Sunday, August 16, 2009

a lot resolved, but much to do

It's going to be a very, very busy week, especially for Dad. We four guys sat around the dining room table this evening, within sight of Mom, and talked about several topics relating to her decline and to a host of post-mortem issues. It wasn't an easy discussion for any of us, but we somehow managed to muck through it. Not everything was settled, but it was still good, I think, for the four of us to get together and see where we all stood on crucial matters. A quick overview of the discussion follows.

1. Mom's trip to Texas: the purpose? the necessity? the pluses and minuses?

After Dad's recent talk with Dr. Conrad at MD Anderson, we've decided that it's best to keep Mom in northern Virginia for her treatment. Dr. Conrad recommended NCI's Dr. Fine-- whom we met a while back and who did take Mom on as a patient-- as the go-to guy for clinical trials and Avastin therapy. If Mom goes down to Texas, it will be for the sake of her sister, who apparently cannot make the trip back up to Virginia due to her age and her own raft of health problems.

Right now, Mom is probably in good enough shape to make such a trip, but timing is of the essence here. Her trip to Texas will probably have to occur before her bone flap replacement surgery: once she undergoes the surgery, she'll again be vulnerable to infection (but she'll no longer need her helmet) for about six weeks. During those six weeks, her cancer will continue to progress. Now, while Mom is still relatively lucid, ambulatory, and interactive, is the best time for her to see her sister. After the surgery, Mom's not going anywhere.

Another complicating factor, however, is that Mom might have to start second-line therapy (probably Avastin) fairly soon-- maybe within the next week or so. I need to confirm this, but from what I've found online, it seems that Avastin is administered intravenously, once a week. If this is so, then this limits the amount of time during which Mom may travel, irrespective of the bone flap surgery question. A short trip between Avastin sessions may be possible.

2. Hospice care: when to start?

Pastor Jeri had sent me an email in which she counseled that searching for a hospice care provider is better done sooner than later. While it feels unreal to do this while Mom is relatively vigorous, Dad and I have seen the MRI scans of her tumor growth and know that every moment counts.

We plan to talk further with Pastor Jeri, with Inova Home Care, and with Corinne, the social worker at the radiation oncology department, about hospice care. Always keeping in mind that hospices are businesses, we'll need all the help we can get to suss out the best care possible. It's our understanding that Medicare covers hospice expenses, which frees us up to find high-quality care for Mom.

We'll begin our inquiries this week.

3. Final things to do with Mom?

I wasn't able to keep my composure when talking about this with my father and brothers, but I felt it was a subject we at least needed to broach. We agreed that Mom has enjoyed her drives to different parks, so something like a road trip isn't out of the question. Again, much depends on how Mom is doing, what sort of second-line treatment protocol she's on, and whether we'll be driving in regions where hospitals are readily at hand. However, as my brother Sean noted, the advantage of a road trip is that it's easily canceled, if necessary. It's not so easy to cancel a trip to, say, Europe or Korea.

Ultimately, nothing specific was concluded here. We made no firm plans for any sort of trip or activity, but I expect we soon will.

4. Memorial arrangements and other post-mortem matters...?

We all agreed that, as far as the memorial goes, this can be arranged fairly straightforwardly with our church. There might be questions about who says what and which hymns will be preferred, but we've got a good church and I'm sure such issues can be resolved smoothly when the time comes.

We didn't, however, discuss some questions I'd had about what to do with many of Mom's possessions. This promises to be a difficult topic, due to the ambivalence that arises when a loved one dies: on the one hand, the presence of a loved one's possessions can be a painful reminder of one's loss; on the other hand, the absence of such possessions can engender an entirely different feeling of loss, and possibly also of guilt for having given away or sold the possessions in question. There's a fine line between keeping something for sentimental reasons and being an irrational pack rat. Personally, I'm not that sentimental about anyone's possessions, including my own: possessions aren't the person.

But others may feel differently, and for legitimate reasons, so it's an important matter to discuss. What to do, then, about things like Mom's clothing, cosmetics, jewelry, etc.? What purpose is served by keeping them? What purpose is served by not keeping them? These are issues we didn't cover this evening.

5. Second-line therapy...?

We asked ourselves whether it would be best to go with MD Anderson or NCI, and ultimately agreed to keep Mom at NCI, based in large part on assurances from Dr. Conrad in Houston that Dr. Fine is the man for these matters. Whether we're talking about Avastin or other therapies, as well as about clinical trials, NCI seems more likely to be the place for us.

Taking Mom down to Texas for a long period of time causes several problems. First, it's a burden on my aunt, who is apparently too frail to make another journey up to Virginia. If she's too frail to make such a trip, there's little use in asking her to care for Mom. Second, the city of Conroe, where my aunt lives, is 60-90 minutes away from MD Anderson by car, and we have no idea how often it might be necessary to make such a drive. Can my aunt and/or my cousin afford to do this? Finally, if Avastin therapy is available at NCI, which isn't that far from where we are, then why not have Mom treated at NCI? She can remain in northern Virginia, where her circle of care is, where her (adoptive) roots are, and people can visit her whenever it's possible for them to do so.

We also talked about looking into Gamma knife therapy, and Dad, who will be calling three doctors in the morning, has been charged with asking all three about this form of therapy. The time has come to look seriously into second-line approaches; first-line approaches have, we now know, proven to be a bust.

Dad has a lot of calling to do on Monday morning. He's also dropping off more information at NCI, and thus may have a chance to speak face-to-face with someone there about some of our questions. We hope to have Mom physically in front of Dr. Fine this week. NB: This week is also Mom's final week of in-tandem radiotherapy and chemotherapy.

6. Maqz the dog...?

We also discussed whether and when Sean might bring his dog Maqz over to see Mom. Mom loves Maqz, a precocious obsidian chihuahua with a snowy patch on his chest. Maqz loves Mom, too. None of Mom's sons is married, so Maqz is the closest thing Mom has to a grandchild. She dotes on that dog.

With Maqz comes the question of infection risk. Sean says he'll be sure to have his dog washed and groomed before bringing him over. My own feeling is that Mom should see Maqz well before or well after bone flap surgery, when her skin is more or less whole.

7. What to do about the house?

While I'm fine with talking openly about the state of my own finances, I'm not too comfortable writing about anyone else's, especially without their permission, so I'll write only in general terms here. Suffice it to say that, when Mom passes away, Dad will lose a significant source of income from Mom's retirement benefits, and this will affect the family's ability to handle the mortgage and other expenses. Dad told us that there is the real possibility that we might have to sell the house to make ends meet.

What a shame it would be to lose the house, with the renovation not even fully completed. Watching the house's transformation has been quite a heartening experience; losing the house after Mom's passing would be a cruel twist of fate, and would greatly add to our troubles: it would no longer be just a question of what to do with Mom's possessions, but of what to do with all the family's possessions.

We three sons therefore resolved that we would do what we could to help Dad keep the house, pitching in X number of dollars per month to keep things afloat. I'm currently unemployed, having quit two jobs just before my planned departure back out west, but I'll seek work when I'm able, doing what I can to defray Dad's expenses (as well as take care of my own mountain of debt), especially after Mom's passing. The point, though, is that we sons will all be there for Dad, and we'll do what we have to to keep the house. Imagine being forced to move out just after losing the woman you love best in the world. Not a happy prospect.

8. Bone flap surgery...?

We didn't talk about the above topics in the order in which they're listed; this topic was actually one of the ones discussed early on. David and Sean both proved somewhat hesitant about putting Mom through the risk of infection again, with Sean saying he wasn't strongly against such surgery and David saying he wasn't strongly for it. Only Dad and I seemed solidly for the surgery; David and Sean consented to the idea with no real objections, though Sean cautioned that we would need to be hyper-vigilant on Mom's behalf: another bout of MRSA would be a true disaster. Having made the decision to put Mom through this procedure, we all have to step up and do what we can to make sure Mom doesn't go through the same MRSA horror again.

How the surgery would be coordinated with the second-line therapy is a question that we hope the docs can answer either tomorrow or Tuesday. This is one of the topics that Dad needs to cover with the neurosurgeon (Dr. Leiphart), the infectious disease specialist (Dr. Yoho), and Dr. Fine at NCI. Dad will also ask Dr. Conrad his opinion early this week.

So there we are. That's a brief overview of a discussion that took us from dinnertime until almost 10:30PM. There's more to talk about, much more, and as the situation changes, we may have to revise some of the conclusions we've reached. But a partial action plan is in place, and as we nail down dates for therapy and surgery and a trip to Texas, we'll have a calendar to take us through... well, through the next little while, however long that might be.

UPDATE, 1:58AM: I may have answered our Avastin/bone flap question. According to this site, Avastin cannot be administered until well after surgery:

Do not initiate therapy until at least 28 days following major surgery and after surgical incision has fully healed.

Avastin has been associated with various hemorrhages and even gastric perforation-- a frightening prospect for us when we think of what Mom has already gone through. Whether Avastin is even worthwhile for Mom is a huge question, since about half of all brain cancer patients don't respond to Avastin therapy. A team at UCLA, however, has developed a way to tell which patients will respond favorably to Avastin. Read the July 31, 2009 article here.

Putting these articles together, I surmise that the best course of action may, in fact, be to bow to David's and Sean's misgivings about bone flap surgery-- at least for now. As they both pointed out, second-line therapy is the current priority, not Mom's bone flap. If Mom proves responsive to Avastin and experiences some tumor shrinkage, it might be possible, at a later date, to have Mom undergo the operation. But from what I've just read, it sounds as if bone flap surgery is off for the foreseeable future.


1 comment:

Maven said...

My heartfelt two cents:

Re: #4. I highly recommend getting as much of the paperwork started regarding the person handling your mom's final preparations (re: cremation vs burial).

No one wants to be in a hospital room or at your mom's bedside rushing to fill out paperwork "at the moment" she transitions.

My experience w/my dad's passing, unfortunately there WAS a snafu w/FedEx not delivering paperwork despite it clearly being marked for a Saturday delivery, and despite the recipient's location clearly being a funeral home/crematoria, this added additional angst for all of us with the knowledge that dad was STILL in limbo at the hospital.

Emotions will be running high, and you may find yourself (or your dad, or your brothers) to get upset about mundane things, and even things you have no control over.

In advance, it couldn't hurt to contact the funeral home your family is planning on utilizing to find out everything that you can do now, paperwork wise, to set things up.

When you are in the throes of grief immediately after, you won't want to be thinking about prices and options. You'll feel shot out of an emotional cannon.

Regarding wanting to come up with a plan for mom's possessions, there is nothing that says you have to get rid of everything immediately.

Perhaps rushing to purge (because the sight of the possessions is so highly emotional) you may inadvertently give away something that you'll think in hindsight you would have cherished.