Insane in the Membrane

Sadly our big secret is not as exciting as The Count of Monte Cristo

Last night we hosted the 11th Annual Festival of Pies and had a great time. The house was stuffed with people who in turn were stuffed with 18 pies and 1 cake. I pinballed around all night socializing and being all host-y, more than a little bit punchy from not starting to bake until, oh, around 9 PM the night before. Miranda conked out around 2:30 AM but I plugged away until 4AM and then cranked out 4 more pies in the morning. This is not a schedule I particularly enjoyed and it is definitely not the one I had planned but these days our plans have a tendency to be rewritten on the fly. And the entity that tends to do all the rewriting is Karen's illness. That's what rewrote my baking itinerary and it's what gave our little soiree some undercover subtext because us Coffeys were all harboring a Count of Monte Cristo caliber secret through the whole thing.

So bright and far too early Monday morning we had our chemo consult at the oncologist's office.Karen had a headache after so she took some Tylenol or something and it went away. Then it came back. So she smoked some weed and it went away. Then it came back. She took more Tylenol and it was dulled but not gone. More weed, a few naps, and a few days later and the headache was there all day from the moment she got up and not responding to meds. She took some Vicodin and by the time our call to the oncologist was answered it was gone again. That was good, said our doctor, but if it got worse or persisted we were to go to the ER.

Friday at noon, Miranda and I began prepping to bake. Karen was in bed. The night before she was complaining about blurry vision and the headache. Her energy at this point was extremely low and her persistent nausea was not responding to the usual medical marijuana. Karen took another long nap, we got two pies finished, and when she woke up we shut off the oven, loaded her into the car and zipped her around the corner to the hospital. There was a CT scan and Karen was admitted to the hospital for observation and more tests. Later that evening Karen was full of painkillers that had nicely axe-murdered her headache. She was drifting off to sleep so I went home and strapped on my apron to bake. Sometime late that night she had an MRI.

The next morning I spoke with her doctor and our fears were confirmed. Karen now had three masses in her brain, the largest about 2cm cubed (maybe about the size of a ping pong or golf ball I'm guessing). The next largest measured about 1.5 and the third just wasn't putting in the effort to keep up with the others. So there's your headache. And there's your nausea, debilitating fatigue, and blurry vision.

Sid & Nancy approve of this new drug delivery method.

And there's your major spanner in the works. Short term, it was uncertain if Karen would be home for the party. Longer term, her treatment just got a whole lot more complicated. The short term hurdle was cleared relatively easily. After talking to her doctor with a head full of luxuriously lathered shampoo (I now carry the phone into the bathroom when I shower in case a doctor calls), she and the rest of the hospital staff became committed to finding a way for Karen to make her triumphant return to the Festival of Pies. A year ago, it seemed unlikely. With a host of new meds including better painkillers and a new blood-thinning prescription that requires me to give her a shot in her stomach twice a day, she was cleared for release. She was home by 5PM and when guests began arriving at 7 she was ready and raring to go, glowing with dilaudid.

Ideally, the metastases in her brain will be as easy to deal with as getting her out of the hospital. But that seems kind of unlikely. We will meet with our docs tomorrow to discuss treatment. Radiation seems most likely and she's already taking steroids four times a day to reduce the swelling in her brain caused by the tumors. The problem here is it's all but certain that she can only tackle one problem at a time (I'm saying "all but certain" because if I've learned anything over the last year it is that what you think will happen is not always what actually happens). Your body can't handle Bruce Banner caliber radiation loads and chemotherapy simultaneously, not without dissolving into a puddle of goo like that one bad guy in Robocop. That means that while we focus on one problem, the other is left to its own insidious devices. So while it seems most likely that we will be dealing with the brain because A) it's the freaking brain and B) it's causing the most problems for her, the growths that have sprouted up in her chest and neck are free to run amok until we can get around to chemo.

It is all just so much fun.

We will keep you posted. Unfortunately, it seems like my laggy ass posting schedule has the potential to become more frequent in the days ahead.

STATUS UPDATE

• An MRI has revealed three significant metastases in Karen's brain. These are responsible for her blinding headache. They are also probably the culprits behind her diminishing energy and persistent nausea.
• The largest of these is about 2 cm across in all three dimensions. It is smaller than a breadbox but bigger than you'd like a cancerous growth in your brain to be.
• New medications are better controlling Karen's pain and clotting issues.
• We will be consulting with our cancer team to determine the best course of action.
• Radiation seems the most likely treatment in the short term to deal with the masses in her brain.

Back in Black

Pro Tip: If your oncologist enters the examination room and announces, "So, Plan B" odds are the news you'll be getting isn't going to be the sort of stuff you'll want to highlight on your Christmas card newsletter.

Google "back in black"and you'll find this non-cancer related gem.

We met with Karen's doctor this morning to review the results of her latest PET scan. While we had hoped for continued good reports we were expecting pretty much what we got: she has stopped responding to the crizotinib and her cancer is back and progressing. Where previous PET scans were nice and clear the scan from Monday was dotted with black pools of tumors. Right now the spots are largely confined to the lymph nodes in the center of her chest with one adventurous little outlier homesteading in her neck.

The good-ish news is that Karen can immediately stop taking the crizotinib. She's really been battling nausea from the drug so this is welcome. The flip side of this is that she is now looking at chemo.

Our timetable looks like this. At the unholy hour of 8AM this coming Monday, we will meet our nurse practitioner to go over the chemo regimen in detail. She will likely start chemo soon thereafter. While Karen wants to wait until after the Festival of Pies (Dec 14) we will see if that's really feasible or not. If the doctor is urging her to start, then she'll be starting. This will be traditional intravenous chemo and she'll be imbibing a delightful cocktail of three drugs: Carboplatin, Avastin, and Alimta. These will be administered three times at 21 day intervals. After these three rounds of treatment, she'll have another PET scan to see if she is responding to the treatment. If it works, great. There will be more chemo and (ideally) she'll eventually move into "maintenance chemo" where she will take just the Alimta and Avastin. She can potentially do this for an extended period of time so that's what we're hoping for. We're talking about a period in excess of a year.

If the initial chemo is not successful in beating the cancer back into submission, we will try another suite of different chemicals to see how that goes. We're kinda hoping not to get to that.

So we are essentially right back where we were literally a year ago at this time, staring down the triple barreled shotgun of chemo. We were incredibly fortunate that 1) crizotinib was even an option and 2) the crizotinib was an option that totally kicked ass and gave us a year we likely would not have had. Median life expectancy at this stage is 12-14 months and since Karen was basically here 12 months ago she has more than beat the odds. We are hopeful that she can continue to do so.

STATUS UPDATE

• Karen' latest PET scans show that her tumors have returned and are growing once again.
• At the moment, growth is centered in her chest, primarily in the lymph nodes.
• This means the crizotinib is no longer an effective treatment and Karen can stop taking it immediately.
• Karen will now move to traditional IV chemotherapy. She will take a cocktail of three different drugs.
• Chemo will be administered three times, every 21 days. This will take two months and will be followed by a PET scan to determine if it is having a positive effect.
• If the chemo works, Karen will have a few additional rounds of treatment and will move into "maintenance chemo" for an indeterminate period of time.
• If the initial chemo does not prove effective, Karen will try a different blend of chemo drugs. 

The Sound of One Shoe Not Falling

Another month, another oncology appointment, another unexpected all-clear from the doctor. Karen is generally pretty optimistic about these appointments but even she went in this morning with a 70% certainty that the news would be bad. Seriously, we all (Miranda joined us again) headed into this appointment expecting that the cancer was back. Karen's energy continues to ebb, she's been coughing for about a week, and she's well past the expiration date for the crizotinib's expected efficacy. And yet her labs were good to the point of excellent and her physical exam was just as stellar.

It was great news. And it was also kind of infuriating. I'm no Tom Petty fan but he had a point about the waiting being the hardest part. We all know that eventually things are going to go from bad to fucking awful and that that time is sooner and not later. So we keep steeling ourselves and bracing for the bad news. It's a cruel tease that leaves us in a state of excruciating suspension. While the One That Knocks hasn't rapped on our door yet we know that bastard is milling around on the doorstep so why won't he just fucking knock already and get it over with and stop screwing with us? Of course, none of us actually wants that knock to come because we know what the unhappy reality of that is and thinking that way plunges us into a swamp of guilt. I personally dunk myself in that guilt goo daily and it's pretty hard to wash off.

Anyway, we've gotten another happy reprieve. Karen definitively has another holiday season ahead of her and that's great. There's another appointment in a month along with another PET scan and another chance to hate ourselves for wanting something we don't want.

At least we can be happy for having something we do want. Another Thanksgiving, another Christmas, and another Festival of Pies with Karen and an intact nuclear family.

Holding Steady

We've been silent for about a month here because there's been really nothing to report. Karen's doing about the same and if anything she might be having more good days and better energy (apparently not working agrees with her). We had our monthly appointment today and in spite of the less-than-stellar recent PET scan, her blood work checks out and has barely moved. So we just keep doing what we've been doing.

Classic no news is good news scenario.

Hot Hot Hot!

Me mind on fire! 

The results of Karen's PET scan came in yesterday afternoon. Of course, the doctor called while I was out riding my bike so I was not around to ask questions and get things clarified. Karen is a whole lot of very nice things but a rigorous inquisitor of medical info is not one of them. So while we've got some new information, we don't have an especially firm grasp on it.

So the good news is that the cancer does not seem to have grown or spread. It has not re-bloomed and started taking over new or even old territory. That is indeed positive news.

Me soul on fire!

On the other hand, the scan does show "hot spots." I don't know where because no one asked but I'm assuming right now that they are most likely at the same sites where Karen had growths before. As a point of comparison, Karen's PET scans of a few months ago showed no "hot spots." All the sites where there had been activity had gone cool and were not lighting up the scans.

What does this all mean? Well, I won't be able to get a definitive answer until our next appointment on Friday, Sept. 6. Short term, we keep doing what we're doing, i.e. taking the crizotinib and keeping things at bay.

But what are these hot spots and are they are cause for concern? Since I still haven't managed to secure my medical degree (or pass the bar or get my gold medal in women's powerlifting and by that I do indeed mean powerlifting females not barbells) I'm not super-confident about how to characterize these things. What I've been able to glean from the Google Webs, is that they are reflective of potentially cancerous activity (to be 100% certain, a biopsy needs to be done). That said, a biopsy is kind of moot in this case: you need to biopsy more when these things first appear. It's like having a bear break into your cozy mountain cabin and shit on the floor. The first time it happens, you have to test the shit to figure out what did it. The second time, well, you're pretty sure it's just that same asshole of a bear befouling your alpine retreat. You could test the crap again, but do you really need to?

Feeling Hot! Hot! Hot!

So while the cancer has not spread as of 9:30 Thursday morning, the bottom line is that it seems to be revving up again. The hot spot is indicative of something that is metabolically active. This certainly explains why she's been so fatigued: there's a real tug-of-war being waged in her body right now. It also probably means that we are about near the end of this leg of our cancer relay and will be handed the chemo baton sooner rather than later.

STATUS UPDATE

• Karen' latest PET scans show no growth or expansion of her tumors.
• The PET scan does show some "hot spots."
• The hot spots are indicative of metabolic activity. This activity was not present in previous scans.
• For now, we stay the course and treatment does not change.
• Our next oncology appointment is this coming Friday, Sept. 6 and I hope to have clearer if not actually better answers at that time.

Early Retirement

Alas, no gold watch awarded for this early retirement.

Tomorrow, after a lifetime of exercising a commendable work ethic, Karen will not be going in to Wells Fargo. Last week, after struggling every day just to make it to the front and coming up short, Karen didn't have the strength to make it to the office. Even on her work-from-home days, she lacked the energy even to log in and answer emails. By Thursday the writing was on the wall and Karen made it official on Friday: she'd be going back on disability and would not be going back to work for, well, probably ever.

It feels right. We waited far too long the first time around for Karen to go on disability. Looking back, I have no idea how she was making it in to the office back in December/January. We didn't wait that long this time: there's just no upside to her pushing herself like that. We are comfortable with this decision.

Which does not mean that we're all that happy about it. While Karen is looking forward to being around the gaggle of misfits that comprise our immediate family, it's hard not to see this as a small defeat. After several months that were largely characterized by an earlier bedtime and the transformation of our bedroom into something that smells eerily reminiscent of my old NYU dorm room thanks to the glory of medical marijuana, the cancer has started chipping away at her life again. It has reasserted itself as a presence in our lives and that pretty much sucks. It is probably here to stay now.

This does not necessarily mean that her meds have stopped working. She's having a PET scan next week that will give us a clearer (and literal) picture on that front. But I'd be lying if I didn't say that there's an undercurrent of dread now. Over the last couple months we've been waiting for the crizotinib to lose effectiveness and her fatigue and occasional difficulty breathing really seem to indicate that we're nearing that milestone. We don't look forward to what lies ahead if that is indeed the case.

Karen Is a Bad Doctor

If Karen were a doctor, she'd be Dr. Giggles.

And after our first bi-weekly appointment to keep extra tabs on Karen's condition, we are moving back to monthly appointments because while Karen has indeed been feeling more worn out, it does not seem to be the result of her cancer roaring back but rather a muted encore performance of her initial crizotinib side effects. With labs and everything indicating that she's still doing well (including the intermittent facial rash that is a drug side effect) there's no reason to show up every two weeks at the oncologist's. Meaning there is no good reason to wake me the hell up so freaking early twice a month. So we will just keep plugging away and hold off on diving into the chemo pool for at least another month.

This being said, everyone is pretty clear-eyed about the fact that the crizotinib will most likely lose efficacy fairly soon. With that in mind, she will have another PET scan near the end of August to see how she's doing. And with the probability that chemo is not too far distant, there are some other things going on.

Specifically, there will be changes at work. Wells Fargo has started to look into hiring a replacement for her and, in fact, Karen is interviewing candidates. She will be moved to something that used to be called "Special Projects" at my old job at Ziff-Davis. While I personally like the way it sounds that she is cleared to build and construct a death ray I'm sure it is much more mundane than that.

Not as mundane was the start of this transition at work. Earlier in the week Karen had a meeting with her immediate team members to let them know that Wells Fargo was starting this process. It was a small group and it was pretty quickly awash in tears, with some members needing to excuse themselves from the room temporarily. Karen has been incredibly fortunate to work with such great people, people who have become real friends and that truly care for her. The downside is it makes this transition a whole lot more difficult.

In the meantime, we will continue to enjoy the parade of visitors. Next up: the Agnelli/Ferrante clan who arrive tomorrow! Frankly, considering the air miles Karen's illness has generated, I think we're due some kind of discount from the US airline industry.