Late, but worth it!

God has been good to us! With our troubles, we are happy, getting healthy, in love, looking forward to our future together and hopefully looking at leaving our maladies behind.

Life goes on. Please forgive us for becoming fairly non-existent since  early 2014. Barry and I have managed to move four times; without killing one another. I am learning that I have a smidge of patience; instead of it being part of my everyday life. I despise three words (Time,  Appointments and Doctors). I hate depending on people to take me places; much less help me do anything that personal (eyebrows, nails, etc…. Is it in the plan for the hair on your face to quadruple when you get above the age of 50?)

I truly understand the Lord has a plan for each of us and we should not question those plans. I will stop sounding like I mean to question the plan; just a little frustrated and sounding off. I am working on sounding off…..I am working hard on giving things to Jesus. I found it hard, to just cut things off and hand it all over to Jesus. day by day, as I study the Bible and life gets easier and I can now state, “if the call comes I am ready to go”. I beleive I have always known this, my mind and body had to sync up. I am no longer worried about my sweetheart. When I look at him, I see peace in his eyes. He deserves it!

by Jill B.

Dreadful Doctors

My title is not fair to all doctor’s. I enjoy the physicians I am currently working with. The dread I am referring to is what they are going to tell me or ask me to do.  Since 2012, the neurologist I see thinks he needs to change the medications I am taking, just to see if something new will help.

What I have discovered and verbalize to them is “NOTHING HELPS”.  I feel like a lab rat at times. Actually had one physician say I should feel honored to be in his presence because is that good! Needless to say, I refuse to ever see him again.

I have enjoyed working with the rehab center and the cancer specialist. They try to cover every aspect of care a patient may need. They offer incredible services at Winship.

After everything, we have been through, it is wonderful to be treated special after certain diagnoses. The sad part is the numbers of people in and out of the doctors offices at Winship.

One of the things that I dread yearly, is my thyroid scan. It is such a long process and it takes all week just to get to the point where the scan can be done. For some reason, My Protein levels are staying elevated and thyroid cancer is playing hide and seek in my throat. The last PET Scan showed there is still something in my neck. Hopefully, this will be the last treatment for a few years. This is only the fifth time since 2009.

Personally, I am ready to run away from home. I put a smile on my face and keep going. I refuse to let this or anyone get me down. I need to take care of myself, Barry, Maggie and mom.  I am faithful the the Good Lord will be by my side through the next week. It has been a bad couple of weeks and it is time to turn things around. Have a joyful week everyone!

Absolute Worst Two Weeks Of My Life

The past five years were the beginning of our on-going nightmare. It has been one serious medical issue after another.

Two weeks ago, Barry was hooking the computer to the television for us to stream the evening service. Barry suddenly starts to fall straight backwards. I called out to him several times, without response. Barry takes a blood thinner, so he truly did not need a lump on his head.

When his head hit the wooden ledge on the front door, he started convulsing. He ended up on his right side, I checked him for injuries, covered him up with a blanket and got a pillow. After around three minutes, he started coming around. He was quite confused and wanting to know what happened. By this time, I had gotten mom and 911 had been called. They were incredibly slow. Apparently, the county EMS was hopping all night.

Once in the Emergency Room, they got things going. There was something going on with his heart. He had a strange arrhythmia that the hospital felt needed more attention, so he was admitted.

The next night, there was another episode opting a move to the ICU for better observation. I found out about the transfer when Barry called the next morning to say he was being trasferred to Saint Joseph’s Hospital within the next hour.

I got ready and headed to Atlanta, as quickly as I could. My sweetheart does not like hospitals and I knew he would not want to be alone. I stayed with Barry for two nights.

Then I had a chemo treatment and on Saturday, the injection to boost my white blood cells. The day of my chemo treatment, they discovered a blood clot under my right arm. I started the injections they ordered before chemo. The next day my right arm was acting up, so I requested to see the infusion center fellow doctor. Since starting the injections, shortness of breath occurred everytime I preformed a task or stood up to walk. I was concerned the clot had moved to my lung.

I was sent straight to the Emergency Room for evaluation. We chose to go to the hospital Barry was in. He was already downstairs having a pacemaker put in. Due to my injection, I was unable to see Barry before the procedure.

Our wonderful pastor made it just in time. Barry was thrilled to see him coming. While I was being evaluated, my sister went to check on Barry and let him know what was going on. He was worried. I tried to convince him I was fine, but do men ever really hear what their wives say?

I was released with a diagnosis of pneumonia. More drugs to take. Gotta love it! Kristie and I almost ran to his room. Kristie needed to get on the road soon. Not only does she have a husband and two boys, she had taken the role of chief caregiver to our father. Barry wanted me to stay, but I was running a fever. He had more test scheduled for the next day, he’d never know I was there or not.

We headed home and packed a bag. I was ready for the next day. My nephew was picking me up to drop me at the hospital for a few days. I wore a mask when I had the fever, and removed it when I did not. We met Barry’s surgeon that morning. They were scheduling his surgery for morning. During the night, I recieved a call that my father had passed away. After surgery, I would not be able to see him. He would be moved to CVICU and I would not be able to see him freely. His doctor told me to go home and come back when he is stable.

Barry had an abcess in his heart and the wall of his heart was erroding. They had to re-build a section of the heart to be able to get a valve in and they were unable to use the mechanical valve. A pig valve was placed. He has been in ICU for over 6 days and today, they finally got him off the venilator. He was up in a chair last time I spoke to the nurse. Such a huge improvement since last week. I was terrified of loosing him. I lost my father.

My blog post my be scattered, but I will get back to normal soon. Missed you all!

Jill

Writing Through Cancer | For the Week of August 4, 2013: Can It Get Any Worse?

Can it get any worse?  Maybe so, but then again, maybe not.  Hope keeps us moving ahead, one step at a time.  Think of a times you were dealt bad news, your own or someone else’s?   How did you first react?  How did you get through a difficult period in your life?   What helped?  How did you find the strength—even hope—to cope and begin to heal?  How did you find a way to reverse the course and bit by bit,  make your life better?

When life decided I needed to make lemonade, someone had a truck load of lemons delivered and dumped them by garage door. I guess for easy access from the kitchen. God knows I have trouble walking, I guess he was just trying to help out.

Hope keeps you going, but the Lord above is raining that hope down on our situation. We need a good saturation of hope. Through our bible studies and attending church regularly, I think we are finally relaxing as issues occur and giving things to God.

Dealing with my diagnosis has becomes easier daily. I’m adapting the attitude. when

I am working on handing all my issues over to the Good Lord above. Currently Barry and I need all the help we can get. It seems like everyday day gets a little tougher.

If you follow our blog, you know our history, but what you do not know is that my mother lives with us. She has her separate living space, but has no boundaries. Mom is newly diagnosed with Bipolar Disorder and the beginning stages of Lewy Body Dementia. If interested. to find out more about Lewy Body Dementia, follow the following link, http://www.lbda.org/

It was the hardest thing I have ever done in my life. Leaving mom at a hospital to treat mental health issues. That’s my mommy! I’m supposed to take care of her. I cried the entire day we took her over to the hospital.

On top of managing chemotherapy for breast cancer, managing my mom’s care, making sure Barry is OK and assisting my sister when I can with my dad; Barry and I do what we can to help out at church. We are slowly working into volunteering more often, as my energy level rises. We are truly enjoying it.

My dad has been given an undetermined amount of time to live. He is suffering from  heart, kidney and liver failure. He has moved into my younger sister’s extra room and monitored by hospice. If anyone needs help with anything, please let me know. Barry and I will see what we can do.

When we first found out about dad, it was the day I found out I have breast cancer. I didn’t know what to do or how to feel. Dealing with the two is a t of emotion to handle at once.

Talking with my sister’s and my blog has helped me pull through this mess. We are taking one day at a time, one problem at a time. We are all hoping daddy will surprise us all, and turn things around. Hope keeps us going, but knowing his salvation will  bring peace to each of us.

On chemotherapy, I have not been able to aid my sisters as much as I would like to with dad.  The brunt of his care has fallen on Sandy and Kristie. They both know I would be right there with them if I could, dad knows to. My daddy knows I love him. Barry lost his father at a young age. He is my rock, my strength as usual.

I’ll finish this up tomorrow. I’m pooped. Sweet dreams. Mom has gained a little weight. We need to take her dress shopping tomorrow. Could be interesting.

The daily prompts I write from each week come from the following blog by Sharon Bray:

http://writingthroughcancer.com/

Follow the link to her blog. She is incredible! Thank you, Sharon…..Jill Baynes

 

My mother’s appetite

Today, we arrived at my sister’s home to sit with pop while Kristie took Little Man to an appointment. The minute mom walked in the house, she had a plate of what Kristie was cooking for supper and had made herself comfy at the dining room table. It was getting late, so they rushed off to the apointment.

The minute they walked back in the house, mom sat her drink down next to her bag of candy. She headed straight for the kitchen again. She returned with a bowl of bean soup and cornbread. After that, she returned with a slice of cornbread. She said she wasn’t full yet, so she made a ham sandwich for the road. She finished the sandwich before she left and went after the cornbread again. My sister asked me to get her out of there, so she didn’t have to bake more bread.

All of this eating took place in about 10 minutes. I took her bowl away and said it is time to go mom. She grabbed her purse and headed for the door.

Parents: Raising them

Currently my father continues to have spells of v-fib and passing out. For some reason, his implanted pacemaker/defibrillator does not fire properly. 

I received a call from my sister, that it has happened again and he is in an ambulance on the way back to the hospital. She did not know his status once in the ambulance, but was on the way to the Emergency Room. She told me to stay home and take care of myself, that she swears she will call as soon as she has news.

I had a chemotherapy treatment last friday and a hospital emergency room is the last place I need to be at the moment. I’m exhausted and my bones ache like crazy, so I’m going to kick my feet up and rest.

My mother appears to be having an issue with the amount of attention my dad is getting from the three of us. She has a doctor’s follow-up after cataract surgery scheduled tomorrow. I asked if it was ok to reschedule, so I could be there with Kristie to help sign him into hospice. Mom agreed and went to her part of the house to makeba call.

When I went to tell her it was rescheduled, she was on the phone complaining that we are ignoring her needs and not getting her where she needs to be. She was talking to one of her sisters.

This is totally untrue. My dad is not well and not expected to live. I just do not get this childish stuff.  I know she has an ilness affecting her thought processes, but it is not exactly the same.

I asked her to please verbalize if she has an issue with a schedule change. She says she will. What else do we do?

My Sisters, Wonder Woman in disguise…..Bet you never knew there were three

I am the middle child of three girls. We grew up in a small-town called Winder, Georgia, in the late seventies into the eighties. We are quite a mix, but we make it work. We all have excessively busy lives. We live within 30 minutes of each other and hardly ever see one another.

I’ll start with the oldest, Sandy, Wonder Women number one. She is hardworking, smart,detail oriented, sweet, loving, caring, kind-hearted, meticulous, adores her children and grandchidren, keeps an emmaculate home, takes incredible care of her husband, whom is wheelchair-bound from a spinal cord tumor. Dennis gets around and takes care of himdelf during the day, he even drives. He manages several household chores and always makes sure Sandy has a hot meal ready at night. She is the secretary at her church and drives a school bus for the county they live in.

She likes things done her way or no way; she doesn’t care to see things go wrong; she believes it is ok to plan gatherings the day before she wants to have it; she tells you what time something will start or what time she will arrive, but is always on average two hours late; but on the other hand. She has my love and respect, but I have to admit, I do not know how she does it. I would have packedup and run away a long time ago. She is one tired, incredible woman and I love her dearly. 

Our relationship has changed since I got sick. I miss the relationship Sandy and I had. We will probably never get it back. I had enough trouble accepting the “new me”, how can I expect others to understand and accept the changes I deal with daily. I just want to be included. If I am able, I’ll be there!

Brain injuries make a person vulnerable to infections and other things that could be deadly. That fact has kept me closer to home in the past few years. I’m a great aunt, now. I’d love to be able to play and have fun with them, just as I did her kids growing up. We had some great times.

Enough of that. Let’s get to Wonder Women number two, my younger sister, Kristie. Kristie is sweet, kind-hearted, loving, caring, smart, adores her dhildren and husband, focused, detail-oriented, hard-working, and is currently using her super powers to take care of father, who is gravely ill. Sandy snd I have helped when we could, but it hasn’t been close to enough to give her a break.

Kristie surprised me after I had brain surgery, she visited daily for a few weeks and cooked several meals, so we wouldn’t have to worry about it. She helped get me to rehab when Barry had a conflict. This was so sweet. Not that she hasn’t been sweet in the past,  Barry and I just were not expecting it. Thank you, Kris!

Kristie has a quick temper and let you know when she thinks you are wrong. I did not witness this, but she took a 6’6″ man to the ground and beat him up. Mom called her a “lightening bolt” when getting her up for school in our younger days. She still carries a bolt in her back pocket.

I love both my sisters with all my heart and will do anything in the world for both of them. Thank you both for being there when I have needed you! I could not have gotten better sisters if I had ordered them from a catalog. God truly blessed me in the sister department! Thank you, Dear Lord for my sisters!

When it is our turn to be the parent

As many of you know, my mother lives with Barry and I. The task has gotten easier, but it makes it tough on the relationship between the three of us. Mom doesn’t want to take ownership of her illness and when Barry and I do things to assist her level of function; she accuses us of treating her like a child.

With her memory becoming an issue, she has become difficult to handle in public on certain days. I have to judge her mood before we go out of the house. We had an issue at Wal-Mart, when Barry and I were not getting to her shopping list fast enough. It was quite interesting to have your mother screaming in a public place, becsuse she did not want to forget the cat food.

At church, several Sundays ago, in the middle of Worship Service mom had a question pop in her head for the Pastor. Durng the middle of the sermon, she got up and headed for the pulpit. The Pastor motioned for someone to take her aside to see if they could help. I froze, when I saw what she was doing. I was unsure of what to do or if I should do anything. The Pastor saved the day.

At home, things are working better becauee we have a set routine. Mom is learning to use the whiteboard and makes a list daily of things she would like to accomplish. When we have downtime, I suggest a task for the day that will keep her busy. Mom is helping us do the cooking, she loves to cook and really loves making us eat right. Barry is enjoying having her around finally. If we can speed up her getting ready to go time, life will get even better. Her vurrent get ready speed is around three hours.

On a different note, my father was admitted to the hospital again yesterday. His health is failing fast. It breaks my heart to see him so weak. He has such a strong will and is losing it quickly. Please send a few prayers his way. We can use all we can get!

Mom
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