Though it seems like so much of my life the last few weeks has been spent in front of a computer writing or researching, I have enough people asking how things are going that it is time for another update.
My initial plan for dealing with the drug denial involved gathering as much information as possible. I began by requesting a copy of the drug denial from my file, a document that actually had to be generated because it wasn't in my electronic file. One of my major frustrations was my inability to find an appeal mechanism within BC Cancer. Then I started to try and grasp the structure of the Ministry of Health, and the various agencies and Authorities beneath it looking for a patient advocate. So began my voyage into the world of health politics, oncology medicine, and agency administrative policies.
I realized that I had to become a specialized politician, doctor, and lawyer. Why can't I just be a patient? Thank you Andy H, Cynthia, Wendy, and Gayle for your invaluable assistance in making sense of this mess.
With a plan in hand I contacted my MLA, Honourable Jagrup Brar and my MP, Honourable Ken Hardie. Meetings were set up with both. And my advocacy had begun.
My meeting with Mr Brar was scheduled for immediately after a Thursday morning AlAnon meeting, so I wore my suit coat for the first time since Yvette's funeral to get myself comfortable with the jacket. I thought I might have to administer CPR to some of the meeting members. They didn't know that I even owned such a thing. I did have a warning from my dear friend that I could not wear my "cancer cap" to the meeting. So much a part of me that I didn't even realize I was wearing my red toque.
Arriving at the office I had a couple of forms to fill out to allow the office to access my medical records. While I was filling the forms out, the first of several God moments occurred. The EA (executive assistant) is a cancer survivor - right off the bat I felt like I had someone in my corner. And then I reached into my pocket for my wallet to get my Health Number and felt a slip of paper. I pulled it out and realized that it was a letter from Yvette. Written in the early years of our relationship, it was like she was standing there whispering in my ear, "You are so much more than a cancer diagnosis, Angus, it is going to be all right." It wasn't so all right - I was busy hunting for a Kleenex box - silly leaky eyes.
Ushered into a conference room, I took the opportunity to remind Mr. Brar of our acquaintance twenty years earlier when he ran the entrepreneurship program, SEEDS, that launched my web developer career. Stating my case succinctly, I asked for his help in having my case reconsidered. He told me about several other successful cases that he had been involved in and talked about the difficulty of funding health care drugs. His curiosity abut the details of my case led to our ten minute interview stretching to thirty minutes. At the end he asked his EA to pursue my case and help me getting my denial reconsidered.
As I reflected leaving his office, I have a unique set of relationships and abilities that allowed me to be pretty persuasive. These include emails from the Vice President, Oncology from AstroZeneca (makers of the drug that I am looking for) as well as information from the approval process with the government (CADTH and pCODR). I'm also involved with Lung Cancer Canada who have provided me with some excellent material, knowledge, and contacts.
Over the course of the next few days my case was advanced to the Ministry of Health and referred to the Patient Care Quality Office. Part of the challenge for me had been sorting this out. I was aware of the program and legislation establishing it. But BC Cancer Agency stands outside the regional health authorities and didn't seem to have its own office. As it turns out the BCCA is under the jurisdiction of the Provincial Health Services Authority and their Patient Care Quality Office is the appropriate one.
My case officer contacted me on Tuesday (February 11) and asked me first if I wanted to continue dealing with the MLA's office as an intermediary or deal with her directly. I will deal directly but I will take the responsibility to keep the MLA informed. She also informed me that she was not a clinician and would not be able to directly reverse the decision on the denial of the drug. She outlined the process which will likely involve having a clinical leader speak to me about the rationale for the decision, hopefully within the next two weeks though it can take up to thirty days for a mandated response time. They then have an additional ten days to communicate the decision to me. The clinical leader is the one who can reverse the decision.
While the process appears to be protracted I am feeling that my concerns are being heard and it is moving in the right direction.
In other news, it's been a bit of rough week. For the first time I was faced with a medical decision that relates to my prognosis and terminal status. Not exactly a feeding tube but it was a milestone in my journey. I don't know whether to think of it as awake up call or quite what.
Simple enough challenge. Back in October I had a week or so with fresh blood in my stool. I mentioned it to my oncologist. He recommended that I ask my family doctor for a digital exam and maybe followup on an earlier question that I had about a recommendation for a three year checkup colonoscopy. My GP did his digital rectal exam (which I keep thinking should lead some sort of computer joke), telling me that while I had hemorrhoids they weren't bad. He made the referral to a gastroenterologist for the colonoscopy. I got the appointment by phone. But when I went in to pick up the paperwork, I was surprised to learn that it was for a consultation, not the procedure. When I stopped to think about it, the idea of consultation made sense. My case is complicated.
So on Tuesday I met with him. I had my list of questions but he started off with a question. What did I understand of my situation? I told him I had a pretty good grip on things. I was currently stable - no progression on a targeted therapy for lung cancer. Though I had a diagnosis also of breast cancer, at this time it is not considered a threat. The lung cancer though is stage IV. I've been told that I can be on the drug for anywhere from two months to two years and that things will go downhill to death quickly when it stops working. While I'm hoping for longer, that is the most realistic scenario.
Pretty realistic and pretty pragmatic. We talked about what he might find and what would be done about it. With a colonoscopy three years ago there was a five percent chance that he had missed something that we would now find to be cancerous. And in his experience colon cancer is relatively slow growing taking five to ten years to become a problem that needs to be addressed. Colon cancer treatments are very different than the treatments that I am currently receiving. Is it worth it for me to find something that we probably wouldn't bother treating given my lung cancer prognosis? He left the decision in my hands. I have signed the consent form and all I have to do is call his office and book the procedure. He is happy to do it but if it was him in my shoes he wouldn't do it. At this time I'm choosing not to do it.
In my mind, it boiled down to acceptance. Do I want to deny that my lung cancer is terminal and proceed like I'm going to live for a good long time? Or do I recognize that this is an invasive procedure with some risk associated with it that will affect my quality of life for at least a week (prep, procedure, and recovery) and maybe longer. I have chosen to accept that the quality of my life is important to me and that I have a limited time left to enjoy it.
Maybe more instructive than the story of how I ended up in the doldrums of depression is how I moved past it. The full weight of what I was contemplating really came home to roost on Wednesday morning. I literally sat in my chair so depressed I was unable to read or write or make a decision or even move. It was the bluest I have felt in a while. Getting out of it meant I needed to move.
It was a huge effort to get out of the green glider chair and begin to sweep the floor in my apartment. As I did so I realized that I had some things that needed to go to my storage unit, I also needed some kitty litter having run out a few days earlier. Okay I didn't need the litter but my cats did. They would probably appreciate it if I kept the food coming too. So I took the things out to the car and thought "Well that isn't much. Why don't I look in the closet and see if there are other things." I ended up with stuff for the thrift store as well.
After doing my errands, I sat in the parking lot at Costco enjoying my Polish dog and drink, I realized that out in the sunshine of the day my mood was beginning to lift. Rewarding myself with a trip to the art supply store just seemed like a good plan. So motion and reward. Cheap tricks maybe but it worked.
Ironic it might be but the next day I had to lead an AlAnon meeting that I had signed up for three months earlier. The topic? Yeah "Laughter." If the endorphins weren't flowing before, they surely were after a session of side-splitting jokes. (For the record no alcoholics were harmed in the telling of jokes.) Now don't tell me that God doesn't have a sense of humour.
And so once again my weather report is positive. Despite the Vancouver rain, my life is filled with blessings. Long lovely walks and meals with my oldest son who is working in Vancouver for the next three months. A successful little video produced for Lung Cancer Canada on my situation is being very well received. Perhaps most importantly a God who continues to strengthen and guide me, filling me with hope and grace.
My reading this morning from Job 11:7-8 used the words of Zophar to remind me:
Do you think you can explain the mystery of God?
Do you think you can diagram God Almighty?
God is far higher than you can imagine,
far deeper than you can comprehend,
Stretching farther than earth’s horizons,
far wider than the endless ocean.
I had a friend who used the phrase "That's my Jesus." all the time. I actually found it quite irritating. But really that's my God.
In closing I have a favour to ask. I am going to try and transition this email to a "Mailchimp" managed list. If you could go to the following url and sign up it would save me the challenge of proving to Mailchimp that you really do want to receive this newsletter. The link is https://journey.anguspratt.ca/newsletter/signup .
Several of you have complained that you don't see the nice little pictures that appear on Facebook or the website. This move will allow me to easily incorporate them into the letters. It will also help me deal with spam issues as the list grows much larger.
You will have to confirm your subscription to compete the process. Thanks in advance for your help with this.
Thank you so much for your thoughts and prayers, your continuing words of encouragement.