Chemo-brain is no-joke, people. I've been trying to compose a post for this space since my infusion on the 17th, and what I wanted to write about had nothing to do with the haze I've been in for ten days now. But this fog has been so thick it was just begging for its own post.
This was my day today, the first hour and thirteen minutes of which are pretty typical for a weekday. Our weekends are driven by the perpetual motion machine that is our son, so there is no time to stop and notice how little my brain is functioning - I'm happy if I can put together a decent grocery list on Sunday.
6:47: I wake up cranky because Chris closed a dresser drawer too loudly and I don't want him to "wake the baby." Chris points out that Quinn's sound machine is still on, and according to the baby monitor, Q hasn't budged. Whatever. I check email in bed because it doesn't require me to lift my head off the pillow.
7:18: Quinn wakes up, and we spend the next 42 minutes in a mad dash making breakfast, bribing Q to finish his waffles by offering him a cloud of canned whipped cream (the waffles are at least multi-grain), putting together something resembling a balanced meal for Q's lunch, getting him dressed while Chris does dishes, and getting them both out the door by 8. Ten minutes after they leave I remember Quinn is out of milk at daycare and we forgot it this morning. It's Monday, so I feel somewhat okay about my shoddy memory.
8:04: I log-in to my work computer. Now that I'm working from home, I don't even bother showering. What? It's not like my hair will get greasy. I do at least change out of my pajamas in case the mailman rings the doorbell. Plus, yoga clothes are more stretchy and comfortable. I tell myself it'll motivate me to go to class later - as in, eight hours later.
For the next hour, I read and respond to emails. It takes me awhile to compose one to a coworker who has donated very generously to my Avon Walk efforts. He lost his wife to breast cancer, so our interactions are emotional for both of us. Because of cancer, I instantly feel a kinship with him. On a side note, I hit $10,000 in my fundraising efforts today. I am overwhelmed by you guys.
9:29: Check Facebook and the Young Survival Coalition board. Send a couple of personal emails. I know, I shouldn't be admitting this publicly. For the next hour, I read through news articles, most of which are totally relevant to my job.
10:47: I decide it's "close enough" to lunchtime and have a couple of slices of leftover pizza. After lunch, I finally open the client file I need to work on this week and read through my notes. And I don't know if it just takes my morning coffee this long to kick in or if it is truly the chemo's fault, but I swear my brain doesn't actually click on until about 12:15. It gets progressively better, so that by about 5:20 my synapses are finally firing and I remember all of the things I wanted to accomplish that day, a good number of which required calls to doctors' offices that closed at 5.
4:15: Yoga. See? Those clothes did come in handy. And yes, I showered after class. Just in case you thought I meant I never showered now that I'm bald. I do - it's just more sporadic now.
7:10: After putting Q to bed, I start on dinner. And you know what? I have to substitute chili sauce for tomato paste and paprika for Old Bay seasoning because my grocery list yesterday was that incomplete.
Tomorrow, I'm having two cups of coffee. We'll see if that helps matters.
Monday, August 27, 2012
Thursday, August 16, 2012
Baldilocks
I'd forgotten how much my scalp hurts as my hair starts to go. I'll scratch my head only to come away with several strands under my nails. And I'm reluctant to wash it because so much hair ends up entangled in my fingers. My pillowcase in the mornings is covered in evidence that the chemo is taking effect.
Please, God, let it be killing the cancer as effectively.
*****
In the last couple of weeks, Quinn's language has really taken off. For starters, after months of calling both of us "Dada," he finally, finally said "Mama" last week. I love it, eat it up, ask him to repeat it at least ten times a day. He would rather say airplane, which he pronounces "up-pane," as he points his chubby little finger to the sky. Along with his new vocabulary, he's also really proud of his ability to locate his (and my) ears, nose, mouth, toes, belly and - you guessed it - hair. What will he think when my hair goes "bye-bye"?
Chris took a lint roller to the shirt I was wearing the other day to clean off some stray hairs; a few minutes later we found Quinn rolling the sticky tape over his own clothes, the little monkey. One of my biggest concerns this time around is how he's going to react to his mama being bald. Last fall, he was only six months old and oblivious to my lack of hair. So I asked around, and am reminded again of the fierceness and warmth and beauty of the women who've been through this. The general consensus seems to be that it's easier on kids if they're involved in the process somehow; many women said they let their toddlers draw on their bald heads with washable markers or made the shaving a family event to take some of the scariness away. They reminded me that no matter what I'll still be his Mom.
So instead of hitting the salon again, I've asked Chris to do the honors and shave my head this weekend. Though I'm not sure I'm ready to let Q wield an electric razor, I figure he can watch me get my haircut and hope that will be easier on him than mysteriously waking up to my baldness.
All of this to say I've been pretty emotional this week about losing my hair, in large part because I'd really hoped to be done with this disease before Q started to form any lasting memories. To be clear: I mean I want to be HEALTHY for my son, that kind of "done with this disease," not gone before he has a chance to know me. And how twisted is it that I feel the need to un-jinx myself here, just in case the universe has some cruel shit up its sleeve? This is why I need Ativan, because some tiny part of me wonders if the cancer can actually hear me and has a mind of its own.
*****
I have my second dose of chemo tomorrow morning. God, I hope this is working.
Please, God, let it be killing the cancer as effectively.
*****
In the last couple of weeks, Quinn's language has really taken off. For starters, after months of calling both of us "Dada," he finally, finally said "Mama" last week. I love it, eat it up, ask him to repeat it at least ten times a day. He would rather say airplane, which he pronounces "up-pane," as he points his chubby little finger to the sky. Along with his new vocabulary, he's also really proud of his ability to locate his (and my) ears, nose, mouth, toes, belly and - you guessed it - hair. What will he think when my hair goes "bye-bye"?
Chris took a lint roller to the shirt I was wearing the other day to clean off some stray hairs; a few minutes later we found Quinn rolling the sticky tape over his own clothes, the little monkey. One of my biggest concerns this time around is how he's going to react to his mama being bald. Last fall, he was only six months old and oblivious to my lack of hair. So I asked around, and am reminded again of the fierceness and warmth and beauty of the women who've been through this. The general consensus seems to be that it's easier on kids if they're involved in the process somehow; many women said they let their toddlers draw on their bald heads with washable markers or made the shaving a family event to take some of the scariness away. They reminded me that no matter what I'll still be his Mom.
So instead of hitting the salon again, I've asked Chris to do the honors and shave my head this weekend. Though I'm not sure I'm ready to let Q wield an electric razor, I figure he can watch me get my haircut and hope that will be easier on him than mysteriously waking up to my baldness.
All of this to say I've been pretty emotional this week about losing my hair, in large part because I'd really hoped to be done with this disease before Q started to form any lasting memories. To be clear: I mean I want to be HEALTHY for my son, that kind of "done with this disease," not gone before he has a chance to know me. And how twisted is it that I feel the need to un-jinx myself here, just in case the universe has some cruel shit up its sleeve? This is why I need Ativan, because some tiny part of me wonders if the cancer can actually hear me and has a mind of its own.
*****
I have my second dose of chemo tomorrow morning. God, I hope this is working.
Monday, August 13, 2012
Walking
A dear friend of mine has walked in the Avon Walk for Breast Cancer for a few years running now. She has raised thousands of dollars to support research and access to care for those who need it. And she has logged hundreds of miles to honor those of us fighting this disease.
At some point after my clear PET scan last December, I floated the idea of joining my friend and her team for this year's walk in Santa Barbara. A couple of months ago, I took the plunge and signed up, committing to raise at least $1,800 and walking more than 39 miles over two days the weekend of September 22nd. I got my t-shirt in the mail that says: I AM POWERFUL BOLD PASSIONATE UNSTOPPABLE. Then I got news of my recurrence, realized I'd be on chemo again, and called the folks at Avon to tell them I probably wouldn't be able to participate, although I did wear that t-shirt to my first treatment on this new course of chemo.
But the decision not to walk wasn't sitting right with me. I felt like somehow, if I didn't go through with it, it would be as if I was giving up on my fight altogether. So I sent my friend an email and asked if there was still space on her team. She responded immediately that she'd be honored to have me there with them.
I have less than six weeks to go until this walk, during which I'll have two more rounds of chemo. So I have no idea whether I'll be able to complete all 39 miles, but the good people at Avon have assured me they'll have shuttles available for people who are struggling and medical personnel on hand if anything goes awry. With that safety net in place, and approval from my oncologist to participate, I decided I have to do this.
Here's a link to my participant page, if you'd like to donate to my efforts. I might be crazy, but if stubbornness and determination have anything to do with beating cancer a second time, then I've got this in the bag. As always, thank you all for your continued love and support as I "Wage War on Stage Four," to quote another t-shirt.
At some point after my clear PET scan last December, I floated the idea of joining my friend and her team for this year's walk in Santa Barbara. A couple of months ago, I took the plunge and signed up, committing to raise at least $1,800 and walking more than 39 miles over two days the weekend of September 22nd. I got my t-shirt in the mail that says: I AM POWERFUL BOLD PASSIONATE UNSTOPPABLE. Then I got news of my recurrence, realized I'd be on chemo again, and called the folks at Avon to tell them I probably wouldn't be able to participate, although I did wear that t-shirt to my first treatment on this new course of chemo.
But the decision not to walk wasn't sitting right with me. I felt like somehow, if I didn't go through with it, it would be as if I was giving up on my fight altogether. So I sent my friend an email and asked if there was still space on her team. She responded immediately that she'd be honored to have me there with them.
I have less than six weeks to go until this walk, during which I'll have two more rounds of chemo. So I have no idea whether I'll be able to complete all 39 miles, but the good people at Avon have assured me they'll have shuttles available for people who are struggling and medical personnel on hand if anything goes awry. With that safety net in place, and approval from my oncologist to participate, I decided I have to do this.
Here's a link to my participant page, if you'd like to donate to my efforts. I might be crazy, but if stubbornness and determination have anything to do with beating cancer a second time, then I've got this in the bag. As always, thank you all for your continued love and support as I "Wage War on Stage Four," to quote another t-shirt.
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