Well Beyond a Game of Broken Telephone...

It’s high time a few misconceptions were cleared up.

Yesterday for the umpteenth time (and I’m praying it's the last) I had an interaction with someone who expressed surprise that I was out in public – and miraculously able to string two words together. One more person who had been led to believe that I had lost all control of my mental faculties and was no longer making sense at all due to the brain tumours that supposedly had invaded my brain.

My brain is just fine thank you very much. My body may be falling apart, but I consider myself incredibly blessed to be spared the tumours that can infiltrate the brain of ECD patients and cause numerous troubles. My faculties are intact, as the many people I frequently interact with, have lived with and continue to laugh with can attest to.

Last year I went through a tragic grief process akin to dealing with the death of a dearly loved one; and it wouldn’t be unfair to look at our situation from that perspective. I hit rock bottom with the loss of my marriage, my home, my business and my health, I’m not ashamed to admit that. But lose my sanity? I did not.  Mental health professionals whose support I sought as I went through my grieving process applauded the strength that I demonstrated under tragic circumstances. And continue to do so.

For those of you who’ve heard or read wild stories that I know are being shared, you might wish to look up the definition of “projection” in the arena of psychology.  I can most confidently assure you that I’m still the same loving , serene and gentle woman; a person who despite all that has happened can find plenty of humour under incredibly trying circumstances.

My daughter and I are moving on. We’re done with the turmoil, the wild accusations, and the unconscionable name-calling that continues to revisit me through the gossip mill. Done with living with the anxiety of what the next day would bring during the outrageously expensive legal proceedings.

We’re pleased that this weekend we finalized the deal on an apartment that we will call our own, after three months of being without a home. Trust me – if I was in the state that may have been described to you it would have become quickly apparent to those whom we’ve lived with in tight quarters. We were welcomed with open arms when we had nowhere to go, and now my daughter and I leave these dear friends who have become our family. They’ll continue to hold a very special place in our hearts and lives.

We’re okay. We’re not in great shape financially; we’ll be sharing a small one bedroom apartment when my daughter is visiting from school, trying to keep my very old car glued together so that my daughter has transportation to her part-time job, and counting every last penny. We’ll have to do without a lot, my budget doesn’t allow for the cleaning ladies who’ve made my life much easier over the last year. Even basic cable TV had to be cut with the realization that I just can’t afford the deductibles on my pain and cardiac medications without resorting to limiting ourselves to the very barest of necessities (this shall be an interesting experiment given that I’m pretty much housebound).

My health continues to decline, the measures being taken at this time are palliative and on some days that’s hard to swallow (and perhaps the decision to move into an apartment by myself isn’t the best decision given my physical disability, but I’ve been left with no other options due to financial constraints). The new place will be ours and we’re at peace with our decision to leave the memories of the last two years behind us. But that’s all they’ll be – sad memories that we’re choosing to bury.

But for goodness sake, if you’re going to partake in the string of gossip surrounding the circumstances of my ex-husband’s decision to walk out on me – try to remember who you knew me to be before. Whether you liked me or not, I’m still me. I’m done trying to understand how someone who when handed an option to leave when I was first diagnosed (a very difficult offer for me to extend three years ago, but thought fair given my prognosis) assured me with a loving heart that I would never be left to deal with this burden alone can have adopted such a drastically different perspective in a very short time frame.

Before sharing the tales you may have heard, please take a moment to consider how it affects my daughter when derogatory comments reach her. Do you know these stories to be true without doubt? If you're not sure, just ask me. I'll be candid about the challenges I went through during  this time, others have told me that they've been of some value in facing their own difficulties in life. My daughter’s not in the dark to the fact that I have my faults; you’d never hear me say that I’m without them.  She’s already dealing with the fear (and not an unreasonable one) of losing me to this devastating disease. Isn’t that more than enough for a nineteen year old to deal with?

Will I Be Asleep Before I Finish This Post?

Tonight is the first night trying out another new drug, this time it's Pregabalin. Typically used for the nerve pain of Fibromyalgia and Multiple Sclerosis - the hope is that some of my pain is caused by pressure exerted on the nerves by the tumours and not necessarily 100% coming from within the bones directly. Although it's not "on label" for ECD, the insurance covered the majority of the cost thankfully. But those deductibles are killing me on my extremely tight budget!

As an added bonus I'm told that this drug may make me feel quite drowsy and I might have a better chance of sleeping through the pain that always wakes me up a few times each night. The friend whom I was lucky to have join me in that particular doctor's appointment shared in my excitement at that prospect knowing how difficult my nights can be (we take our "high-fives" where we can get them!) Sometimes I'm lucky enough to drift back to sleep after a bit of meditation (or pain medication depending on how bad it gets), other times it's game over for the night and I have that unnerving time between 2-5 am to contend with when I feel more alone that at any other hours of the day or night.

There's always a wee bit of nervousness trying out a new med, I have a talent for having some odd side effects. Being alone and trying new drugs makes me even more ill at ease. No one to check on me, to make sure I'm okay, to hold my hand when the side effects are uncomfortable or disconcerting.

I'm still awake. I was really hoping that I'd fall asleep in the middle of typing this post  but no such luck.

Still here...playing Words With Friends.

Still here...playing soothing music.

Still here...thinking lovely thoughts about my beautiful daughter who turned nineteen today.

Still here...but getting too tired to worry about the fact that my right leg has gone numb.

Still here...barely...

Asleep now :-) Keeping my fingers crossed that I don't wake up for at least four or five hours. What's it come to when that's the best possible gift I can think of at this moment?

Membership Has Its Privileges

Membership* has its privileges (* in the rare and serious illness club)

Experimental treatments - tens of thousand of dollars

Hospital parking fees - highway robbery

Drug side effects - the cost in energy and productivity, through the roof

A booking for a new "knife-less" procedure next week? A no-cut angiogram? One less incision on this scarred up body? PRICELESS! Hurray for Dr. J for getting me in before I start radiation, he and his staff rock!

What Am I Made Of?

I’ve been on one heck of a wild rollercoaster the last months, but the last few weeks have been beyond the scope of anything I could have imagined. I shared last week that our separation agreement was at long last signed (tens of thousands of dollars in legal fees later; the delays and arguments defying to me, and many others any reasonable explanation).

The good news is that my daughter and I could finally look for a home, a very modest one but a place to call our own. A mission to find two homes actually, some pretty weird goings-on at the house in which she’d rented a room at university resulted in a mad search this past week for new accommodation for her (a long story – but I’ll let your imagination run when I tell you a pig was involved. As in a farm animal, and that’s far from the worst of it). We were successful in one search, and hoping for good news soon on the other.

A dear friend said to me that it seems like I’m trying to squeeze three months’ worth of tasks into the next two weeks and I don’t think that’s at all far from the truth. Between coordinating efforts with social services, doctors, hospitals, lawyers, insurance companies, movers, superintendents, contractors (though let me not forget the efforts of friends to make this all a bit easier), I’m trying to keep my head from spinning off. In the past, I've seemed to always be able to juggle and orchestrate myself through any difficult situation. This set of circumstances however, take the prize.

Everything that is - in or out - of my control is sucking every ounce of energy from me. What was it that I was told about taking it easy before I start high dose radiation treatment in less than three weeks? What I’m trying to accomplish is beyond reason for even a healthy person,  and to go it alone in this state of poor health is even more of an outrageous challenge.

As I scrolled through my to-do list on my iPad (over thirty phone calls alone in the last two days) I sat back and wondered to myself where I’m to find the stamina and strength to pull this all off successfully. What are my limits? When is enough, enough?

As it happens often with me, coincidences occur that seem as if they are only puzzle pieces falling into the place that they were meant to land. Within hours of having that chat with myself to take stock of how I’m to attack the weeks ahead, a  Facebook friend posted quotes from various authors with advice on how to write effectively. The following from Kurt Vonnegut caught my attention.

Be a sadist. No matter how sweet and innocent your leading characters, make awful things happen to them—in order that the reader may see what they are made of.

Who knows if our life plan is predetermined or bound by fate (I've been reading up quite a bit on Buddhism and Hinduism these days), but if there’s any truth to those concepts – it’s quite the sadist who wrote my life story out for me. And is this my chance to prove what I’m truly made of?

When We Could Fly...

I can think back on the moment as if it were yesterday. It's a summer day in our old neighbourhood in Scarborough, I'm hot, sweat beading down my neck and chest,  and so full of bliss I imagine the neighbours around me can see sunbeams shining out of my pores.

I'm telling myself to remember this moment, to treasure it. That one day, I may not have what I have right now. Almost reprimanding myself, Sandy - you must remember what you're thinking, feeling and most of all doing.

I'm running. I'm running foot races up and down our street with the neighbourhood children. My daughter running beside me, so are my niece and nephew who live two doors down. I'm at the time probably thirty-seven or thirty-eight years old, and running faster even than some of the pre-teen boys. We run over and over again, sometimes letting the kids win before the point comes that I have no chance against them anymore from sheer exhaustion. I suspect that some of the neighbours may think I've lost my marbles; why is she not joining the other grownups on the porch for a relaxing glass of wine?

Why I consciously decided to hold that moment in my memory I'll never understand. Probably at the time I was envisioning myself in my eighties or nineties, thinking that I'd be lucky to walk without a cane. Never imagining that walking just a short distance at age forty-seven would be as challenging and painful as it is.

I wasn't sick then (not entirely true, I've spent most of my adult life with health complications that might well have been the sprouting of ECD). But I wasn't hurting at that moment. I just was. Appreciating a gift that some never have a chance to know. I was going to take this moment, store it away and one day recall it and be very grateful that at one time I could run. Fast, strong, and with joy in my heart.

That memory comes back to me frequently. What blows me away is that I'm not feeling sad that I can't run any more, it's  a sense of overwhelming gratitude that I had consciously, deliberately appreciated the chance to run when I could.

Where Did I File That Gantt Chart?

There are the rare days when the realization that I’m seriously ill hits me particularly hard.

Strangely, it’s not the “procedure” days (an all purpose way of stating that I’m to be poked, prodded, scanned, sliced, tattooed, injected, sampled, radiated, operated on – or anything else they can throw at me). It’s also not the appointments in which I hear evidence presented to me that the illness has spread, or that my “numbers” are up/down (or just not where they should be). It’s not even the days when I feel so physically beat up and exhausted that it’s hard to think about moving my limbs, much less use them to lift myself out of bed.

It’s days like today,  right after I finished a phone call with a friend I’d not spoken to in quite some time. Neither of us have had it easy over the last years; there were many points on which we could relate and commiserate. I’d say we both have a positive view on our challenges, and can see what needs to be done and we do it. Probably the reason why years ago, while employed at the same telecom company we worked well together when on the same project team.

What left me unnerved afterwards was how indifferent I’ve become to discussing my illness and prognosis. And my death. To a great degree, my illness is my life. It has to be. It’s a succession of appointments, tests, treatments, side effects and symptoms. Absolutely every move I make has to take my condition into consideration. Are there stairs to contend with? Should I expect to be sitting up for a long period of time? Are there doors I’ll need to try to open on my own?

I was taken aback when I realized afterwards that I’d discussed my disease, prognosis and my plans for the future with as much ease as I would have years ago working out the details of a project at a conference table with my colleagues. Here’s what needs to be done; let’s figure out who does what and then get the show on the road!

Good old reliable Sandy, right to the end. Except some days it hits me exceptionally hard that this is the last project I’ll be working on. It’s not a business objective that I’m plotting, I’m planning the project completion of me.

Location, Location, Location...

To say that that the last eighteen months have been challenging are about as deep an understatement as I could possibly make. There are many of you who are aware of my personal and medical struggles, nothing hit them home quite as sharply as taking notice of where I was on the occasion of my ex-husband and I respectively signing our separation agreement. Yes friends, as of this afternoon that particular struggle is at long last put to rest.  As one astute observer put it, this experience was like having my arm cut off and then being asked to be thankful for being given back a finger.

On Friday afternoon as my ex signed off, I was having my legs permanently tattooed in preparation for high dose radiation treatment at the Juravinski Cancer Centre, in hopes that this experiment offers a smidgen of pain relief. Treatment I must defer because I don’t yet have a place in which I can properly recover from side effects, nor should I be traipsing around during treatment looking for an apartment. And note I said legs in plural – the bone tumours, as I had suspected, have spread to my left leg (and to other bones as well, they’ve gotten away with having a party in my body without my permission!) And not just spread, the little beast arrived and outgrew the tumour on the right leg in one short year. No wonder I walk as if I have lead sewn into the hems of my pants!

Today it was my turn to sign the paperwork. My lawyer came to meet me; and where was I? Again at the hospital of course! Waiting to discuss how the results from a barrage of tests (with more to come) affect my prognosis and what my quality of life might look like during the time that's left. Signing the paperwork in a room in which I've received a great deal of bad news over the last few years.

I can’t help but remember a video I'd found on YouTube when I was first diagnosed with ECD. A doctor specializing in hystiocytic disease said, of all the nasty diseases under this umbrella – “this is not a particularly good disease to have”. Ain't that the truth. Especially when you face it on your own.

An Undoing

My lead doctor called me a week ago last Friday, it was a chance to update him on how things had gone at the cancer centre the afternoon before. In a post in previous days I’d written about how he’d planted the seed about irradiating my heart. I’m still not ready to even begin considering that option (it’s more than a little disconcerting that I’ve not found any info on the internet about such a procedure and I’m trying to evaluate how vast the risks are that I’m willing to take in the name of pain reduction).

At the end of our call that morning, my doctor quickly added “CBC. Watch at 5 p.m. on Monday. A film crew has been here with my team for the last few days and I'd like you to catch it if you can”.

There’s no DVR machine where I’m staying, and didn’t have any luck finding anyone who’d be able to record the program for me. But I was able to watch a TV for the hour long program that afternoon, and I was thrilled to learn that my doctor (and a primary benefactor for his team as well) were both to be featured on a documentary highlighting the accomplishments of Jamaican-Canadians in a wide array of fields.

My heart filled with gratitude and warm memories as the program included an interview with my doctor, showed many of his associates whom I’ve come to meet, and panned the lobby of the hospital wing that was named after him in a ceremony almost two years ago.

I was at that ceremony. It took quite a bit of effort physically to be there, coming from our home about an hour from downtown on a blustery November evening. It was arranged that a friend drive me to the train, and I met my husband at the station in the city and we proceeded by cab to the hospital.

As the only patient invited, I felt so honoured to be there and nothing was going to stop me from attending. My husband so carefully held my hand as we made our way up and down staircases; and as was his habit he’d invisibly form a circle around me that no one could enter lest they bump me and break one of my fragile bones or cause me any pain.

My reason for holding the honour as the sole patient in attendance was because in the months prior, my doctor had given me the privilege of photographing him for a project to be entitled “Empathy”. It was his idea to include my husband and daughter in the photo session, and from those photographs a beautiful painting was created (by a doctor who happens to be multi-talented) that was used in a campaign for 3M. I'm also told that sometime in the future it will hang in the National Gallery of Canada in Ottawa as part of an exhibit honouring outstanding Canadian doctors. Postcards of the image hang on bulletin boards around the hospital; it always make me smile when other doctors point out that they know my photographs inspired the painting. And they know because my doctor will tell anyone who’ll listen about how this all came about. His humility is astounding; he finds any way he can to give credit to others. We all know the truth of what an incredible man he is and I couldn’t be prouder to have contributed in a small way to recognizing what he does for his patients and the medical students/doctors who have the phenomenal opportunity to learn from him.

 I watched his segment of the program with tears in my eyes, thinking about all that he, his team and the benefactors have done for me over the last three plus years.

But then it flashed on the screen. I knew in my gut it was going to appear in the program, and there it was. The painting.  On the big screen I was seeing my husband and my daughter interpreted in a lovely piece of artwork that sums up so much to me about empathy. When we did the photo shoot I was so grateful to my family for agreeing to take part. At that time all three featured in the photograph conveyed what was desired. Empathy. The three of them were doing everything possible to support me as patient, a wife, a mother and I was beyond grateful to have so much love around me.

It felt like a punch to the gut. Here I was on what would have been our seventh wedding anniversary, looking at my husband on TV (or more accurately the back of him). Remembering the ceremony at which he kept telling me how proud he was of me. To anyone who would listen he would say how grateful he was to be by my side, proud of my courage in fighting my illness, that I was his hero, that we made a fantastic team. That it was so easy to forget I was sick because our house was always full of laughter, affection and love. Hadn’t Sandy done a wonderful job of portraying the intended emotional response?

A few short months later (incidentally soon after doing a radio interview for CBC radio in which I praised his unrelenting support) he told me that he wanted out of the marriage (or at least wanted a version of marriage that turned my stomach). That he hadn’t loved me for years, didn’t like me anymore and at times even hated me. And vehemently, at that.

A punch to the gut. Trying on one hand to share in the thrill that my doctor, his family and his staunch supporters might be feeling after watching the program but reeling from the reminder of what used to be. I was told that when the exhibit opens in Ottawa I’ll be invited. I’ll move heaven and earth to be there to support my dear doctor, but I don’t imagine at this moment that I’ll have it in me to ever look at that painting again.

A Bit of Light Reading

At the end of my consultation with the radiation oncology team on Thursday I was handed a blue fabric bag, in it were several booklets to educate me about what's to come. Courtesy of your tax dollars and donations to the Juravinski Cancer Centre my fine people, I thank you.

The bag has been at the end of my bed for four days now. It handily could be used for groceries, in a pinch work as a purse, store wayward trinkets, collect dust.  I continue to think of all kinds of uses for the bag, but I struggle with actually stretching my hand in to start reading what I'm supposed to be reading in preparation for the first step - the tattoos.

I already know how tattoos work, don't I? You decide to permanently imprint your body with a design and it hurts like the dickens. That I know I can deal with, I already wrestle with the dickens on a regular basis. And if I would choose to get a tattoo, I'd probably stop at dots and little lines anyway - once I realized that it does hurt a lot I'd beg them to knock it off. I'm not a glutton for punishment. Some of my blog posts may suggest otherwise, but truly I'm not into that sort of thing and trying to run (hobble my way?) in the opposite direction as fast as I can.

I'll be reading about the radiation treatments, the risks, the side effects... stuff I think I've pretty much already learned on Wikipedia and the Mayo Clinic website. I have a lot of time on my hands, education has become my full-time occupation. Besides staring longingly at my big New York City photograph sitting just beyond my lovely blue bag. They really ought not to be in the same sight line, but it's a small room that my daughter and I share, and I need to keep my stuff on my own side. It reminds me of car rides when I was little, my brother and I were not to let any part of our physical self cross the imaginary line dividing the back seat. Let me tell you, it's only he who broke that rule, I was a perfect angel :-)


So the bag still stares back at me. The details of the end of the appointment are a bit of a haze, one of the specialists took out the booklets - crossed out a bunch of pages that aren't relevant to my situation (pleased to hear that I'll be escaping the risk of erectile dysfunction!) The booklets were placed carefully back in the bag with a kind smile and assurance that I could call the team anytime if I had any questions. The reason I was in a haze? She had drawn on her knee with a pen to indicate how the tattoos would look, it was all I could do to not glance down and wonder how many people will think that I've taken to doodling on my legs out of sheer boredom. And that led me to wonder if the tooting grannies (a few posts back will explain) were still in the waiting room.

Heavy stuff in that bag I'm sure. Nothing so far has given me the incentive to reach in, so instead of trying to think of further uses for my bag I'd like to anticipate the titles I'll find therein.

Tattoo!! God Bless You...
(which especially amuses me because as soon as I finished typing that line I sneezed, and the jiggle of the laptop - on my lap - sent it into reboot. Which gave me time to think of more titles because this old clunker needs a good fifteen minutes to get going again. Which leads me to think of that side effect I won't be experiencing).

A Tree (Limb) Glows in Brooklyn
The Secret Life of Beams
I Irradiate You (Truly, I Don't Like You at All  You Nasty ECD Tumours)
Sitting on the Dock of the (CT scan) Bay

Trust me, it gets much worse, I'll save you from more groans.

Which reminds me of a dream I had the other night. It was a stupendously welcome change from the months of retched nightmares I've been having (do I have my sleeping pill to thank for that?)
I was part of a comedy troupe, ad-libbing to the riotous cheers of the crowd. Kind of like the dreams where I speak French and German fluently (why not add Swahili?) and have handsome and adoring men falling at my feet (don't you know that they're lined up ten deep in real life for a woman in my condition? Terminal is the new sexy!)

A girl can dream. But she also must get down to doing her homework.

A Case of Mistaken Identity

One step forward, three steps back. Usually the pattern seems to be two steps back, but it’s just been that kind of a week. And month. And year.

Upon hearing the news on Thursday that I’m eligible for radiation therapy for pain management, yesterday took another downward turn. After pleading my case for the last week, the CCAC is recalling  the wheelchair pad that many of you have seen me hauling around to doctors’ appointments and for the rare outing. That thing had truly been a blessing for the last six months. Most of my day is spent in bed trying to take pressure off of my hips and legs (hence the addiction to Words with Friends, on-line courses, whatever it takes to occupy my mind in a semi-productive way on my iPad. As for Angry Birds, I’m going with the excuse that it’s good for my manual dexterity!). For car rides to the hospital or for longer periods of time visiting with friends, the wheelchair pad allowed me to sit with considerably less pain. Instead of trying to contort myself to shift weight from my hips, I could get away with appearing to be a healthy person for a good half hour or more.

To put it bluntly - I’ve not expired quickly enough. My allotment of time for use of the pad as a palliative patient has passed, but they can put me in touch with the manufacturer to purchase one for about $750 (as if I have that kind of money floating around, they’re well aware of my situation of being without a home and financial support). This “expiring not quickly enough” concept is wearing a bit thin in my world right now. Some of you know to what I’m referring, and it's damn unsettling to those who are aware of what is going on in the background with our personal situation.

I know the direction that this is heading. The disease is spreading, and I’m getting worse. There is no question about that. In the last forty eight hours I’ve had the following conversation three times with specialists (various phrasings, but you’ll get the drift).

“Sandy, you do understand that the radiation is only meant for palliative treatment to try to decrease your pain. Right? There’s no reason to believe that it’ll slow down the progression, and we need you to understand that”.

I’m sorry, but at what point did I express that I had any hope whatsoever that I was going to get better with any of these experimental treatments? I may be a “glass half full” kinda gal in many ways but I do understand the prognosis. I just want less pain! And most certainly the physical challenges and test results indicate what is going on (it’s pretty amazing that my heart hasn’t imploded yet according to the data downloaded from my pacemaker. The Energizer Bunny just keeps on going!). 

Add to that, a conversation with one of my Toronto Western doctors who asked me if the Hamilton team would be willing to irradiate my heart. Hmm, have I just been told that other options for cardiac pain relief are no longer viable? The logical thing would have been to immediately ask if that is truly the case, but I just couldn't go there yesterday. And don't think that I can for at least a few days, there's just too much to absorb at this moment.

Back to this issue of qualifying my treatment expections. My self-identification as a generally happy person is confusing the heck out of many. Because I'm in their office with a smile on my face and an occasional joke, I fear that they sometimes believe that I’m not taking this seriously.

This is the way that I’m choosing to come to terms with my various challenges. I pick my battles, because I don’t have the energy to fight them all (and there are some really crucial ones on my plate right now that suck every ounce out of me on a regular basis). There are many aspects of my life that are out of my control, but I do get to choose my attitude every day. I want to be the person that others still enjoy being around (and to my friends, I thank you for letting me know in so many ways that you think that I’m worth spending time with in person, on the phone, on e-mail or Facebook). Heck, I just want to like myself when I'm on my own! Being cranky just doesn't feel pleasant at all.

Don’t let the failing body fool you. I’m still in here. No false hopes, just a strong desire to spend the rest of the time that’s left with a smile on my face far more frequently than you’ll find a frown or tears. I still want to enjoy what I can with abandon, love the people I love and graciously accept kindness and love in return. Lie that it may be, sometimes I just need to hear that everything will be okay - to keep me going even though as every day passes it becomes less of a truth.

What Goes Around, Comes Around

Some of you know that a dear friend recently gave me the gift of some downloadable university lectures (and another friend kindly provided the bandwidth for me to transfer them to my laptop). The course which I selected was Great World Religions; it’s been absolutely fascinating and what I’ve heard has led to some truly amazing conversations with friends. Normally I’d consider religion to be a sensitive subject to address, but these are friends whom I trust to converse about these issues without judgement.

The subject of karma is often brought up. Many of you may understand why I struggle with this. Over the last year and a half I’ve faced the end of my marriage/loss of my partner and most avid supporter, the loss of our home, the shutdown of my business,  and my only child leaving for university. Not to mention that whole serious illness business. All of these falling into the category of the top stressors one can face in life. And all at once. I’ve tried very hard to be a loving, honest and kind person (as like most people, at times I’ve had my failures in my attempts to be the best person I can be). Asking “why me?” seems a natural question to ask.

As I go through my course, one message seems to be abundantly clear. All religions, however differently worded seem to attempt to follow a version of the Golden Rule. Treat others as you wish to be treated. Karma as I understand it follows a similar basic concept. What you give out comes back to you. The religions vary as to whether one might expect the repercussions to occur in this lifetime or another; but it all comes down to doing the right thing. “Work hard, be kind”, to take a quote from an inspiring documentary that was loaned to me about a teacher in a Los Angeles elementary school.

Seven years ago when we moved to Burlington, I was trying to gain a foothold locally for my portrait photography business. It’s often suggested to photographers starting out in a new market to donate one’s services to a local charity; when a local clothing store mentioned that they’d gladly accept a portrait package to be auctioned off in support of the Juravinski Cancer Centre in Hamilton, I was pleased to participate.

Shortly thereafter, I had the pleasure of photographing the family of the woman who had placed the highest bid at the auction. And it was my pleasure to do so several times more over the years; this in turn led to referrals to photograph quite a few of their friends. One little donation led to many photo gigs, not to mention to new friends who might well be among those of you reading this.

It didn’t go without notice and a smile that yesterday I sat in an examination room at that same hospital, the Juravinksi Cancer Centre. I was hearing the news that upon review of the pathology of my bone tumours (I’m the first case of Erdheim Chester that they’ve seen) – they’d be happy to give radiation a try. In their opinion, I had a about an 80% chance of pain reduction. We’d start on both legs (I received confirmation that the tumours have spread to the left side in addition to the right). If successful, we’d move to where other bone tumours have grown and cause me significant pain.

The doctors had clearly done their research. The few ECD patients elsewhere in the  world who’d tried radiation treatment for pain had been administered a lower dose, and in these cases it appears that pain returned fairly soon after completion of the treatment. With my permission, they were proposing high doses of radiation in hopes that pain relief would be longer lasting.

In the next week or so I’ll be heading over to the hospital to get my marker tattoos to accurately guide the radiation beams. My vanity disappeared long ago; I’m so marked up by surgery and accident scars I’m not the least bit bothered by the permanent markings. Heck, we can even have a bit of fun playing connect the dots to see who comes up with the most creative design!

The treatment schedule unfortunately is likely to be delayed, two months out and my daughter and I are still without a home or financial support of any kind. The last thing I need is to be packing up again (albeit on a much smaller scale this time), moving and unpacking during the rigors and side effects of treatment.

But there is one huge bonus in this. For once, funding of treatment is not an issue, all radiation treatments are going to be taken care of.  Bless you karma. I’d like to believe this has come my way because the owner of a lovely little shop in Burlington gave me the chance to give so many years ago.

P.S. My mail was just picked up, my first opportunity in the last week. Nine more anonymous NYC postcards. Thank you, whoever you are! I promise that once I’m in my own place I’ll make every effort to watch all of your favourite NYC themed movies. Some of which I’ve seen (and will happily watch again) and others will be new for me. What a delightful surprise to distract me on a day full of calls and paperwork I’d rather not be tackling!

A Bit of Levity

I'll soon explain in another post why I was there today (and for me, it's significant Erdheim Chester Disease related news!), but I wanted to share the following conversation overhead in my oncologist's waiting room this afternoon. Some of you have already read this on Facebook, I'm happy to see the "likes" to know that you found it amusing as well. I was hoping it wasn't the case that I get out so infrequently in public these days that I find just about anything funny! 

Envision three elderly women, seated with walkers at their side. Very animated as they speak, and apparently unaware that everyone else could hear them.

"What's your favourite ice cream flavour?" They exchange replies.
"How about the best burger place?" again, answering each other.

"Did you know that bar food is better than anything else?" Oh really?
"Have you ever boiled lettuce by accident, thinking you were making cabbage soup?"

 By this time, I look up from my iPad to realize that these women had the rapt attention (yet the pretense of not paying heed) of all the other patients in the room.

 "Have you ever tooted on a bus and pretended that someone else did it?"

And with that, I got called into my appointment so I'll never know if it's just something that elderly ladies in general try to get away with.
:-)