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Pivotal moment, achieved.

10 Jan

I’ve made a BIG decision.  I’ve decided to finally have my thyroid removed.  I’d considered it a year ago, but somehow just backed off from actually taking steps toward surgery.  I am still scared, but somehow I keep taking steps.  I’ve spoken to work about it and most recently, I sent this letter out to friends, family, and otherwise important people in my process:

Hello All.  Some of you are very close to me, some are friends with whom I’ve kept in scarce touch but hold dear, others still are people I may have never met in person, but either share the thyroid/autoimmune burden with you or have simply shared with you the story of my own.  Wherever you fit into this spectrum of people, you all have had an impact on me even if it’s simply that I think you are an awesome person with a great sense of humor (Kim) and cared to include you in my support network.  I hope you’ll read on and participate in whatever way suits you in this very big step that I’m about to take.

The short story is, I’ve been living with Graves’ Disease for nearly six years.  I’ve tried and tried to will myself into lasting remission and ultimate health, but I feel my DNA has stacked the odds against me and I’ve made a big decision regarding my treatment.  So far I’ve been able to get my thyroid hormone levels under control with Anti-thyroid meds, but my thyroid stimulating hormone is still non-existent.  I feel I’ve reached the end of this long battle and am ready for a different method of care.  I wish I could’ve had all the resources in the world available to me upon diagnosis so that maybe I could’ve done more in the early stages to get this monster to retreat, however that is not how things have played out.  I am finally ready, terrified, but ready to schedule the removal of my thyroid.
I won’t get into all the reasons why in this email.  If you’re interested, I’d be glad to share.  Ultimately, I had to wait until I was ready and that moment occurred a couple of weeks ago when for the first time, I experienced relief and a burden being lifted at the thought of total thyroidectomy.  Granted, this will render me unable to sustain life without medication for the rest of my life, but things are sort of that way as it is.  Were I to stop my meds, I’d just go in a different way.  I’m scared, but I’ve always been scared of this surgery.  The difference now is that I continue to take steps toward this surgery even though the gremlin in my brain is holding onto my thyroid with its heels dug in the sand.  I allow him to hold on, yet I still move forward.
I am in the beautiful state of Colorado currently, visiting my 8 month old niece with the cutest, chubbiest cheeks you’ve ever seen.  It is my intention when I return to Atlanta to make an appointment with Colin J. Weber – to schedule my surgery.  I don’t know how far out I’ll have to wait, but I’m hoping for the end of February.  This particular surgeon is Chief of Endocrine Surgery and personally emailed me back when I emailed him over a year ago asking for his stats.  He’s performed over 4,500 thyroid surgeries with 6 nerve injuries.  He performs about 275 thyroid surgeries per year.  You can read more about him here:  http://www.surgery.emory.edu/about-us/faculty_directory/faculty_profile_collin_weber.html
I am reaching out to all of you for support.  Some of you I may lean on heavily, others, I hope that you’ll keep me in your thoughts often and send me some positive thoughts or energy; whatever feels right to you.  Often when someone asks me for support, I ask them to define it for me, as different people find different things supportive.  Specifically to me, some examples of ways you can offer me support that I would find helpful include but are not limited to:
  • a phone call or text to let me know you’re thinking of me or wishing me well
  • sharing a story with me about someone you know who has had a positive experience with thyroid removal (this is a BIG one)
  • asking questions that might help you or someone you know who is struggling with thyroid disease (it’s common) – feeling helpful to others as a result of my own struggles is also very positive for me.
  • an email telling me about what is going on in your life or just a quick note, as long as it’s genuine, the subject matter is not important, it’s the connection.
  • anything specific to our relationship that you think may be helpful or supportive
  • sharing vegetables from your garden with me, perhaps over coffee (decaf for me)
  • anything involving connection and cultivating positive, calming energy.
  • a hilarious email about the minutia of life (Kim, Milana, Jimi)
I’m sure you get the idea….
So, I’ll leave it there and hope that many of you will show up along the way in this journey that I ultimately have to take on my own.
I plan to provide details of my experience in two places.  On Daily Strength, where you may have to create an account to follow my posts:
  • If you’re interested on connecting with me on daily strength, please reply and let me know and I’ll send you an invitation to make it as easy for you as possible.
Also, I hope to be posting here:
a blog that I’ve neglected quite a bit, but hope to revive as quantitative details provide a platform on which to contemplate, expand, and share my experiences, thoughts, emotions, etc. with others in the hopes of making meaningful connections that help to heal and also to hopefully serve as a positive example in the thicket of horror stories that are out there on the internetz.
Thank you for reading all or part of this, or even opening the email and scanning it…   when you feel like it, I hope you’ll reach back.
Love & Laughter,
Kat
Of course I am inclined to avoid the dismantling of my body, but the truth is, it’s already made the choice for me.  For a long time, the better choice for me was to keep the gland and take poison medication to control the condition and the dangerous roller coaster ride of symptoms that would eventually kill me if not for pharmaceutical intervention.  There are several logical factors that led to this decision, but ultimately it just had to be that mental shift that cannot be forced.
Anytime I have faced a decision to let go of something that’s been a big part of my life – usually a relationship – I’ve spent a long time making sure I was absolutely sure because I aside from difficulty in letting go of people, emotions, ideals, etc. without a mental struggle; I rarely look back once I’ve come to a decision and look to avoid regret.  I think that method will serve me well in this instance.
One of the things I had to let go of in this process was an idea.  For a long time, I clung to the idea that an act so severe as the removal of one’s thyroid should not be based on such superficial platforms as cosmetic appearance or financial resources.  However, I am comfortable with the fact that those are my two main motivating factors in this decision.  I only accepted that after my brain shifted.  My logical reasons are as follows:
  • cosmetic:  plain and simple, I’d rather have a scar than a goiter.
  • financial:  it’s just realistic.  I have to get my labs done every 8 weeks and see the Endocrinologist (who is lenient with me regarding appointments) every other time I have my labs done.  With my current insurance, my lab work is covered.  I receive 6 office visits per year at a $40 co-pay, and my deductible is $10,000.  Like everyone else, my premium saw a dramatic increase in price and I am now paying just under $300/month for this skimpy coverage.
  • also financial:  other insurance plans I’ve looked into would not exclude me with a pre-existing condition, however the labs would only be covered up to $400/year, leaving me with the rest to pay out of pocket.  The deductible would be $3500 with $60 specialist visits.  If I only had to get my labs done once or twice a year once I find a dose that’s somewhat stable, it’s a more sustainable way to receive care.
  • risk of thyroid storm:  under my current method of care, as long as I still have my thyroid, I’m at risk for thyroid storm.  This is fatal unless immediate medical attention is received, which is the main reason I get nervous on airplanes and certain other situations in which it would be difficult to get immediate medical care.
  • cardiovascular risk: with the inevitable fluctuation of my thyroid levels – when they’ve gone up, I have experienced arrhythmia and anxiety.  As a person gets older, this is much more dangerous, as does surgery.
  • athletics & muscle wasting:  with each rise in levels, I lose more muscle tissue and it has become more and more difficult to rebuild that muscle.  I’m hoping that I can find some balance that will allow me to pursue the activities I love for the rest of my life without having to start from the beginning again.
  • weight:  ironically, one of the reasons I was scared of the surgery is the stories of dramatic weight gain.  However, I have experienced weight, specifically stomach fat gain that appears virtually overnight once I start on a higher dose of medication.  People say it’s age related, but that’s the last place I put fat on and belly fat actually functions as an endocrine organ!  So I’m hoping some long term regulation will allow me freedom from the fluctuating appetite and fat distribution that seem to be a direct result of thyroid disease.

I suppose I could go on, but those seem to be enough for me now and I feel pretty good about this decision.  I feel like I’ll have some relief.  I think connecting to people who have positive stories over a year out from surgery have really helped.  One woman, the main story I’m clinging to, is a year older than me, lost her methimazole weight and is now 7 months pregnant.  (methimazole is the medication I am on and is known as an ATD antithyroid med).

Please feel free to comment with words of support or questions if you or someone you love is living with thyroid disease.

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5 responses to “Pivotal moment, achieved.

  1. Professor

    January 10, 2012 at 8:52 pm

    While I am viewing a surgery as a last resort, the patient makes the final decision. We recently read few stories about the people who developed complications (thyroid nodules) later in life as a result of I-131 treatment ffor grave’s disease in their twenties.

     
  2. Sharon

    January 13, 2012 at 6:22 pm

    Hey There- Came here by way of email forwarded by my pals Bonnie and Sally who live in NM. I had my thyroid out in 1984. I was 25 years old. I have medullary thyroid cancer. I have lived a productive, active and interesting life without my own thyroid. I am in the final stages of cancer as it has spread to my liver, bones and lungs and still I am great.I just turned 53 this week! It requires diligent care. Keeping my life manageable. Getting regular and abundant rest. I do take thyroid medication and have since it’s removal. Luckily I have not had to have many adjustments to dosage. My mainstay is a good organic plant based diet and regular acupuncture (every 2-3 weeks). Yoga and massage are also a regular part of my self care.
    SO here are some suggestions post op that can be very helpful….
    – Have someone give you nice gentle massage as soon as you can. You want to move the anesthesia and surgery drugs out of your body quickly and gently. I did this and it was remarkable.
    – drink plenty of fresh clean water after surgery.
    – Keep your throat and chest open…. I have a hunch and neck pain from caving in to protect my throat area..to be blunt your throat is slit to get to the thyroid (if they still do it this way) and I had it done twice as they did a partial first. Still working on opening and stretching this area. Massage and yoga is very helpful. I had no clue when I was 25!
    Our situations are different but living without a thyroid is about the same. My partners niece was born without a thyroid and has to take thyroid meds from birth. She is a thriving college junior.
    Perhaps there is a way you can bless your thyroid and give thanks for how it has sustained and supported you to this point. A good bye party, letter writing, art project, symbolic grave…
    Wishing you a successful and speedy recovery.
    Sharon- New Harbor, Maine

     
    • houffenglaarfert

      January 14, 2012 at 6:04 pm

      Thank you Sharon. Your story is helpful and I will take your suggestions to heart. I’ve gotten some good advice from TT post-ops recently, but mostly it’s been more pragmatic type of advice. I love your suggestions for massage, water, and keeping the throat and chest open. I don’t do that enough as it is. I hadn’t thought of performing some sort of ritual to say thank you and goodbye, but that is exactly what I need to do. I’m not sure what I will do, but just your mention of it has helped refine my perspective. I never wanted to move forward with surgery with the feeling of “get this thing out of me”. I want to send it off lovingly and my grieving has begun. I am sad to see it go and I wish things could’ve been different between us, but it’s time for me to move on and parting ways feels like the right thing to do. I’m sorry for my loss and I would like to honor it in some way. It’s also a victim and I don’t hate it anymore.

      Thank you so much for helping me to grasp this feeling. I think it’s the healthiest path to take.

      Love & Laughter,
      Kat

       
  3. Jen

    January 15, 2012 at 5:16 pm

    I wish you a very smooth surgery and recovery. It sounds like you really did your research on surgeons, which is great. I definitely understand the anxiety, but I think you will do great. I read a study a while back comparing outcomes of patients using the three different standard treatments for GD and the conclusion was that generally, patients were happy with the outcomes with any of them, as long as they were involved with the decision making. It doesn’t always feel lucky, but I suppose we are relatively fortunate to have three effective treatments for GD, as opposed to other autoimmune diseases that don’t have much of anything. I look forward to hearing about your experience, and while I’m still going the ATD route for now, it will be useful to hear what it’s like for you, in case I end up in the same boat in the future.

    Take care, and good luck!

    Jen

     
    • houffenglaarfert

      January 15, 2012 at 11:47 pm

      Thank you Jen. I agree, I am very lucky in certain ways, like choice in treatment and no eye symptoms (knock on wood…). I sort of knew there would be a time when I would choose surgery, but if I’d moved forward before I was truly ready, I would not have had the right mindset going in, which I believe will have a great impact on my recovery and the process itself. I am fortunate to have an Endocrinologist who was not usually pushy with me towards RAI/TT and that I am strong willed enough to make her back off when she was and I was not ready.

      Thank you for your words of support.

       

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