Tribute to a Warrior

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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.

 

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Every season

Be Still

 

 

 

 

 

 

Sunrise

 

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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.

 

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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!

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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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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!

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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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Thyroid Cancer Awareness Month

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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.

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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!

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Support Groups

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I started attending meetings in Denver to the ThyCA support group (Thyroid Cancer Survivors Association) since February 2012 and they have been such a source of strength for me. I need to recognize the wonderful facilitators of this group – Carol Condit, JoMarie Bushell and Denise Rivera. These ladies have been so wonderful and welcoming. They have helped me to know the right questions to be asking and all the complex effects that this cancer has on a person. They have provided such great insight and recommendations and I am really glad that I started attending those meetings.

We are so fortunate to have one of the endocrinologist from University of Colorado Hospital, who is able to attend the meetings every few months discussing different issues and that has been so helpful to me. I know that it is a bit of a distance but it is only one day per month and I have been fortunate to schedule appointments around the same day and so it works out for me. I know many people wonder why I would travel that far just to attend a meeting, but for me it is well worth it, because I really needed that local support system to have people who can relate to what I am experiencing and to know that I am not alone in this!

I have also been online to some other support sites as well and have been able to tell others about the wonderful doctors at UCH. Such sites as Inspire, Light of Light Foundation Facebook group, and others as well and have learned so much from everyone there. It has been so wonderful to have a community of people whom you have never met, but yet they understand exactly what you are going through. Many of these individuals have been such a positive light of insight and inspiration for me. I have had to learn a lot about this disease on my own, because doctors simply don’t have the time to tell you everything. These support groups have been such great facilitators in helping others to know what is a normal thing or not and things to be asking your doctors. We inspire one another to keep up the fight and to not let cancer win!

We have lost many members to this awful cancer and yet through all their challenges and trials they continue to be such a positive influence pushing us to keep moving forward and their circumstances never weighs them down. Some of these warriors have literally been to hell and back with all that this cancer has put them through draining them physically and emotionally. Nevertheless, even in their last moments they continue to provide support and hope for others and it is my hope that I can be a light and inspiration like that for others. These support groups have been such a lifeline for me. I feel so privileged to be a part of these groups and appreciate each and every member, because we are uniquely bonded by similar circumstances; support groups are such an important component in dealing with cancer.