Another update

This is one of those postings that I have been wanting to write. I hate updating people on Facebook because there is not adequate time or space to really tell them what is happening. But to sit down and type it is tough.

Cancer has consumed me for three months. It has been what I wake up to... having to take a pill to not only replace the function of the part of my body I am forever missing but also to keep the cancer at bay until it can be surgically removed. I have to have those pills in my body first thing in the am. Then I have to wait 30 minutes to an hour to eat/drink anything- so that the pills absorb correctly.
When I have to lay down on the couch in the middle of the morning cause I am exhausted- I blame cancer. When I look at my children- I think of cancer. I think of the things/time/experience's that it can rob from me.

It is a weird thing. One moment I am totally overwhelmed. I cannot think of anything else. I cannot escape this incredible fear. Then I can flip to the fact that I have a long future.

Sure... my future includes surgeries. Radiation. Scans and blood tests ever few months. The thing about thyroid Cancer is that it is highly treatable. I will die from something else. What people do not talk about though- the quality of life for those diagnosed is usually poorer. I will forever be dependent on medication. I will struggle to find the right dose. And even with a good dose- may never again feel completely right. I will forever worry about it reoccurring.

Anyhow--- I must get onto what has been happening.

We arrived Oct 24.  I was at the doctors on the 25th and enrolled in Tricare. I was seeing my new doctor on the 26th. She put in the referrals that I need... Endocrinology, ENT and General Surgery. I had the approvals on the 29th of October.

I have an appointment tomorrow with ENT (November 20). I am not sure why I am seeing them but I will update you afterwards.

I saw the General Surgeon last week . He was a SUPER great guy. He listened to my story and within a few minutes basically said he is not comfortable performing this surgery. He said he would "grease the wheels for me." He left the room for a few minutes. When he came back- he told me he had contacted the best Head/Neck surgeon int he area... Dr. Joel Ernster. If you google him- he looks sorta like the Mad Hatter (lol). The funny thing is- I had asked my sister the day before for any recommendations. She was a surgical tech here in town at Penrose Hospital for a year. She told me the TOP choice would be Ernster. So how serendipitous that the next day- that is who I am referred to.

I cried. The thought of not getting something scheduled that day was heartbreaking. Yet when I heard the name of who he was sending me to- it was amazing. I then had to call my doctor on post AGAIN. I was on hold four times for a total of 25 minutes. Finally got ahold of someone and they put the referral in. I waited all weekend for the update on the Tricare website. Finally it appeared on the site today.

It was wrong. The doctor had put in the name of the referral but had classified it as General Surgery instead of specialist. So I was refereed to ANOTHER general surgeon. I lost it. I called 5 different people. Got the run around. At one point- after being frustrated from a  conversation with the patient advocate- I walked back inside the house and literally fell to the floor. I just sobbed. I buried my face in my hands and cried. My amazing husband came to my side and just held me. He let me cry and yell my frustrations out.

I finally got ahold of an amazing woman named Mary. She not only talked to me with care but she got on the case. She got it all straightened out. She even gave me the number to call her back with any issues- instead of me having to be sent through a bunch of channels which are maddening!

The referral was in the system a few hours later. I was able to call and get an appointment with the right doctor. He is out of the office the rest of the week due to Thanksgiving. But I have an appointment first thing next Monday morning at 8am!! YES!

Now the trick is- not spending the next 6 days obsessing over the size of the lymph node that I can feel on the right side of my neck. I am constantly feeling my neck to see if I can feel anymore. I know I am seeing the best surgeon around in a week and in a matter of weeks we can move along in this process.

It is crazy to me. I want to rush this process cause I want cancer out of my body asap. Yet with that process also brings an extremely scary surgery. A surgery that will leave me with a permanently scarred neck. A half moon shaped scar from ear to ear. Yet- it is worth it- to get some of this cancer out.  It won't be all gone. I still need a round of radiation a month after surgery. Hopefully that will do it!

The funny thing is... I have SOOO many questions. After this surgery- I need radiation. Who actually schedules that?? Is it my surgeon? Is it my PCM? My endocrinologist? I cannot even see my endo until the end of January.

On a side note- I dropped Lee off at the airport this afternoon. He is in Texas. Our civic is in Houston and we are waiting on customs to clear it. Hopefully it will be cleared tomorrow and he will go get it tomorrow or Wednesday. Finally we will have our own car back and no more rentals!! Hoping he will be back by Thanksgiving!!

Enough rambling tonight. I am tired and need to go to sleep. Early morning with the kiddos and an appointment on post.

On a side note- I finally have Scentsy burning in my house again- after nearly a month and a half without it! Woohoo!!