Monday, November 15, 2010

The Valley of the Shadow of Death

When I succeeded in climbing Mt. Whitney while fighting fourth-stage cancer, I thought it was one of the HARDEST things I've ever done. It is really hard to keep going when your entire body is rebelling and wants to quit, which of course has its parallels to fighting cancer. Now, two-plus years after climbing Whitney, I say fighting leptomeningeal metastasis (LM) is the hardest thing I have EVER done in life (and if you know me personally, you know it's been an adventurous life).

I haven't been posting much because each injection into the Ommaya reservoir has left me feeling ill afterward, much like flu symptoms. I usually start feeling better the afternoon before my next injection --- typical for us cancer patients, huh?! Start to feel better just in time for the next go-round.

Since Ommaya reservoirs are used frequently for childhood leukemia, my nurses who help with the injections into my cerebrospinal fluid via the O-res are pediatric oncology nurses. Because they usually work with scared, crying children, they have the BEST personalities and senses of humor. So having explained that, it should come as no surprise to you to learn they have named my O-res "Mr. Puffy." And it's a very fitting name, as he puffs up when we inject him!

Scientifically, what we have now done is inject Mr. Puffy with 5 mg, then 10 mg, then 20 mg over weekly appointments. I got to skip last week because of the holiday, so we did the 20 mg as a "double dose" the week beforehand. I wonder if we will do the same again this week, given that Thanksgiving is next week.
(Where the heck did the year go? I do not have many memories of 2010 at all; my short-term memory has been hampered significantly by the oft-mentioned "chemo brain.")

After each injection, I tend to fall asleep when I arrive home and sleep several hours. I usually feel a little stiff when I awaken. I'm able to sleep that night despite the nap, and when I awaken the next day, the stiffness has become body aches/pains; I'm nauseated; and I tend to have a headache. I feel like I'm "coming down with something" or fighting a bug.

And to me, that makes sense. For we *know* the drug we are injecting seeks out the cancer cells and parks on their receptors, which then flags the cell for my immune system. So of course my immune system should be turned on to fight the foreign body (the now-targeted cancer cell), which I would assume would make me feel like I'm fighting a bug or have a flu.

So the bottom line so far is that I feel like I have the flu for 6 out of 7 days every week. Beats the heck out of how bad the LM felt last April and May!


John B said...

Carol, did you section hike the AT in 2004? Stop by Walaysi-Yi at Neel Gap, Georgia? If so, please email me:

I've truly enjoyed reading your journal.

John B

Hiking for Hope said...

Sorry, not Carol. :( Another hiking for hope? I'm based in So Cal, but am known to visit the Southeast. I have been on parts of the AT, but not in 2004.

I also know of a lady in WA who did the John Muir Trail (CA one, not TN one) as "Hike for Hope" in memory of her beloved son. If I run across Carol (or one of my AT friends do), I'll pass the word along. Happy trails to you!