I decided to write this blog when I discovered that January was Thyroid Cancer Awareness month in an attempt to increase awareness. It has been nearly 9 months since my diagnosis and I am due for some check ups in February 2010. I do not fear regression anymore because I know that no matter what I am a survivor! I do not let cancer scare me, and have faith and trust that God knows why things must be the way that they are. I wanted to utilize this final blog post as a form of outreach, asking all thyroid cancer patients to send me any information that was useful to them during their experience at amcruz0928@yahoo.com. Also, I am hoping to come up with ways to serve as an outlet to young people with thyroid cancer. Here are some links I found best useful as well as the list of doctors and their phone numbers for anyone that needs them in the NYC area. May all reading this be blessed with great happiness, and perseverance.
Dr. Laszlo Retsagi (PCP)- 212-319-3977
Dr. Jessica Lim (ENT) 212-434-2323
Dr. Martin Barandes (Endocrinology) 212-249-0622
THANK YOU to: Annie Cok and Hoyu Yiu for the beautiful photography please be sure to check them out at: http://yiuphotography.com/
Thank you to Annie Huaraca, my make up artist and costume designer and my inspirational clothing guru. Please be sure to check her out:
http://acitydoll.blogspot.com
Last but not least a special thanks to ehT Mills for his work on the blog background and layout. He is the true essence of life as a beautiful struggle. Please be sure to check him out at: www.runandeatnyc.com
Websites:
Please see www.checkyourneck.com for information on Thyroid Cancer and the Light of Life foundation.
www.cancercare.org for Counseling Services
www.thyca.org
www.navigatingcancer.com
Books:
Rubin, Alan. Thyroid for Dummies, 2nd Edition. Wiley Publishing Inc: Indianapolis, 2006.
Arem, Ridha. The Thyroid Solution. Ballantine Books: New York, 2007.
Life is what you make it. Remember that all cancer cases regardless of the similarities are unique in its person. Stay positive, smile off the worries, and live each day in appreciation and recognition of its magnificence. Thank you so much to my readers and please spread thyroid cancer awareness. CHECK YOUR NECK… the examination could save yours or someone else’s life.
It is September and work begins… mornings are rough! I am so tired, and I try to go to bed early but it does not help. I feel drained when I go into work and I cannot control it. I get moody and depressed for no reason. I stare at the blank page when I am writing my first paper for the semester. Tears stream down my face. I feel worthless. What is happening to me? I do not know what to write. I feel numb to the world, like an insignificant particle floating in the Earth. I am crying because I am crying. Upset at my upset when I should be smiling at the mere fact that I am alive. My hands type some words I am certain would get me an F, but it is the best I can do and I am happy that I was even able to complete it. At work I feel aimless trying my best to hide the pain and anguish. The smiling faces of the children brighten up my days but seeing the young child with cancer makes me feel ashamed of the hurt I feel. She is tiny yet strong, facing chemo and God knows what else, I would take all the strife if it meant she did not have to suffer anymore. My birthday arrives, September 28, 2009, my endocrine visit states my TSH (thyroid stimulating hormone) was in fact low and hence Dr. Barandes increased my levothyroxine dosage to 137mg, a thyroid sonogram determines everything looks good (no pesky nodules in sight, thank God!). My sister and boyfriend, although mostly my sister, who loves to plan parties, (I admire her resilience), set up a beautiful surprise party and all of my family and friends attended. I was so happy and know I could not have asked for more.
During the summer I had experienced some terrible neck and back pain as well as some numbness on my right arm. Dr. Retsagi sent me to an orthopedic doctor who performed an EMG and nerve conduction study. The results were radiculopathy, which is similar to a pinched nerve usually located in the lower back and neck area. The doctors could not tell me if it developed because of the immobilization of the neck during the rehabilitation after surgery, although it seems to be the case since the symptoms came then. October and November were busy times bouncing around to physical therapy, the social worker, and other doctor appointments; as well as trying to emerge out of hypo. I felt better, a little bit more energy each day and getting adjusted to the school, work, family, boyfriend, friends schedule. My boyfriend and I both stressed about circumstances take a trip on a big old roller-coaster ride that nearly ends an eight-year relationship built with so much hard work and love. Christmas is depressing until he takes me Christmas shopping for my family. It was not about the gifts but about the love I put into getting things for others. I receive my final grades on papers and it is not the grades that matter but the comments made by the instructors. I wish they knew how much I needed to feel like my input was valuable. I am so hard on myself and I know it is something I will struggle with for life. Cancer made me reevaluate things. Luckily, I adjust well to change. I am so ready to say goodbye to 2009!
The Caterpillar/ Doctor Visits and More Tests
I am 23 years old at this point. Had never been to the doctor more than once every other year if even that many and now I had to visit three different doctors in a span of three weeks. First visit after surgery was to the endocrinologist for my levothyroxine dosage, the pill that functions as my new thyroid gland. Next visit was to my surgeon Dr. Lim for the removal of the stitches. The final visit was to my PCP, Dr. Retsagi to test calcium levels and see my physical state after surgery. All check ups were fine, but I still got great anxiety from the not knowing. It was time to get help for my emotional recovery, one of my closest friends having worked for Cancer Care as an intern, suggested I contact someone over there. I was happy to know that my social worker was someone close to my age. I felt like I was talking to a friend and she helped me deal with my fears and anxieties. But it was sad knowing that she would only have a few sessions with me since she was an intern and would be leaving the job at the end of July. I attended a visit with the endocrinologist, we had previously discussed he would begin the process required for the total body scan on this visit. He acted as though he did not remember my case. I immediately contacted Dr. Retsagi and told him I needed a new endocrinologist. In June, two months after my surgery when I was supposed to have known the results of my scan, I had to start the process over and get a new endocrinologist. Best thing that ever happened to me! Dr. Barandes, my new endocrinologist, assured me that I was in good hands, I had a 99% cure rate and that this was all just a really bad episode that would soon be over. He explained what the next steps would be. First, we needed to make me hypothyroid (low thyroid hormone level) for the scan since I could not have any thyroid hormones present in my body. Next, a week prior to the scan I needed to get on the low iodine diet. Finally, I would come in for the radioactive iodine pill, and 48 hours later I would come in for the scan. The scan determines whether there is any more cancer present in my body and if it has spread to any vital organs which in thyroid cancer tends to be in the bones, lungs, and on rare occasion, the liver.
I am exhausted! Waking up is a challenge each and every day. I need more sleep but I have to work and keep moving. I have responsibilities to my family to my friends to my boyfriend to my job, an endless list. Now I also have to get myself ready for grad school. But I am so TIRED. The mood swings come more frequently. I gain some weight. My immune system seems down since I get all kinds of infections. I want it to stop! I have to help my sister with my nephew’s first birthday party, but I am so tired! I feel awful and frustrated because I want to be there but I cannot. I get into arguments with my boyfriend for meaningless things. I want all of his attention but I cannot get it because he has his own life to live. He tries and fails, nobody and nothing can make me happy. I am miserable. I am ready to plead insanity, until I read a book that explains it all “The Thyroid Solution” by Ridha Arem. It was my bible and explained all of the chemical imbalances caused by hypothyroidism. I recommend the book for any person with thyroid disease. I spoke to my new social worker, JL. She tells me I should understand that this is just a funky place I am in due to my hormonal imbalance, but I have to have faith that things will get better. I heard it but I did not listen.
After a spot opens to work summer school at my job, I think I could use the extra cash so I take it. I need a break from the city so I go to Miami with my boyfriend’s sister (my lil’ sis) and her friend. We are blessed with gorgeous weather. I pray my rosary every day after a wonderful friend, who I hope will be the priest that hosts my marital ceremony someday, teaches me how. I believe that everyone has the right to change, and I went back into Catholicism because it felt like I came back to a peaceful and welcoming home with a mother and a father that loved me regardless of where I had been. I come back to the city ready to work, but summer school is slow, not much to do which is good for me since I am still hypo. I get on the low iodine diet, not really in the mood to make creative meals so I stay away from dairy (so hard!), sodas (easy), seafood (easy), any thing with salt (which I later realized I did not need to do), among a few of the many things I discovered had iodine. It was no fun, but only lasted a week. Finally on Monday July 20, 2009, same day I had to go to a godparent course required for my nephew/godson’s baptism, I go in for the radioactive pill. I needed to be away from people for five hours due to the radioactivity, especially pregnant women and babies. Dr. Barandes tells me I have to urinate as much as possible so that the radioactivity does not remain in my bladder. July 22, 2009 I go in for the scan. I am emotional because I felt that this day determined the end or just another part of the excruciating cycle. I lay on the machine as the examiner takes pictures he says, “So far so good, this is going by quick, that is a good sign”. I close my eyes and feel Jesus and Mary with me. I am not alone. The scan was supposed to take an hour or so, it took fifteen minutes. After the examiner is done, Dr. Barandes comes in and takes a look at the images. He sits with me and explains them to me “This scan tells us if there is any thyroid tissue left in your body in which the cancerous cells could go to. If there was any thyroid tissue left the radioactivity would seem present. But as you see here it only went to the digestive system and places it should have gone such as the remaining thyroid tissue Dr. Lim needed to leave for your parathyroid glands. You are free, as I told you, you would be. Now go on and live your normal life.”
I try my best not to cry. I am so happy I want to walk out and scream to the world “look at me, I am cancer free, I am going to live, I am going to change the world someday, my time here is not done!” Dr. Barandes said to go out and have the best meal I could think of since I had been on the terrible diet. I missed dairy so much the first thing I did was eat a parfait from Hot and Crusty, YUMMY! I send text messages to all my family and friends and cry on each single one message sent. I am so happy but I needed to thank Jesus and Mary who never left my side. I remembered the church right by my job, St. Ignatius of Loyola, and look at the sign that says mass at 8:30AM. It was 9AM but I was hoping it was not over yet. When I enter the priest is handing out the Eucharist and I was the last to take it. I pray and cry, I am sure people must of thought I was a lunatic, especially since I was not from the parish, but I didn’t care. Thank you, thank you, thank you Lord, I am CANCER FREE! I walked to work feeling like every breath was a new one, a gift from above. There was one coworker I had to tell the news to. I had only told her and two of my other closest colleagues about my situation, because cancer is something that is hard to speak about without feeling inhumane. We embraced and tears welled in both of our eyes. I was so happy I could dance. But cancer free did not mean the end of the rollercoaster. Receiving a total thyroidectomy made me susceptible to the thyroid disease, and I became hypothyroid once again. I felt extremely depressed and couldn’t wait until my monthly endocrine visit for a new dosage. School and work would be starting again soon and the summer was almost over.
The tears welled in my eyes as I stared at a stone cold-faced doctor telling me I had a “small” and very “treatable” cancer. We should schedule surgery at my earliest convenience, since there was no “rush”. What?! No rush to getting that monster out of my body as soon as possible, are you kidding me? I thought about telling my family, my friends, my boyfriend and it was just too much to bear. I had never been sick other than a common cold that lasted no more than a week, how was I going to deal with the pain of surgery, the recovery process. Did I need chemotherapy? She did not know the details of my case until they took samples of the removed thyroid. So the whole organ had to be removed? Yes, it was best to limit the chances of recurrence. Total thyroidectomy and right neck dissection to be performed on April 27, 2009, a month from the date of diagnosis. Oh God, why me? I can’t deal with this. Just kill me, don’t let me suffer like my grandmother, my aunt, my grandfather. So now what? I walked out of the doctors office in a daze, “do you want me to call somebody” she handed me a tissue before I left, “I have your sister’s number here as your emergency contact”. Yeah, sure my sister who has my eight-month old nephew in the hospital with a terrible cold and has been through enough to have to deal with my shit, call her I thought. “No, I’ll be fine,” I said, really wishing I would be. I walked the streets in a daze, tears falling uncontrollably, I didn’t care if people thought I was crazy they didn’t just hear that they had thyroid cancer. I went to the hospital with my sister and my nephew. He cried and I thought “you’re crying for the both of us, I wish I could scream as loud as you”.
Okay so now I need to tell work I need time off. I have to tell my superiors that I have cancer. I do, surprisingly don’t break down and I can do this. I’m going to be okay. This is all happening during lent, Jesus dies, and my grandfather has just passed. I find out I am going to Teacher’s College of Columbia University. Great! What was the point if I was probably going to die. The more I researched about thyroid cancer, the faster I fell into depression. The more scared and anxious I became. I made myself sick, and insane. I envied everyone who did not have to go through this pain. I wanted it to be over. April 10, 2009. My friend comes to visit from California. We are supposed to go out to have a nice time. My boyfriend is the DJ to the party, it is going to be fun. Until I have a breakdown. I did not want to go out that night, but I did because I desperately wanted to feel normal. “You don’t know what it’s like knowing you have this monster inside of you ready to eat you alive without mercy!” I yelled this and for once I accepted that I was not okay, I was very afraid of the uncertainty. Days later I cried in my mother’s arms like a baby. Visited Dr. Retsagi at least 15 times in the span of 3 weeks, felt like little critters were inside my body consuming all of me.
April 27, 2009. I wear my button down shirt, very small surgery, may be out same day. My family is all there. I feel loved and fortunate. They have to wait in the family room while I go in and wait for nurses to check me. The anesthesiologist speaks to me about the surgical process. A nice nurse tells me it is time. My family walks with me to operating room. I am not at all nervous, just happy to be removing the monster. Dr. Lim is my surgeon, which is great since I am comfortable with her. She is not stone-faced today but rather sympathetic and sweet. She puts a hand over my shoulder and tells me I am going to be fine. I trust her. My arms are out to the side, I am laid out staring at the bright lights. I feel closer to Jesus in this crucified state. The anesthesiologist tells me I am so tiny, she is crazy, has she seen my thighs? I was waiting for the countdown. Lights out… Mom, dad, hey guys it is you, I am up, I made it! Look at me and they said I would feel strange when I woke up. Woah, what are these things with blood hanging like breasts on my chest, oh yeah, the drainage. Mom and dad said I shouldn’t talk, doctors said it would not be good for my vocal cords since they are a little traumatized. They can’t be in the recovery room for too long so they leave. I don’t feel good. Friend and cousin come in next, I am not feeling too good. The anesthesia wears off, I feel sick. My sister and my boyfriend come in. Emotions, pain and nausea mean I cannot function. My sister tries to make a joke, and I cry, it hurts and you can’t help me! Don’t leave me I am scared. My sister fights the tears. They leave, I throw up. Dr. Retsagi comes to visit, wipes off the vomit from my lips, nice of him, he says he will see me in the morning. I thought I would be leaving tonight, I can’t because the parathyroid glands were also traumatized, and my calcium levels had dropped, I feel the tingling in my hands and face. My lips are dry so the nurse puts petroleum on them. How much longer until I get a room I ask? Soon the nurse leaves me I had already thrown up four times. I was sad she was leaving since she had taken such good care of me, but I was getting a room soon.
I am placed in a room. I kept looking at the clock. I had my rosary but I did not know how to pray it. I just held on to it and felt comforted. The clock was going by so slow. But I knew that at 6AM, Dr. Retsagi and Dr. Lim would come to see me. I had to look great even with the pain of my stiff and throbbing neck, the lightheadedness, and the soar throat. I sneezed and felt as if my head had come apart. I look at the mirror and see the scar, as well as the blood dripping from the drainage. I use the bathroom and need assistance so I have to call and wait for the nurse. It isn’t until moments like this that we realize how badly we need one another. The circulation device on my legs annoys me because of the constant beeping sound it makes. At 5AM the nurse finally removes them. I did not sleep a wink so I sit on the chair reading the magazines my coworkers had blessed me with. I fight the pain and the lack of comfort it takes to sit up this way. Dr. Retsagi says I will be sent home soon since he sees me so well. But Dr. Lim gives different orders. My calcium level is still low and I cannot leave until the liquid has drained from the scar. At 9AM I find my cell phone and look at my messages. I am annoyed I can’t speak and people take so long to text me back. My friends come in at about 12PM and all I want to do is chat with them, but it hurts to. I force myself to eat the gross hospital food, and drink my medicine. Despite my hate for milk, I drink it, number one source of calcium! My family comes in at about 3PM and at 5PM after my last check up they determine I can go home. I have to be on calcium supplements for life. My family tells the story of my father, nervous, passing gas, my boyfriend pacing back and forth in the family waiting room, surgery took longer than expected. They love me. Dr. Lim had told them I had more cancerous nodules she needed to remove. I pray she got it all. Now there is more waiting to do.
