Real Time – Part 2

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By the time we got the phone call to tell us that my husband now had cancer in his lungs, I don’t think either of us were surprised.  While I had desperately tried to convince myself that this could still be some crazy infection, I think the four days spent waiting for the test results while I plied my husband with every healing tonic I could think of, gave us time to prepare for what they would tell us.  We were on the eve of leaving on a desperately needed two week vacation, and we had already decided that we would go anyway… the thought of launching straight back into the cancer treatment scene was too much for either of us.

The next morning we called Dr. E and asked if it was ok to wait a week or two to start treatment.  He said he thought it would be fine, he was leaving on a week vacation too… we would set up an appointment when we were both back and talk about starting chemo again.  We got in the car and began the 9 hour drive to our home town, where we would meet up with all our family members and our kids and tell them this horrible news in person.  The irony was that this was to be a big celebration visit… our home town friends who had cheered us along since his diagnosis over a year before had organized a big party.  We called and told them we wouldn’t make it to the party, not giving a full explanation.

I don’t know if it was the long car ride, or the unbelievable amount of stress my husband was feeling at the prospect of telling our children and his parents for the second time that he had cancer, but by the time we arrived at my parents house he was worse.  My sister was due to arrive with her family and our kids the following afternoon, so we decided to go and tell my husband’s parents the next morning and come back and tell the kids after they arrived, just to get it all over with.

We arrived at his parents and dropped the news on them and his sister.  Awful.   It was scary because my husband seemed to be getting worse by the day.  He couldn’t really talk without having a coughing fit, he was in pain, and he had no energy.  By the time we were heading back to my parents to meet up with our kids, I think he was starting to have an anxiety attack.  This was what had been plaguing him since we heard the news.  When the kids saw their dad they could clearly see he was not better.  I could see right away that my husband wasn’t able to get the words out.  I explained to them what was going on.  They reacted in somewhat similar ways to the first time… Our daughter after crying pretended everything was fine, staying close by her father. Our son on the other hand seemed distant and was awkward around him. I wasn’t much help to them since it was taking all my strength to hold myself together.  It was great that they had their grandparents and aunt and uncle there to provide support, answer their questions, as well as provide a much-needed distraction from the devastating reality of what was happening.  It was great that I had them there too because I was on the verge of falling apart.

The next day things turned from bad to worse.  When I went to check on my husband after having breakfast, I could tell he was struggling.  Mornings were worse for his breathing, and I could tell he was having a hard time trying to get it under control.  This time it was leading to panic.  That was when he told me he felt like he was dying…  Despite the shear terror I was now feeling at hearing those words, I immediately started talking in soothing tones and moved to start performing EFT* (Emotional Freedom Technique) tapping on my husband. After muttering “you are ok, you are going to be ok” dozens of times while going through the EFT circuit, he started to calm down and regain control.  I left the room, found my sister, and collapsed into a hysterical mess in her arms.

My sister got the kids out of the house and down to the beach while I tried to pull myself together.  I made arrangements for the kids with both sets of their grandparents for the next couple of weeks.  It was clear that I needed to get my husband home immediately before he got any worse.  It was shocking how quickly his condition had deteriorated in a matter of days.  After explaining to the kids, we packed up and left first thing the next morning, making phone calls from the road to set up appointments for as soon as possible that week.  Now it seemed chemo could not start soon enough…

Next up: Real Time – Part 3…

* EFT is something I came across a few years ago on the Internet.  Similar to acupressure, you tap a series of specific spots on your head, face, and upper body in a designated order.  I first tried it to help relieve my headaches, which it does amazingly.  I’ve also used it to great success with my kids, to relieve anxiety and calm them, or to take away a headache, etc.  It is just an easy technique you can learn in a few minutes and do anywhere. It is a great tool to have for stress and pain relief.  I don’t send myself any special messages or anything… just tell myself, or my kids (or in this case my husband) that “you are ok”, or “you will feel better” progressing to “ you are feeling better”. 

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Real Time – Part 1

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Sometimes life changes on a dime… Sometimes it does more than once.

It was my intention that this was to be a story told in retrospect, a story that would inspire others and give hope.  I had barely started.  I hadn’t even gotten to the part about the 4 months of chemo, a failed colon resection surgery, a month of daily radiation, a successful (take 2) colon resection, a liver resection surgery, and the ileostomy reversal surgery.  Not to mention all the scans, research, supplements, alternative therapies, etc….  I had a lot of good stories too… But I guess that can wait for another time, because after only a few months after being “cancer free”, we are now back in the fight.

So, I guess we will now continue this journey together, in real time… I still fully intend that this will be a story of hope and inspiration, a success story.  I’m just not sure yet how it will unfold.  Here’s what happened…

After three major surgeries in a span of 6 months (January-June this year), my husband was feeling good, buoyed by his achievement.  He had had a foot of colon removed, and 75% of his liver removed in the process.  Though he still didn’t have quite all his strength back after the last surgery, he felt good enough to go on a business trip in early July, and promised to take it easy.  If it had been anything else he probably wouldn’t have gone, but it was the company’s big annual conference and they were unveiling projects my husband had been instrumental in.  He also wanted to see people he hadn’t seen in over a year, and start celebrating beating cancer.  I wanted him to have that moment.

When he arrived home he was tired… normal I thought, given his condition and the trip.  Then he started having a little cough…. Just a little bug, something he must have picked up on the trip… nothing to worry about.  But the cough didn’t go away and neither did the fatigue, it got a bit worse.  Then he started having shoulder pain, and then pain in his side.  At this point my husband was feeling pretty crappy and had already begun to take days off work.  Shortly after that my husband Googled “cough and shoulder pain” and it came back LUNG CANCER.

How could that be possible? I reminded my husband of the number 1 rule – Don’t Google It!!!!  Besides he was cancer free, we hadn’t even had a party to celebrate yet, and it couldn’t possibly come back that fast… could it?  He called the oncologist the next day and they set up an appointment for a CT scan for later that week. We were only a couple of weeks away from a long, long, overdue vacation, and the kids were going to my sister’s the week before so that we could have some romantic time alone…

The CT scan showed spots scattered through both lungs (inconclusive), something possibly on his liver (inconclusive), and slightly enlarged lymph nodes (inconclusive), as well as a build up of fluid in the space behind his lungs (probably the cause of the shoulder pain).  He was sent to a lung specialist to have the fluid drained from behind his lungs, which would be sent for testing.  I reassured the kids that their father would be feeling better once the fluid was gone, and put them on a plane to my sister’s.  I was still trying to convince myself that this was some kind of weird infection.  By this point my husband was not feeling well enough to work, he was exhausted and weak.  Removal of a litre and a half of fluid from behind his lungs had not helped his cough or his pain.  We spent a not so romantic week waiting for the test results.  We decided that we would still go on vacation no matter what happened… Maybe he just needed a break, we knew we desperately wanted a change of scene for a while, we were still optimistic.  The evening before we were supposed to leave, the lung specialist called… it was cancer.  My husband’s cancer had metastasized to his lungs.

Part 2 coming soon!

Finding a Starting Point, the Anticancer solution

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At some point that first week after my husband came home from hospital and started chemo, he went back to work.  I proceeded to attempt to get our ducks in a row.  I called our financial planner and set up an appointment for later that week, I also got a referral to a lawyer so I could get our wills updated.  I had no idea how long my husband was going to be able to work (even worse, I had no idea how long my husband would live).  I had folded up my part-time small business a few months before in order to focus more on the kids and other projects… little did I know the magnitude of the project that would arise and occupy so much of my time.

I met with the financial planner and filled him in on what was happening… and cried.  I met with the lawyer… and cried.  It was a rough week.  I was home doing these things, preparing for what I absolutely dreaded… my mind plagued by what was going on.  I asked my husband when he came home one day… “When you go to work are you able to forget? Not think about it for a while?”  He said he was, which I was very grateful for, because I wasn’t… and it was torture.

I spent days in front of my computer searching for answers.  I researched and made lists of supplements that had possible cancer fighting properties.  I read about alternative therapies.  There was so much information out there and I felt overwhelmed by it and the enormity of my task.  I needed to find a way to cure my husband, I just didn’t know how to start.

Of course everyone was telling me to put my faith in modern medicine, that plenty of people survived cancer these days.  As far as I could tell, we were being offered the best of what was out there.  But the more I read, the more I worried about the side effects and collateral damage caused by chemotherapy and radiation.  Would my husband be like my father and many others, have the cancer go away in one place only to have it come back or explode somewhere else?

Then a book arrived on our doorstep…  Anti Cancer, a New Way of Life.  It was sent to us from a friend, a breast cancer survivor, who had heard the news about my husband through the grapevine.  This book would provide the starting point that I had been looking for, as well as lead to closer friendships.  It also provided sound scientific reasoning that would convince my husband he needed to take heed of its advice.

Anticancer: A New Way of Life

The book is written David Servan-Schreiber, a scientist and doctor who was diagnosed with brain cancer.  It spoke to my husband from the very first page and he had read it cover to cover within days of its arrival.  It provided a road map as to how I could structure our diet to harness the power of the most nutrient rich, cancer fighting foods.  It also outlined everything we should avoid, not only food, but other things as well.  I think everyone should read this book, and I cannot be more grateful to our friend for sending it to us at a time when we needed it most.

Now let me just say we ate what we thought was a very healthy diet before all this.  I would buy organic fruits and vegetables (though perhaps not exclusively), we didn’t eat too many sweets, or fried foods, or soda.   I always tried to have more than one veggie on the plate at dinner, but our meals usually centered around meat.  We didn’t eat too much fast food, but we did eat it on occasion.  And cheese, we ate a lot of cheese (but I thought this was good for you… you need calcium right?).  If you had asked me then were we eating a healthy diet, I would have said yes, absolutely.  If you ask me that now after over a year of being on an anti-cancer, anti-inflammatory diet, I would tell you that what we were eating before was negatively impacting our health, all of us.  Every single member of my family has seen measurable improvements to their health over the past year.

I relearned how to cook, my family relearned how to eat, and we all became more aware.  And in the beginning it wasn’t that easy… but I realized you don’t necessarily have to know exactly where to start, you just have to start somewhere.  And so I did, with food.  The other thing I discovered is that once you start, you gain traction, and you can find your power. Once the blinders come off and you become aware of how you can take control of your own health and see results, it is amazing and empowering. The evolution and healing had begun.  And it is an evolution… because I am continually learning.

More to come…

Hope and a Nice Outfit

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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

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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

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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.

How Do You Tell Your Kids Their Father Has Cancer?

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How do you tell your kids their father has cancer?  Not only that, but the stage 4 there is no stage 5 kind of cancer.  How do you tell them this when you have only just begun to process this information yourself?

After leaving the clinic with his diagnosis, my husband and I had spent the day reeling from the news.  We revolved through feelings of shock, disbelief, fear, and grief.  We clung to each other and cried, unable to fathom what this could possibly mean for our near and distant futures. We read a few articles online as to what and how to tell your children.  Then I think we rented a funny movie and tried to take our minds off of all that had just transpired, and waited for the kids to get home from school.

We were a team, we had always been a team.  We left our hometown a month after we got married and moved to a different coast for my husband’s new job.  We had spent our entire married life together far away from our families, and what that created was our own very strong family unit.  We had no one to run to except each other when there was a problem, and I think we learned fairly quickly that communication and respect were key elements to our relationship.  This didn’t change after we had kids, they just became part of the team.

We briefly debated waiting until we had more information, until we knew what the plan was going to be before we told the kids.  But it was Friday, we weren’t going to see a doctor until Monday, and besides that, they would read it all over our faces as soon as they walked through the door.  We decide that we would just rip off the band-aid and get it over with, and then we would face it together.

I went back and found an email that I had written to my mother shortly after we told the children…

            We just told the kids… All things considered I think it went pretty well.  “Daughter (age 9)” burst into tears, but now seems calm and like she’s trying to pretend that it didn’t just happen (she’s buried it somewhere).  “Son (age 11)” was very concerned and wanted to know the odds of survival, and if dad was going to die, could he catch it?, is this the worst type of cancer?, who do we know that’s had cancer and lived?, etc. (he will stew with it I think)… Biggest concern for both is obviously is dad going to die… Heart breaking, but we managed to stay fairly calm.  Helps that we don’t have the hideous answers to these questions yet.  This has to be a bad dream right?

This began our policy of keeping the children in the loop on everything that was happening. It was important to us that they felt like we weren’t keeping anything from them.  We hoped that if they knew the plan, knew what was going to happen and when, that this would help reduce their stress and allow them to prepare for what would be happening to their father.  They were part of the team, they were part of this, and they would be onboard for all the changes we would eventually make.

The Diagnosis: Stage IV Colon Cancer

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In March 2012, my husband, at the age of 39, was diagnosed (seemingly out of the blue) with stage IV colon cancer and our lives changed in an instant.  In that moment we had to find a way to deal with a crisis the likes of which we have never faced before, not only for ourselves but also for our two children.  This is just the beginning of my devastating, crazy, incredible story.

There had been no symptoms other than some bouts of constipation that had begun around Christmas 2011.  Most of the time my husband felt fine, but it was becoming more bothersome.  He made an appointment with his doctor after the holidays in January, but my husband had what he refers to as a  “blow out” the night before the appointment so when the doctor was listening to his insides everything sounded like it was “moving”.

“Don’t worry”, the doctor said “you are too young for it to be anything serious”.

In February things started acting up again, but life got so busy… we went on a vacation and then my husband went directly from there on a business trip overseas.  Unfortunately it was at the end of our vacation when he started feeling not great, and while on his business trip there were a couple of days he couldn’t work because he felt so awful.  By the time he got home and got back to the doctor it all happened very quickly.

The doctor ran blood tests which showed some abnormalities… “maybe it’s a gall stone.”  From there he was sent for an ultrasound (Tuesday) and simultaneously scheduled for a colonoscopy.  The ultrasound picked up something and he was sent for a CT scan the next day (Wednesday). Thursday he did his prep for the colonoscopy, a miserable experience, but at this point we are still not really thinking it can be anything too serious… He’s too young for it to be anything really bad (and by bad I mean cancer, we all mean cancer when we think the worst right?).

Friday morning I went with him for the colonoscopy.  While we were in the waiting room my husband’s cell phone rang and it was his doctor… They had found lesions on his liver, “it could be cancer”… This is where it starts to get really scary, we really didn’t have much time to talk before they called him in for the procedure and I was left in the waiting room with these words ringing in my ears and the look of fear that was in my husband’s eyes.

At this point I was getting very sympathetic looks from the others in the waiting room, I think they may have overheard our conversation, or maybe it’s the fact that its taking all my strength to contain the freaking out that’s going on in my head, not to completely lose it… but it leaks out every now and then.

When I’m called back to see my husband in the recovery area the doctor is there right away.  “You have stage 4 colon cancer, it has already spread to your liver, I’m so sorry” she says.  Wait, no biopsy? No waiting for the test results? And how do you know its spread? Wait, what? How can this be happening? As she explains that the tumor was so large that she could not even complete the colonoscopy, that she is so sure that she does not need to wait for the test results, that she has seen the CT scan, that he shouldn’t eat because they might want to operate right away… This is one of those times when you feel like it might really be a dream.  This isn’t actually happening is it? The nurse is hugging us… this is bad, this is really, really bad.

Coming next “Telling the Kids”…