In 5 Years Time

If you have seen the movie, The Truman Show and can recall its ending, you might be able to savor my state of mind mid 2011. After my last dose of methotrexate and bilateral hip replacements I bumped into the seeming end of my cancer experience and discovered a door leading to what? I didn’t know and barely dared to imagine. 

Traditionally, (cinematically, literally, theatrically), the cancer patient story, much like the Cinderella story, has but one ending. For the latter it is "happily ever after. The end." For the former it is, "and she died bravely and gracefully surrounded by her loved ones who will carry on without her. The end."  But what about the cancer patient who doesn’t die, who breaks with tradition? Where does her story go when cancer doesn't end in death? 

During treatment I searched high and low for the survivors of adult onset Acute Lymphoblastic Leukemia, they were not easy to find, not readily discoverable. Unlike Breast Cancer survivors my leukemia chemical brothers and sisters were either nonexistent or clandestine.  3 years out of my trial I can tell you where they've gone. They exist in the silent awe summed up thus: My God, I can't believe I am still here. 

We grocery shop, looking over our shoulders. Remembering the stares and the fearfulness our skeletal bodies, moon-faces, masked and bald-headed cancer patient selves inspired we want to be sure that no, no one notices us. No one can tell where we've been, what we've endured. We fold laundry, or scrub a toilet and remember how impossible these mundane tasks would have been not so long ago. We wake up, blink once or twice and wonder, cautiously and ask, can it be true that I have survived it after all? Then toss salt over the shoulder and spit for good measure. Humbled and quiet, we don't advertise our whereabouts lest the eyes of fate or the play of lila fall on us again and take us for another spin. We get on with life knowing that time's too short to relive the hard parts. 

But oh. Oh how during my trial I wanted proof of an actual human being living life after cancer treatment, free from pills and doctor visits, and tests. I wanted someone not slightly further down the trail but rather on the other far side of the mountain. A guide who never came my way. The Dana-Farber treatment protocol was too new and me and my fellows, even the doctors and nurses were left to find our own way. I owe a debt to my chemical brother Mr. Gardner who, although only a few months ahead of me, stopped what he was doing, forgot his own struggle, and took a few panicked phone calls one July.

For a while, after I finished, the hospital would call me to inspire and cheer up the incoming freshmen. I met several brave souls and guided and consoled and commiserated as I could. But the further I moved from treatment the more hollow my advice sounded. Sometimes it was because every treatment is unique to the patient. Sometimes it was because we were on radically different tracks. Mostly because I realized that even though I was living I could offer no guarantee. And also because as the days went by I began to forget the details. Increasingly it becomes: It is as if it never happened to me. 

Were it not for the scars: Three holes in my arms and one in my chest where PICC lines and a central tri-catheter once received poison and electrolytes and saline and platelets and gave and received blood. A caterpillar like scar on my chest from a failed port-o-cath, and a deep circular mark at my right collar bone where the central catheter had been eased down into my heart via the Superior Vena Cava and also exited out of my chest and attach to the port. Two oval shaped burn scars from an unfortunate incident between my ego and a kettle of boiling water. Two shiny new hips belonging to one Dr. Momberger and racing stripes across my hip creases. My right shoulder remains collapsed, necrotic, and malformed. Not weight bearing I am compelled to live with the deformity and dull pain and forego surgery until absolutely unavoidable. I can still use it after all. That leaves a couple compression fractures in my spine that irritate from time to time. I am profoundly aware that my body is not what it was. My days of yogic contortions are behind me. My stamina is diminished. My vanity stings.

These days all the daily habits of normal living traverse well worn grooves and dominate my mindscape. The specific events between November 2008 and June 2011 have been filed under “exceptionally difficult and unfamiliar events best forgotten.” And so I, the human being well on the other far side of the mountain, am not a very useful guide to those on the outset. After watching many like me pass away, I realize that I represent an idea, a possibility, but not a guarantee. 

I continue to practice the lessons learned from those years of pain, uncertainty, and powerlessness, and have curbed the tendencies that caused me to explode in 2008. I am happy to report that I am not living 3 lives concurrently, just one. And even though I always want to say yes, no matter the load on my calendar, from time to time I manage to say the holiest, sincerest, gentlest no. I remain mindful of grief, and do not allow it to consume me. I eat.

Today marks 5 years of remission. In cancer folklore this means I am cured. So, now, can I describe the life of the cancer patient who didn’t die? On the outside it looks a lot like any other person’s life. Who knows what history or loss any given person is carrying around, right? On the inside it is humility, gratitude, forgiveness, and grace and all the petty stuff that comes with being a human, and alive.

And every day I say, My God, I can’t believe I’m still here.

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.