In September 2007, I finally talked to my doctor about the lump I felt on my throat in May. It was my thyroid and it was cancer. To help me keep the people I love informed about what was going on, I wrote a blog. Here’s the story of my journey: The Adventures of Radiation Girl.
(Note: I did not edit these posts again before posting here. I even left in the double space after a sentence, which wasn’t easy reading it again. I wrote much of this in a compromised state, so be gentle with me.)
Thanks to everyone for all the love, prayers, positive thoughts, and support you’ve sent my way and continue to send. With all that positive energy coming my way, the outcome of my surgery couldn’t have been any less than divine.
I did have a little of a bumpy start. I’m pretty fearless about most things, but I hate needles. And I have crappy veins. So they send the student nurse in to put in my IV. She’s shoving the needle around my top of my hand saying, “Crap” and “Oh no” - not exactly what you want to hear from someone poking you. Apparently my veins roll and she couldn’t get the long IV needle to go into my vein. The RN tried to put it in too, but couldn’t even get enough blood for pre-surgery lab tests. An excellent phlebotomist came in and found a vein to take the blood but wasn’t “qualified” to put in the IV. By this time I’m nearly climbing the walls with blood pressure of 200 over god knows what. I’m glad my mom and dad where there to hold my hands and rub my forehead. (Here’s a little pre-surgery tip for you I didn’t know: drink lots of water the day before surgery and your IV will go in easier. Probably wasn’t a great idea to have that Swirl cocktail with dinner the night before either.)
By the time I got to surgery waiting I was really scared and not liking how things were going so far. My mother-in-law, Dr. Page, who is a gynecologist met me in pre-op and assured me everything was going to be okay – they’d brought in the surgery A-Team for me. The super hero male RN told me not to worry, that he wouldn’t have any problem getting my IV in and that he’d show me that it wasn’t a sign of things to come. He had the IV in so fast and so painlessly I was amazed. I don’t remember much after that.
Coming out of anesthesia is very strange. I’ve only had surgery once before. I was only eight when I had my tonsils out, but I distinctly remember what it was like to return to consciousness. For me it’s like being at the bottom of a really deep swimming pool with people yelling at you to swim to the top to get air. That’s a scary sensation for me, since I had asthma as a kid and frequently had breathing problems when swimming under water. It’s hard to get myself to come into conscious because sleep feels so good and keeps sucking me back. But at the same time there’s a panicky feeling that I need to swim to the top, to the air, before it’s too late. Although it felt strange, I didn’t have any problems in recovery.
I spent the night in the hospital, getting little rest as people came in to take my blood and check my vitals every couple of hours and my roommate groaning and panicking when she couldn’t find her morphine pen. I was up on my own a couple of hours after surgery and mercifully was sprung early afternoon on Friday to come home to rest in my own bed. Now I’m just laying low and trying to let my mom and husband take care of me the best they can.
My surgery went very well and the surgeon told me it was a piece of cake. He was surprised that one of the nodules was the size of an egg, but all nodules were regularly shaped and encased in their own membrane, which I guess is a good sign. He thinks they got it all, that it hasn’t spread any further, and the lymph nodes around it look good. He said the nerves for my vocal cords were “fat and juicy” and easy to avoid, so I’m glad there are no changes to my voice. He saved three out of four of my parathyroids (the gland that regulates calcium uptake and is important to bone health), which is more than enough to get the job done. So really it was quite a success.
I’m feeling great, but get worn out pretty quickly still. I’ve been off the pain meds since Saturday and feel much more like myself without them. I was amazed at how little my throat hurt and how easy it was to talk in a soft voice right after surgery. Now my voice is nearly back to normal, though I’m not quite up for heavy metal karaoke yet. My hand is extremely bruised from the student nurse and I have bruised needle tracks up my arm that look awful, so I’m glad the weather is cool enough for long sleeves. I need to go shopping for Isadora Duncan scarves and figure out how I can work them into my style temporarily to spare people the sight of my zipper neck. Really it doesn’t look too bad, but is still pretty swollen.
I’ll find out the results of the biopsy on my thyroid next week, hopefully by Thursday, to find out if my thyroid was cancerous or not. If it was, it’s fairly easy and quick to treat and we’ll cross that bridge when we get to it. I’ll let you know as soon as I can.
The next hurdle is getting my replacement thyroid medication right. They want to wait three weeks until I bottom out to get started with the testing to find out what I need. In the meantime I’m supposed to expect my energy to decrease and that I’ll be more emotional than usual. Although I’m not thrilled at the sound of that, it will only be temporary – so forgive me if I’m a little nuttier than normal in the next month or so, bear with me, and keep sending me lots of love.
Update November 3, 2007
I’m overwhelmed by the outpouring of love and support. I’m the luckiest girl in the world to be so loved! Thank you so much.
I’ve been getting lots of inquiries about my test results and overall well-being, so I just wanted to touch base to let you know what’s going on. I’m sorry to leave you hanging, but I haven’t gotten the pathology results back and have been waiting for something conclusive to tell you.
My surgeon called me the week after my surgery and told me that the pathology results were “inconclusive”. On the good news side, it means I don’t have full blown cancer. On the bad news side, the cells are “abnormal” so we have to keep trying to figure out what’s going on before we can move forward with my next course of action. A sample of my thyroid has been sent off to the “foremost authority of thyroids” in Pennsylvania. The results were supposed to be back next week, but alas, it hasn’t happened yet.
Although you’d think the suspense would be killing me, my spirit and attitude are good. My mantra lately has been “It is what it is” about everything in life, and am going about living my life normally. I figure if I spend my energy calmly accepting whatever destiny brings me, I’ll be able to look back at all of this in a year as a time of growth and not a time of despair and struggle. Besides, I can take a licking and keep on ticking, baby!
Thanks to my mom, I’ve been up and around since a couple days after my surgery. She let me lie around the day I got home from the hospital and the following day. But that evening she told me, “You can’t lie around forever. You have to get up and around sooner or later.” So the next day we cleaned out the frig and got on with life. I had my first business appointment six days after my surgery and for the most part have been feeling great.
I decided that the scarf look really isn’t for me. Besides I hate things around my neck. I don’t really have a zipper neck. (I just like the way it sounds and it reminds me of Young Frankenstein, which cracks me up.) Actually they make the incision right on one of the natural wrinkle lines of the neck and they glue the skin back together, so you can hardly tell my neck’s been cut open. Once it heals up completely it will be hard to see at all. Pretty slick.
I think the hardest thing right now is the lack of thyroid hormones. Because of how the gland controls metabolism, low thyroid production drastically reduces how much energy a person has. Try having no thyroid production! I get tired easily, which is frustrating for me because I’m usually pretty high energy. I’m trying to get the pacing down into some kind of rhythm by listening to my body, getting more sleep, eating better more frequently, and not pushing myself all the time like the Wonder Woman I think I am.
That’s meant that I’ve had to miss some fun events that I really wanted to go to and have put in short cameo appearances when I do make it out, so be patient with me. This will all resolve soon enough and I’ll be back to my old firecracker self. Just have to get the test results back to know what happens next. In the meantime, keep those positive thoughts and prayers coming.
More as the saga unfolds!
The Results are In November 2007
The results are finally in. It’s not exactly what I was hoping for.
Last Wednesday I found out that there were cancer cells in my thyroid. The cells are “papillary carcinoma follicular variant,” which is the easiest kind to take care of and has a survival rate of nearly 100 percent. So please know that there is little chance that this will do much more than slow me down, and only temporarily.
Although my entire thyroid has been removed, there is still some tissue left and some of it could have cancer cells. Since there are so many tiny nerves and important arteries in the neck, the surgeon removed as much as possible, but can’t take all of the tissue out safely.
To get rid of the left over thyroid, they use, hopefully, a single radiation treatment to destroy (ablate) any thyroid tissue and thyroid cancer cells that may have spread to lymph nodes and other parts of the body. They didn’t see any evidence that the cancer has spread, but it makes me feel better to know it’ll be gone regardless.
The reason this kind of cancer cell is the easiest to take care of, is because they’re easy to kill with radioactive iodine. Since the thyroid absorbs most of the iodine in the body, the radiation will be absorbed by the thyroid cells, including any cancer cells that are left in my body, and destroyed.
Although it was what I was expecting, it wasn’t what I was hoping for. I know that everything is going to be just fine in the long term and I’m going to make it through this. Like I’ve said all along – I’m healthy, very stubborn, and I love life too much to let this take me down.
In the short term though, it isn’t going to be much fun. Of course I’m a little scared, a little sad, and more than a little anxious about how many times I’m going to have to be stuck with needles, considering my poor rolling veins. My energy is also waning since I still don’t have any thyroid hormones, and I have lots to do!
There are three things that I’m thinking about that keeps me going.
When I was 16 my much beloved grandmother died from cancer of the colon. She was an incredible, loving woman whose life I’ve tried to emulate. It was a really hard time for me. I’ll never forget what she told me about how she was coping with her illness. She told me that she wasn’t dead yet, and until she did die she was going to live her life every day to the fullest. This has had a huge impact on my life and I’ve tried to live my life that way every day since.
My dear lifelong friend Lori Heinz sent me a card recently that said, “A year from now, this will just be another chapter in your kick ass life.” I know she’s right, because I’ve been through harder things than this and have always learned from it and have become out a better, stronger person from the experience.
The incredible love and support of the best family and friends and customers any person could dream of contributes a lot to my perseverance. I appreciate you so much and know that your love helps give me strength and courage. I’ll never feel like eating worms because no one loves me again in this lifetime.
You’re reading this message because I love you and I know you love me too. Everyone has to deal with life the best they can, so I want you to know that if it’s hard for you to reach out to me at this time, I understand. I know it doesn’t mean you love me any less.
On the other hand, if you do want to talk about it don’t hesitate to reach out to me. I think this is probably scarier for you than it is for me, especially if we live too far from each other to see each other during this time. If you could see thought you’d have no doubt that I will bounce right back. People are telling me every day that I’m looking great, in fact better than I have in months.
’m blown away at how quickly I’ve recovered from surgery and am amazed at how well I’m handling the whole thing, both physically and psychologically. Now I’m just looking forward to the next step, then onto the hormones, and upward and onward with life!
Becoming Radiation Girl Late November, 2007
In Wichita we have this great old amusement park that I’ve always loved. Although Joyland Amusement park has been closed these past couple of years, my most vivid memory of the park is the wooden roller coaster and the clicking sound the ride makes when it’s pulling the car up the first steep hill. The incline is so steep all you can see ahead of you is the broad horizon of the blue Kansas sky. The tension builds as the clicking gets louder and car takes you higher. As you get closer to the top you still can’t see how far the track drops on the other side of the hill, but you can see a sign with the painting of a guy with wide eyes and his hair standing on end and the message, “Last Warning! - Do Not Stand Up. Sit Down.” And even though I’ve known since grade school, when my friends dared me to ride it the first time, the drop on the other side really wasn’t nearly as dramatic as the buildup, the warning sign was always the scariest part of the ride for me.
As I’m preparing for radiation therapy to get rid of all the possible remaining thyroid cancer cells in my body, I’m hearing that clicking sound of that old wooden roller coaster in the back of my head. I know the buildup will be more dramatic than the actual experience, but the tension is starting to build and I’m starting to feel my hands tighten on the handlebar, preparing for that first big drop as I stop taking thyroid hormones.
As you may remember from the last chapter in my ongoing saga, I’ve been taking thyroid hormones for the past couple of weeks while I’m on a low iodine diet to prepare to take the big radioactive pill. Although they haven’t been giving me the full dose of hormones I’ll get when this is all resolved, I have been feeling pretty good and have actually been out and about a little bit. I’ve had lots of fun seeing family and friends, which has been energizing too. Last Thursday I took my last hormone pill until my treatment is complete, so my energy is about to slow back down again and the unpleasant side effects like migraines, muscle fatigue, and loss of feeling in my hands and feet are coming back – but only temporarily.
Before I saw the radiologist my Thyroid Stimulating Hormone had gone through the roof, signaling just how low my thyroid hormones had sank. With no thyroid hormones I felt like I was turning into a one-celled organism and was having problems talking, walking, and thinking. It was truly one of the scariest experiences I’ve been through. I wasn’t prepared and was trying to keep up my usual busy schedule. Although I’m not looking forward to turning into an amoeba again, I am prepared this time with a lighter schedule and lots of food that fits my diet in the freezer. This time, rather than fight it, I’m going to try to look at this as a vacation and try to take it easy. Zen into it.
The low iodine diet is tricky and was really no fun at Thanksgiving. I’ve been on it for two weeks now and hopefully I only have to be on it one more week before my treatment. Because thyroid cells absorb most of the iodine taken into the body, I have to be on the diet to starve my body of iodine so that when I take the radioactive iodine dose all the remaining thyroid cells, even the cancerous ones, will suck up the radioactive material and be blasted away. In a way it’s one of the easiest diets I’ve ever been one. In another way, it’s one of the hardest diets I’ve ever been on, especially since eating out is nearly impossible. I’ve had to cook nearly everything I can eat myself - even bread!
Look at all the the things I have to avoid with this diet:
-no iodized salt, sea salt, or anything containing these salts (pretty much anything readymade and no meat that has been injected with butter or salt water like most turkey, chicken, and hamburger in the grocery store)
-no seafood or sea products (sushi is out)
-no dairy products of any kind (bye bye my dear friends cheese and butter)
- no red dye #3 (all cola and lots of other stuff you’d never think of like gum drops)
-most chocolate! (some very dark chocolate doesn’t have milk in the ingredients – thank god!)
-Soybeans and soy products (harder than you think)
- other crazy stuff, like sulfured molasses, brown skinned beans like pinto beans, and potato skins.
I must say I’ve been incredibly good on this diet so far and am committed to stick with it as long as it takes. I want to go through this treatment one time and one time only and don’t plan on botching it up with something I can control!
Now the rest of the process just has to play out. I’ve been on the diet for the minimum two weeks now. I’ve gone off the hormones so they’ll reach the optimal level to get the treatment. On December 5th, I go to the radiologist for another blood test to check my thyroid levels. If the levels are near where they need to be they’ll make my reservation for the lead-lined room. Since I have to take medication for five days before the treatment, the soonest I’ll be scheduled is December 10th.
The treatment will be the second biggest hill on this roller coaster ride. I’ll go to the hospital for hopefully only two nights and three days to take the radioactive pill. Then I’ll stay in a lead-lined room while I flush the radioactivity out of my body as quickly as I can by drinking as much water as I can humanly take in. When the Geiger counter says it’s okay to go back into public again, they’ll let me out. After they spring me I can’t sleep with my husband Tom, or be close to my dogs, for a couple of days or they’ll absorb some of my radioactivity. Even though it’ll be quite a stretch to the budget this time of year I’m thinking about staying in a hotel for these couple of days to make things easier, less risky, and much more relaxing. After that I’ll stay about six feet away from people for about a week, then my adventures as Radiation Girl should be over and cancer cells gone.
So for now the tension is building and I can hear the clicking as I get closer to that point of no return when I take the radioactive pill. I’ll just hang on tight and ride it out. Soon it’ll all be over, and just like the roller coaster, it’ll probably all be much less dramatic than the buildup. After all, they tell me I’m not even going to glow in the dark!
A Quick Update from Planet Amoeba December 2007
My blood work looked good on the 5th and so I’m scheduled to go Wesley Hospital to take the radioactive pill on the 11th, only one day later than I was hoping for. I couldn’t be more thrilled. I’m not feeling too anxious about the whole thing anymore. At this point I just want to get it over with!
I can tell my hormone levels are off the chart again and I’m sinking back into the amoebic state, feeling like I don’t have a lot of brain power or physical reserve. It’s kind of like having the flu. I feel achy and tired and get muscle fatigue very easily. So I’m just trying to take it easy this weekend, packing and getting ready for my adventure.
Tom has been a big help during this time and has been very understanding and helpful, even when I’m not making much sense. He encourages me to rest, since I’ve never had the sense to know when to do this myself. Although he’s eating other things, Tom’s sick of my diet and is ready to go to some of our favorite restaurants. Mostly we’re both just ready to move on from this medical inconvenience.
I go in early on Tuesday morning and will hopefully get out on the Thursday, the 13th. This depends on how quickly I can flush the radioactive iodine out of my body. I’m told that I’ll be drinking as much water as I can stand. I’m planning on acting like Dean Martin at a cocktail party and constantly keep a glass in my hand.
Because of how radioactive I’ll be while in the hospital, I’m requesting no visitors. Your visit would have to be really short and I don’t want to put anyone in danger. Besides, you don’t get to put on a cool protective suit or anything.
You can call me. I’ll have my cell phone or you can call Wesley Medical Center and they’ll ring my room. I won’t have internet access during this time, so I probably won’t even bring my computer. I just plan to rest, read, listen to my I-Pod, watch TV, and make out Christmas cards. Sounds pretty relaxing doesn’t it?
When I get out, I’ll still be a little radioactive. I can’t be around the dogs very long or sleep next to Tom for a couple more days. So, I’m going to the Hillcrest Apartments where my cousin lives. I’ll stay there for the first night. They have an extra apartment the tenets can use when they have guests in town. It’s a beautiful late 1800’s building and I’ve always wanted to live there. I’m looking forward to soaking up the ambiance and spending some time with my cousin, although we’ll need to stay 6 feet away from each other.
After that I’m going to the Broadview Hotel, downtown, for a couple more days just make sure I’m safe before going home. Thanks to my Heifer sisters and everyone else who helped make this happen for me. I’ll have internet access and will have my computer with me, so I’ll be in touch then. I think by this time I’ll be up for some visitors too.
I appreciate all your love and support and I know people want to know what they can do to help me. I want you to know that you are helping me just by caring for me and being concerned about my well-being. There is no need for any kind of fundraiser or to send money. I’m fine.
I'm lucky to have really good insurance. Since I'm self employed I can have any plan I want. I went without for the first five years in business, and then my family insisted that I get health insurance. Thankfully I listened to them or I’d be in a lot of trouble now. Thankfully this isn't the most traumatic thing that's ever happened to me in my life, both financially and mentally and I will live to create much more havoc!
Keep in your heart and prayers this week. I don’t know exactly what this will be like, but I know this – when I’m out of the hospital I’ll be off the low-iodine diet and will start taking thyroid hormones! That’s more than enough reason to celebrate.
Released from Quarantine December 13, 2007
Just a quick note to let you know I was sprung from my radiation treatment at the hospital earlier today. It all went well and I’m doing fine. But, believe it or not I’m really tired, so I’ll fill you in on the adventures of Radiation Girl in the next couple of days.
The Adventures of Radiation Girl December 15, 2007
By the time I finally got to the hospital on Tuesday morning, I’d completely lost all apprehension about swallowing the radioactive pill. I’d spent the entire night listening to the sounds outside and worrying if the horrific ice storm coming our way would make it impossible to get to the hospital. I’d been without thyroid hormones and on one of the strictest diets of my life for nearly three and a half weeks to prepare for this treatment. I was determined to get it over with. I had transportation lined up, with backup plans from B through F, just in case. Although I was optimistic that the storm would miss us, nothing was going to keep from getting to the hospital.
Fortunately when it was time to leave it was just raining with temperatures just above freezing, so everything worked out perfectly. My dear friend Robin took me to the hospital and made my two hour wait for the dose a lot of fun. We entertained the radiologists and even gave them a new slogan. When he asked how I felt about taking the pill I told them “I’m elated to be ablated”. They thought that was pretty funny and said they needed to write that down. It made me wonder how most people answer that question.
Robin stayed with me while my radiology A-Team processed my pregnancy blood test (can you believe it?), and had my dose compounded and delivered. She watched as the “radiation safety” officer took the normal looking capsule from the big lead box and handed it to me with his bare hand. Then I took the pill and turned into Radiation Girl and it was time for her to clear out.
The pill I took is Radioactive Iodine 131, a therapy that is particularly well suited to treat thyroid cancer. Because iodine is mostly absorbed by thyroid cells, the radioactive iodine was absorbed by all the normal and cancerous thyroid cells in my body, no matter where they may have roamed, and are destroyed. The low iodine diet and elevated TSH levels make the thyroid cells extra hungry so they’ll greedily eat up the radiation. And poof! Cancer all gone!
Unfortunately, or maybe fortunately, the adventures of Radiation Girl are not all that exciting. It’s kind of like solitary confinement, but at a hospital, where they come in to check vital statistics just when you’re dozing off. But, the mission of Radiation Girl is of utmost importance and a job I took seriously indeed.
My mission was to flush the radiation out of my body as quickly as possible. To do this I was to drink about one hospital picture of water an hour and go to the bathroom a lot. I do mean a lot. (I found out later that adds up to about two gallons of water a day.) Of course, the overachiever that I am, I think – “If one picture an hour is good, two pictures will be even better.” So for the first three hours I pumped water like a mad woman until – uh oh – I started feeling like I was going to spew toxic water. I had no idea that drinking too much water could make you vomit. Fortunately there were no toxic spills for the nurses to clean up and I just laid back and took a little nap to let the water level go down a little.
Another part of the mission is to suck on lemon drops. This helps with the radiation flush too. Since the radiation is attracted to the neck, the site of leftover thyroid cells, sucking on lemon drops makes the salivary glands work harder and keeps swelling down in the glands of the neck. If I ever have a lemon drop again, it will be too soon.
An important part of being Radiation Girl is to safeguard the world from exposure to her radiance. To help guide me in my mission I was assigned a “safety officer” who helped me protect the innocent. The room had paper runners for me to walk on masking taped to the floor around the bed, and to and in the bathroom. The hospital bed had a custom designed headboard made of a huge lead shield so I wouldn’t zap the poor unsuspecting person in the next room. Another big lead shield was set up between my bed and the door so people could stand in my room, six feet away, and be protected.
There are many interesting rituals to perform when you’re Radiation Girl. I could only eat with disposable utensils on disposable plates. After I finished eating I had to flush any leftover food that I could down the toilet. (And believe me I couldn’t eat most of it. The hospital isn’t as imaginative with the low-iodine diet as I was and it was nearly inedible.) Then I threw everything I touched away in a double lined trash bag that the hospital stores for nine months until they’re sure the radiation has dissipated before they throw it away. I began to worry about just how much water I was wasting since I had to flush the toilet twice each trip, with an average of about 3 trips per hour.
My brave “Radiation Safety Officer” came to visit twice a day to measure how radioactive I was. When my levels dropped low enough, this was the guy who would send me home. I held a measuring tape and he measured my levels at three feet, six feet, and then out in the hallway. Although it was tempting to nap a lot, I stayed busy drinking water and sucking lemon drops and by the next morning I was only half as radioactive as the day before. I looked at it like a marathon and kept drinking a more reasonable pitcher per hour the second day. On the third morning, which was Thursday, my levels were low enough and they sprung me!
After I left the hospital I still had restrictions. I couldn’t sleep with Tom for a couple of days. I have restrictions until the 19th about how close I can be for how long with people under age 45, pregnant women, and children. Happily I don’t have restrictions on my diet anymore and can eat anything I want! Because I was concerned about being around other people and because I was just exhausted, I spent the weekend hiding out and relaxing. It was glorious and just what I needed.
Thanks to my cousin Susan I spent the first night in the guest room at the Hillcrest, a beautiful Tudor-style brick high-rise, built in 1927, that is divid