A walk through purgatory
You are in the car with your wife, driving to get her some take out for dinner. Things have been tense between you and you regret it.
It always seems to revolve around food. Like most humans, your wife enjoys eating. She gets hungry. Food, for you, is no longer an enjoyment. It is fuel that must be eaten to survive. This is a common topic in my support group.
"It drives me NUTS that my husband seems to think about food 24/7. Was I like that before cancer? I don't recall. Now it seems it is all he talks about. What to eat for breakfast. He just mowed the lawn and needs a snack. He sits next to me crunching on pretzels as we watch movies and I find it sickening to kiss him after he eats."
"I am still expected to put meals on the table for my family and I swear that they all seem to be like a pack of hyenas. They ATTACK the food like jackals. Did I used to be like this before cancer?"
Yes and no. Now that you are in chemo, food is not high on your list of haves or wants. But, think back. Remember how good a Snickers bar tasted at 3 p.m. on a really long work day? How fun it was to eat a bowl of popcorn while you watched a movie together? So, yes. And no. Yes, it does seem like everyone around you seems obsessed with food. Because most people eat three times a day and have one or two snacks in between. You are the odd one, not them.
Anyway...you and your wife have been snitting at each other a little. You were out doing chores and it was 4:00 and she expressed a desire to eat. You were annoyed. For GOD SAKES, she just ate lunch at 11:30! You had sighed and said that NO, you were NOT hungry. Why didn't you just stop and get her something to eat and take it home and you might be able to eat a yogurt with her. She had answered that you needed to eat something with more PROTEIN, that you were not getting enough PROTEIN.
Privately, you thought to yourself that if she said the word protein one more time, you were going to scream. Instead, you said that maybe you would have room for peanut butter toast, too.
Not.
And that is when the world stops spinning. Because your phone rings and it is your oncologist. You just had labs that morning. You have an appointment with her in two days. This can only be bad news. They only call you early if it is bad news.
You turn off the radio and answer the phone. Your wife hears your voice go tremulous and her face gets that serious, scared look.
It is your oncologist's nurse.
Nurse: Hi, Mrs. L. It's Grace from Dr. P's office. We got your labs back.....
You: And?
N: Dr. P would like you to stop taking Ibrance immediately. Your white blood cell count is at 2, but your neuts are at .8. You know that they have to be at least 1.4 to continue treatment. Plus, well.....your cancer markers are at 134.
She stops because you have gasped. Your cancer markers have NEVER been that high. And while your white blood cell counts have always been low, your neuts have held steady at 1.4. This is not just bad news. It is terrible news.
N: Still with me, Mrs. L?
Y: Um..yes. I am. I just....134??!! That is pretty high. And .8 is really, really low.
T is now parking the car under a tree in a movie parking lot. Her hands are shaking. You try to keep your voice steady. You don't want to upset her.
N: Well, yes. You will have a lot to talk about on Wednesday. So..no more Ibrance, okay? And please....consider yourself under house arrest now. You cannot afford to catch even a small cold. If you have pets, stay away from them. A cat scratch could be fatal to you now. No gardening of any kind without gloves. Do not lift heavy objects or entertain guests in your home. Okay?
Y: (quietly, terrified) Okay. I guess I will see you in two days.
N: Right. Have a great night!
Are you fucking KIDDING me?
Y: Okay. Thank you. Goodbye.
You turn off the phone and turn to look at T. She is looking at you, terrified. You take three deep breaths. You have to be strong now. You keep your voice as level as you can and relay what the nurse has told you.
There is a long silence. You look out of the window at the blue sky, at the fluffy clouds. You see people walking into the movie theater, laughing, ready for some entertainment. It is all too much suddenly. Why does everyone else get to have so much ease in their lives while yours is so filled with bad news? Constant bad news. You can never seem to catch a break. You want to smash every window in every car in the parking lot. You want a bat. You want to lash out.
Instead, you burst into tears, which is the last thing that you want to do. You hang your head and cry. Loud, ugly sobs that are filled with such anger, pain, resentment, fear, and pure unfiltered terror. T is crying, too, but silently.
You finally are able to talk.
You tell her that this probably means that you should not be picking up that kitten on Sunday that you've both been planning on. The kitten was your idea, even though you are not really a cat person. She is a cat person. You thought it might be a good idea for her to have a cat as a companion for when you are gone.
T nods. Says that she was just thinking that she could never live with herself if the kitten scratched your ankle, and kittens DO scratch ankles. She says that she is fine with that. She is fine with anything that will keep you with her longer. That maybe the oncologist will have an idea for a new medication to try. Maybe the cancer is just not responding to the Ibrance. Maybe there are new lesions and you need to have some tests to see what they are. And maybe something new will be tried and work better.
You hold hands for a long time, not saying anything. And then you remember that you are supposed to go to California in a month. You have to get your levels up far enough to be able to fly. You say as much. T nods miserably.
What was a slightly annoying day has turned into a terrifying one. You sit in that parking lot for another several minutes, saying your I love you so muches, It is going to be okay, I just know its. We are in this togethers. I've got yous.
Finally, tears spent, you both square your shoulders. You tell her to drive on to get her take out. She sighs. Says that she is no longer hungry.
"Get it anyway. I need this day to go back to normal, just a little bit. Please."
T starts the car and heads to the take out place.
This is a walk through purgatory. But, you have a hand to hold. A sister who will send you a long text about how much she loves you and can be next to you in just a few hours if you need her. An old work friend who tells you that she is available to talk if you need it. A friend in California who sends you music to listen to if you can't sleep. You have so much.
Later, T mows the front yard. This is cathartic for her. She needs a physical chore when things are hard. You watch her from your lawn chair and listen to the robin singing its twilight song to the world. Your hawthorne tree makes its leaves dance and you are astonished to find a toad sitting under a bush, staring at you. You leave it alone. It rewards you by not immediately hopping away, but allowing you to stare back at it.
Cars drive by on the street, lazy hands hanging out of the windows, glad to finally have warm weather. The air smells like cut grass and spicy chives.
Life goes on.
That night, you will dread going to bed, fearful that you will lay awake on your back, ceiling gazing. Instead, you fall into bed with an exhaustion as deep as a river and you dream of your Dad singing a Jimmie Rodgers' song: Blue Yodel Number 9. He has a dreamy smile on his face and you feel right at home.
My good girl love me, everybody knows
Spent a hundred cash dollars to buy me a suit of
clothes.........
Life really does just go on and you have to keep an eye out for the hidden toads and listen for the robin's lullabyes.
It always seems to revolve around food. Like most humans, your wife enjoys eating. She gets hungry. Food, for you, is no longer an enjoyment. It is fuel that must be eaten to survive. This is a common topic in my support group.
"It drives me NUTS that my husband seems to think about food 24/7. Was I like that before cancer? I don't recall. Now it seems it is all he talks about. What to eat for breakfast. He just mowed the lawn and needs a snack. He sits next to me crunching on pretzels as we watch movies and I find it sickening to kiss him after he eats."
"I am still expected to put meals on the table for my family and I swear that they all seem to be like a pack of hyenas. They ATTACK the food like jackals. Did I used to be like this before cancer?"
Yes and no. Now that you are in chemo, food is not high on your list of haves or wants. But, think back. Remember how good a Snickers bar tasted at 3 p.m. on a really long work day? How fun it was to eat a bowl of popcorn while you watched a movie together? So, yes. And no. Yes, it does seem like everyone around you seems obsessed with food. Because most people eat three times a day and have one or two snacks in between. You are the odd one, not them.
Anyway...you and your wife have been snitting at each other a little. You were out doing chores and it was 4:00 and she expressed a desire to eat. You were annoyed. For GOD SAKES, she just ate lunch at 11:30! You had sighed and said that NO, you were NOT hungry. Why didn't you just stop and get her something to eat and take it home and you might be able to eat a yogurt with her. She had answered that you needed to eat something with more PROTEIN, that you were not getting enough PROTEIN.
Privately, you thought to yourself that if she said the word protein one more time, you were going to scream. Instead, you said that maybe you would have room for peanut butter toast, too.
Not.
And that is when the world stops spinning. Because your phone rings and it is your oncologist. You just had labs that morning. You have an appointment with her in two days. This can only be bad news. They only call you early if it is bad news.
You turn off the radio and answer the phone. Your wife hears your voice go tremulous and her face gets that serious, scared look.
It is your oncologist's nurse.
Nurse: Hi, Mrs. L. It's Grace from Dr. P's office. We got your labs back.....
You: And?
N: Dr. P would like you to stop taking Ibrance immediately. Your white blood cell count is at 2, but your neuts are at .8. You know that they have to be at least 1.4 to continue treatment. Plus, well.....your cancer markers are at 134.
She stops because you have gasped. Your cancer markers have NEVER been that high. And while your white blood cell counts have always been low, your neuts have held steady at 1.4. This is not just bad news. It is terrible news.
N: Still with me, Mrs. L?
Y: Um..yes. I am. I just....134??!! That is pretty high. And .8 is really, really low.
T is now parking the car under a tree in a movie parking lot. Her hands are shaking. You try to keep your voice steady. You don't want to upset her.
N: Well, yes. You will have a lot to talk about on Wednesday. So..no more Ibrance, okay? And please....consider yourself under house arrest now. You cannot afford to catch even a small cold. If you have pets, stay away from them. A cat scratch could be fatal to you now. No gardening of any kind without gloves. Do not lift heavy objects or entertain guests in your home. Okay?
Y: (quietly, terrified) Okay. I guess I will see you in two days.
N: Right. Have a great night!
Are you fucking KIDDING me?
Y: Okay. Thank you. Goodbye.
You turn off the phone and turn to look at T. She is looking at you, terrified. You take three deep breaths. You have to be strong now. You keep your voice as level as you can and relay what the nurse has told you.
There is a long silence. You look out of the window at the blue sky, at the fluffy clouds. You see people walking into the movie theater, laughing, ready for some entertainment. It is all too much suddenly. Why does everyone else get to have so much ease in their lives while yours is so filled with bad news? Constant bad news. You can never seem to catch a break. You want to smash every window in every car in the parking lot. You want a bat. You want to lash out.
Instead, you burst into tears, which is the last thing that you want to do. You hang your head and cry. Loud, ugly sobs that are filled with such anger, pain, resentment, fear, and pure unfiltered terror. T is crying, too, but silently.
You finally are able to talk.
You tell her that this probably means that you should not be picking up that kitten on Sunday that you've both been planning on. The kitten was your idea, even though you are not really a cat person. She is a cat person. You thought it might be a good idea for her to have a cat as a companion for when you are gone.
T nods. Says that she was just thinking that she could never live with herself if the kitten scratched your ankle, and kittens DO scratch ankles. She says that she is fine with that. She is fine with anything that will keep you with her longer. That maybe the oncologist will have an idea for a new medication to try. Maybe the cancer is just not responding to the Ibrance. Maybe there are new lesions and you need to have some tests to see what they are. And maybe something new will be tried and work better.
You hold hands for a long time, not saying anything. And then you remember that you are supposed to go to California in a month. You have to get your levels up far enough to be able to fly. You say as much. T nods miserably.
What was a slightly annoying day has turned into a terrifying one. You sit in that parking lot for another several minutes, saying your I love you so muches, It is going to be okay, I just know its. We are in this togethers. I've got yous.
Finally, tears spent, you both square your shoulders. You tell her to drive on to get her take out. She sighs. Says that she is no longer hungry.
"Get it anyway. I need this day to go back to normal, just a little bit. Please."
T starts the car and heads to the take out place.
This is a walk through purgatory. But, you have a hand to hold. A sister who will send you a long text about how much she loves you and can be next to you in just a few hours if you need her. An old work friend who tells you that she is available to talk if you need it. A friend in California who sends you music to listen to if you can't sleep. You have so much.
Later, T mows the front yard. This is cathartic for her. She needs a physical chore when things are hard. You watch her from your lawn chair and listen to the robin singing its twilight song to the world. Your hawthorne tree makes its leaves dance and you are astonished to find a toad sitting under a bush, staring at you. You leave it alone. It rewards you by not immediately hopping away, but allowing you to stare back at it.
Cars drive by on the street, lazy hands hanging out of the windows, glad to finally have warm weather. The air smells like cut grass and spicy chives.
Life goes on.
That night, you will dread going to bed, fearful that you will lay awake on your back, ceiling gazing. Instead, you fall into bed with an exhaustion as deep as a river and you dream of your Dad singing a Jimmie Rodgers' song: Blue Yodel Number 9. He has a dreamy smile on his face and you feel right at home.
My good girl love me, everybody knows
Spent a hundred cash dollars to buy me a suit of
clothes.........
Life really does just go on and you have to keep an eye out for the hidden toads and listen for the robin's lullabyes.
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