Ben and I are so, so blessed sometimes. Yes, "sometimes." I mean, breast cancer. Children with mental illness. Me with mental illness. Job issues. 'Nuf said.
But then, sometimes, something amazing happens:
(Ugh, I'm using Ben's work computer, which is an Apple, and it took like ten minutes for me to figure out how to put this picture here. Me no likey.)
I guess one of the "perks" of Ben's job is that he has a few clients with a few properties. And these clients really are just so nice. We went to Hawaii last year and stayed at a client's rental in Oahu, free of charge - we just had to get there, entertain ourselves, and get home. Amazing!
And then these clients, at whose place in Portland my mom and I stayed after surgery (Ben calls it "surgerrhea," and now I mentally say that every time I say "surgery"), have a place on the Oregon coast, Cannon Beach to be exact. They're all, "Go stay at our beach house, free!" The nicest people EVER!!
Because of some weirdness in scheduling with a checkup appointment for me in Portland and dropping the kids off at Camp Kesem, or, as I like to call it, Free Camp for the Rest of Your Life for the Price of a Parent Having Had Cancer, we came to the coast last weekend, dropped the kids off at camp yesterday, then Ben and I came back to the coast for the entire week!! Then we'll grab the kids and come back to the coast this weekend, and then home.
I quite honestly think that this is our first family vacation since...Dylan was a baby? Usually, if Ben and I are able to scrape together enough money, we just go by ourselves - vacationing a family of six is really spendy. But having the kids with us is actually pretty fun!! Even though we forgot Dylan's ADHD meds. That makes things pretty tough. But he had lots of places to gallop around like a little colt. That boy is all limbs right now. And almost as tall as me. It's so weird to give him a hug, and he's, like, my size. With bigger feet than me. And he could probably beat me up, if he wanted to. Which he wouldn't. He thinks I am the BEST. The feeling is mutual.
Haha! He asked to be buried in the sand, and Gage kept just kind of throwing sand in the general direction of Dylan's face. He kept having to spit it out of his mouth. And Sadie garnished Dylan's head with a sprig of some nearby bush. Haha! When we checked the kids in at camp yesterday, they did a lice check, and this girl is like, "Whoa, I'm seeing a ton of black dots on this kid's hair; can you come over here, Sass?" (They go by nicknames at Camp Kesem. One of the nurse's names is Sass.) I was like, "Um, well, we did bury him in sand yesterday..." They determined that yes, indeed, the black dots are sand and not lice babies.
So. Cannon Beach is a really small little town - it does have a small grocery store, but it's really overpriced, so you have to drive down the road to Seaside to get food for a decent price. Depending on the time of day you go, it could take you five minutes or an hour. We ended up going over there twice on Saturday to get supplies, and I'm pretty sure half of Portland was clogging Highway 101, desperate to get out of the heat. We've been mainly staying put, but I'm begging Ben for a little detour to Tillamook (Cheese!!! My obsession!) and a Geek Out Trip to Astoria to see the places they filmed Goonies. We'll see how the week goes. We have to be judicious in our spending. August is an expensive month, what with Gage's and Sadie's birthdays.
When we got here on Friday, we made a beeline for the shore - just a short walk from the house. I dropped all my stuff and walked straight to the water. There is just something about the ocean. I LOVE the beach. It's just so healing. Huge. Majestic. I don't ever do a ton of swimming in it - saltwater makes me yak - but I appreciate it so much. I got a little weepy, standing there. It had been...9 years? Since I had seen the ocean. Far too long.
We all attempted to wade in the water, but it just, um, HURT. There are a select few of you that will understand this comparison, but here's the best way I can think to describe it: When I was a young woman, we went to camp every year at Camp Darby. Running through camp is a creek. With the COLDEST water. Snow runoff. Straight from ice form to water form. You can earn a bead for your camp necklace by doing a thing called The Polar Bear - I think you have to sit to waist-deep in this creek for...one minute? Five? I can't remember. I just remember sobbing from the pain. Everyone sobbing and screaming. Haha! I have pictures. Proof! They're at home. I'll have to put some on here. It's intense. But then you get this really awesome bead for your necklace. And bragging rights.
So yeah, this water is painful to stand in.
So I just parked my bumb in a chair 'neath an umbrella and watched the ninos attempt to make sandcastles sans sand toys.
Yep, we forgot to pack them, along with Dyl's meds, AND Micah's meds. Sigh... I was wondering why Micah had been so very emotional the past few days, and had been complaining of stomach pain. Duhhhhh. I hadn't refilled his meds, and he hadn't told me he was out. And I was on hydrocodones. I was doing well if I was able to just keep my eyes from crossing. I had to literally concentrate to keep them from just....woop!....meeting each other at my nose. My poor son has been going through withdrawals from going without anxiety medication. Trust me, that is no picnic. Luckily, Sass has my back and was able to pick them up from a local Walgreens today. My son will be back to his usual sullen self, rather than his Actor-in-a-Melodrama Self.
Friday was just perfect. In fact, it was just plain old hot. I have been assured that this is weird for the Oregon coast. Ben, having had melanoma, doesn't take any chances in the sun anymore:
Micah is on a quest to find seashells. He made quite the haul of broken ones. Danged seagulls.
Cannon Beach has this huge rock outcropping called Haystack. You can see it in the background. Gorgeous! So that's the view to the left. The view to the right:
Pristine.
And, you know, sunset. I can't get enough of sunset on the coast:
Saturday was reeeeeeally cold and foggy. We spent most of the morning indoors. Which was an interessant situation, because cable is currently not installed. So no TV. No electronics. Just us and some puzzles and games. And can I just say that it was so much fun???
Do kids ever play dominoes like they're meant to be played? Haha! Actually, Sadie and I had a rousing game of Mexican Train after the boys got tired of standing them up and knocking them down. In Dylan's case. In Micah's case, they kept falling before he got them all ready, and he would break down sobbing. Or Gage would come over and mischievously knock them over. And Micah would break down sobbing. Or he didn't feel like the dominoes were divided equally among the brothers. And he would break down sobbing. Poor kid. Anxiety is a beast.
It was a blast. It reminded me of staying at my grandparents' cabin at Palisades Lake. Playing Blackjack and betting with Skittles, packing all our food there and eating in every night... such good memories.
Oh, and Dylan was introduced to the VHS tape. Haha! The owners of the beach house have a VHS player and a bunch of tapes, so he and Sades watched Back to the Future and E.T. A sample from a conversation between Dylan and Ben:
Dylan: Dad, why won't this play?
Ben: Um, it looks like you need to rewind the tape.
Dylan: Re....wind??
Ben: Yeah.
Dylan: What does..."rewind" mean?
Ben: Oh! Um, you push this button right here to make the tape wind backwards to the beginning. See this brown tape stuff here through the clear plastic window on this tape? The images are on the brown tape stuff. And it slowly winds onto this spindle as you watch the movie. So you need to wind it the other way in order for it to play from the beginning.
Dylan: Whoa.
Ben: And don't forget to rewind it again after you're done!
Dylan: Why? Can't the next person...rewind....it when they're ready to watch it?
Ben: It's just a courtesy. Be kind, rewind!
Dylan: Huh?
Haha! Priceless.
Even though it was still butt cold, the kids wanted to play on the beach again that afternoon:
You can't even see haystack! It was so foggy, all day. Sadie is also all arms and legs - did you notice? I have gangly kids. She'd better get a volleyball scholarship.
The two older boys and Dad took a little trip down to the shore at night, during low tides, to check out the tidal pools and now-bare outcroppings:
The green things in the below picture are anemones. And you can see the starfish in the above picture. On the way home, Dylan told Micah a scary ghost story that he learned at Camp Caldera, where he was last week, or, as I like to call it, Two Years Ago a Boy Bullied Me and I Overreacted and Made Threats and Was Suspended for Two Weeks and Invited to This Club for Troubled Teens Which They Call Camp Caldera But Nobody Ever Really Says that It's for Troubled Teens Camp.
So then Micah comes into the house just fa-reaking out, refusing to stay in the cute little room that he had decided was his room to sleep in for the weekend... Poor little anxious kid. He did NOT need to hear ghost stories. He's going through anxiety pill withdrawals, for heck's sake.
Then, of course, Gage fed off of Micah's freaking out and freaked out himself, and then HE decided not to sleep in the little room that he had decided was his for the weekend, so he and Sadie squished on a floor mattress, and Micah, uncharacteristically, ASKED to share with Dylan (those two rarely get along), so he slept on a couch and Dylan slept on a hideaway bed, and Micah, having Anxiety Bladder, peed on his couch as he slept.
Poor kid.
Don't worry. I cleaned it really good. It's not like the pee couch in Seinfeld.
Yesterday, we took the kids to Camp Kesem. I didn't take any pictures - I should have. But we got them all squared away. We had really prepared the people in charge for Gage and his needs, and he has his very own counselor! The counselor's name is Brick. He has a family member with autism and knows his stuff. He seems really compassionate and awesome. Another counselor helping Gage is named Sports. Gage picked his bunk bed and unpacked his little toothbrush and everything, and I talked to Sports and Brick about some good strategies to help Gage deal with transitions, his sensory issues, etc. I had prepped Gage all week by making a Social Story for him - ideally, a social story is a little book with pictures to show where he would stay, what it would look like, where he would eat, etc. I was lazy and just showed him all the pictures on the computer. Which worked just as well. He did great when we dropped him off. No tears. The kids will have a great week.
We're back at the coast today, and it is quiiiiiet. Ben has to work 8 hours a day from here, still. I'm making sure the house is spic and span and cooking for us two. And....putting together a lot of puzzles. And doing a ton of reading. Haha! It's a little weird. But lovely. I'm healing wonderfully, standing up a little straighter, able to do more, totally off hydrocodones (but still relying heavily on ibuprofen and Tylenol), etc. This is a great place to heal.
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Monday, August 22, 2016
Saturday, August 13, 2016
The New Ladies
Heyyyyyy! I'm back! And trying to type while mainly reclined. So far, just these past 16 words or so, it's hurting me in this general area:
Right?? So I came out of surgery with like 14 tubes coming out of me, which I expected. What I did not expect was random bruising on my arms:
I wish these pictures could do it justice. Seriously. I don't know WHAT went on there. I remember them putting in two IV's, both on my right arm, because my left arm has lymphedema and had a big old pink bracelet to remind them about that - it is a no cut, no pressure, and no beat-it-up-with-baseball-bat zone.
My mom and I have been trying to figure out what on earth is going on there (and I kept forgetting to ask the surgeon when she checked in on me each day), and she said that she heard that sometimes, a patient is under, and the surgeon is hooking up monitors and stuff, and even though the patient is out of it, they aren't, like, fully out of it? And they start fighting the nurses and surgeons and assistants or something?? I think that is terrifying and fascinating. It makes me a little proud of my bruises. I mean, attackers, beware!! I now know that I would fight like crazy if attacked. I'm a little scrappy. Who knew?
And, you know, I can't show you pictures of my surgery site, because, now, what used to be my muffin top are breasts. It's so weird. And amazing! They're so sooooooft!! I forgot about how soft original boobs are. And these aren't original, but they're fatty like unto original ones. I was like, "Oh yeah! Side boob! Women have side boob!!" And I keep bumping into them when I'm, like, walking. Or pouring myself a drink. I have to maneuver around them now! Crazy stuff.
Sorry I'm all over the place. Blame the hydrocodones. I guess this should be more of a linear retelling, but I'm just popping all over the place.
So you know, my ma and I drove into Portland, found the apartment, got all settled, etc. We discovered that the closest grocery store was a Whole Foods, so we walked there and got some supplies for breakfasts and stuff for Mom. I really wanted to buy these amazing herbal soaps in the doorway, but I kept the urge under control. I mean, lemongrass basil soap?? So cool! We ate at what we thought would be a 12-ish dollars per meal place, and it turned out to be a 20-ish dollars per meal place, which was an unhappy surprise. We should have known. It is downtown Portland, after all. We drove to the hospital to make sure my mom felt like she knew where she was going. I showered, and we settled down to sleep (my mom is really a wiggler; I was like, "Are you Gage? Hold still!"). We woke up, I did all the anti-bacterial washing stuff yet again, and we headed to the hospital.
And you know, it takes forever to talk to 25 people about the procedure you're doing, making sure everyone is on the same page, etc. They gave me my IV to put me to sleep, and my mom got really weepy. She's just so awesome. I love her. I bid her adieu, and that's really all I remember.
After a couple of hours, they came out and let my mom know that it had taken a really long time to get my body ready for this surgery. Something about low blood pressure (it's been a prob ever since chemo). But maybe this is when they struggled with me and decided to get out a hammer and hit my arms repeatedly. As a consequence, I didn't get out of surgery until after ten at night.
They had me in the intensive care unit for the first...two or three days? It was just supposed to be one day, but my new left boob was struggling. They have these monitors that they use to check the blood flow, and you actually listen for the flow. If things are going well, you hear the blood flowing back and forth, back and forth, with each heart beat. It sounds, to me, just like an ultrasound, when you're pregnant, and they listen for baby's heartbeat. So when the blood flow is working well, you hear this whoosh-whoosh! My right boob is an A+ student. My left boob is like a C student.
Apparently, they use fat from your lower right abdomen for your left boob, and vice versa for your right. I'm not sure why. I had a hysterectomy several years ago, and my surgeon said that there was soooo much scarring in my right abdomen, the worst she's ever seen. THE WORST SHE HAS EVER SEEN. What??? I mean, I knew that it was a hard recovery after my hysterectomy, but... it makes me a little mad at my former gynie/surgeon. Anyways. For whatever reason, I was really scarred up on my right abdomen, so it was hard to harvest fat/blood cells from there. She even had to take some of my muscle right there in order for the operation to work out at all. As a consequence, my left side feels a little harder and a lot more perky. It feels a little bit like a tissue expander again. Maybe not as uncomfortable.
So it was a little nerve-wracking to have them check my boobs every single hour for three days straight, praying that the boob was there to stay. It fought well and is doing great.
My tummy is now...tucked. It feels really, really tight. I have to always have a pillow under my knees for a couple of weeks, because if my legs are straight while lying down, it's just too dang tight in my lower abdomen. I swear you could bounce a quarter of my tummy, guys. It's crazy and really, really wonderful. And my new belly button looks like a heart. Not kidding. When it stops looking gross, I'll take a pic and put it on here.
So after being in the ICU for a few days, they put me into the cancer wing of the hospital, which I liked. It was very quiet. The view from my window:
My nurses were nice - my night nurses were nicer than my day nurses, and I wondered why that is... It's like the meaner, older, stricter teachers in the day, and the young, fun teachers at night. I found that I'm a little bit of a rebel when I have narcotics in me. I was only supposed to go pee if I called a nurse first. And I'm like, I'm fine. I kept moving my arms outside of the range I'm supposed to, but that's more forgetfulness than willful disobedience. I wasn't walking as hunched over as I was supposed to... I pulled out some staples with my fingernails...
Kay, these staples were RIDICULOUS. You don't need to staple a cord to a person's chest to keep it in place. It's called medical tape, friends. And they itched so badly. So one day after a disgusting dinner, I dug those suckers out and gifted them to the food person to take away. I have all these red dots on my tummy and between the two mounds on my chest. I thought I had scratched hard enough to draw blood (I didn't react very well to the IV painkillers I was first put on), but no, those marks are from STAPLES. All over my tummy. I did remember to ask my surgeon about them, and she said that sometimes they need to hold some flesh somewhere for awhile during surgery. So they use staples, apparently. I can't pretend to know their business, but it just...makes me uncomfortable, you know? I'm not un piece du papier!
The catheter left me with a UTI, and the doctors wanted this culture to come back instead of taking my word for it. I've had so many of these, I know exactly what I'm dealing with, but...we had to wait for the results. The results showed that I was right, and they put me on a pretty powerful antibiotic, but they had to change my anxiety sleeping meds because of drug interaction stuff. So I didn't sleep for a whole night, which I wasn't a fan of. After that, they gave me a sleeping pill until the end of my antibiotic.
Luckily, the days went by quickly (thank you, Olympics!), and I was released Wednesday to go to the apartment in Portland.
My surgeon said I could just go all the way back to Bend, but I worried about driving that far so quickly after being released, so Ma and I settled in at the apartment. Mom took excellent care of me. Washed my hair, changed my dressings, made sure I was taking my meds on time, etc. It was so nice to have her there.
My hair has been looking a lot like Ted's in Bill and Ted's Excellent Adventure. Good times.
On Thursday night, I had a full-on panic attack. I'm starting to recognize these better now. I was certain that the hardness in my left boob was because it was being rejected by my body, and that I needed to go in and see the surgeon STAT. And I missed Ben and the kids so badly. I just sobbed and sobbed and begged my mom to take me home right THEN. Luckily, the lady at the surgeon's office kind of calmed me down, and my mom promised that we could go home yesterday.
The ride home ended up being a bit of a fiasco. We went a different way than usual, which was beautiful, but very windey. I spent much of the time feeling nauseated. And it took twice as long as it should have to get home. Lesson learned.
It wiped me out pretty badly, our driving misadventure. So I've been resting all day. Mom, Ben, and the kids went swimming, and I wanted to go watch, but it's an outdoor pool, and it's hot outside, and I just feel kind of gross today, so I'm chilling inside. And writing this meandering post. Sorry, guys. My razor-sharp wit is temporarily dull! Hahaha!
I had another sobbing episode last night at bedtime. I think it was partially because of relief; I just can't believe that this long, long road is, for the most part, ending. It's been two difficult years, and I just can't believe that I don't have to have this surgery weighing me down anymore. But I also cried because I'm trapped in my body yet again. I keep getting knocked down hard and having to climb back out, and it's just getting really old. And I'm still at the place where I need help getting out of bed, showering, etc. That's tough. I'll just have to really take it easy and rely on the help of others. My mom went above and beyond to help me, when she was feeling pretty crummy herself. Thanks so much, mommy!! And Ben's mom is coming tonight to help for a couple of weeks. Thank heavens.
So yeah, if you're in Bend, come on over and say hi! Because I'm just friggin' stuck inside for awhile. Sigh. But I have to remember how blessed I am, and how thankful I feel. With the Lord's help, I can get through these next several weeks of recovery. Peace out!
Right?? So I came out of surgery with like 14 tubes coming out of me, which I expected. What I did not expect was random bruising on my arms:
I wish these pictures could do it justice. Seriously. I don't know WHAT went on there. I remember them putting in two IV's, both on my right arm, because my left arm has lymphedema and had a big old pink bracelet to remind them about that - it is a no cut, no pressure, and no beat-it-up-with-baseball-bat zone.
My mom and I have been trying to figure out what on earth is going on there (and I kept forgetting to ask the surgeon when she checked in on me each day), and she said that she heard that sometimes, a patient is under, and the surgeon is hooking up monitors and stuff, and even though the patient is out of it, they aren't, like, fully out of it? And they start fighting the nurses and surgeons and assistants or something?? I think that is terrifying and fascinating. It makes me a little proud of my bruises. I mean, attackers, beware!! I now know that I would fight like crazy if attacked. I'm a little scrappy. Who knew?
And, you know, I can't show you pictures of my surgery site, because, now, what used to be my muffin top are breasts. It's so weird. And amazing! They're so sooooooft!! I forgot about how soft original boobs are. And these aren't original, but they're fatty like unto original ones. I was like, "Oh yeah! Side boob! Women have side boob!!" And I keep bumping into them when I'm, like, walking. Or pouring myself a drink. I have to maneuver around them now! Crazy stuff.
Sorry I'm all over the place. Blame the hydrocodones. I guess this should be more of a linear retelling, but I'm just popping all over the place.
So you know, my ma and I drove into Portland, found the apartment, got all settled, etc. We discovered that the closest grocery store was a Whole Foods, so we walked there and got some supplies for breakfasts and stuff for Mom. I really wanted to buy these amazing herbal soaps in the doorway, but I kept the urge under control. I mean, lemongrass basil soap?? So cool! We ate at what we thought would be a 12-ish dollars per meal place, and it turned out to be a 20-ish dollars per meal place, which was an unhappy surprise. We should have known. It is downtown Portland, after all. We drove to the hospital to make sure my mom felt like she knew where she was going. I showered, and we settled down to sleep (my mom is really a wiggler; I was like, "Are you Gage? Hold still!"). We woke up, I did all the anti-bacterial washing stuff yet again, and we headed to the hospital.
And you know, it takes forever to talk to 25 people about the procedure you're doing, making sure everyone is on the same page, etc. They gave me my IV to put me to sleep, and my mom got really weepy. She's just so awesome. I love her. I bid her adieu, and that's really all I remember.
After a couple of hours, they came out and let my mom know that it had taken a really long time to get my body ready for this surgery. Something about low blood pressure (it's been a prob ever since chemo). But maybe this is when they struggled with me and decided to get out a hammer and hit my arms repeatedly. As a consequence, I didn't get out of surgery until after ten at night.
They had me in the intensive care unit for the first...two or three days? It was just supposed to be one day, but my new left boob was struggling. They have these monitors that they use to check the blood flow, and you actually listen for the flow. If things are going well, you hear the blood flowing back and forth, back and forth, with each heart beat. It sounds, to me, just like an ultrasound, when you're pregnant, and they listen for baby's heartbeat. So when the blood flow is working well, you hear this whoosh-whoosh! My right boob is an A+ student. My left boob is like a C student.
Apparently, they use fat from your lower right abdomen for your left boob, and vice versa for your right. I'm not sure why. I had a hysterectomy several years ago, and my surgeon said that there was soooo much scarring in my right abdomen, the worst she's ever seen. THE WORST SHE HAS EVER SEEN. What??? I mean, I knew that it was a hard recovery after my hysterectomy, but... it makes me a little mad at my former gynie/surgeon. Anyways. For whatever reason, I was really scarred up on my right abdomen, so it was hard to harvest fat/blood cells from there. She even had to take some of my muscle right there in order for the operation to work out at all. As a consequence, my left side feels a little harder and a lot more perky. It feels a little bit like a tissue expander again. Maybe not as uncomfortable.
So it was a little nerve-wracking to have them check my boobs every single hour for three days straight, praying that the boob was there to stay. It fought well and is doing great.
My tummy is now...tucked. It feels really, really tight. I have to always have a pillow under my knees for a couple of weeks, because if my legs are straight while lying down, it's just too dang tight in my lower abdomen. I swear you could bounce a quarter of my tummy, guys. It's crazy and really, really wonderful. And my new belly button looks like a heart. Not kidding. When it stops looking gross, I'll take a pic and put it on here.
So after being in the ICU for a few days, they put me into the cancer wing of the hospital, which I liked. It was very quiet. The view from my window:
My nurses were nice - my night nurses were nicer than my day nurses, and I wondered why that is... It's like the meaner, older, stricter teachers in the day, and the young, fun teachers at night. I found that I'm a little bit of a rebel when I have narcotics in me. I was only supposed to go pee if I called a nurse first. And I'm like, I'm fine. I kept moving my arms outside of the range I'm supposed to, but that's more forgetfulness than willful disobedience. I wasn't walking as hunched over as I was supposed to... I pulled out some staples with my fingernails...
Kay, these staples were RIDICULOUS. You don't need to staple a cord to a person's chest to keep it in place. It's called medical tape, friends. And they itched so badly. So one day after a disgusting dinner, I dug those suckers out and gifted them to the food person to take away. I have all these red dots on my tummy and between the two mounds on my chest. I thought I had scratched hard enough to draw blood (I didn't react very well to the IV painkillers I was first put on), but no, those marks are from STAPLES. All over my tummy. I did remember to ask my surgeon about them, and she said that sometimes they need to hold some flesh somewhere for awhile during surgery. So they use staples, apparently. I can't pretend to know their business, but it just...makes me uncomfortable, you know? I'm not un piece du papier!
The catheter left me with a UTI, and the doctors wanted this culture to come back instead of taking my word for it. I've had so many of these, I know exactly what I'm dealing with, but...we had to wait for the results. The results showed that I was right, and they put me on a pretty powerful antibiotic, but they had to change my anxiety sleeping meds because of drug interaction stuff. So I didn't sleep for a whole night, which I wasn't a fan of. After that, they gave me a sleeping pill until the end of my antibiotic.
Luckily, the days went by quickly (thank you, Olympics!), and I was released Wednesday to go to the apartment in Portland.
My surgeon said I could just go all the way back to Bend, but I worried about driving that far so quickly after being released, so Ma and I settled in at the apartment. Mom took excellent care of me. Washed my hair, changed my dressings, made sure I was taking my meds on time, etc. It was so nice to have her there.
My hair has been looking a lot like Ted's in Bill and Ted's Excellent Adventure. Good times.
On Thursday night, I had a full-on panic attack. I'm starting to recognize these better now. I was certain that the hardness in my left boob was because it was being rejected by my body, and that I needed to go in and see the surgeon STAT. And I missed Ben and the kids so badly. I just sobbed and sobbed and begged my mom to take me home right THEN. Luckily, the lady at the surgeon's office kind of calmed me down, and my mom promised that we could go home yesterday.
The ride home ended up being a bit of a fiasco. We went a different way than usual, which was beautiful, but very windey. I spent much of the time feeling nauseated. And it took twice as long as it should have to get home. Lesson learned.
It wiped me out pretty badly, our driving misadventure. So I've been resting all day. Mom, Ben, and the kids went swimming, and I wanted to go watch, but it's an outdoor pool, and it's hot outside, and I just feel kind of gross today, so I'm chilling inside. And writing this meandering post. Sorry, guys. My razor-sharp wit is temporarily dull! Hahaha!
I had another sobbing episode last night at bedtime. I think it was partially because of relief; I just can't believe that this long, long road is, for the most part, ending. It's been two difficult years, and I just can't believe that I don't have to have this surgery weighing me down anymore. But I also cried because I'm trapped in my body yet again. I keep getting knocked down hard and having to climb back out, and it's just getting really old. And I'm still at the place where I need help getting out of bed, showering, etc. That's tough. I'll just have to really take it easy and rely on the help of others. My mom went above and beyond to help me, when she was feeling pretty crummy herself. Thanks so much, mommy!! And Ben's mom is coming tonight to help for a couple of weeks. Thank heavens.
So yeah, if you're in Bend, come on over and say hi! Because I'm just friggin' stuck inside for awhile. Sigh. But I have to remember how blessed I am, and how thankful I feel. With the Lord's help, I can get through these next several weeks of recovery. Peace out!
Friday, July 29, 2016
It's the Final Countdowwwwwwwn!!!
BEST. COMMERCIAL. EVER.
So yeah, my surgery is one week from today. Am I nervous? Yeah. Even more so than two weeks ago, when I was supposed to have my surgery. Sheesh Loueesh. I've had two more weeks to get even more nervous and anxious and sleepless. The suspense is KILLING me!! I know it will be okay. I do. I think most of my anxiety is centered around getting everything done that I need to before leaving town, and in making sure Ben remembers all of the appointments and things to which he has to take the kids in my absence. And you know, driving in downtown Portland, and figuring out the trolley system for Mom so that she doesn't have to drive in downtown Portland when she goes back and forth from the apartment where we'll stay a l'hopital. Whether I'll be able to set up wifi in the apartment. Stupid crap like that.
When I said that I don't worry so much about the little crap, that was mainly true. I mean, I'm still me, right? So I get anxious about stuff. But I'm maybe not as edgy as I used to be. Which might be because I'm on really good meds..... Haha!
And yes, I've double and triple-checked to make sure this thing is really going down. I got the call from l'hopital to do all the pre-check-in stuff. I can't remember half the instructions they gave me. Am I supposed to avoid deodorant starting the day before surgery? Two days before? How many days before am I supposed to stop shaving my armpits? It's a little foggy. They really should send e-mails with this stuff. I mean, hi, they deal with chemo-brained patients all the time; you would think they'd put all of this in writing! I do remember her telling me that I have to shower with anti-bacterial soap the night before surgery, and then shower again with the anti-bacterial the morning of surgery, that I have to wear freshly laundered jammies, sleep in freshly laundered sheets, and change into freshly laundered clothes to arrive a l'hopital.... The really interesting stuff is the stuff I remember.
Let's hope that my surgeon has forgiven Ben for swearing at her; I'd really hate to have her leave a rusty nail in my gut as retribution. Haha! Naw, I'm good. In case you missed it, my ma is going with me to Portland, and Ben is going to stay here with the ninos and work from home. I think it will be fun. We'll have to watch a whole bunch of British chick lit - we will have come full circle from when I was a Couch Person during chemo and we watched as many British miniseries and shows as we could. We'll probably still giggle quite a lot. Maybe even more so, because I'll have those huge painkillers in my system. Blood grenades, here I come!
I'm going to have a LOT of downtime in the next month or so, so you'll probably hear more from me than you ever cared to. And the writing will be.... interesting. I remember trying to write thank-you notes after my mastectomy, and then I just got too tired to make sure people actually received said thank-you notes. So maybe a month later, I pulled the pile out so that I could rip open the envelopes and add more thank-yous to each person - these people just kept helping and helping and helping, and I didn't want them to think I didn't appreciate all the different stuff they did, right? So I ripped open these envelopes, and I was like, "Who WROTE these???" The handwriting was unintelligible! And the sentences meandered all over the place. I mean, it was like, "ThankyousomuchforhelpmecanceryardbabysitbloodgrenadeshahabestpersonEVERmusthavemetin
heavensoulsisterseverdowithoutyou?"
Good times.
Am I nervous about the painkillers? Yep. They're hard to get off of. I think it's harder emotionally than physically to get off of them. Truly. It terrifies me.
Am I looking forward to staying "in hospital," as the Brits would say? YES!! I freakin' love l'hopital. I feel so safe there. Truly. Hospitals have helped me out many, many times. I love having someone to take care of me. I love drifting in and out of sleep. I love the reassurance of an IV bag. Love the catheter. DON'T love the food. But that's okay. I'll have my mom smuggle me in some good grub.
Kay, it's late, and I'm rambling, so I'll say hasta. You might hear from me again. If not, I'll see you on the other side! I'll be sure to keep you abreast of any further developments. Haha! That never gets old...
Two years ago today...
Oh my goodness, Ben and I just realized that I went in for my double mastectomy exactly two years ago today.
I feel like I've aged a lifetime since then.
I was sifting through pictures to find the above one, and I got a little emotional. I was dancing at Ben's neice's wedding. I was playing with my kids in Lake Chelan. I was loving my new house. I was gardening. I was so vibrant. So healthy.
So I thought.
As I progressed through those pictures, there's the above the picture, and then maybe a picture of a bouquet or two, and then.... nothing left in that summer folder on my desktop.
It was rough.
Not pictured are the demons I faced when my children were at sleepaway camp, Ben was already working in Bend, and my darling youngest was thousands of miles away. My darling dog - my dear, sweet Pepito! - was adopted into a new, loving home.
And I was alone. In the house I had hoped to grow old in.
There was so much loss, all at once - Ben's job, my cancer, Gage's autism diagnosis...
I think I'm still mourning in a lot of ways. I miss my old, vibrant body. I miss my extended family. I miss my dog. I'll never have feeling in my left upper arm, or anywhere on most of my torso, again. I miss not having to wear compression. I miss gardening. I miss a house where we could really spread out. I miss my Idaho friends.
However, also not pictured is the overwhelming outpouring of love and support I received from hundreds - I mean that literally - hundreds of people. People I had only met eight months before. People I grew up with. My family. Acquaintances. People very far away. People next door. They landscaped my yard and painted my house so that we could sell it. They watched my kids. My sister took my youngest to Chicago with her and provided life-changing intervention for him, being a caretaker for him for five whole months! My parents took me into their home so that they could care for me during the darkest hours I would face. I was surrounded, enveloped, in love.
Not pictured are the hours I spent suffering on the bathroom floor, the sopping wetness of my parents' poor guest bed from all the night sweats, the terror I felt as I watched my body disintegrate before my eyes. Not pictured is the panic that arose when I was rushed to the hospital with neutropenia and dehydration. Not pictured is the weird feeling you have when you're severely dehydrated - you get the feeling that people are trying to talk to you, begging you to drink, and you just don't care anymore. Not pictured is the relief you see when you see a nice, full IV bag that's emptying into your body. Not pictured is the strange burning you feel from deep inside after each chemo treatment - like a full-body blush. The pain from the shot that pumps up your white blood cells to fight infection. The incessant disinfecting, sanitizing, praying that I won't get sick anymore. The tear-filled FaceTime sessions with Ben and my kids. My shoebox full of medications.
Not pictured are the hours I spent curled in a chair next to my parents' fireplace, gaining light and knowledge and warmth from my Heavenly Father. Not pictured is the constant, continual love and support from family and friends that I received. Not pictured was a perfect re-alignment of my priorities. A life-changing re-alignment. That's what happens when you face death. Not pictured are the hours my dad stood in line in the frigid cold with Micah so that he could pet a reindeer. Or the hours my mom and I spent giggling, crying, and watching Elizabeth Gaskell movies, joking that I really was becoming long-suffering, because I had been suffering for soooo long... The small road trips she, Micah, and I took to see southeast Idaho in all of its autumn glory. The look in my dad's eyes whenever he came home from work and came straight to the couch to see how I was. The hours he spent looking over my EOB's and paying my bills for me. My mom stubbornly insisting upon taking my temperature, and me stubbornly avoiding it, because I didn't want it to be too high and have to go to the dang hospital again. My mom advocating for me with doctors and nurses when I was too weak to talk. My friend, Megs, and I spending as much time together as humanly possible before I would have to move. And the gifts! Oh, all the gifts people brought me and sent me and gave me. People are so good. People are so good. Not pictured is the lovely lady who gave me a chance to teach dance when I felt well enough, and how much that healed me every week. How it gave me something to look forward to.
If there was a word to describe how I feel after two years, it's this: grateful. I'm grateful that Heavenly Father saw fit, in his infinite knowledge, to let me stay on this earth a little bit longer. I had more work to do. I'm so grateful for the perspective this experience has given to me. All the little crap that used to bug me is not a big deal anymore. I'm a little more patient than I was before. A little more empathetic. I hug my kids more. I hug my husband more. I watch more sunsets. I laugh off things that used to offend me. I've truly gone through a refiner's fire to become better. Stronger. And I'm grateful for that.
Plus, now I get a chance to use the word "abreast" in a double entendre as often as possible. Example: Today I texted one of my dance bosses to let him know I'd be missing a teacher's meeting while in Portland. Then I said, "Be sure to keep me abreast of any information you discuss..."
His response, "Ha!" seemed to have a little discomfort behind it. Which I love. One of life's great pleasures is making men uncomfortable by talking about girl stuff. Haha!
I feel like I've aged a lifetime since then.
I was sifting through pictures to find the above one, and I got a little emotional. I was dancing at Ben's neice's wedding. I was playing with my kids in Lake Chelan. I was loving my new house. I was gardening. I was so vibrant. So healthy.
So I thought.
As I progressed through those pictures, there's the above the picture, and then maybe a picture of a bouquet or two, and then.... nothing left in that summer folder on my desktop.
It was rough.
Not pictured are the demons I faced when my children were at sleepaway camp, Ben was already working in Bend, and my darling youngest was thousands of miles away. My darling dog - my dear, sweet Pepito! - was adopted into a new, loving home.
And I was alone. In the house I had hoped to grow old in.
There was so much loss, all at once - Ben's job, my cancer, Gage's autism diagnosis...
I think I'm still mourning in a lot of ways. I miss my old, vibrant body. I miss my extended family. I miss my dog. I'll never have feeling in my left upper arm, or anywhere on most of my torso, again. I miss not having to wear compression. I miss gardening. I miss a house where we could really spread out. I miss my Idaho friends.
However, also not pictured is the overwhelming outpouring of love and support I received from hundreds - I mean that literally - hundreds of people. People I had only met eight months before. People I grew up with. My family. Acquaintances. People very far away. People next door. They landscaped my yard and painted my house so that we could sell it. They watched my kids. My sister took my youngest to Chicago with her and provided life-changing intervention for him, being a caretaker for him for five whole months! My parents took me into their home so that they could care for me during the darkest hours I would face. I was surrounded, enveloped, in love.
Not pictured are the hours I spent suffering on the bathroom floor, the sopping wetness of my parents' poor guest bed from all the night sweats, the terror I felt as I watched my body disintegrate before my eyes. Not pictured is the panic that arose when I was rushed to the hospital with neutropenia and dehydration. Not pictured is the weird feeling you have when you're severely dehydrated - you get the feeling that people are trying to talk to you, begging you to drink, and you just don't care anymore. Not pictured is the relief you see when you see a nice, full IV bag that's emptying into your body. Not pictured is the strange burning you feel from deep inside after each chemo treatment - like a full-body blush. The pain from the shot that pumps up your white blood cells to fight infection. The incessant disinfecting, sanitizing, praying that I won't get sick anymore. The tear-filled FaceTime sessions with Ben and my kids. My shoebox full of medications.
Not pictured are the hours I spent curled in a chair next to my parents' fireplace, gaining light and knowledge and warmth from my Heavenly Father. Not pictured is the constant, continual love and support from family and friends that I received. Not pictured was a perfect re-alignment of my priorities. A life-changing re-alignment. That's what happens when you face death. Not pictured are the hours my dad stood in line in the frigid cold with Micah so that he could pet a reindeer. Or the hours my mom and I spent giggling, crying, and watching Elizabeth Gaskell movies, joking that I really was becoming long-suffering, because I had been suffering for soooo long... The small road trips she, Micah, and I took to see southeast Idaho in all of its autumn glory. The look in my dad's eyes whenever he came home from work and came straight to the couch to see how I was. The hours he spent looking over my EOB's and paying my bills for me. My mom stubbornly insisting upon taking my temperature, and me stubbornly avoiding it, because I didn't want it to be too high and have to go to the dang hospital again. My mom advocating for me with doctors and nurses when I was too weak to talk. My friend, Megs, and I spending as much time together as humanly possible before I would have to move. And the gifts! Oh, all the gifts people brought me and sent me and gave me. People are so good. People are so good. Not pictured is the lovely lady who gave me a chance to teach dance when I felt well enough, and how much that healed me every week. How it gave me something to look forward to.
If there was a word to describe how I feel after two years, it's this: grateful. I'm grateful that Heavenly Father saw fit, in his infinite knowledge, to let me stay on this earth a little bit longer. I had more work to do. I'm so grateful for the perspective this experience has given to me. All the little crap that used to bug me is not a big deal anymore. I'm a little more patient than I was before. A little more empathetic. I hug my kids more. I hug my husband more. I watch more sunsets. I laugh off things that used to offend me. I've truly gone through a refiner's fire to become better. Stronger. And I'm grateful for that.
Plus, now I get a chance to use the word "abreast" in a double entendre as often as possible. Example: Today I texted one of my dance bosses to let him know I'd be missing a teacher's meeting while in Portland. Then I said, "Be sure to keep me abreast of any information you discuss..."
His response, "Ha!" seemed to have a little discomfort behind it. Which I love. One of life's great pleasures is making men uncomfortable by talking about girl stuff. Haha!
Thursday, July 21, 2016
Earplugs
I remember first learning about sensory perception/processing disorder. My adorbs friend, Shelly, told me about it - two of her kiddos have it. It's really hard to describe; this is a spectacular article that really explains it in easy-to-understand terms.
Little did I know, when I learned about it, that I would have a child who would struggle with it. Lots of autistic kids deal with sensory perception issues; Gage is hypersensitive in some ways and hyposensitive in some ways. His hypersensitivities:
Loud Noises
Exhibit A - Fourth of July Fireworks
Bright Light
Exhibit B - at Tumalo Falls. He might as well have been staring straight at the sun. He will only wear sunglasses for a few minutes, and refuses to wear a brimmed hat. Which leads us to....
Certain Fabrics
Exhibit C - at Richardson's Ranch near Madras, Oregon, in front of an enormous pile of lavender quartz - I die! I am OBSESSED with rocks. Anywho, notice the pants that Gage and Micah are wearing. They refer to them as "soft pants." Neither of them will wear jeans.
Certain Kinds of Touch
A light, tickling touch is unbearable to Gage, and sometimes he jerks his hand away from mine, or will arch backward when I try to bring him in for a hug. But other times, he comes to me for a hug (he usually likes to back up into my legs to receive a hug. Like a beeping, reversing FedEx truck. Haha!) or slips his hand in mine.
His spirit animal is a cat, I think. Only wants lovies when he initiates. :) I'm not offended. It's what he needs.
Now for Gage's hyposensitivities (a.k.a. He needs more input from his senses in the following ways - regular, day-to-day input isn't enough for him, and he seeks more):
Spatial Relationships and Moving the Body
Gage loves jumping, bumping and crashing activities... (bumper cars are a fave):
And deep pressure, like tight bear hugs. I worked a lot in special ed this past spring when I was subbing, and we had an autistic kid who craved deep pressure. There was a gymnastics mat - you know the kinds that fold up like an accordion, and then can be laid out flat? And his favorite thing was being squished between two layers of those gymnastics mats. His classroom aid would gently push on him from the top. He was like the patty in a hamburger.
Spatial Relationships and Head Position
Gage is in constant motion. He loves spinning around, rocking back and forth on the exercise ball, being tossed in the air (he loooves Ben tossing him high and onto our bed), and jumping on furniture and trampolines. One of his first phrases when he finally started speaking was "Jump jumping!" which, in Gage Speak, was "I want to jump on the trampoline!" We once had a trampoline. And a yard in which to put that trampoline. And a house which had a yard. We had a lot of things. Sigh.
Sometimes I get sad about that.
I digress.
So, as far as sensory perception disorder, there are kids who, when overstimulated, will cry, scream, get whiney, etc. And then there are those who will avoid the thing which is causing distress, running away from the noise, hiding in a quiet room... Gage is part of the first camp. We find that, when he's getting overstimulated, the best way for him to "reset" is to do anything involving vestibular motion - the spatial relationships and head position thing I just talked about. (And, BTDubs, my sister, Lexi, is the one who taught us ALLLLL of this stuff. She works in pediatric physical therapy, dealing with lots of kiddos who have sensory issues. She is amazing.) He'll ask for "head squishes" - gentle squeezing pressure on his skull with the palms of our hands. He'll start spinning around and around. He'll run back and forth between our front door and our back door, pausing at each door to jump up and down and flap his hands frantically. He looooves rocking back and forth on the exercise ball, forward and backward. Or he'll come for a hug and push to have both he and I rock dramatically left to right or front to back. Or he'll jump on the furniture.
My favorite. :)
I think all of us have a little bit of sensory stuff going on. I find, as I get older, that I am more and more sensitive. Something that has been off the charts sensitive for me, ever since chemo, is loud noises. Gage's occupational therapist says it's very common for people who have had chemo, which I found fascinating. I've done a little research on it, and it sounds like chemo will sometimes affect peoples' hearing. A lot of people who have undergone chemo start to have hearing loss, but I haven't really read anything that definitively talks about hearing sensitivity and chemo. But I believe the OT. She is sooooo wise, and has helped us so much.
For me, all of the small, background noises are the same as the important noises. For example, my fabulous friend, Sara, took me out to dinner for my birthday back in April. We were in a restaurant, and talking about this very topic, and to demonstrate, I said, "So that lady talking over there with her friend, the music over the speakers, the boy busing tables behind us, the cook frying things in the kitchen, and you and I talking, are all equally loud in my ears. It's like the volume for all of them is turned way, way up."
I've read some things that say that the extreme stress that cancer treatment causes can make you more sensitive to noise, which I also find interesting. That would describe the onset, but I'm trying to figure out why it's still hanging on.
Whatever the cause, it's obnoxious as heck. I've kept earplugs in my purse for Gage when we're in loud restaurants, etc. (He has a hard time keeping them in. I need to just buy a pair of those noise-canceling headphones for him.) But I find that I've started keeping a pair of earplugs for myself in my purse, as well. And then I added a pair to my catch-all area in the kitchen. Being Mom, I spend a LOT of time in the kitchen. And our living room is right next to the kitchen, great-room style. (Can a room that's, like, 30 feet by 15 feet be called a "great room"?) Ben seems to enjoy watching TV at eardrum-bursting decibel level in the living room. He also seems to enjoy tickling his children, which leads to them screaming either in glee (Gage) or dismay (Sadie). Ben also gets hyper sometimes and loves to sing in a falsetto opera - one of these days, I seriously think he's going to shatter the glass of his big, honking aquarium which sits in our living room. (I wonder if Ben is understimulated in his nice, quiet office all day and needs stimulation when he gets home...) Sometimes the kids will be yelling at each other in the living room. Or I'll have to put the fan on while I'm cooking on the stove top (which is as loud as a passing tornado, in my opinion). And it's all I can do to keep from running from the house, screaming and tearing my hair out. I'm a sensory avoider, as you can tell.
I use earplugs quite often in the car. Because of the whole falsetto operatic singing thing. And because Ben loves him some buttrock. Or the kids will be yelling at each other in the back of the car. (They are particularly adept at yelling at each other.) So I pop my earplugs in and slip off into oblivion.
I mean, I can still communicate with everyone while my plugs are in. I just feel like they put the noises back in the priority they should be - I can hear my kids when they're talking to me, and it drowns out the TV/the kids fighting while they do dishes/microwave fan crap that should stay in the background.
Before it dawned on me to use the earplugs, I had to take little sensory breaks in my bedroom, covers over my head, door locked, hands squeezed over my ears. I'm doing much better now that I've gots my beautiful little squishy, neon orange cylinders.
I also do yoga in my bedroom when things get a little too much. It really helps. My favorite is Yoga with Adriane on youtube. She's fantastic. I do yoga almost more for the mental side than the physical, I swear. I just crave that peaceful, quiet place that it takes me. All is right with the world when you've gotten your sweat on and are at the end of your workout, in savasana.
(How did they find this picture of me? As you can see, I've lost 40 pounds and grown boobs! You didn't know? Weird!)
Psych.
Actually, it's time for me to do some yoga for spinal health, so I will sign off for now.
Namaste.
Little did I know, when I learned about it, that I would have a child who would struggle with it. Lots of autistic kids deal with sensory perception issues; Gage is hypersensitive in some ways and hyposensitive in some ways. His hypersensitivities:
Loud Noises
Exhibit A - Fourth of July Fireworks
Bright Light
Exhibit B - at Tumalo Falls. He might as well have been staring straight at the sun. He will only wear sunglasses for a few minutes, and refuses to wear a brimmed hat. Which leads us to....
Certain Fabrics
Exhibit C - at Richardson's Ranch near Madras, Oregon, in front of an enormous pile of lavender quartz - I die! I am OBSESSED with rocks. Anywho, notice the pants that Gage and Micah are wearing. They refer to them as "soft pants." Neither of them will wear jeans.
Certain Kinds of Touch
A light, tickling touch is unbearable to Gage, and sometimes he jerks his hand away from mine, or will arch backward when I try to bring him in for a hug. But other times, he comes to me for a hug (he usually likes to back up into my legs to receive a hug. Like a beeping, reversing FedEx truck. Haha!) or slips his hand in mine.
His spirit animal is a cat, I think. Only wants lovies when he initiates. :) I'm not offended. It's what he needs.
Now for Gage's hyposensitivities (a.k.a. He needs more input from his senses in the following ways - regular, day-to-day input isn't enough for him, and he seeks more):
Spatial Relationships and Moving the Body
Gage loves jumping, bumping and crashing activities... (bumper cars are a fave):
And deep pressure, like tight bear hugs. I worked a lot in special ed this past spring when I was subbing, and we had an autistic kid who craved deep pressure. There was a gymnastics mat - you know the kinds that fold up like an accordion, and then can be laid out flat? And his favorite thing was being squished between two layers of those gymnastics mats. His classroom aid would gently push on him from the top. He was like the patty in a hamburger.
Spatial Relationships and Head Position
Gage is in constant motion. He loves spinning around, rocking back and forth on the exercise ball, being tossed in the air (he loooves Ben tossing him high and onto our bed), and jumping on furniture and trampolines. One of his first phrases when he finally started speaking was "Jump jumping!" which, in Gage Speak, was "I want to jump on the trampoline!" We once had a trampoline. And a yard in which to put that trampoline. And a house which had a yard. We had a lot of things. Sigh.
Sometimes I get sad about that.
I digress.
So, as far as sensory perception disorder, there are kids who, when overstimulated, will cry, scream, get whiney, etc. And then there are those who will avoid the thing which is causing distress, running away from the noise, hiding in a quiet room... Gage is part of the first camp. We find that, when he's getting overstimulated, the best way for him to "reset" is to do anything involving vestibular motion - the spatial relationships and head position thing I just talked about. (And, BTDubs, my sister, Lexi, is the one who taught us ALLLLL of this stuff. She works in pediatric physical therapy, dealing with lots of kiddos who have sensory issues. She is amazing.) He'll ask for "head squishes" - gentle squeezing pressure on his skull with the palms of our hands. He'll start spinning around and around. He'll run back and forth between our front door and our back door, pausing at each door to jump up and down and flap his hands frantically. He looooves rocking back and forth on the exercise ball, forward and backward. Or he'll come for a hug and push to have both he and I rock dramatically left to right or front to back. Or he'll jump on the furniture.
My favorite. :)
I think all of us have a little bit of sensory stuff going on. I find, as I get older, that I am more and more sensitive. Something that has been off the charts sensitive for me, ever since chemo, is loud noises. Gage's occupational therapist says it's very common for people who have had chemo, which I found fascinating. I've done a little research on it, and it sounds like chemo will sometimes affect peoples' hearing. A lot of people who have undergone chemo start to have hearing loss, but I haven't really read anything that definitively talks about hearing sensitivity and chemo. But I believe the OT. She is sooooo wise, and has helped us so much.
For me, all of the small, background noises are the same as the important noises. For example, my fabulous friend, Sara, took me out to dinner for my birthday back in April. We were in a restaurant, and talking about this very topic, and to demonstrate, I said, "So that lady talking over there with her friend, the music over the speakers, the boy busing tables behind us, the cook frying things in the kitchen, and you and I talking, are all equally loud in my ears. It's like the volume for all of them is turned way, way up."
I've read some things that say that the extreme stress that cancer treatment causes can make you more sensitive to noise, which I also find interesting. That would describe the onset, but I'm trying to figure out why it's still hanging on.
Whatever the cause, it's obnoxious as heck. I've kept earplugs in my purse for Gage when we're in loud restaurants, etc. (He has a hard time keeping them in. I need to just buy a pair of those noise-canceling headphones for him.) But I find that I've started keeping a pair of earplugs for myself in my purse, as well. And then I added a pair to my catch-all area in the kitchen. Being Mom, I spend a LOT of time in the kitchen. And our living room is right next to the kitchen, great-room style. (Can a room that's, like, 30 feet by 15 feet be called a "great room"?) Ben seems to enjoy watching TV at eardrum-bursting decibel level in the living room. He also seems to enjoy tickling his children, which leads to them screaming either in glee (Gage) or dismay (Sadie). Ben also gets hyper sometimes and loves to sing in a falsetto opera - one of these days, I seriously think he's going to shatter the glass of his big, honking aquarium which sits in our living room. (I wonder if Ben is understimulated in his nice, quiet office all day and needs stimulation when he gets home...) Sometimes the kids will be yelling at each other in the living room. Or I'll have to put the fan on while I'm cooking on the stove top (which is as loud as a passing tornado, in my opinion). And it's all I can do to keep from running from the house, screaming and tearing my hair out. I'm a sensory avoider, as you can tell.
I use earplugs quite often in the car. Because of the whole falsetto operatic singing thing. And because Ben loves him some buttrock. Or the kids will be yelling at each other in the back of the car. (They are particularly adept at yelling at each other.) So I pop my earplugs in and slip off into oblivion.
I mean, I can still communicate with everyone while my plugs are in. I just feel like they put the noises back in the priority they should be - I can hear my kids when they're talking to me, and it drowns out the TV/the kids fighting while they do dishes/microwave fan crap that should stay in the background.
Before it dawned on me to use the earplugs, I had to take little sensory breaks in my bedroom, covers over my head, door locked, hands squeezed over my ears. I'm doing much better now that I've gots my beautiful little squishy, neon orange cylinders.
I also do yoga in my bedroom when things get a little too much. It really helps. My favorite is Yoga with Adriane on youtube. She's fantastic. I do yoga almost more for the mental side than the physical, I swear. I just crave that peaceful, quiet place that it takes me. All is right with the world when you've gotten your sweat on and are at the end of your workout, in savasana.
(How did they find this picture of me? As you can see, I've lost 40 pounds and grown boobs! You didn't know? Weird!)
Psych.
Actually, it's time for me to do some yoga for spinal health, so I will sign off for now.
Namaste.
Sunday, July 17, 2016
It's Been Six Months!
Sooooo...I was visiting Idaho recently, and I had a few peeps ask me why I wasn't blogging lately. I feel badly. I mean, I really do love writing. I just got so stinking busy! Whaaat was I doing, you ask? Oy vey. So much. So. Much.
Which makes sense. We had him tested this spring by a psychologist, just to kind of pinpoint what it is that causes his rage; but I also had the psychologist check to see if there was dyslexia or some type of learning disability - he still really struggles to read, even the easiest of words. So the final verdict: He has dyslexia, discalcula (dyslexia with math), a processing disorder (an inability to process, interpret, and retain what a person learns), and some kind of mood disorder - she thinks he may have the early symptoms of bi-polar disorder, but we'll know more about that when he goes through puberty.
Was it hard to learn these things about Mike? Not really. I already had my suspicions about all of these conditions; as his mommy, I probably know him better than he knows himself. And this Micah, the Micah who struggles, has always been. It's not like he was doing great one day and then suddenly not doing great. He's struggled since the day he was born. I don't know any differently. I think I've mourned more for Gage than with Micah; Gage seemed perfectly normal until 14 or 15 months of age, and then suddenly, my sweet baby was gone, and my autistic son emerged. I still struggle with that. But Micah has always been...enraged. Difficult. His meds take the edge off; he's gotten a little more aggravated this summer, as he's spent more time with his siblings, but he's doing alright for now.
Cancer Stuff: So, I've only recently figured something out - these bouts of horrible, horrible...ah...dysentery (wink, wink) would happen almost two weeks to the day from each Herceptin infusion. Not every time, but maybe every other time. I never really put two and two together before. In fact, I had a really bad bout two weeks after my very last infusion. It was so intense, and my dehydration so swift and violent, that I started having seizures. I was hospitalized overnight, and glad to be. It was really scary. I haven't had any more problems with that ever since February. Thank goodness.
I see my oncologist (Dr. Existential Crisis - seriously, we discuss religion and life and God every time I go in) every six weeks or so. He still insists that we don't need to do any scans on me. I guess this is kind of the new thing - you can get more accuracy by feeling for new lumps or changes. I think that, if I had stage 4, or we hadn't gotten all of the cancer out with the mastectomy, we'd be doing scans. I'm okay with it. They flush my port every six weeks when I go in. My local surgeon (Dr. Pirate) checks my chest every couple of months for any weird-looking changes or anything alarming.
Something new, and obnoxious that happened: In March, when I saw my Portland surgeon, we scheduled my surgery for July 14th. We scheduled my last pre-op for the day before surgery, and we even scheduled my post-op appointment. Ben has a client with an empty apartment in Portland, and he offered to have us stay there after surgery. I was to stay in the hospital for four days or so, but still stay in town in case anything bad happened, for the next seven days, Ben taking care of me. Ben's mom was going to come down and be with the kiddos during that time, Then my mom was going to come out for two weeks, for when we came home from Portland. She had bought the plane tickets and everything.
You can tell something bad was about to happen, right? That's Foreshadowing, baby. So I get a reminder call for my pre-op a couple of days before, we're all ready to go, Ben and I drive over there, we get to the pre-op appointment, and we meet a nurse.
"So, Mrs. S, I see here that you are allergic to Omega 3 Fatty Acids?"
"Um, what?"
"You're allergic to fish oil, right?"
"Uh, no. Not at all. Not in the least."
I should have known something was wrong right then and there.
So we figure out that I'm, in fact, not allergic to fish oil, we update my med list, etc. Then the Physician's Assistant comes in, he makes sure I had pre-op photographs taken (I did back in March), asks me if I have any questions.
I say, "Yeah. Uh, when am I supposed to check in at the hospital tomorrow morning?"
"Um, what?"
"You know. For my surgery. Tomorrow morning. Here."
"I have you down for August 4th."
"WHAAAAAAAAAAAAAAT???"
You get the idea. So, um, somehow, the scheduler back in March had scheduled my pre-op and post op, but apparently, not my surgery. My surgery was given to some other lady. Frown. I burst into tears and cried for a good two hours.
The PA had my surgeon come over from the hospital (an airbridge away) to try to clear things up, but there was nothing she could do. According to her. We asked if she could maybe do my surgery in a couple of days? Nope. Her partner (this surgery requires two surgeons) will be on vacation then, you see. For a good two weeks. Ben and I explained that people had driven for hours to help, that people had bought plane tickets. Nope, nothing doing.
I was devastated. I cried and cried and cried. Looking at it now, it's not THAT big of a deal. I guess it's just....I have been waiting for two years to be made whole, you know? To have my final step pushed back, even by only three weeks, was hard. And I felt really badly about my mom's and mother-in-law's sacrifices and expenses. Sigh.
And then there's the issue of recovery time. I've been told it will take two months; which is why I scheduled it for the summer. The new date - August 4th - will push my recovery into the new school year, which will affect my ability to substitute teach and to teach dance. C'est tres frustree.
Ah well. I have to keep reminding myself that at least I'm alive. And I'm sealed to my family. (If that sounds weird, I'm a Mormon - look up sealing on lds.org! Good stuff!) And my mom, after four hours on the phone, was able to switch her flight without a penalty fee.
As a consolation prize, Ben and I ate at an amazing place in Portland called Tilt:
We went to the temple trip:
(More Mormon stuff! lds.org! Look up temples!)
We slept one night in the fabulous apartment with a beautiful view:
And I got a proper cut and color, by someone besides Great Clips and myself:
I loooove it!
And I get three more weeks of summer fun before becoming, yet again, a Couch Person. The apartment will still be available in August, as well. So it will be alright.
Kay, I've gots to go. Hopefully I'll write soon.
I think I told you guys that I was working on getting my Oregon teacher's license. It took some doing. I've got a provisional license for now - I have to take a couple of tests before next May in order to get the full, four-year deal. Something to add to my checklist. I'll get some downtime for a couple of months coming up here, so I'll have to figure that out, study for it, etc.
I've been applying for jobs, but so far, no bites. It's alright; I've talked to a lot of teachers around here, and it's pretty tough to find a full-time gig. I started substitute teaching in April, working at least a few days per week, and it was crayyyyy. It was such an adjustment to go from stay-at-home mom to working mom. I was so tiiiiiiiiiired all the time. But it really was nice being in the classroom again. I mainly got calls to sub in elementary school, and one school 45 minutes south of the city I live in seemed to like me and call me quite a bit. That was nice - it's hard going to a different school every day, never knowing where you're going or what you're doing. And I'm kind of okay not having a full-time job; I was able to go online and mark the days I couldn't work. My kiddos and I have lots of appointments, so I could have the time off that I needed to take care of all that stuff. So if it turns out that I don't work full-time, I think I'm okay with that. They pay subs really well here, too, which is awesome.
My dance teaching jobs really started heating up this spring; I had to choreograph several numbers, make some costume pieces:
(poodle)
... make some set pieces:
(this was actually a work-in-progress picture of a fallen log set piece - I forgot to take a picture of the final thing!)
..... attend extra rehearsals, and run auditions for next year's placements. I didn't mind this kind of busyness one bit - I LOOOOOVE teaching dance!!! It has been so healing. Such a rush. To watch the girls on stage, performing something that I created?? It's so emotional and incredible.
I can't ever, EVER go back to not dancing. It's as important to me as breathing. And working with kiddos in a teaching capacity? Count me in!
Dancing hasn't made my foot problems any better:
But I think an attempt to jog again really was the final nail in the coffin. I not only worsened my plantar fasciitis, but I developed a nasty case of posterior tibial tendonitis. I've had constant physical therapy, I have to tape it up every time I'm active, I wear orthodics, I do the stretches and strengthening exercises... What has finally provided me some relief is this new therapy that's not covered by insurance, called EPAT. Electrical Pulse Something Therapy. The doctor uses this wand thingey, which taps your foot over and over with an electrical current. It hurts a little bit - not too much. The idea is actually to create inflammation, which is weird. Everything I had done in the past was to reduce inflammation. But to create inflammation stimulates your red blood cells to really go to work trying to heal the area that's been electrically shocked. I've had more relief with this therapy than anything else I've tried! I'm grateful. I still have to baby my foot, though. No more jogging for me. I've started doing a lot of yoga. I need to start swimming laps, or maybe try to get into spinning again.
Micah really wanted to try ballet this year; he really loved it until about January or so. It takes away his precious time with his friends, you see? He fought me every single Monday night about it, but by January, he had already been given a part in a number - Prince Charming for Cinderella. I told him that he had to finish it out, since the other kids were counting on him. My boss actually taught his class and cast him in that role, but then we combined her class and mine, and she asked me to choreograph the number. I created a little pas de deux to do with the little Cinderella. It was so cute. He really struggled to learn his part, even until the very last rehearsals.
Was it hard to learn these things about Mike? Not really. I already had my suspicions about all of these conditions; as his mommy, I probably know him better than he knows himself. And this Micah, the Micah who struggles, has always been. It's not like he was doing great one day and then suddenly not doing great. He's struggled since the day he was born. I don't know any differently. I think I've mourned more for Gage than with Micah; Gage seemed perfectly normal until 14 or 15 months of age, and then suddenly, my sweet baby was gone, and my autistic son emerged. I still struggle with that. But Micah has always been...enraged. Difficult. His meds take the edge off; he's gotten a little more aggravated this summer, as he's spent more time with his siblings, but he's doing alright for now.
Cancer Stuff: So, I've only recently figured something out - these bouts of horrible, horrible...ah...dysentery (wink, wink) would happen almost two weeks to the day from each Herceptin infusion. Not every time, but maybe every other time. I never really put two and two together before. In fact, I had a really bad bout two weeks after my very last infusion. It was so intense, and my dehydration so swift and violent, that I started having seizures. I was hospitalized overnight, and glad to be. It was really scary. I haven't had any more problems with that ever since February. Thank goodness.
I see my oncologist (Dr. Existential Crisis - seriously, we discuss religion and life and God every time I go in) every six weeks or so. He still insists that we don't need to do any scans on me. I guess this is kind of the new thing - you can get more accuracy by feeling for new lumps or changes. I think that, if I had stage 4, or we hadn't gotten all of the cancer out with the mastectomy, we'd be doing scans. I'm okay with it. They flush my port every six weeks when I go in. My local surgeon (Dr. Pirate) checks my chest every couple of months for any weird-looking changes or anything alarming.
Something new, and obnoxious that happened: In March, when I saw my Portland surgeon, we scheduled my surgery for July 14th. We scheduled my last pre-op for the day before surgery, and we even scheduled my post-op appointment. Ben has a client with an empty apartment in Portland, and he offered to have us stay there after surgery. I was to stay in the hospital for four days or so, but still stay in town in case anything bad happened, for the next seven days, Ben taking care of me. Ben's mom was going to come down and be with the kiddos during that time, Then my mom was going to come out for two weeks, for when we came home from Portland. She had bought the plane tickets and everything.
You can tell something bad was about to happen, right? That's Foreshadowing, baby. So I get a reminder call for my pre-op a couple of days before, we're all ready to go, Ben and I drive over there, we get to the pre-op appointment, and we meet a nurse.
"So, Mrs. S, I see here that you are allergic to Omega 3 Fatty Acids?"
"Um, what?"
"You're allergic to fish oil, right?"
"Uh, no. Not at all. Not in the least."
I should have known something was wrong right then and there.
So we figure out that I'm, in fact, not allergic to fish oil, we update my med list, etc. Then the Physician's Assistant comes in, he makes sure I had pre-op photographs taken (I did back in March), asks me if I have any questions.
I say, "Yeah. Uh, when am I supposed to check in at the hospital tomorrow morning?"
"Um, what?"
"You know. For my surgery. Tomorrow morning. Here."
"I have you down for August 4th."
"WHAAAAAAAAAAAAAAT???"
You get the idea. So, um, somehow, the scheduler back in March had scheduled my pre-op and post op, but apparently, not my surgery. My surgery was given to some other lady. Frown. I burst into tears and cried for a good two hours.
The PA had my surgeon come over from the hospital (an airbridge away) to try to clear things up, but there was nothing she could do. According to her. We asked if she could maybe do my surgery in a couple of days? Nope. Her partner (this surgery requires two surgeons) will be on vacation then, you see. For a good two weeks. Ben and I explained that people had driven for hours to help, that people had bought plane tickets. Nope, nothing doing.
I was devastated. I cried and cried and cried. Looking at it now, it's not THAT big of a deal. I guess it's just....I have been waiting for two years to be made whole, you know? To have my final step pushed back, even by only three weeks, was hard. And I felt really badly about my mom's and mother-in-law's sacrifices and expenses. Sigh.
And then there's the issue of recovery time. I've been told it will take two months; which is why I scheduled it for the summer. The new date - August 4th - will push my recovery into the new school year, which will affect my ability to substitute teach and to teach dance. C'est tres frustree.
Ah well. I have to keep reminding myself that at least I'm alive. And I'm sealed to my family. (If that sounds weird, I'm a Mormon - look up sealing on lds.org! Good stuff!) And my mom, after four hours on the phone, was able to switch her flight without a penalty fee.
As a consolation prize, Ben and I ate at an amazing place in Portland called Tilt:
We went to the temple trip:
(More Mormon stuff! lds.org! Look up temples!)
We slept one night in the fabulous apartment with a beautiful view:
And I got a proper cut and color, by someone besides Great Clips and myself:
I loooove it!
And I get three more weeks of summer fun before becoming, yet again, a Couch Person. The apartment will still be available in August, as well. So it will be alright.
Kay, I've gots to go. Hopefully I'll write soon.
Thursday, January 21, 2016
An Anti-Climactic Milestone
Ay carUMBA, why am I blogging when I have dance lesson plans and choreography to work on??? And dishes and laundry to do? And jogging to suffer through? And a dear relative's book-in-progress to read and to provide thoughtful input upon? Why am I blogging, with so much to do?
'Cause I miss writing.
I'm just going to have to schedule writing on my blog like I have to schedule my daily workouts. And my daily scripture study. Which, strangely, is going swimmingly. I've had a lifelong struggle keeping my scripture study consistent. I think I subconsciously made a New Year's Resolution to do so. (I refuse to make real live New Year's Resolutions. Because, invariably, I fail, and then I feel crappy about myself. Just trying to save myself the negative self-talk. I have to be a good caretaker of my psyche, and this is one of the ways I can do that.)
So anyways, guess what?
I am DONE WITH ALL CANCER TREATMENTS FOREVER AND EVER AMEN!!! It really is a huge deal. I remember when I was in the throes of chemo, back in Idaho, more than a year ago. I was sucking on ice chips during one of the medicines in my cocktail - was it taxotere? Adriamycin? Cytoxin? I had to suck on popsicles or ice chips during one, and I had to put my fingertips on ice packs during one... I honestly think I've mentally blocked a lot of that miserable time out of my mind. As well I should. It was THE worst thing I've ever gone through.
Anyways, back to my story. I was sucking ice chips, and a really cute gal with very short but curly hair came in. She sat in the recliner next to me, and we got to talking. She was there for one of her herceptin treatments. She had the same exact cancer as me - HER2+. She had gone through chemo for four months, just like me, and radiation for two months, just like I would, and had a couple of herceptin treatments left. I remember looking at her hair and thinking, "In a year, my hair might be that long!!"
As she got situated in her chair, a nurse and her doc (who was also my doc) came into the infusion room, enormous smiles on their faces.
"Hey, Bonnie [I just picked this name because I can't remember her real name, and I just read an article in the Ensign that quoted a lady named Bonnie], guess what?" Doctor Who Doesn't Really Care if You're Dying of Dysentery-Related Dehydration said. [I picked this name because, well, the name really explains itself. The dysentery-related dehydration hadn't happened yet, because I was only halfway into my treatments. The fun was soon to come. I'm still a little pissed at DWDRCIYDODRD for the not-caring stuff. My oncologist here actually gives a rat's arse about me. Mainly. I'll get to that in a second.]
"What?" responded Bonnie.
"We miscalculated! You don't have to do any more treatments! You're done! You've done a year of herceptin! You're outta here!!" crowed DWDRCIYDODRD.
And sweet Bonnie burst into happy tears.
I yelled, "Get over here and give me a hug!" Because I couldn't go to her, since I was all hooked up to tubes and might have even had my hands on these ice pack thingeys. She obliged. (We had only spoken for a few moments, but we had bonded, as all cancer sufferers and survivors immediately do.) And I might have shed a tear or two for her.
I remember thinking, "Man, when I'm done with my last herceptin infusion, I am going to be so emotional!!! I'll cry and cry and cry!!"
So, yesterday, when almost the exact same scenario happened to me (I found out after my treatment yesterday), all these months later, I was surprised that not a tear was shed. (By me. My cute chemo nurse cried.). I blame it on my anti-depressants. Those things are strong. I still feel extreme joy and extreme sadness, but you won't see one tear dripping from this eye. That's just how it is.
I often think (because I think really weird thoughts), Man, if I was an actress, I'd have to go off anti-depressants. Because you gotta be able to cry when you're an actress. Nobody would hire me. Haha! Like I could ever be an actress! Even when I wasn't on anti-depressants, in high school drama, I had a hard time conjuring up any kind of tears. Of course, the only serious play we did was written by my drama teacher, and boy, was it crappy. It was called Castle Dracula. The dialogue, plot....heck, everything, was really ridiculous. A sample of a line I had to scream: "Stop killing my FRIENDS!!!" With such crappy material, I had no choice but to use the old vicks-vapo-rub-on-the-fingertips trick. Oh, you don't know that trick? Weird! Kay. So, you dip your pointer finger and your thumb in Vicks before you go on stage for the scene in which you'll have to cry. And then, when it's time to cry, first, you put your finger and thumb into where your tear ducts are, like you're pinching the bridge of your nose in frustration and angst. Or, you cover your eyes while your mouth starts fake trembling, and really, you're smearing Vicks all up in your eyes. And then you can cry like a baybay.
Tricks of the trade, dude.
Anyways, so yesterday, when I found out I was totally done with cancer treatment, I was just mainly...joyful. Smiley. Giving hugs to all my chemo nurses. Joking around. Partially because I can't cry, but also because herceptin was a cakewalk. I had zero side effects from it. I've felt fantastic, really, since fall or so. I had my ups and downs last spring and summer, but I think that was just my body trying to climb out of this hole that chemo and radiation had thrown me into. But since September or so, I'm gooood.
I think that, if the end of chemo had been the end of my cancer-treatment journey, I would have been very emotional. Because it was so horrendous. Also, my journey isn't quite over just yet. I have to tackle the enormous Reconstructive Surgery Beast this summer. Maybe when I'm done with that, I'll cry those tears of joy.
So, yesterday, though I didn't give an Oscar-worthy crying performance, I still wanted to celebrate. Because it really IS a big deal! No more cancer treatments, ever! You know, unless it comes back. But I don't like to think that way. And you know me - I like to partay. So I put up a general announcement up on facebook yesterday - "Yay! I'm done!! Someone should throw me a party!" I didn't mean that someone should actually throw me a party.
But wouldn't you know it? My good friend Sara saw that post and threw me a fantastic, impromptu dinner party at her house. We had barbecue chicken sandwiches, intoxicatingly yummy strawberries, and adorable pink mini-cupcakes. She also got me some pink tulips and a balloon.
Such a cool surprise! Thanks a million billion, Sara!!
Oh, and we can't forget the small celebration my kids and I had after school yesterday. My nurses had given me a bottle of Martinelli's sparkling apple cider (and a little certificate), so I left it on the table so that the kids and I could celebrate together.
When they got home, Sadie yelled, "Mom!! What are you doing with WINE in our house?!?" I can't figure out why on earth she would automatically think that I had decided to start drinking, despite her ten years of experience with her teetotaler parents. What in our experience together makes you think I would start drinking now? And put a bottle of wine on the table to trumpet my announcement to all the world??
After I assured the ninos that I had, in fact, NOT decided to start drinking, and that this was just fancy apple cider, the kids were eager to try it. "Look, Mom! I'm drinking WINE!" said Sadie, holding the bottle up to her mouth. I chuckled, then popped the lid off and poured each kid a glass. Gage drank his quickly, then said, "Mommy, I want some more bee-yah!" [Gage's pronunciation of "beer," apparently.] Haha! It was funny.
He even wanted to clink cups with Sadie and say, "Cheers!"
I don't know where he gets this stuff, I swear!
Anyways, reaching this milestone really made me want to throw caution to the wind and get my reconstructive surgery done ASAP. I mean, physically, I can do it the second I want to, now. But after talking to my mom about it, I've realized that this DIEP Flap thing is going to be a huge, hairy beastmaster of a surgery. I will be down for the count for a solid two months. I can't do it right now. I have dances to choreograph and dancers to teach. I'll just have to be patient for five more months. Sigh. And THEN I can feel like I'm done and can move on with my life.
I'm planning on getting my port out when they do my surgery, so until June or so, they have to flush my port every six weeks to prevent blood clots. Yikes. Bikes.
When's my first scan, you ask? Oh, um, NEVER. Which is where the my-new-oncologist-may-not-give-a-rat's-about-me-either comment from above comes in.
Sooo, um, I guess most oncology practices don't do scans anymore, unless there's a reason to do a scan. They assume that all the crap you just put your body through for a year and a half did its job. If you get new pain, or a new lump, or weird blood lab results, then they do a scan. Until then, you just...hope that this nasty thing that was killing you is...gone?? I don't know. My doc, GLIHYDGIA [Good luck! I hope you don't get it again!], said that studies have shown that getting scans every three months is equally as effective as paying attention to new pain, new lumps, weird lab results. So why do it? is what they're saying. I gave him a good answer to that question: Um, so that a gal can get peace of mind. So that she has scientific proof that the cancer is gone. He said, "We KNOW your cancer is gone. Your scan after your mastectomy showed that!" Then I said, "Um, then why did I just go through all this HELL??"
As you can see, we had a very frank conversation, and basically, he gently and kindly said that his practice doesn't do that. That he's had a few women go to a different doc so that they can get that peace-giving scan can be performed. I know how my parents feel about it - they want scans. I don't know. I mean, I'm not the oncologist, you know? I trust that he knows his stuff. He has been a fantastic doctor. He gives his patients his cell number so that, if, for instance, you think you might be dying of dysentery, he can help you. I really do trust him. But.... I don't know. So for now, I'm going to maybe do some research and see what I can find out about this new way of thinking about post-cancer care. I don't know. What do you guys think?
Kay, I have to take off and make a lesson plan for tonight's beginning ballet class. Ciao!
'Cause I miss writing.
I'm just going to have to schedule writing on my blog like I have to schedule my daily workouts. And my daily scripture study. Which, strangely, is going swimmingly. I've had a lifelong struggle keeping my scripture study consistent. I think I subconsciously made a New Year's Resolution to do so. (I refuse to make real live New Year's Resolutions. Because, invariably, I fail, and then I feel crappy about myself. Just trying to save myself the negative self-talk. I have to be a good caretaker of my psyche, and this is one of the ways I can do that.)
So anyways, guess what?
I am DONE WITH ALL CANCER TREATMENTS FOREVER AND EVER AMEN!!! It really is a huge deal. I remember when I was in the throes of chemo, back in Idaho, more than a year ago. I was sucking on ice chips during one of the medicines in my cocktail - was it taxotere? Adriamycin? Cytoxin? I had to suck on popsicles or ice chips during one, and I had to put my fingertips on ice packs during one... I honestly think I've mentally blocked a lot of that miserable time out of my mind. As well I should. It was THE worst thing I've ever gone through.
Anyways, back to my story. I was sucking ice chips, and a really cute gal with very short but curly hair came in. She sat in the recliner next to me, and we got to talking. She was there for one of her herceptin treatments. She had the same exact cancer as me - HER2+. She had gone through chemo for four months, just like me, and radiation for two months, just like I would, and had a couple of herceptin treatments left. I remember looking at her hair and thinking, "In a year, my hair might be that long!!"
As she got situated in her chair, a nurse and her doc (who was also my doc) came into the infusion room, enormous smiles on their faces.
"Hey, Bonnie [I just picked this name because I can't remember her real name, and I just read an article in the Ensign that quoted a lady named Bonnie], guess what?" Doctor Who Doesn't Really Care if You're Dying of Dysentery-Related Dehydration said. [I picked this name because, well, the name really explains itself. The dysentery-related dehydration hadn't happened yet, because I was only halfway into my treatments. The fun was soon to come. I'm still a little pissed at DWDRCIYDODRD for the not-caring stuff. My oncologist here actually gives a rat's arse about me. Mainly. I'll get to that in a second.]
"What?" responded Bonnie.
"We miscalculated! You don't have to do any more treatments! You're done! You've done a year of herceptin! You're outta here!!" crowed DWDRCIYDODRD.
And sweet Bonnie burst into happy tears.
I yelled, "Get over here and give me a hug!" Because I couldn't go to her, since I was all hooked up to tubes and might have even had my hands on these ice pack thingeys. She obliged. (We had only spoken for a few moments, but we had bonded, as all cancer sufferers and survivors immediately do.) And I might have shed a tear or two for her.
I remember thinking, "Man, when I'm done with my last herceptin infusion, I am going to be so emotional!!! I'll cry and cry and cry!!"
So, yesterday, when almost the exact same scenario happened to me (I found out after my treatment yesterday), all these months later, I was surprised that not a tear was shed. (By me. My cute chemo nurse cried.). I blame it on my anti-depressants. Those things are strong. I still feel extreme joy and extreme sadness, but you won't see one tear dripping from this eye. That's just how it is.
I often think (because I think really weird thoughts), Man, if I was an actress, I'd have to go off anti-depressants. Because you gotta be able to cry when you're an actress. Nobody would hire me. Haha! Like I could ever be an actress! Even when I wasn't on anti-depressants, in high school drama, I had a hard time conjuring up any kind of tears. Of course, the only serious play we did was written by my drama teacher, and boy, was it crappy. It was called Castle Dracula. The dialogue, plot....heck, everything, was really ridiculous. A sample of a line I had to scream: "Stop killing my FRIENDS!!!" With such crappy material, I had no choice but to use the old vicks-vapo-rub-on-the-fingertips trick. Oh, you don't know that trick? Weird! Kay. So, you dip your pointer finger and your thumb in Vicks before you go on stage for the scene in which you'll have to cry. And then, when it's time to cry, first, you put your finger and thumb into where your tear ducts are, like you're pinching the bridge of your nose in frustration and angst. Or, you cover your eyes while your mouth starts fake trembling, and really, you're smearing Vicks all up in your eyes. And then you can cry like a baybay.
Tricks of the trade, dude.
Anyways, so yesterday, when I found out I was totally done with cancer treatment, I was just mainly...joyful. Smiley. Giving hugs to all my chemo nurses. Joking around. Partially because I can't cry, but also because herceptin was a cakewalk. I had zero side effects from it. I've felt fantastic, really, since fall or so. I had my ups and downs last spring and summer, but I think that was just my body trying to climb out of this hole that chemo and radiation had thrown me into. But since September or so, I'm gooood.
I think that, if the end of chemo had been the end of my cancer-treatment journey, I would have been very emotional. Because it was so horrendous. Also, my journey isn't quite over just yet. I have to tackle the enormous Reconstructive Surgery Beast this summer. Maybe when I'm done with that, I'll cry those tears of joy.
So, yesterday, though I didn't give an Oscar-worthy crying performance, I still wanted to celebrate. Because it really IS a big deal! No more cancer treatments, ever! You know, unless it comes back. But I don't like to think that way. And you know me - I like to partay. So I put up a general announcement up on facebook yesterday - "Yay! I'm done!! Someone should throw me a party!" I didn't mean that someone should actually throw me a party.
But wouldn't you know it? My good friend Sara saw that post and threw me a fantastic, impromptu dinner party at her house. We had barbecue chicken sandwiches, intoxicatingly yummy strawberries, and adorable pink mini-cupcakes. She also got me some pink tulips and a balloon.
Such a cool surprise! Thanks a million billion, Sara!!
Oh, and we can't forget the small celebration my kids and I had after school yesterday. My nurses had given me a bottle of Martinelli's sparkling apple cider (and a little certificate), so I left it on the table so that the kids and I could celebrate together.
When they got home, Sadie yelled, "Mom!! What are you doing with WINE in our house?!?" I can't figure out why on earth she would automatically think that I had decided to start drinking, despite her ten years of experience with her teetotaler parents. What in our experience together makes you think I would start drinking now? And put a bottle of wine on the table to trumpet my announcement to all the world??
After I assured the ninos that I had, in fact, NOT decided to start drinking, and that this was just fancy apple cider, the kids were eager to try it. "Look, Mom! I'm drinking WINE!" said Sadie, holding the bottle up to her mouth. I chuckled, then popped the lid off and poured each kid a glass. Gage drank his quickly, then said, "Mommy, I want some more bee-yah!" [Gage's pronunciation of "beer," apparently.] Haha! It was funny.
He even wanted to clink cups with Sadie and say, "Cheers!"
I don't know where he gets this stuff, I swear!
Anyways, reaching this milestone really made me want to throw caution to the wind and get my reconstructive surgery done ASAP. I mean, physically, I can do it the second I want to, now. But after talking to my mom about it, I've realized that this DIEP Flap thing is going to be a huge, hairy beastmaster of a surgery. I will be down for the count for a solid two months. I can't do it right now. I have dances to choreograph and dancers to teach. I'll just have to be patient for five more months. Sigh. And THEN I can feel like I'm done and can move on with my life.
I'm planning on getting my port out when they do my surgery, so until June or so, they have to flush my port every six weeks to prevent blood clots. Yikes. Bikes.
When's my first scan, you ask? Oh, um, NEVER. Which is where the my-new-oncologist-may-not-give-a-rat's-about-me-either comment from above comes in.
Sooo, um, I guess most oncology practices don't do scans anymore, unless there's a reason to do a scan. They assume that all the crap you just put your body through for a year and a half did its job. If you get new pain, or a new lump, or weird blood lab results, then they do a scan. Until then, you just...hope that this nasty thing that was killing you is...gone?? I don't know. My doc, GLIHYDGIA [Good luck! I hope you don't get it again!], said that studies have shown that getting scans every three months is equally as effective as paying attention to new pain, new lumps, weird lab results. So why do it? is what they're saying. I gave him a good answer to that question: Um, so that a gal can get peace of mind. So that she has scientific proof that the cancer is gone. He said, "We KNOW your cancer is gone. Your scan after your mastectomy showed that!" Then I said, "Um, then why did I just go through all this HELL??"
As you can see, we had a very frank conversation, and basically, he gently and kindly said that his practice doesn't do that. That he's had a few women go to a different doc so that they can get that peace-giving scan can be performed. I know how my parents feel about it - they want scans. I don't know. I mean, I'm not the oncologist, you know? I trust that he knows his stuff. He has been a fantastic doctor. He gives his patients his cell number so that, if, for instance, you think you might be dying of dysentery, he can help you. I really do trust him. But.... I don't know. So for now, I'm going to maybe do some research and see what I can find out about this new way of thinking about post-cancer care. I don't know. What do you guys think?
Kay, I have to take off and make a lesson plan for tonight's beginning ballet class. Ciao!