I wake up early today, around 5:30am. The light is just starting to intensify outside and the birds are singing up a storm. Tomorrow is my first appointment with an oncologist, Dr. Howard Safran at Miriam Hospital. I have only one more day until I know there is some sort of plan in my life, and end to the limbo that I have been living in.
My mornings have settled into a routine, not anywhere near what they used to be, but it is comforting. I get things as ready as I can, and then Sara comes over and picks up the slack. Alex is still helping, and an extra adult tends to get in the way, so I stay upstairs until they go for a walk. I decide to join them.
Walking with the kids is barely exercise. We stop and look at flowers and buds, mosses, insects, bird droppings, dog poop. It is a very slow pace, but we get a nice dose of sunshine while we explore the world that is my neighborhood. I am feeling stronger, and these walks feel just right.
When we get back, the kids play outside, and I make myself some lunch before going upstairs to wait for the visiting nurse. She comes every three days to take my vitals, and to help me change my bag. I wait by the window so I can see her come, she is scheduled to come during nap time and I don’t want her to ring the bell.
When you get a colostomy, you need bags. Companies send you samples of their bags in nice shoebox sized packages, full of all the things you are going to need. I have two boxes, one from Coloplast, and one from Hollister. Hollister seems to be an inside joke to me. A very glamourous name, for a very unglamourous product. I haven’t really looked through these boxes yet, I have been working off the supplies they sent home from the hospital, so it seems like a good way to pass the time now. There is powder, cream, filling putty, bag deodorant, a belt. There are scissors, travel bags, waste bags and mirrors. It is an incredible assortment of stuff.
When Kim, my visiting nurse comes, she checks on my bag. It has such a good seal that we decide to leave it on, just in case the doctor wants to look at my stoma tomorrow. You can change your bag everyday if you want to, but constantly pulling the bag off of your skin is pretty harsh. It can cause irritation and infection. I would prefer to do it less, rather than more. Since a nurse had come and helped me change it on Tuesday, it looks like it will be okay. We review how to change the bag. I have done it a couple of times now, and am feeling more confident about it. I think I can do this.
Of course this all exhausts me, and I need to have a two hour nap. This seems to be a requirement this week.
The phone awakens me, it is the Cancer Center from Roger Williams Hospital. They want me to come in tomorrow. I tell them I already have two appointments for tomorrow. They schedule me for one next Wednesday. They were supposed to be my first opinion in this ordeal.
Steve comes home from covering the hunger strikers at the statehouse. He has brought me a card signed by all the strikers and some of their supporters. I am so touched. Here are women who are trying to get paid fairly, and giving up food to bring attention to their dilemma, and they have taken the time to think about me, someone they have only heard of from Steven, and never even met. It makes me cry.
When I finally go back downstairs, all the kids have been picked up. Ayla and Chauncey have stopped by to say hello and have brought their dog, Powder, over to visit me. She has been attending puppy training class and I want to see the new tricks she has learned.
Ayla stops by frequently to check on me. She works full time as a manager at Pastiche, and then comes over to see if there is anything I need. She will drive me places or bring me things I need, but my favorite thing is when she comes by for dinner. She is so lively and has such great stories to relate, it always brightens up dinner. She often brings Chauncey and Powder along too, which make for a merry party for sure.
This evening, I have quite a few visitors coming over, so I end up eating my dinner on the couch while spending time with friends. My family eats in the kitchen without me.
It is a busy, enjoyable night. Of course by nine, I’m exhausted.