Here's what I'm thinking. My husband has NO clue what it is like to live in the brain of a Mom. The things that keep me up at night, he blissfully sleeps through. I take care of the "management" of this family. I remember the kids' likes and dislikes (no, Brooklynn does not like mayo on her sandwich, how do you not know that yet?), I remember their schedules, I pay our bills and do our banking, I notice when we are on the last roll of toilet paper, I see grubby handprints all over the windows and light switches, I know that my kids are due for their eye exams and that their dentist appointments are next week, I remember how overdue we are for an oil change and I notice when we're almost driving on fumes, I know when the kids are on their last pair of socks and we'd better tackle the pile in the laundry room, I send out Christmas cards and wrap all the gifts, I plan the meals beyond his repertoire - frozen pizza, Subway, sandwiches, and mac and cheese... I know things behind the scenes that my husband doesn't seem to. Or is quite happy to remain oblivious to because they magically get taken care of. I have this constantly whirring Mom computer racing through my head that keeps track of this crap so that my husband doesn't have to. But suddenly, I feel like I need to let him into my brain. Because I honestly don't have room in my there right now for all the things that used to fit. I'm slipping in the Momanager department and need to help him step up and shine.
I quizzed him this morning. I need to start downloading my constantly whirring to-do list brain into his, so I thought I'd run a few basic knowledge questions by him.
What time does Sparks start?
- 5:30 - Well, wrong, it starts at 6, but at least if you go then you'll be early for the meetings.
What time does the kids' bell ring after school?"
- 3:05 - wrong, 2:53, but that was pretty close. I'll give you that one. Unless you have to pick them up. Then show up at 2:53 so they're not the last kids on the playground.
How do you register the girls for Girl Guides every September?
- Umm...phone Phoebe. She'll tell me how. LOL Okay, I'll give him that one, that would work.
How much did it cost to sign Connor up for Scouts this year?
- Too much. Okay, I'll give him that one, too!
What's the password for our email? Or hydro bill. Or Telus bill... or etc, because darnit, each password has to be slightly different.
- I don't know. I just pull up the email and it's saved on there. Maybe you should write that one down for me.
Who's our mortgage broker?
- The lady on the billboard. (Okay half points for that one)
And how do you get a hold of her?
- Drive to the billboard and copy down her number. (Alright, fine... I'll give him that, too)
Etc. etc.
He argued after the quiz, "See, we'd survive..."
Okay, I'll give him that,too. Yes, they'll survive. But I want them to thrive. And what I am learning that by micromanaging our marriage and family life for the past twenty years, is that I have actually done my husband a disservice. He has no clue what he is in for if I'm not around for the next 13 years to parent all of my kids through to adulthood. So, while I fully intend to fight this crap diagnosis until my body falls apart, there is a bit of a shift that needs to happen around here as a "just in case," because being a single dad to four kids is going to be the biggest slap in the face my husband has ever received.
So... I think I'm going to write him a manual. Of all things that I want him to know about running a household without me. Starting with easy stuff like, "where do I keep our will?" and "What's our online banking password," and "where would you find the kids' Care Cards and SIN numbers?" and "Where is the hot water shut off valve," and all of those things about this house that I selfishly have kept to myself. But not until January, because it's Christmas and that's another busy Mom time that I can't seem to delegate. (Picture my husband trying to be helpful with the duct-tape and Christmas bags - I am not joking, he goes through a lot of duct tape at Christmas trying to wrap gifts - and me rolling my eyes and saying, "Here, let me wrap that, you aren't doing it right..." instead of hand over hand showing him how the rest of the world wraps a gift)
It's not a novel, but it is a project. And it could be really enlightening and fun to do. I can picture it now, a giant binder with lovely colour coded dividers emblazoned with a clever title page like "How to be a Dad with a Mom Brain", or something like that. And 12 years from now, when I've beaten the odds and we stand there seeing our youngest off to University together, at least I'll know that I stopped assuming I have to keep track of everything and that it's okay to let some things go.
Now... where do I keep the binders?
Thursday, 13 December 2018
Tuesday, 4 December 2018
Random thoughts
So, much negativity, I thought maybe, while I'm feeling good, I'd update with a positive post.
Most exciting thing that happened today... my doctor has given me the go ahead to add salt to EVERYTHING! How often do you hear that from a medical professional? Yay!
What else is good?
My Christmas cards are done. My parcels are mailed. My tree is up and decorated. And the outside lights are lit. My shopping is about half done. One more day in the city should do it. I'm feeling like this is going to be a WAY better Christmas than last year. I've set the bar pretty low, I just have to stay out of the hospital to achieve that.
I've started actually using my to do lists and for the most part, the housework is under control. I'm still falling asleep on the couch during the day, but I've stopped beating myself up over it. A little bit of snoozing, a little bit of housework, a menu plan, drive the kids all over town from activity to activity, and then do it all over again the next day... I MIGHT be getting the hang of this "stay at home Mom" gig, finally.
The last couple of weeks were tough, physically. I ended up getting so dehydrated that my chemo was cancelled. So, I'm doing it tomorrow instead. Now I wish I hadn't enthusiastically written chemo in my planner in ink over the next couple of months because the cycle is a week off now and my beautiful planner has stuff crossed out in it. Still, now that I'm rehydrated, I'm feeling decent. And because I'm prone to dehydration on chemo, my doctor said to have as much salt as I want. Hah!
As for NaNoWriMo... well, I wrote just over 30,000 words. I didn't make it to 50K like I had intended. My last chemo cycle kicked my ass (literally) and I didn't have the energy to keep plugging away at a story I wasn't all that invested in. It's 30K words of fluff. It wasn't really heading anywhere. There is potential, but it really needs an outline. Ordinarily I'd be beating myself up for not "winning" this November, but I gave myself permission to walk away from the story and once I'd decided to fail, I stayed away from the story so that I wouldn't be tempted by it. I may take another look at it later, but not until the new year. One thing I did get out of the experience was that I can write while my kids are at school and enjoy the experience. So in January, after the holidays, I'm going to set a goal of writing and revising my novels at least three times a week. It'll keep me busy between chemo treatments and keep my mind active.
So, that's me. I'm going to make the best of this illness and assume that the chemo is going to buy me many years. Because that's how long my to do list is, years --- 8 novel drafts, umpteen unfinished scrapbooks, tons of unused wool to crochet, and most importantly, four kids to see grow up. So, I'm out of my funk and moving on... during the daylight hours, at least. Can't promise that the 3am insomniac me is going to be in the same space. But I'm going to try.
Most exciting thing that happened today... my doctor has given me the go ahead to add salt to EVERYTHING! How often do you hear that from a medical professional? Yay!
What else is good?
My Christmas cards are done. My parcels are mailed. My tree is up and decorated. And the outside lights are lit. My shopping is about half done. One more day in the city should do it. I'm feeling like this is going to be a WAY better Christmas than last year. I've set the bar pretty low, I just have to stay out of the hospital to achieve that.
I've started actually using my to do lists and for the most part, the housework is under control. I'm still falling asleep on the couch during the day, but I've stopped beating myself up over it. A little bit of snoozing, a little bit of housework, a menu plan, drive the kids all over town from activity to activity, and then do it all over again the next day... I MIGHT be getting the hang of this "stay at home Mom" gig, finally.
The last couple of weeks were tough, physically. I ended up getting so dehydrated that my chemo was cancelled. So, I'm doing it tomorrow instead. Now I wish I hadn't enthusiastically written chemo in my planner in ink over the next couple of months because the cycle is a week off now and my beautiful planner has stuff crossed out in it. Still, now that I'm rehydrated, I'm feeling decent. And because I'm prone to dehydration on chemo, my doctor said to have as much salt as I want. Hah!
As for NaNoWriMo... well, I wrote just over 30,000 words. I didn't make it to 50K like I had intended. My last chemo cycle kicked my ass (literally) and I didn't have the energy to keep plugging away at a story I wasn't all that invested in. It's 30K words of fluff. It wasn't really heading anywhere. There is potential, but it really needs an outline. Ordinarily I'd be beating myself up for not "winning" this November, but I gave myself permission to walk away from the story and once I'd decided to fail, I stayed away from the story so that I wouldn't be tempted by it. I may take another look at it later, but not until the new year. One thing I did get out of the experience was that I can write while my kids are at school and enjoy the experience. So in January, after the holidays, I'm going to set a goal of writing and revising my novels at least three times a week. It'll keep me busy between chemo treatments and keep my mind active.
So, that's me. I'm going to make the best of this illness and assume that the chemo is going to buy me many years. Because that's how long my to do list is, years --- 8 novel drafts, umpteen unfinished scrapbooks, tons of unused wool to crochet, and most importantly, four kids to see grow up. So, I'm out of my funk and moving on... during the daylight hours, at least. Can't promise that the 3am insomniac me is going to be in the same space. But I'm going to try.
Wednesday, 31 October 2018
Twenty-three minutes to go...
...until November!
Hell yeah! Time to get off my ass and do something for myself. Writing makes me feel good. So, I'm going to treat this as a job and while the kids are at school, I'm going to set aside some time every morning for me! Just to write. I signed up for Nanowrimo and have done it every year since 2009 and I have 7 unfinished novels sitting on my computer. Some are really good, some are kind of crap. Two are almost complete, the other 5 need a lot of work. But each one was so much fun to write. And who knows, maybe this will be the kickstart I need to develop a healthy, daily writing habit. If I can't go back to work, I should be writing instead.
So, Nanowrimo 2018, despite my funky mood, why not! Time to focus on something lighter for a change. I've got a tiny morsel of a plot idea. Let's see where it goes.
30 days
50,000 words
Unfinished draft #8, here I come!
Yay November... next to Christmas, my favourite time of year!
Hell yeah! Time to get off my ass and do something for myself. Writing makes me feel good. So, I'm going to treat this as a job and while the kids are at school, I'm going to set aside some time every morning for me! Just to write. I signed up for Nanowrimo and have done it every year since 2009 and I have 7 unfinished novels sitting on my computer. Some are really good, some are kind of crap. Two are almost complete, the other 5 need a lot of work. But each one was so much fun to write. And who knows, maybe this will be the kickstart I need to develop a healthy, daily writing habit. If I can't go back to work, I should be writing instead.
So, Nanowrimo 2018, despite my funky mood, why not! Time to focus on something lighter for a change. I've got a tiny morsel of a plot idea. Let's see where it goes.
30 days
50,000 words
Unfinished draft #8, here I come!
Yay November... next to Christmas, my favourite time of year!
Friday, 26 October 2018
Not so random thought...
I've had a poor attitude this week. Dwelling on the negative instead of embracing the positive. However, after an uniterrupted solid 8 hours sleep in which my brain actually shut down and let me rest, I'm in good head space today. I'm up, I'm showered, I've put a load of laundry in and I'm about to tackle the breakfast dishes. I feel like I've turned a bit of a corner. For today, at least.
But here's what I'm thinking.
My forties haven't been stellar, so far. And neither have the thirties or forties of some of my friends. Or the fifties and sixties of some of my family. A couple have gotten divorced. One has seen her spouse incarcarated. One is dealing with MS. Some are dealing with depression. One is on dialysis waiting for someone else to die so that he has a shot at life. And then there is the c-word. Cancer. I'm constantly amazed by how many of us are actually fighting for our lives. There is actually a lot of cancer in my family and my community. I keep meeting survivors. And fighters. And people that didn't make it as long as they would have liked. And it's sobering but also inspiring. But this week I've been focussed just on me. I'm not often self-absorbed, but this was the week for me. My pity party. I have incurable cancer. I am fighting for my life. And I'm determined to beat that diagnosis for as long as possible.
But why the hell should I have to?
We are all good people. I surround myself with good people. My friends and family are solid, lovely, good people. We've tried to live lives that, while not perfect, are pretty decent. We have good kids, supportive families, and solid friendships. And life has spat on us. Or shat on us. Whichever visual you prefer. And I can't help but wonder why. Why me? Why her? Why him? Whose ironic crap shoot dealt me this hand? Why not someone else for a change? Quit crapping on us, we're only so tough!
And then there are other people. Colossally arrogant, abusive, racist, downright lousy people. And they get to be in charge of the United States of America. How about sending a little shower of crap their way instead. Karma doesn't really seem to make sense right now. Just a random thought...
But here's what I'm thinking.
My forties haven't been stellar, so far. And neither have the thirties or forties of some of my friends. Or the fifties and sixties of some of my family. A couple have gotten divorced. One has seen her spouse incarcarated. One is dealing with MS. Some are dealing with depression. One is on dialysis waiting for someone else to die so that he has a shot at life. And then there is the c-word. Cancer. I'm constantly amazed by how many of us are actually fighting for our lives. There is actually a lot of cancer in my family and my community. I keep meeting survivors. And fighters. And people that didn't make it as long as they would have liked. And it's sobering but also inspiring. But this week I've been focussed just on me. I'm not often self-absorbed, but this was the week for me. My pity party. I have incurable cancer. I am fighting for my life. And I'm determined to beat that diagnosis for as long as possible.
But why the hell should I have to?
We are all good people. I surround myself with good people. My friends and family are solid, lovely, good people. We've tried to live lives that, while not perfect, are pretty decent. We have good kids, supportive families, and solid friendships. And life has spat on us. Or shat on us. Whichever visual you prefer. And I can't help but wonder why. Why me? Why her? Why him? Whose ironic crap shoot dealt me this hand? Why not someone else for a change? Quit crapping on us, we're only so tough!
And then there are other people. Colossally arrogant, abusive, racist, downright lousy people. And they get to be in charge of the United States of America. How about sending a little shower of crap their way instead. Karma doesn't really seem to make sense right now. Just a random thought...
Saturday, 20 October 2018
Fighting again
So... after three weeks of uncertainty, I am officially fighting again. Started chemo, plan B this week. And I am exhausted! Which is hopeful because it feels like my body is again doing something.
Last round of chemo was Folfox (flourouracil, leukovorin, and oxiliplatin). It was considered "curative." Needless to say, it failed me. This round of chemo is GIFFIRB (Flourouracil - or 5FU cause that's funnier - Leukovorin, Irinotecan, and Bevacuzamib - or Avastin) and is considered Palliative. The intention is not to cure, as this is considered incurable at that point, but to slow the growth of the new tumours and keep me comfortable for as long as my body will tolerate it. And since you all know how stubborn I can be... ;)
A bit of downer, yes. But no one has given me an expiry date and I have way to much on my plate to not assume that I'm going to be round for a few years yet, so here's to cocktail #2 being more successful than cocktail #1. If the fatigue I felt yesterday after disconnect is any sign, my body is going to fight this on overtime!
5FUs to you, cancer!
Last round of chemo was Folfox (flourouracil, leukovorin, and oxiliplatin). It was considered "curative." Needless to say, it failed me. This round of chemo is GIFFIRB (Flourouracil - or 5FU cause that's funnier - Leukovorin, Irinotecan, and Bevacuzamib - or Avastin) and is considered Palliative. The intention is not to cure, as this is considered incurable at that point, but to slow the growth of the new tumours and keep me comfortable for as long as my body will tolerate it. And since you all know how stubborn I can be... ;)
A bit of downer, yes. But no one has given me an expiry date and I have way to much on my plate to not assume that I'm going to be round for a few years yet, so here's to cocktail #2 being more successful than cocktail #1. If the fatigue I felt yesterday after disconnect is any sign, my body is going to fight this on overtime!
5FUs to you, cancer!
Sunday, 30 September 2018
Can't sleep
I'm awake. It's 6am. I've been up for well over an hour. I was hoping to find someone on FB to chat with, as I certainly can't phone anyone at this ungodly time of day. Even my dog won't get up and keep me company. I think this is the hardest part of this whole ordeal for me. Being alone with my thoughts in the dark of the night. It doesn't happen very often anymore. I've been feeling hopeful and eager to get on with my life. I've even embraced the stubbornly hanging on neuropathy as a quirky residual effect of what was, otherwise, not really that horrible of an experience with chemotherapy.
Yesterday I felt unreasonably optimistic. The autumn sun was out, the trees haven't yet shed their leaves. It's just stunning. It makes you feel immortal. I was googling things, reading statistics, looking up side effects, and thinking "all is not lost." The manic feeling started to wear off sometime during my nephew's birthday party as I watched my children patiently play with their toddler cousins and I wondered how many birthday parties stretch before me.
Right now, in the dark of the house, when I can't see out the windows and the only company is the buzz of the appliances, I feel less optimistic. I'm letting the darkness seep into my brain filling every recess with doubt and grief. It's keeping me awake. It's going to be a caffeine kind of a day for sure.
I had a reality check on Thursday morning. I went to the doctor to get the results of my post-chemo CT scan and to talk about my return to work and return to reality from this whirlwind blip on the radar of what I was fully prepared to write off as a bad chapter in an otherwise pleasant life. Turns out, I'm not over this. I'm not even remotely close to being out of the woods. I can't even see the trail for the trees. I have another tumour in my abdomen. And signs that cancer has spread throughout the lining of my abdomen. The chemotherapy didn't work. My cancer didn't respond the way the oncologist assumed that it would. I'm a carcinogenic enigma. And so, while I'm still dealing with after effects of the first rounds of chemotherapy, I'm facing the thought of further, more aggressive treatments. Of uncertainty. Of living the rest of my life with a chronic, incurable illness. And not knowing how long that might be.
Maybe I'll wake the dog up. We could go watch the sunrise and get that boost of Vitamin D that fueled me yesterday. If I can't sleep, neither should she!
Yesterday I felt unreasonably optimistic. The autumn sun was out, the trees haven't yet shed their leaves. It's just stunning. It makes you feel immortal. I was googling things, reading statistics, looking up side effects, and thinking "all is not lost." The manic feeling started to wear off sometime during my nephew's birthday party as I watched my children patiently play with their toddler cousins and I wondered how many birthday parties stretch before me.
Right now, in the dark of the house, when I can't see out the windows and the only company is the buzz of the appliances, I feel less optimistic. I'm letting the darkness seep into my brain filling every recess with doubt and grief. It's keeping me awake. It's going to be a caffeine kind of a day for sure.
I had a reality check on Thursday morning. I went to the doctor to get the results of my post-chemo CT scan and to talk about my return to work and return to reality from this whirlwind blip on the radar of what I was fully prepared to write off as a bad chapter in an otherwise pleasant life. Turns out, I'm not over this. I'm not even remotely close to being out of the woods. I can't even see the trail for the trees. I have another tumour in my abdomen. And signs that cancer has spread throughout the lining of my abdomen. The chemotherapy didn't work. My cancer didn't respond the way the oncologist assumed that it would. I'm a carcinogenic enigma. And so, while I'm still dealing with after effects of the first rounds of chemotherapy, I'm facing the thought of further, more aggressive treatments. Of uncertainty. Of living the rest of my life with a chronic, incurable illness. And not knowing how long that might be.
Maybe I'll wake the dog up. We could go watch the sunrise and get that boost of Vitamin D that fueled me yesterday. If I can't sleep, neither should she!
Thursday, 14 June 2018
Dosage reduction...
So yesterday was a bit interesting. At the beginning of every cycle (I am currently on cycle 9 of 12!) I have to answer a bunch of questions about side effects and whether or not I'm struggling with them. I've been handling the side effects really well. Some have gotten more prevalent and some (like the hair loss and jaw pain) have almost disappeared, so overall, things are going ok.
But when she asked about neuropathy (the numbness I've been experiencing) I was honest and told my nurse that my fingers are pretty much numb all the time now and were still numb yesterday from the last treatment two weeks ago. But I told her I could still do things like typing and sewing, it just felt a little funny, like they're asleep. Then I told her that that numbness had also moved into my feet and sometimes it hurt to walk a little.
So she consulted with the other nurse and they phoned a couple of oncologists to consult, and they decided to reduce my oxapilaten dosage. I had to go home for about an hour an a half while I waited for the pharmacy to remix my new dosage, so I didn't get home from the infusion until after the kids were home from school.
While I appreciate the lower toxicity going into my last four treatments, I'm having mixed feelings. I do feel like I can handle the numbness as I have been so far, and I worry that lower dosages might be less effective.
I'm sure it's all in my head... the nurses are the experts, not me.
Anyway, 9 almost down (get unhooked tomorrow), three to go. Then we will see what my upcoming scan shows.
And... shoutout to my cousin, Joy, who has been dealing with the after effects of her kidney cancer for the last several years and had emergency surgery for a brain tumour that her oncologist discovered in January. She's been going through radiation and chemo pills and has been officially given the "No evidence of disease" diagnosis. So, YAY JOY!
Wait for me, Joy, I'll be joining your survivor's club, soon! Feeling optimistic these days.
Laura
But when she asked about neuropathy (the numbness I've been experiencing) I was honest and told my nurse that my fingers are pretty much numb all the time now and were still numb yesterday from the last treatment two weeks ago. But I told her I could still do things like typing and sewing, it just felt a little funny, like they're asleep. Then I told her that that numbness had also moved into my feet and sometimes it hurt to walk a little.
So she consulted with the other nurse and they phoned a couple of oncologists to consult, and they decided to reduce my oxapilaten dosage. I had to go home for about an hour an a half while I waited for the pharmacy to remix my new dosage, so I didn't get home from the infusion until after the kids were home from school.
While I appreciate the lower toxicity going into my last four treatments, I'm having mixed feelings. I do feel like I can handle the numbness as I have been so far, and I worry that lower dosages might be less effective.
I'm sure it's all in my head... the nurses are the experts, not me.
Anyway, 9 almost down (get unhooked tomorrow), three to go. Then we will see what my upcoming scan shows.
And... shoutout to my cousin, Joy, who has been dealing with the after effects of her kidney cancer for the last several years and had emergency surgery for a brain tumour that her oncologist discovered in January. She's been going through radiation and chemo pills and has been officially given the "No evidence of disease" diagnosis. So, YAY JOY!
Wait for me, Joy, I'll be joining your survivor's club, soon! Feeling optimistic these days.
Laura
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