Loose Strife

A couple days ago I posted “nothing new about Laura recently,” which was pretty much true at the time. Then she had a series of remarkable days this past weekend followed by the last 30 hours, which have been pretty awful. But do you really want to read another post about vomiting?
It’s an awful topic and it is terrible to think about how much of Laura’s last year has been affected by vomiting. Some ridiculous number of my posts have discussed it. Vomiting is a common cancer problem, but normally it is associated with chemotherapy treatment, not cancer itself, and drugs are usually very effective managing this side effect. Consider, instead, how debilitating it can be to vomit spontaneously and uncontrollably. When it happens infrequently, as was the case for the past several weeks, then it’s upsetting and inconvenient. But when it happens a couple times per day then everything changes. Laura is wiped out and becomes gun shy about eating or drinking. Her attitude flips almost in an instant.
About two weeks ago Laura had a rough several days as she worked through different pain medicines. But that was resolved and she was well enough to go to Boston for the Komen race by the end of the week (the weekend before last). My big concern at that time was how best to keep her monitored because she is at risk of falling or choking. Her nurse told me that I shouldn’t leave her alone, so I arranged for neighbors, friends, and hospice volunteers to sit in the house with Laura when I was away. Having visitors stay at the house for several hours at a time has turned out to be very helpful — not just for me, but for our friends, too, who at last have some way to help that is needed, practical, and a relatively compact commitment. Many people are happy and relieved to help in this way… and I still get my house to myself at the end of the day.
The “monitors” continue to visit; a friend is coming tomorrow morning. But last week Laura’s condition seemed pretty stable and we questioned whether it was really necessary to have someone with her at all times. Although she suffers from crushing fatigue, she was up and moving about on her own without much trouble last week. And when she wasn’t up, which was most of the time, she was sleeping in bed for hours. It seemed like overkill to have people constantly monitoring her. Her nurse suggested that she get a “lifeline” device that she can wear on her wrist that has a button to call for help. (You remember the ad.) So we did. It’s not a perfect solution, but given her condition (fatigued and a little unbalanced, but mentally aware) it seemed adequate.
During this past week, Laura also decided to go to California on the 25th (next Thursday) to attend a wedding of good friends. I don’t like the idea. I worry that something could go badly and I also worry about how exhausting cross-country travel can be — there and back over 3 days. But we discussed the trip numerous times and she never changed her mind. You can’t deny what is essentially a dying wish, so I made the reservations. (I’m hoping she’ll be able to play that card for some time to come! The other wish is for a new handle and latch on our main exterior door. I haven’t done that, yet.) Laura’s friend Jeri will accompany her. You have to give Laura credit for continuing to choose the unexpected and do things that really matter to her and people she loves. And it definitely speaks well of her opinion about her own condition if she feels (or felt) up to taking the trip.
Then this past weekend was truly remarkable. I started having delusional visions of Laura returning to normal. On both Saturday and Sunday Laura was up by mid-day and didn’t go to bed until late at night. We had a friend from Santa Cruz spend Saturday night with us and Laura was awake, engaged, and eating well (albeit extremely small portions because she chews so slowly). On Sunday she took a stroll in the garden and stayed up until well past midnight tooling on the computer — something she hasn’t done for quite a while. And on Monday she was up and on the road by 8:15. She hadn’t been out of the house for about a week, but it went well. We met with a new neurologist in the morning and had lunch at a favorite mexican restaurant. After the neurology meeting she wondered aloud why she was wasting time at home when there’s so much that she could be doing. She seemed to be suggesting that she didn’t want to lie in bed waiting to die, but wanted to be more aggressive again dealing with her cancer and she wanted to take another crack at much unfinished business. But then late Monday afternoon she threw up and everything started to unravel.
She refused food, slept poorly, her back and neck pain worsened, she punched in extra morphine dosages, she struggled to get out of bed Tuesday morning, her nurse came and she threw up, she slept some more, successfully drank a milkshake, and slept some more. In the evening the kids and I went to Lily’s elementary school open house and when we got back it looked like Laura was doing better; I can tell just by looking at how quickly she moves her arms when she rubs her face. I got the kids to bed and brought Laura some chicken soup for dinner. She ate it, crawled back into bed, and wanted to start working on a project with me. And then she suddenly threw up again. Exhausted, she lay back and went to sleep.
For me, the swings are probably the most aggravating part of this journey. If I had written this blog entry yesterday as I had intended to do, it would have been completely different and it’s very possible that tomorrow will surprise me. Our emotions seem to be so precariously balanced that pulses of fortune or misfortune throw us wide to the side.
Making the right decisions is challenging. For example, the neurologist suggested that Laura get a swallow test to determine the specific problems she’s having. She was all for it after the neurology appointment, but today all she said was, “can’t a girl change her mind?” There are several other similar decisions to make now, but we don’t know what to do because we both know that there’s a big picture decision that needs to guide the little ones. We need to settle on the right attitude about her cancer, her treatment, and her life. The neurologist noticed that her two pupils were dilated differently, which he thought might be indicative of hydrocephalus. He requested that Laura get another CT scan of her brain. Should she? Probably, because a relatively simple shunt adjustment could reduce or eliminate the hydrocephalus — if that’s the problem. Maybe her vomiting over the last two days is a related complication. Or maybe not. Maybe the CT scan would show new tumors. Then what? Would she undergo any different kind of treatment? And then there’s her legs, which I’ve mentioned are starting to deteriorate. Twice she’s collapsed while climbing stairs and she’s worried that she soon won’t be able to walk again. Should we ask for a spine MRI? If new tumors are found at the base of her spine, would she do anything? Is she able to take daily trips to the hospital for radiation? Does she want to take the trips and could she handle the additional fatigue from the radiation? Would radiation be likely to work and even if it did, would she be well enough that it mattered by the time the treatment was over? In order to make the first move, it seems like we have to consider choices that are several decision steps down the road. And that all comes back to the big question about her overall attitude about how she wants to be managing her cancer and her life.
If we knew how long she will live then many decisions come into clearer focus. But nobody knows what her cancer will do. We could get more scans and other tests to see if there are any signs of progression anywhere in her body. If there were new findings, that would color our thoughts, but if there were no new findings then we wouldn’t be any better off since her nervous system mets have always been camera shy.
Another issue that came up with her nurse today was how best to manage eating. If her vomiting continues, then maybe it can be arrested by increasing her steroid dosage or adjusting her shunt. But if not, should she consider what’s called total parenteral nutrition? That’s where she gets fed intravenously. Currently Laura is slowly losing weight. With TPN she’d maintain weight and nutrition. In addition, she wouldn’t be vomiting because there would be nothing in her gut. The upside and the downside is obvious: no eating. Also, there would be additional discomfort with multiple IVs to support pain medicine and food separately, plus some risks of complications. But that’s probably getting way ahead of ourselves. Too many what ifs.
For now I’m just hoping that she’ll make her trip next week.