It's been a really long time since I've blogged, May, and I am not even sure if I hit publish. To explain it, it's been part a privacy issue and part not wanting to let you in. I wear my heart on my sleeve. I am easy to read. I am honest. But I am also protective. Shy. Scared. Scarred. Lonely. Fed up. Bitter...
There is so much more. But I don't want to scare or scar you. So this is my gut check, as it's been too long. To be honest. Maybe even honest to a fault. Life has handed us a shitty hand. It's going to be a long hand, or life, or whatever. I keep reminding myself of this quote... "Death is peaceful, it is easy. Life is hard." There are moments that I wish I didn't understand the gravity of that statement. I know it all too well. Well, not the death part, but there are times I have wished it was real for me. No, please don't think I am suicidal. I am not. I would not take my life. It's selfish. That is one thing I am not. TO A FAULT. Instead, I face every day. Some days I have a smile and I can face it. Some days I cannot. I don't go out those days. If I do, then I am wearing sunglasses. Regardless of the sun.
Instead of running and taking the easy way out. I am standing tall. I am working my hardest to put this disaster behind us. Maybe that's my problem. Maybe I am not standing there and experiencing it. I don't know. Sometimes you have to experience the bad to get through it. I thought about a year ago we had hit our rock bottom. Boy, was I wrong. I believe we are there now. I don't know, though. I guess it could worse. One of us could really die. No, I'm not trying to be morbid, just trying to see if there is still a silver lining for us. Not that death would be our silver lining. It wouldn't. But the fact that we aren't truly at a rock bottom, meaning death, has to be it,I think.
If you see me, I'm not going to be honest right now. I'm going to tell you I am okay. Don't believe me. I am not. But I won't tell you. No, I am not lying. At that moment I am protecting you and of course me. Why you? Because usually in casual conversations, when you ask if someone is okay, you don't want the nitty gritty. You want casual. And me, because I can't do it. I've been avoiding the major meltdown for a while now. A few months, I think. And it's there. The cliff is there. I am afraid I won't be able to pick myself up from it. I am the strong one. I am the one that smiles through it all. I can't...
I am protecting The Hubs, why? Because he is struggling and if he sees this, he's going to think he's causing it. He's not. It's just the way it worked out. I got stuck in the past. I really did. I wanted the happiness we have experienced before I got sick. Not saying there haven't been good moments, but life has a way of sucking the joy out of my soul. Therefore, my weakness, was and continues to be, not accepting who I am anymore. Then he got sick. Not accepting his sickness has been the worse part of this. The moment I stopped and really let it sink in, well, let's just say was hard. Unfortunatley for me, I let it sink in, but I didn't accept it, still. Writing this, is making me accept he is sick. He may never be the man I married. As, he now is married to someone else, I will forever be married to someone else.
I am protecting our kids. They know life is different. They are extremely aware of what is going on. They were young when I got sick, but they counted on their dad to be there. So now, we both are sick. That's a hard pill to swallow. They will take moments from this, I am sure, and grow and be wise and they will understand things children should never know. I am proud of them. Not one of them have expressed their disdain with life. They are easy going, they are adaptable. I'm amazed.
Friends and Family (Both, as there isn't one that doesn't belong in both categories). Thank you for those that have rallied with us. This journey is made sweeter because you are along for the ride. There is much more I would like to say, but I can't,because, tears.
I am sure of a few things. We are in this. Neither one of us is running. We are each other's advocate. We will get there, wherever there is. Getting there is going to be the hardest thing we have ever done together. I sometimes question my strength. I have to tell you, it would be so much easier to run. To walk away. But I am damn proud of both of us. We have fought back all of our relationship. From the time he was 18 and I was 15 and it was us against the world, we have fought. We will continue, but it will be hard. I will lose my shit, repeaditly. He will bark at me. But we will come out of this on the flip side, stronger. STRONGER!
Sunday, November 2, 2014
Sunday, May 11, 2014
One dose in.
Good Sunday Morning,
Dose one is in. It's been a whirlwind of emotions, and that's just me. The Hubs is okay. Thursday was a rough day. He slept some Wednesday night. It was a good idea to take the meds when he got home from work, he was able to sleep through some of the side effects. Unfortunately when he woke Thursday, he was in for the bad. His fingers and toes were fat little sausages and his pain had become something fierce. He slept most of the morning. I was grateful for that because leading up to this, he wasn't sleeping. He tried getting up around noon. It didn't work. His pain was much too intense to try to focus. Speaking of focusing, yeah, no. It's funny how quickly you become clouded. He was. He had major cold and hot sweats, but no fevers. He generally felt as if he had the flu. Friday was a tad better. I'm grateful for that. Saturday he went back to work. His biggest complaint was the lack of energy. I get it and understand.
Speaking of understanding. I get this. All of it, too much. The pain, the general feeling of crap, the tiredness, the fatigue and the loathing of everything while feeling all of these feelings. I personally, am doing okay. I'm struggling with watching him. Not because I'm selfish, but because I feel it. I remember these feelings all too well.
One week in, eleven more to go. Thank you for the prayers! xoxo
Sending Love and HOPE,
~Scar
Dose one is in. It's been a whirlwind of emotions, and that's just me. The Hubs is okay. Thursday was a rough day. He slept some Wednesday night. It was a good idea to take the meds when he got home from work, he was able to sleep through some of the side effects. Unfortunately when he woke Thursday, he was in for the bad. His fingers and toes were fat little sausages and his pain had become something fierce. He slept most of the morning. I was grateful for that because leading up to this, he wasn't sleeping. He tried getting up around noon. It didn't work. His pain was much too intense to try to focus. Speaking of focusing, yeah, no. It's funny how quickly you become clouded. He was. He had major cold and hot sweats, but no fevers. He generally felt as if he had the flu. Friday was a tad better. I'm grateful for that. Saturday he went back to work. His biggest complaint was the lack of energy. I get it and understand.
Speaking of understanding. I get this. All of it, too much. The pain, the general feeling of crap, the tiredness, the fatigue and the loathing of everything while feeling all of these feelings. I personally, am doing okay. I'm struggling with watching him. Not because I'm selfish, but because I feel it. I remember these feelings all too well.
One week in, eleven more to go. Thank you for the prayers! xoxo
Sending Love and HOPE,
~Scar
Monday, May 5, 2014
Chemo
Well Hello there. It's been a while. Hope you are all doing well. Here, we are dealing with some things. I have found I tend to introvert myself when things start going bad. It's been crazyhere lately. The Hubs is sick. Some of you may recall a few months back, he was seeing a doctor. I had posted that they were checking him for Psoriatic Arthritis. That particular doctor said he did not have it. It was likely he would develop it at some point in the future. At that time we went back to his Primary Care doctor and asked for some help. He had been in much pain. It was increasingly getting worse. About six weeks ago, his doctor said, "There's nothing more that I can do for you." I laughed at that, because they really didn't do a whole lot. Oh, wait. They made him feel as if it was all in his head. They put him on anxiety meds, which seemed to help a little. But that just fixed a symptom, it never got to the root of the problem.
When he came home from the doctor that day, I was livid. I live with this man, there's something wrong. His pain is real. You can't tell me when he's sleeping and kicking and thrashing around in bed, there's no pain. I picked up the phone called our insurance company and asked to see a doctor out of plan, for a second opinion. A week later we saw another doctor. We chose this doctor because he specializes in digging for answers. There's some fancy word to describe that, but I forget. :) He sat with us for over an hour. By the time we left, he was on a blood pressure med (which he needed, but no one ever addressed), he was scheduled to see a new Rheumatologist and he was to try a gluten free diet. They also took a multitude of blood tests to see if anything was abnormal there, including Lyme's and Thyroid, etc.
Fast forward to two weeks ago. It was time to see his new Rheumatologist. This one also listened to him for over an hour. He checked out almost every joint on his body. He measured his ability to breathe in and out. He measured the mobility of his spine. He also ran many blood tests. He viewed the past MRI films. We had an idea of what the doctor thought it was. But he wanted to see what the blood test showed before he confirmed it. Fast forward another week.
The Hubs has Psoriatic Arthritis and Ankylosing Spondylitis. Both are hard to treat and are not curable. The AS is arthritis in the spine. The doctor feels he's had this since sometime in his 20's and it has progressed to the point of his mobility is restricted. It's pretty bad. So this last Thursday when we saw him to get the diagnosis (for sure), we had to discuss treatment options. Well, it was more like a course of action.
This coming Thursday the Hubs will begin a chemo treatment to help alleviate his AS symptoms. It should also help alleviate the psoriatic arthritis. Every Thursday he will take a high dose of this chemo drug. The side effects are similar to any chemo drug. He will lose his hair, he will feel like he has the flu, with the nausea and vomiting and all over body pains, he will have joint pain, we have to watch his blood levels. I know I am missing side effects, but that's pretty much it. It's a chemo drug, and with a chemo drug, you have nasty side effects.
If this drug doesn't work, then he will have a stronger chemo drug delivered through an iv. This first round will last until August 1st. Then we will start the iv infusion, if needed.
So please, if you can, send some positive prayers /thoughts/ mojo our way. He is feeling pretty down about it. I think he has my chemo experience in mind, and it just makes him nervous. He also is the only one working, so he is stressed about missing work. Thanks guys for your prayers and understanding.
Until next time, Sending love and HOPE,
Scar
When he came home from the doctor that day, I was livid. I live with this man, there's something wrong. His pain is real. You can't tell me when he's sleeping and kicking and thrashing around in bed, there's no pain. I picked up the phone called our insurance company and asked to see a doctor out of plan, for a second opinion. A week later we saw another doctor. We chose this doctor because he specializes in digging for answers. There's some fancy word to describe that, but I forget. :) He sat with us for over an hour. By the time we left, he was on a blood pressure med (which he needed, but no one ever addressed), he was scheduled to see a new Rheumatologist and he was to try a gluten free diet. They also took a multitude of blood tests to see if anything was abnormal there, including Lyme's and Thyroid, etc.
Fast forward to two weeks ago. It was time to see his new Rheumatologist. This one also listened to him for over an hour. He checked out almost every joint on his body. He measured his ability to breathe in and out. He measured the mobility of his spine. He also ran many blood tests. He viewed the past MRI films. We had an idea of what the doctor thought it was. But he wanted to see what the blood test showed before he confirmed it. Fast forward another week.
The Hubs has Psoriatic Arthritis and Ankylosing Spondylitis. Both are hard to treat and are not curable. The AS is arthritis in the spine. The doctor feels he's had this since sometime in his 20's and it has progressed to the point of his mobility is restricted. It's pretty bad. So this last Thursday when we saw him to get the diagnosis (for sure), we had to discuss treatment options. Well, it was more like a course of action.
This coming Thursday the Hubs will begin a chemo treatment to help alleviate his AS symptoms. It should also help alleviate the psoriatic arthritis. Every Thursday he will take a high dose of this chemo drug. The side effects are similar to any chemo drug. He will lose his hair, he will feel like he has the flu, with the nausea and vomiting and all over body pains, he will have joint pain, we have to watch his blood levels. I know I am missing side effects, but that's pretty much it. It's a chemo drug, and with a chemo drug, you have nasty side effects.
If this drug doesn't work, then he will have a stronger chemo drug delivered through an iv. This first round will last until August 1st. Then we will start the iv infusion, if needed.
So please, if you can, send some positive prayers /thoughts/ mojo our way. He is feeling pretty down about it. I think he has my chemo experience in mind, and it just makes him nervous. He also is the only one working, so he is stressed about missing work. Thanks guys for your prayers and understanding.
Until next time, Sending love and HOPE,
Scar
Thursday, February 6, 2014
Honesty
Honesty right?...
Okay, here it is...
Cancer has taken so much from me. My security. My safety net. My humanness. My me. My soft side.
Not a day goes by that I don't fight against this stupid thing. But in that fight, I fail.
I am so mad at myself. My old me never would have let us (as a family) get here. We are not in a good place. We are stuck and the only way to go is up. However that up, for me is a giant climb.
My problem is this... The adjustment disorder. I know what I am now. I know what my heart desires. I know I need to move on and at least embrace this new me. However this new me wants to give up.
I have shed more tears in the last 48 hours than I care to admit. My emotions are running high. I am making rash decisions. Then taking them all back. I am on the verge. I am hanging on by a thread. I've said things to people that I wish I hadn't. I almost feel as if something is possessing me,other than my own mind.
I am overly opinionated right now.
Maybe some of these things are good. But in this manner they are not. They are just a bunch of emotions running so high I am going to explode. Let me take that back. I did that already. Tears. I've been wearing sunglasses non-stop for the last 24 hours. Except in the house. The crying is so uncontrolable I've put water-proof mascara on.
I feel like a failure. I was not raised to be this girl. I was never to be dependent on someone other than myself, and of course my God. My philosophy with God has been this... If I have the tools and the opportunity arises and I have prayed and been working toward a goal, I need to do what He is pushing me to do. It steered to school. It steered me to my marriage. Both of which have been hard, but have been wonderful, the same.
Now, after cancer. I have become helpless. I hurt every.damn.day. I'm sick more than I am okay. My world has truly been flipped upside down and the rug that was under me, gone. No traces of the past are there.
But inside my heart is aching. I am not a helpless person. I am letting myself down every day. I don't go to bed happy. I don't finish the things I start. So in the midst of all of my tears in the last few days...
I have found this...
The girl I was, that I am is still in there. She is broken. She is tired. She is weak. She is fragile. But she is there. So I am attempting to find the strength to get her back. She needs to be whole. It's in me to do this. I was born a fighter. The words, "knock 'em dead.", were said to me every morning, growing up.
So that is what needs to be done. I am going to put on my big girl panties and I am gonna smile and mean it. I am gonna dance and be free. I am going to fight hard to get ME back. No more adjustment disorder. Because she is in there and Lord knows I need her back more now than ever.
Love and RENEWED Hope, Scar
Okay, here it is...
Cancer has taken so much from me. My security. My safety net. My humanness. My me. My soft side.
Not a day goes by that I don't fight against this stupid thing. But in that fight, I fail.
I am so mad at myself. My old me never would have let us (as a family) get here. We are not in a good place. We are stuck and the only way to go is up. However that up, for me is a giant climb.
My problem is this... The adjustment disorder. I know what I am now. I know what my heart desires. I know I need to move on and at least embrace this new me. However this new me wants to give up.
I have shed more tears in the last 48 hours than I care to admit. My emotions are running high. I am making rash decisions. Then taking them all back. I am on the verge. I am hanging on by a thread. I've said things to people that I wish I hadn't. I almost feel as if something is possessing me,other than my own mind.
I am overly opinionated right now.
Maybe some of these things are good. But in this manner they are not. They are just a bunch of emotions running so high I am going to explode. Let me take that back. I did that already. Tears. I've been wearing sunglasses non-stop for the last 24 hours. Except in the house. The crying is so uncontrolable I've put water-proof mascara on.
I feel like a failure. I was not raised to be this girl. I was never to be dependent on someone other than myself, and of course my God. My philosophy with God has been this... If I have the tools and the opportunity arises and I have prayed and been working toward a goal, I need to do what He is pushing me to do. It steered to school. It steered me to my marriage. Both of which have been hard, but have been wonderful, the same.
Now, after cancer. I have become helpless. I hurt every.damn.day. I'm sick more than I am okay. My world has truly been flipped upside down and the rug that was under me, gone. No traces of the past are there.
But inside my heart is aching. I am not a helpless person. I am letting myself down every day. I don't go to bed happy. I don't finish the things I start. So in the midst of all of my tears in the last few days...
I have found this...
The girl I was, that I am is still in there. She is broken. She is tired. She is weak. She is fragile. But she is there. So I am attempting to find the strength to get her back. She needs to be whole. It's in me to do this. I was born a fighter. The words, "knock 'em dead.", were said to me every morning, growing up.
So that is what needs to be done. I am going to put on my big girl panties and I am gonna smile and mean it. I am gonna dance and be free. I am going to fight hard to get ME back. No more adjustment disorder. Because she is in there and Lord knows I need her back more now than ever.
Love and RENEWED Hope, Scar
Thursday, January 9, 2014
The Shower
I believe in Divine Intervention.
I always freak when I get a sign, then struggle when the signs are gone.
Here is a sign I received in the summer of 2005.
I was having a rough day with the kids. They were 1,3, and 5. I needed a break. The hubs was home. I asked him to take over. I just needed to lock myself in the shower and not come out.
Earlier that year, I found a lump in my right breast. I had ultrasounds, I had a prestigious Radiologist that I worked with talk me down from my freak out. Yes, there was a lump, but it wasn't cancerous.
My mom had breast cancer shortly after I was born, well I guess I was like three. But really that wasn't much after. I thought the same was happening to me.
So back to the shower. I had a talk, with God, My God. Please don't question my faith. It is the only thing that gets me through. Anyway, we had a talk. He told me I was going to have cancer.
I always assumed it was going to be breast cancer.
It wasn't it was pancreas cancer.
You know what scares me? He told me I'd fight for a really long time. I'd hold my head up and be strong. Strong for everyone. Strong for my family, friends, kids... Strong for me.
But I would lose in the end.
I know it sounds crazy. I pray all the time. I ask for his will. I'm afraid to ask to stay alive. What if it's not in His plans? What if my journey is that to make others believe? What if me dying saves one person. It will all be worth it, in my mind.
So as hard as it is to say this... I still believe He was preparing me. It might be 70 years from now, it may be next month. Whatever the length, I will continue to fight in His name for His purpose.
I always freak when I get a sign, then struggle when the signs are gone.
Here is a sign I received in the summer of 2005.
I was having a rough day with the kids. They were 1,3, and 5. I needed a break. The hubs was home. I asked him to take over. I just needed to lock myself in the shower and not come out.
Earlier that year, I found a lump in my right breast. I had ultrasounds, I had a prestigious Radiologist that I worked with talk me down from my freak out. Yes, there was a lump, but it wasn't cancerous.
My mom had breast cancer shortly after I was born, well I guess I was like three. But really that wasn't much after. I thought the same was happening to me.
So back to the shower. I had a talk, with God, My God. Please don't question my faith. It is the only thing that gets me through. Anyway, we had a talk. He told me I was going to have cancer.
I always assumed it was going to be breast cancer.
It wasn't it was pancreas cancer.
You know what scares me? He told me I'd fight for a really long time. I'd hold my head up and be strong. Strong for everyone. Strong for my family, friends, kids... Strong for me.
But I would lose in the end.
I know it sounds crazy. I pray all the time. I ask for his will. I'm afraid to ask to stay alive. What if it's not in His plans? What if my journey is that to make others believe? What if me dying saves one person. It will all be worth it, in my mind.
So as hard as it is to say this... I still believe He was preparing me. It might be 70 years from now, it may be next month. Whatever the length, I will continue to fight in His name for His purpose.
The Smile
She sits and stares
She wonders what has become of her life
Desperation
Desolation
Isolation
Loneliness
Aching
She dreams of a better life
Yet, when faced with being gone, she can't let it be
She knows it's going to happen
Slowly,
She is dying
It's growing
Darkness overtakes
But she keeps her head up
'
She walks
She struggles
She even manages to smile
But what is real
How will it end
When...
She wonders what has become of her life
Desperation
Desolation
Isolation
Loneliness
Aching
She dreams of a better life
Yet, when faced with being gone, she can't let it be
She knows it's going to happen
Slowly,
She is dying
It's growing
Darkness overtakes
But she keeps her head up
'
She walks
She struggles
She even manages to smile
But what is real
How will it end
When...
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