I guess I am managing
When I logged on this morning I noticed that a month had passed since I had last written anything.
A month. We have been home a month.
Since we have been home the time has flown by, and has been filled with ups and downs, and twists and turns. Honestly, I sometimes feel as if I am on a rollercoaster and am screaming for someone to stop the ride and let me off. They never do.
However, other times...?
Well, other times I feel almost normal.
*****
I have found that my biggest struggle since being home is managing Steven.
Yes. Managing.
Some people manage wealth, offices, farms, interests, etc.
Me? I "manage" my husband. Or, at least, I try to.
I am so very thankful that he feels well most of the time. Truly, I am. It was terrible seeing him sick and I hope to never see him in that shape again. Ever. It killed me. However, the down side of him feeling so well is the fact that he thinks he can do anything.
Steven is apparently suffering with memory loss resulting in poor decision making. (My tongue is in my cheek while typing that.) Knowing him, he would probably blame it on "chemo brain", but I have found that it selectively occurs.
A couple of weeks ago, when visiting his physician, Steven pressed Dr. Jacoby, questioning when he would get "the ok" to return to work. The physician stated that returning to work generally isn't even discussed until around day +180 (Steven is at day +96), and she specifically told him they would wait and reevaluate at that time. I am not even kidding when I tell you that as we walked out into the hallway, leaving his appointment, Steven turned to me and said, "Sounds like I can go back to work..." (Insert: palm to forehead.)
I, in no uncertain terms, assured him that he COULD NOT.
Last week, when having his labs drawn in Springfield, I for some reason was drawn to ask the tech what Steven's pulse/ox was. I have never been concerned about his level in the past, but, that day, I needed reassurance that it was alright. It was 92%. (In St. Louis they put him on oxygen at 92%.) I made a mental note and knew that I would be checking it again at home later that evening. That night, the level had fallen to 91%.
I knew that he was planning on taking a friend to the eye doctor, in Rogers, AR, the next day. The trip alone was not something that I was hip on, considering that we still, technically, were supposed to be living in St. Louis, close to the hospital due to instances such as these. In my mind, being five hours away from the facility probably wasn't the best idea. However, against my better judgment, and considering he had been feeling really well, I hadn't protested too much, knowing that I needed to choose my battles.
The evening before his planned excursion, when noticing the downward trend, I mentioned that he might want to call his friend and tell him that he should get another traveling partner, just in case something came up. Steven refused. The next morning when his oxygen was 87%, I was sick at the thought and told him that I would be calling the nurse. His reply? "I figured you would" as he headed out the door towards Arkansas. (Yeah. Another palm to forehead.)
As suspected, the physician in St. Louis WAS alarmed and wanted Steven to be immediately seen. I explained that he was hours away and that, at best, he might be in Springfield later that afternoon. She wasn't amused. After speaking with multiple nurses, a plan of action had been decided, and a trip to urgent care, where he would be escorted immediately to the back into an unused room, was on the agenda once he returned to the area.
In urgent care, after several tests, it was determined that he had two viral infections, both respiratory in nature, and also, a possible adverse reaction to a drug he was taking. The urgent care physician asked Steven several questions about his medicines, treatments and care, all of which Steven referred to me, because he simply didn't know the answers. (And yet another palm to forehead moment.)
The urgent care physician told Steven that St. Louis was leaning towards having him admitted...in St. Louis. My heart sank and, honestly, I didn't know if I could go through it all again. I felt so defeated.
I also felt completely aggravated with my husband.
Yes. My husband. The same one that has been sick. The same one that I have fought to protect. The same one that I have loved my whole life. The same one that destroys me at the thought of losing.
And, then, I felt guilty for being so aggravated with him.
"St. Louis" agreed to hold off admitting him pending the lab results. When speaking with the nurse the next day she told me that it was only because of me, and my attention to his condition, and regimen, that they would allow Steven to stay home. Although I was so relieved at the knowledge that we wouldn't be immediately be readmitted, I again felt the weight of the responsibility that seemed to always fall on my shoulders.
It was/is Steven's life. I still can't fathom why he hasn't taken control and taken the reigns of his care. My only thought is that he knows that I will. We both have been inundated time after time with doctors that tell us how dire, and serious, his situation is, and will be, until his immune system is back up and firing on all cylinders. I'm not sure what else it would take to get him to take it seriously. But then again, I wonder what he hears when they speak. Maybe his mind, in an effort to protect him, refuses to acknowledge where he is in his life right now.
He once told me, "When I see things on television about cancer, I never think that it applies to me. I refuse to."
And maybe, just maybe, that is the "mental medicine" that Steven has chosen to take.
*****
I am not writing this to paint Steven in an unflattering light. I love that hard headed man dearly and whole heartedly. Instead, I believe it is through these experiences that I have been given more insight into what it is to be a care giver. In the past, I have always thought about the fear, and sadness, they must have at the thought of possibly losing their loved ones. But what I didn't realize is the struggle, the battles, and the weariness of the battle. I never thought about the fact that you are not only a mom, dad, husband, wife, sister, brother, son or daughter...but you are a nurse 24/7, and on call at all times, and the toll that takes on everything you do.
The mental and physical fatigue weighs on you and those around you. Like others, I am trying to do what I know is best for Steven, taking the knowledge given to us by doctors and nurses who are well versed and experienced at dealing with this disease.
We, on the other hand, are not well versed. We are learning.
We have to trust in those who have gotten us this far: they've been there and they've done that.
As I sit here I can't help but draw the parallel between our situation, and God's relationship with us. How many times do we not do what we are told, by God, to do? He knows what is best for us. Always. He tells us with a gentle nudge, that sometimes grows more forceful. He also allows us to go against our better knowledge and find out for ourselves when our decisions aren't in our best interest.
He sees my frustrations. He sees my fears. He calls for me to be more understanding. He calls for me to trust in Him, the one that has gotten us this far.
And he "gets it". And me.
While at church a few weeks ago, a verse popped out at me: John 2:25
"He did not need any testimony about mankind, for he knew what was in each person."
While I think it is safe to say that God did know what was in each person because of the simple fact that he is, after all, God, and he made us, I think that as the priest pointed out, he also knew what was in each person because he too, walked this earth wearing very human clothes, human nature, and human temptations. Just because he didn't weaken, and fall to sin, doesn't mean he didn't look it in the eye.
He knew what was in them.
He knows what is in us.
Steven's stubbornness, my anxiety. Steven's determination, my weakness.
And, it's possible, while watching over us, that He still puts an occasional palm to His forehead and shakes his head.
*****
Please continue to pray for Steven and our family. His "100 day" bone marrow biopsy is tomorrow. I pray that the results show continued progress towards complete and total healing. I would appreciate if you would too.
Love to you all...
A month. We have been home a month.
Since we have been home the time has flown by, and has been filled with ups and downs, and twists and turns. Honestly, I sometimes feel as if I am on a rollercoaster and am screaming for someone to stop the ride and let me off. They never do.
However, other times...?
Well, other times I feel almost normal.
*****
I have found that my biggest struggle since being home is managing Steven.
Yes. Managing.
Some people manage wealth, offices, farms, interests, etc.
Me? I "manage" my husband. Or, at least, I try to.
I am so very thankful that he feels well most of the time. Truly, I am. It was terrible seeing him sick and I hope to never see him in that shape again. Ever. It killed me. However, the down side of him feeling so well is the fact that he thinks he can do anything.
Steven is apparently suffering with memory loss resulting in poor decision making. (My tongue is in my cheek while typing that.) Knowing him, he would probably blame it on "chemo brain", but I have found that it selectively occurs.
A couple of weeks ago, when visiting his physician, Steven pressed Dr. Jacoby, questioning when he would get "the ok" to return to work. The physician stated that returning to work generally isn't even discussed until around day +180 (Steven is at day +96), and she specifically told him they would wait and reevaluate at that time. I am not even kidding when I tell you that as we walked out into the hallway, leaving his appointment, Steven turned to me and said, "Sounds like I can go back to work..." (Insert: palm to forehead.)
I, in no uncertain terms, assured him that he COULD NOT.
Last week, when having his labs drawn in Springfield, I for some reason was drawn to ask the tech what Steven's pulse/ox was. I have never been concerned about his level in the past, but, that day, I needed reassurance that it was alright. It was 92%. (In St. Louis they put him on oxygen at 92%.) I made a mental note and knew that I would be checking it again at home later that evening. That night, the level had fallen to 91%.
I knew that he was planning on taking a friend to the eye doctor, in Rogers, AR, the next day. The trip alone was not something that I was hip on, considering that we still, technically, were supposed to be living in St. Louis, close to the hospital due to instances such as these. In my mind, being five hours away from the facility probably wasn't the best idea. However, against my better judgment, and considering he had been feeling really well, I hadn't protested too much, knowing that I needed to choose my battles.
The evening before his planned excursion, when noticing the downward trend, I mentioned that he might want to call his friend and tell him that he should get another traveling partner, just in case something came up. Steven refused. The next morning when his oxygen was 87%, I was sick at the thought and told him that I would be calling the nurse. His reply? "I figured you would" as he headed out the door towards Arkansas. (Yeah. Another palm to forehead.)
As suspected, the physician in St. Louis WAS alarmed and wanted Steven to be immediately seen. I explained that he was hours away and that, at best, he might be in Springfield later that afternoon. She wasn't amused. After speaking with multiple nurses, a plan of action had been decided, and a trip to urgent care, where he would be escorted immediately to the back into an unused room, was on the agenda once he returned to the area.
In urgent care, after several tests, it was determined that he had two viral infections, both respiratory in nature, and also, a possible adverse reaction to a drug he was taking. The urgent care physician asked Steven several questions about his medicines, treatments and care, all of which Steven referred to me, because he simply didn't know the answers. (And yet another palm to forehead moment.)
The urgent care physician told Steven that St. Louis was leaning towards having him admitted...in St. Louis. My heart sank and, honestly, I didn't know if I could go through it all again. I felt so defeated.
I also felt completely aggravated with my husband.
Yes. My husband. The same one that has been sick. The same one that I have fought to protect. The same one that I have loved my whole life. The same one that destroys me at the thought of losing.
And, then, I felt guilty for being so aggravated with him.
"St. Louis" agreed to hold off admitting him pending the lab results. When speaking with the nurse the next day she told me that it was only because of me, and my attention to his condition, and regimen, that they would allow Steven to stay home. Although I was so relieved at the knowledge that we wouldn't be immediately be readmitted, I again felt the weight of the responsibility that seemed to always fall on my shoulders.
It was/is Steven's life. I still can't fathom why he hasn't taken control and taken the reigns of his care. My only thought is that he knows that I will. We both have been inundated time after time with doctors that tell us how dire, and serious, his situation is, and will be, until his immune system is back up and firing on all cylinders. I'm not sure what else it would take to get him to take it seriously. But then again, I wonder what he hears when they speak. Maybe his mind, in an effort to protect him, refuses to acknowledge where he is in his life right now.
He once told me, "When I see things on television about cancer, I never think that it applies to me. I refuse to."
And maybe, just maybe, that is the "mental medicine" that Steven has chosen to take.
*****
I am not writing this to paint Steven in an unflattering light. I love that hard headed man dearly and whole heartedly. Instead, I believe it is through these experiences that I have been given more insight into what it is to be a care giver. In the past, I have always thought about the fear, and sadness, they must have at the thought of possibly losing their loved ones. But what I didn't realize is the struggle, the battles, and the weariness of the battle. I never thought about the fact that you are not only a mom, dad, husband, wife, sister, brother, son or daughter...but you are a nurse 24/7, and on call at all times, and the toll that takes on everything you do.
The mental and physical fatigue weighs on you and those around you. Like others, I am trying to do what I know is best for Steven, taking the knowledge given to us by doctors and nurses who are well versed and experienced at dealing with this disease.
We, on the other hand, are not well versed. We are learning.
We have to trust in those who have gotten us this far: they've been there and they've done that.
As I sit here I can't help but draw the parallel between our situation, and God's relationship with us. How many times do we not do what we are told, by God, to do? He knows what is best for us. Always. He tells us with a gentle nudge, that sometimes grows more forceful. He also allows us to go against our better knowledge and find out for ourselves when our decisions aren't in our best interest.
He sees my frustrations. He sees my fears. He calls for me to be more understanding. He calls for me to trust in Him, the one that has gotten us this far.
And he "gets it". And me.
While at church a few weeks ago, a verse popped out at me: John 2:25
"He did not need any testimony about mankind, for he knew what was in each person."
While I think it is safe to say that God did know what was in each person because of the simple fact that he is, after all, God, and he made us, I think that as the priest pointed out, he also knew what was in each person because he too, walked this earth wearing very human clothes, human nature, and human temptations. Just because he didn't weaken, and fall to sin, doesn't mean he didn't look it in the eye.
He knew what was in them.
He knows what is in us.
Steven's stubbornness, my anxiety. Steven's determination, my weakness.
And, it's possible, while watching over us, that He still puts an occasional palm to His forehead and shakes his head.
*****
Please continue to pray for Steven and our family. His "100 day" bone marrow biopsy is tomorrow. I pray that the results show continued progress towards complete and total healing. I would appreciate if you would too.
Love to you all...
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