FIVE YEARS CANCER FREE, PROBIOTICS, AND ECZEMA

June 6, 2019

Today is a Thursday and my day off work and I decided I should do an update here since it’s been a couple of years.  I wonder if anyone has read this blog.  I wonder if I've helped anyone.  

Come September this year it’ll be my 5-year mark since diagnosis.  What that guideline means is that from the time of diagnosis until now (or three months from now) my initial cancer is gone and cancer has not spread or returned.  They use this guideline to consider you cancer free, so basically from here moving forward I’m just like anyone else walking around who hasn’t been diagnosed with cancer. 

In April I had my last CAT scan, and Dr. Witta, my oncologist, called with the results and said, “Absolutely clear, no sign of anything.  You are cured!”  Of course no one knows if I will ever get cancer again, or whether there is one cancer cell lingering somewhere in wait to rear its ugly little head again, but for all that we do know and can do and can tell, I am cancer free.  And I will gladly accept and take that with all the glory and goodness it makes me feel and shout from the rooftops, “Yes! Thank you!  I made it, and I’m still here!” 

When you are diagnosed with cancer that’s all you want, not only to continue living but to continue living without that mark put upon you.  So yes, it’s a pretty big deal to be labeled cured and cancer free.  And I am just like anyone else walking around out there.  The thing we have in common is that we don’t know IF we have cancer.  Before my diagnosis in September 2014 I had cancer for about a year to 18 months prior without knowing it.  And when I look back and think about that fact, it’s sad to think that’s possible for any of us.

So this year marks a pretty big milestone for me.  I’ve been trying so many new things.  I’m saying yes to so many things.  I’m living in the moment.  I’m proactive about my health and taking charge of it.  I’m living a richer and fuller life because of all that I’ve experienced, learned, felt, worried about, and imagined both good and bad. 

I WANT TO MENTION A FEW THINGS

Since I like being thorough, and because I have no idea who is reading this entire blog, it’s worth mentioning a few things.

I’m pretty sure I’ve mentioned in this blog about a mysterious watery discharge that began after my radiation treatment.  It was literally like water running down my legs one morning.  My radiation oncologist had no idea what I was talking about.  Neither did my medical oncologist.  Neither did my family doctor.  We all agreed it was an effect from the radiation treatment to my colon but no one could definitively tell me why or what to do about it. 

Long story short, I started seeing a gynecologist recently.  She said I had atrophic vaginitis, which is a thinning and drying of the vaginal lining due to menopause and lack of estrogen.  She started me on estradiol inserts but the watery discharge continued.  I was so unhappy about it.  This discharge and wetness would just suddenly appear, and I’d be as wet as if I had just stepped out of the shower and didn’t dry off, well, vaginally speaking anyway.  This was no way to live.  I had to wear a maxi pad every single day, all day, all night.   

I believe the universe sends us in the right direction at the right time which is why even when things seem to “go wrong” I just go with the flow, accept it, and move on because I know everything works out for a reason. 

So I saw her again a month later, just after the new year this year, 2019, and found out she didn’t renew her contract with the company I work for so that meant she fell into my insurance’s secondary tier which meant my copay was now doubled.  Despite my efforts to rectify this, which is usually just a matter of the doctor signing a form and submitting it to insurance, the doctor’s office refused, so I immediately sought out another gynecologist who was in my first tier. 

Please note:  Everyone’s insurance works differently, but please always be aware of how your insurance works.  Be well-informed so that you can always make informed decisions about your care and to know you you are getting billed properly.  You need to be proactive.  No one else will care if you are overcharged!

Ok, back to my story.  So I found a new gynecologist right up the street from my house, and at my first visit I asked him what in the hell this watery discharge was and what can be done about it.  He knew immediately what it was without a doubt and he knew the cure! 

The radiation to my colon caused damage to the surrounding tissues, obviously, throwing my vaginal pH balance off.  That combined with the atrophy combined with the lack of estrogen, and everything’s just out of whack.  If this imbalance gets too bad then it results in a BV infection (which I did have once back in 2015 I think…had to take those nasty Metronidazole pills which they might as well call “vomit pills” because that’s what they make you do.  Literally, you have to swallow one, and then between bouts of vomiting try to swallow the other and then look through your vomit to make sure the pills didn’t come back up.  Yeah I know, gross). 

Ok, so the solution for this pH imbalance is simple.  Take “Garden of Life Raw Probiotics Vaginal Care”.  The one I’m on is no refrigeration required, 50 billion CFU, and 38 probiotic strains.  No doubt about it, this works!  My vagina is happy and in balance and I don’t have to feel like I just got out of the pool and someone stole my towel (ha ha). 

So the thing about taking probiotics is that they basically get rid of the bad bacteria and replace it with good bacteria.  There is a slight transitional period where you are going to think probiotics are actually bad for you.  Don’t give up on it.  Persist through the transition.  If what you are eating is making you bloated, gassy, and crampy, then it means you are eating the wrong stuff.  Change your diet, clean it up, stop eating sugar, meats, fats, gluten, wheat, carbs, and any other crap that you know isn’t good for you, and you will feel much better.  Eating all that bad stuff is only going to make your body have to work that much harder to clear out the bad bacteria. 

I had the bloating, gas, and cramps for a good 2-3 weeks, plus my bowel movements changed from its normal brown to a light grey nearly white color.  I knew something wasn’t right!  But I made it through and now I’m back to normal, and I actually feel bad if I eat crappy foods.  You actually begin to lose all your cravings for those bad foods too!  You actually crave the good stuff, vegetables and nutrients. 

Everyone is different.  I take one pill every other day ON AN EMPTY STOMACH and I no longer have any side effects.  Some people may need it every day, but I can get by every other day and that saves me money, so I suggest you try it and see what works best for you.  Even if you don’t have a vagina, I recommend taking these probiotics or something similar. 

So then, the first gynecologist I was seeing ended up sending me a refund.  I guess they finally figured out they were billing me wrong or maybe she finally submitted the paperwork to be in my Tier 1.  I don’t know, but it’s too late.  I’m staying with this new gynecologist.  

Also of note, I started taking Biote hormone replacement pellets and I love it!!  I decided I was too young for menopause and I want to feel the way I used to before the cancer.  I highly recommend it.  No side effects, and the results are amazing.  

CURING ECZEMA

The last really neat thing I can tell you about taking probiotics, is that in all the research I did on it I learned that it can cure eczema.  Yes I said that right, CURE IT. 

I told my son about it, he decided to try it, and within a few days his chronic full-body eczema started to clear up.  After a couple weeks it was completely gone! 

He had been paying $40 a pop to see the dermatologist who admitted he had never seen a full-body outbreak case before and had no clue what causes it or what to do about it.  He was paying for bloodwork which proved nothing.  He went through two to three tubes worth of colloidal oatmeal cream (at $6 per tube) per week.  He’s tried prescription creams.  Gels.  Salves.  Changed all his soaps and cleansers.  None of that worked and he suffered for months.  Nothing worked until the probiotics, which cured it completely within two weeks!    

To aid you in your own research, there are three main probiotics that work against eczema:  Bifidobacterium lactis, Lactobacillus rhamnosus, and Lactobacillus acidophilus.  So look for those three.  Also, the more probiotic strains working together, the better, so that’s why I like that mine has 38 strains.  The only thing you may need to experiment with is the number of CFU, the per billion. 

Ok, I hoped I’ve helped someone out there by sharing all my experiences.  I don't know if I'll periodically update this blog.  Maybe.  

Have a lovely day :) 

ILEOSTOMY WOUND NOT HEALING

October 2015 to December 2015 —To make a long story much shorter, in my followup visits with Dr. Strobos he said my incision wasn't healing completely.  The incision area sank inward causing the wound not to heal.  It was so concave it literally looked like a belly button.  (I teased him that the right side of my abdomen looked great, except for the extra belly button, because it looked like he gave me a tummy tuck,  I told him it would have been nice if he'd evened me up and done the same to the other side!)  There are a lot of people who've gone through this same surgery and post photos of their belly on line.  I'm not one of them ;)  But a lot of us have the same-looking belly.  So picture me that way, but with a second belly button.  If you think your complete-lack-of-muscle-tone-lopsided-butt-looking belly can't get any more displeasing-looking, try adding a second belly button.  

Before attempting to fix it, which would require slicing the wound back up, he sent me for an ultrasound to make sure I didn't have a hernia because of how much pain I had,  He didn't want to risk opening me up if I did.  No hernia, thank goodness.  So in his office he did the procedure, and I'm glad he had something to numb the area first!  He cleaned it out and re-stitched it and it looked great. But a few weeks later it just sank again.  He tried again and it seemed to work.  The final attempt was the end of November.  He said if that didn't work I'd have to see a plastic surgeon!

The only way to make it stay was to pull really hard from as deep as he could to bulk up enough support to hold the incision up.  Even with the numbing meds that really hurt.  He said he was really amazed I was able to tolerate that, and he didn't think many people could.  Yay me.  But I wasn't trying to be brave, I just wanted it over with and didn't want the big to-do of going into the hospital.  (I wouldn't recommend it.  It was very painful, and not to mention gross.  I tried not to watch but I just couldn't help it).  It took and it has stayed!

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.