Round 2 is much harder than round 1

New addition to the list of experiences I never wished to have: I am typing this in the hospital because I ended up back here Wednesday night with another infection (I am assured this is all normal, part of the process).

Last Monday I found out that my first round of chemo did not work as well as we had hoped and expected. Truly the most horrifying thing I have ever experienced. After reading every single paper published about Philadelphia positive AML (some advice: never get a disease that is so rare you can read every single paper about it), my doctors and I have decided to switch protocols and try a more aggressive approach. I am having a very difficult time accepting the realities of this illness and looking back on the good old days of thinking I had normal AML with lots of nostalgia. Send me all your good thoughts.

I am starting my second round of chemo tomorrow and will be sick for the next 6 days. It is super weird to be able to calendar in your sick days in advance. When they give you chemo, everything is labelled with huge neon “poison” tags and the nurses have to wear huge protective gowns. Then they put it in my veins and I get a 104 degree fever and forget how to do anything other than stare at the wall and be miserable. Anyway, this is my way of telling you that I will be dropping off the face of the Earth for the next week or so.

After this round of chemo, I will be in the hospital in count recovery until my immune system grows back a little. We can’t find out the results of the chemo until my counts recover, which will take even longer than last time since we are going to kill more of my bone marrow with higher doses of chemo. Probably 6ish weeks. Confusion is one of the possible side effects of my new chemo (happens to ~3 in 100) so let’s all hope I am too confused to be scared out of my mind for this entire period (the confusion is temporary usually).

I don’t really have that much else to say so here are some reminders my parents bullied me into posting here: let me know in advance if you’d like to stop by (sometimes I am super useless and sick so it won’t be fun for either of us), my baby immune system hates me so I can’t hug anyone, please please reschedule if you’re sick.

3 thoughts on “Round 2 is much harder than round 1

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  1. Hang in there kiddo. I wish there was something to make this easier for you. I don’t know you but Theresa Johnson is a friend of mine. Thinking about you and sending positive vibes.


  2. Sorry you are going through such a difficult time. I hope that this is just a bump in the road for you, and this will soon be a distant memory!


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