The Past 6 Weeks...

So, I've embarked on a journey to change my health, and ultimately, my life.  Those that have read my previous posts know about the problems I have had with my skin cancer.  In addition to skin cancer, I've had thyroid problems for the past ten years.  Hashimoto's (an autoimmune disease) was also diagnosed shortly after my hypothyroid diagnosis.

When I was diagnosed with SCC, I started researching and thinking.  I thought to myself that I needed to figure out how to make myself healthier, and I needed to start at point A and move forward from there.  Which in turn led me to begin with my thyroid.  The thyroid is the motor of our bodies and if a person thinks it's not that important...well, they're wrong!  Just google the function of the thyroid and everything it is connected to.  MIND. BOGGLING.  Upon a search one day I ran across a blog that talked about autoimmune diseases (more importantly, Hashimoto's).  What turned out in a reading frenzy that day ended up being me 6 weeks later. 

After much reading, analyzing, and soul searching I decided to take on the challenge of the Autoimmune Protocol.  It's Paleo but think strict.  This diet eliminates gluten, grains, nuts & seeds (and all spices that contain them), legumes, dairy, eggs, processed foods, alcohol, nightshades (tomatoes, peppers, potatoes)  and anything that might contain them (like some vitamins and definitely NSAIDS).  Oh, and fun.  BAH!

What the what?

First, I never had a 'withdrawal' headache.  Prior to the AIP I have been on numerous and sometimes very costly diets.  With every one of the them I would have a headache.  I chalked this up to the caffeine or sugar withdrawals.  Not with the AIP.  Nope. Not one single headache.

Second, I ate without counting anything.  No points, no calories, no fat grams...no counting. 
I do plug data into My Fitness Pal because I've realized I have a tendency to not eat ENOUGH calories.  My goal is 1200-1400 calories a day, and without keeping up with it, there is no way I'd eat enough.  I am just not hungry-zero cravings.

This has been a definite lifestyle change. After the first week I told my husband that this was it.  No more diets.  My brain fog had lifted drastically, many symptoms I had lived with for YEARS were gone, others were dramatically improved. It was amazing.  Never have I done anything that made me feel this good.  In truth, I had energy that I forgot was possible.  I had forgotten what feeling good felt like.

Last week I visited a new endocrinologist (and I think he's fabulous, and also the 6th doctor I have visited about my thyroid issues).  After reviewing all of my medical history and having a very thorough discussion, he suggested the possibility of having Celiac disease.  This had never been mentioned prior to this visit with any doctor (even my Holistic doc), but I must say that none of the previous doctors delved into my medical history, lab work, or anything else as much as this doc had.  I had LOTS of blood drawn and am waiting for all the lab results to come in.  I am excited.  Why?  Because I want to know how my body has changed in the past 5 weeks (it was 5 weeks to the day when I went for that visit).  I want to see if my white blood counts went down.  Did my antibodies go down to normal or even HALFWAY normal levels?  And what did the Celiac panel reveal (although these tests can be inconclusive)? Either way, I feel healthier and that's what matters.  I started at point A.  I'm working my way through it in order to move to point B. 

Something I've considered is the fact that in previous diets they were always done to lose weight.  On the AIP my goal wasn't for weight loss, it was for health.    I know with AIP it is 100% on...there is no cheat day, no cheat meal, no cheat bite.  This has helped tremendously knowing that if I cheat, I am starting back at zero.  It also helps when I repeat in my head (that is poison, that is poison...then my mind sing-songs "That girl is poison..") when I am craving or just plain wanting something processed. 

We used to be fast food junkies, which has come to a complete stop for me.  No McDs, Sonic, Simple Simon's Pizza, KFC, Starz...you name it-gone.  I have been to Chick-fi-la twice (while we had a day out of pocket) and I ordered gluten friendly and stuck to the confines of the AIP.  I have eaten at Texas Roadhouse twice and ordered gluten friendly and stuck to the AIP.  Did I want a roll?  You bet!  But I knew I would defeat everything I had done in the past 30 something days. 

Another thing I have considered is the type of diets I have done.  I have done Weight Watchers (twice), Nutri-System, Atkins, two different Candida diets, 21 Day Fix, and Advocare 24 day Challenge.  Out of all of them, I was most successful on Advocare.  But nothing matches to the success I am seeing on this diet.  None of those diets made me feel good.  None of them cleared my brain fog.  I'm not saying they aren't successful for others, because I know they are..I'm saying they weren't right for me.  And if I really do have Celiac disease, it makes sense.  With having malabsorption issues, it feels like a piece of my puzzle was found. 

In the past 6 weeks I have seen major improvements to my health.  I have a better sense of knowing what I need, where I am headed, and how I want to get there.  My family has been a supportive component, as well as my friends.  In the next six weeks I hope to make more lifestyle changes, challenge myself to try new things, and improve upon what I have.  In the past six weeks I have lost just shy of 20 pounds.  <----which is a consequence of the AIP, not an intentional reason for the diet.
In the past six weeks, I actually feel good.  And that is worth all the trial and error, banishing fast foods, and prepping my AIP foods!   With that said, whoever came up with 21 days of doing something makes a habit...well, that may be true, but I still want a Coke.  And pizza.  And Bottlecaps.  And BBQ sauce.  And spaghetti...and a Texas Roadhouse roll...and... 

It's taken me a long time to get to this point and I'm just glad I didn't give up, give in, or quit---because there's always an after.  So keep on keeping on, find what makes you feel good, what makes you happy, and remember, it's there.  We just have to find it.

P.S.  These bottom pics were taken a little over 4 weeks into AIP.  The comparison pic (on top of each one)  weren't even taken at my heaviest weight.   I see a smile in each one, but that is not a reflection of  how I felt or what I was going through at that moment. 

And a Little Bit of After...

Before I had skin cancer I had other issues.
Hypothyroidism to name one, and then Hashimoto's. These two 'problems' haven't ruled my life, but they have navigated the course. So years AFTER having these problems, I continued to feel worse. It seemed if I didn't have one symptom I had twenty-two! I had a tendency to ignore these problems, live with the symptoms, and regularly visit the doctors.

A few things I have learned in the AFTER:
1) Don't take the doctor's word as the Gospel. Now don't take this wrong...I believe doctor's are fabulous and smart and all that stuff, but I am working on my 6th doctor and I can tell you nearly all of them have something different to say and want to 'treat' my problems differently. The thing is, there have been many times I walked out of the doctor's office and not felt at peace with what they wanted to do, or I have offered up some scant piece of something I had learned about, only then made to feel foolish for mentioning it! It's frustrating when I haven't been to medical school, and yet, still want a say so in how my treatments go.

2) It's never okay to settle. Settle on what? Whatever! Don't settle for less than you feel you are worth. Don't settle on a single doctor. Or a diet. Or a workout. Or someone's advice. Or a medicine. Settle on what makes you happy. Satisfied. Worthwhile!

3) Never, ever, never, ever, ever give up! Never throw in the towel. Fight, argue, research, discuss, and get after it. There is not one single thing standing in your way. Nobody will do it for you, either. It's yours. Own it. Carry the banner for yourself. And don't ever give up until...(go back to #2) YOU ARE SATISFIED.

Let's talk doctors. I once drove two hours and fifteen minutes to see this doctor. I read reviews on how great she was, that she took the time to listen to your ails and wails. So, I booked an appointment because I thought she was just what I needed. She was an internal medicine doctor and I had high hopes for our relationship. I WANTED a good doctor, don't you see? I wanted us to be long-term.

As a sat in the exam room I heard her a few rooms down discussing medicine stuff with another patient. There had been one lady in the waiting room when I came in. It took nearly an hour for her to get to me. In walks this lady who barely could hold her weight. She was a very large lady and immediately I formed a biased opinion. But I stuffed that opinion in the corner of my dark self and told it to be quiet, stay still, don't rear the ugly.

My doctor was very thorough and listened to my concerns. We talked for a time and she ordered a butt load of blood work. As she got up to leave I noticed she had to rely on using the exam table as leverage. It bothered me. I watched as she slowly straightened up, shuffled to the door, heard her labored breathing. Stay down biased opinion, I demanded.

The next few hours were waiting at a hospital to have blood drawn. The guy called my name, looked me up and down and shook his head. He said he didn't know if I would walk out of there with all the blood he would have to draw. I eyed his fist full of vials and asked for cookies and coke on the ready.

I ended up with a $1,000 lab bill, a thyroid medicine, and a doctor who declared she had never seen some of the numbers my results furnished. My iron was way low (iron pills), my Vitamin D levels were barely existent (given pills again), my Calcium was crazy, my TSH number insane, all of my other vitamins from A to K were so low they would have won a limbo contest. Pills, pills, and more (say it with me!) PILLS.

I returned in three months to see what all these pills had done. More lab work. Results came in. Slight improvement on thyroid, less than satisfied results with vitamin levels. I watched again how my doctor breathed while standing, had to hold on to smartly placed furniture in  the exam room just to leave. It broke my heart to think it... but biased opinion won right there that day. Doctor asked me to come back in a month after more rounds of pills. I never went back, for my opinion had finally came out of time-out. No doubt Doctor had a great bedside manner. No doubt she listened. No doubt she was on her way to solving my ails and wails. But she barely could function. My opinion was if she couldn't help herself, how would she help me? The long distance trip sealed it, I used it as an excuse to assuage my guilt. I realize not every doctor will be the picture of perfect health. I realize they have health problems, too. I realize they are human. But I had to move on because biased opinion refused to stay in the corner.

So, the search for another doctor went on. Yet, that's another AFTER for another day.

Peace and God Bless! (And hello Kim!)

Update on an Update---sorta.

Behold---the face after another round of Zyclara.  Hard to see what it really looks like via a picture (and from my iPhone, no less). 

I tried to filter the color out so that you could see my scar (and now my wrinkles really stand out!), but it's still difficult to really see the effects. 

First, my skin is extra SUPER dry!  I currently have the thick Vitamin E moisturizer on, which is kind of a grody feeling. Feels good on my sandpaper, though, so I won't complain.  That's something I've noticed a lot of is how dry it has been.  There are some flaky areas, but nothing I haven't had before during a cold winter. 

Second, I have a place above my lip (actually looks like an extension of my upper lip peak) that is colored like a sore, but just very flat and dry.  There are a few other places that are smaller, similar...but only I would be able to point them out to you. 

I am waiting for an appointment with my new doctor---one that my surgeon recommended.  One reason I decided to make this switch (other than the recommendation) is the fact that my surgeon wanted me to use Efudex on my face and on my SCC site.  The other derm decided I didn't need that and prescribed the Imiquimod.  One thing I am learning (yes, old dogs can learn new tricks!) is that I am in control of ME.  I can question, discuss, and even argue (carefully) with my doctors.  I employ them.  And even if I LIKE them, they still are supposed to be working with me to figure these things out.  I am learning more as I go through this--I research, I experience--and at the end of the day, when I am uncertain about something I have to have a voice for my own good.

So...that's somewhat of an update.  Not a whole lot to report, but that's not always a bad thing!

Almost There!

I can see the sunshine... but with a good dose of sunscreen. (sarcasm alert) I have almost always worn sunscreen, whether  with my  makeup, or apurposely slathered from the SPF bottle. My husband made mention maybe that's why I have these issues--- its the sunscreen that did it! While I am always up for a juicy government conspiracy, this comment didn't even make me laugh.

I am currently experiencing major dehydration on my face--- feels gross. My hair guru said she could tell my face appeared 'tight', and not that youthful gravity-has-not-affected-skin tight, but sucked dry of all moisture tight. I have some flakes, some redness, and definitely an older appearance. Several bumps have broken through... will be interested in seeing what they are.  One on my cheek is definitely something to look at, as the spot that is on my nose. I bought a small 'goes on dry' sunscreen (70 SPF, I think) to leave on my desk at school. Since I have recess duty, I smear it on about 20-30 minutes before we prepare to leave  class.

I have a picture that I will upload later if I can, just so everyone can see the reddish places I am talking about. I hope everyone is enjoying this fine spring weather. Our countdown is on for winter break! Enjoy life, people!

Another Round Has Started

Howdy!  I am writing a quick update.  Not much to report.  As of this morning, I have applied Zyclara twice.  A few things I noticed right before going into this round:  some bumps that resembled pimples, but weren't, had popped up.  Definitely the one on my nose...it's still there.  I am applying cream to the whole face, which has made my cheeks somewhat rosier. 

This is a pic I took after applying the second day of Zylcara.
I still dislike my scar on my nose.  You can also see that my nose seems to be somewhat fluffier. 
The lining of my nose gets really dry feeling and then I start having sinus issues.  This started at Day 1 of treatment.  It then progresses to grody drainage, with the need to hock loogies quite often (sorry for the gross illustration, but it's true).    Anyway, I'm interested in seeing the 'end' results, although I will be doing a second round for the face area sans nose (since I did just the nose first round).  Whatever the outcome, I will be considering my options much more carefully and more thoughtfully, without a rush to making a determination until I'm 100% positive of my choice.

On a sidenote:  dilemma 1 has presented itself to the household.  The daughter wants to tan a few times in a tanning bed to add some color before prom.  I spoke with her (doubt she listened) and she doesn't like the idea of spray ons (she said every person that she has seen with a spray tan appears orange-tinged).  I also told her that spray ons don't leave scars.  She has pursued debate with research and statistics of childhood burns, sun exposure, etc.  It will work out, no doubt, but still...

That's it for quick update.  So, for all you tanners and non-tanners, have a great weekend! 

One Round Down---One More to Go!

Greetings, friendly people!  I am sorry for the lack of update, I'm sure you all (one or two of you) were anxiously awaiting my results. Well, I can't say for sure what my results have been!  This has truly been a learning experience for me, and one I have several regrets over.  Hind sight is 20/20, or so 'they' say.  Here's a few things I've learned this week---

1)  It's your body.  Don't be bullied or pressured into making a decision (promptly) without much consideration, counseling (if needed), or second/third/tenth opinions.

2)  It's okay to say 'wait' if it isn't life threatening at that moment.

3)  It's okay to ask for advice.  And then some.

4)  It's okay to cancel a follow up appointment when you know that your appointment will last literally two minutes, with nothing to show for it except a $300 bill.

5)  It's okay to have regrets.  Cry about it. Move on.

Okay.  So here's where I'm at right now.  I WISH I had canceled my surgery appointment for my nose.  Here's why.  The appointment was made directly after the biopsy results came in.  By the time the surgery date rolled around, NOTHING was on my nose.  So at that point, where to exactly have surgery became a guessing game.  I had a hazy picture of a disappearing biopsy and the nurse and I had to play 'pin the dot' on my nose.  It was difficult, and we erased and re-marked my nose three times.  I have a bad feeling that we had it right on the first try.  You see, after my first round with Zyclara, IT's BACK.  Right below the tip of the scar line.  And I get the feeling it is my original, biopsied BCC.  Which would mean that I had healthy tissue operated and cut away, and a nice scar to show for it.  For nothing.  My husband made a remark to me today and it struck me as how right he was, and why didn't I think of that.  He said---"It's your body.  Why didn't you cancel the appointment until you knew exactly where it was again?"  Yeah.  Why didn't he offer that advice to me prior to the surgery!?  LOL.  Some days I'm not the brightest crayon in the box.

Here's my hazy concert picture.  Can you see the biopsy fading from my nose?  I'm just hoping this is another spot, possibly an AK that the Zyclara has brought to the surface.  Crossing fingers.  Shout out to my concert-friend-in-crime, Casey.

In addition to all that, I now have a bump that has formed, seemingly, within the cartilage right below the actual nose bone.  It's on my right side and I definitely have a bump.  I've read where that may happen when there is surgery around cartilage (or big needles being stuck in it).  I'm hoping it doesn't get any larger and goes away on its own. 

Please don't think I'm a vain person.  I do have my moments, and it is a little deflating to one's self esteem at times.  Right now I am avoiding the mirror when absolutely possible.  Yes, it bothers me.  Especially when I feel like I haven't made the right decision and I have proof of it.  I have issues with being right.

All in all, the Zyclara went oddly well.  I don't know if that means it's working and I reacted well, or it's not working and that's why I reacted well.  My last day to apply the cream was the 14th.  Just this week I have two spots (one that I believe is the original BCC) and another one beside it which have appeared.  This may be due to the Zyclara and they are just now showing up.  Glad I didn't go to my 'check up' for it...there was nothing there.  (Seems to be a common theme). 

I have decided to forgo an appointment about undeclared BCC and document it through pictures and measurements (something I'd wish I had done when I had the biopsy---word of advice, document everything!) and then talk about it with my Derm at the next appointment (which would be after the next 14 days of Zyclara).  As expensive as office visits are, I'm trying to lean down on the trips.

All that being said, I'm living with my tiny regrets and they may seem small in comparison to the world of REALLY big problems others are having.  I realize this.  I'm human, too.  I know I have many blessings to be thankful for (and I really am), so I'm just going to have to muddle through my feelings and get over it.

So, here's to my old nose!  Cheers.  You were my favorite feature.  And I'm thankful it doesn't have a Frankenstein scar on it.  (Baby steps, right?)  Shout out to my glam friends, Devon and Jessica.

And something that I'm always thankful for---this bunch seen below. Even on my bad days.

In closing, I hope you have received something that may be useful to you in the future, or something to consider one day.  If you have any questions, or even a thought, please leave it in the comments section.  Appreciate your time!  Will be updating right before the second round, which would be close to the end of January.  Until then...see ya!

4th Day In...and a Bunch of Regret

Well, I'm currently on day 4, tonight will be my 5th application.  I haven't seen much difference in my skin---but my body and how I feel physically...OY.  Symptoms I have had include:  MAJOR headache, not sleeping well (I normally sleep like a rock, or so says the husband), lining of my nose hurts, I feel like a booger factory, and I am a Debbie Downer.  Crying over everything and anything is just not like me. 

I am waiting on the derm (RC) to call me back because I'm concerned with having an autoimmune disorder that the med may not work properly.  I realize there is a butt-load of side effects, but that's not what concerns me.  I'd rather know that the cream is working on my skin, and not just causing side effects without the treatment of skin.  Better to figure it out now than go through a whole round of treatment for naught. 

Today I had my first real regretful feeling.  I was at work and while washing my hands I was staring at my scar.  I wish I had thought it through more carefully, I wish I'd had more information prior to the surgery, I wish I'd considered every angle...but you know what? Maybe I wouldn't have had all the insight that I do now, I really don't know.  Something else I thought about is the fact that if I had just chosen to do the chemo cream I wouldn't have this scar down my nose.  I hate having this scar.  Seriously.  I already have one on my mouth from an incident with barbed wire at the age of 5.  That is just a second nature scar to me.  But now I have another one.  And I dislike it---cannot stand it.  Maybe it's just my pity party kicking in, but it is what it is.  Ever have moments like those?

I am still documenting my nose via pics daily, but not much change to report.  Will post a triple duty one in a few days.

Keep warm folks!

Day 2~Not Much Has Changed....Yet.

Here it is-day 2.  Not much change.  I did feel it burning last night. 

I'm trying to get the pictures just right so that I can see the true difference.  It appears when I look in the mirror my nose is more swelled.  The bottom picture is before I started treatment.  I can see the white scar well in this picture.  That is when it started to hypertrophy.  I sought the derm's treatment THAT week.  I did not wait.  You can see that the biopsy site still had not healed.  I think this may be because my nose was traumatized.  That's a good theory, no?  I mean, it was just coming out of surgery!!!   

Anyway, my nose is much drier and I expect it may get worse.  I'm prepared for that.  There isn't  a whole lot of information on Zyclara treatment because it was/is mainly used for certain types of warts.  I have found a message board that goes back to 2011.  I'm on the 3.75% dosage.  What are AKs?  Well, here's what the derm (RC) told me.

AK=Actinic Keratosis= potential precancer growths
If left untreated they may develop into squamous cell carcinoma (remember, I've had one of those on my clavicle).

There are several different options out there, but the three I've been introduced to are:
*cryosurgery-liquid nitrogen~~I've had several precancers destroyed this way.  The scar I now have is a result of a basal cell carcinoma, although years before had been 'frozen' with the nitrogen.

*5-FU is a topical chemo cream (not what I'm taking) and * Imiquimod (what I'm taking).

Imiquimod is NOT a chemo cream like 5-FU.  Essentially, it stimulates the immune system to produce a certain chemical that destroys cancer and pre-cancers.  One downside to this is...if you have an autoimmune disorder (like I do) it may not work as intended.  Yet, the derm (RC) thought this was a good option.  Anyway, I decided to take the risk.  In the future, I may end up using the 5-FU cream (the pics I've seen are not pretty), but it is said to do the job and doesn't leave scarring.

From my understanding, these creams are like a carpet cleaner.  Imagine you have your living room covered in carpet and you notice one or two stains.  You decide instead of spot treatment you will just shampoo the whole carpet.  What happens?  You end up bringing out stains/dirt you didn't realize were there.  That's what these creams do.  They bring out the AKs that are lying in wait under the surface.  Nasty boogers.

I think the best bet for treatment is to be aware of your body and any changes you may see.  Go to the dermatologist yearly and have an exam.  Yes, it is uncomfortable--but so is the alternative.  Find a good doctor, one that listens to your concerns and one that is very thorough.  Ask others who they go to and what their office visits are like.  You can learn a lot about a doctor like this. 

Realize I'm not a medical expert, that this is coming from my experiences, what I'm told by doctors, and what I've researched (Google can be misleading!)---so I'm not offering anyone advice or treatment...just a page from my life.

Thanks for reading!

How Did it Feel?~~Day 1

 I forgot to mention how I felt the first time.  Emotionally---I was anxious.  I am sure this may be typical of anyone with any type of procedure, bad news, etc.  Me?  I'm no different.  The pump of medicine is supposed to be one full squirt to cover the whole face.  So...how do I know if I'm putting the right amount on?  After I checked what one full squirt looked like, I went from my guessing.  We shall see!  I figure as long as I'm covering the nose itself (and  my little flanks on the nose bone) I should be okay.  Physically---it kinda itched, not much.  Maybe that was more me in my head than anything.  I put the cream on about an hour before I went to bed.  I didn't want to chance the pillow rubbing anything off, and then it getting on my eye or something (L.O.L.  my total train of thought!)        

I didn't sleep well last night, but that could have been the anxiety I was feeling.  Was it going to itch?  Burn?  Rub off?  You know, hypochondriac-like.


Wish me luck!                                                                           

Day 1 of Zyclara---and Let's Talk Hypertrophy!

Good day and Happy New Year!  Hoping 2015 will bring many blessings to us all. 

First off:  I am on day 1 of Zyclara.  I am instructed to apply at night.










 


So I applied last night and woke up (like) this morning and took a picture of my nose.

The thing is, my two derms have conflicting views.  Dr. D from the big teaching hospital that did my surgeries (and knows his biz) wanted me to do JUST my nose.  Once that treatment is finished, he wanted me to move on to my cheeks.  The other (I'll call her RC) wanted me to do my whole face since it was Zyclara.  Here's the deal, and I may sound stupid for this thought, but I have really sensitive skin.  I also teach.  I also have recess duty.  I don't know how my skin will react, if I will appear leprous, or just look like I have a sunburn...or nothing at all!  I. DON'T. KNOW.   So, I'm thinking with the cold windy days ahead of us, it would be easier to shield just my nose while on recess duty rather than my whole face. Having an aversion to being cold anyway---well, I'm gonna follow Dr.D's advice. Also, Dr.D said these creams are more tolerable in the winter.  Just throwing that in there for good measure.



I think my nose is traumatized---the second biopsy site on the end of my nose should have healed much more quickly!

Another thing:  I hypertrophied.  On both surgery scars.  Wonderful, ain't it?  My chest scar is exactly 1 1/2 inches long.  In my crapola iPhone 4 pictures you can't see the true nature of this scar.  Dr.D was raving about his surgery, proclaiming that the scar was going to be an itty, bitty, thin line.  Three months later he was horrified at the Frankenstein-ish scar.  The 'tracks' of the stitches were very prominent, the scar itself was a fat little worm.  He was upset that I had not sought my derms (RC) help in getting this taken care of asap.  He injected some steroid into the scar and said it was 'almost' by 'this' much too late.  His hopes were that it would look less Frankenstein-ish.  The scar itself did react well to the shots and has flattened (although the train tracks still exist).  My nose was doing awesome-ly...and then I woke up one morning and BOOM!  there it was. A cross on my bridge.