God's Blessings in tangible ways...
For "secretion and excretion management." At work, I am the secretions gal. It's my job to make you cough and deep breathe, whether you want to or not. The care package came from a friend, neighbor, co-worker, who works on the urology and colo-rectal floor at the hospital. It was tp, paper towels, lysol, hand sanitizer wipes and kleenex, in bulk. And it was the best belly laugh for me! I love her sense of humor.
For the Freezer Fairy. My kids are oh-so-happy to have pizzas and breakfast sandwiches! I am oh-so-happy to tell them to fend for themselves sometimes!
For the Chemo care package - ipod loan, snacks, dvd player with a couple movies, books; I was set.
For random books of hope in the mail.
For my mom's help this week.
For baskets full of sunshine.
For another year with my husband.
Thursday, February 14, 2013
Wednesday, February 13, 2013
Ugh, that sucked! Round 1
Welcome to life post-chemo. Chemo was Friday. This is now Wednesday. My hair has changed texture already - no bueno, but it's gonna happen. My mind has been to mud and is on it's way back. Nothing tastes good, already. There is a vague nausea still, but crackers and water are my friend. My bones hurt - the neulasta keeping my blood counts up. I have no energy and still not sleeping well.
I made brownies yesterday... the first thing that has felt normal. I took Colby to school today... normal. The church ladies are eating out for lunch later... perhaps a waste of money for my appetite, but normal. I have a list of things to accomplish on the bathroom mirror... the ultimate dry erase board. Normal. The laundry is spinning and dishes waiting. Normal. No clue what to get Tom for his birthday. Sadly, normal.
The hair adventure tomorrow. The American Cancer Society wig lady. I will send my mom home tomorrow with my sister, and find life on our own again on Friday. No school for the kids, so a lazy day at home, minus the dentist x 2, Parisi speed school for Evan, and probably buddies to play with.
I made brownies yesterday... the first thing that has felt normal. I took Colby to school today... normal. The church ladies are eating out for lunch later... perhaps a waste of money for my appetite, but normal. I have a list of things to accomplish on the bathroom mirror... the ultimate dry erase board. Normal. The laundry is spinning and dishes waiting. Normal. No clue what to get Tom for his birthday. Sadly, normal.
The hair adventure tomorrow. The American Cancer Society wig lady. I will send my mom home tomorrow with my sister, and find life on our own again on Friday. No school for the kids, so a lazy day at home, minus the dentist x 2, Parisi speed school for Evan, and probably buddies to play with.
Saturday, February 9, 2013
Day 2 after chemo
Someone pointed out I was supposed to conserve energy today. Oops. I was awake and medicating by 7 am. Drugs are my friend, Folks! I just sat in Tom's big chair and snuggled with the TV and my phone. I watched C's swim lessons since I felt decent (ok, bag of crackers and bottle of water lever left my side!)
We made a short Walmart run and the boys wanted McD's, Can I not go in, please? I was done for by this point. They brought it back to the truck and ate. I was okay with that. Vanilla shake and a dozen or so fries for me. And some more ativan and a nap for the afternoon.
A girlfriend wants to get back into exercising. I could be her slow walker at this point. She has to find her own runner. We did walk a little over a mile just before dinner , and it felt good. We could walk and talk, and I wasn't too tired until the end, and she felt good - my pace didn't hold her back, yeah!
Dinner - loving the Women Of Faith girls cooking and their leftovers! Boys are farmed out, 1 temporary, 1 overnight, and Scout Sunday tomorrow at the Methodist church. Love me some church support, love me some Scouts, it will be a good day. And a nap-tastic afternoon again I imagine.
We made a short Walmart run and the boys wanted McD's, Can I not go in, please? I was done for by this point. They brought it back to the truck and ate. I was okay with that. Vanilla shake and a dozen or so fries for me. And some more ativan and a nap for the afternoon.
A girlfriend wants to get back into exercising. I could be her slow walker at this point. She has to find her own runner. We did walk a little over a mile just before dinner , and it felt good. We could walk and talk, and I wasn't too tired until the end, and she felt good - my pace didn't hold her back, yeah!
Dinner - loving the Women Of Faith girls cooking and their leftovers! Boys are farmed out, 1 temporary, 1 overnight, and Scout Sunday tomorrow at the Methodist church. Love me some church support, love me some Scouts, it will be a good day. And a nap-tastic afternoon again I imagine.
Chemo Day #1 & Scout Dinner
So here it finally was, and there it finally went. I did not wake up with my game face on, so was randomly tearful though the morning. Had to be there for the echo at 0645, they don't unlock doors & clock in til 0653. I was back by 0700, with a male scanner. I have a mix of make and female physician teams, and their Go-To Nurses are all women, and this is a women's disease, but it will be fine, I thought. He had the personality of a rock (learning point for me, as I am not always chatty with my patients!), and was very slow and er, thorough, maybe. Maybe just clueless. He told me when we were done that a nurse had to start an iv. Well, hello, if you had told me that a half hour ago, I would have put this nifty little numbing cream on my port. So they accessed my fresh and very tender port with no good stuff on it, and what we guess was a short needle, so scared me with a very sluggish blood return, thinking we were going to have problems and get that redone. Lots of tears of frustration, fear, worry, anger, generally pissed. In the end, got it done with an iv in my wrist.
Breakfast at the hospital cafe - one of their better meals of the day!
Onto the chemo doc - pet scan found a second questionable shadowing on the left breast. Well, we are treating it with chemo, and cutting it off anyway, and doing radiation. Treatment doesn't change, really. Been worried about my head. Switching words is too frequent for my comfort - I do it all the time. Adds new meaning to"listen to what I mean, not what I say." Found nothing exciting there, or anywhere else we weren't expecting. Woohoo!
Chemo time... had to wait just a little bit, not a big deal. Best guess is that at 38, I was the youngest patient there by 10 years. Or maybe I will look 10 years older at the end of this walk. As a 1st timer, we got a private room. Next time it will be in an 8 bay recliner area. We got a "This is Siteman Cancer" movie, a bag and a notebook. We all have mental places we can't go. I have a binder for Scouts, for coupons, my tupperware is matched & stacks neatly. My cancer papers are all over my kitchen bar, shoved in that small bag, or my billfold, or... so a project to work on to separate out the crap. From the cancer side of things, all have been good to us. I was settled down emotionally by this point, and ready to go. My port accessed easily (still tender ater numbed, but its only 2 days old!) with a longer needle and all is well with that. I got a saline premed, steroids, amend premed, then the red devil, as someone else called it. I called it kool-aid.
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Then the cytuximab, just another clear iv bag, more saline and we were done. There was a big snafu between neulasta and lunesta at the pharmacy, but we came home with the neulasta finally.
Tom was with me all day, except when I could have used him during the echo - I wend him to fill up the car before he got into the pay parking garage, and then they wouldn't let him back. My rational mind realized it was just an echo, but 1 1.2 hours later got long. I prayed for sweet babies and their folks, since they are much cuter on the screen than a lump of cancer cells or a beating heart that could be damaged by one of the chemo drugs.
The cancer day got us back home at 5 - several hours later than expected, and so much for that anticipated nap.
We switched gears by about 180 degrees and got our Scout Stuff on. Tom has several shirts to wear depending on what he is doing. He is Treasurer and Pack Trainer for the local group, leads RoundTable for the Cub Scout leaders in the district, is certified to run bb & archery range at day camps, and spends our summer vacations there. There are worse things, trust me! When I say vacation, he says"yes, dear, when and where dear." I try to respect his Scout commitments, he tries to take the boys to as much of his adult stuff as he can to make that a family event as well. I have lead our Tiger Cubs through their first year. We met all of our Tiger badge requirements in January, so I can give out patches in February. I turned them over to one of the other dads with all the support he is willing to use in our local committee, so my official scout jobs are done for the moment. Back to where i was going with all this... it was Scout (Boy, Cub, Adventurer) District Dinner Night. I knew Tom was getting an award of some sort a month (lifetime) ago, and needed to ind a babysitter. I did. I was determined to not let my day's craptasticness get in the way of Tom's 15 minutes of fame. I was oh so glad to see his sister-in-law there to talk to and sit with! The entire Scout world does not know my story, as most of them don't know me, but it was nice to sit at a table where they all knew my day was long and awful, and just help me get through this for my husband. And they did.
Tom's dad presented his Badge of Merit award:
He got involved about 45 years ago, and never really got un-involved, His role shifted to training adult scout leaders, but he loves to tell a story, and comes to tell a story of something to most of the scout camps when he is asked. He is tired and retired, but never completely retired or you are dead.
Scouts understands the commitment the adults make and sacrifices from family time, and includes the other spouse in the award. He got the plaque, knot for his shirt and the certificate, and I got the flowers. Someone commented on Facebook about how lovingly he is looking at me, no, he is looking at me to make sure I was still standing steady and not running for a bathroom to hurl in. And he knows that I much prefer to be behind the spotlight, not in front of it. It was a good night for him, and I am glad it turned out so well.
And 10 minutes after we got home, I took the good nausea and sleepy drugs and crashed for 12 hours!
Breakfast at the hospital cafe - one of their better meals of the day!
Onto the chemo doc - pet scan found a second questionable shadowing on the left breast. Well, we are treating it with chemo, and cutting it off anyway, and doing radiation. Treatment doesn't change, really. Been worried about my head. Switching words is too frequent for my comfort - I do it all the time. Adds new meaning to"listen to what I mean, not what I say." Found nothing exciting there, or anywhere else we weren't expecting. Woohoo!
Chemo time... had to wait just a little bit, not a big deal. Best guess is that at 38, I was the youngest patient there by 10 years. Or maybe I will look 10 years older at the end of this walk. As a 1st timer, we got a private room. Next time it will be in an 8 bay recliner area. We got a "This is Siteman Cancer" movie, a bag and a notebook. We all have mental places we can't go. I have a binder for Scouts, for coupons, my tupperware is matched & stacks neatly. My cancer papers are all over my kitchen bar, shoved in that small bag, or my billfold, or... so a project to work on to separate out the crap. From the cancer side of things, all have been good to us. I was settled down emotionally by this point, and ready to go. My port accessed easily (still tender ater numbed, but its only 2 days old!) with a longer needle and all is well with that. I got a saline premed, steroids, amend premed, then the red devil, as someone else called it. I called it kool-aid.
.JPG)
Then the cytuximab, just another clear iv bag, more saline and we were done. There was a big snafu between neulasta and lunesta at the pharmacy, but we came home with the neulasta finally.
Tom was with me all day, except when I could have used him during the echo - I wend him to fill up the car before he got into the pay parking garage, and then they wouldn't let him back. My rational mind realized it was just an echo, but 1 1.2 hours later got long. I prayed for sweet babies and their folks, since they are much cuter on the screen than a lump of cancer cells or a beating heart that could be damaged by one of the chemo drugs.
The cancer day got us back home at 5 - several hours later than expected, and so much for that anticipated nap.
We switched gears by about 180 degrees and got our Scout Stuff on. Tom has several shirts to wear depending on what he is doing. He is Treasurer and Pack Trainer for the local group, leads RoundTable for the Cub Scout leaders in the district, is certified to run bb & archery range at day camps, and spends our summer vacations there. There are worse things, trust me! When I say vacation, he says"yes, dear, when and where dear." I try to respect his Scout commitments, he tries to take the boys to as much of his adult stuff as he can to make that a family event as well. I have lead our Tiger Cubs through their first year. We met all of our Tiger badge requirements in January, so I can give out patches in February. I turned them over to one of the other dads with all the support he is willing to use in our local committee, so my official scout jobs are done for the moment. Back to where i was going with all this... it was Scout (Boy, Cub, Adventurer) District Dinner Night. I knew Tom was getting an award of some sort a month (lifetime) ago, and needed to ind a babysitter. I did. I was determined to not let my day's craptasticness get in the way of Tom's 15 minutes of fame. I was oh so glad to see his sister-in-law there to talk to and sit with! The entire Scout world does not know my story, as most of them don't know me, but it was nice to sit at a table where they all knew my day was long and awful, and just help me get through this for my husband. And they did.
Tom's dad presented his Badge of Merit award:
He got involved about 45 years ago, and never really got un-involved, His role shifted to training adult scout leaders, but he loves to tell a story, and comes to tell a story of something to most of the scout camps when he is asked. He is tired and retired, but never completely retired or you are dead.
Scouts understands the commitment the adults make and sacrifices from family time, and includes the other spouse in the award. He got the plaque, knot for his shirt and the certificate, and I got the flowers. Someone commented on Facebook about how lovingly he is looking at me, no, he is looking at me to make sure I was still standing steady and not running for a bathroom to hurl in. And he knows that I much prefer to be behind the spotlight, not in front of it. It was a good night for him, and I am glad it turned out so well.
And 10 minutes after we got home, I took the good nausea and sleepy drugs and crashed for 12 hours!
Thursday, February 7, 2013
Thankful Thursday
God's blessings, named and remembered...
A flexible dentist. You can't get your teeth cleaned during chemo, so they fit me in early and on short notice.
A great group of coworkers in 44icu Tuesday. The morning started out rough with a power outage that affected the hospital briefly, but the day got much better with some serious teamwork.
A basket of goodies - candle, hope figurine, notepad - cause I love love love lists, and the basket itself to corral the cancer cards that were taking over my kitchen.
A nurse that promised to medicate me well for all things cancer, and she has!
A husband that works when he wants to call in sick, at work and at home. He has put in some long hours feeling crummy, and I hope he gets to rest on Saturday.
A good song on the radio. When I had surgery several years ago, I was driving to work on a Sunday morning and listening to the tail end of the Mormon church service before the 6 am news came on the radio. Their last song was "It Is Well With My Soul." I was worried and anxious, and it was immediately calming, and I was settled with whatever the end results would be. I haven't found that "settled" feeling yet, but "Good To Be Alive" by Jason Gray was a great way to start my day on Tuesday.
Pink fingers and purple toes, and the Early Childhood teachers. It was so so hard to spend money on something as frivolous as a mani-pedi, when I know the bills will be rolling in and I am not working much. I have loved looking at my nails all week long, and thinking of the teachers that surprised me with that.
Spaghetti Pizza Crockpot Extraordinaire. One kid said "eh, it's all right." The other had 2 servings and asked for it for breakfast. In my world, that's a hit!
My taxi driver. She has walked the cancer walk with her son recently, and has been my go-to for the more basic questions and general venting. Thank you for spending port and pet day with me.
A flexible dentist. You can't get your teeth cleaned during chemo, so they fit me in early and on short notice.
A great group of coworkers in 44icu Tuesday. The morning started out rough with a power outage that affected the hospital briefly, but the day got much better with some serious teamwork.
A basket of goodies - candle, hope figurine, notepad - cause I love love love lists, and the basket itself to corral the cancer cards that were taking over my kitchen.
A nurse that promised to medicate me well for all things cancer, and she has!
A husband that works when he wants to call in sick, at work and at home. He has put in some long hours feeling crummy, and I hope he gets to rest on Saturday.
A good song on the radio. When I had surgery several years ago, I was driving to work on a Sunday morning and listening to the tail end of the Mormon church service before the 6 am news came on the radio. Their last song was "It Is Well With My Soul." I was worried and anxious, and it was immediately calming, and I was settled with whatever the end results would be. I haven't found that "settled" feeling yet, but "Good To Be Alive" by Jason Gray was a great way to start my day on Tuesday.
Pink fingers and purple toes, and the Early Childhood teachers. It was so so hard to spend money on something as frivolous as a mani-pedi, when I know the bills will be rolling in and I am not working much. I have loved looking at my nails all week long, and thinking of the teachers that surprised me with that.
Spaghetti Pizza Crockpot Extraordinaire. One kid said "eh, it's all right." The other had 2 servings and asked for it for breakfast. In my world, that's a hit!
My taxi driver. She has walked the cancer walk with her son recently, and has been my go-to for the more basic questions and general venting. Thank you for spending port and pet day with me.
Tuesday, February 5, 2013
Random Thoughts
I thought last week I needed a haircut. I think I will just wait.
How is it that we were down to one bottle of shampoo between both bathrooms? I bought 3 bottles. That should last til mid July, I think!
The cancer girl probably shouldn't take care of cancer patients.
Got a letter telling me my doctor didn't fill out the fmla forms correctly. I am sure I have signed consent for them to discuss my case with my doctor. So can't they just call my doctor directly and leave me out of it? Cause you told me my leave was approved yesterday.
My boys are full of hugs, and I love it!
My house is as clean and neat as I can make it. It will have to do. The joys of refinancing when you realize you are paying way too much interest if you aren't going to build as soon as planned. The basement window is trimmed out and the drywall is patched from an old bathroom repair.
My mom is coming on Thursday, and maybe this strong girl needs her mom more than I admit.
My sister is going wig-shopping with me next week. I am depressed by that thought, but looking for some laughs in trying wigs on. Should I go for long and black, or short and red, or ??? Crap, I don't want to work in a wig. And I have never been a hat girl. This bald thing is gonna suck. White girls don't wear wigs nearly as well as black girls do.
I haven't had sweets or much bread today. I am having toast and chocolate milk withdrawal. Stupid PET scan. And I will be cooking eggs (or something non-carb) at 4 am, because I am npo for my port at 5. But the PET instructions for 1 pm say to drink lots of non-sugared water. Hmm, who planned those on the same day?
The hubs is on his second round of prednisone and antibiotics now. That ain't good, Folks. I hope he feels better soon, cause he looks way worse off than me right now. Between the two of us, it's looking more like a pharmacy than a kitchen counter.
I should sleep well through both procedures tomorrow, as it is way past my bedtime.
How is it that we were down to one bottle of shampoo between both bathrooms? I bought 3 bottles. That should last til mid July, I think!
The cancer girl probably shouldn't take care of cancer patients.
Got a letter telling me my doctor didn't fill out the fmla forms correctly. I am sure I have signed consent for them to discuss my case with my doctor. So can't they just call my doctor directly and leave me out of it? Cause you told me my leave was approved yesterday.
My boys are full of hugs, and I love it!
My house is as clean and neat as I can make it. It will have to do. The joys of refinancing when you realize you are paying way too much interest if you aren't going to build as soon as planned. The basement window is trimmed out and the drywall is patched from an old bathroom repair.
My mom is coming on Thursday, and maybe this strong girl needs her mom more than I admit.
My sister is going wig-shopping with me next week. I am depressed by that thought, but looking for some laughs in trying wigs on. Should I go for long and black, or short and red, or ??? Crap, I don't want to work in a wig. And I have never been a hat girl. This bald thing is gonna suck. White girls don't wear wigs nearly as well as black girls do.
I haven't had sweets or much bread today. I am having toast and chocolate milk withdrawal. Stupid PET scan. And I will be cooking eggs (or something non-carb) at 4 am, because I am npo for my port at 5. But the PET instructions for 1 pm say to drink lots of non-sugared water. Hmm, who planned those on the same day?
The hubs is on his second round of prednisone and antibiotics now. That ain't good, Folks. I hope he feels better soon, cause he looks way worse off than me right now. Between the two of us, it's looking more like a pharmacy than a kitchen counter.
I should sleep well through both procedures tomorrow, as it is way past my bedtime.
Friday, February 1, 2013
De Plane, de plane
From "Fantasy Island," yes? That is reaching way back into my childhood!
So, de plane as I know it today...
In the next 7 days, I will work 3 of them, get a port and a pet scan, rest a day (probably only if I am tied down!), get an echo to check my baseline heart function, and start chemo. 2-3 weeks later, I lose my hair. 8 cycles of chemo for a total of 16 weeks. Then it's slice & dice, and 4 weeks of serious downtime. Then it's 6 weeks of radiation. Then it's 3 months of cooling-off for my skin. Then it's reconstruction, with another 4 weeks of serious downtime. That is my life, Folks, for about the next year.
I will work as I am able during chemo - probably just my weekends and nothing more. Maybe I can ditch the weekends and work some m-f during radiation. I am not sure I can stomach 12 out of 14 days in a row at the hospital, but I should be functional to work - just a matter of timing and making sure I have downtime and rest. That, though, is 6 months away.
My day started out rough - worried & anxious about the afternoon. Dealt with fmla folks - that is not fun. There is no category for "it's cancer, I'm doing the best I can, you figure out the dang paperwork!" I can't have an intermittent and a continuous leave open at the same time. Last week was filled out as continuous. Well, now it's intermittent. But I could turn it into continuous if they would like. That was followed with repetitive health history info that I don't think the onc doc even looked at. Most of it, they already had. Then don't waste my time and brain cells, Doc! BUT, then it was mani-pedi time. Some local ladies pooled together & paid for it, which just shocked me. More tears, but at least they were good tears. The toes are purple (my high school colors have always stuck with me!) and my fingers are pink, with glitter & a pink heart on the ring fingers. Valentine's, breast cancer, whatever you want the pink to stand for. Several hours with the doc, and dinner with the in-laws rounded out my day.
Here is to bedtime and a good weekend at work!
And Shaunery? You made me cry, here.
So, de plane as I know it today...
In the next 7 days, I will work 3 of them, get a port and a pet scan, rest a day (probably only if I am tied down!), get an echo to check my baseline heart function, and start chemo. 2-3 weeks later, I lose my hair. 8 cycles of chemo for a total of 16 weeks. Then it's slice & dice, and 4 weeks of serious downtime. Then it's 6 weeks of radiation. Then it's 3 months of cooling-off for my skin. Then it's reconstruction, with another 4 weeks of serious downtime. That is my life, Folks, for about the next year.
I will work as I am able during chemo - probably just my weekends and nothing more. Maybe I can ditch the weekends and work some m-f during radiation. I am not sure I can stomach 12 out of 14 days in a row at the hospital, but I should be functional to work - just a matter of timing and making sure I have downtime and rest. That, though, is 6 months away.
My day started out rough - worried & anxious about the afternoon. Dealt with fmla folks - that is not fun. There is no category for "it's cancer, I'm doing the best I can, you figure out the dang paperwork!" I can't have an intermittent and a continuous leave open at the same time. Last week was filled out as continuous. Well, now it's intermittent. But I could turn it into continuous if they would like. That was followed with repetitive health history info that I don't think the onc doc even looked at. Most of it, they already had. Then don't waste my time and brain cells, Doc! BUT, then it was mani-pedi time. Some local ladies pooled together & paid for it, which just shocked me. More tears, but at least they were good tears. The toes are purple (my high school colors have always stuck with me!) and my fingers are pink, with glitter & a pink heart on the ring fingers. Valentine's, breast cancer, whatever you want the pink to stand for. Several hours with the doc, and dinner with the in-laws rounded out my day.
Here is to bedtime and a good weekend at work!
And Shaunery? You made me cry, here.
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