Testing...1...2...3...

Some days I ask myself, "Is this really my life?"  How many people have to drive an hour to have labs run every ten days?  How many people have to ask their family members for blood? (To get HLA typed?)  How many 36 year old's have to juggle "old man cancer" on top of a full time job, building a house, and planning to get married?  How many people with CML fail to respond to the miracle drugs that keep the cancer at bay for so many?

Oh, just me?  Ok, then.

I guess this IS my life.

HLA test kits came in the mail last week.  So weird.  HLA stands for Human Leukocyte Antigen - which is a test that identifies the unique properties of a persons immune system.  To put it simply - it's actually much more complicated - but essentially, HLAs differentiate "self" and "non-self" cells.  The cells that are identified as belonging to an individuals particular body are left alone to do their own thing; the cells it sees as foreign are attacked and destroyed.  HLA testing is used to determine compatibility for a Stem Cell or Bone Marrow transplant.  The goal is to find a donor with cells that match your specific HLA antigens most closely, so that the body does not recognize them as foreign and try to attack them.  During a SCT/BMT (stem cell transplant/bone marrow transplant) the recipients blood making cells are destroyed through chemotherapy and/or radiation (they keep on making cancer cells instead of healthy cells, so they're not doing their job right, anyway) and then the recipient receives cells from a donor that will hopefully grow and build a new cancer free blood making system.  Easy peasy, right?  Not so much.  They pretty much have to kill off the recipients blood making system, rendering the body essentially defenseless to any kind of infection, until the donors cells start to grow and multiply, and start to provide some protection.

So why does any of this matter to me?

The first Ponatinib results are in, and they are not as good as I had hoped.  If you'll remember, every couple of months I get tested for the amount of cancer that is still present in my cells.  I've referred to it as a BCR-ABL PCR test.  On Tasigna 800mg I'd reached an all time low of 4.003%.  I was hoping that Ponatinib would push it down even further, but alas, my measurement on 9/23/16 was 9.487%.  So, going the wrong way again.  (Ponatinib is supposed to be the major bad-ass of all TKI's too, so I just don't get it.)  The majority of people with CML respond well to TKI drug therapy, but I've never tested below 4% to date.

BCR-ABL PCR

So, in light of recent testing, it's one step closer to the SCT/BMT back up plan for me.

My sister is amazing, for those of you who don't know this.  I called her up Monday morning, made small talk about her children's parent teacher conferences, told her I had a bottle of apple wine for her, and casually slipped into the conversation that I needed a couple of vials of her blood, if she could spare it.  And like a lightening bolt, she made it happen.

I, myself, have been in "avoidance mode".  UCLA called me a month ago, and I refused to listen to the voicemail for three weeks.  I finally decided to be an adult about it, listened to the message that prompted me to schedule my blood testing, wrote the contact number down on a piece of paper, and promptly shoved it in the bottom of my purse.  Well, turns out that the transplant coordinator is better at her job than I am at being a responsible adult, and she called me again last week.  (To my credit, I did answer the call, so I feel like I should get some kind of consideration for that.)  She had blood testing kits out to me within two days.  Now, my plan was to let them sit in my cupboard for a week or so, you know, just to adjust to the altitude up here (that's not a thing, I made it up) and give me a little time to stew about it, but Lacey wasn't having it.  (When a person needs a SCT/BMT they first test all willing siblings.  There is a 25% chance that a sibling with the same mother and father will be a match.)  Time elapsed from when Lacey first learned about the testing, to the time they were being couriered to UCLA, was a total of about 2 hours.  Thank you to my little sister for being the grown up.

Now that the tests are in, I fully expect to hear from no one for the next month or so.  I'm not an urgent case, so it's very likely that no further steps will be taken unless something in my blood work goes considerably wonky in the not too distant future.

Which is not my plan.

I'm done with wonky.  I'm done with special.  Had enough of unique. I'd like to place an order for boring and predictable, please.  C'mon body, a little cooperation would be nice this time.