Tomorrow is the last day of September. It was Thyroid Cancer awareness month but I only saw a few articles related to ThyCa. I have to tell you, just because there’s a good survival rate for some patients, it doesn't mean Thyroid Cancer awareness should be non-existent. There are way too many of us that are fighting for our lives each and every day. Thousands have lost their lives- five this week alone. Don't ignore this. It’s quite sad when family and friends will change their Facebook profile page for breast cancer or another cancer but not for ThyCa. When someone texts me or messages me “I am thinking of you.” or “You’re so inspiring, you’re the strongest person I have ever known,” I wish they would also help spread awareness.
So, there is only one day left, but I will use this day to share my story.
It has been way too long since I last blogged. Life just flies by especially when life just gets hectic. I haven’t been feeling well for a long time. The fatigue, exhaustion and the neuropathy pain gets the best of me. I sleep pretty much my entire day away.
Back in February 2016, my amazing Endocrinologist, who is not an Oncologist, was at loss for words why I was not absorbing the medications he was giving me for a year. He has changed my dose several times in the last year and was just stunned how my TSH spiked insanely high. He didn’t know what to do for me. He had never ever seen this in his entire career. I was a rare one. Lucky me, I had to go find another Endocrinologist for the millionth time. Something I dread doing. It is exhausting. This happens a lot, believe it or not. My last Endocrinologist was my 13th Endocrinologist in 4 years. I lost count after the 10th one to be honest. I had to go back to my labs to figure out how many I have seen. I couldn’t move, could barely breathe, and my entire body was swollen. I felt like a train hit me.
When April came around, I finally saw a new Oncologist/Endocrinologist. Since this was a new a new doctor, I had to do a long consult, which is exhausting. You start from scratch,you have to remember detail to detail. I swear I should have written a book by now. I couldn't remember much. It’s been a crazy 5 years. I don't understand how doctors expect you to remember every single detail. This doctor decided to retest my thyroid labs again. She was going by what my last Endocrinologist sent her. When she received my blood test results, my TSH was 185. The highest it has ever been. She was baffled by the fact that my labs increased so dramatically within 4 weeks time. I was put back on Tyrosint, as well as Cytomel. Still, nothing was absorbing even a month later.
I started to get weaker and weaker and heavier. I slept till 7pm almost everyday. I honestly couldn’t keep my eyes open. I figured that it was because my TSH was at such a critical state.
In May 2016, I had blood done locally instead of going all the way to NYC for blood work. Which would of been a 2 hour bus ride just for 10 minutes. Which would of kept me in bed for two days so I decided to make it easier for myself. Dr. S, as I called her, called me within 2 days, "Ms Nicosia, go the ER immediately you are in critical condition, you need Synthroid through IV immediately otherwise you are going to end up in a Myxedema Coma. You are going to die if you don't take care of this immediately. Your TSH is 275. No wonder why you can’t walk or stay awake. I don't even understand how your alive right now."
I was so done at this point. I just wanted to give up and die.
Finally after 10 hours to get a bed I met a nurse that was amazing. She referred me to a wonderful Endo/Oncologist after I was admitted. Labs were drawn and I was told by my doctor I was in a critical state and how within a day or two I can end up in a Myxedema Coma. For those of you that don't know, Myxedema coma is when someone with severe hypothyroidism’s organs start shutting down little by little. I was severely hypo without a thyroid. My body was “crashing” as the nurse called it. I had to have a catheter placed because I couldn't even urinate anymore. I was so traumatized and embarrassed by this entire situation. MY TSH was 290, keep in mind with no thyroid. For some reason my body stopped absorbing Thyroid Hormone. It took a week being hospitalized to figure this out.
I was getting my Thyroid hormone through IV after a long lonely stay at the hospital. The IV was working. My new doctor and her team suggested I have a PICC Line placed in my arm. I went home with a PICC Line placed and home care would come daily to clean my PICC line, change the dressing and give me medication safely through IV. For a few months I had the PICC Line in until it blew. The reason why my line blew is because they don't last long. Early home came visits got to be old and I was tired of it. Back to the ER I go, as I needed medication.
The next day, I saw my doctor and she suggested a port instead. I was so scared for the surgery to have the port placed that I blacked out. The doctor told my family he has never seen so much fear in someone’s eyes, and he does it often. I guess after awhile you try to hold on and fight and not give up but then reality sets in and your like “oh crap this is really real”. I started to have a breakdown because I’ve been sick for so long. Thank god the doctor knocked me out fully. Two months go by and I am still hurting from the port area. It was quite painful. Funny thing is, I went shopping days later with my Mom and a woman noticed my scar she asked if I had a port placed. I said yes. She then said “that was the most painful surgery I have ever gone through and I had a double mastectomy.” She explained these surgeons don't tell you anything!
It took about a good year for my labs to lower. It was still high but the labs were looking promising. So unfortunately, home care came every week to clean the port area, then sticks a needle in my chest. I screamed for my life. I didn't know there was port cream! I blacked out from the pain. Then one of the nurses who I didn't care for (that never came back) was so nasty and she tried to stick me 6 times. I thought I was going to die.
These days, I no longer have my port. I had it for almost a year until it got infected three times. I had surgery to remove it just before I moved five months ago. I am healed with nice scar tissue. I get my meds via butterfly IV. My boyfriend infuses me everyday only because he is a certified phlebotomist and was already trained in school. He knows what he is doing. We rotate arms. My veins are feeling it now with Hematomas sometimes. Life gets so busy and stops me from going places without him. I do not want to have to rely on someone for the rest of my life. I can’t do it myself. A home care nurse will not come here daily to do that. You can’t have a high dose for the week in one shot you will end up in the hospital. If you have such a high dose you will end up having a massive heart attack. So that option is out.
I’m sad I left my amazing New York doctor but I had to leave New York. I will forever be grateful for her and she knows it. Since August I have been on IV for 3 days and Tyrosint for 4 days. I did a malabsorption study at the cancer center. It was a long 8 hour day. I have a malabsorption with Synthroid. I am also allergic to generic Levothyroxine. As of right now my labs are a wreck again, as it seems like Tyrosint is not working either. Severely Hypothyroidism on top of all my other medical issues stinks but I am being monitored closely. I will have an update next week.
I don’t know how I got this far in life.
Sometimes, I often think I’m just having a really bad long dream that I will wake up from and be a normal healthy woman. NO cancer, no peripheral neuropathy, and no wheelchair. But then reality sets in and you snap out of it and realize you’re sick and tired of being sick and tired and tired of being poked and prodded constantly. But for some reason, after all this bullshit with doctors and endless ER visits you still don't give up. You keep fighting for your life. Remember never lose site of you who you really are. Sometimes, I do. This battle gets exhausting for sure but I think of all the good that has come out of it. Meeting amazing people who became my really close friends that get it.
Awareness is incredibly important to me. I spread awareness in hopes that there will be a cure someday for everyone. The more awareness that gets out the better. Research and funding is the key. By spreading more awareness about Thyroid Cancer you can save your life and someone else’s. Please take a moment to visit Thyroid Cancer Survivor’s Association at www.thyca.org learn more about this disease. Check out the free materials that are available all year long! There is no excuse to not spread awareness when you have free resources at your finger tips. Please visit: Thyca.org
to learn more.
Have you been affected by thyroid cancer? Share your experience in the comments below?