ROUND THREE HAS BEGUN

 Fuck Cancer.

So yeah, something is going on with Kristina.  She’s known this could come, but it’s still a shock.  A few weeks ago she found herself out of breath walking up the hill above the Langley marina.  No big deal but at the time she thought ‘Jeez, am I that out of shape’?

Then there were a couple of minor ‘ocular migraines’ in the past couple of weeks but she didn’t think much about it.

Last Wednesday she went in for a routine blood draw in advance of a planned check up.  Then the results started coming in.   Her CBC blood levels had dropped significantly.  From her previous two bouts of Leukemia she knew what bad numbers looked like.  These were worse.  Way worse.

Blast cells are young Leukemia cells that start to take over the bone marrow preventing normal blood production.  The early stages of this has been considered ‘myelodysplasia’, previously thought to be a pre-leukemic blood disorder.  When blast levels get to 19-20%, medically it has crossed over to AML – Acute Myeloid Leukemia. 

In her previous 2 bouts with Leukemia, (2007 and 2014) Kristina’s blast cells were 19% and 19.7%.  On Tuesday she was looking at 27% blast cells. A terrifying number.

She knew – or thought she knew – given her previous bouts of Leukemia and a damaged bone marrow environment that numbers this high would prevent her from being a transplant candidate.  As a “third timer”, this was very likely her last bout with this beast.   For several days there was a valid consideration of the gravity of the situation and whether or not even Chemo was an option.

Last week was a whirlwind of emotion, action, many tears.   Increasingly if unevenly, there was a strange peace and acceptance this would be a significant moment of making life choices.   She was preparing herself to make them.   She’s not afraid of dying so much as afraid her stories, her ‘place’ here with a wonderful group of people will be lost.  It’s hard to explain and I’m not sure even she understands it fully, but she still wants to hold up her part within her wonderful (in her words, amazing and phenomenal) tribe of people. 

The past 5 days were an emotional roller coaster for all of us.

Yesterday morning (Thursday, April 6^th) was her first ‘real’ doctors appointment.   What she learned in the first 30 minutes is medical science has advanced quite a bit since her last bout with this beast and the bone marrow environment wasn’t as important as she thought it was.  There was hope.

Her Doctor and her care team believe and have hope that Kristina is a candidate for another transplant.  She found herself questioning  the Doctor regarding her comments on her bone marrow environment viability, but the Doctor was dealing with current medical knowledge.  Kristina’s knowledge was rooted in 8 year old history and with medical advances it’s almost ancient history.

The fact there was hope floored and overjoyed everyone in the room.  Which lasted about 30 minutes as the gravity of the treatment plan began to sink in.  There are significant risks and important milestones that need to be hurdled.  First aggressive Chemo to get the blast cell count down, then stabilization with ongoing assessment if she’s still a transplant candidate.  Then, if the answer is yes, if she’s healthy enough, if the numbers stay down, if a donor can be found, all these damn ‘if’s’ – then the transplant.  Which is only the beginning of another tough chapter.  Even the survival of the transplant isn’t a sure thing.

During the meeting about the care plan she looked at the head of her care team and asked ‘how many 3^rd timers have you seen successfully get through treatment’.  The slow answer was ‘I can count them on one hand’.

So there’s hope.  And a plan.  The phrase ‘Hope for the best but prepare for the worst’ has never had more meaning to her.  It’s hard to fight with everything you have and still be at peace with whatever outcome happens.  She may not be there yet.  But she’s choosing to fight.

Many, many details, but the plan (and future posts will contain more updates and more detail later as things come together) is she’ll get her Hickman tube placed on Wednesday the 19^th and then be admitted to the hospital on the 20^th.  That will start roughly a one-month in patient chemo regime where they hope to knock her blast cell percentage way down.  Once lowered, she needs to undergo more tests to determine if she’s still viable as a candidate for a transplant.    It’s a combination of having low enough numbers and being in shape for the transplant itself which will take a further toll on her body.

In short, she’s going to get a lot worse before she gets better.

All of this sucks.  Big time.  To make matters worse, she needs to stop ‘being Kristina’ for a while.  Which is tough for her.  She needs to focus her energy on herself and stay strong enough to endure the treatment.  Her energy has been spent getting out there – organizing cruises, hitting the slopes, sailing – metaphorically being ‘on deck’ for all that life has to offer and being with her cherished community of friends.

The realization that she’s sick – very sick – hasn’t fully set in.  She’s still processing it.  But she needs to prepare her friends that she will likely not be able to respond individually to all the amazing well wishes she’s getting.  She’s asking that you have patience with her responses.  She’s going to have ‘Chemo brain’ and be pretty foggy once it sets in and lose a fair amount of concentration – but she’ll still need encouragement.

So we’re going to try to use this blog to keep everyone updated with the journey that is to come.   It’s not going to be easy.  So have patience with her if she doesn’t immediately respond.

We’ll provide more updates as we’re able.

Editor’s note:  My name is Mark Aberle.  Kristina asked me to serve to journal her journey.  We’ll try to make sure the reader understands who’s voice is writing.  I’ll try to capture as best I can her candid comments and thoughts and describe, as best I can in layman’s terms, the current circumstances until Kristina can take over in her own voice.

The blog, as Kristina explains, serves several purposes.  It serves to communicate but also helps fellow transplant patient navigate their own by learning about others.  Transplant patients reach out to each other for support and information.

Also, the blog will keep it off facebook and Kristina has come to rely on this mechanism during her last two rounds with Leukemia.