November 30, 2011: Woke up a little late. Kind of nice to be allowed to sleep in. What I didn't know is why I was allowed to sleep in. Rolled out of bed and looked down the hallway, waving at my husband before slipping in to the bathroom. Took my time in there, slowly waking up and enjoying the quiet. Came out of the bathroom and asked my husband where my coffee was. I didn't really get much of a response out of him, except for "I don't feel so good". So I asked him what was wrong. He merely pointed at his phone and said "I can't do it". That was strange. Since when can he not use his iPhone. It's a permanent attachment to his hand! He just kept telling me that he had a headache and was seeing lights. So I'm thinking migraine. No biggie! He had several of them in the past month, so it was nothing new. But what concerned me was that he couldn't get his words out. He wasn't making any sense. I knew right away what was happening. He was having a stroke. So I asked him to look at me and smile. No facial paralysis. But he still couldn't communicate very well.
So, you might say, "Take him to the hospital!!" Well, I thought about that, but we didn't have any insurance. This was gonna be real expensive, especially if it's just a migraine. But the longer I heard him and watched him, the more I knew this was serious. So I told him that, if we had insurance, I would have called an ambulance by now. That was the clincher. Time to go.
The following is a collection of my facebook posts from day 1 until I got too tired to keep track anymore.
'Okay, so it's been a long day. Marc is resting, I'm supposed to be getting some sleep. I don't think that's gonna happen. The diagnosis is not a pretty one. A dissected carotid artery. Completely blocked with a blood clot. Evidently the inside of your blood vessel has layers "like a tortilla". Evidently one of the layers tore away, forming a flap that caused blood to stop flowing to the brain, causing a clot, causing a mild stroke. Thank GOD it was only a MILD stroke. The good part is, two other people stroked out on the same morning so the hospital ER was full of Neurologists! So Marc was seen immediately upon arrival. Other than a bad headache and confusion ( he still doesn't know what month it is or how old he is) and he forgets what happened and keeps asking. But he sure feels LOVED! Thank you for all the prayers and the calls and texts. He is not completely out of danger, but he is is GOD'S hands. And I'd rather be in GOD's hand any day!'
Day 2: The day started with Marc looking pretty tired and weak. His head hurt, but he was better than yesterday. After noon he got pain meds which knocked him out! He slept about 3 hours and woke up feeling great. His words were flowing freely like there was nothing wrong. His visit with Pastor Tim was wonderful and he loved it! After dinner, though, his headache returned and with that great confusion. To the point where he was unable to make even a simple sentence. Hard to see him be this way, and I know it's frustrating to him to not be able to communicate. So the lesson for today was: Marc needs to rest. So I'm hoping tonight he gets LOTS of good sleep so his brain can heal.
Day 3: started out okay. Wonderful visitors, sponge bath, walking unassisted. However, lunchtime proved to be a little challenging. Evidently when Marc sat on the edge of the bed his heart rate increased to compensate, setting off alarms. Soon after my precious husband was unable to communicate with us. It was frightening for all of us. Long story short, no further damage, but looks like a small piece of the clot broke off. Causing the disruption in his ability to speak. But it was only temporary, thank god! Please continue to pray that the clot would dissolve and that the artery would heal. Thank you for your kind words and prayers.
Day 4: Marc is doing much better today. They are moving him out of icu tomorrow. Still no word as to what they are going to do with the large clot. Hoping to hear something.
Day 4 part 2: just when I thought it was safe to sleep the hospital called. Please pray for Marc as he just had another piece of the clot break off causing problems again.
(needless to say, they did not move him out of ICU)
During this time I was too insane to post anything. The doctor came in Sunday morning and told us that they were gonna send him home because there was nothing more they could do for him there. Are you frickin' kidding me? My daughter, who was with me, said "That's NOT gonna work!!" I asked the doctor what I should do if he had another stroke when he got home. He said....don't bring him back in because there is nothing we can do. The feeling I experienced and the visuals going through my head were NOT cool.
Dec 7th: As I sit by Marc's bedside holding his hand while he sleeps he wakes up and catches me crying. He says to me ,"I'm not done yet. It's not time for me to go". It does all come down to whose report will we believe. The doctors report tonight was not a pleasant one but she was honest and frank, which I appreciated. I am thankful for faith-filled friends and family that believe for me when I am weakened by a long day. Love you all. Pray for my children.
Day 8: there has been an improvement in Marc's condition. His speech has improved and the nurses and doctors have been able to stabilize his blood pressure. Other than a slight headache and being really tired he is having very few symptoms. He is not allowed to get out of bed. So 8 days in bed is taking it's toll on his tolerance level. He wants to get up and get moving but that's not gonna happen for a while. They don't even let him sit on the edge of the bed and dangle his legs as his blood pressure drops too much. BUT, it is definitely better than a few days ago. Healing is taking place!!!
Day 11: Marc is still in ICU. He slept off and on for the last 2 days thanks to the combination of drugs he is on. The docs are trying to get the right combination and levels that ensures blood flow to the left half of his brain. FYI: 10 days on Dopamine is bad. His heart rate and BP were not liking it. So he is down to thinners and meds to keep him going. He had an "event" last night that knocked out his speech. It's called "expressive aphasia" (look it up) and it's frustrating for him because he can't tell you what's happening or how he feels. He has SO much to say and can't find the words he wants. The doc came in and answered lots of questions for us. (Hardest answer: Yes, he will have a major event at some time. No, we can't do anything about it) SO, we need a miracle. 99% of patients can benefit from all the procedures and drugs that help. Marc is the 1% that nothing can help. GOD specializes in 1% cases. So, we put him in the hands of the Master Physician and we wait.
Day something or other: Marc has been taken off all IV drugs as an experiment to see if his body/blood pressure will self adjust. Despite a few events (speech, facial, hand, arm, leg numbness, which did subside) his body has maintained a satisfactory blood pressure. IF he can keep it in a high enough range he MIGHT get to go to a regular room by Monday or Tuesday. Woo-hoo. But, he is having withdrawals now with severe headaches that they are treating, so it's looking up from the bottom right now. My biggest concern, and his, is the events that he is having that are a little un-nerving, to say the least. Frustrated and scared seems to be the mood. Yet, we continue to hope in God.
He came home a few days later.
Sunday, April 22, 2012
Saturday, April 21, 2012
Upheaval
My heart aches today as I reflect on life and death. I'm tired of this thing called cancer. It has taken my mother, my father and is in the process of taking a much loved cousin.
My first recollection of cancer was a man in our church. I remember he had a gray look to him. And everyone was always praying and believing that he would be healed. He wasn't. I've only known one person to be healed from cancer. He used alternative medicine and it worked. But his cancer was caught early. So it was much easier to cure. In the case of my mother and cousin, the cancer was there for years before it was detected by the doctors. I blame the doctors. I blame them for not doing the right tests. For not listening and not believing the complaints of vague pain. I blame them for all of it.
My feelings on death have always been considered harsh and cold. I believe "Life goes on. Get over it" You can't stop death. It's a fact of life. So why should I spend years grieving? They are gone. Okay. Life goes on and I have things to do. Life does not stop so we can grieve and heal. We have to get up and keep going whether we like it or not.
I think I adopted that attitude after my mother died. Life went on. My father moved on with his life so quickly (a little too quickly) and re-married 12 weeks later. I was crushed by that. All I could think of was "you didn't love mom, if you had, you would not do this". To me, it was the ultimate disrespect! I was disgusted and sickened by the whole idea of him being with a younger woman. I hated him for that. And I hated his new wife. She came in and tried to be a mother to me. HA! Like I was just going to forget my mother and start calling her mom? NEVER in a million years, and still not to this day. When my father died she remarried within 9 weeks. WTH?!
Don't people have any sense of respect and decency? Have they no regard for the dead?
Okay. I realise they are gone and the spouse is legally free to remarry. But really, 12 weeks? After 32 years of marriage, did that mean nothing?
On the other hand......
My brother-in-law died a week before Christmas 25 years ago. His birthday was the day after mine. So my frustration was that every christmas and every birthday my husband was depressed because of the memory of his dead brother. Call me selfish, but I would get angry because there was no celebration of christmas or my birthday! What about loving the ones that are living?? Life goes on! Get over it!
So...on the 31st anniversary of my mothers death, I spent the majority of the day crying. I miss her. I thought it was supposed to get easier over time. But it seems like the older I get the more I miss her. I'm sure it's because I have another family member dying of the same thing that has brought all these feelings to the surface.
Or maybe life moved on too fast, and I didn't give myself time to grieve and heal.
My first recollection of cancer was a man in our church. I remember he had a gray look to him. And everyone was always praying and believing that he would be healed. He wasn't. I've only known one person to be healed from cancer. He used alternative medicine and it worked. But his cancer was caught early. So it was much easier to cure. In the case of my mother and cousin, the cancer was there for years before it was detected by the doctors. I blame the doctors. I blame them for not doing the right tests. For not listening and not believing the complaints of vague pain. I blame them for all of it.
My feelings on death have always been considered harsh and cold. I believe "Life goes on. Get over it" You can't stop death. It's a fact of life. So why should I spend years grieving? They are gone. Okay. Life goes on and I have things to do. Life does not stop so we can grieve and heal. We have to get up and keep going whether we like it or not.
I think I adopted that attitude after my mother died. Life went on. My father moved on with his life so quickly (a little too quickly) and re-married 12 weeks later. I was crushed by that. All I could think of was "you didn't love mom, if you had, you would not do this". To me, it was the ultimate disrespect! I was disgusted and sickened by the whole idea of him being with a younger woman. I hated him for that. And I hated his new wife. She came in and tried to be a mother to me. HA! Like I was just going to forget my mother and start calling her mom? NEVER in a million years, and still not to this day. When my father died she remarried within 9 weeks. WTH?!
Don't people have any sense of respect and decency? Have they no regard for the dead?
Okay. I realise they are gone and the spouse is legally free to remarry. But really, 12 weeks? After 32 years of marriage, did that mean nothing?
On the other hand......
My brother-in-law died a week before Christmas 25 years ago. His birthday was the day after mine. So my frustration was that every christmas and every birthday my husband was depressed because of the memory of his dead brother. Call me selfish, but I would get angry because there was no celebration of christmas or my birthday! What about loving the ones that are living?? Life goes on! Get over it!
So...on the 31st anniversary of my mothers death, I spent the majority of the day crying. I miss her. I thought it was supposed to get easier over time. But it seems like the older I get the more I miss her. I'm sure it's because I have another family member dying of the same thing that has brought all these feelings to the surface.
Or maybe life moved on too fast, and I didn't give myself time to grieve and heal.
Too short
Sleep is not something that comes easy these days. It seems that as soon as I lay my head on my pillow, my mind starts racing wildly. I get some of the best ideas at night, in the dark. Unfortunately, by morning they are gone.
But there is one thing that seems to never leave my thoughts. How short life is.
Being a caregiver (AKA wife) to my husband has been a real interesting ride. Not one I would have ever chosen. But one that has been chosen for me. Not a day goes by when we are not faced with some "issue". We call them episodes. As if they were part of some long TV series and, everyday, we get to see a little bit more. And it just continues to unfold, bringing surprises and let-downs. These episodes are virtually the same every day. Wake up with a headache, sometimes mild, other times quite painful. That's how we determine if it's gonna be a good day or not. The oxygen is supposed to be helping to aleviate the headaches. And it does, if he keeps it on.
We had a discussion one day that went like this.
Him: "What's more important? Blood flow to the brain or oxygen?"
Me: "Both"
Him: "But without blood flow I would die."
Me: "True. But without oxygen in the blood, you will die."
Him: "But if theres no blood flow to carry the oxygen then it's useless."
Me: "You're right." (since his blood flow is severely restricted on the left half of his brain, the right half is trying to compensate. It's not doing such a good job.)
After much discussion back and forth, we came to the conclusion that both are equally important. So keep the oxygen ON!!
This morning was no different. No headache, but I forgot to mention the dizziness and the blood pressure drops. So, when he stands up, or leans forward, or bends over, or walks, he has dizziness. Everyones' blood pressure changes when you stand up, but when you don't have blood flow to the brain already, then it's a bit intensified. The dizziness is quickly followed by the feeling of blacking out. So, its like "hang on to the nearest thing" or sit back down. Oh, and then there are the seizures. And the "ping" headaches (the sensation that someone just smashed the side of his head with a hammer followed by dizziness). And the exhaustion. And the confusion. And the speech issues. And the memory loss. (last night we watched a movie that we love, but for him it was the first time all over again.) And the impulsive behavior. The list goes on. Everyday is different, yet the same. Everyday is a blessing and a curse. Everyday is too short.
I live with the knowledge that, at any time, he could be gone. Every night I am faced with the reality that he might not wake up, or he might wake up and not be able to communicate or be paralyzed. So, every night I think about whether I would have any regrets about that day. I try to make sure that there is nothing left unsaid. We talk often about our fears and our hopes. We don't deny them or try to hide them behind the facade of being strong. Matter of fact, we don't even pretend that we are strong. But yet, we do not dwell on them either. We acknowledge them and then we live the day the best we can.
It's hard to watch the person you love the most be in a seemingly hopeless situation; to watch the deterioration happen right before your eyes. But....God gives us strength and comfort every day. He gives us hope.
Someone once said, "Do your loving while they're living." I totally agree. Live your life so there are no regrets. Say your "I love you"s. Say the "I'm sorry"s. Appreciate every little thing they do. Because you never know what today or tomorrow holds.
But there is one thing that seems to never leave my thoughts. How short life is.
Being a caregiver (AKA wife) to my husband has been a real interesting ride. Not one I would have ever chosen. But one that has been chosen for me. Not a day goes by when we are not faced with some "issue". We call them episodes. As if they were part of some long TV series and, everyday, we get to see a little bit more. And it just continues to unfold, bringing surprises and let-downs. These episodes are virtually the same every day. Wake up with a headache, sometimes mild, other times quite painful. That's how we determine if it's gonna be a good day or not. The oxygen is supposed to be helping to aleviate the headaches. And it does, if he keeps it on.
We had a discussion one day that went like this.
Him: "What's more important? Blood flow to the brain or oxygen?"
Me: "Both"
Him: "But without blood flow I would die."
Me: "True. But without oxygen in the blood, you will die."
Him: "But if theres no blood flow to carry the oxygen then it's useless."
Me: "You're right." (since his blood flow is severely restricted on the left half of his brain, the right half is trying to compensate. It's not doing such a good job.)
After much discussion back and forth, we came to the conclusion that both are equally important. So keep the oxygen ON!!
This morning was no different. No headache, but I forgot to mention the dizziness and the blood pressure drops. So, when he stands up, or leans forward, or bends over, or walks, he has dizziness. Everyones' blood pressure changes when you stand up, but when you don't have blood flow to the brain already, then it's a bit intensified. The dizziness is quickly followed by the feeling of blacking out. So, its like "hang on to the nearest thing" or sit back down. Oh, and then there are the seizures. And the "ping" headaches (the sensation that someone just smashed the side of his head with a hammer followed by dizziness). And the exhaustion. And the confusion. And the speech issues. And the memory loss. (last night we watched a movie that we love, but for him it was the first time all over again.) And the impulsive behavior. The list goes on. Everyday is different, yet the same. Everyday is a blessing and a curse. Everyday is too short.
I live with the knowledge that, at any time, he could be gone. Every night I am faced with the reality that he might not wake up, or he might wake up and not be able to communicate or be paralyzed. So, every night I think about whether I would have any regrets about that day. I try to make sure that there is nothing left unsaid. We talk often about our fears and our hopes. We don't deny them or try to hide them behind the facade of being strong. Matter of fact, we don't even pretend that we are strong. But yet, we do not dwell on them either. We acknowledge them and then we live the day the best we can.
It's hard to watch the person you love the most be in a seemingly hopeless situation; to watch the deterioration happen right before your eyes. But....God gives us strength and comfort every day. He gives us hope.
Someone once said, "Do your loving while they're living." I totally agree. Live your life so there are no regrets. Say your "I love you"s. Say the "I'm sorry"s. Appreciate every little thing they do. Because you never know what today or tomorrow holds.
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