On March 16, I paid a visit to see my Endocrinologist because of my sonogram results. My “cancer marker” is 99.9 which is not good. Dr. M had to increase my dose of medications. I hope this new dose of meds will lower my “cancer marker” within the next two months. For the last six months my levels have not been stable. We have no idea why that is the case. We tried several different doses over the last several months and it turns out I am only absorbing half of my medications, which is not a good thing.
As per the conversation that I had with Dr. M he suggested to me to go to my surgeon at Sloan Kettering before I have a Fine Needle Aspiration Biopsy done. My Endocrinologist is concerned and wants to see what my surgeon thinks before going any further.
Dr. M is really concerned because I have a complicated disease. Not only is he worried about the cancer but he is also concerned about the long list of medical problems I have. My Endocrinologist thinks all the lymph nodes that are in the neck area are cancerous as he felt them after I drank a cup of water. My neck is very sensitive to touch. The first priority right now is figuring out why I have so many enlarged worrisome lymph nodes that did not appear on my last sonogram which was December 2014.
The only thing I can do is take it day by day at this point. I’ll see what my surgeon says. My Endocrinologist is also concerned because of the severity of my pain. For months now, my neck has been hurting me but now I can’t tolerate the pain anymore. My entire neck swells up where it leaves me in a choke hold position for a good half hour.It is very scary and extremely painful. To the point where I cannot eat or swallow anything, and there are many times where I gasp for air. I have to rub my neck with my palm for awhile for the swelling to go down.
My Endocrinologist said I sleep so much because my levels are off the charts. I can sleep forever. If you do not wake me I can sleep a good 18 hours straight. Then I get up to shower and then I am exhausted from just showering and getting dressed. The fatigue is all part of having “Thyroid diseases”. Unfortunately, I have every Thyroid disease. Most days I can’t keep my eyes open. Gatorade is the only thing that keeps me awake. Yet my family doesn’t believe me that gatorade can actually keep you going. Well it does. No matter what I do I am exhausted. I have had this severe fatigue since I was 18 years old. It has been a full decade! But with cancer and so many other health issues that I developed after cancer, it is a never ending battle. It is so nice to finally have an answer about the swelling in my legs and feet is all due to having thyroid disease as well.
I get frustrated with a limited quality of life because every disease is taking a toll on my body. I have to say it is extremely overwhelming at times. I don’t know how I do this. I don’t know how I made it this far. But, I continue to fight like hell.
I truly believe if I wasn’t misdiagnosed I wouldn’t have half of these medical problems. Unfortunality, you cant turn back time, as much as I want to. I often dream of giving my boyfriend and family members one illness each. Just to have a break for an hour. Everyone says “I wish I can take your pain away.”
I. JUST. WANT. TO. FEEL. NORMAL. But I know deep down I have to find my new normal. I have to learn how to adjust to the new normal. But to me I feel like there is never going to be a new normal. All of this is getting extremely hard especially when you are young. My problem is I don’t know how to move forward either. I am scared everyday of my life. I only go day to day. I can’t schedule things in advance. My body doesn’t work that way. Yet, I still get so frustrated if I can’t tackle every small task. For Example: If I shower then I can’t do the dishes or fold the laundry for a few hours. My body feels like 100 years old, yet I am turning 30 in November. My great great Aunt who is turning 100 in April is healthier than me. NO KIDDING!!
I am thankful for my new endocrinologist. His concern means a lot to me. He is awesome. It took more than 2 years to find this man. I am so grateful for him.
Last night, I received a text message from my sister. My amazing 5 year old niece Ava had to do Homework and choose me ( Aunt D). She did this all by herself. Tears streamed down my face when I received this message. I was speechless. Kids these days are so smart. They know everything that goes on. This picture means so much to me. I can’t wait to get the hard copy so I can photo copy this to frame it. I fight harder and harder everyday for my nieces and nephews. I would be lost without them.
From time to time Ava draws pictures of me in my bed on sticky notes. So, here I am once again in bed where she knows she can always find me. LOL.
Isn’t this picture amazing? I love it! Broke my heart and made me smile.
Having this blog to document my day to day life helps me keep track of whats going on. Because to be honest, I been through so much I cant keep track anymore. So many people ask me never ending questions. I apologize in advance. Sometimes I just CAN’T talk. Blogging is much easier for me.
Thank you so much for all the followers and visiting my page. You have no idea how much your support means to me.
©2015 Danielle Nicosia