Tuesday, September 22, 2015

Update on Mr. Simply, and a bit of backstory -- plus another request

I wrote this e-mail last year about my husband, to his friends:
As most of you probably know by now, Mr. Simply did not come home today. He had a fever, was throwing up, and is confused, so. He held it together pretty well for a visit from Stanley, but trust me when I tell you, he's confused. Also, his pain still isn't well-controlled. He has a pain pump now. Maybe tomorrow.

It is heartening to him how y'all care about him, and your calls and visits have meant more than I can say. Hospice was an incredibly difficult decision to make and even after it was made, continued to be a struggle for him to accept. You know how they always say, 'you have no idea until you have been through it yourself'? I had no idea. No earthly idea.

Here's how we got here from there: As most of y'all may already know, Stage IV cancer is incurable by definition. But sometimes one can hold off the inevitable for a year or even longer, and he tried hard this summer to do just that. He was at an excellent treatment center -- his surgeon from last spring teaches doctors at other clinics around the nation how to do the kind of surgery Mr. Simply had, just for one example. And the study he was almost in is cutting edge, internationally.

We thought we had more time -- maybe even as much as two years more.

But it was already too late last year for a cure -- it was already in his circulatory system, which we suspected might be the case from the pathology report then. So when it came back, any treatment would be what they call "palliative," which is to say, it might help with symptoms and might buy him some extra time. At that point, his prognosis was approximately six months to live without treatment, nine or so with -- although there were a few folk in studies still living at 18 and 20 months, mets to the bone are a poor prognostic indicator, and he had those right from the beginning of his progression. He'd had a new biopsy and the results came back that he had a couple of mutations with studies going for them, but they were out of state and therefore completely unreachable for us. The trouble was also that most of the most important studies going on were for driver mutations he didn't have. And in any event, you always want to try the proven treatments before the unproven. Studies are a last resort, for obvious reasons.

Ergo, the chemo he got. This was the recommended "salvage" therapy for people who've had chemo before and had recurrences or progressions. And it failed. Spectacularly. Not only did it not slow the cancer down, it put him in the hospital and he experienced "extensive" spread of his cancer while he was in the treatment so that by this time, I guess around mid-summer, he now had mets to multiple ribs, his clavicle, his kidney, the one already on his liver and the ones on his spine were growing fast, a new one on his pelvis, and one on his skull.

Next they tried to get him in the cutting edge study going on right here, for which he also had the correct markers in his liver tumor biopsy, but he was already too sick. His pain was not under control (one of many requirements to enter most studies) and by the time they got that in order (temporarily, as it turned out) and tried to get him into the study a second time, his labs were abnormal (another requirement -- that all your labs be in range). He was going to make a last-ditch effort, starting a round of chemo last Thursday, to shrink the tumors and get the pain and labs back within parameters and attempt the study one more time, but he didn't make it to Thursday.

You have to be ambulatory for chemo, and besides it would have taken weeks for it to work, if it did at all (for this last one there was a less than 5% chance that it would even slow the progression, never mind reduce his tumor load) and he could not have stood the pain for that long. Nobody could. It was so bad that when the rescue crew knelt on the bed to check his vitals, the mattress movement alone made him scream.

As sick as he is, there is no study he will qualify for now. And there is absolutely no scientific support for any of the other stuff such as drinking vinegar, taking thousands of mg of Vitamin C, or even smoking dope, that has been suggested to us this summer. Everybody's professor who cured himself with C is an urban myth tracing back to Linus Pauling, a professor to be sure, but one who died of cancer while choking down bales of the stuff. And what dope will get you is arrested and your house and car seized. Besides which, in Georgia cancer patients can get the pills by Rx. So why take the risk? Nor do various and sundry Chinese herbs and Korean tree bark or anything else cure cancer. Some even trigger it. There have been some studies done on all of these things, and they are either coming up goose eggs or inconsistent.

Please believe me when I tell you that if there was a treatment out there that would work for him, or a study that would take him, he'd be in it.

His oncologist could no longer control his pain, but hospice can, and it gives him a shot at a peaceful, calm death at home, completely free of pain and surrounded by the people and pets he loves. Any further attempts at treatment will likely only make him sicker, weaken him further, and maybe even kill him sooner -- and in any event he could not possibly do it: By Tuesday, remember, he could no longer get out of bed. How would we get him there? How could he have possibly stood it? When I tell you he was screaming when he tried to get up, I am not exaggerating. He was in agony. They had to shoot him full of Fentanyl before they could move him, and he was still crying out.

Hospice has that pain down to next to nothing, and is the only route by which he could have gotten there.

His oncologist told us last week that he would likely live "less than three months". One week of that has already gone by. He can spend the last weeks of his life in agony, getting treatments that have a 19:1 chance of making him worse instead of better, traveling by ambulance (it takes a minimum of four agonizing transfers to go anywhere and come back, don't forget) [at $900 each way -Ed.] to consult quacks or at best new doctors who are not going to be any better than the ones he's got. . . or he can spend it at home, comfortable and in the loving embrace of you and me and the animals. Studies do show that people who go into hospice early not only have a better quality of life in their remaining days but also live slightly longer than people who continue to pursue aggressive treatment to the bitter end.

So the best gift we can give him now, as hard as it is going to be to let him go, is our acceptance of his death, our compassion, and our support.

To that end, I am begging you, please do not talk to him any more about trials, cures, miracles, or 'fighting'. When you do, you are implying that he, his doctors, and I have not already done everything we/they could, and I'm sure, knowing you all as I do, that that's not what you mean to say at all. I know you are all only trying to help, that you do have his best interests at heart, that you only love him and want to see him live.

He has already been brave and tough -- braver and tougher than you will ever know. He went through the pain of the surgery, and the sickness from the chemo (and the pain from the neulasta each time) and all the scans and the pain from the mets in his bones and and and. All without flinching or complaining or any sign of fear. He's fought his fight, and fought it far better than I ever would have had the shoe been on the other foot. Leave him be on that one, please: Stop implying to him that he's somehow giving up. He hasn't. He has been and continues to be, even in the face of death, the single most courageous person I have ever known.

Hospice is his miracle now, dying with grace and dignity is his battle. All he needs from you for this to happen is your loving support.

Thank you, from the bottom of my heart.