Month: July 2020

Evansville Heat

EVV

I’ve been a bit of a sloth lately. I don’t have a lot of energy or motivation to do much of anything. Some of it has to do with an upcoming event that we have literally been waiting months for and has lately monopolized my thoughts, (which I will write about soon), but most of it has to do with the weather.

I bitch and write about the heat and humidity every summer, primarily because the MS makes dealing with it infinitely worse, but we’re not soft up here in New England. We get our share of frigid temps in the winter and hot, humid days in the summer. But what is noteworthy about this recent stretch is how long it has lasted. We are heading into a second week of 90+ degree heat with a heat index sniffing and sometimes exceeding 100. We aren’t even through July, and this is shaping up to be one of the hottest summers on record, which has brought back some memories.

I moved in Evansville, Indiana in the mid 1990’s when a career opportunity arose, and lived there for three years before returning to Connecticut. I enjoyed my time there. The people were wonderful, the geography was significantly different but pretty in its own way as the lack of hills and trees created vistas of flat, open expanses. I loved the central time zone too, because I could usually watch whatever I wanted and still get to bed by 11, which allowed a full-night’s sleep. The only downside to living there were the summers.

If you look at the map of the United States, Indiana is shaped like the letter J, and Evansville is near the tip of that J, tucked along the banks of the Ohio River, in the southwest corner of the state bordering Kentucky and Illinois. For comparison’s sake, it’s longitude would be equivalent to the Virginia/North Carolina border to the east and Southern Nevada to the west. I was warned the summers were hot, but there was a world of difference between hearing that and experiencing it. I have NEVER lived in a place where the heat was that oppressive.

I have always preferred to sweat then freeze, but those summers took some getting used to. From most of Memorial Day to Labor Day, the daytime temps ranged from the mid to upper 80’s to triple digits, and it felt as if the humidity matched the temps. It is the only place I have ever lived where it felt hotter at 7PM than it was at 3PM. Being landlocked, the heat just kept building and building throughout the day, and venturing outdoors felt like walking into a furnace. The heat and humidity was almost suffocating. You’d burst into perspiration as soon as you stepped outside, and soon thereafter you felt like you were wrapped in a moist, hot, steaming blanket. It’s no wonder that part of the country gets horrific thunderstorms and tornados. The heat has nowhere to go.

How hot was it? In 1997 we built our first house, but had a falling out with the contractor and fired him before the roof was completed. To make a long story short, my father-in-law became the job site foreman, K took over the general contractor duties, and I spent whatever free time I had at the building site.

I took one week off in July to lend a hand and clean the site of all construction debris. Each day, I would arrive at seven, work until two or three, and typically bring two gallons of Gatorade with me because I knew I’d lose a lot of fluids and I didn’t want to get dehydrated or cramp up. I’d start guzzling drinking Gatorade around 8 or 9 in the morning, and finish both gallons before I left for the day. The sweat was leaving my body so quickly that I only emptied my bladder once in eight hours while consuming 256 ounces of liquid. When I returned to the apartment and sat after taking a cool shower, my body felt like a limp dishrag. I was completely wrung out.

On the plus side, while it did get chilly in the winter, the temperatures did not get below freezing very often, we didn’t get much snow, and I could spend a February afternoon outdoors and be very comfortable wearing jeans and a sweatshirt.

I enjoyed my time in Evansville, and still think wistfully of those days. We had some great experiences, but have no regrets about coming home, especially now that MS is my constant companion. The summers would have been devastating.  If I’m having a hard time dealing with a New England heat wave, I can’t imagine what coping with the Evansville summers would be like. I’d have to be nocturnal, which isn’t practical, not to mention impossible if your job does not allow it.

I suppose I’d figure out a way and learn to cope, but still. There is heat, and there is Evansville heat. This got me to wondering how people in the midwest or deep south who have MS cope with the oppressively hot summers.

If you are out there reading this, I’d love to know.

 

 

 

 

Drugs

Pills macro
I was a compliant kid growing up. Eager to please and never wanting to incur the wrath and disappointment of my parents, I toed the line through my high school years in terms of alcohol and recreational drugs. Part of this was because I went to a private school and lost connection with my local peers, and part of it was because I was living at home. While I was a pretty good actor, I knew I wouldn’t be able to hide the fact I might be stoned or drunk, and it wasn’t worth dealing with the fallout.

That all changed once I went to college though, and I was free from supervision and judgement. I never went crazy, and always steered away from the hallucinogenics or anything I considered hard-core because they scared me, but did dabble with pretty much everything else, primarily out of curiosity to see what they felt like.  None really stuck besides MJ for a variety of reasons, but even that died a slow death once my career started in earnest. My “drug use” resurfaced almost thirty years later in 2010 when I started getting IV meds for my MS.

I had no idea or concern about how these meds would make me feel, partly because I trusted my doctor and partly because I have always been curious about how pharmaceuticals impact one’s body. It didn’t take long however for me to realize that what I dabbled with in my twenties were minor league compared to the kinds of meds dispensed at hospitals or pharmacies.

First there was the steroids. My maiden experience with these were over a three day period at home when a visiting nurse came to the house to hook me up and explain what to do over the next few days.

The initial impact was immediate and somewhat miraculous. Compared to where I am today, the leg at that time was a lot more functional, and probably eighty percent stronger. I didn’t have any major balance issues, but I could not walk without a limp, my foot dragged and I could not run or jog. Within twenty four hours of the day one infusion, I noticed an immediate improvement, and after day three I was walking normally. No limp, no dragging foot, and I could jog easily. It was as if the MS magically disappeared. I was astounded! Unfortunately, this respite lasted about ten days before the symptoms started coming back.

Be that as it may, within twenty-four hours of the last infusion, the side effects came. I was flushed and felt warm, and my face looked like I had been in the sun all day. Plus I was ravenous, and no amount of food I stuffed down my throat would satisfy the craving. I was uncomfortably bloated and felt like beached whale. I woke up the next day greeted by a case of  chronic hiccups that lasted for three entire days, and I literally mean morning noon and night. I would occasionally get a respite of twenty minutes or so, but that was it. Sleep was next to impossible. It was once of the worst experiences of my life.

I’ve never done the three day course of treatment since, even though I have always had that option, because of that one experience. I continue to get a smaller dose of steroids every time I have the plasma transfer, but the hiccups that result are confined to one day and they are episodic, so I can deal with that. If they get really bad, and they usually do at night the day after the treatment, a healthy dose of the medical MJ stops them in their tracks.

Then there were the chemo meds. Every month without fail for about seven or eight years, I received an infusion of 600mg of Cytoxan. I jokingly called them “flu shots” but was warned that this was no flu shot, and I would be wise to take a day or two off after the infusion to rest.

I received the infusions on Friday. I would feel like I was coming down with the flu by Friday night, and I was absolutely useless on Saturday and Sunday. I believe one for the first posts I wrote, entitled Zombie Land, described its effects in addition to all the other treatments and procedures I had put myself through up until then, so I won’t rehash history.

But I had no energy whatsoever. I couldn’t even lift my head off the pillow, and walking to the bathroom felt like walking though a vat of liquid caramel. Speaking took a monumental effort as did anything else remotely physical. And the dreams! They were intense, and while the sex dreams were fun, many of the others were bizarre bordering on hallucinogenic.

I vividly remember having a dream where I was in my bedroom, feeling tired, sweaty and aware. The room would start spinning for a minute or two, then stopped. Once that occurred, I could feel my body levitate off the bed. I couldn’t open my eyes because I didn’t have the energy, but there was no doubt I was hanging in mid air, floating as if I were on a cloud. I hovered that way for a few minutes before I felt myself being lowered and coming into contact with the mattress and pillows.

This “dream” happened every single Sunday morning of my infusion weekends for years, before becoming a once in a while thing. It felt so real because of the awareness I had when I was in the middle of it. I could feel the bedsheets draping over my body, cascading downward like a loose shroud. I heard the same household sounds that I would if I were awake. Everything I felt seemed like it was actually occurring. To this day I don’t know if this was a dream or a hallucination, but it was one of the most bizarre experiences of my life.

And this was after getting only 600mg of the stuff. Cancer patients get hell of a lot more, so I can’t even begin to fathom what that must feel like.

After being on the Cytoxan for a while, Saturdays became manageable while Sundays remained a waste of a day. But it still killed one weekend a month, which is primarily why I switched to Ocrevus. It reduced the number of times I’d be infused each year from twelve to two. I don’t get the weird dreams or crushing fatigue like I did with the Cytoxan, and I have a little more energy, but my body still gets hot, my head still feels like mush, and if I overdo it the room starts spinning and into bed I go. It also takes about a day or two longer before the side effects are completely gone.

The curious thing about switching to Ocrevus is the difference in how I feel after receiving the plasma transfers. Perhaps that is because I used to get the plasma transfers and the Cytoxan on the same day every month, and I what I felt was mostly because of the meds. Without those meds, I feel  physically wrung out and mentally fuzzy later that evening. By morning I may feel a little burnt-out, but that fades quickly.

These meds are designed to address physical issues, but there is a host of drugs for mental health issues that focus on brain chemistry. Knowing what my head and body feels like with some of the meds I have mentioned, my heart goes out to anyone who struggles with their mental health and needs psychotropic drugs to survive daily life. I can’t fathom what they must endure, and hope I never learn.

While I am certainly no expert, if you are faced with a chronic illness that requires pharmaceutical intervention, and the only experience you have with drugs are of the recreational variety, understand that the difference between what you know and what are about to receive, particularly if it is done intravenously, is like the difference between night and day. And if you don’t have that experience to fall back on, be prepared for a potentially wild ride.

Make sure you ask your physician what some of the side effects might be, and how you can expect to feel. I personally don’t recommend reading the literature that comes with the meds because it will scare the shit out of you. All it does is tell you all the bad things that could occur, including death.  Who needs that anxiety?  Besides, could and will are two different things, and your MD should be able to explain what the norms are. You need to get the low-down from them, and should find another provider if they won’t or can’t provide the information you need to feel comfortable.

It is better to learn that way than experiencing it without any prior knowledge, and wondering if something dangerous is going on in your body.

You can’t heal if you’re stressing out.

 

 

 

 

 

 

 

The Longest Day

smilow

After three months of procrastinating, I finally I had my Ocrevus infusion today, and I am glad to have made the decision to go forward with it. Having said that, I forgot what a looonnnnnnnggggggg, dreary, boring, day this is.

The day starts with me leaving the house at 8. By 9 I’m in the unit and getting prepped for procedure number one, the plasma transfer. This usually takes about fifteen to twenty minutes, as the nurse has to get all the gear ready, scour each arm and hand to find a plump vein to plunder, insert the needles and get them secured, then start the centrifuge. I’ve been doing this for years, but I still get apprehensive when it is time for the needles. I don’t mind it if they stick me, then have to withdraw because the vein was playing hard to get, and try find another one. But what makes me cringe is when they have the needle in and haven’t found pay dirt, but think they are close. When that occurs they usually move the needle around while it is still in the arm. They are very careful, of course, but it is uncomfortable and I’ve been zinged a few times when they moved it a little too far or deep. When we are ready to rock and roll, the set-up it looks like this.

The procedure takes an hour and a half, but can go as long as two hours if there are complications with the blood flow. About a gallon of blood is filtered through the centrifuge, and the plasma is removed and replaced with six bottles of albumin, which is a blood product. The process is boring as hell because there is nothing to do but wait for it to be over.

My inclination is to fall asleep, but that isn’t possible because I have to periodically squeeze a rubber ball in the hand that is on the picture on the left. That is where the blood leaves the body to enter the centrifuge, and periodic pumping helps with the flow and makes the procedure go more quickly.

The thing is I can’t move the arm on the left because if that needle budges a millimeter the machine starts beeping and the nurse has to play with the needle until the beeping stops. And if I adjust my body too much the same thing can happen, so I have to be as still as possible. That means no book reading, perusing my I-Pad (impossible with one arm and limited movement) and morning television absolutely sucks.

I need to hydrate in the morning to help fatten the veins, but have to time it right so my bladder is empty by the time I am hooked up. Having to go pee with a needle in each arm and limited ability to use them makes that process very tedious and potentially messy. Fortunately, I got it right this morning. No urge to pee, and the nurse found a vein on the first try in each limb. This is not uncommon, but I didn’t feel so much as a pinch when they hit their target, which is rare. I can always tell how easy or difficult a time the nurse had by the amount of bruising that occurs the next couple of days. There will be none this time, but there have been others where the puncture wounds are surrounded an impressive display of red, blue and purple before turning brown, green and yellow until it disappears in about a week. 

When the transfer is done, the needle and tubing from the arm on the left is removed, the tubes are disconnected from the needle in the arm on the right, and I can finally get up to empty my bladder. Then the bag with the saline solution and Ocrevus is hung from an IV pole, tubes are run from the bag and into the port that protrudes from the needle, and the slow drip starts.

How slow? Between three and three and a half hours. But at least I can have lunch, nap, which I usually do (but not for the entire afternoon), and can read the paper and other sites I frequent on the I-Pad. All the while my blood pressure and other vitals are periodically taken. Still, there are periods of time within the afternoon where there is nothing to do but watch the clock tick.

By three thirty, the meds have been dispensed, all the needles are removed, and the gauze and ace bandages are affixed. But now comes the worst part: being placed on observation for an hour to make sure there are no immediate reactions. That hour is the longest of the day, and by then a unit that was bustling with patients and had every chair filled is practically empty, as you can see from the picture that leads this post.

My ability to leave got a little complicated today when my final temperature read 100.5 and a few folks became alarmed. But then the thermometer was placed under my armpit instead of under my tongue. That temperature was normal, and I was allowed to leave at around 4:45. I didn’t get home until 5:30.

I literally opened and closed the place, which is typical. If you start from the time I left home to the time I returned, it took nine and a half hours out of my day. Thankfully I only have to do this twice a year. I can’t imagine what it must be like for dialysis patients who have to go through something similar three or four times a week. I think I’d lose my mind.

I’m glad it’s over, and I don’t have to think about it again until late December. Now all I have to do is get through these next two days when the med’s side effects kick in. It’s later in the evening and I’m already starting to feel the warmth and fatigue.

I have a feeling the side effects are going to be worse than what I remember because it has been over nine months since my last infusion instead of the normal six. The doc on staff agreed with that assessment, explaining that the extra three months allowed more B cells to replenish. This means more will die off once the Ocrevus does its thing, which will lead to more pronounced symptoms like crushing fatigue and disorientation. My neurologist said I will be most vulnerable to the COVID virus over the next eight weeks. That’s a long time to be reclusive, and pretty much kills my summer.

The things we do to try to stay healthy.