Out of Remission. More neurosurgery. Hopeful for immunotherapy.

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 flow of fluid in my head, which was raising the pressure.  After the MRI, I was moved into the neuro-wing of the hospital where we made a plan get in there and break-up the cyst. I got to give Dr. Gala, credit for figuring this out from MRI images: he showed me the pictures, and it wasn’t obvious. We did a port flush with a dye to confirm improper function of the port, which it did, and so fixing the port became the plan. In the mean-time, we tested for leukemia because of the suspicious mastoid. Tests results came back telling us leukemia was back in the bone marrow and the central nervous system. Then I sat around the hospital for a week and took meds to pump up my platelets (I still have some version of ITP, where my body eats platelets, my own or donated) to a level where I could safely handle head surgery. I needed 100k platelets and neurosurgeons don’t like to budge much on that. The night before surgery I was at 103k. But at 7 am the next morning my nurse popped in and said overnight my platelets had dropped to 63k. The hypothesis from the oncologist was that my marrow was already being compromised by the leukemia. Massively frustrated and afraid I was missing my window—rescheduling surgery would mean waiting another week, a week in which my bone marrow would be more compromised—we were able to order a few extra bags of platelets and Dr. Gala agreed to go ahead with surgery if they were a bit low. Platelets ended up in the 100s afterall, and Dr. Gala succeeded in moving a camera around in my brain poking holes in the cyst—reducing the pressure and getting the Ommaya port back communicating with the rest of the brain (and back properly functioning for future chemotherapy treatment). Recovering from the surgery, was one of the craziest weekends of my life – something about the sleekness of the brand-new neuro ICU, the anesthesia, the post-op steroids, and the surgery left me extremely disoriented and paranoid.  Lucid dreams would seamlessly mix with reality and I became unwarrantedly suspicious of the medical staff.

Where do I stand now? The surgery was important to bring my vision back to normal and reduce the headaches, but it didn’t fix the elephant in the room. So on August 3rd I went into where I received my previous treatments over the years, the Seattle Cancer Care Alliance (SCCA), to meet with my previous oncologist, Dr. Shustov, about the cancer side of things. Things have gotten better over the 5 years since my first diagnosis and I’ll be on a clinical trial for Car-t cell therapy, the most exciting of immunotherapy options for ALL-leukemia, (and it was partially developed across the street from the SCCA at the Fred Hutch Institute). With this immunotherapy, they will extract my own white cells, modify them by inserting a cancer-attacking plasmid, then infuse them back inside me and let them have at it (while hopefully not causing a dangerous massive immune response aka cytokine storm).  Unfortunately, researchers are still working on making the car-t cells have a memory and stick around long enough to help with longer-term remission, so to combat that fact I’ll also be a candidate to undergo a stem-cell transplant, which offers better prospects for longer remission. The whole treatment schedule is scary stuff, with lots of unknowns at this point, and I have no idea how I’ll respond to the many facets of treatment or the side-effects. The wheels are being set in motion but it’s a bit of a waiting game to get all the ducks in a row, in the meantime, I’m going in to the SCCA and the UW hospital to knock the cancer back with chemotherapy, same ones I’ve had before: Cytarabine and methotrexate. These are infused through the Ommaya port to attack the CNS or through my central line to deal with the systemic leukemia. The mastoid behind my right ear is a mass of leukemic cells (confirmed from a biopsy that occurred during the surgery), a rare presentation of ALL, but as far as I can tell it doesn’t change my treatment plan at all.

It’s going to be different this time around, with more immunotherapy and less chemotherapy. I don’t know how if I’ll respond better or worse to treatments. We also have Alpen to take care of now, which might give a needed sense of purpose to my days or be overwhelming. For now, Briana and I are at home listening to music, playing with Alpen, cooking Yotam dinners, going on walks, etc. We don’t know exactly how to frame the situation yet (go big or go normal?)—and for me, deal with another awkward pause in life. It does feel extremely unlucky and unfortunate, but that doesn’t get me anywhere. The diagnosis has slowed my days down—most obviously, because I’m not working at the moment, but in smaller ways too because all of the priorities have been shifted. I enjoy the smaller moments more—it’s something that many cancer patients feel I bet, that when you don’t know how many more moments you’ll get, they become precious. Whether its meals or smiling at Alpen, I’ve been just trying to get the most out of things. That’s keeping me afloat for now, and hopefully they’ll be good news on the horizon about treatment progression. 

Alpen and I recovering from a long day

Lots of hospital visits