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.