We are back, at least for the moment!

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……

The Infusion Center

Saturday afternoon, Barry and I were at the Infusion Center to receive my Nulastin injection to boost my white blood cells. As I sat quietly waiting, I looked around and listened to the conversations around me.

The gentleman sitting to my right was on his second round of chemotherapy for bladder cancer; the lady to the right said hello and dozed back off quickly.

There was a young man in his twenties sitting across, the nurses’ s were hanging blood for. His bloodwork needs boosting to continue his treatments next week.

The gentleman in the chair next to him, had his wife with him. She she speaking to the lady two chairs down from me. The lady down from me, was stating that she was giving up. Her husband could no longer sit with her, he was tearful and upset. He left the room and twenty minutes, a young lady showed up to sit with her mother.

After listening a while longer, she revealed that she was going through her sixth round of chemotherapy for the last time. Years ago, it had started in her breast and just spread around her body, until she now had brain cancer and nothing was helping.

She said she cannot do it anymore and is ready for her seat in heaven. Her daugher started to cry. I started tearing up, Barry pulled the curtain to allow what little privacy that is avaiable.

As I listened, to the hustle and bustle around me, I was hit with the sheer magnitude of the number of people that float though those rooms. The waiting room is always full, and when called back for my turn, I’m taken to the only empty seat in a bay.

It is truly sad to see all of these wonderful peeple going through the agony of chemotherapy. But this is still a statement for how far medical technology has come. All those people in there numerous times surviving, although having to come back for more.

I’ll continue this post after I look up some numbers. They have to be up there. I never thought about it before this date.


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!

Daily Prompt: In Good Faith: A brother’s wish

Describe a memory or encounter in which you considered your faith, religion, spirituality — or lack of — for the first time.

Photographers, artists, poets: show us FAITH.

During a shift at my first job, I admitted a man to my unit that was in bad shape.  I discovered his admission was at the request of his Hospice,  for pain management. Being a new graduate nurse, you get crazy assignments and tough cases as learning experiences.

I completed the proper paperwork, gave the patient medications his doctor ordered, did what I could to help the family and make them comfortable. I gave the report to my charge nurse and then; started rounds on my other assigned patients.

The supervisor met me in the hallway to tell me of a status change for my new patient. When I returned to his room, I met a representative from his Hospice and he introduced me to the family gathered to say good-bye. My new patient’s diagnosis was End Stage Pancreatic Cancer and his last wishes were to be admitted to Room 434 at the Regional Hospital, where his wife passed away. She died, in 1984, in the same room where he laid dying now.

The Hospice nurse explained his wishes a little better. When his time was close, he requested to be admitted to the hospital for pain management. For about two hours, I played private-duty nurse to his family for whatever need may arise. I tenderly cared for their family member and provided pain management, as ordered, to keep him as comfortable as my capable hands could.

It did not take long for the signs that God was calling him home to show up. His respiration’s were becoming shallow and his heart rate slowing. When the end was upon us, our patient’s brother stepped forward and stated. ” I’d give anything, to see him sit up in bed and take one more breath.”

As in slow motion, my patient slowly, sat up in bed and drew in a long exacerbated breath, fell back on his pillow and was gone. Everyone just looked around the room in amazement. The Good Lord swept in and took him off to be with his wife.

As I watched the family leaving and listened to their stories of this man’s life, I imagined he and his wife walking, hand-in hand, down a beautiful street in heaven.

My faith has always been strong. When it falters just a little, I think back to the 39 years of patients I have cared for and the many unexplained things I have seen. I have no doubt in my mind, there is a God and he is with us always! This story is about my first spiritual encounter. I will never forget the feeling in that room. I left the room full of faith and longing. I get goosebumps, just thinking of that night.

Should we take a vacation or rest and heal?

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)


Just Write: Loss

Loss comes in many forms, when you least expect it.
It can mean anything from a loved one to body process, like speech. Loss hurts.

My brain tumor has left my voice weak and I have a lot of trouble speaking. When I have something to say, I feel like I am pushing words out and I can be loud.  I cannot help it. I truly cannot help it, nothing hurts more than having people talk over you.

One thing I have learned since becoming disabled, is people are rude. No one has respect for anyone. What has happened to civility?

People do not listen if you have a speech impediment. They automatically discount you as a person, the minute they realize you have a problem. They take what they think you are saying and go with that, even when they have it totally wrong.

It hurts worse when it is those close to you. The pain is worse when someone you love cuts you off mid-sentence without attempting to hear what you have to say. I actually fired someone for insubordinance when they made fun of my voice. It was at a time when Intruly needed the help, but I wasn’t putting up with that type of behavior.

I feel childish complaining. Barry had a stroke in 2011 and mom is in the beginning stages of dementia. In a house full of brain injuries and so many losses, do I have the right to be upset? When I need help with a phone call, should I be given flack or help with a call?

I am becoming used to being disabled, but this part is getting worse and I am struggling with how to handle my home situation!

We live a quiet life at home, not a lot of noise. Noise bothers all of us.

I’m 47 yesrs olf living like a 80 year old. Maybe it will help down the road.

Jill and Barry Baynes


Daily Prompt: Too Big To Fail

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-linetour. 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)


Post Lumpectomy Unexpected Infection

Wednesday morning, I woke up feeling fine. I had a banana and sat down with a cup of hot decaf to walk my voice up. Barry was going to the hospital for blood work and bringing breakfast home with him. I crawled up in my favorite chair and got comfy under a blanket. While waiting for Bear to get home, I started to feel horrible. I got up, went back to bed and crawled under all the covers. 

Bear got home and pulled the thermometer out. Other than feeling like a truck had run me over, I felt good. My temperature was headed over 100° at that time. I was a bit dizzy and nauseated, but just extremely cold. I stayed folded up in the covers and rested. My temperature slowly climbed to 102°.

Barry called the breast surgeon‘s office and spoke with the nurse practitioner. She suggested I be seen by a doctor. My family doctor was closer than the breast center, so we called Dr. R.. She saw me at 3:30pm. After a bit of a work-up, she decided it was the incision under my arm. She sent me on my way with orders to rest, take my antibiotics, drink lots of fluids and see breast surgeon as soon as possible.

My private nurse, Barry, is watching me like a hawk. We saw the breast surgeon today. They agreed with my PCP on the diagnosis. They took a good look at the incision; pulled a loose suture out and the pain under my arm went immediately away. I was instructed to use the arm as much as possible, to avoid further fluid build-up. Of course, I was told not to over-do it. More drinking was encouraged and I’m to get the fever gone before my next surgery on the 28th. They want to get my margins clean and me free of breast cancer. I’m ready to be still for a bit. My running legs are getting tired. My chauffeur is starting to show a little wear. I can’t drive at the moment. My poor Bear catching all the driving duties.

Post Lumpectomy: Day 9 pathology report from Dr. S

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…….

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

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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