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.

Last Day in Purgatory?

It’s 11 PM, and I just took an ambien to try to help myself sleep. Grabbing this computer was clearly not the most logical step toward that goal, but I wanted to quickly jot down some thoughts before tomorrow’s MRI and appointment–possibly the most important ones of the last 3+ years.

Tomorrow I find out if my first bout of chemo–2.5 grams of methotrexate administered during a 3-day hospital stay via central picc–was at all effective. I’ve been doubtful since the beginning, so I hope and hope and hope that I am totally wrong. After so many years of waiting, any change would be “comforting.” The lesion got worse, chemo’s not the solution; better, HURRAY, time to zap it some more. Just please no more waiting for an answer, no more questions, no more unknown.

Coping with my circumstances would be so much easier with a definitive diagnosis. As it stands, it’s very hard not to live each day a little more depressed than the last.