There Are No Words: Speaking Your Heart
2015.08.05 Toronto East General Hospital
1:10PM – Diagnosis: Cancer; Treatment: TBD
It is in my larynx, likely treatable, and too early to tell what the appropriate treatment option will be. I’ll be in for more tests in the coming days.
This sucks. I’m sad and disappointed, and will have a cry or two.
This is also life, so I’m going to live it.
There are many more writings to come, both from the days behind and the days ahead. Yesterday, for example, still has five episodes in the queue, and a variety of rants, DIYs, and other things too.
The sharing of plans, treatments, setbacks, and successes will continue as it began. Depending on the nature of the news, I may share with my family first; I let them all know about this last night. Specifics for the immediate future will be shared as I learn of them. The tracheotomy tube is staying in for now (just had a new one put in) until we can deal with the primary airway obstruction. (See picture.)
I hope that you feel welcome to share what you’re feeling here too, and not just about me and my stuff. If you know people who are in treatment (not just for cancer) and who care to chat online, feel free to point them this way too, or point people here to them.
Thank you all for your well wishes and support so far. Right now there isn’t really anything you can do for me directly, so instead, do a little thought experiment with me.
Think about the people in your life, and what you would say to them if you had something like this happen to you.
Now go say it.
There were over 80 comments and conversations to this post. Some of the good wishes have are not quoted here (for length of text) but I have re-read them all. My general response to these was something like this:
If you are comfortable with it, try my little experiment, see where it takes you, and give me the skinny here. Stories like that – thems the good tears. :) I can’t remember where I heard about it, or what the source was. Maybe the Spartans? The gist is simple. Take a few minutes to reflect on your life if [person] were to die right this second. The intensity of that feeling tells you how important that person really is to you, eliminating all the distractions and day-to-day “I’m sure we’ll have a good time then” procrastination. There are times when I’m pissed off with Livé or frustrated with Kathleen, or exasperated with mom, or disappointed in myself, or whatever… but with that little bit of perspective some decisions get a lot easier.
I’m grouping little conversations together to make them a little more understandable.
Kevin: I’m very sorry to hear this, although Leslie guessed that this would likely be the diagnosis. Let me know if we can help; it’s not her area of speciality but she does know the people at PMH who specialize in this area.
Julian: Thanks, Kevin. Looking back at what the way everyone was talking, I think there was some dancing around the Big C and the odds it was that instead of something less troublesome. (I didn’t ask for the odds either, and not just because I was pulling a Han Solo – more on that later.) Friends at Sunnybrook will be a boon on many levels, so I’ll happily apply my limited networking skills to meeting everyone there. :)
Justin: Never tell me the odds?
In the business analysis community I’m somewhat known for wearing Vibram FiveFinger shoes under almost all circumstances. I find them very comfortable and practical – like being barefoot, but nothing hurts. Also, they’re great conversation pieces.
Paul M.: Fight it the way you fight conventional footwear! Sorry to hear the diagnosis my friend.
Julian: Hey, don’t make me out to be a radical Toeist or something. It’s not like I’m out on the streets at night ambushing high heels while yelling “STRIKE A TOE AGAINST HEEL STRIKE WOE” or something.
Jennifer B.: :( I join in sending positive thoughts your way. Keep your sense of self and sense of humor in tact as you take this on. (And really, you do have a thing against conventional footwear, Paul was totally right about that)
Julian: You guys are acting like I have a secret army of Sleeper Shoesassins who unknowingly await that unexpected call. Then, activated, they steal out into the conventional shoe world, breaking heels and furiously wearing down soles (I imagine a belt sander would do it) while ruthlessly scuffing leather everywhere. …not that it’s something I have thought about much.
Jennifer B.: I’m sure there’s a cell of shoesassins out there. Just keep them away from my super-awesome black pumps. I’m willing to sacrifice comfort for sassy footwear.
It took me this whole year to realize I should have added something about Sassassination attempts using a pump action shoegun.
A parent of one of my daughter’s kindergarten classmates wrote:
Sandi: Julian, the parents in Ms. P’s class came together because of little Thatcher [[leukaemia, doing well now]] and we’re better and closer for it. We’re all here to support you and your family too. My friend Andrea just had a tumor removed from her lung and in a few days they will remove the one in her throat. I’m guessing the best thing I can do for you right now is try your experiment. So I will.
Julian: See? I told you that makes for the good kind of tears. Thanks.
Just hearing that someone was going to take my spartan-inspired advice to focus on the peop,e they loved – that brought tears to my eyes.
Michael H.: So, so sorry to hear this, Julian. Knowing your pragmatism, I believe this won’t have been a surprising diagnosis, but confirmation of a suspicion of something so awful is just as devastating as hearing it out of the blue. Don’t diminish your feelings. Feel angry, feel betrayed by your body, feel sorry for yourself and feel sad, But please, use those feelings ultimately to strengthen your determination, and bolster your resolve. You can beat this. You can come through this stronger than you are now, even. We are all here to support you in whatever way you require and in whatever form you are able to accept. We love you and we are on your team.
Julian: Thanks, Michael, for the advice and good wishes. I’m sure I’ll be experiencing a lot of feelings as this goes on. I was sad last night, and for a little bit felt the open, echoing space called ‘might have been’ yawning before me. At the same time, I’m sort of simple, emotionally; I’m not good at feeling about feelings, so I tend to stick with the one and work from there. Thinking about the day so far, I can count a lot of emotions, including feeling irritated, angry, impatient, loved, cherished, hopeless, happy enough to cry, sad enough to cry, and determined. If – when – I feel sorry for myself, or angry and my stupid flesh for spawning some mutants with the sole superpower of effing up their progenitor – well, I’ll feel them, and deal with them as best I can. Some of that will be on my own; some will be with family; some will be out here. I’ll be talking about this more too, later, but I need some more time to contemplate how to describe this attitude. Perhaps we can all clarify it together.
Something about this Michael’s two word post caught me right in the silly.
Michael S.: Take care.
Julian: Action Report (StaggTech CareTaker Mark 7A)
STEALTH MODE ENGAGED.
SCANNING FOR TARGET.
RETURNING TO BASE.
After action report: The StaggTech CareTaker Mark 7A and related CareTaker Protocol have undergone a successful field test. Let the enemy beware: we now have the proven capacity to take care at any time.
Care Has Been Taken.
Michael S.: 😂 LMAO
This next tidbit has to do with the period I lived in Hamilton, and was part of several plays and productions. The Scaffold Theatre Company has had a lasting effect on my life. Sen and I played a hybrid Narrator character, where I began as the ventriloquist and he began as the dummy. Over the course of the play he stole more and more of the story from me – in effect, taking my voice away. (I never thought of it that way before.)
Julian: Now with most people I wouldn’t have to ask this, but do you have to sit in my lap and sing for these hugs to occur? And do I have to get tossed across the stage? (thanks, btw)
Sen: Oddly enough, a friend from London – his cousin by marriage was in 3PO with us. Small world eh?
Julian: I (re)met someone from those days through this convo too. Fun. :)
Sherry: Ah, good times…
There were several comments on the general theme of “fuck cancer”. That brought to mind Rule 34.
Justin: Be well, man. You can beat this. And f#ck cancer.
Julian: See, now my sass is all hanging out and I want to drop a rule 34 on that comment, but my mom reads this and I think she’s got enough growing up to do without getting into THAT corner of Reddit. THE FIRST RULE OF RULE 34: DO NOT LOOK UP RULE 34. Seriously, if you don’t know what it is already, choose bliss over knowledge.
Justin: I hear your sass hanging out is a hazard of those hospital gowns.
Julian: A hazard for everyone, yes.
There were several comments about my apparently good attitude, and how it would help me beat cancer.
Heather: Julian, this does suck and it is life, well said. Your attitude is admirable and needed! Having that mindset is an asset to healing. What an epic journey this will be!
Julian: Thanks, Heather. I have my worries and my fears too – huge, terrifying questions like, “how far has it spread” and “how long do I have”? If I spend much time on that sort of thing my stomach drops and I start to feel pretty anxious. Maybe it is all the analytical thinking baked into my nature, but I don’t get trapped in those kinds of questions that often. My brain immediately starts trying to break it down into smaller, questions that are have a chance of being answered. I can’t answer ‘spread’ yet, but I can figure out what aspects of the answer will mean to me. I care about the impacts of treatment options on my daily life, for example. I’m passing into the Land of Nod. I hope that’s a coherent response!
Perry might have been the first to really call out the irony of the location of my cancer.
Perry M.: It is a cruel irony that the monster should attack you in the one place people like us depend on for a living. My thoughts and well wishes are with you. Strength and courage Julian
There were also a few comments saying thanks for expressing my experience, and being open about it.
Susan A.: Thank you for being so brave and vulnerable. Friends and family will want to know how you are doing and what you are feeling, but will often be too afraid to ask. Cancer is a bitch – you know I have been through this with my son. But there will be many gifts, wrapped in the pain, fear and grief. You are so very loved.
All in all, silliness did seem to be a theme for the day.
Chris W: That sucks Jules. Stay strong. By the by, if you stuck, say, a peanut M&M in there, how far do you think you could shoot it?
Julian: Depends. In or out?
Chris, I can’t say for an M&M because I don’t want to die just yet. I can tell you I can eject a glob of viscous goo a good two metres, whereupon it produces a fascinating abstract representation contrived through the medium of the mucosal structure to sublimate this, transcend that and come to terms with the fundamental dichotomies of the other.
I really had no idea what to expect from home care, or what to ask about, so I asked Facebook. Suggestions included:
Jacqueline: Avoiding any type of infection to trach…
Moon: Is this a psw or a nurse or both. Psw… do they do baths… administer meds.. cooking… also keep that tube clean. .. scrub that bum!
Jennifer: May need to know what stuff to “wait for help/answers” vs. Go/call docs asap. Whats the threshold or magic reason to drop everything. That was always my big question with Daniel before his heart surgery. And 6mo olds can’t talk to explain why the screaming, at least you have words in some form.
Sherry: How to get more supplies when you run out.
Umberto: What won’t/don’t they do? (I always find this a good starting point)
Susan: I am so glad that you will have this support. We had such amazing nurses and caregivers. May yours all be angels in disguise. Get to know them. One of our favourite home care nurses told Xander that he could cry or scream as loud as he wanted when he got his needles – but no kicking or punching mom or the nurse. Not sure if that is helpful. We laugh about it now….
Thanks for your help, mom. Kathleen did it yesterday. Somebody loves me!
Kathy: It’s been a few decades since I combed the boy’s hair. Sweet pleasure to be allowed.
Kristin: My mother really likes this picture. Followed by a history lesson for my children featuring the “lunchtime escapades of Mark and Julian.” Special guest stars – The Flintstones…
Mark is my oldest friend. We spent a lot of primary school lunches in his house watching Flintstones. Kristin is his younger sister.
2016.08.05: Energy Budget Part Duh
Right now I’m struggling with having a lower-than-it-should-be energy budget. That it’s my own fault doesn’t make that easier. It is, however, what it is. I’m back on my Synthroid .088 in the mornings, and should start to feel the effects over the coming weeks.
After walking the dogs and reexamining the murals across the street, Livé and I did some prep work for a woodworking project this evening. It’s a bath-caddy to sit on our tub as a platform for bath-sauces, tablets, and other important items. We’re building it out of cedar 1"x2" strips recycled from a trellis that I took down. This meant trimming the staples that held the old thing together and then pulling those staples out. Livé held the wire tips and I trimmed them. (We wore our new safety goggles, by the way). She was quite helpful once we figured out an acceptable division of labour.
Tomorrow morning I’ll get her help to cut the cedar strips down to the right size, and to set up the design to handle the curve of the tub while remaining stable and forgiving of knocking stuff over (e.g., won’t dump everything into the water with an errant elbow).