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

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

 

 

 

 

 

 

Awareness Wrap-up

So with the close of Thyroid Cancer awareness month I have been reflecting on my efforts to raise awareness of this cancer. Throughout the month of September, I posted thyroid cancer facts each day on my Facebook page to make my friends and others aware of what thyroid cancer is and how it can affect one’s life. I believe it did bring about awareness; some friends were not even aware that I had cancer and others became more aware of the effects that thyroid cancer can cause. What I hoped to gain from my efforts in this awareness campaign is for people to be informed and be more educated about thyroid cancer; to not only understand what the immediate effects are, but also those long long-term effects as well.

One other very important message that I want to convey to people is that Thyroid Cancer is NOT THE GOOD CANCER! Many survivors hear this far too often; they are told phrases such as you have the “good cancer” or this is the “best kind to get.” People may think that they are trying to be reassuring, but this is clearly is of no help. Those with Thyroid Cancer have to deal not only with surgery and radioactive iodine treatments, but there are the long-term implications as well. It is a lifetime of medication adjustments which come with many side effects such as fatigue, weight gain, brain fog, joint pains, hair falling out – the list is continuous.

One minute you may feel like you are flying higher than a kite with your heart racing a thousand miles a minute; then, the next thing you know it is like you can barely drag yourself out of bed; it is such a fluctuation of highs and lows. The effects of trying to get your body to adjust to the thyroid medications can prove to be difficult as many of the drugs contain fillers or additives that some people can’t handle or react badly to. Not everyone reacts or responds the same way. I have struggled over the last three years to get the right balance of these important hormones and still not quite there yet! However, I think we’ve finally found a drug that has had the least amount of side effects (Tirosint) and now we’re just trying to find the correct dosage that works for me. These synthetic hormones just have no comparison and if I could have my thyroid back without the cancer I would do it in a heartbeat!

In addition, there are the side effects of radioactive iodine ablation, or if you are one of those few whose cancer is so advanced and your only options left for further treatments are external beam radiation, or chemotherapy and then that becomes a whole new ballgame. Bottom line is that there is NO GOOD CANCER period!

No good cancer pic

I do want to share with you this amazing video of my friend Rob Bohning and his perspective of what it is like to live with an advanced stage of Medullary Thyroid Cancer. He has been such an inspiration for me and many other thyroid cancer survivors and is the perfect example of enduring faith! I have so much gratitude for my thyca family; although we are not blood related we are all brothers and sisters that support, educate and lift one another up through the most difficult challenge in our lives, just as any family would do.

http://www.multivu.com/players/English/7080731-astrazeneca-amtcsupport-resources-for-advanced-medullary-thyroid-cancer/

Thyroid Cancer has taken a lot from me. It has taken my thyroid gland, 2 parathyroids, and many lymph nodes. I have had 2 cancer surgeries and radioactive iodine ablation treatment. It took me away from a job that I loved and something I’ve had to work hard to get back to, it kept me separated oceans apart from my family for 6 months; as I was receiving my cancer treatments back in the United States my family was dealing with living through a natural disaster with the Japan Earthquake & Tsunami. It was such a gut-wrenching feeling not knowing if they were dead or alive and something I don’t care to experience ever again. It has been countless trips to the University of Colorado Hospital for multiple ultrasounds, surgery, blood draws and radioactive iodine that never did me much good. It has been taxing on me physically, emotionally and financially.

In the same respect cancer has given me some things as well. I have drawn much closer to God and have learned to trust not only in him, but to trust that there really are good people in this world that truly do care. It has helped me to be more optimistic and to always look for the good in every situation no matter how difficult it may be. Most of all, cancer has taught me that every day is a precious gift not to be taken for granted as I know it can be taken from me at any given time.

I have really been able to understand just how our time here on earth is so limited as I have watched close friends and many others face not only thyroid cancer, but also many other deadly cancers as well which has ultimately shortened their life way before it was time. This is why it is so important to treasure every moment that you have for you never know when your number will be up. Tell the people in your life just how important they are to you, because often times you may think you’ll have time, but then that time slowly fades away and is gone before you know it.

I am truly lucky to be alive and I have my doctors to thank for that. They have been walking this journey with me and without them I would not be here writing this blog post. Nevertheless, until God says that my work here on this earth is done, I will continue to keep pushing forward, living my life to the fullest extent possible and making it my life’s mission to ensure that people are aware about Thyroid Cancer and its effects. If I can reach just one person, then I feel that is accomplishment; by making just one person aware it can cause a trickle effect of many more becoming aware. I give a big shout of thanks to all my friends and family who have stood by me through all of this! Cancer may have taken some things from me, but try as it may it will not break me! So please spread the word about Thyroid Cancer!

awareness5

 

 

Thyroid Cancer Awareness Month

Thyca awareness month

 

By now I am sure that many have seen the recent “ice bucket challenges” seen all over social media to bring about awareness of ALS, which I think is such a worthy cause; however, at the same time I sure wish that there would be something that could generate the same attention and funding for people with other cancers and diseases that have no cures. I have many friends that have advanced stage thyroid cancer and are fighting an ugly battle as well. The percentages of those with it are just not high enough for the pharmaceutical companies to set funding aside for these cancers, because they don’t have much to gain or profit from it. It is then left up to non-profit companies or patients themselves to raise the necessary funding and so their chances for a cure become greatly diminished. With that being said, September is Thyroid Cancer Awareness month and is a chance to make people more aware of this type of cancer which is becoming more and more prevalent.

There are things about this disease one should know and I have probably mentioned this before in my blog, but something that I feel is worth repeating. For those who are just starting on your journey the first thing is to ask as many questions as possible and educate yourself about this disease. Online and local support groups are great resources which can help you navigate your way through this. Next, find a doctor that you feel comfortable with and one that communicates well with you, because you want one that works with you and not against you. Ensure that you find a good endocrinologist and one that specializes in treating thyroid cancer. Many thyca survivors struggle to find a doctor that listens and takes their concerns seriously. Some doctors may say well your numbers look good, despite the fact that you tell them you feel horrible and struggle just to function. If a doctor is just not meeting your needs, time to move on and find a new one that does listen and takes into account the whole picture. I myself have been so fortunate to have doctors who truly do listen to me and my concerns. They not only ensure that my levels are good, but also consider how I am feeling as well and take appropriate measures in making adjustments as necessary. If you are not sure where to look for a good endocrinologist start with your primary care doctor and ask other survivors in support groups. One great resource that has been such a big help for me is the Thyroid Cancer Survivor’s Association http://www.thyca.org. This organization provides information about thyroid cancer along with treatment options, in addition to providing a listing of local support groups and specialists by state.

One thing that I advocate all the time and something that I cannot stress enough of is to ensure that your get your neck check at every office visit with your doctors.

neck check

Don’t ever brush off something that doesn’t feel right. You know your own body best, so when something feels out of whack or just not right, heed those warning signs that your body is telling you. Seek out your doctor and have your concerns checked out sooner rather than later. Thyroid cancers can be found on simple routine visits where doctors may feel a lump and will follow-up with appropriate tests such as an ultrasound to rule out if there is in fact a problem which should also be correlated with lab tests as well. However, a lot of the time many people may have lab tests within normal limits. I most likely had thyroid disease for years and and never knew it, because I wasn’t educated on things I should be watching for and didn’t see doctors on a regular basis. If I had, maybe my outcome could have been different, but it is what it is and I’m dealing with it the best way that I can.

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

Awareness4

Awareness

Well it is that time of year when summer ends and kids are back in school and after a nearly three-year hiatus I am back to working once again. I have started working for the local school district working with special needs children again. It is such a wonderful feeling to be back doing what you love and I didn’t realize just how much that I missed it! These children have such amazing sweet spirits that can accomplish more than what they are given credit for.

Awareness Month1

With that being said it is also Thyroid Cancer Awareness month. The history behind this awareness month is that it is a “worldwide observance, sponsored and initiated by ThyCa: Thyroid Cancer Survivors’ Association which began in 2000 as a week in September and then in 2003 was expanded for the whole month of September. Thyroid Cancer Awareness Month promotes thyroid cancer awareness for early detection, as well as care based on expert standards, and increased research to achieve cures for all thyroid cancer. People and organization in 56 countries around the world take part.

As a thyroid cancer survivor, it is my mission to spread awareness and to help others in their own journey with this disease. My hope is that this blog will get the word out about thyroid cancer, survivorship and much more. Tips which can help you to spread the word are by taking a look at ThyCa’s link on how to help:

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

Circle of Hope

Circle of Hope1

Circle of Hope2

Circle of Hope 3

One main goal of mine is to bring about awareness of this cancer. I have recently met with folks from Memorial Hospital Foundation and they do annual events to raise funds for cancer patients. All funds raised from the events goes to help cancer patients with whatever financial needs they may have. In July 2013 they held their annual “Circle of Hope” Classic 10k run in Colorado Springs. This is an event done in conjunction with the Grand Prix running club and my husband supported me in my efforts by completing this 10K run. Throughout this event I believe I was able to help raise awareness of Thyroid Cancer and if I could affect even one person to be aware of this rapidly growing cancer I feel that is success; if you touch one person’s life it can then result in a trickle effect of many more becoming aware!