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!

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!

 

 

Back in Japan

I had my letter from Nuclear Medicine that stated I had been given RAI if I set off the monitors in the airport. I left Utah on May 27, 2011 and I was never happier to board a plane and be on my way back to my family. That was such a happy day to finally be on the land of Japan once again! However, I did have to spend the night in Haneda as I didn’t quite make it for the last flight to Misawa; the next morning I arrived in Misawa. Oh, how I missed all the green and beauty of Japan and the people. Finally, I was back with my family! When I came back, my husband would hardly let me out of his sight. I can’t blame him though, that separation was really difficult, and I guess I would be doing the same thing if roles were reversed.

Little did I know, that my arrival back in Japan would be short-lived. We knew with my cancer diagnosis and the fact that we were due to rotate back to the United States, that we could be leaving Japan shortly. I came back to Japan at the end of May and we got orders in July to transfer back to the state of Colorado. That was not too far from our family. I was very sad to leave Japan as I had just returned! It is just so heart wrenching having to say goodbye to so many good friends. So now we had to get ready for the move and I started going through all our belongings and trying to discard out old things. How do you discard thirteen years’ worth of belongings? We were busy over the next few months getting ready for the move. Finally, with much reservation I put in my resignation for the schools; they had held my job for me and I was ready to start substitute teaching again!

 

 

Preparation for RAI (Radioactive Iodine) Therapy

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

Endocrinology Evaluation

Next, in my treatment plan was to see the endocrinologist at the University. He explained that we were going to try the RAI (Radioactive Iodine) treatment first, but there was a problem. Since I had a CT Scan with contrast before coming back to the states, I would have to wait two more months before I was able to receive RAI (Radioactive Iodine) as the contrast will interfere with the RAI and I need more time to get that contrast agent out of my system so that the RAI would be effective. That was another devastating blow to me as I wanted to get back to my family! Unfortunately, my husband’s company would not authorize sending me back to Japan and then to return back for the Radiation Iodine treatment and so I had to stay here in the United States until I was able to receive my treatments.

Final Pathology

They sent me home with one drain in place and I had to strip the drains and record the amount of fluid which was draining. It was a bit awkward having this drain pinned to me, but I managed to deal with it. In addition, when I was discharged I no longer had to follow the non-fat diet and I consider myself pretty fortunate as I know other people have not been so lucky and have required further surgery to correct the issue with a Chyle leak.

I had ice packs on my neck which really helped with the pain and the swelling. I saw the doc about ten days later on March 2, 2011, to get the drain taken out and received the final pathology report. I was told by Dr. Bentz that I had Stage IVA Papillary Thyroid cancer with Follicular Variant. It was partially encapsulated as it was not completely contained in the thyroid and extended into the lymph nodes. They had removed over fifty-eight lymph nodes with nineteen of them being positive for cancer! I also had evidence of Hashimoto’s Thyroiditis, which I would not learn until much later down the road. The surgeon said that it was very aggressive and then informed me that External Beam Radiation may be required to totally eradicate this, but that RAI (Radioactive Iodine treatment) would be tried first. Please make a note that I will avoid External Beam like the plague – I believe that there are too many more risks involved with that which I am not sure that I would be willing to take; however, it would have to be the very last option for me!