Tumor Timeline

This is mostly to anchor myself in time. I feel like so much of this month is a total blur. Thought others might be curious too though…

2/2/17 2pm: MRIs at Carle Clinic in Danville. Tech is super nice. I say to Dan as we leave, “If he wasn’t so nice before the MRI, I’d be worried he saw something.” Tech tells me I’ll probably hear results tomorrow morning.

2/2/17 6 pm: Look at my phone. 8 missed calls from my doc’s office.

2/2/17 6:10 pm: After hours service tells me I have an appt next day at 1:30. I’m thinking “Why so dramatic?” I’m prepared for an MS diagnosis. They just don’t know I’m ready.

2/3/17: Doctor breaks the news I have a brain tumor & recommends I go to Barnes Jewish, where she’s been in touch with a doctor specializing in brain stem tumors.

2/3/17 pm: Arrive at Barnes Jewish ER with Dan & parents, repeat all MRIs done in Danville, get CT scan, EKG, chest X-rays, every possible autoimmune blood workup, etc.

2/4/17: Fully admitted to hospital.

2/5/17: Start steroids & other meds, meet with all the doctors. Brush teeth & dress myself like a boss thanks to my performance enhancing drugs.

2/6/17: Get starved for 16 hours, have PET scan.

2/7/17: Get nervous about spinal tap; have it called off by doctors because of tumor. Even guided by x-ray, they are not comfortable doing it.

2/8/17: Surprise! Spinal tap back on, and they’re going to do it by *feel*, bedside, without x-ray. It will require someone to ask for a longer, bigger needle. The headache from the change in CSF pressure will be the worst i’ve ever experienced, until…

2/9/17: Brain biopsy & confirmation of grade 2 astrocytoma.

2/10/17: ICU, machine peeing for me, PT where I walk about 60 feet. Worst pain of my entire life.

2/11/17: Pain, dehydration, no sleep, crying, poked & prodded every 30 minutes, lots of wondering if I should have refused the biopsy, despair.

2/13/17: Released from hospital with so many medicines, but pain mostly controlled and no complications or unexpected issues resulting from surgery. I can pee on my own and walk the hospital halls with my trusty walker.

2/14/17: Recover from surgery at Mom & Dad’s.

March 1, 2017 at 10:02am

March 1, 2017 at 10:02am

Today I’m waiting to hear if I qualify for co-pay assist/free drug program on my chemo meds and then I can actually order them. It feels chaotic, but it’s being handled by CVS Specialty, my oncology nurses, social workers. They picked up everything for me; it’s just that I get so tired of the phone ringing and talking about medicine and insurance.

Super moon-faced from the steroids, but they’re keeping me strong enough to get up & walk around a little. Turned around in place without clutching the walker while I brushed my teeth this morning too. So my balance is improving, and that makes me happy…even despite drugs that make me constantly feel like I’m sliding off the planet.

Mom’s making sure I get in my fruits & veggies and keeping me fed. My hair is growing so fast I’m already contemplating my next buzz cut!

Dad’s making lame dad jokes, letting Boomer out for business midday, helping me with the bills, and going to help us do our taxes.

Dan comes back from a couple of days of doing chores tomorrow, and I’m looking forward to seeing his sunshiny face. I won’t be going home for several weeks, but he’s cleaning and polishing floors so when I do get to go home everything will be sparkly and comfortable.

Best. Husband. Ever. (I’ll probably be saying that a lot, just FYI.)

Boomer & Izzy are being cared for by Ryan & Melanie. And I get daily reports and pictures. Dan & I feel sorry for our kittphews while a strange dog & cat crash at their pad, but we will find a way to make it up to them.

February 28 at 3:22am

February 28 at 3:22am

I can’t sleep tonight. Partly due to hunger, partly to overthinking just about everything. If you have food you want for yourself, I recommend you hide it from me or put mushrooms in it. 😃

February 27 at 2:58pm

On today’s agenda: fun with insurance, pre-auth for chemo meds, & the doctor’s office. Because medicine isn’t complicated enough and sick people could always use a little extra red tape.

February 27 at 10:53am

Dan’s on his way to Urbana for a couple of days to take care of some things on the homestead. I am allowed to travel, but it’s just too hard. I am very sensitive to light and sound the past few days. So staying put with mom & dad and continuing to heal up after surgery.

Made an attempt to Google my tumor type last night and got kind of panicky. So I went back to playing Farm Heroes Saga. Dan went over the images with one of my docs when I was out of the room. Not quite ready for that either. There are counselors I can talk to when I’m ready. But I’m not. Yet.

Starting to have really bizarre dreams at night. Tumor? Meds? Subconscious processing reality? No idea.

Still feel better than I did before the biopsy. Which has me kind of amazed. I knew things were bad, but you kind of lose track when all the bad stuff just piles on.

Anyway, enjoying my “vacation” from doctors & treatment while I can.

Pin It on Pinterest