Category Archives: Cancer

An Impact Statement on The Kindness of Strangers and the Love Of Friends

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It was never a post I’d expected to write and this is hardly what I’d imagined as a post to mark my blog’s 7th anniversary (March 17th), and with apologies to my regular readers, some of this will be a bit of a repetition of circumstances previously written.

I know most of us never dream we’d write or live through the events I’d laid out. We know terrible things happen, but generally we feel safe that they happen to other people – over there. There is simply any place that helps us hold onto the fantasy that any distance from them is a protective cover for the rest of us.

When I got the call in January that my sister in Arizona was found on her bedroom floor unable to stand or speak properly and the concern revolved around possible strokes, in short order, I went into numb mode. That place where we don’t know what to feel, or maybe there’s too much feeling and there’s an *overwhelmed* switch that’s automatically tripped. We’d just been unwinding the numbing shock of the loss of one of our children only 20 days earlier. Maybe it was just continued numbness.

Some hours into news like this, we realize we must act and then thinking revs up again. What’s needed? Who will do what? When do we do whatever it is we figure we need to do? How can we support her kids? How will we do any of it? Then there are the really hidden thoughts, like, nope, I don’t want to be doing anything. This isn’t happening. This can’t even be real.

But, it is real, and very shortly after, we learned the real issue was a brain tumor. A very nasty, aggressive beast of a tumor. The scans showed it nearly covered a quarter of her brain, literally pushing it to one side. She had emergency surgery within 48 hours of being found on her floor and they were able to take out 99% of it. The surgeon said if she hadn’t made in when she did, it was unlikely she’d have lived another day or two. God, real, is a bitch.

Her cancer is never going away though. That’s a hell of a new normal to adjust to. They hope to help us keep her for up to 18 more months with heavy-duty radiation and chemo over several weeks. The days seem to fly by faster than ever. I avoid morbid activities like looking at calendars and counting back. I’m not always successful.

A rising sense of panic pushes me back to the questions about action. The more recent events of her world make sense now. Like, why did she suddenly quit her job and lose her health insurance and benefits? She couldn’t remember. It didn’t make sense to her either while she attempted to retrace her steps before the surgery. She couldn’t remember anything from 3 months prior. They have no idea how long ago that thing invaded her head.

We clearly had some heavy-duty work to do to sort how she will live until the end of this new normal inevitably. There was no way we could manage this on our own; we put out calls for help. That’s another exercise in faith and hope. When catastrophe strikes and you realize how bound you are in immediate helplessness, fear introduces itself in yet another incarnation. Who would even answer that call? Would anyone and if they did, would it be enough?

It turned out I wasn’t as alone as I’d feared. Friends responded with a generosity I couldn’t have imagined; even from a few that I’d never dreamed would be able to help. Yes, your $5 mattered, just as much as the gifts of $100 or more. I was on a plane within 3 days to get to her. They helped me get to her and hold her. They helped me get to look into her eyes and tell her, I love you. … It’s too hard to describe what all that feels like.

Those caring superheroes helped me get to the myriad mounds of paperwork needed to apply for assistance from myriad areas with their myriad requirements. Let me tell you, I don’t know how any of these agencies expect a patient to manage this. There was no way my sister had the ability to read through all the materials, let alone sort, fill-out and acquire the necessary documentation. Getting to that work alone was a huge step. After that, we’d had most medical and home expenses taken care of until at least the end of April.

How do you describe how much that means? I don’t know how to tell people just how much of a difference, how much of an impact their gifts create. I don’t think it’s possible to thank them at par value, I’m just so grateful that they accept my pitiful attempts anyway.

It was so hard to leave her. I wish it could be me that’s driving her to appointments, or shopping for her groceries, or just sitting next to her while we zone out in sister land in front of Netflix. Don’t get me wrong, I am so grateful for the services that we got to help her with that much, but I think you know what I mean.

I don’t know what the next steps will be, and we do know the calls for help will continue, for as long as it takes, but we’re taking it one day at a time. These are the experiences that crystalize that notion for us. Day by day, minute by minute. I can only pray that we’ll receive what we need and that we see the beauty there is to see and feel the grace we’re meant to, while we can. One day at a time.

Kininiskimotin, all my relations.

RL

Sister, Reva, her son, Jacob, and our beloved step-dad and mom.

Terminal Hope; Not Homelessness

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On December 31st, I wrote about hopeful expectation for the newest decade. I’d said I felt sizable hope but tempered with the need to tread carefully for a while. That thought was focused on the large-scale issues surrounding us: things like Indigenous treaty, territorial and sovereign rights; climate change; alternative energy fights; the lack of decency in all political governance and so on.

By January 1st, it was clear any trepidation about those big issues was not going to match the colossal wrecking ball coming much closer to home.

Today, I beg you to read my words to the end.

My last previous post was a small tribute to my beautiful, 22 yr. old. nephew who’d become a victim of the opioid crisis on New Year’s Day. Twenty days after that, we got devastating news about my sister.

Tragedies happen every day to families and as a family with solid membership in that pool, there are many days I wonder how we manage to keep going at all. But this takes me back to that sense of hope I’d mentioned. Maybe it’s something not fathomable at all. I don’t know what to make of it, but maybe what emerges from that hope is a greater good. I have no idea what that looks like either, but my heart is saying, hold on and do what you can. Do it with all the love you’ve got and wait. Apparently, that’s all I get to know. I’ll live with that; because we all do. That’s all we’ve got.

The rest of this post is the wording I’ve used for her fundraising campaign. Living in the U.S with little health insurance means this is what we get to do and in the very act itself, it’s clear this is something we have to do. I hope you’ll read this small part of her story, and I hope you will help in sharing it.

Hiy hiy,

RL

She was always fiercely independent and she’s still on her own with her youngest son, 14 yrs. old, but this is a fight no one can do on their own.

She lives in Arizona, where the beauty of its big sky and desert landscapes drew her years ago. She had a great job. She had a great apartment and a great car, but what does that matter when a tumor pushes your brain toward the other side of your skull and you no longer think with a healthy logic?  

She’d inexplicably quit her job, which canceled her health insurance and benefits. She couldn’t remember why, nor when she’d last paid bills or even if. She didn’t know how to feel. As in, how to react to what was happening around her. She still made sure her boy got to school and had food on the table though.  Carrying on was always the order; until he came home from school one day and found her laying on her bedroom floor, dis-ordered. She was unable to stand or speak properly, making only nonsensical short sentences.

Within 48 hours of that shocking discovery, on January 22, my sister received a diagnosis of a glioblastoma tumor, in phase 4. That’s her scan in the opening image; it’s clear where the tumor is. It’s very aggressive, incurable cancer. She couldn’t and still can’t, remember the entire 3 months prior. They removed 99% of the tumor, but it’ll never stop growing. We learned on February 20th that surgery bought her 12-16 more weeks without treatment, of which 4 weeks had already been taken. They said she could have up to 18 months with treatment. She begins those treatments on February 27th.

Terminal cancer patients should have time to prepare with their children for the inevitability. The dying should have peace to make proper, or frankly any, arrangements. They should be able wrap their arms around their family and talk about their love for one another and even, if blessed, have time to close wounds created within the damages of life.

$25,000 is to cover what we can for an estimated period of 6 – 12 months. This is the minimum calculated to supplement the assistance we’ve applied for including insurance premium funding. This is for rent, food, medications and seemingly endless unexpected/unknown incidentals. She will have to move by March 31, 2020 if we don’t have the rent for April 1st. Please help us get that rent, and God-willing for any months she has left after that.

This will give her time; precious, precious minutes, to work out what she can, to make whatever arrangements are necessary, especially for her kids. We just want to give her some peace and a few more months of hugs. We just want to help. We just want to show her our love, before she says goodbye. A lifetime for $25,000.

$5, $10, $20, whatever number, helps. Thank you, for any and every cent that comes her way.  Cancer societies around the world always say every cent counts, and it does. It really, really does.

. With deep gratitude please help if you can, and share either way.

With Lois, For The Win

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I determined I’d open  2017 with a gratitude post, but to be honest, and this is no complaint, there were so many avenues I could go, I wasn’t sure where to start. I’m privileged enough to have most of my needs met and most importantly, I have pretty amazing family and supportive community.  It was in this, that I felt inspired to say how writing has played a role in winning me some of that love and support.

Years ago I reported for newspapers, later side-lined for an opportunity to make a bigger splash by managing the start-up of a non-profit foundation.  After that, a similar turn in the private sector, and then onto the biggest job ever, motherhood.

Throughout those years, I continued to write – scads of your basic business letters and mountains of personal journals. Then Facebook came along.  Once in awhile I’d wax on, and on…. and on and fill my status box with a full-page of opinion. I’d get pretty good feedback, but more likely, I’d hear from Lois.

loisWe’d met at a performing arts studio where our kids attended.  Lois was smart, an English major and she was a writer. A real one; which she practiced with a business blog.  I enjoyed her replies to my status comments – witty and smart. Sometimes, she intimidated me. Not in a bad way, she made me want to try harder.  Then she brought up the idea of starting a blog. She’d simply suggest it now and then, until one day after yet another of my Facebook essays, her inner- warrior firmly tapped out the order, “Blog, woman”!!!

And thus a new blog was born.

Lois continued the encouragement through my spotty and rough start. I do know I’m not above some clunky writing here and there. Anyway, she was always very kind about it all and this was just an extension of her amazing generosity and wonderful, thoughtful presence.  Our shared connections always gave her the highest marks for decency.

Yes, it’s a cliche’ when I say it feels like only yesterday, when I got that Lois smack-down to work up to something. it’s especially so now, because we lost Lois last October.  A brain tumour discovered a couple of years ago overcame her.  I was out of town when she passed and I wasn’t able to attend her service.  Not unusually, I struggled about what to say to her family, especially from a distance.

I wrote her daughter, Kathryn, a friend also and within that note, I ended up explaining how her mother’s influence affected my life in ways that I’d never told Lois. I asked for permission to print parts of that note here.  I thought my 2017 gratitude for writing couldn’t begin without my 2013 re-start from Lois.  What writing has done for me over the last nearly four years is inextricably tied to her…

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Kathryn… I’ve tried so many times to write something to you about your mother.  It’s hard to admit a loss for words, but it’s especially frustrating when you want to tell someone how sorry you are for their losses of such significance…

I want to tell you what a wonderful person your mother was… is.  But you know that – and I am so glad about that for you and your family.

I want to tell you how much your mother influenced my life.  I want you to know how she actually changed it.  I want you to know that her insistence, with that boot to the butt,  that I write for real, introduced me to a world I had no idea existed and yet there it was, waiting for me to meet dozens of amazing people who would then move me along into opportunities I never could have dreamed were waiting for me.

Even love was there in that new world.  I found all sort of love and that too changed me and grew me up some more.

I would never have found new work that challenged me to use every creative thought I could muster. I would never have found friends that stand like sentries whenever I need.  My whole world would not have been so beautifully enforced.

Initially, I think I found it hard to believe that a writer really thought I was a ‘writer’.  I was once a reporter, but somewhere along the way, I’d lost the idea that what I’d write in my journals could possibly be readable, or understandable, or maybe even helpful to someone else.

Your mother gave that gift back to me. She made me take a chance by offering a glimmer of confidence that I could claim for myself.

So, I want to say, I am so glad and I am so enriched in so many ways to have met Lois.

I thank God for, Lois.

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I’d also mentioned to Kathryn I was certain her mother would always be a guiding force for her family. I can only hope that maybe now and then, she’ll continue to lend a hand to this very grateful writer.

RL

With a Little Help From My Friends; Paul Curran “The Invisibles” Part 1

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While I’m off batting away demons, some friends have come to bat for me by sharing some pretty amazing survival triumphs of their own. I am so happy and grateful to share them.

Think you’ve heard of some tough years? Read on for a chronicle of unbelievable, stunning setbacks and lifesaving ennui.

This is a two-part tale of an incredible trip to save one’s sanity along with body by the beloved blog-o-sphere cheering and writing champion, Paul Curran.  

paulcurran2015.-2As I lay restlessly in the hospital bed, a plan began to form. I was here for internal bleeding, one of many, many complications that had cropped up from my cancer treatment.

It was under control but I knew what it meant – I had lost my right kidney, which we all knew was happening and came as no surprise. An ultrasound had confirmed that there was but slim remnants of that organ.

This had been a rare side effect of the radiation treatment – a treatment that was really a pact with the devil. In my case it was exceedingly effective and had destroyed the cancer, but it also created a list of horrendous side effects from the destruction of my kidneys to temporary impotence and many others in-between. I was now officially a dialysis patient and would remain so forever, barring a transplant. That was hard to accept.

This was the final straw, and the worst was that I KNEW it was not the end of the side effects – which the literature says can continue to appear up to 25 years after treatment.

quotation mark 1At 45, I would pretty much be at the end of my life before I’d be done with the potential lifespan of side effectsquotation mark 2.

In the preceding year I’d spent all my savings on a degree that I finished just in time for an economic downturn; got laid off from my job because with the new degree I was overqualified; ended a 12 year relationship which meant giving up my house; was diagnosed with colon cancer and underwent radiation, chemotherapy and three operations.

I’d also suffered major treatment side effects including a colostomy, temporary impotence, a fistula between my bladder and rectum and then endured the many, many issues that crop up with dialysis such as multiple operations, scopes, colonoscopies, endoscopes, too many more to list.

Along with all of that, the engine of my car blew up. I was unable to work and with no funds left, I finally had to draw welfare.  The final topper, I had to move from where I was boarding because my landlady (not much older than me) died of a blood clot in her sleep.

I started drinking too much and clearly recognized that I was suffering from severe depression – certainly a state of mind that was natural given the few years of my life.

I had seriously contemplated suicide but didn’t have sufficient desire to follow through – sigh, a failure even at that. Ha! I needed help, of this I was sure and while lying in that hospital bed I decided it was time to get some help.

As difficult as my health issues had been over the previous few years, I had gotten excellent care and anything I desired treatment-wise was readily available. For instance when I came out of the last operation and recovered, I realized that they had cut through my belly button.

This meant nothing to me, but when my surgeon presented himself and asked if all was OK, I responded with: “My belly button is gone”! I was being funny, obviously having survived the cancer and surgery, my belly button was immaterial, but he took me seriously. “I apologize”, he said, “I can arrange for a plastic surgeon to rebuild your belly button and it will be covered under OHIP [the government health plan which normally did not cover non-life threatening plastic surgery].”

Invisible Beginnings…

Expecting mental health care to be as carefully and meticulously addressed as physical health care, I requested a psych evaluation – my intention was to eventually get sessions set up so I could talk my way through the depression and get a hand up back to normal.

In physical health care the doctors were so thorough that I sometimes had to turn down tests or watch for duplication. I had never requested help that I did not enthusiastically receive.

My requests for a psych evaluation went unanswered. I knew that the hospital had a whole psychiatry floor filled with patients and psychiatrists, but try as I may, I could not get one to come to my room.

After a week of asking daily, two interns showed up – doctors in training – who were not psychiatrists or even psychiatry students, but rather were doing a rotation in their training for a few weeks in psychiatry.

These students were typically kept busy doing case histories and such. I thought perhaps this was the route to a real psychiatrist, so I was cheerful with them and we chatted for an hour or so while they took careful notes. (They were humorous at times in their naivety and when I complained about the impotence, they asked how I knew.  Of course, I pointed out that I was sequestered here in the hospital so obviously it was an inability to masturbate – at which they turned all red, stuttered and moved to another topic).

And then nothing happened…

-Paul Curran

————— You can find Part 2 here ————–

Dejah is Soaring

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The bagpipes were playing and the Red Serge of two RCMP officers were present when we arrived for the service.

Hundreds of us gathered to say goodbye for now to Dejah; our hearts heavy as we looked at each other knowing this made it more real.  It was time to acknowledge that one of our babies had moved on.  He came to us through Glo and Bob, but we all saw how he was family to many more, some he hadn’t even met, but to whom he became beloved nonetheless.  Such was, or rather, is, his beautiful spirit.

The air was a mix of warm expectancy and wistful anticipation, the kind where we needed to say to ourselves – hold it together here.  Just hold it together at least until you can take a seat.  We pinned on little yellow ribbons in support of beating childhood cancer as we lined up to sign the guest book on our way in.

There was so much love gathered today through Dejah that at times it was overwhelming.  They were not tears of grief, it was the fullness of hearts spilling over.  All got lifted up with all the messages of love spoken by those who took turns to share their feelings and experiences with him. His sister Rayne couldn’t have had a better letter of sibling love to share with us.  His Uncle Dwayne spoke to that part of us that loves with a parental heart.  Family friends shared how their lives have been impacted by him and his family.

We watched a video that displayed how much life that young spirit lived in between the bouts of inconvenience caused by cancer invasions.  It was astonishing to realize how much life he packed into the short thirteen years he was to be here.  It seems miraculous actually. Through those pictures we saw how much he loved to laugh, and he showed what really living was about, even with insurmountable challenges.

One of his best friends, Tre, stood up and told us, in the way only a kid can, what it was to be Dejah’s friend.  He told how Dejah was a video game king that regularly brought his opponents to their knees.   Tre made us laugh as he admitted he was one of those friends who felt like crying when Dejah wanted to play a video game because he knew he was going to get wiped out within minutes.  He reminded us of what it means to be a kid when he described how they would put Dejah into a baby cart at the grocery store and run until it fell over, and then they would fall over laughing.  We were overcome by Tre’s beautiful recounting of his friendship, and from the wisdom, far beyond his years, that he gained from it.

Dejah was the typical hockey-obsessed Canadian kid – one happy to throw a dig at his soccer loving friend, Nuvin, in good-humored contempt.   This is especially funny because Dejah was the inspiration for the start of a fantastic organization, started by that friend, called Kick for a Cure.  They work to raise awareness and funding for research of childhood cancer treatments – mainly through annual soccer tournaments.

He was an inclusive caring boy who lit up the hearts of so many with a remarkably warm smile.  That was an often mentioned point.  He laughed, and loved, and played the hell out of life.

He showed, even today, that to really live is about grabbing the moment we have, this one right here and now, and making it as worthwhile as we can.

Grab the opportunity to smile and laugh at anything you can. Do whatever it takes, even something as crazy as recording yourself elaborately eating your last bite of a sandwich.  Just. Do. It.  You have no idea how funny that will be some day.

It wasn’t an easy life for Dejah, and just like the rest of us, he had some days that made it too hard to smile.  His lesson isn’t that life will always be easy, it’s make the most of it when you can.  Strive to make the most out of what you do have, while you have it.

All too soon, the celebration was nearing the end.  We were all given tree saplings to plant in his honor and then we were given blue helium-filled balloons.  It was time to symbolically release our fears and pain and send out instead, our love for Dejah and for each other.

We cheered as the balloons rose and we watched as they drifted up into the sky, up and up, and then somebody realized a distinctive shape to them.  Look, Caroline said, they’ve gone into the shape of a heart, and they had.  Somehow that didn’t really seem all that surprising.   It was just another addition to the moments that display the power of Dejah’s spirit.

An earlier post I wrote about Dejah has, so far, been read over 1,100 times on seven continents.  Those are the reads that I can track, the ones that I can’t probably drive that number into the thousands.

It’s astounding to realize that a seemingly average young boy from Eagle Ridge in Coquitlam has touched so many people around the world.  It boggles my mind to try to comprehend that his spirit has literally surrounded the planet.

Glo and Bob, that spirit that was to be such a gift to so many came through you, and you nurtured it until it became whole in its perfection, until it was time to be released.  You are to know that you did well.  You did very, very well.

Dejah's second last Facebook post

Dejah’s second last Facebook post

RL

The family requests in lieu of flowers that you consider making a donation in Dejah’s memory to (your choice):

Canuck Place Children’s Hospice:
https://payment.csfm.com/donations/canuck_place/donate/
or
Kick For A Cure:  http://www.kickforacure.ca/donate-to-kfac/