THE JOURNEY part II

        

          The Road To Here

  If you haven't read part I to this post you can start at the beginning by scrolling down to the next article since I'm unable to remember the link set up-sorry. Then meet us right back here to get caught up with everyone else to just where things are in my world of  Cancer land.

In the midst of this cancer storm I am standing, am believing for complete healing from Jesus Christ, the healer and patiently awaiting the manifestation of that total divine miracle healing! I'm excited, no ecstatic about that! I know it's on its way, I have my hand up and in His perfect timing I believe I will see it. (details in the previous post as to why I'm so confident about that)

Here's the thing though, this could be the most difficult time for me to publicly make this stand. For me spiritually, I believe it's the most crucial time! It didn't just happen or come to me in story form and I jotted down my thoughts, no. This was planted deep within me a couple years ago by my Heavenly Father, through grace testing me, producing a hunger for truth, feeding me, teaching me and finally when it was wrapped up as truth and flowing through my very blood veins and interwoven into every cell of my body, I began to say it as fact. No more "ifs" or "hopes," no it is fact and truth in my life. 

I remember the first few times I spoke those words out loud to friends. It didn't quite sound like I thought it would and definitely 
wasn't heard in the way I had hoped. No one got excited or made much of it at all. But of course with loving support there was always a quiet agreement rendered. 
I get it! It's not an easy road to walk nor a very comfortable place to stand. When you're being a little on the radical side of life when has it ever been though? For every missionary who ever said they were going to some remote country to preach the gospel, I imagine they met with that similar quite support. What can someone really say back to, "God said,?"

Well, God did say, so many times, through His infallible word, through His leaders of today and to me, His child who has been bought at a very high price, with that precious blood that His faithful son shed for us on his journey to the cross, being brutally beaten for our transgressions and then hanging there for what must have seemed an eternity. Being naked in front of his family and friends, being ridiculed and mocked..I could go on..but I won't today, but you can read it for yourself in 
Matthew 27:27 of the Holy Bible. 

 I have spent most of my life trying not to envision the events of that day because when you really think of what he went through for us it's so hard to comprehend. But his great love for us won out over any doubts He may have had. That's where I had to get. I had to know that this is Gods will, I had to know what I was accomplishing and I had to be at a place where nothing else mattered and my eyes were set on Him and His great plan for my life. 


Honestly, I thought this post was going to be more about the medical side of what's going on right now, but that isn't what was on His mind this morning. Not yet anyway.. today is day #5 of my radiation treatments and I want to share some of that info because so many are going through this and you know, not one single person is prepared for that. I mean, how could you be? I will be back and explain what, why, and where soon, I hope you'll join me. Thanks for reading and I'd love to hear your thoughts and comments. 

Hugs,
Joann

The Journey

My journey  has been one of mixed roads and paths that have lead me to where I am right now. One thing that I have found and am in awe of is the constant grace that the Lord has extended to me to find myself here. Here, obviously a good place to be. Even so, I press on toward more and even higher ground. 

Just today God has enlightened my mind and so my very life with His love and mercy by speaking to me through His word. This living and breathing book that I cherish and treasure speaks to me daily, but sometimes there’s just this special breath that has breathed and its now a message to the very core of my being; a message that I can choose to incorporate deep within me or let it fall to the ground and slip away. Not the latter, not today!

If you’ve ever stood and believed for something, been desperate with no other hope except a miraculous move of God then this is for you. If you or someone you know is in the fight of their life, but wondering where God has been then you are exactly who I’m supposed to share with today.

Being diagnosed with terminal cancer 4 years ago set me on quite a rocky path, but has lead me to a deeper relationship than I ever thought possible with my Lord and savior Jesus Christ. I was no stranger to faith and had exercised my beliefs often, especially for my children and loved ones. I’m not sure why it’s easier to believe for someone else than for yourself, but that’s what I found when faced with a case for either God to intervene or to meet Him face to face at heaven’s gate.

Surprisingly for me, this journey would take me all the way back to the foundation, to the beginning of what do I believe and why before I could truly stand and say, “I believe!” To go forward, I had to go backward first. Trust me, backward is not a place you want to be. I guess it’s that wilderness place that everyone encounters at some point. I think my wilderness was the driest desert that ever existed and I’m quite sure I spent way too much time finding my way out of there than was necessary! Even so, I learned much, grew a lot and am so very thankful when I look back I see two sets of footprints in that sand. I wouldn’t have ever made it out had He not held me up.

The worst part of finding your true faith is the doubt and unbelief that attacks you. I actually encountered the enemy seething words at me that it’s not true, that it’s not real and that there’s not any hope for me. In times of weakness I was taken down by these thoughts and that lead to deeper drought of the Holy Spirit in my life. When you have no faith it’s impossible to please God, without God there is no hope.. and the vicious cycle continued. I had to make a stand, I would have to take that stand and never look back.. 

“I believe!”

I believe, but… does God really love me enough to heal me? I believe, but.. God didn’t heal “that person, or this person, so why would He heal me?.. I believe, but.. is it even His will to heal me..

I knew one day without a shadow of doubt that I was healed. God spoke to me, breathed His healing breath upon me and I will not let that be stolen from me. It wasn’t an instantaneous healing though and my body has not shown the manifestation of His promise, though I patiently wait with anticipation for that day.

In the meantime, in the waiting, I have found the most wonderful and beautiful encounters with Jesus. His love and mercy continue to wash over me daily and I wouldn’t trade what I’ve experienced with Him for any amount of healing. The showers of refreshing are always in the waiting, it’s when you are expecting and hoping, putting your trust and faith in nothing but His promises that you can look into His eyes and know His pure love. Without having received that thing that you want because you’ve realized that’s not what you really want, you just want Him, only need Him..

“Who is this coming up from the wilderness, leaning on her beloved? 

I awakened you under the apple tree. There your mother brought you forth; there she who bore you brought you forth.

Set me as a seal upon your heart, as a seal upon your arm; 

For love is as strong as death, jealousy as cruel as the grave; its flames are flames of fire, a most vehement flame.

Many waters cannot quench love, nor can the floods drown it. If a man would give for love all the wealth of his house it would be utterly despised.”                 

    Song of Solomon 8:5-7 

So gently and sweetly He speaks to my heart from Mark 9:23-24.                            

My Jesus said,

 “If you can believe, all things are possible to him who believes.”

“Immediately the father of the child cried out and said with tears,

“Lord, I believe, help my unbelief!”

Honestly, I couldn’t believe my eyes, couldn’t trust my ears. I’ve read these verses so many times and quoted the scriptures, but I had not ever grasped the truth of what Jesus said and why.

Earlier in the passage, verses 14-18 we see that this father had watched while the disciples tried to cast out his sons demon that he’d had since childhood, but they could not. Not only had they failed but the demon had put on a big show in front of everyone foaming at the mouth and convulsing. Because of their failure the father had lost hope and was struggling to believe. He wanted to believe Jesus, but he’d been shaken, his faith had been attacked and he’d seen the power of the enemy right before his very eyes.

But, Jesus said, 

“If you can believe, all things are possible to him who believes.”

So, the father chose to believe Jesus, not what he had seen or heard and his son was delivered! Now, this is faith! I have to admit, my faith had been shaken by what I’ve seen around me and by what I haven’t seen. I’ve compared myself to others and thought if they didn’t get healed why would I? But, that’s not truth. Truth is Jesus said that all things are possible to him who believes! I believe! Just because it wasn’t true or didn’t happen for someone else doesn’t mean it won’t happen for me! The enemy is stealing our faith by demonstrating his lies in front of us and we set our eyes on that instead of the truth of the gospel!

What about His perfect will though, how do we know that He wants to heal us? There seems to be that small voice in the back of our minds reminding us it might not be His will. How can we be sure? Well, this is what my Bible says:

“Now this is the confidence that we have in Him, if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.”  1John 5:14-15

So, there’s this confidence that we have and there are these promises that most all of us are believing and standing on. I know for me, Psalm 91 has been one of my go to declarations and I believe those words are for me, do you believe?

“He shall call upon Me and I will answer him; I will be with him in trouble; I will deliver him 

and honor him. With long life I will satisfy him, and show him My salvation.”                    Psalm 91:15-16

God’s salvation includes deliverance, health, welfare, prosperity, and victory! This word salvation also comes from a word that includes avenging, defending, preserving and rescue! These are His promises to us; this is His will for us- long life and health! 

This is our petition, this is our confidence:

“…who Himself bore our sins in His own body on the tree, that we, having died to sins, might live for righteousness- by whose stripes you were healed.” 1Peter 2:24

Either all of the word of God is true and the scriptures are to be believed or none of it is. I have to take it all, believe it all and if I believe I must stand on that truth and not be swayed or look at the tricks of the enemy. Everything else is in the hands of God.

I hope and pray for you that in the waiting you find strength, that you experience the deep love of Jesus and that your prayers are answered according to His great love for us! It will take a real and deep encounter with our savior to take a stand and not be shaken, but oh the joy and love once we’re in that place. 

“I believe!”

Blessings,

Joann Walters                                                                       

2/01/19

When it's terminal

I never thought much about what the word terminal meant until it was literally standing right in front of me and jumping up and down on my life! For once I didn't feel the term "ignorance is bliss" was such a cheesy thing to say. Being told I have stage IV non small cell lung cancer already at an advance stage AND IT WAS TERMINAL was honestly the worst day I'd had all year or maybe all decade or even in my life, but it's really too difficult to compare your calamities in a time like this. If you've never been there, please don't judge! Well, even if you have been there.. seriously, don't judge. Everyone deals with life and hem hem.. death very differently. There is no one size fits all or even a reference book on how to live with a terminal illness.

I have discovered since I heard those horrifying words that many people think they know how you, or as it is- me, should live out my days with this death sentence hanging over me. Sadly, some think they know how you should or should not be doing it. These same people with this infamous wisdom also are the ones who feel they can invoke on you just how and how not you should be "living." Ha! Tell me it isn't so, please! If I'm facing dying and I don't know how to act what makes someone who is not holding their mortality in their hands think they have even an inkling of an idea?

I'm baffled, what about you? The one thing I am not doing is coming down on people for being people. We're all in need of constant forgiveness and I for one, extend that gracefully to all more readily than ever these days. Believe me when I say, it's NOT 
easy, but it must be done. (The grace and forgiveness part if that 
wasn't clear. YIKES!) 

Too often I'm hearing of people being wounded in there ill condition. Too many trying to figure life out for them, assuming and presuming, giving unwarranted advice that they don't even have experience in or saying pat answers that sound pretty but don't even apply. It seems there's more talking going on by the so called friends than listening. Believe me, I know it must be difficult to hear, but sometimes we just need a sounding board, someone to let us voice the thoughts rolling around in our head. Just a friend, not someone with all the answers. 

A little advice, be gentle, be loving and listen with your heart.. spread joy, spread peace; but don't sweep the fact of the matter 
under the rug. There are many stages of grief as most know and dealing with a terminal diagnosis puts a person right at the top of that list and working down the page. 

I'd like to tell you a little about how I came to be living this 
terminal life and just how long I've been preparing to die. You know, everyone is going to do it, don't you? So why is it so very difficult to accept when you know it might just be this month or 
this year or before another Christmas with your family? Why is it that having this glimpse into your future brings you down on your knees and into a fog of depression instead of making you more 
joyful and trying to experience everything and to be there for 
everyone?

You would think this information would unleash a deep desire for 
fun, laughter and recalling great memories that make you smile and bring you joy, and it can- depending on what stage of the grieving process you happen to be in and your current circumstances.  Instead it can bring some deep depressing thoughts and quiet times of tears and reminiscences of mistakes and disappointments. What 
can I say? It's just how it is.

I'm thankful that I can quickly turn from those dark moments and give thanks for what I have had and praise God for what He has done. For this is surely truth: my past, present and future are all in His loving hands. Everyday is different though; whether you're facing a terminal diagnosis or just trying to live your life with the normal ups and downs, life can be hard. I'm learning new meaning to some things that I used to think I understood. In the coming days I hope to share some of those things with you.

In the mean time I'll leave you with some words that I turn to when the world is closing in and the whirlwind is upon me:

"Finally brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything  praiseworthy-meditate on these things." 
                                                             Phillipians 4:8 

Love, joy and peace to you and yours!
Joann

Clinical Trials... (no turning back)

I've heard and read many things about clinical trials. Unfortunately, most of it has scared the socks off me and made me want to stick my head in the sand and not know anything else about it. Maybe it's the unknowing part, the guessing game part as it appeared to be that gave me cold chills and caused a mild hyper-ventilating state of being to come over me? I'm not sure, but I never intended to be one of those clinical trial guinea pigs and may have even declared that very thing in one of my nightmares some time ago. But as life would have it, things change, we change.. circumstances change.. a few simple words like, " we don't have any other treatment options for you.." coming from my oncologist completely changed my thoughts and especially my hopes for clinical trials! Cancer truly does change EVERYTHING!

Honestly, over the course of this journey and the on going digestion of as much information on the new technology in the cancer world, I had already begun to soften on my opinion of clinical trials. I believe somehow our minds are programmed to immediately reject anything new. Let's stick with the old and the usual and what we've always done. Well, for me sadly, all of those options have been tried and proven themselves obsolete and useless in my fight against this deadly disease that continually finds a way to  grow faster and smarter than the good old medicines that we've always used. Medicines, that I might add have not been doing a very good job of healing much less of curing much cancer.

So, if there is a chance of a cure in a medicine that hasn't been discovered yet then sign me up! Actually, I just signed up and recently took my first dose of  a very new drug that is not FDA approved but allowed only for investigational purposes. In fact, though it wasn't a completely pleasant experience, it wasn't near as awful as my many weeks of hugging the toilet among other side effects after chemotherapy infusions.

You may be asking, what is a clinical trial all about? Well, I know very little more than you at this point, but the short answer to that question is that it basically is a research study of a drug that involves people. My trial is specifically for people that have NSCLC (non small cell lung cancer)
with a positive EGFR mutation. This is a rare form of lung cancer that mostly targets non-smoking young women, but of course no one is exempt like any cancer.

I don't know how I will respond to this drug, what other issues may arise or if this is the drug that my heart and family long for, but I do know it's part of my fight and I am definitely fighting!
Yes, It's a little scary. I don't know what to expect and there hasn't even been very many before me to receive this drug to be given any kind of list of what to expect. Strong protocols are in place though. This isn't my docs first rodeo by far. My oncologist is keeping a very close eye on me with weekly labs and vitals, monthly testing on specific organs that seem to be sensitive to the medication and of course quarterly scans to get a look into just what those little dark cells of evil are up to. Hopefully they are dying very dramatic and painful deaths nano-dozens at a time even as I'm writing this sentence. I can envision it, can you? If you happen to find yourself in a similar place with not many options and have any questions I'll do my best to answer them.

Im hopeful, I'm continuously prayerful and even if this is only a step to get me somewhere else, I'm at peace and look to my Father in heaven to lead the way. Blessings to you..

             

          "... and lo, I am with you always, even to the end of the age." 
                                                 Matthew 28:20

ANNIVERSARY #3

Unbelievably to me, it's been three long years of living in Cancerland for me. When my journey began I didn't have even the slightest clue of what I'd be going through and the kind of things I'd experience. Today, I feel that I've seen it all and am quite the veteran cancer patient, but honestly, I believe that I'm not really that close to knowing even a fraction of the knowledge of all things lung cancer much less other kinds of cancer. Considering my chances of even still being alive today were so very slim I do have to say I'm not complaining about a thing!! Just thrilled to be here!

Recently, in the infusion waiting room ( that's the place you wait until it's your turn to get your chemo or where your loved ones have to wait for you) as I was waiting to be called back to get my chemotherapy cocktail this particular morning, I overheard a young woman sharing with a small group of us a little of her journey. Something that happened to her has really stuck with me and I feel I should be her voice today. She knew she had cancer but did not know it had begun to spread, which is called, metastasis or metastatic cancer. She began having tooth pain and was convinced that due to the treatments she had cavities that she couldn't see. She had a CT scan and it hadn't shown any knew tumors so she returned to the dentist convinced the continued pain in her mouth was cavities and she could no longer live with the discomfort. She wasn't sleeping and couldn't eat so she begged her dentist to remove 2 teeth that she felt were responsible. Unfortunately, this didn't take away the pain and she set another appointment to remove 1 or 2 more teeth; whatever it took to get rid of this unrelenting pain.

Once she told her oncologist what had happened and that she was having more teeth abstracted he sent her for a head MRI to look for another culprit and sure enough the cancer had metastasized to her jaw and was causing the pain in her mouth and not any amount of dental work was going to fix it. I was very sad for my new friend and for what she was going through. Of course her next step was some rounds of radiation along with the chemo but thankfully it took care of these tumors on her jaw.

I can say that I'm glad to be here today and thankful that my path has deviated from some of the places that fellow sojourners have been forced to travel. For me, I've been up some bumpy roads and down a few torrential drenched and gulley lined streets.  The truth is that every single illness, though some of the facts may be very similar, the story itself will vary greatly from one another.

I guess today that is the thing that I want to make crystal clear if nothing else makes sense to you.
I have heard so many people trying to make the connections between two people's particularly different journeys. There just isn't much comparison. Even if the exact same type of person, say the age, sex, type of cancer, where it is, diagnosis and even prognosis began at the same time fighting their battle as someone else with everything the same, it would never stay the same and quickly you'd have many differences that would require different decisions on treatment and or surgery and of course the outcomes would always be different.

For you, my message would be; treat everyone and what they're going through as an individual,no matter if it's cancer, their love life hurts or even finance issues. Love them where they are and listen to their heart. Most of all, pray for them, take their crisis serious because even though they may be acting strong they may actually walk away from you and cry the whole way home. (Yes, you guess it; that's me on many occasions)

Thank you for listening to me today, blessings to you! And don't forget to spread a littl love and show an extra dose of compassion to someone who doesn't have it all together..
Love ya,

Jo

The Rollercoaster Ride

Changes. Yeah, they come, they go and even that changes! 
 Lately for me, they're as subtle as a quick turn, then a jerk to the left, a sudden dive down ending with an upside down out of control spiral on a very long and horrifying rollercoaster ride.
You know the huge ones at a theme park that hold you in place and threaten to keep you hanging indefinitely, but just when you think you can't take another sharp curve or another over the edge dive into the unknown... it lets you go for just a second. You think you must be safe and for just a split second you realize that in these moments you better catch your breath, you should gather your composure and fix your hair, because there isn't a glimpse in sight of what's coming next. But you know it's coming and you know you might escape with your life, but also in reality, you know there are no guarantees, there are no promises, no contracts signed and sealed for your benefit.
This is the cancer journey. This is what's called, "the fight." If you are, like me, on this journey you know exactly what I'm talking about. If you're only on the outside and looking in then thank the good Lord above and please sit back and listen to the words of one woman's late night musings of what it's sometimes like:

It's just you up there, at the very top of that roller coaster ride. The one that looks out across acres and acres of that park. From this view you can see it all and it's so beautiful, so hopeful and as those huge trees clustered together on the west side of the park stand strong with branches extending in all directions you notice how they've nearly reached the sky. Or maybe they did reach the sky and melded into it somewhere between the heavy brush and the transparent turquoise air with its puffy white clouds that shapeshift so carelessly as they float into the distance, never looking back or divulging the hideous things they've seen. There are hundreds maybe thousands of other souls who are just where you are in a way. They're back on top of this ride, teetering from side to side and trying to keep the balance daring not to even exhale a breath. You wonder for a moment if they can see it, are they looking out past this moment, this destiny, at the beauty all around as the colors of the skies explode into one another as the sun melts its tangerine warmth and it oozes with the peacock and becomes a magnificent bouquet of lavender. Or are we all missing it with our eyes focused only on ourselves and the hell we're going through? Who would blame us, right? At that thought I sit up in my seat and lean as far over the edge as I can hoping to smell the sweetness that must be there... in the sky almost touching me, but not daring to come that close. I long for more and realize that I may never see it like this or breathe in such a rich fragrance ever again. I'm on top of my world, but as curiously as I came to be here within a blink of an eye there is a faint gasp and a breath that I come to know as my own and once again I'm plunged into the depths of unchartered territory; the unknown but the inevitable.

So you take in that gulp of air and you stare out into the distance. You glance up to the skies and just as if you thought you'd have more time to gather together your life, your loved ones or even the pieces of a past that you didn't want to fall apart, but it did anyway. At that very moment when the reality of it all hits you and you want to go back, to get off of this ride, but no one can hear you calling as your voice struggles against the whirlwind and your throat is too dry from the screaming. Your eyes fill with the watery tears that are so very familiar these days and this unforgivable rail car begins to propel you forward on a ride that you never wanted to get on. Without dignity or an ounce of grace it throws you down another spiraling rail as you're left gripping the cold handlebars in front of you, your back plastered to the uncomfortable dank metal that's digging into your wind burned skin. Your legs are tense, but your feet are planted firmly and deliberately, it's just become an unconscionable habit lately. You will take whatever it is that is thrown at you, you must stand strong. You must stand and never give up.

In a moment your off once more, in the blink of an eye it starts all over again. The dark circles under your eyes are just a fraction of the ugly reminder that you've been here before, that you've ridden this beast, that you've encountered it's wrath and that you have its memory burned deeply into every cell of your unrecognizable shapeless thin body. The body that used to carry you where you wanted to go and was eager to run and laugh and find joy among the living. Today this body, with its imprint of the pain, the loss, the fear can only hold on. Hold on it must, for the ride is long, taking you to heights that you've never known before and thrashing you down at a speed you should never have to endure. Like this roller coaster ride, a journey not intended for the faint of heart, there is no stopping, no way to get off and though you've been told where you'll go and how you'll get there you never could have imagined that this journey would take you here and it would cost you more than you ever knew you could pay. Still you go. You plant both feet before you, straighten your back and raise your chin to address the enemy face to face. Though your dark empty eyes tell a story that no one wants to hear and your mind plays tricks on you as you try to sort the facts from the truths, nevertheless you stand for war and when you're knocked down you get back up and fight again.  It's only in the stillness of the black night when no one else is there that you allow yourself to cry and the wet tears fall like rivers, water rushing from a depth within you that you had forgotten existed and then you let the waterfall empty itself once again.

So many unanswered questions, such unbelievable words that are never allowed to be spoken. And your shaken to the very core at the honesty that you must share even if you're the only one who's listening. But in that darkness, far enough away that it's hidden on most occasssions, you sense someone there, someone reaching for you. As you allow your heart to sink into the depth of that black abysss, you know the familiar warmth that embraces your body and soul tonight. You remember the things that you've heard and the words that have been spoken. Do you dare to hope in the midst of this chaos, do you hope to fight another day or are you done? But, it is His voice and it is His presence and He holds you in His strength once again. And you believe the words that He promised you even though it doesn't look the way you thought it would, the way you were told that it would, but that doesn't mean it's not true.

Deeply, you inhale, breathing in the hope and exhaling the fear and He calls you His child, He knows your name and reminds you that He will never leave you nor forsake you.
Knowing it to be true as ripples of memories flow through your mind; all the many times that He was there in the dark, in the stillness when you felt so all alone and you know He'll always be there.
The darkness subsides as you climb down from the horrible ride tonight.. you allow the one who is strong enough to bare your burdens take the next watch of the night. With shaking hands you dry then close those weary eyes, breathing many deep sighs and fall asleep dreaming of a better place, of a better time and you rest there...

"Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you. "

                                                                                                         Deuteronomy 31:6

HAPPY ANNIVERSARY TO ME!

I can't believe that it's been a whole year since my dreadful diagnosis of Stage IV Non Small Cell Lung Cancer! (NSCLC) It's been quite the journey with many mountains to climb and valleys to wallow in, but it's actually been better than I first anticipated. Well, as good as you could ever expect when you have a terminal disease that happens to call itself cancer.

The journey

It was November 5th 2014 a day that I will never forget. Sitting in the pulmonologists office after an abundance of testing over five weeks to find out exactly what was wrong with me and what these spots on my lungs meant. Finally, hearing the dreaded words: It is CANCER. Then even worse than that; it's stage IV. Until that moment I did not really know that it could be worse.  I never knew what those numbers meant before or had taken the time to find out, but somehow I did know that there isn't a stage V. That really sucks and this can't be happening to me!

Treatment

Chemotherapy started and it was just downright horrible; a nightmare of a way to go. If I must go I'd rather not spend my last days sprawled out on the bathroom floor or so sick in bed that I wished I could move to get up to go to the bathroom floor... Darned cancer, it's full intent is to strip one's dignity along with your energy and enthusiasm. And if that doesn't take you out just wait until your treatment gets a hold of you!

EGFR positive.. what?

Somehow I survived my first round of chemo and found myself bright eyed and bushy tailed sitting in the oncologists office 3 weeks later begging for more of the poison that I hated so much. To my surprise I had passed the genetics test that showed I had a rare form of lung cancer mutation called EGFR positive and qualified for a Targeted Therapy Treatment. Ah, no more infusions for the time being, THANK GOD!  I was told to go home and take my new chemotherapy in the form of a pill called Tarceva. Tarwhatta??  Take it everyday no matter what and be happy... I should have been suspicious when I looked up and read the details of the EGFR mutation. It stands for Epidermal Growth Factor Receptor, the key word here being EPIDERMAL! Ha! Reminds me of the joke from elementary school when we first learned about having epidermis. Remember? We'd tell people that their epidermis was showing? It's not so funny now. My epidermis hurts!

 Special Effects (as we call it in Tarcevaland )

Happy was not so easy... It made me nauseous, it made everything I ate go straight through me, I ached, I was fatigued and  it made nearly my whole body break out in the most hideous rash that I have ever seen! And dang it, that itchy rash was in the mirror starring back at me! My skin became so dry that it would crack and bleed along with my fingers and feet. I've never applied so much moisturizer! (hence the Epidermal part of the mutation)

Months passed and the horrible rash toned down to just nasty rash. I got the skin splits under control for the most part with constant applications of coconut oil.  My hair thinned in some places more than others and I was a little sad when I realized how limp and lifeless it had become. Most people on this drug lose some hair, but not usually all and I was thankful for that. I kept hearing stories, but kept believing them to be rumors of new hair growth that will resemble a brillo pad. I couldn't grasp what was meant by this and no one talking about it was showing any pictures. Imagine that? ! Around my 7th month just as promised I became severely (and grossly) aware of the "unusual" hair growth, which is what all of the pharmaceutical material called it. Very unusual, yes! I now understand the brillo pad description and will NOT  describe it to you. It's not just the hair on my head that grows strangely though. My eyelashes now have to be trimmed regularly so that they don't touch my glasses. I'm using waxing products on my face that I've never had to use before and the hair on my arms is very.. different. Oh, well.. just another regime to add to my daily "to do list." Take 200 pills, trim and brush eyelashes, wear head band to cover hair loss and lather on body lotion 10 times a day. Okay, I've got this..

How could I be happy?? I don't even know if this medicine is working. Nonetheless,  I woke up and took my pill everyday, I lathered antibiotic creams on my rashy face, took antibiotic pills for my rash and then took more pills for the nausea and for the digestive issues.. Anymore pills ya want me to take?? Well, yes there's a few more. My tumors are positioned on nerves and causing terrible chest pains radiating through out my upper body. I'll take more pills for that.. thank-you, thanks a lot..

The Fight is On

As time went on I became used to the regime and all that it included. It wasn't my idea of a "happy" life, but it most definitely is LIFE! Within six months the tumors were reduced to mm size and there was no cancer activity; the targeted therapy is working! (I'll keep taking that pill!)

 I learned quickly what the phrase "Fighting the battle" really means. The battle is many things and the fight is dealing with them everyday.  Sometimes fighting the battle means that you roll over in bed and go back to sleep and deal with the battle tomorrow.. Sometimes the battle is raging inside of me. Sometimes it's everything on the  outside and the fact that it all looks different today and it won't ever be the same for me. Living with a terminal disease is something I never expected. One thing I know for sure though; the fight is on!

Happy Cancerversary!

 I'm very thankful to be standing here today and enjoying my cancerversary. At one year I continue to be stable and continue my treatment and regular scans and tests. I do know that it could have gone the other way and I would have missed this great celebration. But since I'm still here for an undetermined amount of time I'm celebrating today, looking forward to tomorrow, hoping and believing for many more wonderful days and years. Thanks to all of my family and friends who have been there for me, supporting me and praying for me through it all and a very BIG God who isn't finished with me yet!

Targeted therapy. WHAT??

 Congratulations!! I passed the genetic tests! What the heck you and I are both asking, right?
Well, I've learned a little about all of this, but it's so foreign to me that I'm still overwhelmed at this point. They are telling me that my chemotherapy ride has been cut short and I now qualify for targeted therapy treatment. Yay??

What in the world is targeted therapy treatment? I have found that most people don't even ask. Their head turns a little sideways when I tell them of my treatment and I can see the wheels are turning, but no. It does not compute.

Cancer treatment is supposed to mean that you go in to the oncology department once a month or so and get hooked up to an IV full of poisonous hardcore drugs known as chemotherapy, right? Then you go home and get sick for a few days or week and then you're better until you're next treatment. You loose ALL of your hair, are usually pale and get those dark sunken eyes. That's just not how it usually is in the real cancer world! I know it's difficult for everyone who thought they knew anything about cancer and especially it makes it so much harder to detect the people who are sick!! I look gook, well, I look ok, so I must be doing well, right? N0, not right.

With all of the new discoveries and new treatments available, the face of cancer treatment has changed. Don't hear me wrong. There is still a multitude of infusion chemo treatment going on out there. It's still a viable source for treating and helping cancer patients. The thing is; there is so much more now and it's a good thing!

What is targeted therapy treatment, you ask? Oh! I'm so glad you asked! Let me tell you about the wonder drug that I take for non-small cell lung cancer. Ok, so I won't tell you everything. I can get started and it's so very interesting to me it's hard to stop, but I know the average person just wants the short list.

It starts with the way they are able to do genomic testing today. Which is wonderful  for the fight against cancer.  That in itself is sooo very exciting. Especially for someone like me who has a specific cancer cell that has gone haywire, mutated from a normal cell into a bad cell and caused all of this in the first place. What?? you can get lung cancer if you don't smoke, you ask? Yes! If you have lungs, you can get lung cancer.

What's genome, you might ask? Genome is the full set of chromosomes or all the inheritable traits of an organism. Simply said, it's genetics. So, they know how to test the genetics of the cancer cell now and there are a handful of specific mutated cells that have been identified and they were able to create a particular medicine to fight it. This process is called a "targeted therapy". The medicine targets those specific cells as bad cells and kills them. You might think, great! You just do your 5 months of treatment and then your cured? Well, it's just not that simple. As we know, cancer is this thing that very seldom really goes away. We all know someone who was diagnosed cancer free after there treatment to only find out some years later that it's back again. My belief is that it never went away. It laid dormant in the body somewhere, maybe just one tiny minute cell, until it gained enough strength and reproduced or even mutated into another deadly army. It is just like your worst enemy. Actually, it IS my worst enemy!

Okay, okay.. I promised the short list. First of all, every single cancer is different and is treated differently. Every patient is different and should be treated individually. There are many different targeted therapies out there and many more still in clinical trials. It depends on which cell has been affected. My type is known as EGFR positive. The E stands for epidermal meaning that my skin is involved. It stands for Epidermal Growth Factor Receptor. The E part is so important. The drug I take is called Tarceva (that's the easy name to pronounce) and it causes a multitude of side effects in all areas of my epidermal constitution. They say that's how you know it's working, but I'm not so sure about that. 

The good thing about this treatment is that it comes on strong to reduce tumor size, works hard at immobilizing any active cancer cells and usually does this fairly quickly. The bad news would be that you have to take the drug every single day as long as it is working. If you stop all of it's hard work would be undone and the cancer would be able to reactivate and grow quickly and even spread with it's new found strength. My oncologist said about 10 times at one of my appointments, "Take your pill everyday." This was the appointment at about 3 months of this therapy where the CT scans showed that the tumors were nearly gone. I guess he didn't want me to go out and celebrate by taking vacation to the beach and taking a vacation from my chemo medication. Sadly, that's been done.

You now know almost as much as I do about this new cancer treatment called Targeted therapy.
Well, everything except the details of the horrible side effects that began within days and nearly drove me to the edge, but about that time my body began to adjust and it's not quite as extreme.
I still deal with daily side effects, or "special effects" as those on Tarceva like to call it.

Even with all of the side effects raging through my body I'm extremely thankful to have been able to be on this type of treatment. It's truly a wonder drug and I'm thrilled to now be considered in remission. There is no sign of cancer activity and my tumors are mm sized. My last Pet scan was beautifully "unremarkable" as the radiologist stated in the detailed report. A statement I will embrace and look forward to hearing again. Unfortunately, this treatment has a bad reputation for only working for one to two years. As soon as we have signs that it's no longer effective it will be back to the drawing board or rather the testing sites to find out what the next regimen will be. Until then, I'll embrace life; love my loved ones and make sure they know it, live as though there is no tomorrow and do the things that have meaning. No one knows how long they have on this earth, but I'm learning to deal with the statistics that I've been given and make everyday count. I hope you do the same.

Lung cancer sucks..

My sweet 11 year old grandson has been so strong and brave for me over the past 5 months since I've started this journey. He cried with his mom behind closed doors after my diagnosis and is always quick to help me with any chores around the house. I know he can't even comprehend what it all means, but somehow he knows deep down how to be supportive and loving even when he'd rather be playing.

This week I've been watching the cancer movie: Cancer: The emperor of all maladies.
Joseph has sat with me several times for as long as he could. We both shed some tears and talked about what it all means. It was a great opportunity for him to ask some of the questions that I'm sure he's been wondering about.
He's been told that "Noni" has the bad kind of cancer, but I think that some of the parts in the movie really drove it home for him as he asked me if I had "that" kind of cancer as they showed the patient in the movie could not be cured and had died.

Tonight, while I finished the last of the recorded segment of part 3 he sat with me, but also had his laptop and was working on a new project that he just started. He has just learned how to "edit" because he wants to be able to put certain things on YouTube and this was necessary. He told me, " I HAD to learn how to edit." I think this child could do anything he wanted to!

As we were watching the show he began making a banner for me with his editing software. He asked me questions and had me pick out a few of my preferences, but he put this brilliant piece of artwork together for me. This little guy makes my heart so proud and overflowing with joy. He makes it all worth while, they all do.