Is this the color to start chemo with?
Category Archives: Coping Skills
Writing through cancer: For the Week of June 23, 2013: How Do You Want to Be Remembered?
Of late, I’m going to be known as the aunt that was turned into a witch after brain surgery. I want to see what I can do to change that. Everyone has so much to do that no one has time to remember what family is and how to treat each other. Everyone also needs to remember that they are not the only ones with full lives. We all have busy, full lives.
My family needs to realize that I will never be the person I used to be before and I cannot be forced backward into that person. My body is not the same and avoiding me is not the way to handle things. Barry is not the same either. We are both different and having mom in the house does not mean AVOID AVOID AVOID. WE ARE PART OF THE FAMILY and always will be. We may just be aunts and uncles, it doesn’t mean put us out of the family.
We would love to be known as a loving couple that welcomed their family with open arms whenever needed. The smart uncle and creative aunt that would fo anything for anyone. Not be isolated and un-notified of family gatherings.
Brain injuries, strokes and dementia cause changes to the brain, as well as the brain chemistry. All the above can cause changes in behavior. They can be managed by medications, but will always be there. This does not mean a person is CRAZY!
Barry and I don’t want to be remembered as the crazy Aunt and Uncle that took care of Me-maw in her later days. We’d like to be known as the full of life couple that participates in everything with the family and greatly enjoyed every minute. We want to be known as abfamily-oriented couple.
We only need to know when something is happening. Telephones work two ways these days. I plan to do better with communication. I’m just hoping pther people reading this do the same. It only takes a second to make a phone call.
Lunch at Applebees: A New Barry Moment
Barry and I had lunch at the local Applebees. I guess we eat there too often, they know us by name and remember our usuals.
We tried out there new summer menu, but we stayed on the lighter side. Gave me a few ideas to try at home. We’ll see.
The waitress brought our check out. Barry gave her what was needed to handle the bill. As he gave it to her for processing, he said, “If that card doesn’t work, I have a doctor’s excuse that allows me to wash dishes.”
When she returned after processing the payment, she stated, “You can do dishes if you want, but the card went through.”
I quickly told her, “I do not know him, he offered me lunch and I said sure.”
She said, “Hey, you got a free lunch” and sped off back to work.
Barry can be such a clown. I love him for trying to lighten my mood. We have a huge day ahead of us and he knows I stressing a little. He is just a sweetheart.
Ms.Mater, the first resident I assessed for admission to a Personal Care Home
As I walked down the hallway, toward Ms. Mater’s room, the air was filled with laughter. I knocked on the door four times before someone heard me. I was instructed to “come in”. I looked around the room as I walked in. The room was full of resident’s of the home, as well as employees. Ms. Mater was the center of attention. I was about to discover that she loved every minute.
Ms. Mater had suffered a debilatating stroke and upon discharge from rehabilitation, she was scheduled to move into our building. All of this was a preliminary arrangement, based on the results of the assessment I was about to go through with her. Procedure, procedure, procedure…….
I introduced myself and asked a staffmember to assist with the other resident’s; I needed Ms. Mater to myself to complete the assessment.
Once alone with my new friend, she started cracking jokes. This sweet, little, gray-haired lady was hilarious! She had me about to wet myself within seconds. Within minutes we were fast friends. A friendship that continues today. Even though she can’t hear me, we speak several times monthly and we visit when in the area. Neither of us gets out like we used to, but we enjoy life.
Ms. Mater elegantly answered my questions and performed the tasks I asked of her, without complaint and to the best of her current abilities. She made no excuses for her defeciencies, she joked them off. As we worked, she told me stories of her childhood. She claimed to have grown up being called “The Ugly Duckling”
I just could not see it, she had such a timeless beauty. She said she grew up on her farm, the oldest of three girls. She was born with a headful of flaming red curls and as each of her sisters were born, they had Strawberry blonde curls. She said she was furious, until they grew up and she was prettier than both of them. From what I heard, she did not mind sharing that fact at all.
The only clue she was ever a red-head, was the red tint in her silver hair. It almost appeared to be blonde or light brown. She never left her room without being immaculately dressed, with makeup and lipstick perfect.
She had a set weekly appointment with beautician. I was sworn to secrecy over how she keeps her hair in place at night. It is actually a little funny. She doesn’t know it, but I have a photo of her sleeping in her get-up.
Ms. Mater was crazy about my now husband. She repeatedly told me that if she were twenty years younger, she’d take Barry away from me. I wouldn’t put it past her to at least try. Ms. Mater always said she loved me due to my “smart-…” attitude. I’d just say “back at you”and keep going.
When I need to cheer myself or need a little giggle, I think of Ms. Mater. It always makes me smile. I can see her sitting in my office chair, telling everything I need to get done “around here”. Cheers me right up! I’ll usually give her a call later that evening. I miss having her around!
Tomorrow
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!
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Personal Prayer Request
I believe in the power of prayer. I have seen too many things in my lifetime that proves there is. On this date, I am asking that everyone pray for my father, Lee Van Hayes. He received some extremely bad news from his doctor today. I think we were all expecting it, even dad, but hearing those words are not easy. WordPress Blogs are full of love and kindness, with a few freaky things added in. I’d love it if I could take my computer to Pop and show him all the well wishes received from my fellow bloggers.
WordPress reaches tons of people. It would be such a wondrous thing to get at least half the people, in our blogosphere, saying a little prayer for one special man. I know he is not special to everyone, but he is to my family and his friends. My dad doesn’t meet strangers, he likes everyone. He is just the biggest sweetheart on earth! My family, as well as Barry and I would greatly appreciate any small wish of good health or just a hope you are feeling better soon.
We are to the point that prayer is the answer. Dad is in God‘s hands and he will take care of him. Thank you in advance for anything you say!
If my comments section is not working yet, please use the email available for my blog: geegeebear3@gmail.com.
Have a bless day!
Barry and Jill
and the family of LeeVan Hayes
English: The logo of the blogging software WordPress. Deutsch: WordPress Logo 中文: WordPress Logo (Photo credit: Wikipedia)
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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.
Daily Prompt: Person of the Year
You’re asked to nominate someone for TIME’s Person of the Year. Who would it be, and why?
My nominee for Time’s Person of the Year would be my best friend, the love of my life, Mr. Barry L. Baynes. He does not feel he would deserve such an honor, but in my eyes he was the only person I would consider nominating. He has been my night in shining armor for several years.
Barry suffered a massive right-sided stroke in Dec. 2012. I almost lost him. His percerverence and determination not to let that stroke get him down, has given me strength and will to push through the health issues I have currently and really push myself into recovery and staying healthy.
Barry has been my love, my companion and my chauffer through what feels like millions of appointments with numerous doctors.
We started the year off running in January, with a referral to a breast specialist at Emory over something suspicious on a mammogram. We were off to learn our way around another section of Emory University Hospital‘s clinics. (By now, Barry and I should have a wing dedicated to whatever we want.)
When Barry was not feeling well, he was there, never complaining always supportive. He gets stronger (from the stroke) daily. I can see the changes. He strength never faltered.
He has been my rock, he let me draw on his strength as I needed to. He was always positive. As doctors delivered news we really did not want to hear, Barry had a smile on his face. He tried to keep my mood elevated the best he could.
When I knew he wasn’t feeling his best, he tried to not let it show. He is always encouraging and loving.
All of the above are reasons, Mr. Barry L. Baynes, would be my nominee for Time’s Person of the Year. I could not think of anyone more deserving of this award.
Jill and Barry Baynes
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?
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For the Week of June 9, 2013: When You’re Laughin’…
When You’re Laughin’…
I may have written about this one before, but I giggle to myself everytime I think about it! My father is such a caefree soul. Nothing ever appears to phase him. He could be pants’ ed by a naked clown and nothing, no response. I guess I get it from him. It takes a lot to get me going. If I am to the point of tears, leave me alone. If it is happy tears, point me to the bathroom quickly.
My dad was out out for lunch with his girlfriend, Charlene. They had a great time at lunch and were getting ready to leave. Pop got the check from the waitress and was headed to pay the check, while Charlene checked her make-up. While standing in line, a car in the parking lot caught dad’s attention. He thought he recognized someone.
The cashier said next, pop went to take a step forward when he realized his pants are around his ankles. He non-chalantly looks around the room, no one appears to have noticed. He slowly leans over, to grab his pants. He quickly pulls them up, as he glances around the room. He wants to make sure no one has seen what happened. When he was sure his pants were secue, he ran to the car.
He and Ms. Charlene have never eaten at that restaurant again. I can’t believe my dad was actually embarassed.
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