Saturday, December 23, 2017
You know, like I'm some kinda goddamn super hero or something.
Thanks Caitlin for texting me at 8 am and asking for a lift.
From Port Angeles to Sequim.
This is the type of thing that's going on in my life that helps me.
I know I'm the logical choice because my family lives between PA and Sequim.
And I know she ain't gonna ask unless she's in need. This woman knows me and the daily struggles my family faces.
I'm not saying you get text me at 8 am and ask me to pick your ass up in Port Angeles and get a ride to Sequim.
Especially when there's snow on the ground.
And you gotta cross 27 bridges to get to where your going. And you've slipped on one of those 27 bridges on black ice and totaled your 4Runner.
Actually, Randy did that. I was the passenger. We were the only vehicle. But he broke the shit outta my first 4Runner. Then he bought me a newer one. Because he's a good egg like that.
Luckily, we didn't go over the McDonald Creek bridge on 101. We are living proof that those cement barricades are really, really fuckin' solid. And, no, it wasn't recent--it was many years ago; pre-children. That's how life is defined now...pre-children : since children; pre-cancer : since cancer.
But, yes, I'll pick up my dear friend and fellow breast cancer survivor who I've known since well before either of us was diagnosed because she needs a ride. Because you know when one of your closest people calls on you early in the morning you know something's going on and she needs help and that she's not fiddle-fartin' around.
Wheels turn because you need to go to Safeway because ultimately, you're Mrs. Claus and need to make sure there's some goddamned milk for Santa. Jesus.
And since you're going to Sequim, you may as well go to Costco because COSTCO.
On the Friday before Christmas.
No part of this was thought out.
But, my dear friend was willing to go to both stores, in two different towns. Twist her arm. Heh.
And then we ended up going to the Safeway in Sequim because I picked her brain and figured out what the hell to eat on Christmas Day because Jesus, this pressure is similar to Thanksgiving and fuck that! I was not into Halloween and at Thanksgiving I had an epiphany...so why not do it in three? The Big Three. Right? Even though we've been eaten the latkes, mmm-hmmm....
Make change. Less pressure. Less stress.
Yes, child, Santa will still come. Mrs. Claus is on top of planning the route with the GPS. No, not the elves. They're total minions. Mrs. Claus is in charge. It's cool, she'll see to it that he gets here. Trust me when I tell you Santa gets all the credit. Yes, Mrs. Claus is a Bad Ass.
Less stress. Less pressure. Make change.
In fairness, we have a tree, it's just mounted on the wall. Thanks Pinintrest then YouTube.
Because we live in a small house. It's beautiful and I love it and I'm thankful for it. But I'm tired of displacing our beloved 4-legged child so the tree can be where she sleeps because she's 10 and she deserves better. And the allergies I have from the tree? Done.
But really: stop wrestling and leave the tree alone and we can't even put presents under it because there's no room and Nathan would struggle to keep his hands off of the presents and we need to set him up for success as much as possible but it's a pain in the ass and a lot of work and all the presents are in our bedroom closet and this is super stressful so why in the goddamn are we doing this?
Because at the end of the day, what matters is that we are alive and have each other.
Yes, child, it's hard to feel festive and merry when our friends are hurting and in deep pain like nothing we've ever known. His cancer was different and much more aggressive. Good question; it means "mean." Yes, meaner than mine. Way meaner than Daddy's. Yup. It was just as mean as Pop-pop's.
Well, we can help by being good friends and loving them and offering help. What helped us as a family when we were dealing with our own traumas? Hugs. Yes. And love. Yup. And sure, pray, or think or meditate or light battery operated or full flame candles or whatever it is that you do to bring comfort to yourself as long as it doesn't infringe upon whatever it is that she decides she and her children need. Because she is in charge.
It could be that what helped us helps them. It could be that they need something completely different. I do not have the answers; only she does, and she'll let us know when she's ready.
She's a mom and she's got it but she's blazing a trail nobody wants to blaze and she's got no map, no guide. And even though she's got a bunch of other moms trying to take care of her, and we all want to help but some of us feel frozen because we were so close with them but cancers changed all of it for both of our families and the unspoken could've been that my beautiful friend who needed a lift and who is a survivor and I know all too...takes my breath away....
When I'm sorry isn't adequate.
And neither is Fuck.
Fuck you, you fucking disease. For taking him. From her. From them.
I don't know because I am not in charge, little dude. I know. That's a tough one for me to swallow too, dude. But whenever I am notified of the plan, we'll spring into action. I know you guys are worried about your friends and that you love them, my sweet boys. I hope we can see them soon, too. Yes, I will get in touch with her.
I know honey. I love them a lot too. And I'm sad too. I wish his outcomes were different. I wish the outcomes for their family were different. When Pop-pop died, Grandma said she felt a little relieved because Pop-pop wasn't hurting anymore. I imagine, perhaps they do. But there are some things that are not in anyone's control. Let's be thankful they're not in physical pain anymore. And we can do our best to help them learn to live differently. Very, very differently.
You has a voice and teach others to speak. I do not speak for you; nobody else should either. You are capable. You are strong. You have courage like nobody I've known. I am thankful for you and our friendship.
All my love always.
Friday, December 1, 2017
I know your struggle is yours.
I know all parents watch their kids struggle.
But your struggle is different.
This morning, after you spent an unusually long time in the bathroom, after a breakfast that was mostly not eaten, after you swallowed the horse-sized bright red gel caps and the rice-sized dab of medical marijuana oil that I give you to reduce your seizures, I watched you struggle to get your socks and shoes on.
I watched as you yelled at and fought with your socks. I watched you start to put your left shoe on the right foot. I corrected you, because you guys were going to be late to school, which would ultimately create more anxiety for all of us.
A split second decision to advise you. To help you. To watch you stop struggling, if even for a moment. Was it the right thing to do? Yes, because you changed the shoe to the other foot. And you didn't freak out about it. That's the catch, isn't it? Whether you'll freak out and start yelling at me and then I start yelling back because I really can't stand being consistently yelled at by you every fucking morning for nearly two weeks. The bully isn't bullying you anymore. Mrs. O is on top of that shit like white on rice. But you kept on about it for damn near a week after she said it was over. I know. I know you're slower to process. But fuck, dude. Stop already. Move. On. It's. Over. Please.
Thanks for letting me help you tighten up the velcro on your shoes and for letting me take your pant leg out of your sock. It's important to me that you look "normal" when you go to school. I mean, you look like any other fifth grader. Any other 11-year-old, who is 125 pounds and 59 inches tall. I've only got 7 pounds and 3 inches on you.
This morning, as I watched you struggle into your fleece and struggle to zip it up, with your well-worn dark green Bite Saber hanging from your neck, I started to silently cry because what will happen to you? Who will look after you? It does not fall to your brother. But it probably will eventually. When you're both grown.
Stop crying. First get them out the door, then sit down and cry. Don't let him see you cry. His anxiety will go sky high. And don't say "sky high" because he thinks it's funny and will start giggling and won't stop and he'll pee his pants. Shit. Is he wearing a pull-up?
I watched you carefully walk, in the pouring rain, down the 10 steps from our deck to the driveway. I watched you, in the darkness of the early morning, as you loaded up in the truck, thankful you have the ability to fasten your own seat belt. The rain was so heavy your brother didn't roll down his window and wave for several minutes like he normally does. I watched from our enormous picture window and waved, like I do every morning, as Daddy drove away. My heart was heavy, as the red taillights disappeared down the driveway and the darkness of the grey day set in, the sound of the rain pounding on the skylights in the kitchen.
Then the tears came. The sobbing. The snot. The blubbering. The sadness. The regret. The guilt. The anger. The fear. The trepidation that one big seizure could eliminate all the progress you made. That too many little seizures are equally terrifying to watch. The constant nagging in the back of my head, and hoping that the "what if..?" never comes to fruition.
Invisible illness. Invisible brain disorders. Invisible struggles.
It's ok, Mom and Dad. I get why you stay away. I get why you don't acknowledge Mom's brain disorder. It's intense. It's easier to ignore shit and hope it just goes away. But it won't. Living with and caring for a person who has a brain disorder is a struggle for everyone on a person's family.
My son struggles with basic things: eating with a fork, writing his name, get his shoes on the correct feet and zipping his fleece up. His main struggle: he'll always be five years old. Developmentally, my son, no matter how old he gets and no matter how long he lives; no matter how big he gets, will always have the brain of a five-year-old child. He may get to six; but I'm not holding my breath. He may end up regressing, which happens sometimes with autistic people. But, it can also happen because some fucking electrical storm in his brain makes it so, and ultimately, a seizure is more likely to happen and cause who knows what. I don't go there. ScareTheHellOuttaMe.com is not a place I choose to go.
Think about that. What would you do if your child was going to be five forever? I recently had a conversation with a community member who was lamenting the fact that she and her husband were going to be empty-nesters soon. I kept my mouth shut, because I really had nothing to contribute to the conversation. We will likely never be empty-nesters. Because you can't let a five-year-old child live alone. Or I can't, anyway. This isn't about me seeking support for him. I know about the resources. The ones that our current president and his fucking cronies are attempting to eliminate. I do not count on those resources to be there.
But it's a struggle. Everyfuckingday is a struggle. And it really hurts my heart.
If I could start again
A million miles away
I would keep myself
I would find a way
Sunday, November 26, 2017
My family has been participating in an annual event out of obligation, expectation, and tradition.
But, being The Parents, we get to decided what type of family traditions we get to do in our own home. Right? I mean, seriously. Just because our parents did things a particular way doesn't mean we are in any way shape or form obligated to do it that way too.
And this weekend, I decided this was the last traditional Thanksgiving dinner I will cook.
It's not the holiday itself. Believe me when I tell you I am thankful for a LOT. Like being able to afford the anti-seizure medications my older son is on. Like surviving breast cancer. Like having a husband that survived tonsil cancer. Like our amazing community who has supported us through all of my family's major health issues. We are incredibly thankful for the roof over our heads and reliable vehicles. Heat. That's kinda important. Food. Running water. Both are vital. So, it's not that I'm not or we're not finding ways to express gratitude or teach our children to be thankful. Gratitude. Check.
What gets me is the amount of planning and time and energy and money and logistics that goes into making a meal for only four people and knowing that not everyone is even going to taste everything because everyone has food anxiety and texture issues and ultimately I need to take care of me and my stress and making a huge meal is really really REALLY stressful.
So I'm done.
|Mac and Cheese Maker|
And because autism runs rampant in our home, and because each of us has food issues, I've learned over the years how to accommodate who has what food issue. Because that's just what you do, right?
But I've also learned that I'm done making certain accommodations around food for each of the individuals in my home. I'm not a short order cook. I was. But no longer. Will I still puree the onions? Totally. But, you can pick out the
Part of this is where each of my kids are developmentally. For the past several months, we've been implementing the "cook your own lunch" method on the weekend. And so the boys have stepped up. My older son, who is developmentally disabled, is now able to cook his own Annie's Mac and Cheese on the stove, including draining the pasta into the colander that is in the sink (and my heart is in my throat every.single.time.). And my younger son, who is so developmentally advanced that he intentionally failed the testing for the highly capable program, chooses to make a homemade quesadilla on the griddle. In his defense, he grates his own cheddar cheese.
|Mashed Potato King|
Rule number one: One boy in the kitchen at a time.
Rule number two: You may not light the stove or turn on the oven.
Rule number three: Stay safe: use the timer (prevent a fire) and use oven mitts or hot pads (prevent a burn).
Rule number four: Either Mom or Dad supports and helps. And if Mom or Dad need to move in fast, you move outta the way faster.
I think when we start to have contempt for something, it means we're done with it. For years, I've been feeling contempt towards cooking on Thanksgiving, but didn't even realize it until my younger son said at the beginning of the month: "I don't like Thanksgiving because we always fight."
Thanks kid. Knife to the heart. At least he spoke his truth.
Well, the holidays are stressful. But why? Because I have always made the decisions about what we're going to eat on Thanksgiving. And I'm tired of that. What am I teaching them about food if I don't involve them in the decisions about what to eat? What am I teaching them about food if I do all the cooking? What am I teaching them about gender issues if I do all the shopping, planning, prepping and cooking? Because I'm not their bitch. I'm their mother. And I'm a Health Educator. What's the healthiest thing to teach them? If I get them to buy in to this meal from the beginning, will they have a different level of appreciation?
|Randy's Granny's cornbread dressing recipe|
So we cooked and we ate lunch about 1 and then we ate leftovers for dinner at 5:30. And then my family was done with Thanksgiving. So, like many Americans who are stuck with a shit ton of leftovers, I'm trying to be creative and clever and hitting trusted sites for leftover recipes...and it's going ok. But really, my family would be happier if I just roasted a chicken and made mashed potatoes for Thanksgiving dinner, and then we had the same thing on Friday night. And then we moved on to an entirely new dinner on Saturday and Sunday.
For the record, this is the best recipe we found for leftovers: Thanksgiving Leftover Hand Pies is the official title at Campbell's. However, in my home, these are called "Thing-a-ma-jigs" which was nominated by the 8-year-old, and voted on with three yeas and one nay.
And of course, I had to modify the recipe, because everyone's got a texture issue and some people despise cranberry sauce.
But, whatever. I'm done with cooking that big of a meal and dealing with insane amounts of leftovers that create even more stress that force me to "create" better tasting bullshit that they just ate yesterday. The max I can get out of one night of cooking is two meals. Two dinners. Unless it's tacos. Duh.
Ultimately, I have to make healthy choices for myself and how to best spend my time. By choosing to not make a traditional Thanksgiving meal out of some imaginary obligation I have to my family is a healthier choice for me.
This Thanksgiving has provided me a time of reflection and an opportunity to decide what my priority is: be happy.
Friday, November 3, 2017
Tuesday, October 31, 2017
I'm not into decorating.
I'm not into carving pumpkins.
I purchased two pumpkins, but I'm not into carving them. The boys can do it if they want to. They don't want to. I'm not into it. I suppose they'll end up being thrown into a part of the woods on our property. Perhaps in a few seasons, we'll have a Great Pumpkin patch.
I'm not into getting their costumes ready. Even though I purchased stuff for their costumes, I'm not really into it. Nathan's going as a cat. Again. And Isaac hasn't completely decided but is leaning towards a vampire. We'll see.
I feel like I should be happy. That I should be thankful. That I should be decorating to make the boys happy and help them feel like "normal" kids. Even though the only "normal" in our house is a setting on the washing machine.
It's been a full month since I had my chemo port removed. Ample time to recover from that minor surgery. But the emotion. The angst. The frustration. The worry. The fear. The guilt. The sadness. I'm still processing all of that. And the incision, while mostly healed, is still pretty tender.
And last week sucked. Perhaps the worst week I've personally had in a long, long time.
It started out great: I did some grading from home on Monday morning, like I usually do after my husband and the boys are out the door for school and work. I then went to a noon power yoga class at Poser Yoga Studio. (Thanks Jenny for the great class!)
On Tuesday I was able to help out last minute by volunteering at the book fair at the boys' school. I'm thankful that I had the opportunity to help kids and be around books. Because: BOOKS! Right?! Oh, and that warm feeling you get in your heart from volunteering and helping others.
Wednesday is my regular volunteer day at school, I usually go in and collate the folders that get sent home to parents. It's a great thing for me to do because I don't have to think about the myriad and intense health issues my family has been dealing for the past five years. But this past Wednesday, I unexpectedly started my period. While at school. But it was one of those, it is? Is it not? Seriously? You've got to be fucking kidding me type of things that all women experience, at least every once in a while. Well, I suppose that explains my emotional state the past couple of weeks. Fuck. And I had no tampons. Because I didn't expect it.
The reason I didn't expect my period is because when I went through chemotherapy for breast cancer in 2015, the chemo caused me to go into what's called "medical menopause." This happens in most young women (I was 42 at the time--still "young" in cancer land). Chemotherapy is successful in killing cancer cells because cancer cells are considered "rapidly-dividing cells." We all have cells that are considered "rapidly-dividing" our skin cells, our hair, our finger and toe nails....
And that's why our hair falls out when we're going through chemo...because to chemotherapy, fast-growing cells are fast-growing cells: the chemotherapy doesn't discriminate and can't tell the difference between a cancer cell and a hair cell.
So, medical menopause hits me, which is a total fucking bonus because god knows when you're going through chemo you really REALLY don't want to be dealing with your goddamn period. You know what I'm sayin? Seriously. Praise be for medical menopause, you guys.
Anyway, so it turns out my ovaries didn't completely shut the fuck down because apparently I'm one fertile bitch. Seriously? Because in what goddamn universe is it a good idea for me to have another baby? Not the one I'm living in. Fuck that. Kids suck the life out of their mothers.
The first time I got my period after chemo was a total surprise. Like, I had no idea, it wasn't even on my radar because I'm in Tucson on vacation with Stacie, staying at Ventana Canyon, sleeping on the 12,000,000 thread count white cotton sheets. I'm just thankful that when I sat up, shit didn't go down like the elevator scene in The Shining. You with me?
Since then, I've gotten my period about every six months. But really, I don't pay attention. Can't that shit stop already? I kinda like not having a period and no hot flashes and sex with my husband whenever I need/want to. Goddamnit. There goes my body betraying me again.
On Thursday, after what I'll politely call the Before School Psycho Menstruating Mommy Meltdown, I had a heated text exchange with my incredibly patient husband, in which I informed him of all the errands I needed to run that day. Then in an attempt to reset and be kind to myself, I took a long hot shower. And in it, the last gigantic glue-scabs from my chemo port removal last month came off. Thank the sweet Baby Jesus for that. But goddamnit it was nasty. Seriously. It was as big as my pinky nail and made me gag a little. It looked like the biggest booger you've ever seen. So gross.
On Friday I made the 75-minute drive to Silverdale because I needed to get off the Peninsula. I had lunch with an old friend who has been a nurse for decades and doesn't sugar-coat shit. When she sat down across from me at the table, she said something about how I looked like hell. Because I did. No sleep for 3-4 consecutive nights. Thanks period.
Saturday was soccer, and it's always a treat to see Isaac play. But it's super stressful, too, because watching Nathan while in a large open space, with lots of people and a few dogs can be tricky. Fortunately, one of Isaac's teammates...his mom, who is lovely, brings their large and very sweet dog, so Nathan was covered, and I felt like I could breathe a little. Thank you, Katie.
On Saturday afternoon, I said no to a spontaneous dinner with a good friend who's birthday was yesterday. I was too tired. I listened to my own needs. I went to bed early. I know she understands, but I still have guilt about not going. The fear of missing out.
Sunday was a stay home family day. This is part of our routine. We play Wii. We have dinner as a family. And we talked about the fact that there are no Halloween decorations at our house this year. And I know the boys are disappointed. And I know it doesn't feel like Halloween. And I'm sorry. But I'm tired of being the only one who decorates. I mean, the boys help, but there's a lot of pushing rope, you know what I'm saying?
And this week, the schedule with school is crazy. All day Monday, complete with a field trip for Nathan. No school Tuesday. Because Halloween is like a holiday up here. But when I was in school, we'd get time off for the Tucson Rodeo, so it's all good. But still. Then Wednesday and Thursday we have 1/2 days...and all three days, there are parent-teacher conferences...which I'm also not into. I mean, we had Nathan's IEP meeting a couple of weeks ago. It was a short one, as far as IEP meetings go. Any time you walk out of an IEP meeting that's less than two hours, it's good. Right? On Wednesday, we'll meet with Isaac's teacher, and it's only 20 minutes, and I know he's doing well academically.... But still. Not into it. Friday is a full day. But in an autism home, the change of schedule and the holiday tend to throw us all off.
And this week, these memories have been popping up in my Facebook feed. It's been five years since we took our older son over to Seattle Children's Hospital and checked our then 6-year-old into the Inpatient Psychiatric Unit for 11 days because he had become incredibly violent. Looking back, I know it wasn't his fault that he was so aggressive; it was the anti-seizure drug he was on. Depakote. That shit is the devil. I'm thankful that we've made the changes to his meds that we have. But, fuck me, keeping on top of his meds and the changes and trying new drugs, both the ones that are mass produced in a lab and the ones that are grown in the ground, is a lot of work. I used to chart everything...but I let it go a long time ago.
So today, I'll get my shenanigans together and I'll help the boys with their costumes and I'll throw something on and I'll pick Randy up at the college and then we'll go downtown to trick-or-treat. Because that's what we do.
Whether we're into it or not.
For our kids.
Sunday, October 22, 2017
I can always feel it if I rub my hand over it.
|My chemo port|
I feel it every single time I do my lymphatic massage, which I do twice each day.
Sometimes I can see it when I look down and to the left, my eyes sweeping over it, and I have a rush of varying emotions run over me.
Oh, THAT goddamned thing.
It's a constant reminder.
I can see it when I look in the mirror.
It's kinda cool.
I hate it.
It's on my left side, about three finger-widths below my clavicle. My collarbone. I didn't do so well in Anatomy and Physiology because that was the first summer Randy and I were dating. Mmm-hmmm...A&P.....
But, clavicle, I got that!
So I've got this piece of plasticy-rubbery-hard-bumpy thing under my skin. It's horrible and wondrous. It's invasive and life-saving.
In Cancer Land, it's called a "chemo port" or a "port-a-cath." My particular model is the Bard Power Port. It even comes with a snazzy rubber bracelet that I wore, (it broke; not made for long-term usage, apparently) just in case of emergency, so that the first responders know they can tap my chest to administer IV fluids or draw blood, instead of trying to find a vein in the heat of the moment type of thing. I also have a small plastic card for my key chain. And another plastic card, the size of a credit card, that stays in my wallet. I added my name in permanent marker. Because if some shit goes down, it's pretty fuckin important that health care professionals know there's some foreign shit embedded in my body and it's supposed to be there.
As great as my surgeon was in her removal of the lime-sized lump in my right breast....
When I saw my surgeon back in March, for my 2-year post-op check-up, she apologized to me, again, for it's placement. The lumpectomy and the port placement occurred on the same day. Yes, it's been over two years since my lumpectomy. March 20, 2015. So it's actually just over 2-1/2 years. I'm not counting or anything...
It's been in so long because my Medical Oncologist said, basically, since a triple-negative tumor is not something to fuck around with in a young woman, and since the research shows that the recurrence of my type of cancer is pretty high, she wanted to leave it in for 2 years after all of my treatment was complete. I finished chemo in September 2015. I finished radiation in November the same year. So, I'm at the two year mark. Right?
Anyway, it's not like my surgeon had a choice. I know she didn't say, "I'm going to put this right here just to be a pain in the ass!" It's just the way my body works. It's my Anatomy & Physiology...A&P...if you will.
It's nasty and I try not to rub it. Because, really, you don't want to rub my port. It's not hot.
And when I sleep on my stomach, I can kinda feel it...the pressure from the mattress. Not ok.
|Kinda like this...|
Sometimes, when I interact with people who are not particularly kind, I kinda feel like it's going to jump out of my chest and land on their face. You know, like Aliens do.
For the past 2-1/2 years, every 6 weeks, I have to get it flushed. This means I go to the Cancer Center, check in, get my hospital bracelet on, go back to and check in with the chemo nurses. I sit down in a small room, she scans my bracelet and asks me my name and birth date. We gotta make sure I'm me. Then she sets up a sterile field: gets the syringes full of heparin and saline and she gloves up and she places her face mask and gets the needle with the long tubing and she sticks the needle in my chest into my port which has a catheter on it that goes directly into my heart valve and that's where the chemo went in and the blood will come out.
Breathe. Because the technology and science that is used to help cancer patients is pretty fuckin cool. And I'm thankful to the researchers and the patients and families went before me and mine.
And then the nurse does whatever she does, but I'm not looking, you with me? Because there's a goddamned needle in.my.chest. (but not like Uma Thurman) and I'm done with that shit. Look away! To the right where you won't see! Breathe. In. Out. She talks. I listen. We chat. Relax. Just. This. Channel The Bride. Because, really, after all I've been through as a cancer patient, getting labs is not that bad, physically. But, the process of getting to the Cancer Center and having labs done is a mind fuck for me. So I do my best to draw strength from various channels.
The week I have labs, I feel it all the fucking time. All. The. Fucking. Time. Coming out from the depths of my soul, out of my skin. Alien.
It's way worse than that huge fucking zit in the center of your face when you were in high school that you were convinced the boy you had a crush on since middle school was going to see it and then projectile vomited on your shoes when he saw it. It's like that. But worse because you have no control over when, exactly, you'll be popping this zit.
And those weeks, I hate my chemo port. Loathe.
When they poke me in the chest with a needle, I'm kind to myself on those days. It's stressful. Before I leave my house, I put a thick dollop of lidocaine cream on my port, then cover with plastic wrap. For reals. And by the time I get poked, my skin is numb. It makes the needle stick less painful physically. But the mental fuckery is the same. And when they take the needle out and I get back out to my car, I always treat myself a nice piece of chocolate. Seattle's Best. Or Ghirardelli. I've reached a point in life that Hershey's ain't gonna cut it.
Sometimes when they flush my port, I get a weird taste in my mouth. It's common. Or I feel a little salt water in my nose. It doesn't drip out, it's more like when you get a bit of water when your swimming...that slight burning sensation...it's gross. I know. Believe me. I. Know.
One time, when we were homeschooling him, I had to take Nathan with me to get my port flushed. He did great. Given everything he's been through...the countless times he's had his blood drawn for the docs to know his med levels...the multiple EEG's...the MRI.... He's actually incredibly comfortable in medical facilities. He stayed close, but was not shy about hitting the snack cart they have in the infusion area. Yes, you may have a bag of Ritz Bits. And a granola bar. And a hot chocolate which was too hot to drink. Yes, absolutely you may get another pack of Ritz Bits for your brother. You're a thoughtful person, child. The nurses were very welcoming and kind to him, which, of course, put both of us at ease. He didn't watch the nurse stick the needle in my port.
So it's out. I saw my surgeon on Wednesday September 27th. At the hospital. In the OR. Not in her office. Because I need to be kind to myself and I don't want to feel the tugging and the pulling and the slicing. Put me to sleep. Thank you. And thank you for waking me up.
Thanks Stace for getting up at o'dark o'clock and being at my house at 5:30 AM so I could check in at 6:00 AM at OMC. You are my rock. I love you.
Thanks boys for getting up at 4 am on your own because of your own anxieties. I get it. I didn't sleep either. Maybe about 4 hours. I love you both.
We told them the night before. And, in their short lives, (they are 11 and 8-1/2) with all that they deal with and have dealt with, particularly in the last two years...this isn't just getting a chemo port out. There is no "it's a routine thing" in my home. Not after my chemo and my radiation and their Dad's diagnosis and hospitalization in Seattle and let's not forget Daddy's seizure and his radiation and his chemo and all the autism and Nathan's countless seizures. And Isaac's broken arm. All of that is, nay WAS, in that chemo port.
Isaac said to me, "Mom, maybe when your chemo port comes out you won't be so cranky." I love you too, I. You should be thankful I didn't thump you on the forehead. Troll.
Thanks, Stef, for the hug and holding my hand in the pre-op area of the OR. I'm so thankful that you were my nurse when this goddamned port was inserted in March 2015, and that I got to see you just before it was removed in September 2017. I know you get it.
It is out of me. I am thankful I no longer have a piece of plastic, embedded under my skin, with a tube attached to it that runs directly to my heart valve. I am thankful for the science.
Please, Universe, never again.
I have stitches. And glue. And I'm gave myself an opportunity to rest as much as possible for the remainder of the week after my minor surgery. It was a quick in-and-out. A routine thing. I know. It's a little exciting for my family to have "a routine thing" so we all just rolled with it.
And were doing our best to take care of each other and ourselves.
Thank you Randy Anderson for having an amazing job, with stellar benefits, and for working so hard and smart and being so incredibly dedicated to me and our family and our life together.
I love you.
The past nearly 4 weeks has been good. Basically, the reason it came out in September instead of November was that the test results of my bi-lateral MRI with contrast I had in August came back and my boobs are stellar. There is no evidence of disease. We have a new medical oncologist at the Cancer Center, and he was basically like, "look, you can get it out now, or you can wait till November. I completely respect whatever decision you make." We agreed that I'd think about it. And I meditated. And slept. And had long conversations with my husband. And I went back to the fact that when my medical oncologist said, "Tell me how you feel about your chemo port," my response was "it's horribly inconvenient" which I then translated to "it's time for it to come out."
Last night, I was fortunate enough to be invited by my friend Carrie to the OMC Cancer Center annual fundraising dinner, where a woman paid $4,100 for a painting and a case of wine from a local winery. (thank you, lady, for your contribution to saving lives. seriously.) I had the opportunity to listen to the powers that be at my local hospital talk about the new facility that's being built to serve more cancer patients here on the Peninsula, supporting rural health care because 1 in 3 of us will be diagnosed with a cancer in our lifetimes.
|Me, Carrie, and Holly|
I also got to see my friend Holly, who's a breath of fresh fuckin' air. Thanks to both Holly and Lindsey who told me that my writing is important and valuable and that you appreciate what I do.
And, I took the time to personally thank the commercial loan officer of Key Bank (where Carrie and Holly work) for providing the $20 million loan to OMC for the cancer center. Thanks Stan. I appreciate the huge commitment from you and your employer.
And, since I happen to have experience as both a cancer patient and a cancer caregiver, yes, I'm more than happy to serve on any advisory boards for said facility. Because my family is now one of those families that has experience and knowledge that can be shared to help others in my community.
The incision that my surgeon made is healing. She used stitches that will dissolve. And a lot of glue, which is nearly gone. My pain isn't bad...more like a discomfort when I move suddenly or repeat movements with my left arm. Because my bra strap rubs on the dried glue/scabs and it's nasty.
And while this chapter of my life is, please Universe, coming to a close, I still have anxiety about cancer. Because, basically, as a survivor, every time there's a new ache or pain, it's automatically a cancer. Stub your toe? Cancer of the toe. No shit. And from talking with other people who have been through it and survived, it's common. My son complained to me about a headache the other day, and I immediately jumped to "inoperable brain tumor" because that's the kind of mind fuck cancer creates. Turns out he needed to eat and drink some more water. If only all of life's ills were taken care of so easily as to eat strong foods and drink more water.
When I was growing up, my Dad told me on more than one occasion that if you have good health, you have everything.
So, here's to your health. I hope it's your everything.
|...but more like this.|
*Written over the course of the past 2-1/2 years
Sunday, September 10, 2017
Had you been listening:
Isaac: "Mom it's Nathan's birthday so I don't think he should have to feed Abby."
Me: "That's a nice idea, but he still has responsibilities. When it's my birthday, I still have to feed you guys. I don't just get excused from things."
I: "But, Mom he's the Birthday Boy!"
Me: "And I'm the Birthday Mom! If you'd like to feed Abby as a gift to your brother, you may do so. Otherwise, Nathan's responsibility is to feed Abby breakfast."
I know she has been fed. I don't know who stepped up. Bc I'm not that responsible today.