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
Friday, August 29, 2014
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!
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