I Love To Go A Gardening
Growing Our Life in Northern Michigan
Chinese Takeout
Yesterday afternoon JJ had a two-hour session of Chemotherapy. The Infusion area was very, very busy and we were tucked into a little room in a corridor that I didn’t know existed. We had a new nurse named Kim. She was sweet.
Sam the therapy dog almost passed us by because we were tucked into the out-of-the-way room, so I went up to his owner, pointed out JJ’s room, and asked if Sam could please visit him. I didn’t want JJ to miss the joy of a visit from such a sweet dog.
The Chemo made JJ very tired, so he slept most of the evening after we got home.
I talked to my friend on the phone later in the afternoon. We weren’t able to talk at all last week so I filled her in on everything, and answered her questions. I told her about the lullaby music that plays over the PA system throughout the hospital whenever a baby is born. I tried to explain to my friend that in the midst of all the sickness, and pain, and suffering, the knowledge that a baby is born always makes me smile. It fills me with such hope and joy and promise. There is life in the midst of suffering and death. Then I heard what I was saying and I paused. “You know what? That sounds just like what the birth of Yeshua (Jesus) did–His birth brought hope and joy and promise and life in the midst of sickness, pain, and suffering. Imagine that.
I went to the post office this morning to buy stamps and pick up a package. JJ felt better this morning so he wanted to go to the post office with me. When we walked in, the Postmaster, who has worked there only a couple of months, said, “You must be JJ!” We chatted a bit and then he reached across the counter, held JJ’s hands, and prayed for him. JJ really liked him a lot. “There’s good people in the world,” he said.
JJ didn’t have Chemo today, but he did have an appointment with his oncologist so once again we drove to the Cancer Center, our home away from home. I assumed the doctor was going to discuss JJ’s progress with us, but I didn’t know exactly what to expect. Was he going to tell us treatment was going well? Badly? That more measures needed to be taken? I was a tiny bit apprehensive because so far every time we met with a doctor,we received worse news than we expected.
When the doctor came into the exam room, the first thing he said was, “We need to do some framing.” We didn’t understand what he meant. What is framing? Was it a new procedure or something? Every day we are learning new cancer-related terms.
But then the doctor showed us JJ’s lab results and we understood. We were stunned. In one week of Chemo, JJ’s Beta HCG Quantitative numbers went from 12,445.2 to 2.2. I didn’t know what this was, so I googled it and found that “Certain types of testicular cancers produce beta-HCG. The hormone is more commonly secreted in non-seminomatous germ cell tumors. Choriocarcinoma, a type of non-seminomatous germ cell tumor, always secretes beta-HCG. Occasionally, seminomas may secrete beta-HCG.” High numbers are bad. Low numbers are good. JJ’s numbers went from high to very low.
We also were shown the lab results measuring the tumor markers in his blood. “Tumor markers are substances that are produced by cancer or by other cells of the body in response to cancer or certain benign (noncancerous) conditions. Most tumor markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions.” JJ’s numbers went from 238.2 to 2.8, a tremendous decrease. It’s amazing.
So you can fully appreciate how drastically his numbers went down, here are charts of his lab results. You can click on the pictures to enlarge them.
It’s amazing. I can see how why the doctor said we should frame these lab results!
The cancer is almost gone. The doctor said that the Chemo will continue so we can make sure that all the cancer is completely, utterly gone. If any cancer remains in his body after his chemo treatment is completed, he will have surgery to remove the lymph nodes in his back to make sure all of it is gone. If there is no indication of cancer, we will be done with treatment.
What tremendous news! All the way home as we drove through the snowy countryside, we rejoiced and discussed that this was surely the result of all the prayers that have been poured out for JJ.
We decided to get Chinese takeout to celebrate. We get Chinese takeout whenever we have anything to celebrate or just need extra comfort. I have our favorite restaurants in my cell phone’s contact list, so I called ahead as we were driving home, and it was ready by the time we arrived to pick it up.
I think all of you, my readers, should participate in our celebration, since you have participated in lovingly supporting and praying for JJ. So go order Chinese food tonight–or whatever food is your favorite.
Kvetching Order
Yesterday was a quiet day, relatively speaking. It was one of the quietest days we’ve had in a long time.
We didn’t have to go anywhere. It snowed all Saturday and Sunday. I’m not sure how many inches of snow we got. I heard that the roads were awful.
I got the day’s firewood brought in and washed, dried, and folded clothes. Our friends in Texas had bought us another gift certificate for Chubby’s Cafe so after shoveling our sidewalks, EJ walked through the snow to pickup the takeout lunch I had called in. The owners told EJ that every day people ask if they have any updates about JJ.
We settled in for a Doctor Who Marathon. Doctor Who doesn’t air in our area, so I had no idea what it was all about, other than little snippets of information I read about here and there. But then we got Netflix, and we could finally watch Doctor Who, and after an episode or two we were totally hooked. I like Science Fiction programs anyway, so it wasn’t all that surprising I’d get hooked. But still.
I like fantasy stories because they are about princes and princesses, and quests and fighting dragons, and the battle between good and evil, which I think is an echo of the “real” story of the true King who went on a quest to save his princess from the dragon. I like Science Fiction stories because they often deal with questions such as who we are, and why we are here, and what does it mean to be human? Science Fiction can be very deep.
I have found that TV often helps distract my mind when I am sick, so I don’t focus on the “not feeling well” so much. So I thought that watching Doctor Who could also help JJ keep his mind off his suffering, as well. Doctor Who is fun, scary, and extremely interesting, and filled with awesome quotable quotes all at the same time. I’ve read thousands of stories and can usually guess endings, but Doctor Who stories are so creative that I can rarely guess where they will end up. Have I told you that we are totally, completely hooked on Who?
JJ didn’t feel well yesterday, but he didn’t feel quite as bad as the door before. “Not quite as bad” is still not good, and he was restless and unsettled. He said he dreads going back for more chemotherapy. I reminded him that he only has a two-hour session on Monday (which is today) and then there will be no chemo for the rest of the week. Later he said that he will endure what he must and it’s ok. He’s an amazing young man, full of courage. I am so proud of him.
Yesterday a Facebook friend who was an oncology nurse and also suffered from cancer wrote to give me some tips in dealing with side effects. Some of the tips we already know about, and the other tips I hope to ask our oncologist about. There are different Chemo drugs and they can be affected by herbs or other medications, so we have to discuss anything we use with our oncologist. One of the tips is:
“All chemos are excreted in bodily fluids; one of my drugs was known to be excreted in tears. So, to protect my eyes, Dr K. had me buy a bottle of artificial tears and carry it with me. I used it whenever my eyes started to sting or feel scratchy, plus always at bedtime and whenever I woke up at night. My eye checkup, after chemo finished, showed that I had no damage to my eyes at all from the chemo.”
I think it’s horrifying that even tears can be toxic. Tears ought not to be toxic! They shouldn’t have to be artificial. They shouldn’t damage eyes. It just seems wrong.
Sometimes I look at my son, and he seems so young and vulnerable, and my heart breaks. It’s very difficult to have a child–even an 18 year-old child–suffer from a severe illness. It’s difficult to see him suffering and not be able to lift it from him. It’s difficult to ease the “not feeling good” when nothing really eases it. It’s difficult to fix meals when nothing tastes good. It’s difficult when he dreads a procedure to tell him that he has to endure it. It’s difficult when he curls up on the couch and asks, “Mom, will you pray for me, that I will feel better?”
There is faith and laughter and hope and love and compassion and closeness and strength mixed through the tears and exhaustion and fears and pain as well. Having the one doesn’t mean the other doesn’t exist. There are co-existing layers.
The couch was too near the woodstove for JJ’s comfort so that he groaned about being too hot. Yet, if we let the fire go out, it gets too chilly in the house. The loveseat was far enough from the fire, but too short to be comfortable. So last night EJ and I switched the location of the couch and loveseat. The arrangement doesn’t look as good as before, but it’s more comfy for JJ, and he can see the birdfeeders better. So it’s all good. Right now, all our focus and energy is spent trying to help JJ.
Sometimes JJ apologizes for “putting you through all this.” I tell him that I know that it’s not easy to have to accept help but everyone goes through times of weakness when they need to be helped and cared for. But those times aren’t forever, and when he gets better, he can help others who are going through difficult times. “Besides,” I say with a touch of humor, “if it makes you feel better, when you get better you can take back all your chores. AND you can take care of your Dad and me when we get old and feeble.”
I think it’s not easy to know what to say or do when family or friends are going through a crisis. I know that a person can feel helpless about how to help and fear saying or doing the wrong thing. We probably all have horror stories about people who said awfully insensitive things–or we shudder at the memories of ourselves saying them. Yesterday a friend shared an article with me that wonderfully explained how to help. I think these sorts of things are wonderful because they give guidelines to give us direction in how to help others. I thought I’d share an excerpt from the article, although it’s well worth reading the whole article if you have time. You can read the entire thing by clicking on the name of the article.
How Not to Say the Wrong Thing
…Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie’s aneurysm, that’s Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie’s aneurysm, that was Katie’s husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan’s patients found it useful to tape it to her refrigerator.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And don’t say, “This is really bringing me down.”
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring…”
Comfort IN, dump OUT.
JJ has chemotherapy this afternoon for two hours. Only two hours, I tell him. Then no chemo for the rest of the week. Tomorrow there is an appointment with the oncologist to discuss how it’s all going.
Small Delights
I think last night was JJ’s roughest night so far. I can tell when he’s not feeling well because he is unable to settle down but paces around the house. Last night even the anti-nausea medicines didn’t seem to help him. At his request, we gathered around and prayed for him, and a short time later he laid down on the couch and fell asleep. However, today he is again not feeling well and is very restless. Poor boy.
I almost feel the most tired today than on all the previous days of the week. Maybe because we have to keep going on the other days, but on this day, when we don’t have to rush around, everything catches up to us and our bodies protest doing anything.
Today is Shabbat, the day of rest, the day we look forward to every week. Usually we try to have all our chores and tasks and shopping done before this day so we can totally relax. We did get as many errands and shopping done yesterday that we could so we wouldn’t have to do them today. However, with JJ sick, there are things that must still be done to care for him and make him comfortable. We have to get done each day what needs to be done because we don’t know what new challenges tomorrow will bring. I think of Yeshua saying that Shabbat was made for man, as a gift, and that it is good to do good on the Shabbat. I think caring for JJ definitely falls into that category.
We have a Winter Weather Advisory in our area, and could get up to 9 inches of snow–although the amounts keep changing. This is the first snow of any significance that we’ve had this winter. It has been falling and falling all day, and it is still falling. I changed my blog’s header to a picture I took this morning. The previous header was from a few years ago.
This morning I walked through the beautiful falling snow to the post office for our mail. Sometimes there are nice little packages or cards for JJ that lift his spirits, so I like to get the mail every day, if possible. It was cold–only 15 degrees Fahrenheit. I could feel the cold making my nasal passages ache. Brrrr.
When I got home, I brought in firewood because we were too tired to do it last night and we were getting low. EJ helped me when he got dressed for the day. He offered to do it all, but I was feeling a bit grumpyish from over-tiredness and I just kept bringing it in.
I got all JJ’s clothes into the washer. His clothes NEED to be done every day. I might wait until tomorrow to wash EJ and my clothes. The new washer and dryer are such a tremendous gift to me during this time. I am thankful every time I do a load of laundry. Just thinking of not having the washer/dryer, of having to run every day to the laundromat to wash JJ’s clothes, makes me feel overwhelmingly exhausted.
I did the dishes. There weren’t many. I swept the floors, cleaned the litter boxes, and took out the garbage. EJ fed the pets.
In between all this is the need to care for JJ. I give him his anti-nausea pills at the proper time throughout the day and night. I have my phone alarm set to alert me when it’s time for a pill. He has to keep up on them or the nausea could overwhelm him. I keep his drinks (water, juice, boost) coming. He needs to keep hydrated. The cups with lids and the wrapped plastic silverware are a tremendous purchase. We don’t have to be concerned about running out and having to wash them, and don’t have to worry about the silly cats sipping from his cups. I feed JJ whenever he asks for food. We were told in Chemo class to not wait for mealtimes, but to feed him whenever he’s hungry.
I asked EJ to call in for a refill of JJ’s anti-nausea medications. I didn’t want us to run out. I checked this morning to see how many pills we had left, and there were only six of each. That’s enough to get us through until Monday morning, but only just, and I hate to be so close to running out because we don’t what could unexpectedly happen. So EJ called the pharmacy and then drove the ten miles to the next town to pick the medications up. I hated to have him drive on such a snowy Shabbat, but he is good at driving in bad weather and he took the four-wheel drive truck that our friends lent us. EJ said the drive was no big deal.
EJ also shoveled the sidewalks before he left.
In the midst of all the busyness and weariness, there are many moments of delights. For example, the falling snow is very beautiful. And this morning we all were able to sit and enjoy several different types of birds visit the bird feeders that I set up a week or so ago. We always whisper a shout, “Oh, oh! There’s a bird at the feeder!” when we see any birds.
And then there are the silly antics of our cats, which always makes us laugh. I thought I’d share some of the pictures I took of them this morning as they birdwatched and stole Luke’s Very Special Cat Food.
On The Fifth Day of Chemo
Last night JJ was talking to a friend through the Internet. They were discussing his cancer. After a bit, JJ called out to me, “What kind of medicine am I on again?” I never can remember the long unpronounceable names of medications. My mind a blank, I grasped for the only word that came to mind: “You are on Oxymoron,” I called back. I was hoping to slip it by him without him noticing that it wasn’t really a name of a medicine. “Oxymoron” means “an expression with contradictory words: a phrase in which two words of contradictory meaning are used together for special effect, such as ‘cruel kindness’ or ‘to make haste slowly.’” However, we all love words and JJ caught me. We laughed uncontrollably as he relayed, “Ha, ha, ha! My Mom says I’m on Oxymoron.”
I provide the comic relief.
Every morning when we arrive at the Cancer Center, JJ is given a blue form to fill out while we sit in the waiting room before we are led back to the Infusion Room. He has to indicate, on a scale of 0 to 9, from good to worse, his level of appetite, nausea, tiredness, well-being, depression, and so on. He had a few 4s on his form this morning.
After a while, Chris came to take us back to the Infusion Rooms. Chris asked, “You doing ok? You look tired today.” JJ said, “I’m doing ok,” but I translated that to “He always says he’s good, but actually he had a rougher night last night.” Chris said, “I can tell…but, hey, buddy, that’s ok, huh? We guys are TOUGH!”
Today we returned to Room 8, the room we had yesterday. It is my favorite room so far. For the first time we had roommates all day–an older woman, her twin sister, and her twin sister’s mother-in-law, who has dementia. They are from a small town not too far from ours. I am glad that our roommates were of compatible personalities since being in the same small room forces people into intimacy. We all chatted back and forth. They were very sympathetic to JJ. His young age brings out extra compassion, it seems to me. And we felt compassion for our “neighbor” who has Stage 3b cancer and is hurting from both Chemo and Radiation.
There are a lot of people in the Infusion Rooms with suffering eyes. All the people in the rooms keep their doors open. I think they, like JJ, like to watch people walk by in the hall so they don’t feel so alone and isolated. We can see them when we walk by to get drinks at the kitchenette or go to the restroom, and I always pray for them.
Today we had a new nurse, Jamie, to assist Janet, one of our regular nurses. Jamie was very sweet and friendly, and she has a cute smile. She told us that she usually works in the area where cancer patients go if they are admitted to the hospital–for dehydration, or an infection, or whatever. She was working in our area today so we will see a familiar face if we are admitted to the hospital at some point. Hopefully, prayerfully, JJ won’t have to ever be admitted.
After JJ was settled in, EJ went to the cafeteria for our breakfast. He always chooses a variety of different foods because we are never sure what will appeal to JJ. Yesterday JJ chose boiled eggs. Today he chose fried potatoes, and he nibbled some crackers. Whatever JJ doesn’t choose to eat, EJ and I eat for our breakfast.
We had wondered all week if it would be possible for EJ to visit his friend in ICU. Tammy was severely beaten by her son earlier this week and was put in an induced coma. While EJ was gone getting food, I asked Jamie if people are allowed to visit ICU patients. She said “Certainly!” She recommended EJ ask at the Information desk in the lobby to find where she’s at because there are three different ICU departments. She said that if Tammy was not allowed visitors, they’d let him know. Otherwise, he should just talk to her because coma patients can hear. When EJ got back with our food, I explained all this to him, and he went looking for her after we ate, but he returned a short time later and said she wasn’t in the hospital any longer. I hope she was just transferred somewhere else. We are concerned about her.
There is a Weather Advisory out for our area starting tonight. We are expecting several inches of snow. So EJ left us to do a little shopping while he could. He got gas in the car and stopped at a Gordon Foods store and bought cups with lids so the cats couldn’t drink JJ’s water or juices and wrapped plastic silverware to use at home.
All week we have anticipated Friday, the end of the week, when JJ could have a couple of days off Chemo. We weren’t the only ones. There was a different feel in the Infusion area today, a feeling of suppressed anticipation. All the cancer patients can enjoy two days without needles and tubes and bags of fluids. The families can stay home. Freedom!
JJ was released at about 2:30 p.m. As soon as we arrived home and got JJ settled, I drove off to run some errands.
First, I drove to the post office for our mail. We live in such a small village that there is no mail delivery within the village limits. There are only post office boxes. When we first moved here, I couldn’t imagine such a thing as no mail delivery, but I quickly grew accustomed to it. It’s rather pleasant to walk the two blocks to the post office and greet the smiling faces of the post office workers, some of whom have watched JJ grow up. We recently got a new Postmaster. He is very friendly and compassionate. He had heard me tell someone that JJ has cancer, and now he always asks about him and says he prays for him. Today as he handed over a package, he said, “Would you mind if I take a moment to pray for your son?” So he reached across the counter and we held hands and he prayed. There are some very special people in this world.
From the post office I drove to the veterinarian’s in the next town to buy another bag of Luke’s Very Special Cat Food that he needs for his urinary tract problems. I suspect Luke could get difficult if the Very Special Food ran out. The other cats love the food too and always try to sneak into the bathroom to eat Luke’s special food, and sometimes they are successful, especially if Luke opens the door himself to get out. Lately we can occasionally hear the swish, swish, swish of Little Bear pawing at the doors of the cabinet where we keep the bag of special food. But only Luke can have this food because it’s too expensive to feed to all the cats.
After the vet, I drove to the grocery store to pick up a few items for JJ, like crackers and popsicles and juices. Then I drove to the Chinese restaurant. JJ loves Chinese food and we told him we’d get him General Tso’s Chicken to celebrate the ending of his first week of Chemo.
At home, EJ helped me unload everything. I dished out some of the Chinese food for our JJ, poured him some lemonade, gave him one of his anti-nausea pills. Then I did a load of his laundry. The new washer and dryer make very musical tones as I push various buttons to get them started, and when they are finished with their loads. Sometimes I truly feel like I’m playing a musical instrument.
Now, at least, it’s time for us all to rest…although I am on call all night, whenever JJ needs me. And EJ is too.
On The Fourth Day of Chemo
Everyday we get up, get dressed, and care for the pets. I put a load of whatever clothing, towels, or blankets JJ has used over the night into the washer. I make sure we have everything we need in our bags to take with us. Then we load our bags and ourselves into the car, stop briefly at the post office for our mail, and drive off to the Cancer Center. At the Cancer Center, we wait in the main waiting room until Chris cheerfully calls us back to the Infusion area. Often a group of us all goes back at once. Chris always checks JJ’s “vitals”–his blood pressure, temperature, and oxygen levels. Then he brings us drinks–EJ and I always request coffee while JJ usually just asks for water, although yesterday Chris talked him into his special hot chocolate. After Chris leaves, the nurse comes in to hook up Jared. Most of the nurses know now that “Mom” has to leave while JJ is being hooked up. If a nurse tries to tell me that it’s ok to stay, both EJ and JJ chorus, “No, she really needs to go…” After JJ is settled, I come back in and, depending on the time of day, EJ goes off to the cafeteria and brings back food for us.
It’s beginning to feel as if we are living the same day over and over, like in the movie Groundhog Day. There are a few minor variations to our day, but the routine is pretty much the same.
Today we had to be at the Cancer Center at 9 a.m. We were put in Infusion Room 8. This is the biggest room yet, and we didn’t feel as if we were sitting in each other’s laps. This is a two-person room, but we were the only ones in it until our last hour there. There was a window, which I always like. because I like to see the outside world.
This morning the PA system called for an adult trauma team to the Emergency Room, and also for a pediatric trauma team for multiple trauma. We suspect they were in an accident. I prayed, and I’m sure EJ did too.
A lady from the American Society stopped by our room at about 10:30 with Christmas treats. She also told us about resources that are available to us for free. There were delicious looking cookies and fudge and chocolates at the kitchenette counter. I took a couple in the hopes of tempting JJ to eat something. He said he didn’t want anything, but I left the cookies within his reach and he nibbled one until it was gone.
At the end of every day, JJ has to decide whether to have the nurse take the needle out of his port or not. If he keeps it in, he can’t take a shower at home and he has to be careful about his sleeping positions. However, it’s easier to hook him up the next morning. If he has it taken out, he can take a shower and it’s easier to sleep but he has to suffer the needle being inserted into the port again the next day, which can be uncomfortable. It’s really quite a terrible decision for him to have to make, with neither choice being entirely pleasant. JJ often asks the nurses what they would suggest, but they say it’s merely a matter of preference and they can’t make the decision for him. The first two days JJ decided to keep the needle in. Yesterday he chose to have it taken out. This morning he took a shower, but then he had to put a cream on the port site to deaden the area so the insertion of the needle wouldn’t be uncomfortable. I asked him later if it was uncomfortable this morning, and he said, “Not really.”
When the nurses ask how he has felt overnight or how he is doing today, he always replies, “I’m good.” I’m becoming more and more a Mama Bear. I translate “good” into the truth because the nurses need to know what he’s feeling so they can help him: “JJ had a rougher night last night. He’s feeling less well and struggles a bit more with nausea. His appetite is minimal…” We have to remind and cajole him to eat. He’s very tired. His smile is rarer. I had to fight back a few tears as I watched him sleep.
JJ continues to thank the nurses each time they care for him.
We left the Cancer Center at about 2:30 p.m. this afternoon. One more day to go before the weekend. There is no Chemo on the weekends.
At home, we did our chores. I baked some homemade potpies that I had made a frozen after Thanksgiving. I also baked some tatertots. JJ ate them all.
We really are doing well through this, facing things as they come, joking when we can, holding on to faith and hope. However, I am determined to describe what each day is like for a cancer patient and his family.
On The Third Day of Chemo
Last night before he fell asleep, JJ told me that he thought he might be starting to lose his hair already. He thought there was a little bald spot near his temple. “You aren’t going to cry about me losing my hair, are you?” he asked. No, I said. I’ll just go around saying, “Shiny!” (A quote from Firefly, a favorite TV series from 2002-2003.) Or I’ll use your bald head to reflect light and signal for help. He replied, “I could be like Captain Picard on Star Trek and say, ‘Make it so!'” “Excellent idea!” I thought I’d order JJ a Star Trek hat and/or T-shirt for when his hair falls out…if it does.
We didn’t have to be at the Cancer Center until 11 a.m., so everyone got to sleep in. My alarm is always set for an hour and a half before we have to leave, although I often get up earlier. Once everyone is up, there is a flurry of busyness to get ready, get the pets fed, make sure we have everything packed that we want to take with us, and so forth. Today we packed EJ’s laptop. His laptop is smaller than mine and more manageable in the small rooms we find ourselves in. EJ and I shared the laptop. Some of this post was written in JJ’s infusion room.
Every day we are in a different room. We were scheduled to be in Infusion Room 10 today, but we were given Room 2. All the rooms are small, but this one seemed particularly small and there was no window. It’s just as well that we were in this room because we weren’t there long before there was a Code Blue at the end of the hall across from Room 10. The hallway was filled with medical staff attending to the patient who, EJ heard, had suffered an allergic reaction to her meds. We were concerned about this patient, and I prayed that she would be ok. Later, a nurse came to our room to tell us that the patient was going to be ok, and that she was moved to another part of the hospital. This incident brings home the life and death seriousness of where we are at.
Periodically during our hospital visits, whether we were waiting as JJ was in surgery or while sitting in the Cancer Center, we’ve heard lullaby music played over the PA systems. We speculated about what it meant. I just realized when I heard it today that–Duh!–lullabies and babies go together so that it probably meant that a baby had just been born at the hospital. I researched it and discovered that I was right. What a wonderful reminder, in the midst of sickness and pain and Code Blues, of the joy of a new life!
Because of his young age, JJ could have been placed with either the pediatric cancer patients or the adults. He was placed with the adults. EJ said he was glad JJ wasn’t in the pediatric department because he couldn’t have endured seeing the little children suffering. JJ is the youngest patient among the adults. All the others that we have seen are middle-aged or older. It’s hard sometimes walking by the Infusion rooms and seeing suffering people inside. I pray for them.
Last night JJ struggled with nausea. The nurse told him today that if it gets any worse, they will give him a different type of anti-nausea medication. Their goal, the nurse said, is for him not to experience any nausea at all.
The meds are making JJ more drowsy, and he is feeling less well. He sleeps most of the time while in his Infusion chair and at home. He is smiling less and struggling with lack of appetite. Sometimes JJ looks so young and vulnerable to me as he lays in his chair with toxic fluids being pumped into him. Still, he is always polite to the nurses and thanks them whenever they care for him.
Here are some pictures I took today:
As the nurse was preparing JJ to go home, she noted that he looked a bit flush and was retaining some fluid so tonight I have to watch carefully for signs of a temperature, itching, trouble breathing, and so forth. If he has those signs, I must call the Cancer Center right away. It’s possible that JJ will not be given chemo tomorrow if his symptoms continue.
On the way home, JJ asked if we could stop at his McDonald’s for a shake. Mostly, I think, he wanted to interact with his co-workers. When we came in, many–even more than yesterday–came up to tell JJ how much they missed him and to ask when he was coming back. The manager gave him a free meal. It really made JJ feel loved.
As soon as we came home, JJ fell asleep on the couch.
On The Second Day of Chemo
When we got home from the Cancer Center yesterday, JJ immediately fell asleep and slept for several hours. After I got a few things done, I lay down too because I didn’t know how interrupted the night would be. JJ has been sleeping on the couch, EJ sleeps in his lazyboy, and I am sleeping on the loveseat so I can be near if JJ needs me–at least until we get used to this new life. It took me a while to fall asleep, and then JJ woke me because he was feeling a little nauseous. He has two anti-nausea medications–one to take every eight hours and the other to take if he still feels nauseous. I gave him the second one, which helped him a lot.
By this time it was almost time for EJ to get home from work, so I figured I might as well stay up. We talked a bit and then it was close to the time JJ needed to take his anti-nausea medication, so I stayed up until 2 a.m. to give it to him. I fell asleep, but JJ woke me a few hours later because he was feeling nauseous so I gave him the second pill. I fell asleep again, and then it was time to get up for the day. We didn’t have to be at Chemo until 10:30 a.m. so the alarm went off at 8 a.m. However, a cat woke me up at 7:30 a.m. by knocking my phone off the table.
Morning was spent getting dressed, doing dishes from the day before, getting a load of clothes in the washer (dance of joy about the new washer/dryer), checking our bags to see if they had everything we wanted to take with us, and taking Danny outside. We had to leave early because I needed to stop at the post office to pick up the mail and buy stamps. It was a very cold morning (6F degrees), so while EJ heated up the car, I called Danny to come inside. He was nowhere to be found. He had escaped out of the back fence that had been crushed when a storm blew a tree on it. I had blocked the opening, but Danny had figured out how to thwart it. We haven’t had time to repair it. With just minutes to spare before we had to leave for the Cancer Center, EJ and I hopped in the car and drove around looking for him. I had a good idea where he would go so I directed EJ there and, sure enough, that’s where he was. He hopped in the car and we took him home, loaded up JJ and our bags, went to the post office, and then we were off.
JJ was put in a two person room this time, but he was the only patient in the room. I waited outside the room while the nurse hooked JJ up. I want the nurses to care for JJ and the other cancer patients rather than have to focus on me because I fainted or got sick. EJ told me that he explained to the nurse that I am very, very brave when it comes to suffering for myself, but I deeply feel the sufferings of others to such an extent that I get faint. I thanked him for describing me as a compassionate hero rather than a wimp. Once JJ was hooked up, I returned to the room.
EJ’s company has been having meetings at various times for open enrollment for their insurance. With JJ being sick, EJ wanted to see if he could sign us up for the better insurance with lower co-pays and deductibles. He could have gone to a 7 a.m. meeting and gotten back home in time to take us to the Cancer Center, but we just couldn’t endure another very early morning and rushing around. Instead, we decided that he would get us settled and then drive back to his company for a 2:15 p.m. meeting. He would get back to the hospital in plenty of time to drive us home.
After JJ got settled in, he said that he was hungry, so I went with EJ to the cafeteria in order to learn the way. I get lost very, very easily, and I needed to be able to find the way to the cafeteria in case JJ needed food while EJ was gone. The way to the cafeteria is so easy that even I will be able to find it by myself. I think. EJ and I loaded up a tray of food for JJ and for ourselves, and returned to JJ’s room.
JJ’s medication made him sleepy today, so he slept most of the five hours we were there. Since EJ had a few hours before his meeting at work, he also fell asleep in his chair. I am envious of my husband’s ability to cat nap anywhere, a skill that I do not have.
EJ returned from his meeting at 3 p.m. We were on our way home by 4 p.m. The McDonald’s where JJ worked is on the way home, and he asked if we could stop in so he could get a shake and say “hi” to his co-workers. So we did. Everyone greeted him very warmly.
Once we get home, there are things we have to get done. Today I put clean sheets and blanket on the couch for JJ and helped him settled him in, while EJ got the fire going in the wood stove. He fixed the gate so Danny couldn’t get out of the front yard and then let him out. I got food warming up for us and started doing more laundry. We made sure the pets were fed. EJ rested a bit, ate supper, and then he left for work.
JJ fell asleep on the couch after his Dad left for work, so I lay down on the loveseat and slept too. I got the best sleep I’ve had in days.
I told EJ today that when people told me that they or they or a loved one had cancer and was going through Chemo, I’d sympathize and ask how they were doing, and usually they’d reply “fine.” But I had no idea what was involved with Chemo or what the patients and families go through. I am amazed at how incredibly ignorant I was.
Our spirits are remaining strong. We are taking one day at a time, doing what has to be done, and trusting God through all this. JJ is doing quite well through this, although the nurse told him that he might start feeling worse at the end of the week.
At work, EJ learned that his co-worker friend was put in an induced coma. Her youngest son beat her up, and when his girlfriend tried to intervene, he beat up her too. EJ did not know how badly the girlfriend was hurt. EJ is distressed by this. I have no words to express my feelings about this. What a tough guy he is to beat up his mother and girlfriend so badly. EJ’s friend is at the hospital that we go to every day. She’s in ICU so we probably can’t get in to see her, but we discussed whether EJ could try to visit her family in the hospital tomorrow just to let them know he cares.
We made it through a second day of Chemo. Tomorrow we don’t have to be at the hospital until 11 a.m.
SOS Prayer
I try not to write more than one post a day, but there is an urgent need for prayer. Today when EJ went into work, he learned that a work friend was severely beaten up. She is in ICU and it is uncertain whether or not she will live.
Her name is Tammy. She needs all the prayers she can get.
Thank you!
On The First Day of Chemo…
My alarm was set for 6:30 a.m. this morning, but I woke before 5 a.m and couldn’t get back to sleep. So I made coffee, got the fire going in the woodstove, let Danny outside (and back in), did a load of laundry in my new washer and dryer (jumping for joy), checked FB, and all that.
I woke my guys up at 6 a.m., we got ready, and off we went to the Cancer Center. We had had some snow, but EJ drives well and it wasn’t a problem. We had to be at the Center at 9 a.m.
We only had to wait a couple minutes before we were taken back to the Infusion Room where JJ would receive his Chemo. Chris, the guy who took us back into the Infusion areas, is very upbeat and likeable.
I was surprised at how tiny the room was. I was expecting something a bit bigger. JJ sat in a comfy recliner. There was barely enough room for another chair–and we had to fit two chairs in for EJ and me. JJ’s nurse, Sue, said that after this they’d try to get us a bigger room.
I was not able to stay in the room while the nurse hooked the tubes up to JJ’s port. Since childhood I have struggled with fainting in doctor’s offices, hospitals, and science classes whenever I heard about, saw, or experienced medical procedures, accidents, or diseases. EJ and I think it’s because my empathy sensitivity is very, very high so I suffer deeply when others suffer. When I was in my mid-20’s I went to a behavioral modification counselor who taught me how to deal with it. Since that time, I have had surgeries, IV’s, blood transfusions, and so forth without a problem. But now this is my son suffering, and so I’m once again struggling with too much empathy as I used to do all those years ago. I stayed out of the room until the port was hooked up, but when I got back into the room, the nurse was explaining what to expect through the day, and I became very hot and clammy and nauseous. I was able–barely–not to faint or vomit, and after going from hot, clammy, and nauseous to cold and shaky, I was finally ok. JJ just looked on with amusement. He doesn’t like all this, but he’s not struggling with it as much as I am. He and EJ have heard me talk about how much I used to struggle with medical stuff when I was young, but they have never seen me like this.
Nurse Sue explained everything she was doing at each step. JJ was given several bags of various things–such as saline solution and anti-nausea medication–one after the other in preparation for the Chemo. It wasn’t until noon that JJ actually started receiving bags of the Chemo. Through the day, he had about three different Chemo medications, as well as more saline and Benadryl and I can’t remember what all else. After awhile the names and information all flow together into one big word. Chemo is so toxic that each time Sue brought in a bag of Chemo, she had to wear a gown to protect her if the bag ripped or anything. Also, each time a bag of Chemo was brought in, JJ had to recite his name and birthday, and Sue read off the information on the bag while another nurse double-checked the forms to make sure he was getting the right meds. It’s pretty serious.
There is a small refreshment area that was located outside JJ’s room today. It had coffee, water, and various juices that we could get whenever we wanted at no charge. The nurse told us it is important that JJ keeps hydrated and eats well. There is also a small fridge so we could bring in food from home, or we could bring in food from the hospital cafeteria or a restaurant or anything. Today EJ brought us food from the cafeteria. We will probably do that during his treatments. I think we will be too tired when we get home each day to worry about fixing meals for the next day. My friend has bought us gift certificates at our local diner. I called ahead and we picked up some food for JJ on the way home from the Cancer Center. The nurse said that some of the meds will make JJ very hungry–and he was hungry today.
Early afternoon EJ left to go to the repair shop to pick up our HHR. He said it drives like a dream now. EJ is our “go-fer” guy since he can find his way through a maze of hallways and roads without getting lost. I tell JJ that I am the comic relief…because I make him laugh. He thinks it’s funny that I keep almost fainting. Plus I tell him silly things that make him laugh. I also kept my guys supplied with refreshments and I ask the nurse questions.
I think the best part of the day was the visit from Sam the therapy dog. All three of us love animals, and we were delighted to meet Sam and give him lovings. At one point, Sam sat down very serious, and his handler said, “Oh, Sam, aren’t you going to smile for them?” And Sam gave the biggest grin ever. We adore Sam.
We left the Cancer Center a little after 4:30 p.m. However, our day isn’t really finished. I have to care for JJ while EJ still has to go to work. We got home about a half hour before he had to leave for work. We are thankful that his company is allowing him to work half days while JJ is on Chemo so he can be with us during treatment. JJ has to take anti-nausea pills every eight hours, so I have set my phone alarm clock to remind me when it’s time for him to take another one. Next one is at 2 a.m.
In some ways the Chemo day is’t as bad as what we’ve experienced the last couple of weeks because we don’t have to rush all over keeping appointments. EJ is able to sleep in the chair a bit. However, it is tiring to be at the hospital all day. Tomorrow we have to be at the Cancer Center for five hours. As far as I can tell, we will have to be at the Cancer Center almost every day for the next four months. The schedule is grueling and we are exhausted. However, our spirits are remaining strong.
The Night Before Chemo…
I combined Saturday and Sunday’s events into this one post.
Saturday
Staying up until the wee hours of the morning was a mistake because EJ and I had to get up at 6:30 a.m. to take the car to the service center at the dealership for repairs. Morning came too early and it was difficult to get moving.
The service guy at the dealership said that it might take an hour before they could begin running diagnostics on our car. We hadn’t had time to eat before we left this morning, and we were starving, so since the service guy had EJ’s cellphone number, we decided to search for provisions. There were stores around the dealership, but none very close. We walked for a bit in the cold 20 degree morning and came first to a Sam’s Club. We don’t have a membership, but we thought maybe we could buy one so we could shop for food…or maybe they had a deli in the store? We were stopped just inside the door and told that the store was open, but only to people buying for businesses. Bummer. At least we got to warm up a little while the “bouncer” talked to us. So we moved on and eventually came to a Target store. They had a deli, but it wasn’t open quite yet. Rats. So we continued on our way and finally came to a restaurant called Steak ‘n Shake. It was open and served breakfast. Yay! We ordered hot coffee and a breakfast of blueberry pancakes and eggs.
After breakfast, we walked the cold half-mile back to the dealership and sat in their lounge. The cushioned chairs were taken, so we sat at a table and drank free coffee. We were exhausted from too many early mornings and long days. I said, “They should have Lazy Boy chairs in this lounge so we could sit back and take a nap…” Then we fantasized, “Too bad there isn’t a mattress store nearby. We could lie on the mattress to test it….for an hour or two.” There was a theater nearby. “If we knew the car repairs was going to be a few hours, we could go to the theater and watch a movie.”
When the service guy came to talk to us, we learned that the car repairs will be more extensive than we thought. Many of the problems were major safety issues. Rather than court death, we approved the work that will cost us almost $1,500. Yikes. We did not need this on top of the washer/dryer and medical bills that are starting to come in. Also, JJ loves his Tablet and takes it everywhere with him, but he is also longing for his laptop to get fixed because his favorite on-line game is complex and needs a very good graphics card to run. The Tablet can’t handle the game and neither can EJ or my laptops. Mostly he has a community of friends at the game that he misses. We told him we will get his laptop fixed if at all possible, but it might not be possible. However, I told him that God knows our needs, including his longing to have his computer fixed so he can connect with his friends, so we must trust Him.
Thankfully, the dealership is loaning us a courtesy car while our car is in the shop so we weren’t stuck at the dealership for 2-3 days. They loaned us a Malibu with only 2,000 miles on it.
On the way home, we drove close to the meat market. EJ suggested we stop in to get Old Fashioned All-Beef Bologna, which enables us to fix delicious quick meals when we are busy or tired. We were delightfully surprised to find tables set up with samples of delicious treats. It looked almost like a holiday office party. I found later on Facebook that today was their annual Taste of the Holidays event. We were able to sample the most delicious roasts, salmon, cheese and crackers, pickles and other things. We also had a taste of a nonalcoholic Glogg, which I learned today is a Scandinavian mulled wine. I never had Glogg before and, oh, my goodness, it tasted like spiced apple rings. EJ bought a bottle of it for us to enjoy at home. Because it was nonaloholic, JJ was able to drink some. (Nothing alcoholic while on chemo.)
When we got home, EJ put the homemade chili I had made yesterday on the woodstove to heat and we took naps.
Later my friend texted me that she and her husband had bought us another gift certificate at Chubby’s for the days when we are too tired to cook. EJ and I walked to the restaurant to pick up the gift certificate and chatted with the owner for quite a while. People are awesome.
Despite everything, this was an awesome day.
Sunday
We are running out of time to get things done. Tomorrow morning chemo begins.
EJ stayed up until 4 a.m. hooking up the new washer and dryer. It is quite computerized. Before we washed clothes, we had to run the washer empty. We tried it this afternoon but we got an error code. EJ read through the manual and figured out what was wrong. Yay! I have been washing clothes at home for the first time in more than a year. When the washer or dryer is finished, it has a pleasant song instead of the scary heart-stopping alarm our old washer/dryer had.
First thing this morning I went grocery shopping. I filled the cart with last-minute things we need and also tempting food for JJ to eat during chemo. There can be no bulk foods, no raw foods, no canned food. Chemo causes a metallic taste in the mouth and canned foods can make the metallic taste worse. Even silverware can increase the metallic taste so JJ might have to use plastic silverware. Everything must be prewrapped.
I got disinfectant wipes and told JJ that I will be sorely disappointment if he doesn’t say “Wipe! Wipe!” at least once like Monk did on the TV show.
When I got home and had put away the groceries, I got to work cleaning the house. I dusted and swept and washed and mopped and disinfected. I’m still not done, but I am mostly done.
We were told that JJ will be sitting in a recliner during chemo, and that there is a TV in the room, and that JJ can bring snacks and items from home. I have been adding to our “chemo bag,” filling it with things to occupy us all for the seven hours we will be at the hospital tomorrow. I packed books, and DVDs, and snacks. I packed JJ’s Prayer Blanket that the local church gave him, and also his Bear Hat. Once I know more of what to expect, I hope I can bring my laptop with me. I don’t want to bring it if I can’t use it. EJ is hoping we have comfy chairs to sit in so he can finally sleep.
I do not know if chemo will make life more hectic and exhausting for us or less.
Backstory
I think there are people who are singers, and their language is song, so they need to sing. There are people who are dancers, and their language is dance, and they need to dance. There are people who are artists, or healers, or givers, and their language is art or healing or giving, and they need to do those things. If they don’t, they wither and die for lack of expression.
I am a person who writes, and my language is writing, and I need to write. If I don’t, the story builds inside me, threatening to explode, until I release it. I release it through blogging.
In storywriting or telling, there is something called a “backstory.” Dictionary.com defines a backstory as a “narrative providing a history or background context, especially for a character or situation in a literary work, film, or dramatic series.” In other words, a backstory is the characters’ personal history which explains why they are as they are and why they act as they do.
I think every person’s life is a story, and every person has a backstory. People have experiences and wounds and struggles that have shaped them and caused them to act as they do. A person who was physically abused as a child might flinch at an angry voice or sudden movement, for example, or a child who grew up in poverty might become a workaholic. Of course, understanding that a person had a difficult past can help us be more compassionate, but that doesn’t give that person the right to be nasty to others. Everyone has wounds and scars that hurt and ache, so we need to be as kind to others as we want others to be toward us. But even if we try to be compassionate, we can’t always know what triggers a reaction in another.
I like what EJ told me that his mother often said as he was growing up: “The bad things that happen to a child is wrong and not his fault. However, once a person becomes an adult, he is accountable for his actions.”
My backstory is that I have family that is very dysfunctional. I would call them emotionally abusive. Such abuse is tricky for even the victim to understand because it is very subtle and the abuser can seem like a very caring person who only wants what is best for his or her victim. Often the victim is very caring and compassionate, and the abuser skillfully uses that against her. With lies, deception, half-truths, shame, guilt, anger…an abuser makes his/her victim doubt herself, robs her of self-confidence, and overwhelms her identity. Like a physical abuser who hits and then sends flowers to apologize but hits again, emotional abusers engage in cycles of “niceness,” guilting and shaming and blaming, anger and unforgiveness, that keeps their victim off-balanced.
A website about brainwashing has an excerpt from the book, In Sheep’s Clothing: Understanding and Dealing with Manipulative People, that explains this sort of abuse very, very well. It is well worth reading and understanding. An example of an emotional abuser can be found in the movie Tangled, where the witch who kidnapped Rapunzel undermines, insults, and controls her while seeming to be a loving mother who only wants what’s best for her daughter. Tangled is not merely a sweet, funny movie. It’s a tale of an emotionally abused girl’s fight to be free. The novel T is for Trespass by Sue Grafton also describes such abuse so accurately that I had trouble reading it and only finished it for closure. I had to know that the abuser was defeated.
I have worked through many things over the years as I became aware of the emotional abuse. I struggled to learn how to set healthy boundaries, how to form my own opinions, how to stop second-guessing myself, how to value myself, and how to forge my own identity. I still find myself struggling with these things at times. Sometimes I find myself reacting and resisting when I feel someone is telling me what to think or feel or when I feel that my freedom to form my own opinions and make my own choices is threatened.
My backstory causes me to question and challenge things I have been told or taught because I’ve experienced people pretending to be something they are not, and distorting and twisting words and events. I greatly value and write about truth and honesty and the freedom to question because I have found Truth to be a knife that cuts through deception, manipulation, and lies. If we know the Truth, the Bible says, it will set us free.
For more than 20 years, I struggled with questions of what it means to repent and forgive, what love really is, and many, many other things too numerous to explain here. And I have grown and been strengthened through it all, and have learned to love my Messiah even deeper. I’m becoming more and more the Me that God designed me to be.
One of the many things I have learned is that we all have strengths and weaknesses, good qualities and bad. We all say or do things that we shouldn’t have, or we don’t say/do things that we should have. Not one person, no matter how good or strong or loving or trustworthy, never fails. Except God, of course. Therefore, acknowledging and repenting of our own wrongdoings and forgiving others for theirs is essential in a relationship. Without a willingness from both sides in a conflict to repent and forgive, a relationship dies, no matter how much one might love the other or want to reconcile with him. Furthermore, if a person refuses to repent or forgive, he cuts himself off from receiving forgiveness because a person cannot receive forgiveness for a wrong that he refuses to acknowledge he committed.
I love and have been helped by a Jewish teaching that says that
1. If I offend a person, I am obligated before God to repent and ask him for forgiveness.
2. If someone offends me, and truly repents and asks me to forgive him, I am obligated before God to forgive him.
3. If someone offends me but is not repentant, I must not forgive him because to do so would allow him to continue in his sin and to continue causing damage. This, of course, does not mean that we hate that person, but rather that we do not allow him into our lives.
This is actually very Biblical. For example, Luke 17:3-4 says:
Watch yourselves! If your brother sins, rebuke him; and if he repents, forgive him. Also, if seven times in one day he sins against you, and seven times he comes to you and says, ‘I repent,’ you are to forgive him.” (Luke 17:3-4)
The repentance, of course, must be genuine, not fake. I think that’s why Joseph tested his brothers in Genesis. If he had found them still filled with murderous hatred, I doubt he would have revealed himself to them. It’s only when he saw genuine repentance and change that he told them who he was.
2 Timothy 3:1-5 says:
Moreover, understand this: in the last days will come trying times. People will be self-loving, money-loving, proud, arrogant, insulting, disobedient to parents, ungrateful, unholy, heartless, unappeasable, slanderous, uncontrolled, brutal, hateful of good, traitorous, headstrong, swollen with conceit, loving pleasure rather than God, as they retain the outer form of religion but deny its power. Stay away from these people!
And there are other such Scriptures. While we are to be compassionate, forgiving, and give people the benefit of the doubt, I do not think that means that we are to allow unrepentant abuse to continue.
A few years ago, after an especially tumultuous year with my family, a year in which I offered love and forgiveness and a willingness to “start over” and it was angrily rejected, I finally recognized that I could not endure the turmoil any more and I had to protect myself, my EJ, and my JJ. I do not hate my family, I truly forgive them, I pray for God to work in their lives in whatever way He knows they need, and I wish them well, but I acknowledge that sometimes relationship is simply not possible. There comes a point when “enough is enough,” the relationship is unfixable, and we have to protect ourselves and our own families from further damage. Even if there isn’t abuse, sometimes relationships die or grow apart and it’s best to accept that and move on.
I have shared a bit of my backstory tonight only because I have a reason to suspect that my family has discovered my blog. I do not share my real name on this blog because my family has searched for and found previous blogs that I wrote in the past. They criticized and became angry at what I wrote, and tried to control what I wrote, so I finally just ended the blog and thought, “It’s no use, I will just not write again.”
But I am a person who writes, and my language is writing, and I need to write. If I don’t, the story builds inside me, threatening to explode, until I release it. I release it through blogging. There is no greater agony than bearing an untold story inside me. So I started this blog. Of all the blogs I have written, I love this one the most because I love the readers here. You are so wonderfully supportive and compassionate and make writing a joy.
It takes intentional effort to find a specific person’s blog. It takes deliberate looking. So in order to find my blog, my family needed to have sought it out. I just don’t understand why they bother. Although my family doesn’t value me, they won’t let me go either. They won’t forgive, but neither will they let me go my separate way. At one time, I really wanted them a part of my life, but that is no longer the case. After more than 20 years of trying to reconcile with them, after 20 years of turmoil, I have accepted that friendship is not possible, and I no longer want them in my life. I feel sad for what could have been, and isn’t, but no longer have any secret yearnings to reconnect. There has been too much turmoil and too much damage. I want my wishes to be left alone to be respected, as I respect their privacy. I do not seek out my family on the Internet, I do not try to find out information about them. I can’t understand why they can’t just move on and enjoy their own lives and let me enjoy mine. I mean, can’t they find anything better to do with their time then to stalk me?
I remember when I was in 6th grade, a bully harassed my friend. Even though I was introspective and quiet, I went up to the bully and said to her that no one likes everyone, and that’s ok. We don’t have to be friends with everyone. However, if we don’t like a person, we don’t have to torment her and make her life miserable either. We could just let her be to live her life in peace and live our life in peace too. I asked the bully to please let my friend live her life without harassment. The bully did just that. She left my friend alone.
I wish everyone would do that.
Ema Dov’s Popcorn
When JJ was first diagnosed with testicular cancer, I talked to a woman from a cancer center in California. She was very caring and gave me some advice, including the fact that I must be our son’s advocate. “You must be a Mama Bear,” she urged. “Ask questions. Insist on answers. Remember, you are fighting for your son’s life.”
I told my friend who studies Hebrew with me that I was told that I must be a Mama Bear, and she nicknamed me דוב אמא (Ema Dov), which is “Mama Bear” in Hebrew. I think it is a very beautiful nickname, and it reminds me that I must be a Mama Bear for my son.
Today I was a Mama Bear. To be honest, I do not know when a person is being a Mama Bear and when she crosses the line into being a jerk, but I growled a bit.
This morning EJ drove JJ to the Big City (but not the Very Big City) for his blood test. I stayed home to make challah bread, and lunch, and clean the house a bit.
After the blood work, they drove to the tire place and got two new front tires. EJ was told that the control arm on the left side of the car was pushing on the tire and shredding it. I don’t really know what a control arm is, but I do understand that the tire was shredded and ruined. The control arm will shred the new tires if we don’t get it fixed as soon as possible. So EJ and I drove to our friend’s and borrowed his truck until the car gets fixed. (EJ and his friend often help each other out.) EJ tried to call the service department at a car dealership before work but he got put on hold for 9 minutes and then shuffled around to various departments. He finally gave up in frustration and disgust and left for work.
This is where my growling began. Because we don’t have much more time to get stuff done. Next week we will be with JJ as he has chemo for hours every day, and then EJ will have to go to work, and we won’t have time for anything else. So I texted EJ with a desperate Mama Bear growl and offered to call dealerships because we need the work done NOW. He told me which dealerships to call. One was in a city in the opposite direction and they couldn’t get us in until Tuesday, which totally wouldn’t work. Finally EJ told me to call the first dealership, which is where he wanted to go anyway. They do good work, they just don’t answer the phone well. In fact, the first time I called, I got disconnected, but I was able to get through the second time and make an appointment to get the car fixed tomorrow at 8:30. It means getting up at 6:30 a.m.–another early morning–but I am so relieved to have the car repaired before chemo starts.
This weekend EJ has to finish hooking up the washer/dryer because I absolutely can’t be running to the laundromat during chemo. I plan to go grocery shopping this weekend, and clean the house really well on Sunday, disinfecting it as well as I can.
After I arranged for the car to get fixed, and had gone to the post office for our mail (JJ’s cases of Boost arrived today), and had brought in firewood, and had washed dishes, I made popcorn. Popcorn is my comfort food. Not microwave popcorn, but real honest-to-goodness popcorn made the old-fashioned way on the stove. I melted cheese in the butter and poured it over the popcorn. Oh, yum. EJ says I make the tastiest popcorn he’s ever had, the best in all the world, and I have to agree. I grew up in a family that loved popcorn, and I was quite young when I became the family popcorn maker. I know how to make popcorn.
My favorite popcorn story is when I visited my brother years ago, when he was in the Army and stationed in Colorado Springs. One evening we craved popcorn but he had run out, so we asked his wife to buy us some on her way to…wherever it was she had to be. However, she said she didn’t have time to stop at the store. We begged her, pleading that this was an absolute Popcorn Emergency and we wouldn’t survive without it. She drove off, and a few minutes later we heard the beep-beep of a car horn. We looked out the window just in time to see her throw the bag of popcorn out the window as she drove past. She didn’t even slow down. The bag of popcorn sailed through the air and landed intact on the grass. We joyfully ran out and retrieved it. I made popcorn. Yum.
Anyway, today I was stressed, and forgetful, and I poured the popcorn in the pan, put the lid on the pan, turned on the burner, and then went into the other room to sit for a moment. I listened for the popping to begin, signalling me to go to the kitchen and begin shaking the pan. After a couple of minutes I didn’t hear popping so I went into the kitchen to check. Smoke was pouring out of the pan. Oh, no! I had forgotten to add the peanut oil. I NEVER do that! The kernels were blackened and melted into the bottom of the pan. I scraped the hot kernels out into a bowl and put the smoking bowl out on the back porch, and then I scrubbed the pan and made more popcorn, this time remembering the peanut oil.
Yum.
After a frustrating day, I no longer feel like growling. I am finally relaxing as I enjoy popcorn, my delicious comfort food.
A Fellowship of Friends
Yesterday evening JJ and I were relaxing at home when the power unexpectedly went out and we were plunged into deep darkness. Since there were no storms or anything, we weren’t prepared for a power outage. I used my cell phone to find a head light but the battery was weak so it was pretty much useless. So I found candles and matches and used the lit candle to locate the battery powered lantern after I texted EJ to find out where it was. It was in the basement. The power returned after about 15 minutes. I found out from a local FB friend that a pole caught fire at school during the afternoon and they were replacing it. Nothing was said about what kind of pole or why it caught on fire.
When the power went out, I was dismayed because I needed an alarm to wake us up at 5 a.m. I usually use my phone alarm, but the battery was low-ish. So I texted several friends and asked them to please pray that the power didn’t stay off! Two friends told me they’d be willing to call me to wake me up. Fortunately, the power came back on. I informed my friends and immediately plugged my cell phone in to recharge it…just in case.
At 5 a.m., my phone alarm went off. Immediately afterwards, I got a text that said,
“Need to get up! Rise and shine! Drive careful.”
My friend lives out of state and would have had to get up at 4 a.m. her time to wake me at 5 a.m. my time. I have the coolest, sweetest friends.
Our local friends are awesome too. One read my blog yesterday about Amazon Prime and wrote:
My dearest TJ, do not forget that your dear neighbor lady works in a grocery store. Anything you need, [Friend-Amazon] can deliver as well. Pm me your order and it shall come to your door, free of charge.
Another out-of-state friend occasionally buys us gift certificates at our favorite local diner. She says that if she lived nearby she’d bring us food, but since she can’t do that, she buys us the gift certificates, especially when she knows that we have had a long tiring day. The people at the diner are tremendously caring toward JJ. It’s kind of awesome that the restaurant owners recognize my friend’s voice now. A benefit of living in a small town, I guess. Wherever I go in our little village–post office, bank, library, restaurant, store–people ask how he is doing.
And there are so very many, many other friends, who show us love in so many ways, through encouragement and prayers, including you who read this blog. No action is too small. All are Hugs from Heaven. You are all so loving that you bring tears to my eyes.
Anyway, this morning we got ourselves up and on the road before sunrise for our final visit to the sperm bank. There is a risk that chemo could make JJ sterile, so it was recommended we go to a sperm bank to help ensure he can have children later. They recommend five trips before chemo begins because each deposit is considered a “try” and not every woman gets pregnant on her first try. So five deposits increase the chances of success. We only had time to fit in four trips.
EJ and I actually love drives because we enjoy beautiful scenery and long talks. However, we do not enjoy long drives in Big Cities. Near the Very Big City, we got caught in another traffic jam, slowing at times to a crawl. I can’t believe that people drive to work in such traffic every morning. This time the drive didn’t stress me as much as the previous time, although it was bad enough. Maybe it’s like the time I visited my sister in California and we spent all day at Disneyland. Toward the end of the day, we were so tired that we went on roller coaster rides just so we could sit down. While everyone else was screaming, we sat like zombies. Maybe I was tired like that and too tired to scream about the rushing traffic.
I really enjoy beautiful or interesting buildings, and the sperm bank is beautiful inside, so I brought my camera with me today and discreetly took pictures. I know, I know, I am nuts, but my FB friends know that I love and collect pictures of interesting buildings which I share in a FB album. I love the green and white colors, and had once thought of painting our living/dining room those colors. However, our rooms are darkish and we need lighter colors to brighten them. You can click on the pictures below to enlarge them.
The staff at the sperm bank are very warm and compassionate. The one who was there today had fought and won a battle with cancer. She had had a port for 18 months and she reassured JJ that in a week he would hardly be aware that he had a port. She said that it’s only about a five minute procedure to take it out and she showed us her scar so we could see how little it was. She also told us that when she was having Chemo, a fellow patient told her about a pain cream that really helped her if her port ached while having chemo. She told us the name and I called JJ’s doctor on the way home. The doctor’s office called in a prescription of it for him.
I am finding that cancer patients/survivors form a sort of fellowship and they help each other out with encouragement and tips. But all my friends both near and far, are helping us through.
On the way home, we discussed that we had heard that Amazon’s CEO had announced that his company is hoping to develop delivery via drone. We discussed the idea, how we thought it would work (or not), and ended up pretty much developing a science fiction story about it between the three of us. We are a family of storytellers.
EJ was so tired that he sort of drifted off to sleep several times as he drove home. As soon as we got home, EJ fell asleep in his Lazyboy chair and JJ fell asleep on the couch. EJ slept until shortly before he had to leave for work, and JJ slept all afternoon. I drove to the post office for our mail and then came home and fixed lunch. I made Thanksgiving Leftover Casserole. I had made it yesterday and they liked it so much that they wanted it again. I put it in the oven and then fell asleep on the loveseat. I actually slept too long so the casserole was in the oven for an hour too long, but it still turned out perfectly.
Tomorrow JJ has to have yet another blood test. He has to have a blood test every week from now on so the doctors can see how his body is handling the chemo. After tomorrow’s blood test is out of the way, EJ will stop to get new tires put on the car. We decided that tomorrow I will stay home so that I can make Challah Bread for Shabbat. We so desperately need a Shabbat rest this week.
We are really tired right now, but our spirits are actually quite strong. We are so very aware of God strengthening us and meeting our needs in so many ways.
Mid-Week Rushing
Yesterday evening I was so tired that I fell asleep on the loveseat. I woke when EJ got home from work, and after chatting with him for a few minutes, I went to bed.
As soon as the sun started to rise this morning, I loaded the baskets of dirty laundry into the car and drove the two blocks to the laundromat. We have been so busy rushing here and there that EJ hasn’t had time to finish hooking up the new washer/dryer and the hamper was overflowing with dirty clothes. I figured that one more trip to the laundromat would be helpful. Usually I only washed the clothes and then brought them home to dry in the dryer. However, when the delivery men brought in the new stackable washer/dryer, they took out the old one, which means today I had to dry the clothes at the laundromat as well as wash them.
I had never really used the laundromat dryers before. I loaded up four dryers: two on top and two beneath. I put four quarters in one of the dryers, then pushed the “hot” and start buttons, and then went to the next dryer and got it going. Then I noticed that the first dryer wasn’t running and the time had reset to nothing. I put in another quarter, thinking I had done something wrong, and then a lady told me that that dryer and the one underneath were broken. So I had to take out the wet clothes and put them into different dryers. I had planned to load up the dryers and then run errands, but with the problem with the broken dryers and my ignorance, the times of the dryers were staggered: some running for 30 mins, some for 20 mins, and some for 10 mins. Don’t ask me how I managed it. I think I put in different numbers of quarters or something. So I had to stay put in the laundromat and feed quarters into dryers whose clothes weren’t yet dry. I felt kinda of stupid, but, oh, well, I’ve never used the dryers before. This will be the very last time I have to go to the laundromat.
Tomorrow we get up at 5 a.m. to drive to the sperm bank in the Very Big City one last time. I’m concerned about the tires, and had so hoped we could have gotten them changed today. But EJ called the tire place and discovered they have to order the tires we need for our car. He made an appointment to get new tires on the car on Friday. We have to be in that city anyway because JJ needs a blood test. It might be hard for him to wait around for tires to be changed, but we are running out of time to get things done. Hopefully it won’t take too long. Soon EJ is going to take the car in to have several problems fixed on it. One of the problems is that the hub is breaking or something–not the hub cap, but the hub. I am not sure what a hub is, but it sounds as if it breaking is a Very Bad Thing and could kill us all. EJ says he when we get the time and the money–very soon–he will take the car in and say, “Fix all the problems.” I’ll just pray that we make it to and from the Very Big City safely and that the car holds up until we can get it fixed.
JJ has felt pain and fatigue from yesterday’s surgery. He is a bit discouraged today–he is getting tired of surgeries, blood tests, and pain. And he’s not looking forward to going to the sperm bank tomorrow. If I had known sooner that he was dreading it, I would have cancelled it, but he didn’t tell me until too late in the day. I’m hoping he will feel better by tomorrow so it won’t be too much of an ordeal for him.
This afternoon I ordered more things from Amazon. Amazon Prime, with its free shipping, has become a lifesaver. I am able to order necessities that we don’t have time to run to the store for. I’ve ordered things like medical masks (so we can keep germs from JJ if we get sick), gloves, and a digital thermometer to use when JJ begins Chemo. We were told during Chemo class that we have to have one to keep track of his temperature if he gets sick. I was thrilled that I also was able to order Boost, a nutritional high protein drink that we’ve been buying to try to fatten JJ up before Chemo. Also, it will be a good drink for him if he gets sick during Chemo and can’t keep food down. He loves the chocolate and drinks several a day. I also found healthy probiotic jello for JJ from a company called Jeannie. I bought a box of 12 assorted flavors, but it arrived with 14 boxes and a nice note from the owner that she was including two extra. I liked her on Facebook and told her I appreciated it!
I’ve also bought things like socks, and toilet cleaner, and the high-efficiency laundry detergent that my new washer/dryer requires at Amazon. Anything I need but I don’t have time to shop for at the store, I am having sent to me. Often I can get the items cheaper on Amazon–and it’s shipped free right to my door! Being able to shop from home is such a blessing. As I said, it’s a life-saver. Plus, I’ve always thought it fun to get packages in the mail, even if it’s only toilet cleaner. 🙂
I also splurged just a bit and bought the bird feeders and the hook thing to hang them on. The hook arrived earlier this week, and that afternoon I dug a hole outside our big living room window and set it up. This morning the bird feeders arrived so I filled them with seed and hung them up. I think the feeders I chose are very pretty and suit the style of our house. I also have window feeders, one on the big window and one on a window that JJ can see as he lies on the couch. Watching the birds will be a spirit-lifter for us all. I can’t wait until the birds start using it. I’ve heard it takes a few days for them to become aware of new feeders.
Port Surgery
We got up at 4:30 a.m. this morning to drive to the hospital. We left a little early because the weather was a “wintry mix” and there was ice on the roads. The roads were a bit slick and EJ drove slower than normal, but we made it to the hospital for JJ’s 7 a.m. check in time without any trouble.
The nurses called JJ back to prep him for surgery. We were supposed to be called as soon as he was ready so we could be with him before they took him away for surgery, but we waited and waited. EJ finally went to ask when we could join our son when we were called back. Supposedly we could have joined him 15 minutes earlier. Talking to the nurse who was attending JJ, we surmised that the soft-spoken elderly volunteer probably informed the wrong family that JJ was ready since the nurse said she had been told that “JJ’s parents and girlfriend” had been notified.
We spent about an hour–maybe more–with JJ before he was wheeled away to surgery. Then we went to the surgical lounge to wait. In the surgical lounge were several electronic status boards on the walls that had patient names, their surgeon and medical staff, and where they were in the process–whether in pre-op, surgery, or recovery–so we could be updated on what was happening to JJ. We were also given a pager so we could be paged when JJ woke up and we could join him.
EJ was so tired that he lay down on a long cushioned bench in the lounge and slept while we waited. I sat next to him and drank coffee and played with JJ’s new Tablet that our friends bought him to keep him company while he is in Chemo. He brought it along with him to play with in the car, and then handed it over for my safe-keeping, telling me I could use it and briefly showing me how.
It wasn’t long before the surgeon came to get us. He told us the surgery went well, and we were led to the recovery room. After a brief wait, we were on our way home. I called ahead for food from the little restaurant in our town and after helping JJ into the house, I went on to pick up the food and after we ate, we all took naps. We were exhausted.
Through the afternoon, JJ has been in some discomfort, but he is mostly doing well.
This morning EJ asked me what is on the schedule for tomorrow. I told him that sleep is on our schedule. We were so looking forward to a day to sleep in. However, our day quickly got filled again: EJ says that with all the traveling we are doing, we need to have good tires and he can get that done tomorrow. He hasn’t yet had time to finish hooking up the washer/dryer (he will get it done before Chemo starts) so I am planning to take the clothes to the laundromat one last time.
I Love To Go A Gardening 