Moving forward...

    At this point (August 12th,2009) I was no longer in the ICU. The doctors felt I was strong enough once the ventilator came out to move me up to D6 (the cancer floor in the hospital.) The idea was that I would continue my treatments there and continue to get stronger and eventually be discharged to go home.
    If you ever have to have an extended stay in Health Sciences Center I suggest you try and sneak up to D6 and spend your time there. The nurses are amazing!!! They are so positive and upbeat all the time. It takes a special type of person to have an attitude like that in an environment where so many negative things happen.
    The numbers on my white board this particular morning were as follows: platelets 41, hemoglobin 87, and white blood cells 0.4. My numbers were dropping as a result of all the chemo being pumped through my body. With my white blood cells being so low my immune system was in a very vulnerable state so my visits were limited exclusively to immediate family, although the visitors continued to show up only to be turned away.
    The medications and chemo treatments were taking a toll on my body. On this particular day I had an onset of very bad diarrhea (I'm not ashamed to talk about it...you lose all shame when you're in the hospital for that long.) Since my bowel issues were so sudden and came without warning I wasn't able to make it to the toilet in my room. After a few bed/gown changes it was decided that I would have a commode brought into my room. A commode is a toilet on wheels that looks like a chair.

This is a deluxe commode, mine was not that glamorous but you get the idea.

    I spent about half of the day on the commode. Not such an easy task when you have little warning and have to manouevre off the bed with a catheter in place, IV tubes, IV pole, tube in my nose and a wobbly leg as a result of the stroke. Looking back now I would have loved to be a fly on the wall to watch the pure chaos that took place in those tense moments! I eventually gave up and just sat on the commode to watch tv and visit with my family. They understood.

    I made an agreement with the doctors and nurses that if I attempted to walk and move around a few times a day that the evil Heparin shots every morning would eventually come to an end. I liked this agreement, I felt like I was finally in control of something for the first time since being admitted to the hospital.

    So on a bright note my foot brace and walker arrived on this day. Time to get moving!!! With the assistance of my walker and 2 nurses I managed to walk the length of the hall and back to my room. There was not a dry eye on the floor. Every nurse on the floor was standing in the hallway crying and smiling at the same time. My Mom was no exception to this either. This would be the first time I smiled in 12 days!! I was so proud of myself. I felt like I finally made some progress and the fact that I may no longer have to get the daily Heparin shot contributed to this smile. I couldn't wait to get back into my bed, I was exhausted. I also could not wait to tell my Dad and brother who had stepped out for a little while. I napped for a couple hours and when I awoke Dad and Dale were sitting there anxiously awaiting the news I had for them.

    This was a huge day for me as a couple days before this I secretly whispered to my Mom that I was afraid I would never walk or play hockey again. You take the little things for granted, a simple walk down the hallway was the most amazing thing that happened to me in 12 days!

Morning Routines...

    It is now August 8th. Every morning at 6am a nurse would come in and draw blood from my PICC line. It became a routine that I got used to. I would know to be sleeping on my right side when the nurse came in, I'd pull out my left arm from the blanket, didn't change my sleeping position, she took the blood and left, I tucked my arm back in and went back to sleep. What is a PICC line you are probably wondering? A PICC line is a peripherally inserted central catheter. Mine was inserted in my right arm. It is basically a tube that runs from my arm, through the vein and into my heart. It is what was used to draw blood, give me chemo, and other medications. It is just a simple way of doing all those things without having to stick me with a needle every time. You may be wondering if it hurts or is uncomfortable. The answer is no, I barely felt it when it was in. It was annoying because you cannot get it wet. I was unconscious when it was inserted so I couldn't tell you if it hurt or not. 
    The nurses would come into my room every morning around 8:30 and write statistics on the huge white board in front of my bed. What they were writing were the numbers of the different components of my blood that they drew at 6am, my platelets (clotting), hemoglobin (oxygen carrier), and white blood cells (immune system). The normal values in a healthy person is as follows: platelets 150 to 400, hemoglobin 120 to 160, and white blood cells 4 to 11.
    It was another highlight of my day to see how my body was reacting to all the chemo, seeing if it was doing his job. On this particular day these were my numbers... platelets 39, hemoglobin 109, white blood cells 2.9. The chemo is starting to take a toll on my body, dropping all my blood levels to below normal. This is all normal and to be expected since I was having such aggressive chemo treatments.
    The next part of my morning routine was not a fun one. It was a Heparin needle in my belly (this is to prevent clotting since I was laying in bed all day.) It would come at the same time as my breakfast at 9am. Since I was tube fed at this point that was just warmed up Boost drink through my nose. The first time I didn't know what to expect. I thought "Oh just a little needle in my stomach, I can handle that, I'm a tough hockey player. I had a needle drilled into my hip bone and bone marrow taken out, this will be nothing." Well was I ever wrong! I'm pretty sure I yelled every curse word in the English language, maybe even a little French. Needless to say I came to dread every morning at 9am. I didn't even want to have my breakfast since I knew what was coming right after that. It wasn't even an enjoyable breakfast, warm milk like substance running through a tube in your nose.
    After breakfast and Heparin shot the next routine was to sit and wait for the Doctors to make their rounds and tell us the plan for the day. They would usually be there between 9:15 and 10am. Some mornings they would come and interrupt my Boost breakfast, further delaying the Heparin shot and further increasing my anxiety. If you think it is intimidating to talk to one doctor, picture 3 to 5 doctors standing around your bed drilling you with questions.
    On this day we were waiting for the Doctors to come in and make the decision whether I needed another platelet transfusion before trying another round of ATRA chemo. That was the plan, 2 platelet transfusions folllowed by another try of the ATRA. The doctors were hoping that my body was stronger now and could handle the treatment this time around.

These pictures give you a better idea what a PICC line is!

Hospital days...

    In my last post I was put on a ventilator to give my lungs and body a rest. This was supposed to be for 24 hours, however the fluid has remained on my lungs so they have decided to keep me on for one more night so I could rest more easily. My brother, Dale would stay at the hospital with me this night as all I was doing was sleeping and sedated enough to not act like a little brat. Because of the ventilator tube in my throat I am unable to talk but can respond to questions by squeezing hands, 1 squeeze yes, 2 means no.
    I actually made it through the previous night without acting up! Little did everyone know that I was just plotting my next stunt...
    The date is now August 7th, 2009. The doctors have decided that the ventilator has given my body enough of a rest since my vitals are much stronger and it may be time for it to come out!
    Time for my next stunt, although I was unable to talk I could hear everything. I heard that the ventilator was going to come out. Well not exactly, but that's all I heard. I decided to help the doctors and nurses out. Since my hands were no longer restrained because I had behaved the prior day and night, I grabbed that tube and was ready to pull it out on my own.  Maybe not such a good idea... the nurse, Mom and Dale rushed to my bedside and grabbed my hands. It took all three of them to unpry my fingers... Damn so close!
    I was mistaken I guess, I thought the ventilator was going to come out right away. Nope, wrong. The plan was to gradually change the level of support I was receiving. So it was time to prove them wrong. I was switched to the lowest level of support and breathing well on my own.
    I guess I needed to eat somehow, and since they had a stupid tube down my throat the plan was to insert a feeding tube through my nose. Great!! (sense the sarcasm) Time to act up again...
    While the nurse was inserting the feeding tube through my nose she had the help of a second nurse to hold my hands. She didn't know who she was dealing with, as she only had a loose grip on my hands. I broke free of her hold and began yanking out all of my IV tubes. The nurse had to pry off one finger at a time and then reinsert the ones that I had pulled out. After a stern scolding and warning that the restraints would come back I decided to behave and be a good girl. (I wonder if I was thinking that if I was a bad enough patient if they would just get fed up with me and send me home.)
    The ventilator was finally removed after only a couple hours. I was breathing well enough on my own and my vitals were stable. I was alert and sitting upright in my bed answering one word answers to the doctor's questions. 
    Dale had briefly left the hospital to go pick up his girlfriend at the time, Ashley (now his wife). Even though he had spent the prior evening with me and had been at the hospital along with my Mom, and Dad everyday since I was admitted, I forgot who he was when he and Ashley returned. I asked politely that he leave my room since I did not know who this strange man was. Ashley was allowed to stay, even though this was probably the 3rd or 4th time I had met her in my life. I can only imagine how this crushed Dale's spirits. He had been at the hospital everyday. I'm sure the thought ran through his mind that his only sister may not ever remember who he was. Dale was crushed and left the room and let Ashley have her visit. (I'm very sorry Dale, but thankyou for respecting my wishes and leaving.)
    That night my Mom and Dad tried everything to refresh my memory on who Dale was. Nothing they said worked. It wasn't until they showed me a picture of Dale tubing behind the boat that I remembered. I loudly screamed "DALE!" It worked. I'm sure Dale was relieved to get the phone call that evening telling him that I remembed him.
   An update on my medical status... I was still receiving chemo treatments and they began to wear down on my immune system and body. At this point my white blood cells, that are responsible for your immune system were at 4.2 (they can go as low as 0.50 before it is cause for alarm.) 4.2 is low and the risk for any type of infection is increased. My visits were limited to only immediate family, although many people were trying to visit only to be turned away.
    The nurses were delivering many random gifts, stuffed animals, and cards. A couple times we had no idea who the gift was from, the nurse would just deliver a random gift. It was like having a secret admirer! I loved all the surprises! The nurses were amazed with how popular I was. I think it's just because I'm so loveable! haha jk :)

**I would like to personally thank everyone who came to visit and was turned away! I would also like to thank everyone for the wonderful gifts and well wishes! That was the highlight of my day everyday, reading all the cards and receiving all the gifts!**

Complications...

    So in my last post I said that I had every one of the complications that I listed from my treatments, the ATRA in particular. I will explain some of these.

    We will start with the nausea and vomiting... I'm not sure what I was eating or drinking at this point but it had to be coming from somewhere. I could not keep anything down. My body did not like all the chemicals being pumped into it. It was hard not being able to get up to go to the washroom to be sick. Instead I had to lay in bed and get sick into what the nurses call "kidney basins." I will call them useless basins because they served no purpose, they were so small and held hardly anything. I'm sure you can figure out the end result... That's my little rant for the day. Looking back now I would take the nausea and vomiting anyday over what other complications were to come! 

                                                                  Useless basin
 
    In addition to the nausea and vomiting, I was having hot flashes. I am NOT looking forward to menopause (hopefully they have created some kind of cure for hot flashes when my time comes for that!). I just could not find a comfortable temperature. I was having hot flashes with a fever of 103F at the same time. My room was an igloo in order for me to be comfortable and not complain. I feel sorry for my family that had to put up with that in order to be with me.

    Now to the more serious complications. The date is now August 5, 2009, 5 days since being admitted to the hospital. 
    I was having severe headaches. If you've ever had a migraine, multiply that by 10. I couldn't be touched without screaming in pain. Makes it difficult to run tests on someone that fights and screams anytime you touch them. I had no remorse towards my family either. They would try rubbing my hand or head to comfort me and I would respond with a punch, hit, pinch, anything I could. And the restraints come back...... (I'm a terrible patient.)
    My doctors noticed that I was having an increased difficulty breathing. I had fluid on my lungs which caused a lung injury. They concluded this was a side effect of the ATRA treatments and it was decided that the ATRA would stop for now...
    The doctors also decided to put me on a ventilator to help my body out and give it a rest for 24 hours and further evaluate. As you can imagine I was not a happy camper about this. I couldn't handle being touched in any way yet they were going to shove a tube down my throat. While the doctor's were preparing to do this I tried to sit up, looked at my Mom, and chanted "I WANT TO GO HOME," hitting her with every word I said (sorry Mom.) I feel like I've been apologizing for a lot of things haha. The doctor's further sedated me to let my body rest. Even though I was very heavily sedated I was still trying to sit up and pull my hands from the restraints. I must be very strong or very stubborn! I think a combination of both got me through this illness. :)
    On this particular night my fever remained and the temperature in my room stayed very cold. My Mom slept in a jacket, touque and mittens haha. Through the night my blood pressure was very high and my heart rate was very low.

**Three separate CT scans had been done in the past 3 days to evaluate my brain bleeds. These would show that the bleeds were no better or worse.**

Treatments begin...

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!

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!**

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...