Before I begin this blog post I want to do a short public service announcement in regards to a book that just was released this week. I first met Jarem Sawatsky when he was hardly an adult but I could sense this young man had much to contribute to the world. As you know from my own journey, life turns out odd sometimes. Unfairly so, some would argue. One of the voices that I listen to and respect as I strap in for this great adventure I am on is his. He, like me, also has a terminal illness. He also has a similar value base and I have appreciated his perspective. You might too. Check out this link by clicking on the highlighted word and it will take you to his latest book. The book is also found on American, Australian and British Amazon sites, as well as a number of other readers if you prefer. It is selling very well already and I recommend it to you if you are caring or working with someone who is living with a terminal or chronic illness or if you yourself are. Thanks for considering this book.
Today’s First Reading from Deuteronomy 26 in the Canadian version says that we are claimed by God as treasured people. In some ways, this is a perfect lead in to what has been rumbling around in my head since last night. Many people are curious about an update and I have delayed in giving one, mostly because there is not one. However, for my own sanity’s sake I must respond. As the doctors have always said in this past year, the tumours are continuing to grow. The ones in the lungs are still fairly tiny–less than a centimeter. The ones in the liver are growing a little more quickly and are beginning to cause some discomfort but I am currently on no medications because I simply manage the short-lived aches in various ways. No new growths were found elsewhere. My major symptom continues to be fatigue which limits my outings and responsibilities in life. I try my best to manage the demands on my life. That is the quick and easy update. The more complicated thoughts are below if you care to read on.
I cannot tell you the number of people who have asked me in the past few weeks if I am in remission. First of all, I understand the message behind the question which has to do with the fact that I am fully engaged in life from an outsider’s perspective and sigh, yes, I still look so darn good. I know it is confusing. Secondly, I am really grasping for grace here so that I may be one of God’s treasured people and not a lump of coal. I do not mean to be offensive or hurtful but rather instructional and honest. Please bear with me as I try. I really should have written this earlier in the day.
Please do not ask me a question that you do not want to hear an honest answer to. Am I in remission? That has a 50/50 chance of going well. Can you handle the answer that has never changed? I have tried to be honest and vulnerable all along but I am finding that people do not retain or take in what they do not want to hear. Cholangiocarcinoma has a very low survival rate. I was told from the very beginning that I would probably not survive. I have never been in denial about that. Yes, at times my world is incredibly surreal. I always thought that I would live until I was 99 or so. I am in pretty good health other than this crazy cancer issue, ironically. I have always believed that miracles happen every day but my definition of a miracle may be different than yours. I am not less of a Christian or a believer because I say that the cancer will kill me. God can do an 11th hour save. I am open to that. You can pray for that but please know that standing with me in my reality is much more helpful to me. If you do not want to know the hard bumps of this journey, please do not ask a question that will burst your protective bubble and make me feel like a villain. The answer I give is that I am not in remission. In the awkward silence that follows, I try to look compassionate as the other person’s face crumples. I keep wondering if there is a better way to handle that question but I feel very much the same way as when people would congratulate me on being pregnant when really I was not. One way you can help someone is to follow his/her lead. If you need to ask questions, ask yourself how you would feel if you had to answer something. You may decide it is an off-limits question. We all say awkward things and I know this so I am not judging. I recently told one of my favourite seniors that despite the fact that his mind is going he looked so strong. I hated myself the moment the words were uttered and I have yet to apologize.
As I tossed and turned in bed this week, I thought about how I feel like I am graduating from high school again. I loved high school–almost everything about it. I loved the academics. I adored the group of friends I hung out with, many of whom I am still connected with today. I was not super popular but I was involved with many amazing opportunities. When graduation came and the valedictorian stood up to give the address, I was a mess. He was and remains someone who I care for and respect who I know would make me laugh and cry. The reality that this part of life was ending and a new one beginning was exciting and yet I wanted to cling to the known pieces that I enjoyed. I was happy to leave but sad to go as someone wrote in my yearbook. That is precisely what I am experiencing now. I am ecstatic about the life I have had and having done a graced history more than once, I am ever so grateful about the many blessings and challenges that I have endured because I see the connection between events that most people miss. I am sad to go but I am happy to leave. I am not afraid of death. I want to be with my Beloved. When I read the Narnia tales years ago, the rapture scene stuck in my head. I cannot wait for the day when Heaven opens its door for me and I see all of those amazing people who have gone before me. Strangers who may have blessed or been blessed by me may be part of the welcoming crew. Grandparents that I have never met and those I have will open wide their arms. Relatives, friends, mentors, colleagues, loved ones, and yes, perhaps even those that I never liked on this side of Heaven will celebrate my coming Home. All those angels and saints who have protected me and interceded for me will now rejoice in my joining them. I cannot even imagine what it will be like to meet the Trinity and Mother Mary yet I can tell you I am overjoyed to think I will. I suppose I presume much on my part–and I do not mean to offend those who have a different concept of what happens but my God is not a Wall-Builder.
Christ worked for three years in the role that people would know him as for centuries. His short life of 33 years was sufficient and fully spoken. A dear friend used to sign her correspondence to me with blessings until the word of your life is fully spoken. Several people have said that I still have work to do and so I cannot be dying. Clearly, we humans are slow learners. I have had two more decades than Jesus and somehow I suspect I am only doing now the real work that I must complete. I have given everything to the Trinity over the years, as I should have. I am simply returning what was generously given in the first place. As I have taken a leave from work and stepped off each committee one by one, I have let go with as much grace as I can muster. The work I must do is both inner and outer. I am listening carefully and trying to make wise decisions. I embrace the Principle and Foundation that I first read over a decade ago. In sickness and in health, long life or short, I long to serve Christ. I will not cling to this life when Heaven is my Home. The work that I am doing on myself is healing. The service that I render is still relevant. I am a treasured person and I will share that wealth with those who need it while I can.
At the moment, I am managing reasonably well without chemo which may or may not prolong my life. Chemo is not a cure for me. When I started chemo over a year ago, I was NED – no evidence of disease – after a remarkable surgery which involved dedicated professionals before, during and after. At the end of the six months of chemotherapy treatment, not only was there evidence that the cancer had returned but it had metastasized. Almost 14 months ago, I was given a year to live. I had always told myself that I would surpass the grimness of those odds and continue to live an amazing life and serve an awesome God. I had also told myself that I would do chemo once because cholangiocarcinoma can be resistant to chemo and clearly in my case, that was true. Why put those toxins in my body and risk dying of chemo instead of the cancer? I have declined further treatment at this moment.
My gratitude is overwhelming some days as you know if you have followed this blog. Tears flow often and freely at the littlest miracles. I am often blessed by those who are also living with cancer/those who are cancer-free now and who understand in ways others do not. Some were not in my core group prior to becoming ill. God sends the right people at the right time usually. Those people who are in this with me and who do not know the adventure firsthand but are real and vulnerable are such a gift. Those who do not quite know how to manage their own fears and struggles but keep showing up anyway, I thank you. I know that you hate stumbling over your words and feeling small and helpless. You.have.a.place.too. Everyone who falls on the continuum has a place. You strangers who read this and comment with affirmation and prayers – I simply have no words to convey my appreciation that you would care to do such a thing. I must only lift each one of you up in prayer in return, with joyous tears. In my daily prayers, I find myself both morning and night, giving thanks to those who pray for me and who have accompanied me during the day in whatever small way. I do not always have the energy anymore to respond to emails, calls, or to spend time with everyone but none of you are very far from my heart.
This post has been more vulnerable than any I have written in awhile. More could be said but I am tiring as the hour is late. Treasured people, I entrust it to you with faith and courage.
What do you do in awkward situations when you want information but do not know exactly how to ask?
What thoughts do you have about Heaven?
Treasure-Maker, I thank you for the many gifts of my life. Create in me a heart that is kind and gracious for the remainder of my time. May I be a gem to those who I am with. Sand away the roughness and polish me until I shine brightly for you, dear One. Amen.