Hello Again!...Sorry for the Delay!

   I would like to start by apologizing to everyone for the delay on writing my newest post! Life gets busy when you are living each day to the fullest. I will do my best to update and continue my story as soon as possible. But today I will write what will likely be my most humorous post to ease back into it! I will be writing the promised hallucination stories post!
   
     As I had mentioned in previous posts, I do not remember much of my hospital stay. But what I do remember crystal clear is my hallucinations that were a side effect of the high doses of morphine that I was receiving to tolerate pain. Every single person that I have told these to has found them hilarious so I hope I can at least give my readers a smile!

    I had been induced into a coma for 38 days on account of my condition being so unstable. In those days my body may not have been active, but my brain certainly was!! My family was there everyday by my side, holding my hand, rubbing my head, talking to me, encouraging me. I do not remember them being there but I know they were. This particular hallucination impacted my brother, Dale the most. Something in my mind convinced me that Dale was a serial killer and nobody but me knew. I had vivid dreams of him going on killing sprees and me being the only one that knew his secret. I know this is completely out of character for the sweet guy he is. The guy that fanned me with a piece of cardboard for an hour because I was so hot and not allowed to have a fan in my hospital room. In my mind I was convinced however that this was true. Dale came to visit me one morning, excited to see me as always as he had everyday. I was not so excited to see him however. He came to the hospital with his girlfriend at the time Ashley, who is now his wife. I had only met Ash two times prior to me being hospitalized. I really didn't know her. I knew I liked her but didn't know her personally yet. As soon as Dale and Ashley walked into my hospital room, I stopped mid sentence and looked at Dale. I said to the nurse that he needed to get out, Ashley was welcome to stay but he needed to leave. Dale thought this was a joke. He thought my sarcastic sense of humor was coming back. When he noticed the true anger and seriousness when I repeated that he needed to leave he was obviously upset. He had been at my bedside every day since I was admitted to the hospital. Why now was I angry at him and for what reason? The nurse had to ask him to leave the room as I was becoming visibly agitated. This was heartbreaking for Dale... and he had no idea why. Dale came back to the hospital the next day to try his luck again to find out that I had gotten over whatever upset me with him the previous day! I never told anyone what upset me with him that day. It wasn't until a few weeks later that I remembered what happened and decided to share my secret with everyone else. We all had a laugh over it...sorry Dale!

    Did you know gerbils are fast? I found that out one day when I was watching TV in my hospital room. I was watching one of three things, Ellen, The Price is Right or the Food Network. That was the only thing that was allowed to be on in my room. I had strict rules! I was laying in bed watching quietly when all of a sudden I sat up abruptly and started swatting at the end of my bed. My Mom looked up calmly from the book she was reading and this is the conversation that followed:
Mom: "What the hell are you doing?"
Me: "There's a gerbil at the end of my bed!"
Mom: "Ohhhh, did you get him??"
Me: "No those buggers are fast!"
Mom: "Maybe next time."

  My Mom had spent enough time with me up to this point to know better than to disagree with me over my hallucinations. I believed them to be true so I felt everyone else should too. It was best to agree and play along than get in an argument, or have my fingernails dug into your arm. My hospital room, my rules!

    Have any of you met the President of the United States?  I did. In fact, I was the nanny for his two children. This hallucination went on for about a week. I was excited to tell my visitors about my latest adventure with the President and his family. We did all sorts of things, camping, swimming, baseball games at Wrigley Field which I believed was in Washington. It was so cool, we had our own private suite at the ballpark! I was even convinced that a pair of pajama pants that I wore while in the hospital were a pair that I had borrowed from my good buddy Barack. Here is another conversation that happened between my Mom and I:
 I was having a afternoon nap and woke up in a panic.
Mom: "What's wrong Jamie?"
Me: "I left my favorite perfume at the White House!"
Mom: "Don't worry I had it taken care of, it got mailed here and it's sitting on your dresser at home now."
Me: "Okay good, that stuff is expensive."

  I don't know how my Mom managed to keep a straight face while having a conversation like that with me. I am smiling while I am typing this thinking about how ridiculous it must have sounded.

    Have anyone of you starred in a movie? I certainly did! This is another conversation that occurred between my Mom and I one day when I was just waking up from a nap. She noticed me waking up so came to the side of my bed to ask how I was feeling.
Me:"Get out of the way."
 Mom looks around confused trying to figure out what she is in the way of since the TV is shut off
Mom:"What's wrong?"
Me: "You're in my shot."
Mom: "Huh?"
Me: "I'm filming a movie scene and you're in my shot."
Mom: "Oh, I'm sorry. Let me know when your scene is over and you can have lunch."

      It still boggles my mind that my brain could forget something horrific happening to my body and all the pain I went through but choose to remember something as silly as the previous stories I told you! I am glad I remember them though as it is something to look back on and have a laugh over. I hope I gave my readers a laugh as well!




   
   

Signs of progress...

    The date now is August 22nd, 2009. I was continuing to get stronger one day at a time. The previous night I got maybe 45 minutes of sleep, my Mom got the same. I was very restless. The high amounts of morphine that I was on caused me to be very delirious. I was communicating, not appropriately however. I was not aware of my surroundings. I was making up some very interesting stories! It was decided by the doctors that I would slowly be weaned off the morphine.
    I do not remember very much about the medical aspect of my hospital stay, but my hallucinations are clear as day to me! They seemed so real. I find it fascinating how the mind works. It was able to block out the excruciating pain and let me forget that, but for some reason it wanted me to remember my hallucinations. I am very glad I did though, they are quite hilarious. So funny that they deserve a separate post of their own!
    The pressure in my head and headaches that I had been experiencing continue to come and go throughout the day.
    Dr.Rubinger, the first oncologist that saw me, and still sees me to this day came up to my hospital room to check on me. He said that despite all the complications I have experienced I am showing signs of progress in regards to the cancer. The ups and downs were to be expected in a case like mine. This was good news for my family. He continued to say that I am still a very sick person and not out of the woods yet, but he is pleased with my progress.
    My pneumonia was starting to clear up. I was coughing up a lot of material that was on my lungs. I won't describe it because it was quite gross! I was breathing well on my own without the respirator (I told you I was going to prove a point somehow.)
    A physiotherapist also came to visit me early in the afternoon. He instructed me to get up and sit on the side of my bed and do a few simple exercises. He gave me his hand to help me sit up. I pushed it away, I was going to prove another point! Instead of sitting on the side of my bed I tried to get up and walk. "Whoaaaa, one step at a time" he said to me. I propped myself up with one arm and did the exercises. He said that I still have a great deal of strength considering the situation I was in. This was more good news to my family! After he left my room I went back to sleep for most of the day.
    On August 23rd, my morning blood test results came back. My white cell numbers were up quite a bit; 1.4! That is quite an increase from the last time, 0.5. My platelets were 93, the highest level they had been since I was admitted to the hospital! My respirations were strong without the respirator and my pneumonia was almost cleared up. This was very good news and the doctors agreed and deemed me stable enough to be moved back up to D6 (the floor with the amazing nurses.) The nurses from ICU all stopped by my room to say their goodbyes to me. As I was being wheeled out in the wheelchair I whispered that I would NOT be coming back.
   
    When I returned to D6, it was like a homecoming parade. I had a big smile on my face. The nurses stood in the hall and clapped as I was wheeled into my room. My family followed behind me with a armfuls of stuffed animals, posters and stacks of cards. I was put back into room 9, the same one I was in previously. One of the nurses was so excited she was in tears. She whispered privately to my family that she was afraid I wasn't going to make it and that it had bothered her so much.
    Even though my bloodwork was showing signs of improvement and my vitals were stable I was complaining of hurting all over my body. Even in my pinkies! This was a side effect of all the chemo and ATRA. I was especially complaining of neck pain. I was having difficulty holding my neck up. The doctors and nurses said this was probably due to my positioning in bed for so long. This was treated with Tylenol 3's, ice and neck support.
    The physiotherapist came late in the afternoon. I told him I was too tired from all the excitement of the day and promised to exercise later.
    As Dr.Rubinger warned the previous day, I was not out of the woods yet. My clotting factor was proving to be an issue. Too high and it can cause more strokes, too low and it can cause excessive bleeding. The doctors were having difficulty stabilizing it and this was of great concern because of the bleeds in my head.
   

Team Jamie...

    Can anyone of you say that you know 1400 people? I didn't think I could either before I got sick. I will explain this statement later on in this post...
    In times of need it blows my mind how people can rally together for a single purpose. That is exactly what Team Jamie was. My former hockey coach and long time friend Ralph Nespor came up with the idea. Everyone wanted to help in some way, but there was really nothing to be done. I was only allowed to have my immediate family as visitors, so for everyone else it was as if their hands were tied. No one knew what was really going on with me. The only thing that they had heard were rumors or what they had heard from word of mouth. It was like that game of telephone that you play as a kid. The story was bound to change somewhere. Team Jamie eliminated this problem.
    My Mom would take as good of notes as she could of what was going on with me, forward that in an email to her fiance Phil who would then write it into a more formal update to email out to the ever growing "Team Jamie." The Team started as just family members and close friends but as more people heard about it, more were added to the email list. Phil was getting more and more requests by the day of people that wanted to be included in the updates. His email list was up to about 30 or so people who would then forward that on to more people. I'm very popular!! 
    On a busy day at the hospital Mom wasn't always able to get her information to Phil in sufficient time. If the Team Jamie email wasn't sent out on that day, people would automatically start to assume that something drastic had happened. I don't blame them. It became another routine. People have told me that they would be sitting by their computers constantly refreshing their inbox waiting for the daily update. Even on days where there was no change in my condition an email needed to be sent out so people wouldn't panic.
    This system eliminated a lot of the phone calls my family was receiving as well. This allowed them to keep their focus on me. Team Jamie was a very good idea! I got all the attention haha just kidding :).
    In times like these all people want to do is help in any way they can. That's where the idea for "Positive Moment for Jamie" came from. There was nothing to be done, so in the update emails everyone was asked to have a positive thought, prayer or anything for me every night at 9pm. I don't know what everyone was thinking but it obviously worked! I am still here stronger than ever telling my story.
    In addition to the positive thoughts, prayers, gifts, cards and emails, Ralph went ahead and had bracelets made up for me. They were yellow and said JAMIE'S TEAM on one side and BELIEVE on the other side. He started with 100 of them for my family and friends. He must have underestimated how popular I was. When people saw these they wanted one immediately. 100 bracelets ran out in a hurry. He had 500 more made, also gone in a hurry. In total 1400 were made and there are none left. Thats where my question comes from. I did not know I knew 1400 people. They were everywhere. Those bracelets made their travels. They were in Winnipeg, Stonewall, Wisconsin, Minnesota, Switzerland, Egypt to name a few places. All the sports teams from the university I attended (University of Wisconsin-Superior) were wearing one.
     I woke up one day with a yellow bracelet on my wrist beside my hospital bracelet. I thought I was hallucinating. It had my name on it, I thought to myself what a coincidence, someone else named Jamie is in need too. That's when my family explained it to me. I still thought I was hallucinating. I didn't believe them, I wasn't that popular. It finally clicked when I saw all the nurses and doctors wearing the same ones. Holy shit this really is for me! Who do I thank? There were too many people doing little things for me behind the scenes that I never thanked so I will use this opportunity to do it. THANKYOU EVERYONE!!!
    The bracelets were a non-profit thing. If you really wanted to make a donation my family requested that you donate the money to CancerCare or Canadian Blood Services, two organizations that were responsible for saving my life.
    There were also blood drives being organized in my honor. One in Stonewall and one in Wisconsin at the university. If you have ever heard the ads on the radio or TV stating that leukemia patients require 8 units of blood per week it is no word of a lie! I can't even begin to count the amount of blood and platelet transfusions I received. The need for it is so great and I am living proof of that! If I could make one request it is that each and everyone of you at least considers donating blood or signing up to be on the bone marrow registry. It's true that it saves lives. I owe my life to the generosity of complete strangers!

Team Jamie bracelets

Team Jamie makes a stop in Egypt

...And Mexico

...And at a game at the University of Wisconsin-Superior

My former university team retired my jersey for the season

And played a game dedicated to breast cancer and leukemia awareness

I like this pic of my little mini afro :)

   
  
   

Bring it on Cancer...

    After the initial shock of the new diagnosis had worn off it was time for my family and I to move on and put on our fighting faces. I do not like to lose at anything and this was certainly not the battle that I was willing to lose. Bring it on Cancer!
    I was still on the respirator, but the doctors decided it would be a good idea to slowly remove it since it increases the risk of infection. That would be the last thing my body needed to add to the growing list of problems. The doctors warned that this may cause distress to me which would increase my heart rate which would then increase the pressure inside my head. This was a risk they were willing to take though, as one more infection could potentially be lethal to me. My vitals were strong enough so it was time for it to come out.
    On August 21st, 2009 I was taken off the respirator again, hopefully this was the last time! I was watched 24 hours a day by a respiratory technician for the slightest sign of distress. If this were to happen I would be put right back on it. I believe subconsciously I just wanted to prove something. The respirator was removed and I had no difficulties. A down side to having a tube put in and pulled out of my throat so many times was that my vocal cords were slightly damaged. If I wanted to communicate it would be through hand signals or whispers. Let me tell you it is very frustrating when the only sound you can make is a whisper. There were many times that I got so frustrated and my family members got the short end of the stick. I think my Mom, Dad and Dale all had my fingernails stuck into their hand or forearm at some point!
    You all may be wondering if there are any positives at this point. They were a few. Believe me my family would take any shred of good news the doctors had. Like I said my vitals were strong, first positive. The blood test taken on this particular day showed no new immature white blood cells (aka cancer cells) located in any of my organs, second positive. My first round of chemo for the APL was finished, third positive. Even though I was finished the chemo for the first type of cancer I was still receiving a Vitamin A derivative that causes immature white blood cells to mature into normal white cells. My body was accepting this treatment without any complications, another positive.
    Since my body was dealing with so many other complications, the doctors felt that my chemo treatments for the brain leukemia (AML) would have to be held off until some of the other complications improved. They did not want to put too much stress on my body since I was already in a very delicate state.
    The last MRI that I had done showed that the new brain bleed, which we now know is a stroke caused from the ATRA, occurred very close to the portion of my brain that controls vision and speech. The doctors did not believe that I would have any long term effects once the bleed clears itself up. I'm sure my family was crossing their fingers!
    The doctors decided to suspend any thoughts of doing anymore bone marrow biopsies at this point as I was too unstable. They feel that possibly by my 40th day of treatment they will try again. As for the treatment for the AML (brain cancer), I was in the second stage which is the consolidation stage. If the other life threatening complications can be stabilized I would undergo an 8 week regime that consisted of chemo being administered intrathecally (through the lumbar punctures.)  Oh great, 8 weeks of lumbar punctures, something to look forward to...

    Everyone was wondering not only how I was doing, but how my family was holding up. My Mom was spending every moment by my side. I was beginning to get sick of her!! Just kidding of course. She developed a routine at the hospital. Rushing out for a 5 minute shower every morning around 5:30am while I slept, grabbed a tea from the nurses station and back to her chair by 6am in time for the nurse to come in and draw my blood. She slept in a chair beside my bedside most nights. She had to fight to get that chair! Initially the nurses did not want any family members staying the night with me. Wrong thing to say to her, she refused and said she would sleep on the floor if she had to. They eventually brought her a chair haha. Dad and Dale would take turns spending the odd night with me to give her a break to go home, even though in her mind she was wanting to be with me. Momma Bear had to be forced to go home. People were beginning to think that she worked at the hospital! Dad and Dale were back at the hospital bright and early each and every morning.
    Mom, Dad and Dale all took stress leaves from work. I guess I don't blame them. Dale tried to work but I guess his mind wasn't all there. He made the decision to take time off when he almost got hit by a train. Good choice I'd say!
    My family was amazingly supportive. I had someone by my side 24 hours a day. Even though they were under a great deal of stress, everytime I opened my eyes there was a smiling face looking back at me. I did not see any one of them cry once! I can never thank them enough for this. Without even realizing it I got a lot of my strength from them!
   

The chair that had to be fought for!

   

Curveball...

    My family was awaiting the preliminary results from my lumbar puncture. I'm sure that subconsciously I was too but I was on so many meds and painkillers to seem to care. Dr.Seftal was right. I now had one more thing to add to my growing list of problems... Acute Myeloid Leukemia (AML) in my central nervous system. Let's recap what has been going on so far with me; 3 brain bleeds, intracranial pressure that is through the roof, pneumonia, blood infection, double vision, massive headaches, nausea and vomiting, and now two types of cancer. APL in my bone marrow and blood, and now AML in my spinal fluid and brain. How much can the human body endure? I think I was the ultimate test.
    The doctors had to rethink their plan of action now that they had this new curveball thrown at them. This is extremely rare. Like I had mentioned previously; 1 of 500 cases in the entire world! The doctors would not be having a restful night tonight. They spent the night researching treatments and prognosis. I have now been sedated enough to be able to sleep through the night and let my body rest. I'm going to need all my energy and strength to beat this!
    It wasn't just the doctors that weren't sleeping that evening. My family had no sleep either. I was only allowed one visitor through the night, and Momma bear won. Dad and Dale were hesitant to leave the hospital not knowing what would happen through the night. They would be the first ones waiting at the doors to be let in to visit bright and early the next morning.
    My family anxiously awaited the doctors arrival as they made their morning rounds. This would not be like other mornings however. Instead of the doctors meeting in my room, my family was called into a little conference room instead. This is where they were delivered a devastating blow. They had also found two new bleed on the MRI that were exerting extreme pressure on my brain. "Jamie's outlook does not look good. You should let her friends and family in to say their goodbyes." The doctors continued to say that they were going to do all that they could but they did not believe that my body was strong enough to make it through all the treatments that I was going to need. I don't think cancer knew who it was messing with...


    Now for the plan of action. It is now August 20th, 2009. I was given 2 different types of antibiotics, one for the blood infection, one for the pneumonia. I was also given a diuretic to help drain some fluid off my lungs. The doctors realized that the original bleed in my brain was actually a stroke. That would explain why I felt tingles in my toes and hands when I was in the boat. This would also explain my difficulties walking. The new bleed in my brain was also a stroke caused from the ATRA chemo. This caused both of my feet to fall and now both were placed in splints. 
    Since my pressure was so high they needed to do something about this before any permanent damage occurs. They looked at the option of surgery and inserting a shunt in my head. I was not stable enough to make it through such an operation, and my platelets were so low that they feared that would bleed out on the operating table. Scratch that idea. I was given some sort of diuretic to help drain fluid from my head. The pressure was of some concern but not the main issue at this point...

   

Rollercoaster ride begins...

    After I got my room all nicely set up how I liked it on D6 and made friends with all the nurses they moved me out of there. I had to go back to the ICU. I developed a blood infection from the PICC line that was inserted in my arm. It had to be removed. They put a new one in my right arm.
    Since my immune system was so low, the doctors wanted me to be on the ICU floor to be constantly monitored. My immune system was so vulnerable that I could basically pick up any infection that I came in contact with. They were right. I also picked up pneumonia in addition to the blood infection. Back on the respirator I go. It wasn't that I was unable to breathe on my own, they just wanted to assist my breathing so my body wouldn't have to work as hard. I needed all my energy to battle these 2 infections...oh yah, and the cancer too.
    I must have looked like some sort of robot. I had a tube coming out of my throat, tube coming out of my nose, tubes coming out of my arm, and a catheter. I basically had to lay there and do nothing, I had tubes to do all the work for me. Tube to breathe for me, tube to eat for me, tube to pee for me, tube to fight my cancer for me.

    The next few of my Mom's journal entries are kind of scattered so a few days are missing. I guess her mind was a little preoccupied elsewhere. I've tried to piece it together as best as I could.

    In my last post I had said that Dr.Seftal stated there was a remote chance that I may have leukemia in my brain and spinal fluid as well, my central nervous system (CNS). He wanted to be proactive and started me on another type of chemo treatment for the type of cancer that he sensed (Acute Myeloid Leukemia aka AML). He also started this treatment because the APL cancer that I already had can attack weak areas and the doctors did not want it to attack my existing brain bleeds. 
   The results of my last MRI came back. There was a slight abnormality noted, the doctors said this may be an artifact as a result of movement but they wanted to do further testing to further investigate.
    On August 18th my vitals were stable enough for me to have my first lumbar puncture, also known as a spinal tap. Once again I will spare the details and give a brief overview. Basically you stick a needle in between the vertebrae of your lower back and draw out some spinal fluid. That is the simplified version and it still gives me shivers. The doctors were doing this to get a biopsy of my spinal fluid to send it away for lab analysis, looking for what Dr.Seftal suspected. This procedure was also done to measure the pressure in my head.
    Following the lumbar puncture you are supposed to lay completely flat and not move for 4 and a half hours. This is done because it needs to completely seal which was a difficult task since my platelets were so low. The last thing the doctors wanted was for me to start leaking spinal fluid on top of the cancer, pneumonia and blood infection. At the 2 hour mark I began to vomit profusely again. It is difficult to lay flat on your back when you are vomiting. Luckily I did not leak any spinal fluid which is a bonus! The vomiting would continue until we got the preliminary results back from the lumbar puncture.

Unlucky 13...

    So on day #13 of my chemo, August 13th I awoke with a major headache again. I hadn't slept well the evening before and it seemed I had my days and nights mixed up. All I wanted to do during the day is sleep while at night it was very hard for me to settle down, even with a sleeping pill. The good news was that my bowels had settled down from the day before.
    My nurse gave me some Gravol and morphine for my headache to try to help settle me down. I complained that I was having some nausea. I slept on and off throughout the morning, each time I woke up I complained that my headache was getting worse.
   My white board stats today were as follows: hemoglobin 79, platelets 18 and white blood cells 0.5. Once again this is to be expected as a result of the chemo and medications. The doctors decided that I would have another platelet and blood transfusion on this day to target my platelets to above 20 and my hemoglobin above 80. It was disheartening to wake up and see the numbers on the board and see that they aren't good enough. I felt I was doing something wrong. Maybe I shouldn't have walked so far and exerted myself so much yesterday is a thought that crossed my mind. There goes the pride and sense of accomplishment that I had felt the previous afternoon.
    Even though I was heavily medicated on painkillers my subconscious mind was on a rollercoaster of emotions. I tried to stay positive as best as I could and put on a brave face for my family but there are some days that you just want to lay in bed and be sick. I did not have many days like that, but this, my 13th day of treatments was one of those days.
    I began throwing up very intensely without any warning. I would be laying there sleeping and all of a sudden my bed was a mess. I had 5 or 6 bed and gown changes, like I said those kidney basins are really useless!
    Dr.Seftal, one of my oncologists sent me for an MRI because the pressure in my head remains and he would like a better idea what is going on in terms of the healing process and any possible long term damage that may have occurred. He has some disheartening news that the leukemia may be in my central nervous system (brain) as well but states that it is a very remote chance. He wants to be proactive if this is the case and catch it early. Dr.Seftal also is going to arrange for a more in depth speech/learning assessment to confirm that there are no cognitive learning issues as a result of what is going on inside my head.
    I had not seen it yet, as I had not looked into a mirror since being admitted, but my eyes had no white to them. The outer white portion of my eyes that surrounds the colored part was completely RED. Yes that's exactly how red it was. I must have looked like something out of a horror movie. My family did a good job of hiding it though since I had no idea. They looked at me the same as they normally would! This was a result of the pressure in my head being so high that it burst all the vessels in my eyes. I was also having issues with my vision. Everything I looked at was blurry and doubled.  It made it difficult to watch the Food Network, Ellen, or The Price is Right when you cannot see it. I still enjoyed listening though. I would close my eyes and just listen. It may have appeared that I was asleep so when anyone changed the channel or shut off the TV they would get a not so nice glare. I was the boss, it was my room. At least that was my thoughts :).
    I loved being on D6, I got my own room which could be decorated however I wanted. I had pictures of friends and family all over my walls. I had my own TV which was only allowed to be tuned to 1 of the 3 options I mentioned before. I got to use my laptop and talk to my friends on MSN and Facebook (I needed help typing in passwords since my double vision made it difficult to spell correctly.) I want to thank everyone that I chatted to for putting up with my typos! The only thing I wasn't allowed to have in D6 was flowers. (I didn't mind since I think they are a waste of money because they don't last long!)

Sorry for the scary picture, but this is exactly how my eyes looked.