My Second Round of Ocrevus

Today I spent seven and a half hours at the cancer infusion center. That’s how long the entire Ocrevus infusion took, including an hour for pre-meds and an hour afterward for observation. If I were to apply Lean Manufacturing Principles (an engineering thing) to this process, I think we could have done it in about 90 minutes.

Ocrevus is the new, and only MS drug approved for primary progressive multiple sclerosis. It seems to work best on people earlier in the disease and younger than me, but I’m giving it a try nonetheless. I thought I would share with you the basic setup I had for the day. 

A: The reason was there — about $30,000 worth of Ocrevus, one of two infusions per year that I receive.

B: IV pump which delivered the Ocrevus.

C: Perfectly sized pillow from home

D: The spot on the back of my hand where the Ocrevus entered my veins. The first nurse, when she tried to find a vein, gave up without even poking me once. The charge nurse failed on her first try but succeeded on her second. Better than average.

E: Hospital issue pillow for me to rest my left arm on.

H: Plastic urinal for me to pee into. Same as I use at home.

I: Tablet. Not sure why I brought it since there’s no Internet there.

J: Water which I didn’t touch because I had so many fluids going into me anyway.

K: Equally useless mouse for the tablet.

L: Clunky TV remote for tiny hospital TV.

M: Smart phone which waffled between zero and one bar of reception — my only link to the outside world for seven and a half hours.

N: I can’t forget my trustee Permobil wheelchair, which kept me comfortably reclined for the duration.

Missing from the photo are the people who took such great care of me: a team of nurses and technicians and of course my lovely wife.

Overall, it’s not a horrible experience. The cancer patients got in and out more quickly than I did, but I won’t go home with terrible side effects like they do. I won’t be able to tell if this treatment is helping for about another six months or so. You people will be the first to know. That’s a lie. I will let you know… let's say… promptly.  Definitely promptly.

Thoughts on Coping

   

I can no longer type, and I can’t hold a book. I am unable to raise my arm high enough to wave at a friend. I am incapable of getting into bed by myself. I can’t eat, dress, or bathe without assistance. I need help to blow my nose. There are far too many itches I can’t scratch. The insult “he couldn’t hurt a fly” applies literally to me. I can’t walk, stand up, or even crawl. I can’t get up when I fall.
     These are just a few examples. I could give you so many more. And yet I would hesitate to trade my life for anyone else’s. Here’s why.

     I’m rarely wet, cold, thirsty, or hungry. I’m not afraid, intimidated, or abused. I enjoy broad liberties and freedom of expression. I do not suffer from clinical depression.

     I can still see, hear, and speak. I can swallow food and breathe on my own. I’m not in constant pain. I can operate a computer using a mouse and voice recognition software. I’m able to sit up in either of my two wheelchairs.

     I have a diversity of interests which occupy me all day long. I own a handicapped van and an accessible house. I have a strong support system, led by my incredible wife. I am loved and appreciated and well taken care of.

     These are just a few examples. I could give you so many more.  I know of several readers whose list of items to be thankful for is not as robust as mine. But I know of no one whose list should be empty.

     I must be careful. My message isn’t that if I can do it, then so can you. The last thing I want to do is be insensitive to people who are unable to cope as well as me.
     For example, I once received an email from a reader who wondered why she couldn’t be as content as I am even though her MS disability was less severe than mine. She felt sad about having MS, and she also felt guilty about not handling it in a more positive manner — a double whammy. She held me in unduly high regard for the apparent bravery I displayed in coping with my disability.
     My ability to see the positive in an otherwise difficult situation is due more to my genetic makeup and the skills I learned from my quadriplegic mother than personal courage or intestinal fortitude. I should be envied more than admired. Individuals who struggle with adversity and are unable to find the silver linings are not inferior or weaker people. It’s just that this particular skill doesn’t come to them naturally, and they must find it if they can.

     It’s not only people with chronic, disabling diseases who struggle to find contentment in this sometimes cruel world. Anyone at any time might experience depression or despair. Sometimes, if you’re lucky, relief can be found simply by pursuing a fresh perspective. But please know that help is available. There’s a wealth of resources on the Internet, and medical professionals and counselors have high success rates for treating depression.

     In closing, consider this quote from Helen Keller, who was uniquely qualified to address contentment: 

“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”

Clarifying note: I must acknowledge those folks, like my late friend George, who made the conscious decision to stop fighting. I support an individual’s right to choose such a route, particularly under extreme circumstances. 

2018 Cruise Post #4 — Ports of Call

On this 8-night cruise, we made only three ports of call, given that we spent two and a half days traveling from New Jersey to warm weather and back.

Port Canaveral

We left Bayonne, New Jersey on a cool Saturday afternoon. By Sunday, it was warm enough to walk on the deck but not to linger there. By Monday, throngs of sun worshipers basked in the 70° temperatures. On Tuesday morning, we found ourselves docked in Cape Canaveral, Florida.

Port Canaveral, as they call the cruise terminal there, is a major port for cruise ship departures, situated only 45 minutes east of the Orlando airport. But, as far as being a destination port of call, it has little to offer. Sure, you can tour Kennedy Space Center, but Kim and I had already done that. You can take a shuttle into Orlando and do the theme parks, but again, been there, done that. Still, we came up with something fun to do.

Kim’s parents spend their summers in Maine and winters in Clearwater, Florida, a two-and-a-half-hour drive from Cape Canaveral. They made the trip on this Tuesday, along with Kim’s Aunt Annabelle and cousin Ann, who were visiting Kim’s parents. We enjoyed a long lunch at a restaurant along the water within walking distance of our ship. This would be the only time we would see Kim’s parents between October and May.

Nassau, The Bahamas

Nassau is more of a traditional port of call. There are lots of local excursions and a busy downtown area within walking distance of the ship. Unfortunately for us, we were one of five major cruise ships to dock in Nassau that day. There must’ve been 16,000 passengers squeezing into the shops, restaurants, and other attractions of Nassau. Somehow, Kim and I found our way to a brewpub that wasn’t too crowded. We downed a couple of beers, walked around the block and decided that our beautiful ship would be a better place to spend the day. On the walk back, we took pictures of this private yacht. Turns out that it’s owned by a Russian oligarch, Leonid Mikhelson, and is valued at approximately $150 million.

Anthem of the Seas stayed in port until midnight, because we had only a short jaunt to Royal Caribbean’s private island the next day.

Coco Cay

A year earlier, we had visited this island with my brothers and their wives, and we had a great time. The biggest drawback is that Coco Cay has no pier. The only way to shuttle 4800 or so passengers to the island was on small, tender boats. We had no interest in that circus. This was the day that Kim rode up on the Northstar, and we enjoyed the relatively empty ship for hours. Royal Caribbean is building a peer at Coco Cay, so maybe someday in the future we will visit again.

Cape Liberty, Bayonne, New Jersey

We enjoyed the last two and a half days of the cruise as we returned to whence we began. When we disembarked the ship on Sunday morning, we were greeted by cold, hard rain as we packed up the minivan with all of our equipment. By late afternoon we were back at home. Kim joked that she needed to end the vacation so that she could get some rest and relaxation. That’s the sign of a vacation well spent.

I realize how fortunate I am to be able to go on vacations like these. Many people at my level of disability don't have this opportunity. It takes financial resources, an adventurous spirit, and a supportive partner. I'm lucky enough to have all three.