Jane and I taught school for over 30 years. There were lots of good things about that experience–but there were bad things as well.
At the last teacher orientation day of our career we were welcomed back with a short speech by a member of the school committee who told us we did not really need more money in the school budget–did not really need an increase in pay or more money for books or lab experiments or equipment–did not really need to think about replacing our 60 year old building–that we had everything we needed to teach our students.
That he said this in one of the most poorly paid school districts in the commonwealth with a per pupil expenditure that struggled to reach–and often during my career did not reach–the state funding mandates–that he said this as a resident of one of the wealthiest communities in the state–put a brutally ugly spin on the opening of that school year for all of the faculty in attendance.
In the two videos I posted links to yesterday and today both doctors make a point of saying the old method of treating NET by watching and waiting and doing nothing is not the way to go–that patients die as a result.
In both videos they talk about the distance we have come in recent years–and I am happy to see that progress.
But I kept coming back to the same lines in my head as I watched them: This came too late for us. That came to late for us. If we had only known about this X years ago. If we had only known about that Y months ago. It would have made such a big difference.
I cannot describe for you what it was like to watch my wife die. I cannot tell you what it was like to tell her there was nothing more we could do. I cannot tell you what it is like to come home to a truly empty house or to wake up in a bed empty of her presence. It is different from a break-up or a divorce. There love has fled–but the once beloved is still alive: you can literally hear their voice, literally see their physical form.
And I do not know–cannot know–what it was like for her. As someone said to me when we were
in the hospital, we cannot know and understand what a patient feels any more than they can know and understand what we as caregivers feel. But I did see the outward signs of what it was doing to her.
When you are fighting a disease–just as when you are teaching school–money matters. No one would believe for an instant that we would be in the same place we are now with breast cancer without having spent the oodles of money we have spent on it. The Komen Race for the Cure raised $1 billion last year. The National Cancer Institute kicked in $600 million on top of that. The American Cancer Society put in a substantial amount on top of that. And those are just the big spenders.
That money is leading us to a day when breast cancer is, for all its patients, what it was for my sister-in-law: something she thinks of in the same way that she thinks of getting through a bad cold. And there will be no one on the planet happier about that moment than I. I have already lost too many friends to that awfulness. My students have lost too many mothers.
I know we do not have enough NET researchers to absorb that level of investment–or anything like it–today. I know the cost-benefit analysis argument. I know drug companies are driven by profit and that, for now at least, there is no great profit to be made from NET patients.
But the what ifs disturb my sleep. What if the NCI had not needed to cut costs in 1968? What if we had put even $5 million a year in current money into NET over the last 43 years? Or $10 million? What if doctors had been even fractionally more aware of NET in 1980? What if every patient presenting with IBS symptoms had routinely been given a 5-HIAA test then? What if…? Would Jane still be here?
Money matters. It buys research. It buys awareness. It buys equipment. It buys testing. It buys space in medical textbooks and medical training programs. It buys lives–and the quality of those lives.
I am not a doctor. I cannot say what it means to lose a patient. I cannot imagine what it is like to be endlessly fighting diseases and losing patients to them. I am not a nurse. I cannot imagine what it is like to give that intimate level of care day after day after day to patient after patient after patient–and see too many of them lose that fight at too young an age.
And maybe I am too close to my own loss to see things clearly. But I want us to race–not crawl–toward a cure for NET. I know that will be hard. Finding a cure is going to be like fighting the Hydra–every time you solve one problem another two heads will grow in to take its place.
So I m willing to race to make this a chronic disease that we can manage the way we manage diabetes or AIDS.
But crawling for that–other than literally to raise money and awareness–is not something I am willing to do.
Somewhere out there right now there is another couple in the same position Jane and I were in one year ago. They are strapping themselves in for what will prove their last battle together. They have no idea how hard that battle is going to be.
Somewhere out there is another couple. They are where Jane and I were two years ago: they know something is wrong, but they don’t know what it is. They are facing their third wrong diagnosis.
Somewhere out there is yet another couple. They are where Jane and I were three years ago–blissfully unaware that there is anything seriously more wrong than an occasional bout of IBS.
Somewhere out there is a young woman who is where Jane was 31 years ago. She has lost some weight and is suffering from awful stomach cramps. If she goes to the right doctor, she has a chance. If she goes to the wrong doctor…
We owe all of them more than watchful, hopeful waiting.
We owe them a race toward a cure.
