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

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.