I Love To Go A Gardening
Growing Our Life in Northern Michigan
Bald Eagle Scout
There are days when we are running to the Cancer Center for JJ’s Chemo treatment or to the lab for his blood tests, and there are days when we are running to do tasks like grocery shopping, and on the days when we have nothing to do, we feel totally unmotivated–like electronic devices that are blinking “low battery.” On those low battery days, We barely have enough energy to do the basic tasks. I guess these are the days we take it easy and recharge.
In spite of our low batteries, this morning EJ and I walked to the post office. The temperature was 11 degrees, but it felt warmish compared to the -16 degree temperatures we had a couple days ago. The sun shone and made the snow sparkle. I have always been mesmerized by the beautiful sparkles in the snow. I tried to take pictures of the snow, but my camera is not good enough or I am not skilled enough to capture the sparkles. I have friends who have really good cameras and lenses, and awesome photography skills, and they take the most beautiful pictures. I have chosen to just get a small camera that I can slip into my purse and pocket and have available whenever I go for a drive or a walk. I am not a photographer who deliberately plans and sets up an awesome artistic shot. I am a spontaneous sniper photographer who takes unexpected quick shots.
After we left the post office, we walked to the bank. LM handled our transaction. She not only works at the bank, but her son was in the same Boy Scout troop as JJ. She asked for an update and then said, “Tell JJ ‘hi’ for me–and also tell him that I think of him as my ‘bald eagle.” EJ and I laughed about that all the way home because JJ is an Eagle Scout–a Bald Eagle Scout. Ha ha ha. That’s the funniest bald joke I have heard so far.
When we got home, I said to JJ, “Hey, LM at the bank called you her ‘bald eagle! Ha ha!” JJ gave me his pretend “I am going to kill you for that remark” look. He actually handles his baldness (and jokes) very well. However he said having very short hair is not the same as having no hair. With very short hair, a guy still has hair. With no hair at all, his head gets very cold.
Seriously, though, I think JJ’s courage and strength and good attitude through all this displays the qualities of a true Eagle Scout. So calling him our “Bald Eagle Scout” is a term of honor, in my opinion.
For lunch we just put the dutch oven back on the woodstove and had leftover stew. It was yummy and we ate it all. Tomorrow I will actually have to cook something again.
In the afternoon, I brought in firewood, paid bills (yuck), did a bit of laundry. After I got my chores done, I got on my PJs. It’s been that sort of day.
JJ seems to be feeling quite well, but he’s dreading Cycle 3. “I don’t want to go,” he said. “So what do you want to do about it?” I asked. “Stage a rebellion?” We fantasized about rebelling for a bit. Sometimes it helps to pretend you don’t have to do something that you really have to do. JJ is committed to Chemo, and that’s the way it is.
Tomorrow we have to drive back to the city for JJ’s weekly blood test. That will only take a little bit of time, so I’m hoping we can stop at a Verizon store and get updated phones. I didn’t go through JJ’s pockets last week, and his phone went through the wash. I think it’s completely, utterly dead.
Busy Doing Nothing
This morning my phone rang at about 6:30 a.m. I saw it was from my sister-in-law and my mind immediately leaped to a list of possible bad news. People, especially family, don’t call during sleeping hours unless something is wrong. Bracing myself, I answered the phone. My sis-in-law said, “I just got a phone call from you…Is everything ok?” I didn’t call her, and EJ didn’t call her, and JJ didn’t call her. I suspect it was Luke, our genius cat. A cat who can teach himself to use the toilet, who can open shut doors, who reaches out to grab us when he wants something, and who sometimes uses the remote to change TV channels, can surely dial the phone. I wonder why he called her? Did he think he wasn’t getting enough of his Very Special Cat Food?
After my sis-in-law and I verified that neither of us had called with bad news, we hung up and I went back to sleep for a couple more hours. After a busy day(s) at the Cancer Center, we are always very exhausted. It’s as if we push all our tiredness aside during the busy days of Chemo and then it all hits when we can stay at home. We usually spend the day after Chemo resting and doing as little as we can. EJ is especially exhausted, but he could only rest this morning. He had to go to work this afternoon.
I did do a few things. I walked to the post office for our mail for the first time this week. It had warmed up to 6F degrees–practically a heat wave. The walk was pleasant, but I got mostly bills, bills, and medical bills in the mail. Bleagh.
Before I went to the post office I cared for the pets. After I got home, I filled up the birdfeeders. Then EJ and I brought in the day’s firewood.
Yesterday before we left for the Cancer Center, I put together a stew in the crock pot. I set it on low just in case we were delayed–you know, got stuck in the snow or something. It wasn’t done when we returned so we had the last of the leftover chili for lunch, which was delicious. Today I put the stew in a Dutch oven and put it on the woodstove and let it heat up while EJ and I were doing our chores. It was very good.
JJ seems to be feeling pretty good today. He didn’t wake at all last night or need any anti-nausea meds.
This afternoon I played around a bit with the look of this blog, changing the layout from one sidebar to two and a few other minor things. If I (or you) don’t like it, I will switch it back. What do you think?
My friends on Facebook are taking pictures of themselves and/or their pets wearing silly hats to show love and support for JJ. I am collecting them all in a FB album and I plan to print them out and make a scrapbook of them at some point. The pictures are awesome and we are enjoying them immensely. I would share them all here except I don’t know if my friends would like their photos splashed across the Internet. But I will share one of a cool Michigan Search and Rescue dog named Xenia. She has her own Facebook page called “Xenia the Bloodhound.” She wrote JJ a very cute email the other day, which I thought was very sweet:
Hi JJ, my name is Xenia
Do you wanna be friends?
I am a bloodhound, as you probley already can tell!
I’ve been busy sleeping today cuz there is nothing for me to do. The snow is way over my head and the wind is do strong it about blows me away when I am outside! Mom said its cuz of my big ears and I am like an airplane!
Have you been outside yet? DONT DO IT ~ if you don’t have to! You will freeze!
I am usually pretty busy getting into trouble during the day. I keep my mom busy chasing me around .. and teaching my dad to pick up after himself. If he doesn’t pick his hat gloves boots coat toothbrush or anything like that up, I just take it! I like to run around the house with it and chew it up! I am really good at it!
I am a trailing dog too! I find missing or lost people. I love my job and I hope to be really good at it when I finish growing up. I started school when I was only 9 months old! Do you go to school? I am hoping to take my level 3 test in a few weeks. Then I can start working. I am with Michigan search and rescue. Did I tell you how old I am? I am only one. I just turned one the end of October, near holloween. Mom said its cuz I am a monster! Whatever that means. I think it means she loves me tho.
Do you like to fish? I do! I like boat rides and fishing! My mom said she likes ice fishing the best. I don’t know why we aren’t fishing today cuz I think we have lots of ice. Maybe she will take me sometime.
Do you like to shop? I do! My favorite store is Meijers! Cuz every time I go in there, everyone likes me. Sometimes I put on a show and blink my eyes cute so people will come pet me. It always works and it’s fun!
You know what my mom did? She dressed me up like a fairy princess!!! I had to wear a tutu and butterfly wings and a crown on my head… In PINK!!! Then she shoved me into a kissing booth and I had to kiss people all day! Have you ever had to do that???
What kinds of things do you like doing?
Do you have a dog?
If you want, I can write to you again. I am not real good at writing yet but I like doing it.
I hope you are staying warm today.
I have FB too. Xenia the bloodhound.
Hope to hear from you…
~ Xenia (the warrior princess)
I loved the letter. I think it was sweet of Xenia to take the time to write to JJ. I think pets–and their people–are very sweet.
Well, now I got to get busy doing nothing. Maybe I might even get motivated to take a nap.
Common Things
JJ’s rescheduled Chemo appointment was for this morning at 10:30 a.m. Just before 9 a..m., EJ went out to start the truck to warm it up. It cried in protest at starting on such a cold morning: the temperature was -16F degrees, and I think the wind chill was in the -40-somethings. Brrrr.
The roads were good and we would have had no problems driving to the Cancer Center except that it was so cold that the truck was stuck in third gear. EJ had to drive all the way to the Cancer Center at no more than 45 mph. Because he couldn’t drive fast, he did not take the highway. Instead, he drove the back ways through the city streets.
We were less than ten minutes late, but it didn’t really matter that we were late because Sue, our primary nurse today, said that it was a crazy morning. A lot of the chemo meds were late getting to them from the hospital pharmacy. We enjoyed talking to Chris, the Patient Care Technician as he took JJ’s vitals. We learned that a few years ago he got his dog from the family of one of the Boy Scouts in JJ’s troop. Small world.
JJ is supposed to notify the nurses if he notices any changes in his health. Today he told the nurse about small burning sores he has noticed on his hands, so she notified his doctor, who came in to examine the sores. They are a side effect of the chemo drugs, but they aren’t so bad yet that they have to be treated. We just have to keep an eye on them.
Every day during JJ’s intense weeks of Chemo, he is given Etoposide and Cisplatin in his IVs, along with a couple bags of saline solution. On Mondays, he is also given Bleomycin, which is why those Mondays are so long. On his “off” weeks, he only gets Bleomycin on Mondays, so those are very short days. Although today is actually Tuesday, it is JJ’s “off” Monday because we couldn’t make it to the Cancer Center yesterday in the bad weather. Along with the Bleomycin, JJ is always given Benadryl and Tylenol–I think to reduce side effects or something. The Benadryl always makes JJ very sleepy, so he sleeps through most of the treatment. Often he also sleeps when we get home, but today he didn’t.
We were in Infusion Room 6 this morning. We’ve never been in that room before. It was one of the smaller rooms, but it was right across from the nurses station and the kitchenette, so I was able to get different types of pictures, including candid pictures of some of the nurses sitting at the station. I really enjoy the medical staff. I think they are the one thing I will miss when our cancer adventure is finished.
The 90 minutes seem to just fly by today. Maybe because it was such an adventure getting to the Cancer Center. Almost before we could catch our breath, we were leaving for home. We now have no appointments until Friday, when we have to take JJ to the lab for his blood tests.
When the nurses told us that JJ was almost done for the day, EJ left to warm up the truck while I stayed with JJ. One the way home, the gears finally got unstuck so EJ was able to drive normal speed. This was good because he had just enough time to help us bring our luggage into the house before he had to leave for work. He didn’t even turn off the truck when we got out.
I couldn’t take pictures on the way to the Cancer Center this morning because the windows were snowy and somewhat frosted. The window was cleared enough for us to see through, but not clear enough to take good pictures. However, I was able to take pictures on the way home. It’s always sort of fun taking pictures from a moving vehicle because I can’t always be sure what I will end up with. Sometimes I see something interesting, but it whooshes by before the camera captures it. Other times I have the picture zoomed too far in or out to get the picture I want or the angle is wrong. And other times the camera doesn’t capture what I wanted, but it captures something even more interesting. A few times I actually get the picture I was aiming for. I sat in the cramped back seat of the truck today so JJ could be more comfortable, which made trying to get a good shot even more challenging since I had to shoot past EJ and JJ’s heads.
Today I had fun taking pictures of common things in addition to beautiful scenery. I don’t know how to explain it, but I think the everyday common tasks, routines, and things are beautiful. I love the song “Tradition” in the movie Fiddler on the Roof because the everyday tasks provide the musical rhythm to the song. That is how I view life. It’s the little things that make up the background rhythm to life more than the occasional big event. So today I took pleasure in taking pictures of people at work, the patterns in the snow, and other such small things.
After EJ left for work, I did my outside chores since I already had my coat, hat, mittens, and boots on. I put more wood in the woodstove and then I brought firewood into the house, let Danny out and back in, took out the trash, care for the cats. Then I mopped up all the snow I had tracked into the house, and I swept the floors. I fixed lunch for JJ and me. Then I poured myself a cup of coffee and sat down to write this post.
Here are some of the pictures I took today:
Hunkering Down
First thing this morning I got dressed and went outside to care for the outside cats. I was worried about the cats being too cold in this weather, but we can’t risk them bringing any illnesses into the house with JJ’s immune system so severely compromised. I considered putting them on the back porch, but they wouldn’t be any warmer there. So EJ lined a large wooden box with insulation (on the walls, ceiling, and floor) and he put a small light inside to help warm it. I put a blanket in the box and I also periodically warm a rice bag (a bag made of an old towel filled with rice) in the microwave and put that in the house to add more warmth. We put the box under the patio table on the front porch with a tarp over everything as a wind break. As the snow accumulated, it covered the tarp so it looks like an igloo. Snow provides good insulation. I put my hand in the house and it is very warm inside. I think the cats are much cozier in their shelter than in the shelters The Weather Channel recommends making for outside cats. And my friend who studied animals back in college reassured me that our efforts were excellent.
While I was outside, I also fed the birds. I usually go through the front gate, but it had so much snow piled against it that I couldn’t get it open far enough to go through it. So I came in the house and through the back door and around the house to the feeders. The snow was very high and went up almost to my thighs. It was hard work getting to the feeders, but I made it. I am so glad I bought the feeders because watching the birds provides us with so much joy. Today the wind is so high that it pushes the birds backwards as they fly. They are clever though: They fly past the feeders and let the wind push them back onto the feeders.
The birds are just now discovering the see-through feeders attached to the windows. It’s so cool to see them up close. The cats are having a lot of fun leaping up at them. The birds are used to them now, and are getting bolder. They are even sitting on the window sill watching the cats.
After I cared for the cats, the birds, and made breakfast for my guys, I called the Cancer Center. I talked to the front desk, then talked to the doctor’s nurse, and then talked to the nurses at the Infusion Rooms. They all said that the Cancer Center was opened, but that the roads were treacherous. They said nine patients had already cancelled their appointments. I decided that we would be the tenth patient to cancel. I asked the Infusion nurse if we could reschedule, and she said she’d work on the schedule and call us back. I’m sure that so many people canceling is making the re-scheduling a nightmare.
I hated to cancel JJ’s treatment because I do not want anything to delay or interfere with his destroying this cancer. We would have driven in despite the deep snow and the extreme cold if it weren’t for the high wind. The wind will cause whiteouts and drifts and could make roads impassable. We couldn’t risk getting stuck. I appreciate a friend’s comment at FB: “God is still in control, you made a wise choice and a snowstorm won’t stop God from working in JJ’s body.”
So we are hunkering down today.
Our friend in Iowa sent us an awesome box of goodies the other day, filled with granola bars and packages of hot cocoa mixes. There were four varieties of hot cocoa: Arctic White, Caramel Chocolate, S’mores, and Warm Oatmeal Cookie. JJ chose Warm Oatmeal Cookie, so I made him a cup. It smelled delicious and JJ said it tasted delicious too.
In her box of goodies, my friend also sent me an old Jewish High Holiday Prayer Book which she thinks might have belonged to her mother’s parents. She has another prayer book that she is keeping for herself, of course. I will treasure this book. It is full of wonderful information and beautiful prayers. It is written on one side in English and another side in Hebrew. For the last few years I have been studying Hebrew and maybe one day I will know enough to be able to actually read the Hebrew side of the book.
EJ wasn’t sure this morning if he’d have to go to work this afternoon, so he went out to dig out the truck. After he bundled up in his long underwear and heavy coat, I laughed that he looked like the little brother in the classic movie, A Christmas Story. Ok, maybe he didn’t look that bundled, but he almost did.
The vehicles were buried under a ton of snow. While EJ shoveled them out, I went outside to take pictures. The wind was blowing the snow sideways and it was VERY cold. Currently the temperature is zero, but the weather app on my computer says it feels like -27 because the wind is so strong.
There on many warnings that the roads are treacherous and the cold dangerous, and that people should stay off the roads unless travel is essential. Schools and many companies closed today. Even Michigan State University and the State government were. Not my husband’s company, however. I was not happy that they expected employees to drive in this dangerous weather. They make car parts, which is not essential. EJ didn’t want to risk it, so he called in a vacation day.
Now that I know we are all safe at home, I am enjoying the storm again. I love snow storms when we are snuggly warm in our house. We warmed up the chili I made yesterday for lunch. It tasted extra yummy.
We will brave the weather at least one more time. I need to feed the birds again and EJ is going to bring firewood into the house.
The Cancer Center just called. We now have an appointment for tomorrow morning at 10:30 a.m. Hopefully we can make it.
The Snow Storm
It started to snow last night. About 10:30 p.m., EJ and I got on our coats, hats, boots, and mittens and went out into the snow. I like taking pictures of the snow at night using the flash on my camera. The flash reflects on the snow and makes interesting pictures. I call it “snow art.”
We got about six inches of snow overnight.
EJ left about 9:30 a.m. this morning to drive to the next town to get JJ’s anti-nausea prescriptions filled. We have two different types of anti-nausea meds. One he has to take every eight hours, and the other he takes if there is “breakthrough” nausea–i.e., if he feels nauseous after taking the first med. I had quite a few of the breakthrough meds left, but had EJ fill that prescription as well so we don’t risk running out. I do not want a repeat of getting too low.
While EJ was gone, I walked to the gas station store to get some eggs because I only had one egg left. People were out plowing drives and shoveling sidewalks. The village guy was plowing the streets. I always think such activity is interesting. A neighbor used his little riding lawn mower to plow our sidewalks this morning. Another neighbor who was shoveling her sidewalk called out to me and asked about JJ, so I paused and filled her in. I don’t know this neighbor very well. A couple of years ago she moved next to her parents. She said they are all very concerned for JJ and asked if there was anything they could do to help. People are so good. I told her that JJ lost his hair on Christmas Day, but we had joked about it. I also said that JJ’s attitude is really remarkably good. He used to moan and groan about a tiny papercut, but he is handling cancer with great strength. She said she is glad we can laugh. Her elderly dad had cancer and he really struggled with depression through it. He was always so kind whenever we encountered him that I didn’t know that he struggled so much. People always say they are doing “fine” through cancer. They never talk about what they are suffering, which is why I never really knew before. Now I know firsthand what they do not say.
When I got home from the little store, I brought in firewood, took out the trash, swept the floors. Then I began lunch. I decided to make another pizza because it was SO GOOD, and I wanted to use up the rest of the sauce and toppings from yesterday’s pizza. I also made a chili for later. Chili on a cold day is yummy.
It didn’t really snow while EJ was gone. When he returned, he said he had no problem driving to the store and back. He grew up in the country and his family used to get snowed in by several feet of snow every winter. He learned how to drive in snow, and it doesn’t bother him. Me? I am white-knuckled and stressed if I have to drive in bad weather.
The meteorologists keep increasing the inches of snow we are expecting. The latest report is that we could get 15 inches of snow. It started snowing again at noon and then increasingly heavy after that. They say we could get up to 2 inches of snow an hour, and might even get thundersnow. Thundersnow is when it snows so heavily that it actually causes thunder. The temperature will also plummet this afternoon. Right now the temps are in the 20s, but the low tonight is 0 degrees and the low tomorrow will be -14 with wind chills much lower. The wind is supposed to pick up soon.
Now that EJ is home safely, I am enjoying the snow. I always get excited when a big storm approaches. I think I’ve never gotten over my childhood excitement at the approach of a big snow storm. My siblings and I always hoped for big storms so we could have a “snow day” and get out of school. We used to call a phone number the evening before to see if school was canceled the next day. This was back before the Internet. Often we got a busy signal because every other kid in the region was also trying to call the same number. We’d call, busy signal, hang up, and immediately dial again…and again…and again, until we finally got through. If our school was canceled, we’d whoop and dance in delight. If we had school, we’d groan in disappointment and stomp off to bed. We had snow all winter long, but sometimes we had HUGE storms. When I was very young, we had a big snowstorm with drifts piled high. My older siblings jumped off our front porch into huge drifts like they were jumping off a diving board. My Mom wouldn’t let me or my younger sister outside because she was afraid we’d get lost in the drifts. I remembering crying at the door as I watched the older ones having so much fun.
I have fed the birds three times today. They are really flocking to our birdfeeder. EJ says that just before a storm, birds often eat heavily. We have had so much delight in watching the sparrows, chickadees, tufted titmouses (titmice?), juncos, cardinals, blue jays and other birds visiting the feeder. Our cats are enjoying watching the birds too. Timmy, especially, is a birdwatcher.
The last time I went out to feed the birds, I noticed that our neighbors had gotten a bit stuck in a snow drift while turning onto our street. We live on a corner and the street where our driveways are isn’t plowed. I ran in and got EJ and he helped them get unstuck. The wife said that they went to the city where the Cancer Center is located. Visibility was bad and they drove home at 40 mph.
Afterwards, EJ and I went for a snow walk. We walked to the little store I went to this morning. We love walking in snow storms and ice storms and wind. The snow is coming down fast and heavy. The sidewalk that our neighbor plowed a few hours ago already has four inches of snow on it. I took my camera with us and took pictures. The pictures don’t really show how hard it is snowing. We had lots of fun on our walk.
Later Danny wanted outside. When I went to get him a few minutes later, he didn’t come to the door. Since I didn’t have a coat or boots on, I went back in the house to look through the windows and try to locate what part of the yard he was in. I found him under the birdfeeders, already covered with snow. Probably he was sheltered from the rising wind in that spot. I got coat and boots on and went to the front gate to bring him in.
I might like the snow less tomorrow when we have to go out in the storm to drive to the Cancer Center for a 90 minute Chemo session. It should be interesting. I am very thankful I have EJ to drive us there.
Today, JJ is struggling some with nausea. TR, a guy who has the same cancer as JJ–he is the guy the oncologist connected JJ with–said that at each cycle of Chemo, JJ will likely feel worse and take longer to recover. But at least now we have plenty of meds.
Dashing Through the Snow
We made it through the night ok. I woke JJ at 3:30 a.m. to give him his anti-nausea medication, and I don’t think he slept well after that, but he wasn’t so ill that he woke me up. And shortly after I got up in the morning, he fell asleep for a few hours.
A big snow storm is headed our way. The meteorologists have changed the amounts of snow for our area several times. At first it looked like we were only going to get a few inches, but now it looks like we could get a foot or so. The city where the Cancer Center is located could get 20 inches, which might make our trip there on Monday “interesting.” When I was a child, we always got quite a bit of snow like this, but the winters have been mild for the last few years.
We also are expecting very cold temperatures. I heard wind chills could get to -30. EJ said he heard they could reach -70. Brrrrr.
We spent the morning getting tasks done. JJ was hungry for pizza, so I made homemade pizza for him. I keep searching for the “perfect” pizza dough, and I used a new recipe today. It was very good. My favorite so far.
JJ is having a lot of trouble getting pills down these days. He’s also having trouble gargling. Both make him gag. He is supposed to gargle with a cup of warm water, baking soda, and salt to help prevent mouth sores. He felt mouth sores forming so he tried to gargle again late this afternoon, but ended up vomiting. This is the first time he has vomited since Chemo began. It came unexpectedly, so he didn’t make it all in the toilet and it was a bit of a mess. I pulled on my blue medical gloves because JJ’s bodily fluids are toxic, and I cleaned the bathroom really well and did more laundry. Poor boy.
JJ has to take his anti-nausea pills while on Chemo and for 48 hours after his last Chemo treatment, so during his “off” weeks he doesn’t take them much. I’m really kicking myself because when I gave JJ his anti-nausea pill this evening, I saw that I don’t have enough left to make it through tomorrow. When I had checked a couple of days ago, I had really thought we had enough to last until next week when we had more time to get to the store, but apparently not. Last time, I had refilled our prescription at the end of his first cycle of intense Chemo, but I learned not to give him a pill before we go to the Cancer Center because the nurses give him the anti-nausea medication in his IV. So, I was only giving him two pills each day rather than three. I think each prescription lasts only about a week. I don’t know why they don’t give us more because we don’t have enough to get through a whole cycle. During our intense week of Chemo, we don’t have time for much of anything. We rush around in the mornings to get to the Cancer Center, then afterwards we have to rush to get home so EJ can get to work. Sometimes we dash into the store and dash out, but after a day of Chemo, JJ just wants to get home so we do as little as we can and rush. This last week we were so tired at the end of each day that we could barely think.
I felt panicked about not having enough because the pharmacies were already closed tonight and our regular pharmacy isn’t opened on Sunday. I called another place and learned that they are opened tomorrow. Whew. The problem is that EJ will have to drive ten miles through snow and wind and cold to get there. EJ says, “No problem.” He drives skillfully in snow, but I still worry when he drives in bad weather. I had thought we had everything we needed so we’d all be able to hunker down and not go anywhere tomorrow. So I am really upset with myself. Next time I will get another prescription refilled just before Cycle 3 begins so I will have almost two complete bottles–surely more than enough to get me through.
I just pray the roads are too bad for EJ to dash safely through the storm to the pharmacy and home again tomorrow.
At this moment, the cats are going after a mouse. We always know when there is a mouse because the cats growl. I wonder, with the weather getting so bad, how many mice will try to find refuge in our house? Hopefully, not many. We already have enough excitement in our lives.
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.
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.
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.
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. 🙂
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.
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 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.
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.
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.
I Love To Go A Gardening 