My favorite time at the hospital is some time after 9 p.m. Everyone has gone home for the day, including most visitors. The hallways are quiet and inviting. This is when Mark and I go and do laps around the unit, sometimes stopping at the movie cart to see if there is anything interesting that we might want to watch to help the hours pass.

I didn’t sleep very well last night and during those awake hours I thought maybe I would share a bit of our hospital living experience. I’ve had quite a bit of experience over the past years.

Sleeping: When Greg and the girls spent time at Doernbecher Hospital there was a twin size bed built in to each room for a parent. We learned right away that we would need to bring a foam pad to survive the nights and as soon as I learned to let the nurses take care of my children I found myself sleeping quite well. Huntsman also accommodates a family member. There is a couch that can become a bed though I don’t think it is quite as wide as a twin mattress. One night on that was all that I could take. Fortunately Natalie had left behind an old foam pad from college. We kept meaning to throw it away, but I rescued it and now it rescues me. It took me a few nights but I have learned that I usually sleep quite well if I back the recliner right up to the bed by my head. This helps me feel that I am not going to fall off the bed, but more importantly it blocks the lights when the nursing staff enters the room at all hours of the night. Most rooms also have a chair that I can use to partially block the very bright lights from the bathroom as they go in and out all night. Last night a CNA left the door open. I was too tired to go shut it myself so I just turned away. I have three pillows, just like at home. At first I tried to sleep with two but that means running into the wall or the recliner. 

When our room over looks the city the bathroom light isn’t a problem. Facing the mountain means trouble with the light, but it has a bonus. The window sill here is deep and it is cold. I often wake up with my hand reaching up and resting on the sill to cool off. This week Mark’s room was a sweltering 78 degrees. Hahaha, at home our nighttime heater is turned down to 59, we crack a window and use a fan… so 78 degrees is pretty awful. Mark is cold so he didn’t mind. On our previous stay I managed to lower the thermostat a few degrees (I don’t think I broke it…) and then I just looked innocent when someone mentioned that our room was cool. I gave Mark an extra blanket.

Another secret weapon I bring is my little white fan. This has made all of the difference for our past two stays. Seventy-eight degrees is bearable with a fan at the head of my bed and the white noise is a bonus. Two ibuprofen before bed is also proving to take the edge off – let’s face it, that bound-for-the-trash foam pad isn’t quite the same as home. I fully appreciate it anyway.

Decorating: We loved to decorate Greg’s room each week during those seven months of hospital stays in Portland. During the five weeks at Hope Lodge I brought in area rugs, family pictures, artwork, fake plants, etc. Our room was so cozy. I hadn’t thought about it for Huntsman, but when the kids brought in the lights and snowflakes in December I remembered what a difference a few decorations can make. I forgot about it until we got there, but during the next two weeks I’ll have to print off a family photo and maybe add a plant to my hospital bag.

Are you wondering how many trips up and down the elevator, to the car and back, it takes me to set up and take down our room? It doesn’t matter, it is worth it and I like the exercise.

Exercising: The concept of a week in a hospital with nothing to do sounds like a wonderful time to get a lot of things done. It is absolutely not. It doesn’t make sense, but when we walk through those doors it seems that we leave our energy outside. Brains turn to mush. Mark calls it the hospital time-suck. This is not a time for study – this is a time for a simple novel. Lately I’ve been relying on John Grisham and Mark leans toward Louis L’Amour. I wish it were not so… but it is. At least it is for us.

Mark gets exercise whenever I can coax him out of bed to walk in circles around the unit. I have a little path I like to take through the hallways. This week my phone told me that it is about 3/4 of a mile. Ideally I would take this walk several times a day. I manage at least once. I also found a little 7 minute workout app to use this winter. While at the hospital I can lock myself in the “family bathroom” which gives me just enough space – unless someone has recently showered and the floor is wet. Imagine how embarrassing it would be if they had to break down the family bathroom door to rescue the lady who slipped on someone else’s shower water and fell while trying to march in place?? No thank you.

Eating: Back in the day at Doernbecher – eating was a tricky business. As chemo progressed any exposure to a cafeteria tray brought on all sorts of illness for Greg. We had to eat secretly and not mention food in his presence. However – if we could get him downstairs to the delicious chef-created meals in the [eating area] – I cannot recall the name… Everyone was happy. Huntsman also has a bistro upstairs that is quite good. This is the source of my roast beef panini that I ate so much of following Mark’s surgery. However I don’t like eating out too often so I have decided to take advantage of the family kitchen and bring meals from home. A half-gallon of milk and cold cereal is just right for breakfast. This week Mark gave up on hospital food (don’t talk to him about it) – but was able to eat some of the homemade soup that I brought. We had family and friends visit that also brought in some outside food that he tolerated quite well. The cafeteria just cannot compete with Chinese food and Italian pastries (thank you again!!). FYI – the potstickers and pastries were eaten on different days! 

There you have it – a day in our life at the hospital. Well, Mark lays in bed getting waited on hand and foot – until his wife drags him from bed to walk in circles. Hahaha.

He also manages a few hours working on his computer which is amazing as he has fresh poison pumped into his veins every 22 hours. In the evening we like to find a movie and appreciate finding a series which we save to watch together at the hospital (or Hope Lodge). I think I will be bringing meals from home for both of us from now on so it will be nice to eat together. For now we will remain on this four-day/three-night schedule.

When we are home it is hard to imagine that we have to go back there. When we are at the hospital it is hard to imagine that we will ever get home again. Home and hospital – they are coming together to create this unusual chapter of our lives. You may wonder why I don’t just drop him off and pick him up four days later? First of all I know cancer patients do better if they have family with them. Mostly I don’t want to miss out on the fun. We are glad that we can experience this adventure together!