It Matters

So in a couple of days will be September, the month in which we recognize Thyroid Cancer Awareness and I will make every effort to make others aware about this disease and its effects. Like all thyroid cancer survivors, the message we want to get across is to #MakeAllCancerMatter!

We as survivors have heard it all before that we have the “EASY” cancer; however, that could not be farther from the truth. It is true that we may not always have to go through harsh chemo, or external beam radiation therapy. However, for those few with persistent metastatic disease they have to resort to these other options when traditional therapies don’t work. With medullary thyroid cancer Radioactive Iodine treatment does not work and the treatment options consist of surgery and sometimes chemo drugs in the hopes to reduce or shrink their tumors. I myself have metastatic papillary thyroid cancer with cancer remaining on my laryngeal nerve and lymph nodes. I’ve had two surgeries and Radioactive Iodine treatment which unfortunately did not work for me as my body is resistant to it, because it does not take up the iodine. I still have persistent disease and further surgeries pose many great risks which could result in the loss of my voice. We have also looked at other less invasive procedures such as alcohol ablation, or radio-frequency therapy but those pose even further risks because of the location of my cancer, as it could cause damage my vocal cords and trachea. My doctors and I have made the decision as a collective team to continue with close observation and with any luck it will not progress further, at least that is what we are hoping for. This is something that is probably saving my life and in the very least is helping me to have a better quality of life as I know it could be so much worse. If my cancer does progress, our last ditch efforts would be to institute using the chemo drugs or external beam radiation, but those will have to be my last line of defense against this disease.

What some may not be aware of is that thyroid cancer can lead many survivors into medical bankruptcy, because it is a cancer that requires lifetime monitoring. I have been in a tough situation myself with medical bills in the thousands of dollars of what has not been covered by our insurance that I have had to pay out of pocket. In addition, over the last year I have lost many friends and other survivors I know to this disease, so yes people DO die from thyroid cancer!! Although it is a small percentage it still does occur.

One thing I cannot stress enough of is to get your neck check at least annually. You can even check your own neck by doing the following, but it is always best to have your doctor check it as well:

 

Neck Check3

 

 

If something seems out of sorts with your body and the way you are feeling, always go with that gut instinct as it is usually right. You know your own body best and know when something seems off. Don’t brush it off, but have it checked out. It is better to have it be nothing than to have it turn into something else, like cancer!

I have a very good friend who unfortunately lost his battle to this disease early this year, but he always had very wise words of wisdom for me and many others. He would often tell me that “having a positive attitude will carry you farther than you can imagine – when you lose the mental battle, your body will not be far behind” and I believe that to be very true.

Although, I most likely will never hear those words “cancer free,” I do not let it get me down as I will not allow this cancer to define me. We have to make the best out of the circumstances we are given and be able learn from it. I will continue to keep putting my feet forward and live life to the fullest extent possible! As long as I have breath left in me I will keep on fighting as I will not allow this enemy to get the upper hand and win this battle!

As a thyroid cancer survivor, it is my mission to spread awareness and to help others in their own journey with this disease. I hope to continue to educate others and bring about awareness of thyroid cancer and its effects through this blog and daily interactions.

During the month of September I will be posting the hashtag #MakeAllCancerMatter to my Facebook status and invite you to do the same to your status on Facebook and Twitter to help spread awareness.

Early detection saves lives, so please join me in helping to spread the word about awareness of Thyroid Cancer!

 

http://www.thyca.org/how-to-help/awareness/awareness-tips

 

Awareness Pic2

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

 

 

No Action

So I have been on this cancer journey for a while now, four years exactly and it has been one very bumpy ride full of many different twists and turns. Today is no different as another twist is added to the story. Most cases of thyroid cancer can be treated with removal of the thyroid, radioactive iodine treatment and then a pill for the rest of your life. It seems simple enough, right? However, it has been somewhat more of a challenge in my case as I have had continuing persistent disease despite going through all the traditional treatment methods.

So this pesky cancer still remains on my laryngeal nerve which is under some fairly extensive scar tissue. Trying to make a second attempt at removing it surgically poses risks of causing injury to the nerve, which in turn could have a drastic effect on my voice; this is something that my surgeon doesn’t really want to do as he is not sure that he can get to it safely at this point. My case has also been reviewed recently by a multi-disciplinary team of doctors that included endocrinologists, endocrine surgeons, and interventional radiology and other folks to determine if other less invasive procedures such as ethanol alcohol ablation or radio-frequency ablation could be utilized. However, those procedures pose an even greater risk as it could potentially paralyze my vocal chords and put a hole in my trachea. So now the decision is pretty much to do nothing but wait. Knowing that I still have these cancer cells housing and residing in my body has been very difficult to say the least and I would do just about anything to have this cancer gone.

I don’t know if you have ever lived in the south and with the heat and humidity comes along with it all kinds of pests. One particular kind that I just absolutely loathe is the cockroach. When I lived in Louisiana it seemed like they were everywhere. It is really disgusting when they invade your house and they seem very hard to get rid of and just when you  think that you have zapped them all, another one appears. That is what this cancer kind of feels like; we’ve tried pretty much every method known to rid my body of this disease, but it just doesn’t want to leave!

So we have done this waiting and watching for the last three years and I was hoping that with these changes in the appearance of the nodule that these other additional options would be able to be utilized. I am a very action oriented person and if I see a problem I find a way no matter how, to find a solution to that problem and just plain fix it! To play this waiting game and not doing anything has been very challenging. However, sometimes the reality in life is that there are simply no clear answers, which appears to be what is happening in my case. Maybe perhaps then the real answer is that NO action is the best one of all! After talking it over with a very good doctor friend he’s made me see this with a different set of eyes by thinking in terms of the bigger picture.  He raised the following questions and something I had to think long and hard on.

  • Do you want to kill some cancer cells and assure yourself you will paralyze your vocal chords?
  • Are you willing to accept the resulting effects of what could happen?
  • Are the risks really worth it?

My entire medical team has answered a resounding NO, that they do not feel that these other non-invasive procedures are going to be of any benefit to me and it is most likely not going to extend my life by any means. Even if they did try these procedures there is still the likelihood it could come back again, especially given the fact of the aggressive tumor that I had. On the other hand, this remaining cancer could sit dormant for many years and possibly forever, so why not wait this out and save myself some heartache and grief?  The resulting effects of what could happen would make my quality of life go downhill mighty quick and why put myself in that situation? Now I think the light bulb has finally come on for me to realize the magnitude of what could happen and I am not sure that I want to expose myself to such great risks. The way my luck has been in this journey, I simply would not have a good outcome. If I am getting the same feedback from all these medical experts, it would be wise of me to listen and heed their advice.

For the longest time I always kept thinking to myself, why are the doctors doing this and not taking any action? The fact of the matter is that their inaction was indeed the best action of all! My medical teams have always done what is in my best interest  and I just didn’t even realize it until now. They have probably saved my life, or in the very least have saved me from more complications that I just don’t need; in years to come they will most likely be saying to me “ I told you so.” Sometimes it is hard to accept those tough decisions in life as we want what we want. They were giving me that tough love just like a parent has to do from time to time, no matter how painful. I am sure it is just as hard on the doctors who have to make these tough decisions and I honestly don’t know how some of them do it. One thing for sure is that having a competent team that looks out for you is so imperative; I have been so fortunate to have such caring and compassionate doctors who are concerned with helping me to survive this disease! The doctors on my medical teams are truly among the elite and pretty much the best doctors in the country, in my opinion. All I can say is that God put the right people, in the right place and at the right time, specifically for me.

So in this case, NO ACTION is the best course of action after all! As I reflect on this, I have been reminded once again of the following quote, which there is so much truth to.

 

Scott Stuart2

 

This principle was taught to me by my very good friend, Rob Bohning, who recently lost his very lengthy battle with thyroid cancer. He lived this very principle as he did not let a bad set of circumstances drive him down; instead he used it for good to help others in their path by showing others that you do beat this disease by how you live your life and the example you set. What I can do to pay it forward to honor him and what he taught me is to follow his shining example to uplift, inspire and encourage others in their journey. It doesn’t matter if you are just starting this cancer journey or have been at it for a while, you will come to appreciate the importance of having someone you can lean on for support, those who have and are walking this same road and can share with you their experiences and insight on what they have learned along the way. Moreover, you have to continue to move on and drive on with your life even when circumstances in this journey try to drive you down, because as Rob told me many times that “you have cancer it does not have you.”

I want to end this post with the following quote:

 

Get back up

 

Sometimes it takes getting knocked down a few times to stand taller than you ever have . For me the choice is very clear to “ALWAYS GET BACK UP and FIGHT ON!”

 

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

One More Year

When you think about it there are different milestones we experience throughout our lives. Some of the common ones you think of could be starting school for the very first time, learning how to ride a bike, going on that first date, attending and graduating high school and college, starting your career, getting married and having kids.  The last four years has been another important milestone for me in remaining a cancer survivor. Today, February 22nd marks the day I consider myself to be a survivor. Many cancer patients use different ways in which they recognize that they became a survivor. Some may use the day their doctor gave them that fateful news that they have cancer; others may choose to use the day that they were declared cancer free. For me, I use the day that my cancer laden thyroid was removed for good and how I recognize my survivorship. Many call this their cancer anniversary and something which should be celebrated and accumulated every year you reach that milestone.

Having the opportunity to celebrate another year of survival and reaching yet another birthday, especially when you are at Stage 4 is something to be valued. I feel so very fortunate for still being here; however, then those thoughts start swirling in my head and sometimes I wonder why I am here when others have lost their battle? I have pondered over this so many times, especially over the last year as I have had to watch some friends lose their cancer battle.  Moreover, I’ve watched other close friends lose people who didn’t even stand a chance, because they had cancers and other deadly diseases which spread so rapidly that resulted in their demise in only a few months’ time. Their life was cut so short way before it should have been.  It has been a struggle coming up with an answer as to why my life has been spared, but their life was not. So far the only thing that I can figure is that God must have a higher purpose for me and maybe there is something that I still have yet to accomplish; although, I’m not sure exactly what that is. Perhaps it is just to be there for people who are experiencing cancer whether they are a survivor or a caregiver. Knowing there is someone out there that understands what you are experiencing and can share their knowledge just might be what that one person needs. When we can begin to have an understanding of things that just don’t make sense, I believe that is the ultimate test of our faith. There is a music video from Kutless that I want to share about faith:

Never before at one point in my life has my faith been tested more than it has been by going through this cancer experience.

When I was first diagnosed I really thought my days were going to be very numbered as I didn’t understand that it was possible to survive a Stage 4 cancer. I allowed all of those doubts and fears to overtake me. The thing about fear is that it can paralyze you, if you allow it. It can prevent you from moving forward and living life as you should. I know just how crippling that fear can be; it was as though I was at a standstill for the longest time. I am truly grateful for the people in my life that helped me to realize that I had to learn to let it go; I needed to change my mindset and how I look at things. However, sometimes those fears can somehow seem to sneak back into your life when you least expect it. With the challenges I am still facing, I just have to constantly remind myself to let it go as I don’t want to go down that road again in letting it control my life.

Nevertheless, I am grateful for my fellow cancer survivors who have shared their experiences and insight helping me to really understand that I can be a survivor. Some of these survivors have literally been to hell and back again with what cancer has put them through, but yet they are continuing to stay in this fight and are winning this battle, some even 10 years, or more down the road. Being able to relate to someone else who is walking these same lines and knows the dark valleys I have experienced has been so imperative for me. My cancer support groups both local and online, have been that lifeline that I have been able to cling to. Many of them I have never met in person, but yet we have cried, prayed and laughed together through a digital world; we are all uniquely bonded by similar circumstances.

I want to express my deepest appreciation and gratitude for my outstanding medical teams who have always had my best interest at heart, even when I haven’t always understood the reasons for some of their decisions. I could not have had a better team of skilled doctors, nurses and other professionals who have dedicated their lives in the service of others. God certainly put the right people in my path who have provided me with such excellent care, but yet so much more; some of them have become such close and dear friends to me.

Being a cancer survivor has really helped me to understand and appreciate that our time here on earth is so limited and why we need to savor every moment that we have. I now place my focus on those things and the people in my life that make it worth living. One quote that truly stands out for me is this:

What matters

 

It is not about those material possessions we have in life, but what matters most is the people in our life. My family and friends are my most precious jewels in my life that I no longer take for granted. The piece of wisdom that I would like to pass on to others is with the following quote:

 

 

Opportunities

 

You never want to leave words left unsaid. Sometimes you may think you have time and then that precious commodity we call time is swept away from you, because of cancer or other situations that is something beyond our control.

One hard lesson I’ve had to learn throughout this journey is that I don’t always have control of things and learning to let go of some things has been a bit of a challenge. I will admit that I am a total control freak, and it has taken me quite some time to understand and embrace the fact that I am not always the one in control. However, what I have learned is to control the things that I can and the rest is in God’s hands. We may not always understand why things have to happen, but there is always a reason or purpose for it.

Just as precious metals are refined in the fire, so are we being refined as we face trials and tribulations. I think that is when we learn more about ourselves; at least that is what I am finding out for myself. This turbulent journey has also been one of self-discovery in realizing who I am, where I am going and just what I am capable of accomplishing. Just because I have cancer does not mean I can’t continue to live out my dreams and to see those dreams become a reality. I have come to understand that you just have to keep pushing forward and live life day by day. You do your best with the circumstances you’re given, as the attitude you carry truly does play a role in determining your destiny!

 

attitude

 

No matter what challenges that lie ahead as I continue on this cancer journey, this is something that I would not trade for anything.  I have learned so many valuable life lessons and it has helped me to be a stronger person because of it. I have met some of the most wonderful people along the way, who have truly touched my life more than they know. Moving forward, I am very appreciative of being afforded one more year of being a cancer survivor and will continue celebrating each year of survivorship as an important milestone in my life!

The Injustices of Cancer Part 2

Well this is a short follow-up to my latest blog on the Injustices of Cancer. The author of the article “The 6 Injustices of Cancer” has since edited the article and I just wanted to inform readers of my blog that the link I previously posted has been changed. However, even with that edited version I feel that the author has missed the mark here. She still states how people get off easy, which still puts across the message that there are cancers which are easy, which couldn’t be farther from the truth as there is NO easy cancer! When she still continues to state that cancer patients who don’t go through harsh treatments such as chemo and that they need to “sit down and be quiet” I feel she continues to belittle and diminish others’ cancer experience which shows such disrespect to them. I was very hurt by her thoughtless and insensitive remarks and she obviously did not do her homework very well.

We each have a unique story to tell and like I said in my previous comments is that I plan to use this as a teaching tool to not only educate others about Thyroid Cancer and its devastating effects, but also to demonstrate a united front among ALL CANCER SURVIVORS, no matter what type they have, because everyone needs to feel valued as their journey is just as important as the next person. I think there is a lesson to be learned among those in the journalism business to be careful and to choose their words a bit more wisely. On the flip side, I will be a bit more cautious on what I read and how I let it affect me! I know the living hell I have been through because of cancer and I know it’s not over by a long shot, but I will continue to keep pushing my way through it as I will not allow it to win! I will be stronger because of it!

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