5 Year Survival

11 Aug

Five years.

Today is my five-year cancer-free anniversary. Most cancer survival statistics are given in five year increments. My cancer was low risk enough that I never had to think about five years as an “if.” Yet my life has changed drastically since the day I lost my thyroid. I miss it every single day. I’ve grieved for my pre-cancer body. I’ve denied the inevitable and felt really, really sorry for myself.

Over the last five years, I have:

  • Gained 28 pounds twice – once with a pregnancy, once without
  • Lost 15-20 pounds three times, only to gain it back
  • Lost handfuls of hair only for it to grow back gray
  • Entered perimenopause…in my 30s
  • Had anxiety and heart palpitations
  • Been exhausted and depressed
  • Pushed my doctor to listen and change my treatment
  • Been passive and let my doctor direct my treatment based on TSH
  • Had my blood drawn 42 times
  • Changed my thyroid medication 12 times

Did I survive five years? Yes. Did I do it with grace? Absolutely not. Every time I gained weight or developed a new health problem I completely melted down and scrambled to restore to “normal.” I have been to the ER twice in the past four months due to side effects of what were supposed to be remedies. I have avoided mirrors and photos and outings. I am missing out on being happy because I can’t imagine a real life at this size.

I have wonderful, wonderful things in my life. I have a beautiful, amazing family. My daughters are healthy, happy and well-adjusted. Both my husband and I have good jobs. I haven’t had even a glimpse of a cancer recurrence. But my focus has been on the aspects of my life that aren’t what they used to be. I don’t feel good, I don’t look good and I don’t like it. I am writing this blog post as a vision statement for the next five years post-thyroid cancer. The next five years can’t be just about surviving. It’s time for me to start living again. I want to focus on my health. I want to put my energy toward things that energize me, not drain me. I want to eat to fuel my body and exercise to be stronger. I want to live longer and feel better, not just look better.

Swimming - Olympics: Day 4

RIO DE JANEIRO, BRAZIL – AUGUST 09: Michael Phelps (L) of the United States leads Chad le Clos of South Africa in the Men’s 200m Butterfly Final on Day 4 of the Rio 2016 Olympic Games at the Olympic Aquatics Stadium on August 9, 2016 in Rio de Janeiro, Brazil. (Photo by David Ramos/Getty Images)

Like the rest of the internet, I am inspired by this photo of Michael Phelps and Chad le Clos. But for me it’s not about winning. In fact, it’s about taking myself out of the competition. I am not going to compare myself to other women or other thyroid cancer survivors anymore. I am not going to miss out on happiness and health because I keep looking over my shoulder at pre-cancer Sarah. I am looking straight ahead at the rest of my life. I’m moving on.

Thyroid Cancer – Three Years Later

11 Aug

timehop

Three years ago today, I was having my thyroidectomy. Two years ago, I was having my first scans. One year ago today, I was pregnant. On all three occasions, I was frantically worried about my health and my future. Today, I only remembered that I had cancer because my TimeHop app told me so.

Life is crazy that way…so overwhelming when you’re in the moment, and then when you come out on the other side, you barely remember the anguish. I wish someone would invent a TimeHop app that showed you the future. I wish I could go back in time and tell myself more than the doctors were telling me.

Here’s what my fast-forward TimeHop app would have said on August 11, 2011.

In three years, you will be cancer-free. Your scar will be barely noticeable. You will have been on so many different dose combinations of Synthroid and Cytomel, that you will need a storage cabinet for half-used bottles. You will be within five pounds of what you weigh today, but you’ll still obsess about it constantly. You will have a totally different job and career path. You will have THREE beautiful, healthy, perfect daughters who make you laugh every day. Being abnormal will have become so normal, that you will ask questions like “am I cold, or not?” out loud. Having cancer will give you perspective about marriage and motherhood and happiness that you would never trade for your thyroid.

Also, it’s a good thing you like Coldplay, because repeating the same song over and over is the only thing that calms your youngest daughter down enough to sleep.

Three years later, I’m still here. I worry way more about grocery shopping than I do about not having a thyroid. Most days I am too busy to look back. I can’t trade my thyroid cancer because it got me here. And August 11, 2014 is pretty awesome.

My Perfect Christmas Gift

24 Dec
annie1

Baby Annie
Born 12/4/13
1:47 p.m.
7 lbs. 12 oz.
19 3/4 inches

I received my Christmas gift three weeks ago when my perfect Anna (Annie) was born. The last month of my pregnancy was rocky…I had prodormal labor, and went to the hospital three times during my last two weeks. I caught a nasty respiratory virus over Thanksgiving, and I really thought I couldn’t take it anymore. But little Annie waited until the time was exactly right…my water broke at 4:30 a.m. on December 4, and she made her grand entrance (after about an hour and a half of real pain) at 1:47 p.m. When they put her on my chest, she didn’t make a peep. She just stared at me with her peaceful little face.

My recovery has been so good, and Annie is such a good baby, that I kept waiting for some bad news to arrive. But there is none. Annie is a little angel – a perfect Christmas gift. As for my thyroidless pregnancy and birth experience, here is the list of my worries, paired with my final outcomes.

  • Ability to conceive – no issues
  • Excessive weight gain – gained 27 pounds (the least I have ever gained with a pregnancy)
  • Inability to control hormone levels – had to stay organized and get tested frequently, but leveled out with no problem by week 25
  • Difficult labor and delivery – it was no picnic, but unrelated to my thyroid!
  • Cancer recurrence – I checked out “cancer-free” in July, and will follow up again in April
  • Birth defects – Annie is BEYOND perfect!
  • Congenial hypothyroidism – I felt like I couldn’t breathe easy until Annie’s own thyroid levels were checked. Again, she is perfect!
  • Hormone crash post-delivery – This still might happen, but so far, I am the LEAST hormonal that I have ever been post-delivery. No tears, no temper tantrums, and so far, no hypo- OR hyperthyroid symptoms. My body may have adjusted to the new higher dose of medication, or I may need to adjust in a few months. I will have follow-up testing next month.
  • Breastfeeding issues – Annie is a champion breastfeeder, and my thyroidlessness has had zero effect on my milk supply. This has by far been my easiest transition into breastfeeding.
  • Weight loss post-delivery – I gained 27 pounds, and after three weeks, I have 7 left to lose to get back to my pre-pregnancy weight. I am struggling to celebrate this milestone, because my natural reaction is to compare myself to my wedding photos, and say that I really need to lose 20 pounds. I have to remind myself that I believed having another baby might mean I would NEVER lose the pregnancy weight, and that is obviously not true. My pre-pregnancy jeans (though a little snug) even zip all the way!

It’s hard to imagine a better Christmas gift than Annie. She is the perfect addition to my family, whom I love so much. I am humbled and grateful and so very happy. Merry Christmas to all of you, and the best of health and happiness in 2014!

 

Tips for a Healthy Hypothyroid Pregnancy

28 Oct

ForTwoFitness-AmbassadorSeal_200

I was featured on the For Two Fitness Blog! Link below and here is the full text:

TIPS FOR A HEALTHY HYPOTHYROID PREGNANCY

After my second daughter was born, I was diagnosed with papillary thyroid cancer. My chances for survival were very good – more than 95% – but my chances for a permanently decreased metabolism, altered quality of life and infertility were also very high. Two years after my cancer treatment, I became pregnant for the third time, and I celebrated my good fortune. But then I immediately got to work on a plan for a healthy pregnancy.

Nearly 10% of the female population has some sort of thyroid disease, and uncontrolled hypothyroidism can cause serious pregnancy complications. I was personally very concerned that my thyroidlessness would magnify the already difficult challenges pregnancy poses on health and fitness. As I enter my 35th week of pregnancy, I am happy to report that I feel and look great, and so does my baby! Here are my top tips for a healthy hypothyroid pregnancy.

MANAGE YOUR STRESS AND FATIGUE

I work full-time, have two young children and live a go-go-go lifestyle. It was important to me that during this pregnancy, I had enough quiet time to listen to my body. Make a list of your weekly activities, and ask yourself which ones are critical, and which could take a backseat for a season. Ask for help where you can. Rely on friends, family and neighbors. Give yourself permission to say no when you need to, and prioritize rest and rejuvenation.

MANAGE YOUR MEDICATION

A women’s thyroid hormone needs can increase as much as 60% during pregnancy. Unfortunately, most doctors take a reactive approach to medication management. Through my own experience and research, I worked out a schedule to track my own progress. I also found that most doctors primarily use thyroid stimulating hormone (TSH) as a hormone marker, but my own symptoms are more closely linked to my free hormone levels – free T4 and free T3. I had my doctor check all three levels the day I had a positive pregnancy test, and then every 4 weeks after that. As my pregnancy progressed, I needed to increase my dose and am now taking 40% more medication than I was pre-pregnancy to keep my TSH in lower end of the normal range, and my free hormone levels in the mid- to upper-ranges. The lab I use provides an iPhone app for patients to save and track their own results, but you can also do this in your own spreadsheet. The important thing is to take ownership and partner with your doctor to stay on top of your hormone needs and give both you and your baby what he/she needs.

MANAGE YOUR WEIGHT GAIN

Most non-pregnant hypothyroid women struggle to control their weight. In my experience, the slightest variation in thyroid hormone levels can result in 10 pounds that I have to work extra hard to lose. Naturally I was nervous about what a pregnancy with fluctuations in hormone needs would mean for me. To make matters more challenging, I rely on very high-impact activities to manage my weight when I am not pregnant, like TurboKick and running. During my first trimester, I continued these activities, but I definitely needed to modify my fitness plan as my body changed and my belly grew. Now I enjoy walking and Tracy Anderson’s The Pregnancy Project videos to keep me as fit as possible, and I focus on eating frequent, smaller, protein-packed meals. I use the Pregnancy Pounds iPhone app to watch for any big jumps in weight gain (which could indicate an issue with my medication dosage). I give myself small treats instead of big splurges to control my cravings, and I drink a lot of water. As I enter my last month of pregnancy, I have gained about 20 pounds, which is healthy for my body type, and actually less than I gained with my other pregnancies.

Generally speaking, hypothyroid women can have happy, healthy pregnancies too. Listen to your body, make modifications when you need to, stay fueled and hydrated, own your treatment plan, watch for major weight fluctuations, and treat yourself once in awhile!

http://fortwofitness.com/blog/2013/10/tips-for-a-healthy-hypothyroid-pregnancy/

30 Weeks

25 Sep

Two years ago, I was recovering from surgery, starting a new job, and worrying about the impact thyroid cancer would have on my life.

Two months ago, I was struggling to get my thyroid hormone levels under control, and worrying about the impact hypothyroidism would have on my baby.

Two months from now, I will be holding my newborn baby girl – the evidence of life and happiness for the thyroidless.

It hasn’t been an easy road. I am on my 5th dose adjustment of medication, I am tired all the time, and I have had a miserable cold for the last week. But my thyroidless pregnancy hasn’t been the overwhelming disaster that I thought it would be. I’ve gained a reasonable amount of weight (~20 lbs.) and I managed to avoid gestational diabetes. I seem to have stabilized for the moment on 175 mcg Synthroid/ 5 mcg Cytomel, and I trust my OBGYN completely. I had my yearly check-up at U of M, and all of my lymph nodes look good and my Tg remains undetectable. If there wasn’t a “barely-there” scar on my neck, you’d never know that I had thyroid cancer.

And the best news of all is that my miracle baby is perfect. She has 10 fingers, 10 toes, and all of her organs are in the right place. She weighs 3.5 pounds already, and has frequent dance marathons. During my recent ultrasound, she sucked on her fists and made annoyed facial expressions. We’re in love already and we can’t wait to meet her.

3

Baby sucking on her fist – 30 weeks

I am still bracing myself for the post-birth roller-coaster.  Pregnancy increased my thyroid hormone needs by 40%. Will I suddenly need 40% less after the baby is born? Will all my hair fall out? Will I overheat and have the shakes? Will I bounce around between hyper- and hypothyroid before I figure it out? And although I haven’t gained an unusual amount of weight for a pregnant person, am I doomed to keep it on forever?

I am going to try to live in the moment and deal with those things as they come. For now, I am going to worry about middle names, crib bedding and baby monitors. And in my spare time, I might join in on some of my baby’s dance marathons.

29 weeks - with my pregnant friend who doesn't look pregnant

29 weeks – with my pregnant friend who doesn’t look pregnant

Stop. Breathe. Celebrate!

3 Jul

We made it to 18 weeks! More importantly, we made it to the big ultrasound. The high-risk OB checked over every organ, every finger and every toe, and our little baby is developing perfectly. I am the first to admit – I am neurotic. I rarely enjoy good news without wincing and waiting for the other shoe to drop. So before I start worrying about my thyroid medication again, I really want to savor this moment.

We made it this far. We’re going to be okay.

I used to be a bit skeptical about gender reveal parties. Is it just another excuse to post pictures on Facebook? But we really needed to celebrate this milestone with our family and friends. Take a moment and celebrate our wonderful news with us! This 4th of July, I feel totally and completely happy and blessed.

Our beautiful baby at 18 weeks

Our beautiful baby at 18 weeks

Our Voting Table at our Gender Reveal Party

Our Voting Table at our Gender Reveal Party

Our family votes - 3 to 1 for a girl!

Our family votes – 3 to 1 for a girl!

Majority votes - It's a Boy!

Majority votes – It’s a Boy!

So will we be blessed with a baby girl or a baby boy in 22 weeks? You’ll have to watch the video to find out.

 

Tracking My Hormonal Rollercoaster

13 Jun

I am officially in my second trimester! And as the baby grows, my hormones continue to be completely whacked out. I increased my Synthroid dose from 125 mcg to 137 mcg at 9 weeks. At that point, my thyroid labs were considered “normal.” But since my surgery, my TSH hasn’t been above 0.6. So when it started to creep past 1.0, I thought it was time for a bump. And thank God I pushed the issue, because just 6 weeks later, my TSH has jumped to 4.19. What would have happened if I hadn’t upped my Synthroid dose?

I have had hypothyroid symptoms before, but luckily, I have never really experienced extreme hypothyroidism like many thyroid cancer survivors are forced to endure during treatment. I have renewed sympathy for patients who have to let their TSH levels rise to 50 for treatment and testing. Here’s a glimpse of what it feels like to have a TSH of 4.19.

Last Saturday was my daughters’ dance recital. That meant spending most of the day on Friday at a chaotic dress rehearsal, and organizing costumes, hair, make-up, snacks, personal electronics and crafts for two children. Normally, I can handle this kind of stuff. Not this time. First, I made pancakes and forgot to add eggs. Then, I left the burner on for about 2 hours, nearly starting my house on fire. Then, I tried to wash one daughter’s hair with Dial hand soap. During my own shower, I somehow flooded my bathroom floor, and I was a half-second from pouring cat food into my washing machine instead of detergent. I felt like I had lead weights on both my legs, and I just wanted to crawl back into my bed. In the end, the recital was a success, and both my girls looked beautiful, but I still felt exhausted, depressed and nauseous. In general, I have just enough energy to make it through my workday. Then everything else pretty much falls apart.

I had my blood drawn on Monday, half wondering if I was just going crazy, and half knowing I needed more thyroid hormone. Luckily, my TSH finally reflects how I feel, so I had no problem getting a bump to 150 mcg of Synthroid. I am so happy that my OB-GYN’s office is so responsive and understanding. Still, I am concerned about having an elevated TSH for any period of time during my pregnancy. Did it affect the baby? Is everything okay?

I am channeling my all of my out-of control feelings into tracking my bloodwork and hormone dosing. Those who know me will appreciate how I can find PowerPoint to be comforting! However, I do think it’s a good idea for hypothyroid pregnant moms like me to take control of their healthcare and know their numbers. If you use Quest Diagnostics labs, I highly recommend their Gazelle app to get copies of lab reports. I can access lab results from any time period right from my phone, and email or fax them directly to my healthcare provider. You can download it here.

Gazelle

Want to know how my thyroid labs compare to last year at this time? I have it all right on my iPhone.

And if you still feel the need for additional control organization, here’s how I am tracking my thyroid activity during my pregnancy.

pregnancy thyroid

Check out how my TSH has jumped up! Overall, my FT4 and FT3 have dropped slightly, but have been stable enough to make me feel a little better about the risk to the baby.

I am scheduled for my ultrasound in 3 weeks, and I am really looking forward to seeing the baby with my own eyes. I am praying I will finally be able to enjoy this pregnancy instead of feeling like a science experiment!