Yesterday, even though we had a flat tire when we left the Cancer Center, I didn’t feel utterly exhausted when we got home. I was extremely thankful that we were able to get the tire fixed so quickly and weren’t stuck at the side of the road in below freezing temps. Today, however, was a rather difficult day, probably the most tiring we’ve had so far. Besides the fact that JJ feels sicker during each cycle, we all also feel more tired as the arduous schedule continues. We have to dig deep inside to find the strength to continue.
Today I felt that this was a day in which we needed to have sisu, a Finish word EJ taught me years ago when we were going through some difficult times. Wikipedia says sisu is “loosely translated into English as strength of will, determination, perseverance, and acting rationally in the face of adversity. However, the word is widely considered to lack a proper translation into any other language. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is sisu…Sisu is described as a psychological key competence which enables extraordinary action to overcome a mentally or physically challenging situation. Sisu also contributes to what has been named the action mindset; a consistent, courageous approach toward challenges which at first seem to exceed our capacities…It is a powerful psychological potential which enables the individual to tap into mental strength beyond their pre-conceived resources. Wielding sisu in the face of adversity helps individuals push through what first seemed like the boundaries of their mental or physical capacities. Furthermore, sisu is an action mindset which equips the individual to choose to take on challenges beyond their observed capacities. It provides the final empowering push when we would otherwise hesitate to act.”
JJ has slept on the couch during his cancer experience because it is easier to care for him when he’s downstairs, and he is a night owl who is often up until the wee hours of the night, so it’s just easier if we don’t have to move pillows, blankets, computer, etc., up and down the stairs every evening and morning. During his intense weeks of cancer, I sleep on the loveseat so I can easily give him his meds during the night and care for him if he feels ill. In previous weeks I slept quite well on the loveseat, but this week I have been struggling to get comfortable. I move from the loveseat, to EJ’s lazyboy chair, back to the loveseat. I am not sleeping well. I wondered if I’ve been drinking coffee too late in the day so it’s keeping me awake? I decided that today I would not drink any in the afternoon. All day today I felt worn and my mind drowsy with sleepiness.
This morning I turned on the faucet in the kitchen, and the water was VERY hot so I turned on the cold also, but it didn’t seem to change the temperature of the water. I thought, “What is going on here?” I turned off the hot water and turned on the cold, and only a trickle of cold water came out. Then the trickle turn into a stream and the stream into the normal gush of water. The water turned very dark, and then it cleared up. I was afraid our pipes had frozen or burst. That would have been bad. But I think the pipes only almost froze. I don’t mind the snow so much this year, but the extreme cold is getting tiresome.
On Wednesday of each week of intense Chemo, the steroids begin to affect JJ and he tends to become irritable and negative. This irritable negativity continues through the rest of the week but dissipates once he’s off Chemo. It’s easier to keep spirits strong when we all can laugh, but negativity can deflate joy and strength. JJ’s irritable negativity seemed worse today than in previous Cycles. He was easily offended and didn’t want to back down from an argument. We can be quite patient when we understand that his irritability is caused by the steroids, but it still takes energy to stand against it and not get sucked into it. Today we were all so tired that it really drained EJ and me.
This morning I paused to get our cups of coffee and my keys to lock the door while EJ and JJ went out the front door to get into the truck. When I went outside, JJ told me that he had slipped and his lower back hit the front porch steps as he fell. He told the nurse about it when we got to the Cancer Center, and she checked his back. She said he will probably have a painful bruise in a day or two. Hopefully there will be no other damage.
We made it to the Cancer Center at 11 a.m. with no further mishaps. We were taken to Infusion Room 3, which we have never been in before. It is smaller than Room 8 but bigger than some rooms we have been in. It has a window, which is nice. We plugged JJ’s Tablet charger into an outlet near his chair, but we couldn’t find an outlet to plug EJ’s laptop power cord into. The laptop helps the long hours pass quicker and we were thinking that this was going to be a VERY long day without it. EJ didn’t give up and he found an outlet near the ceiling that the TV is plugged into. We couldn’t quite reach the outlet unless we stood on a chair. “No,” JJ said when his Dad looked like he was thinking about standing on a chair, “You are NOT going to stand on a chair.” Then EJ moved the movable four-foot cabinet forward a little and we found an outlet behind it. EJ was trying to plug in the laptop when the nurse came in. “You see nothing,” EJ said. She said, “Oh, no, I see nothing.” “We are using Jedi mind tricks on her,” I told EJ, and we all laughed. Except for JJ.
So we got the laptop plugged in, but this week the wireless connection at the hospital has been very, very slow. I used the computer for a little while, but I got a bit frustrated with it and I handed it over to EJ to use while I read the book I brought along.
We were able to leave the Cancer Center at about 4 p.m., which is the earliest we’ve left all week. At first the truck didn’t want to shift out of second gear and we thought we’d have a very loooong slow journey home, but it quickly righted itself and we made it home in good time and in one piece. I helped JJ into the house and he settled on the couch. While EJ changed for work, I took care of the animals, brought in firewood, and threw some wood in the woodstove.
We were all utterly exhausted by the time we got home. This might be a difficult night of up and down if JJ continues to feel ill. This is definitely a week in which sisu is needed. However, we are three-fifths the way through this week. Only two more days to go.