Real Time – Part 2

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

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!

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.