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.