We go tomorrow to get lab results from the second surgery. I’m praying there will be clean margins, if not she csn tell me she can do the mastectomy and chemo/radiation will handle the rest.
Haven’t slept well lately, I’m off to bed to see if I can get some rest. I’ll post news ehen I have it. No news is good newd in my book. Sweet dreams all!
Jill and Barry Baynes
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
The three of us went for a few groceries this afternoon. Mom needed some milk snd had forgotten to pick it up, so we stopped at our friendly corner Kroger store.
We sat in the car while mom ran in. I pulled the car forward a little to look at a vine they had for sale. Looked like Mini-Black-Eyed Susans. Very cool looking vine and I want one!!!
While checking thenvine out, we didn’t see mom come out of the store and get into another car. She had been sitting there for maybe 10 minutes when the owner of the car appeared. They were curious ad to whom was in their car and started demanding answers loud enough that it got my attention.
Barry hurried out of the car to mom’s rescue as a police car pulled up. Twenty-five minutes later and avstetn lecture from Officer Goodguy, we headed home. Poor mom was shaking like a leaf.
The Officer meant well, but he didn’t tell us anything we were not stressing over already. The car she had gotten in could have taken off with her; she could have walked off, or dhe could have been hurt. Every horrible thing posdible wad running through my mind. Thank the good Lord she was ok.
Jill and Barry Baynes
Ever heard that if you stick a snapping turtle to a person, they will not let go until they hear thunder rumble? Well, let me tell you about a fishing trip when I was 2 years old. My sister Sandy was 4 years old when this occurred.
Pop caught a turtle and let Sandy play with it. For years, Dad had told us all these crazy stories about animals. One of those stories listed above. Mom and dad were not paying attention.Little Miss Sandy decided to try this tale out. When I turned around, quickly, Sandy stuck the turtle to my stomach, right at the top of my ribs.
That turtle latched on, Sandy screamed let it go and ran. I immediately started to bleed and I added to the screaming. Mom put her pole down and came to check on us. A storm was blowing up. At the moment mom reached me, there was a rumble of thunder and that crazy turtle let go and fell to the ground. Mom picked it up and threw it in the water. She yelled at Dad it was time to go. We packed up and headed home. I still have a scar today.
As you can tell, we had a little more freedom as children when we were younger!
Another story took place in our backyard. We had a little plastic pool in the backyard to splash around and cool off. Sandy decided she wanted to teach me how to swim. Mom said that was fine. Sandy and I filled the pool up and got in our swimsuits. Sandy’s idea of teaching me to swim was me on my stomach lying on the bottom of the pool with her sitting on my back. I’m just thankful mom checked on us before I drowned. Needless to say we were not allowed in the pool alone anymore. I still thought my big sister was the coolest thing on earth.
When I think of hope, the saying, “Hope springs eternal” is the first thing that comes to mind. The sad thing about this phrase is it sounds cheerful and sweet, when it means things are hopeless! What a nice way to say something is hopeless. (from Alexander Pope’s poem, “Essay on Man” from 1734)
-Hope springs eternal in the human breast;
Man never is, but always to be blessed:
The soul, uneasy and confined from home,
Rests and expatiates in a life to come.
– Alexander Pope, An Essay on Man
Origin of Hope Springs Eternal From: http://en.wikipedia.org/wiki/Hope_Springs_Eternal
Definition of Hope From:http://en.wikipedia.org/wiki/Hope
How do I write about hope? My best example is my great-niece and nephew’s birthday party. My great-niece is older, so she understood presents a little better than her brother. I love kids, especially my sister’s kids and their grandchildren. Since I was unable to conceive a child, I spoiled my sister’s children with the loudest, most annoying toys I could find. I was younger and in better health with my older sister’s kids, so I was able to spoil her children more than my younger sister. But I’m having fun with them now, they are older and understand my illness better.
Julie-bug is my oldest sister’s daughter. I have recently discovered that she doesn’t care if we give her kiddo’s noisy toys, Soooooooo…….watch-out Bugs, you may not know what your quiet Uncle Barry is capable of. He is a prankster in disguise. My oldest sister’s brother’s do not have children yet, so their time will come. We cannot wait!
The party we went to was precious. My niece has turned into Super Mom! She is so creative and always has been. Home-made everything from decorations to the cake. She is Wonder Woman. I am so proud. She has always made me feel like a special part of her life and I feel honored that she has let me be part of her life! She has accepted Barry as her uncle as if he had been around her entire life. It thrills Barry to be a part of her kids lives. Luke too, of course. Julie did a super job in that department also. Her hubby is a sweetheart and treats her like a gem!
OK, back to the party……our little nephew would open his gifts, play with the toy for a while and on to the next gift. When he got to the last of the gifts and the only thing left was paper. He searched every inch of the paper, numerous times, looking for another present. Until his sweet mommy picked the paper up, he was positive there was another gift lost in all that paper. When Julie took the paper away, he had a look of sheer disappointment on his sweet little face. Just adorable!
About 30 minutes later, he found the bag of gift wrap. By the time he was found, he was upside down in the trash can still looking through the paper. When he was pulled out of the can, all he said was “Birthday, please”. The can had to be removed from the room.
I love kids. I would have had a houseful if I could have, but Barry and I are enjoying being Aunt Gege and Uncle Bear! All six niece’s and nephews have called us that. I’m still called Gege by the 30 year olds. They are still adorable. We love you guys! I hope this is a good example of Hope. A little boy’s Hope that there were more presents. Adorable! I am a little prejudiced.
Thanks for everything you did!
Thank you for everything you do to aid those of us dealing with this daily! God Bless you all!
Jill and Barry Baynes
Reclaim the sacred in your life. Embrace quiet, the stillness. Meander along a trail, near the sea, the woods, a long walk along city streets. Take in the sights, sounds, smells, and movement. Write about what you see—one single observation. Describe it and let it take you wherever it takes you.
Sunday afternoon is my favorite time of the week. Mom knows Barry is watching Nascar, which means we get approximately 3 hours of total peace and quiet. No interruptions, just Barry, myself and Maggie May. Oops….I can’t forget Shotgun, the fish.
Don’t get me wrong, having mom here is turning into a blessing. I feel better knowing she is close, since Barry and I have handled illnesses like hers, in the past. Although she can be challenging to deal with at times, she is my mommy and has a way of keeping life interesting around the house.
On Sunday afternoon, Barry and I veg-out in our chairs in the living room. Maggie will make the rounds from me, to Barry and then to the couch, where she will usually stay snuggled up in her blanket. She is the sweetest looking thing all snuggled up and sleeping.
The funny thing with our little pup, is that she poots (little squeakers) and snores like a sailor when sleeping. If you are sitting near her when the squeakers start, Move fast!
As Barry and I watch the race, I can hear the bubbling fish tank in the background. Noise from the street is minimal, most days. The weekends appear to bring out Motorcycle alley, on the road behind us. I think a local riding group meets at the clubhouse nearby to start there weekend ride.
We live in a beautiful area to ride. I enjoy hearing the motors ride by every weekend. Maggie doesn’t understand and spends time watching them out the window. Just precious.
As the racecars on the television make their preverbial left turn for the Nascar fans; the hum of the engines slowly makes my nap draw closer. I spend my time during the race talking with Barry, making a list of things I need to do for the week, and I work on my nails. When my body is to the point, that the hum of the engines makes me want to curl up with a pillow and blanket, I do! I usually sleep like a baby, until Barry wakes me up to get ready for church.
My house is not perfectly clean. It looks lived in. In my opinion, your home should be clean and lived in. There are a few clothes I need to hang up on the rocker. The pup keeps the couch turned upsidedown. Barry is quietly rocking in his recliner, close to napping himself. Mom is very quiet in the back. I need to checkmon her.
Here I sit, typing my post. If I’m not too sleepy, I’ll get my word for the weekend posted. Otherwise, I’ll play catch up all week. My everyone have a wonderful Memorial Day! Shake a soldiers hand and say thank you. Hope everyonenis blessed with weather as gorgeous as ours. Be safe!
Sitting here, I try to think about what to do with this writing prompt and I am finding it hard to make my decision. There are so many things in my life that could be referenced as an anniversary; but then they should be considered important dates in my life, but I do not see the point of calling them anniversaries. It actually depresses me a little to place that much importance on such painful memories.
If I called any of my memorable pain filled days an anniversary, it would be the day I found out about my diagnosis of Cowden Syndrome and gangliocytoma, a brain tumor. This is the date that forever changed my life. A day I will never forget. The brilliant neurologist that was chosen to give me the news, was greatly in need of bedside manner training, instead of Shock and Awe Therapy. It has been my experience, that when the news is bad, the doctor has no tact at all or they tell you the least amount of info possible; the worst thing in the world to do is research on the internet. It will only manage to scare you silly. A bit of info goes absolutely nowhere.
I prefer to keep happy things for anniversaries. Maybe I should look at each yearly anniversary of my illness as a good thing. After all, I am still alive and kicking. But I owe that to the Good Lord above. My life is in his hands, he watches over Barry and I. Our faith keeps us going.
This leads me to what I really consider the important days in my life. The day I met my husband (10/31/1998); the date we started dating (12/15/2001); the first time he kissed me ( 01/02/2002); the date he proposed ( 11/13/2003) my 38th birthday; our wedding date (4/3/2004); and then my diagnosis date (2/25/09); saw my neurosurgeon (4/1/2009); and had brain surgery (4/6/2009) five days after my fifth wedding anniversary.
The other dates are just part of God‘s plan for my life. I know when they are because I have to give my medical history a million times in a week. I should know it by heart, but I do have days I cannot remember brushing my teeth in the morning. So I keep a nice, tidy list of medications and medical history on my tablet. Which is a permanent part of my purse. I call it my brain.
There was a time that I felt like someone or something was out to get me. Through the Grace of God, I have handled my latest illness without feeling like a nut job. I’ll explain a little further; since the year 2000, I have gone under general anesthesia 14 times. My tonsils have been removed 2 times (40+ years apart). When it was discovered I had Thyroid Cancer, it took 3 treatments and full body scans to clear it out of my body. (after my thyroid gland was removed); they were unable to fully remove the brain tumor and I am suffering from after effects of the tumor moving around in my head, pressing into cranial nerves. My vocal chords twitch constantly; I have difficulty swallowing; breathing is difficult at times; my left arm and leg are in constant pain; my balance was affected by the brain surgery, so I have trouble standing and walking. Trust me, you do not want to see me run!
This is not everything, but it is enough to show you that I am depending on my Faith for survival. It has always been my philosophy, that when you tell me I cannot do something it just makes me want to do it more. Helps me yo fight off those feelings of I cannot do this any longer.
If I need to have an anniversary, I think I would stick to April 6th, 2009. Other than my wedding day, that is the date that changed my life. My sweet husband has been by my side through it all. With our wedding anniversary being so close to “The New Me” anniversary, we celebrate through the month of April. Once the weather is warm enough, we plant a new flower in our “Victory Garden”. We spend the.month of April writing each other love notes and planning what to do on our days. Then we choose a plant to enhance our Garden. I’d share a picture if I had a new one. Nothing is blooming yet, thus far. I’ll snap a shot when it starts.
THANK YOU, BARRY BAYNES, for making all our anniversaries special! I Love You to the moon and back!
Mommy, it’s your Happy day!
I plan to take this a different way. Motherhood is a previous gift from God. Anyone lucky enough to be blessed with such a privilege, should cherish every moment they are given. Growing up, the only things I wanted to do was fall in love and have a houseful of children. My first husband and I tried for years. We both suffered through 5 miscarriages and a physician told that us if we wanted children, we needed different spouses. Fortunately, our inability to have children was not the reason our marriage failed.
With a pregnancy, you start making plans, look forward to the future and then you realize the pregnancy is failing. It breaks your heart. After the fifth miscarriage, your heart feels like a dried up lump of clay. There is no way to describe the agony your body goes through mentally and physically. A miscarriage is a horrible thing to live through. Accepting that it doesn’t seem to be in the Good Lord‘s plan for you to become a mother or father is intense, but as Christians our pregnancies are in the hands of the Lord. Our lives are part of God’s plan. He has a plan for us all. It is not our place to question that plan. Even though it is in the Lord’s Plan, you still go through a period of regret and doubting. It is not easy to hand everything over to the Lord without some grieving. You get past the emotions and find the strength to give it over to God and get on with your life. You do a lot of praying. Asking for Grace and Strength to get through the misery. You do get through it! I did it five times and lived. So did my ex-husband. He has remarried and has a son.
I , also, have remarried. I managed to find my place in this world. I met my soul mate in 2001. We were married three years later. I love him more everyday. I don’t know what I would do without him. He makes me want to be a better person. We have both done things that neither of us ever thought we would do. I made an attempt at being a step-mother ( I gave up when my step-son made it clear, he wanted nothing to do with me). Barry is learning to love my mother.
Her health was failing and she did not need to be living in the situation she was, so we packed her up and moved her in with us. The situation is actually working. I did not think it would. As mom ages, she is learning the art of compromise. It has tickled her pink, to have Barry start calling her “Mom“.
Barry put’s on a Mother’s Day show every year. He says “I was a wonderful mother. ” When Barry and I married, we discussed children. He asked if I was okay with not having a child. He said he was ready to focus on home and retiring. I was good with that. Our health issues haven’t allowed us to do everything we wanted, but we still enjoy each and everyday. We now have a beloved family pet boxer, named Maggie. She thinks she is human. In a sense, I’m mothering our family pooch.
Barry’s mom passed away a few months before he proposed. I was lucky enough to spend a little time with her. She was a sweet, wonderful woman. I know where her son gets it from.We did agree on one thing. We started to make the same statement at the same time once. That statement was, “He sure does have the best-looking legs around!” She turned and looked at me oddly and said, “I knew I liked you!” When Barry got in the car to find us giggling, he wanted to know if he should be worried. His mom looked at me and smiled. We didn’t say a word. Barry started the car and headed to the restaurant.
My mom is a character. I told Barry stories before he met her. He later told me it found my stories hard to believe, until mom started letting the true Betty out in front of him. Mom is a doll and a beautiful woman. She is the perfect work the room character. As long as things are going her way, she is fine. I love her to pieces and look like I could be her twin. I will do anything in the world for her, when I can. Mom living with us has been great. I’m getting to know mom better than I ever have.
Her health is declining and I am trying to help her deal with or understand the changes her body is going through. She is actually listening to me and learning about her illness. Telling my mother the truth about things she does Isn’t easy. I’m getting better at it and she is taking it better. She has not taken my illness well. I’ve had to ask her to change certain behaviors to help me deal with my health.
My sister’s and I got our families together and took her out for lunch on Mother’s Day. Barry and I treated her to a new haircut. She really looks great. Sandy has taken her on a trip to North Carolina; to see her grandson graduate from college.I hope she is enjoying herself. She deserve’ it. She is my mom’s.
my momma
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.
Two Rights Attempting To Make A Left! 
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