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! 🙂

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.

Today Marks 1 Year

Well this is a day that has been on my mind for quite a while now and of course, with very mixed emotions. I remember the night before my surgery last year, I couldn’t wait to get all this behind me and I just kept thinking ahead, to be able to celebrate the one year mark because I knew everything was going to be so much better by then. It’s definitely been a roller coaster of events over the last year – from surgery to radiation, the constant change in medications, and the never ending doctors visits. But this was just a small moment in my journey…..

We all change with all the trials and tribulations we have in life. More than anything, I know that I am stronger. Every time I didn’t think I could handle any more bad news or another scan or test, I held it together. With every prick of the needle or side effect I had to endure, I held it together. With every question that I got from my kids asking if Mommy was going to be ok, I held it together. But just like with any process, you have to learn to let go too. And I did – many, many times. I can’t even begin to count the amount of times that I just broke down and cried, over every little thing. I tried to fight it once I got past the initial shock of the word “cancer”, but then I realized that’s just all part of the journey – knowing it’s ok to have good days AND bad days. There were days that I didn’t want to get out of the bed, there were days that I got the kids off to school then crawled right back in bed to just cry. BUT THEN, there were other days that I drove home and belted out & at the top of my lungs “Fight Song” because that’s what I needed to get through that moment in time when I thought I was done putting forth the energy to keep going and fighting. I have had to learn that I can’t have control over everything, no matter how hard I try. You just have to go with the flow and know that everything happens for a reason, but for that same reason, you have to learn when to fight and when to let go. There were days that I would give in and other days that I would fight to no end. I have learned that you can’t get through something like this alone – and makes me that much more appreciative for all of my amazing family and friends that stood by me every second of every day and gave me that push when I needed it or the shoulder to cry on when I needed it more.

In the recent weeks, my hormone meds were increased and with every change in medication, it takes time for things to get adjusted. But the more and more they kept my Thyroid hormones suppressed, the harder the side effects were to deal with. I felt like I was taking 10 steps back to 6 months ago when everything was out of control. I was finally starting to get into a routine and getting to feel a sense of normalcy prior to this last change. So when I got the call that my TSH numbers were going up and they needed to increase my meds to keep things leveled out, I just lost it. I didn’t want to go through all that again. The exhaustion, muscle cramps, the shakes that never went away, heart palpitations, unable to catch my breath, extreme hot flashes that would last hours, massive hair loss (resulting to falling out in clumps) and unable to keep my thoughts on anything. All of this brought my anxiety back with a vengeance, which in turn, intensified with each of these side effects.

So with all this being said, I was having a hard time thinking how I was going to “celebrate” today when I felt I couldn’t be happy with my current state. So without coming off like I had nothing to be grateful for, I then realized, I just need keep moving and know that all is going to be ok. So for now I can appreciate the journey over the last year because I am still here and that can not be said by all those who have been diagnosed. Today is going to be an emotional day for me and I might not want to do anything this year but that’s ok. Maybe next year I will think of something to do in honor of this day.

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Much Needed Update (6/17/2015)

Oh goodness….lol I realized the other day that it’s been a while since I’ve updated but it wasn’t until tonight that my Hubby reminded me that I never let everyone know everyone how things went after my follow-up scans. Obviously, there has been a lot to happen in the last 3 months so I will update below! 🙂

1. Post Therapy Scans (3/10/15)/Follow up with Endocrinologist (3/26/15): 

After meeting with my Endo to discuss the results and hearing back from the Nuclear Medicine Dept., they did determine that I had two very small nodules in both my lungs but it looked like they have already shrunk enough to not need surgery – the radiation had already begun to do it’s job but would continue to do so for a total of 6 to 12 months. With that being said, they would do a follow up scan at 6 months – if there was any sign of mets. in the lungs (even if it were just microscopic), they would do another dose of RAI. If there is no sign of it, then I would still continue to do my follow up at 12 months, which is typical. Obviously, this was good news to know that the RAI (Radioactive Iodine) was doing it’s job but very nervous to know what was to come. In other news, my hormone meds had to be adjusted again….sigh – another couple months of getting acclimated to the new meds.

2. Anxiety….again:

Of course, as with each time my Thyroid hormone has been increased, my anxiety meds has needed to be increased as well. But when you deal with anxiety issues on a day to day basis, you have a constant battle with yourself – I knew I should have talked to my doctor a long time ago letting him know that it wasn’t working any more BUT instead, I worried about having to change anxiety medications and going through a month of changing (basically having to go without during that time). So in turn, I went without enough anxiety medication for 3 months because I didn’t want to deal with that. It just goes to show you how unrealistic something might mean to someone but to someone with anxiety, it makes perfect sense. FINALLY, I went back to my doctor and they gave me an “add-on” anxiety medication because mine is just an one dose extended release and unable to increase the dose – so it was an easy change that I could have avoided many, many anxiety attacks if I would have just talked to my doctor. Eventually, hopefully, I will learn. 🙂

3. Thyroid Ultrasound/Lymph Node Mapping – 3 Month Follow Up after RAI (6/10/15)

  • First of all, how is this even possible, how has it been 3 months since RAI (aka internal radiation) already??? They do this just to look at the Thyroid bed for any abnormalities and they do another lymph node mapping (which they did prior to the surgery). As a reminder, they removed 56 lymph nodes from the central and left sections of my neck during surgery. During my whole body scan, they found one additional lymph node (which is not uncommon when there were that many to remove – actually it’s crazy that there is only one left over) in the left section of my neck and mass/or very large lymph node behind my Thyroid bed. When they started the ultrasound, it’s always so uncomfortable because you basically have to bend your neck backwards so they can reach everywhere they need to be. They first checked my Thyroid bed (where my Thyroid was originally) to see if there was anything there that they could see that would be of concern and there was not. Then they moved on to the the lymph node mapping – starting in the central section of my neck. All of this is fairly uncomfortable, as I mentioned before, not only because of the position that you have to lay, but also because they need to put some pressure on your neck to get a better picture and in order to move the device in different directions. After not seeing anything, she moved onto the right sectioned my neck, and again saw nothing – this side was never a problem for me as they have never see any abnormal lymph nodes. Moving to the left side they knew I should not have any lymph nodes because it had only been 6 months following my surgery. The one lymph node they saw in the WBS (whole body scan) was no longer seen so that must have shrunk with the RAI – yay! Then checked along my collar bone as they did before and that’s when they found two new lymph nodes….yes two new ones and at that point I could no longer keep it together – it took everything I had not to have another anxiety attack. My SIL had been there to hold my hand the whole time and kept trying to make eye contact and I just couldn’t – as I had tears rolling down my face the Ultrasound Tech asked me when the last time I had my Thyroglobin levels checked (this is what typically detects cancer levels for Thyroid Cancer patients – I get my tumor marker checked every 3 months). I knew at that point it was not good at all. I let her know that I just had my blood work done yesterday but hadn’t gotten the results yet – she said that I should try to get them back soon. At that point she continued with the exam and measured the lymph nodes – then explained that one of them looked ok because it was “fatty” which is normal. But the other didn’t look so good so she was going to get the Radiologist to take a look and we would go from there. Lastly, she looked at the lymph nodes just below my collar bone – they do their best to check the lymph nodes over the chest and they didn’t see any abnormalities so again, that is great! When she stepped out, I started balling and my SIL gave me a big hug and made sure that I knew that she was there. Because my Hubby was still on night duty, he was home sleeping and she asked if I wanted her to call – and of course I did. We had some troubles reaching him but she continued to try. When the Radiologist came in and did the same exam and basically confirmed what the Tech explained – they are one of the few places in the country that will do a biopsy and will do a pathology report and provide within minutes but all she needed was my Endocrinologist’s approval. We were taken to a VERY small changing room (yes…a changing room) to wait to hear back as to when we could do the biopsy. A VERY long 45 or 50 minutes later they finally reached my doctor and we were ok’d to do the biopsy. When I did the biopsy before – it was a very long drawn-out, outpatient procedure at an hospital. But they just took me back in the same ultrasound room, same gown, had me lay down, and without any numbing meds just then and stuck me. And that wasn’t before she informed me that because it was very close to my scar – there was a huge build up of scar tissue, consistent with an extensive surgery like mine (I can’t remember what she called it) and even huge motorcycle macho men scream and cry like little girls so if she hits this spot it’s going to hurt really, really bad. Of course, my wonderful SIL, tried to calm me down because they wouldn’t allow her to hold my hand, she was trying to talk me down, but the Radiologist just kept talking about how much this guy screamed and cried and they had to hold him down. Lol thankfully she didn’t hit that spot and it wasn’t as bad as I thought it was going to be without the numbing meds. And sure enough, within 3 minutes we received great news of the lymph nodes being BENIGN!!! WHEW!! 
  • At that point I was able to shed some more tears: happy, relief, scared, sad, mad – all at once. Of course, happy and relieved that everything is good. Scared that it could still turn into something later. Sad and mad that this will be something that I will have to deal with, with every 6 month ultrasound and every 3month tumor marker and every yearly Whole Body Scan. Eventually I know that it will get better but in the mean time, I was on a emotional roller coaster that I couldn’t get off of. Then when I called my family to tell them what had happened that day – I couldn’t even pretend that I was happy. And I know a few people were upset with me and/or a little confused because they thought I was being pessimistic or negative about things when I needed to be positive but I wasn’t ready. I needed a couple days to get past it. I needed to cry it out and be mad. I am a still positive person and know everything is going to be ok but this is scary still. And this is again why I have created this blog – because Thyroid Cancer (nor ANY cancer) is NOT the good cancer!!! 

I plan on keeping up with my blog again – I’ve forgotten how much it helps me and I’ve even gotten a few requests from fellow ThyCa Survivors! I love it – it’s good to be back! 🙂

The Beginning After The End

(ORIGINALLY STARTED THIS BLOG IN 2012 ON ANOTHER SITE)

Well I am not sure why I feel the need to start this blog but I like to talk and write and I can do either of those here. My story is pretty much all over the place and I plan to do a tell-all over time but here is just a start. 🙂

I am a Momma of the two most wonderful children (a little biased, I know). I am very much in love with Spencer, my husband (since 2013) and my best friend (since 2002)!!

I moved to NOVA (Northern Virginia) in 2011, and although I am not a huge fan of the city life, I moved North and we bought our first house in a small town about 45 miles southwest of DC. I have a pretty decent job that allows for me to work from home!

So basically things in my life have pretty much always been crazy but I have one of the best support systems (as I like to call my “village”) – my husband, kids, family and friends – so I know I/we can get through anything. I know that I haven’t always made the best of decisions but in the end I have learned and changed to make things better. You can’t always just sit back and hope for things to get better – you have to do something about it.

And that’s what this blog is about:

“Life isn’t about waiting for the storm to pass….it’s about learning to dance in the rain.”

Conor on golf cart

Mileigh Redskins

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