Temple of my Daydreams

Let me take you with me to the place my mind returns to, several times each day—the restored Buddhist Temple and current AirBnB tucked above the beach in Laupahoehoe, on the Big Island of Hawaii. It stands maybe a five minute walk away from the rocky shore where my husband’s ancestors arrived from China. I could not have asked for a better place to spend the last few days with our son before he embarked on his new adventure: a two year gig in China.

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The rental car places on the Big Island didn’t offer hand controls on their vehicles. This meant I never had to keep my eye on the road. I got to stare out the window and seek glimpses of the ocean  as our shiny red Jeep would peel off the Belt Road and descend onto Laupahoehoe Point Road.

15mph

The Jeep would rattle. Our son, sitting shotgun, would firmly remind his father, “Fifteen miles an hour,” as we approached another blind curve.

lower

We would pass hand painted signs. Slow Down. Don’t Spray.  When I would catch sight of the bridge, my heart would expand with anticipation.

bridge

It won’t be long, now.

temple in sight

I can see the minty green Jodo Temple up ahead, tucked just beyond another hairpin turn as the road descends ever closer to the shore.

closer temple

We arrive at last.

arrived

Outside the Jeep, we can hear many bird calls unfamiliar to our ears. We can hear the faint steady pounding of the ocean. A white wicker stool on the porch contains a sign reminding us to leave our shoes outside. Mahalo. Thank you.

We see a cat or two or five skulk past. We rarely see the caretakers. They are as silent as shadows.

As magical as it is outside, I am elated to go inside. Something—no, everything—about this house soothes me. The furniture consists of an eclectic mix of state of the art lighting and kitchy beach-casual tag sale treasures. I, who have little tolerance for tchotchkes, am deeply enchanted by each object.

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livingroom

When we first arrived, whooping with delight over the character and charm of the place,  I hadn’t even made it through every room in the house before I caught myself thinking, “How can we get back here?” My desire to seal it all in my memory was immediate, and fervent.

My practice of going through each room in my mind began before I even left the place. I made it a habit to flop on my bed and stare up at the wire and crystal light fixture hanging in the corner, then close my eyes and attempt to recreate the lamp in a mental picture. I’d be disappointed, every time I opened my eyes, by my inability to create and maintain a mental impression which matched the reality of what I had just seen before me. I lamented the paucity of detail I could expect from future memories far from here.

light fixture

It is probably too late in my life for me to become a materialist. But if I could be converted, it would be through the carefully curated fabrics of each soft blanket, each sun-faded curtain I encountered there.

 

blanket:curtain

sunfaded curtain

 

This BnB has no air-conditioning, which would usually pose a problem for me, as my MS is heat sensitive. I didn’t stop to check for this feature, for any feature, before booking the place. I scanned through the images of gleaming wood floors and a private, sun lit yoga studio above the tempting headline—Peaceful, former Buddhist Temple—and I was hooked. I had to book. Immediately. Who wouldn’t want their own freakin’ yoga studio just upstairs from their living quarters? Everyone, right? It was only after I’d entered our credit card number that I noticed the place had no kitchen, just a well stocked snack station with a refrigerator. When my husband asked, “Does it have a bathroom?” I’d snapped, “Of course it does,” desperately scanning the text I’d neglected to read in my haste. “It has one and a half bathrooms, as a matter of fact. An outdoor shower. And a clawfoot tub.”

This lovely place would reveal many more amenities over time. Such as, our own private waterfalls. More on that later. First, I will have to take you on a tour of the yoga studio. You will need to meet the yoga cat.

 

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Thirty Years of Living With Multiple Sclerosis Hasn’t Been A Walk In the Park.

Saturday, I walked through four parks. I did not walk alone, or unaided. My husband and son were there to give me an arm when necessary. My REI poles gave me the superpower of two added appendages.

When I first got my diagnosis, my fear of disability was entangled in a fear of losing access to wild places. I didn’t want my travels circumscribed by smooth asphalt. Give me rocks, sand, dirt trails. Saturday, all four mediums were at my disposal as we explored the Big Island of Hawaii.

My husband and I greeted the sunrise at Laupāhoehoe Point, the rocky shore where his grandfather first arrived from China.

It felt right to be there. Our son has accepted a two year position in Beijing. In a few days, he’ll be flying to his new job / ancestral home.

After visiting the point, we returned to our lovely AirBnb, a renovated temple, where our son could justify sleeping in as his preparation for Beijing time.

I unwound with some yoga.

The ocean breezes skimmed across the room and cooled my skin.

Then whole family set out for Waipio Falls.

The falls were stunning. But I forgot to take a picture. I was a bit rattled.

My husband was very keen on driving down this, the steepest slope on The Big Island, to get us to the falls. He’d rented a Jeep for the four wheel drive.

I’d imagined he’d rented the Jeep because his poor disabled wife couldn’t make it down this long perilous incline on foot. But no. Driving down a one and a half lane mountain road at 70 degree incline turned out to be his idea of fun. The road was so narrow, one vehicle had to fold its side view mirror to passu us. We made it through.

Our next stop was Akaka Falls.

The windy paved walkway around the falls gave us easy access to breathtaking views.

We wrapped up the day strolling through a lovely park in downtown Hilo.

I wish someone could have told me when I was first diagnosed that my days of access to beauty and wonder were far from over.

Why Do I Always Opt to Join the Trial?

You can always rely on me — to join a clinical trial. If there’s a choice, say, between starting an MS diet and starting a clinical trial of an MS diet, I’ll opt to join the clinical trial. (I still regret that diet trial.)

When Dr. W told me I’d have to stay on an MS drug to be part of the TRAP trial, I didn’t consider dropping the TRAP trial. I went right back on Tecfidera with nary a reservation. I was finished with being flummoxed. My reservations about Tecfidera were suddenly forgotten—like my initial reservations about the TRAP trial.

When I’d first seen the letter from the NIH addressed to me as a candidate for the TRAP trial, I’d thought — no, hoped — they had sent it to the wrong person. Because this was a trial for people with progressive MS. I didn’t have progressive MS. I had the sportier version of MS—relapsing/remitting—and I hadn’t relapsed in years. I was a success story. Wasn’t I?

At that point, I had just joined the Wahls Diet trial. I intended to eat my way out of MS. And of course, since I was doing this dieting through a clinical trial, and not through a cookbook, this meant the outside world, including the NIH, would benefit from the data I’d contribute as I healed myself, one cup of veggies, one sprig of seaweed, at a time.

Well, over one thousand cups of veggies later, I have come to accept that I have progressive MS. This doesn’t mean what I’d thought it meant. Apparently I can still pass as able-bodied. (I got some affirmation just an hour ago, when my husband and I were out walking our dogs and a neighbor made some comment about my power-walking with my trekking poles. She and her husband were genuinely surprised/alarmed when I told them I was using those poles because I have MS.)

The progression of my MS might still be invisible on the outside, but MRIs detect gradually worsening brain atrophy. Lumbar punctures detect the breakdown of the mitochondria in my cells. I detect, in a myriad of subtle ways, that I am moving with greater difficulty through the world.

Current MS medications address one aspect of MS — they are measured in their ability to prevent relapse. They do nothing to address the brain atrophy and cellular damage that accrues over the years. The researchers at the NIH want to address all aspects of MS. The TRAP trial looks at four medications that might work to supplement the treatments that are already out there. Pioglitazone, Montelukast, Hydroxychloroquine, and Losartan have already been FDA approved for other diseases, and may have properties that could assist against MS.

In the future, MS patients may take multiple drugs instead of just one, much as AIDS patients do today. And while I am not jumping up and down for joy at the idea of us MS patients adding more drug burden to our already overtaxed bodies, I am even less willing to add more disease burden to my already overtaxed central nervous system. If I need to take an MS drug to be a part of the TRAP trial, I’m willing to stick with Tecfidera. The drug I’d be paired with, Montelukast, aka Singulair, has been shown to rejuvenate the brains of old rats in clinical trials. This old Lab Rat wants to give it a try. I could use some rejuvenation.

The funny thing is, I don’t have to rejoin the trial to take Montelukast. I could go to my GP, who likes me well enough, complain of a runny nose, and get prescription for Singulair. With the NIH out of the loop, I could skip taking Tecfidera, not to mention all those MRI’s. I could do my own brain hack.

Why don’t I? The same reason I don’t do my own plumbing. I need the best minds I can find to keep me out of deep shit.

In this trial, the researchers are going to see if they can get the same cellular information from tears as they do from spinal fluid. No more lumbar punctures? Now that’s progress—the good kind.

I Quit Tecfidera. Until I Quit Quitting Tecfidera.

I have a long history of quitting. I quit cigarettes decades ago. At least a dozen times. When cigarettes hit the intolerable price of $1.30, I reached my tipping point. I never bought another pack. From what I hear, cigarettes are considerably more expensive in the 21st Century. My being a quitter must have saved me a fortune.

When I reached my tipping point to quit Tecfidera, it had nothing to do with money. Thankfully. My copay was $0. No one should have to quit an MS drug because they can’t afford it.

My quitting Tecfidera had nothing to do with any conviction I can beat MS through exercise and diet (see photo of my Monday morning breakfast: spinach, husband’s grilled swordfish, asparagus, onion, radish.) I’m doing everything I can, but I don’t expect any cosmic reward. As my dad often says: Life isn’t fair. Chances are, Gentle Reader, you breakfasted on something like half a bagel with cream cheese —foods I’ve  forbidden myself from eating—and your immune system merely thanked you for it. My immune system may have thrown a hissy fit over such a meal. Or not. I’ve past the point of taking such a risk.

I quit Tecfidera because I didn’t understand how it worked, or if it worked, or if it would work for me. (Thank you, A., for researching the chemical processes.)  I could tell Tecfidera made my skin furious if I didn’t take an aspirin first. I avoid food that makes the MS monster mad. Why would I take a drug that makes the MS monster mad?

I quit Tecfidera because every time I considered I might quit, I felt at peace. The rest of the time, I felt…flummoxed.

So I told Dr. Z  I quit. I told my husband I quit. I told the drug company I quit. Nobody gave me any guff. Then I called the NIH.

You’ll need some backstory. I’ll be the first to admit I am a terrible blogger. For years, I’ve ignored basic blogging etiquette, such as adding a photo to a post, or including a provision for comments. For a long while, I’d let my domain name lapse. I could never be bothered to comment on MS blogs that I find inane and boring. Or even comment on ones I find fascinating. I dropped out of Facebook, so I no longer pulled in those followers. Gentle Reader, it’s a wonder you made it here at all. You must have a genuine interest my story, and I thank you. Which is why I apologize for having violating a basic norm in storytelling, which is to tell a whole damn story—beginning, middle and end.

A few months ago, I’d had this idea I would take you through one day in the life of an MS patient visiting the NIH for a clinical trial. I created a new category on my blog: “TRAP trial.” I wrote a few posts.  This series got as far as about 9:45 am, EST, in my day of the life in the TRAP trial. And then a cataclysmic event occurred in my actual life with MS—maybe my drug was dropped?—and I posted about how everything was upended. And didn’t look back. I never wrote the post I’d planned about meeting up with the nurses who have literally held my hand through my MS trials. Or the post about meeting the brilliant woman, young enough to be my daughter, who has developed an app that allows me to perform clinical MS tests myself from the comfort of my own home. I never wrote the post that explains how Dr. Bielekova persuaded me to join the TRAP trial in the first place. And I never introduced you to the indomitable Dr. W. This is some shabby storytelling, indeed.

Let me begin to make amends by introducing you to Dr. W. She has quite the reputation. This is a woman who worked her way to the top on the not terribly level playing field of NIH, where, to this day, only 22 percent of tenured research scientists are women.

When my NIH nurse discovered Dr. W would assume my clinical care, the nurse told me I’d been assigned a neurologist who works only when she wants, and only on projects that interest her. That’s pretty badass.

Meeting Dr. W was like witnessing a 60’s era Katharine Hepburn stride into clinic. There was a hint of horse stable residue clinging to her expensive yet practical shoes. Dr. W springs from a Kentucky pedigree, and bonded with me over her knowledge of Cincinnati. Every subsequent time I’ve seen her, she refers effortlessly to minute details of conversations we’d had months before. Either she is a prodigious note taker, or she doesn’t forget a thing. I suspect the latter.

When I called Dr. W to announce I’d quit Tecfidera, the script didn’t run as it had when I’d rehearsed it on all the other players in my various MS spheres.

Once she got over her surprise that I was on Tecfidera in the first place—she’d been favor of Ocrevus—she insisted I get on “some MS drug” and stay on it.  Even Tecfidera would do. It was the only way I could rejoin the TRAP trial.

We weren’t on a FaceTime call, so she couldn’t see my facial expression drop like a hangdog Spenser Tracy after receiving a tongue-lashing from his whip-smart leading lady. While I have already demonstrated I can persuade just about anyone else of the diminishing returns of taking MS drugs after the age of fifty, I didn’t even try to argue with her.

I told Dr. W I would go back on Tecfidera.

I would rather quit quitting Tecfidera than quit the TRAP trial. Barring a new cataclysmic event interrupting my life’s narrative, I promise I will devote the next post to explaining why this Lab Rat thinks it’s worth it to resume Tecfidera and scurry back into the TRAP.

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Flummoxed (Part 4 of 4)

My friend Monica also has MS. She does not medicate. Which is not to say she does not treat her MS. Monica chooses her activities carefully. She exercises every day. She chooses her food carefully, following a Wahls-like diet, or what some of us call an auto-immune protocol. (AIP) Monica is also an exceptionally kind and gentle—non-inflammatory—person. (Am I implying MS is an expression of a personality defect? I hope not. I’m just observing that it’s hard to create a spark without any friction. Every life has friction. Monica seems to have a talent for not creating any friction, herself.) Monica never tries to talk me into living medication-free. I never try to talk her into taking medication. (I might have made a recommendation to take Singular, an allergy drug that has been shown in the lab to transform the brains of old rats into brains that function like young rats. But that’s for another post.)

When Monica texted to ask what our neurologist had to say about my rash, I wrote, “Z says he will support my decision even if I stop taking FDA approved drugs. But it’s such a tough call. If I’m wrong, and I get an exacerbation, I’ll blame myself. If overheating on this drug gives me an exacerbation, I will also blame myself.” I was perhaps exaggerating  (or as we as say in my family of origin, ‘over-exaggerating’) when I texted about the perils of overheating. Overheating merely creates pseudo-exacerbations, or transient worsening that last until the MS host cools off. Pseudo-exacerbations sure feel like the real thing, but they don’t bring on permanent damage (as far as we know.)  You see how Monica and I are opposites? Even after years of daily work to mellow out, I still have a tremendous talent for creating friction out of thin air.

Monica texted, “Yes, it’s a tough decision. Think we should decide not to blame ourselves either way. I will always support you, wwld* :)”

*wwld is of course short-hand for what would Lisa do? Feel free to sprinkle this liberally all over the internet, like lesions on an MS MRI.

Note that when I texted that I’d decided to drop the Tecfidera, Monica didn’t text back, “told ‘ya so,” or “welcome to revolution against rapacious Big Pharma” or anything. The Lisa she knows is a much better person than Ms. Lab Rat.

Her sweet response was not at all surprising. I didn’t expect to get any guff from Monica. The guff, when I got it, came from an entirely unexpected quarter.

 

 

 

Flummoxed (Part 3 of ?)

I get a phone call from my youngest sister, PYT, a.k.a. Pretty Young Thing, just as I am flopping down in the driver’s seat after a lightweight workout with my toys at the gym.

PYT has three Young kids, four and under, who are competing with me for her attention. I win. Intermittently.

I tell her I’ve capitulated. I’m taking my new MS drug just as the doctor ordered, thirty minutes after an aspirin. “I splurged and got myself the kiddie kind.”

“The orange ones? The chewables? The ones that taste like mom loves you and everything is going to be OK?”

“Exactly.” Oh, it is great to talk to someone who knows precisely what the aspirin summons—not only the specific taste, but the specific aura our mother would convey while doling it out.

Now that I take Tecfidera after an aspirin, and a meal with a bit of fatty food—I love my avocado, I love my coconut milk—I don’t get a rash. Or an allergic reaction. Whichever. Dr. Z. had warned me it might take weeks for the rash to stop flaring up. The rash had stopped immediately.

And yet. I don’t trust the lack of rash. You know those times when your room is a mess and your mom has threatened to inspect and you shove all your miscellaneous underwear and books and socks and chewed pencils under your bed, and it’s still a mess but it’s a hidden mess? Well, PYT and I never did that. The hidden mess was our middle sister’s speciality.  (She’s the pragmatist of us three.)  Our  messes were always flagrant—out in the open. And no, we never got points for honesty. But we’d always thought we ought to. Go ahead, roll your eyes. This is not a sentiment I’m proud of.

Am I the same person now? Hell, no. I suspect I’m not the only person with MS passing (less and less often) in public as able-bodied while actively concealing I’m a total hidden mess.

PYT knows me, the past me, the one who’d railed against the hidden mess. She gets my reservation that maybe taking the aspirin is just the same as shoving a mess under the bed. Does the aspirin genuinely alleviate my body’s resistance to the drug, or does it just push the resistance under the surface, where it can’t be seen?

We ponder this distinction as my four year old nephew explores the new paint he’s created by reconstituting dried out markers and as his twin sister mixes that paint with an entirely unacceptable color and as their younger brother decides it’s time to pee.

We wonder if the new drug is even worth it, given the conclusion of the meta-analysis of over 28,000 MS patients from 38 clinical trials that most current DMTs (Disease Modifying Treatments) are fairly useless for the average patient by the time they reach my age. We ponder Dr. Z’s point that I might be an “outlier” — which sounds kind of cool — unless “outlier” means that without drugs I might be the one to get hit with an exacerbation that could permanently disable me further. His distress over this possibility is nothing to dismiss. I’ve looked around his waiting room. Not everyone with MS has the luxury of describing themselves as a hidden mess.

I share the latest conclusion about the three types of MS—which is that relapsing/remitting, secondary progressive, and primary progressive MS are not three different diseases, but rather, three phases of the same disease. The FDA approved DMTs may prevent relapses, but do nothing for other processes known as “compartmentalized inflammation,” which do not show up on MRI’s.  These are the messes under the bed, so to speak. Or more specifically, the messes inside the cells.

We speculate that maybe all those years I had credited Zinbryta for stopping my MS attacks, the change could have really been more of function of my slipping insidiously from relapsing remitting MS into a more progressive phase of a disease, where the breakdown can’t be detected by the MRI, but rather, by the lumbar puncture.

“It’s like a vicious dog that hasn’t bit anyone in twelve years on a muzzle, and I’ve credited the muzzle. But maybe the dog has just mellowed out with age.”

PYT chimes in, “And maybe the muzzle has been annoying for the poor dog.”

PYT and I are both dog lovers. We aren’t fond of muzzles.

I say, “Maybe we just have to be realistic about my MS. It’s a progressive disease. Slowly but steadily, I’ve been progressing. The drugs that work to stop relapsing remitting MS can’t do a thing about the kind of progression I’m experiencing inside my cells. Maybe it’s time to stop fooling ourselves by my taking a drug that only helps for an early stage of MS. I might be way past that phase.”

PYT says, “It sounds to me like you have taken your last Tecfidera.”

My flummoxed feeling is lifting. I starting to feel like myself again. (Talking with a sister will do that.) I share the last thing Dr. Z. said to me, “I will support you even if you don’t want to take any medication.”

His unconditional support means so much. PYT warns me that our mother and my husband will resist my urge to give up the medication. “As they should. They love you. They want to protect you.”

Protect…me? When we were growing up, I never cast myself as the damsel in distress. But that’s the role MS has forced me to play my entire adult life.

 

 

 

Flummoxed (Part 2 of ?)

I find it super uncomfortable to read articles in scientific journals. Even articles about MS. Even articles about MS illustrated with lots of pretty graphs. Maybe…especially articles about MS. These are articles I have to understand as though my life depended on it. Because it does.

You know how some people publicly (and most people privately) grouse about how higher math is irrelevant for most of us after we get out of school—so why make students suffer? Well, I wish I’d paid more attention when I was taught statistics. Turns out, I need to understand them in real life. I wish I’d had a semester or so learning to become a fine print detective, that the teacher had made terms like  “de facto” feel like shiny keys to hidden treasures. I wish I’d not learned to gloss over any text in the form of an equation like this one:

IDPDrugversusPlacebo=100%(1(1IDPDrugversusIFNβ100)(1IDPIFNβversusPlacebo100)).

Because no one is going to tell me the stuff I am learning by reading research articles in Frontiers in Neurology. Stuff like: “Higher efficacy treatments exert their benefit over lower efficacy treatments only during early stages of MS, and, after age 53, the model suggests that there is no predicted benefit to receiving immunomodulatory DMTs (Disease Modifying Treatments) for the average MS patient.”

I admit, I haven’t been going to enough MS Society events. But all too many of them are paid for by pharmaceutical companies, who may have a conflict with informing you that, after you reach a certain age,  their drugs are no longer particularly useful. (Not to mention, some of their drugs are not particularly useful at any age.) I don’t know about you, but I know an awful lot of people over the age of 53 who are taking a DMT (Disease Modifying Treatment.) These treatments can cost in excess of $7k per month. Very few of these people seem particularly well. More than a few complain of side effects from their medications. What would they think about this article? Have they been enduring pills/injections/infusions that are doing them more harm than good? Have I?

I’m not going to be too hard on myself for having trouble navigating the facts as presented. At one point, I’d sent a link to my son, who majors in math and economics at Vassar. My heart leapt when he messaged me back. Then I saw he was messaging with a question, not an answer: “Does this thing have cliff notes?”

When Dr. Z returns my call, I am stuck on one particular paragraph, which distinguishes higher efficiency drugs from lower efficiency drugs. I notice the drug I’ve lost access to, Zinbryta, is classified as a higher efficiency drug. Whereas Tecfidera, the drug that is causing my skin to redden and prickle, is classified as a lower efficiency drug. I’ve downgraded! Nobody likes a downgrade. And nobody likes their skin to prickle and burn.

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Dr. Z tells me he’d gotten the picture my friend Monica had taken of my angry skin. I ask him if it looks like an allergic reaction. The fine print that came with the drug was very clear on one thing: “Do not use Tecfidera if you have had an allergic reaction, such as welts, hives…”

I want him to use the word, “hives.” Instead he asks, “Did you take aspirin thirty minutes before you took the medication?”

“Like you told me?”

“Yes.”

“No.” I hadn’t wanted to mask the effect of the drug. I’d wanted to know exactly what my body thought of it. The reaction had been fairly unambiguous, I thought. Didn’t he?

He says rash is a common side effect, one that would generally recede after the first few weeks, or could be averted entirely if I were to take an aspirin beforehand.

I counter that even if this was a side effect, and not an allergic reaction, I just wasn’t sure the side-effect of this drug could ever outweigh the benefits of a low-efficacy therapy.

He says, “You’re talking about that paper again. Let’s remember that you may not need a high efficacy drug at this point in your disease process. You might be past the inflammatory phase of your disease. But you are not out of the woods yet. I have patients in their seventies and eighties getting relapses. I wouldn’t want that to happen to you.”

I don’t want that to happen to me, either. I promise I would give Tecfidera another chance. I would try taking the aspirin 30 minutes before the drug, as he had told me. And wait and see.