For a while, between 3 and 5 p.m. he was getting completely exhausted and sleeping, then waking up at 7:00. Luis and I flip-flopped our schedules, showering, preparing lunches, etc. for the next day first, then helping Rene with his routines and reading bedtime stories later after he woke up. The naps were necessary. He'd look awful before sleeping, then awakened looking refreshed and fine. Then he went through a stage where he was pale and his skin looked thin to me when he was sleeping (the effects of low hemoglobin). He's also been sweating during the first hour of sleep. That scares me, too.
Now Rene can "make it" until 8:00 at night, but he's still very tired. He is maintaining his usual active lifestyle, though he's really interested in watching Pink Panther. He can watch HOURS of Pink Panther on Netflix. Experience tells us that when he's really interested in TV, he's feeling tired, though he never mentions it. Once chemo was over this summer, TV was of little interest to him.
Luis and I were a little surprised at how much we'd forgotten about the cycle of chemotherapy. Rene had blood work every few days after chemo to see if he needed a transfusion and how long to continue his white blood cell stimulating shots. Luis had to take him over to Victoria general almost every other day. The appointments take hours because they draw the blood and wait for results in order to do the transfusion, if necessary. It's actually, really wonderful because Rene's care can be determined as needed--and right here in Victoria. Luis, in fact, isn't going to work much between treatments. Oh well, it's a wonderful opportunity for he and Rene to spend time together and for him to be in greater contact at Rene's school.
They had a great time sledding on the snow day. After sledding for 4 hours straight Rene declared to Luis, "This was the best day of my life."
Rene's been getting some good Grandpa time, too. His Grandfather is staying with us for the week. He brought two nerf guns and 200 foam bullets with suction cups on the tips. It's been fun playing with those. Rene practiced and practiced and was able to turn on the light by hitting the switch from across the room -- and those guns are hard to aim!
I'm being brave and reading a book called Love, Medicine and Miracles by Bernie Siegel. It takes a lot of guts to read because Siegel's life's work is about helping seriously ill (adult) patients improve their lives and outcomes through personal change, empowerment and healing. He boldly makes connections between feelings (good and bad) and illness and health. My goal is to use the book to look for opportunities to fully support Rene. I have to keep focused on the goal and not get sucked into guilt or regret about the normal troubles faced by all parents and children -- children who don't get cancer.
I've been playing Rene and I a healing mantra from Kundalini Yoga, that is very soothing and centering.
Additionally, I've been trying a simple meditation and it's been quite helpful in keeping me out of fear -- except sometimes at the bedtime hour. Last week, though, it was hard to be me. I just couldn't feel happy much of the time. Finally, I gave up and decided to think of it as an emotional "winter." In winter it seems like things aren't alive, but development and readiness is happening out of sight and bursts forth in spring. I may have been fighting a flu virus because my body was aching.
What a roller-coaster ride. The other night I suddenly was able to sleep after struggling with it for days. It turns out a friend was sending me Reiki at my bedtime. Ahhhh. Relief.
I won't say it's easy. It takes work to keep going and keep enjoying life, but all in all we're OK.