Yesterday’s UCLA visit brought some much-needed good news. Susan’s MRI revealed enlarged ventricles that indicate the build-up of fluid in her brain – hydrocephalus. While that’s not good news alone, it might mean adjusting the shunt that was implanted last fall for the same condition could bring relief from Susan’s terribly weakened state. The last adjustment brought quick and dramatic improvement and months of relief. But tumor progression apparently can change conditions in the brain and cause a return of hydrocephalus in some cases. I am waiting eagerly for the consensus at tomorrow’s brain tumor board meeting when Dr. Nghiemphu will present Susan’s scans and her opinion to the other neuro-oncologists and neurosurgeons. Perhaps Dr. Bergsneider who implanted the shunt can make the adjustment soon.
Yesterday’s MRI also showed a big decrease in brain swelling, more good news. It looks like two treatments of Avastin have been effective. But there’s no definite reading on tumor growth right now since they’ll need to see a series of scans without swelling for a meaningful comparison. At least we know there are no new tumor sites. Susan had another Avastin infusion yesterday, but skipped the CPT-11 chemotherapy this time since its side-effects may be complicating her symptoms. She’s still extremely weak, tired, and mentally slow, needing full-time custodial care. We’ll have a wheelchair delivered tomorrow to help with mobility and hope we won’t need it for long. With so much muscle loss from steroids, she’ll need to work a while to get her strength back. Meanwhile, we’re doing a fast decadron taper to 6mg from 8mg this week and to 4mg next week. Susan’s whole ordeal recently has been puzzling since there can be several possible causes for her weakness – tumor growth, decadron, chemo, or now hydrocephalus. We hope for some action and relief, and soon.
I’m coming to know the challenges of dealing with acute long-term care needs. They’re emotional – there’s the pain of seeing your loved one in a compromised state. The challenges are physical – lifting, transferring, bathing, dressing, and doing them over and over again. It’s a grind. The challenges are psychological – the routine pressures of daily life do not stop just because your helpless loved one needs what they need when they need it. The pace of both worlds is hard to reconcile and the contrast is enormous. The challenges are spiritual – waiting on the Lord can seem to be endless when your circumstances intensify. I identify with the Psalmist who cries out, “How long, O Lord? Will you forget me forever? How long will you hide your face from me?” But somehow, God meets our needs everyday with peace for emotional pain, rest for a weary body, strength for a troubled mind, and His presence when hope has yet to be realized. This is so hard – and God is so good.
