Saturday, August 1, 2009

walking better, and a discussion about the future

Mom's balance and gait have improved, and she talked with me a tiny bit when I first saw her today. She even went over to the kitchen and tried washing some dishes. We sat her down for lunch, and she went at it slowly but steadily.

I guess this is what we can expect from here on in: a downward-trending but sinusoidal pattern that indicates a slow overall decline marked by moments of improvement. The Decadron has been helping with Mom's new edemas. How long it will help, and exactly how much the tumor has progressed in other parts of her brain, is something we'll have to talk with the doctors about this coming week.

As mentioned a long while back, we want to get Mom back over to MD Anderson in Houston, and also to the National Cancer Center in Bethesda, Maryland again. The goal will be to see who has what to offer in terms of second-line therapies. This sort of long-distance travel can't happen until after Mom's bone flap has been put back in-- a procedure that is itself contingent on Mom's having finished her initial in-tandem radio- and chemotherapy (it is, finally, truly in tandem, and has been for a few days). So the future looks a bit like this:

1. Mom finishes her radio- and chemotherapy, then begins to enjoy a four-week break.

2. Mom gets her synthetic bone flap put in, probably during the break from therapy. This period will be dangerous: re-incising her scalp reintroduces the original risk of MRSA flareup.

3. Mom, Dad, and I fly down to Texas to visit MD Anderson and stay with relatives there. Hopefully, this is will happen during Mom's four-week break, but this depends on how Mom heals from her bone-emplacement surgery. Mom might still be able to travel even after her break is done, because the second phase of standard treatment is chemo-only: she can take her Temodar no matter where she is.

4. Depending on what MD Anderson has to offer Mom in terms of second-line therapy, Mom and Dad might remain in Texas for quite a while. If MD Anderson actually has something to offer in terms of innovative treatments and/or clinical trials-- then Mom will remain in Texas while this treatment occurs. Dad and my relatives will provide Mom 24/7 home care, just as Dad and I are doing here, with help from my brothers when they can make it over. If not, if the docs at MD Anderson feel they have nothing more to offer Mom, then Mom will come back up and stay with Fairfax Hospital. The National Cancer Center will remain in the loop since Mom signed a consent form to be part of their ongoing GBM research.

5. I've already made it clear to my relatives that Mom will spend her final days in Virginia. This is where her life is; it's where all her friends are, and it's where her immediate family is: her husband, her sons. If Mom declines rapidly while in Texas, we'll talk with the docs about our wishes and have her brought back up to her home to allow her story to end in northern Virginia. As painful as it is to do this, we have to think about the inevitable future.

6. No matter when we do finally get down to Texas (hopefully late September, but possibly later), I personally won't be there that long. The house in Alexandria can't be abandoned, and I can't ask my brothers to house-sit for an indefinite period: they both work all week long and have their own places to take care of. Both are usually dead tired when they visit home. Expecting them to take over chores like lawn care and other forms of maintenance, along with handling the bills that will be arriving, is too much. I'm the one with all the free time. Dad, meanwhile, needs to stay with Mom: he's the one who knows the most about how to care for Mom's bodily needs, and he can help my relatives understand their part in how to care for her.

So I'll come back from Texas after about a week and will manage the homestead alone, talking with Dad via Skype or cell phone or email whenever bills arrive, or whenever we need to deal with medical paperwork. There are household projects that need doing, and I might be able to get them done during this time. I'll also have to find work, and since Mom will be down in Texas, I won't be limited to working from home. If, however, it turns out that Mom will be coming back from Texas in a matter of weeks, then I might just bite the bullet and take up private tutoring.

As you see, there's always a lot to think about, and this includes thinking ahead. Meanwhile, we can enjoy the fact that Mom's balance and ability to walk seem to have improved for now. I'm taking her out for a spin at 4PM; we'll visit a local park, and I might even get Mom to walk around a few minutes before we retreat to the air conditioned comfort of the car. It's hot today. Hot and humid-- my least favorite weather.


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