Battle Hymns of a Hot Mess Mom

I have becoming increasingly unsure of myself. I’m scared. I’m not drinking water every hour the way I was. I’m not walking as much as I have been. I an focused on the wrong things.

In a matter of 7 days – I have lost just about all my hair. I know the high dosage cytarabine was going to have this happen. But knowing it’s going to happen and seeing it happen is very different. My scalp hurts and is more sensitive. Even though people have said that they are proud of me, I’m not feeling proud. I feel scared that I am not strong enough, I feel scared that I’m not going to be okay. Transplant is being quiet – I don’t know more information.

My mind isn’t strong – my strength in myself is shaken by the return of cancer. I had the potential of transplant taken away from me because the cancer came back. I spent my Day 0 getting chemo – and while I was disappointed at the hospital but I have become increasingly saddened. I have to have a focus.

I started this morning with a bill from COH for $112,400.68 – I went from asleep to awake very quickly. My first call was to my insurance company as I didn’t see this bill in my EOB. I asked why there would be a bill that was outside of the insurance company. My insurance company and I called COH and asked for a billing explanation. Michelle from COH billing said she didn’t know why this was billed directly to me. My fear is that if this bill remained unpaid it would effect my care. Sure people make it sound like your care wouldn’t be affected but let’s be real just ONE prescription of mine is $5,900. Not having insurance can severely affect your level of care. It is a larger conversation that people need to start having. How does a day of blood work only turn into a $112k bill? But I get a self-pay discount.

I have learned throughout this cancer that self-advocacy is an absolute must. I have to know how my mg of Benadryl is pushed as premed before my platelets are administered. I need know that I run 120ml for the first 15 minutes then if no reaction I can go as high as 300ml. Blood doesn’t require premeds but also start at 120ml for 15 minutes then bumped to 250ml. I need to know that my hydration runs for 2 hours.

The fam headed up North for a few days. J was uncomfortable leaving me home alone and then home with the doggos. M is going camping where doggos are not allowed. Both of them are super anxious that I’m home alone with the doggos. I am being diligent with washing my hands and wearing my mask around them. My right lymph node is swollen tonight. I’m a little freaked out because that’s how my cancer started. I don’t have anything to fight ip any infections or diseases so swollen lymph node are not a good sign. I have a 7:00am lab and 8:00am transfusion tomorrow. So I will be right as rain after. That’s the thought.

B is very anxious and is whining a lot. He lived with me as a baby for a few weeks so he just need to remember this was his home and relax. He peed on the carpet but that’s just his nerves. I turned on Bluey and we all got invested in the cartoon. Both doggos were focused and watching. But then everyone fell asleep and I was the only thing any invested and watching. There are 7 different doggo treats to enjoy this weekend along with some turkey and cheese. I recognize the cheese tax is a real thing and will respect the cheese tax in accordance to Doggo Bureaucracy of Cheese Tax (DBCT). They have classical music playing for their relaxation and snuggles for bed.

Early day tomorrow so I’m off to bed with my swollen lymph node.