Too Much on Our Plait: 2015

Like Daughter - 52

Today's post comes after a lot of thinking. I haven't gotten my blood work results back, but I have a completely different issue to talk about.

All my life, I have struggled with my weight. I think it started when I was about 10. I was always overweight from that point on, and it was hard for me. It was the typical story - I saw other girls I wanted to look like, and tried so hard to look like them. I had a very different body type, and that was another setback. I have done countless programs - Weight Watchers, Jenny Craig, my own diet plans - and yet I always ended up gaining it back if I strayed. They worked, don't get me wrong. It was just very hard to maintain.

From about late 2010 to mid-2011, I was following my own plan. I was monitoring my calories, eating well, exercising almost daily, and making sure I was constantly moving. My job at the time was not as demanding as the one I have now, but I worked hard despite feeling tired after a long day. I felt so much better about myself. I lost about 20-25 pounds in that time, and I met my husband when I was at my smallest. Since then so much has happened - a new career, moving in with Jason, lifestyle changes - and now I am at my biggest. I'm over 200 pounds, which was unheard of for me before now. I lost weight before the wedding, but afterward, it came back on and then some. Due to certain medicine, lack of time and activity, and lack of energy, my body has become what it is now. I've been noticing more and more how much strain my body is under. I am short, so there is a lot of weight to carry for my stature.

I always blamed this on the cancer. I blamed my thyroid and constantly fluctuating levels. I blamed the medicine I took for almost a year that made me so lethargic I didn't care what I ate, therefore making me gain so much weight. I blamed myself.

As my mom says, I have the tools. This is true. I've always had the knowledge. It has been accumulating for over a decade of dieting, weight loss plans, and personal experience.

Three days ago, I had an awakening. I have had this before, but this is different. I had started to accept my body this way, but I think about my health and how much my body hurts just from climbing a hill. I can't live like this. So, I made a decision:

I won't.

This is the turning point. Over the last three days, I have watched my calories using MyFitnessPal, and I am starting to go back to Jazzercise with my mom. I already have lost about three pounds. I'm feeling better already. It's really hard working out with my body this way, but I won't let it stop me.

~~Hopefully,~~ by the time CancerCon 2016 comes around, a new, smaller, healthier me will have blossomed.

Next time I blog, it will be about the blood work results. I promise.

Until then, friends, I wish you love, happiness and - most importantly - good health.

Dori

Read More 0 comments | Posted by Adelina and Dori |

Like Daughter - 51

Good evening, my friends.

I figured it was about time I posted about my current situation with my cancer follow-ups. I have been seeing my endocrinologist every 6 months since my second surgery, which was November 2007. Up until about four years ago, my thyroid levels have shown little to no cancer evident. Four years ago, my numbers began to creep up. I went from below 0.5 to 1.9, to ~3, to 4.3, to 4.5. I just had blood work done yesterday, so I don't know my levels just yet. I'll update again with those along with the next steps that my endocrinologist wants to take.

My endocrinologist is amazing. Dr. H is straightforward and very proactive with my treatment. She has helped me become more independent and to take control of my treatment. She welcomes questions and answers them. I really appreciate her and all she has done for me throughout my cancer journey.

She told me she's ambivalent about biopsying and "cherry-picking," as she calls it. What she calls "cherry-picking" is going through my neck to biopsy and (eventually) surgically remove any lymph nodes that show any level of cancer, no matter how small. My numbers are not high enough just yet. The "magic number" is a thyroglobulin of 10. Dr. H told me she feels comfortable "sitting" on me and waiting. This has been her decision the last three years, so I'm not completely shocked. This time around, though, she is unsure if she wants to do a stimulated thyroglobulin test. A stimulated thyroglobulin means that the patient receives shots of thyrogen (right above the butt - Yay!) and at the end of the week, gets more blood work done to compare to the initial unstimulated thyroglobulin. If the numbers are higher, it means there is thyroid cancer still in the body. This test is much more sensitive in finding any leftover or recurrent cancer cells. When my numbers come back from this test and if they are higher than before, then she will do a stimulated thyroglobulin test.

I jokingly call it "cancer limbo." It kind of is, really. You're just sitting around waiting for something to happen. If it doesn't happen, you're happy (of course). The problem is the foreboding feeling. It's always there, in the back of your mind.

"Will today be it?"
"Where is it, and where is it going?"
"Why can't they just find it and get it out?"
"What's taking this so long?"
I just want it over.

These are just a few questions and thoughts that run through my head. I know other cancer patients and survivors can relate. The feeling that this appointment, this scan, this ultrasound, this blood test -- could be what shakes our current "normalcy" and turns it upside down once more. This has been my thought process since my last (second) surgery in 2007. I had 22 lymph nodes removed from the left side of my neck, two of which were malignant metastatic papillary thyroid cancer.

I've always told people that I'm just waiting for the ball to drop. The response I get more often than not is, "Don't jinx it! You're asking for it to happen."

Am I, though? Am I being dark and depressing, or am I being realistic? What's wrong with waiting for something to happen? Of course I'll be happy if my numbers never increase to the "magic number." The last time I felt like this was over was when my endocrinologist gave me the thumbs up after my nuclear scan post-radioactive iodine treatment. She said I was cancer-free and in the clear. All that needed to happen was get low numbers in my blood work. Guess what? They were not low enough.

Call me crazy, but I do not feel it is wrong to be ready for either event. If the ball drops, fine. I'll get through it just like the last two times. If it doesn't, fine. I will continue to live my life as best I can, just as I have in the 9 years since my diagnosis.

Feel free to leave comments with your opinions. Do you agree? Disagree? Do you experience the same roller coaster ride? Let me know!

As always, friends, I wish you love, happiness and -- most importantly -- good health.

Dori

Read More 4 comments | Posted by Adelina and Dori |

Like Daughter - 50

I can't believe this will be our 50th blog post! This is really exciting. What a great way to begin this entry.

Today's post is about quality of life for survivors and those who are affected by cancer in any way -- family, friends, caregivers. It is extremely important to be healthy, happy, and surrounded by those who love you and care for you. It is also important to be surrounded by those who understand what it is that you are going through.

When I was at the beginning of my cancer journey, I felt like I was the only one. I knew no one else who had thyroid cancer. It was 2006, and I had no one to turn to but friends and family who could sympathize, but not empathize. This is a big deal for anyone with an illness, especially a chronic or long-term illness. It can be very hard to cope when people listen to you, but can really only give words of encouragement or affection (which is also crucial).

My sister, however, had gone through cancer about a decade or so prior to my diagnosis, and she helped me through a lot of what I went through. Without her, I would have gone insane. I love her to pieces, and I wouldn't be who I am without her.

I'm a talker, in case you didn't realize. I talk about everything and anything, and have always been extremely open about my cancer journey. I need to be. I can't keep things bottled up. I wear my heart and emotions on my sleeve. Anyone who knows me (or doesn't know me well, really) can vouch for this. I also am very passionate about making sure my voice is heard for the sake of others who may need to hear what I have to say. When I was first diagnosed, I called everyone who wanted to know my results. I must have called about 10 people. The more I said it, the more real it became. I thought it a ~~dream~~ nightmare when it happened, but the more talking I did, the more...hardened I became. Not hardened as in cold and distant, but more strong and grounded. But out of all of those phone calls I made, not one of them were to a fellow survivor. No one who really grasped what I had just heard. No one who truly understood. It was a very lonely time, despite having so many people around to support me.

If you are reading this and are not a survivor, please do not misunderstand me. I needed my family, my friends, and those around me who were there for me. I needed that comfort and that support. If I didn't have them, I do not know where I would be. However, part of me still felt alone and completely isolated. I needed someone who was going through cancer, someone who at least had some understanding of what I felt and could take the journey with me.

There are so many people out there right now who feel as I did back in 2006. However, there are now endless resources and support networks out there that can help those going through cancer not feel so alone. Stupid Cancer, Imerman Angels, Friend for Life Cancer Support, Hope for Young Adults with Cancer, to name a few. Go to this page on Stupid Cancer's website for countless more resources and websites.

In addition to these amazing resources, there is something new that will change the world of cancer for all. Survivors, caregivers, family, friends, let me introduce you to Instapeer. Instapeer - developed by the fabulous people at Stupid Cancer - is an app that will connect you to others who are like you. It is available on iPhone and Google Play. It is extremely specific, and will match you with others according to age, diagnosis, location, cancer stage, etc. The possibilities and options are endless. Even if you use it periodically, know that it is a place where you can go that will help you not feel so alone. You can message people privately, participate in the chat room, and create friendships and connections that will guide you and support you throughout your journey. Just know that this is there for you, and those using the app are there for you, as well. Including me.

As always, friends, I wish you love, happiness, and -- most importantly -- good health.

Dori

Read More 0 comments | Posted by Adelina and Dori |

Like Daughter - 49

Hi!

It's hard to believe it has been almost four years since my last post. A lot of things have changed. The blog may have halted, but life just kept on rolling!

Since the last post, I have gotten married and been very busy with my career. I took a hiatus from the cancer world (not completely, but I became inactive) for what seemed like a decade. Last month, my husband, Jason, and I attended CancerCon in Denver. The conference is hosted by Stupid Cancer, and is what the organization has been building up to since its inception in 2007. The OMG! Cancer Summit was the "main" conference in New York, and that is actually where I attended my first OMG! Summit in 2010. At the 2011 conference, I met my husband, a brain cancer survivor, and we began dating soon after. We got married last April, and are very happy (one would hope, right?).

The hiatus Jason and I took from Stupid Cancer was extremely hard, especially for me. I always felt like myself with the people from this organization, and they became family. There was always this hole in my heart, and every time I tried to get myself involved again, something happened to pull me away. Finally, this year, Jason and I said we would go to CancerCon, no matter what. So, we did.

It has taken me some time to put my thoughts together and write about the experience. Something like this is very difficult to put into words verbally, and even harder to "write" down. I am going to do my best, and hope I do the conference the justice it deserves, and then some.

The conference took place in Denver, Colorado, during the days of April 24-26. Jason and I flew in a day early to get ourselves settled and help out if needed. We saw many old friends and gained new ones. I met a fellow thyroid cancer survivor, and I was ecstatic to have a new friend who understood my diagnosis on a personal level. She and I really bonded. She brought her husband with her, and he and Jason really hit it off. It was nice to see Jason talking with another married man who understood his position. We had a blast reconnecting and making new memories while rekindling the past.

The conference officially began during the opening ceremonies on Friday, the 24th. The room was breathtaking -- the lights, the stage, everything was unbelievable. It was so hard to fathom that over 600 attendees -- survivors, caregivers, doctors -- would be in this same room! At the 2010 conference, there were over 150 attendees. In just five years, that number has more than tripled. Just the idea that Stupid Cancer has made this much of an impact and has reached so many people brought tears to my eyes. I hugged my friends on the Steering Committee and congratulated them, feeling so blessed and honored to be there and share that moment with them.

After Matthew Zachary (CEO of Stupid Cancer) and Alli Ward (VP of Stupid Cancer) welcomed us and kicked off the conference, I made sure to find Matthew to hug and congratulate him. I was still trying not to cry, and seeing him just made it harder to do so. I could hardly tell him my feelings, and I am pretty sure he understood. It brings me to tears even now to think of how that room looked that night.

There was a scavenger hunt scheduled for that evening, and Jason and I teamed up with Kristina and Allan (married couple; Allan is a survivor of lymphoma), Lauren (survivor of kidney cancer), and Nicole (Assistant Director of Friend for Life Cancer Support Network). We named ourselves "Team Badass" and tore through the city, racing to get all of the items done on our list. We posed with mimes, took selfies in a bathtub (don't ask), took pictures with a cop (no arrests, we swear), and came up with the most creative ways to check off the items on our list. 11PM was when the scavenger hunt was over and all pictures were to be sent to the judges to be evaluated. We were lying on the ground, tired and sore, but we somehow mustered the energy to go get some food and drinks. It was so much fun being with these new friends and working together to beat the other teams. Unfortunately, we didn't win, but we formed a special bond that one can only have as a member of Team Badass.

The next day was chock full of breakout sessions and meeting the exhibitors. I attended two of the breakout sessions, but the one that stood out the most was What Cancer Stole From Me: Grieving the Losses Associated With Cancer. During this session, the speakers had us write on two sides of an index card. The front was about what cancer has taken from you. The back was for something that people don't understand that affects our cancer journey. On the front, I wrote about my grandfather (d. 2005 of non-Hodgkins lymphoma), and my family suffering from familial papillary thyroid cancer (there's more about this in previous blog entries, if you are new to this blog). This was not the difficult part. The difficult part was the back. I wrote about how I am about to "celebrate" my 9th cancerversary, and yet the stigma that "thyroid cancer is the good cancer" still exists. It hurts to feel like my journey is easier than others, when really everyone's journey with cancer is different and cannot be compared. Of course, I didn't write ALL of that, but it pretty much stated that. After we wrote on our cards, one of the speakers read our cards out loud. When my card was read, I started to cry. I didn't understand why, at first. I've thought about this so many times, repeated it out loud to so many people. Why did it get to me so deeply? Why was this even still something that COULD reach my heart in such a way?

That evening was Stupid Cancer Pub Trivia. Team Badass plus my new thysister and her husband joined us. We did pretty well, and it was so much fun! Italia Ricci (lovely lead actress in "Chasing Life" on ABC Family, and awesome Stupid Cancer advocate) joined the fun and was watching at a table behind us. She came in so quietly I didn't even realize she was there! She looked like she was enjoying herself, and was such a sweetheart when people talked to her. The night was full of laughs, love, and badassery. ;-)

The next day was the last day of CancerCon, with breakout sessions in the morning and the last few speeches before the end of the conference. I attended two sessions: When Did Cancer Turn Me Into A Control Freak? and Your Next Chapter - Making Your Survivorship COUNT! The first one was pretty powerful because I was in a room full of people who felt like they had no control over their lives, and that cancer and its side effects were taking the pieces of control that we thought we had left. We talked about our feelings and about how we can take back control and rely on those who understand and give us comfort. We all were given a little fabric bag and little cut out pieces of index cards. We were told to write down things/people/places that make us happy and bring us peace. We were also told to write down various things that stress us out or make us lose our sense of control. At the end, we put our "happy cards" into our bag, and the "stress cards" into a bin to later be burned. It sounds crazy, but I felt like a weight was lifted from me. I knew I had let go, and I had a better grasp on what was important to me. It felt nice to throw those little cards made of nightmares into that bin. Good riddance.

During the second session, I got to watch two lovely and beautiful ladies, Tamika Felder and Helaine Bader speak to us about telling our story. I spoke up at one point to respond to them about a question, and I talked about what I wrote on that card the day before. Again, my throat closed and cried. I had a harder time saying it than I did writing it. I kept contemplating afterward why this kept catching me. It dawned on me later on, and that epiphany was hard to swallow:

I had cancer.

You're probably thinking, "Well, DUH..." But, honestly, that never did sink in before. Not as much as it did during the conference. People in the cancer world used to get so frustrated with me when I told them that my cancer was "no big deal," and that I "didn't go through as much as they did." I used to shrug it off, and say how I felt bad that I didn't suffer as much. I was told over and over again, "Dori. Cancer is cancer. There is nothing 'good' or 'easy' about it, no matter which type you have." That finally got through. After 9 years of that stigma of "good cancer" being thrown in my face, it finally hit me. I have had two surgeries, two RAI treatments, countless biopsies, scans, and blood work tests. This cancer is still not gone. It is still in my body. In fact, my blood work numbers are going up every 6 months. It's only a matter of time, really, before they need to go cherry picking in my neck once more.

I want to end these false ideas about thyroid cancer. I want to bring my knowledge, my story, and my family to as many people as possible. I want to inform and move people into being more aware of this disease and what it can do. I want to get to know and help those who already fight this every single day and feel so alone because they feel like no one understands. I want to be a person who really makes waves in the thyroid cancer world and in the outside world.

So, to close this long, long entry, I will say this: I will be more involved in the young adult cancer community, and I am going to do everything in my power to accomplish the goals I have set upon myself. You will see me again, and this blog will continue.

Until then, friends, I wish you love, happiness, and -- most importantly -- good health.

Read More 2 comments | Posted by Adelina and Dori |

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.