Update: Jill

Jill is doing well. Surgery started late and took longer than anticipated. Now we wait 7-10 days for pathology report. We finally got her home. I got her settled in her chair, all doped up and sleeping. Now  I.m gonna figure dinner out and sit myself down soon! Thank you all for your prayers and support. Jill truly enjoys blogging and enjoys all of you!

Thank you,

Barry Baynes


Daily Prompt: Unleash Your Inner Dickinson

National Poetry Writing Month is nearly at end. To celebrate it, try your hand at some verse.

The Fight in Me

Facing the illness,

Building my strength,

Dealing with pain,

Day by day,

Doctors so confident,

With so few answers,

But their abilities are lacking!

As I enter an exam room,

Their knowledge is useless,

My body out of control, 

As strange things continue, 

One doctor’s academic experiment,

Lab-rat I am not,

Without knowledge of applicable treatment,

We play the game “What to try Next?”,

Not knowing the outcome,

But something has to be done,

The pain remains unending,

But my spirit wains,

Unsure of the outcome,

But a new willingness to try,

Something has to treat this disease,

I will not let it get the best of me,

I am a different person,

Than earlier days,

My faith in the Lord,

Keeps me going,

For in his hands my body lies,

The world around me appears different,

 This disease has changed my insight,

And perspective of my surroundings,

Thank you, Lord

For showing me the way,

To manage this illness,

In a positive way!

Daily Prompt: Cringe-Worthy

Do you feel uncomfortable when you see someone ;else being embarrassed? What’s most likely to make you squirm?

What makes me uncomfortable is seeing anyone think they have the right to attack someone, in public, for whatever reason.

I wouldn’t call the feeling I get, uncomfortable. It leans more toward anger than uncomfortable. As Americans we have rights. In my book, one right should most definitely be; the right not to be attacked in public unjustly.

I feel more uncomfortable for the person doing the attacking. Not only is what they are doing embarrassing, it is just not nice. The reason/cause of the attack doesn’t matter. It, flat-out, is not right!

Coming down off my ‘Nice’ high horse, I’ll admit there is something in public that makes me cringe and want to point something out to another person. I never do it, but I feel terrible for even thinking about it.

I’m embarrassed to start with, that today’s society has a named things like “muffin tops“, “whale tales”, “tramp stamps”, and “bro-pants”. It is just sad that our society thinks it is OK to dress the way they do out in public. Since when is it OK to wear your pj’s to the grocery store?

As a woman, when I see another woman or girl out in public dressed as if they should be wearing “Spanx” from head to toe makes me cringe.

I am uncomfortable being shown the top of someone’s rear when in public. Call me old-fashioned, I do not care! Whatever happened to having a little mystery in your life? Do you have to show all you goodies off, every time you are out in public?

Next time you think you are ready to leave the house, take a second look. Think about the people who will be looking at you once you leave your home. Have a little mercy, please!


For the Week of April 28, 2013: Writing as a Spiritual Practice

Through the exchange of stories, we help heal each other’s spirits…Isn’t this what a spiritual life is about?

–Patrice Vecchione, Writing and the Spiritual Life

Writing for me is an outlet to show my true self. Writing allows me to be completely honest with the world and myself. I have become more verbal on topics I would normally hold in to eat me alive with stress.

Recently, I have felt a new strength developing through my writing. I feel my faith has strengthened and I am changing as a human being. I look at the world differently. As a child, I the beauty of the world amazes and astounds us. As adults we have forgotten what a beautiful place we have been blessed with by our precious Lord. It suggests the old saying. “Stop and Smell the Roses”


I look at my family, friends and life in general differently. My health has been a huge factor in the changes noted in me. I have been through so many lab tests, x-rays, CAT Scans and MRI’s that you could probably see me glowing in space or find me easily with a satellite. Dealing with my rare genetic disorder has brought patience and tolerance into my life (which are 2 things I was sorely lacking in). I’m a nurse. I once thought I was blessed with the patience of Job until receiving my first diagnosis and my roller coaster ride started. After brain surgery, I quickly learned to dislike the word, Time! I’ll re-post from my blog on ‘Time’.

           ******This is a re-blog. I felt it was appropriate to post it again, cuz that old       dislike is the word ‘Time’ is coming out again. I have something go wrong and I feel like crap-ola. All the doctor’s office can say is give it time, they will come in. I truly do not like being in this position. One thing has changed since I wrote this, I have been reminded that I am not supposed to worry about things. I need to put it in God’s hands, he is in control. So much has gone on since 2009, I had kinda forgotten that huge fact. I am actually beginning to feel more at ease about my illness. I do not like getting worse, but I have to remember, I’m just getting closer to him. Honestly, being able to give a little of this worry up is wonderful! I’m loving the peace!*****************************************

I learned to hate that word several years ago. When you are healing after anything to do with the brain, everyone’s favorite thing to say is ” Time, just give it time.”. I do not know about anyone else, but both Barry and I are a tad impatient. Time is a word impatient people can’t stand.

I have to admit that I enjoyed paying Barry back with a few time comments. You have to understand my husband’s quirky sense of humor. I know he thoroughly enjoyed telling me “Give it time.”. He smiled and giggled a little too much after saying it. I turned it around and now use it on him just a little. I tried to hide my snickering.

OK, well down to the news I need to share. My visit to neuro-oncologist was quite informative. He gave us more information than we have ever received from other doctors. He confirmed that I do have Cowden Syndrome. With my medical history, he doesn’t feel the blood test is necessary. He is scheduling an MRI of the brain and a full body PET Scan. He says he hopes they are both negative, but to be ready for the possibility. Said it could be as simple as the thyroid cancer not being totally removed or something else manifesting in the neurological symptoms that have been popping up. Here we go again with that word, TIME! Barry and I are praying and giving it to God. If it’s meant to be……….

I have always been a very compassionate person, to the point of being a sucker. Barry’s stroke strengthened my faith and spirituality. When he was healthy enough, we found a church to call home. We are enjoying getting to know the church community and trying to find which ministry we would like to be part of.

My health would be my precipitating event. Since 2000, I have had 3 spinal epidurals; been through a year with a masseuse; a year with a pain management doctor; been through thyroid cancer three times; my tonsils grew back and removed a second time; had brain surgery for a benign cerebellar tumor; been diagnosed with a rare genetic disease that causes tumors to form through my body; lost my gall bladder. had a ruptured cyst in my left breast and am now facing breast cancer. Surgery scheduled for Tuesday.

I have definitely felt the need to get closer to God and learn more about my religion. I study the bible regularly. I have learned more about the Bible in the last year than I ever did attending church as a child. Barry and I read together every evening. We are trying to get through the bible before summertime.

My re-found spirituality has helped me to notice and appreciate the world around me again. My relationships with my family have improved. I love my husband more everyday! I thank the good Lord daily for bringing him into my life.

Barry and I are now taking care of my mother. She wasn’t in a healthy home-life with her husband. When her health started to decline, she moved in with us. It was a bit of a struggle to start, but we are getting used to each other. I have written about the transition we went through when she moved in. It has been healthy for Barry and I to work on the posts together.

In closing, in my opinion writing has changed my life. I look forward to it daily and enjoy planning my post each week.

For this week:  How has writing deepened your spirituality?  Your compassion or insight?  How have faith and spirituality manifested themselves in your life?  Was there a precipitating event?  Write about the prayer that writing becomes, the spiritual journey that writing has helped you discover.

Nervous Nellie……

Here I sit at 5am, wide awake. Unable to turn my head off long enough to get some rest. I started off sleeping, but Maggie‘s allergies started acting update, causing her to wake us up. At least wake me up.

Barry is down for the count. I couldn’t get him to turn over he’s so deep in sleep. He’s wearing himself out to make sure I’m ready for next week. He wants me well rested to handle the stress that will hit on Tuesday.

I’m ready for whatever comes. It is in God’s hands. I’m not worried. Barry and I have made plans, for when they are needed. I’ve called all my family or emailed them. Everyone is being incredibly supportive. Mom is handling things better. She has stopped crying every time she sees me.

I have faith in my doctor and going to the best hospital around. I walked out of that building after brain surgery, I’ll do it again on Tuesday. When I leave, I will be cancer free. That will be the best part of my day!I’m going to make some coffee, almost time to get ready for church.

We are supposed to get up to 2 inches of rain today. The yard will go nuts! Flowers are coming out beautifully, so far. Rain will get things going……..Have a gorgeous day!

Daily Prompt: Your Time to Shine

Early bird, or night owl: Definitely Early Bird depending on you definition of early. Below you will find pictures of a few early bird-feeder raiders. 

Before brain surgery, I was definitely a night owl. After the surgery, I threw my alarm clock away. I had an internal clock that would have up and raring to go by 7am everyday.

My body is physically out of the bed, but once up I have a two-hour exercise routine to wake my voice and body up to be able to work properly. If I do not exercise, my body and eyes are crazy all day. I enjoy proper function, do I endure the daily grind.

After 2-3pm, my body heads in the other direction and it is nap-time. My voice starts slowing down and I have to do my eye exercises hourly to keep them focused. My legs hold up a bit longer, but it is usually best if I am to the point of my day that I can start winding down around 8pm.

I love to get out and drive on my own. Shopping used to be my stress release, even window shopping. It feels great to be able to make it out on my own at times. I drive better than I walk.

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.