Ten more chemoradiation treatments to go for my love. If they are anything like the last eighteen, he is in for two more weeks of exhaustion and nausea, watching _The Love Boat_ and _Miami Vice_ in his recliner because he cannot do anything else. Two more weeks of sleeping and more sleeping; two more weeks of a queasy stomach and Cream of Wheat. Trevor has been really compliant and uncomplaining, and I'm incredibly proud of how well he is handling everything.
Sometimes I'm not certain the rest of us are doing so hot. Although the kids are still fairly unaware of all of the details or just how serious this cancer is, they're both agitated and jittery. Lottie has become even more worried about things than she normally is and full of "what if" questions. Dallas is oddly more high-energy than normal, but it's edged with slight anger and irritability. I spend a lot of time reassuring them that we'll all get through this and Trevor will be okay, but time is very elastic to little kids. The thought that all of this will continue on into 2015 is more than they can understand, more than they can handle. They want to know when Dad will be better, what day, what hour. I can't give them those exact answers, and it makes me feel helpless, inefficient, and just completely worthless. I struggle with keeping things normal in a really abnormal situation. There still has to be routine and discipline, but how much is too much? When is enough enough?
I spend the daylight hours trying to make Trevor as comfortable as possible and trying to continue with everyday life for the kids. At night when everyone else is asleep, I have time to slow down and take a quick look inside myself. Most of the days, I don't see a lot but a tired mom who has done a decent job of keeping all the balls in the air that day. But every once in a while, I see a caricature of a pouty child who has a "why me" speech bubble coming out of her mouth. I want to be in one of the happy family pictures I see on Facebook of people at the beach, playing in the waves, smiling with ice cream cones. I'm not jealous of their good fortune; I really enjoy seeing how different people are spending the summer. It's not the actual traveling I miss but rather the idea of a carefree time of togetherness. Sometimes I do wonder why it had to happen to Trevor. What did he do, what did we do as a family, to deserve to have to deal with this all?
Logically, I know it's all random chance and happenstance: Our family wasn't chosen specifically. We're not being punished or singled out. This is just some rotten stuff that is happening in the now. It won't last forever, even though sometimes it seems like it will never end, and it WILL get better. We are lucky to have family and friends who do so much for all of us, and it's frustrating to me that I'm not in the position at the moment to give a lot back. I yearn to rediscover my own availability to others and to find one single moment when cancer isn't floating just above each thought I have. I want to stop living in the world of When This Is Over. It'll be a lengthy journey, but I'll have to keep moving forward until I can find all that I seek.
Sunday, July 27, 2014
Thursday, July 17, 2014
The wheels on the bus
Things continue to go round and round chez Wells. Luckily, Trevor seems to be feeling better this week. Mind you, he's not dancing a jig when he wakes up in the morning, but he's not lying on the bathroom floor, either. Any progress is a win. Today is his twelfth treatment, so it's great to have him in double-digits. The fatigue still continues to overwhelm him, and he spends a lot of time resting.
There have been a lot of difficult things about T's cancer and treatment. I think I have felt every emotion known to man every day since the diagnosis. Living on such a fragile roller coaster is exhausting for all of us. The enormity of it all tends to make the little things seem even bigger than they are, and that can put everyone on edge. Well, it mostly puts me on edge. I'm used to taking care of everyone and everything, and when I can't do that, I feel helpless. I'm currently keeping all of the plates spinning, but I know my own is starting to wobble. I am not feeling my best, I'm snappish, and I'm not sleeping well. As selfish as it sounds, I have been neglecting myself and that's not helping anyone. You know the whole thing about how adults are supposed to put on their own oxygen masks in case of emergency then help children? My mask is lying on the floor in a battered heap. I need to do a better job of taking care of myself so I can resume taking care of everyone else.
I know that the kids have sensed the tension flitting around the house even though both T and I do our best not to let anything show. L & D have been whinier than usual and there have been more tears than normal. It's a really difficult line upon which we teeter, the line between telling the kids the truth and keeping them protected from what they just don't need to know. They know T is sick and has to have treatments every day. They know that cancer is a serious issue and that he can't do as much as they would like him to do. Although they KNOW all these things, they truly have no idea what's going on. I don't want them to have full understanding because they're too young to handle that responsibility. (I'm an adult, and I'm not certain *I* am handling the responsibility all that well.)
I find myself speaking on eggshells, as it were, because I don't want to reveal too much to the kids. L started a little fund in a glass jar for our next trip to Disney. We had a trip planned for December, but considering T will be recovering from surgery and going through the second round of chemo we know the trip won't be happening. It's heartbreaking to see L count the money in the jar, but I know it would be too much to tell her that we even had a vacation planned in the first place. (To be fair, I can't quite seem to hit the 'cancel' button yet, so it's technically a to-be-cancelled trip.) Dallas still seems blissfully unaware of what is happening but he is definitely feeling it all, too. He has been angrier than usual, melting down over things that normally wouldn't bother him and sleeping on our floor almost every night It is pretty amazing to see how much kids can really sense even when they can't quite put a finger on what everyone else is feeling. Kids can be wicked perceptive...until it's bedtime and parents desperately want some time alone. Then that incredible perception goes right down the drain. I'm trying to keep life as normal as possible, but frankly, none of this is normal.
This whole situation is still a work in progress, and we're all learning how to deal. I'm thankful that T and I are still making each other laugh even when we probably want to cry. This is all new territory for all of us, but at least we have each other.
Just as an added bonus, here's a picture of Lottie and my niece Kate in Lafayette.
There have been a lot of difficult things about T's cancer and treatment. I think I have felt every emotion known to man every day since the diagnosis. Living on such a fragile roller coaster is exhausting for all of us. The enormity of it all tends to make the little things seem even bigger than they are, and that can put everyone on edge. Well, it mostly puts me on edge. I'm used to taking care of everyone and everything, and when I can't do that, I feel helpless. I'm currently keeping all of the plates spinning, but I know my own is starting to wobble. I am not feeling my best, I'm snappish, and I'm not sleeping well. As selfish as it sounds, I have been neglecting myself and that's not helping anyone. You know the whole thing about how adults are supposed to put on their own oxygen masks in case of emergency then help children? My mask is lying on the floor in a battered heap. I need to do a better job of taking care of myself so I can resume taking care of everyone else.
I know that the kids have sensed the tension flitting around the house even though both T and I do our best not to let anything show. L & D have been whinier than usual and there have been more tears than normal. It's a really difficult line upon which we teeter, the line between telling the kids the truth and keeping them protected from what they just don't need to know. They know T is sick and has to have treatments every day. They know that cancer is a serious issue and that he can't do as much as they would like him to do. Although they KNOW all these things, they truly have no idea what's going on. I don't want them to have full understanding because they're too young to handle that responsibility. (I'm an adult, and I'm not certain *I* am handling the responsibility all that well.)
I find myself speaking on eggshells, as it were, because I don't want to reveal too much to the kids. L started a little fund in a glass jar for our next trip to Disney. We had a trip planned for December, but considering T will be recovering from surgery and going through the second round of chemo we know the trip won't be happening. It's heartbreaking to see L count the money in the jar, but I know it would be too much to tell her that we even had a vacation planned in the first place. (To be fair, I can't quite seem to hit the 'cancel' button yet, so it's technically a to-be-cancelled trip.) Dallas still seems blissfully unaware of what is happening but he is definitely feeling it all, too. He has been angrier than usual, melting down over things that normally wouldn't bother him and sleeping on our floor almost every night It is pretty amazing to see how much kids can really sense even when they can't quite put a finger on what everyone else is feeling. Kids can be wicked perceptive...until it's bedtime and parents desperately want some time alone. Then that incredible perception goes right down the drain. I'm trying to keep life as normal as possible, but frankly, none of this is normal.
This whole situation is still a work in progress, and we're all learning how to deal. I'm thankful that T and I are still making each other laugh even when we probably want to cry. This is all new territory for all of us, but at least we have each other.
Just as an added bonus, here's a picture of Lottie and my niece Kate in Lafayette.
Sunday, July 6, 2014
There's no crying in (beach)ball
What a week.
To begin with, the kids' schedules were completely thrown off because of the holiday. All of their normal summer activities were put on hold for the entire week. We had nothing planned for a week. Some of you are probably thinking that it sounds like a great summer week full of spontaneous joy. You would be wrong. Simply wrong. Oh, we had some fun, but we also had way too much time together.
The kids had been begging me to take them to the beach, so off to the beach we went. The first fifteen minutes were fantastic like the scene from a movie where kids frolic and giggle with utter abandon. At minute sixteen, everything fell apart. The black flies started swarming and we all ended up with welts all over our bodies. Staying in the water helped the fly situation, thankfully, but then there was the Great Beach Ball Incident of 2014. You see, during the last few weeks of the school year, Lottie won a prize package for something at school, and one of the things was an FLE beach ball. She was terribly excited to play with the beach ball at the actual beach, and both kids had fun watching the ball bob on the waves. (You know where this is going, right?) At one point, the wind blew the ball into the water before anyone could grab it, and it started to float away. I heard Dallas yell, and I took off after the ball. Lake Michigan isn't exactly warm, and I was a bit worried about hypothermia as I chased a plastic ball deeper into the water. After a few minutes, I realized I was never going to catch up to it, and I trudged back to the shore. Imagine my shock when I found both kids crying - SOBBING - because the 99 cent piece of plastic was floating off into the great beyond. I was so shocked at their reaction that I started to laugh, and that was not well received. They cried harder and threw themselves on to the sand. I promised them a new beach ball, but they didn't want a new one. Lottie felt especially sentimental about that particular beach ball, and Dallas felt guilty that Lottie's special prize had been lost. I tried telling them that the beach ball would have a great adventure out on the lake and maybe even be picked up by a passing ship. Both kids looked at me like I was an escaped mental patient and continued to cry. Just like that, the day at the beach was over. We packed up our things and drove home. I managed to keep up a happy, positive chatter on the way back to our house, but I noticed as I pulled into the driveway that the kids were still crying. Incredulous, I said, "Seriously? Is this still about the ball?" Wrong question, Mom. Because yes, it was still about the "you-know-what" that apparently we weren't allowed to discuss anymore. That darn ball is like the Voldemort of our summer break.
The rest of the week wasn't much better. We saw a movie, played with friends, and hung out together. A lot. A lot of time together. The kids played, the kids fought, the kids played, the kids fought, and then the kids fought some more. In the meantime, T started his chemoradiation at Northwestern. He is already feeling fatigued and nauseous from the treatments, and he's only three sessions in. He started taking the anti-nausea medication prescribed to him by one of his doctors. Unfortunately, he had a terrible reaction to that particular medication, and it ended up being more of a regurgitant than anything else. He spent the entire Fourth of July vomiting and having chest and back pains. He was out of it, I was terrified, and the kids could only think about fireworks. 'Merica. He talked to a doctor at NMH on Saturday, and she prescribed a new med for him to try. Fingers crossed that this one won't make the chemo seem like a walk in the park.
Thank goodness this week brings a return to some semblance of schedule for the kids and for me. I think a little routine makes everyone feel a bit more secure. The kids will be back to summer camp, ballet, and tae kwan do while T will start his first full week of treatments. I'll be attempting to keep all the balls in the air at any given time. Once again, I am grateful for my family and friends who have done so much for all of us. I hope someday to be able to repay all of you individually for your kindness, concern, and help, but for now, please know how much we appreciate your love and support.
Our eyes are on the prize, always on the prize.
To begin with, the kids' schedules were completely thrown off because of the holiday. All of their normal summer activities were put on hold for the entire week. We had nothing planned for a week. Some of you are probably thinking that it sounds like a great summer week full of spontaneous joy. You would be wrong. Simply wrong. Oh, we had some fun, but we also had way too much time together.
The kids had been begging me to take them to the beach, so off to the beach we went. The first fifteen minutes were fantastic like the scene from a movie where kids frolic and giggle with utter abandon. At minute sixteen, everything fell apart. The black flies started swarming and we all ended up with welts all over our bodies. Staying in the water helped the fly situation, thankfully, but then there was the Great Beach Ball Incident of 2014. You see, during the last few weeks of the school year, Lottie won a prize package for something at school, and one of the things was an FLE beach ball. She was terribly excited to play with the beach ball at the actual beach, and both kids had fun watching the ball bob on the waves. (You know where this is going, right?) At one point, the wind blew the ball into the water before anyone could grab it, and it started to float away. I heard Dallas yell, and I took off after the ball. Lake Michigan isn't exactly warm, and I was a bit worried about hypothermia as I chased a plastic ball deeper into the water. After a few minutes, I realized I was never going to catch up to it, and I trudged back to the shore. Imagine my shock when I found both kids crying - SOBBING - because the 99 cent piece of plastic was floating off into the great beyond. I was so shocked at their reaction that I started to laugh, and that was not well received. They cried harder and threw themselves on to the sand. I promised them a new beach ball, but they didn't want a new one. Lottie felt especially sentimental about that particular beach ball, and Dallas felt guilty that Lottie's special prize had been lost. I tried telling them that the beach ball would have a great adventure out on the lake and maybe even be picked up by a passing ship. Both kids looked at me like I was an escaped mental patient and continued to cry. Just like that, the day at the beach was over. We packed up our things and drove home. I managed to keep up a happy, positive chatter on the way back to our house, but I noticed as I pulled into the driveway that the kids were still crying. Incredulous, I said, "Seriously? Is this still about the ball?" Wrong question, Mom. Because yes, it was still about the "you-know-what" that apparently we weren't allowed to discuss anymore. That darn ball is like the Voldemort of our summer break.
The rest of the week wasn't much better. We saw a movie, played with friends, and hung out together. A lot. A lot of time together. The kids played, the kids fought, the kids played, the kids fought, and then the kids fought some more. In the meantime, T started his chemoradiation at Northwestern. He is already feeling fatigued and nauseous from the treatments, and he's only three sessions in. He started taking the anti-nausea medication prescribed to him by one of his doctors. Unfortunately, he had a terrible reaction to that particular medication, and it ended up being more of a regurgitant than anything else. He spent the entire Fourth of July vomiting and having chest and back pains. He was out of it, I was terrified, and the kids could only think about fireworks. 'Merica. He talked to a doctor at NMH on Saturday, and she prescribed a new med for him to try. Fingers crossed that this one won't make the chemo seem like a walk in the park.
Thank goodness this week brings a return to some semblance of schedule for the kids and for me. I think a little routine makes everyone feel a bit more secure. The kids will be back to summer camp, ballet, and tae kwan do while T will start his first full week of treatments. I'll be attempting to keep all the balls in the air at any given time. Once again, I am grateful for my family and friends who have done so much for all of us. I hope someday to be able to repay all of you individually for your kindness, concern, and help, but for now, please know how much we appreciate your love and support.
Our eyes are on the prize, always on the prize.
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