Saturday, May 2, 2009


Here's a somewhat jumbled list of avenues we're exploring. I say "jumbled" because the list is a mishmash of three things: (1) doctors we want to see, (2) places we want to take Mom, and (3) treatment options that might yield fruitful results. Because these things-- who, where, and what-- are all interrelated, separating them into neat categories is somewhat difficult to do.

What we've looked into thus far:

1. Fairfax Hospital: standard treatment with radiotherapy and chemotherapy. (Consultation with the radiotherapist, Dr. Tonnesen, on May 11.) This is our default path.

2. M.D. Anderson Cancer Center (Houston): possibly for standard treatment and/or clinical trials. Consultation on May 8; no doctor's name yet, but the appointment's been made. Mom and Dad will be flying down to Texas on the 7th, rejoining my aunt and my cousin at their house. The drive from my aunt's place in Conroe to downtown Houston is a little over 50 miles, or anywhere from 60 to 90 minutes, depending on traffic. The appointment's at 8AM. Mom will basically be seeing the docs and flying back to Virginia soon afterward; we haven't officially decided to ship her to Texas for the long haul.

3. Mary Crowley Research Center, affiliated with Baylor University, Dallas, TX: fat particle nanotech delivery system for tumor-suppressant gene. (Not possible at the moment, because Mom needs to go through the standard regimen first before she can enter the clinical trial.) We plan to contact-- and remain in touch with-- the docs who've developed the technique and are managing the trials.

4. Keck School of Medicine, USC, Dr. Florence Hofman: DMC treatment. (We still need to find experts who know about this drug. The chemotherapist who will likely be treating Mom at Fairfax Hospital, Dr. Meister, was unfamiliar with DMC.)

5. NIH/NCI (DC): consultation on May 6 with Dr. Harold Fine. Dr. Fine's name was given to us by Dr. Meister during that recent consult.

6. University of Washington School of Medicine: Avastin treatment. We're actually hoping to speak with Dr. Fine (mentioned just above) about Avastin, but we'll be in touch with U. Washington as well.

7. Johns Hopkins University: consultation with a certain Dr. Levy (no date fixed).

One thing we've discovered about clinical trials is that, because Mom hasn't even begun standard treatment yet (she's still in the post-surgical healing phase), she isn't eligible for most of them.

We've been discussing the pros and cons of leaving Mom here in northern Virginia, or having her sent out of state for treatment. The obvious bottom line is that Mom should go wherever the treatment is best, but this is complicated by at least two problems.

First, because of the aggressiveness of this sort of tumor, we have very little time in which to make what is literally a fateful decision about our primary course of action. Mom is supposed to start her therapeutic regime within about two or three weeks of debulking surgery, which means we have to rush through a process that, by all rights, should go slowly and deliberately. We probably won't know, even after multiple consultations with various docs at different institutions, whether we'll have picked the right place and the right treatment regimen for Mom.

Second, we're talking about a disease that is generally fatal within a year. As I mentioned previously, survival rates plunge dramatically when we pass the one-year mark. In some cases, patients decline and die within a matter of months even after initial debulking surgery and the start of the therapeutic regimen (see the comments to this post; they manage to be both discouraging and frightening). The high probability of an unhappy ending to all this means that we must seriously consider quality-of-life issues. With Mom out of state, she'll be away from friends and family, especially if "out of state" means "away from northern Virginia or Houston." Even if Mom is in Houston with our relatives, she'll be in a fairly foreign environment, adjusting to new household routines, facing long daily commutes to the medical center, etc. These factors have practical implications. How much of Mom's time should be spent commuting and away from home, if her time is short? Will such an arrangement make her happy?

I'm all for placing Mom wherever the absolute best treatment is available. But if this means that Mom will be out of state, then Dad is most likely going to be the one to accompany her, and I'll be at home, holding the fort. My brothers will also have to remain in Virginia because of their own commitments. We'll visit Mom as often as possible, but we can't pretend that we'll be able to fly down to, say, Texas every single day, all while holding jobs in Virginia. Dad, being retired, can accompany Mom, and I can help him handle paperwork from Virginia-- mortgage, assorted bills, etc. Such an arrangement would be awkward, but it'd also be workable. Or, we could do things differently: I could head down to Texas with Mom instead of Dad, leaving Dad to mind the house... but I can't imagine Dad tolerating that arrangement. He'd want to be by Mom's side.

As you see, we have a lot to consider, and little time in which to do justice to all the alternatives out there. Facing a loved one's aggressive cancer requires the family to think in terms of both immediate tactics and long-term, overarching strategy-- to be platoon leaders and generals, all rolled into a single package. If we stick with the martial metaphor, this also means being decisive, and making decisions with as much sang-froid as possible. Heaven forbid we should make the wrong choices in the coming days. So much rides on the immediate future.

Speaking of days: May 4 is Mom's birthday. She'll be 66.


1 comment:

Dale Conlan said...

To the Family,

I have a very good friend who had a cancerous brain tumor. After radiation etc., he has survived 10 years thus far. He too has faced other tumors as recent as last month in his spine this time. Doctors removed it and all is fine. He hopes to have a long life. This to me shows success with the traditional treatments and you would have your Mom at home. Dale Conlan, a friend at NALC.