GOING HOME AFTER ILEOSTOMY REVERSAL

Monday evening, Sept 21, 2015 I got my chest port taken out.  I was pleased when they said they'd just push my bed down to the OR for it since I was so nice and warm and snuggly, but I was nervous that I might have another bout of needing to run to the toilet.  Then I got to the OR and they said I had to move over to the OR table!  That flat, very hard table.  It was so cold in the operating room but they quickly covered me in those warmed up blankets.

They had me lie down with my head on a round squishy gel pad that was pretty darn cold, and I said, "Wow, you guys are a bunch of meanies.  Are you afraid my head's going to sweat or something?" Dr. Strobos got my sense of humor and he laughed.  He took the cold gel ring and said he'd warm it up.  He was squishing his hands all over it.  I don't remember much else, other than being afraid that the cold room was going to make me have to "go".  Luckily I made it through with no accidents!

Tuesday morning, Sept 22, 2015—Here's what I said on my Facebook page:  I'm home! I got home at 11 am today. It's nice to be home, nice to be out the hospital. It'll take at least a couple weeks for my colon to remember how to work again, oh joy. One of my CNAs was a 25-year-old man. I told him, "This isn't something a woman wants to say to a cute young guy, but do you mind getting me some more diapers?" He said, "You mean the pull-ups?" I said, "You know why I need them. Let's face it, they're diapers." He said, "It's ok, you can call them pull-ups. You're a big kid now."  :) That cracked me up.

Thank God for those pull-ups.  Just as the nurse was about to wheel me out of my room in the wheel chair I had to literally jump out and run to the bathroom one more time.  I literally just barely made it.  That was nerve-wracking!

DAY 5 AFTER ILEOSTOMY REVERSAL

So it was Sunday, day five since being admitted, that things finally started working down there.  That morning I had planned out my day:  I would go do my laps around the surgical recovery unit and then come back and take a shower.  I hadn't showered since the morning of surgery and I wanted one so badly.  When I told her I wanted to take a shower that morning, my CNA brought me a new gown, new slip-proof socks, shampoo and conditioner, a washcloth, and several towels.  I had brought a bar of Irish Spring, my favorite soap, with me.

She got me unhooked from my IV and said to call if I needed help.  I took such a long hot shower that she came to check on me twice to make sure I was still ok.  I was definitely ok.  That shower felt so good.  Afterwards I did my hair with my new leave-in conditioner that smells so good.  I rubbed Eucalyptus Tea aromatherapy cream all over me, got dressed in my clean gown and socks and got snuggly back in bed.  I felt so good that I didn't even feel like doing any more laps that day.

Despite me not even having passed gas yet, they said I could be on full liquids, so I had the cream of potato soup, which was pureed and really thin.  I was so hungry that it seemed like it was the yummiest stuff I had ever tasted. I'm glad they finally saw reason.  I kept saying that nothing will be coming out if nothing's going in!  And it worked.  Out of all the tummy rumblings I'd had up until that point, I knew this one was the one I'd been waiting for.

They'd kept saying I'd have gas first and then the bowel movement would be later, but this first bout was nothing but diarrhea.  Sorry, I know that's gross, but that's what happened.  Surprisingly it didn't do a thing for all that bloating and pain.  I was just in more pain!  The bowel spams were horrendous.  I'd sit on the toilet for as long as I could hoping to get out as much as I could because of those spasms, but there was really no telling when the next bout of diarrhea would actually come.  Sometimes I'd get all cleaned up and back to my bed only to jump right back up and run to the toilet again.  It was nonstop for hours the rest of Sunday.  So much pain.  My colon was having spasms from not being in use for nearly a year.

ILEOSTOMY REVERSAL SURGERY

The reversal surgery itself went so much easier than the ileostomy.  The worst part was the pain from the abdominal bloating which lasted for nearly a week.  I had the surgery on a Wednesday and didn't have a bowel movement until Sunday.  It wasn't the bowel movement but the gas I was trying to relieve.  I get that after surgery like that you're not going to pass anything for several days, especially since you're not really eating anything.  But all that gas and bloating….that was unbearable, and to not be able to pass it, ugh.  I'm just so glad it's over.

They give you morphine or Dilaudid, but all that really does is make you want to sleep.  It never makes you feel like, "Hey, I finally don't feel like my belly's about to explode."

I thought I’d miss my stoma and the convenience of the ostomy bag but I don’t.  It’s so much more convenient not to have it.

I was happy to wake up with no bladder catheter but it meant I needed help getting up each time I needed to go pee.  But by the third day I just got up and helped myself and they decided I could be listed as "independent".  Not only to go pee, but I was constantly feeling like I was going to have diarrhea at any moment, so I needed the freedom to just get up and rush as needed.

I also woke up with my chest port still in and my surgeon, Dr. Strobos, said he simply forgot to remove it (but he got me into the operating room the evening before discharge and took it out).

My nurses were especially proud of me for getting up out of bed on my own and for walking as much as I did.  I appreciated their compliments.  They said I was an inspiration and that they should take me around to inspire other patients.  But I was trying to do all I could just to relieve the gas and pain.  It's torture lying in a hospital bed hardly able to move, unable to get comfortable, and in constant pain and pressure from a grossly distended gut.

The first time I made it to the end of the hallway I said "I'm gonna be sick", and fortunately my nurse plopped me in a nearby wheelchair and handed me a bucket.  Not much came up, but it sure felt like there was gonna be a lot.  The next time I got up to walk I made it around the entire hallway of my unit.  And after that I took on the entire hallway of the unit next to mine too.

First you can only suck on a soaked minty-flavored sponge (well you're not even supposed to do that but I did), and chew a couple tiny ice chips.  Then I got moved up to clear liquids but then got demoted again back to ice chips.  By the fifth day, Sunday, and still no food, (not that I was hungry anyway) I was so determined to get stuff moving!

I had been doing my laps around the entire two units up to four laps at a time, several times a day.  And to give me some kind of routine, I carried my phone so it could count my steps, until I realized that the only way to carry it hands-free was to insert it into the little tiny pocket of my gown, which was really a pocket for a drainage tube.  But after noticing that the weight of the cell phone caused significant droopage of my gown and allowing my left nipple to be fully exposed through the slit for the drainage tube line well, I didn't bother to carry my phone with me anymore after that!  So then I started timing myself.  I found I could do four laps in thirty minutes and at a pretty good pace considering I had to push this thing with me everywhere I went.

It was probably by the second day after surgery that I talked them into letting me be off the oxygen.  I hate the way it tickles my nose.  And I think it was by the third day I convinced them to disconnect me from the IV machine when I did my walks.  I could pick up the pace and not over-exert myself if I didn't have to push that thing around.

Dr. Strobos must have exaggerated when he said I needed to do 50 laps a day.  Four laps at a time cramped me up so bad.  I don't think I ever did more than 16 a day.  But I had other ways to get moving and alleviate the boredom.  I'd get up and make my bed, put movies into the DVD player, and if I stretched the IV machine cord all the way out from the wall and then allow my IV tubes to stretch as far as they could go, I could reach the blinds.  I had to reach extra hard to get to the wand.  I liked having the blinds open until the sun came in too much.  And then I opened them again at night so I could see all the lights across Denver.  I watched people coming and going in the parking lot.  Then I found out that it was ok to unplug the machine from the wall as long as it wasn't for too long or the battery would run out.

I had to be careful maneuvering with that machine once things started moving.  I was running to the bathroom at a moment's notice.  Gladly I always made it.  There was only one time that I didn't think I'd make it. 

LONG OVERDUE UPDATE

Today is February 4, 2017.  I'm finally getting around to updating my blog.  It's been a pathetically long time, I know.  Sorry.  I'll give a quick timeline update from my diagnosis in September 2014 to my ileostomy reversal surgery in September 2016.  Here we go!

My cancer diagnosis was September 10, 2014. Six weeks of Radiation and chemo pills (Xeloda) started September 25, 2014 (a day after my 44^th birthday).  Six-week waiting period before surgery (the sweet spot between not having so much radiation still in me when the surgeon opens me up but not waiting so long that the tumor can start growing again).  Cancer surgery with diverting loop ileostomy was December 15, 2014.  Three weeks later I was back on Xeloda and starting IV chemo.  The pills for two weeks, then one week off, and the IV every three weeks, for a total of up to 12 doses. I only made it through 11 doses because I couldn't tolerate it anymore.  My oncologist said it was ok if we stop. I had worn my ileostomy bag for 9 months and came to love seeing my little nub all the time.  My surgeon said I could just keep it if I wanted to, and for a moment I considered it.  But, I really did want the reversal surgery and be back to normal.  

So that brings me to my ileostomy reversal surgery on September 16, 2015, where I left off in my blog.

SURGERY DATE SCHEDULED!

Still catching up...

September 6, 2015.....I'll have my "diverting ileostomy reversal" surgery on September 16, 2015.  I saw my surgeon, Dr. Strobos, a couple weeks ago for a pre-surgery visit and asked what the surgery would be like.  It's only supposed to be an hour to an hour-and-a-half long.  And I should only be in the hospital about 3-4 days.  Then he said, "I'm just gonna go in where your stoma is, plunk it back in there, and then sew you up.  It's pretty simple."

Oh I couldn't just let that go, I had to tease.  I gave him a quizzical look and said, "Really?  You're just gonna plunk it back in?  Is that a medical term?   Because I've seen your training videos and normally you use bigger words than that."  He laughed.

He said, "Well ok, it's a little more complicated than that," and he explained in more medical terminology and detail what he would be doing.  Then he realized what I'd said and he looked stunned and said, "You've really watched my training videos?"  I told him, "Yeah, I'm really dorky that way.  I didn't have a clue what you were doing in them."

Oh, and he wasn't joking when he said, "You're gonna want to buy some Depends.  Really.  Trust me.  You're going to have diarrhea and it's going to leak and there's not going to be anything you can do about it."  Oh God, I was so hoping he was kidding me.  But he wasn't.  So, for about two weeks after I leave the hospital I'll have to deal with that.

I'm so afraid of having pain in my colon after my surgery and with food going through there again. I'm afraid of my rectum hurting too trying to push.

All year it was hard enough dealing with the mucus in my colon getting hard and dry.  Those Fleet home enemas helped but did they ever cause me pain!

My surgeon did a flexible sigmoidoscopy in the office to see if anything looked strange.  It looked ok.  Then he sent me to the hospital for a gastrografin enema so he could have a really good look.  Ugh.  I had one in February and that one was painful enough.

This one was excruciating!  He warned me that after nearly a year of non-use my colon had atrophied a little and had some colitis.  The contrast hitting my colon during the enema caused me intense spasms and I couldn't help crying from the pain.

All I knew was that I was in excruciating pain.  It was bad enough feeling the pressure of the water, but my entire colon felt like it was going to explode.  I tried so hard not to cry but I couldn't help it.  The good news is that everything looked fine.  The bad news (for me) is that I'm terrified of how my colon is going to react after surgery.

I hate pain.  I really, really hate pain.

Oh, and he said he'll take my chest port out during my surgery.  I'll be so happy to have that gone.

I'M COMPLETELY FINISHED WITH MY CHEMO!

Catching up on my blog here…

I finished my 11th and final round of chemo on August 12, 2015.  The week prior to that I stopped by to see my oncologist, Dr. Witta, because my feet were so red, swollen, and raw I could barely walk.  I was in constant pain.  He said it's from the Xeloda and he told me to stop the pills and not to start them again even with my last round of IV chemo.  By the way, my last round of chemo was a slightly reduced dose because of how numb my fingers and toes were becoming.

Stopping the Xeloda was wonderful!  My feet started healing pretty quickly, and even with that final round of IV chemo they didn't flare up.  I've since noticed, though, that sometimes I do get flare-ups of just the redness, which is strange now that I'm completely done with chemo.  At the pain is gone.  Sometimes my toes get numb and tingly still.

My hands are back to normal.  No more swelling, redness, numbness, or peeling skin.  And the skin on my feet is back to normal too.  I have really soft skin on my feet now.  I love it.  I've always loved taking good care of my feet, and I hated seeing them so bad.

My hair…I remember when all this began a year ago, Dr. Witta said that I wouldn't lose my hair but that it would get thinner.  And it definitely has done that!  I hate to complain but I'm gonna say it…I MISS MY HAIR!  If you didn't know me you wouldn't notice, but I can really tell that my hair has thinned out.  It used to come down past my shoulders, and it still does a little, but it's only some of the layers that are that long.  What I mean is, some of my hair on the top layer is long and some is short.  Same with the under layers.  So it just doesn't look as nice as it used to.

The shortened hair is because my hair had gotten weak and brittle and was breaking so easily.  At first I stopped running my fingers through my hair because it was pulling hair out.  But then I had to actually stop touching my hair, styling it, and not even putting it up in a pony tail.

My hair got so thin I had to use smaller ponytail holders because there wasn't as much hair to hold up. I read on line some ways to stop further damaging my already-damaged hair, like not to blow dry it anymore and to use different shampoo and conditioner.  So I stopped using my regular hair products, bought shampoo and conditioner that has special oils in it (and smells really good too!).

For the past week I've totally changed my hair routine.  Now I wash my hair every other day.  Gently towel dry.  Put in a leave-in conditioner.  Then a little moisturizer that's supposed to strengthen the hair and help manage curls.  And then I have to just let it dry naturally.  I've noticed that in just a week of doing that that my hair isn't falling out as much and I haven't had any breakage.  Not blow drying stops the frizziness from all those split ends.

Here's a good photo of my hair from March this year:

And here's a photo from August this year:

This is actually a pretty good photo.  Some days my hair is really pathetic.  Maybe it doesn't look like that big of a difference to everyone else, especially if you don't know me, but I can really tell how thin it is.  You could blow on my head to move my hair aside and it'll look like a bald spot :)    So I'm really looking forward to my hair growing long and thick again.  I know, I know, at least I didn't actually lose all my hair.


During my 10th and 11th rounds of chemo I found a better way to cool my sore, red feet.  Instead of soaking in a bucket of cold water I started wearing wet socks.  It worked so much better.  I'd take a pair of sweat socks and soak them in cold water and squeeze out most of it but leaving them pretty drippy wet.  Then just wear my Crocs or water sandals.  It kept my feet cool and wet for a long time, and when the socks started to dry, I'd just wet them again.

You wouldn't believe how incredibly good it felt keeping my feet hydrated and cool constantly.  The medical term for it is palmar-plantar erythrodysesthesia.  Some people get it much worse than I did.

It's hard to get a photo that really represents how bad it was but this one shows the outline of the redness and some of the peeling:

There were some times when my feet were extremely red and swollen.  Like I said, I didn't have it as bad as some people, but I can't imagine it being more painful than it was when I could barely walk!

NINTH ROUND OF CHEMO

Note:  Updating again….need to catch my blog up!

July 5, 2015:   A week and a half ago I had my 9th round of chemo.  My doctor said I should only have 2 more and then be finished.  So that will be a total of 11 rounds of chemo.  I’m sure I’ll make it the rest of the way.  One of my fears was that I wouldn’t be able to tolerate all of it, but I’ve done great so far.

The older side effects are lessening in severity, like the cold sensitivity.  It’s not as strong after chemo anymore, and it doesn’t last as long.  Last night I got the kids a frozen strawberry lemonade from McDonald’s and I had a few sips.  No problem with the cold and it felt so good to have something cold again.  It’s really hard to only drink warm water, especially in summer, and especially since I still have hot flashes many times a day.

One of the newer side effects is that my feet react to the chemo now each round.  It used to take about a week for it to kick in, but now it begins just a couple days after chemo.  The bottoms of my feet first start to hurt.  It really hurts to walk.  Then they turn red, red, red!  And then swell.  After a couple days of pain, the pain will taper off and the itching begins.  I’d rather have the pain.  The incessant itching drives me crazy.  It’s hard to fall asleep and it will wake me up in the middle of the night.  Then the peeling starts.

The skin will just start to fall off.  It looks like how peeling from a sunburn looks.  You can just rub and the skin comes off, especially when I’m drying off after my shower.  If my feet get really dry, like if I am barefoot in the house, then the edges of where the skin is peeling is very stiff and not easy to peel, so I continue to use an emery board, rubbing hard, to shave it off.  The skin then falls off easily and a lot.  It’s really gross but I have to do it.  And it feels good too.

I think it must be all the swelling that makes the itching so intense, or maybe it’s just the chemo.  After I get most of the peeling skin off and my skin is smooth, then I put lotion on and then my feet look pretty good.

And finally, the latest trick I’ve learned is to soak my feet in a bucket of cold water.  That was Abby’s idea.  Thanks Abs!  It feels absolutely amazing to do this.  After soaking for about an hour, the swelling, redness, pain, and itching are all gone for about a couple hours or so, especially if I am not on my feet too much.  Plus, it cools my entire body.  I even get goosebumps for a long time afterwards and it feels SO GOOD to be cold for a change.  These hot flashes make me feel sick.  They’re just unbearable.  I might just keep doing the cold water foot-soaks to keep my hot flashes at bay even after I’m done with chemo!  They should invent some kind of water shoe so I can always have my feet in cold water!

My fingers are peeling just as much as they did pre-surgery when I was on the Xeloda, but I protect them now.  Back before my surgery when I was moving out of my house and doing all that cleaning and spackling I wasn’t using any protection.  Now, even cleaning the bathroom I’ll wear those yellow rubber gloves.

Oh, I saw my ophthalmologist the other day and he said my eyes are really very dry from the chemo.  He said I could either use eye drops or he could put plugs in my tear ducts.  But then he said, “But I know you.  You probably won’t even let me get close enough to put plugs in your eyes.”  Yep.

Just like how my body cannot understand that you aren’t supposed to hold your breath while snorkeling, my body also doesn’t understand that my eyes need to be open for the eye doctor to examine them.  I can’t help it!  My eye doc has to use his fingers to hold my eyes open when he puts the thing up close and shines the light in.  You know when they say, “Put your chin here and press your forehead here, and just look straight ahead”, and then you’re looking into this really bright blue light?  That’s when I can hardly keep my eyes open and he uses his fingers to do it for me.  Even then it’s a struggle.  And I think I must look like a fool when he’s putting the eye drops in my eyes because I know I’m blinking like crazy.  Eventually the eye drops get in.  And it’s totally not a conscious thing.  I just can’t help what my eyes are doing.
Many years ago I had a horrible eye doctor.  He just wasn’t a nice person.  He actually yelled at me when I blinked each time he put the puff of air into my eye (which I’m so glad they don’t do anymore).  He told me, “I can’t examine your eyes if you keep blinking!”  I told him I couldn’t help it, and then I stood up and said I want a different doctor, and walked out.

At least my dentist has a sense of humor.  He laughs that he literally has to hold my tongue back from blocking him getting to where he’s trying to work.  I had no idea my tongue was doing that.  And I remember when I had to get a cortisone shot in a finger once.  The doctor kept telling me to hold still, and I said I was, and he said no I wasn’t, and I said I was trying my best, and then he said, “Well I can’t shoot a moving target!”  He was being serious!  Geez, how bad was I shaking that he couldn’t give me the shot??

Ok, that was a long digression.  I opted to do the eye drops myself rather than have him stick plugs in my eyes!  Amazingly I don’t have any problem doing it myself, and I think that’s because I know I’m in control of what’s happening.

I’ve noticed that my hair is thinning a little and it’s getting very dry and kind of seems to have more split ends.  So I started taking Biotin.  I’m sure my hair will improve once I’m finished with the chemo.

Oh, and I do still get physically exhausted pretty easily.  Last week Abby and I played some Frisbee and then badminton and I was really, really sore for a couple days.  We’ve also been out walking 2-3 miles at a time some days.  That’s really overdoing it for me but I know the exercise is good for me.  I thought my “chemo arm” was all healed up but I found out I can’t hold and throw a Frisbee like normal, and I used to be pretty good at Frisbee.

The arm that had the chemo infiltratation used to be so bad that I couldn’t even stretch out my arm having my palm facing up.  My hand could only turn sideways.  I can do it now, so at least it’s improving.  No biggie that I can’t throw a Frisbee anymore.  Life is good.