I woke up this morning and the sun was shining. Not just outside; inside, too. I feel as though I have crawled up out of a dark dank hole where I have lived for several months now. I have survived! I have some scars and numbness and about half my brain is missing, but it is great to be here. And there are great things coming.
If I have to do it again, I know how. But I'd really rather not.
Wednesday, November 11, 2009
The Orem library called today to say that the check I mailed them to pay the overdue fines was written to Provo library instead. In the mail today I received a note from Provo library returning the check I had mailed to them to pay overdue fines because it was the check for the Orem library.
Funny, but I thought I checked each envelope to make sure the correct check was in the correct one with the correct letter.
Nathaniel's teacher called to ask if I was coming to parent-teacher conferences. I had scheduled an organ lesson at the same time. This was the second time I had rescheduled the organ lesson. Last time I had to write an apologetic note saying I had forgotten that I was supposed to present a lesson at the workshop Steve is teaching, because it was the same time and I had already paid for it, and take it to the student's house right before Chris took me to pick up the car from the shop so I could drive myself to the workshop so he could pick up Bethany from her clarinet lesson. The first time I had to reschedule because I completely forgot to go. I wasn't going to reschedule the organ lesson three times!
I also forgot which church I was supposed to meet my own organ teacher at, so when she wasn't at the one where I was waiting, I drove quickly to the elementary school close by to borrow the Internet connection to look at my email which said the address of the correct church. Five blocks west.
I have forgotten to take Reuben to preschool, and to pick him up. I have forgotten to make a lunch for Stephen in the morning. I have forgotten to brush teeth, to change out of pajamas, to have my kids do their homework or practice, to do laundry, to read scriptures, to go grocery shopping. I forget to change out of my slippers before I drive someone somewhere. I have forgotten to feed the chickens. I have forgotten to pick Nathaniel up from school, even after looking on the calendar and reading the note I had written there.
I remember perfectly the phone number we had when I was seven years old.
Funny, but I thought I checked each envelope to make sure the correct check was in the correct one with the correct letter.
Nathaniel's teacher called to ask if I was coming to parent-teacher conferences. I had scheduled an organ lesson at the same time. This was the second time I had rescheduled the organ lesson. Last time I had to write an apologetic note saying I had forgotten that I was supposed to present a lesson at the workshop Steve is teaching, because it was the same time and I had already paid for it, and take it to the student's house right before Chris took me to pick up the car from the shop so I could drive myself to the workshop so he could pick up Bethany from her clarinet lesson. The first time I had to reschedule because I completely forgot to go. I wasn't going to reschedule the organ lesson three times!
I also forgot which church I was supposed to meet my own organ teacher at, so when she wasn't at the one where I was waiting, I drove quickly to the elementary school close by to borrow the Internet connection to look at my email which said the address of the correct church. Five blocks west.
I have forgotten to take Reuben to preschool, and to pick him up. I have forgotten to make a lunch for Stephen in the morning. I have forgotten to brush teeth, to change out of pajamas, to have my kids do their homework or practice, to do laundry, to read scriptures, to go grocery shopping. I forget to change out of my slippers before I drive someone somewhere. I have forgotten to feed the chickens. I have forgotten to pick Nathaniel up from school, even after looking on the calendar and reading the note I had written there.
I remember perfectly the phone number we had when I was seven years old.
Friday, November 6, 2009
Hopefully the increased thyroid prescription will give me some energy, because nothing else has. I have become a shuffler. I throw on the same sweats and hoodie I wore yesterday and the day before that, shove my feet into my slippers, and shuffle downstairs to throw bowls and milk and spoons on the table so people can inhale something before I drive them to school because they are late because I couldn't make myself get out of bed to check if they were out of bed.
By that time, I'm so exhausted I have to read a book so I'll stay awake to make sure Joe gets to school instead of "taking care of Reuben while you sleep, Mom." Books are dangerous because they are so much easier than getting out all the bills to pay, or emptying the dishwasher or putting clothes in the washing machine or getting Reuben dressed so we can go shopping, since the food in the house consists of cold cereal and tortillas that dried out because somebody ripped the bag and I didn't notice. Books are good because they help me mask my frustration with my body, mind, and energy level.
By the time I remember to feed the chickens, I have noticed that my forehead hurts, not enough to be called a headache; the pain is lurking just above my eyebrows, as though there were a cloud over my brain right there, pushing to get out. Pressure. It is hard to think.
Where did all that energy I had during the summer go? I know I felt good a couple of weeks ago. Did the wedding really wipe me out for two weeks? Or was it taking care of sick kids and trying not to catch their germs?
I decided today that I can't help at the school, because I can't even make myself get dressed to take Reuben to preschool; I've gone in pajamas three times in one week! I don't necessarily feel depressed. Just hollow.
My plan is this: go to bed as soon after 9 as people finish their homework. Drink lots of water. No skipping breakfast or lunch--eat as soon as I remember it is mealtime. Concentrate on one household chore a day. Start dinner in the morning. Rest.
I can do things if I do them slowly. Steve is glad I'm still here. I am glad I'm still here. The kids are glad I'm still here, even if I do make them practice and do homework and dishes. Even if I'm on slow-mo permanently.
By that time, I'm so exhausted I have to read a book so I'll stay awake to make sure Joe gets to school instead of "taking care of Reuben while you sleep, Mom." Books are dangerous because they are so much easier than getting out all the bills to pay, or emptying the dishwasher or putting clothes in the washing machine or getting Reuben dressed so we can go shopping, since the food in the house consists of cold cereal and tortillas that dried out because somebody ripped the bag and I didn't notice. Books are good because they help me mask my frustration with my body, mind, and energy level.
By the time I remember to feed the chickens, I have noticed that my forehead hurts, not enough to be called a headache; the pain is lurking just above my eyebrows, as though there were a cloud over my brain right there, pushing to get out. Pressure. It is hard to think.
Where did all that energy I had during the summer go? I know I felt good a couple of weeks ago. Did the wedding really wipe me out for two weeks? Or was it taking care of sick kids and trying not to catch their germs?
I decided today that I can't help at the school, because I can't even make myself get dressed to take Reuben to preschool; I've gone in pajamas three times in one week! I don't necessarily feel depressed. Just hollow.
My plan is this: go to bed as soon after 9 as people finish their homework. Drink lots of water. No skipping breakfast or lunch--eat as soon as I remember it is mealtime. Concentrate on one household chore a day. Start dinner in the morning. Rest.
I can do things if I do them slowly. Steve is glad I'm still here. I am glad I'm still here. The kids are glad I'm still here, even if I do make them practice and do homework and dishes. Even if I'm on slow-mo permanently.
Wednesday, October 28, 2009
I made the mistake, when I went to my appointment at the Cancer Center today, of sitting in direct line-of-vision to the treatment room. And then I made the mistake of not moving when I noticed that I could see where I used to sit in a blue vinyl recliner with an IV stand next to me and the icy colorless cocktail dripping into my chest.
Moment of panic--they're going to come get me and say, "Sorry! We were wrong! Your cancer is back. Let's hook you up, girl!"
The guy in scrubs came to fetch me and neither he nor Shirley the nurse practitioner said those words. I asked Shirley about calling the surgeon to get Penelope removed, and she said I could do it; their office doesn't make those calls.
So guess what I did when I got home? Yep. My appointment with the surgeon is Nov. 19.
Moment of panic--they're going to come get me and say, "Sorry! We were wrong! Your cancer is back. Let's hook you up, girl!"
The guy in scrubs came to fetch me and neither he nor Shirley the nurse practitioner said those words. I asked Shirley about calling the surgeon to get Penelope removed, and she said I could do it; their office doesn't make those calls.
So guess what I did when I got home? Yep. My appointment with the surgeon is Nov. 19.
Tuesday, October 20, 2009
It is now officially one year and 20 days since I began chemotherapy. It seems so foreign to me, so far away from my current reality. I still know that I went through it, but I am very happy to forego that experience this October. When I hear myself griping about something, I think, "But I'm here! Why am I complaining?"
Paradoxically, now that I have hair, I am irritated by it. One Saturday a few weeks ago, I couldn't take the pressure any more and I called every hair salon in Provo until I found one with an appointment immediately so I could get my hair cut. I assume that I will slowly grow used to it, and I always have hats to use on Bad Hair Days!
I am taking organ lessons, and emailed my teacher a couple of weeks ago to say that I had been sick and so could not have a lesson. I didn't explain that I had had a horrible cold, which I now think was actually Swine Flu, and that it had taken me nearly two weeks to feel better. She panicked, because her daughter died from the effects of cancer a year or so ago, and she and her husband had just returned from a memorial service held in her daughter's honor in Colorado [the daughter was a firefighter and had her name on the memorial stone for the year]. She pictured all of that happening to me, apparently. I am so happy that it hasn't!
Reuben is having his stuffed dogs snuggle on my shoulder. I am wearing my fuzzy purple robe and pink slippers, and I'm ignoring the chickens. After I'm done here I will go sew and ignore the dishes! More and more cousins keep appearing, as this is the Week Of Wedding [only three more days, James and Nicole!]
I love chaos and noise. I love ignoring housework. I love having my phone fixed because Otto came yesterday to analyze wires and accidentally broke a toy bin by attempting to stand on it. I love braiding Sariah's clean wet hair. I love hearing Jane's voice on the answering machine saying that Ian is in Reuben withdrawal and needs a fix. I love opening a gray velvet box from Frank and finding a Damascus steel pendant he made. I love impending dart gun wars. I love hearing Jazon gripe about reports for work. I love running into Marianne and Julia and Jared at concerts. I love reading my book in the car as Nathaniel and I wait for the bus to come. I love kissing my husband before he is late to work because he forgot he had a meeting at 7 a.m. and we snuggled in bed instead.
Paradoxically, now that I have hair, I am irritated by it. One Saturday a few weeks ago, I couldn't take the pressure any more and I called every hair salon in Provo until I found one with an appointment immediately so I could get my hair cut. I assume that I will slowly grow used to it, and I always have hats to use on Bad Hair Days!
I am taking organ lessons, and emailed my teacher a couple of weeks ago to say that I had been sick and so could not have a lesson. I didn't explain that I had had a horrible cold, which I now think was actually Swine Flu, and that it had taken me nearly two weeks to feel better. She panicked, because her daughter died from the effects of cancer a year or so ago, and she and her husband had just returned from a memorial service held in her daughter's honor in Colorado [the daughter was a firefighter and had her name on the memorial stone for the year]. She pictured all of that happening to me, apparently. I am so happy that it hasn't!
Reuben is having his stuffed dogs snuggle on my shoulder. I am wearing my fuzzy purple robe and pink slippers, and I'm ignoring the chickens. After I'm done here I will go sew and ignore the dishes! More and more cousins keep appearing, as this is the Week Of Wedding [only three more days, James and Nicole!]
I love chaos and noise. I love ignoring housework. I love having my phone fixed because Otto came yesterday to analyze wires and accidentally broke a toy bin by attempting to stand on it. I love braiding Sariah's clean wet hair. I love hearing Jane's voice on the answering machine saying that Ian is in Reuben withdrawal and needs a fix. I love opening a gray velvet box from Frank and finding a Damascus steel pendant he made. I love impending dart gun wars. I love hearing Jazon gripe about reports for work. I love running into Marianne and Julia and Jared at concerts. I love reading my book in the car as Nathaniel and I wait for the bus to come. I love kissing my husband before he is late to work because he forgot he had a meeting at 7 a.m. and we snuggled in bed instead.
Tuesday, September 1, 2009
Had a follow-up with the radiation people yesterday. They agree with me that I am amazing. I don't really mean that the way it sounds. The good facts:
1) I have no pain in my bones.
2) I have no lumps.
3) I do not have headaches or fuzzy vision.
4) My radiation scars are healing.
5) I do not have big bruises that don't go away.
6) I have energy.
7) I am able to eat normally.
8) I am not bleeding unaccountably.
We also discussed hair. And Penelope. And the possibility of removing Penelope. And children in preschool. And thyroid gland removal [hers]. I weigh 150-something.
I also snuck back to see Gary and Brooke in the tech room. The picture of Brooke and me in an outrageous hat on my graduation day is still up. They were just coming back from lunch, but at least I got to say hi and make small talk for a minute. I miss them. But I don't really want to go see them every day for radiation therapy.
My hair is getting long enough to be annoying. I trimmed the bits in front of my ears by myself a couple of Sundays ago because I couldn't stand the sticking-out business. And now I'm bothered by the bushiness on top. Ironic that I'm irritated by hair so soon after being so excited that it was growing again.
1) I have no pain in my bones.
2) I have no lumps.
3) I do not have headaches or fuzzy vision.
4) My radiation scars are healing.
5) I do not have big bruises that don't go away.
6) I have energy.
7) I am able to eat normally.
8) I am not bleeding unaccountably.
We also discussed hair. And Penelope. And the possibility of removing Penelope. And children in preschool. And thyroid gland removal [hers]. I weigh 150-something.
I also snuck back to see Gary and Brooke in the tech room. The picture of Brooke and me in an outrageous hat on my graduation day is still up. They were just coming back from lunch, but at least I got to say hi and make small talk for a minute. I miss them. But I don't really want to go see them every day for radiation therapy.
My hair is getting long enough to be annoying. I trimmed the bits in front of my ears by myself a couple of Sundays ago because I couldn't stand the sticking-out business. And now I'm bothered by the bushiness on top. Ironic that I'm irritated by hair so soon after being so excited that it was growing again.
Sunday, August 23, 2009
I played the organ for Ken's funeral yesterday morning. My tribute to him is that all during my cancer treatments and surgeries and doctor's visits and feeling yucky, people would tell me how wonderfully courageous I was being, and I would think, "This is nothing compared to what Ken is doing and has done for the last 20 years." My goal was to face it all like Ken and Leslie did. And now Ken is free from MS! Congratulations to Leslie! I hope I get to know Ken better in heaven.
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