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. ♡

Heading to get my ruby slippers...

Saying someone can't be sad because someone else may have it worse is just like saying someone can't be happy because someone else might have it better.

This past month I have let cancer win. It felt at times that I wasn't allowed to embrace my own journey. I have watched others fighting, dying and getting diagnosed these past 2 months with worse cancers then my "good cancer". Is there really such a thing as a "good cancer"?  Those words have taken a giant toll on me.  For 20 years now I have fought to push thru thyroid fog brain, staying positive and full of life, fighting being exhausted and wanting to always take a nap, and just being cold. That is my norm. But we all have issues and I choose to not let it keep me captive. I have been really short fused and grouchy. I apologize for being snappy. But the quote above really hit me. It's ok that I am sad....and it's ok that I embrace my fears. Because I have to process my journey too. Having a scheduled plan has always been my turning point. I can best describe it as that moment after a storm when the clouds open and the sun starts shinning. I am nervous as there's so little documentation on my procedure ahead. But I am willing to try it because this could be a giant change if it's successful in the world of treating thyroid cancer. Only one day off of work. And if for any reason it doesn't work, there's always surgery. Really looking forward and praying I can watch the screen as the nasty beast melts away just like the wicked witch. Gonna get some ruby slippers! Sparkle time!  #strengthhopelove

Numb & Sorry to take you on this ugly adventure again.

I am numb and frankly mad! As I watch my family around me breaking worse then I have seen yet. We were just getting to the point of starting to actually put our dreams on paper for the future. How do you act like everything is normal and ok? While I knew the doctor thought my cancer was back, hearing it actually confirmed had to be one of the worst moments yet. It doesn't get easier time after time.....it gets worse and you wonder if this will ever go away. It feels like a monster is smashing my parade. I have learned a few things in the past few days....the new chemo pill won't ever cure me. It only slows the cancer down with all the nasty chemo side affects. So they lied when they said thyroid cancer is the good cancer to get. Yes it's slow growing, but that slow growing is what makes the chemo not kill it. Right now I am in the waiting pattern for a referral & insurance approval to find out if I am a candidate for alcohol ablation therapy. The ground has swirled up into dust around me and I am having a hard time processing. I am exhausted, my stomach is nauseous, after a few bites I am done eating....trying to push thru. Getting lost in work to try and keep my mind busy. Holding tight onto all of you right now. Every sweet word, hug & laughter really makes a difference. Thank you! ♡

My mother n law will be in the hospital for a bit....today she said she felt like she was on a vacation. Pampered and a beautiful view to boot and a whole ton of attention from multiple phone calls from her family. She is still going thru more testing. Ken stopped on his way home from work tonight to see her. She was weak but smiling.

It's odd to look backwards over these last 4 years since moving to Whidbey....life after the military has definitely not been boring. Is it wrong to pray for some boring times ahead?

Putting my battle gear back on.

Wow in the last two weeks I first heard no surgery,  no cancer. Then yesterday, I hear "Oh no, let's talk about treatment.  Dawnelle, you know this is your new normal and we'll fight it for the rest of your life spot by spot." What the heck just happened???? Yesterday I went in to my endocrinologist and with me I took all my images, reports & labs. And I told my doctor I was confused and that it didn't all add up. He did another ultrasound then and there on the large mass that I had already been told was an infection or clogged saliva gland. He agreed, he went to put the wand away and I spoke up and said what about the smaller one on the other side that had the blood flow to it (those rainbows I saw last month that made me more nervous). (Side note: infections don't have blood flow like tumors do. Blood flow is what feeds the beast.) So he scanned the other side. He was training a student yesterday as well so he was talking thru the whole procedure as a teacher too. Next thing I hear as I could no longer see the screen from my position was, "oh no, let's go talk about treatment." He sat me down (yes, I was alone again.  Ken and I made that choice because we thought it was just a normal follow up. We had just been told I was clear 2 weeks prior.). He then talked about the fact I had already had 4 neck surgeries and we needed to try something less evasive. Dawnelle you know deep down this is how the rest of your life will be. We will fight it one spot at a time. First step is a biopsy to confirm his thoughts based on shape he believes the cancer beast is present. A neck biopsy to me is worse then surgery.  It hurts so bad. They put a needle into the mass and basically go up and down multiple times to get some out to test. Usually in 4 different spots of the mass. YUCK! My doctor will be performing this procedure on my son's birthday,  February 12th. It was his first opening and Danny will be in school anyways.  :) Ken will be going with me. Pending results & insurance approval he wants to do ablation therapy. Which is where they go in with imaging and place a needle directly into the mass, inject some kind of alcohol liquid that will burn it. Go back a few days/weeks later image again, inject again until it's gone. Side effect: if the liquid leaks out of the mass I will have a horrible burn on the inside of my body. Thankful how far studies have come and for options. Another option is a chemo pill, but because of side effects he doesn't want to go there yet. And we all know radiation is out of the question. How did I get 2 different answers?  Well a CT doesn't show the same as an ultrasound.  But I also never asked the surgeon about the other spot. Down side of multiple facilities doing testing.  We were focused on the big mass we could all see from the outside.  Hopefully this answers all the questions.  Now how is my head & heart? I am holding on tight to the doctors words of him saying it's not an aggressive cancer. I am lacing my boxing gloves up again and tattooing a smile back on my face. Yes it sucks but my attitude is the only thing in my control, clearly.  Thank you for loving me and riding this roller-coaster nuttiness with me. Good grief Charlie Brown!!! 

Living with Cancer, not dying from Cancer

I have been quiet for a while as I was going thru a battle getting my old scan images from Virginia Beach. Now they sent them 4 times, some how never getting to the right place.  The 4th time I had them mailed directly to me. Like a dummy I handed the CD'S over to my doctors office with a promise they'd be mailed back to me. A month goes by and I wake up in the middle of the night thinking about those CD'S I never got back. Contacted my docs office and no one knows what happened to them and they were never down loaded or reviewed with the new scans. Needless to say I wasn't exactly thrilled at this. So with my tail between my legs I contacted Virginia Beach AGAIN.....this time I received my CD'S AND the print outs of the report's.  Which all became a blessing as now we have measurements.  Because my scans from 2005 & 2006 were not normal,  as we were told back then. Who knows why! Thank God my cancer is super slow growing.  It was interesting to say the least to read about the mass that almost caused me to lose my voice. Because in 2005 it was noticed. The spots in my lungs were also noticed,  but were smaller. So with all this old but new information we are able to see that in 9 years my Lung masses have only grown 3 mm. What does this mean? It means I am living with cancer, and will for the rest of my life. The location's of my "poka dots" are smack in the middle of my lungs, which means no biopsy or surgery can be done. My radiation days are in my past, I can't have any more without giant risks. Just not worth it! My thyroid medication is double of what I used to take, and my body has accepted it without heart palpitations. Which is fantastic because the medication should keep the cancer from growing too much. 3 mm in 9 years isn't too bad. My doctor believes the poka dots in my lungs are the thyroid cancer, which we know by blood tests that it's still alive in me. It's taken me a bit of time to process and wrap my head around this information. I look at it as I have two choices: 1. I can be living, not stress over what I can't control.  Or 2. I can be dying (which we all are, if you think about it). And get lost in a land of depression.  We all have these 2 choices in life. I don't write this for pity or sympathy,  but for those who want to know where this cancer road has taken me. My next blood work is December 2014 and another scan in July 2015. I just passed my 1st cancer birthday yesterday 19 years. Something to celebrate for sure!! My second cancer birthday is in 2 months.....something mighty special about that! Hugs and thankfulness for all the love and support you all have shown. ♡

Different makes a difference!

For 10 days now I have been on "vacation". What is the purpose of a vacation? I would guess the whole point is to unwind and relax so that you can get right back at life and function. We have lived all over the country and because of that we have vacationed in many different amazing places. This week I have learned it's not so much the destination or the amount of money you spend (which sometimes turns vacation into stress). We were supposed to go to Vegas for a week. However after talking it thru with the kids and Ken, no one was excited to go. So we changed all of our plans. Ken only took 3 days off, however I kept my 11 day stretch off. It's been 2.5 years since my back surgery and time to me to get thru my craft crap. I am surprised Ken hasn't thrown it all out by now. Now you may say that's not a vacation,  however let's go back to the definition.....by getting threw this mess I am releasing ongoing stress and arguments in my future. Besides it's kinda like Christmas and unwrapping gifts. Oh the things I forgot I had. Finding purpose or getting rid of "stuff" is more freeing then laying on the beach. I would have never said that ten years ago. On Wednesday we left for 3 days to stay at a house on the beach on the Washington coast.....the kids ignored their electronic's and we played board games, walked the beach, found a kite and flew it with a broomstick handle, laughed, watched some movies and laughed together. What a fabulous bonding time. Last night as we waited for the ferry we started watching Fireproof, that giant phone of mine came in handy. This morning we finished the movie. What a great reminder of why one should always date their spouse and constantly study them as well. It really summarized why I am doing so much around the house on vacation.  Not because boxes bug me, but because it's important to Ken.  Love that we did vacation different and boy am I actually very relaxed at the end of this "vacation". Guess all those times of saying "it's the little things" really does matter.  So here's to today and tomorrow to finish this giant project. Live, Laugh & Love thru even the boxes. Release the baggage!  ♥