Battle Hymns of a Hot Mess Mom

The doctors said I should have rebounded by now from last month’s chemo but my numbers haven’t recovered. They did a blood test and it came back with 15% cancer found in the blood. But those tests are really accurate. So he told me not to over think.

Next step is another biopsy to see what’s going on. Could be the medication I was on lowering my numbers, or could be cancer returned. I’m on Jakafi which literally states: Jakafi can cause serious side effects, including: Low blood counts: Jakafi^® (ruxolitinib) may cause low platelet, red blood cell, and white blood cell counts. 

But nothing is for sure until the biopsy. That’s the most accurate. I have to be sedated for the biopsy. Dr P is trying to see if it can perform at a closer hospital to me but it has to be the same exact biopsy and have the samples sent to the same facilities as City of Hope.

If so that opens up a lot of times and I can get the biopsy done as early as this week.
If not, then I have to wait for City of Hope to schedule which could be a few weeks. The good and the bad, if the biopsy comes back and the MRD is negative – this is all because of the medication. While I’m off of Jakafi, it could still have residual effects. If it comes back above 5% then I could be in a better position for the study drug. I’m obviously hoping for an MRD negative.

I know I’m overthinking and over obsessing. I know I have to get in the right headspace and I’m struggling. I’m struggling to find comfort and struggling to find gratitude. I only feel anxiety and fear, two of the worst emotions to mix in right now.

Explaining the situation over and over again is exhausting sometimes. I don’t have the emotional capital to repeat it over and over. Sometimes it’s easier to just send a cat / doggo meme. Sometimes just keeping light is amazing. Complain to me about your husbands, boyfriends…complain to me about life. I welcome it all. Just don’t want to talk about cancer. I have a medical degree in AML at this point. I’m so sick of cancer.

I got into a huge argument with L today about his weight. He’s getting bigger and bigger and eating tons of junk, especially at camp. I don’t want him to get sick later on and want him to be healthy. Especially because of my AML…I don’t want him to get cancer and die. What does he say to me? “Then, I get cancer and die.” How do I respond to this? How do I stay calm?

I don’t feel good tonight. I’m off to bed.