Saturday morning started off with cold rains and strong winds and meant that something would go wrong for sure; it’s always the cold, rainy days that require you to leave your warm comfy home.
My mom had spent most of the night telling my stepfather that she was going to die before her doctor ever started his experimental therapy and that nightmarish thought carried into her morning too. Dana called me late in the morning and told me that my mom was upset and wanted to return to the hospital because she believed she was dying. I started getting myself ready to go and talk to my mom when the next call came through. An ambulance had been called because my mom had had some difficulty breathing. Everyone was called and we girls met up again in another emergency room while Dan rode with my mom in the ambulance. Upon arrival at the emergency department Dan informed me that during the ambulance ride the paramedic’s knee gave out and he fell across my mom’s chest. Later a bruise could be seen down the left side of her chest and she complained of soreness in the area, just another minor setback.
The sign on the front door of the emergency department says “We Care About Your Health.” Aria Health Systems of Bucks County cares so much about your health that they ask for your driver’s license and insurance card before the ever ask you what brought you to the emergency department. The ER doctor at least knew what PML was so I can’t complain too much, but she did ask me several times if I was sure I wanted my mom to be resuscitated if it came to that. I do understand the outcome for PML patients is not promising, but I believe I should have everything possible done to keep my mother alive until she can receive treatment. We can revisit this issue after that depending on the success of the T cell therapy.
My mom’s airway was cleared and she checked out okay on a chest x-ray and EKG so after receiving a bag of IV fluids we were okay to take her home. I ran out through the pouring rain to start my car and get it warm enough for my mom. As I sat there with the heat blasting and listening to the rain my sister Kelly came out the double doors of the hospital and ran to the car and flung herself into my passenger seat. Before I had the chance to ask her what was wrong she whipped a hospital bed pan out of her coat. “This one is contoured better and is more comfortable than the one we have at home,” she said smiling. Now, I know you what you are all thinking, we could have just asked for that bedpan, right? In all honesty, they probably would have just given us one, but they could have said no and we just can’t take risks like that! I smiled at Kelly, threw the bed pan into the back seat and pulled the car around to the ambulance pick up to wait for my mom to be brought out.
The doctor explained that my mom’s numbers looked good and that she was not really all that dehydrated so I figure we aren’t doing as bad a job as we thought. However, the event did teach me that regardless of the outcome of my mom’s condition the emotional scars will be permanent for Dana, Kelly, Chris and I. As we left the ER the attending physician gave us her condolences and said “It is what it is, right?”
“Not quite, jackass. We still hope, because we call her mom.”
The level of frustration that comes with a life limiting illness is amazing. I feel as if my entire life is on hold just waiting for the next episode or event that takes me to the edge of my sanity. I want to lash out at someone, hurt them and make them feel this helpless and lost. Not a single moment goes by where I don’t worry about the regret that will come if I choose to spend my day wrong and “what if” is the beginning of every thought—what if I go to work and something happens, what if I spend time with the kids and something happens, what if I actually have a conversation with my husband and something happens, what if I sit with my mom and something happens, what if I make sure my sisters are dealing and something happens. Some days I feel like I just can’t be bothered with other peoples’ feelings and it takes so much effort to pull myself out of that place where misery reigns supreme. There are just too many sharp turns, jarring stops, and dark tunnels on this roller coaster and I just want to get off back there at “happily ever after.” Of course, beyond all there is always hope, just like when Pandora opened her box, unleashing terrible horrors on mankind, she managed to close the box before hopelessness was released. So, that is basically where we are today, holding down the lid on hopelessness.
Tomorrow will be our first visit from the home care nurse and then Monday is my mom’s appointment with Dr Schuster to discuss our game plan. Let’s play ball!
My mom had spent most of the night telling my stepfather that she was going to die before her doctor ever started his experimental therapy and that nightmarish thought carried into her morning too. Dana called me late in the morning and told me that my mom was upset and wanted to return to the hospital because she believed she was dying. I started getting myself ready to go and talk to my mom when the next call came through. An ambulance had been called because my mom had had some difficulty breathing. Everyone was called and we girls met up again in another emergency room while Dan rode with my mom in the ambulance. Upon arrival at the emergency department Dan informed me that during the ambulance ride the paramedic’s knee gave out and he fell across my mom’s chest. Later a bruise could be seen down the left side of her chest and she complained of soreness in the area, just another minor setback.
The sign on the front door of the emergency department says “We Care About Your Health.” Aria Health Systems of Bucks County cares so much about your health that they ask for your driver’s license and insurance card before the ever ask you what brought you to the emergency department. The ER doctor at least knew what PML was so I can’t complain too much, but she did ask me several times if I was sure I wanted my mom to be resuscitated if it came to that. I do understand the outcome for PML patients is not promising, but I believe I should have everything possible done to keep my mother alive until she can receive treatment. We can revisit this issue after that depending on the success of the T cell therapy.
My mom’s airway was cleared and she checked out okay on a chest x-ray and EKG so after receiving a bag of IV fluids we were okay to take her home. I ran out through the pouring rain to start my car and get it warm enough for my mom. As I sat there with the heat blasting and listening to the rain my sister Kelly came out the double doors of the hospital and ran to the car and flung herself into my passenger seat. Before I had the chance to ask her what was wrong she whipped a hospital bed pan out of her coat. “This one is contoured better and is more comfortable than the one we have at home,” she said smiling. Now, I know you what you are all thinking, we could have just asked for that bedpan, right? In all honesty, they probably would have just given us one, but they could have said no and we just can’t take risks like that! I smiled at Kelly, threw the bed pan into the back seat and pulled the car around to the ambulance pick up to wait for my mom to be brought out.
The doctor explained that my mom’s numbers looked good and that she was not really all that dehydrated so I figure we aren’t doing as bad a job as we thought. However, the event did teach me that regardless of the outcome of my mom’s condition the emotional scars will be permanent for Dana, Kelly, Chris and I. As we left the ER the attending physician gave us her condolences and said “It is what it is, right?”
“Not quite, jackass. We still hope, because we call her mom.”
The level of frustration that comes with a life limiting illness is amazing. I feel as if my entire life is on hold just waiting for the next episode or event that takes me to the edge of my sanity. I want to lash out at someone, hurt them and make them feel this helpless and lost. Not a single moment goes by where I don’t worry about the regret that will come if I choose to spend my day wrong and “what if” is the beginning of every thought—what if I go to work and something happens, what if I spend time with the kids and something happens, what if I actually have a conversation with my husband and something happens, what if I sit with my mom and something happens, what if I make sure my sisters are dealing and something happens. Some days I feel like I just can’t be bothered with other peoples’ feelings and it takes so much effort to pull myself out of that place where misery reigns supreme. There are just too many sharp turns, jarring stops, and dark tunnels on this roller coaster and I just want to get off back there at “happily ever after.” Of course, beyond all there is always hope, just like when Pandora opened her box, unleashing terrible horrors on mankind, she managed to close the box before hopelessness was released. So, that is basically where we are today, holding down the lid on hopelessness.
Tomorrow will be our first visit from the home care nurse and then Monday is my mom’s appointment with Dr Schuster to discuss our game plan. Let’s play ball!
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