Ode to my Lost Hormones

A breast cancer diagnosis, brought questions flooding in,

After the process was explained, one tiny question remained,

scores of specialist could not answer, I was scared silly of what was to come.

 

They called me “Lucky”, to have the tumor caught so early,

The treatments that followed were easy to get through,

Thanks to my cousin, Cindy, for sharing her secrets of survival,

What could have been unbearable, became tolerable,

Thanks for the info cuz, it was much appreciated.

 

Once the lumpectomy was over and the chemo began,

I found myself awestruck of the millions that have gone before me!

all  of the fight, strength, love and passion that has gone before me,

I persevere to continue the fight!

 

Thank you, Ladies for the inspiration to keep going.

I am a survivor, I refused to let this bring me down.

My chemo was coming to an end and I knew radiation was the next step,

 

Little did I know my journey was just beginning.

My sweetheart became seriously ill and needed immediate surgery to survive,

The same night my father went home to be with the Lord. As Barry slept, I told him to be strong,

I knew he was a survivor, Several family members and our Pastor helped me through the hard parts.

 

Life started to calm and a routine began, while Barry was being cared for at the hospital,

I left daily for my radiation treatments and returned just before supper.

Our Jeep had to be on auto-pilot to get me, from the hospital and back daily.

 

Once the oncologist suggested we turn my ovaries off,

first thing I pictured was a little switch that needed to be turned on each ovary, she had other things

in mind, once I knew my options,

 

I took the injection until I could schedule the surgery needed,

I knew the minute I woke from surgery, that my Doctor had been successful.

My first official hot flash was in the recovery room! 

 

The Estrogen and other things produced by my ovaries are now gone, the surgeon had a wee surprise for me,

Soy can mimic Estrogen in the body, soooooooooo…..no over the counter remedies for me!

Now the brown spots, the “hot and cold” flashes and mood swings were just around the corner,

On March 28, 2014, I was thrown face first into MENOPAUSE!

 

Writing Through Cancer: When life hurts, writing can help. Weekly writing prompts for those living with debilitating illness, pain or trauma.

Stories—the small personal ones that bring us close as well as those of the larger world—foster compassion.  In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, [you] help heal each other’s spirits.

–Patrice Vecchione, Writing and the Spiritual Life

Growing up, I was a shy child. As the years went on, I came out of my shyness a little, but as I grew older and started getting serious about life the shyness reappeared in certain situations.

I think we all go through an awkward phase as a child, I’d say I hit mine around the sixth-grade or seventh-grade. The summer I turned twelve years old, I shot up over six inches in height. Mom thought she was purchasing stylish glasses for me, when truth be told, they were the ugliest glasses I had ever seen.

Anyone with an opportunity and a mean streak took it upon themselves to let me know how gawky and goofy I looked in those glasses. As I got taller, I was the second tallest girl in my class and the first girl to develop in all the right places. I was taller than everyone in the class. That just added to the fire.

Another thing that added to my “nerdy” status is that I developed allergies as a child. I grew up when they didn’t know how to treat allergies. I was always sick, had a lot of food allergies and did a ton of throwing up after meals. Not so easy to make friends when you are literally the snotty girl, always scratching and have the ability to vomit at the drop of a hat. Kids can be so mean. I was sick so much, mom thought I needed to see a doctor daily. The ironic thing about mom running me to the doctor constantly, was that the brain tumor I have has been there since I was a child. I was sick, but not for any of the reasons she was taking me to the doctor.

All of these, should have been good things, but the kids I grew up with saw a vulnerable girl they could hurl their latest ammunition at. It was like some bully kept a book and said “let’s pick on her today.”

One stupid new girl decided she would target me on her own. I became her pet project at her new school. She took particular dislike to my glasses. I was called “Four-Eyes” so many times in the eighth-grade that I decided to let her foolishness stop bothering me and decided to kill her with kindness. Sometime in the night-grade,  the bullying stopped. The new girl, never turned nice through four-years of high school, but it didn’t matter. I didn’t let her get to me.

I took my classes, did my school work and survived high school. Most of us do. What you have to remember about bullies, is that they are just jealous or sometimes it could be as boy or girl who is sweet on you and doesn’t know how to handle their own feelings. Be patient growing up, God will get up through it! I went to college away from everyone I had known for years.

After graduating high school, the shy girl came flying out of me again. Nursing school put me into situations I didn’t know how to handle, so I did my best. If I was uncomfortable in a situation, I worked my way through it. After I was married the first time, I ran into people here and there. What I noticed the most, was they acted like we were life long friends. God says to forgive and I have forgiven.

Doctors are not kind to new nurses or old ones at that. My first nursing job, opened my eyes to how crude the medical profession can be. You would not believe, what goes on behind the scenes, at some hospitals here in Georgia. In all my life, I did not realize how ugly people can be to one another. I grew-up quickly.

After my first husband and I divorced, one of my first jobs as a single woman was at the local jail in my hometown. The saddest part of that job, was seeing more people I went to high school with in jail than on the streets of town. A few were hard to believe, but others I had seen in trouble for years. I dated a deputy for a while, and he got a bit stalkerish. Someone in jail, that I had known for years, stood up for me. He did the right thing and said something when the time was right. I never got the chance to say thank you! Thank you, Joe! I know he’ll never see this, but at least I have said it.

I went through many jobs, that finally lead me to the career I was meant to have. I stayed with that career until I was forced into retirement by a nasty brain tumor called a gangliocytoma. I would later discover the tumor was just a symptom of a genetic disorder called Cowden Syndrome. Sine that diagnosis, I have survived Thyroid Cancer and I am dealing with breast cancer. Every month, I am in some doctor’s office being probed, prodded or x-rayed.

Note to all doctor’s that do lumpectomies, tell your patient’s about the fluid build-up possibility and the possibility of acting like a leaky pipe under your arm. It would make life after lumpectomy less stressful.

I’m getting tired, but I refuse to let this mess get the best of me. God has a plan for my life, otherwise I wouldn’t still be around. It is not my place to question that plan. I have tolerated this breast cancer episode better than things in the past. Either I am tired of fighting, or learning how to give it to God finally. I’ve prayed about the subject. It must be sinking in.

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Coping with a Rare Disease and What It Can Do to Those You Love

If you have followed my blog at all, you are aware that my family and I have been through the wringer over the past several years.

Barry‘s stroke was a huge surprise. He is alive and kicking today, thanks to modern medicine and the quick responses of the local EMS, emergency room and Emory University Hospital in Atlanta, Ga.

Our journey started over four years ago when I was found to have a brain tumor pressing into my mid-brain that needed removing  quickly. If you don’t know much about the brain, your vital function are regulated in the mid-brain.

Long story short, the brain tumor was just a symptom of a genetic disorder called Cowden Syndrome. It truly isn’t a big deal to check. The trick is to stay vigilant and organized with check-ups and diagnostic testing. If you don’t something can sneak up on you and bite you in the honey.

Cowden Syndrome is a mutation of the PTEN gene. It makes you body unable to stop formation of certain types of tumors. The tumors that develop are  benign or cancerous. They can also appear quickly.

I have already been through three episodes of issues from Cowden Syndrome and survived each without major issue. I am about to tackle the fourth. We were lucky to catch this one early, like one other. Hopefully this will be a breeze like a few others.

I can now state that I am not only a Thyroid Cancer Survivor, I will soon be able ta add breast cancer Survivor to that list. I am not sure I like making a list of the cancers I have survived, but I’m glad I’m still here.

As long as I follow-up with my list of 20+ doctors monthly as they ask, I can keep these issues under control without adding another cancer to the list.

Since my condition is rare, I have joined a research study on Cowden out of the Cleveland Clinic in Ohio. Hopefully this research can help someone else breeze through this mess of a disease. Currently, 1 in 200,000 thousand people diagnosed yearly.

Barry has been my rock. Even after the stroke. He’s hanging in with me. We take care of each other. My mother has been with us almost a year. Her health is declining a bit. Barry and I take care of her issues, as they come up. Mom is having trouble dealing with giving up her independence and she isn’t taking it very well.

Our local friends called and came around for a while, but have slowly disappeared from the picture. It really hurt Barry’s feelings to start with, but he has since realized that people have trouble dealing with change and they don’t know how to handle our illnesses.

What has hurt the most for me, is the change in my older sister’s attitude toward me. I called to tell her I have breast cancer, she stated she was speechless and I have not heard a word from her since.

After I had brain surgery, her attitude changed because of my communication problems. We used to talk at least once a week. Now that I am healthier, her attitude has not changed. I love her dearly and will do anything in the world for her. She is my sister, that will never change.

When I attempt to discuss it with her, she denies everything. I miss what we had. Barry thinks her attitude change is because of him, I tell him continuously that Sandy isn’t like that. My younger sister and I are closer than ever.

My mom does her best to deal with my illness. She starts to cry every time she is around me and looks at me as if it is the last time she will ever see me. I talk with her and ask her to help me get through life. I told her I need her strength, not her tears. She’s getting better. My nieces and nephews all treat me the same.

Barry and I have found a church home. Mom goes with us. The church has welcomed us as if we had gone there for years. They offer many areas of ministry that gives us many choices to volunteer and get involved. We all enjoy Victory Baptist Church in Loganville, Ga.

At GMC

At GMC

UPDATE…UPDATE…UPDATE…UPDATE…UPDATE…UPDATE…

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It is with since pleasure that I post the facts I received today at my doctor’s visit. They caught my breast cancer early, Stage 1 Invasive (Hormonal) Ductal Carcinoma. It is definitely cancer, but it was caught early enough to not be a big deal to deal with. I’m having surgery on the 30th to remove the lump. Once the lump is out, she can tell me what type of treatment I need.  I told myself, I wouldn’t spend the weekend worrying myself sick about the diagnosis, but I apparently did subconsciously. When we arrived home after the appointment, I slept for six straight hours. Me thinks I was stressing a little more than I realized.

Personal Prayer Request

I’ve known this possibility exist for some time, but I was busy being positive this wouldn’t happen that it snuck up on me.

I found out I have breast cancer this morning. I can’t decide how I feel at the moment other than a little mad. I haven’t been able to do more than shed a tear or two, but when I feel the crying coming on, I’ll lock myself in my bedroom and let it fly.

The past few years, dealing with Cowden’s Syndrome and all the health issues it entails, I’ve felt like there is no way I can get cancer. Now I have to change my attitude to there is no way this cancer is going to get me! I’m actually angry. I guess that is where my fighting spirit comes from.

I’m worried about Barry and the stress he is putting himself through.This could have waited another year. He’d at least be two weeks post-stroke. I’m trying to be strong in front of him. He doesn’t need the worry. But I need him too!

Well, I need to write my usual weekend posts, so I’ll stop babbling.

If you are a praying person, please add me to your list. I need as many prayers as I can get. Thanks for your support!

I Wanna Run Away!

Please, someone tell me when it is okay to run away. I’m not sure how much more I can take before I crack. 

I live the “Life of Riley“. Honestly, I not sure what that means. Was it a TV show? Radio show? Cartoon? I’m going to look it up. The situations I’ve heard it used in usually involved someone having it made; not in need of anything; someone spoiled rotten. All of the above, at times, can describe my life.

I live in a beautiful home with the perfect husband and family pets. We have one boxer and one fish. One step-son that keeps his distance.

My husband and I are raising my mother. It can be a challenge at times. But we make it.

We are far from well off or rich, but we are comfy. A lot of people today can’t say that. It really hurts Barry and I to see others struggle. We help when we can, but keeping up with medical bills will eat you alive. 

Since 2009, Barry and I have run from doctor to doctor trying to figure my illness out. It is starting to feel like a waste of time. Every time I see a physician, something else is wrong.

Is this a never-ending battle? Is all the running around doing a bit of good? I guess I’m a little tired of being sick. I feel like my life is falling apart and I’m not sure what to do.

That doctor, last week, really threw me for a loop. Just uttering those 2 little words has my head in the toilet.

It was like the day the doctor told me about the brain tumor. “Oh by the way, you have a brain tumor.” That is how he told me. He added a few other things to it, but that was enough to shatter my world. My head was in a spin then, and it is spinning like a top now.

I’m not going to do anything stupid. God has kept me around for s reason. I have too much life left to live to do anything stupid, I’m just trying to write this down to see if it will shake me out of this funk.

I should be sleeping . Big birthday party tomorrow. Going to be a long day, I need my rest. Barry is snoring in the chair next to me as I type. Maggie is snoring on the couch. Maybe I should follow suit and go to sleep. Maybe I’ll feel better in the morning. 

Hope everyone has a good weekend. I’m trying to turn mine around. Be sweet!

My New Least Favorite Words on Earth: Incidental Findings

Dr. M, my now urologist, seems like a very good doctor with a great personality/bedside manner. My appointment today went great. The kidney ultrasound is good, with one little issue to follow. Otherwise Dr. M. says my kidney’s are beautiful. Awwww, how sweet. They better be! About the only organ I have left that functions correctly.

What gets me about Cowdens Syndrome is the unknown. Today, I’m told I actually have an organ that is functioning properly, but we need to watch this “one” little spot. We want to make sure it isn’t something forming that shouldn’t be where it is. So, my roller coaster of doctors continues.

On top of the little spot that needs watching on the right kidney. It appears there is an incidental finding on my liver. He would  like to schedule an MRI, to get a better look. So, more tests, more waiting and more unknowns.

I feel like I am fussing about what is going on in my body. I truly believe that Jesus died to save us from our sins. I believe that the Good Lord has a plan for us and we shouldn’t question that plan. My life is in his hands and I am not exactly how to hand my troubles over to the Lord and not worry.

After my appointment today, I wasn’t what I would call questioning things, but I was so frustrated with the news that it brought me to tears. When I got to a private place, I asked the Lord for the grace and strength I need to make it through all of this news. My fears eased.

It is just so incredibly hard to deal with all of this. Today, I felt like the robot from “Lost in Space“.Turning in circles, arms flopping, thinking, “fix me Will Robinson, fix me!” If it were only that easy.

 

Our 200th post, There is a link to the page, but I also put the post below to avoid confusion

 Click the link for our 200th post:

https://gegebearbear.wordpress.com/200th-post-can-you-believe-it/

The 200th post is below, but I’m gonna leave the page up too. I have removed any mention of a certain person who shall remain nameless. Enough said.

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We thought this post required something special. I find it difficult to believe we’ve been blogging since September 8, 2012! We have been on a journey since that date, but we are holding on strong and closer than ever.

This blog wasn’t our idea, but we have thoroughly enjoyed compiling information for post together. It truly has been therapeutic for both of us. Who would have thought that a counselor, specializing in neurological issues, would know what they were talking about? Maybe that was what we were paying them for? At least our insurance was…..

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We have done so well. Blogging has brought new friends into our lives and seen a few leave. The good seeds continue to take root as the friendships flourish. Others are like annual flowers, they are incredible at first then the heat of the sun fades their colors. Then you pull the annuals and throw them out to put new color in your garden. It is a shame all flowers and friendships cannot be timeless.  Enough said on the matter.

Barry and I continue to enjoy each blogger we have met on WordPress and stay sorrowful over those that did not work out. We have met some incredible people, who have taught us both a lot. Papazilla actually got me to debate a topic in writing, which is something I avoid like. I do not speak well, so there are certain things I do not freely take part in.

I have a rare genetic disorder. I felt so alone dealing with my illness at times, then my friends and family remind me I am not alone. The internet is an amazing tool to use to connect with people you may not meet normally. Barry is wonderful and my best choice to discuss my disease with. Thanks to everyone for being wonderful!

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BrainTumorThursday on Twitter has become a weekly part of my life. When I can take part, I do. When I can’t, I make sure one of my posts, about a brain tumor issue, is on the page. There is such a huge need for funding for research. Brain Tumors kill too many people yearly. I’m including a link to a national foundation for when you would like more information.

Twitter link:

http://paper.li/TumorWarrior/1343039984

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http://www.abta.org/about-us/

http://www.sbtf.org/home.html

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Two groups of hardworking people working to stop the pain of brain tumors. Please check them out. Barry and I take part regularly in the SBTF run/walk to raise money in Atlanta. We enjoy the get together. We also take part in a monthly support group for brain tumor patients. Very helpful group, when figuring life out after a brain tumor.

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http://www.emoryhealthcare.org

I’m including the website for the support group below, check them out. Very enjoyable group.

http://www.neurosurgery.emory.edu/BTSG/index.htm

Tons of extremely hardworking people, check them out!

Check out #BrainTumorThursday on Twitter. Just do a search. Do not forget the hash tag.

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Other health issues in constant need of funding are mini-strokes and strokes. As a nurse, I know what to look for and what they look like when occurring. Many people have health issues happen today and are clueless. They have no idea what is happening or whether to consider it an emergency or not. It is truly sad in my eyes that we are not more educated about our bodies and how we should respond to them when they scream at you,

 ‘HEY, I NEED ATTENTION!’

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I’m so glad I was home with Barry when his stroke occurred. He’s an extremely healthy, highly intelligent man. He did not have a clue or remember anything past us getting out of bed that morning. If he had been home alone, he would not be with us at the moment. God is good and decided he wasn’t finished with Barry. He helped me get the right people on to Barry, then the doctors and hospitals took over. New technology saved Barry’s life. Emory University Hospital had Barry in the procedure room before I made it to the hospital. I thank the Good Lord above for guiding the doctors in the proper care Barry needed. Although, his stroke continued once the clot was out of the picture, Barry is alive and thriving.

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http://www.heart.org/HEARTORG/#mainContent

http://www.strokeassociation.org/STROKEORG/

http://www.stroke.org/site/PageNavigator/HOME

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Since starting our blog, our lives are finally calming down. My illness is settling into a routine of check-ups and Barry is getting stronger each day. Mom is even settling into our routine(Surprise, surprise)

Barry and I are about to embark on a new voyage in our lives. When he retires, we will have time to run around and do what we want. Travel; be lazy;  work in the yard; go to church; visit family; who knows, maybe we will see a movie at the theater…..I have a huge list of ideas, I just have to talk Barry into it. Barry will have a tough time adjusting to staying home. He has driven downtown(Atlanta) to work for over 30 years, sleeping past 6am is already a challenge for him on the weekends. After 9 years of marriage, I can say one thing about Barry L. Baynes. The sweet man despises change!

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If you do not know CPR, LEARN IT! You may need it some day!

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Round Four Finale

MM900295156Biopsy results are NEGATIVE! NO cancer. They still want me to have an MRI, because they do not have a solution for the problem. But no cancer!!!!!!!Thank you, thank you, thank you!

Saw endocrinologist today about thyroid scan. It was clear, but there is a lymph node she wants to follow. Which means she wants to schedule a thyroid scan! I hate the thought of another thyroid scan. You have to put your system into hypothyroidism before the test.

Last time, they were out of the injection to do this for you and I had to quit taking my medication for 3 weeks before my body converted to hypothyroidism. I was so weak, I could not walk. I was having to use my wheelchair to get around everywhere.

But I’ll do what I need to do to make sure I stay cancer-free. I may not be happy, but I’ll do it. I’m hoping Thyrogen is available and taken care of in 2 days.

Get results of the MRI on my left knee, next Tuesday. I have the feeling surgery is around the corner. But again, I’ll do what I have to do to stay healthy.

I can’t wait to get back to my full exercise routine. I miss it! Gonna light a fire under Barry’s fanny to get him moving with me. We may even get Maggie in on it!

Well, I’m putting this tablet down for the time being. We have to run an errand. Round 5 starts next week, with God leading the way. I hate to think where I’d be without the good Lord guiding us through this mess. Still taking things one day at a time. Thanks for your comments and support.

Round Four: Thyroid Scan Results/ Biopsy results

At 11:30am, we will be headed to the next appointment for the week. I’ll get my official thyroid scan results today. It’s in God‘s Hands as usual, but I am feeling rather positive today. The Neurosurgeon‘s visit has really lifted my spirits. Hopefully, Dr. M. will deliver similar news. I also received a message from the breast center, telling me she had good news about my biopsy. I left a message for her, so hopefully I will hear from her soon.

Have a good afternoon everyone. It was 60° yesterday and in the 30’s today with possible snow on Saturday. You have got to love the south. Daffodil’s are blooming already. Spring is coming. I can’t wait!

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