Lovebuch family happenings

It’s been a busy two weeks since I’ve left Swedish, two Saturdays ago the 5 th , I checked into the UW hospital to get a Hickman central line catheter installed in my chest in preparation for chemotherapy. I had a Hickman installed back in the 2012. A Hickman means no swimming, and showering is annoying because it needs to be covered w/ plastic wrap.  But it also means I can get chemo through it and no more arm sticks for blood draws. I had two rounds of Cytarabine in the hospital. Dr. Shustov wanted to knock back the systemic leukemia, but not eliminate it, because the CAR-T cells will need something to attack, latch, and multiply. Dr. Shustov said he ordered a ¼ of the amount of cytarabine that he would give for standard ALL-treatment. It was nice because I didn’t feel too sick or nauseated after receiving the drug, but it was still strong enough to knock my counts back for two weeks. Following the Cytarabine, I went home for three days, and then back to the clinic for an Ommaya tap

I found out some bad news last week: I’m no longer in remission. Ever since Alpen came home, I had been having some head-aches and sinus pressures, and then more recently I started seeing binocular double vision. Following a visit to the ophthalmologist, where he said the double vision was caused by an increase in brain pressure, I checked into the ER for an emergency MRI, where they found a mastoid behind my right ear along with some pictures that were likely showing a malfunctioning of my Ommaya port (a piece of hardware in my head that we used in the last round of treatment for better access to the Central Nervous System). But which of these was the cause of the increase of pressure? The mastoid wasn’t big enough and not in the right location. Something else was up and through comparison of the MRI and CT images I had before the installation of the port two years ago, Dr. Gala, the neurosurgeon, thought a cyst had formed between my ventricles and the port and was causing improper f