Healing

So for the past two weeks as we've moved through the maze of hallways and offices and examination rooms and infusion stations and nurses desks there's been this confusion. It goes like this...

When you are getting chemo it goes in three week rounds. You get a big dose which is going to flatten you. That lasts about a week. Then you have week two, leveling out, seeing light at the end of the tunnel. Then there's week three, rising up to something like OK, getting your land-legs, feeling like a human. Just in time for the next round, and the party starts all over again.

This could go for 3 months, 6 months, depending on the case. For C this is planned for about 43 weeks.  Brutal.

But on the down weeks 2 and 3 it's not all tea and naps and regrouping, the patient still goes in for infusions of poison, once a week, the "push". These doses are generally easier to take, but still.

So today should have been a push day, a dose of vincristine. But when we'd been in on other days it wasn't showing up on the schedule. So this morning we started calling at about 8 a.m. to clarify. We're not experts, but it seemed pretty clear that today should be a vincristine push. We called and all that was on the schedule was some blood work at 1:15, which it seems usually comes before a dose to just check and see that the survivor is up to it, but no infusion on the books. We left messages with the appointments desk, we left messages with both of Dr. C's nurses trying to make sure C was actually supposed to go in (which for us is about an hour each way). No response. All morning. So after lunch Clare heads across town, picks C up and heads to Duarte and City of Hope.  We're pretty sure this is supposed to happen.

They get there, and still no one knows what's going on. There's no chart, there's no appointment, the nurses aren't responding to messages, and without an actual treatment order the pharmacy isn't going to prep the meds, so they wait in the waiting room. C is sick, ready to puke at any time, he just wants a bed. They sit there for an hour, C watching Glenn Beck on the waiting room TV saying, "Have you seen this guy?!" They hear Dr. C is downstairs and the receptionist tells Clare conspiratorially to go down and grab him, get this straightened out.

She goes downstairs, knocks on one of the locked doors, a nurse answers and Clare tries to explain that they are there, adrift, a patient without an appointment, the nurse grabs a kleenex and writes down C's name and "vincristine".  She says that the nurses upstairs need to call for the chart, and off Clare goes.  The nurse upstairs says they have been calling, and heads off on foot to figure things out.

I'll stop there, but it goes on. They were there for hours for what should have been a one hour visit at most. Tomorrow I'll call and raise hell, because this is not the first time we've caught mistakes in the regimen, and believe me, we are idiots in the world of oncology. We are generally treated so well and with such compassion and care by the staff, and organizationally it's usually an impressive machine. But this flaw seems to lie at Dr. C and his nurse's feet. They should have scheduled the off-week infusions, it's certainly not the floor nurse's responsibility. From what I can see this is their fault and I will ask them to explain what went wrong. 


OK, that's the rant. Hardly inspirational. So here's something that makes it worth getting to the end of this post. Our sister Karen is the pastor at Montclair Presbyterian Church near Berkeley. She presented her sermon recently called "Healing", and in it she quoted from this blog in support of a story from John 5. I know I've now referenced Christian teachings or text here several times, and to clarify I am at best agnostic. But I do know the value of a good story, a meaningful story, and I have a deep affection for the beauty and potential of the human spirit. Call that what you will. And the poetry of that spirit is communicated so well in many religious texts, especially when interpreted by those that have delved deeply into its rich history like Karen and Chandler have. Over the years they have brought many of those texts to life for me.

So Karen used some of the stories written here in her sermon which you can listen to here. A story that fits right in to what I've been writing about, about the relationship between someone who is sick and with healing, about those around them who are needed, as stated in the text, to "lower them into the pool", the pool where relief and healing can be found, and finally about the strength it takes to be healed.

This tagging photo that just arrived captures some of this to me, helplessness aided by someone who has the ability and the affection to be of service, and the gift that is to both people involved.  Strength and tenderness, need and ability, the gift of giving.



I think of C and Clare today, miles from here, in those anonymous halls, knocking on doors, pestering nurses, demanding to be heard, advocating for our brother, catching the mistakes, being of service, and insisting that C be lowered into the pool.