Liza Yore's Journal
This is boring. Boring is good.
Written Jun 3, 2013 10:37pm by Liam YoreLiam here.Wow. It's been over 2 months now since the last update, which kind of blows my mind. The reason, of course, is that there hasn't been too much of interest to report. Which is good.Liza continues to do well on treatment. She continues on the oral chemotherapy meds: Tykerb (Lapatanib) daily and Xeloda (Capecitabine) 14 of every 21 days. It's fair to say that she has a lot of side effects, but also fair to say that she is tolerating them well. Her fingers and toes are all cracked and bleeding at the tips. It was bad enough for a while that her doctor lowered the dose of the Xeloda a bit, which seemed to improve things. But still, she can't wear shoes (fortunately we are in sandal season here) and it hurts to take the lids off of jars and suchlike activities. Though I can see it still bothers her, Liza complains about that a lot less than before, which means either she's getting used to it or her stoicism is increasing. The latter, I think.The biggest drain, just now, is the fatigue. As each cycle of xeloda progresses, she gets more and more tired to the point where she's sleeping 16+ hours daily. Which sounds lovely until you realize that a) it's not optional and b) she still feels exhausted when she's up. Fortunately, this improves during her off week and doesn't really come back until she's well into her next cycle.Liza did have an MRI a few weeks ago. It showed that her brain lesions remain gone, and no new lesions are evident. So that was good news. Her derm stuff all turned out more-or-less OK (barring pathologists' weaseling). We are scheduled for repeat PET scans next week. This will be kind of a high-stakes test for us. We are really hoping to see major shrinkage of her liver tumors. Liza's oncologist has even raised the possibility that she might be able to go off meds for a while if the scans are good. Frankly we are not down with that. There's no way the cancer will be actually gone and so the thought of stopping the meds that are killing it makes no sense to us. And also, when the cancer "comes back" they might not let her go back on the xeloda, having already been on it. So we'd have to go to the next line therapy, which is in fact a very good therapy, but has some unique issues (IV infusions, heart problems) that we'd prefer to avoid for as long as we can. So as tempting as it would be to have a chemo holiday, we are committed to staying on the meds for the long haul.We have gotten into the swing of "living with cancer." It's not too awful. We are living in the moment and able to take a lot of joy in the kids, who are all doing well. The bad days can be quite bad: Liza had to have one of our dogs put down while I was out of town. Bad as that was, one of our kids lost it and draped himself over the dog's body in tears. All Liza could think of is how awful it would be if it was her he was grieving for. Not a nice day. Of course, Liza being Liza, this just strengthened her resolve to get through this. but it was a rough day.As for me, I'm doing OK. I have a lot of stress to cope with: home & work & other. This has actually caused a weird condition in my left eye: a stress induced leaky capillary behind my left retina called central serious retinopathy. So I have no central vision in that eye any more. They say it may get better on its own, and if not, they can laser it or inject a chemotherapy drug into my eyeball (YES YOU READ THAT RIGHT: INTO MY EYEBALL) that should take care of it. For now we are just watching it and I remain functionally monocular, which is an odd experience. But it tells me that I've hit my physiologic stress limit (there's only so much tequila in the world) and so I am taking active steps to reduce stress where I can.Not a lot else to report for the moment. Obviously, we'll have more of an update sometime probably late next week. Hopefully it will be all good. In the meantime, thanks for your well wishes, and if we happen to have one of your Pyrex dishes, please let me know so we can return it!
Written Mar 28, 2013 2:50pm by Liam YoreApologize in avance if this is a long-ish post, but it's been a little bit of an eventful month.First of all, the good news, for what it's worth. In early March, Liza had a repeat set of abdominal CT scans to check in on the status of her liver tumors. This was more than a little frustrating, since we had wanted a PET scan, which provides more information about tumors and their activity, but the insurance company wouldn't pay for it. We appealed, which takes some 60 days or so. In the interim, we just got a plain CT scan.However, the scan results were very good. Based on volume, the tumors were down over 90% in size! The big one went from >3cm to around 0.6cm in diameter. That's a pretty great response, and we were very happy. The other tumors also seemed to shrink, but the CT is not as precise as the PET, so we really can't say what happened to the smaller tumors. There was also a bone scan which was completely clean.As the weeks went on, Liza was having more and more side effects from the chemo. The fatigue was getting pretty disabling. She was having worse chronic diarrhea after every meal. Most distressing, all of her fingertips and toes were really red and cracked. This made wearing shoes impossible and made it impossible for her to exercise, and even made it very difficult to do chores around the house. The cracks at the edge of the nails would ooze and develop these proliferative granulomas which bled and were super tender. One night our dog Iris jumped with her 110 lbs directly onto Liza's poor big toe and Liza was curled up on the floor for half an hour in pain.Eventually, her oncologist decided that she needed a break from the chemo, or at least the more toxic of the two. So she got two weeks off of the xeloda, and her fingertips and toes did a lot of healing in that time. She also gets a very slight dose reduction on the xeloda going forward.So our oncologist was really pleased with the tumor response and sent us to the UW for a consultation at the Liver Tumor Clinic, which apparently exists. This was a big-deal, high-stakes sort of day for us. It was carefully orchestrated with a lot of sub-sub-specialists, and a long day for us at the U. The idea was that the liver tumors were so small that they could stick a wire into them with ultrasound guidance and burn the tumors to death with microwave radiation. Liza was really ambivalent about this, just being put off by the seeming risks of such a procedure. But on the other hand, there's something really appealing about just killing the damn cancer directly.As it turned out, they did not recommend such an approach, nor any direct surgery at all. Their rationale was that a) there was too much tumor in there to get it all (i.e. lots of little ones) and the response to chemo so far had been so good it may not even be necessary. Adding to the frustration was that the CT scan was just not as useful as a PET scan would have been. I don't think it would have changed their recommendation, but it caused a lot of head scratching and a bit more uncertainty.So the positive spin on this would be "you're doing so well you don't need surgery," but it can easily feel like you're being told "tough luck, we can't help you." And frankly, it felt like the latter. I've got nothing but good things to say about the liver team; both their bedside manner and also the technical explanation were great. But we both left there with a sinking feeling on our guts, that we had gone through this hugely wrenching experience for absolutely nothing. We will follow up with them after the next round of scans and see if things change; it may make sense to do surgery in the future, but not now.Additionally, it was really emotionally hard for Liza since she had never seen her scans before, and the original PET scan actually looks horrible. Liza said her liver looked like Swiss Cheese there was so much tumor there. It's one thing to abstractly know there's cancer in the liver, but it's another thing entirely to be smacked in the face with it, and have it be a lot more than you'd imagined. So that just made a hard day even harder.To top it off, when we got home, Liza got a call from her dermatologist. She'd had about 5 moles taken off a week ago, and two of them had some back, not malignant, but "very abnormal" and so they were recommending a wide field excision. Not a big deal in the grand scheme of things, but one more damn thing on top of an already terrible day.It doesn't help that she did restart the xeloda a few days ago, and while her fingers and toes are marginally OK for the moment, the fatigue is hitting her like a ton of bricks. Its like starting all over again, she says. So she's taking a lot of naps. Ordinarily, you'd think that'd be a good thing -- who doesn't like a nice nap? But a nap implies leisure, really, and that's not what Liza's doing. She's napping because she HAS to, and it's keeping her from doing all the things she needs to (and those she WANTS to). So it's not at all a "pleasant" sort of nap as much as it is a "collapse involuntarily for a couple of hours" sort of nap.So we have our ups and downs. Honestly, this has been a rough week. Hopefully next week will be better. Thanks as always fro reading and for your positive thoughts.
A bit of good news
Written Feb 16, 2013 3:05pm by Liam YoreLiam here:So Liza had a brain MRI the other day, to follow up on the Gamma knife procedure she went through in December. We had been advised that the tumors would still be visible, maybe even a little bigger. Something they call "treatment effect." Basically it's analogous to scarring. We were also told to expect some new mets to be visible, since the presumption is there were some that were too small to see on the first scan and they would have grown a bit while the chemo was just getting started. (There's some debate over whether the chemo does much for the brain mets.)Anyway, the results were GREAT. Far better than we had been led to expect. The radiation oncologist was almost elated. There were NO new lesions, and the previously seen ones had essentially melted away. Seriously, if you didn't know where they had been in the first place, you might not have noticed anything at all. So this was a complete success -- 99th percentile level response, according to the doctor.We are pretty happy. It's nice to get some good news for a change!So currently we are fighting with the insurance company to get approval for follow-up CT and PET scans of the body to see whether the chemo is doing its job on the liver mets. More imminently, though is that we are off to Mexico tonight for a week on the beach.