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.
Monday, September 28, 2015
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.
Friday, July 10, 2015
Irony Thy Name is Ironical
In the greatest stroke of irony since Alanis Morissette wrote a whole song about irony which included absolutely zero instances of said irony, Karen got her new driver's license today.
Yesterday, our radiation oncologist told her she had to abstain from driving for at least the next six weeks. O. Henry high-fived us from the grave.
Backtracking a bit, Karen's license had not been renewed by the DMV since she had medical issues which could hinder her ability to drive. Without a valid license, Karen had to stop driving and this limitation on her independence drove her nuts and you really couldn't blame her. A steady march of losses both large and small is one of the defining qualities of the cancer experience and this latest in a string of indignities especially stung.
However, a few weeks ago, I took her to a delightful 8AM interview where we reassured the DMV that she currently had nothing going on that would impair her driving ability. Confident that the driving populace faced no immediate threat from her 5 minute trips to Starbucks, Safeway, or church, she was granted a temporary license.
But then: brain lesions. Karen's radiation treatment went well enough these past three days aside from some headachiness. We were a little startled to discover that the Tumor Board had upped her brain mass total from "one, maybe two" to a definitive "three growths." Still, everything was pretty small and there is no reason to believe that she won't respond as well to this round of brain treatment as she did the last time.
But with yesterday's final brain-zapping, Karen was told that the lesions as well as the treatment left her at a disadvantage when it came to driving. She could have a tiny seizure or stroke or something that would not even really register as such and could be experienced as little more than a sliver of lost time not unlike having your attention drift. Not exactly the sort of thing you need have happen when you're driving that big ugly minivan of hers.
24 hours later...the brand new license that represented sustaining an especially prized degree of freedom and agency arrived literally one day late.
Ideally, this is just a short setback. They have accelerated the schedule for Karen's next MRI to six weeks from now instead of two months. If the results are good, she'll be back on the road then. If not, well, Miranda and I will need to invest in chauffeur caps.
Yesterday, our radiation oncologist told her she had to abstain from driving for at least the next six weeks. O. Henry high-fived us from the grave.
Backtracking a bit, Karen's license had not been renewed by the DMV since she had medical issues which could hinder her ability to drive. Without a valid license, Karen had to stop driving and this limitation on her independence drove her nuts and you really couldn't blame her. A steady march of losses both large and small is one of the defining qualities of the cancer experience and this latest in a string of indignities especially stung.
However, a few weeks ago, I took her to a delightful 8AM interview where we reassured the DMV that she currently had nothing going on that would impair her driving ability. Confident that the driving populace faced no immediate threat from her 5 minute trips to Starbucks, Safeway, or church, she was granted a temporary license.
But then: brain lesions. Karen's radiation treatment went well enough these past three days aside from some headachiness. We were a little startled to discover that the Tumor Board had upped her brain mass total from "one, maybe two" to a definitive "three growths." Still, everything was pretty small and there is no reason to believe that she won't respond as well to this round of brain treatment as she did the last time.
But with yesterday's final brain-zapping, Karen was told that the lesions as well as the treatment left her at a disadvantage when it came to driving. She could have a tiny seizure or stroke or something that would not even really register as such and could be experienced as little more than a sliver of lost time not unlike having your attention drift. Not exactly the sort of thing you need have happen when you're driving that big ugly minivan of hers.
24 hours later...the brand new license that represented sustaining an especially prized degree of freedom and agency arrived literally one day late.
Ideally, this is just a short setback. They have accelerated the schedule for Karen's next MRI to six weeks from now instead of two months. If the results are good, she'll be back on the road then. If not, well, Miranda and I will need to invest in chauffeur caps.
Sunday, July 5, 2015
Head Games Part the Second
It says something about the course our lives have taken when the loss of our Internet/TV access for 14 hours (more or less) causes less more consternation and hand-wringing than the fact that one--maybe two--teeny slivers of new brain lesions have appeared inside Karen's noggin.
Karen had another MRI this past Monday and that was how we discovered the new met(s) there. While the sites she had treated previously continued to appear dormant, there was a brand new 5mm lesion on the front left portion of the brain. Another even smaller possible lesion was on the right but we'll need to wait for the star chamber of the hospital's ominous-sounding Tumor Board to determine just what the hell might or might not be happening there (it will involve fancy computer software that compensates for changing patient head positions in successive MRIs).
But that one lesion is pretty definitive so Karen will need to have it treated. And if that other one needs attention, it'll need treatment as well. As before, the course of action here will be zaps of radiation. The lesions are small enough that they could probably murder death kill those suckers in a single shot but to minimize any collateral damage to the surrounding brainmeat, the treatments will be spread out over three treatments. These will start the day after tomorrow, Tuesday the 7th.
Now, tumors in the brain are, as you'd imagine, no joke. I think if there's one thing that Karen is especially fearful of it's brain metastases. The lingering effects of her first and significantly larger radiation treatment (compounded no doubt by "chemo brain") are frustrating for her: struggling occasionally to pull the right word from the fog clouding the vocabulary chunk of her brain, some short term memory issues, and some general forgetfulness. And it's hard not to remember with a degree of dread what it was like the first time these mets appeared. Struggling to recall how to play a DVD. Wanting to say something but not finding the words. Having to nod or shake her head to yes/no questions we posed to find out what was on her mind that she couldn't say. All of that is not something she wants to return to. Who could blame her?
And yet...we took it surprisingly in stride. Because the mets are super tiny and we've been down the radiation road before and really there's no point to wetting our pants until, well, there's a good reason to urinate like firehoses. This seems totally manageable and not an especially big deal, all things considered.
So....yay?
But that one lesion is pretty definitive so Karen will need to have it treated. And if that other one needs attention, it'll need treatment as well. As before, the course of action here will be zaps of radiation. The lesions are small enough that they could probably murder death kill those suckers in a single shot but to minimize any collateral damage to the surrounding brainmeat, the treatments will be spread out over three treatments. These will start the day after tomorrow, Tuesday the 7th.
Now, tumors in the brain are, as you'd imagine, no joke. I think if there's one thing that Karen is especially fearful of it's brain metastases. The lingering effects of her first and significantly larger radiation treatment (compounded no doubt by "chemo brain") are frustrating for her: struggling occasionally to pull the right word from the fog clouding the vocabulary chunk of her brain, some short term memory issues, and some general forgetfulness. And it's hard not to remember with a degree of dread what it was like the first time these mets appeared. Struggling to recall how to play a DVD. Wanting to say something but not finding the words. Having to nod or shake her head to yes/no questions we posed to find out what was on her mind that she couldn't say. All of that is not something she wants to return to. Who could blame her?
And yet...we took it surprisingly in stride. Because the mets are super tiny and we've been down the radiation road before and really there's no point to wetting our pants until, well, there's a good reason to urinate like firehoses. This seems totally manageable and not an especially big deal, all things considered.
So....yay?
Thursday, June 4, 2015
I Have No Mouth And I Must Scream
So, contrary to what we thought, Karen's cancer is not back.
And that good news got me absolutely furious yesterday. Which clearly makes me an awful person but I'll try to explain that away in a minute.
So here's the deal. More than two weeks ago, Karen began coughing. Just a little at first but with each passing day the cough got a little worse while her energy dropped just a bit right alongside it. This unhappy tandem is pretty familiar to us--this was the same trajectory we saw when the cancer first showed up and every single time a treatment stopped working for her. Tiny cough, nap, bigger cough, longer nap, Camille-caliber cough, and so on. Granted, somewhere in these few weeks Karen developed a sinus infection but that got cleared right up with some antibiotics.
The cough, however, stubbornly remained and grew worse. This generated a series of sober conversations between the two of us about the ominous form that our summer seemed to be taking. Karen's next line of treatment (her fifth) has a fairly slim chance of working in any way for her.
Naturally, we responded to these daunting odds by packing up our terrible luck and taking the kids to Vegas for a four-day holiday shoehorned in between everyone's work, school, and chemo schedules. We had a PET scan scheduled for the day after we got back and we were expecting it to be the scissors that cut the rope to the grand piano looming three stories overhead.
The trip, however, went well in spite of this. At this point, there's a part of us that is very 'wait and see' because this disease consistently does its level best to confound us at every turn. While we tend to believe that Karen's intuition about what her body is up to is more or less fairly reliable, we know now that we really cannot count on our hunches because they haven't been 100% accurate. And it's kind of old news, in a way, the cancer coming back. We try not to panic until it's really appropriate to do so.
So we put all that shit aside and enjoyed Vegas as much as possible. Miranda and I drove race cars while Dash and Karen were taken on a high-speed drifting ride at the same race track. I took the kids to shoot machine guns. We ate well, slept in, and took in the seedy glories of the Strip. There were but two real hiccups during our vacation: 1) Dash and I got a hellacious chest cold that left us honking like seals and 2) when I closed the overhead luggage bin on our flight home the oxygen masks deployed and caused about an hour delay for the flight (making me especially beloved among our fellow travelers).
The morning after we got home, Karen had her scan and brought home our lovely souvenir DVD with all the images on it. I popped it in my PC and reviewed it. There were some spots on her liver but we've learned that a lot of the fuzziness there is due to cysts so I took note of them but discounted them. The lymph nodes in her neck were lit up more than usual which was concerning but they were small and I didn't really see any growth there. There was something going on in her esophagus but it wasn't really definitive--I figured it could be new cancer but could just as easily represent the irritation the chemo causes in her throat. So that didn't get a ton of weight.
But her right lung...that was a different story. A bright corona of something was wrapped around the lower portion of the organ and it seemed pretty clear that this was the sort of colonization we had seen in previous scans when her lungs were polluted with growth. With this representing our fifth time facing this sort of news, Karen and I took in pretty much in stride. In spite of the fact that we were facing roughly about a 10% chance the next treatment would even work. At this point, we've kind of had the panic burned out of us.
And the next day the doctor called and said everything looked good and there would be no changes in treatment and we couldn't believe it. We didn't believe it so much we went to the oncologist's to get the printed report to make sure there hadn't been some kind of clerical error. The summary of the report, which everyone kept pointing to, made no mention of what we saw on the lung while everything else I had noted was there and dismissed along virtually the same lines I detailed above. Of course, the images the office had on file at the moment completely didn't show this which left everyone wondering just what the hell we were talking about.
In the end, there was something buried in the report about her lung which dismissed it as evidence of a possible infection (she's on some new antibiotics the size of thumbs for the next two weeks to clear that up). Now, granted, I'm a professional typist of stack-ranked bulleted summaries, but it seems to me that when you're dealing with lung cancer patients it just might be worth including the actual lung discussion in the summary that everyone jumps to and depends on. Talk about burying the lede.
And this is right about when I became a terrible terrible human being.
I was mad. Actually, no, I was furious. I was furious that her cancer wasn't back and that she was, in a very relative way, quite fine.
Like I said: terrible.
The intensity of my rage caught me completely off guard and it subsided only when my self-loathing for feeling this way temporarily trumped it.
But before you join me in consigning me to into the Depository of Horrible Humans, let me try to explain it. We've always known where this awful journey is going to end. The experience is akin to being adrift in a shitty little lifeboat drifting towards the rocks that will eventually kill everyone aboard. We can't see the rocks but we know they're out there. So while you can definitely make the most of the days that are not spent actively drowning, you do so in full knowledge that sooner or later you'll be gulping in lungfuls of seawater. If you would allow me to mix metaphors for a moment, it's not unlike trying to enjoy a picnic next to a ticking bomb without a convenient timer display. Not only is this not user-friendly explosive design, it's not a terribly comfy way to live.
So when you see the rocks, you hate the rocks but at least you finally have a handle on something defined. "Hey, look! It's the end of us! Let's brace for impact." And you brace and then somehow the rock recede out of sight and you're stuck in limbo all over again. And now, you can't even trust your own eyes to get your bearings. It's hard not to feel like the cancer is sentient and actively fucking with us. And that, my friends, pissed me off something fierce.
Anyway, that was our day (and my shitty response) yesterday. We're still in the lifeboat, squinting into the distance and holding hands.
And that good news got me absolutely furious yesterday. Which clearly makes me an awful person but I'll try to explain that away in a minute.
So here's the deal. More than two weeks ago, Karen began coughing. Just a little at first but with each passing day the cough got a little worse while her energy dropped just a bit right alongside it. This unhappy tandem is pretty familiar to us--this was the same trajectory we saw when the cancer first showed up and every single time a treatment stopped working for her. Tiny cough, nap, bigger cough, longer nap, Camille-caliber cough, and so on. Granted, somewhere in these few weeks Karen developed a sinus infection but that got cleared right up with some antibiotics.
The cough, however, stubbornly remained and grew worse. This generated a series of sober conversations between the two of us about the ominous form that our summer seemed to be taking. Karen's next line of treatment (her fifth) has a fairly slim chance of working in any way for her.
Naturally, we responded to these daunting odds by packing up our terrible luck and taking the kids to Vegas for a four-day holiday shoehorned in between everyone's work, school, and chemo schedules. We had a PET scan scheduled for the day after we got back and we were expecting it to be the scissors that cut the rope to the grand piano looming three stories overhead.
The trip, however, went well in spite of this. At this point, there's a part of us that is very 'wait and see' because this disease consistently does its level best to confound us at every turn. While we tend to believe that Karen's intuition about what her body is up to is more or less fairly reliable, we know now that we really cannot count on our hunches because they haven't been 100% accurate. And it's kind of old news, in a way, the cancer coming back. We try not to panic until it's really appropriate to do so.
 |
| Vacation Photo #1 |
So we put all that shit aside and enjoyed Vegas as much as possible. Miranda and I drove race cars while Dash and Karen were taken on a high-speed drifting ride at the same race track. I took the kids to shoot machine guns. We ate well, slept in, and took in the seedy glories of the Strip. There were but two real hiccups during our vacation: 1) Dash and I got a hellacious chest cold that left us honking like seals and 2) when I closed the overhead luggage bin on our flight home the oxygen masks deployed and caused about an hour delay for the flight (making me especially beloved among our fellow travelers).
 |
| Vacation Photo #2 |
The morning after we got home, Karen had her scan and brought home our lovely souvenir DVD with all the images on it. I popped it in my PC and reviewed it. There were some spots on her liver but we've learned that a lot of the fuzziness there is due to cysts so I took note of them but discounted them. The lymph nodes in her neck were lit up more than usual which was concerning but they were small and I didn't really see any growth there. There was something going on in her esophagus but it wasn't really definitive--I figured it could be new cancer but could just as easily represent the irritation the chemo causes in her throat. So that didn't get a ton of weight.
But her right lung...that was a different story. A bright corona of something was wrapped around the lower portion of the organ and it seemed pretty clear that this was the sort of colonization we had seen in previous scans when her lungs were polluted with growth. With this representing our fifth time facing this sort of news, Karen and I took in pretty much in stride. In spite of the fact that we were facing roughly about a 10% chance the next treatment would even work. At this point, we've kind of had the panic burned out of us.
And the next day the doctor called and said everything looked good and there would be no changes in treatment and we couldn't believe it. We didn't believe it so much we went to the oncologist's to get the printed report to make sure there hadn't been some kind of clerical error. The summary of the report, which everyone kept pointing to, made no mention of what we saw on the lung while everything else I had noted was there and dismissed along virtually the same lines I detailed above. Of course, the images the office had on file at the moment completely didn't show this which left everyone wondering just what the hell we were talking about.
In the end, there was something buried in the report about her lung which dismissed it as evidence of a possible infection (she's on some new antibiotics the size of thumbs for the next two weeks to clear that up). Now, granted, I'm a professional typist of stack-ranked bulleted summaries, but it seems to me that when you're dealing with lung cancer patients it just might be worth including the actual lung discussion in the summary that everyone jumps to and depends on. Talk about burying the lede.
And this is right about when I became a terrible terrible human being.
I was mad. Actually, no, I was furious. I was furious that her cancer wasn't back and that she was, in a very relative way, quite fine.
Like I said: terrible.
The intensity of my rage caught me completely off guard and it subsided only when my self-loathing for feeling this way temporarily trumped it.
But before you join me in consigning me to into the Depository of Horrible Humans, let me try to explain it. We've always known where this awful journey is going to end. The experience is akin to being adrift in a shitty little lifeboat drifting towards the rocks that will eventually kill everyone aboard. We can't see the rocks but we know they're out there. So while you can definitely make the most of the days that are not spent actively drowning, you do so in full knowledge that sooner or later you'll be gulping in lungfuls of seawater. If you would allow me to mix metaphors for a moment, it's not unlike trying to enjoy a picnic next to a ticking bomb without a convenient timer display. Not only is this not user-friendly explosive design, it's not a terribly comfy way to live.
So when you see the rocks, you hate the rocks but at least you finally have a handle on something defined. "Hey, look! It's the end of us! Let's brace for impact." And you brace and then somehow the rock recede out of sight and you're stuck in limbo all over again. And now, you can't even trust your own eyes to get your bearings. It's hard not to feel like the cancer is sentient and actively fucking with us. And that, my friends, pissed me off something fierce.
Anyway, that was our day (and my shitty response) yesterday. We're still in the lifeboat, squinting into the distance and holding hands.
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