Yesterday I was officially diagnosed with CML. Last night I got on here and it offered the choice of a post or journal entry. I spent over an hour putting together my story in a short concise format for a Journal entry. After re-reading for the 10th time and fixing minor entry errors I went to post and it gave the option to add a picture or video, so I picked a picture I had taken in the last year and tried to submit...

...all that work was gone. Just like that.

That seems to sum up just about everything in my life for the last 15 years or so.

Well, anyway...que cera, cera

So yeah, yesterday I sat in our van with my husband and listened to Dr. Johnson confirm that I have CML.

My WBC has been off since September; it was normal in May. I went through two minor surgeries and a couple of viral illnesses since September which led to a couple of short hospital admissions. But with the stress of all that we thought my WBC would just be a fluke.

September pre-op 17, re-draw 15, first week of December after syncopal episode 25, viral gastroenteritis with dehydration third week of December 32, next day 25, many fluid boluses later 17 and discharge recommendation for possible Hem/Onc referral, (my son brought home Flu A right before Christmas on the tail of the GI bug from his older brother; so My PCP and me wait to redraw.

We wait...and then...

1/6/2026 my WBC is 39.2 and my world stops

I call my Hem/Onc referral, their first appointment is 2/19/2026, I tell them my WBC is 39.2...appointment for the next day at 11am is suddenly available.

1/7/2026 My husband and I meet Dr. Johnson, labs are drawn, phone call for following Friday scheduled.

Tuesday 1/13/2026 I see 2 of my 4 results in MyChart...I learn about the Philadelphia mutation...I figure out how this is going to go...Dr. Johnson had already mentioned the possibility... a MD friend reads my labs with me and confirms my assessment.

The next day I talk to my husband.

Friday the last of my labs are posted. Later Dr. Johnson's triage staff have let me know he is running behind. 45 minutes after my scheduled appointment Dr. Johnson calls, and my husband and I hear him confirm it all I had already known.

He wants to start me out of dasatinib (Sprycel) 100mg daily. Next appointment mid-March. His office staff are currently looking for grants to help with cost.

So, there it is. I have Cancer. I have CML (chronic myelocytic leukemia) (HCC) (Primary).

I have been married for 18 years this coming November, we have four children, 12, 9, 7, 4. two boys, a girl, and a boy. My younger Type 1 DM brother has been living with us since December 2018. My parents moved in 2021 due to my mother's worsening condition due to her unrelated Cancer. I am the only fully employed member of the household, my husband's company was sold out from under him in August, he is still looking for work and we have been helping my sister out along with her children.

I am grateful because I know it could be so much worse.

I am scared because there are no guarantees.

Mostly I am tired.

(My favorite colors are blues, greens, and pinks. my favorite animals are large wild cats, birds of prey, and horses. My theme song right now is "That's life" by Blue Eyes himself. I love music, nature, and I believe that we are all precious living children of a wonderful Loving Heavenly Father. That all life is precious and to be respected. I love rainy days with a good book, small moments of wonder and joy watching my children and pets, and the thought that my husband loves me even knowing how crazy I am.)

Leukemia

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