Tuesday, December 4, 2012

Time is Ticking...

Today I went into the city for some new medication I have to be on for treatment. Treatment starts in a few days. One more day then I start the Low Iodine Diet. I am exhausted, I have a ton of things to do. Theres not enough time in a day anymore. I fell asleep in the taxi coming home because I am just beat. I never did that before LOL.  Today was a very long day when things never go as planned I had to wait two hours for the taxi to pick me up. So I didn't get home till 3pm which really sucks it was a 11:45am pickup. Story of my life.

Then my mother took me to the organic food store to buy stuff for this diet. Definitely time consuming and a lot of money. Especially your first time. I had no clue what I was doing. Tomorrow is my last day to eat whatever I want. Then for 6 days I have to stay on this diet till treatment. I took a picture lol because I couldn't believe all that money just for this food.

Thursday I am going to NYC by choice to be part of this new support group. Looking forward to doing this for myself. I need to do this. Saturday, I am getting a haircut and I have to pack.

On Monday I leave to go to the Lodge I am staying at in NYC for two weeks during treatment. My parents will be taking me there after work.  I am leaving by 4pm. Hopefully I will be home three days before Christmas. This all depends on my scan. Fingers crossed.

I am a bit nervous and getting really anxious which of course is normal.. It just sucks.

Remember that witch Sabrina from TV? Well I wish I was Sabrina right now where I can just snap my fingers and make all this $hit disappear.  Better yet, I wish I can just sleep right through all of this and wake up like nothing ever happened. Oh to be perfectly normal and fit. What a dream...

Trying to do the best I can...

Daily, I am going to be posting what I have been eating on the diet each day. There are so many people that are confused what we CANNOT eat. I thought this would be helpful.  I will also be updating as best as I can during treatment everyday. You will be hearing from me often.

Stay well!

Saturday, November 24, 2012

No Spirit this year

With the holiday's around the corner, This year I just dont have the spirit like I used to. It's different this year. This year I have cancer. Many nights I just feel like its all a friggin nightmare.

My Birthday was the 18th of this month. It just wasn't the same. I spent the day with my niece. Although we had a good time ( I can't remember what we did) LOL. The struggle is still there. Then I went to my grandfather's house to spend time with him. An hour goes by my older sister had to come over to shave all of his hair off because he kept crying that all is hair is falling out. That killed the day. This is something I am going to remember for the rest of my life. Both of us are battling cancer together and its rough. It's an awful thing to go through especially two people in one family at the same time.

I am trying so hard to stay strong through all this but its tough when all I do is see him cry. Thanksgiving was sad my grandfather came over. He wasn't feeling so good so he took a nap. We ate at 2pm because he had chemo the next day. We knew he wasn't going to stay long. Then during dinner he started to cry. I ended up leaving the table after seeing everyone cry. So not the usual Thanksgiving. I just hope to GOD that things will turn around soon for the both of us. 

My parents booked us a Disney Cruise trip for all 8 of us including my niece. I am leaving tonight and I am kinda excited now because I just need a break. My mom got me a wheelchair just in case I cannot do the walking. Everything is all packed and I cannot wait. I need this BADLY! I will be home December 1st then reality sets in then. 

I am going to do my best to NOT THINK of DECEMBER. Seriously wish I can just stay on the boat forever and forget about DR'S & the cancer but I know that cant happen. Now that we are leaving tonight that means radiation is closer than I thought. This is kinda of making me sick because I am going to be away from home for two weeks.

During Thanksgiving I forgot to mention that the Peanuts (Charlie Brown) had a show on about CANCER. I never seen anything like this before. Check it out. I loved the ending :)

The video has 3 parts. The show is called " Why Charlie Brown Why"

Hope you all have a great week! I will post a few pictures when I get home.


Wednesday, November 21, 2012

Trying to stay positive...

Ever since surgery in August I been a mess. A complete mess. The medication change is almost every two weeks. I go for blood work every two weeks. I am not myself nor will I ever be ever again. Seriously, If I had the choice I would stay in bed for days and hours. Some days I do. My body is acting crazy. Unfortunality I ended up back into my local hospital because I ended up becoming HYPER. My endocrinologist never changed my medications. Thankfully this time my local ER knew what they were doing and lowered my dose.

During Hurricane Sandy, my nerves were shot. I was a mess. I never in my life was so scared to get medical treatment during this storm. I didn't even think the storm would hit us so hard here in NY. The storm was horrible. During that time I had three appointments that week. Blood work and to talk to my endo because of the pain I been having in my neck. It has been one month with this pain in my neck.

Apparently, I cannot see my endocronologist. But I get to see his " nurse practioner". Better than nothing right? I guess so. Well I dont even know anymore honestly.  I saw the nurse practioner. She was really good. She knew what she was talking about. The nurse expalined everything about " Tumor marker" to TSH to T3 and T4. Things my endocronologist never told me. It really aggravated me that I didnt know all this until last week but besides the point now I know. They are watching me. She had to lower my dose so now I am on Levothyroxine 112mcg one a day. I still have to continue with the Calictrol for the rest of my life.

Unfortunality, my body is out of wack and it will be for awhile. I get that. Things take time. I no longer have a thyroid so my body has to adjust. But honestly I didnt think it would be this bad. I have no desire to do a thing. I feel like crap 24/7. I am always exhausted and cannot keep my eyes open. Still till this day I am having the neck pain where I had surgery. I'm not suppose to have pain. It hurts mostly at night. Finally I am laying down like a normal human being when I sleep. Sleeping well thats a whole other story. It sucks. I sweat a ton. I could shower probably every hour if I could. Oh, My hair is falling out and I didn't even start RAI yet.

 Low Iodine Diet andRadioactive Iodine starts in a few weeks and I am getting myself sick over this.
Thankfully I got approved to stay in NYC during treatment. I get to stay in NYC for two weeks alone. I am looking forward to resting since I wont be able to go out.

Basically, I am just trying to be positive. This isnt so simple. I have way to many symptoms. I was suppose to go the "urgent care" center where I get treated but I didnt have the energy to hop on the train and then take a taxi since funds are low as well.  Especially I am going away in a few days with the entire family on a disney crusie for 6 days. It's just alot. All of sudden she wanted me to go to the urgent care because she has no idea " WHY" I am having pain. The nurse who I saw last week has no idea why Im naucious and have pain and didn't do anything last week for it. It just getting to be to much. So I am dealing with the pain since advil does nothing and I am going to ENJOY this VACATION before LID and RAI starts in December.

I hope and pray nothing is wrong but its just way to much for me to go all the way there when they should of done something for me last week. Its to much.

Have a Happy Thanksgiving!!!

Ciao- Danielle

Friday, November 2, 2012

Thanks to Sandy my appointments are postponed.

Hurricane Sandy, hit New York pretty bad. Not only NY but NJ and other states as well. I honestly thought nothing of it until I heard the crazy wind, saw things flying and tree coming down like crazy. Then my great grandmothers  house was hit an entire tree fell right through the roof. Four days later the tree company still didn't come to take it.

My heart goes out to everyone who lost their homes and who are affected by this. Luckily my home did not get hit just some minor things that can be fixed. We were without power for three days. Thank god for generators we were able to get power to save the food and drinks.

I was a bit nervous because I had appointments this week. Of course all the appointments where canceled. We had no cell phone service for a few days. Numerous of times I tried calling the cancer center but I was unable to get through. I started to get concerned because I needed blood work to be done in the middle of this disaster. Yesterday, five hours it took to get in touch with the cancer center. Trying to reschedule all my appointments became really frustrating especially when I barely had service in my room. I wasn't going to stand outside in the freezing cold to try and get some reception. It was so upsetting and frustrating. Trying to make calls all day exhausted me. I seriously cant imagine how those of you who are going through treatments now felt. It is a scary situation especially newly diagnosed. I was so nervous I didn't even know what to do in the middle of the storm I packed all of my medications and documents. For the first time in my life I was petrified because I didn't know what was going to happen next. So I needed a plan.

Finally, today I had blood work done. I will call on Monday for the results. The last few weeks I havent been feeling all that well. Most of the time I still cannot keep my eyes open. Sleeping is still a problem as well. My heart races a lot and I feel like the medication just isn't working for me. Right now there is nothing I can do because I cannot get into NYC for appointments. Luckily today I was able to go local for the blood work because It had to be done asap.

The American Cancer Society has a list of coping support after a disaster

Coping With Cancer After a Natural Disaster: Frequently Asked Questions for Cancer Patients and Their Caregivers

It is so important to have a plan. Always have a bag ready full of medications, supplies etc.

There are thousands of people who are still without power and homes and it breaks my heart for those who need critical care. I have to say I was very disappointed in NYU hospital because there generators weren't working. They transported all there cancer patients to Memorial Sloan Kettering. Something like this is disappointing because it shows that they didn't care. They knew the generators weren't working. This should have been checked before hand. I am glad I don't go there for treatments.

I moved all of my appointments till later on in the month since transportation to NYC isn't possible since no one has gas and taxi's subways everything is still closed.  

The last few days felt like I was in a movie! I never seen anything like this in my life.

Please stay safe!!!


Tuesday, October 16, 2012

A very sad day...

I dont know what it is but I just cant sleep. I am exhausted.

Today, was just a bad day. Papa went for his whole body scan because he has bladder cancer. The cancer has spread and everything grew. That means he needs an agressive form of chemo now as well as injections. This is so sickining.  I guess this is just a bad year for the both of us. Today I took a 2 hour nap. My sister tried to wake me, but that didn't work. I was out cold. I needed that nap badly. When I woke up I saw all the missed calls and knew something was wrong. I was so mad I wasn't at his house hearing the news. In a way I am glad I didn't go because this is just alot to take in.

Finally, I went there and saw him. Seeing him made me really upset. Why is life so unfair? Will this ever end? So basically he starts chemo again October 29th then hes done in December. Once papa is done than he has to go for another Whole Body Scan ( WBS). Then when I come home from the cruise, everything starts for me.  I start the Low Iodine Diet.

Today was just a sad day... I really hope he will be okay. I admit I cannot handle me and him at the same time. This is ALOT for one person.  He is the best grandfather ever, he is always there for me. I am happy I get to see him everyday because he lives across the street from me.

So heartbreaking...

This has to end at some point a person can only take so much...


Wednesday, October 10, 2012

Love the Fall...

The fall is my favorite season ever. Love the leaves and the cool weather. I have been pretty busy. trying to just live my life. Trying to not think about this stuff. Everyday I am exhausted from the moment I wake up. I cant seem to keep my eyes open a half hour after I wake up. Pretty crazy. So I called the Dr's office yesterday and they said I am still in the Hyper range thats why they lowered my dosage in the hospital. In about 2 weeks I go for blood work. Till then its a waiting game and I continue with the same medication. Also I am barely sleeping could be another reason why Im always tired.

Yesterday was 2 months since surgery. I still get pain here and there. Also a lot of discomfort.  I still cannot sleep like I used to and it pisses me off. I love my sleep. Now, I sleep up right because every time I lay down flat I feel like I am choking. So sitting up sucks.

Next week is my niece 3rd Birthday! I cannot believe she is going to be 3 already!

Today is my uncle's first birthday in heaven. I miss him more than anything. He was the best godfather anyone could ask for. Happy Birthday Uncle Mac. I love you. I miss you & I hope you are safe with great grandpa and great grandma. Your always on my mind.

Have a good night.

Ciao- Danielle

Wednesday, October 3, 2012

Never ending Dr. appointments...

Everyday this week I had a Dr's appointment. It does get overwhelming but I want to focus next month on  my birthday and VACATION that is much needed. So I booked everything this month just so I can have some space before the nightmare begins in December. 

On Monday, I went to the cancer center to meet with a nutritionist. I have learned alot. I am trying to eat HEALTHIER and BETTER to get me stronger for Radio Active Iodine. Instead of going to my second appointment, I decided to cancel.  It was time for a break plus I wasn't ready for it. My favorite band was in town which was perfect timing. I saw them live in concert. It was a 30 minute concert but perfect. Even though it was alot for me to stand there that long, I enjoyed it so much. This is something I needed. Then after the concert was over I stayed. The security guard was telling some of us to stay calm dont yell and make a big deal about it. All of sudden he comes out and I started SHAKING like crazy. All the girls were pushy and it pissed me off. Jason Wade was right in front of me I smiled and I wanted a picture so bad but I ended up taking a picture of him and some girl. I was really exhausted and shy. I am so mad I actually left crying. For the last five years I been trying to meet them. Being backstage thanks to daddy is the BEST but I just wanted to take a picture with him and say HI. His music really helps me get through life.  It was very disappointing. Next time I will make sure I try harder and push every person away.

Music really helps me get by especially dealing with all this. It is so overwhelming and you cant do this alone.

October is BREAST CANCER awareness month. I am all for Breast Cancer awareness since I know a few survivors and some are fighting this battle. But there are other survivors out there that need your help as well
. There are other cancers that you should be looking for every year. Especially these precious little kids who are so young who have pediatric cancer. After hearing about Ronan's story from Stand up 2 cancer and how everyones ignoring pediatric cancer. This frustrates me so much. We have to get out there and spread more awareness.

Like I said I never heard about THYCA until I was diagnosed this summer. COMON! We have to do something about this we have to get out there and spread more awareness!

I am one of those people that HATE CAMERA'S but if I have to do that in order to get the word out there about THYROID cancer than I will. 
I have some good news coming up... but I can't share just yet.

I truly believe that ALL TYPES of CANCER'S should be EQUAL.