A Nice Big Pile of Awful

Another hard day for me at Hit Detection HQ.

So the good news is that if I want to have a second career other than typing-monkey/joystick-jockey, I apparently show promise as a radiologist.

The bad news is that I got that little nugget of career guidance from our oncologist who confirmed my reading of Karen's most recent PET scan: her cancer is back.

Let's roll this back a bit. Last Thursday Karen had the scan and brought home the DVD with all the images on it. I loaded it up and quickly found a major area of concern in the lymph nodes in her neck. I also thought I saw some activity in her liver, as well, but that organ is a lot harder to read for a cancer hobbyist such as myself. Still, it looked pretty bad--if I was right and had noted the cancer's triumphant return then that meant that the Zykadia had stopped working and we were looking at Plan D. And boy oh boy nothing says Guaranteed Success quite like "Let's try our fourth best plan. And maybe the fifth just for fun."

While Karen decided she wanted to wait for the official word before she got to feeling all despair-y and thus she did not want to look at the scan or even really discuss it, she did manage to transform this sow's ear into a silk purse opportunity by realizing that if the Zykadia wasn't working she could stop taking it. The gastric side effects of this drug, while not debilitating, have been a beast; in fact, Karen skipped her Wednesday dose in order to ensure that she'd be able to lie still long enough to have the PET scan on Thursday. So with a possible reprieve in the wings, she asked me to call the doctor and ask, since the PET scan looked bad, if she could go off the drug immediately. Our next appointment wasn't until the following Thursday (which is still two days in the future of this posting) so she didn't want to wait a whole week.

I called. After relaying our tale, we were not told to stop the Zykadia but our appointment was moved up to Monday (which is yesterday in the timestream). Meanwhile, Karen decided to stop anyway. She's had "drug vacations" previously, so we didn't feel a couple of days without nausea and pain and everything was worth the risk, especially since I was certain there was no risk thanks to the PET scan.

So. Monday.

First off, I didn't make the appointment so please understand if there are some lacunae in the info following. I will try to find out more on our next meeting, this coming Thursday. There was some scheduling tomfoolery that popped up at the last minute and while I would have made our initial appointment time, I was stuck in traffic when we found out about our new improved time five minutes after the appointment supposedly started. Fortunately, Miranda was able to join Karen.

Another hard day for me in my chilly home office.

I stop here to mention that it's been pretty cold here so of course our heat went out and thus this has been a super duper extra-special couple of days. Our luck = PHENOMENAL.

Anyway, Dr. Sherman opened the appointment by asking "Who thinks they're some kind of radiologist?" He then added, "Because they're right." And then he confirmed that, yep, the cancer is clearly back. We didn't get a lot of details beyond the lymph node bit because the official radiology report is still being created, but this instance was so clear we didn't need to wait.

Happily, Karen could stop with the Zykadia immediately. Also, after more than a year of daily abdominal injections, Dr. Sherman decided to stop Karen's Lovenox shots in favor of larger aspirin doses to control possible blood clots. The shots have been a sporadic nightmare while the resulting bruises have been a consistent one. At this point, there is a heavy storm front of pooled blood spots in her stomach that are obscuring portions of the PET scan images. All of this was welcome news.

Less welcome was the rest of the news. Karen led off by flatly asking how long she could expect to live if she stopped all treatment right now. Sherman ventured that she would have about two to three months. BUT, he added, she was not at a point where she should stop treatment. She is still doing "relatively okay" he said and, he added, "You will know and I will know when we reach that point and we haven't yet."

Great. So what now? The immediate plan is a new kind of chemo that, just like the Zykadia a few months ago, was just approved by the FDA. That new approval could make the treatment tricky for our insurance to cover, but whatever. We will deal with that if we have to. Also, there is a clinical trial at Stanford for which Karen could be a candidate.

This all sounds good but there is plenty that doesn't. For starters, the doctor running the trial--who Sherman called during Karen's appointment--was unenthusiastic about Karen's suitability as a subject, given her specific treatment history. Still, Sherman and we will be pursuing this possibility to see if we can squeeze in. In the interim, Karen will start chemo again, but she will wait until after Thanksgiving since an ungodly number of family members will be joining us this year.

As for this new chemo, it is far from a slam dunk. It's called Cyramza (apparently these drugs are named in a manner that aims to be evocative of village names from bad, old-school RPGs). If I'm getting the information right from Miranda and Karen, then Karen will be getting just this drug and it will not be used in combination with another (Taxotere--do you see what I'm saying about these sub-Cudgel of Xanthor names?). This should make it more tolerable though it comes with all the classic chemo joys like nausea, hair loss, fatigue, neutropenia, and more including the potential replay of the hellish colitis Karen had with the last chemotherapy regimen. It will all be like a great big terrible reunion.

The big thing to know about this stuff is this: the response rate to the standard treatment (meaning the percentage of patients that derive any sort of benefit) is 14%. In contrast, the combination therapy has a response of 24%. These are not great numbers, especially that 14% one which, I believe, is the one we get. So, yeah, I'll be asking about why we're not doing combination therapy when we drop in this Thursday for our chemo tutorial.

I don't get it.

And thus we stumble into the holiday season. We are excitedly looking forward to our happily crowded Thanksgiving and, of course, the Festival of Pies two weeks after that. If you can make it for the Pies, I heartily encourage you to do so. Somewhere in there we will get an idea how the new treatment options are working. And we probably won't need a PET scan to tell since, with a 2-3 month survival window, I imagine Karen's symptoms or lack thereof will tell us everything we need to know about whether it's working or not.

And just so this doesn't bum you all out too much, here's an amusing little quote for you:

"Who's this Rorschach guy and why does he have all these pictures of my parents fucking?"

I love that joke. You're welcome.

STATUS UPDATE

• Karen's cancer has returned which means the Zykadia has stopped working. Thus, she is no longer taking this drug.
• Karen will start a new chemo regimen with a newly-approved drug, Cyramza.
• The response rate for this drug is 14% when taken alone as she will likely do. The response rate for it in combination therapy is a still-weak but better 23%.
• We are trying to get Karen into a clinical trial for a new med at Stanford. The initial reaction from those running the study was not that enthusiastic but we are pursuing this nonetheless.
• Without treatment--or in the event no treatments work--Karen is looking at 2-3 more months of life.
• Writing that last bullet point is a very efficient way to inject a little shot of hell into your day.

One Not So Fine Day

It would surprise you how unnerving a quiet night can be.

Karen has been doing very well with the Zykadia. Her energy, frankly, has been kind of startling. She’s out running errands just about every day, reading a lot, doing things with her church, hanging out with us past 10PM, and watching some truly sub-par television.

But throughout today and into tonight she did not do as well. From very early in the morning she was sick and her stomach was sharply and persistently cramping. So she ended up sleeping and sick in bed all day. She joined us for dinner and was back in bed before we knew it. If she was on her feet for two hours total today, I would be stunned.

It has been a day of sustained, dull suffering broken up by a few moments of relative ease. For us both. Seeing Karen languish all day was a terrible flashback to the grinding, bedbound wretchedness of chemo. We know that the Zykadia’s efficacy will most likely wane by the end of the year and that we will yanked back to those chemo days again. Actually, that’s not quite correct—we don’t know that the Zykadia will stop working so much as we expect it. We wait for it. We are actively waiting and watching for the first sign that, uh-oh, here we go. There is an unspoken diagnostic subplot woven through every day.

And now that I see all that written out I have to say that what is really rattling me is not that today is a look back so much as it is a nasty little peek into what lies ahead when the drugs—any and all of those motherfucking drugs—stop working and days like today will be the new version of good days, breaking up a relentless wash of awfulness with something small and miserable that miraculously feels like a respite.

Two years in and we count time in prescription refills, every call to the drugstore another uncertain step toward some cruelly foggy terminus.

Karen has a PET scan later this week.

Against our better judgment, we expect good news.