Lightning Strikes Again

Would you imagine for a minute if lightning were to hit you, what that jolt would do to you. Then imagine if it happened twice! I’m not talking about lightning striking in the literal sense, but we often have events that happen in our life that really feels like such an immense jolt. It makes us scratch our head and think what in the world just happened to me and why? The events that have happened in my own life are related to having that evil enemy we call cancer strike me not just once, but twice. It was bad enough when I learned that I had Stage IV thyroid cancer and the complicating journey I’ve had with that, but then was I was told that I had another possible cancer, that pill was a bit hard to swallow.

Here we go with events that led up to learning about my second cancer journey. Going back to January of this year, is where it all started. I work with an awesome group of special needs students and as you can imagine in any school environment when one kid gets sick, they all do. It spread like wildfire this year and of course I succumbed to it as well. For me, the minute I get the slightest cough it turns ugly into a full-blown asthma exacerbation.  This went on for the next three months. My immunology doctor and I both could not understand why it was so bad this year. So, she recommended that I have a chest CT to investigate further whether there was some other underlying cause. One never wants to hear those words…. I have good news and bad news, but that was the phone call I received from her the following day after that scan. The good news was that the scan didn’t show any underlying reason why my asthma was so bad this year. Unfortunately, my doctor said that it was just a bad season for my asthma to flare up. Incidentally, the scan showed a large tumor on my left kidney. She suggested further testing. So, one ultrasound and another CT scan later, it was still highly suspicious of renal cell carcinoma (kidney cancer), but they could not differentiate if it could also be a benign tumor. This all seemed so surreal, I thought I must be dreaming or something….is this really happening to me? It was a bit hard to digest.

Like always, my doctors at the university took swift action getting me in quickly to quite an awesome urology surgeon, Dr. Nicholas Cost. He explained to me that because the tumor is so large he highly recommends that we remove the kidney. He said the other option would be to just watch and wait to see if it grows further. I’m thinking to myself oh hell no! I’ve already been through the watch and wait with the thyroid cancer. I want this thing out before it has the chance to grow and cause even more problems!  I scheduled the surgery about a month later so that I could complete the school year out. In addition, we had already made plans for my husband to be home from overseas at about the same time.

The surgery went as my surgeon and his team thought it would and my left kidney was removed successfully. I was in the hospital for two days and I could have been discharged the next day, but my oxygen levels kept dropping. Thankfully, it resolved itself quickly. I was glad to get discharged as it seems that you can never get any real rest when you are in the hospital as they are always checking your vitals so often. I understand the importance of that, but sometimes you just want to say enough already! It was kind of a rough ride home from the hospital as we live ninety minutes away. I felt every tiny little bump, but utilizing some pillows helped to alleviate the jerks I felt from each little bump. At least I was riding home in style with my husbands new ride, he had just bought a new 2017 Ford Mustang convertible. At first he had the top down, but that lasted about a minute. It was easier having the top down to get me in the car, but I didn’t feel like getting wind whipped; nevertheless, I was able to endure that ride and grateful to get back home and to be with my family.

Testing after removal of the kidney did in fact show that it was kidney cancer, but the good news is that it was caught early and so the only treatment needed is the removal of the kidney. No radiation or chemo is required!! I am truly full of so much gratitude for the amazing team of doctors I have at the University of Colorado Hospital. I have been blessed beyond measure to have such a stellar team of elite professionals, who truly care about their patients. If my doctors had not been so proactive we would have never known about the kidney cancer. I’m truly lucky and grateful it was caught early. Expressing thanks just doesn’t ever seem to be enough, but I hope that each and every one of those doctors know just how much they are appreciated!

I never imagined that lightning would strike me twice! However, I have witnessed and experienced many tender mercies over the course of my cancer journey. Although, the road has not been an easy one for me, I’ve learned so many valuable life lessons along the way. As my friend Rob, who unfortunately lost his cancer battle said to me many times “we need to embrace our sufferings and adversities if we can, as we will learn the most about ourselves during that time…… we are walking through the refiner’s fire to make us into something better.” His words have always stuck by me and there is such truth to them. I miss that man so much! What I wouldn’t give to have just five more minutes to talk with him.

I was recently reminded of how many of us throughout our lives will be asked to climb mountains and some days it may feel as though we may never reach that top of the mountain. We may ask ourselves how is it possible that I can do this? Nevertheless, it is something which is attainable if we exercise a little bit of faith, patience and belief in ourselves that we can do hard things. I know that this is just one of the many mountains that I have been asked to climb and I am sure it is not the last. Although, life may sometimes knock you down, what matters most is that we keep getting back up. We must make that choice to never give up, to keep going even though it is hard. What can define us is how well we rise when we are knocked down.

A very good friend of mine, who also happens to be the surgeon that took out my thyroid has always given me those reminders frequently that every day is a gift. It is something that took me getting cancer to truly understand just how precious life really is and that tomorrow is never promised. How we choose to live out the remainder of our days is up to us. How do we want to be remembered? What is our legacy going to be? I want to be known as that person that didn’t let bad circumstances such as cancer effect my outlook on life. Also, it is to educate others on the importance to pay attention to your body and health. Learn as much as you can about your disease and pay it forward by passing the knowledge you have on to others. Most important of all, tell the people in your life just what they mean to you, life is just too short not to. Don’t let cancer or anything else that comes in your life drag you down. Grab life by the horns and don’t let anything hold you back. Be your best self. A great and simple truth I have learned is to appreciate every precious moment and live as though today is your last!

I will close this post with the following song which has such a great message that we can rise above anything that comes our way it just takes a little bit of faith!

Never Quit!

Those fellow thyca warriors can relate to that familiar feeling of scanxiety. That feeling of fear and anxiety that sets in as one simple test can determine your fate. Are you are going to be sweating bullets, or can you actually be breathing a sigh of relief? Is your cancer going to be stable, or does it go to the next level of sheer panic as the cancer is spreading? It doesn’t matter how long you’ve been at this, whether you are newly diagnosed or even an old pro at this, these feelings just never go away and it surely hit me hard at my most recent ultrasound. You know something is suspicious when you have three separate ultrasound techs that come into the room to scan your neck over and over. I don’t know, maybe they could have been training someone; I always have two techs, but never three! I guess I am fortunate to be at a facility that is very thorough. Sure enough, test results revealed yet another questionable nodule that has appeared that was not seen previously. They can’t be one hundred percent certain that there are calcifications in there, which can be a good indication that there are cancer cells present. The size of this nodule is too small to even biopsy and so now here we are once more, playing this continuous waiting game! My Tg, which is the tumor marker is slightly up and TSH levels are above levels that both my doctors and I are comfortable with. It puts me at greater risk of not being suppressed as I should be and maybe that is why this new node has appeared.

Before these tests I thought to myself that I wasn’t going to worry about what the results were going to show. However, this enemy we call cancer can strike at any given time and for people like me who have persistent disease, we simply cannot afford the luxury of not being on guard. Although they can’t prove there are cancer cells in there right now, my gut instincts tell me otherwise and it’s only going to be a matter of time before it will be proven. I have always been able to rely on my gut instincts and very rarely has it ever been wrong.

Naturally, this finding was upsetting to me. Why does this seem to keep happening to me? It’s like they appear out of nowhere. I’ve come to the conclusion that this is something which is going to continue to hang over my head. I am not going to lie, always being told “no we can’t do anything with this,” has certainly taken its toll on me. Nevertheless, I know how I choose to react to the situation can definitely make a difference in its outcome and where I go from here. I was going through some old messages and emails and just happen to come across a message from my friend, Rob who went through his own cancer battle that he unfortunately lost. I have mentioned Rob before in my blog. That message was one in which Rob told me that “when you start to lose your mental battle, your body will not be far behind.” Why did I happen to come across that message at this particular time? That message was something I really needed to hear; even from the grave Rob is continuing to support and give me encouragement. Thank you Rob, message received!!

I love this quote and it rings so true…….

We dont meet people by accident

People come and go throughout our lives and they are put in our path for a reason. There are many angels among us and are all around us; sometimes we don’t even recognize it. Nevertheless, I believe it is God’s way of taking care of us. I have much gratitude for those angels who have been put in my path on this journey. Rob has been one of my many angels in disguise and still continues to inspire me even though he is no longer with us. I never had an opportunity to meet Rob in person, only through online communication; however, I do look forward to the day I can see him on the other side and thank him for his part in helping to guide me through my own cancer journey. Other guardian angels include all my other fellow thyca warriors and most especially my doctors and I thank God every day for them. They are the real heroes and without them I wouldn’t even be here!

One thing is for certain, I know I have to be vigilant and keep a positive attitude throughout this whole experience. It is the one weapon I do have control over against this enemy, because if I don’t the cancer wins! If you are going through your own struggles and trials in your life, whether it be going through cancer, loss of loved ones or other difficult challenges, please know that there is always a light at the end of the tunnel. It might not seem like it right away, but it will happen, it just takes a little patience and leap of faith! The message I want to get across is simply this…. that no matter what challenges you face in this life you must never, never give up! I want to close with the following poem which I came across that says it all!

Dont-Quit-poem (1)

 

Looking Forward

Every year we are given the opportunity to have the chance to start over fresh at the beginning of the year. To learn from the past year, things we should have done and what we can do better. This past year has certainly been one that has been filled with some challenges. I’ve lost a few people in my life……..mostly to thyroid cancer and to other circumstances; also, I’ve had some challenges with the cancer, but I won’t go into that as you can read about that on my previous blog-posts. In addition, having my husband deployed has been something that has weighed a lot on my mind as I am concerned for his safety, but very grateful and proud of him for his willingness to serve alongside those who are protecting our freedoms. Nevertheless, I am looking forward to good things happening. However, as I have faced the many challenges in my life one thing that comes to my mind is that I have seen how the grace of God and his tender mercies are working in my life. We are all going to have rough patches at one point or another in our life when we think to ourselves “how can I handle one more bad thing happening in my life?” Nevertheless, something that I have realized is that when we experience these times of sadness that we are actually alive and there is a song that I want to share that describes that. The song is called, “This is What It Means,” by Danny Gokey. Music has been another avenue for me in dealing with life’s challenges. It has also been a great tool I’ve been able to utilize that has provided me encouragement as I have experienced the challenge of facing cancer and other difficult times in my life. I am grateful for the wonderful friends in my life who have helped me to learn and appreciate the power of music.

We are going to experience joy, pain, fear, faith and loss in our lives and I believe that this song depicts it perfectly. It is through experiencing these various emotions that we know we are alive. When we can no longer feel these kinds of emotions that is the point when life stops. The grace of God is what gets us through those difficult times; he makes up the difference when we think we cannot do no more. We can see the hand he plays in pulling us through those tough times, but we have to take that leap of faith and trust in his almighty hand. He works in very mysterious ways by placing circumstances and people in our path to help us in our journey. I have seen it firsthand in my own cancer journey the many people which have been placed in my path to help me and guiding me through, to which I am truly grateful. Nevertheless, we will not be free of sadness and sorrow as that is a part of life, but it is how we react to those situations in our lives can that can determine where we are going. Something that I heard a long time ago and not sure where it exactly came from, but it is something which has often popped into my head is that “our decisions can determine our destiny.” We don’t always know how we are going to react to a situation, but this is a bit of wisdom that we can always remember. Sometimes you have to sit and ponder a situation before you do react.

As I ponder and reflect on this past year, it makes me understand that maybe perhaps I didn’t react the way I should have to some situations. Life is surely a big learning curve and the important thing is to learn from our mistakes. The beginning of each year is a fresh start that allows us to reflect and hopefully make changes if necessary. I hope that we can each look forward to the coming year and for me personally I see this as an opportunity for growth and development, to improve and make myself better. It is important that as we do face challenges in our lives that we embrace them fully. It is through those challenges where we can be strengthened and it can also help us on our path to become the person we were meant to be.  I will close this post with the following quote which I really like and believe it to be very true:

 

Challenge quote1

Impacts

I was recently asked “what is an unexpected way that a cancer diagnosis has had an impact on your life?” As I have pondered and contemplated over that question here is what comes to my mind:

I never expected that losing many people to thyroid cancer would hit me so hard. I guess the main reason for that is because I’ve had that opportunity to get to know them and some very closely. Although, the majority of them I’ve never met in person as we have only communicated in online forums or on the phone, but yet I feel like I’ve known them my whole life. You get to know them and their families. That is the hard part, knowing the resulting effect of the loved ones that they leave behind. I am feeling this more and more as it seems we have lost so many in the last year and the numbers just keep on climbing. You always have that fear in the back of your mind, am I going to be the that next statistic?

The other reason is because I get to thinking well now who is going to be there and uplift me when I am facing more challenges that happen with this beastly enemy? I guess it makes me feel a little bit lost in a way and then thoughts start rolling in my head and then I start to question everything. Why do things happen the way they do? Why do people have to die from this disease and other tragic events? Sometimes in this life we will never know that answer and have to just go on faith and trust in the almighty, no matter how hard that is sometimes. This is a constant wrestle that I have with God and one day I will have that extended conversation with him face to face and get those answers, as will all of us.

Nevertheless, I am realizing now that it is up to those of us survivors who are left to keep the driving force going and to be the ones who are there to uplift and encourage everyone else and even more importantly to those newbies – those who are just now facing cancer and need that direction in understanding about this disease. Those that I have lost were my guiding light, because when I started this journey four and a half years ago it was as though I was flying blind, not knowing anything or where to turn. I have to say how truly grateful I am for those that were there for me and so now it is my turn to pay it forward and be someone else’s guiding light. Each and every person I have met along this journey has helped me in one way or another, whether it be the many doctors, nurses and other survivors; each of them have played such a crucial role in where I am today. I want to encourage my fellow survivors to do the same and to be the difference as you never know the impact you can make on someone else’s journey! I will continue to make it my life’s mission to be that difference! If I can make someone’s journey a little easier, I want to do that because someone did it for me!

In addition, as I have been facing losing people in my life over the last few years, I have been reminded that life can and will go on. If anyone has faced loss or heartbreak in their life perhaps the lyrics from this song can provide you some comfort. It is a song entitled “Tell you Heart to Beat Again” by Danny Gokey and it has a powerful message that I want to share; I hope it helps you as it has helped me to have a better understanding about loss and that we can move beyond the bad things that happen in our life. I’ve also come to that realization that I’ve had to mourn that loss of a life that I once knew, the life before the cancer happened. Nevertheless, we can all come to an understanding that there is purpose even in our darkest moments as we face the many challenges in our lives.

 

Having cancer has helped me to truly understand what is important in life and that each moment is precious and something I’ve learned not to take for granted! Another great principle I’ve learned is to be sure to tell the people in your life how much they mean to you and that you love them, because you never know when that opportunity will come knocking again. No one wants to have regrets, so seize those opportunities when they come. We have to live life to the fullest extent possible, because tomorrow is never promised! I really like this quote and it speaks for itself:

tomorrow never promised 2

When those opportunities arise to be the difference to someone else we need to grab it and run with it! You never know the impact and imprint you can have on someone else and something which I will always strive to accomplish, as I said before someone did it for me and I want to return the favor!! I want to end with this important quote on how one can make an impact. It doesn’t have to be something big and it’s those small little things that have the greatest impact. You can make a difference in the life of someone else, so be the one!!

be the difference

 

 

Vicious Cycle

Have you ever been on a ride at an amusement park that just seems like it will never end? That is what I am feeling like right now with this cancer journey. We seem to go round and round over and over and it never seems to end. So here we are again with testing time and I wasn’t even going to worry about what was to come; however, it was as though I was hit with a brick straight in my face again. The latest ultrasound shows yet another pesky suspicious nodule on the same side as the existing nodule that they can’t get to. It appears to be too small at this point so now we wait until it grows big enough that my surgeon feels he can make an attempt to remove it. Even when Dr. Song was explaining this all to me, I didn’t quite absorb it until after I was halfway home from Denver. I just wasn’t myself as I have been battling this nasty bronchitis the last two months and was feeling just downright crappy. This has also caused my asthma to kick into overdrive and so I’ve been having a difficult time with wheezing which they’ve had to put me on more than one inhaler. Now it seems that I also have another sinus infection on top of it as well. I am hoping that this next round of antibiotics kicks this crap to the curb once and for all. My immune system is seriously messed up big time and it’s seems to be harder for my body to fight of these infections!

With the amount of coughing I’ve been doing and how long it’s been going on the thoughts always keep racing in my mind – has the cancer spread to my lungs as well? That has always been one of my biggest fears that I am going to get mets to other areas of my body. Luckily, my tumor markers are stable and not showing signs of an increase which is a good sign. I guess I will take that as a positive step forward. I was really hoping to get on a yearly follow-up schedule, but it’s not in the cards for me and so I guess I need to be watched a little more closely. I know that many of my thyca friends are facing similar situations and it’s always great to know that you don’t have to go through this alone. To know that there are others out there who truly understand what you are going through with the anxiety, the fears, the ups and downs of trying to get your levels right and feeling good. They understand because they are walking those same pathways as you are.

Although us thyca survivors have to experience this vicious, seemingly never ending cycle as you never know when the cancer is going to strike back which is why continuous lifetime monitoring is so necessary. Even with these never-ending challenges I am greatly reminded to stay strong and be courageous and the following scripture quote reminds me of that. I know that I am never alone and although at times I wonder whether God is with me during these dark moments, but deep down I know he’s there. Even though it is difficult to feel his presence at certain times in our life, we have to take that leap of faith and trust in His infinite wisdom – there is a reason for all of this.

Strong and of Good Courage

 

I just have to remember that what doesn’t kill me makes me a stronger person because of it. This cancer has nothing on me; the minute I give the enemy the upper hand and make it believe it will beat me that’s when it wins this war and that simply CANNOT happen! Nevertheless, I would love to get off this cancer ride, but I guess I would rather take this ride with all its twists and turns, than to have the ride of life stop altogether. So I just have to keep pushing forward and do the best with the circumstances I’ve been given – to keep calm and just keep swimming!

 

What doesn't kill you

 

 

Tribute to a Warrior

Rob1

 

Rob3

 

 

 

Rob5

 

 

 

 

People may come and go throughout our lives, but there are those few people that touch our lives in such a way like no other; those extra special stars that put a stamp on our heart so deeply and we are never the same. One such unique individual that I have met through the online cancer support group forums is a wonderful man named Rob Bohning.  As many can attest, the influence this man has had on so many people as he has shared his own journey with Thyroid Cancer, as he has been there to inspire and uplift others in their good days and especially during their darkest of moments with this disease. Despite the many difficulties he was going through himself, Rob’s thoughts always seemed to be towards his fellow thyroid cancer survivors and what he could do to help them. He was the leader of the pack and truly the “one” who always put others needs ahead of his own.

So what exactly defines a cancer warrior? I think that all who are touched by cancer in one way or another are warriors, whether you are the one going through it, family members, friends and even the doctors themselves trying to battle this beast of a disease that sometimes seems to have no end. The struggles of these brave souls are many with what cancer puts them through both physically and emotionally. Those going through cancer each have a story to tell. Although every journey is different, cancer survivors have such a common bond in relating to one another and being able to support each other in this fight, which is why support groups are so important.

I met Rob through the Light of Light Foundation Facebook support group. Through these online forums I have been able to gain more knowledge and understanding about thyroid cancer and its effects. As I have mentioned in previous blog posts for the first year after my diagnosis I felt like a little lost puppy not knowing how to navigate my way through this disease. However, when I stumbled upon these online support groups I felt as though a weight was somehow lifted and that I could see a light at the end of the tunnel after all. The knowledge gained through these forums has taught me what questions I need to be asking my doctors and the skills necessary in learning how to advocate for myself. I am truly grateful that I have been able to have that support from someone who gets it as they are living through it and walking in similar shoes.  I have been able to develop many lasting friendships with those in the online support groups; although I have never met many of these people in person we are uniquely bonded together by similar circumstances.

With that being said what I want to do with this blog post is to pay tribute to one of these true warriors who has had such an impact on me as I have traveled this path. Unfortunately, Rob lost his very lengthy battle with Thyroid Cancer. He always shared his wisdom and honesty and was always straight forward about it. I think what I loved most about Rob is his testimony and faith in God. He was a man of enduring faith and was an instrument in God’s hand spreading his message of love and hope even amidst the darkness that this disease can put on a person. Here are a few lines of what Rob spoke about in our discussions that I want to share as they have such great meaning to me and are pretty powerful.

“Cancer is a hard diagnosis. But many have lived with it as a chronic illness for years. Even a stage 4 diagnosis is not a death sentence. ( I really thought that I did receive a death sentence with my Stage 4 diagnosis, but Rob has taught me to see things in a different light)

“I will tell you that fighting cancer begins in the mind. If you lose the mental battle with it, your body won’t be far behind. So wake up each day and be determined to live your life to the fullest.. and choose to beat it. I know there are bad days of pain, new things that pop up, and new things that can worry you every single day with this cancer. But take it a day at a time, and do not let it control your life. Remember, you have cancer, it does not have you.”

“ I do what I always do–I choose to pray. I know this battle ultimately resides with God. It’s His to fight in the end. All of us are merely renting these bodies and they will all break down over time………

Ecclesiastes 3:1 says:” there is a time for everything and a season for every activity under the heavens”

If you are in a healthy season, enjoy every minute of it. If you are not healthy, embrace that too. Because in these deep furnaces of affliction, God will infuse you with iron and you will be able to withstand anything. “

“It matters when you are put into the fire, because it withstands despite the heat. So embrace your sufferings if you can.. you will learn the most during this time about yourself, and God does His most precious works in you when you are being refined in the fire.”

 

One other amazing quality that Rob had was his talent and passion with photography and here are a few pictures of how he captured nature’s beauty. The first is a favorite of mine and words that I now live by which Rob taught me.

 

Rob

 

 

 

 

 

Every season

Be Still

 

 

 

 

 

 

Sunrise

 

Pier

 

 

 

 

 

Rob would often speak about the things that just stick with you forever and how serving in the Marine Corps helped to prepare himself to have the fight and attitude to win the battles of life. Without a doubt those marine experiences did prepare him for this war and battle with cancer.

 

Rob4

 

Another important quality that Rob demonstrated was the deep love he expressed for his wife and beautiful children. It was very obvious in the way that he spoke of them and proudly shared pictures of them with us. He taught his children well and I was so impressed when his son Andrew, wanted to do his part in helping his dad fight this disease when he did a triathlon last year to raise funds for research and had raised over $7000. The apple surely doesn’t fall far from the tree there. The impact of one small little boys’ wish was great and I am sure that Andrew is going to do great things and make an impact on the world, just as his dad has.

Rob was there for others sharing his love for God and his testimony of faith through his actions. Here is a short clip of of how he shared his cancer journey and his faith which was done about a year  ago and and I will let this video speak for itself.

 

One song that comes to my mind when I think of Rob is by Kutless entititled “Even If” which is a video with lyrics that I want to share:

 

 

Although the healing just did not quite come for Rob and yet in the midst of all the suffering he went through, he still knew who God was and chose to have gratitude even with the trials and challenges he was facing. He was one extraordinary man teaching others what it means to endure to the end.

It just seems so surreal and I can’t believe I will not be able to have conversations with Rob again. He was there providing such wise words of wisdom and I could always count on Rob to lift me up  and give me encouragement when I was feeling down. The ThyCa community has been greatly affected by loss of this amazing individual and his death is greatly felt among us.

I look forward to the day, as do many others when we can see and talk with Rob on the other side to tell him face to face just how much he influenced our lives. Rob was such a true warrior in every sense of the word and fought this fight to the finish; this brave soul may be gone, but he will never be forgotten!

gone-but-never-forgotten

The Injustices of Cancer

I have been truly appalled and infuriated by the recent article in the Huffington Post entitled “The 6 Injustices of Cancer” and many of us in the Thyroid Cancer community are no longer going to “sit down and be quiet” as was stated in the article. We are going to tell the world about our stories and experiences of what it is like to live without a thyroid and that this is NOT the “easy” cancer as has been portrayed by so many. So here is the link to the article from the Huffington post that all readers can understand what has me in such an uproar. Some of her points are valid but #5 has struck a nerve with me and many other thyroid cancer patients.

http://www.huffingtonpost.com/cindy-finch-msw-licsw/the-six-injustices-of-can_b_6573648.html?fb_action_ids=10206283269346550&fb_action_types=og.comments

 

Sure some thyroid cancers are “treatable” but there are those which are not and some which are incurable. It comes with it a lifetime of continued surveillance and yes a very high rate of recurrence. I had a very aggressive tumor which has required more than just having my thyroid removed and swallowing that little tiny pill every day and I then I am golden. That can happen for some which can be great if you are one of the so called “lucky” ones, but for others myself included, it is far from it. Over the last 4 years I have had to live with the fact that I still have remaining cancer residing and housing in my body, sure it is slow growing, but it is still cancer nonetheless. Let me enlighten you on what it has been like to live without a thyroid and the multitude of challenges I have had to face.

So here is a brief snapshot of my journey thus far:

I was diagnosed in 2011 with Stage 4 Papillary Carcinoma with Follicular Variant. Oh yes, there are four flavors of this cancer: papillary, follicular, medullary, and anaplastic. With papillary, there is such a garden variety with many differing subtypes which include columnar, diffuse sclerosing, follicular variant of papillary, Hürthle cell, and tall cell. When I was diagnosed I was ripped from my family for months, taken away from I job that I loved as I was living overseas at the time and had to be transported back to the United States without my family in order to get proper care. I had a very aggressive tumor that was not encapsulated within the thyroid, but spread to many lymph nodes. I had my total thyroid removed along with a right and left neck dissection, in surgery for over 7 hours with 58 lymph nodes removed and 19 which were positive for cancer. My surgeon had to leave cancer in my body on my nerve that controls my voice. I had to ingest the Radioactive Iodine I-131 in hopes that it would eradicate the remaining cancer. However, it never worked as I am iodine resistant. About nine months after my thyroid was removed, I underwent an unsuccessful 2nd neck dissection to try and remove the remaining cancer on the nerve that controls my voice, but they couldn’t contain it, because it was embedded under very extensive scar tissue. The decision was made to leave the nerve intact and watch with close surveillance having ultrasounds every 6 months, having blood work every 8 weeks in an attempt to get my TSH (that is my thyroid hormone) in line where it needs to be; it has been such a struggle and after four years of trying drug after drug we now have achieved that. During this whole time of surveillance I always wait and wonder each time I have that ultrasound if there is going to be further spread to other areas of my body. I depend on daily thyroid hormones that have required very high doses in order to keep the cancer from spreading further. Those high doses have come with many side effects from my hair falling out, extreme fatigue, memory issues, weight gain, the list goes on….

Now after 4 years my medical teams are still trying to determine the best course of action on how to deal with this remaining metastatic cancer on my laryngeal nerve. Another surgery provides many risks which can include potential damage to my laryngeal nerve resulting with problems of not being able to speak, Radioactive Iodine treatment is out because of my body not being able to absorb the iodine, they could possibly do procedures where they can inject ethanol alcohol or use radio-frequency beams into the nodule on my nerve with the hope that it will kill those remaining cells, but still no guarantee that it will work, and then of course the option of still doing nothing and just playing this continuing waiting game in hopes that it doesn’t grow even further.

In addition, there are other things which I have had to deal with such as extremely high heart rate and palpitations and feeling like my heart is going to leap out of my damn chest which resulted in having to take another medication to keep the heart rate down to a decent level. This was all due to having to be kept so suppressed in order to keep the cancer cells from growing and spreading further. On top of that I have an autoimmune disease called Hashimotos that attacks the thyroid in which I have antibodies that can make it more challenging for my docs to know exactly what my tumor markers are. These antibodies make that test less reliable. Although I no longer have my thyroid it still presents challenges. Moreover, my daughter also has the Hashimotos disease as well and I worry constantly if this so called “good cancer” is going to strike her as well! In addition, through all of these treatments I’ve had to endure it has put our family into near bankruptcy.

We don’t get any benefit of big cancer organizations that helps with research of this cancer which is becoming increasingly prevalent. It all comes from private organizations as there is no help from government entities or anything like the American Cancer Society that funds research in finding a cure for this nasty disease! It comes from cancer patients themselves who do everything they can to raise awareness and funding for research.

I think the real injustice here is when myself and many other thyroid cancer patients are left feeling that these thoughtless and insensitive comments as was stated in this article belittle and diminish our journey, just because we typically don’t endure harsh chemo treatments. However, in very advanced thyroid cases that is what sometimes has to be instituted.

Now that I have had time to cool off, I think instead of lashing out that I use this as a way to educate others and I hope that other thyroid cancer survivors will join me in doing the same in bringing about awareness of what it is truly like to live without a thyroid and I encourage others to get their neck checks. Ensure that your doctors are doing these neck checks; if they are not call them out on it and demand that they do their job. The statistics for 2015 show that 62,450 people will be diagnosed with thyroid cancer in the United States, although it is slightly fewer than the 62,980 in 2014, deaths from thyroid cancer will increase by 3% to 1,950, up from 1,890 in 2014 (Thyroid Cancer Survivors’ Association). I surely don’t want to be one of those death statistics and would not wish this disease on anyone. Simply put CANCER IS CANCER and none of it is good period!

No good cancer pic