A Debt of Gratitude

So it is the last day of September for thyroid cancer awareness and I just wanted to take the time to express my gratitude and pay tribute to those who have played a role in my journey. Each person that I have come across has affected me in one way or another. Even that simple gesture from a stranger in the hospital who gave me that smile as I walked the halls of the Huntsman Cancer Institute after my first surgery. It lifted me more than they will even know. Back then my journey had just begun and I know it is not over by a long shot.

Nevertheless, I have much to be grateful for. First, for the warriors who have gone before me and branded me with the knowledge about my disease and how they have taught me to fight and to never give up. They have shown me just how ugly this disease can get as I have watched many of these beautiful souls, my fellow thyca warriors battle this to the end. Although the cancer may have taken their life they have shown me to never let it break their spirit!

Next, my deepest gratitude to my amazing medical teams from my surgeons, endocrinologists, radiologists, nurses, lab and radiology techs and even those who schedule my appointments. Their efforts do not go unnoticed. Every single one of them has played a crucial role in this journey of mine. When my body failed to respond to the standard therapies in treating my type of thyroid cancer, my doctors had made the decision to essentially not treat the cancer, but instead they have closely monitored me for further progression as it is a slow-growing cancer. It took me quite a long time to be okay with that decision as my thoughts were that I just wanted this cancer out of me pronto! However, with a lot of patience on their part they have helped me to truly comprehend why this was necessary in order to give me a better quality of life. I am sure it is never easy on them when they have to make decisions like that, especially when they have a situation where the treatments they can offer could possibly harm their patients even more. I could not even begin to imagine what it must be like to walk a day in their shoes and the decisions they have to make on a daily basis, nor would I even want to try. Nevertheless, I am forever grateful that my doctors did not rush into treatments which could do more harm than good. They have demonstrated to me just how much they truly do care what happens to me. Thanks just doesn’t ever seem to do it justice for everything they have done for me so that I can have the best outcome possible, but I hope they know just how much they are truly appreciated. They are my heroes and without them I wouldn’t be where I am today!

I am so fortunate and grateful that I have had such competent teams, because I know many out there who struggle to find such good medical care. You need to be on the same page with your team, and yes you should be part of that team effort in making decisions. I have been so lucky to have such good medical teams that have that kind of mindset and work together as a collective team to find solutions to issues that arise. Throughout my journey I’ve had to travel many miles to get good care. First, I had to be sent oceans away from my family in order to get the proper care I needed. I was living overseas in Japan at the time of my diagnosis and was sent back to Utah, to the Huntsman Cancer Institute to get properly diagnosed and treated. Then, when we moved to Colorado, I had to travel again to get the best care possible and it has been so worth the time and expense to do so.  My advice to those just starting their journey, do your homework to find the doctor that is right for you, especially your surgeon. It is so imperative to have a surgeon that has a lot of experience and is well versed in thyroid cancer. Find a support group, as they can give you recommendations and can help you to tap into your resources, for there are many!

Next, a thank you to all of the researchers out there who are tirelessly working around the clock to find a cure for this disease that affects so many people! It is so important that we support research and why funding is such a necessary component. We don’t get funding from big pharmaceutical companies because we are a small population and they don’t have a big monetary gain from us. Most of our funding for research comes from organizations such as ThyCa – Thyroid Cancer Survivor’s Association Inc. or Light of Light Foundation and other private donors . We need everyone’s help to support in those efforts so that we can find a cure for all!

Last of all I want to express my gratitude to my friends and family who have stood by my side as I have faced the biggest trial in my life in facing cancer. They have kept me grounded and give me the reason why I continue in this fight against this relentless enemy.

My final message is this, I encourage everyone to develop an attitude of gratitude and take the time to thank those who have helped you in your life, whether you have faced a trial such as cancer or even when you are just trying to do those little day to day things. We can all do our part and pay it forward in thanking someone today. A simple gesture of saying thank you could make someone’s day seem a little bit brighter. You can be the difference!

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As this thyroid cancer awareness month comes to a close it does not stop there, we still keep on fighting this battle and continue to raise awareness for a disease which is becoming more and more prevalent. We as survivors are forever grateful for those who keep us going and motivated to keep driving on, never giving up hope and praying for a cure for all one day!!

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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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A boy and a dream…….

This one is too good not to share and I don’t think that my good friend would mind me posting this on my site. An 8-year old boy named Andrew had a dream to do something in which he could help his dad, Rob Bohning who is fighting a rare and incurable Stage 4 Medullary Thyroid Cancer. His idea was to participate in a kid’s triathlon in order to raise funds to help those with this type of thyroid cancer. There is very little funding for research because there is such a small population of those who have it and those pharmaceutical companies don’t have much to gain to fund research for this. So it is up to non-profits and patients themselves to raise funds to research this cancer. It started out as a small dream, but something which turned out bigger than you would imagine. In just a short few weeks’ time, this little boy’s dream was brought to reality and was able to raise nearly $7,000 to research Medullary Thyroid Cancer.

I would have to say that the apple surely doesn’t fall too far from the tree as Andrew has learned well from his dad what it means to persevere and to give everything all you got. Rob Bohning has been such an inspiration for me as well as many others, and who has the drive and determination to keep fighting a disease that thinks it will override him, but time after time he has proven to cancer that it WILL NOT WIN! Here is the Facebook link which chronicles this boy’s wonderful dream that has been brought to light:

https://www.facebook.com/AndrewsTriathlon4Daddy?ref=br_tf

As I am writing this, Rob is back at MD Anderson with yet another operation so that doctors can do what is necessary to slow the progression of the cancer. Nevertheless, I am sure that Rob’s Marine training has paid off in helping him to fight yet another war. I pray that God continues to watch over Rob and the many other true cancer warriors who continuously teach us what it means to conquer and overcome and to NEVER surrender!