I Love To Go A Gardening
Growing Our Life in Northern Michigan
Injection & Exam
As we have all week, we woke up this morning at 8 a.m., left home at 9 a.m., and arrived at the Cancer Center at 10 a.m. for JJ’s injection to force his bone marrow to produce blood cells.
On the way to the Cancer Center yesterday, JJ told me that I shouldn’t “tattle” on him, but let him informed the doctor of health issues. I did tell him that I tattled on him last time only when the doctor was gathering his files and getting ready to leave the room and JJ still hadn’t spoke up. Still…JJ told me to let him speak for himself. Ok, so I didn’t say anything yesterday about the sore throat JJ has had for the last couple days, which we have learned means that the mouth sores caused by the Chemo have become infected. And then JJ forgot to mention it to the nurse. I thought that was funny, although the truth is that we are in and out of the injection room so quickly that we all forgot about his sore throat until we were driving home.
So today we all told ourselves to remember to mention the sore throat because we can’t let the infection worsen, especially with his white blood cell count being so low. As soon as we entered the InJection room, JJ remembered to mention his sore throat and the nurse left to informed the doctor. When she returned, she gave JJ his injection, laughing at our banter. We are like a three-person comedy team when we get joking around. When she finished, the nurse led us to an Exam Room because the doctor wanted to check JJ’s mouth. There is a special room for everything at the Cancer Center–Infusion Rooms where Chemo is given, InJections Rooms, Exam Rooms.
We waited for a bit and then the oncologist came in, told JJ to open his mouth and say “Ahhhhh,” peered in JJ’s mouth, and said, yes, he has an infection. He wrote a prescription for JJ and left. We like the oncologist, but we don’t see him as much as the nurses.
JJ was given Augmentin, which is the same antibiotic the doctor gave him the last time his mouth sores got infected. JJ has to take one pill twice a day. He has trouble swallowing them because the pills are HUGE–875 mg. To help him get them down, we cut them into four…five…six pieces…or however many pieces that are small enough for him to swallow.
I took a picture of the pill next to a quarter so you could see how terribly, awfully big they are. I don’t know that it’s humanly possible to swallow such large pills:
JJ wasn’t hungry this morning so he didn’t eat breakfast and he was very hungry when we left the Cancer Center. He asked if he could have Chinese food, so I called ahead and it was ready by the time we reached the restaurant to pick it up. We only ordered a meal for JJ because EJ and I had eaten breakfast and weren’t hungry for lunch yet. Although, I did order an egg roll for myself because I love them. We also stopped at the pharmacy to get JJ’s prescription filled.
When we arrived home, my guys got out of the car and I drove on to the post office for our mail. We didn’t get anything good. When I got home, I made a lunch of leftovers for EJ and me while JJ ate his Chinese food. Then EJ left for work and I did my afternoon chores, bringing in firewood, doing dishes, putting away clothes I had washed a couple of days ago, and so on.
We have Wind Chill Advisory for our state for the next couple of days. The local meteorologist says that there will be “High wind (40 mph) and wind chills nearing minus 30 degrees on Friday. Blowing and drifting snow will also be a problem. Those gusty winds will be strong enough to bring down branches that may have been become weak by the ice storm last December. Blowing snow will reduce visibilities on Friday and Saturday.” I think that the most severe weather will hit Friday evening, hopefully after EJ is home from work. This weekend we will stay snug and warm in our house…unless EJ has to work.
The Etsy Hats
Like yesterday and the day before, I woke my guys up at 8 a.m. so we could leave at 9 a.m. to drive to the Cancer Center for JJ’s injection. JJ struggled to wake up and was slow getting ready. I told him he had time to eat breakfast, but he said he wasn’t hungry yet. So I put Cheerios in a bag so he could munch on them if he got hungry on the drive. JJ reminded me to get him some juice in a styrofoam cup for him to take along, and I remembered to grab the bag of extra clothes I had put together for him last night. We will keep them in the car so he has clothes to change into if he has another episode of vomiting. As we headed out the door, I exclaimed, “Oh, wow, this reminds of when JJ was a toddler and we had to bring along a diaper bag, sippy cup, and bag of Cheerios. I think we are reverting back.” We all laughed.
Our trip to the Cancer Center and back was uneventful. JJ was in a happy mood. We discussed cancer and he said that he sees his cancer as a problem to be managed and to get through and not something that is life-destroying.
On the way home we stopped at the grocery store. Whenever JJ has to have the IV needle inserted into his port, he puts on a special cream an hour before to numb the area. I wanted to make sure we didn’t run out so I had phoned the grocery store pharmacy on Monday, intending to pick up the prescription on Tuesday. However, yesterday JJ needed to get home and cleaned up as soon as possible so we didn’t stop. We stopped today instead. Since we have to keep JJ away from public places because his white blood cell count is so low, EJ stayed in the car with JJ and I went into the store. I also bought a few other things, like juice (which was on sale) and Tylenol, which we were almost out of. We can give JJ Tylenol when his body aches from injections. Fortunately the injections he is receiving this week aren’t as bad as the previous one he had a few weeks ago, so his body doesn’t ache quite so bad.
As soon as we got JJ and the groceries in the house, I drove to the post office to pick up our mail. I was glad to see a package in the mail that I have been eagerly waiting for. It was a surprise gift for JJ from my friend CE.
A few weeks ago, when my friend heard that JJ’s bad head was very sensitive to cold and that he was having trouble finding a hat that didn’t feel heavy and scratchy and painful on his head, she spent several days searching the Internet for the perfect soft and light hat to buy him. It’s easy to find hats for women with cancer, but not so easy to find one for men. My friend finally found a hat made of a soft merino/cashmere blend from a business called “A Walk in the Woods Knits” at Etsy.com. My friend emailed the owner to make sure it was the softest hat she sold, explaining that the hat was a gift for an 18-year-old friend who was battling cancer and who had lost his hair as a result of Chemo. The owner responded that she also had an 18-year-old son, and she hated that such a young man should have to suffer from cancer, so she said she was including a second hat at no charge as a gift. These hats are quite expensive, so I consider it a sacrifice for both my friend and the owner to give such a gift to JJ. I can comprehend that a friend would give JJ such a gift, but it amazes me that someone who had never met him would do so.
When JJ opened the package, I told him the story of the hats. He was impressed with the softness of the hats and with the awesome gift from both our friend and the maker of the hats.
There are many sweet and loving and compassionate people–both friends and strangers.
A Special Time of Love
We do not have a “set in stone” appointment time for JJ’s injections this week, so I woke my guys up around 8 a.m., and we got in the car about 9-ish for the drive to the Cancer Center. We figured that arriving at 10 a.m. was a good time–not too early and not too late.
Our drive was quite eventful. Everything was going well, the sun was shining, the snow beautiful when JJ suddenly started vomiting. He heaved after heave after heave. Poor guy tried to catch it in a blanket we keep in the car, but it went all over the floor, his boots, his hoodie, his jeans, his hands. As soon as he could, EJ pulled into a party store parking lot. I stayed with JJ while EJ went into the store to buy paper towels, garbage bags, and Kleenex. After he stopped vomiting, JJ took off his hoodie. He didn’t want to go into the warm store, he didn’t want to sit in the car, and he couldn’t stay in the sub-zero cold wearing only a T-shirt so I searched and I found an old sweatshirt EJ had left in the car some months earlier. It was dirty and stained, but better than a vomit-soiled hoodie. JJ went over to a snow bank at the edge of the parking lot and used snow to wipe off his hands and clothes. EJ came out with his purchases and he quickly cleaned out the car, throwing out the blanket, the car mats, the hoodie, and the now soiled paper towels while I put them in garbage bags.
JJ felt bad that he had messed up the car–I don’t know if the vomit smell can ever be fully eliminated? But we reassured him that it was absolutely ok. It came without warning and it’s not like he could have prevented it, for goodness’ sake. “And besides,” his Dad reminded him with humor, “We are giving you this car, remember? So it’s YOUR car you vomited in, not ours.”
JJ was feeling better and he still needed the injection to boost his white blood cell count so we continued on our way to the Cancer Center in a car reeking of vomit. What else could we do? JJ handled it all with a good attitude, saying he was willing to continue on and that he’s had worse days. But note to selves: We will now keep a change of clothes, paper towels, and garbage bags in the car for future vomit emergencies.
JJ asked what we were going to do when we got to the Cancer Center. The thought of sitting in a waiting room of people with a dirty sweatshirt and jeans and boots splattered and smelling of vomit was horrifying. I had already been pondering this problem. “This is what we are going to do,” I said. “JJ, you won’t stop in the waiting room. You will go on through the door (the one we walk through every time to get back to the Chemo rooms) to the bathroom on the other side and stay in there. I will go up to the counter in the waiting room and inform the receptionist that you are here, and I will also tell her that you vomited on the drive in, and that you would be in the bathroom, and that it would be extremely helpful if you could get your injection as soon as possible.” And that is what we did, although when EJ and I got back to the bathroom, JJ ended up coming out and waiting in the hall with us for the nurse to take us to the Injection Room.
While we waited in the hallway, we were able to see again the elderly couple whom we had encountered yesterday–the ones who I knew throughout my childhood. Their daughter was with them, and it was good to see her too. We had only time to share what types of cancer our families were dealing with and what our treatments were like before they continued on their way. We also saw the woman we had shared an Infusion Room with a few weeks ago. She is almost finished with her cancer treatment, and we congratulated her and wished her well. She said JJ was an inspiration to her because after she had heard how intense his treatment was and how courageously he endured it, she realized she had nothing to complain about.
The nurse came to get us and JJ got his injection and we drove home in our vomit-mobile. As soon as we got home, JJ took a shower. I went outside and sifted through the garbage bags for JJ’s gloves and favorite hoodie, but threw everything else–floor mats, blanket, and all–away in the trash. No use trying to salvage those. Then I threw the soiled clothes into the washer and got it going.
As we endured the trials of the day, I did a lot of pondering. In many ways this battle with cancer is very difficult: The long hours of chemo, the various surgeries, the unending blood tests, the many doctor appointments and exams, the mouth sores, the hair loss, the vomiting, the weariness, the humiliations of such things as entering the Cancer Center splattered with vomit…Ugh. I wouldn’t wish this awful disease on anyone.
Yet, at the same time there are special moments that a person can only experience at such difficult times as these. It’s easy, as a parent, for example, to get focused on the negatives–on the frustrating battles to get a teen to pick up after himself, speak politely, and “I don’t care how old you are, you still live in this house and you still have to do your chores!” During this time of illness, however, those irritating negatives fall away and we are reminded that he is our beloved son who is facing a tough battle with a strength and courage that we admire. We are reminded that our son is more important than the dirty socks on the floor. We are reminded that we would do anything for him.
It’s easy for a young man to get exasperated with his parents and to feel they are unreasonable and “just don’t understand!” But our son can now see our unceasing and unconditional love for him as we take him to unending medical appointments, sit with him during long hours, care for him, make him laugh to encourage him, sleep on uncomfortable furniture so we can be near if he calls out in the night, and wipe up his vomit.
It’s easy to get battered and cynical in this world when we encounter dysfunctional, selfish people. It’s easy to think no one cares. But all of that is forgotten during this battle of cancer as we become overwhelmed by an outpouring of love from so many people–from both friend and stranger.
And most of all, we are experiencing a deep, deep strength and peace from a God who loves us. HE is why we can keep going with hope. He is why we can laugh. He is.
Photo from: favim.com
Going through a serious illness with a loved one (or any suffering, really) has great benefits. It enlarges our capacity to love and show compassion and mercy. It increases our humility. It teaches us to take one moment at a time and to be more thankful for each blessing, no matter how small. It helps us appreciate each other more and draws us together. So, yes, this is very difficult. Yes, we’d rather not go through it and will be glad when it’s OVER. However, this is also a very special time of love.
Mixed Blessings
We had to be at the Cancer Center this morning at 8:30 a.m. so I got up at 6 a.m. My Chemo week mornings are busy because I have to get dressed, eat breakfast, feed the pets, let Danny out and back in, make coffee, do dishes (if I have time), make sure our bags are all packed, prepare coffee travel cups, wake the guys, fix them breakfast, find misplaced items–not necessarily in that order. (EJ also has his responsibilities, which include making sure the car is warmed up and ready to go, loading the luggage into the car, and driving us to the Cancer Center.)
I woke the guys at 6:30 a.m. It took JJ a long time to get up because he didn’t sleep well and was tired. He asked for Magic Mouthwash for mouth sores so I poured him the prescribed amount in a small medicine cup, but it made him feel nauseous so…he ended not starting to get dressed until 15 minutes before we had to leave. On Chemo mornings he also has to rub a cream on his shoulder where the port is just before we leave because it numbs the area so it’s less unpleasant when the needle is inserted into the port.
JJ was quite grumpy and negative this morning because he dreads Chemo and he has to mentally prepare himself to go. EJ and I also find ourselves more tired at the start of each cycle of Chemo because the schedule is wearying. Sometimes in my head I can hear Scotty (from Star Trek) shouting in his Scottish voice, “She canna take much mor’ of this, Cap’n!” when Captain Kirk orders the Enterprise to go at a high warp speed for too long of a time. Like the starship, we keep going because we must.
We loaded all our gear into the car and took off. JJ’s mood improved as we drove until he was again his cheerful self.
At the Cancer Center, we sat in the waiting room while JJ filled out his daily blue form, indicating on a scale of 1 to 10 how he is feeling: nauseous? tired? anxious? appetite? and so on. I looked across the room and saw an elderly couple who I thought I recognized. From the way the husband was looking at me, I thought he recognized me too. They attended the same church as I did all through my childhood and I dated their son for a bit. They were super nice. I haven’t seen them for probably 25-30 years. It took me a few minutes to work through, “Is it them? Or no? I’m sure it is! Isn’t it?” Then I decided I’d ask them if they were Mr. and Mrs C, but….”Should I go stand in front of them? Or wait to make eye contact?” Then the door open and we all were called back to the infusion rooms, and the man said, “Hi, TJ! How are you?” and we hugged.
I was anticipating chatting with this newly found couple throughout the day, but we were taken to an Injection Room to the right instead of left to the Infusion Rooms. The nurse told us that JJ is not having Chemo this week because his white blood cells are way too low. Instead, he has to come to the Cancer Center every day this week for an injection. The nurse said that she could give us a prescription if we could give the injections ourselves and we all chorused, “NO!” We definitely didn’t want to try to give JJ injections and he definitely didn’t want to receive them from us. “We will come to the Cancer Center for the injection every day, thank you very much.”
It is sort of a mixed blessing: JJ is rather happy that he doesn’t have to spend hours every day this week in his infusion chair. However, the last time he had an injection–only one–he groaned in agony for a couple of days afterwards. The injections make his body ache terribly because they force the bone marrow to produce blood cells. So although we don’t have long Chemo hours this week, it still might be a difficult week.
JJ still has to have his remaining weeks of Chemo, so the Chemo has to be rescheduled. This means that our whole Chemo experience is stretched by an additional week. Also, because JJ’s white blood cells are so very low–almost nonexistent–he can’t fight off any infection, which means we have to be even more careful to protect him from illness. He must avoid contact with people and public places. Yesterday at the grocery store we bought four bottles of an elderberry mixture which is supposed to strengthen the immune system. We can’t give it to JJ, but EJ is taking it to boost his immune system because he is the one who goes out into the world among people more than JJ and I do. He is the one most likely to bring sickness into our home.
Years ago, if there was contagious sickness in a community, people had to have large “Quarantined” signs on their doors if someone in the home was sick, and no one could enter or leave the home so germs wouldn’t be spread. I feel like posting one on our door. Or, as a friend suggested, we could install an airlock/spraydown in our entryway, which is very sci-fi. It would also be more cool–and effective because germs don’t read signs.
After the nurse gave JJ his injection, I showed her a picture of JJ with his funky orange hat that I had taken with my phone. She laughed so hard she practically rolled on the floor. “He looks like a clown,” she gasped. Another nurse heard the laughter and came into the room to see what was up. I’m sure they must not hear that sort of laughter very often at the Cancer Center. I showed her JJ’s picture and she laughed too. I was glad we could spread a little joy. EJ’s co-worker offered to make JJ more hats if he wanted, and on the way home we talked about how much fun it would be to have her make a purple hat or a blue hat….JJ said that the hats actually resembles the feel of hair, so it gives him the sensation that he still has hair, which is comforting. EJ and I said that the hat also looks sort of as if he has hair, so even though it is very orange he looks more like our son than he does with his bald head. So we love the hat.
On the way home, JJ asked if I’d make him an egg burrito so when we got home, I got out the iron fry pan. I diced up and sautéed all-beef bologna, onions, bell peppers and about 7-8 frozen tater tots. The tater tots give the mixture an extra flavor. I beat eggs, poured them into the fry pan, and scrambled everything together. I heated up flour tortillas and scooped the scrambled eggs into the tortillas. EJ and JJ love them (so do I) and say I make the best egg burrito ever. With positive reenforcement like that, I just might keep making them. 🙂
With their bellies full, my guys took naps.
Cycle 3 Preparation
Yesterday we spent the day mostly resting. I say “mostly resting” because I did go to the bank because I had forgotten to get cash earlier. I hate to do business on Saturdays, but we need money for gas and food during this week of Chemo and we won’t be able to get to the bank with our busy Chemo schedule. I had a nice talk with LM at the bank. She asked about JJ and we talked about God giving us strength to deal with all this. She said that she thinks I am a very good writer and that my blog is an encouragement to families battling cancer. That was nice. It was a spirit-lifter to talk with her.
Today was our day to prepare for another week of intense Chemo. We have to get everything done that we need to do because we don’t have much time to run errands during the week of Chemo. So EJ and I went to the grocery store for a few things: We bought the juices JJ enjoys during Chemo, shampoo, pet food, and several other things. We also bought bird seed and a bird feeder. Those weren’t exactly necessities, other than that the birds lift our spirits, but there were major sales today so we got most of our purchases at reduced prices.
Next, we drove to the meat market. After an experience with an unsanitary meat market, we did research and selected this market because they raise their own beef, are very clean, and have won many awards. We bought 20 lbs of ground beef and some all- beef bologna which is very tasty.
After that, we drove to GFS Marketplace for some disposable cups and lids. We have found it’s very handy to use these cups during Chemo so that we can just throw them away rather than worry about washing lots of glasses when we are all tired.
It was very windy today. The wind blew and swirled the snow across the fields and into the roads. It was very beautiful although drifts were beginning to creep across the roads and that could be tricky later. At one point, we saw a squirrel straining to run across the road, but the wind was preventing his progress so that he was pretty much at a standstill. I had never seen such a thing before. We would have hit it except EJ slowed almost to a stop and the squirrel found the motivation and strength to finally overcome the wind and he made it across the road safely.
When we got home, EJ and I brought in the groceries. EJ put the leftover chili on the stove to heat, while I put groceries away. EJ ate and then he went to visit his family. His Mom is living with a sister and her family and he hasn’t seen them for a while. EJ has been so busy driving us places and then going to work that I encouraged him to go if he wanted to and wasn’t too tired. Sometimes it helps for a caregiver to get away. I didn’t go because I had too many preparations I wanted to make, and I didn’t want JJ to be home alone all day.
After EJ left, I poured birdseed into empty kitty litter buckets. I put all our pet food in emptied kitty litter buckets or the cats scratch the bags and tear holes in them. Not good. After I filled the buckets, I filled the new birdfeeder with seed and refilled the others and hung them on the feeder hook outside our large living room window. We are SO enjoying watching the birds. EJ says I have a “bird-feeding ministry.” LOL.
Then, since I had my coat and boots on, I refilled the outside cats’ food and water dish, I brought in the day’s supply of firewood, I took out the trash, and I scooped out the clumps from the litter boxes, which are on our unheated back porch. We have a pet door into the kitchen for them to use to get into the rest of the house.
Then I took off my coat and hat and mittens and boots and went to the kitchen. I divided the ground beef we had bought at the meat market into sandwich bags and put them into a heavier freezer bag and took them to the freezer in the basement. Each sandwich bag provides enough ground beef for a meal.
Then I started a load of laundry. I want to get as caught up on laundry as I can going into Cycle 3.
I made three pizzas–one large and two smaller. I really like this new pizza dough recipe I have found. The pizzas are very yummy. I layered the pizzas with sauce, cheese, hamburger and cut up all-beef bologna, onions, bell peppers, mushrooms, and green and black olives. Then I put more cheese on top. Yum. We all agree it is the best homemade pizza EVER. We demolished the big pizza, but we have the two smaller ones for leftovers tomorrow.
I washed the dishes. Swept the floors. Did more laundry. I probably did a few more things that I can’t remember right now.
I talked to a dear friend on the phone. I also had an utterly enjoyable philosophical, spiritual discussion with another friend. I truly enjoy such discussions with friends in which we discuss and debate topics of faith. With such friends, we are able to explore Scripture, ask questions, and challenge each other without worrying about saying the “wrong” thing. These discussions always feel like feasting to me.
I am tired after my busy day–almost too tired to think–but I think I’m mostly prepared for our very busy week. Tomorrow we have to be at the Cancer Center at 8:30 a.m. EST for a 6 hour day of Chemo.
“Damage My Calm”
Usually EJ gets out of work at 10:30 p.m., but last night he worked until 3:30 a.m. By the time he got to bed it was about 5 a.m. He was exhausted by his long day, but he only was able to get 4 hours of sleep before he had to get up to take JJ (and me) to the lab for his bloodwork. JJ had to get both the weekly and the monthly tests, so they took four vials of blood from him instead of two.
When I tattled to the oncologist about JJ’s most recent health issue, the doctor gave us a simple home remedy to try. He must have had second thoughts because before we left for the lab this morning, we got a call from the office of a specialist who said that our oncologist wanted JJ to set up an appointment with him within 1 to 5 days. Yeah, right, Monday JJ begins his intensive week of Chemo for five hours every day…just when are we supposed to fit in an appointment? When I told the nurse that JJ had Chemo all next week, she asked “Could he make an appointment one afternoon after he is finished with Chemo?” You’ve got to be kidding, right? JJ is expected to endure five hours of Chemo, and then go get examined by another doctor when he’s fighting fatigue and nausea. JJ’s face got panicky and stormy and he whispered to me, “I am NOT making any appointments next week! I am NOT!” In a sweet voice with a Mama Bear growl just under the surface, I told the nurse on the phone, “It is not possible for JJ to schedule an appointment next week…” and the best we could do was make an appointment for the morning of January 20–about two weeks after the oncologist wanted him to go to the specialist. As EJ drove us to the lab, I called our oncologist’s office and left a message with the nurse informing her that JJ couldn’t make an appointment with the specialist in the time frame the doctor wanted. I can understand the oncologist is concerned how JJ’s new health problem will affect him during Chemo, but we have only so much time and energy in a day. We just can’t add another thing to next week. I haven’t heard back from the oncologist nurse yet.
Our family loves well-written movies and TV programs, and we are always quoting from them. During each week of intense Chemo, I have been buying JJ shirts with our favorite movie/TV program quotes on them. I drool over the cool shirts I am buying JJ, and if JJ ever stops wearing them, I am seriously tempted to steal them from him. The last shirt I got for him was from a favorite program from the early 2000 called “Firefly.” As we drove to the lab, JJ said, “I should have worn my ‘You are beginning to Damage My Calm’ shirt because my calm is seriously getting damaged.”
TR, another patient of our oncologist who has the same cancer as JJ, warned JJ that during each cycle of Chemo he will feel worse and take longer to recover. I think that even if JJ doesn’t get physically sicker at each cycle, he is definitely getting more emotionally and psychologically fatigued–more tired having health problems, and more tired of medical procedures, and more tired of medications. Poor guy.
And, of course, EJ and I are tired as well. We are mostly doing well, and our spirits are mostly really good, but we all are definitely aware that this is a marathon we are in, not a sprint.
Yesterday I was tired from no sleep the night before, but I forced myself to make chili for today because I knew that I probably wouldn’t have time to make anything when we got home from the lab. It was nice to be able to just warm up the chili today for lunch.
Shortly afterwards, EJ had to leave for work–after only four hours of sleep. Poor guy.
Our friends bought us another gift certificate for Chubby’s Cafe, so I ordered takeout for supper and then walked down to get it. JJ is never sure what he will be able to eat during his week of Chemo, so he enjoys eating favorite meals on his “off” weeks.
On a lighter note, EJ told me that when his co-worker makes hats, she always chooses the softest type of yarn she can find. And she always runs her hands through the skeins of soft yarn to find the softest of the softest yarn. JJ’s orange hat is extremely soft and comfortable on his head, so he wears the hat constantly during the day. I am getting used to looking over at an adorable bright orange-headed son. I can’t help but compare him to the old Raggedy Andy dolls (I had one as a child–my sister had Raggedy Anne) or a cartoon character in Japanese Anime. I just have to smile.
Tomorrow is Shabbat. We are going to REST tomorrow as we prepare for another busy week of Chemo.
Tattle Tale Mom
Last night EJ brought home a fun hat that one of his work friends had made for JJ. It was bright orange, funky, and very soft so it feels good on his head. It made him look like he had orange hair. JJ loves it.
For some reason I couldn’t sleep last night. I wasn’t anxious or anything, I just couldn’t sleep. I hate when sleepless hour follows sleepless hour. But I functioned ok today.
We drove to the Cancer Center today for JJ’s appointment with his oncologist. JJ has a weekly blood test but apparently we were supposed to also have a monthly test as well. The lab didn’t do it, and we handed over the forms we were given without realizing that one was weekly and one monthly. It’s the monthly tests which checked the cancer markers in JJ’s blood. He will have the weekly and monthly tests done tomorrow, but we didn’t have the results today.
I’m sort of a tattle-tale Mom. If JJ doesn’t tell the medical staff about health issues he is struggling with then I tell them–no matter how minor they seem because do not really know if a minor issue is really a major one. Sometimes JJ is not particularly happy with me after I’ve tattled on him. Today JJ wasn’t going to tell the nurse or doctor about an issue he is having. He just kept saying it wasn’t really a big deal and it was getting better. However, I strongly suspected that he said that only because he didn’t want to be examined. So I tattled on him and the doctor took it seriously and examined him, and now JJ has yet another thing he has to do at home to prevent bacteria from entering a sore. JJ did tell me afterwards that although I sometimes exasperate him when I tattle on him, he does think I am right to do so. Duh. Of course I am right. He should listen to me more often.
The doctor wanted JJ to have a Pulmonary Function Test before he starts his next cycle of Chemo to make sure his lungs are ok because Chemo can affect his lungs and breathing. Pulmonary Function Tests are a group of tests that measure how well the lungs take in and release air and how well they move gases such as oxygen from the atmosphere into the body’s circulation. The doctor scheduled the test for 11:30 a.m. today, which meant we had an hour to wait, so we decided to go to the hospital cafeteria to eat while we waited. We had just entered the cafeteria when I got a call from the department that does the PFTs, and we were told that they could get JJ in immediately. So we went to the patient registration desk instead of the cafeteria.
Only one of us could go with JJ. Since EJ had gone with JJ for is last PFT, I went with him this time. I began to think it was a mistake for me to go when the woman who did the test led us down a hall, on an elevator, down another hall, to the room where the test was done. I am severely directionally challenged, which means I can get lost anywhere, so I was concerned that I wouldn’t be able to find my way back to the lobby. I was concerned even though, after the test, the woman gave me directions on how to get to the lobby. I was very thankful when a hospital employee entering an elevator as we walked past asked us if we were going to the main floor. We said yes, so she invited us to share her elevator, and then she pointed us down the right hall. She was truly an angel.
But back to the test: JJ had to sit in a glass chamber, which I thought looked like something from a science fiction move–like a stasis chamber or something. Adding to the sci-fi look, JJ happened to be wearing his Star Trek shirt today.
In the chamber, JJ had to breathe into a tube several times, sometimes holding his breath for long seconds. The test took about 10 minutes. Then we found our way back to EJ.
All of our shoes are wearing out so last night I did some research on the location of shoe stores in the city and their products. After we left the hospital, EJ drove us to the shoe store I had selected, and we all tried on shoes until we found the ones we liked best. We each got a pair of shoes, and EJ got two pairs because his shoes were part of a “Buy One, Get Second Pair Half Off” sale.
Finally we got home, ate a quickly lunch, and then EJ had to rush off to work. I will do a few chores and then I WANT TO TAKE A NAP! If I can, that is.
Magic Mouthwash
Last night EJ thought he might be getting sick, but this morning he said he was feeling pretty good. He thinks maybe he is just tired and rundown. With JJ’s immune system so low, I do not know how he could keep from getting sick or what affect even a cold would have on him, so I hope we all can keep healthy.
EJ had his appointment with the eye doctor this morning. He decided to “shop local” and try a local ophthalmologist rather than go to the eye doctor at Walmart. EJ said that the doctor was skilled and the staff very nice, but he was shocked when he saw the cost of the visit (appointment plus new glasses). It was several hundred dollars more than at Walmart. YIKES! We won’t be going there again any time soon because, frankly, we can’t afford it.
The ophthalmologist had put eye drops in EJ’s eyes so EJ had trouble seeing afterwards. He was so focused on driving safely with blurry vision that he forgot to stop at the Pharmacy to pick up the prescriptions. I thought it was important to get JJ started on the Magic Mouthwash right away. There have been enough delays already in getting it, and open mouth sores can let in infections that JJ might not be able to fight off. So I asked EJ to cook lunch (he’s an excellent cook) while I drove to the Pharmacy for the meds. I am thankful that I now have enough anti-nausea meds and that there is no danger that I will run out of them during the Third Cycle of Chemo.
I poured JJ the prescribed amount of Magic Mouthwash in a small medicine cup, but he resisted taking it. I suspect that even if the remaining cycles of Chemo aren’t as bad as he fears, they will still be harder because he is getting increasingly weary of pokes, prods, pills, and other kinds of meds and procedures. He is tired of health problems and feeling sick. I talked him into taking the mouthwash by asking him to drink it since I already had it poured. He grumpily took it, and “swished and swallowed” as instructed.
In fascination I watched his various contorted facial expressions as he drank the Magic Mouthwash, and I couldn’t help but smile. He smiled when he looked up and saw me. “Ugh, this makes my tongue numb!” “So are you going to start talking like Jar Jar Binks in The Phantom Menace when his tongue was numbed by the podracer???” I asked hopefully. “No, No, stop it, Mom,” he said, almost but not quite smiling.
“I hate this, Mom,” he sighed a few seconds later. I replied, “I know….but at least the liquid is easier to swallow than the huge pill.” He said, “The mouthwash is NOT a replacement for the antibiotic.” I replied, “I know, but the mouthwash will prevent and treat the mouth sores so that you don’t get an infection from them and have to take the huge antibiotic pills.”
A few seconds later I said thoughtfully, “You know, they call it Magic Mouthwash, which sounds really awesome. I mean, who wouldn’t want to drink Magic Mouthwash?” Who knows? It could turn a person beautiful, or tiny or tall, or able to see hidden things, or take them to a different realm, or anything. The possibilities are endless. “But what they don’t tell you,” I continued, “is that it’s actually a witch’s magic potion that numbs your tongue and….” “No, No, stop it, Mom!” Sigh. No one appreciates my imaginative and fun fairytale theories.
Tomorrow morning we have an appointment with the oncologist. I always feel a mixture of hope and fear before we meet with doctors. Our previous appointment with the oncologist was MUCH better than we had imagined, but all the visits with doctors before then had been worse than we imagined. So we go to these appointments hoping for the best, but preparing for the worst.
I have had a few friends call me “strong” or “courageous” through this battle with cancer, which, I confess, amazes me. Really, I feel quite clueless and inept about handling all this and I am mostly learning as I go along.
I have found that the hardest parts of all this is when we first hear bad news. Bad news are a painful and numbing shock and take a while to absorb, process, and accept. These are the times when we have fears and tears. I also feel stabs of fear when I hear of a person losing his battle with cancer, especially if it’s the same sort of cancer as my JJ. However, we can’t live in those future “what ifs”–we have to push them away. We handle the day-to-day challenges–the treatments, the side affects, the struggles with swallowing medications, the weariness, the occasional low spirits–one step, one moment at a time. It’s not that bad. Most of the time we have hope and good spirits.
We find our strength primarily through our faith in God, of course. We also gain strength through the prayers, love, and kindnesss of our friends, who are INCREDIBLE. And we find strength in our ability to find humor in difficult situations.
A Bit Low
I slept on the loveseat last night because JJ hadn’t felt well, and I wanted to be available if he needed me (he didn’t). The loveseat is too short to be entirely comfortable, but I do enjoy the cuddling of the cats. During the night, Luke slept in my arms at my side, Little Bear slept on my chest, and Kee-Kee slept on my shoulder/neck. I was comforted by a comforter of cats. 🙂
I called the pharmacy this morning to get refills for JJ’s anti-nausea meds (See? I do eventually learn!) and to refill one of EJ’s meds. I didn’t talk to a human, I talked to a computer, who told me to read the numbers on the bottles. The computer told me that the earliest I could pick up the prescription was after 2:30 p.m.–AFTER EJ left for work. It never makes sense to me that if I call ahead, it takes them hours to refill a prescription, but if I physically go to the store, the prescription is usually filled within a half-hour. I think I will not again call in prescriptions.
I had called ahead on the refills so I wouldn’t have to carry all those bottles of meds with me but I still had the written prescription for JJ’s Magic Mouthwash to get filled. I drove the ten miles to the pharmacy grumbling with irritation because I wouldn’t be able to get all the prescriptions at the same time and would have to make another trip. Then the lady at the pharmacy told me that the mouthwash would require several hours to fill because it was a combination of meds. So…I just returned the ginger ale bottles and then left the store. We will pick up ALL the meds tomorrow.
While I went to the pharmacy, EJ stayed home and filled out forms in preparation for his eye appointment tomorrow.
After EJ left for work, I brought in firewood and did other chores. It took me a long time to get them done because I kept getting distracted by various things.
The nurse called me back about the health issues JJ is having. The doctor will examine him during his appointment on Thursday. JJ was a little upset that I told the nurse about his problems because he is SO TIRED of health problems and being poked and prodded and given pills, but I told him that we have to tell the nurses everything because we don’t know if something that seems minor is actually major. For example, the nurses always have the doctor or his assistant examine JJ if he mentions mouth sores or sores on his hands–no matter how small–because skin in the body’s first defense against infections and must be dealt with. JJ understands all this, but he still doesn’t like it and his spirits were a bit low.
JJ is really dreading the beginning of Cycle 3 next week because TR, the guy with the same cancer whom the doctor connected JJ with, told JJ that each cycle is worse than the one before. TR said he will feel worse and recovery time will be longer. Sometimes knowing what to expect ahead of time can help a person prepare himself, but other times it just causes increased anxiety. In this case, I think it would have been better if JJ hadn’t been told quite so much.
Tonight JJ was really hungry for a roast beef wrap from his favorite local diner. Usually when he wants Chubby Cafe food, I call in the takeout order and then walk down to get it. However, tonight it was dark when JJ asked for Chubby’s food and I just didn’t want to go out in the night. So when I called to order the food, I asked them to deliver it. I didn’t order anything for me and I totally forgot that there is a $7 minimum order for delivery. The owner said I didn’t have to order more because, for us, the minimum order wasn’t an issue. They care so much for JJ that they do extra for us. It always amazes JJ (and us) when people are so caring. However, I insisted on ordering a cheeseburger for myself to bring up the total because I didn’t want them to take the time and effort to deliver the food for such a small order. Besides, I think their cheeseburgers are tasty.
EJ texted me from work that he thinks he might be getting sick. This should make our interesting lives even more interesting and challenging.
Checking In
I wasn’t going to write today, but thought I better check in or people might worry about us.
We were busy resting Saturday.
On Sunday we went grocery shopping. EJ had trouble in the store because a lot of people were wearing perfume, which he is allergic to. Perfumes make him feel sick and steal away his breathe. People don’t really think of the affects perfumes can have on people who struggle with them.
Today JJ had a 90 minute Chemo session. As always, the nurse asks him if there was any changes in his health. He mentioned the sores on his hands and in his mouth. The sores on his hands weren’t that bad, and the nurse encouraged JJ to apply lotion to them. The skin is the first defense against infcction so it’s careful to take care not to develop sores. The nurse had the physician’s assistant examine JJ’s mouth sores. The PA prescribed a special mouth wash called “Magic Mouth Wash,” which I think is a cool name. We didn’t have time to stop to get it filled because EJ had to rush to work. We will do it tomorrow AND I will get JJ’s anti-nausea meds refilled so I have enough to get through Cycle 3.
This evening has been tough for JJ. He had a few health issues, including vomiting his guts out. I left a message with the doctor’s nurse to ask about the other problems. Poor JJ said he is very, very tired of health problems.
Poor guy.
Two by Two, Hands of Blue
This morning we had to drive to the city so JJ could have his weekly lab work done. We drive this route so often now that if our car were a milk-wagon horse, it would have the route memorized.
The temperatures have warmed up dramatically. It is currently 34 degrees, which is an increase of 50 degrees from a couple days ago. Because it warmed up so fast, it was an extremely foggy morning. I love foggy days because they wrap the world in mystery. Plus, I remember reading a book when I was a child in which a girl could travel back in time on foggy days to an old village. I always suspect that going back in time is possible on foggy days.
Usually, unless we get a very early start, the lab is very busy, and I expected it to be busy this morning. However, JJ didn’t have time to take a number and we didn’t have time to sit down before we were called back to the room for JJ’s blood draw.
I do not ever watch scary movies about vampires or anything. I don’t mind scary thrillers but dislike scary, gory, monstery horror stories. However, it has long been my theory that if vampires existed in modern times, they would surely work as lab technicians. I cannot think of a better place for a vampire to work than at a lab taking people’s blood. Who’d suspect? JJ always laughed at me when I grumbled about the stinkin’ vampires taking another vial of my blood for a midnight snack. So imagine my smugness when I walked into the blood-draw room and saw the following sign. I exclaimed, “Look! Look! I told you that vampires worked as lab technicians! I am VINDICATED!” and I took a photo as proof. The photograph turned out a little blurry–probably due to the nearness of the vampire technician.
We were in and out of the lab in an instant so we had enough time to go to the Verizon store. The store was so busy that when we entered we were greeted by a woman who input our name into her tablet-type device. I guess that was a digital version of “taking a number”? While we waited to be served, we looked at all the phones available. We didn’t want to buy expensive phones, so we just “upgraded” to the cheapest 99 cent phones you get when you sign up for another two-year plan. All that was available were phones that were almost identical to what we had before–so JJ and I got dumb phones with slideout keypads while EJ got a dumber phone with just the basics. Still, there are some differences between our old phones and the new ones, and I spent the drive home setting my phone up the way I like it.
I didn’t have time to fix anything for lunch before EJ had to leave for work so on the way home I called ahead to Chubby’s Cafe, our little local diner, and ordered takeout. It was done by the time we arrived at the restaurant and I went in and picked it up.
Perhaps accidentally washing JJ’s phone started me thinking about the measures we have to take to wash JJ’s clothes while he’s on Chemo, which caused me to think of “Two by Two, Hands of Blue.” Let me explain…No, there is too much. Let me sum up.
We three love good writing and witty dialogue in books and movies, and we are all the time quoting from them, which adds a whole different dimension to our conversations. Some programs/movies are filled to the brim with awesome quotes–like Princess Bride, Firefly, and Doctor Who. Sometimes I just have too much fun with quotes. For example, years ago, after we saw the movie, The Emperor’s New Groove, I bought JJ a goblet at a secondhand store. Whenever he was sick, I’d put warm water into the goblet and then I’d drop in a tablet, such as Airbourne, that bubbled and fizzed. I’d carried the goblet of bubbling mixture–such a cool effect–to my son and chortle evilly as he took it from me, “Drink, my pretty. Drink!” After he had drunk it, I’d look at him intently and exclaim in horror, “A LLAMA???! You are supposed to be DEAD!”
When I learned that I had to be careful about handling JJ’s clothes while he was on Chemo, I purposely bought blue medical gloves because in Firefly, one of our most favorite science fiction series, two very scary evil characters wore blue medical gloves. So every time I prepare to do JJ’s laundry, I dramatically put on the blue gloves and quote scarily, “Two by Two, Hands of Blue…” JJ always says, “No, no! Stop it, Mom!) and he gives me “THE LOOK” that says, “You are so weird, Mom.”
I have probably warped my son for ever, but I have fun. At a young age, I figure out that if you have to do something unpleasant, you might as well try to make it as fun as you can. Even if it involves drinking medicine or going through Chemo.
Oh, fun fact: Before he starred in Castle, Nathan Fillion starred in Firefly, which was his favorite show. The cast became close friends and used to hang out in the space ship “Serenity” when they weren’t filming. Several of the Firefly cast members have appeared in Castle. There are often references to Firefly in Castle, including a scene in which Rick Castle looks startled when he puts on blue gloves. Castle can be enjoyed on two levels–those who love Firefly enjoy the show on a whole different level from those who are unaware of the references.
I learned another fun fact today. JJ received another email from Xenia, the awesome Michigan Search and Rescue dog. In the email, Xenia said that she is the granddaughter of the bloodhound in the movie, O Brother, Where Art Thou? That is one of EJ’s favorite movies. He likes the old-timey singing. I thought that was very cool.
Here are some pictures I took today on our trek to the lab. I love how the changing weather changes the scenes.
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.
I Love To Go A Gardening 