April 22, 2020
Greetings dear friends, family and patients.
I am so happy to announce that it has been one year since my surgery. What a year it has been. I remember how scared I was taking my shower at 4am and not washing with the antimicrobial soap like I was instructed to do. I remember my family and many of my friends standing in the pre-op room with me before they wheeled me back. And my Auntie, who flew in from LA, just happened to know the attending anesthesiologist from their careers back in UCLA over 20 years ago. After that chance meeting, I knew everything would be ok. I faded into darkness and when I came back, I was laughing and smiling. In the post-op room they checked for the baby's heartbeat and it was strong. Now, that baby is 7 months old and thriving! I am forever grateful to the doctors and nurses that cared for me during that time. I was told that my group of supporters took up the largest area of the surgical lounge, and that still makes me so proud. I also heard that many sandwiches were consumed and pathways were etched into the floor during the 4-hour surgery. My loving family and friends were all with me physically and in spirit.
Last time I did an update, Theo was newborn, and I had just gotten my first MRI to check tumor status (post-surgical). It was found that approximately 80% of the tumor had been resected, leaving 20% remaining. The remaining tumor needs treatment and so far I had been offered different versions of chemo and radiation therapies. I had another MRI scheduled in January 2020 along with a third opinion.
Right before New Years Eve, I suffered 2 seizures in one evening. Up until then, I had been regaining my health and my independence. I was beginning to cook, I was breastfeeding full-time, and on the road to feeling pretty normal and not pregnant for once! The seizures were the worst I have experienced since the first one I had that sent me to the hospital. The difference this time, I did not lose consciousness. It was horrible because I could feel every muscle contracting, inside and out, which is extremely painful. I am blessed that my husband was with me and held me tight while my body was in convulsions. His presence and calmness allowed me to relax as much as possible until the end. Seizures are so frightening and it makes all the difference to have someone with you. My muscles seized to the point of severe fatigue and it set me back months. I was unable to use my right side, just like that. I was being helped up and down the stairs again. It's seriously so frustrating. And even though seizures aren't really harmful long-term, they took so much from me in my ability to be me and be a mom. My husband Robby and I were already getting extra help from our parents before that and when I had the seizures, our parents came together to help care for me and the babies full time. I went on another medication that made me sick and sleep for a month until I got used to it. I stopped breastfeeding Theo and thanks to some great moms, we were able to give him mother's milk a while longer.
I was pretty sad after that and heartbroken because I couldn't pick up my babies. It took about 6 weeks until I was strong enough to hold them. Between that time, I had my next MRI and third opinion. Results of the MRI were great, showing no growth since October. This was great news because I was not undergoing traditional treatment yet and brain tumors can be aggressive. The third opinion was at the University of Michigan. They were able to offer me another option. At that time, they were set to begin a phase 3 clinical trial of a new drug to treat brain tumors like mine. This method inhibits the gene mutation that causes the tumor to grow out of control. To qualify for the study, you cannot have received radiation and chemotherapy. You also need to be one year post surgery. I qualify and my family and I decided that was the most viable option for me moving forward. Back in January, the trial was set to begin in 3-6 months, but I have no further information on possible delays due to coronavirus. As of today, I am still scheduled to be a participant in the study.
Last week I had my regular 3-month MRI. The MRI continues to show no growth, but there was something new on this MRI. A very small dot was present, but it is so small there is no way to detect what it is. It could be tissue or it could be inflammation. We will know more at the next evaluation, but I am very pleased to make it one full year with just a tiny dot. Please know that I am still doing alternative treatments, which are helping me every day and are an essential part of my healing plan. One of the most helpful therapies for me is reiki. Reiki works with the electrical system of the body and it does wonders for by entire being. It calms my mind, relieves pain and improves function of my arm and hand, almost instantly. And it is performed on me by my mom which makes it that much better. In addition to that I get chiropractic, massage, CBD, THC, Vit D, Turmeric, Green Tea, MCT oil, olive oil, melatonin, Vit C and Rife frequencies. My current favorite is chaga mushroom tea. Without CBD oil, I can have a seizure, so it is essential to have in my system. I am so thankful for all the therapies I have access to. Cancer doesn't just go away and I want everyone to know that I am fighting hard to beat this.
Moving forward, I am happy to announce that my business partner, Dr. Lockwood has taken full control over Whole Family Wellness. I am proud and grateful to see her continue to build the legacy that we began together. It seems like just yesterday we were breaking our backs painting the office, getting it ready to open. We have poured our hearts and souls into taking care of our community and I know that will continue. For myself, I begin a new chapter of life. My goal is to become independent again and gain the ability to care for my children alone. My family is the highest priority in life and I have been given the opportunity to heal for them and overcome this life challenge together. I miss my patients very much and many of you I consider friends. My regret is that I was never able to give you a proper "goodbye". I plan to give my next update in 3 months to let you know about the trial and the MRI.
In closing, Robby and I would like to thank everyone for your financial, spiritual, and loving support for us. Cancer is not only difficult on the person experiencing it, but it impacts the entire family. Knowing that you care about us really means the world to us. We wish we could thank everyone individually. I'd like to end by sharing a few skills I have gained since last update. I am now able to apply deodorant with my right hand! I have started using a small knife. I stabilize with my left like a Samurai cutting through butter. I can hold Theo for short amounts of time. I can scratch my face! I can wash my hair with both hands. I am quite functional with my left and I always wanted to be left handed anyway. I miss drawing quite a bit. I can hold a pen but I don't quite have the control to write or draw clearly, yet. That's what I'm working on now; coloring and drawing with my right hand with the left holding for stabilization. I'm not a professional artist, but it was something that was important to me and I never realized until the skill was gone. Do things that make you happy, you may never get the chance again.
Love you all and stay safe, Chris