Kaitlin's Story

Hello my lovely thyroid haters..

So I did not post last week due to being extremely exhausted and just overwhelmed with this life with no thyroid. I still can not believe how much my life has been affected by this measly little gland called the thyroid. Pfft. Any ways, Im back at it and ready to kick lifes ass!

Today Im sharing with you the story of a dear friend I have known since I was a little girl. Shes a beautiful, talented, giving and all around amazing woman. Ladies and Gents, meet Kaitlin.

So at the ripe old age of 20, I had been working at my job as a 911 operator for two years, and we had just switched to night shift (we switch every 4 months).  I was working out trying to stay healthy because we all know what happens when your body gets its sleep pattern out of wack, you normally get sick!  Well I started gaining a good bit of weight, like 5 lbs every 3 weeks.... I kept saying it was "just muscle weight" I had no idea that there was something going on inside my body!  In my mind, "IM ONLY 20,  I'M INEVIDABLE".   It was about 5 months later that I started getting really sick, I was in and out of the doctor, missing work, couldnt get out of bed!  One doctor visit, I went because I couldnt break my fever, thad a paramedic check me (while at work) the paramedic told me I needed to go somewhere asap, my fever was spiking around 104.1.  I spent 4hrs at the local urgent care, and after blood work (they never checked my thyroid levels) , urine tests, flu tests, strep test, mono tests, the list goes on... They came to tell me "I am really sorry to tell you this, but we dont know what is wrong with you."   I left there with so many questions... at this point I knew there was something wrong but didnt know what!  I did a lot of research, but never had the guts to go to the doc and try to diagnose myself , and tell someone who has gone to scool for internal medicine, and has worked in the field longer then Ive been alove, how I think they should do their job!  So I waited it out, knowing our yearly health screaning was right around the corner, and they check all that!!  So I get my results back and low and behold , My TSH was really out of the norm (cant remember the numbers exactly) I also had very high white blood cell count, high glucose, high blood pressure, the list could go on.  At this point, I feel somewhat relieved... but scared all at the same time!  I didnt know what that all really meant, and I didnt know where to begin.  I knew I wasnt, as some people were calling me, 'crazy' or a 'hypocondriac' ... There was something medically wrong with me! 

I then started the process of finding the right doctor, ( which has taken me 4years ) I have now gone through 4 different doctors and sooo many different millagrams of medicines, but my symptoms are still there!  My first doctor, looked over my lab numbers and told me, "I think you may have leukemia, due to your white blood cell count, and your border line diabetic"   My heart sank, I went to this doctors appt alone, thinking 'I'm a big girl, I can do this alone'  at that moment, I was terrified.  We then began lots and lots of extensive blood work, and I DID NOT have leukemia, I WAS border line diabetic, and I had  a Hypothyroid.  Within a year of being undiagnosed, I had gained over 70lbs, once I was put onto Levothyroxine 125mg I dropped about 30lbs... but then my levels were showing hyper and the doctor reduced  my dosage and I gained about 10lbs back.  I have an everyday battle with myself, to just GET OUT OF BED!   My medicine has gone from 125mg to 100 mg to 125mg to 50mg and now I'm at 25mg, and at one point I, myself, changed my dosage... I knew my levels were out of wack, and I went to the doctor, they did my lab work, and they called me the next day to tell me that my levels were "fine".   I then went to a different doctor two weeks later for another opinion, my levels were far from fine, I was showing severely Hypo again, with all the symptoms! Obviously, my doctor at the time didnt have enough time to read the results right , or didnt care enough!  This was when I found my new doctor, that I see now, she really scared me though, which I think I needed to realise just how serious my disease is... she proceded to tell me that with  thyroid disease, you can become infertile, and not have children.. Im only 24 now, I WANT KIDS!  No one had told me that risk factor this whole time, and this was just a year ago... she has really put it into realistic terms with me, and I truly appreciate that with her! She has recently diagnosed me with Hypertension as well, after having severe migraines, and lots of testing... she believes it is due to the weight I have kept on for over the years.  I am, at this time, having another 'levels out of wack' time, and will be going to see the Doctor next week for more lab work and hopefully changing medications! :) It is a ongoing struggle, an ongoing battle, and if youre one of the 'lucky' people to have some sort of thryoid disease, cancer, disfunction.... YOU'RE NOT ALONE!! I tell myself this everyday.  I have been dealing with this invisible illness now for 4 years, and will be for the rest of my life.

My point is, YOU are the only one who knows YOUR body!  Dont put all your trust into a Doctor just because he or she has gone through a lot of school... NO one is perfect and NO ONE cares about YOU like YOU do!  Always demand answers,  always ask questions!  Always DO YOUR RESEARCH!!  If your Doctor acts like he or she doesnt have time for you , its time to find a new doctor!!

Thanks for taking the time to read my story!!

Seja's Journey Part 2

I have learned a lot of hard lessons this past year or so. When you go through something like this, there is no room for pride. I tried. I tried to be that island. The one who could do it on her own. I learned really fast that I needed a support system. I learned to ask for help no matter how hard it was to do so. I learned that the people you least expect to come through, do. The ones you thought would, don’t.

The weeks prior to my RAI (Radioactive Iodine), I was taken off my thyroid replacement medication. A lot of people who have never been through this level of hypothyroidism, think they know what this level of exhaustion feels like. I can guarantee that they don’t. I remember my first appointment with my Endocronologist after my surgery and she said to me, “How are you feeling?” I replied, “Ah, ok for just having surgery.” She shuffled some paper and said “Well, that was the easy part.” I laughed and kind of blew her off. I have to say that she was so right. My surgery was the easy part.

At this time, I had a 6 month old and a 23 month old. So, I knew what exhausted was. However, when I stopped the meds, reality soon set in. The days became progressively worse. It started small. Dishes and laundry didn’t get done. Dinners didn’t get made. Showering became work and I all but lost the ability to get out of bed. Literally. One day I got up, fed the girls and sat on my couch while the girls were playing in the living room and I could barely keep my eyes open. I was sitting there with my mouth hanging open. Literally. This is the lethargic that I speak of. It was the first of many times that I swallowed my pride and asked for help. I picked my phone up and called my Dad. I told him that I couldn’t go on. I needed him and his girlfriend to come and watch the girls while I took a nap. NOW. I was worried that I couldn’t take care of my children. My reaction time was so slow. I worried daily if I was capable of being alone with them. Naps became a necessity to get through the day. I’m not talking cat naps. Im talking 2-3 hour naps, waking up tired and forcing myself to make it through the rest of the day. If it wasn’t for my girls, I don’t know how I would have gotten through this year. They were the only reason to get out of bed. The only reason to keep going. I could have so easily pulled that blanket up over my head and stayed there.

The day came to take my RAI. I hugged my girls tight and kissed my husband goodbye and drove off. I sobbed all the way to the hospital to swallow my pill on January 10, 2012. It wasn’t because of the pill itself, it was the fact that I wouldn’t be able to touch my girls or my husband for a week. I went into radiology and signed my release. The radiologist oncologist was there with me to answer any questions that I might have. I didn’t have any. I swallowed and drove back to my neighbors house. They live kiddie corner from my house and the room that I would be staying in stared right at my home. My neighbors, who are now dear friends of mine, made me feel so at home. My digs were pretty sweet. I suffered from terrible brain fog and my memory has never fully recovered. I used to have a great memory, like a steel trap. Now, I am forgetful. I need to write things down. I ask the same question a couple of times. I sometimes forget where I am going while I am in the car. During isolation, I packed books to read. That was the one plus of this “vacation” as most think that it is. However, I couldn’t read anything. I would find myself rereading every sentence, unable to retain any of it. I couldn’t follow movies either. I ended up watching mindless television and not really paying attention to it. It was just background noise.

I spent the week crying, sleeping, having long and meaningful conversations with my Neighbors/friends, face timing with my girls and talking with my counselor via telephone. There were times that I didn’t want to speak with anyone for anything.

I got to leave isolation and go straight to the hospital for my full body scan before I could go home and see my girls. The radiologist saw alot of radioactive uptake in my bowels and wanted me to do a bowel prep, like you would for a Colonoscopy, to make sure that it wasn’t a malignancy. I went home and prepped my bowels in tears. I just wanted to be left alone. I went back in the morning and thankfully the uptake had passed. I came home to 2 little pairs of arms wrapped around my neck. The best feeling ever. My high was short lived.

I had some side effects from the RAI. I had a bit of nausea. I lost my sense of taste for about 3 months. The radiation had destroyed my taste buds. Some salivary gland swelling and soreness. I lost a lot of hair, not shaving my head type of loss. However, I could stand in the shower and feel clumps of my hair sliding down my legs. Thankfully, I was blessed with thick hair. None of those effects matched the struggle with exhaustion, weight gain, and debilitating depression that have consumed me this past year.

I was just starting my meds again and it was a slow build up. I still wasn’t at the level I should be and every 6-8 weeks was raised by 25mcg. January 2012 to September of 2012 was filled with doctors visits and a lot of blood draws. I was still gaining weight. I have gained a total of 50lbs. since my surgery. I needed to hire a babysitter to help me out. She came in and helped 2 days a week. It was money well spent and I could rest and know the girls were taken care of. The months seemed to pass in a blur. August came and the Oncologist wanted me to come in for my 6 month check. He wanted to do some blood work first and not go straight to the scan because I was still struggling without the proper level of thyroid replacement. He called the next day to inform me that my markers were elevated and that I would need to do the scan. I stopped my meds the next day. My journey back into lethargy had begun.

The day of my scan had come and off to the hospital I went. The tech had informed me that he didn’t see anything and I went home overjoyed. The next day I was standing in my kitchen talking with my friend when the Oncologist called. He called to tell me that the radiologist had seen some tissue in my neck and I would need to be dosed with RAI again. We scheduled it for a week out and I stayed on my low iodine diet. I made arrangements with my friends to come back and stay for another week and for people to come in and help Steven take care of the girls.

I was dosed again on October 2, 2012. This time around I was prepared for what to expect. I cried when I left my girls. I couldn’t stand to leave them AGAIN. My littlest one was aware of my absence this time and my oldest didn’t understand why Mommy was leaving. I drove off, sobbing. I went to the hospital and then back to my friends home. I was tired. I was horribly sad. I was overwhelmed with feelings of guilt, inadequacy, and I was tired of being a burden. I won’t know if the RAI worked until March 2013, when I go in for my check. I am hoping for an all clear.

There are some things that Cancer did in fact take from me. It took my ability to continue to breastfeed my daughter. I had a hard time dealing with that and the guilt that came along with having to stop. Cancer took the first year of my daughters life from me. I can’t remember when she got her teeth, crawled, walked, talked. I was in a fog. It kills me to even put that in writing and throw that out into the world. How horrible. How could I not remember? I just can’t. I love my children more than life itself and my baby grew up and I missed it. It took its toll on my marriage. It has tried our bond.  My husband has stood by my side when I couldn’t stand to be present emotionally. He held my hand when all I wanted to do was to run away. He continues to support me. He has helped me write this and put this out there for the world to see. Writing this is like baring your soul. I’m good at putting on the brave face as I am falling apart. I know most of my friends were aware of my illness but not really aware of the toll it took on me and my family.

I hope that I have shed some light on the harsh realities of Thyroid Cancer. It isn’t the “easy” Cancer. NO Cancer is easy. I have an invisible illness that effects me daily. Some days are good and some days are bad. Some days I can rearrange furniture and the next I can barely cook a meal. I am the heaviest that I have ever been in my life. The last week of my low iodine diet, I gained 5lbs. Anyone who knows what a low iodine diet consists of knows that it is a far cry from a feast and I managed to gain weight. I am a big girl but I have struggled with my new larger frame. However, this larger frame is here to tell you my story. It is the frame of a fighter and a survivor. I am learning to love myself again and to embrace these new curves. I am learning to be less critical of myself as a person and mostly, as a mother.

My name is Seja, and this is my story.

Seja's Journey Part 1

This week is the begining of a two part entry from someone I am so lucky to call my friend. When my day is rough, she is there to pick me up even if her day is just as bad. Her journey with thyroid cancer has been a rough one, but she came out swinging and is still here with us today to share her story. Make sure to come back next week for the second part of Seja's journey.

My name is Seja and this is my story...

I remember it like it was yesterday, it was July 10, 2011 to be exact. It was hot and I had just gotten out of the shower which was a lot of work considering that I was due to have my second daughter on the 17th of that month. I started to apply my makeup like I would any other day and..WHAT was that? I looked again and sure enough there was a large lump that moved with every swallow. Up and down like a deformed adams apple. I went on with my day and dealt with typical late stage pregnancy symptoms, exhaustion, swelling, leg pain, etc. 3 days later I was induced. I was in labor when I asked my OB to take a feel and tell me what he thought. He thought it was my thyroid or a lymph node. He told me to worry about having a baby right now. However, coming from a family that has been riddled with cancer of ever type, the most recent was that my dad had just been diagnosed with prostate cancer and losing my mom suddenly to liver caner in '07, I was sure of my demise. I tried to forget about it and the contractions surely helped with that. My daughter was born healthy and no complications, I was blessed. So, my OB returned to check me out and I talked to him about it again. He assured me that it could be pregnancy related but if by the time of my 6 week check up it was still there that he would refer me to someone. I remember making a joke about when I returned to his office in 6 weeks I wouldnt care about my lady parts because I would have a huge goiter. We laughed and I took home my baby girl.

In the next couple of weeks, as most of you mothers know, I was in a fog of round the clock breastfeeding and diaper changing. I had a colicy one and spent my days and nights swayinng and bouncing and anything to catch a few minute of sleep. So, finally in a clear moment I scheduled an appointment with my regular doctor. He felt it and said the same thing. Lymphnode or thyroid. I was scheduled for an ultrasound. My husband went with me to that ultrasound appointment and sat in the room with me. The tech told me that I had an "ugly thyroid." They found 4 nodules all measuring over 3cm. The radiologist came in and assured me that nothing looked serious and that it was probably benign. I remember Steven making him tell me that again. The radiologist turned to me and said "benign." I left feeling relieved. My Dr. called me the next day with a name of an endocronologist.

I called and went in. The 1st thing out of her mouth was "Whats the deal with your weight?" I was in shock. Now, I'm a large girl but I was only about 6 weeks postpartum and I had dropped all my babyweight and then some and was feeling pretty good about myself. Anyway, she asks me if I have fatigue, hair loss, etc. I laughed and said "Hell yeah, I just had a baby." I wasnot her biggest fan and she didn't really seem interested in anything that I had to say. Although, I had chalked all my symptoms up to pregnancy. She tells me about the uptake scan and then a biopsy. I left feeling FAT and defeated. So, the hospital called to schedule and I found out that I would have to stop breastfeeding to do the scan so I opted to go straight to the biopsy. I just gave birth how bad could it be, right?!

I went in for my biopsy. They biopsied all 4 nodules. For some time previously, I had some trouble swallowing. Having to double swallow to get food down and in general. My throat never seemed clear. I had chalked it up to carrying a baby and everything being backed up. After the biopsy my thyroid was pretty pissed off and I realized that that was the very sensaton that I had been having. I called the endocronologist and they scheduled me for about 10 days out. I remember telling a good friend of mine that they scheduled me pretty far out and his exact response to me was, " You don't have to worry unless they call and move you up." About an hour later the phone rang and my Dr. had an opening the following Monday, could I come in. My heart stopped.

I was never really comfortable in my endos office. The secretaries were always eating and their cell phones were ringing and it was just not a very professional enviornment. I showed up to my appointment with my crew, my husband, my 18 month old and my newborn. The nurse took me into the room, did my vitals and walked out, leaving a sheet of paper face up and within reach. There it was, my biopsy results. I picked it up and read it. I set it down and turned to my husband and said, "I have cancer." I remember the look on his face. His deer in headlight eyes to be specific. He regained composure and calmly said "you read it wrong" So, I read it to him. My endo finally came into the room and told me that she got my results and I said "I have cancer" She proceeded to tell me, in her nonchalant way, what was going to happen. I needed surgery. Surgery? I have never had surgery. I live in a small town and I asked for a referral to a university in Chicago.

I went home. I dont remember much of the days that followed. It was surreal. I didn't know how to tell people. I didn't know how to wrap my brain around it myself. I remember having thoughts like... I don't have time for this. I have 2 little girls. I can't inconvenience people. I can put this off for awhile. I was in denial.

It sank in slowly. I didn't talk about it much. I didn't let it consume my thoughts. Except for one night. I was sitting in bed with Steven and it was brought up. This was the only time that I allowed some of those dark thoughts to creep in. I had been keeping them at bay for so long. I cried. I really sobbed, Why me? Why now? What will happen to the girls if I am not here? What about Steven? I cried myself to sleep.

I was referred to a surgeon out of Loyola in Chicago. He was a great surgeon, with a great reputation, and a thyroid master. People traveled across states to see him. He restored my faith in the medical community. From his receptionist to his nurses to him. They were all so wonderful. He was so gentle with examination and the way he answered my questions and the way he handled my husbands hard hitting questions when it came to his experience and plans. I went into surgery 3 weeks later on October 21, 2011. It was supposed to be 3 hours and ended up being 5. I woke up. I woke up sore with a drain coming out of my neck. I was groggy for a bit but came to fairly quickly. I saw my surgeon who told me that it was pretty messy in there. I had more than just the 4 nodules that were on the ultrasound. He took lymphnodes all the way down into my chest. They discoved that I also had Hashimotos. He rubbed my arm and told me that he would see my in a week. They took my stitches and drain out the following evening. I was a little nervous with them taking my stitches out that quickly. I went home and continued to sleep sitting up for a week. My husband was wonderful. I couldn't lift anything. So, I had to have people with me at all times to lift the girls. I lost my ability to project my voice or to sing. I couldn't make silly voices or anything. I slowly regained those abilities over the next 3-4 months. It was hard.

My follow up with the surgeon was 10 days later. The bright side was that I got released to sleep laying down, I could take all my steri strips off, and I could shower without my cling wrap scarf. However, the pathology was in. My lymph nodes were cancerous as well and I needed RAI (Radioactive Iodine) ablation. My first shower with nothing on my neck was a little nerve wracking. I remember thinking that when I lean my head back to wet my hair that my head was going to fall off. I couldn't help bringing the scene from Beetlejuice into my mind. The one with the lady who has a slit throat and when she smokes the smoke comes out of the slit in her neck. Anyway, I digress.

I made my appointment with the radiologist oncologist. Oncologist? It hit me, again. I have cancer.

His office was wonderful. His staff treated me with the same compassion as the patients with advanced stage cancers. They treated me no less. We scheduled my RAI for after the holidays. He warned me that I would be pretty miserable and that he didn't want to do that to me through the holidays. I agreed. I swallowed my pill on January 10, 2012.

I stayed with my neighbors who are very dear friends. They had the perfect set up for someone who is radiating. I didn't have to uproot the girls but I did have to leave them. This was the hardest part of my journey and the year that has followed.