Update and a lesson

Steve received an infusion of Avastin this morning at the cancer center. The new chemotherapy, Carboplatin, is administered just once a month, but he still gets Avastin every other week.

His blood counts were good enough. They're almost all out of range, but they're at an acceptable low for treatment and not low enough to warrant injections or transfusions.

Steve's symptoms continue to be the same or get a tiny bit better.

He looks steadier with his walker, and when he has to take a few steps without the walker, I get only slightly nervous instead of panicked.

His left hand is a little bit more responsive. He's still unable to type with the hand or convince it to do much, but it's reacting a little quicker today compared with a month ago.

His voice comes and goes. It tends to be stronger in the morning and weakens throughout the day. Today, though, it started slurred and is just about gone. Katie's sleeping, and Cooper is still at school, so we're having quiet time right now -- both of us working on our laptops.

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Last week I had a little meltdown on the phone.

Every few weeks I talk with a registered nurse and case manager representing our health insurance company. On our last lengthy conversation, I said something about home health visits that alarmed her.

She called back last Thursday morning to discuss our home health options.

Our policy allows 40 home health visits each calendar year. That's 40 visits total, no matter the need.

Steve's PICC line requires weekly dressing changes, so when he was discharged from the hospital in December, the social worker arranged for home health (just in time for Steve to come for Christmas).

We've used that nurse almost every week since. She comes once a week to take vital signs, ask about symptoms and change the dressing.

In addition, Steve recently started receiving physical therapy and occupational therapy at home. The two therapists were integral in making life at home easier and safer for Steve. His mobility and fine motor issues required some professional advice and care.

With all those visits, we've already used about half of the allowed visits for 2009. And it's not even mid-March.

The nurse transferred me to a customer service representative to verify the number 40 and to give me an opportunity to ask about exceptions.

Our policy allows no exceptions.

And that's when I started to cry on the phone.

I was upset with the whole situation -- that we'd already used so many visits, that I hadn't researched the number allowed, that there was no room for exception, that Steve has lost so much mobility that he even needs home health at all.

I had numbers running through my head -- $250 per nurse visit, unknown totals for therapy (I haven't seen those statements yet).

I pulled myself together and worked on solutions.

We'll now have nurses at the cancer center change the PICC line dressing at weekly infusion appointments or during lab draws.

We asked the PT and OT to discharge Steve as soon as they felt comfortable doing so. They both have been complimentary of Steve's hard work and were able to release him this week.

If Steve needs further PT or OT, we'll take him to a clinic unless the work must be done at home.

There are truly countless details to track with a serious illness. I have tried so hard to keep on top of all of them, but I've learned that that's not entirely possible. After last week's meltdown, I've studied more closely specific details of our insurance benefits. A tough lesson -- but at least it happened before we ran out of visits altogether.

Tyra and Steve last week, photo by Katie