Another update on the Cancer Clan. My Aunt Gracie (a non-member) is getting biopsies done of nodules in her thyroid on Monday. From what I recall, she has a goiter, but her endocrinologist (same as my mom, sister, aunt, and cousin) decided she should have biopsies just to check. If any of this information is faulty, I'll change it immediately.
So, we'll see how that goes. I'll keep you folks posted.
I was looking through my Cancer Timeline, as I call it, recently. Today, I decided to glance through to see if there are any significant dates in September. I stopped around September, and I found this:
September 19, 2007 -- Thyroglobulin results betray that there may be more cancer.
I feel kind of sad that I didn't see this until today. This post would have been much more effective yesterday, but ah well. At any rate, here are my thoughts about this.
The back story to this event is that I had my usual scan on September 5 along with bloodwork. My endocrinologist gave me scan results immediately following each time I had one, so I always had instant results. This was after my second round of radioactive iodine (RAI), so I was really hoping and praying that this scan would show up clear. When my endo came out and gave me the thumbs up sign, I cried harder than I ever have. Seth (my then-boyfriend) was with me as were my mother and sister. It was so surreal for me; it seemed like a beautiful dream. I truly didn't want to wake up.
The next week, I had been talking to my sister as she was taking me to school one day. I said, "This just feels too good to be true." She told me not to jinx it. Well, I think I had, truth be told.
When I got the call from my endocrinologist stating that my levels were high, I was very confused. I thought that scans were completely accurate. How could I still have cancer? How could the scan betray me? Where was it, then? And why wasn't it showing up on my scan?
To make a long story short (I'll elaborate later on, when I go through the rest of the story later on in the week), I still had cancer in my body. It wasn't showing up on the nuclear scan because it didn't pick up any RAI. It was what my endocrinologist calls "radio-resistant" thyroid cancer tissues. These don't respond to treatment. The only other real treatment there is is surgery. And, that's what had to happen on November 29, 2007.
The point I'm trying to make here, ladies and gents, is that thyroid cancer is a bit more difficult than we all may think. Sure, it's a better one to have than breast cancer or lung cancer, but it's still a pain in the butt cancer. Every cancer is, to be honest.
I learned a valuable lesson when this scan came through. I learned that you cannot rely on just one source of information. Folks, get ultrasounds. Get bloodwork. Get scans. Do everything it takes to get accurate results. Get multiple opinions if you feel you must. Honestly, it makes a world of difference.
I know so many cancer patients who were misdiagnosed or mistreated because they were not given the right diagnosis or given the proper treatment they needed in order to combat their disease. By the time their cancer was found and treated, they were in Stages III or IV. Don't let yourself get that far. Check your body. Know what feels right and what doesn't.
As always, I wish you all love, happiness, and -- most importantly -- good health.
Sorry, I just had to blurt that out. Totally couldn't control it. I mean, can you people blame me? :-)
Mom is up next. Truthfully, I'm pretty worried about her scan. We were told she had no spread during her surgery, but then the scan following her treatment showed some uptake (RAI cling-age) in the right side of her neck. So, I really don't know what this scan will say. Let's just hope this treatment does the trick. Unfortunately, she does have to go through the low-iodine diet in order to prep for the scan. Oh, yay. Looks like I'll be doing some baking/cooking for her when that time comes around. I know by experience that stuff sucks.
To top off this fun entry, I have my 6 month follow up with my endocrinologist mid-October. Woohoo. While I do love seeing my endo, I don't really like having the waiting game. All she does is ultrasound me (while making comments and pointing at things, all of which I despise), feel up my neck, and bloodwork me. So, yeah. It's just one of those times I dread. Who knows what all of those tests will say?
I've got a small get together to go to tonight, so I'll save my big long heartfelt sentimental post for tomorrow. Until then, my darlings!
As always, I wish you all love, happiness, and -- most importantly -- good health.
It has been forever, loves, but there is finally an update on the Cancer Clan. Janina has bravely endured 3 weeks on her low-iodine diet, and has her nuclear scan tomorrow. This scan will determine one of three things: 1) if she is clear of thyroid cancer, 2) if not, she undergoes more radioactive iodine, or 3) she undergoes another surgery. Of course, we'd all prefer #1, but if that isn't the case, then I'd much rather her go through #2 than #3. I don't think I could handle seeing her go through a second surgery. She would take it well, though, knowing her. She's braver than any woman I know. But, let's not dwell on all that, shall we?
Mom is due for her scan soon. She's going to have it on a day she's off work, so I can go with her. She told me the other day that she has to brace herself for a nap. "It's too long of a scan," she said. The scan is an hour long, and it hovers about an inch away from your face/body, and it sloooowly moves down and up your entire body.
I've had about four of those scans. They all took place in the first, oh, year and a half of my treatment, so I was pretty used to them. If I had one now I'd probably just shrug and say, "OK!" By the time my last treatment came up, I knew everyone in the nuclear medicine facility by name. They were fantastic people, minus the woman who did the faulty Geiger test on me in my previous post. And, no, I'll never forgive her for that. ;-)
Anyway, during these scans, I would be nervous, of course. They pretty much determined what my next six months, or year, would consist of. To help this nauseousness subside, I would sing soundtracks/CDs in my head. For example, during one of my scans, I went through the entire Rent soundtrack/Rent movie in my head. By the end of the scan, I had pretty much gone through the whole film. During another scan, I "listened" to the whole Wicked soundtrack. It took all I could not to smile during the scan, and it comforted me.
These kinds of things kept me going during my entire journey. Sure, I had my family, friends, and then-boyfriend, but when they couldn't be by my side during the scans and treatments and surgeries, I had my memories, my songs, my slideshows. I thought of anything and everything about these people in my life and the other things that made me happy. I would instantly come alive at the thought of any of these things, and it reminded me that, no matter what, this too would pass.
As always, sweeties, I wish you all love, happiness, and -- most importantly -- good health.
"Bringing Sexy Out of the Thyloset" For My Friends at, and the Fans of "Dear Thyroid"
What kind of thyroid cancer were you diagnosed with?
In December of 2009, I was diagnosed with papillary thyroid carcinoma.Not even a year has passed since my diagnosis.
What does Thyroid Cancer Awareness mean to me in terms of importance, and spreading awareness?
As for all cancers, Be Aware and Beware…it could be you.Thyroid cancer, in particular, can lurk in one’s body rather silently for many years, yet as Dori’s endocrinologist once remarked “You can die from it”.And that’s the harsh truth.I spread awareness by being open and forthcoming about my cancer.And I love the way people subtly touch their necks, silently examining themselves for lumps, when I tell my story.(Be honest…Are you feeling your neck right now?).It would be difficult for a layperson to detect thyroid enlargement much less feel a nodule. It should be checked during a regular physical examination.A very simple thing for your doctor to do…and if he forgets, please request it.
How do I feel when people say "If you have to get cancer, thyroid cancer is the one to get"?
Well okay, if you say so—perhaps it is in some respects. Of course that depends on the type of thyroid cancer you are diagnosed with. I am grateful for the fact that I have the most curable of the thyroid cancers. I am grateful for the fact I haven’t lost a breast, or a kidney, nor do I have a disfiguring scar.Just a few-inch incision in my neck, and voila, thyroid is gone and hardly missed, and hormone replacement is started. I am also thankful that in exchange for chemotherapy, I had to undergo radioactive iodine treatment. On the other hand, cancer is cancer. There are no guarantees. I will still need to be monitored and recurrence, surgery, and further treatment is always a possibility. How's that for a good cancer?
What other myth would I like to dispel regarding thyroid cancer?
This is an easy one for me. When Dori was diagnosed four years ago, we were told how rare thyroid cancer is, not just because Dori was only 17, but rare in general. Then, just three short years later, I was diagnosed with thyroid cancer after which my oldest daughter Janina was diagnosed, after which my sister was diagnosed, after which my niece was diagnosed. It was difficult to believe that thyroid cancer was so rare after all. Scientists believe that there is a genetic link with regard to papillary thyroid carcinoma. Our family is currently participating in a study along with 100 other families (all with multiple family members having thyroid cancer) with the hope that this gene will be found.
What one thing would I tell the world about thyroid cancer?
It's easy to diagnose. It's easy to treat. With regard to your health in general, be diligent about getting regular checkups and screenings. That's your best defense.
What advice would I give to a newly diagnosed thyroid cancer patient?
At the end of the day, it's not so bad. No one could have been more terrified than I was, of all of it...the biopsies, surgery, treatment, scans -- ALL of it! For me to say it's not that bad is a huge deal. Really, it's not so bad. Surround yourself with the things and the people that you love. Find humor in whatever you can. Laugh out loud and be silly (loved ones are never more forgiving as when you have cancer). Know that YOU ARE NOT ALONE, even when it feels that way sometimes...or a lot of the time. So many people are rooting for you, many of whom you have never even met. Reach out to others and give them the pleasure of knowing that they've helped you. Stay busy living; and instead of dreading the day of surgery, treatment, whatever, look forward to it, because the sooner it happens, the sooner it's over. Before you know it, it will be behind you...and you will see that it's not so bad.
Funny Story Time...
I always tell my grandson, Marrin, that I have been with him since the day he was born. Since my daughter lived across the street from me, I saw Marrin every day. Always together, he's my buddy and the joy of my life. He accidentally calls me Mom sometimes, and it makes my heart smile. Marrin was 6 years old when I had my surgery. Just one month later, Janina (my daughter and Marrin's mother) had her thyroid surgery. When Janina removed her bandages, I stood next to her in the mirror to compare scars. Marrin ran to the sofa, buried his head, stomped his feet, and started to cry. Janina rushed to console him, assuming that he was upset because he felt sorry for us, thinking that our scars hurt. Through his tears he said in a rather demanding and pouting way, "But I want the same mark on my neck that you and Grammy have".
Below are the questions presented to and my responses. I'm so excited to be doing this for these wonderful ladies. I love them all. Please go check out their website. It's thylicious, thylightful, and thylovely!
What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor? I was diagnosed with Papillary Thyroid Cancer (PTC) in 2006. I've been a survivor for over four years. Woo!
September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness? Wow. Loaded question. September being Thyroid Cancer Awareness Month means that I have an excuse to spam the world. It means I have the ability to say, "HEY, Listen up, people! This month is Thyroid Cancer Awareness Month, so you better keep in mind what I have to say!" As I've stated before, thyroid cancer is no joke, and it doesn't discriminate. It means that us TC survivors can finally have our voices heard, since the month is completely dedicated to our cancer. Sure, we may not be at the level of "awareness" that breast cancer has gotten to, but we sure as heck can raise enough voices to get there, as long as we all stick together. Awareness is extremely important. Since I've answered a similar question like this before in my PFAM post, I'll make this more brief. Awareness makes all the difference. I used this example in my previous post, but it still has the same effect. I was diagnosed first with Hashimoto's Thyroiditis. To be honest, I still stumble over the words, and I never even understood what in the blazes they were! I had no idea what the thyroid was, let alone what its -itis meant, and who in the world is Hashimoto? Is that a town? I mean, to be completely frank, I never had an anatomy class besides, well, sex education in like 5th, 6th, and 11th grade. I mean, really. People need to be much more aware of what goes on inside their bodies! Half of the people in the world don't know about these organs, especially the thyroid. That's where this awareness comes in. If we don't know about an organ, then how in the world will we be able to tell if something's wrong with it? I spread awareness simply by being a Nagging Nelly. I pester my friends, family, co-workers, acquaintances, etc. I post information on Facebook and Twitter. I talk about my story so much my head starts to hurt. I can spew it out probably in less than one minute, since I'm so practiced. I talk about my family. I make sure people know what is happening, and I put my business out there so people can see that this is REAL. I never thought, beyond my wildest dreams, that any of this would ever happen to us. And, it has. So I'm going to do everything I can to stop it from happening to another family. The question is, will you help me?
Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.” What do you think of that statement? When you’re told this, how do you respond? Oh, how I despise this comment. I've been told that goodness knows how many times in the last four years. Sure, thyroid cancer has a high 5-year survival rate, depending on the cancer, but honestly, if it isn't 100%, then why is it "the one to get?" PTC has a 93% 10-year survival rate, FTC (follicular thyroid cancer) has an 85% 10-year survival rate, MTC (medullary thyroid cancer) has 75% 10-year survival rate, and Anaplastic/variant TCs have a 14% 10-year survival rate. Do you want this cancer now? I think not. PTC has a good 10-year survival rate, but would you want to wonder if you'll end up being the 93% that survive ten years, or the 7% that don't? Go tell that to your doctors. When I was told that before, I accepted it, and it comforted me. But then again, I was young and vulnerable, and would take any good news I could find. I scraped at the bit for any sign of something positive, because I felt anything but. Now that I've lived through this and reflected back on it, I loathe that statement. It's a fallacy! Cancer is cancer, no matter which way you roll the dice. The option I would have picked, if I had the choice, would have been, "None of the above."
Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good cancer or the easy cancer. What other myth would you like to dispel regarding thyroid cancer? The big myth I keep encountering is that it's easy to treat. Yeeeah, OK. After two extensive surgeries and two big treatments of radioactive iodine (RAI), my cancer is still not gone. It's dormant. It's biding its time. Who knows what it'll do. But, it's still there. Try telling me it's good and easy when I'm still battling it every day of my life. I've never been on a yearly basis with my doctors (which means I'm pretty much in pristine condition). I'm still on a six-month track, which means I'm still under the ever-watchful eye of my lovely and fabulous doctors. They know something's there, it's just a matter of annihilating it. Four years later, and I'm still dealing with this on a regular basis. Put that in your "good cancer" book.
What one thing would you tell the world about thyroid cancer? I say this as often as I breathe: Thyroid Cancer is no joke.There's nothing good or easy about it. "You have cancer" still makes you want to pinch yourself, make sure it's not a nightmare. Thyroid cancer is just like any other cancer in the sense that it attacks the body, alters the mind and completely changes the way a person feels and acts in their everyday life. I don't know who I'd be if I didn't have thyroid cancer, but I sure as Dickens know I wouldn't be this Dori. I do not, however, regret who I am today. I embrace who I am now, and I use thyroid cancer as a tool to keep myself grounded, focused, determined, and just plain stubborn.
What advice would you give to a newly diagnosed thyroid cancer patient? Talk about it. Give yourself the opportunities to share your story. It's not a blessing, but it isn't a curse either. Let others in. Let them help you through it. You can't go through it alone. You need at least one other person to help you. Find someone you trust and make sure they are ready to take this on with you. Smile. Every day. Laugh and joke with others. Let yourself be happy. It's OK to be upset, but it isn't OK to keep sulking and moping. Go out with family and friends, go wild if you want to! Don't ever lose those qualities and memories pre-cancer that made you happy. Hold onto them. Find a community like Dear Thyroid or I'm Too Young For This! Cancer Foundation. Find others just like you to help you, give you tips, and direct you to resources that can make your journey a lot less hectic. Make sure you know that you are NOT alone.
Do you have a funny thyroid cancer-related story you are willing to share?
Wow, what a turn of events, here! Well, I actually do have something very funny that I still kind of get a little misty-eyed over. It isn't a sad story, but it's funny and still makes me feel so loved. It also, however, makes me realize just how strange my father is.
When I was going through my first radioactive iodine treatment, I had no idea what I was in for. We got to the hospital, and I had my change of junk clothes, book, SuDoku book, and DVDs if I felt like watching anything. All of this had to be thrown out after treatment, of course, so I was hardly attached to any of it. The first night was hard, because I barely had any human contact except for the nurse who would come in to bring me meals, ask me how I was doing, then check her exposure levels before exiting the room. I felt like an alien, and more alone than I had ever felt in my life. Everything was wrapped in saran wrap, and the handles to the shower, toilet, sink, and bathroom door had gloves on them. I had to flush the toilet three times, and pour some anti-radiation liquid into the bowl so that it would flush out the radioactivity.
The next day, the lady from nuclear medicine came with her big Geiger meter to measure my radioactivity levels. She said that if I measured at 5 millicuries or less, I could go home. The first time she measured me, she measured me at 5, or a little below. I was elated; I didn't have to stay in the hospital for another night! It made me so happy. I was so thrilled, that I immediately got on the phone with my mom and told her the news. As I'm talking, the lady says she wants to measure me again, just to be sure. So, when she measures me, she said, "Oh, oops, I'm sorry. You can't go home today. Your levels aren't as low as I thought." I will tell you right now, people, I never wanted to injure someone as much as I wanted to injure this lady. I cried into the phone, telling Mom that I couldn't come home, and I just had the biggest meltdown of my life. Mom said, "We're coming down there.Calm down, sweetie, it'll be fine. I love you." I was still crying when my parents came over. They waved to me from the street below my window. I waved back, still a complete mess. They came upstairs and brought me some digusting orange icy thing from the cafeteria. They talked to me for a few moments, but as they're about to leave, my dad turns back to my mom and says, "Hang on, Neen." He gives me this piercing stare, with this absolutely serious look on his face, and turns the light off. He stares at me for a good few seconds, then turns them back on. With this faux-outrageous look, he turns to my mother and says, "Damn it, Neen, she doesn't glow!"
I never laughed, nor cried, so hard in my entire life.
As always, my sweeties, I wish you all love, happiness, and -- most importantly -- good health.
In keeping up with the more ancient memories and early memories of my thyroid cancer journey, I do want to address one thing that people tend to ask me when I initially tell people about my diagnosis: How did you deal with it? You're just...so young!
Well, yes, I am young. I was young at diagnosis. 17 isn't exactly an old age to get cancer. In fact, in my mind, I was probably younger than 17. I did, however, have to grow up pretty quickly, so it was a little stressful in that respect.
How I dealt with it was another story. When I received the news, I did cry. A lot. I cried quite a bit after the fact, when I was alone in my room. I was petrified of everything that was awaiting me, whatever that could have been. When I left the doctor's office, though, I had stopped crying and made all the phone calls I needed/wanted to make. I called my then-boyfriend, family, friends, church, etc. Everyone I trusted. I didn't, however, contact many people from school. I maybe told my closest friends, which consisted of maybe three or four people. My diagnosis was three days before graduation, so I kept it quiet. I didn't Facebook it until later on in the year, and even then, people were commenting saying, U HAVE CANCER?! OMG DORI R U OK!? Yeah. So, I didn't really spread it to the world until later.
If you're asking why, well, I'll tell you. Graduation was a big day, not just for me, but for everyone else in my class. I didn't want to ruin the day, nor did I want any pity hugs and false smiles. I just wanted to feel normal for a day without any drama. I didn't really even talk much about it at my graduation party. I only discussed it with people who asked me questions. These were big days for me, and I didn't want to feel like some alien, which is exactly what I felt like. Being with my friends and family and celebrating my success was normal to me, and I wanted as much normal as I could get until my surgery.
A lot of people were shocked I didn't tell them, like friends and acquaintances. But, really, understand this: cancer patients may not really want their business out there right away. It may take some time for them to grasp it and accept it. Sometimes people never do. Even now, I sometimes wonder if it really did happen to me, if I really did go through all of this. It's a lot to take in, and it changes your life forever. If I didn't get cancer, I'm pretty sure I wouldn't be the person I am today. I don't really even want to think of who I would be; it's not worth it. I wouldn't have been me, and that's what matters.
Telling the people I told right away helped me accept it a lot quicker. It gave me more of a reality check, and it kept me grounded. I wasn't in the clouds, thinking and wishing I was somewhere else or someone else. I kept myself in check, and told myself everything would be fine, even though it was so difficult to even think that at the time. "Fine" was simply my way of evading any "How are yous" and "How is everything goings." Each day, I just did my best to go about life as normal, and kept myself very busy. As things started happening, I just kept going. Sulking and sobbing was never an option for me; I never let it become one. Why bother? It does no good.
When I was student teaching my 6th graders, I came across a part in the novel Hatchet that really struck me. Brian (the main character), is crying "self-pity tears, wasted tears." What is the point in feeling sorry for myself when it would have done nothing for me?
As always, I wish you all love, happiness, and -- most importantly -- good health.
Woohoo, entry #40! :-) It'll be a real feat when I hit #50! I'll hardcore celebrate then. Which should (hopefully) be in about 10 days.
I apologize for not blogging as often as I promised. I spent the weekend helping one of my cousins and her family pack and get ready to move. This is my cousin that came out clear of thyroid cancer. She had three nodules, but all of them were very small and the doctor was not concerned. So, she is being followed on a yearly basis.
Now, onto the fun stuff.
The 'Stupid Cancer' Show, an online radio show hosted by the 'I'm Too Young For This!' Cancer Foundation, came back on the air tonight after their month hiatus/vacation. The show's theme tonight was StandUp2Cancer, in celebration of their second annual TV concert broadcast this Friday, September 10th at 8pm EST/7pm CT on ABC, NBC, CBS and FOX (You should check your local listings and watch it). Laura Ziskin, Co-Founder of SU2C, was on the show tonight, along with Ethan Zohn, Survivor: Africa winner, and Leonard Sender, M.D., Clinical Professor of Medicine and Director of Clinical Oncology Services. Several topics were discussed, but one thing that hit me in particular was something Laura said. Below is her quote:
"My daughter is 27...we were actually having a conversation with one of her friends, a young man, who said, 'I'm so blown away by the statistics...I have a brother, and I think one of us is going to get cancer, statistically, and I'm just so blown away by that...'"
Right when that was spoken, shivers went through my spine. Watch the SU2C PSA located here, and you'll see why. It's frightening, really. 1 in 2 men? 1 in 3 women? Oy, vey! But, if you look at those odds, and you look at my family, well...we don't exactly follow the rules, do we? If you look at my direct line, it's my mother, my sister, and me. All three of us have had cancer. My sister, however, has had three different cancers. Three. If you look at my aunt's line, it's my aunt Rea, then her daughters Diana, Jeanne, and Melissa. Melissa was the 1 in 3. But, who knows what could happen. Since it runs in our family, our odds spike.
That really leaves that statistic out in the dust. The odds for our loved ones in my family are 50%. It frightens me beyond comprehension that in my younger cousins' lifetimes, they could all get this disease. Our doctors have recommended them all to be given ultrasounds regularly as soon as they hit puberty. Evan and Adrianna, the oldest of the cousins after me and my brother, have hit puberty. Soon enough, they will be getting their ultrasounds. And, then and only then, will time begin to tell.
This is why I do this. This is what I think about every single day of my life. Cancer has changed me, changed my entire outlook on my life and every other life directly affected by my own. Sure, this isn't my fault, but I did begin this cycle, and I want it to stop. I don't post because I want to spread my feelings and make people feel sorry for me and my family. I post because I want you (yes, you, dear) to be aware of your body and aware of what's around you. Cancer is no joke, and it certainly does not discriminate.
As always, I wish you love, happiness, and -- most importantly -- good health.
During this month, every so often, I'll blog about some unforgettable days during my thyroid cancer journey. Today's blog will be one of them. Since I was so busy yesterday, I'll blog again tonight.
I don't think I ever blogged about how I was diagnosed. Not a lot of people know the entire story, so I'll attempt to make this brief yet detailed.
May 2006. I'm finishing my finals and about to leave high school forever. While taking my AP Psychology final, I felt pain and swelling at the base of my neck. It was so uncomfortable taking the test. The odd thing was, I felt fine otherwise. I talked to my mom that night, and she thought it was just a swollen lymph node or something. She didn't seem concerned, so I felt okay about it. My sister took me to my pediatrician, and he knew what the problem was right away. "Oh, she has Hashimoto's Thyroiditis." I said, "I have what?" I was so confused; I didn't even know what that meant, let alone how to spell either word. He explained what it was to me, and reassured me that all I would need was antibiotics to help the swelling and the pain. As he was writing the prescription, my sister suddenly asked him if he would write a script for me to get a neck ultrasound, just to check my thyroid out. He nodded and wrote the script for us.
Skip to that weekend. I had the ultrasound done, and the technician was a sweet woman. She reassured me that everything would be fine, and I really wasn't worried. So, I laid down and she began the ultrasound. When she stopped at the left side of my neck, I didn't think much of it. However, when she talked to my family and told us she found something, I was a little nervous, but really didn't know what it could possibly be.
The following week, I was taken to a surgeon at a local hospital. He told me that he would do a fine needle biopsy on the singular nodule in my thyroid. He really was a nice man; he reassured me that it was probably nothing, and not to worry. He only needed to do one biopsy, thank goodness. The next step was the fun part: waiting.
That week felt so long yet so short all at the same time. It was excruciating. The day of my result was the absolute worst. My sister took me to work with her to help take my mind off of it. She gave me work to do and just kept me busy. At one point she and I had a small talk about it as the clock crept closer to my appointment. She said, "Dori, whatever the results are, we will deal with them. Everything will turn out fine. Don't worry." To be honest, it was really hard to listen to her with my stomach doing all sorts of flips and flops. I really didn't know what was in store for me, good results or not.
Truthfully, I don't remember the drive back home, but I am pretty sure Janina and I were just having some small talk and now and then we would discuss how I was feeling and all that jazz. When we were in the elevator, Janina asked me, "Do you want to know the three signs that tell you a doctor has bad news?" I shrugged and said, "Sure." She told me that the doctor would a) avoid looking you in the eye, b) have a solemn look on his face, and c) the first word out of his mouth will be, "Well..." I shrugged and said, "OK," and wished to God that he wouldn't do any of those things.
I sat with my mom, dad, sister, brother, and nephews in the waiting room. I was so relieved that my two nephews and brother couldn't come in; I didn't want them to see me when I got the news. We piled into the patient room and I just kept busying myself with my SuDoku book, as usual. I used it as a crutch and as a shield the entire day. Weakness was an emotion I did not openly reveal.
My heart skipped five beats when a knock sounded at the door. The doctor walked in, spotted me, and immediately looked away from me at every other person in the room. Strike one. I then noticed that he had no lines on his face; it just looked so solemn and serious. Strike two. Tears started to trickle down my cheeks as my dad, jokingly, said, "So, what's the word, Doc?" He looked at my dad with a small smile and said, "Well..." Right then, I lost it. I looked down at my SuDoku book, and just let the tears fall.
As always, my friends, I wish you all love, happiness, and -- most importantly -- good health.
To follow the theme I started, I posted a statistic on Facebook that I happened to find as I was doing my research this morning:
Thyroid Cancer Awareness Month Fact #2.1: From 2003-2007, approximately 1.8% of thyroid cancer patients were diagnosed under the age of 20. Wow. Go ahead and ask me: How does it feel to be part of that 1.8%?
Shocked? Me, too. And, to top it off, I'm definitely part of that 1.8%, considering I was diagnosed in 2006. I was astounded when I found this statistic. I had never really seen a percentage or number that ever told me exactly how uncommon if not rare it is to find thyroid cancer under 20 years of age.
Here's something that may surprise you. As I was contemplating that 1.8%, I couldn't help but wonder: Who out of the other 98.2% were not diagnosed under the age of 20 when they could have been? And, if they could have been diagnosed before 20, why weren't they?
If you really break down the events leading up to my diagnosis, I technically would not have been part of that 1.8%. I had been diagnosed with Hashimoto's Thyroiditis when I started getting some swelling and pain at the base of my neck. My sister was the one to ask my pediatrician for a neck ultrasound, just so see how my thyroid looks. Turns out, there was a nodule there that looked suspicious, since it was a singular nodule and it measured over 1cm. It was biopsied that week, and one week later, on June 1, 2006...well, you know.
The point I'm trying to make here, ladies and gents, is that we all need to be aware of our bodies and know what to look for. We need to know our family history -- as far back as it goes -- because there could be some problems we never knew about. A prime example is my family. But, if you're veteran TMOOP readers, you know that story, too.
As always, I wish you all love, happiness, and -- most importantly -- good health.
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.