It's been awhile...

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

Miracles do happen

Well I got my own miracle, thank God.

My viral levels have come down to 24 000.  The nodes have shrunk.
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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

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.

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.

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.

Drinking from our red neck wine glasses courtesy of my cousin! 

 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

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.

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