Tuesday, June 19, 2012

The beginning of a break-up

I woke up yesterday morning with fear.  I took my children to our neighborhood pool to distract myself from the fear.  I wanted to enjoy them and them to enjoy me before what I knew was coming later in the afternoon.  I came back home to get ready for my 1:30 p.m. appointment and fear set in while I showered.  My husband came in the bathroom and looked me in the eye as if willing me to keep going and be strong.

I got in the car and drove the 30 minutes to the best Endocrinologist I have met to date.  Dr. O. is a life saver, but his staff sucks.  I told him his staff sucked on my last visit and he told me he would fix the problem, but I knew the problem still existed.

I had a biopsy done in April and here it was June and I had never heard from his office.  I knew I should have called, but I was feeling so much better and I didn't want to hear any bad news, so I let the incompetence of his staff prolong my blissful ignorance.  No news is good news, right?  WRONG!

I heard the doctor in the hall asking to speak to his head nurse.  The walls are thin, so I heard everything he said to her.  He told her that it was unacceptable, that not only had I not been given my results, but that the results were not even in the office.  They (his staff) didn't even have the pathology report for the doctor to review.  In their defense, Dr. O. is not apart of the network here, so his computer system does not communicate with the hospitals that do the testing.  All of the labs and paper work must be sent to him in a hard copy and the hospitals neglect to do that sometimes, but according to Dr. O., that is not an excuse for not even having the results in the office on the day of my appointment.  He's right and after reprimanding his staff, he came in to greet me and apologized for the situation.

While we were discussing "normal" thyroid business, the nurse came in with the pathology report and the doctor, even more visibly upset, looks at me in my eyes and says, "your pathology report has not changed Mrs. H.  It (the nodule on my thyroid) is not benign. There is a presence of follicular carcinoma.  My advice is still the same as when you came to me for your second opinion from the other doctor.  We should remove part of the thyroid that contains the nodule and if we find cancer, a total thyroidectomy will be done".  I interrupt him at this point because I wasn't sure if he just told me that I had thyroid cancer.  Our dialogue was as follows:

Me:  Are you telling me I have thyroid cancer?

Dr. O:  The pathologist cannot rule out malignancy, but the cells within the nodule are not benign.

Me:  Wait, so what does that mean exactly, because my first endocrinologist said to me that the report basically meant that I didn't have cancer.

Dr. O: (with a grimace) Mrs. H., if you were my wife, I would tell you to remove this nodule immediately.  Your previous doctor wanted to monitor it and take the chance that it was not cancerous. You are young, you have very young children, and I don't want to risk this being something serious.  It has not shrunk nor will it ever shrink because it is not a goiter (my first doctor told me thyroid medication would make it shrink).  The only way to rule out thyroid cancer is to remove the part of your thyroid that has the nodule and dissect it to see if it is in fact cancer.  Carcinoma is cancer. Please remember, Mrs. H. that there are other nodules in your thyroid that are too small to test. You need to consider surgery.

Me:  Okay, let's take it out.

I must express that I am not easily moved with emotion.  After this appointment, I went to see a friend in the park very close to the endocrinologist' office.  I was a ball of emotion, but I know she was not able to tell.  When I got home, my husband knew something was wrong because I was silent.  I don't like breaking down and any talking was liable to make the waterworks happen.  Of course, him knowing me,found a project for us to do.  I had mentioned to him the previous day that the vibe in my daughter's room was off and we needed to rearrange her furniture (why, yes, I am one of THOSE people), so that's what we did while I explained my doctor's appointment to him.  I must say, it is awesome to share your life with someone who knows you and doesn't press you to be something you are not.  Anyway, he's not a talker either, but later on in the night he got quite angry.  He wanted to make a complaint about the delay in receiving my results and said that with the economy being as bad as it is, "you would think people would do their damn job". Poor thing, he has no one to blame for this, but the nurses and although he has a point, I believe things happen as they are meant to happen.

I am truly scared. I need a moment to process a few things. The biggest issue is that I have to wait for my insurance to approve that I actually need surgery and that upsets me a bit.  I can't process feeling like everyone else does and it takes me a few days.  I guess I feel betrayed by my body. I was under the impression that I was rounding the corner on this journey and could visibly see the finish line, but now I have to buy some new shoes and keep going...

Monday, June 11, 2012

Have I become a stalker?

I spent most of my day today reading a blog.  I can't even imagine myself sitting still to read a very long book about someones life, let alone a blog, but I have spent the majority of my day reading and I feel better for it.

I came across this wonderful man's story because he was kind enough to follow my blog.  I was excited to see a 3rd follower and his name Hypo Man, let me know that he wasn't on my blog for the food tips, but was a fellow sufferer. I was expecting a blog of medical jargon, symptoms, and post of self-acceptance.  What I actually found was humor, honesty, and enlightenment.

His honesty touched me in ways that I can't express and I am forever thankful because I am not very honest most times about how I feel.  I don't often think that others care. I feel like they get tired of hearing me complain about how bad I feel.  When I am sick, I crawl into my cave (my home) and shut everyone out.  But, why?  Why am I unable to share my feelings?  Why do I sometimes resent those who have read my blog.  I started this blog to share and hopefully help someone who is suffering like me, but instead I have sugar-coated things and edited myself because I don't want to be seen as weak.

Maybe it's the Soldier in me that doesn't want to show weakness.  Maybe it's the hurt little girl inside of me that I am protecting.  Maybe fully accepting that this part of my life sucks is too hard to handle.  Whatever it is, I'm stopping it right now.  I will no longer hide how I feel and I will write for myself and others like me.

I am a married women, but I am in love with Hypo Man.  I am officially his number one fan.  I sincerely hope he gets the help he needs. No, I sincerely hope that he is listened to one of these days he goes in to see his doctors. He's suffered too long.  Does it make me a stalker if I care so much about him and I've never met him and have only seen him through one video?  I tell all of my friends that not many stars make my scream list.  (The scream list is for people I would actually scream for if I ever met them) My list consists of Beyonce(don't ask), Oprah, Nelson Mandela, and now Hypo Man.

My sincerest thanks to this man.

Also, why do any of us have to suffer.  Why is that so many of us have received inferior care? I firmly believe I have had thyroid issues since I was 9 years old.  The signs were there, but no one bother to do the testing and I just learned to live with symptoms until I got this lump on my thyroid.  When lumps/nodules start to pop up, that usually a sign that your body has been fighting for a while.  Why, if I am the 5th generation in my family to have a thyroid disease, didn't any doctor test my thyroid levels? Shouldn't that be standard procedure if I tell the doctor that my mother, grandmother, great-grandmother, and great-great grandmother (I just found this out) have had either Graves or Hypothyroid disease.  It's ridiculous!  If it sounds like crap to you too, then please visit the Patients with Thyroid Dysfunction Demand Better Care facebook page and sign  the petition, PLEASE!

Friday, June 8, 2012

Walks with my daughter

Hashimoto's has forced me to slow down and observe my life from a different standpoint than I use to before.  When I get sick, I am forced to become acquainted with my bed (I hate the word bedridden).  I don't let most people know that because I despise looks of sorrow or sympathy.  I hold that information to myself.  Recently, I've been having fainting spells.  I remember when they first started happening (another reason why I started to get serious about my health), it was on a Saturday and I had just walked up my stairs to pick out some clothes and the next thing I knew, I was on the ground staring at my husband's feet rushing towards me.  I wasn't scared, but when I looked at my husband's face I became terrified.  I could see fright in his eyes. When I push too hard when I feel ill, I find myself down on the ground, so to prevent that from happening I climb in the bed with my children. I let them watch movies on my laptop (we only have one television in our home by choice), and I am forced to lie there.  I can't play with them.  I am not the same mother I use to be before I got sick and there are times when it makes me very sad.

There is a benefit to having moments of being that ill.  It allows you to appreciate the moments when you are healthy. It allows you to be silly and let shit go.  It allows you to play dress-up instead of obsess over how clean your house is.  It allows you to pretend to be dinosaurs with your children instead of worrying if dinner will be on the table before your imaginary set time.  It allows me to take walks with my daughter.

My daughter has had to deal with so much change recently.  She got a new brother, a new school, and has had to learn to adjust to me being different.  She has done quite well, but has become more cautious and less talkative. I have been in her shoes.  I was much older, but it is terrifying to see a parent become so sick that they pass out right in front of you. My husband and I agreed that taking walks with her may allow her to open up and talk about things that bother her.  On those days, he cooks and watches our son while Olivia and I take a walk around the neighborhood.  She comes alive on those walks.  She runs ahead of me and is less cautious.  She tells me all about her day.  I ask her questions about her favorite things and things that make her scared or angry and she opens up.  I can talk to her about certain things that I would never think about with all the hustle and bustle of my house.  Recently, I told her how her father would never let me walk close to the street when we first met and how you can tell if a young man is a gentleman by the way he treats you.  It was very lighthearted, but these are the things I think she will keep with her forever. Good luck to the guy who dates her.

I have Hashimoto's to thank for slowing me down and getting to know my daughter.  I can't wait to start taking walks with my son.  I also can't wait until I get this thing all figured out and I don't have bad days anymore, but for now I'll cherish every good day that I have.