A Second Day of Infamy - The Story of My Acute Leukemia Diagnosis Part 2

Have you ever wondered what goes through the head of someone when they are diagnosed with Cancer, or more specifically Acute Leukemia? 

Today I will attempt to give you an inside pass to this question as candidly as possible.  This is story of the events that took place on the fateful day February 5, 2010, Diagnosis Day 2.  This is Part 2 of my 3 part story and picks up where I left off yesteray, A Day that Will Live in Infamy - The Story of my Diagnosis Part 1. 

In today's edition we will continue my journey to being diagnosed with Acute Leukemia, examine the emotions and thoughts that I felt receiving the news, and meet two angel's along the way.  Again, today's post is fairly long so grab a coffee or beverage, get comfortable, and enjoy!
The early morning went by pretty quickly.  By 6am I was no longer able to think about sleeping.  I think every muscle in my body was cramped from cramming in that little bed.  After watching that elderly man looking for his wife the previous night, I wouldn't have changed a thing.  I had know idea what to expect with the coming day, but I knew that by the end of it my life was probably going to be drastically different.  My mind was starting to run through all the potential outcomes for the day, and so sleep was no longer an option.  On the surface I was still hanging onto to the hope that there was some mistake and it was a viral infection, but deep down I knew better.

7:30am came around and now I was starting to get really hungry and thirsty.  Not having drank or eaten anything for 7.5 hours was starting to wear on me.  On top of that the start of my day was nearly upon me and I was beginning to get very antsy.  I had this constant urge to get out of the bed and go for a walk.  I knew Amy was doing everything in her power to keep me calm, relaxed, and in one place but I had a couple tricks up my sleeve :)  To calm my nerves, I went to the bathroom a lot.  Most of the time I had no reason to go, but it nice to get up and go for the small walk.  At this point, it was just about killing time until the porter came to begin my second day of testing and diagnosis.

The porter came very promptly at 8am.  We were just planning on leaving our bags with my bed, assuming we were coming back, but we were informed that we were being moved to another room after the ultrasound, so we packed up and off we went.

When we arrived at the ultrasound room I couldn't help but feel bad for Amy. She had to stay out in the hallway by herself, while I was taken into the room.  I can only imagine what was racing through her head with all that was going on as I was taken behind the closed doors.  The nice thing for me was when you undergo tests there is always a technician present, so you always have someone to talk to, and thus keep your mind from racing.

People often call me very detail oriented.  When I am in situations like this, this quality comes in handy. 
During tests I always try to probe information out of the technician.  They are usually very good at dodging my probes, but I can be very relentless and come at the same question from all different angles. 

During this particular test, anytime the ultrasound wand moved I wanted to know what was being looked at and how it looked.  Each time, the technician would just ignore me and take some measurements.  I paid very close attention to the process and realized that after we had finished taking measurements of all my organs, she went back to focus on my kidney, liver, and spleen. The kidney and liver she only took a few extra measurements and then moved to the spleen.  While examining the spleen, she took numerous measurements, all the while trying to dodge my continued prodding.  My hard work paid off and I finally got what I was looking for, she let it slip that she thought my spleen was slightly enlarged but needed confirmation from the doctor. 

The exam ended right after she finished with the spleen.  She didn't seem to be too worried about it, so I didn't worry much either.  By this point all my mind could focus on was a large glass of cold water and a delicious breakfast. 

I could see the sense of relief on Amy's face as I walked through the doors.  I think half her fear was when I went behind the doors, I wouldn't be coming back out. I won't throw her completely under the bus, I was very happy to see her too.  To be back together again gave me the strength to continue down this road of discovery, and deal with whatever came my way next.

Like I said earlier, we were being moved to another room instead of being taken back to my hallway "bedroom".  This new room seemed like miles away from the emergency ward.  I don't think I could have found it even with a map.  It seemed like it was deep in the bowels of the hospital.  At some points, I even wondering if the porter was lost since it was taking so long.  The icing on the cake was en route to the room we had to go past a Tim Horton's.  You know how hungry I was, and now I had to watch people walk by eating those delicious breakfast sandwiches.  I almost jumped out of the wheelchair and made a dash for it.

We finally arrived at my new home for the day, while we waited for a hospital bed to open up.  As soon as we walked through the door I knew I was in trouble.  For the rest of my life I will never forget this room.  Certain places give you bad feelings, and this one was giving off the worst kind of bad feeling. 

It was a fairly large room with three stretchers in it.  There were already two patients in the room, leaving the third stretcher for me.  Looking around I felt like I didn't belong there.  These two patients were two of the sickest looking people I had ever seen.  The pit of my stomach instantly knew something was wrong, but I pushed the feeling aside telling myself this room was only a temporary stopover.

I examined the room a little more and realized that one wall was covered from end to end with what looked like lazy boy chairs.  I then saw what will haunt my dreams for as long as I live.  In the back right hand corner was a tiny room with the door closed.  Just looking at it sent shivers down my spine, so I avoided all eye contact with it completely.  I think subconsciously I thought that if I didn't look at it, I wouldn't have to find out what was behind that ominous door.  I even made sure I sat on my stretcher in a way that hid the room completely from my line of sight.

Being in the main room wasn't all bad, it was where we met our first angel.  She was a ER nurse helping out for that day, and was assigned to look after me.  She was so warm and motherly, you instantly felt comfortable in her presence.  As soon as I was wheeled into the room, she ordered me breakfast.  What made her so great was she even looked after Amy.  Amy didn't really feel like eating anything, but this nurse refused to allow it.  It was a standoff that Amy quickly lost and succumbed to some chocolate she was offered (the diet was officially dead and gone :) )

After breakfast Amy and I played some cards to pass the time.  I don't think you can actually call it playing cards, as I don't think we even finished one game.  We would start, get maybe halfway through, and then move on to another game.  Our minds were definitely elsewhere.  I can't speak on behalf of Amy, but my mind never was glued to tiny room in the back corner from the moment I saw it.

After a little while longer the nurse told us she had to do an a quick examination and take a little blood.  It was at this point she almost lost her angel status.  She told us that we had to go to the back room because the equipment was located there, my stomach dropped.  With every passing step I could feel the anxiety build. The room was literally 10 feet away, but I swear it probably took 2 minutes to cover that distance.  I could feel my heart racing faster with each passing step.

When she opened the door and I looked inside it turned out to not be that scary of a room.  There was a hospital bed along one wall, a computer along another, and two chairs side by side the third wall.  There was a tiny window on the wall with the computer, about the size of a basement window.  Instead of thinking of it like a basement window, all I could think was prison window.

Since the equipment for taking vitals was in fact in the room I began internally forgiving the nurse for bringing inside the dreaded room.  After the vitals were finished, I had almost fully forgiven her until she brought out the supplies for more blood work.  That was the end of my forgiving.  For someone who was afraid of needles, this was the fourth time in under 12 hours I was going to be poked.

As I examined the supplies I realized this was no ordinary blood test.  Normally only 2-3 tubes are taken.  Lying on the tray were at least 10 different vials, all varying in size.  The instant I looked at them my anxiety and stress went through the roof.  I almost jumped out the bed, and made a break for it through that tiny window.  I might have even tried, had I thought I would fit.  If only I had one more month on Weight watchers, I surely would have made it ;)

I knew the nurse could see the stress building on my face because she did something I will never forget.  She told me a story:

When she was younger and at the beginning of her career, her daughter got very ill.  Her illness was one that required many blood tests.  But every time she brought her daughter in for a test, the nurse performing it would miss her daughter's vein.  As a nurse seeing these other nurses continually mess up angered her greatly.  But as a mother seeing this other person hurt her daughter infuriated her.  She said she felt like a momma grizzly bear, and wanted to kill every nurse that missed a vein and hurt her daughter.  As time went on she learnt an invaluable lesson, how to detect the nurses that never missed a vein.  Before she would take her daughter in for the blood work, they would roam the halls looking for the oldest, ugliest nurse they could find, and ask her to do it.  Never again did a nurse miss her daughters vein.

At the end of the story she told me not to worry, because no matter how hard I looked, I would not find an older, uglier nurse in the whole hospital.  This brought a laugh out me I wasn't expecting and all my stress was washed away.  She performed the procedure with the grace of an angel and I didn't feel a thing.  The whole time she continued to talk and tell jokes, so both Amy and I would relax as she was "draining" me.  When she finished she told us to sit tight as there was just one more thing, and she left the room.

It was only a few minutes until the door opened again and a doctor walked through this time.  I instantly knew my fate was about to be handed to me.  He introduced himself as Dr Hussein, a Haematologist at the hospital.  He sat down across from us in the chair at the computer.  Thankfully he was a no nonsense guy and got right down to business.  He told us he had been looking over my tests all morning and I had Leukemia. 

BOOM! my whole world came crashing in.  I didn't know much about leukemia, but I knew it was a form of Cancer, which meant I had a very real chance of dying.  Every cell in my body was becoming overcome with emotion, and my mind was quickly shutting down.  I knew I needed my mind to be sharp, but no matter what I told myself, it continued to go blacker and blacker, until I was finally overcome with emotion and broke down crying for the first time in years.  I won't even begin to try and understand what Amy was thinking or feeling (she can save it for her memoirs ;) ) but she was right there with me crying away. 

While this was all going on, the most incredulous thing happened. Dr Hussein tapped me on the knee and then turned around and started checking his email on the computer.  I was stunned.  Amy and I just looked at each other in disbelief at how insensitive this was.  This man just walked into this dungeon of a room, delivered the worst news of our lives and then had the audacity to check his email! 

Thankfully he left the room shortly after, telling us a message came to his blackberry that he had to take. During this time we continued to cry for a little, discussed how disgusted we were with him checking his email, and the news really started sinking in and we got really quiet.  My mind left its blackness, turned back on full force and began racing. 

The feelings you experience when receiving the news that you have Leukemia is something that is very hard to verbalize.  You are assaulted by a barrage of emotions that are both overwhelming and complex.  For me personally I had two predominant emotions that encompasses my entire frame of mind.

Obviously receiving news of this magnitude, causes your the world as you know it to begin collapsing in on you.  Your mind begins to question everything, but most importantly your own mortality is brought into question.  We are all aware of the fact that one day we will all pass away.  But to most of us this is just some nice philosophical quote, that one day we will have to deal with it, but since it is not anytime soon we just push it aside and let the future us deal with that problem.  But when an illness like Leukemia strikes, you are forced to deal with it.  This is what causes the overwhelming emotion that you experience.  No one wants to die, but when it actually becomes a reality, it becomes to much for the mind and body to process, so it allows itself to shut down and become overcome with emotion.  I think the main reason for why the emotional response is so much, is usually you have many years to begin to slowly mentally accept the reality we all know is coming.  In this circumstance all that time you were supposed to have is taken away and you are forced to deal with years of acceptance in a matter of milliseconds.  Our minds are not built to handle that type of overload and will always breakdown when put in a situation like this.
 
The other thing that happens I would have never expected.  You lose all sense of feeling like an adult the moment you receive news of this magnitude.  As an adult we believe we have control over most of the things our lives.  It is this sense of control that gives us our confidence.  Receiving the news of cancer reveals the truth about how you perceive the world, your perception is just an illusion and true fear begins to set it. 

In that instant you are thrust back into feeling like a tiny child in a big scary world, the type that haunts our scariest dreams.  Except in this world, there is a dark and evil monster named cancer that is chasing you, literally trying to kill you.  It isn't like your dreams where you get to wake up before the climatic finish, you know that if it catches you, your days are numbered.  This mental image is the best description of the fear that I experienced when receiving the now infamous news.  Again I won't hazard to guess at Amy's feelings, but I know in that instant we both just wanted our parents.

Dr Hussein came back in to continue our talk.  In hindsight I have a feeling the blackberry call might have been fake, to give us sometime to work through everything, but we will never know.  As he entered we were still insulted by the email incident but so many other bigger emotions had set in I didn't really care about that anymore, I just wanted to know what else he had to say.

He explained that leukemia could be broken into two main categories Chronic and Acute.  Acute being the most dangerous because it acts so quickly it kills within weeks, if not days when not treated.  The deadliness of Acute Leukemia stems from from the fact that it is not localized to one or two areas.  The instant you have it, you have cancer in every cell in your body.  This makes it requires extremely long and intensive treatment programs immediately get started to combat it.

He said based on all my results I had Acute leukemia but that there were two types and he couldn't be sure which one until a bone marrow biopsy had been done. I am not going to get into explaining the two types of Acute Leukemia here but rather will save that for an upcoming Educating the Masses post.

He explained to me that trillium didn't treat my form of cancer as it was too aggressive, so I was being referred to Princess Margaret Hospital.  On Monday February 7, 2010 I would be taken there to have more tests run, specifically the bone marrow biopsy, in order to determine the exact type of Acute Leukemia I had.  As soon as a bed opened up, I would be transferred there to start my treatments. 

We were still pretty emotional from the initial shock of receiving the news of Leukemia and now learning just how aggressive it actually was starting the whole emotional process to begin again.  But Dr Hussein showed a very empathetic side that helped immensely.  He leaned over and told me that, although it is an aggressive disease, it really is a treatable disease.  Basically he was saying "Man up wimp, you got some fighting to do;)"   All joking aside his words did comfort me quite a bit and calmed me down significantly. 

He left us again, this time for good, telling us we could take the time we needed to compose ourselves.  But how do you compose yourself after news like that?  Everything you thought you knew had just been changed forever.  The best thing Amy and I could do was look to each other for support and know we would help each other get through this each step of the way, put your best face on and take your first step into your new reality.  There was still one thing I had to do before we could leave the room and begin this journey.

What I had to do is the hardest thing anyone will ever have to endure.  You always hear a parents worst nightmare is to outlive their children, and now I had to call my mom and tell her that might become a reality.  It took a little time but I finally built up the courage to make the call. 

I could tell she knew something was wrong the moment I said hello.  I tried to make it as quick as possible because I could feel myself disintegrating emotionally and soon wouldn't be able to hold it together.  It is one thing to hear you have Leukemia, but having to tell someone else the news is when it truly becomes a reality which brings right back all those crippling emotions from before. 

I gave her the quick Cole's note version of the events leading up to this point, but when it came to telling her I was just diagnosed with leukemia the words just got caught in my throat, I just couldn't utter the words and make it a reality. She asked me what was wrong, and finally with a wave of tears the words came out.  That was all the talking I was capable of, emotionally I had become overwhelmed again.

She was amazing at this point and just want I needed.  There was no sadness or worry in her reply, it was very simple.  She said where are you?  Al and I are out shopping, we are leaving now, see you soon.  I knew below the surface she was probably experiencing many emotions that I would never see or hear about, but her strength marveled, inspired, and emboldened me for the journey forward I was about  to take.  I felt her strength pass through the phone to me, and when we were finished I was ready to start taking the steps baby steps forward for my road to recovery.

After a little while longer, the nurse came back in and told us we had to vacate the room because they needed it for someone else.  Leaving that room one the most surreal feeling I have ever felt.  As you walk out you are still in a daze from all the news you just received but are trying to keep it to yourself.  But everyone in the bigger room is staring at you knowing what happened.  The puffy eyes and sniffling were probably a dead giveaway but I am sure each of the patients had gone through that room, or one similar to it, and knew exactly what we were feeling.  Still all the eyes staring makes you feel very self conscious.

Waiting for us outside the room was our Angel #2, Colleen Johnson.  She was the nurse practitioner for the Haematology department at Trillium but had spent most of her career in the leukemia wards of Princess Margaret.  Leaving the diagnosis room my desire for details was insatiable.  I knew I needed to know everything so I could mentally formulate a plan of how I would go about attacking this.

She was an absolute wealth of information and explained everything to us about both types of acute leukemia.  Learning about two different diseases is a lot of information to take in, but she was very patient and took her time answering all our questions.  We covered everything you could imagine, fertility and sperm banking, the difference between the two diseases, and just what each treatment would look like.  The gist of it was this, one of the types, AML, had a treatment program of about 6 months plus bone marrow transplant but had much lower numbers of achieving remission.  The other type, ALL, was the marathon of treatments.  It could be up to 3 years of treatment and still require a bone marrow transplant.

By the time we were done I was completely comfortable with both diseases and the treatment protocols each would entail. She left us her blackberry email, because she was going away for the weekend but this way if we had any more questions, we would have someone to ask.   She assured us that my doctor at PMH was extremely accomplished, and I was in excellent hands.  By the end of our conversation I was comfortable enough that I was even starting to try and decide between which form of leukemia I actually wanted ;)

I actually realized the time when we finished with Colleen, and we had been there all day.  It is amazing how time disintegrates when you are preoccupied to this magnitude.  Thankfully my room was finally available so we left both our angels and we were finally delivered to my room.

Let me tell you, rooms in a brand new oncology ward are quite a step up from the beds in the hallway of the emergency ward.  It felt like going from a cave Tom Hanks lived in the movie Castaway to the nicest suite at a Fairmont.  This room had a flat screen TV, my own bathroom, and a door that closed, a bed for Amy so she could get a good nights sleep too.  We couldn't ask for much more.

While we were settling in my parents and sister arrived.  It was perfect because it gave me some company and allowed Amy to go home and shower, get a change of clothes and take care of our little baby, Dora.  I still marvel at the strength Amy had to go home, I am sure it was not easy going to our home alone. 

The visit with my family was really nice and had an upbeat tone.  I still didn't wasn't comfortable talking too much about my disease but we had a secret weapon of hope in our family.  I am not the first person in my family to have leukemia.  My step dad, Al is a 12 year survivor of Acute Lymphoblastic Leukemia.  His presence gave everyone, especially me, hope and strength because we had living proof of what Dr Hussein had said was true, Acute Leukemia was beatable.

My family left after a nice visit but Amy hadn't gotten back yet.  They wanted to stay until she returned but I insisted they get on the road and told them she was on her way.  Truthfully I wanted some time to myself before Amy got back.  I hadn't had a chance to be completely alone with my thoughts all day and I was craving it.  I wanted some time to work through all my emotions.  It was during this time that I actually realized that I was not going home for a minimum of a month, and I was overcome with sadness.  I allowed myself one last and final big cry to let out all the remaining pent up emotions from the day.  Let me tell you it was some real waterworks, but much needed.  It was one of the smartest things I did, because that was the last time I have felt overwhelming emotion towards my disease.  Now only one thing could set off the overwhelming emotion and waterworks, the thought that I wasn't going to see our kitten Dora for at least 4 weeks.  It was difficult because I didn't even get to say goodbye.

Amy returned back to me all refreshed and with some more goodies including our laptops. We spent the the rest of the night just hanging out, comforting each other and relaxing in our new room.  I knew Amy was enjoying her new bed much more than the tiny slice of stretcher she had the night before :)
That marks the end of Diagnosis Day 2, Feb 5 2010 and Part 2 of my story.  I had two days off to hang before Diagnosis Day 3, Monday Feb 7, 2010.

My intention with this part of the story was to not only recount the events that occurred on this life changing day, but to give you an inside pass to everything I felt and thought when finding out I had Leukemia.  I hope you enjoyed the story and love to hear comments! 

TO CONTINUE THE STORY GO TO - A Third and Final Day of Infamy - The Story of my Acute Leukemia Diagnosis Part 3


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