I Never Ask

I never ask myself anymore ‘who’s next.’  I stopped a long time ago.  Truly, right now it seems as if family and friends are under siege.  Could it be that we baby-boomers are a defective bunch?  Or is it just that life here in Canada is so harsh that it takes a greater toll physically?  That was always Kevin’s belief, he’d often say, ‘No, my dad couldn’t chose Australia.  He had to immigrate to Canada, where the winter is six months of the year, and the temperature is f***in’ 30 below for most of it.’

Yesterday a good friend told me that her sister had been diagnosed with a brain tumor. Not a dire prognosis, but anything with the brain is scary.  Her sister’s surgery is set for next Friday.  In this case everything is happening so fast it makes one’s head spin.  We talk and think about it in clinical terms because it is almost impossible to conceive of on a personal level. My friend has to wait and watch and feel powerless, because she is.  Then there is my sister-in-law who recently found out that her husband (they separated years ago) has been diagnosed with lung cancer, under much the same circumstances as my husband Kevin faced.  What to say?

The thought of anyone else in my inner circle developing a serious illness is a thought that I can’t entertain.  I remember a month or so ago stopping my daughter from talking about worries she had about her infant son.  They weren’t serious concerns, but the thought of anything, of any nature, occurring to one of my children or grandchildren destabilizes me completely.  I find I that swing to the extreme and my fear gets the better of me.  A residual effect from Kevin’s death, I am aware it is irrational, but that doesn’t make it go away.  And so, for my own sanity I never ask nor do I ever wonder who or what is next.

A Body Blow

In the last four weeks we have heard about two other individuals, younger than my husband, being diagnosed with either Stage 3 or Stage 4 cancer.  The effect on him is profound.  It’s like a body blow.  He withdraws from all interaction until he has puzzled through as he puts it “what the hell is happening.”  Then we usually go through the conversation again, about why he is even bothering, he’s had a good run, and now it’s the curtain call.

Yesterday we heard about one of our son’s friends who was diagnosed with non-Hodgkins lymphoma.  This is a young man – with a cancer that has been diagnosed as “aggressive”.  It’s frightening how arbitrary this disease is.  The cancer fighting machine has already started to turn; we heard that his treatments will start very soon.  This is a young man we had met at the hospital a few weeks back when the disease had not yet been diagnosed.  When we had left that day my husband had observed how many people we know that we have met at the Cancer Clinic since we started his treatments in July.  It was true, without fail, each and every visit we met someone we either were acquainted with or that my husband, a teacher, had met through his work.

So today I feel for a family that has received some dire news – the type that every family dreads.  I wonder what supports they have in place, what steps they are taking on an individual and as a family to battle the disease.   At this time I suspect they are being inundated with the “miracle cures” and the stories that everyone shares about someone they knew.  And I also suspect at this time they just wish the world would go away and leave them alone for a while, that somehow they could turn back time.  My learning from our journey, however, is that the world and the family and friends around them will be crucial in their journey forward.  Take the support as well as consider the suggestions they are given.  If I had to start our journey again I would gather my resources around me tightly and reach out more readily for those things we need.   Putting faith and leaving it to the “experts” is not just enough.  You have to have faith in yourself, in your family and friends, and believe that you can influence how the cancer treatment works.

Visit Pre-Chemo #4

We will take a lesson from Oblio and focus, focus, focus.

Oblio – the mighty hunter.  Every night we have a mouseacre in our backyard!

Yesterday was blood work and consultation with the Oncologist prior to chemotherapy scheduled for today.  This would be the fourth and final session in this treatment cycle.  We attended the clinic and had the blood work drawn and then waited to meet with the Oncologist.  Previously, after the third session of chemo, the Oncologist had reviewed a CT scan taken at that time and had given my husband very positive feedback but had identified a potential infection in his lungs.  Since that time, my husband had been for repeat CT scan to see if the pleural effusion in his lungs had cleared up as a result of the antibiotics he had been prescribed.

Again, yesterday’s results and discussion with the Oncologist remained quite positive.  The pleural effusion has not cleared up completely but has reduced slightly.  This led the Oncologist to believe that perhaps what was happening in my husband’s lungs was actually a reaction to the chemotherapy.  Based on that, and on the fact that my husband’s physical response after three sessions of chemo was likely to be optimal, we considered whether a fourth session would provide any benefit, or if in fact, it could present risk.

We were presented with two options.  First, my husband could have his fourth session of chemo as scheduled (today), after which they would enrol him in a maintenance program where he would get a small infusion of chemotherapy every three weeks.  The second option was that he could stand down from his chemo treatment, with no oncology treatments for two months. At the end of this period he would have a CT scan and blood work to determine the status of the cancer in his lungs/bones, and an appointment with Oncology.  With the first option he would remain immune-compromised, however, Oncology would have close scrutiny of the status of his disease.  With the second option he would be required to self-monitor and advise Oncology if anything was presenting that could show the disease was back in action prior to his two month appointment.   Needless to say, he elected to go with option two, and consequently he was able to have his picc line removed.

For us this is a slight reprieve.  We have an opportunity to make serious modifications to lifestyle and diet.  We have two months to continue to work towards improving my husband’s health.  My goal has always been to make him “that guy.”  The one the Oncologist will reference at the discussion table when considering what the optimal outcome is.  The guy that beats the odds or pushes the boundary just that much further.  Whether he will be that guy or not remains to be seen, however, we will explore all options and research thoroughly what is available.

Our first objective – switch to an alkaline diet.

The Dilemma – Sharing the News

Today we had a very familiar conversation with my sister-in-law.  It took me back to when my husband first found out he had cancer.  It was all about managing information flow.

Both my husband and his sister are very social individuals.  Perhaps it comes from being raised by immigrants; their parents brought them over from England when they were quite young.  Their cousins, uncles and aunts still remain overseas.  As newcomers to Canada they had to go out and make relationships.   To this day they both are very active within the local community.

When my husband got his diagnosis for cancer he was shattered.  He went from fine to Stage 4 in one day.  It was dark days and obviously still is troubled times.  For him to have to tell his story over and over was like torture.  He told a few, very few, family members and friends and it was all that he could bear.  It became a challenge for me to manage, since people didn’t want to get the news from me, they want to speak to him directly.  Imagine having to repeat over and over again the same awful news – and not when you are up to it, but rather on command, when someone decides to phone you.

My sister-in-law came by today and we talked about this.  She has quite a few phone calls on her answering machine and just doesn’t want to do the call back.  Can you blame her?  I know people are well meaning, but sometimes they can be unintentionally cruel.  To leave a message that says “Oh my God, I just heard the news!  Call me!”  does not make for an easy call back.  She already knows what it will be about and likely dreads hashing through the details to satisfy someone’s curiosity.  You see – it’s real for her, it’s not for the other person – it’s just a conversation and then they go back to their life.

Some people try to find common ground and they go through their own health aliments.  Really?  You think this helps – it’s cancer we’re talking about here folks – and it is not about you at this point.  Others will tell stories about people they knew who had cancer – sometimes there is no relevance whatsoever, does it help to know a  complete stranger got well?  And I should care because…?  Who’s to say it’s even true?

I think our favorite phone calls, and we still get these, are “Just thinking about you guys and thought I’d call.  If you need anything let me know.”  No pressure, no response required – but these are the ones that we usually call back – because we can determine what we talk about – we can even ignore the disease completely.

It’s all about empathy, compassion and consideration.

10 Days In

So it’s been 10 days since we got the diagnosis.  In that 10 days everything changed.  My husband has had to tell his story over and over and over again to the people around us.  There are still a number of people that we need to contact but haven’t yet.  It’s not a matter of who is important or who isn’t, the people who have been told are just the ones that are convenient.  That we’ve met in the hospital, at the store, who have come by our house.  There is nothing personal in the sharing of the information.  But it is not a feel good conversation, where you say, gee I guess I should call so and so and let them know I’m sick.  It’s not like that.  It’s just who happens to be around at the time.