I LOST A FRIEND TODAY

I lost a friend today.  My partner in healing. I never knew how much it could hurt, to lose someone I’ve never met in person.

 

Shannon and I crossed paths online in a Facebook group. I posted one day, in hopes of finding someone else with MDS, going the natural healing route, without much belief that I’d find anyone like me.  I was wrong.  I received a message from Shannon, and honestly, it was one of the happiest days of this journey, and a relief off my heart.

I wasn’t alone!

You see, ever since I was diagnosed and I refused chemotherapy, this journey has been a lonely one.  No one knew exactly what I faced on a day to day basis. I was going blindly into a territory most avoid. Most people just follow their doctor’s treatment plan, and most don’t make it out alive, unfortunately.  I chose to live. I chose to be pro-active.  But that choice left me lonely, on an unknown journey.

Until I found Shannon. 

She was my light. 

I knew that if I heard of any treatment, tried something myself, or just needed to vent, she was my girl.  We compared stories, treatment options, blood counts, the ups and the downs. We encouraged each other every step of the way, knowing we were on the right path, and feeling so disheartened when we heard of another life lost due to MDS.

 

Well, today, I was going about my regular routine and it dawned on me that I hadn’t talked with Shannon in a few days.  I went to her Facebook page, and my heart dropped.  This can not be true.  I saw a post from her daughter, that her mother had passed away today.  Tears.  I couldn’t catch my breath.  What went wrong.

This can’t be! 

How could this happen so sudden.  Why Shannon?

 

She was incredibly positive. A light among the darkness.  While I never met her in person, as she lived in IL and me in CA, we still had such a strong bond even hundreds of miles away.  She had a beautiful family, and cared so much for her children.  

 

I reached out and got more information from her daughter.  Her body stopped making platelets completely and wouldn’t take the transfusions either.  Her bleeding killed her.  This can’t be.

 

It wasn’t until I heard more about the situation that it made more sense, and angered me to no belief at the same time.  

 

Shannon’s blood counts were up and down, similar to mine. Lately, I remember her telling me they were low, but she was so positive they’d come back up as they had in the past.  Well, through our discussions, I know she wasn’t fond of her oncologist, because he was pretty negative each time about her choice of natural treatment.  This time, she listened to him.  He talked her into getting on chemo.  And now she’s gone.

 

MDS is a difficult disease, but chemo is what took my friend away from this world.  She was such a strong person, and it angers me that the doctors scared her into their treatment, and now she’s gone.

 

Shannon, I know you were scared.  This whole journey is scary.  I know now you’re out of pain, and that alone makes me smile, because you deserve to truly live and be happy.  This world was too painful for your beautiful soul.  We’ve seen too many young lives lost to this disease, and you were my partner in healing.

 

Now more than ever, I know I will show that we can heal.  I have to. For Shannon. For myself.  For anyone diagnosed with this disease.  I know Shannon is up there, cheering me on just as she did here on earth.  

 

I’ll do this, Shannon.  You knew we could do this. I know we can do this.

 

There is no other option.

THE IRONY OF LIFE

I can tell you without a doubt that God has a sense of humor.  Actually, God’s plan may seem quite ironic, if I’m speaking the truth.

 

You see, I have always lived my life following *most* rules.  By this I mean, I never smoked, never did drugs, never even tried them.  I don’t drink alcohol. I’ve never been drunk.  I prefer to have complete control of my body/life so giving in to substances that alter my mental state are definitely not something I want to have any part of. (control freak anyone??)

 

I watched friends drink, do drugs, “go wild” if you will.  I was always the designated driver. 

I was the responsible one.

 

I’ve always been driven, had goals, dreams, and I wasn’t afraid of going after them.  I knew I wanted to live in California. I wanted to be an extremely successful director.  So I went straight from high school to college (as in within a week or so after graduation) and finished in 3.5 years.  Literally, days after I graduated, my car and u-haul were packed to the brim with all my belongings, and I was driving across the country with my tabby cat, Simba, to my new home in Los Angeles, California.  I didn’t have a job, I barely knew anyone, but none of that mattered. I was going to make my dreams come true.

 

Fast forward to today. 

God’s plan for my life is far from where I pictured myself to be at this point. After some career detours, I never gave up on my dream, and last year my goal was to film something I was proud to put my name on.  To jump back into my dream, and make it come true.  Irony showed it’s face again, and I was broadsided by something I never thought I’d even have to encounter in my life.  

 

My dream train was derailed, FAST.  One thing I was scared of my whole life was blood. The sight of it could knock me out cold.  And yet, now it’s the one thing I’m cheering for minute by minute.  I sit here on my bed, still in my pjs and it’s 2:33pm. I currently have sores all over my body (though nothing like they were nearly 6 months ago). I can’t make a fist nor hold anything with my right hand.  I have joint pain as though I’m 80 years old.  MDS and Sweet’s Syndrome, doctors call it. 

This isn’t f*cking sweet at all.

I don’t think people outside of my immediate family truly know what I’m going through on a day to day basis. I will tell you this: I’ve been blessed by the most amazing husband and daughter I could imagine to go through this with me.  The kindness in both their hearts and the support is immeasurable.  “You look great!” I hear from others.  Which is exactly what I love to hear, because the positivity is what will prevail.  What hurts me deep down though, is the daily struggles that hinder my ability to be the mom that my daughter deserves; the wife that my husband married.  The fact that they have to see me like this, well it breaks my heart in two.    I’ve also come to the painful realization that growing older also comes with growing apart from people I once knew as my best friends.  Everyone has their own lives, families and struggles. I get that. But people I’ve never even met in person, check in on me online, while people I know in real life don’t even reach out once.  I don’t mean to have a pity party, but it does hurt.

 

I am fighting for my life every single day, fighting to give my body what it needs to create blood cells that will keep me kicking. Blood is kinda important, ya know? And if you choose a route like I did, to heal naturally, it’s a VERY lonely path with not much guidance.  Imagine walking through the jungle. You come to a fork in the road, and one path is clouded by the heaviest fog, you can barely see 3 feet in front of you, while the other path is clear as day, but the path drops off a cliff about 50 yards ahead.  I chose the foggy path, because I don’t want to fall off the f*cking cliff! Duh!   You see, I was diagnosed with a rare bone marrow failure disorder, that is seen in people who have smoked (oh the irony is strong), been on chemotherapy (I don’t even use chemicals to clean my house, let along inject it in my veins), or been through radiation. The only treatment *known* (I say this loosely as the medical establishment is highly biased by the way of what makes them the most money) is chemotherapy and/or a bone marrow/stem cell transplant.  Neither offer much as far as life expectancy.  So, logically, it’s not a path I’m willing to go down.

 

To come to this point in my life after I spent the last 33 years avoiding cigarettes like the plague, declining to toxify my body with alcohol or any substance, and certainly not partake in any questionable toxic things, is proof alone that no matter what, God is running this whole show.

So here’s the test in life. 

You may avoid all the “bad” things, but things really, truly are up to God.  It would be magical to be so cut and dry as to say, “if you don’t do any bad things, you’ll live a super long, healthy life.”  Nor is it guaranteed that if you do jump in and do drugs, smoke, etc. that you’re going to end up sick (though your percentages do drastically go up).  

 

I watch people eat toxic sh*t they’re entire life, without a care or thought about what they truly are putting in their body.  I see people poison themselves daily with carcinogenic crap, and they couldn’t care less. People have somewhat benign ailments that they complain about, yet they can easily recover if they just took care of their body without adding more to the problem.  The amount of people I see eating fast food, on daily prescription meds, or smoking their precious breath away is so alarming and infuriating.  It’s no wonder the health of our population is declining, and at an crazy fast rate.

 

It’s really not up to us at all.  God has your life in his hands, and He chooses what journey we’re supposed to be on.

 

But then there’s people like me.  The people who have a purpose and a voice in this world, whether we see it yet or not.  I’m not completely sure what this journey is meant to show me or the world, but I do know God has a plan with all this.  The best thing I can do right now is to share this experience with everyone, so that if I can touch even one life for the better, then it’s worth it.

 

I truly believe I’m on the path toward better health, and I will get to see the day that my daughter graduates, goes to college, gets married, has children of her own.  

 

But let me leave you all with this little nugget.  If you know someone who has any health issue, small or large, reach out and just say hi and that you’re thinking of them.  They may seem okay, or like they’re making it through, but I guarantee their struggle is 100 times worse than they’re revealing to you or anyone publicly.  We don’t want to show how broken (or scared) we feel at the moment, but a simple recognition, a call, a hug, can really heal ones spirit deeply, which in turn helps our bodies heal.

 

True human interaction can heal.

 

Purely,

 

 

HEAVY METAL, ROCK CHICK

Third times a charm.... that's what they say, right?  I've written this blog post now 3 times, and each time the browser shuts down and I lose all my writing.  If this makes it up, just know you're incredibly special/lucky to get this update at all! ha!

So last update was a few weeks ago, and since then we've had more test results.  Starting off with the skin, my docs were interested to see if the Sweet's was gone, and had morphed into something different because of how different things look now.  So we sent off all my biopsies and blood work to THE top dermatologist in the country for his opinions.  After he reviewed it all, he believes each sample does in fact have signs of Sweet's Syndrome, so that's likely still the diagnosis.

Now, it may be true, BUT if you saw the difference between how I looked a few months ago and today, you'd be amazed.  Oh, let me show you! (The recent photo is me, on no medications, just my healing regime full of nutritious foods, supplements, mental clarity, and more!)

Ok, so here is before..... back in December 2015

Ugh, it just looks painful to look at this photo.  This is days before my breast explant. Sweet's Syndrome in all it's glory on my chest and face.  Mind you, I had these sores all over my body too.

Ugh, it just looks painful to look at this photo.  This is days before my breast explant. Sweet's Syndrome in all it's glory on my chest and face.  Mind you, I had these sores all over my body too.

And then more recently.....

April 2016 - no steroids, no antibiotics, no pharmaceuticals of any kind.

April 2016 - no steroids, no antibiotics, no pharmaceuticals of any kind.

So yes, there are a few spots here and there.... but can you BELIEVE the difference?!  Proof that something I'm doing is working, right?

 

Now onto MDS updates.  My primary physician tested me for heavy metals a few weeks ago and we received my results back. No, my blood's not rocking out to heavy metal music, though it should be!! (*head bangs*)  I have toxic levels of Mercury and Cadmium in my blood. (So actually my blood IS rockin' out to the heavy metals, but it's not as cool as it sounds) We did this test unprovoked, meaning I did not take anything to draw the metals out and dump them in my blood to register on the test.  This was just a sitting blood test.  Can you imagine if we provoked it!?  My levels would be of the chart.

Needless to say, these results are not good BUT it does reveal something shocking.  Mercury can lead to MDS.  It's listed as one of the causes.

I've since begun a metal detox to help get this junk out!

I'm also on the hunt for a new oncologist, an integrative one, hopefully.  When I spoke with my dermatologist last, he mentioned that he had spoke to my oncologist. (The oncologist, dermatologist, and my primary physician have all been discussing/covering my issues so they can bounce off one another)

So the oncologist has said no to any treatment the dermatologist presented, because most will modulate my immune system too much.  The derm did say that IVIG (IV immunoglobulin) may be a great treatment for the Sweet's.  Onco says no.  He proceeds to tell the derm to "just put her on Dapsone and give her Neupogen for her red cells which will drop."

Dapsone is an anti-biotic that has shown to help Sweet's.  So what's the problem here?  Well, if the oncologist took a second to even open my file, he'd see in several places that I'm highly allergic to Dapsone or any sulfa drug for that matter.  REALLY?!  He can't even look at my file before telling another doctor how to treat me?

Done with him. Thanks for the 2 visits, doc.

Anyways, the journey continues....

 

Purely,

 

 

 

NEW BIOPSY, NEW RESULTS

I've become a pro at skin biopsies lately, and even my skin is on board with healing incredibly well. (My skin pushed out my stitches from my last biopsy! ha ha)

I had visited the dermatologist about 3 weeks ago, as a check in for the Sweet's Syndrome, but I mentioned to him that the lesions I had now looked different and felt different than before.  He agreed and decided to take 2 more biopsies as well as order some blood tests to rule out other rare skin issues.  So off to the lab I went for yet another blood draw.

* Side note* for a girl who was NOT a good blood giver (i.e. I would almost always get faint any time I had to have blood taken), I have become a super star patient with all my Vitamin IVs I get and blood tests I have done.  I guess that's the way to cure the fear!

Anyways, I just went back for my follow up on the biopsy and blood results.  Once again, I've stumped my doctor BUT the news is GREAT!  The biopsy results came back with "no features of Sweet's Syndrome noted."  Let me refresh your memory, or fill you in real quick if you don't know about Sweet's Syndrome.  It's a very rare skin disorder, that 30% of the time is linked to MDS or Acute Myeloid Leukemia.  Basically, it has a prominent link to malignancy.  Sooooooo, the tests are currently showing NO MORE SWEET'S....... which I can say with strong conviction that this is due to my diligence in focusing on healing the MDS naturally.  If the Sweet's isn't around any longer, this has a high probability that the MDS is disappearing too (since the Sweet's was linked to the malignancy of MDS).

Ok, so also with these biopsy results, it came back that the lesions I have are a typical presentation of Erythema Multiforme.  Sounds odd, but it's basically a hypersensitive reaction usually triggered by an infection.  Thanks to doctor Google, I found that it can appear if there is a mycoplasma infection, and what's crazy about that, is many women who have their saline breast implants removed that discovered there was fungus inside them, suffer from mycoplasma infections.  See the correlation now?! I had my saline implants removed in December 2015 (still waiting for the lab tests on those to see what sort of microorganisms were lurking in them for 9 years.)  

That's just the biopsy results. Pretty simple, and according to research, should resolve on it's own in about 6 weeks as long as the underlying infection is addressed.  Now, the blood tests revealed something different (but still not as daunting as a malignancy related skin issue).  The blood showed a possible link to something called Porphyria, which is a UV sensitive blistering skin affliction.  The only thing backing this up, is that when I'm in the sun for a bit, my hands start to itch and I notice some skin issues popping up.  This also used to happen years and years ago when I would go tanning in tanning beds (I know, I know - but at the time, the tanning beds healed the psoriasis I had back then!).

So, I'm faced with 2 different possible diagnoses currently. My doctor took another skin biopsy as well as ordered more blood tests to verify either or both diagnoses. 

At this point, I've been feeling better overall, my skin is looking so much better/healthier, and even if I do have these 2 skin diagnoses currently, I'm positive that my natural healing regimen will support healing these as well.

I am living proof that natural remedies DO WORK.  I could not be more excited right now to know that I've overcome Sweet's Syndrome.  Believe in the power of your own immune system.  If you support it, it will support you.  Healthy eating, healthy thoughts, meditation, and a slew of other things are all contributing to my healing, and I can't wait to help you all do the same!

Until next time... treat your body well!

Purely,

DOC, DOC, DOC, DOC, GOOSE!

I'm going to first start this out by saying that my daughter and husband are the most supportive, patient and amazing people for going to every doctor visit with me; my partners through all of this, and I could not thank them enough for being with me at all times.

Many people may look at me and think, "she doesn't look sick." And to those people I say, "thank you!"  There are days when I feel completely fine.  Then other days, I can tell that my blood levels must be low because I'll be light headed, dizzy, and just exhausted.  These days I up my green leafy veggie intake to boost my blood with Vitamin K, Vitamin C, potassium, and all the other great things stuffed in those amazing foods.

Now, if you've read any of my blog posts or have followed any part of my journey, you'd know that I have worked incredibly hard at helping my body heal.  Granted, I had major surgery in December (breast implant removal + capsulectomy), and to see that my body bounced back better than I felt before is a huge testament to my dedication to heal.  The food I eat, the supplements I take, the products I use, the exercise I do, and more... they all contribute to my healing regimen.

So last week I had a slew of doctor visits, and while some were uneventful, others I try to focus on only the positives.

I saw my primary doctor (whom I adore!) and we created a plan of action for when to have my next blood tests done, when to plan for another bone marrow biopsy, and other details.  Next up was the dermatologist (for my Sweet's Syndrome).  I'm finally down to 2.5mg of the steroids for my skin, but those stubborn sores are coming back since I'm getting off the steroids.  The bad part of this is, the dermatologist doesn't have any other options for treating the Sweet's Syndrome at this point.  Typically, they'd taper you off the steroids and put you on some sort of immunosuppressant medication to control the sores.  In my case, the oncologist says "no way!" to the immunosuppressant drugs due to the MDS, so my option at this point is just topical steroids to try to diminish the discomfort from the sores.

Huge bummer that they're coming back, BUT I am happy to finally be getting off the horrible steroids.  This will allow us to get a more accurate read on my blood tests too.  So the next visit was with the oncologist.  While he would prefer that I start on light chemotherapy, he respects my decision to refuse it and go forward with alternative treatments.  He wasn't too supportive on my mention of Vitamin C IV's (not that they're bad, he just doesn't believe there is any documentation to the benefit for MDS), but I have found the benefits outweigh not doing anything, so I will continue.

They did draw my blood at this visit (even though the steroids could alter the results).  Here's where I got bummed.  My WBC, RBC (hemoglobin), and platelets are all low (1.88, 8.1, 80 respectively).  Well, poop.  I have to admit, I was a bit deflated after hearing that, because I was really hoping for higher numbers.  Now, here's where I get a little more upset too - he asked if I had any questions and I mentioned that each time I go to the oncologist (the old one as well), my numbers are lower than at my general practitioner. Thinking maybe it is a stress response that my numbers lower, he snapped saying something along the lines of "oh you think we manipulate the numbers?"  Um, no (but maybe?)

So after I left there, I called my general doc to see if I can get in for a CBC real quick so we have other numbers to compare to.  They could get me in the next morning.  So in less than a 24 hour period I'll have 2 blood draws to compare to.  I won't have the results of the CBC from my primary doc till later this week, but it will really be interesting to see how the 2 compare.

And lastly, today I visited with a geneticist.  My oncologist referred me to her, to do testing to see if genes have any predisposition as to how I showed up with MDS being so young (without prior chemo or radiation exposure).  She drew some blood and we'll have more information on that in about 2 weeks.  I also had her draw a CBC, so we'll get an idea of what my counts are again.  Since I'm feeling better than I was last week, I'm hoping the numbers are up some.

Until next time....

Purely,


BE PATIENT AND OPEN YOUR MIND

Today has been, what feels like, a huge leap into a positive place!  A few weeks ago, I joined several different groups on Facebook relating to MDS.  One was a group focused on healing MDS and the people in it are either diagnosed with MDS or family/friends of someone with MDS.  Without going into too much detail, it's a very depressing page, that I had to hide from my newsfeed, because everyone there is going the conventional route, and the amount of times I read that this disease took another life, was really pulling on my heart strings.

So I searched again for a natural healing group, which for MDS there are none, but there was a natural healing group for cancer in general.  I posted in there asking if anyone had healed themselves from MDS or AML, and I got a few responses from people saying to try different avenues, but no one directly dealing with either disease.

Until today!  A kind lady from Illinois commented that she too was diagnosed with MDS,  and was exploring alternative treatments.  Not but a few minutes later, a wonderful man from Louisiana commented that he healed his AML using alternative treatments!

Hallelujah! I wanted to cry tears of joy for finding someone, anyone, on a similar journey as I am.  I messaged back and forth with both of them for hours today, passing off what treatments we're trying, or what has had an impact on our health.  It is the most amazing feeling to not feel so alone anymore in this, and to "meet" at least 2 people willing to brave this uncharted road with me.

I don't know if you're spiritual or not, but what I do know is that when we ask for signs or send up prayers, it just takes patience and an open mind to see what we need to see, or hear what we need to hear.  After my last post when I was feeling pretty down, I really looked inside myself as well as prayed for strength.  I'm growing my meditation practice, and to see that only 2 days later, I receive a blessing like this.... well, that's proof right there that I'm not alone in this.

We are here for a purpose.  All of us are.  My journey is here to make an impact, and I will do just that!

Purely,

THE HARD DAYS...

Some days are just hard.  I really try to stay positive with my thoughts and actions, especially since my diagnosis, but some days I struggle.  There are days when I ask God, "why me, why now?" I know that I'm placed on this journey for a purpose, and I will do my best to bring that purpose to life and to make change for anyone following in my path.  But that still doesn't change those days when I question it all.

It hits me hard when I see people not caring at all about the food they eat, the vices they have, the activities they partake in, and they get to live without illness.  I see the photos on Instagram of people enjoying every second of their life, out doing fun activities, just living care free.  That used to be me, and I miss that girl.  

I see people complaining on Facebook about the most inane things, and think to myself, "don't they know how trivial that is?" We never know unless we're put in a position to really reflect on what is important and what's not. 

The feeling that your body is letting you down, and you are trying everything in your power to help it, is so hard.  Every day is centered around healing my body. Every thought centers around that. The food I eat, the supplements I take, the IV's I get, the exercise (or none) that I do, the products we use, every single last thing. And I feel guilty for putting myself first in my thoughts.  

I want to be here, to raise my beautiful daughter, so she never has to live life without her mama.  And what scares me the most, is I don't know if that is part of God's plan.  I hate that my daughter isn't getting the best version of me, like she should. I hate that I can't do everything other mom's can, for fear of getting sick, passing out, or who knows what.

When your 5 year old asks you, "mommy, when will you be all better?", it's so incredibly hard because I don't know. It's bigger than just a cold or flu that will pass as it should. 

Deep down, I feel in my gut, that I will overcome this, and will show the world how it CAN be done.

But there is always that tiny speck of doubt. The uncertainty that is life.

Purely,



CLEANSE, CLEANSE, AND MORE CLEANSE

Now that I have a better grasp on my detoxification pathways, knowing about my MTHFR and COMT gene mutations, I feel like I finally am seeing results in my healing!  I've added several more supplements to my regimen, and on top of that, I'm on the second phase of my detox plan.  Detox from parasites!

I realize that we may not all have parasites, and so far, I haven't seen anything that resembles anything alarming during my cleanse, but I figure it's better to be safe and clear out any unwanted invaders that may be lingering.  The first part of my detox plan was colon cleansing.  That's helped out with eating cruciferous veggies and the coffee enemas. (This is also a great liver cleanse, so it's a two-for-one deal!)  So now that the pathways are clear, the next step was to get rid of any parasites that may be feeding on my body.

Like I said, I haven't seen anything (like some people do... thank GOD!), but I have been feeling much more energy and just overall, CLEAN!  It's kinda amazing how weightless you feel after cleansing the body and giving it the nutrients it truly needs, and can process correctly.  

For those wondering, I'm using ParaGone by Renew Life for my cleanse.  Once this round is done, I'll take a 5 day break, then do one more round per the instructions on the box.  I haven't noticed any ill effects, other than the die off/detox crappy feeling a few days in, but nothing I can't handle!

ALSO! I'm super excited to get my website design almost completed.  I've been working so hard on getting this thing put together and not only keeping up with blogging, but adding vlogs, products, and more info to help anyone looking to take on this healing journey themselves, and I can not be more excited!

Purely,


WELL AIN'T THAT A MTHFR

Things have been going great since my surgery.  I'm healing great, my energy levels are great, and I feel "normal" (whatever that really means).  I've continued my high dose Vitamin C IV therapy, twice a week, and just visited with my primary doctor today.  If you remember in a post a few weeks back, I mentioned we were testing me for methylation.  For those who don't know (and don't worry, I didn't know either!), methylation is basically your body's way of controlling everything from stress responses, making energy, all the way to detoxification.   It's kinda a big deal, actually.

So knowing one's status on their methylation genes is actually a HUGE source of information in how our body functions.  Another reason I love my doctor, is she wanted to test me for this after hearing of my MDS diagnosis, my age, the fact that I had saline implants, and knowing that I lead a very chemical free, organic lifestyle.  All of these things just don't add up to make much sense, so our first stop is finding out my methylation status.

To break it down a bit more clearly on why methylation is so important, it controls:

  • gene expression and DNA repair
  • the "fight or flight" response (stress responses)
  • production and use of glutathione (your body makes this to prevent damage to important cellular components)
  • inflammatory responses
  • immune response
  • balancing of the brain chemistry (serotonin, dopamine, melatonin, etc.)
  • energy production
  • detoxification of heavy metals, chemicals, and hormones

So as you can see, methylation is pretty serious, and something our body needs to be working properly on a daily basis.  After my results came back, we found out that I do in fact have heterozygous (from only one parent) gene mutations for the MTHFR A1298C gene, as well as the COMT (catechol-O-methyltransferase) gene.

( I really have to restrain every time I type MTHFR from adding a few more letters and symbols - - M*TH#R F*CK#R  ha ha ha!)

Ok, anyways, so what in the hell does this even really mean?  Well lucky for me (*do you sense the sarcasm yet?) my body has some issues with breaking down estrogens, processing/breaking down serotonin, dopamine, etc, and detoxing too.  Yay!

As my doctor explained more about both of these, things started making so much more sense!!  For one, with the MTHFR, my body has a hard time breaking down B vitamins, and converting them into energy.  When I was in the hospital back in September and they ran every blood test under the sky, my B12 levels were pretty elevated.  They weren't sure why - - but now it makes sense.  My body can't break it down properly, so it just builds up in my system.  Not only B12 though.  I've yet to test, but will be testing for heavy metals in my system.  I know many women with implants who have tested extremely high for platinum in their system.  That is NOT a metal that should be in our body, but thanks to the wool thrown over our eyes, it's a lovely ingredient in the shell of all breast implants.  This then leaks into our body, 24/7, poisoning us every day.

Enough on that for a second though.

The COMT mutation controls the level of certain hormones. COMT helps breakdown dopamine, epinephrine, norepinephrine, and estrogen. Mutations can either speed-up or slow-down this process.  What does this mean? Basically, people with the mutation have a much higher incidence of depression, anxiety, bipolar disorder and others.

I've battled with anxiety for a lot of my adult life!

These genes are like light switches though, and can be turned on and off with different triggers.  The key, now, is to figure out how to turn these off so my body can work a bit better!  For now, my doctor has me on 2 different supplements - Methyl Folate and SAMe

I'm writing a whole other blog post about methylation and these mutations, so keep an eye out for that too!

Purely,


EXPLANT DAY

The day is here! Surgery day!  I have been taking all the supplements my surgeon recommended, as well as a detox protocol to help my body after surgery with detoxing from the anesthesia, pain meds and anything icky left over.  I'm nervous and incredibly excited.  Last night, I laid in bed with my daughter as she fell asleep.  I had tears welling up in my eyes because for the first time it's hit me how real life and death is.  What if I don't wake up? What if this is the last night I get to snuggle with my daughter? What if, because of my vanity years ago, I've caused my body to undergo such a drastic survival mechanism as cancer to fight the toxic crap that is sitting in my chest?

I don't want to sound dramatic, but MDS is serious, as is any surgery.  Yesterday, I wrote out letters to my loved ones, just in case I don't make it through this surgery.  I wrote out instructions for my husband on all our banking/financial info, because I'm in charge of all of that, and if I'm gone, he'll be left scrambling to try to find log ins, account numbers, etc.  I truly try to think positive in situations like this, but the reality of how dangerous things could get, is not something I take lightly.

We arrive at the surgery center at 5:00am, and the nurse is there ready to bring me back to get ready.  I tried to be so strong, so my daughter didn't see the fear I was feeling inside, and I gave her a huge hug and kiss.  I kissed and hugged my husband, and then headed back into the surgery center.  I changed into my gown, hair net, compression socks, disposable undies, and booties and headed out to my bed.  The nurse went over my surgery details again, so I could sign off on everything, and she got my IV started.  The anesthesiologist came in to chat with me a bit, go over any meds or supplements I'm taking, and said we'll be starting soon!

I laid there waiting, nervous, excited, and scared all at the same time.  Finally, Dr. Chiu came in and closed off the area with the curtain.  He took before photos, and marked up my chest to map out what he was going to do.  This is it! Time to go!  The nurse, anesthesiologist and Dr. Chiu led me toward the operating room, and they got me laid on the bed.  As the nurse was placing compression wraps on my legs, I didn't even know what hit me, but the next thing I knew, I was waking up hearing, "We're all done! You did fantastic!"

WHAT?! I didn't even blink, and I'm done?!  AWEEEESSSOOMMMEEE! I WOKE UP!!!

I just remember them bringing me my purse, saying that my husband was out waiting for me.  As they were wheeling me out, I had my phone and was texting my family letting them know I was out.  I remember the anesthesiologist laughing, saying I was the only patient he's seen that immediately started texting after surgery.  Now, I'm not one of those compulsive texters ---- I just honestly was so happy that I woke up, and that I'm alive, that I had to let my parents and brother know I made it! Ha ha!

The next few hours were kind of a blur, and I only remember some moments because of the anesthesia still in my system.  But I do know that this recovery was FAR easier than the original implant surgery. I didn't need to take any of the pain meds, and only took a few Tylenol that day.  I looked back through my phone a few days later and couldn't stop laughing at the texts I sent out, and the nonsensical things I typed! HA ha!!

"I groggy" 

"I made it! Super groggy but hey said I wave model patient!" 

"I'm in recovery now. They said I was s good" "I'm hoped up on drugs!"

Seriously?! hahah Don't text while still on anesthesia.

The staff at the surgery center cleaned and packed up my implants to return to me (I'll be sending them to a pathologist), as well as my scar capsule.  Those went right into the refrigerator at home when we got there, and I went right to the couch to start eating! I was starving! Thank GOD the Dr. gave me an anti-nausea patch to wear, so when I was done with surgery, I was just hungry as a bear!

POST OP APPOINTMENT

So Saturday morning I went in to the Dr.'s office for my first post-op appointment.  He checked things out and I got to see my new/old breasts for the first time. Not too bad!  I had drains put in to prevent fluid build up, so they just gave me instruction on emptying those and keeping track of how many cc's were filling up before I empty.  Other than that, just keep the compression garment on and take it easy.  Easy enough!

Check these out:

LEFT IMPLANT
You can kind of see here in the picture (sorry about the quality, it was taken inside using my iPhone 6s), but there is tissue inside the implant as well as other black specs of only God knows what.  THIS is why I'm sending my implants and capsules to pathology. I want to know what is inside that implant and what my body needs to detox from to properly heal.

 

RIGHT IMPLANT

This one didn't look as questionable as the left, but again it's being sent off as well.


I also took before and after photos of my breasts, just so I had some comparisons. I'll spare you those pics (for now), but I did notice in the photos that my left breast was smaller than the right.  When I weighed my implants here, the left one was lighter than the right, which would explain why it appeared smaller in my chest too.  This along with seeing stuff inside the implant is leading me to believe there was a slow leak, or a faulty valve, allowing fluid to pass inside and out of the implant itself.  Isn't that gross?!  Ugh.

Anyways, I'm healing up nicely and moving forward with detox, healing, and living LIFE!  YES!!!!

Purely,


NEW ONCOLOGIST, NEW OUTLOOK

So a few months ago, I called my original primary physician to see if I could get a referral to a different oncologist, because the one I've been seeing is just not a good match for me. I was able to get an appointment for December 15, 2015, so off to the new Dr. I went.

This visit, though he still confirmed my original diagnosis, was a much better experience all around.  First off, he met with me for over an hour, explaining all my options, explaining the different types of MDS and how I fit within the spectrum of things.  He noted that while I'm in the intermediate group, my blood levels were still high enough not to warrant transfusions.  The fact that I'm otherwise healthy, young, and feeling well is a huge, great sign.  He mentioned that there was no reason for me to jump into chemotherapy just yet, or even a bone marrow transplant.  Though he confirmed that western medicine says the only "cure" is a bone marrow transplant, that journey is long, VERY hard, and VERY dangerous.  For those who don't know, here is a quick run down on what goes on:

  • first you have to find a 10/10 match, or as close to it for your bone marrow
  • then the donor has to agree to undergo some treatment to prepare their body to create extra stem cells
  • the recipient then goes into a special unit of the hospital, that has it's own filtered air, not pumped in from anywhere else in the hospital
  • recipient undergoes 10 grueling days of high dose chemotherapy to completely kill off the entire immune system
  • ***Did I mention you're shut off from everyone during this time too?
  • on day 10, you receive your bone marrow transplant
  • now the doctors watch to see if your body accepts the new cells
  • in a perfect situation, the body accepts it, and will start functioning correctly
  • you stay in the hospital for months, building up your immunity, still shut off from all visitors

The percentages of successful transplants are not exactly favorable.  Many transplant recipients then battle Graft versus Host disease, where the new immune system is fighting your body (since it's now in an unknown body), or what is left of your immune system, if anything, fights the new cells.  So basically you have a battle going on within your body, of cells fighting cells, which then leave you open for infection and all sorts of other issues.  The best option is if you have a sibling that is a match.  My brother was tested and is only a half match (5/10), which is not favorable, so they then head to the unrelated donor search, in the worldwide bank.  So far, I have no matches.

Anyways, so he was just very informative, very conservative in his approach, and told me to just enjoy the holidays.  No need to rush into chemo right now.  He was a breath of fresh air, as far as I'm concerned.  As I left, he gave me a list of other medications they can use to help, and also his personal cell phone in case I had any questions or urgent concerns.  A doctor that gives out his personal cell number is a winner in my eyes.

After I left, he called me to express his concern still, that I was so young and diagnosed with this disease.  It's so rare, that he wants me to visit with a geneticist to study my genes and see why this may have occurred in my young, healthy body.

I already have my suspicions (*cough cough, implants!), but it will be nice to see what else we can figure out.

Whew...... things seem to be a bit more positive each day.

Purely,


CONSULT FOR SURGERY

I've had days to think about my decision to move forward with the Vidaza, and let me tell you, every time it even crosses my mind, I get instant anxiety.  I called the oncologist office and cancelled my appointment with the Dr, as well as all my appointments for next week for the Vidaza treatment.  That one phone call felt like I lifted an elephant off my back and tossed it off a cliff.  I feel lighter!

My Sweet's Syndrome sores are back with a vengeance, and this time I have them on the palms of my hands and soles of my feet.  Needless to say it's incredibly uncomfortable.  Not only that, I know that if it is this active, no surgeon will operate on me, as the incision site will just become one huge sore.  Knowing this, a few days ago I started taking steroids again.  It's honestly the only thing found to suppress the sores, and as much as I hate pharmaceuticals, at this point, for me to have surgery its really my only option.

The other hurdle I figure, is before this consultation, I need to somehow make it look my skin isn't as bad as it is, so the doctor isn't as concerned either with it.  Sometimes, you just gotta do what you gotta do!  

Ok, so off to the consultation I went.  A quick drive over the hill to Beverly Hills, to meet with my new surgeon.  First things, first.  His office, staff, and everything about this visit was perfect.  I felt welcome, acknowledged, and important.  One thing is for sure, he knows how to run his business right!  I first met with Shanna, the lovely lady I had spoke with over the phone initially. She was a doll!  Then I was sent back to the exam room to meet with Laurie, his assistant and then Dr. Chiu himself.  We went over my medical history, he did his exam, and we discussed my request to have a full capsulectomy (which isn't always common with saline implants.)  He was on board!  Though he did not admit that the implants could really cause illness, he was kind and compassionate, and agreed that if there was a chance that removing them could improve my health, then it was the best option.

So we went back into his office so he could show me some before and after photos of clients of his who also had explants.  They all looked great, and I knew this was my surgeon.  I then met with Christine to discuss a surgery date, time, fees, and all that fun mumbo jumbo.  My date was set, December 18, 2015.  ONE WEEK AWAY!  They set me up for my pre-op visit for Saturday Dec. 12 and I needed to get blood work done (the standard pre-op blood work) as well as a confirmation from my primary doctor that I'm healthy enough for surgery.

I left his office feeling like I was floating on air.  THIS IS GOING TO HAPPEN!

I set up an appointment with my primary physician for next Wednesday, and I'll be doing my blood work on Monday.

FAST FORWARD TO MONDAY

Now, some of you may think I'm crazy, but I've always been a math/science nerd at heart.  I learned based on my last blood test at the oncologist, that the menstrual cycle can affect blood levels and blood tests, which could explain my low platelets.  So I pulled all my previous blood work, as well as my cycle, and mapped out in a graph to see if there was a trend in the numbers based on what day it was in my cycle.  According to my graph, the closer to ovulation, the better my blood levels were.  So, lucky me, Monday happened to be a great day to get my blood work done as it fell on day 10 or so of my cycle. So this combined with tons of prayer, I headed into the lab to get blood drawn.

The wait for these results as well as the sign off from my primary doctor felt like an eternity.  Blood results came back the next day.  White cells were within the NORMAL RANGE!!! Red cells were just slightly lowered. Platelets were over 100 again!! OMG.  Thank you God!

By Wednesday, I met with my primary physician, who reviewed my labs, past labs, and everything leading up to this.  She's always been on board with me having my implants removed, and she was so happy to hear that I was going to be able to have this surgery.  She signed me off as cleared for surgery.

I could not be more excited for surgery! I'm happier to get these toxic bags out than I was to get them put in the first place!

Freedom is coming fast!

Purely,


IS CHEMO THE WAY

After my last visit with the oncologist, I felt pretty defeated.  Not only did my blood tests upset me (my white count was low, red was borderline anemic, and platelets were in the 50's again), but I felt so pressured by my oncologist to start chemotherapy.  As he put it, I was "playing with fire" by waiting for treatment.  I was so torn with what to do, because I'm very against chemotherapy and the damaging effects it has on the body.  To know that MDS is caused by chemotherapy and radiation, it's so hard for me to think that chemotherapy is the answer for treatment. I mean, have you seen the caution/hazard warnings on chemotheraphy, or the fact that anyone handling it has to wear a hazmat suit when it's being made?  THAT going into a vein in my body, does NOT seem right.  After discussing with him, he admitted that the chemotherapy will not cure, nor help the MDS, but merely "maybe" prevent it from progressing into Acute Myeloid Leukemia.  Thus, enter my "fear" mode again, when he starts throwing around those terms.  Should I start on this chemo?  Is that the path I'm supposed to take?

I still feel in my gut that it's not.

I scheduled myself to come in for the 5 day treatment of Vidaza, the chemotherapy that's been recommended and the only thing approved for MDS. December 14th, would be the first day.  This does not feel right.  It's going against everything I have read about building the immune system.  My immune system needs support right now, not to be beat down.  I have so many thoughts, emotions, fears right now, and I just don't know which path to take!

So with that set, my search for a surgeon to remove my implants was still on.  I emailed back and forth with Dr. Edward Melmed, one of the nations top plastic surgeons who recognizes the dangers of implants.  In fact, he no longer implants woman - only explants!  I emailed him with my true situation, bad blood work and all, to see if he felt I was ok enough for surgery.  After a little research, I also found out that his son, also living in the Dallas area, is a hematologist/oncologist (the exact Dr. I've been dealing with here for my MDS!).  What are the chances of that?!

Dr. Melmed was so kind in his email, but was concerned about the borderline anemia.  After we discussed further, he gave me the "ok" and to chat with his office staff for scheduling and such.  A glimmer of hope has returned!  I may get to have these things out soon!

The earliest is February for him.  Ok, taking that in consideration as well as the travel costs, hotels, and more, Melmed may be out of the reality of this.  Then I got to thinking. I live in Los Angeles, only 20 minutes from Beverly Hills where the nations top plastic surgeons practice.  There has got to be a surgeon nearby that is skilled in explants.  So my search continued.

I googled, read up, saw before and after photos, and read philosophies of countless surgeons in the Southern California area.  One really stood out from the rest.  Dr. Gabriel Chiu, is an O.D., and a plastic and reconstructive surgeon.  His accolades are a long list of amazing-ness, and his reviews are excellent.

I nervously made the call.  From the moment I started my conversation with the receptionist, I already felt like this was my match.  She was warm, welcoming, and made me feel like I was "home."  That may sound silly to explain how a doctor's office made me feel, but in this vulnerable state I'm in, I'm going by gut feelings for the most part, and this one feels right.  I set up my consultation for December 11.  The day can not come soon enough!

Purely,


NATURE'S CHEMOTHERAPY

I have been feeling so great lately. Better than I have in months! I haven't been dizzy or light headed. I've had energy, and feel normal.  I don't look normal currently as my Sweet's lesions came back with a vengeance on my chest, face, arms and neck.  I finally got in to see my regular doctor to start my Vitamin C IV infusions, and the first one went fantastic! I felt great, and the added bonus was after about 2 days, the lesions on my chest are starting to heal. Slowly, but anything is progress! Also, we're testing my methylation to see if my body can detox properly, and I will be doing a blood test to check for all sorts of things like plastics, benzene, heavy metals, etc.  These 2 tests SHOULD offer a better picture of what's going on.

So since I've been feeling well, I called my oncologist to see if I could get in for a blood check to see where my levels were at.  Now, I don't know if deep down I was nervous or had anxiety, but I psyched myself out and keep the positive thoughts going on the way to this visit.  Once I was there though, my heart was pounding, I was short of breath, and dizzy.  It almost felt like a panic attack coming on, but it shouldn't have been! I was feeling great prior to this!

They drew my blood, and I laid on the table in the room waiting my blood test results.  I felt like I was kicked in the stomach when he told me my white cells were basically the same, red the same, and platelets were lowered.  What?!

I have been working so hard on my treatment.  I'm eating only alkaline foods, taking immune boosting supplements, drinking chlorophyll, taking papaya leaf extract, yoga, rebounding, and more all to help myself naturally.  Now, the only thing that he mentioned could affect this result today was that I'm about to start my period (TMI, sorry) which could affect my platelet count.

I'm going to go with that thought, but at this point, I need to re-evaluate my treatment plan and come up with something more aggressive.

The huge problem I have with all this is, the main suspect that I believe is causing all of this are my implants.  My surgeon is concerned with my platelet count, and wants the approval of my hematologist before surgery.  My hematologist is concerned about my wound healing time and the time it may push me back before starting chemotherapy.  Here's the thing... I don't want to do chemotherapy.  So I feel stuck.  It's basically like having a huge thorn sticking out of your side, and the doctors will only treat your symptoms (pain, infection) without removing the cause (the thorn).

I have such a strong gut feeling that if we remove the implants, my immune system can then bounce back and start to work properly to detox from these horrible chemical filled toxic bags.  I MUST keep the positive thoughts and move forward.  On to find a surgeon who will take these things out for me!

Purely,



IS AUTOIMMUNE TO BLAME

Today I finally posted in the Facebook group I joined for MDS support.  I had joined, but unfollowed the group, as the posts that filled my newsfeed were really depressing and bringing me down.  So I checked back in with them, and asked if there were any others close to my age that were diagnosed (since everything I've read is people in their 60s or so.)  To my surprise, there were a few (hey! I'm not the only 30 something year old!), and some parents of children who were diagnosed. That broke my heart even more. No child should have to endure the stress of a disease like this.

I then asked if anyone knew of any cause for their MDS, other than previous chemo and radiation from another cancer battle.  Many MDS cases are linked to previous chemo, so I figure those are pretty self explanatory.  The main reasons that came up were the previous chemo/radiation and benzene/xylene exposure.

One post really caught my eye though.  She mentioned that she'd read a possible link between autoimmune disease and MDS.

A light bulb went off in my head!

Ever since high school, I suffered with psoriasis. Like, bad psoriasis.  Through the years I was treated with topical steroids to control it, but what really helped it clear up almost completely was changing the products I was using (no more antibacterial soaps, chemical filled lotions/soaps, etc.) and my move to California. I attributed it mainly to probably allergies from pollens in Texas and the products I used, that aggrivated my psoriasis.

In my previous research on the affect of breast implants causing illness, I came across a great study done by Dr. Susan Kolb, where she discusses the presence of the genetic or HLA type, HLA-DR.  She states that a small percentage of patients who become ill from their silicone or saline breast implants, and have this HLA-DR gene, and they can be highly reactive to silicone exposure with an immediate and different reaction, primarily autoimmune in nature.  Also that rashes and elevated ANA could be present.(1)  Along those lines, I also found that HLA-DR is also involved in several autoimmune conditions, disease susceptibility and disease resistance. (2)

Now, knowing this, I have a positive result from my bone marrow biopsy that I do in fact have the HLA-DR gene.  This proves that I have a high percentage of having a reaction to silicone exposure, as well as autoimmune disease.  It's already been proven to me, since I've struggled with psoriasis.

Could this mean then, that with the HLA-DR gene, the previous autoimmune disease, and the silicone exposure would make me a prime suspect to develop MDS?  Since I have the HLA-DR gene, could the implants have just triggered an immune response that in turn started causing my DNA to show aberrations like the 7q- that I have with my MDS?

Dr. Kolb goes on to show that the research from Harvard and Mayo that led to the FDA re-approving silicone breast implants, did not identify a direct causal link between implants and any known autoimmune disease.  She does point out that they do cause new autoimmune diseases that have yet to be categorized or discovered by medical science.

So now knowing this research is out there, and you know I'll continue to search, it's opening my eyes to a much clearer picture of how this could have occurred in my, otherwise healthy, body.  After finding out the carcinogenic ingredients in implants, mixed with implanting them in my chest wall, when in fact I never should have been allowed to if they had tested for the HLA-DR gene prior to implantation, it's no wonder my body/immune system would start to malfunction.  I was likely pre-disposed to something like this, and the years of toxic chemicals that my immune system has been fighting have become too much for my cells to attack.

Also, I found on the MDS Beacon website, an alternative theory. They suggested that genetic and/or environmental factors that make patients susceptible to autoimmune diseases may play the same role for the development of MDS and AML.(3)  So the fact that implants can cause autoimmune reaction/disease, would support that they can also cause MDS.

To top it all off, I've battled with anxiety for about 13 years now, so the constant state of being stressed didn't help my immune system. The fact that anxiety will suppress the immune system likely just made it like an open door for disease to walk right in and make a nice cozy home.

Well guess what disease? You're getting evicted.

Purely,


TRAPPED

As we were leaving this last doctor visit, we asked my hematologist/oncologist for a copy of what he sent over to the plastic surgeons office for insurance.  Reading through his notes, my heart dropped.

"Prior to starting treatment however patient insists on having her breast implants removed; she is convinced that the toxins in the silicone solution is the cause of her MDS despite our conversations to the contrary, and she says she will not have peace of mind until they are removed; I advised her that pursuing the removal now as opposed to start treatment for her MDS immediately she risks progression to Acute Leukemia which could rapidly be fatal; she is aware of the risks and wishes to have that done first."

What in the hell. I am livid that these doctors would make me sound crazy, that I'm "convinced" the implants are the cause.  Let me back up a little bit.  Doctors for the most part do not know a true cause for MDS, aside from previous chemo/radiation and certain chemical exposures.  Other than that, the causes are "unknown."  So, if they are unknown, how can a doctor without a shadow of doubt say to me, the implants are not the cause?  Even the plastic surgeon agreed they need to come out, along with the capsules, to help my immune system recover and work properly.

Later that evening, I get a call from my plastic surgeon directly.  He sounded concerned and voiced his concern regarding the severity of my hematologists notes.  He says he was unaware of how serious my situation is (I don't believe it's as serious as the doctor is explaining), and he's concerned about my platelets causing excess bleeding and such.  I completely understand his concern as a surgeon, and after we discussed, he wanted to talk directly to the expert at the cancer hospital to get her input, since she herself said if I was going to do this, it needed to be done in the next 2 months.

I made a call out to her, and after speaking with her, she says my white cell count is ok so much that if I have an infection, my body will be fine to fight it.  My platelets have come up enough that bleeding shouldn't be an issue.  Cool! So call my plastic surgeon please to discuss.  She says to have him call her on Monday and they'll talk about it.

Fast forward to Monday morning.  My surgeon calls again with concern in his voice.  He and the oncologist think it's best I do not do the surgery and to start chemo immediately. They're concerned about my healing time, and that it will delay me starting on chemo.  Fuck.

He will not do my surgery. Dear Lord, please give me the positivity to move past this and seek a better route.  After many tears and frustrations, my wonderful husband assured me that just because one door closes, doesn't mean there aren't many others to walk through.  That's just not my path right now.

To be honest, I felt so crushed. Like I had no control over what health care I wanted to receive. I feel trapped.  Being forced into an option that is NOT one that I will take, is not a good feeling.

So, I took control, got a referral for another hematologist/oncologist who will hopefully listen and be my partner in fighting this disease, not one to just shove their decision on me with no other options.  I'm searching for another plastic surgeon who will perform my surgery when my blood levels are at the right point that it will be safe. I'm also searching for a naturopath or holistic doctor who has worked with cases of MDS so I'm not out on this journey alone.  I'm not completely against western medicine, but when they start shutting doors on my wishes, and try to control my health, I'm not happy.

Moving onward with positivity. My new mantra I tell myself all day, "I am healed. I feel great. I feel better than I ever have."

And that is what I believe.

Purely,


A GLIMMER OF HOPE

I had set up a consultation with a plastic surgeon nearby that is highly recommended  for his precision in explants. Explanting is the removal of implants (in case you weren't up on the lingo).  I felt like this was my life line. This will be the beginning of my healing journey. Once these toxic bags are out, my body can begin to truly heal and fight for itself!

We met with him and discussed my health as it stood currently.  The only blood tests I had to go by were the ones taken last week at the cancer hospital, and while my white blood count and red counts were good, my platelets and dropped dramatically. They were at 55 last week, which is low, and cause for concern, but not low enough for transfusions.

I assured the doctor that they would be higher this Friday when I go in for another bone marrow biopsy, and they will continue to raise so I'll be ok for surgery.  He let us know his concerns, but did want to see what is found on the new biopsy and go from there.  My husband and I felt good with this doctor, as he addressed all our concerns, and he himself was very professional and cautious (rightly so) due to my current condition.

Fast forward to a few days later, I had another bone marrow biopsy done and now my blood counts were even better! My platelets were raised up to 86 this time (see I told you doc!).  We had to wait another week for the follow up to hear the results of this biopsy, but lucky for you, I have the results right now!

The newest biopsy showed that there was no progression (what they were worried about with my platelets being so low at 55- I'll expand on this in a bit), and actually there were a few less blasts in my bone marrow (that's a great thing).  So while it still confirmed MDS, it wasn't getting worse, in fact was looking better.

High five to myself for believing and working HARD on my nutrition, supplements, stress management and more to heal myself.  Now, about the platelets being low.  It seems as though conventional doctors often don't take into account situations that may cause medical readings to be off.  Sometimes they do, like with blood pressure, but in the case of my platelets, they saw they were lowered and immediately went to a negative place.  I, on the other hand, did a little research after the fact as to what could lower platelets.  Stress was a big one, and that day we went to the cancer hospital was one of the highest stressed days I've ever felt.

Not only that, there were some food choices I was making, while they are extremely good for your body, also act slightly as blood thinners which can lower platelets. Garlic, Echinacea, Ginger, and grapes were some of the things that I was taking to help my immune system, that could have reflected as a lowered platelet count.

Either way, things were looking a bit better, and I was proud of myself.

Purely,


HOPE OR HOPELESS

The entire drive out to Duarte, my stomach was doing flips. I was anxious, unaware of what I really was about to see.  My doctor had told me he just wanted me to visit with one of the best Hematologist/Oncologists in the country. One who has done the most stem cell transplants.  So I agreed, at least for a second opinion from one of the top doctors.

When we arrived, I was immediately depressed, seeing tons of people walking around, in various stages of health. Some missing some of their hair, some all of it, and some with face masks on.  All were wheeling around their IV drip with them - their "life-line".  Oh my greatness, this was unreal.  I don't belong here. I'm not one of them. This is a mistake.  I wanted to leave right then and there.

My husband parked the car and we headed into the information desk.  The gentleman there was kind and lead us to a waiting area, which we were swiftly called into a small office.  This woman was handing me paperwork to sign, taking co-payments, and then hands me a wristband to place on my wrist.

Hold up!

"I'm just here for a consultation with the doctor, right?" I asked incredibly nervous with the whole situation. It felt like I was being admitted into the hospital!

"Correct. That's just for identification." she said.

I gave my husband a timid glance, and we continued on with the paperwork.  She handed me a huge folder of reading material and then my own badge to use "each time I come in".  Holy shit. I'm not coming back here lady (I wanted to say to her).

She then calls for a volunteer to guide us to the lab so they can take my blood tests.  Ok, normal enough. With all my recent hospital and doctor visits, I've become quite the pro at blood tests.  You wouldn't even know that before all this, even the thought of needles would have me feeling woozy.

I head into the lab and they take a couple vials of blood. Then guide me back to the waiting area for another volunteer to give us a mini tour.  Mind you, there are still gravely ill patients walking around, with hopeless looks on their face.  I can not even begin to really describe the magnitude of sadness I felt at this place.  I wanted to grab each and every one of them and scream, " You do not have to do this to yourself! There is another way!!"

So off we went, where we were shown we would come back at 1:00pm for my appointment with the doctor.  We had about an hour to kill, so we went to the bistro and got some snacks and drinks.  I chose a table outside, because it was the least sad place to sit for an hour.  We make our way back to the waiting area, and I'm called back to talk with the doctor.

When she entered the room, she seemed quite cold.  She basically said that the test showed exactly what my doctor had told me, MDS.  She said I was in the intermediate group, and that we needed to test my brother to see if he was a match for me for a stem cell transplant. In the meantime she wanted me to start on some medicine.  I asked her point blank, "Is it chemotherapy?"  And her response was very passive, "well, not exactly, but kind of."  What in the hell? Either it is or it isn't.  I glance at my husband in aggravation.  We mention to her our concerns about my breast implants.  That the toxic chemicals in them could be contributing to the MDS or hindering my immune system from fighting.  She wasn't convinced either and sort of passed it off.  At the end of our visit though, she said that if I wanted to have the implants taken out, I needed to do so within the next 2 months.

As we were finishing up, she said I needed to go back to the lab to do more blood work to test my HLA type so they could match me with a donor.  What in the actual hell. I wanted to leave as fast as I could.  I argued with my husband, on the verge of tears that I was not going to do another blood test and I was not going to have the stem cell transplant, so this was all a waste.  Looking back now, I was on the verge of a serious panic attack.  He assured me, that I needed to just do this last blood test and we'd leave.

I sat there so uncomfortable in my own skin, wanting to run from this place.  This "hopeful" place was the last place I would ever tell anyone was filled with hope.  I felt defeated and not in control (and I HATE not being in control).  Finally, they called me back for the HLA typing blood test, and then I was out of there.

So relieved to be done with that visit, promising myself I never wanted to go back there.

Purely,


MDS IT IS

So now I've had some time to do more research on MDS, and I've also armed myself with a lot of information about treating cancer naturally, so I'm prepared mentally for what the doctor has to say.  I know in my heart, that if this is the case, I will heal myself and will continue living my life with a new found respect for what we can overcome if we stay positive.

The day before this follow up, I spoke with the dermatologist regarding my skin biopsy results.  He told me that I had something called Sweet's Syndrome, and though rare, it made sense with what was going on with my blood levels.  He had spoke to my hematologist/oncologist and they've come to this conclusion. He prescribed some corticosteroid, and said it should start clearing up the rash within days.  So back to google I went, to find out more about this skin syndrome.

Sweet's Syndrome is incredibly rare as well (yay, lucky me!.... *said in a very sarcastic tone*), so there is not much known about causes other than medicine or malignancy.  It's seen more commonly in cases of leukemia.

Also in my week of research (seriously, I spent so much time on the computer it was ridiculous), I kept coming back to information leading to illnesses brought on by breast implants.  In 2006, I underwent breast augmentation with saline implants.  This makes them 9 years old, and the expiration date was come up soon at 10 years. (Plastic surgeons recommend swapping out or removing implants around the 10 year mark, as they're not lifetime devices).  I found medical articles, books, and all sorts of information showing the toxicity of the silicone shell (multiple carcinogens), mold and fungus growth inside the implants, and just a general autoimmune response to the foreign object in the chest wall.

How could I be so blind not to realize the seriousness of implanting something in my body, and not expect there to be consequences?  I was informed (so I thought) of all the possible contraindications of implanting, and I was willing to risk those at the time of surgery. Now on the other end of things, my body is freaking out inside and I need these things out of me! At the very least, they're suppressing my immune system and not allowing it to function as it should.  Even on the FDA website, they show that implants can cause lymphoma, which is cancer of the lymphatic system, which is a big part of your immune system.  You know what else is a big part of your immune system? Your blood! (Specifically white blood cells)

Back at the hematologist/oncologist office, he comes in to tell me that indeed, the findings were correct and that I do have MDS.  Everything he said was so matter of fact, and the seriousness wasn't really felt, other than the treatment he wanted to start me on was chemotherapy. I brought up my concern about my implants and pointed out some facts I had learned through my research.  He was not convinced, nor could anything I had to say make him think otherwise or even the slight bit compassionately towards what I was now facing in my life going forward.

He wanted me to head out to the City of Hope in Duarte to meet with one of the top doctors who has done the most bone marrow transplants and dealt with MDS directly.  I felt like this was probably a good idea, since it is so rare, that seeing an expert may ease my mind some and give me hope.

This was far from the truth.

Purely,




WHERE IT STARTED

On October 8, 2015 I had a follow up appointment with my hematologist/oncologist to find out the results of my bone marrow biopsy.  Up until this point, it’s been a huge question mark as to what was going on with my health.  Let me take it back a few months…

Around the end of June, I had scheduled a regular annual check up exam, at which time I noticed some bumps on my forehead, that looked a bit like acne so I thought nothing of them.  My doctor received my blood test results and noted that my white blood cell count was low, but due to all the other levels being normal, that the skin ordeal and low white count was likely due to food allergies.

I’m no stranger to food allergies, after living about 20 years of my life completely red meat and dairy free due to allergies. So I tried the elimination diet, and nothing changed.  The bumps on my forehead later turned to strange sores on my nose and cheek. Nothing too gross, but definitely not acne.  I went back for more blood work to check on my levels, and my white blood cells were still low.

During this time, I had made an appointment with a dermatologist, who was clueless to what my rash was (which had now spread to my back, chest, and some on my legs). He prescribed an antibiotic saying it was likely just folliculitis, and sent me on my way (without a skin biopsy).  Well, a short while after, I was running a fever, had horrible sores on my tongue making it almost impossible to eat without being in intense pain.  I went to the emergency room, as I was getting worse, fast.  They ran all sorts of tests, thinking maybe I had Lyme disease or something of the like.  All the tests came back negative, and the doctor there just said to continue my antibiotics.

I had a follow up with my primary care doctor, at which time, she told me to stop the antibiotics because clearly I was allergic to it.  She prescribed a different medicine that should clear up my skin.  Within 2 days after stopping the first antibiotic, my tongue was getting better, so thankfully we did discover I was allergic to it.  The new medicine I started, and within just a couple days I started getting hives.  They were all over, and travelled from one place to another. It was miserable!  I emailed my doctor and she said to just stop that medicine completely as well.

So, getting extremely frustrated, things were getting worse, and again my blood counts were low (mainly white counts).  So we decided to head back to the emergency room to see if they would admit me and run all kinds of tests to finally figure out what was wrong.  This time, they did admit me.  I spent 3 days in the hospital and had blood test after blood test, yet still no one would biopsy my skin.  My blood tests kept coming back negative for all sorts of ailments and diseases they tested me for, and now this time, my CBC (complete blood count) showed lowered white, and platelets.  I met with an infectious disease doctor, a hematologist, and a primary physician while at the hospital.  Each one was stumped as to what was going on, but they all agreed a skin biopsy would be the easiest route to tell us exactly what was going on with my skin.  As for the blood counts being off, the referred me to another hematologist/oncologist for a bone marrow biopsy.

Back to present time…

So I’m waiting with my husband and daughter to find out the results of the biopsy.  My doctor came in and said that what it looked like from the biopsy and aspiration was something called Myelodysplastic Syndrome (MDS), however he wasn’t convinced that was the case.  Typically, this disease affects people over 60, and very rarely someone my age.  Since this was the first I’ve heard of this, I didn’t exactly know what we were dealing with, so it wasn’t too scary of a diagnosis.  He wanted me to come back in a week after they’d reviewed the lab work and sent it in for further testing.  Fair enough, I figure they’ll review it and rule out this elusive MDS.

I had a skin biopsy done as well, and we’re waiting for the results for that.  In the meantime, I began researching MDS and quickly came to the realization that what we were dealing with was quite intense, and now…. I’m concerned.

Purely,

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