Comforts of Home…Almost

We didn’t have to leave for the Cancer Center until 10:30 a.m. so we had time to get a few things done this morning. EJ went outside and shoveled the walks and driveway. A Good Samaritan plowed out most of our parking areas yesterday. We have a driveway that is one vehicle long and several cars wide and also we (and guests) often park alongside the stone wall in front of our house. But EJ made sure there was so snow beside or behind the car so it didn’t get stuck in the driveway. 

EJ estimates that we now have about a foot of snow on the ground. Today we woke up to -16 degree temperatures. It is so cold that the snow squeaks when we walk on it. However, our woodstove keeps us so toasty warm that we aren’t even aware of the cold temperatures until we go outside. I’ve heard that January is going to be a very cold month for us, and the temps might dip even lower. We also are supposed to get more snow this weekend. The forecasts keep changing so we are not sure if we will get a few inches or another foot of snow.

 While EJ was outside shoveling, I fed and watered the pets, swept the floor, and made EJ an eye appointment for a day when JJ doesn’t have Chemo. EJ desperately needs new glasses. His current ones are all scratched up. I also brought in three armloads of firewood into the house. EJ was done shoveling by this time, so he finished bringing in wood while I made pancakes for breakfast.

Then it was off to the Cancer Center.  We had blue skies and sunshine today, so the drive was very beautiful.

When Chris, the Patient Care Technician, comes to the waiting room to take about back to the Infusion area, he always sounds like the announcer on the game show “The Price is Right.” He exclaims enthusiastically, “JJ, COME ON DOWN!!” Today as we followed him down the hallway, he told us that we were scheduled to be in Room 11 but he was going to put us temporarily in Room 8 because there was still an occupant in Room 11. Our start time was later than normal (11:30 a.m.) and since we are at the Cancer Center for so many hours, the nurses didn’t want any delay in getting JJ hooked up. However, after Sue, our primary nurse today, got JJ hooked up, she gave us a choice to move to Room 11, which was private,  but windowless and very, very small, or to stay in Room 8, which is bigger, has a window, is our favorite room, but which had a roommate. We chose to stay in Room 8. It was a good choice because our roommate left after only an hour or so. Shortly after she left, Chris told us we were going to have another roommate, but a couple of minutes later he told us that they had decided to put that person in a different room. So we had our favorite room all to ourselves almost all day.

Our roommate today was a woman without anyone with her for support. I always think that is sad. She was pretty silent. There was no chatting back and forth. We said “hi” to her, but respected her silence. Not everyone is chatty–or feels well enough to talk. It was ok that our roommate wasn’t talkative because JJ wasn’t feeling particularly well today either.

Room 8. My footstool bag is in front of my chair.
Our half of Room 8. My footstool bag is in front of my chair.

When we come to the Cancer Center, we usually bring 1. Our computer bag filled with EJ’s laptop (which he and I share), JJ’s Tablet, and power cords, 2.  A quilted cloth bag filled with books, snacks, and assorted little things, and 3. A plastic bag with JJ’s wolf blanket in it. The plastic bag was actually a hospital bag that held JJ’s clothing when he had surgery in October. The plastic bag was finally wearing out and ripping, so last night I had to discard it. I was hoping to reduce the number of bags we take with us but the blanket didn’t fit in the quilt bag. So I searched the house and I found a bag that his blanket fit in and which also has pockets to fit a few other things, such as slippers. We have so much snow that I wear my boots to the Cancer Center, but they aren’t comfortable to wear all day inside and I don’t want to have to carry extra shoes, so I now pack slippers to wear once we get there. I was able to put our books and things in the computer bag. Now we are down to two bags instead of three.

Chemo Jan 3 027
All the comforts of home. Almost.

The best thing about the new bag is that it is also a stool so I am able to use it as a footstool while we are in the Infusion Room. Ahhh! Now I am more comfortable sitting in my chair with my feet up. We are getting more “at home” here at the Cancer Center.

We were able to leave the Cancer Center at about 4 p.m. Yay! JJ made in through his second intense week of Chemo. Now we have two light weeks with Chemo only on Mondays.

Bags of fluids.
Bags of fluids pumped into JJ.

We also have to get through the next couple of nights and days. JJ’s Chemo treatment is quite intense–I didn’t know how intense until our roommate on Monday said that she only ever had to have Chemo once a week every other week or so. She and her mother were appalled at how often and long JJ has to have Chemo. The meds make JJ feel increasingly worse as the intense week of Chemo goes by. By Friday night, he is feeling fidgety, restless, anxious, a bit irritable, sleepless, and miserable, and we don’t get much sleep. He should start to feel better by Wednesday next week as his body gets a rest from Chemo. However, added to all this, lately he’s been having trouble swallowing pills. It’s as if his body has had enough of pills and is rebelling. It’s become a real trial for him to get pills down–even small ones.

EJ had enough time to get us settled at home and then he had to go to work. His hours have changed so he goes in a half hour earlier and gets home a half hour earlier. I will be glad when he gets home. The weather could be nasty this weekend, and we will hunker down and relax.

Home Sweet Cancer Center

Last night I was so tired that I fell asleep on the loveseat at about 8:30 p.m. I sleep on the loveseat during JJ’s difficult weeks of Chemo so that I’m available if he isn’t feeling well. I slept until my alarm went off at 2 a.m. so that I could get JJ his anti-nausea pill. He needs to have it every eight hours without fail so I set my cellphone alarm to alert me at the proper times. After I gave JJ his pill, I made sure there was wood in the woodstove, I let my dog Danny outside for a bit, and I got on the computer for a few minutes. Then I settled back down on the loveseat and fell back to sleep until 7 a.m.  The loveseat is a bit short to sleep on comfortably, but I always have a cat–or two or three–sleeping on me, and it’s a very cuddly, comforting feeling that I enjoy.

Once up for the day, EJ and I took care of the pets and since we didn’t have to be at the Cancer Center until 11 a.m., I had time to get the dishes done. We are having some very cold, snowy weather this week. Temps are falling into negative numbers and we got quite a bit of snow last night and are expecting more with some winds. Because of the weather,  EJ decided that we’d take the truck to the Cancer Center today. He cleared the snow off the truck, warmed it up, and I went with him to the bank and the gas station. We stopped at the post office, but then realized it wasn’t open yet. It used to open earlier, and I keep forgetting that it doesn’t open until 9 a.m. now. Rats. I haven’t been able to make it to the post office all week, and I had packages waiting. Disappointed, we drove home. We found that in the short time we were gone someone had nicely plowed out our driveways. It is such a delightful and helpful surprise!

EJ shoveled the walks while I did a few things in the house, and then at 9 a.m. we drove back to the post office for our mail. It was good to finally be able to get my packages. While I was waiting for Tim, the postmaster, to get my packages, I noticed a sparrow had gotten into the building. He flew over my head and then landed on a low hanging light. I hope Tim was able to get him outside safely.

Back at home, I opened the packages with the two cool shirts I had bought for JJ, based on two favorite TV programs (Doctor Who and Firefly). I try to get him a t-shirt every long week of Chemo. I let him choose which he wanted this week. The bear hats I ordered for EJ and me also arrived. I really wanted us all to wear them at the Cancer Center. I thought us three sitting in the waiting area with bear hats on would be funny and make people smile, but my guys both said, “No way, not going to happen, over our dead bodies.” EJ said that wearing the bear hat in public puts the “bear in emBEARassing.” Sigh. So I will just take pictures of us when I can and post them on the Internet. 🙂

Our drive to the Cancer Center this morning.
Our drive to the Cancer Center this morning.

The roads were pretty awful this morning, and we almost spun out on an overpass. However, EJ knows how to drive skillfully in snow so he was able to get us out of the spin very quickly. I’m thankful he drives us to the Cancer Center every day.

Room 2. I sit in the chair in front of EJ.
Room 2. I sit in the chair in front of EJ.

We were put in Room 2 today, which is my least favorite room. It is very small, windowless, and it barely fits JJ’s infusion chair and two chairs for EJ and me. I feel as if EJ and I are sitting in each other’s laps–which in other circumstances would be fine, but not when we have to spend five hours in this room. Still, it is very good to be back “home” in our Cancer Center with our kitchenette and familiar staff and regular routine. JJ’s primary nurse today was Sue, who is very nice and efficient.

During his intense weeks of Chemo, JJ usually starts feeling worse on Wednesdays and smiles less and less.  Thursdays and Fridays he feels progressively worse. He has felt rather miserable today, but he is doing mostly good.

The drive home was uneventful. About an hour after we got home, EJ had to leave for work. His company lets him take half day vacations on days when JJ has Chemo.

One more day to go, and this week of Chemo will be finished.

New Year’s Day Infusion

We actually stayed up to greet the New Year last night. I cared more about sleep than staying up, but JJ wanted to so we did. We got up at 7 a.m this morning.

Today the Cancer Center was closed because of New Year’s Day so we had to go across the street to the Infusion Center. JJ was really dreading it because of the unfamiliar environment and unknown staff. We didn’t know if they’d have drinks available for us. Neither did we know if the hospital cafeteria would be open, since this was New Year’s Day, so I packed a few snacks.

The Infusion Center was located in this building.
The Infusion Center was located in this building.

The infusion center isn’t as nice as the Cancer Center. The tiny rooms were divided by curtains rather than walls. We were in a room that had the blanket warmer so JJ put his footrest down and EJ got of the way whenever a nurse needed to get a warm blanket for a patient. Fortunately, it didn’t happen all that often. There was no kitchenette where we could get our own coffees and drinks so we had to ask for them. Not being able to get our own drinks at a kitchenette meant that I had no real opportunity to stretch my legs. My body is beginning to ache from so many hours of sitting with no exercise. During the next two weeks, when our Chemo schedule is less intense, I am determined to do my best to exercise on the treadmill every day.

The cafeteria was opened today, but EJ had to go up three floors, cross a “sky bridge” over the street to the main hospital, and then down four floors to reach the cafeteria.

The medical staff was very friendly and helpful and got us drinks whenever we asked, but we didn’t like to pull them away from patient care so we didn’t drink as much as we normally would, although I tried to see that JJ had enough to drink. The nurses at the Infusion Center were very good, but they didn’t seem to be as efficient as the oncology nurses at the Cancer Center. No doubt this is because the Infusion nurses deal with a variety of stuff, while the oncology nurses only deal with chemo patients so they are very skilled at it. Also, the oncology nurses are more familiar with JJ’s treatment. We look forward to returning to the Cancer Center, where the staff, environment, and procedures are familiar. 

During JJ’s intense week of Chemo Every Day, the first two days he feels pretty good. On Wednesday he starts to feel a little worse and by Friday he is feeling pretty awful. The worse he feels, the more care he requires at home so evenings and nights aren’t always all that relaxing. We keep telling ourselves that we are more than halfway through this week, and after Friday JJ will be halfway through his four difficult weeks of Chemo.  

Snowy drive home.
Snowy drive home.

There were no windows in the Infusion Center, so we had no idea what the weather was until the end of the day, when the Patient Care Technician told us that it was snowing hard and getting slippery out. The drive home was very snowy, but EJ is very skilled and he got us home without any mishaps. The weather forecasts keep changing so I don’t know how much snow we will end up with, but EJ estimated that we have four inches of new snow at home, and radar shows that it will be snowing for awhile.

When we got home, EJ and I divided up the chores. I settled JJ on the couch, while EJ let Danny outside. He brought in six armloads of firewood while I got the fire going in the woodstove, took out the garbage, cared for the pets, and put more seed out for the birds. We are getting a variety of birds at our birdfeeders now. They are such a joy to watch.

Now we are relaxing. We are exhausted. This week of Chemo feels more tiring than the first week of Chemo.

Tomorrow we have to be back at the Cancer Center at 11 a.m. EJ has to return to work after the holidays at 6:30 p.m. He will probably have just enough time to drop us off at home before he has to leave for work.

 

 

 

New Year’s Eve

Yesterday was JJ’s first day of his second cycle of Chemo. We had to be at the Cancer Center at 10:30 a.m. We were again taken to Room 8, which is our favorite Infusion Room because it is bigger than the others and has a window. We had roommates again–a mother came with her middle-aged daughter, who is suffering her second bout of breast cancer. They were sweet people, and we chatted with them all day,  sharing life stories.  Being in the same room establishes intimacy, so it’s nice when the roommates are compatible and enjoyable. Our roommates made the day go faster.

Sam, the therapy dog, visited yesterday. We have learned that he visits on Mondays. He is such a sweet, gentle dog, and brings a smile to our hearts. We also heard the lullaby music play over the PA six times yesterday, which means six babies were born at the hospital. It played four or five times today.

We expected only a five-hour day yesterday, but it stretched into 6 1/2 hours, making the day very long even with pleasant roommates. Our nurse was very sweet. We were exhausted at the end of the day. My friend, CE, notified me that she had bought us another gift certificate for Chubby’s Cafe so I thankfully ordered takeout as EJ drove us home, and he went and picked up the food after he had dropped JJ and me off at home.

We were the last family to leave the Cancer Center last night, and I think we were also the first to arrive this morning. Chris, the Patient Care Technician, asked, “Did you guys even leave last night???” I was very tired today and my body stiff from sitting for hours and hours. The only walking I get is to the bathroom or the kitchenette to get coffee, juice, or water for us. The late night and early morning at the Cancer Center made it feel like one very long day instead of two days.

Today we were in Room 12. It was toward the end of the hall, out-of-the-way of the hustle and bustle. It was not bad, but it has no windows. I love windows and miss them when we don’t have them. We had no roommates today. Roommates can be interesting and enjoyable, but it’s also nice sometimes not to have to make conversation–especially when we are tired. JJ slept most of the day today. EJ napped some, and he and I shared the laptop between us. When he had the laptop, I read a book.

The nurses at the Cancer Center today all asked what we are doing for New Year’s Eve tonight. Our plans are simple. After a day at the Cancer Center, we will spend a quietly enjoyable evening at home,  and go to sleep whenever we are tired.

Tomorrow the Cancer Center is closed for New Year’s Day, so we have to go to the Hospital Infusion Center across the street for JJ’s treatment. The nurse told us that it doesn’t have private rooms like in the Cancer Center, but “rooms” are divided by curtains. JJ is a bit nervous by the change of scenery and staff. There is comfort in familiarity.

I have packages waiting at the post office–including one from a friend–but I couldn’t get them yesterday because we got home so late. We drove to the post office on the way home from the Cancer Center today and would have made it in plenty of time…if it weren’t New Year’s Eve and the post office hadn’t closed at noon. Now I can’t get the packages until Thursday because the post office is closed tomorrow for New Year’s Day. It is hard for me to wait.

Chemo Cycle 2

Yesterday morning I got up early, wrote a post for this blog, and then fell back to sleep on the loveseat. I slept until noon. So did JJ. EJ slept pretty late too. We spent a very lazy day–none of us even changed out of our PJs!

Today we were busier.

EJ fixed the gasket around the woodstove door, which had come off.

Then he drove to the store to return some laundry detergent he had bought on when he went shopping on Christmas eve. He forgot that our new washer requires HE (high energy) detergent and had bought just the regular kind. Also, on Christmas eve there had been some tremendous bargains, but those items were quickly gone so EJ hadn’t been able to buy Canada Dry Ginger Ale, so he bought some today. The Ginger Ale really helps JJ when he is feeling nauseous.

While EJ was gone, I did dishes, cleaned the house, did laundry, fixed lunch. I also looked up the website of a local opthmalogist and added their number to my cell phone so I can make an appointment for EJ tomorrow. He hasn’t had new glasses in several years, and I don’t even know how he can see out of his scratched lenses. After he gets new glasses, I will make an appointment for myself because I haven’t had new glasses for several years either. My glasses aren’t as bad as EJ’s, although my eyes seem to be not as good as they used to be.

When EJ returned from the store, I helped him bring in the groceries and fed him. After a bit, he fell asleep in his chair. I very quietly put on my boots and coat to sneak out and unload the firewood from the pickup truck, but he heard me and exclaimed, “Ah ha! I caught you!” He got his coat on and together we unloaded the truck, and then brought firewood into the house. When we were finished, he split a couple of the bigger logs while I cleaned out the litter boxes and took out the trash. The bag broke at the end of the driveway, so I had to get another bag and pick up the trash.

Later this evening, I made sure our bags were packed to take with us to Chemo tomorrow. Tomorrow begins his second grueling week of five hours of Chemo every day. JJ is not looking forward to it, but he has incredible courage and strength.

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.

Our regular Shabbat table.
Our regular Shabbat table.

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.

Vladimir
Vladimir the Vicious

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.

Prince Humberdinck in The Princess Bride.
Prince Humberdinck in The Princess Bride.

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:

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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.”

Mr. Clean
Mr. Clean

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.”

Scruffy looking nerf-herder.
Princess Leia: Why, you stuck up, half-witted, scruffy-looking nerf-herder.

 

“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?

Fuzzy Wuzzy
Fuzzy Wuzzy

 

 

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.

A happy heart is good medicine, but low spirits sap one’s  strength. (Prov. 17:22)
A happy heart is good medicine,
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.

Michigan map
Michigan map

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?

Bear Hat
Bear Hat

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.

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Ice Storm

Bad storms in the USA.
Bad storms in the USA.

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.

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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.

Not Out of the Woods
Not out of the Woods yet

 

 

 

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:

Dec 18 001
JJ’s Doctor Who shirt

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.

JJ's and his beloved cat, Luke.
JJ’s and his beloved cat, Luke.

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 and his owner
Sam and his owner

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.

Dr. Hamdam
JJ’s Oncologist

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.

Praising through the snow.
Praising through the snow.

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.

Chinese Celebration
Chinese Celebration

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.

Watching Doctor Who
Watching Doctor Who

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.

Totally, Completely Hooked on Who
Totally, Completely Hooked on Who

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

Kvetching Order
Kvetching Order

…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.