Cancerversary

On this day, November 19, two years ago, I had my very first cancer treatment. ABVD Chemo therapy regime began. It was the day that thrust into motion what would become the worst two years of my life. Why bring up this very inauspicious past event, you might ask? Because I have this feeling that sometimes remembering helps.

I recently went to a reading by author Wayson Choy who has just written a book about his own near death experiences. He said 3 things that really struck me:

"Time won't heal but you can live through it. You can survive it. You can put it in its place."

"Write it out. Write out the truth, so that you own it and it doesn't own you."

"You don't control life" - even though this was one I know well, it was so affirming and comforting to see this man, well into his seventies, say something that most people spend a lifetime trying to deny (and he even said it with a gigantic smile!). I remember pent up air just leaving my body hearing him say this. It was a palpable sense of relief. I guess because any control I had over my life, or pretended to have, is now absolutely completely gone. I cant even try and deny this. I am so exposed. So vulnerable in my powerlessness right now. And I just don't have the strength to hide it - or pretend anymore.

Anyway, I think these are some of the reasons why I need to write this out - 2 years after the fact. Because I don't want the pain of the past couple of year to own me...... indefinitely. Eventually I want to own it, and fully integrate it into my experience without the knee jerk reactions of fear or anger or confusion or depression that it so often evokes. So here I am - writing it out.  

                        
I remember the day the above picture was taken. It was about mid way through all of my chemo...and I remember that it was approximately a three hour wait that afternoon. I am holding up a card - everyone gets one when you walk in the waiting area, and you stay there until your number is called. Volunteers wheel around carts with cookies and tea and coffee. When your number is called you are ushered into the main chemo area by nurses decked out in what look like giant blue moo-moo's - but which are actually meant to protect them from the poison they are injecting into me. Big cushy chairs (chemo lazy boyz) are arranged throughout the room. I remember this particular day playing games on my sisters Ipad while I waited for the 2 plus hours it took to finish chemo. I felt like if I had to see one of those volunteers bring around more tea I would scream or punch them in their smiling faces. Yeah - it was at that point.  I remember wheeling the IV back and forth from the washroom. Yes...I sat in that blasted chair for 2 and 1/2 hours every time. Often I would be the last person out of there. Thinking back on it...the whole thing is truly disconcerting! But, ya gotta do what ya gotta do. There was a specific drug that they had to empty into me that the nurses called "The red devil" because it was red in colour and it stung your veins as it was going up your arm. That red devil was a bitch.

But nothing was as bad as the aftermath - right after...the nausea chamber, the overall horrible physical feeling lying on the bed in the dark after coming home from the hospital, the weakness...the full body weakness...that kept getting worse and worse and the weeks went by. The feeling of every bit of strength drained out of me. Chemo really does destroy your body. The rumours are true.

 

What a pleasant jaunt down memory lane....not! (The above is a picture of my radiation mask. Which I still have. Somewhere.) The truth is, when I look back on all of  it, despite the obvious grossness of the experience, and the general surreal feeling of "Wow - this is actually happening to me! I am a jaundiced hairless person receiving chemo!" - Despite all of this....the experience of going through it was a four star vacation in comparison with the experience of life afterwards. I feel that the cancer was the trigger that set off a much more painful and difficult experience, that being the loss of an identity, along with significant people I loved, a home, work I loved, and so many other deeper and harder things to articulate. Its strange to look back over the cancer experience and realize that even in the midst of that, I was so much happier and more satisfied with life at that time (even with chemo!) than I am now.

Sometimes when I think about this it almost undoes me. But there's nothing to do now but wait and hope that in some way I'll come out the other side of this with some measure of perspective and some feeling of having found a place in this new life. So this is a big reason why Nov.19 will always be a significant one to me.

This Elizabeth Kubler Ross quote gives me some of the hope that I need. If nothing else, I hope that this entire experience will turn me into one of the people she describes here. I believe that would be enough to justify it.

 

Happy Nov. 19

The Aftermath Road....

Hey all,

So I am writing this post in response to a number of folks who have mentioned to me people they know who are experiencing the after effects of the cancer experience and who, as a result, are feeling overwhelmed and a bit lost. The longer I continue down the post cancer road, the more I am realizing how hard a road it is, and how isolating it can be. So by request - this one is for them.

I was reading an article  the other day about post cancer anxiety (if you are in post-cancer or end-of- treatment phase I would highly recommend it). In it a woman describes her experience so succinctly that I was floored at how closely I could relate to her words:

“It was only when treatment ended . . .that the full impact of what had happened hit me. I felt cut adrift. There is an expectation that when you walk out of hospital on that final day of treatment, your cancer story has ended, but the reality is that in many ways your story is only just beginning. . . I passionately believe that more follow-up care is needed to give recognition to the post-treatment phase of cancer survivorship.

It is so absolutely true to my experience that it is only when treatment ends that the real life shit storm truly begins. The story is happening. Now. Whether I like it or not...there is nothing to be done. I either deal with it or I become totally numb, and that (unfortunately) is not an option for me. Some days, especially lately, I wish it were.

I am approximately 4 months post treatment and smack dab in the middle of re-evaluating my life, my desires, my priorities, my work, my dreams, my plans, my relationships etc. It is a serious spiritual, psychological and emotional mine field. I am only now grasping the fact that it is happening mostly due to the experience of having had the disease. It illuminated all the other diseased areas of my life.

Along with the life re-evaluation, I am also (still!) dealing with the fears of re-occurrence, and the possibility of an early death. The good news is, if you happen to also be experiencing this (and losing sleep over it) from what I gather it is extremely common. I take a lot of comfort in that.

So, for me, processing all of this involves a few key things which I am undertaking...step by step.

• Support: I now know that surrounding myself with an accessible and supportive community of people is so key to my full recovery (if, in fact, full recovery exists!). Being with people who know me, can allow me to be fully myself, to fall apart when I need to is probably the most important thing I can do for myself.  I am uber blessed to have this. I know not everyone does. (There really are no words for my gratitude for this).
• Solitude: In small, manageable doses. Too much solitude in this situation can equal major melt downs, but the right amount brings a lot of perspective. I struggle with this balance in a big way right now. Its easy to become distracted by any number of things, and lose the ability to hear that good old inner voice of truth. Its coming through though. Slowly but surely.
• New experiences: In my case this means travel, meeting new people, being inspired by different places. Its like cleaning the slate of my life - so to speak.

side note: If I get my shiznit together Ill be headed to Spain soon...the Camino beckons. Super pumped. Newfoundland will have to wait. Sadness. (Tilting - I miss you!!)

Anyhoo, I really hope this reaches you folks who are needing some mutual commiseration.
And may your own living road, however treacherous, take you wherever you need to be.

Big Love,
-Julia

Graduations and plate smashings

So I have decided to officially declare myself graduated from the cancer experience. I decided to do this the other week when, on my bike, I happened upon a group of graduate students spilling out of their commencement ceremony. It was an amazing, sunny, brilliant afternoon and a gaggle of students, parents, siblings and grandparents posed for pictures with the graduates whose faces glowed with the anticipation of new beginnings. Everyone was squinty eyed and proud, and I found myself so entranced by the scene that I sat under a tree to watch it all unfold.

The first thought I had was that this is yet another "life milestone" moment that I did not have. I didnt feel cynical watching it...I felt instead hopeful for the students, wondering where their lives will take these strangers. It was beautiful to me.  I think it was the beauty of fresh starts, blank pages that shine in their stark whiteness.

I also felt a certain amount of pride thinking about my own life, and the countless 'fresh starts' I have had as a result of a  kind of non conformist curiosity about life. Anyway, I think it was the first time I had thought of this latest 'post cancer new beginning' in a positive light, and in watching the convocat-ers I recognized my own readiness to step into the future.

Which reminds me that I did have my own Cancer Commencement ceremony of sorts with a friend: The Plate Smashing!

This plate reads: "they should never
have put the word 'therapy' after the
word 'chemo'. "Along the sides of the plate is
written"fucking needles" about 10 times.

Katie in mid smash! We noticed that
in this pic the plate fragments look
transformed into white birds flying away.

During a visit, a kindred of mine suddenly brought out a bunch of value village plates and a permanent black marker...we then proceeded to write out our laments, complaints, sorrows, rage on said plates. Then we went into the back yard, put goggles on, grabbed a mallet and went to town smashing them - Seriously!! Talk about cathartic. I should mention here that this friend has been through a tragedy of serious mammoth proportions, so it was a needed exercise for both of us. In the aftermath when we were picking up the broken remains of all our plates, Kate commented about how much like life this was....literally picking up the shattered pieces of whatever it happens to be that has blown your life to bits.

part of the aftermath.

Anyway, as part of the "moving on" process I'll be moving back to the old blog for the most part. I'll still post here every now and then...but look here to get the latest ramblings if you so wish:

The Waiting Room: www.hulietta.blogspot.com

It strikes me right now, the irony of the name of my old blog.... as I have spent WAY too much time in waiting rooms over the past 8 months, I should probably change the name of the blog....any suggestions?

A brief news update before i sign off:

• had my first oncology 'follow up' earlier in the month and all is well. I am well on the road to being "cured" it sounds like. It was bizarre and slightly uncomfortable to be back in the hospital...but I survived.
• living the life here in Guelph, in total relaxation mode. Been great.
• headed to Ottawa town for the month of July then possibly Newfoundland for August. Looking forward to some travelling adventures.

Happy Summer.
May all be well with you.
A bientot,
-Julia

User 's guide to post Cancer fallout

Welcome to my guide to dealing with post cancer emotional fall-out! Fasten your seat belts folks, and get ready for a fun-filled ride full of shits and giggles...Yahooo!!

That, by the way, is complete bitter sarcasm. There won't be very much fun involved in this post I'm afraid. So...if ya can't take the heat I'd suggest getting outta the kitchen.....now.

Alrighty then. So it's been over a month since my last treatment. The first 2 weeks or so post treatment were complete euphoria. I was so utterly relieved at being done treatment, and the joy of that was all encompassing. But, as all things must, it ended. I was under the mistaken impression that this euphoric experience would be a permanent state and that somehow, through dealing with the disease I had reached some sort of Nirvana. Now I realize that the opposite is actually true. Which is to say that all of the internal and external garbage has only intensified to an insane degree. I will now attempt to outline some of what this entails for me. I do this not to elicit sympathy or fixing advice (as if this can be fixed!!) but to remind folks who have gone through, or are going through traumatic illness, injury, or other types of  random suffering that you are not alone in feeling like a total whacko - and I think this is only temporary (?). At least I reeeeaaalllly hope so! Okay (deep breath) here goes!

Big J's post treatment fall out symptoms include:

• Super intensified emotions...about almost everything.
• Extreme sudden intolerance for certain kinds of behaviour in people (this can include chronic dysfunction that has gone on for years, certain banal or superficial conversation, stupid complaining, stupid cliches, and many other things)
• Extreme anxiety about the future
• Anger (red, hot!!) at having lost almost a year of my life to cancer, at my body for failing me, at the universe for throwing this pile of shit into my life.
• Simultaneous desire for change and fear of change.
• delayed shock
• Difficulty focusing or concentrating (Chemo brain?)
• Fear of cancer re-occurring (which boils down to - fear of more chemo!)
• Barrage of existential questions around what constitutes true happiness/the nature of suffering/grief/death and dying/the ultimate meaning of life. (yes - I am totally mentally exhausted in case you were wondering).
• Difficulty making decisions (this is not a new one)
• Envy and dislike of people whom I perceive to be happy, well adjusted and problem -free (you know those shiny happy people).
• A sudden very uncharacteristic desire for security (suburb envy!?!?)
• A sudden very characteristic desire for independence and adventure. Yes - both of these are happening at the same time. I feel like I have multiple personality disorder!
• Self imposed pressure to 'make something of my life'...and FAST before it's too late.

Sadly, there are many more bullets I could add to my current list of neurosis. I bet I know what your thinking: "This girl needs to book an appointment with a shrink - STAT!". Have no fear - done and done! Although not technically a shrink,  she might be the worlds best psycho therapist around. With any luck, soon I'll be one of those shiny happy well adjusted people who I currently want to punch in the face! (Just kidding - I don't really believe in well adjusted people - just well-disguised people).

So a quick word or two of advice of you are experiencing any of the above "Big J"  symptoms:

1. Go see your shrink, counsellor, therapist guru or what-EV and start to unload and get an objective perspective. If your shrink is an asshole who you are not completely comfortable with get a new one. If you think you have it all together and don't need one - enter the real world and get over your perfect ignorant self... You'll do yourself and those you live, work, engage with on a regular basis a huge favour. By the way - no one is well adjusted - or wait....didn't I already go over this?
2. Get outside. It's deceptively simple, but one hour a day can help shift my perspective pretty drastically. Especially at this time of year.
3. Okay - I know I said 2 - but this one is paramount and counter intuitive when in a semi-crisis mode: Take it really super duper easy on yourself. Try to think and exist in slow motion. One small movement, thought, gesture, word at a time. I'm admittedly not so good at this one. But really - is anyone in our hyper ADD  productivity and efficiency obsessed culture?? Gawd - its no wonder I'm an f-ing basketcase!!!!

Last thing. The following is like nourishment for my impoverished psyche right now.

"Your pain is the breaking of the shell enclosing your understanding.
      Even as the stone of fruit must break, that it's heart may stand in the sun, so must you know pain.
      And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;
      And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.

     And you would watch with serenity through the seasons of your grief."

-Kahlil Gibran - from "The Prophet"

Three cheers for serenity.....Good luck compadres,
-Julia

piano desk

In trying to write this blog post I have reached a conculsion:  I have so much to say that I have nothing to say. Tonight the mind is wildly out of control like a snotty little toddler and running me ragged! It's exhausting. In moments like these I turn to the ridiculous. Desperate times call for desperate measures. I know its done the internet rounds, but even still this little beauty always does the trick for me. This nugget of pure genius is always worth another go. I will now watch it 5 times in a row and hopefully dream in  burgundy velour to a discordant sound track. Sheer class.

That's all. Night night.

Vocoder Beauty

Tea cupping the process

I never would have imagined that at this point in my life I would become teacup obsessed...but it seems to have happened...about 30 years too early. For the past couple of months I've been having daydreams about sitting sipping my tea from a delicate flowered tea cup instead of a big, awkward, heavy coffee mug with some lame picture of a reindeer on it. I'm not sure how or when this notion of drinking from teacups began to infiltrate my thinking, but regardless, I couldn't stand it any longer and I finally ambled on down to "Disarray" (a fine Guelph second hand gem of a store) and found myself 2 very pretty teacups (with saucers) and brought them home with me. I'm sipping from one as I write this.

After giving it some thought, I think this teacup thing I have going is a bit of a metaphor for the way in which I am now entering the murky territory of "processing the experience" of the past 6-7 months of diagnosis and treatment. It's something I am approaching very delicately, slowly and with a wee bit of reverence. It's also a bit like easing into a really hot bath. You have to start with your tippy toes and then your ankles and then your lower leg etc. You have to slowly acclimatize yourself. You can't just get right in there or it's gonna hurt like hell!( On a side note - it's true what they say: tea really does taste better from a tea cup! If you don't believe me give it a whirl! It's also a lot of fun if you do it in a rocking chair. Just a thought.)

It's been about 10 days or so since the last treatment day and it is fascinating the things that have surfaced since then. I realize now that I was in extreme auto pilot lets-just-get-this-shit-done mode for the duration of my diagnosis and treatment. In reading through my journals of the early days of diagnosis I feel as if I have only now experienced some shock that I wasn't allowing myself to feel at the time...I was pretty much  "all business" from the get-go. In finishing treatment all these repressed emotions are coming out and they are in a serious mood to par-tay! They're like "He-ey....we exist! maybe it's time you acknowledged us bi-atch!".

You would think re-experiencing some of this in a deeper way would be a large bummer but ironically it hasn't been a negative or exhausting thing at all (although somewhat alarming at times).  I feel  an immense sense of relief  to finally psychologically begin unburdening myself and unclenching my mind...just allowing myself to feel. It seems healthy to let the reality of what I went through sink in - instead of expending all that energy constantly holding it at bay.  It's also really nice to not have to be "strong" all the time, or brace myself mentally for the next treatment etc.

Being released from this kind of "holding pattern" is a really freeing experience - and a big reason to celebrate (by drinking tea from pretty tea-cups, for example.)

Tucked into my journal I found written on some tattered folded pages a bunch of poems and quotes from various authors. I carried them around with me constantly when i was first diagnosed,  and I would take them out and read to myself when I felt completely freaked out and needing some grounding. It was amazing to read some of them from the "after" perspective - and it gives me hope that things do indeed pass to make way for the new things. Here are 2 of them:

Does a pendulum stop at the end of it's swing?
So war and peace;
love and hate;
togetherness and aloneness
cycle and recycle...

Life is full of little resurrections.
Why then should we doubt the bigger ones?

-Jim Taylor
------------------------------

But then comes change
winter changes to spring
we meet a friend
we rest
forces awaken in our bodies
life seems to surge once more...

as the morning sun -
calm
unswerving
certain
never faltering

-Jean Vanier

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That's all for now - Peace Out! And don't forget to observe...