Trust Your Gut

Oh it’s me again – I know, I know, something must have happened because she’s posting again lol. Although that might be true, I do intend to post more often. As we all know, the journey is never over, but the chapters change with each tide.

So I can honestly say that last year had been a good one. As you might remember I was given the “no evidence of disease” 2 years ago yesterday but we had to wait an additional 6 months to start trying for another baby. Then 6 month and 2 days later, our Baby Bear was finally more than a thought, if you know what I mean?!

During my pregnancy, my thyroid medication had to be changed a total of 6 times so I was on a constant roller coaster (more than just the change in pregnancy hormones – add in the fluctuation of thyroid hormones too)!!! I was grateful for both my doctors to be in constant communication and having monthly blood work checks to make sure I was where I needed to be. After Spence came into the world last July, I was actually quite surprised by how quickly I fell back to my “normal”. I felt great and started to lose the pregnancy weight very quickly – thanks to breastfeeding the first couple months. Unfortunately, after several attempts and trying what felt like everything, I was unable to continue to produce enough breast milk for Spence. I was thankful for my Endo to confirm that many of us without Thyroids are unable to produce the required amount – made me feel better knowing it wasn’t just “me”. I thought I would take it better with baby #3 but #momguilt always sinks in. Even if I knew that as long as he was fed, that’s all that mattered.

Fast forward to this past December, Spence was just 5 months old and I noticed I was still not feeling my best. Part of it was the stress of the holidays, I’m sure, but I knew it was more. I sent my Endocrinologist an email asking about my numbers. He assured me that they were fine and that I needed to give my hormones more time before we try to change anything. I was definitely frustrated by his response and should have insisted on blood work but the anxiety kicked in telling me I was overreacting. January came and I had my annual whole body scans – thankfully everything came back where they should and I could go back to my normal and focus on my always busy family life.

Within a month, I started feeling as though something still wasn’t right. My anxiety and depression was at an all time high again. I was tired All. The. Time! Yes I know I have a busy home with three kiddos but it was more. I brought this up to my Primary doctor and again, it was brushed off. After MONTHS of feeling sluggish, continuing to gain weight, I was tired all the time, I started having anxiety attacks again, having hot flashes several times a night, couldn’t get warm during the day, having my own emotional melt downs multiple times a week, having a period for weeks and weeks at a time, then skin rashes breaking out all over my body – including my head which resulted in scabs on 75% of my scalp, debilitating headaches, muscle cramps and joint pain – I had ENOUGH. I made the first available appointment with a new primary doctor within the same practice. Within 3 days and several attempts to get the information for the doctors office, I was told that my TSH (Thyroid Stimulating Hormone) was at a 14.67. This is absurd! My numbers should be at ONE or less is ok too! And it was 14 times higher than it should have been. This is not a small increase – I felt like I was dying but because of my anxiety, I kept it inside until I had more than I could handle.

Trust me, I am the first one to admit that we must be our own advocate – I should have know this from the years and years that I went undiagnosed while the cancer spread to my lymph nodes and both of my lungs. But sometimes we forget and trust that others have the best of intentions. But goodness gracious, no matter your situation or medical conditions, please trust your gut. For the 3rd time I am looking for new doctors. It is their job to help me. If they can’t, you move on to someone else because if not, you can go through several months of not being your best self. I have lost it on my family and missed out on things with family and friends because of it. I can’t get these months back but I can take charge of taking care of myself again. Never give up and always reach out to others for help.

For those that have Thyroid Cancer or other related Thyroid issues, I think we can all understand that our fight it never over. No matter how many people or doctors or professionals tell us that it’s the “easy” cancer. Know that you are NOT alone.

Always,

Kat

The words that every ThyCa patient waits for….

No. Evidence. Of. Disease.

It’s been one year, five months and 22 days that I had to wait to hear those words. But I can tell you, of all the dreams and visions of the way I thought I would feel when I heard them, are nothing compared to how I felt at my appointment the last Thursday as the words came out of my Endo’s mouth.

When you look up the definition of “No evidence of disease” you get a multitude of things that come up. First, it talked about Survivorship (before and after treatment) – wow! Those words just make me smile because that’s exactly what we’ve done, we’ve survived and we’ll have to survive every day for the rest of our lives. That might seem dramatic to some but just keep in mind that with every cancer there is a chance of reoccurrence, it doesn’t matter how fantastic your surgeon is (which mine was), or how high of a dose of treatment you take – cancer can always come back.

I can only speak for myself and say that I am a very optimistic person but when you are diagnosed with cancer it’s an every day challenge. Not necessarily to remain positive but it’s almost like you need to coach yourself, especially on the bad days that everyone has. I am often told to “stay positive” throughout my journey, even if I bring up statistics or just being realistic for a moment. But I can tell you, I will always be positive.

  1. I am positive I will be strong enough to handle whatever comes my way.
  2. I am positive that I remain proactive with my health throughout my ThyCa journey.
  3. I am positive that if I do experience reoccurrence, I have family and friends that help support me no matter what, and especially on my worse days (#noonefightsalone).
  4. I am positive that there is a higher power looking over me.
  5. I am positive that I will never give up HOPE that there will be a cure one day.

The second definition of NED is: No evidence of disease (NED) is a term that is used when examinations and tests can find no cancer in a patient who has been treated for cancer. Which is amazing news!! So basically I was NOT expecting to hear these words for another year – especially after the discussion with my Nuclear Medicine doctor a few weeks ago. They determined that the tumor/thyroid tissue is still present on the back side of my thyroid bed and because of that, I would need to be considered for another dose of RAI or surgery. His recommendation was to wait a year to determine if it’s growing and/or how fast it’s growing. With that being said, I am already at almost a 1/3 of how much RAI (radiation) that I can use in my life time so they aren’t sure that treatment was the best option (keeping in mind that Thyroid Cancer has one of the highest reoccurrence rate across all the cancers). Of course I had to sit on this for a good three weeks before finally getting to speak to my Endo (she was out of the country on vacation). But when finally had my appointment, it was the BEST news!!! She confirmed that after comparing all of my scans, blood work and tests over the last year and a half, that they are VERY confident that the tissue remaining, is in fact benign. Therefore, I have my NED!!! 🙂

With all this being said, I am a survivor. I have beat cancer. And if need be, I can do it again. And I couldn’t have done it without each and every one of you so THANK YOU!! Going back in 5-6 months to have my next set of ultrasounds, blood work, and tumor marker done! 🙂

ThyCa Tattoo

So I did it. I finally got the tattoo I had been waiting to get since the day I was diagnosed. Originally I wanted to wait until I was told there was No Evidence of Disease (NED) but with the recent news that there is still some additional work needed to do, I decided now was the time. I don’t have control over much in this situation BUT I do have control over this and this makes my heart happy. 🙂

So here it is….

Kat ThyCa Tattoo

I wanted to explain what this tattoo means to me because I have thought about for about a year and a half now and carefully put it all together. My brother helped bring this tattoo to life as it was a compilation of several different ideas.

  • First of all, there is the obvious Thyroid Cancer ribbon which is teal, pink and purple. I just didn’t want the original ribbon, I wanted something a bit more original.
  • Feather: So I wanted to incorporate a feather, as the eagles feather stands for courage and strength. Anyone that has dealt with cancer or an illness has had to fight harder than they ever have in their lives, and that couldn’t be more true for my journey over the last 1 and a half years.
  • Sparrows: They derive power and protection in their numbers.They survive by traveling in clusters and are a community that does not do well when by themselves. I couldn’t think of a better symbol for my “posse”, my support group of family and friends that helped me every step of the way. Whether you are there in the day to day process, or someone that randomly sent a message to check on me, big or small, you were a part of my clan of sparrows and I thank you!!
  • Heart: well that was a last minute addition (thanks Scottie!) but this means multiple things to me – overall, Thyroid Cancer was never who I became, it was a small part of me and what I went through. I will never be the same person I was before 10.23.14 but I have become a better person because of it. But it also stands for all the love and support I have received from family and friends that have always been in my life, but also to the group of amazing people that have come into my life because of Thyroid Cancer.  Although it’s a crappy way to meet, I don’t know what I’d do without the fellow ThyCa survivors and supporters who truly understand what I am going through.
  • Date (didn’t make the cut): So originally I wanted to include the date that I was diagnosed (10.23.14) because that date will always be the start of the “new” me but unfortunately, the numbers would have been too small to be able to see it because I didn’t want them to stand out as they weren’t as significant as everything else.

So there you have it. I am so excited to have this tattoo, and of course it’s on my left forearm where it can be seen by everyone (also covered for work, if need be). It can be a conversation starter – bring on Thyroid Cancer awareness!! It’s a reminder that I am a fighter. And no matter what I find out next week with next steps and if I need to undergo another RAI treatment or not, it’s going to be ok.

 

Original drawing by Scottie and completed outline of tattoo:

 

Goodbye 2015, C’mon 2016!!!

We did it – made it through another year and I have determined that 2016 is going to be my year! Oh and yes, I’m finally posting a “end of the year” post lol. I’m only 19 days late….but better late than never.

So 2015 was a year full of emotions, trials, tribulations, and the “old/new” me. I started the year weak and confused but ended it confident AND finally finding my new “normal.” Back in January, I was only 4 weeks post-op following my TT and left neck dissection. Still very dependent on family and friends – not just physically, but emotionally as well. February and March were filled with doctors appointments, radiation, and a roller coaster of emotions that came with each not-so-great results at my appointments. Over the summer I went through anxiety attack after anxiety attack while battling depression before finding the right meds. And with each medication change, I had to go through it over and over again – feeling hopeless. Finally getting some good news in September, letting me know that the radiation had done it’s job and cleared my lungs so just waiting on the 12 month visit to find out about the rest (c’mon March 2016). But this was the first time that we had a few steps forward without falling backwards.

So in case you noticed, I said I wanted the “old/new” me because for most people, they wish for “new year, new you” but that’s not what I wanted at all. I wanted the OLD me – before ThyCa. I wanted the person that could stay level headed about simple stressors like bills or getting overwhelmed by kids or a dirty house without having an anxiety attack. I wanted the person that could ride a bike or run down the street with my kids without having an asthma attack. I wanted the person that had long pretty hair, the person that didn’t have to cut off her hair because it was falling out in clumps due to my medication increase (because I have the good cancer….*rolling my eyes*). I wanted the person that didn’t feel exhausted 24/7 or fall asleep every time I sat down which caused a lot of missed alone time with my Hubby. But this past fall, with the help of my therapist (lol), that’s when I realized – I will NEVER be that person ever again. Like ever. When I was diagnosed with Thyroid Cancer, I was no longer that person. Then when I went through surgery and radiation and everything else in between. All of this changed me into the person I am today. So this year I am willing to accept that and just hope/pray that I become the best person I can be. With that, I hope it’s a mix of who I used to be and who I’ve always strived to be. I hope to control my anxiety (with the help of my medication lol), by knowing my triggers and knowing when to take a break. I hope to learn that I can spend time with my kiddos without physically keeping up – I never turn down some cuddle time. I hope to find other ways to be more active and maybe more natural ways to be more alert so I never miss a minute BUT to allow more time of REST so that I can take full advantage of the time I’m awake. But more than anything, I hope to be the best person I can be – no matter if that’s the old OR new me!!

So one of my goals for 2016 is to spread more awareness and reach out to more people about ThyCa. Just in the last 6 months, I have had 3 people come to me with a friend that had recently been diagnosed. They all wanted me to reach out for support and a listening ear. I can’t tell you how much that meant to me – especially to someone that started off with not even know what the Thyroid did. Just like with this blog, I not only wanted to give insight for family and friends that wanted to know how I was doing – I wanted to give HOPE to those going through the same thing. I was lucky enough to have my Hubby’s cousin who allowed me to blow up her phone with questions on a daily basis. She will NEVER know how much it meant to me. To have someone that I could reach to for questions and for someone to fully understand every step of the way of what I was going through. That’s what I want to do – be there and spread hope.

If you are someone that needs a ThyCa buddy to vent to, just message me and I’m your girl! We need to stick together and be there for those who are in need.