I Stopped the Music

So I continue on reading through the different books I’ve been given.  As I suspected I found “Proof of Heaven” by Eben Alexander a little heavy in spots. It was beautifully written and the descriptions of his experience were very detailed and rich.  I loved the quotes that Dr. Alexander used throughout, for example:

“There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as if everything is.”  – Albert Einstein

“There are two ways to be fooled.  One is to believe what isn’t true; the other is to refuse to believe what is true.”  – Soren Kierkegaard

These quotes were worked into the fabric of the book, supporting the notions and premises put forward by Dr. Alexander as he recounted his own Near Death Experience.  Absolutely no one can challenge the nature of his experience, because it was his experience. That he put his credibility on the line within the medical community speaks volumes to his earnestness.  What and how he wrote was quite compelling.  In short, his story offers a pure hope for those looking for it.  On an academic level, however, I suspect it generates more questions than it answers.

Much like in the other books I have read to date, the author encourages meditation as a way to go beyond one’s physical self.  “Proof of Heaven” introduced me to the term “hemispheric synchronization” or Hemi Sync – the use of sound waves to provide a gateway for extraordinary awareness or relaxation.  I found this a beautiful irony since for my entire marriage my husband, Kevin, had literally preached to me about the role of music and sound in achieving inner peace and harmony as well as fostering creativity and joy.  Hadn’t I listened to Gregorian Chants and a Lammas Ladymass every night for the past several years because my darling husband had told me that the rhythms and tones would induce relaxation?  Wasn’t that why we got our Tibetan bowls, to use sound waves to heal?  Music was crucial to any period of creativity for Kevin, he didn’t want silence, he needed sound – when he was painting in his art room, the house would be filled with some sort of classical music or, in recent years, an opera.

On the weekend I thought about how I had stopped the music in the house.  I had done it quite deliberately actually.  It was done with full awareness, almost like a punishment, like I was punishing myself or maybe even Kevin for dying.  For the 31 years of our marriage each day, particularly weekends, would commence with some sort of music flowing through the rooms.  It was the first thing Kevin did in the morning, even before he’d turn on the kettle.  He would turn on the CD, TV, computer, stereo, record-player – whatever it was we had over the years, and the house would fill with music.  After he died I’d stopped it completely.  On Sunday I started it again and thought about how lucky I was to have had him in my life.   Where ever you are Kevin, my love for you goes on and on and on.

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.

Pre-Chemo Treatment #3

Demolished - in just one day.

Demolished. This is how we felt when we first got the news.

Getting used to this cycle.  Had to pick the prescriptions at the pharmacy in anticipation of tomorrow’s session.  Did some general running around to get ready – we have to bring our own lunch, so I went and got that stuff.  Today was a decent day for my husband – his taste buds were almost back to normal.  We included an anti-nausea medication in his morning medications just to keep his appetite up.  Today we had to have meals heavy in protein, as is the case tomorrow morning – they want him going into chemo well hydrated and with a good intake of protein.

The weather was nice so we managed to get outside for a bit of a walk.  We went to a waterfront park in our community for a change of scenery.  It is a very level walking path and as a result he was able to walk further than most occasions.  The leg is still painful to walk on – the clot is persistently slow in dissolving.  I’ve started to measure parts of his leg just so I can assure him that it is going down, even if it is by sixteenths of an inch.

I learned early on that I hated the numbers and stats they assign to cancer.  We made the mistake early on of asking for a prognosis, in general, for someone with his cancer.  When they gave us the numbers it was devastating.  I’ve since put this into perspective.  Cancer is as unique as the individual who has it and sometimes the numbers, in general, are just way off.  You decide whether you want to be textbook and buy in to the numbers they give you.  In my husband’s case we got the prognosis of 3 to 6 months and it cut us off at the knees – at first.  When we were able to think again we realized that we got a statistically based response not an individually based response.  However, getting back to being able to think again was tough.  Cancer can consume you, it can swallow you up whole so that all you see and feel is darkness.  That’s if you let it, if you can’t get past the numbers.  It’s that glass half empty or glass half full perspective.  I realize now we should have asked the question differently – something like – what’s the two year, five year and ten year survival rate for someone with this type of prognosis.  Because even if it’s one percent it means that someone’s doing it – so why not him?