In August of 2005 Norina went to Spain with other California State University students to study at the University of Granada for the 05-06 academic year. She loved everything about her time there: the city of Granada, her program, her classmates, her apartment-mates, and hiking in the surrounding mountains. Norina had been having headaches since the spring of ’05, but during that fall in Spain the headaches, which we assumed to be migraines, became terrible and she began to have difficulty with her vision, as well.
Knowing that she would most certainly be missing her brothers acutely after four months away, Norina had made a plan to fly home for Christmas and New Years. We made plans for her to have the headaches and vision problems looked into and addressed while she was home. On Friday, December 23, during a routine exam, our optometrist urgently referred Norina to a neuro-opthamologist, and within a few hours Norina had a CT scan that showed what could only be a large tumor in her brain. The next day was Christmas Eve and our family had a sweet, but also considerably shell-shocked dinner with a few dear friends, and Christmas morning was a quiet, beautiful, fun and funny, precious family morning. Because of the holiday, we had to wait until Tuesday, December 27 for a more detailed MRI scan and meeting with a neuro-surgeon. That scan confirmed that Norina had a very large tumor in the right temporal lobe. Surgery was set for Friday, December 30 at Stanford Hospital.
The surgery went well. The surgeon was able to take 80% of the tumor and Norina recovered quickly. The pathology report described an unusual type of glioma of low to medium grade. Neither radiation nor chemotherapy were called for at that time. We were all so relieved to be told that she wouldn’t need any treatment, other than scans every three months. Over the next weeks, Norina experienced terrible side-effects from the steroid used to reduce the pressure from swelling in her brain pre and post operatively. Those of you who were in touch with her during this time can probably recall how changed she was by the medication. I have heard her express over the years, and as recently as just a few weeks ago, that those side-effects and the havoc they created on her friendships and her life in general, were the hardest aspect of the entire five and a half year experience.
Just a few weeks after her first surgery, Norina enrolled in classes and returned to SFSU in hopes of quickly finishing up her BA. Three months post-surgery she had a scan that gave great news: no changes. Three months later, in June of 2006, her MRI showed growth again in the same site. This was crushing news. Her same surgeon scheduled an immediate resection of the new growth. The surgery went well again. Her surgeon was able to remove 90% of the tumor, and Norina’s recovery was excellent. The medication that had given her so much trouble earlier in the year was used very briefly for the second surgery, and gave her no trouble at all. This was a huge relief to her, and we were all very grateful that she did not have to relive that nightmare.
The results from the pathology report a few days later were very grim: glioblastoma multiforme (GBM grade 4), one of the most aggressive, and least effectively treatable (at the time) of all cancers. Very shortly after her surgery, Norina began six weeks of daily radiation in conjunction with an oral chemotherapy. This combination caused severe fatigue and some depression. Norina lived at home during this time. At the conclusion of the six weeks an MRI showed recurred growth of the tumor. We contacted the doctor at UCSF that Norina has been with ever since that time, Michael Prados. He and his team enrolled Norina in a clinical trial of a new chemotherapy called Avastin which was already FDA approved for several other cancers. Norina had infusions of Avastin with a second chemotherapy every two weeks for 15 months. Her response to this new treatment was immediate and excellent. Within two cycles there was no tumor growth showing on her routine scans. Norina learned to live with the fatigue caused by the two medications. For someone who had always been so very energetic by nature, it was a big adjustment, made remarkably gracefully.
During this period we made several wonderful trips out to South Carolina to the Meher Spiritual Center (see the page about Meher Baba). Norina volunteered in East Palo Alto in a Boys and Girls Club after school program, did the course work to become a licensed massage therapist, and danced as much as possible. In December of 2007 Norina and I traveled with a very dear friend to India for three weeks. It was arduous – so far to go immediately after a chemotherapy infusion. It was well worth it – a wonderful trip, and an enormously important pilgrimage. Upon returning, Norina’s doctor thought it would be the right time to give her system a break from the chemotherapy, so she went off treatment as of January, 2008.
It took most of the next post-chemo year for Norina to feel her energy fully restored. For the next two years she worked as a third grade classroom, and after-school childcare assistant at Peninsula School (where she and her brothers all attended) in Menlo Park. Norina decided to re-enroll in classes at SFSU, finish up her BA, and apply to graduate programs. While in school, and also taking the necessary exams, prerequisites, and completing the applications for teaching credential programs, Norina lived in San Francisco in a lovely house with terrific roommates just below Bernal Hill. She graduated from SFSU in Dance in the spring of last year, and in August she moved to Oakland, into another lovely apartment with wonderful housemates, and began the single-subject (elementary) teaching credential and masters degree in education program at Mills College in Oakland. Norina loved this challenging and dynamic program, her fellow students, and most especially, her student teaching with with third graders in a bilingual classroom at Bridges Academy in Oakland. Throughout this time Norina has continued to dance as much as possible, focusing lately on Tango.
In October 2010, Norina’s routine scan showed a recurrence of tumor growth. This was the first growth showing on a scan since 2006, a most remarkable fact given her diagnosis. Two and a half years off treatment, with no recurrence was a profound gift. Norina resumed a series of different treatments in October. She finished up the Mills program fall semester of student teaching and course work, and took a leave from the program for the second semester. The treatments since October have caused fatigue again. Norina sublet her room in Oakland for the summer in order to come live in Menlo Park and teach kindergarten and dance again Peninsula’s Summer School. She was able to teach for the first two weeks in late June and early July. She completely loved being with the children, then came home and rested each day. By mid-July the fatigue from her treatments and as we learned later, from the new tumor growth, made it impossible to continue teaching.
On Wednesday, July 27 Norina and I went up to UCSF for her clinical trial treatment and ended up staying two nights, as Norina’s fatigue had become acute. She was put on the same medication from years ago to relieve the swelling in her brain and it helped immediately, making it possible for her to be awake and alert and able to spend time with so many beloved friends and family during her final two and a half weeks.
On Thursday Norina had an MRI and later in the day her doctor came to her room in the ICU to tell her the results. Jeff and I were with her. He told us that the scan showed both recurred and new growth. He told us the the tumor was growing quickly and that Norina would not live long. Her care from that time on would be for her comfort, rather than to fight the cancer. Norina immediately expressed concern for her family and loved ones. We reassured her that we know that wherever she is, she will always be all right, and that we will love her forever and will find a way to be all right, too. Norina’s doctor assured us that, due to the location of the new tumor growth, Norina would have no pain and that the medication which had caused her so much heartache in 2006 would not cause any difficult side-effects going forward. Hearing these facts felt like a profound blessing at that most difficult time. We talked about the option for coming home for hospice care here. Norina’s doctor was very supportive and informative; he was most sensitive and helpful in preparing for this transition.
The following days and weeks have been documented on this site, and so beautifully embellished by all the wonderful family and friends who have added postings. I’ll just add that the location of the new tumor growth had also caused changes in Norina’s voice and facial expressions. The changes had come gradually for us, along with the profound fatigue, but was new and potentially unsettling for people who hadn’t been in touch for a while. I asked Norina if I could share information about these changes with people who would be calling or coming to visit, and she said Yes, and thanked me: In addition to being very fatigued, and taking little pauses in the conversations at times, Norina’s voice and facial expressions sounded and looked different than what we’ve all been used to all these years. This was due to the location of the tumor growth and swelling there. Her emotions, thoughts and sense of humor were all intact, as always, but her emotive mechanisms were very much calmed down. Her voice had an even, ‘flat’ quality even when she cracked a joke (we’re all used to her usual dead-pan delivery, though, so her jokes were still very familiar, and very precious and funny). She didn’t laugh or cry at all anymore, though she expressed her thoughts and feelings verbally very articulately. She smiled only occasionally. Remembering that the location of the pressure was also the reason that Norina had no pain or medication side-effects, we are incredibly grateful.
with love and gratitude,
Terra
(edited 8/19/11)