This strange new life
I kind of hate it. This treading water. I look back on my old life and it wasn't slam packed with fun, but it was....interesting.
If there was a play coming to the city and I wanted to see it, I got us tickets. Checked with friends/family to see if they wanted to come with us.
If I was in the mood for bbq, I would text T and see if she felt like going out for it that night. If so, we did.
I would come home, change out of my work clothes and into sweats and there was a multitude of things to do. Wash. Check emails. Work on blog. Watch TV. If it was my turn, make dinner. If not, eat dinner. On the weekends, we would go over to our neighbor's house and watch the Husker game if it was football season. Before going, I would make guacamole and send T out to buy chips because we always forgot to buy them. We'd change the sheets together and give the bedroom a deep cleaning every Saturday morning. On the other days, I would clean a room every day. Sundays were the office. Monday nights, the bathrooms. Tuesday night, the dining room. Wednesday night, the living room. Thursday night, a run through in the kitchen...this was easy because it was cleaned pretty much every night after eating. Friday night, grocery shopping together after eating at our favorite Mexican place. It is amazing how you don't buy junk food when when you are full of chicken enchiladas.
I did this effortlessly, while working at a pretty stressful full time job. I fit in dinners with my sister and friends from time to time.
Now, I look back on all this hoopla and it seems as if I were Wonder Woman or something. I no longer have the stamina to go grocery shopping. T does it while I wait in the car. I do make the grocery list, but it is very small now since I barely eat anything. Rice pudding cups. Lots of yogurt. Mrs. Grass Chicken Noodle Soup. Atkins shakes. Good bread because good bread makes good toast. Real butter from Ireland. Because real butter is so good and doesn't upset the stomach. Peanut butter. Because sometimes peanut butter is the only thing that makes the toast stay down. Crackers. Ginger snaps. Celery. Stouffers turkey pot pies.
My life is extraordinarily small now. I sleep a lot. I mean A LOT. Like I am in bed by 7:30 and sleep until the next morning til 10:30. Yes. 15 hours. But, this isn't hard sleep. This is wake up with nightmares a lot. Wake up in pain. A lot. Even if I am super duper quiet, I nearly always wake up T. She will come in and gently ask what she can do to help. If I am hurting, she will apply CBD balm and/or oil. Lay next to me and talk very, very softly until I fall back asleep. Sometimes, she will just slowly stroke the back of my hand back and forth and back and forth. I am so desperately grateful for this that I seem to have a perpetual lump in my throat. I know how much this costs her the next day at her job.
She sets her alarm for 5 and goes for her walk/run. Comes back at 6 and showers, dresses for work and leaves by 6:45. She comes in the bedroom, kisses me goodbye and I usually sleep right through it.
I awaken at around 10:30. I get up, make the bed and get dressed. This takes me a good 45 minutes because I have to keep stopping and resting. Yes, I am now that decrepit. I get up and force myself to drink an Atkins shake for breakfast. I am never hungry or thirsty, but know it is important that I do this.
After that, I watch television, read, do my blog, or watch stupid things on YouTube until 1. Then, I put my coat on and go get a coffee. I probably should not be driving. My anemia is so bad now that the first thing the doctor asks me is, "Are you feeling faint? Have you fallen?" I always lie. I often feel faint, but I don't fall because I do something that we cancer patients call furniture surfing. When we walk, we glide from sofa to chair, etc. If I go outside, I am never without my cane. Once I am in my car, I feel safest. Cherry and I get along fine. I can do very small chores. I can pick up prescriptions from the pharmacy. Get coffee. Go to Lithuanian Bakery or Le Quartier for that good bread that makes good toast. Go to Fareway for bologna or just-off-the-bone ham. Small chores.
When I get home, I come inside and drink a big glass of water. Make myself eat a half sandwich. A cup of soup. Then the best part of my day: I nap from 2:30 to whenever T gets home from work. Usually around 4:30. I sit in the car while she goes for her walk around the pond. Peruse the mail. Then we come home and she makes dinner. She goes to much trouble to find something that I will eat. Grilled cheese sandwich. Stouffers Baked Chicken Dinner. A child sized Arby's roast beef (or roast beast, as we refer to it...) I have become a notoriously picky eater. Then, I watch television while she works on grading papers or working on her dissertation until it is 7 and time for her to help me shower and go to bed.
Yes, I now need help showering. It is slippery in there and my balance is precarious. T is tender and never unkind or impatient. I truly do not know how she does this night after night after night. She swears that it is her honor to do this. Or as she says, "I offer gold standard service, ma'am." She is truly a gift to me.
And these are just the days when I don't have chemo, or a follow up goody bag, labs, or one of my many doctor appointments. These, I go to by myself because T has to work. If I am feeling truly horrid, I ask our neighbor Tom to drive me or a friend, but I do everything I can NOT to ask for help. Those days have a sort of nightmarish quality to them. I struggle to take legible notes. When I get home, I simply collapse on the sofa or lazy boy, too tired to eat or talk. I fall into a deep sleep that scares T when she comes home from work as I barely stir.
"Someone could come in and rob the place and you wouldn't wake," she says. She's right and it is probably for the best because I would probably speak in gibberish.
I do not enjoy this new life. I feel as if I am slowly falling down a rabbit hole. Dying in slow motion. And nobody sees us. They just see the perky texts. Which is easier on all of us. The last thing I want to see at my front door is a line of guilty faced people carrying trays of lasagna.
Sometimes, when T and I are laying in bed after a nap and just enjoying the comfort of each other's faces, I feel very lucky. I know from speaking with friends and family that not everyone gets this sort of love in their life. I get lost in her perfect brown eyes.
And that is what pulls me through this sad ending.
In the end, it is her. Always her.
If there was a play coming to the city and I wanted to see it, I got us tickets. Checked with friends/family to see if they wanted to come with us.
If I was in the mood for bbq, I would text T and see if she felt like going out for it that night. If so, we did.
I would come home, change out of my work clothes and into sweats and there was a multitude of things to do. Wash. Check emails. Work on blog. Watch TV. If it was my turn, make dinner. If not, eat dinner. On the weekends, we would go over to our neighbor's house and watch the Husker game if it was football season. Before going, I would make guacamole and send T out to buy chips because we always forgot to buy them. We'd change the sheets together and give the bedroom a deep cleaning every Saturday morning. On the other days, I would clean a room every day. Sundays were the office. Monday nights, the bathrooms. Tuesday night, the dining room. Wednesday night, the living room. Thursday night, a run through in the kitchen...this was easy because it was cleaned pretty much every night after eating. Friday night, grocery shopping together after eating at our favorite Mexican place. It is amazing how you don't buy junk food when when you are full of chicken enchiladas.
I did this effortlessly, while working at a pretty stressful full time job. I fit in dinners with my sister and friends from time to time.
Now, I look back on all this hoopla and it seems as if I were Wonder Woman or something. I no longer have the stamina to go grocery shopping. T does it while I wait in the car. I do make the grocery list, but it is very small now since I barely eat anything. Rice pudding cups. Lots of yogurt. Mrs. Grass Chicken Noodle Soup. Atkins shakes. Good bread because good bread makes good toast. Real butter from Ireland. Because real butter is so good and doesn't upset the stomach. Peanut butter. Because sometimes peanut butter is the only thing that makes the toast stay down. Crackers. Ginger snaps. Celery. Stouffers turkey pot pies.
My life is extraordinarily small now. I sleep a lot. I mean A LOT. Like I am in bed by 7:30 and sleep until the next morning til 10:30. Yes. 15 hours. But, this isn't hard sleep. This is wake up with nightmares a lot. Wake up in pain. A lot. Even if I am super duper quiet, I nearly always wake up T. She will come in and gently ask what she can do to help. If I am hurting, she will apply CBD balm and/or oil. Lay next to me and talk very, very softly until I fall back asleep. Sometimes, she will just slowly stroke the back of my hand back and forth and back and forth. I am so desperately grateful for this that I seem to have a perpetual lump in my throat. I know how much this costs her the next day at her job.
She sets her alarm for 5 and goes for her walk/run. Comes back at 6 and showers, dresses for work and leaves by 6:45. She comes in the bedroom, kisses me goodbye and I usually sleep right through it.
I awaken at around 10:30. I get up, make the bed and get dressed. This takes me a good 45 minutes because I have to keep stopping and resting. Yes, I am now that decrepit. I get up and force myself to drink an Atkins shake for breakfast. I am never hungry or thirsty, but know it is important that I do this.
After that, I watch television, read, do my blog, or watch stupid things on YouTube until 1. Then, I put my coat on and go get a coffee. I probably should not be driving. My anemia is so bad now that the first thing the doctor asks me is, "Are you feeling faint? Have you fallen?" I always lie. I often feel faint, but I don't fall because I do something that we cancer patients call furniture surfing. When we walk, we glide from sofa to chair, etc. If I go outside, I am never without my cane. Once I am in my car, I feel safest. Cherry and I get along fine. I can do very small chores. I can pick up prescriptions from the pharmacy. Get coffee. Go to Lithuanian Bakery or Le Quartier for that good bread that makes good toast. Go to Fareway for bologna or just-off-the-bone ham. Small chores.
When I get home, I come inside and drink a big glass of water. Make myself eat a half sandwich. A cup of soup. Then the best part of my day: I nap from 2:30 to whenever T gets home from work. Usually around 4:30. I sit in the car while she goes for her walk around the pond. Peruse the mail. Then we come home and she makes dinner. She goes to much trouble to find something that I will eat. Grilled cheese sandwich. Stouffers Baked Chicken Dinner. A child sized Arby's roast beef (or roast beast, as we refer to it...) I have become a notoriously picky eater. Then, I watch television while she works on grading papers or working on her dissertation until it is 7 and time for her to help me shower and go to bed.
Yes, I now need help showering. It is slippery in there and my balance is precarious. T is tender and never unkind or impatient. I truly do not know how she does this night after night after night. She swears that it is her honor to do this. Or as she says, "I offer gold standard service, ma'am." She is truly a gift to me.
And these are just the days when I don't have chemo, or a follow up goody bag, labs, or one of my many doctor appointments. These, I go to by myself because T has to work. If I am feeling truly horrid, I ask our neighbor Tom to drive me or a friend, but I do everything I can NOT to ask for help. Those days have a sort of nightmarish quality to them. I struggle to take legible notes. When I get home, I simply collapse on the sofa or lazy boy, too tired to eat or talk. I fall into a deep sleep that scares T when she comes home from work as I barely stir.
"Someone could come in and rob the place and you wouldn't wake," she says. She's right and it is probably for the best because I would probably speak in gibberish.
I do not enjoy this new life. I feel as if I am slowly falling down a rabbit hole. Dying in slow motion. And nobody sees us. They just see the perky texts. Which is easier on all of us. The last thing I want to see at my front door is a line of guilty faced people carrying trays of lasagna.
Sometimes, when T and I are laying in bed after a nap and just enjoying the comfort of each other's faces, I feel very lucky. I know from speaking with friends and family that not everyone gets this sort of love in their life. I get lost in her perfect brown eyes.
And that is what pulls me through this sad ending.
In the end, it is her. Always her.
It’s been a couple weeks. Evie learned to write her z’s this week. Ezra is dreaming he’s Superman, fighting bad guys in his sleep and waking up with really wild hair. How are you doing?
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