Loose Strife

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.