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

Relay for Life Team: All Night for the Fight

Ok yall, it’s time for Relay for Life!!! I couldn’t be more thrilled to have our own team this year and it’s going to be AWESOME!

An introduction to Relay for Life:

I’m going to be completely honest, prior to being diagnosed with Thyroid Cancer, I had remembered hearing about it Relay for Life but had never participated in one. I was asked by my dear friend and neighbor last year to join her team, not truly understanding what it was all about. I can tell you, this experience was life changing. To see so many people coming together to help bring awareness, raise money, and support each other was just an incredible thing – and of course, it was FUN! Please, please, please come and hang out with us! ­čÖé

What is Relay for Life:

  • It’s an organized, overnight community fundraising walk for ALL cancers
  • Teams of people camp out around a track
  • Members of each team take turns walking around the track
  • Food, games, and activities provide entertainment and build camaraderie
  • Family-friendly environment for the entire community

What makes Relay for Life more awesome?

  • In more than 5,200 communities and 20 countries, Relay for Life events comprise the signature fundraiser for the American Cancer Society, raising more than $400 million dollars.
  • Survivors Lap: All cancer survivors at the event take the first lap around the track, celebrating their victory over cancer while cheered on by other participants who line the track.
  • Luminaria Ceremony: Takes place after dark, so we can remember people we have lost to cancer, honor people who have fought cancer in the past, and support those whose fight continues. Candles are lit inside of personalized bags and are placed around the Relay track as glowing tributes to those who’ve been affected by cancer.
  • Fight Back Ceremony: This emotionally powerful ceremony inspires Relay participants to take action. The Fight Back Ceremony symbolizes the emotional commitment each of us can make in the fight against cancer. The action taken represents what we are willing to do for ourselves, for our loved ones, and for our community to fight cancer year-round and to commit to saving lives.

What to expect at a Relay Event?

  1. Relayers are welcomed in the Opening Ceremony.
  2. Relay starts with the Survivor Lap, when survivors walk to celebrate their victory over cancer.
  3. The Caregiver Lap recognizes those who have given care to cancer patients.
  4. All of the Relay teams are invited to walk together during the Opening Lap.
  5. Luminaria bags and candles are lit during the Luminaria Ceremony to honor loved ones who have passed or are fighting the disease.
  6. Individual Walking is observed throughout the night with Family Games, Activities, and Entertainment.
  7. The Fight Back Ceremony helps close the event. Relayers take a final lap and pledge to take action and spread awareness of cancer research, treatments, and prevention.

How can YOU help?

  • Join our team!! Seriously, it’s going to be a BLAST! Whether you can come for an hour or all night – come hang out, walk a couple laps with us and celebrate those that are fighting and honor those that we have lost.
  • Help raise money – share our team link (see below) to your Facebook page, Twitter, Instagram, or any other social media. It doesn’t matter if you can give back $5 or raise $50, anything helps!!
  • Donate a Luminaria Bag/Torch┬á– You can choose to decorate a bag (see me for details) or you can purchase online and the event will have a bag for you lining the track, including “In Honor Of”, “In Memory Of”, or “In Support Of”.
    • White Luminaria Bag – $10 (or 3 for $25)
    • Blue Luminaria Bag – 3 for $25
    • Tiki Torch of Hope – $30 (or $35 includes a keepsake)
  • Come support us!! Even if you aren’t interested in walking with our team, just come be apart of this fantatic opportunity – come watch the opening ceremony, have a few laughs, etc. Just come, but I’m going to warn you, the energy is contagious and you might not want to leave! ­čÖé

Event Day Logistics

  • When: Saturday, June 11, 2016 from 6pm to 7am
  • Where: Fauquier High School (702 Waterloo Road, Warrenton, VA)
  • What should I pack?┬áfolding chair, a change of clothes, a blanket/pillow, warm clothes (in case it gets chilly), bug spray, and snacks.
  • Where to meet?┬áwe have a tent set up – you just have to look for our sign with team name: All Night for the Fight!
  • Are you a Survivor? Make sure you sign up online as one so you can receive the t-shirt. And please come early to receive your complimentary food in the Survivor tent.
  • Food/Drinks? Yes there will be vendors/other teams selling food/drinks and of course, there will be water provided┬áfor participants.
  • Bathrooms? There are bathrooms on site – duh! ­čśë
  • Kids? Of course! You are never too young to Relay! Just make sure you bring all the necessities! And if your child under 18 years of and will be walking, be sure to bring your signed Youth Participant Agreement to the Registration table.
  • Do I have to walk the whole time?? NO! In order to represent the fact that “Cancer never sleeps”, we ask that each team has a representative walking the track at all times. This should not be just one person – team members can take shifts!
  • Want to sleep? You are more than welcome to take a nap in the tent, OR go home, take a name and come back! Participants are not required to stay up all night.

Relay for LIfe

Thank yall for taking the time to read this. I just wanted to answer any questions that you might have about this amazing event and hope to see YOU there! ­čÖé

Our Team Link: 

http://main.acsevents.org/goto/FauquierAllNightfortheFight 

Radioactive Iodine Therapy (RAI) – Weeks 1 and 2

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I felt that I was finally emotionally ready for another post. I know that its been a good couple weeks since a post event though that was not my original intention. I wanted to post every couple of days to let everyone know what every step of the process was and everything that went into my therapy, especially for someone that was about to go through it themselves but I found that I couldn’t handle it, emotionally, mentally, and physically. The last 2 1/2 weeks have been draining, as I’ve spent most of th´╗┐e time driving back and forth from Bealeton, VA to Washington, DC for my daily appointments. This is “only” a 48 mile hike much more goes into it than it may seem. 

On most days I was in the Nuclear Medicine office for about an hour but there were about 3 days a week that I had additional scans that needed to be done. Just about every day for 2 weeks I had to have a Whole Body Scan and blood work to determine how quickly my body was metabolizing the small tracer dose of the radioactive iodine (given to me on 2/18). Each of my arms were completely bruised from getting bloodwork each day but you do what you gotta do! I was put in isolation at home for 48 hours where I could not be more than 3 feet away from someone and could not be around someone for more than an hour. My kiddos stayed with family during this time and even missed a little school (thankfully only one day due to some snow days). There were other days that I was there for 3 1/2 hours where I went from one scan to the next for anywhere from 20 minutes to 40 minutes per scan. I am somewhat claustrophobic so my anxiety was through the roof on these days as the scanners came just an inch from my nose and I had to fast on these days so I was always very dizzy, tired, yet had a hard time getting through it with a major headaches from not eating. Needless to say, by the time I got home, after another 2 1/2 hour drive home, I was beat and wanted to do nothing but sleep.
 

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I didn’t have to drive into DC by myself because my amazing SIL offered to drive me into DC to each of my appointments. I seriously don’t know what I would’ve been able to do without her because I was in the process of transitioning to new anxiety meds. Without her, it would take, at least, 4+ hours ONE WAY to get to each of my appointments without the use of the HOV lane, not to mention, I would not be able to cope with the traffic at this point with my anxiety or the loneliness of driving that distance or depressing sitting in the Nuclear Medicine office. Let me tell you, I was the youngest one there and probably one of the few patients that still had their hair. This also meant that with every snow day we had to adjust our schedules to make sure each of our school aged kiddos were taken care of and our younger kids were with my MIL, or our neighbors. Let me just tell you, this took a lot of planning because this just happens to be the most snowy time of the year for the DC Metro area – go figure right?!?! For Fauquier County alone we received 6 snow days, 2 two-hour delays and 1 early dismissal due to snow….yes this was all within a 2 1/2 week time period. And I am currently writing this on another snow day…..on MARCH 6th! 

Back to my driving issues/anxiety….most people didn’t know that I was driving to McLean once (sometimes twice) a week to train the person that would be covering my work during my leave of absence. I am lucky enough to have the ability to work from home most days. My anxiety was so out of control during the beginning of February that I was having 4-5 anxiety attacks per week and the anxiety medication I was put on was actually making me fall asleep at all hours of the day. My Hubby has been working night shift for over a year was working extra hard at home to make sure the kids were being taking care of before leaving the house so that if I did fall asleep, everything would be ok. I also had many family, friends, and neighbors calling constantly to check on me and ready at any moment to take my call if I was driving and/or needed help to stay awake to make it to my destination. Well after making another trip to McLean for work, I ended up falling asleep at the wheel and rear-ended someone. Thank God the man in front of me was OK, my kids weren’t with me, my van was fine and and SUV in front had minor damage to the bumper. But of course this put me into another anxiety attack as I couldn’t find my insurance card (we just renewed so I guess I didn’t put the new cards in the van) but the guy was SUPER nice and let me email him my information when I got home. As soon as I drove off another anxiety attack came on, I pulled over and my MIL calmed me down. Once I finally got home, I immediately called my doctor and we went through a few days of changes before we finally decided to change meds all together. I told this part in detail because we all know our bodies, I should NOT have let the excessive sleepiness go on for 4 straight days and let this happen. The doctors have let me know that might be part of my new norm but it might just be that I need to find my “triggers” and ways to calm myself down. I have sense been changed to a new anxiety medicine and LOVE it! It’s been 3 weeks on it and 1 1/2 weeks since my last anxiety attack! Even with all this craziness going on in my life – I’d say it’s definitely working! Especially when my last anxiety attack was when we had to drive home in the sleet/snow! 

I plan on finishing part two of the story in the next couple of days but I felt up to putting a few words down today so I took advantage when I could. I did want to take a moment and say thank you to everyone to that has been there to help, support, love and listen when we needed it most!

Post-Op Appointments

My first post-op appointment was with my surgeon and just 7 days after my release from the hospital. I really felt great about seeing him and even better about getting out of the house again. The only other time I saw this office since surgery was to have my drain removed 4 days prior (all 12 inches of it pulled from beneath my skin – pretty disgusting!!!). I also saw my Endocrinologist the next week just to do another follow up on my Thyroid medication and discuss my pathology report again.

My surgeon just went through everything again as to what he did – as we all know, I was a bit out of it after surgery and on a few pain meds so I may not have remembered a few minor details pertaining to my surgery haha. My surgeon and Endo both clarified that things were a lot worse than they initially thought. They knew that there was a lot of lymph node involvement but not to this extent. They removed 56 lymph nodes – 7 from the center (front of my neck, over top of my thyroid) and 49 on the left side of my neck (much deeper than initially thought and had to clamp my neck muscles back longer to remove them). They also thought I was only a stage one – just a little background info, if you are under the age of 45 with Papillary Thyroid Cancer, there are only 2 stages of Cancer. After my surgery, they determined that my surgery was more advanced than originally thought and officially staged me at Stage 2 instead for multiple reasons. Because┬áthe amount that it had spread already already, in additional to the type of aggressive tumors located in the actual thyroid. They found 7 nodules (or tumors) in the Thyroid and they were called multifocal – which are actually uncharacteristic of Papillary.

Now with each of these appointments, as you would expect, it was extremely overwhelming. My Daddy came with me to my Surgeon appointment and Mom Brady came with me to my Endo appointment. Thank God for that – I swear, I with each of the appointments, I’m only able to digest the first 5 or 10 minutes of information then it takes the next 24-48 hours to let the remaining fully sink in. That’s the combination of talking it out with the other person(s) with me, thinking about it, telling my Hubby on the way home, then sleeping on that night then BAM – that’s when I feel like it all finally comes together. I was just told I have aggressive tumors and Stage 2 Cancer. HOW? I’m 28 years old. I have 2 babies at home. And I still want more with my Hubby who want to pass his name on himself. Did she say I needed Radiation? Oh wait – she said I needed Radioactive Iodine Therapy which is much easier on the body. Oh goodness. After each of these appointments I always have ┬áat least one good cry – you know that ugly cry that everyone has (you know what I’m talking about – anyone ever listen to Dane Cook haha). And this is when that happens, when it all hits me a day or two later when it just hits me and it’s so overwhelming.

So my next step will be to have Radioactive Iodine Therapy but I needed to wait a minimum of 6 weeks after surgery. So my next post will be dedicated to what is involved in the process and how this will help my recovery process. ­čÖé

Symptoms….The Daily Struggles

I think the hardest part of hearing “you have the good cancer” was not just because there is NO good cancer or that the word “good” and “cancer” should never be allowed to be in the same sentence. But because there are daily struggles that even I didn’t┬árealize I would end up dealing with on a daily basis. I thought when I had my surgery and I had my radiation, my fight would be done. Over. But that has definitely not been the case. I’m not saying there aren’t other cases that aren’t by far more difficult, I’m just saying, mine isn’t “easy” like some might say.

Prior to finding out about my Cancer, I honestly don’t think I knew what the functions of the Thyroid was, much less where it was in my body – might sounds silly, I know. I knew I had heard many people mention they blamed their thyroid for their weight issues but I didn’t even know what that meant. But boy did I have a lot to learn!

I think one of the hardest parts of the last few months is the constant doctors appointments to figure out what a new symptom or side effect meant. I just recently started getting migraines (for the first time since High School) a few months ago – I know what a migraine feels like and these felt slightly different and by different, I mean I was losing vision in my left eye. And with my new “medical history” I talked to my Primary and he referred me to a Neurologist who conducted a MRI of the brain. They did find a small spot but they said it was consistent with those that had migraines. They also said that people that have migraines will have them come and go with their hormones – they will come around puberty, around the time you start having babies, then finally back around menopause. Makes sense. In the mean time, I am put on preventative migraine medication to hopefully get rid of these horrible migraines!! Of course we just wanted to ensure it was just a coincidence with the timing (they started about 4 weeks after being diagnosed). They did, of course, say some could be stress related as well – but hopefully that will change with time.

During the removal of your Thyroid, there are great chances of damaging or the need to remove your parathyroids. There are a total of 4, 2 on the top and 2 on the bottom near your Thyroid, which control your calcium and magnesium (among many other things in your body). I was VERY lucky that my surgeon was able to work around mine without having any issues. Sometimes, if there is any damage – they can actually chop it into little pieces and implant it into your shoulder muscles and it will regrow and function normally – how COOL is that?!?! It’s crazy how your body works!! Anyways, so after surgery, your body goes into “shock” and your calcium dips so most everyone is put on calcium supplements and that is why most with more extensive surgeries – to include the Total Thyroidectomy and Neck Dissections they will keep you over night to monitor your levels. My calcium was checked about a week after surgery and my levels were actually higher than “normal” levels which is great so I was taken off the additional supplement and back to just taking my “one-a-day” vitamin. Some of the symptoms of a calcium deficiency is numbing and tingling of the face, finger tips and toes. If it persists, it can quickly turn into muscle cramps or spasms, joint pain, and weakness all over. If it goes untreated, you will end up in the hospital and can have seizures or even heart attacks. Very scary! So when I started experiencing the numbing/tingling about 4 different days this past week and taking additional calcium didn’t help, I decided to consult with my doctor. After a long talk, I found out the following information: because of my cancer, she needs to suppress my body┬áto create “hyperthyroidism” to make sure my body doesn’t produce Thyroid tissue that could end up making my cancer reoccur later in life (which I knew that part). That brings on a whole new set of symptoms (in addition to the ones listed below) and one of the main one is anxiety. Apparently with the anxiety attacks that I knew I’d been having but didn’t want to talk to her (or anyone) about because I lead myself to believe that I was becoming a hypochondriac due to the fact that all these symptoms kept coming up – which she very quickly said I wasn’t making them up and all these symptoms were very real and that it was important that I┬ádiscuss them with her and others to know what was going on. But the anxiety attacks I was having were causing the calcium deficiencies. So more tests needs to be done to see what my calcium levels are and what supplements I need to be put on in the mean time. I was told to make another appointment with my primary to discuss the anxiety medicine I will be going on. So long story shorty – know you body and trust your instincts.

I know there are many symptoms that people are affected by when they are either hyper/hypo or have no thyroid. The below list are just those symptoms that I have personally struggled with. I just want to put this out there now: this is NOT a pity party in no way, shape or form. I have good days and bad days just like every one else. I just wanted to explain the reasons why the struggle is much harder than a quick surgery to remove the cancer because that is almost NEVER the case. I just wanted someone to take me seriously when I say I’m tired, a nap may not fix that. Or if I’m just out of sorts today, I might just need some time to myself.

Symptoms:

WEIGHT (Hypo/No Thyroid): For the last several years I have struggled with weight gain and that was what made me continue to follow up with my doctor. I have always had pretty good metabolism so I knew there were some issues somewhere. I would diet for weeks, exercise, and try everything with no satisfaction – I would only gain weight. It ended up gaining┬áabout 45 pounds in about 4 years.

HAIR (Hyper/Hypo/No Thyroid): I’m pretty sure if I’ve showered at anyone’s house they would know what I’m talking about – I could clog the drain in the shower in the matter of 2 days or cover the floor of someone’s bathroom just after blowdrying my hair. Every day I would just run my hands through my hair to put out enough to make a wig. It was very depressing and knew it was always a matter of time before I would go bald! Not to mention, needing a hair trim after just a couple weeks because it would get so dry and frail (even when not using my straightener).

HEADACHES (Hyper/Hypo/No Thyroid): I have always had pretty bad headaches all my life and I’m sure some of them might be stress related but I have been told that they can be hormone related too. With all the hormones in my body that are going crazy (or the lack there of) it wouldn’t be out of the norm to experience it for that reason.

SKIN (Hypo/No Thyroid): I know most people deal with dry skin, especially in the winter, but you know how your hands and face can crack they are so dry? Well I have gotten that on my knees, feet, and elbows – and even a few times on my shins! It’s not fun and doesn’t matter how much lotion I put on, my skin is always extremely dry and itchy year round.

SENSITIVE TO COLD (Hypo/No Thyroid): I often times carry around a blanket (and now a heater) from room to room in my house. My Hubby is very hot natured so I normally have to double up on the sweatshirts/pants/blankets when he is around lol. It is always like a feverish cold to where you can’t get warm – another reason I prefer to always live in the South!

FATIGUE (Hypo/No Thyroid): I know as a parent (especially a Mom) we just keep going until we collapse but I feel this especially that much more true with hypothyroidism (or without a Thyroid). I feel exhausted all that time and all it takes for me to sit down for me to fall asleep on the couch. If I could sleep standing up, I’m sure I would. I can get 2 hours or 12 hours of sleep – I will still be exhausted – nothing seems to help.

CHANGES IN MENSTRUAL CYCLE (Hyper/Hypo/No Thyroid): For a woman, this is a big deal in so many ways. The hormones need to be consistent in your body to remain stable and if they are constantly off, then they can create many problems – that can be with your moods, as well as fertility. This, for obvious reason, can keep you from becoming pregnant or cause you to have miscarriages.

CONSTIPATION (Hypo/No Thyroid): This might be TMI so I’ll keep it short….plain and simple – it happen and it hurts. This can affect your eating and your digestive tract and can pack you up for days on end. Not only does your Thyroid cause you to be constipated, once you have your Thyroid removed, some of the medications you are put on following your surgery, also causes it so it’s a double whammy.

DEPRESSION (Hyper/Hypo/No Thyroid): I think one of the worst symptoms (thankfully one that I have yet experience) is depression. I know that your Thyroid controls most of your hormones and depression is a big one. Often times you feel so alone through these struggles and even with all the support I have – you feel like you are going crazy and might be making it up in your head. I know that I am NOT depressed but like I said, when you are going through this battle, it is so easy to fall into this hole where you just don’t think you have the strength to get out of bed that day. I know everyone has these days – especially nasty rainy Mondays, but imagine if you had these a few times a month. It can make it hard to relate sometimes. If you are struggling with something, maybe with conceiving or even with depression then it’s hard to be around someone with a new baby or someone that is extremely happy. So I feel like it might be really easy to fall into that.

I would love to know if anyone else out there has any other bad symptoms they feel like it’s worth adding? I know there are a few other big ones but I just have been affected by it!

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