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

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

Fighting the fight

The best way that I can fight this cancer now is by educating people and bringing about awareness of this rapidly growing cancer which is growing at an alarming rate. However, the advice that I would give to anyone going through this journey is to not let yourself get caught up in phrases such as you have “the good cancer.” As much as people try to think that this is reassuring, clearly it is not. There is no “good cancer” period! I have heard that phrase from more people than I care to count. However, when I think about all of this really in the end do the opinions of others matter to me? I would have to say NO because I know what I have experienced and I don’t need anyone else to acknowledge or validate that. I know what this disease has done to me physically and emotionally and perhaps the real lesson I am to learn throughout this journey is to be more patient and tolerant of others. It is true that thyroid cancer is treatable for the most part, but not always the case as many, many people have lost their battle and life to this damn disease!

There are some that may believe that once you have your thyroid removed you just have to take a pill every day and that you’ll be fine and sometimes if you’re lucky enough it works that way, but not for everyone. For some, it is not an easy road by any means and why it is so important to educate others on what a thyroid cancer patient faces on a daily basis. We may look fine on the outside, but it is a LIFETIME of medication adjustments and other side effects that can result from the thyroid medications – which can make you feel like your hormones are raging out of control, to the radiation iodine treatments that we are subjected to in order to keep the cancer from returning – which sometimes has to be repeated more than once. Side effects such as fatigue, weight gain, brain fog, joint pains, hair falling out, heart palpitations just to name a few – all of which I have experienced; the list can be endless. Your body is just never the same without your thyroid and as much as modern medicine tries to replicate the natural thyroid, these synthetic hormones just don’t compare to the real deal. If I could have my thyroid back without the cancer and the autoimmune disease, I would take it back in a heartbeat!

Radiation also seems to be that gift that just keeps on giving as I have seen other effects occurring since my treatment dose. The latest is the frequent tearing from my eyes which my docs tell me is linked to the Radioactive Iodine treatment – just one more thing that I have had to deal with. For some people their only treatment options are surgery if they become resistant to the Iodine treatments which are no longer effective and for advanced cases a clinical trial with a drug that may or may not prove to be helpful in shrinking the tumors, which really only buys you a little more time. That is what has happened in my case as I am not avid for Radiation Iodine treatment which means that type of therapy is not effective. It is why my scans never showed any uptake and the reason why the Iodine treatment did not work to eradicate any remaining thyroid tissue and cancer cells as my body is resistant to it; further treatment options for me are thus limited to surgery, EBR (external beam radiation therapy), or a clinical trial drug.

Thyroid cancer has a high rate of recurrence which is why we need to be incredibly observant with continuous monitoring. I never thought that I would be facing a recurrence in such a short amount of time, but there it was staring me straight in the face! Who really knows what is in my future as I may have to face the reality of surgery again, if this nodule does continue to grow. Something I am not looking forward to as I don’t want the possibility of something going wrong, as there are always risks involved with any type of surgery. There is absolutely nothing good about any type of cancer other than it makes you shift your priorities and makes you appreciate what is most precious to you – as it can be taken away in the blink of an eye!

I’ve had survivors sharing their stories of losing friends over this dreadful disease as they simply don’t understand or can’t comprehend the effects of what it does to a person to lose a major organ that controls so much of your bodily functions. This is a time where you would think that they would be there to support you as you experience this awful ordeal, but then you only find yourself facing this difficult situation alone. You find out who your true friends really are and where their priorities lie. However, some people will just never get it unless they have experienced it for themselves which is why we have the need to educate others about this disease and just how significantly it can alter your life.

Thyroid cancer is one that I consider to be a life sentence cancer as with other cancers you can hit that 5-yr mark and can be deemed as “cancer free” but because of the high recurrence rate that happens with thyroid cancer, and the boatload of issues that it can cause with your daily life; I am not sure that it is really possible for those with thyroid cancer to ever be deemed as being “cancer free.” This is just my own opinion and perspective on how I feel about it. I guess the best that one can hope for is to have what is termed (N.E.D.) no evidence of disease and I’m hoping that one day I can be put in that category. Nevertheless, the ultimate goal is to improve our quality of life as best as possible. That is truly accomplished by having the utmost competent medical team who is looking out for YOU and I certainly have been so very fortunate to have had some of the very best teams available to me.