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:

 

knowledge-is-power1

 

 

 

Follow-up

It is now near the end of August and time for the repeat Ultrasound. Prior to having my appointment, I was just crossing my fingers that I would have a stable exam. Luckily, it showed no growth and my Tg number was low at 0.3. Dr. Song explained that we will continue monitoring the nodule and will repeat the ultrasound in January.

Well now I am starting over with Endo number two as Dr. Lund had to go and graduate from his fellowship and has moved on to another practice. I always seem to lose the good ones! On the other hand, I now have the most amazing Endo, Dr. Mark Bridenstine, another fellow for Dr. McDermott and I hope that he will be around for a while. We went over my entire history bit by bit discussing everything and every possible scenario that could happen. He is so detailed and leaves no stone unturned. This one is definitely a keeper and I truly am blessed to have such an outstanding team of doctors. One thing that I did learn was that the reason my iodine uptake scan did not light up when it really should have, is that I am not avid for iodine and so that treatment really does me no good. I sure wish they would have made that clearer to me before, maybe they had and I just didn’t quite process it. Well this is just great, another complicating factor that makes my treatment protocol and plan even more difficult! Can I ever catch a break here?

Preparation for RAI (Radioactive Iodine) Therapy

hazard-poison-radioactive 2

Fast forward to mid-April 2011…… we now have a plan in place to finally do RAI. The endocrinologist explained about the LID (low iodine diet) and the requirements for isolation. I looked on the ThyCA (Thyroid Cancer Survivor’s) website for information on the LID and found a cookbook which was a lifesaver for me! I started prepping ahead by making meals and freezing them. I had to be on the LID for two weeks before receiving the RAI.   Once again I developed another sinus infection and unfortunately since I am prepping for RAI, I can’t even do my normal sinus rinses due to the ingredients in the rinse as it can cause a problem with RAI. I was feeling so horrible during this time, but at least my doc was able to give me some meds which helped to clear up the infection some.

While I was prepping to receive my RAI treatment, I was able to occupy my time with a few things while I was staying at my parents. I created a scrapbook of various newspaper clippings of all the events of the Japan Earthquake – something to remember what happened. In addition, going to the gym was another thing to keep myself busy. It was hard for me having to rely on other people, and felt like I was being a burden to my parent’s in having to take me to doctor appointments, taking me to the gym every day and so forth. To solve that problem or alleviate that a bit for them and me I went out and bought myself a bike. I am very independent and don’t like relying on other people as I like doing things for myself. It was great as I would ride my bike each morning to the gym, but it was actually another added bonus as a way in getting more exercise into my day. I loved doing those rides each morning and it was a really great way to start out the day.

Prior to receiving my radioactive iodine treatment I was able to visit with another familiar face from Misawa that is now living here in Utah. My friend, Ginger Anderton came to visit with me and we went to lunch at one of my favorite restaurants, Paradise Cafe and that really cheered me up. It felt so wonderful visiting and catching up with her and hearing of what has been happening with her family.

Another great thing that uplifted my spirits was receiving a care package from the students in the youth group before I received my RAI. Each one of them wrote me a letter explaining everything going on in their life and the things that they were learning. There are eighteen students in the group and I couldn’t have a better group of students; they are truly amazing and they teach me as well! It was such a joy reading each of their letters and I really needed that encouragement to keep moving forward in my treatment. In addition, they also sent me a variety of items from the 100 yen store. I love that place! It is the equivalent of a dollar store, but so much more; a lot more quality merchandise than you would see at dollar stores in the U.S.

Then, it was time to start the withdrawal off of my thyroid meds; at first they switched me from my Levothyroxine to Cytomel for a few weeks and then absolutely no thyroid meds whatsoever! Now the ensuing problems began when you are considered as being in a hypothyroid state which is low thyroid; it causes extreme fatigue, brain fog and pretty much an inability to really function. I woke up one morning and passed out, found myself on the floor of the bedroom; my face must have hit the dresser as my eye was bruised and I had a huge fat lip. I looked like someone had beaten me to a pulp. I passed out a few more times and was feeling really horrible and my blood pressure plummeted to very low levels as well. I was feeling so dizzy and lightheaded and my head felt like it was going to explode! I called Dr. Bentz’ nurse who suggested that I go see my PCP doc which would have been a bit hard being that my PCP is over five-thousand miles away! The alternative would be to go to the ER; however, I didn’t want to go and spend hours in the ER just for them to tell me to put a darn ice pack on my eye and lip!

The passing out continued over the next two weeks. I found myself on the floor several times a day not knowing how I got there, or even how long I was on the floor passed out. After the first incident my parents never found me and I never mentioned this to them either. Thank God it happened where there were no obstacles to cause any more injuries. Although I called the endo about it many times, he didn’t offer much help and said that it wasn’t related to the withdrawal off my meds. However, I really think it was the combination of things: being on the low-iodine-diet, the withdrawal of meds and all the changes my body was going through – my body was just in major overload and I believe was just shutting down. That was truly the most miserable two weeks of my life and it was much worse than going through the surgery. I would not wish anyone to have to go through that hypo hell ever!

I have a friend who I met from the online support group, Inspire, who recently went through RAI and she wrote a poem about our medications which I thought was pretty talented and she has allowed me to post this in my story:

Ode to My Thyroid Medication

Thyroid medication, thyroid medication
Oh how much I have missed you,
I never realized how much you did
Until the lack of my thyroid tissue.

Thyroid medication, thyroid medication
There has been too much lack,
All I have done since you’ve been gone
Is lie on my back.

Tired, brain fog, I’ve been a mess,
And a ton of other symptoms
I must confess.

You are so small
I never would have thought,
That not taking one little pill
Could make my life so distraught.

Now you are back
I’m happy to say,
So please work fast
And don’t delay.

I know it takes time
For you to do your thing,
So looking forward
To the good things you bring.

Thyroid medication, thyroid medication
I have one thing left to say,
I promise to take you
Every single day.

                                   — Gina Froment