My Mask

This is my mask. I wore it during the CNS phase of my treatment. For 8 sessions in March 2009, a nurse would place this mask over my face and bolt it down to immobilize my head while I received radiation to my brain.

These days I keep it on top of a bookcase in my office. No one seems to notice it, unless I point it out.


You might wonder how the mask was made. While lying on the radiation table, a technician pulled from water a white plastic frame shaped like a basketball standard, strung with a taught, rubbery mesh. He held the dripping frame over my head and in one motion pulled the frame down stretching the mesh over my face. He then locked the frame onto the table below. As it set, the mesh molded to my features—my face at that moment, like a death mask or a snapshot.

The mask kept me from moving my head, even a little bit, ensuring the radiation would land where required and nowhere else. The markings are reference points, the red line is the path. Behind it, I was protected from myself. It communicated to those on the outside how best to behave.

The CNS Phase of the protocol initiated my descent into despair. Somehow 8 doses of radiation to the brain alternating with 4 intrathecal chemo doses alongside the introduction of PEG-Asparaginase on top of all the other "regular" chemo goodies overwhelmed, bolted down, and immobilized me.

I didn't write about the mask at the time. I was decimated and unable write about anything. I haven't written about it till now because the experience has been too near or perhaps because I'm still wearing the damn thing. No one seems to notice, unless I point it out.

These snapshots (left to right, top to bottom) span diagnosis November 2008 to this summer July 2010. Allow me to unmask myself:

1. Denial.
2. I'm terrified.
3. Holy shit, I want to die.
4. How is it possible I am still alive?
5. I am hideous, but the birds outside are beautiful.
6. Who is this person?
7. Maybe I will come through unscathed?
8. Bilateral avascular necrosis in the hips. 
9. Every step is excruciating.

See the picture with the arrow? There. The light has gone out of my eyes. The mask has set.

After my last radiation treatment the team gave me the mask to take home as a keepsake. I carried it to the clinic where fellow patients, particularly those who had been through radiation themselves, looked on sympathetically. One ventured, "What will you do with it?" I said, "I don't know, maybe fill it with peat moss and try to grow some herbs out of it, like a Chia Pet." He laughed, then said, "I smashed mine into a million pieces with a hammer." 

Yah. I'm not ready to smash my mask just yet, the experience is too near. I still need my mask to protect me from myself and let outsiders know how best to behave. Or is it let me know how to behave and protect outsiders from themselves? 

Thankfully the CNS mask isn't the only one I own. I also have this delightful number. Cooling, soothing and though the color might contradict, completely radiation free.  For those of you on the inside, well, you've always been on to me and the whole mask thing anyway.

44 days of chemotherapy including 1 lumbar puncture, 2 vincristine, 6 methotrexate and 30 6MP to go. 78 days to the first hip replacement. 

2 Years?

Dear Dad,

Two years now, you've been gone. It's funny, you always said that anniversaries of events don't matter, but man I know you were mad when I didn't call on your birthday, or father's day. So that was just bullshit. I wonder how you feel about the anniversary of your death? Does it mean anything to you? I won't know if you're pissed or not because you aren't around to tell me.

Part of me is relieved you haven't been here to witness the events of the last two years. They've been gruesome. Nationally and internationally the economy has caught up to itself. If you weren't already dead you would have died when you saw the stock market crash. 'Course you also would have had "I told you so" rights. Yes, Dad. I lost big time...still we'll see where I stand in 10 years eh? I laugh. I'll see where I stand in 10 years. And, well, people hate Obama. Our fickle nation wants to blame him for everything, as if our country's woes only began on January 2009. You wouldn't believe how much he's aged.

And of course, there's me. I got really sick. You would have hated seeing what happened to me. But I would have loved showing you how brave I could be. I wish you could have seen it. Daddy. It's not over yet of course. I'm a bit crippled these days. I'll be having hip replacement surgery in February. I don't know if I'm afraid of that, or of living for the next five months with this pain. 101 days left before my treatment for Leukemia is over. My first hip replacement surgery is February 1. 134 days to go till then.

But it isn't all bad. Randin and I have been blessed in so many ways. It's remarkable how the worst of times can bring out the best in people. And Oh! Dad! Randin and I bought a house, and we paid it off in full this year. I wanted to call you, and tell you, but well—you know how it is. It wouldn't have been possible to do it so soon had you not left such a generous gift behind. I'm sorry you weren't around to see one of your kids fulfill your wish. That's the way it was meant to be though, right. It was expressed in your will after all. You didn't expect to see it, did you?

Randin is composing music for movies now! And I continue to work for Starfall. Starfall saved my life, Dad. My work saved my life. Here's a quote for you, from Kahlil Gibran:

Work is love made visible. And if you cannot work with love but only with distaste, it is better that you should leave your work and sit at the gate of the temple and take alms of those who work with joy. 

Oh! And as for you, your eye tissue has been used to help someone see! Now, I wonder if the person who got your eye tissue will start seeing the world they way you did?

So that's it. I miss you.

Brandi

Exactly.

My friend Pam sent me this video—she said it made her think about Randin and I. It captures everything, without words. So if you've been wondering what it has been like, watch this:

Robert, along with All-Star Allison, performs a contemporary dance to Fix You by Coldplay....

Thank You, Roslyn.

To walk in my garden is like walking in a slow motion fireworks display. Each new bloom shoots up, explodes, suspends for a moment of fullness and then gradually descends into nothingness; nearby, another dozen plants, promise to do the same. This year the garden is tossing up familiar displays but in showy new colors. It is revealing blossoms never before seen. My mind and sometimes even my mouth is full of oohs! and ahs! I wonder: What will I see next?

Experiences, like spring blossoms, wait for the right conditions. They shoot up, reach their fullness, and dissolve again. Again and again this happens, one one top of another, creating infinite layers of reality. Sometimes I enjoy it as if it were a fireworks display. Other times, I call it bombardment and plead for a cease fire. 

While at the BMT clinic recently I spoke with a patient finishing up his treatment—one last bone marrow biopsy and his port removed.  "Finished," I sighed. 

That same day I met another patient—diagnosed with ALL and admitted the day before.  "New," I sighed.

To see them was to look forward and back: I'm not new. I'm not finished. This chemotherapy experience is dissolving. The AVN experience is arising. Ooh! Ah! I wonder: What will I see next?

No more steroids for me (better late than never I guess). I've found an orthopedic surgeon, recommended by a fellow AVN patient. The surgeon, my oncologist, and my better judgment all advocate waiting until my treatment ends (January 2011) before replacing my hips. 

If you're wondering how I feel, well, imagine a muscle bound man who hasn't touched his toes in years, who one day decides to attempt the splits. He works all weekend long to achieve this goal and pays for it the following week. Getting up and sitting down is slow and painful. He walks like a 90-year old woman; with tiny steps, unbalanced. I've been feeling like that since March. I'll be feeling like that until my hips are replaced. AVN is like having square pegs in round holes for hip joints. 

Can I get a cease fire, please?

I know there will never be a cease fire. I know there is no truly safe place to go. And so, to live, I create a sanctuary of appreciation all around me. Living is a fireworks display after all: one experience exploding on top of another, creating infinite layers of reality. 

This morning, while slowly, carefully, painfully sitting down on my porch swing, I saw a swallow tail butterfly. It was the same swallow tail I saw yesterday. It was the same pain I felt yesterday. I enjoy the garden show, the labor of a woman already dead, whose house we now own. My heart leaps.

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.

Wait!

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.

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.

Questions Answered

Hey, How are those 2nd degree burns healing?

All healed! It only took 18 weeks. There's still a little dryness and sensitivity, but thankfully no more dressing changes or limping.

Do  you intend to make a book about this experience?

Maybe? I don't know if I have anything significant to add to the cancer experience that hasn't already been written. At this point I'll wait and see how I feel when my treatment ends, if I discover there is some grand point to it all. What I have learned from this experience is how many people endure this disease—old ones, young ones, every shape, color, and size. The variety it touches makes me believe that the cancer experience is like any other experience of acceptance and aversion. Whether it is cancer or loneliness or disaster, the same process of integration is required. That may be a unique approach, and something worth sharing.  

I didn't know you lost a child! When did that happen?

When Randin and I were living in Arnhem Land I became attached to an aboriginal child there. Though she wasn't an orphan, she was sometimes neglected and found sanctuary with us from time to time. Over the years she stayed with us with increasing regularity, traveled with us to the US, and eventually moved in to our home in 2008. I love her very much, but we were unable to resolve our expectations. As I said, she wasn't an orphan, and so would transit between my home and her biological family as it suited her. There was no way to establish a routine, given the cultural differences, and finally we ended the relationship. The whole experience wasn't unlike a love affair, and since Randin and I have been so happy together all these years I'd forgotten what a roller coaster that could be. It was painful! And I was heartbroken in the end that she didn't choose me. Still, I wouldn't trade the experience, and I'll love her forever.

The Most Perfect Gifts are the Ones You Think You Don't Want

You've probably heard it said that happy people do not make good writers. It's true, the kinds of things happy people have to write about sound either unbelievable, braggy, or just plain boring. I suppose this is why I haven't written in a while. Life is going well—I'm at the end of the movie where it shows the viewer what the people effected by the events are doing a year later. It's somehow satisfying to know, but let's face it: it's usually mundane life goes on as usual fare.

And hooray for that! Though I'm not 100% (I get tired. I sometimes feel queasy.), I've returned to work, am eating normally, have gained and stabilized my weight, have taken up bead-weaving and crochet, started menstruating again, exercise regularly, resumed yoga. I'm well enough to feel annoyed by the intrusion of weekly blood draws and chemotherapy, well enough to complain and sometimes forget what a miracle it is to still be alive, and to remember again and feel grateful. So with all this return to normalcy, what do I have that is sad (or at least reflective!) to write about?

I suppose it is coming to terms with the uncertainty of life.

Before my diagnosis I didn't consider health, sort of like paper manufacturers don't consider trees, or electronic manufacturers don't consider e-waste. Now, health is always on my mind. Whether or not I fall out of remission is beside the point, what I realize is feeling great is never a given, no matter how many preventative practices you do. The past month I've been feeling sorry for myself, I was doing everything right before I got sick—I was betrayed by life! Then I remember, I was overdoing it, living three lifetimes in one: my career life, my yogi life, my home life, those three vying for top spot simultaneously while straddling the Pacific. Add the stress of international travel, my father's death, the loss of a child, and my inability to choose a life, and I exploded. That's what is so groovy about ALL (Accute Lymphoblastic Leukemia), it's present in all our bodies, just waiting for the right circumstances to be ignited. So betrayal is a funny word—funny interesting, not so much funny ha, ha. When betrayed I like to act all surprised: "How could this happen!" I say. But come on, I was begging for something to force a decision, a change. Nothing works better than a life threatening health crisis!

Leukemia isn't my life's first major betrayal. I was married once before. Eight months into it he revealed that he was a cocaine junky. He systematically showed me where he had hidden his rigs all over the house. In that moment, my dreams of white picket fences and homes in the suburbs and 2.5 children burst. "How could this happen!" I said. But deep inside I knew that I knew all along. I feigned shock, but there were signs. Just like there were signs that my immune system was collapsing. Somehow, in both cases I was asking for something to happen, for some intense experience to create a change in me. Please don't misunderstand, saying so does not mean that I believe I deserved it. But I certainly asked for it!

Why be surprised when things go awry? Why believe unpleasant changes, no matter how severe, are betrayal? Have you ever received a gift you didn't want? Somehow something you communicated inspired the gift-giver to choose it for you, and now that you have it, what will you do with it?

I think my 2010 word is gift. I am practicing giving them, starting with the gross or physical realm (i.e. actual gifts). I want to learn how to give wanted gifts, because I hypothesize being an adept gift-giver is an indication of your ability to listen; to hear what people want and need, and to respond to that. But I also hope it will help me better hear what I ask for. What requests am I sending out? I do not believe life betrays me. I believe it is trying to give me the perfect gift, and that it listens better than I can imagine.

When I was diagnosed, my Aunt-in-law Margie left a most beautiful message on my phone. It touched me deeply. Part of what she said is, "People like you don't get cancer, people like me get cancer." And wouldn't you know it? She did. Just over a year later she died. People get cancer, anyone can get it. The experience can be fast and final. It can drag on for years. Cancer is a gift, it's just one of those gifts no one wants.

I already miss Margie. I loved her no-nonsense approach to life. She was a gifted kitchen and bath designer. She was among my very few clients back in my website designing days. She gave me her ex-husband's mother's wedding dress when I married her nephew. I can't believe that she's gone and I'm still here. I'm glad I listened, and gave her a call days before she left us. I would never have guessed she was leaving so soon—she was so lively on the phone. But she was asking not to suffer, and sure enough, she didn't have to.

Brandi's Top 10

I like to make lists. See here: I've made 3 "Top 10 Lists" for 2009.

Top 10 things about getting Leukemia:

1. It's a rare opportunity to rest
2. I know who I can rely on
3. Seeing friends and family shine
4. Warm Blankets
5. I know I am loved
6. It's like attending your own funeral
7. Letting go
8. Witnessing amazing efforts
9. Appreciating everything
10. Presents!

Top 10 books I've read this year:
(In no particular order)

1. Gulliver's Travels
2. The Count of Monte Cristo
3. Call of the Wild
4. Frankenstein
5. Robinson Crusoe
6. Peter Pan & Wendy
7. Slaughterhouse Five
8. Love in the Age of Cholera
9. The Left Hand of Darkness
10. Poised for Grace

Top 10 movies I've seen this year:
(In no particular order)

1. The Madness of King George
2. Son of Rambow
3. Let the Right One In
4. The Fountain
5. Who Killed the Electric Car
6. Never Cry Wolf
7. Crash
8. Synecdoche NY
9. Juno
10. Star Trek 2009

Honorable Mention: Letters from Iwo Jima and Flags of Our Fathers.
The best thing about 2009? It is over. (Can I get a "whoo hoo!").