Op.ed.
About 900 words
We need more than NET Cancer Awareness Day
By Harry Proudfoot
I cannot describe what it was like to watch my wife die of NET cancer. I cannot explain to 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.
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.
When you are fighting a disease, 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 alone 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 those diagnosed now at Stage 0: Frightening at the time, but something they can think of in the same way we think 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.
But the NET cancer that took my wife from me — took her from her students — is every bit as deadly, for all that it is less well-known and slower moving — and has left me every bit as bereft as if she had died of breast cancer.
I know we do not have enough NET researchers to absorb the level of investment breast, lung and prostate cancer get — or anything like it — today. I know the cost-benefit analysis argument. I know drug companies are driven by profit. And I know, for now at least, there is no great profit to be made from NET cancer patients.
But the what-ifs disturb my sleep. What if the NCI had not needed to cut costs in 1968 — or not done so by eliminating funding for supposedly rare forms of cancer? What if we had put even $5 million a year in current money into NET cancer over the last 44 years? Or $10 million? What if doctors had been even fractionally more aware of NET cancer 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 medical training programs.
But most of all, 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 toward a cure for NET cancer, race in ways that can only be done with more resources than we have now. I know that it will be hard. Finding a cure is going to be like fighting the Hydra: every time we solve one problem, another two heads will grow in to take its place.
But right now the resources we have barely allow us to crawl.
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 or insomnia.
Somewhere out there is a young man or woman who is where Jane was 31 years ago. He or 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 them more than luck, more than an Awareness Day.
We owe them a race for a cure, too.
(This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.
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