Battle Hymns of a Hot Mess Mom

Alaska Airlines just pinged me, “Time to check into your Flight!” Thanks Alaska for rubbing salt in the wound. Tomorrow was supposed to be the big Spring Break Trip to NY with the kids. I cashed in all my mileage and we were going to fly in style. I had a whole itinerary mapped out. First day was going to be Lower Manhattan, cross to South Street and end up in Little Italy. Second day was going to be midtown, with a scooter cruise through Central Park. A trip to Niagara Falls….all unfulfilled. This is where the negatives come into mind. All the moments I put off. All the “somedays”

I know I’m supposed to stay positive, but what if the “somedays” don’t come? I have hustled like a dog, for what? Returned airline tickets, cancelled hotels, cancelled train tickets. I wish I took my moments, and took my “somedays” – TODAY. Because it wasn’t worth it. None of it was worth it. None of it. Ooof. The anger that boils in all of my mistakes.

The day started off better than yesterday – I got 5 hours of uninterrupted sleep until my bladder was going to burst. So 4am, I waddle myself and “Frank” – I had to name him since we go on walks together. I was going to name him Chad…but since my gf has a new beau named Chad — I wasn’t going to sully the name. So I stuck to Frank, he’s heavy cause he has the chemo pump and my fluids. Sometimes he rolls randomly away from me and pulls on my tubes. I then yell at him and tell him that hurt and to stay put. Clearly the floor is not even here.

I get Bag 2 today, Bag 1 has a little less than 1/4 left. Dr C came to see me with Alli yesterday (nope haven’t changed my mind yet on what I’m calling her… Alli it is). I’m here to protect the innocent and all but at the same time…I have leukemia. Alli it is! Anyway… the plan is after 10 days of induction chemotherapy, Day 15 is the next nail biter. On Day 15 I get my bone marrow biopsied again. This is huge because this is where they can see if the chemo worked. This is also where I am at my weakest. What Dr C and Alli want to see is a clean marrow, no immature white blood cells, they want to see a clean plate. (Unplug and plug the computer.) Then once they see the clean plate, I regrow my own healthy white blood cells on my own. The hospital will give me blood and platelet transfusions but white blood cells. That’s a solo job. WHEN I’m successful in rebuilding my white blood cells. I will be considered in remission. Then comes the next mountain. Once I’m in remission I will need to get a spinal fluid sample and bone marrow sample to the City of Hope Memorial Hospital where they will start working on a match.

Due to the genetic mutation I have I am not in the low risk category – so induction chemotherapy will not be enough. I’m in the medium risk category – which means after induction chemotherapy is completed I will need a bone marrow transplant. My specific cancer is in my tissue, meaning if I don’t get the bone marrow transplant, I will get cancer again. That’s pretty heady. Not one mountain but two. Oof. Only 47% of the Asian community even swab for bone marrow donations. Those odds freak me out and I’m afraid of Dr Google. I’ve been down that path and it wasn’t pretty. You start reading about mortality rates. Yea, no thanks.

D is stopping to visit this morning, excited to see her. Always good to see friends when possible. Gives J a break from baby sitting me lol. 10:30am starts the “starter pack” antibiotics and steroids and then 11:30am will start Bag#2 of Chemo. Oh oh and laxatives. Cause having chemotherapy isn’t enough I need to poop…