Ain't No Grave!

A couple of weeks ago, my daughters and I had a rather terrifying meeting with my oncologist. In our hopes of having him give us the information of his plan in action due to the new PET scan results, we found something very disturbing. He has had me waiting on a clinical trial since October; waiting with no communication other than testing dates and locations from staff. In my attempts to deal with the worsening of pain and other symptoms I was failing at getting acrosss to them that things had changed and something needed to be done. Obviously an ongoing problem between doctor and patient, but it needs to stop. We depend on our medical staff to have our best interests in mind and fighting for us, hoping for the best and always looking for the best treatment options, right?

I have studied diligently and continue to update myself and keep myself up to date, which I feel is very important when you're dealing with a severe chronic or terminal disease. I dig to find out what all those test results mean and what they mean for me. I ask a multitude of questions and take all that information in stride. It is truly amazing the difference in how each of those medical staff will answer your questions. Some are a wealth of info and helpful and some just see you as their very short lived patient that they may never see again and won't offer much. I really feel for people who cannot comprehend this new and transforming medical society and all the different treatments and protocols, very sad. They many times are solely depending on their doctors and nurses to do it all. Some are blessed and that's what happens, but I think I see way too many people on the social media pages asking and even begging for answers that they left that doctors office without. It makes my heart hurt.

In this particular meeting we were blindsided and had no idea about what my doctor felt until he was pushed for a plan to combat the increasing and ever growing tumors that have riddled my body and severely multiplied just since November according to this PET scan report! He doesn't see that there is ANY treatment that is going to work! Even the clinical trial that I don't qualify for because of the unstable condition of brain metastasis that has crept in.

BRAIN METASISIS

Due to an MRI that was part of the pre-qualification protocol for the trial, we learned in November that I had 10 brain tumors with one being large and in dangerous placement in my brain stem. There's no room for that kind of foreign entity there so any growth can cause serious issues. I was immediately put on hold for the trial and referred to radiation therapy.

December was full of simulations, tests and finally a one time high dose of pin point lasers delivering radiation to the exact placement of the tumors. And then there's those lovely side effects.. yuck, it was unpleasant though necessary, then the waiting.. of course.

I was totally unprepared for the results of the standard 30 day MRI: too quickly 7-8 more tumors had arrived (most likely already there but not large enough to be seen at the time of testing) and these received none of the radiation that had been lasered in. A
new plan had to be formulated, obviously the pin point technique was not going to stay ahead of the spreading going on. This calls for, you guessed it! More testing, more simulations, more uncomfortabl mask molds and Whole Brain Radiation...

In the meantime, these technical plans take time to formulate, it's hurry up and wait for weeks, but this team realizes that I'm dealing with so much more than just brain mets and order the colorful PET in question here. Seeing these results and then hearing of my new symptoms of numbness and tingling across my face, my lips, tongue, roof of mouth and down my right arm to my fingers, severe lung pain, muscle weakness and joint pain they expedite the treatment and get me started! Truly looking out for my best interest- thank you doc!

I'M NOT DYING!

In this meeting then with the original oncologist he is completely disconnected with what is going on. As my daughters push him for answers he raises his voice and lets them know that this is the circle of life, just how it is sometimes and there's always palliative care for me! These words are like splinters of hopelessness to me and completely unknown and foreign to these young women. Once we explained what this actually means I could see the realization of horror across their faces.. no one should ever be spoken to in that way and hear of a possible fate for their mom like that! Bad form doc.. I hope this to be an isolated case and not the norm for patients. I understand the beauty in palliative care when its time, but IT'S NOT MY TIME and I'M NOT DYING!! (and if I were, don't tell my children in that tone, please.)

Does it go without saying that we walked out of that meeting without an oncologist.. and I quickly declared to my girls that I was NOT DYING!

Heading to the parking deck I checked my phone and found a notification for YouTube.com and was overjoyed to see the very timely post from my church! Someone had my back, someone was listening and in tune.. that person had just in that short time posted a song from our anointed worship leaders that I needed to hear! I needed to declare and push way down in my spirit to take the place of those words of death and hopelessness! As soon as I was situated in my car I plugged my phone into my stereo, found the YouTube post and turned it wide open, played it over and over all the way home singing to the top of my HEALED LUNGS!! (It's HIS Breath, He breathed into us.. HE chooses when that comes to an end! No one else has that power, but we can foolishly give it over to them by becoming into agreement with their thoughts.) THEY don't KNOW MY GOD!!

 I HOPE YOU ENJOY!! 

AIN'T NO GRAVE!!


LOVE, JOY AND PEACE, In HIM!

JOANN

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.

a little cancer...

CANCER. I have that. Sometimes I have to stop and re-grasp the reality of it. Yesterday, I was healthy, well, active and living. Today...  I have stage IV lung cancer; inoperable and incurable. And the worse part of hearing those incomprehensible words was hearing the voice in my head saying, (the realist within me) "there's not a stage V, is there?"

Seriously? Well, that's what they tell me anyway. I don't think I'm quite fully on board yet. The first round of chemo was very convincing though. I almost decided that a quick death may be far more doable than another 2 weeks with that poison in my body. A little like childbirth; at the end of  each pregnancy. I think I always questioned whether I was ready for the inevitable delivery. Like it mattered if I wanted  the pain and discomfort that it would most assuredly bring and whether I was ready or not! Cancer somewhat reminds me of that. However, there are no steps for what to expect each week or trimester with every single type of cancer and treatment being completely different. Cancer is quite the inconsiderate beast! No rules. No guidelines. You never know what to expect. It almost seems as though that is the monsters very intention. It's way to suck the life and hope right out of you. It's definitely scary, but mostly it makes me mad. (when I've had the energy to be mad, anyway) Mad and determined enough to want to win this fight. There's just too much at stake not to win.

And so, my "fight" with the beast begins. I do see why they call it that now, a fight that is. Before, I used to picture people with cancer standing very firm in place. I imagined them with hands up, in a boxers stance, being strong and not letting any of it get to them. As far as I can tell in my short experience, that's not the typical cancer patients reality. In my short 4 weeks after diagnosis my fight has been mostly with my insurance company, flighty doctor offices, inconsiderate medical personnel and then my own frustrations, disappointments, symptoms and treatment. That's where the fight is, that's what consumes me and haunts me. Well, those things and the fact that my life will never be the same.
In a day... everything has changed.