I just attended a planning meeting with the Camarillo Kiwanis club members to discuss planning for our upcoming 5K/10K that will be held in April (we haven’t set a concrete date). It is exciting to be involved in making the run a better one than the last. If you are interested in helping out in any way with the planning, marketing, or organizing of the event please let me know and I will update you with our planning meetings throughout the next several months. The next meeting will be on 11/18 at 7pm in Oxnard. Contact me for details.
The first weekend in October my wife, son and mother attended Camp Keepsake with me. The camp was in a great location in Ojai, CA. We applied to participate in the camp several months ago-the camp is for cancer survivors and their families. It was an amazing camp, the only downside was the fact that it was over 100 degrees during the day the whole weekend. It also dropped to 50 degrees at night. They had so many activities to choose from there wasn’t enough time to do them all. They even had spa treatments like massages, reiki, haircuts, manicures, facials, etc. They provided our meals, lodging and entertainment for the entire weekend.
The last night of the camp there was a ceremony where each cancer survivor and their family shared their hopes and dreams written on a paper scroll. Then after the share out everyone threw their scrolls into the fire-to symbolically go into the universe. Each year they collect the ashes and give them to all campers in a small vial to keep.
Each year Camp Keepsake has a theme-this year was country western “Blazing Trails”
The reptile lady from Oxnard was entertaining. My son really enjoyed touching the snakes and reptiles.
At my most recent doctor’s visit at UCLA in September I reviewed my MRI results. There was no perceived growth. Over the past year since I finished chemo I feel stronger and less fatigued gradually each month. For example I might take naps 2-3 days a week as opposed to every day. I do still feel more absentminded and out of shape since my surgeries.
My wife and I got to attend a dinner gala at UCLA called “Art of the Brain” in September. It was an annual fundraiser to raise money for brain cancer research. It was a fun event; we listened to String Theory and sampled yummy food donated by local eateries. There was also an art exhibit on display showing art work of brain cancer survivors.
The Thursday after the dinner gala at UCLA I attended my first group meeting for brain cancer survivors at the Westlake Village Cancer Support Network. They meet the first Thursday of every month from 6:30-8:00 (530 Hampshire Rd, Westlake Village 91361). I recommend the group to other brain cancer survivors. It was nice to be able to talk to people who have the same type of cancer and treatment. They also have a separate group meeting simultaneously for the caregivers of survivors.
The run on April 12, 2014 was a great success! We had a great turn out with more than 500 participants and we were able to raise over $30 K to fight brain cancer. The weather was perfect for running, not too hot or cold. It was nice to see so many brain cancer survivors participating in the event along with large groups of supporters. I look forward to doing it again this time next year. Thank you for your support.
On May 9th and 10th UCLA will have a free Brain Tumor Conference for survivors, family, friends, caregivers. I highly recommend it. You can even meet with their top neurosurgeons to discuss your case or get a 2nd opinion.
With the neuro oncology team from UCLA
Well it has been a few months since I’ve updated my blog and a lot has gone on since I posted in November. Since it has now been almost 6 months since I have finished chemo my body has been adjusting even more. I don’t feel the chronic aching throughout my body like I felt during chemo and the few months afterwards. My fatigue has gradually improved, so much that I have been able to increase my work hours to almost full time. I was also able to travel over the holidays to visit family.
More recently I have been busy working with the Camarillo Kiwanis to put on a fundraiser 5K/10K to raise money for brain cancer research. It will be on April 12th, 2014 in Camarillo (runtocurebraincancer.com). I appreciate all of the support of family, friends, and members of the community who have helped to donate to this cause. I hope one day this debilitating disease will be eliminated.
I completed my 12th and final round of chemo last September. Two months have passed and I am still feeling very lethargic each day. I feel like some strength and energy has come back though. It has been nice not having to deal with the whole process of ordering and taking chemo drugs and all of the other meds to counter balance the side effects. Despite my feeling tired all day every day, my family and I carry on with the usual daily routines and responsibilities that we have along with the occasional fun activities on the weekends. I have continued to work closer to my former full time hours.
Some of the activities that we have enjoyed in the last couple months have included taking Ian to Disneyland for the first time and participating in another brain tumor 5k at the Exposition Park in L.A. After going to 2 brain tumor association 5K’s in the past 6 months I am really looking forward to a local 5K in Camarillo that I am helping to put on- to raise money for brain cancer research create more awareness. With the assistance of the Kiwanis club, we will be having the 5K in Camarillo on April 2nd 2014.
My last visit to the chemo oncologist was in October. I had another MRI and the results have remained the same (no tumor growth). My doctor informed me that I would continue to get MRI’s done every other month for a couple years, then once every 3 months, then after 5 years once every 6 months, etc… We have appreciated everyone’s continued kind words of encouragement, prayers, and support as I have been beginning my road to recovery.
Alot has happened during the last 5 chemo treatments (May through August). I am about to start my twelth and final round of chemotherapy next week. My lethargy has progressively gotten worse over the course of treatment. Also my lack of appetite has still been an issue. Still, at each doctor’s visit the MRI results have not changed-the brain scan looks the same showing what the doctor suspects as scar tissue (although he says there is always the possibility that it is remaining tumor). My doctor said that it will probably be 2 months post treatment when I will notice a difference in my energy level, but it will still take much time to get back to feeling normal.
Despite my symptoms I still have gotten some physical activity including some short bike rides and running two 5K’s. One of the 5K’s was for the American Brain Tumor Association which I ran with my mom, wife and son at the L.A. Arboretum. I have been coordinating with the Camarillo Kiwanis Club in putting on a 5K in Camarillo to support Brain Tumor research. Luckily I have had a lot of contacts and support in making this possible at the end of spring 2014.
After a full year of being off work I started back at AppleOne in June. Luckily my employer has been flexible in allowing me to have a shortened work day (because of intense fatigue in the afternoon) and working from home during my chemo and recovery week. When my wife had to return back to work in August after her summer break we had to find a school/day care for our son. Luckily we found a nice Montessori which is down the street from my work.
During the summer we had many family and friends visit us from out of town. We also made a couple trips down to San Diego to visit with my grandmother (10 days before she passed away) and to go to her funeral services a month later during the weekend of what would have been her 91st birthday.