Sunday, September 17, 2017

A Graves Disease letter

A Letter: To Family and Friends

Of Those That Suffer with

 Graves Disease

Dear Family, Thyroid diseases of any kind have a 
profound effect on the body.  Most notably Graves
 Disease One of the aspects most noticeable to
 others is its effects on the brain and emotions. Graves’ 
Disease can turn even a mild-mannered, loving spouse
 into someone who is at best often irritable, angry, 
emotionally unavailable or self-absorbed. Graves’ 
patients don’t necessarily understand that their
 feelings originate in out-of-whack brain chemistry
 and sometimes blame others for their difficult
 emotions. These factors contribute to the high 
divorce rate for people with Graves’ Disease.
 Sometimes the patient leaves the marriage, 
believing the spouse is responsible for everything
 that’s wrong, and other times the spouse can’t
 take the abusive behavior or lack of normal marital
 relations, and ends the relationship, not understanding
 that the problems are a manifestation of an illness.

It is quite impossible for someone who has never
 experienced the attack of Graves’ Disease on the
 body and brain to understand how difficult it can
 be simply trying to function or get through each  

day. Graves’ Disease is the emotional equivalent
 of an earthquake, a tornado, and World War III. 
When the disease is stabilized, many people 
experience a form of Post-Traumatic Stress Disorder. 
Relationships are damaged, sometimes permanently, 
and careers are destroyed. People tend to view the
 erratic behavior of the Graves’ patient as part of their
 personality, or in terms of character defects. Many
 people with Graves’ have had it a long time before
 it was diagnosed, and a lot of damage may have
 been done already without anyone having a clue 
that an illness is responsible.
To complicate matters, “thyroid problems” are 

viewed as minor by the general public, since for a 
time before sensitive tests became available, anyone 
who was a little fat and tired may have been told it 
was a thyroid condition. Many people mistakenly 
believe that hyperthyroidism is a free ticket to weight 
loss, not knowing that it’s a dangerous illness.
 True thyroid. Problems are serious and can be fatal
 When untreated . 
 When treated, the journey to wellness is not
  Necessarilyfast or smooth. Since every cell and organ
 in the body is negatively affected, symptoms develop 
ranging from extreme fatigue and sleeping and digestive 
disturbances to nerve, joint, and muscle problems, as 
well as hair loss and fingernail breakage, not to mention the menstrual cycle, fertility, and sexual function. Miscarriage
 is the heartbreaking result for many pregnant women. 
While the body will usually heal in time with proper 
treatment, permanent heart damage and osteoporosis 
can occur.
Anxiety and depression are common, and because of the
 myriad of unexplained physical symptoms, the patient 
focuses on health issues. Friends and family usually hav
 no idea what’s involved or why the patient is behaving the 
way he/she is, or how to deal with it. The result is that the 
thyroid patient may be treated as a hypochondriac or as emotionally “weak”, and berated by others or left alone to 
deal with life at a time when support from others is needed
 most of all. The final whammy is when the spouse, one 
who has promised to love, honor, and cherish for better 
or worse etc. can’t understand or be supportive either.
But there can’t possibly be a more difficult task than giving 
support to a spouse who isn’t necessarily sick in bed,

 Or doesn't look pparticularly ill, but very likely has stopped functioning in many areas of the marriage often includinhousehold duties, parenting, social activities, and most likely
 the bedroom as well. On top of that, how do you support someone who seems irritable or angry much of the time 
and might not even have any of the positive qualities left that attracted you in the first place?
It’s not going to be easy, nor will the return to good health 
be fast. You may already be tired of hearing the word “Thyroid

id”, but if you’re not, you probably will be. It can take 6 months
 to several years, depending on treatment method and individual response, for thyroid levels to be stabilized and for the healing process to begin, and it could be many years before full recovery takes place. It’s common for some psychological and cognitive effects to remain for many years.
A few suggestions are that you learn everything you can about
 this disease, and recognize that your partner has a very serious condition and is not able to be the kind of spouse you need right now, perhaps even less than with most other serious illnesses, because of the psychological inward war to deal with as well as physical illness. This may be the greatest challenge your marriage ever faces, and if you survive this, you should be able to get through anything together. She/he may not understand right now that it’s just as difficult for you right now as for him/her, but someday he/she will, and will love and honor you even more for standing by him/her through this.
It’s important to take care of yourself too. Spend some time with safe people who can meet some of your needs for stability and friendship that may not be met in your marriage at this
 time. Talk to other spouses who are going through the same

 thing if you can. Talk to your spouse about your feelings and develop a mutually agreeable way for you to protect yourself when his/her inner state boils over and threatens to affect you negatively. For some people it helps to get out of the house for awhile when necessary. She/he can work on trying to recognize when the bad spells are coming on and give you warning so you can protect yourself while he/she deals with it, but it’s not always possible. I could tell you not to take it personally, but that would be trivializing what could be more personal! It may take some time for you 
to completely forgive and trust again. Try to remember that this is temporary, and that it’s an illness beyond his/her control.

Monday, July 17, 2017

Sailing Through the Storm ~New Breast cancer Medication

July 17, 2017 -- The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.
“HER2-positive breast cancers are aggressive tumors and can spread to other parts of the body, making adjuvant therapy an important part of the treatment plan,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Now, these patients have an option after initial treatment that may help keep the cancer from coming back.”
Breast cancer is the most common form of cancer in the United States. The National Cancer Institute (NCI) estimates approximately 252,710 women will be diagnosed with breast cancer this year, and 40,610 will die of the disease. According to the NCI, approximately 15 percent of patients with breast cancer have tumors that are HER2-positive.
Nerlynx is a kinase inhibitor that works by blocking several enzymes that promote cell growth.
The safety and efficacy of Nerlynx were studied in a randomized trial of 2,840 patients with early-stage, HER2-positive breast cancer who completed treatment with trastuzumab within the previous two years. The study measured the amount of time after the start of the trial that it took for the cancer to come back or for death to occur from any cause (invasive, disease-free survival). After two years, 94.2 percent of patients treated with Nerlynx had not experienced cancer recurrence or death compared with 91.9 percent of patients receiving placebo.
Common side effects of Nerlynx include diarrhea, nausea, abdominal pain, fatigue, vomiting, rash, swollen and sore mouth (stomatitis), decreased appetite, muscle spasms, indigestion (dyspepsia), liver damage (AST or ALT enzyme increase), nail disorder, dry skin, abdominal swelling (distention), weight loss and urinary tract infection.
Patients should be given loperamide for the first 56 days of treatment with Nerlynx and as needed thereafter to help manage diarrhea. Additional antidiarrheals, fluids and electrolytes should also be given as clinically indicated to help manage diarrhea. Patients who experience severe side effects, including diarrhea or liver damage (hepatoxicity), should stop taking Nerlynx. Women who are pregnant or breastfeeding should not take Nerlynx because it may cause harm to a developing fetus or a newborn baby.
The FDA granted the approval of Nerlynx to Puma Biotechnology Inc.

Wednesday, February 15, 2017

Thyroid Hug

UPDATE : My ocular specialist has finally told me that I'm ready for eye decompression surgery.  
  I thank God every day for Dr. Thomas Joly.  He has patients that come from all over the world to see him. And I was blessed to finally find him after five eye doctors .   I knew there was something wrong with my eyes but I kept getting the brushoff saying I have dry eyes. I would go blind in the middle of the night sometimes. I've been through two years of steroid infusions. It is a temporary fix until my eyes stabilized . In October I will be having the surgery for decompression. I pray this will be the last of my eye surgeries.  With this type of surgery there's always a possibility that I could be cross eyed .  If that happens and I pray it doesn't, than I will have to have another surgery. Don't ever give up. I didn't. 

Monday, August 8, 2016

This is how Graves Disease Feels

There are days like today I can't even get out of bed .
 I have TED ( thyroid eye disease ) so driving can be challenging some days too .  I call myself very lucky to have found a fantastic ocular specialist and every few months I have to have Medrol Infusions (IV therapy ) three times a week .
I also am one of the rare people that have Pretibial Myexedma also .  It's a skin condition on my calves that requires steroid cream and is painful and red and there isn't a cure. The best they can do is inject steroids into the areas. I now see one starting on my foot. It's very disturbing but I would rather know so I can be proactive with my disease. 
This disease is so complicated and I require regular blood work . 
I had a thyroidectomy so I 
take medication to keep me alive . It's a syndrome 
. In short, it effects my whole system . Endocrine, adrenal , etc . 
This disease is hereditary . 
This disease causes brain fog . 
I thought after two bouts of breast cancer I had had my fill, but it seems I have more challenges .
The most important factor that a Graves Disease patient needs is support .
It is a battle going on day by day to charge that battery .
Please don't give up on us . We need you .
Think of Graves as a ship in a storm . Try to hold on for the waves to pass!
UPDATE: I will be having eye decompression surgery in October 2017 . 

Thursday, January 28, 2016

Fighting Grave's Bravely

It's been a long ride this past year.  I have not been feeling well for the last few YEARS and visited  many doctors. The worst part of this diagnosis besides extreme fatigue, was the not knowing factor ...
My eyes had been giving me problems and I went to opthomologists in Georgia than Virginia. I can't begin to tell you the frustration I felt.  My primary care doctor would come in and I would lie on the bed waiting for her, that's how tired I was . I have fibromyalgia and of course breast cancer twice and knew every time I was ill .  The hard part was convincing my doctors that I needed answers . The bizarre fact was one blood test that showed my thyroid levels were changing rapidly .  I was bouncing from hypothyroidism to hyperthyroidism. I was told that I had Graves' disease by my Opthomologist ! I went to endocrinologist and a barrage of blood work ensued . My endocrinologist said DO NOT go to my month long journey through Italy . I went . I did not regret it but I did end up in a Rome hospital for two days . I was not going home . I had many symptoms including extreme fatigue but I was determined . I started in Venice to one of my cousins and my father's brother and his wife in Verona. Elena was wonderful and my cousin closest to my age . 
We than visited Florence and ended in Ladispoli., where many of my  first cousins live . It is a coastal city, not far from Rome. I began to piece together my medical history as well as our family tree. We had a count that protected the Pope.  I was royalty !  .  I found that I was the eldest of 21 first cousins . Finally,  I was meeting my fathers family . I 

kept pushing myself  keeping me from going into a thyroid storm was a drug PTU. I knew that I wanted to go to Sardegna and I took a flight there to meet many cousins and two Aunts . I can honestly say that everyday was so special . I had a family ! They were worth my symptoms and I am going to go back soon.  I was not forgotten.
When I returned,  the immediate removal of my thyroid was scheduled . My doctor called a surgeon and told her I needed this surgery ASAP. The surgery went well in July and I began my medrol infusions because all the flipping hypo, hyper had take a toll on my eyes. .  I found out I also has Thyroid Eye Disease. (TED). Finally I was getting answers and HELP ! When I was in surgery my friend called my daughter and left a message regarding my disease and surgery. It does have a hereditary gene. 
I had not heard one word from my family .  
I was not surprised . 
Now I am truly relieved .  I am being closely watched by my ocular surgeon and endocrinologist.  
 Part of my month long excursion was my family's  medical history . I 
stayed with my Aunt for last week of my trip and was in shock that she had been through breast cancer and also had her thyroid removed .  I was truly my father's daughter . Again the synopsis of this entry is to follow your instincts. I knew there was something that the doctors were missing and a simple thyroid test brought me to answer "what was going on in my body! " I am still having small changes in my medications due to the different T levels . I will be having decompression eye surgery soon .  I'm on medication for the rest of my life . I will be returning to Italy healthier . I am grateful that I have the stubborn gene like my father .  I never gave up trying to get answers .  I had many setbacks even in Italy, but I was determined to meet everyone.  I have a loving caring family in Italy .  I am not an 
orphan . My father's family gave me so many loving gestures and their
 patience was remarkable. I was born when my father was still an Italian citizen . I am allowed dual citizenship. I believe once again that everything happens for a reason . Please remember that your body speaks to you .  I had  never heard of the disease. Graves disease affects every part of your body. So when the thyroid is gone your whole body is affected . . I will not give up my dream to meet my grandson . They might think it's best to forget me. I promised my father that I would do anything I could to reunite my family .   I  moved to Washington state from Virginia. I have a moving company and my car. That little move cost me close to $10,000. Since I was brushed off I was sad that I have been really forgotten. for two years my brother had been begging me to come to Georgia so that we could be a family. He was living in that filthy trailer park with two teenagers. my brother has always been the kind
Karma is all I say. I don't wish any ill towards them but it's a fact that how you treat others bounces back . I'm still a mother first.  I always put them first and I was last.For example, I slept on a used mattress and had a full school schedule in NY . They had bedrooms and beds..Their own rooms always. I knew that I had to insure their safety and their health. 
Forgiveness is the key . 


Friday, August 7, 2015

~Meet my warrior angel Jamie~

I started this blog to inform and  provide wigs to women that were going through chemo and just could not afford one.  Jamie is strong in her mind and fighting ovarian cancer now.  I sent her the wig you see her in.  I have never met her but I know her through social media. This makes me happy.  I wish I could do more but, I too struggle financially. That will never stop me from helping women like Jamie.  She is a fighter and her smile always has a place in my heart.  She wrote me how much she loved the wig.  This is who I am.  I have done this many times but never put a face to who I have helped, Jamie is the exception because she embodies everything I stand for in my life.  I hope to be doing this for the rest of my life. The whole reason I started this blog was to inform others and tell my journey through breast cancer twice. I had to fight my way back when I discovered I had to have a double mastectomy in 2008. The first bout I had was in 2006.  I found it, so women please keep checking.  Know your body~ Than, the unthinkable happened three years ago.  I started to seep silicone through my implants and had to endure another reconstruction with saline implants this time.  I was told that I have silicone artifacts under my sternum.. No, they can't be removed which makes my other auto immune disorders worse .(Fibromyalgia, Grave's Disease, Thyroid Eye Disease.)
Her spirit keeps ME going when I need a push. Jamie you are a STAR!  I love you.  Thank you for letting me tell others what I do.


Monday, March 16, 2015

~~~A Final Farewell~~~

Twenty Years
"I have always loved you" he told me one day in 2011. 

I learned allot from Tony Civilla and now I am saying good bye
He was larger than life and I miss him so much.
He left this world too soon.  What a loss to so many...

I know that he is finally without pain, maybe reading by the ocean...or fishing there.
When the moon comes out all the sadness goes away.
When the stars are bright I look up at the moon and think of all we have been through together.
We really lived life and no one can take away those years.

I know you are up there with my Dad fishing and ruminating, laughing together. they had a mutual admiration and were great story tellers.
I miss your smile, your laugh, your ...your wonderful way of looking at life.
I miss your cookies.
I miss the man that made a big impact on my life.
so many years, so many tears.
Good bye I will see you again
With a wink and a nod you are always in my heart.


Friday, February 6, 2015

Cannabinoids~New hope for breast cancer

Cannabinoids: a new hope for breast cancer therapy?

Caffarel MM1, Andradas C, Pérez-Gómez E, Guzmán M, Sánchez C.Author information:
1Dept. Biochemistry and Molecular Biology I, School of Biology, Complutense University-CIBERNED-IRYCIS, Madrid, Spain.


Breast cancer is a very common disease that affects approximately 1 in 10 women at some point in their lives. Importantly, breast cancer cannot be considered a single disease as it is characterized by distinct pathological and molecular subtypes that are treated with different therapies and have diverse clinical outcomes. Although some highly successful treatments have been developed, certain breast tumors are resistant to conventional therapies and a considerable number of them relapse. Therefore, new strategies are urgently needed, and the challenge for the future will most likely be the development of individualized therapies that specifically target each patient's tumor. Experimental evidence accumulated during the last decade supports that cannabinoids, the active components of Cannabis sativa and their derivatives, possess anticancer activity. Thus, these compounds exert anti-proliferative, pro-apoptotic, anti-migratory and anti-invasive actions in a wide spectrum of cancer cells in culture. Moreover, tumor growth, angiogenesis and metastasis are hampered by cannabinoids in xenograft-based and genetically-engineered mouse models of cancer. This review summarizes our current knowledge on the anti-tumor potential of cannabinoids in breast cancer, which suggests that cannabinoid-based medicines may be useful for the treatment of most breast tumor subtypes.
Copyright © 2012 Elsevier Ltd. All rights reserved.

Sunday, December 28, 2014

~Cancer Free and 60 years old. My anti cancer diet.~

     I just turned 60..yes, this is a recent photo.
 I stay on an anti-cancer diet. No white food, processed food and  I don't eat meat except Bison and antibiotic free organic meat.   I believe that there are no diets really, only a lifestyle. I maintain my weight because I learned how to cook  Mediterranean style and I incorporate the meals my Italian Grandmother and Father taught me.  It's simple really.  I can teach you too.

Wednesday, December 17, 2014

** Don't let anyone take away your sparkle **

I have always been Superwoman
At least that was what everyone thought..
 I never thought much about my energy level since I had to juggle work, single motherhood, school. 
Than my father said one day that if he owned a business he would make me CEO.
I was organized, never tired and I just was that type A woman.

Than after my last cancer surgery I lost my energy.  I lost my appetite.  I couldn't sleep well.
I have been trying to figure out why with my doctors.
Fibromyalgia, anemia,. I just thought it is something else. I didn't give up
I barely made it through the day..oh it must be depression.  All the diagnoses and pills and still I didn't feel like me.
I knew that my energy was gone but also I didn't feel happy and I was always irritable.
Finally I walked to my car last Friday and could barely make it out the door.
I was pale and my eyes were blurry. 
Driving was concerning. I just had to have some answers. 
I have been too tired to shop! I actually ordered my groceries and picked them up at the curb.
How was this possible?
I had been clutching my throat thinking for the last few months for some reason 
I got to my doctor's office and they said your appointment isn't until Tuesday.
I said please look at my face ...I  need blood work now.  My doctor had already ordered them
On Monday I got a call from my PCP.  I knew from the past when the doctor calls you listen.
The first thing she asked me was how I was feeling. I said lousy, really tired..
Than I heard what I have been trying to determine , a true diagnosis.
Do you have heart palpitations she asked..I said yes I do 
I heard her say that is because you have a hyperthyroid condition.
I slid off my bed and started to cry. Finally a disease that explains all my symptoms.
I have apparently had a low TSH for five years! 
I want everyone to know that stress can bring on a myriad of complications including medical and emotional.  I know that I have been half dead with exhaus since 2009.
I have been to so many doctors and hospitals telling them how sick I feel.
At last an answer.
I plead with all of you to listen to your bodies.  That is why I was clutching my throat and I didn't know why?  Amazing how our bodies tell us what is wrong.
 I have opted to stay on medication for a month and than have my blood rechecked.  I might be faced with surgery again.   
When you are hurting and exhausted all the time there has to be a reason.  Do not give up !
If you are tired and irritable, exhausted and losing weight, have your thyroid checked.
I have been sick since 2009.
Finally there is a diagnosis and a plan.
 I fell through the cracks even when I was tested over and over.  
I thought I am not imagining this!
I am still in shock that I knew that my body was fighting something.

My Dad said Never give up until you have answers.
Thank you Dad.
I want to fly through the air again. I can't wait to run around Italy in a few months.
Never Give Up. 
I fell through the cracks even when I was tested .
I was forgotten for five years.

Thursday, October 2, 2014

it's that time again~Breast cancer awareness month

I just had great news.  I have been having regular six  month ultrasounds and MRI's once a year to check on a node that has been bothering me under my implant. I am happy to say that it has shrunk in size!  I believe that this is because of my anti cancer diet which I will be posting .  I learned how to eat a MEditerranean diet since I grew up in an all Italian family and heritage.  It turns out that all the veggies and small amounts of sugar and meat has really helped..I will be posting and concentrating on diet  on next blog post.
 My Grandma and my Dad were right..we did not eat processed food and we ate many bright vegetables.  I also learned that frozen vegetable and fruit can be used and in many cases much healthier than fresh.  We don't know how long the produce has been sitting and with frozen food they are fresh when packed. Stay away from anything that has allot of words you can't pronounce. I do eat pasta with only semolina flour and no I will not give that up. Whole wheat pasta just doesn't compare.  I am praying for all my sisters fighting this battle.  Laughter, love and do what makes you feel happy...It's a simple rule, but keep the negativity out of your is not healthy. Namaste..Happy Eating...

Saturday, April 26, 2014

Exercise proven to be helpful with Aromatase inhibitor side effects

Recently I started back on Aromasin and I am experiencing once again, pain and night sweats.  I saw this article and wanted to share it with all the women experiencing these debilitating side effects. I decided after talking it over with my oncologist, that it would be better to go back to this aromatase inhibitor after the five year suggested therapy I ended last year.  So yes, I am looking for answers and hopefully exercise will help with the side effects.

Much research has shown that exercise, a healthy diet, and counseling can help women feel better, both during and after breast cancer treatment.
A new study has found that exercise eases joint pain that can be a side effect of the aromatase inhibitors, a type of hormonal therapy medicine.
The study, “Randomized trial of exercise vs. usual care on aromatase inhibitor-associated arthralgias in women with breast cancer: The hormones and physical exercise (HOPE) study,” was presented on Dec. 12, 2013 at the 2013 San Antonio Breast Cancer Symposium 
After surgery, women diagnosed with hormone-receptor-positive breast cancer usually take hormonal therapy medicine to reduce the risk of the cancer coming back (recurrence). Hormonal therapy medicines work in two ways:
  • by lowering the amount of estrogen in the body
  • by blocking the action of estrogen on breast cancer cells
There are several types of hormonal therapy medicines. Tamoxifen, a selective estrogen receptor modulator (SERM), is one of the most well-known. Tamoxifen can be used to treat both premenopausal and postmenopausal women. In 2005, the aromatase inhibitors:
  • Arimidex (chemical name: anastrozole)
  • Aromasin (chemical name: exemestane)
  • Femara (chemical name: letrozole)
were shown to be more effective at reducing recurrence risk in postmenopausal women and are now used more often than tamoxifen to treat women who’ve gone through menopause. Aromatase inhibitors aren’t used to reduce recurrence risk in premenopausal women.
Hormonal therapy usually is prescribed for 5 years after surgery.
Still many women -- about 25% -- who are prescribed hormonal therapy to reduce recurrence risk after surgery either don’t start taking the medicine or stop taking it early, usually because of side effects.
Joint pain and stiffness are common side effects of the aromatase inhibitors (doctors call these pains “arthralgias”). Up to 50% of women taking an aromatase inhibitor have joint pain or stiffness. Less common but more severe side effects of these medicines include heart problems, osteoporosis, and broken bones.
If doctors can find a way to ease the joint pain caused by aromatase inhibitors, it’s likely that more women would stick to their treatment plans and take the medicines for a full 5 years.
In the HOPE study, the researchers wanted to see if exercise could help ease joint pain caused by aromatase inhibitors. The study included 121 postmenopausal women diagnosed with stage I-III hormone-receptor-positive breast cancer who had been taking an aromatase inhibitor for at least 6 months. All the women said they had at least mild joint pain and weren’t exercising when the study started, though they were physically able to exercise.

Thursday, March 6, 2014

Happy Birthday to my new breasts and my life!

Six years today I had a double mastectomy with reconstruction.  I am truly blessed and I am still going strong....Living my life and looking forward to a much needed vacation. One thing I learned the last six years is to start saying no.  I have been taking care of everyone my whole life it seems ...started when I was nine and my sister was born. I was a young single parent of two, on top of that.  My Dad and Mom were also part of my care giving lifestyle.  Now, I have stepped back. We need to take care of ourselves and we forget sometimes. I didn't even realize I had cancer when I was caring for my father since all I did was run run run...
I do not regret any of the time I have spent being a caregiver but now it's time for me.

Saturday, March 1, 2014

New news..New tumors .

Hi everyone. Life has a way of throwing curve balls.  I just had one thrown directly between my eyes.
I recently had my annual PET testing and CT scan and I was told that a small node was found on my right lung .  I asked my oncologist for more testing and he said I could "wait another six months".  I refuse to take that course and I am following up
With a new oncologist and thoracic surgeon .
My father passed away from lung cancer .  The word "wait" does not exist in my vocabulary.
It's time for action.

An update..I went for my colonoscopy last week and the biopsy shows that  I have four nodes, one is precancerous.
They removed them  and I pray that it was in time ...I eat very well but stress is a huge component ..I didn't stress about my breast cancer but I have noticed that I have not been taking my life day by day.  I stress about the future. Time to stop that behavior since it only hurts me.

Saturday, February 8, 2014

"To everything turn, turn turn ~there is a season ....I swear it's not too late"

March 6th is my new birth date ;
six years of cancer free living ~On that date I had my
Mastectomy and reconstruction birthday ..( I just hit my eight year lumpectomy surgery this week.)
It also happens to be the day my daughter, Cara Podenski is scheduled to give birth to her first child ... I see this as a sign . A miraculous beginning . I have called my daughter over and over, left messages and she has never returned or answered my calls. over the last 5 years.
I do not block my number because I am not giving up hope that she will answer . I do not know of anything I have done and I have no answers.. I was even told I would be arrested if I came to her Wedding. Although I keep trying, I can't be the only one to mend this relationship between mother and daughter. What could I have done so terrible to deserve this exile. Nothing.
I just know that I am to be a Grandmother, and I earned that right, but I also want my daughter to exorcise her demons for her mental and physical health. Unless she accepts that I'm not going away, she will be hurting her child and he/she deserves to have me in their life . I deserve that, and I won't stop trying .
I'm not perfect, but I am human and I hurt. I need to conjure up all my strength this coming month... I hope no one experiences this... It is so painful ..I will never accept that she has "Forgotten" her own mother. I will never forget I have a daughter.

Thursday, July 18, 2013

Matthew West - Forgiveness (Lyrics)

tell me how to reach the unreachable...
The prisoner that it really frees is you!
I hope that my children Cara Podenski and Jason Scarano realize that I have forgiven, now let's all try and forgive together.

Wednesday, January 18, 2012

Skipping the Light Fandango

"We skipped the light fandango
turned cartwheels 'cross the floor
I was feeling kinda seasick
but the crowd called out for more..."
-A Whiter Shade of Pale~ Procol Harem, 1967

Time has been good to me and it is on my side.
Since I last updated, I have had surgery to replace the "ruptured" implants. My silicone implants were replaced with saline ones and to my shock, I was told by my surgeon with a snide tone that they were not ruptured. He proceeded to tell me that he could not find a leak, but the MRI scan said otherwise. He than accused me of having pre-breast reconstruction implants and that the silicone floating in my chest was from a previous rupture. I was unabashedly upset and he said that there was no other explanation. I protested and told him that was not the case. I was outraged the more he persisted. I have to admit I was in tears after he removed the bandages.. Months lapsed and a few stitches were not dissolved. The cosmetic look was not to my standards. My new plastic surgeon concurs. The ordeal I experienced was not without feelings of anger, grief, and outrage. What was thought to be silicone rupture, was not detected. This is a very rare phenomenon. I am now in University of Washington files. My radiologist found this to be unprecedented enough to send my results and PET scan to the prestigious Medical Center. I had interaction with this hospital in previous years. My doctors were based out of that facility. I am hopeful that they will find some answers.
My new cosmetic surgeon was not surprised at all by the surgeon's behavior. He has apparently exhibited the same disturbing behavior to other patients.
I encourage women to do research before selecting a surgeon. I asked around, but did not do a search to see if he had lawsuits against him. Big mistake, and unfortunately I have found that many patients do not report their negative experience. It would behoove you not to investigate further. I have learned that lesson the hard way.

I am at a precipice. Do I face surgery again? Do I live with my saline implants or have yet another surgery? I have chosen the least invasive of the two, for now.

I am very grateful that my recent ultrasound this month, was "unremarkable", and that is positive news. I am learning to stop worrying. My mood is ecstatic but still cautious and encourage all breast cancer survivors to have a team that you can trust. If you have a gut feeling go with it. It is so important to listen to your instincts. Do not suppress that nagging doubt. Most likely you are correct to be concerned.
I passed My fifth year anniversary since my first breast cancer diagnose and I find myself reflecting on the last few years. I have determined that positive attitude is very therapeutic in recovery. I have learned how to stay away from negativity and negative people, yes even family can put up road blocks, but it is my choice whether I allow it into my life. Once again, I will reitierate, that we all have choices.
The word "grateful" is an understatement. I am learning to live for the moment and celebrate all the little things that can easily be taken for granted.

 Carpe diem.

Monday, November 29, 2010

Silicone implants CAN leak, seep or rupture.

Regrettably I don't know how but discovered today that my blog has been tampered with and this post and one other are gone. 
I will attempt to recant my ordeal and the sadness that comes with the realization that once again I had to undergo major surgery ...It happened slowly in Washington State in 2009 believe it or not..I started seeping silicone through the outer layer of the Mentor implants. 
I recall asking my oncologist to check me out over and over and numerous ultra sounds were done but nothing was found because of the testing technique.
Finally over a year later of constant uncomfortable sound in the back of my head saying keep pushing..there is something wrong.
When I moved to GA I found a surgeon that almost seemed that she was pacifying me by allowing me after undergoing another ultra sound that maybe there was something to this dark gloom that I kept feeling.  I honestly don't know how I knew but I remember the hospital was a small private LDS funded facility..Very soothing and a bird cage in the lobby that seemed to be saying..You are OK  just know you are safe. The birds inthe cage so were so bright and cheery and it helped me get through to the next stage. 
This type of MRI is a very intensely accurate machine., but unfortunately in this area there are not many hospitals that have this MRI breast check machine. It was a bit intense as I climbed up to the table and placed my breasts in the slot that were shaped like cups to hold me in place and from there the accuracy of the images are easily read.
I had to stay in one position without moving for over 90 min.  I had a bit of Xanax to relax me or I do't know how I could have stayed so positioning was very uncomfortable and the IV that I had in me to replace the radioactive isotope tracer is always a strange feeling and some say they can taste metal in their mouth..for me since I have a bladder disease also,I feel it there.  IT isn't painful..just a bit different.Do not be afraid since this is the best possible way to check for any problems with your breasts especially with implants.
My radiologist had been doing tests on me and we wee very friendly to one another and we talked about my upcoming trip to Italy.  She said you need to go ...I have heard that from all my doctors but life keeps getting in the way.
After my test I went home and the toughest part is the waiting.
I received a call directly from my radiologist the next day after a sleepless night.
I know this sounds strange but when she said "stephanie, they are both ruptured," I was relieved..and started to cry..why? it was a feeling that I can't describe but a weight had been taken off of me and another journey would begin.
That is when the nightmare began again.  
All I can say at this point was that I kept hearing the words free floating silicone in my body and wanted them!  These touted Mentor implants were indeed not what they professed to be.
I was referred to a surgeon and it was a very difficult surgery since he was not a friendly or empathetic surgeon   I did't care at that point since he was the one that my surgeon referred me to and he could take them out and replace them with saline ones and that is all I cared about ...getting them out..
I went back for my after surgery check and one of the stitches was not dissolving and was painful..I kept doing as the nurse told me by massaging it but the last stitch was a large knot and I felt as if he had just sewn me up if I was a turkey on Thanksgiving day. I was not a happy camper when I came in for what would be my only after surgery appointment.   The surgeon was in the room with me and my significant other.  He came in and didn't even sit down.  Took a look for one sec it seemed and than proceeded to tell me that the implants were intact. I said what do you mean the MRI clearly showed I had silicone inside me.  "yes, he said..I know that that silicone didn't come from the implants I took out!"/i was stunned.  What are you saying to me I blurted out. I sat up and looked him straight in the eye and he said "you had implants before apparently and didn't tell me that ?" are you serious..I felt Tony starting to walk over to him ...I knew he was about to possibly say or do something so I quickly said I had beautiful breasts before breast cancer!  I never had implants.! Tony was starting to get ready to walk toward him and he said "I call it as  see it"...I quickly let out a scream and ran out of the room..I was devastated.! Tony ran out of the room after me but not before he said what kind of doctor he thought he was for saying such a horrible thing.
I didn't find out until weeks later when my radiologist called me to tell me how she had attended a conference in Seattle and ironically enough that was my medical center where I had been in 2009 for severe PTSD brought on by the breast cancer and most importantly the fact that I knew that there was something wrong and had been to many surgeons and doctor for the second tumor and the silicone leaks just to be told that they thought I was over reacting. it turned out that she addressed the conference with the question re my silicone leaks and the answer she received was that the material that encapsulated the silicone inside seeped through was that simple.  The material had seeped through the skins of the implants.  I was a guinea pig I guess you could say and I don't know how many other women have had this happen.
I am now living with free floating silcon in my upper chest...some has moved to under my sternum.  there is no way to remove it.
I do know after much research that the tiredness I have been feeling for the last three years has intensified from when I was diagnosed with fibromyalgia. Apparently the silicon contributes to the disorder so I now have a more intense form of this immune disorder.
When in doubt don't let anyone tell you different. I am living proof that once again I knew my body.
Another day and another tale to tell that hopefully will help other women.