Battle Hymns of a Hot Mess Mom

Normally I share news pretty quickly with friends and family about updates, but today I didn’t. I shared with J, he knew before I did and I texted my mother…that was it. It’s odd because I normally don’t share much with her. I share what I deem necessary. My mother is my cactus, if I get too close I get hurt, I get pricked. Her and I are maybe too different or too similar – I’m not sure but I have to keep her at an arm’s length to protect myself.

The biopsy results came back. I went from 1.3% to 0.5% cancerous blast cells. After J read the report he said “That’s a good thing right?” I stared back at him and shrugged, “I think so, let’s wait to hear from the Doctor.” I’m not sure if it’s a good thing, I’m not sure what it means…does it mean the DLI is working? The transplant is working – there is time on the clock for me? I can raise my children, I can be at their graduation, I can dance with them at their wedding? Can I exhale? I don’t know.

When I left the hospital after transplant I rang that bell HARD. I was full of gratitude and joy – the transplant went through, I had minimal GVHD (graft vs host), I even posted it on social media. Then 30 days later, my first major biopsy showed shadows in the MRD. I wasn’t clear. Second biopsy showed 1.3% relapse cancerous blast. Now 0.5% cancerous blast. I’m afraid. Because leukemia is sneaky, it’s evil and it plays chess. I went from 96.8% last March to 0.5% in February. I am incredibly grateful. But what does this actually mean? Am I disqualified from the compassionate use trial now? Do I need it? I have more questions than I do answers. I have more concerns than I do joy. I am afraid.

J and I haven’t been on the same page lately, we’re finally setting up the trusts / wills. These aren’t fun conversations. We’ll hopefully get the first draft in a few weeks. We don’t have a lot of assets but I have specific requests. I don’t want to be a burden on the family, when it’s time…trip on the cord. Don’t let me be a potato on a vent. I want to be cremated and ashes scattered in the ocean at Lover’s Point, CA. No funeral, no one needs to talk about how I was the kindest, most this or that. I did not light up a room. Let’s be real. I’m hard to love. I am not everyone’s’ cup of tea. I would not tell you how cute your baby was when it was ugly ASF. I would just tell you “OMG… it’s a baby!” If you’re kid was ugly ASF I would send a photo of your kid to my ONE friend that has NEVER judged me for being a complete abomination and would text “This kid better have an AMAZING personality because he’s FUGLY!” She would text back “Girl. I love you.” I’m no angel and certainly not perfect. I didn’t light up the room ever, not even for J.

I just spoke without a filter, but I read the room. I know who to make my comments to and when to STFU. I have my regrets especially to certain people who are no longer in my life. I will never forget A and will never not have love in my heart for her. She drove her 6 month old to my house every day to help me with L after I gave birth so that I could work. She taught me the lessons she learned being a new mom as well. She helped me when I couldn’t help myself. When the postpartum hit me so hard I couldn’t function. She showed me how to pump my milk, how to cut L’s nails, she guided me in those critical first newborn moments. I will forever have love for her.

If I love you, I love you hard and unless you leave me…I hold on. Maybe because I don’t feel like I belong…I hold on. But if you burn me, I’ll fake it but you’re dead to me. I hold grudges…ooof do I hold grudges. J what’s your face from 3rd grade, I would slap you in your whole face today. VZ from 4th…straight up would slice you. Yea, I have problems.

So save the fake funeral BS. Text the people in my phone contacts – scatter my ashes. But again, uncomfortable conversations. It’s doesn’t put J in a good headspace and then we’re not in a good place. And being the a*shole I am I told J I would keep him on the night stand next to me until I died. I think I said it to trigger him but I also secretly wouldn’t be able to let go. As I’ve said…I am a hot mess.