The Good, The Bad & The Ugly

The Bad:
Well I'm not making it thru this 4th course of the oral chemo - more hands/feet burning so I'm off it again after 10 days. I called the clinic on day 7 and they said to go off it right away but decided to be a martyr for a few more days.... Anyway it's done for this round and we'll see what my oncologist has to say next week at my appt. Dr. Mills (that would be me!) thinks that because my tumour markers have dropped I may be able to go back on a hormone treatment for awhile however Dr. Kennecke (the real doctor) may not agree. Back in January I recall him saying that if I couldn't tolerate this drug, IV chemo may be warranted. I so don't want to do that but will adjust to whatever is next as always. I've said before how difficult it is to stay in the 'now' of my life and not worry about the next test or appt or what next month or next year will be like - this is one of those times. The fatigue is catching up with me as well - another side effect I tend to ignore. And of course fatigue = cranky!!

The Good:
So to combat this fatigue & crankiness, tomorrow I'm heading off to spend some me time with Mother Nature in Tofino (Long Beach) for a few days with my pal Deb. Pacific Sands Resort - right on the beach - perhaps some storm watching, some sun, some walks, the sound of surf and birds. I've packed more books than I can possibly read, my drawing stuff, my Ipod and some nice warm blankets so we can sit out on the patio and watch the waves. Haven't been to Long Beach since I was in my 20's. On the way we'll stop over in Port Alberni for one night to visit with Deb's brother and my very best forever friends - Cass & Gord. Good friends, good laughs, good food and without a doubt some good wine!

The Ugly:
I'm sending my hopes, my prayers and my angels to watch over my dear friend Jill who has has just been diagnosed. Cancer is shit - will it ever end? I'm convinced that it could end - if politics and money wasn't involved - if cancer wasn't such big business there would be a cure. I'm convinced that there are dedicated researchers out there who want to share their massive amounts of information with each other and that everyone has a piece of the puzzle. I believe that sharing the knowledge and facts that each of these scientists possess the world would see a cure for this devastating and often fatal disease. And then they can move on .... to so many other diseases that need attention as well.

I feel better now - thanks for reading!!

Hope, Hopeful, Faith, Optimism

Call it what you want as long as you have it. Have it in all phases of your life, have it for yourself, your family, your friends, your acquaintances your neighbors, for people you don't know, fill up on it, believe in it and live it.

I'm feeling very optimistic this week - test results show my tumour markers are down again!! Back on the chemo yesterday for another two week round and have a CT scheduled for early May that will hopefully confirm either shrinkage or stability - I'm good with either! The lack of sensitivity of some Dr's bedside manner can take you by surprise sometimes - consider this last appt. I had a stand-in Dr. do my check-up before I saw Dr. K. I felt like I was interrupting her script with my questions and that she was far too busy to see me - aren't I a patient? Isn't that what she does for a living? Anyway I did manage to get my question in re the odd dizzy spells I've been having the last couple of months - were they related to side-effects from the capecitabine? No - I don't get headaches, no - dont'get them all the time or even a lot, no - sleeping isn't a problem. Her reply - "Well dizzy spells aren't normally one of side effects that we know of so if they persist we'll do a scan to see if you have brain mets." Just like that - cold & straight. Now brain mets isn't something I've ever worried about nor has it ever been mentioned in any conversation - the cancer is in my abdomen area. Why would a Dr. say that - like that - like there was no possible other reason than brain mets for the odd dizzy spell. I've told Dr. K. that she is not on the list of Dr.'s I want to see again. And I have faith that I don't have brain mets and she was just way out of line.

My dear sister-friend also had excellent news this week - she's been fighting a long time and deserves every bit of good news she can get - you go girl!! And from what I hear Jason is still recovering well and gaining his strength back - so if you're reading Jason - keep putting one foot in front of the other!!

I attended the White Rock Nite of Hope fundraiser last night - what an extraordinary event they put together - sold out again this year. A dress-up nite for me - rare occasions now but with my lovely nieces we showed up and did our our best to add to the fundraising total!! The goal was to raise $500,000 and I'm pretty sure they went well over their goal. It's a huge event and inspiring to see how a community comes together to support the CBCF - the sponsors, the donors, the volunteers - a huge project that I'm sure takes all year to prepare for.

Part of the evening is recognition of breast cancer survivors in the audience and last night they asked the survivors to come on-stage for a tribute. I never know what to do in these situations since I don't feel like a survivor - I'm surviving - I haven't beaten this thing nor will I. What does that make me?? Thoughts to ponder.

My Mets Support Group

I was thinking that I write a lot about Callanish and how they support me and others on this rocky cancer road but don't say a lot about the 'Women With Metastatic Cancer' support group that I attend at the Cancer Agency. I wrote the article below for the Canadian Breast Cancer Network last fall (don't know if it's published or not)- it actually started out as a presentation and then I morphed it into an article. It's a bit lengthy but couldn't figure out how to attach it as a link - if anyone knows please let me know. So sit back with a cuppa and read on....

The Club You Don’t Want To Join...Reflections on living with metastatic cancer

 

 Twice a month on Wednesday mornings, I make my way to a small but cozy room on the 5^th floor of the BC Cancer Agency to connect with a community of women like myself who form The Women’s Metastatic Cancer Support Group – a group we affectionately refer to ‘the club you don’t want to join’.

 

I’ve been a member of this ‘club’ for 4 ½ years now, along with others who have been members longer and others who were members for shorter periods of time.  We are young, we are middle-aged and we are older, we are married and single, some of us have young children, teenagers, adult children or grandchildren and some no children at all.  Sometimes we are well, sometimes sick, sometimes in treatment and sometimes not.  But all of us live in a world where cancer is a chronic disease, which is another way of saying we live in the shadow of dying.

 

My first encounter with cancer was May 1992.  A diagnosis of breast cancer led to a course of treatment including a lumpectomy, node dissection, chemo, radiation and tamoxifen.  I patiently waited for the requisite 5-year mark to pass and then emotionally promoted myself from ‘cancer victim’ to ‘cancer survivor’.  How wrong I was.  Thirteen (13) years later, almost to the day, I was diagnosed with metastatic breast cancer to my liver and diaphragm with no option for surgical intervention.  I was totally confused – nothing hurt, I’d been ‘rubber-stamped’ – I was a survivor, I didn’t look sick, I’d been cancer free for 13 years - what the hell were they talking about.

 

When I was re-diagnosed in 2005 my life turned upside down.  AGAIN I had to tell my family… but this time I also had to tell them it was terminal… or incurable which is a softer term many prefer to use – it doesn’t really matter – they mean the same thing.

 

On re-diagnosis I pressed my oncologist for a time frame – everything seemed so imminent – how fast did I have to do the living I wanted to do.  He told me 2-5 years while cautioning me about statistical averages.  Since then I’ve learned statistics are just that and, in my opinion are of no real value  – I’m doing much, much better than anybody expected and think if I’d paid too much attention to my ‘best before’ date my quality of life would not be near what it is.  Doctors simply don’t know how each individual will respond to treatment and without a doubt giving an ‘expiry date’ is not in any anyone’s best interest.  Since my re-diagnosis I’ve met many individuals who have outlived their statistical time frame – some by as much as 10 years.  More and more people will continue to live longer with all the new treatments, drugs and trials being developed – a group of people who don’t fall into the conventional categories of either active illness or survivorship.

 

Living with cancer is a unique world - an ongoing dance between emotional challenges and physical limitations.  Never a day goes by that I’m oblivious to the fact I have cancer – right from the moment I open my eyes in the morning, although I have to say some days it doesn’t occur to me for an hour or so and that I consider that a good day.  It goes way beyond tests and treatments, medications and medical appointments, support groups and statistics.  It’s in my head as much as in my body – perhaps even more so.    It’s a life occupied alternately with fear, confusion, anger, anxiety, sadness, side effects and fatigue but it’s also filled with joy and laughter and fun, happiness, family and friends and love.

 

The first eighteen months after re-diagnosis I struggled – not so much physically – getting used to meds and side effects was way easier than getting used to the fact I was going to die from cancer.  I put on my best game face for everyone in my world, I tried to protect them, I let them ignore the reality of my life, I didn’t show my grief, I didn’t worry them with details.  I didn’t talk to them on my bad days because we no longer spoke the same language.  I felt a huge responsibility to make things easier for everyone – to lessen the grief and the heartache.

 

But, as life always does, things settled down.  The fear of treatment and the prospect of death didn’t seem quite so imminent and so my life returned to this new “normal”.  This time of trying to live in the present and not in the future, to not worry about the next set of tests or to think about how my life will be in one year or two years or five years.  To keep putting one foot in front of the other and to be grateful for the time I have and use it wisely.

 

Mind you, the brain doesn’t always cooperate – fears crop up, questions surface, anger appears and confidence wanes.  Are the meds still working?  Why is my stomach so upset – has it moved to my abdomen?  Tests again – please let everything be stable.  I hate having cancer.  Is this the start of the end?  Do I really want to know?  Can I handle the pain that will come my way?  Questions that have no answers right now.

 

And while all this is going thru my head, I’m busy doing the day-to-day things of life – I clean, I cook, I hang out with family & friends, I go to support groups, I go for walks, I shop, I laugh, I talk about insignificant and trivial matters and watch TV.  On the surface my life appears in hand - if I look fine and do what I do then I must be healthy and the cancer must be in control.  But controlling my cancer isn’t the only issue – how do I get control of my life?  I live in two separate worlds – the cancer world and the non-cancer world.

 

To be able to sit in a room with other women who ‘get it’ is a lifeline during the really tough times as well as the okay times.  The Women’s Metastatic Cancer Support Group I attend is a resilient group of women, a diverse group who love to laugh, shop, eat, drink wine, travel, play with our children, walk our dogs, write poetry, go to the theatre – a sisterhood of individuals whose paths, under ordinary circumstances, would likely never have crossed.

 

But together we are a force to be reckoned with!!  We share a wealth of information in the art of living with cancer as an extreme sport.  We share our frustrations and anger along with our good news and our bad.  We compare notes on medications, doctors, managing side effects, upcoming trials and how best to manage our way through an often de-sensitized medical system.  We encourage each other when we’re feeling anxious or dismissed, sad or confused, sick or scared or when we’re just down in the dumps.   We speak the same language.

 

Our conversations cover a myriad of subjects, one being the frustration we feel with individuals – including those in the medical field - who just don’t get it.  We know people don’t intend to be thoughtless or insensitive however there are just some questions and/or comments that bewilder us:

 

BUT YOU LOOK SO GOOD!

Ø       There’s a common perception that people who have cancer look like they have cancer.   Please be aware that looking good has nothing to do with it – you should see me on a bad day.

 

THE ‘HOW ARE YOU DOING?’ LOOK.

Ø       It’s the frown in the middle of the forehead, the squinty eyes and the head tilted just ever so slightly look.  Rarely do we find someone who really wants to know.  Most people don’t want to talk about ‘IT’ – about cancer and death and dying – but it’s part of every metastatic patients world so be very, very careful if you’re going to ask with that kind of look on your face.  And by the way, sometimes we’re just fine.

 

WELL – WE COULD ALL GET HIT BY A BUS TOMORROW             

Ø       Please don’t patronize me – I’ve already been hit by my bus and I pray you won’t ever get hit by this one. Don’t minimize my situation.

 

OH COME ON, YOU CAN DO IT!

Ø       If I felt that I could I would.  Sometimes the emotional toll of cancer incapacitates me as well as the physical – please understand it has nothing to do with you.

 

DON'T TALK LIKE THAT. YOU’LL BE FINE.

Ø       There’s every likelihood that I won’t be fine – I’m in a very real situation.  If I want or need to talk about what life will be like when my cancer progresses or after I die, DO NOT under any circumstances give me that fake, terrified, cheerful smile.   Just tell me you’re not comfortable with the conversation – I understand.

 

WHEN YOU ASK ME HOW I’M DOING include my whole world.

Ø       Please remember that I am much more than my disease. Remember that we really did have things we used to talk about BEFORE cancer. Those things are still important to me.

 

PLEASE DON'T EDIT ME.

Ø       Yes I have a lot on my plate. But it’s not your job to withhold bad news from me. I’m an adult and I don't want to be left out of the loop. Don’t avoid subjects that you think might be too sensitive for me – let me make that decision – I need to know what’s going on – good, bad or indifferent my mind remains intact.  I don’t need to be protected from life.

 

We talk about our losses - metastatic cancer diminishes women in many, many ways that others can’t comprehend.  Certainly some of the losses are visible – our hair, our breasts, our beautiful skin, our basic body functions or our energy.  But the losses go much deeper than that – unseen losses at the very core of who we are.

 

Ø       We lose confidence in our bodies

Ø       We lose our independence

Ø       We lose our jobs

Ø       We often lose our individual identities – from motherhood to business executive

Ø       We lose feelings of sexuality and femininity

Ø       Young women lose their fertility

Ø       We lose our self-esteem

Ø       We often lose our financial independence or security

Ø       For some it is a loss of faith or a questioning of religious values

Ø       We lose relationships or the hope of having one again or the energy to pursue one

Ø       We can temporarily or permanently lose our memory

Ø       We lose parts of our bodies that can’t be seen

 

We wonder who the woman in the mirror is.  We know who we used to be but now we have to re-invent ourselves to live a life we never expected.  We lose the ability to live life without fear.  We know we will never be able to move past cancer so we have to work out how to live with it knowing that our lives can change in one short doctor’s appointment.

 

Our hearts break every day – for ourselves, our families, our friends and for each other.  We listen to each other’s fears, hopes and dreams and sometimes we have to grieve the loss of our friends – and we do this together as well.

 

My group is not just about cancer – it’s about our lives.  We’re not a therapy group – we’re a support group.  We talk about the possible and the unthinkable.  We come together to talk about our worlds without having to censor our thoughts or our tears, without having to sugar coat what we are thinking or feeling and we know that in our space we are understood and safe.  We find great comfort in being together with no pressure to be anything other than just how and who you are.

 

I pay tribute to and hold tender everyone one that has ever walked through our door and has had to join this ‘club’ you should never have to join.  I am forever grateful for all your thoughts, your courage, your generosity and compassion and your wisdom  – without all of you I’d have much less insight and resolve as I travel my path.

 

Round 3 Complete..

Well another round completed and I'm in pretty good shape. Another day or two would clearly have brought on the blistering again based on how my hands and feet are feeling and I'm definitly feeling the fatigue now - or is it just laziness?? - hard to tell!! Oncology appt next Wed and am waiting with bated breath for good news - that's 3 rounds now and am feeling optimistic. 'They' say its a week off but actually its a week of anxiety - now that I've writen that it seems like a silly statement - every week living with cancer is a week of anxiety.

I want to send a great big virtual hug and congratulations to my pal Colleen - she has just had her 150th treatment - yes 150 treatments over 10 years and remains clear and healthy! The grind of doing treatment like this for 10 years is heroic in my opinion. And people forget, assume you are well but imagine how much emotional energy is required to drive to the clinic every 3 weeks for 10 years, how much energy it takes to stay positive and how taxing it is on one's body to absorb so many chemicals. It wears you down - physically and emotionally. And in the meantime life happens - so Colleen you are my hero and I love you to bits and I'm with you every step of the way.

I missed a lot of Callanish events over the last couple of months but was finally able to get back to the writing workshop this last couple of weeks. We are an amazing group of people and Kirsten and Janie are such inspiring facilitators. I love the notion of writing into a prompt with a view to exploring the inner landscape of your life - it's amazing what comes out - or not!! But writing is good for the soul - as is any creative exercise I've discovered over the past few years. I'm currently waffling over whether or not to attend "The Painting Experience" workshop being held on Whidbey Island April 22-25. 3 1/2 days. "The goal is free expression, where the journey itself is the goal, not the technique." Which is a good thing because I have no technique!! I was hoping to attend with a friend but doesn't sound like that is going to work out so am contemplating going on my own. Pretty scary. But as I often ask myself what is the worst that can happen?? I could really really enjoy it OR it could be very uncomfortable and intense and so I can leave. But 3 1/2 days away from my sanctuary without my own pillow...... that's a stretch for me!

My heart is breaking for a family friend - Jason - who has recently been diagnosed and had a huge surgery last week. Another individual who is way too young to be in this club you don't want to join. I've had some updates tho and appears he is rallying back from his surgery really well - in fact as his wife says ' remove a couple of tubes and he thinks he's an athlete'. Well you gotta have attitude to battle with cancer so here's to you Jason - fight the good fight!!

Lots of little things going on in my life. Family, friends, renovations!! I will be so glad when this strata reno is done - people are unbelievable - now we have someone in the building vandalizing some of the work that's been done - what a coward - if you have something to say say it and don't hide. All things considered, the contractors are doing a terrific job and the common areas are starting to look fabulous - so people - a little vision and a little patience please!

Off to the couch for a nap - Happy Easter to all.

Rest easy Peter