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The Slimy F***er is FINALLY on the Lam!

And she’s back!

I know—promises, promises. I feel it’s time to start blogging again before you all think I’m way too flaky to even try to follow, which honestly I am these days, but at least not tonight!

Point 1: HOLY CRAP

Point 2: HOLY CRAP

Point 3: Pinch me?!

I spent the last few minutes dancing to Stayin Alive, a private celebration with just my mohawk and the battle-worn Chairman and me. That song is almost 5 minutes long, so you can imagine how exhausted I am. No matter, it was definitely necessary and totally worth it.

I’ve been avoiding excessive fatigue for months since I can legally drive again (state law says it’s a go after 6 mos seizure-free), but as you shall soon learn, it don’t matter no more because I’m about to be thrown into a writhing pit of, well, writhing/jerking/twitching motions—basically a week-long EEG that monitors brain activity and tries to provoke seizures at all times. My meds will be cut off suddenly, and I’ll probably be asked to do things that will be more likely to cause migraines than seizures (things like hyperventilating, staying up too late, overusing the noggin), so who knows what sort of fun side effects will occur! More than anything, I’m worried about having my Klonopin cut off sharply because it’s an addictive medication that can DEFINITELY cause detox symptoms; my neuro compared it to alcohol (and also said there’s some sort of constant-seizure syndrome that the epilepsy docs will want to avoid that comes from over-withdrawal of that benzodiazepine drug class, which also happens to include my favorite seizure killer, Ativan…awesome!).

As a point of reference, when I went from 1.5 mg to 1 mg a few years back—slowly, tapering for at least a month—I had seizures galore. I’ve just started going down again, but seeing that my shrink suggested taper increments of .125 mg, I’m a bit scared that I won’t make it down very far in time for the fireworks. [No set date yet, but I get the impression they want to start ASAP while the lesion is still “moving”—an interesting word choice that of course calls to mind dire Peace Corps-like intestinal agony.] I guess that means I’ll be seizing, crying, hallucinating, sweating, screaming for Morphine, blasting Amy Winehouse, and God knows what else; in other words, going through legal-drug rehab. Should be fun for the techs!

My neuro also works with the children’s hospital, so he offered clowns and companion dogs to help me during the monitoring process. Not so keen on the clowns, but HELLO, of course I want a therapy dog! I think he was joking, but I’m going to make it crystal clear that I get VERY needy when I have seizures, so they better have a team of mother-like nurses on call if they don’t get me my damn anxiety dog! [Side note: he’s ready to prescribe me such a dog for real life, but there’s the issue of the &^%$^& cats. My calling the dog a nurse instead of a pet hasn’t made much difference on the home front.]

It’s gotten way too late, so I’m going to turn over the appointment details to my dad’s email update to the family. I made a few comments and revisions in brackets, but if you’re displeased with the overall lack of morbid humor, take it up with Papa Joe:

 

Some good news finally on the medical front!

Sara had an MRI last Saturday and this afternoon we met to review the results with [sung in Arrested Development tone: “doctor F!”], the neurologist at UT Southwestern who prescribed her intensive chemo last June. Her last MRI was in September and it showed virtually no change from the pre-chemo MRI and we thought the chemo had not worked at all. However, this time there was a very noticeable improvement and reduction of her brain lesion, and the doctor says that it is possible the improvement will continue over the next months (her next MRI will be in April). As a result he does not want her to do any more chemo treatment right now. [HURRAYYYYYY!!!!!] Here is the side by side:

MY BRAIN

The image on the left is from Saturday, the image on the right is from [May 2015], pre-[HiCy]. The bright white area is the brain lesion, representing swelling, inflammation, scar tissue, and/or edema. You can see that the white area is considerably smaller now. Also, the two dark spots in the middle (these are major arteries feeding the brain) are now visible on the left, whereas the right dark spot on the right scan was completely covered up by the lesion a year ago. Also note the line going down the middle of the brain separating the two lobes. In the left picture it is straight as it should be, in the right picture you can see how the lesion was pushing over against the other lobe as a result of all of the inflammation.

This is just one set of pictures. We also viewed what is called the flair MRI, showing places where there are small hemorrhages in the brain. Those also are much reduced this time compared with past scans. This is the first time in four years that the scan has changed at all, and shows that the [HiCy] chemo had a significant beneficial effect on Sara’s condition.

Dr. [F] says that the reaction to the chemo proves 100% that Sara’s condition is not infectious, that it is auto-immune, that the target of the immune system is most likely the walls of the brain’s blood vessels, and that whatever the trigger was that started all of this is long gone (be it some kind of infection or something else). [Although there’s really no way to find out, the trigger was obviously brain schisto. Obviously. Actual autoimmune diagnosis is CNS Vasculitis (98% certainty, so almost as high as 100% autoimmune certainty), but I still think I also have/had Lyme in other parts of my body. The blood results were positive EVERY SINGLE TIME. Don’t try to argue; you will lose.]

In terms of next steps, he recommended that Sara undergo an EMU (Epilepsy Monitoring Unit) treatment, in which she will be hospitalized for [+/-] five days hooked up to brain sensors and in which her meds will be reduced to determine how low she can go on them before she has a seizure. They will monitor her brain waves for seizure activity the whole time. Right now her meds are essentially the same that she had pre-chemo. This series of tests will help determine a new regime of meds, hopefully much lower doses than what she is currently taking, which presumably will make her feel better and allow her to be more active. She wants to undergo that as soon as possible [welllll, yes and no…see above], but I imagine it might take a few weeks to set it up and coordinate with all of the doctors.

We are all flabbergasted by this news, after no change for so long and no confirmed diagnosis of her condition, but I am so relieved and happy…[etc etc etc]…May the next MRI be even better!

 

And that’s all for now folks! THANK YOU FOR YOUR AMAZING, UNYIELDING, INTERMINABLE SUPPORT OVER THE LAST FOUR YEARS!!!!!! I know I’ve said and done some absurdly inappropriate things—actually according to second shrink, not really my fault because the frontal lobe is responsible for censorship and filters, and she said I’m doing pretty well given I haven’t [yet] gone streaking through downtown Dallas (a discussion we had right after 40 mins of my paranoid ramblings as to whether I should lock myself up in the nuttery now to prevent future “incidents” due to psychotic transformations caused by inflamed brain syndrome…to put you at ease, she said I needn’t worry)—so I’m especially grateful for your continued encouragement and love! I know I’ve been a pretty bad friend to most of you, so I intend to make it up somehow starting as soon as possible!!!

LOVE LOVE LOVE LOVE LOVE LOVE!!!!

And yes, I’ll do my best to continue with the updates on a more regular basis. Maybe I’ll write one mid-seizure, but only if I have a golden retriever with me!

Day 3: Saturday

Not being facetious, really great news: I haven’t vomited or seized once today (so far, knock on wood)! I’m pretty sure the seizures were caused by the first HiCy infusion being so late Thursday night/Friday morning–which resulted in basically no sleep–plus my not being allowed to drug myself here (i.e., drugs not always brought on time or not same strength I use at home) plus neither my lesion nor my sinuses taking kindly to the Cytoxan. The lesion hurting like crazy wasn’t bizarre, but exploding sinuses? The doctor told us yesterday that severe sinus pain was actually pretty common. Weird. [Last night I made sure to take care of those two issues by ordering preemptive Ativan and Benadryl, which I did again just now.]

I’m actually not really sure what caused the nausea. (I know it seems obvious, but I was okay for several hours after the first infusion and then all day today after the second one. Possibly had something to do with low levels of potassium or sodium? Our Peace Corps oral rehydration salts (ORS) had a lot of sugar and some salt, but I never learned personally what happened when sodium levels got too low…a good thing, I suspect. Regardless, I’m drinking Gatorade now.)

I have a wonderful nurse for the rest of the weekend day-shift who took charge yesterday and got me feeling much better. Today she made great on her promise to let me rest, so I was disturbed very little. Either there or no techs–people who take vitals every five seconds–on Saturdays & Sundays or she decided to take over their duties herself. She also managed to whip the pharmacy into shape so that my chemo can start at eight tonight, which would be a miracle. When I win the Publisher’s Clearinghouse Sweepstakes, I’m hiring her as my personal medical consultant, combatant, and coordinator.

[There were, however, some funny visits in the morning: a few neurologists and PTs who were worried about the seizures came by to check me out and seemed a bit confused by my overnight transformation–“Wait, so you can speak coherently? And you can walk on your own?” They seemed satisfied quickly enough when I was able to cobble together more than a few intelligible words. (Yesterday, I kept trying to tell my dad that I needed more Keppra, but I couldn’t get the words out, so I shouted things like “mo’ wepper” until he finally got it. So you see, part of the reason I hate not being able to control my drugs is that I hate allowing the seizures to crawl up to my brain and render me incomprehensible: I can see the word in my mind, but it won’t come out of my mouth correctly, no matter the level of concentration. It’s a pretty awful feeling.)]

In the meantime, I’m just waiting for infusion no. 3–hopefully it’ll go like the 2nd one because I do not ever want to relive the aftermath of the first one again. Since I’ve had no extracurricular medical activities today, I had a chance to snap a photo of the Dallas skyline from my window. Nice view, eh?

DowntownDallas.jpg

Fingers crossed for tonight–almost more than halfway through!!!

Day 2: Friday

If you sent me a message earlier and I didn’t respond, it’s because today was by far the worst day I’ve had in a hospital.

I seized three times, vomited about five (including once all over myself and my bed), and am now an official fall risk with yellow socks. I’m exhausted and my head has been exploding (some sort of sinus reaction) since the infusion last night.

I’ve requested an extra 500 mg of Keppra to bring the total to 4000 mg. Let’s hope tonight goes better–the nurse is running interference this time so I can actually sleep.

Random shoutout: hurray for Justice Kennedy! 🎉🎈🎊👍🏻💥✨