Cancer Diary: Late-Stage Cancer Diagnosis: Fast-Tracking Decision-Making on a Roller Coaster
Earlier, I wrote about the two paths that erupted in front us when faced with a late-stage cancer diagnosis: to focus on living or to focus on dying. There are so many problems and so much confusion when told after a fall or a blood test or something else that seems otherwise innocuous that your loved one has advanced stage 4 cancer.
The worst thing about a late-stage diagnosis is time, or the lack thereof. Not just the time left for a cancer victim to live, but the time available to make decisions.
The first decision--to treat or go on hospice--is a significant one, and there is often no time to really think in through. From my own experience with more than one relative diagnosed with more than one kind of cancer at an advanced stage, there is an automatic, nearly instinctive choice made, not a reasoned one. Got insurance? Treat the cancer. Don't have insurance? Don't treat the cancer. Those are clearly not the most logical or even medically best or viable criteria, but when there is limited time to think about anything, those are the easy criteria to reach for, rather than trying to determine the best way to spend the last few weeks or months (or, as the hope with treatment goes, perhaps years as one of the 5% who make it past one year or five of them). To complicate matters, oncologists and medical specialists often are afraid to be direct with patients about their chances for survival or to give them sufficient information immediately to make the immediate choices before them wisely. As Donald Brand writes, "gingerly handling of harsh facts when [medical personnel] talk with patients ... [means that] these cancer patients typically lack an understanding of their poor prognosis and the limited effectiveness of most available treatments, possibly compromising their ability to make informed choices."
An important part of that first decision whether to treat or go on hospice is whether or not the anticipated side effects of treatment are acceptable to the patient. In our case, we decided to try out the treatment (chemotherapy) proposed by the oncologist and made a decision based on Carl's reactions to the therapy. Although the oncologist did tell us that Carl's cancer at that stage was incurable, we placed great hope (as the very brief time left for him would tell, we misplaced great hope) in the therapy, especially when it made Carl feel better and produced no side effects. We assumed it was stopping the cancer, but it was not. We found out after only three treatments, mainly because Carl fell and was taken to the hospital, triggering scans which told a disappointing story.
At the same time, speeding from diagnosis in March to death in August, with a new deterioration evident every couple of weeks meant new decisions every week -- what to purchase, where to get it, how to fund it if insurance would not, and whether to forego it.
On the walking plane alone, Carl went from needing a cane to needing a walker to needing a wheelchair to needing to be pushed to, ultimately, needing a Hoyer life. I went from supporting to holding steady to pulling up to lifting and finally to being unable to help, given my being half his weight and a foot shorter, in ways Carl would have preferred. By then, our tall and strong son-in-law had come to stay with us for Carl's remaining days (his remaining time was, alas, not weeks, but days), and he helped me with the Hoyer lift.
On the diet plane, Carl went, again in weeks alone, from a hearty appetite and eating whatever he wanted to restricting his diet to manage hypercalcemia to restricting his diet to adding and subtracting from his diet to manage cancer to dealing with severe loss of appetite (though not loss of weight--that happened before the cancer was discovered) to cessation of eating a few days before dying. (Barbara Karnes book, Gone from My Sight, was very helpful in understanding the last month of Carl's life as it passed before our eyes.)
On the bodily function plane, Carl went from semi-incontinence and multiple visits to a urologist at Stanford, an hour's drive away, to complete incontinence and diapering--a difficulty in itself because of the need to track down bariatric pampers. The doctors were willing to fight alongside Carl as long as he wanted to fight. Looking back, I wonder how much of that fighting was a smart decision (those two paths, again), but at that time, we assumed months and a year or two ahead of us. We were very much out of sync with understanding the rate of Carl's deterioration, in part because we had no thinking time, just time to react, and then just barely.
Likewise, Carl went from self-toileting, to needing to be supported, to needing to have pampers removed and put on while standing, to having his butt wiped, to--and he so hated and resisted--to soiling his pampers and being cleaned and washed. He made that transition at the subacute care facility, mainly because they forced it on him, and so he was eager to get home on hospice once the oncologist made it clear that chemotherapy had been ineffective and there was not a logical path forward to a cure but rather the logical path led to hospice. So, we brought him home, where he managed to survive another 10 days, the last three in and out of awareness. The home hospice decision, too, had to be made with semi-thought. We had only a few hours to decide, not because the medical staff pushed us but because time was passing so rapidly and deterioration taking place so quickly that had we waited, there would have been no decision left to make. We knew that Carl wanted to be home, would be more comfortable at home, and getting hospice services going would take time that we did not have. So, we made one more, final, quick, partially considered decision (in this case, the right one, we all believe).
Looking back, there are some many different ways we could have gone. There were different decisions we could have time. Having no time means making most decisions intuitively and with one's gut, not logically and with one's mind.
It was what it was. We did our best not to fall out of the roller coaster, but IF ONLY...
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Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness; updates and additional information are added every week.
As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story, "Cancer Diary," which will also be open to guest posts.