So much has changed in just the four days since I last updated this blog.
Karen has not had anything more than a few bites of food and a few sips of water since last Tuesday the 13th--for all intents and purposes she has stopped eating and drinking. She joined us for dinner (albeit she barely ate a thing) on Wednesday the 13th and since then she has not left her bed except to use the bathroom just a couple of times.
It all feels very End of Days. As I write this Karen is deeply asleep at around 12:30 PM after a kinda hellish night and I honestly don't know if she will wake and be able to interact with us ever again. We're just waiting to see. In a couple of hours she will be due for meds again and that usually stirs her from her slumber. I'm clearly no expert, but I'd guess there's a 50/50 chance she'll just keep sleeping right till the end.
Karen's pain has been an infuriatingly moving target. We have struggled to keep it at bay. Her dosages and dosage frequencies keep getting increased. With every increase we enjoy a day or two of substantial pain relief invariably followed by another day or so of waves of agony throughout her body, i.e. the pain is no longer localized in one or two spots like her head.
Part of the struggle has been getting her into a physically comfortable position. We have tried to maintain as normal a life as possible but last Thursday we had hospice deliver a hospital bed so that we can better find a posture that relieves her of pain and discomfort. Here's a big hearty THANK YOU to my videogaming career and the peerless Tetris skills it nurtured and developed which allowed me to reconfigure the bedroom just enough to allow her bed to fit next to mine.
And let me just share an aside as to how awful it is after 26 years of living together to refer to that sprawling, suddenly far too empty king bed as "mine" for the first time ever.
Most of the time Karen is sound asleep, her face slack and sagging in a way that I have never seen before. She trembles and jumps and jolts from a constant barrage of neurological misfires that at times are strong enough to briefly jar her awake. She almost immediately drifts off again, her brow furrowed with some unknowable worry. Her skin is dry and her arms are sleeved in delicate wrinkles like crepe paper. When she is awake, she generally is incapable of carrying on a conversation about much of anything unless it is to ask for pain meds. The pain is the only thing that reliably cuts through the fog these days.
But it's not limited just to physical pain. And that's not necessarily a bad thing.
Last night, Miranda and I were in my room with Karen and she was, as per the last few days, lost in the drugs and the ravages of her disease. She spoke but instead of truly talking she was only muttering "yeah" and "okay" over and over. It was too much for Miranda and she began to cry. I sat beside her and embraced her while she clutched her mother's hand. Through her tears, Miranda told Karen how much she loved her, how she knew she had always enjoyed her mother's unconditional support, and how much she was going to miss her. This was her goodbye (I'd said mine the night before). That cut through the fog like a knife and suddenly Karen was back. Her hands trembling and uncertain, Karen held Miranda's hand with one of her own and clumsily stroked her daughter's arm with the other. "I'm so sorry you have to go through this," she said more than once. It was the most she had spoken in 24 hours. She was, for about 85 seconds, completely present for her daughter. Then she slipped away again. My throat ached for about 20 minutes after thanks to how painfully choked up I was through all this.
Around 5AM Karen woke me to use the toilet. She was agitated and stressed but actually pretty communicative. Since she was up and it was roughly time, I gave her all her meds including her new big dose of methadone. I had to add the jumbo dose of dilaudid to that shortly after in an effort to dull the pain. One hours later she woke me in torment begging for more drugs. I checked with hospice and while they wanted me to wait until 7AM to give her another (but still early) dose of dilaudid I figured "Fuck it, it's close enough and she's in agony" and gave her another big syringe full of dilaudid. That did the trick and she slipped back into sleep.
She's been out cold since then. Her breathing is irregular and kind of shallow. From my very limited experience with this sort of thing--and I'd again like to remind you that I'm no expert so I could be way off on this--I imagine we are within days of the end of this nightmare. Which probably means we are within days of the start of a whole new nightmare.
Saturday, October 17, 2015
Tuesday, October 13, 2015
The Goodbye Girl
Just two weeks ago Karen and I spent the better part of a late afternoon going through the hospice intake process with the intake rep. The three of us sat at the dining room table and Karen shuffled in to join us under her own power and did all of her own talking.
Things, as they say, have changed.
After a couple of mildly terrifying falls (including one in the bathroom where Karen eventually crawled out from the room in order to use our landline to call my cell so I'd come and help her) Karen made her peace with using the walker. That lasted a handful of days and now (after some more scary falls) we have transitioned to using the wheelchair to get her around the house since she no longer has the strength to support herself with the walker. She cannot rise from a sitting position and relies on me to lift her up. If she wants to sit up in bed, I have to cradle her in my arms and move her into position.
She has become so weak she cannot sit down with any control and has to be gently lowered into place. Her growing inability to manage on her own continues to cruelly strip away her independence and has reduced her to relying on me simply to go to the bathroom. I lift her up from our bed and she clutches me as best she can, hands trembling and fingers fluttering erratically on my shoulder obeying the orders of the leptomenigeal-powered misfires in her brain. We negotiate the admittedly awkward and tight passage to our bathroom through a protracted series of tentative, mincing steps that are remarkably akin to that of a toddler just learning to walk. When we reach the bathroom, I set her down, leave the room, and wait for her to call me to retrieve her and return her to bed. A journey that had taken two seconds and maybe five steps at best now requires minutes and dozens of footsteps to complete, provided, of course, she can make it all the way back and doesn't need me to muscle her the last few feet of the way.
Cognitively, she is doing pretty well. There are still stretches where she really cannot maintain a discussion but those instances are primarily the result of the increased dosages of pain meds she is taking. On days where she doesn't need a few buckets of opiods, she is fairly engaged in conversation although she tires quickly. Her fatigue and the nature of her disease do continue to chip away at this however, and even the best conversations involve a generously sized sort of Mad Libs component where you have to guess at words or ideas she can't quite find. When the drugs take over, however, a deep fog settles in, one that is almost impossible to penetrate. In these instances, we nod and smile and agree with whatever she says.
These last two weeks have been defined by a tremendous amount of farewells. Karen's entire family has, one at a time, trekked out here to visit one last time and to say goodbye and my own parents have just left after a few days here. All of our visits have been brief in order to accommodate a couple of off days in between so Karen can recover some strength. We have filled the gaps between visits with calls to old friends--her long-ago roommate from her days in Tucson before we reconnected, long time friends from our time in New York--sharing memories with them before ending the calls with heartfelt goodbyes and declarations of love.
To keep the good times rolling, Karen had her last rites performed just last Sunday. The reverend from her church and some parishioners with whom she is close came over to participate. While the ritual certainly has an unexpected upbeat element, it was hard to see it as much more than just another, more formalized sort of goodbye.
Yesterday was Miranda's 21st birthday so we did our usual family thing, with me making dinner based on Miranda's requests (meatloaf) and cake and presents after. There was laughter, some champagne toasting, and merriment all around. Karen was pretty heavily medicated due to the falls the day before so she was relatively quiet and instead seemed quite content to simply observe, her head pivoting like a tennis fan's as she gazed back and forth and back again with every utterance. Somewhere in there, the fog lifted and she tearily leaned over to me and said "I love you so much." That felt a lot like my goodbye.
Later, after my parents left, Karen had another sliver of cake and asked to be wheeled into the living room so she could watch us play Rock Band 4. The three of us fired up the Xbox and dove right in. Karen was situated just behind us and I'd glance back whenever I could. Half of the time she was lost in the fog but when she wasn't she was smiling and nodding along with the music, dreamily chewing her dessert. But then I'd turn back to follow the music and she'd be, in a way, gone and we'd just have to take it on faith that her support was still there behind us while we played on.
Things, as they say, have changed.
After a couple of mildly terrifying falls (including one in the bathroom where Karen eventually crawled out from the room in order to use our landline to call my cell so I'd come and help her) Karen made her peace with using the walker. That lasted a handful of days and now (after some more scary falls) we have transitioned to using the wheelchair to get her around the house since she no longer has the strength to support herself with the walker. She cannot rise from a sitting position and relies on me to lift her up. If she wants to sit up in bed, I have to cradle her in my arms and move her into position.
She has become so weak she cannot sit down with any control and has to be gently lowered into place. Her growing inability to manage on her own continues to cruelly strip away her independence and has reduced her to relying on me simply to go to the bathroom. I lift her up from our bed and she clutches me as best she can, hands trembling and fingers fluttering erratically on my shoulder obeying the orders of the leptomenigeal-powered misfires in her brain. We negotiate the admittedly awkward and tight passage to our bathroom through a protracted series of tentative, mincing steps that are remarkably akin to that of a toddler just learning to walk. When we reach the bathroom, I set her down, leave the room, and wait for her to call me to retrieve her and return her to bed. A journey that had taken two seconds and maybe five steps at best now requires minutes and dozens of footsteps to complete, provided, of course, she can make it all the way back and doesn't need me to muscle her the last few feet of the way.
Cognitively, she is doing pretty well. There are still stretches where she really cannot maintain a discussion but those instances are primarily the result of the increased dosages of pain meds she is taking. On days where she doesn't need a few buckets of opiods, she is fairly engaged in conversation although she tires quickly. Her fatigue and the nature of her disease do continue to chip away at this however, and even the best conversations involve a generously sized sort of Mad Libs component where you have to guess at words or ideas she can't quite find. When the drugs take over, however, a deep fog settles in, one that is almost impossible to penetrate. In these instances, we nod and smile and agree with whatever she says.
These last two weeks have been defined by a tremendous amount of farewells. Karen's entire family has, one at a time, trekked out here to visit one last time and to say goodbye and my own parents have just left after a few days here. All of our visits have been brief in order to accommodate a couple of off days in between so Karen can recover some strength. We have filled the gaps between visits with calls to old friends--her long-ago roommate from her days in Tucson before we reconnected, long time friends from our time in New York--sharing memories with them before ending the calls with heartfelt goodbyes and declarations of love.
To keep the good times rolling, Karen had her last rites performed just last Sunday. The reverend from her church and some parishioners with whom she is close came over to participate. While the ritual certainly has an unexpected upbeat element, it was hard to see it as much more than just another, more formalized sort of goodbye.
Yesterday was Miranda's 21st birthday so we did our usual family thing, with me making dinner based on Miranda's requests (meatloaf) and cake and presents after. There was laughter, some champagne toasting, and merriment all around. Karen was pretty heavily medicated due to the falls the day before so she was relatively quiet and instead seemed quite content to simply observe, her head pivoting like a tennis fan's as she gazed back and forth and back again with every utterance. Somewhere in there, the fog lifted and she tearily leaned over to me and said "I love you so much." That felt a lot like my goodbye.
Later, after my parents left, Karen had another sliver of cake and asked to be wheeled into the living room so she could watch us play Rock Band 4. The three of us fired up the Xbox and dove right in. Karen was situated just behind us and I'd glance back whenever I could. Half of the time she was lost in the fog but when she wasn't she was smiling and nodding along with the music, dreamily chewing her dessert. But then I'd turn back to follow the music and she'd be, in a way, gone and we'd just have to take it on faith that her support was still there behind us while we played on.
Wednesday, October 7, 2015
Slow Fade
We're a week into hospice and it's been both a godsend and a nightmare. Without question, the relief Karen is getting from hospice care is a huge godsend. And most everything else connected with Karen's condition is a doggedly persistent nightmare. So....hooray?
We got the hospice process started last Monday and by Wednesday all our equipment (wheelchair, hospital bed table, nebulizer, etc.) was delivered along with a beefy supply of heavy duty painkillers and the like. With treatment no longer our goal, Karen was immediately relieved of the vast majority of the pill-taking that has dominated her life since she was diagnosed three years ago. Since most of the pills were vitamins and assorted drugs to offset chemo and various side effects, the absence of ongoing treatment renders them moot and thus we have removed them from her daily care routine. Not choking down more than a dozen pills a day is a huge boon. In their stead: a sizable dose of methadone, dilaudid for her "breakout" pain, dexamethasone to prevent swelling in her brain, and a laxative regimen that tastes ironically of ass to offset the probable constipation all these opiods could cause. But all these drugs are in liquid form which makes them much easier to take.
The losses are starting to pile up. Just before we started hospice care Karen was out with her sister, Liz, who was visiting to say her goodbyes. They stopped to get some frozen yogurt and while getting out of the car Karen's legs totally failed her. It was as if they weren't even there. So she fell, purposely lurching backward so she could control the fall better by sliding down the side of the vehicle. That was the day that Karen came to terms with the fact that she really needs a wheelchair to get around in public going forward. And it generated a Cronenberg sized dose of body horror to the whole situation, with Karen fearfully crying on my shoulder that night about her body's steady betrayal.
But I don't anticipate a whole lot of public outings in the future. Not just because the best lifespan estimate we are getting right now is mere "weeks" but because she's just not up to it. I know that there have been lots of blog posts that have mentioned how much time she spends in bed every day, but apparently there is always room for more. But not much at this point. She is in bed constantly. And that's another loss, one fueled in no small part by the drugs she is on, drugs which have been ratcheted up since yesterday's exceptionally ugly morning. After waking, Karen's usual drug cocktail couldn't get her pain under control and we had to call in hospice. The end result: a beefy increase to her thrice daily methadone doses as well as a big jump in dosage and frequency for the dilaudid (as needed). The good news is that her pain has subsided. The bad news is that the meds make her sleep and when she isn't sleeping she's very easily confused and can struggle to maintain a conversation.
That intellectual dimming or whatever caught up with Miranda the other night right after dinner. After another conversation with her mother got hopelessly tangled and lost, she broke down in tears in my bedroom as we talked. "It's like she's already gone," she sobbed. And I couldn't really argue against it--the truth is that Karen's once sharp mind is significantly dulled, blunted by drugs and three grueling years of cancer and chemo.
That said, I did tell Miranda that her mother is definitively still here and that she should take advantage of it while she still can. True, I said, she's being cruelly whittled away but try to look at it differently. Instead of seeing her vanish, think of her as being distilled, that the stripping away of everything else that defines/defined her leaves us with the essence of who she is: a woman that radiates with love whenever she lays eyes on her kids or this sorry typist. It's probably just the steroids and methadone, but, man alive, when she looks at us these days she positively glows.
But we don't know how much longer she'll be doing that. As mentioned previously, our best estimate right now is "weeks" and, frankly, I'm not so sure about that. The view from here is that she's declining but not terribly rapidly. But when she can talk about it, Karen confides that she feels "my systems shutting down" internally and that she thinks the end will come quickly. I'm inclined to defer to her perspective on that.
Symptom-wise, she's coping with a metric shit ton of things. Her hands flutter and tremble constantly, like she's trying to corral a pair of restless birds. She has difficulty swallowing. Her hands are numb and her left leg is, too. She zones out mid-conversation. Sleeping, her breathing is shallow and irregular and we've thought she's died about a million times due to long pauses between breaths. And there's the recurring pain (which we can control), the recurring nausea (which we can control), and the crushing sense of time running out (about which we can do nothing).
Personally speaking, I'm not having a great time. Caring for Karen is an unexpected, perverse joy, probably because it's the one thing that allows me the illusion of having some degree of agency in all this. I am still blindsided by glimpses of future loss: I read about a new fantasy novel series that Karen would love but there's no point in recommending it to her now since she hasn't the energy to read and never will again. In small ways the disease has already forced us to start living without her; for instance, I was struck the other night as we cleaned up after dinner that Karen was no longer part of the process since it was so hard for her to pitch in. So she's gone from that little sliver of our life. And so many others.
It's terrifically painful and the only person I truly want to talk to about it isn't really available. This disease can be tremendously isolating and this is the most at sea I've felt so far.
Finally, please allow me to quickly (and somewhat ashamedly) plug our Meal Train thing to donate meals to our family. Eating is just about the last thing on our minds these days and Meal Train has been a tremendous help in keeping us fed while making dinner a blessedly worry-free event. If you're moved to help us out in any way, you could do a lot worse than clicking on this here Meal Train link and volunteering for a day to either bring food or have it delivered. We will repay you in pie someday.
We got the hospice process started last Monday and by Wednesday all our equipment (wheelchair, hospital bed table, nebulizer, etc.) was delivered along with a beefy supply of heavy duty painkillers and the like. With treatment no longer our goal, Karen was immediately relieved of the vast majority of the pill-taking that has dominated her life since she was diagnosed three years ago. Since most of the pills were vitamins and assorted drugs to offset chemo and various side effects, the absence of ongoing treatment renders them moot and thus we have removed them from her daily care routine. Not choking down more than a dozen pills a day is a huge boon. In their stead: a sizable dose of methadone, dilaudid for her "breakout" pain, dexamethasone to prevent swelling in her brain, and a laxative regimen that tastes ironically of ass to offset the probable constipation all these opiods could cause. But all these drugs are in liquid form which makes them much easier to take.
The losses are starting to pile up. Just before we started hospice care Karen was out with her sister, Liz, who was visiting to say her goodbyes. They stopped to get some frozen yogurt and while getting out of the car Karen's legs totally failed her. It was as if they weren't even there. So she fell, purposely lurching backward so she could control the fall better by sliding down the side of the vehicle. That was the day that Karen came to terms with the fact that she really needs a wheelchair to get around in public going forward. And it generated a Cronenberg sized dose of body horror to the whole situation, with Karen fearfully crying on my shoulder that night about her body's steady betrayal.
But I don't anticipate a whole lot of public outings in the future. Not just because the best lifespan estimate we are getting right now is mere "weeks" but because she's just not up to it. I know that there have been lots of blog posts that have mentioned how much time she spends in bed every day, but apparently there is always room for more. But not much at this point. She is in bed constantly. And that's another loss, one fueled in no small part by the drugs she is on, drugs which have been ratcheted up since yesterday's exceptionally ugly morning. After waking, Karen's usual drug cocktail couldn't get her pain under control and we had to call in hospice. The end result: a beefy increase to her thrice daily methadone doses as well as a big jump in dosage and frequency for the dilaudid (as needed). The good news is that her pain has subsided. The bad news is that the meds make her sleep and when she isn't sleeping she's very easily confused and can struggle to maintain a conversation.
That intellectual dimming or whatever caught up with Miranda the other night right after dinner. After another conversation with her mother got hopelessly tangled and lost, she broke down in tears in my bedroom as we talked. "It's like she's already gone," she sobbed. And I couldn't really argue against it--the truth is that Karen's once sharp mind is significantly dulled, blunted by drugs and three grueling years of cancer and chemo.
That said, I did tell Miranda that her mother is definitively still here and that she should take advantage of it while she still can. True, I said, she's being cruelly whittled away but try to look at it differently. Instead of seeing her vanish, think of her as being distilled, that the stripping away of everything else that defines/defined her leaves us with the essence of who she is: a woman that radiates with love whenever she lays eyes on her kids or this sorry typist. It's probably just the steroids and methadone, but, man alive, when she looks at us these days she positively glows.
But we don't know how much longer she'll be doing that. As mentioned previously, our best estimate right now is "weeks" and, frankly, I'm not so sure about that. The view from here is that she's declining but not terribly rapidly. But when she can talk about it, Karen confides that she feels "my systems shutting down" internally and that she thinks the end will come quickly. I'm inclined to defer to her perspective on that.
Symptom-wise, she's coping with a metric shit ton of things. Her hands flutter and tremble constantly, like she's trying to corral a pair of restless birds. She has difficulty swallowing. Her hands are numb and her left leg is, too. She zones out mid-conversation. Sleeping, her breathing is shallow and irregular and we've thought she's died about a million times due to long pauses between breaths. And there's the recurring pain (which we can control), the recurring nausea (which we can control), and the crushing sense of time running out (about which we can do nothing).
Personally speaking, I'm not having a great time. Caring for Karen is an unexpected, perverse joy, probably because it's the one thing that allows me the illusion of having some degree of agency in all this. I am still blindsided by glimpses of future loss: I read about a new fantasy novel series that Karen would love but there's no point in recommending it to her now since she hasn't the energy to read and never will again. In small ways the disease has already forced us to start living without her; for instance, I was struck the other night as we cleaned up after dinner that Karen was no longer part of the process since it was so hard for her to pitch in. So she's gone from that little sliver of our life. And so many others.
It's terrifically painful and the only person I truly want to talk to about it isn't really available. This disease can be tremendously isolating and this is the most at sea I've felt so far.
Finally, please allow me to quickly (and somewhat ashamedly) plug our Meal Train thing to donate meals to our family. Eating is just about the last thing on our minds these days and Meal Train has been a tremendous help in keeping us fed while making dinner a blessedly worry-free event. If you're moved to help us out in any way, you could do a lot worse than clicking on this here Meal Train link and volunteering for a day to either bring food or have it delivered. We will repay you in pie someday.
Monday, September 28, 2015
An Artless Update
To give you an idea of the state of things here at Chez Coffey, the original title for this posting was "Holy Shit, Am I Tired." But since that simultaneously both begins and ends the conversation and there's more to tell, I've opted for an equally direct title that presents me with the opportunity to cough up a series of random facts and whatevers.
But...holy shit, am I tired. So please forgive me if what follows is more disjointed than usual.
About that tiredness. No matter how much I sleep (and it's not all that much these days) or how well (and sleep is rarely sound) I am dragging my sorry ass through every day. Miranda and Dash have also been struggling to get adequate rest, with all of us slumbering fitfully and for shorter periods than we did before Karen's countdown clock began ticking so loudly. Karen, on the other hand, probably has a shot at the Sleeping Olympics should such a thing exist. She's logging somewhere between 12 to 14 hours a night and supplementing that with frequent and lengthy naps over the course of the day.
Despite all the sleep she is getting, Karen is utterly sapped for the majority of every day. It is shocking how quickly she has declined in the last week. The fatigue is the most obvious manifestation of her disease's progression--she is in the grip of crushing fatigue daily and it slaps you in the face with every unsteady shuffling stroll she makes from bedroom to kitchen and back again. Most of her day is spent in bed, with Karen rising chiefly to eat meals and to spend some small amount of time with us every evening.
There are indications of the leptomeningeal disease doing its dirty work beyond just the tiredness. Karen has trouble hearing, especially if there is background noise or a radio muddying up the audio environment. And most nights, during our increasingly more brief evening discussions, she'll ask if I hear some far off music or tone. I never do but I have to say, given the opportunity to select end-of-days symptoms to endure I think you could do a lot worse than ticking the box next to Randomly Experience Lovely Music.
If only that distant music were all she had to endure. Karen has begun drinking using both her hands to clutch her water glass since her hands tend to be numb and she now has trouble holding on to things. Her left foot has begun alternating between numb and achy and something in between, making her already troubled walking even more uncertain. She struggles for words at times and her short-term memory is spotty. And this morning the fallout from the whole brain radiation hit and most of her hair fell out in the shower. I cleaned big clumps of it from the drain before hosing myself off.
She and I both are experiencing recurring waves of delightful free-floating anxiety. We both are adept at recognizing it and white-knuckling our way through but it sure does make something like watching Fear the Walking Dead way more tense than it probably is--all that anxiety seizes on the lurking zombie uncertainty of that show and pumps up the dread to about three hundred times more than it could generate on its own.
I am now essentially on leave from work. While Karen and I initially entertained the thought that I could squeeze in just one more project before checking out to care for her, her deterioration has been breathtaking in terms of its acceleration. We had told my job that we thought I could make this last thing work but our reasoning was predicated on the old model of adapting to the new terrible normal that every new round of treatment introduced. But this time around, that new normal lasts for just a day, replaced the following morning with a newer, more terrible one. At this point, I don't feel comfortable leaving the house for more than the hour it takes for me to hit Crossfit. A multiple day work trip is clearly out of the question.
Right now, the biggest challenge we face is wrapping up all the paperwork. Karen and I had been very proactive getting things ready for the shift to hospice but we didn't count on having to contend with all sorts of insurance complications and other problems that have popped up in the aftermath of her dismissal from Wells Fargo. We hadn't anticipated that Karen's anchor leg and all it entailed would coincide with this bureaucratic clusterfuck. My days have been filled with notaries, long excruciating phone calls, a crazy assortment of byzantine forms, and all kinds of follow-up to make sure that the Karen and our family make it through these next several weeks (and beyond) without having to survive a series of financial neutron bombs on top of it.
It is, to be blunt, a terrible grind. Happily, the Meal Train we set up has been a godsend. Not having to worry about shopping for and preparing dinner every night is a huge relief to me...and to the family, which was getting pretty tired of my half-assed meal efforts propped up by too frequent takeout from too few restaurants. There is actual variety in our diet again and we look forward to seeing what is on our menu every evening--it is truly a highlight if indeed not the highlight of every day. Actually, that's not true: seeing the people bringing the food is the unquestioned highlight of our days. (And if all this has made piqued your curiosity you can check out our Meal Train right here).
This afternoon I began the hospice intake procedure. Tomorrow a nurse will visit to determine our needs. Once we get the official sign-off from Dr. Sherman on Friday, we will officially commence hospice and then the end will be a whole lot nigh-er than it's ever been. While we are surprised by how quickly things are progressing, we are also grateful. No one wants a drawn-out, torturous end. And it isn't looking like it's going to go that way. We'd cheer about that if we weren't all so terribly sad.
But...holy shit, am I tired. So please forgive me if what follows is more disjointed than usual.
About that tiredness. No matter how much I sleep (and it's not all that much these days) or how well (and sleep is rarely sound) I am dragging my sorry ass through every day. Miranda and Dash have also been struggling to get adequate rest, with all of us slumbering fitfully and for shorter periods than we did before Karen's countdown clock began ticking so loudly. Karen, on the other hand, probably has a shot at the Sleeping Olympics should such a thing exist. She's logging somewhere between 12 to 14 hours a night and supplementing that with frequent and lengthy naps over the course of the day.
Despite all the sleep she is getting, Karen is utterly sapped for the majority of every day. It is shocking how quickly she has declined in the last week. The fatigue is the most obvious manifestation of her disease's progression--she is in the grip of crushing fatigue daily and it slaps you in the face with every unsteady shuffling stroll she makes from bedroom to kitchen and back again. Most of her day is spent in bed, with Karen rising chiefly to eat meals and to spend some small amount of time with us every evening.
There are indications of the leptomeningeal disease doing its dirty work beyond just the tiredness. Karen has trouble hearing, especially if there is background noise or a radio muddying up the audio environment. And most nights, during our increasingly more brief evening discussions, she'll ask if I hear some far off music or tone. I never do but I have to say, given the opportunity to select end-of-days symptoms to endure I think you could do a lot worse than ticking the box next to Randomly Experience Lovely Music.
If only that distant music were all she had to endure. Karen has begun drinking using both her hands to clutch her water glass since her hands tend to be numb and she now has trouble holding on to things. Her left foot has begun alternating between numb and achy and something in between, making her already troubled walking even more uncertain. She struggles for words at times and her short-term memory is spotty. And this morning the fallout from the whole brain radiation hit and most of her hair fell out in the shower. I cleaned big clumps of it from the drain before hosing myself off.
She and I both are experiencing recurring waves of delightful free-floating anxiety. We both are adept at recognizing it and white-knuckling our way through but it sure does make something like watching Fear the Walking Dead way more tense than it probably is--all that anxiety seizes on the lurking zombie uncertainty of that show and pumps up the dread to about three hundred times more than it could generate on its own.
I am now essentially on leave from work. While Karen and I initially entertained the thought that I could squeeze in just one more project before checking out to care for her, her deterioration has been breathtaking in terms of its acceleration. We had told my job that we thought I could make this last thing work but our reasoning was predicated on the old model of adapting to the new terrible normal that every new round of treatment introduced. But this time around, that new normal lasts for just a day, replaced the following morning with a newer, more terrible one. At this point, I don't feel comfortable leaving the house for more than the hour it takes for me to hit Crossfit. A multiple day work trip is clearly out of the question.
Right now, the biggest challenge we face is wrapping up all the paperwork. Karen and I had been very proactive getting things ready for the shift to hospice but we didn't count on having to contend with all sorts of insurance complications and other problems that have popped up in the aftermath of her dismissal from Wells Fargo. We hadn't anticipated that Karen's anchor leg and all it entailed would coincide with this bureaucratic clusterfuck. My days have been filled with notaries, long excruciating phone calls, a crazy assortment of byzantine forms, and all kinds of follow-up to make sure that the Karen and our family make it through these next several weeks (and beyond) without having to survive a series of financial neutron bombs on top of it.
It is, to be blunt, a terrible grind. Happily, the Meal Train we set up has been a godsend. Not having to worry about shopping for and preparing dinner every night is a huge relief to me...and to the family, which was getting pretty tired of my half-assed meal efforts propped up by too frequent takeout from too few restaurants. There is actual variety in our diet again and we look forward to seeing what is on our menu every evening--it is truly a highlight if indeed not the highlight of every day. Actually, that's not true: seeing the people bringing the food is the unquestioned highlight of our days. (And if all this has made piqued your curiosity you can check out our Meal Train right here).
This afternoon I began the hospice intake procedure. Tomorrow a nurse will visit to determine our needs. Once we get the official sign-off from Dr. Sherman on Friday, we will officially commence hospice and then the end will be a whole lot nigh-er than it's ever been. While we are surprised by how quickly things are progressing, we are also grateful. No one wants a drawn-out, torturous end. And it isn't looking like it's going to go that way. We'd cheer about that if we weren't all so terribly sad.
Saturday, September 19, 2015
Einstein Strikes Back!
A little over a week into our new countdown clock existence and both everything and nothing has changed. In practical terms, our days are nearly identical to what they were prior to all this business: doctor appointments, medication schedules, pain management, and so on. But there have been changes, mostly incremental but they all speak to the stark new landscape we are now negotiating.We met with both of our main doctors last week, Dr. Sherman and Dr. Moini, and Karen let them know that she was done with treatment. They both accepted and understood this in the most unremarkable way possible. While I had feared that Sherman would push back forcefully against Karen's decision to try to grab the least objectionable demise she could given her new diagnosis, he was fully supportive. The ease with which he--and Moini and all the chemo nurses and, frankly, our family members--accepted Karen's acceptance of this journey's imminent end spoke volumes about how dire the situation has become and how appropriate this choice is in light of it. As gun-shy as I was about possibly having to defend Karen's decision, there was a hope in the back of my mind that Sherman or someone would stop it, that there was something more to do, something that wouldn't, well, hurt.
But that didn't happen. Rather, all of our medical personnel not only accepted our transition to an end game posture, they talked about it as a good thing. They, like Karen, focused on what is to be gained: a handful of weeks spent with her kids, her dogs, her n'er-do-well spouse, and whatever family could make the trip out over the next few weeks. Every one of them spoke of this as if it were an excellent outcome. And it probably is, all things considered, but it is challenging to be as upbeat about it as they were.
As for the aforementioned changes, the bulk of them are subtle though a handful (I had to rent a wheelchair last week because Karen doesn't have the strength to walk more than a few dozen steps at a time) are a smidge more in your face. More often than not, the inevitable conclusion of our cancer cruise finds subtle new ways to insinuate itself into our lives--three years in and we still get blindsided in fresh and unexpected ways. For instance, the other day I was trying to clear some space on our jam-packed DVR and there was a pile of Masters of Sex episodes (basically, the entire current season) gobbling up a meaty slab of storage space. This has been a show we always get around to, not something we watch right away, i.e. it's no Game of Thrones. My deliberations about what to do with the lot was jarred by a wholly unexpected criterion that slipped in sideways: all things considered, there was no way we were going to watch these. Ever. My stomach knotted and my eyes watered with the realization. And then I deleted the lot of them so I wouldn't have to look at them and think about it again.
But there are some. The first thing we lost to cancer was Einstein on the Beach, a four and a half hour minimalist opera without an intermission that that is just as challenging to see as it sounds. Three years ago, prior to Karen's diagnosis, I got us tickets and we were both incredibly excited to see it. But then Karen developed the "pneumonia" that we would find out in a month was cancer and, long story short, she couldn't make it and I went alone. Denied the opportunity to share and discuss it with her, it was almost as if it didn't happen.
Miranda has turned that around. With no DVDs or anything available in North America, Miranda (unbidden and on her own volition) somehow contacted Philip Glass' agent and, another long story short, wound up corresponding with a French director who had been working on a documentary of the production. He burned her a copy and they arrived mid-week. So fuck you, cancer, we're taking that one back.We watched the first of the three discs already.
It is glorious.
Saturday, September 5, 2015
The Long Goodbye
Let's start with a confession: I kinda lied in that last post.
The truth is that the whole "Karen is at 60%" assertion was based on numbers we had discussed at least two weeks prior to the posting. I didn't feel it was appropriate to unilaterally change that figure so I went with it but the reality was Karen was more 25% to 30% of her cancer-impacted self when I wrote that. Starting from there, the rest makes a lot more sense.
So, last week the intensity of Karen's headaches and nausea ratcheted up tremendously. As the week wore on, she ate less and less and struggled to find even a sliver of relief. Late Friday night, she was atypically awake, slitty-eyed on weed and painkillers but unable to drift off because of the pain in her head and the churning in her gut. Early-ish Saturday, I drove her to a shockingly empty ER where she was admitted immediately. The ER staff got her pain and nausea under control and started pumping what would turn out to be about two liters of fluid into her.
Because of Karen's situation and her medical history, the MRI scheduled for the following Monday was moved up to right fucking now and within a few hours a very nice and visibly distressed ER doctor confirmed that the MRI looked bad for her brain. It wasn't exactly a surprise--clearly something was seriously wrong. We exchanged knowing looks and then tried to reassure the doctor that it was all right. Karen was admitted to the hospital soon after.
There were additional tests the next few days after they got her symptoms more under control: a CT scan from the neck down, a series of spinal MRI's, and eventually even a Lumbar Puncture (i.e. a spinal tap). Somewhere in there, Dr. Massulo, one of our radiation oncologists, visited to fill us in on what the tests revealed. In a soft and sleepy, Tony Shaloub in Galaxy Quest tone of voice he informed us what he had was a "terrible diagnosis." Karen had developed leptomeningeal metastases.
That was the moment we found out what was going to kill her.
Dr. Massulo's somber tone was echoed the next day when I ran into Dr. Moini (our main radiation oncologist) on my way to get a dismal slab of Earth's worst ziti from the hospital cafeteria. She nodded empathetically and then tried to pat me comfortingly on the shoulder. But she was at kind of an off angle and her arm was kind of oddly open in a way and she missed my shoulder proper and, you know, she usually hugs Karen like a hug-crazy hugging demon every time we see her and so I thought she was trying to hug me and, no surprise, I'm really a fairly stingy and judicious hugger so I was kind of panicked and didn't know what to do but it seemed weird and clearly rude to rebuff her so I hugged her back and then I realized "Oh shit, she clearly has no desire to hug me!" but by then we were tangled and trapped in this extremely awkward embrace where we both desperately wanted to get away from the other person but were kind of maintaining it to spare each of us embarrassment.
So, just in case you were wondering, I still cannot read social cues.
Karen was released from the hospital after five days. She had that spinal tap the morning of her departure and in matter of hours the pain was turned up to 11 (see what I did there?!). Apparently when you drain some of the spine juice out of you there's no longer enough for the brain to float so instead it kind of sags in your skull. "I've never been so aware of my brain as separate from my head before as now," Karen shared in between long luxurious draws on her vaporizer.
The pain persisted into the next day (and beyond, for that matter, but it should clear up in a couple days). It was so crippling that when we went to our follow-up appointment with Dr. Moini--whose hand I would firmly shake immediately upon seeing her--that Karen only made it a few steps into the office before she doubled over vomiting and clutching her head. We called off the brain mapping for that day and rescheduled it for this coming Tuesday.
The day after that (just yesterday) we saw our primary oncologist, Dr. Sherman and discussed options. Karen pushed for clarity on a couple of important points. Yes, the doctor confirmed, the countdown clock had officially started ticking. Yes, he said, the leptomeningeal disease was ultimately going to be culprit. And yes, the focus now was on managing her death as opposed to extending her life.
It's weird, you know. We saw this coming a mile away. We had roughly three years of time to brace for a crushing impact we knew was inevitable. And it still managed to take us by surprise. It was completely predictable and it still got us off-guard.
We left Sherman's office certain of only one thing: Karen would go ahead with full brain radiation. Along with the leptomeningeal disease, the new MRI revealed another trio of brain lesions. We opted to go with the radiation (10 treatment total) in order to knock those bastards back and, most importantly, to get Karen some relief from the nausea and headaches the new mets were causing. The purpose here, is essentially palliative.
Less clear was the way forward. We had discussed a number of possible options at Sherman's but no commitments had been made. As the evening wore on, Karen let me and the kids know that she does not want to undergo any more procedures--this took out the option that involved installing a shunt on her head to deliver meds directly into her spinal fluid. She also does not want to endure any more chemo and/or the attendant side effects. That took out most everything else. We haven't told the doctor yet.
But we're telling you, our friends and our family.
What this all means is that once the radiation ends, Karen is almost certain to begin hospice care. We say "almost certain" just in case some as yet unknown golden unicorn of a treatment appears with no side effects and whatnot, well, she's up for that. But since that is about as likely as me learning how and when to hug people, hospice seems like the safe bet.
Because we haven't informed Sherman of this as of yet, we don't have a solid, clear idea of a timeline but a quick and miserable googling of leptomeningeal cancer suggests that we can expect her to last just 4-6 weeks after treatment is ended. A painful lingering does not seem to be in the cards.
Clearly, this is all terrible news but we really want to emphasize that for us--and especially for Karen--this is actually kinda good news. While swift and merciless, the death she now faces should be relatively painless, at least compared to the possibility of drowning in slow motion as her lungs fill with tumors. There will be plenty of awful to go around, with possible strokes and seizures and all sorts of neurological fallout, but she should be spared suffering. She will die at home, with her family and her dogs nearby. This, sadly, is the best we can hope for and here's hoping it plays out the way we desperately want it to.
Thanks to you all for your support. It has meant and continues to mean the world to to Karen, to myself, and to our family. Please reach out to me if you would like to see or talk to Karen in the days ahead and we will do our level best to make it happen. I promise to make more regular updates to this blog so that people are not in the dark.
The truth is that the whole "Karen is at 60%" assertion was based on numbers we had discussed at least two weeks prior to the posting. I didn't feel it was appropriate to unilaterally change that figure so I went with it but the reality was Karen was more 25% to 30% of her cancer-impacted self when I wrote that. Starting from there, the rest makes a lot more sense.
 |
| Sorry, Robert Mitchum--Elliot Gould is the Coffey family Marlowe. |
Because of Karen's situation and her medical history, the MRI scheduled for the following Monday was moved up to right fucking now and within a few hours a very nice and visibly distressed ER doctor confirmed that the MRI looked bad for her brain. It wasn't exactly a surprise--clearly something was seriously wrong. We exchanged knowing looks and then tried to reassure the doctor that it was all right. Karen was admitted to the hospital soon after.
There were additional tests the next few days after they got her symptoms more under control: a CT scan from the neck down, a series of spinal MRI's, and eventually even a Lumbar Puncture (i.e. a spinal tap). Somewhere in there, Dr. Massulo, one of our radiation oncologists, visited to fill us in on what the tests revealed. In a soft and sleepy, Tony Shaloub in Galaxy Quest tone of voice he informed us what he had was a "terrible diagnosis." Karen had developed leptomeningeal metastases.
That was the moment we found out what was going to kill her.
 |
| Bane and Batman are better at hugs than me. |
So, just in case you were wondering, I still cannot read social cues.
Karen was released from the hospital after five days. She had that spinal tap the morning of her departure and in matter of hours the pain was turned up to 11 (see what I did there?!). Apparently when you drain some of the spine juice out of you there's no longer enough for the brain to float so instead it kind of sags in your skull. "I've never been so aware of my brain as separate from my head before as now," Karen shared in between long luxurious draws on her vaporizer.
The pain persisted into the next day (and beyond, for that matter, but it should clear up in a couple days). It was so crippling that when we went to our follow-up appointment with Dr. Moini--whose hand I would firmly shake immediately upon seeing her--that Karen only made it a few steps into the office before she doubled over vomiting and clutching her head. We called off the brain mapping for that day and rescheduled it for this coming Tuesday.
The day after that (just yesterday) we saw our primary oncologist, Dr. Sherman and discussed options. Karen pushed for clarity on a couple of important points. Yes, the doctor confirmed, the countdown clock had officially started ticking. Yes, he said, the leptomeningeal disease was ultimately going to be culprit. And yes, the focus now was on managing her death as opposed to extending her life.
 |
| Yeah, no shit, Mr. Road Sign. |
We left Sherman's office certain of only one thing: Karen would go ahead with full brain radiation. Along with the leptomeningeal disease, the new MRI revealed another trio of brain lesions. We opted to go with the radiation (10 treatment total) in order to knock those bastards back and, most importantly, to get Karen some relief from the nausea and headaches the new mets were causing. The purpose here, is essentially palliative.
Less clear was the way forward. We had discussed a number of possible options at Sherman's but no commitments had been made. As the evening wore on, Karen let me and the kids know that she does not want to undergo any more procedures--this took out the option that involved installing a shunt on her head to deliver meds directly into her spinal fluid. She also does not want to endure any more chemo and/or the attendant side effects. That took out most everything else. We haven't told the doctor yet.
But we're telling you, our friends and our family.
What this all means is that once the radiation ends, Karen is almost certain to begin hospice care. We say "almost certain" just in case some as yet unknown golden unicorn of a treatment appears with no side effects and whatnot, well, she's up for that. But since that is about as likely as me learning how and when to hug people, hospice seems like the safe bet.
Because we haven't informed Sherman of this as of yet, we don't have a solid, clear idea of a timeline but a quick and miserable googling of leptomeningeal cancer suggests that we can expect her to last just 4-6 weeks after treatment is ended. A painful lingering does not seem to be in the cards.
Clearly, this is all terrible news but we really want to emphasize that for us--and especially for Karen--this is actually kinda good news. While swift and merciless, the death she now faces should be relatively painless, at least compared to the possibility of drowning in slow motion as her lungs fill with tumors. There will be plenty of awful to go around, with possible strokes and seizures and all sorts of neurological fallout, but she should be spared suffering. She will die at home, with her family and her dogs nearby. This, sadly, is the best we can hope for and here's hoping it plays out the way we desperately want it to.
Thanks to you all for your support. It has meant and continues to mean the world to to Karen, to myself, and to our family. Please reach out to me if you would like to see or talk to Karen in the days ahead and we will do our level best to make it happen. I promise to make more regular updates to this blog so that people are not in the dark.
Tuesday, August 25, 2015
Landsharks and Cheese
The blog has been pretty quiet of late because, well, our lives have been pretty quiet as well. In a wholly unexpected way, we've grown kind of bored with the whole cancer thing. It's actually transcended the everyday it had become to reform into something that is tedious and not especially deserving of conversation or attention.
Not that it doesn't assert itself regularly, in some sort of attempt to remain relevant in our lives. But its presence is now more like that of a house guest that has overstayed their welcome than the rabid honey badger tearing through our lives that it once was.
This is not to say that it has lost its teeth. It can still inflict injury. So maybe the more accurate model is of a house guest with shark tooth dentures and an unsettling habit of randomly chomping passersby.
But for the most part, we continue to just plug along. Early in August, Karen and I went to the wedding of my writing partner and all around swell guy, Eric Neigher, down in LA. The wedding was lovely and Karen happily stuck it out until the end (albeit after spending the bulk of each day in bed while I busied myself with work). Evenings, we'd venture outside to a relatively underpopulated courtyard so Karen could smoke her weed and we'd talk and talk. The weather was warm every evening and, with all due respect to the truly spectacular nuptials, these evening conversations might well have been the best part of our long weekend there.
But that trip was a sneak peak of what lay ahead for us. Karen's energy was clearly flagging and it only worsened after our return. Even a visit from Karen's sister, Liz, was not enough to rally her and she began spending more and more time in bed. A four-day string of bad headaches somewhere in there got us all concerned and then they disappeared for a few weeks only to begin to resurface although to a lesser degree, oh, right about now.
Not resurfacing: that vanishing energy. The truth is, right now, that Karen is at best at 60% capacity. And that is cancer-impacted capacity, not Karen-is-healthy capacity. Where before she bounced back pretty well from the Cyramza, she isn't now. Her days are now largely spent in bed, reading, watching TV, and napping a lot. Along with the loss of energy, she is dealing with frequent bouts of nausea and weakness so debilitating that she not infrequently needs assistance getting up from a chair or out of bed. The nausea comes with the added awesomeness of diminished appetite and the fact that nothing really tastes very good to her anymore.
In light of all of this unpleasantness, it wasn't really surprising that our anniversary was kind of nuked. Our 25th was situated smack in the middle of the month but we pushed the observation thereof out a week in order to accommodate what we hoped would be a week of chemo recovery. But that recovery never really came and as a result, no Cheese Penis.
[A moment of explanation: noted food scold Alice Waters has a lovely restaurant in Berkeley called Chez Panisse and because I am at heart a 12 year old boy I have referred to it as Cheese Penis since about five seconds after I knew about it.]
We had always meant to gobble up some Cheese Penis and I had made reservations for August 20. When the day came it was completely and utterly clear there was no way Karen was going to make it. She was utterly sapped. So I called Cheese Penis and asked if they did any kind of takeout. Of course not. The Cheese Penis doesn't come to you, you come to Cheese Penis. But when I explained the particulars of our situation, that policy changed. While I'd have to order from the cafe menu, they agreed to help us out. So I ordered a number of items--sadly, there was no Coq au Fromage to delight my middle-school sense of humor--and ran out to get it.
There was, as there always is, a shit ton of traffic but I was home in about two hours and Karen was none the wiser. I got her weeded up, dusted off my waiter skills in order to plate things nicely, and surprised her with a delightful three course meal. As romantic an anniversary as you could want, provided, of course, your definition of romance includes having your daughter chomping away on a Subway sandwich and fretting about work right across the table from you. Still and all, not too bad.
So if you're hankering for a tasty meal, I have to say: You could do worse than eating some Cheese Penis.
And now here we are. And where exactly is that? A waiting room apparently.
Right now, we are maintaining a holding pattern to figure out just what the deal is and what it's going to be. Next week, Karen will have an MRI to determine if the radiation treatment she had for the new brain mets was effective. If so, she'll be cleared to drive by the doctor (but probably not cleared by Common Sense since even she admits she's not in good enough shape to drive). If the radiation hasn't worked we have no clue what's next there.
We are also waiting on scan results, provide of course there is a scan. Our oncologist requested a new PET scan but even though this hews to the identical same schedule and criteria as every other PET scan Karen has had over the last 2.5 years, our insurance company declined it. A new request for a different, less expansive scan has been made but we do not have any idea when or even if it will occur. Karen is due for her next chemo infusion one week from today so they need to get it in prior to that to determine that she should still keep getting the Cyramza.
And the Cyramza question is a real concern now. Given Karen's symptoms, she could just be suffering from the accumulation of meds over the last several months or the Cyramza may have stopped working...which is exactly what it is supposed to be doing (or not doing, I guess) at precisely this point on the timeline.
If it's not working, the next drug (and her improbable fifth line of treatment) is pembrolizumab, the same thing that Jimmy Carter is getting pumped into him. As per usual when we sense a treatment's efficacy is waning, we have some trepidation and a sense of bracing for impact. But for the most part, we're just bored and trying to keep as much distance between us and our house guest as we can.
Not that it doesn't assert itself regularly, in some sort of attempt to remain relevant in our lives. But its presence is now more like that of a house guest that has overstayed their welcome than the rabid honey badger tearing through our lives that it once was.
 |
| Sadly, no Candygram for us. |
But for the most part, we continue to just plug along. Early in August, Karen and I went to the wedding of my writing partner and all around swell guy, Eric Neigher, down in LA. The wedding was lovely and Karen happily stuck it out until the end (albeit after spending the bulk of each day in bed while I busied myself with work). Evenings, we'd venture outside to a relatively underpopulated courtyard so Karen could smoke her weed and we'd talk and talk. The weather was warm every evening and, with all due respect to the truly spectacular nuptials, these evening conversations might well have been the best part of our long weekend there.
But that trip was a sneak peak of what lay ahead for us. Karen's energy was clearly flagging and it only worsened after our return. Even a visit from Karen's sister, Liz, was not enough to rally her and she began spending more and more time in bed. A four-day string of bad headaches somewhere in there got us all concerned and then they disappeared for a few weeks only to begin to resurface although to a lesser degree, oh, right about now.
Not resurfacing: that vanishing energy. The truth is, right now, that Karen is at best at 60% capacity. And that is cancer-impacted capacity, not Karen-is-healthy capacity. Where before she bounced back pretty well from the Cyramza, she isn't now. Her days are now largely spent in bed, reading, watching TV, and napping a lot. Along with the loss of energy, she is dealing with frequent bouts of nausea and weakness so debilitating that she not infrequently needs assistance getting up from a chair or out of bed. The nausea comes with the added awesomeness of diminished appetite and the fact that nothing really tastes very good to her anymore.
In light of all of this unpleasantness, it wasn't really surprising that our anniversary was kind of nuked. Our 25th was situated smack in the middle of the month but we pushed the observation thereof out a week in order to accommodate what we hoped would be a week of chemo recovery. But that recovery never really came and as a result, no Cheese Penis.
 |
| Pro Tip: Googling "cheese penis" gets you far fewer Cheeto pix. than you'd hope |
We had always meant to gobble up some Cheese Penis and I had made reservations for August 20. When the day came it was completely and utterly clear there was no way Karen was going to make it. She was utterly sapped. So I called Cheese Penis and asked if they did any kind of takeout. Of course not. The Cheese Penis doesn't come to you, you come to Cheese Penis. But when I explained the particulars of our situation, that policy changed. While I'd have to order from the cafe menu, they agreed to help us out. So I ordered a number of items--sadly, there was no Coq au Fromage to delight my middle-school sense of humor--and ran out to get it.
There was, as there always is, a shit ton of traffic but I was home in about two hours and Karen was none the wiser. I got her weeded up, dusted off my waiter skills in order to plate things nicely, and surprised her with a delightful three course meal. As romantic an anniversary as you could want, provided, of course, your definition of romance includes having your daughter chomping away on a Subway sandwich and fretting about work right across the table from you. Still and all, not too bad.
So if you're hankering for a tasty meal, I have to say: You could do worse than eating some Cheese Penis.
And now here we are. And where exactly is that? A waiting room apparently.
Right now, we are maintaining a holding pattern to figure out just what the deal is and what it's going to be. Next week, Karen will have an MRI to determine if the radiation treatment she had for the new brain mets was effective. If so, she'll be cleared to drive by the doctor (but probably not cleared by Common Sense since even she admits she's not in good enough shape to drive). If the radiation hasn't worked we have no clue what's next there.
We are also waiting on scan results, provide of course there is a scan. Our oncologist requested a new PET scan but even though this hews to the identical same schedule and criteria as every other PET scan Karen has had over the last 2.5 years, our insurance company declined it. A new request for a different, less expansive scan has been made but we do not have any idea when or even if it will occur. Karen is due for her next chemo infusion one week from today so they need to get it in prior to that to determine that she should still keep getting the Cyramza.
And the Cyramza question is a real concern now. Given Karen's symptoms, she could just be suffering from the accumulation of meds over the last several months or the Cyramza may have stopped working...which is exactly what it is supposed to be doing (or not doing, I guess) at precisely this point on the timeline.
If it's not working, the next drug (and her improbable fifth line of treatment) is pembrolizumab, the same thing that Jimmy Carter is getting pumped into him. As per usual when we sense a treatment's efficacy is waning, we have some trepidation and a sense of bracing for impact. But for the most part, we're just bored and trying to keep as much distance between us and our house guest as we can.
Subscribe to:
Posts (Atom)