Thursday, May 22, 2014

Steady On

There's not a whole lot to report at the moment. Karen had her most recent maintenance chemo infusion last Monday and as I write this she is languishing in bed. While the recovery from this minimized chemo dose is decidedly better than it was with the full-on chemo, it is still, as the wits say, a real bitch.

And still we soldier on. Karen is looking forward to Dash's graduation in a couple of  weeks as that was the stretch goal she had set for herself. Then, later in June, because the maintenance chemo is so relatively tolerable, she and Miranda will travel to North Carolina to spend a week for some sort of Ultimate Steel Sisterhood of the Traveling Ya-Ya Magnolia Pants where they will join both of Karen's sisters, Karen's best friend since high school, Karen's mom, and a special one-day guest appearance by Karen's Aunt Molly. I will be home. Or in Atlanta. Or maybe Shanghai. No, really.

Party on, everyone.


Wednesday, May 7, 2014

Shrinky and the Brain

The new leader of Karen's medical team.
Karen had another follow-up MRI yesterday and the results were about as good as we could have hoped for. The tumors in her brain have shrunk even more, to the point that one of the three is basically impossible to find without shrinking down Donald Pleasance and Racquel Welch and injecting them into Karen via that handy new port.

Between this and the PET Scan it seems as if  the reprieve bugle has been unequivocally sounded. Karen is doing pretty well and should continue to do so for awhile. The recovery from the maintenance chemo is going smoothly and while there were some bumps during the first week she is doing much better at this point in week two than she did during regular chemo.

So it looks like we're ready-ish for the summer and whatever that brings.

Monday, April 28, 2014

Another New Normal

Today officially marked the beginning of maintenance chemo. Compared to the previous chemotherapy regimen--particularly the Avastin colitis nightmare--this was a total breeze. I ought to know--it didn't happen to me.

Karen's port is just a little less intrusive than this one.
At any rate, the chemo session was delightfully short, taking only about an hour from start to finish. This is one of the great benefits to going down to just a single therapeutic drug. Not only are we sidestepping the lengthy infusions of the other drugs but we're not having to sit through the administration of the additional meds that go along to make those drugs more tolerable. No more Emend, etc.

The chemo experience was also made less unpleasant thanks to Karen's brand new port. She had it put in last Thursday and while it was still sore today, it was good to go for her treatment. The port "lives" under her skin in her upper right chest. To access it, the nurse administering the drugs simply attaches an IV coupling to the port, then hooks up the IV to that coupling and away we go. Instead of hunting for a good vein--and Karen has basically just about run out--the nurse only has to plug the needle into the port. The port is already attached to Karen's circulatory system into a vein I forget the name of.

Post-zombie apocalypse childcare at its finest.
And now we just, well, coast. This is yet another new normal and while it's not as great as the grand old days of Crizotinib, it sure looks better than regular chemo (even though it adheres to the same Every Three Weeks schedule). We can expect to wring about 6 to maybe 12 months out of maintenance chemo assuming all goes well. So it's another anniversary, another Festival of Pies, another Christmas, another lots of things.

Looking ahead: Karen will have an MRI in a week to check in on the growths in her brain.

Looking back: Karen grew tired of the patchy Medusa look the chemo had left her with so she cut off most of her hair. She did not shave her head. Which is probably good because I have my doubts about her ability to pull that look off. The end result is pretty good, leaving her looking kinda like Carol from the Walking Dead. Ideally, she will not instruct our kids to "look at the flowers."

And God forbid she tell them to make flowers. Eep. I just made my skin crawl.



Friday, April 18, 2014

Trying to Maintain

Of course, our doctor and nurse practitioner are both on vacation this week, the very week we get the PET scan to determine if Karen's chemo is working. Less expected, our NP directed the oncology office to contact her if any of her patients' test results came in. So we got Karen's results via a beach somewhere in Mexico.

And it appears the chemo is working. While there is still metabolic tumor activity, there is no growth or metastatic activity. So now Karen will transition into maintenance chemo. She'll be sticking to the same schedule of getting infusions every three weeks but the med mixture will be limited just to the Alimta. We are hopeful that the more stripped-down medication regimen will make her recovery period shorter and less unpleasant. She'll continue with this course of action until we see evidence of it no longer being effective.

This also means that Karen will go ahead with getting her port, uh, installed. That will happen sometime next week, giving her just enough time  to recover from the minor outpatient surgery to have the oncologists jack into that port for her first maintenance chemo treatment on the 28th.

To celebrate, I'll be taking Karen to the weed store this weekend for their big 4/20 gala. See you at the Berkeley Patients Care Collective!

Monday, April 14, 2014

Waiting Around

It's been awhile since I've posted here. While I generally try to wait until we have something worthy of remark to post, I've been getting prodded to update regardless and, well, so here I am.

There's no real news to log here. That will come later in the week. Karen's last of the initial six chemo rounds went about as expected and she is starting to bounce back. Still, every recovery gets a little tougher. The three weeks are just enough for her to recover but not quite fully. So she's starting each round just a shade weaker than the preceding one. But she's hanging in there.

Pure. Sexual. Magnetism. oh yeah.
The news we'll be getting later this week will be the reading on her latest PET scan. That took place this morning. For the first time, Karen decided to stick around and get the DVD they make for you. The DVD comes with a PET scan reader program and allows you to review all the images and navigate through the various anatomical locations. It's actually pretty freaking cool. We reviewed the images as best we could but since we don't have the images from the scan before this one at home, we cannot really compare them to figure out how things are going. We are, after all, decidedly not doctors. We have some idea what to expect later this week but, really, we're just making half-educated guesses. I'll hold off on posting PET scan stuff until the experts weigh in.

In the meantime, Karen has lost more hair and now sports the hairline of funnyman Billy Crystal. Though, honestly, can we really refer to him as "funnyman" after My Giant? The good news, aside from the hairline she has not adopted the constipated tortoise visage of Mr. Saturday Night. So she's got that going for her.

Monday, March 17, 2014

Drip Coffey

And back we go to chemo!

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

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

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

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

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

Tuesday, March 4, 2014

Gut Response

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

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

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

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

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

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