“If you are newly diagnosed with thyroid cancer, be warned that there are many logistics involved when preparing for your surgery, radioactive iodine treatments, and recovery – and it’s even more difficult to plan and get things done because hello you have cancer and you’re not feeling awesome. Having your thyroid removed, can cause you to become hypothyroid, which may make you feel like a zombie. Below are some tips for the newly diagnosed, when preparing for your own private zombie apocalypse.”
Why are zombie apocalypse themed movies, books, and TV shows so popular? It’s because the zombie apocalypse is here. We zombies, aka those of us living with hypothyroidism, walk amongst you every day. It is estimated that approximately 10 million Americans are hypothyroid, the symptoms of which can include weakness and fatigue, (zombies are slow and tend to stumble), memory loss (brains!), depression and irritability (zombies don’t seem too cheerful do they), and dry rough pale skin (this zombie analogy is totally working), amongst other uncomfortable symptoms.
My Personal Zombification
There are two main causes of hypothyroidism, Hashimoto’s thyroiditis and thyroid cancer. My zombification occurred due to thyroid cancer. In the months leading up to my diagnosis I became extremely hypothyroid. My thyroid was kaput! It was overrun with cancer resulting in major brain fog. I remember feeling frustrated because it took me forever to remember words. It felt like I was losing the ability to think and my personality was disappearing. I love to be clever and make jokes, but that can’t happen when your brain is working in slow motion. Wit requires timing.
Plus, I was in a constant stupor. My lethargy seemed to be increasing every day. I wanted to sleep all the time, but I have a career and needed to be productive at work. I was scared that I might fall asleep at my desk and get fired. Fortunately, that never happened, but I was living moment to moment trying to stay awake. Meanwhile I was trying to pretend that I was my normal vivacious self. I still wonder whether my friends and co-workers could tell that I was the walking dead. I’m pretty sure I deserve an Oscar for my performance blending in amongst normal human beings, whilst being a zombie.
Thyroid Removal and Hypothyroidism
My case was unique because most thyroid cancer patients don’t have any symptoms, they feel fine except they have a lump on their thyroid, and often the lump is so small it goes unnoticed for years. However, once you have your thyroid removed, which is the recommended treatment for thyroid cancer, you are at risk of becoming hypothyroid for the rest of your life. This is because you no longer have the ability to make thyroid hormones. Yes, they give you a pill to replace your thyroid hormones, but a pill will never be as effective as a functioning thyroid. A pill is a once a day dose, whereas a functioning thyroid will modify thyroid hormone production throughout the day according to your body’s needs.
Zombie Apocalypse Preparedness
The incidence of thyroid cancer is increasing, which is thought to be due to better diagnostics. Fortunately, the thyroid cancer survival rate is also increasing, meaning many of us will be walking around thyroid-less and as a result feeling the effects of hypothyroidism. Therefore, this zombie apocalypse isn’t going anywhere. It’s time to start preparing!
Here are some tips to prepare for your own private thyroid cancer zombie apocalypse:
- In the case of an apocalypse you need to gather your friends and family around you. Cancer isn’t a solo sport, bring your friends and loved ones with you to your doctor’s appointments. Don’t try to go through it alone.
- Being told you have cancer is overwhelming and it can be hard to remember what the doctor is telling you. Buy a notebook to bring with you to all your doctor’s appointments. Use the notebook to write down the questions you have for your doctor, and to write down what your doctor is telling you about your case and treatment plan. I found this to be essential because I would think of a ton of questions, but then once I got to the hospital my mind went blank.
- Ask for copies of all your test results and bring a folder with you so you can keep everything in one place.
- Mark down all your appointments in your calendar. Using the calendar on your phone is best because it will send you reminders. You will likely need several tests and check-ups before your surgery, (i.e. blood tests, neck ultrasounds, CT scans, pre-surgery consult with your surgeon, etc.). It’s hard to keep it all straight.
- Beware of the internet – ironic because you’re reading this on the internet, and I’m telling you to be cautious about what you read on the internet, I get it. But here’s why I say beware of the internet: Between being diagnosed with thyroid cancer and having surgery, I had a scan of my neck and chest which revealed that the cancer had spread to my lungs. My doctor assured me that my prognosis was still good. I however immediately went to the internet which told me I was dying. And somehow believed that over my doctor – stupid I know, but cancer is scary. If you want more information about thyroid cancer, see the ThyCa: Thyroid Cancer Survivor’s Association, Inc. website at http://www.thyca.org/. I don’t work for ThyCa, or get paid by them or anything, I’ve just seen several doctors and they all recommend this website above the rest.
- Use social media like Facebook for support. Yes, you will want to tell your closest friends and family that you have cancer, however that can be exhausting and emotional. After a while I couldn’t tell people anymore, so I posted it on Facebook. As a result, I got an overwhelming response of love and support that truly helped me through my recovery.
- Do the paperwork ASAP. Inform your employer that you have cancer and will need flexibility to go to doctor’s appointments and time off to recover from surgery. Find out if you have short-term disability insurance through your employer that will provide you with some portion of income while you recover. If so, you will need to file paperwork and so will your doctor. Also, you should file for FMLA, The Family and Medical Leave Act is a United States federal law requiring covered employers to provide employees job-protected and unpaid leave for qualified medical and family reasons. This way your job will be protected while you recover, which is one less thing to worry about.
- Call you medical insurance to find out about your coverage and your deductibles. For me, bills and debts are more stressful than cancer, so it was better for me to know up front what to expect from a financial perspective.
- Join a Thyroid Cancer support group! Surrounding yourself with others who understand what you’re going through is essential. My ThyCa Support Group means the world to me and has really helped me to understand more about thyroid cancer and has helped to heal emotionally from my diagnosis. Here’s a link to help you find a Thyroid Cancer Support Group.
Thyroid Surgery Preparedness
- In preparing for any apocalypse it’s important to stockpile food. Also, your friends will offer to make you homemade soup and that’s awesome! It really helps! After surgery you can eat whatever you want, however I recommend stockpiling soft comfort foods so that you have everything you need in your home. Things I liked post-surgery were Jell-O, Ensure protein shakes, green juices, bananas, soup, toast, and saltines.
- Ice is super important. If possible, get ice chips. It feels good on your throat to swallow ice chips, and you will want to put ice on your neck to reduce the pain and swelling.
- Buy a calcium supplement and have it waiting at home because you may need it post-surgery. It is common for your parathyroid glands to become traumatized during thyroidectomy surgery, resulting in a condition called hypoparathyroidism. It causes muscle spasms as well as tingling and numbness in your hands or feet. It sucks! Therefore, your doctor might prescribe a special form of vitamin D called Calcitriol and a calcium supplements until they heal. I liked the cherry flavored “Tums Chewy Delights”. They taste much better than the hard chalky Tums.
- Buy a pill organizer – one that has boxes for morning, afternoon, and night meds. So essential! You will have to take your dose of thyroid hormones (i.e. Synthroid or Levothyroxin, etc.) in the morning with water at least a half hour to an hour before you eat or drink anything else. So for me, I keep my pills and my water next to my bed. I take the pill when my alarm goes off, and then I fall back asleep for an hour. I now sleep so soundly, that I often can’t remember if I took my pill or if I just turned off my alarm and went back to sleep. Therefore, having the pill box is essential. Also, if you need to take calcium supplements after surgery, you will have to wait 4 hours after taking your thyroid meds to take the calcium. Plus, you may need pain meds for a few days after surgery and for me those were best taken at night because they caused drowsiness. The spacing of your meds is very important and a pill box will help!
- Being a zombie sucks! Don’t do it alone! If you live alone, find someone to come stay with you after surgery to help you with your recovery. I could barely get out of bed by myself. I could barely speak because my voice was hoarse. I had three drains in my neck that I had to empty several times a day – which was super gross. Luckily, I flew my mom out to take care of me for 10 days, then my best friend McKenzie flew out and stayed with me for another 10 days. I am grateful for them every day for their love and support! Everyone’s recovery is different. Some people are back on their feet and back to work only a few days after surgery, some take a few weeks, for me it took several months to recover (but that’s including recovering from total neck dissection, low calcium levels, hormone withdrawal, and a whopping dose of radioactive iodine).
- Bills, bills, bills! When you get your medical bills you can call the hospital and ask for a payment plan. You don’t have to pay the entire bill all at once. I had my payments broken up into monthly installments and it really helped!
Radioactive Iodine Preparedness
- Before you get your dose of Radioactive Iodine (RAI) – you’ll need to go on a special low iodine diet. The purpose of this diet is to starve any remaining thyroid cancer cells of iodine so that when you take RAI your cancer cells eat it up, and then as a result are destroyed by the radiation. The low iodine diet is complex and can be confusing so you will want to read about it on the ThyCa website and then go grocery shopping and prepare your low iodine meals in advance. Ask your friends for help with low iodine meals, because if you’re still very sick, cooking homemade meals can feel overwhelming. I was very fortunate, my friends started a Meal Train account so they could sign-up online to bring me homemade low iodine meals every day leading up to my RAI treatment. I will be forever grateful to them!
- When you get your RAI you are radioactive and a danger to your friends, family, and co-workers – so like in the zombie movies they will need to hide from you. You will need to be in isolation so that you don’t expose anyone to the radiation being emitted by your body. You can’t even share a bathroom because your urine is radioactive. If you have a spouse and kids, you might want to send them to a hotel, or you might check yourself into a hotel to avoid exposing them. If you have pets, you will need to find them a place to stay until you are no longer a danger to them.
- The RAI made me very nauseous, so I would suggest asking your doctor for an anti-nausea medication to have on hand. If you vomit right after taking your radioactive iodine, it’s a hot mess (haha pun intended) because now you have radioactive vomit to clean up, and you may have to take another dose of RAI. But it will be difficult for your doctors to dose you appropriately because they won’t know how much you absorbed before you tossed your cookies.
- More food stockpiling! You can eat anything you want the day after your RAI treatment. So line up your favorite foods because the low-iodine diet is over!
- RAI can damage your salivary glands, and dry mouth is gross and annoying. I used Biotene products (tooth paste, mouth wash, hydrating gel, etc.) to hydrate my mouth because I learned that dry mouth can lead to tooth decay and gingivitis. I’m super vain when it comes to oral hygiene so I wasn’t having any of that. Plus, I started drinking Pedialyte to replenish my fluids. I was told I should eat sour candies like lemon drops and sour patch kids to stimulate my salivary glands, but I’m not into candy, plus I worried that doing so might increase the risk of tooth decay.
- In my experience everything tasted gross for a few weeks after my RAI treatment, even water – sorry there’s nothing you can do to about it, but sometimes knowing what to expect makes you feel more prepared.
If after surgery and RAI treatment you still experience fatigue and symptoms of zombification, talk to your doctor about it. It’s possible they can adjust your thyroid meds or give you other recommendations that may help like exercise, sleep hygiene, and diet.
It’s important to prepare for disasters of all kinds. Even the Centers for Disease Control and Prevention (CDC) has a Zombie Preparedness webpage. I mean, who has time for cancer? I don’t! It’s like a second job, except you don’t get paid, it’s expensive, and exhausting. But we fight through it anyway, and it’s much easier when we are prepared, plan ahead, and involve our friends and family for support and assistance.
For information about thyroid cancer see: http://www.thyca.org/
For information about hypothyroidism see: http://www.endocrineweb.com/conditions/thyroid/hypothyroidism-too-little-thyroid-hormone
For information about the Low Iodine Diet see: http://www.thyca.org/pap-fol/lowiodinediet/
For information about Radioactive Iodine (RAI) treatment see: http://www.thyca.org/pap-fol/rai/
To find a Thyroid Cancer Support Group see: http://www.thyca.org/sg/
To read the CDC’s Zombie Preparedness site see: http://www.cdc.gov/phpr/zombies.htm