June draws to a close. July waits patiently to launch Summer’s assault at the flesh and minds of us all. We each prepare as best we can…matinee movies, swimming pools, air conditioners, sun screen and sangria…. We use whatever works, and often, too, what does not. This July that may include Transformers 3, but I’ll leave the reviews to the critics.
I enjoy Summer least of the four seasons, mostly because I don’t have a yard. I don’t have space for a proper (or even a modest) garden; nothing to mow; nowhere I can set the grill for a good barbecue; no dog with whom to play. The things that mean summertime to me are currently out of practical reach. During the seven years we’ve lived in Chicago these factors have grown increasingly discouraging. My patience has grown exponentially thin. I have been dreading what Nature has up her sleeve this year especially because it will be my first summer since The Diagnosis. How will it effect me? Will Chicago’s pending transformation into urban armpit exacerbate my flinty immune system and render my myelin susceptible to attack? I can keep our apartment relatively climate controlled, but my part-time job occasionally puts me outside waiting tables at the hottest part of the day. Are there new lesions looming on my occipital lobe and cerebellum? Only time can tell, but I will admit I’m a bit anxious.
During the last several months I’ve been very fortunate to meet some compassionate and patient humans via a MS network. I met with one of them today. She’s a field nurse, basically, and came to check my status and progress and answer any questions. Since all this crap hit the fan those eight months ago my questions have evolved. Or at least they’ve gotten more specific, and I’ve been questioning a lot of elements about the whys and wherefores. I gave her those questions today, I’m grateful she was willing and able to be frank with me. Here’s what we discussed:
1. The drug treatment I’m following requires three subcutaneous injections (spaced at least 48 hours apart) over the course of a calendar week. Currently I have lingering symptoms that fluctuate from time to time based on a variety of factors. I asked my FN if these shots every week are truly necessary, since there is currently no known cure for Multiple Sclerosis. Her response was direct. I have to stick with this approach for the foreseeable future because it will slow the progression of the disease. It will help prevent me having another nightmare episode like I experienced last November and December. No one really knows why, of course, but this is a trackable result from continued use of the Rx. So, we’ve got a plan. I’ve got to stick to it.
2. What happens with MS is my autoimmune system gets cracked-out paranoid and starts attacking the protective tissue around my central nervous system’s nerve fibers. No one knows why this happens. I always think of it like in Fantastic Voyage
(released in that long-ago summer of August, 1966. http://www.imdb.com/title/tt0060397/
) at the part where the white blood cells attack the miniaturized submarine, ultimately causing the death of Donald Pleasance. The resulting damage with MS is basically scar tissue that disrupts or ends the cells’ abilities to deliver messages from the brain to the body. This is why I have residual symptoms now. For me, that’s dizziness, vision issues, flaky cognition. For other folks it could be totally different. What she explained to me today, and I hadn’t really understood before is that this drug protocol can heal the damaged parts of my brain.
It doesn’t cure MS, but it can repair the parts that have been affected. If you’ve ever had vertigo or an inner ear infection or a stroke or any other type of neurological whatnot, I know you realize how stupendous that is! It is absolute goose bump material.
3. I’ve explained on here before that Multiple Sclerosis is not categorized as a curable disease. And currently, certainly, there is no cure. There are things that are known, but mostly things that are theorized. It’s quite nerve wracking on the face of it. But, I also know that research and technology have been in a sprint toward improvement for the last decade or so. I’m new to this whole thing, but any person who’s had MS for any length of time can likely tell you that things have been changing rapidly for the last several years. New treatments and improved methods of diagnosis and research all contribute. I mentioned today that I’m trying to adjust to my remaining symptoms and the looming possibility of new episodes as simple facts of life. The FN told me that she believes, however, that within ten or 15 years she’ll be out of a job because there will be a cure. Again…no guarantees, but….
4. Everyone who knows me well at all understands how I feel about animal cruelty and the use of animals for medical testing. It makes me sick to my stomach. While the FN and I discussed the possible developments with the drug, I had to broach the subject of the wee Chinese Hamsters that provide the cellular material that acts as vehicle for the interferon beta gene the drug is made of. This has been a deal breaker for me since I first read about it in the prescribing information pamphlet, but…Husband wouldn’t hear any justification for me stopping the drugs. It hasn’t been a fun discussion in our home, and every time I give myself a shot I feel sick to my stomach at the hypocrisy. So I asked today how the cells are harvested, and what the process does to the hamsters.
All done in test tubes, she said. No hamsters were harmed in the making of these drugs.
Test tubes, not tiny Matrix-style milking machines, or scalpels and biopsy needles. As it happens, she has a patient who has two Chinese hamsters of her own. I’ve attached a photo for you to see another. Pretty darn cute, and apparently it and I have common cell structures. Which is strange and weird all on its own, but to know these little creatures aren’t being maimed or discomfited on my behalf also qualifies–in my book–as goose bump material. It means I can face the three months between now and my next MRI without guilt that I’m an affront to Mother Nature and some of her littlest friends. It will help me stick to the plan. It will help me be patient. And if a cure does come, and it comes in the form of a super-miniaturized nuclear submarine with Rachel Welch on board…well…I can safely say stranger things have happened. All the summertime blockbusters say so.