So much kindness, from friends, family, caregivers, and strangers …. hugs from the nurses, cards and care packages in the mail, dinners brought to the door. The unlooked for generosity and kindness has provide a lift to us that is impossible to describe.

Sometimes Ken speculates about the lives of the people we pass on the street. He sees others as being “carefree” because they don’t seem sick. On the other hand, as a person who is not sick, I can’t agree that they are untroubled. Most of the really awful sorrows I have experienced have resulted from outside forces — illness, death, abuse. None of these have been by my hand and I’ve looked pretty healthy (maybe a little tired),  certainly not infirm. Going into “why me/why Ken” territory is worse than useless but sometimes it is hard to shut off the inside voice that wants ANSWERS.

This week is Ian’s birthday. He’ll be 10 years old and wanted a sleepover with the two friends in whom he has confided. Noise and strangers are triggers that we work to avoid right now but two friends should be okay. I’m going to wear them out doing activities away from the house (Ian wants to go bowling at Fun Fest – for non-Pittsburghers, that’s a games & bowling alley with black light, cheesy but also fun). When we get back to the house, I’m going to tuck them into Ian’s room with movies and snacks, no video games, though; they are too noisy.  I wish … but maybe not. Wishing is just making a list of things that will make me sad.

Ian and I have been gardening when the weather is good and stripping wallpaper in the bathroom when it isn’t. We like the gardening more! The bathroom needs to be painted for sure but gardening — spreading mulch, planting flowers, trimming the roses — feels like an oasis of positivity in the desert of our days.  We are all struggling with the relentlessness of cancer treatment. The chemo symptoms are getting continuously more uncomfortable (chemo treatment is cumulative which just means the patient should appreciate how they feel this time because next time they’ll likely feel a little or a lot worse).

The Erbitux rash on Ken’s face is raw, like he spent 6 hours watching a soccer tournament in direct sunlight without sunscreen. The doctor said he can’t use anything on his skin that contains alcohol (we discovered too that it burns like mad crazy on his skin). I have never paid much attention to the ingredients of my skin care regimen but now I know that nearly every popular skin cream contains alcohol. We found one (Bag Balm) that seems like a good possibility but he can only use it at night (it’s really thick and sticky).  We’ve got a Neutrogena face cream and Udderly Smooth skin cream (its packaging is cow-spotted, how great is that) on rotation right now during the day.

Next week is chemo #6 and our monthly doctor appointment. I assume we’ll also schedule the PET scan at that appointment. We can’t tell whether the visible tumors are improving. Some days it feels like they are growing; they don’t seem to be shrinking. Will the PET scan show the cancer responding  to treatment? I guess we’ll know better in two weeks or so.