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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!

The Aftermath: Sucker Punches and Other Side Effects

I’ve been out of the joint for almost a week and am enjoying my freedom! Translation: I’m lying in bed without an awkward IV pole to drag around and drugging myself on my own terms. The joys of liberation are relative.

The past few days have been unpredictable symptom-wise. I’ve experienced the usual suspects—nausea, upset stomach, exhaustion, breathlessness, weakness, body aches—but also some very unexpected reactions. Last Tuesday, for example, I woke up with extreme lower back pain, as though I’d been boxing with Tyson and he sucker-punched me in both kidneys multiple times.

Mo, my attack cat--look at that precious gleam in his eyes!

Mo, my attack cat—look at that precious gleam in his eyes!

(At first I wrote Ali, but then I decided to change to the ear-biting rapist because in my uneducated opinion Tyson would be way more likely to throw illegal kidney punches. And to further my digression, I love Ali. I named my African bush cat Mo in his honor after Mo punched me in the face the first night I had him, but I thought it best never to tell my Burkinabé friends his full name in case they were insulted. After all, it would be pretty disrespectful to name a cat Jesus. Then again, I don’t know any famous athletes or really anyone named Jesus other than the main man, Jesús Marías and other Spanish derivations aside. One to ponder.)

Back to sucker punches: the pain was so sharp that I convinced myself I was having acute renal failure and was already chilling on Death’s porch with a glass of sweet tea and some biscuits. The clinic wasn’t yet open, so I called the emergency number, which resulted in a short conversation with the on-call doctor whom I also managed to convince that I was 75% dead. [This influential quality has been very useful at times; not in this particular situation.] He told me either to go to the ER or wait the 20 or 30 minutes for the clinic to open. Obviously, I would have chosen death over another hospital trip, so I opted for the latter.

When the clinic opened, I left an urgent message for the PA (physician’s assistant) to get back to me ASAP. Of course, he wasn’t there that day, so I decided once again that death was preferable to clinic visits two days in a row. [I had pre-scheduled appointments with my PA for Wednesday.] At this point, my parents had rubbed Icy Hot all over my back and I was wearing Thermacare wraps. It was quite odd that my kidneys were recovering so quickly from muscular treatments. It produced a calming effect. Once I learned of the PA’s absence, I started backpedaling hard—“I think the kidneys are lower anyway” and “This level of joint and neck pain seems totally normal”—until I finally un-convinced the clinician that I needed to check in with her. She repeated several times with concern that I could go in whenever, and I told her the next day would be just fine. Man, these people are so dramatic.

The next day, I asked all pertinent questions and found out my symptoms were pretty much normal. The PA lectured me about the importance of seeing other PA’s when necessary. I told him no one else understood me. He responded that he didn’t think anyone understood me at all. My parents concurred. I felt much better.

Other than that delightful experience, I haven’t feared for my life. I feel pretty lousy in a to-be-expected way, particularly since my latest blood test showed that my white blood cells were down to 0.1. They could very well be at 0 by tomorrow.

I have a lot more to write, but I’m getting really tired. Plus, shorter posts are better for attention spans these days. So until next time…get excited for #curlyhairproblems…TBC

Treatment Plan

Alrighty, now that it’s no longer Saturday night, we can get into the way less fun but also less frivolous content.

Surprise, I’ve already started my treatment! Not the chemo, just the antibiotics. I’ve finished Day 4 of IV Rocephin–a drug that can be administered at home through an infusion service–which is what we decided to use as my 4th “prophylactic” of sorts. I was having regular panic attacks regarding the could-be-lyme, so in my usual fashion, I browbeat the doctors into doing something about it.

rocephin ball

Rocephin ball for home infusion via my port

[One of the hardest parts of the last 3.5 years has been coordinating my own care; the level of self-advocacy necessary to get anything done is exhausting. It’s essentially a job in itself, and I don’t know how other sick people manage it plus their symptoms. (As much as I want to launch into a political discussion regarding healthcare, I don’t have the energy, so all I’ll say is the whole system is nuts.) Luckily, I’m no wallflower, so I’ve been extremely active with regards to making my opinions known. And known. And known again. In addition, my parents have been super, super supportive–Happy Father’s Day, Dad!–which is a HUGE advantage that I do not take for granted. I know not all parents would be happy to house their adult-child for so long, and our managing for this many years without killing each other is a testament to their love and patience. (I’m not taking credit because I explode really easily. It’s the drugs like Keppra. Or the lesion. Or the now black-boxed malaria medicine I was on for over two years. Or all of the above. Regardless, my anger issues are definitely not my fault since nothing is ever my fault anymore. I have a brain disease.) The rest of my family and friends have made the whole experience so much more tolerable, too, and I don’t take that for granted either. I APPRECIATE YOU!]

Back to the doctors, in this particular moment of hysteria, I emailed, called, and messaged so many times that I got Infectious Disease and Oncology talking to and coordinating with each other (gasp!), and they agreed that starting the antibiotic a week before the chemo would a) deal with any lyme concerns, and b) calm me the f*** down and get me off their backs. I’m just speculating about part b, but it did the trick: dealing with the situation in advance as opposed to waiting for some infection to crop up was an immense relief. Then the appointment with Oncology was totally relaxed and no-big-deal, which made me become even more zen. I guess the whole thing sounds a lot worse coming from a doctor who doesn’t administer chemo–and who either doesn’t really know how it is or who might exaggerate some aspects to prepare you for the worst case–than from the people who do it daily. The nurse even told me my immune system would likely bounce back in the first 4- to 6-weeks, and though my immunity would get very low, it wouldn’t reach 0! (Let’s hope she’s right.) So for anyone who was as nervous as I was, I think the takeaway is the HiCy won’t be fun, but the experience should be much less scary than initially thought, especially with my preventive lyme-murdering drug taking care of any herxing before I admit to the hospital (hopefully).

In order to get in a full week of Rocephin, I moved the hospitalization back two days to this Thursday, 6/25 (Happy Early Birthday, Pam!). The nurse told me I have to be given six hours worth of hydration before starting the chemo–Cytoxan badly affects the bladder–so I’ll probably be inpatient until Monday, unless I get evicted from the ward for bad behavior, which would never happen because I’m so perfectly well-behaved in hospitals always, never a scowl or a barked reply. (Despite the hospital being a new, fancy, and high-tech facility, a hospital is a hospital is a hospital, and patients are not allowed to drug themselves for liability reasons. This does not create a great nurse-patient relationship, especially when the patient has problems relinquishing control and practically gives herself seizures when her drugs are not with her. Of course, I would never be one of those patients who gets hostile and combative when her drugs are not delivered on time, particularly the seizure meds, but I’m sure someone out there maybe could be.)

After the chemo is given over the course of four days, I’ll go home and continue with the Rocephin for the remainder of the 28 days (assumption being we’re dealing with neuro lyme just in case). Then, who knows? I’m not yet overly apprehensive about the side effects–mostly because my body reacted so strangely to the first chemo drug, and by strangely, I mean didn’t react at all–but that very well may change once I’m in the hospital.

For the time being, as Mumsy always says, “One day at a time.”