Tag Archives: Lhermitte-Duclos Disease

We are back, at least for the moment!

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In our earlier post, we stated we’d try to get a post in a week. Maybe more. According to how our day goes! Between radiation treatments, Barry’s doctors appointments and our energy levels; we are lucky to get anything posted. Have patience. I have taken pictures and written posts while sitting around the hospital. A lot of interesting things go on in local hospitals! Just wait……

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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Photo display leading to my wonderful news

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Received wonderful news, Margins are clear….now off to Radiation Oncologist to discuss treatment! Thanks for the prayers and support!

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!

Things I thought I would never able to say, ‘Yes, I did that’ , in my life time

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If you think you are about to read this ‘naughty girl’ confession list, prepare to be disappointed. I’m afraid to admit I’m one of the tamest women left on earth. I should have titled this post, ‘The things I should be embarrassed by or ashamed to admit I did’, rather than the title I posted. Well here goes, sorry to disappoint you……

1. I called out sick at work, when I just did not want to go.

2. I am currently wearing a kotex pad under my left arm, to cover one surgical incision from my breast cancer surgery.

I sprang a leak. I felt like I needed a plumber. The doctor’s answer was to cover it with a kotex pad to handle the drainage until my next appointment.

3. When I walk briskly, I sound like a bottle of water being shaken up.

4. When driving a drunk friend home, once upon a time, he attempted to grab the wheel and struck me across the face. I pulled over to the side of I-85 and put them out of my car.

5. I have had to send money to a friend stuck in Biloxi, Miss. without a dime to get home.

6. I once let someone get mad at me because I did not like hanging around with them. They got mad and quit coming around. I felt so bad, but I didn’t have the nerve to tell them to go away.

7. I let myself get into a situation at a party once, that a woman thought I was interested in her. Embarrassing….

8. When I went to pick a blind date up once, they attacked, I fought them off and ran. As I ran he tore the shirt and bra off my body. I was running through a parking lot half-naked.

9. In my single days, I let a woman tell an overly tipsy man I was hers, to get him to leave me alone.

10. Left a restaurant/bar with a couple of friends one night. When we got to the parking lot, one of the women I was with, started taking off her clothes as we walked to the car. To date, I haven’t asked “why?”.

11. I watched a girlfriend walk over to a man, whom had hit on her, pull a can of ‘Campbells’  soup out of the bust of her dress and hand it to him. She asked him to leave her alone and told him that he had the only thing he’d ever get from her in his hand.

12. My ex-husband talked me into ‘making-out’ in a casket at a funeral home in a small town in Georgia.

13. I corrupted my new husband in the dark on a boat on Lake Lanier, many years ago. That is all I’ll say about that.

14. I have attended the Masquerade Club in Atlanta, Ga. Not proud of being talked into going.

15. I used to love karaoke.

All of the above statements are true, 90% of them happened within 6 months of my divorce. I decided after that time, that I had put myself and my body through enough craziness. I let the true, sane me come back out to be the decent person I am.

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

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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”

http://en.wikipedia.org/wiki/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.

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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Please Forgive My Absence

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Please forgive my absence for the past few days. Imagine the nerve of life getting in the way. I’ll admit I let the “poor pitiful me’s” get in the way. When my favorite urologist found my new problem, my mood kinda hit the toilet with a big splash. I’ve had 2 days of sulking and I’m tired of being the only “stick in the mud” at the party.

Time for a reality check. Yes, I am sick. Yes, I hurt all day everyday. Yes, I have to see a lot of doctors. But………I love the Lord, I adore my husband, I have a loving, happy, sometimes screwed family, I have 2 great pets (a dog that thinks she is human and a fish that will come to the top of the bowl when called), I have a great life.

Why I let myself get all down and depressed, I’ll never understand. One doctor I see told me to quit worrying about getting upset. He said it’s not like I don’t have a million things to worry about.

Maybe all this studying and work I’ve done, on turning my issues over to the Lord, is working. It was much easier to turn this over to God, than in the past. I really think that listening and learning in church is the way to go. Growing up, I was more concerned with who was at church, than what I was learning. I’m learning a lot at Victory Baptist Church, they are such a truly incredible group of people.

Tomorrow is the MRI of my abdomen and pelvis. I’m praying that whatever Dr. M saw on my liver is no longer there. Please think of me tomorrow, Barry and I can use all the prayers we can get.