On being present

Souls who braved the un-spring-like weather on the first day of spring to splash in puddles

I've been absent from writing here for a few weeks. I apologize if you've missed me!

Here's the quick update: I had a second and final surgery to remove cancer from my body on March 30. Following the first surgery (February 21), I healed quickly and was back to work in two weeks. This time, I will need to heal for at least six. This will be different for me. I don't often do "nothing." I will get to play with the "being" side of life for a change.

Here's the longer reflection: Leading up to this surgery, I didn't have the trepidation and anxiety I experienced with the first. I knew what to expect in terms of how the hospital process works. I had two opinions from two separate and confident doctors that this was the correct course of action. I had my advanced care plan, my will, my funeral arrangements all in place. I knew I would vomit all over myself from the anesthetic, and I accepted that a helpful recovery room nurse would assist me with that hot mess.

I reflect now that I was truly living in each moment leading up to the surgery. I mean, I still planned ahead and coordinated the logistics of child and dog care during my hospital time, weened myself off coffee in a methodically-planned way, and made all the appropriate arrangements for time off work, but my mind was at ease as I went about these tasks. I consciously stayed present, in the now. 

And frankly, I was focused on other things.

I went to see Joey Tremblay's "BAD BLOOD"  -- please, see it if you are able, when is near you. 

Spring arrived on March 20. While this winter wasn't especially hard on the Canadian Prairies, the arrival of spring is always welcomed with relief and a sense of accomplishment. I decided spontaneously to hold a flash mob to celebrate by splashing in mud puddles and dancing in public (that's us in the picture above).

I spent a couple of hours one day writing down a story that has been in my brain for a few years, and then submitted it to a publisher, because WHY THE HELL NOT, right?! YOLO, as the young folks say.

The provincial budget fiasco happened, annual taxes needed to be filed, parent-teacher conferences needed to be conducted, a re-org went down at work. There was just a lot of life happening, all the time, so I did that, rather than be in my head about the future.

And then it was 4:50 a.m. on Thursday and it was time to get up and go to the hospital.  

It wasn't until I was in the pre-op bed, draped in the hospital's most flattering (aka, revealing) gowns, that two grown humans could not get to tie up appropriately, having the tiny veins in my hands skewered by not one, but two nurses attempting to get an IV in, that I realized, "Oh shit, how tightly did I hug C last night? Should I have made better farewell videos? What haven't I said to M that I should have?" And of course, it was too late, and so I breathed and hoped I would wake up again. And that the damn IV would be in already. Truthfully, of the entire surgical experience, having my hands stabbed repeatedly was the most painful thing. Either that or my MRI-booking process (more on that in a minute).

Surgery was textbook, no surprises, no complications. The waking up was long and slow and uncomfortable. I'm a slow metabolizer of everything, so after being unconscious for three hours, it took most of the next 24 hours following to regain full consciousness. I dozed off and on in the short stay ward, as much as I was able, because NOISE and VITALS and HAVING TO PEE ALL THE TIME AND FOREVEEEEERRRRR due to so much fluid and so many drugs in my system.

When the doctor visited mid-afternoon and said I could go home, if I wanted, we hopped to it, as much as someone with incisions in their abdomen can. I carried on my dozing at home that evening, and waited for my saliva production to return so I could eat something. I took my pain meds like clockwork, as I had been advised to stay ahead of the pain. After two days, I was off everything. Well, back on coffee! Huzzah! 

Overall, the care I received between the first inklings of something being amiss (January 19) to being out of surgery on March 30 was fantastic. The only real bit of so-ridiculous-it's-funny-but-not-ha-ha-funny-more-like-sad-funny was the process to get an MRI scheduled. Here is a run-down of how that went:

On March 1, I saw my doctor and she indicated she would book me for an MRI the following week, ahead of the second surgery, just to be sure there wasn't anything else going on in my insides that she needed to be concerned with. 

Phone call 1. March 9: A message was left on my phone to call the MRI department to get my appointment information. 

Phone call 2. I called the number they had left and was told by the person who answered that I needed to call a different number.

Phone call 3. I called the second number and left a message. 

Phone call 4. March 10: The next morning, having heard nothing back, I called the first number again. The person who answered JUST NEEDED TO VERIFY WHICH PHONE NUMBER THEY COULD REACH ME AT TO SCHEDULE THE APPOINTMENT. I politely verified the number THEY HAD ORIGINALLY CALLED ME ON. (Please note that this took four separate phone calls so far...)

Phone call 5. March 10: I got a call back from the second number I had called (see #3 above) asking what I wanted. I indicated I wanted an MRI appointment, as my doctor had requested several weeks ago. The person said someone would call me to get all my information. I shared that mere weeks ago, I had been across the hall from the MRI department, in the CT department and that in fact I had provided all my information THREE WEEKS EARLIER for a similar procedure. Could they not access this information to expedite the process? No, I was informed. 

Phone call 6. March 17 (A WEEK LATER): I was called by someone who asked me a series of questions (all of which were the same as the CT scan questions I had already answered) and told I would be contacted by a scheduler to finally book the appointment. Oh and that I would need to get blood work done before the MRI, so I should find time to do that.

Phone call 7. March 20: I was called and told I would be going in for an MRI THE NEXT MORNING. 

I'm pretty sure there could be a few process efficiencies made to improve both the patient experience and the healthcare system workers' lives. For example, how about a single phone call to collect client history AND book the appointment? No? Is that just my half-German-ancestral-efficiency talking? I'm sure there is some very meaningful and well-negotiated division of duties between various unionized employees that must be maintained to ensure my patient experience is of the utmost quality and safety, but jeez Louise...SEVEN phone calls for one appointment? Honestly, after going through this (which I realize in the grand scheme of what's happening in the world is NOT AT ALL a big deal)....my sense that the rest of my procedure would go as planned was slightly less optimistic. If it takes seven phone calls to get a diagnostic appointment, how likely is it that all the right people will be in the room when it's time to cut my guts open? 

Anyway, it all worked out in the end. Rant over. 

Bonus: I discovered the Bair Hugger. If you are someone who is often cold and have not had this experience, I highly recommend it. I'm looking for a home edition. 

Thanks for your support and interest!

Jilly

A new journey begins...

I've been interested in end of life (EOL) coaching since I began my coach training several years ago. I have witnessed family members, friends and others face their imminent deaths (typically due to a medical diagnosis or simply their body reaching its expiration date) in various ways...quickly, slowly, with a plan in place, in denial, overwhelmed by choices and decisions, and sometimes lost within the barrage of differing agendas: medical intervention (or not), religious protocol (or not) and family dynamics (or not).

I've noticed that sometimes the person is ignored, and the illness or state of their physical body is the focus. This saddens me. I feel like there is something missing for these people. That they get overlooked in the process of analysis, decisions and options. That it becomes not about them as a whole, complete human being, but only about that one -- physical -- part of them. 

I want to create space for people to have 'good' deaths. Deaths they feel ready for. When death comes, I want these people to feel they are more than a diagnosis, a statistic, a sum of the treatments they received. I want them to have had the opportunity -- and support -- to explore their experiences on this planet, and have some attention paid to WHO they are, how they want to BE and what they want to DO, if anything, as they face death...in a way that doesn't ignore a medical condition or situation, but that doesn't make it the central character.

This really is the premise of any holistic coaching practice: to help people be at choice to live a life that brings happiness, fulfillment and satisfaction, as defined by them and only them.

Some people realize early on that they want to choose how their life unfolds. Others discover this later, after they have followed a path they believed they "should" or "have to" follow, and find themselves unfulfilled and unsure who they are and what they really want. And others learn after a scary diagnosis, major injury or other life-altering event that their time here is limited, and they want to make the most of it. In reality, none of us knows when and how our lives will end, so living in the power of our choice, in a life of our own design, is available and meaningful at any point. Imminent death just brings a sense of urgency to it. 

I began following leaders and trailblazers in this realm, people who have brought the 'good death' conversation into the mainstream. Dr. Martha Jo Atkins. Sarah Kerr. The Conversation Project. Death Cafes. Death Midwifery and Death Doula groups. (just Google 'em!) These are individuals and communities striving to bring choice and awareness about death to others in an effort to demystify and normalize death. (Spoiler alert: It happens to everyone!) These are people who want to create space for good deaths, who've found ways to make these conversations acceptable and comfortable. I've found wonderful resources from these people and groups. 

And now I get to apply them to myself. 

A couple weeks ago, I found out that a polyp I had removed from my cervix was cancerous. The immediate plan of action, medically, was to have a cone biopsy and other exploratory surgery to see if there is more. Since then, I've had blood work, a CT scan and now am awaiting a consultation at the local cancer centre and a surgery date from my doctor. 

While the surgery itself is fairly routine, I've never been under general anesthetic, and I have a pre-existing immunity-suppressing disease so recovery from anything can be prolonged in my case, so I'm doing all the advance care planning things one should do prior to surgery.

And it's been a journey. 

My husband and I created wills after his parents died and we had our daughter, so the legal stuff is mostly in place. Using my health region's guidebook, I assigned a proxy, and created my living will/advance care plan. This covers delightful topics like the level of life support I'd like should things not go as planned during surgery; if I'd like CPR or not; how I'd like my organs and tissues donated or not; and then the things I'd like or not like to happen if I am declining and death is clearly approaching -- music, visits from certain people, things said or not said, etc.

And breathe. 

I made a list for myself of the other things I'd like to have in place if the surgery doesn't go well. While many people don't want to think about these things, let alone write anything down for them and then talk about them, in my family's experience, NOT having things written down creates agonizing choices for loved ones who have the task of making arrangements on your behalf. Plus, I'm a planner and dare say a control freak, so planning is a) fun for me, and b) helps me feel like I am controlling something in this time of unknowns and what ifs. The list includes things like: 

• planning my funeral or memorial service, including music, food (no ladies' auxiliary sandwiches!), who speaks, and the feeling I want the event to have (I was an event planner in the past, so...)
• collecting all my logins/usernames/passwords for bank accounts, email, etc. and putting them in a secure place
• updating my will with particular items to be left to particular people, and instructions for particular actions or wishes I have after I'm gone
• recording video messages for my husband, daughter, parents and siblings
• writing love letters to the amazing people who have been part of my life

The practicality of focusing on a list and checking it off helps keep my big emotions in check, most of the time. So for me, it's a coping mechanism. A way to stay present and productive.

I've also begun to answer some big questions about my life using resources from Willow EOL. I'm finding that exercise way more challenging than I thought it would be.

I often ask my coaching clients these similar questions and what I've learned is it is way easier to ask than to answer. Especially when there is a very real chance my answers may need to be final in the next couple of weeks. So, I keep putting this exercise aside and focusing on the "practical" stuff. It's just easier. Heart work is hard work. 

Sharing about it helps bring awareness to the need for practicality in these situations so that hard decisions can be made more easily in the moments when big emotions are present. I hope I'm making it easier for my people. I know there will be sadness and grief and anger and all the big feelings, but at least they will know what I wanted, so they won't have to worry about choosing wrongly.

Like for most of my life, they just have to do what I tell them and everything will turn out fine. 

I will write more here about the other aspects of my diagnosis, the EOL planning I'm doing and the big emotions I experience, so if you're into that, I invite you to subscribe and comment. If you're not, please go about your business. 

Much love and light,

Jilly