I know it has been some time since my last post. I haven't forgotten the blog or you. I just couldn't bring myself to write.
I have been dealing with a difficult bout of depression. Too much bad news, too much grief layered in with too many appointments and procedures. I'm fatuiged .
To add to the troubles, I have recently found out that I have a growth behind my nose. I have to see an ear, nose and throat cancer specialist for that.
While the news of the recession of the lymphoma has been a true blessing, it turns out I'm not actually in remission. That was a misunderstanding on my part. Because I still have the virus in my body and some lymph nodes, I still have PTLD, and it can flare up at any time.
On the bone marrow front, we have no movement on the counts so I continue to have three days a week of blood support at the Cross.
I'm struggling with how to make this new reality into a life. I don't feel like I can go on in suspension waiting for the the marrow to do something.
I am still a mother and a wife yet I can't care for my family in the same way. I'm not sure what the new way will look like. I want to be productive and useful yet I'm reduced to being a drain on the system.
Is a person's life worth more than the roles the occupy or what they can produce?
I believe so. Every human life has value. Mine does too. I just have to start believing it. And I guess I have to get over myself and work within my new limitations.
Only time will tell how this will play out
Saturday, October 25, 2014
Friday, September 26, 2014
Miracles do happen
Well I got my own miracle, thank God.
My viral levels have come down to 24 000. The nodes have shrunk.
U
This means I'm out of immediate danger. I'm in remission!
And it happened on its own. There was no treatment that did this.
The doctors are attributing it to a few stray T-cells from my top up.
I don't know but I'm not fighting lymphoma right now. I'm very grateful.
Thankyou for all your prayers and good wishes.
Lots of love,
E
My viral levels have come down to 24 000. The nodes have shrunk.
U
This means I'm out of immediate danger. I'm in remission!
And it happened on its own. There was no treatment that did this.
The doctors are attributing it to a few stray T-cells from my top up.
I don't know but I'm not fighting lymphoma right now. I'm very grateful.
Thankyou for all your prayers and good wishes.
Lots of love,
E
Saturday, September 20, 2014
Mourning
Michael, my Dad, died yesterday morning. An unexpected surgery led to septic shock. He didn't make it.
What words can I write?
I can't find any.
I'm so sad.
What words can I write?
I can't find any.
I'm so sad.
Friday, September 12, 2014
New York
The funding for New York has been turned down on the basis of it being experimental. It's not really experimental but its in a clinical trial, hence falls under that category.
Before anyone gets too excited, I'm relieved. I spent a lot of time in contemplation and prayer yesterday searching for an answer. As my mother said, it is a most terrible decision to make. My guts strongly told me not to go to New York. But I needed to be sure its wasn't just me.
For most, the answer is clear, go do what will give you life. But the reality is not so simple. I had deep worries about my mental, emotional and physical ability to handle the trip, I have ethical concerns about the trial, and I had to consider what was best for my family.
The denial of funding was a clear no for me. I feel at peace now.
So what now?
We will prepare for end of life at home and we work towards life.
Aunt Linda is here and with my family, we are going to work on the things we can: nutrition, excerise, and enjoying my days instead of struggling through them.
The doctors are going to try to increase my blood counts to give me a better chance for my body to fight the lymphoma and potentially do more chemo.
I am creating supports that will allow me to do the things I really want:
I want to snuggle into warm blankets and laugh at silly movies with my family. I want to watch the leaves changing colours and feel the crisp fall air on my skin and the warm sun on my head. I want to watch the snowfall on Whyte Ave with a latte and my journal. I want to laugh with friends. I want to make gooey cinnamon buns. I want to fall asleep with the arms of my best friend and husband around me.
These are my dying wishes but they are my living wishes too. Because no matter if I live months or years, these are the things I love.
Along time ago, I posted a Taoist proverb "The journey is the reward". This has taken on a very different meaning for me. As I look potentially to the end of my time, the awareness of my journey and my time here now is my reward. The ability to enjoy each step, create new memories with joy and laughter, to really step into the moment. If you knew you wouldn't see the leaves change again, wouldn't you rest your eyes on them a little longer? Or let the embrace of a loved one go on just that second longer?
I am at peace and I am happy. My life is opened back up to phone calls and visitors, so don't hesitate
It is difficult to write a blog when you have no idea who is reading it. I would like to ask is if you can leave a comment here just letting me know. I have shared a most difficult part of my life on this blog, thank you for continuing to care and read.
Before anyone gets too excited, I'm relieved. I spent a lot of time in contemplation and prayer yesterday searching for an answer. As my mother said, it is a most terrible decision to make. My guts strongly told me not to go to New York. But I needed to be sure its wasn't just me.
For most, the answer is clear, go do what will give you life. But the reality is not so simple. I had deep worries about my mental, emotional and physical ability to handle the trip, I have ethical concerns about the trial, and I had to consider what was best for my family.
The denial of funding was a clear no for me. I feel at peace now.
So what now?
We will prepare for end of life at home and we work towards life.
Aunt Linda is here and with my family, we are going to work on the things we can: nutrition, excerise, and enjoying my days instead of struggling through them.
The doctors are going to try to increase my blood counts to give me a better chance for my body to fight the lymphoma and potentially do more chemo.
I am creating supports that will allow me to do the things I really want:
I want to snuggle into warm blankets and laugh at silly movies with my family. I want to watch the leaves changing colours and feel the crisp fall air on my skin and the warm sun on my head. I want to watch the snowfall on Whyte Ave with a latte and my journal. I want to laugh with friends. I want to make gooey cinnamon buns. I want to fall asleep with the arms of my best friend and husband around me.
These are my dying wishes but they are my living wishes too. Because no matter if I live months or years, these are the things I love.
Along time ago, I posted a Taoist proverb "The journey is the reward". This has taken on a very different meaning for me. As I look potentially to the end of my time, the awareness of my journey and my time here now is my reward. The ability to enjoy each step, create new memories with joy and laughter, to really step into the moment. If you knew you wouldn't see the leaves change again, wouldn't you rest your eyes on them a little longer? Or let the embrace of a loved one go on just that second longer?
I am at peace and I am happy. My life is opened back up to phone calls and visitors, so don't hesitate
It is difficult to write a blog when you have no idea who is reading it. I would like to ask is if you can leave a comment here just letting me know. I have shared a most difficult part of my life on this blog, thank you for continuing to care and read.
Wednesday, September 10, 2014
And the rest of it...
Michael was unable to finish the previous post but he got most everything in.
The decision to go to New York is difficult. It turns out the trial is 12 weeks away from home. Another three months away from my family for a treatment that may or may not work.
I don't want to die there either. I'm still trucking along but the lymphoma can rapidly get worse. I want to be at home surrounded by my family if and when I go. Besides I'm frugal....bringing a body home is very expensive.
If the funding is not provided by Alberta Health Care, the decision is easily made. We cannot afford 12 weeks in New York. Between flights, accommodation and paying for blood products, the costs would be astronomical. We will find out Friday about the funding.
The chemo options that Michael mentioned are not at all good options and I would not bother considering them.
So if the trial is a no go, we are essentially preparing for home care and palliative care. I think everyone is still hoping for a miracle.
Most days my body tells me the fight isn't over. It continues to keep going and slowly recover all the issues from the transplant. Odd that my body is busy repairing damage and yet I'm fighting an aggressive cancer. Why does the body put energy into hair when it needs to put energy into making T-cells to fight this?
Anyway, I don't think this is over. For now I'm in the hospital on a precautionary basis. I hope to be out in a couple of days and we will go from there.
So let's end with happy news.
My Aunt Linda is coming back to care for me. This will really take a burden off Mom and Linda is good at setting goals for me and helping me get there. I've missed her greatly.
I have wedding pictures back and we have some lovely ones. Here are just a couple.
End of the day and we are still smiling.
Wedding party in front of the church
Cake cutting at the beautiful reception my mother hosted.
Send love and hugs as usual.
E
The decision to go to New York is difficult. It turns out the trial is 12 weeks away from home. Another three months away from my family for a treatment that may or may not work.
I don't want to die there either. I'm still trucking along but the lymphoma can rapidly get worse. I want to be at home surrounded by my family if and when I go. Besides I'm frugal....bringing a body home is very expensive.
If the funding is not provided by Alberta Health Care, the decision is easily made. We cannot afford 12 weeks in New York. Between flights, accommodation and paying for blood products, the costs would be astronomical. We will find out Friday about the funding.
The chemo options that Michael mentioned are not at all good options and I would not bother considering them.
So if the trial is a no go, we are essentially preparing for home care and palliative care. I think everyone is still hoping for a miracle.
Most days my body tells me the fight isn't over. It continues to keep going and slowly recover all the issues from the transplant. Odd that my body is busy repairing damage and yet I'm fighting an aggressive cancer. Why does the body put energy into hair when it needs to put energy into making T-cells to fight this?
Anyway, I don't think this is over. For now I'm in the hospital on a precautionary basis. I hope to be out in a couple of days and we will go from there.
So let's end with happy news.
My Aunt Linda is coming back to care for me. This will really take a burden off Mom and Linda is good at setting goals for me and helping me get there. I've missed her greatly.
I have wedding pictures back and we have some lovely ones. Here are just a couple.
Drinking from our red neck wine glasses courtesy of my cousin!
Cake cutting at the beautiful reception my mother hosted.
Send love and hugs as usual.
E
Biopsy Results
Despite the communication gurus, I don't think there is a good way to pass along bad news. This week's news is not as bad as it could be, but it's bad enough.
The chemo Elizabeth has been getting is for a particular type of PTLD. The results from the biopsy show that her lymphoma is a different type which doesn't respond to her treatment.
There are a few treatment options left. One is a transfusion of T cells from the original donor. Unfortunately, the donor had pulled out of the program.
There's a similar treatment in clinical trial at Sloan-Kettering in New York. It's for people who can't use the original donor's T cells. She has been accepted, but she has to cover travel, lodging and other medical expenses. There are funds available from the province, but she has to go through the approval province. This takes time, and that is in short supply.
If these options don't work, they can give her a modified version of a full chemo treatment. She's not strong enough to handle the full dosage.
Friday, August 29, 2014
Lots to be happy for.....
David's birthday today!
Wedding tomorrow!
What a whirlwind!
David has some time off now so we have been able to spend lovely time with our families.
Treatment has gone well this week and we saw another, though smaller, reduction in the viral counts.
I just need to get rid of these migraines and I will be set.
Its been nice to be busy this week. It hasn't allowed me to think too much. It also gives me purpose for each day. That's a nice change.
Next week is busy still with family and three straight days at the hospital so if I don't get wedding pictures up right away, no worries.
Have a great weekend!
E
Wedding tomorrow!
What a whirlwind!
David has some time off now so we have been able to spend lovely time with our families.
Treatment has gone well this week and we saw another, though smaller, reduction in the viral counts.
I just need to get rid of these migraines and I will be set.
Its been nice to be busy this week. It hasn't allowed me to think too much. It also gives me purpose for each day. That's a nice change.
Next week is busy still with family and three straight days at the hospital so if I don't get wedding pictures up right away, no worries.
Have a great weekend!
E
Wednesday, August 27, 2014
1:45 am and I can't sleep. Too much steroid today but it creates a great time to catch up on emails and the blog.
The last week has been crazy as you might expect. Appointments everyday at the Cross. I've had a PICC line put in to save me crying every time I have to get an iv, biopsy done, treatments, blood, CT scans and on and on..
Mom has been amazing driving me to every appointment and on my days off, she brings me to her house so I don't have to be alone. And she is doing this on top of preparing and cooking the reception for the wedding.
Neighbours and friends have dropped off delicious meals and the offers to help. People I don't know are offering to help. Its amazing.
Some positive news is that last week, my viral loads came down so hopefully the ritux is starting to work. Also the CT scan showed no increase in lymphoma and may show some dying lymph nodes. I'm praying this is the case.
As you would imagine, I'm walking the path of being scared out of my mind, exhausted and back to the surety of good health. Its a rollercoaster and some days I'm not so graceful how I handle it. Some days I'm amazed by my resilience.
Madeleine is starting some art therapy which I think she will enjoy. It will give her a nice place to be a kid. The lady has some fun projects and storytelling abilities.
Family is starting to arrive for the wedding. It will be lovely and hopefully not too tiring.
Sending love and hugs,
E
The last week has been crazy as you might expect. Appointments everyday at the Cross. I've had a PICC line put in to save me crying every time I have to get an iv, biopsy done, treatments, blood, CT scans and on and on..
Mom has been amazing driving me to every appointment and on my days off, she brings me to her house so I don't have to be alone. And she is doing this on top of preparing and cooking the reception for the wedding.
Neighbours and friends have dropped off delicious meals and the offers to help. People I don't know are offering to help. Its amazing.
Some positive news is that last week, my viral loads came down so hopefully the ritux is starting to work. Also the CT scan showed no increase in lymphoma and may show some dying lymph nodes. I'm praying this is the case.
As you would imagine, I'm walking the path of being scared out of my mind, exhausted and back to the surety of good health. Its a rollercoaster and some days I'm not so graceful how I handle it. Some days I'm amazed by my resilience.
Madeleine is starting some art therapy which I think she will enjoy. It will give her a nice place to be a kid. The lady has some fun projects and storytelling abilities.
Family is starting to arrive for the wedding. It will be lovely and hopefully not too tiring.
Sending love and hugs,
E
Thursday, August 21, 2014
Lymphoma
The doctors are treating me for PTLD, a rare form of lymphoma. We have no confirmed biopsy but it matters little at this point. PTLD can be very aggressive taking a person in weeks. I am still receiving ritux but they can't give me the other chemo, its more dangerous. There is a trial in New York they will try to get me on. The ritux has reduced my viral loads some which is good. I am in treatment at the Cross Cancer three days a week.
I'm walking the line between preparing and choosing life....not easy.
My family is shattered of course as am I but I have survived rare and deadly things before so they are holding onto hope.
I lay out boundaries here because it is what I can do for my family right now. Emails, Facebook messages and texts are all welcome. Phone calls we can't do right now. Visits are unlikely. I will do my best to answer everyone but please understand if I don't.
Madeleine doesn't know this can be deadly just that I may become very sick. Please do not treat her any differently. She needs the stability and security of the adults around her not falling apart. She needs the regular dose of life as long as I can give it to her. She is strong and will deal with what comes. Please respect me on this if you happen to see her!
David and Josh are dealing with this in their own way and all I ask is that you let them without interfering on their private thoughts and feelings. There will plenty of time for commiseration if I go.
Meals are welcome and thankyou in advance. David still doesn't like veggies and beans are hard for some of my family to deal with. Flowers are not allowed but I welcome pictures on my phone of lovely gardens and bouquets.
Now for good news: David and I will be married within a week or so. Our family members are all coming. It will be a tiny wedding to celebrate our life together and our love. I know you all understand that I wanted to invite a big crowd but the situation calls for restraint. I have a dress and David has a suit and I post pictures after in September. I am excited and looking forward to this day very much.
I don't know if this is my last post....it is not my intent as I will not give up but that said..... Thankyou for following my blog and caring and loving and praying as you have. It has meant the world to me. You got me through many hard days. I'm sending each one of you my love whether I know you or not. Find your gift and share it with the world. Accept each other and be compassionate. Many blessings be upon you for whatever comes.
Until my next post, all my love and hugs,
E
I'm walking the line between preparing and choosing life....not easy.
My family is shattered of course as am I but I have survived rare and deadly things before so they are holding onto hope.
I lay out boundaries here because it is what I can do for my family right now. Emails, Facebook messages and texts are all welcome. Phone calls we can't do right now. Visits are unlikely. I will do my best to answer everyone but please understand if I don't.
Madeleine doesn't know this can be deadly just that I may become very sick. Please do not treat her any differently. She needs the stability and security of the adults around her not falling apart. She needs the regular dose of life as long as I can give it to her. She is strong and will deal with what comes. Please respect me on this if you happen to see her!
David and Josh are dealing with this in their own way and all I ask is that you let them without interfering on their private thoughts and feelings. There will plenty of time for commiseration if I go.
Meals are welcome and thankyou in advance. David still doesn't like veggies and beans are hard for some of my family to deal with. Flowers are not allowed but I welcome pictures on my phone of lovely gardens and bouquets.
Now for good news: David and I will be married within a week or so. Our family members are all coming. It will be a tiny wedding to celebrate our life together and our love. I know you all understand that I wanted to invite a big crowd but the situation calls for restraint. I have a dress and David has a suit and I post pictures after in September. I am excited and looking forward to this day very much.
I don't know if this is my last post....it is not my intent as I will not give up but that said..... Thankyou for following my blog and caring and loving and praying as you have. It has meant the world to me. You got me through many hard days. I'm sending each one of you my love whether I know you or not. Find your gift and share it with the world. Accept each other and be compassionate. Many blessings be upon you for whatever comes.
Until my next post, all my love and hugs,
E
Saturday, August 16, 2014
Comforts
Yesterday went well. They moved my Ritux treatment to the Cross Cancer Clinic here in Edmonton. That alone saves me two trips to Calgary. I was stuck in an isolation room because of a new infection they discovered (yes, another one!). Its not so bad except there is no bathroom, I got a commode instead...not my favourite.
After my treatment, I headed off to the bedding store and spent too much money. New Egyptian cotton sheets, new bedspread, new pillows and then I decided the kids needed sheets too. But somehow, having a coupon made me feel better....it could have been more, right?
The point of telling you all this is the pleasure something unexpected can bring. I woke up under the new sheets and bedspread. The soft, worn denim, coral and tan colours wrapped me in comfort like a well worn pair of jeans and flannel shirt. The bed just said, "Stay awhile, nothing better to get too." Today is the day to stay in bed. Ritux makes me feel flu-like and sore the day after and I woke up feeling distinctly like I needed a hug.
So I cuddled back down and listened to "Brave" by Sarah Bareilles, cried a little and felt a bit stronger for the day.
One of my most hated things to hear in Calgary was "One day at a time." Someone once described me as moving like locomotive and pulling everyone along with me. Its true. Partly, if I slow down or stop, I'm afraid I won't get going again. Partly, it's trying to outrun the wolves nipping at my ankles as if I can outrun my destiny. But now, I think that is changing. I feel myself starting to slow down. Maybe the physical aspects are starting to hold me back. Maybe I'm starting to realize I can't live life very well at 200 miles/hr. Either way, it's different. Maybe it will accomplish some positive changes.
After this post, I'm going to put up links to the Sarah Bareilles song and to a beautiful video that my friend, Cathy sent me. Enjoy!
After my treatment, I headed off to the bedding store and spent too much money. New Egyptian cotton sheets, new bedspread, new pillows and then I decided the kids needed sheets too. But somehow, having a coupon made me feel better....it could have been more, right?
The point of telling you all this is the pleasure something unexpected can bring. I woke up under the new sheets and bedspread. The soft, worn denim, coral and tan colours wrapped me in comfort like a well worn pair of jeans and flannel shirt. The bed just said, "Stay awhile, nothing better to get too." Today is the day to stay in bed. Ritux makes me feel flu-like and sore the day after and I woke up feeling distinctly like I needed a hug.
So I cuddled back down and listened to "Brave" by Sarah Bareilles, cried a little and felt a bit stronger for the day.
One of my most hated things to hear in Calgary was "One day at a time." Someone once described me as moving like locomotive and pulling everyone along with me. Its true. Partly, if I slow down or stop, I'm afraid I won't get going again. Partly, it's trying to outrun the wolves nipping at my ankles as if I can outrun my destiny. But now, I think that is changing. I feel myself starting to slow down. Maybe the physical aspects are starting to hold me back. Maybe I'm starting to realize I can't live life very well at 200 miles/hr. Either way, it's different. Maybe it will accomplish some positive changes.
After this post, I'm going to put up links to the Sarah Bareilles song and to a beautiful video that my friend, Cathy sent me. Enjoy!
Friday, August 15, 2014
Update for this week
Mom and I headed down early to Calgary. The doctors wanted me closer as I had a fever Monday night and the swelling on my neck keeps going up and down. I received the next infusion of Ritux, blood, platelets and finally, very late at night, I received the cellular boost. They received a good cell dose count so hopefully, those stem cells will fill up my bone marrow.
I found out why the doctors are so worried about the Epstein Barr virus. At my current viral levels, 40% of cases become lymphoma. I have some swollen glands and lymph nodes now which is causing nasty headaches and numbness on the side of my head. A CT scan was done and they found some in my lungs as well but those ones are small. If my counts keep climbing over four million, the percentage of lymphoma cases becomes 70%.
Ritux is the first line of defense as well as reducing immunosuppressive therapy. Both are being done.
Its difficult to think that after all this, I may have to face a cancer as well. So I believe my brain has decided to stop thinking. It's too much. I did have a cry yesterday but today I feel relatively calm and peaceful. I went out for a walk to enjoy the morning air. I read some, got ready for the day and later I will go get some new bedding. I'm generally taking the day slowly.
I think there is a sense of resignation, not giving up, mind you, but resignation. Shit will either happen or not happen. At this point, there is nothing I can do about it. We all have limited time on this planet. Whatever time I have left, decades...years...months, I don't want to regret not enjoying the time. I don't want to live my life in fear and anxiety.
The path in front of me has diverged into many possibilities. Only God knows which path I'll end up walking. May he walk beside me and keep me from harm.
I found out why the doctors are so worried about the Epstein Barr virus. At my current viral levels, 40% of cases become lymphoma. I have some swollen glands and lymph nodes now which is causing nasty headaches and numbness on the side of my head. A CT scan was done and they found some in my lungs as well but those ones are small. If my counts keep climbing over four million, the percentage of lymphoma cases becomes 70%.
Ritux is the first line of defense as well as reducing immunosuppressive therapy. Both are being done.
Its difficult to think that after all this, I may have to face a cancer as well. So I believe my brain has decided to stop thinking. It's too much. I did have a cry yesterday but today I feel relatively calm and peaceful. I went out for a walk to enjoy the morning air. I read some, got ready for the day and later I will go get some new bedding. I'm generally taking the day slowly.
I think there is a sense of resignation, not giving up, mind you, but resignation. Shit will either happen or not happen. At this point, there is nothing I can do about it. We all have limited time on this planet. Whatever time I have left, decades...years...months, I don't want to regret not enjoying the time. I don't want to live my life in fear and anxiety.
The path in front of me has diverged into many possibilities. Only God knows which path I'll end up walking. May he walk beside me and keep me from harm.
Sunday, August 10, 2014
Complications
We are still good to go with the cell boost but the current problem is the viruses re-activating in my body. I still have the Adenovirus active and its causing bleeding in the bladder now. But the one that is most concerning right now is the Epstein Barr virus. The viral counts have significantly increased and I'm getting the symptoms of mononucleosis.
You may remember that this is the virus that they believe caused the aplastic anemia in the first place. So not good! The doctor is quite worried and she has started another chemotherapy agent. The drug attacks my B cells (part of my immune system) in hopes of killing the virus housed inside. The total bill for the treatment $20 000 for four infusions. Thank goodness its being covered however I have to go to Calgary for it.
I find the constant worry exhausting. I don't feel like I can restore my emotional reserves without being hit by something new. And I'm scared. We are in a race to get this cell boost working before one of these viruses or a new one gets me.
People often offer platitudes about how we all go sometime and nobody know when their end is. Absolutely true BUT I don't want to die and these viruses could stop my heart and shut down my organs. I've been down that road in ICU, once is enough. How does a person live a normal life and enjoy the moments while feeling like shit and constantly walking in the shadow of the Reaper?
I see the constant worry in my families faces and it pisses me off that I'm the cause of it. My job is to care for them and I can't. But while we are on the Subject, I want to say a huge thanks to my family for caring for me particularly my mom. She is doing overtime cooking for us, driving me everywhere, caring for Madeleine, and accompanying me to Calgary every week. How do you repay such kindness?
I'll post more on Thursday after the cell boost.
You may remember that this is the virus that they believe caused the aplastic anemia in the first place. So not good! The doctor is quite worried and she has started another chemotherapy agent. The drug attacks my B cells (part of my immune system) in hopes of killing the virus housed inside. The total bill for the treatment $20 000 for four infusions. Thank goodness its being covered however I have to go to Calgary for it.
I find the constant worry exhausting. I don't feel like I can restore my emotional reserves without being hit by something new. And I'm scared. We are in a race to get this cell boost working before one of these viruses or a new one gets me.
People often offer platitudes about how we all go sometime and nobody know when their end is. Absolutely true BUT I don't want to die and these viruses could stop my heart and shut down my organs. I've been down that road in ICU, once is enough. How does a person live a normal life and enjoy the moments while feeling like shit and constantly walking in the shadow of the Reaper?
I see the constant worry in my families faces and it pisses me off that I'm the cause of it. My job is to care for them and I can't. But while we are on the Subject, I want to say a huge thanks to my family for caring for me particularly my mom. She is doing overtime cooking for us, driving me everywhere, caring for Madeleine, and accompanying me to Calgary every week. How do you repay such kindness?
I'll post more on Thursday after the cell boost.
Wednesday, August 6, 2014
Cellular boost
Here is the latest news....thankfully all good!
1. The chimerism studies came back and the bone marrow I do have is 100% donor. This means its not graft failure but likely a mechanism of me being transfusion dependant and serum antibodies. It essentially tells us no more chemo!
2. The donor has agreed to more stem cell donation. We are going ahead with the top up next Wednesday. It will be an outpatient procedure done in an afternoon with two IVs. It will be done in Calgary as well.
3. I'm finally coming off prednisone as there is still no sign of GVHD. Maybe I can get some sleep now.
4. My wbc and neutraphils came up from last week. I'm still neutropenic but not as badly.
The top up will likely take some months to work. AA patients are notoriously slow to respond but they do feel it will work. Its hard to get super excited because I don't want to get my hopes too high. At this point, however, this is the best news we could receive.
Fingers crossed everyone!
1. The chimerism studies came back and the bone marrow I do have is 100% donor. This means its not graft failure but likely a mechanism of me being transfusion dependant and serum antibodies. It essentially tells us no more chemo!
2. The donor has agreed to more stem cell donation. We are going ahead with the top up next Wednesday. It will be an outpatient procedure done in an afternoon with two IVs. It will be done in Calgary as well.
3. I'm finally coming off prednisone as there is still no sign of GVHD. Maybe I can get some sleep now.
4. My wbc and neutraphils came up from last week. I'm still neutropenic but not as badly.
The top up will likely take some months to work. AA patients are notoriously slow to respond but they do feel it will work. Its hard to get super excited because I don't want to get my hopes too high. At this point, however, this is the best news we could receive.
Fingers crossed everyone!
Friday, July 25, 2014
Thank-you
Everybody is allowed a crappy day or two to feel sorry for themselves. But there is always comes a time to get up, brush yourself off and get going.
I don't want anyone to worry. This is not the worst I've been through. There is hope with the cell boost.
David and I appreciate the outpouring of support we have received. As soon as we know more about the cell boost, I will post. We suspect it will be a couple of weeks at best.
I don't want anyone to worry. This is not the worst I've been through. There is hope with the cell boost.
David and I appreciate the outpouring of support we have received. As soon as we know more about the cell boost, I will post. We suspect it will be a couple of weeks at best.
Thursday, July 24, 2014
Sad and frustrating news
It has been awhile since I published anything. Partly because I have been so busy at home and partly because there has been nothing new to report.
Yesterday, mom and I were in Calgary to get the results of the bone marrow biopsy done last week. Here are the results:
The transplant has not worked. The inside of my bone marrow is as empty as when I went to Calgary in the first place. We aren't sure if this is graft failure (my immune system reject the donor),or if I have a very poor engraftment. The machine that runs that test is broken but I should find out in a couple of weeks.
I'm disappointed, sad, frustrated and angry. Once we initially got engraftment, I thought we were in the clear.
The doctor wants to go ahead with a top up. This would be a special top up with the immune components taken out to try and prevent Graft vs. Host disease. I may have to do more chemo, we won't know until the tests come back. If the top up doesn't work, I will be looking at another transplant with a different donor or electing to live out what life I have left with blood product support. I can't even fathom making that choice.
My hopes for the future, a pretty glass menagerie, just slid and smashed on the floor.
Yesterday, mom and I were in Calgary to get the results of the bone marrow biopsy done last week. Here are the results:
The transplant has not worked. The inside of my bone marrow is as empty as when I went to Calgary in the first place. We aren't sure if this is graft failure (my immune system reject the donor),or if I have a very poor engraftment. The machine that runs that test is broken but I should find out in a couple of weeks.
I'm disappointed, sad, frustrated and angry. Once we initially got engraftment, I thought we were in the clear.
The doctor wants to go ahead with a top up. This would be a special top up with the immune components taken out to try and prevent Graft vs. Host disease. I may have to do more chemo, we won't know until the tests come back. If the top up doesn't work, I will be looking at another transplant with a different donor or electing to live out what life I have left with blood product support. I can't even fathom making that choice.
My hopes for the future, a pretty glass menagerie, just slid and smashed on the floor.
Tuesday, July 15, 2014
Home again, home again....
Well I am back in Cowtown. I got to go home for 5 days!!!!!
My anxiety and depression with being here was getting really bad. For three straight days, I couldn't function. I kept rolling from one anxiety attack to another. When I had my doctors appointment, Michael came with me and explained to my doctor how things were not going well. She decided to sent me home on the condition that i would return for the bone marrow biopsy a week later.
I couldn't get out of here fast enough. Thankful Michael was willing to pick up and go immediately after my appointment.
It was really nice to be home. Madeleine was so happy to be back in her room with her friend next door. My neighbour helped me out on the days I wasn't well which I am hugely grateful for!
Being at home is a balm to my soul. I feel stronger now. I'm not happy about having to be in Calgary but I'm not anxious. I'm also hoping to convince my doctor to send me back home again. Madeleine is hoping for this too. She desperately wants everything to go back to normal.
Otherwise my health seems to be improving slowly. The doctor has decided I may be lactose intolerant from the chemo. It seems to help to reduce the dairy but hasn't resolved everything. Blood is still slow but maybe tomorrow we will see something good.
My anxiety and depression with being here was getting really bad. For three straight days, I couldn't function. I kept rolling from one anxiety attack to another. When I had my doctors appointment, Michael came with me and explained to my doctor how things were not going well. She decided to sent me home on the condition that i would return for the bone marrow biopsy a week later.
I couldn't get out of here fast enough. Thankful Michael was willing to pick up and go immediately after my appointment.
It was really nice to be home. Madeleine was so happy to be back in her room with her friend next door. My neighbour helped me out on the days I wasn't well which I am hugely grateful for!
Being at home is a balm to my soul. I feel stronger now. I'm not happy about having to be in Calgary but I'm not anxious. I'm also hoping to convince my doctor to send me back home again. Madeleine is hoping for this too. She desperately wants everything to go back to normal.
Otherwise my health seems to be improving slowly. The doctor has decided I may be lactose intolerant from the chemo. It seems to help to reduce the dairy but hasn't resolved everything. Blood is still slow but maybe tomorrow we will see something good.
Saturday, July 5, 2014
Back to the Calgary normal....
What a busy week!David was down for the long weekend. It was nice to spend time just the two of us and as a family when Mom and Madeleine came.
Madeleine has been having a difficult time at home. She is really missing Mom and her normal existence. But on this visit, she came for a week now that school is out.
We went on bike rides, worked on her grade two review, painted nails, painted sun-catchers and generally spent a tonne of time together. I am incredibly grateful to my mom for helping out and entertaining Madeleine when I was fatigued. But all and all, it went better than I expected. There is always some readjustment when parent and child has spent time apart but Madeleine is so eager to please, she really tried her best.
By the end of the week, she was making beds and chopping salad ingredients. She constantly ran around getting things for me. I can see she will be a huge help when I get home.
And Madeleine is eager to get home. She talks about her room, seeing her friend next door, being with her brother. She's eager for movie and pizza nights and wrestling with David. I can't say I blame her. I'm aching for all those things too. Normal life...I am worried about adjusting my expectations for home. I know what I was able to do before the transplant and mostly I just pushed through the tiredness. I'm not sure now. I can't tell if my fatigue is just boredom or if its really more from the transplant. All the material I read talks about the fatigue lasting for about a year. But I've been living with fatigue for more than a decade. I guess we can only wait and see.
In the meantime, I put on a big soup of borsht. Trying to heal my stomach to old fashioned way. Nothing like the smell of beets and dill together!
Thursday, July 3, 2014
Gratitude
I'm sitting in the clinic waiting for my platelets. Next cubicle over, a gentleman is getting his pre-transplant interview. The nurse goes through everything to expect and answers all their questions.
As I eavesdrop on their conversation, I am so grateful that I'm on this side of the transplant. I also wanted to jump in and tell him all the extras he will need to know like asking for Veronica's strawberry milkshakes.
While I still struggle with the transplant experience and the slowness of recovery, I must admit it is a miracle I'm here on the other side as healthy as I am. As the nurse talked about infections and ICU trips, I remember thinking during my interview those things wouldn't likely happen to me. But they did and more. It is a miracle that my heart has returned back to mostly normal function. That none if my organs are permanently damaged.
This journey to health has not been smooth but I'm still on the path and I'm grateful for that.
As I eavesdrop on their conversation, I am so grateful that I'm on this side of the transplant. I also wanted to jump in and tell him all the extras he will need to know like asking for Veronica's strawberry milkshakes.
While I still struggle with the transplant experience and the slowness of recovery, I must admit it is a miracle I'm here on the other side as healthy as I am. As the nurse talked about infections and ICU trips, I remember thinking during my interview those things wouldn't likely happen to me. But they did and more. It is a miracle that my heart has returned back to mostly normal function. That none if my organs are permanently damaged.
This journey to health has not been smooth but I'm still on the path and I'm grateful for that.
Friday, June 27, 2014
Urgent appeal
Canadian Blood Services is putting out an appeal for blood. Their supplies are at a five year low.
I am asking my readership to consider donating blood. I have had hundreds of units over the years and continue to receive red blood cells every two weeks. I also receive platelets every five days.
I know it takes time and yes the needle isn't fun but please consider that ten minutes of discomfort will allow someone to live another day.
Here is the Canadian Blood Services link: www.blood.ca
Thanks,
Hugs and love
E
I am asking my readership to consider donating blood. I have had hundreds of units over the years and continue to receive red blood cells every two weeks. I also receive platelets every five days.
I know it takes time and yes the needle isn't fun but please consider that ten minutes of discomfort will allow someone to live another day.
Here is the Canadian Blood Services link: www.blood.ca
Thanks,
Hugs and love
E
Weekly update
My behind is very sore. I've been sitting here in clinic for 7.5 hours getting blood, platelets and magnesium. The good news is that I'll be raring to go for the long weekend.
David is coming down tomorrow. I haven't seen him in three weeks so I'm very excited.
Madeleine is coming Monday and she will stay for a week. Its going to be busy but good for me and her.
I did try to convince the doctor to send home early but it was a no go. She is putting me on another immunosuppressant to replace the steroids. She wants that stable first. They are also watching still for GVHD and viral problems.
So I've started to red War and Peace. I figure that should amuse me for awhile.
Blood counts continue as always, not great. <sigh>. One day.....
David is coming down tomorrow. I haven't seen him in three weeks so I'm very excited.
Madeleine is coming Monday and she will stay for a week. Its going to be busy but good for me and her.
I did try to convince the doctor to send home early but it was a no go. She is putting me on another immunosuppressant to replace the steroids. She wants that stable first. They are also watching still for GVHD and viral problems.
So I've started to red War and Peace. I figure that should amuse me for awhile.
Blood counts continue as always, not great. <sigh>. One day.....
Sunday, June 22, 2014
Update for the week
This week has flown by. My best friend, Oksana came down to spend the week with me. It is been wonderful. I haven't seen her in two months and I miss our talks very much. So we have spent a lot of time with a cup of tea, yacking. The weather has been very poor so it was a nice way to pass the hours.
I have been two days in clinic this week. It is much the same procedure as upstairs in unit 57 but things are more casual. The nurses are great. As my platelets start to stabilise I will got in less and less, probably only once a week.
The blood counts have not moved much. I received a red blood transfusion on Friday but that is the first in three weeks which is good news. My white blood count and neutriphils are holding their own at 1.5 and 1.0. I'm pleased as I haven't had a shot of GCSF in about two weeks. The platelets keep falling but we are starting to inch to more time in between transfusions. I'm hoping this is showing a positive trend and not an abberation. Also the production of my baby red blood cells is in the normal range which is exciting.
Madeleine and Michael came this weekend. Both she and I are excited about spending the week together next week. Trying to visit while still parenting in one day is too difficult and stressful.
My transplant doctor is back from holidays this week and I am going to starting asking about when I can come home. I think I can make a good case for an early return. Wish me luck!!!!
Until next time, hugs and love
E
I have been two days in clinic this week. It is much the same procedure as upstairs in unit 57 but things are more casual. The nurses are great. As my platelets start to stabilise I will got in less and less, probably only once a week.
The blood counts have not moved much. I received a red blood transfusion on Friday but that is the first in three weeks which is good news. My white blood count and neutriphils are holding their own at 1.5 and 1.0. I'm pleased as I haven't had a shot of GCSF in about two weeks. The platelets keep falling but we are starting to inch to more time in between transfusions. I'm hoping this is showing a positive trend and not an abberation. Also the production of my baby red blood cells is in the normal range which is exciting.
Madeleine and Michael came this weekend. Both she and I are excited about spending the week together next week. Trying to visit while still parenting in one day is too difficult and stressful.
My transplant doctor is back from holidays this week and I am going to starting asking about when I can come home. I think I can make a good case for an early return. Wish me luck!!!!
Until next time, hugs and love
E
Tuesday, June 17, 2014
Moving on....or down in this case
Hello my friends!
I have some excellent news.
I'm moving down to the bone marrow clinic for care. YAY. It means that I will be officially discharged from hospital to an outpatient basis.
Its another step towards home.
Funnily, the ward doctor is going to follow me down there even though he doesn't have a clinic. In addition, my blood counts aren't considered stable yet either.
So why are they kicking me out? Well two answers are plausible: 1. Elizabeth is becoming a pain in their neck or 2. Elizabeth has whined enough about wanting to be discharged that they are humouring me. The third option is that its a combo of the two; this is likely.
I was reading some followup care about transplant patients. One article said the up to 75% of transplant patients experience depression. anxiety or post-tramatic stress disorder a year after transplant. Even if the numbers are inflated, that is huge! I know from my own experience, going onto the ward every day or two makes me grit my teeth, just to be there! I hate the rooms, the beds, the bathrooms particularly with their awful yellow colour. The idea of going back into hospital makes my insides shake and I get immediately nauseous. I am gleeful when I get to leave and I feel terrible for leaving behind the other inmates....I mean patients.
I told one doctor that going on passes felt like being a lab rat. The rat sees the new open door and cautiously sticks its nose out to sniff. You see the rat is worried. A bar may quickly descend or an electric shock administered. The lab techs will giggle and say "just kidding, silly little rat". She doesn't really believe that the lab coats would ever really let her go.
My transplant doctor howled with laughter when she heard my theory.
But you can see why they want to get rid if me? I think they know my mental sanity and theirs rests on moving me on. And I am grateful! Time heals many things. As I move into my new future, I hope the scars of transplant will heal and I will gain a positive perspective on my time there. After all, I met many angels working on unit 57 and I have a future which was very uncertain before.
The other piece of good news is that my guts seem to be slowly healing. Which will mean I don't have Acute Graft vs. Host disease. I don't need a barrage if uncomfortable tests or long term toxic drug treatment. We are still in the phase where I could develop it or chronic GVHD but let's knock on wood and hope for the best!
In the meantime, I'm starting to plan the last weeks here and my time returning home. Fall activities, wedding, physio in Edmonton, coming home party etc. These things keep me busy and distracted from the long days here. Finally though, I'm starting to see the light at the end of the tunnel.
I hope you are all keeping well,
Hugs and love as always,
E
I have some excellent news.
I'm moving down to the bone marrow clinic for care. YAY. It means that I will be officially discharged from hospital to an outpatient basis.
Its another step towards home.
Funnily, the ward doctor is going to follow me down there even though he doesn't have a clinic. In addition, my blood counts aren't considered stable yet either.
So why are they kicking me out? Well two answers are plausible: 1. Elizabeth is becoming a pain in their neck or 2. Elizabeth has whined enough about wanting to be discharged that they are humouring me. The third option is that its a combo of the two; this is likely.
I was reading some followup care about transplant patients. One article said the up to 75% of transplant patients experience depression. anxiety or post-tramatic stress disorder a year after transplant. Even if the numbers are inflated, that is huge! I know from my own experience, going onto the ward every day or two makes me grit my teeth, just to be there! I hate the rooms, the beds, the bathrooms particularly with their awful yellow colour. The idea of going back into hospital makes my insides shake and I get immediately nauseous. I am gleeful when I get to leave and I feel terrible for leaving behind the other inmates....I mean patients.
I told one doctor that going on passes felt like being a lab rat. The rat sees the new open door and cautiously sticks its nose out to sniff. You see the rat is worried. A bar may quickly descend or an electric shock administered. The lab techs will giggle and say "just kidding, silly little rat". She doesn't really believe that the lab coats would ever really let her go.
My transplant doctor howled with laughter when she heard my theory.
But you can see why they want to get rid if me? I think they know my mental sanity and theirs rests on moving me on. And I am grateful! Time heals many things. As I move into my new future, I hope the scars of transplant will heal and I will gain a positive perspective on my time there. After all, I met many angels working on unit 57 and I have a future which was very uncertain before.
The other piece of good news is that my guts seem to be slowly healing. Which will mean I don't have Acute Graft vs. Host disease. I don't need a barrage if uncomfortable tests or long term toxic drug treatment. We are still in the phase where I could develop it or chronic GVHD but let's knock on wood and hope for the best!
In the meantime, I'm starting to plan the last weeks here and my time returning home. Fall activities, wedding, physio in Edmonton, coming home party etc. These things keep me busy and distracted from the long days here. Finally though, I'm starting to see the light at the end of the tunnel.
I hope you are all keeping well,
Hugs and love as always,
E
Friday, June 13, 2014
Day 50
Drumroll please....
Today we are celebrating Day 50!
Halfway through (maybe more) this transplant process. Its a celebration with mixed feelings.
50 more days of being in Calgary away from my family is a hard prospect to face. I miss them terribly; they are my life. It is especially hard now because Madeleine is missing me a lot and David is very tired from not having any days to rest. I feel helpless to help them from here other than bringing Madeleine down as much as I can and not letting David come down so he can rest.
I am also facing some potential graft vs. Host issues. We are not sure what the issue is but next week, the testing will likely begin. I worry, of course, and wonder if I'm going to have to face the ill effects long term.
My emotional coping resources feel like they are dried up now. I spend a lot if time crying over things that I shouldn't. Mom has been extremely supportive. The nurse said that this is normal and there is nothing that can be done but live day by day, hour by hour.
On the brighter sqide if the coin, it is my hope that we celebrate the worst behind us. It has been a long and wild ride BUT I have bone marrow and two of the three bloodlines are holding their own. That means less likelihood of infection and I haven't needed a red blood transfusion in some time. Its a bright future and somewhere out there, is a person who gave me that future. I hope they feel my gratitude.
Also, we celebrate the incredible generosity of the family who has given us this amazing apartment by the river to live in for free. The family does this for multiple families just as a way to give back. We will never be able to repay their kindness. All they ask is that we pay it forward to someone else.
And lastly, I celebrate how incredibly blessed I am to be surrounded by supportive family and friends. I truly would not be celebrating today without all the caregiving, love and sacrifice that has been made by these people.
This journey is a mixed bag. I think all journeys are. There are things I still have to learn (can anyone say PATIENCE) and there are lessons I've got (quite a few). Some days are brilliant and I feel on top if the world. Some days, I want to curl up and let someone wake me up at the end of 100 days. But I can only trust that this journey will bring me home whole: body, soul and mind. I can only trust that there is another journey waiting for me beyond this one. So here is to 50 days fought through, laughed through and cried through!
All my love,
E
Today we are celebrating Day 50!
Halfway through (maybe more) this transplant process. Its a celebration with mixed feelings.
50 more days of being in Calgary away from my family is a hard prospect to face. I miss them terribly; they are my life. It is especially hard now because Madeleine is missing me a lot and David is very tired from not having any days to rest. I feel helpless to help them from here other than bringing Madeleine down as much as I can and not letting David come down so he can rest.
I am also facing some potential graft vs. Host issues. We are not sure what the issue is but next week, the testing will likely begin. I worry, of course, and wonder if I'm going to have to face the ill effects long term.
My emotional coping resources feel like they are dried up now. I spend a lot if time crying over things that I shouldn't. Mom has been extremely supportive. The nurse said that this is normal and there is nothing that can be done but live day by day, hour by hour.
On the brighter sqide if the coin, it is my hope that we celebrate the worst behind us. It has been a long and wild ride BUT I have bone marrow and two of the three bloodlines are holding their own. That means less likelihood of infection and I haven't needed a red blood transfusion in some time. Its a bright future and somewhere out there, is a person who gave me that future. I hope they feel my gratitude.
Also, we celebrate the incredible generosity of the family who has given us this amazing apartment by the river to live in for free. The family does this for multiple families just as a way to give back. We will never be able to repay their kindness. All they ask is that we pay it forward to someone else.
And lastly, I celebrate how incredibly blessed I am to be surrounded by supportive family and friends. I truly would not be celebrating today without all the caregiving, love and sacrifice that has been made by these people.
This journey is a mixed bag. I think all journeys are. There are things I still have to learn (can anyone say PATIENCE) and there are lessons I've got (quite a few). Some days are brilliant and I feel on top if the world. Some days, I want to curl up and let someone wake me up at the end of 100 days. But I can only trust that this journey will bring me home whole: body, soul and mind. I can only trust that there is another journey waiting for me beyond this one. So here is to 50 days fought through, laughed through and cried through!
All my love,
E
Tuesday, June 10, 2014
Thankfulness and an update
One of the things I struggle with is focusing too much on things , particularly if they are negative. I do this to the exclusion of everything else an sometimes I land in a downward spiral of negativity and unhappiness.
Yesterday for example, I was sitting at the hospital waiting for the doctor, ruminating heavily on my high heart rate and my falling blood counts. I was tense and unhappy. The thoughts "maybe a I heart disease", " maybe I have graft failure" along with others, kept circling like vultures.
Trying to distract myself with a book, I came across an idea that I wanted to share. When his children are worried or distressed, the author of the book plays the game "100 things I'm happy for" with them. Much like counting your blessings, its a way to gain perspective on a situation. Even though things may not being going well, there are many things that are. We can't get so narrowly focused on our problems that we forget all the wonderful things. The author had listed out some things he was grateful for including sarcastic and funny ones.
I decided to give it a try:
I am thankful to have David, who is supportive and loving. I get to marry this fantastic man and share my life and family with him.
I am thankful for Madeleine, for the joy and lessons she brings. For how well she is doing despite the stress.
I am thankful for my family who have given up so much to be here caring for me.
I am thankful not to be in the hospital. That I'm alive and made it this far.
I'm thankful that I'm engrafted, that I'm on the other side of transplant. I'm glad that so far I don't have GVHD.
I'm thankful for the continued support of my friends. I'm not alone and so many people care. I matter.
And thw list went on. I didn't get to 100 before I felt better. Yes I still didn't know the answers to issues I came in with but I was reminded about how much has gone right. A little tool but an effective one.
Update to health:
I was able to see both my transplant and the unit doctor yesterday. As I mentioned above, I have been worried about my blood counts. The platelets aren't holding their own yet, my white blood count has been falling from 5.0 down to 1.5 over the week and while I got a nice boost in red blood cells, they are also falling.
My concern has been graft failure. Graft failure occurs when there wasn't enough stem cell material infused so the graft cannot get going. It is marked by rising and sharp falls of blood counts. Both of my doctors reassured me this is not the case.
My response to an injection called GCSF has shown that the cells are working. My injections have been getting progressively further apart which is a good sign.
One of the frustrating things of transplanting Aplastic Anemics is how slowly the counts come up. I knew it took longer but not this long. This transplant is God's way of trying to teach me patience. David said he would buy me some for Christmas. I asked for Christmas to come early!
The other issue is my heart rate. A week ago I was taken off my heart medication. The theory was that my heart was showing low-normal function and the med may be suppressing my platelet production. Since then my resting heart rate is 115 (normal is 60-100), and walking around I was up 130-170, very high. It was like I was exercising constantly. The doctor has put me onto a different medication now and we are hoping the problem is a passing one as my heart continues to heal from the ICU.
So in the end, all continues to be well. Minor hiccups along the way but I'm still alive and kicking. I will update in a few days as things change.
Hugs and love,
E
Yesterday for example, I was sitting at the hospital waiting for the doctor, ruminating heavily on my high heart rate and my falling blood counts. I was tense and unhappy. The thoughts "maybe a I heart disease", " maybe I have graft failure" along with others, kept circling like vultures.
Trying to distract myself with a book, I came across an idea that I wanted to share. When his children are worried or distressed, the author of the book plays the game "100 things I'm happy for" with them. Much like counting your blessings, its a way to gain perspective on a situation. Even though things may not being going well, there are many things that are. We can't get so narrowly focused on our problems that we forget all the wonderful things. The author had listed out some things he was grateful for including sarcastic and funny ones.
I decided to give it a try:
I am thankful to have David, who is supportive and loving. I get to marry this fantastic man and share my life and family with him.
I am thankful for Madeleine, for the joy and lessons she brings. For how well she is doing despite the stress.
I am thankful for my family who have given up so much to be here caring for me.
I am thankful not to be in the hospital. That I'm alive and made it this far.
I'm thankful that I'm engrafted, that I'm on the other side of transplant. I'm glad that so far I don't have GVHD.
I'm thankful for the continued support of my friends. I'm not alone and so many people care. I matter.
And thw list went on. I didn't get to 100 before I felt better. Yes I still didn't know the answers to issues I came in with but I was reminded about how much has gone right. A little tool but an effective one.
Update to health:
I was able to see both my transplant and the unit doctor yesterday. As I mentioned above, I have been worried about my blood counts. The platelets aren't holding their own yet, my white blood count has been falling from 5.0 down to 1.5 over the week and while I got a nice boost in red blood cells, they are also falling.
My concern has been graft failure. Graft failure occurs when there wasn't enough stem cell material infused so the graft cannot get going. It is marked by rising and sharp falls of blood counts. Both of my doctors reassured me this is not the case.
My response to an injection called GCSF has shown that the cells are working. My injections have been getting progressively further apart which is a good sign.
One of the frustrating things of transplanting Aplastic Anemics is how slowly the counts come up. I knew it took longer but not this long. This transplant is God's way of trying to teach me patience. David said he would buy me some for Christmas. I asked for Christmas to come early!
The other issue is my heart rate. A week ago I was taken off my heart medication. The theory was that my heart was showing low-normal function and the med may be suppressing my platelet production. Since then my resting heart rate is 115 (normal is 60-100), and walking around I was up 130-170, very high. It was like I was exercising constantly. The doctor has put me onto a different medication now and we are hoping the problem is a passing one as my heart continues to heal from the ICU.
So in the end, all continues to be well. Minor hiccups along the way but I'm still alive and kicking. I will update in a few days as things change.
Hugs and love,
E
Friday, June 6, 2014
Redefining
I have been spending the last couple of days settling into the apartment. Its been an interesting experience coming back to a home environment. Almost like a rebuilding of ones self
There are many things that can start to take away your identity in an institutional setting. In the hospital, most of the staff knew me by name but they were more likely to know me by room number. I wore hospital gowns for quite a long time with none of my jewellery. People didn't always knock and I once had a nurse follow me into the bathroom to adjust my iv meds. I stopped caring about who saw me naked or what I looked like. And with losing my hair and all the weight, I don't always recognise myself as the woman who started this journey.
I didn't realise how deeply this ran until I was out and went to pick my outfit for the day. I chose my beloved jeans and a T-shirt and sweater. Looking in the mirror, my inside reaction was "Hey, that's a girl I know." Yesterday, we went to Target and I bought makeup and a tote bag. Simply choosing something I liked was refreshing. It feels like I'm rebuilding my self-image one accessory at a time. I think it's on the inside as well as the outside.
I almost get to choose who Elizabeth is going to be.
I wonder when I come back if people will recignize me. Not my face or body though they have changed, but my spirit. David said that he thought I sounded more like the old me. I hope that's true but I hope also I will come home softer and wiser from this experience. I hope as I rebuild myself, I can hold onto the best of what makes Elizabeth and let go of the rest.
There are many things that can start to take away your identity in an institutional setting. In the hospital, most of the staff knew me by name but they were more likely to know me by room number. I wore hospital gowns for quite a long time with none of my jewellery. People didn't always knock and I once had a nurse follow me into the bathroom to adjust my iv meds. I stopped caring about who saw me naked or what I looked like. And with losing my hair and all the weight, I don't always recognise myself as the woman who started this journey.
I didn't realise how deeply this ran until I was out and went to pick my outfit for the day. I chose my beloved jeans and a T-shirt and sweater. Looking in the mirror, my inside reaction was "Hey, that's a girl I know." Yesterday, we went to Target and I bought makeup and a tote bag. Simply choosing something I liked was refreshing. It feels like I'm rebuilding my self-image one accessory at a time. I think it's on the inside as well as the outside.
I almost get to choose who Elizabeth is going to be.
I wonder when I come back if people will recignize me. Not my face or body though they have changed, but my spirit. David said that he thought I sounded more like the old me. I hope that's true but I hope also I will come home softer and wiser from this experience. I hope as I rebuild myself, I can hold onto the best of what makes Elizabeth and let go of the rest.
Tuesday, June 3, 2014
BIG NEWS
You will never guess what?! I got sprung today!
That's right. I'm out on overnight passes now. Means I'm doing well enough now that I can be in the apartment with my family.
Real food, real bed, not getting poked awake by the lab.....this is big stuff!
My white blood count has raised significantly to 5.0! Yay! Now we hope that holds and watch the platelets. They should be the next to go up. My doctor expects it could take a month or so for this to happen.
I'm very happy and relieved. All of us believe this is a big step to help in my recovery!
Hugs and love,
E
That's right. I'm out on overnight passes now. Means I'm doing well enough now that I can be in the apartment with my family.
Real food, real bed, not getting poked awake by the lab.....this is big stuff!
My white blood count has raised significantly to 5.0! Yay! Now we hope that holds and watch the platelets. They should be the next to go up. My doctor expects it could take a month or so for this to happen.
I'm very happy and relieved. All of us believe this is a big step to help in my recovery!
Hugs and love,
E
Monday, June 2, 2014
Update to where I am
I realised that most of you reading this post will not know where I am in comparison to coming out of ICU two weeks ago.
I have gone from walking with a walker just across a room to doing 5laps around the unit, two times per day.
I have completed my physio goals of being able to work my major muscle groups in squats, leg lifts, clam shells etc.
My kidneys have regained their function and my lungs are clear of fluid.
My heart function (which sent me to ICU) has returned to low normal from moderate to severe dysfunction.
I can take care of my personal hygiene.
I can eat most all foods again though I still am working on making my stomach larger.
From my highest to my lowest weight, I have lost 38 lbs. 20 of that is water weight. The rest I need to gain again.
I feel more balanced and happier and I'm not fearful of everyday.
I have made tremendous strides in my health. While my counts have not been great, I think the body has been busy trying to repair itself. Now that I'm in a good place with my health, I am hoping to see better counts.
It has been a long two weeks and the love and encouragement sent my way has really helped so thank you!
I have gone from walking with a walker just across a room to doing 5laps around the unit, two times per day.
I have completed my physio goals of being able to work my major muscle groups in squats, leg lifts, clam shells etc.
My kidneys have regained their function and my lungs are clear of fluid.
My heart function (which sent me to ICU) has returned to low normal from moderate to severe dysfunction.
I can take care of my personal hygiene.
I can eat most all foods again though I still am working on making my stomach larger.
From my highest to my lowest weight, I have lost 38 lbs. 20 of that is water weight. The rest I need to gain again.
I feel more balanced and happier and I'm not fearful of everyday.
I have made tremendous strides in my health. While my counts have not been great, I think the body has been busy trying to repair itself. Now that I'm in a good place with my health, I am hoping to see better counts.
It has been a long two weeks and the love and encouragement sent my way has really helped so thank you!
Sunday, June 1, 2014
Moments
Its hard being here. Its hard to be in ICU where being drugged and facing death, with no control, only relying on the mercy of God and the good people caring for me. Its hard to come of ICU and not have my body work and not understand the overwhelming fear so many moments bring. Its hard to look down the long road and wonder if I have the stamina, the internal strength to make it without going crazy.
But one moment can make all the difference. The moment my daughter leaned out of the car window desperately waving " I love you" in sign language. And me waving back the same, trying not to cry.
As I wrote that last line, in walked David to surprise me. I laughed and cried at the same time. Another moment.
A video call....
A story of hope.....
A Facebook message delivered just at the right moment.....
The hug of my parents and the words, "It's going to be OK"....
I have been given these moments for hope and encouragement. They are the whispers to the heart "All is well."
But one moment can make all the difference. The moment my daughter leaned out of the car window desperately waving " I love you" in sign language. And me waving back the same, trying not to cry.
As I wrote that last line, in walked David to surprise me. I laughed and cried at the same time. Another moment.
A video call....
A story of hope.....
A Facebook message delivered just at the right moment.....
The hug of my parents and the words, "It's going to be OK"....
I have been given these moments for hope and encouragement. They are the whispers to the heart "All is well."
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
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