It has been about a month since the clock in my head began to tick loudly. I am not sure if it started with my party, the turning over of yet another calendar month, the beginning of good-byes, or a number of other realities. I do not always hear it but when I do, I feel a certain anxiety. My time is running out with every dawn. I am grateful for each new day while at the same time, I know that as each one arrives, I draw nearer to my end here on earth.
I spoke of this with my social worker yesterday in general, but there are a lot of specific issues that need to be dealt with, such as finally doing my taxes today and wrapping up some business in this regard by paying off an ongoing learning loan that was supposed to be paid back over the course of a decade. I do not expect to file my own taxes next year and want to ensure that things are in order for my executor. I may still be around by tax deadline next year, but if this year is any indication, I may not file on time.
As I woke up yesterday, I was aware that what I really wanted to do was stay in bed and read for an hour but that darn clock resounded in my head and I hopped out of bed to do a number of other more important things. I will have time to be leisurely but right now I feel the pressure of responding to so much. I am behind on thanking people from last month’s party and that is on my to-do list this week. I have a number of projects on the go that need my attention. I must find a place to live that does not have stairs. I want to figure out travel plans for the summer. The list is lengthy and no one can really help me with such things.
This morning upon waking, I decided it was time to tell people my diagnosis–very few people who are not medical folks know outside of my family what exactly the rare form of liver cancer is. Rev up your search engines, folks–I have cholangiocarcinoma or bile duct cancer. I encourage you to not spend much time looking into it, if you are unfamiliar with it. It is discouraging. For those who check the survival rates, I should say that the doctors believe I have had the cancer for several years, despite being asymptomatic until 2014.
This raucous ringing in my head has caused me to consider how to spend my time. I know people want to see me and I am trying to be gracious about that, but at some point, I need to draw my circles tighter. I am not exactly sure when that will happen but I am asking people to be patient with me. I am creating boundaries as I go and I will make mistakes along the way. It is not my intent to hurt anyone. Some days I feel so self-centered I dislike myself.
There are tough questions ahead of me and I think the boundary one is a challenge because I do not have a gatekeeper. At the end of the Dignity Therapy conference, on my way out of the hotel, I spotted a woman who had asked a question of me and I went over to speak to her for a moment. That moment turned into an in-depth conversation about how I saw my last hours. Had I given it some thought, she wanted to know. Yes, I have. I have thought about where and who, as well as what. I have not decided anything but I have given it much pondering. I cannot predict all of what will happen and as the oncologist has kindly reminded me, something else may take me first that is related to the disease such as a blood clot.
Our conversation turned to boundaries and when to decide to keep my circle smaller than it is currently. I want to spend quality time with people who I love and who bring me joy. This is where my heart is heading as I look at narrowing the gate. I am becoming a bit more emotional because of this and so many other issues. The poor man who does my taxes and I usually shake hands at the end of our meeting but I could not say see you next year this time and he understood. He made the mistake of giving me a hug as he left and as we pulled apart tears fell. I am so cognizant that every annual event I do may be the last time I do it or the last time I see someone. I am basket case material lately. That cacophonous clock creates chaos.
Please forgive me as I begin to make hard decisions about how I will spend my time if they do not fall into accordance with your wishes. My energy is still fairly good but at the same time looks are deceiving. I happened to understand this a little better the other week. The TV was on and Ellen was interviewing a man as I cut through the living room to grab something I needed. I heard her say that he had six months to live. I pivoted and sat down on my couch just as she said he looked great. Oh Ellen, et tu? I had to concede though that he did look pretty darn good, just like me. I am learning that this is a compliment of sorts…that the elephant-in-the-room unspoken ending for someone who is dying is not always the intent. It is better than the alternative I suppose–you look horrible! I digress though…bear with me, is what I want to say, and please try to understand if I say no, I cannot hang out with you. Do not assume that it is because I am busy. I am trying to preserve my sanity and my diminished energy.
What you can do when we are together is not always remind me that I am sick. That makes the clock annoyingly loud. I know you are concerned and worried but normal conversation is really appealing to me. I am interested in your life, even when my energy fades and I begin to yawn. Certain people need to stop asking me how I am because it sounds like I am tottering on the ledge of a coffin when they ask it. Other people just need to learn to be like most of my inner core folks and take my lead. The cancer is not the most pressing conversation for me. I am still actively living a-less-full life but a life nonetheless and this is so much more interesting dialogue material.
I am not sure what these remaining months will look like. It may well be a year. I believe in miracles. I do, though they may look different than the one that others cling to. I have long known that miracles happen every single day, in remarkable and humble ways. I think it is a miracle that I am still here today–that despite not having severe symptoms, I found my way to a doctor who took me seriously and sent me to another specialist whose steady hand bought me the gift of these 12 months. I look great! That has to be a miracle, right? I am not in pain–that is a blessing too. I am surrounded by amazing people. Miracles abound and my eyes are open to them. I plan on beating the odds I was given. I know from volunteering in palliative care for many years that I have probably been given the shorter time frame than the longer one. That clock can keep on ticking and I will keep on living….until I am done, and as a dear friend used to say, the word of my life is fully spoken.
How well do you draw boundaries?
What words can you offer a terminally ill person to help them feel alive?
Tick tock, Satan shouts.
You rock! God whispers.
You will die, Satan slithers.
That is a lie, God smiles.
Here is to everlasting life! Amen.
Suzanne, your joy in living life at its fullest, from when I first met you in 1988 to this post, continues to inspire me. The Canadian hockey game we went to in Washington, DC, the fun times with you and Susanne, your joyful presence at Sojourners magazine that year and in many other ways bring life to me and many, many others. Thank you for continuing to do that! Much love, Joe
Ah, Joe, thanks for these kind words. That was a great hockey game…and then there were the Mars bar star-gazing night, the fabulous dinners at your place, and hiding stuffier for Annie to find. So much loveliness. I thank you for your great gift of friendship and for embracing life so fully. You are a joy! Much love right back at ya!
Suzanne your words about needing to tighten your circles make so much sense to me. Actually everything you say makes so much sense to me 🙂
Best wishes with getting done those must-do items on your list so that you can find some time for enjoyable past-times like making those summer travel plans.
Thanks, Monica. I appreciate how many people do find this makes sense which is really encouraging to me. Onwards!
I weep. I weep.
Thank you for your honesty.
Your words will impact many others who walk this type of path alone or beside others.
As you continue to do what is best for you, above all, be gentle with yourself.
Shine on Suzanne. Shine on.
Dear Leah, thanks for your honesty too. I hope my words do encourage others. I will try to be gentle with myself. Wise reminder. Talk soon. Xo.
This has been on my mind for awhile, when best to come to Wpg. We are for sure coming in December to see Ben, hopefully on route to Buceries. I’m feeling a strong need to come sooner, especially to see you, but as you said, you have many people in your circle of friends who want to see you and you need to draw boundaries. You have lots you want to do.
I know you are not sure of your summer travel plans yet. Let me know when you have summer figured out. I also just emailed Ben to see what his thoughts were on me visiting for a week, first week of July or first week of Aug. I would want to make sure though that you were going to be in Wpg during either of those times first.
The ticking clock is making me nervous and I don’t want to have any regrets here….being honest🤔
Love, Karen Sent from my iPad
I am going to send you a private message in response to this, my friend.
I love your posts. Whenever I read them time stands still for me and I disappear into your world. Thank you for opening your beautiful heart to us, it is a privilege to be invited into your space. Remember to love yourself as much as you love those around you and the rest will take care of itself!
Thanks, Barb. These are pretty wise words (no surprise from you!) which I will honour. xoxo
Sue, I was aware you were ill, but not the specifics. My thoughts and prayers are with you. I have a book I would love to send you. With your permission of course. I can’t imagine what you are feeling, but everyday must have an urgency about it.
My thoughts and prayers will include thus scripture: Psalm 58:10, Be still and know that I am God. Love Deb Thoroski.
Thanks, Deb. Please send me the book. I will send you my address in a PM. I appreciate your prayers.
This was a hard post for me to read, I guess I continue to think that this is not really happening. That being said, I can understand what you mean and I will stay updated through your blog. I am guilty of saying the phrase, “You look great!”, I certainly did not think of it as the way you sometimes take it, but again can clearly see your point.
Wishing you continued grace and love.
Yes, I can imagine this was not an easy read. I know that people mean well, Heather. Thanks for your continued well wishes.