my blog about my fight with adrenalcortical carcinoma aka adrenal cancer

[Natalia Skye{★}]

Copied from my facebook  group called my fight with adrenal cancer please join if you would like!

OK GUYS U WANTED IT HERE IT IS THIS PAGE WAS CREATED TO HELP ALL FIGHT AGAINST CANCER WHETHER ITS YOU A LOVED ONE OR A FRIEND. I PLAN ON POSTING MY PERSONAL EXPERIENCES IN DEALING WITH CANCER. PLEASE FEEL FREE TO COMMENT AND ADD TO IT WHAT YOU today im trying to figure out what i can do to help me and my conclusion help others....im tough at times but deep down im nervous scared and i know i have to reamin strong for my loved ones. Deep down im sure they are feeling the exact same way. so with the help of a few friends this is my solution this page and i will post on it and write about my daily experiences not everything will be sad or bad. but i will stay very honest and remain me. well a special little lady lady whos bday is tom. just came home begin posting soon when i first found out about the cancer what it started as and my battles but right now its family timeLIKE. AND ALSO OF COURSE RECOMMEND IT TO YOUR FRIENDS! THANK YOU ITS AWESOME TO HAVE LOVING CARING FAMILY AND FRIENDS LIKE YOU GUYS. MAY GOD BLESS YOU ALL! I WILL ALSO BE POSTING PICS OF HOW I LOOK FROM TREATMENT TO TREATMENT I FELT THAT WRITING ABOOUT IT WOULD HELP ME TO BETTER UNDERSTAND IT MYSLEF AND VENT AND ALSO HELP YOU MY FAMILY AND FRIENDS AND ALSO HELP OTHERS SHARE THEIR EXPERIENCES. HELPING OTHERS HELPS ME!thank you to each of you that has joined. It helps me just seeing how many of my friends support me and I hope this helps answer questions and makes it easier for everyone to understand. I know this helps my family and all of you to see support and know how many prayers are out there. you guys are so incredible. I hope this helps your friends and family if they have cancer or know someone who does so please feel free to pass this on. writing has ALWAYS BEEN AN OUTLET FOR ME

the biggest ? i have had so far is when did u find out you had cancer well as crazy as it may seem it was actually almost 3 yrs ago. I was having alot of pain which i thought was from my 2 bladder preforations during my hysterectomy I had to self cath alot and it was normal to be in alot of pain to me. I went to dr and had an update mri it showed a nodule on my liver and a pea size cyst on my right adrenal gland. I was in a marriage with not much of a support system no insurance and lots of drs bills. So I did what I needed to do and only went when it was necessary. 2 yrs later I moved in with my mom and dad with my daughter. I was in alot of pain and ended up going to the er where they did a ct scan the liver nodule i was told was a hemangioma meaning been there since birth. The pea size nodule on my mass had grown to 3cms. I had went back and forth for tests to drs and so on very tired and fatigued was diagnosed with fibromyaligia and positive lupus test. With my mom having lupus i figured thats what it was. Then I was told I had to see the endocrinologist luckily i did my neurologist told me i had a rare blood clotting disorder called factor 2. I have a small very tiny blood clot in my brain. With that i went to endocrinologist told it was a functioning tumor and through a bunch of tests fianlly they thought the tumor was just a cyst and non functioning. When i had my surgery 4 1/2 weeks ago it ended up being a little bit bigger than a small baseball thankfully they were able to take it out robotically but they were not sure at what they saw when it was removed the top part was a cyst and the middle grissle and the bottom a tumor that was attatched to my vena cava. Thank god I have a great surgeon at cabell he made the decision due to my blood clotting disorder and having extrememe hypotension (very low blood preassure) exspecially during surgery to leave a small peice of it attatched to my vena cava (main blood supply vein) so after i went back to surgeon im told well we are definatly going to have to do radiation and maybe a round of chemo i went back to see what the tumor malignancy board suggested and they suggest aggresive chemo with rounds of radiation. So here i am i start my first round of chemo and radiation thursday. I will know more thursday the only thing i know is i dont go back to the surgeon til all chemo and radiation is finished and thats in feb. Thanks for reading... if you have any ?'s ask i hope this made since.

today was lexi's 5th bday. Alot of people came in the family to see her and It was wonderful I made her a cinderella cake. And did laundry just from baking a cake decorating it and doing dishes i used while bakingpretty nervous about thursday has anyone here had chemo or known someone who went through it. I would greatly appreciate feedback! It will help me know what to expect and I always expect the worst and hope and pray for the best. Im trying to stay very positive I feel like im in a nightmare and cant wake up. i dont want to miss any of my daughters life! Or any of my fam n friends either. Thank god for holdiay get togethers i just pray i have the strength to get through them and can be happy go lucky as always. I know I will try my best. Thanks everyone for the support and encouraging words! the cake and laundry im exhausted! But it was all so worth it i wanted to put my own personal hands to work on her cake she loved it. God truly blessed me when the girl who wasnt supposed to get prego because of childhood trauma did. And finally became a mommy. I never knew missing an adrenal gland would be so tiring...well after chemo and radiation i will be put on supplemt hormones to help. ty everyone who has prayed posted and joined. Remember this is not just a place for me my fam and friends but for everyone to share their experiences with cancer. AND HELP SPREAD AWARENESS. THANKS AND GOD BLESS.oday is a tough day for me. Im very tired and last night i was sick. It takes every ounce of energy i have just to walk. i miss being healthy. so please i f you are never take it for granted. i saving all of my energy to go and read to lexi's prek class today. And visit family. I hope everyone has a great day. tom. is chemo day #1.

today was lexi's 5th bday. Alot of people came in the family to see her and It was wonderful I made her a cinderella cake. And did laundry just from baking a cake decorating it and doing dishes i used while baking the cake and laundry im exhausted! But it was all so worth it i wanted to put my own personal hands to work on her cake she loved it. God truly blessed me when the girl who wasnt supposed to Im so sick of cancer! i hope everyone reads this because eventually YOU are going to have to face it and deal with it. I hate to sound like this and by all means disagree with me and let me know. I truly believe doctors are nothing more than puppets told what think and say. They have NO clue what causes it. Researchers seem to only throw out an answer to whatever type of cancer they are studying when they are out of funding. Several cures have developed over the years but quickly get swept under the rug. The only answer for its cause is food or water. Its the only common factor. Look it up, the junk they put in food increases yearly. Cancer rates, increase yearly. I asked an Amish guy how many cases of cancer are found in the Amish and surprisingly enough the sickness common to us are almost no where to be found with them. I really don't even know why i'm writing this, just to tell everyone I guess but there seems to be few if anyone concerned or talking about it and the attitude is that its okay to be little financial pets to the FDA. I know this isn't as interesting as what's happening on the X factor or Ashton Kutchers divorce but pass it along. by stephen tuckeget prego because of childhood trauma did. And finally became a mommy. I never knew missing an adrenal gland would be so tiring...well after chemo and radiation i will be put on supplemt hormones to help. ty everyone who has prayed posted and joined. Remember this is not just a place for me my fam and friends but for everyone to share their experiences with cancer. AND HELP SPREAD AWARENESS. THANKS AND GOD BLESS.

Well today is def. going to be a busy day! Im playing legos with lex building transformers and we are getwell this new med still makes me sick at my tummy even with the compazine. But i can deal with it it also makes my eyes burn and turn red and my skin gets super hot and i get lethergic. But ill do whatever it takes to be here for Lexi. I guess it depends on what other meds you are on and how your body adjusts to things. Maybe after a while my body will adjust. Remember to reccommend this pagetoday has been quite a day for me. very exhausting and nerve racking!!! I cancelled my radiation appointment to take lexi to the dr as any good parent would. Good thing she has an acute ear infection. I hestiated to wear my mask as directed. But i thought of my mom and friends who have lupus and other friends who have cancer and thought well if I do this maybe other people will feel more comfortable doing it and I could set an example. Am glad I chose to wear it even with the stares and comments behind my back. I expected the patients & children to look and maybe make a few comments. But not medical personnel. I was dismayed at the looks and way some of the medical staff reacted. Exspecially a nurse manager whom I had worked for on the peds floor. She stared and whispered. Making me feel very uncomfortable all she had to do was ask...I then remembered being in highschool I had an awesome friend and was a teachers aide to eli she was wheel chair bound. I cant remember why now. But I would often assist her. At first some new students may have been scared of her she was a prek and k teacher very sweet kind and loving and still is to this day. I also remember we were talking one day about things she had never done and always wanted to do she told a me and a friend of ours she always wanted to jump rope. Later we took the kids out for recess i gathered some of my friends and said lets make this happen we helped her jump rope that day. It was amazing we were so proud of her. But what was more awesome was seeing how proud and excited she was for herself. Next my thoughts went back to when i was in college and a few of my good friends how they must have felt. Jared was my ex bf he was deaf...He taught me sign language by writing it on paper and i took classes and studied books. I remember us being in walmart or the mall. When Id use my voice people would say omgosh u can talk. I would politely say yes and then explain our story quickly to raise awareness. But one person sticks out in my mind greatly his name was Patrick may he RIP. Patrick had muscular dystrophy he was wheel chair bound. One of the sweetest people I have ever met once you got past him being so hard on himself. Patrick asked me one day what I saw when I looked at him. I answered honestly: I said I see an intelligent funny charming handsome great guy who is 1 or my best friends! He said what about my chair. I said its used for a mode of transportation for you. He said you are blind to the fact that im in a wheelchair for the rest of my life. I didnt really understand how he felt by people staring at him but i had witnessed it multiple times at the mall. Kids would run point and stare people grown adults would even make fun and make comments. It always made me mad cuz they were hurting my friend. And of course being the person that I am I had to speak up and stand up for my friend. I decided to do a group project and we had people in our class take away 1 sense for an entire class such as hearing or seeing or even speaking boy was that an interesting period. It was all out of whack. Today I was reminded of my dear friends ones with disabilities I was somewhat blind to and also reminded maybe this is something I should raise awareness to. So im going to kindly ask you if you see someone who is different remember its not their fault and god makes everyone special and unique sometimes the purpose is not yet known. If you hear someone making fun of them or see them staring kindly ask them to stop and ask them how they would feel challegenge them to go even 15 to 30 min without 1 sense before judging a book by its cover! Thanks for letting me write and vent feel free to share your stories about being different! to friends and family dealing with cancer I really want this to be a place to help others share your story and have other share theirs. Even after my battle is over and I beat this (hopefully i do) I plan on keeping it updated with new cancer information. Remember all types of cancer. Thanks everyone and god bless!ting ready to make posters for her to ride in the christmas (holiday) parade! Then she's going to her dads for hr bday party tom at his house. Im hoping she doesnt get sick theres a horrible virus going around ambers sick with it and everyone in her class is too. How am i supposed to take care of her while shes sick and do stupid chemo...ugh cancer sucks but I will always be there for her I dont care if I have to crawl to her. I pray it stays away!

ok so im being a procastinater big time. I know i have to start my chemo pill tonight while lexi is gone. Hopefully the pharmacy got it in today. Im going to play cards with the fam. tonight. visit an awesome fam member thats in. And then its chemo time. Im kinda scared i have to admit! I know just a pill but one with alot of side affects and chemicals. But i am still alive my heart goes out to alot of people today who lost their child friend family member in a car wreck. Life is to short so spend time with the ones you love and your friends and NEVER EVER TAKE IT FOR GRANTED

last night was a very rough night even worse than previous ones. i didnt feel well too begin with but aloing with my other side affects something happened last night that scared me. Ive had some reactions to the Mitatne I have never had before. along with the strong chemical taste and burning eyes and burning hot skin, fatigue and hot flashes. I began experiencing worsening pain. perhaps its because of the adrenal gland i have left working harder. but i also experiences a funny taste numb and tingling tongue and lips, shaking, dizziness, being light headed and lethargic. They are still present except im not shaking as bad or as lethargic or dizzy thanks god.Mmy tongue and lips are still tingling and but not as numb as they were they were completely numb i know cuz i bit my tongue and felt like I had dentist work done. Even with pain meds im still experiencing pain. I just want to be normal. Thankfully I have a drs appoiment monday I was able to get worked in. I would've went yest. But things didn't get so bad til last night. Thanks everyone for the love help support and contined prayers. I ask god to watch over each of you every night. In that way I dont know your sitiuations in life but he does. I hope everyone has a blessed Thanksgiving if you have good health be thankful for that and time with family and friends today.May god keep you all wrapped in his arms

5 THINGS YOU NEED TO KNOW ABOUT ADRENOCORTICAL CARCINOMA

0 COMMENTS 

Nov 18, 2009 | By Harrison Howe 

1. RARE BUT DEADLY

Adrenocortical carcinoma is not a phrase many people are apt to hear too often; this rare type of cancer is seen in only one out of 1.5 million people. It affects the outer layer (adrenal cortex) of the adrenal glands, which are small glands found on top of each kidney. The adrenal glands produce hormones that help to regulate blood pressure, heart rate, salt and water balance and management of fats, proteins and carbohydrates. Tumors of the adrenal cortex can be either functioning (when too many hormones are produced) or non-functioning (production of hormones has been stopped).

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2. TOO MUCH OF THESE HORMONES CAN BE A BAD THING

In the early stages of adrenocortical carcinoma, a non-functioning tumor will likely result in no appearance of symptoms. A functioning tumor, however, will cause the overproduction of these hormones: estrogen, aldosterone, testosterone and cortisol. Too much of these hormones can result in weight gain in the face and torso, fine hair growth on the face, upper back and arms, high blood pressure, elevated blood sugar, frequent thirst and frequent urination. Too much estrogen in women can cause irregular menstrual cycles, or menstrual bleeding in post-menopausal women and growth of breast tissue, decreased sex drive and impotence in men.

3. AS ADRENOCORTICAL CARCINOMA GROWS

As in most cancers, there are stages of adrenocortical carcinoma. In Stages I and II, the tumor is either under five centimeters (I) or over five centimeters (II), but is in both stages contained to the adrenal gland. Stage III disease is when the tumor can be any size and has spread to nearby fat or lymph nodes. The fourth stage is when other organs are involved, including lungs, liver, bones and the connective tissue in the abdomen. Recurrent adrenocortical carcinoma is when the disease has been treated and then returns, either in the adrenal gland or other organs.

4. TESTS, TESTS AND MORE TESTS

Blood and urine tests and imaging of the abdominal area are methods by which adrenocortical carcinoma is determined. A 24-hour test of the urine can be used to discover an elevated amount of cortisol in the system. Certain blood tests will show higher amounts of estrogen or testosterone as well as cortisol. A study of the blood chemistry may be performed. A CT scan or MRI will show the adrenal cortex and any tumors present. A PET (positron emission tomography) scan also shows the presence of malignant tumors in the body.

5. FIGHTING A TOUGH OPPONENT

Treatment for this type of cancer varies according to the stage the disease is in when treatment begins. Oral mitotane (drug name: Lysodren) is used in most stages and in recurrent disease for functioning tumors. Surgical removal of the adrenal glands and even nearby lymph nodes is sometimes used to combat adrenocortical carcinoma. Radiation therapy and chemotherapy are also options depending on the stage of the disease. New biologic therapies to use the immune system to fight the cancer are in clinical stud

Read more: http://www.livestrong.com/article/3420-need-adrenocortical-carcinom...

 

I HOPE THIS HELPED I WILL CONTINUE TO BLOG ON THIS WHENEVER I AM ONLINE! AS OF TODAY MY NEW MEDS ARE ACTUALLY HELPING I HAVE A SHOOT BOOKED TOM AND I WILL NOT MISS IT! IT TAKES MORE THAN CANCER TO BRING THIS GIRL DOWN! MUCH LOVE AND PRAYERS TO YOU ALL I HOPE THIS IS INFORMATIVE I WILL ALSO BE POSTING ON OTHER CANCERS AND ADDING LINKS THANKS GUYS LOVE LEXUS MOMMA AKA TASHA

[Natalia Skye{★}]

I havnt blogged much lately been busy with the holidays approaching! So thursday I go to Ohio State University Cancer Hospital for whats called a shared 2nd opinion. Im kinda nervous not much is known about my type of cancer. Its possible I have 2 types which is even more rare. The only thing I can do is hold my head high keep living my life raising my daughter blogging to help others and raising my baby girl and modeling of course. Im being featured in a local art show in jan im totally stoked!!!! Cant freaking wait 2 of my pics were selected! Ima pull through this please feel free to share your experiences with cancer as a victim a survivor a supporter it helps many others to read that you are not alone. love and prayers Natalia