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”

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.

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

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

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

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!

Cowden Syndrome rearing it’s ugly head

Barry is the most patient human being on earth. Either, God is giving him strength or he is hiding his fear really well. We are currently waiting to see a doctor for results of an abdominal/pelvic MRI.

During my renal ultrasound, they discovered something on my liver. The doctor’s answer was it is just an incidental finding, we’ll get an MRI to check it out. He thought he was easing my anxiety.Nope….just made it worse….why don’t they get that?

If they were honest enough to just say it could be this or this…..why not do more test to rule it out…..would have made me feel better……but since when is the patient supposed to feel good after seeing a doctor?

Other than that, even though the breast biopsy was negative. They are still investigating the cause of the problem. Another MRI this weekend and appointments all next week to get results and such.

My body is acting crazy and I can’t get a return call from a doctor to save my life. I am also experiencing a new symptom of cowden syndrome, that no one wants to help me with. These doctors wonder why people get depressed. I have a rare genetic disorder that actually scares the doctors treating me.

Barry is being a supportive dream. I am a fussy mess, he just tells me to relax and go sit down. I love that man.

I’m doing the paperwork to join the study at the Cleveland Clinic. Not sure it will do me a bit of good, but maybe it will help someone else dealing with this mess.

I need to go for now, have a few contacts to make. I think I have diverticulitis again. I have to call my doctor. I need to do paperwork for myself and mom. Have a great day everyone.

Barry and I didn’t know how to act yesterday. We saw a movie and had lunch out without dealing with a doctor’s office.

 

Yearly MRI √

With Cowden’s Syndrome, you have to follow a set schedule to keep up with which screening is next. Then, of course, if there is a problem, the screening and recheck can run together. 

Today, I went for my yearly MRI, about the brain tumor on Monday at 1pm. This is where screenings can run together.

I had a breast issue last year that caused them to redo my mammogram, which has led to other mammograms, ultrasounds and now, 6 months later, a biopsy. Scheduled Monday, one hour before my neurosurgeon appointment. At least they are within walking distance of each other.

The sad thing is, my next yearly mammogram is due in April. But I guess my mammograms are about to put a kink in my set schedule. In my schedule thus far, gynecologist, endocrinologist, neurosurgeon, neurologist, neuro-oncologist, gastroenterologist, dentist, urologist, dermatologist, psychiatrist, counselor, genetics counselor, general practitioner, breast specialist, otolaryngologist, cardiologist, massage therapist, and acupuncturist. 

Now, that I have boogered my knee up, I have to add an orthopedic doctor in there. I am sure surgery is in the future for that, which will add physical therapy into the mix.If surgery is in the mix for the next few months, I need to see about getting the lump taken out of my right wrist while they are at it.

The fancy MRI on my left knee next Thursday, then see the doctor Friday. The endocrinologist is in the mix next week somewhere. I’m getting tired thinking about next week. 

Barry is my riding buddy. I’d be lost without him. I can’t drive long distances, so he gets me to the long distance rides. I’m tired of being organized. I never considered myself organized, but with all of this, you have to be. All of the above is just me, included in my mix are Barry’s appointments, as well as several I take mom to. I’m not making light of their appointments, mine takes up more calendar space than their’s does. We should hire a good personal assistant……