klwilliams: (Default)
I've been accepted by Clinica Ruiz in Puebla, Mexico, to enter their program to receive what's called autologous hematopoietic stem cell transplant. What that means is that the treatment I'll be undergoing is the chemotherapy used for leukemia patients. What happens is that the doctors will give me something to stimulate stem cell growth, then will harvest some of my stem cells. That will be followed by ten days of chemo, which will target my blood cells, essentially killing off my immune system. Immediately following chemo my harvest stem cells will be reintroduced, thus giving me a rebooted immune system.

What this means in practice is that in three weeks I stop taking Tecfidera, my main MS drug, which has been keeping me relapse-free for four years. This drug inhibits white blood cell growth, so I need those healthy when I get my stem cells harvested. Not taking the medicine will affect my ability to walk even more, and I may even have a new relapse. I hope not. I'll be trying to stay relaxed, eat right, and exercise before I go. It also means I'll be stepping down from my board position at the American Bookbinders Museum, though I'll still be going to jury duty every Thursday.

Oh, and I'm raising money, because just the treatment alone will cost almost $60,000. My friends started a fundraiser for me, if you're interested: https://www.youcaring.com/karenwilliamsbrenchley-847292.

One thing I've learned over the years is just how awesome my friends are.
klwilliams: (Karen passport photo)
I've asked my neurologist what he would need to know in order to prescribe the chemo treatment for me here, rather than waiting for the Sheffield Teaching Hospital to get back to me. He'll probably say that he won't/can't do it, for FDA reasons.
klwilliams: (Karen passport photo)
This past weekend two of my friends were elevated to the peerage in the SCA, and I really, really wanted to be there to see it. The event was held in Arcata, CA, at a campground, which means uncertain footing that is also very difficult for a walker. I'd been all ready to go when I realized the day before that I just wasn't walking well enough. It's almost time for my every-three-months steroid infusion, which tamps down the MS, which means I'm at a low point for walking. Sigh.

Then last night Chaz and I and my good friend David (aka "aikido buddy Dave") went to see "Star Trek: Beyond". It was a lot of fun, though there were some problems once you start to think about it, so I'm not going to think about it. After the show I was very stiff, since I'd been sitting for almost three hours, and the movie ended at the time I normally take my pills. I got up and was moving slowly, but as I walked toward the main area of the theater my muscles relaxed more and more. I decided to use the restroom, and as I started across the floor towards the women's room I turned back to point to the hotdog station as the place where I'd meet them when I came out. Oops.

One thing I've noticed in the last couple of years is that if I turn my body while walking in one direction I get very dizzy. Guess what happened last night? So when I turned to point I realized I was suddenly dizzier, so I turned back towards the restroom and tried to walk in a straight line to reach a wall to grab onto. Um, no. My balance was off and my legs were stiff, so after about a step I knew I was going down, facing forward. I remember thinking that was a bad idea, when I found myself suddenly falling backwards, and landing comfortably on my rear end, with my head tucked up. I didn't consciously do anything to make that happen. David told me I still had my chops, which is good since I practiced safe falling aikido for twenty years.

In good news, though, my neurologist got back to me. He'd checked with some oncologists, and they all said that they'd never encountered anyone catching PML when using the chemotherapy I'm trying to have. So that's encouraging.

An idea

Aug. 15th, 2016 10:27 am
klwilliams: (Karen passport photo)
It occurred to me that since the MS cure is actually a well understood chemotherapy used for leukemia patients, oncologists who treat leukemia would understand the risks vis-a-vis something like the JC virus/PML. Do oncologists check for that? Do their patients develop PML?

So I've asked my neurologist and our doctor friend Helen these questions, and I'll see what answer I get back. Since I've never heard of leukemia patients dying of incurable brain infections (not that I necessarily would), I'm feeling better about that.
klwilliams: (Karen passport photo)
My neurologist has submitted the information for my referral to the stem cell replacement chemotherapy. I've asked our friend in the NHS to check with the hospital about JC and PML. Now it's waiting. (It might be a short wait. They might immediately come back and say I'm excluded for any number of reasons.)
klwilliams: (Karen passport photo)
My husband pointed out that, in the European way, today's date is 4/8/16, or 2^2, 2^3, 2^4.

I don't have grand jury duty today, for the third week in a row. We were told that having even one day off would be a rare occurrence. I'll enjoy the extra sleep and the chance at getting my own work done. I've decided to try consulting for realz, and my pitch needs some work.

Today Mac followed me into the bathroom when I went in to take my shower, and perched on the top of the toilet tank. He was very polite and didn't know the Kleenex box or the empty toilet paper roll off. He stayed there while I took my shower, and paid careful attention afterwards as I took my morning medication and brushed my teeth, etc. When I was done he cheerfully led me through the door, but headed off towards his food bowl instead of the bedroom. Nice try, but I wasn't following.

I talked to my neurologist yesterday. He pointed out that I have the JC virus (named for the first fellow they found who had it). It's very common; seventy or so percent of people have it. What matters, though, is that the virus can cause a horrible, fatal, non-curable brain disease called PML, and the only thing that's keeping it at bay is my immune system. If my immune system is destroyed, like the chemotherapy treatment I want to have, my chances of getting PML (the horrible, fatal, non-curable brain disease) go up.

He's going to see if the Sheffield doctors have anything to say about this. We'll see.
klwilliams: (Karen passport photo)
I've read the FAQ about the treatment I want to have, and I think I fit the criteria for treatment. I meet with my neurologist this afternoon to see what he thinks. And even if he does agree, he needs to send in a packet, and I need to get chosen. And it's not free for me, but I may have a friend who can help.

http://www.sth.nhs.uk/autologous-haematopoietic-stem-cell-transplantation-for-multiple-sclerosis/
klwilliams: (Karen passport photo)
I asked Helen, Chaz's good friend who happens to be an NHS doctor, to check with a teaching hospital in the UK that has tested using a leukemia treatment to cure MS. Would they treat an American, outside of a study? It turns out that yes, they would, if I pass their preliminary tests.

Um.

They sent a letter with a list of what they need to know (and how much it will cost, though the pound was at $1.325 yesterday, so that's something). I about to call to get an appointment with my neurologist.

I could barely sleep last night. My head is spinning, making plans. Because if I just have a plan I won't freak out. Entirely.
klwilliams: (Karen passport photo)
I'm in an odd place, with many choices. Or maybe one choice, really.

I need a job, and I'm very good at what I do, in my specialty area. Which means there aren't that many jobs available, and I'm not a man twenty years younger. Also, my stamina just isn't what it used to be.

My stamina isn't what it used to be. My ability to walk isn't what it used to be. My brain is back, though, or at least my ability to make decisions and act on them. My work on the grand jury and on the non-profit board seems to be well received, or at least nobody is complaining because they're thrilled someone is doing something, and for free. I'm digging in to learn machine learning at a deeper level, and I've decided to get a security certification (an industry one, not via Coursera), because I think my ediscovery interests will align well. But my stamina isn't what it used to be. When I come up with my brilliant idea for a startup to make billions, will I be able to do any of the work?

Plus, I'm reaching the point where I'm likely to start tipping even further downhill. I need to be able to work. I have a husband, cats, and a turtle to feed, plus medical bills all around. I need to shore up retirement money, not dig into it to pay the mortgage.

So, I'm going to find a place that will kill off my immune system and restart it with saved stem cells. I just need to have enough brain to do the research. Wish me luck.
klwilliams: (Karen passport photo)
I rested today and used my walker (because I had to, which is its own suckiness), but this evening I took a long, slow ride on my bike. I made sure to do full stride pedaling, if that's a thing, where I try to use the entire length of my leg. I could feel my knee responding to it, and this evening I can walk around a few steps at a time without my walker. The muscles around my knee are still very weak, though, but they are responding. We'll see how they are tomorrow.

Thanks for the support. I really appreciate that. Bones has started up again this season, and **spoiler alert**
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**spoiler** the character Hodges, who was paralyzed at the end of the last season, finds out he is actually permanently paralyzed. He doesn't respond well to this, and I found myself agreeing with so many of what he was complaining about. Most of it is the inconvenience (having to go around to an out-of-the-way ramp instead of taking the stairs) or the embarrassment (having to take a public, noisy lift, like the one I need to use to get myself and my walker onto Caltrain), but one thing I didn't agree with was his hostility towards his co-workers and his wife. Yes, it sucks for him, but it sucks for them, too, plus I think it's worse having to watch someone else go through something that it is to do it yourself. OK, not really. But I get that. They're trying to help him, and he's being a dick. Don't be a dick.
klwilliams: (Karen passport photo)
So last night Chaz was having trouble sleeping, so he was up reading in the living room until very late while I was sleeping. Mac appreciated having a human awake, so he sang his enjoyment around the house a couple of times. About the time Chaz got to sleep I got up to use the bathroom. My left knee (the one I had surgery on years ago) hurt worse than usual, and I had trouble walking to the bathroom. I decided to stay up a little bit myself and see if the pain would lessen (helped by Ibuprofen and Baclofen). Once my knee felt better (and I'd killed off a few WoW creatures) I headed back to bed. And fell over after two steps.

Yup, my left knee has decided that walking on it is just not happening. Chaz brought my walker inside, and I need it for any step that involves my left leg. I can drive just fine, but the left knee is really wobbly, and the muscles around it just not able to support me. I think this is much more knee than MS, though the MS I'm sure is piling right on. I'm standing and stretching periodically at my desk, and I think it will be fine fairly soon, but still. We had to miss a friend's 50th birthday party today, which disappoints me quite a bit. Fortunately we don't have anything scheduled for tomorrow, so I can continue to rest and stretch. But damn, I want a body that works.
klwilliams: (Karen passport photo)
Resistance exercise, that is. I got an email from the MS Society with a link about MS and aging. The scary news is that people with MS who are over age 55 are more likely to have the secondary-progressive form of MS, and I'm 52. My symptoms have actually been improving steadily since I started taking Tecfidera, though I still have a lot of problems. The last couple of months I've seen some changes, but some are better and some are worse, so I don't know for sure how to gauge things. The article is mostly about how MS symptoms are similar to normal symptoms of aging (like aging is a disease - interesting thought), but they do say that exercise is key. I've ordered some exercise bands, and I'll keep doing yoga and riding my bike. And crossing my fingers.
klwilliams: (Karen passport photo)
On Thursday, eight days after they first declined my prescription of Tecfidera, I got a letter in the post* telling me that they had done so. They had a vague mention of my not having clinical work done, to cause this, but they didn't actually say what that clinical work was. They did helpfully say that I could appeal this decision by writing them a letter and mailing it to the address below, but they didn't give me any timeline for when they would respond. In the meantime, had my friends not used twitter to help intervene, I'd have been without medication, for weeks. And Aetna would have saved thousands of dollars, so their stockholders would have been happy.

Today, three days after that one, I got a letter saying that Aetna had in fact approved Tecfidera after all.

Thank you all, and thank God for Twitter.



*new word I learned from my husband
klwilliams: (Karen passport photo)
I made popcorn. By myself. I walked across the house (only about twenty steps, for you Fitbit fans) to the kitchen, reached up to the top shelf of the cupboard -- quite a stretch for me if not for my husband, who was in his study -- and pulled down the box with the popcorn bags, pulled one out and put it in the microwave. I stood in the kitchen, upright, for two minutes while the popcorn popped. I walked across the kitchen a couple of times, to get a drink, to get a napkin, but all the time standing up comfortably. I now, having walked the twenty or so steps back to my study, I am eating my popcorn.

Why is this a big deal? Because twenty-one months ago this would have been impossible for me. Two years ago I didn't feel well enough to travel to England to celebrate my fiftieth birthday with friends. Two months later my father died, and at the end of the month I had a very hard relapse that left me barely able to stand upright or walk more than a few steps at a time. I had been taking the injectable drug Rebif, which worked my trying to suppress my immune system. It may have helped, but I slowly got slower and slower and stiffer and stiffer. I had just switched to Tecfidera, a pill that by reports worked much better than any other medication. I was terrified. Was the new drug going to help or make things worse? I've since learned of cases where it did in fact make things worse, but at the time the drug was too new on the market for me to have heard much about results.

Now it's twenty-one months later, and I still have problems, but I'm much, much better than I was. Tecfidera has helped tremendously, which is why I'm very reactive when my insurer, Aetna, keeps trying to deny me coverage. I appreciate it when so many people help me out to get them to change their minds. I'll have a new shipment early next week. I am so lucky so have so many friends. Thank you all.
klwilliams: (Karen passport photo)
As many of you know, I have MS, which dramatically affects my ability to walk. At one point, before I started taking Tecfidera, I could walk about ten steps at a time, and could only work from home. After a year and a half on this new drug, I can now walk upright for up to a block at a time, stand up with only minimal stiffness, and work in an office quite easily. But, Tecfidera is expensive.

February seems to be Aetna's month to screw with patients. It was February last year that they started this game, too, and this February they began by making me move from using the good Specialty Pharmacy, that it, Walgreen's, to using their own. Then, after the first delivery, which meant a lot of extra inconvenience but otherwise went smoothly, they decided to start denying my authorization for the drug. After a week of this, I still have no reason, even though my doctor's wonder nurse who can solve every problem was told everything was fine (except it's not). So it looks like they're going to keep playing this game, and my pill supply is running out. I have pills until Monday. Will I be able to walk on Tuesday?

AEtna sucks.
klwilliams: (Karen passport photo)
I've been sitting around the house all week, mostly using the computer, but not getting anywhere near a useful amount of (fitbit-counted) steps. I'd been up to over 5,000 a day before I got laid off, and now I'm down to fewer than 2,000.

Today Chaz suggested we go for a walk on the path along the Bay, a walk I used to love doing. We tried it today, and I managed about 20 minutes (1200 steps). I didn't quite make it from the parking lot (at Shoreline Park, right down the street from where we were married and where Chaz proposed to me) to the Bay, but it was a lot of fun to be out there. We'll try again soon.
klwilliams: (Karen passport photo)
As you may know, I have MS. For a while I was taking a drug called Rebif, a series of shots three days a week that suppressed my immune system. The idea is that since my immune system is so good it's bored and has started eating my nerve endings, suppressing it will slow down this behavior. Over the last two years, while my health in general seemed to be stable, my ability to walk got worse and worse.

Enter Tecfidera, the wonder drug. While Rebif (and all the other drugs to that point) would at best suppress about 35% of MS symptoms, Tecfidera (a pill rather than shots) suppresses 50% of symptoms. I started on Tecfidera as soon as it became available. When I started on it, I could walk maybe ten steps at a time, and was working at home. I started using a walker, and needed it to get around my house. Now, less than a year later, I don't use the walker around my house, and only use it to get to work (a 40-mile trip by train and bus to downtown San Francisco) or to walk around open areas where there aren't convenient handholds or places to sit. This week, I was able to ride my bike (an adult trike) the mile downtown, park the bike, walk without a walker into a restaurant to order soup to go (to take back to my husband), and brought it back home. This is huge.

The problem? I have new insurance, Aetna, much better than my old insurance. My current three-month supply of pills was going to run out, so with a three-week supply still at hand I called my pharmacy. MS drugs are acquired through specialty pharmacies, since the drugs need special care, so they need to be shipped via UPS/Fedex. This isn't a ten minute trip downtown. They contacted Aetna for an authorization, who asked for a "prior authorization" from my doctor. Who sent it immediately. My pharmacy (Walgreen's Specialty Pharmacy, which is a dream pharmacy, and in fact a great model for any business. They're just that good.) keep checking in for the official OK, but nothing from Aetna. This past week, with my supply running low, I finally reached someone at Aetna on Wednesday, who said that a nurse needed to OK the prior authorization. I explained I had only a week's worth of pills left, but he said it might take two days. So on Friday I reached someone there, who said that the nurse couldn't OK it, a doctor had to. Why? Because while I had tried Rebif, I hadn't tried another drug (of the same type, that only has a 35% success rate) before moving to Tecfidera. But the man on the phone said he'd send it to a doctor and ask for an update by that night.

Today I called Walgreen's. Nope, nothing. I called Aetna. Nothing. They're not open. On a three day weekend. I run out of pills on Wednesday. I'm not going to get new pills in time. In fact, if Aetna tries to make me try this other drug, it may be a while. For one thing, if I have to take this new drug, my ability to walk will definitely deteriorate. Just when I had hope of getting off the walker entirely soon. Just when I had the outside hope of maybe being able to study aikido again (I am a black belt, after all). Maybe. Or maybe not.

Aetna, why are you damaging my ability to walk?

Food

Oct. 14th, 2013 02:30 pm
klwilliams: (Karen passport photo)
Several years ago I finally found out what was wrong with my back, which let me get started on Weight Watchers (because I could exercise as well as diet). This led to me losing close to 70 pounds, though I've gained back most of it in the last couple of years. (MS diagnosis -> slowly losing mobility -> eating to feel better -> getting much fatter)

My husband cooks for me. He's a fabulous cook. He makes our bread, he makes our bacon, he grows our vegetables. I don't try to figure out the WW points for what he cooks, because I'm too lazy and, well, because the number would be high. However, I'm trying to follow Dr. Terry Wahl's diet to reduce MS symptoms, and it appears to be working, along with the exercising and medications I'm taking. Plus, I love all the vegetables and fruits.

Still, today I drove to McDonald's to grab a Big Mac meal for lunch. Note that I didn't use a walker at all, though that was just to walk to the car and back. I had a craving for fast food, and I ate it, but tomorrow for lunch I'll be in SF and can grab a fantastic kale salad from The Plant Cafe.

This has been an interesting time for me, regarding food. I need to pay more attention to weight management, but Chaz has been great at helping me eat well, both healthily and satisfactorily. This is an interesting time.
klwilliams: (Karen passport photo)
At the beginning of June I had a big relapse. I suddenly could barely walk. I could walk from our bed to the bathroom (about ten steps), and from either to my study, which is just off the short hallway between the two. I could walk into the living room as far as the couch, but not all the way to the kitchen. Going to work? Not possible.

Fortunately I'm all set up to work from home, and for June, July, and most of August that's what I did. I also had a steroid infusion shortly after the relapse, which improved things, and I got a walker, which I've mentioned before.

I could ride my trike, which I've been going almost daily, but I couldn't go to yoga. I tried doing yoga stretches in my living room, but just couldn't manage most of them. But, I kept trying. I also started Dr. Terry Wahl's diet that helped her tremendously with MS, which meant (Chaz makes me) a smoothie in the mornings from three cups of different types of berries, greens for lunch (mostly spinach), and cruciferous vegetables at dinner time. There are other foods in other proportions, but that's the main list.

It seems to be working. Last week I had another steroid infusion, but even before that I'd started walking without a walker around the house. I can now walk farther without the walker. Even more important, I went with [livejournal.com profile] jeanvieve to a yoga class on Wednesday, and could do all of it (except pigeon pose, which my knees just do not like)! I'm feeling so much better, it's amazing.

I still need my walker for balance, but I walk behind it much more quickly. I still freeze up if I sit down too long. I still get tired easily. But still, compared to three months ago, I feel incredible. I hope this continues.
klwilliams: (Karen passport photo)
The new MS drug is called Tecfidera. I get the starter kit on Wednesday. I'm very, very excited.

What this means is that I get a week of quarter-strength pills, then three weeks of half-strength pills, then the full-strength pills. Side effects are flushing of the skin (which I already have, to some extent), and GI problems, but these go away over time. I also learned that all MS drugs need to be mailed from a specialty pharmacy. I thought it was just shots. My favorite specialty pharmacy didn't have any ready to go, so I got the first month's worth from one my doctor recommended.

Wednesday.

Oh, I hope.

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