Loose Strife

Amid our first big snow storm of the season, the kids and I drove down the mountain and back this afternoon to pick up Laura from the hospital.
Laura’s looking and feeling better. Her migraines have moderated both in frequency and severity. (She says the one that made her lose her cookies this morning was just an anomaly.) Her pain meds are significantly reduced. She is experiencing some bone mets pain again, so she’ll need to find the right dosage, but hopefully she’ll be comfortable at a lower steady state that won’t be as fatiguing.
Laura worries that chemo nausea will set in soon, since that’s what happened about this time during the previous two rounds. But she’s got some better guidance from a dietician and physical therapist that I hope can keep her a little more active and calorie “net positive”. Hopefully she can get into a good place and stay there. We heard many doctors talk about “vicious downward spirals”. Maybe she can find an upward spiral.
We’ve got about 10 inches of beautiful, light powder here. I just came inside from a late evening of moving snow. No good for snowmen, but if I were a skier I’d be playing hooky tomorrow.

A quick update for Wednesday. Laura will stay at least another night — which is actually good news.
The GI endoscopy found nothing remarkable, as expected.
But the coordinating doc doesn’t want to let her go, because the headaches aren’t under control, yet. They’re modifying some meds and also taking her off her current narcotic and replacing it with another. Currently she wears a 72-hour slow-release patch (called Fentanyl). It takes about 24 hours for it to leave her system. Meanwhile, since she’s in the hospital with an IV they’ll put her on a morphine drip. This is a great opportunity to figure out what pain medicine she actually needs — if at all! Nobody knows what pain she might have now from her bone mets, and maybe due to radiation and chemo she might now have none. With an IV they can modify the pain medicine quickly and easily. They still have to keep her on some narcotic due to withdrawal issues, but she can be weaned off it over time, if appropriate.
All for now.
(A quick reminder that those of you receiving this blog via email are usually one day behind because the email goes out in the evening and I usually post late at night. But, for example, today you’ll get two because this post is in the middle of the day. Got it?)

Laura spent a second day in the hospital and it was slow, but good. Several friends stopped by. Thanks for that. And thank you so much to the friends who have been watching Naomi and Lily for the past 48 hours!
The hospital was so busy that Laura waited much of today for an endoscopy to look in her gut. Considering the fact that Laura hardly eats much of anything, the irony was that she badly wanted to eat and drink after fasting for 14 hours. Ultimately it was rescheduled for tomorrow (Wednesday) so she gets to do it all over again.
Laura talked with a neurologist who, surprisingly, said she is having migraines — even though they are of short duration and frequent. I guess it’s a broad term. The neurologist does not think it’s a drug interaction, but wouldn’t guess what the cause is. He put Laura on a new headache drug that builds in efficacy over a few days, so we’ll see how it works. This afternoon the “hospitalist” (the coordinating physician) witnessed a medium attack and saw how it paralyzed her, keeping her from moving or talking. I think that was helpful to demonstrate the severity. The good news is that she hasn’t had the extreme attacks for two days: no vomiting, no nausea. I suspect it will continue that way and she’ll probably be coming home tomorrow or early Thursday after meeting with a few other specialists and getting the endoscopy.
But nobody knows what’s causing the headaches or the vomiting. Actually, she throws up for at least two reasons: chemo or cancer-related and migraine-related. (In the early days of her diagnosis, before chemo, she threw up for yet another reason apparently related to the fluid around her lungs, but that has subsided.) The migraine-related heaves are typical of severe attacks, so hopefully the new meds will deal with that. There’s some suspicion that the migraines are due to a change in narcotic four weeks ago. The opposite hypothesis is that the narcotic is actually keeping them from being worse. This is supported by the fact that they might have become worse during the last week while Laura reduced her dosage during this same week. But the dosage reduction was done to try to reduce chemo/cancer-related nausea, so it’s obviously complicated!
A friend with decades of personal experience with debilitating headaches (I shudder to imagine) suggested that, as in his case, it might be muscle related, which especially makes sense since Laura has been almost bedridden for months. Several doctors acknowledged that muscle-related headaches can be severe, but said that the description of Laura’s episodes and the fact that they’re not triggered by movement (they often can wake her up) doesn’t favor that theory. Another idea is that they’re hormone related since Laura was on a ovarian suppression drug until the end of November.
So again, nobody knows. And the body is a complex system. Ideally the cause can be found and eliminated, but otherwise we can only hope that the symptom can be addressed effectively.
Laura also met with a psychiatrist, a dietician, and someone who does something called “reiki”. As I understand it, reiki is essentially a touch therapy that makes you feel more relaxed. So, it was humorous to watch the reiki person go through a litany of questions about Laura’s condition and record lots of paperwork just so she could lay her hands on her. Modern medicine meets faith healing, I guess.
The dietician’s meeting was excellent. As I mentioned yesterday, I’ve been concerned about Laura’s lack of nutrition since she hasn’t had a solid food for months (with very minor exceptions). But surprisingly, the dietician wasn’t concerned about solid food, she was just interested in making sure that Laura could easily consume sufficient food for necessary calories, proteins, and other nutrition. Liquids will do. She had some good ideas for other foods and concoctions that I can whip up. Nothing earth shattering, just things like protein-fortified milk shakes or cutting her Ensure nutritional drink with milk so it’s more palatable and she can more easily consume more and get more hydration.
Last, now that we live in faraway Ashfield, to all of you reading this who live in the Northampton area, go visit Laura while you can — day or night. It is utterly amazing to see how Laura is transformed by visits from friends!

Not much to report. Laura is at Cooley-Dickinson hospital in Northampton. She’s just fine right now. I’ve been keeping a record of the time, duration, and intensity of her headaches. Every hour or two, for 5 to 10 minutes, pain between 6 and 10. (Everywhere in the hospital is displayed a row of faces — from happy to crying — to indicate pain on a scale from 1 to 10.) She hasn’t had a 10 since she threw up in the ER last night. That might be luck or good hydration or the toradol IV or something else.
Now that she’s in the hospital she’s assigned a doctor that oversees her coordinated care — which is great. That means that today she saw a oncology social worker and a gastro-intestinal doctor. Tomorrow a neurologist, psychiatrist, nutritionist, and maybe physical therapist. Maybe receive some complementary therapy (read “alternative medicine”) such as acupuncture or Reiki — just because she’s there and it’s free. Possibly more. So even though Laura could come home, by being in the hospital she quickly gets attention and coordinated opinions shared among multiple specialists. Ideally, she won’t be discharged until there’s a plan for dealing with all her symptoms. We’ll see how it actually works out…
We were really expecting that her oncologist would orchestrate this sort of symptom management, but it didn’t happen. Indeed, in my opinion, the oncologist has blown off some critical issues. For example, the oncologist has been told repeatedly that Laura has been on a soft diet almost exclusively of jello and Ensure for months and I’ve asked her specifically about nutritional concerns. The doc has never pursued this angle herself and her responses to me have been modest (e.g., “tell Laura to eat easy foods that are high in protein like eggs.” Never mind she refuses.). But several physicians today said that something needed to be done to ensure that Laura is getting proper nutrition, not losing weight and getting progressively weaker, and should return to normal meals, if at all possible.
Maybe since Laura’s blood work isn’t too alarming and she hasn’t lost too much weight, the oncologist just isn’t very concerned. Her goal is to squash cancer. Perhaps from her focused perspective, the rest is unfortunate side effects that will ultimately pass.
The oncologist is still a major player in the hospital stay, but there are others involved, too. It’s become increasingly apparent that I can’t rely on any one person to do the work of fully managing Laura’s case. We have to actively do it ourselves, including being a squeaky wheel, when necessary, and pursuing specific help. Anyhow, enough ranting.
Laura got a brain MRI this morning and we heard from the GI doctor this afternoon that the preliminary radiology report found nothing. Since a neurological problem is an obvious explanation for the months of vomiting, this MRI report is another “good news / no clues” report.

Laura’s been having debilitating, painful headaches that probably aren’t migraines. The most intense ones end in her vomiting. Last night during such a severe bout she became dizzy and fell. I took her to the ER and we’re in the hospital now. Not sure what will come of it. At first they were just going to discharge her again with some different pain medicine since there were no beds available. I pushed and she spent the night in the ER and has just been moved to a room — no normal rooms so she’s in post-partum (swanky digs)! She got an MRI an hour ago. Will be meeting with various people today: neurologist, nutritionist. Maybe a pain specialist. Maybe talk to someone about some complementary therapies. The conventional wisdom is that the headaches are probably a drug interaction, but not clear yet how that’s going to be figured out. She might be go home today. Not sure yet.
More later…

I haven’t posted in quite a while, so I have a lot of catching up to do. Laura’s family all have now long gone back to Virginia, including Natalie and Joe who have been a phenomenal comfort and support around the house for some time. Thank you especially to them!
Being a stay-at-home dad is, so far(!), a lot of fun. I’m really enjoying the cooking, kid activities, and all the house and kid management. It’s been beautiful and snowy. Naomi, Lily, and I have had a lot of fun. Naomi is a precocious, ornery, and joyful kid. Lily loves to play and do things together. One major concern is that Lily has recently been exhibiting what appear to be strong anxieties about Laura’s health. But more on the girls another time. All in all, the kids and I have been happy and engaged.
Today Laura went in for her fourth round of chemotherapy. There’s a lot of news leading up to today. Laura’s last round was 3 weeks ago. The intervening days have been miserable for her. She changed some of her drugs and that seemed to keep her from throwing up for about a week. But it also left her feeling even worse than before. She had a little more appetite for a while, but by the last ten days she was back to just jello and Ensure again when the nausea and vomiting returned. She’s become progressively weaker; the word fatigue is not enough to describe how wiped out she has been. And over the last week it’s been accompanied by severe headaches — the headaches often culminating in her throwing up.
Six weeks ago Laura was tired, but might pace about outside or drive to a nearby appointment. But more recently she’s been almost comatose. Sure she sometimes has a few better hours in the day, but it’s not an exaggeration to say that Laura sleeps and rests for 23 hours each day and is too weak to do much more than to slowly shuffle to the kitchen to stir up another box of jello. Certainly she hasn’t been engaged in anything.
All this awful quality of life is in the perplexing context of improving cancer indicators. Her back pain is mostly gone. Her pleural effusion apparently good. The cough gone. The blood-based cancer marker falling. And her red and white blood cell counts, while a little low, have not fallen precipitously during her chemotherapy.
Given this picture of contradictions, on Monday Laura had another set of CT scans. The comparison of CT scans over time is considered the definitive indicator of the state of the cancer in her body. Last week, the oncologist added a head scan to the line-up to check for brain metastases since Laura was having headaches. So it was another full-body scan.
There was terrific anxiety leading up to Monday — only a small part of that related to the outcome. Laura has deep and thin veins, and trips to the hospital have twice resulted in awful experiences in which Laura became hysterical while technicians spent literally thirty minutes trying to tap a vein. Her last CT scan was particularly horrific. Although the IV was inserted successfully, the “contrast dye” that was forcefully injected into the back of her hand caused extreme pain. I sat in the waiting room and heard her scream and beg for it to stop. It was truly awful.
Since that last bad CT experience, Laura had a “port” put in, which I’ve mentioned before. It’s a catheter surgically implanted under the skin that attaches to a major vein. It makes accessing a vein as easy as a pin prick and is used for IV infusion such as chemotherapy. We also assumed it would be used for the CT scan. But I learned from online reading that for technical reasons a conventional IV had to be used. I spoke with her surgeon who spoke with radiologists about Laura’s last painful CT scan. While everyone agreed that the port couldn’t be used, nobody knew why she was in so much pain. The best guess was that the high pressure injection was done in a vein that was too small and that some of the dye might also have leaked into soft tissue. So the advice was to tap a big vein. Anyway, I’ve spent too long on this lead-up. In short, Laura and I worried whether the IV would be successful, whether a good big vein could be tapped without troubles, and whether the dye injection would still be painful. The good news is that it all went very well. A very good phlebotomist skewered Laura in a big upper arm vein on the first try and the dye didn’t hurt at all. (Yes, Laura threw up four times on Monday. But we still considered it a success!)
OK. So scans were done. Today we went in for her oncology appointment to review the results and get another chemo round. Poor Laura was so tired as we sat waiting and her head throbbed. She hadn’t been able to keep food down for about 72 hours. Couldn’t sleep much either. Anyway, she listened with her eyes closed as the doctor reported good news after good news.
First, the CT scan showed no brain metastases. Second, there was no new tumor growth. No bone progression. And the ovarian tumors might have slightly shrunk. One side of the pleural effusion was less than in the previous scan. Neither side was worse than before. And her cancer marker was down to the 100s where it was in August. All these results are very good!
But Laura didn’t react. (She later told me that she was hoping for something more miraculous like “things have improved so well that we’ll take a break from chemo starting today.”)
Instead, Laura did another round of chemo this afternoon. Beforehand, I asked the doctor when it would end? She said that this particular chemo cocktail was clearly working and that while there were always other chemo drugs and other options, she said that Laura should continue with the current chemo until it stopped working or until she reach the maximum allowable total dosage (because there are side effects related to heart damage that increase with cumulative use). The maximum allowable would take us into spring of ’08.
I told her that there must be an important trade-off to consider regarding quality of life and remission. If Laura survives longer, but is a zombie, what’s the point? The oncologist acknowledged that there was this important trade-off with metastatic cancer, but offered nothing else. After the doctor left the room, Laura whispered, “I can’t do it.”
This issue definitely isn’t going to go away. Much of the debate boils down to what are the root causes of her poor health. Some of it is directly due to the chemotherapy drug, some due to the remaining cancer. Some of it is due to side effects of other medicines, and some of it is due to psychological effects. Still other secondary causes include diet and little exercise. And then there are the complex interdependencies and feedback effects of all these things. Laura’s oncologist thinks the most significant factor is psychological, while Laura thinks it’s the treatment. (This is something that I’ve skirted in my posts in the past because it’s an uncomfortable public subject. But at this point, any ignorant conceptions of depression just need to be thrown out the window. We’re not talking about a situation where simply the lack of willpower or personal strength is at stake. We’re talking about a serious clinical disease literally affecting one’s physical survival. Depression in a cancer context deserves plenty of attention and no shame.)
So who knows if her oncologist is right. Severe clinical depression, anxiety, and fatigue can be a ravenous monster that has a reach far beyond the brain. But could it wreak its damage so severely to result in such incapacitation and physical illness as Laura? Maybe so, and we take the possibility seriously. Laura has several doctors working with her on this. But it will take a lot of time. Meanwhile, there’s the obvious feeling that the chemotherapy and other drugs just continue to make her sicker; making changes there could quickly turn things around.
A few other topics before I close.
Regarding the recent headaches and resulting vomiting. The oncologist thought it was migraines and referred her to her primary doctor. Laura’s never had serious headaches of any kind, much less migraines, so why this is happening now is a good question. I managed to get a last minute appointment with her primary doctor after Laura’s chemo round was over. So we drove down the street, met with her doctor who agreed with the diagnosis, gave Laura a new migraine wonderdrug injection, and Laura said that the throbbing quickly subsided. Then she pretty much passed out. She’s been sleeping ever since. Here’s hoping it works.
Lastly, more drug juggling. Laura’s going to try yet another anti-nausea drug. She’s going to take a lower dose of a post-chemo steroid for the coming week with hopes that it will keep her from throwing up, but not mess her up so bad as last time. And finally, she’s going to experiment with reducing her pain medicine. Large dosages are likely contributing to her fatigue. But weaning off of narcotics has its own challenges…
Take care all. Thanks for your comments, emails, cards, flowers, food, gifts, thoughts, and prayers.

We’ve had a full house lately and I haven’t taken the time to post any news.
Happy Birthday to my sister, Karen! Happy anniversary to my parents! And Happy Thanksgiving everyone!
All of Laura’s brothers, sisters, nieces, nephews, and her parents all came to Massachusetts for Thanksgiving this year. We had 18 at the table for a sumptuous dinner. Some new photos from the big visit have been posted to the November photos section. It was a treat to have all of Laura’s family at our house. Laura’s still too fatigued to spend a lot of time up and socializing, but she got weepy this morning as she was lying in bed and telling me how wonderful it sounded to hear all the squeals and feet of so many kids. Thank you to all the Coleman clan for making our Thanksgiving a truly thankful time.
Although Laura finds it hard to acknowledge each new good sign because she still feels so poor and is so incapacitated, the truth is that she continues to improve. This latest round of chemo has left her at least as wiped out, if not more so than before. But a change in her pain meds (and perhaps some other drug interaction and other factors) has almost eliminated her vomiting. Probably as a result she’s eating larger portions (of the same few foods), but she actually ate a few bites of mashed potatoes and turkey on Thursday — which was a huge milestone, in my book. And she’s mostly sleeping in the bed again, which seems like another big improvement. It’s true that the cancer pain hasn’t been eliminated because she’s still taking regular narcotics, but otherwise it seems that cancer is coming under control. It seems reasonable that the fatigue can be chalked up to the physical and mental burden of months of pain, pain meds, chemo drugs, side effects of other drugs, minimal diet, and negligible exercise. And as cancer continues its remission it seems reasonable that these factors will all subside. Of course I hope and hope and wait on the next set of tests.

Small town police logs are always a source of a good laugh. And the New England dry humor makes this terse report into the first section I read. Ashfield’s log will predictably have a least one memorable report (my mother-in-laws favorite was something along the lines of “Woman reported motionless lying on lawn. Officer sent. Woman had fallen asleep while reading book”), but the best I’ve yet to read appeared this past week:

Saturday, Nov 17, 6:45 pm: 911 call on Bug Hill Road; reported as a female out of conrol because she did not receive a chicken dinner. Officer sent; dinner was prepared.

So many questions unanswered.

Sorry I haven’t posted any news on Laura for over a week, but I didn’t really have any news, and didn’t want to merely post that Laura was still extremely fatigued, vomiting daily, and feeling down.
But I have good news today that the chemotherapy is working — that the cancer is receding. Laura had lots of extra blood tests and everything came back normal. No indications of problems, for example, with her liver, kidneys, etc. No indication of nutritional deficiencies. Suprisingly, she’s not dehydrated nor did she lose as much weight as we thought. And her cancer marker has continued to fall from about about 400 to 300 to 200 over six weeks. Both her oncologists have examined her in the last week and found that her lungs sound very good and she reports no serious pain in her back (although Laura’s on some hefty amounts of pain medicine). The opinion is that radiation was successful and chemotherapy is doing its job.
That’s all really good news. Laura will get a CT scan in three weeks before her next chemo for a more definitive reading, but these tests are all very encouraging.
However, all that success doesn’t explain why Laura is feeling so sick. I’ve felt frustrated with the oncologist because I worried that she wasn’t doing enough to address Laura’s symptoms, but today was a very productive visit in which her doctor clearly recognized the problem. “On paper, I’m very encouraged,” her oncologist said. “But day-to-day there’s much that still needs to be done.” Laura’s condition can’t be simply chalked up to chemotherapy, the doctor said.
This isn’t to say that the oncologist knows what’s causing Laura to be so sick. But she’s got some good ideas and the oncologist left me with a long list of plans including modified meds, specialists, etc.
Two days ago I was considering taking Laura to the hospital to get her a “tune up” and force the issue with her doctors. Laura balked at that. And now I feel much more optimistic that something can and will be done.

Time marches on. I’ve started November’s photo album.