Health Update Month

Most of November, at least weekly, I'm being checked, drained, infused, walked, PFT'd and otherwise followed up on treatment for RA mostly to see whether what's been done is working. So far, so good.

This series of tests, evaluations, infusions, medications and visits with the doctor(s) should wind up by December 1, and the results so far indicate that I may -- stress 'may' -- be going into "remission with medication". In other words I will have to continue taking pretty high doses of immunosuppressants but that most symptoms of RA will be in abeyance for the duration.

The surprise yesterday was with my consulting pulmonologist and the tests leading up to seeing her.  She wanted a six minute walk and a pulmonary function test to compare with previous tests I'd had in April and July of this year. I did the walk with very little strain at all. The only real issue was high-ish blood pressure, but the technician said it was actually "not that bad."

I dreaded the PFT (pulmonary function test). I call it "torture." I'm sure it's nothing compared to what the various targeted prisoners in our various foreign and domestic gulags face on a daily basis, not even close, but it's definitely uncomfortable for someone with pre-existing breathing difficulty.

So there I am in The Booth of Doom chatting with the technician who says she's been doing this for 40 years and yadda and yadda, and she starts the tests, and... gee, it seems much easier on my end. So we chat some more and she points out that the test equipment as well as the Booth itself are somewhat different between hospitals. Yesterday I was at UNM Main Hospital in Albuquerque whereas the other tests were done at Presbyterian's Kaseman Hospital.

We go through the rest of the series of breathing tests and I tell her this time it seemed to go much easier for me. She prints out the results that I'm to hand-carry to the consulting physician, and as it happens, I have the previous results with me so I compared and contrasted over lunch. No, I don't know how to read the print out medically, but I could compare numbers line by line, and it was surprising to see that some of the lowest numbers in the past were now significantly higher.

When I saw the doctor that afternoon, she said that as far as she could tell, my results were mostly either within normal range or nearly so. Which was a great improvement over previous tests. The only worrisome number was lung capacity which is still low -- but not as low -- and she said that was due to scarring that had already taken place from RA, scarring that couldn't be reversed. However, it wasn't getting worse, and there was a slight improvement in capacity over time, which she said was due to medication preventing further progress of the lung damage.

I told her I no longer use Albuterol inhaler, don't use Spiriva, don't use oxygen, and haven't done pulmonary rehab. She said the improvement is therefore due to the effectiveness of the medications I'm taking  and that it may be possible to reduce the high doses I've been on slowly over time, but that I will have to be monitored fairly often to make sure there's no relapse.

Finally, she asked if I'd been diagnosed with COPD. I said yes, before the RA diagnosis. She said, "If you have COPD, it's very mild. In fact, you may not have it at all."

Oh. My.

I told her I felt like the treatments since May have been nothing short of miraculous.

I have another Rituxan infusion (the 4th) next week, then to the eye doctor and my primary rheumatologist the following week. Whew.

We'll see.

Meanwhile, busy-busy-busy with more and more daily activities including boosting Ms Ché's performing and academic career. Here she is with a couple of other indigenous women performing "Stop! In the name of Love" at the  Indigenous Liberal Studies talent show the other day.

Stop! In the name of Love

Yes, I know, the lighting is bad, it's fuzzy as heck, and they're all wearing one dress. Of course. But oh my such hooting and hollering from the audience. Fun!

And before you wonder how 'indigenous' the choice of music was, all three performers are indigenous women, and therefore the performance is by definition indigenous. At this particular art school, the question gets raised periodically -- "What is Indigenous Art?" The answer was provided long by former instructor Fritz Scholder

Disconnected

Welp, our phone line (landline) and internet went out on Saturday. There was no fix for it until Monday at the earliest, but we were scheduled to be in Santa Fe for the IAIA Open House, so the soonest we could get the situation resolved would be Tuesday. Harumph.

Cell phones still worked and connected to the internet – but barely. It’s always catch as catch can with them anyway. Ms. Ché was pretty put out though because not only did we have no internet at home but none of her laptops would connect to the internet anywhere else, and she had schoolwork to turn in, all of it on her laptops. Something had gone truly haywire somewhere.

I checked my machine on other networks, and sure enough, it didn’t connect either, at least not till Monday when I was able to get a connection on IAIA’s network, but I only had a few minutes to do some banking and check one or two sites before I had to shut down for the duration of the open house and building dedication (perhaps the subject of another post.)

My, we discovered how dependent we have become on the World Wide Web. We literally couldn’t do anything online, which meant schoolwork wasn’t turned in on time, we weren’t able to pay bills and check balances, we were bereft of moment-to-moment news (I’d call that a blessing!), no emails to sift through (another blessing?) and I couldn’t post anything new or respond to comments in this corner of Blogtopia (h/t Skippy).

So. The phone guy came yesterday, same guy whose been out before when static built up on the lines (he said it was due to bad fuses that were part of a Qwest purchase many years ago, but anyway… we still have a Qwest router for criminy sakes!) and he jiggled this and that in the phone box on the back of the house and as he did, he kept looking down the road where a “new” (old) mobile home has been emplaced on a vacant piece of land, and where trenches have been dug to connect said MH to various services like water and power and so forth.

I told him that I saw a plumber out there trenching on Saturday. He said he’d seen the trenches when he’d come over to our place, and one was really near the Century Link (formerly Qwest) box on the street. Hmm. He said if they cut the phone line it would cost them about $3000 to fix it because they’d have to get a crew out and splice the cable and on and on and on. He would go check presently.

Sure enough. When the phone guy came back he said they’d cut the line. He called the repair crew and he said they’d be over soon. Sigh. I asked him how long it would take to fix; he said not much longer. Once the crew was there, they should be able to take care of it in an hour or so. I would know it was done when things started working again.

And that’s what happened. It took longer than an hour, but the line was repaired and we have (landline) phone and DSL service again. (DSL?! OMG, they still have that?! Whoa!)

Most people out here don’t have landline phones (and have to stand outside in the snow and cold to make or receive cell phone calls!) and have satellite or cable internet, or rely on their smart (sic) phones.

One makes do.

As for the folks who cut the line, I don’t know… They were suppose to call 811 before they dug and they didn’t. Bad ju-ju.

Ms. Ché was able to get her laptops checked and adjusted at the IAIA IT center yesterday and they now connect to the networks at home and school and so on. 

Years ago we might have panicked if something like this had happened. Now? Oh well!

(Today is my third Rituxan infusion. We'll see how that goes... should be interesting.)

The Bill

Yesterday I got a more comprehensive bill for Rituxan infusion treatment that makes somewhat more sense than the previous summaries and payment demands.

Yes, it is criminally expensive treatment, far more expensive than I was told it would be, more than $46,000 vs $4,600, but what's billed and what's paid are completely different things, and as far as I can tell, the $46,000+ figure billed is nonsense, a place-holder at best, a figment of imagination mostly.

The more comprehensive bill (which says "This is not a bill" just to keep me on my toes) includes all the labwork and the preliminary medications (in case I had a reaction) and the various "pushes" to get the Rituxan into me. It includes the charges for all of this and how much the "Plan" paid for various things. Interestingly, the "Plan" paid nothing for most of it, and I will have no co-pay for it either.

Well, that's a relief, right?

But all these charges add up to get to the $46,000+ figure, and it looks to be little more than bill-padding. Something that has a long and inglorious history in the practice of medicine.

Where it gets interesting is the charge for Rituxan itself.

I thought that 5mg were being administered each time I had the infusion, but according to the bill ("This is not a bill") it was actually 50mg, and each time I had the infusion, the charge for Rituxan was $21,202.

For 50mg.

Whoo.

However. The "Plan" allowed $9,492 for Rituxan and paid $8,543, leaving me with a 10% co-pay for the drug each time, or $949, which adds up to $1,898.

And literally, that is all I am being billed for. Everything else is covered by the "Plan."

Well, who knew?

Obviously those who tried to find out for me didn't and couldn't.

We'll see what the charge actually ends up being when all is said and done. While Ms. Ché and I have too much income to qualify for Medicaid, our income is low enough (so I understand, but who knows) to qualify for financial assistance from the hospital, and I've applied for that. According to what I've been told, if the application is approved, the co-pay/cost sharing will be cut in half.

We'll see.

Nevertheless, I'm stunned at the cost for 100mg of Rituxan. It's outrageous, beyond belief truthfully, yet I'm sure there are plenty of drugs on the market which I don't know about that cost quite a bit more.

We know PhARMA has zero social conscience, but still, my question is why do "Plans" pay these outrageous amounts? How much mutual back scratching is built in to this system? Who benefits? Who ultimately pays?

And what can we do about it?

On Falling

Every time I visit the doctor -- lately several times a month -- I'm asked whether I've fallen in the last 90 days, and I've always said "No". Next time I will have to say "Yes," because the day before yesterday, I had a bad fall, and this morning, I can barely walk (though I think that's a consequence of an RA flare coming on as well as any lingering effects of the fall itself.)

It happened this way: Ms. Ché and I were talking the afternoon away in the house when I thunderstorm came up the way they've been doing almost every afternoon for weeks now. No big deal. Ms Ché got up to let a cat in and casually remarked, "Oh look, it's hailing!."

I said "Oh shit!" and got up. "The tomatoes!" We needed to cover them fast or they could be destroyed. One year, the hail pretty much destroyed everyone's tomatoes in the area. Our friend across the highway had a wonderful crop on the way; the hail not only destroyed her plants, it ruined all but a few of the tomatoes on the plants.

That year our plants were damaged but survived. The crop was minuscule, but at least there were a few.

This year's plants are still very young and quite fragile. They'e Cherokee Purple grown from seed, and we have way more plants than I thought would come through the various disasters of trying to grow tomatoes from seed at this altitude. Close to 100 plants at the moment are in various stages  of growth, and some have been transplanted to containers scattered around the place and are growing well.

Hail, though, could mean the end of many of them. So we raced to get as many as we could under cover. As we did, the hail came down stronger and stronger, and as I headed back to the house get more covering, I tripped on a wire -- actually a section of chicken wire laid on the ground to keep the cats from using a patch of lawn as a toilet.

BAM! I fell hard on the gravel -- the rough gravel we use for some pathways -- on my knees, and the pain was amazing. I thought I had broken both knees. Ms Ché saw me down and hollering in pain, while the hail storm intensified. Oh doG, what to do now?

I asked her if she could help me get up, but that didn't work, so I sat there in pain while the hail pelted the both of us and we became soaked to the skin. I couldn't get up on my own, and I was pretty much convinced that at least one knee was shot, if not broken. After sitting there for a while, I asked Ms. Ché to bring over a couple of milk crates that we use to transport things around the place. She did, and with some effort, I was able to hoist my bottom onto the crates, and once there, I was able to slowly and gingerly get myself into an upright position -- with the help of a walker that Ms Ché brought from the studio.

Now what? Could I walk? I didn't know. But I tried one foot in front of the other and sure  enough I was able to shuffle through the hail to the back door and make it up the steps and into the house. Whoo-hoo!

The pain in my knees was pretty bad, though, and slowly, I peeled out of my soaked duds. Both legs were pretty banged up from knee to ankle, the left one much more so than the right one. The left knee was quite bloody, and it looked like I'd done more than scrape the skin. I asked Ms Ché if she had any Bactine, and by golly she did. We sprayed it on the wounds.

And I sat for twenty minutes or so in my damp underwear, catching my breath and trying not to get overwrought.

Not a pretty picture.

Ms Ché was soaked, too, of course, but she tried to take it all in stride. I said, "Get into some dry things, I'll be all right." She went off to find something dry to put on while I continued to sit and contemplate my wounds. Apart from the scrapes and what looked like a broad puncture from a piece of gravel, it didn't look too bad, and because I could still bend my knees -- carefully -- I figured nothing was broken. I got up and...walked... ha ha... to the bedroom to find some dry clothes, and Ms Ché and I chatted about what had happened as she re-dressed in dry things. Well, you know, it was just one of those things.

She was worried that I shouldn't be walking, but I said I better figure out how lame I was, and see if we could deal with the wounds as best we could. Some Neosporin and bandages should be enough.

So over the next hour or so, we sorted out our various conditions. Ms Ché wasn't injured in the incident, but she's dealing with leg and foot issues of her own thanks to diabetes and an outbreak of psoriasis that makes her have difficulty with her own mobility. The stress of this incident didn't help at all, but she's developed some remarkable strategies to get and keep going no matter what.

I'm not nearly as good at it, but nevertheless, I didn't want to make too much of falling, but I wanted to make the best of it, no matter.

After an hour or so, I was pretty well bandaged up and recovered enough to go out and check the tomatoes. The hail had stopped and it was barely raining.

We only got the plants in the side yard covered. Those on the north side of the house were on their own.

I noted there was a bit of damage here and there, but nothing too serious. It looked like most of the plants would pull through just fine. Whew!

And I could walk. Pain was still pretty bad, but I could walk and get myself up and down steps, so that was good.

By bedtime I was afraid I wouldn't be able to sleep because of the pain. I'd taken a couple of Aleve, though, and the pain was fading. I slept fine. Got up the next morning and was nearly pain free. Wow.

Took it easy yesterday just the same.

But last night when I headed to bed, I felt more pain in my knees, and this morning, I woke up in severe pain -- both knees and ankles. I could barely walk at all. Oh.

I attribute most of it to a developing RA flare. It's been more than two weeks since the Rituxan infusion, and I've had no joint pain or flare. Doctor says, however, I most likely will continue to have flares for at least another month. I took a couple of Aleve which has moderated some of the pain, so I suspect that not all of what I'm feeling is RA related.

We'll see. Today we were planning an expedition to Santa Fe to explore the "Counterculture" exhibit at the history museum. I think we'll have to pass.

So it goes...

UPDATE: By yesterday afternoon, all of the pain was gone, and I could walk without difficulty, though both legs were still stiff and sore from the fall.

I emailed my rheumatologist about it asking whether the absence of pain after what seemed like the start of an RA flare was a sign that the Rituxan was starting to work. It's been a month since the first infusion and she's said that it generally takes six weeks to two months for Rituxan to have measurable effects on RA.

No word back yet.

UPDATE 2:

Got word from my rheumatatologist that it's possible for Rituxan to work within a month though it is rare. The situation as I reported it suggests that in fact the infusions may be working. I need to keep monitoring symptoms and response. And not fall down!

Two Weeks

Well.

It's been two weeks since my second infusion of Rituxan, and who'd a thunk? No pain. Well, almost no pain. Occasional twinges, yes. Momentary annoyances. Difficult mornings getting going. But nothing like the situation just a few weeks ago when I dreaded weekends because I would almost certainly start a flare on Friday which wouldn't fade away until the following Wednesday.

I would be lucky to have one or two "good days" a week. Yikes.

But now? I'm far from a cure -- in fact, they say there isn't one-- but it is possible I could go into remission (with medication), and if I do, I'll probably need infusions every six months for some time to come. But for now, I'm grateful to be almost completely pain free, even if it's only temporary.

During all this RA business -- been going on for two years now (longer when I think back to early symptoms) -- I've had no pain relief medication (except what I had on hand from previous sciatica episodes).

I thought it was odd that no matter how much pain I was in my doctors never prescribed pain medication of any kind. At one point, early on, I was self medicating with Aleve which initially provided some relief, then it didn't. I increased the dosage again and again, until I was up to 1600mg a day or maybe more, and still very little or no relief. Doctor said, "Whoa! Stop! That's too much!"

Well, what will you give me for pain relief? Eh?

The answer was steroids. Prednisone (which I tolerate pretty well; some people don't).  High doses tapering off to low doses. A maintenance dose until other medications kick in.

No specific pain medications at all.

The other medications might work for a time -- a few weeks or months -- but then not. I went through a half dozen or more meds trying this and that (I didn't keep track) to see what worked. Nothing did for long.

At one point, three-four months ago, I had tapered the prednisone to 7.5mg a day, the lowest dose I'd taken for over a year. That's when things started going haywire, and I was facing weekly flares. Doctor said increase prednisone dosage: I took up to 40mg a day with only partial effectiveness. This went on for months. The only relief offered was higher doses of prednisone, and when I pointed out even that wasn't working, it dawned on my rheumatologist that something else was called for at least as a bridge until the Rituxan could work.

And so, for the first time in years, I was prescribed an opioid (Tylenol 3) -- which I haven't had to take due to the apparent effectiveness of the second Rituxan infusion. If I do have a flare, however, and the Tylenol 3 doesn't work, doctor is prepared to prescribe (drum roll) Oxycontin.

She also prescribed a stronger version of prednisone in case of otherwise uncontrolled flares.

So far, however, I haven't had to take either one.

Whoo.

I know there is currently a hysteria over opioid addiction among lower class whites, largely due -- they say -- to overprescription of pain relievers among the Lower Orders. So there are any number of restrictions on doctor prescriptions, and I had to jump through all kinds of hoops to get what I got.

And I haven't taken it. I haven't even opened the package.

If the Rituxan works, I won't, either.

I will keep it on hand, however, just in case.

You know what? Chronic pain is a terrible and debilitating thing. I've experienced my share, and I know others who have had it much worse than me. Doctors face a serious problem in prescribing for pain relief -- except, apparently, in certain ruralish white enclaves where anything goes -- because of the opioid hysterics.

I assume that's why nothing was provided to me specifically for pain relief for years.

Of course, if you're among the High and the Mighty, there are no problems at all in getting what you need to control your pain -- or anything else.

None at all.

So...

We'll see how this goes.

So far, so good.

Rituxan In the Morning

Yesterday was another infusion day, so I spent the morning hooked up to an IV drip in a comfy bed at the Infusion Center reading "Cannery Row" by John Steinbeck which I had not done before despite my enthusiasm for Steinbeck and his dyspeptic vision of California's Central Coast and its society.

In that regard, I should mention that my (new found) cousin sent me a journal kept by her mother and our aunts that has an extended section  telling tales about their cross country rail expedition from Washington DC (where they were working at the WPA headquarters) to The Coast, where they did and saw everything. They saw all the sights from the Redwoods to San Francisco's Golden Gate and International Exposition at Treasure Island to Hollywood and Beverly Hills where they hob-nobbed with the movie stars and studio honchos. They went out to the beach and sunburned lobster red, they even went to Mexico, briefly, and saw a disgusting bull fight.

This was 1939. They passed through the Salinas Valley on their way to Los Angeles, but I can't imagine they noticed much. Certainly not the wretchedness and waves of travelers up from Mexico and still crossing the country from Oklahoma. What they reported and what they saw was the idealized tourist vision of California. There was always some truth to it, but it never told the whole story. Not by a long shot.

Steinbeck fills in some of the blanks, but he was hated for it in and around Salinas. His stories of his home place and the people there were stories you weren't supposed to tell. I grew up in other parts of California being socialized to that same notion. There are simply things you do not mention. If you're smart, you won't even look into them.

For example, I spent years studying the Gold Rush and the people who made their way to California between 1849 and about 1855. I reviewed all kinds of original documents kept at the California State Library and other places, and scoured the Gold Country for remaining clues to what was going on in those days.

The picture that emerged was nothing like the glorified and romantic image of the Gold Rush we were taught in school -- and I guess is still widely believed. For many who made the trek, it was horrible. Many died along the way or shortly after arrival. It cost a fortune to make the trip, and the chance of finding gold or even surviving more than a few months was slim to none.

And yet they kept coming. By the hundred thousands and ultimately by the millions they kept coming. My mother and her mother and stepfather among them. Most of my father's siblings -- but not himself -- came and settled in California, too.

Ms Ché and I left, though. She was born in California, and I lived there almost all my life, and the two of us could hardly wait to move to New Mexico.

Where I think we've never been happier -- health issues for both of us aside.

And so it goes.

Yes, there are plenty of challenges in front of us, and many memories left behind (along with a storage unit full of... stuff, including some of those memories...)

Perseverance, yes. But ultimately relaxation and freedom, too.

More to come.

An Updated Condition Report -- with Update to the Update

It''s now just short of a week since I had the first of four Rituxan infusions. As I reported, after the infusion I felt pretty darned good. No pain for the first time in weeks, months. Almost  complete freedom of movement. A lingering twinge now and then but the feeling of release from pain and restricted movement was magical.

It lasted three days.

Friday, I started noticing moderate joint pains and a dull throbbing pain in my lower back; in addition, there were signs of pain returning to my left hip, along with numbness in my left leg -- sciatica returning.

I took a Flexeril muscle relaxant as a precaution, and the pains seemed to diminish. But Saturday, they returned, focusing in different spots -- the way RA pain does, leading me to believe that I was having or trying to have another RA flare (for many weeks, weekend flares were routine). But then, almost magically, the pain of a flare seemed to disappear, and by late Saturday morning, I felt well enough to start mowing some of the out of control herbage out back.

Mistake. The pain came on again. I didn't take another Flexeril, but I did have to rest. I stayed up quite late Saturday night, monitoring my condition. When it seemed like the pain was not going to worsen, I went to bed.

When I got up Sunday morning, pains in my hips and shoulders were noticeable. Wrists and finger joints were painful as well. It was flare all right.

Later in the day, however, the pains diminished until they were almost gone. That never happened with previous flares. My neighbor Wes came over to help with the mowing, and though I didn't do much, I was able to take care of picking up some of the branches downed by the wind. No noticeable pain. Later in the day, however, when Ms Ché and I went for a supply run, I started experiencing sharp pain in my left shoulder, somewhat less pain in my right shoulder and wrist. Both knees were periodically painful as well.

So the flare isn't over. It's modified. Is that due to the Rituxan? I don't know. I'm supposed to talk to one of the nurses at the Rheumatology department tomorrow about what's been happening. On Thursday I sent an email to my rheumatologist describing my trip to the ER and what seemed to be miraculously pain free days since the Rituxan infusion.

Twice, nurses from rheumatology called me Friday to find out if I was OK. I said yes, but the flare really got going on Saturday.

So, we'll see where this latest episode goes. Right now, I'm feeling pain in my left shoulder, twinges elsewhere. But it's not nearly as bad as previous flares.

We'll see...

UPDATE: (Monday May 15, 2017)  Word came from my rheumatologist that my "good feeling" last week was not likely due to the Rituxan -- effects don't generally kick in for several months -- but was from the high dose of steroids included in the infusion.

I reported my current symptoms -- various joint pains -- and was told that's to be expected. For the time being anyway...

Sigh.

Rituxan

I was infused yesterday with Rituxan, an anti-cancer drug that's used in difficult cases of rheumatoid arthritis.

It went well enough I guess, despite all the warnings I was given both before and during the treatment. The worry is that patients will have  "a reaction" -- sounds like an allergic reaction, much as I had to the CT contrast dye the first time I had a CT scan decades ago. I felt the dye coursing through my blood stream and had an inside out feeling of itching, swelling, breathing and other difficulties. I passed out and stopped breathing. I don't know how close I got to the final elbow, but I remember waking up as CPR was beginning and a Benadryl injection was ordered. I was wheeled back to my hospital room where the nurse said I was lucky. They'd lost a patient the week before because they didn't get to him in time. Yes, well...

One patient in the infusion center did have a reaction, and there was no nurse available immediately, so things got a little scary for a time. The patient was in fact stabilized shortly though and did seem to recover fairly quickly. They increase the dosage of  Rituxan very slowly so that if you have a reaction, it will be easier to counteract.

The only thing I felt the whole time was a slight drowsiness and light-hadedness that seemed very similar to the way I feel whenever I take Benadryl for allergies (which is rarely anymore.)

The only thing is, the process takes several hours, in my case, from 9am till 2:30pm. You aren't completely a prisoner to your bed, but you feel like it sometimes. I had a book with me, "The History of American Archeology" -- rather a dreadful tome from the 1970s -- that kept me occupied. More or less.

I have to do it again in two weeks, and then twice again in six months, and then -- the hope is -- not again afterwards. The idea is that the RA will go into remission. I'm for that.

UPDATE: I feel much better today than I have in weeks, maybe months. It may just be coincidence, but it may be due to the Rituxan as well, If it is due to the Rituxan, yay.