June – September 2013

Initially the crizotinib worked beautifully. By July we found out that some tumours had shrunk by as much as 80%. We were optimistic that he might even attain NED status (No Evidence of Disease). We knew there was no cure (yet) but there were so many exciting new drugs being developed and if JD could just keep going till there was one…

Ironically, his breathing and comfort level kept slowly deteriorating. This was very confusing. The doctors were very optimistic yet JD kept going downhill, slowly but surely.

Soon his pericardial sac was in need of drainage again. Another stint in the CCU in August; another 2 plus liters removed. His oncologist, Dr. Leighl, pushed for a painful sclerosing procedure to permanently scar the pericardial tissue to prevent future fluid buildups. We researched the procedure and decided instead, to have a pericardial window operation performed when we came back from a 2 week (doctor-approved) vacation throughout the American Southwest and West Coast in September.

May – June 2013

I lost my husband in 2013, on November 14.

His death was actually quite beautiful and peaceful and I want to share it with you.

Here is a brief synopsis of JD’s cancer journey.

JD and I started battling his Stage 4 lung cancer since his diagnosis on May 2, 2013. Ironically, this news came 1 day after his 54th birthday. What a present.

The diagnosis was a shock. JD had never ever smoked or been exposed to any of the known carcinogens such as asbestos. He hadn’t been around second-hand smoke for more than 40 years. Yet here he was, sitting in the doctor’s office and being told he had this cancer throughout his chest and god knows where else, and to put his affairs in order STAT.

What followed next was a whirlwind of diagnostic procedures to determine where the cancer was and wasn’t, and if it was a specific mutation for which there was a targeted therapy. To further complicate matters, he was dealing with a large malignant pericardial effusion, which was worse to deal with, symptom-wise, than the cancer. The fluid building up in the pericardial sac caused pressure on the heart which made it more difficult for JD to breathe or lie down. Untreated, it could lead to his heart stopping if a condition known as cardiac tamponade resulted.

Less than 2 weeks after the initial diagnosis, JD was admitted to the CCU for his first pericardial drainage procedure. More than 2 liters of fluid was drained from the pericardial sac, and he improved immediately.

Two weeks after that, we learned he had been accepted for treatment at Princess Margaret Cancer Centre.

Luckily, the cancer was in no other vital organs, like the brain. No sign of it in the bones either. And luckily, he did have the ALK-positive mutation of lung cancer. It was at this first visit that we learned JD had “won the lung cancer lottery” by having the ALK mutation.

This meant that instead of traditional chemotherapy, he could fight his disease by taking a very expensive pill called crizotinib (trade name Xalkori), twice a day. Although it caused intense nausea (easily counter-acted with another medication), there were none of the other disagreeable symptoms of cancer treatment including appetite and hair loss.

Started drinking alcohol, specifically wine, again. Sounds bad, I know…I told people my New Year’s resolution for 2014 was to take up drinking again, and I meant it. But not in a bad way, people!!!! In a socially responsible way…with friends, over a nice meal…that sort of thing.

Was at a birthday party last week at a local restaurant. The waitress asked me if I wanted to have some wine with dinner.

Sure, I said. Make it red.
What kind, she said.
Surprise me, I said.

The wine came in one of those trendy stemless glasses that looks like a small vase. It was excellent. Murphy-something (Goode, I think?).

Then I got the bill. My vase of wine cost $12.

Oh yeah, I was surprised all right.

I know it’s been quite a few years since I drank alcohol, but last time I was in a liquor store you could buy a half-decent bottle of wine for $12. Has it really been that long?

Sorry for the vulgarity and profanity. It’s just been one of those days weeks.

In the Village, there is a very popular high school teacher who was recently been diagnosed with cancer. He was a favourite of the Badass Daughter when she attended – a gym teacher and football coach – in his mid 40s with a wife and 2 small children. So sad and so unfair. He was diagnosed with the exact same cancer as my husband. Stage 4 adenocarcinoma of the lungs with malignant pericardial effusion. Also a non-smoker and example of healthy living.

Seeing the Facebook posts and reading in print media about this man and the campaign that has been started to provide support for him and his family trigger me almost every day. And I stand, teetering on the edge of the abyss, as I have to deal with the unwanted thoughts and memories of all the confusion, fear and despair of our brief but intense cancer journey all over again.

Yesterday I saw in a Facebook post that he possesses the ALK mutation (again, like my husband) and the family is thanking their supporters for all the thoughts and prayers, and writing how this is such a great outcome and means a better prognosis. I wish I could believe that.

I know now how the story ends for 99% of those with this disease, even with this mutation. Only 1% will still be alive 5 years after diagnosis. I really wish it will mean a better prognosis for this man and his family, but I can’t believe that, not any more. However, he has a very good chance of being spared at lot of the more harmful side effects of chemo, and as a result there will be a better quality to what remains of his life.

He may even be lucky enough to go into remission. I hope this happens and that it lasts for a long long time. Long enough for the next great cancer-fighting drug to come along and keep this man alive for many more years yet. That’s what JD and I were hoping for, for JD.

Yesterday I was triggered again, by another incident. I had hired a handyman to do some work for me, to ready part of my building for a commercial tenant. Came home Friday to find him falling-down drunk – he actually did fall down in my presence – and little to no work done. My agent came over a few minutes after I got there (thankfully!) and we got him out of the building and into a cab.

Got an email from him the next day apologizing and serving up learning of the death of an uncle as his excuse for drinking himself into a stupor instead of doing the work he was charged to do. Boy, that was the wrong thing to tell the recently widowed.

Hell, if I can face the world sober after what happened to JD and I since May 2013, anybody can.

I can’t begin to describe to you the amount of fury reading that sentence unleashed in me. Any compassion I had previously felt for this man (not much, but there was definitely some there) immediately vapourized. I gathered up his tools and stacked them neatly by the backdoor. I emailed him back that I no longer required his services and called bullshit on his excuse (after expressing condolences, of course).

I know, I read all about how we all grieve differently and that there is no right and no wrong way to do it. But I challenge that statement. Drinking yourself stupid on the job site and then asserting that you are going to drive home qualifies as a wrong way to grieve in my books.

I hope I won’t always be so easy to trigger, and that my fury abates and my usual levels of compassion for others return. But in the meantime, this widow is kicking asses (to the curb) and taking names.

Tonight I started back into my online MBA program again. For the first time since my husband died.

To say I am wrenched into knots with emotion and memories as I sit down at my laptop to partake in course discussions is a complete understatement of what I am actually feeling.

Everything just feels so wrong. I should be sitting in my old kitchen, hammering out posts at the table, while bantering and kibitzing with my husband, who is working away at the old desktop computer in the next room. I should be getting up every hour or so to massage his sore neck and shoulder muscles, and to laugh with him, and make each of us a hot tea or a cold drink.

Instead I am alone at my new place, in my new, still mostly disorganized home office. I am angry, I am blue, I am missing him so much I want to scream and tear my hair out…anything to distract me from the overwhelming sadness of continuing on without him.

Instead of doing any of the above, I put on my Widow Badass persona and craft a kick-butt first post to one of this week’s discussion questions. Omigod, it is so good it should be framed…no, bronzed!

At least, this is what the Widow Badass thinks. Mizz D is too distraught to care, for now. Thank goddess for the Widow B. She will get me through school, if no one else can.

Today I made hard-boiled eggs. The last time I hard-boiled some eggs my husband was still alive.

I can’t help but think these thoughts as I go through my days. Every event, every piece of clothing I wear, every thing I hear, see, think or do is becoming resorted and tagged as either Husband Alive (HA) or Husband Dead (HD).

The timeline of my life was changed on November 14, 2013. That was the date that the HD era began for me, at shortly after midnight.  As in, the last time I hard-boiled eggs it was sometime in November, HA. Today I made some again…it is February 23, HD.

I wonder when if I will ever stop using the timeline.

I started this new blog with great anticipation and energy and then….life got in the way.

We’ve had a serious medical thing going on in my family, which has taken up a lot all of my free time and energy and, to be frank, blogging was the last thing on my mind.

Now things are calming down a bit….still very serious, but seems more manageable….and I feel I have time once again to resume posting.

I never feel quite whole when I am not writing something, so I am really looking forward to taking some time again to do this.

Today is the one year anniversary of a radical change in how my husband and I eat and view food.

February 20, 2012 is when we left the comfy but unhealthy mainstream world of nutrition and dietetics and ventured into a new way of buying, preparing, consuming, and thinking about food.

We have been researching food and nutrition for about as long as I can remember. Last year we came across a number of books and websites dealing with something called “Paleo” or “Primal” living. We decided, both being scientists, that the changes we were about to adopt made sense and were supported by data. That mainstream nutritional thinking is suspect, and that current diet advice needs a good, solid dose of critical thinking applied to it.

We also decided to control the “experiment” on ourselves by not also engaging in any rigorous plan of deliberate exercise. No running, or weight lifting or any other sort of cardio or muscle-building activity. We wanted to see what changes would be wrought, with diet as the only variable.

So, here we are a year later. Here is what was lost and gained by me:

Lost: 25. 4 lbs

Gained: steady, plentiful energy throughout the day

Lost: heartburn (acid reflux, GERD, whatever you’d like to call it)

Gained: better sleep

Lost: bloating

Gained: glowing skin, stronger nails and hair

So far, the experiment has been a success. Stick with me as I continue on this journey through the prim(al) of my life.

You know, when I started the Whole 30 I dreamed and hoped for the day I could put this badge on the blog. Yep, first thing I was gonna do after I got up on Day 31 was post this sucker! And then I was going to make me some Perfectly Paleo Pancakes, and smother them in maple syrup and blueberries (‘cos JD and I decided to give up fruit for our W30 as well).

Well, a funny thing happened along the journey. The W30 became a W60 (Day 57 today!). And may very well become a W90, W120 and so on. Very unexpectedly anticlimactic.

Because, when you feel this good when you eat this way now…why would you want to go back to the way you felt and the way you ate before?

In addition to eating only whole foods, I also decided I might as well give up coffee and chewing gum. I’ve been a little concerned about the coffee monkey hanging off my back for while now, and this seemed like the right time. I just hate having to NEED something to jump start me in the morning – never a good sign!

No more coffee means no more coffee aftertaste and breath, and thus no more need to be chewing gum and ingesting all that artificial sweetener and other foreign chemicals. So it just seemed like the right time to DO IT ALL, and at once.

Fruit is back in the plan again. But that is IT.

At 22 lbs down since last February 20th (10 of those pounds from the W30), I figure I’m at about the 1/2 way point in my journey to a healthy weight. For the first time in a long time (ever?), I am heading into a new year without having to resolve to live a healthier life – I’m already here now, on this journey!

It amazes me that I have been able to lose this weight despite being the most sedentary I have ever been. As a grad student who works full-time, I’m lucky to get out for an hour long walk once per week.

My pedometer tells the tale of inactivity far better than I ever could. Some days, when a big assignment was due and I was chained to my computer, I was lucky to break 1,000 steps before falling, mentally exhausted, into bed at night. If anything, I should have GAINED 22 lbs this year.

I eat to satiation. I eat when hungry. I don’t count calories or fat grams or fiber or points or measure portions. My energy levels are high and constant. No more mid-afternoon fadeout. I sleep great, and can get by just fine on less if I have to (see big assignment, above!). I can go for hours between meals with nary a dip in blood sugar levels and the accompanying light-headedness or discomfort.

I never thought I had any digestive difficulties or food intolerances, but now – when I notice how quiet and peaceful everything feels inside – I can’t believe the difference. It’s like my body is finally running on the right fuel, instead of trying to make the best of whatever I was giving it before. No more bloating. No more acid reflux. I have transitioned from being a sugar-burner to being a fat-burner.

I am going to book a physical in the New Year. I’m very interested in learning what my blood work looks like now, with this diet high in saturated fats and low in simple carbohydrates.

I highly suspect everything will look just great, as it has for so many others who eat this way.

 

 

JD and I are on Day 6 of this 30 day self-experiment in eating per “It Starts with Food“, by Melissa and Dallas Hartwig (highly recommended reading, BTW).

No dairy, no grains, no preservatives, no sugars. Lots of clean, pure foods – heavy on the vegetables! We are focused on kicking our sugar demons to the curb and seeing what effect(s) this change in our diet has on our health.

So far, so great! I will keep you posted….Happy Halloween everyone!