The sun

Blinds slightly open The sun fighting to get in and I just turn around and snuggle my blankets a little closer hoping to shut it out Finally it teases me and I am forced to consider its warmth faintly hear a voice or two with screams of an innocent child having fun in the sun in the sun are the many dreams I have left behind dreams so out of touch with me a person who I no longer am another time another space another me So please go away and just let me be

A long pause

Time has passed and I totally forgot I wrote this blog. As I read my past post I immediately felt uneasy reading my own words. so much to say and so much pain I have had to go through and yet here I am. I survived all this craziness that was limited to a few sentences here and there. A snapshot of what really went down. The great thing is that I can see strength in me. I have had to endure so much and I am still sick and even sicker from all the issues and complications of this surgery. The doctors call my case highly unusual and chronic. I think most have dismissed me just because they have run out of test and possibilities. I have been through the ringer with test, exams, and trial medications. The side effects have been insanely trying on me and my body. I feel I am not yet stable with the hormone meds and this leads me to swing from moods in a cyclical and taxing way. I have no energy because I do not sleep well and I do not sleep well because the pain wakes me up. I now officially suffer from chronic pain and sleep deprivation. I go to sleep sometimes at 5,6 and even 7 in the morning. I cannot explain this to a doctor or anyone because even I do not understand anymore how I got so sick from a surgery that was supposed to be simple. I fight every day with exhaustion. I crave rest to the point I rather not even eat because I don't want to get up and cook. The thought of even cooking is exhausting. I have severe breathing issues from my paralyzed vocal cord and the doctors have not been able to do anything to help that situation. I have stridor in my sleep. The noisee wake me up and my husband. let's just say thank God he is a sound sleeper. They have tried to say this is psychological and I get so angry at their simplistic and trivialization of my struggle. When I am sleeping and struggling to breathe in my sleep I am not conscious therefore my psychic cannot be controlling my breathing. My labored breathing is evident to my family and friends. I have never even had asthma in my life and never heard of a person struggling to breathe because it was psychologically induced. To even suggest this is ludicrous. Again how can I control or not control breathing problems in my sleep morons. This is the tip of the insanity I have been exposed to by the medical field. I have even doubted myself and all of it has caused me to feel powerless and hopeless. Pretty my self esteem is non existent. It's christmas time and everyone is running around buying gifts and I am trying my best to get my spirits up. I am grateful to a wonderful husband who I do not know where I would be without his support. I am also appreciative of the few family and friends who have lent a supportive ear and shoulder to cry. Despite me feeling so low I can see how wonderful life can be and I strive to better myself as a human being. There is a richness of life that I can experience at times simply because I know how delicate time can be. Nothing is guaranteed and I am learning to accept the new me. It means not looking back and one day I hope to be free of what I hoped for me and accept the new me and try to make her as happy as I can make her be.

Trying so hard

I am trying to eat gluten free and it is not easy. I have started with what I call 80-20 which means that I eat 80 percent clean and cheat 20 percent. I have to do the biopsy and in order for the biopsy to come back posititve I have to have some gluten in my system. The problem is that I have not scheduled the biopsy and I am still eating some gluten which obviously can't be good for my body. I think it is more complicated than that but it is late and I don't have the energy to go into all the details. Anyway I feel I have been doing real good. I have almost completely cut out bread from my life and Pizza. I still don't find it easy resisting Pizza but I am getting better at it. I used to think I can't live without having a slice of Pizza a day but I am getting better at it which is so hard to believe. I never thought I would say buy steamed broccoli and chicken and actually like it. I honestly am amazed at how I am food shopping. Only good stuff goes in the shopping cart and I don't feel too deprived. I am really proud of myself. I have had to go on this journey and figure out a lot on my own. I have stayed up many nights doing research, soul searching and more research. To some it may not look like a lot but I have radically changed my life. I am now doing more exercise and it has been a challenge because of my vocal cord paralysis which makes breathing labored and very hard. But even in this department I have made a dent. I never really have been a positive person and making the decision to make an effort to see the good in life despite feeling sick has been my greatest challenge and that has changed for the better. I have some hope which I have not had in a long while and it feels so good. Better than winning any lottery. I want my health back and I will do everything in my power to be the best I can be. Cancer Can kiss My diminishing A..... LOL!!!!!

Celiac

It has been a while since I have written a post. I am not surprised for my need to write since I just realized tomorrow makes 2 years from the date when I was diagnosed with Thyroid Cancer. I can't believe I made it this far with everything that I have had to endure. I am honestly surprised that I was not put in some mental hospital. Nothing has been easy up to now. I developed stomach spasms right after surgery that would not let me sleep. Then when I got the right meds and was finally sleeping some more I developed fibromyalgia (widespread pain from literally my neck down). The fibro pain would cause severe pain and stiffness that would not let me sleep. Night after night of pain(That is why I say I am surprised that I did not end up in the hospital because I had months of sleep deprivation). The lack of sleep caused me to feel weak and disoriented. They named it fibro because they did not know what else was causing this problem. As a result they tried many meds until finally my body settled on Lyrica. Lyrica helps but makes me forgetful, tired and spacey. I would like to up the dosage because the pain is still not controlled but it means sacrificing my mind. It is not a magic pill and in the end does not take my pain completely away. In my desperation for looking for answers they also have said I tested positive for Celiac (This is a gluten intolerance). I was told this months ago but was not strong enough to deal with the changes required to deal with the Celiac issue. I was angry because I got Cancer, Daddy died of his liver Cancer(while battling my cancer and the recovery from Hell), I got fibromyalgia, and now I was being diagnosed with Celiac (that meant I could not eat anywhere and especially my favorite food Pizza). It did feel like God had it out for me or the universe was screaming to tell me something and I just was not getting it or both. Anyway I am now desperate to heal my body and I think I am strong enough to deal with the Celiac. In the end I always wanted to live more organically and eat healthier. I have no more excuses. So I started the gluten free diet about 2 and a half weeks ago and so far not as bad as I thought. However there are some interesting things that have happened and it got me to thinking I should start writing again on here so I can keep track of what is working or not working for me. I am hoping that eating better will help my body to heal. I am not looking for 100 percent anymore because I realize my body will never be the same. I believe that no matter what doctors say the little blue pill I drink every morning will not replace the gland that God put in my body to help it function properly. Someone might say well if it worked so well then why did it get Cancer and I don't think the answer is that simple. I think many factors contributed to my Cancer and the environment also had something to do with it. Anyway since the Doctors do not know I have to kind of figure this out. A couple of months ago I started to get real depressed over living like this and I just prayed that God would give me the strength to continue fighting(I felt I had lost steam). I have come to the conclusion that I will do my part to get myself better. Or at the very least try very,very hard. So with God's blessing I going to move forwar. I give myself permission to start this journey towards a healthier and happier life. I chose to be healthy :)

Loving me

Right now feeling really bad about all that surrounds me. Fighting and sticking up for my self has not been easy but I feel I am slowly getting there. Am I wrong for the way I feel? Lately feeling angry about everyone and everything. Can't fight being sick and being sick and no sleep as well as being surrounded by people that I no longer can tell if they have my best interest at heart. I need to find me. I need not to give up on this situation or body that says to. No one knows the torture of this pain. I sometimes feel like I am going insane. No test, No doctor can figure this out. What happened to me on that table. I wish the surgery could have been recorded and I could comb the film to see what went wrong. I know he knows and I will never know. God let the truth come out so I can have some peace of mind!!

Apple cider vinegar

O.k so I woke up stiff as a board. Lord this is not easy to live with but I guess right now I have no choice. So I am going to try a couple of things to see what else I can do to try to "ease" this pain. I read Apple Cider Vinegar helps with aches and pains. So a couple of days ago I went to GNC and bought a bottle of Bragg's Apple Cider vinegar( which they say is the best). There are like a million things you can use it for. Now once it becomes a "cure all" or "fix all" claim even I become dubious. At the same time I say heck I only lose 3.50 on it so why not. So since Monday I have been drinking it.


Recipe:

Bragg's apple cider vinegar( you can get this GNC, whole foods etc)

1 Tablespoon of Braggs apple cider vinegar to 8oz water. 1xday.
note some people drink this 3xday. I however want to start out slow.

So far the first time it was kindda bitter so the following day I added honey tasted a little better. The third day I added cranberry juice much better. In terms of pain I did feel a decrease of chest ache and I was able to sleep a little more and move around in bed after I wake up with less stiffness. I don't think it is going to cure me but so far maybe it will be an addition to. I also have not increase the dosage to 3x a day so we shall see. I also want to try acupuncture and I am def looking into that. The other thing that has helped my stomach immensely is Kefir but that will be left for another entry. I am a bit tired right now so. That's all she wrote :)

I am not me anymore

I don't like the way this situation is turning me into a person who I don't and can't recognize. I am sick every day with this excruciating pain. I feel like I am losing my mind with lack sleep, pain, and misery tied all in one body. I have lost control over my life. Sometimes I fantasize.... If I could go back in time and do things different. Then as quick as I entertain that thought I snap out of it. No! I would have probably still had Cancer and things would have played themselves they way they are right now. That is the way the universe intended it. I hate Cancer for what it has done to my body I hate it I hate it I hate it!!!!! All night I am in agony and I even curse them all in my sleep. They said a "simple" procedure and yet here I am one year and a half later in the worst condition of my life. Tears are frozen in my eyes and bitterness consumes me slowly inside. How horrible to be the person to walk around with such anger and bitterness in my mouth and in my soul. I don't want to be touched or consoled anymore or told false reassurances with melodramatic pitying eyes!!!! I have no innocence left I know I am sick and it takes one damn cell to say I want to look different and convince the others that his narcissistic sick view of making my body sick is the best thing that could happen to me. Something in their DNA gets convinced of this propaganda and Just like that Cancer can come back. I hate that I feel this way but how can I put Cancer "behind" me when it is the reason that I am in so much pain to begin with. For the longest I felt so sick and out of control and it was totally hormonal and I did not know it. So much time wasted of my life with very few answers. I thought finally we will get to the bottom and my life will be different. But no once again it has turned upside down. I don't want or need any friends they don't "get me" anyway. To tell you the truth when they complain of colds and minor aches I just can't stomach it. There is an end to that pain. I covet good health like a girl would be jealous over another girls long hair or perfect body. I am ashamed of this but it is what I feel. I pray o boy do I pray for God to forgive my weakness and soften my heart once again. Somehow my pleas echo aimlessly within the walls of my icing heart.

LID

I am on the LID which is a low iodine diet and I have to be on this diet for two weeks. Basically everything has iodine in it so I am limited to wholesome fruits and veggies :) It is the second time on this diet. The first time I was dealing with the stress of my father dying and then he passed and I was still on this diet. I basically did not eat so this was double hard on me. Then I was told the shots were not available to get off the diet. I was so upset I think the doc should have called me to tell me to stop the diet. Anyway Now I am on it again and I am having trouble sticking to it and I am cheating a bit. Sometimes I just eat Matzo crackers and put peanut butter on it because I just don't want to think about it. I do feel more tired than normal but can't be helped. Anyway I know my hubbie is a little stress about the scan because he admitted it to me. I hate that I got Cancer but in a lot of ways it has made me and us stronger. I know he loves me and has seen how much I have been through this year. I feel his love and that is all I need. I know he loves me no matter what. Priceless. I would like to dedicate the song called "God gave me you" by Blake Shelton to him. I love you:)

sadness

Why is it that I feel so heavy. I feel this black hole all around me threatening to consume me. I wish I knew how to let go of it all but it seems like it is such a part of me. Some people are born with good looks, money and or great lives and I just feel like I exist. I am here like the wind passing through life. I miss Dad every day and it is so hard. I feel like some people understand grief and yet no one wants to talk about it. I talk to Mom about Dad but it hurts her too. I really have no friends to talk to about this. I think the few that I have talked to don't really want to hear it. I start the LID diet soon and I am not looking forward to that stress of it. I know I forever have to get tested for cancer and I just have to deal with it. I cannot fall apart every time I have an appt for this stuff. I just feel like it makes me anxious all over again. I will deal with all of it because this too is part of life. I have had to learn this too soon I feel but then again you have babies and children dealing with Cancer at such a young age. Life is not fair I feel but who am I to question this.

Lost

Today makes a month that a huge piece of me is gone. My dad passed away and I knew it was coming but knowing did not soften the inevitable hole in my heart. It feels like such a long time has passed since I have had the surgery and so much has happened. Dad got sick and it felt like I was racing against time. I wanted to hold on to every moment and yet I knew that if I lived like every day would be my last with him then I would never breathe. I had to live in some denial to survive the craziness that I have been through. Stomach pain that would not let me sleep. Then the now joint pain that they do not know where it is coming from and all the while Dad getting sicker and I was not well enough to fully care for him.
I was there when he last took his breath and I saw him leave this earth. How do you describe life exiting a body? It is like trying to explain a birth there are no words you just have to experience it to understand it. Ironically I did not know whether I would be with him in the end and yet I prayed two days before for two things as I cried in the shower. Grant me the strength to help him if I had to be there and please let him not suffer. That is just how it went down. I got there after a distressed call from my mom and I told my husband I had to go over. I saw Dad in not so good shape I called my brother Marvin and we decided the best thing was to call the ambulance. I asked Dad if it was ok and he just tilted his head toward me and shrugged his shoulders. I told him he would be more comfortable in the hospital. The paramedics came very fast. The asked me for the not resuscitate papers and I knew where they were because I had cleaned his room that week and remember seeing those papers and quickly putting them away. Little did I know they would be needed so soon. I quickly gave the paramedics the papers will a sinking feeling in my gut. He tried to help me put on his pants and he could barely lift himself off the bed to slide them on. His last words were to complain that his back hurt him as the paramedic and I tried to lift him off the bed. He looked so weak and frail and I could do nothing. I ran down the stairs and the paramedics opened the elevator door and yelled sir and I said Daddy please Daddy please breathe. Felix was crying too. We loaded on to the ambulance and as we headed to the hospital his face relaxed then tightened. I know he was gone. I remember the paramedics asking us what we wanted to do and we all yelled help him. The paramedic did not much of anything. By the time we got to the hospital they asked us what to do and I said Mom you have to decide then they said he was out for three minutes and I told my mom we have to let him go. Dad always said he did not want to be hooked up to machines and laying on a hospital bed. We took mom to another room when the Doctor said I am sorry my mom started crying in disbelief she did not understand they had stopped working on him. All my siblings got to see him in the hospital before they took him down. That night was a blur and so was the days that followed. The amount of support was overwhelming beautiful. I miss Dad and some days are better than others. I just wish I had one more chance to say I love you!!!!!!!!

Hungry all the time

Oh my Goodness my stomach is testing me all the time now. I go back and forth so much is not funny. During the day I may have stomach cramps and late night I get severe hunger pains and during the night I can get all of the above. The good thing about taking the new med is that I can finally sleep a little more the bad thing it makes me more hungry. I am trying to control the cravings but they are out of control. I am so tired of being in this sick body it aches all the time now and I just don't feel well. I am trying my best to try to understand and accept my new life but I am so frustrated and no one understands what I am going through.
P.s sis got gall bladder removed and is in hospital. Apparently she has been in a lot of pain. Atleast she can take pain killers. Anyway life will get better for me I have to believe it or else I will fall in to despair. One day at a time.

Wishes

Vacant souls with pure hearts
thumping up a storm
Shattered dreams with anchored faces
muddled up and in a roar
Storm weathered with cracked smiles and shovels pilling with salty tears
tomorrow the wind whispers the sky will clear
Behind me I hear mumbles and grumbles
Pockets of rocks mounting all corners
willing my leaded legs to roam they stand as if in quick sand
Frozen wishes are scattered all around me too fragile to touch
I reach and open the window and life lifts me
I closed my eyes so tight and feather flew

Just the way life is

Last year I was so annoyed with the fact that every time I saw a commercial it was related to depression and some new anti depressant drug out there. If you were not depressed you became it by listening to those commercials. Now it seems like I do not even hear the depression commercials because it seems like every commercial is catering to announcing some cancer center and if not then it's some new drug that can affect someone who has cancer or a history of it and if not then it's a law firm saying if you got cancer because of exposure to this or that then call. I wish there was a way that I could pick the types of commercials that come on. Every where I turn, I hear something about cancer it seems like I will always be reminded of it in some way or other.
Anyway I am sleeping better finally I was prescribed medication called Amitriptyline. Ironically it is also used as an antidepressant. In my case the gastro suspects the vagus nerve was damaged during the thyroidectomy. There is no test for it and there is no cure. I can get only symptomatic relief. There is so many things that have gone so unexpectantly with this surgery. Today I walked in the snow and was struggling to breathe. I feel like I have asthma now. John told me to see a speech therapist so she could teach me to breathe better. So much has changed I try not to cry and feel sorry for myself. New years is around the corner and I am afraid to even wish. Last year John said it would be our year and look what happened. I need to pick myself up but I feel really down. God I know you are listening please let things just get better from now on.

Darkness and thoughts

I feel something is shifting and I am relieved and yet afraid. All these months I have been sick I really have not had the chance to talk about my deepest fears and concerns with getting hit with this disease. I feared once the calm would come the avalanche of all else would follow. I had no time to contemplate on the experience because my thoughts was mostly on the pain of the constant nausea and stomach aches that would not let me sleep or rest. Now I find thoughts are starting to trickle through. Snapshots are going off in my head. It is very hard to be the same with my sister I want to block the way she was with me but it comes back in memories and it stings. She would see me throw up and just look at me and not ask me if I was ok. She would see me cry at night and not say a word. She ran all the time to her friends house. My dad never said much to me either. I know he wished me well but there was no you are going to make it, or I am sorry this is happening to you, he dropped off mom at the hospital but did not come up. I know he is going through terminal cancer but I have always taken care of him. I guess I will till he is passed. That is what I am made of. But it hurts. All of it does. I am left with the survivors guilt. How can I triumphed when he can't. No one can ever understand my scars. No one. As much as I want to forget this whole experience I can't it was the worst thing I have gone through. I just do not want to be an angry Cancer survivor. I want to be so unkind to the people who were not there but I know I will hurt more for this than they will. I feel like I need some time alone now. To be free from everyone. The apartment feels so crowded with my experiences and tears from the last 4 and a half months. I feel bound to this time in my life. I wish I could leave for a whole month and I just may do that.

Will the clouds ever part for me?

It rains hard and heavy in my heart
My eyes turn and look above
I ask myself where does the pain go when I cannot hold it in anymore
will the clouds ever part?
rain has gathered and made pools rounds my feet
so gentle and clean
everyone dancing in it except me
I look at the sky and ask will the clouds ever part for me?

submission

I am addicted to the manipulation of words. As if the composition of a few words coming together to form a sentence could articulate and fill this void. I saw an interview with an author who also happens to have cancer and is doing chemo therapy treatments. Almost everything he experienced I could relate to in some shape or form. When asked about his experience with the treatment he said "It was a passive experience, watching poison drip down that IV and into my body". "It felt like I was drowning and there was nothing I could do about it". That is exactly how I felt taking my radiation pill. I remember feeling dirty like there was no amount of water( believe u me I drank a jug) or showers that could wash the poison from my body or soul. I knew it was not contagious and yet I felt Branded. I could read so clearly the eyes of those close and not so close to me when they would see what I was going through. How awful for her and thank God it is not me. I did have a sense of helplessness when making one of if not the most important decision of my life. Do I take the radiation and increase my chances of surviving and maybe increase chances of getting other cancers from the radiation, and or deal with all the risky side effects. In the end I did make a decision not to fight the "drip". There seem like there was hope for me. So I pay the price. I sold it all without thinking twice. I swallowed the pill so quickly even the doctor was taken a back. He mistook my fear for bravery. I knew that if I thought....So I went in to a numb place in my mind and robotically picked the pill up and told myself to swallow the "concoction". You see by not giving myself a choice I excused myself from logic. My mind no longer responded for my body. The were independently helping me get through this. The mind gave the command and the body allowed it to happen. I let go and swallowed.

wondering

Today I read an interesting article about someone who had cancer. He happens to have esophageal cancer in the last stage. He also happens to be an author. I was moved on how he described how having cancer affects him, friends, loved ones and even strangers. I wish sometimes my words could articulate completely how I feel. A skill I secretly and openly envy. Cancer changes you like nothing does. I guess if you have not gone through it you cannot really relate. Today I spent the day sick with nausea. I make the decision to ignore it almost like being in denial. This is the only way I can get through the day and enjoy the things I want to enjoy. I now sleep better. The pain and nausea still wake me but I have learned to ignore it. When it gets real bad I get up and sit on the sofa. I barely cry at night anymore or curse "who knows" in the dark. I also read another story about ww2 pilots who were lost at sea for over 40 days. It was one of the most fascinating stories I read. It was around 6 pages short and I tell u I was in such suspense I sat at the edge of my seat. Many times they fell asleep with Sharks circling or nudging from underneath their raft. My mind immediately went to my sleeping struggles with the abdominal pain and nausea. I said to myself the mind is incredible!!! It shuts down whether through exhaustion or will. I said it is powerful. I never thought I could be in such a painful but powerful place. I know it is up to me to get me up and running. I have to be my cheerleader. I have to keep myself distracted from this pain. My pain is the sharks. It threatens to eat me and consume. I have to stand and mentally choose the side to stand on. I can be consumed by this "body war" or I can choose to live. Dad doesn't say much when he sees my pain but he shows me. I read it in his eyes. He is courageous to me. Maybe this is his last gift to me. He is a warrior!!!!!

Words seem empty

I am feeling really low and I do not know how to get out of this hole. I am praying God has not grown weary of my pleads and tears. I am simple folk with a simple plea. I guess I should get in line with the thousands of mothers who are also pleading for health for their children at sloan kettering. My pain is real and I have grown tired of hearing myself feel sick. I moan and groan and it echos. My doctors have quietly turned away they are stumped and do not know what to say. I want to make plans for my future and all I do is make appts to get me through the next day. Too many doctors names to remember, too many dates of important information, too many pills I have tried in a short time. I am here with no Cancer for now so I should be grateful but I am also sick. I never was sick like this for so long. My body seems to have turned against me. Angry I am not sure what. My mind is relentless and plays all sorts of tricks on me. Every time I see a bump I think it could be Cancer. I will have to learn to stop asking Why? Who made that word anyway. It is hollow and hurtful.

Don't care anymore

Why should I try to force a relationship or relationships when they do not come easy. I am tired of pretending it does not hurt. I still feel sick and doctors do not know why? I have faith I just wonder how much more. I see the pain. You just wore me down. I do not believe in you anymore. I can't understand life. I really can't. My head hurts and my heart is heavy

Dad

Dad has been in the hospital for two days now. He started chemo and that night he did not feel well. He waited till the morning and went to the hospital. They said he had had a small heart attack. He is alright now and still in intensive care. I am not sure if he is able to continue the treatment now. Besides worrying about him. I am still in somewhat same predicament in terms of my stomach. I can't sleep because the pain wakes me up and I have the "runs". Every morning I cry because it feels like I have been food poisoned. The doctors are not sure why this is happening and I am sick and tired. I think John is worried and so am I. This has lasted for over a month. I am scared and want to get better soon. I am sending out a prayer for dad and I. I know God is listening and he will give me strength to get through this. Amen