I Love To Go A Gardening
Growing Our Life in Northern Michigan
Vladimir and a Thousand Terrible Things
Yesterday we had to go to the lab for JJ’s weekly blood test.
The drive to the lab was very beautiful. Last weekend’s ice storm was worse just north of us and there is still a lot of ice remaining on the trees there. It looks like a beautiful winter wonderland, although there are a lot of bent and broken trees everywhere. Ice storms do a lot of damage to trees. There are also a lot of people still without power, although the number grows less every day.
Because EJ is on vacation, we didn’t have to rush to leave so early. There are benefits to this, of course–such as not having to get up early and rush around–but also disadvantages. When we get to the lab early, we are usually the only ones in the waiting room. Because we got there later, the waiting room was filled with people. I always look at the people with the understanding that they all have a reason to be there. They all are sick or accompanying loved ones who are sick. Some faces are sad and worn, others less so. I wonder who the people are and what their stories are. I sometimes long to take a picture of all these faces, but I don’t because I don’t want to intrude in their lives. Most of them have enough to bear without having a camera capturing them.
EJ and I always go back with JJ to the room where he gets his blood drawn. We are his support and distraction, chatting with the technician and JJ to keep his mind off what is happening to him. JJ always dreads the Friday blood tests. He hates getting poked.
We mark time in two ways: One is when JJ makes it through an intense week of Chemo Every Day. That week is the hardest. “You’ve made it through another week of Chemo Every Day,” we say. “You are now 1/4 of the way through the difficult weeks of Chemo!” The other is when he makes it through a complete cycle. Each cycle involves one week of Chemo Every Day and two weeks of Chemo only on Mondays with blood tests on Friday. We told JJ on the way home yesterday that he has now officially made it through one complete cycle. Only three more to go.
Monday begins another cycle. It will be JJ’s second intense week of Chemo for five hours every day. We are mentally preparing for the exhausting week ahead. At least EJ doesn’t have to work next week.
JJ said yesterday afternoon that he thought he was beginning to lose his eyelashes. He has struggled with a headache all weekend. He learned that the headache is caused by him losing his hair. Before we left for the lab, we went through all the winter hats we had accumulated over the years to find one that was warm but light and soft because his bald head made him cold but a heavy, scratchy hat made his head hurt. We finally found one that was just right.
I was thinking yesterday that there are a thousand terrible things a person with cancer has to experience and endure, like port surgery, weekly blood tests, getting hooked up to IV’s, being at the Cancer Center for hours and hours. There is having to decide whether to keep the needle inserted in the port all week, which means having to being careful of it all night, or having it removed each day and reinserted in the morning. There is food that doesn’t taste good anymore, more intense smells, nausea, sleepless nights. There are headaches and emotional distress from losing hair, not just on the head, but other places too–even eyelashes. There is increased susceptibility to illness and huge antibiotic pills that we cut in two to make the pieces easier to swallow. There are injections needed because of low white blood cell counts–injections that cause the whole body to ache miserably for a couple of days afterwards. There is having to flush the toilet twice every time it’s used. There is nervous waiting in the doctor’s office to hear what the lab report reveals. Yes, a thousand terrible things.
But there is also love, support, prayers, kindnesses, tears, and laughter, which makes it bearable.
In the afternoon, EJ went to his friend’s place. RB had a load of wood for him. They filled the truck and EJ drove it home. We just have to stack it in our wood shed when we have time. While he was gone, I cleaned the house, did laundry, and made dinner.
Yesterday morning, since we didn’t have to rush, I made Challah bread for Shabbat. Making Challah Bread is a creative joy and it is relaxing. I enjoyed making it again. I haven’t been able to make it since Chemo began because Fridays have become so busy. I had time to let the bread rise and to braid it before we left for the lab. I put the bread near the woodstove to let it rise again while we were gone, but it got too hot and didn’t rise right. It still was beautiful and edible, but not as beautiful or tasty as it usually is. Oh, well. I made Ground Beef Yorkshire for our Shabbat meal. Usually I set the table very nicely with a tablecloth I ordered from Israel and very nice dishes, but we seem to be in a permanent state of tiredness so instead I brought the tzedakhah box, candles, bread, and wine into the living room and we said the blessings there. Then I dished up the food and brought it to my family and we ate while we relaxed in comfy living room chairs and couches. JJ wasn’t hungry, but he had eaten well all day. The Shabbat meal, whether sitting at the table or in the living room, begins a beautiful, peaceful, time of quiet resting.
This morning I woke up after 6 a.m. When I came downstairs, I saw that the kitchen door was closed. The kitchen door is always open, held open by Vladimir. We bought Vladimir at a yard sale years ago, when JJ was younger. We decided to name it because it was cute. JJ asked, “So what should we name him?” I replied, “Let’s not name him a typical raccoon name like ‘Bandit’ or ‘Rocky.’ Let’s name him…..uhm, Vladimir because no one ever thinks to name a raccoon Vladimir.” So Vladimir he became. Vladimir’s cuteness is deceiving because he is actually very vicious and terrorizes us. He lurks near the kitchen door and occasionally attacks us as we walk by. Most people would say we simply stub our toes on him, but we know better. He rushes out and attacks when we least expect it. We then do a dance of pain, crying, “OUCH, OUCH, Vladimir just bit me again!” We should move him–and EJ has threatened to get rid of him–but Vladimir doesn’t bite all the time and he has become a permanent part of our home. What would we do without him to add a bit of excitement (and pain) to our lives? “He’s like Cato in the old Pink Panther movies,” I tell EJ. “He keeps us on our toes by attacking us unexepectedly.” (In the Pink Panther movies, Cato was a servant who was instructed to attack Clouseau unexpectedly to keep Clouseau’s combat skills and vigilance sharp. Cato often took these instructions to the point of ambushing Clouseau in his own house or at times when Clouseau obviously would prefer not to be disturbed.) Vladimir hasn’t attacked any of us in quite some time, but he attacked me yesterday. “OUCH, OUCH, Vladimir just bit me again! Stupid, stupid Vladimir!” I howled as I danced in pain.
Anyway, this morning the kitchen door was closed and the cats were all in the kitchen. I went into the kitchen and saw the broom leaning against the counter in front of the sink, the milk crates holding our gallon jugs of water pulled out into the room (our water isn’t tasty so we buy water to cook with), and a few other things out of place. Obviously, during the night there had been some excitement while I was upstairs sleeping. I studied the scene like a world-famous detective–or maybe like Prince Humperdinck studying the scene of the fight between Inigo Montoya and the Man in Black in The Princess Bride. I deduced that the cats had been after a mouse and that EJ and JJ had tried to help them catch it by exposing the mouse’s hiding places. I verified this with EJ later, and learned that I was correct. I am so skilled at deducing that I should be on NCIS or Castle, I think.
Today is Shabbat, our quiet day of rest. We will rest, relax, be together, study. Shabbat is a quiet oasis in a busy week.
Oh, My Goodness!
Today was spent doing routine chores. EJ brought in firewood, fixed the floor near the washer/dryer, and other tasks. I did dishes, cleaned the house, and reconciled the checkbook–a task I do not enjoy. We walked to the bank together, and then to the post office. The bank tellers and Postmaster all asked about JJ. They are all such sweet people.
JJ’s head is now completely bald, except for a tuft or two of hair. I take pictures to document his cancer journey, but I wasn’t planning to share the pictures of his transformation from hair to bald because I didn’t want to embarrass him. Then he volunteered, “I don’t care if you share pictures, Mom.” Really? I wanted to make sure, “I won’t share if it will embarrass you…are you sure?” And he said “I don’t know. I don’t know that I care one way or another…” That may be, but I will share only a very few pictures, and none that would embarrass him too much:
When JJ first began to lose his hair, I confess that I laughed. “Oh, JJ,” I laughed, “You look like your head has been attacked by moths.”
Then I read the article about how cancer patients tend to feel when they lose they hair–the article that I shared yesterday. I felt I had been terribly insensitive. “I’m so sorry, JJ,” I said repentantly. “I shouldn’t have laughed.” “It’s ok, Mom,” he said. “It’s really ok.”
You’d think that I would be lovingly sensitive from that point on, wouldn’t you? But I wasn’t. I keep laughing. I partially blame JJ for setting up opportunities that make me laugh.
For example, this morning I asked EJ if there is such a product a bald person could buy to polish his head. I wasn’t being funny. I really wanted to know. I thought I had heard that some bald people polish their heads. EJ said there was such a product. Interesting.
Then JJ said, “Why on earth would I want to polish my head???” I said, “Well, if we polished your head so it shone like a mirror, we could signal for help…or maybe, with a few adjustments, we could get more Cable TV channels.”
Oh, my goodness, did I actually say that out loud???
A little later, EJ told JJ that he when he was totally bald, he could look like Mr. Clean. Mr. Clean is a brand name and mascot owned by Procter & Gamble used for a cleaning solution and related products. Mr. Clean was actually based on a real guy who was a body builder, EJ said.
“Mmmoooooommm!” JJ exclaimed, “Dad said I could look like Mr. Clean.”
“Well, looking like Mr. Clean is better than looking like a scruffy nerf-herder,” I replied, referring to Princess Leia insulting Hans Solo in Star Wars.
Oh, my goodness, did I actually say that out loud?
And then JJ said, “Mom, I have no hair!” and into my mind popped a poem my siblings and I used to say as children:
Fuzzy Wuzzy was a bear,
Fuzzy Wuzzy had no hair.
Fuzzy Wuzzy wasn’t really fuzzy, was he?
“Mom! You are AWFUL,” JJ laughed.
Oh, my goodness, did I actually say that out loud?
“Oh, I’m so sorry. I really don’t know what’s come over me.”
And we laughed.
In case you think I’m awfully mean and insensitive, I have to tell you that when something really bothers JJ, I do not laugh. I hug. And I never would say such things to anyone else who was going through this.
But we joke about things. For example, when I had sinus surgery years ago, I had a bandage on the end of my nose. EJ and JJ kept laughing that it made my nose look like a pig nose, so EJ took a marker and drew little pig nostrils on the bandage and then they laughed at me whenever they looked at me. I laughed too.
And when EJ had his wisdom teeth out, the anesthesia made him goofy. JJ had great fun asking his Dad questions on the way home, and laughing at his goofy answers. And we laugh every time we go to the Cancer Center and EJ talks like a yooper at the gate.
That’s what we do. We laugh. Because in difficult situations the choice is either to laugh or cry, and we have decided it’s better to laugh.
but low spirits sap one’s strength.
(Prov. 17:22)
Bad Hair Day
Yesterday was a busy day.
JJ’s laptop was ready to be picked up at the repair shop, so EJ went and got it for him. With JJ vulnerable to illness, I stayed home with him. He suffered terrible body aches from the injection he had had on Friday. I called the Cancer Center to ask the nurse what we could give him to reduce the discomfort.
JJ was overjoyed to get his beloved computer back. He’s been desperate to have his laptop fixed so he can play his favorite games and connect with his friends at online forums. He was also told by TR, a guy the doctor connected him to who is also going through the same kind of cancer, that it is essential that he has a hobby. The repair shop fixed the problems that JJ described, but when JJ turned on his computer, he couldn’t access his programs and even got a “Blue Screen of Death.” He was so frustrated and disheartened. He tinkered with it for several hours, but finally asked God to please help him with the computer, and suddenly his computer was running everything perfectly fine. What a gift!
After EJ brought back JJ’s computer, he went grocery shopping. Christmas eve is a terrible day to go shopping because thousands of other people were doing their last-minute Christmas shopping, but this was really the only day we were able to do it. While EJ was gone, I cleaned the house, brought in firewood, got the mail, made chili, and stuff like that.
Today was a quiet day. About the only thing we did was order Chinese takeout. Today was also a very momentous day because this was the day JJ’s hair fell out.
JJ’s hair started falling out a little bit last night. He’d tug lightly on his hair and several strands came out. Today massive amounts of hair fell out. It came out in chunks, with large sections of baldness. He looked rather comical, in a distressing sort of way. He’s now mostly bald, although not entirely. EJ offered to cut it all off for him, just to get it over with, but I don’t think JJ is ready to rush the baldness.
We knew that chemo causes people to lose their hair, of course, and we were expecting it to happen, but I didn’t know it happened like this. I guess I never really thought much about it. It was just an abstract, “People having chemo lose their hair. They go from hair to baldness. End of story.” I didn’t know it all fell out in about a day or that JJ would look like a mistreated doll with chunks of its hair ripped out.
I read an article tonight about the emotional effects of hair loss on cancer patients. It says that
“Losing hair is a real loss, and patients need to grieve. Losing your hair is a tangible sign that everything is different, and it may trigger deep feelings…Realize that hair loss makes cancer patients feel exposed and vulnerable. For most people, hair loss is a public announcement of the fact that they’ve got cancer. All of a sudden, something that’s very private — a life-threatening illness — becomes public knowledge…Cancer patients often describe losing their hair as feeling like they’re walking around with no skin; they feel raw, exposed, and powerless…Understand that feelings about hair loss are feelings about change. When someone is going through cancer treatment and already feels scared and vulnerable, the threat of losing her hair can seem like the proverbial last straw. With everything else changing in her life, it can be overwhelming to face having her appearance change so dramatically. In fact, hair loss is sometimes a trigger for depression because a cancer patient feels like so much loss is wrapped up in this event. If she loses her eyebrows and eyelashes, it’s even more upsetting because it changes her appearance so drastically. Cancer patients describe looking in the mirror and feeling like they’re staring at a stranger. What could be more disorienting than not recognizing yourself?”
To read more about hair loss and how to help those who are losing their hair, click here.
Ice Storm, Yoopers, and Chemo
This morning we had to be at the Cancer Center at 9 a.m. for a 90 minute chemo session. I was afraid the roads would still be slippery from this weekend’s ice storm, but EJ drove skillfully, as always.
There is a gate at the entrance to the Cancer Center. We have to push a button on a speaker and say that we have an appointment at the Cancer Center and then the security guy raises the gate. JJ and I always laugh because whenever EJ speaks into the speaker at the gate, he suddenly speaks with a strong Yooper accent. “We’re here for da appointment at da Cancer Center, eh?” he says. Sometimes he says, “We’re here for da cancer thing, eh?” JJ always says, “Dad! Don’t say we are here for the cancer ‘thing.’ Say we are here for an appointment!” We go through this routine every time we go to the Cancer Center. LOL.
I probably should explain Yoopers and Yooper accents.
Michigan has two peninsulas–the Upper and the Lower–which are separated by the Mackinac Bridge. (“Mackinac” is pronounced “MackinAW”) The peninsulas are in the shapes of our hands, so we tend to use our hands as maps. Whenever anyone asks where we are from or where a certain city is located, we pull out our hands and point.
People from the Upper Peninsula call those of us in the Lower Peninsula “trolls” because we “live under the bridge,” like in the story The Three Billy Goats Gruff. The Upper Peninsula is called “the U.P.” Not the word “up” as in the opposite of “down” but the initials U and P. People who live in the U.P. are called “Yoopers,” which comes from U.P.ers. Say “UPers” fast and you have “Yoopers.” Yoopers have a distinctive way of talking. For example, they say “Say ya to da U.P. Eh!” or “We’re here for da appointment at da Cancer Center, eh?” You can hear a Yooper accent in the following video, as well as some Yooper humor:
I do not know why EJ has a Yooper accent since he is not from the U.P. It must be his Norwegian ancestry coming through. He said he had to work hard to overcome this accent, but he reverts back when he is stressed. The speaker at the gate stresses him. It always makes JJ and me laugh. I think EJ is adorable when he speaks Yooper.
The major topic of conversation at the Cancer Center today was whether or not a person lost power during the ice storm. The hospital is located in a city about an hour north of us, and they were harder hit. Many of the nurses and patients and families lost their power during the storm and still don’t have it. As we passed side streets, we could see branches and power lines down and streets blocked off with caution tape. Some of the street lights were off.
EJ and I looked at an on-line map showing which areas have no power, and the power outages reach to just about our village limits. We were and are really fortunate to still have our power.
At the Cancer Center we were put in our favorite room, Room 8. Toward the end of JJ’s chemo, we had roommates: A grandfather with his wife and their young grandson–maybe 3 years old. I was surprised that they’d bring such a young child with them. They told the nurse that day care was cancelled because of the weather, and the little boy’s parents asked them to babysit today. I wonder if the young parents had any idea how exhausting chemo could be?
The chemo session went well enough. JJ was given Benadryl along with Bleomycin, which always makes him sleep. He wore his bear hat for the first time for a bit before he fell asleep. He pretended to scowl while I took his picture, but he wasn’t seriously scowling. I think he thinks it’s hilarious too. I bought this hat for JJ because he made a bet with me and lost. He bet I’d faint during chemo class a few weeks ago and I didn’t. This hat is very cool. It has pockets in the paws.
Over the weekend JJ developed a sore throat from mouth sores. He said it felt like strep throat. We were faithful about having him gargle with warm water, salt, and baking soda every few hours all weekend and it did help some. However, the nurses always ask JJ if he has any problems, so I mentioned his mouth sores and sore throat and Kim, today’s nurse, said that she’d have the doctor examine him. The doctor said that he has an infection, so he gave us a prescription for an antibiotic.
We were on our way home when we got a call from the nurse telling us that JJ’s white blood cell count was very low, and JJ needed to return to the Cancer Center so he could have an injection. So back we went. As we waited in the waiting room for a second time, I learned over to JJ and whispered, “Well….we almost escape from the Cancer Center.”
We don’t have to be back again until next Monday. Monday will start another week of chemo every day.
On the way home we stopped for some food because JJ said he was STARVING and couldn’t wait. We also got his prescription filled. While EJ was in the store, I got a call from the computer repair place, which said that JJ’s laptop was fixed and ready to be picked up. Yay! JJ has been impatiently waiting for his computer to be fixed. But Bummer! The repair place is right next to the hospital, and if we had been called an hour before, or maybe less, we could have easily picked it up today. EJ will go pick it up tomorrow. We would have taken JJ so he could get his precious, but it’s best he stays away from people right now. EJ will also do some shopping for us while I stay home with JJ. Fortunately, tonight is EJ’s last night of work, and then he has until after the New Year off.
I thought I had forgotten my camera on the way to the Cancer Center, and was kicking myself because the scenery was so very beautiful. That I should forget my camera on such a day was beyond enduring. But at the Center I discovered it in my purse. Yay! I took pictures on the drive home, and on the way back to the Center, and on the way home again. Here are some pictures I took. They are all from the moving car. You can see trees bent from the weight of the ice, and broken branches, and also the beauty of the ice-coated world. The only thing more beautiful would have been if the sun had shown and turned the world into sparking glass.
Ice Storm
Yesterday our country was hit with terrible storms. The south had bad rain storms and tornadoes. The north was hit by bad snow and ice storms.
Yesterday in our area it rained and as the day darkened into night, the temperatures fell and the rain turned to ice. Freezing rain fell all night long and into this morning. Branches are down everywhere and people are warned to stay off very slippery roads.
I expected us to lose power so I got out the battery-operated lanterns last night. Although thousands of homes in nearby communities lost their power, we did not. It’s possible that we could still lose our power because the lines are coated with ice, and we are expecting snow tonight which will add weight to the ice, but so far, so good.
I do not like the damage ice storms cause, but I do like the beauty of them, especially when the sun shines and makes everything sparkle. I went outside first thing this morning and could hear branches cracking and falling.
Later, EJ and I went for a walk to admire the beauty of our ice-coated town. There were fallen branches everywhere. The sun isn’t shining today, but the world is still beautiful. Midway through our walk, we stopped at Chubby’s Cafe to order lunch. Since JJ wasn’t with us, we ordered takeout and waited while it was prepared.
I, of course, took some pictures.
I love the beauty, but I hope the roads are good tomorrow morning because we have to drive to the Cancer Center for a 90 minute chemo session.
Odds & Ends
Yesterday JJ had to get a blood test, so we drove the hour (or so) to the lab. The blood test didn’t take long. We managed to time it just right so we were the only ones in the waiting room.
Before we left, I had tried to find a computer repair shop so we could get JJ’s laptop fixed. The guy JJ had talked to a couple of days ago who has the same type of cancer as he does (I will call him “TR”) had told JJ that it will be essential to have a hobby during his cancer journey to keep him distracted. So JJ was even more anxious to get the laptop fixed so he can play his favorite game and interact with online friends. I googled “computer repair” and chose one that had good reviews. I called them and explained the problem. The man was very nice but didn’t think he could repair the problem, so he referred us to another place. We looked up the location and took off.
EJ drove us directly where he thought the repair place was, but it wasn’t there. After driving around a bit, and debating whether to stop and ask for directions and where to stop, we finally decided to call my friend in Texas to google the location to us (don’t you just love the Internet?), and then EJ was able to find the place easily. It’s not far from the Cancer Center. The repair guy feels he knows what the problem is and that it can be easily fixed. I hope so. If not, I don’t know what we will do.
JJ was very hungry so as we left the repair shop, we looked for a place to eat. We sort of read out restaurant signs as we drove along. I pointed out, “There’s a Halo Burger…” and EJ shouted “No way!” and made a sharp turn into the parking lot. I had never heard of Halo Burgers before, but EJ remembers the restaurant from his childhood with fondness. Inside the restaurant, there were murals of places in Flint, where the restaurant chain originated. EJ grew up in a small town near Flint, his father worked in Flint, and so did he in his younger days, so he recognized the scenes.
Ugh. We have been eating out more often than we ever have before, because we are so busy going here and there for JJ’s treatment. Yesterday afternoon I walked on the treadmill to counteract the restaurant food. Hopefully, I can get on the treadmill regularly, although I don’t have much hope once we get back into Chemo and JJ starts feeling sick again.
Even though JJ’s lab reports were amazingly good, this battle is far from over. JJ will still have to go through the rest of the Chemo, and will still suffer the effects. This weekend he is struggling with painful mouth sores that he says feels like strep throat. Poor guy. We are having him gargle with a warm water/baking soda/salt water solution the nurses told us about in order to help him. I hope we can get it under control. He could get infections or have to have a feeding tube if the sores get too serious.
Yesterday I learned of two people who are losing their battles with cancer. I do not personally know one of them, but she is dear to my friend, so it saddens me. The other is the wife of the pastor of the church we attended about ten years ago. This was a wonderful couple. My favorite pastor/wife of all the churches I’ve attended over the years. So many people are suffering from so much lately. These two woman who are losing their battles with cancer reminded me of the seriousness of the battle we are in. Not everyone wins it.
This weekend we are facing the very real threat of an ice storm. The weather reports say that we could get an accumulation of around a half-inch of ice by tomorrow morning, making travel dangerous. Power outages are expected, some possibly widespread. Fortunately EJ doesn’t have to work this weekend so he can stay home. He knows how to skillfully drive in all sorts of weather conditions, but I still worry about him driving to and from work when the weather is bad. If there are power outages, our wood stove will keep us toasty warm. However, I’m praying that the power doesn’t go out because it makes everything more difficult and the hours feel long without the computer or TV, especially if JJ doesn’t feel well. I’m charging my phone just in case we lose power. I’m also praying that we don’t have any problems getting JJ to his next Chemo session on Monday morning.
Further Ahead
Today I felt very lazy. We all spent the morning just sort of taking it easy, which, after the busy weeks we’ve had, was a joy.
While we were talking to the doctor the other day, he told us that there is another young man–in his late 20s–who has the exact same cancer as JJ. He’s a little further ahead on the journey, and he wanted to talk to JJ about what to expect, so he ask the doctor to give JJ his phone number. The doctor said he was an extremely nice man.
Today JJ called the guy and talked to him for quite some time. JJ had been nervous about calling a stranger, but after they ended their conversation, JJ told me that he was glad he called because the man really was nice. The man said that after his first cycle of chemo, his count went down to 2,000. The fact that JJ’s was 2 is utterly amazing.
However, the man also warned him that each cycle of chemo he will feel worse than the time before and that recovery will take longer after each cycle.
So we aren’t out of the woods yet, there’s more to endure, so please keep praying.
Don’t Blink
Today was a very relaxing day of no Chemo or doctor appointments.
JJ felt quite well this morning, so he went with me to the bank and post office. A friend who works at the bank gave JJ a hug, and the postmaster greeted JJ warmly.
JJ has wanted oversized shirts because they feel more roomy and comfortable when he is hooked up to the IVs. He has been borrowing some of his Dad’s shirts, but I thought it would be fun to get him interesting shirts. I thought I’d try to get him a different shirt for each week of Chemo. His first two shirts arrived today, but I only gave him one:
This is a Doctor Who reference. The “Don’t Blink” episode has forever changed how I view statues of angels. Who knew statues could be so scary? I am somewhat envious of JJ’s cool shirt so I told him “Don’t Blink or I just might steal your shirt.” 🙂
Here is a picture of JJ with his cat, Luke. Luke loves to follow JJ around and cuddle with him. Luke is a genius cat who taught himself to use the toilet. You can read about him here: JJ’s Cat.
This afternoon two of EJ’s sisters came to visit. They prepared yummy food for us. We enjoyed their visit. They got stuck in our slippery driveway, but two of our wonderful neighbors helped them get unstuck.
That was pretty much my day today. It was nice to have such a day.
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.
I Love To Go A Gardening 