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.

Crepes anyone?

June is almost over and it looks like it will end rainy.  I have no problem with this at all.  I seem to think that last year this time it was sunny and bright.  I remember sitting on the deck with Kevin strategizing how we were going to tell people about his cancer, and what we would tell.  Our three kids were the hardest; our eldest lived five hours away, our daughter had just discovered she was pregnant with her first child and our youngest had left the province the previous fall to commence a four-year apprenticeship.

Life goes on, Kevin said, and it needed to especially for our children.  They had the rest of their lives to plan for, he didn’t want his illness to influence their life-choice decisions.  In his mind if they made decisions based on his health it would be short term gain for long term pain. Thus he wanted to provide initial messaging about his disease that was moderated.  He chose to tell them that he had lung cancer and that he would be starting his treatments as soon as possible.  For our sons, they received the information over the telephone, for our daughter she received it in person.  Either way it was exceptionally difficult.  For the boys all they had were words without any visual cues, for our daughter she had both, visual and verbal, and try as he may, Kevin’s words and actions didn’t quite align.

He was trying to tell people about his illness before he had even processed it himself.  He had a thousand questions, a million worries but not one answer.  With every person he told the impact and enormity of his situation became more and more weightier. With every retelling of the circumstances he felt compelled to try and comfort and console the person he was telling.  He knew he would fight his cancer with all his might, but he also knew that his prognosis was grim.  He was told in July that he had three to six months at best.  Chemotherapy would give him perhaps eight to ten months.  He opted for life and took the chemo.  That way he would meet his grandson, that way he had more time to say good-bye, that way he could hope a little bit longer for a miracle.

Today I had an intimate brunch at my house.  My sister, my sister-in=law, my daughter, her fiancé, and my infant grandson.  We ate in true Kevin style.  We had savoury crepes filled with egg and peameal and topped with hollandaise sauce, bacon wrapped sausages, home fried potatoes, and sweet berry and cream crepes for dessert.  This is what we likely had as brunch for Father’s Day in 2014.  This is what we had today to celebrate a special man.  He loved his food and he loved his family.  Today we did the best we could with what we had, and I know he would have loved it.

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.

November

Beautiful Ontario

Beautiful Ontario

The months have flown by since my husband’s diagnosis.  Everything has changed and yet nothing has changed.  Unfortunately with cancer you tend to live in the world of unknowns which can spin your mind whether you want it to or not.

When he was first diagnosed with cancer, my husband was given some options.  He was offered radiation to stop the spread of the cancer in his bones – which he agreed to.  At our intake meeting we were told that with radiation there is always the option to do more if it is required.  In our case five sessions were fine.  My husband was offered the option to try chemotherapy.  The Oncologist discussed how the treatments would work and, based on my husband’s condition at intake, what it should provide.  If effective, the chemo should provide enhanced quality of life for a slightly (a matter of months) prolonged period.  To date he has had three rounds of chemotherapy and received some excellent results.  Last night I asked my husband about his choices and why and what his present state of mind was.  I know he has been preoccupied because of his sister, but I also wanted to know how he was feeling about himself.

First and foremost he does not regret any of the choices he has made to date.  He finds the chemo tough, no doubt about it, but it’s those first two or three days after that are the toughest.  There are side effects, like the change of taste, that bother him but the further away from the treatment he gets the better things are.  He had other side effects that were likely associated with his pre-chemo level of health (i.e. diabetic type 2, stroke survivor) that were likely the most discouraging.  His advice to our children – make lifestyle changes now. Secondly he believes that cancer is still elusive to the medical profession.  They don’t understand it completely and consequently can’t predict how an individual will respond to treatment.  The medical professionals can give you statistically based information but they don’t know the spirit of an individual.  When he was given his first prognosis of 3 – 6 months without treatment, 8 – 14 with treatment, and even before he started chemo, he looked at me and said “I’ll easily double that.”

With respect to his current state of mind, this continues to be a difficult journey because of the unknowns.  At the outset of all treatment plans he was told he was terminal and all care was palliative, that he would never go into remission.  He has however, had some very good results with the chemotherapy related to his lungs.  We continue to await the results of a CT scan taken on Sunday to get a current assessment on his lungs.  If the cancer has effectively gone from his lungs – then where is he?  If he’s not in remission, what state is he in?  What does this mean for the future and what can we expect?  What does this mean for his original prognosis from a time perspective?

I believe that we have an appointment with Oncology next week, no one has called but I suspect that’s coming.  Likely the doctor will review the results of the CT scan as well as a pulmonary function test that my husband will have this Friday.  I don’t think I will wait until next week to get the results of the scan, I will call them this morning.  The psychology of cancer is the most challenging, takes you back to when you were a small child afraid of the bogeyman – you couldn’t see anything but the fear was real.

The Conversation

Dark, cold and the weight of the world on your shoulders.

Dark, cold and the weight of the world on your shoulders.

I’ve come to realize that there are certain conversations that are almost universal for cancer patients.  Just like the emotional stages one goes through, shock, anger, denial, acceptance – there are conversations that support each of those stages that must be remarkably similar.  There is one conversation that we had repeatedly in the few months previous to this.  It’s basis stems from  a meeting we had in early July of this year.  It was our first meeting with the oncology radiologist and occurred right after my husband got his cancer diagnosis.

In his mind, my husband had gone from healthy to stage 4 lung/bone overnight.  When we met with the oncology radiologist we asked a number of questions which resulted in a prognosis which I have summarized.  It is not a verbatim summary, rather it is what we “heard” and may not be exactly what was “said.”  But remember this is not about the radiologist – so what we “heard” is all that matters.  In short the radiologist said something like this: ‘You have Stage 4 Cancer.  Your prognosis is three to six months.  You will never be cured.  You will never go into remission.  Our work will be palliative, to hopefully provide you with a greater degree of physical comfort during your remaining months.’  Nothing wrong with this, probably based on years of experience and observation as a Rad.  However, let’s spin this differently and put it into a simple perspective.  It’s like a tennis coach saying to a player just before the big match, ‘The player you are up against is stronger than you. You’re going to lose.  It may go three sets or four, but you will lose.  Just make the best of it and soon it will be over.’

As a result of that meeting with the oncology radiologist we, my husband and I, have repeatedly had one conversation in particular.  It is a conversation that I think could have been avoided if the “facts” were presented differently. The conversation was never the same, but in general here’s how it went:

Him: “I don’t know what this is all for.  Why am I doing this?  I’ll never be cured.  What’s the point?”

Me: “The point is you don’t know what lies ahead – the radiologist doesn’t know what lies ahead.  The radiologist doesn’t know you.  All the radiologist told you in that meeting was the general statistics on this particular type of cancer.”

Him: “But I will never go into remission, I will always have cancer.  I will never not be without cancer.”

Me: “True.  But lots of people live with disease their whole lives and are never without them.  People with HIV will always have HIV, diabetics will always have diabetes.  Amputees can never get their limbs back. You have cancer.  It needs to be controlled and can be.  What we need to do is focus on progression remission.”

The thing is, I don’t think we ever should have had to have this conversation, no one should have to have a conversation like this.  It is a waste of energy at a time when energy is in short supply.  I think that first meeting back in July, a meeting which is embedded in his brain, has taken on monumental proportions.

Definitely the patient needs to know that their prognosis is dire, but even then provide some hope.  Qualifiers such as “at the present”, “at this time”, “based on the existing indicators” suggest that the patient can have some influence on their situation.  I am not suggesting giving false hope – lord knows we had no hope when we left that initial meeting.  I believe that medical professionals should be able to offer their observations and informed opinions when asked, but how they present them is quite significant.  When we were querying what the goal was with the treatment there was no mention of progression remission – this is something I went out and found while researching cyberspace.  And yes, most Stage 4 patients are unlikely to achieve this – but still some do.  Hope, even a glimmer of it, can make a difference in the outlook and determination of a patient.