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

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

C'est Fini! (kindof)

Voila: Le radiation mask! My Cancer land souvenir! Yesterday a friend hilariously suggested that I go out for Halloween this year as "Cancer". I could wear this mask, a white lab coat and wheel around an IV stand - ha! Anyway that really is me under there believe it or not.

Here mask is telling me that she's not so sure the Halloween get up is the greatest idea. What EV!

TREATMENT DONE!

(insert the dancing monkeys here)

Today has been my first day of life without treatment in the foreseeable future. It's hard to describe what this feels like. I've been vacillating between not really truly believing it, and feeling like suddenly I'm on the best vacation ever. It's pretty unreal.

It's true what they say...radiation is a breeze in comparison with chemo. Very little side effects, no waiting, in and out. Downsides were having to go into the hospital everyday....but really - it was no biggie. I also got to spend time with my sister and family. It was awesome having some solid time with my niece and nephew. On the day of my last treatment Jonah (4) asked me if I was "done my cancer". Yes, little man, yes indeedy.

I have already launched into a full scale detox to try and give my body a chance to recuperate from getting bulldozed by a ton of toxic chemicals and radiation. Welcome to the spa of Julia. Where we eat enough green vegetables to sink a ship, refrain from any and all animal products, and kiss the Java and the snickers bar good-bye. Soy far soy good.  ;)

So the dreaded question for me right now is this one: What next??

You'd be surprised how often one gets asked this question upon the end of cancer treatment. I do understand how this seems to be a logical question. It's also the kind of question someone asks who clearly has never been through the kind of traumatic experience that turns your life a bit upside-down and causes you to question almost everything in it. (Either that or they spend a good portion of their lives in a significant state of emotional denial). I'm sure there are those who finish treatment, and it's right back to 'life as usual', but to be totally frank...I don't get that. So you won't be hearing " page turned, book closed, onward and upward, full steam ahead!!!" from me. I don't even know what that means for me anymore. I'm also an artist, so answering this question is hard at the best of times. Let alone after the big 'C'.

So here is the current Julia answer to that question. Note that this answer can change minute to minute:

What Next?

-I will get out of bed before noon. (if I feel like it!)

-I will drink plenty of water.

-I plan on eating lots of green veggies.

-I will go for walks.

-I will visit friends (when I feel like it)

-I plan on making soy lattes before bed!

-I plan on petting  the cat.

-I will rub my head and revel in the new growth.

-when fear of the future panic sets in I plan on stopping the mind circus and taking  a deep breathe.

-I plan on reading good books

-I will give myself permission to dream again.

So yeah. That is what's next.  I'll be taking my time with the whole recovery thang.

I also wanted to mention before signing off that I am THRILLED about my hair finally starting to grow back, even though it is slightly babyduck-ish. I also have eyebrows coming back in as well as eye lashes! You can't even imagine how exciting this is for me.

That's all for now. Huge thank you for all the support. I'll continue to post how things are going.

Big Love,

Your cancer free friend,

-Julia

Cindy Lauper and radiation

The above statement is so true. I had just such an awkward moment this week during one of my radiation appointments.

First let me set the scene. Every day I go into the radiation area, take off my clothes and put on the hospital gown and sit and wait till I'm called for my appointment. Then I am escorted into the radiation room where I lie on a glass table while the technicians put a mesh plastic mask over my head which is then nailed onto the glass table in order to limit my movement. The technicians then manipulate my body and make sure it is lined up properly with the machine which delivers the radiation beam. When they are satisfied they leave the room. I then hear a loud beep which lets me know that the radiation is happening. Then the glass table I am lying on is raised about 6 feet in the air while the machine moves around to my back where I get another beam of radiation. This whole process usually takes a total 15 minutes.

On this particular day, after the technician placed the mask over my face and head, and nailed it down to the table I happened to catch a glimpse of myself reflected back to me in the radiation machine glass which was directly above me. I was taken aback as I really did look like something straight out of a horror flick. I wish I could accurately describe what I looked like, and my subsequent dismay....as a friend said - it was a very "silence of the lambs" moment. Now I should mention that in the radiation room they play easy listening hit radio. Anyway, on this particular day, when the technicians left the room and I heard the ' beep' declaring radiation officially on, in the exact same moment I suddenly heard Cindy Lauper, with a sudden leap in radio volume, blaring:

"GIRLS JUST WANNA HAVE FU-UN...OH GIRLS JUST WANNA HAVE FUUUN...thats all they really waaaant....some fuuuun..."

I have to say that it was in that moment, as much as any other on this weird journey, that the absolute absurdity of my situation really sunk in. And I think I laughed out loud. Even though a tiny part of me felt a bit like crying. A minute later the technician came back in humming along with Cindi Lauper very un-selfconciously to herself as she lowered the table I was nailed to back down to the ground. As she removed my mask she asked me if I had any plans for the afternoon, we chatted for a minute then I went on my way thinking about the awkward irony and slight hilarity of it all.

On my way out I passed by 3 women in a radiation waiting room comparing chemo war stories with each other while perusing 'Canadian Living' magazines. There is something soothing about those conversations....the knowing looks and "mmm-hmm" are the truest sounds in situations like that. I almost wanted to join them, but walked out of the building instead, into the blazing sun.

Yes dear Cindy, girls do just wanna have fun. But some get radiated instead.

let's get...radiated!!!

It's a turn-around jump shot - It's everybody jump start

It's every generation throws a hero up the pop charts

Medicine is magical and magical is art

The Boy in the Bubble

And the baby with the baboon heart

-Paul Simon (from 'Graceland')

These really are the days of miracle and wonder. The fact that I can lie down in a big machine, have a laser enter my body, then get up and be on my merry way 10 minutes later is pretty dang unbelievable. Which brings me to the topic at hand: Radiation therapy.

So, as it turns out, radiation is a go! I'll be starting most likely the week after Easter and will have either 12 or 15 treatments total. The treatments last only 10-15 minutes and I will be having one treatment a day, five days a week. It will be done in Hamilton, and I will be staying with my sister during the week to cut down on all the travel time. It's pretty much exactly as I thought it would be so I can't say I'm all that disappointed. I was prepared for it. My radiologist showed me my "before and after' scans and it was pretty shocking how large my tumor actually was!! 8 cm! It is now almost undetectable other than some very small remnants which are basically the scar tissue from the shrunken tumour. Anyway, it is good to know that I am that much closer to the end of all treatment. If all goes according to plan I should be finished end of April or beginning of May.

Ottawa trip was great other than getting freaking PNEUMONIA!!! No Joke! The day after I got there I went in to emerg with some pretty classic symptoms, and knowing how low my immunity was I didn't want to take chances. As it turns out I was diagnosed with Pneumonia and given a crap load of antibiotics. So for the first week of my trip I was pretty much out of commission. Which of course I am used to by now! I definitely had a few days of wondering if I will ever feel well again. The good news is that it didn't take long for the antibiotics to take effect, and I did get some time with good friends and hanging with the parents which was great. Right now I'm actually feeling totally great...and not taking one minute of it for granted.

I also took a day of silence at a retreat house on the Madawaska about an hour outside of Ottawa and it was a highlight of my trip. While I was there I realized how much my mind has been racing in terms of thinking I should be farther along in recovery than I am. I clued in that I am not even done treatment yet and need to lay off putting pressure on myself! The general message was: SLOW DOWN. I kept thinking about a quote I heard a few years ago: "You can't push the river".

I guess that about does it for the update.

Word.

-Julia

Headin' down the tracks...

"All our lives we wait on trains." -R. Sexsmith

So as I write this I am periodically looking out my train window at dormant farm fields that speed past and look almost golden in the mid afternoon sun. I'm Ottawa bound, my friends. I'll be spending almost 2 whole weeks in the nations capital and looking forward to it. It's super strange to think that normally I would be heading into the hospital today for chemo...but man, oh man, am I ever glad that's not the case today! By the way, David Cronenburg is sitting five seats in front of me with his wife! I wasn't a huge fan of "A Dangerous Method". I won't tell him that.

Unfortunately I don't have many hard facts to update on other than to say that I had my CT scan last week which will tell me whether or not I need radiation. Unfortunately my radiologist is away for March break so, of course, I'll have to wait for those results. Am I surprised? No. The upside to this story is that my CT scan appointment was officially the shortest, quickest and easiest appointment I've ever had at the hospital thus far! I almost fell over when after a very short wait the nurse brought me in to the scan room, told me to lie down - boots on and all! I didn't even have to take of my scarf...and it took a total of 10 minutes!! I walked out of there feeling like the luckiest patient on the planet. Small mercies.Anyway, knowing the way things roll around in this crazy hospital appointment world, I imagine it will be the end of March before I find out anything concrete. "C'est la Vie."

So it's definitely been a strange 2 weeks for me. I think the fact that treatment is near finished has begun to really hit, and all of the energy I have put over what feels like many months into trying to get to the next treatment has drained right out of me and left me feeling slightly sad, overwhelmed, exhausted and rudderless. I'm beginning to see that these are some of the realities of "post-cancer" life - at least temporarily. I had heard a few people talk of this earlier on in my treatment and felt secretly happy and smug that I had so much "get up and go"...at that point anyway. Suddenly I totally understand what they were saying. Anyway, it's as if a giant to-do list has stretched out before my eyes and it doesn't have an end...it just keeps going and going. And I barely have enough energy to swing my legs around the side of the bed in the morning. Uh-oh.

Added to this is the sad fact that I now have selected items of what I like to call the "Chubby clothes". I hate this fact, and at the same time find it helarious. Losing the extra 15 pounds that I've gained is number 1 on my gigantic "to do" list. This could prove to be extremely difficult considering that yesterday I walked up a flight of stairs and thought that was it for me. Seriously. God help me.

Now I don't want anyone to think that it's all doom and gloom over here. There have been some brighter moments, and times of relief. This is all part of the big bargain, I guess. As Robert Frost so wisely put it: "The best way out is always through".

I also wanted to say a huge thank you again to so many of you who have been checking in and sending messages. I have truly appreciated it, although you may not know it by my apparent lack of communication. I have basically become a bit of a hermit over the past 2 months....please forgive me. Hopefully I'll get it together soon!

Much Love,

-Julia

Get your DANCE on....

Because it's the eve of my LAST Chemo!!!

Yeeeeeeeeeeehaaaaaaw!!!!

It's kindof like Christmas eve....but not.

It feels almost too good to be true. It's so hard to believe that after months (has it only been months?) of dealing with the effects of chemotherapy I'll actually be free! No more bloodwork, no more weigh ins, oncology appointments, no more needles, no more of that hospital smell that clings to me, no more hours and hours in the chemo waiting room, no more constant nausea, no more piles of meds, no more feeling like I'm in perpetual hibernation, no more anticipating the worst, no more waiting for life post chemo. My bizarre life as I have known it for the past 5 months is about to change..... again. Wow.

And it can't come fast enough as lately I am looking more and more like the stereotypical image of "the cancer patient'. It's that pale, sallow, no eyebrow, bald, dark circles under the eyes kindof look that prompts complete strangers to stop me randomly and tell me stories about their aunt/uncle/sister so and so who was just diagnosed with cancer. I'm then forced to stand there, smile and nod, tell them not to worry - that their sister/aunt/uncle will get through it etc. I have the definite urge to hide from the world lately for this reason. It's hard to blend in...and I've never been one that is big on the lime-light. Being the "Yes - I am a cancer patient" poster girl is not cool with me right now. Anyway, soon enough my hair will start growing back and I think when it does I might actually wear mascara for a month to celebrate my uber thick, luxurious eyelashes! This is big deal coming from someone who almost never wears make-up. It's weird the things that chemo will do to a gal!

The only major plans I have are to spend a good chunk of March in Ottawa to spend with the folks and friends. I definitely will welcome the change of scenery as I have been feeling like a prisoner of my home lately. I have spent most of the past 2 weeks in my bathrobe and slippers shuffling from room to room like a little old lady in purple. I swear I've gained over 10 pounds...I'm winded just walking around the block. Ah well.

So now I raise my glass (of green tea) to the end of chemo. Hip hip hoooooray!!

Peace to all near and far.

Over and out,

-Julia

Nupogen scoop

This post is in celebration of my final Nupogen shot! Hoorah!

So for those of you who have no idea what I'm talking about - allow me to enlighten you:
In basic terms - Nupogen is an injection that stimulates white blood cell count. When undergoing chemo the white blood cell count has to be at a certain level and if it isn't the treatments are too risky in terms of susceptibility to infection. The vast majority of people who are on the chemo regime which I am on are required to take this drug in order to stay on track with treatments. So the long and short of it for a huge amount of people on chemo is: No Nupogen no treatment.

Depending on the chemo regime, folks take between 4 and 7 injections in-between their treatments. I have been taking 5 injections in between treatments. I get up and haul my butt to the CCAC (community care access center) at the Guelph hospital once a day for five days and one of the kind nurses there gives me my injection.

The kicker: the major symptom from this injection is a "full body bruise" feeling. Like chemo isn't bad enough!! Anyway for 2 days or more my back, shoulders, arms, neck jaw are super tender and feel bruised underneath the skin. Good times!

The other kicker: This little vial that they prick you with which makes you feel like crap costs approximately 300 dollars a vial. Most people need approx 7 of these twice a month. You do the math. Keep in mind what I mentioned earlier - "no Nupogen - no treatment".

The irony: You may be wondering how a poor artist such as myself might be able to pay for this. Thankfully I'm not. Since I don't have any drug coverage I am saved by a government funded "compassionate care" program which covers ALL of my Nupogen along with other very expensive drugs that aren't covered by OHIP. If had any coverage at all - then I would have to pay whatever was not covered. For a lot of people who have partial drug coverage this can still add up to a LOT of money per month.

Don't get me wrong - I am beyond grateful that I am being covered for these drugs since, quite frankly, I have NO idea how I would be paying for it otherwise. It's just crazy to me that this shot for so many people, could be a matter of life and death, and somehow they have to come up with between $1500 and $2100 just to make sure they can continue their chemo treatments, depending on what kind of coverage they have.

It's definitely a bit of a mind bender for me. Then when I think of the stress of cancer patients south of the border...who have no government support and are facing a life threatning illness.
I can't even imagine what a truly scary prospect this must be for so many.

There was your little Nupogen tutorial.

So today I walked into the clinic and received my shot for what I hope was my very last time. Super amazing feeling.
I write this from bed, feeling a bit bruised but smiling large.

Good-bye Nupogen!! You served me well, but you shan't be missed!

A late Hafiz Valentine...

It's the day after valentines day, and yesterday I had my 7th chemotherapy treatment which means that, mercifully, I only have one more to go! I am so very relieved that this part of the treatment will soon be over. Yay. Anyway, my mom accompanied me to treatment yesterday and in honour of Valentines day (I know, I know it's a giant marketing play yada yada) we were reading one of my favorite sufi mystic poets from the 13th century - Hafiz. Master of Love. Anyway, here are a few that particularly struck me yesterday.

A happy belated Valentines day to one and all.

-Julia

The Day Sky

Let us be like

Two falling stars in the day sky

Let no one know of our sublime beauty

As we hold hands with God

And burn

Into a sacred existence that defies -

that surpasses

Every description of ecstasy

And Love.

Some Fill With Each Good Rain

There are different wells within your heart

Some fill with each good rain,

Others are far too deep for that.

In one well you have just a few precious cups of water,

that "love" is literally something of yourself.

It can grow as slow as a diamond

If it is lost

Your love should never be offered to the mouth of a

Stranger,

Only to someone

Who has the valor and daring

To cut pieces of their soul off with a knife

Then weave them in a blanket to protect you.

There are different wells within us,

Some fill with each good rain.

Others are far, far too deep

For that.

the eyebrow tribute

I had a lot of dates but I decided to stay home and dye my eyebrows.

-Andy Warhol

So it's that stage in the game where my eyebrows are becoming a mere shadow of what they once were. And my eyelashes. I'm beginning to feel like a freaky, adult size new-born....or something out of "Alien 5". One thing I find interesting is that you really don't think about your eyebrows too much in life until you start to lose them.

Having said that it suddenly occurs to me that I do know a lot of women who have spent many a painful hour plucking/waxing/fine-tuning their eyebrows. I was never one of these...and thankfully my eyebrows were never very unruly to begin with. All that to say that I haven't really given my eyebrows or eyelashes a whole lot of thought. Until now.

I find myself having some panicked moments imagining that my eyebrows won't ever grow back. This scares the living shit out of me. I'm too young to have to "pencil in" my eyebrows for the rest of my life! Seriously! It's bad enough I have a gigantic multi tiered pill box to deal with. This whole lack-of-eyebrow-hair thing is really too much for a 35 year old to take. I find myself glancing at random men sporting very Groucho Marx-esque eyebrows, beautiful and randomly sticking out and thick, and actually feeling jealous!

OK - things could be worse. Way worse. In fact, right now things are pretty dang fabulous. I am actually cancer free right now and feeling elated about it. It's strange though to still have to go through all of these small (and bizarre) annoyances.

Anyway here is my official good-bye (for now) to the eyebrows.

I'll never take you for granted again.

When your back I'll even take you to the spa and take good care of you.

Promise.

The coast is clearing...

Results are in....PET scan is negative: no detected cancer in my body.

One word: GRATITUDE.

How fitting that it was a beautiful, sunny springish/winter day today when the kind doctor walked in the office and handed me a now cherished piece of paper telling me the words I was so hoping to hear from him: Negative. I had been trying to prepare and strengthen myself to hear any possible outcome so I nearly jumped out of my seat for joy when he told me that the scan showed no cancer. So so very happy. I have had perma-heart, beaming-from-the-inside smile ever since reading the words: "No evidence of active disease". Every now and then I just have to pick it up and read it. How is this possible? For some reason right now it kind of boggles my mind.

So I wish I could also say that it's all over - but it ain't. Here is what may or may not happen next:

-I have 2 remaining chemo treatments (God help me!) on Feb. 14th (Happy Valentines day all you lovers out there) and on Feb. 28th. I will beg my sweet Oncologist to relieve me of my final two treatments. I know this will be a fruitless endeavour, but hey, you can't blame a girl for trying.

-On March 9th I have a CT scan which will determine whether there is any remaining mass in my chest which the PET scan can't show. The results of this scan will tell me whether I will need radiation. I am told that two thirds of people in my current situation do, more as a precautionary measure than for any other reason, so the jury is out on this one. I will get the results of this scan on/around March 11th. More waiting. Oh goody.

-If it turns out that I do in fact need radiation treatment it will start early April and last for 3 weeks, 5 days a week. The goods news is that from all i have gathered so far, radiation is a walk in the park compared to the rigours of my chemo regime. Of this I have little doubt. So bring it on, I say. Radiate the crap outta me if you must! :)

So there you have it. As you can see there are a lot of variables, and it may be the case that I will be finished all treatment as of Feb. 28th. Of course I will remain open to either possibility...but it would really ROCK if on the 28th I were freeeeee.

Anyway...the timing of all of this could not be any more perfect, as I have definitely been feeling like the runner of marathon reaching the end of her steam. I think I officially ran out about 5 or 6 days ago. This news def gives me that extra bit of "oomph" I will need to push through to the end of this absolute madness.

So please stay tuned...I'll continue to update. And I don't even know how to begin to thank all of you, known and unknown for all your kind thoughts, prayers, vibes, notes, emails, meals, cards and on and on and on.
There really is goodwill on the earth.
And sometimes things do go right.
And sometimes the PET scan does come out negative
and sometimes your disease disappears.

No. 78

It's not #87. It's #78. Get it straight.

small victory only a 2 hour wait till they stick me. or stuck me. i clutch my shiny red number. it's like a lottery ticket. shiny red lottery ticket. can you see the irony of it all in my tired half smile? barf. "Anticipatory nausea" is what they call it. if i weren't so sick and tired and sick of all of this waiting and vomit creeping slowly up my esophagus i might see the humour in it. i observe the man and his son across from me in the waiting room. i've seen them twice before. they are on my "shift". They always wait as long or longer than i do, they seem to have a quiet but close relationship....and the father seems somehow "resigned" to this process that he is undergoing. they talk "car talk". the father looks to be in his earlier sixties. they eat potato soup from the cafeteria and i like the smell. they're relaxed. I like them. who am I kidding though - I'm totally grasping at straws. It's a good past-time while my hands sweat and leave moisture spots on my lottery ticket. My number is called. No. 78. "that's me!!" i half yell and jump up waving my card. I head to the "Chemo suite" and leave the my jealous seatmates behind in the waiting room fog.

as soon as i get in the room i feel it. i feel the waves of nausea get bigger and bigger and loom larger and larger. And i am frustrated. and angry. and sad. i'm ashamed of myself for feeling nauseous and frustrated and angry and sad. I want to be strong. I want to be a warrior and a "fighter" and all that shit. I do not want to show any weakness in this room...but I can feel the vomit just sitting in my throat and I hear the machine that is filling me with poison/healing agents (?!) and feel it going through the needle into my vein...and i feel weak. very very weak. i feel the weight of the entire thing. the entire fucked up situation i am in. and it sucks. and i can't cry here. not now. not in this room around these people who may or may not be way worse off than I am. i can't do it. so i try so hard to think of something else. to repress it. but the tears start to come anyway. I try to hide behind the hanky and I feel like a bigger idiot. i feel like a coward. i wish i was stronger. oh the smell almost does me in - the putrid acrid smell of this room. I hate it. I'm such a baby.

it's finally over. No. 78 piles her shit in the car and goes home - barf bag in hand.
at this moment the remaining 2 feel like mount Fuji. God help me be strong.

A guide to killing time...

Welcome to a day in the life of "Yours truly" while I am undergoing treatment. I will now take you through a photo play-by-play of some activities I might engage in on a cold and snowy day such as this one. As you will see there is a whole lot time killing going on! BTW - the pill box you see above is the actual pill box that I now have to use due to the myriad of pills I now have to take. Talk about feeling 85!

Knitting!!
This beauty will eventually become a shawl for my mom. Knitting is something I've been doing waaaay too much of lately. It is the perfect killing time activity as you end up with something soft and comfy afterwards. If you need anything knit for yourself, a relative, a friend, a pet etc... let me know. Seriously....

God Bless the BBC.
If you feel yourself a sloth consider this and feel better: yesterday I watched 5 and 1/2 hours of this BBC series. Whats worse - it was made in 1976!!! That is the year I was born!!! You would think the "Duchess of Duke St" made in the late 70's would be intolerable on the boredom front...but I'm totally digging it. I find this both quite amusing and extremely scary.

Breaking out the tunes.
Alright - so I now have to admit that this photo was taken and nary a string was plucked. I have been ignoring this poor little instrument lately (it's that dang knitting I tell you!). Anyway, hopefully some day soon I will play a tune or two on the geeeetar, or Uke, or accordion, or something.

The super huge garden gnome puzzle.
This bad boy is a thousand teeny tiny brain numbing pieces. I didn't really grow up doing puzzles so this was a bit of a random purchase but it is amazing how completely engrossing and obsessive this can get. I'd highly recommend it! (Thanks for the inspiration, Kate!)

Reading, reading, reading...
In this case it is the Dictionary of Newfoundland English. My favorite. For the main-landers who are reading this - yes this is an actual dictionary. Look into it!

Meditateing...or...um...sleeping?
Lately they seem to be the same thing. Ah well. I try.

Tormenting the geriatric cat
Poor Kitty. These days she is often the target of my cabin fever. You can see it in the somewhat terrorized look in her tired old eyes. And yes, she does have seven toes. Poor old gal.

-------------------------------------------------------------------

So there you have it folks. It's been a challenge trying to fill my days with "low impact" things and not pluck my eyes out in sheer frustration in the process. Slowly but surely, though, I am surrendering to the process which, in this case, means giving up on doing many things knowing/trusting that soon enough I will be well enough to do them. This is an intense exercise in patience on many different areas: patience with my body and it's ability to heal, patience with myself and my racing sometimes out-of-control mind, patience with the discomfort and pain my body sometimes experiences, patience with the medical process and "system".

I think the hardest thing has been not having the energy to do the things I normally enjoy. Especially the small things I never paid much or any attention to before. I am finding that the farther I get in the treatments the bigger toll it takes on my body and I am forced to resign myself to at least a week of being house bound. It definitely gives me a new appreciation for people who experience chronic pain of any kind, or things that totally impede enjoyment of life. it is hard for me to believe now that some people go for many many years never having true relief! It is truly mind boggling.

I also came to the realization recently that for the past 4 plus months I have been basically in a survival mode. I'm not sure why or how this fact just struck me, but in realizing this I also realized that there will be an awful lot of processing going on when this is over. As I look ahead into the not too distant future it is hard for me to conceive of life going "back to normal". I have a hard tome remembering what normal is/was for me. Anyway - these are some things I've been thinking about as well.

The light at the end of this tunnel rests in the fact that hopefully I will be done my chemo treatments very soon! My last one should be on the 28th of Feb depending on the results of the PET scan and the CAT scan. Man - so many acronyms!! If these scans some back negative, meaning - the cancer is gone - this means my treatment will be totally finished!! I hope and pray that this is the case.

Last thing - for those f-book folks who have been asking me about good books I have been reading: my favorite series right now is a 4 book fantasy series called "Game of Thrones". I'm usually a Can-lit kindof girl so this is way off what I would normally read - but these are amazing and totally great for escape.

That's it that's all.

Again - many thanks again for all the amazing messages I've been getting. I've been so blown away by all of the people who have been getting in touch with me...thank you for all your thoughts.

much love and peace - julia

remaining vulnerable

It's a grey and rainy evening here in Guelph town and I am yearning to see the blinding whiteness of sunny, snowy, crisp days that are the usual for mid-January.

I miss winter.

Anyway, with all the spare time I have these days I happened upon an old journal entry from 2009. I was shocked at how appropriate it is for me at this point in my life.

Here it is:

Remaining vulnerable

Try not to harden against that soft spot inside.
Let it grow.
Don't be afraid.
Cultivate the feelings of rejoicing
both for yourself and for others.
Try to catch when you are closing down on yourself.
Stay with the vulnerability in whatever kind of feeling you are experiencing.
Trust in the fundamental openness which is your true nature.
Train yourself to stay in the present... where the joy is.
It holds the root of your happiness.

So there is my contribution for the day.
Peace out,
-Julia

On Baldness, and Christmas and stuff...

I'm Bald!!!!!

So now that I have your undivided attention....Happy New year!!!

It's 2012. Hard to believe. I have mixed feelings about saying good-bye to 2011. It was an amazing year for me in many ways. I got to do what I love to do for an absolutely amazing theatre company with people whom I truly love and respect. I couldn't have asked for more. Here is a plug for the most beautiful show that, fortunately, I was well enough to attend in December: http://www.jumbliestheatre.org/upcoming/like-an-old-tale/ Unfortunately the show is now over, but check out this amazing site anyway...it represents the culmination of almost 3 years of work for me and my beautiful and talented colleagues, as well as so many beautiful and inspiring community members.

The end of 2011, however, was obviously much more difficult, and I have to say that it won't be hard to to 'bid adieu' to the past few months of the "cancer grind" (with the knowledge that I still have half a mountain to climb). Please, 2012...be kind.

So the latest on the treatment front:

-This Tuesday I finished my 4th chemotherapy treatment which means I am officially half way through!!!! HOORAY!!!! This is a pretty major milestone...just knowing I am over the hump is a big deal.

-I have a first radiology consultation next week in the case that I need to have radiation after the chemo. I am crossing all fingers and toes that this is not the case. But "Que sera, sera".

-My P.E.T scan is scheduled for Feb. 6 which will basically tell me exactly how my progress is going, whether the chemo is doing it's job and whether I will need radiation as well. Quite a lot hinges on these results, but I am more than ready to get whatever news and get on with it....as they say.

In other news, I was overjoyed to have been able to spend Christmas with my family in Ottawa. It was looking a little precarious there for awhile, but thankfully all worked out and I had an amazing 2 weeks being pampered by my parents and friends. And to top it all off, my cousin had her beautiful baby girl while I was in Ottawa...Isabella Jean. What a perfect gift for the holidays!

Speaking of perfect gifts....I bought myself a sweet little parlour acoustic guitar as a gift to myself this year. I'll post a pic sometime soon.

One other major highlight for me was making up impromptu songs (complete with actions) with my niece and nephew. My 3 year old nephew decided the first song would be called "Kitty pooped her pants" (Kitty is the name of my cat), and the other song he decided would be called "Big Bald Head" (of course referring to mine!). So we had a concert where we sang them both...to a somewhat astonished little crowd. In a word: Hilarity.

Anyway, I truly hope this year holds wonder, excitement, deep fulfillment and is 100% Cancer free for all of you!!! I'm learning a whole heck of a lot right now, but one of the major things is: Enjoy the moment. It really is all we have. The "right now". Make it count.

I also just wanted to say thank you again to all of you for everything, and bear with me if I haven't gotten back to you. I guarantee your name is written down in my planner...too many lists!! ;)

Big Love, Julia
xo