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. 

 

 

Wheezing Towards the Finish Line

Wheezing

The finish line is close. I can see it clearly, as it is almost within our grasp. All that is left to do is install the floors, finish the trim around the doors and floors, install the appliances, hook everything up to the plumbing and electrical systems, finish painting, plant the grass, and lay the blacktop for the driveways. It sounds like a lot, but in the scheme of things this is short par putt. At least I’d like to think so.

I should be giddy, but the truth is I’m exhausted, more mentally than physically. In fact, I almost nodded off on the way home from work yesterday waiting for a long stop light.

I can’t speak for K, but I’d bet she’d tell you she is feeling the same way.

I am tired of being in limbo, with a foot in both places. Not only are we preparing the final touches on the new place, our current one is in compete disarray. The garage is half full with packed moving boxes and other items, and our living room has an assortment of boxes in various stages of being packed laying about. There is still cleaning and painting to do. The pace is relentless, and not feeling settled is, well, unsettling. I know the end is near, as I believe a late September/early October move is imminent, and that is part of the quandary. There is still so much to do in such a short period of time. It often feels overwhelming.

Each day is a blur. Wake up when it’s dark, go to work, come home and figure out what to eat (planning and preparing meals is more the exception than the rule), then head to the site and perform a myriad of little tasks to make things easier for the workmen and prevent unnecessary delays. One or both of us stay there until dark, then we come home, clean up, collapse for a few hours, drag ourselves to bed, and do it all over again the next day. By day’s end my mind is mush and my body is spent. I move around like a Walking Dead zombie. K’s body is sore from head to toe.

This weekend’s priority is to get everything off the floors of the new place, and trust me when I tell you there is a lot of big and little shit strewn about, much of which needs to be removed by tradesman, and get the floors cleaned, vacuumed, and otherwise prepared for the wood floors that will be put down next week.

It has literally become a seven day a week, eighteen hour a day gig, and has been this way for about a month now. You’d think the pounds would be melting from all the activity and the reduction in food intake, but you’d be wrong, so I don’t even have that perk to feel good about. The grind is relentless and tedious.

We are at the end of a what has been a grueling marathon, which is ending on an upward slope. The slope feels steep, but we need to muster a strong finishing kick. The task seems Herculean, but I know it will happen. What choice is there?

I know it will all be worth it. I know we will love the comforts and amenities of the new place, and I know that some day in the not so distant future we will look back at this with a nostalgic fondness. I also know this will all be over soon.

But it can’t happen soon enough.

 

 

 

Taking A Break

break

The one thing I committed myself to when I started this blog was to post something every week. Every once in a while I would become inspired and post two or three times, but that was the exception. Friday was posting day, then come Wednesday or Thursday an idea would pop into my noggin or I’d consult the list of topics I keep for a rainy day. When that occurred I would start writing and editing, then post it whenever Friday rolled around. That has been the routine since the summer of 2017, and the stats tell me it has repeated itself 114 times.

That number is staggering to me, primarily because I didn’t think I had that much to say, or that anyone would be interested in reading anything I wrote. I was pleasantly surprised to learn otherwise, and an organic momentum developed where it felt like a part of me was missing if I didn’t tickle the keyboard at least once a week.

That streak may soon end.

I am giving myself permission to take a break this summer and abandon the weekly deadline, primarily because I am up to my eyeballs in work, both on the job and at home. Since I am a little obsessive-compulsive when it comes to sending something into the blogosphere, it typically takes a few hours a week for me to start, edit, then re-edit something before I am done. That amount of time has become in short supply lately, which has caused me to fall woefully behind reading and commenting on the blogs I follow.

The well is also running a little dry. I have one item left on my list of things to write about, but I’m not motivated to share it right now. Trying to come up with another topic that gets my juices flowing is fruitless because it feels like a lot of work, and would be like trying to force a square peg into a round hole.

The truth is I am tired and worn down. Between the job, the work surrounding the new house, and my writing, fatigue has set in, more mental than physical. I don’t think it’s the MS, although I have been prone to bouts of it on occasion, which is par for the course with this disease. Regardless, I can’t let this become the norm or I will be as useful as tits on a bull when I need to be at my energetic best when moving day approaches.

This is not goodbye. Far from it. I suspect I’ll go to an every other week schedule, although I could go longer between posts. It all depends on what I have to say and if I have the time and desire to share it. I’m not a fan of  re-blogging, but may resort to that rather than going a month without writing anything. Who knows, maybe I will use some of this time to begin the new novel.

All week long I have wondered if this lethargy is a temporary rut, and I’ll will wind up getting my second wind and post something next week and the week after that, etc. That has happened a number of times before. Perhaps it will, and I’ll feel silly about this meandering, whining dissertation. But I think not.

Guess we’ll find out together.