Scares and Scans

The funny thing about cancer is that even when it's gone...it never really feels completely gone. 

It so happens that this spring has been unusually heavy with some unpleasant medical reminders.... and I really have accepted that these things just can't be avoided. Ah well. But that won't stop me from complaining about them on this blog!! So sit back, relax and enjoy the weirdness that is my post cancer life!! 

As of the beginning of May I have hit the 2 year "cancer free" mark. It is at this point that I undergo a series of different tests and scans to "make sure" that what the doctors have been telling me these two years since my last PET scan after treatment - is still true. That truth being that I don't have cancer. Right now, I basically have to trust them that this is still the case, and they basically have to trust the blood tests, physical examinations and stats  - that this is still the case. But the only thing that can actually prove to any of us 100% that I am still cancer free is the dreaded CT scan (or PET scan). They don't like to dole out these scans but I was told that some people choose to have a scan after the 2 year mark just to be sure (damn straight they do!!!). I assured my oncologist that, no,  I wouldn't be waiting another two years to find this out (as if!?!). Anyway, more on the fun-filled CT scan later.

My first very unwelcome incident/reminder came unexpectedly at the end of March. I had just arrived back from 10 days in Florida visiting a friend, and I was scheduled for a mammogram (which  I now take on a more regular basis because of my increased risk). The day after the mammogram I received a call from the hospital telling me I needed to go to the civic for another mammogram and ultrasound as soon as possible since they had found some "irregularities". Oh man. That word again. I remembered that word. So I got this call on a Tuesday and was not able to go to the hospital till Friday. I can honestly say that those 4 days were some of the longest 4 days I've had in a really really long time. I basically spent the entire four days with friends, trying to distract myself, while all the time I was inwardly planning for the worst possible outcome, along with everything in-between. Exhausting and terrifying. And it seemed a much scarier prospect than it was even the first time around. Muuuuch scarier.

But its a happy ending - as that glorious Friday I got to the hospital, had the first test, endured a 5 minute eternity in the waiting room before a technician came and told me there was nothing at all to worry about and I was fine. I felt like hugging her and punching her! But mostly hugging. Apparently they were being over-cautious.  The sense of relief I felt is one I don't think i experienced the first time around....it was as if it had been delayed a couple of years and decided to all hit me...there in the change room as I was changing out of the gown. It hit in a crazy and beautiful way that day and I felt as if I shed a weight I have carried all this time without even knowing it. It was one of the first warm days of spring that day as well...a truly amazing day. I cried a lot that day. And celebrated a lot.


Just five days ago was my CT scans. It was actually 3 CT scans all rolled into one fantastic package. And of course it was scheduled the day after my birthday! Happy Birthday to me!! If you've never had one the feeling that accompanies a CT scan is really strange, uncomfortable and hard to describe...but I'll do my best. Here's basically the run down:
1) Upon arrival at the hospital I am given what feels like gallons of a "Contrast solution" to drink over the space of an hour and a half that is iodine based and tastes like lead. Awesome. The sweet volunteers try to help by providing crystal light flavour packages...but it just makes the lead taste like slightly sweet lead. 2) In the middle of this nasty drink fiasco I am brought into a room where a nurse jams a large IV into my very shrivelled post chemo veins. This equals major discomfort. 3) Finally after I've barely been able to drink the nasty lead drinks it's time for the scan. This cartoon describes it really well:

That is almost exactly what happened to me - minus the actual vomit. Although it came dangerously close to happening. And yes, a metallic taste immediately fills my mouth along with a feeling of intense heat running through ALL my veins which is what creates the feeling of having to pee. SUPER Bizarre. Like the body is temporarily being inhabited by something else entirely. So now you know. Questions? Comments? I'll answer em all. I should start a consultancy business.

I had to chuckle though when one elderly gentlemen came out of the scan room flushed and saying, "Well, that was an experience!!". I had endured this during diagnostics so I knew basically what to expect. This poor dude clearly did not. Although he did seem mildly amused.

So now I wait to hear what all my doctors and oncologists tell me I am almost guaranteed to hear:
That, yes, I am still cancer free.
I guess I just don't believe in guarantees anymore. I do like to think that when the rubber meets the road I'll still be ready to take whatever else life has to throw at me...but to believe in guarantees?
How could I?

Que sera, sera.

Thanks for reading this impossibly long post cancer rant! If I don't update soon you can assume the doctors were right!

peace,
-Hulia     

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