I knew our time together would be short. See, I found out at 14 that I had a blood mutation that gave me a very high chance of having to live without you, and having to deal with medullary thyroid cancer. Now when I say short, I mean 17 years. That’s all the time we had. And then you became a host to what we will from here on out call MTC, or medullary thyroid cancer.
Then came a plot twist, I was a pregnant 17 year old. My son was already baking and I could feel my love for him growing by the second. Oddly enough, I wasn’t scared of MTC. I was upset, and worried about my baby and about the scar that would be left on my neck. But not of the danger. They told me that I needed to remove you all together and I am sorry to say that I did not care. I told them to take you, and so they did. On August 4, 2011 I underwent a total thyroidectomy (which was also at 18 weeks gestation for my little baby)
The day I went in was so surreal. Almost as though it wasn’t really happening. There wasn’t a lot of fear, and a lot of the people I loved were there. But then they gave me this drink, and told me that it would help me sleep for the surgery and I still wasn’t scared. Just sleepy.
I remember the moment I became absolutely terrified, and not for myself. It was for my baby. My new, darling, all around sweet baby boy. It happened when we entered the operating room. Everything was silver, and it looked dark, too dark for there to be any real accuracy. Then they pulled down this wonderfully bright lamp and I felt the tears welling up in my eyes. I began to ask questions so fast they couldn’t escape my mouth quick enough. Not quick enough before I fell asleep from the medication. I remember saying, through my last quieted sobs, “Is my baby going to be ohkay?” over and over in different ways until my voice muted, and the surgery technician looked down at me and very softly said, “We’ll take care of him.” My eyes closed, and I was sedated.
When I woke up Dr.Rothman said everything had gone according to plan. They began to try to find my son on their Doppler, but they couldn’t. So I offered my doppler – I guess I was more scared than my conscious led on since I packed it. They were so surprised that I had one, but they found him, and he was perfect.
I remember crying when I first saw the incision. Across my smooth, alabaster neck, there was an angry looking wound and in my mind I blamed you. You, thyroid, were a traitor who was ravaging my wonderful skin and endangering two lives. But that subsided. I remember my family and fiancé visiting, but I don’t remember being frightened past that point. The worst part was over and I was going to leave on the 5th. Only a one day stay.
When I was discharged they told me to return if I felt any tingling in my hands, feet, or face. Around a week later I returned and it was apparent that your friend, the parathyroid, was not too happy about you being taken. It stopped working, because it just couldn’t live without you.
I stayed for two days in the hospital while they were caring for me, and then they put me on calcium and made sure my levothyroxine was at a good level.
I STILL was not scared.
At this point, all that was left of you was an empty space and an angry endocrine gland that missed you.
Almost three years later….
My son was an incredibly healthy two year old boy and your space, to my knowledge, was still empty.
I rushed into the hospital on March 15th, 2014. I began to walk towards the doors but my muscles wouldn’t cooperate and my fiancé had to park the car, so a wonderful bystander got me a wheel chair. The pain was excruciating. I could feel every single muscle twitching, aching, burning, and a nonstop contraction bringing my limbs and lips inwards, as though my body was shrinking inside of itself, turning me inside out and freezing me into a statue. I cursed and I yelled for HELP!
It was the worst pain of my life, and these people were walking in such a nonchalant manner across the ER floor that I wished that just for 5 minutes they could feel this pain. This pain that I wasn’t sure would ever end, and in my agony ridden mind, would lead to my death. I felt my breathing becoming more labored, and my heart felt like it would jump out of my chest. Then I was given Benadryl to calm down, and it made me sleepy, but the pain. The pain felt as though it would rip me apart.
After more tests, and cries for help, the doctor came in. She informed us that my calcium was very low, dangerously low at a 5.4 and that my parathyroid was still not working. My muscles were threatening to stop: and my heart and diaphragm, although still functioning, were at risk. They admitted me for 5 days and after a yo-yo of electrolyte imbalances I was informed through an MRI that SOMETHING was growing back in your place. I left the hospital on March 19, 2014.
I thought I had accepted that my cancer had returned, but my dream weaving fiancé helped me hope for something else – anything else that could possibly be there. I worked out a leave of absence from school and stopped working. It helped. I felt calm and needed to focus on myself. AHCCCS was giving me the run around though, and for two weeks I was without blood work.
I returned to the hospital that I had left two weeks prior on what other day than April Fool’s Day, 2014!!! I had been feeling very weak, no appetite, nausea with every step, and an overall discomfort that was dragging me into a confusion and sadness that I could no longer sustain. My calcium this time was incredibly high. 16.
Now it is April 2nd, 2014 and although my calcium returned back to normal this morning, there’s another thing. MTC was back. This time, without the “T”. Without you. I can’t blame you now. It is in my blood, and I miss you. The hospital endocrinologist came in and told me that my calcitonin levels were elevated high enough to prove to him that the MC was back. All you need for a positive diagnosis of this is a result of 35-44 when dealing with calcitonin. I was at 38.4.
I called my dream weaver and let him know. We got in a fight about how I felt I needed better support, but he was so scared and I sounded so ohkay. I didn’t sound worried although I felt it. He felt like I was giving up, like I hadn’t given it a thought and had detached, like I always do when it comes to my health. I felt like I was handing it right. The truth is that this small argument did me a great service. It gave me a reason to cry and let all of the fear, sadness, grief, and overall hurt take control. I can’t remember if that took 10, 20, or 30 minutes. But he walked into my hospital room shortly after and proceeded to make me laugh so hard that I forgot for a moment and I felt clear. Not detached at that point.
The endocrinologist let me know that he would get an oncologist and a surgeon to do a consult with me. That I had two options and one was to stay for at least another night in order to get a complete series of tests. Tests that would tell me exactly how big the MC is, and if it had metastasized. I could speak with a surgeon here and have the surgery soon, or if the AHCCCS application is finally accepted – option number two would be to call Dr.Rothman for the second exploration into your old home.
It is still the night of April 2nd. But I feel the fear creeping back. I can feel the worry and all of the stress. But this time I am feeling it. I was younger the first time and so much was going on that I don’t think I could have handled it any other way. But now that I am a few years older, I can see that I made it harder on myself. I didn’t process it; instead I just worried about my vanity. I never thought that MC would come back.
Now I am worrying about the things that matter:
- Being a mother, a fiancée, a sister, a daughter, and a friend.
- Sticking around and fighting through everything going on to not only conquer this, but to become stronger through this.
I am sorry you had to be sacrificed, Thyroid, but I will stay here and finish the fight for both of us.