Tag Archives: Cowden syndrome

Dreadful Doctors

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My title is not fair to all doctor’s. I enjoy the physicians I am currently working with. The dread I am referring to is what they are going to tell me or ask me to do.  Since 2012, the neurologist I see thinks he needs to change the medications I am taking, just to see if something new will help.

What I have discovered and verbalize to them is “NOTHING HELPS”.  I feel like a lab rat at times. Actually had one physician say I should feel honored to be in his presence because is that good! Needless to say, I refuse to ever see him again.

I have enjoyed working with the rehab center and the cancer specialist. They try to cover every aspect of care a patient may need. They offer incredible services at Winship.

After everything, we have been through, it is wonderful to be treated special after certain diagnoses. The sad part is the numbers of people in and out of the doctors offices at Winship.

One of the things that I dread yearly, is my thyroid scan. It is such a long process and it takes all week just to get to the point where the scan can be done. For some reason, My Protein levels are staying elevated and thyroid cancer is playing hide and seek in my throat. The last PET Scan showed there is still something in my neck. Hopefully, this will be the last treatment for a few years. This is only the fifth time since 2009.

Personally, I am ready to run away from home. I put a smile on my face and keep going. I refuse to let this or anyone get me down. I need to take care of myself, Barry, Maggie and mom.  I am faithful the the Good Lord will be by my side through the next week. It has been a bad couple of weeks and it is time to turn things around. Have a joyful week everyone!

Ode to my Lost Hormones

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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!

 

“Worshipping the Lord in Song” (if you can call what I do singing) by Jill Baynes

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Some may call me silly, but I choose not to care. I cry at Chipmunk Movies, now that is silly. I cry when a sweet commercial is on television. I’m silly….take me as I am and deal with it!

In 2009, my life changed forverer. I understand I am a child of God and my body is part of God’s plan. I had to learn that God’s plan is different for all and we are unaware of what our plan entails. The changes I endured, due to brain surgery, are all part of that plan. The Good Lord gave knowledge to the doctors to keep me alive; in my book, that means the Man Upstairs is not finished with me yet.

A dear friend spent 6 years attempting to get Barry and I to visit her church. She never gave up, she was never pushy; always encouraging. We put her off due to our business.

God had to really shake our lives up to get us in the front door. I had been through the brain tumor issue, when Barry shocked us all with a stroke; one year after aortic valve replacement surgery. By the grace of God he survived with minimal difficulties.

It took Barry’s stroke to open our eyes. We chose to close the business and focus on us. Barry continued to work, but eventually retired. Work did not do good things to his blood pressure.

We have been active members at Victory Baptist in Loganville for close to 2 years now. Today, I decided it was time to take a new step at church and joined the choir. After the brain tumor surgery, I would try to sing and found I was unable to get a word out.

Several months ago, l realized my singing was improving. As I sang with the congregation, my voice had come back and was growing stronger! I waited a few months and spoke to the choir director. He said when I was ready, just to let him know.

Well, this morning, the choir made me feel loved and welcome, as we waited to rehearse before the morning services. It felt incredible to be part of the group that makes such beautiful music each week. Of course, half-way through the first song, I saw Barry smile up at me and I cried…….

Writing Through Cancer | For the Week of August 4, 2013: Can It Get Any Worse? Part 2

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Part 2

My strength comes from the Lord, my family, and my handsome husband Barry. I draw a bit of strength from each of these people. Together, day by day, problem after problem, we grow stronger as a group. The easiest way to deal with issues is one at a time, one day at a time.”Hope springs eternal”, from Alexander Pope, An Essay on Man. That quote says it all. Keep hope alive.

Barry and I are adapting well to dealing with our illnesses. We had to get re-acquainted with each, but everything has worked out. He had to retire.  The stroke left him unable to handle working full-time. Barry  made adjustments around to house to aid me in normal daily function. He helped Libor and Jonny build a porch and ramp off the front of dad’s home. Worked beautifully.

There is no course reversal for my illness. There is only management and learning to cope. You keep up with your yearly appointments, take your medications as prescribed, eat healthy, and exercise. Cowden’s Syndrome is a rare disorder about a mutated gene in my DNA. To learn more, follow the link. http://en.wikipedia.org/wiki/Cowden_syndrome is related toLDD: which is just a symptom of Cowden Syndrome. http://en.wikipedia.org/wiki/Lhermitte%E2%80%93Duclos_disease

No one looks forward to losing a loved one. I for one, can definitely say, I am not ready to lose my dad, Barry lost his father at a younger age, so he is helping me deal with the emotions, while I take care of my health. My sister’s are in the boat with me. We’d like to keep mom and dad around forever. But that is not in God‘s Plan. Only he knows when it is our time to be with him. So, One day at a time. Slow as we go, enjoy every minute we have.

 

The daily prompts I write from each week come from the following blog by Sharon Bray:

http://writingthroughcancer.com/

Follow the link to her blog. She is incredible! Thank you, Sharon…..Jill Baynes

Tomorrow

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The doctor has decided that my left knee needs replacing. At the moment my left leg is swollen from the ankle up to my hip. I look like I have a cankle. Since my brain tumor surgery, I haven’t been light on my feet.

The falls I have taken, since brain surgery really screwed up my balance, ha done a job on my left knee. I’ve been incredibly lucky and only ended up in the emergency room one time. I had forgotten how bad getting stitches hurts! But all the falling has taken care of any useful cartilage in my knee.

With the breast cancer, I’m still waiting to hear which treatments I will be getting. So, I am sure knee surgery is going to have to wait until after my treatments. I’m making a list of questions, for both doctors, I need to add that to both list.

This is crazy, I’m putting my health issues in a que to be handled in order of importance. Cowden Syndrome strikes again!

Wednesday afternoon, I am having a cyst removed from my right wrist. I’ve had wear a cast a few times when the cyst was enlarged. Apparently to get it to stop, it needs removing. My right hand is my only good hand. I need to keep it in shape as long as possible. I’m not looking forward to a cast or brace again, but I’m a tough cookie. I can handle it! Wish me luck!

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Should we take a vacation or rest and heal?

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Having breast cancer is such an issue. To start off, everything is rush, rush, rush to get a diagnosis. They will put you through a mammogram. ultrasound, MRI, and biopsy in one afternoon. Making you think you have some horrible problem that needs to be removed NOW! After all this, they schedule you to see a doctor a few weeks out. They freak you out about the possibility of cancer and then the wait is on.

When you get an actual diagnosis and the rush is back on to see a breast surgeon. You see the doctor and the rush is back on to remove the tumor, at the surgeons convenience. Once that is over, the weight is on again. Then you receive a call and are given date to see oncologist. The Radiation Oncologist at 11am and the Medical oncologist at 3:30pm. All in the same day, but there is no way to get the appointments closer together. After packing for a day at the hospital clinic, we head to the second appointment. They had a no-show and we got in early. It was nice to get in and out of there quickly.

The one thing I didn’t enjoy was listening to the same speech from two different doctors for over an hour each time. One doctor even wanted to know if the other had explained properly a certain lab test that can decide my need for chemotherapy or not and they both asked if the surgeon had gone over anything with me.

Without asking for our response again, We were given  appointments to get ready for radiation treatments, then found out at the next appointment, it would be hurry up and wait for blood-work ordered and a test on the tumor they removed. I feel like I know absolutely nothing about what is going to happen for my treatments. Better yet, I have an idea of the treatment, I just have no clue when the treatments will start. Maybe. by the end of the summer, I’ll have an idea when this will be over.

I have to remember this is in God’s hands and I need not worry. He’ll make sure things are under control. Take one day at a time. In this waiting period, should Barry and I rest and take time to heal or should we take off somewhere?

English: pink ribbon

English: pink ribbon (Photo credit: Wikipedia)

 

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Daily Prompt: Too Big To Fail

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Tell us about something you would attempt if you were guaranteed not to fail (and tell us why you haven’t tried it yet).

Since brain surgery, I’ve had kind of list of things I’d like to do. I wouldn’t call it a bucket list, it is more of a list of the things I’d like to complete in my life time; or things I’ve started and never finished. There are a few items on my list that would qualify for a bucket list, but I am not in need of a bucket list. My list definitely needs to be “The Things I Procrastinated over and Want to Finish”.

Let’s get to the point. This daily prompt made me think of that list. Number One on my list is taking a ‘Zip-line‘ tour. I love the outdoors,gardening, hiking, fishing, boating and all other fun outdoor activities are out of the realm of possibility since becoming disabled. Barry has adapted a few household items to help with my love of gardening and we have narrowed hiking trails down to the safe ones (I never go alone). 

The thing is, I long to be high in the air on a platform, basking in the warm sunshine. I want to reach up, grab hold of that little bar,  and slowly step off the platform. I want to feel the wind on my face and in my hair, I long to feel the sun warming my skin as I glide through the trees, I want to look down at the forest and imagine all the colors are a huge quilt laid out beneath me; I’d love to pass a bird in flight and say “Boo”! I want to bask in God‘s creation.

My health is keeping me from following my dream at the moment.  At the moment, I am not physically capable of handling a Zip-line tour. I’m dealing with breast cancer, which is turning into my latest stop on the Cowden Syndrome trail. I have a genetic disease that is slowly eating its way through my body. Putting off my zip-line tour this time is only the 7th time we have done so. Hopefully, this fall, I’ll be healthy enough to go for a little tour through the trees. Wish me luck!

English: A zip-line over the rainforest canopy...

English: A zip-line over the rainforest canopy. Taken January 4, 2005 in Costa Rica at the Arenal Paraiso Hotel’s zip-line course. This course requires self-braking using a special purpose-built reinforced leather glove Photo taken by Ken Haufle. Category:Zip-line (Photo credit: Wikipedia)

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I felt so lost…

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I felt so lost yesterday, this morning I realized I stayed so busy yesterday, that I never wrote a post. My father had a rough Sunday night. We received a call at 9AM from a friend of Pop’s. He had found Pop unconscious in the floor of his bedroom. He called 911 and Pop was taken to Athens to the hospital. Sandy was on the way when Kristie called. She was working and could not leave. Barry, Mom, and I got dressed and headed to the hospital.  By the time we got there, he was being admitted to the hospital.  Sandy stayed a few minutes longer, then had to leave to do her bus route. She could not find a substitute for the afternoon route.

We stayed until Kristie and the boys arrived. Pop was comfortable in his room. Since he had fallen several times, the nursing staff but an alarm on the bed. Pop could not get up without someone hearing an alarm. This made us feel safe to leave him alone for the night. They said he would be discharged the next day. Between Libor and us, someone could pick him up and settled at home before Kristie was home from work.

Pop has a implanted defibrillator. It went off on the 29th of April. He had a heart attack and that defibrillator saved his life. The cardiologist added a new drug that Pop feeling nervous and not good at all. He could not sleep for anything. He gradually felt worse every day on the new drug. We called the doctor’s office for assistance. They did not believe it was the new medicine and stated they would take a good look at him in the office st his appointment. He was scheduled to be in there in 2 days. He was due to see the cardiologist tomorrow. I guess he could not wait.

God leads and guides our daily activities. God must be telling Pop  it is not his time yet. He’s got to hang out with us a while longer. He ready to help us get his affairs in order. Barry and I will be going up to help him set things up this weekend. We’ll have to work things out for healthcare POA’s and type his will up for him. Sandy will have to sign everything when she gets home. She and mom are attending my Nephew, Daniel’s college graduation this weekend. Mom is really looking forward to it. I hope they have a great time.

Life will eventually slow down. My second surgery has been scheduled for May 28th. Looks like my summer will Will be spent healing. YoU’ll still have decisions to make after the surgery. Radiation and chemotherapy are still a big unknown in my life.

Saw my neurologist this morning. He wants me to have a few health issues checked out and deal with the chemotherapy before he changes anything. So I feel kinda lost or on hold until a few issues are settled.I’m digging deep to pull my patience out and focusing on my health and diet while at home.trying recipes that are results to chew and swallow. My body is getting to the point that it has a little trouble doing those things lately.God is guiding me with this issue. I pray and ask for guidance and patience daily. I have figured out it is not my place to ask God why I am in this shape any longer. It is in his plan and I am in his hands. Not going to Strasbourg anything…..at least I’m going to give it my best shot at trying not to stress. God will guide me!

Post Lumpectomy: Day 9 pathology report from Dr. S

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When you go to a doctor’s visit for a pathology report, life can get a little scary. They tell you they caught it early and it will be easy to handle once out.

I’m not worried about the results, my life is in the hands of Our Glorious Heavenly Father. I’m ready for whatever he has planned for me.

I’m getting a bit frustrated with things going wrong with me. I’m especially frustrated with the constant need doctors have to cut holes in my body. It will not take long for my body to look like a road map of scars. I need to make an appointment with a dermatologist next. I have a few places that need to be checked out.

Cowdens Syndrome is manageable, but you have to stay on top of your screenings. Miss one could mean a major life change or your life. At the moment, my head is spinning and I can not turn it off.

There are so many health issues going on with me at the moment, it is hard to judge what to handle first. The priority at the moment, is the breast cancer. My knee would have to be next and the growth on my tongue is third. Within the breast cancer treatment, I have been getting treatment to the left knee. I have an appointment next week concerning my tongue. We’ll see.

Received the pathology report today from surgery. My lymph nodes are clear, but the cancer had spread in the tissue around the tumor. I have to have another operation to let the doctor remove more tissue.

Unfortunately, the process I’ve just been through is about to repeat and could repeat numerous times until she is happy with the amount of tissue she has removed. I’m not happy with the thought of more surgery, but I do not want this mess growing in my body.

Well supper is ready and I’m off to serve it up. Have a great evening…….

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

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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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