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 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

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.