jessicalum.com/blog

[I've decided to post cancer updates on this blog too, in addition to my Facebook notes. It seems a little more permanent here, somehow. Actions on Facebook can be so forgettable.]

Last month was hellish.

I was like an old lady with a broken hip. The radiation I got to protect my iliac crest from fracturing (the tumor was eating it up) made the soft tissue around my hip socket swell up or something. I could not walk or straighten my leg out. This made sleeping impossible for a night, and then I was promptly put on intense pain pills–and liquid–after several visits to the ER and doctor. I can’t drink anymore, but my shot glass came in handy. Liquid morphine tastes disgusting.

I’m able to walk normally now. Though I can’t run. It…makes my butt hurt. I have cancer there too…TMI?

Chemo was no fun, and apparently it didn’t work. Not only did my tumors continue to grow, I got all the possible side effects, except for the nasty skin condition it usually comes with (thankfully). I turned yellow, I felt fatigued all the time (those of you who visited, you know I was in another dimension or something…), I barfed a lot and had no appetite. My body was rendered incapable of healing itself, and I got endless nosebleeds. Horrid. More trips to the ER. Also, my hair started turning color at the roots…showing no sign of turning back to the normal color.

I figure that I’ll either look like Storm from X-men or if the hair loss continues, the Crypt Keeper. Though some comfortingly suggest I’ll pull it off like Natalie Portman in V for Vendetta. Thanks, but she’s got better bone structure than me. And healthier bone marrow, most likely.

On a more serious note, I have a very very aggressive cancer. It’s also very advanced.

Good for it, very bad for me. But hey, if I die, I’m taking the cancer out with me too.

Even more seriously, though, I have to admit that it’s extremely difficult for me to come to terms with what I have. I joke about it, or more commonly avoid talking about it, mostly because I don’t want to consider the fact that this might/will kill me. I accept that fact, but I don’t want the knowledge to haunt me constantly.

A lot of people have been treating me like I’m on my deathbed. Asking me how I’m doing in a really pitiful tone. Offering help when none is needed. Reminding me to think of the future–the far future, after death.

The latter is helpful, but I encourage all people to think of that. The former three…not so helpful. They only serve to remind me that I’m dying. I need no reminding. Especially when I’m feeling so good now compared to last month. But thanks for the concern.

I do not want to spend my dying days burdened by the fact that they are my dying days.

Anyways, I’m trying to prolong those days as much as possible. Since the chemo apparently didn’t work, I’m going to participate in a clinical trial at UCSF: radioactive iodine-MIBG treatment.

Basically, my tumors like MIBG (not sure how to explain what that is), and they absorb it like crazy. The treatment I’m receiving binds MIBG to radioactive iodine, so it tricks the tumors into absorbing both. The tumors will hopefully shrink and die from the radiation.

My doctor, Dr. Fitzgerald (who won a bunch of “Best Doctor of America” awards) says that the goal is remission (but as my disease is really advanced, that’s a very ambitious goal), but the hope is that the tumors will shrink and cause fewer symptoms and problems. Like killing me.

There’s a pretty big chance that this treatment won’t work, but a decent chance that it will. A better chance than chemo will work. I have to be treated with a lower-than-usual dose because my bone marrow has tumor activity, and it can’t withstand so much radiation if it can’t be replaced after the treatment. Complicated situation.

The treatment itself will take place in the middle of May. I’ll be in an isolation room, lead-lined to protect other people. I’ll be there for a week. It sounds like a good place to go insane…There’s only a TV, and everything I bring in must be thrown away before I leave. Radiation contamination, etc. So that means I probably can’t bring in a computer (no internet access, anyways), no PS3, no journal, etc. I can bring in books, but they have to be thrown away afterwards. I hate throwing books away.

Anyways, until then, I’m just (bored) at home, relaxing and trying to catch up on episodes of Lost while drinking Dharma Initiative Beer (really coke/root beer) from Tran Shawn.

I wonder sometimes if it is better to censor my diary.  I don’t actually keep a solid, tangible diary/journal anymore.  My handwriting is atrocious, and thanks to my MacBook Pro, I’ve pretty much lost the ability to hand write altogether.

Memories heal themselves.  The mind seems to have a biological response to painful memories, regrets, etc, so these things just fade into the past.  But…the diary, no matter how you spin it, usually bears much truth.

Sure, it’s probably prudent to not paste myself all over the Internet, bearing all to whomever happens upon my site.  But on a personal, private level…I wonder that diaries, even writing and recording, is unnatural.

Well, perhaps what is unnatural is the indiscriminate recording of everything and everyone.  What is natural is filtering this information through language and carefully recording what one wants to remember.

And so, here it goes.  A brighter version, less extreme window into my life.

Not that it’s terribly interesting or anything…