Thyroid Cancer: My Personal Journey
Sometimes humor is the best way to fight the tears.
Most people who know me, know that I’ve had cancer. It’s hard to hide a giant scar across your neck. I wear my scar proudly as a sign that I have fought this beast and won, though sometimes I do try to hide it from small children. A couple months ago a little girl looked at me and then asked her mother who tried to cut my head off, I felt bad.
It all started with a fall down the stairs. One thing led to another and through a series of doctor visits I ended up finding out that I had a lump in my throat. There were two lumps actually, one right in front and one on the right side of my neck. The ironic thing is that I have always had a phobia about things touching my neck, I blame it on all the horror movies I watched growing up.
I was sent to get an ultrasound, which is another word for torture in my book. The outcome was that there indeed was bumps in my neck, and we weren’t just imagining seeing and feeling them, what a relief! The neck bumps were now being called thyroid nodules, though I continued to refer to them as neck bumps because my personal terminology is funnier than medical terminology.
So now that I had these nodules the next step was to get a biopsy. “No problem” I thought. Little did I know what this biopsy would entail. They didn’t knock me out, they didn’t even numb me up or give me anything to reduce the pain. I sat in a room, on an exam table while a nurse held my hand and the doctor stuck the longest needle I have ever seen into my neck, right into the lump in my throat and then started shaking the needle around. After the third time I thought I was going to pass out. I was biting my lip and tears were rolling down my face. The doctor let me take a small break and then did it three more times on the other lump. At least it was over, at least now we would know.
Two weeks later the results were in. “Inconclusive”
I was referred to an Endocrinologist or in other words, someone who actually knew what he was doing. Lucky for me, he wanted to do another biopsy! At least this time he promised to numb me, although it really didn’t help much. The first needle I barely felt, the second hurt a little the next four were terrible. The best part was that after he finished the six he asked if he could get some more samples just to be sure. I was hurting very badly but I told him to go ahead and take what he needed because I never ever want to go through this again.
He took seven more, and two weeks later the results were “inconclusive“
The Endocrinologist suggested I see a surgeon. He said that even if the nodules were not cancer they would likely keep growing and it would be better to get rid of them while they were little instead of waiting until they were enormous and I looked deformed. My general doctor disagreed and said that I should just ignore it and I’d be fine. I decided to trust the Endocrinologist.
My surgeon was a very adorable and flirty guy. He told me that I had a Hollywood smile and that my skin was so nice he was going to hate to have to cut it. He didn’t however like that I refereed to my surgery as him “ripping my neck guts out”
Perhaps that is why I had crazy nightmares about the surgery before it happened. I remember dreaming that I had to perform my own surgery because the doctor was busy, and halfway through I couldn’t do it anymore and I was running around the hospital bleeding everywhere looking for help.
Never-the-less it happened at 7 am on October 7th 2008. I knew that they were going to cut my neck open and remove the nodules on my thyroid. I also knew that once the nodules were removed they would send them to pathology while I was still asleep and open. It would take about an hour to check to make 100% sure there was no cancer. I was going to lose a bit of my Thyroid but the remaining portion would adapt to make up for what would be missing. In the very small chance that pathology does find cancer in the nodules, they would remove my entire thyroid. At 3 pm a nurse in the recovery room woke me up. “Crissy, wake up” she said as I opened my eyes. Once I was looking at her she told me the time and then said “The surgery is over, you did have cancer and I am going to take your catheter out now.” I think that was probably the worst way I have ever been woken up in my life!
That night in the hospital I was miserable, due to a glitch in the system I wasn’t allowed to have pain meds until morning. The next day as I saw the doctor I begged him to let me go home. He was concerned but agreed. He only had to remove the drain tube from my neck. Even though it is a drain tube I refer to it as my neck juice tube. I wasn’t really prepared for this because I had thought the tube was only inside my neck perhaps a couple inches. When he pulled it out, I felt it very deep inside my neck. My mother was in the room and she explained it like the doctor was a magician pulling scarves out of his sleeve. She said that he just kept pulling and more and more tube came out.
After the surgery
Right away I was put on a temporary thyroid hormone replacement drug called Cytomel. The reason they use this is because there can be no thyroid hormone left in your body when you take the radioactive iodine and Cytomel stays in your system the shortest period of time. A couple weeks before the dose of radio-iodine, I had to stop taking the Cytomel and begin a low iodine diet. Your thyroid is the only thing in your body that absorbs iodine so by giving someone radioactive iodine pills, it is supposed to destroy any trace of residual thyroid or thyroid cancer left in the body. The low iodine diet wasn’t bad, the worst part was not being able to take the Cytomel.
Without a thyroid, gland I was now considered to have hypothyroidism. Those with hypothyroidism know it doesn’t just make you a little tired. Imagine being so tired you are barely able to function, your body aches and you can’t concentrate on anything. You are constantly freezing and your skin dries out and your hair starts to fall out and you are just completely depressed. It’s very difficult, especially when you have a pill right next to you that can help end these symptoms and make you feel more like yourself again. I made it though, and on December 17th 2008 I was given my dose of radio-iodine and told to stay away from people, especially children, pregnant women and women of childbearing age, for the next week. Also I was told not to get pregnant for 6 months. I laughed at the last one because I didn’t think I’d ever be able to have children after trying for many years with no luck.
Two weeks later I was pregnant!
Of course I didn’t know for about six weeks later and it’s not really relevant to the story except that it caused great worry. I was told right away by the first doctor that I should terminate the pregnancy. There was no information online about getting pregnant so soon after a radioiodine treatment. Finally, my Endocrinologist got together with my nuclear medicine doctor and a radiation safety officer and they all decided that the level of radiation that was still in my body at the point when I became pregnant was not enough to harm the baby. Finally, some fantastic news after all I had gone through!
After having cancer, you have to get screened for it often to make sure it doesn’t come back. With thyroid cancer, this is checked through a blood test. It was almost a year later, November of 2009. My daughter had been born but due to complications was still in the hospital. I had a routine blood check and visit with my Endocrinologist. Things were finally, starting to get back to normal. My baby was doing better and might be released from the hospital soon, and I was feeling much better. Then he told me the blood test results. The news wasn’t good, though because of everything I had been through with the pregnancy and the stress of having a sick baby, it may have messed up my blood levels. He recommended I get an ultrasound on my neck just to be sure there was nothing going on.
I had an ultrasound, and again it wasn’t fun even though I was becoming more used to people touching my neck. After the results were in my Endocrinologist informed me that I had an enlarged lymph node on the left side of my neck. He said it was right at the line where they normally wouldn’t pay attention to it but because of my history and my blood levels he wants them to do a biopsy. Not again!
This biopsy had to be done at the hospital because it was on my lymph nodes instead of just a thyroid nodule. They numbed my neck up, however it didn’t do much to ease the pain. There were about six people in the room with me though I think some were just there to yell at me to stay still and hold me down. At one point a doctor asked me if I was crying because I was in pain and when I told him yes he told me I was probably just mistaking pressure for pain. No, it was pain.
At least when the results came back they didn’t say inconclusive. No, this time they said cancer.
This was different than last time. This time I had my daughter, I had something to live for. It was also a little more complicated so I couldn’t go back to my flirty surgeon. That was fine with me because I did not want to go back to that terrible hospital again. My new surgeon was female and she was very intelligent. When I complained that my head was going to fall off if they keep cutting my neck she assured me that I wasn’t the first person to fear that! I was extremely confident in her abilities. She explained that they would have to reopen my old incision and also cut more up the left side of my neck to remove the area surrounding the cancerous lymph node.
My surgery date was help up due to me developing a blood clot in my right leg which also led to a pulmonary embolism in my lung. This happened not only because of the cancer but also because of the birth control pills I was taking.
Because of the clot I was on blood thinners and this posed a danger of bleeding too much in surgery. In order to rectify this situation I had to stop taking my blood thinners a week before surgery and instead inject myself twice a day with a Lovenox shot. If you have never had to inject yourself with Lovenox before let me tell you what it is like. The needle is so dull it feels like you are trying to stab yourself with a spoon and then inject yourself with fire. I am diabetic, and while I was pregnant I had to take insulin. I am used to giving myself shots and trust me, this was nothing like that!
On August 25th 2010 I finally had my surgery. I did make it out of surgery obviously, and the only problem was getting me to breathe again afterward. After they woke me up I had to stay in recovery for a long time because I kept falling back asleep and I would stop breathing. I finally managed to get the hang of it and was sent to my room. This hospital was much better than the last one and they made me feel a lot more comfortable. I got to see my incision right away and it didn’t look as bad as I had thought it would. I was surprised though that they had to make a separate incision for my neck juice tube, whereas last time it was in the same incision. This hospital was great though because they gave me a pretty little bag with a long strap to hang around my neck and hold my neck juice container in so that it wouldn’t get in my way.
The surgeon explained to me that they ended up taking 7 lymph nodes out of my neck and after testing them, two came back positive for cancer.
I stayed in the hospital for a few days because they had to make sure my blood was thin enough to release me. For some reason it took a very long time to get my appointment for my next dose of radio-iodine. It wasn’t until December 1st and my thyroid hormone levels dropped so low that I became more depressed than ever. One of my doctors even commented that after looking at my blood levels he is surprised I was able to make it to the hospital that day.
Hope is a great thing to hang on to.
I wrote a poem, trying to explain how I felt at that point. The poem is called Dreams and Disease and it is about waiting to be cured and dreaming of the day the cancer will be gone they way normal people dream of falling in love.
Embraced infant-like nighttime naps
As was brought forth fantastic fantasy
It was heavenly happiness
Dreaming of my love like my love was here
Deception roused me, if only I'd known
Waking up wouldn't have been an option
Disorientation and fatigue are symptomatic
The perfect pill that heals can currently kill
Waiting for the poison
Worse before better, near death before life
Slow decay in the brain, forgotten feelings
Slight sight sends my sleeping mind deeper
Welcome delicious darkness it's been too long
Enter me and induce the inability to feel
Exhaustion defeats emotion
I fear mornings wake as descending drift I take
My dear dream disappears, he is nowhere near
Married to misery, maybe this was meant to be
I did start to feel better after my radio-iodine treatment this time. The worst part of it was that I had a child this time and I couldn’t be near her for a week. It broke my heart not to see her. They also gave me such a high dose that it fried my taste buds. It took about five weeks before I could taste things again. So far, I have had one blood test and it showed positive results. Part of me is optimistic that it really is gone this time, however there is still that little part of me that fears this will happen again, and again and they will have to keep cutting off pieces of me until there is nothing left.
I think anybody who battles cancer fears that it will come back, so I don’t feel like I am crazy for being afraid. I know that I am lucky. I had the most treatable and the least reoccurring cancer. Twice. It’s a lot to go through, but so many others have to go through so much more. I've seen so many suffer through cancer, from breast cancer to brain cancer. When I think about their strength and bravery, it gives me courage to keep fighting my own fight. I’ll do it for my daughter, and for all the people I have known who fought this monster and lost.
Its been a couple years since I wrote this article and I thought I should update my story for anybody else who is interested in my thyroid cancer journey.
Well my second surgery was not the end of the cancer unfortunately. In November of 2012 I had another surgery to remove the lymph nodes on the right side of my neck. After the surgery I was told that out of the 22 lymph nodes removed, none had cancer. One small one that was taken from the middle of my neck however did.
I haven't had another dose of radioiodine yet. We were waiting to see what happened. My levels fell at first, then rose. It actually got to the point in August 2014, where my doctors told me they wouldn't blame me if I decided to give up and stop fighting. I almost agreed to do just that.
But then I gathered my strength and decided not to give up. I had a new found faith and my next test indicated the cancer levels actually decreased. This was my incentive to definitely keep fighting. Now I am waiting for approval for a drug called Thyrogen. This is going to help me prepare for my next dose of radioiodine and hopefully this will end up being much more productive.
Time will tell... and I will update once I have more news!
Shortly after I wrote this, I got the call from my doctor that they were ready to give me another dose of radioiodine. There was a hold up because somehow the hospital messed up my records and suddenly listen me as being 20 years younger than I was. Because their records showed I was under 18, they were waiting for my parents consent. Once I explained that they were mistaken, the ball got rolling.
As I write this update, it is currently 2019. I have not had any procedures since the last round of radio-iodine except for ultrasounds and PET scans. So far, nothing has changed much. The radio-iodine did not get all of the cancer but as of now it all remains fairly stable.
Again, I will update this ongoing story when I have more to update.
A sincere thank you to all those who read this article.
I believe many people are led tot his page because they are experiencing this cancer or concerned for someone else who is. We all have our own individual struggles. Just because my cancer is still around doesn't mean it will be the same for someone else.
But I do appreciate all the comments and support. It is nice to not feel alone.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2011 Cristina Cakes