Olivia still has some issues with speaking. She probably always will but we’re working on it along with finding other ways for her to communicate.
At school, her teachers/therapists/peers all accept a smile and a wave as communication. She doesn’t have to speak to acknowledge that someone has spoken to her.
This past weekend, she spilled some water.
No big deal, except it was a mess I had to clean up. Thank goodness for my over-inflated sense of guilt, I didn’t blow up and make a bigger deal out of it than it was. But I did want her to apologize for me for making a mess that I had to clean up.
She looked at me like I’d asked her to recite the German alphabet (which, let me tell you, isn’t that hard.)
I was still cleaning up the water (it had gone under the recliner, which was annoying and a little harder to clean up than your typical spill on, say, a kitchen floor.) She stood there looking at me like I was asking her to speak fluent Martian.
I said, “All I’m asking if that you tell me you’re sorry.”
She blinked.
“Liv,” I muttered, still on my damn knees sopping up water. “It’s two words. I’m…sorry.”
She took a deep breath and said nothing.
“Okay,” I relented. “You can be back on the computer when you’ve apologized for this mess.”
She tilted her head as if my words did not compute.
I finally got the water soaked up and put the towel in the dirty laundry basket. I walked up to her, she was still in the same spot she’d been in when I first asked her to apologize. It was as if my request had forced her entire system to freeze.
I needed to figure out how to reboot her.
I put my hands on her cheeks and said, “Just whisper it to me. It’s just you and me here, you talk to me all the time, just two words. Heck, just one word. Just whisper ‘sorry’ to me and we can be done with this.”
She pressed her lips together.
I know there are people out there who will think she’s playing me. I know people think she’s capable of so much more than I require of her. I know this too. But I also know that sometimes, she just can’t force words past her throat. It’s as if she’s choking on them. I think that might actually be exactly what selective mutism is. She can’t do it, especially when she’s put on the spot, like I did that night.
I finally had her spell out the word ‘sorry’ to me using sign language. And then I let her play on the computer again. She communicated in the best way she could at the moment and it was fine.
She has a hard time with most of the social niceties. She can’t bring herself to say ‘thank you’ or ‘you’re welcome’. She has a really hard time with hello but can scream goodbye to her dad when he won’t close the car door until she does.
It’s like the part of her brain that controls social interaction has a major block. We’re working on finding ways around that block but it’s definitely a work in process.
It’s a fine line for me as I continue to push her and yet try and let her be herself. She wants so badly to be a part of conversations but has a tough time following the main subject. She’s a lot like a four year old who wants the focus on her and whenever there is a break in the conversation, will try and bring it back around to whatever subject interests her.
I have faith that we’ll get there, we just have to be patient even when we’re pushing her to try a little harder and find a new way around that block in her beautiful brain.
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.
Wednesday, October 31, 2018
Tuesday, October 30, 2018
Inquiring Minds
My MRI results came back. It’s all good. The thick skin and hardness of the breast tissue itself is due to damage from both the original lumpectomy and from the radiation. No sign of cancer recurrence at this time.
I’m sure you can imagine the relief I feel.
I’m sure you can imagine the relief I feel.
Monday, October 29, 2018
The MRI
So as stated in Friday's post, my insurance approved the MRI. I headed over to the hospital at 2:00 Friday afternoon.
Just walking into the hospital was, weirdly, like coming home. I mean, I was there SO MUCH over the past year. Every single Saturday for three months, I went to that hospital for a blood draw to make sure my counts were high enough to receive chemo. After chemo, I was on the hospital campus for radiation daily for almost seven weeks.
I won't go so far as to say I miss treatment but there was a weird sense of comfort in going in there, knowing we were doing something to either find new cancer early or make sure there is no more cancer. for the past five plus months, I've had no doctors' appointments, no treatments, nothing to fight any cancer that has started growing again. Obviously, I have all the hope in the world that there is nothing to be found, but knowing we were looking for it made me feel...I hesitate to say good but, maybe, comforted?
I hope not to hear from my doctor any time soon. I have a follow up appointment with him in mid November. I know that the MRI will be read Monday or Tuesday. If there is anything found, I know they'll call me before my appointment. I really, REALLY hope I don't hear from them and just head to my regularly scheduled appointment and find out that the MRI found nothing. Prayers are appreciated, obviously.
I do have an appointment with my chemo oncologist on Tuesday. I don't think he gets my humor but that's okay. I will be me, probably wise-cracking and being stupid but I can't help it. I think maybe he doesn't think I take this whole thing seriously but I can't. I can't go in there all morose and sad. I have to be positive, happy, joking around about my stupid hair and hoping, praying, planning for the best.
I don't know if they'd send him the MRI results or now, but I guess we'll see.
So yeah, after over five months with only one appointment (the surgeon in August) I'll see several doctors/therapists/technicians over the span of the next few weeks. It's taking me back, but not necessarily in a bad way. It feels like everyone cares again.
Weird? Maybe. But maybe not so unusual. A dear friend who battled cancer back in the last 1990s warned me that after treatment, she felt bereft, like she was being left to flounder and figure out life after treatment. I appreciated her wise words of warning. It makes me feel less freakish.
I have often in the past couple of months felt regret in doing the lumpectomy. I have thought maybe I should have gone with the mastectomy just to get rid of the offending bosom. I mean, what I do need these stupid boobs for? They weren't even capable of feeding my children over ten years ago. They're obsolete and they (well, Leftie) tried to kill me. I think maybe I should have opted to have them lopped off.
Live and learn, right? I just hope and pray that for me, it's not die and learn.
Just walking into the hospital was, weirdly, like coming home. I mean, I was there SO MUCH over the past year. Every single Saturday for three months, I went to that hospital for a blood draw to make sure my counts were high enough to receive chemo. After chemo, I was on the hospital campus for radiation daily for almost seven weeks.
I won't go so far as to say I miss treatment but there was a weird sense of comfort in going in there, knowing we were doing something to either find new cancer early or make sure there is no more cancer. for the past five plus months, I've had no doctors' appointments, no treatments, nothing to fight any cancer that has started growing again. Obviously, I have all the hope in the world that there is nothing to be found, but knowing we were looking for it made me feel...I hesitate to say good but, maybe, comforted?
I hope not to hear from my doctor any time soon. I have a follow up appointment with him in mid November. I know that the MRI will be read Monday or Tuesday. If there is anything found, I know they'll call me before my appointment. I really, REALLY hope I don't hear from them and just head to my regularly scheduled appointment and find out that the MRI found nothing. Prayers are appreciated, obviously.
I do have an appointment with my chemo oncologist on Tuesday. I don't think he gets my humor but that's okay. I will be me, probably wise-cracking and being stupid but I can't help it. I think maybe he doesn't think I take this whole thing seriously but I can't. I can't go in there all morose and sad. I have to be positive, happy, joking around about my stupid hair and hoping, praying, planning for the best.
I don't know if they'd send him the MRI results or now, but I guess we'll see.
So yeah, after over five months with only one appointment (the surgeon in August) I'll see several doctors/therapists/technicians over the span of the next few weeks. It's taking me back, but not necessarily in a bad way. It feels like everyone cares again.
Weird? Maybe. But maybe not so unusual. A dear friend who battled cancer back in the last 1990s warned me that after treatment, she felt bereft, like she was being left to flounder and figure out life after treatment. I appreciated her wise words of warning. It makes me feel less freakish.
I have often in the past couple of months felt regret in doing the lumpectomy. I have thought maybe I should have gone with the mastectomy just to get rid of the offending bosom. I mean, what I do need these stupid boobs for? They weren't even capable of feeding my children over ten years ago. They're obsolete and they (well, Leftie) tried to kill me. I think maybe I should have opted to have them lopped off.
Live and learn, right? I just hope and pray that for me, it's not die and learn.
Friday, October 26, 2018
Insurance
I’m supposed to have a breast MRI today. Wait. Let’s back up. I was supposed to have a breast MRI last Friday. Alas, it was rescheduled due to insurance not deeming it necessary and wanting a peer to peer consult with my doctor. And now I’m waiting to find out if the peer to peer review changes their (the insurance company’s) opinion on whether the test is medically necessary.
Huh.
Insurance companies kind of suck. I realize they’re a business but honestly, those in charge probably have no idea what an actual person experiences when they go through what I went through in the past year.
I am not saying my experience with cancer and the treatments and tests and recovery and the subsequent fears and worries and stressors are worse than anyone else who has been through this. In fact, I’m pretty sure my experience has been fairly typical.
But I don’t think insurance companies get it. Those in charge seem to take the human factor out of the equation and only worry about the dollar signs.
It makes me sad and it makes me mad.
Can you put a price on peace of mind?
A person shouldn’t have to go into debt to get and stay healthy, both physically and emotionally/mentally.
Back to the MRI. I saw my surgeon back in August. He did his usual exam and decided that since Leftie is still swollen and the skin is firmer than Rightie, an MRI should be done. See, we can’t actually feel much in Leftie because of the firmness of the skin and the swelling from everything it’s been through. A physical exam doesn’t do much to detect any potential bad stuff. My surgeon is great. My insurance…is not.
They are saying that since I haven’t had any other test, other than a physician’s exam, to give us reason to think something might be wrong, the MRI isn’t necessary.
Let’s stop for a minute and think about this. My insurance doesn’t think we have any reason to think something might be wrong. Even though I just went through what was quite possibly the worst year of my life. Even though I’ve HAD A FREAKIKNG CANCER DIAGNOSIS, they don’t think there’s a valid reason to pay for an MRI.
The insanity of that makes me want to scream. Would they rather pay for an MRI that could detect something early enough to necessitate another lumpectomy or wait and later pay for a freaking double mastectomy because I’m telling you, if I have another cancer diagnosis, that’s where we’re going. I’m getting both Leftie and Rightie lopped right the hell off and then insurance can pay for reconstruction along with the surgery to get rid of these two abominations hanging from my chest.
Whew. Okay, deep breath.
I don’t currently know the final decision. I guess I should call the f*#^ down and wait to hear from someone, be it my doctor’s office, the imaging center’s scheduling department or, heaven forbid, my insurance company. They never bother actually communicating with ME, the actual patient who is enduring all their bullshit.
I’m good most of the time with being all positive and planning for my 50th birthday, which will be a big one since it will be three years from the time of diagnosis and if I get to three years without the cancer coming back, my chances of ever coming back are very slim. (See: Triple Negative Breast Cancer statistics.) But sometimes, mostly at night, in the dark when I’m hurting somewhere in my body I’m convinced that it’s already back, that the day after we stopped chemo, the cancer started growing again, either back in Leftie or somewhere in Rightie or even down in my lower back, on the right where it just aches sometimes. I’m just sure I only have a couple more years with my girls and I need to get as much loving and living in while I can, while I’m not spitting up blood and losing my hair again and slow (or quickly, depending on how depressing I want to be) declining, sleeping more and more, slipping away from everyone and everything I love.
They need me to be strong. They need me to be HERE, with them, guiding them, loving them, making them laugh, making memories that will sustain them even if the worst happens.
And if it takes a freaking MRI to keep me here, then damn it, my stupid insurance company needs to get with the program.
End rant.
Update: The MRI was approved. I know! I was shocked too. And impressed with my doctor's persuasive abilities. I pray that if the MRI finds anything, it's early, like last time...
Huh.
Insurance companies kind of suck. I realize they’re a business but honestly, those in charge probably have no idea what an actual person experiences when they go through what I went through in the past year.
I am not saying my experience with cancer and the treatments and tests and recovery and the subsequent fears and worries and stressors are worse than anyone else who has been through this. In fact, I’m pretty sure my experience has been fairly typical.
But I don’t think insurance companies get it. Those in charge seem to take the human factor out of the equation and only worry about the dollar signs.
It makes me sad and it makes me mad.
Can you put a price on peace of mind?
A person shouldn’t have to go into debt to get and stay healthy, both physically and emotionally/mentally.
Back to the MRI. I saw my surgeon back in August. He did his usual exam and decided that since Leftie is still swollen and the skin is firmer than Rightie, an MRI should be done. See, we can’t actually feel much in Leftie because of the firmness of the skin and the swelling from everything it’s been through. A physical exam doesn’t do much to detect any potential bad stuff. My surgeon is great. My insurance…is not.
They are saying that since I haven’t had any other test, other than a physician’s exam, to give us reason to think something might be wrong, the MRI isn’t necessary.
Let’s stop for a minute and think about this. My insurance doesn’t think we have any reason to think something might be wrong. Even though I just went through what was quite possibly the worst year of my life. Even though I’ve HAD A FREAKIKNG CANCER DIAGNOSIS, they don’t think there’s a valid reason to pay for an MRI.
The insanity of that makes me want to scream. Would they rather pay for an MRI that could detect something early enough to necessitate another lumpectomy or wait and later pay for a freaking double mastectomy because I’m telling you, if I have another cancer diagnosis, that’s where we’re going. I’m getting both Leftie and Rightie lopped right the hell off and then insurance can pay for reconstruction along with the surgery to get rid of these two abominations hanging from my chest.
Whew. Okay, deep breath.
I don’t currently know the final decision. I guess I should call the f*#^ down and wait to hear from someone, be it my doctor’s office, the imaging center’s scheduling department or, heaven forbid, my insurance company. They never bother actually communicating with ME, the actual patient who is enduring all their bullshit.
I’m good most of the time with being all positive and planning for my 50th birthday, which will be a big one since it will be three years from the time of diagnosis and if I get to three years without the cancer coming back, my chances of ever coming back are very slim. (See: Triple Negative Breast Cancer statistics.) But sometimes, mostly at night, in the dark when I’m hurting somewhere in my body I’m convinced that it’s already back, that the day after we stopped chemo, the cancer started growing again, either back in Leftie or somewhere in Rightie or even down in my lower back, on the right where it just aches sometimes. I’m just sure I only have a couple more years with my girls and I need to get as much loving and living in while I can, while I’m not spitting up blood and losing my hair again and slow (or quickly, depending on how depressing I want to be) declining, sleeping more and more, slipping away from everyone and everything I love.
They need me to be strong. They need me to be HERE, with them, guiding them, loving them, making them laugh, making memories that will sustain them even if the worst happens.
And if it takes a freaking MRI to keep me here, then damn it, my stupid insurance company needs to get with the program.
End rant.
Update: The MRI was approved. I know! I was shocked too. And impressed with my doctor's persuasive abilities. I pray that if the MRI finds anything, it's early, like last time...
Thursday, October 25, 2018
Widow Fantasies
Alyssa and I are watching the Netflix series, “I’m Sorry.”
Let me state right here that this show is so completely inappropriate for my teenage daughter to be watching but she insists that she hears worse language in the first ten minutes at school each day and I figure, what the hell? Right?
Sure, whatever justification gets me to get on with this story, right?
Okay then. Now that it’s been established that I’m a horrible mother, let’s move on to the fact that I’m also a terrible wife.
Yes. There it is
Back to “I’m sorry”. One of the episodes is titled “Divorce Fantasies”. The main character, Andrea, is a happily married woman with a friend who has just gotten divorced. Andrea tells her friend that she (Andrea) sometimes fantasizes about being divorced and how great it would be to get to date in this new and amazing online world.
I told Lyss that I have no fantasies about being divorced. Divorce seems like a lot of work and I’m not really interested in finding out what it’s like to date.
But I do think about being widowed.
Let me remind you that Tom doesn’t leave our house to go to work. So each time he DOES leave for any reason whatsoever, I worry that he won’t be back. I think, “Okay, this is the day he’ll be in an accident that kills him instantly.”
Then I think about how lucky we are that I am the one who covers the insurance for our family. Also about how I’d use the life insurance we have on him to pay off the house, so the girls and I wouldn’t have to move in with my mom and step-dad right away.
I can’t imagine dating, even if I were widowed. I think I’m past that point in my life.
But who knows what might happen once…Ha! I almost wrote ‘once the girls are out of the house.” Hahahahaha.
I will never be lonely because I will probably have my sweet Liv with me. There’s a comfort to that thought even if it is wrapped in sadness for her. I want more for her than to live with her mom (and probably her dad, I’m not actually wishing him dead for Pete Sakes!) (Note to any new readers, I KNOW the saying is Pete’s sake. It’s an old joke to say Pete Sakes. Just go with it. Though honestly, if I were going with the tone set by the above mentioned television show, I’d have said for fuck’s sake. So, hey, I’m being pretty PG here.)
I do wonder, though, how much to shit my house would go if Tom were to die. I mean, I can vacuum and keep things fairly clean but he’s the one who insists on no eating outside the kitchen/dining area. Left up to me, the cat would probably move in, the girls would eat in the living room (I would to, duh!) and, well, we’d probably live in filth.
And the outside? Forget it. I would have to hire someone to mow because that seems like a lot of work.
Okay, the fantasy has officially become a nightmare. I don’t want him to die. Not that I ever did, but now that I’ve really thought about it…I really, REALLY don’t want to find out what it’s like to be a widow.
Let me state right here that this show is so completely inappropriate for my teenage daughter to be watching but she insists that she hears worse language in the first ten minutes at school each day and I figure, what the hell? Right?
Sure, whatever justification gets me to get on with this story, right?
Okay then. Now that it’s been established that I’m a horrible mother, let’s move on to the fact that I’m also a terrible wife.
Yes. There it is
Back to “I’m sorry”. One of the episodes is titled “Divorce Fantasies”. The main character, Andrea, is a happily married woman with a friend who has just gotten divorced. Andrea tells her friend that she (Andrea) sometimes fantasizes about being divorced and how great it would be to get to date in this new and amazing online world.
I told Lyss that I have no fantasies about being divorced. Divorce seems like a lot of work and I’m not really interested in finding out what it’s like to date.
But I do think about being widowed.
Let me remind you that Tom doesn’t leave our house to go to work. So each time he DOES leave for any reason whatsoever, I worry that he won’t be back. I think, “Okay, this is the day he’ll be in an accident that kills him instantly.”
Then I think about how lucky we are that I am the one who covers the insurance for our family. Also about how I’d use the life insurance we have on him to pay off the house, so the girls and I wouldn’t have to move in with my mom and step-dad right away.
I can’t imagine dating, even if I were widowed. I think I’m past that point in my life.
But who knows what might happen once…Ha! I almost wrote ‘once the girls are out of the house.” Hahahahaha.
I will never be lonely because I will probably have my sweet Liv with me. There’s a comfort to that thought even if it is wrapped in sadness for her. I want more for her than to live with her mom (and probably her dad, I’m not actually wishing him dead for Pete Sakes!) (Note to any new readers, I KNOW the saying is Pete’s sake. It’s an old joke to say Pete Sakes. Just go with it. Though honestly, if I were going with the tone set by the above mentioned television show, I’d have said for fuck’s sake. So, hey, I’m being pretty PG here.)
I do wonder, though, how much to shit my house would go if Tom were to die. I mean, I can vacuum and keep things fairly clean but he’s the one who insists on no eating outside the kitchen/dining area. Left up to me, the cat would probably move in, the girls would eat in the living room (I would to, duh!) and, well, we’d probably live in filth.
And the outside? Forget it. I would have to hire someone to mow because that seems like a lot of work.
Okay, the fantasy has officially become a nightmare. I don’t want him to die. Not that I ever did, but now that I’ve really thought about it…I really, REALLY don’t want to find out what it’s like to be a widow.
Wednesday, October 24, 2018
A Normal Kid
As I tucked Olivia into bed the other night, I watched her as she arranged her menagerie of comfort items and I wondered aloud, “Why can’t you be a normal kid and sleep with stuffed animals?”
She laughed (thank goodness) and looked down at her grouping.
Let me help you out here. Among the things she sleeps with each night were: a book light, sometimes illuminated, sometimes not, a turtle nightlight, a pen shaped like a mermaid tail, the cap to a shampoo bottle, and a ball with a mermaid floating around in some sort of liquid inside it.
Yeah. Those are the things she takes to bed with her each night. She sometimes even wakes up in the middle of the night, calling out to me that she can’t find one of those things. I usually tell her we’ll find it in the morning (it’s almost always between the wall and the mattress or on the floor having fallen between the wall and the mattress.) I also tell her to go back to sleep.
All of the things she takes to bed for comfort are basically a kidney puncture waiting to happen. I don’t know how she can sleep with those things strewn about her bed, rolling onto them in her sleep, having them leave weird indentations on her skin by morning.
But honestly, I felt bad for the ‘normal kid’ comment. I mean, I’m sure lots of ‘normies’ sleep with weird things. And I know a lot of kids with her syndrome love stuffed animals.
My kid, however, thinks stuffed animals are creepy and would rather sleep with a backscratcher that’s shaped like a rake (you can get one of your very own at Rural King, they come in lots of different colors!) For the record, this post is NOT sponsored by Rural King. I’m pretty sure Rural King does not sponsor blogs. And let’s be clear here, this blog isn’t sponsored by anything but my own desire to overshare.
Anyway, all that to say that for the next several days, Olivia would suddenly chuckle and mutter, “A normal kid.”
I’m glad she finds the idea of ‘normal’ to be amusing. I’m glad she realized I wasn’t actually calling her abnormal.
We’re a family of weirdos, we all embrace our weirdness and we celebrate our differences. Alyssa has approximately three thousand seven hundred fourteen stuffed animals. I think she’s cornered the market on that part of ‘normal’ for this family.
I just wish Liv would pick things to sleep with that aren’t an actual danger to her health, you know, like the cup she once snuggled with when she was about three. That wouldn’t be nearly as bad as the rake or the mermaid pen.
Alas, she’s very much her own person and she’s decided those things bring her comfort in the dark of night.
Who am I to cause her stress by taking away her comfort items? Okay, I know I’m her mom and I should keep her safe so yeah, the rake backscratcher has to go, but the mermaid ball? I think that one’s unlikely to hurt her. And if these things help her sleep through the night? Everyone knows I’m all for that.
She laughed (thank goodness) and looked down at her grouping.
Let me help you out here. Among the things she sleeps with each night were: a book light, sometimes illuminated, sometimes not, a turtle nightlight, a pen shaped like a mermaid tail, the cap to a shampoo bottle, and a ball with a mermaid floating around in some sort of liquid inside it.
Yeah. Those are the things she takes to bed with her each night. She sometimes even wakes up in the middle of the night, calling out to me that she can’t find one of those things. I usually tell her we’ll find it in the morning (it’s almost always between the wall and the mattress or on the floor having fallen between the wall and the mattress.) I also tell her to go back to sleep.
All of the things she takes to bed for comfort are basically a kidney puncture waiting to happen. I don’t know how she can sleep with those things strewn about her bed, rolling onto them in her sleep, having them leave weird indentations on her skin by morning.
But honestly, I felt bad for the ‘normal kid’ comment. I mean, I’m sure lots of ‘normies’ sleep with weird things. And I know a lot of kids with her syndrome love stuffed animals.
My kid, however, thinks stuffed animals are creepy and would rather sleep with a backscratcher that’s shaped like a rake (you can get one of your very own at Rural King, they come in lots of different colors!) For the record, this post is NOT sponsored by Rural King. I’m pretty sure Rural King does not sponsor blogs. And let’s be clear here, this blog isn’t sponsored by anything but my own desire to overshare.
Anyway, all that to say that for the next several days, Olivia would suddenly chuckle and mutter, “A normal kid.”
I’m glad she finds the idea of ‘normal’ to be amusing. I’m glad she realized I wasn’t actually calling her abnormal.
We’re a family of weirdos, we all embrace our weirdness and we celebrate our differences. Alyssa has approximately three thousand seven hundred fourteen stuffed animals. I think she’s cornered the market on that part of ‘normal’ for this family.
I just wish Liv would pick things to sleep with that aren’t an actual danger to her health, you know, like the cup she once snuggled with when she was about three. That wouldn’t be nearly as bad as the rake or the mermaid pen.
Alas, she’s very much her own person and she’s decided those things bring her comfort in the dark of night.
Who am I to cause her stress by taking away her comfort items? Okay, I know I’m her mom and I should keep her safe so yeah, the rake backscratcher has to go, but the mermaid ball? I think that one’s unlikely to hurt her. And if these things help her sleep through the night? Everyone knows I’m all for that.
Tuesday, October 23, 2018
Telling Stories
Olivia’s current favorite thing is to write ‘fan fic’. She likes to come up with stories, mostly about a party at our house where all her imaginary friends as well as characters from all her favorite movies come over and hang out.
In her stories, she talks to everyone, she’s the life of the party. Often, she’ll write in classmates and they’re always so happy to have her talk to them. It’s super cute and it breaks my heart all at the same time.
I love that she has such an active imagination. I love that she puts the words down on the screen. She uses both her tablet and the computer to write these stories.
She gets so many ideas for her stories from the movies she watches and the books she reads. She wants so badly to be the star and I want that for her. I want her to be the star of her own life, to break that shell that keeps her from shining wherever she is. She shines so bright at home, singing and dancing and laughing and talking.
I wish so badly she could do that at school. I want everyone who knows her to truly know her, to see the beautiful soul that is trapped in her brain, in her body. She’s so smart and sweet and funny. But no one but those closest to her can see that because she can’t let anyone else in.
And I don’t know how to help her.
It’s been suggested by the school that she see a therapist. Sure, okay. Fine. We’ll do that. Except, how will that help if she won’t/can’t talk to anyone but me and Tom and Alyssa and my mom?
I don’t know.
What I do know is that she writes these stories, getting the words out of her own head and that’s awesome. It’s a window into her brain, her thought process. It gives us a moment of insight into how and what she’s feeling. If I can’t have her open all the time, I’ll take these little moments, these bright spots where she shares herself with the world.
In her stories, she talks to everyone, she’s the life of the party. Often, she’ll write in classmates and they’re always so happy to have her talk to them. It’s super cute and it breaks my heart all at the same time.
I love that she has such an active imagination. I love that she puts the words down on the screen. She uses both her tablet and the computer to write these stories.
She gets so many ideas for her stories from the movies she watches and the books she reads. She wants so badly to be the star and I want that for her. I want her to be the star of her own life, to break that shell that keeps her from shining wherever she is. She shines so bright at home, singing and dancing and laughing and talking.
I wish so badly she could do that at school. I want everyone who knows her to truly know her, to see the beautiful soul that is trapped in her brain, in her body. She’s so smart and sweet and funny. But no one but those closest to her can see that because she can’t let anyone else in.
And I don’t know how to help her.
It’s been suggested by the school that she see a therapist. Sure, okay. Fine. We’ll do that. Except, how will that help if she won’t/can’t talk to anyone but me and Tom and Alyssa and my mom?
I don’t know.
What I do know is that she writes these stories, getting the words out of her own head and that’s awesome. It’s a window into her brain, her thought process. It gives us a moment of insight into how and what she’s feeling. If I can’t have her open all the time, I’ll take these little moments, these bright spots where she shares herself with the world.
Monday, October 22, 2018
Bless Her Heart
You know what’s funny. I get more parenting advice from people who have never raised children than anyone else in the world.
At my old job there were two women who never had children, never lived full time with children, never got up several times a night for YEARS with a child and these two women gave me more advice than all the people we worked with who were actual parents put together.
Last week, Tom got some advice about parenting Alyssa from someone who has never raised a child. Okay, let’s not be vague, it was Tom’s oldest daughter. She did give birth to a child and I do consider her his mother but she isn’t raising him. So…yeah.
Apparently, J follows Alyssa on several social media sites and is worried about the intensity of A’s relationship with N.
Tom was the one who talked to J. He reminded her that Lyss is almost sixteen, which means she feels things intensely. She’s fine. She and N are fine. We’re all fine.
And please, let’s remember that J might not be the most reliable person to be giving relationship advise.
My eyes have rolled right out of my head and are halfway to Indianapolis. Julie, please catch them and return them to me when we see you in Bloomington in a few weeks.
That’s how I feel about J’s parenting advice.
See, let’s remember that I also followed A on social media. I happen to live with her too. I see her and N together. I know they’d like to spend every waking hour together if it were possible/allowed. However, I also know that Alyssa has a very busy life, as does N. They make time for each other because they want to but other parts of their lives are not suffering because of their relationship. They maintain other friendships, they do their homework. N works. They’re both in the upcoming musical. They do a boatload of band things, both together and separately.
They’re fine.
They’re young and in love and that’s fine.
After he’d hung up with J Tom relayed her suggestion to me that perhaps Lyss should go spend a few weeks with her (J) to get her ‘out of N’s sphere’ for a while. OMG. Please. As freaking if.
I told Tom that J was the last person we’d want to send Alyssa away to spend time with if we wanted to get her out of Edon. J suggested that perhaps the only reason A and N are together is because there are only eleven other people in our town. Okay. Sure.
J has never raised a child. She was not the most trustworthy teenager. She probably remembers making REALLY BAD decisions as a teenager.
I reminded Tom that hey, at least neither N or A can get the other pregnant. So there’s that.
For the record, Alyssa will not be heading off to New Jersey to spend time with her sister. I feel no need to get her away from N. N is great. A is great. We’re all great, except maybe those people who have never raised kids who insist on giving the rest of us advice. They’re not so great.
At my old job there were two women who never had children, never lived full time with children, never got up several times a night for YEARS with a child and these two women gave me more advice than all the people we worked with who were actual parents put together.
Last week, Tom got some advice about parenting Alyssa from someone who has never raised a child. Okay, let’s not be vague, it was Tom’s oldest daughter. She did give birth to a child and I do consider her his mother but she isn’t raising him. So…yeah.
Apparently, J follows Alyssa on several social media sites and is worried about the intensity of A’s relationship with N.
Tom was the one who talked to J. He reminded her that Lyss is almost sixteen, which means she feels things intensely. She’s fine. She and N are fine. We’re all fine.
And please, let’s remember that J might not be the most reliable person to be giving relationship advise.
My eyes have rolled right out of my head and are halfway to Indianapolis. Julie, please catch them and return them to me when we see you in Bloomington in a few weeks.
That’s how I feel about J’s parenting advice.
See, let’s remember that I also followed A on social media. I happen to live with her too. I see her and N together. I know they’d like to spend every waking hour together if it were possible/allowed. However, I also know that Alyssa has a very busy life, as does N. They make time for each other because they want to but other parts of their lives are not suffering because of their relationship. They maintain other friendships, they do their homework. N works. They’re both in the upcoming musical. They do a boatload of band things, both together and separately.
They’re fine.
They’re young and in love and that’s fine.
After he’d hung up with J Tom relayed her suggestion to me that perhaps Lyss should go spend a few weeks with her (J) to get her ‘out of N’s sphere’ for a while. OMG. Please. As freaking if.
I told Tom that J was the last person we’d want to send Alyssa away to spend time with if we wanted to get her out of Edon. J suggested that perhaps the only reason A and N are together is because there are only eleven other people in our town. Okay. Sure.
J has never raised a child. She was not the most trustworthy teenager. She probably remembers making REALLY BAD decisions as a teenager.
I reminded Tom that hey, at least neither N or A can get the other pregnant. So there’s that.
For the record, Alyssa will not be heading off to New Jersey to spend time with her sister. I feel no need to get her away from N. N is great. A is great. We’re all great, except maybe those people who have never raised kids who insist on giving the rest of us advice. They’re not so great.
Friday, October 19, 2018
1 in 8
We all know eight women, right? I mean, if you’re a woman and you have any family at all, you know more than eight women.
One in eight women will be diagnosed with breast cancer in her lifetime.
I graduated in a class of 44, pretty much half girls and half boys. That means there were at least twenty girls who became women. Which, statistically speaking, means that at least two of us were bound to end up with breast cancer.
You want to feel young? Get a breast cancer diagnosis in your forties (no, don’t do this, I don’t wish this on anyone, ever.) Every single doctor I saw during my cancer treatments told me that I was ‘so young.’ I skewed the average of the patients receiving chemo each time I went in for a treatment.
Cancer is not an ‘old peoples’ disease. It happens to all ages, all races, both genders. And it sucks.
The aftermath of a cancer diagnosis, even beyond treatment and being ‘healed’ is pretty awful.
Sure, I’m grateful to be here. I’m so very thankful to be alive but I am scarred, both physically and emotionally. I’m a wreck. I am still tired. I’m weak. I worried incessantly.
But I’m here to fight another day.
So get those mammograms, those screenings. Get checked, and then get rechecked. Trust your instincts. If something hurts and you can feel that it’s not a ‘normal’ ache/pain, fight your way through the medical bureaucracy and find someone who will listen to you.
Get any vaccinations available that might prevent cancer.
Both my girls have had the HPV vaccinations. Alyssa got hers before I received my diagnosis and Olivia after but I’d already planned for Liv to receive hers before I was told I had cancer.
If there is anything that might prevent cancer, please, PLEASE do it. It’s such a horrible disease. Of course no illness/disease is fun. I get that but I can only speak for cancer when I say that the treatment is pretty awful too.
Let’s keeping fighting the good fight. Let’s keep working to find cures for all cancers. Babies should not have to endure chemotherapy. Mom’s shouldn’t have to worry about loving their kids enough today because they might not be here tomorrow. Spouses shouldn’t have to bury their love because cancer took them away.
Let’s fight together to save more lives.
One in eight women will be diagnosed with breast cancer in her lifetime.
I graduated in a class of 44, pretty much half girls and half boys. That means there were at least twenty girls who became women. Which, statistically speaking, means that at least two of us were bound to end up with breast cancer.
You want to feel young? Get a breast cancer diagnosis in your forties (no, don’t do this, I don’t wish this on anyone, ever.) Every single doctor I saw during my cancer treatments told me that I was ‘so young.’ I skewed the average of the patients receiving chemo each time I went in for a treatment.
Cancer is not an ‘old peoples’ disease. It happens to all ages, all races, both genders. And it sucks.
The aftermath of a cancer diagnosis, even beyond treatment and being ‘healed’ is pretty awful.
Sure, I’m grateful to be here. I’m so very thankful to be alive but I am scarred, both physically and emotionally. I’m a wreck. I am still tired. I’m weak. I worried incessantly.
But I’m here to fight another day.
So get those mammograms, those screenings. Get checked, and then get rechecked. Trust your instincts. If something hurts and you can feel that it’s not a ‘normal’ ache/pain, fight your way through the medical bureaucracy and find someone who will listen to you.
Get any vaccinations available that might prevent cancer.
Both my girls have had the HPV vaccinations. Alyssa got hers before I received my diagnosis and Olivia after but I’d already planned for Liv to receive hers before I was told I had cancer.
If there is anything that might prevent cancer, please, PLEASE do it. It’s such a horrible disease. Of course no illness/disease is fun. I get that but I can only speak for cancer when I say that the treatment is pretty awful too.
Let’s keeping fighting the good fight. Let’s keep working to find cures for all cancers. Babies should not have to endure chemotherapy. Mom’s shouldn’t have to worry about loving their kids enough today because they might not be here tomorrow. Spouses shouldn’t have to bury their love because cancer took them away.
Let’s fight together to save more lives.
Thursday, October 18, 2018
Day of Rest
Once upon a time, Sundays were designated a day of rest.
The past few Sunday’s by 6pm I am so tired I just want to cry. I even sleep in (like REALLY sleep in) on Sundays and yet by the end of the day, I’m achy and tired.
I do laundry on Sunday, and that means I go up and down the basement stairs all day long. We usually have at least five loads of laundry to do, and that’s if I’m not washing sheets, which I usually am, so let’s make that seven loads.
Not only do I have to go down to the basement to do the laundry, I have to carry all the clean laundry to the second floor, so let’s just add in another fourteen steps I climb to the other fourteen. Up and down, all day long.
Added to all that is the fact that I cook on Sundays for the coming week. Tom really likes to feed leftovers to Liv most of the week so I cook something that will keep for days and days.
Every other weekend, I make a batch of cookies because heaven forbid we not have homemade cookies in our house.
Let me be honest, though. No one actually expects me to bake those cookies. I do it because I like to do it. I enjoy doing things that make my family happy. Cookies make them happy.
Clean sheets also make them happy, and I don’t mind doing any of these things.
But they do make me tired.
I’m so out of shape. I hurt a lot these days. If I sit for a few minutes, my joints get stiff and when I get up, I walk like I’m ninety years old.
I know I need to move more, that climbing twenty-eight stairs multiple times once a week isn’t cutting it. I need to exercise with intention. But it always feels like so much work and there are always other things that need to be done. So…one of these days.
One of these days I’ll figure out how to get more laundry done throughout the week so I don’t have quite as much on Sunday.
One of these days I’ll find a meal that my entire family likes/wants to eat and I won’t have to make several each Sunday to feed them all for the rest of the week.
One of these days I’ll go on a diet and lose these extra pounds that are taking a toll on my joints and making me ache all night long.
One of these days, I’ll feel healthy enough to actually take care of myself and get even healthier.
One of these days we’ll have an actual day of rest.
One of these days…
The past few Sunday’s by 6pm I am so tired I just want to cry. I even sleep in (like REALLY sleep in) on Sundays and yet by the end of the day, I’m achy and tired.
I do laundry on Sunday, and that means I go up and down the basement stairs all day long. We usually have at least five loads of laundry to do, and that’s if I’m not washing sheets, which I usually am, so let’s make that seven loads.
Not only do I have to go down to the basement to do the laundry, I have to carry all the clean laundry to the second floor, so let’s just add in another fourteen steps I climb to the other fourteen. Up and down, all day long.
Added to all that is the fact that I cook on Sundays for the coming week. Tom really likes to feed leftovers to Liv most of the week so I cook something that will keep for days and days.
Every other weekend, I make a batch of cookies because heaven forbid we not have homemade cookies in our house.
Let me be honest, though. No one actually expects me to bake those cookies. I do it because I like to do it. I enjoy doing things that make my family happy. Cookies make them happy.
Clean sheets also make them happy, and I don’t mind doing any of these things.
But they do make me tired.
I’m so out of shape. I hurt a lot these days. If I sit for a few minutes, my joints get stiff and when I get up, I walk like I’m ninety years old.
I know I need to move more, that climbing twenty-eight stairs multiple times once a week isn’t cutting it. I need to exercise with intention. But it always feels like so much work and there are always other things that need to be done. So…one of these days.
One of these days I’ll figure out how to get more laundry done throughout the week so I don’t have quite as much on Sunday.
One of these days I’ll find a meal that my entire family likes/wants to eat and I won’t have to make several each Sunday to feed them all for the rest of the week.
One of these days I’ll go on a diet and lose these extra pounds that are taking a toll on my joints and making me ache all night long.
One of these days, I’ll feel healthy enough to actually take care of myself and get even healthier.
One of these days we’ll have an actual day of rest.
One of these days…
Wednesday, October 17, 2018
First Chemo Anniversary
A year ago today, I received my first chemotherapy treatment. I’d had my port for probably three or so weeks. I was nervous. I worried about how sick it was going to make me. I knew my hair was going to fall out and I wondered how long it would take from the first chemo for the first strand to fall out (16 days for anyone wondering.)
In the end, it wasn’t all that bad. Sure, it sucked and I felt awful at times (Thanksgiving dinner was fun last year, as I lay on my mom’s bedroom floor, dozing my way through day three post chemo.) but I obviously came through the other side and here we are, watching the anniversaries come and go.
There will be a lot of “One year ago today” moments in the coming months. I know this is probably boring and I’m sorry but I feel like I need to commemorate these moments, these days, as they come along.
I actually kind of dreaded the end of chemo. Those last twelve weeks aren’t so bad and as long as I was receiving the drugs, I knew no new cancer was growing. The chemo was keeping it at bay. I was told after surgery that I was cancer-free, that chemo and radiation was preventative. But I can’t help but worry that without those treatments, any new cancer might be developing, growing, spreading, killing me slowly until, well, it’s not slow anymore.
I am sure all cancer patients/survivors feel this way. I should probably find some to talk to rather than ramble here.
Every ache, every feeling of fatigue, every ping makes me think it’s back, it’s growing, and I’m dying.
I don’t like feeling like this. I don’t like wondering what the next doctor’s appointment is going to bring. I try to just keep living, keep loving, keep parenting my girls and being a wife to Tom. I try to take it day by day because, well, what else can I do? Even if it is back, well, I guess we’d start a new treatment and keep going.
I have a breast MRI this coming Friday. I worry because, well, as I’ve said before, once you’ve heard the worse news, you kind of expect it again. I am praying for the best and preparing myself for the worst.
I got through chemo once, I would get through it again if I had to.
In the end, it wasn’t all that bad. Sure, it sucked and I felt awful at times (Thanksgiving dinner was fun last year, as I lay on my mom’s bedroom floor, dozing my way through day three post chemo.) but I obviously came through the other side and here we are, watching the anniversaries come and go.
There will be a lot of “One year ago today” moments in the coming months. I know this is probably boring and I’m sorry but I feel like I need to commemorate these moments, these days, as they come along.
I actually kind of dreaded the end of chemo. Those last twelve weeks aren’t so bad and as long as I was receiving the drugs, I knew no new cancer was growing. The chemo was keeping it at bay. I was told after surgery that I was cancer-free, that chemo and radiation was preventative. But I can’t help but worry that without those treatments, any new cancer might be developing, growing, spreading, killing me slowly until, well, it’s not slow anymore.
I am sure all cancer patients/survivors feel this way. I should probably find some to talk to rather than ramble here.
Every ache, every feeling of fatigue, every ping makes me think it’s back, it’s growing, and I’m dying.
I don’t like feeling like this. I don’t like wondering what the next doctor’s appointment is going to bring. I try to just keep living, keep loving, keep parenting my girls and being a wife to Tom. I try to take it day by day because, well, what else can I do? Even if it is back, well, I guess we’d start a new treatment and keep going.
I have a breast MRI this coming Friday. I worry because, well, as I’ve said before, once you’ve heard the worse news, you kind of expect it again. I am praying for the best and preparing myself for the worst.
I got through chemo once, I would get through it again if I had to.
Tuesday, October 16, 2018
Happy Birthday
Today is Amy’s birthday. The first one since she died in February. I can only imagine how hard this day must be for her mom, for her kids, for the love she left behind.
Amy’s daughter is pregnant with Amy’s first grandchild. I think she’s due next month. It’s a girl.
Amy would have been so thrilled. I believe she is thrilled, watching from heaven.
I also believe she’s still loving all of us, watching out for us, keeping us safe and reminding us each day that we’re loved.
When we were growing up, Amy was my favorite cousin. She was only thirteen months older than I am but she always seemed so much more mature. She was very protective even when we were little kids.
She had a tough time of it as a teenager and a young adult but she figured it out and left her kids with a legacy of love. They knew they were deeply, thoroughly loved.
She loved a lot in her 48 years. She left a legacy of love and devotion.
Who would ever think at 24 that they have lived half their life? It seems so unfair. I know she had more she wanted to do but it’s so much better to focus on all that she did do.
She lived. She loved. She raised strong, smart, kind children and that’s important work right there.
I pray that if my time is shorter than I want it to be that I can get as much loving in as Amy did. I hope my kids feel my love even when I’m not here to tell them and show them.
I’ve felt her with me in the months since she died. I’ve felt her comforting presence, letting me know that it’s all going to be okay, no matter how it ends. She’s been here with so many of us, loving us in her new way.
I’m grateful that I knew her. I’m grateful that I got to watch her mother her kids and feel the love she had for so many.
Happy Heavenly Birthday, Amy. You are remembered. You are missed. You are loved.
Amy’s daughter is pregnant with Amy’s first grandchild. I think she’s due next month. It’s a girl.
Amy would have been so thrilled. I believe she is thrilled, watching from heaven.
I also believe she’s still loving all of us, watching out for us, keeping us safe and reminding us each day that we’re loved.
When we were growing up, Amy was my favorite cousin. She was only thirteen months older than I am but she always seemed so much more mature. She was very protective even when we were little kids.
She had a tough time of it as a teenager and a young adult but she figured it out and left her kids with a legacy of love. They knew they were deeply, thoroughly loved.
She loved a lot in her 48 years. She left a legacy of love and devotion.
Who would ever think at 24 that they have lived half their life? It seems so unfair. I know she had more she wanted to do but it’s so much better to focus on all that she did do.
She lived. She loved. She raised strong, smart, kind children and that’s important work right there.
I pray that if my time is shorter than I want it to be that I can get as much loving in as Amy did. I hope my kids feel my love even when I’m not here to tell them and show them.
I’ve felt her with me in the months since she died. I’ve felt her comforting presence, letting me know that it’s all going to be okay, no matter how it ends. She’s been here with so many of us, loving us in her new way.
I’m grateful that I knew her. I’m grateful that I got to watch her mother her kids and feel the love she had for so many.
Happy Heavenly Birthday, Amy. You are remembered. You are missed. You are loved.
Monday, October 15, 2018
Anxious
Our school teaches the whole Cusp of Puberty thing to fifth graders. I think perhaps they should start a little younger but I’m not in charge so, whatever.
Olivia’s class was presented with this just last week.
Let me remind all four of you (ha! I amuse myself in thinking that four whole people read here anymore. But thank you, Julie for being so faithful. J ) that Olivia has been living the life of Puberty for over a year.
So this shouldn’t have been a big deal for her.
Yeah, you know what’s coming.
It turned out to be a big deal.
The night after the class, she was having trouble sleeping. I could tell because she rambled on and on for about a half hour after I tucked her in. I finally asked, “Livie, is anything bothering you?”
She sighed and said, “Well, you know how the girls went with the nurse to a classroom and the boys went with the gym teacher?”
“Yeah?”
“The nurse showed us a video about how our bodies are changing and it was weird. And then she said that our voices might change and crack.”
“Oh,” I replied. “Well, I think that mostly only boys have to worry about their voices changing and cracking.”
“Yeah, but if my voice is going to change and crack, what day will that happen?”
Aww, my little sweetheart. I get it. She just wants to be able to prepare for yet another change. I much prefer to know what’s coming too.
I reminded her that when she started her period, we didn’t know exactly day that would happen but that it was no big deal, we handled it together and it was fine. Though she acknowledged that I was right about it not being a big deal, she still asked a couple more times what day her voice would change.
I considered telling her that it would change next Tuesday, just so we could both go to sleep but decided that would be mean.
We continued to talk. I let her get it all out and when we finally fell asleep, I felt like I’d had a Good Mom moment.
My girls both like to talk at night, when it’s dark, when they don’t have to look at me and can just let it all out. I’m so glad we have these moments, this time to connect. I hope I’m laying foundations for them, building their confidence, giving them strength and confidence to face whatever life throws at them. They deserve that and if I don’t have decades like I want to think I do, I need to continue to make the most of these days that we do have together, these quiet nights where we connect and my love for them goes deep inside them where it will continue to give them strength even if I’m not here to continue to feed into it on a daily basis.
Huh…it seems that Olivia is not the only one who is anxious about a few things these days.
Olivia’s class was presented with this just last week.
Let me remind all four of you (ha! I amuse myself in thinking that four whole people read here anymore. But thank you, Julie for being so faithful. J ) that Olivia has been living the life of Puberty for over a year.
So this shouldn’t have been a big deal for her.
Yeah, you know what’s coming.
It turned out to be a big deal.
The night after the class, she was having trouble sleeping. I could tell because she rambled on and on for about a half hour after I tucked her in. I finally asked, “Livie, is anything bothering you?”
She sighed and said, “Well, you know how the girls went with the nurse to a classroom and the boys went with the gym teacher?”
“Yeah?”
“The nurse showed us a video about how our bodies are changing and it was weird. And then she said that our voices might change and crack.”
“Oh,” I replied. “Well, I think that mostly only boys have to worry about their voices changing and cracking.”
“Yeah, but if my voice is going to change and crack, what day will that happen?”
Aww, my little sweetheart. I get it. She just wants to be able to prepare for yet another change. I much prefer to know what’s coming too.
I reminded her that when she started her period, we didn’t know exactly day that would happen but that it was no big deal, we handled it together and it was fine. Though she acknowledged that I was right about it not being a big deal, she still asked a couple more times what day her voice would change.
I considered telling her that it would change next Tuesday, just so we could both go to sleep but decided that would be mean.
We continued to talk. I let her get it all out and when we finally fell asleep, I felt like I’d had a Good Mom moment.
My girls both like to talk at night, when it’s dark, when they don’t have to look at me and can just let it all out. I’m so glad we have these moments, this time to connect. I hope I’m laying foundations for them, building their confidence, giving them strength and confidence to face whatever life throws at them. They deserve that and if I don’t have decades like I want to think I do, I need to continue to make the most of these days that we do have together, these quiet nights where we connect and my love for them goes deep inside them where it will continue to give them strength even if I’m not here to continue to feed into it on a daily basis.
Huh…it seems that Olivia is not the only one who is anxious about a few things these days.
Tuesday, October 9, 2018
Dream
Okay, then. It took me over a year (one year, one month, two weeks and 4 days, to be exact) after being diagnosed with cancer to have a dream about dying.
In my dream I found another weird lump. This wasn’t in my breast, it was on my stomach, weirdly. But it was there and I went to the doctor, who told me I needed to prepare my girls to live without me.
I woke up at that point, all frazzled and scared and it was creepy.
I do not currently have any lumps on my stomach or anywhere else that I’m aware of. I do searches quite often because, duh.
I go through surgeries, chemotherapy, radiation, hair loss and regrowth without this kind of dream.
Does this mean that I might be on the cusp of accepting that I’m going to be okay?
I’m so afraid to even think that, let alone type it, because it feels like I’m daring whatever powers that be to prove me wrong.
I want so badly to be okay.
I want to be here with my girls as they continue to grow. I want to be here with Tom as we continue to grow. I want to take care of my family and friends and live and love.
I pray about this every single night.
I am no more special than any other woman who has a family, children, friends, a life. Why should I get to keep living and taking care of everyone I love when others haven’t had that luxury? Amy is not here to see the birth of her first grandchild, Baby A, this month or next. Other moms out there have lost their battle with cancer, leaving younger children than mine. Other mothers of special needs children have died, leaving their sweet babies confused and without the person who was their whole world, just the way my death would leave Olivia.
Why am I special enough to be allowed to beat cancer?
I’m not, but I want to anyway. And on the flip side, every day people beat cancer, they keep fighting, they keep living. Why can’t I be one of those people? I feel good these days, I feel lucky/blessed, whatever you want to call it. I am living and loving and fighting and even when the bad dreams come, I am grateful for every single day that I wake up.
In my dream I found another weird lump. This wasn’t in my breast, it was on my stomach, weirdly. But it was there and I went to the doctor, who told me I needed to prepare my girls to live without me.
I woke up at that point, all frazzled and scared and it was creepy.
I do not currently have any lumps on my stomach or anywhere else that I’m aware of. I do searches quite often because, duh.
I go through surgeries, chemotherapy, radiation, hair loss and regrowth without this kind of dream.
Does this mean that I might be on the cusp of accepting that I’m going to be okay?
I’m so afraid to even think that, let alone type it, because it feels like I’m daring whatever powers that be to prove me wrong.
I want so badly to be okay.
I want to be here with my girls as they continue to grow. I want to be here with Tom as we continue to grow. I want to take care of my family and friends and live and love.
I pray about this every single night.
I am no more special than any other woman who has a family, children, friends, a life. Why should I get to keep living and taking care of everyone I love when others haven’t had that luxury? Amy is not here to see the birth of her first grandchild, Baby A, this month or next. Other moms out there have lost their battle with cancer, leaving younger children than mine. Other mothers of special needs children have died, leaving their sweet babies confused and without the person who was their whole world, just the way my death would leave Olivia.
Why am I special enough to be allowed to beat cancer?
I’m not, but I want to anyway. And on the flip side, every day people beat cancer, they keep fighting, they keep living. Why can’t I be one of those people? I feel good these days, I feel lucky/blessed, whatever you want to call it. I am living and loving and fighting and even when the bad dreams come, I am grateful for every single day that I wake up.
Saturday, October 6, 2018
Pain
Yesterday at work, I was in pain, not horrible pain, definitely endurable but pain nonetheless. I thought to myself, "I wish someone could look at me and see my pain."
You know, like a superpower (that poor person) where someone could see heat spots on people, where they were hurting.
But then it hit me.
God sees our pain.
Not to get all theological and all but I believe. I pray every single day and I believe there is a greater being looking out for all of us and that there is something beyond this physical world.
So this belief helped me yesterday as endured my pain.
I realized in that moment that God sees everyone's pain and He probably FEELS our pain right along with us. We are never alone in our pain. How greatly He must hurt. The pain He must endure as our worlds burns, as it floods, as people hurt each other and kill each other and hate each other. I can't even imagine.
My pain, whether it is physical or emotional, is endurable because I have God on my side. He is probably carrying most of my pain at all times.
I am so grateful for that moment of clarity during a long work day.
I have to believe there is more good in this world than bad. I have to believe there is more love than pain. I have to believe that more people want to do go than those who want to do bad. I have to believe there are more good men than bad and more good women than bad. I have to believe that we ALL want to be better parents, better spouses, better friend. I have to believe that because I believe in a benevolent God who put us here to love and live and laugh and do to all those things even in the face of the bad that comes our way.
He sees our pain and He feels it right along with us. He loves us and wants better for us. I have to believe that.
You know, like a superpower (that poor person) where someone could see heat spots on people, where they were hurting.
But then it hit me.
God sees our pain.
Not to get all theological and all but I believe. I pray every single day and I believe there is a greater being looking out for all of us and that there is something beyond this physical world.
So this belief helped me yesterday as endured my pain.
I realized in that moment that God sees everyone's pain and He probably FEELS our pain right along with us. We are never alone in our pain. How greatly He must hurt. The pain He must endure as our worlds burns, as it floods, as people hurt each other and kill each other and hate each other. I can't even imagine.
My pain, whether it is physical or emotional, is endurable because I have God on my side. He is probably carrying most of my pain at all times.
I am so grateful for that moment of clarity during a long work day.
I have to believe there is more good in this world than bad. I have to believe there is more love than pain. I have to believe that more people want to do go than those who want to do bad. I have to believe there are more good men than bad and more good women than bad. I have to believe that we ALL want to be better parents, better spouses, better friend. I have to believe that because I believe in a benevolent God who put us here to love and live and laugh and do to all those things even in the face of the bad that comes our way.
He sees our pain and He feels it right along with us. He loves us and wants better for us. I have to believe that.
Thursday, October 4, 2018
15
Today Tom and I have been married for fifteen years. Go us!
This past year feels like it should count for about five years compared to the previous fourteen. But hey, we weather a health crisis and a job loss and we kept our sense of humor and I'm pretty sure we still like each other. I consider myself very lucky to be able to say that.
Our girls are happy (especially when we let them have their way) and we are a good team.
Of course, it helps that we have a living room and a family room and both rooms have televisions. I can watch all the Great British Baking I want and he can watch all the mystery/cop/murder shows he wants. Win/win and no one is asking for a divorce.
Though to be completely candid, just today over dinner I did ask him if he wanted a divorce, but that's only because he was trying to talk like 45 (I won't say his name) and it was making me crazy. I mean, give me a break here, I cover my ears whenever that pompous ass is on the television. I can't stand the sound of his voice or the sight of his gross face and orange hair. To have my very own husband, a man who claims to love me, sit across from me saying that hideous creature's words, it was too much to bear.
Thankfully, he (Tom, not 45) declared that he does not want a divorce and, best news yet, he stopped saying those words in that voice. Everybody wins.
This past year feels like it should count for about five years compared to the previous fourteen. But hey, we weather a health crisis and a job loss and we kept our sense of humor and I'm pretty sure we still like each other. I consider myself very lucky to be able to say that.
Our girls are happy (especially when we let them have their way) and we are a good team.
Of course, it helps that we have a living room and a family room and both rooms have televisions. I can watch all the Great British Baking I want and he can watch all the mystery/cop/murder shows he wants. Win/win and no one is asking for a divorce.
Though to be completely candid, just today over dinner I did ask him if he wanted a divorce, but that's only because he was trying to talk like 45 (I won't say his name) and it was making me crazy. I mean, give me a break here, I cover my ears whenever that pompous ass is on the television. I can't stand the sound of his voice or the sight of his gross face and orange hair. To have my very own husband, a man who claims to love me, sit across from me saying that hideous creature's words, it was too much to bear.
Thankfully, he (Tom, not 45) declared that he does not want a divorce and, best news yet, he stopped saying those words in that voice. Everybody wins.
Wednesday, October 3, 2018
Not Much At All
I went on a rant about my parents yesterday and it got lost somewhere in the depths of cyber space.
Honestly, it’s probably for the best. I was cranky (when am I not, right?) and more than a little bitchy so, yes, someone/thing was saving me from myself.
I need to get a grip.
Let’s play a game. It’s October, Breast Cancer Awareness month. Let’s see if I can find positives about having had breast cancer.
Wheee!!
Well, let’s see. I think my marriage is actually stronger now that we’ve been through a major health crisis. Tom was pretty awesome during surgery, treatment and even this past summer when I wasn’t working. He is a rock. I’m lucky to have him and I’m trying hard to remind myself that he’s lucky to have me too. I am pretty sure he thinks so and that’s something.
And hey, tomorrow’s our anniversary, so there’s that. Sixteen years of marriage, almost eighteen years together. We’re among the lucky.
I wish I could say I take better care of myself. I’m trying to get into that mindset. I’ve resolved just today to try and eat less salt (that means cutting out the pickles and that makes me sad because I freaking love pickles.) I’m not quite there for cutting back on sugar (see above and anniversary, I’ve got to get a cake for that.) but I may be on the verge.
I still hate my body but maybe not quite as vehemently as I once did, so that’s something.
I wish I could say that having had cancer has given me some sort of zen and greater appreciation of life but yeah, no. I’m still cranky. I still get road rage walking behind slow people in the grocery store. I am grateful each morning when I wake up and get to spend another day with my family. I know that life is fragile, but that might be more because of Amy, my cousin, than because of my own fight. It’s all blurred together. I was diagnosed, started treatment, Amy got sick, was in an out of the hospital from November until February and then she just…died. She never got a definitive diagnosis. We believe it was some sort of lung cancer.
Yes, and I was still going through treatment. It was tough time for my extended family.
I do believe in the power of prayer. During my treatment, I was probably on every prayer list within a thirty mile radius of my work and house. And I felt the strength of those prayers. I feel like God always hears the prayers, even if He doesn’t give us the answers we hope for. Even if my prognosis had been worse than it was, I would like to believe that those prayers would have still given me comfort and strength.
I have an enormous appreciation for health insurance. Can you even imagine what we’d be facing if I’d gone into treatment without insurance? Wow. The mind reels at the possibility.
I trust my instincts that much more these days. Remember back in the days before Olivia’s diagnosis? I found her syndrome when she was NINE MONTHS OLD. I brought it to her doctor’s attention. I was told she was too pretty to have 5p- syndrome. I mean…
I held that syndrome close to my heart in the ensuing year and a half, knowing we would circle back to it. And we did. And her doctor (the on at Riley, not the one who said she was too pretty.) tested her because she was a smart, caring doctor and here we are.
I trusted my instincts enough to decide not to ‘wait and see’ as my first doctor wanted me to after talking about the pain in my breast. And here we are again. Trust those little voices that tell you something is wrong.
Don’t trust those voices that tell you that you are the Lloyd of your marriage (inside joke, except it’s not funny.)
I want to be stronger, smarter and better than I was before breast cancer and treatment. But really, I’m just me, with a slightly smaller left breast and some physical and emotional/mental scars to show for all that my family and I went through.
Happy October. Go buy a pumpkin. Get a mammogram. Hang a witch from your tree. Do your self exams. Eat some candy corn.
Honestly, it’s probably for the best. I was cranky (when am I not, right?) and more than a little bitchy so, yes, someone/thing was saving me from myself.
I need to get a grip.
Let’s play a game. It’s October, Breast Cancer Awareness month. Let’s see if I can find positives about having had breast cancer.
Wheee!!
Well, let’s see. I think my marriage is actually stronger now that we’ve been through a major health crisis. Tom was pretty awesome during surgery, treatment and even this past summer when I wasn’t working. He is a rock. I’m lucky to have him and I’m trying hard to remind myself that he’s lucky to have me too. I am pretty sure he thinks so and that’s something.
And hey, tomorrow’s our anniversary, so there’s that. Sixteen years of marriage, almost eighteen years together. We’re among the lucky.
I wish I could say I take better care of myself. I’m trying to get into that mindset. I’ve resolved just today to try and eat less salt (that means cutting out the pickles and that makes me sad because I freaking love pickles.) I’m not quite there for cutting back on sugar (see above and anniversary, I’ve got to get a cake for that.) but I may be on the verge.
I still hate my body but maybe not quite as vehemently as I once did, so that’s something.
I wish I could say that having had cancer has given me some sort of zen and greater appreciation of life but yeah, no. I’m still cranky. I still get road rage walking behind slow people in the grocery store. I am grateful each morning when I wake up and get to spend another day with my family. I know that life is fragile, but that might be more because of Amy, my cousin, than because of my own fight. It’s all blurred together. I was diagnosed, started treatment, Amy got sick, was in an out of the hospital from November until February and then she just…died. She never got a definitive diagnosis. We believe it was some sort of lung cancer.
Yes, and I was still going through treatment. It was tough time for my extended family.
I do believe in the power of prayer. During my treatment, I was probably on every prayer list within a thirty mile radius of my work and house. And I felt the strength of those prayers. I feel like God always hears the prayers, even if He doesn’t give us the answers we hope for. Even if my prognosis had been worse than it was, I would like to believe that those prayers would have still given me comfort and strength.
I have an enormous appreciation for health insurance. Can you even imagine what we’d be facing if I’d gone into treatment without insurance? Wow. The mind reels at the possibility.
I trust my instincts that much more these days. Remember back in the days before Olivia’s diagnosis? I found her syndrome when she was NINE MONTHS OLD. I brought it to her doctor’s attention. I was told she was too pretty to have 5p- syndrome. I mean…
I held that syndrome close to my heart in the ensuing year and a half, knowing we would circle back to it. And we did. And her doctor (the on at Riley, not the one who said she was too pretty.) tested her because she was a smart, caring doctor and here we are.
I trusted my instincts enough to decide not to ‘wait and see’ as my first doctor wanted me to after talking about the pain in my breast. And here we are again. Trust those little voices that tell you something is wrong.
Don’t trust those voices that tell you that you are the Lloyd of your marriage (inside joke, except it’s not funny.)
I want to be stronger, smarter and better than I was before breast cancer and treatment. But really, I’m just me, with a slightly smaller left breast and some physical and emotional/mental scars to show for all that my family and I went through.
Happy October. Go buy a pumpkin. Get a mammogram. Hang a witch from your tree. Do your self exams. Eat some candy corn.
Tuesday, October 2, 2018
October
Oh, hey, did you know that October is Breast Cancer Awareness month?
What does this mean? Hell if I know.
I do know that A’s girlfriend, N, put pink gauges in her ears in honor of Breast Cancer Awareness. Go N!
I’m not sure if I’m supposed to do something or say something or celebrate my life or what.
Maybe we need cake. There’s always a reason to have cake. Just ask my giant butt. My butt freaking loves cake.
I guess I could make a list of all the ways breast cancer has changed my life. I could ruminate over how the last year affected me, both good and bad.
Maybe tomorrow.
What does this mean? Hell if I know.
I do know that A’s girlfriend, N, put pink gauges in her ears in honor of Breast Cancer Awareness. Go N!
I’m not sure if I’m supposed to do something or say something or celebrate my life or what.
Maybe we need cake. There’s always a reason to have cake. Just ask my giant butt. My butt freaking loves cake.
I guess I could make a list of all the ways breast cancer has changed my life. I could ruminate over how the last year affected me, both good and bad.
Maybe tomorrow.
Monday, October 1, 2018
Spirit Week Fall 2018
This week is spirit week for homecoming. The girls are going all out this year. Alyssa went so far as to enlist my mom’s help in making a tutu. Cool, right? I mean, I’m just so glad I didn’t get drafted into helping. Wheee!
Today was ‘Dress as your favorite Candy’ day for Alyssa and hat day for Olivia. They sometimes make different days for the Jr. High/High school versus the elementary school. I don’t know why, they just do.
Olivia was worried about this, though. See, last week, on Friday, they announced over intercom all the spirit days and Liv was fretful this morning that she’d be the only kid in a hat since they (whoever did the announcing) hadn’t said anything about hats.
I assured her that other parents check the school website as much as I do and it would all be fine. She wasn’t so sure and decided she’d pack her headband that held a tiny crown (so cute!) in her backpack and put it on once she was sure other kids were wearing hats. The leggings she was wearing could be said to look like they had gummy jewels on them, so she was set for wearing candy if she needed to be. Not that she’d explain herself to anyone, I mean, let’s not get crazy.
Alyssa wore a red t-shirt on which she’d painted a white S. She also wore a rainbow tutu she borrowed from her sister (no, NOT Jessica, duh) and polished her nails rainbow colors. She was, obviously, a skittle. She was going to suggest people “Taste the rainbow” as often as she could throughout the day.
Tomorrow is dress as a game piece. They’re both going as Scrabble tiles. Alyssa gave $5 to a classmate whose mom was going to make a bunch of t-shirts to spell out something about the sophomore class or you know, something. That woman, whoever she is, is way more ambitious than I could ever hope to be.
I bought a white t-shirt for Olivia, dyed it tan, and drew a black O and a tiny 1 on it. Obviously, she’s the letter O. What other letter would she choose? I suggested the Q since it has the highest value in Scrabble but she thinks I’m kind of stupid, so there’s that.
Wednesday is…oh, crap, what the hell is Wednesday? Oh, wait, it’s class color day. They’re calling it Battleship day. It’s a huge stretch but they’re kind of pitting each class against each other and the class that has the most kids wearing their assigned color wins. Whatever, it’s stupid but the kids love it so yeah.
O’s class color is orange. I did not buy a new orange shirt for her. Thankfully, the girls are the ages/sizes that they can wear each other’s clothes. Sure, Lyss is taller but they don’t borrow each other pants as often as shirts. Liv’s shirts tend to be a little short on Lyss, but that doesn’t bother her at all. A’s shirts are a little long on O but that doesn’t bother me at all. So it’s win/win/tie.
The sophomores were assigned the color pink this year. Lucky us, each year, there is a Homecoming T-shirt you can buy from the local sporting goods store. Each of the four high school classes are given a color and those shirts are printed and sold to gullible parents just like me.
Class color day is the day for which Alyssa made her tutu. She and my mom made a tutu out of blush and bashful, two shades of pink, one is much deeper than the other. She’s also got pink and white striped socks and something else, I’m sure. She’s going all out. I excited for both of them. This is a fun time for them.
Thursday is another day that’s different for the high school from the elementary. The elementary school’s theme for Thursday is Mix-up day. I have a couple of options for Olivia. I set out a pair of Christmas pants that she can pair with a Halloween shirt if she wants or she can wear a striped shirt (orange and white) with some chevron pants (black and white.) We’ll see.
Alyssa’s theme for Thursday is Nerd day. I’m leaving that one up to her. I’m not the best judge on what’s nerdy versus just comfy. What can I say? I’m a total nerd and I’m okay with that. I’d say don’t @ me but, well, I can’t quite pull that cool shit off.
Friday is, of course, Bomber Blue and Gray day. Because why not? Not that Olivia will go to the game that night, let’s not get carried away. But she will wear blue and gray to school and fit right in. She probably doesn’t even know (or care) that this whole spirit week thing culminates in the football game. As far as she’s concerned, football can go screw itself. I’m kind of with her on that one…
Then there’s the dance on Saturday. I have to go tonight (Monday) and order flowers for the dance. Yay! More money to spend. But it’s fine. It’ll be great and we’re over here making memories.
Reading over this, it’s reading a bit more snarky than I’d intended but you know what? Screw it. I’m tired. I have a headache and this spirt week stuff is wearing me right out.
Last week it was work. This week it’s spirit week. Next week it will be something else.
Today was ‘Dress as your favorite Candy’ day for Alyssa and hat day for Olivia. They sometimes make different days for the Jr. High/High school versus the elementary school. I don’t know why, they just do.
Olivia was worried about this, though. See, last week, on Friday, they announced over intercom all the spirit days and Liv was fretful this morning that she’d be the only kid in a hat since they (whoever did the announcing) hadn’t said anything about hats.
I assured her that other parents check the school website as much as I do and it would all be fine. She wasn’t so sure and decided she’d pack her headband that held a tiny crown (so cute!) in her backpack and put it on once she was sure other kids were wearing hats. The leggings she was wearing could be said to look like they had gummy jewels on them, so she was set for wearing candy if she needed to be. Not that she’d explain herself to anyone, I mean, let’s not get crazy.
Alyssa wore a red t-shirt on which she’d painted a white S. She also wore a rainbow tutu she borrowed from her sister (no, NOT Jessica, duh) and polished her nails rainbow colors. She was, obviously, a skittle. She was going to suggest people “Taste the rainbow” as often as she could throughout the day.
Tomorrow is dress as a game piece. They’re both going as Scrabble tiles. Alyssa gave $5 to a classmate whose mom was going to make a bunch of t-shirts to spell out something about the sophomore class or you know, something. That woman, whoever she is, is way more ambitious than I could ever hope to be.
I bought a white t-shirt for Olivia, dyed it tan, and drew a black O and a tiny 1 on it. Obviously, she’s the letter O. What other letter would she choose? I suggested the Q since it has the highest value in Scrabble but she thinks I’m kind of stupid, so there’s that.
Wednesday is…oh, crap, what the hell is Wednesday? Oh, wait, it’s class color day. They’re calling it Battleship day. It’s a huge stretch but they’re kind of pitting each class against each other and the class that has the most kids wearing their assigned color wins. Whatever, it’s stupid but the kids love it so yeah.
O’s class color is orange. I did not buy a new orange shirt for her. Thankfully, the girls are the ages/sizes that they can wear each other’s clothes. Sure, Lyss is taller but they don’t borrow each other pants as often as shirts. Liv’s shirts tend to be a little short on Lyss, but that doesn’t bother her at all. A’s shirts are a little long on O but that doesn’t bother me at all. So it’s win/win/tie.
The sophomores were assigned the color pink this year. Lucky us, each year, there is a Homecoming T-shirt you can buy from the local sporting goods store. Each of the four high school classes are given a color and those shirts are printed and sold to gullible parents just like me.
Class color day is the day for which Alyssa made her tutu. She and my mom made a tutu out of blush and bashful, two shades of pink, one is much deeper than the other. She’s also got pink and white striped socks and something else, I’m sure. She’s going all out. I excited for both of them. This is a fun time for them.
Thursday is another day that’s different for the high school from the elementary. The elementary school’s theme for Thursday is Mix-up day. I have a couple of options for Olivia. I set out a pair of Christmas pants that she can pair with a Halloween shirt if she wants or she can wear a striped shirt (orange and white) with some chevron pants (black and white.) We’ll see.
Alyssa’s theme for Thursday is Nerd day. I’m leaving that one up to her. I’m not the best judge on what’s nerdy versus just comfy. What can I say? I’m a total nerd and I’m okay with that. I’d say don’t @ me but, well, I can’t quite pull that cool shit off.
Friday is, of course, Bomber Blue and Gray day. Because why not? Not that Olivia will go to the game that night, let’s not get carried away. But she will wear blue and gray to school and fit right in. She probably doesn’t even know (or care) that this whole spirit week thing culminates in the football game. As far as she’s concerned, football can go screw itself. I’m kind of with her on that one…
Then there’s the dance on Saturday. I have to go tonight (Monday) and order flowers for the dance. Yay! More money to spend. But it’s fine. It’ll be great and we’re over here making memories.
Reading over this, it’s reading a bit more snarky than I’d intended but you know what? Screw it. I’m tired. I have a headache and this spirt week stuff is wearing me right out.
Last week it was work. This week it’s spirit week. Next week it will be something else.
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