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.

Sadly, no Candygram for us.

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.

Pro Tip: Googling "cheese penis" gets you far fewer Cheeto pix. than you'd hope

[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.

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.

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?

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.

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.

Test Time

I haven't been blogging of late because there hasn't been much in the way of news. Dash moved back home from NYC after deciding he'd like a little more support nearby. That's the biggest news. Otherwise, our day-to-day is stuck in a well-worn rut.

And it appears that we'll be stuck in that rut for awhile. This past week Karen had a new MRI and new PET scan and the reports from both were good. So she'll keep taking her current chemo on the same three week cycle until it stops working.

The success of Karen's treatment means that she celebrated her third birthday since being diagnosed. We observed by NOT going to the French Laundry and instead I made fried chicken. At this point, the whole "probable last INSERT HOLIDAY" mindset has lost its power since we've had multiple birthdays, Christmases, etc and the whole thing leaves us--well, at least, me--feeling like crybabies who keep crying wolf. So going forward, we're operating under the assumption that finality is a ways off. At this point, it feels like the odds are that Karen will beat the odds because she's been doing so consistently through this delightful time.

Not that doing so is especially easy. All of the testing feels like being subjected to a series of mock executions, with each of us wondering if this time is the time the hammer falls. Good news is a relief to be sure, but bracing for the worst is pretty reflexive this far in and expending all that very fraught emotional energy for no good reason can add a surprisingly infuriating (but minor) component to an otherwise happy bit of news. It's just another wonderful way that cancer fucks with you.

Good News? What's Up With That?

We are sneaking up on two weeks post-Karen's last chemo treatment, the one with the reduced taxotere dosage and guess what? Reducing that shit makes a difference.

It didn't look like it would at first; in fact, if anything, our initial impressions post-infusion were that the taxotere might have actually been softening the side effects of the chemo. Unlike previous treatments where Karen had about 36-48 hours before the side effects leveled her, the fatigue and the aches and the nausea and all that fun stuff hit her that same day, within a handful of hours after returning home. It did not look even remotely promising.

And then, about a full week after the treatment, she started to rebound and by last Thursday (nine days after chemo) she was more or less back to a semblance of normal. We waited a day or so to see if it would hold since there have been occasional spikes of livable life during her chemo malaise so we didn't really expect the good to hold for more than 12 hours. But, incredibly, it has.

We are now just shy of two weeks after the last chemo and she is still up and about and doing things which is a marked and very welcome improvement over what this chemo has been. She's back to doing things at her church, staying awake most of the day, and so on. On the selfish side of things, it means I don't spend my nights rattling around the house alone. It's been shocking how isolating this has been for me because, you know, I'm not actually sick. But with essentially no one else in the house except for us (Dash is in NYC now and Miranda is super-busy and absent virtually all day every day, especially weekends) and with Karen largely out of commission, it leaves me with more solitude than even a dedicated asocial introvert hermit like myself knows what to do with.

So it's nice not to talk just to myself for a change.

We are pretty happy with things at the moment, all things considered. Odds are, this is a last hurrah but it's awfully nice that it looks like we'll get to enjoy a good, full-throated hurrah and not some weak mewling one.

We'll take it.

The One With the Obscure Li'l Abner Reference

"As horrible as it's been, it's gone about as well as possible."

That was Karen's summary about a week ago of our two years plus of cancer shenanigans. She was laid out in bed when she said it, just like she is most days. And she barely had the energy to say it at the time, just like most--but not all--days. And at the time she said it we both thought that we were rapidly approaching the end game, with nightly conversations dominated by topics like "quality of life" and "ending treatment." We were edging up to calling it quits.

SPOILER ALERT: We were wrong.

Two days ago Karen had a PET scan to see if this new chemo was working. I reviewed the images on the disc we were given but, try as I might, I couldn't quite tell if things were good or bad. Which meant the news would most likely be good but we were both gripped with uncertainty and a certain degree of, oh, let's call it dread. Fortunately, there are professionals that read these things much better than I and at this morning's oncology appointment we were told that the new chemo infusion was getting the job done and then some. That is more than good news--it's great news. So, going forward, Karen will continue to receive this cocktail every three weeks. Good stuff.

As outstanding as this new is, it struggles mightily to find enough silver to line the pack of clouds that doggedly hover overhead. As nice as it is that Karen is going to stay alive and with us awhile longer, her quality of life has deteriorated to the degree that she has been seriously debating discontinuing treatment. With her long-past original IV chemo regimen, she would have at least one solidly good week out of the three between treatments. This was a good week (or, more typically, a full ten days) where she was up and about, driving short distances, staying awake most of the day, and capable of light physical activity. That model has shifted with this chemo mixture. Now she has two terrible weeks in bed (with pain, a  very sore throat, persistent and crippling nausea, and on and on) followed by a third week where she still can barely manage to do much and frequently has to retire to bed after doing the simplest thing, like eating. Her fatigue is simply crushing at this point. Every action requires her to scrape through the bottom of her Energy Reserves Barrel and into the earth beneath said barrel in order to find any energy spillage that might make it possible for her to lurch up off the couch on her third attempt. It's heartbreaking to see.

That fatigue is the main driver in diminishing her quality of life and that is why, even though we are keeping up the chemo, the actual formulation of the cocktail is going to be adjusted. The Taxocrete, according to Dr. Sherman, is the likely culprit behind her exhaustion so that drug is going to be dramatically reduced in the hopes that whatever is left of Karen's life is tolerable and worth the trouble. She gets her next treatment the Tuesday after the Super Bowl. And then every three weeks going forward until it stops working.


STATUS UPDATE

• Karen's cancer has been beaten into submission with the new chemo. Hooray!
• Karen's new chemo is making her life miserable. Boo!
• The chemo formulation going forward will reduce the Taxocrete in the hopes that it is the culprit behind the more odious side effects. Aha!
• Fewer terrible side effects should markedly improve Karen's quality of life. Huzzah!
• If that doesn't work, things could get interesting in all the wrong ways. Oh shit!