Knowledge is Power!

I was fortunate enough to attend the Thyroid Cancer Survivor’s Association’s annual conference which is in its 17th year that was held on 17-19 October in Denver, CO. What a truly amazing experience and something which any thyroid cancer survivor can benefit from attending at least once. It’s not only the information gained about this disease, but those connections with other people who are facing similar circumstances. It was great being able to actually talk and meet those in person whom I have been communicating in the online support forums with.  I just love meeting new people and hearing their stories of where they have been in their journey; we really do learn from one another.

For the very first year after my diagnosis I really felt like I was up a creek without a paddle. I had no idea of how to steer my way through this cancer diagnosis. The only support system I had was my immediate family who did their best to provide that assurance to me that I was going to be ok. However, it would have been a much easier journey had there been someone I could talk and relate to who knew what I was going through and experiencing. At the time of my diagnosis, I was going in between having to be rushed out of Japan back to the United States in order to get good medical care, being separated from my immediate family for many months and then returning back to Japan for only a short time as then our family was transferred back to the United States for my husband’s job just so that we could be near some good facilities for my follow-up care. After our move to Colorado, I was able to learn about the local support group which I found out about from a flyer which was in the endocrinology office. So I thought to myself, what the hell I might as well kill two birds with one stone. So after one of my medical appointments I decided to stay a bit longer in Denver in order to attend the support meeting. Was that ever a good decision as the support group has been such a lifeline for me. It has helped me to know what is and is not normal and the questions I need to be asking my doctors. More importantly they are truly a wonderful group of people that I now call my dear friends. I would have to say that the majority of what I have learned about this disease has come from support groups, both local and online. Our doctors simply don’t have the time to tell us everything we need to know about our disease and why we need to be our own advocate and educate ourselves.

With that being said the support groups have spoken very highly of attending this annual conference that the Thyroid Cancer Association has every year. This is a conference where they have experts from all over the country come and talk about various topics. It is at a different location every year and this year it fortunately was held in Denver, so I was able to attend. There is new information that is evolving all of the time as researchers find new ways of treating this disease. The conference was full of so many wonderful speakers  with doctors from all over the country from some of the top cancer centers such as MD Anderson, Memorial-Sloan Kettering, John Hopkins, Massachusetts General…….the list just goes on and on.

The topics which I was most interested in were other treatment options for those with advanced disease that have failed traditional treatments with radioactive iodine. I wanted to educate myself about the chemo drugs that are being used in clinical trials that have had success. This will be the next step for me when this watchful waiting approach will no longer hold for me. My medical team will have to determine whether surgery is still an option, but I do understand that it might not be feasible, because of where my cancer is still located. It could possibly be too risky, but that is a decision which my surgeon will have to assess, but something that we will do together. I am fully aware that my cancer will grow at some point in time; we may need to explore other options and I just want to be prepared for what lies ahead.  It was quite interesting to hear these doctors explain about the different chemo drugs that are successful, but they also explained in great detail the science in how they work in a language that was easily understandable. I was able to gain knowledge about the different mutations and what specific drugs are being used to target these mutations. In addition, I learned about a clinical trial that Memorial-Sloan Kettering is working on to reverse the effect so that those of us who are RAI refractory can then have the ability to take up the iodine so that type of therapy can then be utilized.

One amazing speaker Dr. Steven Sherman, chairman from an organization called ITOG (International Thyroid Oncology Group) talked about the group and what their mission and purpose is.  This is a collection of scientists, doctors and patient volunteers in which they focus on identifying new therapies for thyroid cancer and improving patient experiences. More information can be obtained at their website:

http://itog.org/

The Dinner/Auction was a very fun night. At the live auction someone had offered to do a dance on the table to get people involved by pulling out their pocketbook to raise funds for research and throughout the night over $35,000 was raised for thyroid cancer research. One of the great doctors was honored for his work and support of all thyroid cancer patients, Dr. Bryan Haugen, who is such an amazing man! In addition, there was dancing which was a total blast and I think was just a fun night where we could all relax a bit and not have to think about cancer, but just to have some good old fun!

Overall, there were more than 600 people from the US, Canada, and United Kingdom which attended the ThyCa conference this year and from what I hear it was the biggest attendance on record! So much information was gained at this conference, but the key message that I want to get across to people is to educate, educate, educate yourself about your medical conditions and be aware of your own body, so when you see those red flags come up that you need to take action, because for some it is just too late. What I think is the big take away here is that knowledge is a powerful tool that we can utilize and something which needs to be shared which is why I continue to share what I know about this disease. I came across this quote that I think is very fitting:

 

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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!

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