'm ever so grateful for Inheriting Dads high pain threshold because every time I say where I am with recovery everyone looks at me like "wow". So I'm doing good and a a very tough old broad!!

Adventures of a sleepy bladder

Well. I had the catheter pulled again today.

I was hopeful but really NOT wanting to jinx it.

Yeah. The good news is that I am peeing. Not great copious amounts of pee but about every hour or so I'm peeing just a little. Enough to color the bowl yellow a little. Probably not enough but I'm OK with going every few hours or less.

I guess this is just what success will look like today. Nothing grand and not totally normal but enough to call this a success.

Baby steps, baby steps. I guess I'm too old to go through such trauma and just bounce right back up again, eh? Guess I'll tolerate a drowsy bladder for this evening and give it every opportunity to empty fully. I will NOT be calling home health back tonight if I can possibly avoid it!!!

Could be that my body is "clenchie" from pain from this damn drain. Sometimes when I sit the stitches will pull and it's all I can do to sputter out curses. Sigh.

Yeah I'm over this stuff. Really tired of it all. Let me pee like a normal person and sit without fear of pulling a stitch and I'll be a lot more chipper 😖

Optifast week 9 and a few days

Ok back on the shakes. I'm down by 43 or 44 lbs. I weighed myself prior to my shower this morning. Then I thought of pictures and kind of chucked. So here you go!!



Ok it's sad that even with swelling from surgery I'm smaller than in the beginning. Or is that good? Who knows.



Here's the reality of what's under that dress 😜. Hopefully I'll get TWO of those bags removed today!!!!

I mostly weighed myself to know how the drain removal goes for me. I was told if I'm retaining more than I should my weight will give it away. So. We weighed.

I was surprised because I weighed 37lbs down when I went into surgery. I then weighed in 33lbs down while in recovery. So basically swelling worth 4 lbs. now I'm 43lbs down as of today. And that's with eating real food in the hospital. Not much, but I was eating real food.

Lately I'm having one real food meal a day (eggs or low fiber veggies) due to a screw up in not picking up my meal replacement shakes. Oh well. I kind of like having a bit of real food. 😄

Saturday excitement

Bladder training is "interesting" and irritating in the reputation. One more day to convince my body of its duty to me.

Closer to drain removal as well. Have to be below 70ml output for two days. I think we'll be there by Monday if all goes well.

Watching movies and shows today just laying low.

Monday starts with some motivation in getting ostomy supplies started. Not looking forward to figuring this out!

Wednesday, Thursday, Friday

Well. Wednesday was sad in that we had to day goodbye to Robert, Janet, Tiffany and Noah. I'm so sad I wasn't up to playing with him. He was a cutie.

Me? I was a bit worn out in general. Just feeling down. I'm not my normal self and that bugs me. I want to be me. I want to enjoy my time at home. I see stuff that I want done. Weeding, watering etc and I want to do it all. Sigh.

Home health also came by to do my initial assessment. No biggie. Just checking stitches and the area. So. That was done

Thursday home health care came back and watched me change my bag. I did great. Passed the test and put it on correctly. Yay me. They also pulled my catheter @ 11am in hopes my bladder was now awake. And I waited and waited and waited. And I dribbled from time to time. But no major urination. Sigh. By 6pm I was having the dang catheter put BACK in. 😭

Booooo. But I was told how to do bladder training. I am to clamp the catheter and release it every hour. Get my bladder and mind trained.

AND best news was a call from Dr Landmann. Over 70 lymph nodes and no cancer in the nodes!! Yay me!!

They may still do chemo as my tumor had a mucosal quality to it. Personally with a precancerous polyp in there already I feel it would be a good idea to cover all bases.

And today is Friday. Today was bladder training. As will be this weekend as well. Clamp/release/repeat.

The great escape

After I was released on Monday we went to the hotel to sleep before heading home the next day.

We went a new way home through downtown. Took a few wrong turns jostled the body a bit. Got back on track. Made it through.












Pretty cloudy. By this time we were 1/2 way home and I was fully reclined.








My chauffeur for the drive.

We had a nice visit with everyone and Liz cams home and lightened the mood rough housing with Noah. Such a cutie he is!!




I felt bad to be so out of it but the ride really put pressure on that catheter and my tail bone. Yeah didn't have pain there until getting home 😒 oh well, I can recline in bed and relax 😜


Nice bruise from the deep IV they did after I was out. Two vampire punch holes at the wrist. Yikes!

Other than that just sore and stiff and out of sorts because I'm home but don't feel like me at this point because I can't do what I normally would do.