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.”

Hair No More!

A lot of you have already seen my short haircut on Facebook, but I wanted to post it on here, too, for those of you who aren’t regular FB users:

short hair

This photo was taken after a very long session of meticulous cutting, razoring, blow-drying, straightening, and setting. In other words, if it weren’t for my amazing hairdresser, my hair would not have turned out this well. Why? Because I have bad hair. Trust me when I say my hair is NOT meant to be short.

Still don’t believe me? Below is a photo of me au naturel when I woke up this morning:

bad hair

Yah…so you all get the Sideshow Bob reference now? If it were October, I could pretend that Halloween was my favorite holiday and dress up as Bob every single day. Or even better, I could get some small eggs and be a tree with a large bird nest at the top. Pretty sure the eggs would stay put all night.

I applied about half a bottle of men’s hair gel because I thought the hold might be stronger, but it was absolutely terrible. Literally, the worst hair product I’ve ever used. First, strong hold “flexible control” is a bunch of bull; even with a headband, the volume kept rising like a soufflĂ© on steroids and the strands kept popping out–boing!–like that gopher arcade game. Unfortunately, unlike in the game, I can’t exactly bash my head with a giant mallet, especially since slices of my brain are already all over the country, including the brain storage facility at Roosevelt Hospital. [Okay, it’s probably just a regular lab, but I imagine a giant room full of metal drawers that looks like a morgue, but instead of dead bodies, there are neatly filed blocks of brain stored in each compartment. When I call the lab to request more brain–which I’ve done about five times–the technician goes to the A’s and finds my tissue (which is stored in some jello-like substance) and cuts off a piece to be stained and sent to hospital X, which indubitably returns one more non-diagnostic analysis. Too much imagery? I hope no one’s currently suffering from tricuspid-valve regurgitation.]

Second, when I looked at the dried product up close, it looked as though I had dyed my hair salt-and-pepper because there were THAT many gel flakes. Seriously this stuff should be used for a shampoo commercial’s “before” photo of someone with dandruff/psoriasis/leprosy where the “after” shot of the model (my sister, Stephanie, obviously) showed the amazing results after only one use! [But I just learned that psoriasis and leprosy rarely coexist, so the commercial ought to be for one or the other. Fun fact of the night.]

Anyway, the point is I had my hair cut, which is a fine but very important distinction between “I cut my hair.” [My hairdresser asked me if I intended to “touch up” parts of it on my own. (She knows how I like to give myself impromptu, super-stylish trims that always turn out looking fab.)] If by some miracle my hair doesn’t fall out–which from what I understand is not a possibility, but hey, I have a special body–I’m gonna be knitting A LOT of hats.

Will post again tomorrow because I didn’t even mention what’s changed with my treatments and the timeline. (Are you in suspense?) The hair simply had to take precedence.

Authorization Granted

To my horror, the insurance authorization went through last Friday. The drug was first denied on Thursday–as expected–but it was successfully appealed by the end of the day Friday, as not-at-all expected. Man, I’ve been complaining about lack of healthcare efficiency for so long that this result is actually startling. And now I’m supposed to start this drug a week from today…?!

Could the echocardiogram cause a delay? Doubtful seeing as everything was reported as normal; so normal, in fact, that the writeup *actually* says that my tricuspid valve is “grossly normal.” Now as we all know, I’m no doctor, but…grossly normal? That the new cardiology lingo? And though I’m interpreting this adverb to mean extremely normal, is that word really necessary to insert? Like, her heart is SO EFFING NORMAL that we had to emphasize its normalcy by using a really emphatic word to stave off the potential of her thinking that when we say normal, we really mean special-normal or excellent-normal or better-than-most-normal? Because by definition the word normal when referring to a body part has varying degrees. Obviously.

But maybe I’m wrong and the interpretation is actually disgustingly normal since the next line reads: “There is trace tricuspid regurgitation.” Eww. That sounds nasty. Did you know your heart could regurgitate? Is this why I get such bad heartburn? Apparently it’s a thing, though, because it’s grossly normal. In my opinion, any heart-vom was caused by a reaction to the very uncomfortable probing and pushing of my entire left side. [Not a great test for females or dudes with man boobs.] Sonogram gel or not, the whole area felt bruised, so I bet my tricuspid wanted to express its distaste by throwing up a little. Gotta say, can’t really blame it.

I should be all set save for one potential wrench, the Lyme concern. If I’m doing this chemo, I damn well better be covered in case of “unexpected” flareups. And when I say covered, I mean COVERED–even if that means infusion needles coming out of my port and every cooperative vein like a giant porcupine. I’ve spoken with my infectious disease (and every other) doctor ad nauseum regarding this particular worry, so we’ve agreed to incorporate the IV Lyme drug into the treatment somehow. The ID doc thinks I should at least begin the 28-day course of Rocephin before getting the HiCY, but I’m not sure what that means in terms of ruining the efficacy of that (and maybe other?) antibiotic(s) after the chemo starts. I hope to learn a lot more during tomorrow’s appointment with oncology.

Update on Timing

I’ve tentatively scheduled my treatment to begin on Tuesday, June 23rd.

Not sure how accurate this date is because it all depends on insurance pre-authorization. Most likely the treatment will get rejected first since a) there’s no real diagnosis, and b) whichever diagnosis code is used has a different, standard treatment. The doctor will have to appeal, and it will be a minor miracle if all the red tape is worked through in less than three weeks.

In the meantime, I have to get a cardio exam and preliminary blood tests to ensure I don’t go into the treatment with a dysfunctional ticker or latent infections…and yes, Lyme disease is infectious, and yes, it’s been discussed with umpteen doctors, none of whom actually knows what he’s talking about since Lyme and lyme are such pernicious little spirochetes. [And therein lies the rub and explains why I’m rather hesitant to undergo this sort of treatment when the only tests to ever come back positive have been various forms of lyme. Yee-haw!] So, medical community, I am (very) reluctantly putting all my faith in you and your “false” positives!

I’ll put up some more countdown dates for the various upcoming appointments, but don’t be surprised by changes.

I’m also toying with the idea of having a hair cutting party for all the Dallasites who have always wanted to butcher someone’s hair without the ensuing friendship fallout. Since I’m not interested in finding chunks of hair on the pillow or in the shower, I’m going to cut my hair really short anyway–why not have a little fun with it? So if you’d be into cutting some crazy topiary hair patterns or think giving someone a mohawk would be fun, leave a comment below!

HiCY, Here I Come

First of all, this post is a toned-down version of the original because my father was not into some of my hilarious–albeit morbid–jokes. I mean, what is the meaning of life if not to make really distasteful jokes about death? I even had a place for nasara-byebye that fit perfectly, and when does that ever happen? Whatever, here’s me being temperate with the new and “improved” version:

As expected, my appointment with the PA was not very helpful, but I managed to get in with the doc about a week later, which was yesterday. I feel like I’m in a long-distance relationship with the guy: when I actually see him, he gives me plenty of time, and I come out of the appt content, more knowledgeable, and feeling better about life. Then the warm, fuzzy feelings fall away dramatically until I practically hate his guts by the next appt, which–to be fair–he warns me about after each visit. Guess I ought to give him credit for knowing his patients.

I’ve decided to do the HiCY, i.e. the worst chemo in existence, the nuclear bomb, the NFL of drugs, etc., etc. I’m sure it still doesn’t make sense to most of you why I would be taking the Immune Annihilator when no one suspects I have cancer. I’ll do my best to explain.

Despite the notion that chemo and cancer go together like yin and yang [going for a perfect balance analogy so don’t get upset if I just butchered an ancient Chinese symbol, geez, take it easy, LESION, DRUGS], chemo is also excellent for treating effed up autoimmune diseases. I just found the following term online, SADS, which stands for severe autoimmune disorders. [No, I’m obviously not pointing out the irony that the acronym is SAD.]

My BFF doctor told me he’s not sticking to “vasculitis” as the diagnosis anymore because the MRI and biopsy don’t point to any particular SAD, just that I must have a SAD (brain tissue, membrane, blood vessel, who really knows which one is SAD?). All I can say is he BEST be correct because if it turns out the lesion is actually some sort of lyme or infection, it’s gonna get ugly while they bombard me with tons and tons of antibiotics until my system reboots, comes back online, and starts gladiating.

The reason for the insane dose is that unlike with a tumor, for example, the drug needs to FULLY shut down my immune system, not just kill some bad cells. In order to achieve full-system shutdown, I need a really, really big dose of poison. We’re going for immune system level 0, as opposed to level 2 or something else that would compromise my system partially, but still not have the desired effect of eradicating the parts that have turned against me. I will have to be in the hospital for longer this time as the drug is administered over a four-day period. I’ll learn more when I meet with oncology, but I’m pretty sure they’ll want to discharge me ASAP since the best place to get an infection is in the hospital.

Obviously, I am less than thrilled with this whole idea; in fact, I flat out hate it passionately. But the truth is I’ve been less than half-living for 3.5 years, and I have to…you know what I’m going to say…GO BIG OR GO HOME!!

To end on a positive note, I have no intention of allowing anything too bad to happen to me. After all, I’m a hardCORPS (Peace Corps joke), tough BI^CH who has a LOT of social and political goals to achieve, the first one being the de-stigmitazation of chemo head, i.e. cueball head (although mine is most definitely not perfectly round and will look even cooler because of the giant shiv scar on my skull from my time in the pen otherwise known as Roosevelt hospital, but really who could tell the difference). I’ve already bought the requisite SPF and have an idea for an ad campaign: “Got dandruff? Try HiCy!”

In summary, I’m going into this treatment with three teams at the ready–neurology, oncology, and infectious disease–a main doc from Hopkins who’s dealt with many, many CNS patients; and several antivirals and antibiotics waiting for deployment. It won’t be fun, but I will survive! Now I will definitely need some more positive visualization, so maybe if you could join in and point yours at me, it will work like Captain Planet!

Methotrexate, Fail

Today was my big, post-chemo MRI. The lesion hasn’t changed. How unexpected!

[A little background since I haven’t posted in awhile: I completed two doses of 5 gram-methotrexate IV treatments, one in March and the other in April. My system metabolized the drug so quickly that I got out of the hospital in record time, first after three days and then two. I didn’t feel any side effects other than increased fatigue and dry skin, and my blood levels didn’t drop below normal levels. I waited four weeks after round 2 and six weeks after round 3–today–to see if the treatments made any real difference.]

Don’t know what’s going to happen next. My treating doctor outsourced me to his PA for the first time, so I’ll be meeting her tomorrow, i.e. I probably won’t know anything until his majesty deigns to see me next.

Now trying to decide which scenario is the lesser evil: getting another biopsy that yields nothing or going for the worst form of chemo, HiCY (high-dose cytoxan), that changes nothing. Pretty sure I’d rather have my head cracked open again, but I don’t think that’s the popular answer among the docs.

Random funny part: my internist told me that my last two treatments were 100x stronger than your average oral methotrexate dosing for whatever auto-immune disease. One of the main diseases it treats (orally) is RA (rheumatoid arthritis). And guess what? My joints still hurt the whole time! ha ha haaa

Emotional state update: result strongly suspected, no surprises, no tears and/or cursing. My body just loved getting that chemo. Seems to me my immune system is darn healthy!

Annoyance/anger/frustration update: being holed up in my room for a month after all 3 hospital stays–exhausted, with sun & fresh foods forbidden, having to stay home or wear a mask to go out–not ideal. Spending 6 months in treatment before getting no answer as to whether chemo works or not? Particularly unideal.

Positive-thinking update: as of about two days ago, I decided to force myself to be more positive and think healing thoughts while engaging in productive visualization exercises that will cure me. Since I’m not quite sure what’s lurking inside the Chairman, I will imagine many worms shriveling to their deaths. Or maybe ticks. Worrmticula returns (to die)!

Radiology versus Neurology

As I suspected, the radiology report confirms that there are “no significant changes” in my MRI. After messaging my neuro’s staff about this update, I was told that the doctor still disagrees–apparently he’s communicated as much to the radiology department.

Of course, now there’s the issue of trust. If the report changes will it be real (i.e. the radiologist didn’t spend enough time reviewing it the first time) or stretched, fabricated, sorta-kinda-false (to appease the neurologist)? In truth it doesn’t matter because at this point I won’t believe it regardless.

I’m supposed to start with new treatments in the coming weeks, so hopefully I’ll get better results out of round two: 5 grams of IV methotrexate, wait 4 weeks, 5 more grams, wait 6 weeks, new scan. I don’t know whether doubling the medicine will give me typical chemo side effects since 2.5 grams, which is still considered high-dose, did not. Too many variables involved to start predicting again. “I don’t know” is my new mantra.