Identifiable Word

 

Some cancer patients are fortunate enough to be deemed cancer free and I think that is absolutely fantastic for them. However, depending on your cancer type recurrences can and will happen. For those with thyroid cancer, it seems there are a different set of rules as it is something which requires lifetime monitoring, because you are reliant on a tiny little pill for the rest of your life and they have to ensure that you’re getting the proper amount of thyroid hormone. Sometimes you may not get enough of the hormone and at other times you get way too much, which is why it is so necessary for continuous monitoring. In addition, with thyroid cancer the incidences of recurrences are very high. In some instances, it can recur years down the line up to 20 or even 30 years after initial diagnosis. I am nearing that 5-year mark since that pivotal moment of being told that I have Stage 4 thyroid cancer. No matter how long I have been at this, I still have those moments of anxiety. Those negative thoughts tend to creep in my head and it usually begins a month before the next scan.

Here is a bit of a recap as this past year the cancer had grown some with some increased calcification and discussions were thrown around on what to do about it. I thought that this was my chance to be rid of this enemy out of my life. However, that chance was short lived. After many doctors and experts looked at my case from every angle possible with discussions of repeat surgery, to other less invasive procedures it was decided that none of those choices were in my best interest. Surgery poses too many risks to my laryngeal nerve which would in turn affect my voice, other less invasive procedures such as alcohol ablation, or even radiofrequency ablation poses other risks as well. Essentially, because of the location of my cancer on my laryngeal nerve if they were to try those less invasive procedures it would put a hole in my trachea as there are no surrounding structures to absorb the alcohol or radiofrequency beams. My quality of life would surely go downhill mighty quick! Is that something we really want to do? I think not. It’s like you’re damned if you do and damned if you don’t. There have just not been any good answers to my difficult situation and so now we are back at square one with watching and waiting. Even though the watching and waiting is hard at times, I know I will be thanking these doctor’s years down the line for preserving my life and doing what was necessary to ensure that I would have the best quality of life as possible. I have truly been so fortunate to have such excellent medical teams who are really looking out for me!

Recently, another survivor came up with the perfect word to describe what I feel every time I get close to the next scan. He penned the term “Scanxiety” and I think it is the perfect word to describe what I feel like prior to a scan. I am glad that someone came up with a word that I can identify with. There is anxiety, but for survivors like us Scanxiety is much different. Can you imagine what it is like to feel on edge not knowing if your scan is going to be good, or whether the cancer is spreading and exactly to what extent? It can be compared to watching a football game on T.V. with your favorite team and it is down to the wire in the 4th quarter or even when the game goes into overtime. You are literally on the edge of your seat waiting to see what your team is going to do. Are they going to make that touchdown and bring your team to victory or is the opposing team going to get the upper hand and beat you? Just as with the cancer are you going to rise above this, or is the enemy going to make you believe it has you in its clinches to which you cannot recover from? For me sometimes I just wish this would all be a bad dream that I would wake up from. However, this is real life for me and something I will be experiencing for the rest of my life. I’ve been living that 4th quarter play and will be for quite some time. It is my hope and prayer that with more advances in medicine that they can and will come up with better treatment methods, or even better a cure!

Usually it is about a month prior to my scan that my anxiety level starts to kick into high gear. I guess the not knowing is the hardest part and even when you finally get the scan done then there is more waiting for the results. The technicians who take your scans and bloodwork and the doctors themselves, literally hold your life in their hands. Not worrying about what is going to come up is easier said than done. Nevertheless, it helps knowing that other survivors are experiencing the same things and can relate. Here is the blog post from the survivor who penned this term Scanxiety and I want to share it:

https://medium.com/@barryhollander/scanxiety-9e9a7fe2ee53#.5gbrm2wst

My latest scan and my thyroglobulin level (which is the tumor marker) shows stability with no further growth and I will take that as a victory! The bloodwork does show my TSH level being very low and nearly non-existent which explains why I have not been feeling great, but that just means we need to do another adjustment in my dosage. Just when I thought we reached my magic number something gets thrown off, but we will just have to keep working at it to get it right. Nevertheless, I know that my situation could be a lot worse than it is right now. I know that eventually, I will reach that point when the cancer will progress further and then some very tough decisions will need to be made on what will be the best course of action. Another thing which makes my anxiety increase further is that I have had to watch a lot of friends lose their battle to this enemy this past year and I just don’t want to be that next statistic.

Nevertheless, I am grateful for those fellow survivors who know what it is like to experience these feelings and to have someone that I can talk to who can relate. However, I know the only way to beat this cancer is to fight until the end. If you give the enemy one little inch into thinking it has the upper hand, then it wins this war! It has been through the example of other survivors who have showed me what it means to fight, to give it your all until your body literally cannot fight no more. As we face the many facets of what cancer does to us physically and mentally I am often reminded of words spoken by survivors who have been through this battle and some who have lost the battle, but their words are forever on my mind and in my heart. It is of great importance that each one of us embrace the challenges and the suffering, because that is when God does his precious work of refining us in the fire. Having said that, my cancer journey has taught me many things and I have become a stronger person because of it and would not trade this journey for anything.

I will close with the following quote and I have posted it before, but it is a favorite of mine and I believe it speaks volumes and I hope it can provide hope and light to those facing their own cancer journey as it has for me.

 

 

You beat cancer

The Tides of Change

 

Tides of Change

 

Summertime is a great time of year where we can take those opportunities to connect with family and friends and continue to do those things which help to build and strengthen those lasting relationships with one another. It is a time where we can refresh and recharge our batteries so that we can prepare ourselves for the changes which lie ahead of us. With that being said, the end of summer is also the start of a new beginning in which we can move ourselves into another direction or focus. It is also a change of seasons where fall sets in and the weather gets cooler. The kids are back in school and ready to learn as their minds are these big sponges ready to soak up information.

There is nothing constant as change, sometimes changes for the good and other times there are those changes that we don’t necessarily want but something which helps us to progress and grow. This past week has been full of many changes for me as I just started with a new position as a Paraeducator in the Autism program at an elementary school I have been familiar with, but with many new teachers and administrators. It’s been exciting getting to know them and the students and I thought that I was pretty set and ready to get the routines going on. However, God apparently has a different plan for me and I’ve found myself being moved into another direction by working with students on the high school level. This is somewhat of unfamiliar territory as most of my experience as a Paraeducator has been working with students on the elementary level. Nevertheless, working with older students has not been totally new to me as I did teach a great group of youth for my church prior to my cancer diagnosis and I thoroughly enjoyed my time with them!

So, this next week will be the beginning of other changes with a new school, new teachers, administrators and students once again. Talk about another curve ball coming out from nowhere as I truly wasn’t expecting that! Life is sure full of surprises. On the plus side the school is only five minutes from my house and I no longer have to fight the traffic trying to get into the base at Fort Carson, which is a major bonus. Moving forward this is a chance for me to develop and expand my skills. I also look at this as an opportunity to give these students a chance to prove that they are much more capable than they are given credit for. All they need is for someone to believe in them to help them to realize and reach their full potential.

There are some who may fear or resist change. Why is that? Perhaps it is because they become stuck on something; it could be good or bad past experiences. They may think that somehow things should be this way or that way and that there are no other alternatives. A really good quote that I heard recently from a very good friend:

Change Quote1

 

Are changes scary, absolutely yes! There is another quote that always sticks in my mind when it comes to change:

Always done

 

Growth and changes are a part of life; however, if you limit yourself on being able to progress you may very well find yourself being stuck and you will never know what opportunities you would have missed out on when they come knocking. Life is about the choices we make and so when those tides of change wash upon your shore, I think the key thing is to go with the flow of its direction and to fully embrace those changes!

Messages

If I have any one message to tell the world it is this – be vigilant with your own health, nothing is more important than one’s own life!

Here are some statistical facts about thyroid cancer according to the American Cancer Society:

The American Cancer Society’s estimates for thyroid cancer in the United States for 2014 are:

About 62,980 new cases of thyroid cancer (47,790 in women, and 15,190 in men)
About 1,890 deaths from thyroid cancer (1,060 women and 830 men)

“Thyroid cancer is commonly diagnosed at a younger age than most other adult cancers. Nearly 2 out of 3 cases are found in people younger than 55 years of age. About 2% of thyroid cancers occur in children and teens. The chance of being diagnosed with thyroid cancer has risen in recent years and it the most rapidly increasing cancer in the US. Most of this is the result of the increased use of thyroid ultrasound, which can detect small thyroid nodules that might not otherwise have been found in the past. Still, at least part of the increase is from finding more large tumors as well. The death rate from thyroid cancer has been fairly stable for many years, and remains very low compared with most other cancers.”

neck check

This is why it is vitally important that you ensure that your doctors are doing all the necessary screenings and above all get your neck check at EVERY visit. If you are not, demand it as your doctor is not doing their job! I really try to encourage others that if your doctor is not meeting your needs and not really listening to you and your concerns, then they don’t deserve to be your doctor. If you don’t fight for yourself who will? You are your own best health advocate and know you own body best. They key is educating oneself on things you need to watch for. If it had been stressed to me the importance of proper follow-up with my doctors and had I known the warning signs, my cancer could have probably been found much sooner and resulted in a better outcome.

The other message I would give to others is to embrace life each day as though it is your last. Make every day count and don’t let a day go by without letting those who mean the world to you know just how much you care about them. Life is just too short. You never know if there will be a time when you will talk to those you care about for the last time and not even know it. That makes me reflect on the senseless shooting tragedies in Aurora, CO and in Sandy Hook, CT. Those who lost loved ones will never get the chance to say what they really wanted to for those who meant the most to them, that opportunity was taken right out from under them and my heart goes out to all those families affected. So, I strongly urge you to take a moment today, and hold your children, your spouse and other loved ones a little more tightly and cherish that moment as that moment may slip away before you know it. There is a quote that I am very fond of which I would like to share:

Life is not measured
— Anonymous

We never know how long we have on this earthly life which is why we need to cherish and make every moment count! Every day is a precious gift we are given which I do not take for granted as I know it can be taken from me at any given time. What matters is what we choose to do with that gift and to make the most out of what we are given. For me that choice is to give unto others and why volunteer work is so important to me, especially to those fighting cancer. It is by reaching out and touching lives that our life has meaning and purpose.

Two Year’s Later

Just a few days before my two-year mark of being without my thyroid, I have now learned that Dr. Bentz is leaving the Huntsman Cancer Institute. He is moving on to another position with Fremont-Rideout Health Group in Yuba City, California. It will be a sad day for the Huntsman to lose such a dedicated professional, and I am positive that he will be greatly missed! In the same right, those at Fremont-Rideout Health Group will quickly know just what a huge asset they are gaining. I really wish him all the success in his new position and all his future endeavors.

Today, February 22, 2013 marks the two-year anniversary of having my cancer laden thyroid removed. It has been quite a ride and I have learned many lessons and I am sharing my story to benefit others who can learn to avoid the mistakes that I have made. In addition, I want to pay tribute to those who have helped me along the way and I can honor them by paying it forward in providing a ray of hope to those just starting their journey and others who are in the middle of theirs.

Follow-up Care

Even while still in the hotel, I made arrangements to set up care with primary doctors and the specialists that Dr. Bentz had referred me to. They were located at the University of Colorado Hospital in Aurora, CO. It was October 26, 2011, I remember doing the drive to Denver and it was snowing already. I ended up parking in the wrong place and found myself on the University Medical School campus as the GPS had directed me wrong.

Finally, I found where I was supposed to be and I remember thinking, wow this is a big university hospital! The patient parking was a nightmare trying to find a spot, so then I finally went and used the free valet parking service. The receptionists and nurses seemed very friendly and I felt at ease. I brought all my medical records with me, which is practically a novel in itself along with copies of all my scans that I had done. At first I was seen by the resident doctors who reviewed all my history and finally Dr. Song came into the room. I was quite impressed with this doctor and I feel very lucky to be at such top-notch facility with such an incredible doc. It is ironic that his last name is Song and since my TT I haven’t been able to carry a tune too well, nothing at all like I used to. Since having the RAI, I really had not had any follow-up scans so he ordered lab tests and an ultrasound. Dr. Song also referred me to the endocrinologists who were in the same location of the hospital.