PET (scan) Sounds

Prior to Karen's fourth round of chemo this morning, we got the results of last week's PET scan. The results were mixed. On the one hand, the none of her tumors showed any growth. In fact, a number of them had actually reduced in size. Arresting and/or reversing tumor growth is basically the whole point of this exercise so that was pretty nice to hear.

One one hand, and on the other hand....

Then again...there's that pesky 'other hand.' So, on that other hand, the PET scan revealed that the activity rate of several of the various cancer sites had increased a great deal. So while they aren't producing new cancer cells they are furiously at work trying to. This is the not so fantastic part of the results. Especially when you look back at the great response Karen enjoyed from the crizotinib which not only shrunk her tumors but shut those cancer factories the fuck down.

Mixed results like this are pretty standard so we can't really mewl about it too much. If we're going to do that sort of thing, we should really focus that energy on how terribly chemo went today. Karen was absolutely poleaxed by nausea and intense abdominal cramping during her infusion. After unplugging her IV for the fourth time so she could wheel the thing into the bathroom while she vomited, we opted to stop plugging it in and let the battery carry the load for the last few bags of drugs. The plug for the thing was awkwardly located behind her chemo recliner and it was just a pain to get it back in while tiptoeing over her IV lines and all. Happily, we were in the chair right next to the bathroom--not because we had some kind of foresight but because my antisocial tendencies had me homing in on it since it was the furthest away from the other patients.

Karen has spent the rest of today in bed, sleeping most of the time. That said, she did muster the energy to watch the latest episode of True Detective with me. We watched on the TV in our bedroom since she didn't want to walk into the living room to watch on the big TV, partly because of the peripheral neuropathy she's developed over the last few weeks. The neuropathy is a clear side effect of the chemo and it is essentially nerve damage that is occurring in her hands and feet. Her hands get achy but it's her feet that are the real problem. If she's off her feet, they itch like crazy and no amount of scratching helps. If you, like me, have had to wear a cast for a broken bone and had an itch just out of the reach of a bent up wire hanger, you know what that's like. Walking is worse. With shoes on, her feet hurt some but she can get around. But shoes make her feet even itchier. Barefoot, the pain when she walks is much more intense and she is the embodiment of wobbly, clutching onto chair backs, counter tops, walls, and the people around her to move around the house. It's like having a toddler in the house all over again.

Brain Drain

Karen had another MRI this afternoon and right afterwards we met with the doctor to find out the results. I was in a pretty good mood since I had just beaten three levels with perfect scores in Pixel Junk Monsters while I waited for Karen to finish. What could possibly put a damper on my day?

Not her MRI results, that's for sure. The three metastases had shriveled up dramatically thanks to the radiation. One of them was almost gone it had been so thoroughly zapped. Even better, there was no evidence of any "seeding" of new mets. Really, the only drawback to the radiation was that Karen somehow failed to develop any superpowers. Or perhaps they just haven't manifested yet....

That's one big test down, one big test to go. Karen will have another PET scan on Thursday the 20th and we'll get the results of that right before her chemo treatment on Monday the 24th. We are crossing fingers.

This, apparently, is what Karen's soul looks like.

In the meantime, Dash is on break from school which means he has a lot more free time to play GTA V online with his mother kibitzing from the couch. Which means I can expect to hear a lot more of the following:

"What now, Mom?"

"Kill that guy and take his money."

"Say no more."

Nice Man, Bad Wig

What a pleasant day.

Traficant, King of the Bad Wigs!

Although it is allegedly winter, the temperature in these parts was flirting with 70 today and it was lovely out. We were still basking in the warm afterglow of one Mr. Neal Rosen's 4.5 day visit with us over the last several days (he left on Tuesday). We also had the major portion of the latest swath of ruined flooring repaired early this morning and the guy did flat-out fantastic job. Since Dash has been borrowing my mountain bike to get to school everyday, I rolled up all my loose change and purchased a road bike so I can ride on the paved trails around here during the week. What more could make such a nice day even better?

Apparently, a visit to a funeral home. That, it would seem, is what passes for the cherry on top of the day's sundae for Karen and I.

And calling the visit we paid to the Hull's Chapel the highlight of the day isn't ironic. It more or less truly was. This has been the last bit of ugly business we'd been putting off since this whole mess started. I'd done a lot of preliminary calling and online researching several months ago and had more or less decided that Hull seemed like the right call. But we'd need to visit to know for sure and when Karen surprised us both by feeling fairly chipper this afternoon, we got in the car and drove right on over.

Behold an even less convincing toupee!

The funeral home is not all that far from the Walnut Creek BART (convenient for guests! and tons of parking, too!) in a part of town we rarely visit. Karen was concerned that we didn't have an appointment but I reasoned that while they probably don't get a lot of literal "walk in" business, we were unlikely to be the first surprise visitors.

Hull is a family run business, kind of like Six Feet Under but with sons that are nowhere near as dreamy as Michael C. Hall and Peter Krause. We met Mark Hull III and he was unfailingly warm and gracious and extremely patient and helpful. He was also possessed of a rather unconvincing toupee. He explained the whole process which was great since we haven't had to bury anyone legally before (the drifters in the crawlspace obviously do not count). We did our level best not to stare at the unsteady tilt of his wig as he spoke.

Sorry, Chuck. No one's buying it.

It's probably a little counter-intuitive to feel reassured by making plans for your spouse's/your own demise but that was the takeaway from our visit. If nothing else, just having an idea of how the whole thing works was comforting in a sideways kind of way. We just wish the place had wi-fi so that we can stream the eventual service for those that cannot manage to make the trip when the time comes. That said, I'm guessing one of our more technically savvy friends might be able to come up with a solution for us.

I've been trying to figure out why we actually enjoyed our visit and the best I've been able to come up with is this. Basically, this whole cancer thing is an unending series of terrible mysteries. You don't see what's killing you, you don't know when it's going to do something horrible to you like migrating to your brainmeat, you don't know if your treatments are working, you don't know anything. The one thing you do know--that there's going to be death--is still stuffed with uncertainty since you don't know when that little treat is going to happen. So something like this, something like planning a memorial service, something that is concrete and tangible and controllable...that gives you a small bit of certainty that at least one thing is going to go according to your wishes.

And that, I guess, is what passes for comfort right now.

Holding Unsteady

Now that's a headache.

Chemo round #3 took place this past Monday and true to form, it took about a day and half for the meds to catch up to Karen and play the knockout game with her. She's been in bed pretty much nonstop since early Tuesday evening. She's terrifically nauseated, her body aches, and she has a constant, brutal headache. Pain meds and more weed than your typical Phish concert have failed to make any kind of a dent in her, well, misery. We're hoping that the side effects will ease up after a few days but, to be honest, we are not terribly optimistic about that. The pattern--albeit over a relatively brief time period--has been that recovering from chemo gets about a week harder/longer each time. At least we'll have an idea if all this terribleness is worth the trouble in a few weeks: we've gotten her follow-up PET scan and MRI scheduled for the week of the 17th. We are both looking forward to and dreading the tests.

In other news, our home is not so much a Lifetime movie heartwarming story of quiet triumph starring Meredith Baxter Birney these days. As Miranda succinctly put it the other night, "It's so sad here. Everyone is sad all the time." And that's pretty much true. While we're not all glooming around with a personal storm cloud bobbing over our heads, there is a palpable oppressiveness that sucks the air out of the house more often than not. We try to be positive, we try to enjoy the time we have. We want to be the good cancer family. But it's beyond hard when one of us is essentially bedridden and not making any sort of noticeable gains. We've all lost our temper, lost patience with one another at least once. Except for Karen although I'd like to think now and again that she'd like to tear through us like a bulldozer with rabies just once if she could muster the energy.

I won't speak for the other denizens of the ward, but I will confess that even though these upsets are actually very rare I grapple with intense shame over it. I think we want to pull together but sometimes our nerves are so raw that we cannot bear to be touched, physically or metaphorically. And definitely not by Woody Allen. Ick.

And just so we don't end on that terribly downbeat note.....we are very excited that one Mr. Neal Rosen, my college/post-college roommate, will be dropping by for a visit starting this Friday. We intend to show him the entire Spoils of Babylon mini-series because it is comedy genius and I heartily besqueech you all to watch it.

Who Loves Ya, Baby?

So Karen's hair has started to fall out.

You call it "body hair," I call it "Sex Velcro."

Not a lot and mostly just in patches, primarily where the radiation was targeted, but it's definitely making a break for it, jumping off her skull and drifting over our pillows. Does it help that when she suspects a clump is about to go that she preemptively scissors it off? Probably not. Seriously, it's debatable how much of the hair loss is due to cancer treatment as opposed to being self-inflicted. But while Karen is certainly hyper-aware of the hair loss, you'd have to be actively looking for it in order to notice. Her hair looks pretty much the same until you start digging around her head like a chimp digging for fleas and stumble upon the empty patches. Still, she bought a couple of classic knit cancer hats from Target just in case it all goes. I guess the Rhoda-style headscarves won't be happening here.

The hair loss can be attributed not only to the radiation (which was concluded after five scalp-tingling treatments back on January 2) but to her second round of chemo this past Monday (the 13th). Like the last chemo treatment, this one left Karen pretty depleted and she's spent the majority of the week since in bed, sound asleep. As of today, she's starting to get more energy back and is up and moving around more (although that moving around is regularly broken up by extended naps.

So, yeah, the road ahead...

Karen will have a third round of chemo on February 3rd. This will be her first with Avastin so it's going to take longer and the addition of a new drug could also mean more or longer side effects. Sometime late in February, Karen will have an MRI to see if the radiation did the trick. There will also be another PET scan roughly around that time to see if the chemo is effective. It's pretty much just a waiting game at this point. And as a gaming professional I can confidently tell you that this is a pretty shitty game. Worse even than Daikatana.

Head Games

Here's the thing no one tells you about getting radiation zapped into your head: when you're done your face looks like you fell asleep on a waffle iron. This is not the result of the invisible death rays blasted into your noggin but rather it is the consequence of lying face down pressed into what is essentially a custom-designed hockey mask fashioned for the sole purpose of keeping you in one place so that your idle movements don't cause the radiation, uh, "beam" to drift into your phrenological combativeness region and render you a milquetoast for the rest of your life.

Up-to-the-minute aids such as this guide Karen's medical team.

Karen was a champ during her first radiation treatment today, stoutly forgoing breaks between cranium blasts in order to just get it over with and trimming at least half an hour off the expected treatment time. She's going to have four more SRS sessions over the next several days and will wrap up this portion of her treatment January 2nd. Then we'll wait to give the brain masses some time to either continue to blossom or stop their foolishness. Sometime several weeks from now, after the tumors have had time to show measurable growth (but ideally not) Karen will have another MRI to see if the treatment worked.

The same more or less goes with the chemo. That started last Monday, December 23rd. The process was pretty straightforward and over within a relatively quick couple of hours. This brevity in treatment time is largely attributable to the fact that Karen did not receive any Avastin. This drug is being omitted from her first couple of chemo rounds since it does not play well with brain radiation. The Avastin will be probably added to her regimen for her third treatment. Sometime after that, there will be another scan to see if it's working.  Let me tell you, there's nothing more secure and comforting than having two enormous life-altering variables completely up in the air.

Despite the uncertainty of it all, Karen is a remarkable trooper in the face of all this. Not that it's a breeze. Karen's energy continues to ebb and it looks like she is losing weight (we don't own a scale so we cannot be sure--we'll let our doctor visits sort that shit out...it gives us even more to look forward to!). While weight loss would usually be something she'd celebrate it's less than welcome in a cancer patient. That whole "wasting away" business is the sort of thing you want to avoid. The pain from the brain tumors is being managed very well with steroids (to reduce painful swelling), painkillers (to dull the pain), and weed (because why the hell not?..and because it helps). The other fallout from the brain masses, however, continues to be an issue. Karen at times struggles to find words and to remember things. It's maddening for her to be so confused. For the pack of  rabid weasels that are the Coffey clan, this particular development has afforded us a golden opportunity to develop our woefully lacking patience, as we wait for Karen to find her word or as we gently nudge her where we think she was trying to go. All that, plus she's getting a little unsteady on her feet.

The good news is every once in a while we have an evening like last night where Karen gets an unexpected second wind and she and I can spend an hour or two reminiscing On Golden Pond style about the last 23 years of marriage and the 35 years of friendship we've shared. We had intended to start taking these nostalgic trips about 20 or more years down the road but that timetable probably isn't going to work. It's been nice, though. Just way, way too early.

Pick Your Poison

My wife two weeks from now.

Bright and far too early at 8AM today, Karen and I ventured out to the oncologist. This would be our first face-to-face with Karen's doctor since all the brain-swelling excitement of the previous weekend. If there were any doubts that the mets in Karen's brainmeat signaled that we'd turned some sort of dark corner it was confirmed by our doc's heartfelt handshake and exhortation for me to "Hang in there." Apparently the ride we're in for is likely to be more than a little bumpy. The appointment was fairly quick, little more than a check-in and confirming that Karen was still on track for chemo. While we were there Karen's newest doctor, the sunny and charming Dr. Moini, phoned in that the results of yet another MRI had come in.

On Tuesday, Karen had undergone the other more detailed and far more coolly named MRI (3-Tesla MRI! That's right: Tesla! And not just one Tesla but THREE FUCKING TESLAS! Woohoo!) and it had revealed modestly good news: she had only the three tumors in her brain. That meant that she could undergone SRS, i.e. Stereotactic RadioSurgery. Basically, it's targeted radiation where they blast radiation at the tumors in the hope that their growth will be arrested (and maybe knocked back a bit). She will not have to undergo Whole Brain Radiation which is more or less a good thing since she'll need only 5 treatments with SRS as opposed to 10 to 15 with whole brain radiation. If they use gamma rays and she turns into the She-Hulk then we're winners all the way around.

The SRS also means that it can overlap with the chemo, proving once again, as I so presciently noted on Sunday, that I know nothing. That's slated for this coming Monday, the 23rd, just in time for Christmas. A little late to the Christmas party will be the radiation which will start on the 26th. All five treatments will be delivered daily, with breaks for weekends and holidays. This means she'll wrap it up on the 2nd of January. As noted in an earlier post, the initial chemo will last about two months or so. There will be PET scans and MRIs around the end of that to see if any of it is doing any good. Unless she's bench-pressing shipping containers and fighting intergalactic menaces, I'm likely to consider any outcome a bit of a disappointment.

While we're trying to be as ludicrously and unfoundedly upbeat at the prospect of Karen voluntarily poisoning herself in a number of different ways all at the same time, I'd be lying if I said that the Greek cancer chorus that has been quietly chanting in the background the last 12 months hadn't shifted into a deafening full-throated roar. We're playing catch up now. We were (marginally) ahead before but now we're about to get lapped. Of course we knew that eventually we'd find ourselves in this position but knowing that intellectually and actually experiencing that short-stop-on-an-elevator heart sink on a minute-by-minute basis is a whole other matter. It is difficult to watch your wife/mother/friend (because Karen rolls with a full-fledged entourage when she goes to the hospital) answer a series of questions that results in her sporting a disconcertingly cheery purple DNR bracelet for her stay.

STATUS UPDATE

• A follow up MRI has confirmed that there are just three metastases in Karen's brain. 
• The absence of other smaller masses means that Karen will undergo SRS radiation treatments which are targeted. Karen's radiation plan calls for 5 treatments on a roughly daily basis. These will start on December 26th.
• SRS radiation also means that chemo does not have to be delayed. This will start on Dec. 23rd.