Fighting the fight

The best way that I can fight this cancer now is by educating people and bringing about awareness of this rapidly growing cancer which is growing at an alarming rate. However, the advice that I would give to anyone going through this journey is to not let yourself get caught up in phrases such as you have “the good cancer.” As much as people try to think that this is reassuring, clearly it is not. There is no “good cancer” period! I have heard that phrase from more people than I care to count. However, when I think about all of this really in the end do the opinions of others matter to me? I would have to say NO because I know what I have experienced and I don’t need anyone else to acknowledge or validate that. I know what this disease has done to me physically and emotionally and perhaps the real lesson I am to learn throughout this journey is to be more patient and tolerant of others. It is true that thyroid cancer is treatable for the most part, but not always the case as many, many people have lost their battle and life to this damn disease!

There are some that may believe that once you have your thyroid removed you just have to take a pill every day and that you’ll be fine and sometimes if you’re lucky enough it works that way, but not for everyone. For some, it is not an easy road by any means and why it is so important to educate others on what a thyroid cancer patient faces on a daily basis. We may look fine on the outside, but it is a LIFETIME of medication adjustments and other side effects that can result from the thyroid medications – which can make you feel like your hormones are raging out of control, to the radiation iodine treatments that we are subjected to in order to keep the cancer from returning – which sometimes has to be repeated more than once. Side effects such as fatigue, weight gain, brain fog, joint pains, hair falling out, heart palpitations just to name a few – all of which I have experienced; the list can be endless. Your body is just never the same without your thyroid and as much as modern medicine tries to replicate the natural thyroid, these synthetic hormones just don’t compare to the real deal. If I could have my thyroid back without the cancer and the autoimmune disease, I would take it back in a heartbeat!

Radiation also seems to be that gift that just keeps on giving as I have seen other effects occurring since my treatment dose. The latest is the frequent tearing from my eyes which my docs tell me is linked to the Radioactive Iodine treatment – just one more thing that I have had to deal with. For some people their only treatment options are surgery if they become resistant to the Iodine treatments which are no longer effective and for advanced cases a clinical trial with a drug that may or may not prove to be helpful in shrinking the tumors, which really only buys you a little more time. That is what has happened in my case as I am not avid for Radiation Iodine treatment which means that type of therapy is not effective. It is why my scans never showed any uptake and the reason why the Iodine treatment did not work to eradicate any remaining thyroid tissue and cancer cells as my body is resistant to it; further treatment options for me are thus limited to surgery, EBR (external beam radiation therapy), or a clinical trial drug.

Thyroid cancer has a high rate of recurrence which is why we need to be incredibly observant with continuous monitoring. I never thought that I would be facing a recurrence in such a short amount of time, but there it was staring me straight in the face! Who really knows what is in my future as I may have to face the reality of surgery again, if this nodule does continue to grow. Something I am not looking forward to as I don’t want the possibility of something going wrong, as there are always risks involved with any type of surgery. There is absolutely nothing good about any type of cancer other than it makes you shift your priorities and makes you appreciate what is most precious to you – as it can be taken away in the blink of an eye!

I’ve had survivors sharing their stories of losing friends over this dreadful disease as they simply don’t understand or can’t comprehend the effects of what it does to a person to lose a major organ that controls so much of your bodily functions. This is a time where you would think that they would be there to support you as you experience this awful ordeal, but then you only find yourself facing this difficult situation alone. You find out who your true friends really are and where their priorities lie. However, some people will just never get it unless they have experienced it for themselves which is why we have the need to educate others about this disease and just how significantly it can alter your life.

Thyroid cancer is one that I consider to be a life sentence cancer as with other cancers you can hit that 5-yr mark and can be deemed as “cancer free” but because of the high recurrence rate that happens with thyroid cancer, and the boatload of issues that it can cause with your daily life; I am not sure that it is really possible for those with thyroid cancer to ever be deemed as being “cancer free.” This is just my own opinion and perspective on how I feel about it. I guess the best that one can hope for is to have what is termed (N.E.D.) no evidence of disease and I’m hoping that one day I can be put in that category. Nevertheless, the ultimate goal is to improve our quality of life as best as possible. That is truly accomplished by having the utmost competent medical team who is looking out for YOU and I certainly have been so very fortunate to have had some of the very best teams available to me.

Recall

Now it is March 2013 and the drug company that manufactures the thyroid drug Levoxyl, which I am taking decides to recall the drug. This feels like I have just been thrown under the bus! I have been taking that drug for the last eight months with better results on my levels and I have felt better taking it versus the generic brand. So now due to the recall they will not be manufacturing the drug until mid-2014. Now, my endo is switching me to Synthroid, so we’ll see how that pans out and what side effects I get from that. One thing that concerns me is that I worry that the effects of changing meds again will push my heart rate back into overdrive again. I will have to deal with getting the right dosage once again and it’s like we are starting all over again. This is the most frustrating part of dealing with thyroid cancer. It is a roller coaster ride of getting on the right dosage of the meds without having too many side effects from it. It seems like a never-ending cycle, just when things are going good something jolts everything out of whack and it feels like you are back at square one. Time will tell and I just really hope that it all works out for me and that I can stay suppressed without too many effects from it and something that I can deal with.

RAI (Radioactive Iodine) Treatment Dose

Finally, the day came for my RAI ablation dose in May and the start of my experience being a glow bug – you don’t actually glow but some people term it like that as you are radioactive! I was given 152 mCi’s (millicuries) of Radioactive Iodine. It can come in either pill or liquid form, just depending on what the hospital uses. While in the nuclear medicine department of the hospital I was given the radioactive material in liquid form. I drank it through a straw which was encased in this very heavy metal container and here is an example of what it looked like:

 

After swallowing the liquid I walked out of the hospital trying to keep away from people as much as possible and my parents drove me home with me in the very back seat of their SUV, as I needed to be away from them as far as I could.

I had to be isolated from everyone for three days. I pretty much only went between the bathroom and the bedroom as I didn’t want to expose my parents to the radiation, even though I was told it was safe to be at an arm’s length distance from them. I thought that it was best to err on the side of caution. It was a lucky thing that my parents had a basement area with a separate bedroom and bathroom. I was nervous about what side effects I was going to experience after having received the radiation. Some of the side effects that I experienced was that I felt more tired than usual and had a metallic taste in my mouth which lasted for a few weeks. I know many people have had salivary gland issues and lucky that I didn’t experience any problems with that during and after the isolation period; however, I did ensure that I was drinking plenty of water and that probably helped a lot.

To pass the time during the isolation period, I would watch movies on my computer, read some books that I was able to finish and slept a lot afterwards as I felt extremely tired. My parents would leave my food outside the door. After about one day of that I was starting to go stir-crazy! When the isolation period was over I felt like I could finally breathe and it was wonderful feeling the fresh air outside. I remember after the isolation period, having to really scrub and clean everything very thoroughly. I finally started to feel a little more human again after I was able to stop the LID and start taking my thyroid meds again which were a few days after the isolation period was over. Did I ever celebrate being out of isolation with a crab dinner at Red Lobster and it felt like the most amazing meal I have ever had! It was about ten days after having the ablation dose that I was given the whole body scan on May 11, 2011; moreover, I did not like that scan one bit! The plate comes within about two inches from your face. I felt as though I couldn’t breathe; I am very claustrophobic and do not like closed in spaces. They had to pull me out a few times and finally they just covered my eyes and then I was able to get through the scan. The scan did not show any residual disease. About two weeks later my docs released me to go back to Japan. Was I ever glad to be going back home to Japan to see my husband and children.