I Love To Go A Gardening
Growing Our Life in Northern Michigan
The Gopher and the Flower
Yesterday was a very bad day for JJ. He was restless and fretful and fought nausea all day. He finally ended up vomiting. A lot of times a person feels better afterwards, but JJ continued to feel nauseous. At bedtime I gave him his third anti-nausea medication. It causes drowsiness so he finally fell asleep and slept all night. Today he felt better, he said, although not GOOD. He was still restless and fretful and somewhat nauseous, just not quite as severe. And some of his eyelashes fell out. We’ve heard from others that the third Cycle of Chemo tends to be rough, and now we have experienced that it is true.
Both EJ and I felt fatigued today and very unmotivated, but there were things we had to do. I fed our “wee beasties”–our dog, cats, and wild birds. I brought in firewood. I cleaned the ashes out of the woodstove. I took out the trash. I folded three baskets of laundered clothes. I did dishes. I swept and mopped the floors. And I cared for JJ. When JJ isn’t feeling well, he doesn’t really know what he wants so he asks for food and then pushes it away, wants ginger ale but then wants water, thinks maybe he should have an anti-nausea pill and “will you cut it in half so I can swallow it?” and “Will you give me a hug?” I have a lot of getting up before I really have time to sit down. But that’s all part of being a caregiver.
We needed a few things from the store–like coffee and disposable coffee cups, eggs, and so on–so EJ left this afternoon to do the shopping for us. He’s very good at grocery shopping, and I was glad that he is so willing to do it. Because he was willing to do the shopping, I refused to let him help me with the other chores. Besides, his back hurts.
Tomorrow we have to be at the Cancer Center at 11 a.m. for a 90 minute session of Chemo. On Friday the nurse informed us that because JJ’s white blood cell count drops during his intense weeks of Chemo, he will also be given an injection to make his bone marrow produce blood cells. The nurse explained to us that there are two different types of injections for this: One makes the bone marrow produce blood cells immediately but it’s not long-lasting. The other takes longer to start producing blood cells, but it is long-lasting. I know that one type makes JJ’s bones ache intensely so that he moans and groans for several days, while the other causes just a slight ache. We think the injection JJ will receive tomorrow is the moan and groan one.
When JJ was small, EJ used to play a drawing game with him. It was a problem-solving, critical-thinking type of game. In the game, EJ drew a picture of a flower and a gopher. One person took the role of the gopher who tried to destroy the flower while the other defended the flower. The “gopher,” for example, might draw rockets falling on the flower, but the “defender” changed the rockets into rain that watered the flower. The “gopher” might draw poison to kill the flower while the defender changed the poison into fertilizer. No matter how the gopher tried to attack the flower, the defender would think of a way to change the attack into something that was harmless or beneficial for the flower.
The Defender is sort of how I see God. I do not believe that God causes things like cancer, and I don’t think He brings difficult things into our lives because He “knows we are strong enough to handle it.” If God gave us difficult things because we are strong, I would be tempted to stay weak so that I wouldn’t have problems. 🙂 The truth is that I know that I am not strong and I cannot handle much of anything. But God is good, and He is loving, and no matter what disease or heartbreak comes into our lives, He is the Defender who weeps with us, helps us, strengthens us, and changes everything into good if we let Him.
Cancer is a destructive, terrible disease, but I believe God loves us and He will change it’s destructiveness in some way so that we become “more than conquerors.”
Why Be Happy?
Yesterday evening JJ felt pretty miserable. Several times he fell asleep on the couch, but then woke a short time later. A few times he had dry heaves. “How long will I feel so bad?” he asked. “How do I get through this?” I told him that we’d manage the best we could, and he WOULD get through this, and he’d probably start feeling better in a day or two.
On the way home from the Cancer Center yesterday, we dropped off JJ’s newest prescription at the Pharmacy. Because JJ was feeling so sick, we didn’t stay to get it filled. Instead, EJ picked it up on his way to work. The nurse had told us that we could give this third anti-nausea medication to JJ at bedtime and it would probably make him sleep all night. She said that I wouldn’t need to wake up in the middle of the night to give JJ his primary med–I could just give it to him went he woke in the morning. So when EJ came home from work, I gave JJ his new med and he did sleep through the night.
Today JJ is still feeling very unwell. 😦
I have been thinking a lot about our roommates yesterday. They made me ponder a lot of interconnected thoughts.
I thought of a portion of Pirkei Avot. Pirkei Avot, which means “Ethics of the Fathers” in Hebrew, is a collection of ancient Jewish ethics and advice. I have studied this book with a group of Messianic Jews and Gentiles like me who love Hebraic teaching. I love Hebraic teaching because it is so practical and there are so many “on the one hand” and “but on the other hand” thoughts. Two opposite things can both be true at the same time, and we have to stay centered between two extremes. There really is a lot of thoughts to think and extremes to live balanced between. I love it. So this post is about different perspectives that were stirred up by our roommates.
One of the bits of wisdom from Pirkei Avot is “judge everyone favorably.” In other words, we don’t always know the whole story so we ought to give others the benefit of the doubt and see them in the best possible light. It could be that our unfriendly roommates had had an awful week, or were in terrible pain, or felt overwhelmed by additional bad news of the woman’s cancer. Who knows?
But Pirkei Avot also teaches “Don’t associate with a bad neighbor.” We are to choose to view people through the best possible perspective. If someone is usually sweet or truthful but appears one day to be nasty or untruthful, we are to give them the benefit of the doubt and consider that maybe they are having a bad day or that the situation is not as it appears. However, if someone consistently lies, is rude, is abusive, etc., we are not to associate with him because that is who he is, a part of his character, and not merely a result of a bad day.
I also pondered that while we all have bad days, or grumpiness, or misery, and we just can’t take any more….our actions do profoundly affect others. On the one hand, I think we must give our roommates the benefit of the doubt and consider that there might be an underlying reason for their unfriendliness that we know nothing about. On the other hand, their unfriendliness caused our own suffering to deepen and made our very difficult week even more difficult. In their desire for privacy, they could have still acknowledged us with a nod or smile that would have conveyed friendliness rather than hostility. We have encountered people who have suffered deeply but still have a kind word for others.
This made me think of a video from Prager University called “Why Be Happy.” It discusses the idea that our negative moods can profoundly affect the people around us and bring them down. While I believe that we can be honest about our lives, and that we all occasionally have bad days, I also believe that we are interconnected and a negative attitude can bring down those around us. We all have a responsibility to do our best not to spread our negative attitudes and increase the suffering of those around us. I like a Jewish saying that says “All Israel is responsible for each other.” This is about Israel, of course, but I do think there is a sense in which people ought not to just live for themselves, they also must live for each other.
These are the thoughts I am thinking today.
All morning the snow has been softly falling. It is very peaceful and beautiful. We are so glad we don’t have to go anywhere. We are enjoying the day of rest.
A Tale of Two Roommates
This has been an exceptionally long week for us. EJ and I have been exhausted. I’m not sure why because it’s not unpleasant sitting with JJ at the Cancer Center. It could be that the constant drives to the Cancer Center, the bad weather, the vehicle problems, and JJ feeling so bad this week is all taking its toll on us.
We got home early enough on Wednesday that EJ was able to rest a bit before he had to leave for work. I got my evening chores done, and then JJ was hungry for Chubby’s food so I called in his order. Usually I go pick up the food, but last night I asked them to deliver because it was dark and cold and we were tired.
JJ fell asleep about 8 p.m. Since he was feeling worse as the week went on and I didn’t know if he’d need me during the night, I threw another log on the fire and lay down to sleep too. I woke when EJ got home from work at 11 p.m. and we talked for a couple of minutes, but then he went upstairs to bed and I fell back to sleep. I woke again when my phone alarm went off at 3:30 a.m.to remind me to give JJ his anti-nausea medicine. I threw more wood on the fire and went back to sleep. I woke Thursday morning at almost 8 a.m. I had had almost 12 hours of sleep! But despite the hours of sleep, I spent Thursday in a fog of fatigue.
When we arrived home, our neighbor called out to EJ as we got out of the truck. They had a pot of very delicious homemade chicken soup for us. Other friends left a bag with a blanket, books, and a Chubby’s Cafe gift certificate. These loving gifts were very appreciated gifts at the end of a long, tiring day.
I was too tired to write last night after we got home. I couldn’t put two thoughts together.
This morning JJ felt very nauseous. He had his primary anti-nausea medication at 3:30 a.m., and his second one about 8:30 a.m., but he still fought nausea all the way to the Cancer Center. As soon as he got settled in his Infusion Chair, JJ told the nurse he was nauseous…and then that he felt he was going to be sick. She got him a dish and he heaved a few times. Then she quickly injected his anti-nausea into his IV. After a bit, it helped enough that he could put aside the dish and fall asleep. However, he continued to struggle with nausea throughout the day. His oncology nurse talked to the doctor’s nurse, who gave him a prescription for a third anti-nausea med. He will take the third one if the first two aren’t sufficient. Poor guy. This is his most difficult week so far.
Most of the time we do not have roommates at the Cancer Center, but when we get a roommate, they are usually there for only a few minutes or a couple of hours. We are always the first in the room and when a roommate is about to come in, the medical staff always closes the curtain dividing the room to give privacy to each family. When the roommates arrive, we try to assess whether they are less talkative or more talkative so we know whether to chat or give them space. Even the least talkative have always acknowledged us with a friendly nod, a smile, and a “hello,” so there is a certain friendliness even if they don’t talk much. We can always tell when the roommates want to chat because there is a warmth and curiosity in their eyes. They tend to ask how old JJ is–and the conversations go from there. Once we begin to converse, we always shove the dividing curtain back and share life stories and encouragement. Friendly people make the day go faster. They become friends and we always greet each other warmly whenever we meet.
Yesterday we had roommates for the last couple hours of our day. The husband had a form of cancer that over the last 18 years has popped up in various lymph nodes in his body. I think it’s called lymphoma. His wife was with him, and she immediately began chatting so we pushed the curtain back to fully interact with them. As we chatted back and forth, we found out that they live in the same area where EJ grew up. The man remembers EJ’s father at work and EJ knew their close friend. We heard about their awesome vacation to Alaska a few years ago. We learned that their son was 39 years old when he died of cancer in 2001, and they raised that son’s child as their own. When the wife teared up at the mention of her son, she and I hugged. As we were all preparing to leave for the day, the woman said to JJ, “I am a hugger. Do you mind if I give you a hug?” and she gave JJ and big, warm grandmothery hug. They were awesome. When people are friendly like this, it feels as if we are all together in this battle, a family of support and encouragement.
Today we had roommates for the whole day who felt unfriendly rather than simply quiet and reserved. They did not acknowledge EJ’s friendly greeting (I was hidden behind the curtain so they couldn’t see me). The only words they spoke to us all day was to insist we hit the call button to summon the nurse as soon as JJ’s machine started beeping as they were settling into the room. The nurses are very quick to respond to beepings, so we always simply wait for them to come rather than “summon” them. Even though the dividing curtain between our areas of the room was closed, the man accompanying his wife tugged the curtain to make sure it was completely closed and he turned his chair away from us. We tried to “judge them favorably” and on the way home speculated, “Maybe they are EXTREMELY private people. Maybe they had an awful week. Maybe they are very tired. Maybe….?” Everyone has a story and it’s difficult to know what theirs was. But it didn’t feel comfortable in the room today, every glance or interaction or word felt like a disruptive intrusion on their privacy, and their unfriendliness felt like a tangible presence that sucked the joy out of the friendly, supportive atmosphere of the Cancer Center and made the day an ordeal. Today’s chemo felt more silent and lonely and the day longer and more stressful than we’ve ever experienced. It was a difficult ending to a difficult week. I really hope we have friendlier roommates in the future.
However, there are bright spots in the day. When the doctor’s nurse stopped by to give JJ his prescription, she pretended to pocket the cookies EJ had bought for us at the cafeteria. I told her that she could have them if she let us leave earlier. She laughed, “That’s not how it works.” Rats. My bribe didn’t work. 🙂
The brightest spot in the day was my conversation with Chris, the awesome Patient Care Tech. His joy counteracted the joylessness of our roommates. At the end of the day, EJ always leaves with our luggage and gets the truck started and warmed while I help JJ get ready to leave. JJ always goes to the restroom before he gets his coat on. While he was in the restroom today, Chris paused in the doorway, “Is JJ ok?” he asked with concern. I explained that this has been a tough week for JJ and he hasn’t felt very well. Chris said that the third cycle of Chemo always seems really hard for people. He said that it’s really hard for him to see JJ feeling poorly because he is so young–he is one of the youngest patients they’ve ever had in the Cancer Center. I said that we are glad that JJ wasn’t in the pediatric ward because it would have been heartbreaking to be among suffering little children. Chris said that’s why he works with adults instead of children. He couldn’t have endured seeing the children suffer. Chris said he really loves his job and he really hates it. He hates that people are ill and that the chemo makes them so sick. However, his own parents died of cancer so he loves to treat patients and their families with as much love and care as if they were his own family. I told him he was awesome at his job. “You are a bright spot in this whole cancer experience. You make it easier to get through this,” I told him. He thanked me, and said that “Nice people like you make my work a joy.” He added honestly, “I do get some cranky patients sometimes.” I am glad we are “nice people” and not cranky or joy-sucking people.
Chris has given JJ the nickname of “Double J.” When he comes into the waiting room to take us back to the Infusion Rooms in the mornings he always says, “Come on back, Double J. How are you doing today, Double J?”
“Double J” felt nauseous and sat with a vomit bag on his lap all the way home. He’s been waiting all week to have Chinese food, and he was determined to get it, so I ordered ahead and we stopped and picked it up on our way home. At home he nibbled it a bit and then shoved it away to save for later. He curled up on the couch and fell asleep.
This weekend we are expecting another snowstorm to hit. I’ve heard we could get more than six inches of additional snow. But my family plans to stay home, with no place to go, and rest.
Sisu
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.
Tire(d)
I had trouble getting to sleep last night. I finally got to sleep, but then my alarm went off at 2:30 a.m. to remind me that it was time to give JJ his anti-nausea meds. After I gave JJ his pill, I added wood to the woodstove and let Danny out and back in. I went back to sleep but then JJ’s cat Luke sat near my head and “raked” my head. I didn’t get much sleep.
I woke at about 7:30 a.m. EJ had set up coffee machine last night so all I had to do was turn it on. I put more wood on in the woodstove. During the night the temps had fallen to -13 degrees. I fed and watered the pets, let Danny in and out, got dressed, made breakfast, made sure our bags were all packed, and so on. Mornings are busy for me. We left for the Cancer Center at 10 a.m. and arrived at the Cancer Center at 11 a.m.
Except for the fact that JJ is having toxic chemicals pumped into his body to kill a deadly disease, being at the Cancer Center is not unpleasant. EJ and I take turns using his laptop, I sometimes chat with my friend on Facebook and other times I sit in my chair with my feet on my bag/footstool and read a book. EJ gets up earlier than normal to take us to the Cancer Center and he still has to go to work after he brings us home, so he often naps while we are there. We have the TV turned to a channel that shows beautiful scenery with soothing classical music. We have all the coffee, tea, juices, water that we could wish for, and the hospital cafeteria is easily accessible. The medical staff is friendly. It’s not that bad.
By the end of the day, though, we are tired, especially if we didn’t sleep well the night before. We were very ready to leave for home tonight when JJ was finally unplugged at about 4:45 p.m. While I waited for JJ to use the bathroom and get his coat and shoes on, EJ took our luggage and went out to start the truck and get it warmed up for us.
When JJ and I finally arrived at the truck, EJ told us the bad news: One of the tires on the truck was low. Very low. He knew there was a gas station just down the street, so he took a chance and drove to it slowly and carefully. Best case scenario was that the tire would need only air. Worse case was that the tire would need to be changed.
When we got to the gas station, EJ saw that the tire was off the rim. It would definitely need more than air. He was going to change it there, but the gas station was extremely busy. I had never seen a busier gas station. EJ didn’t want to risk getting run over by cars zipping in and out of the gas station and it was VERY cold outside (-2 degrees), so he went into the gas station to ask if there was a tire place nearby that could change the tire for us. There was, a few blocks down the street. By this time, it was after 5 p.m. and we weren’t sure if it would be open, but at least it would provide a less busy place to change a tire than the gas station. It wasn’t in a very good part of the city, though.
After more than 5 hours of Chemo, JJ wasn’t feeling well. He also had had steroids today, which made him easily irritated. He was less than cheerful about not being able to go directly home. Later he apologized for his bad attitude.
Fortunately, the tire place was still open and they were willing to get us right in. They invited us to wait in their customer area with couches and chairs. While we waited, EJ called his company and arranged to take the rest of the day off, since he wouldn’t be able to get to work on time. Also, he wasn’t feeling very well. The tire guys were able to put the spare tire on the truck for us in about 15 minutes. They only charged us $10. What a blessing.
We continued on our way home. By this time we were driving home in rush our traffic. Lots of cars were whizzing by. The roads were very slippery and we fish-tailed a couple of times. We saw two accidents along the way. There have been a lot of accidents lately. One of EJ’s co-workers was badly injured in an accident yesterday.
We arrived home a little before 7 p.m. I was so glad to get home in one piece. JJ settled himself on the couch. After dealing with all the problems and slick driving on the way home, after struggling with not feeling well and a sore back, EJ also settled himself in his chair for a well-deserved rest. I took care of the pets, got the fire going again in the woodstove, fed and water the pets, let Danny out and in again, and got JJ something to eat and drink. I started a load of JJ’s clothes so he has jeans to wear tomorrow. I can now relax a bit, although I am on call through the night to give JJ his meds and help him if he feels sick.
It was a long day with an adventure at the end. We are tired, but we survived it, and we are doing well.
Tomorrow morning we leave at 10 a.m. for another day at the Cancer Center.
Day 1 of Cycle 3
Yesterday we spent much of the day cleaning the house and doing chores. After we were finished getting everything done, we sat down and watched a favorite Netflix series with delightfully quirky characters.
This morning we woke up to another six or so inches of snow. I fed the pets, filled the bird feeders with seed, cooked breakfast, etc., while EJ shoveled out the truck and went to the bank. At 8:30 a.m. we left for the Cancer Center. The local news was filled with reports of slippery conditions and accidents. It took us slightly longer than usual to get to the Cancer Center, but EJ got us there safely.
We settled in Room 8, our favorite room because it is the biggest and has the window. Today was JJ’s longest day of Chemo. We were there about 7 hours, from 9:30 to 4:30. We had a roommate (a woman and her father?) for a few hours, but they were reserved so we didn’t chat with them. We did chat with a previous roommate who was in a room down the hall. We always bring EJ’s laptop with us, so I also “chatted” with my friend via Facebook chat. My friend makes me laugh and helps the hours pass.
JJ always gets Bleomycin on Mondays, and whenever he gets Bleomycin he is also given Benadryl and Tylenol. The Benadryl puts him to sleep so he slept through most of his Chemo today.
As soon as EJ got us safely home, he had to get dressed and leave for work. I fed the pets and let Danny out. I glanced outside and saw with amazement that the bird feeders that I had filled this morning were in various stages of emptiness. We are getting more and more visitors at our feeders and they are quickly gobbling up the seed. I don’t mind, though, because I enjoy them so much. Over the weekend I looked for bird identification sites so I could learn the names of some of the bird coming to our feeders. To start with, I wanted to learn the name of a particular type of little brown bird, many of whom our visiting our feeders. They are a little smaller than sparrows. I was amazed to learn that it is a goldfinch. In winter it looks like this:
While in the summer it looks like this:
They look so different that I can hardly believe they are the same bird. I learn something new every day.
After I refilled the bird feeders, I rushed to bring in firewood. There wasn’t much time to get the firewood in before it got dark. I built a fire in the woodstove, but had a lot of trouble getting it going tonight and had to make several attempts. I finally got it roaring and the chill left the house.
While I went around doing my various chores, Luke kept dashing in front of me and leaping on chairs and grabbing my arm whenever I walked close enough. I thought he wanted his Very Special Food so I put a little handful in his bowl in the bathroom. He’d eat a little bit and then open the door and let the other cats eat his special food. Then he’d run in front of me, leap on chairs, and grab me…so I shut him in the bathroom with a small amount of his Very Special Food. After a short time, he opened the door and let the other cats come eat and eat his food. We did this three or four times and then I told him with exasperation, “I am NOT feeding you again!” At last, I finally found out that Luke didn’t want his food, he wanted to be cuddled. Well, duh.
Now that Luke has finally been able to communicate with me, I am sitting with him on the couch and giving him lovings.
Tomorrow–and all this week–we have to be at the Cancer Center at 11 a.m. for five hours of Chemo.
Surviving Chemo Tips
Yesterday I fed the birds TWICE and then I looked out the window and saw that the feeder tray was again empty. So I filled my small repurposed coffee container with seed from the larger repurposed kitty litter buckets in which I keep the bird seed, and I went out to refill the tray for the third time. Once I stepped off the front porch, I was hit by a very strong wind and I realized that the wind was blowing away all the seed. It was no use trying to refill the tray if the wind was going to immediately sweep it all away so I turned around and went back into the house. This morning the wind had died down a little (although it’s still a bit windy) so I went out and refilled the tray…and later I refilled some of the feeders again. We are getting more bird visitors and they are feasting from our feeders.
I keep a bird book nearby so that I can learn to identify the birds coming to our feeders, but I think it’s almost hopeless. I see a bird that I want to identify so I open the bird book and I find many birds that look very much like the bird at my feeder. The differences are so subtle that I find it difficult to figure out which bird is “mine.” I finally find the one that looks most like “my” bird, only to discover that it’s only found in New Mexico. I think I might, maybe, have more success if I find a book that is specific to my state. Even though I fail at bird identification, I enjoy watching the birds visiting the feeder, and I enjoy watching my cats watching the birds.
Yesterday the wind blew and blew. This morning local FB friends reported large snow drifts preventing them from leaving their homes. Local news also reported drifts making roads impassable and several accidents shutting down roads. I am glad that EJ doesn’t have to work this weekend and that we have no place to go today. We are enjoying a quiet morning at home, warmed by our cozy wood stove and cats.
We plan to do nothing today except rest and enjoy. Well, I did make awesome scrambled eggs for breakfast this morning. I fried a few tater tots and added diced bell peppers, onions, and all-beef bologna. We no longer eat pork so the bologna is a good substitute. I also made toast from the Dakota bread we bought at the bakery yesterday. JJ is a night owl and was sleeping during this tasty breakfast so at his request after he woke I made him a bologna and cheese sandwich on Challah Bread. EJ is currently making a yummy chili. Other than that, we are totally not doing anything today. We need this day of complete rest after busy days running to the Cancer Center, or lab, or stores.
As we engage in this battle with cancer, I find there are things that have been very helpful to me. Some things I learned by trial and error and others were ideas that I just thought up. I thought I’d share some of these “surviving Chemo” tips for others who might find them useful:
After discovering that I was too low on anti-nausea pills to make it through the weekend, making frantic calls to find an open pharmacy, and sending hubby out into a snowstorm to pick up the medicine, I learned to get ahead on prescription refills.
We learned this last week that nausea can hit unexpectedly and violently and it’s very unpleasant to arrive at the Cancer Center splattered and smelling of vomit. So we now have an emergency vomit kit in the car. It is filled with a “barf bag,” a change of clothing, paper towels to clean up the mess, and so on.
JJ was given two different anti-nausea pills–a primary med he had to take every eight hours during Chemo without fail and a secondary med for “breakthrough” nausea, meaning he takes it if he still feels nauseous after taking the first pill. I do not have a mind that remembers names of medicines, and I was concerned that I would get the meds mixed up, especially when I had to give JJ his meds in the middle of the night when I was tired and blurry eyed. So I marked the bottle of the primary med with a marker so I could easily identify it at a glance. It’s been very helpful.
The antibiotic my son has to take for infected mouth sores is very big so we learned to cut them into small pieces that are easily swallowed. I put the pieces in a small medicine cup that comes with over-the-counter medicines like NyQuil to keep them together.
Because we have so much to remember and do, it’s easy to lose track of time. So I set my cell phone alarms to remind me of when JJ needs to take his medicines. I can set several different alarms times so it’s very handy. Also, I always keep my phone nearby, so I’m never without my medication alarms.
We found styrofoam cups with lids and straws to be very convenient. Not only did we not have to worry about running out of clean glasses, but there was no danger of the cats drinking from JJ’s cups and getting sick from the Chemo. We bought them from a GFS Marketplace store.
We bought medical gloves suitable for use in handling Chemo from Amazon. I wear them while doing JJ’s laundry or cleaning up vomit. We also bought medical masks in case EJ or I get sick. So far we haven’t had to use the masks so I’m not sure if they are a necessity or not, but I suppose we have them if we need them.
We learned that when a cancer patient loses his hair, his head is very sensitive to pain and cold. A very soft, light hat is comforting. And if the hat is funky, it provides an opportunity to laugh.
I put restaurant menus in my purse so if we are extremely tired after a long day at the Cancer Center, or just want a treat, we can call ahead for takeout at our favorite restaurants and pick up the food on our way home.
I believe that mental health is an essential part of caregiving, so we try to include things in our lives that we enjoy. Obviously, our lives our restricted somewhat by the disease, but we enjoy birds so I bought a bird feeding station and installed it outside our living room window. I also subscribed to Netflix and Amazon Prime because we love watching movies. Our individual laptops have also been a source of connection with friends, and learning, and entertainment during this time. Furthermore, even though cancer is a serious illness, we try to look at our situation with humor because laughter is a powerful medicine.
I have shared our journey with others because I have found that people are a valuable part of this battle. They can be so totally awesome if you let them share your journey. I have found both friend and stranger to be an immense support. We wouldn’t be so strong without them….without you.
Finally, and most importantly, we could not have made it without God. He is the One filling us with hope and strength for each day.
Yesterday I wrote about my friend Cris in my post Bread, Soap, and a Mouse. She makes and sells beautiful handcrafted soaps through her website, A Touch of Eden. This morning in her own blog, she wrote a post titled Battlegrounds of Life. Mentioning JJ (and others with cancer), Cris wrote:
I wanted to do something that would show I care about people in my life. I know that many chemo patients struggle with skin sensitivities. I sent a bar of castile soap to the young man, a gentle soap for someone dealing with sensitivities. What else could I do? I created two bars of soap, pink of course as is the color of the breast cancer ribbons, and named them after my two friends dealing with this type of cancer. I have more plans to continue this trend. They will be limited editions, with the person I am honoring receiving the first bar as a personal gift. Once they have received their gift I will photograph the remaining soaps and put them up on the webpage and Facebook. I will be taking a portion of the sales and setting it aside to be used to help someone who is struggling. Not necessarily via a cancer research project but more on a personal level and most likely sent privately and anonymously.
I think that is an awesome and caring thing to do. I know we deeply appreciate her loving gift of beautiful soap. If you’d like to support her, please make sure to visit her site.
And now, it’s time to go eat EJ’s wonderful chili…
Bread, Soap, and a Mouse
Once again, like we’ve done every day this week, I woke my guys up at 8 a.m. They were a bit resistant to getting out of bed this morning…but resistance was futile. Despite my thankless job, I was able to get them out the door at 9 a.m. and, thanks to EJ’s driving, we actually made it to the Cancer Center about 20 minutes earlier than usual. We weren’t in the waiting room long before the nurse took JJ (with us) to get the injection that will cause his bone marrow to produce more blood cells.
Since this is Friday, JJ had to get his blood drawn. There are about a dozen labs around the city that we can go to. We usually go to one that is a bit closer to us than the hospital. However, we chose today to go to the lab located within the hospital since we were already there. As soon as we walked through the doors of the lab, a technician asked us if JJ was there to get a blood test and when we said he was, she took him back to the blood draw room immediately. She poked him, filled a couple of vials, and we were out the door. We were back at our car by 10 a.m., which is when we had originally planned to arrive at the Cancer Center.
Because every Friday is busy with either trips to the Cancer Center or to the lab, I haven’t had time to make delicious challah bread. My friend told me that when she is too busy to make challah, she stops in at a bakery and buys it. I thought that was a tremendous idea, so last week I searched on-line to see if there was a bakery that made challah bread in the city where the Cancer Center is located. I found one! The Great Harvest Bread Company. I printed off their menu and stuck it in my purse, and we drove to it today since we had so much extra time.
JJ stayed in the car because he is trying to be very careful to avoid public places so he won’t pick up any germs. EJ and I went into the bakery. It was delightful to experience all the bakery smells and colors and tastes. We were offered a generous sample of some of the items. Eric chose to sample a Monster Cookie and I chose a delicious pumpkin roll. Yum, yum, yum. We bought two loaves of challah bread, a loaf of Dakota bread, and two energy bars. Since JJ missed out on the delicious sampling, we bought him a Monster Cookie. We had so much fun that we hope to go back again soon.
At my request, EJ stopped at the post office on the way home so I wouldn’t have to make a separate trip later. I was hoping my new wireless mouse had arrived because my other mouse isn’t working well. My mouse wasn’t at the post office, but JJ got an unexpected package from a very dear friend, whom we have known since JJ was a baby. Cris makes and sells beautiful soaps, and she had sent one of her soaps to JJ along with a note:
This is a very mild Castile soap, made with 100% olive oil and no fragrances. It has been curing for 8 months. I thought it might be helpful for your skin due to Chemo, etc. It will not suds up like most soaps but will clean very nicely.
JJ–and EJ and I–was very touched by this awesome gift. Cris is an awesome person. Not only does she make beautiful soaps, but she and her beautiful dog, Joe Pete, are members of Michigan Search and Rescue. They are the people and dogs who track missing persons, or people buried in rubble, or dead bodies. I love hearing about Cris and her adventures. Anyway, if you’d like to enjoy Cris’s beautiful soaps, visit her website at A Touch of Eden. She also writes a wonderful blog about her soap making that is interesting and informative.
I love the ability to track packages on-line. After we ate lunch, I checked Amazon and saw that my wireless mouse had arrived at the post office so EJ drove me back again. But, bummer, the post office was closed for lunch. We went home again. I really didn’t want to have to struggle with a defective mouse all weekend, and with Chemo starting up again next week, I wasn’t sure when I’d get to the post office again. EJ decided to drive the truck to work because the weather is worsening, so after he left I decided to drive the car to the post office to try to retrieve my package one more time.
Before I left for the post office, I noticed that some of the bird feeders were almost empty. They were all almost full this morning. The birds are really gobbling down all the food today. EJ says birds will often eat a lot just before a storm. I went out and refilled the feeders. Then I drove to the little gas station store for milk, stopped in at the bank, and drove to the post office where–Yay!–I was able to finally pick up my package.
When I got home, I put my package next to my computer and then went to bring in firewood. I wanted to get my outside chores done before the weather got worse. Other than being VERY cold this morning (-4 degrees with a wind chill of -16), the weather was not bad. However, at noon the wind began to pick up and it has worsened through the afternoon. Even in our little village, the wind is whirling the snow around in “snow-nados” and the snow is beginning to drift across the streets. I’m sure it’s much worse in the country. EJ took a heavy sleeping bag with him in case he gets stuck on the way home.
Brrrrrr.
Finally, I got all my chores done, threw another log on the fire, and opened my mouse, which works wonderfully.
Injection & Exam
As we have all week, we woke up this morning at 8 a.m., left home at 9 a.m., and arrived at the Cancer Center at 10 a.m. for JJ’s injection to force his bone marrow to produce blood cells.
On the way to the Cancer Center yesterday, JJ told me that I shouldn’t “tattle” on him, but let him informed the doctor of health issues. I did tell him that I tattled on him last time only when the doctor was gathering his files and getting ready to leave the room and JJ still hadn’t spoke up. Still…JJ told me to let him speak for himself. Ok, so I didn’t say anything yesterday about the sore throat JJ has had for the last couple days, which we have learned means that the mouth sores caused by the Chemo have become infected. And then JJ forgot to mention it to the nurse. I thought that was funny, although the truth is that we are in and out of the injection room so quickly that we all forgot about his sore throat until we were driving home.
So today we all told ourselves to remember to mention the sore throat because we can’t let the infection worsen, especially with his white blood cell count being so low. As soon as we entered the InJection room, JJ remembered to mention his sore throat and the nurse left to informed the doctor. When she returned, she gave JJ his injection, laughing at our banter. We are like a three-person comedy team when we get joking around. When she finished, the nurse led us to an Exam Room because the doctor wanted to check JJ’s mouth. There is a special room for everything at the Cancer Center–Infusion Rooms where Chemo is given, InJections Rooms, Exam Rooms.
We waited for a bit and then the oncologist came in, told JJ to open his mouth and say “Ahhhhh,” peered in JJ’s mouth, and said, yes, he has an infection. He wrote a prescription for JJ and left. We like the oncologist, but we don’t see him as much as the nurses.
JJ was given Augmentin, which is the same antibiotic the doctor gave him the last time his mouth sores got infected. JJ has to take one pill twice a day. He has trouble swallowing them because the pills are HUGE–875 mg. To help him get them down, we cut them into four…five…six pieces…or however many pieces that are small enough for him to swallow.
I took a picture of the pill next to a quarter so you could see how terribly, awfully big they are. I don’t know that it’s humanly possible to swallow such large pills:
JJ wasn’t hungry this morning so he didn’t eat breakfast and he was very hungry when we left the Cancer Center. He asked if he could have Chinese food, so I called ahead and it was ready by the time we reached the restaurant to pick it up. We only ordered a meal for JJ because EJ and I had eaten breakfast and weren’t hungry for lunch yet. Although, I did order an egg roll for myself because I love them. We also stopped at the pharmacy to get JJ’s prescription filled.
When we arrived home, my guys got out of the car and I drove on to the post office for our mail. We didn’t get anything good. When I got home, I made a lunch of leftovers for EJ and me while JJ ate his Chinese food. Then EJ left for work and I did my afternoon chores, bringing in firewood, doing dishes, putting away clothes I had washed a couple of days ago, and so on.
We have Wind Chill Advisory for our state for the next couple of days. The local meteorologist says that there will be “High wind (40 mph) and wind chills nearing minus 30 degrees on Friday. Blowing and drifting snow will also be a problem. Those gusty winds will be strong enough to bring down branches that may have been become weak by the ice storm last December. Blowing snow will reduce visibilities on Friday and Saturday.” I think that the most severe weather will hit Friday evening, hopefully after EJ is home from work. This weekend we will stay snug and warm in our house…unless EJ has to work.
The Etsy Hats
Like yesterday and the day before, I woke my guys up at 8 a.m. so we could leave at 9 a.m. to drive to the Cancer Center for JJ’s injection. JJ struggled to wake up and was slow getting ready. I told him he had time to eat breakfast, but he said he wasn’t hungry yet. So I put Cheerios in a bag so he could munch on them if he got hungry on the drive. JJ reminded me to get him some juice in a styrofoam cup for him to take along, and I remembered to grab the bag of extra clothes I had put together for him last night. We will keep them in the car so he has clothes to change into if he has another episode of vomiting. As we headed out the door, I exclaimed, “Oh, wow, this reminds of when JJ was a toddler and we had to bring along a diaper bag, sippy cup, and bag of Cheerios. I think we are reverting back.” We all laughed.
Our trip to the Cancer Center and back was uneventful. JJ was in a happy mood. We discussed cancer and he said that he sees his cancer as a problem to be managed and to get through and not something that is life-destroying.
On the way home we stopped at the grocery store. Whenever JJ has to have the IV needle inserted into his port, he puts on a special cream an hour before to numb the area. I wanted to make sure we didn’t run out so I had phoned the grocery store pharmacy on Monday, intending to pick up the prescription on Tuesday. However, yesterday JJ needed to get home and cleaned up as soon as possible so we didn’t stop. We stopped today instead. Since we have to keep JJ away from public places because his white blood cell count is so low, EJ stayed in the car with JJ and I went into the store. I also bought a few other things, like juice (which was on sale) and Tylenol, which we were almost out of. We can give JJ Tylenol when his body aches from injections. Fortunately the injections he is receiving this week aren’t as bad as the previous one he had a few weeks ago, so his body doesn’t ache quite so bad.
As soon as we got JJ and the groceries in the house, I drove to the post office to pick up our mail. I was glad to see a package in the mail that I have been eagerly waiting for. It was a surprise gift for JJ from my friend CE.
A few weeks ago, when my friend heard that JJ’s bad head was very sensitive to cold and that he was having trouble finding a hat that didn’t feel heavy and scratchy and painful on his head, she spent several days searching the Internet for the perfect soft and light hat to buy him. It’s easy to find hats for women with cancer, but not so easy to find one for men. My friend finally found a hat made of a soft merino/cashmere blend from a business called “A Walk in the Woods Knits” at Etsy.com. My friend emailed the owner to make sure it was the softest hat she sold, explaining that the hat was a gift for an 18-year-old friend who was battling cancer and who had lost his hair as a result of Chemo. The owner responded that she also had an 18-year-old son, and she hated that such a young man should have to suffer from cancer, so she said she was including a second hat at no charge as a gift. These hats are quite expensive, so I consider it a sacrifice for both my friend and the owner to give such a gift to JJ. I can comprehend that a friend would give JJ such a gift, but it amazes me that someone who had never met him would do so.
When JJ opened the package, I told him the story of the hats. He was impressed with the softness of the hats and with the awesome gift from both our friend and the maker of the hats.
There are many sweet and loving and compassionate people–both friends and strangers.
A Special Time of Love
We do not have a “set in stone” appointment time for JJ’s injections this week, so I woke my guys up around 8 a.m., and we got in the car about 9-ish for the drive to the Cancer Center. We figured that arriving at 10 a.m. was a good time–not too early and not too late.
Our drive was quite eventful. Everything was going well, the sun was shining, the snow beautiful when JJ suddenly started vomiting. He heaved after heave after heave. Poor guy tried to catch it in a blanket we keep in the car, but it went all over the floor, his boots, his hoodie, his jeans, his hands. As soon as he could, EJ pulled into a party store parking lot. I stayed with JJ while EJ went into the store to buy paper towels, garbage bags, and Kleenex. After he stopped vomiting, JJ took off his hoodie. He didn’t want to go into the warm store, he didn’t want to sit in the car, and he couldn’t stay in the sub-zero cold wearing only a T-shirt so I searched and I found an old sweatshirt EJ had left in the car some months earlier. It was dirty and stained, but better than a vomit-soiled hoodie. JJ went over to a snow bank at the edge of the parking lot and used snow to wipe off his hands and clothes. EJ came out with his purchases and he quickly cleaned out the car, throwing out the blanket, the car mats, the hoodie, and the now soiled paper towels while I put them in garbage bags.
JJ felt bad that he had messed up the car–I don’t know if the vomit smell can ever be fully eliminated? But we reassured him that it was absolutely ok. It came without warning and it’s not like he could have prevented it, for goodness’ sake. “And besides,” his Dad reminded him with humor, “We are giving you this car, remember? So it’s YOUR car you vomited in, not ours.”
JJ was feeling better and he still needed the injection to boost his white blood cell count so we continued on our way to the Cancer Center in a car reeking of vomit. What else could we do? JJ handled it all with a good attitude, saying he was willing to continue on and that he’s had worse days. But note to selves: We will now keep a change of clothes, paper towels, and garbage bags in the car for future vomit emergencies.
JJ asked what we were going to do when we got to the Cancer Center. The thought of sitting in a waiting room of people with a dirty sweatshirt and jeans and boots splattered and smelling of vomit was horrifying. I had already been pondering this problem. “This is what we are going to do,” I said. “JJ, you won’t stop in the waiting room. You will go on through the door (the one we walk through every time to get back to the Chemo rooms) to the bathroom on the other side and stay in there. I will go up to the counter in the waiting room and inform the receptionist that you are here, and I will also tell her that you vomited on the drive in, and that you would be in the bathroom, and that it would be extremely helpful if you could get your injection as soon as possible.” And that is what we did, although when EJ and I got back to the bathroom, JJ ended up coming out and waiting in the hall with us for the nurse to take us to the Injection Room.
While we waited in the hallway, we were able to see again the elderly couple whom we had encountered yesterday–the ones who I knew throughout my childhood. Their daughter was with them, and it was good to see her too. We had only time to share what types of cancer our families were dealing with and what our treatments were like before they continued on their way. We also saw the woman we had shared an Infusion Room with a few weeks ago. She is almost finished with her cancer treatment, and we congratulated her and wished her well. She said JJ was an inspiration to her because after she had heard how intense his treatment was and how courageously he endured it, she realized she had nothing to complain about.
The nurse came to get us and JJ got his injection and we drove home in our vomit-mobile. As soon as we got home, JJ took a shower. I went outside and sifted through the garbage bags for JJ’s gloves and favorite hoodie, but threw everything else–floor mats, blanket, and all–away in the trash. No use trying to salvage those. Then I threw the soiled clothes into the washer and got it going.
As we endured the trials of the day, I did a lot of pondering. In many ways this battle with cancer is very difficult: The long hours of chemo, the various surgeries, the unending blood tests, the many doctor appointments and exams, the mouth sores, the hair loss, the vomiting, the weariness, the humiliations of such things as entering the Cancer Center splattered with vomit…Ugh. I wouldn’t wish this awful disease on anyone.
Yet, at the same time there are special moments that a person can only experience at such difficult times as these. It’s easy, as a parent, for example, to get focused on the negatives–on the frustrating battles to get a teen to pick up after himself, speak politely, and “I don’t care how old you are, you still live in this house and you still have to do your chores!” During this time of illness, however, those irritating negatives fall away and we are reminded that he is our beloved son who is facing a tough battle with a strength and courage that we admire. We are reminded that our son is more important than the dirty socks on the floor. We are reminded that we would do anything for him.
It’s easy for a young man to get exasperated with his parents and to feel they are unreasonable and “just don’t understand!” But our son can now see our unceasing and unconditional love for him as we take him to unending medical appointments, sit with him during long hours, care for him, make him laugh to encourage him, sleep on uncomfortable furniture so we can be near if he calls out in the night, and wipe up his vomit.
It’s easy to get battered and cynical in this world when we encounter dysfunctional, selfish people. It’s easy to think no one cares. But all of that is forgotten during this battle of cancer as we become overwhelmed by an outpouring of love from so many people–from both friend and stranger.
And most of all, we are experiencing a deep, deep strength and peace from a God who loves us. HE is why we can keep going with hope. He is why we can laugh. He is.
Photo from: favim.com
Going through a serious illness with a loved one (or any suffering, really) has great benefits. It enlarges our capacity to love and show compassion and mercy. It increases our humility. It teaches us to take one moment at a time and to be more thankful for each blessing, no matter how small. It helps us appreciate each other more and draws us together. So, yes, this is very difficult. Yes, we’d rather not go through it and will be glad when it’s OVER. However, this is also a very special time of love.
Mixed Blessings
We had to be at the Cancer Center this morning at 8:30 a.m. so I got up at 6 a.m. My Chemo week mornings are busy because I have to get dressed, eat breakfast, feed the pets, let Danny out and back in, make coffee, do dishes (if I have time), make sure our bags are all packed, prepare coffee travel cups, wake the guys, fix them breakfast, find misplaced items–not necessarily in that order. (EJ also has his responsibilities, which include making sure the car is warmed up and ready to go, loading the luggage into the car, and driving us to the Cancer Center.)
I woke the guys at 6:30 a.m. It took JJ a long time to get up because he didn’t sleep well and was tired. He asked for Magic Mouthwash for mouth sores so I poured him the prescribed amount in a small medicine cup, but it made him feel nauseous so…he ended not starting to get dressed until 15 minutes before we had to leave. On Chemo mornings he also has to rub a cream on his shoulder where the port is just before we leave because it numbs the area so it’s less unpleasant when the needle is inserted into the port.
JJ was quite grumpy and negative this morning because he dreads Chemo and he has to mentally prepare himself to go. EJ and I also find ourselves more tired at the start of each cycle of Chemo because the schedule is wearying. Sometimes in my head I can hear Scotty (from Star Trek) shouting in his Scottish voice, “She canna take much mor’ of this, Cap’n!” when Captain Kirk orders the Enterprise to go at a high warp speed for too long of a time. Like the starship, we keep going because we must.
We loaded all our gear into the car and took off. JJ’s mood improved as we drove until he was again his cheerful self.
At the Cancer Center, we sat in the waiting room while JJ filled out his daily blue form, indicating on a scale of 1 to 10 how he is feeling: nauseous? tired? anxious? appetite? and so on. I looked across the room and saw an elderly couple who I thought I recognized. From the way the husband was looking at me, I thought he recognized me too. They attended the same church as I did all through my childhood and I dated their son for a bit. They were super nice. I haven’t seen them for probably 25-30 years. It took me a few minutes to work through, “Is it them? Or no? I’m sure it is! Isn’t it?” Then I decided I’d ask them if they were Mr. and Mrs C, but….”Should I go stand in front of them? Or wait to make eye contact?” Then the door open and we all were called back to the infusion rooms, and the man said, “Hi, TJ! How are you?” and we hugged.
I was anticipating chatting with this newly found couple throughout the day, but we were taken to an Injection Room to the right instead of left to the Infusion Rooms. The nurse told us that JJ is not having Chemo this week because his white blood cells are way too low. Instead, he has to come to the Cancer Center every day this week for an injection. The nurse said that she could give us a prescription if we could give the injections ourselves and we all chorused, “NO!” We definitely didn’t want to try to give JJ injections and he definitely didn’t want to receive them from us. “We will come to the Cancer Center for the injection every day, thank you very much.”
It is sort of a mixed blessing: JJ is rather happy that he doesn’t have to spend hours every day this week in his infusion chair. However, the last time he had an injection–only one–he groaned in agony for a couple of days afterwards. The injections make his body ache terribly because they force the bone marrow to produce blood cells. So although we don’t have long Chemo hours this week, it still might be a difficult week.
JJ still has to have his remaining weeks of Chemo, so the Chemo has to be rescheduled. This means that our whole Chemo experience is stretched by an additional week. Also, because JJ’s white blood cells are so very low–almost nonexistent–he can’t fight off any infection, which means we have to be even more careful to protect him from illness. He must avoid contact with people and public places. Yesterday at the grocery store we bought four bottles of an elderberry mixture which is supposed to strengthen the immune system. We can’t give it to JJ, but EJ is taking it to boost his immune system because he is the one who goes out into the world among people more than JJ and I do. He is the one most likely to bring sickness into our home.
Years ago, if there was contagious sickness in a community, people had to have large “Quarantined” signs on their doors if someone in the home was sick, and no one could enter or leave the home so germs wouldn’t be spread. I feel like posting one on our door. Or, as a friend suggested, we could install an airlock/spraydown in our entryway, which is very sci-fi. It would also be more cool–and effective because germs don’t read signs.
After the nurse gave JJ his injection, I showed her a picture of JJ with his funky orange hat that I had taken with my phone. She laughed so hard she practically rolled on the floor. “He looks like a clown,” she gasped. Another nurse heard the laughter and came into the room to see what was up. I’m sure they must not hear that sort of laughter very often at the Cancer Center. I showed her JJ’s picture and she laughed too. I was glad we could spread a little joy. EJ’s co-worker offered to make JJ more hats if he wanted, and on the way home we talked about how much fun it would be to have her make a purple hat or a blue hat….JJ said that the hats actually resembles the feel of hair, so it gives him the sensation that he still has hair, which is comforting. EJ and I said that the hat also looks sort of as if he has hair, so even though it is very orange he looks more like our son than he does with his bald head. So we love the hat.
On the way home, JJ asked if I’d make him an egg burrito so when we got home, I got out the iron fry pan. I diced up and sautéed all-beef bologna, onions, bell peppers and about 7-8 frozen tater tots. The tater tots give the mixture an extra flavor. I beat eggs, poured them into the fry pan, and scrambled everything together. I heated up flour tortillas and scooped the scrambled eggs into the tortillas. EJ and JJ love them (so do I) and say I make the best egg burrito ever. With positive reenforcement like that, I just might keep making them. 🙂
With their bellies full, my guys took naps.
Cycle 3 Preparation
Yesterday we spent the day mostly resting. I say “mostly resting” because I did go to the bank because I had forgotten to get cash earlier. I hate to do business on Saturdays, but we need money for gas and food during this week of Chemo and we won’t be able to get to the bank with our busy Chemo schedule. I had a nice talk with LM at the bank. She asked about JJ and we talked about God giving us strength to deal with all this. She said that she thinks I am a very good writer and that my blog is an encouragement to families battling cancer. That was nice. It was a spirit-lifter to talk with her.
Today was our day to prepare for another week of intense Chemo. We have to get everything done that we need to do because we don’t have much time to run errands during the week of Chemo. So EJ and I went to the grocery store for a few things: We bought the juices JJ enjoys during Chemo, shampoo, pet food, and several other things. We also bought bird seed and a bird feeder. Those weren’t exactly necessities, other than that the birds lift our spirits, but there were major sales today so we got most of our purchases at reduced prices.
Next, we drove to the meat market. After an experience with an unsanitary meat market, we did research and selected this market because they raise their own beef, are very clean, and have won many awards. We bought 20 lbs of ground beef and some all- beef bologna which is very tasty.
After that, we drove to GFS Marketplace for some disposable cups and lids. We have found it’s very handy to use these cups during Chemo so that we can just throw them away rather than worry about washing lots of glasses when we are all tired.
It was very windy today. The wind blew and swirled the snow across the fields and into the roads. It was very beautiful although drifts were beginning to creep across the roads and that could be tricky later. At one point, we saw a squirrel straining to run across the road, but the wind was preventing his progress so that he was pretty much at a standstill. I had never seen such a thing before. We would have hit it except EJ slowed almost to a stop and the squirrel found the motivation and strength to finally overcome the wind and he made it across the road safely.
When we got home, EJ and I brought in the groceries. EJ put the leftover chili on the stove to heat, while I put groceries away. EJ ate and then he went to visit his family. His Mom is living with a sister and her family and he hasn’t seen them for a while. EJ has been so busy driving us places and then going to work that I encouraged him to go if he wanted to and wasn’t too tired. Sometimes it helps for a caregiver to get away. I didn’t go because I had too many preparations I wanted to make, and I didn’t want JJ to be home alone all day.
After EJ left, I poured birdseed into empty kitty litter buckets. I put all our pet food in emptied kitty litter buckets or the cats scratch the bags and tear holes in them. Not good. After I filled the buckets, I filled the new birdfeeder with seed and refilled the others and hung them on the feeder hook outside our large living room window. We are SO enjoying watching the birds. EJ says I have a “bird-feeding ministry.” LOL.
Then, since I had my coat and boots on, I refilled the outside cats’ food and water dish, I brought in the day’s supply of firewood, I took out the trash, and I scooped out the clumps from the litter boxes, which are on our unheated back porch. We have a pet door into the kitchen for them to use to get into the rest of the house.
Then I took off my coat and hat and mittens and boots and went to the kitchen. I divided the ground beef we had bought at the meat market into sandwich bags and put them into a heavier freezer bag and took them to the freezer in the basement. Each sandwich bag provides enough ground beef for a meal.
Then I started a load of laundry. I want to get as caught up on laundry as I can going into Cycle 3.
I made three pizzas–one large and two smaller. I really like this new pizza dough recipe I have found. The pizzas are very yummy. I layered the pizzas with sauce, cheese, hamburger and cut up all-beef bologna, onions, bell peppers, mushrooms, and green and black olives. Then I put more cheese on top. Yum. We all agree it is the best homemade pizza EVER. We demolished the big pizza, but we have the two smaller ones for leftovers tomorrow.
I washed the dishes. Swept the floors. Did more laundry. I probably did a few more things that I can’t remember right now.
I talked to a dear friend on the phone. I also had an utterly enjoyable philosophical, spiritual discussion with another friend. I truly enjoy such discussions with friends in which we discuss and debate topics of faith. With such friends, we are able to explore Scripture, ask questions, and challenge each other without worrying about saying the “wrong” thing. These discussions always feel like feasting to me.
I am tired after my busy day–almost too tired to think–but I think I’m mostly prepared for our very busy week. Tomorrow we have to be at the Cancer Center at 8:30 a.m. EST for a 6 hour day of Chemo.
“Damage My Calm”
Usually EJ gets out of work at 10:30 p.m., but last night he worked until 3:30 a.m. By the time he got to bed it was about 5 a.m. He was exhausted by his long day, but he only was able to get 4 hours of sleep before he had to get up to take JJ (and me) to the lab for his bloodwork. JJ had to get both the weekly and the monthly tests, so they took four vials of blood from him instead of two.
When I tattled to the oncologist about JJ’s most recent health issue, the doctor gave us a simple home remedy to try. He must have had second thoughts because before we left for the lab this morning, we got a call from the office of a specialist who said that our oncologist wanted JJ to set up an appointment with him within 1 to 5 days. Yeah, right, Monday JJ begins his intensive week of Chemo for five hours every day…just when are we supposed to fit in an appointment? When I told the nurse that JJ had Chemo all next week, she asked “Could he make an appointment one afternoon after he is finished with Chemo?” You’ve got to be kidding, right? JJ is expected to endure five hours of Chemo, and then go get examined by another doctor when he’s fighting fatigue and nausea. JJ’s face got panicky and stormy and he whispered to me, “I am NOT making any appointments next week! I am NOT!” In a sweet voice with a Mama Bear growl just under the surface, I told the nurse on the phone, “It is not possible for JJ to schedule an appointment next week…” and the best we could do was make an appointment for the morning of January 20–about two weeks after the oncologist wanted him to go to the specialist. As EJ drove us to the lab, I called our oncologist’s office and left a message with the nurse informing her that JJ couldn’t make an appointment with the specialist in the time frame the doctor wanted. I can understand the oncologist is concerned how JJ’s new health problem will affect him during Chemo, but we have only so much time and energy in a day. We just can’t add another thing to next week. I haven’t heard back from the oncologist nurse yet.
Our family loves well-written movies and TV programs, and we are always quoting from them. During each week of intense Chemo, I have been buying JJ shirts with our favorite movie/TV program quotes on them. I drool over the cool shirts I am buying JJ, and if JJ ever stops wearing them, I am seriously tempted to steal them from him. The last shirt I got for him was from a favorite program from the early 2000 called “Firefly.” As we drove to the lab, JJ said, “I should have worn my ‘You are beginning to Damage My Calm’ shirt because my calm is seriously getting damaged.”
TR, another patient of our oncologist who has the same cancer as JJ, warned JJ that during each cycle of Chemo he will feel worse and take longer to recover. I think that even if JJ doesn’t get physically sicker at each cycle, he is definitely getting more emotionally and psychologically fatigued–more tired having health problems, and more tired of medical procedures, and more tired of medications. Poor guy.
And, of course, EJ and I are tired as well. We are mostly doing well, and our spirits are mostly really good, but we all are definitely aware that this is a marathon we are in, not a sprint.
Yesterday I was tired from no sleep the night before, but I forced myself to make chili for today because I knew that I probably wouldn’t have time to make anything when we got home from the lab. It was nice to be able to just warm up the chili today for lunch.
Shortly afterwards, EJ had to leave for work–after only four hours of sleep. Poor guy.
Our friends bought us another gift certificate for Chubby’s Cafe, so I ordered takeout for supper and then walked down to get it. JJ is never sure what he will be able to eat during his week of Chemo, so he enjoys eating favorite meals on his “off” weeks.
On a lighter note, EJ told me that when his co-worker makes hats, she always chooses the softest type of yarn she can find. And she always runs her hands through the skeins of soft yarn to find the softest of the softest yarn. JJ’s orange hat is extremely soft and comfortable on his head, so he wears the hat constantly during the day. I am getting used to looking over at an adorable bright orange-headed son. I can’t help but compare him to the old Raggedy Andy dolls (I had one as a child–my sister had Raggedy Anne) or a cartoon character in Japanese Anime. I just have to smile.
Tomorrow is Shabbat. We are going to REST tomorrow as we prepare for another busy week of Chemo.
Tattle Tale Mom
Last night EJ brought home a fun hat that one of his work friends had made for JJ. It was bright orange, funky, and very soft so it feels good on his head. It made him look like he had orange hair. JJ loves it.
For some reason I couldn’t sleep last night. I wasn’t anxious or anything, I just couldn’t sleep. I hate when sleepless hour follows sleepless hour. But I functioned ok today.
We drove to the Cancer Center today for JJ’s appointment with his oncologist. JJ has a weekly blood test but apparently we were supposed to also have a monthly test as well. The lab didn’t do it, and we handed over the forms we were given without realizing that one was weekly and one monthly. It’s the monthly tests which checked the cancer markers in JJ’s blood. He will have the weekly and monthly tests done tomorrow, but we didn’t have the results today.
I’m sort of a tattle-tale Mom. If JJ doesn’t tell the medical staff about health issues he is struggling with then I tell them–no matter how minor they seem because do not really know if a minor issue is really a major one. Sometimes JJ is not particularly happy with me after I’ve tattled on him. Today JJ wasn’t going to tell the nurse or doctor about an issue he is having. He just kept saying it wasn’t really a big deal and it was getting better. However, I strongly suspected that he said that only because he didn’t want to be examined. So I tattled on him and the doctor took it seriously and examined him, and now JJ has yet another thing he has to do at home to prevent bacteria from entering a sore. JJ did tell me afterwards that although I sometimes exasperate him when I tattle on him, he does think I am right to do so. Duh. Of course I am right. He should listen to me more often.
The doctor wanted JJ to have a Pulmonary Function Test before he starts his next cycle of Chemo to make sure his lungs are ok because Chemo can affect his lungs and breathing. Pulmonary Function Tests are a group of tests that measure how well the lungs take in and release air and how well they move gases such as oxygen from the atmosphere into the body’s circulation. The doctor scheduled the test for 11:30 a.m. today, which meant we had an hour to wait, so we decided to go to the hospital cafeteria to eat while we waited. We had just entered the cafeteria when I got a call from the department that does the PFTs, and we were told that they could get JJ in immediately. So we went to the patient registration desk instead of the cafeteria.
Only one of us could go with JJ. Since EJ had gone with JJ for is last PFT, I went with him this time. I began to think it was a mistake for me to go when the woman who did the test led us down a hall, on an elevator, down another hall, to the room where the test was done. I am severely directionally challenged, which means I can get lost anywhere, so I was concerned that I wouldn’t be able to find my way back to the lobby. I was concerned even though, after the test, the woman gave me directions on how to get to the lobby. I was very thankful when a hospital employee entering an elevator as we walked past asked us if we were going to the main floor. We said yes, so she invited us to share her elevator, and then she pointed us down the right hall. She was truly an angel.
But back to the test: JJ had to sit in a glass chamber, which I thought looked like something from a science fiction move–like a stasis chamber or something. Adding to the sci-fi look, JJ happened to be wearing his Star Trek shirt today.
In the chamber, JJ had to breathe into a tube several times, sometimes holding his breath for long seconds. The test took about 10 minutes. Then we found our way back to EJ.
All of our shoes are wearing out so last night I did some research on the location of shoe stores in the city and their products. After we left the hospital, EJ drove us to the shoe store I had selected, and we all tried on shoes until we found the ones we liked best. We each got a pair of shoes, and EJ got two pairs because his shoes were part of a “Buy One, Get Second Pair Half Off” sale.
Finally we got home, ate a quickly lunch, and then EJ had to rush off to work. I will do a few chores and then I WANT TO TAKE A NAP! If I can, that is.
I Love To Go A Gardening 