The past few days have been very reflective. I’m so grateful to be cancer-free right now, (even if I’m not pain-free yet! Argh.) On December 6th, just two days after signing on with Canada House Gallery, I had a second mastectomy and all pathology reports came back clear.
Compared to this time last year, I feel much less panic and despair. It’s kind of sad to look back at what we all went through and yet there is a certain sense of triumph in this reflection today. I have met new friends, seen old ones fall by the wayside, created new works, cried, laughed, thrown away lots of uglies, found beautiful new things in life, learned how to throw on a wheel, and I’ve learned how to receive and trust, to wait and to balance. All of those are in many ways, just a string of decisions.
While I know it’s a stretch to talk about illness as a gift when it exists also as a trauma to family and self, looking at the good things in our lives is what has brought us through.
I’m so grateful to my adopted Blackfoot family and community, the Elders, the traditional medicines, prayers are paramount in my wellness. The Big Smoke at The Banff Centre was beyond words for all of our family. I feel more a part of this community, learning new things every day, than I ever have before and I cannot ever thank you all enough for your ongoing welcoming of our family. Grandpa Tom has been with us from the first day of diagnosis, and Auntie Charlene CraneBear and Leah Bear Chief’s inspirational, positive postings each and every day on Facebook were things that lifted me when I was alone and quiet.
I’m thankful for the beautiful family I have – my brothers and sisters-in-law, Kim, Ulla, David and Douglas. I’m so proud of the work they do in this world and that every week, I get a call from Doug, no matter where he is in the world and what he’s doing to help others on this planet. Without my brother David’s help in the last residency at The Banff Centre, I wouldn’t have been able to express myself in paint in such magnitude…and that kept my spirits lifted in a year without painting.
My mom and dad just happened to fly into town on the day that I had the mammogram that diagnosed the disaster for our year ahead. It was a sorrowful, difficult Christmas last year, but they have been there to support us from day one, even when my Dad had a heart attack in the spring. We simply could not make it without you.
I’m proud of my children and my husband who have nursed me through everything. It’s not been an easy year, and they have seen the ugliest side of it all, without complaining – they just kept helping and assuring me that I would get well, even when I didn’t believe it. Thank you Benjamin, Kevin, Jacob and Grace.
Kevin especially – you’ve held us all together like a rock this past year. You’re exhausted, I know it… I hope this year if full of rest, rejuvenation and sleep after this wicked marathon.
2014, I hope will be my “Year of Gentle Making”. I have a few things planned, but not set in stone to reflect artfully upon my experience. With a few more prayers, rest and recovery I hope soon to be back in the studio in a meaningful way. My wish is for everyone to take some time for themselves, to be in good health, keeping your mind and heart open and to have as much time with your family and friends as you possibly can. Everything else can wait.
Last Wednesday evening Kevin and I were awake most of the night, listening to the unusual downpour of water – steady, fast and torrential. The only time I’d seen rain like that before was in Haida Gwaii last year – in a coastal rainforest, certainly never in the dry frontranges of the Alberta rockies.
Normally, we are very early risers. The dark dawn of June 20th that marked Kevin’s 39th birthday was no different as he headed into work in Calgary at 4:30 am. I received a text from him not long after he’d left, letting me know that the rain was so bad, there were blockages on the highway just east of us near Deadman’s Flats and gravel was washing over the highway. He wondered if he should turn back home. I turned to social media and this is what I found from a friend living across the valley:
I quickly let Kevin know and asked him to turn back. Looking further, I saw that there were just a few more postings but no other significant media coverage. Checking Twitter, CRPS Bus Service confirmed school was closed and a State of Emergency had been declared. Oh boy.
Ben was awake, and he and I decided to go out in the early morning dawn to see just what was going on in our immediate neighbourhood. We took some video and were amazed at what was happening around us. There were very few cars out that early, and we saw no emergency or infrastructure vehicles. It was deadly quiet, except for the sounds of the rain and the river.
Here’s a cobbled-together video of the footage Ben and I took around town on the morning of June 20th, between 5:30 and 7:00 am.
When Ben and I were out filming, Kevin called to let us know that the Trans Canada was closed and that he was trapped on the other side of the mountains, at the Stoney Nakoda Casino exit.
Thursday morning was my “chemo prep day”. I was scheduled to have my final 6th chemo delivered on Friday, June 21st. As such, the normal procedure is to have bloodwork done the day prior to chemo delivery to ensure blood counts are at a level that will be safe. Normal procedure calls for the chemo drugs are then mixed once bloodwork has cleared at the local hospital and we’re off and running for the following morning. There are also a few drugs that are given ahead of time (potent steroids) to ensure that your body doesn’t react too terribly. For me, the steroids themselves are awful.
Prior to setting off to the hospital around 9:00, I called to ask if they were operational and it was okay to come in and get the bloodwork done…the answer then was yes. I stopped and filled up with gas, and went into Sobey’s to pick up my pre and post-chemo medications, including the $2800 Neulasta shot that I would need the day following chemo. While I was there, the power went out in Sobeys. Our amazing pharmacist Scott filled my prescriptions and told me not to worry – come back later and settle up. What a guy! Most people wandering around there had no idea what was going on in town. I’m glad I’m an early riser.
Heading over to the hospital, it seemed like business as usual. There was a small amount of flooding in the parking lot but nothing major and a pump hose was running from the hospital. I got my bloodwork completed, and was told I’d hear as normal around noon if we were a “go” for chemo on Friday – at this point, the “go” was all on me – i.e. Were my blood levels and white counts all safe? Shortly around noon, I received the all clear and was told to come in as usual between 9-9:30 for my chemo on Friday morning. I admit having doubts that hospital staff seemed as aware of the situation.
As the day wore on, we could see that things were getting worse. People were losing their homes on the other side of the river, and checking in with each other via phone and social media. I was worried about chemo on Friday, and thinking about Kevin being stuck and our family being separated – all the usual logistics of how we handle these days, and what contingency plans we needed to make, given the flooding circumstances. He tried every way he could to get a way through, but the 1A was also closed and washed out. Finally, he quickly grabbed a room at the Stoney/Nakoda casino and dug in for the day.
The rain continued to pour and I and others spent a lot of time on Facebook and Twitter getting updates, passing along information and sharing evacuation information with friends here in Canmore. I’m so grateful for everyone who kept looking in on us and checking to see that we were okay. So many people volunteered to drive me to chemo for Friday and ensure that I got there. Someone even volunteered to get me a helicopter if Three Sisters Parkway closed. There were helicopters flying everywhere and rumour has it that some of them were flying illegally, taking tourists from spots around town in Canmore out of the flood zone for exhorbitant amounts of money. In my heart, I couldn’t believe that I was thinking that I was WISHING for this poison to be delivered to me. It’s been such a difficult journey and so hard on my body, I’d rather forget about the whole thing like a bad dream.
Photos and reports of terrible flooding in High River started flowing in – another satellite area where chemo is delivered for area residents. Friends posted videos and photos of the other side of the valley in Canmore by Cougar Creek where people were losing houses, and we all felt so terrible. Footage that friend Wade Cameron shot from his backyard at Cougar Creek:
The dexamethasone steroids kicked in with ferocious tenacity by 1 pm on Thursday and I was wired right through until 3 am on Friday. The only good thing about this was that I could watch news, disseminate news and alerts faster than normal. The kids were all a little nervous and Grace especially was stressed and worried for her Dad. My kids were rocks.
Friday morning dawned and Kevin called me to say he could see from his hotel room window that some cars and vehicles were being let through on the Trans Canada Highway, so he was going to go and see if they would allow him to come through and get here as primary caregiver for me during chemo. Lucky us…he was let through and carefully made his way along the broken and battered TCH. Here’s some of what he saw early Friday morning:
Washed out Trans Canada Highway, east of Canmore, Alberta due to flooding
I received a call from the Canmore hospital at 8:30 saying that they would not be delivering my chemo because the basement of the hospital had flooded and the drugs did not get mixed because a special hood under which they are mixed was damaged. I called my oncologist’s nurse at the Tom Baker, concerned and wanting to be able to assess what this would mean for me if there was a delay in my chemotherapy and to see if I could rearrange it. I was told that a couple of days would be okay, but that longer than that, it would lower the efficacy and therefore my carefully calculated “chances” of survival. I was feeling a bit of dread around this. A bit? That’s an understatement.
After the mastectomy and 5 gruelling rounds of chemo, this was my last one…the big BANG. I’d be warned earlier in the week that this round would be harder on me than the previous rounds, and had done everything I needed to in order to prepare my body and mind for the onslaught and brutal side effects. Everything from internal type chemical burns on my hand to severe and extreme bone, muscle and joint pain, fever…I’ve experienced the bad side of Docetaxel. I’ve even had thoughts of not having my last chemo, but want to take the best shot I can at life! Who wouldn’t?
Just one side effect of chemo – internal “chemical” burns to my hands.
Kevin arrived home and I was ever so happy to see him. The phone rang again and it was the Canmore hospital calling back…they could INDEED deliver my chemo so please come on down. We grabbed our rubber boots and rain jackets and just as we were driving away, the Canmore hospital called us again to say that they now could NOT deliver it. What a horrible see-saw. I asked to speak to someone in charge and was handed over to an administrator at the Canmore hospital. I asked why now it could not be delivered and she could not provide a logical answer to me. The doctor, nurse…everything was there and apparently the pharmacist was given permission to mix up the drugs in a different area of the hospital. The administrator lost her patience with me and hung up on the phone. (I admit…I’m like a dog with a bone when I’m looking for answers and being hung up on is something I’ve become accustomed to. I get it and am not offended.) We kept driving to the hospital, thinking that a face to face investigation at this point was in order so that we could assess for ourselves and receive an adequate explanation for this yo-yo ride. I was not ready to take “no” for an answer….but I did need some sort of logical answer and believe that I, as well as any patient facing this kind of circumstance, should deserve. Just some respect.
We were able to get into the hospital – no problem at all, although there was quite a bit of water on the roads surrounding it. When we arrived, it was very quiet. I asked the two reception staff if there was an additional state of emergency in place that would cause any non-delivery and they indicated that no…things were very quiet and they had not been notified of anything. Kevin and I proceeded to the cancer care clinic area and found our chemo nurse there. I announced that I was here for my chemo and she told me that she was not allowed to deliver the service. I was not surprised at this answer, and asked who I needed to speak with for further clarification as to why. I was pointed in the direction of the hospital administrator’s office.
Me…June 25th, 2013
The administrator ushered us into the boardroom and I asked her why it was that things had changed so quickly and why chemo could not be delivered, since we were aware that a) the chemo nurse was present b) the doctor was available c) we had information that the drug could be safely mixed on site. Despite all manner of questions, she was unable to give us a logical answer. She told us that maybe our nurse was needed to help prepare lunches for the current 60 residents. Really? Wow…this is a reason chemo can’t be delivered? Kevin and I both offered to help do that or get volunteers to help if they were short-staffed. She was just not making sense to us at all. She told us there were 60 patients currently there, with 100 staff. That’s a pretty high ratio, I’d say. After a bit, she admitted that she needed to take a break so we waited for her to return…..tick….tock…..tick…..tock……
She returned with our chemo nurse and another staff member. We again asked the same questions, but were not given a logical answer. We offered to try and contact other higher officials and were told that they were in fact “flying over top of us right now”. The other staff member, who was not introduced then told us, “We know things we can’t tell you.”
Right. That’s the best way to trigger my Oliver Stone reflex, chicklet.
I told her that in fact, the situation was one that was affecting my treatment, life expectancy, etc….and likely that of others, so if there was something that they needed to tell us…they needed to tell us. They would not, however be forthcoming with us, and we left the meeting.
I like things that make sense. Give me the reason why something can’t happen, and I’m the first one to accept it and try to find a solution to the problem. Tell me that there’s something that you can’t tell me….I’m on that like a dog. It’s disrespectful and that hits hard on my own core values.
I let go of it for a day…trying to figure out what exactly was going on at the hospital, but didn’t see any high alerts, evacuations or anything. I did see a need for help in my neighbouring communities of Morley and Siksika so spent a day trying to get media to pay attention to the flooding and homeless in both of those communities. Buy the end of Saturday, I’d Facebooked, Twittered and social-mediaed myself into exhaustion. Ever grateful that Dea Fischer and the crew at the Canmore Legion picked up the ball when my energy went south and organized supplies to be delivered the following day.
Sunday morning found us taking 18 truckloads of goods out to Morley. Yeah! It felt good to be occupied and help out, and thank goodness the steroids were still keeping me pumped up. Community successes buoy me onwards…how about you?
Food Hampers packed for delivery to the Stoney/Nakoda community at Morley
Volunteers hard at work at the Canmore Legion, sorting and packing donated goods for redistribution to those in need.
18 Truckloads of supplies, water, clothing, food and staples delivered to Morley by Canmore volunteers
Allison Poucette and Erica Ryder, strong women community leaders and volunteers from the Stoney/Nakoda Nation
I was privileged to have spent almost six years as the Program Manager for Indigenous Leadership at The Banff Centre. During that time, I met many leaders and community members from First Nations, Metis and Inuit communities from across Canada. What has always inspired me is the resilience, sense of humour, determination, resourcefulness and exuberance when faced with adversity. This time around, I see incredible teamwork and leadership in my neighbouring First Nations communities of Morley and Siksika. My heart goes out to all of you, as I know first-hand that your challenges are greater than those off-reserve in regular times, never mind times of crisis and devastation.
A friend sent this to remind me to care for myself so that I could care for others.
By the end of day, I was exhausted and collapsed into bed…thoughts turned again to myself and my family and I began thinking again about my cancer treatment and what impact this was going to have personally, on my own life and mortality.
Monday dawned after a restless night, and again I began contemplating my own particular situation. The longer I thought about it, the more concerned I became, thinking about the devastation to infrastructure all across the southern part of the province and concerned about how officials would be prioritizing services. It’s scary to see railways being fixed immediately, and declarations of “Stampede Will Happen Come Hell or High Water” when you can’t get the medicines to get you better. Hmmm….something amiss with this triage, methinks.
I called into the Canmore hospital to see if they had anything planned or scheduled and was told that no…not yet…but they would get back to me. I was told that it would be two weeks before the hood to mix the chemicals would be fixed. I admit crawling back into bed and having a little cry, trying to absorb what this meant to our family. By the afternoon, I picked myself up again I got on social media and began tweeting about questions for cancer and chemo delivery. The story started to get picked up by others and people began to ask questions. I was happy to hear this. I’m very thankful to Kim Castleberry and Paul Thompson as well as CTV, Global, CBC and the Calgary Herald for responding quickly and asking questions about my particular circumstance and story. They in turn, retweeted to the Minister of Health and other authorities. By sharing our stories, we can get to the bottom and ultimately find the common points we are all concerned with…and fix the darned mess – if not for this time, then the next. There was a rather ugly “troll” telling me to drive to Edmonton and get off Twitter…to quit complaining….yikes…pffft. Boy, people can get ugly.
A few hours later, I got a call from a lady at Alberta Health Services that they would arrange to have my chemo mixed at the Tom Baker in Calgary and delivered to Canmore by courier mid-morning Wednesday so that I could receive my treatment. Wow. GREAT! She rushed off the line at 4:30 to ensure the orders for the drugs were received by the pharmacy. Phew.
Then I got thinking…what about all the OTHER patients? Who was going to do the same for them? What was going on in High River for the cancer centre patients there? What was happening for those at Holy Cross in Calgary which was closed down. At this time, I still don’t have those answers and I don’t know for sure if everyone else in Canmore who should be getting their doses tomorrow…will get their treatments.
For the future, this is something that we really have to consider. With the Tom Baker Cancer centre at or over capacity under normal circumstances, it concerns me that in times of disaster and stress, that there are potentially more lives being put at stake than need be.
Here are a few suggestions to the province and Alberta Health Services to avoid this in the future:
Put adequate back-up plans in place to ensure no cancer patient’s treatment is delayed. Zero tolerance.
Empower hospital administration to adequately address emergency circumstances with patients in a timely and organized manner. “I can’t tell you the secret that I know.” does not help or instill confidence in the system.
Deliver leadership and crisis training to address these concerns.
Improve communications regarding health care in emergency situations.
If chemical transport isn’t possible due to hazardous material restrictions, a plan for how patients can get added to treatment rosters in Calgary or the nearest delivery site to their location.
That’s all I can write at this time on this subject. I’m bushed and the media has been calling (thank you for getting the story). The steroids are now racing through my veins, making me a little odd-headed so I daren’t write more at this time. I will update on this post as I find out more information and I hope that in sharing my story thus far will help someone else. Thank you to all those who have helped get things in place and keep working hard to ensure this won’t happen again.
“Stampede can wait….a cancer patient cannot weather hell and high water.”
UPDATE: June 27, 2013 – Chemo Delivered to Me on June 26th, 2013
At 9:00 am yesterday, I received a call from my chemo nurse at the Canmore Hospital. She said that they anticipated the Docetaxel to be delivered around noon, so to please come in around 10:30 – 11:00 to start the additional pre-chemo meds. They deliver a hefty IV steroid and Benadryl to counter-act the toxicity and allergic affects of this highly toxic drug. I hadn’t slept much the night before because of the oral pre-steroids, and was feeling a bit shakey. Kevin missed yet another day of work to take me. That’s a total of five days of missed work because of the flood and delays in chemo, which is hard on our family financially. My daughter Grace has been affected by the events of the last few days and has been sticking very close to me. She wanted to come and be with me for this last round. I admit I wanted her there too – she, the boys and Kevin is why I’m doing all of this. I have to admit I’d be happy to face my time, if that’s what the Creator has set for my path.
My chemo nurse Isabelle has been with me through all of this, and I have to admire her care of our family, her professionalism and willingness to do anything and everything she can to ensure my best health. I was very happy to see her after the stressful incidents over the weekend. We got all set up – she worries about finding a vein for me. I have only one arm that can be used, as the mastectomy surgery took place on my right side – the arm that I use to paint, which…sadly, I still can’t get quite working properly yet. I have high hopes that will all settle in time for me, and I can begin to get some of my thoughts out artistically on what this journey has meant to me.
On a side-not for continuing mess-ups in Canmore, the doctor who was supposed to be in attendance at the clinic yesterday did not show up. I was told that he had a meeting in Edmonton in the morning, and then took the Jasper Parkway to get through to Canmore. Um….the road between Banff and Canmore was closed to only the Roam bus traffic at the time, so I have NO idea where this guy’s head is at – certainly not focussed on my care…and I’m glad that he wasn’t there…although protocol says he must be present in the clinic when this drug is being administered. What a foolish man. This is the same guy who I talked to three rounds ago to express how bad the side effects were on my hands and arms, and that I wasn’t able to paint. He had the audacity to say…well, can you paint with your left hand? Really dude?…both arms are affected. Grow a pair of ears that work.
A decision was made to allow my chemo to go because there was a doctor present in emergency, and two nurses were available. Whew….but according to hospital admin on Friday….that was a MUST…and that was all in place then. See? These are the inconsistencies in protocol and procedures that must be addressed in order to keep us all safe. I take some weird comfort in the fact that CBC was busy texting me during all this trying to know for sure if it was going…or not.
Soaking my hands in ice water in hopes of relieving neuropathy and internal chemical burns caused to my hands. We never know if this will work, but we try…and yes, it hurts a lot!
I did not see any other chemo patients in the clinic in Canmore yesterday, and I am hoping that everyone who needs this service is getting it in a very timely manner. This report below from Global states that all the other patients have been moved to Calgary and Lethbridge for their chemo treatments. This worries me, and I will try to continue to follow up with my recommendations for patient advocacy as the months in front unfold. We can all do better in the delivery of our care, and we cannot just leave it to Alberta Health Services, the doctors and nurses to advocate on our behalf. They’re busy trying to deliver the services. We must be pro-active and solution-oriented as private citizens and I believe, continue to partner with private funding sources and government to ensure the funding flows into the areas that it is required, and not haphazardly applied.
System designs, adequate contingency planning, training and support for leaders in crisis management should be a paramount priority. So, while we’re all busy in the honeymoon phase slapping everyone on the backs for the volunteerism and close calls….it’s also very important to highlight gap difficulties and ensure that they are addressed both at the systemic and human level. We never know if the next stormcloud is just on the horizon, and Alberta could not handle a repeat of this event in the next month. June (flood month)…still isn’t over.
I have to say how pleased I am that the media picked up this story and dug hard to find out the facts about those affected by the closures and the flood. All major networks connected with me to ask the right questions, and I appreciate their willingness in a time of a million critical stories, to filter through and tell this one. I don’t feel this story is about me. It’s about all the cancer patients in Alberta who are doing their best to fight this terrible disease and even worse curative path to health. I’m thankful to Global and Heather Yourex for airing a good segment and hearing Dr. Craighead state that the Tom Baker Clinic has been over-capacity for ten years is a powerful fact. Apologies for the shaky vid…using what tech we have at the moment.
I am less pleased, but not surprised by the spin-doctored press release from Alberta Health Services of July 25th, 2013 stating how wonderfully Canmore Hospital performed during the flooding. In my opinion and from our personal experience there are incorrect statements in here stated by hospital administrator Barb Shellian which I hope she will find the courage to correct. I stand by my recommendations listed above and pledge to keep doing as much as I can through my own health challenges to ensure Albertan cancer patients receive the best and most timely care that is possible.
As things stand for me personally now, this delay has untold, unstudied effects on the efficacy of my treatment and I will forever have the question in my mind that if…just if they had delivered on time, it would make a difference to me in the long run. My radiation now is pushed out to the end of July, and our family will be dealing not only with those treatment travels back and forth to Calgary, but another 6 week recovery after the radiation treatments into September. If things had gone as planned, we may have been able to make some important trips to Haida Gwaii to see the first pole raised in 130 years in the Gwaii Haanas Park area, but that will now have to wait. As such, plans for my second mastectomy will be longer now, not even considering in some other issues they’ve found along the way. For now, we will continue to go day by day. Today, I will receive my painful Neulasta shot this afternoon which will lay me out for a couple of weeks. Thank you all again for your help and support.
I am forever grateful for your willingness to engage in being beautiful Full Time Human Beings, warts and all.
My challenging little red pear models, all set up and ready to shine.
I’ve been struggling with chemo for the past month and a half. It hasn’t been a picnic. I fight, it fights back. I zig….it zags. Like some crazy knuckleball pitcher, neither he, the catcher or the batter know where that ball is going to end up.
The painful underpainting. Trust me…it was painful in so many ways just to get this down.
I think I’ve been pretty patient, trying to get my body to heal and “take it”. Everyone keeps saying, “Stay positive…stay positive.” Hell, staying positive is for crazy people. As a human being, it would be wrong to stay positive ALL the time. That’s just not balanced, is it? Having a good cry sort of cleans it all out. (There’s been a lot of ‘cleaning’ around this house, that’s for sure.)
All of this shit (literally) has kept me from painting, and that’s frustrating. Either I’m throwing up (from one end or the other), sleeping, at tests and doc appointments or trying to heal through some excellent massage therapists and collaborative medicine gurus (love them).
ENOUGH IS ENOUGH!
My little setup by the fire.
Today, I just wanted one normal day…to cook my family some dinner and actually be able to stay up and watch them eat it…and paint. Something…..freakin’ ANYTHING for that matter.
Most of the day, I spent making a delicious roasted organic, free-range (read ‘break-the-bank-expensive’) chicken with all the fixin’s. And all that time in the kitchen, I was totally distracted by the sunlight in my front window backlighting some organic red pears. Their shape….the colour…the light….all just finally BROKE me. So I ditched the nap this afternoon and painted! YAH HOOEY!
Now wait a minute. It wasn’t that easy. It was emotional, and painful. Three little pears beating me down, the light – challenging me to a dual and the paint, driving me crazy with it’s juicy colour. My arm just isn’t what it was, and tons of physio and exercise are helping, but it can’t get there fast enough for me. What I learned is that sometimes, you just push through the pain and the goop, and enjoy it. This wasn’t a “let’s paint a fantastic painting that will live for all time” event. This was….”let’s see if I CAN paint, and just get something done.”
Scumble…midpoint through the painful experience. This is sort of where it all falls apart, or you push on through. I pushed…and I also fell apart.
Well, I’d say it was a success. There’s a painting, anyhow. And a hearty chicken dinner will hit the table in a few minutes after I hit the Tramadol. (Oh…and a blogpost!)
Screw you, chemo. Three organic pears beat your poisonous butt.
When the reality of life is too much, as human beings we have our imagination, our made-up, make-believe worlds to help us navigate the unimaginable. For artists and creatives, I can only think that we are somehow super-charged with imaginations – for the best, and for the worst. This week, I found out I’m facing 18 weeks of chemotherapy. That’s scarier than any Stephen King novel yet. What frightens me most is not the random invading cancer cells that MIGHT be in my body, but the side effects of the poison that the wicked witch is about to unleash. I will not recount the details so that you, dear reader, might be spared the nightmares that have plagued us all week. Far worse than the flying monkeys of Baum’s imagination, things like neuropathy are unimaginable for me. How can I think of the possible nerve damage to extremities – hands, feet, well-trained artist’s fingers and hands. @#$%
I’ve been searching for one good reason – just one good thing about chemotherapy to get me through this, and it was through an idea that Grace The Good Witch had this week, and a fancy red pair of running shoes I spotted yesterday.
Grace said to me, “Mommy, I know what we can do – let’s just pretend that you have a fever for a long time.”
Brilliant. I can go with that. “It’s just a fever.”….but the “let’s just pretend” is even better. Why didn’t I think of that? Let’s just pretend…and this nightmare too shall pass.
Only the fear or more horrible side effects can get me into the dentist’s chair, and there I was yesterday. Tense….I imagined being on North Beach in Haida Gwaii while the scraping and scratching went on. After awhile, it turned into the sounds of crashing waves, seabirds and the wind whispering in the seagrass behind me. Ta da….done.
Feeling like maybe this whole, “Calgon, Take Me Away” approach might be actually working, I stopped in at my friend’s shoe store. A pair of red leather running shoes just jumped off the shelf, onto my feet and remained there. Oh dear….I really am leaving Kansas on a cyclone.
My Magic Wand
Yesterday was sad for me. I had an exhibition of some paintings opening at the Kaay Centre, Haida Museum in Haida Gwaii and I so wanted to be there with my friends and fellow artists. Wicked Witch Tests kept me from them. However, once the ruby slippers were on my feet, it seemed that suddenly I was with everyone if I just clicked my heels together. Following the yellowbrick road, I went into the Kitchen Store….and there on the shelf, a red wand in the form of a compact kitchen latte frother jumped RIGHT into my hand. AHA!….this shall be useful to create those magic concoctions to keep me healthy and protect me as I venture into the Witches’ Castle! My friend Birgit, the Good Witch of Kitchen Store also found a special concoctor guaranteed to make me smile as I brew the herbs and tinctures to battle the evil chemo sickies. (stay with me…..)
A little further along the yellow brick road, I happened upon Josey, The Benevolent Witch of Bookery and there I found what I was looking for – food for the mind, the Great Oz Ernest Hemingway bookery themselves to carry spells of imagination of the great seas and wars.
That night, as my good friends gathered in Haida Gwaii to launch the show from our Gwaii Haanas trip, I felt the love across the sea, the mountains and the rivers. Tucked into my bed, ruby slippers by my side, my Cowardly Lion lovingly read “The Old Man And The Sea”. I clicked my heels, drifted off after Chapter One and found myself in Haida Gwaii.
Today, I face the nuclear MUGA. No worries. Got my wand, my rubies and Ernest.
The Kendrick Ladies with their beautiful smiles, in front of some of the works in Haida Gwaii
And here is my dear artist friend, Darrell Oike reading from the message and poem I sent on the wind…
Artist Darrell Oike reads my message and poem to accompany the opening of the Haida Museum exhibit. Photo Credits: Clint Kendrick
“Cancer has a way of turning your life upside down, although those of you that know me well, know that it’s picked the wrong person to haggle with. Death…or the threat of it, is all that is keeping me from you today. I did a bit of retail therapy after an appointment and picked up some “ruby shoes” this morning. I’m wearing them now. I wish, like Dorothy, that they’d transport me out of Kansas and into this room, this Oz…this…….. Haida Gwaii.
My time in Haida Gwaii and Gwaii Haanas National Park was sacred and special. From the time I arrived there, I knew that I needed to bring my family to see this incredible place and know it’s people, it’s flow and it’s lifestyle. That will happen soon.
While the land, the sea, the flora and the fauna all play largely in the mind when one encounters such abundance and diversity, I’ve come to ponder our place, our integration and our responsibility as human beings to change how we are – to rebalance – in order to maintain the synergy with all that is around us. The ancestors and those that came before us knew this. We have just to deeply listen to ourselves, the land and the sea to find the good way again. This is the way of the artist.
No artist worth their salt can engage in deep research and subject matter from a distance. They must be immersed, involved and see themselves as part of the work, the place and the spirit. Anything less is just clinical observation – which as science, has it’s place, but in art….requires the immersion of the soul, the heart and the emotion.
With an eye to the objective – the representational, but with a paintbrush filled with movement, spiritual guidance and immersion, I seek to create new works that describe three aspects of Gwaii Haanas – the real, (the touchable), the spiritual and most importantly the supernatural – the space in between where I most often find myself. I seek to integrate myself and my family members in those works in order to explore responsibility and identity within the context of those three worlds that I feel and see in Gwaii Haanas and all of Haida Gwaii. At home in my studio there now sit no less than ten monumental works in progress integrating the figure, the landscape and the sea of Gwaii Haanas and Haida Gwaii.
It is with love that my family and I wish to thank those that guided me safely through this wondrous place. A huge thank you to Parks Canada, Christine and Terry for championing such an important program, Heather for taking it outwards to the public beyond and to the Haida Museum Board Members, Nathalie, Jenn and Jennifer who so skillfully engaged us as a family. This partnership is important. It needs to continue to welcome those of us who come from afar in a touchable, tangible experience.
I want to thank Tana Hooper and Clint Kendrick and their families for welcoming us with arms open, keeping us safe, fishing me out from the Pacific Ocean and teaching us so very much in such a short period of time. Both of these dedicated Parks Canada employees should be commended for their passion, their professionalism, guidance and passion around this program. They have both continued to be sources of information and research as I begin a larger body of work.
A special thank you to Benita Saunders for her incredible hospitality while I was here. It is an honour to have stayed with you and I am forever grateful. I felt welcomed and loved and well cared for by this entire island community before I even stepped foot off the fairy. Haa’wa.
To Fanny and to you Darrell, as you now read these words, I am proud to call you brother and sister. I am in awe of your insight as artists and human beings and I am forever in your debt for your teachings. I know we will work together again soon…..(I’m writing the grant….ha ha!)”
In closing, I’ll leave you with a poem in the languages I know…
Oki Niksokowa. Is dee daniko, Iniskimaki, itan Makoyitsikin ikimopii Siksika
All My Relations – I am Iniskimaki, Sacred Buffalo Stone Woman, adopted daughter of Elder Tom Crane Bear, Wolfshoe of the Siksika Nation.
Greens and yellows as I have never seen
Roll, envelope and hold me
Life….and death….so close together
Waters, clear and dancing
Dangerous, abundant, changelings
Roll, envelope and hold me
Death….and life….so close together
Trees, Twisting, Spiritful and Overpowering
Wide, Wet, tall, growing on each other as if starving…or making love
Works in my studio to be delivered to OAG for CAMP
This has been a wild and wooly month. After being diagnosed with breast cancer just before Christmas, we’ve had a roller coaster of emotion and action in the household, combining doctor’s visits, show openings, Leighton Colony residencies, tests and surgery. On Monday, January 21st, just a week ago – I had a modified radical mastectomy to remove my right breast and the Level 1 and 2 lymph nodes under my right arm, which also showed metastatic breast cancer. In a few weeks, I’ll have treatments to get on with, to heal and make myself well again. My goal is to return to my studio at The Banff Centre by February 4th, which is ambitious but attainable.
The same time I found out that I had breast cancer, I was also scheduled for a two month heavenly residency at the Leighton Artist’s Colony at The Banff Centre, in my favourite studio – the Gerin-Lajoie. The project of this residency was to develop some major works out of my residency and time in Haida Gwaii. Time is a pinch point for me now…I also had my first solo public gallery exhibition opening at Okotoks Art Gallery!….and another in Haida Gwaii at the end of February.
As the saying goes, “Something’s gotta give.” Blog updates have been the first thing to go through this crazy month…but today I’m back at the computer writing, and playing “catchup” with all the news….between healthy sleeps, healing and pain medication.
Setting up “ABUNDANCE” at the OAG for the CAMP exhibition
Kevin straps the tipi installation to the truck on a cold December morning.
My first priority of course, was my health, followed by a quick decision to get all of the work for the CAMP show down to Okotoks. The staff at the gallery did an incredible job curating and hanging the work, and none of it would have happened without the support of Kevin and our family. It was an exhilarating experience to see two year’s of research and work leave the studio in Canmore and take a different form in Okotoks.
What first appeared to me to be a mish-mash of thought and style emerged as a wondrous and elegant exhibition in the hands of the curatorial staff at the OAG. I’m very grateful for their care and understanding of the work and the difficult time we were going through. We were blessed that my adopted father, Elder Tom Crane Bear, opened the exhibition with a smudge and prayer. I felt very loved and cared for in the midst of all the emotional and health turmoil invading my body. My family, friends and colleagues are amazing and deserve full credit for the success of this work. I’m so grateful to have such a supportive community. Sookapi!
The exhibition hangs at the Okotoks Art Gallery until February 23rd, so be sure to make a visit to see this culmination of works, so relevant to our current times as we all struggle with the use of resources, temporary claim to land and space and culture. Our Canadian identity is becoming more defined as each day passes with the Idle No More Movement, and I’m so proud of my family in both cultures.
The show must go on, and we must dialogue, work together with respect and find common ground for success.
It’s New Year’s Eve day, and I should be reflecting on my past year, reviewing the accomplishments and events, inspiring others to rally and focus their talents, supporting the Fab Four and #IdleNoMore, round-dancing at a local mall, getting big canvasses moved into a Leighton Colony Residency at The Banff Centre, prepping for the Gwaii Haanas exhibition in February and being excited about CAMP, my first solo show at a public gallery…..but I can’t. I have to focus on me and fight the battle of my life and advocate HARD through a government system. Why does everything have to be so hard? I can’t get any satisfaction from the Alberta Education system – I guess I shouldn’t be expecting a better result from the medical system. I write to deal with it. If you don’t want to read about the Matrix and my sarcastic outlook on it at the moment, stop reading right here and go back to your cushy Candyland.
I’m pretty sure that some of this news will come to you as a shock. It sure has sent me for a head over heels tumble, and it’s not a pretty story and there’s no guarantee of a happy ending.
Less than two weeks ago, I had a mammogram and ultrasound, followed by a triple biopsy two days later that revealed I have invasive ductal carcinoma (breast cancer). Imaging how our holidays have gone, if you can. Out of the three tumours, plus calcifications showing in the general breast area, there is one in my lymph glands and that one scares the crap out of me. My own doctor’s office has moved swiftly and done as much as they can to get me as an urgent case into the “system” in Calgary at the Tom Baker Cancer Clinic…..but it’s going as slow as a slug crossing a warm banana peel.
I’ve had a CT scan locally here in Canmore – but I’m horribly allergic to the dyes they use for these types of diagnostic imaging, so the results aren’t as great as they would be for a “normal” person. So far, my lungs and spine are showing as clear, and the liver is a “pretty much clear” but recommending an ultrasound. Apparently now, only the specialist can order up the further diagnostics required and get things going. I’m holding onto the story they gave me that this hasn’t spread any further…yet…but I feel like I’m lying to myself, and I don’t lie well.
Typical to Alberta systems, they’re a mess – they’re okay when things are “regular” but go out of the “regular” by say…throwing in a few holidays for doctors, and a few more cases than usual and you’re shit out of luck in the speed department to get an invasive spreading cancer taken care of. Apparently, the breast care clinic section of the Tom Baker Cancer Care Clinic handles it all from here. The rub is…they don’t seem to care too much about my breast right now. There are other breasts in the system and they don’t have enough doctors to handle all the boobs – they’re on holidays. Truly. Alberta seems to have a “quota” of how many severely diseased breasts and cancers they can serve at any one time.
WTF!!!! Am I supposed to make a reservation ahead of time???? This is URGENT.
The referral from my doctor went through last Thursday, December 27th to the Tom Baker Clinic. You would think someone could get back with an appointment time within 48 hours. Nothing. My GP suggested I call them. I did. I got hold of a nurse, after navigating three times through their phone system – to leave a message. They return calls four times a day. Nurse Ratchet called back on her next “round” to say basically, “I wasn’t a priority. I just had inflammatory breast disease. I must be in shock, but you could go years with this so don’t worry. You’re overreacting” There have been very few time in my life that I’ve been speechless or wanted to slap someone. This was one of them. It was like hearing some recorded alien at the end of the phoneline, totally disconnected from the conversation I was trying to have.
I realized Nurse Ratchet wasn’t really listening to me and there wasn’t much more use having this conversation. I told her she needed to review the reports and then told her that I would have my GP’s office call them to ensure they had the right information on Monday morning, as SURELY there must be a big mistake somewhere. This morning, my doc’s office made that call….left a message….waited for a call back and then called me to let me know that indeed….the boob surgeons were on holidays and they had received a number of ‘urgent’ cases in a short period of time.
So…they are saying that they are booking after January 15th right now…but my question is…how far after the 15th?
I still don’t have an appointment.They’re still not saying!
You haven’t even seen the Warrior in me yet.
How incredibly stressful this is. Am I going to be living a month with this ugly cancer before I even see a doctor who can do something about it and start the process for a treatment path? What is going on with your systems, Alberta? Capacity issues? Holiday partying….or more sinisterly…..is this the slowdown in service as the province and the doctors continue their 20+ month negotiations?
If it is….and I get sicker because of this slowdown, whether it’s due to capacity, or Doctor holidays, I swear to God there will be hell to pay, and I’ll be looking at Alyson Redford and the Alberta Medical Association to answer to my family. Because..AMA….if you’re “advocating for patient’s first”, you’re doing a shit job in my books right now.
I have a knife, I know anatomy, I can sculpt and sew…I’m not afraid to do this on my own if I have to. After all…this is the western frontier and Alberta is OH so innovative. (gag)