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.

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.

No Clever Title

Try as I might, I'm not having much luck coming up with titles today. This is frustrating because I was asked to think about game titles for work today and I totally drew a blank. Similarly, I'm drawing a complete blank coming up with something delightfully witty for this post. And that lack of a slyly humorous title is holding me back from finding an appropriately inappropriate pic to post alongside the text. Here's hoping all of you (and my co-workers) can manage to overlook this shortfall this time around.

After a few months of visiting the oncologist on a once a month basis, Karen is going back to biweekly visits. Our last appointment was just last Thursday. Her blood work was fine and Dr. Sherman didn't find or hear anything concerning during her physical examination. So that's good. However, Karen is increasingly finding herself short of breath. She runs out of breath if she talks awhile and if she exerts herself which these days means just walking for a bit. For the last week or so she has been making an obvious effort to conserve energy, sitting still and breathing very deliberately and limiting her speech. If we're out walking around like we were over the weekend at the Monterey Bay Aquarium she takes frequent rest breaks.

Karen believes the crizotinib is starting to lose its efficacy. We are on the cusp of her eighth month on the medication which is when people can typically expect it to stop working. The rash on her face--which is a side effect that indicates the drug is murderizing cancer--has gone. Her fatigue is worse. And there's the trouble breathing. So we'll be seeing the doctor every other week now to keep tabs on it.

It's not a great development but we are trying to keep our heads up. After all, we were convinced it had stopped awhile ago and everything was fine and the trouble she was having then cleared up on its own. This time, the difficulty does not seem to be going away.

The good news is that our action-packed summer continues apace. My college roommate Neal Rosen and his wife and son just spent a week with us and it was simply fantastic. If there's an upside to this cancer business it's that we have been blessed to spend lots of time with people we care deeply about and who apparently are fond of us as well. More New Yorkers are coming in two weeks (the Ferrante-Agnelli clan) and there will be family as well in August, with one of Karen's sisters visiting and with Miranda and I going to Oregon mid-month to see my sister (and maybe meet my other half-sister).

I'll post updates as they develop. Unfortunately, it looks like they might be coming more frequently now. Here's hoping the headlines can keep pace.

Baked Alaska

And so we have successfully returned from a week cruising the atypically sunny and warm shores of Alaska.

Not the Alaskan bear we saw.

Karen's Glorious Bucket List Cruise of Doom was a success pretty much all the way around. Since we didn't go on a Carnival cruise we were spared the indignity of defecating in the hallway. This made the cruise much more enjoyable. I must admit that while I still don't particularly care for cruises and did at times feel trapped on the boat, I did basically enjoy myself. Winning $300 at blackjack helps. Absolutely crushing a roomful of strangers who mistakenly thought they were participating in a couple of lighthearted trivia contests and not a bloodsport really helped. Not that I'm pathologically competitive or anything.

Karen had a great time and the trip was everything she hoped. She saw a glacier "calve" from the helipad on the bow of the ship, witnessed a whale breaching just a few yards from her whale watching boat, and even got to see a bear in the wild during our visit in Skagway. The entire thing was relentlessly documented by Karen's sister, Liz, who took a photo every time she inhaled. The kids had a good time as well, including, however improbably, Dash, who made a bunch of friends and kept so busy we hardly ever saw him. He spent the final night at sea lounging in a hammock with twin sisters.

And now we're back and work starts again tomorrow (except for the kids who actually had to return to work about 12 hours after we got back home). Karen is feeling well, we've got more friends and family lined up for visiting and except for the hellish heat things are pretty good.

If it weren't for the cancer this would be shaping up to be one of our best summers ever. It's still not too bad.

Still Boring

This morning Karen had another oncology appointment and, just like the last one, it was pretty freaking dull. Huzzah! No news is definitely good news when it comes to lung cancer and Karen is excelling at failing to be newsworthy. So things don't change: she's staying on the same drug regimen, staying on the same activity level, blah blah blah.

The only Palin we really want to meet.

While her level of activity is going to remain the same, the actual activities will be changing in the short term. Tomorrow we leave on Karen's Glorious Bucket List Boat Trip of Doom to Alaska. I will be lamenting the lack of Internet access for the coming week (except when on land).

We might bring back a Palin baby. Or three. They've got lots, right? Who knows.

Remarkably Unremarkable

Your PET scans bore me, darling.

"Boring is good." That was the informed opinion of Kathy, our nurse practitioner, during this morning's oncology appointment. This was not an assessment of Karen personally and certainly not one of me--I had just cracked up the nursing staff with a Noel Coward-caliber rectal thermometer gag centered around the punitive application of a digital thermometer with the added bonus feature of a word picture describing Karen standing up and grasping the arms of a nearby chair. When it comes to sly, nuanced wit, I am the undisputed king.

At any rate, the real cause of all the boredom were Karen's PET scan results. She'd had the scans done earlier in the week and they showed continued response to the crizotinib. In fact, they looked just the teeny tiniest bit better than they had last time around in February. We were extra delighted because Karen has been feeling more tired of late and has had some shortness of breath. We, frankly, were expecting bad news. So it was fantastic not to get any. To celebrate we will be getting our Living Trust drawn up tomorrow because we know nothing says PARTY like making a will.

It Beats Eating Live Scorpions

Behold the muscle-bound Stuart Smalley.

Our friend, quality American, and all-around good guy Ken Brown works at Nvidia and thanks to the completely arbitrary nature of the universe he had occasion to chat up UFC commentator and Fear Factor torturer Joe Rogan just the other day when he visited the Nvidia offices for a new show. Ken told Joe that he knows of him primarily from seeing the UFC at my house and that we all thought that Mike Goldberg was kind of a tool. Joe smiled knowingly.Perhaps this was the moment when the mighty Joe Rogan's heart softened just a little. In short order Ken filled in Joe on what we've been dealing with since November and Mr. Joe Rogan grabbed up a piece of paper and wrote the following "Karen, Never give up, never stop being positive, and never stop searching for a way out of this! Best of luck & love to you...Joe Rogan." It's not the most poetic thing in the world but they are tender words indeed coming from the sort of man that gleefully encourages others to drink donkey semen. And donkey urine. And God knows what else.

Karen had had a kind of rough weekend so finding out that Joe Rogan didn't want her to die was kind of nice.

When Karen gets to work on Monday, that sucker is getting taped on the wall.

Heart to Heart

So last Friday Karen had her monthly oncology check-in. While I had managed to recover from the jet lag heaped on my head from my work week in Frankfurt, I had not recovered from the metric ton of insomnia that took its place. I'm all for staying up until the wee hours of the morning but when the wee hours have actual daylight in them even I feel I've gone too far. But Friday morning, ah, it was great, I was sleeping so well. Then Karen woke me up and said it was ten minutes until her appointment and did I want to come and why don't I just keep sleeping since nothing ever happens and I said Okay but call if there's news and I'll join you asap and I went back to sleep. But not really. She left, I woke up, I had some coffee, and there was news and she didn't call me. So I won't be stupidly sleeping through these monthly check-ups anymore.

These aren't the hearts you're looking for.

So the news wasn't huge but it was this: Karen seemed to have developed a heart murmur. And the tumor markers in her blood work had risen which would imply that the cancer was coming back. Or, actually, maybe not since she has seen these markers bump up a couple of times before and it was confirmed by PET scan that all was well. Or well enough, anyway.

The heart murmur apparently demanded immediate attention. Both the cancer and the meds she is taking could potentially have an adverse affect on her heart. Which is wonderful because if you're essentially a pinata stuffed with cancer you don't really feel complete without a damaged heart. An appointment was set for today (Monday the 6th) for an echo-cardiogram to see what was going on with her heart. Happily, Karen already had planned on taking the day off work since her step-sister, the delightful Bridget David, was visiting. The three of us squeezed into the small examination room as a delightful little man in need of a more delightful big shower conducted the test. We will have to wait for a cardiologist to weigh in officially within a week or so but the technician said he didn't see anything to worry about.

As for the cancer markers. The docs at Contra Costa Oncology aren't terribly concerned since Karen has a pattern of having them fluctuate. That being said, I'd feel better with a more definitive assessment and as luck would have it Karen is scheduled for another PET scan on the 21st. We've reached the theoretical mid-point of the crizotinib's efficacy so it's time to take a look and see how she's doing. Ideally, we'll hear back from the doctor within 24 hours of having the test done.

In the meantime, we will bid a sad adieu to Bridget when she leaves Wednesday morning and then bid a fond bonjour to my parents who'll be staying for the weekend in order to observe the fiasco that my birthday has become. And of course, my mother's birthday the same day. And Mother's Day. And probably some other holiday.

I'll post more news when it happens. Which, hopefully, won't be for a long long time.

And Thus April Draws to a Close

Ah, spring is in the air! That can only mean one thing: our self-imposed visitor moratorium is about to end. We've got people lining up to visit over the next few months and that should be fun.

What else is fun: eating at the French Laundry. Karen and I had a great time and enjoyed every single second there. Three hours shot by like nothing. At lunch at Bouchon the following day, we were surprised when a couple of our absolutely phenomenal NYC friends had our waitress drop a fat gift certificate on the table at meal's end. We went to the Bouchon bakery next door where Karen blew the whole thing on an obscene amount of pastries and such that we brought home and shared with the kids. Was it Karen's best birthday ever? I believe so.

What ain't fun: I'm not going to Coachella. A series of work disasters prevented my traveling companion from being able to go and Dash is off the Coachella table since he absolutely cannot miss anymore school. So that whole last post about looking forward to things? Not so much for me right this second. I will be leaving for scenic(?) Frankfurt, Germany for work this weekend where I will thrill to the sights and sounds of an office building and hotel room.

There's not a tremendous amount of health news to report and that's basically a good thing. Karen's leg is still swollen but not so much and not so painfully. She should be having another PET scan sometime in May. In the meantime, we just ordered Crizotinib refill #5 today.

Anyone that wants to visit or just drop by to be social, we would love to have/see you. Drop me a line and I'll add you to the dance card.

Looking Ahead

So until a good friend pointed out that I hadn't updated this blog in about a month I had no idea it had been that long. And I tend to think of that as a good thing since the whole goal with this thing was just to update it when there was "news." Happily, there's not much to report right now. Karen continues to do well although she is pretty sick of her leg being swollen from the blood clot. It looks more and more likely that the clot is going to take the full three months to dissolve that our doctor said it might.

But other than that....nothing much is going on in terms of medical facts and whatnot.

Still, there are things going on around here. We are looking forward a lot. Our lives have been filling up with things to do. Karen and I are going to the French Laundry on Thursday, I've got Coachella next month, my parents will be up in May for my and my mom's shared birthday, and then in June we have that Alaska cruise. Having something good to look forward to is a real boon because it takes our focus off all the other things ahead of us.

Things like: Karen just got her fourth bottle of crizotinib. This means she is entering the approximate midway point of this drug's efficacy. Every biohazard-bagged bottle that comes ticks us closer to the 8 or 9 month mark where we can expect the drug to stop working. Having good things to look forward to muffles the giant countdown clock ticking away in the background. Not that we need BIG LANDMARK EVENTS to make things nice. I don't know that we've enjoyed an evening more than the one a few weeks ago when our good friends the Salvators came by with deep dish pizza for a night of laughter loud enough to frighten the entire neighborhood. We'd love more nights like that so feel free to invite yourself. You don't even need to bring pizza.

Bigfoot Discovered!

Not the bigfoot we found.

Karen began hobbling around the house Monday evening, complaining that she must have pulled a muscle in her leg. Because there is nothing I enjoy more than telling other people what to do, I asked her to remove her pants and get on the bed. Unlike all those girls in college that ran screaming from the room, she complied. I examined her legs and quickly came to the conclusion that her left leg was swollen from the knee on down to her now much bigger foot. Once Karen confirmed that she didn't recall being bitten by a rattlesnake, we called the doctor. An ultrasound was scheduled for this morning (Wednesday) after Karen cajoled the doctor into letting her go to work for important meetings on Tuesday.

Unfortunately, the ultrasound revealed that Karen had a pretty significant blood clot in her leg. This is almost certainly a side effect of the crizotinib and it sucks. If the clot were to break free it could bob along her bloodstream into her lungs and cause a pulmonary embolism which really isn't even half as much fun as it sounds.

The kind of ultrasound we're used to getting.

So now Karen is taking blood-thinning medication to dissolve the clot and prevent new ones. She's going to be taking Warfarin starting right now and will continue to do so for at least three months to be sure the clot is properly deadified. In addition, she'll need to have a series of 3-5 shots of Arixtra over the next several days as well in order to quickly get her blood thinner. And while she couldn't have any grapefruit with the crizotinib, she REALLY can't have it now with  Warfarin in the mix. Luckily, we don't generally eat grapefruit. Like kindergarten gerbils, we prefer to eat our young.

STATUS UPDATE

• Karen has a blood clot in her left leg that has left it swollen and somewhat painful.
• The blood clot is most likely a side effect of the chemotherapy drug she is taking, Crizotinib.
• For at least the next three months Karen will be taking Warfarin, a blood thinner.
• For the next 3 to 5 days, Karen will get a daily injection of Arixtra to more immediately "fix" her blood.

Smaller is Better

We heard from Dr. Sherman this afternoon regarding Karen's PET scan from last week. Karen didn't want to wait to find our her result until her next appointment at the end of the week and had asked the office if someone could call if they got a chance.

So the news is all basically good. The mass in her lung is showing a marked decrease in size. Her lymph nodes are getting better and the spots in her liver have seen a reduction in size as well. There is also evidence of an overall reduction in activity. This confirms what we already believed: she is responding well to the medication. Although she could have had an even stronger response, this is still really good news.

I gave Karen this news while she was at work for the second week. Things in cancerville are looking up.

Working Class Hero

It's been almost three months since we got Karen's diagnosis and we've come a long way since then. Back in November/December Karen was struggling to take full breaths and was terribly weak. Today, she went back to work, riding in on BART and even hoofing it up a set of stairs when she found the escalator wasn't working. She worked a full day, came home to a lovely dinner of homemade spaghetti and meatballs, hung out with the family, and went to bed at her new bedtime of 9PM. Unless the roof caves in or I once again attack her in my sleep (and that's only happened twice), she'll be going back tomorrow.

Our working girl returns to the office with a great new 'do.

It's pretty remarkable that she's managed to reclaim her spot in the day to day world. Back around the New Year she had virtually no energy and we both thought her working days were behind her. Since then she has made remarkable progress, especially over the last week. Knowing that she was gearing up to return to Wells Fargo, she stopped taking naps and stepped up her activity, pushing herself to do a little more each day so that she would be prepared for today. Her oncology and pulmonary appointments this past Thursday went well and she was cleared by both doctors for work. Assuming that the results of her PET scan later this week go well she will be scaling back her oncology appointments to monthly check-ins. The crizotinib is really doing its job but I think Karen really deserves the credit here. This was something she really wanted and she made it happen.

Not that she was the only one that wanted her back to work. Arriving at her office this morning she was greeted by a handmade red carpet leading to her office, an office filled with balloons. She's fortunate to work with a great group of people that really care about her.

Here's hoping the PET scan on Thursday is fantastic.

Ship of Fools

And so the easing into a more ordinary day-to-day existence continues. Karen's energy, after about a week where she seemed to be going backward, is maintaining its steady momentum toward something more robust. As a result, Karen has committed to return to work this coming Monday, February 18. She'll be spending some days working from home but on that day she'll be braving the actual commute in to the office. Initially she had targeted the 15th for her return but not only does she have an oncology appointment that day, but I'll be out of town for work. After some deliberation, she decided she'd prefer to return to work with me in town just in case it doesn't go absolutely swimmingly.

You say "cruising" and this is what I think of. 

And we have committed to that freaking Alaska cruise. I am trapped. Deposits have been made and cabins have been secured. And while we have never splurged on travel insurance before, we ponied up the extra cash this time because, c'mon, wouldn't you? The trip should be an absolute nightmare like all cruises are and Karen cannot wait.

Next week we will be hitting one of our first big milestones. Karen has a PET scan slated for the 21st that will give us a literal look at the state of her disease. We've got evidence the crizotinib is doing its job since she's breathing better and her energy is rebounding but the scan will really let us know how all the tumors are doing.

Although the state of the tumors is unknown, the state of the Coffeys in general is clearer. We're all doing pretty well and are welcoming the return to something approximating normalcy. Dash has been terrorizing innocent people on BART with this creepy artificial hand, Miranda is working out in the most hilariously inept way imaginable, and I'm especially looking forward to March since we have issued a moratorium on visitors for that entire month. Finally, I don't have to feel guilty about puttering around in my sleep clothes well past noon.

Carpe YOLO

Karen's oncology appointment yesterday went pretty well. Her energy has been getting better daily, the nausea is more or less under control, and her coughing and shortness of breath are gone. She's not taking and pills or cough syrup at all, either. All of this led Dr. Sherman to opine that this is sound "clinical evidence" that the crizotinib is working although we'll have to wait until she has her scans done at the end of the month to get actual proof that it's working.

Since it's working, it's reasonable to assume that she should enjoy the 8 - 9 months of effectiveness the drug averages for its users. Following that, said Dr. Sherman, there's a chance she could respond to "maintenance chemotherapy" that will buy her much more time than the few weeks or two months we thought chemo would get her. Granted, there's only something like a 40% chance this'll work but still...we took it as good news.

So we left the doctor's office feeling pretty optimistic. Karen is feeling well enough right now to accelerate her plans to return to work. Instead of waiting out the month, she's shooting for a February 15 return. She really wants to get things back to normal and we're all onboard for that.

Still, we have adopted a more aggressive stance on doing things these days. We're not putting stuff off the way we did when our inevitable mortality seemed a more far-off prospect. For instance, I decided--after long ago giving up trying when my efforts were insanely fruitless--to try to get a reservation at the French Laundry in a bucket list kind of way. I called the restaurant and was totally prepared to use the cancer card in order to maybe secure a better spot on the waiting list. What happened instead was they had a sudden opening and we got an actual reservation. On March 28, no less. Which is Karen's birthday. So that's kind of awesome.

And Karen got me a pair of tickets for the second weekend of Coachella this year. To be honest, I balked at first. The money involved kind of freaked me out and I didn't really feel that right now is the time for me to be running off to do the things that might be on my Things To Do Before I Die List. But it was on Karen's--she really wanted to do something for me and it would be pretty ungracious of me to turn this down. So I'm going. Not sure with who yet, but I'm going.

And all of this means we are probably almost 100% certain to go on that damnable Alaska cruise. Oh well.

Lab Rat

I've been doing some digging around on the intarwebs to see if there's something more we could do to alleviate Karen's fatigue. Here's the thing: completely unscientific anecdotal testimony from other lung cancer patients that have taken or are taking crizotinib have done so for nine months and longer. One guy has been gulping down those $6000 a month pills for two years now. Now granted, this is completely unscientific and is far from being a representative field but...nine or more months is an awfully long time to be lying around the house without the will to do much more than pick out the day's pajamas. So we are embarking upon a science experiment. Unfortunately, unlike the Great Unknown Drifter Project of '09 I won't be able to do any dissection nor will I get to spread  lye around  my crawl space. But it still should be interesting.

Specifically, Karen is going to try not taking the compazine she's been taking twice daily to deal with nausea from the crizotinib. Fatigue is a possible side effect from the compazine so it's possible that's the true culprit here. If we can deal with the nausea in some other way (or if it's just become more tolerable) and this is indeed the cause of her fatigue then Karen could be back at near to full strength soon. Maybe. Who knows. But it sure beats sticking our thumbs up our asses if only because, you know, we always end up needing to use those thumbs to handle our food.

Our ultimate goal. For Science.

Why would we think this would work? Who died and made us Kings of Science? No one. But based on the same completely anecdotal and nonscientific evidence I have gathered from an online lung cancer support group I joined simply to poll about the fatigue, this has worked for some. Most of those guys didn't have any fatigue (just a lot of constipation and diarrhea though obviously not at the same time). Also encouraging us is the fact that Karen's energy does definitely seem to be making a comeback. She was awake all day today which sounds like more of a milestone for a preschooler than a grown up lady woman, but trust me on this. It's a marked change.

So here's to science. We're just a couple of dreamers, like Anthony Michael Hall and that kid that looked kind of like Ralph Macchio only he wasn't actually Ralph Macchio. If this works, we're going to venture into some Weird Science territory to make things even more interesting around here.

Holding Steady

It's been a week since I last updated this blog and there's not a tremendous amount new to report. Karen's energy does seem a little bit better of late which is encouraging. It's possible now that we're hitting the four week threshold with the crizotinib that she's easing into the 4-6 week window where maybe her side effects will start to diminish. That said, some days are better than others. Yesterday she felt energetic enough to venture out into the world for an hour or so and we test drove a car. Today, she rested a lot more. That is how it seems to be going for now: a day where she can handle a bit more activity followed by a day or so of recovery. At least the nausea has eased up some.

The rest of us are doing pretty well. Miranda got rid of her money pit VW and traded it in towards a newer, more reliable Corolla. She's taking on more hours at the bakery which is good. Dash is beginning to dabble with Krav and may start taking classes. And I'm working, writing, and spinning all sorts of plates.

Karen has a big blood draw next week followed by an oncology appointment on Feb 1. We may have more to report then.

Maintaining Altitude/Attitude

Another day at the oncologist! Huzzah!

My friends call me New Normal.

What to report? Eh, not all that much. Karen has lost three pounds since our last appointment which isn't great but not a cause for concern just yet. While she's on one level happy to be shedding some weight, basically we want her weight to stay the same as when she was diagnosed. As Kathy, our NP, put it, this is her "fighting weight." I of course related to that all too well.

Karen's fatigue is slightly better but there are good days and bad days. We are keeping our fingers crossed that she can get back to something closer to full speed and resume working, even if just from home. We explained this to Dr. Sherman and he told us if that's our goal, then he's going to do whatever he can to make that happen. That said, he added, we may want to consider that we have (and I shudder as I type this suddenly terribly overused term) a "new normal" and should adjust our expectations and lifestyle accordingly. If we want to go live in Hawaii, he said, now's the time. Do the things we want to do. So we kind of are, although that doesn't include a move to an island paradise where I'm likely to go all Travis Bickle in a week.

What we are doing is slightly altering our general approach. While we're still going ahead with super-exciting happy fun things like finally writing a fucking will, we are trying to focus more on the day to day and less on the end. We know the end is coming but we don't know when. Some people have gone two years on the meds Karen is taking. We should be just as prepared to enjoy that potential two years as we are prepared to deal with the unpleasantness that will eventually and certainly come. We are shoving the death watch mentality into the back of our brainmeat for the time and focusing on living our life the way we have until know. With a few adjustments. And more care and kindness than this pack of dingoes generally manages.

We're Arrogant New York Prick and we've come to rock!

Oh, during our visit with Dr. Sherman he kind of let slip his general contempt for Dr. Sirott and some of the other medical personnel we've dealt with (he and I concurred that the pathologist Dr. Poor was all too aptly named). I can see why Sirott is not a big fan of Sherman. He's kind of an arrogant New York prick but, you know what, he's our arrogant New York prick and we couldn't be happier. In marginally related news, Arrogant New York Prick is the name of my new band.

Karen's energy was good enough today to make it to the mid-year parent potluck at Dash's school. And of course I ruled the Potluck Thunderdome, wowing the crowd with a lemon buttermilk chess pie and my S'mores pie with homemade marshmallow. I'm 6 for 6 in potluck victories. I intend to go for the full four year sweep when Dash becomes a senior next year.

I will be a legend.

On the DL

So the good news is that the crizotinib really does seem to be working. Karen is breathing much better and she's not coughing anywhere near as much. We've been managing her nausea pretty well and have hit upon a series of treatment solutions (including an occasional assist from Dr. Snoop Dogg) that keep it at bay most of the time. The one thing we haven't been able to deal with effectively is her fatigue. This is not the fatigue she was experiencing from the cancer--it's from the meds. It's a subtle difference and in practical terms it really doesn't matter: dead tired is dead tired no matter the cause. That being said, when she's not fatigued her energy is markedly improved over what it was a month ago.

Karen has not hit the wall with the same results as this freak.

But she has effectively hit the wall. She's tired most of the day, getting up for an hour or so before needing to go back to bed for a nap or just some rest. Although she was doing her best to soldier on working from home she just doesn't have the energy for it anymore. As a result, effective today she has taken disability leave. There's a chance that the fatigue could lift after six to eight weeks so Karen has benched herself for just eight weeks, hoping that the tiredness will eventually lift and she can return to work. That's one benefit of the targeted, oral drug she's taking--unlike chemo, where the side effects get worse over time, the side effects of this treatment tend to become more tolerable.

It's a drag because Karen absolutely killed herself all year working for a promotion that an extended leave (longer than what she's taking) will at best jeopardize if not outright cost her. On the other hand, I get to have her around the house all day, so that's a plus.

Another side effect of this whole cancer thing: I've been reordering my Netflix queue. For some reason, I'm just not in the mood for my usual fare of subtitled gloom. It's remarkable how palatable something like Premium Rush can be when your brain cycles are consumed with all manner of nastiness.

The New Year

There's nothing like hanging up a new calendar to get you thinking about the year ahead. Well, that and a cancer diagnosis.

The irony of this whole ordeal is that as the end of 2013 started coming into view, Karen and I started thinking about where we would be in the next few years. We had one kid out of high school and another on course to graduate in a year and half. After that, what? We began to fantasize about a life as empty-nesters. What would that life look like? We weren't sure, but there were lots of options, all of them appealing in their way. About all that seemed certain would be that we'd get some truly enormous dogs and go to brunch way more. And maybe eat a big messy swath through Italy one spring. After 22 years of marriage we were feeling almost like newlyweds, looking forward to whatever shape our life might take.

So when the rug got yanked out from under us around Thanksgiving, all of that was lost. The future was still uncertain for me only waaaayyy more uncertain. While I'm old enough to know that you really can't plan the course of your life, I had felt reasonably secure that whatever lie ahead there would be one constant--Karen.  

For Karen, of course, her future is excruciatingly certain. The sense of loss she's grappling with is overwhelming in its enormity. There are no weddings, no college graduations, no big family Christmases at our new home with all the land and maybe a pool but definitely the two gigantic dogs. When your wife is sobbing "I would have been a great grandmother"...well, those are just hard times.

The reshaping of our family's future is sinking in with everyone. Tonight was a rough one for Miranda and she wound up crying in her mother's arms. While her mother's absence in her all aspects of her future was unbearable, she was especially upset at the idea that Karen wouldn't be there to help her pick her wedding dress. And how do you console her? As a parent your impulse is to say "No, we'll make it happen," but that won't work this time. There is no good way to spin the truth. That said, I promised that I'd help if/when that day came and I reminded her that I had infinitely better taste in clothing than her mother anyway.

In the end, we wound up laughing and Miranda lobbed her wadded up Kleenexes at me. Then she left to take her shower and go to bed. Karen and I hugged, I kissed her goodnight, and we continued drifting sadly into the next uncertain day.

Guarded Optimism

Today we visited the oncologist for a check-in and left feeling unusually positive. That's a nice change from the shroud of gloom we've been piloting through the last month or so. We were so upbeat we bought fancy panini sandwiches. These are very fancy sandwiches which were created in ye olden Europe and eaten only by nobility. They are not to be confused with a grilled cheese sandwich.

This positive update is John Candy approved.

Anyway, Karen has been feeling pretty well lately. We figured it was because she had shaken the cold that attacked all of us over Christmas and because she'd had close to two weeks off work to sleep and watch Die Hard. Turns out the crizotinib may be the cause. Our nurse practitioner, Kathy, confirmed that Karen was breathing better, she was no longer wheezing, her weight was stable, and she was generally doing pretty well all things considered. While the official line is that the drug should take longer for patients to see positive effects, Kathy told us that she had seen lots of patients respond this quickly. So Karen would appear to fall in that happy 60% that benefit from crizotinib. She's having some issues with nausea but the anti-nausea meds (including our state-sanctioned weed) are doing a pretty good job keeping that under control.

All this being said, I'll feel even better when we eventually have new scans taken and we can see actual measurable improvement. Assuming that it's working, Karen will keep taking this drug until she stops responding.

And how long can we expect her to keep responding? It's hard to say. Since this is a fairly new drug, there are not a lot of long-term studies to provide information. Still, I'm looking into it and preliminary research would imply that we can expect Karen to be taking it for eight to nine months. We'd prefer a couple decades but we'll take it for now. This potentially longer response time just might mean I can dodge that cruise.