Out From Under

Beloved and I just celebrated our seventh wedding anniversary. We were married in 2004, whilst I was in the middle of my first treatment for breast cancer. I was bald, just out of surgery, sick from chemotherapy, but we were determined that cancer wasn't going to stop us from starting our lives together as husband and wife. And with lots of loving help from my mother-in-law, we pulled off what I think was a pretty perfect wedding, given the circumstances.

Fast forward to this past weekend, our anniversary and here I am bald and sick again.  The little crop of hair that had somehow miraculously sprouted over the first part of the year, giving me hope that at least I was going to be spared the hairless indignity for a bit decided to fall out in tufts. So once again I sat in the little green chair in our garage, whilst Beloved shaved my head with the clippers that we keep for what now seems like a regular occasion.

Happy Anniversary to us.

This week I finally finished my emergency course of radiation. It's been a very long haul and has taken a lot out of me. Think transformation into a very old woman very quickly.  I've seen some small improvements in my hand, but wont know really whether it will continue to improve or not. Only time will tell. Or whether the radiation has indeed stopped the progression in the nerves to stave off any more damage. Nor whether the next new chemotherapy will work, or for how long, or for what gain. We just don't know. Nobody knows.

The thing is every time I think about my cancer, I feel like I need to make some profound statement to keep raising hell about the state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with. But I'm really just getting to the point, where there's no bigger statement that I can make other than this is just my damn life and I'm deeply unhappy about it.

This cancer just directs every part of my life. It keeps me a slave to medications and their schedule. It keeps me a slave to the side effects of the medications. It keeps me a slave to the energy I have on any given day. It keeps me a slave to how I look and feel. It keeps me a slave in a body that I no longer recognize, a hand that no longer works. It keeps Beloved and I slaves to the next bit of news from the next batch of tests and scans. It keeps us slaves to the constant threat of the unknown, which as we keep learning, can change our lives profoundly in an instant.

And it keeps me a slave to the thought that we are just never going to dig ourselves out from under this.

And that's about all I have to say right now.

Planet Unicorn

Ducking, running, weaving, bobbing, falling down, getting back up, managing, adjusting, adapting, screaming, world shrinking, confidence eroding, always moving, always shifting expectations. 

 That's the game of living with metastatic cancer of any kind.

It's been almost two weeks since, after months of excruciating pain, I awoke to find my left eye had drooped and my left hand had become almost completely paralyzed due to my breast cancer.

Since that time I have been receiving emergency radiation, which has sapped me of a good deal of my physical energy. I've also been spending a lot of time lying around contemplating this new reality in which I find myself, staring into space and feeling sorry for myself and wondering how I can possibly move forward and face the next moves in this evil game of cat and mouse.

I feel trapped in a body that I no longer know. I don't see myself when I look in the mirror anymore. I see someone getting tired and old before her time. Tired of constantly getting hit in the head, and constantly pulling myself back up only to be hit again. The toll on my body, mind and spirit is definitely starting to show.

I'm having trouble adjusting to the thought that I'll never really be able to use my left hand again. The hand feels like an alien piece of meat attached to my body and no longer obeys my brain's commands. I think I might be mourning it's loss, and the freedom that it's use offered in being able to live my life in the way that I liked to do. It's loss takes away from so many enjoyments that I don't think even yet I've fully begun to experience or contemplate. I think I might still be in shock over this.

I want to scream, I want to beat my fists. I hate that this has happened. I hate what this wretched disease is doing to our lives. There is nothing about having cancer that has enriched my life - nada. It just takes, and takes and keeps taking. Every time there's a new crisis, Beloved and I must take stock again, to see what we are left with and keep the faith that we'll be strong enough to get through whatever else is being served up. How so markedly different our lives are to our peers. We may as well live on another planet in another dimension entirely, our lives are so far removed from what most people could ever imagine. It just all makes me so sad and angry truth be told. It's simply not fair.

And so now the question becomes as to how long it's going to take me to bounce back mentally from this latest catastrophe and assault to my confidence. Somehow I have to psyche myself back into the the chemo chair. Be a strong and "empowered" patient. Find some blind faith, tempered with a bit of hopeful reality, to try and ignore the fact that at this point we're just going down a list of treatments with the understanding that there is little likelihood of a cure or indeed any guarantees of my ultimate prognosis. More chemotherapy to erode my quality of life just a little bit more. Waiting for the next scan to see if there's any improvement. Or not. Then whatever the next move is after that. Then the next crisis. And so it just goes on. Ad nauseum. No breaks, no end game, just a relentless and exhausting tedious cycle of heartbreak and devastation.

Trouble is no one really wants to hear any of this.

They want to hear that I'm feeling better. That I'm coping with the loss of the hand. That treatments will work for me. That people with metastatic breast cancer can "do well" for a very long time. That I'm feeling more positive about things. That I can get through whatever this disease throws at me. That I'm continuing to fight. That I won't ever give up. That I will remain hopeful, no matter what.

Yeah, yeah, yeah I hear all of that, but right now I'm reserving the right to wallow because I need to. My brain is just lacking the emotional and physical energy to do much else right now. Perhaps it's just switched into self-preservation mode, whilst the rest of my battered body tries to catch up.

I just want to tell the truth and surprise, surprise life isn't all fluffy pink unicorns dancing on rainbows, no matter how much I wish it were.

WTF

I'm sitting here listening to the latest news of Hurricane Irene.

Thing is though it seems like we've already visited the eye of the perfect storm earlier this week. And an earthquake! Seriously!

After a disastrous trip to Colorado that we had to cut short and come home, I woke up last Saturday with a newly droopy left eye. This, along with escalating pain and decreasing function to my left arm which I've chronicled here before. After calling the doctor and trying various pain killing medications, the decision was made to admit me to hospital in an effort to control the pain and try and investigate the sources further.

Oh and I should also mention too, that by Wednesday morning I woke up to find my left hand was now almost completely paralyzed. Essentially a piece of meat. So this is on my mind as well.

After being subjected to a battery of tests, the doctors concluded that these latest issues have come about through new skin metastasis and infiltration of the nerve line controlling my left eye and arm. No mass to speak of, but a shadowy specter moving across important nerve lines is what it looks like on the scans. A "coating" of the nerves if you will. Hands up who knew breast cancer could do this?

So I've now changed chemotherapy regimens and am undergoing an emergency course of radiation to at least try and reverse some of the nerve damage to the hand, in the vain hope that I might be able to regain some function beyond what is essentially a fairly useless lobster claw at the moment.

To be honest, I'm just feeling very tired and a bit overwhelmed right now. What does this all mean going forward? How do I cope with the complete loss of the hand? How will I make dinner, something I love to do, amongst other things. How will I ever wear another article of clothing that's not an elasticated waist, or doesn't have buttons? I know I'm not the first person this has ever happened to and who deal with much worse, but still, it just seems like a lot to have to think about and I can't quite get my head around it.

I don't really know what to say at this point. As a friend quipped this week my life seems to be reading like a bad movie script. New mets, chemo, hospital, earthquake, radiation, paralysis, hurricane; did I miss anything? Locust plague, Armageddon?

But in the spirit of my usual rants, here are some assorted Why/What The F$cks that stayed with me after this week's escapades;

WTF

• If I'm in hospital with an accessed port hanging out of my chest, WTF is a nursing assistant rooting around in my arm for a vein to draw blood from me at 4am in the morning? And why am I arguing with her?

• Ditto for my MRI tests. WTF was no one available to access my port to inject the MRI contrast?

• When I'm whacked out on pain medication it's very difficult to have a serious consultation with a specialist doctor. Also don't be surprised if I insult your work. I'm off my face! WTF?

• Pain medication causes severe constipation. WTF is it so hard in the hospital to get anything representing one of the main food groups and anything that might resemble food fiber? Shouldn't a nutritionist on the oncology ward be making some automatic decisions for you about food choices, since you're so whacked out you barely know your own name, let alone think about whether you should eat broccoli or spinach. But I do want to point out that the hospitals Dunkin' Donuts was open 24hrs! That's good because I needed a jelly donut!

• When I got home, all I could think was that I didn't have enough clean underwear to last me through the hurricane. WTF am I worrying about this, my beloved asked me? I don't know I just am! Note to laundry gods aka Mother in Law. Thank you for curing that little WTF!

• When doctors say that chemotherapy is "well tolerated", particularly in the metastatic setting, WTF does this really mean? That you might be able to get out of bed if you're lucky? That it won't necessarily kill you? What does survival with metastatic breast cancer really mean anyway?  Seems like the same issue's on The Assertive Cancer Patient's mind as well this weekend....

• If we're serious about downgrading breast cancer to a "chronic" disease, then WTF aren't we pulling out all stops to understand and treat metastatic breast cancer. Because this is the one that really F$cks you up, and then likely kills you.  

Hurricane indeed. Yawn.

P.S. Just in case this post isn't clear, I'm now at home and resting comfortably.  Latest crisis being dealt with.

Am I A Tough Girl?

They say there's no such thing as bad publicity, but recently my other blog Can-Do Women, was mentioned by Huffington Post contributor Peg Aloi, in Tough Girls: Do They Still Exist?


Apparently there's a dearth of tough "gals" out there and women are simply "girly" again.  And "the blogosphere proves it!"

Peg writes;

Maybe it's the "new" (crappy) economy, or our fear of the imminent zombie-vampire-Tea Partier apocalypse, or the realization that teaching our kids self-reliance instead of whiny entitlement really is the best approach to parenting, but there's so much emphasis on, well, ultra-femme domestic activity these days. This weird retro world of cooking, heirloom tomatoes and Jane Austen is starting to feel a bit smug and smothering. Where's the fun?

My blog's mentioned under the auspices of "heirloom tomatoes" and whether this is "fun"?

Well readers, you know I couldn't leave well enough alone.  Here's my retort to this brassy little article;

Thank you for mentioning my blog under the auspices of "Heirloom Tomatoes" (www.candow­omen.wordp­ress.com) in seeking to answer the question of whether tough girls still do exist? 

 Funny, I've never thought of myself as particular­ly "girly" or indeed "anti-femi­nist", although I do love to cook. And in answer to your question as whether I may personally qualify as tough? Before you or your readers judge me, perhaps I should include a link to my other blog; the one where I blog about my life as a women in her early forties dealing with metastatic breast cancer (see http://can­cerculture­now.blogsp­ot.com/201­1/01/can-d­o-spirit.h­tml) 

Your post reminds me that both my blogs have been sadly neglected of late due to all the "fun" my illness has been serving up to me, leaving with very little time, ability or gumption to pursue the things I really like to do. Like being a tough bad-ass breast cancer activist blogger, as well as someone who enjoys a bloody good heirloom tomato.

 Tough "gal"? You be the judge.







Courtesy of Past Expiry Cartoon

Another Year, Another Burger

Today is my 41st birthday.

The Burger King

When I was a kid I used to be a member of the Hungry Jacks Club (that's Australian for Burger King, folks). Right on time, the Burger King himself would write me a birthday letter and send me a years worth of vouchers for a free sundae, fries, whopper junior or whatever. And during the month of my birthday I could go in and claim my birthday gift. A free Whopper! It was so exciting to a ten year old girl, back in a time when going out for a junk food dinner was a special treat to be savored, and dreamed about for another year.

Now however, it seems my birthdays are officially sponsored by the American Cancer Society.

No special birthday letter, no vouchers for free stuff (would I really want  ACS swag anyway?), instead just a winsome melody from the likes of Harry Connick Junior, a heartfelt bleating by Justin Bieber or even a comedic message from Jack Black.  All with faces that say "Aw, it's your birthday and you have cancer. Poor you."  Gosh, I can't wait.  (Editors Note: In case my facetiousness is not clear here, I don't want a special ACS-branded message for my birthday thanks!)

I'll be starting my day off right with a celebratory hit of chemotherapy. Perhaps I'll yell out "chemo for everyone!" and we'll pull up our IV poles, gather around my Lazy-Boy chair in the Lazy-Boy-Showroom-From-Hell, and sing a stirring rendition of Happy Birthday to me. (Proudly brought to you by the American Cancer Society).

I guess turning "41" generally passes without fanfare, a bit like "14", "23" and "32", plus all those other ages in between.  It's not really a milestone birthday like "1", "13", "16", "18", "21", "30" and then the BIG 4-0.  But "41" is  a gentle reminder to start fielding jokes about getting old and complaining about turning "50" all too soon.  Middle age beckons!

I've begun to count birthdays.  Seven birthdays since original diagnosis, four birthdays since a serious bump in the road, and two birthdays since we encountered a major pothole. Perhaps my turning "41" might be a considered a milestone of sorts by the statisticians, but I think I'd just as soon as not consider turning "41" a milestone, thank you very much.

I'd also love to start complaining about turning "50" and the onset of middle age.

And I'd also prefer my birthday wasn't an event worthy of sponsorship by a cancer organization, unless of course it involves a free hamburger.

Happy Birthday to me!

Whoot!

My 2nd Birthday!

My 4th Birthday.
Love my outfit!

Look At Me

"You just wouldn't know it to look at you",  clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond.  The thing is, pain is for the most part invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion.

My friend Being Sarah, author and fellow blogger sums it up perfectly in her book of the same name, Being Sarah;

"Breast cancer can be like this, you don't look ill, but you feel maimed and emotionally depleted."

Actually,  I'm quite sure this is true for most cancers and other debilitating illnesses.

But I'm definitely feeling maimed and rather emotionally depleted right now.  I do seem to be caught in that never-ending cycle of one-thing-after-another. For the first time,  since my magical train journey through pink lollypop land began way back in 2004, I've begun to experience side effects from the cancer that resides uninvited in my body.

Up until now, most of my ailments and other physical complaints, have been (in)directly attributable to treatment. Surgeries, radiation, chemotherapy have all brought with them a wonderfully diverse and at times surprising cornucopia of side effects. And generally I've been able to take medication or adjust treatment to combat these side effects, be it pain, nausea, vomiting, fatigue, neuropathy, gastrointestinal upsets, hair loss, low blood cell counts and associated conditions, weight gain, weight loss, allergic reactions, unidentified-but likely-battered-immune-system-induced-afflictions, mood swings, hot flashes, night sweats, etc.  You name it I've probably had it and I've dealt with it one way or another.

Unless we're talking about hair loss, I doubt anybody would know to look at me that I was experiencing any of these side effects. Unless I tell them.

But now I find myself in a different pickle. The cancer has determined to stealthily work on robbing me of the use of my left (and dominant) arm.  Symptoms have been very slowly appearing over the last few months, but have started to escalate recently, defying the logic of my last scans which showed my disease to be stable.  Exactly how the cancer is accomplishing this theft of a much loved limb, is a hotly debated mystery soon, we hope,  to be unveiled by the wonders of high resolution MRI technology.  (Please no armchair diagnoses here, thanks!)

I can still use the arm, but now only in a quite limited capacity.

Tingling finger and arm nerves.

Numbness that is slowly taking over my hand. One thumb and two fingers now offline.  And half an arm.

Depleted strength and an almost atrophied set of upper left arm muscles.

Upper back muscles constantly firing and twisting themselves into knots.

Constant nerve pain running down the entire length of my arm.

Frequently interrupted sleep and pacing the house until painkillers kick in to coax me back to sleep.

Daily tasks now requiring assistance, adaptation, or not performed at all. So far the list includes cutting things, like the pork chop in the restaurant the other night, fastening the straps on my favorite sandals, handwriting, toothbrushing, eating with a fork or chopsticks, driving, lifting my dog, grocery shopping, laundry and so on. Things are starting to slip. Many of the day to day activities that I used to enjoy, are now tarnished by this pain and loss of strength and dexterity, and I can feel the slow decline of function with every passing day.

Luckily,  I have a good support system when it comes to third party assistance. But I hate to ask. It makes me frustrated and angry. Why do I need to ask my beloved to cut up my steak, like a small child? Why do I need to ask my nearly-senior-citizen-bless-her-heart- mother-in-law to help me with household chores? Shouldn't it be the other way around? This seems to be against life's natural order.

But the loss I am feeling the most keenly right now, is my inability to type with both hands, and sit at the computer for any length of time. This only aggravates my pain level. But I'm a full-time blogger, I regularly tell my doctors. How can I blog with this pain? How can I blog if I lose the use of my arm? How will I cope?

And so, I find myself exploring different ways of coping, read blogging.  One-handed on an iPad seated in a comfortable chair (working pretty well I would say), voice recognition software (not so much), video blogging (maybe!).  Trying hard to concentrate under the fog of medication, the ever present chemobrain and constant nagging pain. Wondering if we can identify the source of the pain and treat it with a palliative dose of radiation, or something.

It's getting more difficult, and I'm definitely slower and I DO need some assistance.  I'm certainly grumpier, frustrated, scared, and in pain, but you wouldn't know it to look at me.

Chest Pains

Prologue:  This is a piece I wrote back in May 2011, several days after a second visit to Pink Bank Hospital emergency room in a matter of months.  This was very hard to write, and has taken me quite awhile to decide to publish it.  But there's something I want you to know........... 

Penned: June 1, 2011

I want to write about what happened to me last week. I don’t know if I can do this publicly.

It scared the crap out of me.

My husband was  away on business trip.  I was by myself.  It was Thursday afternoon. May 26, 2011.

Feeling a bit tired, I lay down on my bed and napped for about an hour.  After waking,  I got up and felt a pain in my chest area.  Sort of like I’d been sleeping in a weird position and the muscles had yet to properly straighten out.

But the feeling didn’t go away.  In fact it started to escalate.  My chest tightened, I began to feel slightly nauseous, and it hurt when I breathed in.  My abdomen became swollen and I felt full despite having eaten very little that day.

I started to feel very frightened.  Much of what I was feeling, was similar to how I felt back in March when I had the heart issue.  But this was different,  in that now my breathing seemed to be involved in a way that was painful.

I sat on the couch trying to convince myself it was nothing.  But experience told me otherwise.

I debated who to call first.

Since my husband was away, the closest people were my in-laws.  I knew that they would jump to it, and do whatever I asked.  But all I could think about was how much my call was going to freak them out.

Then I thought about calling my friend who is a nurse.  But she probably wasn't home and I didn’t want to leave her a message.

I realized my doctor’s office was now closed, but I could reach the on-call doctor.  I reached the answering service and when they asked me the problem to relay to the doctor, I heard myself say “chest pains”.  There, I’d actually said it.  Chest pains.  Then I started to cry.  I was alone and I was frightened.

The on-call doctor telephoned me within about five minutes.  Chest pains? Yes. As he was questioning me I broke down and cried like a blubbering mess.  He was calm and very nice, and quietly suggested that I needed to get myself to the emergency room and did I have someone to drive me?  Yes I did.  He said he would call ahead and let them know I was coming. Chest pains.

My mother-in-law arrived and we immediately set off.  She was driving like a maniac and kept asking me how I felt.  Chest pains? How are the chest pains now? I had to tell her to stop talking, slow down and just get me to the ER in one piece.  We drove the rest of the way in silence, whilst I sat there quietly freaking out. Chest pains.

Upon arrival at the ER I said “I have chest pains” and I was immediately asked to fill out paperwork.  Thinking when you are in this state is almost impossible.  Then they told me to take a seat and wait for the triage nurse.  But I’m freaking out, I have chest pains.  Please take a seat.  I sat near the station desk, and heard them talking about me.  I had become Chest Pains.  Not a person who is extremely upset and frightened.  Chest Pains.

After what seemed like an eternity but was probably only five minutes the triage nurse called me in.  Take your purse off my desk she chided me.  Then the questions.  The jaded questions.  Chest pains? Look at the smiley face chart.  Describe your pain on a scale of one to ten.   Describe your pain. DESCRIBE YOUR PAIN PLEASE.  I break down and sob.  I can’t speak.  I don’t know.  All I know is that something is very wrong.

Something inside the nurse softens.  Honey I’m sorry I know this is hard but we’ll figure this out.  I’m just going to write that you’re at a “9”.  Chest Pains is at a Nine.  Now I’m going to try and find you a bed.  Makes a call.  I have Chest Pains here who’s at a Nine, can you please clean out Number 6 for her.  Chest Pains. Nine. Number 6.  Where am I?

Now she feels really sorry for me and walks me back into the ER.  Number 6 isn’t ready, so I am placed on a gurney in the hall.  Chest Pains?  Yes.  Monitors are attached.  Number 6 will be ready soon.  Please go to the bathroom and put this gown on in the meantime.  I leave my underwear on.

I wait.  Two hours later I am shown to my “room” and I become Number Six.

More monitors.  More needles.  More Doctors.  More Examinations.  No Answers.

11.30PM.  Number 6? Chest Pains? Cat Scan? Yes.  Finally some answers.

1AM.  I hear the Doctor discussing my case.  Number 6? Chest Pains. Yes.  Cat Scan.  Less than 10%.  Good.

1.30AM.  Doctor stops in.  You have a small partial collapsed lung. A pneumothorax.  We’re going to keep you on oxygen overnight and watch you.  We hope it will just correct itself.  We don’t know why it’s happened but it doesn’t appear to be lung mets.  This is good news.  It could have been much worse.

Much worse.  Yes.  That’s true.  Just not today.

2AM.  Would you like a sleeping pill? 5mg or 10mg? 5mg please. Number 6. Chest Pains. 5mg.

8AM. Number 6? Chest Pains? Chest X-Ray.

9AM.  Dr Cuteness appears at my bedside and takes my hand.  Rachel I’m sorry you had to go through this. I don’t know why it happened.  You can go home now and I’ll talk to you on Wednesday.

Rachel.

The first time since the ordeal began that anyone called me by my first name in a way that connected me with what I had just gone through.

Rachel. I had chest pains.  I had a partial collapsed lung.  I have cancer. I am scared.

MY NAME IS RACHEL.

Epilogue:  The pneumothorax was small enough that I did not require a surgical intervention and so far appears to have healed on its own.  

Anna Rachnel is a pen name I created for myself when I first started blogging in 2009.  I was reluctant to reveal my real name due to a severe case of cyber-paranoia.  As the blog became more widely read, I started to question whether to keep the pen-name.  

What purpose was the pen-name serving, other than as a kind of security blanket?

Today it's time to shed the security blanket.  I have found my virtual identity.  I have found community.  I have found friendship.  I have found trust.  

Anna Rachnel has served her purpose.

My name is Rachel.  Rachel May.  I am named for my great grandmother.

This is me.  Rachel May.  June, 2011

Let's Talk!

I'm still kind of on summer hiatus, but can't keep away from the blogging for too long.

On Monday night I "attended" a Tweet chat on Twitter called #bcsm (Breast Cancer Social Media).   Basically, it's an hour long event on Twitter every Monday night at 9pm EST, and is attended by anyone who's interested in talking about breast cancer.  If you missed it or would like to know more, here's a round-up and transcript of last Monday's chat by @jodyms who co-hosts and blogs at Women With Cancer.  You can join the chat just by adding #bcsm to your tweets,

One of the really great things about this forum, is that it's also attended by health care professionals, and is a fabulous opportunity for patients, like me, to connect with these folks in a forum that doesn't involve an invoice or a fight with the health insurance company.  It's really interesting to get a perspective from the "other side of the desk" so to speak and to also share mine.

After the chat, I read the transcript and was struck by a comment from one of the doctors in attendance.

More and more oncologist see Stage IV as a chronic disease that one can live a really long time with -- QUALITY TIME #bcsm

Let me just preface by saying that I completely understand that the comment came from a place of kindness and compassion, perhaps to try and ease the fears of those in attendance who are living with Stage IV disease.

But on the other hand the comment did cause my blood pressure to spike somewhat.


Is this really the belief of most oncologists? Because if it is then then I'm putting my hand up to say that there may be a DEEP chasm from what oncologists believe to what metastatic cancer patients are really thinking.

Firstly, I don't see metastatic breast cancer as a "chronic disease".  I believe that to refer to it in this manner does a huge disservice to the work of the metastatic breast cancer advocates.  The "chronic disease" argument invalidates our concerns about current treatments and our very real fears of dying of breast cancer, and completely hides the fact that metastatic breast cancer patients still do not have a game changing drug designed to specifically prevent initial and new metastatic tumors. And the same could be said for many other Stage IV cancers actually.

What we do have is a long list of incrementally and temporarily successful drugs designed to shrink tumors, none of which provide a cure, and none of which are known to actually prevent new metastases.  The drugs buy us time, more for some patients, less for others, and there is no way to know which one's will actually work, for whom, and for how long.  So we just keep working down the list of drugs until we perchance get the miracle of N.E.D. (No Evidence of Disease), or as is more likely, we exhaust our options and then say enough is enough and end our lives apparently and invariably with "grace and dignity".   Is this really what "chronic disease" looks like?

In the metastatic breast cancer setting,  how is a "really long time"defined and what does "quality time" really mean?  I suspect that if a patient were asked, their definitions and understanding of these terms might be wildly different to that of their medical team and indeed that of family and friends.

"A really long time" in the world of chemotherapy drug development is termed "overall survival" and is generally measured in months, not years.  To the statistician, a metastatic breast cancer diagnosis might mean average survival of about three years.   To the actual patient, we say "screw statistics" and hang on for dear life to the belief that we're going to be the ones who beat the odds.  And some of us do, but there's also many that don't.  For me, the question of what a "really long time" looks like is something I prefer not to dwell on.  Hopefully it means years, maybe even a decade or two or three, but no one really knows.  I just hope that it is a "really long time".

And "quality time"?  Quality time to me means

• not having to go to chemotherapy every week
• not having to obsess over my bowel movements
• not having to wrangle with Nurse Ratched or Nurse Useless
• not having to deal with mystery secondary illnesses that of course could not possibly be related to cancer treatment
• not having to worry about cascade side effects of drugs taken to combat chemotherapy side effects and cancer symptoms
• not having to waste time dealing with health insurance and billing issues
• having a left arm that actually works and doesn't cause me pain 24/7
• having hair to brush and style
• not having to be ruled by an alarm clock and pills that must be taken on time
• not having my life put on hold every three months whilst we wait for scan results
• being able to sit in the sun without having to worry about chemo-induced sunburn
• being able to go on vacation without having to think about proximity to hospitals et al
• not having to ask family members to help me with household chores and grocery shopping
• not having to worry at forty years old, about the same issues that concern senior citizens
• having the energy to stay up past 10pm
• not having to worry full stop

Now there may be many of you who disagree with my reaction to this particular comment.  And that's fine.  I welcome the discussion.  We can all learn from each other.  So let's keep talking about this.  Let's add our voice and be heard in forums like #bcsm.   Hope to "see" you there for the next chat.

Every voice matters.

Now back to summer hiatus and some QUALITY time !

Summer Break

Just a quick post to let you all know that I'm going on summer hiatus for a few weeks starting today.  I have friends coming to visit which I'm really looking forward to.

So it's time to take a break, catch my breath, relax, enjoy the summer and go and have some fun.

Yes "fun", something that's been in short supply of late!

I'll be back soon to the blogging with attitude, and will still be lurking in the cyber-hood.

Before I forget, you have two homework tasks for June:

1.  Tell us about your "Other Life" for Journeying Beyond Breast Cancer....blog it, tweet it (cc to @jbbc), comment on JBBC's blog, or send her an email at beyondbreastcancer@live.com.  She'll be publishing snapshots of our wonderful community after June 30, so you still have plenty of time.

2.  Are you a poet and you just don't know it?  Don't forget to submit your entry to the Pink Ribbon Blues Poetry Jam.  And prizes will be awarded, plus fame and glory when your entry is published on the Pink Ribbon Blues blog.  Entries close June 30!

Back soon!

Blog mascot is ready for summer vacation as well!

Re: My Other Life

Today I'm veering off the beaten track of databased rants, railing against all things breast cancer and general pink cultural disruptiveness, in favor of a writing assignment set by Marie, author of the excellent Journeying Beyond Breast Cancer blog.

So this one's about My Other Life.  You know,  that life outside of breast cancer.

Let's start at the beginning shall we?  I was born in 1970 in Perth, the capital city of Western Australia.  Australia's a bloody big country and Western Australia is about the size of Texas, with a population of a little over two million people.

Source: http://www.thewaguide.com/en/westernaustraliamap.htm

A recently discovered photo of me and
my naughty little sister,  circa 1976

I'm the eldest of three children, two girls and a boy.  My younger sister  Tarn, epitomized the protagonist, from the "My Naughty Little Sister" series by Dorothy Edwards, and was my beloved nemesis growing up.  We were three years apart in age, and what strikes me looking back at old photos, is that we were always photographed together.  Even though we were constantly fighting  and jostling for attention, it's always me and her together.   Truthfully,  as we got older we drifted apart.  We were very different people and she led quite a troubled life.  Tragically she passed away in June 2007 at the age thirty-four.  I don't think I'll ever really get over losing her.  She was a part of me.

My really cute Granny
with baby brother circa1976

My younger brother now lives in the U.K. We see and talk to each other often.  I adore him and love nothing better than just hanging out and talking about ridiculous things like Australian politics, ghosts, aliens, cryptozoology, annoying people and anything else that takes our fancy.  He likes the odd rant too.  Although he's now 35 years old, I still think of him as four years old. And treat him as such.

My Dad's a character.  He's an old Communist from way back who's living out his retirement in the tropics learning advanced Russian, and harboring dreams of a visit to North Korea at some point before he dies.  He also enjoys a good rant any day of the week.

Ranting?  Does that sound familiar.  Yes, along with the BRCA1+ gene,  the ranting gene is endemic in our family.  My Grandfather also had the gift of the rant.  As children, when we visited we knew to avoid certain trigger words.  Like "hello", "How are you", "It's a nice day". Lest we be subjected to professional ranting, the likes of which I can only aspire to.

My Dad in 1976.  At work. He was a
soil technologist and was averse to T-shirts!

Growing up in Australia was great.  I highly recommend it for any child.  I don't really remember ever being indoors, and a family holiday for us was a three-day drive in the old family Kingswood, sleeping in the car on the side of the road, and then pitching tents in some isolated National Park somewhere.  If it had running water and plumbing of any sort, well that was just not getting away from it as far as my father was concerned.  He liked to 'rough it, translation; "here's the toilet paper, now go behind the bush", or "make sure you zip the tent up so snakes can't get in", or "showers are for wimps, as are sunglasses" or "don't worry about the crocodiles, they're freshwater so they're not interested in eating you, now go for a bloody swim".

Typical Aussie backyard.  Hills Hoist, woodpile and outhouse!
We also had indoor plumbing.  Circa 1976

But all these holidays instilled in me a lifelong love of adventure and travel.  In my late twenties, I packed up my life in a backpack and went to London for what was supposed to be year-long European working vacation.  Well that was 1999 and I never went back.  I lived in the U.K for three years, met my beloved and then moved to the U.S. for graduate school and the bright lights of New York City.  Now I'm happily settled in New Jersey (who knew???), but I still love to just get away from it all when I can.

Travel holds a special place in my heart and is something that I think my soul requires.  I've been very fortunate to have had the means and opportunity for most of my adult life, and I think I might have been a migratory bird in a past life.  Too bad that my wings have been clipped during this last year thanks to that thing I'm not going to mention in this post, but I still amuse myself with thoughts of the next great trip and memories of trips past.

My favorite countries would have to be Egypt and Italy, although I was very taken with Oman as well.  But I'm also quite interested in seeing more of the U.S. since I live here now and am practically a citizen.  I loved Maine, and Colorado holds something special for me, and I have to say I do love the Florida Keys and those conch fritters.  Still want to get to New Mexico and see Montana and Wyoming whilst I'm at it.  The Scottish Highlands and islands are up there too.

So today I'm remembering my love of travel, and the spirit of adventure and impulsiveness that I think are some of my character trademarks.  Here's a slideshow of snapshots from some of my memorable trips starting from 1999 through to 2010.

It seems the only appropriate way to finish this post is to ask a question.


Where to next? So long as it doesn't involve doctors, waiting rooms, hospitals or chemotherapy, I'm game!