Show me your Polka-dot's please!

I can't stop thinking of Polka-dot's this week. I have had my weekend of getting life ready for everyone else and crying my eyes out in a very freeing release. I am ready to punch these Polka-dot's out of my life for life. My brain is like a messed up ball of yarn, my stomach is in knots, it's hard to focus. However, laughter and music are my safety net. Friends checking on me and placing a smile randomly throughout my days, nights and waiting for me to wake up to. What a blessing. Benefit of friends all over the world lol. I can't even begin to express how much this means to me. I wake up too many times through out the night, but love the love waiting on my phone. (I keep my alerts off always, so that's not what wakes me up.) I love my village! Just another reminder of how important you all are in my life.

That being said.....on Monday, Feb 29th I declare it to be Polka-dot day....celebrate, smile and flood my fb, instagram, texts with you in your Polka-dot's....socks, shirts, dresses, ties....whatever works for you as it's officially Dawnelle kick polka-dot day!!! ♡ Those asking what they can do for me.....this is my request. It will bring many smiles to my face. :)

My Wishes

My wishes....if the day comes and there is time my wish is to have a living funeral.  I ran across an article about this while driving to my grandmother's memorial.  Time is so hard to plan in the unknown. And emotions are all over the board right after someone dies. So the planner in me, thinks a living funeral screams Dawnelle.  You see I have always said my funeral will be a party. To celebrate my life, not mourn my death. And after reading of a way to be apart of my own party....I want this for myself and for those I love that when my time comes nothing is left unsaid or unanswered. My daughter has always said she will have bubbles and balloons there for me. She definitely knows what makes her mom smile. I don't want any question to go unanswered of what my wishes are. So I figured my blog can't get lost as easy as a piece of paper. I want laughter. I want smiles. I want a big party with everyone I love. I want memories for my children, husband, family & friends to keep them going. I have already asked my cousin Ryan to perform my service, when the time comes. A question I know he never wanted to hear. I may be a dreamer,  but I am also realistic. I am not afraid to die, I am afraid of not fully living. Life is one big giant adventure meant to explore. It's not always rainbows and glitter. But learning not to let the crap get you down and keep you there, is a sweet tool to acquire. So if it's possible to be apart of my celebration of life, I chose this. I want the song: You're Gonna Miss Me When I am Gone", "There Will Be a Day of no more suffering,  no more pain". Then after I am gone my wish is to have my family take a trip of a lifetime and spread a handful of my ashes in all of our favorite places we have been; canyon beach, smokey mountains in Tennessee, Victoria, big crater on Hawaii, ebey's on Whidbey Island and then to take the rest of me to some where new of their choosing and let me go. I write this today not to be sad, but to let you have my words for when they are needed. I figure if I put it here, someone will remember. Do I think I am dying tomorrow?  Nope, but there's about 100% chance I will at some point. I leave this here for then. The other thing I have always said is Ken can totally remarry with my blessing as long as she is funny, has big boobs and invests in our children with love....he rolls his eyes at me for this...but my wish is that he keeps living with lots of laughter and love in his life. ♡ Love with my whole heart,
Dawnelle Claudette Bowen Pike Conlisk

Deflated

Feeling like a balloon that was filled up with excitement and then released to deflate and land in the unknown.

The never ending journey.....trying to find my smile.

Yesterday I went and saw a new Ear, Nose & Throat Doctor. Thinking I was going there to get a plan for the 5 masses that are in my neck. March 2015 they found 1 mass, biopsied and it was positive for papillary thyroid cancer. So we did the alcohol abliation to it. Which didn't shrink it, it has only shifted in it's size....like it was running away from the alcohol. October 2015 the 1 mass was now 5 masses. We had to make sure the masses in my lungs were stable, as this would dictate how we treated. Thankfully my lungs have remained stable. So now it's time to address my neck. But a detour came as they thought I had a blockage or cancer in my bile duct. Turns out I don't. I just have fat. Oh the laughter in release of holding my breath and fat jokes. But yesterday took my laughter away. I was told I should be thankful I have gotten almost 21 years now after diagnosed. Which in my head transferred to at least you have gotten 21 years.....what I am supposed to celebrate that at least I have 21 extra years and not to get greedy? I want more, I want to stop putting my family through this hell. I want to be normal, I don't want to wonder if I will have another 21 years of this up and down battle. I had a scope shoved down my nose on both sides and down into my throat. Good news no masses inside my throat. Bad news he doesn't know why I keep getting food and pills stuck in the bottom of my throat. Other then that's where one of the 5 masses are. But I am breathing ok. Next step is for my endocrinologist to do another biopsy either on just the one in my throat or all 4 new masses since October. 2 are along my throat and the other 2 are under my shoulder blade. If the one on my throat comes back positive with cancer, none of the treatments are good choices. Alcohol abliation, which that close to my vocal cord could paralyze my voice. But if we let the mass grow I could lose my voice anyways. Another surgery they are trying not to do, as the more I have the riskier they get. I-131 radiation treatment I have maxed out on. External beam radiation is a long daily treatment that would make another surgery really difficult due to the scar tissue it causes. I already knew all of this before I went yesterday. I actually believed I was going in to hear a plan. Instead I left with a confirmation that I am in the middle of a pickle. I left there mad, pissed and frustrated. We are going on 2.5 years now of this battle that has no quick fixes anymore. I want my life back. I want to wake up not worrying about when things hurt or every little bump I feel be something new that I need to worry about. I want to talk about fun stuff not how I am doing/feeling today. And yet I feel like this has gone on so long that I no longer know what kind of support I even need anymore. I feel hurt when I am not asked/supported by those I am the closest with. And yet I don't want them to even talk about it as I am doing my best to keep life "normal". There are days I cry by myself as I run and hide. Most days when on stage you will see me laughing and joking. For it is my mask. My emotions are all over the board. Today I saw a quote that said to dance in the storm and you'll be stronger on the other side. Is there another side of this storm.....starting to think not in my lifetime. If you read this to the end then I know you must really love me. Even the broken me. -feeling jumbled.

We have a choice

Thursday was unreal. I was on the bus going South on the island to fetch the ferry for my cancer check up. I gave myself extra time to enjoy the day and have lunch before my appointment time. We came up on the point of the island where it truly is the only road. Right in front of us is a head on collision and the cars are bouncing back apart. A 20 year old female hits a 72 and 90 year old couple and their dog. The 20 year old didn't make it. It was horrible watching this play out. I end up asking a stranger for a ride back to my work where I had left my car, after knowing it was gonna be another 3 hours before the road opened. I get to my car and head north off the island to head south on I-5 to get to my appointment. My GPS says I will be there 15 min early. Then I-5 comes to a stand still. I look up and see 2 helicopters, then I look at the empty north bound lanes and a fire truck goes flying by going south on the north side. I wonder if we have another fire. Come up on another horrible accident. Counted 7 cars....turns out a 19 year got distracted by her dog in the car, was going south but crossed the medium into north bound traffic head on. She survived but killed a man. 

I ended up arriving at my appointment with only 1 minute to spare, at this point I had only had a coffee and a pop tart to eat all day. But I survived the drive. My appointment turned out like I had already figured out from my lab work. My tumor markers are elevated....so once again I jump on the crazy ride....this is getting worse then my first ride on the colloses at magic mountain that I was dragged on to. But in this instance I have a choice of getting on the ride or just watching from the sidelines. After my adventure just to get to the appointment my view has changed. I am still breathing, and I choose to just keep living happy. I keep getting my pills and food stuck at the bottom of my throat. We know there's a new mass there....and we know I have a confirmed cancer mass on the right side of my neck, that failed treatment.  So the next step is an ultrasound to check these two and see if there's any more. I am at the point where another surgery is so dangerous. Even though my surgeon has been called a cow boy. External beam radiation would make another surgery almost impossible if needed, and I-131 radiation would put me at serious risk for lymphoma and leukemia. So all these options are in my back pocket for emergency use only. So basically I am in a pickle. I am starting up on more meds to see if the blockage is from a silent acid reflux before having another tube shoved down my throat. And yet the doc is still concerned about the lung spots too. So this month once insurance approves I will have an ultrasound. In December in will have another CT of my lungs. But we can't do anything until the masses grow bigger then 10 mm. So basically at the end of the day I am choosing to just be living with cancer and ignore it to the best of my ability. Because clearly at this 2 year point since my last surgery I am still in the same place of the unknown. But isn't everyone's life unknown? Makes me really no different. I ended my day with a little retail therapy, time to myself and arrived home at 9 pm. Just really thankful and grateful for what life has brought me. Now to have another motorcycle adventure and some fun today. 

Sent from my Verizon Wireless 4G LTE smartphone

Finally after 3 weeks of battle

It has been an insurance battle I have never seen....and I have fought with insurance for over 16 years now for work. Just got the call.....my sleep study is finally scheduled for September 20th. Could be earlier if someone cancels. But just the simple act of having it scheduled, makes a difference in my head. We're going down the list of trying to figure out what is wrong with me. Sleep Apnea would be a welcome blessing vs. anything else. But like everything in my crazy medical journey.....I can't seem to fit into the "normal box". I am getting so tired of this constant fight. There are no plans at this time for what we are going to do about the cancer mass in my neck. That really leaves so many questions that I have no answers for. This week while being off of work I am trying my best to reroute my thinking.....for some reason God has not given me the miracle of clean health. I know there's still so much more I need to learn. I have prayed my whole journey for His will, not mine. Not once have I actually asked Him to cure me. At times I don't feel like I deserve His touch. Why do I doubt His gift is for all of us? I am human, full of doubt of myself, like I have to earn His healing touch. How has society taught us we're never good enough? All those Bible stories growing up play in my head. God is Love. I have prayed for God to use my journey to help others. So does that mean that God has answered my prayers? Working on the depths of my soul and finding peace, joy & love along the way. ♡

Answers......my plan not His...not exactly....His plan, not mine.

What a week! I am so impressed with my son's track season. He needed that in his life! Great coaches, great teammates & great competition. Was so wonderful to have 8 weeks of positive flood our lives.

I am currently on my way down the island on the bus, catching the ferry and then getting picked up on the motorcycle from Ken. I am not the best of company right now, as tears keep escaping down my cheeks. I don't like others seeing that side. So I am actually thankful for this time to process alone. Head phones on and letting music flood my heart.

On Monday my let's check and see if this treatment worked ultrasound happened, as well as the let's peekaboo at those lung spots, and the let's check your blood and read your life test. So on Tuesday, I gathered all of the results to take them today to my follow up. So you know I read them....how could I not? Definitely deserve some kind of life degree....lol I am blessed to share my office with some amazing oncologist, whom are not officially my doctors, but have helped me process this time for sure. On Tuesday, our doc made me laugh and said I should go back to school and become a doctor because my understanding is there. I hope I understand some of this after a 20 year battle. What I read is my tumor where the abliation was done didn't shrink, it shifted in size. Guess it tried to run but was blocked. I also have a new mass on near my vocal cord. My Lung spot has grown. As well as my labs are elevated.
Yesterday I received a copy of the letter my doctor wrote on my behalf for my appeal. Right now they have made $277 my responsibility. But I did an appeal on my own behalf. Praying it worked. However, in the letter my diagnose has changed. But seeing it in print from my doctor hit hard. I am no longer categorized as papillary thyroid cancer. Which deep down I knew but seeing it from him, hit me hard. I am now metastatic papillary thyroid cancer. That M word hurts more then the C word. I can't really put it into words. Other then it SUCKS! When ever cancer leaves its primary it becomes metastatic.  However all this time I had my brain convinced that I just had leftover thyroid tissue in there. Brain games at its finest.

If I had to guess what today's appointment will hold. I would say maybe another biopsy on the new mass. But the new treatment failed....maybe the oral chemo pill.....we're about to find out if I am right. What I do know is I am certain I will refuse radiation or even external beam radiation. Not worth the doors both of those would totally close for me.

But first a motorcycle ride and a lunch picnic with my honey.

Doctor appointment done....

So here's what the plan is....referral to a pulmonary specialist. Pulmonary function testing ahead. And having a lung doc add his input on these lung spots. Pending those results.....we will meet again and discuss oral chemo pills. As far as my neck tumor, we will not be doing any more abliation treatments. The outcome wasn't what we had hoped for. We will keep the neck mass in a hold pattern until the lungs are figured out. Praying the neck injection scarred it just enough to help it from growing.

It was mighty hard to admit symptoms I have been trying to ignore. And listening to my husband rat me out to the doc. Ken's words "She's not functioning on all cylinders. When she doesn't seem right I take over driving. She's not sleeping good, like she used to."

I thought I was superwoman and could just do it all. Reality is I can't. So now we start the referral process and insurance authorization. I am going to do my very best to just live in the moment. But I will be honest and say this is not an easy one.

So we end the day with no new answers, but the start of a plan.

It's almost time

It's finally time to find out if my treatment worked or not. On Monday I will be having an ultrasound on my neck, blood work, as well as a CT of my lungs and their polkadots. The neck ultrasound will be measuring my known cancer mass. The goal was that the alcohol shrunk it's size. While it doesn't make it fully go away, if we shrunk the slow growing cancer we will repeat ablation in 2 years. If it shrunk only a little then we inject again soon. If it didn't shrink at all, then we talk surgery again. As far as my lungs, if the masses have grown in the last 2 years...well honestly I don't know what the plan is with them anymore. 2 years ago they talked about external beam radiation. I would assume that if they have only grown a little that we would just keep watching them. The rate of growth vs the exposure to treatment... So yeah let's not go there until we have to. How am I really doing? I try and put on a mask every day. I don't really know how well I have successfully pulled off my disguise. My body is screaming with exhaustion. But I have mentally made the choice to just keep swimming. One step at a time. I have really enjoyed working less and sitting in the stands cheering on my son....what perfect timing and excitement. So my plan is to piggyback on to his winnings this Monday...his goal is to win the mile again, and mine is to win my scans. My selfish prayer is that my energy comes back soon...but my heart prayer is still that God's will be done and that I keep my brain from the yucky train all weekend long. Something shifts once you actual have your tests scheduled. Which just happened yesterday. Tonight is Relay for Life and this year will be extra special as my Mom, Ken, Mary and Danny will all be there with me. Such an amazing celebration that I am looking forward to. There's something pretty amazing being a fighter, survivor and embracing patients of present and past, and extra special hugs when you come around the corner and embrace a family member of patients we lost too soon. Oh my heart is so warm and fuzzy. ♡