updates
First: she's alive. She's exhausted, but stable and alert.
Second: thank you. I don't have the depth of words to say how everyone's support--emotional, spiritual, moral, financial, and logistic--has been appreciated. The amount of light everyone has brought has pushed the dark back.
Third: I'm okay. Exhausted, and battered, and I so want to have some proper hysterics at some point in the future, but I'm okay.
Fourth: so... she has a major, huge, my god it's been there long enough to deform the bone around it aneurysm. It's a cavernous (left) carotid aneurysm. It could be far, far worse. Which isn't to say that it's good. But she'd been having major nosebleeding episodes combined with hypertensive crises, which is how they finally (and the fact that it took so damn long has me livid) found the aneurysm. However--and fortunately--the bleeding was in the anterior portion of her nose/nasal passages, and so was coincidental with the aneurysm and not related to it. When she was airlifted out, they did so because the local emergency department docs thought the bleeding was from the aneurysm--hence me flying back to California with the absolute terror of expecting my mom to be dead or dying.
But the bleeding has been taken care of (we hope, but it looks good), so the trouble now is that her hematocrit (the percentage of her blood that is red blood cells (as opposed to plasma)) is low. As in dangerously low. Currently, she's at 19% or so. The normal range should around 40% to 49%.
In the usual course of things, they would transfuse a patient like her with some whole blood to up her hematocrit. However, dear reader, you might recall that my mother belongs to a faith that explicitly prohibits transfusions. And let me tell you, the round robin tourney that was my siblings arguing and yelling and shouting past each other when we thought that she was going to need brain surgery right just then was not fun. Several people were told. By me. I made sure that my mother had her questions answered and she was able to clarify her position, and finally my brothers backed the hell down.
I completely understand their fears, but damn it--take them out elsewhere.
Currently, the plan is to continue her erythropoietin treatments to get her red marrow to produce new RBCs. It's going to take some weeks before her hematocrit is high enough for surgery. She's scheduled to remain at the hospital (Stanford; she's in great hands) until it goes up to 25%, at which point it's still low as heck, but she can go home. Then possibly the surgery later.
Of course, the aneurysm could pop at any time. They're like that, aneurysms.
But she's been living with it for a long time (given that it's remodeled the bone that it's sitting on). Odds are pretty good that it'll continue to be okay, for a while anyway. That's a continuing conversation.
Fifth: honestly, I'm as well as can be expected. My friends have been astonishingly amazing. People have stepped up. It's a blessing. I'm going to have to go back up to Portland soon (back up on Wednesday). I'm missing my first week of classes and lab, but my advisor said not to worry about it. I'm just trying to get the reading done, etc. I can't stop my program--beyond the fact that I'd have to postpone my studies an entire year (and I'm supposed to graduate in 15 months!), right now my student loans are my only source of income. If I'm not in school, I literally do not have money to pay rent or eat--and I've barely got enough for that. Granted, if I weren't in school, I could get full-time professional employment soon enough, but that doesn't address the whole issue of why I'd be doing so, and how those circumstances might change. And that wouldn't be taking me further on a path toward happiness.
I expect that I'll fly back down for the surgery and a few days after. But then I'll have to go back up for school. (It'll be midterms, probably. I'll have to arrange alternate test dates, etc.) There's not much that I can actually do here that others in my family can't do. And they'll have to. They all need to step up.
Is it odd that I find the fact that she's had this thing for ages to be a perverse kind of comfort? I mean, it's like finding out that there's a bomb in the house. But it's been there all along, and it's impossible to tell what kind timer it's got, or how much time might be on it--but all that time you were living your life, it was there.
So you might as well continue on, no?
At least, that's how it feels to me.
And, yes. I'm still terrified. But a lot less so. Every moment feels extra, special, lagniappe. I want my mom to live. I want those 20 years. I want health and laughter and arguments and love.
So, yeah... that's where we're at.
Second: thank you. I don't have the depth of words to say how everyone's support--emotional, spiritual, moral, financial, and logistic--has been appreciated. The amount of light everyone has brought has pushed the dark back.
Third: I'm okay. Exhausted, and battered, and I so want to have some proper hysterics at some point in the future, but I'm okay.
Fourth: so... she has a major, huge, my god it's been there long enough to deform the bone around it aneurysm. It's a cavernous (left) carotid aneurysm. It could be far, far worse. Which isn't to say that it's good. But she'd been having major nosebleeding episodes combined with hypertensive crises, which is how they finally (and the fact that it took so damn long has me livid) found the aneurysm. However--and fortunately--the bleeding was in the anterior portion of her nose/nasal passages, and so was coincidental with the aneurysm and not related to it. When she was airlifted out, they did so because the local emergency department docs thought the bleeding was from the aneurysm--hence me flying back to California with the absolute terror of expecting my mom to be dead or dying.
But the bleeding has been taken care of (we hope, but it looks good), so the trouble now is that her hematocrit (the percentage of her blood that is red blood cells (as opposed to plasma)) is low. As in dangerously low. Currently, she's at 19% or so. The normal range should around 40% to 49%.
In the usual course of things, they would transfuse a patient like her with some whole blood to up her hematocrit. However, dear reader, you might recall that my mother belongs to a faith that explicitly prohibits transfusions. And let me tell you, the round robin tourney that was my siblings arguing and yelling and shouting past each other when we thought that she was going to need brain surgery right just then was not fun. Several people were told. By me. I made sure that my mother had her questions answered and she was able to clarify her position, and finally my brothers backed the hell down.
I completely understand their fears, but damn it--take them out elsewhere.
Currently, the plan is to continue her erythropoietin treatments to get her red marrow to produce new RBCs. It's going to take some weeks before her hematocrit is high enough for surgery. She's scheduled to remain at the hospital (Stanford; she's in great hands) until it goes up to 25%, at which point it's still low as heck, but she can go home. Then possibly the surgery later.
Of course, the aneurysm could pop at any time. They're like that, aneurysms.
But she's been living with it for a long time (given that it's remodeled the bone that it's sitting on). Odds are pretty good that it'll continue to be okay, for a while anyway. That's a continuing conversation.
Fifth: honestly, I'm as well as can be expected. My friends have been astonishingly amazing. People have stepped up. It's a blessing. I'm going to have to go back up to Portland soon (back up on Wednesday). I'm missing my first week of classes and lab, but my advisor said not to worry about it. I'm just trying to get the reading done, etc. I can't stop my program--beyond the fact that I'd have to postpone my studies an entire year (and I'm supposed to graduate in 15 months!), right now my student loans are my only source of income. If I'm not in school, I literally do not have money to pay rent or eat--and I've barely got enough for that. Granted, if I weren't in school, I could get full-time professional employment soon enough, but that doesn't address the whole issue of why I'd be doing so, and how those circumstances might change. And that wouldn't be taking me further on a path toward happiness.
I expect that I'll fly back down for the surgery and a few days after. But then I'll have to go back up for school. (It'll be midterms, probably. I'll have to arrange alternate test dates, etc.) There's not much that I can actually do here that others in my family can't do. And they'll have to. They all need to step up.
Is it odd that I find the fact that she's had this thing for ages to be a perverse kind of comfort? I mean, it's like finding out that there's a bomb in the house. But it's been there all along, and it's impossible to tell what kind timer it's got, or how much time might be on it--but all that time you were living your life, it was there.
So you might as well continue on, no?
At least, that's how it feels to me.
And, yes. I'm still terrified. But a lot less so. Every moment feels extra, special, lagniappe. I want my mom to live. I want those 20 years. I want health and laughter and arguments and love.
So, yeah... that's where we're at.