One year ago today, July 18, 2016, Eden was diagnosed with an Oligodendroglioma -- brain cancer. At the time, our world turned upside down and almost nothing made sense. In the months since, I have gotten to (and Eden and the girls too) a place of radical acceptance. Not one of us in this world has any assurance that tomorrow won't be our last. Therefore we are no different from anyone else. And if we're no different than anyone else, there's no use in asking "why is this happening to us?" Rather, it's more important to ask: "this is my life, how do I live it to its fullest?"
In a few weeks, Seattle hosts an annual cycling event called Obliteride, raising money to fight cancer. Eden's company, Juno Therapeutics, has a team and is riding in honor of several Juno-ites including Eden. Alas, we will be flying to Maui that very day, otherwise we'd be pedaling along with them. Eden just wrote a 1-year recap for her workmates and I'd like to share it on Posthope. It's a little long, and you can hear her biotech lingo jump out in the prose, but it's Eden's words about this past year....
My name is Eden Zasloff. I’m one of the study managers working in the clinical operations department here at Juno. I recently marked my 2 year anniversary at Juno, of which one of those years has been spent absorbing a lot of new information, researching options and undergoing treatment for my recent brain cancer diagnosis. As I have lived with this diagnosis over the past year, I am astounded by how many colleagues, friends and strangers are cancer survivors or have been personally touched by cancer. It’s like a club that no one wants to be in, but has way too many members. I was hoping I would be doing the ride with Team Juno this year but we will be on vacation to celebrate my daughter’s upcoming bat mitzvah.
I first want to extend my gratitude to the Juno Obliteride team for 1. The work you all do here at Juno and 2. Spending your free time training, raising money and riding in the Obliteride and 3. Your passion and hope for finding cures for this disease. Having spent my entire career in oncology bench and clinical research, I understand the commitment, dedication and sheer luck and determination that it takes to identify effective treatments for diseases like cancer, but I never really grasped what life can be like for our clinical trial patients or the eventual beneficiaries of our treatments.
I’ll take you on my journey through this past year. On July 17, 2016, my husband, Dan, and I started the day with a challenging hike in Leavenworth, enjoying a night away while our two girls were at sleepover camp/summer trip. We decided to stop for lunch and went by a distillery tasting room on our way out of town. Dan had a few tastes of Crater Lake spirits, and I drove us to Issaquah, planning to make a pit stop there and switch drivers on our way back to Seattle. The ride from Leavenworth to Issaquah was uneventful and we stopped to drop by our rental house and take a quick break in Issaquah. About 15 minutes after departing from Issaquah, I woke up in the passenger seat to an EMT standing over me, pulled over on the side of I-90. I was placed on a rolling stretcher and transferred to the ambulance, and my husband directed the EMT to take me to UW. At UW Medical Center, I was asked about my medical history, what medications I was on, other neurological issues, what year it was, who was president, etc... Dan was still recovering from my tonic clonic (aka grand mal) seizure I just had-lips turned blue, foaming at the mouth, and I went unconscious-no recollection or awareness of what just occurred. He really thought I was dying and he pulled off to the shoulder of I-90 to try to give me CPR and call an ambulance. After an EEG and a CT scan at the hospital, the attendees came into the room to tell me the news-they found something on my CT-my right frontal lobe. Looks like a mass in my brain, but they needed to do an MRI to get more information.” I MUST BE HORRIBLY UNLUCKY. I eat organic and minimal red meat and fat, run half marathons, I don’t smoke, I leave my plastic dry cleaning covers at the dry cleaner, I take the pat downs at the airport going through TSA, I don’t put Tupperware in the microwave, I don’t miss a preventive care appointment with any of my doctors, I get my yearly mammos and mole mapping done. I’m slightly neurotic about my health. A lovely neurology resident stopped in to meet us when we arrived at UWMC and had been checking in on us throughout the night (she also happened to be a friend of a friend of mine), and she connected us with my neurosurgeon, Daniel Silbergeld, who we met with a day or two later. He said he had done thousands of these surgeries and that his main goals were to remove as much of the abnormal tissue as possible and to have me walk out of surgery the same way I walked in to surgery. He explained what would happen, how they would map from the imaging exactly what tissue needed to be removed. I had to decide did I want just the surgical area (basically half of my head) or my entire head shaved beforehand? I had to ask “what do you recommend?” Apparently most people have part of their head shaved, attempt a comb-over, and then it looks crazy, so they end up shaving off the rest. We found out on Monday the 18th that my surgeon had a last-minute opening on Thursday the 21st, so I took it. “Please get this out of my head as soon as possible” is all I could think of. I tried not to spend a lot of time thinking about the “what ifs” and scary outcomes of surgery. What if I didn’t come out like myself or come out? We had a friend pick up our 12 year old daughter from her sleepover camp and arranged for our 15 year old daughter to come into Seattle with my mother in law for the surgery. My mom and sisters came into Seattle from the Chicago area and South Carolina for the surgery. And after the surgery and the pathology work up, we would all know more about next steps.
Waking up in the hospital with 42 staples in my head packed in a tight ice packed skullcap is a very vivid and uncomfortable memory I have. I don’t remember a whole lot more about the time in the hospital or that week between the MRI and my surgery. Shortly after I woke, the icy skullcap was removed from my head, still pounding with the worst headache I’ve ever felt, and I started on dexamethasone to reduce the post-surgical swelling. Only clear liquids were allowed so I chose the (saltiest) beef broth. As you could imagine, that didn’t sit well (or for very long). Within a day, I was able to get up and walk around the floor with help, and the nursing staff in the neurosurgical ICU cheered me on. I AM SO LUCKY AND GRATEFUL! I was not at all aware that this was amazing progress. I was told that the best decision I could make at this point was to get out of the hospital while I was “healthy,” mostly to avoid nosicomial infections. To be clear though, the hospital was immaculate and the care that I received there and have received over the past year has been excellent. And I’m so fortunate to live only about a mile and a half away from UW Medical Center. I returned home about 42 hours after my surgery. A week later came my appointment to get out my staples-It felt like there were 200 staples. And they used something similar to a staple remover. That was the day that I met with Dr. Mrugala, my oncologist (who I discovered is a world renowned thought leader) and the radiologist to review the pathology, treatment recommendations and my prognosis. Dr. Silbergeld said that the resection was very successful and he was able to remove just about the entire mass. Often times a small sliver of tissue is left behind on one of the margins-just too difficult to remove without permanent impairment to the patient. I was diagnosed with a grade 2/3 oligodendroglioma. He said that the genomic profile showed that there were some deletions that confer a reliable complete and durable response in a high percentage of the very small population diagnosed with oligodendrogliomas. I AM SO LUCKY. I also learned that brain cancers don’t metastasize to other locations in the body, so I can expect regular imaging of my brain for the rest of my life. And I was told by my radiation oncologist that brain cancer is like scooping a handful of wet sand off the beach while the tide is coming in and out. You may think that all of the grains of sand are in your hand, but there are tiny grains that wash back out to sea-it’s nearly impossible to get everything and guarantee a cure. Apparently they don’t use that word with brain cancer. Seems like they only use it very sparsely when a brain cancer patient dies from something other than a recurrence. And I decide I WILL BE THE OUTLIER. I am an n of 1.
What I learned being on the “other side” of the consent as a patient, rather than someone who helped write consent language for cancer patients is that when you are presented with treatment options, you are truly given multiple options, unranked, all with pros and cons, and in my case, none with guarantees. Because a long term trial was enrolling, comparing the 2 approved chemotherapies (PCV and Temodar), would I be interested in participating? I’d have to have photon radiation, if I participated. Oligodendrogliomas are “rare.” My radiation oncologist explained my radiation options: Proton (preferred in children, less damage to healthy brain, and fortunately Seattle has 1 of 27 centers in the US) or photon radiation (the older type of radiation, more damage to healthy brain). My oncologist explained that radiation would be followed by PCV chemo (a regimen that has been used for “ages” and can be challenging to get through 6 cycles, 3 different chemo drugs-2 oral and one that’s administered via IV, worse side effects than the other chemo drugs in most patients, a special diet to follow) or given with Temodar (the more “user friendly” drug -taken orally daily, and could have fewer side effects in some patients-originally approved in the most aggressive glioblastomas, but less long term data in oligodendrogliomas). My decision to make now. “Wait, don’t you tell me? You’re the experts here.”
Thus began our search for second, third and fourth opinions, and lots of literature searching. At Juno, I am so fortunate-I had the help of a neurooncologist, Susan Snodgrass, and our company has a relationship with academic centers who are leading the field in neurooncology. Through Juno (Hans, Robin and Mark Gilbert) and Susan’s personal contacts, I was able to get my pathology slides and scans reviewed by 3 academic centers, and have a substantive discussions with neurooncologists at these centers, many presenting my case at their centers’ tumor boards. A family member was also able to get my information reviewed at a 4th center. One center recommended PCV (Procarbazine, CCNU, Vincristine), the second Temodar, and the remaining 2 recommended PCV and I also received a nod for Proton therapy’s efficacy and toxicity profile. Some consensus-wonderful! All agreed with my surgeon’s assessment of the resection-excellent! And my oncologist also felt that proton treatment followed by PCV would be my best course. This is what I needed to mentally jump into this next year of treatment.
Following my surgery, I had a month of recovery before starting a daily regimen of proton therapy. For brain radiation, each patient is fitted with a hard plastic mesh custom mask that is formed around the patient’s face and snaps down to the table to eliminate head movement and keep the field exactly where the radiation oncologist (and a team of physicists, mathematicians, etc…) calculated it should be. Am I prone to claustrophobia? If so, I should consider taking an Ativan or Xanax for these treatments-some patients don’t like their heads to be snapped to a table for 20-30 minutes. I consider myself cool as a cucumber. I think I’ll be okay. For 6 weeks, my husband, family members and friends drove me to my daily proton therapy. (When you have a seizure, you may not drive for 6 months, even on anti-seizure meds). I was told expected side effects from radiation are hair loss and the skin exposed to the radiation field feels like it is sunburned, nausea, fatigue, and headaches-most side effects build up by about 3 weeks and would continue through the end of proton therapy. The proton center, affiliated with the SCCA, but located near Northwest Hospital by Northgate was only a 15 minute drive from our house. Patients came from all over the state to get to the center. I AM LUCKY. My husband worked while I spent about 20-25 minutes in the treatment room. Music was usually whatever the prostate patients liked (50-70 year old guys like classic rock). The staff were amazing-I got to know them well! The center has comfy couches, a fireplace, Wi-Fi, drinks and snacks for waiting relatives and patients. Every day, I climbed onto the table, the technicians always brought me warm blankets, my head was snapped in under my mask, and then they lined up the bed, making sure that the field lined up with the marking on the top of my on my mask. A CT was taken each day so the radiation oncologist could approve the placement of the bed and proton machine. About 10 minutes in after the first field had been administered, we would go through the same drill so that the second field could be given. The bed would be rotated to align with the second marking on my mask-this time on the side of my head. I usually slept during my proton treatment.
3 weeks into proton therapy, all of the hair from just past my scar to my ear (basically half of my head) fell out over the course of a week’s worth of showers and taking hats on and off. It was really depressing to watch. By then, my hair was about an inch long. No nausea or headaches-at all. I AM LUCKY. Just fatigue and hair loss. The kind of fatigue that made me feel sluggish most of the time, required a mid-day nap a few days per week, and I now required about 9 hours a night of sleep per night. Previously I was able to get by on about 6 hours of sleep per night, with a 5am workout or 6 mile run before work. My sister would tell my doctors that I used to be superhuman and now I’m “just human” so really, I’m fine. (She and my husband are my biggest fans!) I tried to keep up with my running as much as possible and I was able to do a very slow 5k jog part of the way into my radiation with some dear friends and a slow jog/walk half marathon just as I finished proton therapy.
One month of rest and then chemo started. The two oral chemo drugs CCNU and Procarbazine cause nausea and vomiting (among many other fun side effects), Procarbazine can also cause allergic reactions. Vincristine, is administered by IV in my forearm (If extravasation occurs, vincristine can cause damage to tendons and ligaments, if administered near a joint and leakage from the vein occurs). Vincristine can cause peripheral neuropathy, foot drop and diarrhea. Each is administered on a different schedule over the first month of an 8 week cycle, and the second half to full month is spent getting weekly blood draws to monitor for hematologic toxicity and liver function. The plan was to have 6 X 6 week cycles, and patients do as many cycles as they can tolerate. This changed to 8 week cycles to allow my platelets and neutrophils to recover an extra 2 weeks, when I began seeing a new oncologist at UW. I was prescribed Zofran (an antiemetic), to take along with the CCNU and Procarbazine. My first cycle went way better than expected-no nausea, vomiting, severe side effects! I discovered that about 3-4 days after my vincristine doses, I get flu like symptoms (achiness, chills, and strangely, tooth sensitivity), but Tylenol, naps, and warm soup seemed to alleviate these side effects. I was expecting much, much, much worse. We were all bracing ourselves for a truly horrible 2017. I would question whether they were giving me anything, if it weren’t for my fluctuating platelet, lymphocyte and neutrophil counts. I was able to continue my running (very slowly-my hematocrit and hemoglobin levels sometimes dropped-so no endurance), yoga and pilates. Lots of walks and coffees with friends, which kept everyone’s, including my own spirits up. Beautiful and lovingly prepared dinners were brought to us weekly and cards, well wishes, and support from friends and coworkers, who rallied for us, visited and offered help with driving me to appointments, helping with the kids, helping Dan. I AM LUCKY.
Yesterday, I just started my 5th cycle of chemo. Besides an allergic reaction to Procarbazine during cycle 2 that landed me in the hospital (really just itchy hives), I have been able to continue exercising and feel healthy and strong! No major bumps in the chemo road. My oncologist, Dan and I decided we would go for the full 6 cycles, since my side effects have been minimal and manageable. I will finish chemo in late September and plan to be working nearly full time short of doctors’ appointments starting in early September. I am looking forward to returning to my “regular” life, but with new perspective. This last year has helped me to slow down and be thankful for all the special people in my life, appreciate how lucky I have been with my diagnosis and prognosis and my ability to tolerate the treatment, take notice of all the love and beauty and amazing friends and family that have supported us through this year. We approach our lives now with a “why are we waiting to do this” attitude, because none of us knows what life brings us around the corner.
Good luck on the ride Team Juno! Thank you!