Category Archives: Life as we know it

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

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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

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Daily Prompt: Wall to Wall

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What do you display on the walls of your home — photos, posters, artwork, nothing? How do you choose what to display? What mood are you trying to create?

We love antiques, flowers, pictures and signs. Each wall is different. We have tried to give each room its own personality, but coordinate wall color and house style; where our budget will allow. We want our home to feel lived in. Every room in the house is well used and comfortable.

Putting a name to what we tried to create, would be comical comfort. Our signs make you giggle, the atmosphere and furniture make it comfortable.

Our pooch,Maggie, agrees with the comfortable part. She sleeps wherever she sits down.wait…..she is a dog, they are good at that.

Of course there is my step-father James, he falls asleep the minute he sits down when getting to our house.

Check the pictures out tomorrow. Had plans to take new pictures today, but my body wouldn’t cooperate this afternoon. Run a few errands, I have to sleep. I’ll update post in the morning. Show off my miss-matched wall decor. We may not be for a Southern Living Magazine write-up, but we like it!

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Daily Prompt: Second Time Around

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Tell us about a book you can read again and again without getting bored — what is it that speaks to you?

I would love to say the Bible (by many strong people many years ago, Jesus), but the good Lord knows better and I would like to keep my reputation of being an honest woman. I can always do better with Bible Study. The Bible is a wonderful book, full of magnificent stories of long ago. Every time you pick it up to read, you learn something different. It is the perfect response to this daily prompt.

Other than the Bible, I am a huge Nicholas Sparks fan. At any time of day or night, I could pick any of his books and read for hours. If I have to mention a favorite, it would be “The Notebook” (by Nicholas Sparks). “Dear John“(by Nicholas Sparks) really hits home with the world today. Every time I pick one up, I find something different. Boredom never enters my mind.

I usually wind up thinking of my lack of sleep after a good book. Once I pick anything readable up, it is hard to put it down.

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Daily Prompt:

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If you could clone yourself, how would you split up your responsibilities?

Cloning is an interesting topic. The medical profession has come so far in the past 20 years, I wouldn’t be surprised if cloning were not around the corner.

I thought and thought about this prompt, but couldn’t come up with a thing to write. Now, as I go to sleep, it hits me. I hope you enjoy.

If it were possible to clone myself, who would I assign my daily responsibilities? Well, after getting my mother’s medication ready and calling my sisters; I’d pack bags for Barry and myself, get Maggie‘s dog food bag, medication and leash, and we would disappear.

I wouldn’t look back or think twice, but we would disappear to a deserted island and live our lives out. Of course, Barry would have his camera, I’d have my sketch pad and Maggie would have her flashlight. We would be set.

We have been through so much in the past few years, we need a break. It may be a good idea to clone our family to take our place, so no one comes looking for us.

Mom would water the plants. Oops, I would have to see my sweet daddy one last time.Just for spite, if my step-son were around, I’d give him a tooth-brush and assign him bathroom duty.

Running away would be better than having a clone!

 

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.

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Continuation of the week of April 21, 2013, The Healing Power of Forgiveness

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A friend pointed out to me, that I may need to forgive myself to truly feel free and get rid of the feeling in my stomach.

If I can say anything about myself, I can truly say I am my own worst critic. Most of us are, but I am extremely hard on myself, always have been.

My third grade teacher wrote “Jill needs to learn that it is OK to be wrong and make mistakes” on the back of one of my report cards.

That was many years ago and you would think I had changed a little. Apparently not! I may have lightened up a little on myself, but not enough.

Working on apologizing to everyone I feel had to deal with my mess, I think I’ll add myself to the list. Surely I can figure out how to forgive and apologize to myself.

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For the week of April 21, 2013: The Healing Power of Forgiveness

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The Healing Power of Forgiveness

The morning of April 18, 2013, I received a call from my physician specializing in breast health. She called to let me know my biopsy results did show cancer. Some called Invasive Ductal Carcinoma.

She informed my husband we need to schedule an appointment to discuss options and she asked if we had thought of what to do if this matter came up.

Barry and I had not expected this matter to seem so quickly, so our answer was of course, No! Maybe we were a little naïve, but we were trying to work on the “positive thinking” option I guess we need to work on that a bit more.

I have always been vigilant with scheduling my physical and mammograms.In 2009, the brain tumor appeared and threw us for a loop.

After the brain tumor the weird symptoms appeared and I was diagnosed with; Cowden’s Syndrome, Lhermitte Duclos Disease, Thyroid Cancer, my gallbladder was removed, my tonsils were removed a second time, my mammograms started showing suspicious areas that needed to be rechecked and then biopsied.

During all of this hoopla, I felt the incredible urge to seek forgiveness from my God, my family and friends. When the possibility of death smacks you in the face, it makes you take a step back and look at our life. I felt silly apologizing to some of my friends, but the Lord and my is a different story.

My husband Barry was the toughest, but I could tell he was confused. But we talked it out. One of my desires, was to find and get involved in a good church. I wanted Barry and I to go together. I missed attending church.

We have since found as wonderful church and have become active members. Mom is going with us. It is a pleasure to see her enjoying herself and flourishing in the church community. She is about to be baptized.

I continue to ask God for forgiveness daily and to grant me the Grace, Strength and Mercy to help me settle the uneasiness that remains in the pit of my stomach today; I believe I know what I need to do to settle my stomach, but I am scared.

In the next month, I think I’d like to apologize to my ex-husband. He feels like my missing link. The problem I need to solve.

My family is extremely supportive and I love them each and everyone. They seem to have accepted my apology without fail. I hope this brings the closeness we once had back into our lives.

I didn’t leave my first marriage as I should have. I left my sister, Sandy and her family in town to deal with my mess. I was a mess at that time and truly did not know how to handle the situation. To put it plain and simple, I was young, stupid and scared. I got a new career and threw myself into work.

Seeking forgiveness from everyone involved, has started to ease my mind. I still need to follow through with talking to my ex-husband. We will see if it helps.

DAIlY PROMPT FROM

http://writingthroughcancer.com

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Personal Prayer Request

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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!

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Daily Prompt: History of Language

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Write a piece of fiction describing the incident that gave rise to the phrase, “third time’s the charm.”

Barry and I sat attempting to put a table together, we had purchased. The directions appeared to be useless and there were a million parts to organize into one table. We were starting to have regrets.

He got a bit angry with me for making a suggestion, so I got up and left it for him. Before leaving, I handed him the directions and strongly suggested that he read them, from cover to cover.

After a while, Barry called me back to help. I  went willingly. He may be grumpy teddy bear when being told how to do something, but he really just wants a little help and doesn’t know how to ask for it.

I like to think God was working on his heart when he got grumpy and then called me back for help.

The first thing I did was ask if he had read the directions, yet! When he giggled and took the book from me, was God whispering in his ear to listen to his wife?

We worked together for an hour and the table turned out perfect.

Is this where the saying, “third time’s the charm” came from?

First, we tried together.

Second, he got angry and I ran off.

Third, he asked for my help, read the directions and the table is perfect.

God works in mysterious ways! Was He telling Barry to ask his wife for help?

Daily Prompt: Turn, Turn, Turn

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For many of us, winter is blooming into spring, or fall hardening into winter. Which season do you most look forward to?

My favorite time of year, is when the air outside is cool and crisp. It is warm enough during the day, to enjoy the outdoors; but the nights are crisp enough to keep you snuggled under the covers, with that someone special making the moment worthwhile.

I love watching the flowers and the yard slowly wake to the spring sunshine. The leaves and buds slowly emerging from God’s green earth; as the birds start to buzz around like a swarm of bees. Each with a different song to sing.

I love getting the yard ready for whatever the season brings. Filling the bird feeders, putting out fresh mulch to protect the new flowers as they burst into our world with abundance of color.

Picking up the million little sticks and other things the wind has dropped into our yard. Bringing the porch furniture out, cleaning and touching up then paint as needed. Cleaning the wind chimes and hanging them in their proper places. Along with the bird singing, I love the mix the wind chimes joining in. It makes being outdoors so enjoyable.

Washing the porches down and organizing the potted plants and other decor to make our porches pretty enough for pictures and ready for serious relaxing. Then we have the grill porch. Need to get the grill cleaned and ready for the season. We love to entertain.

While I do all the above, Barry is handling lawn mower repair and weed eating. I’ll hire my sweet nephews to weed one of my flower beds.

We’ll need to get the fountain going. I’d like to find a small bench and plant another butterfly bush in that bed. The shrubs need a little pruning and I am hoping we can put a cement walk on the front this year. Barry will need to add hand rails to the steps if we get the walkway done.

If you cannot tell by my page of rambling, Spring is at the top of my list for seasons. Other than the allergy end of things, I adore the Springtime weather.

Dear Lord, I appreciate your gift of Spring. You did a great job! Thank you, thank you, thank you!