Hope and a Nice Outfit

Have you ever noticed you get better service in a store or restaurant when you’ve taken the time to dress up?  My husband and I were getting ready to go meet Dr. M, the first doctor we would see after his diagnosis.  My step-father asked my husband what he was going to wear.  My husband glanced down at his jeans and t-shirt, “this?” he replied.  My step-father then offered a piece of advice that we would follow at every appointment…

“You don’t want the doctor to see you as a patient, you want them to see you as a peer.  You need to dress appropriately so that they will identify with you on that level.”

After we both changed, we headed out.

I am so thankful that Dr. M was the first doctor we would see in this ordeal.  She would be in charge of his colon surgery.  Not only did she have an outstanding reputation as a surgeon, but she was a positive force, and we loved her right away.  A surgery to by-pass his large intestine and insert a chemo port in his chest was scheduled for a couple of days later.  This surgery would allow my husband to eat normally and be comfortable. She reassured him repeatedly that it would be temporary.  Once the primary tumor in his colon was removed, she would put him back together.  But that would have to wait for now, because the immediate focus would be on his liver.

We left Dr. M’s office feeling a little better, positive, at least we had the utmost confidence in Dr. M and we knew there was now a plan in place, the ball had started rolling.  We had been informed that there would be a team in charge of my husband’s care.  They would conference at regular intervals on the best course of action. Dr. E would be my husband’s oncologist, and Dr. R would be his liver surgeon.  Nurse C would be the nurse navigator who would keep everyone on the same page and be a primary contact for my husband.  Chemo would begin immediately after he had recovered from surgery.

Meeting Dr. E for the first time was an entirely different experience.  I think we met him the day after my husband’s surgery, and dressed in a hospital johnny and hooked up to IVs, my husband was definitely not dressed to impress.  He looked every inch the patient he was, and was acutely dealing with his new reality.  I, on the other hand, was trying my best to offer comfort and reassurance to my husband, while dealing with the fact that the last time I had been in a hospital room was when my father had died of cancer two years earlier.  To say I was feeling fiercely protective of my husband was an understatement.  I was hoping that Dr. E would bring us more optimism along the lines that Dr M had… that wouldn’t be the case.

“You have metastatic colon cancer (stage IV) that has spread to the liver and possibly the lungs.  Right now it’s your liver that we have to focus on, and the tumors in your liver are not operable at this point.  This type of cancer is not curable with chemotherapy…  This is what you will end up dying of.”

He actually said that, “this is what you will die of”… I could see my husband deflating, and my blood was boiling.  I had this intense urge to lung across the hospital bed and scratch this doctor’s eyes out.  How do you know?! How do you know?!! How do you know?!!!  You do NOT know my husband, and you most certainly do NOT know me!!!!!!!  As he discussed the treatment plan, I could not contain myself and I think he could see the look in my eyes and the edge in my voice when I said through gritted teeth, “But there is HOPE right? There is a chance?”  This is it doctor, you better not leave here without giving my husband something to hold onto you bastard!  “Yes”, he said “there are always new treatments coming out”.

After he left I was horrified at what he had said, we both were.  We decided that we would not pass on that tidbit to anyone… and we didn’t, not until many months later.  We put that into a little box that we kept between the two of us.  That would not be our reality.

It was only a few days later, now out of hospital, when we went to meet with Dr. E again to discuss starting chemo.  We dressed up.  I had been planning what I wanted to say during that meeting.  It was difficult because my husband “the patient”, wanted and needed to be taken care of.  I, on the other hand “the supporter/protector/advocate”, needed more.  I told my husband on the drive to the cancer clinic that if Dr. E would not maintain an optimistic attitude (or at the very least an even one) that I wanted to find another doctor that would.  I didn’t think I could keep my mouth shut this time.

Turns out my planned speech was not necessary, out of the hospital environment Dr. E’s demeanor was decidedly different.  While not entirely optimistic, he didn’t bring the doom and gloom.  I could see why they had chosen him for my husband’s case.  They were about the same age, and I could see them being friends under different circumstances.  I was willing to give him another chance.

In all fairness to Dr. E, his job must be an incredibly difficult one.  I can’t imagine having so many patients in various desperate states… many (most?) of which will suffer and die.  We met with Dr. E regularly, and we looked forward to these meetings.  My husband and I could always tell when he must have had a harder day than others.  Perhaps when we had met him for the first time he had had a particularly bad day… I will give him the benefit of the doubt.  Maybe that’s how dire the the situation really appeared, we just refused to see it.  Dr. E’s emerging optimism through the course of my husband’s treatment was interesting to watch, as my husband’s response and recovery amazed at every point.

While I’m aware that doctors are obligated not to mislead, or sugar coat the situation, they must not be afraid of giving out a healthy dose of hope.  Without hope, there is no point.  Statistics apply to groups, not individuals… and you never know the capabilities of the person sitting in front of you.


Building an Army

I felt like we were going to war.  Every surgery, every treatment would become a battle in the war my husband would have to wage against cancer.  I was entrenched in this war too, my experience different from his, but I also would be fighting.  Cancer had already taken both my grandmothers, as well as my father only two years before.  It was not taking my husband.

As we told our families and our friends, after getting over their own shock and horror, they wrapped around us and pledged their support. I felt like I was building my army, all of whom I would take into battle with us.  I kept this visualization with me, of rows and rows of people who loved us standing at our backs, and I drew incredible strength from this.  I know that it also gave support and motivation to my husband.

I remember reading at one point over the past year something by a doctor who treated cancer patients… He said he could always tell the ones that would pull through and make it by their attitude and determination combined with the level of support they had from their loved ones, no matter how serious their situation.  Both were required, and the support was a critical component.

I charged my army with one important task, send us positive, healing thoughts and prayers.  I felt this wave of positive energy every time I sent out an update email to the growing list of recipients and I drew on it when I needed it most.

I don’t know how many people my updates actually reached, because I know they were forwarded on to others and verbally passed on to even more.  We received cards and emails out of the blue from those who had just heard, from all over the world.  I have to think that this single collective thought of healing directed to my husband had to have some kind of impact on our universe… at the very least I felt it, and it impacted me.  To all of you I send my deepest gratitude and let you know that I have your back if ever you need me.

The Power of Positive Thinking

People tell their children “ You can do anything if you set your mind to it”.  Is it true?  Some people say it is… “mind over matter”, “thoughts are things”, “the law of attraction”, “the power of positive thinking”, “self-fulfilling prophecy”, all curious and compelling concepts.

 A self-fulfilling prophecy is a prediction that directly or indirectly causes itself to become true, by the very terms of the prophecy itself, due to positive feedback between belief and behavior.

After the initial shock wore off after the diagnosis… Ok that’s not true, we were still in shock and still completely without information, however almost immediately made a pact that we would be relentlessly optimistic.  We didn’t know what we were in for or what would soon be happening (we still hadn’t seen a cancer doctor yet), but we knew that there was only one option and that was to beat it.  Nothing else was acceptable.  It may not be easy, but there would always be hope.

Our friends had lent us their well-worn copy of “The Secret”.  I had read part of it before and it had made intuitive sense to me, essentially you get what you give.  Face life with positivity and good energy and that is what will flow back to you.  The book tells stories about people achieving their goals by setting the thought in their mind as if it had already happened.  The end goal was an absolute, they knew it and felt it in their bones as if it was real.  Easy enough, right?

I suggested (demanded?) to my husband that that was what he must do.  It wasn’t good enough to hope for the best, he had to know it.  He had to believe with every cell in his body that he would do it.  And so, my husband set in his mind what he thought was a reasonable goal – cancer free in one year.

Luckily for me, my husband had a track record of setting his mind to a goal and making it happen.  I had every reason to be optimistic now in this crisis.  My husband would find a way, we would find a way together.  Looking back on the year we’ve had I marvel at how mentally strong he stayed through all of this, but I’m not surprised.

If he had told the doctors in the beginning that he would be cancer free in a year, I’m sure they would have either laughed or pitied his delusional self.  He had, what we discovered later, was essentially a full blockage in his colon and inoperable multiple tumors in his liver.

It was almost exactly one year after his diagnosis that my husband was declared cancer free.

We did find a way.  Many things came together to make this happen.  But did my husbands laser focus on his goal and mental toughness throughout this ordeal play a large part?  I have no doubt in my mind.