A lot has happened in the last few weeks. It's been a little over a week since my last whole brain radiation treatment and we're in a holding pattern. The swelling in my brain hasn't changed enough for me to go off the steroids. And they will not let me do the infusion immuno-therapy if I am on steroids. So...now we're trying low dose chemotherapy while we wait for my brain to heal. The chemo will hopefully slow all the other tumors from growing until I can get back on the immuno-therapy.
We don't know how well the whole brain radiation worked, but I am starting to experience the side-effects that they predicted. Physically, I am still fatigued, have limited stamina for daily activities, and my balance is off. We've installed a chair lift for me to use up and down the stairs between the main floor and my bedroom. This makes me feel a bit like Mary Poppins, riding up and down the banister. All I need is a musical accompaniment and a talking umbrella.
Cognitively, I have noticed some changes in my short term memory recall and my reading/writing abilities are diminished. For example, I struggle to remember how to spell common words and it takes me a lot longer to read and comprehend. In fact, I have started having my mom take dictation for the blog; so if there are typos, it's mom's fault, not mine.
Not surprisingly, my hair started to fall out in clumps. For awhile, I just had wisps of my longer hair over top of the balding spots. But then I was resembling Smeagol from the Lord of the Rings, so we cut it short. Now I'm accessorizing with scarves and might even try a wig.
I was never in denial that I had cancer, but now the reality of the diagnosis is hitting pretty hard. With all of the physical/cognitive limitations, I find that I cannot ignore the fact that I'm dying. Emotions are running high right now. Tears are common, as my emotions tend to come through my eyes. That's okay. But I'm grateful that I have energy to spend time with friends, enjoy my family, and look forward to a few day trips in the next couple weeks.
Prayer Requests:
1) Please pray that the chemo drugs work to stall the tumor progression until I can get back on the immuno-therapy.
2) The swelling in my brain would go down ASAP and that I would not have tremors or another seizure.
3) Please pray for PEACE and ACCEPTANCE of my diminished independence.
4) That I would be able to tolerate and manage the side-effects of the chemo drugs (nausea, fatigue, stable blood cell counts, and protection against other illnesses, since the immune system can be compromised)
Thank you for the love and support!