Back In The Treatment Saddle

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With few exceptions, I have received plasma transfers and infusions of various drugs every month since 2008. From time to time, and especially within the last year,  I’ve wondered if I really benefited from these treatments, and pondered the possibility that I have been wasting my time. You’d think I would have learned by now because history has proven that when I have stopped or suspended certain therapies, the symptoms get worse.

I was due for my semi-annual Ocrevus infusion in March, but this was the time when COVID 19 was on the verge of introducing itself to our state, and I didn’t think it was a good idea to take immunosuppressant drugs. So I received the plasma transfer and steroid infusion that month, but deferred the Ocrevus until I spoke with my neurologist.

The gist of that conversation was my logic was sound, and that it might be best to defer any future treatments as long as my symptoms were stable, giving us time to learn more about the virus and what was about to happen in our state.

April rolled around. I was feeling fine, and I planned to skip everything for another two months, but then decided to keep a May appointment I had on the books for the plasma transfer and steroids infusion, just in case.  It’s a good thing I did.

Halfway into April, the bad leg started to feel weaker, and I began to question the treatment moratorium. Then the falls started.

I don’t fall very often, maybe once or twice a year, and almost always when I am careless and not paying attention to something. That has always been a good barometer for how I am doing. During a three week span from mid April into May, I fell four times, and it wasn’t due to carelessness. My leg felt like it was turning into jelly, and walking around the house was more difficult, especially in the evening, as I was grabbing onto and leaning against anything within reach to get from point A to point B. Needless to say, this abstinence wasn’t working, so last Thursday I bit the bullet and headed back to the hospital to resume treatments, desperately hoping that I didn’t wait too long and that what I was experiencing was my new normal.

I was also wondering how different the experience would be compared to the pre-COVID days.

The drive to the hospital wasn’t all that different in terms of the traffic. It wasn’t super busy, but it wasn’t like driving through a ghost town either. I’m not sure what I expected, but what I saw was fairly normal for that time of the day.

Then I arrived at the parking garage. The floor I park on has somewhere between 150 and 250 parking spots, and the handicapped spaces, which are limited, are always full regardless of how early or late I arrive. Not only were those spots readily available, but I counted a total of 10 cars parked on the entire floor (when I left it was down to 6). I knew from my work that volume was down significantly, but looking at numbers on a spreadsheet is one thing. Actually seeing what that means has more impact, and I was honestly shocked at how empty the garage was.

The first order of business when I walked into the building was to make sure I was wearing a mask (the hospital provides them to those who don’t) and confirmed that I had an appointment (no visitors are allowed). Normally I head directly to the elevator and go upstairs to the treatment area. Instead, my temperature was taken, and I was asked a bunch of questions regarding where I have been and who I had been in contact with before I could proceed. The experience walking from where I started to the treatment area was similar to that of that parking garage: there weren’t many people around.  

The treatment area was on a different floor, having moved one floor down. The top two floors were exclusively dedicated for COVID patients, and the floor below those was being used as an ICU for these patients. The floor my treatments were usually on was left open for potential overflow.

The new treatment location was much smaller and felt claustrophobic. I was the only patient there when I arrived, and although one other patient did arrive after me, we could not see one another. In the pre-COVID days, the main treatment area was packed.

I had to keep my mask on the entire time I was at the hospital, and everybody who worked or was being treated at the hospital wore them too. I also learned a new term. When I temporarily removed my mask to drink some water after having it on for an hour and a half, the influx of fresh air was cool and refreshing. I made a comment about it, and my nurse congratulated me for experiencing my first “airgasm.”

The roads were empty during the drive home, which was a little eerie. I had left during what would normally be considered rush-hour, but the cars on the highway and the state routes were few and far in between. There were less vehicles on the road than you’d experience if you ventured out early on a Saturday or Sunday morning. The ghost-town type experience I wondered about had certainly come to fruition. I didn’t see many cars. In fact, I didn’t see much life at all.

The actual treatment experience was the same, which I expected. Finding veins was a piece of cake, presumably because I had gone more than two months without a needle stick. Later on in the evening it felt like I had more steel in my leg, and a week has gone by without any change. So I am cautiously optimistic that I dodged a bullet on the progression front. 

After speaking with my neurologist on Monday and talking about how I was doing, we decided to continue getting monthly plasma transfers and steroid infusions, but the Ocrevus will be deferred indefinitely. It has been nine months since my last dose of the drug, and I had assumed that my B cell level would be back in the low average range by now. I was shocked to learn that was not the case. The low end of average, by whatever units they measure it, is 4. My level was 0.9, so I’m not even close to normal. 

This development has changed my point of view regarding a number of items. I’ve been careful about social distancing, wearing masks and gloves when I am out, and things of that nature. But I have also been stubborn about continuing to do normal things, like shopping for groceries. So we’ll be having most of our shopping done by the online services that provide them for the indefinite future.

Then there is the whole returning to work thing. I miss the office and the people I work with, and presumed I would be returning once the state and the health system started to relax its restrictions. Now that I know my body’s ability to fight off infections is significantly compromised, I can see myself working from home much longer than I ever anticipated or wanted. That will be a different discussion for a different day, but I can’t see placing myself among crowds of people, even with a mask, until a vaccine is developed. Why take that chance?

I’m not afraid, will not become a hermit, and will venture out when necessary, but the definition of necessary has certainly changed. I guess we’ll see how it goes.

As a post-script to this narrative, I must say that the commute to and from the hospital, my employer of the last twelve years, opened my eyes. It was a wonderful experience, one that afterwards felt like I had temporarily busted out of jail. I had forgotten what it was like to feel free.

The commute was liberating. It was great to feel normal again, and to revisit the world beyond my self-imposed three mile radius. We take these mundane experiences for granted until they aren’t mundane anymore, and I didn’t realize the impact of what that really felt like until I was able to spread my wings a little.

I yearn for the day that kind of life can resume.

 

Dear Diary

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Dear Diary

So here it is, my 62nd birthday. It took forever to get here as the long, scary, AWFUL year that was 2020 trudged along at a snails pace. Unfortunately 2021 didn’t start out as any bargain either.

The new year wasn’t the cause for celebration I once hoped it would be. The virus was still thriving because people got impatient, the Feds didn’t listen to the science, and we reopened too soon. Long story short, over 500,000 people in this country are dead and the numbers have only recently started to plateau. At least we have finally started to come together as a nation, but what a torturous path it was to get here.

I was a kid in 1968 and had no understanding of how torn apart this country really was. It wasn’t until I watched some of the historical retrospectives on that year that I fully understood and appreciated the turmoil and divide that plagued us. I was happy not to have been an adult during that time because I would have been freaking out, fearing for our future, and gave thanks that I would never have to live through anything like that. Of course, the second half of 2020 made 1968 look like a walk in the park.

When roughly half the states ignored the scientists pleas and reopened in June, the results were actually pretty good for a short while. The naysayers and those who embraced the fake news mantra puffed their chests out and screamed “I told you so.” Trump’s popularity skyrocketed, and the economy started showing signs of coming back.

Then the second surge hit. It ravaged Middle America and the rural population areas before spreading outward to both coasts. Even though a good chunk of Trump’s  cabinet got sick, the President typically insisted it was all a hoax designed to make him look bad. When the Northeast, the Mid Atlantic and the West coast continued to resist opening, and were joined by some of the states who realized the terrible mistake they had made, his “followers” took things into their own hands, and the violence that erupted far surpassed that of 1968.

When the second surge exploded, the scientist’s fears came to fruition: hospitals got overrun and could not meet the demand, in part because our testing capability was worse than when the initial surge hit, and because the second surge took out a lot of our front line healthcare workers as the PPE shortage forced clinicians have to wear what they had longer than they did the first time around.  Meanwhile, our food supply chain collapsed, and unemployment got as high as 40%. Only recently has it started to decline. It has dropped to 34% and continues to decrease.

When Trump and the Republicans got crushed in November, he claimed the results fraudulent, which wasn’t a surprise since he started beating that drum during the summer, saying he was afraid of massive voter fraud designed to remove him from office. Insisting he was cheated, he refused to accept the results, the followers hit the streets and the second wave of violence hit. Thank God the Supreme Court ruled against him, but he still didn’t change his tune until he, Pence and President-Elect Biden got the virus.  We really didn’t start coming together as a nation, however, until Biden died shortly before the inauguration (Trump and Pence survived, barely). Thankfully Biden’s passing did not occur until after the electoral college formally cast its votes, and the results became official and irrevocable. Who knows what might have happened otherwise. The country has rallied around the Harris/Warren administration, and I think we are finally starting to heal.

As for me, we still haven’t sold the house, and can’t even rent it. If this goes on for another three months I am going to have to dip into the retirement funds, but at this point I could really give a shit. I’ve lost close to a dozen friends, colleagues and relatives to the disease, so the fact that Nidan, K and I have survived is all that counts. The fact that I am among the lucky 66% still working is a blessing too. Things could be infinitely worse.

You know diary, I always thought I was lucky to be born when I was. I mean, I got to experience The Beatles, saw man walk on the moon, witnessed the Red Sox win not only one World Series but four, saw the turn of the new century and so many technological advances it makes your head spin. But never in my life did I ever expect to witness what I have these past nine months, when the dark side of human nature was unleashed. I even bought a gun when the looting got really bad, for goodness sakes. Never in my wildest dreams did I think that would ever happen.

At least the population got so pissed and disgusted that there finally seems to be enough momentum to pass Congressional term limits. Cover themselves in glory they did not, and the electorate seem firm in their conviction that any house rep or senator who votes against it will serve for only one term.  It’s a pity it took something so catastrophic to make this happen.

I am cautiously optimistic the page has been turned, and am looking forward to being able to go where I please without fear, not to mention being able to watch professional sports some time in the near future. I don’t know what VE or VJ days were like at the end of World War Two, but I can’t imagine a bigger celebration than the one that will occur when the vaccine that has finally been developed is rolled out in a few days. 

So enough of the maudlin shit, diary! Life as we knew it appears to be finally returning, so a huge HORRAY is in order, and it is time to turn the page.  Having said that, it’s silly to assume life will be the same as it was before the pandemic hit. How could it after all the death, carnage and animosity? We have all been touched by this in some fashion, and are forever changed as a result. Only time will tell if it is for the better or the worse.

 

The Greatest Generation is Rolling In Their Graves

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Allow me to vent.

“The Greatest Generation” was the moniker coined for those folks who grew up during the depression, endured The Dust Bowl and also endured World War Two, either as soldiers or citizens supporting them on the home front. These resilient people endured hardships and deprivations none of us can imagine. I can guess what they might think if they were here to witness what is occurring today among those who are demonstrably chafing against the states closing down and some of the rules they implemented regarding social distancing and facemasks.

I’m all for people having their own thoughts and opinions about anything. Everyone is entitled to their own belief system regarding what the government should or shouldn’t do that encroaches on our lives.

Having said that, I am nauseated by some of the stories I’ve read about citizens taking things into their own hands to protest what the states have done in an effort to protect its citizens as a whole.

Shooting people? Killing people? Resorting to violence? Literally getting in citizens’ and law enforcement personnel faces and sometimes spitting in in them? Opening and licking ice cream containers in grocery stores? When did this kind of stuff ever become acceptable?

Then there is the stupid stuff, like some guy from Long Island suing the University of Connecticut because their child isn’t getting the benefit of the full college experience. Really? Like it’s UCONN’s fault.

We’ve been at this for less than two months. Can you imagine if these people had to live through the dust bowl, or had to endure rationing for almost four years to support a war effort? They’d lose their minds. Forget riots. Armageddon would be more like it.

I know, I know. It was a different time. Attitudes were different and so were how we were raised as children. But still, when has it become okay for anyone to express an opinion in such a way that it endangers the lives of others? When did this sense of entitlement take hold?

Like I said, anyone can have their views about the pandemic, and what the states are doing.  But how about taking some responsibility and having accountability for your actions? These folks take none. Their attitudes are similar to those of the White House, who by not taking any leadership role is in a position where they can avoid responsibility for whatever happens (unless it is good, of course), leaving it up to each and every governor to decide what is best for their state. That way they can be blamed when things go tits up by reopening too soon. If the economy tanks there is little chance the incumbent gets re-elected, so the welfare of people be dammed. Let’s get the economy rolling again. Talk about having one’s priorities in order. Don’t they pay attention to the science?

Yes, these infringements on our lives suck. I’m getting impatient like everyone else. I hate being cooped up at home, and hate having to wear a mask and gloves when I venture out. I hate the shortages and the fact that so many people are struggling. But I believe in the science and believe it is all for the common good. And I would rather be inconvenienced than sick or dead, or have those I love in that position.

To say these developments are worrisome and discouraging are an understatement. I fear that throwing caution to the wind and reopening before more testing is available and all the trends are pointing in the right direction is a recipe for disaster. There are over 3,000 new cases a day of citizens testing positive for the virus in this country, for goodness sake. It is starting to hit rural America too. What will happen to this figure, in addition to fatalities by reopening prematurely? It will certainly increase, but by how much. Double? Triple? Will hospitals become so overrun that they won’t care for people above a certain age or present certain symptoms? Will the spread of the disease impact nurses and doctors so much there aren’t enough of them to handle the incoming surge? These are all fair and legitimate questions, ones I fear have more truth than not.

I’d rather be cautious and err on the side of opening up too late than too early. The consequences are too dear.

So what do we call this generation or group of people suing everyone and engaging in or inciting violence? The Whiners? The Whiniest Generation? The Its About Me Generation? The I don’t Give A Shit About Anyone Else Generation?

It’s sad, and I’m afraid it is going to get a lot worse before it gets better.