Intrathecal Methotrexate: One Year of Treatment

Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing. – Denis Waitley

On Monday I had my seventh intrathecal methotrexate treatment. It’s been an interesting year.

I remember a difficult spinal tap in 2005, after having had several routine spinal taps in the years before. I swore at that time that I would never submit to another one. It’s funny how things change. My current, every eight week or so, spinal taps are sometimes routine and sometimes challenging, but I welcome them, because they seem to be making a difference in my life.

My first intrathecal methotrexate infusion was on March 5, 2012. It didn’t go particularly well. The oncologist made several stabs before hitting the spot. My second infusion was the worst. Yet again, it took him several tries, but that was not the issue. I was essentially immobile for nine days afterward because of a post-lumbar puncture headache. You can read about the details here. For the third infusion I was able to convince the doctor to use a smaller, 25gauge needle, which is known to reduce the likelihood of a post-lumbar puncture headache. He didn’t like the idea because 25gauge needles are so flexible that it is difficult to properly direct them, but he agreed to give it a try. It took him two attempts to hit the spot, which was no worse and maybe a little better than he had done with the larger needle. Most importantly – there was no headache, and there hasn’t been one since we began using the finer needle.

The fourth infusion went fairly well. By the fifth infusion, he seemed to be really getting the hang of it. Using the thinner needle, he hit the spot on the first try. I had virtually no discomfort during the procedure. We were falling into a comfortable routine, or so it seemed.

Each time a doctor misses during a lumbar puncture I feel a somewhat uncomfortable sensation in my spine. It is not pure pain. It’s pain…plus something weird. The inner sanctum that is my central nervous system is being touched. Yes, the doctor does use local anesthesia, but that only helps at the skin. The successful tries, those where the needle properly pierces the dural lining of the spinal cord, are no more painful than a flu shot. But when the doctor misses, then I exhibit certain involuntary responses. Usually I contort my face into a grimace. In the worst case, being the wimp I am, I articulate my discomfort with one of several audible declarations which I have at my disposal.

The sixth infusion brought just such trouble. The oncologist simply couldn’t hit the spot. He repeatedly inserted the needle to no avail. But after about 30 minutes his dart finally landed on the bull’s-eye. A round of drinks for everyone! We were all emotionally exhausted - me obviously, but also my wife, the nurses, and the doctor. He was apologetic, and even gave Kim a hug, and by no means is he the touchy-feely sort. But I had no post-lumbar puncture headache, and I was generally no worse off for the ordeal.

As I readied for my seventh treatment on Monday of this week I didn’t know whether to consider the sixth treatment to be an anomaly or a trend. I wasn't overly apprehensive though. Here’s the good news – this injection was his best ever, and he is beginning to gain confidence as he continues to learn the anatomy of my apparently tightly packed spine.

I have the utmost respect and gratitude for my oncologist. He agreed to take me on as a patient knowing relatively little about MS and how this chemotherapy drug might help me. He has consulted regularly with my neurologist. I provided the oncologist with a lot of information about the use of intrathecal methotrexate for MS, and he has read through it with humility and an open mind. He treats me with respect and compassion, and is willing to continue this venture despite the occasional bump in the road. I am very fortunate to have him on my medical team.

So my first year of treatment ended on a good note regarding the procedure itself. More importantly, I continue to feel that intrathecal methotrexate may be having a positive impact on my disease progression. I’ve still felt no clear worsening of my MS in over a year, and that is a huge deal.

I won’t be shouting from the rooftops that intrathecal methotrexate is the newest, greatest treatment for all people with MS. I am here, however, to say that there may be something to this idea, and people with the progressive form of the disease who are having no luck with any other approaches may want to give intrathecal methotrexate a serious look.

Feel free to contact me at email@enjoyingtheride.com if you would like to discuss this further.


Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.

What Do I Do All Day? I Read Books

This is the third in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

As a child I was a voracious reader. I often had multiple library books checked out at the same time. At school I remember the Houghton Mifflin readers with names like Kaleidoscope, Galaxies, and Serendipity. Every Friday at school we enjoyed something called the Weekly Reader. We also had a package of short pieces called SRA Reading Lab. Students would read a story printed on a fold-out card and then answer questions about it. As we progressed through the cards, we reached different color-coded achievement levels. Between my love of reading and my competitive spirit, I was always way ahead of the class in SRA.

I absolutely lived for the periodic Scholastic book orders. Deciding among all the interesting choices for books was one level of fun, but nothing matched the thrill of seeing the teacher open up a large cardboard box and distribute everyone’s books when they arrived weeks later. I smelled them. I ran my fingers over the glossy covers. I lost myself in their pages.

But then I grew up, and I no longer made as much time for reading. Oh, I’ve always had book in progress, but during my 20s and 30s it would often take me forever to finish one. I was too caught up in my life to slow down and smell the ink, as it were.

My young-adult equivalent of the Scholastic book orders was the Book-of-the-Month Club. Until the first Borders store was built near me, soon to be followed by the invention of Amazon.com, the BOMC was my primary method for getting a reading fix. I was surprised to find that they still exist today.

But since I went on disability retirement four years ago, I’ve been able to reignite my passion for reading.

As I mentioned in an earlier post, about two years ago I stopped reading books made from trees and started reading e-books, because paper books became too difficult for me to hold and turn the pages. My first e-reader was a Kindle, which I still use to this day when reading in bright sunlight. I’ve stayed with this platform. I have a Kindle reading app on my laptop, on my android cell phone, and on my iPad Mini. All of these devices sync with one another so that I never have to thumb through scroll through the pages to figure out where I left off.

So Mitch, what books are you reading these days? Okay, I’ll tell you. But remember, you asked!

I have a wide variety of interests. Here’s a sampling of what I’ve read in the last couple of years.

True Accounts of World War II

Although there has never been a period in human history with more suffering, there has probably never been a period in human history where more great stories were born. No need for fiction here:

· Unbroken: A World War II Story of Survival, Resilience, and Redemption, Laura Hillenbrand
· In the Garden of Beasts: Love, Terror, and an American Family in Hitler's Berlin, Erik Larson
· The Wild Blue : The Men and Boys Who Flew the B-24s Over Germany 1944-45, Stephen E. Ambrose
· Lost in Shangri-La: A True Story of Survival, Adventure, and the Most Incredible Rescue Mission of World War II, Mitchell Zuckoff
· Double Cross: The True Story of the D-Day Spies, Ben Macintyre
· I also read the well-known Vietnam War chronicle called Dispatches, by Michael Herr

Books about Neuroscience and Human Behavior

Since my diagnosis with a chronic neurological disorder, I’ve taken a keen interest in neuroscience, and just what makes humans so, well, human. I’ve read such books as:

· The Telltale Brain: a Neuroscientist’s Quest for What Makes Us Human, V. S. Ramachandran
· Being Wrong: Adventures in the Margin of Error, Kathryn Schulz
· Lying (Kindle Single), Sam Harris
· Free Will, Sam Harris
· Thinking, Fast and Slow, Daniel Kahneman
· The Believing Brain: From Ghosts and Gods to Politics and Conspiracies---How We Construct Beliefs and Reinforce Them as Truths, Michael Shermer
· The Power of Habit: Why We Do What We Do in Life and Business, Charles Duhigg

It is a commonly accepted notion that human morality does not fall in the purview of science. I respectfully disagree, and so does Sam Harris in his book:

· The Moral Landscape: How Science Can Determine Human Values

Novels

I try to alternate between nonfiction and fiction books. But I must admit, even the most important and enlightening nonfiction books can be a slog to get through. When I fall into a good novel, however, I consume it within a few days. Here are some examples:

· Another Roadside Attraction, Tom Robbins
· Stieg Larsson’s millennium trilogy: The Girl with the Dragon Tattoo, The Girl Who Played with Fire, and The Girl Who Kicked the Hornet’s Nest
· Stoner, John Williams
· Charles Frazier’s Nightwoods and Thirteen Moons
· John Grisham’s The Litigators, Calico Joe, and The Racketeer

Books about Humanism and Select Topics in Religion

As a secular humanist, years ago I read all the landmark atheist books by such heavyweights as Dawkins, Dennett, Harris, and Hitchens. But I also read less confrontational humanist writing such as:

· Good Without God: What a Billion Nonreligious People Do Believe, Greg Epstein

Being a nonbeliever in a religious world, I’ve probably read another 20 books of this sort over the past few years.

Still in the religion genre, I read two books by Ayaan Hirsi Ali. She is a former Somali Muslim turned atheist, who writes on behalf of women who suffer terribly in fundamentalist Muslim countries and families:

· Infidel
· Nomad: From Islam to America: A Personal Journey Through the Clash of Civilizations

I’m a bit of a feminist, so I also read a book by a former nun turned atheist who worked under Mother Teresa:

· An Unquenchable Thirst: A Memoir, Mary Johnson

I recently finished the memoir by Salman Rushdie, about his years in hiding, surviving the Ayatollah Khomeini’s fatwa:

· Joseph Anton: A Memoir

Books about Multiple Sclerosis

Not so much anymore. When I was diagnosed, and for the first few years after, I read everything I could about this mysterious disease. But there’s very little in print that gives more than a passing mention to my particular type of MS. I wrote a blog post a couple of years ago detailing all the MS/Disability books in my library, and I encourage you to visit that post if you are interested in this genre of reading. Going forward, if you find any new and interesting books on MS, please let me know.


Although I’m a huge sports fan, I rarely read books written by athletes. I find them to be filled with a little bit too much “I am living proof that you can accomplish anything if you just set your mind to it.” In fact, I wrote a blog post about that very sentiment. Nevertheless, I have in my Kindle queue right now a book called:

Francona: The Red Sox Years, Terry Francona, Dan Shaughnessy

As a lifetime Red Sox fan, I’m looking forward to that read…perhaps on a warm, sunny Jamaican beach.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog

When Does MS Begin?

A person's struggle with MS officially begins when they are diagnosed by a neurologist. But in order to receive said diagnosis, a patient must have already experienced symptoms for some period of time, often years. Therefore, each of us with MS harbors memories of early events, sometimes troubling and other times casually dismissed, which are relevant only in light of an eventual diagnosis. And for each of us, there is that single, earliest memory of something unexplained. When I recently came across this old team photo, I was reminded of what I now recognize as my first MS memory.

In the summer of 1999 my wife and I coached our daughter’s Little League softball team. We instructed the girls on the basic skills and knowledge required of the sport, but placed more emphasis on fun than on winning. This was fortunate, because our team was not blessed with an abundance of natural, athletic talent.

There were six teams in the league, and we finished the regular season in last place. In the playoffs, the best two teams were given first-round byes, so we went up against the number three-ranked team. Somehow we managed to win the game. Maybe all of our positive reinforcement had begun to pay off.

The reward for our efforts was a game against the number one, undefeated team. They had the best athletes and a serious coach who pushed them hard to win. Kim and I accepted a dinner invitation with friends for the night after this game, because we were confident that our team would be soundly beaten by this juggernaut, and our coaching commitment would be finished. But of course we didn’t share these doubts with the team. As with all our games, we simply encouraged them to play hard and have fun.

I don't know what got into our girls, but they played inspired ball. We went into the top of the final inning trailing by a 6 – 4 score, but we rose to the challenge. Every girl started hitting the ball well. We scored a run to pull within 6 - 5, and had the bases loaded with nobody out. It was thrilling. One of our best hitters was at the plate. What we lacked in talent, we made up for in enthusiasm, sometimes to a fault. Kim and my clandestine dinner plans for the next day were in jeopardy, but we didn’t mind.

In fact, the three girls on base were so excited that they forgot one of the basic tenets of the game, which we had drilled them on from the very first practice. Our batter struck the ball hard, but directly at the third base person, who caught it on a line for the first out. All three base runners, unconsciously reacting to the loud crack of the bat, just started running (actually it was more of a loud ting than a crack because we used aluminum bats). Kim and I yelled and pointed and waved our arms like crazy people, but it was too late. The third base person threw to second base for a double play, and the second base person threw on to first base for an inning-ending, game-ending, season-ending, Little-League-softball-coaching-career-ending, triple play. Ouch!

We all gathered to congratulate the winners and celebrate our wonderful season. Soon, the trauma of the triple play was behind us.

So what does this softball team have to do with my earliest MS symptom? A couple of weeks before the playoffs, we were concluding one of our team practices with a fun activity. I had a stopwatch, and I was determining who could run around the bases the fastest. After all the girls had taken their turns, they insisted that Kim and I give it a go. Kim ran the bases about a second faster than any of the girls had, which was to be expected since she was a high school track champion.

I then prepared to dazzle the team with my manly speed. Remember, this was a mere Little League softball field, not a regulation baseball field. I cruised around first base and into second base, looking like the next coming of Willie Mays. But somewhere between second and third base my legs suddenly felt like lead. It was clear to me that I wouldn't be able to finish at full speed, so I made the split-second decision to turn my run into a joke, rather than reveal my sudden infirmity (even to myself). As I rounded third-base I faked a spectacular wipeout, and we all laughed and laughed.

Sure, it seemed odd to me that I couldn't run around the bases without becoming fatigued. But lots of strange things happen in our lives, and I gave this incident no further thought. Of course it never occurred to me on that sunny and carefree day that what I was actually experiencing was the onset of a chronic, disabling disease that would profoundly alter the arc of my life.


Feeling some déjà vu? That’s because this post is based on a similar one from January of 2011. Yeah, I did that…

Lessons Learned from My Photo and Video Archiving Project

This is a follow-up to my earlier post What Do I Do All Day? I Digitize and Archive Family Photos and Videos, and is only for those people who are interested in some of the nuts and bolts issues regarding a project such as this. The rest of you can return to chewing your toenails, plucking stray chest hairs, or whatever else you do to pass the time. 

Disclaimer: I’m no expert on this subject. I’ll discuss what I learned throughout my project, but by no means am I saying that my way is the only way, the best way, or even a good way. But it is one way.

Setting up the project

There are lots of proprietary programs that you can use to manage your photo database. However, it is my humble opinion that you don’t want to be reliant on those programs. What if they fall out of favor or go out of business? With this in mind, first you need to create individual .jpg files for each and every photograph. After you’ve built that folder, you can use these other programs for organizing, presenting, or sharing. My point is, don’t be completely beholden to any particular program.

You need to think about a file naming system

It makes a lot of sense to organize your photograph files by year. Of course, depending on your situation, you may also want to organize it in other ways, for example:

Photos taken by Dad when he was married to my mother, Jane

Photos taken by Dad when he was married to that slut, Betty

But within such categories, give serious consideration to organizing by year. This means that the first four digits of your filename should represent the year. The next few digits, maybe three digits, should be used to place the individual files in the order you would like them to appear, usually chronologically within the year. If you happen to have dates on all your photos, then you can use 2 digits for month and 2 digits for day. In my case, I usually didn’t have precise dates, so I just used three-digit numbers such that early in the year I was in the 100s in late in the year I was in the 900s.

So, a typical filename might be:

1964 133.jpg

or

1972 904.jpg

Note: For the remainder of the filename discussion I am going to drop the .jpg extension, with the understanding that it applies to all files.

At this point you may or may not want to add further qualifiers to your filename to describe where the source materials can be found. In the case of my father’s slides, I added three characters for the box number (I labeled each slide box with a two digit number) and three characters for the slide number within the box. In this way, a typical filename might be:

1964 133 B06S18

or

1972 904 B18S05

These are just examples to illustrate how you can use smart file naming to cross-reference your digital files with the actual photos. There’s a good chance that the original photos will never, ever be touched again after you finish scanning them, but you just can’t be sure.

Here’s another helpful hint regarding file naming. If you have five pictures that you are scanning, don’t name them this way:

1971 250
1971 251
1971 252
1971 253
1971 254

Instead, leave some space between them in case you want to reorder the files a little bit, or you decide to add files in between these at a later time. Maybe give them the following filenames instead:

1971 250
1971 260
1971 270
1971 280
1971 290

With a lot of my files I would also add some text at the end of all these numbers to indicate important information about the photo, such as who is in the photo and other pertinent information. I essentially embedded captions in the filename. Again, I know lots of proprietary photo management programs allow captions, but to the best of my knowledge they only work within that proprietary program. If anybody knows this not to be true, please let me know!

So I might end up with a filename something like:

1941 345 Venice Sturgeon 10th birthday.jpg

Hardware

For photo prints I used a flatbed scanner. Actually, it is part of my scanner/printer combo that I bought for just over $100. Here are some similar units.

I tried this style of sheet fed photo scanner but didn’t have a lot of luck with it. If you feed hundreds of prints into the scanner without a protective sheath, then the rollers get dirty and you end up with lines on your digital images. The sheath was too difficult for me to use, because of my poor hand dexterity. If you don’t have this problem, then perhaps this style of scanner will work for you.

If you do use a flatbed scanner, then for efficiency reasons you’ll want to place as many photos on the scanner frame as you can. Then you’ll need a piece of software to crop the individual photos out of the single scan that you get. I’ll address that further in the software section.

For slides, I used a special scanner that I purchased from Brookstone. I couldn’t actually operate the slide scanner, but my son Zachary did it for me at 10 cents per slide :-).

Software

Every time that I scanned a group of photos onto my computer, I would load that sheet of photos into a program called Photoshop Elements. I would then use Photoshop to crop this group of photos into the individual photos. I also learned some skills for improving the images in the following ways:

Brightness adjustments
color adjustments
cropping individual photos
repairing blemishes
straightening crooked photos

One image problem that cannot be improved with Photoshop, at least to the best of my knowledge, is to take a picture that has poor focus and bring it into focus. I just don’t think that can be done, unfortunately.

I took an adult education course in Photoshop to learn these very basic skills. I’m sure you could also learn introductory Photoshop skills from a book. Other than cropping the photos, you don’t need to learn any Photoshop skills in the short-term. You can always come back and work on improving the photos if you later acquire the skills to do so.

Digitizing videos

My parents didn’t have any videos, but Kim and I had a collection of video footage on VCR tapes. I borrowed a device from a friend of mine. I also had to borrow a VCR player, because we allowed all of ours to disappear.

It was pretty straightforward to bring all of the video footage onto my hard drive. Note that these files are very large, and if you are short on hard drive space that could be problematic. You can always offload each video onto other media such as writable DVDs after you digitize it.

I went one step further and edited the videos to crop out any boring or irrelevant parts. I don’t have the skill to improve the videos as much as I was able to improve the photos, but at least I trimmed a lot of the fat. The software that I used for this is called PowerDirector.

Protecting the files

Every night when you go to bed, you should assume that when you wake up the next morning your computer’s hard drive will have crashed, and you will have lost everything on it. So you should never leave too much material on your hard drive that has not been backed up onto another device. I employ the following backup strategy.

I have a backup, standalone hard drive that I plug into my computer USB port. I back up any data, music, video, or picture files that I have on my computer. I do this about once a week or so.

But that’s not good enough. What if you have a house fire or water damage, or someone steals your computer and backup hard drive? For these reasons you also need to have your files backed up off-site. I do this through a program called Carbonite. I pay about $50 a year and my files are continuously backed up. In fact, if I scanned in five new photographs, within a few minutes this program would notice the new files and back them up. If a plane were to crash into my house tomorrow, and I somehow survived, I could reload a new computer with my personal backed up files from Carbonite’s website.

So all my important files exist in three places: my internal hard drive, my external hard drive, and the cloud (as provided by Carbonite).

If you have any suggestions to offer based on your own experience, please share them in the comments section.

If you have any questions at all, don’t hesitate to contact me at email@enjoyingtheride.com. I’ll do my best to help you.

What Do I Do All Day? I Digitize and Archive Family Photos and Videos

This is the second in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

I slowly turn the pages of a dusty old album, uncovering photos that I’ve never seen before, photos that perhaps nobody has laid eyes on for 50 years. The images looking back at me begin to paint a picture of what life was like for my ancestors in the 1940s, or 1950s, well before I was born. For a while it’s as if I’m on an archaeological dig, unearthing fairly interesting pieces of jewelry or pottery. Then I turn the page one more time, and a picture just jumps out at me. I pause and admire this rare artifact. Perhaps it’s my parents, before children, posing hand in hand. Or maybe it’s my mother, the sweet, god-fearing, angelic person that she was, her ball cap turned backwards, in a drunken embrace with her friends who are clutching bottles of whiskey. Maybe it’s a picture of me as an eight-year-old striking a thoughtful pose, belying a measure of wisdom not yet earned. These are the types of extraordinary memories unearthed by digging through long forgotten family photos. There’s nothing like it.

There are so many reasons that our knowledge of our ancestors is lacking, but some of those reasons do not exist going forward. We now have the ability, and I would argue the obligation, to share our lives, our times, with those who will follow us. One basic step toward that end is archiving family photos and videos. This is a task that I took up with vigor after I stopped working a few years ago. Only recently did I complete the first phase. The photos and videos are all digitized, and stored in a secure manner.

I realize that many of you are simply too busy for such a venture. But I have an abundance of time, so I took on this project from scratch, if you will. However, there are services available which will digitize these photos and videos for you. It may be expensive, but it is money well spent. Once you digitize the photos and videos, and store the files in a safe location (or two, or three), then you can take your sweet time doing whatever it is you decide to do with these memories.

But you need to get your images digitized, and you need to do it sooner rather than later, for several reasons. First, these old photos and videos slowly and steadily deteriorate over time. I saw this repeatedly with my parents’ oldest photographs, and it was a shame. Second, these old photos and videos are subject to being lost, or suffering damage from fires, floods, and leaky roofs, not to mention overzealous attic cleanings. Third, it really helps to catalog these items before the oldest members of your family have passed away. I started digitizing my father’s slide collection a few months before he died, and I was able to question him about several of the slides. However, much of my work was done after both of my parents had passed away. I so wish I could’ve asked about the circumstances of some of these scenes. But it’s too late now.

I enjoyed a mostly happy childhood, or at least that’s how I remember it. Throughout this archiving process I reconnected with my youth, and became newly acquainted with my parents’ early lives. Sure, many, if not most of the people in the oldest photos have passed away, but I feel their spirit anew. Along with the tender, nostalgic feelings come occasional moments of sadness and loss. However, my prevailing sentiments are those of connection, discovery, and delight. Because of what I’m doing with my ancestors’ materials and my own materials, future generations of my family will feel this way too.

It has been a physical challenge for me to scan so many photos. Because MS has affected the dexterity and strength in my hands, in most cases I was unable to remove photos from their albums or slides from their boxes, and then replace them after scanning. Zach and Kim helped me out significantly. Also, I took my sweet time. I probably never scanned more than 25 pictures in a single day.

Scanning videos was more straightforward. I borrowed a friend’s device that is placed between a VCR player and a computer, and the videos were simply streamed directly to my hard drive over the period of a few days.

Now that I possess this wonderful collection, both my parents’ photos and those of Kim and me (we didn’t start taking digital pictures until about 2000), I have many of options on how to share them. In addition to sending around DVDs, etc. to friends and relatives, I know there are online services to facilitate sharing. My parents’ collection alone is over 2000 photos, spanning 80 years, so I’m not sure which online venue is best. I think some sort of invitation-only format would be appropriate. Suggestions?

As many of you with MS can understand, after spending my entire adult life frantically advancing my career, it was more than a little deflating to suddenly stop. But it’s projects like this one that help take the sting out of being home on disability. I can’t think of a better use for my time.

In a separate post, I will share some of the nuts and bolts lessons that I’ve learned through this long process, for the benefit of those of you who might be interested in diving into a similar project.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog