Friday, April 16, 2010

Necrosis? Yes.

The results of the MRI are in. I have necrosis in my hips, and a 25% compression fracture at L4. The next steps are to find out how to modify the Dana Farber Protocol to prevent any more damage from steroids, and to involve an orthopedic surgeon in determining how to repair the damage that has taken place. Yes, I may require hip replacement surgery. The irony? The past few days I've noticed significant pain reduction.

I'm upset, I suppose. A little sick to my stomach. I think it is the word Necrosis—it is gross. The main vein in the hip just didn't supply it enough blood and now part of it is dead. Part of me, inside me is dead. I'm part dead. A zombie? Oh well. Had I not taken this treatment I would be all dead. Everything I get beyond leukemia is gravy, right?

I had a very special pal in Arnhem Land. She suddenly took ill and died in a matter of months. As she deteriorated, I found it harder and harder to let her go. I would say things to try to convince her to stay. I'd say, "Don't forget Gunga!" and she'd answer, "Gungawu! Gungawu!" (Gunga is the plant fiber we collected and weaved into baskets). I thought she was calling out in defiance of death. I understand now she was lamenting something she would miss.

What is happening now isn't life threatening. It is quality of life threatening. Nonetheless, I've been thinking about death, and realizing the hard part about dying is all the things of beauty and joy, particular to your unique life, you will miss, that will end with you. I love to write, I love to make things. I love my home. I love Starfall, and my Starfall family. I love the promise of plans for the future—even simple ones like upcoming farmer's markets and promising to use less plastic. And particularly I love the life I've created with my beloved husband Randin.

I wrote previously that death is another word for the unknown. And yet death is the only certainty. Death will happen, assuredly.

Sigh. I'm morbid today. Sorry. There's something dead inside me.

Thursday, April 15, 2010


Yesterday, after hours of trying, my PICC line wouldn't give blood. When we removed the dressing the site looked sore and irritated. My nurse and I both gasped. We scheduled the removal of the PICC, and the installation of a portacath for this morning.

A strange powerlessness takes you when you undergo long-term care for a major health ordeal. One procedure follows another and you accept it as a matter of course. You decide without thinking.

This morning the prep nurse, by way of conversation asked "Are you just tired of the PICC, is that why you are replacing it?"

I said, "No, the line wouldn't draw, and the site is irritated."

She said, "I can't say about the site without seeing it, but if the line wouldn't draw, did you try TPA?"

We hadn't.  Apparently, TPA is a medication for stroke patients. When given within the first half hour of a clot-based stroke it lessens the damage. It also effectively restores catheters.

Hearing about the TPA for the first time, I felt a surge of power. Honestly, I haven't felt this for some time. In that moment, I knew I could make a decision about whether or not to have the procedure. I could direct the course of events.

I returned to the bone marrow clinic. The PICC site still looked angry, but had improved. My nurse administered TPA, and now the blood is flowing. We'll continue to watch the site, but for now, today, no new hole in my body.

Since starting this adventure I've had 3 PICCs, a central line, and a portacath. From what my health-team says, installing and removing these things is commonplace, and I think because it is so common we've become flip about it. These procedures are not major, but they are very unpleasant for the person undergoing them, and should be avoided!

But besides being flip, an underlying cause for too many procedures is consumer culture. I'm not kidding. Even in medical appliances there's disincentive toward maintaing the good and serviceable when there is a promise of a new modern gadget on the horizon. In catheters, this promise is the portacath. It dangles there, like a utopia of close-to-normalcy (you can go swimming!). I was seduced when we installed the first portacath, I think. I held the idea that it was better than the central line, and so when I had trouble with the central line, instead of saving it I leapt to the newer better thing. That decision turned out to be a disaster—the portacth never healed and had to be removed. This is how I wound up with my humble PICC. To think, I almost fell for it again.

Yesterday I had an MRI. High-dose steroids, a mainstay of conventional cancer treatment, can cause necrosis in the joints. I took high-dose steroids during Consolidation II and am still taking steroids now, but at a much lower dose. It is not too likely I have necrosis. Hopefully the MRI will rule it out as a cause of the hip-pain.

I love being in the MRI machine. It makes amazing, hypnotic sounds.

Saturday, April 3, 2010

Poor Sport

I'm alive. Leukemia remains absent. Chemotherapy is ever so present, but tolerable, apart from the weirdness. Weird things happen when you are regularly poisoned. Well, perhaps weird things always happen, but on treatment they seem weirder. Currently, my legs are on strike. I hobble about like an old lady; my grandfather's cane has been called into action. A few days ago, my left shoulder and ribs spontaneously began to ache as if I had broken a rib, and...wait. This is starting to sound like the diatribe of the unwell. What's the use? Sometimes I feel fine. Sometimes I don't. As Randin puts it, I'm the 75-90% Brandi. 272 days to go. I made a t-shirt to celebrate.

Randin and I love the movie Galaxy Quest (IMDB, Netflix, Amazon). Its catch phrase "Never give up! Never surrender" has been on my mind since aunt Margie died. I like it when they say it, and yet I don't like it when I try to apply it. 

Margie asked me if I thought she was giving up because she decided against the chemotherapy that might have prolonged her life another month. I said, "Hell no! Had I understood what I would endure, I wonder if I would have agreed to it. And that's with the hope of a cure at the end of the tunnel, not just one more month of living!" 

Here's the deal with being a cancer patient: your experience is almost always framed as winning a battle. I'm telling you, this kind of language is not helpful—to have a winner you have to have a looser and so many equate dying with loosing, and living with winning. Is dying gracefully loosing? Is living miserably, at any cost, winning? Life is a game, I'll give you that, but the board is far more complicated than start and finish. We all die, so the finish line always death. That doesn't equal anything, death is simply a word for the unknown.

Somewhere I learned the adage, "It's not whether you win or loose, but how you play the game that counts." and I must really believe it. The outcome (living/dying, winning/losing) is irrelevant if the quality of your playing is what you value. When I'm dead, as far as I know there's no longer anything to worry about, and while I'm alive, I'm not dead so there's nothing to worry about. With nothing to worry about, what do I do with all my spare time?

Apparently, I use my spare time to think about "Never give up! Never surrender!" 

Back in the summer 2009, when the game was beyond weird and I was playing as 0-20% Brandi, and it looked like I might loose, I tried to give up. I didn't try very hard mind you, but I did beg for the game to be over, or for the rules to change, or for a different game. I waited, and waited, and nothing; the game was still on and I was coming off as a poor sport. Eventually, I surrendered the notion of giving up, accepted the game I was playing, adapted my moves to compliment the energy and strength available to me. 

Aha: "Never give up! Always surrender!" 

To surrender is to accept what is, to not give up is to act in alignment with it.