Category Archives: adaptation/adjustment

Our September

Posted on by

●get Barry home and comfy
●finish chemo
●setup radiation
●organize and get all medications (mine, Barry’s ans mom’s), make sure they take them
●coordinate with visiting nurses for home IV antiobiotics
●Coordinate my appointments, with Barry’s and momma’s
●arrange assistance with appointments
●get hospital bed for Barry
●Take Barry’s vital signs three times daily
●Keep dressing on pic line intact
●Take care of dog and cat
●make sure Barry tries to eat
●AM Care for hubby
●PM Care for Barry
●Dressing assistance when needed
●make sure he gets enough rest
●haircut regularly
●pay bills
●cook breaskfast, lunch snd supper
● do laundry when mom can help

I just wanted to see a list. Might I add that the calendar had no free days available by the first Saturday in September. Our new Jeep is getting quite a workout. It actually runs better since the repairs were made after I filled our new diesel with unleaded. What a Bonehead move to make.Have a great day everyone!

Our August

Posted on by
  • My dad was on Hospice Care and not doing well. He had a nasty cold and with me on chemotherapy, I could not go see him. My immune system was too low.
  • The Eighth of August was the start of my nightmare month. While attempting to hook the computer to the television, Barry past out cold, hit his head on the front door and appeared to have a seizure.  I could not get 911 fast enough. He was admitted from the ER with an arrhythmia.
  • Two mornings later, I received a call from Barry letting me know they had moved him to ICU during the night and were now planning to transfer him to another hospital.  No hospital employee ever contacted me.
  • Once at the other hospital, he was admitted to their Cardiac Care Unit for close observation.
  • Within  2 days. he was having a pacemaker put in.
  • At my chemo treatment, it was discovered that I had a blood clot in axillary vein under my right arm. When I went in for my injection after chemo, the doctor felt I needed to go to the ER for evaluation. I was short of breath and had chest pain. At least I got to go to the ER at the hospital Barry was in. I was closer to him, although I couldn’t see him before or immediately after the pacemaker surgery. Our Pastor was the perfect substitute. He is such a gracious man.
  •  As it turned out, I had pneumonia, thank goodness the blood clot had not moved to my lungs.They wanted to admit me, but I wanted to be with Barry.
  • A fever, 103, kept me home for a few days
  • He was in bad shape and needed immediate heart surgery
  • I could not get there fast enough. I spent the night before with him.
  • I found out my dad passed away three hours before Barry’s surgery.
  • Our Pastor and an Associate stayed with me during his surgery.  They brought coffee and donuts.
  • I was driven home, after we saw Barry was stable, by my pastor that night. My fever had popped it’s ugly head up again.
  • Our Pastor and an Associate stayed with me during his surgery.  They brought coffee and donuts. It stayed with me for the next week.
  • Someone from the church, Jason W.  and our nephew, Derrek checked on Barry for me while I was out of commission. I was actually chewing on the front door wanting to get to the hospital.
  • Once my fever got out the door, I spent the next 4 days at the hospital and ended up being able to take my sweetheart home with me. 20 days after being admitted. I found out the surgery they did was a mercy surgery. Barry was close to death and almost died during the surgery.
  • I spent the weekend attending the funeral for my dad.
  • On the way home from the hospital, We stopped for gas. We have a diesel Jeep. The station we stopped at was making renovations and still had a diesel sticker on a now unleaded pump. Needless to say, I filled the Jeep with unleaded gas. We were stranded for 4 hours until a wrecker arrived. We arrived home at 11pm.

Is that enough to deal with or do you want more? This isn’t all. My poor pup was home taking care of mom and the house.

We would like to thank everyone that helped make it through this bad, bad month! We love you all!

Through the Grace of our Heavenly Father, we are both alive and kicking. Maybe a little grayer and a I know a lot tired. We are here! Thank you, Dear Lord!

Related articles

Good People still Exist

Posted on by

I recently witnessed a beautiful selfless act. I was talking to a future grandmother, with an unwed daughter not yet out of school.

A gentleman walked up and asked ” May I intrude for a moment?” 

We said “of course”.

He leaned over and whispered something into my friends ear, then hugged her neck before placing something in her hand.

Once he was gone, my friend handed me an envelope and told me to “look inside”.  I was holding an envelope with a large sum of money inside.

He had stated to her to “use this to help your babies”.

There are still “good people” out there.

I’m going on a blogation

Posted on by

For those faithful followers, please don’t give up on me. My life needs my full attention for the time being. Barry is recovering well,  physically and mentally,  but his recovery is my number one priority at the moment. I will do my best to keep at least one post a week going. Have a great fall. Hope to be writing faithfully again soon!

Please keep us in your thoughts and prayers! God bless you all! Please email me anytime at

tworightsattemptingtomakealeft@gmail.com.

I love email.

Thanks! Jill B.

Related articles

I want to write, but I am at a loss of words!

Posted on by

God doesn’t give you things you can’t handle, the things He gives you make you stronger. I can handle a lot, but just not sure how much more I can take.

When does your cracking point kick in? Do we have a cracking point or are we made to take and take and take…more more…How do you judge when enough is enough?

Is it that when God sees you  overwhelmed, he releases the more more and gives you a break?  I am not going to lie, I could use a huge break, but I am not sure my sweet husband can handle a break. At least over the next few weeks. We have to get the house ready for him to come home.

For the next six weeks, he will be on IV antibiotics and then oral antibiotics the rest of his life. A physical therapist will work on his strength at home, but I am still terrified. His lungs are filling up with fluid again, even sleeping with a bi-pap machine on. He is off oxygen all together, but I’m scared.I want to be able to care for him properly at home.

I was the one that couldn’t tell he was sick. He started showing signs of not feeling well, but refused to admit something was wrong and would not go to the doctor. I feel guilty that I didn’t push, now his cardiologist can’t give me a good answer about how much time he has. I can tell he is stressing over it, but he won’t talk to me. I have him scheduled with his psychiatrist at the first of the month. Surely home will be our new location by then.

I ask that everyone help me pray for grace, strength and mercy. Maybe with enough Faith added to the list, Barry and I will survive. Forgive my ramblings today, I am still am emotional disaster.

That dreadful place called the hospital, It was so hard to leave him there

Posted on by

Sitting here, in no way can this place  be called fun. I am beginning to understand why people do not like hospitals. Yes, they are places where the sick or injured come to be healed. Hospitals are meant to be full of joy at the birth of a child,  or extremely sad watching a loved one in pain.

Painful things happen in hospitals. A lot of people do not how what or how their bodies work making things painful and scary. Some people experience trauma or have bad memories or cannot handle the emotions that hospitals bring out in you. Others just do not like pain.

The one I am sitting with loves being at home, in his recliner, his wife in her chair next to him and the dog sitting at his feet. Water glass next to him on the table, watching a crazy comedy on the television. He has his cute little quirky sense of humor. I never know what to expect out of his mouth. He even talks for the dog! It is so funny! She just turns her head side to side looking at him like he is nuts.

 

They want me to place him in a long-term care hospital. I do not feel that is where he needs to be, but I’m not a doctor. In my opinion, that will only make him worse. He needs some rehab. I can see a rehab center.

In the two days I have been with him, he has perked up.  Getting in and out of bed on his own (even when the staff did not want him too) He’s getting adventurous, I just hope he does not hurt himself. I love him so much it hurts. The thought of being without Barry, well, it kills me. We aren’t at the age that this kind of thing is expected. I just feel so very lost.

Related articles

Absolute Worst Two Weeks Of My Life

Posted on by

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

A Night I Wish Would Just Go Away| Another

Posted on by

After Barry’s stroke in 2011, I was praying that similiar episodes would be at least ten to fifteen plus years down the road. But as we all know, it is not our choice.
God’s plan guides the flow of our lives. We have knowledge of the plan’s existence,  but we have no choice in the details or are we given choices of how our plan plays out. God knows. Only he has knowledge of our life plans.

Since 2010, Barry had an aortic valve replacement; a large territory, massive MCA; and now last night, a seizure has been added to the list. The etiology is currently unknown. Other than having every test in the book today, they can’t seem to figure it out. He has swelling on the side of the old stroke, but no other results.

Last night he was connecting the computer to the television, so that we could watch the live stream of our Wednesday night church service. We chose not to go last night because I had run a fever most of the day. He was standing at the computer, near the television when I realized he was falling backwards. I called out to him several times without a response.

I started calling for my mom to help. She called 911 to get an ambulance. He hit the front door, with the back of his head, and started shaking from head to toe.  He was kicking his legs and flinging his arms. About five minutes into the seizure, he came out of it and started to talk. He didn’t know what had happened and wanted to know why he was in the floor.

When I wa able to check him out, he has a lump on the back, left side of his head about the size of a grapefruit. It is still swollen today, but getting tender. He is having a little pain in his left shin. They said they were going to do an ultrasound to make sure he isn’t forming a clot. He started getting back to normal, but I made him lie still until the ambulance arrived.

They checked him out, loaded him up and headed to the hospital. We’ve been here since nine o’clock last night. He rested well, I just want info on the problem! Wish us luck! An Associate Pastor came out from church. We had a nice visit. He has had a few calls from other church members.The Good Lord is with us, but please keep us in your prayers! Thanks to all of you for your continued support and kindness!

Jill B.

Writing Through Cancer | For the Week of August 4, 2013: Can It Get Any Worse? Part 2

Posted on by

Part 2

My strength comes from the Lord, my family, and my handsome husband Barry. I draw a bit of strength from each of these people. Together, day by day, problem after problem, we grow stronger as a group. The easiest way to deal with issues is one at a time, one day at a time.”Hope springs eternal”, from Alexander Pope, An Essay on Man. That quote says it all. Keep hope alive.

Barry and I are adapting well to dealing with our illnesses. We had to get re-acquainted with each, but everything has worked out. He had to retire.  The stroke left him unable to handle working full-time. Barry  made adjustments around to house to aid me in normal daily function. He helped Libor and Jonny build a porch and ramp off the front of dad’s home. Worked beautifully.

There is no course reversal for my illness. There is only management and learning to cope. You keep up with your yearly appointments, take your medications as prescribed, eat healthy, and exercise. Cowden’s Syndrome is a rare disorder about a mutated gene in my DNA. To learn more, follow the link. http://en.wikipedia.org/wiki/Cowden_syndrome is related toLDD: which is just a symptom of Cowden Syndrome. http://en.wikipedia.org/wiki/Lhermitte%E2%80%93Duclos_disease

No one looks forward to losing a loved one. I for one, can definitely say, I am not ready to lose my dad, Barry lost his father at a younger age, so he is helping me deal with the emotions, while I take care of my health. My sister’s are in the boat with me. We’d like to keep mom and dad around forever. But that is not in God‘s Plan. Only he knows when it is our time to be with him. So, One day at a time. Slow as we go, enjoy every minute we have.

 

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

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

Posted on by

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