I have gotten some very sweet, supportive feedback about my writing; people often remark about my honesty and how open I am in sharing what I’m going through. Then I had a talk with my dear friend Beth, who is reading along from afar, and she was shocked to hear that I spent 9 days in bed. It’s possible that I’m not actually as honest as it seems — although I already knew that I chose not to share much about things that were happening in the bathroom, and still won’t be, because not matter how much I want people to understand what it’s like, no one wants to read about how lame Imodium is against chemotherapy any more than I want to write about it. And you certainly don’t want to hear me complain about getting my period two days after the first treatment, do you?
But I do still aim for total honesty, even while I am constantly steeling myself for strength and courage and positivity. It could all be so much worse: no vomiting, no bad blood counts, a decent appetite, no metallic taste, only two mouth sores… only fatigué and the deep sicky exhaustion that kept me in bed for 9 days. It’s like the flu you can’t kick, when the worst vomits are over, but you can’t get out of bed, when you can’t quite muster the energy and focus to make yourself a cup of tea, when a visit to the bathroom is the most excitement you can take and you have to crawl back under the covers and hope you can fall asleep for a spell, to pass another couple hours and get that much closer to getting past it. But it goes on for another day, and another, and then 9 days go by. And you spend one glorious day outside not just your bed but even your bedroom and the sun shines on your face. Day 10 was really good.
I’m now at Day 18, 4 days from my next treatment. My hair started to come out over the weekend, I tried to keep my hands off it to stave it off so I could get through all the stuff we had planned. 2 trips to Cinnabar theater for Tess’ play, dinner out Saturday while the kids were at a party, Sunday matinee of Dezi’s new show, and Sunday night performing arts meeting to get ready for the fall show. Didn’t want to be bald for any of it, and I wanted to mohawk my hair as Rennie suggested. He now claims it was a joke, that we should have matching mohawks and go “strutting down the street” but it sounded great to me. John shaved it off this morning, and midday I spiked it up for a photo shoot with my incredibly talented friend Liz (so there will be more super lovely pictures to come). It’s been fun today, not sure how long it will last, as when I was spiking it up it was still coming off in my hands, but I’m going to enjoy it while it lasts.
I had a good visit to an Ear-Nose-Throat doctor, who cauterized my nose in the hopes that I won’t have twice-daily bloody noses during my next convalescence. I’m also holding out hope that it won’t be as bad this time, maybe it’ll only be 6 days in bed or something. Now I know what to expect, and I am going to ask in advance if there are perhaps any supplements that I can take that can maybe stave off the other bothersome side effect of neuropathy. The steroids seem to cause a little of it, which mostly felt like restless leg syndrome or something: lying in bed my legs would want to jump and twitch, but there was also a dull sense of numbness. The numbness got stronger in my forearms, sometimes making my feel like I was lying down wrong and depressing nerves somehow. Again, could be worse, it wasn’t pins-and-needles numbness, and it has let up, but it was annoying and sleepus interruptus. Maybe there are things that can help. Maybe it won’t be as bad. I have to hold out hope, as I head into #2. Strength, courage, positivity. And a mohawk for good measure.