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.