Wow, why is it that I have not blogged since JUNE?! I suppose being busy with Believe In The Cure is a good excuse J
This entire journey has really transformed me in ways I never knew possible. Me, Jo, the gal who always controlled every minutia of my life, was handed a life plan where Step 1 is to let go of the control. There is no control in CLL. Zero. Zilch. The only thing I can control is how I look at my life and learn to peacefully live with this. Although, up to this point, I have felt pretty much in control of every aspect of it (as long as I had no symptoms and blood work was normal) because I was in remission and running this fabulous successful-becoming charity!
Well friends, guess what? This girl, yeah me Jo, lost all control last month. I LOST IT and had many, many moments of weakness because of some darn persistent lymph nodes that WOULD NOT AND DID NOT go away after my cold symptoms went away.
Uh oh…not in my plan. Not in my control. What the heck? Why won’t they go away? I mean, I have had other colds and those darn things never showed up and the only time they were ever present was when I was going through all this junk 5 years ago. Guess what happened to this girl? I got scared, really scared and was really not ready to face it again. Even though what I preach is acceptance, I was really conflicted with it at this time. Maybe I can’t handle it. Maybe what I have been telling all my Believers is a bunch of garbage? How can I be such a hypocrite and not follow my own advice? Here we go again…doubt, fear, doubt, fear…and ANGER.
So, I went to what I know, what I do when crisis happens. I prayed, I told my dearest friends that I was scared and feeling so weak, I cried, I hugged my children more and more, I lost a ton of sleep, and I called Dr. Flynn.
What I found out by having this scare is profound and a lesson that I will never ever forget.
I made the appointment with Dr. Flynn and usually when I see him I jump up and give him a big hug. Not this time. I couldn’t even bring myself to smile, almost like I was afraid to disappoint the guy who is responsible for putting me in remission. I wanted to beat those statistics and make him proud and I was ashamed because I was certain I had come out of remission.
I cried as he felt around my neck and felt the lymph nodes. I will never forget this next series of events: He sat down, logged into his computer, pulled up the results, and they were NORMAL. What? Are you sure it’s today’s date? Please check again and again. Oh my gosh, I drove him nuts. The look in his eyes when he said they are normal meant so much to me. I saw relief, assurance, and sadness all at the same time. Relief for obvious reasons, assurance for obvious reasons and sadness because he knew my struggle and fears and most likely wished I would find peace with it.
I have found peace finally. Peace because I have learned acceptance. Peace because for the first time I actually understand my disease. Here comes the education aspect of my blog. Remission does NOT mean a cure. I expressed to Dr. Flynn that I can live with it coming back and I know how to deal with that, but I can’t live with or deal with the constant fear of it coming back. His straight-up answer to my statement gave me peace. He explained to me that it never left so you can let go of the fear of it coming back because it is still there. It’s in remission which basically means that it is asleep and it is likely that it will eventually wake up.
When I got an infection this last time those white cells rushed to the site to clean it out. They did their job and I was feeling back to normal within 10 days. The lymph nodes are still swollen and may always be swollen because my white cells still have CLL and always will, they are just currently not multiplying. Because of the nature of the cell my body doesn’t recognize it and it takes a longer time to dissipate and actually may never even leave the site.
As long as I feel good and my labs are normal (and normal for CLL is different because labs are pretty much considered normal until I start having physical symptoms) we move on and live on. My labs currently are totally all within the actual normal ranges. If and when I do experience symptoms (fevers, infections that don’t go away, night sweats, decreased red blood cells) I will take a NON CHEMOTHERAPY pill that very recently passed through the FDA to knock me right back into remission. Easy- breezy- lemon- squeezy.
Not only has Dr. Flynn been pivotal in the remission of my cancer, he also has healed my spirit. Who woulda thunk ? I now know how to let go of the control and live with My Disease…and it really ain’t that bad J
Many of you who couldn't make it to the fundraiser have asked me what I said in my speech...Here it is
Thank you. All of you. I am overwhelmed by the response, love, and support received here this evening. There are no words to express my gratitude. Just know that I stand here today because of you.
This moment has been running through my mind for years now. I have always believed this moment would happen and as I stand here in the now, my life makes complete sense to me for the first time.
I can stand here and talk about my journey in terms of diagnosis, treatment, and survival; however I choose to tell you all a story about a little girl.
As many of you know my family was involved in a near fatal car accident when I was 7 years old, just about the age of my son. My earliest memories are not that of a playful, happy little girl. They begin with memories of fear, pain, and discomfort as this accident nearly took all of our lives. I spent many years battling dreams in search of comfort and peace and I have always associated it with this accident. The dreams were always in search of that thing, that thing that would make me feel safe. The dream is one of those re-occurring dreams and in the dream I am walking endlessly through unfamiliar streets looking and searching and wanting that thing. I know my husband has lived these night terrors with me. So many nights I am crying in my sleep and Rob is trying to wake me “Joanne, Joanne, it’s ok…it’s just a dream”….Just a dream. A dream that crippled me…what is this? What am I always looking for? Why can’t I be happy here? Well, maybe this degree will be the answer to my search, this is the job for me, maybe this city, yes, this it it…if we move, I will find it there in the new place… On and on and on for my entire life. What a torturous way to spend a lifetime.
On August 10th, 2010 (which happens to be My loving mother’s birthday) I was diagnosed with Lymphoma and life as I knew it ended. That moment is indescribable. A moment of fear, pain, and discomfort all over again, just like that little girl, but on a much larger level. You can read the story in detail on our website. The next couple weeks were weeks filled with hate and why me’s. So many things were running through my mind. How do I go on with these beautiful babies? What kind of mother can I be for them? Haven’t I suffered enough in my life? 18 months is not enough? Why would God do this to me?
I have come to realize that there are no mistakes in life as it all happens just the way it’s intended to. It is no mistake that our daughter’s name was chosen( by her daddy) to be Zoe which means life in Greek, my constant reminder of life and all that is good. The constant reminder I needed in order to survive those first few weeks. Ahhh Zoe! My baby who was only 11 months old at the time. Simply amazing.
It is no mistake that I met my dear friend Lori outside on the Witco patio at lunchtime some 15 years ago because she was able to provide me with my mantra throughout this entire process that meditated me to sleep every night and that runs through my mind constantly “My body is restoring itself to its original perfection” There is no disease my body can not heal”
Is is no mistake I decided to go back to school and befriend the quietest girl in my class back in 2008 because Julie was my calm voice in the storm. She was my unbiased shoulder to cry on, my sense in all the non-sense.
And the list goes on and on and on…Not one single mistake in life.
Each and every one of you who has supported me throughout this journey was placed into my life to provide me with the ability to survive : whether it was the beautiful cards letters received, the messages of support on facebook, the delicious foods brought to my house, the wonderful wives of Highland Square who made sure my children didn’t miss a single school event while we were away for treatments, or whether it was the glorious and very popular tool, provided to me by my friend Jim, of giving my bags of chemo love and prayer before having them injected into my body…no mistakes in having you all in my life. I can honestly find a connecting story like these with each and every one of you here tonight but I know you all probably want to get home at some point this evening J
I honestly believe God knew what he was doing when he led me into The James Cancer Center. Not only are they the best, but Dr. Flynn just gets me and has from day one! Dr. Flynn and his team gave me my life back and for that I am forever grateful. Finally there is some clarity on the course of action and I was reassured that things would be fine. Combined with the expertise, knowledge and naturopathy of Dr. Nick Parrason of Natural Wellness Center…we got this! I know you all feel much better about my care after hearing what these two fabulous Doctors are doing! Aren’t they awesome!!!! I am so lucky!
Wow, what a difference the right Dr. can make. So now my head is clear and I love deeper, I smile more, and life truly begins for me. I say that life begins for me because for the first time in my entire life the searching is over. That little girl I was telling you about in the beginning is a grown 39 year old woman who no longer feels the torture of wanting that thing because I found it. What is it? I know you are all so anxious to hear right? That thing is believing. I believe! I get it! Finally! God came to me and filled my heart and soul and I got this now. And for that I thank Colleen and Chris for bringing me here, to Church of Our Savior, one cold December morning J My healing truly began when I walked through these beautiful wooden doors.
I have learned so much and have woken up, and for this I thank you Cancer.
I must add this quick story here because I often think of it and feel so happy.
My wise son beyond his age Adam asked me at some point during chemo “Mommy, why would God give you cancer if he loves you?” What a mind that boy has. Geesh, how do you answer that one huh? Well, I made the decision early on in this process to be honest with him about my sickness so now I have to make some sense of it for him. “Adam, I say to him, God did not give me cancer however he did allow it into my life, you want to know why? Why Mommy? Adam, it is because He loves me so much He allowed this into my life in order to save me and make me a believer “… And of course…Adam totally got that.
I no longer search because I found it! No more night terrors, no more dreams of searching endless streets. I am so lucky to have a disease that hasn’t knocked me out and gosh darn it I am going to spread the word and do something about it! As long as you believe you will be cured. No matter what form your cure comes in, whether it’s leaving this physical earth in 6 months or achieving complete remission and starting a charity to spread the word, it will be your cure. Just believe in it. Believe that God has a plan and He knows what is best for you. All else will be cured.
I believe in research. I believe in education. I believe in cancer prevention. I believe in medical bill relief. I believe in God and I believe In The Cure.
Thank you all for joining me
I just checked out the progress of the new website design and let me tell you...IT LOOKS FABULOUS!
Thank you Carrianne Tuckley for all your efforts in making this website work. I can do a lot but web design is not my forte ;)
We have so much right ahead of us with Believe In The Cure. We will be launching our Give A Buck Campaign soon and we are very excited about it!
I met with OSU Medical Center last week and we are now a member of their Community Partners. Can you believe it???Partners with OSU Medical Center??? The sky is the limit and we are sure to reach it!
I am so blessed with health, happiness, and wonderful support. Thank you so so so so much Carrianne for taking on this task and donating your time to make this website work.
Last night was filled with love, hope, promise, and belief. I couldn't have made the night any more perfect. I want to thank you all for coming out and joining me in celebration of BELIEVE IN THE CURE!
My emotions were running so high and I honestly couldn't believe my life last night. It was so fantastic to see all the hard work unfold into the great evening we had last night.
The food was amazing, the speakers were educational and funny :) and the crowd was so loving.
The silent auction was a complete success as well..each and every item was bid on and sold!!! 72 items! Can you even believe that!! What great donations and support we received. Simply amazing.
My gratitude runs deep and my love for you all even deeper. Thank you.
And the planning for the next event began today!
Always Believe, Joanne
My thoughts in this blog post are inspired by the excessive commenting going on right now on Facebook. So many of us are commenting about the upcoming election and the changes that will happen depending on who is elected. I am not about to give my personal opinion on who I support but I do want everyone to think about what I am going to say.
Many of us don't realize how much of a change one person can make, and I am not talking about the President when I say "one person". I am talking bout YOU. Vote for whoever you believe holds your values, but remember that the change can come from you. Either way, the President can only do so much, really. I believe YOU can do more than the President.
So, what I ask of you all that read this is to 1.) share it :) 2.) make a difference.
Make a difference? Me? No way! I can't do that! How? When? I don't have time!
I know, I know...this is where I was 2 years ago. The answer is simple, it truly is.
Pick one family you want to help in your neighborhood because there is ALWAYS someone who has less than you no matter how little you believe you have. Choose one homeless person holding a cardboard sign and buy them a $10.00 bag of groceries. Whatever your good deed may be it really doesn't matter. The point is to spread the love. Whether it's to a family, a person, or to the environment by cleaning up a park...JUST DO IT.
This is how we become the change we want to see. Everyone can find a passion for something no matter how small or how big. Your personal passion can change one person's outlook which just snowballs into goodness. There is so much YOU can do. Go to the cancer unit or burn unit at a children's hospital and volunteer your time. The possibilities are endless.
The ultimate point to this post is to believe in what YOU can do and trust in YOURSELF to make changes. Leave the small stuff to the President and do something big.
It's so fantastic having a dream for so so long and watching it unfold and become a reality. I feel completely blessed and energized about the fundraiser. I almost can't even believe I am in the planning stages of it! It is really happening. Wow. Now I know why everything happened the way it did. I remember back when I was first diagnosed it was always "why me?" "why?"...now I know. This is why...Believe In The Cure is why.
It's because we can do something about our health now with the help of my charity. I would take that diagnosis over and over now knowing what it has done for me in a positive way. It really is so profound how it is all unfolding. I do believe in grass roots companies that literally start from nothing. These are the companies that can get things done because they come from a place of truth. Anyone who would invest all the time and money into starting an organization to educate people on things that all the government and medical agencies turn their nose down definitely should at least be listened to. Take it from me when I tell you that the hours and hours of my personal time that it has taken me to just get this far (and we have only just begun) are for purpose. It is coming from a place of much research and much personal experience and it is truth.
We must be educated on becoming toxic free and always questioning the labels provided to us on our products. Just because it has some stamp of approval by some big agency does NOT mean it is "good" for us.
We must be our own health advocates and take charge and I will personally be your guide!
I love you all for your continued support and please continue to share and spread the word.
We are so excited about the launching of our website!!! Feel free to look around and tell us what you think using the "contact us" form. Please pay close attention to the 'Home" page because it has all the information about our fundraiser on January 12th, 2013.
I am so happy that this charity has taken shape and I thank you all for following me and supporting me through my journey. Always Believe, Jo
My name is Joanne Filina and I was diagnosed with Chronic Lymphocytic Leukemia in August 2010. Since then I have made it my purpose to raise funding for research, education on cancer prevention, and medical bill relief. Believe In The Cure will do just that because if you believe it you can achieve it!!