Check up

Well, it’s been 5 years since I was originally diagnosed and today I went in for another check up. Today’s check up was with a brand new doctor whom I’ve never met or seen before since my original endo moved out of state and his dad (who held a practice with him) has gone into semi-retirement. Knowing that, I decided to start with the new doc before I was forced to that way I could see if I liked her and if I needed to find someone else. She’s young and reads all the current literature and made sure to give me a little bit of insight into why she’s doing some of the things she’s doing. Apparently my old doc kept great notes (thanks Dr H, that makes things a bit easier). So, previously my bloodwork was coming back positive for thyrogen antibodies which is the primary marker for if the cancer is gone or not. Because of them being present and positive, they couldn’t really tell what was going on. Well, today’s good news, those antibodies are now negative. Apparently they can return and the rate they show up as is 0.6…as long as they stay below 1 I’m in good hands. If they go above 1, I have to go for another full body scan, which means more I131 (but at a low dose). As for now, my levothyroxine meds have been raised SLIGHTLY. I was taking 200mcg six days a week and 175mcg on Saturday…I am now taking 200mcg every day. Nice slow increase so as not to wind up like I did before dizzy and unable to function because my levels were so outta whack. I like the new doc, doesn’t hurt that she had good news to give me lol. While the cancer can come back, currently everything looks great. Six months before my next appointment. I’ll have to get more bloodwork and a neck ultrasound, but telling me I can wait 6 months to see them again is awesome news. That means that everything is looking great!

My last final is tomorrow and then maybe I can get back to finishing my story for those who are still following and still interested. Thank you for sticking with me. I tend to write these later at night…guess I can’t sleep and what better way to pass time than to fill in friends and followers.

Goodnight and sweet dreams friends and again thank you for following me.

One Year Later

I realized tonight that it has been a year since my last post.  Bad Jamie. I honestly had every intention on posting much more often. I did graduate from community college with my Associates in Psychology. I graduated with honors as a member of the psychology fraternity, Psi Beta and a permanent Dean’s List certificate. That was all quite neat and unexpected even though I had worked so hard for it. I started Rutgers last fall and am finishing my second semester there. I have about 3 more semesters to go before I get my Bachelors, possibly longer if I don’t take summer classes. It’s been a process.

I’ve been dealing with anxiety and panic attacks ever since I was diagnosed and last year I was seeing a psychologist for a while which did help a little but I had a really bad episode last summer. I was driving down to visit my mom in Virginia and 2 hours into the drive had 3 panic attacks in succession. Medicine wasn’t helping and I couldn’t take any more of it because I still had 6 hours to drive and it would make me entirely too sleepy to safely make it, so I turned around and went home after sitting in a parking lot for 2 hours trying to calm down. That was my turning point. I needed to become more active in dealing with my anxiety, so I decided to go see a psychiatrist to find out what we could do about my medications. She changed one of them and I was panic attack free until last Sunday. I still had a little anxiety from time to time but hadn’t had a full blown panic attack in a very long time. My psychiatrist thinks it has something to do with my thyroid issue.

In order to prevent the cancer from recurring, my endocrinologist put me on a higher dose of Levothyroxine (my thyroid replacement medication). This higher dose keeps my TSH (thyroid hormone) hyperactive. When all of this started 15/16 years ago I was hypoactive. For those of you unaware, hypoactive thyroid can lead to weight gain, depression, and about a million other side effects. Hyperactive thyroid levels can potentially have the opposite affects. My original endo said there was no connection between my thyroid levels being hyperactive and my anxiety…my psychiatrist, and my own research, says otherwise. I go back to both doctors next month for regular check ups and screenings but I fully intend on having this conversation with them again. My endo who diagnosed my cancer has moved out of state and his father is going to be retiring soon so I’m starting all over with a new doctor in their office next month. I’m kinda nervous. It’s like going on a blind date, you hope for the best and expect the worse. I really do not want to go through finding a new endo and having to review all of my files and medical history with them. At least this one is in the same office as my previous physicians.

Wish me luck.

So on another note, finals are quickly approaching and I REALLY do intend to finish getting my story out there I just have to be more committed. For those of you who have stuck with me through my blogging journey, thank you. If I have any new followers, welcome and I hope to be a little bit more reliable on my blogging once finals are over. I’ve got about a month left in this semester.I also have 4 papers due in the next 3 weeks so I probably won’t post another blog until afterwards unless I get the late night bug again which prompts me to continue like it did tonight.

Again, thank you for sticking with me and for being interested in my journey.

Apologies and a little about my current life :)

My apologies for not keeping up on this as much as I had hoped.  School is kinda kicking my butt this semester. I graduate in May and am moving on to Rutgers University in the fall. I am majoring in Psychology with the hopes to be a child psychologist some day. After Rutgers I will either continue there for my Masters or, hopefully, move on to University of Virginia for both Masters and Doctorate. My decision to go back to school was actually a byproduct of my cancer.

Graduation from Camden County College (a local community college) is set for May 17, and I will try to write another blog in the meantime but I cannot promise I will be able to until this semester is over. After reading my last blog over again, I feel I did not give it the time that I had given my previous ones and, for those of you following me, I do not wish to give you a half-hearted attempt. Starting this blog has been helpful and healing to me and I really want to give it the attention it deserves. I hope you will stick with me while my blogs are not as scheduled as I would like them to be. 

The Surgery

Surgery day came. I was so nervous but I was ready. I wanted the cancer out. I wanted it gone. It was no longer welcome in my body. My husband and I went to Build-A-Bear and built Bella. She’s a pink bear with white hearts. I wanted something with me in the hospital and yes, even at 31, I still sleep with a stuffed animal. I knew I had a lot of support from family. I went in to get prepped. I hate needles SO much. Which is kind of funny since I’ve had so many through this process. They asked me if I wanted the area numbed before they put the IV in and told me it entailed more needles. I politely declined because more needles consisted of like 3 plus the IV. However, every time they went to put the IV in, I moved. I swear I tried to stay still. I just couldn’t. So the anesthesiologist came back and had to numb the area and hold my arm so they other person could get the needle in. The other person was a very nice resident who also wasn’t bad on the eyes (Hey I’ll take what positives I could get from this experience). My surgeon was there making jokes and I laughed a few times. My nurse introduced herself and the last thing I remembered before I went out was the bright lights in the surgery room.  Little did I know, that was the easy part.

I don’t remember waking up in the recovery room, but I’m pretty sure I did at some point. The next thing I remember was being back in my room. My endocrinologist’s father (who has a practice with him) came in to greet me and tell me what happened. I couldn’t talk. Heck, I could barely sit up. 11 lymph nodes were infected and removed from my neck because the cancer had started to spread and they had to do a total thyroidectomy instead of a partial. Looking back, I’m actually really happy about that call because from the research I’ve done the chances of recurrence is higher when they only do a partial. I had a nebulizer mask on which was spraying a cool mist over my mouth so that my throat didn’t get too dry and hurt worse than it did already. Thankfully, my mom was there and she had taught me to sign the alphabet so I was able to do a little communication when I was too uncomfortable. The water kept getting trapped in the tubing coming to the mask so I was frequently being blasted with large sprays of water to my face, which now is kinda comedic to me but then was completely annoying. My mom got the nurse, who I will say was LESS than pleasant. I don’t know if she was actually a really big lady or if I made that up in my post-op brain because I swear I remember her being like 6 feet tall and broad shouldered like a football player. But anyway, she came in, grabbed the mask and then let it snap back telling my mom there wasn’t an issue. Now, I know not everyone will experience something like this because it really was a matter of hospitality but her lack of friendliness made my experience a lot more scary. My mom went and complained to the nurse in charge explaining that she would like the nurse to be more gentle because the mask actually hit right above my incision which really hurt. The nurse came back into my room, looked my mom point blank in the face and told her that no matter how much my  mother complained she would remain my nurse and then walked out. So now I was nervous. Again, looking back I see it a little differently and perhaps she was just having a bad day. I hold no ill will towards her. Then the next thing occurred. My husband wanted to stay the night in the hospital with me…well apparently Nurse Giant had other ideas. She came back with a security guard and told my family that visiting hours were over and they had to leave. Needless to say this freaked me out even more. So she had my family escorted out of the room and I was left alone. I hadn’t anticipated that. Meanwhile my neighbors family was allowed to stay and say goodbye. The next morning when my family returned, so did the Head of the Hospital to apologize and … this cracks me up … she apologized by telling me I could have all the ice cream I wanted. I think she lost sight of my age because of Bella. However, I was allowed to go home that day.

This is where my real battle began. Everything up to this point was a cakewalk. Emotional, yes but in comparison so much more easy than the next 3 months.

The next step

My attempt is to write a blog a week, but as we all know, life does not always allow us to keep schedules that we planned. The past week was full of triumphs and crappy days so this blog is a little late. I apologize for those of you who are following me.

 

My wedding was about 6 weeks away when I was first diagnosed. I know it was selfish but I asked the doctor if the cancer could wait for me or if it was something that needed to be taken care of right away because so much had gone into planning and we were doing everything ourselves with the help of family. My doctor told me that because of how slowly developing thyroid cancer was, there was no need to do anything immediately and we could schedule the surgery for after my honeymoon. Hooray for small victories. I didn’t want the scar in my pictures and I didn’t want to postpone. I had my appointment set up with my surgeon (who was Absolutely AMAZING) and upon going to see him was told that I had the “lottery” of cancer. This is a phrase that I began to hate! I asked him to explain. He said he had done so many thyroidectomy surgeries in his career and had seen many cancer patients. He gave me the following scenario:  Fill an auditorium full of people and tell them they MUST choose a cancer, what cancer would they choose. Majority, if not all, would say thyroid cancer. My response to him was this…Dr. L, I would NOT choose a cancer. I would get up and walk out of the door and tell them they could keep their lottery, I didn’t want to play.

My wedding came and went and we honeymooned in Washington State. While we were there, we spent a lot of time outdoors. We spent a couple of days sleeping in the cabin behind my aunt’s house. It was during one of these days that I met someone who changed my perspective. My aunt’s friend had stopped in unexpectedly, he wasn’t due for a few more days or weeks and honestly, I think it was a meeting that was meant to happen. You see, her friend had a cancerous tumor in his cheek but chose not to go with traditional chemo and instead was taking trips to Sweden regularly for mistletoe injections (which is a natural form of chemo) and it was working. We sat around eating breakfast and discussing parallels and differences between our cancers, and I do not think I have ever met a more kind and open soul. I admitted how afraid I was, and I can’t tell you what he said because I honestly don’t remember, but every word that he spoke comforted me. I was determined to live my life. (on a side note, sadly he passed away about a year or less after my meeting him but I have thought of him MANY times during this journey)

Coming back home was bittersweet. I wish I could have stayed in Washington forever, but I had to face reality. My surgery was pending and I got the time I asked for so now it was time for me to take care of myself and deal with the cancer I kept trying to forget.

 

 

 

Again, thank you all for coming on this journey with me. I am writing in small chunks because this is not an easy process for me. So I am taking it step by step, emotion by emotion and laying out my journey slowly. And in truth, that’s how all of this happened. Slowly. There was nothing quick about my journey, a journey that I will have to be on for the rest of my life.

How it all began. . .

I have never written a blog before. I never even thought I was interested in it. However, today I did a lot of thinking about the journey I’ve been on for the last 13, almost 14, years and how I have not really dealt with my cancer emotionally. Not really. I still am in denial about all that happened and even feel guilty when I say “I am a Cancer Survivor”. I shouldn’t feel guilty! This should be a badge of honor, not of guilt. So I did some searching online hoping to find some kindred spirit that might feel the way I feel and I found nothing. That’s when I came up with this blog idea. I want to put my story out there and let other Thyroid Cancer Survivors, or ANY Cancer Survivor for that matter, know that they are NOT alone. I want to tell my story and hope that I can touch someone else’s life and maybe, just maybe, that person won’t have to feel the way I do right now. Denial and guilt over something that I survived and had absolutely no control over if I got it or not. So, this is my very first blog and the beginning of my journey. I hope that you enjoy it and are possibly inspired by it. Thank you for taking the time to read it and join this journey with me.

When I was 18, my GYN discovered a lump in my throat. I never even knew it was there. I was referred to an endocrinologist and my journey began.

They did ultrasounds and fine needle aspirations (Where they stick a very long needle into the lump in my throat and forced me to swallow while the needle was in so that it would push fluid towards the needle). For 8 years everything was fine.

I got engaged, moved, started a new job. Life was good. Then I went for a checkup with a new endocrinologist. He did the fine needle aspiration for the third time, along with an ultrasound. I had been through this so many times already, I went alone to get my results. I thought nothing of it. That’s when my doctor sat down with me and told me that I had cancer. I know I asked questions. I don’t know what questions, and I surely don’t remember anything else from our conversation that day. I felt like I was having an out-of-body experience. I was in shock. I remember getting in my car and calling my mom and that’s when I broke. Crying and telling her what they told me and then putting myself back together and going into work. When I talked to my fiance (now husband) that night he had so many questions. That’s when I realized I hadn’t heard a single thing the doctor said after “cancer”. I called his office and he set up an appointment for me the next day, his very last appointment of the day. He didn’t even charge me for it. Not that his fee was my biggest concern, but sometimes it’s the little things that make a difference. And that, is how this journey started.