The Injustices of Cancer

I have been truly appalled and infuriated by the recent article in the Huffington Post entitled “The 6 Injustices of Cancer” and many of us in the Thyroid Cancer community are no longer going to “sit down and be quiet” as was stated in the article. We are going to tell the world about our stories and experiences of what it is like to live without a thyroid and that this is NOT the “easy” cancer as has been portrayed by so many. So here is the link to the article from the Huffington post that all readers can understand what has me in such an uproar. Some of her points are valid but #5 has struck a nerve with me and many other thyroid cancer patients.

http://www.huffingtonpost.com/cindy-finch-msw-licsw/the-six-injustices-of-can_b_6573648.html?fb_action_ids=10206283269346550&fb_action_types=og.comments

 

Sure some thyroid cancers are “treatable” but there are those which are not and some which are incurable. It comes with it a lifetime of continued surveillance and yes a very high rate of recurrence. I had a very aggressive tumor which has required more than just having my thyroid removed and swallowing that little tiny pill every day and I then I am golden. That can happen for some which can be great if you are one of the so called “lucky” ones, but for others myself included, it is far from it. Over the last 4 years I have had to live with the fact that I still have remaining cancer residing and housing in my body, sure it is slow growing, but it is still cancer nonetheless. Let me enlighten you on what it has been like to live without a thyroid and the multitude of challenges I have had to face.

So here is a brief snapshot of my journey thus far:

I was diagnosed in 2011 with Stage 4 Papillary Carcinoma with Follicular Variant. Oh yes, there are four flavors of this cancer: papillary, follicular, medullary, and anaplastic. With papillary, there is such a garden variety with many differing subtypes which include columnar, diffuse sclerosing, follicular variant of papillary, Hürthle cell, and tall cell. When I was diagnosed I was ripped from my family for months, taken away from I job that I loved as I was living overseas at the time and had to be transported back to the United States without my family in order to get proper care. I had a very aggressive tumor that was not encapsulated within the thyroid, but spread to many lymph nodes. I had my total thyroid removed along with a right and left neck dissection, in surgery for over 7 hours with 58 lymph nodes removed and 19 which were positive for cancer. My surgeon had to leave cancer in my body on my nerve that controls my voice. I had to ingest the Radioactive Iodine I-131 in hopes that it would eradicate the remaining cancer. However, it never worked as I am iodine resistant. About nine months after my thyroid was removed, I underwent an unsuccessful 2nd neck dissection to try and remove the remaining cancer on the nerve that controls my voice, but they couldn’t contain it, because it was embedded under very extensive scar tissue. The decision was made to leave the nerve intact and watch with close surveillance having ultrasounds every 6 months, having blood work every 8 weeks in an attempt to get my TSH (that is my thyroid hormone) in line where it needs to be; it has been such a struggle and after four years of trying drug after drug we now have achieved that. During this whole time of surveillance I always wait and wonder each time I have that ultrasound if there is going to be further spread to other areas of my body. I depend on daily thyroid hormones that have required very high doses in order to keep the cancer from spreading further. Those high doses have come with many side effects from my hair falling out, extreme fatigue, memory issues, weight gain, the list goes on….

Now after 4 years my medical teams are still trying to determine the best course of action on how to deal with this remaining metastatic cancer on my laryngeal nerve. Another surgery provides many risks which can include potential damage to my laryngeal nerve resulting with problems of not being able to speak, Radioactive Iodine treatment is out because of my body not being able to absorb the iodine, they could possibly do procedures where they can inject ethanol alcohol or use radio-frequency beams into the nodule on my nerve with the hope that it will kill those remaining cells, but still no guarantee that it will work, and then of course the option of still doing nothing and just playing this continuing waiting game in hopes that it doesn’t grow even further.

In addition, there are other things which I have had to deal with such as extremely high heart rate and palpitations and feeling like my heart is going to leap out of my damn chest which resulted in having to take another medication to keep the heart rate down to a decent level. This was all due to having to be kept so suppressed in order to keep the cancer cells from growing and spreading further. On top of that I have an autoimmune disease called Hashimotos that attacks the thyroid in which I have antibodies that can make it more challenging for my docs to know exactly what my tumor markers are. These antibodies make that test less reliable. Although I no longer have my thyroid it still presents challenges. Moreover, my daughter also has the Hashimotos disease as well and I worry constantly if this so called “good cancer” is going to strike her as well! In addition, through all of these treatments I’ve had to endure it has put our family into near bankruptcy.

We don’t get any benefit of big cancer organizations that helps with research of this cancer which is becoming increasingly prevalent. It all comes from private organizations as there is no help from government entities or anything like the American Cancer Society that funds research in finding a cure for this nasty disease! It comes from cancer patients themselves who do everything they can to raise awareness and funding for research.

I think the real injustice here is when myself and many other thyroid cancer patients are left feeling that these thoughtless and insensitive comments as was stated in this article belittle and diminish our journey, just because we typically don’t endure harsh chemo treatments. However, in very advanced thyroid cases that is what sometimes has to be instituted.

Now that I have had time to cool off, I think instead of lashing out that I use this as a way to educate others and I hope that other thyroid cancer survivors will join me in doing the same in bringing about awareness of what it is truly like to live without a thyroid and I encourage others to get their neck checks. Ensure that your doctors are doing these neck checks; if they are not call them out on it and demand that they do their job. The statistics for 2015 show that 62,450 people will be diagnosed with thyroid cancer in the United States, although it is slightly fewer than the 62,980 in 2014, deaths from thyroid cancer will increase by 3% to 1,950, up from 1,890 in 2014 (Thyroid Cancer Survivors’ Association). I surely don’t want to be one of those death statistics and would not wish this disease on anyone. Simply put CANCER IS CANCER and none of it is good period!

No good cancer pic

 

 

 

 

 

 

Anger & Frustration

I have experienced much anger and frustration throughout this cancer journey, but I am now finally learning to let go of the anger, which has been weighing me down for so long. I have been angry for many different reasons – angry at God for allowing this to happen to me, angry that my cancer was not found earlier, angry that my doctors have been put in the position of making these tough decisions and something which has taken me a long time to grasp why these choices were necessary and basically angry at the world, because of my circumstances and everything that has happened. Holding these feelings of anger and resentment is something which is just not healthy for anyone. It has brought me to places I thought that I would never find myself, but yet it had happened, because I allowed it to creep into my life inch by inch which is how negative thoughts tend to take hold of us little by little. I am very lucky to have people in my life to help me to recognize this and assist me in turning things around for the better.

This has been like a dark cloud hanging over my head and now I feel like a weight has been lifted. It has been a long, hard road and I have made things harder on myself than I needed to, but do I ever do things the easy way? I always seem to have to learn those life lessons the hard way, mostly because of my stubbornness and think that I know what is best – I’m a bit hard-headed like that sometimes. Was I ever in need of a reality check and a definite change in attitude!

I have allowed this cancer to literally consume me for far too long. Moreover, I am learning that if you allow the cancer to feed on those negative thoughts and emotions, the cancer wins and to not give the cancer that kind of power! It has played some serious mind games with me and has messed with my line of thinking. I will admit that I am a control freak. I have to be in control of things and I guess that has been the most frustrating part of this whole thing. I have had absolutely no control over this, not knowing what this cancer is doing and where it is going. However, it does me no good to sit and stew over something I have no control over, but I am learning to control the things that I can and everything else will fall in the proper order that it is meant to.

This journey has also taught me a lot about faith and never before has my faith been put to the test as it has been going through this trial. Faith is having belief in those things not seen. Although I can’t see where I am going to end up during this journey, whether I am going to succumb to this cancer or die of something entirely different I don’t know. What I do know is that I have to exercise that faith and put my complete trust in God and that he is doing these things for my benefit so that I can learn and grow from this experience.

I really did rob myself and my family of precious time and enjoying life by thinking of nothing else but the cancer, which is time that I will NEVER be able to get back. I have come to realize that is no way to live; nevertheless, this is all a learning curve and I want to provide a warning to others to not make the mistake that I made by living your life from minute to minute, between each scan and test always waiting and wondering when the shoe is going to drop. I think that it can be something that can eat away at you like an acid which can only lead you on a road to nowhere fast. I truly wish someone would have warned me beforehand, but thankful that I was finally able to recognize and understand that I had to learn to let it go! When my time is up the good Lord will take me when he’s ready.