Drip Coffey

And back we go to chemo!

This is the tool most necessary to settle physician disputes.

Today was the fifth of Karen's six scheduled treatments and it went much better than the last one. Most probably because our oncologist pulled one of the drugs from the infusion: Avastin. It was during the Avastin portion of her treatment three weeks ago that Karen began experiencing the pain that signaled the galloping arrival of her colitis. Now, while the GI guy who treated Karen at the hospital full-on blames the Avastin for everything our oncologist, Dr. Sherman, is less definitive. And we kind of knew that was coming because Dr. GI Guy basically told us that "Your oncologist won't believe this."

And Dr. GI Guy was right. Sherman was kinda dismissive of the idea but he still pulled the Avastin because, well, it's complicated. There is no real correlation between plain old colitis and Avastin but the drug does affect your blood vessels (it fights cancer by killing off and preventing the growth of new blood vessels that spring up to keep the tumors fed with blood). Therefore, there is a slim chance it can cause ischemic colitis by killing the blood flow to the colon. Also, there's a chance that a blood clot--and Karen has a history of clots now--could have caused it as well. And thus, no more Avastin just to play it safe.

That better safe than sorry approach was just fine with Karen. While chemo is stressful under what you might laughingly call "ideal conditions" it's a lot more stressful when you're afraid it's going to knife you in the guts. Karen started dreading today's chemo a few days back, worried that she'd have a repeat performance of Treatment Number Four's ugliness. Not so today...she napped through most of it while I worked on my laptop next to her.

So now we wait. In three more weeks Karen will have that last infusion and sometime thereafter she'll have a PET scan to see if the chemo is doing any kind of good. If so, she'll transition to maintenance chemo which will be just one drug (Alimta) pumped into her every three weeks.

In anticipation of that, Karen is likely to get a port installed. There's a picture of what a port looks like just over there. Take a peek. This lovely apparatus will allow the docs to more easily deliver drugs into Karen whose veins are just about shot from all the IVs and blood draws. It will also bring her one step closer to becoming a cyborg so that's pretty awesome. Unless she goes rogue and kills us all. Less awesome, that.

Gut Response

Bright and early Saturday morning, Karen shook me awake and asked me to take her to the Emergency Room. The abdominal pain that had struck during chemo on Monday, while it had subsided in the near term, had begun to reassert itself aggressively and Karen had been unable to keep food down or in for about two days by the time Friday rolled around. Eating caused tremendous pain and even drinking a glass of water was agony, followed by near-immediate vomiting. After being up most of the night, she'd had enough and called our oncologist who told her to head to the ER.

After a CT scan it was postulated that Karen was suffering from a pretty significant case of colitis, with inflammation in both her transverse and descending colon. She was admitted to the hospital for observation and more tests, including an absolutely delightful colonoscopy Sunday morning. That confirmed the diagnosis. Karen stayed in the hospital another day and returned home Monday afternoon. Once it was clear that Karen was going to be okay and that it wasn't really necessary for me to be around, I left for a business trip and let Miranda and my parents (who were scheduled to visit already in order to care for Karen while I took this trip) collected her from the hospital.

So what does this all mean for her treatment? You got me. We'll be talking to the oncologist once I get back. But there are reasons to be concerned. This kind of inflammation and internal bleeding is associated with two of the drugs in Karen's chemo cocktail, Avastin and Carboplatin. Most likely she cannot continue with the same chemo regimen and will need to change drugs, alter dosages, suspend treatment, or outright end it. I honestly have no idea. For the moment, there's no urgency: she's not scheduled for another infusion for two more weeks so nothing is/was going to happen over those 14 days anyway (which is why I was free to travel...obviously if there were immediate concerns I would have stuck around).

This shit just never seems to stop and it is, to coin a phrase, a right fucking drag. But we soldier on and I have to say, everyone does seem to have a pretty good, resilient attitude about it. Especially Karen.

The most unsettling thing about this recent incident? Late Sunday night I headed to our bedroom, brushed and flossed, then settled into bed to watch "Girls." I laughed out loud and reflexively tried to swallow it lest I disturb Karen's sleep. And then I looked where she should have been and she wasn't there and it was incredibly unsettling. I had the bed to myself. I thought to myself, "So this is what it's going to be like" and it was like living in the present and the future simultaneously and it was just kind of awful.

We should know more about the road ahead soon, ideally sometime on Friday.

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.