I did some digging and found my Mom's daily journal entries from my days in the hospital. It should be more helpful to put the pieces together now.
When the blood test results came back, my platelets were extremely low. 32 to be exact. A normal person usually has between 120 to 400. This would explain the massive bruise on my thigh that I discussed in my previous post. For those of you that don't know, your platelets are the component of blood that helps in clotting. Something needed to be done about this so I began receiving platelet and plasma transfusions right away.
On August 3rd, my third day in the hospital, bone marrow biopsy results came back and confirmed the original APL diagnosis. Just so you know, a bone marrow biopsy is very painful. I will give you a brief overview of what it is... you drill a large needle into your hip bone in the back, take a syringe and draw out bone marrow from the bone and send it away to the lab for testing. Anyone's knees weak yet? Luckily I was heavily sedated for this procedure...this time.
My third day in the hospital is when my chemo treatments began. I was having 3 different types being given to me at this time. I must have been really sick. The first was Cytarabine, the second was Daunorubicin, the third, All-Trans Retinoic Acid (ATRA).
I will talk about the ATRA. My body and ATRA were not friends. There are many side effects of ATRA: headache, fever, bone pain, nausea and vomiting, rash, mouth sores, itching, sweating, eyesight changes, flu-like symptoms, bleeding problems, infections, pain (bone and joint pain, chest discomfort). The following are less common side effects (occurring in 10-29%) for patients receiving ATRA: heart rate irregularities, poor appetite, weight loss, diarrhea, dizziness, high blood pressure, low blood pressure, insomnia. A very serious side effect is APL differentiation syndrome. This syndrome is a reaction between the drug and the leukemia. This syndrome produces fever, difficulty breathing, weight gain, lung and heart problems. You will come to see in further posts that I had every one of these side effects!
Thursday 23 February 2012
Wednesday 22 February 2012
Cancer, a word hated by so many...
(These next few posts aren't from my memory. My family has had to fill in these gaps for me because at this time I was in the induced coma.)
The doctor had my Mom, Dad and Dale come into the room to give them the results of all the tests. My doctor's name is Dr. Rubinger, he has been my primary oncologist since day one. According to my Mom, his exact words were "your little girl is very, very sick."
The next words were probably the last thing they expected to hear from his mouth. "Jamie has Acute promyelocytic leukemia (APL)**"
I'm sure their exact thoughts were "What the hell, she was always so healthy and athletic!" After they heard the word leukemia the rest of the conversation was a blur. Some mention of treatments, some mention of seriousness blah blah blah... none of that mattered at that point. They knew their daughter and sister had cancer. She wasn't supposed to have that, that's an older person's disease, she's supposed to be so healthy.
Once the initial shock wore off it was time to get some information. How bad was it? What's the next step? Stuff that Dr. Rubinger had mentioned in the first conversation but hadn't yet sunk in at that point. There were so many questions to be answered but the fact was that no one had the answers yet, not even the doctors.
My cancer type was so rare, 1 of 500 cases in the ENTIRE WORLD! I should have bought a lottery ticket...
Since I was such a rare case, the doctors had no idea where to start. What treatments, which type of chemo, what dose, how aggressive? Every oncologist at Cancercare Manitoba knew of my case as they all had been asked if they had any clue where to start. No answers there. Next step is to consult with a larger hospital, the Mayo Clinic. No answers there. Next step, China. That's where my treatment plan came from. (I still need to send a thankyou card to China.)
While all this consulting was going on, my family had to sit back and watch as my condition worsened by the hour. This would be around the 3rd day in the hospital. My treatment needed to start immediately...
**Acute leukemias start suddenly, developing within days or weeks. The number of leukemia cells in the blood can rise very fast and the blood cannot do its job. Acute leukemias get worse quickly and need to be treated right away.
The doctors were unsure how long I had been sick for. I was compensating very well. I had all the classic signs and symptoms for months, years even and never thought twice about it. I was constantly tired, even through my high school years. Most days I couldn't make it through the day without a nap. I just thought I was lazy haha. My family doctor told me I was anemic but didn't do any further tests, only checking my iron levels when I had blood tests. I also had lots of bruising. I just thought they were bad bruises from hockey, and never thought they were of any concern.
I was somewhat suspicious the morning that I was hospitalized. I woke up with a massive bruise on the back of my thigh that was so dark. The evening prior I had got hit there by a frisbee and it left that large of a bruise. I thought that was kind of odd. My suspicions really meant something at that point!**
The doctor had my Mom, Dad and Dale come into the room to give them the results of all the tests. My doctor's name is Dr. Rubinger, he has been my primary oncologist since day one. According to my Mom, his exact words were "your little girl is very, very sick."
The next words were probably the last thing they expected to hear from his mouth. "Jamie has Acute promyelocytic leukemia (APL)**"
I'm sure their exact thoughts were "What the hell, she was always so healthy and athletic!" After they heard the word leukemia the rest of the conversation was a blur. Some mention of treatments, some mention of seriousness blah blah blah... none of that mattered at that point. They knew their daughter and sister had cancer. She wasn't supposed to have that, that's an older person's disease, she's supposed to be so healthy.
Once the initial shock wore off it was time to get some information. How bad was it? What's the next step? Stuff that Dr. Rubinger had mentioned in the first conversation but hadn't yet sunk in at that point. There were so many questions to be answered but the fact was that no one had the answers yet, not even the doctors.
My cancer type was so rare, 1 of 500 cases in the ENTIRE WORLD! I should have bought a lottery ticket...
Since I was such a rare case, the doctors had no idea where to start. What treatments, which type of chemo, what dose, how aggressive? Every oncologist at Cancercare Manitoba knew of my case as they all had been asked if they had any clue where to start. No answers there. Next step is to consult with a larger hospital, the Mayo Clinic. No answers there. Next step, China. That's where my treatment plan came from. (I still need to send a thankyou card to China.)
While all this consulting was going on, my family had to sit back and watch as my condition worsened by the hour. This would be around the 3rd day in the hospital. My treatment needed to start immediately...
**Acute leukemias start suddenly, developing within days or weeks. The number of leukemia cells in the blood can rise very fast and the blood cannot do its job. Acute leukemias get worse quickly and need to be treated right away.
The doctors were unsure how long I had been sick for. I was compensating very well. I had all the classic signs and symptoms for months, years even and never thought twice about it. I was constantly tired, even through my high school years. Most days I couldn't make it through the day without a nap. I just thought I was lazy haha. My family doctor told me I was anemic but didn't do any further tests, only checking my iron levels when I had blood tests. I also had lots of bruising. I just thought they were bad bruises from hockey, and never thought they were of any concern.
I was somewhat suspicious the morning that I was hospitalized. I woke up with a massive bruise on the back of my thigh that was so dark. The evening prior I had got hit there by a frisbee and it left that large of a bruise. I thought that was kind of odd. My suspicions really meant something at that point!**
Friday 10 February 2012
First couple days in the hospital...
When I arrived at HSC at 12:00am on August 1st, I can only imagine it was chaos. Family members wondering what was wrong, doctors wondering where to start.
Originally it was thought that this was a trauma accident from tubing so they started there. I was sent for a CT scan and MRI. The CT results came back, I had 3 internal brain bleeds. This was still thought to be from the "concussion". This is what the doctors thought they needed to treat. My condition continued to deteriorate so they needed to dig deeper to find out what was going on. The doctors ran some blood tests.
I had been in the hospital for about a day at this point. This was when the rumors started to spread like wildfire about what had happened to me. A couple that I heard were that my boat hit another boat on the lake, or that I was hit by a boat when I was in the water. I can't blame anyone though, still no one knew what the hell happened to me. Not even my family...
I was admitted to the intensive care unit at this point, where I continued to deteriorate. That's when the blood test results came back...August 2nd, 2009. A day my family will never forget...
Originally it was thought that this was a trauma accident from tubing so they started there. I was sent for a CT scan and MRI. The CT results came back, I had 3 internal brain bleeds. This was still thought to be from the "concussion". This is what the doctors thought they needed to treat. My condition continued to deteriorate so they needed to dig deeper to find out what was going on. The doctors ran some blood tests.
I had been in the hospital for about a day at this point. This was when the rumors started to spread like wildfire about what had happened to me. A couple that I heard were that my boat hit another boat on the lake, or that I was hit by a boat when I was in the water. I can't blame anyone though, still no one knew what the hell happened to me. Not even my family...
I was admitted to the intensive care unit at this point, where I continued to deteriorate. That's when the blood test results came back...August 2nd, 2009. A day my family will never forget...
Thursday 9 February 2012
Health Sciences Center (HSC)...my new home for 55 days!
While all this was happening, my Mom and her fiance Phil were on their way home from a trip to BC and were in Russell, Manitoba at the time (3 hours from Winnipeg). That's when she says she got the worst phone call of her life. It was from Dale, just as the ambulance was about to leave Ashern hospital. She knew something was wrong as soon as he heard the tone of his voice say "Mom...". Her worst fears were confirmed when he continued to say "It's Jamie, something happened, we don't know what's wrong but it's bad, I'm scared Mom."
It's crazy how adrenaline gets you through these kinds of situations. She checked to make sure her seatbelt was secure and turned to Phil and said "we're going to Winnipeg, and we're getting there fast." Did I mention that it was a rain storm at the time? Or that the curvey road full of valleys and deer is probably one of the most dangerous highways in Manitoba? Needless to say, my Mom drove the three hour drive in two hours!
The drive from Ashern hospital to HSC should normally take 2 and a half hours, the ambulance got me there in 1 hour and 45 min. Either they were really sick of fighting with me, or I was in bad shape.
Dale, Ashley and my Dad were following behind the ambulance. I was quite unstable at this time, so a Doctor rode in the ambulance along with the paramedics. I am uncertain if it was the same one I had punched.
The ambulance pulled into HSC at the same time my Mom pulled in, talk about a coincidence. The doctor had induced me into a coma during the ambulance ride as my condition was so unstable. Still at this point no one knew what was truly wrong with me yet...
It's crazy how adrenaline gets you through these kinds of situations. She checked to make sure her seatbelt was secure and turned to Phil and said "we're going to Winnipeg, and we're getting there fast." Did I mention that it was a rain storm at the time? Or that the curvey road full of valleys and deer is probably one of the most dangerous highways in Manitoba? Needless to say, my Mom drove the three hour drive in two hours!
The drive from Ashern hospital to HSC should normally take 2 and a half hours, the ambulance got me there in 1 hour and 45 min. Either they were really sick of fighting with me, or I was in bad shape.
Dale, Ashley and my Dad were following behind the ambulance. I was quite unstable at this time, so a Doctor rode in the ambulance along with the paramedics. I am uncertain if it was the same one I had punched.
The ambulance pulled into HSC at the same time my Mom pulled in, talk about a coincidence. The doctor had induced me into a coma during the ambulance ride as my condition was so unstable. Still at this point no one knew what was truly wrong with me yet...
Friday 3 February 2012
The journey to the hospital...
So after I passed out in the boat, Dale and everyone else in the boat realized there was definitely something wrong. The boat raced back to the cabin where Dale's friend Bryce carried me into the cabin and laid me on my bed. Dale stayed with me and tried to keep me awake (everyone's initial thought was that I had a concussion.) He was asking me all the classic questions, "how many fingers?", "follow my finger", "can you feel me touching your foot?", "do you know where you are?". I was apparently answering appropriately until I suddenly went completely unconscious and was unarousable. Dale knew this was a serious problem now and immediately called 911. The nearest hospital was about 30 min away and was a small hospital so Dale's initial thought was to load me in his truck and drive me himself rather than to wait for the ambulance. The ambulance dispatcher cautioned against this and much to Dale's disapproval he had to sit there and wait while he watched his sister lay there unconscious and throw up in the back of his truck.
I can't imagine how scary this was for everyone there! I still get chills thinking about it.
I'm sure it felt like an eternity, but the ambulance finally got there, loaded me up to take to the nearest hospital.
Luckily my Dad arrived back to the cabin from another boat that was out on the water just in time to see the doors of the ambulance closing, only to be told that it was his little girl. I can't even imagine what was running through his mind. "What happened? Is she okay? How bad is it?"
Ashley rode in the ambulance with me to answer the paramedic's questions about what happened as she was with me all day. Dale and my Dad were going to follow behind the ambulance in Dale's truck. No one knew exactly what was wrong yet.
I was taken to Ashern hospital to be stabilized. After I fought the paramedics all the way to the hospital I'm sure they were more than happy to hand me off to the nurses. The fighting didn't stop there. I didn't hold back on the nurses either. In the treatment area of the emergency room it looked like a vicious cat fight, there were nurses being pushed, curtains flying. Now when we talk about it, Dale and my Dad say it was a pretty funny thing to watch. I'm sure it wasn't at the time, however.
You are all probably wondering why I was in so much pain and fighting like a madwoman. My intercranial (inside my skull) pressure was through the roof. A normal pressure is between 15-18mmHg. Mine was over 65! I can't even begin to describe the pain. Your head basically feels like it is going to explode. Any touch to your face feels like that is what is going to be the cause of the explosion. Luckily your body has a pretty cool defense mechanism which makes you forget that type of pain. I will get into that in later posts.
Medically when you have a brain injury, the intercranial pressure causes you to be combative. These were certainly the symptoms that I was exhibiting to all of my unlucky victims.
Where was I... oh ya, fighting. Like I had mentioned, I didn't hold back on who was my next victim. After the nurses, it was the doctor's turn. (they finally realized it would be a good idea to restrain me. Although, they only restrained my right hand because in the paramedic's assessment they found that I had no feeling or movement in my left side. Another bad mistake haha.) The doctor started his assessment, and when it came time to look in my ears with that cool light it was his turn to become the victim. He put it in my ear, only to get a left hook in the face by me! (sorry Doc) I think I overstayed my welcome at Ashern hospital, because they did enough to stabilize me to put me back into the ambulance to move on to the next hospital. Health Sciences Centre here I come... (luckily for the paramedics I was heavily sedated this time.)
I can't imagine how scary this was for everyone there! I still get chills thinking about it.
I'm sure it felt like an eternity, but the ambulance finally got there, loaded me up to take to the nearest hospital.
Luckily my Dad arrived back to the cabin from another boat that was out on the water just in time to see the doors of the ambulance closing, only to be told that it was his little girl. I can't even imagine what was running through his mind. "What happened? Is she okay? How bad is it?"
Ashley rode in the ambulance with me to answer the paramedic's questions about what happened as she was with me all day. Dale and my Dad were going to follow behind the ambulance in Dale's truck. No one knew exactly what was wrong yet.
I was taken to Ashern hospital to be stabilized. After I fought the paramedics all the way to the hospital I'm sure they were more than happy to hand me off to the nurses. The fighting didn't stop there. I didn't hold back on the nurses either. In the treatment area of the emergency room it looked like a vicious cat fight, there were nurses being pushed, curtains flying. Now when we talk about it, Dale and my Dad say it was a pretty funny thing to watch. I'm sure it wasn't at the time, however.
You are all probably wondering why I was in so much pain and fighting like a madwoman. My intercranial (inside my skull) pressure was through the roof. A normal pressure is between 15-18mmHg. Mine was over 65! I can't even begin to describe the pain. Your head basically feels like it is going to explode. Any touch to your face feels like that is what is going to be the cause of the explosion. Luckily your body has a pretty cool defense mechanism which makes you forget that type of pain. I will get into that in later posts.
Medically when you have a brain injury, the intercranial pressure causes you to be combative. These were certainly the symptoms that I was exhibiting to all of my unlucky victims.
Where was I... oh ya, fighting. Like I had mentioned, I didn't hold back on who was my next victim. After the nurses, it was the doctor's turn. (they finally realized it would be a good idea to restrain me. Although, they only restrained my right hand because in the paramedic's assessment they found that I had no feeling or movement in my left side. Another bad mistake haha.) The doctor started his assessment, and when it came time to look in my ears with that cool light it was his turn to become the victim. He put it in my ear, only to get a left hook in the face by me! (sorry Doc) I think I overstayed my welcome at Ashern hospital, because they did enough to stabilize me to put me back into the ambulance to move on to the next hospital. Health Sciences Centre here I come... (luckily for the paramedics I was heavily sedated this time.)
How it all started...
It was a beautiful July evening at my family cabin in Steeprock. In fact it was the July long weekend. There was an annual slo-pitch tournament being held there. Our team was looking to redeem ourselves from the previous year (0 wins...). We thought we had a pretty good team and were looking to at least win one game this time around. Everyone was looking forward to it. We spent the day having our own little mini practice, having a couple drinks, enjoying the day on the beach. It was around 6pm and we decided to go out in the boat for a few tube rides. Everything was fine and uneventful...
I believe I was the 3rd tube ride (there were 5 or 6 of us in the boat). I was on the tube with my sister in law Ashley. We were having a blast hitting waves, trying to hold on for dear life. That's when something internally must have been set off.
According to Ashley I just let go of the tube and slid off, didn't hit a big wave or anything. When the boat came back around for me to get back on the tube I said to my brother that I was tired and wanted to get back in the boat. I got myself back into the boat under my own strength and sat down in the chair. All I remember is having a bad headache and saying I was tired. I was told a few months later that I tried to stand up to take off my lifejacket and fell backwards (I have no memory of that). I was sitting in the seat in the boat holding my head and feeling that pins and needles feeling in my fingers and toes on my left side. I remember saying "I think I'm going to be sick" and my brother's reply "not in the boat!". This would be my last memory of the incident...
I believe I was the 3rd tube ride (there were 5 or 6 of us in the boat). I was on the tube with my sister in law Ashley. We were having a blast hitting waves, trying to hold on for dear life. That's when something internally must have been set off.
According to Ashley I just let go of the tube and slid off, didn't hit a big wave or anything. When the boat came back around for me to get back on the tube I said to my brother that I was tired and wanted to get back in the boat. I got myself back into the boat under my own strength and sat down in the chair. All I remember is having a bad headache and saying I was tired. I was told a few months later that I tried to stand up to take off my lifejacket and fell backwards (I have no memory of that). I was sitting in the seat in the boat holding my head and feeling that pins and needles feeling in my fingers and toes on my left side. I remember saying "I think I'm going to be sick" and my brother's reply "not in the boat!". This would be my last memory of the incident...
This is the lake where my life changed.......
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