As a Thyroid cancer patient, your blood work has to be .1, which is considered undetectable and helps keep cancer from spreading. Just like that, during my fight with the cancer, my thyroid-stimulating hormone (TSH) level was close to 300, and in May 2016 I started to get sicker and sicker. I couldn’t go to the bathroom because my ovaries were shutting down. I would sleep till 5pm no matter what. From showering to eating, I was exhausted.
I couldn't keep my eyes open for more than an hour. I could not function.
For months we couldn't understand why I wasn't absorbing the thyroid hormone Synthroid normally. At the time, my old endocrinologist, who specializes in Metastatic Thyroid Cancer, advised me to go to the ER to receive Synthroid through IV.
I was hesitant to go but had no other options. My levels kept getting higher and higher. Two days later, I finally went. Many doctors and nurses knew my face; "It's you again." "What are you doing here now?"
My mother came with me and we sat there for hours. Finally a doctor comes in and I explained to him my endocrinologist's request. All of a sudden, this new doctor starts screaming at my mother and I that the request didn’t make sense. Unfortunately, here in the US thyroid medication does NOT come in any liquid form. I wish every person working there could hear him because I couldn’t believe it was happening. I was sent home and that was that.
Days later, I ended up going to a different ER this time. I had to have a catheter put in because I couldn't go to the bathroom. It’s so embarrassing. The doctors were so caught off guard that they had never seen a TSH this high in their entire medical careers. I was admitted, for over a week. I felt like I was in prison. Surprisingly I actually fell asleep for the first time in a hospital. It’s hard to sleep in the hospital because you are always being poked for meds or vitals signs. I slept for so many hours that many doctors thought I was dead.
I was told that I am lucky to be alive. My bladder was shutting down because I almost went into a Myxedema Coma. At least I knew why I couldn't stay awake. I was also swelling up so bad that I couldn't fit into my clothing. The entire team discovered I have a malabsorption issue with medication and not just thyroid medication, but including pain meds, which sucks of course. So, that is why my TSH was spiking for two long brutal years I was dealing with this and not one doctor could figure it out. I was so happy to finally have an answer. After giving me Synthroid through IV for a few days, my labs starting to go down finally.
A PICC line was put in my arm temporarily. To have something in your arm and to have it covered while you shower was a lot of work. I could barely bend my arm, it was in the worst spot ever. Home care nurse came in weekly to change the dressing, clean the area, etc. I would infuse myself daily using SASH protocol (SASH means 2 saline syringes, Heperin and alcoholic prep pads). SASH is only used for IV therapy.
This is the process I do everyday in the morning:
Scrub the clave for 30 seconds
Scrub the clave again
Administer the medication slowly in 5 minutes time. If you push it fast, then your heart races.
Scrub the clave again 30 seconds
Scrub the calve again 30 seconds
Because I like many others are active with their arms, my PICC line only lasted 2 months before it blew. My medical team decided the best option for the rest of my life would be a PORT.
Surgery for the port was traumatizing
for me. Later a home care nurse came to access my port, or put the needle into the port. I did not know it was going to be extremely painful. Tears were streaming down my face. I had no idea at the time that there was numbing cream. She didn’t access me correctly. Four days later, boom, I landed back in the ER. My site was swelling up and burning every time I was infusing myself. Flushing isn't supposed to burn. Now I know. I did not have burning or swelling with the PICC.
The radiologist came in to flush the port with saline and I screamed for my life. The site was so bad that he had to take the needle out at that point. He was upset that the ER nurse didn't tell him to come access it while I was sleeping, which is usual practice. Plus, it was in the wrong spot which caused my skin to inflame. I didn't know this. That’s why I waited until it got worse days later. I thought maybe it was normal because it’s a new site. I was wrong.
Days later, I went back to have a port check. The techs numbed the area and we waited 30 minutes for the cream to work. It was pretty painful but thank god the X-ray turned out to be fine. The radiologist had to check and make sure the port was in the correct spot and it was. The radiologist then called the home care nurse line to make sure the nurse never came to my home again. I felt so bad because people make mistakes, but the radiologist said a nurse needs to know what they’re are doing and that I could have received a staph infection.
With the port, it's the same protocol as the PICC line with SASH. Nothing is different. Life is so much better. It took nearly 3 brutal months for my labs to be stable. Finally, my TSH is stable at .1, where my labs should be. I will continue to infuse myself everyday.
I am so grateful for my endocrinologist team and for my amazing doctor- she knows that. For the first time in my life a medical team actually cares
about me and that’s shocking to say. I have to tell you though, it cost thousands of dollars weekly just to infuse yourself. This is something I didn't want but it was either life or death.
When these things happen I remember that above all I am alive. I get to see my nieces and nephew grow up and I'm okay with the help of pain meds. Those things put everything into perspective and make me feel okay. I love being okay.
Have you ever been told that you have the "good" cancer? Share your experience in the comments below!
Photo courtesy of author.