It’s Wednesday. November 5th, 2008. Tomorrow is the Big Event. I’ve been gearing up to it for weeks now. I’m still trying to find the words I need for my speech and I want to pick up a pair of slippers to match what I’m wearing, but pretty much, I’m ready.
I’d been spending time lately sort of planning out the next move for myself. I looked into places that I could visit where I would step into the next stage of healing. There are clinics all over the world that have programs designed for people “living with cancer”. Often they include education about diet, exercise and lifestyle. Sometimes colonics, massage and acupuncture are included in the fee as well, and often you are close to a body of water, or there is a pool, so that the journey toward health is really quite luxurious. It also makes up for the stringent dietary limitations (raw, vegan, wheatgrass) in these places, just in case you were about to mistake the experience for a “holiday”. It felt good to think that I was almost well enough to consider big changes and that I could, perhaps, begin to take some risks: A glass of wine with dinner or a candy bar. I considered that after all the sacrifices I’d made, and all the progress in respect to overcoming this disease, it was likely that my immune system would even be able to withstand a trip to Rajastan or Mexico City. I bought a new camera.
On Sunday night I felt a bit punky. I was tired and sluggish, and for the prior few days had carried around a vague headache and achy muscles. Then I found the lump. It was under my arm, my left arm, the same spot where seven years ago they fished out lymph nodes that would be implicated in my breast cancer. After the initial heart stopping moment, once I’d thought it through with a straight head, I decided it wasn’t a bad thing.Was I crazy? This was a spongy, somewhat painful lump, not like cancer, and my oncologist had not detected it last week when I had a check up, so after a few deep breaths I realized I was overreacting, and cancer was probably only a remote possibility. In fact, a ridiculous and paranoid projection. More like an infection. Yeah, that’s right. Whew!
Monday I had a CT Scan and blood tests. Tuesday, late afternoon, I saw the doctor. We looked at the blood tests, and the results of the CT Scan from the day before. It’s the breast cancer, he said. We’ve got to hit it hard with a big hammer, or you will not live past February.
Whenever they say stuff like that, I always think how do THEY know when I going to die? What kind of arrogance gives them permission to play God? But this guy, this oncologist, and I have been to war together. This is not just some cold, analytical response from a relative stranger. This man has become my friend. My family. I said please don’t pump me full of drugs and diminish the quality of my life just so I can squeeze an extra month or two out of this life. Please look at me and tell me I can actually kick this thing. Tell me the truth about my chances of survival. I am not going to go thru with this and die from treatment. With tears in his eyes, he turned his swivel chair to me, and looked me square in the face. You don’t want to die, do you? I shook my head. Then, let’s get started! We shared a slow smile.
I’m not sure if he answered my questions, but I keep seeing that slow smile, and that is where my trust lies. I trust the twinkle behind those eyes and the warmth that embraced me as his head moved up and down in a “yes”. Ok. I’m going with him on this. I have to. So, right here, right now, marks the beginning of new hope. I am going to kick this cancer in the ass. Watch me.
I went straight to Walter’s office. Dr. Lemmo. Talk about family. I just may be the luckiest person on the planet. You cannot imagine the amount of love surrounding me and my family. Honestly, think of what you can do with so much love. I do believe one could even…dare I say? heal. I bet that much love could even make a miracle happen
But no matter what happens, there cannot be a better feeling in all the world than knowing you are loved. If this cancer wins, and I do not survive this challenge, please know that it was just my time to go, because love of this quality and duration is so beautiful and so powerful that it can’t be wrong. There are things we just don’t understand. Isn’t that why life is considered a mystery in the first place?
So, Walter. He and I are working out a support plan for when the chemo begins. I will let you all know the details once it’s worked out, based on the kind of chemo, and the amount of the dosages. There is some difficulty getting BCMedical to approve payment for one of the drugs my oncologist wants to administer, but I’m going to try not to stress out about all that right now.
And, please don’t forget the event on Thursday night. It will be so nice to see you there. I’ll be that woman in the room that’s shining. I’ll be basking in the light from all your love.
Hi.
I recovered from surgery, to take out the old port-o-cath and put in a new one.
Despite the five cms of plastic tubing left in my body, two huge new ugly
scars, and pain, the likes of which I have not experienced since my mastectomy.
My blood results added insult to injury. The tumour markers have tripled. The liver enzymes remain troublesome. Running
behind schedule, my oncologist nonetheless closed the door to his office, in a
rare gesture that would suggest a surplus of time on his hands, and gave me the
goods: Nothing is working. What once worked has stopped working. He has taken
me off chemo, and wants to check the numbers again in a month. There is really
nothing more he can offer me, but he would like the month to think it through.
I gave him a print out of a study that Dr.Lemmo found on the Internet that we
thought interesting. A rather controversial treatment that reintroduces
estrogen to the highly estrogen receptive body. This is like giving sugar to a
diabetic. Nevertheless, in women who have built a resistance to the estrogen
blocking drugs that are becoming common in breast cancer treatment (hello!)
there seems to be some progress in halting tumour growth for short periods of
time. He read the whole thing, another rare gesture from a very busy and
brilliant man who seems, at the close of his career, to have seen it all
before. Yeah, he's heard of this, although he hasn't done this procedure
himself. Seems he recalls hearing it is very hard on women. Almost more than
chemo. But, hey...nothing else is working. Maybe we'll try that. Let me think about
it.
I took the reports and that information to Dr.Lemmo, where I often get the
whole hour and more when the door closes, bless him, and we talked it through.
The Ukrain does not work as well without chemo. It's not strong enough by
itself. That is something we know already, but he's been hesitant to stop it
completely, because the numbers are climbing so quickly as it is. After a long
conversation about things, though, he and I decided that we would stop Ukrain
for the next two weeks and assess the new blood work that is due to happen at
that time. I am presently injecting myself with a vaccination that Dr.Lemmo
designed that works with the same bacteria that exists in breast cancer
tumours. A kind of homeopathic treatment. Like heals like. He agreed with me
that this healing journey I have been on has come to the place where one must
choose to do things never considered before.
Frankly, I feel like I have lost a kind of faith. A belief that I will heal
someday. It's gone. I cannot find it. I'm burnt out and exhausted with chasing
new treatments and miracles. I don't even know what I believe anymore. I know
that I cannot continue to live this way. Keeping myself alive running from
treatment to treatment is no way to be. I am consumed with appointments and my
poor body is overloaded with potions and pills and procedures. It becomes
ironic to think of my diseased liver trying to handle the amount of chemicals
it must process to heal! That's simply crazy.
This is the point in the illness where a person goes to South America to find a
faith healer...or travels to an ashram in India where it is known that a guru
has cured cancer in monks...or flies by plane and then truck and then boat and
then burro to the small village where one can stay at the only hotel and wait
for an appointment to see John of God. Really. I have to start thinking about
these things.
There's more: After several months of intense treatment, my blood cancer was
successfully controlled by a drug called Rituxan. My oncologist was thrilled,
because blood cancers are tricky, and with the breast cancer as well, if we'd
been unable to arrest the movement of the blood cancer, it would not have been pretty. The BC Cancer Agency pays
for this very expensive drug for two years of maintenance. That means that
every three months they give the hospital $3950 for me to have a small bag of
liquid dripped into my veins. My last treatment was at the beginning of
September. Just as I was about to get hooked up, the chemo clinic accountant
that arranges for payment of treatment came up to me, and informed me that
there was no Rituxan anymore for me. It seems my two years are up, and the
Agency will not pay. I called the Union, and the policy I have paid into for
more than twenty years will not cover it. I tried my insurance company. Then I tried BC Medical. No go.
Meanwhile, my oncologist became increasingly concerned that I was
missing this treatment, and asked me to please put it on a card, or borrow the
money or SOMETHING, because if I were to stop these treatments, and my blood
cancer were to flare up, I would be a goner. Period.
I told Dr.Lemmo about this and he agreed that it would be a very bad thing to
stop Rituxan at this point. He suggested I turn my attention to paying for that
rather than Ukrain, as it is a priority.
He told me not to worry, we will make it work. I also waited for my
oncologist to return from his trip to Europe, and reported this to him. He said
he would personally go to the BCC Agency himself and plead my case next week
when the big poohbah returns from HIS holiday. As it stands, I will need to be
reimbursed for the payment I put on my card. I can no longer pay the minimum
payments as it is. With close to $4000 new charges on the card, I am hooped,
and hope The Society can cover this until we know whether or not we can get it
paid elsewhere.
These guys are so awesome. These doctors on my team. I have surpassed their
expectations for survival. They really care about me, and consider my situation
something of a miracle. Oh, how I wish I could FEEL this again. This great
gratitude to be alive. Please don't misunderstand. I am not blase. I am not
cynical or bitter. I am not UN grateful. It is just that I am having difficulty
mustering up the joy. Or something. I'm tired. I hurt. I'm not having fun. I
forget things. I'm sad. I just want to sleep. It's so stressful. Imagine a time
bomb living in your guts. What if I get an infection? What is that pulsing in
my chest? Is that new? Why does my head hurt? Is it a simple headache or do I
have a brain tumour? It's just a never ending litany of aches and pains and
fear. Why am I so afraid? Even stupid people die. They can do it. What the
hell's the matter with me?
I think sometimes about all the things I still want to do in
my life. I said to Lar the other day that maybe we should just sell it
all...oh, maybe we could end up with $25,000 or so...sell the car, the vintage
clothes, the costume jewelry...all the junk around this place...and buy a
ticket to Paris. Well, wait a minute...here's the dream trip: We go from here
to Montreal to spend time with the kids, then to NY to see a whole whack of
great theatre. From there to Paris and then to India where I wouldn't even
worry about germs. After that, I could come back here and wait for the end. Ha
ha. Larry and I laughed. So hard!
But then I became really sad. I always thought I would do certain things. I
can't believe that I am not going to live in NY again...or walk through India.
I've been planning to get to India since I was in high school! I think about it
all the time. I just realized that I may not make it. I just "got"
it. I may not get there this time. I am so devastated to think that my time
here on Earth is shrinking. And so quickly. Please do not think that I am being
maudlin or overly dramatic. If I can't whine and complain to my friends, then who can I
ever be honest with? Yeah, I'm complaining. I haven't done that before. I
haven't complained about this cancer. I've been hopeful and joyous and generous
and suddenly I am completely empty. I've had nothing but gratitude and a sense
of abundance. Where did it go? I don't know what happened. I've been trying to
figure it out. Was it that my ex-husband died? Or that two of my kids slipped.
Again. And started smoking crack? Is it the constant financial struggle? The
endless stress and worry about rent and food and gas? Maybe it's the election.
Global warming. Darfur.
I must find the inspiration to live that has brought me this
far. I've lost it and I must find it again.I have so much to do. So much to
finish up before I leave this fantastic world. Most importantly, I want the
Babz Chula Society to work...for me...but BEYOND me. There are actors, artists
that we know that are right this minute suffering the fear of not knowing how
they will afford to deal with their illnesses. We know these people. If you
have not heard of their illness yet, you will very soon. I want to recover to
the point where I can be influential in helping others get thru their
challenges. I cannot give up now. Not after all this, and after all the love
and support that's been shown to me. I must survive and be able to do something
for others, or it is all for naught. It's not enough for me to get better and
that's all. I want The Society to exist long after I am gone. And I cannot do
this alone. You need to know how important this is...to me, yeah...but to YOU,
too. None of us know what is going to happen. My friend, in Toronto, told me
about this guy she knows who has survived AIDS since 1981!!! He's been close to
death many times, but he always pulled through. Last week he died in a car
accident.
Maybe you guys are different than me, but I don't think so. I've had a pretty
amazing life and a fabulous career. I've had the privilege of doing amazing
projects. I've maybe never made a lot of money, but often I've made
"good" money. Good enough to raise five kids mostly by myself, and
still have a car. Good enough to be able to take the kids out to dinner and a
movie at least once a month and that's no small change, folks. True, I have a
good eye, so I've always been able to buy make up and cool clothes. There was
always a TV and a sound system in the house. And after rent I still had enough
money to contribute to charity and be able to help those friends of mine who had
less than me. My kids could bring home a friend or two every single night and
there was always enough food on the table. I was even able to buy flowers for
the house once in a while. For me this meant success. I don't think I ever
really envied another's life. Oh, sometimes I would think it would be nice to
be younger or prettier or rich. Sure. I'm not untouched by envy but mostly I
always felt lucky in my life. I mean, I would look around at my world and be
stunned by the abundance. Most of the time. And still. I am forever humbled by
how much I have.
I can say that I'm not finished here in this world, and list
the things I still want to do, and plead my case until I'm hoarse, but there is
no deal you can make with no one to get to stay here if your time is up. And
there's no way of knowing when it's up until it is. So the person who cares the
most about whether I get to stay or go is me. Just me. And I'm just an ordinary
little human trying to hang on to life and fearing the moment when I will have
to let go of it. Just another ordinary little human completely wrapped up in me
me me and wanting more. But...The Babz Chula Society...well, just think of it.
I am not sure what is going to happen... what kind of treatment will be next
for me. I am not sure what kind of funds it will require. I hope we can keep
this society going. Asking for help is difficult and humbling. But one cannot be apologetic. There’s nothing to be ashamed of. It’s a simple fact: Artists do not often come to a crisis in
their lives easily. There are seldom
resources to cover the financial burden.
Think about this: Art is what
outlives us. It is the statement that
remains when our society is long gone.
When we are dust, our art will remain as our identity.
Why then, is the artist so dishonoured and disrespected? Why must the artist struggle to be paid what he/she is worth? When illness or accident befalls the artist, it often results in an entire lifetime of savings being eaten up trying to survive. I know this first hand. Except for the small percentage of artists that have found financial security thru their art, this situation is universal. My hope is that the Babz Chula Lifeline for Artists Society will continue to exist long beyond my lifetime, and that those very people that write the songs, and the ones that sing them…that our playwrites and our actors…our cinematographers and the artists that paint…all of them…get the respect they deserve. My hope is that the Babz Chula Lifeline for Artists Society can lead the way in generating support for those very people that have given their lives to creative expression.
Hi. This is me. Babz Chula
speaking. I’m curled up with stomach
distress from what I imagine chemo does to the intestines and general digestive
tract. Yet, despite, and in spite, of
stomach cramps and chemo and cancer and all the discomforts of sickness and old
age, my spirit is soaring. And this is
because I am buoyed and bouncing from your good will and your
unabashed…well…love.
I don’t
know if any one of you can imagine what it is like to be me right now. I mean, on paper this situation looks fairly
dire. I certainly would not have
believed you if you told me a year ago what my life would look like today. And as dire and dreary as it looks in black
and white, you must believe me when I tell you that it is not quite my reality.
Not nearly.
I have a treatment every morning. Three mornings a week it is Ukrain, and on
Tues and Thurs I have an extensive colonic with an implant of coffee and
herbs. Once every three weeks I have
chemo in an IV, followed by two weeks on and two weeks off of a series of oral
chemo drugs. This is all to address my
breast cancer. Once every three months I
have a “smart” chemo drug called Rituxan, for my blood cancer. It is often accompanied by an IgG
treatment. During the day I take as
many as 40 pills, some are medications, and some are supplements. I drink, on any given day, from two to ten
powdery mixtures ranging from greens to various clays.
Every morning, before I leave the house, I
sit in a far infra-red sauna for an hour, and follow that with a cool
bath. I try to do this nightly, as
well. There is dry skin brushing,
supplements, massage, when available, juicing when I’m really together….and all
sorts of small and constant little attentions that healing demands. The difficult part, however, is not
this. It is getting from place to place. Somehow, this just takes the jam out of
me. All the driving. The getting in and out. Going up stairs and down. The waiting, the gas prices, stupid drivers,
and road construction. I often weep at
the wheel….even at the simple thought of being home, in my bed. Please understand, I never weep out of self
pity. It is always sheer
exhaustion. Tears of fatigue. More like sweating is to exercise. I just cry.
For all of it.
Often I nap when I arrive back home, but
eventually, I get down to what has become the business of my life. Perhaps some day soon, when it becomes
clearer, I will be able to call it a livelihood. Right now it is the period of transition that
comes with the Transformation that this challenge of cancer demands. I often wish I could pick and choose the
things…the qualities.. .the values…of my former life. I wish I could keep some things and discard
others. But the reality is that it all
goes up in the air, and you don’t get to keep the things you like about
yourself, and lose the things you don’t.
It all goes up in one big smokey cloud, and all you can save from the
fire are bits and pieces…often not even things that seem to fit together.
I get thru my afternoons doing the Babz Chula
Society business. I receive another very lovely letter of support, and I maintain
that my life is the luckiest kind one could ever wish to live: A life busy with the business of healing, and
currently filled with letters of support and loving thoughts from people all
over the world.
Throughout this week, of all weeks that have
come before in my 61 years, I’ve been deeply stirred by a kind of magic.
Magic, but real. OK. Magic
realism, if you like. It has crept into
my world. Many candles are burning in
our home and flowers are arranged in gorgeous array. Several strangers and
casual acquaintances, as well as dear old friends and family, dear family,
have come forward to offer support.
Miraculously, one of my liver enzyme counts,
raging some 400 points above scale a mere 14 days ago, has lowered to just
above 200. And my sweet boy, my lovely youngest male child who suffers
currently in respect to a dark and ugly episode from his past that has returned
like a recurring bad dream, most amazingly has found a kind of grace and
dignity as he faces its evil memory. I
am floored by what I believe is love, manifest.
I mean, despite and apart from the powerful
dose of chemotherapy I received at 2pm this afternoon, I am floored. That is,
laying on the floor, unable to move, except for my fingers clicking along as if
on automatic....and, I guess, my brain, for it is all true what they say about
chemo and brains. Stupid. And tired. Stupidly tired. A bad combo, this chemo brain.
So. This is what I mean to say: we never forget an act of kindness. Even if we cannot quite place the face or
circumstance, our body memory has registered the gesture and it is in a
sparkling moment of reflex that one recognizes what is familiar. I must remember that wanting credit for these
gestures dilutes the power that they generate, and neutralizes the very act of
generosity itself.
The ego just wants to win. No matter what. And it will win at any
cost, even by trickery or cheating. No qualms. No conscience.
Our hearts swelling with pride at our own goodness is really nothing more
than smug satisfaction. There is a big
picture. A really big picture. It is not about good or bad, or right or
wrong. It is just this: Nobody gets to go home until we all get to go
home.
There's no first place or last place.
No win or lose. So, I think, that
if l am able to get there at some point that I should not worry about whether
or not I am "well enough" or "strong enough" and that I
need to simply get to India as soon as I can, or Southeast Asia, or Eastern
Europe or Main and Hastings, and that, I must begin to speak to and do for
others and attempt to inspire in them some sort of generosity...small gestures
that move out and up...tiny acts of courage and humour...moments of lightness
and mirth. This world can seem so damning. So dreary and sodden. Healing is needed in every corner. A finger to point the way home. A light to shine upon the path.
I am so often lost and alone. So often swooning in fear and terror and
lacking in faith. I pray for the strength to leave my ego behind. And it
is surely strength I need, because the ego is a muscle to be thrown down and
wrestled to submission. I ask to be
spontaneous. To simply trust my
impulses. To "do" and not to
think about "doing".. I pledge
to you that I shall set aside practice time each morning so that I may become a
gentle, peaceful warrior, skilled and adept at service. For one day it will be my great honor to
support you as you have so generously given support to me.
I am so grateful for my challenges. They inform my life. They make it worth my living it. They give the inevitability of my death
great value and meaning, Unlike before,
when I chose not to contemplate dying.
These challenges bring color to my cheeks and
a hearty robust contradiction to all the things that cancer threatens to do to
a body. I laugh more than ever. Deep laughter. Belly laughter. I cry, too.
More than ever. Deep crying. From my soul. And more often than ever for the other
guy. Really! This is truly the blessing. I just find myself losing the ability to
separate myself from another. From the
"other". Just more looking
out. Less "me me me".
I used to spend more time looking at myself
and now all I can do is look at you. You
are so beautiful. I cannot turn
away. How can I possibly stop looking at
you? I love you so dearly.
And I
thank you for the all the beauty you’ve brought to my life.
Babz
Chula