Last night we drove the 3 hours to the city to stay in a hotel so I could get to my 8:00 am CT scan appointment. While this procedure was supposed to have been ordered by my Cardiologist there was no mention of it on the requisition. Since it appears my second aortic valve implant is being affected by a nearby aneurism, the cardio needs to decide if I can take the extra load that chemo will place on my heart. But as no record of the cardio on the order, nor a consultation with her was booked, we spent 6 total hours on the road and hotel costs for a 1 hour appointment for the CT that was performed less than 100 feet from her office.

Besides the surgery and the important prior check-up with the surgeon, we have had 3 single appointments that cost us a full day each for less than 10 minutes at each appointment:

Intake GP who hardly looked at me and scolded me for my “attitude.”

Consultation with Anesthesiologist who had very old records from my first surgery and ordered I see the head of surgical admitting to be sure they could admit me into intensive care if things “went wrong.”

Surgical admitting who made very light of bed availability, treated it as a joke.

It’s obvious to me no one considers that I am from a log way away or that my time and how I feel matter. They all talk about how “caring” the system is or how “complete” the coverage is. When I tell them this magical belief is not born out by reality, they refuse to listen or get mad.

For instance I’m now on two “critical care” lists that include direct lines to “help.” Both are only staffed 9 to 5 on week days and only take messages after putting on hold for up to an hour. Since no one phones back there’s no reason to leave a message so the back-up is the suggestion I see my local doctor or go to emergency. My doctor is a 5 week wait to see her and the hospital killed me last time I went there. In the magical land of medical belief, this isn’t the way things work so there’s nothing I can do–except display an “attitude.”

Probably now that I have their attention there will be another round of bullshit appointments over this and I’m done playing and will refuse to cooperate. This last surgery was very painful with all the clumsy needle work the anesthesiologist’s assistants did searching for arteries plus the pain in my incision frequently flares up but there’s no one to call so maybe I’ll just stop all this and take my chances.

Tomorrow I might hear the latest scheme. No more appointments or check-ups. Treat me or leave me alone.

The plot gets interesting

As mentioned I managed to get a female Oncologist and she managed to think to call my Cardiologist who called me this morning. Good sign #1 is they like each other. That matters in a system that doesn’t cross communicate between specialists very well.

Good sign #2 is the CT I had in June for the cancer can be compared with the CT I had April. Though the April CT was supposed to be for my Cardiologist, it was never sent to her (it did go to my doctor but she wasn’t told what to look for). The June CT actually did go to my Oncologist and with her in contact with the Cardio there are now a whole bunch of specialists viewing both images  Along with the possibility of the whole thing being coordinated to include my colorectal surgeon and my heart surgeon.

New schedule now might include another CT for confirmation or (remotely) to have heart surgery to add another stent over the aortic “bubble” that sits downstream of my most recent implanted valve. Or the chemo comes first.

It’s starting to look like I’m serious research grant material:-) Since I’m already signed up to donate my body for research it might as well start before I’m dead.


Some Results

Being not particularly smart at 5:30 am when we left for Edmonton we ran out of gas and were about 2 hours late to see the oncologist. (Three hour drive each way from home to the city and we are usually ready for things like gas stations on country roads being closed by always filling up. Not today). As it turns out they run a continuous intake until noon so I was fine being late–and we didn’t even have a fight in the car over whose fault it was! So that part worked out.

My CT scan shows no detectable cancer got past the tumor which is now removed. Statistically though the cancer cells may still be in there somewhere, so I get chemo for 6 months by IV. Could have had pills but they aren’t as effective. Two days every two weeks for treatment at the clinic which can be moved to a nearer one about 1 1/2 hours drive each way. This is still a sparsely populated area and that’s the closest. Our local hospital, which is 5 minutes by walking distance from my house doesn’t have enough cancer patients to warrant a clinic. Plus they are totally incompetent and a danger to healthy people. If you are sick, definitely stay away from them.

The CT also picked up a swelling in my heart at the exit of the aorta where my artificial valve is installed. This area was patched with mesh when it blew out along with my first artificial valve. Since my cardiologist knows nothing about this (nobody communicates) there has to be a consultation with her before chemo. Will also involve my colorectal surgeon, my new oncologist and my doctor. That’s 4 women “on my case” which sounds like blues classic so I think I’m safe. For now:-)

Date for things to start happening is expected to be August 11 for my IV tube to be installed. More when I find out.


Tomorrow is the appointment day at the cancer clinic and the part of this process you don’t get to hear are the fights and meanness that comes out Leslie and me as the uncertainty grinds on us. We don’t mean it, it just comes out, so these songs that make you cry are for my Wife Leslie and my friend Maha who grieves for her Dad.

Al Green- How Can You Mend a Broken Heart (Live on Soul!, 1972)

Try a Little Tenderness Florence + The Machine – Try a Little Tenderness- MTV Unplugged.mp4

Dana Fuchs – I’ve Been Loving You Too Long

Love never ends.


A long process this waiting for the next appointment is. Have had a full CT scan of the post-operative me and am now booked for an interview with a case doctor at the Cross Cancer Institute in Edmonton on July 24.

Haven’t written because there’s nothing to report between the removal of the tumor that included the possibility of cancer cells escaping into the rest of my body. As expected, the month and a half wait goes slowly.

I’m tired of it so it’s time to be more active. Have a dizziness thing that started about a year ago. Begins by my going cross eyed, dizziness, nausea and sweating. Scary loss of control but it can be managed with relaxation. If it carries me away then I fall down, so in risky places it needs to be focused on. Happened in the store yesterday and I just stopped and told people around me it’s normal. Used to feeel vulnerable admitting weakness, can’t do that any more.

Next is finding out if the cancer spread and will I need chemo.

Here I am to drive people crazy again

As someone who’s becoming indecisive and unstable it’s time to rethink my approach to being sick. Yes, I’m also tired of the duty to report which I thought was a cool idea at first except it has turned obsessing and unuseful observations.

I think more important though is as a community member there has to be a different aspect of the scary sickness story to cover. My friend Rebecca Hougue has been diagnosed with Breast Cancer and in a sense, sickness is already “being done” by someone younger and wiser than me in the RHIZO14 group. The perspective of a younger, more articulate and more active person is, well, more important than challenges faced by a 65 year-old. Yes.

And no, I’m not casting myself as humble or of lesser value, but I do have the option to take a different path to resolution. Negotiating for your life and understanding the unfairness of illness is way harder for a younger person. To feel the weight of an undeserved illness needs the anger strong and unaccommodating.

As an older person I’m bound to leave Rebecca her own space for working things out and I’m puzzled why this should be obvious? Our difficulties cross each other and our roles as equals is unquestioned. It’s not that neither of us “matter” more or less. Is this logic at the heart of a community that if there is unfairness it should be that we do what we can to distribute the hurt to be meaningful to the young while embraced by the old? Is this part of the curriculum of being community?

Yes, I’m open to comments.

Leaving not an option

Apologies for being all ovetr the map on this blog decision but it occured to me last night that it was the wrong decision to allow myself the “drama queen” (as Maha would say) of just walking away into the void. Most important seems a type of obligation a person has to their friends. Haven’t the whole answer to what “obligation” means, though to begin with it isn’t negative. My friends on the net are people I talk to inside my head all the time anyway. I see something Maha or Vanessa might like (or hate) and a silent conversation starts and I realized last night that this is how meaning is made for me. Real or silent contact has been built into a strategy for holding myself together AND as a way to ask hard questions, not just react as if I had a private version of the world that I could turn from or wave away.

So, things are easy or settled–not any more than they have been over the last 8 years. I do have a problem with anxiety that fires up when I’m cornered by health problems and this enhances the stress to the breaking point like last Friday when I stopped blogging. (Will write about the trigger later).

When admitted to the hospital with heart and kidney failure in 2012 I was asked if I wished to be resuscitated if I died. Yes, then a few hours later I went into self-induced shock because the nurse told me they weren’t able to locate my wife Leslie. When someone you love goes “missing”, even though she was only one floor down with her cell phone accidently turned off and not missing at all) everything leaves you like a giant flock of birds and I stopped the breathing their wings flapping within me sustained.

I didn’t die and when I saw Leslie again before surgery she said “promise you’ll come back to me.”


Everything fell apart yesterday and it’s time to dump this blog and switch to survival only. Sorry if conversations have been left incomplete.


New Start

Surgery is over and the hospital stay was a bit messy–more later. Follow up last Monday to remove staples and the incision has opened a bit. Definately will look like incompetant sword fighter from the front with all the scars.

Not all the cancer was captured in the procedure so chemo will start in about 3 weeks.

Leslie just found out she’ll be pensionable in 18 months. Time to plan for our next project.


Almost ready

Tomorrow we are off to the city for surgery on Tuesday June 3. I have a real sense that this whole process has nothing to do with me. The simple fact is I’m not to intrude and the disassociation I feel is silenced by condescending reassurance. It’s a strange feeling to be not there. Last time I fought it because I was dying and it kept me alive to resist.

This time isn’t so serious (depending on who you trust) so I’m going to try being silent.

BC Becky

Never thought I'd want to be identified as a breast cancer survivor …

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