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)!