Tuesday, August 17, 2010

Choices, Choices...Vanity vs. Radioactive Breasts

I've been MIA, I know. It's been difficult for me to blog lately. Partially because of an overwhelmingly freakish writer's block that is now showing signs of lifting (it's not gone, though. It's taken me more than two weeks to construct this single post. Sentence by painful sentence), but also because honestly I prefer to write about real-life, day-to-day things and there are things that have been happening of which I cannot yet blog. Someday soon, perhaps, but not now. And that act of holding back, knowing I cannot share specific items of my life, just feeds the block.

But something happened this week three weeks ago of which I CAN write.

It's actually kind of a bummer.

I'll be having surgery in September.

I've been struggling with Graves Disease and hyperthyroidism for just over a year now. Symptoms showed up in force after my daughter was born, though I think I saw a ghost of them years before. Shaking. Sweating. Heart palpitations. And then with my newborn also came my low milk supply.

The endocrinologist put me on a medication called PTU. And I've felt better.


PTU has been known to cause liver damage, so it's not fabulous to be on long-term. And the alternative medication available doesn't work for my situation right now. So I can't stay on my current meds and I can't take the other one offered. And going off meds all together doesn't seem like a good idea, what with the heart palpitations, jitters, heat sensitivity, etc...  Adjusting my diet hasn't made much/any difference, it seems (I did try!). Sadness. And that leaves surgery.

There are two kinds of surgery being offered to me: the physical removal of the thyroid (thyroidectomy) and the killing of the thyroid (using radioactive iodine) whilst leaving it in my body.

The radioactive iodine was most recently the only treatment that my endocrinologist mentioned; however,  you cannot be breastfeeding if you get the radioactive treatment. That was enough for me to refuse the treatment when it was first mentioned and it remains a primary reason I've decided it's not for me at all. True, I'm not nursing very much any more, but our bed- and morning time routines still include it as a cherished moment, and I'm not yet willing to forcefully end it if my daughter still wants her milks.

Plus, even if I were to reconsider total weaning at this point, the doctors said that the longer it'd been since I'd been actively lactating the better/safer it would be for me in the long run. Thing is, the radioactivity apparently concentrates in breastmilk, which means that if I weren't completely dried-up I'd have radioactive bits of milk hanging out in my breasts for a while after the treatment. And that is not so great when it comes to avoiding things like, oh, breast cancer.

Also, patients having the iodine treatment shouldn't be around children for several days to a week (so Uli wouldn't be able to be in the house with me. Because how do you tell a toddler to stay on the far edges of any room Momma is in? Stay away from Mamma! No hugs!) and even around adults you need to be careful, flushing twice after using the toilet, and scrubbing down the shower/tub after you bathe. Kind of intense.

So I'm not doing the radioactive iodine.

Instead, I'll be having the thyroidectomy. And it's okay. The surgeon said that it's actually the best option for people with Graves because getting rid of the thyroid altogether will mean the antibodies currently circulating in my system an attacking my thyroid will hopefully calm down once the thyroid is gone (leaving less risk to my eyes and to any future fetuses' thyroids).  

But I'm still not totally thrilled.

I got lasik so that if civilization came to an end I would still be able to see even without contacts. That was important to me, to have healthy eyes that could help me survive in a time of crisis. And now I'm struggling to accept the idea that without my thyroid I'll be stuck relying on hormone pills for the rest of my life. Or I'll die. Die! I'll be a lifelong Walgreen's customer or I'll die. I hate that thought.

Also, and embarrassingly, mostly I'm worried about the thyroidectomy scar. Which, rather than hiding quietly below my bikini line as the cesarean scar so thoughtfully rests, will be right up there POW! on my neck. For all to see and gawk at and make Nearly Headless Nick jokes about.

Yes, I am hardly better than my thirteen year old self. I could be worrying about surgical mishaps, flooding and famine, car accidents, the night Uli will have to spend away from me while I'm in recovery. But no, I am concerned about a red line on my neck.

But that's how it is. I predict I'll be wearing a lot of scarves this next year. I'll pretend it's because I'm all into fancy retro looks, but you'll know the truth.


Betsy August 18, 2010 at 12:37 AM  

Oh Thomasin, I'm so sorry! I have a friend who had the same thing during/after pregnancy, and she treated it radioactively. Both options are so hard, I can imagine. Thank you for sharing and I am thinking about you. Scars tell a story, Uli's scar is beautiful, and the one on your neck will tell a different one. I have a scar on my neck, too, from them placing my vena cava filter, and I think back on that time (when I was most terrified of many of the same things you mention, having a "condition" using medication for life, dying) and that scar reminds me that I'm strong. You are strong, too, Thomasin, amongst many other wonderful things, and you will still be beautiful, scarf or not. Much love.

Kathy Dalsing-Kong August 18, 2010 at 10:14 AM  

I am so sorry to hear this Thomasin! Those are really hard decisions to make and hear about.

I recently experienced a few health issues and we are discussing how we may need to go about ending nursing with Aurellia, but it is not nearly as complex as what you are dealing with. Sounds like your heart is guiding you very well.

I had a friend that had a scar on her neck from surgery, I think it was for lymph nodes removal and you would be surprised how fast the scar fades after the first year.

It absolutely SUCKS being on medicine every day for the rest of your life, and life is not fair, but know that you are not alone. There are heart patients on blood thinner every day to survive or heart palpatation meds to slow/speed their hearts to survive, type 1 diabetics that need insulin several times a day to survive. You are strong, will become even stronger and you can do this!

Stay strong and sending lots of love and prayers your way.

Mrs. Darcy August 18, 2010 at 10:56 AM  

Hey, you're back!!! YAY! but sorry about the surgery?!!?

I'm in the "medication for life" club and yes, it's annoying but it will be alright. Here's how I manage...
- find a local mom and pop pharmacy that delivers (use walgreens as a back-up if you're out of town and forget your meds)
- put your meds in a daily/monthly dispenser - occasionally, I have skipped this step and then couldn't remember if I took it or not...taking several seconds to fill the dispenser will save you from all kinds of craziness.

I have a friend that has this same scar and I honestly never noticed it until she pointed it out. She makes and wears necklaces to cover it. Even without the necklace, it's barley visible.

Sounds like you made the best decision but what a frustrating decision to make...I'm sorry!
Glad you're blogging again though!

Thomasin August 18, 2010 at 1:25 PM  

Aw, thanks you guys. Yeah, I know I'm not the only one, I just never thought *I'd* be one to *need* medication, you know. :-p But I'm thankful that there IS a treatment for this, because, frankly, this past year has kind of sucked. And now I have hope for recovery and feeling better. :-)

I'll probably post some scarf pics once surgery strikes---there are actually some fun YouTube videos about how to tie them!

Kathy, I'm sorry to hear about your health troubles. Our bodies are amazing, but imperfect and I wish it weren't so. I really do.

Mrs D, thanks for the tips! I will have to get one of those bigger pill holders. And look into a local pharmacy. :-)

Anonymous August 18, 2010 at 2:11 PM  

Hey, scarfs say "I'm cool, but still have fun"! I can totally see you rocking the scarf...a girl has gotta have accessories! I'm sorry to hear about the surgery and I know it must be scary but you are brave...hey you admitted to all of us you are vain-LOL. Seriously though our bodies are a big part of our identity, as women, and it is hard to give up control over that, it doesn't mean we are vain (besides all the cool people are:). Wishing you a safe surgery, a fast recovery and many feel better hugs form Uli!

Colby's August 20, 2010 at 9:05 PM  

As a family who makes monthly trips to Walgreens for lifetime medicine, in the end, it is not so bad. Just remember that you are making choices that will allow you to be with Uli and Justin for years to come. And that scars are battle badges. It means you have faced something and overcame it. We should show this battle scars with pride...that we have lived our life and faced the challenges put in front of us with strength, courage and teh support of those that love us. I know you will fly through this with style and grace!

Thomasin August 20, 2010 at 11:09 PM  

Thank you, Tara & Genny---I'm lucky to have support like you guys. (But seriously, I'm going to wear the scarves, so don't poke fun!)

  © Blogger template 'Isfahan' by Ourblogtemplates.com 2008

Back to TOP