A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
Saturday, November 11, 2017
The Chemo Diaries
Chemo Diaries
For posterity I thought I’d write up a bit of what life was like after the second round of chemo. Just to remind myself, I looked back at how the first round went.
Round 1:
Day of chemo: High from the anti-nausea meds. No real effects of the chemo felt. I walked six laps around our yard (one square acre) grooving to the music on my old phone.
Day one after: Felt rundown, as if I were coming down with a cold or the flu. General tiredness. Left work after six hours.
Day two after: Still rundown, a little achy. Noticed my incision had started to seep a little. Ick. Worked nine hours this day.
Day three after: Woke up at 4am feeling blood/fluid running down my side from my incision. Totally stressed over this. Walked into my surgeon’s office as they opened that morning. They said was fine, normal, told me to keep it covered with gauze. At this point, I should have taken stock out in the gauze industry.
By Saturday, which would have been day four after chemo, I was feeling pretty good. I managed to go to the grocery store, take the girls to lunch and only had to rest a bit when we got home.
Round 2 was harder. So much harder.
Day of chemo: Not high at all from the anti-nausea meds. Bummer. Instead, the feelings of tiredness and general yuck started right after the infusion ended. Boooo!
Day one after: Woke up five times to pee in the night. Each time I laid back down I had to curl into a ball to try and settle my stomach. Managed to get through eight hours at work. Go me.
Day two after: Still tired, still achy, still sort of sick to my stomach. The anti-nausea pills my nurse prescribed help but not much. Weird taste (not exactly metallic) and what feels like a film in my mouth. Just all around feeling sort of gross. My hair started falling out today.
Day three after: Okay, so my stupid incision is bleeding…again. Not the normal day to day seepage but actual blood this time. Yeah, it must be the Friday after chemo. Damn it. Spent some time in the surgeon’s office again. This time, I’ve been advised to start packing gauze into my now-open wound. Yay. One more gross thing my poor husband has to do for me. Hair still thinning but not too bad yet.
Day four after: Still tired. Still queasy. Make it through lunch with my mom and Liv (Lyss is in Defiance for an honors choir.) Wore a hat to town even though hair isn’t too thin yet.
Day five after: Go to Defiance to watch Alyssa sing. She’s so beautiful. I love that she gets to do these things. I’m also so grateful that she has friends whose parents are so awesome to pick her up and take her to the practices for this sort of thing without me having to ask. I eat Lemon Heads and mints to counteract the feeling of yuck in my mouth. Indigestion is a near constant battle. Somehow, I managed to avoid heartburn through two pregnancies and now…it feels like chemo has decided to make up for that. Hair thinner still…wearing a hat constantly now.
Day six after: Took Olivia to a dentist appointment. While walking around the mall afterward with her, I was so tired. Needed to get some strawberry lemonade to buck up and get from one end of the mall to the other. Hair…still there but starting to get annoying.
Day seven after: Happy birthday to me. My hair is driving me freaking crazy. It’s poking and stabbing and just…ugh. Oh yes, and joy of joys, today was my first day of experiencing the dreaded diarrhea. Wheee!!! No birthday pie for me. So sad.
Day eight after: Okay, seriously with the hair. I can’t stand it. It’s everywhere, it’s stabby, it’s annoying. I’m approaching Gollum status. Not only is the heartburn still here and the occasional feeling of just yuck, this hair thing is making even the best moments feel icky. My mom offers to use Tom’s clippers and just cut it all off. We go for it and oh my goodness, the freedom I felt the moment she was done. There is still a very short bit of hair left, sort of like Velcro for my hats but it feels so much better I can’t even describe it. I still slept with a hat on because the ‘velcro’ hair still on my head kept catching on my pillow. But even that was not a bother considering I know longer have strands long enough to poke out my hats. I don’t have to clean out my hats when I get home. I can shower without feeling like I’m attempting to wash a shedding dog with piles of hair on my hands and in the bottom of the shower. Whew, just…relief.
Day nine after: Still moments of general tiredness or feeling less than great but mostly good.
And now we wait another week and a few days for the next chemo. Until then…
Friday, November 10, 2017
And Now For Something Different
Woah, I didn’t mean for this to become the all cancer, all chemo, all about me, all the time blog. Sorry. But wait, maybe not so sorry. I mean, this is MY blog and so, yes, I’m going to write what’s on my mind and these days, it really is pretty much all cancer, all chemo, all me, all the time.
Except when it isn’t.
I had parent/teacher conferences with Liv’s teachers yesterday.
They were basically what I expected.
She loves to read, she excels at spelling. She hates math. She needs a lot of supervision and yet…just the other day, she sat at her desk, her teacher sat six feet away at her own desk and Olivia worked on a project for twenty minutes without stopping to doodle. Olivia couldn’t not see if her teacher was anywhere nearby because her desk (O’s desk, that is) faces away from the teacher’s desk. They did that because Olivia and another classmate have bonded and if they can see each other, they giggle and act silly all day long. Now they’re back to back. Smart teachers!
(Tangent: The classmate that Liv has bonded with is in first grade. This makes sense to me because emotionally, I think that Liv is about 6 or 7 years old. So the first grader is her emotional peer. I take heart in this. It means she CAN connect with peers, they might just always be younger chronologically than she is. And that’s okay.)
She’s come a long way in the six or so weeks that she’s been in the smaller classroom. She’s working more independently (most of the time, we still get reports that she had a tough day and didn’t stay on task but they’re fewer and farther between.) Her handwriting has improved immensely. There is less doodling on her homework and classwork pages.
She’s still in the typical classroom for science and social studies. Her teachers wanted to pull her out for social studies but realized that if they did, she’d be getting pulled out often enough that it might raise some red flags with the state. So…no. We’re going to keep things as they are.
I mentioned that I’m actually okay with that because I truly believe that Olivia gets something, even if it’s very subtle, out of being around her typical, age-appropriate peers. It might not come through for years yet, but being with these kids, even for a couple of hours, during a couple of subjects, will help her in the long run. Sure, she might need extra help with the academics, but school is about more than the grades we get. Her teachers were both glad to hear that I felt that way because they agree.
I ended up spending twenty minutes with O’s newer teacher, the one who works with her most closely. Then I headed down to meet with the typical classroom teacher. She’s awesome and wanted me to understand that she wasn’t giving up on Olivia even though she’s only with her for two subjects.
I told her I understood that and never thought she didn’t want Liv in her classroom. I pointed out that Olivia is an enigma that we’re all still trying to figure out.
We talked about Liv for maybe ten minutes then she started asking me about my treatment.
It turns out she’d faced a cancer diagnosis not even a year ago and we compared notes about chemo and radiation and recovery. She didn’t have breast cancer, so her chemo was completely different. She never felt sick and didn’t lose her hair. But she was stage 3, which is SO SCARY and is currently doing very well.
And look at that, we came back full circle and are talking about me and cancer again. How about that?
Except when it isn’t.
I had parent/teacher conferences with Liv’s teachers yesterday.
They were basically what I expected.
She loves to read, she excels at spelling. She hates math. She needs a lot of supervision and yet…just the other day, she sat at her desk, her teacher sat six feet away at her own desk and Olivia worked on a project for twenty minutes without stopping to doodle. Olivia couldn’t not see if her teacher was anywhere nearby because her desk (O’s desk, that is) faces away from the teacher’s desk. They did that because Olivia and another classmate have bonded and if they can see each other, they giggle and act silly all day long. Now they’re back to back. Smart teachers!
(Tangent: The classmate that Liv has bonded with is in first grade. This makes sense to me because emotionally, I think that Liv is about 6 or 7 years old. So the first grader is her emotional peer. I take heart in this. It means she CAN connect with peers, they might just always be younger chronologically than she is. And that’s okay.)
She’s come a long way in the six or so weeks that she’s been in the smaller classroom. She’s working more independently (most of the time, we still get reports that she had a tough day and didn’t stay on task but they’re fewer and farther between.) Her handwriting has improved immensely. There is less doodling on her homework and classwork pages.
She’s still in the typical classroom for science and social studies. Her teachers wanted to pull her out for social studies but realized that if they did, she’d be getting pulled out often enough that it might raise some red flags with the state. So…no. We’re going to keep things as they are.
I mentioned that I’m actually okay with that because I truly believe that Olivia gets something, even if it’s very subtle, out of being around her typical, age-appropriate peers. It might not come through for years yet, but being with these kids, even for a couple of hours, during a couple of subjects, will help her in the long run. Sure, she might need extra help with the academics, but school is about more than the grades we get. Her teachers were both glad to hear that I felt that way because they agree.
I ended up spending twenty minutes with O’s newer teacher, the one who works with her most closely. Then I headed down to meet with the typical classroom teacher. She’s awesome and wanted me to understand that she wasn’t giving up on Olivia even though she’s only with her for two subjects.
I told her I understood that and never thought she didn’t want Liv in her classroom. I pointed out that Olivia is an enigma that we’re all still trying to figure out.
We talked about Liv for maybe ten minutes then she started asking me about my treatment.
It turns out she’d faced a cancer diagnosis not even a year ago and we compared notes about chemo and radiation and recovery. She didn’t have breast cancer, so her chemo was completely different. She never felt sick and didn’t lose her hair. But she was stage 3, which is SO SCARY and is currently doing very well.
And look at that, we came back full circle and are talking about me and cancer again. How about that?
Thursday, November 9, 2017
The Ever-Annoying State of My Hair
I am so ready for this to be done. My hair is awful.
I mean, I knew it was going to fall out. I was fine with that. I’ve made peace with it and it’s all good.
So can it just go now?
I mean, seriously, there is SO MUCH hair. And it’s everywhere. And it’s stabby and itchy and annoying.
I realize that in the grand scheme of things this is not that big a deal. I feel crappy at some point every single day. And yet, right this second, my hair and what feels like its s l o w descent to my bathroom floor feels like the biggest thing. Maybe because I know there’s something that can be done to fix it.
I need to go home, get my husband’s clippers, and buzz the crap out of the remaining ten strands of hair. That would get rid of the last stubborn few that are just waiting to stab me in the skull, attach themselves to my hats and just irritate the shit out of me.
I can’t control when I feel terrible. I can’t control the fact that I pee all the dang time. I can’t control the leg cramps that wake me up on a nightly (sometimes twice!) basis.
But I can take control of this hair situation.
And I’m going to. Because it needs to be over. It needs to be gone.
Then I’ll google how long it takes after finishing chemo for hair to start growing back.
Wheee!
I mean, I knew it was going to fall out. I was fine with that. I’ve made peace with it and it’s all good.
So can it just go now?
I mean, seriously, there is SO MUCH hair. And it’s everywhere. And it’s stabby and itchy and annoying.
I realize that in the grand scheme of things this is not that big a deal. I feel crappy at some point every single day. And yet, right this second, my hair and what feels like its s l o w descent to my bathroom floor feels like the biggest thing. Maybe because I know there’s something that can be done to fix it.
I need to go home, get my husband’s clippers, and buzz the crap out of the remaining ten strands of hair. That would get rid of the last stubborn few that are just waiting to stab me in the skull, attach themselves to my hats and just irritate the shit out of me.
I can’t control when I feel terrible. I can’t control the fact that I pee all the dang time. I can’t control the leg cramps that wake me up on a nightly (sometimes twice!) basis.
But I can take control of this hair situation.
And I’m going to. Because it needs to be over. It needs to be gone.
Then I’ll google how long it takes after finishing chemo for hair to start growing back.
Wheee!
Wednesday, November 8, 2017
Life Goes On
I’m putting off my next chemo.
It’s okay, though. I talked to the nurses at the Cancer Center, who then talked to the doctor and he approved my decision to delay the next round for a week.
It will probably seem trivial but I felt like it was important to wait a week before having the next one.
See, Alyssa’s choir trip to Chicago is the weekend of November 17. I was accepted at a chaperone before I was even diagnosed, before surgery, before chemo. Before…
We paid for both Alyssa’s and my costs for the trip. We’ve had this planned for months. I’m going to room with Nora’s and Tasha’s moms. It’s going to be awesome.
Except, it almost wasn’t because I was originally scheduled to have chemo on November 14, just three days before we boarded the bus and headed to Chicago for two days and a night of shows and walking and eating and socializing.
And I knew that if I had the chemotherapy on the 14th, I was going to be miserable to the point of possibly not even going. I mean, what’s the point if I couldn’t walk more than a block without needing to rest or not being able to eat due to nausea and just a general feeling of yuck?
So I talked to the nurses, explaining the situation. They were sympathetic and the doctor made the final call, which was that it wouldn’t hurt me or my chemo schedule to put it off for a week. So yay.
Tom questioned whether this was a good idea.
I pointed out that the whole reason we’re doing this is because I want to live. I want to be here for my girls. I want to be here this week, and next month and in 2021 and when they find partners and if they decide to have babies. I want to live.
And I need to continue living right now as much as I can. Going on this trip makes the chemo that I’ll have the week of Thanksgiving worth it. It makes everything more clear, it makes me remember why I’m suffering through the effects of chemo.
Because I want to live.
It’s okay, though. I talked to the nurses at the Cancer Center, who then talked to the doctor and he approved my decision to delay the next round for a week.
It will probably seem trivial but I felt like it was important to wait a week before having the next one.
See, Alyssa’s choir trip to Chicago is the weekend of November 17. I was accepted at a chaperone before I was even diagnosed, before surgery, before chemo. Before…
We paid for both Alyssa’s and my costs for the trip. We’ve had this planned for months. I’m going to room with Nora’s and Tasha’s moms. It’s going to be awesome.
Except, it almost wasn’t because I was originally scheduled to have chemo on November 14, just three days before we boarded the bus and headed to Chicago for two days and a night of shows and walking and eating and socializing.
And I knew that if I had the chemotherapy on the 14th, I was going to be miserable to the point of possibly not even going. I mean, what’s the point if I couldn’t walk more than a block without needing to rest or not being able to eat due to nausea and just a general feeling of yuck?
So I talked to the nurses, explaining the situation. They were sympathetic and the doctor made the final call, which was that it wouldn’t hurt me or my chemo schedule to put it off for a week. So yay.
Tom questioned whether this was a good idea.
I pointed out that the whole reason we’re doing this is because I want to live. I want to be here for my girls. I want to be here this week, and next month and in 2021 and when they find partners and if they decide to have babies. I want to live.
And I need to continue living right now as much as I can. Going on this trip makes the chemo that I’ll have the week of Thanksgiving worth it. It makes everything more clear, it makes me remember why I’m suffering through the effects of chemo.
Because I want to live.
Friday, November 3, 2017
Chronically Gross
Here’s the thing about chemotherapy…it attacks the fastest growing cells first; which is why it works so well at killing cancer cells. Those suckers grow like crazy. But hair and skin are also fast growing cells, which again, is why hair falls out and skin breaks down.
Scar tissue is, duh, skin. So yeah.
I had chemo on Tuesday. By Thursday, my incision was oozing. It’s gross. I saw my surgeon yesterday. He packed the incision with gauze (again…GROSS!) and put me on two antibiotics and some probiotics for the next ten days.
He also wants Tom to pack my incision each day with new gauze. Poor Tom.
Thankfully, he’s not all that squeamish. He’s more worried about hurting me than about the grossness of the process of packing the incision. But still, so gross. (And for the record, he didn’t hurt me, he was very gentle.)
I know this is just par for the course. We just have to keep on keeping on and next week will be better. My energy will come back, my incision will stop seeping. I will sleep better and my stomach won’t hurt all the time.
I know all this logically but while I sit here with the corner of a gauze pad stuffed inside an opening in my body (seriously, SO FREAKING GROSS) and know that for the next ten or so days, my dear, loving, kind, generous, over-worked husband will have to replace that gauze daily, well, I’m just feeling a little sorry for myself.
It must be the Friday after chemo.
Scar tissue is, duh, skin. So yeah.
I had chemo on Tuesday. By Thursday, my incision was oozing. It’s gross. I saw my surgeon yesterday. He packed the incision with gauze (again…GROSS!) and put me on two antibiotics and some probiotics for the next ten days.
He also wants Tom to pack my incision each day with new gauze. Poor Tom.
Thankfully, he’s not all that squeamish. He’s more worried about hurting me than about the grossness of the process of packing the incision. But still, so gross. (And for the record, he didn’t hurt me, he was very gentle.)
I know this is just par for the course. We just have to keep on keeping on and next week will be better. My energy will come back, my incision will stop seeping. I will sleep better and my stomach won’t hurt all the time.
I know all this logically but while I sit here with the corner of a gauze pad stuffed inside an opening in my body (seriously, SO FREAKING GROSS) and know that for the next ten or so days, my dear, loving, kind, generous, over-worked husband will have to replace that gauze daily, well, I’m just feeling a little sorry for myself.
It must be the Friday after chemo.
Thursday, November 2, 2017
The Kindness of Friends
As noted in yesterday’s chemo diary, I received a hat in the mail from Julie just this past Saturday. It was much appreciated.
I have been so blessed to have some amazing friends, far and near, as my family and I go through this whole cancer diagnosis, surgery, chemo thing.
Julie has sent me some awesome gifts, usually arriving just when I need them, even though I didn’t know I needed them until they arrived in my mailbox or on my doorstep. Her kindness, thoughtfulness, generosity humbles me.
The parents of some of Alyssa’s friends have shown so much kindness during this time. Their willingness to step up and do things that I simply can’t do right now shows so much grace and makes me want to be a better person.
The Porch family has brought Alyssa home from more football games in the past couple of months than I can count. Sure, we’re only a mile out of their way but still…I have never once had to ask them to do this, Mrs. Porch has just called or texted the day of the game and informed me, “We’ll be bringing Alyssa home tonight, stay in, stay warm.”
So kind. So sweet. It brings tears to my eyes.
This coming weekend Alyssa has an honors choir thing in Defiance, Ohio (about an hour drive from our town.) On Monday, Alyssa’s friend Serena’s mom texted me and said she’d gotten together with another friend’s mom. They’d decided that Serena’s mom would take the girls to the Saturday morning practice and Tessa’s mom would bring them all home. That same afternoon, Tessa’s mom texted to suggest that Lyss go home with Tessa after school and she’d (the mom) take the girls to Defiance for the Thursday practice.
All I have to do is rest and stay healthy enough to attend the performance in Defiance on Sunday afternoon.
I am blown away by how much everyone is doing for us. These little things mean the world when you’re feeling gross and tired and, at times, completely overwhelmed by all that needs to be done and the energy to do none of it.
Now…if someone would just come and clean my bathrooms...
I have been so blessed to have some amazing friends, far and near, as my family and I go through this whole cancer diagnosis, surgery, chemo thing.
Julie has sent me some awesome gifts, usually arriving just when I need them, even though I didn’t know I needed them until they arrived in my mailbox or on my doorstep. Her kindness, thoughtfulness, generosity humbles me.
The parents of some of Alyssa’s friends have shown so much kindness during this time. Their willingness to step up and do things that I simply can’t do right now shows so much grace and makes me want to be a better person.
The Porch family has brought Alyssa home from more football games in the past couple of months than I can count. Sure, we’re only a mile out of their way but still…I have never once had to ask them to do this, Mrs. Porch has just called or texted the day of the game and informed me, “We’ll be bringing Alyssa home tonight, stay in, stay warm.”
So kind. So sweet. It brings tears to my eyes.
This coming weekend Alyssa has an honors choir thing in Defiance, Ohio (about an hour drive from our town.) On Monday, Alyssa’s friend Serena’s mom texted me and said she’d gotten together with another friend’s mom. They’d decided that Serena’s mom would take the girls to the Saturday morning practice and Tessa’s mom would bring them all home. That same afternoon, Tessa’s mom texted to suggest that Lyss go home with Tessa after school and she’d (the mom) take the girls to Defiance for the Thursday practice.
All I have to do is rest and stay healthy enough to attend the performance in Defiance on Sunday afternoon.
I am blown away by how much everyone is doing for us. These little things mean the world when you’re feeling gross and tired and, at times, completely overwhelmed by all that needs to be done and the energy to do none of it.
Now…if someone would just come and clean my bathrooms...
Wednesday, November 1, 2017
Chemo #2
I was not high yesterday after chemo. Nope, instead I just felt yucky. Yes, yucky. Apparently chemotherapy turns me into a four year old.
I had to get up five times, FIVE TIMES, to pee last night and each time I got back into bed, I had to curl into a ball to try and sooth my stupid stomach, which was queasy but not quite puky.
I went to bed at 9:30 and woke up at 11:35 sweating like it was 85 degrees in my house. For the record, it was 67 degrees. To be fair, I did have a sheet, a comforter and two quilts covering me, so that’s probably a big part of the disgusting sweat. I tossed off all but a sheet and a quilt, turned on a small fan by my bed and rest for about an hour before having to pee again.
Today, the day after the second chemo, is better than yesterday. I don’t feel as sick or as tired. We’ll see how the day goes.
Big news…my hair is falling out. I can stand over a trashcan and run my hands through my hair and see the strands dropping. We’ll see how long it takes to all fall out. Here today, gone tomorrow? I have a hat in my bag (the one Julie sent me all the way from Indianapolis!) in my bag should the hair just suddenly decide to vacate my head and I have to leave work bald. At least my head won’t be cold.
I had to get up five times, FIVE TIMES, to pee last night and each time I got back into bed, I had to curl into a ball to try and sooth my stupid stomach, which was queasy but not quite puky.
I went to bed at 9:30 and woke up at 11:35 sweating like it was 85 degrees in my house. For the record, it was 67 degrees. To be fair, I did have a sheet, a comforter and two quilts covering me, so that’s probably a big part of the disgusting sweat. I tossed off all but a sheet and a quilt, turned on a small fan by my bed and rest for about an hour before having to pee again.
Today, the day after the second chemo, is better than yesterday. I don’t feel as sick or as tired. We’ll see how the day goes.
Big news…my hair is falling out. I can stand over a trashcan and run my hands through my hair and see the strands dropping. We’ll see how long it takes to all fall out. Here today, gone tomorrow? I have a hat in my bag (the one Julie sent me all the way from Indianapolis!) in my bag should the hair just suddenly decide to vacate my head and I have to leave work bald. At least my head won’t be cold.
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