Imagine if you had a really amazing, complex and intriguing personal story--this one, happens to concern your medical state--and you were a writer who had found ways to turn it into at least three distinct stories (for now), to write these stories, and then to find out that they're appreciated by those who commissioned them but sitting on someone's hard drive for an undisclosed amount of time because, well, the magazine business is pretty shitty for most people involved--at home on their computers, writing the stories, and in the magazine's offices, editing the stories--what would you do? Would you want to publish these stories on your blog? Especially now that your blog won a lot of attention from a positive blurb on Typepad's homepage? Or would you be patient--and ethical, obviously--and hope that one of the mags will slot you in along with that Justin Timberlake interview sooner than you, well, um...
Let's just leave it at that. I supposed I should explain that yes, these stories don't just deal with health, but with a very trying and serious medical situation that has become chronic and weird and multi-faceted and way more bizarre and scary for all involved (me and doctors) than cancer. Cancer, in fact, is sort of simple compared to all of this. So can you see the urgency to make something happen after six months of waiting to see certain stories published? I appreciate all the consideration these editors--and their editors--give and will hopefully continue to give to me. But a blog, well...A blog just isn't a tool for a writer to have if he wants to write about an urgent concern. If I didn't have this blog, I'd still be impatient to see some of these stories come to light, but I wouldn't know I could publish them myself and have a lot of people read them. It's a distinctly contemporary dilemma. So to answer some friends and some family and some readers who wonder what's going on with me --trust me, I'm no drama queen, but honestly, I want to give my large magazine stories exclusive access to ruminations on the the nature of my illness, and the drama surrounding it--I will offer a little ditty about what my week was like, because it has other, more timely ramifications as you'll see.
For starters, I am currently undergoing treatment with an extremely expensive intravenous medication called IVIg. Those four letters stand for "intravenous immunoglobulins." Some people also call the stuff "gamma globulins." The reason I'm discussing this is because it's an unusually elusive infusion, and I can't think of a magazine that would find this cool or sexy enough to write up. IVIg is a blood product, made from from donor plasma, that contains antibodies we all have--antibodies even I have despite having weathered a stem-cell bone marrow transplant ten years ago.
The idea, and no one is totally sure of how this works, is that the new antibodies will re-program your immune system--some people have a low-functioning immune system, and some people, like those suffering from auto-immune diseases, have an overactive but, well, confused immune system that attacks certain systems for no good reason. IVIg is intriguing because it does so much for so many illnesses--from auto-immune disorders people have never heard of to the biggies, from HIV to some cancers and now even Alzheimers--but it's still a mystery how it actually fixes you. As a cancer survivor, I wasn't looking forward to it, I admit. After years and years of chemo that almost killed me, I didn't especially look forward to having anything--much less a mystery fluid--sent into my bloodstream straightaway.
After a while, you begin to think that "intravenous" means poison, begin to consider the entire process deathly, instead of supportive. Yet IVIg is, at its core, an immunotherapy, and immunotherapy is the antithesis of chemo, and the future of medicine. Chemo kills. Everything. And this, well, this just...helps. But how? I needed to know. Well, thanks to my friend Hannah, I read a story this week about a research study detailing how one group of doctors may have figured it out--and, at the same time, how to turn the arduous multi-hour process into a short injection you'd receive at a doctor's office.
I, for one, have just begun the traditional process of receiving it through my veins at a very slow rate--so as to curb side effects. But even though this may just be the beginning, let me tell you that I have only felt good so far. Strong. A little restless and headachy, but who can attribute that to medication, when you're stuck in a chair for eight hours hooked up to an IV as you receive e-mails from people asking you to complete mundane work-related tasks when all you really want to do is surf? But let's get this straight here. I'm not writing about this topic to induce sympathy. It just seems as if so few people know about IVIg, so few people write about it (save for those on disease society message boards), and that so few doctors consider it a smart decision. (Who knows if some of the more close-minded are on the take from the insurance companies, or if they just don't like to prescribe anything that could get them mildly involved in their patient's progress because, well, that would make things less than simple.)
But this isn't a disease society message board, and I'm not venting or asking for help from fellow patients. I think IVIg is an uncommonly engaging topic that deserves more widespread discussion--especially since it's helping people with MS, neuropathies, very common auto-immune diseases, and the even more rare immunologic disorders. I also think that anyone who has had chemo needs to reclaim their automatic psychological response to the idea of intravenous medication. We were trained incorrectly in the 80s and 9os. IV stuff isn't all bad--not all murderous and cell-killing. And if you look at it in a new way--as if you're getting pumped full of the good--you may even look forward to it.
This is
a mindset change I've had to undergo this winter, and it's one I'm
thankful for. The antibodies will help. But what will help more,
without cooking up a pot of Shallot-flavored soup for the soul, will
be the way I receive it--whether it takes eight hours to drip into me,
or one day becomes a shot--or even a pill. For now, it seems
like the end may be near for those long infusion center hours that
remind you or your loved ones of chemo's dog days. The drug companies are motivated,
an insider tells me, to turn IVIg into a quick application. And it
couldn't happen at a better time--for me, and the world--as it seems
like more and more people find themselves stricken with
immunologic disorders. So consider this a Public Service Message: IVIg
is here, it helps, and it needs more widespread familiarity now that we
all know it works--well after the FDA has approved it. This isn't
alternative medicine; this is contemporary medicine.
P.S. How bizarre is it that the company that develops the images of medical procedures (see above) is called A.D.A.M.?!
