There are a few people in the Multiple Myeloma field that I know by virtue of their involvement in the illness, rather than some more personal level. These people find a spot in my heart and mind, probably because I can relate to their situations and my exposure to them had been a good one. Pat Killingsworth, a fellow blogger and a feature writer at the Myeloma Beacon, is one of these people. This summer he underwent the physically draining and uncomfortable stem cell replacement process in hopes of defeating the cancer. Sadly, the stem cell replacement didn’t work, and the treatment, in fact, made the multiple myeloma in him worse.
I relate to this; the same thing happened to me, although it was chemotherapy that ignited a rampage of the disease rather than stem cell replacement. But there is a truth in this and that is, fairly often, our attempts to defeat the disease make it worse instead. You don’t read a lot about the failure of medicine to help a class of the afflicted. One of the things I dislike very much about the field of medical writing for the mainstream is that it tends to hide the realities of cancers in favor of pumping positive tones into the conversations. It’s like telling a child not to worry, that everything will be just fine even though the house is on fire and the family pet is dead, everything will be okay in the end. It’s just plain wrong.
It’s not that I believe that people should only hear the negatives of a situation. That’s simply not true. Instead, I believe that plain truth is what should be employed because people have historically done a lot better when armed with the facts than they do with an armload of blue sky. I get very angry when writers misrepresent the facts, and that happens all too often. One writer who shows up with consistency in one of the online Myeloma information sites has gone so far as to write or title articles indicating that a cure is just around the corner when the only thing around the corner is another corner. It seems like every time I read an article that really antagonizes me, this woman’s by line appears in the masthead. But then, a quick look at her credentials demonstrates that she has no business at all writing about medical topics. I have mentioned her name in past articles here on Deludia because I feel she so damages the credibility needed in medical writing, even whimsey, that she should go work as a technician for Dow-Corning or a counter person at 7-11. Anything but where she is. If she were an honest writer, I would welcome her into the fold the way I do every writer, even the ones who articles I don’t particularly like. But she is not a writer, instead she takes the press releases from various medical sources and then adds sensational headlines and tweaks the text the way she sees so many new outlets do. That’s why I claim that she is not an honest writer. She is not writing, she’s taking the words of self praise from commercial entities and then making them even less truthful. We’re all taking about people’s lives and the quality of life, and so bullshit has no place at in the mix.
I like Pat Killingsworth’s materials because the man does his best to offer his readers hope, but does it in a way that is honest and seeks to find the positive in the failure. Then again, I think it takes someone with Mutlitple Myeloma to write about the patients aspects of Multiple Myeloma. All others are merely guessing or imagining. That’s not to say that no one but a victim can have an opinion, it says that no one can deal with information about how patients feel better than the patients themselves. As a result, much of what we see written are inspirational peices which have no value at preparing people for the experiences of they or a family member having cancer. For the most part, most articles are merely advertisements for the medical and drug community, although the publishers would, I’m sure, protest the assertion. But then, they would to try and improve their credibility.
The truth is, that there has been little progress recently when it comes to Multiple Myeloma. The articles out there would have us believe that all sorts of improvements are on the way, but then, they have been on the way since I was diagnosed years ago. For tools we have Thalidomide and its analogs (Revlimid, for instance) and we have Velcade and we have Doxorubicin, although few doctors use Doxo anymore because of its high physical toll and low efficacy. To that we add sterioids, like Dex, to help the body process the chemo. The so called improvements are merely mixing the chemo compounds, adding Revlimid to Velcade and vice versa, but nothing new is really on the way. In a few years, that will change because research continues. But there is a huge difference between research and patient ready drugs.
Advertising has becomes such a huge component of our lives, that it enters doors to our consciousness in every possible way that advertisers can think of. In movies and television, they call it product placement. And that is what 99% of the materials written about Multiple Myeloma comprise of. The materials are promotional in nature, and because the articles are misclassified as news, the word “advertisement” doesn’t appear anywhere to let readers know that they are consuming opinion and not fact. I tend to believe that everything that a patient needs to know about their cancer could easily be written on a couple of sheets of paper. The rest of the material is oriented to making people feel comfortable about seeking treatment. Let us not forget the billions of dollars involved in medicine. Is it any wonder that the makers of the materials and services would want to reflect themselves in the best light?
So what we have to do is actually look at the historical statistics. They don’t lie and what they say is that only a third of the people who take advantage of the treatments available see any real benefit. Two thirds of the people see no benefit to therapy and a significant portion of these folks die. Period.
There is a lot we can do to make ourselves more comfortable. There is a lot we can do therapy-wise in search of remission. We do have the opportunity to lead productive lives whether or not treatment works for us. But that doesn’t mean necessarily that our lives will be comfortable or lengthy. It is up to the people who write about Multiple Myeloma to spread the word of how to improve things rather than to canonize the medical field.