The ABC Cancer Diaries

A young, American-Born-Chinese woman living with metastatic breast cancer

Human Guinea Pig June 22, 2008

Filed under: Uncategorized — wenren @ 9:11 pm

I’m FAMOUS!

Click

Here!!!

Oh the glamorous life! That link up above is the clinical trial I’m currently on. I’m not really famous, but a clinical trial (like being famous) is actually much more mundane than it sounds and filled with lots of unwanted attention. Instead of battling annoying, meddling papparazzi, I have many, many tests and doctor visits. And they all literally want a piece of me.

My new treatment isn’t approved yet by the FDA, but everyone’s got high hopes for it (including me, of course.) It’s so cutting edge that it doesn’t even have a fancy Latin root based name yet. It’s main identification is merely a string of numbers preceded by the initials of the sponsoring pharmaceutical company. (ie, BM-3498756234)

But I was fortunate enough to qualify to receive the new drug because of my genetic disposition (BRAC 2 positive) and tumor size (not too small, yet not too big). And I had also failed a primary chemotherapy (Xeloda). The one time in my life failing is actually a good thing!

So I’ve officially entered into a phase II clinical trial or put more simply: I’m a human guinea pig!

Wynne Guinea Pig

(OOOOOoooooooooh, how cute!)

well sort of…

Before drugs receive FDA approval, they needed to be tested for efficacy and safety. So the drug I’m on now has more or less been proven safe enough, and now we’re trying to see how effective it is.

So what is a day in the life of being a clinical trial participant? Well, no cute ferris wheel to jog in circles on (though I do try to run around the park a couple times a week). Mainly I’m under intense scrutiny by doctors, and I give lots of my blood. Specifically this trial requires me to visit the docs every week for the first eight weeks. Yup, that’s right every week I hike uptown to see the doctor, give my blood and urine (Yes, I won’t spare you any details.). Then every two months I get a CAT scan.

On day 28, I also had to spend the ENTIRE day at the treatment center getting blood drawn every two hours of so. At first I thought I would be able to leave in between, but as I sit here* now with a catheter in my right arm, I know that this is not the case. Because they need to make sure my blood is drawn exactly two hours apart, I cannot leave the premises. It’s a minor inconvenience, but still quite frustrating. So my day today at the treatment center was as follows:

  • 9:10 AM Arrive at center. Check it at desk
  • 9:29 AM Wait. (I knit while I wait.)
  • 10:10 AM Wait some more. (more knitting.)
  • 10:30 AM Get brought into a room. Give urine, get vital signs taken, then wait (more knitting).
  • 10:45 AM Doctor comes in, physical exam
  • 11:00 AM Begin blood drawing. Get stuck with needle, blood is drawn. Take meds.
  • 11:10 AM Take some more blood.
  • 11:15-12:00 PM Wait, knit. Finish hat for friend’s baby shower. Watch bad cable tv. Coordinate lunch plans. Wait for husband to come and bring sushi for lunch!
  • 12:20-12:55 PM Eat lunch with husband and friend.
  • 1:00 PM Blood is drawn. Only two more times left! (3 pm and 5 pm)
  • 1:15-5:00 PM Too tired, frustrated and annoyed to bother writing anymore (or really do anything for that matter). Just vegged on really bad cable tv.
  • 5:30 pm Finally went home.

*When this entry was originally written, I was stuck at the treatment center all day. I ended up finishing the entry at a later point.

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The Waiting Game June 3, 2008

Filed under: Uncategorized — wenren @ 1:54 am

Having stage IV breast cancer has never directly inflicted any physical pain on me. I’ve been fortunate enough not to have ever experienced direct side effects from my cancer, well with exception of small tumors on my neck. The more invasive side effects come from my various treatments. (My last ones consisting of unsightly darkening and drying out of my hands and feet — this was from an oral chemotherapy, Xeloda). But the other toll that having cancer has taken on me is having to watch time pass me by.

There’s not a moment in my current life living with cancer when I’m not waiting. The standard image of waiting is at the doctor’s office, or waiting in those silly oversized gowns for the doctor to come in. Most people experience this when they visit any doctor. But I find that I also wait to wait. I anticipate my appointments, (I can’t wait to wait!) and worry about making it back in time to teach. (I have to wait for my doctors, but students can’t and won’t wait for a teacher who’s late.)

I wait after I’m done with appointments to schedule the next appointment (where I can expect to wait some more). Sometimes there are mini waits within a longer, larger period of extended waiting. Now that I’m on a clinical trial, the doctors watch me like a hawk, so I have the general waiting to see the doctor which is mostly accomplished in the main waiting area. Before I see the doctor I usually need to have blood drawn (where I wait briefly). Then I go back to the regular waiting room to get called into a room. Once in the room, I wait some more. During my last visit before I could begin the post-waiting (to schedule my next appointment), I had to wait while the staff tried to locate a pair of tweezers to pull some eyebrow hairs for biomarkers (for research purposes).

All this waiting has equipped me with multiple strategies to deal with the long, empty periods of potentially wasted time. I try to grade while I’m waiting. Sometimes I knit while I wait. But doing other things never really removes the nervous distraction I feel when I’m waiting. I started to wonder how much time I spent waiting and began a log of the amount of time I spent waiting and going to and from doctor appointments, but it was hard to keep up because it made me too sad. I didn’t really want to know how much time had passed.

Ultimately, I don’t have a precise quantification of how much time I spend waiting, but I can predict that I’ll be waiting to wait some more.