For the entire month, I will be blogging every day. I may go through my entire journey up to now, but I may also jumble it up a bit. You never know what I'll do next. :-)
Why am I doing this? Well, I want to keep this blog going, and I also really want to bring my story out a lot more. I haven't had much of a chance to do that here in this blog, since it was mainly about my journey with my mother and the rest of the sexy thyroid cancer clan. But, I also want to keep raising awareness, and I plan to do that with the blog this month, along with Facebook and Twitter posts. So, without further ado, here's my first post:
In case our readers did not know, I am a big part of a community called Dear Thyroid, a place of rants, raves, and refuge for men and women of all ages with thyroid disease and/or thyroid cancer. Anyone with a pain-in-the-neck thyroid (haha) can write a letter to their thyroid and say anything they need to say to the gland that keeps on flunking. Guest writers also appear on the site, such as doctors and nutritionists. It is a fabulous place for information as well as connecting and communicating.
Dear Thyroid is hosting the next edition of Patients For A Moment, which is a blog carnival written by and for patients. As stated on its website, the goal of PFAM is to "build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients." If you are a thyroid cancer/thyroid disease blogger and want to participate in the blog carnival for PFAM, please click here to participate through Dear Thyroid.
The theme for this month is about awareness. What a perfect day to do this! Here are the questions that were posed: How has your disease changed your view of awareness? Do you feel that raising awareness is important? Do you feel the need to educate others about your disease? If so, how do you go about it?
I love these questions.Let us tackle them two at a time, since one and two go hand in hand, as do three and four.
How has your disease changed your view of awareness? Do you feel that raising awareness is important?
Awareness can be awesome or be ridiculous depending on the methods. For example,breast cancer awareness is all over the place. While it's awesome that breast cancer is well-known and "pink" is everywhere, the ridiculous part is that it's everywhere. Companies know that they will make money off of the Pink campaign, so they make sure they put the "Pink" label or they make the color pink so that people will want to buy it and donate a portion toward Susan G. Komen. While I love how successful Susan G. Komen is and how aware the world is today of breast cancer and the dangers it holds, I despise how downplayed most cancers are. When I first heard the word "thyroid," I didn't even know how to spell it, let alone what it was. I hardly knew about my body, except for the usual girl stuff that we're supposed to know just before we hit puberty. Sad, really. From what I remember in my life, I have had three classes that deal with the body, two of which were about human development and STDs, and one was about how the body disintegrates into nothing after dying (Forensics). Learning about the different parts of the body and their functions are optional courses in high school, and usually those courses are only taken in college if you are planning on working in the medical field. To be honest, that's why I was hardly educated about my thyroid. If I hadn't been so uncomfortable and in so much pain, I would not have even gone to the doctor about it. I would have thought I was getting some kind of sore throat and been done with it. I had no idea it would turn out to be Hashimoto's, and then I would receive an ultrasound that would then show a nodule and then, bada bing! Cancer. And, to top it all off, my sister was the one who suggested the ultrasound, not my pediatrician. So, hm, what does that say about awareness? I honestly believe that, as soon as someone notices symptoms, or knows about a history of a disease of sorts, then that person should be checked as soon as they are capable. "It can wait" does not cut it with cancer, or any other type of disease. If my family had known about our apparent history of thyroid cancer, then they would have had me checked as soon as I hit puberty. And, lo and behold, they would have found my cancer a lot sooner, and I would not have had to go through all that I did in the first 2 years (I'll elaborate on that in future posts). My family had to learn about our thyroid cancer history the hard way. And I really do not want that for future generations and for other families out there who possibly have thyroid problems and do not even know it. It's a dangerous game to play, and we need to always be a step ahead of our opponent. If not, we lose. I do believe awareness is not just important, it's crucial. Not just awareness, but knowledge. Being aware and being knowledgeable are two different things. Simply knowing a disease exists is a whole different level than actually knowing the facts about said disease.
Do you feel the need to educate others about your disease? If so, how do you go about it?
Heck, yes, I do! Who else is going to do it? If everyone left it up to everyone else, nothing would be accomplished. I feel as though it's my duty, since I'm one of the poster women for PTC (papillary thyroid cancer).I also have no trouble speaking my mind (have younoticed?), so it's quite easy for me to say, "HEY! PAY ATTENTION!"
But, in all seriousness, I do feel as if it's my responsibility to spread the word about thyroid disease and thyroid cancer. Why not tell people, especially when they can use that knowledge to potentially save themselves, their family, and their friends? Even strangers deserve to know. Why would I have begun a blog with my mother to talk about every experience we have during our journeys with thyroid cancer? Why would I join organizations that spread awareness and information about cancer, thyroid disease, etc. if I wasn't going to use them to help others? I know people I don't know are reading this, and I know they are gaining knowledge that may not be useful now, but it may serve them in the future (God forbid). Now, maybe it never will become useful, which is wonderful. But, at the same time, why risk it?
Now, onto the next question. How do I go about it? Well, I have this blog, for example. I wrote everything that was bothering me while watching my mother, sister, aunt, and cousin go through their surgeries and treatments, and while waiting for the results of every single family member's ultrasound. It was a terrible experience, one that definitely makes the top ten worst events in my life. It's more than likely in my top three. It isn't enough that we have Mayo Clinic and WebMD; those websites are full of information, but not real stories. There isn't anything real aside from straight up facts. Blogs like this one bring anecdotes and real circumstances to the table. Combined with facts and information, people have something to relate to, and something with which to prepare themselves. Sure, everyone wants accurate facts to rely on when it comes to the "What do I expect?" question, but at the end of the day, I want to know what else lies behind the disease. There are so many things that could happen that we don't know about. Our doctors may tell us that something won't happen, for example, hair loss from hypothyroidism. It's an uncommon symptom, according to Wikipedia. However, just because it is uncommon does not mean it could not happen to a person. In any case, I would find real stories from real patients who have gone through the same diagnosis and struggle, and see what they have to say. That's why my mother and I keep this blog. A familial thyroid cancer cluster is uncommon. But can it happen? Well, we're certainly living proof.
I post all over Facebook and Twitter. Whenever I come across something I feel is big news or full of information that people should read, I post it. I don't care much about if I spam everyone, but if only one person benefits from my constant splatter of information all over their Home pages on Facebook, then I have succeeded in doing my job. Every single person I have met in my life, from my diagnosis date up until now, knows I had thyroid cancer. They know my story, and some if not all of the details. If they want to know more, they ask. And, what's awesome is, they usually do. I don't care if they know my story word-for-word, or if they remember a ton of the details. The point is, they will remember if someone else mentions thyroid cancer or having it at a young age. They'll say, "Whoa, my friend Dori has thyroid cancer...She was 17 when she found out." That is what I want. I want my story spread, because I want people to know that this is real. It happens to young adults. We all know about it happening to young children and older generations, but not to people between the ages of 15 and 40. No matter who I tell, I always get a shocked look or a blank one, usually out of surprise. "But you're so young..." Yep, I've gotten that, too. That proves to me that I need to keep talking. And I'll never stop.
And, as always, my dears, I wish you all love, happiness, and -- most importantly -- good health.
Like Daughter, Like Mother: Our Thyroid Cancer Journey
Behind the Blog
Adelina is a full-time wife, mother, practice manager, and medical transcriptionist. After receiving an ultrasound and countless biopsies, she was diagnosed with papillary thyroid cancer on December 11, 2009. She successfully underwent surgery on December 29, 2009, and had her first radioactive iodine treatment in February 2010. Following treatment, Adelina now sees her doctor once a year for follow-up. She has been doing well, and refuses to let cancer slow her down.
Dori is 26 years old. She was diagnosed with papillary thyroid cancer at the age of 17 on June 1, 2006, just three days prior to her high school graduation. Dori endured two radioactive iodine treatments and two surgeries to remove her complete thyroid and 39 total lymph nodes from her neck. She is now under close watch by her doctors, and only time will tell if the cancer stays at bay.