Here We Go...Again.
Updated: Jun 14, 2021
“If you ask what is the single most important key to longevity, I would have to say it is avoiding worry, stress and tension. And if you didn't ask me, I'd still have to say it.” - George Burns
There are some changes and updates I would like to post since, again, I've neglected this thing...
1. Following my surgery in October, I started experiencing new symptoms in December - numbness in my left arm and side above the waist. I also was having more frequent seizures where my left hand and arm would shake uncontrollably. Turns out I had another recurrence that grew in a different direction than normal, explaining the new side effects. Due to this, I opted for surgery. Dr. Lee (my awesome surgeon) did say it wasn't absolutely necessary, but to regain some quality of life, the surgery would help and pressure caused by both my tumor growth and the dead cells from the laser ablation would be removed. I was starting chemo and I wanted there to be less cells for the chemo to effect. January 7 I had another craniotomy and my side/arm have slowly regained feeling (not 100%, more like 80-90%) and I haven't had any seizures since! I am still having issues with functioning of my left hand (fine motor skills) and am attending occupational therapy twice a week. There has definitely been improvement but will be a longer road than someone who has had surgery and is working on regaining strength. Still typing with one hand when I have a lot to type. I also currently can't put my hair in a ponytail. My solution? Haircut!
2. I made the decision to leave my job that I loved. This was difficult, it felt as though I was surrendering to the disease. Meridian was all I knew for the past 6 1/2 years. It was great but my focus is on my health and eliminating high stress environments - unfortunately my job was one of those. I notice when/if I get worked up that I feel it in my left arm and that worries me that I can start having seizures. If I went back to work, this would eliminate a LOT of time that I could be working on myself. I have been feeling really good since then - not just because I left my job but because I have all this time to attend appointments with many doctors. I now see a Naturopath, a nutritionist, acupuncture doctor, attended an 8 week program on mindfulness based stress reduction, and am looking for other doctors/programs to promote natural healing of the body. After reading a few books and watching documentaries, I am a firm believer that the body has the power to heal itself if you give it the right tools.
3. I was generously given a spaghetti dinner fundraiser to help raise money for bills and to allow me to continue doing things to maintain quality of life (I am going to NYC in April to stay with Todd while he's there for work). My sister uses the day care at her church, they offered to do this out of the kindness of their own hearts! This fundraiser exceeded all expectations and was overwhelming in a great way. I realized I don't like to be the center of attention but made it work. I met so many new people! Word spread fast to all of my family, family friends, extended family and people from the church. So many donations! Gift baskets, food, decorations, you name it! The room was filled with so much love and positive energy. I will be forever grateful and thank everyone who came out and donated from the very bottom of my heart.
4. Two weeks ago I attended a patient advisory council in San Diego for a company, Tocagen, that is working to develop treatment for brain cancer. This was an amazing experience. I was able to not only advocate for fellow brain cancer patients but was able to help map out the entire patient journey. One eye opener was that I have the best care team. Henry Ford's Hermelin Brain Tumor Center (HBTC) and everyone there makes you feel like family, not just a number. It was hard to hear from the other patients and their experiences that were not as amazing as ours (there were 3 of us representing HF HBTC). I will never take for granted the incredible doctors, nurses - all staff who make me feel hopeful everyday. One of my fellow brain friends and I (mostly her) wrote up the experience in greater detail. She has it posted on her blog so please take a minute to read it:
Keep on keeping on and take control of your life to stay healthy and maximize your quality of life because, trust me, it's a great feeling. These changes and new experiences have increased hope in healing and living a long life.