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.
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