Cholangiocarcinoma. The mouthful is what undermines my mother. I have access to wine and the Webs, so I can prattle on without coherence nor care. The past few hours I've looked at plane tickets to return to MN. My FMLA is almost up, and sometimes I wish I can dash the whole thing. Neither the $ or the job is an issue, but my return to work would allow my dad to quit his job and rest his body for a bit. His blood sugar levels have climbed steadily higher since my mother's illness, and soon I may be caring for another parent; however, all that will be for another blog, another time, and another date.
In the years before this moment of heartache, I knew that something to this effect would happen, and that I, as the only child, would need to take care of my parents. Of course, the chain of events are never as neatly compartmentalized or resolved as what one may think. Even during the most pessimistic cases, I never dreamed that the world would look like this. Back in college, I used to share my concerns with another only child, and we'd worry about our parents, as we fretted for our futures and the sacrifices that we would have to make. Yet, during this time with my parents, I have not become frustrated that my life has been uprooted and all routine remain unrecognizable. The greatest frustration is from the inability to do anything.
On this side of the glass, one can become inured to the daily struggles of my mother. I worry that I may be too numb at the end of this, and all I want right now is to smoke an entire pack of cigarettes despite not having had one during my entire stay.
I don't think I'll love anyone or any thing as much as my parents. In so many ways, the extent of their struggle in the United States are completely ineffable. One cannot capture the toil and cumulative effect of sacrifice in a blog, a post, a sentence. Shit, I've become maudlin. It's the wine, I swear. Somehow it's always night when I write.
Friday, February 27, 2009
collapse
What is hope? I’ll spare you the dictionary definition. Thank my laziness for the reprieve from the high school device of introducing a theme. No, there is no whimsical resolution at the end with some quote from Gandhi or Jesus or Martin Luther King, Jr. There is no query of what you should be doing for your country. This is to you, dear friend. What is hope? When does it become desperate?
The days seem to unfurl with no apparent difference from each moment to moment. My mother and I, we have become accustomed to the atrociously poor processes at LACUSC. When her PICC line became occluded, when her colon was perforated, when her stomach was obliterated…all these things were mere shit toppings on a craptastic sundae. I know, poor and lazy metaphor. What I’m saying is that these instances are the filigrees on a baroque catastrophe. (here’s a note: when you’re scared and worried that your mother is going to die, don’t look up the survival rates of biliary cancer…here’s a hint it starts with number 0 and ends with it…discuss).
Today my mother and I had a visit with the oncologist. This is standard procedure, to follow up with them every four weeks to assess whether there might be any complications, whether doses for medications need to be increased, whether things are supposed to go the way they should, given what the circumstances are. Though our appointment was for 8 a.m., we were able to meet the doctor by 8:45 a.m. This is spectacularly fast. The first matter was whether she was feeling okay. She was. The second matter was her jaundice. I may have mentioned the morbid thought of whether one can tell if an Asian person has jaundice. Turns out you can, and it’s pretty fucking easy to tell. Some weeks ago, my mother’s eyes have turned yellow, as has her skin, especially along her belly. In the sunlight, her eyes look like lemons, and I can’t turn away. She’s caught me staring and has asked why I was doing so. Of course, I tell her it’s because she’s pretty. Which is true in some sense, because I’ve been attempting to etch her face into my brain. I don’t want to forget, though I know time will ravage my memory of her, and I shall be left with a decayed relic. It is inevitable, and every picture will be a false sketch. She is not two dimensional, and she never was a 5x7.
As her liver enzymes have crept perilously upward, we’re facing the possibility of liver failure. She will be taken off of the chemo regimen, and Phase I alternatives will be the next step. The chemo doesn’t work. The cancer has spread further.
The days seem to unfurl with no apparent difference from each moment to moment. My mother and I, we have become accustomed to the atrociously poor processes at LACUSC. When her PICC line became occluded, when her colon was perforated, when her stomach was obliterated…all these things were mere shit toppings on a craptastic sundae. I know, poor and lazy metaphor. What I’m saying is that these instances are the filigrees on a baroque catastrophe. (here’s a note: when you’re scared and worried that your mother is going to die, don’t look up the survival rates of biliary cancer…here’s a hint it starts with number 0 and ends with it…discuss).
Today my mother and I had a visit with the oncologist. This is standard procedure, to follow up with them every four weeks to assess whether there might be any complications, whether doses for medications need to be increased, whether things are supposed to go the way they should, given what the circumstances are. Though our appointment was for 8 a.m., we were able to meet the doctor by 8:45 a.m. This is spectacularly fast. The first matter was whether she was feeling okay. She was. The second matter was her jaundice. I may have mentioned the morbid thought of whether one can tell if an Asian person has jaundice. Turns out you can, and it’s pretty fucking easy to tell. Some weeks ago, my mother’s eyes have turned yellow, as has her skin, especially along her belly. In the sunlight, her eyes look like lemons, and I can’t turn away. She’s caught me staring and has asked why I was doing so. Of course, I tell her it’s because she’s pretty. Which is true in some sense, because I’ve been attempting to etch her face into my brain. I don’t want to forget, though I know time will ravage my memory of her, and I shall be left with a decayed relic. It is inevitable, and every picture will be a false sketch. She is not two dimensional, and she never was a 5x7.
As her liver enzymes have crept perilously upward, we’re facing the possibility of liver failure. She will be taken off of the chemo regimen, and Phase I alternatives will be the next step. The chemo doesn’t work. The cancer has spread further.
Saturday, February 21, 2009
Excerpt
From Without by Donald Hall, Porcelain Couple:
He hovered beside Jane’s bed,
Solicitous: “What can I do?”
It must have been unbearable
While she suffered her private hurts
to see his worried face
looming above her, always anxious to do
something when there was
exactly nothing to do. Inside him,
some four-year-old
understood that if he was good – thoughtful,
considerate, beyond
reproach, perfect – she would not leave him.
Though about a husband and wife, the sense of futility is understandable. And the image of the young boy standing there in the hopes of being able to provide some assistance or comfort is particularly apt in my situation.
He hovered beside Jane’s bed,
Solicitous: “What can I do?”
It must have been unbearable
While she suffered her private hurts
to see his worried face
looming above her, always anxious to do
something when there was
exactly nothing to do. Inside him,
some four-year-old
understood that if he was good – thoughtful,
considerate, beyond
reproach, perfect – she would not leave him.
Though about a husband and wife, the sense of futility is understandable. And the image of the young boy standing there in the hopes of being able to provide some assistance or comfort is particularly apt in my situation.
Without
I intend to post snippets of Donald Hall’s Without on this blog, however this post is about something else. That is to say, this post is about how beguiling and frustrating this disease, which afflicts my mother, is nothing greater than the manifestation of a vindictive hell – one that is bound with the Old Testament ideas of retribution through denial or excess. My mother has neither eaten nor drank anything in several months. A tumor slowly grows in her biliary tract where it blocks off the passage of bile (ta-da). Moreover, her stomach becomes less pliable and coarser as the cancer continues to conquer her body. For sustenance, a nutritional bag keeps her alive and bags of saline are attached to her PICC line twice a day. Though nothing passes her lips, her brain delivers a message to the stomach as it attempts to digest a product that isn’t there. The slow build of bile and acid fills her stomach so that she begins to feel the sensation that a belt is tightening from within. There is no pain, per se, so the administration of narcotics is less an attempt to quell the pain but to eliminate consciousness. Here, have another.
This of course contributes to her weakness. She sits all day and refuses to lean or sleep on her left side where the PICC line is inserted in her upper left arm and follows the vein towards her heart. This, they tell me, is okay. Her hesitance stems from the time when the line was occluded, and we spent a day in the emergency room. As with all patients who are prone for far too long, she has begun to develop a pressure sore.
I say this disease is about absence or excess. There appears to be no moderation. She can’t drink but vomits bile steadily (by my count she averaged 18 times a day before we upped her anti-emetic). She doesn’t eat, but the administration of the TPN starts the digestive process, which causes her considerable discomfort. She can’t sleep but drowses constantly. She takes Reglan to encourage her digestive system to move, but the narcotics she receives to stop her pain slows the digestive tract. She has a son, but there is only one and he is ineffective.
This of course contributes to her weakness. She sits all day and refuses to lean or sleep on her left side where the PICC line is inserted in her upper left arm and follows the vein towards her heart. This, they tell me, is okay. Her hesitance stems from the time when the line was occluded, and we spent a day in the emergency room. As with all patients who are prone for far too long, she has begun to develop a pressure sore.
I say this disease is about absence or excess. There appears to be no moderation. She can’t drink but vomits bile steadily (by my count she averaged 18 times a day before we upped her anti-emetic). She doesn’t eat, but the administration of the TPN starts the digestive process, which causes her considerable discomfort. She can’t sleep but drowses constantly. She takes Reglan to encourage her digestive system to move, but the narcotics she receives to stop her pain slows the digestive tract. She has a son, but there is only one and he is ineffective.
Friday, February 20, 2009
Updates
There's little to say, in part because I've been attempting to do BGI work, which is poorly written and executed. I'm weighing my return to MN and skyping in to check in with my parents. I wish it were as simple as attempting to go with my head or heart, but life is rarely this simple. Both wiseacres and fortune cookies have told me this. They are both accurate. Though only one of them is deliciously sweet after a meal. I'll let you guess.
And there's this economic downturn, which is sort of like saying my mother has a health downturn, that has put fear in my parent's hearts, but for some reason I am nonplussed. This is either because I'm a market bear or I'm stupid. I'll let you guess.
But there are far more poignant or seemingly poignant things that i wsh to say, but I cannot address at this time because the library only allows for 2 hour parking. I'm working on getting Internets for my parents place.
Um, my mom is amazed with pasta makers, Cuisinarts, Jacques Pepin, and the Internet, among other things.
And there's this economic downturn, which is sort of like saying my mother has a health downturn, that has put fear in my parent's hearts, but for some reason I am nonplussed. This is either because I'm a market bear or I'm stupid. I'll let you guess.
But there are far more poignant or seemingly poignant things that i wsh to say, but I cannot address at this time because the library only allows for 2 hour parking. I'm working on getting Internets for my parents place.
Um, my mom is amazed with pasta makers, Cuisinarts, Jacques Pepin, and the Internet, among other things.
Tuesday, February 10, 2009
Timeless
We went into the emergency room again this past Thursday because my mother felt pain in her abdomen that wouldn't go away. In these instances I sometimes hear the persistent clacking of scissors, as Saramagao somehow puts it. He means death, but I first thought he meant murderous tailors. Anyway...
The funny (and I mean funny uh-oh) thing about the ER is that given the tremendous strain of limited resources faced by the county, the place is ill-equipped to handle the flood of people who come to use the service. Among the dozens there are some legitimate cases who need immediate assistance, but triage relies on the accurate relay of information from the incoming patient. In most cases, there are those who know that he or she won't receive immediate treatment without some indication that he or she is in some world of hurt. If one's symptoms warrant further review, one is ushered into another room where one waits until a bed becomes available, whereupon one waits to see the doctor. At every stage, one requires patience.
During our first visit to the ER in 2008, we waited over 24 hours. On subsequent visits, our wait has been reduced due to her condition and her apparent pain. The funny (this time ha-ha) thing with the ER waiting room is that there those who have become well-versed in what one needs to do before entering the inner sanctum. Once having gained entry into the waiting room, one knows that it may be hours before a bed is available to take one in. Even if one is placed in the STAT category, one may well expect to wait 16 hours as one poor woman had to endure. Though others simply take in a movie and dinner before arriving some hours later because they know that there is nothing but time to kill. Like anywhere else, there are regulars.
So, if you ever have to go to the emergency room with someone bring coins for phone calls if your mobile phone doesn't work, bring your mobile phone charger should your phone work, bring a newspaper and/or magazine, a sweater, some snacks, bottled water, and any other distraction. Even if you have a severed finger, it may take an hour or so.
The funny (and I mean funny uh-oh) thing about the ER is that given the tremendous strain of limited resources faced by the county, the place is ill-equipped to handle the flood of people who come to use the service. Among the dozens there are some legitimate cases who need immediate assistance, but triage relies on the accurate relay of information from the incoming patient. In most cases, there are those who know that he or she won't receive immediate treatment without some indication that he or she is in some world of hurt. If one's symptoms warrant further review, one is ushered into another room where one waits until a bed becomes available, whereupon one waits to see the doctor. At every stage, one requires patience.
During our first visit to the ER in 2008, we waited over 24 hours. On subsequent visits, our wait has been reduced due to her condition and her apparent pain. The funny (this time ha-ha) thing with the ER waiting room is that there those who have become well-versed in what one needs to do before entering the inner sanctum. Once having gained entry into the waiting room, one knows that it may be hours before a bed is available to take one in. Even if one is placed in the STAT category, one may well expect to wait 16 hours as one poor woman had to endure. Though others simply take in a movie and dinner before arriving some hours later because they know that there is nothing but time to kill. Like anywhere else, there are regulars.
So, if you ever have to go to the emergency room with someone bring coins for phone calls if your mobile phone doesn't work, bring your mobile phone charger should your phone work, bring a newspaper and/or magazine, a sweater, some snacks, bottled water, and any other distraction. Even if you have a severed finger, it may take an hour or so.
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