I keep telling myself to lower my expectations and be kinder to myself. I’m healing faster than anticipated, largely due I suspect to ALL THE THINGS (now 67 different healing or supportive or cancer-fighting things — we counted) I’ve been doing for nearly three years now. Healing faster means I’m having what they call “healing reactions”, which is basically me not feeling very good a lot of the time (low fever, strong emotions, nausea, sense of hopelessness, bleh).
Contrast these healing reactions with feeling SO MUCH BETTER because my brain is no longer full of tumor and swelling from the tumor. I feel both better and worse than before surgery. This whole thing is quite remarkable. I never thought I would say this, because I was so scared beforehand of having a craniotomy, but having one was an awesome decision. I still stand by the choice we made to have laser ablation surgery in February instead of a craniotomy, but had we known then that the ablation would fail for me, we would have chosen a craniotomy.
This cancer healing thing is a long and arduous road. Don’t let anyone fool you into thinking that there is an easy cure. There are no easy cures for cancer. For me this is lifelong. I will never be able to let my guard down on this. I will always have to be vigilant. Cancer is smart and we have to be smarter.
Things I look forward to:
– The beach
– Being among community
– Yummy hugs
– Resuming my yoga practice
– Gaining back the weight and muscle tone I lost these past 9 months
– Driving. I love riding shotgun with my beloved, and I also love my 20-year-old Mazda Miata that I last drove in October 2014
– Loving my beloved (even more – there’s always room for more!)
– Whipped cream
– Writing a book with about our improbable success conquering cancer
Aren’t those awesome things? I’m pretty stoked. Especially after having been so suppressed (because of excessive brain swelling) for so long. We didn’t understand how much I was affected by that until just a few weeks ago. Brain swelling = Very Bad & Dangerous.
Things I choose to encounter over the next several months. I deal for now with everything on this list by acknowledging that 1) I choose to do it and 2) I’m scared it will hurt and/or feel bad in some way but I won’t let that stop me from doing it:
– Gamma Knife radiation this Thursday July 23, to zap the other, untreated tumor in my brain as well as the site of the tumor removed in my brain surgery. Gamma Knife has historically made me super tired for a week to ten days, about three weeks afterward. Plus the thought of a metal frame (part of the Gamma Knife process) being screwed to my head is quite unappealing right now since my head already hurts and feels weird and partly numb.
– Safe mercury amalgam removal from about 10 of my teeth (so much sugar as a child), using a biological dentist skilled in mercury removal. We think this will run $8000 – 10,000, which we don’t yet have. Mercury amalgam fillings are highly correlated with systemic disease such as cancer.
– Immunotherapy, via infusion. Likely to make me super tired for months.
– Vaccine trial based on a personal cell line created from a piece of the tumor that was in my brain. HOW COOL IS THAT! And it will undoubtedly affect me in some way, because that’s the whole idea – to get my body to do what it knows to do and go after the cancer.
I look forward to the day I no longer hear my pulse beating in my left temple, from inside my head. It squeaks. Disconcerting.
Here is life advice from a person who has flirted with death for three years. Life is full of wonder. Take in every moment. Don’t let joy pass you by. Use the good sheets, the good dishes. Eat life! If you love someone, tell them.
I love you.