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.
Wednesday 9 May 2012
Monday 30 April 2012
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!
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      |
Friday 27 April 2012
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!
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! |
Friday 20 April 2012
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...
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...
Thursday 19 April 2012
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.
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.
Wednesday 18 April 2012
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!)
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.
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.
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.
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!
Tuesday 17 April 2012
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!**
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!**
Saturday 24 March 2012
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.**
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.**
Thursday 23 February 2012
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!
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!
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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