Saturday, May 31, 2014
Day Pass
Well yesterday was my first day pass and it was fantastic! Mom and I didn't do anything particularly exciting, just a crossword puzzles and lunch. But the mere fact that it wasn't here in the hospital was fantastic! I got to eat real food, hear the birds sing, have a cup if tea not in a to go mug. Lovely! Today Madeleine comes down so I'm already pushing the nurses to hurry up. Lol
Friday, May 30, 2014
slow as a turtle
Its been a couple of days since I posted. I apologise but there are some days when I have no physical energy left to post. I really had hoped to do it everyday but cest la vie.
Counts were up around two but have dropped slightly today. Apparently there can be fluctuations in the blood counts as engraftment happens.
The doctor thinks I'm ready to go out on passes now. That means my family is going to come live here are start taking me out several hours a day building up to overnights. Its the beginning step to getting out of here.
And I really am ready to get out of here. I have been in the hospital for a month and a half. It's hard on the psyche and the soul. But this weekend, my daughter is coming down as is my whole family. This is really the first time I have seen Madeleine in a month a a half except ICU. I am very excited.
Counts were up around two but have dropped slightly today. Apparently there can be fluctuations in the blood counts as engraftment happens.
The doctor thinks I'm ready to go out on passes now. That means my family is going to come live here are start taking me out several hours a day building up to overnights. Its the beginning step to getting out of here.
And I really am ready to get out of here. I have been in the hospital for a month and a half. It's hard on the psyche and the soul. But this weekend, my daughter is coming down as is my whole family. This is really the first time I have seen Madeleine in a month a a half except ICU. I am very excited.
Monday, May 26, 2014
hi everyone
Hi everyone,
I just want everyone to know I am still here. I have little energy so this will be short.
I am finally coming to terms with my time in the last 10 days. I have been having a hard time dealing with everything.
To Give you some idea but not for getting pitY here are some of the things I now deal with.
I need help going to the bathroom especially at night when I wear adult depends just in case. I find this very hard as I have been so independent
I have sometimes needed someone to feed me when I'm took weak or sick to do it. This is getting better now
I struggle with fatigue I have never felt before. My head hurts when I tired and I am trying to make decisions. I fight the fatique but worry fighting myself more.
These are just a few of the setbacks I've had. What I learned today is that it takes three days to recover from every one spent in ICU. I spent four days in ICU....I've been out for about seven.
But this is not to be despairing. Everyone is very happy with my progress since ICU. They say I'm ahead of the game. It is hard to see but I notice the changes in my strength day to day. As the doctor says, my job is to rest, eat and do physio. It is hard for me to do only those things but I'm learning to accept one day at a time.
I still love to get emails, and messages. My internet is a bit flaky so sometimes it takes a while to get here. Probably more now than ever I need this kind of support. My auntie must return home and I will be here alone alot. I hopefully will be able to have visitors soon....it has more to do with fatique than anything. Please call and write. I miss you all.
In the interest of the people in my life who want/need to get healthier and want a different way to support my journey...I will try to log my daily physio. I know it will seem not worth doing but every movement isgood and it will encourage me to see other people doing what I'm doing so they can be with me longer and healthier
Today.... 100 m walk, sit on bed with proper posture. Stretch neck left and right up and down. Do five shoulder circles. Pull shoulders to ears and release three times. Reach above head with each arm once. Hugging yourself, gently stretch to one side and the other. Feet on the floor. Point and flex toes alternative my 10 times. Sitting...pull leg to straighten knee once per side. Standing with something to maintain stability....do 10 lifts with your calves. Here are that last and hardest for me. First while standing, pull foot up towards bum three times. Sitting, hug yourself a and stand up with no hand support three times.
I just want everyone to know I am still here. I have little energy so this will be short.
I am finally coming to terms with my time in the last 10 days. I have been having a hard time dealing with everything.
To Give you some idea but not for getting pitY here are some of the things I now deal with.
I need help going to the bathroom especially at night when I wear adult depends just in case. I find this very hard as I have been so independent
I have sometimes needed someone to feed me when I'm took weak or sick to do it. This is getting better now
I struggle with fatigue I have never felt before. My head hurts when I tired and I am trying to make decisions. I fight the fatique but worry fighting myself more.
These are just a few of the setbacks I've had. What I learned today is that it takes three days to recover from every one spent in ICU. I spent four days in ICU....I've been out for about seven.
But this is not to be despairing. Everyone is very happy with my progress since ICU. They say I'm ahead of the game. It is hard to see but I notice the changes in my strength day to day. As the doctor says, my job is to rest, eat and do physio. It is hard for me to do only those things but I'm learning to accept one day at a time.
I still love to get emails, and messages. My internet is a bit flaky so sometimes it takes a while to get here. Probably more now than ever I need this kind of support. My auntie must return home and I will be here alone alot. I hopefully will be able to have visitors soon....it has more to do with fatique than anything. Please call and write. I miss you all.
In the interest of the people in my life who want/need to get healthier and want a different way to support my journey...I will try to log my daily physio. I know it will seem not worth doing but every movement isgood and it will encourage me to see other people doing what I'm doing so they can be with me longer and healthier
Today.... 100 m walk, sit on bed with proper posture. Stretch neck left and right up and down. Do five shoulder circles. Pull shoulders to ears and release three times. Reach above head with each arm once. Hugging yourself, gently stretch to one side and the other. Feet on the floor. Point and flex toes alternative my 10 times. Sitting...pull leg to straighten knee once per side. Standing with something to maintain stability....do 10 lifts with your calves. Here are that last and hardest for me. First while standing, pull foot up towards bum three times. Sitting, hug yourself a and stand up with no hand support three times.
Slow but steady ...
Another pause between posts as there never seems to be enough hours in the day!
Let's start with the good news: Elizabeth's white blood cell and neutrophil counts continue to rise, and the various blood cultures are all coming back negative. We need these patterns to continue, and hopefully add more markers such as platelets and red blood cells. Until we see those, Elizabeth continues to get transfusions of platelets and red blood cells.
Elizabeth's biggest challenges right now are adjusting her high expectations and accepting the fact that she still has a way to go before she can leave the hospital or return to Edmonton. She's very emotional right now, and understandably so! She wasn't sent to ICU because they wanted to clean the floors in her room!
She got sent to ICU because the transplant unit was not able to stabilize the variations in her fever, pulse and blood pressure. ICU has a wider range of stronger drugs available to them, as well as some pretty cool equipment (yep, I'm a nerd). Elizabeth's condition was serious. They called us down from Edmonton, and we spent a pretty long Victoria Day weekend taking turns by her bedside. She was on a dizzying array of medicines to control bacterial, viral and fungal infections; pulse and blood pressure;pain and anxiety. She remembers bits and pieces of her time there, and she's adamant that she's not returning!
Now that she's back on the unit, she wants to dazzle everyone with her rapid recovery and be out the door as soon as possible. If this were a movie, we would have snippets of her walking and doing physio ending with a smiling Elizabeth walking out of the hospital and climbing into a convertible with David.
Unfortunately, this is not a movie. Elizabeth has some hard work in the weeks ahead. Yesterday, the warden let use spring her for a few hours. All we did was go down to the apartment and back up, but it was hard on her. There were three of us assisting her, and it's frustrating for her to realize her limitations.
She's still not ready for friends to visit, but your prayers, cards and letters are all greatly appreciated. I will try to post more regularly, but don't expect a lot of detail about ICU. It was a rough time for all of us, but especially Elizabeth. We're not going to relive it for a blog post!
As always, thank you all for the kind wishes, cards and prayers. They mean a great deal to Elizabeth.
Michael
Let's start with the good news: Elizabeth's white blood cell and neutrophil counts continue to rise, and the various blood cultures are all coming back negative. We need these patterns to continue, and hopefully add more markers such as platelets and red blood cells. Until we see those, Elizabeth continues to get transfusions of platelets and red blood cells.
Elizabeth's biggest challenges right now are adjusting her high expectations and accepting the fact that she still has a way to go before she can leave the hospital or return to Edmonton. She's very emotional right now, and understandably so! She wasn't sent to ICU because they wanted to clean the floors in her room!
She got sent to ICU because the transplant unit was not able to stabilize the variations in her fever, pulse and blood pressure. ICU has a wider range of stronger drugs available to them, as well as some pretty cool equipment (yep, I'm a nerd). Elizabeth's condition was serious. They called us down from Edmonton, and we spent a pretty long Victoria Day weekend taking turns by her bedside. She was on a dizzying array of medicines to control bacterial, viral and fungal infections; pulse and blood pressure;pain and anxiety. She remembers bits and pieces of her time there, and she's adamant that she's not returning!
Now that she's back on the unit, she wants to dazzle everyone with her rapid recovery and be out the door as soon as possible. If this were a movie, we would have snippets of her walking and doing physio ending with a smiling Elizabeth walking out of the hospital and climbing into a convertible with David.
Unfortunately, this is not a movie. Elizabeth has some hard work in the weeks ahead. Yesterday, the warden let use spring her for a few hours. All we did was go down to the apartment and back up, but it was hard on her. There were three of us assisting her, and it's frustrating for her to realize her limitations.
She's still not ready for friends to visit, but your prayers, cards and letters are all greatly appreciated. I will try to post more regularly, but don't expect a lot of detail about ICU. It was a rough time for all of us, but especially Elizabeth. We're not going to relive it for a blog post!
As always, thank you all for the kind wishes, cards and prayers. They mean a great deal to Elizabeth.
Michael
Thursday, May 22, 2014
ENGRAFTMENT!
A quick post since I'm at work. Dr. Geddes came in this morning and told Elizabeth that the test results (blood, not biopsy) show engraftment. Elizabeth will not need a supplemental transplant of donor stem cells. It's now a waiting game while the bone marrow continues to grow and produce blood cells. Right now, it's just producing white blood cells and neutrophils. As the marrow establishes itself, it will start producing other cell types. Red blood cells will be the last.
If you're following numbers, her WBC and neutrophils are both at 1. That's 1.0, which means she's gone from .1 to .3 to .6 to 1.0 in three days!
Thank you all for your good wishes and prayers. We're still not out of the wood, so please keep them coming!
If you're following numbers, her WBC and neutrophils are both at 1. That's 1.0, which means she's gone from .1 to .3 to .6 to 1.0 in three days!
Thank you all for your good wishes and prayers. We're still not out of the wood, so please keep them coming!
Wednesday, May 21, 2014
Bone Marrow Biopsy
They went ahead and did the bone marrow biopsy today. I didn't want Elizabeth to have to go through that, but it will provide an accurate picture of her bone marrow. The good news: they gave her a general anesthetic, and the process went well.
Smiles all around today!
Smiles all around today!
27 is now my favorite number!
Day 27 has brought extremely good news! This is going to be short, but I thought you would all like to be in on the good news.
Elizabeth's WBC count is .6 this morning, and her neutrophils are .5. These results are definite signs of engraftment.
There is still a long way to go, but this is fantastic news! Elizabeth's comment to me was, "We're working a muscle here, so keep the prayers coming."
Tuesday, May 20, 2014
Day 26
It's been a few days since the last update. I'm going to try to bring everybody up to speed. I think an introduction is the first order of business. I'm Michael, Elizabeth's father, and she asked me to follow in David's and Linda's footsteps as a guest blogger.
Elizabeth wrote the last post a week ago. The week has been difficult for her. Because I know most of you want to know how she is now, I'm going to use this post to pass along both her requests and her current condition.
First, the requests. Elizabeth appreciates all care and concern that has been expressed, but she is not strong enough yet to respond to comments or email, accept chat requests or talk on the telephone. She is very happy to receive comments and email but she cannot acknowledge them at this point. Because of her compromised immune system, she cannot accept food or flowers.
Where does that leave you? She loves to get cards. If you can, send cards to her at
On Day 21 (Thursday, May 15), Elizabeth's health deteriorated rapidly. She had a fever, dangerously low blood pressure, dangerously high pulse, etc. The best explanation so far is that she was in septic shock. Because they couldn't control what was happening in the transplant unit, they transferred her to the Intensive Care Unit (ICU). She remained there through a roller-coaster ride of disease processes, side effects, and all the tests that go along with the evaluation and treatments.
I will post details of the time between Day 21 and Day 26 in a later post. Here is where Elizabeth is tonight:
Right now, they have a bone marrow biopsy scheduled to see if the donor's stem cells have taken up residence in the bones. It's an unpleasant procedure, but it's the most accurate test. They will use the results to decide on further tests and/or supplemental stem cell transplants.
I will add at least one more post about the time in ICU, but this is already longer than I wanted. Good night, and keep the prayers coming!
Michael
Elizabeth wrote the last post a week ago. The week has been difficult for her. Because I know most of you want to know how she is now, I'm going to use this post to pass along both her requests and her current condition.
First, the requests. Elizabeth appreciates all care and concern that has been expressed, but she is not strong enough yet to respond to comments or email, accept chat requests or talk on the telephone. She is very happy to receive comments and email but she cannot acknowledge them at this point. Because of her compromised immune system, she cannot accept food or flowers.
Where does that leave you? She loves to get cards. If you can, send cards to her at
3412 Parkdale Blvd NW, Apt 402Her second request is that you keep her in your prayers, and request any prayer groups, chains, circles or congregations to pray hard for the engraftment, for the successful defeat of her infections and for the strength and peace to get through the remaining procedures and challenges.
Calgary, AB T2N 3T4.
On Day 21 (Thursday, May 15), Elizabeth's health deteriorated rapidly. She had a fever, dangerously low blood pressure, dangerously high pulse, etc. The best explanation so far is that she was in septic shock. Because they couldn't control what was happening in the transplant unit, they transferred her to the Intensive Care Unit (ICU). She remained there through a roller-coaster ride of disease processes, side effects, and all the tests that go along with the evaluation and treatments.
I will post details of the time between Day 21 and Day 26 in a later post. Here is where Elizabeth is tonight:
- Elizabeth has been transferred back to the transplant unit.
- Almost all of the various tubes, sensors, etc. have been removed.
- Her pulse and blood pressure are under control.
- The yeast infection has made an appearance, and the staph infection is still there.
- Two new infections have been detected. (Sorry, I don't know what they are.)
- The strep infection appears to be gone.
- She has more mobility than the staff expected
- Her white blood cell count (WBC) is .3. This is good - it's been alternating between .1 and .2.
Right now, they have a bone marrow biopsy scheduled to see if the donor's stem cells have taken up residence in the bones. It's an unpleasant procedure, but it's the most accurate test. They will use the results to decide on further tests and/or supplemental stem cell transplants.
I will add at least one more post about the time in ICU, but this is already longer than I wanted. Good night, and keep the prayers coming!
Michael
Tuesday, May 13, 2014
Reflection
Dear family and friends,
It has been a few days since I posted and I started receiving some inquiring texts. Please know everything is okay but it has been an overwhelming few days. I wasn't sure what to say or how I felt or in someways even what was going on.
It seems to be that when everything feels like its going the right way, a speed bump appears under my tires. You know the kind that are about 2 ft wide and blend into the pavement so you don't know you have hit them until your chassis scraping accross the top. And all you can do is keep going , cringing every inch.
Well to make several long days stories short: I have two infections now. A staph which we knew about and now strep. Both of these are likely from my own body rather than outside sources. We pulled out the PICC line because bacteria like to hide in the crevices of the plastic tubing though we did try to save it via antibiotics. The bacteria I have are being resistant to the run of the mill stuff so I'm back on the loaded guns. I have no central vein access only IVs. We are babying them along as they half to be changed every four days or when the vein blows. All my other drugs are by mouth now which means breakfast consists of pills and liquids, as does other mealtimes.
One of the other problems PICC lines is they can encourage blood clots. Sure enough, even with low platelets, I found out today I have two in my arm. Typically these just get reabsorbed into the body with no issues. Mine are currently not causing any problems though my doctor did write me off discus and javelin for now.
Of course the big question in everyone's mind is blood counts. So far nothing. This could mean a lot of things. Firstly, that I have slow engraftment. The 16 day engraftment is an average pulled from stem cell transplant patients. Most have cancer. Aplastic anemia (AA) may be more sluggish to respond. A bone marrow transplant (which is actual bone marrow material, not the kind I got) response in AA patients is 33 days. They don't do many AA transplants period because we are so rare and even fewer are stem cell.
The other options are far more complicated and far more to deal with but essentially would require getting more stem cell material and boosting or trying again.
All that considered my body is doing well. I am mostly out of pain, I'm eating very well and I'm still able to walk quite a bit. I am not SICK considering I have two infections. My body strength has definitely degraded but I work with physio everyday. The only odd thing is my intense desire to eat red licorice which I am doing as we speak.
My biggest challenge right now is the emotional side. I've been here for a long time without seeing most of my family. This weekend will be the first time to see Madeleine and my parents since I came. I am trying to take care of all of them in my own way with few resources and little good information.
I believe this has been probably harder on my family than me. They want to care for me but are inhibited by work, distance and the phobia of bringing something in.
Madeleine has been a trooper like no other. She as an inner strength I never saw before and I am so proud of her. She is doing at seven what adults have a hard time doing after decades of living.
All of this is made better by Linda's presence. She has a natural calm and strength. She is as smart as a whip and has been diligently mastering the terminology and medical information to help me sort through my priorities. And I trust her to know my needs and make decisions about whether I've eaten enough, slept enough etc. Its a relief to all of us have the care and love of such an unselfish woman.
I am also reminded during this time of my grandfather in WWII. He was part of the Burma Campaign, one of the forgotten fronts of the war. I think of him and how it must of been to keep going every day. Not knowing what he was going to face on patrol, not knowing what orders were going to be handed down. And not knowing what his family was doing at home. But everyday, knowing he had to lead his men in an orderly fashion around the chaos to hopefully make a difference.
My grandfather rarely talked about these times and certainly never to me. Mom said the war changed him, made him harder. But he survived and came home to care for his family.
I draw great strength from remembering him. I believe he chose his actions everyday not based on his fear or confidence but on the courage of what needed to be done and his duty to his men.
Above all, I have faith. Though I struggle to see it, all good things will come in time and God will walk me through this.
Until next time, all my love,
E
It has been a few days since I posted and I started receiving some inquiring texts. Please know everything is okay but it has been an overwhelming few days. I wasn't sure what to say or how I felt or in someways even what was going on.
It seems to be that when everything feels like its going the right way, a speed bump appears under my tires. You know the kind that are about 2 ft wide and blend into the pavement so you don't know you have hit them until your chassis scraping accross the top. And all you can do is keep going , cringing every inch.
Well to make several long days stories short: I have two infections now. A staph which we knew about and now strep. Both of these are likely from my own body rather than outside sources. We pulled out the PICC line because bacteria like to hide in the crevices of the plastic tubing though we did try to save it via antibiotics. The bacteria I have are being resistant to the run of the mill stuff so I'm back on the loaded guns. I have no central vein access only IVs. We are babying them along as they half to be changed every four days or when the vein blows. All my other drugs are by mouth now which means breakfast consists of pills and liquids, as does other mealtimes.
One of the other problems PICC lines is they can encourage blood clots. Sure enough, even with low platelets, I found out today I have two in my arm. Typically these just get reabsorbed into the body with no issues. Mine are currently not causing any problems though my doctor did write me off discus and javelin for now.
Of course the big question in everyone's mind is blood counts. So far nothing. This could mean a lot of things. Firstly, that I have slow engraftment. The 16 day engraftment is an average pulled from stem cell transplant patients. Most have cancer. Aplastic anemia (AA) may be more sluggish to respond. A bone marrow transplant (which is actual bone marrow material, not the kind I got) response in AA patients is 33 days. They don't do many AA transplants period because we are so rare and even fewer are stem cell.
The other options are far more complicated and far more to deal with but essentially would require getting more stem cell material and boosting or trying again.
All that considered my body is doing well. I am mostly out of pain, I'm eating very well and I'm still able to walk quite a bit. I am not SICK considering I have two infections. My body strength has definitely degraded but I work with physio everyday. The only odd thing is my intense desire to eat red licorice which I am doing as we speak.
My biggest challenge right now is the emotional side. I've been here for a long time without seeing most of my family. This weekend will be the first time to see Madeleine and my parents since I came. I am trying to take care of all of them in my own way with few resources and little good information.
I believe this has been probably harder on my family than me. They want to care for me but are inhibited by work, distance and the phobia of bringing something in.
Madeleine has been a trooper like no other. She as an inner strength I never saw before and I am so proud of her. She is doing at seven what adults have a hard time doing after decades of living.
All of this is made better by Linda's presence. She has a natural calm and strength. She is as smart as a whip and has been diligently mastering the terminology and medical information to help me sort through my priorities. And I trust her to know my needs and make decisions about whether I've eaten enough, slept enough etc. Its a relief to all of us have the care and love of such an unselfish woman.
I am also reminded during this time of my grandfather in WWII. He was part of the Burma Campaign, one of the forgotten fronts of the war. I think of him and how it must of been to keep going every day. Not knowing what he was going to face on patrol, not knowing what orders were going to be handed down. And not knowing what his family was doing at home. But everyday, knowing he had to lead his men in an orderly fashion around the chaos to hopefully make a difference.
My grandfather rarely talked about these times and certainly never to me. Mom said the war changed him, made him harder. But he survived and came home to care for his family.
I draw great strength from remembering him. I believe he chose his actions everyday not based on his fear or confidence but on the courage of what needed to be done and his duty to his men.
Above all, I have faith. Though I struggle to see it, all good things will come in time and God will walk me through this.
Until next time, all my love,
E
Sunday, May 11, 2014
Day 16- quiet day
I have always been a little competitive. I like to win, understand more and be the first. I was also brought up with a healthy sense of getting things done right and being humble about one's accomplishments. It has also left me with the pebble-kicking impulse "fine....didn't like it anyway" sulk until the next more interesting thing comes along.
My initial reaction to transplant is, "I'm going to engraft faster than any one ever before!" Okay...well that maybe that one is not really in my control.
The next in line is "I will be their best patient ever and be rewarded with an earlier engraftment."
Last week, my doctor gave me the average of 16 days with all the usual caveats of being an individual...can't expect the same....blahg blah.
There, a number! In my mind, around the 16th day, I peeped and poked, just imagining the sastisfaction I would have when the blood results would appear on my calendar and I could proclaim " AH-HAH, engraftment, I knew it! Break out the cake." And all around me would knod in agreement, "yes, we knew she would be better sooner....did you see how diligent she was with hygiene and walking???"
Yes, I did just had the same gag reaction you did.
AND, as you may have noticed, yesterday was Day 16. My white blood counts declined slightly.
And these are the moments, when I do a face-palm into my forehead and God chuckles.
So no "obvious" signs of engraftment except that I feel really good. I'm up, showered and dressed. I'm pushing the limits of food and I'm walking more than they think is necessary.
And most importantly, I'm happy. Joyfully content to be enjoying renconnecting relationships, dreaming about new opportunities, and relishing in the blessings that have been poured out upon me.
Silly girl!
Today, for the first time in 27 days, I'm leaving for a short day pass to spend it with Auntie and David at the apartment to enjoy what really matters,cake and tea with people who love me!
My initial reaction to transplant is, "I'm going to engraft faster than any one ever before!" Okay...well that maybe that one is not really in my control.
The next in line is "I will be their best patient ever and be rewarded with an earlier engraftment."
Last week, my doctor gave me the average of 16 days with all the usual caveats of being an individual...can't expect the same....blahg blah.
There, a number! In my mind, around the 16th day, I peeped and poked, just imagining the sastisfaction I would have when the blood results would appear on my calendar and I could proclaim " AH-HAH, engraftment, I knew it! Break out the cake." And all around me would knod in agreement, "yes, we knew she would be better sooner....did you see how diligent she was with hygiene and walking???"
Yes, I did just had the same gag reaction you did.
AND, as you may have noticed, yesterday was Day 16. My white blood counts declined slightly.
And these are the moments, when I do a face-palm into my forehead and God chuckles.
So no "obvious" signs of engraftment except that I feel really good. I'm up, showered and dressed. I'm pushing the limits of food and I'm walking more than they think is necessary.
And most importantly, I'm happy. Joyfully content to be enjoying renconnecting relationships, dreaming about new opportunities, and relishing in the blessings that have been poured out upon me.
Silly girl!
Today, for the first time in 27 days, I'm leaving for a short day pass to spend it with Auntie and David at the apartment to enjoy what really matters,cake and tea with people who love me!
Saturday, May 10, 2014
Day 15 and some random pics.
Day 15 went very well.
I got a bag of platelets to stop the bruising. There are many tiny bruises (call petechiae) all over my body. Petechiae are tiny blood capilliaries vessels bursting just below the skin. I've included a picture(albeit not great selfie, LOL) from the upper arm.
These were caused within 20 mins of having air stocking on in which we forgot to fold a seam on my pants correctly.
I also got a bag of blood. Between the blood and quantity of steroids I'm on, I have a teeny weenie bit of energy LOL
I managed to eat a cup of watermelon and a bowl of cereal, half a turkey sandwich , small bowl of soup, two pieces of roast beef and a scoop of mashed potatoes, two mugs of tea, digestives cookies and finally a Baby Bell cheese round. I am very proud of this accomplishment. It is one of the markers they look for in moving out of the ward to independence.
And did we ever walk. We forgot to count our laps but I would say we hit the 1 km mark.
While I do definitely have a staph infection, the doctor is more worried about keeping the yeast infection gone especially because they can rear their ugly heads up later and cause far more problems. If the staph infections continues, we will likely pull out the PICC line. But that is a decision left for after the weekend.
For the weekend we are just watching with anticipated breath for those white blood cell counts to rise. David will be here tomorrow and I'm excited to see him. I'm hoping the everything will be cleared for my family coming next weekend. We all miss each other very much but we are also focused on the end goal of happy and HEALTHY. Its been five weeks since I've last hugged Madeleine. Or Josh or my parents or my dog!
I have a new found respect for families who must spend times separated for work or duty!
Below I added some pictures from Linda's camera. They are random.
Been lots of rain and snow in Calgary. View from my window.
Horrible potassium drink.I have micro-tears in my mouth and GI track from pushing the solid food. Tonight's dose actually made me cry after a few choice expletives.
I fell asleep while lifting the spoon. Linda had go keep waking me up reminders to chew and swallow.
MY new PICC line. The white covers are burn netting to help reduce catching and pulling. The line runs right on the inside of my bicep and so the picture orientation is correct for you.
Veronica, my lovely PCA. She has taken such great care of us. The is the amazing strawberry milkshake maker and all around gold star person!
Two last things?
1. Does anyone have a good tried and true high protein snack recipe? Like a granola bar not as sweet? Would you share in the comments below?
2. Also, did anyone get to enjoy something special that was pretty normal? Mine was having a cup of tea with cookies after dinner. It was so relaxing and creamy, The cookies were plain but ones that took me back to my childhood. Share in the comments below it you want to.
Anyhoo,
Off to sleep. Have a great day!,
Hugs and love,
E
I got a bag of platelets to stop the bruising. There are many tiny bruises (call petechiae) all over my body. Petechiae are tiny blood capilliaries vessels bursting just below the skin. I've included a picture(albeit not great selfie, LOL) from the upper arm.
These ones are likely caused by the blood/pressure cuff and my platelet level was six.
I also got a bag of blood. Between the blood and quantity of steroids I'm on, I have a teeny weenie bit of energy LOL
I managed to eat a cup of watermelon and a bowl of cereal, half a turkey sandwich , small bowl of soup, two pieces of roast beef and a scoop of mashed potatoes, two mugs of tea, digestives cookies and finally a Baby Bell cheese round. I am very proud of this accomplishment. It is one of the markers they look for in moving out of the ward to independence.
And did we ever walk. We forgot to count our laps but I would say we hit the 1 km mark.
While I do definitely have a staph infection, the doctor is more worried about keeping the yeast infection gone especially because they can rear their ugly heads up later and cause far more problems. If the staph infections continues, we will likely pull out the PICC line. But that is a decision left for after the weekend.
For the weekend we are just watching with anticipated breath for those white blood cell counts to rise. David will be here tomorrow and I'm excited to see him. I'm hoping the everything will be cleared for my family coming next weekend. We all miss each other very much but we are also focused on the end goal of happy and HEALTHY. Its been five weeks since I've last hugged Madeleine. Or Josh or my parents or my dog!
Below I added some pictures from Linda's camera. They are random.
Linda wanted a picture up of all the drugs they are running . I have the equivalent of three IVs. During treatment days, I have all three lumens with back to back continuous infusions.
MY new PICC line. The white covers are burn netting to help reduce catching and pulling. The line runs right on the inside of my bicep and so the picture orientation is correct for you.
Two last things?
1. Does anyone have a good tried and true high protein snack recipe? Like a granola bar not as sweet? Would you share in the comments below?
2. Also, did anyone get to enjoy something special that was pretty normal? Mine was having a cup of tea with cookies after dinner. It was so relaxing and creamy, The cookies were plain but ones that took me back to my childhood. Share in the comments below it you want to.
Anyhoo,
Off to sleep. Have a great day!,
Hugs and love,
E
Friday, May 9, 2014
Day 14 and holding
I
So Day 14....
The day started off per normal with routine blood and culture work.Couple hours later, the night nurse is running back in to take another set. He would only tell me that I had a positive from both of my PICC line lumens and I needed to talk to the doctor. Shift changed right away, so it would be some time before I got to see him.
Low down, the new infection detected: a staph infection. Now depending on your medical background, that's either no big deal, or its a big deal and you would be correct. There is staph infection that can do a lot of damage but I have been on a prophylactic (preventative) drug dose for the really bad one. It is now down to figuring out which one I have.
In terms of the fungal infection, we still are waiting more negative results before we finally can ease up on that.
Yesterdays main challenge was managing myself. I am on high doses on prednisone now. That is the only immuno-suppression they can use (drug to keep my graft happy) until my kidneys catch up with processing all the extra fluids, about 22 llbs worth of it.
Elizabeth on steroids is lots of Elizabeth with an extra dose of it....yup Elizabeth. Steroids make me feel emotion more intensely and I have a greater capacity to focus and push through. And they also take away a lot of the "sorrys" and "excuse mes" of our culture. I have a reduction in my compassion or empathy for others. As my family will reflect, it's liquid self estteem and self courage in a bottle, and not always in a nice way.
But before you run off for a dose, these positive effects only happen in a small percentage of people and the side effects of the drug itself can be quite alarming especially young adults. All in all, only take it when Doctor says to take it!
Yesterday that meant functioning on about two and a half hours of sleep, sleeplessness is part of steroids. The only way to survive is power naps throughout the day. A 10-45 min crash nap can keep me going but I knew it would catch up with me eventually. They were able to track down my little blue pill fom years ago and so I wasn't faced with a sleepless night.
All and all, things get a little better all the time. We are still watching and waiting for the white counts to come up. That we be like Christmas morning when I get those.
I'm shutting down as most of you are getting up. Have a great day and for my sake, really stop and savour something in your everyday: like a delicious piece of food, a hot shower, cuddling with your family....whatever you want. But just breathe in the whole moment!
Love and hugs,
E
Thursday, May 8, 2014
Day 12 and 13
It has been such a whirlwind of activity around here, I literally have not had time to write. Yesterday morning (Wednesday), I tried to sit down on three separate occasions to write you, only to be pulled away.
Because time has very little meaning here, I will giving you the random highlights in a loose order if I can.
We have now had two days of negative blood culture results for fungi (this is good) but have a confirmation that we are infection free, we need five negative results.The lab has pinpointed the type of fungi we are working with so my medication has been toned down from the entire military to special ops. This is also good because this morning my kidneys are unhappy with the big guns. We were unsure about my tolerance to this group of anti-fungals but so far there haven't been any reactions.
I also got a PICC line insterted yesterday. It is threaded into the same vein as my CVC but it exits just above my elbow rather than on my chest. Two bright young women pumped up my bed so I had a great view of the city and got to work. It was painfree and simple. More importantly, it meant my IV and sub-Q line came out and I could return most of the meds back to IV format. YAY! NO MORE POTASSIUM SHOTS...at least for now.
It appears to me that my mouth and GI track is starting to heal. I got 3/4 of a small chicken breast down. It took me an hour to do it very gently but I did. Auntie Linda was doing the happy dance. In fact my appetite is better all the way round. I'm starting to crave all kinds of things. Fresh homemade bead slathered with butter, a gooy piece of pepperoni and mushroom pizza, or a slice of decadent chocolate torte. mmmmhhhhhhh I even have a little craving for McD's sausage sandwich but alas that one will have to wait as I won't be able to dine out for a long time at any restaurant.
I have been up and walking a lot. The nurses all are impressed at Linda and I peeling rubber around 57.
I want to say a huge thank-you to all the people who have been praying for me. I believe that every one is heard. We are still in a dicey position in terms waiting for the infection to clear and the bone marrow to engraft and start helping. So please don't cut me off your list quite yet.
I did want to share a couple of photos as well. My Dad, Michael really wanted to shave his head to show his support of my journey. So I received this one evening. He had gone out and done it without warning my anyone. My poor mother must have been shocked. Madeleine thought it was great and she laughed and laughed.
A couple of days later, I got this texted to me, fresh from the barbers shop
And this afternoon, this one. Josh (David's son) is on the left. Trevor (Josh's friend) on the right.
These men have made me feel very special indeed, like a million bucks. I know my journey hasn't been easy on them, particularly David and Michael but this gesture really tells me how I am loved and cared for. So thank-you gentlemen!
Well its 3:30 A.M. and time for my bed. Wishing you all the happiness and laughter tomorrow can bring.
Hugs and kisses,
E
Because time has very little meaning here, I will giving you the random highlights in a loose order if I can.
We have now had two days of negative blood culture results for fungi (this is good) but have a confirmation that we are infection free, we need five negative results.The lab has pinpointed the type of fungi we are working with so my medication has been toned down from the entire military to special ops. This is also good because this morning my kidneys are unhappy with the big guns. We were unsure about my tolerance to this group of anti-fungals but so far there haven't been any reactions.
I also got a PICC line insterted yesterday. It is threaded into the same vein as my CVC but it exits just above my elbow rather than on my chest. Two bright young women pumped up my bed so I had a great view of the city and got to work. It was painfree and simple. More importantly, it meant my IV and sub-Q line came out and I could return most of the meds back to IV format. YAY! NO MORE POTASSIUM SHOTS...at least for now.
It appears to me that my mouth and GI track is starting to heal. I got 3/4 of a small chicken breast down. It took me an hour to do it very gently but I did. Auntie Linda was doing the happy dance. In fact my appetite is better all the way round. I'm starting to crave all kinds of things. Fresh homemade bead slathered with butter, a gooy piece of pepperoni and mushroom pizza, or a slice of decadent chocolate torte. mmmmhhhhhhh I even have a little craving for McD's sausage sandwich but alas that one will have to wait as I won't be able to dine out for a long time at any restaurant.
I have been up and walking a lot. The nurses all are impressed at Linda and I peeling rubber around 57.
I want to say a huge thank-you to all the people who have been praying for me. I believe that every one is heard. We are still in a dicey position in terms waiting for the infection to clear and the bone marrow to engraft and start helping. So please don't cut me off your list quite yet.
I did want to share a couple of photos as well. My Dad, Michael really wanted to shave his head to show his support of my journey. So I received this one evening. He had gone out and done it without warning my anyone. My poor mother must have been shocked. Madeleine thought it was great and she laughed and laughed.
A couple of days later, I got this texted to me, fresh from the barbers shop
And this afternoon, this one. Josh (David's son) is on the left. Trevor (Josh's friend) on the right.
Well its 3:30 A.M. and time for my bed. Wishing you all the happiness and laughter tomorrow can bring.
Hugs and kisses,
E
Tuesday, May 6, 2014
Day 11
The day started off roughly, as I was hurting getting out of bed. There are mornings, when I need help to the bathroom, mimicking the actions of a 90 year old. I do hope that does not offend any of my readership who are coming into their 90s and doin' just fine.
After I was sent for a ultrasound of my internal GI organd. My mouth and tongue so swollen from mouth sores, it was difficult to speak. I lay flat on my back for an one and a half , trying to answer questions about my gut.
This is difficult with fluid on the lungs and when my pain button Is out of reach. By the time I got up satirs and back to my bed, I was crying trying to hit the pain control button as off as I could.
I know, I know, where's the good day.
Well, while my doctor came back in to say I did have as infection in my blood, he felt that we would have it under control. He had Infectious Diseases called in. They are going to examine to find out more about the fungas and what specific drug will treat it. In the meantime, my kidneys are holding up to the big guns they are firing at, as it my one IV.
Also I don't feel sick. It tells me that my mind body and soul are holding up well. There are definitely moments of scared tears, but is wonderful support here, so a few tears are overcome quickly.
One of the compromises I'm making? I will take as many of my medications through my mouth as possible. This big anti fugal tends to "waste" potassium, essentially pulling great amounts of it out. Now potassium by IV sucks. It burns and irratates the vein horribly.
And this my dear friends is where I salute my fraternity brothers and sister's and any Slav who has drank with me. I owe you a debt of gratitude. Shooting liquid potassium is much like shooting a nasty bar-made shot. It BURNS!!!! But I feel I have been made ready by these old occasions of saluting good health or an ex-boyfieids new- found, ill-health
The rest of the day passed quietly with Auntie Linda. I even got a back massage from physio. I had a lovely time chatting my aunt and David as well. When bed-time rolled around, I was tucked in snug by my lovely night nurse. And even treated with cookies at 2.A.M.
This morning I am awake, painfree and watching a sunrise over Calgary.
I hope each one of you has a great day and I will post tomorrow.
Love and hugs
E
PS.here are some pics I received from lovely friends and proof for Ihor that my hair really is mostly gone, not just shaved.
Proof for Ihor
Sunday, May 4, 2014
Coming up for air...
Hi My loveliest family and friends.
I only have twenty minutes to write this post before I'm sent back to la-la land. The last twenty-four hours has been challenging to say the least.
Last night, I received news from my nurse that a yeast infection has been detected in my blood and the doctor was coming right in. A new IV and sub-q line was run and we waited only ten minutes. The doctor explained that that yeast that lives in everyone's body has just bloomed and started in my blood. What they were uncertain of was whether it was only in my central line (where they primarily pull blood) or through out my whole body. In the end, on only real option was to pull out the line and start broad rand anti-fungals.
This is news is dreaded by every patient. While a fungal affection doesn't affect the transplanted cell themselves, it can cause enough damage to major organs to cause death. They are notoriously hard to get rid off.
Panicked and upset, I signed my consent. The doctor gave me a little sedative, waited thirty seconds, took out the stitches and pulled out the en-grafted line. I had nurses and Auntie Linda surrounding my bed but I don't remember much about the procedure.
Auntie Linda didn't leave until 11:30 pm last night and bless her heart has been with me all day.
I remember waking up several hours later fearful and unsure. A poor nurse had a hard time talking me down. Likely a combination of waking from sedation and extreme stress.
This morning I woke up feeling like a zombie. Everything hurt and I felt like I had been hit by an emotional mac truck. We changed my meds over to a continuous narcotic which I can add my own doses as needed. While this has been wonderful for the anxiety and pain (the mouth pain is horrid right now), also left me in a state of complete stupidity and non-functioning. Linda has pictures of me with a spoon of food half-way to my mouth but I'm completely asleep. My narcotic world and this world have nothing to do with one another. I always have to ask what I've said or what we are talking about.
Despite this, Linda set me about my normal day trying to get me to do normal things. Very difficult with a completely stoned person.
As well, my CT scan came back showing fluid on my lungs. I can tell. The volume on my breathing machine keeps showing a more and reduced race. Walking and deep breathing helps and so I continue to attempt that.
I tell you all this so that your not all worried about why I'm posting or answering emails, FB messages or phone calls. Linda has doing all the talking or fielding.
Two good things came out of today.
1.the first set my peripheral blood cultures is negative. Translation, in the early reporting from the blood taken from my body, NOT, the central line does not show the infection. We may have taken the line out in time to save my organs. The next couple of days will be nail-biting as we wait for the next results.
2. The nurses today how well I'm doing for my stages of transplant. They said many patients roll into the drug induced fetal position for three days. They are very happy will my focus, humour and determination. This encouragement is huge as it takes a tremendous amount of energy and will just to go to the bathroom. I truly credit this to Linda's support.
The nurses are back to put me into a haze. The anti-fungals need a lot of pre-meds and I need a lot of pain killers to take the premeds. I love you all so, so much. Keep on trucking with anything hard you have to do. I'm with you in spirit.
Hugs and love
E
I only have twenty minutes to write this post before I'm sent back to la-la land. The last twenty-four hours has been challenging to say the least.
Last night, I received news from my nurse that a yeast infection has been detected in my blood and the doctor was coming right in. A new IV and sub-q line was run and we waited only ten minutes. The doctor explained that that yeast that lives in everyone's body has just bloomed and started in my blood. What they were uncertain of was whether it was only in my central line (where they primarily pull blood) or through out my whole body. In the end, on only real option was to pull out the line and start broad rand anti-fungals.
This is news is dreaded by every patient. While a fungal affection doesn't affect the transplanted cell themselves, it can cause enough damage to major organs to cause death. They are notoriously hard to get rid off.
Panicked and upset, I signed my consent. The doctor gave me a little sedative, waited thirty seconds, took out the stitches and pulled out the en-grafted line. I had nurses and Auntie Linda surrounding my bed but I don't remember much about the procedure.
Auntie Linda didn't leave until 11:30 pm last night and bless her heart has been with me all day.
I remember waking up several hours later fearful and unsure. A poor nurse had a hard time talking me down. Likely a combination of waking from sedation and extreme stress.
This morning I woke up feeling like a zombie. Everything hurt and I felt like I had been hit by an emotional mac truck. We changed my meds over to a continuous narcotic which I can add my own doses as needed. While this has been wonderful for the anxiety and pain (the mouth pain is horrid right now), also left me in a state of complete stupidity and non-functioning. Linda has pictures of me with a spoon of food half-way to my mouth but I'm completely asleep. My narcotic world and this world have nothing to do with one another. I always have to ask what I've said or what we are talking about.
Despite this, Linda set me about my normal day trying to get me to do normal things. Very difficult with a completely stoned person.
As well, my CT scan came back showing fluid on my lungs. I can tell. The volume on my breathing machine keeps showing a more and reduced race. Walking and deep breathing helps and so I continue to attempt that.
I tell you all this so that your not all worried about why I'm posting or answering emails, FB messages or phone calls. Linda has doing all the talking or fielding.
Two good things came out of today.
1.the first set my peripheral blood cultures is negative. Translation, in the early reporting from the blood taken from my body, NOT, the central line does not show the infection. We may have taken the line out in time to save my organs. The next couple of days will be nail-biting as we wait for the next results.
2. The nurses today how well I'm doing for my stages of transplant. They said many patients roll into the drug induced fetal position for three days. They are very happy will my focus, humour and determination. This encouragement is huge as it takes a tremendous amount of energy and will just to go to the bathroom. I truly credit this to Linda's support.
The nurses are back to put me into a haze. The anti-fungals need a lot of pre-meds and I need a lot of pain killers to take the premeds. I love you all so, so much. Keep on trucking with anything hard you have to do. I'm with you in spirit.
Hugs and love
E
Hi, This is Linda
Good morning. Elizabeth wanted me to introduce myself. I am Elizabeth's aunt from Chilhowie, Virginia USA. I am Michael s' sister. I came up to see if I could be of any help to Elizabeth and her family during the time of the transplant. I am currently spending the days with Elizabeth and nights in a beautiful apartment very close by. It has been a joy to be with Elizabeth and catch up on her life. I do wish it was under better circumstances.
Elizabeth is such a wonderful person. And during this ordeal she has been extremely strong, she has amazed me-over and over. She pushes herself to get better for the ones she loves and a new life of health and energy.
She is having good days and bad days as to be expected. But she pushes right through the pain, problems and aggravation.
I have 3 grown children and 6 2/3 grand-kids who are the light of my life. My son, Scott has Nick (16) and Callie (14) and is married to Sandra. Dennis and his wife, Missy have Aaron (17 and about to graduate), Alex (13) and Sophie (6). Lora is mom to Mason (6) and is expecting another boy around the first week in August. I am truly blessed!
Michael is my younger brother by 13 years. We have a sister who lives in Virginia and is 15 years my junior. Our brother David passed away several years ago. Mom also lives close by in VA and wishes that Michael and his family were hundreds of miles closer!! So do I, but I understand why they love it here. It is beautiful!
We will try to keep you updated with her progress. And appreciated your thoughts, prayers and good wishes.
God Bless.
Elizabeth is such a wonderful person. And during this ordeal she has been extremely strong, she has amazed me-over and over. She pushes herself to get better for the ones she loves and a new life of health and energy.
She is having good days and bad days as to be expected. But she pushes right through the pain, problems and aggravation.
I have 3 grown children and 6 2/3 grand-kids who are the light of my life. My son, Scott has Nick (16) and Callie (14) and is married to Sandra. Dennis and his wife, Missy have Aaron (17 and about to graduate), Alex (13) and Sophie (6). Lora is mom to Mason (6) and is expecting another boy around the first week in August. I am truly blessed!
Michael is my younger brother by 13 years. We have a sister who lives in Virginia and is 15 years my junior. Our brother David passed away several years ago. Mom also lives close by in VA and wishes that Michael and his family were hundreds of miles closer!! So do I, but I understand why they love it here. It is beautiful!
We will try to keep you updated with her progress. And appreciated your thoughts, prayers and good wishes.
God Bless.
Saturday, May 3, 2014
Day 8
Day 8 went very well. Poor Linda wasn't able to make it it but I managed fine.
The ATG went very well with only a slight itchy rash towards the end.
I also got some red blood and that perked me up.
I was also able to walk some and eat a bit of breakfast and the bed got changed.
May not sound like much but truly it was a great day.
I have always been interested in the simpler ways of living. You know, having less, enjoying more, being grateful for the simpler things of life. I think God is chuckling as I write this post. He gave me what I wanted LoL
But truly, he has given me the task and pleasure to reach into everyday and find something to write or think about that is a silver lining to the clouds.
So this morning already, as I write my post, I am almost to the bottom of a 175 gram yoghurt which meets one of my goals today and gives me some good nutrishment. I am grateful.
Hugs and kisses and hopefully a post from my Aunt later today,
E
The ATG went very well with only a slight itchy rash towards the end.
I also got some red blood and that perked me up.
I was also able to walk some and eat a bit of breakfast and the bed got changed.
May not sound like much but truly it was a great day.
I have always been interested in the simpler ways of living. You know, having less, enjoying more, being grateful for the simpler things of life. I think God is chuckling as I write this post. He gave me what I wanted LoL
But truly, he has given me the task and pleasure to reach into everyday and find something to write or think about that is a silver lining to the clouds.
So this morning already, as I write my post, I am almost to the bottom of a 175 gram yoghurt which meets one of my goals today and gives me some good nutrishment. I am grateful.
Hugs and kisses and hopefully a post from my Aunt later today,
E
Friday, May 2, 2014
The difference a few hours makes....
Yesterday was not a stellar day. It ranked down then as one of the worst here. When I asked my Auntie what was positive about the day, she said "Well, no more morphine to make you nauseated And you got half a yoghurt down." LOL
Unfortunately, it was a day full of pain, fatique and occasional bouts of nausea.
At one point, I tried to roll over and get up at the same time. I felt as though someone had punched me in the back and chest at the same time in the same place. I couldn't breathe. The nurse was not happy. He kept checking me over and over and eventually ran heart attack blood work and an ECG. The results came back clear, thank goodness. But the resulting mess of my GI pain and this added, I couldn't move inches without groaning.
But you see everything always works out OK! My brilliant nurse packed me with hot pads and blankets throughout the night. Because of her, I can move my shoulder slowly, without much negative effect.
Also my Auntie advocated to get me off the morphine. Instead we got a related product. It works well and leaves me drowsy at the worst.
Today, I feel much better. And today we are doing another round of ATG. You may remember that this is the rabbit immunosuppression. I have signed up for a research project that applied an extra day of ATG on day 8. Past studies have shown that this has reduced GVHD from 40% to 24%, I have the blood markers of someone who will likely get GVHD. I am excited that this extra step is available. Some patients need GVHD to kill their disease but AA is not one of them.
I'll sign off for nowbith hugs and love,
E
Unfortunately, it was a day full of pain, fatique and occasional bouts of nausea.
At one point, I tried to roll over and get up at the same time. I felt as though someone had punched me in the back and chest at the same time in the same place. I couldn't breathe. The nurse was not happy. He kept checking me over and over and eventually ran heart attack blood work and an ECG. The results came back clear, thank goodness. But the resulting mess of my GI pain and this added, I couldn't move inches without groaning.
But you see everything always works out OK! My brilliant nurse packed me with hot pads and blankets throughout the night. Because of her, I can move my shoulder slowly, without much negative effect.
Also my Auntie advocated to get me off the morphine. Instead we got a related product. It works well and leaves me drowsy at the worst.
Today, I feel much better. And today we are doing another round of ATG. You may remember that this is the rabbit immunosuppression. I have signed up for a research project that applied an extra day of ATG on day 8. Past studies have shown that this has reduced GVHD from 40% to 24%, I have the blood markers of someone who will likely get GVHD. I am excited that this extra step is available. Some patients need GVHD to kill their disease but AA is not one of them.
I'll sign off for nowbith hugs and love,
E
Thursday, May 1, 2014
Elizabeth in Wonderland
Tonight I had a strange, Alice in Wonderland experience.
My GI tract pain was rearing its ugly head last night. I was using more morphine through a PCA than I normally would at night. Not sleeping is starting to get to me and I wanted to make sure that I was feeling good for tomorrow morning. Morphine also has a natural drowsing affect on the body.
I drifted off tonight with help from the extra morphone and gravol which was hung by IV while I slept. About an hour and one half later, I was sitting up in bed, crying, while mentally adding up the details of my life. I had forgotten who I was.
In my morphine dreams, I was very clearing waiting for someone. There was a lot of pink. As I was waiting. I kept nodding off, returning in a dream to a hospital room. I sat up in my dream and wondered who I was and why i was in this prison room in my dreams.
And then it for a few moments. I could not have honestly told you which reality was my own and which the dream.
It was frightening to say the least. I even had to check my phones calendar for events that would prove which one was real.
Then it dawned on me that I could be losing my sanity. That these chemo drugs might be damaging my brain, changing me or that the stress would send my mental health coping abilities into a spiral.
My lovely night nurse (who has been with me for a while now) said these dreams are not uncommon. The combination of lack of sleep and the higher doses of drugs were giving me intenes dreams. Knowing me of course, I had to confirm all this online.
So I'm thankful once again to know my mental health is in tact and have gained a renewed respect for drugs and the sensitivity of my body.
Elizabeth in Wonderland is happy to awaken, even though not under a tree. And so is that person from my dreams. I was not pleased having to wait so long .
Hugs and love,
E
My GI tract pain was rearing its ugly head last night. I was using more morphine through a PCA than I normally would at night. Not sleeping is starting to get to me and I wanted to make sure that I was feeling good for tomorrow morning. Morphine also has a natural drowsing affect on the body.
I drifted off tonight with help from the extra morphone and gravol which was hung by IV while I slept. About an hour and one half later, I was sitting up in bed, crying, while mentally adding up the details of my life. I had forgotten who I was.
In my morphine dreams, I was very clearing waiting for someone. There was a lot of pink. As I was waiting. I kept nodding off, returning in a dream to a hospital room. I sat up in my dream and wondered who I was and why i was in this prison room in my dreams.
And then it for a few moments. I could not have honestly told you which reality was my own and which the dream.
It was frightening to say the least. I even had to check my phones calendar for events that would prove which one was real.
Then it dawned on me that I could be losing my sanity. That these chemo drugs might be damaging my brain, changing me or that the stress would send my mental health coping abilities into a spiral.
My lovely night nurse (who has been with me for a while now) said these dreams are not uncommon. The combination of lack of sleep and the higher doses of drugs were giving me intenes dreams. Knowing me of course, I had to confirm all this online.
So I'm thankful once again to know my mental health is in tact and have gained a renewed respect for drugs and the sensitivity of my body.
Elizabeth in Wonderland is happy to awaken, even though not under a tree. And so is that person from my dreams. I was not pleased having to wait so long .
Hugs and love,
E
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