Tuesday, April 3, 2012

Addendum

by Michael

I thought I'd add a bit more to Kate's post, to provide some logistical detail.

As you can see from Kate's post, she's been in a bit of a drug haze this past week. She's been trying to, as the doctors say, manage her pain.

It hasn't always been possible. It has on a number of occasions been awful.

As Kate said, tomorrow she is changing her pain drug regimen. Three packages arrived tonight, which currently sit on our dining table. Tomorrow a community care nurse will come in the morning and tell us how to hook up some kind of apparatus that injects a pain killer (a narcotic) into her upper arm.

The apparatus is not like a PIC line (which Kate had during last chemo). But what it looks like, we'll have to wait until tomorrow.

Back in January, I wrote about the problem with plans; these days, I feel unable to make plans. I tell my employer that I can't commit to anything. I don't know if I'm going to be able to come to work next week or not.

Managing pain, and managing change, is the theme of our life these days.

Last week, I wrote about our Manic Monday. The pain in Kate's back had surged. We went to Sunnybrook. We got the doctor to look at her, and then Kate started 5 days of radiation.

That radiation was supposed to lessen the pain, but (as it did last time) there was expected to be a surge in pain before it receded.

The surge in pain was significant on Sunday and yesterday.

Yesterday, Kate was in agony, and we called the hospital a number of times. The doctor asked to see her today. And today the doctor changed her pain meds. No more oxy; on to something else.

But tomorrow we will be back at Sunnybrook. Our visit today was to see the palliative care doctor, who is managing Kate's pain meds. Tomorrow we visit the oncologist, Dr. Trudeau.

We have been told a number of times in recent days that the doctors are talking to each other. This is the much discussed cancer team. At Sunnybrook, we have experienced this team strongly, and we are confident in them. They have responded to Kate's needs ... as they have changed.

At this point, I would like to impress upon everyone that Kate's needs are changing.

She has advanced cancer. The adjective is earned.

She is living under enormous stress. (As am I, I acknowledge and confess.) As is the family and extended rings beyond. (It is a stress difficult for all of us to even articulate.)

As Kate has written in her most recent post, she likes to receive emails and visits. She likes to talk to friends and catch up. We also know that everyone is living with different stresses. Life abounds in all its complexity.

The medical goal for Kate right now is stability and quality of life. The cancer is advancing, but the disease is being fought as we can. Kate is taking oral chemotherapy two weeks out of three. It is causing nausea and ruining her taste buds and inflaming her hands and feet. She has had radiation twice to reduce pain from the cancer in her spine and pelvis. The cancer in her liver was reduced, but it was not removed.

We are, therefore, aware that the time is likely approaching when we will need to ask for more help. But we're also not rushing into anything.

And we know that puts others in a bind (wanting to help, but not knowing what to do); but we don't know, either.

Advanced cancer is about uncertainty and mystery. We are living both in full measure.

As I said, the medical goal is to extend Kate's quality of life. The quantity of her life is unknown to us. As it is to any of us. And we are trying to engage in full catastrophe living and enjoy every sandwich and, it cannot be understated, Kate expects as much from everyone else.

We have come through the last week feeling exhausted but optimistic. Kate hit the wall a couple of times. There is no doubt about that. But we engaged the system, and the system responded.

We are expecting in the coming days that her pain will fade and we will continue as we can.

But we can't make any plans of any significant complexity. We don't know how this disease is going to evolve.

We are going to try to live as normally as possible, and we invite all to be engaged in this life with us.

We feel immensely blessed to be in the thoughts of so many. We know you're there.

We really do. And we thank you.

Apropos of that, here comes the sun.

3 comments:

Anonymous said...

Hi Michael, Don here.

Gabrielle gave me the link to your (shared) website. I tried to post yesterday but it didn't seem to send for some reason.

I know how I appreciated your comments four years ago when our son was sick, and hope I can return the favour.

There's not much that can be said at a time like this except that we're thinking of you. Easter might seem meaningless now or you might find something nourishing in Bach's Passion cantatas.

As you know, Heiko died at Christmas time, just as the world was celebrating new birth; it seemed ironic at the time, but when I read through Bach's Christmas Oratorio it was all there; birth and death intertwined as always.

Take care of yourself, as you take care of those you love. - Don

Ian Hadden said...

I smiled when I read Kate's words about Michael's face being "sheer terror" as I thought mischievously that she caught you on a good day! Please know that you continue to be in my thoughts and prayers. Reflecting back on my experience, life doesn't seem to provide answers nor explanations. It is, well simply, life - filled with the complexities of "warts and all."

Michael said...

Don and Ian - thanks. Knowing something of the path you've each trod, i appreciate this very much.