A Once-Familiar Routine

IV

Later this morning, after having spent a couple of hours sitting in a comfy chair hooked up to a centrifuge for the apheresis procedure, I will receive my second full dose of Ocrevus. There is nothing remarkable about this, other than the fact that I don’t remember how I am going to feel for the remainder of the weekend. This is ironic because there was a time when I knew exactly how the weekend was going to play out, and planned accordingly.

From 2009 through last September, a span of over eight years, getting a Friday infusion was a monthly ritual. The drugs were different, but the routine was the same: get hooked up for the apheresis, sit for an hour and a half or so,  then have the sewing needle in the crook of my elbow in one arm removed while the remaining smaller needle in the other arm would be hooked up to an IV bag. Then I’d sit another couple of hours, napping for most of the time, while the drugs were administered.

When it was over, I’d drive home and settle in for the weekend. Friday evenings were spent lounging as a heavy fatigue set in. Other than dealing with periodic hiccups and feeling very warm on Saturday, I putter around the house or do a few errands that weren’t too taxing, just to make myself feel useful.

Sunday was a lost day, when the brunt of the chemo’s side effects hit. My head felt like mush, crushing fatigue would set in and I’d spend all day in bed, either watching television or nodding off. One of the first posts I wrote for this blog described in detail what those Sunday’s felt like. Refer to the chemo drug paragraph of that post if you want to refresh your memories.

The worst thing about this regiment was that it killed one weekend a month. This may not sound like a big deal, but trust me, it was. An every four or five week commitment doesn’t sound bad on the surface, but these infusion weekends often fell at an inopportune time, especially during the holiday seasons.

What appealed to me about Ocrevus, besides the fact it was supposedly designed to help those of us with the progressive form of MS, was the infusions only occurred every six months. The idea or losing two weekends a year instead of twelve sounded like Nirvana. If I’m being completely honest, that fact by itself swayed me to make the switch.

I still get the plasma transfers every month, so it isn’t like I’m appointment free. But those only last an hour and a half and, other than being very tired the evening after the treatment, there are no side effects, and I am as good as new the following day. I have more freedom because I don’t have to worry about having to reschedule a weekend event or the infusion itself because a personal conflict. I also feel less of a burden to K, who had to plan her weekends around an absentee husband.

I’m a little more apprehensive about the getting these infusions than I used to be, and I attribute that to not remembering what tomorrow and Sunday will be like. I have a hard time remembering what I ate for dinner yesterday, so trying to remember what the weekend following an infusion I had six months ago was like is futile

I believe today and tomorrow will be fairly benign, and that Sunday will suck, but what will the degree of suckiness be? Will it be a shutdown Sunday where I don’t leave the bedroom except to go pee, or will it be worse? The first few times I had my original infusions, I could barely open my eyes, my head felt like it weighed a thousand pounds, and when I was mobile, I felt like I was walking in quicksand.

Will it be that way again on Sunday? Will I have a better experience because my body isn’t saturated with the stuff? Or will it be worse because my body isn’t used to having these heavy duty meds infused?

This leads to the question of whether taking these meds is worthwhile. I have never felt remarkably better after the infusions, and while I assume these meds are helping my condition, I can’t say for a fact that they are. What I do know is my progression has proceeded at a snail’s pace for the past eleven years, but the big question is if that is  because of pharmacology,  or is it simply the nature of my MS beast, and taking or not taking meds doesn’t influence it one bit.

One of these days I’ll either learn the answer to that question, or simply get tired of taking this stuff and get off the pharmacology treadmill. For now I will stay the course, but maybe I should take notes about how I felt this weekend that I can refer to next March, when the next infusion is due.

That way I will know what to expect instead of guessing what it is going to be like. The more anxiety I can eliminate from this equation, the better.

 

 

A Date With The Wizard of Oz.

MJ

Ohhhhhhhhhhhhhh, we’re off to see the Wizard, the wonderful Wizard of Oz. We hear he is a whiz of a Wiz if ever a Wiz there was. If ever oh ever a Wiz there was, the Wizard of Oz is one because, because, because, because, because, because……Because of the wonder things he does.

Over the last ten plus years this body has ingested or been shot up with a host of pharmaceutical products. The ones I can remember are:  Interferons (Betaseron and Copaxone); Steroids (solumedrol); A variety of pills (Low Dose Naltrexone, Super Biotin, Ampyra); Chemotherapy Agents (Cytoxan, Ocrevus). Add apheresis (plasma transfers) to the mix and you can see that I’m not shy or afraid of trying different things to try to contain this beast.

There has however been one product that I have shunned for years, and I’m not sure why. It is one I was intimately familiar with for a ten year period starting my freshman year in college, but I never pursued it because I didn’t think I needed it. Going that route would simply be taking advantage of the fact that my condition allowed me to. In other words, I’d be taking this product for the wrong reasons, and while this may not have been as strongly entrenched when I was young, I am very big on what is right and what is wrong.

But I finally relented, and will be visiting what I have coined the Land of Oz., and I don’t mean Oz as in the movie. The Oz. I am referring to is the abbreviation of ounce, or in this case, ounces. Yes, I will be visiting a medical marijuana dispensary for the first time Saturday morning.

There are several reasons for the change of heart. I ran them all  by my neurologist and got the thumbs up to proceed, otherwise I would dropped the matter. As a matter of fact, their office processed the paperwork, sent their portion in, and sent me the link for the stuff that I had to complete the next day. Those items were completed and submitted on-line within twenty four hours, along with a non-refundable $100 payment, and I received my temporary permit via email last week. The entire process took about two weeks.

Why am I doing this? My restless leg is becoming increasingly annoying and uncomfortable, my back and hip are aching constantly, my leg foot and toes often cramp, I think I am more anxious, and K has repeatedly said my level of crankiness and intolerance is increasing. That was news to me, but when she pointed this out I began paying attention to my moods, and wouldn’t you know it? She was right. So we will give this a whirl and see if any of these things improve.

I’m looking forward to the visit, primarily to see what these places are like. I have no idea what to expect, no idea if the “product” will be displayed, and have only a rudimentary understanding of the options available to me. If I’m not mistaken, there will be a lot of items to choose from, which will be fascinating. The last time I was involved in this kind of purchase, it was over thirty years ago, an ounce of the “product” was in a baggie, and the cost was $40. That seems like a lifetime ago.

Now I can legally purchase two and an half ounces of the stuff every month without any felon’s guilt. From what I understand, many of the options don’t even produce a buzz, which is probably the way to go. But there is a part of me that would like to get the product that has the highest THC content so I can once again go cruising with the blimp, an expression from my college days, and completely tune out. Maybe I can get a little of this, and a little of that, something for any occasion.

Having said that, I really don’t know what is or is not allowed. What I do know is that I will be meeting with one of the pharmacists when I arrive for what I presume will be an orientation, a review of what they have, and what might work best for what I am trying to address. I wasn’t even sure if would walk out the building with anything, or have to wait and come back when whatever they ordered is received, but the person I spoke with made if very clear that I was to bring cash, a debit card or a checkbook. No credit cards are accepted. From this I have drawn two conclusions.

The first is that I will be bringing a month supply of something with me when I return from the visit, and the other is that I am in for sticker shock.

To be continued….

 

Thoughts On Pharmacology and The Search For A Cure

Cash

In the ten years since I was diagnosed, I have tried eight different medications to manage my symptoms and progression, and never gave much it much thought or questioned my choices until the last few weeks. What changed? I’ve noticed a number of posts from various bloggers about their experiences with the drugs they take for MS and other chronic conditions, and two truths have become painfully obvious.

The first is that pharmaceuticals are the primary, and in some cases, the only option provided to us. The second is that trying these drugs is similar to purchasing a lottery ticket, in the hope of hitting the jackpot, only to be left with a hangover.

I’m not anti-drug, just anti Big-Pharma. After all, doesn’t it seem ludicrous that the entire idea of legalizing marijuana, medical or otherwise, still meets a ton of resistance as it’s labeled as a gateway drug, yet scripts of opiates are dispensed like candy, creating an addictive culture that turns to heroin when the supply is cut off, and the outrage is muted? Don’t get me started.

As I was saying, I’m not anti-drug, and there have been a handful that have helped me, but let’s be honest. Even with the drugs the FDA has approved, we’re still participating in a never-ending clinical trial, serving as lab rats or human petri dishes for Big-Pharma and the medical community in general.

Is that a harsh assessment? Maybe, but we willingly take stuff we know may not do a damn thing, and make us feel like shit in the process, but don’t think twice if that occurs, and gladly move onto the next option. Maybe that option will be better, but if not we keep trying other things until we find something that works even a little. After all, what’s the alternative?

I know that the stuff that I’ve been putting into my body all these years isn’t healthy. The chemo I took for over eight years isn’t good for the liver, and necessitated monthly blood tests to ensure my liver enzymes weren’t all fucked up. I know Ocrevus isn’t much better. So yes, I do think about what the long term health consequences of what I’m doing might be, but that does not get in the way of continuing the path I am on or trying something new. It’s a safe bet I’m not the only person who feels this way.

That may sound desperate to someone not living this life, and I know holistic options exist, diet for one, that might be worth pursuing. But I’m brainwashed like everyone else in thinking that pharmacology is the best option. Either that or I’m following the gospel of my neurologist without reservations. I trust him and think, perhaps foolishly, that if the drugs were doing more harm than good he’d tell me.

Having said that, I believe that pharmacology is not going to provide the ultimate solution if a “cure” is ever discovered. I’m of the opinion that if a cure is out there, stem cells will provide the key. After all, if you’re going to try to regenerate myelin, I doubt a pill is going to do it. Doesn’t it make  sense that something organic will create something new and better? Be that as it may, I’m not holding my breath hoping that a cure will either be found in my lifetime, or happen before I’m primed for the Dirt Nap.

As far as brain lesions are concerned, I don’t think they will ever crack that nut. That organ is the final frontier in the medical community, and we are light years away from truly understanding how to treat it.

I suspect all of us ultimately reach a point where we’ll get off the medical treadmill of procedures, injections, infusions, and pills. I know the day will come where I’ll jump off and focus on rest, diet and more holistic approaches. But I will first have to conclude the results no longer justify the effort, and am tired of going to hospitals, tired of getting poked, prodded and stuck, and tired of the expense.

Reading the posts I mentioned also made me reflect on the economics surrounding finding a cure for anything. More specifically, there are millions being poured into research through grants and donations to find the elusive cure for various chronic and deadly diseases, cancer and MS to name two,  but don’t you sometimes think it isn’t in a lot of people’s best interest to actually find one?

If Big Pharma found the answer, which I doubt will happen but let’s stay on that thread, then that premise doesn’t ring true. I mean, can you imagine what they would charge for the magic pill or shot that prevents cancer or cures MS? They could name their price and nobody would flinch.

But what if, as I believe, the answers do not lie with pharmacology. What would happen to the big organizations that champion the chase for a cure? How much would they lose in funding and donations?

My intent is not to imply that those who run these groups are only in it for the money, but let’s be realistic. Isn’t it in their best financial interests to keep chasing that cure than to actually discover one? After all, a significant percentage of revenue goes to overhead for some of these organizations. What happens if the money runs out or the flow is reduced to a trickle? Maybe I’m in a cynical mood tonight. I’d like to think it wouldn’t matter, but isn’t that naive?

It’s an interesting discussion, but probably pointless. After all, the medical community would actually have to find something that works, and in the immortal words of the neurologist I saw at Johns Hopkins during the early stages of my MS journey, when has medicine cured anything?